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.
Sunday, June 6, 2010
Friday, June 4, 2010
May 16 - 22 - Worst Year and Best Year
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.
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.
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.
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.
Subscribe to:
Posts (Atom)