Monday February 1 – One Hand to Two Legs

This morning I couldn’t find you. You were supposed to be in OT, but you weren’t. While looking for you, I did find Dr Askari. She answered a lot of the questions and concerns that I had about your care. There have been many little times that have cropped up and collectively – they have created a bit of anxiety for me lately. Dr. Askari was great to patiently answer all my concerns.

After my talk with Dr Askari, you found me looking for you. It turns out that you had a date with the bathroom and couldn’t get away in time for the OT appointment. Dr Askari comes in to visit you. You ask about your MRI and you felt if you could see it, then you would understand more about what is going on inside of you. “It showed a big hemorrhage.” she said. You feel that the measure of damage in the MRI would reflect the measure of God’s estimation of you as a person.

You still feel that God is punishing you for your crimes. God is not vengeful. God’s role with you is to help you through this. Help you find a way to grow through this experience. God saved you because you are needed here and you have more to learn. This is not punishment, this is an opportunity for growth.

You tell Dr. Askari that you don’t want to stay longer then March 11 because there is so much to do when you get home. She emphasizes that this date is tentative. A lot depends on your improvement over the next few weeks. She has a very patient way about her.

At your PT session, they put a special vibrating machine on your arm to help with stimulating some feedback to your brain from the muscles. This is another way to help wake up your brain and allow the opposing muscles to relax and stretch. You feel the vibration in all the spots that the PT puts it. Until now, it seems like the PT has been concentrating on your balance and leg. I am heartened to see that they are working with your arm some too.

It was explained to me that the OT concentrates on the arm and hand, whereas the PT works with the leg. It’s my impression that PT tries to restore function whereas OT helps you learn to deal with your dysfunction. The two disciplines seem to work closely together.

You joke with the PT’s that you have been started on a new clot buster. “New clot buster? But you had a hemorrhagic stroke – you shouldn’t be on a clot buster!” she says a little surprised. You didn’t let her response prevent you from delivering the punch line. “Well they did! – It’s Draino!” The PT student smiled.

It’s so good to see your humour emerging.

You get many comments about your nail polish. “I don’t know if I can work with someone with nails like that!” your PT says. You smile and explain that you had a make over on the weekend. Hair cut and nails.

As you walk between the parallel bars I talk with another patient. She has been here since November. She had 2 strokes in less then 24 hours. Like you, she was left with left-sided weakness. She is walking now with a leg brace too but she doesn’t need the parallel bars any more. Unlike your big clumsy leg brace that fits over your shoe, her brace is small and fits inside her running shoe. The OT made it especially for her. Both the leg brace designs do the same thing. They lock the ankle in a fixed position so that your knee is steadier.

As I talk with her, I realize that she is a very resilient gal. She looks to be in her late twenties. She is a RCMP officer. She has a very calm way about her with undercurrents of a feisty “I know I can” attitude. I hope you two become friends.

Your PT says that the afternoon sessions will start tomorrow. At these sessions you will do some work on the kinetron along with some other activities.

After PT we go on a coffee run. We talk along the way. You are frustrated that your time here may be extended. If it is – it’s not a failure – it’s a success – it means there maybe more that they can do with you. It’s still early to know what parts of you are going to wake up. More could still come back. We have to be patient.

We both agree that weekend passes would be great – it will make this experience seem a little more like a job with breaks between where you can practice what you have learned rather then a prison sentence.

You told me that you would make an effort to write down your thoughts and feelings. I applaud the idea. This therapy has proven to be a very good exercise for me, I think it will help you too.

One of the other wives on the floor talked to us as we made our way back to your room. Her husband is an enthusiastic cyclist. He was hit by a car, while cycling, and sustained significant head injuries. His wife expressed frustration with his rehab experience. It turns out we have a lot of the same concerns.

Despite this, she is a tireless vocal advocate for her husband. She shares with me her secret. “I have a flame inside that keeps me going” she says. “I have to protect it so that it doesn’t go out. People try to blow it out but I won’t let them.” Her husband still has a very long road to travel before he gets home. He is blessed to have her by his side. She is an inspiration and a source of strength.

Fran stopped into visit. She is on her way to Ottawa for a meeting. She decided to fly via Halifax to see you. You are happy to see her. She has been a pillar of strength for both of us. We eat lunch together and you share some of your dark thoughts about your situation. “I deserve this stroke. I was a bad person.”

You wonder if the children will ever see you the same way. Fran points out that children are resilient. They see you for who they know you to be. A loving father who is by their side. They will not see your leg brace or wheelchair or arm brace. They will see their Dad.

Fran visits with you while I go off to return some movies and get the weekly supply of coke and coffeemate. When I left the NSRC, I didn’t realize that I was wearing my stress on my face so much today. Fran saw it. At the video store the clerks saw it too.

There was one movie that we hadn’t seen yet. ‘Stand By Me’. When I returned the movies I was conflicted as whether I would return them all or just to two we’d seen. We had both enjoyed this movie when it came out in the 80’s. I thought it would be a good story for the children.

I wrestled aloud with the idea whether to keep it until the weekend and have it a day late or just return it now and not let the children see it. The clerk is very nice and offers me a mail-in envelope. Oh gosh, now the decision is just getting harder. He sees me struggling to hold it together. “I’ll put a note in the computer and you can just return anytime this weekend.” He says. I thank him and start to leave. Then I realized the valuable resource I was about to walk away from. I went back in the store. It wasn’t busy and there were two clerks behind the desk. I tell them that I was looking for movies that would be motivational. I empty my heart with the details of your stroke and your marathon to come back to us. “Chris is the movie-guy in our family. He has good taste and always gets good movies. I am not very good at this job.”

You still tease me about the time I rented the ‘Great Escape’ twice within a month. One day after work, I thought I would surprise you with a movie. I carefully looked over the selections and came across the ‘Great Escape’. It looked good and I was certain you would like it. It turns out that I was right. You did like it … the first time you saw it … with me a few years before. But we watched it anyway. A few weeks later I had another opportunity to rent a movie. Still basking in the glow of the successful movie selection the last time, I went to the store confident that I could find a good movie.

I had completely forgot what movie that I had rented. So when I came across the copy of the ‘Great Escape’ I thought ‘Wow Chris likes that type of movie, I’ll get it.’ So I rented it again and I didn’t even realize Déjà vu aspect of the situation until you pointed it out to me. You have reminded me of this many times since. This happened long before the children entered our lives, but they have heard the story. It now is a permanent part of our family history. For us it’s like a very old private joke between us.

You have always been better at picking movies because to me a movie is just a movie. A way to spend a few hours relaxing. For you a good movie is a real experience to be cherished. Good movies, especially ones based on true stories are powerful medicine to you.

I enlist the clerks’ to find movies that you might find moving and inspirational. “Inspirational movies where the little guy beats the odds with nothing but passion and determination.” I said. In about two minutes I have a list of movies that they thought of off the top of their heads! Cinderella Man, My Left Foot, The Loneliness of the Long Distance Runner and Prefontaine.

Back at the hospital, Fran approaches your prognosis from a different angle. Being a marine biology scientist, she tends to approach things in life using statistics and data as the foundation for understanding. She points out that you were 1 of 2 people who survived out of 700 similar cases. That’s a very small sample size to draw conclusions on. The fact is, the medical community doesn’t have a lot of information about your type of brain damage. They can only speculate how you will turn out. Only time will tell.

We have to remember that the medical community first thought about you was this is serious. They were right. Their second thought was that you would die. They were wrong. They are only right half the time.

The OT assistant puts your left hand and arm through it’s range of motions. Both the OT and her assistant comment on the beautiful blue nails that you have. As your arm gets stretched, I talk with your OT. She feels that you left side neglect is improving. You scan better to the left. I struggle with the concept because it seems to me that we should keep challenging you. I have been setting up your food tray so that the interesting things are to your left. Lately you have found all your favorite foods on the tray. The OT feels you are picking up the left side more no matter what we do in terms of arranging your environment. Last week, when the OT observed you do your self care. When you bathed you washed both sides without a prompt. You have improved.

The OT feels that to change beds at this point may not really help you. You need to learn about the randomness of the world. She is also concerned that it would be harder for you to transfer out of your bed to your chair if you were across the room.

I ask about the role of recreational therapy. The term sounds interesting but I haven’t seen any specific recreational activities that allow you to develop skills. I would have thought that assistance in reading might be a goal. Or playing games that require you to use as much field of vision as possible. But so far all I’ve seen of RT is a word game and name that tune games. Both of which you did well. The other role that the RT volunteers play for you is that of your coffee Sherpas. They help you get coffee ... coffee with cream. Not very therapeutic.

Rehabilitation’s goal is to get you to a point of independent living. The OT describes what independent looks like. You express your concern that you don’t want to be a burden but in the same breath you wonder aloud how you would be able to contribute to the wellbeing of the family. Yesterday you spilt a large coffee over yourself, not once but twice within hours of each other. “If I can’t keep a coffee upright, how am I going to cook a meal for the family?” You said.

“Are you willing to accept that you will need adaptive aids to help you do things.” The OT asks. “No” you say “I don’t want to accept them but I know that I must accept them.” She rallies you with the thought that adaptive aids are possibly ‘for now’ but not ‘forever’. As time goes, you might be able to cast them aside. Adaptive aids allow you more independence.

“I want to be a functional part of our home.” You said.

We make a list of short term and long term goals to enable you to function at home. One of my concerns is that you will not be able to climb and descend stairs. With our home, there are three sets of stairs. We all love our house. It’s a home. I don’t want to move. You don’t want to move.

I come to realize that the OT is a part time tight-rope walker. She has the tricky job of finding the balance between be realistic and hopeful. Too much of either is a dangerous thing.

After the OT meeting, Kerry comes to visit. Kerry has been following your story from the beginning. She had never met us before. We knew of each other through the children’s youth fun run. We have been involved in this event the last two years and Kerry is instrumental in organizing it. Kerry also a runner who is sidelined with an injury.

She admits that she has a great job. “I get to talk to kids about healthy living.”
You want to make a difference for others. “Maybe if I talk to kids about my smoking, maybe I can change one child’s mind about smoking then it would be worth it.”

Kerry tells us about an acquaintance she knows from her spin class. He is a student who is doing some work on left side neglect for a master’s paper. She thought it involved video games to help stimulate the right side of the brain. I make a mental note to find out more about it.

If rehab is the training for the marathon, as the doctor said, then what does your training look like now? Kerry said that satisfaction of training for her is knowing that she was tough enough mentally to accomplish it. I think about your training. The real challenge is the mental part. The mental game of challenging yourself to achieve a goal. That’s the hard part. “It’s hard to take the psyche of what you are used to being as a person and suddenly overnight change.” She says.

As we talked, I removed your nail polish. Kerry has a friend, Paul who is special. He survived and thrived as a Para-Olympian in sailing. He is an inspiring individual. He won a gold medal in the last Olympics. She hopes to arrange a meeting between you and Paul. Paul had to come to terms with his disability and at some point he decided to not let his disability to define him. As a result he has thrived. This is something that you need to do.

Today seems like it was a good day. You were in your chair the whole day and you didn’t watch TV at all! You decided that from now on, the obstacles that you come across – you are going to take as challenges. This is your epiphany for the day. That’s Progress!

Tonight I removed the nail polish from Quinn’s nails. He got teased today about it. He doesn’t feel that bad about it but he would rather not be the subject of teasing. So together we remove it. I tell him that you got your nail polish removed too. I said that you were teased too. He feels better that he is following your lead. You are still a major influence in his life.

Valerie is here tonight to cover me while I’m on call. The other day, Val asked me how I decided on a life plan. I have always been fortunate to be able to see my future. So far everything I have seen has come true. Until now. I had hoped that as the children got older, we could travel and I could work as a veterinarian for short periods of time.

It is like we got off the marathon course. Now we have to refocus the life plan. I think that I can see a way through all this for me. By finding my path, perhaps I can help you find yours. Together, we will get through this.

It’s funny how little things that happen throughout the day can hold such meaning later at the end of the day. Tonight, I ordered the book that the OT suggested called ‘One Handed in a Two Handed World’. She had lent me her copy of it and said it had a lot of useful tips on using one hand. You weren’t thrilled with the book. You didn’t even look at it when I was there.

Tonight I was on the internet, looking for it. As I looked, I found another book written by the same author - ‘Teaching Me To Run’ by Tommye K. Mayer. ‘Teaching Me To Run’ is about Tommye’s post-stroke struggle to learn to run again. Finding this book makes me believe that it must be a sign. I thought I was past the ‘looking for a sign’ stage, but apparently, I’m not.

I decided to order both the books. We will start with one hand and move to two legs.

NOTE TO READERS: Chris has always been the driving force behind the movies that we watch. Now I need help to find the movies that he would find inspirational and motivational. If you have a movie title that you reach for in your mind when you are in a bad spot please post the title in the comment section of the blog or email me at: ccashen@eastlink.ca, so that I may rent it.