Chris' Addiction To Life Marathon

A note to readers

2010-12-30T08:29:00.002-04:00

Chris feels that I should continue to post my entries in the Addiction to Life Marathon.

I had stopped posting late May because I felt some of the material was sensitive and I didn't want to 'expose' Chris to the public domain any more than I have, until he is an enthusiastic and willing participant.

Yesterday, after reading some responses to the Christmas letter, he wanted me to post more. We made a deal. I will post if he reads and approves of the material first.

The words may be mine but they are for him, not the world.

Like any present, once given, it is then the receivers to do as they wish. I guess this gift is not different. He swayed my thinking on the subject with these words: "It could help someone now, why wait until later, post the entries now. Reading about this journey could help someone today.” He made a good point. I suppose that someone somewhere may benefit from the insights that we have collected in the pages of this journal.

So I will be posting again, intermittently. I have continued to journal everyday since that weekend in May and have accumulated over 200 pages. Chris and I will post the entries together.

We hope that the words will find a heart, or hearts to heal.

May 30 Cabot Trail Relay - leg 11

2010-12-29T12:46:00.001-04:00

Sunday May 30

It turns out the CTR was amazing for you. Your team rallied about you and gave you all the support you needed … both physical and emotional … and by the look of the van when it got home – a sufficient supply of Tim Horton’s 4X4.

The Tidal Boar Runners, Team 29, were responsible for a water stop. Each year the water stops are farmed out to the teams to man. Your team always takes a stop. This year was no exception.

There is a prize for the best water stop and so the competition is fierce to make your team’s water stop memorable. Generally there is a theme to the stop. The stops during the night legs are harder to make impressive then the daytime stops. This year the theme for the Tidal Boar Runners was Baseball.

A few months ago, you had an idea that you had worked on for your teammates. You bought them baseball shirts with the Tidal Boar Runner logo on the back and Team #29 on the right sleeve and the last name of the runner on the left arm. You handed these shirts out to the runners of the team and when the water stop was set up, everyone was wearing the shirts, throwing a baseball about and handing out water. Teammate, Jodie, worked out a system for you to hand out water to the runners. After a few practice ‘run-bye’s’, you and Jody had an efficient water distribution system.

The relay was ticking along well until it became apparent that there was no runner for leg 11. Leg 11 starts shortly before midnight and with no runner the team would get an incomplete on the race. The unexpected often happens in events like this. The CTR organizers have a loophole rule that allows a team not to default. The rule allows a team to place a runner in the leg and if the leg isn’t finished, the time given to the team is the time of the slowest team plus 5 minutes.

Martha kept the idea from you until close to the last minute, so that you would do it for the team. As expected, you did. You took leg 11 without hesitation. Just like other years when you would go that ‘extra mile’ for the team, this year was no exception. You didn’t just start the leg but you also walked a good couple of hundred metres. The teammates had a special finish-line for you to cross… which you did… of course!

Who would have thought a few months ago that this would have been possible. It hasn’t been lost on me that your team 29 needed you on the 29th and you came through. You inspired the team and all the people at the CTR.

After this leg, you smoked your last cigarette. You decided that this is your pivot point. In the highlands of your beloved Cape Breton Island, you made a conscious decision to take charge of your life and health and not smoke.

At the banquet in Baddeck, later today, your name was announced. The announcer talked about the health struggle that you had over the past several months and that you have not let it define you. You took part in every aspect of the race and even took a leg! There was a standing ovation by all the fellow runners. You were overwhelmed with emotion at the outpouring of support. The clapping seemed to last forever … it was probably just a minute or two. You wept uncontrollably. Tears of Joy. (I teared up too.)

Several runners who you respected and admired for a long time, came up to you with their own words of encouragement. Some with tears in their eyes too.

Rami, a very good runner who has done Boston a number of times and places near the top on his age bracket, came up to you after the banquet. He spoke about his weekend experience. He ran a difficult leg (leg 5) and he wanted to get first place. He did. A few legs later, a teammate was injured and so he ran that leg too (leg 10). Just as you would have. He said that during the run he was starting to feel it. So like most athletes of that calliper, he didn’t reach to his legs for strength, he reached to his mind. He thought of you. He thought your courage and determination to overcome what, at one point, was hopeless, and he pushed on. He placed second out of 70 teams!

By this time the three of us are feeling pretty emotional. For his big finish with you he said “I got a trophy this year at Boston for placing third in the division. It’s glass and sort of looks like an ashtray. I want to give it to you.” You wept.

After the emotional high of the CTR, there was a long drive home. Chris G and you drove home in the van and the children, Annie and I drove home in the fit. On the drive with Chris, the two of you relived the highlights of the weekend.

Chris made a very good point to you. The standing ovation represents a small number of the people who are standing on the sidelines, cheering you on. People from every aspect of your life. Your childhood friends in Ottawa, your family, the families at the church, at the school, baseball friends, runners and everyone who has crossed life paths with you. They all want to see you make the best recovery you can. They want a happy ending. Only you can make this happen.

The ending of your Marathon is yours to finish. We are only your cheerleaders.

Chris G’s peptalk seemed to hit a note with you. I think that you are starting to realise that many people are standing for you. They are invested in your recovery. You are an inspiration ... in the making. You have to keep the recovery going to continue to be the inspiration.

Christmas Greeting's 2010

2010-12-29T12:02:00.002-04:00

Chris's Christmas letter 2010

Wow!! Another year has flown by and boy, are my stem cells are tired! It seems like just a few months ago, cartilage from my knees was being weighed for use in Spiderman. Thank God my life-force sense started tingling.

We had a big year. Gwen or ‘Gwen the glue’ as I call her, kept everyone on their very busy schedules. I wish I had the wit to make a joke about how important to her family’s survival is to Gwen was but sadly it would “tank”. Just like General Rommell did in Northern Africa during WW2.

I think Gwen was greatly relieved to get back to work in September but I am sure our loss was Truro Vet’s gain. She did get out in the garden a couple of times this summer but both times I dragged her back inside to talk to a salesman (1st time) and a Jehovah Witness for the prosecution (the second). For Christmas, Gwen wants an amphibious garden on a giant carrousel with a large moat around it. You also have to be able to leap 6 inches to a small platform to gain access to the garden. Good luck getting that in here, Santa!

10 year old Tara is growing and maturing at a phenomenal rate. She is involved in everything musical. If she hears a song on the radio or CD player that she likes, you are guaranteed to find her plucking away on the piano and figuring out the tune with amazing success. She is really becoming a mini Gwen in that her values and scruples are very sound and she forces them on the rest of us almost relentlessly (much to her Dad’s frustration)… Wake up Dad. She is right just like her Mom. She will be a “Star” as long as Dad finds the sense to get stay out of her way.

Jungle “Quinn” is an athlete in every sense of the word. He is very dedicated to his gymnastics. He played baseball this summer for Texas. They won all their games, as did all the other teams. He is a natural at everything he tries. Sadly his Dad tries to take some of the credit for this. Hopefully he will be the start of a new and very much improved gene pool. Quinn has one other magnificent trait I want to share with you. Day or night, good mood or bad, Quinn, our precious little boy, will help his Dad. Whatever I ask of him, he tries his hardest. No matter what the task, he is always there for me. Small wonder he remains my “Hero” in great standing.

I, Chris, am home and currently working on exercising (or excising) my many demons. It is slow going and I question every couple of minutes if I an am up to the task. Progress is far slower than I want it to be. I complain and whine muchly. I feel as if I need another miracle to save me. It just hasn’t fully sunk in that ‘I have to be that miracle’. I hope 2011 is an incredibly wondrous year for everyone and I hope that next year’s letter makes you laugh and cry at the same time. Much love to you and yours.

Now a note from me(Gwen:

We are sending you these letters because in a small or big way, you have played a role in helping Chris and our family recover. It may have been lifts to the hospital, food at the door, visits in the hospital or at home or it may have been a phone call with the right message at the right time.

As a person who has a good understanding of life sciences, it continues to amaze me how I have only just learned that the human species is a functional biological mass that enables us, as individuals, to achieve things that we would have never thought were possible. There is a group effort for every individual accomplishment. Miracles would never happen without the help of others.

This year, Tara has asked the question that all children ask. There comes a point in a child's life when one doubts the magic. This 'right of passage' transcends culture and religions. At this time of year in our culture, belief in Santa often comes into question. There have been rumblings at school that Santa is not real. Not wanting to believe this, she came to us and asked. "Is Santa the real thing?"

My reply was automatic - I didn't even have to think. "Of course he is. It is a matter of belief. If you believe in him ... then he is real. Believing in something makes it real ... believing in something makes it happen. People call these miracles but miracles can and do happen all the time because someone, somewhere, believed that they could."

I will be the first to admit that some days Chris's recovery doesn't seem like a miracle. Chris may argue that he is the first to admit to these lapses in faith. But when our faith wains, other people's faith takes over and allows our miracle to continue.

This is a letter of thanks to all of you that have filled the gaps of belief and allowed for Chris's and the family's recovery to continue.

Chris has been home since late April. He has, and continues to make improvements everyday. Physically, he is healing. Emotionally he is healing too but that has been a struggle. The emotional damage left by the stroke impedes his belief in himself. Thankfully, that too is starting to change. It has been an emotional roller-coaster ride since he has returned home. On his good days or moments, he talks about the future with a positive attitude, can see the progress he has made and imagines more improvement as time goes by. Bad days are ... well, just bad days - nothing more.

He has far more independence now within our home. A large part of this improvement must be given to Kim. On June 25 (his birthday) he got Kim, his own 'personal trainer and coach'. Kim has been working with Chris on the days that I am at work and has coached him to improve in many little tasks. There are many more basic day to day challenges ahead of him so she will be busy. She is very dedicated to his recovery, possibly more than I, which is impressive since Chris may improve to the point where she is out of a job!

He is now a proud owner of a trike. Triking is physically demanding exercise. The peddles are positioned so that Chris must peddle parallel to the ground. Gravity is no help in pushing the peddles. The trike and walking are his main forms of exercise and help him burn off the Tim Horton's 4X4. Smoking continues to be a challenge that he is trying to battle. Thankfully his pain is under control, as are most of the other daily demands that one makes of their body.

Chris has had a few significant moments during his recovery this fall. At the end of August, Chris was the honorary race marshal for the Cobequid 10 k and Half Marathon. One year ago this race marked the start of his journey. He spoke to the runners and shared with them some of his epiphanies of the living experience that he has had since his stroke.

Late September, Saint Andrew's Church organized a family walk to raise money or the Nova Scotia Brain Repair Centre that is being built across the street from his room at the NS Rehabilitation Centre in Halifax. The church raised over $3000 for the centre. Despite her poor health, Chris's Mother and Father flew down for this event. They did some of the walk and soaked up the local support that we have all around us.

Lastly, in early December, Chris was the motivational speaker for the Provincial Boy's Volleyball Tournament. He hooked the volleyball players with his unique sense of humour and then he spoke of his journey. He spoke of the life paths he had taken and how he could have done things differently. He spoke about the poem 'If" by Rudyard Kipling and the impact it made on him both before and after his stroke. He spoke ... and the boys listened. I had to read the last few sentences of his speech because his emotions got the better of him. There were over one hundred young men there that heard his message and if he helps just one of them, then the tears were worth it.

This was an extra special event. 'King', Chris's new service dog made his first public appearance. He is a dog that is being trained as a service dog by women at the Nova Institute, a local federal prison for women. It has a program called 'Pawsitive Directions' for the woman to participate in that involves adopting dogs from shelters and training them to be special skills dogs. To date they have matched many people to special dogs that make their day to day life a little easier. King lived in the Charlottetown SPCA shelter for seven months when he was saved and put into the program. He has lived at the women's prison for a year being trained. He is the most recent miracle in our lives. Now Annie, our dog, has a new best friend, when he is not working.

I continue to journal almost everyday. I use it process my feelings and document Chris's recovery as well as acknowledge the steady stream of inspiring people who enter our lives almost daily. Two of the most important inspiring people for Chris and I are Tara and Quinn, who continue to give us strength to continue this 'marathon recovery' everyday.

We hope these letters find you well and most importantly, that you are continuing to believe in the miracles that exist in your lives. Miracles are everywhere. You just have to believe.

Thank you for being part of our miracle

Chris, Tara, Quinn and Gwen.

May 23 - 29 Pre Cabot Trail Relay

2010-06-06T22:54:00.002-03:00

Sunday May 23

Today, while talking about your smoking, you pause and look at me with the look of wide eyed discovery. “Learning not to smoke will be like a whole other marathon.” The Addiction to Life Marathon.

This morning, you and Steve went to the church together. Steve got to see, first hand, the support that you have from the church community. He can see why you love the congregation. They truly are wonderful.

It’s a beautiful day. I get some garden time and the children played with Laura while Steve hung out with you and helped assemble the new patio table. Our old table was a wooden picnic table that has seen many birthday parties, BBQ, bubble blowing contests and science experiments including the dissection of a weasel that we brought back from Cape Breton last year while you did the Cabot Trail Relay.

The old table is on it’s last legs … literally. Steve dismantled it and cut it into pieces and tonight we made a fire and converted the table into smores (and a little CO2). I didn’t play much with the kids or eat smores but I did have a chance to ‘work’ in the garden. Garden work is not really work. It’s a mental health therapy. I guess it’s because I can, for a brief moment, be under the impression that I can control the undesirable and nurture the fruits of my labours.

This is a feat that I find challenging to do in my real life.

You were low in the early evening. I persuaded you to have a nap – you did lay down but then asked for a phone and ended up calling people. You called Janice. Well, it wasn’t much of a nap but it did seemed to help. I guess that that is your mental health therapy... connecting to people.

I think that both of us have empty reserves emotionally. It takes very little to drain me. A poor night’s sleep, an illness, even a small unexpected twist in the day throws me into a tailspin. I am going to have to work at building up my reserves. Hopefully, in the process, I will learn how to help you do the same.

Monday May 24

Steve, Laura and I talk about your depressed moods. We talk about how hard it is to watch you go through your grief. There are so many things that you can’t do and it’s so easy to be drawn into your way of thinking. I tell them of the random thoughts that have been popping into my head as the days pass. There are so many reminders about the house of the things you can’t do: snow shoes, cleats, bike … things you can’t use now or perhaps forever. These thoughts make me very lost with sadness. I can hardly see my path when I feel like this.

I know people try to reach out and give us support but can’t truly understand how the lost affects our lives. Sometimes the platitudes that we hear seem very generic and somewhat empty… devoid of real hope for the future. Platitudes are a natural human response to uncomfortable situations. I have been guilty of this very thing. When an acquaintance with a serious health issue crossed paths with me, I would resort to platitudes too because what else can you say? It is easier to say platitudes when you are not in the center of the storm.

I scared about next weekend at the Cabot Trail Relay. I’m scared that it will be a reminder of the things you can’t do. In the past years you were very involved with every aspect of the race. Everything from running legs to moving cars, picking up and delivering runners to providing nutritional and cheering support. Out of this abrevated list, most things you can’t do. But you can cheer and that is your plan.

I suppose that the experience could go the other way and be uplifting but I am still scared.

Tuesday May 25

The OT and wheelchair guy came today to re-measure you for a chair. The first prescription had some deficiencies. I don’t know what the NSRC OTs were doing in the 13 weeks they had you. They had lots of time to get measurements and get a chair but somehow, between the three different OT’s no one managed to actually finish the job. (Although the last OT did try – but she didn’t have enough time.) So a month after your discharge, we are still renting a chair that we never agreed to rent that has broken 4 times.

I really don’t want to pay for the rental out of principle.

I am having more reservations about the Cabot Trail Relay (CTR). Staying up all night and then driving back to Truro and to the airport seems insane and a possible recipe for disaster. You seemed worried about this too.

Last night, Tara, Quinn, Steve and Laura and Annie and I went for a walk. When I suggested to you that you roll with us, you didn’t want to. You wanted to stay home… out of the way. While we were gone, I know that you dwelled on the fact that you couldn’t even go for a walk with us ... I know that I did.

Overall, I can certainly see some improvement in the past month since you have been home. You are more sure about stairs and I am even relaxed enough to let you walk short distances without me right by your side. You even transfer from chair to standing on your own most of the time. These improvements come at the price of taking risks.

Risk taking is a balancing act. To improve, you need to take risks, but they have to be calculated risks. Your strength is building and as long as it is early in the day and you have had a little time to loosen up after rest, you are capable to take risks.

Steve and Laura see a big difference in you but they hadn’t seen you since late October. Each day, I try to remember that you have improved, but it is hard for me and even harder for you, especially when we are also dealing with your losses every day.

Tara is upset tonight. She is feeling pressure. Pressure from schoolwork. I don’t think it is real pressure. It is self-imposed but she preserves it none the less. Being a bit driven by nature, it is real to her. She was very upset tonight about a homework project. She wants to do well. I try to calm her but I can’t.

Tonight, when I get home, there is spilt coffee on the carpet and urine in your shoe, along with Tara’s worries – I feel pressure from all sides. I want to stop the world for just a few minutes so I can catch up. I feel so behind.

I can see that Tara’s self imposed pressure and mine are interrelated. I shall have find a way to lead by example.

Wednesday May 26

It was a tough day at work. The vet work was fine. It’s the emotions that are running at work that are hard to deal with. My anger at the system that has mistreated you is spilling over to other parts of my life. Someone cried at a meeting today and I feel like shit. We have to change some things at work to make the time I spend there more efficient. Change is scary. I know that all too well. I can understand that no one wants change forced upon them but sometimes, one just have to accept it and move on ... I’m learning that the hard way.

I guess that this is a sore point with me because this is my personal struggle now and I need everyone on my team at work to play the game by the new rules.

When I got home, I had to vent to you. You listened and wanted to help. You had a good day. Trish was your afternoon visitor and she had you feeling pretty good by the time I got home. You did great with the childcare this afternoon. You and Trish got the children to ballet and gymnastics. Trish tells me this with obvious pride in her voice. You played the parent role well. Even when Tara challenged you, you held your ground and she obeyed your wishes.

A parent never really forgets how to parent and nurture a child. It’s instinct … and you still have it. You just have to exercise it more often and build your confidence.

There was an informal meeting to plan the Cabot Trail Relay race this weekend. Laura picked you up and when you got back, I could tell you were itching to be the runner who comes through in a pinch … just like other years.

I can’t imagine how you will do it but I think that somehow, you will find a way to make your mark on this weekend’s race. I just hope that it will be positive.

I am worried that the whole CTR maybe a little overwhelming or anti-climatic for you. Staying up all night like you have planned doesn’t sound very smart. Fortunately, Martha will be with you and I know that she is very sensible and practical. She also has a powerful persuasive voice that forces you to listen. And if you won’t listen, then I’m sure that as an ex-International weight lifting champion she can find ways of persuading you.

Thursday May 27

You and Trish bought Walkie Talkies yesterday. We already have two sets of Walkie Talkies but I guess we needed more. As I leave to get Martha from the airport. You and the children are happily carrying on a conversation over the walkie talkies about getting ready for bed.

You have always been a kid trapped in a grown man’s body. Now you have an excuse to let the kid side show more the ever.

We have both been worried about this weekend. The Cabot Trail Relay (CTR) could be a great thing for you or the worst reminder of all the things you can’t do. You expressed your worry to me about this. I couldn’t say anything to you for fear of amplifying your anxiety.

Martha arrives. She is, as always, full of energy and positive thoughts and words. In just the 45-minute car ride to Truro, I started feeling better about the weekend. Martha will make it great for you ... I can feel it.

Friday May 28
Quinn went to the dentist today for a consult about the extra tooth that he was given at birth. It needs to come out to make room for the other teeth. He ready lost the extra baby tooth. Now we have to deal with the permanent tooth. He is a little nervous about the visit. I reassure him that it is just a visit to make a plan about how to do it. The dentist is great. It’s clear he loves kids. Quinn seems happy with the plan especially since the dentist let him help make the plan. Smart dentist.

We packed up the two cars and drove up to Cape Breton. You and Martha drove ahead to attend the captain’s meeting and the Annie, the children and I went to Kate and Brook’s Farm, Annie’s birthplace or ‘Kate Brookin’ as the children have learned to say Cape Breton.

The car barely came to a complete stop before the children were out the doors and into ‘Old Man Farm’ land with their friends. I visited for a while with Kate. I brought her up to date on my fears, hopes and worries. Her calm, level headed and insightful voice was music to my ears. A dose of Kate and the farm was just what I needed.

I had to search for the children to say goodnight. They hardly cared that I was leaving. “Yah, yah, yah, I WILL see you tomorrow you know Mum.” Tara said sarcastically. Quinn was a little more sentimental. He wanted to sleep in the bed that we would share the next night. Tonight, he was going to sleep with Annie.

I went off to meet up with you, Martha and Laura at Saint Anne’s College. The starting line for the CTR! We stayed in the residence there for the night. You were letting the cigarettes rule you tonight. You go to bed angry with me for not enabling your smoking.

Saturday May 29

It’s an early morning for the race start at 7am. Martha has the first leg. She is up first and ready for the day before you opened your eyes. We see her off at the start line and the relay had begun. You and Chris G load into the van and head off to support her in the race while I drive to.

Old Man Farm = RESPITE … aahhh … happy children, peaceful surroundings and animals and wonderful talks with Kate and Brook!

Kate tells me a theory on how to deal with bad feelings. “You don’t try to stuff down your feelings. You don’t try to hide your feelings. You don’t get mad at yourself because of your feelings … feelings are just feelings, you have a feeling and you acknowledge that this is what it is like to be incredibly angry or disappointed or sad or whatever the feeling is. You let yourself have the feeling, but you do the right thing anyway.” She emphasized it with an example ”I feel like bad but I still need to make supper for the family and do the things I need to do for my wellbeing and the wellbeing of other people.”

I can see that I will have to practice this skill. “Don’t let other feelings layer on the bad feelings that you have.” She advised. “Don’t feel anger and feel guilt for feeling angry.”
I certainly relate to the layers. My anger is layered with guilt and selfpity.

Kate also sung the praises of mediation. She has practiced this and so has Brook. She feels it has really helped them. I have often thought about mediation even before this chapter in our lives. Recently I have thought about it more and more. To focus on your own breathing for a minute and think about nothing else but breathing in and out. Just exist in the moment and create a little bit of solitude no matter where you are.

This is would have to be another learned skill.

While Kate and I connected, Annie connected with her brothers and sister. At first she was regarded as stranger on the farm. She felt rather overwhelmed. After being dominated by all her siblings she found her way into the pack and Annie reconnected with her kinfolk. Unlike last year when she happily bounded from the car into the pack and went on adventures with her sister, this year, I think, she feels a little removed from her pack. Almost a little citified.

Personally, I think she preferred sleep with Quinn and me then hanging with your biologic pack.

May 16 - 22 - Worst Year and Best Year

2010-06-04T23:31:00.000-03:00

Sunday May 16

It didn’t work. I’m not surprised but I am always hopeful that something I say will influence you to make the very big choice not to smoke. But really, who am I, to think that anything I say or think would be so powerful as to overcome the addiction’s voice.

This morning at 2 am, you woke and wanted to smoke. I persuaded you to go to back to bed. But at 6:45 you were up again. “I need to go out.” I should have known that it was just wishful thinking. As I get you outside, I remind you that this is the addiction that is forcing you to smoke not you. “I know” You said, “My love for you made me choose not smoke last night.”

Love? Well where is your love this morning? I didn’t say anything to you ,,, I know that this angle is not worth pursuing. I have come to realize that the choice not to smoke requires every ounce of your will power. You had it at 2 am but it went with your sleep last night.

Who knows when your will power will return.

This weekend completes the third week of your new life at home. I have to say that I have noticed improvements. You are much steadier on walking up and down the stairs and I rarely have to cue you to watching your left foot as it moves. In the past, when you kicked out your left leg, unless you made a conscious effort to look to see if your leg actually moved, you may not realize it if it didn’t and when you took the next step with your right leg you would fall because your left leg is not in a position to support your body when you lift your right leg.

Oddly, going up the stairs is easier then going down the stairs. I think that this is because when you step up with your right foot and then haul your left up after, the toe of your left hits the riser of the stair case and the sound cues you so that you know the foot is in a good position. Of course the same thing can’t happen for going down the stairs. Instead we have to rely on the good old-fashion technique of actually looking at where you are going.

I am looking forward to Wednesday afternoon. You will have the PT and OT people here who will teach me and your homecare workers how to do

Lately, visiting Mum has provided a safe place to vent my frustrations. Since she was moved to Colchester hospital the same weekend that you came home, Mum and I have had weekly debriefing sessions. It has been helpful to me and I think it makes Mum feel a little better knowing that she can help in a small way.

After the children have caught her up to date on their activities of the week, she turns to me and asks “How are you doing?” The children had gone outside to play with the scooter that Quinn got for his birthday. “The health care system is broken.” I said. I have been so frustrated lately and my anger has turned to the health providers. Actually, not the providers, the system in which they work.

I am frustrated that we have so much technology that can save a life and yet, the system can’t find a way to provide the patient with care after the initial treatments. You have been home now with only homecare in place for three weeks. While some would say that is good, I would argue the point especially on the days when you are feeling down. You need emotional help. I need you to get help from someone that is not just me.

At your low moments, I feel low. I feel low and angry. I feel that the system ate you up with promises of a miracle. Then it squeezed you out the other end with nothing to help you in your recovery for the long term. It would have been more humane to deprive you of oxygen on the day of your stroke then to deprive you of psychological services since your release from the rehab.

Thankfully, I don’t get these feelings often … just when you are low. I don’t get them for long … just until the next supportive friend comes along and helps me see how far you have come. I may not have these bad feelings for long or often but … man… these moods are intense.

The intake practical mental health nurse, who did a phone interview with you the other day, described you as a ‘medium high’ risk. Unfortunately, due to increased demands on their services, the earliest appointment that you could get was in the middle of July. That will make it a full three months since your last psychological session. I guess we should be thankful that you are not a ‘high’ risk patient who has to wait three months!

Just when I thought that life couldn’t get any more complicated, it did. While I was visiting Mum at the other rehab in Pictou, you went to church. Well that is harmless enough. After church, you arranged for a friend (who shall remain nameless to protect the innocent) to pick you up and bring you back to our house. It seemed like a simple plan. The problem first started when Tara, Quinn and I were half way to Pictou and realized that we had your cane in the car still. Tara called you on the cell just before the church service to let you know the problem. “No problem, I will manage.” You said.

On our way back to Truro, we called again to let you know we were on our way home. You and your friend went to his house to spend a little time together. That sounds nice too. When we got to the friend’s house, you looked pale and felt nauseous. The friend pulls me aside. “I did a stupid thing. Chris had a few drags off my marijuana joint and I don’t think his body can’t handle it.” The friend is visibly shaken and was worried that he would have to take you to the outpatient clinic at the hospital.

You were a little unsteady on your feet and both of you were feeling rather bad … and stupid. “Congratulations guys, most women can do stupid things all by themselves. Apparently it takes two guys to come up with a really stupid idea.” I said sarcastically. We loaded you into the car and unloaded you at our home and put you to bed. Tara was with us throughout all this while Quinn was visiting a friend. She wanted to know what all the hushed talking was about. In the car, you came clean. “I smoked a little marijuana and drugs are bad.” Tara looked scared. I assured her that it was a dumb idea but “Daddy will be fine once the drugs get out of his system.”

Once you are in bed, Tara is full of questions about marijuana and what it does to your body. I can tell from her questions that she is worried and repulsed by the thought that a parent ‘did drugs’. We talk about it and I share with her my limited experience with marijuana. Neither of us had good experiences with the stuff and I always felt it was a rather overrated experience. I mention to Tara that since neither of us like the effects of marijuana, she probably won’t like it either.

There is no harm in planting a seed early in a young fertile mind.

Bev, from the church came to visit while you were resting today. She brought a meal and some sound advice. She sat next to you today in the service. She realized some of your more challenging struggles. Difficulty scanning and staying alert. She also knowledge that to some people, the chair and the knowledge that you have a brain injury may make people feel a little ackward about you. She made an excellent suggestion. Get people to visit you in pairs so that they can get to know the new you and over come any apprehension they may have with seeing you with your stroke legacies.

This evening you were pretty relaxed. You have a plan. You won’t share it with me until you started to do it. “Give me the phone and my phone book. I got to make some calls.” You call a few people and do a survey. “What is your favorite number between 1 and 10?’ You ask. You write down the responses. You ask Tara and Quinn. They both say eight. You ask me. I say 7. You write down the numbers and take the average. “It’s six point something.” “Ok, what does that mean?” I ask. “Well in six days I will set my quit-date for smoking.” You reply like it is obvious.

You don’t like that it so far away. You decide to override the calculation and go with your gut. “Thursday, My quit-date is going to be Thursday.” You announce.

I want to believe, but I can’t. I won’t. I don’t want to be disappointed again. I want to be surprised. We look at the prescription of Champix that we got this week form the doctor. The package instructions suggest that you start the drug one week before the quit date. You won’t take the pill today.

My gut feeling that you won’t quit on Thursday is getting stronger.

You are enthused by the decision to quit. You get on the phone and confirm visitors for the week. I am pleased that you are taking the initiative. In a small way it compensates of the bad feeling that I have about Thursday.

At bedtime, you proudly tell the children that May 20th is going to be the day. They want to believe too.

Phone call from Bela at the church. She is among a few active individuals who want to organize a family walk to raise money for us. We talked about this idea and felt blessed to have such a wonderful community. Bela’s idea was that the funds could go to your care. We talked about this and decided that we would be honoured to be involved in the event especially if the funds could go to research. Specifically, stem cell research.

To some people the words, ‘Stem Cell Research” conjures up images of experiments on human fetuses. Thankfully, stem cell research these days has nothing to do with embryos! There are no real ethical issues. The stem cells are harvested for treatments are actually taken from one's own body! In Dr Mendez's case - his research involves harvesting skin and isolating cells from the skin - growing them in a tissue culture and then injecting them into specific areas of the brain with his 'Halifax Injector' robot that he designed!

In veterinary medicine, we do stem cell treatments using the same concept except the cells are harvested from body fat, injected into joints and used to treat joint disease. This has been used in horses and dogs very successfully.

Eventually this approach will be used to make total knee and hip replacements in humans obsolete!

Essentially, seeds that restore health to an area are harvested and sown within one's own body! No risk of rejection and no need tissue matching etc because the cells were yours to begin with!

It's too bad that Ex-President George Bush Sr painted all stem cell research with the same brush. (However what do you expect from a rather reactionary man.)

As I see it – fund raising for stem cell research makes a good opportunity to educate the public about the stem cell therapies that are in our future. Stem Cell treatment can be applied to many many diseases. As long as the disease is not heritable or cancerous - stem cell treatments can help - that would include most degenerative diseases.

Bela and her colleagues have tossed about all sorts of ideas to organize the event. They even picked a date. Sept 26. A Sunday afternoon. Families of all types are welcome. Young and old, two legged and four, walkers and runners. It should be a great time as well as a good thing that will go on to benefit many people.

Monday May 17 - Pathway

It’s a bad day today. You are quiet and down. The excited mood from last night, when you calculated your official ‘Quit Date’, disappeared with your dreams. Quinn is sick today and I think I am too. This is the first day since your marathon started that I just wanted to sleep. Quinn and I slept in and you slept in your chair most of the morning, while the homecare worker busied herself with little jobs about the house.

In the evening, while we are waiting for Tara and Quinn at gymnastics and soccer, we talk in the car. We talk so much more about things then we used to. I love talking with you but sometimes the subject material is heard to listen to. If you aren’t talking about smoking, you talk about being useless and that we would be better off if you were in a long term care facility (LTCF).

I don’t know how you can think that we would be better off. I can’t imagine visiting you with the children in a LTCF. I would dread every visit. Every visit would remind me that I failed you in some way and that I failed our family. I told you this. You are quiet and then you ask if you can smoke in the car.

‘Oh God.’ I pray under my breath, ‘Give me the strength … help me find a way.’ You hear my whisper and ask what I meant. I remind you of my mantra: ‘Everything always works out for the best.’ “I was asking God to help me have faith that this is true. To help me find my way.”

“I have to find my way too. My pathway … the Cashen pathway. “ You said.

It was a lifetime ago, before the thought of children entered our minds, we went on a vacation to Ireland. The birthplace of your ancestors. It was partly a vacation, partly a personal quest of an identity that you wanted to connect to and partly a quest to look at round towers. Round towers are a passion that Donald ignited in you. The study of them and the theories about what they were built for. Donald, was well read on the subject and he shared his knowledge with you.

We rented a car in Dublin and started driving south. We visited a number of round towers as we circled the coastline. Just north of the Dingle peninsula is a river. It is a special river that your Mother had spotted many years ago on a map. The Cashen River.

This was where you were going to explore your roots. It was November. The weather is warmer in Ireland then it is in Canada in November but the water is still cold. Your ambition was to swim in the Cashen River. To soak in the waters of your forefathers and become one with them. It was an overcast day but that didn’t deter you. You walked in bravely and swam a few meters. It was cold. I video taped it from the shoreline.

Of course the whole event took very little time. It seemed a little anti-climatic. As we left the area, we notice a small museum very close to the Cashen River. We thought that this must be the true reason for the excursion there. The museum was about the area and the people who lived in the area before the ‘troubles’. There was not information on the origin of the name for the Cashen River. Overwhelmed with the need to know more, you asked a lady at the desk of the museum who the river was named after. She said in her very Irish brogue “Cashen River? Well Cashen is Gaelic for pathway. A river was a pathway many years ago.”

Pathway? You were a little deflated with this news. I thought it had a very spiritual and inspirational message to it. You didn’t. When we get back to Canada, you tell your parents about the pilgrimage to the Cashen River. You tell them with a little disappointment about the meaning of Cashen. Pathway.

Now the word pathway has a new meaning. The life path. The choices you make. The attitude that you choose to wear. They are all pathways in your Addiction to Life Marathon.

Tuesday May 18

I thought about yesterday and I put away the Champix. It has many side effects that if they surface, they can deepen your mood. “Depression, suicidal thoughts” and unbelievingly “Completed suicides have been reported” is listed on the package insert among many other warnings.

I know that these warnings are really a complete list of all observed outcomes from the drug in all patients and not everyone experiences side effects but I am worried that if you are already hovering about the ‘deep despair pit’, all you need is one more reason to fall into it.

You swing between light and dark moods as easily as the wind blows. I find it hard to know from moment to moment which way the wind is blowing. Some days there is a prevailing wind and on some days, it is gusty and can come from any direction. I can’t keep up to the shifts. The Champix drug for smoking cessation could complicate this more.

At bedtime we talk about it. You are adamant that you are going to stop on Thursday. That is when you want to start the Champix. The problem is that package specially says: Set a quit date and start the drug at a low dosage one week before and gradually increase the dose. I suspect the reason for this protocol is to lessen the side effects. I suggest that you start the drug on Thursday and quit next Thursday and start the patch next Wednesday night to replace the body’s nicotine demand.

This plan sounds too complicated to you. You want to quit this Thursday. I hope that with a good night’s sleep I can get you thinking about the best approach to quitting more carefully tomorrow.

Wednesday May 19

It’s PT and OT day at last. We can get you doing some therapies again. You have had no physiotherapy since you left the NSRC other then what I have been plugging away at. I have been very frustrated with this but now we can get going on this.

Both the OT and PT can see an improvement with you in just the past two weeks!

You laid on the bed while eight, yes that’s right, eight women watched the OT put the moves to you. The OT starts with your should and moves down your arm to the fingers. Stretching and putting your limp appendage through all the usual movement that one makes in a day. This is an important exercise to do. We want to maintain as much normal flexibility in your arm as possible so this if other therapies are available to you in the future, You will have the best chance to benefit from them.

She then demonstrates how to cue you to dress. You are able to dress you top half fairly well but you need help with the lower body.

The next act belongs to the PT. She shows the ladies some exercises that you can do on the bed. And in your chair and even at the kitchen counter. For the grand finale, the whole audience files down to the mancave and you show them how you can sit on the stationary bicycle and bike. They are all impressed. “That would tire me out quickly!” One of them said.

I videotaped the whole performance so that when we finally find someone for self managed care, we can use the video clips to train them too.

Today’s homecare worker and her student, spent a lot to time talking with you. She suggested that you start to make a ‘Life List’ … a list of things to keep you focused and keep you going. You renamed her list the ‘Bucket List”.

You are not in a place to think about life … you just think about death.

You are down tonight. I know this is all part of the stroke but how long is this going to go on for? I have to get some idea so that I have a realistic expectation. Up until now I have been thinking that we could just talk out your sadness and eventually it will go away… What if it doesn’t?

Now, I realize that your sadness is more profound and deeper seeded then I ever imagined. It grows out of you from the deeper parts and is entwined with your belief system that everything happens for a reason.

As in the past, when you are down, I am down. I have not found a way to protect myself from your emotional swings yet. This will be an essential skill to develop. I just have to figure out how to do that.

Tonight, you are trying to make deals with God. “Just let me win the lottery and I will believe.” You are desperate for proof of some sort that God is on your side. As I try to explain that God doesn’t work that way, I absentmindedly, pick up and read a card that you had got in the mail today. My eyes and heart grow big as I read it to myself and then aloud to you.

It’s from a friend from the church who had moved away. Iris, she wrote a little note of encouragement and ended her note with some well chosen and timely words. “I admire you and Gwen for everything that you have been through. It is wonderful how we are given the inner strength when we need it.”

I wrote out her words on a piece of paper and put it on your clipboard that contains the ‘Things to try to do today’ list.

Thursday May 20 – DynaVision

Some days I forget that you surviving this stroke, is a miracle. People don’t want to hear that an event on the surface might look like a miracle but in fact it seems like hell. I have to keep reminding myself that your story has not finished. In fact it is really just starting and the miracle hasn’t fully revealed itself to us yet. There are faint glimpses of a miracle on some days but the full miracle hasn’t happened yet.

This is a miracle in progress.

Tonight was a little exciting. No, the ‘Quit Day’ passed with cigarettes going up in smoke. The excitement was in the evening after I got home. I had booked an appointment for you with a company called Pro-Vision. Kelly and her husband, Brent, operate a machine called Dynavision 2000 Light Training Board. http://www.dynavision2000.com/dynavision_in_rehabilitation.php

It is used to train athletes. Kelly is interested in seeing if it has other applications too. Other applications like post-stroke recovery. Currently she is assisting a local doctor to do a study with children and learning difficulties. The thought is that it will help their attention span and focus.

The equipment consists of a large wallboard that has 64 lights on it placed in concentric circles. The lights can be controlled to flash for various lengths of time, in two different colours and in a random order. Each light has a button as part of the light. Kelly explains the rules to each game as you sit in front of the board and scanning to see the lights flash.

As I read more about it, I can see there could be many applications for this training tool.
You had your first session tonight. You are quite excited about having something that you can really work on. Although there are so many ordinary things in day to day life that will help you too - I want to jump at the chance to get you excited about something.

At the end of the session, you were very enthusiastic about the training. “Will I be able to walk better? Or run? Drive?” You asked Kelly. Sadly, there are no answers right now … it is just an idea.

I think that this is worth a serious try. Even if it helps you a little, it will be worth it. In your estimation, if it can restore your vision to the point of being visually a safe driver, then it will worth it.

We are going back next week

You decided to start the Champix. I am nervous about this decision considering the warnings that came with it but I will watch you closely.

Friday May 21

Respite care – I finally get the concept of it. I had thought of it as help with the extra work to look after you but that’s not the real value. The real value of respite care to me is that it gives me a moment of two to step back and take a breath and recharge. Without that opportunity, I would surely lose it. Respite care is for the caregiver’s mental health.

Hollis mentioned mood swings to the dark side lasted a little over a year with him. “You can’t control your thoughts.” He said. “How long did it take you to get past that point?” I asked. “About a full year since I got home from the hospital.” Was his reply. My heart felt stomped on. I don’t know if I can keep going for a year.

It the long weekend and I’m on call and Mum is on a weekend pass from the Pictou Rehab and your brother, Steve and his wife, Laura, are coming to visit. It should be a rather crazy weekend but we will get through it.

Juanita brought Mum to our house tonight. I get her set up on the hospital bed in the family room complete with one of the walkie talkie’s that we use. Her stay at the rehab hospital in Pictou has been a little disappointing. Her condition is worse and her left leg is weak. Frustratingly, nothing can be done until the neurosurgeon sees her and so we have to wait until that happens.

I don’t know why I am frustrated, I should be use to the ‘system’ by now. The more I think about our health care system the more I realize that it is not patient centered. I had thought that it was staff centered but now I realize that our health care system is centered on serving the ‘system’, not patients. If you want any hope of having good service from the system – you have to have a strong advocate. Most patients are not in the position to fill this role. The job falls on the family members to have a strong voice.

This is the weak link to universal health care. There is very weak indirect sense of responsibility to the patient. What can a disgruntled patient do? Complain and refuse to pay their bill? No. All we can do is grit our teeth and pay our taxes and vote … but that won’t change the system.

Saturday May 22 - Steve and Laura’s visit.

We were busy all day with the day to day chores that don’t get done as they ebb into our life. Groceries, a friend’s birthday party, cleaning the house, brushing Annie so the house stays clean for about 60 minutes longer then last time. All this takes time out of a rather lovely Saturday morning and afternoon. I longed to get into the garden but there was no time.

As we run about doing errands, you say something that, in hindsight, sounds quite profound. “This year is the worse year of my life, next year will be the best year of my life.” I was caught off guard. I didn’t expect to hear you say these words. But you did. I even asked you if that is what you really meant to say. You said it was!

It seems that 99% of the time you are covered by darkness and then every once in a while a brilliant ray of light will come from you and your inner strength will shine through. The ‘Best Year’ implies HOPE. I only got a glimpse but it was there. I know that it is there.

We picked up Steve and Laura at the airport and whisked them back home to eat some dinner that Juanita had made. I had just finished my dinner when I got called into the vet hospital. It was well timed. When I got back the table was cleared and the kitchen was cleaned.

I am looking forward to being able to take a little time in the garden tomorrow. It is growing without me and my hands have a dirt deficiency. I need to play in the garden. Playing in the garden and walking Annie in the woods are my mental health medicine. I want to stock up with these therapies this weekend. Who knows when I will get another chance.

May 8-15 Everything will always work out for the best.

2010-06-04T23:07:00.001-03:00

Saturday May 8 – Quinn’s Birthday

It’s Quinn’s Birthday today. He is eight years old. He climbed into bed with us first thing this morning. His little warm body curled up between us. For a few moments things seemed as they were before your stroke. Cozy and comfortable … then I heard you groan as you try to shift positions and the reality comes racing back.

Sleeping is difficult for you. You seem to sleep fairly well, but you are very stiff in the morning and it is very difficult for you to get up and get going. I think the big part of it is that you are stationary laying on your back every night. You can’t shift your weight from side to side like you could before the stroke.

This morning is the ‘Doctor’s Nova Scotia Fun Run’. The children have been ‘training’ for the past six weeks. Tara took this undertaking very seriously. The school had a running club every Friday. Tara dutifully filled out the training diary every day in the running handbook that was handed out to the club members. Quinn took a less serious approach but still ran hard and kept up to the older children.

At the Fun Run, the announcer mentioned you and your journey to wellness and also Quinn’s birthday. Both the children were pleased with your notoriety. The children ran their laps of the track while you and I cheered them on.

Quinn’s birthday was a bit of a disaster according to Quinn. Last night, I stocked the pond in our back yard with 8 koi for Quinn’s birthday. This morning, you send him outside to look for them. They can not be found. Quinn is sad that his birthday present is missing. I tell him that they are probably hiding, but he is not convinced. He thinks they are dead. The night before, I had hidden his unwrapped presents in the closet with Annie’s food. Quinn was the first on up this morning and when he fed Annie her breakfast, he cried out. “I’ve seen my presents, now my birthday is ruined.”

We try to salvage what we could of the presents to make it fun. I think Quinn feels we fell short. Then the all boy birthday party proved to be another disappointment to him. In the past, I have always planned and executed great parties. Lots of activities that wore out the children both physically and mentally. Last year we had an elaborate scavenger hunt. I knew earlier this week that I could never compete with the party last year.

The ‘all boy’ party was a mistake. I realize when I watch the other boys play that Quinn is not a rough and tumble boy. He is sensitive and empathetic to others. When he saw a little rough play that lead to a little bullying, he got upset. I think having a big sister has had a big influence on him.

Tara and you save the day and get the boys to play less aggressive games while I talked Quinn into coming out of the tree that he hid in and then out of his bedroom. By the time I got Quinn back to the party, Tara and her friend Lindsay, had the boys playing a word association game … of all things.

This was the pivot point to the party. Things got better and the game that you invented: ‘Coin on a Stick’ was a great hit. By the end of the party, he was having fun and the day ended well

Sunday May 9 – Deja Vu … all over again. Rehab revisited

It’s been at least a couple of days since you have cried.

The last few days have been easier. I think it is because that, while I haven’t accepted your smoking, I have accepted that it must be your battle, not mine.

Quinn’s fish in the pond are mysteriously missing. I wonder if a predator has been at work. So the children and I spent the morning cleaning out a tank to house some replacement birthday fish.

We visited Mum today at the rehab unit in Pictou. It is a smaller facility then the NSRC in Halifax. Mum is upset already with the care she has gotten since Friday when she moved there. She was isolated until the MRSA cultures came back. So we had to gown and glove to visit. We were allowed to bring Mum’s dogs, Poppy and Tilly. They didn’t have to gown and glove!

Visiting rehab again seemed wired. You and Mum exchange stories about your hospital experiences to date.

Monday May 10 – Making Connections

We opened the bank account today for the SMC program. You had the bank clerk in stitches with your comments. I love to watch you make friends so easily. It is a real joy of mine. It is a talent that, I think, has been enhanced by your stroke. I know that sounds weird, but it’s true. You act like you have nothing to lose, you are an ‘open book’ as you say and you reach out to people. I think it helps you feel more human.

Tara and I went to see a psychologist – we put our heads together to think of ways that you can connect with the children.

I think that in time you will be able to make connections easier with the children. Your humour and sensitivity is still there. I think it must be like learning to walk again. It will take a little time but you will be able to do it … just a little differently.

Tuesday May 11

You woke this morning with a stabbing pain in your back. I’m concerned that your core muscles are weak and that your spine is at risk. I think it’s your sacral iliac joint that is loose. I don’t know how to help you with your core strength. So many exercises that are used to increase core strength require some strength on both sides.

Wednesday May 12

Tonight I write an email and mail it out to all the people on our email list who have visited you in the past or expressed interest in visiting. I made a plea for volunteers to help with the visiting schedule. I know that the energy that I expend on organizing and worrying is not sustainable. I know that I have to ask for help.

I’m not good at asking for help. I have learned over my adult years that asking for help is not a sign of weakness, but a sign of strength. But it still goes against my default button of being fiercely independent. Lately, whenever my default button flashes in my mind, asking to be pushed. I think about your loss of independence ... the empathy, I feel for you, forces me to seek help.

My email looked like this:

Chris and I would like to thank all the people who gave us support in our journey since August. Your words of encouragement and strength as well as practical help has been very special to us.

As of April 23, Chris has been home. I had been looking forward to this for a very long time. I thought that this would be the end of our marathon ... but it's not. It's the beginning of a new leg. Now that we started a new leg, we find that we need a new type of support.

I had thought that Chris being home would be easier then in the hospital. The first two weeks were strained with emotions and schedules. The pace has taken it's toll on us. I realize now that this is not something that we can do alone. They say that it takes a village to raise a child ... well it seems that it also takes a village to help heal the weak.

Chris can not be left alone for any length of time. The left-sided weakness along with the blindness and left neglect leaves him at a severe risk of injury. Thankfully we do have homecare support come into our home for 32 hours a week (M,W,Th, F). I am hoping for more hours so that my whole work schedule is covered. The home care support leaves at 3 pm each day and I don't finish work until 4-6 most days and later on Tuesdays. There is no homecare arranged for Saturdays and I am scheduled to work the occasional Saturday.

This situation will change once we find a support worker who we can hire through a provincial program called 'Self Managed Care'. This program helps provide funding for 32-40 hours a week.

This is where you might be able to help. We are looking for volunteers who can bring a positive attitude and energy to Chris and might be able to visit with Chris during the following times:
Tuesdays: 4:30 pm to 8 pm
Wednesdays; 2:30 - 5:30 ish
Thursdays: 2:30 - 5:30 ish
Fridays: 2:30 - 5:30 ish
and the occasional Saturday 9-3
If you can't visit at these times ... that's OK, any visiting is good and benefits Chris' physical, emotional and mental health.

This need will be long term. The doctors feel that there will be minimal improvement at this point in Chris' recovery. I hope that if we can have a large enough list of volunteers, then the commitment from any one person will be manageable for them. If you have children, bring them along. Chris loves children and so do our children. We have a great backyard that is very 'child friendly'.

Our Deep and Sincere Thanks for All the Love that has sent our way.
Gwen and Chris

I found out today that we have no one to stay with you on Friday. Once again, I am scrambling to find someone to hang out with you at the last minute. I am tired tonight. I was feeling sorry for you and for me. I just want to stop the world from turning so I can catch up.

Thursday May 13

I have been frustrated with my attempt to find candidates for your self managed care. Things always seem to fall into place for no reason. Today was no exception. On my way to work today, Annie and I walked a different route then we usually do. It wasn’t a conscious decision, it just happened.

It’s a beautiful morning and my thinking is clear. I have an epiphany of the day: Rest is something I have to prioritize. I have always thought of sleep is just something that happens when you can’t go any more and before you have to get up and get going again. I was wrong.

Like with most things in my life, if I prioritize them, they get done. Saturday, the first thing on my list “To do today’ is sleep in. It seems ridiculous that I have to prioritize this but if I don’t, it won’t happen and I need it to happen. I am getting drained with worry and schedules.

I want to stop the world from turning for a few minutes so that I can catch up with everyone else. I feel like I am constantly trying to gain a little control in my life but every time I manage to control one aspect, another aspect starts to do crazy things.

I have also been foiled in locating someone to fill in on Friday afternoon. But happenstance happened again. I had came to the conclusion that I would have to re book some appointments Friday afternoon so that I could go and get you and bring you back to the animal hospital to wait for me to finish work. Just as I was going to talk to Cecelia, at work on the front desk, I meet Trish at the front desk.

Trish and her brother, Mike, are wonderful doggy people who had moved here from Calgary a few years ago. Trish is an EMT and worked, for the last little while, in a remote area in northern Alberta. She had just returned home. She has followed your story through the blog from the beginning and has been inspired by your story.

She is home now for a while with the hope that she may find employment closer to home. Mike, who is a co-provider for their dogs, has offered support to us over the last few months when he has been in with Sasha and Meeka. The two of them are overflowing with positive energy.

Trish asks how you are doing now that you are home. I smile at the weird ways things unfold at times and reply “Are you doing anything on Friday afternoon?”

It turns out that she is free! Tomorrow, you will make some new friends.

We get a few responses from the mass email that I sent out on Wednesday. Slowly gaps of days are being filled in to help with your care.

Friday May 14

Tonight I overhear you say to Trish that you feel better about smoking now that you have come clean with the confession. I cringe when I hear these words. While a confession should absolve you of guilt, it should not be used as permission to smoke.

Smoking isn’t just about you. Smoking steals time away from me and the children, it steals your health and our family’s future it even steals our family finances. Smoking is a bad choice. You have to remember that you are a good person who is making a bad choice. The addiction is forcing you to make bad choices.

Trish and Mike are fast becoming your new friends. You have a lot of things in common with them and their enthusiastic attitude is contagious to me and …I think …to you too.

Hollis came by to visit just as Trish and Mike left. The two of you talk as I clean up the kitchen. Hollis has been a bit of a coach for you. He has the uncanny ability to pop into our lives when he has a timely message to deliver. Today was no exception. This time his message had a new prospective.

“You got to just get doing things.” He said. It’s been 18 months since his stroke and if you meet him for the first time, you would not know that he almost died from a stroke. He can walk, talk, drive a car, make a meal and do many things about the his home. To look at him, you would think he is normal. But I’ll bet he has a black spot on his CT scan. He knows he does because he knows he has losses that aren’t obvious to us.

“You have a brain that you can use.” Listening to him, I realize that his challenges are invisible to us. Strangely, he sees the abilities that you do have much clearer then you (and I) and all you see are the abilities that he has that you don’t have.

Listening to this conversation from the outside makes me realize that you and I have a lot more to understand about what it is like to live in a stroke survivor’s mind. No two stroke survivor’s are the same in their losses and their abilities.

Saturday May 15 – Everything Will Always Work Out for the Best

Well, the ‘sleep in’ thing didn’t go as planned. At 7am, which represents a 20 min sleep in to me, you wanted to get up. I groggily got out of the warm bed and got you up and settled at the kitchen table. You wanted go outside to smoke. I know if I take you outside, the cool wind will blow away any chance of me going back to bed. I refused and slipped back into bed and slept for another hour and a half!

You did get outside while I was asleep. Lucky for you, Tara is a morning person, she helped you outside. The children are becoming very helpful with some of the day to day tasks that involve your care. Tara has learned how to assist you to walk. It doesn’t take a strong person, just someone who can stay focused and watch your left leg move. Quinn is your water boy. Actually he is the ‘other water’ boy. He has been helping you with the urinal since Christmas.

Later today when we were talking, you were down. At one point you didn’t want to talk to me. I had just made lunch and you didn’t want to eat it. Quinn witnessed this exchange and looked scared. I pointed out to you that our exchange was being witnessed. You looked at Quinn and then sat down at the table and ate lunch.

It’s hard to continually be thinking about other people’s needs when you have so many needs yourself. I think in many ways we were blessed with the children at this time in our lives. Without them as daily reminders that there is a world outside of your imprisoned body, I think I would have been lost a long time ago.

You have been complaining about being cold a lot lately. I wonder if it is just because your metabolism has changed from that of a marathoner to that of a very inactive person. I am worried that it maybe the result of the brain injury. In the early days of your stroke, you had a difficult time maintaining a normal body temperature. Perhaps this is a legacy of damage to your hypothalmus and maybe be causing hormonal changes, or maybe a side effect of your medication. There I go again, over analyzing things to the point of worry. I know it serves no purpose – but my mind takes me there anyway.

You were so cold, you wanted me to hug you and hold you. I did but it just didn’t seem like a good long-term solution. I suggest that you get into the hot tub. You have been in it a few times before. It’s a little scary getting you in but do-able. This is the first time I did it by myself. The entrance into the tub went smoothly, but you cried while you were in it. You were scared but you couldn’t tell me why. Is this anxiety a legacy of the stroke too?

We talk and I tell you how saddened I am when I see you not trying to do things. I know that I have a tendency to wait on you and I have to check myself consistency so that you do things for yourself. Earlier today, you expressed a need to use the urinal. When I suggested that you use the toilet, you insisted on the urinal. I was frustrated and viewed this request as the ‘easy’ route for you. I sad, “Urinals are for the hospital. You are at home now, you should use the toilet. It is good exercise to walk down the stairs to the toilet.” You took my comment as a criticism. This hurt your feelings. You were down the rest of the afternoon.

After the family hot tub session, I got you out and dried and we cuddled on the sofa. I told you that when I see you trying to work at your recovery, I feel strong and I can do anything and everything that it will take to make things happen, when I see you give up and stop trying which includes the smoking, I feel completely drained of energy ...I want to craw into a hole and die.

I can not let your attitude to your recovery affect me like this but it does and I don’t know how to overcome it.

My biggest fear is if you decide to quit trying. “What will happen to me and everyone who is counting on me?” You ask.
“Ultimately” I said, “I have to believe that everything will always work out for the best. This thought has always carried me through many tough times.”
“Don’t you mean everything happens for a reason?” You said.
“No!” I replied, “Things always work out for the best is about my attitude … which is the only thing that I can have a little control over. ‘Everything happens for a reason’ suggests that control is in the hands of someone. What if things are random and only the attitude you adopt is controllable? It boils down to you having only two choices.”
You finish my thought. “To quit or to try.” You are quiet after this thought permeates your mind. “Maybe I will go to bed with Quinn tonight.”

I am so pleased to hear this because few weeks ago you had mentioned that one of your strategies to quitting smoking was to go to bed early with Quinn so that you could sleep away the urge. You and Quinn are in bed by 9 pm. I check in on you at 11pm and you are solidly asleep. I even try to wake you gently, but you continue to conquer your urges with sleep.

When I tucked Tara into bed, I find her looking at a photo album that dated back to when she was 3 to 5 and Quinn 1 to 3. “It’s fun looking at the pictures.” She says. “I wish I was that age again. I had so much fun then.”

It’s very sobering hearing your ten year old reflect on her life when she was five and wish she was that age again. Oh boy, it’s hard to imagine whether we will ever have that kind of fun again.

I just have to keep the faith. Everything will always work out for the best.

I got a phone call from a girlfriend from veterinary college. Marnie and I were roommates and shared many university experiences. Tonight we shared stories about our families and how we are coping with the obstacles put in our life’s way. Listening to her voice transports me to 25 years ago. Her bright quick talking nature is unchanged over the years. It’s good to hear her voice from our past and thoughts about our present. Talking to her reminds me of the advice I gave to you earlier tonight.

Everything will always work out for the best.

May 1 - 7 - Tattoo Day to Tabacco free day?

2010-05-19T23:38:00.002-03:00

Saturday May 1 - Tattoo Day

You get your tattoo today. When I drop you off at the tattoo place, the place smelled of smoke. The tattoo artist, also named Chris, smokes too. He is young and in the prime of his life. I screamed at him, in my head, to stop doing such a self-destructive thing. Even if he heard my thoughts, they would not have dissuaded him. He is at the immortal stage of human growth and development ... too young and naive to think anything like a stroke could happen to him.

You like Chris, you said he seems to know a lot for his age. Mmmm, I wonder...

It’s a nice day, while you are getting decorated, the children and I do errands. The tattoo was supposed to be done in 2 hours … four and a half hours later, the masterpiece was done. It is big but it does look good. You are happy with it.

You had no tears today … that’s progress.

Sunday May 2 – Saint Andrew’s Feels Like Home

Tomorrow is the first day of ‘No Smoking’. You want to talk to the congregation at the church and apologize to them … your friends, for your deception. You feel strongly about this. I suggest that you talk to Jay and see what he thinks.

At the church after the service, Jay and you talk about your role at the church. There are so many jobs that you know how to do and what needs to be done. You and the church have become comfortable friends, getting to know each other and what you both need. “I know where everything is, I know the oil has to be changed in the organ motor, I know how to look after the boiler and where things are stored. I know a lot but I don’t know how I could do these things.” You sigh.

Jay has an idea. He wants to convert a storage room into a library for the congregation. He thinks you would be a good guardian of the books. “You can come in a few times a week, put the coffee pot on and talk to people who come in and look after the books.” I think it sounds great. This will be a way for you to contribute to your church and community and have social contact and feel needed.

You have to get used to the idea. The idea of not working again for money. “I thought I had 10 to 15 years of work left in me.” I suggest it is a promotion. You think differently, You think it’s a pity position.
You love Saint Andrew’s Church. When you were talking to Mildred on the phone today, you said this and you added “St Andrew’s feels like home.”

It’s a garden afternoon. I realize that when we are home, communication is really important. In the summer, I love to be outside whenever I can and play in the garden. You are not a gardener and you can’t imagine how the garden can hold my attention for so long. To facilitate communication, I dig out the walkie talkies that you gone a few years ago.

As I garden and pull weeds, we chat over the walkie talkies. I smile at the thought of the frequency being open to eavesdroppers. I wonder what they think as we converse. Chris and Terry come over and hang out with you on the Sunday deck. Soaking up the sun that you have been deprived of all these past months in the hospital. I bet it feels good to feel the sun. The source of energy for life.

You soaked up a lot of sun. At the end of the day you looked a little crisp on the exposed body parts. At least only the burn on the right side actually hurt!

Monday May 3 – A No Quit Day

You smoked first thing this morning. The slippery slope continues.

OT and PT come to see what you will need for your home based therapy. Details are discussed but the process seems to go very slowly. After waiting so long to get you home, I want things to move yesterday.

With the effort to stop smoking, we need to help you fill your time with other activities. I had hoped that some physio would be done today. But no. We will meet again in 2 weeks to train the homecare team, meanwhile they can not do these activities with you. I find this frustrating and counterproductive to you mental and physical wellbeing. Your days are very long since you have been home. It’s no wonder that you felt the need to ‘fill the unforgiving minute with’ … cigarettes.

The OT had discovered that there was a program for people with depression, at the mental health clinic. She is going to look into this to see if it is something that would be good for you now.

We see Dr. Feltmate. She gives you lots of sound advice. And a prescription for the nicotine patch. She says, quite wisely that you have to really want to quit smoking but you can’t wait until you are ready to quit. This may sound like a contradiction but it isn’t.

Nicotine has a strong hold over you. It’s voice is loud and clear in your head and it dominates your thoughts. I can see this from the outside but you can’t see it. The voice manipulates you into thinking that you need to smoke. It is brain washing you. You try to pick fights with me to fuel an excuse to smoke.

You visit Donald today. It’s been two weeks since you last saw him. Donald seems lost in his own world. He doesn’t lighten up like he used to. It saddens you to think that you are losing a friend.

After much discussion about the patch, you decide to get the prescription filled. I was so pleased that I even threw in a 4X4 coffee. You wanted more … an unicorn charm to symbolize the effort that you are putting forward to quit smoking. You want the charm now so that you will stop smoking, I want to wait and see if you can do it before we mark the occasion with a charm. You are angry that I wouldn’t cave to your demands.

We strike a deal. After the children are in bed, I took you outside to smoke your last cigarettes. At bedtime we place the nicotine patch on your right arm. As I put on the patch, I pray to myself that it will help you.

Tuesday May 4 – One Patch and Several Cigarettes.

It was a tough day today.

It is stroke club day. It starts at 10 am and goes to 2 pm. You drive into work with me and the Accessibus comes to pick you up from the animal hospital. While you were waiting for the bus, you went to the handicap fitted washroom. I gave you a buzzer to call me when you were done. The system would have worked well except that you thought that you could transfer to your chair yourself. You wanted to help out and make my life easier. The transfer started OK but ended badly because one of the wheelchair brakes were off. You fell and tightly wedged your body between the toilet and the wall. There you lay pinned between the two and unable to reach the buzzer.

My coworker, Sophie, heard your panicked calls and came to get me out of the appointment. You were very shaken up and felt sore and even more helpless then you did before. Your response to this stress was to want to smoke. You have the patch on.” I point out. You don’t care. “I have to smoke.” You say.

I try to explain that the voice of addiction is so powerful that it talked you into doing something you were not able to do and now the voice wants you to feed it with a cigarette. “This is not your choice this is the addiction’s choice.”

Thanks to Sherilyn and Cecelia, they help me calm your fears and help me convince you to go to the stroke club.

After you left, I tried to get my head back into my work. Thankfully, the clients I saw this morning were so nice and understanding. I got a lot of emotional support from them that fed my soul and built it up. One of my clients, who is retired, even offered to help out with you needs and she doesn’t even know you!

I think that this is one of the many advantages of living in a small town. People instinctively care about each other, they don’t even have to think about it. Caring is a natural instinct that just happens. I think that this quality of human nature is lost as the size of a community increases.

When you came back to work, I asked how your day was. “Are you going to be mad at me?” you ask. Oh no, my heart sinks. I know where you are going with this. You bought more cigarettes and smoked a couple of them with the patch on. I’m sad and disappointed. I don’t know what to say to help you through this torment.

I feel your failure. I know that the ‘real you’ is hiding in your mind. The real Chris wants to quit and take charge but the voice of addiction is strong and overpowers you voice. You are not ready to quit and I am powerless to combat the addiction for you. Only you can do this.

I’m on call tonight and I got called in at dinner time and again later in the evening. At dinnertime, I say, as I leave, “Quinny, you are in charge and it would be lovely if the dinner dishes can be cleaned up after everyone is finished.” When I get home the kitchen is abuzz with activity. Spearheaded by Tara, the dishes are cleared away, the dishwasher loaded and the food put away. “Wow, what teamwork!” I marvel at my family.

Tara worked on her homework and you and Quinn read together. To me, this picture looked almost as it did one year ago. It felt comfortable and familiar. This moment may have seemed ordinary on the surface but it felt very special to me.

At the children’s bedtime, I got called into work again. You want me to take you outside so you can smoke, but I convince you to get settled in your chair in the mancave while look after the sick kitty.

When I get back, you had found the Angels game on the TV and fallen asleep. I don’t have the heart to wake you, because I know if I do, you will want to go outside to smoke. I let you sleep until bedtime.

Wednesday May 5 – The Addictive Voice

The addictive voice is powerful and loud. It dominates your brain and out shouts the other voices in your mind. I regard the addictive voice as a mistress. The other woman. She wants to steal you away and destroy you and our family. I can’t let that happen.

Until recently I didn’t even know ‘she’ was there. Now, I have to get used to the voice whispering empty promises in your ear and manipulating you so you won’t listen to your own true voice.

“I am here, I am here.” You said about a month ago. That was before the smoking got hold of you again. I feel powerless to help you find your own true voice. Sadly, I think all I can do is be supportive. When I hear a peep come out, I try to help draw it out more. Weak peeps like: “I want to eat blueberries.” And stronger peeps like “I want to run again.” And “I don’t want to die.”

Tonight, you wrote a little write up for the church newsletter. In it, you describe the gratitude you feel towards the people of the church – your friends and your family. You ask for forgiveness for your dishonesty. You say that you aspire to be the person that they thought you were.

I am touched by your words and realize that in a small way this is part of your recovery.

Thursday May 6

Today you are grateful that I’m not giving you a hard time about going outside to smoke. It’s raining today, so I wheel you out to the garage to smoke. You swear to me that you will find the strength to quit.

Ann drops by with a chicken dinner for us. She sees you in the garage smoking. You know Ann from the church and care what she thinks of you. You apologize about the smoking and that you smell like smoke. You tell her of the offer that Rev Jay had given you. A position at the church.

Last Sunday, when Jay told you about his idea of establishing a library for the congregation, you were lukewarm to the idea. Since then you have warmed up to the idea. You tell Ann about it. You would have a job, a purpose and be able to get out and meet people. The pay is the satisfaction of making a difference.

Since Sunday, you have brought up the idea with different people as if bouncing the idea off of them to see how it would fit you. You are a little concerned about the actual job part. The met and talk with people part will be the easy part. I told you that even wanted change is difficult at times. The change that you have experienced recently certainly qualifies you for the change part but you wonder if you are qualified to run a library.

Tonight, when you tell Ann about the church library, you say “I will do it because I need to do something.”

Friday May 7

Quinn lost his extra tooth. Quinny was bless with an extra baby tooth and as it turns out, an extra adult tooth too. I think Tara is a little jealous that the tooth fairy will get to visit him an extra time. I advised her that it’s not that great because one of the extra teeth has to be taken out by a dentist and we have to pay the tooth fairy for it!

Quinn says his mouth feels different. “Change is strange” he summarizes. “As you grow, you have to get used to changing body parts.”

As you grow… I should have said as you age. Change is strange

You enlightenment of the day you share with the homecare worker. “If you put ‘cluster’ in front of any swear word makes it sound so much better.”

I spend the first part of my day at my psychologist. I asked about the tendency to fixate on things. Perseveration, she called it. I noted that you often get stuck on the subject of smoking. I wanted to learn more about how to deal with this behaviour.

She suggested that my role is to keep you safe. If I make a stink about smoking, then it just becomes more of a topic for you to fixate on. If I drop it and take a casual approach to it, then you may be able to move to something else and it will be easier for you to let go of the habit.

“Build trust” she said. “Let him go outside and smoke.” The thought behind this is if you get outside when you want, then you may not smoke so many cigarettes at a time. She said. “When the topic of smoking comes up, just change the topic.

Hopefully the fixation will end. “Usually, this happens in about six weeks.” Of course that is in the non-stroked mind. I am not going to hold my breath. I can’t imagine you letting go of the subject in the near future.

Friday April 30 – The Nicotine Headache

2010-05-16T22:56:00.000-03:00

You woke with a headache today. This causes you some anxiety. You worry about another stroke, I worry that it is due to nicotine withdrawal. A few cigarettes later, and we have a winner. The nicotine does of the cigarettes ‘treated’ the headache.

Janice and Emma came to visit while on a mission to find a prom dress. Janice gives you the tough love talk. The type of talk that only a good friend can give. She points out that you are not the only one ‘trapped’ because of the stroke. As I am listening, I am wondering who else do we know who is trapped as a legacy of the stroke. Then I hear “Gwen is trapped too. She can’t go anywhere or do much because of my commitment to you and your recovery.”

I don’t feel trapped. I haven’t felt trapped by your stroke. If I did, I would feel a burden. I never want things to get to the point where I feel trapped. The day I feel trapped, is the day that you will fell like a burden.

Monday is your quit day. You have an appointment to see Dr. Feltmate to see if she could help.

Thursday April 29 - From Six to Twelve

2010-05-16T22:55:00.000-03:00

Six cigarettes yesterday. Today it will be twelve. You are back up to your pre-stroke level of smoking. I change tactics on you.

“What would you do if I engaged in risky behaviour that could leave you a widow and forced to raise our children single handedly? How would you feel about that?” I look at you intensely. You won’t look at me like I am scolding you. I answer for you, “You haven’t had to think about that possibility, because you had the stroke. While you were so ill and near death I did think about it. I thought about being a single parent constantly and I was very scared.”

When I told Tara the other day that you starting to smoke again. Tara was shocked and scared and sad all at the same time. The expression on her face haunts me just like the image of you smoking out on the deck. Our children need two parents. You have to remember that you are a father. It's ’he most important job in the world. And what is more important, I know that you love being a Dad. Start acting like a father and think about your family.”

You are quiet and want to go to bed early. I think that my talk has made you think. I think that I need time to get used to the idea that you are a smoker and you need time to adjust to our new life.

Just before bedtime, you played ball with the children. It was nice to see this interaction. I guess that we will just have to see how this is going to play out for you.

Wednesday April 28 - Six Cigarettes and a Three Page Letter.

2010-05-16T22:54:00.000-03:00

I couldn’t sleep tonight so I journaled. I emptied the bad thoughts out and tried to find my way to peace. I don’t know what to do. I don’t know what to say to help you see the your self-destruction.

Last night, when we locked horns, I said, I knew that it would be best for our family if you didn’t smoke, but I knew that I couldn’t make you stop. I am so frustrated. I don’t know how to get you to want to quit smoking. Well actually I could make you stop but it wouldn’t be your decision and it would be a rather poor basis of our relationship. I plan to call your psychologist to see what her advice is in the morning.

I awoke again at 4:30 am. I am angry. I know it is redirected anger. I am really angry at myself for falling for the mulligan ploy. I should have known better. Now, the nicotine is finding a home in your body and once it settles in … it will never want to leave.

My anger turns to the NSRC. I lay in bed for about 2 hours thinking of all the issues that I have with the NSRC. I spent the next few hours writing a letter about our experiences at the rehab. It was a long letter and covered a lot of areas of heartache. I figure that if I am going to be angry, then I should use it for Good not Evil. Even redirected anger is better directed at the people or person who is best suited to make a difference.

I carefully compose a three page letter. I make various suggestions and hope that it will not fall on deaf ears.

In the morning, I called your psychologist at the NSRC. She is very understanding but also somewhat useless with advice. “You can help him go outside and smoke or you can make him do it himself and he might get hurt. There is no right or wrong answer.” Either way you are hurting yourself. She suggests a compromise. “You could give him coupons for trips outside and allow him to trust you so that he is not stressed about when he is going to get outside again.” I like this idea. It could limit the number of cigarettes that you smoke in a day. I promised to try this and we discuss how you get fixated on things and how best to help you get past something that you are stuck on.

By the end of the day you smoked six cigarettes.

Tuesday April 27 – Lose the Battle … Win the War?

2010-05-06T22:55:00.000-03:00

The psychologist said, “Don’t make smoking a battlefield.” So instead I have tried both logic and feelings to explain the negative impact that smoking has on our family. I have even shamelessly tried manipulation. I have lost every time. I don’t know what to do to any more.

I even ask you what I should do. “I want to do the right thing for our family and I believe that is to get you to want to stop smoking.” I say to you. “What should I do to do the right thing?”

I could physically prevent you from smoking. That’s not my first or my second or my twenty-ninth approach, but I did try it too and that just led our conversation to an argument and from an argument to silence. It didn’t work.

I tried bargaining with you over the tattoo. “Wait 29 days of no smoking and then get it.” I suggest. You wouldn’t take me up on it. I refused to help you outside. You tried any way. I was right behind to pick you up off the ground. You were shook up but you still wanted to smoke.

You said on the weekend that you wanted a mulligan for a day. Then it was two days. Now it’s been four days of smoking, one cigarette for the last three days and two today. By enabling your mulligan, I have allowed the slippery slope to take over.

I should have never caved to your way of thinking. Your logic sounded good at the time. You said that since you never chose not to smoke eight months ago, then allowing you a mulligan will enable you to officially choose not to smoke. I am mad at myself because I knew that the best defense to not smoking was that you had a streak going. Now the streak is gone, your willpower is gone.

You think I hate you. I try to explain that I don’t hate you … I hate the smoking. There is a big difference. I never knew you as a smoker. I knew you as a wonderful father and friend and husband. That is who I love and who I want you to be now. You created expectations for me by concealing the smoking. I don’t think of you as a smoker.

The mental image of you with a cigarette in your hand or hanging from your mouth is burned into my mind now. I can’t shake the picture loose. I don’t like the picture and I pray that Tara and Quinn never see you like that.

I have to give you credit. We agreed last week that there would be no smoking in the house. When I refused to take you outside to smoke tonight, you could have lit up in the kitchen ... but you didn’t. And last night, when I was especially stressed out about Mum not doing well in the hospital, you choose to be a wonderful husband and said that I should go see Mum and you promised to stay in bed and not smoke while I was gone. You were true to your word.

Why do I hate smoking so much. Maybe because my Father smoked a lot. I believe that the cigarettes robbed his mind from us in the last years before his death. I don’t want our children having the same experience with their Father.

Monday April 26 – First Homecare Day

2010-05-06T22:44:00.000-03:00

Today was the first day of the official homecare. The worker you had today was very nice, but her hands were somewhat tied. She wasn’t able to do much with you. It’s no fault of hers or yours. It’s the system. Until a bath assessment can be done, she can’t get you showered. Until the PT and OT train her and her colleagues they are not allowed to perform any therapies. The homecare worker has to be creative to find things to do with you that are helpful.

In the afternoon, you visit Donald. His 90th birthday will be in July. He is tired and seems a little confused. You are saddened by this. I understand how you feel. It’s hard seeing a good friend shrink away from living.

As we leave you stop to talk to another resident. He is your age and has been in the long-term care facility for many years. He has seen a lot of people fade away over the years. He has known Donald for some time and has seen a difference too.

Some wise words come from you as the two of you talk. “What happens to you is up to you.” A long-term care facility would disable you further. I can’t image visiting you in this place with the children. I found it hard to visit my father as an adult, I can’t image what it would be like for children to visit their father in a nursing home like this.

There are moments that you think this is where you should be. No! I scream in my head. I couldn’t bare that. You have to be home with us. As long as it’s possible, I will do anything to have you home and give our children a shot at a normal family life.

I will no let you give up.

Sunday April 25 – We are Dominos … surrounded by Pillars

2010-05-06T22:42:00.002-03:00

This morning is worse. You are very contrary. I had hoped that the mood you were in last night would have melted away by morning. It hadn’t. In fact, it got worse. Now you not only refuse the your medicines, but you don’t want me around you.

Tara tries her best to bring you out of the slump. She did an old Knock Knock joke that she made up when she was three. It always got a rise out of you. “Knock knock” “Whose there?” “Old MacDonald had a farm EIEIO.”

It didn’t work. She resorts to the internet to find jokes that might made you laugh. No luck. She gives up. Quinn starts on his approach. He lays beside you and cuddles and talks softly to you in soothing tones like a parent to their baby. “Quinn’s the only one who really loves me.” You say.

I felt desperate. I didn’t know what to do. I reached out over the phone. I though of the church and the people who have stood strong behind us all these months. I thought of them and reached out.

Within the hour, Janice and her husband, Les, were by your side. Les, a fellow baseball player from many years ago, gave you the type of pep talk that you would have loved if this were a baseball game. Janice sweet talked you into taking you medications. You rallied a little. A little while later, Hollis came to your side to try to bring you back to reality. He talked about you needing to realize that although the effects of the stroke really suck, life does go on and the sooner you comprehend this the better.

Later, in the afternoon, the minister from the church Jay and his husband, Marty, came to talk to you. After sharing thoughts and feelings with you Jay asked you to promise two things. The first was to remember that you are a member of a family. You have to let the needs of the others in the family come first. Part of your role is to be a giving person. Secondly, when you are frustrated about the things you can’t do, you should breakdown the problem and learn how you can do it in a different way that works for you.

You seemed much better after this talk. You even listen when I tell you about my worries and fears. I tell you that when you are good emotionally, I am strong and can take on the world. When you falter, I grind to a halt and cannot muster the energy to even think about the next step. I need you to be strong.

“You do have a choice … the bigger choice then anyone of us in the family can have. You can choose to be an inspiration or a burden.” These two paths are very different and they are determined by the little choices that you make. You can choose to be a smoker and a 4X4 coffee drinker and doughnut eater who refuses your medication. If you do then you will be an overweight, angry and depressed man who treats his feelings with cigarettes. No one will want to be with you. You will be a burden. OR You can made different choices that enable you to make the best recovery that you can make. You will be an inspiration.

The day ended pretty well. We talked and analyzed what happened to make the second 24 hours of your home life so hard. We both feel much better about the future and communicate and work things through.

We have to thank the outside support that came by our side today. They are the only reason that we got through it and are stronger for it.

Saturday April 24 – What are we going to be? Dominos or Pillars?

2010-05-06T22:42:00.001-03:00

My lazy Saturday that I have been dreaming of for a long time, started out great. I had a shower and sat on the edge of the bed, contemplating whether to trim my toenails or not. Something that I have never ever given much thought to in the past, even before your stroke, but for some reason it seemed important to think about it today.

Today, the first day of being together again officially as a family and I’m thinking about my toe nails. Well the moment passed quickly, The phone rang. Whoever called didn’t stay on the phone to get an answer but Tara and I both picked up the phone to take the call. The result was that we were talking to each other on the phone … Rather odd since she was in the next room! She reminds me of all the things she has to do. There’s the birthday present and party as well as the choir practice this afternoon and the performance tonight. I sigh and cut the nails short as she rambles on. Then you pick up another phone and butt into the conversation. “Don’t forget I want to visit Donald, and go to the bank and the tattoo place. We need things for the fish and we have to registrat Quinn for baseball.”

The only thing I wanted to do today was to get groceries. We didn’t have time to do this.

It was a very busy day. I can’t believe we got through it. We very nearly didn’t. I started the morning by forgetting your wheelchair. When we registered Quinn for baseball, you had to walk into the building. Although it had a ramp, it wasn’t a well-designed ramp and the access to the ramp was not ‘mobility-impaired friendly’.

How crazy is that? A ramp built for the mobility impaired that the mobility impaired can’t get to. I was angry at the stupidity and wondered how often we would come across this situation.

We dropped Tara for the birthday party and Quinn at a friend’s place. When we got to Donald’s we realized that your wheelchair was broken. Your brand new wheelchair. The chair that we were forced to rent because the paperwork wasn’t done in time to get the chair that was ordered for you. Even though the staff at the NSRC had 14 weeks to make this happen. We still were forced to rent a chair.

My guess was that we had to wait for the wheels to be harvested off the wheel tree before the chair could be made. I was angry about this too. When I discovered this yesterday, I shoveled the anger under some other thoughts and tried to forget about it.

It didn’t work. When the chair broke, I couldn’t suppress my anger any more. It flew out of me. The anger that I’ve been keeping stuffed in all the corners of my mind comes springing out of my mouth.

You did what you usually do when I get stressed, you tried to make a joke of it and lighten me up. It usually works … but not today. Today, I had too much anger and even your best attempts to curtail it would have failed.

I took the chair to two local drug stores on town that deal with wheelchairs. I had hoped that someone there could fix it. Of course, it’s Saturday, the person who could fix the chair wasn’t there on a Saturdays. I tried calling the company in Halifax where the chair came from. They were closed. I left a searing hot message about the “piece of s… contraption you are renting us that you call a wheelchair”. I was still angry.

Thankfully, the lady who worked at the local Lawton’s drugstore and homecare center, has a marvelous dog who is a patient of mine. When I saw her familiar face, I tried to explain the problem and finished by bursting into tears with frustration. She jumped into action and the next thing I knew was she dug out a wheelchair, just your size, that we could use over the weekend … at no cost.

My outburst of insuppressible anger affected you. I think you felt like you failed me by not being able to rally me out of my strong emotions, like you could always did in the past. You thought that you had lost another talent because of your stroke.

The whole chair ordeal ate up the afternoon. By the time we got to the tattoo place, there wasn’t enough time to get the tattoo. You were angry now too. Angry and sad and disappointed and you felt like you weren’t important enough to get the tattoo. Even thought I explained that the broken chair was the reason for the lack of time, you were convinced that I felt it was a low priority to me.

The fact that I never did get groceries today or visit Mum, who was moved to the Colchester Hospital yesterday, my only priorities, didn’t pacify you at all.

You wanted to smoke. A ‘mulligan’ you said. You explained it by saying that you never choose not to smoke. If you smoke now … for a day … then you can choose to stop tomorrow and the choice would be yours to claim. The logic appealed to me. I swallowed hard and against my better judgement, I took you outside. I half expected you to consider the idea and then back off and keep the streak. But you didn’t, you smoked. I caught a glimpse of you smoking. A very foreign gesture to me. I had never seen you smoke before and I was struck by the impression the image left me.

The cigarette didn’t help your mood. By bedtime you were sullen and not talking. You wanted to go to get early. You don’t want to sleep with me. You want to sleep in the hospital bed in the family room. I get you into bed. You refuse to take your bedtime medications. You want to force me to accept your choice about medications.

You want desperately to control something … anything you choose to smoke. For the first time I see you with a cigarette in your hand and you sit out side smoking. I felt physically ill thinking of the image.

Earlier this week before you came home, I talked to the children about the strength that a family has as a unit. I tell them about dominos and how when dominos are stood on their ends side by side. They are only as steady as their weakest member. “When one falls so do the rest.” I said. “What we have to be as a family is to be pillars that hold up the roof.” I point to a house as we drive by it with pillars supporting the roof eave. “Pillars hold up the roof. If one goes the remaining ones support the roof and if town go, the remaining pillars continue to hold up the roof.”

“When Daddy gets home it will be great and bad moments. During the bad moments, it will be hard to us to hold up the roof. The family. But we will be pillars because that’s the only way we can survive. Survive with the strength and support from each other.”
At the time of my little talk, I wasn’t convinced that the children really understood what I was trying to say.

I was wrong. Tonight, as I tuck Tara into bed. She is saddened with the news that you refused your medications. She hung her head in her hands as she sat at the edge of the bed. “We are dominos.” She repeated sadly. “We are all dominos.”

If this is going to be how the first day goes, how am I ever going to get through the rest of our lives? I pray that tomorrow will be a better day.

Friday April 23 – Coming Home and Inspiring Thoughts

2010-05-02T22:27:00.001-03:00

There you were – waiting for me at the front door of the NSRC . I had said that I would come over right after my vet meeting at five. I got there five to five and you were waiting.
“I’m going to exercise and eat healthy … like blueberries.” You said smiling and reaching out to hug me.

As I pack up your things, you show me a poster. It’s the poster that you gave your PT. The Boston Marathon poster with the phrase ‘Greatness goes by many many names.’ “I don’t know why she gave it back.” You said sounding a little sad. “I was hoping that she would give it to someone to inspire.” I hugged you and said “I think she did ... she gave it to you!”

She gave it to you but with a few small changes. Beside the poster message “Greatness goes by many many names.” She wrote “Few can hope to ever run a marathon, Many can hope for happiness. My hope for you Chris is that you will be happy.” Below, she put a photo that she took of the whole family on St Patrick’s day. We were all dressed in green. All four of our heads are huddled together in a big family hug. Smiling and loving the togetherness of our family.

You were expected to only need 7 weeks of rehab initially, but you were there for 14 weeks. Double the stay. The NSRC team managed to do more with you then they initially thought that they could. We are thankful for all that they did. You had some pretty amazing team players at the NSRC.

One of the last things that I packed was a little magnet that the cleaning lady at the NSRC gave you during your second week there. The two of you had become friends and she gave you a magnet with the word ‘Believe’ stamped into it. I threw it into the bag as an after thought. As we were getting prescriptions from the nurse you spy your PT working late. You ask me to dig out the magnet. “There is someone I want to give it to.” You say. I find the magnet and hand it to you. You wheel up to your PT and palm the small magnet and reach out to shake her hand. “What’s this?” she said. “We already hugged.” When she realizes what you are up to, she doesn’t want to accept it. You insist. She agreed to keep it. And shook your hand.

The nurse had to find some other medications and we followed her to collect the last of the medication. When we get to the elevator, we meet with your PT again. She smiles and says “I know what I’m going to do with the magnet. I’m going to put the magnet on my locker door here ... it will inspire me.”

Mission accomplished. Your magnet will not only remind her of you but also that miracles do happen.

Thursday April 22 – An Old Marathon Ends and a New One Begins

2010-04-27T23:57:00.001-03:00

Today you got a sort of booster seat for your right foot so that your left leg can swing forward easily. It’s built right into the sole of your Asaics running shoes, sort of like a lift but it doesn’t extend to your heel. It sits mostly under your toes. You can move much better with the lift. Your left leg swings a little more freely with each kick.

Tomorrow you come home. My first marathon is finishing. This journal has been a very therapeutic outlet in my life. I had vowed to make a daily entry while you were in the hospital. Tomorrow, you are home for good.

A new marathon begins. It will have a different course and I sense that it will be very challenging but in a different way. A different course with slightly different rules and the finish line is not within sight. I guess that it’s more of an ultra marathon. I feel more prepared to do this one now because your team of coaches will support me too in this race.

When you are here in our home, you will need me more then I will need the journal. I must concentrate on the day to day logistics of the day, your needs and the children needs. The demands of my time and energy will increase … I have to stay focused on the unmarked finishline.

I know, occasionally, I will need to vent to the journal. When I need to empty my head and heart, I will turn to the journal and write. In the meantime I will continue to make brief notes about our marathon experience. When you are well enough to help me write ‘the book’, we can use these notes to write our story together.

I am going to pledge to make a weekly entry about your continuing marathon and progress to date. Just as your ran for 4684 days and were committed running each day, I will make a commitment too … a commitment to write.

Wednesday April 21 - We’ll Find Our Way

2010-04-22T23:30:00.000-03:00

Yesterday, I received a resume already. It came to me through the grapevine at work. The lady comes highly recommended as a homecare helper for you. Tomorrow, I will be meeting with the homecare coordinator and the nurse manager who get the homecare started.

‘Helper’ isn’t the right word. The people who are going to be in your life as your ‘support help’ aren’t babysitters, as you called them. I see them as a ‘Team of Coaches’. Their job is to coach you to make the best recovery that you can. Like any athlete or person undertaking a major event in their life, we all need coaches and mentors to help us along the way.

Your journey is no different except instead of one coach … you get to have a team of coaches. A team of people who work together to facilitate your recovery.

This team is going to be big. Many people with different specialties. There are the obvious areas like: physio and occupational therapists, psychologists and doctors. But the bigger and the most important coaches on your team are the people who coach you every day. The homecare workers and the people from the community will coach you in some of the finer details of your recovery.

There is no professional service that can do this type of coaching because it comes with a heart.

Annie was full of energy this morning. It is very uncharacteristic for her. She acted more like a Jack Russell Terrier then a Good Ol’ Cape Breton Farm Dog. She chased the cats relentlessly. They had slipped outside at 3 am this morning when I had to go in to the animal hospital for an emergency. They probably smelled like they were hunting.

Poor Annie, she has been so ripped off lately, forgetting her birthday, being taken out for token poop and pee walks – some birthday yesterday. She needed a real walk …a long birthday walk.

It was a beautiful day. When I realized that I didn’t start work until a little later in the day, I looked at Annie and Annie looked at me and we decided to go for a good long walk … just like in the old days.

It was great walk. My energy was good. I even ran for a little way. I haven’t run in a long time. Today the air was just right and the warm sunlight in my eyes made me feel little running. Some people are not designed to run. I’m one of them. But today I didn’t feel like a prisoner of my body, I felt free to run and I did.

Last year when I ran with the children in the fun run, my knees hurt for a week. So don’t get excited …let’s see how I’m holding up in 24 and 48 hours before I make any commitment to run again.

We even found our favorite type of path … one less traveled by. Annie found good smells and tracks and I found fresh air and clarity in my mind. Annie even spied some deer, but she resisted the urge to chase the deer and stayed by my side. What a good civilized dog.

I am recharged for the rest of the day.

Tara had another music festival competition today. She did well and sang beautifully. She didn’t seem as nervous as she used to sound in the past. I think she is growing up.

You sound good on the phone today too. You joke and praise Tara for her accomplishments at the music festival. She giggles and laughs and acts a little ‘nutso’, as you call it, on the phone. Both Tara and Quinn squeal with delight at the thought of you being home in two days.

You had another good day with your therapists. Tomorrow is your OT’s last day with her. You are going to give her something to remember you by. You want it to be your ring with the ‘Unforgiven minute’ inscribed on it. But you are prepared with a back up plan if she refuses it … a Boston marathon running hat.

Today you got her to read the inscription on the ring. Her young eyes can read it. The two of you discussed the meaning. She suggests it means if you are dealt a raw deal, you play the cards anyway and make the best of it. You heartily agree. Now you really want to give her the ring. We will have to see if she will accept it or not.

You said, “Tomorrow is my last shower!” “Hopefully, it’s not your last shower because I’m not sure I want you home if you don’t plan on staying clean!” I correct you. “Right, well, it’s the last shower with my male OT!” This has been the hardest part of your therapy. You hate shower day. I hope that you come to like it more when you get home.

A fellow lady patient, a smoker, who is next door to your room, asked you for a cigarette today. You gave her a cigarette. Not just one, but you gave her the whole unopened pack of the du Maurier. I think you could hear my smile over the phone line when you told me.

You confess to me that you are a little worried about your life at home and how it will be. I confess that I’m worried too. “We’ll find our way … we have so far … We will have challenges for sure but we will over come them – We just have to believe.“ Giving away half of your smokes is a big step.

Tuesday April 20 – Heroes You Haven’t met Yet

2010-04-22T23:25:00.000-03:00

This morning, I wake to the sound of the radio. Don Connolly is interviewing Rev. Diane Tingley and her daughter. I sleepily lay in bed and let the words drift in my foggy head. They are marathon runners and did Boston yesterday. They share some of their experience with Don.

I smiled to myself and thought ‘How nice… another ‘If you believe then you can’ story. I didn’t really take the interview in - I just let it drift over me … until I heard the words ‘Organ Donor’. Diane is an organ donor. Part of her message was that one can give significant gifts of oneself and still go on to have a full and fulfilling life.

I was hooked and bolted out of bed. I found Diane’s email address on the internet. She is a minister at a United Church in Bedford. This is too much of a coincidence. Tonight, I emailed her to see if she would come and visit you and share her story and personal insights with you. Insights that come from a fellow runner have a lot more credibility.

Maybe I’m crazy but I sense that she has a message for you.

After work I picked up the children and got them to the pool for their swimming lesson. As I settle at the poolside, I exchange waves with Quinn as he goes about his class. Tara, on the other hand, grabs my attention a different way. “These goggles don’t fit – they leak all the time!” I think she expected me to wave my magic wand and make them work instantly. When I explained that she would have to put up with them as they are for now, she turns sharply on her heel and stomped away.

“That’s my oldest … my daughter the ‘Sun’. Thinks everything revolves around her.” I explain to the parent sitting beside me. It turns out that the lady beside me is actually a grandparent … we look the same age. She was there with her granddaughter who is a loving cuddly child like Quinn. “This is my second family.” She explains. We compare notes on raising children and how different they can be.

Cindy is a breast cancer survivor … no…a thrivor. She tells me of her struggles and her resolve to keep going. I think her grandchildren are a strong motivation for her. They counted on her and she needed to be needed. She has a strong sense of purpose.

It’s been four years now and no cancer. She is a little nervous of the future but she is living, for now, in the now.

Next week you probably will meet her because you will be needed to exchange waves with Quinn and listen to Tara rant about something. That’s what parents do and you can do that too.

I want you to meet her. She has a message for you too. There are so many heros in your life … many of them, you haven’t met yet.

You called today. You sound great on the phone. Strong and confident. You had a good day. I still want to come home and I haven’t smoked.” You said. Tara is very keen to tell all about her piano piece at the music festival. It went well and she was pleased and when we got home there was an email inviting her to participate in the summer musical ‘Suessical’. She is beaming with pride and I can hear you beam on the other end of the phone.

Quinn gets on the phone. As he talks to you he flips upside down and stands on his head … on the stairs! I’m glad you can’t see this … you would freak and scream something like “Stop that. That’s how someone gets hurt!” Instead, you happily play with Quinn on the phone. “Three more sleeps!” Quinn sings to me as he hands me back the phone.

That’s right it’s only three more sleeps and as I write this I realize it’s Annie’s second birthday today… Oops, I forgot it.

Monday April 19 - The Boston Marathon Day

2010-04-21T23:20:00.000-03:00

Today is the day you have been waiting for. I have mixed feeling about the marathon. I worry that it will drive you into a deeper depression. A reminder of what was and will never be again.

You don’t see it that way, You are very excited about the possibility of running again in the mobility impaired class.

Tara is the first one up and dressed. She is wearing her Boston Marathon T-shirt. You dig out your BM shirt and then Quinn finds his. Finally Tara uncovers mine in my closet and hands me it to wear. We are the Official Cashen Boston marathon team.

The home based OT came to meet with you this morning. She wants to trouble shoot before you are discharged from the hospital and make sure that the house is safe for you. I think that you will get along with her very well. She is very keen to make your recovery as complete as possible.

The home based PT will help us develop an exercise program for you so that you are able to have a physical outlet as well as improve your current skills.

The race started at ten. Two running friends, Laura and Sandy, come over to watch the race. Later John, Jennifer and Norris share the experience with you.

You loved the attention … and the 4X4 coffee … and four Boston donuts (your new addiction). You were having so much fun, we lost track of time and left too late to make it to the psychologist appointment. Oh well, you weren’t that keen on seeing him anyway.

We had a great talk in the car. You explained to me that if you started training next week, you might be able to qualify for the Boston Marathon as a mobility impaired runner by next spring.

I wanted to believe this but I thought the time line is a little off. “Take it slow and steady.” I said. “First you could try to walk to the school and then to the school and back then around the neighborhood then 5 km and 10 km walks. Then a slow hop-skip jog. After that anything is possible –you have to be patient and determined.

You got weepy at the thought of the reality that I painted for you.

We talked about SMART goal setting. Goals should be: S = Specific, M = Measureable, A = Attainable, R = Realistic and T = Timely. Making some smart goals now will help you see success sooner and the reward of success feeds more determination.

You are fixated on returning to Boston to race. “I’d give anything to close the finish line in Boston … I’d even die.” How could you think this? The stroke still has a strong hold on your rational brain.

I was blunt with my reply. “How could you sacrifice your family to cross an imaginary line in Boston.” I lecture. ”We need you. Tara really needs her Dad more then ever to help her through her puberty years. Quinn needs you to love and to mentor him in his developing sense of humour and athletics. I need you to love me and keep me sane with your amazing gift of humour.”

You came to the conclusion that there was a twisted irony to your position. Your addiction of gambling lead you to smoking, and running enabled you to smoke, so in a way smoking lead to running. Now, your stroke, which was caused by the unknown, has taken running away from you. “Now smoking won’t let go of me.” You said. “What is really bad it that I didn’t cuddle with you at all this weekend, How stupid am I. That’s because I was so busy thinking of ways to get mad at you so I would have a reason to go out and smoke.”

Just before my call to you at bedtime, you played the – ‘I want to smoke’ game with Janice over the phone. Logic and reason have no place in your decision to cave to your whims. Janice called me to let me know that you were on the verge of smoking.

I call you immediately. I skirt around the topic of smoking and talk about the children instead. “Yes … I’ve been thinking about Tara.” You said. “I think when I get home, I should just hang out with her and get to know her again … be a friend and let her share with me.” I smile at the thought of being a friend to Tara.

You are a great friend to your friends, I think Tara would love this attention. It’s probably just what she needs now. I know that Tara and I will have our conflicts to deal with. Having you in the middle, refereeing, will be a very good buffer.

I ask you how the day has been. “It’s been a good day ... Still no smoking.” As we say good night, you add, “When I get home, I want to be the man you and the kids need me to be.” Wow! I think my blast of rational thinking about putting the family’s needs first, has helped you see the big picture ... both sides of the picture … right and left.

Sunday April 18 - Heros

2010-04-21T09:11:00.001-03:00

You are in a sour mood still. You want to smoke and you don’t want to take your pills. You don’t want to go to church. You just want to die.

I understand that this mood is a result for your lack of ability to make choices, even simple choices. My instinct is to keep pushing the logic behind getting up and taking your medication. I go against my instincts and back off. I should know this by now. Logic has no place in an injured brain … especially a brain with a right-sided injury. I need to communicate with feelings because that is what you think with.

Last night, Tara made me acutely aware that your health and attitude are constant concerns for her. I try to get you to look at your health from the children’s prospective. Although you said that you felt like I was parenting you, it still worked. The next thing I know, you are letting me tame your beard into a manageable shape and pick out clothes for church.

As we load into the car, I almost forgot to pack the wheelchair. “Forget it” you said. “I’ll want to walk into the church.” I suggest parking close to the door to let you out and the park the car elsewhere. “Nope, park here on the street and I’ll walk.” You did it. You walked down the street at a slow but steady pace and into the church.

Your stubborn determination made it happen and made my spirits soar.

As we look for a spot to sit, you start talking to a congregation member. While you stand there talking, applause starts from the choir section and spreads quickly to the whole room ... you are too busy talking to acknowledge the applause. You are an inspiration to the congregation. A loved inspiration.

Tara and Quinn notice – their spirits soar too.

Transformation is the topic of today’s sermon. This, of course, can be viewed in many ways but it seems very fitting to you. A metaphor of swinging from trapeze bar to trapeze bar was made to explain how transformation is both scary but exhilarating. If you don’t take a risk, transformation will not happen.

You have a big transformation to make. Many trapeze bars and many risks but the results will be worth it.

After church you talk with many of the congregation. You tell them that they are your heros. Rod Carew may have been one of your first un-related heros, but he is not your only hero. We all need heros …Today, you were surrounded by them.

Most of your heros don’t realize it, but they have super human strength and they unselfishly share their strength with you. Going to the church today was an antidote to your desire for self-destruction. Being around people you love and who love you makes a big difference.

When we get home, Tara is overwhelmed with sadness. She is angry and tired (not much sleep last night) and hungry. You kick into Dad mode while I get some food ready. By the time I have lunch on the table, you, Daddy the super hero, shared your strength with her. She was better.

You feel that you were ‘reborn’ to experience new life lessons and learn how to be a more ‘productive’ person. You are starting to explore ideas of things you can do once you get home. Everyone needs a passion to fulfill. Woodworking was one of your outlets, before the stroke. You think that with a vise, you could still carve with you right hand.(With a vice you may crave instead)

You can’t see how you would be able to use the shop we built a year and a half ago. Right now it sits with tons of equipment haphazardly piled in the building. It was going to be a great shop with a little organization. We had tossed about ideas. Ideas like, letting my brother, Bill, use it if he moves home. Today, You thought that you could loan it out to people who need access to the large variety of equipment that you have. “Why not make it a community workshop for the causal wood worker?”

This afternoon, Tara had her first audition. It’s for a summer theatre musical. She is very excited about being involved in the production ‘Suessical’. She practiced her song several times for us. Each time, fine tuning her performance of ‘Take me out to the Ball Game’. She sounded good and confident. As she waited for her name to be called, she didn’t want us to be there to support her. “Let her show her independence.” Helen, the lady at the sign in desk said. Oh Boy that’s hard. She is our baby, I’m not ready for her independence yet.

Thank God, independence happens in stages. After being a brain washed parent for ten years, I’m not ready yet to give up the notion that my children will grow up and not need us so much.

There has been a lot of discussion about a tattoo this weekend. You want a tattoo. A tattoo on your left arm. You have tossed about various ideas but the one that has stuck is a unicorn. You want a unicorn with your time at the Boston Marathon last year, 3:22:45. “Why a unicorn?” I ask. “That’s the logo of the Boston Marathon.” is your simple reply.

I was a little disappointed, I was expecting something with a little deeper meaning. Something like, ‘because a unicorn is magical and only exists if you believe.’ That works for me because so much of your recovery hinges on the principle of belief. If you believe that good things will happen … then they will.

Next week, I promise we can look at getting a tattoo.

Saturday April 17 – I’m 49 going on 78

2010-04-21T09:10:00.001-03:00

It was a tough day … all day. You had a long list of things that you wanted to do and I needed to get groceries. This conflict ended with a discussion about priorities and you sulked. You didn’t want to do anything except smoke.

Finally, we got everyone out the door. You visited Donald while the children and I got groceries. I had hope that a visit with him would catapult you back to the world of hope. A visit would give you another purpose … It didn’t. Donald wasn’t having a good day either. When we came to pick you up, you did manage to make me cry when you said good bye to Donald.

Today, Donald was in a little world in his own head. Although you talked, Donald’s deafness and his own turned in state made communication difficult. Donald’s 90 years have started to take their toll. When you were ready to leave, you reached out and massaged his elbow. You said, “I love you.” Just like a son would to his father. Donald made a noise. I think he did hear you. I don’t know what he said but I’ll guess it was I love you too ... just like a father would to his son.

This morning Quinn and I were cuddling and Quinn started the ‘I’m Lucky’ game. I wonder if one of the more spiritual reason that adults are suppose to have children so that they can be reminded about the great and simple games that you can play with them.

The ‘I’m Lucky’ game is different from the ‘I love you’ game. In the game, you try to think of as many reasons as possible why you are lucky. This game started because we successfully arranged two playdates, one with one of Quinn’s friends from school. Connery and the other is a playdate with Erin, Tara’s friend. “Tara is lucky that Erin is coming over!” He said. I point out “You got Connery to come over … that’s pretty lucky.” Not to be outdone, he says “I’m lucky to have a Mum.” I squeeze him. “I have a Quinn.” Rising to the occasion, Quinn counters with “I’m lucky to have a Dad and a sister.”

We forget how very lucky we are.

Quinn is a hugger. He is the best kind of hugger … a random hugger. His hugs are good and strong and he even does the back pat for added effect. His timing is always good. I think he gets that from you. It links into the timing you use to deliver an especially funny line. Hugs and humour must well timed to have the best impact. Today, Quinn merged to two talents.

Just when you and I were at a rough spot this morning about what we were going to do, Quinn skips into the room and reaches out to give me a hug. I think, as I connect with his arms …’What a great kid’. What I didn’t know was that he had the little buzzer wound up and concealed in his hand. As we embrace I get the shock of the buzzer going off on my back … I jump up and scream. He giggles and the tense moment between you and I lightens for a bit.

You still wanted to smoke. You had your backpack with the cigarettes in hand. The screen door was open and you could have gotten out. That’s when Quinn hugged you. The feeling past. Timing and the touch of a son are powerful things.

For a brief time you had a period of being good. Hollis came to visit you and the two of you talk while I skipped out to the animal hospital to get some papers. Hollis’ visit was very therapeutic. After Hollis left, you felt good. We talked like the old times.

You seemed safely on firm ground and ready not to falter. I remind you what I had seen earlier in the day with Quinn’s hug. You had a chance to get outside to smoke, but you didn’t. It’s almost like that you have two voices, one on each shoulder. Now the good guy is winning but the bad guy keeps trying to get you. “You have to stay strong.” I said.

Lately, you have talked a lot about redefining yourself. You explain to me that simnce you are born again and you will need to make fundamental choices about who you want to be. You feel that the legacy of the stroke has limited many of your choices. When you feel sad you are over whelmed by the sense of loss and when you feel good you are ready to take on new roles that are inspiring to many.

This is the good voice and the bad voice in your head. There is nothing wrong with your ability to process thoughts and re-organize them into an understandable concept.

Fran came to visit again from Newfoundland. She came to check on Mum and her progress from surgery. We have been very frustrated at not being able to call her because the phone system in her room is messed up. Thankfully, Juanita got to the Halifax Infirmary yesterday and discovered the problem but it’s still not fixed yet.

Fran got to our home late. The two of you had a little talk and we looked at pictures of you while you were in the Halifax Infirmary. You could hardly recognize yourself. I expect it’s a little shocking seeing yourself looking so broken.

Fran and I fall into a sister conversation and you interrupt with a request for a Tim Hortons run. “It’s 10pm, I don’t want to go to Tim’s now … it’s late and I’m tired.” I sighed. Fran declined to go for you too.

Tim’s Coffee and Boston cream doughnuts are becoming your new addiction. Within minutes of rejecting your suggestion, you get quiet. As suddenly as the good mood came … it went.

A dark cloud came over you again. You circle back quickly to your depressed state. You want to get to bed. You refused your medicines. You want to suffer without them. I plead with you but you won’t take them. Regrettably, I got frustrated and angry. This was the first time I got angry at you since before your stroke. Yet it wasn’t enough to vent to you about you. Minutes later, I turned on Tara. She didn’t want to sleep in the bunk bed. A minor thing but it seemed big at the time. Tara and I exchanged words and she tried to cry herself to sleep.

I couldn’t bear to hear her sobbing and went to her bed. We made a compromise. She needed to talk. She was worried about you not taking your medicine as well. We talked, we share and we cuddle for a while. In very little time, she fell asleep.

My vet class reunion coming up this summer. There were about 120 of us and many of them I haven’t seen for a long time. I emailed one of my classmates about your stroke and the word has spread and I have received messages of strength from voices that I haven’t heard in 25 years. I can’t imagine getting to the reunion this summer. However perhaps connecting with people from my youth when I thought anything was possible, would be a good thing.

Many of the messages mention the fact that we are all older. Getting old is a two-edge sword - it cuts both ways. We trade thinking anything is possible for wisdom. I used to think anything was possible. I used to think it until very recently. Suddenly now, I feel old and tired.

Today, I think I aged far more then a day ... maybe as much as 29 days. Great, at this rate, a year from now, I will be 78 years old … that’s if I actually live that long.

Friday April 16 – Reinvent Being

2010-04-20T23:08:00.000-03:00

As I drive to Halifax, I think. Every drive that I have done to or from Halifax without you or the children in the car… I think. I used to listen to the radio. I was a hard core CBC fan. I loved talk radio. Since your stroke, the white noise of the car allows me to keep my mind working on the things it needs to work on.

Today, I think about people and when a person becomes a patient. Not just a patient in the casual sense, but a consumer of intense medical therapy, like you. When a patient is always on the receiving end of care and is unable to give, it takes part of you away. You receive but you don’t give. Normal relationships do not exist in a hospital setting. This is something that you will have at home. Healthy two way relationships with people not only give to you but also receive from you. This is healthy and necessary to living.

Caring relationships go both ways. That is what gives us a purpose in life. Caring for others. It’s biologically programmed into us because we are mammals and we are a social species. To remove half the caring out of a relationship makes it an aberrant relationship … unhealthy and unrewarding. This is what you have experienced with a few exceptions in your hospital stay.

Objectively, I have tried to measure the time that you are depressed. My best guestimate is 40% depressed and 60% normal, although there is a lot of variation. I wonder what your measure will be like when you become surrounded with people who you can care for.

You said you need to redefine your roles and restore relationships with the people in your life. Reinventing yourself will help you climb of your dark hole. In time you and your community of family and friends will help you reinvent yourself. Perhaps that’s the difference between survive and thrive after a stroke or any life altering event. Survivors just get through the course. Thrivors reinvent themselves to get through their ordeal and in the process they not only inspire their own recovery, but they also inspire the people about them.

If this is the case, maybe I should call this part of your story: How My Town Healed My Family

Few years ago, I remember reading about a young woman who had a stroke. She was a young mother. She struggled with her recovery while being a mother to her pre-stroke children and her post-stroke children. She thrived because she had a strong sense of what her role was. She was needed. She knew that she needed to care for the most important lives in the world … her children. I thought, at the time, that it was interesting that a simple and strong biologic instinct of motherhood trumps the damage that a stroke can inflict. Motherhood gave her a reason to make a recovery.

Does the same work for fatherhood … I think so.

We had talked the other day about the reinvention and whether it is a ‘do over’. I expect it is in a small way but it’s actually better then that. It’s a do over with the benefit of hindsight. Life experiences are part of the fabric of your being – who are now isn’t who you were yesterday or on August 30. The advantage of re-invention is that you get to cherry pick the best roles and gifts.

You can get all cherries and no pits – what a great deal. It’s almost enviable to have this gift. Most people would love to have a do-over and yet still have the wisdom of their past experiences. Many would want it but they are not willing to part with the comfort of what they know so they choose to continue without emotional and spiritual growth. With you this was not a conscious decision, it was made for you, and your world was torn away from you. Now you get to decide what you are going to take back and what you are going to leave.

In a small way, this apples to me too. I have had some layers torn away from me. Now I get to decide how I am going to be after this stroke. Before the stroke – I had a lost sense of being – I knew my roles; mother, wife, daughter, sister and friend. But I had lost sight of what life is about. I thought that life was about doing. It’s not. I have learned rather slowly that life is about being. I had forgot how to be. How to be human. A human being … and part of a larger biologic being … the human race.

When I get to the hospital, you and your psychologist are deep in discussion. At the end she highlights some of the more general advise. “Exercise and good nutrition are very important, they help clear your head of toxins that impair your thinking.” She said and then adds, “Cigarettes are not going to help you.”

On the car ride home, you start the ‘I want to smoke’ rant – I shut you down. The car ride home was quiet … you sulked. It was a very long ride home.

In the past few months, I have noticed that the e physical barriers you have identified that have stopped you from smoking have been very convenient. At the same time, I hope that you don’t see all physical barriers as insurmountable. That would certainly derail your recovery.

Tonight, Terry and Chris G came over. You shared some guy time with Chris and Quinn. The three of you tried to watch baseball. The Angels vs the Bluejays. You had a lot of difficulty following the game. It’s strange. You know the rules. You know the strategies. You just can’t enjoy the game like you used to. Maybe it’s a concentration problem. Maybe there is more to it.

You will have a lot of physical barriers to over come. The trick is finding the right motivation to overcome them. If necessity is the mother of invention then frustration must be the mother of motivation.

I pray that the desire to smoke will not be as strong as the desire to relearn baseball or effect a good recovery.

Thursday April 15 – Timing is Everything

2010-04-19T22:06:00.000-03:00

After music practice with Chella, Tara asks me why I look tired. I was called twice in the night with animal emergencies. I am tired today. I look tired and I feel tired. I told her that I needed some sleep to allow me to continue this pace.

She noted a similarity with what she and Chella were just talking about. Breathe control. “I see, timing is everything.” She said knowingly, “Sleep must be well timed, just like a breath when you sing. Good well-timed breaths make song beautiful. Well-timed sleep makes your day go better.”

How do kids figure this stuff out? It took me years to know that and I could never have said it so poetically.
Tonight you expressed a need to reinvent yourself. You feel that you are born again in many ways. As a result, you want to give away some of your ‘old left over you’. Since you didn’t get to give away your organs, you want to give away materialistic things. Things that you felt defined you before your stroke. The cross, the golden 29 and the Notre Dame ring were all part of you but now you want to share with people who you have grown to love and respect.

You found a good home for the cross and the golden 29 that lived on your chain during your recovery. Now you want to give your ring away. You had designed and had this ring made. It has engraved on the inside your favorite line from the ‘If’ poem. ‘If you can fill the unforgiving minute with sixty seconds' worth of distance run…’ This ring has a lot of meaning to you and you want it to go to a special person … your OT (the new-old one).

You are doubtful that she will accept it. She operates on a very professional level and doesn’t want to confuse your thinking process by letting you get close. I understand this and so do you rationally with your left brain but your damaged right brain wants to give her something of the ‘old you’.

You wanted to know what I thought. I said that you should do what you think is right but I wanted you to understand that she may not accept it. You accepted my advise and you ‘wisely’ decided to keep the our wedding ring which you now put on your right ring finger and the St Christopher medal that I gave you many years ago. I guess your right brain isn’t that badly damaged.

I ask about the battle of smoking. No smoke yet – but the urge is there. “Maybe this weekend.” You say … I’m onto you now. I think you say that so I will pay attention to you. That’s OK – bring it on, I’m ready. As Tara said “timing is everything.”

Wednesday April 14 – Sharing your Losses

2010-04-17T23:19:00.000-03:00

You called me twice today. These are the first long distance phone calls you made. You are starting to get some of your resourcefulness back. You had another good day. You said that you scouted out a smoking place outside but you got stuck and had to get someone to get back to the hospital so you didn’t try to smoke.

Another day. Another finishline.

You told me of a gentleman you met on the floor who has no legs and no memory. He can talk and he has his arms. He doesn’t know who he is. Amnesia is something you hear about in soap operas but rarely in real life. I try to imagine no memories. How difficult it would be for the person and for the family.

I remember, there was a time, I worried that you would have no memories or significant gaps in memory. You don’t. Your long-term memory is as good as the day before your stroke … better then average. Your short-term memory is a little reduced but now you are simply a member of the population’s norm.

To loose one’s memory would be like loosing yourself.

The two of you had a good talk about the bad feelings that constantly circle you. I think that talking about your losses with someone who has experience significant but different losses from you allows you to appreciate a little what you do still have … which is plenty

Tuesday April 13 - Actions Speak Louder Then Words

2010-04-17T23:18:00.000-03:00

You had a good day today you said. “Did you smoke?” I ask. “Is that all you care about?” You enquire. “No” I said. “But it’s a measure of your day that is important to me.” You came close but you didn’t. You had your coat and lighter and cigarettes and even breath fresheners ready to go but you didn’t smoke.

Actions speak louder then words. Another day under your belt. Day 91 since your confession about smoking and day 226 since you were forced to stop smoking.

I talked to Harold about the Stroke Club. The fund raising went well last weekend. The members were pleased to see you at the ‘Walk and Roll’. When I told you this, you said if they were impressed then they will get see more because you are not finished.

You want to make a difference in your life and in the lives of others. This is part of your ‘Pay it Forward’.

All evening Quinn and Tara have been working on their rooms, tiding them up so that you can walk in them and get to their beds easily. Quinn even rearranged the furniture so that you can get to his bed easier. He wants you to be able to lay in bed and read with him.

Monday April 12 – Entitled to Anger

2010-04-16T07:17:00.000-03:00

It’s back to the rehab again. This is the second to last trip to Halifax.

You are excited about next week. It’s the Boston Marathon next Monday. You’ve already invited friends to share the experience with on April 19th. You want to track runners in the race virtually via the internet. You want see who you know that’s running in the race from Nova Scotia so that you can follow them though the race course. I expect this will be like reliving the 2009 Boston Marathon.

The Boston Marathon talk gives way to a Cabot Trail Relay (CTR) discussion. You are going for the weekend. We are all going. You want to follow your team-mates through the whole course. This would amount to a full 24 hours of being awake. I think I might have to be the voice of reason and try to get you to be a little less involved.

You are not ready to hear my voice of reason. You love the CTR and nothing is going to stop you from living the experience as fully as possible. I hope to be with you for part of the race, but the children want to visit their friends and Annie wants to see her doggy family, so most of the weekend you will be in the team’s care. I know you will be in good hands. I suspect Martha, a nurse and your best friend, will be my voice of reason by proxy. She has a lot more diplomacy then I do. You might listen to her.

You have a special surprise for the runners of your team that you are working on which has to remain a secret until then. Chris G suggested that you finish 17th leg of the CTR. He thinks that the team could get special permission to wheel you or have you walk the last little bit of the race. “Oh no, I couldn’t do that. That’s the glory leg … the last leg. It belongs to Edwin. He has earned it. He could do the top ten, for sure … maybe even the top five!”

As always, you are thinking about the joy of running not about yourself.

Then the conversation circles back to smoking again. I don’t know how many approaches I can take to dissuade you from smoking. As we talk, it occurs to me that you are literally, on the edge. You are constantly looking for something to be an excuse to smoke. “You didn’t call me this morning, the nurses are not nice, I got scolded again.” Yet you are also looking for a reason not to smoke. Up to this point, the reasons not to smoke have been about logistics. “I don’t have cigarettes, it’s too hard to get outside, I have to wait for someone to take me out, there is no lighter, these cigarettes are stale.”

I don’t have to give you barriers, you make your own barriers. I think there is a battle going on in your mind … to smoke or not to smoke. That is the question. At times you think that you could pull off a ‘mulligan’ with smoking. I am doubtful. I think you are too because you have also acknowledged that one cigarette leads to two, and two to three etc. To counter this you need a logistic barrier that is ‘out of your control’. It is like you are playing mind games with yourself … and me.

You think of the no-smoking challenge like a race. The problem with this metaphor is that the race never ends. Every day is a new challenge with a new finish line. You wish that, one day, you could just not need to think about not smoking.

It’s difficult for me to fully understand a smoking addiction. Three months ago, I didn’t even know that you smoked. I never heard you talk about smoking and I never saw you smoke. Hearing you obsess on the subject seems very odd.

We talk about how, in time, you will learn new ways to cope with the feelings that lead you the desire to smoke. The problem is that it is difficult to learn new things when you have a hurt brain especially when you are also struggling with other things. This was not a good time to stop smoking … you have a lot of stressors on your plate right now and smoking is a coping tool.

I remind you … although you have 225 days in now, you have only been a confessed smoker for 90 days. Change takes time.

Your favorite poem, ‘If’, has always brought you to tears. When I ask why, you said it was because of the line: ‘If you can fill the unforgiving minute with sixty seconds' worth of distance run. Yours is the Earth and everything that's in it, And - which is more - you'll be a Man my son!’

To you, the unforgiving minute represents your lost potential. You take the quote literally, Running is your way to compensate for the unforgiving minutes that you have lost. Without running, you feel less entitled, less of a man and less deserving of life on Earth.

“I don’t believe in God … I am angry at God. I have every right to question him. If he is real then he should have killed me back then.”

Without any prompting from me, you started to talk about how you think your role of father is going to grow. You see it the same way my psychologist sees it. Your father role will kick in slowly. It will not be something that you slip into right away. I’m pleased that you acknowledged this, because I see this already being the case.

It frustrates you when the children come to me with their problems and not you but you are gradually getting that back. It’s a practice thing. Most parents ease into the parenthood thing with newborns … stepping into the lives of a 10 and 8 (almost) year old is very difficult without causing some collateral damage.

Today, our family psychologist did more exploration about smoking and asked you about your feelings when you want to smoke. This has been a real sensitive spot between us. I try to be supportive and yet not enabling. That is a difficult compromise to achieve. I think that you don’t believe I have achieved it because, more then once, you said “I make you want to smoke”.

The psychologist thinks it would be wise for Tara to see a psychologist to help her understand the feelings that she has. Over the past few months, I have learned that understanding fosters acceptance of the feelings and this allows you to learn more about yourself.

I reflect on the last months, and sense a theme of anger. I’ve drifted in and out of anger for some time. Most of my anger is directed outwards to the hospital, and the people who try to help you and the system that supports them. Tara is entitled to her anger. You are entitled to yours … your anger with God.

It has been a yo-yo day and I have to leave for Truro when you are going on a down swing. Just as I was wondering how I was going to leave you in the emotional state that you were in … the chaplain (ironically) comes to visit you just as I leave. It really couldn’t be any more obvious, God isn’t punishing you, God is there to help at every turn … you just can’t see it right now.

On the drive home, I wonder why I am so tired. It’s the transitions. Transitions from nurturing mode to logistic mode. I have never been a person who can ‘change horses’ quickly. I have inertia and a momentum problem. The transition time is spent in the car. I try to decompress in the car so that I’m ready for my next shift in Truro.

The closer I get to Truro, the more tired I got. “I only have to do this for another two weeks.” I think aloud, trying to keep my eyes open. I finally limp into the driveway. I turn off the engine and tip the seat back and sleep … in the sunny car … in the driveway... for a full 45 minutes.

The sleep proved to restore me partially but not completely. To finish the job, I took Annie out for a walk. Then I was ready for the rest of the week ... Logistic mode.

Sunday April 11 - Celebrate Every Day

2010-04-15T23:18:00.001-03:00

No church, no Donald visit and no hot tub this weekend. You are disappointed but it’s too hard to juggle these things with being on call. I can’t leave you at the church or Donald’s or in the tub for an indefinite period of time - unsupervised. You aren’t pleased with this.

It will get better, I assure you. Once we get homecare sorted out and a routine to life, things will get better.

The animal emergencies start early today. Luckily, John came to visit just as I received the call to go into the hospital. You and John have a good long visit. When I left, you were singing my praises. When I got back, about three hours later, you were still praising my efforts. I find it hard to believe that you talked about me the whole time … I wonder what you were really talking about …

I don’t really worry about it. I know that John is a good influence on you and that the two of you really connected. That’s what is important. You have been craving friendship at the NSRC and have been getting cold professional shoulders in return. (Except for your PT – she’s wonderful). You need real friendship that supports you but also makes you accountable to the most important person you know … yourself.

PT and OT may help your body become mobile and safe, but friends will heal your ego and help you build your sense of self. You are lucky that you have good friends.

After lunch, you want to smoke. You want to go outside on the deck to smoke. Against my better judgement, I help you outside, while praying under my breath that you will find the self-control not to light up.

You feel that smoking again is inevitable. “I might as well get it out of the way.” You say. “I’ll just smoke one or two …get it out of the way.” You didn’t smoke … you forgot the matches inside! We talked instead. After you said that the feeling passed and you put the cigs away.

Maybe the cigarettes that you bought are not only a means to test yourself every day but they are they are also a way for proving to me that you are worthy of my trust.

You are the only person who can decide to stop smoking. Harold is right. It’s a daily decision.

I wonder if you use the topic of smoking, as a way to get attention, so you don’t smoke. If that’s what works, then that’s great. We will give you as much attention as we can to get you free of the habit. Perhaps one of the first self describing roles that you will use to redefine yourself (besides husband, father, son, brother and friend) will be ex-smoker

You talk to the children about what our family life might look like when you get home. You tell them that assistants will come to help you to do things but you are still going to be their father. You will still make decisions and expect the children to listen to you. They have to trust that your choices are to keep them safe.

“We may have people here who will be different from day to day.” You say. I point out, “The person who is here to look after Daddy’s needs. They aren’t here to wait on you. Daddy’s job is to look after you. Things like getting you a snack, or helping you with homework or discuss how you are going to ride your bike safely etc. These were daddy jobs before and they will be Daddy jobs again.”

You tell them that you really want to walk them home from school. “This will be our special time to chit chat and talk and share things with each other. I missed out on the last seven months of your lives. Mummy has done everything for you. Slowly, I will become your Daddy again ... your Daddy and your friend.”

The homecare person will be here to help Daddy get about safely. I expect that we will become good friends with your ‘assistants’. They will become members of our family. We are all a little excited about the future.

In the early evening, I got another call to look after an animal. Marianne came over to talk with you and the children. When I get back you look very pleased with yourself. The four of you had just had great fun playing cards. I come into a room of giggles and smiles. You decided who will get the golden 29. You gave it away to Marianne.

George came to visit – on his way out, he reminded me of the improvement that you have made since Christmas. That’s what I need to keep reminding myself of over and over again -… how much you have improved since Christmas … the changes are slow but they are real and significant and they need to be celebrated every day.

Saturday April 10 – You Obviously Don’t Know Me Very Well

2010-04-15T15:10:00.000-03:00

Today is the ‘Walk and Roll’, the March of Dimes and Stroke Club fund raiser. You are up early and want to get there on time. Just like the before-stroke days, you were always up early to prepare for race day. This morning, you keep snapping the whip to get the family moving to get out the door. You don’t want to be late.

We meet many other stroke survivors and thrivers there. Harold is there and he introduces you to other club members. Most of the members have heard about you through the grapevine. Each person has their own special story of overcoming their new circumstances. We shared stories with a few of the members. They are an inspiring bunch of people. Strokes, and I suspect any major disease that requires a lot of fortitude to overcome, produce special people. Inspiring people.

At the registration desk, you ask “Do we get a bib numbers like in races?” You are taking this Walk and Roll challenge seriously.

The walk started close to one end of the mall and went to the other end. You were determined to walk the entire distance. I was worried that you would overdo it. We moved along slowly with Quinn following behind with the wheelchair incase you needed it.

The pace was slow but steady. At one point one of the organizers suggested that you wheel it to the area of the food court and you could walk a little more there. You looked her in the eye and said, “You obviously don’t know me very well. I am walking this thing.”

Determination has always been your strong suit. You have never quit a marathon. I suspect there are some times when you thought about quitting but you didn’t – you kept going. Even though you knew that there would be no personal best at the end of the day, you weren’t about to get a personal worst either. You always kept going.

In the afternoon, the homecare coordinator came by to show us the service plan and explained a little more about the details of self managed homecare. There is a document that we have to write to apply for self-managed care. She filled in a few medical details and wants you to flesh out the document to explain your vision for the future and your goals from homecare.

In the document, the test score for your mini mental state evaluation is mentioned. It is a 30 point test that evaluates the cognitive status of a person. You scored 29 out of 30. The only thing you missed was the drawing exercise. That is because of your left neglect. To you, the score of 29 represents a perfect score. You are pleased.

Once you get the OK for the self managed care program, we must hire 1 to 2 people to work with you. Finding the right people will be half the battle. We need someone who is able to give you the motivation and emotional support that you need and yet be able to help restore some normalcy back into our family life.

A young friend came to visit you today. Hannah is a runner like her Mother. Karen is running in the Cabot Trail Relay for your team. Hannah is too young to do this yet, but you sense that one day she will love to run as you do. Hannah and her family have been very kind to our family since your marathon begun. You wanted to show her that you appreciated it and that you see a runner when you look at her.

You gave her the last copy of a poster that you got in Boston last year. A poster that has all the runners names on it with the phrase, ‘Greatness goes by many, many names’. You think that someday, Hannah will have her name on a poster.

Generally, you don’t see yourself easily falling back into the Dad role easily. I think you are … you just don’t see it most of the time. In the afternoon, Quinn called from a friend’s place. He had his bike and asked if he should come home now. Without a moment’s hesitation, you told him yes and proceeded to reviewed the rules of the road with him and added at the end. “Drive safely”. After you hung up, you smiled and proudly said to me, “Yah, I made a decision, I told him to come home … all by myself!” Your Dad role is coming along.

Time measurement is still a frustration for you. Tonight, you swore that you called out to me from your mancave while I was upstairs trying to get dinner underway. I couldn’t hear you. “How many times did you call?” I asked. “For at least half an hour!” you replied. You were convinced that I was ignoring you. When I didn’t respond, you decided to take things into your own hands and come up stairs by yourself. You ended up falling up the stairs. Actually, Quinn found you trying to crawl up the stairs.

Communication is a problem between your room and the rest of the house. We will have to think of some way to enable better communication between levels of the house.
In doors and out doors … maybe those walkie talkies that you got many years ago – I’ll bet they are in your mancave hidden in a drawer somewhere.

The same part of you that made you walk the length of the mall this morning also made you try to crawl up the stairs tonight. Your frustration mixed with your headstrong attitude is as much as an asset as it is a liability. I can see that your future recovery team will have to posses the special skill of allowing you to use your determination for good things not risky things.

The evening ended with you not wanting to eat dinner and wanting to smoke. You said that I make you want to smoke. As always, magical timing made the phone ring. It’s a call that I have to go into the hospital for. A dog hit by a car. I called Harold. “I’ll be right over. Harold came to visit you while I tended to the dog. He helped you past the urge to smoke.

Magical timing – the right person in the right place at the right time.

NOTE TO READERS: Chris and I are looking for the right person or people to hire for the self managed care program. If you know of someone who, you think, would like to work with Chris in his recovery, please let them know that we are looking for the right people to help him (Chris says he doesn’t want the ‘wrong people’). Some personal care experience would be helpful. We need someone who is optimistic and organized, flexible (with a schedule …that is), fairly strong, animal and children friendly, reliable, has a driver’s license and can drive a standard and most importantly, appreciates a great sense of humour.

Friday April 9 – The Meaning of Loss

2010-04-15T14:50:00.000-03:00

This morning I experienced a loss and a gain. I lost hot water but I gained the knowledge of how to identify a blown fuse. I know these are small things but it got me thinking about loss.

The last few weeks we have had hot water problems. This morning, I had a cold shower. Yuk. That is when I realized that I took hot water for granted. Cold showers suck.

Previously, I had figured out that the fuse blows. If I replace it I solve the problem until the fuse blows again. This was happening more and more often. Now I have a pile of fuses that I can’t tell if they are good or not. So today I called the repair guy.

He got here within 23 minutes of my phone call! How’s that for service. The box was shorting out and that blew the fuses. Within 30 minutes he had the box fixed and taught me how to tell the difference between good and bad fuses. We had hot water again.

I look at your losses and realize how much I take my body for granted. I have sensory input and abilities that don’t even register on the radar of everyday living. While your losses are profound, they could be worse.

More importantly, when you view your losses from a different way, there are gains. The book I’m reading now, ‘Five People You Meet in Heaven’ highlights this concept. Losses and gains can be the same thing when viewed differently. Perhaps in some obscure way this reveals a small bit of the meaning of life.

On the way home, we visit Mum at the Halifax infirmary. As I busy myself with getting her water and other comforts, the two of you talk. I had to excuse myself to go to the washroom. I could over hear the two of you comparing your hospital experiences and swapping advised of how to make it more tolerable. At one point, I overhear your voice penetrate the bathroom door. “Well, we’re not going to try the vigara anymore, I was getting headaches and my blood pressure went up. The duct tape and tongue depressors didn’t work very well either so I don’t know what we’ll do.” You say with a sigh. I couldn’t hear Mum’s response … thankfully.

Great, Mum never knew when you were serious and when you were kidding before your stroke. Your comic delivery of a line is still very strong … I wonder what she thought.

Thursday April 8 – Reconnect with Baseball

2010-04-15T14:49:00.000-03:00

Another day of not smoking again! You thought about it and said that if I hadn’t called that you were going to smoke. I don’t think that is fair. To smoke or not is your choice, and you shouldn’t deflect the choice to my actions.

You asked about the baseball season and the W-L for the Angels. I looked it up for you. You are worried that you won’t be able to follow a game. You have tried to watch a bit of baseball on the TV at the hospital but you feel confused by the game. I don’t know if it’s a concentration thing or something else.

I tell you that Quinn wants to play ball this summer. You have mixed feelings about it. “What use can I be to him. I can throw but I can’t catch.” No binocular vision makes depth perception very difficult. I remind you that there is more to baseball then the physicality of it. There is the strategies and the folklore of the game that you can share with the children.

I can’t think of a better way to reconnect to a passion like baseball then by sharing it with your children.

I will pick you up from the rehab tomorrow. Mum’s surgery went well. You want to visit with her with me on the way home. This will be the first time since Oct 30th that you are back in this hospital. I wonder if it will evoke any memories?

Wednesday April 7 – A Long Day but a Good Day

2010-04-15T14:48:00.000-03:00

It’s a very early day today. My Mum has to be at the hospital in Halifax by six AM for her long waited for back surgery. That means a four AM wake up to get her to the hospital for her surgery. Going through the doors of the QE2 Halifax Infirmary again felt very strange.

After dropping Mum off, I have to drive right back to Truro because I start my workday at nine AM. There is no time to visit you. I am a little apprehensive about Mum’s surgery. It’s a big surgery and we hope that it will improve her quality of life but it will be a long recovery.

It looks like the hospital visits may end for you but they will start for Mum. Later in the day, Juanita calls to say that Mum’s surgery was six hours long and so far… so good.

As I drive back to Truro I think about how the children have been and will be our salvation. I look at them and I see hope and then I have hope. When I think about your life and my life, I feel tired, when I think about them I am renewed. They impart energy to me that no one else can.

This is good thing because today when I realized, at the last minute, that Tara was to sing at the music festival, I was catapulted into action to get her dressed and at the festival in less then 50 minutes while still at work. Thankfully, Carmen from work, scooped her up and got her to the festival in time while I finished up at work so I could get there to see her perform.

It was a long day but a good day.

You had a good day too. There was a point that you wanted to smoke but a nurse from the 5th floor saved you from smoking and she is a smoker – she gently persuaded you not to smoke. I expect that this is an aquired skill that is not taught at nursing school.

Tuesday April 6 - Counting Days and Blessings

2010-04-13T21:37:00.001-03:00

I couldn’t sleep well last night. I tossed about and couldn’t find my right place in the bed. You weren’t there. Quinn was there instead and just as I finally did drift off to sleep, he managed to kick me in the head.

Quinn started the count down to when you are home for good. “Two weeks and two days!” He said gleefully this morning. He seemed to have a great sleep. He is wide-awake and ready to go first thing today.

I don’t know how set the ‘discharge date’ is yet. April 22 is on a Thursday and I’m on call again that weekend and have a vet meeting in Halifax on the Friday. I hope to take you home with me on the Friday for good. Official homecare won’t start until after the weekend. Luckily, that weekend I think I only work the nights. I will be able to manage the on call for the nights if I have someone to be on standby for help if needed in the middle of the night. That leaves the days free to be with you.

I can see that life is going to get more complicated when you get home.

You are sad today. “A headache” you said. You hung up on me for the first phone call. You were angry that I didn’t call you last night before bed. I try to help you understand that I couldn’t drive home from Halifax, pick up the children and get them settled in bed and get things ready for the today and get you called before 10pm. I know that you understand that I am trying, but having you hang up on me made me feel awful.

I called back right away. You talk and I listen and we talk more and you seem better. I swallowed hard and asked, “Did you smoke today?” I wasn’t sure I wanted to know the answer. “I wanted to so I checked out the place outside to see if I could get myself there and back OK … but I didn’t smoke.”

The choice was yours and you choose not to smoke … today. I am proud of you. You had a rough day between the stress of me not calling you last night and a headache as well as all the other reasons you could find to justify to yourself that smoking a cigarette was OK – you still choose not to smoke. That is progress.

Quinn is counting down the days until you come home, you are counting up the days of choosing to not smoke and I am trying to count my blessings.

Monday April 5 – Pep Talks vs the Cigs

2010-04-13T21:36:00.001-03:00

You want cigarettes. It is becoming an ongoing conversation. I can’t distract you from it. You want me to enable you to get cigarettes but I can’t. I could not, morally, get you cigarettes anymore then I could put one in Tara or Quinn’s mouth and light it up.
So I said "No, but you can get someone else to do that for you." That's when you thought of the only friend you have who is a bit of a rebel. You called Chris G. He came to your rescue. He got you the two packs you asked for “A mild flavour cigarette because I couldn’t smoke my usual brand now after seven months and a pack of my usual stronger brand.”

I was a little miffed at Chris G for caving to your whims, but then I thought about it.
I think - in hindsight - that having the cigs in your hands empowers you to make the decision not to smoke. I have forgotten that you never actually intended to quit smoking seven months ago - that decision was forced on you. For success - you have to want to quit. For most people to quit, they choose to quit at a non-stressful time in their life. You are trying to quit at the most stressed time of your life. It is a very different battle.

The most important thing for me, at this time, is … if you smoke, there will be no secrets. You promised me you would tell me and I promised you that I would still love you and continue to give you support for quitting.

Chris G empowered you to take charge of something that you can control - the choice not to smoke. One day at a time you say.

After a good night’s rest things seem better. It’s a beautiful day and we are all tired of being indoors in the hospital setting. On Friday, I set up and filled up the hot tub. The hot tub is an ‘appliance’ that we have enjoyed over the years as a family. We bought with my tax refund the year after I was off for a few months recovering from knee surgery. It was sort of my 40th birthday present. We thought that we are or will be entering the back half of our lives and a little physical comfort from time to time is just what we needed.

You enjoyed it the most. After long runs, it would allow your body to loosen and relax. Once the children were pee and poop proof, they started to enjoy the hot tub fun. We would have contests in the tub. Games like: breath holding under water and running around the house in only a bathing suit on a winter’s day and plunging into the tub at the end.

We have had many conversations in the tub. Things like plans for the future and the special gifts that the children show us.

The hot tub is a family bonding appliance. Last fall, I drained it and stored it away for the first time in eight years. I had thought that we might sell it because at the time, I couldn’t imagine how we would get back those experiences. I was wrong.

Getting into the hot tub is a carefully planned event. You are able to walk out to the tub and sit on the edge. As you sit, I lift your left leg up and over the edge while you support yourself steady with the cane in your right hand. Then once you have straddled the edge, you swing your other leg over the edge. And slip into the water.

You must have someone to your left to support you incase you list to your left and be forced to blow bubbles as your head submerges. For the most part you are at ease in the tub. We discover that you have a little sensation to the left of your spine but you can’t feel anything in your left hand or foot. In all, the tub was a good experience. I think it has some therapeutic value for you.

Pep talks. We all take turns to give you pep talks. Tara, Quinn and I, as well as, all your friends. We are getting good at the pep talks. Just as you needed pain medication in the early days and the doctors ordered drugs on an as needed basis, you need emotional pain relief now.

The pep talks are the antidote to your dark thoughts. You need this positive attitude showered on you on a regular basis for treatment and prevention of the darkness. Talking out your emotional pain helps you but it is exhausting to us. I wear down trying to keep you up emotionally. I think that this is what made yesterday so tough.

Today, Tara, Quinn, Chris G, Harold and I tag-team each other with the pep talks. As a result, life is easier and the benefits are wonderful. “ I want to go home and be the best father and husband for my family that I can be.” You say as we drive back to Halifax. “I going to try to work at it. I know it will be hard. I have a lot to live up to. The necklace I gave you represents my promise to work hard at it.”

After dropping you off at the rehab, I realize that there will only be two more trips to the rehab before you are home. Then I realize that we aren’t even at the half-way point yet of your marathon. I feel tired at the thought that we are no where’s near the finish line … I’m beginning to doubt that there is a finish line. This thought drains my energy.

Last night, Tara was upset. She is angry. She has every right to be angry. She even identified her anger in our conversation. When I told her about the stages of grief and that anger was one of them and it was normal to have it, she seemed a little relieved. I recognize that her anger will only get worse if we ignore it as she enters her teen years. Angry teens do stupid things that can have big repercussions. I don’t want that to be in Tara’s life story.

Sunday April 4 – A New Beginning Together.

2010-04-09T13:26:00.001-03:00

I thought today was going to be a good day … it wasn’t.

It started out good. In fact, my waking moments almost seemed normal. I awoke because bony elbows and knees were digging into me and I could hear your voice mixed with the children’s giggles. You were teasing the children about Easter Bunny stuff. It felt normal … for a few minutes. By the time I got you out of bed and ready to go for the day the moment of normal had passed. We were both reminded of the lack of normal in our lives as I helped you to the bathroom.

We stall the children with breakfast and the two presents on the kitchen table helped with the delay … briefly. You surprised me with a present too. This isn’t something that we have done it the past. Easter has always just included a few Easter eggs, chocolate of course. We never did presents for the children or each other.

This year is an extraordinary year. You want to mark it with something for me. A necklace. You said that it represented a new beginning for us. I am touched but a little worried that this extravagance will become a habit. Hearing these concerns started you on the downslide. By this time, the children were ready for the real action and they had been patient.

You didn’t want to watch the Easter egg hunt. You didn’t want to see the fruits of your labour from yesterday. I persuaded you to come down to the mancave where your friend the Easter Bunny laid the eggs. Of course the entire hunt was over in about 10 minutes. Tara found 23 and Quinn found 18.

The house rule is that the eggs are family property and are to be divided up evenly between the children. Tara and Quinn negotiate various swaps to get the egg colours that they liked the best. I enjoyed watching them work on their bargaining and diplomacy skills. All parties left the bargaining table happy. If only world peace were this easy.

You gave me a necklace. A white gold necklace. This was the surprise that you hinted at yesterday. Juanita helped you pick it out. It is simple and beautiful and even though I am not a jewelry magnet, I wear it with love. For the cost of it, you could have given me two large truckloads of compost, which I would also ‘wear’ with love … all summer long as I play in the garden. You said, as you gave it to me, “This represents our new beginning together. I love you.”

It was great to see so many familiar faces at the church service. You chatted it up with members of the congregation and seemed in a better mood when we left.

I tried to keep the children busy with kid and doggy play dates. Meanwhile, you hovered between sadness and depression. You take me along with you down these dark and scary paths with you.

There are times when your words make me wish that I had never said yes to the surgery that saved your life. Being so caught up in your despair makes it hard for me to see things from the right prospective. I feel like I am kinder to my animal patients then I am being to you. How could I put you through this hell that you are in?

I start to question myself and I lose it. I can’t even find the breath to talk. You pat my head and tell me that you understand that I didn’t know that it would be this bad.

If this is what’s it like on weekends, I worry about what’s it is going to be like after your discharge date on April 22.

Being an optimist by nature, I have always thought, throughout this ordeal, things will get better once you are out of ICU or when the tracheotomy tube is out or when you can talk or when you go to rehab or when you can walk or do stairs.

Now I live in fear of the future. I know that once you are home, it will take a long time for you to heal emotionally from this. There are moments when I don’t know if I can hold out that long.

Quinn has embraced the juggling skill and is moving on to other applications. I suggest that he try bouncing on a ball while juggling. We have a bouncing ball that is designed to do this. “His eyes light up “Cool, Mummy, I am going to try that!” He has the ‘I think I can’ attitude. I hope it is contagious to you … and me.

Saturday April 3 - Carpe Diem

2010-04-09T00:04:00.000-03:00

The local homecare coordinator came to visit and meet you. She tells us what the homecare workers will do for you. We talk about a schedule and the costs. She explains the self-managed care program to you. This program requires that you are able to act as an employer. You hire and instruct the caregiver. You even over see the budgeting of money that is used to pay for the workers.

The coordinator tells you about the stroke that she had a few years ago. She is empathetic, organized and methodical and knows how things can go wrong and the pitfalls to watch for. I wonder how many of these skill and attributes are part of her and how many are acquired from her experience with a stroke. Regardless, these special skills will help you in your transition from hospital to home life.

I am very excited about this program. You will be able to find the right people or person for you and there will consistency for you and the family. I can imagine that in no time the workers will be family friends.

The rest of Saturday was a typical crazy Saturday. The weekly pattern of going to Halifax was starting to get to me. Now the activities that the children are involved in are starting to swell into a tidal wave. Being home makes it easier to keep them involved in their things.

This is a perennial problem, Just as activities, that started in Sept, are winding down, new summer ones start. This coincides with the beginning of the gardening season (my play time) and the busiest time of the year at work. One way or other, I will get through the next few months. It will be easier with you home and settled into a new routine.

Juanita took you shopping today. You are not a shopper by nature but you haven’t shopped in a long time and there are certain things you want that I won’t get for you. Cigarettes and lotto tickets. The children and I are busy baby sitting Maddie and Farley and zipping out to two singing practices.

In the afternoon when you get back with Juanita – Tara and Quinn and I go to the movie that I promised last weekend but couldn’t deliver because you didn’t want to see another movie. You are still in post traumatic stress syndrome from Avatar. It was painful to go to a movie in the middle of a beautiful day.

I am looking forward to the day that I don’t have to race from thing to thing.

Janice and Edwin and three of their girls come for a quick visit on the way home. I vent my frustration about the cigarettes to Janice. You overhear. So I ask you, point blank, “Did you buy any today?” “No” you said with a frustrated voice, “It seems that the thing I wanted to do the most gets forgotten. I got the lottery tickets but then Juanita did some fancy driving and we didn’t have time.”

I was pleased that you prioritized your shopping needs to include some Easter Bunny things that we will need for tomorrow over your smoking needs. You felt that the children should be spoiled by the Easter bunny this year. I was a little apprehensive about what you would get for them, especially since you went to the banking machine three times since yesterday.

You did well, You got some small chocolate eggs and a present for each of them. A Battleship game and a superball making kit. I thoroughly approved of the presents. You said that you liked Battleship when you were a kid and you could play that with them.

I’m very happy that you were thinking that way.

The money that you withdrew from the bank would have supplied several spoiled children for Easter. “What happened to the rest of the money?” I ask. You just smiled at me. “You’ll see.” You said cryptically. I guess I have to be patient. I have a hunch from discussions that we have had but I’ll wait and see.

“’Carpe Diem’ or ‘Seize the Day’ is what you want tattooed on your left arm. “It won’t hurt to put a tattoo there.” You said. I looked up ‘Carpe Diem’ and the actual phrase that it was used in by Horace, a Latin poet, is: “Seize the day, trusting as little as possible in the future". I’m not sure that is a good thing to put on your arm.

As much as I think that this is an attitude to aspire to, I also have learned the value of having hope of the future. When I first read these words, I hear them from the prospective that ‘trusting as little as possible in the future’ was about having bad expectations.

Maybe one should look at it from the other 180 degrees too. We don’t know what is in the future … really. Rather then focus on the possibilities that aren’t real, we should focus on the realities of the moment. As I write this, I can see my thinking coming to circle about the mediation thing again.

After spending a lifetime thinking about the future and what could be, I can see that Carpe Diem is going to be hard to do.

Friday April 2 – Healing is a Family Affair

2010-04-08T21:59:00.000-03:00

It’s another bad morning. You want me to drive you to the Cobequid Trail and leave you there to die. “I want to finish it … I want to finish what I begun, I want to finish dying.”
You feel so useless. When I try to point out what you can do – I strike out.

You keep saying, “I’m sorry, I’m sorry.” Sorry for what – I forgave you a long time ago, you need to forgive yourself. We need to move to the next step – there are things you can do – you have to focus on them, not waste our energy on seeking forgiven that has been given.

We need to get to the next step. The next step. What is the next step? The 12-step program suggests that letting God into your heart is part of it. I confess to you that I don’t know what the next step is but we will find it together. Perhaps the next step isn’t about letting God in, perhaps it’s about finding God within. When you find that energy, you will be able to find yourself again. I wonder if part of your soul died that day and that it is the real loss that you are grieving.

“I’ll try.” You said as I helped move to the chair. As you stood, we hugged. A real stand up hug … just like the hug I felt in my dream the week of your stroke. It felt the same. It felt good. It restored me.

You had breakfast with the children. A rare event in recent history. I slip out to have a shower and eavesdrop on you and the children talking about feelings and sharing feelings. “Communication is the best medicine.” You tell them. I felt good listening to the conversation. When I’m not there, you don’t wallow in self-pity, you step up to the plate and act like a great parent. Listening and giving sound advice. Helping them find the answers to the tougher questions in life. You can do this and you do it well.

At one point this morning before our stand-up hug, I was alone in our bedroom and feeling a little overwhelmed with the words that we had earlier. Tara came in and saw me, feeling weak and vulnerable. She sat beside me and put her arms around me and hugged me. An uncharacteristic action for her. She asked, “Are you OK Mummy?”

“Communication is the best medicine.” The children will be our salvation. They will help us through this recovery. Healing will be a family affair.

You said something today that I really want to get down on paper for proof. You expressed to me that the need that I have … to share our story … is OK with you. You understand if I have to ‘vent’ (your word) to other people. You feel badly that you can’t be on the receiving end and you are looking forward to the day I will vent to you. That’s right, you WANT me to vent to you! These are the words I want to mark. Words that most wives don’t get to hear their husbands say.

There is a lot of talk about the cigarettes. Out of frustration I decide to give you the last pack of cigarettes that you bought before your stroke. This is the pack that I dug out of the garbage last week. I was suddenly inspired to give you them. I am willing to bet that you wouldn’t smoke them because of their significance to you. They are a symbol.

You agree that you wouldn’t smoke them but for a different reason. “They will be stale.” You said “stale and too strong. I haven’t smoked in seven months, I can’t start with du Maurier!” You want to buy more cigarettes. Thank God it’s Good Friday and the stores are closed. I manage to evade your requests.

We agreed that if you smoked, you would not do it on front of me or the children and you won’t smoke in the house. As we discuss this, you read the anti-smoking message on the package. “Children see, Children do.”

I can’t picture you smoking. “I’ve not seen you smoke in the past and I have no desire to watch you smoke now.” You mime taking a drag off a cigarette. Hearing you suck air through your pursed lips gives me the creeps. I don’t want to think of you smoking.
You tell me about smoking when you were a child. Sneaking cigarettes and smoking them in secret. I had no idea that this started long before I even met you.

The children wanted to look at the cigarettes. Tara reads the package. “Your children are twice as likely to smoke if you do. Half of premature deaths among life-long smokers result from tobacco use.” Tara tries to figure the logic … “If we almost lost Daddy once, then that means …” her voice trails off in thought. I don’t want to hear her conclusion.

We explain to them what we had discussed about you smoking. “Daddy is going to work really hard at not smoking but it’s very hard … harder then running in a marathon. He may slip and smoke but he is going to keep trying.”

You felt a little lightheaded today. You try to explain. “It’s like I’m in another dimension. I want to take a can opener and open up my head and let the spirit out. It like in the Dr Suess book, Horton Hears a Who – “I am here, I am here!” I want to be a regular person again. I’m jealous of other people who can walk and run and laugh and drive and be normal.

A neighbor, Darren, stopped by to visit you. He came at a good time. I was running out of positive talk. Like tag team wrestling Darren spells me off and has a turn talking with you. Being a fellow runner and a devoted family man, he grabs your attention and you stop circling the dark thoughts for a while.

It didn’t last long. You try to get the children to imagine what life would have been like without you. You think that we would have had a better life. I don’t have to protest that much … the children try to set you straight. We can’t think about this as an alternate history, because it didn’t happen that way.

This lead to a discussion about the day of your stroke. You asked me to read the first entries in the journal. I read and we all take turns crying. You started and Tara consoles you. I can’t even say the words at times. Tara cries and Quinn says, “lets not talk about it anymore.” He takes a few breaths and waves to me to continue.

Hearing the words helps us purge some of the bad feelings. A healing act. You confess to me that you read that part of the journal yesterday at the hospital. You concluded that you would never know what we went through and we will never know what you went through.

I realize as I write tonight that the family plan for healing is very alive and well in our home. As the children pep talk you and rally you back to a better place. Reading the journal reminded me of all the feelings I had that first day and how the children were my light and reason for hope.

Healing is a family affair.

Thursday April 1 – Relationships and Feelings

2010-04-06T22:16:00.000-03:00

Today, on my way to work, I was thinking about relationships. Normal relationships verses ‘abnormal’ relationships. A normal relationship is a two-way exchange of information and sharing feelings and ideas.

You are surrounded by abnormal relationships while you are at the NSRC. I suppose that the medical community must try to distance themselves from the patient. A necessary skill to avoid compassion fatigue. However, I do wonder how helpful this one-way relationship is to the patient. This illustrates to me very vividly why it is so important to have people around a patient who belong in the patient’s life in a ‘normal’ capacity. A healing energy comes from healthy relationships.

This morning Tara was very helpful. She got up early and fed the cats and put Annie out to pee. She then took Quinn’s order of breakfast. It all seemed too good to be true. Then I realized what she was up to. It’s April fool’s day! As I get my breakfast, I see her slip some cat food into Quinn’s peanut butter sandwich.

Quinn suspects right away that something is up. He eyes the sandwich with suspicion then he takes a bite. He smiles and chews and shallows and refuses to give Tara the satisfaction of being a pranker. His resolve to outsmart Tara fades before he can take to second bite. He can’t talk or even swallow again. He runs to his room very upset. I follow him and rally his spirits with the advice that revenge is sweet and best served cold. Once I explain what this means, he smiles at the thought.

Marsha brought you home from the NSRC after her work today. You arrive just in time to come with me to pick up the children and take them to piano lessons. Tara and Quinn are excited to show off their pianist skills.

In the evening, your tell me about your new OT. You really like her but you are worried that you are going to alienate her. You have been asking her some probing questions and feel that you hit a nerve with her. You can’t seem to accept that she wants to keep your relationship professional. “Possibly” I point out “She doesn’t want to burden you with her problems.”

You feel that you “must have been saved for some reason.” You are trying to figure out why. “Maybe I am supposed to help her in some way?” I suggest that tomorrow, you could visit Donald. Maybe you were supposed to help him or any number of people who know or will meet in the future. Who knows their destiny. You just have to have faith that your life has a reason.

“I should have died … I was robbed of death.” These are your bedtime thoughts. They are hard thought to hear. I know that to heal, you must verbalize these notions but that doesn’t make any easier to listen to them. Especially since I feel responsible for you having the surgery that saved your life.

When I said yes to the surgery, I didn’t picture life quite like this. I didn’t know what the picture would look like. When I’m close to you physically and emotionally, I get swept up in your depression and it is hard to bare. I feel horrid. Then I try to imagine how you feel. It’s too much to bear.

My only thread to sanity is to escape from your words and the feelings they evoke. When I do this try to escape, I feel worse. I created this hell for you why should I be able to escape it when you can’t.

I have to find a better way to cope when you are home fulltime.

Wednesday March 31 – Connecting and Connections

2010-04-05T22:05:00.002-03:00

Still a busy signal on your phone – first thing in the morning. “It must be off the hook, who else would be calling you at 7am?” I call the nurse’s station and it was off the hook. I finally reached you and you were worried when I didn’t call. You feel the need to connect every day. You are craving real relationships.

You were worried that I had left you for someone else! This has been a worry for you over the last few weeks. I find it frustrating to talk to you about this. “Where would I find the time?” I ask you. “Life is far too complicated as it is, I have no interest in making it more complicated.” My logic doesn’t sink your fears. I guess irrational fears are … just that irrational. Logic has no effect. I try different tactics. Still no success. Perhaps this is something that time will heal. I hope so because this is a conversation that I don’t enjoy at all.

Your PT timed you today. She timed a lap of the PT floor. You walked, alone – you think, down the hall cut across by the elevators and back up the hall to the PT gym. It took 9min 45sec. Not a fast pace but it is a good baseline to measure yourself against.

You like your new OT. With most of the medical professionals who have helped you and you like, you would like to get to know better. She would rather keep the relationship professional.

Pre-stroke, you always had a knack of asking probing and often personal questions of people you want to know better. This has not changed. This is your way of reaching out and connecting to others. The problem with this approach, in a hospital setting, is that the medical staff want to keep their relationship with you professional. This relationship is a one way thing. They get to know all about you but you don’t get to know much about them. This makes relationships rather artificial and as a result they are not rewarding.

When you get home you will be able to invest yourself in real relationships with family and friends that are rewarding and healthy.

Today I connected with an amazing family from Tatamagouche. Joan, the mother, is very involved in brain injury recovery. She has two very good reasons to so passionate about brain injury recovery. Her daughter had major brain surgery that left her with half a brain and her husband had surgery last year for a brain aneurysm. Like you, he is a runner and has run in twenty-five marathons!

Joan’s idea is to help brain injured survivors help their recovery by using their talents that they have and allow family, especially children, assist in the recovery. I made a promise to visit when you get home and we find a rhythm to family life again. I think that you will want to be involved in this project.

Once again, I am in awe of the frequency that people find us and we find people who wish to share their inspiring story with us. I picture us as neurons, making new connections with others and building an amazing machine that will make a difference. New connections every day.

Tuesday March 30 – A Visiting Team.

2010-04-05T22:05:00.001-03:00

My day starts out like every other day. Crazy. I have to rush to my eye doctor in Halifax for an eye appointment. I rush to wait. I waited almost two hours only to find out that my bad eye, is worse. I am losing vision in my right eye and you have lost it in your left. Between the two of us, we have one pair of good eyes. As we age, it will be the blind leading the blind. What a team.

I get more drugs to help save my sight and prevent further damage to my eyes. I wonder aloud to my doctor, about the possibility of stem cell therapy helping my sight in the future. He isn’t very helpful. I expect the field is too new and little is known yet.
Thankfully, my eye condition is slowly progressive and although the left eye is affected the vision is still good. I am confident that in time, there will be other treatments available.

When I discussed stem cell therapy with your doctor a few weeks ago, I mentioned that I figured that stem cell therapy is going to flip rehab medicine upside down. Your doctor agreed. Stem cell treatment is going to rework a lot of medicine, as we know it

Timing is everything. Will the steep learning curve for stem cell research and application be accomplished by the time we can capitalize on the stem cells therapy for you to get the best results?

My ophthalmologist asks at the end of the appointment how you are doing. I try to give him the inventory list of your losses. The words still get caught in my throat; Hemiplegic, hemianopsia and left neglect. I will have to get used to saying the words but it is hard to mouth them.

On the way home, I thought about your visiting team. If I can get together a group of people who would visit you regularly then we would have a large part of the odd hours that I will not be with you covered. I have already had a few people say that I was to consider them to help out.

In many ways, this is like our situation from the fall. So many kind and loving people opened up their hearts to Tara and Quinn. Once again I find myself reaching out to our close knit community to help with your recovery.

I have started a list. If any readers of the blog, who live in or around Truro, wish to visit Chris occasionally, please let me know by emailing me at ccashen@eastlink.ca.

No phone call tonight. Your line was busy, busy, busy. I hope that you aren’t upset with me like last Thursday when I could not get through.

Monday March 29 – Focus on the Feelings.

2010-04-05T22:04:00.001-03:00

It wasn’t hard to get the children up today. You are still home and it’s a school morning. They are both excited. You are going to go to the school with them. Like most siblings, they fight over who is going to get push you in the chair and which classroom you are going to visit first.

It’s a great visit. So many familiar faces. You would spend all day there if I hadn’t dragged you away. You know all the children in both Tara and Quinn’s classes. You volunteered with the classes since they started in their primary year.

You roll around the classes and name each child by name and asking questions about their life that you missed. Occassionally, you would stumble over a name but you got most of them right. I could tell you are pleased with yourself that you remembered all the important details.

We are almost late for your PT session. Just as we roll in the door, you recall the PT saying that she had cancelled you session today. You had forgotten to tell me. Oh man, all the hurry and worry to be on time for nothing.

We had a psychologist appointment in the morning. I had forgotten, but the psychologist hadn’t and tracked us down. I guess we are even in our forgetfulness – Your excuse is that you had a catastrophic stroke.,.. what’s mine?

It was a good session. A lot less tears then the first time we had met together. There were several topics and he said, “We covered a lot of ground.” He said. You wondered aloud if the psychologist gets paid more for covering a lot of ground. He smiled.

I couldn’t tell if covering a lot of ground quickly was a good thing or a bad thing. Oh well, I guess it’s really more important to think of success in terms for how you feel at the end of the session. I think we both felt good.

The epiphany for me today was centered around my thoughts on your desire to smoke. On the car ride to Hailfax, we talked about this and I said that I figured that the reason you told me about your smoking was because you, subconsciously, wanted my help in trying to shake it. You had tried before on your own, but it is hard enough to quit. To quit without support must be very hard. I told you that I would be strong for you if you needed me to be strong.

I even took the two packs of cigarettes out of the garbage can where I put them last week. I wrapped up the open pack in 29 layers of duct tape. I said that I didn’t want to enable you to smoke but it had to be your decision to quit. So I gave the wrapped package and said that the 29 layers of duct tape would be hard to get through. It will give you lots of time to think whether you really wanted to smoke or not.

I wanted to make starting to smoke as hard, if not, harder then quitting to smoke. 29 layers of duct tape seemed like a good symbolic barrier to smoking to me.

When I shared my approach with the psychologist, he frowned. He said I got it all wrong. He enlightened me. “Don’t make smoking the battle ground. Chris has to want to quit.” He said that when you talk about smoking, it is because you are trying to find a way to cope with your feelings at the time. So I shouldn’t focus on the smoking … I should focus on the feelings that you have.

My epiphany is that the desire to smoke is a symptom of unpleasant feelings that you need to explore. I am actually relieved with this view. I am not a confrontational person by nature, I was uncomfortable with the idea of physically preventing you from smoking. I like this approach much better.

I would rather explore feelings then run interference.

We talked about the Sunday afternoon and how the children reacted to your dark mood. I realize that I have to recruit help to be with you while I do things with the children. It’s not fair to them to deny them their childhood pleasures. I don’t want them to feel that you are to ‘blame’ for the circumstances they find themselves in.

At the end of the day, I met with your new OT person. She is the third OT you have had since you started at the rehab. You think she is new but she was actually your first OT. She worked with you in the fall at the Halifax Infirmary. She gave you your first chair. Now she is helping to order your, hopefully, last chair.

I like this OT. She was great and I sense that she is very keen on her position. She reviews what she knows about with you and the layout of our home. We trouble shoot problems.

I ask her about a therapy of left neglect. The Lighthouse technique. Your doctor had suggested it to your first OT, but nothing was done, and when the interim OT took over, he wasn’t interested in starting something new. Thankfully, this OT is interested and wants to start this treatment with you. I feel very positive about your ‘new’ old OT.

Sunday March 28 – The Seven Year old Adult

2010-03-31T09:42:00.003-03:00

You start the day in parent mode. First thing this morning, you advise Quinn, “I want you to have fun today. Do your best and have fun that’s all that anyone could ever want. I am very proud of you.” Quinn smiles and says “I'll do my best.”

We actually got to the meet a few minutes into the warm-up period. As we get in the door, Quinn pauses and says to us in a serious parent like tone, “When I’m on the floor, don’t try to get me to leave the floor because I’m not allowed to leave and I shouldn’t be distracted.”

In past meets, we would try to see how many times we can get Quinn to wave to us during the event. I guess those days are numbered – he is growing up. We watched and I tried to videotape Quinn doing his events. Quinn did do his best and was quite pleased. So pleased that he actually took a moment to wave to us a few times. He was rewarded for his efforts with a ribbon for the pommel horse and a Dairy Queen lunch with us. He had a good morning.

We met up with Tara when we got back into town. Her choir, the Truro Youth Singers, performed at the church. She wanted to see Quinn do his thing but was torn about the commitment to the choir. When it came down to it, she chose the choir. Although I’m sad she missed seeing Quinn’s meet, I’m glad that she has a strong sense of commitment to the choir. After all a choir is a team thing.

I suggest in the afternoon that you help Quinn make the devil sticks. You don’t want to do devil sticks with Quinn. “I am useless I can’t help him.” You say. You can’t imagine how you will be a role model to the children when you can’t find the drive to do a simple thing like oversee a project like this.

The other day, I had suggested that Tara could go to a movie this afternoon. When it became obvious that I can’t leave you alone for fear of you trying to get up by yourself and falling. (you have done this twice now – when I’m out of the room.) I had to renege on my offer of a movie. Tara couldn’t take this decision without complaint. She has wanted to do things with her friends for months now. I have been putting her off, saying, “It is just for now, when Daddy is home, life will get more normal.”

“Well, Daddy is home and I still can’t do things with my friends.” She cries. I explain that we have all had to make sacrifices and that she would have to be patient. I said she should consider the sacrifices that you had made just to live. This just frustrated her more and she stomped off to her room. She is angry at you and angry with me.

You start to sob about being a burden. Quinn puts his arm around you and tell you, “We want you in our lives Daddy. We want you here for us. You are still the same Daddy. We love you.” Quinn’s kind and supportive words without tears seemed very grown up. This is our sensitive little boy, who would cry and not know why at other times. Now he is supporting you.

I could hear Tara’s crying in her room. I go to her – she doesn’t want to talk. Finally she does. Tara feels like an outsider – not able to go to the movie and then we all missed her in the choir performance. We both have a good cry. As I am trying to collect myself, Quinn comes and reaches out with open arms ready to give a good strong back-patting hug.

Tara’s melt down lead to your and my meltdowns. Quinn carried us through it all with hugs and positive thoughts. He is a seven year old adult.

The children and I recover from our weak moment and continue with our day. You can’t climb out of your despair. You start to cycle through the ‘I don’t want to be a burden’ dialogue again.

We all have bad moments and times of weakness. That’s way we need each other… to help the other through the rough times. Today was Quinn’s day to carry us. Tomorrow it will be someone else. We are all here for each other. It is a team thing.

Shortly after this, Erin arrives at the door, as if sent by a divine power, she comes to your side to hear your worries and help you deal with them. Within a few minutes, Harold arrives and he sits beside you with his arm around your shoulders, lending an ear and a thoughtful voice to your fears. Being a fellow survivor who also knows the pull of cigarettes, he can identify with your feelings.

What gives us meaning in life? Some might say being essential to another’s wellbeing is what makes us human. I think that is a trait shared by all animals but it is something that humans tend to forget but it is the healthy part to any relationship.

By the evening, I find you and Tara are cuddled in your chair. It’s bedtime for Tara but I didn’t have the heart to pull her away. The two of you had made up.

On Friday’s Tara and Quinn joined a running club at the school thanks to Karen, a teacher at the school who watches over Tara and Quinn on Fridays. This week they were given handbooks to read over about living a healthy active life. Being a detail oriented person, Tara has started to fill in the diary section that tracks what she eats and the activities that she does. You are proud of Tara for being so diligent. “If you run 20 km then I will give you my GPS watch.” You tell her.

She is happy now, She has a short term goal.

Saturday March 27 – Finding the Good Guy

2010-03-31T09:42:00.001-03:00

This morning, Quinn’s eyes light up when we showed him the devil sticks that we ordered for your PT. Enclosed with the devil sticks is a booklet outlining the other juggling things that one can order. Quinn immediately starts to plan how he is going to make money so that he can buy other juggling gear. A diablo is next on his ‘to get and do' list.
The two of you talk about how he can make devil sticks to sell. Quinn and I make a short list of things we need. We got all the things we needed to make several devil sticks at Home Hardware for the cost of one set online. He is very excited about this as a project.

You visit Donald again. It was a much better visit then last week. Donald was very tired before but you had a good chat today. Later in the day Janice, from the church, came to visit you. She offered up news of the church and her recent visit to Australia. You really enjoy your visit with Janice. The two of you have a special relationship as co-workers at the church. She misses you at the church. She started running, partially, because of you. This summer, she is off to Iceland to run in a half marathon to raise money for diabetes research.

Today is my Mum’s birthday. We had dinner at Juanita’s. You and Mum seem to have more in common now with all your combined hospital experience. Between you having a more talkative nature and wanting to share, the two of you talk more the I ever seen you talk together before.

Tara is spending the night at Juanita’s because we are double booked tomorrow. Quinn has a gymnastic meet in Sackville and Tara’s choir has a performance at the church in the morning. I insist on making it an early night. If we can make it to Sackville by 8 am, It will be a miracle.

At bedtime you reflect on the day. You are searching for your roles. “Visiting Donald is one thing that I can do.” You say. “I am a nice guy and I want to be really good to the people in my life and show them how much I care about them.”

Somehow you have forgotten that you are a good guy. Connecting with family and friends will help you find the ‘good guy’ inside you again.

Friday March 26 – Bedtime Stories

2010-03-31T08:56:00.001-03:00

I talked to a psychologist today at work. She is a dog person and visited today with one of her dogs. I asked if there are different psychological approaches for post stroke recoveries verses other mental health issues. She said that there are. The psychological staff at the NSRC had suggested that your care would continue when you come home. I am very relieved knowing this because like every other part of the brain, I can see that this brain part heals slowly too.

After work today I rush about picking up a few things to help Chris-proof the house. I bought a bath bench and shower nozzle. I found a few more things that I need for your sling glide to the bathtub.

The OT suggested that we get a ‘M-rail’ for the bed. I am unsure what an M-rail does but a I do know that you have difficulty pulling yourself up to the head of the bed. You need a grip to pull yourself up, so I strategically placed a large eye in a stud and tied an old dog leash to it. This should work well to pull yourself up to the head of the bed.

We haven’t got the toilet seat frame yet but I have a borrowed commode over one toilet and a 2x4 screwed to the counter beside the toilet that enables you to use it to push up. You tested the system first thing when you got home. Once you got settled on the throne, you shook my hand and delighted in the effectiveness and simplicity of it. You want to use your wood craving things to finish the top of the 2x4 off nicely and I know two children who would love to paint and decorate Dad’s ‘push up posts’!

No phone call last night – big mistake – I should have called – you were worried. There was no answer and then it was busy and then it was after 10pm when the patient switchboard shuts down. You worry about things that would never happen. Logic tells you that you these are not rational thoughts but you still think and obsess on them anyway. You can’t help it.

I asked if you smoked. “Yeah, three.” “Oh no” I groan, “Really?” “No, but I thought about it a lot.” You said. I am proud of you. One day at a time. This is another week under your belt ... a lifetime to go.

Juanita and Wayne brought you back from the city. The first thing you want to do once you are in the house, was go to your mancave. This is the first time you entered it on your own steam since August 30th. You give a big sigh and said you felt like you were home. You quickly get settled in but struggle with your TV remotes but that is excusable – I struggle with your three different remotes. It turns out it wasn’t us at all, it was the a cable problem. A quick phone call fixed that.

You are not as interested in TV since your stroke. I had feared that the stroke was going to make you into a TV watching zombie. You are far from it. It seems that the only things you like on TV are reruns of your old favorite comedies. Steinfeld, Friends, Corner Gas. I ask you if you want to watch the mountain of baseball games that I taped last fall during the playoffs. “I don’t understand it anymore – I tried watching some spring training games but I can follow them.”

While this may be music to the baseball widow’s ears, I worry about what this means. Is this a symptom of other deficiencies that we haven’t identified yet or is this something that just has to ‘reconnect’ again? Watching MLB, especially your beloved Angels, was a passion for you. If this passion is lost, what other passions are lost. I hope that this is just a sign of an inability to concentrate for long periods. With time, I hope it will come back.

At the children’s bedtime, you read to them. ‘The Diary of a Wimpy Kid’. I tidy up your mancave so that it is free of tripping hazards while you read. You didn’t miss a single left margin while reading. This is a big improvement from Christmas time. Time seems to have fixed this. I am glad because the local home care coordinator dropped of a rather thick booklet about self managed care. It explains everything you need to know as an employer. We have some lengthy light reading to do together. That will be our bedtime reading

Thursday March 25 – Homecare Plan is Taking Shape

2010-03-30T23:08:00.001-03:00

Today I got a call from the homecare coordinator at the NSRC and also the local contact. It turns out the local coordinator is a neighbor. She feels that the self-managed care program would be ideal for you. She must perform some cognitive tests done first to ensure that you are able to supervise a self-managed care program.

In essence, a self-managed care program allows you to hire a person and develop an employer – employee relationship. Once that this is in place, the provincial homecare program will give you funds to supplement the cost of your home care. This system provides a lot of latitude. We can hire who we want and can direct the employee to do specific tasks to help you through your day. A job description should be done and an evaluation to provide feedback. With me working more, we would need someone for full time hours.

To start the local homecare coordinator envisions home care for about 6 hours a day starting at 7:30 or 8am until 2 pm. After this point, we would have to arrange of someone to be with you the remaining time that I can’t be home. This is where friends and family will be a huge support.

I feel really good today – almost enthusiastic about the future – a lot of the reason is because you are feeling positive and I can see a plan taking shape with you at home..

After piano lessons, the children and I go shopping for a shower nozzle and grip bars. Tomorrow I will get a bath bench. Tonight, I installed supports by the toilet for you to support yourself with when using the throne. They are simple and made with a couple of pieces of 2x4’s but I think they seem to work well. You will get to try them out this weekend.

I missed talking to you today. When I tried to call, there was no answer. Then the next thing I knew, it was after 10pm and the patient calls won’t go through after 10 pm. I hope you don’t worry about me not calling.

Wednesday March 24 – Thinking Like a Parent

2010-03-30T22:29:00.000-03:00

When you have a good day – so do I. I slept well last night and awoke this morning full of energy. Our great phone call last night still has me floating above the clouds. I can see a 180 degree turn from this time two weeks ago. I think the last week in Halifax together as a family and the weekend home and visiting Donald, Marsha,Chris G and the church was instrumental to your mood shift.

Spring is coming and I can feel it in every way.

This morning, I spend a long time on the phone, Bringing people up to date on your progress. I have started a list of people who might be able to commit a few hours here and there to spend with you to help with your homecare when you get home. With my somewhat erratic schedule and being oncall at times the 24 hour adult attendance is going to be hard to achieve.

We will have to be creative in how we do this. Eventually, we may not need an adult with you at all times, but until we can find a routine and establish some safety rules and provide a safety net for you, the 24-hour supervision is a must.

You had another good day today. You have a strong voice and you have hope.

“I think I know what I want for a tattoo on my left arm.” You say. “A unicorn, with the date of the Boston marathon when I first ran it and a space for the date of when I run it next.” The unicorn is a special symbol because it is part of the Boston marathon logo.

I ask you what you think about signing the children up for soccer this year. They did love to play soccer but transporting them could be difficult with me working. We decide that we should all take the summer off and just spend time together as a family. “We need to find our roles again and just hang out together.” You say. I have to agree. This summer would be a good one to take off from the usual running around between soccer and day camps and baseball and swimming. We need time just to be a family again.

You are thinking like an insightful parent.

I tell you the plan for the weekend. You are going to come home with Juanita and Wayne on Friday and stay until Monday morning. This way, you will get to see Quinn at his gymnastics meet on Sunday morning.

I tell you that Quinn was sad again at bedtime. It seems to happen a lot. I think that when he puts his head on the pillow, he starts to take stock of his day and think about the future and counts days. Thinking about all the days that you haven’t been here makes him sad.

I really think the time you spent at home last weekend has helped you start to see a future that isn’t so bad. “When I get home, I will need lots of rest. I want to let Quinn sleep with us occasionally. I think it will be good for both of us.

There you go again … thinking like a parent.

Tuesday March 23 - Hope Blooms

2010-03-30T22:20:00.002-03:00

It was a late morning this morning. The children were hard to get out of bed and I found it hard to get going too. It’s the weather I think. Last week seemed surreal with the great weather now a gray wet day seems disappointing. We walk to the school knowing that ‘late slips’ are a given. Tara tells us about the best dream she ever had. You were in it of course. No wonder she did not want to wake up. “I want Daddy to come home … I miss him.” She says.

I notice that the crocuses are coming up that Paula planted in the garden last fall. When the bulbs had arrived in the mail, I was in a frenzy. I felt overwhelmed. Everything seemed out of control and just as I was starting to think I couldn’t do any more things, the bulb order that I made before your stroke came in the mail. I couldn’t imagine when I’d find time to plant the bulbs. Then Paula, a fellow parent from the school, offered to do some gardening for me. Now the fruits for her labours are emerging through the soil and will be blooming within the month!

I find it so exciting and comforting to see a plant make it through the winter. When I see the crocuses emerge through the soil, I think about the miracle of life and it gives me hope.

On the walk to work, Annie and I got behind a smoker. The smell made me gag. How could I not notice that you smoked? The smell is so strong. Maybe I am just extra sensitive to it now since your confession and my subconscious amplifies the smell.

A long-term client, Margo, brought in her new puppy today. She and her husband have always been cat people. Margo lost her husband, Gordie, a few years ago. Now she still has cats but she has also gone to the dogs.

Gordie had a stroke too. He survived the stroke only to be taken by cancer a few years later. She shares with me her experiences. “Cherish the memories that you had before the stroke. They were a gift and now you have a new gift. A gift of a second chance.”

Your PT was sick today. She had come to work but you told her that she should go home and look after herself first so that she would be able to help you and other patients later. After your session with her she went home. You want to get her a special present for your graduation day from the NSRC. “Devil sticks!” You exclaim. “I want to get her devil sticks.” Your PT seemed to really enjoy playing with Quinn’s devil sticks last week.

We had gotten the devil sticks in Newfoundland last summer. Erik had taught the children the basics of the craft and Quinn has been perfecting and experimenting with them ever since. Your PT seemed fascinated with them. She started twirling the flower stick right away like she had been doing it all her life. I think she must have been a majorette in a past life.

Devil sticks would the perfect present for her.

You sound good tonight. You seem strong and positive about the future. I love talking to you when you are like this. Your strength is contagious. When I called Fran shortly afterwards and Luiz answered. He said “Your voice sounds strong and good.” I guess that your strength is contagious.

When you have a good day … my day is great.

I am falling for you all over again. Where have you been for the last few years. I had lost track of the great guy that you are. This stroke has brought you back to me. Your positive energy is spilling over to the future. “I want to work on who I am now and get better.” You said. “I need to find myself and my place in our family when I get home.”

You had a dog visitor today. A Lab. He was a nice dog and you enjoyed seeing him.
Whenever you met a new dog, your first gesture to make friends with the dog was to put your two hands together and make a squeaky noise with the palms of your hands pushing together. This seemed to always interest the dog and fast tracked your friendship with any canine.

You can’t make those sounds anymore. “I need two hands to make the sound.” But rather then dwell on it, you simply say. “We should get another dog. One that I can train.”

We talk about the spring and summer that we are looking forward to. The Cabot Trail Relay is on the last weekend of May. We are all very excited about going to Cape Breton or ‘Cate Brookin’ … as the children used to call it. Probably because we would always visit our friends Kate and Brook and their family. This year Annie will get to visit with her sister and two brothers and her mother. It will be a great time.

As we talk about this I realize that Tara’s dance recital is on the same weekend. “Oh no” I gasp. “How am I going to tell Tara?” You jump right into parent damage control mode. “Let her know and let her make the decision of what to do. I know if she is prepared for the choice, she will decide that she would rather see her special friend, Linnaea, more then dance at the recital.” I know that you are right. Your parenting intuition is right on.

Tonight Quinn and I put up the last handrail to your room. Now the whole house is assessable to you. Tomorrow, I am going to get a bath bench, shower attachment and install small posts in the bathrooms by the toilets to make getting seated on the toilet a little easier. Then, all we need to make is a hand rail to the garage and all the significantly big things will be done.

At bedtime Quinn started the counting again. Counting to the weekend. Three days. Counting to Easter. Twelve Days. Counting to the days until you come home. Thirty days. And finally counting to his birthday. Forty-six days. I think this is his newest stalling tactic to prevent an early lights out.

Tara decides to compose a song for your. As she lay in her bed, she hummed a tune while searching of the right words in her head. This song is for you and she wants to call it ‘Together Forever’.

Paula planted bulbs last fall and they will bloom soon. HOPE. Last fall, I planted my love and time with you and it is starting to bloom too. More HOPE.

Monday March 22 – Find Our Family Rhythm

2010-03-30T22:20:00.001-03:00

I have been thinking about my ‘Me time’ as you call it. Right now Walking to work with Annie is my Me Time. This morning I opened an email from a friend. Sue’s email was about dogs, a subject close to both our hearts. It suggested that dog’s purpose is make you stop and think and appreciate the moment. “When someone is having a bad day” It said, “Be silent, sit close by, and nuzzle them gently.”

We need this reminder because sometimes we forget to appreciate the moment. I sighed as I read it. She’s right, and I am very guilty of forgetting lately. Recently, when I’m having a bad moment, Annie will nuzzle my elbow for attention. I was thinking that she wanted the attention but maybe she knows that I need the attention and is trying to tell me something. From now on … I will stop and think and try to appreciate the moment.

While walking home with Annie today, my mind was dancing about with ideas. I was thinking about sound. Hearing is a sense that comes from both sides and the brain processes the information so that one can tell the direction of a sound without thinking about why you know the direction. This must be because the brain integrates the auditory information somewhere. Your hearing seems fine so I wonder if there is some way that hearing can be used to compensate for your left neglect and visual field cut.

On a CBC radio show, I remember hearing about a woman who had a chemical accident that cause blindness. Since then, she has developed a special ‘seeing’ device that allowed her to ‘see’ with her ears. Her glasses have a camera, which changes a visual image into sounds that she trained her brain to ‘see’. This seems miraculous to me. I wonder if there is an application for your deficits.

As I climb the hill towards home, I start to design, in my mind, a hoist to go in our bathroom so that you can into and out of the bath tub safely. As my mind circles about the obstacles in our bathroom to building such a devise, I stumble on a memory from last year. The air is warm and the ground is soft and the light of the day all transported me to a time when we were hiking in the woods on a trial in Earltown with you almost a year ago. Oh, How things can change in a year.

Just as I was starting to feel a wave of grief come on, a car pulls up beside me. It was Karen who looks after the children on Fridays. She offers me wise words of hope and support. She said exactly what I needed to hear right now. “When Chris comes home, you will find the rhythm for your family again, meanwhile it’s one day at a time and have faith.”

It feels so good to hear that message from someone else. My own voice of hope gets hoarse after a while and I can’t hear it so well. It helps when other voices join in and increase the volume of the message.

She closes her words of wisdom with a quote from ‘Kung Fu Panda’. “Yesterday is history and tomorrow is a mystery, today is a gift … that’s why they call it a present.”
Only another parent of young children can appreciate the wisdom and significance of quoting from a children’s cartoon.

It was a good day for you. You had that chance to smoke … but you didn’t.
“One day at a time.” You say echoing Harold’s wise words about not smoking from the weekend.

This is the last week for the PT student who is visiting from Sweden. You think the world of her. She is going to be a great PT. She seems to intuitively know how to move with the patient to get the best response. As I have watched the PT and her students work with you I can appreciate a intuitive nature that develops where the PT is so connected with your body mechanics that they know what you are doing right or wrong long before the patient does. It is a skill that I suspect takes a long time to develop.

Each patient would be like a new dance partner. The PT has to learn the subtle body mechanics of each patient and adapt their movements wit the patient. I got a small taste of this past weekend. It is mentally exhausting to constantly be aware of another human’s body. I found myself hushing the children when I had you walking or doing stair. I don’t dare multitask while walking with you.

We talk for quite a while on the phone tonight. You sound good and strong and you sound hopeful about the future … whatever it will look like. You said “I treasure the now … I want to live in the now and not hide my feelings.”

This is a good example of the ‘new you’. There are parts of the old you that I haven’t found since your stroke. The parts that make up the new you have always been there but they are magnified. It will take a little time to get used to the more open, honest, philosophic and sincere version of you. But that’s OK … we have the rest of our lives and I going to love to do it.

We are so much closer then we ever have been. It is mostly because you are talking and sharing and being open about all your feelings and thoughts. It’s a double-edged sword. The sharing can be a little over whelming sometimes but on the other hand, I feel very connected to you because of the sharing. I think that this new level of communication will be the basis of our new family rhythm.

Sunday March 21 – Walking in Church

2010-03-30T22:02:00.000-03:00

We all slept in! A sleepy Sunday! We planned on going to church this morning and as usual, you want to be there early. You want to get there an hour early! So I started the day rushing from task to task. I get you set up to shave yourself while I have a shower. When I get finished you had done a beautiful job with the week’s growth of hair on the right side of your face but the left was almost untouched. I attempted to shave the left side. We were down to one blade that didn’t appreciate the job I was asking it to do … it tried to plow through the week’s worth of hair. Needless, to say, the left side was looking a little raw, by the time I got finished with it.

I think that shaving could become a combined effort between you and Quinn. Some day he will have to shave. He is very fortunate to have a practice face that doesn’t have great sensation to hone his skills on. When I share this thought with you, you weren’t too thrilled.

As you finish off your bathroom stuff, I play a CD on the computer that Anne sent you. She and a group of musician friends, who she plays with recorded some songs. She thought that one song in particular would touch your heart. She was right. ‘Carrin’ On’ – brings you to tears. I print the words and you weep and ask me to play it again and again.

We get to the church with 15 minutes to spare. I am honestly impressed. You think we could do better next time. You brought along with you Anne’s CD to be played in the church some day during an offering. You want to share the gift of music with other people who you love.

Jay’s sermon today was ‘What is Your Name?’. It was a very appropriate sermon to hear. He discussed how we are named by our world around us. Sometimes we let these names define us rather then allowing us to define a name. We don’t name ourselves. You have been struggling with your identity and how you see yourself and others see you. Your most recent struggle is ‘Stroke survivor’ rather then ‘Stroke victim’.

After the church service you reconnect with many people from the church. You feel good. This is your home. You exchange greetings, well wishes and hugs. You want to show off what you can do. So, for a few of the congregation who lingered behind, you show them what you have learned at the NSRC. The PT’s words – “no recreational walking” - did pass through my mind but I figured what’s the harm, let’s try. You did. You walked a good 15 feet before seating down. They were all impressed. After you showed off you new skills, I circulated the pledge sheet for the March of Dimes. You got your first sponsors.

Later in the afternoon, you start to consider what you would want for a tattoo. “What about ‘The path of least resistance’ tattooed on my left arm?” You ask me. “You gotta do better then that!” I reply. I can think of so many great inspiring and thought provoking tattoos, but I don’t want my thoughts invade your thoughts. This is your idea, You need to run with it ... after all it is your left arm.

Chris G came to visit in the afternoon. The two of you talked about what you can do after Chris retires in June. He is interested in model planes. This is a passion you had many years ago. You even have a half-finished plane in the basement of the church. You think that your plane building and flying days are over – you need two hands to flight a model plane. You are more interested in model trains.

I think the two of you could pass many happy hours talking about planes and trains. Sounds like the two of you could have a happy marriage.

On the drive back to Hailfax, You are distressed. You want to be home for the children. I think this is an excellent example of your parenting instinct coming back. You say that if you aren’t home Quinn will miss bedtime stories. You won’t be here tonight but you will be here for the rest of Quinn’s childhood. To be present for emotional support and mental stimulation for the children is the real part of parenting. This was wonderful sight to see you reading to Quinn last night.

On the drive to the NSRC, we cruise by the new building across the road. It is going to be a research facility with the Brain Repair Center there. This is Dr Mendez’s baby. It is well placed. From your room window, you can look out at the building and watch the progress. I have noticed a lot of progress in just the last six weeks. When you first came to the NSRC, I thought it was going to be a parking garage because it had that open concrete look. Now windows have filled in the spaces and it is taking on the appearance of a high tech building. This building represents my future hope for your recovery. Brain Repair with stem cells.

On the drive home, I reflect on your first weekend home. You played all the important roles this weekend. Husband, father, friend to Donald, Marsha and Chris and to your extended family at the church. I think that this time spent with family and friends must have a healing effect.

There are still many more things to do to get the house ready for you. The overall disorganization at home is very noticeable this weekend. I finally had time to appreciate the clutter. I missed the annual fall purge and the pre-Christmas kid stuff purge and now it’s almost spring and time to purge again.

Spending more time at home enables me to see this clutter and it is starting to get to me. I want to get a handle on it before you get home. As things are right now, it is not wheelchair friendly or a safe walking environment. I know that Tara will give me resistance … she is such a collector. An organized collector. I will have to find the right motivation for her to purge. Thankfully, Quinn will be a little easier to convince. He would do anything to get you home. I start the process by making a purging plan.

Saturday March 20 – A No Cry Day

2010-03-29T22:38:00.000-03:00

Quinn wakes up with Daddy! He is all smiles. Tara gets up and slips into the big bed. The four of us in the big bed cuddled up it was so nice. I didn’t want it to end. When the clocked ticked past 8am, Tara jumps up and asks if she can call her best friend. As she talks to Madeline, her speech gets faster and faster. She is so excited at the prospect of Madeline getting to see you when she visits later in the day.

After breakfast, you note, “No crying today by 10 am”. While you visit Donald at Cedarstone, I get groceries. You want to make it a routine of going to visit Donald once a week if possible. I think in many ways, the two of you have a lot in common with only 44 years separating you.

The children have their friends over to visit, It is almost like a regular Saturday afternoon full of domestic life. Cooking and planning meals, cleaning the house and settling disputes between children and tidying up after them … It felt great to be home.

Stairs weren’t a big deal really. They are nerve racking to do and they require 100% of our attention. No multitasking while doing the stairs. I won’t even let the children talk to us while you are on the stairs. One mis-step can lead very easily to a fall. A fall can seriously set you back in your recovery. It is difficult for me, a multitasking addict, to stay focused on one thing but it is important.

I have to be your voice of reason and safety. You are usually the cautious one and I’m the risk taker in the family. Being the cautious one is a new role for me and I find it easy to fall into “maybe we can do it” attitude. It’s dangerous thinking. I keep reminding myself what the PT said on Friday. Walk and stairs only when necessary not for recreational demos.

Together we explore your backpack. This is the backpack that you had in the car when you had your stroke. It had the cigarettes in it still. I had thrown in your GPS watch and your rings as well. I put the cigarettes in the garbage. You want to get more but I can’t let you slip now.

It’s a beautiful day and we decide to go outside for a walk about the neighborhood. We meander our way down the street and arrive at Marsha’s house. You give Marsha and her husband, Doug, a complete comedy routine of your experiences in the rehab. The lines were funny and the timing was good. You still have a comedian’s delivery. The stroke didn’t take that away from you.

Later in the day, Harold, our neighbor, visits. Being a fellow stroke survivor and ex-smoker, he can empathize with you. The two of you talk about smoking and the effort it takes to quit. Harold has been smoke free for a while now but he says that it’s really just a matter of taking it a day at a time.

Harold is very involved with the local Stroke club. It is for stroke survivors and helps them overcome their deficits and thrive despite them. He is going in the March of Dimes pledge – Walk and Roll A Thon that takes place April 10 at the Truro Mall. He brought some pledge sheets for you to get sponsors. You will be home that weekend and you want to be involved.

The two of you talk about how a stroke affects people. Harold has a seemingly ‘invisible disability” from the stroke. Anyone looking at him wouldn’t know he had a stroke but the he still has effects of the stroke, which have lingered. The recovery, for him, continues every day. He is an inspiration to you.

By 10 pm you still haven’t cried today.

Quinn happily sleeps with us again

Note to readers: The Walk Roll A Thon in at the Truro Mall from 9 to 11:30 am. Come and see stroke survivors make a difference in their lives and the lives of others. Chris will be there Walking and Rolling.

Friday March 19 - Small Things are the Best Things

2010-03-29T22:37:00.001-03:00

Today was the day that I went to walking school. The PT said that she would show me how to assist you walking and doing stairs. If all goes well, then you get rewarded a cane which means we can go home of the weekend!

I tell you, at breakfast, that I’m a little worried about helping you. Quinn overhears the conversation and pipes up in a little but authoritative voice, “You will help Daddy, one step at a time … just one step at a time.”

At the PT’s walking school, she demonstrates with me walking her as she mimics your gait. She has obviously done this before. A third person watching us from a distance would wonder about our crazy antics. It might have looked like we were applying for a position in the Monty Python’s Flying Circus Ministry of Crazy Walks.

She emphasizes that the walking is strictly for getting from one place to another. She looks at you when she says, “It is not for showing off yet”. The biggest challenge to assisting you walk is to relax and act as a safety not a helper. As you walk, I hold on to your arm sling in the back. Poised and ready to steady you if needed. The other challenge is to concentrate. You don’t track your left foot well. If you don’t effectively move your left foot and not notice, then when you take a step with your right – you lose balance or as the PT says, “You don’t have a leg to stand on.”

Occasionally, as you get stuck with the left foot not moving on cue, I learn to lean you slightly to the right to allow you to take weight off the left so you can move it forward. The timing of this cueing is key to a ‘smooth’ gait. It requires a lot of concentration from both of us. We can not walk and talk at the same time at this stage. I hope that at some point the cueing will be second nature to both of us. But, like dancing, this will take time.

Your PT is a natural teacher. She takes great pleasure at giving Tara and Quinn the tour of the physio pool. She knew that she wanted to be a physiotherapist since she was 15 years old. Now, many years later, she is as enthusiastic as she was when she started her career and it shows and is contagious.

At the end of the PT session you get handed the ‘trophy’ of a quad cane to take home for the weekend! Today you will get to walk through the door of our home. The first time in almost seven months.

Good session with your psychologist today. She gave you some reading material to help your identify with the feelings better. Grey Glasses and belief systems that affect your mood. She tailored the handout to your situation. I can see how actively thinking about this thinking can help you past this stage.

You feel undeserving and inadequate. You are the pessimist by nature about most things in life but you remain are optimistic about running. You talk about running again. When I ask why you seem to have so much optimism for running, you said that you feel that running was the one thing that you could have control of. “I love that line from the song – I don’t go very fast but I go pretty far.”

The chaplain came to see you today. She is a very good listener. Between her listening skills and the psychologist reasoning skills, I think that we are off to a good start for the weekend.

On the drive home, you spot smokers and runners. Thankfully, you saw more runners then smokers. I wonder if this is going to be your new pass time.

On the drive home we talk about where you will sleep. The hospital bed on the main floor or our bed. “In our bed!” Quinn says. Of course he meant yours and my bed, but he has slept on your side of the bed for so long that he thinks of it as his bed too.

This week has been so good for the family. It almost had a normal feel to it. In the morning you would go off to ‘work’ and we would come visit you at work and after go off and do things in Halifax. By today, we had developed a routine and a rhythm. It felt good.

Juanita and I stay up late to put up handrails on the stairs so you can get to the bedroom. After an emergency trip to the hardware store and a trip to Wayne’s workbench for tools, we get finished by 10 pm.

I nervously assist you going down the stairs with Juanita ahead to break your fall. You didn’t fall! So far so good. Once the handrails are complete, We go up the stairs. Still no falls! My confidence is growing.

Quinn is already in our bed. We let Quinn continue his sleep with us in ‘our’ bed. I smile at the thought of Quinn waking up in the morning with him sandwiched between us. I know he will be happy. It is funny how the small things are the best things.

Thursday March 18 – Dancing Together

2010-03-29T20:33:00.000-03:00

We danced in the bathroom today! Your bathroom duties, this morning, required my help as usual. The difference was that I was in bare feet. You had your shoes on to give you better traction. It reminded me of the ballroom dancing lessons we took when we were pregnant with Tara. You picked up on the different footwork patterns pretty quickly. I didn’t and as a result there were many swished toes ... mostly yours. Now, you are getting even and I have to be conscious of where your feet are so I can get my feet out of the way. You have to maneuver your feet about when pivoting to get onto the toilet. This is a special challenge in the apartment’s bathroom with limited space.

Your PT danced with you today too. You started with lots of walking and sitting from different positions. I had to take the children outside for a few minutes to get some fresh air and burn off some steam. When we came back in the PT gym, you and your PT were shuffling about in a circle. Clockwise then counter-clockwise. The two of you looked like you were dancing.

She wanted to demonstrate how it is easier for you the circle counter-clockwise and lead with right foot. This is important to know because that means every time you sit down, you have to think about your approach. At this point not only do you have to think and plan your ‘descent into the chair but you have to communicate or ‘file the flight plan’ with whoever is helping you to land in a chair or bed. This small mindless act that we do normally all the time with little thought, becomes a major production and requires the coordination of a well executed football play.

At lunch you OD’ed on your pills. It was an error. I had all your medications for the week. Five pill at 8 am, two at noon and 5 pm and 5 more plus a liquid at 10 pm. To simplify the week I put your noon pills for the week in a pill vial and kept them in my purse so that we would have them wherever we went. The plan sounded good at the time.

As the children and I were getting ready to leave to go to Tara’s hair appointment, I said as I went to the washroom, “Don’t let me forget to give you your noon medications before we leave.” And I placed the pill vial on the table. I was gone of less then 3 minutes and when I get back to your room, I grab the pill vial to give the pills – they are all gone… all four noon doses gone!

We talked to your nurses and they check with your doctor and the consensus is that you would be tired and you should just rest the rest of the day and skip your therapy sessions. So I leave you to rest and whisk Tara and Quinn away to meet Juanita at the hair salon to get Tara’s hair highlighted and Quinn’s mop of hair tamed.

Tara didn’t want me to see her getting done until it was finished so I hung out with Quinn and busied myself next door at the luggage shop. That’s where I found a one strapper back pack for you with spot for cell phone for you. I think that will make getting about, both in and out of the house a little easier.

While the children were with Juanita, I went back to the NSRC for an appointment with the family psychologist. He planted a seed in my mind. Well meaning friends have planted the same crop in my head too. I don’t know if they will spout. The seed is the concept of ‘me time’. It sounds good in theory and I would be planting the same seed in my friend’s head if they were in a tough situation with family illness, but I can’t see how it will happen. Right now, I am content to call a solid eight hours a night of sleep - Me Time.

There was no OT today but tomorrow, your OT are going to videotape you so you can see how you move. I anticipate that this is going to be an emotional moment. Left neglect, hemiplegia, hemianopsia … the perfect storm of sensory loss. The net result is there is no left.

Wednesday March 17 - A Green Day

2010-03-25T23:45:00.001-03:00

March 17th has been a special day for us. With both of your parent’s families come from Ireland. You were brought up being green. I have no green Irish blood in me but the idea of leprechauns and other Irish magic along with an interesting history has engaged my imagination.

Since the children have been in our lives, we try to do something special on Saint Patrick’s Day each year. A few years ago, you made Irish lamb stew. Last year, I tried my hand at an Irish dinner, which included green milk for the children. The green milk seemed like a good idea at the time but apparently, it didn’t taste so good.

This year we all wore green. Quinn had given Tara a green top for her birthday and I had packed a green top to wear today. You and Quinn didn’t have any green clothes so yesterday we made a trip to the local Zellars and bought green t–shirts for you and Quinn. Quinn quite likes the idea that you are matching today.

We make a minor stir wherever we go because we are all in green. We get lots of comments about the green theme. Oh well, the children like it.

Your PT has plans for you. She wants you for a few more weeks … possibly four. She wants you to manage al sorts of transfers so that you can move safely from spot to spot with little risk of injury. She wants you to learn how the manage, not only stairs where there is a hand rail, but also curbs and other ‘everyday’ minor obstacles.

You have the advantage of being very athletic before your stroke. You used to have great balance. Your balancing skill is somewhat affected but some talent is still there and that has made the transition to stairs and the cane go fairly smoothly. You get a little excited at hearing this. “What about running?” You ask. I have to rein you in and remind you, “You have to walk before you run.”

After PT, the children and I leave you to your lunch and head off to the Maritime Museum of the Atlantic. We check out lighthouses, learn a little Morse code and see model boat builders at work. It’s a whirlwind visit because we have to be back at the NSRC for the psychologist appointment.

In the afternoon, the children hang out with a recreational therapist on the fourth floor while we meet with the couple and family psychologist again. It mostly a ‘checking in’ session. A lot less tears for both of us then the first meeting with him. He notes that we seem better today then before. I have to agree. I don’t want to discount what the psychologist did for us but I think that hanging out like a real family for the last five days was very therapeutic for us.

Dr Mountain says that it’s official – you are staying for another four more weeks the new tentative discharge date is April 22. This is because they feel that they can do a bit more with you. Independent transfers is the goal. This will enable you the actually go to the washroom by yourself. Something that most 45 year olds take for granted. This skill will be quite liberating for you and possibly the start of things to come.

After dinner, you call your mother to wish her a good green St Paddy’s Day. When I talk to her, she sounds tired. Dee Dee has been battling health issues ever since your journey began. It’s a quick call because we called with the cell phone. The children didn’t get to talk to her for long. They both miss their grandmother very much.

Quinn is in tears again at the dinner table. After some coaxing, he said, “I miss Dee Dee”. He said that he was embarrassed to say that was why. You share your feelings about embarrassment with Quinn. You have had a lot of embarrassing things happen to you over the past few months but you have found that no one can make you embarrassed. You wonder aloud if the children are embarrassed to be with you. Quinn and Tara protest loudly to this idea.

They have been counting down the days until they could come to Halifax and visit you. You have no idea how much they miss you. When we are at home and you are in Halifax, they talk about missing you all the time.

Tuesday March 16 – What will be My Meaningful Job?

2010-03-24T22:31:00.001-03:00

Today your PT is back. She meets the children. She is a bit of a kid herself. She immediately notices the devil sticks that Quinn brought to the gym with him. She is drawn to the devil sticks right away. She seizes the opportunity to do a bit of twirling with the sticks.

The children and I get to see you walk, climb stairs and strengthen your legs on the kinetron – a sort of sitting upright stair master. You also practice several transfers from various positions.

Walking requires a lot of concentration. You and your PT have to constantly be aware of where your left foot is. If you try to kick the left foot forward and it doesn’t go and you don’t notice it, you will fall when you try to take the next step with your right foot. As the PT says, “you have to watch carefully because when this happens you don’t have a leg to stand on.”

Lately you have been thinking that I should take a vacation. “Go somewhere by yourself or with the children but leave me here. You should just relax and not have to look after me.” Now you want your PT and I to go on a cruise together! “I’m not really a cruise-type tourist. I would rather go hiking.” Your PT agrees with me.

Last summer, we went for a hike up at Earltown. It was a wonderful day and the air was clear and fresh. The forest floor was covered with flowers. We had a good vigorous walk in the woods. How I long to know that hiking with you and the children is something that we can do together again.

You have different dreams for the future. “Someday I will qualify again for Boston. Then I will be running for all the right reasons.” This sounds a little like another attempt at bargaining but perhaps you are just stating the future as you see it.

While you are with the OT practicing transfers from chair to chair like a rather insane game of musical chairs, we drove out to Dingle Tower. The tower was closed so we went for a walk along the beach. It always amazes me that when you put a child on a beach, even in winter, they will find fun and joy somewhere in the sand. Today was no exception. Tara and Quinn skipped rocks, looked for sea glass and shell treasures and drew in the sand. Within thirty minutes Tara’s pockets were bulging with shells.

As we started back to the NSRC, Tara states that she loves the ocean. “I am going to live by the sea when I grow up.” She said. “Don’t worry, you and Daddy can come visit.

After dinner tonight, we play a game. Jellybean poker. It’s fun playing together. It is really a math game that also teaches the talent of bluffing. You learn a lot about people when you play poker with them.

Quinn is a risk taker of the family. “After all, they are just jellybeans.” He says with a shrug. He is not much of a bluffer but then it’s hard to bluff when you get good cards all the time like he seems to.

Tara is much more reserved with her betting. Not so willing to take a chance on things. In no time she had her jellybeans all organized by colour in the order of the rainbow. Any bets that she did make were carefully colour coordinated.

You were the first one to loose all your jellybeans. I fell shortly after. Tara and Quinn loaned us jellybeans to stay in the game. Quinn cleaned up then proceeded to share his haul of jellybeans with Tara.

I brought the photo album for 2009 with us this week. I thought you might want to see what you had missed. Most of the pictures, taken after your stroke, were of you and the children in various hospital beds. The pictures show you at different stages of your recovery. Pictures showing you in all levels of consciousness. The picture that really caught your eye was the one I took a day after you surgery in the ICU.

Quinn wasn’t sure if he wanted to see you or not. He was worried that you might look scary. I took a picture of you from the non-surgical side so Quinn could see you before actually coming to your bed. You hardly recognized yourself in the picture. I think this is the first time that you really tried to imagine what our lives were like and how frightened we were.

Negative thoughts still circle around you today. You have been searching for something to do that is meaningful when you get home. You ask about working at the animal hospital.

We have worked together before in an animal hospital. That’s how we meet. But, working with animals is a fairly physical job and I don’t see what you would be able to do that is safe. I didn’t have to tell you that … Thank God. You came to that conclusion by yourself. The thought that you couldn’t even do something at the animal hospital made you weep.

I remind you that the most important work that you need to do is to work on your recovery. You still have some very important jobs that only you can do. Be a father, husband, son, brother and friend. This is your meaningful work now.

Monday March 15 - Stroke Surviver to Stroke Thriver

2010-03-24T10:41:00.001-03:00

Today your PT is off and the Swedish student is working with you. She shows Tara and Quinn some of your new tricks. Walking between the parallel bars and walking with a cane between the bars. The children were very impressed and cheered you on with every step. They both felt it was worth the wait to see your performance.

After lunch we all go to see your OT. The wheelchair that he ordered has come and we check it out to see if any changes need to be made. It is a basic chair with no real frills. You suggested that a coffee holder would be a good accessory.

The chair is good fit but some adjustments need to be made and a left arm support must be added. The left arm support is essential for the safety of your arm. Without it your arm would have to be in a sling attached to your chest all the time. The sling is good for transfers but not for the rest on your life. You need to have your arm resting in different positions to preserve the joint integrity as much as possible.

You get into the chair. The chair is new with beautifully smooth wheel bearings. It is noticeably different from the ‘clunker’ that the NSRC has loaned you. “How much does this thing cost?” you ask. The wheelchair supply guy hedges a bit and says it’s about $2500. You ask in your driest voice “If it’s worth that much maybe we cut it up and send it in for the ‘Dollars for Gold’ deal that is advertised on TV?” Then you add, “Isn’t there a program that you get a free wheel chair of every organ that you donate?”

Thankfully, we have insurance and hopefully the wheelchair will be covered. I have found the insurance company a little frustrating so far. They have been very vague about what they will cover and very specific about what they won’t cover. I am still waiting for information about the coverage that you have.

The OT makes a good point. We have to imagine how the chair is going to be used … in the house as well as outside. The use can dictate the quality of the chair. For now we will keep the NSRC chair until the new chair is complete.

You tell the OT that you would gladly give up the use of your left hand if you could have your left leg back again. “That is the bargaining stage of grief.” He says. “Sadly, these are choices that you can’t make.”
After the OT session you and I were to meet with the couples psychologist while Tara and Quinn hang out on the recreational therapy floor. But the plan has to shift quickly. Quinn doesn’t want to be left alone on a different part of the hospital with strangers. He wants to see the ‘feelings doctor’ too.

So, we all pile into his office. We talked about our family, the struggles and challenges that we have had over the last months. I think the children got something out of the session. Tara surprised the psychologist with her insights. He said that she was “Old beyond her years.” She smiled when she heard him say this. She already thinks that she is old beyond her years. I know that she will remind me of this from time to time.

After your therapy sessions, we head out to the grocery store. We were a bit of a spectacle. Not that we were unusual site at the grocery store. In fact we weren’t. I saw at least two other people in wheelchairs. We were the worst wheelchair drivers. Narrow grocery store aisles with aisle displays and wheelchairs don’t mix well with novice wheel chair drivers. I think I will grocery shop solo for a while before I bring ‘helpers’.

The other lesson we learned was that it’s quite hard to fit four people, a wheelchair and a week’s worth of groceries into a Honda Fit. I don’t know how long we will keep the Fit. Once you get home, we will look at other cars that have a little more room in the back and legroom in the front. The Fit is very quite confined in the legroom department. I feel like I’m stuffing you into the car when we load in. Sometimes your left leg doesn’t want to flex because of the clonus or spasms that it has from time to time. This fact makes it very hard to get you into the car.

It appears that your new passion and coping addiction is coffee. To satisfy your craving for Tim Horton’s coffee, I got you Tim Hortons ground coffee … actually decaffeinated ground coffee. There is a coffee brewer at Lenore’s that we can use. One of my goals this week is to see if I can get you onto decaff coffee with a lot less cream in it. I knowledge that you will need something to bridge your addiction gap so that you can cope … I just want to make it as healthy an addiction as possible.

Tonight, I read an article about stroke survivors. It is amazing how language can change your mind set. In the early days of your recovery, I thought of you as a stroke victim. A victim of a random act of God that could not be explained. When one suffers the outcome of a random event, you can not think beyond being a victim.

A few weeks later, when it was obvious that you were making a recovery and you were loosing wires and tubes, I started thinking of you as a stroke survivor. The article I read tonight suggested that the ultimate level of recovery is to be a stroke thriver.

My crystal ball is staring to work again. I am starting to see you as a stroke thriver.

Sunday March 14 – Your Waves Against My Shore

2010-03-23T20:32:00.000-03:00

Sunday started off with the topic of smoking … again. It continued off and on all morning. Finally, when we were with the children waiting for an elevator, I said in a worn-out sarcastic voice while looking at the children, “I will give you a cigarette to smoke after you watched both our children smoke one each first.”

The children quickly jump on this cue. Like most siblings, they are very good at talking at the same time. It is usually very annoying but this moment was special. “Yeah Daddy that’s a good idea because you’ll never get me to smoke!” Their opinions chimed in perfect unison.

That ended this discussion ... for a while.

This weekend you seem to be obsessing on the smoking theme and the ‘what if’s’. This is different from the ‘I don’t deserve to live’ and the ‘I don’t want to be a burden’ obsessions you have had in the past.

Today, you play the ‘what if’ game’ to extremes and it consumes a lot of your emotional energy. The talk is different but it is a welcome change. Oddly, it helped me realize that these negative thoughts are of a different flavour and that your negative thoughts are temporary … they flow into your mind and eventually they flow out … like a wave.

A wave, coming ashore after a storm, has lots of strength and momentum. As it rolls up the shore it loses sped and strength. Finally it recedes only to be replaced by another wave. In your case the waves are worries, dark thoughts and fears. Your waves can come ashore a gentle sandy beach and leave safe water to navigate or it can come to a rocky cliff and crush against the rocks creating a dangerous situation. The destruction of the wave depends on the shoreline.

You are the ocean after a storm and I am the land. Your waves erode my shoreline. I can let you erode my shoreline gently or dangerously. I can not let your cycles of dark thoughts get into my head or I can’t be strong for you and the children. This epiphany has recharged my determination to help you through this. Sometimes, living so close to your dark thoughts swallows me up but with this mindset immunizes me against the contiguousness of your talk.

I have to remember that this is part of your recovery and if I can just ride the waves out – your storm will pass and your thinking will evolve.

Before we left on Friday, I checked the email. A email from Lynn was waiting. She had taken up running recently and the Cobequid 10 km was one of the first races she did. Now she is in a running group that is organized with instructors. This week she has ‘homework’. She has to think about something that inspires her while doing hill training. She wrote about you and your struggle to survive this stroke. I read to you her email and you are touched. You weep.

You want to walk the some of the Cobequid 10 k this year or maybe next year. You may be able to walk some or all of it…after that … who knows. “I had to be patient throughout this ordeal… I’m not terribly good at it.” You certainly have had lots of practice with patience and a lot more to do in the future. The patience and your pre-existing determination will be an asset later.

For our entertainment this afternoon, Quinn does a juggling show with balls and devil sticks while Tara plays ‘The Entertainer’ on the organ. Then Tara performs a dance for us. At the end of their shows, you picked up a devil stick and started to flip it end over end. I told you about the day when you did the same trick while you were at the QE2. You were still rather dazed, at the time, when you stared to flip the stick. End for end. Quinn and Tara were delighted with this display of talent. You don’t remember this at all. This was weeks before you could talk. This was a very pivotal moment for them. This was the moment that they knew that their Daddy was still inside.

Today, you decided to one-up yourself. You got Quinn to give you two of his juggling balls and proceeded to juggle the two balls with your right hand while the three of us cheer you on.

The children and I play a game of ‘find Daddy’s blind spot’. We started with you looking straight ahead at Quinn who was directly in front of you. Then Tara would walk along your side to the left and to the right from behind you.

There was a considerable difference. There is definitely at least 30 degrees of your field of vision is lost. Now that the children know where your blind spot is, there could be some sneakiness going on. Oddly, that thought comforts me, because I am confident that if the children try to take advantage of your blind spot, they only be able to do it once because after that you will be highly motivated in the future to compensate for it. I think if it works … we should call it the ‘Sneaky Kid Therapy’.

Tonight you start again on the cigarette wave again. You want me to get you some. I decide to change my tactic so I share with you my theory of why you chose to tell me that you smoked.

It is a simple theory. You told me because you felt you might need my help. You felt that there might be a day that you would have a hard time resisting the urge. You told me because, subconsciously, you wanted my help during these times. You wanted me to be your keeper and help your resist then urge. You keep asking me for cigarettes because you don’t want to fail. You could go out and find a way to sneak a cigarette behind my back, but you haven’t. You haven’t because you have the will power most of the time and when you don’t … I do. We are a team.

The ‘Good night’ cuddle with the children almost had a Christmas Eve feel to it. “Tomorrow, we will get to see Daddy walk and do stairs for real!” They had seen a video that I made but it doesn’t seem as real as seeing you in person. Quinn and Tara are both all smiles with the thought of tomorrow as they drift off to sleep.

Saturday March 13 - Challenges

2010-03-21T21:48:00.001-03:00

Today was a day that I had been looking forward to all week. I had planned for it and I was right on schedule. That was when the detours started.

Jeff came today to install the banister. This was all part of the plan and things were going well. Then, I thought that I would call you to tell you what time we would get to Halifax so you knew whether to eat your lunch at the hospital. Over the phone you said that you are sicker then ever with the cold. It’s a real cold and you are worried that you are going to get us all sick on the March break. Damn. I survey the children, they don’t care if they get sick. “We are coming anyway.” I said to you.

In the back of my mind, I’m worried that the cold is an excuse. You are pushing us away because of the conflict we are having over smoking.

For Tara’s birthday, Juanita gave her an appointment at the hair salon to get highlights in her hair. Tara was quite excited about this new level of personal adornment. She was going to be with Juanita for the morning and the Juanita and Farley and Tara were going to meet us in Halifax while Quinn and Maddie and I travel ahead.

It didn’t Tara long to come back home because the hair stylist found nits in her hair! Oh gosh the lice thing again! Actually I think my language was worse then that.

I dig out the delousing gear again and I went through her hair, followed by Juanita. Only 6 nits and no adults. All the nits are 4 to 6 inches from the scalp. I am really sure that these are old nits from last fall … not new ones. Tara isn’t upset about the lice suspicion. She is just disappointed that her hair can’t be done. The hair salon has a policy about finding lice … no services rendered with lice. I am upset for Tara, but I force myself to understand the policy.

The real loss is the extra two hours out of a precious Saturday to sort all this out.

Thank God, it’s a beautiful day and we have the whole week with you. We will make the best of it ... even with the occasional infertile old nit. To be sure that we don’t risk spreading anything, I lug to Halifax all our own bedding.

When we get to Halifax, I ask you, flat out, if you are upset with me for refusing to get you cigarettes. The Promise is still fresh in my memory. It must have been in your mind too because you said, “The promise doesn’t include killing myself with cigarettes.” Appreciating the loophole, I said that anything that is self-inflicted is included in the promise. After talking with the children, you consent to coming to Lenore’s.

You read a chapter in your new running book about a long distance runner! Reading is a challenge for you with the left neglect. Finding the left margin is a challenge with every line of text. So to read a chapter … is a big accomplishment. Now you talk about the ‘ultimate walk’. “You’ll know I’ve gone because all the bananas and apples will be gone with me. I’ll put them in a back pack and I’ll call you if I make it to Baddeck.”

Today, you faced another challenge and you succeeded. You had the chance to smoke – fellow patient was going to give you a cigarette – You asked her for one and she told you she was going outside to smoke in 10 minutes. Patience has never been your strong suit … waiting the 10 minutes was all you needed to get control of yourself again. You tell the children and I about this challenge and we are very proud of you.

Yesterday, I thought about you asking for cigarettes. I had thought of bringing you just one cigarette. A single symbolic cigarette. A cigarette in a container that is covered with many layers of duct tape – the handy man’s secret weapon can also be the frustrated wife’s secret weapon. I figured it would be the “in case of emergency break glass” symbol. There would be so much duct tape on the box that by the time you got it all off … with one hand … the urge will pass.

I couldn’t do that to you. What if that allowed you to smoke again? And if it didn’t let you smoke again, then it seems like a cruel joke to put you through. I told you about my idea. You said “Oh, like the ‘In case of emergency – break the glass box’?” You smiled at the thought but you didn’t ask me to do it.

Well, it didn’t matter. It stopped that discussion dead in it’s tracks … at least I thought it did.

“I can’t say that I’m never going to smoke, I was closer other days then I was today to smoke. Today, it was almost too easy to do.”

You bought your first lottery tickets since your stroke. The thought had briefly crossed my mind that I should keep buying your tickets when you were so ill in the hospital. I had found a carefully cared for stash of tickets along with the hidden cigarettes in your car.

I knew you bought lottery tickets. After your gambling problems came to light with VLT’s we had discussed if lottery tickets were part of the same monster. We both felt that playing the lottery was just a fun diversion and you would only buy a few tickets a week. I never discouraged you from this practice. I figured everyone needs a little fun … if that was fun to you … I didn’t have to understand it. As long it was a few tickets only and for fun then I never objected.

Part of me knew that you would have been upset if your numbers ‘came up’ and your hadn’t bought the tickets. Rationally, I knew the odds of that were far slimmer then surviving a catastrophic stroke. I figured the ‘luck gods’ had already smiled on you and buying tickets was just a waste of time and energy … and money. So I didn’t.

At dinner, We are talking again about the stroke and life and smoking and suddenly Quinn makes a face and starts to cry. He doesn’t get to tug an ear lobe because we see him melt down before our eyes. I reach out and hug him. When he composes himself, he said that he worries that both you and I will die and he is scared.

I am so glad we are getting some family counseling this week.

In the evening, we watched a movie. You and I were on the sofa. I went to the kitchen for a moment to get a drink and when I got back you had slipped off the sofa. You were almost on the floor and you were unable to get yourself back up. I tried to help but I wasn’t quite strong enough. Thankfully, Lenore’s furniture includes a low footstool. It worked beautifully. I could help you get on the stool and then like you were sliding your butt up the stairs, one at a time, you managed to slide up to the sofa.

This incident illustrated to both of us how challenging living at home is going to be. I am going to have to learn some tricks to get you out of situations like this.

Friday March 12 – Don’t Cave to the Craving

2010-03-13T08:47:00.002-04:00

Friday March 12 – Don’t Cave to the Craving

The couple and family psychologist called to check in with me about our session on Wednesday. I felt it was a good exercise. I want anything I can get to help you through these times. When I help you, I help myself and the children. Our next session is next Monday.

The children went to visit you with Juanita while I worked today. When I picked up the children from Juanita’s, Quinn said that the visit was good and he wants to spend the whole week in Halifax. He said, with a little pride, “Daddy didn’t cry or swear at all for the whole visit!” I was a somewhat surprised because I didn’t think that you swore much. I think Quinn’s ‘swear word’ dictionary includes a lot of words that we just think of as everyday words.

Tara was less impressed with her visit. She felt that you were a hard on her and overly firm. She feels a little hurt. I think that the family counseling is coming at an important time.

Smoking was the main topic of our phone call tonight. You start the phone call by asking me if I would do you a favor. “Sure” I answer hesitatingly. “Will you bring me some cigarettes?” Oh gosh, here we go. I feel that I have to be strong for you. It’s easy for me to resist your urge to smoke but it isn’t easy to resist pleasing you.

I realize as we talk that you have a new topic to obsess on. Smoking. The chemical hold that smoking had on you must have let go a long time ago but you are in an emotional place now that you feel you need to reach for a cigarette for comfort.

I suggest my theory to you. I point out that a few months ago, you obsessed about having daily productive visits to the toilet. You had a streak that you kept careful track of. You don’t obsess about that anymore. It was a passing phase … a part of recovery I hope.

This is a phase also. I suggest it will pass. I caution you that if you cave to the obsession of smoking now, then it will never pass because there is no such thing as one cigarette. You will be a slave to nicotine and you will hate yourself for caving to the craving.

“Be Strong” I say at the end of the phone call, “And have hope.”

Tonight, March break begins. We will be in Halifax all week and we hope that you will be able to attend your sessions in the NSRC during the day and stay with us at night, This next week will be a bit of a trial run for real life at home.

With good weather scheduled all week, I am looking forward to this strange type of vacation.

Thursday March 11 - Quinn Misses You

2010-03-13T08:47:00.001-04:00

No school today so the children hang out with Maddie and Farley while I work. It’s a busy day but the day slides by smoothly. We are starting to pack and plan for our week in Halifax. The children are very excited about this ‘vacation’ together.
.
At bedtime, Quinn asks about his gymnastics next week. He wanted to call his coach and tell her that he was going to see you. “I want to visit Daddy more then going to gymnastics.” He misses you so much.

Your were away from your phone at the children’s bedtime and when I tried to call you back you line was busy both times. I catch up on mail and writing and planning for the week in Hailfax and go to bed early.

Wednesday March 10 – A New Possible Discharge Date.

2010-03-13T08:46:00.001-04:00

Today was a crazy day. I hadn’t planned on coming to Halifax until the weekend but I wanted to see your PT, social worker and another psychologist. To fit it all in was difficult but I did it. And I’m glad I made the effort because, tonight, I feel a lot better about the plan to get you home.

You have the beginnings of a sore throat today. You haven’t had a sore throat since before your stroke. You used to complain about a sore throat all the time. Of course, now I realize that you had a sore throat because of your smoking. How could I have been so naive? When you mention your sore throat, I swallow hard and ask, “Did you smoke yesterday or today?”

Your answer is ‘No”. But you are having the urge to smoke and it’s getting stronger. I tell you that you have to be strong because one cigarette leads to two, two to four and four to more ... It’s a slippery slope.

I got to see you do stairs today with your PT! She said that stairs are easier then walking. A handrail is more reliable then a cane. The system is beautifully simple. You lead with your good leg up the stairs and lead with you bad leg going down the stairs. The PT said, “ There is a ditty to remember it … The good up to heaven and the bad go … you know where.” She is far too sweet a person to feel comfortable saying the actual word, hell.

She reminded you and advised me of the ‘evil voice’ that lives in a stroke survivor’s head. The voice that will ask you to do risky things. She believes that you heard that voice on Sunday. The voice that said you wanted to practice walking. The voice that lead to the fall. I wonder if the evil voice comes from … you know where.

I ask your PT what the odds are that you will need stair lifts in the house. She thinks the odds are pretty good that you won’t! You want to know if you would be able to walk to the school to pickup the children. She thinks that the best that you can have for now is to be able to walk with assistance outdoors. “What I am hoping beyond hope is that you will be able to walk alone indoors.” She said. “My more realistic hope is that you will be able to transfer independently from the wheelchair so that once you get to a level you can transfer to another chair, toilet etc.”

At the end of the session, the PT suggests that she would like you to stay a little longer then March 25 (Your scheduled discharge date) “A couple more weeks more then the current discharge date” She says. “What!” You respond. You think that you are doing poorly and the ‘teacher’ wants to ‘keep you after school.’ The PT quickly assures you that you are doing well and that she believes there is more that can be done! The second extension is a good thing … not a bad thing. You are still not pleased. “I want to be home for the Boston Marathon, and the beginning of baseball season!”

Tonight I checked the dates. The Angels home opener is April 5, you would get home approximately April 8 and the Boston Marathon is April 19. You don’t see it but you are making progress. You will be home for many important dates.

After the physio session, we meet with the social worker (SW) and the continuing care coordinator (CCC). Together we formulate a plan for having you at home. Homecare NS will be able to provide some care as long as it is personal care or therapy driven. Yeh! It seems that the CCC and I are on the same page. At a later date we can apply for self managed care and hire a therapy assistant ourselves.

We loosely discuss schedules and responsibilities and how to hire someone. The CCC makes a good point when you lament that you don’t want to be babysat. She is not coordinating babysitting. She is coordinating therapy … ‘home based’ therapy. She is planning for your graduation from the NSRC to home therapies. That is something to rejoice over not regret. “We are trying to maximize what your independence will be.” She says.

The SW has found programs that you can be involved with like the stroke club and the VON day program. Between therapies at home and going to PT appointments. There are also other programs in Halifax that you can be involved in. We want to keep you engaged in your therapy and in life. You fear that you will end up a vegetable in front of a TV.

After lunch we meet with your new OT. Unfortunately, he is only temporary until another OT starts in two weeks. He, hopefully, has a loaner wheel chair coming soon and you will get to test ride it first to make sure that it will work for you before a wheel chair is bought.

Later in the afternoon, we meet with a couple and family psychologist. He is a soft-spoken slow talker, much like you. We both find him easy to open up to and as our discussion unfolds, several epiphanies occur to me.

The biggest epiphany is that you are scared. You aren’t really suicidal … you are just scared and that’s OK because I’m scared too. This situation is completely foreign to us and it will take time for both of us to adjust to it. Things will get better and thankfully, we have the luxury of time. Something some people don’t have as much or any hope and no time to adjust to their health problems.

My new strategy for your dark thoughts is to reframe them into words that they really mean …”I’m scared.” Maybe that action will take the discussion to a new level.

Tonight is parent - teacher night. Quinn’s teacher is pleased with his progress but sees room for more reading in his life. Pathetically sadly for me is that his French is at a level that is beyond my skills. Language has never been a strong suit with me, I have enough trouble with the English language. I had hoped that when the children started French immersion, I would be able to learn by their side. I have increased my vocabulary but I worry that I will lead him astray with his French phonetics. He needs you and your guidance in reading French.

This is a special parent role that is waiting specially for you.

Tuesday March 9 - Hope whispers, "Try it one more time."

2010-03-11T22:54:00.000-04:00

Jeff came by the house tonight to size up the job that we need to do on the staircase going from the dining area to the living room. It’s not a big job and it might be the only house construction job that we need to do except install more hand rails and grab bars.

I am relieved that he will be able to do it. That removes a small load. Not I have to wait to figure out the bigger part of your needs. Stair lifts and homecare. At least the stair lifts are a one-time expense but the home care will be on going and we will have to budget carefully for this.

Lately, you have been distressed at the mention of the phrase ’24 hour supervision’. You don’t want to be baby-sat and I don’t want a glorified housekeeper. We need some one or a couple of ‘some ones’ who are able to work with you while I’m at work, getting kids, groceries etc. We need them to help you with your therapies not make meals or do house cleaning. We need therapy assistants not baby sitters.

Tomorrow I hope to find out what the plan for home care is.

My call to you is brief. You were on the phone earlier and I’m on call tonight. “Who were you talking to?” I asked. “Kevin! He is going to walk with me in the Cobequid 10 km Race in August!” The thought of this choked me up, I manage to spit out the words “That would be amazing.”

I am ashamed to say that my realistic mind kicked into gear and made me say cautiously: “If not the race this year, then maybe maybe next year. We have a long way to go before you can do 10 km.” I didn’t want failure to crush you. But iI smile at the thought of this accomplishment. It would be amazing if you could walk in the same race that you ran in last year. Even if it takes you a long time. The taste of victory would be so sweet.

This is the stuff that dreams are made of.

Tomorrow, Quinn is off with his class to the Sugar Moon Farm, a maple sugar operation. He has been counting the days for a few weeks now. Tonight an email from Quinn’s teacher arrives to remind the parents of the event – as if our children . At the bottom of Quinn’ teacher’s email was the phrase:

"When the world says, "Give up," Hope whispers, "Try it one more time."
~Author Unknown

I am continuously amazed how the ‘signs’ keep coming. I seem to find little nuggets of hope in all sorts of unsuspecting places.

I have a feeling that I’m going to be using this quote a lot in the future.

Monday March 8 – Positive Affirmations

2010-03-11T22:53:00.000-04:00

You met your new OT today. You were stuck in a ‘worst case scenario’ mood today. You asked your new OT what would happen if you didn’t improve at the NSRC. He mentioned that a long-term care facility would be an option. You could live there. I was appalled. You would never reach your full potential of recovery in a long-term care facility. It would merely be a storage place for you until you die.

I don’t know why he even humored your query. Going along with your worst-case scenario thoughts offered no benefit to you. If his intent was to scare you into getting with the program, he failed. He just handed you another way to get out of our family and not be a ‘burden’ because that is the way your brain thinks right now.

I wish that the medical community would think before they share their thoughts with you. There should be no place for negative thoughts in a rehab facility. I understand that offering practical and safety-first ideas are important but they should keep their negative opinions to themselves or at least share them with your family first before dumping them
on you.

I blame the system not the individual for this slip up. Your new OT has no first hand experience with you. If only there was better continuity of care for you. In your stay at the NSRC, you have had two rehab doctors, two different residents and now two different OTs. Only your PT remains the same from the day you got into the NSRC. All these changes in less then eight weeks stay at the NSRC. This seems overly stressful for any patient, let alone someone with a brain injury that has difficulty processing things.

Chris and Terry came to visit you today. Chris G retires from teaching next year. You suggested that you are retired too. “Retired at 45 years.” You said. “No you aren’t retired … you just changed jobs.” I replied. “This is the biggest and most important job you have ever had.”

We talk about Quinn and his passion for gymnastics. I question the sacrifices we have made for his participation. Monday and Wednesdays are nightmarish to get through, largely because Quinn is at gymnastics for three hours after school. It is really hard to get through the evening and yet, get him fed and to bed on time.

You expressed your parental opinion. As always, you look at the big picture of what gymnastics does for Quinn. I know that you are right. If it helps him find and fulfill a passion in his life then it is worth a little sacrifice. The other day, when I was a little frustrated with the crazy Wednesday evening schedule, I expressed to Quinn doubt about whether he should do gymnastics again next year. He was indignant that he should and must do gymnastics next year.

You don’t realize it, but you are still a passionate advocate for our children. That is a very important parental role.

Remembering the positive affirmations you wrote on Tara’s birthday card, I thought that you needed to hear some positive affirmations too.

“I believe in you.” I said at the end of the phone call. “You have to have Hope.”

Sunday March 7 – The Giant Crossword Puzzle.

2010-03-11T22:49:00.002-04:00

This morning you announce that you want to tattoo the word ‘’Burden’ on your arm. How I have come to hate that word. I certainly don’t want that word to be a self-fulfilling prophecy.

I did’t want to hear that talk first thing in the morning. Last night I had promised you that I would get you some Tim’s coffee in the morning. I escape your ‘burden rant’ to fulfill my promise while Fran and the children hang out with you.

When I get back you are disappointed that I didn’t get you a 4X4 and doughnuts. We have a big conversation about impulses and control. I know you want comfort food. I do too. This is a hard time for you and comfort food looks good, but too much caffeine, cholesterol or calories and any nicotine are not doing you any favors. These were the crutches that you used to cope.

There is a fine line between being your warden and preventing you from getting these things, and being your partner and helping you heal.

Saying no to the nicotine, caffeine, cholesterol and calories means that you can say yes to you recovery. This is a hard choice but in my mind it is a no-brainer choice.

Fran gives you some emotional support while I stand my ground about the cream in the coffee. I know there so few things that you can control. I point out that you can either allow the impulses control you or you can control the impulses.

Both Fran and I can relate to your need to satisfy impulses. Food is a big comfort to us. You were my warden and Fran says her boys are hers. We all need a warden and a partner in our day to day struggles. It’s part of the human condition.

One of your presents to Tara was the video footage of you walking with a cane. I played the video for the children and Fran. The children are very impressed with the progress you have made. During March break – I hope that they can see you in action first hand.

You really wanted to practice walking, like you had been doing with your PT all week. You persuaded me to try … against my better judgement. You tried to walk with me holding your right arm. A small miscalculation in footing made you fall. Thankfully it was a soft landing and I was able to get you back into your chair easily and safely.

You were really shook up and I should have never allowed you to try something like this. I have learned the lesson. I won’t let this happen again.

The other present from you to Tara was a card with some wonderful parental positive affirmations on it. This is a card that I know that she will cherish for years.

Later in the day you have a little chat with Quinn about the gymnastics meet yesterday. You tell him how proud you were of him. You say, “You are a hard worker and you are not a quitter. When you get bigger and stronger … Look out!”

More positive affirmations for Quinn. When are you going to be able to give yourself some positive affirmations.

A young lady who you befriended at the NSRC gave you a poem. She had a stroke too. She has graduated from the inpatient to the outpatient list. The poem is entitled ‘Don’t Quit’. As you read it, I recognized it. It was the poem that someone had posted to the blog: http://www.thedontquitpoem.com/homePage.htm

Our time together seems to go by far too fast and yet today,I am somewhat relieved at the end of the day that I can move onto other things. It’s as if I need a break. A break from countering your negative talk. A rest from always trying to find the bright side. At the end of the day … I still have energy but I need to redirect it.

This whole thing feels like a giant crossword puzzle. I can get ‘1 across’ easily but ‘2 across’ is harder and ‘3 across’ is just a wild guess. So to prove ‘3 across’, I have to look at the ‘down’ clues. That works of a while but then I get stuck on them.

I keep moving from the across approach to down approach. I find small solutions that seem to work or at least show me that I’m on the right track. I still don’t get to see the whole crossword puzzle solved but thank God there are different tacks that I can take at different times to help find solutions.

Saturday March 6 – Yes to Ribbons and No to Negative Thoughts

2010-03-10T21:53:00.000-04:00

We have to get up early to get Quinn to the gymnastic meet. I worried, needlessly, that I wouldn’t be able to get you and the children up and dressed, fed and out of the apartment by 8 AM. But I did it! Actually it was 8:03 when we left but I still felt pretty good about it.

We get to the Alta Gym exactly on time. Quinn is whisked off for warm up exercises. I maneuver your chair through the crowd and find a spot where most of the gym is to your right, so you won’t miss much. As we get settled, you notice out of the corner of your right eye another parent. “Isn’t that Sam’s Mum?” you ask. Sam was on Quinn team last year. He and his family moved away last year. Sam’s mother was accepted to veterinary college in PEI and started to study veterinary medicine this past September.

I had met her once before, but I couldn’t remember what she looked like or her given name. I just knew her as ‘Sam’s Mum’. We spotted Sam doing warm up exercises. “She must be Sam’s Mum. Go over and say Hi.” You demand “I would but I wouldn’t be able to get the wheelchair there.” “What if she is not Sam’s Mum – I’d be embarrassed.” You refuse to let me cave and continue to coax me to go. To get you to shut up … I humor you. You were right. She is Sam’s Mum.

Sam’s Mum, Lisa, asked almost immediately about you. I said “See for yourself – we broke him out of the hospital for the weekend.” As we talk, it turns out that Lisa and I have more in common then a shared love of the veterinary medicine and sons who love gymnastics. It turns out that Lisa’s husband, Wayne, suffered from a severe brain injury five years ago. He was in a motorcycle accident. A truck ran into him. He was in very serious condition for a long time and in a coma for six weeks.

During the long days and nights while Wayne lay there fighting for his future, Lisa stood as a guardian over him. She said that she would not allow anyone near Wayne that did not have a positive attitude. She felt that this was a big reason for their survival. She spoke passionately about her experience.

Positive thoughts are instrumental to a positive outcome.

At the time Sam was five years old and Mathew was a mere four months. I can’t even imagine how strong this woman, who stood before me, must be. I am in awe. She shrugs her shoulders and says, “You just do it.”

Wayne is with his family at the meet. Lisa introduces him to you and the two of you talk. He shakes his head and says, “The wheel chair brings back memories… wheelchair to walker, walker to cane.” Now he is walking without anything. He has to be careful on stairs but he can do them. He is even thinking about going back to school and doing another degree.

You are in awe of him.

Quinn had a fun at the meet. You played the over protective parent … angry with the judges for not seeing your son’s brilliance. No ribbons this year. We decide, along with Quinn and Tara, that the best ribbons are the ones you give yourself. They are the ribbons that mean the most.

Quinn is happy with his performance … even without real ribbons … that is what counts.

The birthday money that Tara got was sitting heavy in her pocket. She needed to spend it. You and I had a good parental talk about the money. Your Mum was generous with the birthday money this year and it seems like a lot of money ... even to a ten-year-old. Every year, to date, you have taken birthday money and put it in her savings account. “This year should be different.” You say. “It’s not every year that you turn 10.” Tara is pleased with this decree.

While at the meet, I rack my brains trying to think of where Tara could spend her money in a fun, yet responsible way. Since we are in Halifax, I wanted to think of something that is not available in Truro. Then it came to me. ‘Michael’s Craft Store’. Last year while Quinn was at the same meet, we went to Michael’s to hunt for glow-in-the-dark sticks and paint for your Tidal Boar Runners team and the Cabot Trail Relay.

The four of us spent a long time roaming about the store with ideas bouncing around in our heads of the unique projects that we could do. After a few hours and a few dollars we emerged with bags of treasures.

When we got to Michael’s, Tara eyes widened … she made a ‘bead’ line for the bead section. You were tried, and wanted to wait in the car. I was disappointed, I had hoped that this trip to Michael’s might spark an interest that you would consider a hobby.

You are not ready for this idea yet.

It didn’t take long for Tara to load up on beads. I reminded her about her birthday budget. The bead fever caught on, Quinn spotted a bead kit complete with tools. He knows to the penny, how much money he has in his wallet. He checked out the price and whispered to me, “I want to buy this, I have enough money, but will you carry it?” Then in a quieter whisper he said, “I don’t want anyone to see me buy it … it’s too girly.”

At the checkout, we were one of those families that no one wants to get stuck behind in line. Tara was over budget, and because the prices weren’t on the beads they each had to be scanned again to figure out how to downsize the order. Finally, she was under budget by four dollars! She was quite proud of herself.

Fran meets us back at the apartment. She is in town for the weekend. We celebrate Tara’s birthday dinner. Beef tacos and chocolate mousse - as requested by Tara. At dinner I asked Tara what her top three memories were for the first decade of her life. She didn’t even have to think, She said without hesitation, “Trip to Boston, the moment when Mummy came to us and said that Daddy was going to die and be an organ donor and the day that Quinn was born.”

After dinner, you and I talk. You worry about dragging the children down with you emotionally. As parents, we had hoped to inspire our children but the fact is that our children are continually inspiring us.

“Past, present and future, I am scared of it all.” I tell you to stop thinking about the past and start thinking about the future, because hope only lives in the future. You have to look forward to the hope. I remind you that we have been through the whole range of emotions. We went from NO HOPE to a new level of hope. As one hope is realized, a new one hope forms and slowly enters our lives. Every realized hope is like a ribbon. A sign of accomplishment.

Your dark negative thoughts make me think about Lisa and her resolve to not let negative thoughts entry her husband’s inner sanctum. How can I protect you … from you?

You are alive! That deserves a ribbon. I know that you don’t feel hope now … but you will.

Friday March 5 – A Family Weekend

2010-03-09T22:52:00.001-04:00

I talked with the family psychologist this morning. We have an appointment set for next week. You and I and the psychologist. I hope is that we can lay the groundwork to help you realize your abilities, as a parent. These abilities are still very much intact, they are just laying below the surface and you have to tap into them and believe in yourself.

This is going to be very important. Because the sense of failure that you have about parenting, affects the children too. Like any mother, I want to protect them and yet allow their influence help you heal. This will be a delicate balancing act that I don’t know if I’m capable of.

You didn’t get to see your psychologist today. It shows. You are not it a good place emotionally when we finally get to the NSRC. I thought to myself, this is going to be a long hard weekend.

Thank God we have activities planned to help keep you engaged in life rather then let you slip into despair. Between, Quinn’s gymnastic meet, Tara’s birthday and Fran visiting, I think we can keep your emotions on the positive side.

Thursday March 4 – The Promise

2010-03-08T21:09:00.000-04:00

I knew it would be a ‘snow day’ before I even opened my eyes. Why? It certainly wasn’t because of the vast amount of snow outside - because we did not even get a flake. It wasn’t the radio that tipped me off because I was woken up before the radio even turned on.

It was because of Quinn. Quinn, the sleepy head in the family, was awake and ready to go by 6:45am. Tara was right on his heals ... Why do they do this to me? If it was a school day Quinn would be hibernating like a bear and Tara would be ‘bearly’ up.

Since we didn’t have to get to school, we called you. You and the children had a great morning chat. Tara plays some piano over the phone followed by the two of them playing you a duet ... ‘Heart and Soul’. Tara tells you all about the science fair that she wants to do over the next few weeks.

She is very excited about it.

Shortly after Quinn awoke, he felt sad. He knew why. When he realized that it was a snow day but you weren’t here to enjoy it with them, he felt sad. He misses you. He pats Himmy as he talks to you. Quinn tells you all about the class trip to the maple sugar farm next week.

He is very excited about it.

You tell me about your experience with the treadmill. They had you in a safety harness of some sort that would catch you if you fell. You walked while holding onto the frame with your right hand. The pace was slow but you did it with your PT. It went great and you felt good. You can picture doing this for a long time.

You are very excited about this. I am excited about this.

You were not very excited about an experience you had last night. The night nurse didn’t want you to have too much coffee before bed … you were on your third cup! Your nurse recognizes that caffeine and sleeping pills don’t make good bed partners. This combination is complicated by the predictable outcome of needing to go to the bathroom in the middle of the night.

You are getting tired of being told what you can and can not do.

Today, I met with a local psychologist who I have met with before a handful of times over the years. I was getting tired of waiting to get help through the NSRC. About three weeks ago, I decided that I needed take charge of the situation and seek my own help. It seemed that everything that I did to help you out of your despair seems to be temporary or make things worse. I needed help.

She was an immense help. She helps me figure out ways to reframe what you say so that you can see that is not helping your recovery. She talks about your roles within the family and how you can contribute to our family’s wellbeing. She even shares with me ideas about the children. How to protect them from your dark thoughts and odd reactions.

The children have rarely seen you frustrated at anything. Now they see your frustration level rise all the time. These new reactions of yours are very normal considering the situation but they need to be put in context for the children so they know that the frustration is about you and your recovery, not about them.

Ironically, a counselor at the NSRC called today to offer some family counseling. I think that it would be worthwhile to do and with March break coming up the timing is perfect.

While Tara is waiting for Quinn’s piano lessons to finish, we walk about you and your left neglect and how frustrating it must be for you. I didn’t get very far with the concepts. I can see that this is a conversation that will have to unfold in parts. Her logical mind will understand things better if I can let her figure out the issues that you have.

With March break coming up and us living in Halifax during the week and getting to see more of you, I hope that we can unlock some of the mysteries about your new self to the children.

I tried calling you but the line was busy. Just as I was going to call again, Marianne called. She had just been talking to you and the things you said scared her. Your dark talk is extending out from family to friends.

I call you right back. It’s a bad call … the worst call yet. You are broken emotionally. I can see no threads of hope to pull on. I can see nothing but tears. You are so distressed that you say you don’t want to talk! This is a first … you are shutting me out.

Ironically, just this afternoon, the psychologist had said that truly depressed people push their support away. I was rallied by that thought because up to this minute, you had reached out every time you were in pain. But now you are withdrawing. I was scared. You hang up on me. I was really scared.

The thing that sent you off the deep end was a conversation you had with your PT. She said that ‘24 hour supervision’ was going to be a reality. Your independence snatched away. This is not new news to you but you heard it this time with a new level of understanding. It has cut you down to nothing. “I’m going to need to be babysat.” I said between sobs.

Thankfully, the children were in bed asleep. I wail in despair and cry – I’m out of control. Then the phone rang … I thought that it might be you. It’s Fran. I take a few deep breaths and try to hold it together. I last for half the time it takes to say ‘Hello’. She comforts me and tries to understand what I’m saying.

As I attempt to talk with Fran, the computer screen goes into screen saver mode. It flashes a mixture of pictures taken over the past year. Pictures of you at the climax of your life … at Boston and doing active things with the children and pictures of you nearest death in a hospital bed in the ICU. These pictures are a painful reminder of the past year and what it held for us.
Fran lends a listening ear to my worries and fears and allows me to talk things out. For me talking or writing out my worries helps me see them in a better prospective. I felt a little better as Fran and I end our phone call.

I collected myself. My peptalk to myself went like this: ‘This is not new news – Chris is not worse physically – he is getting better physically every day – if we can just get through this then he will find happiness on the other side. If he is happy we will be all right.’

I called you back with these thoughts in my head. We talk and we share. You start to talk about death again. “I want to come home this weekend … I just want to come home one more time …” I don’t let you finish the sentence.

As we talk, I realize that you feel so powerless that the only thing you think that you can control is your life …or death. You know that if you talk about death before you do something desperate than I will stop you. You tell me that you don’t want me to hate you if all I find is a note.

I pray, God, Please give me the strength to know what to say to this.

I didn’t know what to do. I decide to empower you and yet put limits on you. You have always been a man of your word. When you say you’ll do something … nothing will stop you until it’s done. Your word has always been very important to you so I ask you to promise me something.

“Promise me that you will wait at least one full year after you come home before you try anything like that. I know that with time you will feel better. After that year I may ask for an extension but if you can promise me that you will stick this life out for a full year then I promise not to hate you ever.”

You agree to this. You didn’t like the loop hole of the renewal possibility in one year but you agree. I said from now on we will just refer to this as ‘The Promise.’ You agree.

Wednesday March 3 - Loss Fulfills Hope

2010-03-04T23:25:00.000-04:00

At 9 am the local OT along with a gentleman from Lawton’s and his student came to the house to discuss ‘the plan’. This is a bit of a challenge since we don’t know exactly what we have to prepare for. Every week and in fact every day ‘the plan’ is a little different. Walk a little … walk a lot, not able to do stairs at all …. able to do all stairs. There are so many outcomes – it makes it hard to plan.

We decide to identify all the potential things that you might need but we will wait until the last minute to find out which we will need. This mostly pertains to the stair lift and the ramp. After that we identify things that can be rented since their use may be temporary or adjusted once you get home. Finally we identify the things that need to be done regardless of how you are when you come home. I can get started on these things right away.

We had a good visit with lots of experienced ideas floating about. The attitude was safety first with a healthy doses of ‘enabling independence’ and ‘optimism’. I felt good when they left. Now I just have to wait for the projected costs and figure out how to budget for it. On the surface, it seems that our health insurance through the church doesn’t cover much. The OT feels that there maybe some things that she can do to help.

The OT asked how you were doing. “He is doing well with the walking and the possibility of doing stairs, but it’s hard to celebrate these successes when he surrounds himself with bad thoughts. Mental health is the most important part of getting well.”

Today an odd thing happened to me at work. I was in an appointment with a couple and their dog. The Mr. gets a text message on his phone and looks at his wife and says: “Rosie just got her kidney.” By the wife’s expression, I knew that this was a very good thing. I figured that Rosie must be a friend who needed a kidney badly. Then the husband says to me that his wife got a new kidney last year. She had been waiting for a long time.

This sixty seconds of dialogue transported me back to six months ago. To the time that you were almost an organ donor. Even now, I can’t verbalize my thoughts on the subject. Your kidneys almost went to other people who were holding on to their form of hope. Having lived on the one side of the organ donor decision, it felt very odd to witness other people live in the other side.

Donating organs is a case where one person’s loss fulfills another person’s hope. I know you would have been proud to be an organ donor. But I still feel numb on the subject.

I couldn’t get through to you tonight, first no answer then the line was busy. Then it was after 10 pm and you can’t call to patients. I called your Mum instead and we had a good talk about your progress. It will be a while before your parents can come to visit.

With your Mum still recovering from multiple surgeries, she needs to mend. Hopefully this summer, they can get here for a visit. Hopefully you will be settled in your new way of life. You will find your old roles and rework them a little to be your new roles.

The summer should be a better time. By then we should be able to acknowledge all the losses. Maybe then your losses will find a way to fulfill our hope.

Tuesday March 2 – Darkness and Hope

2010-03-03T23:52:00.001-04:00

I feel your dark feelings. For six months, I have been living with Hope by my side. Hope has been like an invisible friend … you can’t see her or touch her but you feel comfort from her presence in your life. Now I am finding it hard to even feel hope. How can anyone feel hope when they are depressed. You feel hopeless and there are moments that I am starting to feel hopeless too.

My rational mind is appalled at my thinking. How can I not see hope when I can see you walk with a cane? The fact is … even a physically healthy person can not be hopeful without their mental and emotional health. A person’s mental state trumps everything else.

I am desperate to get help to you. I can’t offer any more help myself. Nothing that I have done has helped you. On my walk to work with Annie, I decide to call your NSRC doctor and found out about the psychologist consult. To date, you are sure you haven’t seen a psychologist, only a social worker.

Dr. Mendez came to visit you today. You said he was very nice and said that you had to keep up the hope. The future will hold things that might help you. No specifics, just vague promises of hope. His area of research in neurology is stem cell therapies. It’s still early. Too early to speculate what can be done. But we can still hope.

This afternoon, Your NSRC doctor returned my call to her. I told her that your emotional state is getting worse. I feel that it is starting to affect me and the children. I asked about the seemingly phantom psychologist. “Oh she has seen him twice now.” Your doctor says.

I told her that I don’t believe that you know who your psychologist is because you told me that you hadn’t seen a psychologist yet. Your memory is good. You know the names and positions of all the key team members as well as most of the nursing staff who come and go, depending on the shift. Yet for some reason you didn’t know who the psychologist was. Your doctor promises to ensure that you understand who your psychologist is.

I am meeting with my own psychologist on Thursday to try and sort through the crap that is going on in my head. I hope to learn some strategies from her to help you through the dark times. Your NSRC doctor said that thoughts that circle around and around are a common result for brain injured people. She felt that we could learn ways to help you ‘re-frame’ your dark thought.

She also mentioned a therapist at the NSRC who is working towards being a family counselor. She felt that he might be of some help to us as a family. She had heard that Dr. Mendez had come to visit you. I guess that Dr. Mendez can’t sneak into places like the NSRC.

We talked a bit about stem cell therapy. I mentioned that I imagine the onset of stem cell treatments is going to change how rehabilitation medicine is done. She agreed and said, in fact, that the annual meeting for rehab medicine this year was about that very thought. There are some exciting times ahead for brain injured people. I hope that you will benefit from it.

Since our family meeting a few weeks ago, I have tried to educated myself on left neglect and various therapies for it. There are some drugs that can be used with mixed results and some other mechanical therapies. I wanted to know more about what works and what doesn’t. You have been started on a new drug for left neglect that is used for Parkinson’s patients.

We talked a bit about strategies for coping with left neglect. A therapy called the Lighthouse strategy was discussed. Your OT had given me a copy of it to read. Your NSRC doctor feels that this is a worthwhile undertaking.

Today, you had a great session with your PT. She knows just what to say to motivate you. You did more walking with the cane and did the stairs twice! Tomorrow, your PT suggested that she might set you up on a treadmill! You are quite excited about this idea. The treadmill that we have at home could be rigged up with a harness to support you so that you can practice walking safely.

This afternoon, Ann and Paula from Truro came to visit you. Individually, they both are positive and spiritually grounded people, but when they are together, their positive messages almost send you into orbit. This visit was the real pick-me-up of your day.

Tonight’s phone call was the easiest one in a week. No tears! With all the positive messages coming from all directions … Dr. Mendez Hope for the future, PT’s hope for the present and Ann and Paula’s Hope from your community… With all this light being shone on you, how could you feel any darkness?

Monday March 1 - Brush Your Teeth and Smile

2010-03-03T23:50:00.001-04:00

For a moment this morning, I thought about the garden next year – a flicker of normal thinking. It was a brief thought but a welcome thought. I have noticed that the ground is soft. Although it is still pretty cold … I can’t wait until I get my hands in the soil. I was working in Mum’s garden the day of your stroke. It seems fitting if we could end this chapter of our lives with me elbow deep in beautiful nourishing soil again.

Your NSRC doctor mentioned that talk therapy would be good for you. “A multiple-modality approach”. She said. To date, I don’t think you have seen a psychologist. More important then that, you don’t think you have seen one yet.

I walk in to see you eating breakfast. Oh, you look so good. You are wearing one of my favorite blue shirts that make your eyes shine. A few days of beard growth adds to your look, I think. It seems like a very long time since I last saw you. Your hug felt wonderful and charged me up for the day.

As you sit on the toilet, we talk. Most of our deep conversations take place in the john these days. I ask about some of your experiences at the NSRC this past weekend. “I don’t know.” You said. “You don’t know?” I ask. “Listen, if you could make money by the amount of things that you DON”T know, then I’d be a millionaire … I’d be a f---ing millionaire!”

Your regular PT is not working today. You have fill-in PT and a new student. I asked if it were possible to video-record you walking so we could show the children. The PT team got you standing and then walking between the parallel bars to warm up. After this we went into the hallway and you walked almost halfway around the hallway loop. It is tiring work for you but you stick it out.

When you are in physio, you are of an entirely different mind set. You are upbeat and enthusiastic … almost joyful. I had thought that this was because of the wonderful PT you have working with you but today I realize that’s it the act of physio that brings out the best in you. It is not who you are working with that is important … although I think that you have been blessed with wonderful PT’s since you started this journey.

You want to show the video to the children on the weekend. You want this to be a present to Tara. “I don’t know when I can handle being a good parent to the children. They are the most important part of my life. I don’t want to breakdown.” We talk about how we will protect them form your dark moments. You start thinking like a protective parent again. “If I breakdown, then we should try to remove the children from the situation to protect them from seeing me like that.”

You have more negative thoughts. This talk drains me emotionally. You are stuck in the punishment stage. “I am planning to spend the rest of my life with you.” I said “But I’m running out of ideas of what to say to you to help you get past this difficult time.” This must be your rock bottom. You have to get past this stage.

You struggle with your thoughts and search for answers to unanswerable questions. “The more answers I have the more I can continue to move in the right direction. It takes me longer to process things. What you can figure out in seconds takes me an hour. I don’t get there as fast but I still want to get there. I will need your help ... because I want to be a whole person. I want to be of some use.”

Your OT visited. We discuss the plans to accommodate stair lifts. The insurance plan doesn’t cover much. So we will have to be creative to make these changes. You start to feel a little down with this information. You interpret the lack of insurance funds as being a good reason for you to vanish. You reason “If I wasn’t here then these costs would go away.”

The OT and I are quick to shut down where your thinking is going. “We may save on some small monetary costs but think of the huge emotional costs to your children.” Growing up without any father is a big disadvantage to any child. “Kids living with parent who have challenges grow up being more empathetic and stronger as individuals.” Your OT agrees. She knows first hand. She has a parent who had some significant health issues when she was a child.

Challenges make you stronger … not weaker.

We talk about your wheelchair. The OT is in the process of identifying a wheelchair that would be appropriate for you. Soon we will have an idea of what type of chair and the associated costs.

Next week you are going to attend a wheelchair skills group. This group meets twice a week to teach wheelchair safety tricks. It should be good because you might be able to learn to compensate for your left neglect.

After the OT left, you said with despair “I wanted out. Why didn’t you let me go?” You start circling the decision to do the surgery. I know that it is the stroke that is talking not you – but it’s still hard to hear. I know that you will get better with time but you question this.

You question your ability to parent our children. “Your intuitive sense of how to be a parent is still there.” I said. “You may have to adjust the ‘how’ part of parenthood but you still know the why, when and where parts of parenthood.”

“You will have to help me be a parent – I don’t even know what they ask me sometimes …I’ve changed.” I think that your relationship will change with the children … but it could be a better relationship. You point out “I will need more sleep and with all my crying, Quinn wants to comfort me. I could read to Quinn, go to bed early with Quinn … he would love that.”

“I’m learning as we go, Gwen … as much as the kids are. I do feel good about that but with Tara on Saturday. Not hugging her – I didn’t even know it. I am so busy thinking about myself, that I can’t even think about. “Look how lucky we are that Tara is a good communicator. She didn’t lock her feelings up like I would have and let her hurts fester. She told a grown up and shared. That is great that she can do this.

We will all learn from each other.

Next Monday is Tara’s birthday. We go to the gift shop in the VG and look at cards. One for Tara. We will celebrate her birthday on Sunday. We also get a card for your OT who is leaving for a different position on Friday. She promised you that the two of you would go out for coffee on Friday.

We get back to your room and you are stuck on bad thoughts again. Out of desperation, I say ”This is a conversation that you can have all by yourself now … why involve me … It makes me feel bad. We have been over this and over this. You must know all my answers to your worries by now … we have done this dance so many times.” Just as I was about to loose it with you, the phone rings. It’s your Mum. Saved by the bell.

Dr. Mendez’s office called her and Dr. Mendez is coming to see you tomorrow first thing in the morning! She asked if I could be with you when you meet Dr Mendez. I’m on call tonight and the children go to school and I go to work at 8AM. I don’t see how I can swing a road trip to Hailfax at 6:30 in the morning on such short notice.

Your Mum is worried that without an advocate by your side, Dr. Mendez will not be as impressed with our plea for help. I sincerely doubt that. Your Mum is a gifted letter writer. I’m sure her letter said all that needed to be said … and who better to make a plea then a mother ... even Dr. Mendez has a mother … he should know how powerful a mother’s will is.

On the way home Tara plans her birthday. “Gift cards for books, an ice cream cake, a whole day with you Mum and for dinner I want beef wraps with chocolate mousse for dessert. This is the benefit of having another planner in the family. I can just sit back and take orders, rather then have to think of everything myself.

Tonight’s bedtime call you circled the ‘I am not much of person’ thought. After a day of pulling you out of these deep dark holes, I am worn out. About all I could do was try to change to subject and talk about Dr. Mendez. “Just be yourself and tell him that you are very motivated to want more for your recovery.” I said. “Let him connect with you.”

Maybe there will be hope with Dr Mendez.

“I just want to say one more thing.” Oh no, I think, please don’t go down that path again – I don’t think I can do it. But you surprised me with what you said next. “Do me a favor please.” I hesitate, “What?” I ask. “When you brush your teeth tonight, look in the mirror and smile. Remember that I used to make you smile.”

After a tearful goodnight and sweet dreams, I made a sign and stuck it on the mirror so that the three of us can think of you while we brush our teeth … and smile.

Sunday February 28 – The Hungry Wolf Pack

2010-03-01T23:46:00.000-04:00

This was supposed to be my morning to sleep in as long as I didn’t get any animal emergencies. I can’t sleep. I awake at 5:45am with negative thoughts circling my head. I can’t shake them. I give up on sleep and start the day. Getting up is like pressing the reset button. It allows my mind to re-boot. I leave the bad thoughts on my pillow.

When your negative thoughts circle you, I picture a scared animal being hunted by a wolf pack. The bad thoughts are the wolves and you are the prey. You are surrounded and you try to fight them off one at a time. But they keep coming. Your wolves are lean and hungry, fearless and desperate. They will do anything to force you to make a mistake. They circle you … waiting. Wearing you down to the point of exhaustion. Periodically, one wolf will make an advance and scare you so much you wish they would just get it over with and finish you off.

I feel like I’m the outsider who attempts to scare them off. I succeed in frightening some away, but I can’t get rid of them all. They keep coming. Now I am feeling surrounded by them too.

While thinking about this, I realize that distraction is what you need. Talking about your fears doesn’t seem to help. Trying to get you to think rationally about your fears doesn’t help. Maybe if you could be distracted from your fears … you could leave your fears somewhere else like I do.

I devise a plan to get you distracted from your fears. Hopefully you will get lots of phone calls and a few visits today. It will make your day pass easier. Hollis dropped by the house on the way to Halifax to visit you. As a fellow stroke survivor, he can identify with some of the feelings that you have. That should make for a good start to your day.

I try calling though out the day … lots of no answers and some busy signals. I was called into the animal hospital a few times but all easy to fix things … thankfully. I felt useful and skilled … two adjectives I haven’t felt on a weekend for a long time ... it was a nice feeling.

I went over to Juanita’s and found the children still in pajamas! My Mum is away this weekend and Juanita and Wayne have undertaken the task of soundproofing her bedroom. It was at the painting stage. I helped Juanita paint and clean Mum’s apartment. I felt somewhat useful although a little less skilled but that didn’t matter because I got to listen to CBC Radio Sunday Edition!

I haven’t listened to the radio for almost exactly six months. I love listening to CBC, especially on Sundays. Painting and listening to debates about Catholic Church in England and the role of God in sports. It transformed me to a different time in my life when I could garden or do boring mundane housework for hours on end while listening to CBC … I almost felt normal for an hour or so.

I tried to call again … busy. It turns out that your Mum, Steve and Fran called. When I did get through you sounded a little better then yesterday. You ask about the children. You felt badly that they were so upset with yesterday’s visit. “Maybe I shouldn’t spend time with them. I don’t want to hurt them … I wasn’t a father to them – too much crying.” You said.

You fear that the stroke took away your ability to be a good father … another hungry wolf fear.

You felt low earlier today. So low that you wanted to smoke. You wanted to smoke so badly that you actually asked another patient for a cigarette! Crazy as it sounds …God was looking out for you though. It turns out that the fellow patient had just decided to quit one hour before you asked her. She had no cigarettes. She had started a drug that helps curb the urge to smoke. “I can’t catch a break or get an stiff upper lip.” You said.

To follow my new plan to distract you from your misery, I read to you an email from the ultra-marathoner, Sue. She sent more encouraging words. I read the email to you. You reply very matter-of-fact like “That’s great! I want to get some training tips from her. If I can’t run fast then I’m going to run for a long time.” You were serious and sincere. I am amazed at how quickly you can swing from one state to another. Even at this sport it’s hard to keep up with you.

Saturday February 27 – Bad Thoughts

2010-02-28T22:44:00.001-04:00

This is the first weekend that I am not with you. It’s hard not to be by your side but I try calling you through out the day.

Juanita, Wayne and the children went to see you this afternoon while I stayed in Truro. There wasn’t much to do on call, so I busied myself at home. I cleaned and organized - my standing prescription for anxiety that I can’t address directly.

You had a bad day today. Bad thoughts consumed you. When you get like this, it’s as if your mind is trapped on a negative thought and you can’t shake free of it. Your mind circles around the thought and periodically you dive into the middle of it with desperate pleas to end your suffering. I try to get you thinking about other things but it’s hard to think of things to say when I feel your pain. It seems that my efforts to help, can occasionally stop you from diving into the middle but I fall short when I try to stop you from circling and obsessing on a thought.

Juanita was upset about leaving you. The children felt your despair today too. Juanita did her best to help you past your bad thoughts while Wayne tried to distract the children. It didn’t work. Tara ‘s (and I suspect Quinn) keen ears overheard a lot of your fears and thoughts. She doesn’t understand why you say those things.

When they got back to Truro, Tara called me. I was on the phone to you at the time. You were crying. I ask you to wait while I talk to Tara and Quinn on the cell phone. Tara is upset and needs to talk. She gives me a detail description of how the day went. She is hurting … and almost angry. She felt ignored by you.

Tara and I talked. Tara is struggling with your despair. I tried to explain that when you are in a very sad mood, you are not yourself. I pleaded with her to try to think of something good that happened today. She couldn’t think of anything.

Quinn also felt your pain. Several times on the drive home, he tugged Tara’s ear. When he talks to me on the phone, he is crying. He can’t tell me why. Quinn is so empathetic. He picks up your bad feelings and absorbs them.

Because I’m on call tonight, they are spending the night at Juanita’s. I tell them that I’ll be right over to tuck them into bed. When I get there, Quinn just wants to be held and hugged. I don’t know how to help them through this except to follow my instincts. I realize that our whole family is going to need some sort of counseling if the children are going to get through this emotionally healthy.

My heart is hurting too. With my whole family feeling sad, I feel doubly sad because not only am I failing at getting you to feel better but also I wasn’t there to protect the children when your bad thoughts bounced off them.

I have written before that when you have a bad day … I also have a bad day. Now I think we have to expand that to the children. I can protect them when you are in the hospital in a controlled and time defined setting. But when you get home … it’s going to be much harder.

Friday February 26 – Suck It Through and Reload

2010-02-28T08:05:00.000-04:00

This afternoon, The home care lady from the NSRC called me at work. She has been starting the legwork on setting up home care for you. Thankfully, there appears to be no substantial waitlist. Eventually, we can even do ‘self managed homecare’ which sounds like a better option for you.

With this program we would hire a personal care worker, make a work schedule and write a job description. We might even have access to some MSI funds to do some of this. She should have more information by the fourth of March, which still gives us three weeks to get something in place.

When I got home today, there were two surprises waiting for me. A package from the sister of your old friend, Donald. Ruth sent a package to the children too. Animal fact sheets with a note about her memories growing up with her brother in Amherst many years ago. The children were quite excited. Tara and Quinn wasted no time organizing the fact sheets.

My package had a letter, an apron with the word ‘Hope’ written all over it and a note for you about ‘Hope’. The card said:
“Of all forces that make for a better world, none is so powerful as hope. With hope, one can think, one can work, one can dream. If you have hope, you have everything.”

Lately, I have been so bogged down with the details I have forgotten the big picture. I had forgotten the word that started this marathon. HOPE. I promised myself that I would not forget again.

The second surprise was a phone message. Dr Mendez’s secretary called. She was asked to call to get your mother’s phone number! Dr Mendez received her letter. When I told her later in the evening, she squealed with excitement. She has been feeling overwhelmed by everything that surrounds you. Now she is able to do something … anything that could make a difference. I am excited for her. More HOPE.

Today you were measured of a wheel chair. Your OT is identifying the features your wheelchair needs. She had said to me at the family meeting that it would be a basic wheelchair. But today, you have been left with the impression that it will be quite special and expensive.

I’m glad that I’ll be there on Monday. I need better details.

Last night I emailed an old friend of ours. Sue. She is a vet who I worked with in Ottawa where we first met. She is an amazing athlete. She is possibly a little over five feet tall and barely 100 pounds. She is a runner … a serious runner … a crazy runner by most people’s estimation. She is an ultra-marathoner.

Lately, I have been thinking that my analogy to a marathon was wrong. This journey seems more like an ultra-marathon to me. When I thought of this … I thought of Sue. Sue sends us Christmas cards every year. I never got around to sending cards this year. She did not know of your stroke. So I thought that I would contact her and ask if she could call you this weekend.

I kicked myself that I wasn’t leaving much time for her to get the email from her work’s website. I should have done this earlier. I needn’t have worried. Sue called you tonight, shortly before I called you. You had a great talk with her about running and 12 step programs.

After your talk with Sue, you said to me “Maybe I was meant to do something big – like ultra marathons. I am still a runner … I just have to keep running.

You have always enjoyed a phrase you overheard your father say once. “Suck it through and re-load.” You had the impression this was his attempt at not swearing while being very frustrated.

The real meaning is starting to come clear. “Suck it though and re-load.”
For me it means “Get past things and move on.”
For you it means “I am still a runner.”
For both of us it means HOPE.

Thursday February 25 - A New Discharge Date

2010-02-27T22:42:00.000-04:00

“You might want to sit down.” You said as we started our nightly phone call. I was sitting and trying to eat my dinner while getting children to brush their teeth and talk to you. An average night full of multitasking.

“I have a new discharge date. March 25th. They want me for two more weeks.” You sounded like you had mixed feelings about it. I did too. I want you home. I want to start living our new life together but I also want you to get the most that you can out of the NSRC.

“That’s great.” I said trying to convince us both that it IS great. I know that it’s great news but I still worry about it really means.. Maybe they want to work more on stairs; maybe they want to do something else or maybe they just need more time to get what they had started done. I tried not to speculate about it too much. “Two weeks is nothing compared to a lifetime.” I tell you. “We’ve waited this long, Two more weeks is easy.”

You feel that you are doomed. “It’s a Karma thing.” You explain. “I’m going to get home and then I’ll have another massive brain bleed again within two weeks.” I scold you for talking negative again. “That type of talk isn’t going to help your cause.” I change the subject to get you off that track – it’s like a well-worn luge run. Icy, slippery and dangerous. I don’t want to go down that path.

“Did you get the things you wanted from Marsha?” Marsha collected some things from home for you yesterday and took them down to Halifax today. She delivered them to you after her work. One item was a poster. A special poster. One of three posters you collected at the Boston Marathon last year.

You wanted the poster to give to your PT. She has been such a great inspiration to you. She always has a story to share. Stories about people and their lives. Her calm voice captures your mind with a story while she cues you through the exercise that she is doing with you. It is amazing to watch. Like a well choreographed dance.

The poster is special. It has a photo of Boylston Street in Boston packed with triumphed runners. Many, draped with silver thermal blankets, drunk with the joy of having completed the Boston marathon and moving east on Boylston street. The runner’s heads are faced away from the camera. All you can see are heads and thermal blankets. The sunlight is bouncing off the windows of the buildings that line the street. The light creates a small rainbow effect.

It’s a great picture. It is great because of the some other special content. This picture is worth 26,385 words … actually not words – names. The photo has letters for pixels. And the letters spell the names of the runners. All 26,385 runners. They are listed in alphabetical order. There is a caption on the picture. It reads: “Greatness goes by many, many names.” Your name is about an inch above the ‘G’ of Greatest.

You want your PT to have this poster because some day you want to be in one of her stories that she tells other people when she is trying to inspire them to do their best.

Your PT had said at the beginning for your stay there that she felt that you would be able to walk short distances with assistance. I expect that if you were an average person, she might be right but you are a marathon runner. She didn’t consider who she was telling that too. The word ‘short’ is a relative term. To one person, short distances may be to the bathroom and back. To you, a marathon runner, a short distance is 5- 10 kilometers.

Today you broke free of the parallel bars. You walked with the cane about the gym! Oh I can’t wait until I can see you on Monday. You tell Tara on the phone. Tara can’t believe it – “That’s awesome Daddy. She giggles. She is so impressed that she says “I can’t believe it.” “I’m not lying.” You say half serious - half tease. “No Daddy, I didn’t mean I don’t believe you – I mean I can’t believe IT – It’s happening!” “It’s a dream come true.”

Another item that you requested was a copy of the stand up comedy routine you did at the church a few years ago. It is entitled “On the Seventh Day He Cleaned”. During your performance you recount stories about your experiences in the church. It was a great show and although you were quite nervous about doing it at the time, you did it anyway. You are quite proud of it now ... and have every right to be proud. It is very funny.

You want to show the DVD to some of the recreational therapy staff. You want them to see the other side to you. The dry humour with a deadpan face is a skill that you had long before the stroke. You want to show the people at the rehab that you are still you. Your humour isn’t ‘inappropriate … it’s funny, really funny.

I received in the mail a book that I ordered for you. It is written by the same woman who wrote the ‘One handed in a Two Handed World’ book. This book is entitled ‘Teach Me to Run’. In this book, Tommye-K Mayer recounts her recovery from a nearly fatal thalamic cerebral hemorrhage. She works at the recovery and builds on it until she learns to run again. She has left with left hemi-paresis. Just like you.

On the back cover, Bill Rodgers, a world famous distance runner and one of the 26,385 names on the poster, write about his admiration for Tommye-K. Bill is a ‘Great’ hero of yours. I haven’t told you about this book. I am saving it for a special time when I think you may need to hear her story. I don’t know when that well be …I am going to trust that I will just know when it’s the right time.

Wednesday February 24 – Somehow We Just Know Things

2010-02-25T23:20:00.002-04:00

This morning I did a special job for you. You have been watching the calendar closely. You remembered that Nellie, a hospital maintenance worker at the Colchester hospital, is retiring this month. She retires after 29 years of service. Nellie is one of the first people who you met after really waking up. You worked hard at remembering her name. Once you had her name you won’t let go of it. Her name is like a trophy. “If I can remember Nellie then I can do more.”

You had promised Nellie that you would buy her a Tim Hortons large black coffee. So on my way to work I stopped by hospital and hand delivered a gift card to Nellie along with a card. Nellie was delighted that you remembered her and said as she hugged me “Give Chris a big Nellie hug for me.”

I had thought that going back to the hospital would be a tough job. Walking past the room you were in brought back memories of your stay there. But the anxiety of the visit evaporated away quickly as I met people that worked with you during your stay there. They all wanted to know how you were doing and pleased to hear that you were walking. I felt that I was with old friends while on the fourth floor.

I know where you will walk to the first chance you can … to the hospital to visit your friends.

The home care coordinator called me at work. She wanted to get an idea of what degree of home care you will need. She wanted to know if you could be left alone. I don’t know. As things stand now, I don’t see how you can be home by yourself when you can’t transfer to a toilet without help. I know that this is going to get better with time but I suspect that you will need to use the toilet occasionally before that time!

The coordinator talked about the number of hours that they might be able to do based on availability and the associated costs. I told her that we don’t need someone to Chris-Sit you and do meals and light house keeping. I would rather pay someone to help you with your recovery plan. Any extra money we have I want to put towards your recovery not your maintenance. She mentioned that physio have a home exercise program that a home care worker can do with you.
It sounds like the coordinator and I are on the same page. She understands that I want to make the best use of the services offered to us. I ask about a self managed care program. She thinks that this might be a good program for us and is going to check into things a bit more.

I’ll be glad when we can get a plan on paper.

Tonight’s call started with the children. Tara giggled and teased you and I could tell that you were teasing her. She asked you some math questions. She want ed to test your multiplication skills. You were right on with the 11 and 12 times table.

As you talk to Quinn he looses another tooth. He is pleased because he has been working on this tooth for a while. He tells you about a project he is doing at school about Korea. He is excited about it and wants you to see the finished project when you get home. Quinn is also excited about the first weekend in March. He has a gymnastic meet in Halifax on the Saturday and I told him today that we would all be able to go to it.

The first weekend of March is also the weekend before Tara’s birthday. Tara agreed that she would put off having a party until you come home. She wants a summer party anyway. She feels a little ripped off that her birthday is at the ‘crappy weather’ time of year. She wants to have an outside party with all sorts of warm weather things. I suggested to her that she could have her birthday party in early June. She is OK with this idea. Now we have to think what would she like for a present.

Ten is a special age. The first double-digit birthday. With double digits and pimples and puberty around the corner, I want to give her a meaningful yet useful present. I ask you to think in it.

The last week or so, you have been getting dressed and doing your morning things with the OT assistant guiding you. The other day you showered using a shower bench. You didn’t think it went well. “I nearly drown.” You said. Tomorrow you get to shower with the OT assistant again. You groan at the thought as you tell me.

PT was good but no stairs today. You leg brace was adjusted a little. It was given a little angle so your leg won’t buckle. That might make stairs a little easier.

We spent a long time on the phone talking about the first day of your recovery. The day of your surgery. You wanted to know how I made the decision to do surgery. I think you felt that I must have put a lot of thought into the decision. I tried to explain that very little thought went into it. I just knew that I couldn’t give up on you. The children needed you.

I told you I asked the doctor what ‘reasonable recovery’ meant. Could you still be a Daddy with a reasonable recovery. At the time, I couldn’t think beyond that concept. Saying yes to the surgery was far easier then saying no. It was only afterward, while we waited to see you after the surgery, that I wondered what I was making you go though. But deep down I knew that surgery was the right thing to do.

Somehow I just knew.

Today you talked to a priest. You talked about forgiveness. The priest told you that God has already forgiven you. God has even forgiven you for not forgiving yourself. He said there would be a point in your life where you will know that you are forgiven. You won’t have to be told by anyone.

Somehow you will just know.

Tuesday February 23 – We are a Unit

2010-02-25T23:20:00.001-04:00

The other day you asked me “What will I do for work?” My answer was: “You will work at recovery.” That will be a fulltime job. The hours will be long and it is going to be hard work, sometimes monotonous and the pay will suck but the payoff will be worth it in the end. There will be days that you don’t feel like it. Just like there were days that you didn’t feel like running … but you ran anyway.

Your work will become your passion.

Today at work, I had a client visit whom I have known for a number of years. I first met him with his little Corgi dog and now he and his wife have a little Westie. His wife has MS. It was and is a condition that affected both of their lives.

He asked me about you and how things were going. I told him that you were making a recovery but there will be a lot of adjustments for both of us. I told him that the adjustments scared me a little.

“We went through that sort of thing too.” He said. His wife had to accept a lot of things that she didn’t want to accept. All the way through it he would remind her “You don’t have MS … We have MS. We are a unit.” He tells her frequently that they would get through it together. So far they have.

Intuitively, I knew this, but I didn’t acknowledge it fully until I heard his words. He is so right. We are in this together. Your pain is mine and mine is yours. Your strength bridges my weaknesses and my strengths bridge your weaknesses. We are a unit. Some days we are a ‘hurting unit’ and some days we are strong.

We got an email today from Linda in NB whose husband, Marc - a marathoner and father to slightly older children, had a stroke for now apparent reason. His stroke was in April 2008. He is making a remarkable recovery. She has been following your recovery and identifying along the way with the worries and struggles that we have had. She has managed to send us notes of encouragement when it looked like we needed it and her timing has been God sent.

Today she sent an email that I felt you really needed to hear: “It's a shame Chris feels he won't be the same father he was before, because our kids have never expressed any concerns or regrets over this. They just go with the flow. He supports in different ways and they seem to have come through the whole experience, I believe, as more understanding of people with physical challenges. Hope things are going well. Tell Chris to keep up the hard work.”

I believe that Linda is right. Our children will be stronger and more empathetic people, as grownups, having experienced this time in their lives. They will be richer for having such amazing role models in their lives like you and Marc.

It was a great meeting with the local OT person. She is enthusiastic and has a ‘glass half full’ attitude. She is on-board with my thoughts that your conditions is regressive not progressive. Chances are things will get better not worse. We need to plan for safety and for your care but we don’t want to remove the motivation to work at getting better.
She has been an OT for a number of years. I suspect she has good gut feelings about her patients. I think you will like working with her.

We have a four level split house. Together we tour the house and discuss stairs and ramps; beds, toilets and bathtubs. We even look at the kitchen briefly. She takes measurements and asks lots of questions. She thinks that a stair lift or two or three (one of each set of stairs) would be workable although the left neglect is a bit of a worry.

She asks about your insight and judgment ... an area that isn’t easily assessed by a stranger. I tell her that by nature you are a cautious guy. ‘Safety first’ is your rule and I don’t believe that the stroke has changed that. If anything you are a little more mindful of injury. But the left neglect isn’t covered by your rule. If you don’t knowledge your left how can you apply safety rules to it. This will have to be a learned skill. In the meantime, we have to protect you from injury.

She is going to come back next week with a guy. A home care appliance guy from Lawton’s Drug store. He is going to bring examples of things that we can install to make life a little easier and simpler for you.

You did stairs today! I couldn’t believe my ears when you told me. I know what stairs you did. In the PT room there is a staircase that goes up 3-4 steps. It has handrails on either side. A few weeks ago I watched an older lady who was an amputee walk up and down the steps. As you describe the effort you put into it, I could imagine you climbing these stairs. You felt it went well. But your PT is a little worried about your leg buckling. She feels that if the leg brace was adjusted, then you might be able to do steps a little safer. She is going to get the OT to look at the brace.

“My contribution to the family will be to do stairs.” You said proudly. “First stairs … then a I’ll get on a bike!” I express some concern about a bicycle. I picture you out on the road with no left field vision. A huge blind spot – a recipe for disaster. You are picturing the stationary bicycle to start. “I am pissed off – I want to get some independence.” You said.

I remind you what the local OT said. “When Chris gets home – the first weeks will be difficult.” There will be challenges, upsets and reminders of what you can’t do anymore. The first weeks at home will be a reality check for both of us.

You agree with this prediction. “I’m in purgatory right now but I will work my way out of here any way I can.” You reply.

When you get home, you said you want to buy me a special gift. Jewelry or something like that. I don’t especially value jewelry but the idea is important to you. I am more interested in getting you home and getting our family back to it’s ‘new normal’. Presents can wait. To pacify you, I make a deal. “When you get home and have an entirely great week, then you can get me a present.”

Whatever we get or do it will be together … because we are a unit.

Monday February 22 – Rant the Worries Away

2010-02-24T23:56:00.001-04:00

Martha visited you early this morning. You had breakfast together. “I rant to her until she has to go so I then I have to stop the rant.” You said. Ranting and letting go of your worries and fears seems to be the best medicine lately. Once you put a concern into words, out of nowhere, some kind supportive person allows your words to fall on their ears and they help you throw the worries away. It seems that once you verbalize your fears, you are able to acknowledge how unimportant they really are. Today, it was Martha, last week it was your Mum, before that the nurses, OT and PT.

Tonight, you shared your latest fear with me. You fear that I will leave you for another man ... someone who has been there for me through these past rough months. “Yeah, I might do that, but I won’t have to leave you to do it because you are ‘that man’. We will help each other through this.”

Even though this sounded like a bad movie script or a rather sorry country music lyrics … it still makes you feel better. When you feel good … I feel good.

Last night I talked with you about getting a weekend pass for next weekend. I am on call and can’t come to the city to visit you. You asked the OT what she thought of the idea. She is concerned about a weekend pass. You felt that she is specifically concerned about your safety doing transfers and getting into the house. Of course, with me on call, the weekend will be unpredictable. I won’t know whether I will be called in to see an animal or not. Typically, February isn’t a very busy time, but there really is no predicting it.

You respect the OT’s concerns. You have gotten to know her and feel like she is a concerned friend. I appreciate that she is very safety conscious and has to be. Your left neglect is a big safety issue.

I had a call from the OT who works out of the local hospital today. She is coming to do a home visit tomorrow. Among many things, she is going to help us plan what we need to do to facilitate your homecoming.

I am a little worried about what she might say. Past experience has shown me that when my anxiety increases … then is usually a good reason. I guess I’ll have to wait until tomorrow to find out. You are a little worried too. You want me to call you as soon I can after she sees the house.

Sunday February 21 – Counting the Days

2010-02-24T23:48:00.000-04:00

This morning you suggest that we should have a regular family Sunday meeting. To make a plan for the week. “A plan for what I want to achieve for meals and other jobs.” You want things that allow you to develop interests and feel like you are contributing to the family’s well being. A lot of what you need to do in a day should be oriented towards facilitating your recovery. A carefully planned day that allows you to work the parts of your brain and body that need the extra help and attention.

It has been suggested to us that you will need supervision while at home. Neither of us know what this means exactly. A lot of it has to do with the fact that the left neglect makes things unsafe for you. If constant home care is going to be a fact then we should make the most of the people power and use their time to keep you on track to sticking to a recovery plan. A plan with daily, weekly and monthly goals.

This can be a plan that extends to the whole family. Sunday can be a family goal setting time. As you talk about this I can’t believe my ears. The words ‘plan’ and ‘goals’ are music to my ears.

Slowly the thought is entering your mind. “Why me? Why did the stroke have to be so severe. There are all sorts of stroke survivors who suffer far less then this.” This is true, currently two of your three roommates are walking after their stroke. Of course you may not see their true losses as easily but all you know is how your loss feels. And it hurts.

“I just want to walk, to run, to play with the kids, to swim and bike. I just want my body back.” This is so hard to hear. It reminded me of the time Juanita and I talked on the phone shortly after she lost her first baby early in her pregnancy. We were all so excited about the new life in the family and Juanita wanted to be a mother more then anything. She said weeping over the phone “I just want my baby back.” Those words still tear at my heart when I think about them. Your words rip my heart out.

In the afternoon, Martha came over for a little visit. While she spent time with you, I took the children for a swim. They had fun in the pool. It was a good weekend with all four of us under the same roof. But Sunday afternoon came and went too fast. I am beginning to dislike Sunday afternoons when we always part. I am looking forward to the Sunday where the afternoon flows to evening and evening to bedtime and we are still all together … under the same roof.

Earlier today, Quinn was counting days again. His part-time passion. He was counting days to Tara’s birthday and his birthday and to the Cabot Trail Relay race. Tonight, at bedtime, Quinn asks, “Is Daddy is going to be home in one month?” “Well, we don’t know for sure, but he will be home about then … maybe only three weeks!” Quinn pauses, smiles and says, “That’s only 21 days. That’s not much!”