The streak continues. You think it’s sixteen and I say it’s thirteen. I can’t argue with you. Especially when you plead with me that you are “far from perfect and things have happened because of the stroke and maybe I am wrong but I think that this is my sixteenth day and that’s the way I’m going to remember it.” Given the circumstances, a little padding on the streak is acceptable in my opinion, although you would not have stood of that in you before-stroke days.
Today you want to talk about the children and about your childhood. You feel that you missed opportunities when you were young and you don’t want our children to miss opportunities to grow and develop interests and passions. You feel that your missed opportunities were your choice to miss, and you regret that choice. You feel that you have been given second chance. “If I don’t pay attention to what God is telling me then the next time I’m not going to live.” This is a wake up call for doing things differently. “I’m lucky to be here … very lucky.”
Your last tube was removed today. Dr. Curtis came in to look at your tube. He had performed surgery on you before. A hernia repair. You like him and trust him. He had a good look at the tube and went off to get some supplies. When he came back, I asked what type of tube it was. He replied that was the type that one just “pull at the base and it will … pop out.” And it did pop out. You felt the pull and it didn’t feel good. I suppose it was like a Band-Aid. The first time you pull off a Band-Aid without warning of the pain, it doesn’t hurt so much. The second time the anticipation of pain makes it worse. He didn’t want you anticipating any pain. I know it hurt but it would have been worse.
After he left, you asked me to fish the tube out of the garbage. You want the trophy. You certainly deserve a trophy. For the rest of the day, you showed anyone who showed the slightest interest in what ‘was in my hole.’ … your trophy tube.
The wound is an actual hole in to your stomach. Dr. Curtis bandaged it and said it would heal in on it’s own. Just like you tracheotomy tube scar. This makes a total of three scars from your stroke. The big question mark shaped scar along your hairline and into your hair on the right side, the tracheotomy scar and the PEG tube scar.
When the PEG tube scar heals, I think that it might look a little like a second belly button. I find this an interesting thought. When you had your stroke, part of you died but the rest of you didn’t. Now your identity will be a little different. It’s like you were ‘born again.’ The scar is proof of your new or revised existence.
You are very philosophical today. “I want to do something important with my life. I don’t want to go home and not be able to do anything and sit around and wonder what could have been.”
“It’s up to you to figure out what can be.” I reply.
“What can I do to get this to work for me?” you say gesturing to your left side.
I read to you a little about stroke and some rehabilitation theories. Your roommate listens intently too. At lunch the three of us talk about the new theories. The book I was reading was ‘The Brain That Changes Itself’ by Norman Doidge. Edward Taub and his deafferented monkeys proved some interesting theories about the ability to regain movement in limbs.
There is a lot of activity at the hospital today. The staff is trying to move patients to their eventual destinations in preparation for the pending strike. Management-looking like people are following the kitchen staff around to learn the ropes of food service and the social worker is very busy, running from room to room making arrangements for patients.
Despite this, when the physio team suggested that the standing pole should be installed in your room, the nurse was right on top of it. A work order was dispatched immediately. The physio team scouted out rooms to find a room that would be a good fit for you. Once it was found, the move happened within minutes and the maintenance man was right on the movers’ heels to install your pole.
So, it’s official. As of today, you have a bed-side dancing pole. Most men would love it have this feature in their bedroom. You are no exception. The difference between you and other men is that you want to be the dancer not watch a dancer … will maybe you’d like that too – but you probably won’t find anyone that will perform for you.
Your new room, number 424, is a semi private. You have a new roommate who is hoping to go home very soon.
Your physio session was another opportunity to show off. I asked if it was OK if I video taped the session so the children could see the progress you made. Today’s session focused on you transferring from the bed to the chair and from the chair to the bed. After on false start, you did several partial stands and pivots to get back and forth between the chair and bed.
I read to you a rather beautifully written Christmas letter from Anne. Anne, who now lives in Calgary, was a catalyst for you being involved with group running. Before you ran together on Saturdays with a group, you ran by yourself. Anne gave you a sense of community while running. This companionship hooked your interest every since. Another email from a fellow Boston marathoner, Jody, tells you of the newly formed Hubtown Runners Group. The interest in this running group has been very high. You would dearly hope to participate in this group.
You had lots of visitors today. You had a good afternoon. Ruth-Ann visited you for the first time. She is an amazing woman, who by all accounts should feel very jaded by life. Having suffered tragic loss though out her life, she chose to look for the good and not dwell on the negative. She is writing a book that sounds very conceptual and talks about her memories and her near death experience as a child.
Although she is not physically disabled, listening to her makes me think about the ‘Disability Paradox’. Despite the sadness in her life, she says that she wouldn’t change it. She seems at peace with her losses. The disability paradox has the same theme. In the face of physical loss (personal loss), a person can free released by the loss. They can feel that their life is as full or as rewarding or perhaps even more rewarding and fuller then it was before the loss. I sense that you are starting to experience this paradox too.
On a few occasions recently, you have said that your stroke may have been a good event to have in your life. A stroke of luck.
There are so many types of memories. Memories are linked to a sensory input. Like the smell of vanilla. It may make you think of your grandmother and her kitchen at Christmas. Smell, taste, sounds, words and images all provoke memories. How do we try to dig out the memories of your left side?
While listening to Ruth-Ann, I wondered if there was a reason that you remembered the act of working on the lathe. As Ruth-Ann words about memory mix in my mind with the findings of Edward Taub and his deafferented monkeys, I wondered perhaps your wood-working memory was provoked easily because it requires an action that needs both hands to work together in a coordinated way to do something. The right hand by it self could not turn a bowl on a lathe, nor could the left hand alone. Wood-working requires both hands to work together in a carefully coordinated dance for a common purpose.
Perhaps when one draws on memories for the right hand, the memories spilled over to the left side and the left side reacts in a reflexive way. Maybe this is the key to getting back physical memory. Think about activities that require a coordinated action from both the right and left sides. Activities like throwing the ball from hand to hand, driving a standard transmission car (clutch – accelerator coordination). Playing the piano, if that was something you did before the stroke. I think pianists must special wiring in their brains.
I ask you a question. “If you could three wishes, what would they be?” You think about this for quite a while. Your reply surprised me. “I wish that you and the kids would have a long healthy life.” “What about you – don’t you want a long healthy life?” I ask. “I want to live in Cape Breton.” You answer. Then you asked me what I’d pick for wishes. “I only want the one wish. And I always wish for the same thing … Chose to be happy.” Your roommate joins in and says “That’s something we would all want to have but it usually don’t happen.” I disagreed. To choose happiness isn’t always easy but it is the most rewarding.