Sunday, February 28, 2010

Saturday February 27 – Bad Thoughts

This is the first weekend that I am not with you. It’s hard not to be by your side but I try calling you through out the day.

Juanita, Wayne and the children went to see you this afternoon while I stayed in Truro. There wasn’t much to do on call, so I busied myself at home. I cleaned and organized - my standing prescription for anxiety that I can’t address directly.

You had a bad day today. Bad thoughts consumed you. When you get like this, it’s as if your mind is trapped on a negative thought and you can’t shake free of it. Your mind circles around the thought and periodically you dive into the middle of it with desperate pleas to end your suffering. I try to get you thinking about other things but it’s hard to think of things to say when I feel your pain. It seems that my efforts to help, can occasionally stop you from diving into the middle but I fall short when I try to stop you from circling and obsessing on a thought.

Juanita was upset about leaving you. The children felt your despair today too. Juanita did her best to help you past your bad thoughts while Wayne tried to distract the children. It didn’t work. Tara ‘s (and I suspect Quinn) keen ears overheard a lot of your fears and thoughts. She doesn’t understand why you say those things.

When they got back to Truro, Tara called me. I was on the phone to you at the time. You were crying. I ask you to wait while I talk to Tara and Quinn on the cell phone. Tara is upset and needs to talk. She gives me a detail description of how the day went. She is hurting … and almost angry. She felt ignored by you.

Tara and I talked. Tara is struggling with your despair. I tried to explain that when you are in a very sad mood, you are not yourself. I pleaded with her to try to think of something good that happened today. She couldn’t think of anything.

Quinn also felt your pain. Several times on the drive home, he tugged Tara’s ear. When he talks to me on the phone, he is crying. He can’t tell me why. Quinn is so empathetic. He picks up your bad feelings and absorbs them.

Because I’m on call tonight, they are spending the night at Juanita’s. I tell them that I’ll be right over to tuck them into bed. When I get there, Quinn just wants to be held and hugged. I don’t know how to help them through this except to follow my instincts. I realize that our whole family is going to need some sort of counseling if the children are going to get through this emotionally healthy.

My heart is hurting too. With my whole family feeling sad, I feel doubly sad because not only am I failing at getting you to feel better but also I wasn’t there to protect the children when your bad thoughts bounced off them.

I have written before that when you have a bad day … I also have a bad day. Now I think we have to expand that to the children. I can protect them when you are in the hospital in a controlled and time defined setting. But when you get home … it’s going to be much harder.

Friday February 26 – Suck It Through and Reload

This afternoon, The home care lady from the NSRC called me at work. She has been starting the legwork on setting up home care for you. Thankfully, there appears to be no substantial waitlist. Eventually, we can even do ‘self managed homecare’ which sounds like a better option for you.

With this program we would hire a personal care worker, make a work schedule and write a job description. We might even have access to some MSI funds to do some of this. She should have more information by the fourth of March, which still gives us three weeks to get something in place.

When I got home today, there were two surprises waiting for me. A package from the sister of your old friend, Donald. Ruth sent a package to the children too. Animal fact sheets with a note about her memories growing up with her brother in Amherst many years ago. The children were quite excited. Tara and Quinn wasted no time organizing the fact sheets.

My package had a letter, an apron with the word ‘Hope’ written all over it and a note for you about ‘Hope’. The card said:
“Of all forces that make for a better world, none is so powerful as hope. With hope, one can think, one can work, one can dream. If you have hope, you have everything.”

Lately, I have been so bogged down with the details I have forgotten the big picture. I had forgotten the word that started this marathon. HOPE. I promised myself that I would not forget again.

The second surprise was a phone message. Dr Mendez’s secretary called. She was asked to call to get your mother’s phone number! Dr Mendez received her letter. When I told her later in the evening, she squealed with excitement. She has been feeling overwhelmed by everything that surrounds you. Now she is able to do something … anything that could make a difference. I am excited for her. More HOPE.

Today you were measured of a wheel chair. Your OT is identifying the features your wheelchair needs. She had said to me at the family meeting that it would be a basic wheelchair. But today, you have been left with the impression that it will be quite special and expensive.

I’m glad that I’ll be there on Monday. I need better details.

Last night I emailed an old friend of ours. Sue. She is a vet who I worked with in Ottawa where we first met. She is an amazing athlete. She is possibly a little over five feet tall and barely 100 pounds. She is a runner … a serious runner … a crazy runner by most people’s estimation. She is an ultra-marathoner.

Lately, I have been thinking that my analogy to a marathon was wrong. This journey seems more like an ultra-marathon to me. When I thought of this … I thought of Sue. Sue sends us Christmas cards every year. I never got around to sending cards this year. She did not know of your stroke. So I thought that I would contact her and ask if she could call you this weekend.

I kicked myself that I wasn’t leaving much time for her to get the email from her work’s website. I should have done this earlier. I needn’t have worried. Sue called you tonight, shortly before I called you. You had a great talk with her about running and 12 step programs.

After your talk with Sue, you said to me “Maybe I was meant to do something big – like ultra marathons. I am still a runner … I just have to keep running.

You have always enjoyed a phrase you overheard your father say once. “Suck it through and re-load.” You had the impression this was his attempt at not swearing while being very frustrated.

The real meaning is starting to come clear. “Suck it though and re-load.”
For me it means “Get past things and move on.”
For you it means “I am still a runner.”
For both of us it means HOPE.

Saturday, February 27, 2010

Thursday February 25 - A New Discharge Date

“You might want to sit down.” You said as we started our nightly phone call. I was sitting and trying to eat my dinner while getting children to brush their teeth and talk to you. An average night full of multitasking.

“I have a new discharge date. March 25th. They want me for two more weeks.” You sounded like you had mixed feelings about it. I did too. I want you home. I want to start living our new life together but I also want you to get the most that you can out of the NSRC.

“That’s great.” I said trying to convince us both that it IS great. I know that it’s great news but I still worry about it really means.. Maybe they want to work more on stairs; maybe they want to do something else or maybe they just need more time to get what they had started done. I tried not to speculate about it too much. “Two weeks is nothing compared to a lifetime.” I tell you. “We’ve waited this long, Two more weeks is easy.”

You feel that you are doomed. “It’s a Karma thing.” You explain. “I’m going to get home and then I’ll have another massive brain bleed again within two weeks.” I scold you for talking negative again. “That type of talk isn’t going to help your cause.” I change the subject to get you off that track – it’s like a well-worn luge run. Icy, slippery and dangerous. I don’t want to go down that path.

“Did you get the things you wanted from Marsha?” Marsha collected some things from home for you yesterday and took them down to Halifax today. She delivered them to you after her work. One item was a poster. A special poster. One of three posters you collected at the Boston Marathon last year.

You wanted the poster to give to your PT. She has been such a great inspiration to you. She always has a story to share. Stories about people and their lives. Her calm voice captures your mind with a story while she cues you through the exercise that she is doing with you. It is amazing to watch. Like a well choreographed dance.

The poster is special. It has a photo of Boylston Street in Boston packed with triumphed runners. Many, draped with silver thermal blankets, drunk with the joy of having completed the Boston marathon and moving east on Boylston street. The runner’s heads are faced away from the camera. All you can see are heads and thermal blankets. The sunlight is bouncing off the windows of the buildings that line the street. The light creates a small rainbow effect.

It’s a great picture. It is great because of the some other special content. This picture is worth 26,385 words … actually not words – names. The photo has letters for pixels. And the letters spell the names of the runners. All 26,385 runners. They are listed in alphabetical order. There is a caption on the picture. It reads: “Greatness goes by many, many names.” Your name is about an inch above the ‘G’ of Greatest.

You want your PT to have this poster because some day you want to be in one of her stories that she tells other people when she is trying to inspire them to do their best.

Your PT had said at the beginning for your stay there that she felt that you would be able to walk short distances with assistance. I expect that if you were an average person, she might be right but you are a marathon runner. She didn’t consider who she was telling that too. The word ‘short’ is a relative term. To one person, short distances may be to the bathroom and back. To you, a marathon runner, a short distance is 5- 10 kilometers.

Today you broke free of the parallel bars. You walked with the cane about the gym! Oh I can’t wait until I can see you on Monday. You tell Tara on the phone. Tara can’t believe it – “That’s awesome Daddy. She giggles. She is so impressed that she says “I can’t believe it.” “I’m not lying.” You say half serious - half tease. “No Daddy, I didn’t mean I don’t believe you – I mean I can’t believe IT – It’s happening!” “It’s a dream come true.”

Another item that you requested was a copy of the stand up comedy routine you did at the church a few years ago. It is entitled “On the Seventh Day He Cleaned”. During your performance you recount stories about your experiences in the church. It was a great show and although you were quite nervous about doing it at the time, you did it anyway. You are quite proud of it now ... and have every right to be proud. It is very funny.

You want to show the DVD to some of the recreational therapy staff. You want them to see the other side to you. The dry humour with a deadpan face is a skill that you had long before the stroke. You want to show the people at the rehab that you are still you. Your humour isn’t ‘inappropriate … it’s funny, really funny.

I received in the mail a book that I ordered for you. It is written by the same woman who wrote the ‘One handed in a Two Handed World’ book. This book is entitled ‘Teach Me to Run’. In this book, Tommye-K Mayer recounts her recovery from a nearly fatal thalamic cerebral hemorrhage. She works at the recovery and builds on it until she learns to run again. She has left with left hemi-paresis. Just like you.

On the back cover, Bill Rodgers, a world famous distance runner and one of the 26,385 names on the poster, write about his admiration for Tommye-K. Bill is a ‘Great’ hero of yours. I haven’t told you about this book. I am saving it for a special time when I think you may need to hear her story. I don’t know when that well be …I am going to trust that I will just know when it’s the right time.

Thursday, February 25, 2010

Wednesday February 24 – Somehow We Just Know Things

This morning I did a special job for you. You have been watching the calendar closely. You remembered that Nellie, a hospital maintenance worker at the Colchester hospital, is retiring this month. She retires after 29 years of service. Nellie is one of the first people who you met after really waking up. You worked hard at remembering her name. Once you had her name you won’t let go of it. Her name is like a trophy. “If I can remember Nellie then I can do more.”

You had promised Nellie that you would buy her a Tim Hortons large black coffee. So on my way to work I stopped by hospital and hand delivered a gift card to Nellie along with a card. Nellie was delighted that you remembered her and said as she hugged me “Give Chris a big Nellie hug for me.”

I had thought that going back to the hospital would be a tough job. Walking past the room you were in brought back memories of your stay there. But the anxiety of the visit evaporated away quickly as I met people that worked with you during your stay there. They all wanted to know how you were doing and pleased to hear that you were walking. I felt that I was with old friends while on the fourth floor.

I know where you will walk to the first chance you can … to the hospital to visit your friends.

The home care coordinator called me at work. She wanted to get an idea of what degree of home care you will need. She wanted to know if you could be left alone. I don’t know. As things stand now, I don’t see how you can be home by yourself when you can’t transfer to a toilet without help. I know that this is going to get better with time but I suspect that you will need to use the toilet occasionally before that time!

The coordinator talked about the number of hours that they might be able to do based on availability and the associated costs. I told her that we don’t need someone to Chris-Sit you and do meals and light house keeping. I would rather pay someone to help you with your recovery plan. Any extra money we have I want to put towards your recovery not your maintenance. She mentioned that physio have a home exercise program that a home care worker can do with you.
It sounds like the coordinator and I are on the same page. She understands that I want to make the best use of the services offered to us. I ask about a self managed care program. She thinks that this might be a good program for us and is going to check into things a bit more.

I’ll be glad when we can get a plan on paper.

Tonight’s call started with the children. Tara giggled and teased you and I could tell that you were teasing her. She asked you some math questions. She want ed to test your multiplication skills. You were right on with the 11 and 12 times table.

As you talk to Quinn he looses another tooth. He is pleased because he has been working on this tooth for a while. He tells you about a project he is doing at school about Korea. He is excited about it and wants you to see the finished project when you get home. Quinn is also excited about the first weekend in March. He has a gymnastic meet in Halifax on the Saturday and I told him today that we would all be able to go to it.

The first weekend of March is also the weekend before Tara’s birthday. Tara agreed that she would put off having a party until you come home. She wants a summer party anyway. She feels a little ripped off that her birthday is at the ‘crappy weather’ time of year. She wants to have an outside party with all sorts of warm weather things. I suggested to her that she could have her birthday party in early June. She is OK with this idea. Now we have to think what would she like for a present.

Ten is a special age. The first double-digit birthday. With double digits and pimples and puberty around the corner, I want to give her a meaningful yet useful present. I ask you to think in it.

The last week or so, you have been getting dressed and doing your morning things with the OT assistant guiding you. The other day you showered using a shower bench. You didn’t think it went well. “I nearly drown.” You said. Tomorrow you get to shower with the OT assistant again. You groan at the thought as you tell me.

PT was good but no stairs today. You leg brace was adjusted a little. It was given a little angle so your leg won’t buckle. That might make stairs a little easier.

We spent a long time on the phone talking about the first day of your recovery. The day of your surgery. You wanted to know how I made the decision to do surgery. I think you felt that I must have put a lot of thought into the decision. I tried to explain that very little thought went into it. I just knew that I couldn’t give up on you. The children needed you.

I told you I asked the doctor what ‘reasonable recovery’ meant. Could you still be a Daddy with a reasonable recovery. At the time, I couldn’t think beyond that concept. Saying yes to the surgery was far easier then saying no. It was only afterward, while we waited to see you after the surgery, that I wondered what I was making you go though. But deep down I knew that surgery was the right thing to do.

Somehow I just knew.

Today you talked to a priest. You talked about forgiveness. The priest told you that God has already forgiven you. God has even forgiven you for not forgiving yourself. He said there would be a point in your life where you will know that you are forgiven. You won’t have to be told by anyone.

Somehow you will just know.

Tuesday February 23 – We are a Unit

The other day you asked me “What will I do for work?” My answer was: “You will work at recovery.” That will be a fulltime job. The hours will be long and it is going to be hard work, sometimes monotonous and the pay will suck but the payoff will be worth it in the end. There will be days that you don’t feel like it. Just like there were days that you didn’t feel like running … but you ran anyway.

Your work will become your passion.

Today at work, I had a client visit whom I have known for a number of years. I first met him with his little Corgi dog and now he and his wife have a little Westie. His wife has MS. It was and is a condition that affected both of their lives.

He asked me about you and how things were going. I told him that you were making a recovery but there will be a lot of adjustments for both of us. I told him that the adjustments scared me a little.

“We went through that sort of thing too.” He said. His wife had to accept a lot of things that she didn’t want to accept. All the way through it he would remind her “You don’t have MS … We have MS. We are a unit.” He tells her frequently that they would get through it together. So far they have.

Intuitively, I knew this, but I didn’t acknowledge it fully until I heard his words. He is so right. We are in this together. Your pain is mine and mine is yours. Your strength bridges my weaknesses and my strengths bridge your weaknesses. We are a unit. Some days we are a ‘hurting unit’ and some days we are strong.

We got an email today from Linda in NB whose husband, Marc - a marathoner and father to slightly older children, had a stroke for now apparent reason. His stroke was in April 2008. He is making a remarkable recovery. She has been following your recovery and identifying along the way with the worries and struggles that we have had. She has managed to send us notes of encouragement when it looked like we needed it and her timing has been God sent.

Today she sent an email that I felt you really needed to hear: “It's a shame Chris feels he won't be the same father he was before, because our kids have never expressed any concerns or regrets over this. They just go with the flow. He supports in different ways and they seem to have come through the whole experience, I believe, as more understanding of people with physical challenges. Hope things are going well. Tell Chris to keep up the hard work.”

I believe that Linda is right. Our children will be stronger and more empathetic people, as grownups, having experienced this time in their lives. They will be richer for having such amazing role models in their lives like you and Marc.

It was a great meeting with the local OT person. She is enthusiastic and has a ‘glass half full’ attitude. She is on-board with my thoughts that your conditions is regressive not progressive. Chances are things will get better not worse. We need to plan for safety and for your care but we don’t want to remove the motivation to work at getting better.
She has been an OT for a number of years. I suspect she has good gut feelings about her patients. I think you will like working with her.

We have a four level split house. Together we tour the house and discuss stairs and ramps; beds, toilets and bathtubs. We even look at the kitchen briefly. She takes measurements and asks lots of questions. She thinks that a stair lift or two or three (one of each set of stairs) would be workable although the left neglect is a bit of a worry.

She asks about your insight and judgment ... an area that isn’t easily assessed by a stranger. I tell her that by nature you are a cautious guy. ‘Safety first’ is your rule and I don’t believe that the stroke has changed that. If anything you are a little more mindful of injury. But the left neglect isn’t covered by your rule. If you don’t knowledge your left how can you apply safety rules to it. This will have to be a learned skill. In the meantime, we have to protect you from injury.

She is going to come back next week with a guy. A home care appliance guy from Lawton’s Drug store. He is going to bring examples of things that we can install to make life a little easier and simpler for you.

You did stairs today! I couldn’t believe my ears when you told me. I know what stairs you did. In the PT room there is a staircase that goes up 3-4 steps. It has handrails on either side. A few weeks ago I watched an older lady who was an amputee walk up and down the steps. As you describe the effort you put into it, I could imagine you climbing these stairs. You felt it went well. But your PT is a little worried about your leg buckling. She feels that if the leg brace was adjusted, then you might be able to do steps a little safer. She is going to get the OT to look at the brace.

“My contribution to the family will be to do stairs.” You said proudly. “First stairs … then a I’ll get on a bike!” I express some concern about a bicycle. I picture you out on the road with no left field vision. A huge blind spot – a recipe for disaster. You are picturing the stationary bicycle to start. “I am pissed off – I want to get some independence.” You said.

I remind you what the local OT said. “When Chris gets home – the first weeks will be difficult.” There will be challenges, upsets and reminders of what you can’t do anymore. The first weeks at home will be a reality check for both of us.

You agree with this prediction. “I’m in purgatory right now but I will work my way out of here any way I can.” You reply.

When you get home, you said you want to buy me a special gift. Jewelry or something like that. I don’t especially value jewelry but the idea is important to you. I am more interested in getting you home and getting our family back to it’s ‘new normal’. Presents can wait. To pacify you, I make a deal. “When you get home and have an entirely great week, then you can get me a present.”

Whatever we get or do it will be together … because we are a unit.

Wednesday, February 24, 2010

Monday February 22 – Rant the Worries Away

Martha visited you early this morning. You had breakfast together. “I rant to her until she has to go so I then I have to stop the rant.” You said. Ranting and letting go of your worries and fears seems to be the best medicine lately. Once you put a concern into words, out of nowhere, some kind supportive person allows your words to fall on their ears and they help you throw the worries away. It seems that once you verbalize your fears, you are able to acknowledge how unimportant they really are. Today, it was Martha, last week it was your Mum, before that the nurses, OT and PT.

Tonight, you shared your latest fear with me. You fear that I will leave you for another man ... someone who has been there for me through these past rough months. “Yeah, I might do that, but I won’t have to leave you to do it because you are ‘that man’. We will help each other through this.”

Even though this sounded like a bad movie script or a rather sorry country music lyrics … it still makes you feel better. When you feel good … I feel good.

Last night I talked with you about getting a weekend pass for next weekend. I am on call and can’t come to the city to visit you. You asked the OT what she thought of the idea. She is concerned about a weekend pass. You felt that she is specifically concerned about your safety doing transfers and getting into the house. Of course, with me on call, the weekend will be unpredictable. I won’t know whether I will be called in to see an animal or not. Typically, February isn’t a very busy time, but there really is no predicting it.

You respect the OT’s concerns. You have gotten to know her and feel like she is a concerned friend. I appreciate that she is very safety conscious and has to be. Your left neglect is a big safety issue.

I had a call from the OT who works out of the local hospital today. She is coming to do a home visit tomorrow. Among many things, she is going to help us plan what we need to do to facilitate your homecoming.

I am a little worried about what she might say. Past experience has shown me that when my anxiety increases … then is usually a good reason. I guess I’ll have to wait until tomorrow to find out. You are a little worried too. You want me to call you as soon I can after she sees the house.

Sunday February 21 – Counting the Days

This morning you suggest that we should have a regular family Sunday meeting. To make a plan for the week. “A plan for what I want to achieve for meals and other jobs.” You want things that allow you to develop interests and feel like you are contributing to the family’s well being. A lot of what you need to do in a day should be oriented towards facilitating your recovery. A carefully planned day that allows you to work the parts of your brain and body that need the extra help and attention.

It has been suggested to us that you will need supervision while at home. Neither of us know what this means exactly. A lot of it has to do with the fact that the left neglect makes things unsafe for you. If constant home care is going to be a fact then we should make the most of the people power and use their time to keep you on track to sticking to a recovery plan. A plan with daily, weekly and monthly goals.

This can be a plan that extends to the whole family. Sunday can be a family goal setting time. As you talk about this I can’t believe my ears. The words ‘plan’ and ‘goals’ are music to my ears.

Slowly the thought is entering your mind. “Why me? Why did the stroke have to be so severe. There are all sorts of stroke survivors who suffer far less then this.” This is true, currently two of your three roommates are walking after their stroke. Of course you may not see their true losses as easily but all you know is how your loss feels. And it hurts.

“I just want to walk, to run, to play with the kids, to swim and bike. I just want my body back.” This is so hard to hear. It reminded me of the time Juanita and I talked on the phone shortly after she lost her first baby early in her pregnancy. We were all so excited about the new life in the family and Juanita wanted to be a mother more then anything. She said weeping over the phone “I just want my baby back.” Those words still tear at my heart when I think about them. Your words rip my heart out.

In the afternoon, Martha came over for a little visit. While she spent time with you, I took the children for a swim. They had fun in the pool. It was a good weekend with all four of us under the same roof. But Sunday afternoon came and went too fast. I am beginning to dislike Sunday afternoons when we always part. I am looking forward to the Sunday where the afternoon flows to evening and evening to bedtime and we are still all together … under the same roof.

Earlier today, Quinn was counting days again. His part-time passion. He was counting days to Tara’s birthday and his birthday and to the Cabot Trail Relay race. Tonight, at bedtime, Quinn asks, “Is Daddy is going to be home in one month?” “Well, we don’t know for sure, but he will be home about then … maybe only three weeks!” Quinn pauses, smiles and says, “That’s only 21 days. That’s not much!”

Saturday February 20 – Laundry Angels

I was right. The morning was better. Your tone shifted from feeling like a joke to feeling like a good person who wants to make sacrifices for the children and me. “The stroke was completely out of my control …” Your thinking is shifting from feeling punished to being a victim of a random event.

Quinn brought, with him this weekend, a magic show kit that he got for Christmas. While I make breakfast, you help Quinn figure out a trick using a fake thumb. You are quite capable to problem solve with the children. I over hear your conversation from the kitchen. When I stick my head around the corner, Quinn quickly defers to me to help. I realize that if I make a point to stand back then they will go to you to get help. If I can do this, then your relationships the children will regain the strength that it had with time.

I can see other benefits to this strategy. The children will force you to try things and experiment and learn new things or at least learn new ways of doing old things. The children will be your motivators.

Your new leg brace is a pretty turquoise with the number 29 on it in several spots. There is definitely a learning curve to putting it on. I have not mastered it yet. There is a lot of grunting … and some swearing involved when I attempt it. When I finally get it on you, I realize that this appliance will be something that you will need help to put it on.

I felt a bit overwhelmed yesterday while packing up your things for the weekend. There was a week’s worth of laundry to do in your closet. I packed it up into your bag yesterday and dragged it back to Lenore’s apartment. I had thought that I would do the laundry there over the weekend. When I went to start the laundry, I noticed that the machines aren’t normal coin machines. No, that would be too easy - these machines need ‘smart cards’ – great what am I supposed to do now? I think to myself. I picture us spending the afternoon at the NSRC doing laundry because that’s the only place I will be able to find a machine.

I refused to give up hope. I waited until the apartment office was open. I asked how I could get a card. No cards are available the two ladies who work in the office say. “Are there any laundromats handy to here where I can take laundry?” I ask. I explain briefly about the mountain of laundry and that we are staying at a friend’s apartment. One of the ladies remembered me from last fall when I came by to get the keys to the apartment. She asks how you are doing and I let it all out … again to two complete strangers. It seems easy to unload to strangers. I don’t feel like I’m dumping a burden on a stranger compared to how I feel when I vent to a friend or family member or you.

I tell the ladies, tearfully, about your stroke and how you are on your first weekend pass from the NSRC. I tell them how there are lots of challenges for us in the future and that I’m scared. When they see that I’m a basket case, they ask how you were emotionally. I tell them that I believe that you are stuck in the anger and depression stage. Your have a lot of despair and worries about being a burden. You don’t know if you can be a good father.

Ironically, they both grew up with fathers who were physically challenged in some way. Both of their Dads were angry men who never seemed to get past their anger. One was in a wheelchair before ‘wheelchair accessibility’ was a buzz word. He had lots of reasons to be angry. I mentioned how my ability to cope was very intimately involved with your ability to cope. When you are down, I’m down. I can’t seem to control my feelings any more then you can control yours.

They supplied me with a seat, a box of Kleenex, a drink of water and some very sound heart felt advice. “Don’t worry.” They said, “Children are very resilient. They will over come this and they will be more empathetic people because your husband is in their lives. You are important too. You will give the children balance to Chris’ feelings. They will learn from both of you.” With that said, they set me up with a smart card for the laundry machines and sent me on my way.

Who would have thought that one could meet angels while trying to do laundry? These marvelous ladies came into my life at the right time with the right message.

While making lunch, you get sad and start on the negative talk again. “It is an injustice – I should have died.” You sob. I don’t want to hear this but you need to say it. It’s part of the healing process. I tell you that there will be something good that is going to come from all this. We just have to believe it. “I wish I could look in on our lives in five years” You said “I need to know that will be all worthwhile.”

I know you will make it worthwhile. Your marathon man mind is still waking up and hasn’t kicked into gear yet. I know that once that spirit wakes up then the possibilities are only limited by our imagination – You will make it all worthwhile.

After lunch, we get outside. Our first trip outside together as a family since the warm days in August. The sun actually shone for a little while. We wheeled down the street to the Freak Lunchbox. For me, the freak lunchbox holds no attraction. ‘Unless it’s chocolate, it’s not worth it’ is my motto. You are more nostalgic about the candy store. You are in search of ‘Bottlecaps’ … ideally rootbeer flavor. I felt like a parent to all three of you as Tara and Quinn ask to buy this and that. “Each person can have one thing.” I announce. You all looked a little disappointed but accepting of the decision.

As we try to navigate about the small and very crowded store with the wheel chair a little girl, about four years old, looked at you and asks me “What happened to him?” She was with her father and I think that she couldn’t imagine her Daddy being in a wheelchair. Her eyes were wide with wonder and innocence as she asked. “My husband had a stroke and his brain and body don’t work very well right now, but he is getting better everyday.” I reply.

You ask me what the little girl said. I told you. “What do I tell people who ask me what happened?” I tell you to say what you know. “You had a stroke, nearly died but you lived instead and you are going to keep living.”

With candy in hand and mouth, we set of down the street to the Discovery Center. I explain to you that this is an old haunt of the three of us Tara, Quinn and I spent many hours wondering about between visits to you on the seventh floor of the QE2 Halifax Infirmary. “They even had a special brain exhibit during the time that we visited. It helped pass the hours because at that time you slept a lot.” You have a hard time imagining what life was like for us then. I try to recall it but it seems like it was a lifetime ago.

On the third floor is a maze. It’s narrow and convoluted but it turned out to be great practice for wheel chair maneuvering. They should have this set up at the NSRC.

We make our way back to the apartment by way of Scotia Square where we stop to buy batteries for the electric cannon that you and Quinn want to assemble. Another Christmas gift.) The phone rings and its Martha!

Martha, your best friend, is in town for a few days to attend a nursing meeting and wants to met up to catch up. She says, “I was just up at the rehab hospital and learned that Chris had a weekend pass … so where are you?”

“We’re still in the city and staying at Lenore’s apartment. Where are you?” “Well” she says, “Right now, I’m in this mall by a Tim Hortons and there is a water fountain in the courtyard – I think it’s at the corner of Barrington and Duke Street.” She said. I laughed “We will meet you there in about 3 minutes!” We were just down the hall and around a corner at the bookstore when she had called!

Martha takes over the pep talks. She starts with your role as a parent. “You can talk the talk and you can walk the walk – both literally and figuratively.” “The walk won’t be pretty.” You say. “Nothing is pretty when you first learn it.” Martha says, “But you will show them that you can do it.” Everything is going to be hard work. But that’s parenting and that’s recovery.

We discuss the house and how to arrange the house to accommodate you and allow for a good recovery. She agrees with my thoughts. We want to make it safe for you but we don’t want to make it too easy. Challenges will force recovery. You suggest rip lines form one floor to the next! That might not be safe but it could be a lot of fun to have rip lines throughout the house.

As we walk back to the apartment, we stop at a little pizza place and make on order for dinner. You try to read the menu but you get stuck on the columns. The left margin eludes you and it is a frustration. A little later as we wait for the elevators you comment that it’s odd that both elevators are on the seventh floor.

I have a hard time understanding how you see. It seems very odd to me that you can’t distinguish columns that are millimeters apart but you acknowledge elevator lights that are 2 meters apart. The OT says that it all to do with ‘scanning’ and learning to scan your world with intent rather then rely on your peripheral vision. Right now you seem to need to be cued frequently to find things.

This observation brings up the ‘never drive again’ rant. At dinner, Tara and I discuss the value of the word ‘never’. She thinks that never is OK so that you don’t get disappointed. I point out that ‘never’ is a very discouraging word. To say “maybe some day” you can do this or that leaves you open to hope. Right now we all need to maintain hope that things will change.

One thing I know for sure is that things will change. Either you will get better or we all will learn to adapt to our new life. A change in your physical condition or a change in our emotional response. Either way – there will be changes.

At bedtime there is more late night talking. Negative talk. Finally I get you to go to sleep. I hope that this will stop soon. Emotionally, I can’t continue to absorb all the negativity from you at bedtime and get a good night’s rest.

Friday February 19 – A Weekend Pass

After work today, I pack to go to Halifax. This is our big weekend together as a family at Lenore’s’ apartment. We are all looking forward to it. I look about the house for a large gym bag for your things for the weekend. Your suitcase is too big. The Honda Fit can barely get the wheelchair in the back, let along a large suitcase.

I finally locate an old sports bag downstairs in your man cave. It contains all sorts of old running shoes and cleats and balls. Nerf footballs, baseballs, soccer balls and an assortment of other balls. All big reminders of your BS life. My heart gets heavy when I think about your life before the stroke compared to now.

This weekend is a prescription that I am writing for you as your wife. A prescription for the four of us. We need to have some ‘normal’ time together without a hospital roof over our heads.

When we get to the NSRC, you are anxiously awaiting our arrival. Juanita and Wayne are there with the children. Maddie is happily running about the room shamelessly topless. Thanks to Wayne, you were enjoying a few eggrolls. I get you packed and we pick up your drugs along with the instructions. You are still on a lot of medications. Pills for all occasions. Bowel, bladder, pain and mood.

Finally we get settled in Lenore’s apartment. The first thing we do is see whether the bathroom is workable with a wheelchair. After some discussion and planning, we figure out a way to transfer you safely to the toilet.

Yeah – You passed the toilet test! You get to stay.

Quinn wanted to tell you about his experience at school today. He said he was bullied. An older kid asked him if he could have the big snowball that Quinn was making, and then proceeded to get his friends to smash it up. He proudly tells you all about it and how he told the teacher. You were right on cue. You told him that he did the right thing and that bullies only have power if you give it to them. Not telling a grownup gives them power, telling a grownup takes it away.

It was a good parenting moment. The two of you end the discussion with a modified wrestle session. Your one hand against both of Quinn’s. Quinn is impressed with your one hand wrestle maneuvers. “Daddy is strong and fast.” He says squealing with laughter.

Maybe you won’t need that ‘martial art’ training after all.

We cuddled up on the sofa together. To sit beside you on the sofa felt like a vague memory of the past. It almost felt foreign to me … until you started to rub my foot then it felt like we were transplanted back in time… It felt great.

You talk about your inability to concentrate. “I can’t stay interested in things for long.” I point out that you played crib quite well. “Yeah, but that was really hard.” You said. I think that your ability to concentrate is another thing to work on … like exercising a muscle. It will take time to improve but daily exercise and pushing the limits a little bit at a time is what you need to do. We need to identify things that you can do mentally that allow you to force your concentration a little longer. Some days will be easier then others, just like when you trained for running. Some runs were great and others were hard work and required a lot of staying power.

Your ability to concentrate will improve … in time … in waves.

We go to bed early for us but late for the children. I’m tired physically and emotionally. You are talkative. You express your worries that I will not be happy with you and that I will want a ‘real man’. You want me to leave you. “I’m a joke,” you say.

I am tired of the negative talk. I don’t know what to say any more. While listening to you, I realize that as you get tired, the negative talk gets worse. Late night talking isn’t good for either of us. Finally, I convince you to try to get to sleep because things will seem better in the morning.

Things always seem better in the morning.

Monday, February 22, 2010

Thursday February 18 – The Power of Prayer

Tonight’s phone call was pretty upbeat! You had a good day. You had a good long talk with your Mum. She has been so despite to do something… anything. Your Mum is a nurse and a naturally nurturing person, for her to be stuck in Ottawa and recovering from her own major surgery has not helped her frustration at all. The two of you are close and I know her words of support helped you. There is an obvious difference between tonight’s phone call and other calls.

After her call to you, she called us and we shared our ideas how to help you. She said yesterday, she wrote a letter to Dr. Mendez, the neurosurgery department head, who also does stem cell research. I am glad that she has written him. She sent it by registered mail. I had planned to write a letter to him but I have been bogged down in the day to day things and I can’t seem to muster the inspiration to write an eye-catching letter.

You walked with the cane again. You felt it went well. You attribute the success to your PT who, you feel, gives great instructions. I think that some of the credit should goto you. You have focus and listen well.

You are in a rather spiritual mood tonight. I mentioned to you how a friend, Mike, who follows your progress in the blog reminded us of the verse ‘Footprints’. I didn’t have to read it to you. You know it well. “I think that I will try to pray.” You say. I speculate whether God answers all prayers. True to form, you quote … of all things … a MASH episode. “Sometimes the answer is no.” “Or” I ponder “Maybe you are just asking the wrong question.”

I know a lot of people believe in prayer and have been praying for you. I think that the power of prayer is the strongest if you believe too.

Sunday, February 21, 2010

Wednesday February 17 – Planning for the Weekend

My early morning dream was odd. I sensed that was to take place in the future. We were out for a meal in a restaurant. It must have been a special occasion because, in normal life, we rarely go out to eat. The four of us were there, so were Maddie, Farley, Erik and Neeson. The children were all playing and having a good time and you were playing with them. The children were giggling and everyone was having a good time. It was obvious to anyone witnessing this that the children saw you in your ‘funny parent’ role.

The best part of the dream was that I could see that slowly the children were convincing you that you are a parent ... a funny caring loving parent. A Daddy and an uncle. I dreamt that I wrote about this in the journal and someone commented back in the blog about my observations. “Of course the children will see Chris as a parent. They don't see disabilities they see a role model.”

It’s funny how the subconscious mind works.

I got a phone call returned from a stair lift company in Ontario. It sounds like a do-able idea and a much more attractive idea then moving or doing extensive renovations to the house where we may never recover the expense. If at some point, I hope that you will outgrow the need of a stair lift and we could sell it.

While I appreciate the OT’s safety concerns, I am very aware that ‘aids’ can also create a dependency and not facilitate recovery. While ‘aids’ enables a disability in a positive way they also enable in a negative way.

If true independence is not part of your immediate future and you will need assistance for most things then why not use the assistance to it’s maximum potential for recovery.
‘Home care’ doesn’t have to have to be defined by VON or other agencies. ‘Home care’ can be defined by us. It can be integrated with PT and OT and all the other T’s (therapies).

After the phone call, I try to do things about the house one handed. It’s hard and takes about three times longer to do anything. I expect there is a learning curve and one gets more efficient at things with time. OT and home care will have to be integrated.

It’s the first official full snow day of the year. Usually a time to rejoice when you are 7 and 9 years old. The children were excited and both woke up early! I am always amazed that their early wake up days is always on weekends and now apparently on snow days. Why is that?

Quinn wanted to drive to Halifax to visit you. I started work at I pm today so I had the morning free to do things, At least that’s what I planned until there was no school.
Instead we stayed home and played with some of the undiscovered Christmas things that Tara and Quinn got. That lead to sibling spats and then me yelling and getting crankier by the minute. By the time I got to work, I was in a real huff. Joye could tell right away that I was having a bad day. Apparently I’m a lousy actress. I hate that I lose my cool and vent my frustration and feelings on the children. I want to make this time easy on them not harder.

I caught my breath – it’s just a bad moment not a bad day or a bad week or a bad month or … No, it’s just a bad moment. I say to myself. Children are too resilient to be damaged by a bad moment … I hope.

During our nightly phone call, you talk with Quinn. He tells you about his favorite things in gymnastics. He has a meet coming up soon and he is pleased that he is starting to figure out the pommel horse. You talk to him about the things you are figuring out … mastering transfers and walking. Quinn’s response to this news is an ‘over the phone ear tug’. He misses you.

Tara gets on the phone with you. As she talks, she paces around and around in a tight circle. This is something you would do when you talked on the phone. You tell Tara about your new leg brace. They cast your leg to get the shape right. You asked for it to be turquoise … Tara and your Mum’s favorite colour with a 29 written on it. The OT thinks that she can grant your wish. I can tell Tara likes this idea by watching her. She starts to talk faster and faster. The faster Tara talks, the faster she walks in the circle.

I tell you about the research that I did on the stair lift. You are a little shocked, at first, with the idea and possible costs. In the long run, if it is a safe option, the cost would be considerably less then moving or renovations.

I also mention to you about the idea for a weekend with us at Lenore’s apartment in Halifax. Her apartment building is wheelchair friendly. The only area of difficulty would be the bathroom, but I think that there will be enough space for your chair to fit and me to help you transfer to the toilet. If we can’t do it, that’s OK, then we will just take you back to the NSRC for ‘real’ toilet business, everything else can be done with a carefully positioned bottle. This is a skill that you have mastered over the past four months.

You said that you would ask the OT and PT about the weekend. I said that I would email the OT. Between the two of us we will make this happen. The weekend after this weekend, I’m on call and possibly won’t see you until the next Monday. I want to make this weekend count.

Tuesday February 16 – A Plan Is Forming

While walking Quinn to school, he said out of the blue “I don’t want to move.” Gosh, I thought, he has been thinking about this since our talk last night. We talk about the difference between a house and a home. “Who we live with is much more important then where we live.” I hope that if I can plant that seed with him then he can plant it with you. If we did have to move and you could see that the children like the idea then you would feel better about it. Maybe this will help you to embrace the idea.

At lunch today I called a lady who I know from work. She and her husband are both disabled but have the fortitude to continue to live independently in their own home. They are a fairly young couple who was recently married. She has had a lot of experience working with OT’s over the years. She knows a good one when she sees one. She had some names to pass onto me.

We talk at length about her experiences with home care and what has worked well for her and her husband. She is a wealth of knowledge. I take heaps of notes as I talk to her. I mention that changes to the house may be needed. She even had suggestions about who to get to do the work.

A plan is starting to form ... S always … a plan gives me energy.

The nightly call to you covered a lot of things. The OT has been suggesting ideas of what we could do to our house. Neither of us like the ideas. It seems to me, extensive renovations may be more then we will need. In all likelihood, your condition will get better. Not worse. Why plan for the worst? Not only are renovations expensive but they would make the house difficult to sell later. We wouldn’t redeem the cost. We need a better solutions then renovations or moving.

The home care coordinator was in to visit you. You were a little unsure what she discussed with you but you told the lady that she should talk to me about homecare.

Today, you got measured for a leg brace. This brace is discrete and will sit inside your running shoe. It will fix your ankle at 90 degrees. Once your ankle is stabilized, then your knee will be stronger for standing. You hope to have it by the end of the week so we can see it.

In PT, you did more practice with a four-point cane. You are starting to imagine what life will be like at home. "It may take me all day to make supper.” You say. “I don’t care, I am totally there to make you guys happy.”

Tonight after our call, I think about alternate ideas for our home more accessible for you. I start to do research for stair lifts. There are many options out there. I think if I can do some homework, then maybe I can sell the idea to your OT and the team. I recognized that a stair lift may be dangerous for you. The left neglect is a safety issue, but if you have home care then there will be a built in safety factor.

I spent the evening checking out good stair lifts and their special features.

A plan is forming ... You will be home soon and we have a plan!

Thursday, February 18, 2010

Monday February 15 – You Focus on Recovery and I Focus on Being an Advocate

Today is the day of the family meeting. I prepared for it last night. I made a list of 26 questions. I am confident that the tone of the meeting will be positive and it will be about a plan to get you home. A subject dear to my heart.

As I drive to Halifax, my mind races over that queries that I have. Among them is an observation that has slowly gotten my attention. I have noticed that you seem to lack the concentration to focus on things – whether it’s TV or sports on TV, a movie, reading or being read to – your concentration time seems to be 15-30 minutes. I add this to the list of things to talk about.

I get there just in time to meet with the social worker. She normally works on a different floor but has come to meet with you for the first time. You are just getting to know each other. She has lots of smiles and good encouraging words. She says that now she has met with you, she will come to the family meeting too.

Today you and your PT put on a show for me. First you work on transfers from the chair to a platform bed. This is a more challenging transfer because there is no pole or handle to grab. You must push your body up with your right hand on the armrest and pivot and rest your hand on the side of the platform to complete your landing. You do it well with minimal help from your PT. In fact she is really there just to help you incase you get into trouble, not to help you do the work.

The PT student finished last week. Your PT felt lucky to have a good student who helped her do so much more. Today, you have the PT to yourself. She tells you that your transfers are getting better and better.

Your next trick was to stand between the parallel bars without assistance. You stood and your PT counted out aloud the seconds. She got to 60 … twice and said “That’s good, I know you can do more.” You teased her and suggested that we buy her a watch. She smiles and says she prefers to count because she counts like a ‘real Canadian’ ... the counting continues as she sucks her breath in. The two of you make quite a good show.

For the grand finale, you walk. At first you walk with the aid of the parallel bars. Your left leg kick is much stronger. “Kick and straighten and step.” She says “Very nice.” I noticed quite a difference since my last weekday visit 2 weeks ago. I am almost choking up with tears when the PT says, “Now don’t get me started.” She is pleased with your progress too. She has been somewhat isolated from your progress because the PT student did the walking with you. The last time she walked with you was last Tuesday – six days ago. She sees a big improvement with a real hip swing.

After PT we went to Timmy’s to celebrate a great PT session. I even let you have 4 sugar with your coffeemate. Which is a lot of sugar since 1 tbsp of coffeemate has a teaspoon of sugar too. At least this way you don’t get as much caffeine. By the time there is coffeemate and sugar there is very little room for the coffee.

We have a great talk about woodworking. You had an idea while you were working with your PT for something that you could make. Something that you can imagine making with one hand. The thought gets you quite happy. Then you start thinking about other things you’d like to do. “Maybe I’ll take up Martial art.” “Which marital arts are you thinking about?” I ask … falling for your set up. “Oh, I just want to take a martial art because that’s for one hand, martial arts is for two hands. A art is much harder, you have to be twice as fast with only one hand!”

I wish Tara could have heard this.

After lunch, Don from Truro visited. The two of you swap sports related topics back and forth. You joked about a lot of things with him. You even offered him a hip since “they didn’t take it away from me in August and I’m not using it now.” He reminded you that it is pancake supper tomorrow. You pondered for a moment about what to give up for lent. He reminded you that you already decided that. “Smoking! Congratulations on being smoke free for 6 months.” At the end of the visit, you decide to complete the daily OT log. ‘One positive thing today was: Don came to visit.”

Finally the family meeting. Despite the positive talk that I have tried to keep in my head, I was still nervous about this. We met in a conference room. The OT and PT are there along with one of your favorite nurse, your new social worker, your doctor (a physiatrist), her resident and his medical student. It starts out formally with the resident making a report to us. I start asking questions and the doctor steps in with answers.

You have a condition called Hand shoulder pain or Complex regional pain syndrome. This can become a chronic pain condition. Thankfully, it was identified shortly after you came to the NSRC and the medication has helped.

We talk a lot about the left neglect. The degree of neglect is severe. Severe neglect suggests a poor prognosis for recovery. I ask if that is a problem that will rewire in time. The doctor carefully said “It’s possible that it can improve somewhat ... but if we were to see someone make a complete full recovery, we would have seen it happen before now.” She reminds us “rehab is a long process, there is nothing magical about the rehab center – we have a good team that works together with lots of experience – but recovery happens after people leave rehab too. It’s part of a continuum.”

We talked about discharge dates. March 11th is still tentatively your date but there maybe some goals that need a little more time and that can be arranged for.

Your PT speaks of her experience with your case. She comments on how a prognosis is determined. It’s based on a few things: severity, how you have progressed since your stroke and your age. Your stroke was severe but you have made slow but steady progress and you are young, relatively speaking. She is somewhat hopeful that you will be able to walk with a cane. What really impressed her was your ability to focus. Paying attention and focus on the task on walking. This is a good thing that allows for more progress.

She mentioned that a brace is going to be made for your leg to allow walking. The doctor added that botox injections would relax the muscles and allow a better fit for the brace.

OT reports that transfers and self-care are the priorities for her. The left neglect is has been a challenge to incorporate it into making the transfers safe. She is also looking at our home and how to make it safely accessible to you. At the end of her presentation she and the social worker commented that there would have to be some home care support in place to get you home.

The doctor asks us what our plans are. “Home home home… we want to transfer to home not another hospital.” A local OT needs to be tracked down to do a home assessment. Wheelchair has to be ordered and grab bars and super-pole installed to make the bathroom accessible. The social worker suggests that Homecare Nova Scotia would be a resource for us.

A psychologist has been assigned your case ...Finally. She is to see you sometime this week. Your doctor is confident that talk therapy will be very helpful. Apparently, the NSRC has been under staffed because there is a maternity leave that wasn’t being covered. Seems odd no one could be found in time to cover a mat leave. I suspect that the gestation period of psychologist is the same as the rest of us and that they had at least a few months warning that there would be a mat leave coming up.

If one more person suggests to me that the inadequate manpower is because of funding problems, I think I will scream. I think human health care management people should work in a veterinary hospital for a year. Then, maybe they can truly appreciate the creative solutions that we can come up with when things boil down to ‘funding problems’.

We talk about private insurance and what that might cover. Since the public system may not be very helpful in some areas. I can see that we will have to budget things carefully.

I’m concerned about the left neglect. It seems like a stumbling point for further recovery. I ask about therapies for left neglect. There wasn’t a lot of response about this. I mention about the gossip that we heard that there was a left neglect study to do with video games to help with left neglect. “Oh yes, that’s Dr. Eskes. She is a neuropsychologist who is doing the left neglect wheel chair study that you are part of.” Coincidentally, we are to meet with her later today to go over some of the results of the wheel chair study.

We talk briefly about the ‘inappropriate language’ issue and how it cuts close to your natural personality. Your intent is to be funny and in any other setting what you say now would be funny, but the staff at the NSRC are very sensitive to ‘inappropriate language’ and the message is not received with the intent it was offered. I just wanted the team to know where your humor comes from and to lighten up.

Humor has always been one of your coping strategies. The after-stroke you is no different.

After this topic was put to bed, they asked you if you had any questions. “Just for a little morale boost, can we go over the advantages of having a catastrophic brain bled?” This was followed by nervous laughter from around the table. “You got to meet all of us!” the social worker chips in. Good food and lots of flowers are mentioned. “Actually” you said “We have a flower deficit.”

Your doctor nailed the answer; “You have found a wonderful support group with friends and family and although it’s hard to imagine, you have come a long way.”

After the meeting, the OT talks to me briefly and left me with the distinct impression that she believes you will need constant care when you get home. The severe left neglect will be an ongoing safety issue. Home support will be a big part of our family life. She also suggests that we make some major house changes to overcome the stair issue. Oh boy, more realities to swallow. I don’t know how I’m going to sell these concepts to you. You didn’t want to be a ‘burden’ … now not only will we need a sitter for you when I’m not home but we may need a new home!

When Dr Eskes and her student arrive to go over your test results, they find my head buried in your lap. I am feeling a little overwhelmed with the outcome of the meeting. I need time to process the information. I need time to make a plan.

Planning is my coping strategy.

Dr. Eskes’ research assistant met with you a few weeks before and the two of you did some tests to assess your left neglect and cognitive and memory skills. The results were mixed. Although you have a fair degree of neglect, you seem to have good cognitive abilities and fair memory skills. The tests were fairly simple like count backwards from 100. You said proudly “I could count backwards from a 100 by sixes too!"

There was a word memory challenge, which was a little harder for you. You quickly defended yourself by saying “If the words were more interesting to me, like Rod Carew stats, I would have remembered.” Dr. Eskes had to agree with you on this especially after she overhears you tease the research assistant about the time you spent with her doing the tests, recalling details that the assistant had forgotten!

The overall impression from the tests was that your neglect seems to be fairly confined to the domain of your left side. Dr Eskes says that it is common for left neglect patients to have other losses. Particularly a loss of focus.

There’s that word again … Focus. The PT said you had focus and now the neuropsychologist says that you have focus. I thought you had less focus. Perhaps I am looking at this the wrong way. The before-stroke Chris had great focus and the after-stroke Chris has less but apparently a lot more then other stroke patients.

Focus is good. Focus is essential for a good recovery. We will capitalize on your focus.

The drive home was difficult. Another thought filled hour and a half of driving time. My head was so full, I could have driven to Ottawa and it wouldn’t have been empty yet. The emotional swings – up, down, sideways, back and forward flips … even inside out. It was a real roller coaster ride. The realization that this was just another roller coaster ride and tomorrow there will be another and another. One ride after another. I can see no break in sight.

Self pity shrouds me as I drive to Truro. I think a naturally happy person gets to live in roles of their choice. You are born as a son, daughter, brother or sister, but you get to chose other roles - mother, father, husband, wife, friend.

I want to be defined by the roles I was born with and the roles I choose to have in my life not the roles that were forced upon me. You are a stroke survivor and I’m your advocate. Lately, that seems to be my preoccupation. I don’t like to play that role, but if I have to play it … I’m going to do the best that I can.

As I leave the city, I get a phone call from Tara. She isn’t feeling well. I told her to forget the gymnastics today and I would pick her up in an hour. By the time I got to Truro she was feeling better and is playing happily with her friend, Hannah. As they play, I spill my feelings out – all over Ann (Hannah’s Mum who looks after the children on Mondays). She listens to my worries, fears and sorrow. She offers me inspired stories along with healing and thoughtful talk. She helps me limp along this bumpy part of the marathon. She kindly draws me towards God in prayer. “God is waiting for us” she said “God is patient.”

“God show me the way and lighten my load.” She caught me at the right moment.

Maybe this is just one more level of letting go. Letting go of the things that aren’t really that important. The house is just a house. We make it a home. We had planned our house selection based on our children’s needs. The move into Truro was for them. When we moved to Truro, the house was just a house. We made it a home.

I tell the children about the difficulties with the stairs in our home. “We may have to move to a different house.” Both of them were immediately worried that meant that they would have to change schools and communities. “No, no we wouldn’t move far. We want very much to live near where we live now. Near the schools and near the animal hospital. The car is quiet on the way home. None of us want to move.

I wished a sign would come to tell us we will be OK.

When we got home, an email was waiting. It was from a friend whose husband had suffered a stroke and lost him a few years later to cancer. There’s my sign! She has the amazing strength to reach out to me and hold my hand after she suffered the loss that I feared I would have six months ago.

Things will be all right. I still don’t know what they will look like … but they will be all right.

It is because I feel that I have to compensate for your losses, I have so been busy dwelling on losses that I haven’t taken time to appreciate the positives. I would rather focus on the positives. Determination. Focus. Dreams. Future.

Wednesday, February 17, 2010

Sunday February 14 – Recovery is a Family Affair.

If the children got up early this morning, I promised them a swim in the pool. Lenore’s apartment has a small pool and the children love it. They would spend hours in it if they could. They have quite a complicated game to do with dolphins and seahorses and other magnificent sea creatures that they can communicate with in the pool if a special spell is said.

They were playing happily then suddenly Quinn becomes sad. He and Tara were playing and he pulled on Tara’s ear lobe. The ‘I’m sad and I don’t know why’ sign. He gets out of the pool while Tara puts the sea creatures to bed. I suspected that it had something to do with your dialogues from yesterday. Your doubts about being a good Daddy.

Quinn sits on my knee and we talk. We talk about the conscious and subconscious mind and the possibility that sometimes when one feels really sad and don’t know why; it’s because the subconscious mind is worried. “Your subconscious mind may send you messages in your sleep in the form of dreams or it may just make you feel sad for no apparent reason.” I suggested. Quinn thought that I might be right but he was still in an ‘ear lobe pulling’ mood.

As we pull into the NSRC and unload the car, Quinn’s gray skies brightened a bit and he said in a hopeful voice. “I know what we can do today.” By the sound of his voice, I thought he was going to say go to the circus, or Sea World or Disneyland. But he didn’t. He said, “Maybe we can get Daddy walking again today.”

Oh boy, I didn’t know what to say to this. “Some day Quinny, Someday Daddy will walk again.”

You start talking again about how you don’t know how you will be a father to the children. You can’t imagine what life will look like once you are home. I have a hard time imagining this too but for different reasons. You restate that the children don’t need you because I’m doing such a great job. Frustrated with your line of thinking, I cry out “I am not two people. I have hardly read to Quinn at all this year and I can rarely find time to guide him through his homework. They need you, I need you!”

After a moment to reflect these thoughts you say “I need the kids to make me feel human, to feel like a father.”

This morning Tara mentioned, when she was getting dressed, that she had a wart on her face. “A wart?” I said “Let me see.” It was a pimple. I told you about it. Together we broke the news that it was a sign, one of many signs, for puberty. She doesn’t believe us.

We played the Valentine’s day game that we started yesterday. We hid the love notes that we wrote throughout the whole fourth floor. With each note was a heart chocolate. Each of us wrote five love notes for each person in the family along with one for themselves. It was great fun. Tara and Quinn really got into it and had to help us find our cleverly hidden notes.

When it came to the challenge of writing something that you love about yourself, Quinn won. Since he is in French immersion and hasn’t been taught much English yet, his spelling was a little creative. Mixing up the English ‘e’ sound for the French ’i’ sound. His note was simple “I love Mi”. Tara is a close second. “If I want to stop doing something, I have enough determination to keep going.” I think you came in third place with “I have such a great family.” I stumbled through the challenge. The best that I could come up with was “I am a good organizer.”

When I asked Tara about her love note to herself, she said that she got her determination from you and her organizing skills from me. The fact is, I don’t particularly love that about myself, I like it …but it’s also a curse because I get so caught up in the planning and executing of a project that I can’t truly enjoy the process or the outcome. This game is an excellent example. Just one of the many life lessons that I have to learn sometime.

As the children play. We talk. Your guilt is revealed. “I’ll never be who I was, for the rest of my life I will have restrictions on how complete a person I can be. I hate that … I hate that I can’t make up to you the shortcomings from my previous life. I want to make things right – the stroke and God has seen to it that I can not make a full recovery and it saddens me and makes me angry. I feel very sorry for you and the kids. I will try my damnest … but I don’t know how much I can do.”

“That’s not God’s role. God doesn’t punish. God gives you strength. God helps you find a way. If you have faith that God will help you find a way then it will happen.” I said. “There have been so many signs that I have seen since your stroke that gave me hope – even when the day was very dark with despair … I saw signs. I still see signs that we will find our way to contentment and acceptance with however this will turn out. You have to have faith. The signs have told me that we are on the right track and that’s why I wanted to write the journal so you would see the signs and know what I know.”

“Your stroke was a random event – it just happened. It wasn’t because you smoked or lied to us about it. It was not because you were a bad person. It isn’t punishment. If God intended to punish you, why doesn’t he punish other people who done far worse things then being a closet smoker? Why is God punishing me? Why is God punishing the children? We didn’t deserve this … no one deserves this – it just happened. It was a random event.”

“God is helping us find our way through this journey. God has been watching us and see that we are good people who have real love for each other and God sees that we need help. We have been given signs to keep us going. The signs have kept me going. I want to pass the strength onto you.” I wrote about the signs to help you see them too.”

“Although we don’t know what life will look like later, the signs show us that you are on the right track to being a happier and better person then we were before. You have to have faith in the process. The process is about the recovery right now. This recovery process is for all of us.”

My mixture of logic and philosophic reasoning doesn’t seem to help you understand. At least … not yet. Your mind isn’t ready to embrace this approach. I suspect that your ability to process these feelings is impaired with the stroke. You share a lot of the same feelings with your parents on the phone. They are as confused as I am as to why you are so hard on yourself.

The irony of the situation is that your stroke has dealt you some big losses and the ability to process these losses is also impaired … that leaves you stuck in a very bad place.

Tara got quite distressed just before we had to leave. I’m always on edge when we have to leave, Tara dawdled and I got angry. She wanted some ‘alone time’ to think to herself but we need to go and you needed to fix her hurt. You were worried that her wanting to be alone and not talking will lead to secrets, secrets lead to lies and you feel that lies brought you this punishment.

All this talk made our departure even harder then it usually is.

In the car on the way home I let Tara be quiet for a while. Then she started to talk. Slowly at first and then faster and faster. She lets her bad feelings spill out. She is scared that you are different and that you aren’t funny like you used to be. “I just want my Daddy back. Daddy gave people the key to laughter and that’s what makes him so special.”

Verbalizing this helped her find her way to a plan. Like me, she needs a plan. Her plan evolved quickly. “I need to write about it, maybe a book or … a song and a poem. I’ll compose a song and write the words and sing it.” That will be her gift to you to help you heal.

Now Tara is full speed ahead – talking fast and furious and loud. She is excited and when I said that I thought Daddy’s new addiction was a talking addiction, she went into orbit with about a 3 minutes monologue without breathing as to way that would be bad because she is the one that needs to talk. I can picture our family’s future. You and Tara competing for talking time and Quinn and I becoming very good listeners.

At bedtime we call you and I let you know how things were with Tara and the two of you had a good talk. You both felt better after. As we talk, Tara started to write her song for you. We talked about tomorrow. Both of us are a little apprehensive about the meeting tomorrow – we hope it is about the plan for the future rather then about acknowledging more losses.

Tuesday, February 16, 2010

Saturday February 13 - You are a Daddy

Tara and I didn’t sleep well. Poor Tara was feeling sick. Finally after being restless with a headache, puking and fainting, she felt better. Fifth’s disease is going around the class. There was no rash, but I’m watching her closely.

On the way to the hospital I stop into a drugstore. We go some children’s tylenol and I found some elastic laces! I had been looking for elastic laces. Your OT wanted me to get some. I had never heard of them. I imagined them to be elastic but I thought that there as possibly more to them. I thought that I would have to make them from elastic from the fabric store. There they were, on an end display shelf, like they were a hot item that was in great demand. Black elastic laces. Just elastic laces … no fancy tying device … just the lace … for $6. I felt a little ripped off paying $6 for two strands of black elastic, but at least it is off my ‘to do’ list.

We install the elastics in your shoes. They are great. You can slip off your running shoes easily but they still feel snug on your feet. I make a mental note to still go to the fabric store and get more elastic. Maybe I still go to the fabric store and get different coloured elastic lace like material for all our running shoes!

We try to decide how to spend our family time for the weekend. At the nurse’s suggestion, we practiced some car transfers in the parking lot. “It’s good to practice.” She said “In case you get stuck then you can call up for some help while you are still here.”

You talk me through how to be the best help and we practice several times. You make it easy. Based on the successful transfers, we decide to go see ‘Avatar’. The nurses think that it’s too a long movie and you would get tired. You and I look at the children and realize that we can’t disappoint them. They have wanted to see the movie. You smile a daddy-smile and said “Let’s go to Avatar!”

We ate lunch and filled out our Post-it notes for Valentines day. Tara helps you get organized for yours and I help Quinn with his spelling. Once the notes were tucked away, away from peekers. We got ready for the movie.

This was your first time in the car in almost 6 months. First time that you are my passenger in your car. I wasn’t nervous like I usually am when I have driven with you in the past. On the rare occasion that I would drive, you would make many comments. On some trips, You would hand out as many comments per mile as the Honda Fit would get in gas mileage!

Today, only once, you politely suggested that I “gear up to the 5th”. I was pleased. You were pleased with my driving ‘skill’. There is no doubt, the stroke has changed the way you think. You are far more supportive and you are becoming an expert at positive affirmations. The children and I all feel it.

We get to the IMAX in fair time. Unfortunately, we couldn’t sit together. You were limited by your chair and we were limited by the available seats. I suspected that the 3-D technology of the movie would be lost on you and maybe somewhat lost on me. You have no left and I have reduced right side vision. Essentially, we have a good pair of eyes between us.

The children really enjoyed the movie but weren’t overly impressed with the 3-D effect. Maybe it’s because their time in front of a 2-D screen is somewhat limited. Their flexible minds, which are used to filling in the blanks everyday, are able to make up the difference easily and they automatically see 3-D when watching 2-D.

I was amazed at the 3-D effect and you didn’t get it at all. There wasn’t much of the movie that you did get. We were sitting to the right side of the screen which, I think, may have accounted for part of it. Although your head was turned towards the screen, the IMAX feature was probably lost on you too because of the seating location in the theatre. I thought that you would have fallen asleep, but you didn’t, you were too uncomfortable in the borrowed oversized wheelchair. You re-named ‘Avatar’ ‘Avastroke’ because it was difficult to follow.

I learned a few things today. You are a cheap date – not special effects needed to impress you. Stick to shorter films and more realistic topics for now until your mind can be a bit more flexible.

We decide to eat dinner away from the hospital. We are all getting cabin fever … from being cooped up in institutions for too long. We need a change of scenery. At first I thought we’d go the East Side Marios, but I missed the driveway so we hit the next restaurant on that side of the road. Boston Pizza. This appealed to you. I’m not sure if it was because of the word ‘Boston’ as in marathon or ‘Pizza’ as in your favorite food. We decided to go in.

It would be a good 30-minute wait but we passed the time playing games and talking to people. As we wait, the children notice all sorts of large red hearts taped to the wall. The hearts had love messages, names and good wishes. My vet mind spotted a number of pet names. Clearly it was some sort of fundraiser. I wondered what the fundraiser was for.

The restaurant was loud and if was difficult to talk. We had to talk loud to hear each other. You were on another ‘I don’t want to be a burden’ streak. Quinn overhears your words. He wanted to know what a burden was. I didn’t know how to answer him. With the movie ‘Avatar’ fresh in my mind and a few moments to think of it, I came up with an explanation.

“A burden is something that you had to do that you don’t want to do. Imagine that I give you a big rock and told you that you had to carry it with you wherever you go. It is a big, heavy rock. You can’t eat it, it has sharp jagged edges and it isn’t even all that pretty. It is hard work to carry it and you have to do it all the time, even while you are sleeping. That’s a burden.”

Immediately Quinn replies, “You are NOT a burden Daddy, we love you and you love us. You are a Daddy.” I point out to you that when the children were helpless infants, we didn’t think of them as a burden. We thought of ourselves as privileged to be caring for our human miracles. You are a miracle and we love you. I try to rally you to the next level. ‘If you saw yourself as a stroke victim, you might be a bit of a burden. But you are a miracle stroke survivor. That makes you an inspiration.”

I want ‘Survivor’ to replace how you are trying to see yourself. You are not a victim and a burden you are a miracle survivor and an inspiration.

We had a good meal with more food then we could eat. We asked for a ‘doggy bag’ and the waitress asked us if we would to buy a heart for a dollar. “What’s the money for?” I asked. “For Heart and Stroke Foundation” she replied “We started this at the beginning of February and so far this restaurant alone has raised over $12,000!” Tara, Quinn and I looked surprise when you said to the server “I had a stroke. We’ll take four hearts please.”

We all took time to consider what we would write. Quinn started. In his neatest writing he wrote a simple and to the point message. ‘My Dad had a stroke and he lived because he loves me.’ Not to be outdone, Tara followed with ‘To Chris, My Daddy. My Dad had a stroke and he lived because he loves me, I won’t be living if it weren’t of him Love Tara.’ You wrote ‘Gwendolyn and Chris – I love Gwen dearly’ and finally I wrote: ‘My husband was an organ donor on Aug 30th 2009. Today he is a stroke SURVIVOR’

It was a very therapeutic exercise. You got to hear from the children how much they love you. Tara’s clearly stated the importance of you in her life. Recently, you have been saying that I am good at doing all the parenting. I’m not. I can’t be both parents. Children have and need two parents for a reason. You are their father. No one can be their father like you can. When I asked Tara to explain her comment she said, “Daddy taught me things that you never knew about, Mum. That’s why he is such an important part of my life.”

On the way home, Tara had a go at trying to tell you how important you are. She tells you about a true story that she read in the ‘Chicken Soup for the Soul’ book. There was a story that really moved her. A story about a little girl who never knew her biological father. As a young person she found a father figure but she didn’t acknowledge the role he played in her life until after his death. Tara and Quinn are lucky, they know who their father is and they have been waiting patiently for you to be their Daddy fulltime again.

Sunday, February 14, 2010

Friday February 12 - An ‘Inspirational Runner’ and More

It seems that I looked forward to the weekend, all week long. Now it’s here, I’m worn out. Today wasn’t especially busy at work. Just steady and low pressure. I was itching to finish. Not because I didn’t enjoy the day at work. I did. Because, I knew the rest of the day would be a race.

A race to walk home with Annie. A race to check email to make sure we had a place to stay. A race to pack. Pack for the children, pack for me, pack food. Collect Annie’s things for her stay over at Juanita’s. Collect the things I wanted to show you this weekend. Feed the fish and feed the cats. Pick up Quinn and drop off Annie and then pick up Tara.

I tried to get this all done by 6 pm. It was a race but we did it. The roads were wet and it was hovering about minus 3. I decided that slow and steady was the best approach. After an emergency bathroom break for Quinn, we finally limped past the finishline at almost 8 pm and now I’m tired.

Earlier today, on the way home with Annie, I got a call from the psychiatrist’s student. They had a good interview with you and felt there was some level of depression. It seems the art of psychiatry is knowing what depression is appropriate and what isn’t. The very question I have been asking myself since early November. I feel a little frustrated that it’s taken this long to get a professional opinion.

The student also mentioned your broken social filter. I don’t see it the same way. It is a much-improved filter since your Truro days. I have not been present when any of the ‘inappropriate language’ has occurred. So I couldn’t comment on it other then to say that I felt that it’s improved a lot and before your stroke your sense of humor was very dry and always had a little edge to it. Some might have said that you challenged social barriers before your stroke.

We both agreed that you are more talkative then ever and I shared my joy at this. “He needs coping strategies for all the stress that is being thrown his way.” I am worried that he may find another addiction to cope. Right now he talks things out. That seems a very healthy way to cope. But I’m worried that this may not continue.”

The student said that you were put on a priority list for counseling and that it would be continued once you go home as a form of support. I feel relieved that a plan is getting put into place.

I really wanted to thank the resident who got the ball rolling on your emotional health. When I called her, earlier this week, to express my long standing concerns, she wasn’t even on the same rotation anymore, but she took the time to listen to me and tried to make a difference.

You were happy to see us. It’s been five days since we last saw you. We were happy to see you too. You were freshly clean-shaven. You looked good. You proudly showed me your journal and the sheets that you are keeping for your OT.

The daily OT log allows you to track the events of the day. There is a section that you must fill in entitled: Today’s Goal. Today’s goal was to keep the left side of your mouth clean. At the bottom of the page is another section entitled: Something positive today. This was blank when we got to the hospital.

You lost your wallet today. Thankfully, I had cleaned out all the important papers from your wallet when you moved to the NSRC. All that was left was a little money and your MSI card. Ironically, this is the card that said, and still does say, that you are an organ donor!

As the children settle down in front of your TV, you tell me quietly that you were called into the ‘principal’s’ office. Your doctor talked to you about inappropriate language. “There’s a flaw with my synapses.” This is your diagnosis, not hers. She just simply asked you to think about things before you say them.

You gave us a little demo of the grabbers and other adaptive aids that the OT has been working with you. You take of your shoes and socks using the gabber. It takes a while and I have to sit on my hands to not ‘help’. Finally you get it. Practice makes perfect. I have to remember that, for you to recover and learn to do things, me helping is really no help. I can also see that you will have a good excuse to leave your clothing on the floor from now on. This has been a pet peeve of mine for only about 25 of our 24 years together.

I read to you the preface of our new book: ‘Stronger After Stroke’. You are invigorated by the words of hope. “I will prove them wrong (referring to this week’s doctors) but as long as you are happy then I don’t give a crap.” You then make a promise to me … in writing on the OT log sheet. “I was given ‘Stronger After Stroke’ by my amazing wife, Gwen, which is the first book that I will read while being incarcerated. Over and Out.”

You lean over and kiss me and say “Grow old with me, the best is yet to be ... I will work at it hard.”

Karen, who cares for our children on Fridays after school said today “Tell Chris that he is still a runner … an inspirational runner. There are days I don’t want to run but I think of him and I get out there and do it.” You are an inspirational runner. But you have potential to be an inspiration in many other roles in your life.

Father, husband, son, brother, friend … these are the roles that will motivate you to get the best recovery that you can. Among them is room for an ‘inspirational runner’.

Friday, February 12, 2010

Thursday February 11 – No ‘Never’s Ever

In the world of rehabilitation the word ‘Never’ has no place. ‘Never’ is so strong a word it removes all hope. When hope goes, it takes with it one’s will, determination and motivation. Without these essential ingredients, rehabilitation is not possible.

Doctors can say ‘Never’ when referring to other things like smoking, drinking or any self-destructive behaviour. But they should NEVER utter the words ‘Never’ to patients. Especially brain injured patients.

I started to read the ‘Stronger after Stroke – Your Roadmap to Recovery’ book tonight while at Chella’s waiting for Tara and Quinn’s piano lessons. As with any book I read, I read the last part first. The index. I looked of key words that were used in reference to your stroke. Hemiparetic, shoulder-hand pain, neglect, neuropathic pain. I got some hits and some misses. I decided it would be simpler to just start the book from the beginning.

It has a great beginning. In the preface, the author talks about the ‘super-surviver’. A “super-survivor is so unwilling to let go of their career, their independence, or a personal passion that they are compelled to recover. They intertwine recovery with what they love to do. Sometimes recovery is so much part of what they love doing that they don’t even notice they’re recovering!”

“For super-survivor, recovery is a vision quest. The challenge of recovery is no different then the other challenges that they have conquered in life. They get on with it. They put in the time. They fall in love with the process. In much the same way athletes and musicians enjoy practice, stroke survivors who recover see the process of recovery as an opportunity for growth.”

The preface goes on about neuroplasticity, and how motivation is a very big part of drives the neuroplasticity. “While the idea of ‘practice makes perfect’ is simple, how to practice is more complicated. This book defines the time needed to drive neuroplastic change.”

WOW, this grabbed my attention. As I listen to the music leaking out the piano room door, I remembered Tara’s frustration with the piano at first. She practiced and got better. But it’s falling in love with the practice that makes a passion. Tara now loves to pick out songs on the piano, ukulele, recorder, guitar and many other musical instruments she can get her hands on.

She has fallen in love with the process of practice. I see Quinn starting to do the same. Practice is the birthplace of a passion. How can I help you fall in love with your practice? Your recovery is becoming my passion but it has to be yours too.

I don’t have to be a rehabilitation expert to know that the first ingredients for a passion are: hope, will, determination and motivation. Like a bitch (for you non-animal types = a fierce mother dog), I will not let anyone try to take those away from you again.

After many no answers and busy signals, I finally got through to you tonight. You had a good talk with Steve from Ottawa. He and Laura are heading to Jamaica for a holiday. You said that Steve felt guilty about going. “I don’t understand, he has nothing to feel guilty about.” You said.

I understand Steve’s guilt. I feel guilt too. Maybe guilt isn’t the right word. I’m not sure what the right word is. I feel sad that you, a natural athlete and gifted driver, are trapped in your body and me, a natural cluts and challenged driver, have been given freedom to roam about with little effort. Somehow, it doesn’t seem fair.

At PT today, you were walking between the parallel bars. Your PT student felt that you were lifting your left leg up a little more. A lift is the start to a step. That’s progress. I will be in Halifax next Monday for the day. We have the family meeting then. I hope to see the progress.

You have spent your afternoons on the Kinetron. I expect it will help you strengthen your legs … both of them.

Your OT is working on a plan for you to follow for recovery. I’m glad to hear this. I think this will help keep you focused on your recovery. Every journey or marathon needs to be mapped out.

This afternoon, there was some sort of Open House. They had a trivia question game. “I got about 90% of them right.”

“No coffee today” You said. I suspect that’s not true. You got coffee with your meals, just no Tim Horton's coffee. I suspect that you will survive.

No psychiatrist visit today. After having two psychiatrist-types see you yesterday, you were hopeful that someone might see you again today. “Perhaps next week. Maybe they are working on a plan for you too! Maybe there is just too much for them to work on.” I said teasingly. “Yeah” you said “maybe they will say that I have to give up breathing!”

Wednesday February 10 - Limitations

As I predicted, I didn’t sleep well. That’s the first night I sleep poorly in a long time. I think that not talking to you last night had something to do with it. To remedy this I called you first thing in the morning.

You are down again. You missed our nightly phone call too. “I can’t drive – it was the one thing I could do – Not being able to do one simple thing makes me more useless and hate myself more.”

You felt that you got ‘in trouble’ yesterday. You sounded like a child telling me that the teacher doesn’t like you. On a couple of occasions apparently you used ‘inappropriate language’. At least that’s what you were told. You feel hurt that you might have offended some of the staff.

My first instinct is anger. What do they expect? In the last two weeks, they have told you all the things you can’t do and expect you, a brain injured patient, to take the news graciously? They are professional health care workers – suck it up – you are an amateur patient. I wanted to scream. Then I collect my thoughts. I reminded you about your days at the Truro hospital when your verbal filter was really broken. I reminded you how the staff patiently and kindly made you stop the talk.

Fran and you even worked out a code word that helped remind you that you were conversing up the wrong tree. ‘Peppermint.’ It is a very appropriate word for you. You hate peppermint. The smell of it makes you nauseated. Just the sound of the word is almost as bad. It was and is a very good reminder … a good warning.

I explain to you what I understand about the loss of social filters being a common occurrence with an injured brain. The staff at the NSRC are merely trying to re-teach you appropriate social boundaries. Boundaries that you had before your stroke. They are not mad at you. They are trying to make you better. You felt much better hearing this explanation.

You did a car transfer yesterday! It went well. You felt it was fairly easy. You did it with a male OT. You put your arm around his neck and hugged him. Then you shifted yourself to the car seat and back to your chair. The OT has part of a car in their office. It’s there to specifically teach people this skill. I haven’t seen it but it’s a small car and the OT said that it is similar to the Honda Fit. If you can transfer in it – then you can transfer to our car.

I am so pleased. I hope that this might mean we could take you out of the hospital for a while and do something fun with the children. Every weekend in a hospital has given us all ‘cabin fever’. Later, a car transfer could mean weekend’s home.

I felt better talking to you and both of us felt like we could take on our days. I go off to work and you are off to your PT session.

I called you again at bedtime. You sounded a little better. You had two people come to see you today. You thought that they were psychiatrists and/or social workers! I’m impressed. The resident that I talked to yesterday got the wheels turning quickly. You had a good chat with them. You thought that they might contact me tomorrow to fill in some information.

You had a great visit from one of your admirers from afar. Lynne. Lynne ran in the same race as you did on your stroke day. It was her first race (I think). She was glad to have completed 10 km. She has been following your story ever since. It sounds like you hit it off with her. Full of good positive energy, she is just what you needed this week to help you get past the painful parts of the week. She liked the note that I wrote for you on your white board. “If you get stuck, take 29 steps and start again”. She said that she’d be back to visit.

Marsha visited as well. We are so lucky to have so many positive people around us.
It seems that the timing of the events for this marathon have been very well executed. Every time there has been a bad spot in the marathon, there is always a friend who helps cheer us past it. We have been blessed.

The stinging words ‘inappropriate language’ has been knocking about in your brain since yesterday. You talk about it with your PT student. “She’s very sweet. She gave me good advise.” You said. The transfer class that you volunteered for went well.

You think that the BM streak may have ended. You aren’t sure. Maybe it just not that exciting any more. “I’m done with streaks for now … unless I can run again. For now, my job is being a husband and a father.

You ask me who I vent to about my worries. “The journal and anyone who wants to listen.” Although, I’m trying to rein it in now – the negativity that oozes out with my venting is not doing me any good. I want to stay positive. “You can vent to me.” You said. “That’s part of my job as a husband.” I would but I don’t want to over load you at this time. That’s were this journal is so helpful.

“I want to do many thing with you guys but I may have to forfeit some things.” You said. “I might have …” You pause, not able to find the right word and not wanting to say ‘disabled’. “Limitations?” I suggested. “Yes, limitations. I might have some limitations.” You said. I accept that that might be the case for now, but I’m not going to let you crawl into a hole somewhere and not do things with the family. I remind you that what ever we do as a family, you are part of the experience as far as the children are concerned.

Another tooth is lost in the Cashen Clan. Tara’s this time. She lost it at school yesterday, brought it home today and put it under her pillow. Quinn asks “Tell me the truth … Are you the tooth fairy?” You would have had a clever answer. All I could come up with was “I don’t know Quinny.” He seemed to accept that for now.

You think you have limitations … well I think I have limitations. In fact – having limitations is part of the human condition. The trick is to decide which to accept and which you deny.