This morning I read to you the journal entry I made last night. I wanted to know what you thought of it. It contains an emotional experience that I don’t know if I want to share with everyone …yet. In time, I think you will want to share but I don’t think that you are ready for that decision now. It can wait. The important thing is that we shared an important and long overdue conversation. And for those of you whose mind wonders close to the gutter … forget it – it wasn’t sex. (If you want that – you will have to buy the book!)
I thought today was going to be a bit of a yawner after yesterday. Like a lost lazy summer day when you were a kid and your summer vacation seems to stretch far into the future. I couldn’t imagine how today could be more emotional then yesterday.
It started out slow and easy. We made preparations for the CTCL wheelchair bus to come and pick you up on Friday so you could be home for the weekend. I booked time off work to travel with you in the bus. We even called Mildred and arranged for her to ‘Chris-sit’ you on Friday afternoon while I was at work. You should me how easy it was for you to get from your bed to the chair using the pole and we socialized with some of the ‘regulars’ on the floor.
The atmosphere on the floor seemed a little charged with excitement as the social worker was tirelessly finding places for people to go before the strike. The staff was periodically tuning into the news about the strike negotiations. The union and the government were still talking to each other. That’s a good sign. I suspect it will be decided in the eleventh hour so that all parties can come away from the table, feeling and looking like they made the best deal they make. It’s just good politics.
You got a visit from Broghan, a cute little dog who doesn’t think he is a dog at all. Amanda and Broghan volunteer at the hospital through St John’s Ambulance Therapy Dog program.
We are both amazed by the great maintenance people who work at the hospital. They will be on the picket line too. It seems that every maintenance worker we’ve met, you have bonded with. Joe, Nellie and Tiny. It seems that they have been very well chosen for the job. Not for their attention to the dirt detail. Although I’m sure they have high standards. It’s the positive energy that they bring to work that makes them special. They don’t only maintain the facility. They maintain the morale of the staff and patients.
After lunch, we cuddle and talk. We talk about what stresses me. You have an innate ability to make me lighten up when I feel dark. It always amazes me when it happens. You can make my mood turn 180 degrees with just a few well-chosen words.
Why were you spared? You can help others like you helped me. Between your insights, your experience and humor, you can help a lot of people through their dark times and see the rainbow at the end of the rain.
The new OT person pops her head in the door to say that if we want, we could get a standing pole for the house too. “MacQuarries rents them out at $10 a week.” That’s a deal and if it means that we don’t need a lift, which is much more expensive, then that’s a great deal. She calls and tells them that I will pick it up today.
I force myself from your warm bed to go do errands. Get groceries and get the equipment for MacQuarries Pharmasave. Grocery shopping has never been my favorite job. (I would rather pick up dog poop!) But if you are coming home this weekend, we need food.
Tara and Quinn will probably never want to eat my cooking again. I’m going to have to slowly introduce my cooking back into their lives so we are less dependent on the kindness of friends so much. As it is, I only have to make dinners for them on Mondays, Wednesdays and the weekends. That’s not much work. I am actually looking forward to it. Today’s grocery shopping was almost fun.
As I picked up the equipment for your weekend visit, The ladies ask after you. I tell them that rehab is only eleven days away. “He must be looking forward to that.” They said. They are right. You are like an excited kid who is counting down the days to a really awesome summer camp. You are excited about the possibilities and a little nervous of being in Halifax by yourself. I won’t get to visit you nearly as much. I will get to Halifax on Tuesdays and Thursdays for this month, but in February we will only be able to travel on the weekends since I will back to work fulltime. We both have mixed feelings about going to NSRC, but the positives outweigh the negatives. We will get through this too.
Just as I drive into our driveway, the cell phone rings. It is the social worker. “We just got a call from the rehab. They want Chris to go tomorrow!” “Tomorrow?” I stutter. I didn’t expect this news. “Chris wondered if he could put them off until after the weekend, and go on Monday, I don’t think that’s a good idea.” She said. I agreed.
Rehab tomorrow. WOW. After unloading the groceries, I make a return trip to MacQuarries Pharmasave. “I’ll bet that this is the shortest rental you ever had.” I said as I walk in the door. I explain the change of plans and I add my theory. With the strike looming in the foreground, I’ll bet the social worker and stroke coordinator did a little negotiation of their own. It turns out that they are either very good bargainers or have a magical wand. Either way, because of their efforts, you get to go to rehab ten days early.
I am relieved. This gives you a little more time to settle into the folds of the NSRC before I’m back to work fulltime.
After the equipment return, I fly the car to the hospital. I can’t wait to give you a big hug.
You tell the children your big news when I bring them in before bedtime. They are both excited for you. Just before we leave, you show the children how you can stand using the pole. They are both struck by how tall you are. It’s that T-spine extension that you and the physio team have been working on.
We reminisce about your state when you first came to Truro. You have come a long way. You could hardly talk and couldn’t eat anything but thickened liquids. That seems like a very long time ago.
Tara has signed up for the music festival. Piano and singing. She is going to do musical theatre too. You ask her to do a request. You want her to play the ‘Feather Theme’ from Forrest Gump. You love that composition. She said that she would try to master it for you by the end of the year.
We take a few pictures of the family together to commemorate your big day.
Thursday, January 14, 2010
Wednesday, January 13, 2010
Tuesday January 12 - A stroke of luck
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.
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.
Monday, January 11, 2010
Monday January 11 – More Stripper Pole Tricks and Bigger Streaks
You might get moved to a different room so you can have the stripper pole in your room. The room you are in now would not support a ceiling to floor pole because your room has a dropped ceiling. Today, you used the pole to stand up from your chair and pivot and sit down on a bed. Then you reversed the order and moved from the bed to the chair. This would make transferring you much easier. I can see how this activity could be translated to a new skill of getting into a car seat. That would be great. Tomorrow I will discuss this with your physio team.
Tomorrow you want me to bring a camera. You want pictures of how you are now so you can see later how far you have come. Maybe I can get some video of you standing too.
On my visit after work, you maintain that your record is going to be 14 days of BM today, but you are having a little trouble. You sent me out to get you a Tim Horton’s coffee. Later in the night, you called me at home with the news. “The coffee worked, that’s fourteen days in a row!”
I don’t know, in fact, I have never known the thrill of the streak like you do. But I will rejoice in every streak – even that one. Whatever it takes to get you better.
Tomorrow you want me to bring a camera. You want pictures of how you are now so you can see later how far you have come. Maybe I can get some video of you standing too.
On my visit after work, you maintain that your record is going to be 14 days of BM today, but you are having a little trouble. You sent me out to get you a Tim Horton’s coffee. Later in the night, you called me at home with the news. “The coffee worked, that’s fourteen days in a row!”
I don’t know, in fact, I have never known the thrill of the streak like you do. But I will rejoice in every streak – even that one. Whatever it takes to get you better.
Sunday January 10 – An Inspirational Runner.
You talk today about your dreams for the future. You know you are not a fast runner. You want to be an inspirational runner. That’s your story. If you can finish this marathon, then you will be an inspirational runner. That may be how you pay it forward.
You want to finish your workshop. Insulate and drywall and organize it. You recognize that you may need help. “I can’t hammer a nail right now, I need my left hand but maybe after rehab, I can hold a nail.”
There are only two things you want from rehab. To run and to use your left arm. That’s your complete list. If you can accomplish these goals, you will be whole again. You know it will take years to ‘fine tune’ your skills, that’s OK. You will be patient.
You try to imagine what rehab is like. As I understand it, rehab’s goal is to try to restore function back to the point where you are able to look after yourself. To quote the website for the NSRC they identify and enhance each person’s abilities. Their goal is to restore every patient to a life that is as full and rewarding as possible.
Today, you had an epiphany. You had a left-hand memory. You remembered that you used your left hand to hold a chisel. I think that this is a huge breakthrough. You have just tapped into a physical memory of holding the chisel. As you describe it to me, you make noises like the whirl of the lathe. “I would run the chisel along the thumb and my hand was right up against the rest. The metal part would go over my thumb.
Tapping into the memory of using your hand is a huge step forward.
I give your legs a massage. The sensation of the massage is distinctly different between the left and the right. Compared to the normal leg the sensory information from the left seems exaggerated. A tap feels like a hit and a rub feels like an abrasion. Neither feel painful. The feeling is just not like the feeling that you have on the right side.
“There are a lot memories of here that weren’t great. I will be so happy to be out. I will look at everything differently. Every inch of every place that I’ve ever known.”
You have started to remember little snippets of time while at the QE2. When Steve came to visit, it was a hot day and we went outside in the sun. You remember hearing talk about it being warm for late October. I hope most of your memories are suppressed. After seeing the pain that you have now that you can communicate it, I think you had a lot of pain before at the QE2. That was when I argued with the resident that Tylenol 3 as needed was a stupid order. How were you suppose to request a need for pain management when you could barely talk.
You will see things in a new light. You will look at things like you have seen them for the first time. You may even have to study them to know what it is. In the book, ‘My Stroke of Insight’, Jill Taylor talked about being unsure if she could stand on grass or walk on cracks in the pavement. I don’t think that you will have this sense of rediscovery, but after everything you have been through, your world will seem a little foreign to you.
You are looking forward to making tons of friends, lots of hugs – two arm hugs.
Your running streak has stopped, but you keep an eye on the days since your stroke … I have been writing the days on the white board in your room. ‘Day 133’ is written on the board. This is your new streak. Now you have started an unofficial BM streak. “I’m 13 for 13.” You are pleased to report. I didn’t have the heart to correct you and that you are actually eleven BM’s in eleven days.
You have another streak that is very important to you, a streak that predates the running streak. This is a streak that you have every right to be proud of. I am proud of you. It is 4316 days. This is a streak that only you should share with people. I hope that some day you do.
The children have a busy weekend. Today, Quinn is off to a birthday party. And Tara is going skating with Marsha and Doug. Quinn is really getting the knack of telling time with the watch that Santa put in his stocking. I told him that when I write my letter of compliant about the Nintendo DS, I would start the letter nicely and tell Santa that I thought he did a good job with the watch. He is getting quite skilled at calculating how late we are going to be for things and equally skilled at telling me when I am late. He certainly is your son.
It seems the Nintendo obsession has slowed down. I know he still thinks about it every day, but he doesn’t play it every day or even ask to play it every day. He is learning self-control. Maybe Santa did know what he was doing.
The skating with Marsha was OK, according to Tara. She didn’t know any other kids there. I think she missed Quinn. He is more socially outgoing then Tara in that type of situation. She maybe the big sister, but her confidence is higher when she has her little brother by her side.
While the children are doing their activities, and you are napping after lunch, Annie and I go for a walk in the woods. At this time of year, the woods are wonderful. The snow does a magical thing to the woods. New trails expose themselves. Animal trails. The thin layer of snow reveals the trails and the footprints (both hoof and paw) help identify the trails used the most. Some trails are like highways in the woods. Annie loves finding new trails.
There are new paths that lead to new places. There are also new paths that lead to old places but by a different route. I couldn’t help but think about the new neuro-pathways that you are making. New paths to old places.
As we walk in the woods, I think about the very busy lives that we are giving our children. I often wonder if they are too busy. Are we doing the right thing? I am getting worn down trying to keep up to their pace. We certainly are giving them a lot of memories and skills. Memories and skills that will serve as a foundation for new life experiences as they continue to grow.
Since I have spent a lot of time with older people recently, between the patients in your hospital wing and the Mira where Dad lived, I realized that the childhood memories are revisited later in life. I guess the children will have a great place to visit during their second childhood. There will be no need for re-runs.
After our walk in the woods, Annie and I met up with Tara and we went to visit Donald. You had given me with a topic list. Things to talk about with Donald. You want to suggest things that would interest him and yet not worry him. Armed with your list, Tara, Annie and I enter his room. He was asleep. I woke him gently. A big smile spread over his face when he focused on me. He asked after you, when I answered, he didn’t hear. His hearing aid was lost. We looked for it but to no avail. Your carefully planned topic list was not needed. I mimed and shouted out answers to his questions. He didn’t let frustration get to him, he just smiled graciously and said that we would have to talk amongst ourselves.
Annie really likes Donald. She is generally nervous of new people. But never children or older people. She seems most anxious with adults between puberty and menopause. Annie and Donald have a long talk while she gets her ears rubbed. Who needs hearing aids anyway?
After we pick Quinn up from the party, we come and visit you. I was worn out. I fell asleep in a chair in your room while you visited with the children. Afterwards, I dropped the children off at Juanita and Wayne’s house for supper and one more sleepover. I am really tired now and I’m on-call again tonight. I went to bed early, in case I got called in to work.
It was a quiet night, I got a good night’s sleep. I dreamt about you working on your lathe… with both hands.
You want to finish your workshop. Insulate and drywall and organize it. You recognize that you may need help. “I can’t hammer a nail right now, I need my left hand but maybe after rehab, I can hold a nail.”
There are only two things you want from rehab. To run and to use your left arm. That’s your complete list. If you can accomplish these goals, you will be whole again. You know it will take years to ‘fine tune’ your skills, that’s OK. You will be patient.
You try to imagine what rehab is like. As I understand it, rehab’s goal is to try to restore function back to the point where you are able to look after yourself. To quote the website for the NSRC they identify and enhance each person’s abilities. Their goal is to restore every patient to a life that is as full and rewarding as possible.
Today, you had an epiphany. You had a left-hand memory. You remembered that you used your left hand to hold a chisel. I think that this is a huge breakthrough. You have just tapped into a physical memory of holding the chisel. As you describe it to me, you make noises like the whirl of the lathe. “I would run the chisel along the thumb and my hand was right up against the rest. The metal part would go over my thumb.
Tapping into the memory of using your hand is a huge step forward.
I give your legs a massage. The sensation of the massage is distinctly different between the left and the right. Compared to the normal leg the sensory information from the left seems exaggerated. A tap feels like a hit and a rub feels like an abrasion. Neither feel painful. The feeling is just not like the feeling that you have on the right side.
“There are a lot memories of here that weren’t great. I will be so happy to be out. I will look at everything differently. Every inch of every place that I’ve ever known.”
You have started to remember little snippets of time while at the QE2. When Steve came to visit, it was a hot day and we went outside in the sun. You remember hearing talk about it being warm for late October. I hope most of your memories are suppressed. After seeing the pain that you have now that you can communicate it, I think you had a lot of pain before at the QE2. That was when I argued with the resident that Tylenol 3 as needed was a stupid order. How were you suppose to request a need for pain management when you could barely talk.
You will see things in a new light. You will look at things like you have seen them for the first time. You may even have to study them to know what it is. In the book, ‘My Stroke of Insight’, Jill Taylor talked about being unsure if she could stand on grass or walk on cracks in the pavement. I don’t think that you will have this sense of rediscovery, but after everything you have been through, your world will seem a little foreign to you.
You are looking forward to making tons of friends, lots of hugs – two arm hugs.
Your running streak has stopped, but you keep an eye on the days since your stroke … I have been writing the days on the white board in your room. ‘Day 133’ is written on the board. This is your new streak. Now you have started an unofficial BM streak. “I’m 13 for 13.” You are pleased to report. I didn’t have the heart to correct you and that you are actually eleven BM’s in eleven days.
You have another streak that is very important to you, a streak that predates the running streak. This is a streak that you have every right to be proud of. I am proud of you. It is 4316 days. This is a streak that only you should share with people. I hope that some day you do.
The children have a busy weekend. Today, Quinn is off to a birthday party. And Tara is going skating with Marsha and Doug. Quinn is really getting the knack of telling time with the watch that Santa put in his stocking. I told him that when I write my letter of compliant about the Nintendo DS, I would start the letter nicely and tell Santa that I thought he did a good job with the watch. He is getting quite skilled at calculating how late we are going to be for things and equally skilled at telling me when I am late. He certainly is your son.
It seems the Nintendo obsession has slowed down. I know he still thinks about it every day, but he doesn’t play it every day or even ask to play it every day. He is learning self-control. Maybe Santa did know what he was doing.
The skating with Marsha was OK, according to Tara. She didn’t know any other kids there. I think she missed Quinn. He is more socially outgoing then Tara in that type of situation. She maybe the big sister, but her confidence is higher when she has her little brother by her side.
While the children are doing their activities, and you are napping after lunch, Annie and I go for a walk in the woods. At this time of year, the woods are wonderful. The snow does a magical thing to the woods. New trails expose themselves. Animal trails. The thin layer of snow reveals the trails and the footprints (both hoof and paw) help identify the trails used the most. Some trails are like highways in the woods. Annie loves finding new trails.
There are new paths that lead to new places. There are also new paths that lead to old places but by a different route. I couldn’t help but think about the new neuro-pathways that you are making. New paths to old places.
As we walk in the woods, I think about the very busy lives that we are giving our children. I often wonder if they are too busy. Are we doing the right thing? I am getting worn down trying to keep up to their pace. We certainly are giving them a lot of memories and skills. Memories and skills that will serve as a foundation for new life experiences as they continue to grow.
Since I have spent a lot of time with older people recently, between the patients in your hospital wing and the Mira where Dad lived, I realized that the childhood memories are revisited later in life. I guess the children will have a great place to visit during their second childhood. There will be no need for re-runs.
After our walk in the woods, Annie and I met up with Tara and we went to visit Donald. You had given me with a topic list. Things to talk about with Donald. You want to suggest things that would interest him and yet not worry him. Armed with your list, Tara, Annie and I enter his room. He was asleep. I woke him gently. A big smile spread over his face when he focused on me. He asked after you, when I answered, he didn’t hear. His hearing aid was lost. We looked for it but to no avail. Your carefully planned topic list was not needed. I mimed and shouted out answers to his questions. He didn’t let frustration get to him, he just smiled graciously and said that we would have to talk amongst ourselves.
Annie really likes Donald. She is generally nervous of new people. But never children or older people. She seems most anxious with adults between puberty and menopause. Annie and Donald have a long talk while she gets her ears rubbed. Who needs hearing aids anyway?
After we pick Quinn up from the party, we come and visit you. I was worn out. I fell asleep in a chair in your room while you visited with the children. Afterwards, I dropped the children off at Juanita and Wayne’s house for supper and one more sleepover. I am really tired now and I’m on-call again tonight. I went to bed early, in case I got called in to work.
It was a quiet night, I got a good night’s sleep. I dreamt about you working on your lathe… with both hands.
Sunday, January 10, 2010
Saturday January 9 – The Two Week Plan
There was no emergency calls over-night. After a good night’s sleep, I was thinking about how we could best use the time you have left in Truro. I came up with a short list.
The first is get your PEG tube out. This is already on the hospital’s to do list. They had thought that maybe it would be done this past week. So hopefully it will be done soon. This represents the last extra body part or tube in your body.
You have gained back so much in the past months. It seems like a lifetime ago that you couldn’t even regulate your own body temperature and blood sodium levels. Now you can do that and many more things. Although the list of things you need to work on seems big now, it was a very long list before. It’s getting shorter all the time.
You have maintained your weight well since the night feedings via the tube have finished. Now the tube is just maintained by flushing it a few times a day. The exit wound for the tube is a little inflamed. Your body doesn’t want it any more.
I wish I could say the same about my weight. Either there is more gravity around me lately or someone is messing with my pants. My ‘fat pants’ are tight. I don’t feel very good about myself. I know that the combination of Christmas and food and stress and more food has taken its toll. I need to get more exercise back into my life. Climbing the stairs to the fourth floor two to four times a day doesn’t really help me.
The second goal is to learn how to use the calling card. You have mastered making local calls. You even remember how to get an outside line first. Long distance calls are more difficult. You have to get an outside line, then call the calling card number then press1 for english and then enter in the PIN followed by the phone number. I found this undertaking a little challenging the first few times myself. I want you to able to call home or anywhere easily once you are the NSRC. I worry that you will feel socially isolated in Halifax by yourself. I know that you will be kept busy during the day but typically it’s the evenings that you find difficult.
You need to learn to tolerant the wheel chair for longer time periods. We were doing well at home over the holidays with you in the chair 3-4 times a day for 1-2 hours each time. Now that you are back in the hospital, you are in your bed much more. The nursing staff is not as encouraging as I am to get you in your chair. They don’t nag like a wife does.
The last thing is to work on getting you to transfer from wheel chair to the car and from the car to the wheel chair. This would make trips home from Halifax for the weekend much easily to achieve. No wheelchair bus needed. I don’t know if this is possible. I will ask the physio team next week.
I called the MacQuarries Pharmasave the other day, where I rented the lift, and booked the lift for next weekend. You have two weekends home for sure. I want to make the most of them.
This morning Marianne was in to visit you. She has been such a great help. Right from the beginning, That horrible Sunday evening, she has been there to hold the children and me, visit you and do whatever she can to lighten the load. Now, she is going to help more. When I told about my work schedule, my on call hours and how they are going to make child care a challenge, she said that she would be ‘on call’ for me in case I have a middle of the night animal emergency that I must tend too.
We are so lucky to have so many human angels in our lives.
Your roommate could not have been better chosen. The two of you are cut from the same cloth. The two of you banter back and forth, passing the hours and days away with all sorts of topics. Until today, I was mostly privy to the body function talks but it turns out that you talk about a lot more then that. Your roommate spouts out knowledge about all sorts of things. He knows a little about a lot. I don’t think his stroke has affected his memory at all.
Some of today’s topics included the difference between ravens and crows, Saint Paul contribution to the King James Bible, the historical meaning of ‘Good King Wenceslas’, Glooscap and the Mi’kmaq people and Prince Henry Sinclair journey to Nova Scotia.
The two of you share some favorite movies, The Great Escape and the Magnificent Seven. We even found time to talk about politics and homeless shelters and the origin of the word pad for a place to stay.
I can’t wait for tomorrow’s talks. Like you, your roommate had a stroke that affects his left side. He has already been to rehab but there was little more that they can do. He will be going to live with one of his daughters next week. You will be sorry to see him go. You are developing a special friendship with him, much like the friendship you have with Donald.
We talk about your goals. Short term and long term. You want to be realistic but you don’t want to lose hope. It’s too early for losing hope. It’s possible that you may not be able to return to a physical job. Your mind is still active and very capable. “Maybe I’ll go back to school” You say. “I want to help people.”
“I’m stubborn and greedy and that might help me. When I get out of rehab and I’m allowed to run, I might be so caught up in the dream of being 45, having a stroke where I almost died ... I don’t think I’m going to be so concerned about colds and stuff. I really don’t ... I will definitely eat healthy too.”
You are taking this second chance seriously.
Your resolutions for 2010 and the years to come. Get in shape and be strong. Help people. I want to give people the heads up before anything even happens to them like I’ve joked a bit by saying ‘If someone offers you a stroke – don’t accept it.’ But I want to help people.”
“I want to read up on strokes and learn more about strokes.” I tell you that I could find some books about strokes that you could read. It would be a good exercise for you. “Yah, but I don’t like too much hidden writing to the left. It’s too hard to open books that far. Maybe some internet articles on running and stroke prevention.”
Over the last few months you have been much more of a talker and you are very willing to share your feelings. I share with you my observation. I tell you how I missed our walks that we would do with the dogs before the children were born. You reply in a fatherly way, that when you get home “we are going to have family walks, every night.” “I want them to have a happy positive experience.”
“Tara and Quinn have great potential” You feel you didn’t reach your full potential. “I have a life time of friends. They will give me strength.” After a little reflection you observe that “As we speak - new nerves are growing. There are new synapses.”
I am definitely falling further in love with you. Everything you say is music to my ears. You are strong and supportive when I need you to be yet still fragile and evolving. I want to fall headfirst with complete abandon but I am guarding my feelings a little. What if the person I see now continues to change into someone I don’t know as well?
As I leave, you say to me “Remember - Chris loves Gwen. Repeat it to yourself later today and keep saying it.” I love the words. I tell you that we should crave it into a tree somewhere, to which you reply “Not a tree, a rock … it lasts longer.”
Quinn had a good sleepover. He was a little homesick just before he went to sleep but he did it and he feels little more grown up today. He is a little more worldly. He is pretty proud of himself. As he gains his independence, you regain yours – a little every day.
Tonight, we had a small family birthday party for Maddie. She opens each present like a professional. The children and Bill had wrapped our present. There were many layers of newspaper under the gift wrap paper. She efficiently got to the prize. Farley’s present to Maddie was his first laugh.
The first is get your PEG tube out. This is already on the hospital’s to do list. They had thought that maybe it would be done this past week. So hopefully it will be done soon. This represents the last extra body part or tube in your body.
You have gained back so much in the past months. It seems like a lifetime ago that you couldn’t even regulate your own body temperature and blood sodium levels. Now you can do that and many more things. Although the list of things you need to work on seems big now, it was a very long list before. It’s getting shorter all the time.
You have maintained your weight well since the night feedings via the tube have finished. Now the tube is just maintained by flushing it a few times a day. The exit wound for the tube is a little inflamed. Your body doesn’t want it any more.
I wish I could say the same about my weight. Either there is more gravity around me lately or someone is messing with my pants. My ‘fat pants’ are tight. I don’t feel very good about myself. I know that the combination of Christmas and food and stress and more food has taken its toll. I need to get more exercise back into my life. Climbing the stairs to the fourth floor two to four times a day doesn’t really help me.
The second goal is to learn how to use the calling card. You have mastered making local calls. You even remember how to get an outside line first. Long distance calls are more difficult. You have to get an outside line, then call the calling card number then press1 for english and then enter in the PIN followed by the phone number. I found this undertaking a little challenging the first few times myself. I want you to able to call home or anywhere easily once you are the NSRC. I worry that you will feel socially isolated in Halifax by yourself. I know that you will be kept busy during the day but typically it’s the evenings that you find difficult.
You need to learn to tolerant the wheel chair for longer time periods. We were doing well at home over the holidays with you in the chair 3-4 times a day for 1-2 hours each time. Now that you are back in the hospital, you are in your bed much more. The nursing staff is not as encouraging as I am to get you in your chair. They don’t nag like a wife does.
The last thing is to work on getting you to transfer from wheel chair to the car and from the car to the wheel chair. This would make trips home from Halifax for the weekend much easily to achieve. No wheelchair bus needed. I don’t know if this is possible. I will ask the physio team next week.
I called the MacQuarries Pharmasave the other day, where I rented the lift, and booked the lift for next weekend. You have two weekends home for sure. I want to make the most of them.
This morning Marianne was in to visit you. She has been such a great help. Right from the beginning, That horrible Sunday evening, she has been there to hold the children and me, visit you and do whatever she can to lighten the load. Now, she is going to help more. When I told about my work schedule, my on call hours and how they are going to make child care a challenge, she said that she would be ‘on call’ for me in case I have a middle of the night animal emergency that I must tend too.
We are so lucky to have so many human angels in our lives.
Your roommate could not have been better chosen. The two of you are cut from the same cloth. The two of you banter back and forth, passing the hours and days away with all sorts of topics. Until today, I was mostly privy to the body function talks but it turns out that you talk about a lot more then that. Your roommate spouts out knowledge about all sorts of things. He knows a little about a lot. I don’t think his stroke has affected his memory at all.
Some of today’s topics included the difference between ravens and crows, Saint Paul contribution to the King James Bible, the historical meaning of ‘Good King Wenceslas’, Glooscap and the Mi’kmaq people and Prince Henry Sinclair journey to Nova Scotia.
The two of you share some favorite movies, The Great Escape and the Magnificent Seven. We even found time to talk about politics and homeless shelters and the origin of the word pad for a place to stay.
I can’t wait for tomorrow’s talks. Like you, your roommate had a stroke that affects his left side. He has already been to rehab but there was little more that they can do. He will be going to live with one of his daughters next week. You will be sorry to see him go. You are developing a special friendship with him, much like the friendship you have with Donald.
We talk about your goals. Short term and long term. You want to be realistic but you don’t want to lose hope. It’s too early for losing hope. It’s possible that you may not be able to return to a physical job. Your mind is still active and very capable. “Maybe I’ll go back to school” You say. “I want to help people.”
“I’m stubborn and greedy and that might help me. When I get out of rehab and I’m allowed to run, I might be so caught up in the dream of being 45, having a stroke where I almost died ... I don’t think I’m going to be so concerned about colds and stuff. I really don’t ... I will definitely eat healthy too.”
You are taking this second chance seriously.
Your resolutions for 2010 and the years to come. Get in shape and be strong. Help people. I want to give people the heads up before anything even happens to them like I’ve joked a bit by saying ‘If someone offers you a stroke – don’t accept it.’ But I want to help people.”
“I want to read up on strokes and learn more about strokes.” I tell you that I could find some books about strokes that you could read. It would be a good exercise for you. “Yah, but I don’t like too much hidden writing to the left. It’s too hard to open books that far. Maybe some internet articles on running and stroke prevention.”
Over the last few months you have been much more of a talker and you are very willing to share your feelings. I share with you my observation. I tell you how I missed our walks that we would do with the dogs before the children were born. You reply in a fatherly way, that when you get home “we are going to have family walks, every night.” “I want them to have a happy positive experience.”
“Tara and Quinn have great potential” You feel you didn’t reach your full potential. “I have a life time of friends. They will give me strength.” After a little reflection you observe that “As we speak - new nerves are growing. There are new synapses.”
I am definitely falling further in love with you. Everything you say is music to my ears. You are strong and supportive when I need you to be yet still fragile and evolving. I want to fall headfirst with complete abandon but I am guarding my feelings a little. What if the person I see now continues to change into someone I don’t know as well?
As I leave, you say to me “Remember - Chris loves Gwen. Repeat it to yourself later today and keep saying it.” I love the words. I tell you that we should crave it into a tree somewhere, to which you reply “Not a tree, a rock … it lasts longer.”
Quinn had a good sleepover. He was a little homesick just before he went to sleep but he did it and he feels little more grown up today. He is a little more worldly. He is pretty proud of himself. As he gains his independence, you regain yours – a little every day.
Tonight, we had a small family birthday party for Maddie. She opens each present like a professional. The children and Bill had wrapped our present. There were many layers of newspaper under the gift wrap paper. She efficiently got to the prize. Farley’s present to Maddie was his first laugh.
Friday January 8 – An Exponential Forrest Gump
I dropped into the hospital on the way to work to say good morning. Last night I found one of the rosewood bowls that you made. You made it before Tara was born and you gave it to your grandmother. When she died a few years later, you added it to your collection of things in your room. For the past two years it had the very prestigious job of safekeeping Quinn’s teeth.
When Quinn lost teeth while you were in the hospital, I saved them but I didn’t know where the rest of them were. At Christmas time you showed me the secret cache of teeth you had squirreled away. We reunited them.
Last night I found another small bowl you made that would be good for Quinny’s teeth. I also found a rosewood ring that you had made on the lathe. I cleaned up the rosewood bowl and ring and packaged them up with a card for the OT.
Today is her last day at the Colchester Hospital. She was covering a maternity leave and now she is moving on to another hospital. You are sorry to see her go. She has made a big impression on you over the weeks. She is sweet and caring and she is the type of young lady I think both of us hope that Tara will grow into. This was her first position as an OT after her training.
I remember my first patients and their pet parents. I think one tends to remember your firsts more vividly. They sort of set the tone of the rest of your career. I hope she had as good experience guiding you back to health as you had being guided through your recovery.
We hope to see her again in the summer when you come home.
It’s another busy day. After I see you at the hospital and drop off the present for your OT, I have to take the computer back to the repair place because I can’t get it to work. Augh I love and hate computers at the same time. It’s not a healthy relationship. The stupid computer got some sort of antivirus virus that would stop all programs. I was told that our computer didn’t have the right condom. Yep, that’s not what I want picture when I think about computers.
Then off to work. Part way through the morning I got a phone call from you telling me that you have a date for rehab! A date! January 25th! Three weekends and two weeks away. I was hoping that it would be sooner but, with the strike looming, I am happy with any date.
This weekend I’m on-call so you have to stay in the hospital. But the next two weekends, you can come home. A little more family time to recharge you in your own home before the next stage of your recovery will be time well spent.
After work, I visit you again for a few minutes. You are worried about what will happen if you don’t show any improvement after a few weeks at the NSRC. “Will they send me home? Maybe I’ll be sent to a long term care facility.” I assure you that the rehab will make a difference. Possibly a big difference. But regardless, just as we got through the last few months, we will get through the next ones and there will be magic in the time you spend there. Despite my pep-talk, you remain worried about your future.
The east wing of the fourth floor houses people who are waiting. The patients are all waiting to go some where. Waiting for a spot to open up at a long-term care facility, waiting to go home, waiting for rehab and some are even waiting for death. You are waiting too but you don’t want to go anywhere else but rehab and home.
I pick up Quinn and drop him off at his best friend, Luke’s, house for a much-anticipated sleepover. He noted this morning that this is his first sleepover at a friend’s house. He feels very grown up about this. He packs his gear in record time. He almost forgot to kiss me good bye. But he didn’t. I got the super Quinn hug. It will last me all night.
Then I pick up Tara from her choir and ukulele. I get her packed for her sleepover at Juanita’s house. Juanita and Tara want to play some math games tonight. Tara loves math and she really likes cool math tricks. Tricks like: Pick any number and double it. Then add six and then divide by two. Now subtract the original number from the product and the answer is always three. Isn’t that amazing?
She showed me this trick yesterday. When I showed her how the trick worked, she was hooked. Now, Juanita, who has a better math mind then me, is going to help her figure out some new tricks. I know it seems a little nerdy but Juanita, Tara and I think it’s great fun.
While we wait for Juanita to pick up Tara, you tell her the big news about rehab. She is very happy. You tell her that you are going to work very hard. You are “going to have legs of steel” and “You ain’t seen nothing yet. I’m going to be a brick shithouse and an exponential Forrest Gump”. “I will go to Boston again.” Tara commends you on your positive attitude. It’s hard to believe that you were worried a few hours ago about your future.
Your good attitude will carry you far in the next leg of your journey.
It’s just me and Annie, Himmy and Barbarella in the house tonight. The house feels very empty. At least the computer works now. I get caught up with correspondence. There are some interesting emails from a few different friends you haven’t seen in a while. They are planning to visit you next week.
When Quinn lost teeth while you were in the hospital, I saved them but I didn’t know where the rest of them were. At Christmas time you showed me the secret cache of teeth you had squirreled away. We reunited them.
Last night I found another small bowl you made that would be good for Quinny’s teeth. I also found a rosewood ring that you had made on the lathe. I cleaned up the rosewood bowl and ring and packaged them up with a card for the OT.
Today is her last day at the Colchester Hospital. She was covering a maternity leave and now she is moving on to another hospital. You are sorry to see her go. She has made a big impression on you over the weeks. She is sweet and caring and she is the type of young lady I think both of us hope that Tara will grow into. This was her first position as an OT after her training.
I remember my first patients and their pet parents. I think one tends to remember your firsts more vividly. They sort of set the tone of the rest of your career. I hope she had as good experience guiding you back to health as you had being guided through your recovery.
We hope to see her again in the summer when you come home.
It’s another busy day. After I see you at the hospital and drop off the present for your OT, I have to take the computer back to the repair place because I can’t get it to work. Augh I love and hate computers at the same time. It’s not a healthy relationship. The stupid computer got some sort of antivirus virus that would stop all programs. I was told that our computer didn’t have the right condom. Yep, that’s not what I want picture when I think about computers.
Then off to work. Part way through the morning I got a phone call from you telling me that you have a date for rehab! A date! January 25th! Three weekends and two weeks away. I was hoping that it would be sooner but, with the strike looming, I am happy with any date.
This weekend I’m on-call so you have to stay in the hospital. But the next two weekends, you can come home. A little more family time to recharge you in your own home before the next stage of your recovery will be time well spent.
After work, I visit you again for a few minutes. You are worried about what will happen if you don’t show any improvement after a few weeks at the NSRC. “Will they send me home? Maybe I’ll be sent to a long term care facility.” I assure you that the rehab will make a difference. Possibly a big difference. But regardless, just as we got through the last few months, we will get through the next ones and there will be magic in the time you spend there. Despite my pep-talk, you remain worried about your future.
The east wing of the fourth floor houses people who are waiting. The patients are all waiting to go some where. Waiting for a spot to open up at a long-term care facility, waiting to go home, waiting for rehab and some are even waiting for death. You are waiting too but you don’t want to go anywhere else but rehab and home.
I pick up Quinn and drop him off at his best friend, Luke’s, house for a much-anticipated sleepover. He noted this morning that this is his first sleepover at a friend’s house. He feels very grown up about this. He packs his gear in record time. He almost forgot to kiss me good bye. But he didn’t. I got the super Quinn hug. It will last me all night.
Then I pick up Tara from her choir and ukulele. I get her packed for her sleepover at Juanita’s house. Juanita and Tara want to play some math games tonight. Tara loves math and she really likes cool math tricks. Tricks like: Pick any number and double it. Then add six and then divide by two. Now subtract the original number from the product and the answer is always three. Isn’t that amazing?
She showed me this trick yesterday. When I showed her how the trick worked, she was hooked. Now, Juanita, who has a better math mind then me, is going to help her figure out some new tricks. I know it seems a little nerdy but Juanita, Tara and I think it’s great fun.
While we wait for Juanita to pick up Tara, you tell her the big news about rehab. She is very happy. You tell her that you are going to work very hard. You are “going to have legs of steel” and “You ain’t seen nothing yet. I’m going to be a brick shithouse and an exponential Forrest Gump”. “I will go to Boston again.” Tara commends you on your positive attitude. It’s hard to believe that you were worried a few hours ago about your future.
Your good attitude will carry you far in the next leg of your journey.
It’s just me and Annie, Himmy and Barbarella in the house tonight. The house feels very empty. At least the computer works now. I get caught up with correspondence. There are some interesting emails from a few different friends you haven’t seen in a while. They are planning to visit you next week.
Thursday January 7 – Standing with a Stripper Pole!
This morning I get educated about the content of a typical ‘guy’ conversation. Apparently, guys like to talk about body functions. It’s not just brain-damaged guys. It’s men in general. When Joe came in to say Hi, he jumped right into the BM conversation that you and your room-mate were still having.
When I commented that I had no idea that men were such ‘deep’ thinkers, Joe explains that the real secret about men is that when a man does the right thing at the right time – it is like a moment of Nirvana. Unfortunately, a man only recognizes it after the fact. “Women are lucky” He says . “Women just have more strategy then men.”
I met the stroke coordinator in the hallway. She was in-training to take blood samples today. Being a new resident to Nova Scotia, from England by way of Yellowknife, she is getting used to the unique quirks of a Nova Scotia hospital system. She is very conscious of the fact that she is the ‘new kid on the block’ and has minimal connections. When she talks to the NSRC, she is careful not to ruffle any feathers. I understand her feelings. In this situation the squeaky wheel gets ignored until it’s the squeaky wheel time to come to the NSRC. I doubt that there would be any repercussions for you by being a squeaky wheel, but I can see that she wants to develop good working relationships with her colleagues on the other side of the rehab door.
When she called the admission office at the NSRC and got right through to the lady in charge, she was impressed. She was very pleased to report to me that you have been promoted to fourth on the list from eighth. She feels that means you will be a January admission, but not next week. Three people, she said, were being discharged this week. That would put you to the top of the list. Sadly, the fourth person, who you would replace, is not ready for discharge yet.
When I asked how the strike could affect this status, she said that if the fourth person is waiting for a bed in a hospital outside the Halifax area, then you could be waiting longer due to the strike!
Crap! We have to focus on the positive at least they still think that it will be January.
You got to do something new in physio today. It involves a pole that looks a little like a stripper pole with a small addition.
The team took you to the physio room on the second floor. There, they installed a ceiling to floor pole. At waist level and chest level the pole is covered with foam grips. And at the waist there is a 15-18’ horizontal pole that comes out from the vertical pole. Your chair is pulled up to the pole so that your feet can rest squarely on the ground. With you right hand you reached up and grabbed the pole at a point that is level with your head when you are sitting. From this position you pulled yourself up to a standing position! The physio person wraps the fingers of your left hand around the horizontal pole.
This is all done under the watchful eye of your physio team. One person spots you to the right and the other spots you on the left and guides your left side up without pulling you up. Once you are standing, she braces your knee and thigh on the left to allow you to stand with your weight more evenly distributed. You hold this position, straighten your back and tuck in your butt. You are standing tall! You did this several times.
When you stand like this we are almost eye to eye with you standing a little taller! I felt like giving you a big hug but I restrained myself. I didn’t want to distract you from your job.
You ask if you can have a pole installed in your room so that you can practice. You said “I’d only do 1 or 2 every hour.” “Yah, that’s what I’m afraid of, you will tire out.” She tells you.
You are still having a hard time thinking that it is possible that you ever did anything with your left side. You want to see photos of yourself in action.
Your OT person is finished working at the Colchester Hospital. She is moving to another hospital in NS. Her last day is Friday. She has inspired you and mentored you through some of the infancy of your recovery. Her influence on you has been very positive. We will both miss her. You want to give her a little present before she leaves. You want to give her something that you made with both your hands.
Woodworking is a part time passion for you. You spent many hours in our unheated shed (at our old home) in the dead of winter turning things on the lathe. Bowls, snowmen, Christmas trees, pen casings, table legs, and little wooden baseball bats. If the finished product was round and it could be made of wood, you would try to turn it. You experimented with all sorts of wood. Rosewood and cherry are two of your favorites.
You caught this passion from your good friend, Donald. Donald, who will be 90 this July, was a great influence and mentor. When Donald sold his house and downsized his belongings last year, you ‘inherited’ a lot of his tools. For months, our garage was filled to over flowing with things from Donald’s. The huge pile of things really disturbed my sense of order. There was no room to find anything, let alone work in the garage.
After much discussion, we came to the decision to build a workshop. It would be heat-able and have all the electrical and ventilation things that a workshop should have. You weren’t sure if this was a good idea, but I could see the joy you had working on the lathe and building things and I can see that our children have inherited this creative urge. Even I like to build things. Although after putting my fingers through the table saw twice … on the same day, I am a like shy of the big machines.
A workshop could be a shared family passion. We built it last fall and filled it up with all the equipment that you had acquired over the years. The last items went into it the week after your stroke. Now we have a building filled with things, in a tangled heap. With a little time and organization, it has the potential to be a great shop. That was going to be our Fall 2009 project.
It’s still full of things waiting for you to come and make sense of them and start creating again. The day after your stroke, I wanted to burn the whole building to the ground. It was a reminder of what we lost. But within a few days, I realized that it could be a place of healing for you. Now I’m very excited about the possibilities. We just need to see you connect with your left.
Drs. Walling and McNeely were hesitant about function returning to your left side arm and vision returning to your left field. They were more optimistic about walking.
When I suggest to you that this maybe a bigger challenge then walking, you say “Give up – I don’t know that word”.
Tonight, I will look for something you made as a present for your OT. It is fitting to find something that you made before your stroke, because it will represent who you were and who you hope to be … your future.
In the afternoon, I did some errands while you napped. When I got back you were excited to tell me that you are now officially third on the waiting list. Still no actual date.
I brought my ipod to the hospital with me. It is filled with pictures from the last few years. There were many pictures that showed you using you left side. My favorite pictures were taken in Boston last spring. Our hotel was downtown, handy to the Boston Commons. In the commons, there is a baseball diamond. In April, it lay there empty and ignored. Although we didn’t have any baseball equipment, you and the children played an imaginary game of baseball. I took pictures … lots of pictures. It was a great day. Great Memories.
Among the pictures is one of you bunting a ball and Tara trying to run you down at home plate to get you out. You arms were high in the air, in the shape of a ‘V’ for victory, as you step onto the home plate.
You are impressed with the picture but you are puzzled by your lack of memory for the physical feeling of using your left side.
Social worker stops by and you ask if she thinks it wise for you to run again after your
recovery. She suggests that you ask the opinion of the people at the NSRC. The fact is that the reason for the stroke is a mystery. There is no crystal ball. No one would have been able to predict your stroke. Likewise, no one could say with certainty that it won’t or will happen again. There is no crystal ball. Life is full of risks.
You wonder about other risks related to the stroke. Dr. Walling had said a long time ago, that you would have a MRI in the future, when your brain has healed and finished scarring. After the scarring is done, there will be a little distortion of how your brain is shaped within your skull.
The ventricles are an open space in the brain into which your blood clot had settled. After healing, they may be shaped differently. This could cause fluid building up and increase the pressure on your brain. Getting a MRI will allow the neurology team to have a baseline. They can compare with if there are problems in the future.
Tonight, I tried to get the repaired computer working again after the children were in bed. It didn’t start up correctly. I’ve begun to realize that I have a small addiction to the conveniences that a computer offers. No email for over a week.
I am starting to feel disconnected because of my technical difficulties. This experience gives me a tiny bit of insight into how frustrated you must be at times when you feel disconnected. I didn’t appreciate a fully functioning computer until I didn’t have it … you must feel the same way about your brain.
When I commented that I had no idea that men were such ‘deep’ thinkers, Joe explains that the real secret about men is that when a man does the right thing at the right time – it is like a moment of Nirvana. Unfortunately, a man only recognizes it after the fact. “Women are lucky” He says . “Women just have more strategy then men.”
I met the stroke coordinator in the hallway. She was in-training to take blood samples today. Being a new resident to Nova Scotia, from England by way of Yellowknife, she is getting used to the unique quirks of a Nova Scotia hospital system. She is very conscious of the fact that she is the ‘new kid on the block’ and has minimal connections. When she talks to the NSRC, she is careful not to ruffle any feathers. I understand her feelings. In this situation the squeaky wheel gets ignored until it’s the squeaky wheel time to come to the NSRC. I doubt that there would be any repercussions for you by being a squeaky wheel, but I can see that she wants to develop good working relationships with her colleagues on the other side of the rehab door.
When she called the admission office at the NSRC and got right through to the lady in charge, she was impressed. She was very pleased to report to me that you have been promoted to fourth on the list from eighth. She feels that means you will be a January admission, but not next week. Three people, she said, were being discharged this week. That would put you to the top of the list. Sadly, the fourth person, who you would replace, is not ready for discharge yet.
When I asked how the strike could affect this status, she said that if the fourth person is waiting for a bed in a hospital outside the Halifax area, then you could be waiting longer due to the strike!
Crap! We have to focus on the positive at least they still think that it will be January.
You got to do something new in physio today. It involves a pole that looks a little like a stripper pole with a small addition.
The team took you to the physio room on the second floor. There, they installed a ceiling to floor pole. At waist level and chest level the pole is covered with foam grips. And at the waist there is a 15-18’ horizontal pole that comes out from the vertical pole. Your chair is pulled up to the pole so that your feet can rest squarely on the ground. With you right hand you reached up and grabbed the pole at a point that is level with your head when you are sitting. From this position you pulled yourself up to a standing position! The physio person wraps the fingers of your left hand around the horizontal pole.
This is all done under the watchful eye of your physio team. One person spots you to the right and the other spots you on the left and guides your left side up without pulling you up. Once you are standing, she braces your knee and thigh on the left to allow you to stand with your weight more evenly distributed. You hold this position, straighten your back and tuck in your butt. You are standing tall! You did this several times.
When you stand like this we are almost eye to eye with you standing a little taller! I felt like giving you a big hug but I restrained myself. I didn’t want to distract you from your job.
You ask if you can have a pole installed in your room so that you can practice. You said “I’d only do 1 or 2 every hour.” “Yah, that’s what I’m afraid of, you will tire out.” She tells you.
You are still having a hard time thinking that it is possible that you ever did anything with your left side. You want to see photos of yourself in action.
Your OT person is finished working at the Colchester Hospital. She is moving to another hospital in NS. Her last day is Friday. She has inspired you and mentored you through some of the infancy of your recovery. Her influence on you has been very positive. We will both miss her. You want to give her a little present before she leaves. You want to give her something that you made with both your hands.
Woodworking is a part time passion for you. You spent many hours in our unheated shed (at our old home) in the dead of winter turning things on the lathe. Bowls, snowmen, Christmas trees, pen casings, table legs, and little wooden baseball bats. If the finished product was round and it could be made of wood, you would try to turn it. You experimented with all sorts of wood. Rosewood and cherry are two of your favorites.
You caught this passion from your good friend, Donald. Donald, who will be 90 this July, was a great influence and mentor. When Donald sold his house and downsized his belongings last year, you ‘inherited’ a lot of his tools. For months, our garage was filled to over flowing with things from Donald’s. The huge pile of things really disturbed my sense of order. There was no room to find anything, let alone work in the garage.
After much discussion, we came to the decision to build a workshop. It would be heat-able and have all the electrical and ventilation things that a workshop should have. You weren’t sure if this was a good idea, but I could see the joy you had working on the lathe and building things and I can see that our children have inherited this creative urge. Even I like to build things. Although after putting my fingers through the table saw twice … on the same day, I am a like shy of the big machines.
A workshop could be a shared family passion. We built it last fall and filled it up with all the equipment that you had acquired over the years. The last items went into it the week after your stroke. Now we have a building filled with things, in a tangled heap. With a little time and organization, it has the potential to be a great shop. That was going to be our Fall 2009 project.
It’s still full of things waiting for you to come and make sense of them and start creating again. The day after your stroke, I wanted to burn the whole building to the ground. It was a reminder of what we lost. But within a few days, I realized that it could be a place of healing for you. Now I’m very excited about the possibilities. We just need to see you connect with your left.
Drs. Walling and McNeely were hesitant about function returning to your left side arm and vision returning to your left field. They were more optimistic about walking.
When I suggest to you that this maybe a bigger challenge then walking, you say “Give up – I don’t know that word”.
Tonight, I will look for something you made as a present for your OT. It is fitting to find something that you made before your stroke, because it will represent who you were and who you hope to be … your future.
In the afternoon, I did some errands while you napped. When I got back you were excited to tell me that you are now officially third on the waiting list. Still no actual date.
I brought my ipod to the hospital with me. It is filled with pictures from the last few years. There were many pictures that showed you using you left side. My favorite pictures were taken in Boston last spring. Our hotel was downtown, handy to the Boston Commons. In the commons, there is a baseball diamond. In April, it lay there empty and ignored. Although we didn’t have any baseball equipment, you and the children played an imaginary game of baseball. I took pictures … lots of pictures. It was a great day. Great Memories.
Among the pictures is one of you bunting a ball and Tara trying to run you down at home plate to get you out. You arms were high in the air, in the shape of a ‘V’ for victory, as you step onto the home plate.
You are impressed with the picture but you are puzzled by your lack of memory for the physical feeling of using your left side.
Social worker stops by and you ask if she thinks it wise for you to run again after your
recovery. She suggests that you ask the opinion of the people at the NSRC. The fact is that the reason for the stroke is a mystery. There is no crystal ball. No one would have been able to predict your stroke. Likewise, no one could say with certainty that it won’t or will happen again. There is no crystal ball. Life is full of risks.
You wonder about other risks related to the stroke. Dr. Walling had said a long time ago, that you would have a MRI in the future, when your brain has healed and finished scarring. After the scarring is done, there will be a little distortion of how your brain is shaped within your skull.
The ventricles are an open space in the brain into which your blood clot had settled. After healing, they may be shaped differently. This could cause fluid building up and increase the pressure on your brain. Getting a MRI will allow the neurology team to have a baseline. They can compare with if there are problems in the future.
Tonight, I tried to get the repaired computer working again after the children were in bed. It didn’t start up correctly. I’ve begun to realize that I have a small addiction to the conveniences that a computer offers. No email for over a week.
I am starting to feel disconnected because of my technical difficulties. This experience gives me a tiny bit of insight into how frustrated you must be at times when you feel disconnected. I didn’t appreciate a fully functioning computer until I didn’t have it … you must feel the same way about your brain.
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