Sunday, January 31, 2010

Friday January 29 - Recharge and Re-focus

What has amazed me about this journey to date is how timely things are. The timing of so many aspects of your stroke has been good. By having the stroke in August meant you got to come home for Christmas, You get into rehab and get settled by the time I go back to work full time. Visits from family and friends have been well timed to help you in your recovery.

The school got cancelled part way through the day. I picked Tara and Quinn early from Karen’s house. We talk about your progress and the gut feeling crystal ball prognosis given to us. Talking it out helped me realize that I have to live in two camps at the same time. I need to look at the present as the reality of the day. Nothing is going to change your condition substantially in the short term. I must live there and plan for it and live with it. At the same time, I must keep my eyes open and on the horizon to look for the possibilities of the future. This is going to be an acquired skill. I am starting to practice today. This is what will maintain my sanity.

Two of your roommates are going home this week. You have a new roommate today. You get to show the ropes to him. You are not the new kid on the block anymore. Maybe by caring for someone else, you can expand beyond your self-pity.

Yesterday I got a card to thank the Millbrook Youth Group for their generous donation that they gave us at Christmas time. You composed a message to write in the card. We had decided that a copy of the movie ‘Pay it Forward’ would represent a small token of our gratitude. In the card you wrote: “It always amazes me to see the depth of generosity in this world we live in, when we strive to care more for others than ourselves. Thank you guys for your incredible depth of caring. Keep Paying it forward! Chris.”

There is nothing wrong with your ability to put words together. I would had to look up to see if ‘than’ is than or then. I’ve always had trouble with that word.

Martha, your best friend from Ottawa, came today for the weekend. Her visit is perfectly timed. She has a calm and levelheaded way about her. She can help you through this time. I am nearly exhausted trying to keep you up emotionally so you can come to terms with your short-term future. I try to hide my fears and worries from you, but I’m not good at it and you are very perceptive. You can read me like a billboard sign. I worry that my feelings are going to drag you down. I need a little break from being your primary cheerleader. I need to recharge and refocus.

We get home just before dark. I started to shovel out the driveway. I had just got a thin strip just wide enough to accommodate the Honda, when a neighbor drove home and saw me. The next thing I know, he is riding down the street on his four-wheeler with a plow on the front and a scrapper on the back. In minutes, my knight in shining armor had the entire driveway done. “We have a snow fairy” I tell the children.

Slowly the children and I reclaim the house back from Christmas. This is a record. I have always been slow to move away from Christmas mode other years. This year the reason for being slow is different. It isn’t that I’m too busy, although I am busy, or that I’m too lazy, sometimes I’m that too. The reason that I have been slow this year to move on from Christmas is because Christmas represented a cherished family time and a time where I still had a strong feeling of potential recovery for you – I didn’t want to let go of that feeling.

I’m ready to let go now. Not because I don’t see potential for more recovery but because I can see the next step to that potential. As with most things in my life, if I can see it, I can work at making it happen. I just need to recharge and re-focus on the next step.

Thursday January 28 – Grief in all Flavours

Your OT session is an hour earlier today. I get you dressed and we rush down stairs. To the OT floor. The OT is working on transfers. From your chair to the bed or another surface. You get positioned so that you transfer to a new sit on your right. Transferring to your right side (strong side) is easier. The OT helps you by steadying your left leg and bracing your knee from bending when you shift your weight forward. You practiced this many times from chair to bed and from bed to chair.

The OT’s want you to learn to transfer to your right and back the other way (to your left) so that you can transfer both ways. There will be situations, like a car or in a bathroom where there is minimal space to maneuver. These are times that you will have to transfer towards your weak side. The OT said that you would get to practice transfers to a car that they have set up in the OT department. You will get to do this when you get better at this.

This session hit you hard. You are envisioning needing someone to help you do all the basic things like going to the bathroom. It is hard to imagine much independence at this stage. “This is your reality now” I say “but it may not always be the case.” You will learn a new way to independence. We will have to redefine what ‘full’ and ‘normal’ life will look like. All we can do is accept the reality of the moment. We can still continue to look forward to the future and what it might bring – but to be happy now, we have to accept the moment as it is.

You feel that you deserved the stroke. This is Karma. Karma for what? I ask. “For being a bad person.” You say. You are not a bad person, you did not deserve this stroke this was an event that you didn’t deserve. No one deserves a stroke. This is a negative attitude. You have to stop thinking that way and think about what gifts the stroke has given you not what it has taken away.

You talk about choices. If you had a choice – you wouldn’t be here. This thought is too much to bear for me. “You can not be a quitter” I tell you. We are counting on you. I am counting on you and the children are counting on you. I need you and they need their father. Bad things happen to good people and you deserve to have a life and find happiness.

You try to cut me loose. “You didn’t sign up for this.” You said. “You don’t have to stay with me.” All I could do was shake my head and say that I have been thinking about this reality a lot longer then you have, and I’m still here. I’m not going anywhere. I will be by your side … your left side.

You ask about the journal. You maintain that it should be a book. I have to agree with the new developments, we need a project that will keep us thinking forward and growing, not thinking backward and regressing.

Dave and Deanna, friends from the church, sent you an envelope full of inspirational quotes. You read through them all and put aside your favorites. Lance Armstrong said “Pain is temporary but quitting lasts forever.” I can’t think of any need in childhood as strong as the need for a father’s protection. You can still do that“ It doesn’t matter how slowly you go as long as you do not stop.” Confucius. Any man can be a father, but it takes a special man to be a Dad. The perfect run the wind at your back, the sun in front of you and your friends by your side.

This was a brilliant idea and very timely. Thoughts like this are exactly what you need now. It’s exactly what I needed too. Thoughts like these, which come from people who have had adversity in their life and faced it and thrived despite it, feed our souls with positive energy.

Your tone changes from making the ultimate decision to finding ways to cope. “I can make things that will make it easier to do transfers and life easier. I haven’t walked yet but I plan on walking, even if it’s an awkward crazy walk. I will walk around like the King of friggin Kensington going out and remembering all my friends who helped me through this time. I am going to be a helpful and good guy.”

You have had clonus for some time. This is when your left leg would tremor. It doesn’t happen all the time. Usually when you are sitting. The PT explains what causes the clonus and more importantly, what we can do to help calm it. By pushing your left heel down to the floor and stretch the back of your left calf, the clonus calms and disappears.

You walk with the PT guiding your left leg. The slow dance between you works well with a brace on your left foot. The brace stabilizes your left ankle. If the ankle is prevented from bending then the knee tends to stay straight and not bend. The brace immobilizes your ankle in a similar way to how a downhill ski boot would work. A rhythm takes over as you walk with her between the parallel bar. “Straighten and step and straighten and lean to the right and straighten and step …” The choreography of your ‘walking dance’ looks beautiful to me mostly because it represents potential.

You ask if the brace is something that you will need for running. This moved the discussion to the PT’s crystal ball. I grit my teeth as she tells you what she sees her crystal ball. I’m not sure that you are ready for this information yet. You are still spinning emotionally from the OT session earlier this morning.

“I don’t see someone at this level get to running.” She says. This is hard for you to accept. “We look at other goals. Goals like walking some.” She tries to be honest with you. She doesn’t feel that protecting you from the truth is fair to you. She feels that her role is to respect that you have to deal with the losses in your life. “So you can mourn the loss. You can still look back and remember that you accomplished great things.”
She nailed it when she said, “There is a balance between hope and dealing what you have to deal with.” This will be an art that we have to master.

You describe to her about the impaired mobility class of the marathon. An athlete must qualify of the class. Once admitted into the class the runners have more time to complete the marathon. You would get six hours if you don’t need a leg brace and eight hours if you do need a leg brace. “Oh well, OK if that’s the circumstance then go for it!” she said. “Go for it.” She said.

“I can assist you towards goals that are realistic goals, one handed activities, getting in and out of the wheel chair. Dealing with the wheel chair right now. We don’t know how far the walking is going to come.” “ Do you think I will be waling?” “ I think you will be walking with assistance. I can hope for more.”

The PT moves you to the Kinetron. This is a sort of a stair master that you can sit in. The feet rest on two pedals. As you push down with one leg, you push up with the other. You alternate back and forth with the movement. I don’t understand how you can do this. Since the brace is still on, I imagine that most of the movement is coming from your upper leg muscles. The gluteal muscles Perhaps these are the first muscles to wake up. They allow you to extend your leg. Seeing you do this sparks a flicker of hope again in my mind.

As you go through the motions of the physio session, you talk about your purpose. “I owe it to you to make this work and make our lives good. That’s my job. That’s why I was kept here. I can cry all I want of now but there’s going to be a time when it’s going to stop.” I whole-heartily agree. If you can see a purpose or a vision then everything that your need inside of your will reach for that vision.

After the PT we went to Timmy’s to get a large black coffee to take to your room. On the way back, We talk about choices. Choices that we can make each day. “When you get up in the morning, you have a choice. You can choose to wallow in self-pity and have a bad day or you can choose to have the best day that you can have. It is a conscious choice. A choice that you can make each day. It’s a choice that I make each day. If you choose the ‘good day’ you will be happier.

Good goals and dreams will come true. There are so many things I want to do in my life that weren’t, ultimately, that important. I ran and I was a good runner. I might not be able to run so I’m not a runner. I don’t want another addiction that appeases me or makes me feel like I’m a whole person. There are tons of little tiny things that will all add up to making me a person … maybe that’s what I have to do.” You add “This chapter is six more weeks. The more I can take out of here, the better. Then the next chapter starts and my God I’ll do it ... being part of the family and loved by the family and being able to love my family ... that will be a blast.”

I think that at one point throughout the day you went through every stage of grief. Anger at yourself, Denial of the worst possibilities, Bargaining by wanting to be a good person if you can walk. Depression and a sense of wanting to end your nightmare. And acceptance so that you can be home with your family. The grief isn’t finished. It just started. You have explored all the flavours of grief today. It’s as if you are taste testing each part to see which one you like the most.

I hope you will settle on acceptance of the moment and yet keep the dream of the future.

Thursday, January 28, 2010

Wednesday January 27 – Eight Weeks

Our nightly phone call was completely taken up by the children. They had to tell you about things that happened at school. I had to call you back to get to talk to you after the children were in bed.

This morning your OT came to see how you do your personal care in the mornings. “I did OK but not awesome.” You said. She told you that you might need some special equipment to help you do things. Basic things like getting dressed. She said that you may have to get “used to the idea of being disabled – it may be a reality”. This thought ‘freaked you lot a little.” You broke down once the thought of this reality sunk in.

It almost seems like the rehab team is preparing you for your new very different reality. They are not trying to get back your old reality.

As I spend my spare time looking for other therapies, I wonder if it is time well spent… I still think it’s too early to accept any reality. I have been looking at Constraint Induced (CI) therapy and stem cell therapy. Of the two therapies, the stem cell seems the most promising but it’s s new thing and there are many unproven claims and misrepresented results available to sucker in the desperate stroke victim. We will have to proceed carefully.

You have a discharge date already! March 11 that’s only 8 weeks. I don’t know what to think of that – I have already scolded myself of thinking too much about the date. Eight weeks doesn’t seem like very long. Is that because there are minimal things they can do or because any brain ‘waking up’ that can be done in your case – will be complete in 8 weeks? I really have very little information to go on – so I will not read very much into this now.

Speculation is going to get us no where right now. We just have to stick to the program and have faith.

Today, you enjoyed yourself at trying your hand being a matchmaker. Tonight is games night at rehab. It is set up by the recreational therapists and their assistants. You try to set up two of your recreational therapists. Your new career as matchmaker may not pay much in the form of money but you are hoping to have some children named after you!

Tuesday January 26 – ‘Progress’

At your OT appointment a arm brace is made for your left arm. It is designed to keep your fingers and wrist in a neutral position. Without the brace your fingers tend to curl into a fist. This can cause contracture and render the hand useless later. It also helps protect your hand. Yesterday, you left arm dropped of the arm rest of your chair and got jammed in the wheel of the chair. You knew something wasn’t right and it hurt but you were unsure where the hurt came from.

Your OT says that you should wear the brace all the time except when you are doing PT. “And when I salute.” You add with a slight grin. You ask “Can the children can draw on it.”
“Absolutely” she says.
“It is made of tough material.” You note. “It will be harder to cut my wrists now.” Your OT doesn’t crack a smile. She is a tough audience.

You have noticed the occasional movement in your left hand where it will stretch out a bit. It is random and not of your willing. The OT suggests that this movement is not the best one to encourage. You want to encourage the opposite motion. The motion that closes your palm. “So if I can crush this brace, I’m doing OK?” You said. “If you can crush the brace, you probably don’t need it anymore.” She replied dryly with a smile.

OT is coming at 7:30am tomorrow to see how you can do your personal care. And next Thursday, she will show me the right way to help you transfer. There are wrong ways and right ways and better ways to transfer. The better ways make you do most of the work. That’s what I need to learn.

She asks about the journal that you are keeping. She set the book up so that you would have to pay attention to the left margin. She placed a red line on the left to draw your eye to it. I mentioned how newspaper columns have been easier to read. She thinks you should try to read newspapers. She also mentioned that a red line can be put on your TV to help you draw your gaze to the left.

We talk about your vision. There is no way to really distinguish between left visual field cortical blindness and pure neglect. But there is a difference with outcomes. She didn’t elaborate on this point other then to say that there are strategies to get you to attend to your left. ‘Attend’ is the opposite to ‘neglect’. If you attend to your left then your left limbs may come on online better too.

The PT appointment is right after the OT. The student starts the session by putting a muscle stimulator on your shoulder to see if these muscles can be ‘woken’ up. It is at a low setting to start with. Over time the intensity and the duration will be increased. Possibly this is a machine that we will buy to use at home. The PT student explained that standing is good because weight bearing is good for strengthening and learning balance. Standing will lead to walking … maybe.

You did do a little ‘walking’ today. Actually you stood and, with cues from the PT student, you shifted your weight from one side to the other so that you could walk. You couldn’t move your left foot forward. The PT had the move it herself as you shifted your weight.

You have a long way to go. But at least you are doing it.

Over the last few days at the rehab, I have been meeting with other wives of patients. There are a few of us who have been sitting vigil by their husband’s side since their accidents. So many stories, Sad stories … the stories help me deal with my self-pity and put it into prospective.

We went for coffee at Tim’s. We found the right combination of coffee and coffeemate and sugar for the best taste. 0mg Cholesterol and 6g fat and 4 tsp of sugar for a total of 140 calories. That’s a significant improvement over the 4X4 with 560 calories, 28g fat and 120 mg cholesterol..

As we talk about you recovery and what you have to do to take charge of it, you interrupt me. “I would like to add a new word to our vocabulary.” “New word?” I echoed. “Yes a new word that tells me that I’m doing well… that I’m making any kinds of stides towards being healthy, being a good dad … any thing good. If you said the word ‘progress’. Then I know that you see it in me.”

I like the word. Progress. It a code word of sorts. A word that tells you that you are on the right track and that I’m proud of you. A word that will teach you to be proud of yourself.

It’s going to be a very important word over the next weeks and months. There will be a lot of challenges, frustrations and successes. There will be Progress.

The Chaplain visited you today. You opened up and chattered away about your stroke, about the church and the people you love at the church. You even asked if she was able to make a person a Saint. You wanted to nominate some of the people you have crossed paths with in the last few months. She admired your magic blanket. We told the magic blanket story.

You also talked about your addictions. You asked about talking to someone about dealing with stress and coping without an addiction by your side. She said that she would contact a counselor or social worker to talk with you. I’m proud of you. I whisper ‘Progress’ in your ear.

In the afternoon, we go to the coffee shop with a couple of the recreational therapist students (RT). Conversation topics were all over the place. They could see your funny side. One of the RT’s asked if you were a comedian.

At a serious moment, you told the RT students a story I hadn’t heard before. It was one of those memories that was buried deep and almost forgotten and for some reason, today, you chose to tell it. We were talking about baseball and running coach signals at the time. This must have sparked the memory.

“Back in my baseball days when I was young I was on the third base waiting for the chance to get home. I was watching the catcher closely. He was dogging it and just slowly lobbing the ball back to the pitcher each time. I realized that even though I was an average runner that I could probably make it almost to home plate while the ball was still in the air. I knew that I would already have a few steps lead off and if I took off, as the catcher’s arm was cocked back, I could probably get to within a step or two of home plate. Before the pitcher even got the ball and had time to react, I would steal home!”

Stealing home. Your hero, Rod Carew stole home. He stole home 17 times.

“Did you do it?” the RT’s asked. “No” you said “I should have – it has been a big regret of mine ever since. If I didn’t make it – I would have just been chewed out by the coach but if I made it I would have had a great story to tell for years.”

It was a regretted missed opportunity.

Just before I leave, I put a copy of the first eight weeks of the journal out for you to read. I hope that the effort of looking for the left margin will help you attend to your left. When I started the journal, I had no idea that the therapy from the journal would come from the actual physical act of reading it.

It was another tough good bye.

When I get back to Truro, I head to the rink to pick up the children. I get to watch Quinn and Tara skate about. Quinn takes great delight at falling at every opportunity he could get. He is growing up. Last year, he was extremely frustrated while learning to cross-country ski. There is such a difference in attitude between this year and last year. One year may not have increased his balance but it improved his outlook.

At bedtime there is no answer when we call you. I tell Tara that you are probably in the recreational therapy floor playing the ‘Name that Tune’ game. “What?,” she says. She couldn’t hear me because she is plugged into her ipod listening to her tunes. All the tunes she has on her ipod are the songs that you have on yours. I repeated what I said to Tara. She pulls out an earpiece, smiles and says “Name that tune? Dad will be good at that.”

After the children are in bed, I call you back. You did do well at the name that tune game. You were one of the top three. You said. The only songs you missed were country songs.

You had an idea for us to do in the evenings when you get home. “We can cuddle up on the sofa and work on the book!” You said. I cautioned you that we will have to be patient because we don’t know how the book is going to turn out. We are both learning how to be patient. You will be waiting less in the future – because you will be less dependent on people.

“I know that I have to do the recovery their way. If I don’t do it their way, then I may jeopardize the finish ... I know I can do it. The closer I get to home the easier it will get.”

I tell you that this is ‘Progress’. I can hear you smile over the phone. There will be no regretted missed opportunities here. If you could steal home right now … you would.

Last week I saw problems not possibilities. Today, I see possibilities not problems. I guess that’s ‘progress’ too.

Tuesday, January 26, 2010

Monday January 25 - A Recipe for a Happy Life

It was a crazy morning today. I forgot to pack the children’s gymnastic stuff before school. So Annie and I had to go back to the school with the gear before walking to work, which we were late for. Later in the morning, Tara calls me at work and reminds me there is no gymnastics for her this week. Arugh! Then later in the day, I find out that Quinn decided that he would rather skate with friends then go to gymnastics today. Double Arugh!

They both had fun with their friends. They don’t get much free time to just hang with friends. So I think it all turned out all right.

As I walk Annie home, I was thinking about the words written on the wall of the 4th floor. Pause - Relax – Breathe. Good words and good advice. I wish I could find time to do this.

I picked Tara up first and we went to get groceries. When Tara was about two years old, We started the tradition of letting her pick one thing to put in the grocery cart for the week. It’s interesting how her choices have changed over the years.

I would give her a challenge each week. Initially it was easy challenges. Like “Get the greenest vegetable”. Then I upped the task to packaging. “It can be a dessert for school but it has to come in a container that can be recycled." Today’s challenge was a treat that had less then 8g of fat and less then 10mg cholesterol. I almost got through the entire grocery list before she brought me her prize but she did it! She is a label reader now.

Last week you said that compulsive gamblers are very good at deception. I still have disbelief about the smoking. I don’t know how I missed it. Last weekend you told me about your technique to get rid of the yellow stains that accumulate on your finger tips. “I just soaked them in javax and the stains would never show!” You said. I shook my head when you said this. Between breath fresheners, and hand cream and car deodorizer you had all the angles covered. I didn’t have a chance at finding you out. You outsmarted me.

We call you at bedtime. You had a bad night last night. There was a lot of shoulder pain. The medications didn’t seem to help. The doctors have increased your gabapentin dose again to see if it will help.

This evening you went to a presentation put on be the recreational therapists. The program was called “A Recipe for a Happy Life.” You and other patients worked together to identify the important things in your lives. I suppose that by identifying the important things, you can focus your efforts on them and that might make them more achievable. One of your important things was “To run in Cape Breton”. You said you had others like family and friends and Himmy the cat. “My cat - I miss him.” You said.

Monday nights are always a battle to get through in a timely way. We usually get home late. We still need to eat. Although tonight Quinn ate at Ann’s house where he was playing. Then it’s showers and in bed by 8pm. Bedtime on Monday’s never happens at 8pm. Quinn is disappointed again. There is no time for bedtime stories. I felt badly. Tara is at an age where she prefers to read to herself. When Tara was Quinn’s age, she got 2 –3 stories every night. Each night one of us would read to the children. They preferred you to read because I would usually fall asleep right in the middle of the story.

As I kiss Quinn good night and tuck him in, I tell him to think about the family life we will all have when you get home. “Daddy will have time to read to you every night.” I said. Quinn smiles and closes his eyes and says “Yeah. That will be great.”

Maybe it’s the little things that are the main ingredients to the happy life.

Sunday January 24 - The Best Cribbage Game Ever

The four of us spend the morning talking about how life might look when you get home. The division of jobs within the family will have to change a little. In the past, you were the children’s main chauffeur and I did most of the meal planning and preparing. You did the homework with the children and I did the house keeping. You cleaned the fish tanks and fed the fish and cats. I fed Annie and walked her and cleaned the litter boxes. Except when I was pregnant. We agreed that pregnant people shouldn’t clean litter boxes and then, at your suggestion, we extended the rule to nursing people. That was four great litter box free years for me.

At times the work seemed a little unbalanced but what we each did is what we were best suited to do in the run of the day. As with any couple, a well-choreographed dance begins to emerge between the partners that allows for things to get done. This is usually the result of years of practice to get it right. We were no exception.

You feel that, with your newfound interest in healthy eating and the heart healthy diet, you might try to take on more of the cooking. I think that this would be great. The kitchen is a place I like to clean. I don’t especially like to cook. I like to eat and I really enjoy eating healthy food. Having you become the main ‘cooker’ in the family would be a wonderful thing to my mind.

On the other hand, until you are able to regain your license, I will have to be the main driver. This has never been my strong suit. My van proudly bears some pretty good dents that tell any passing driver to beware of me and my car. I hope you will earn your license back. On your worst day you are a far better driver then on my best day.

We may have to get the car rigged so you can drive it. We may have to give up the standard transmission. We will also have to work on your blind spots. You must practice looking to the left. To compensate for your vision loss, you must do BIG shoulder checks to the left – just to see what a normal-sighted person would see. Even if you do all this, you may not get your license back.

You felt that “dealing with the shock of being home” well be hard. You know that you will be reminded of the things you want to do but you will know that you can’t. “If they can get me working in a month – I’ll be fine – just give me a chance.” You want to walk Annie. Annie would love that. You want to become a “walking fool”. This, you feel, will be training for being a “running fool”. (A phrase from ‘Forrest Gump’.)

At lunch you quiz the children on their satisfaction about visiting you. You are worried that I am dragging them to the hospital to visit you. I’m not. The children want to be by your side. They want to cheer your successes and know about your challenges. They want to see their Dad get better. They want to come to rehab to see you.

Tara says that you are her BFFWAP. You ask what is a BFFWAP. “That’s you Daddy – Best Friend Forever With Amazing Person”. I think she made her point. You are important to them and they want to see you as much as they can.

After lunch, I suggest that we teach Quinn to play crib. Crib has been a passion for you since I first taught you the game. Once I learned about the importance of # 29 in your life, I knew I would have to teach you crib. You snatched the pebble from the master’s hand pretty early in your crib education.

Two years ago, Tara’s Christmas present to you was learning cribbage. My Mum and I would teach Tara on the sly on Sundays while at Mum’s house. When you opened the present, you were skeptical that Tara could play. But she showed you and even beat you at one of your first games.

Quinn was keen to join in on the cribbage fun. You and Quinn were a team and you played against me. It was a close game. The score see-sawed back and forth with each crib. We had some good hands and some duds. Quinn was learning fast. The game was down to the wire. We were tied with three points left to score a win. The you and Quinn scored a pair on the count and got a point for last card! Your team won but I felt like I won because it was the best crib game ever.

Quinn is hooked on the game now. I can see lots of four way crib games in our future.

When it was time to leave, the tears flowed. You couldn’t help yourself. Quinn didn’t want to leave you while you were crying. He puts his little arms around you and holds you while saying comforting words. It was almost as if you were the child and he was your Dad. By the time we actually left we all cried. I think you realized that someone had to hold it together long enough to say good bye. You managed to compose yourself long enough to get the children out of the room.

The good bye’s are tougher with children. On the drive home, I asked about the best part and worst part of the visit. Quinn voted for the crib game. I had to agree. Tara felt watching ‘October Sky’ was good. Quinn agreed with that.

We all agreed that the hardest part of the weekend was leaving you there and driving home.

Sunday, January 24, 2010

Saturday January 23 – The First Week

The first week at the rehab has been a little disappointing for both of us. I feel that we have been patient for so long. We had thought that you would be busy most of the day with therapies. So far you’ve had 4 hours of physiotherapy and 4 hours of occupational therapy for the whole week. It doesn’t seem worth the sacrifice of having you away from home. I know that the treatments will increase and a large part of what was done this week was assessments and tests. I hope that this information will lead to busier life for you later.

The loneliness is very hard on you. You have met a few other ‘inmates’. The bond that brings you together is brain injury. Hardly the foundation for a life long relationship. However, I suppose that wonderful friendships have been built on much less. You just need to try. There is one common theme for the weekend patients. You all feel like inmates. If you can hear a random conversation between two patients, or family members of patients, the first information exchanged is “What are you in for?” and “How long?” It’s easy to see why you feel like an inmate.

Your reaction to the loneliness and boredom is to find an escape. The TV has always been your default when you were bored. Today you are pressing hard for more TV channels. I’m reluctant, TV allows you to emotionally withdraw from others. I’ve seen it happen before to you. Your focus must be to get better, not watching reruns on TV.

On the other hand, I know how escape can be helpful from time to time. Today I felt it. I have been low the last few days. I have had a sudden wave of tiredness. My tiredness is due to that stupid crystal ball. My mind keeps trying to race ahead to see what life will be like. When I do, I get tired. Tired of thinking about all the things that must be done and decisions that must be made in the future.

This type of thinking gets me into trouble and I have to stop it. I have been much better at focusing on the moment but I have lost my focus the last few days.

The children and I slept at Lenore’s apartment. It’s very conveniently located to the hospital. I brought food with us so there was minimal need to go outside. It’s ashame because it looked like a nice day.

You had a variety of visitors with whom you shared your guilty pleasure of smoking secret. You said each time that you felt stronger when you tell people. In some cases, I think that you are worried that your friends are going to think less of you for being a closet smoker. But they aren’t. They are supportive and kind and still love you. I think they walk away with a new level of respect for you after your confession.

You are your hardest critic. You have always said that you were my toughest critic, but I didn’t feel that way … except in the driving category. You have judged yourself as guilty and not a good person for so long that you don’t understand your friends and family’s reaction to your news. That doesn’t mean that you aren’t grateful for their love and support. You are grateful but you have a hard time understanding why.

You even doubt the children’s and my commitment to you. You asked the children today if they really want to spend the weekend in Halifax visiting you. Of course they said YES. Quinn states the obvious to your question why. “Cause you’re my Dad, Dad” You don’t have to be fun for them to love you. They just want you. You have asked me if I would take on another lover. I said NO, besides when would I find the time!

I think when you can see why people love you despite your weaknesses, you will see a way to believe in yourself and love yourself. I pray that this epiphany comes soon. It will help you at this point in your life.

You still have a level of depression that worries me. As we walked over to Tim Horton’s through the tunnel from the NSRC to the VG, you said that if you had to chose, you wold not want to go through this. I know this is just you talking about your feelings of the moment. I don’t think you really feel this way, but it still hard to hear you say this and there is nothing I can do or say that will change your mind. Only you can do this.

We watched a movie called ‘October Sky’ together on your bed tonight. Being in a low mood myself, I appreciated the escape that the movie provided. I seldom crave an escape. I liked my life and escapes weren’t usually needed. But it did feel good tonight to have an escape. I think I understand why the TV is so important to you now. You said it best: “If I can watch something for a few hours, it helps me to stop thinking of me.”

I am worried that TV could interfere with your recovery time at the NSRC. Deep down, I’m worried that TV is going to replace the cigarettes for an addiction. As it was before the stroke, you would plan your day and evening around what was on TV. I could understand the need to do this with sport events. But when you didn’t want to do something because there is a rerun of MASH or something on TV, it scared me.

Friday January 22 – Two Different Marathons

Today a cloud followed me to work. I couldn’t shake off the PT’s words: “wheelchair”, “leg brace”, “walking short distances with assistance.” I am not ready for any reality and acceptance yet. I know that denial has been my downfall before but I really don’t think that I have to accept any of these things yet.

When I got to work, it was obvious that my cloud was dark. Attempts at cheering me up lead to me running to the bathroom to collect myself. I am not having a strong day. I don’t like this feeling. Thank God it was a busy day. My amazing co-workers knew just what to do to help. They kept me busy. It helped. It gave me time for my mind to settle and find a path of understanding.

At lunch, Cecelia asked how you were doing. I couldn’t hold it in any longer. I spilled out the bad thoughts and feelings. She knew about your gambling days. She was there for you then. She gave me what I needed. An ear and a shoulder. I needed to cry. I hadn’t cried for quite some time. I left go of my fears. My fears that if you are stripped of your ability to run, where will you turn. You needed running. Running was your antidote to gambling.

I needed you to be a runner. Even for you to lose hope of the possibility of running again is too much for you now. You are too fragile.

I am worried that the family meeting next week, they may share their crystal ball findings with you. I wonder if that was part of the reason for the PT’s questions. “Are you in pain?” and “How would you rate your current health on a 1 to 5 scale.” Perhaps the information gleamed from this will help them decide how to help you find your reality.

As work was finishing up, Joye reached out and gave me a hug. She instinctively knew I needed one. She said “It’s OK to be sad. You have a lot of things to be sad about.” I didn’t think so. After seeing some of the people at the rehab, I felt I should have no place for self-pity. I have no time for self-pity. After all, you lived. I should be happy with that miracle. She repeated “You still have permission to be sad. Everyone is entitled to a sad day.”

It was at that moment that I realized that Joye had just given me a gift. Permission to be sad. Permission for self-pity. I didn’t realize that I needed that, but I did. I realized that the journal was doing this for me. Every day when I write, by putting my thoughts, fears and feelings into words, I am giving myself permission to have self-pity. I didn’t write last night because I had been up so early and had a headache. I missed my self-pity fix.

As I left work, Julia asked about you. I told her what I was told by the PT. “I am not ready for this information. I don’t know why she told me this.” As the words came out of my mouth, I realized why. The conversation with the PT happened for a reason.

For months now, I had been focused on your trip to rehab. At the time, I pictured it as our finish line. But it’s not. Intellectually, I knew this wasn’t. Recovery from strokes takes years not months.

Rehab is a water stop for me. A place where I can stop for a minute and collect myself and measure what is left inside me and plan for the last part. I need to plan for after rehab. Rehab is going to try to get you as far as you can go in a short amount of time. They have a lot of patients. They have to try to do the most good for the most people.

Rehab will be your starting line but rehab certainly isn’t my finish line.

The NSRC is the place where I must change my direction. I must find out what is available to help you after rehab. New therapies, controversial therapies, cutting edge therapies. Science is a wonderful thing. There are always new things on the horizon. My gaze must shift from the finish line to the horizon. The NSRC is a good place to find the horizon. It is a teaching hospital. It will have the resources that I need to look at to find the horizon.

We are two different marathons. Mine is at a water station at the half marathon point and yours is starting.

You told me about your conversation with Steve. You told him about being a closet smoker. He was understanding and accepting. “He would take a bullet for me without even thinking about it. I can’t put it into words how much respect I have for him.”
“My brother is a better person then I am.” He was great to you. ““I love my brother.”

You wonder aloud why he cares about you. Quinn chips in the obvious innocent thought. “It’s because he is your brother and you had a stroke.” “I don’t think that automatically deserves me to be loved.” You answer. Quinn persists. “You were always brothers.”

To a seven year-old the truth is very clear. Somewhere between seven and fourty-five the truth get cloudy.

Thursday January 21 – The Crystal Ball

It was a Marsha morning. I didn’t sleep well last night, I was excited about your description of walking. Going to Halifax with Marsha meant that I would get to the NSRC early and I would be there for your OT at 9 am and PT at 10 am.

When I got to your room it was 6:45am. Normally you would be up, had your coffee and been to work and back and if it’s a snow day, you would have shoveled the church and us out. Today you are sleeping. Well resting actually, I didn’t have to wake you. You smiled and I kissed you good morning. The roommates were still sleeping and snoring. I snuggle into bed with you and we whisper to each other about life and love.

It may have only lasted of 10 to 15 minutes. As the sun rose and the room lit up, people started to get more conscious and moving. Our quiet moment was broken. But we will remember it forever.

At breakfast we talk about why you smoked. You explained to me that you didn’t feel very good about yourself. You compared yourself to me. You didn’t feel like you measured up. You smoked and concealed it because then you “could be good at being bad”. When you gave up gambling the smoking became worse.

We talked and talked. We debrided the wound left thoroughly and we are starting fresh. Clean slate. A re-do for you and for me and for our family.

This is a new beginning.

We talked about substitutes for the addiction. Juanita had suggested to me that you might reach for food. Weight issues will make your health worse and your mobility more difficult. You point out that the heart healthy food the NSRC has you on is very good. You think that you will be all right with food. Of course there is also the advantage of not seeing the left side of your plate. You consistently eat exactly one half of the food on your plate. The “half plate diet” may be an asset to your weight management.

I asked you if you would see a psychologist about your addictive nature. We need to find ways to deal with this before it finds another way to affect you. You agreed.

The nurse came to get blood and give morning medications and do your vital signs. You tell her about your smoking. She sees a lot of smokers in her in of work. Ex-smoker, diehard smokers and struggling-to-quit smokers. It’s a story that I expect she has heard before.

As we talk with the nurse, it turns out that she is from Haiti, Suddenly, our worries evaporate when we think of the sorrow that she must have and yet here she is looking after people who smoked and stroked.

You have a bone scan scheduled for today. After a team meeting, Dr Askari wants to see if the shoulder- hand pain has something to do with poor bone density. She is also arranging to have your vision reassessed. The porter who took you over to the VG is a smoker. He is not ready to quit. His father smoked all his life and died when he was in his 90’s. He is a diehard smoker whose job is to look after other smokers who stroked.

Your OT popped in and said that your OT must be rescheduled for 2pm. The trip to the VG meant you missed your PT today. I didn’t get to see you do your routine on the parallel bars. Just after you left for the VG with the smoking porter, your PT popped into your room.

She wanted to give me a peek into her crystal ball. It isn’t an official prognosis because it’s only based on three days of PT, but she is an experienced PT and can probably predict outcomes fairly well.

She described how you walked between the parallel bars yesterday. You needed help to move your left leg forward and to shift weight from right leg to the braced left leg. You also stood for minute and 26 seconds with a practice brace strapped on.

“My first impression is that he will get to the point where he can walk with assistance ... He wants more. We didn’t know whether walking would be a possibility at all. I’m sure that it is … my gut says it’s certainly worth a try to see if it develops.” She says. “My crystal ball shows someone in a wheel chair getting into and out of the wheel chair himself safely and walking when there is someone else around.” She also mentioned that you will need a leg brace for walking.

“The first couple of weeks are crucial to understanding how far you can go. The predictions will be better then.” She isn’t going to share this gut feeling with you. She knows you aren’t ready of this yet. They told you that they are looking at walking and that so far they are very pleased.

I felt devastated after my talk with the PT. Her realistic approach to your mobility has dented my armor. I am not ready for realistic acceptance. I have been feeding off hope for so long, I don’t want to suddenly change the fuel to my energy from hope to acceptance of realism.

The words ‘wheelchair’ and ‘leg brace’ certainly don’t mean running. She said that you ‘wanted more’. She couldn’t even say the word ‘running’ then. She is trying to be very realistic. That is her job. That is my question answered.

I don’t like the answer. I don’t want to give up and accept but I don’t want to live in denial either.

Yesterday, Tara and I went shopping after school to find a new backpack. After a lot of negotiation, we finally agreed on a good backpack. I found the experience stressful. I don’t like to shop. As we walked away from the store Tara slipped her hand into mine and said “I love shopping with you.” I forced a smile. I cringe at the thought of a mother and daughter have a bond over shopping.

Then Tara said something that did make me smile for a moment. “Maybe when Daddy is better, we can go for some long hikes.” I loved this thought until the PT’s words drifted by my mind again. Wheelchair and leg brace. Hiking sounded as far away as running.

This is not my life plan. You had hopes and dreams and so did I. Mine included you. I wanted to travel and work in other countries. I wanted to give our children a global experience. I couldn’t do this on my own. I need you.

I’m not ready for this news and I’m not going to accept it. I will only accept reality when all the stones have been turned over and explored. That is when I will accept acceptance. But for now Denial and Hope is where I choose to live. I want you to live there with me. I have to remember my own advice to you when you are feeling overwhelmed. This is just a wave. A wave of grief … we will find our way past it.

To clear my head, while you were at the VG getting the bone scan injection, I went for a walk. I picked up some more Coffeemate at the grocery store. As I walk back from the grocery store, I passed the Summer street entrance of the Halifax Infirmary QE2. There, lining the sidewalk, are smokers. As I glance up at the windows, that I used to look out of for days on end, I wanted to vomit. I wanted to scream at them. “Are you crazy. Look at my pain. This is the pain you are putting your spouses, your children, your parents and anyone who loves you through. I want you to see my pain and feel my hurt – then you’d might think twice about your next drag on a cigarette." I didn't. I know it is a waste of my energy and resources. Just thinking about it was somewhat therapeutic to me. But it wasn’t enough.

Back at the NSRC, we went to a game session. It was a word game called the ‘Brain game’. There weren’t many interested. But you and a few others participated. Half the questions stumped me. Sitting as a spectator, I was impressed. One wouldn’t realize that the players all had brain damage.

You missed your OT appointment because you had to go back to the VG for the second part of your bone scan. No PT and no OT today. It’s been a bit disappointing.

“I am 45 and a cripple.” It’s too early to settle for this. We have to look forward. I was feeling smothered by the wheelchair and leg brace words. You asked if I “would be content with you as a cripple.” I scold you. “You are half of my whole - it doesn’t matter that you are crippled. It doesn’t make you less of a person to me or to the children.” I cry. You cry. We have to be strong for each other.

Later in the day, the PT and her student come back to se you. They say they need to ask you a few questions. They seem like silly questions. “What is type of building is this?” “What month is?” You answer these easily. “Do you usually have pain?” “No.” You said. “Is your general health - excellent, very good, good, fair, poor.” Your narrowed it down to ‘good’ or ‘fair’. She pressed harder to get you to commit to one answer. You choose ‘fair’ because of the cholesterol problem. You would have said ‘excellent’ before the stroke.

I wondered what the purpose to the exercise was. Was she trying to gauge how to approach you with the crystal ball news? I was stumped.

Marsha came to pick me up just as the PT was with you. We took Marsha to Timmy’s for a coffee. I persuaded you to get a 2X2 and add the whitener to it. I stayed in the line up while the two of you got a table. Just as I was getting to the front of the line. A woman who I’d seen earlier was walking cautiously with a white cane. She was clearly blind and disoriented. I gave up my spot in line to help her get back to where she wanted to go. Her demeanor was very positive. She laughed off the fact that she wasn’t sure where she was. She said that she really needed a coffee to beat back the boredom of her room upstairs. She was sweet, trusting and upbeat. A little of it rubbed off on me.

My self-pity train was being ridden hard today. The blind lady made the trip a little shorter.

On the ride back to Truro, Marsha talked me down to the ground. “You’ve been through this sort of thing before. Things will change.” She is right of course. Things do change – they change all the time. I just have to get through this wave of sadness.

Tonight I called Steve. I had to share my worries with someone who could help prop you up without worrying your parents. He was going to give you a call. As I hang up the phone, I noticed a picture flash by on the computer screen. It was a picture of you and Quinn. I took it last summer when we were in Newfoundland.

You and Quinn are racing across a field towards the camera. Quinn’s arms are in the air and your legs were caught in mid stride. Your left muscular leg was pushing out in front. You were looking at each other with joy on your faces. You were both feeling the joy of running in that moment.

My heart is breaking. I want you to feel whole again. I want you to feel that joy again.

This day has given me a headache. Probably stress, I didn’t get much sleep last night due to excitement of you possibly walking so early in your rehab. Then I get the crystal ball reading and now I am drained.

Since the gambling chapter in our lives, I have worried about my tendency to deny the obvious. I don’t want to go down the path of being in denial and not accepting the obvious like I did then. You have just started your marathon. To accept that you won’t finish it at the start line is not the mentality of a marathon runner. It’s too early to accept. If it’s too early to ‘accept’ and we are not in ‘denial’ then we must be still in ‘hope’. I choose to stay in hope until all your possible finish lines are crossed.

Wednesday January 20 – The Shuffle

On our nightly call, I got to hear all about your day.

The occupational therapist got you a proper wheelchair today. Last Friday they set you up with one that had a defective left footrest. Then they found you one that was far too big and when you got tired, you would sort of slumped in the chair, putting pressure on your bad left shoulder. It had small wheels so you could not self propel properly. You had that chair until this morning. You like your new chair. You can maneuver it about with some ease although distances can be tiring.

Your physio session was good you said. You walked! I was stunned. I could imagine how you did this. You told me of how you stood between the parallel bars. You held on with one hand. I think you had a support on you for safety and a brace on your left leg. You shifted your weight to your left foot and take a step and then somehow shuffle your left foot forward so that you could take another step. You repeat this action until you got to the end of the parallel bars. You are a little confused as to how this happened. But you are happy it did. I wondered if the PT ‘helped’ you shuffle the left leg a bit.

“I really like the PT. She builds confidence.” After the parallel bar routine, you did some standing with the PT student. It was good. You stood for a little over a minute but you tired out quickly.

You have a ‘through the grape vine’ visitor today. He is going to rehab a few times a week. He stopped in to visit you. His daughter, Jennifer, you know well and love from the church. You liked your visit with Brewer. You confessed your sins to him. “He is very nice and positive. I hope to see him again.”

You played a card game with the recreational therapist. The game is called ‘Sequence’. It combines cards and chips into a game. You won… twice.

The afternoon passes slowly. TV sucks, not enough channels. You have been spoiled by all the channels that you have at home. Do you remember those days when we only got 2 ½ channels on a good day. The reception was so poor, we didn’t really know what the main characters looked like on our favorite TV show then, the X-files.

In the afternoon, you got over to the Timmy’s for coffee with some other patients. You drank your coffee with the coffeemate. “I could get used to it.” You said.

The long afternoon hours will be hard. Hopefully soon there will be other appointments for other therapies. “I can’t even read well.” You said. That’s not true. You seem to read newspaper articles all right. I think it’s to do with the small column width. You don’t have to track your eyes so far to the left to catch the left-hand margin. I printed up the first 150 pages of you journal for you to read. Tomorrow we’ll see if you can read it OK. If not I can re-format it and make it into columns.

You said that you have been confessing to everyone and anyone who will listen. You confess to both the smoking and gambling. I think you are proving that confession is good for the soul. “The truth I told in the past was tainted with my giant lies. I lived a double life.” You said “I lived a lie. I was good at lying. Compulsive gamblers are very good liars.”

“Will I ever get to play the Dad role for real again? Or just be your big kid?” The day you chose to live was the new beginning of your father role. Now that you are rebuilding yourself, you are going to be a more amazing father. I think the children have already seen glimpses of their new and improved Dad. Just as I am seeing a new image of you as a husband.

I asked you if I could write about your gambling too? (I had written some a few days ago but I didn’t want to post it until you felt that it was OK.) It helps explain a lot about your need to run. You traded one addiction for another. I thought that it was your only addiction. Now you are trading your smoking addiction for another addiction … Addiction to Life. Addiction to a new life.

You said “YES, I have nothing to hide. Maybe my pain and experience might help someone else. I want to help others.”

I told you that I feel like we are in the home stretch of the marathon. You don’t agree. “If this was the Johnny Miles Marathon, then I would be just finishing the first 2.5 kilometer loop. I have a long way to go.” You added “I know this is where I have to be, so I can get home.”

Tuesday January 19 – The Truth Sets You Free

Your confession last week was about smoking. But it reminded me of other confessions that impacted our family. Many years ago, the confessions started. I should have seen it coming … but I didn’t. Every confession was preceded by a period of denial for me. My denial has not worked well for us in the past.

When we went to Ireland, many years ago, It was raining as it often does in Ireland. To get out of the rain, we ducked into an arcade. “Let’s go in here!” you said. It’s drier then out there so I thought - Why not? As we walked about the arcade, we noticed several VLT’s. They were popular. People were lined up to play them. You suggested that we try it. I’m all for new experiences and we were on vacation (our first vacation in years) and having an adventure, why not try it? You put some money in the machine and it was gone. You tried a bit more money, you might have won something but then it was gone too. I had lost interested. It seemed like a stupid past time to me. An expensive past time.

I remember one day while waiting for my lunch to be served, a young man came into the little restaurant and fed the VLT $20. It took less then 5 minutes. He left the building in a sour mood. Not only was it an expensive past time but it doesn’t even make you feel good. I never did see the draw of the VLT. The idea of gambling never really caught on with me.

A few months later, you made your first confession. You had lost $200. You were devastated. You thought you were too clever to lose money. “The machines are made to make money, not lose money. Over time, there is no way you will come out ahead.” I explained stating the obvious. Of course, you knew that. We talk about it and I thought that we had just learned an expensive lesson. I thought logic would make a difference. It didn’t.

I thought you had learned a lesson. I was annoyed with the NS Government for making VLT’s legal. It’s an unfair form of taxation, preying on the people who can least afford to spare the money. I even wrote a few letters to the editor to vent my disgust. You proof read them for me. I pointed out that the tactics of the VLT are the same for training animals. A conditioned response with random rewards. An animal doesn’t need much of a brain to learn this behaviour. Even chickens with their little birdbrain can learn this trick. My point wasn’t that stupid people gamble, it was that anyone can get trapped in this behaviour. I thought that knowledge would make a difference. It didn’t.

A few months later, you confessed to feeding the machines again. More money, more tears. I suggested that you call the 1-800 number on the machine to find some help. It appeared to me that the counselor’s main qualifications to counsel was the fact that he had over come several addictions himself. We saw him together and then you saw him a few more times by yourself. I thought the counseling and the trauma of having to confess to me would make a difference. It didn’t. I was in denial. And worse, my denial was in a strange way enabling your addiction.

There were several more confessions. There were GA meetings. There was a lot more losses. Some of the losses went on your credit card. The problem was getting scary and complicated. We even went to a marriage counselor. I thought that maybe you were unhappy with our marriage. I thought that if you happier in the marriage it would make a difference. It didn’t.

The second to last confession was shortly after Tara was born. I thought that the role of fatherhood would strike a new passion in you that would push out the old one. It didn’t.

I realize now that I had an addiction to denial.

The last confession was the hardest thing you had ever done. You confessed to your parents. You had to confess to them because you had drawn them into your addiction. They didn’t know they were enabling. They thought that they were helping. At the time I didn’t knew that you were being enabled until that money was gone plus more.

The last confession broke you. You had to find something different to be passionate about. Something big, something measurable.

You had always run off and on to keep in shape. Running seemed like a good start. You turned to running. You ran and ran. When it was obvious that you had a streak of running going, you started to mark it on the calendar. I worried that there will be a day that you couldn’t run. I was concerned that the streak would be broken and you would be broken again. I pleaded with you to find something else. But deep down you knew that you were a runner. So you ran. I was proud of you.

Each day you would carefully write the time that you ran on the calendar in black pen. It had to be a black pen – for some reason. I don’t know why. Each month you would carefully bring the total to date forward to the next month and write it in the margin. The streak grew. You would record your two streaks side by side on the calendar. Your running streak and your ‘No G’ streak (as you called it). I have been proud of your streaks ever since. The streaks are a testiment to your character and conviction.

You had been running ever since … until now.

Quinn’s show and tell went well at school. The teacher got the children to ask questions to learn more about it. They couldn’t guess what it was. Quinn feels he won because no one guessed what your PEG tube was for. Now Tara wants to show her class your PEG tube trophy now.

Today you have a support on your arm when I get to the hospital. It straps about your left forearm and belts the arm to your waist. It will prevent the arm from being twisted into a painful position. You are to wear it during transfer from chair to bed and bed to chair. Also you should wear it while you sleep and walk. You say “walk” like it is going to be a fact not a possibility. I like that attitude.

I missed your OT appointment and the talk you had with the dietician. The dietician wants you on a healthy heart diet. This means some sacrifices in the food department. No more 4X4 coffees, less salt and saturated fats with cholesterol. I brought with me a bottle of coffee whitener that I bought last week on grocery day. It’s a coffeemate product called Caramilk Vanilla coffee whitener.

I try to persuade you to go to Tim Horton’s and get a black coffee. Instead of a 4X4 I want to get a black coffee so we could add the coffeemate. You wanted a 4X4. We compromise on a 4X4 and a large coffee with one cream. I added the whitener to this and we did a taste test. You can tell the difference but you agree that the coffeemate isn’t bad. There is no cholesterol in coffeemate. You suggest that this become a staple grocery item.

I’m pleased that will knock a lot of cholesterol off your diet.

“I’m 45 years old and I can’t do anything.” You said bemoaning the fact that all the things that gave you pleasure are gone. Caffeine, cream, smoking, gambling and running. I point out the obvious things that you can do. Be a husband and be a father.
Our children want a father. We want you back home. I don’t believe that it’s too much to ask. You feel that you own us that. I want you to make the best recovery that you can.

You are concerned that you are not a high-energy person. That is how you see me. You think that you have to compete with me and my drive and energy. But that is not what I need you to do. We are a good fit because we complement each other. I am a high-energy person - I always doing something. I don’t know how to relax, you do. You are a low-key guy.

I need your approach to life and you need a little of mine.

The children will see your recovery and you will be a mentor to them. You will show them that things can happen if you believe in yourself. You can do something. You can get better and be the best that you can be. The children need to see you mentor them through this period in their lives. They will grow up to be strong people if you help them through this journey.

They need you as their father and you as a mentor.

Your physiotherapy (PT) appointment consisted of the PT student doing most of your session. She did some sensory tests to your left leg. A tissue twisted into a point was used to touch your lower leg at various sites to see if you could identify the spot. No luck on this. Then she used a paper clip that was half untwisted to do the same. With your eyes closed you tried to guess where she put the point and whether it was a sharp or dull point. You did feel something with this test but you couldn’t locate it to the right area.

Then there was the emergency bathroom trip. This proved to take almost 20 minutes out of the 60 minute appointment. When you got back, there were only 10 minutes left in the hour. The student used this time to check your proprioception. Your innate sense of knowing where your body parts are in space. She started with your toes. She pushed up and down on the toe and you were to say whether she was pushing up or down. You got it wrong. When she did this with you ankle you got it right.

I would imagine that this information is important to know so that the ability to walk can be determined. If you no sense of where your foot is, it would be hard to walk and walk safely. Falling is a serious problem hemiparetic patients. Often the non-load bearing limbs have weaker bones. Falls can lead to nasty fractures. Ironically, the deep pain caused by a fracture is felt quite well.

I could tell that you enjoyed your time with the PT team. They are going to be important to your recovery. It certainly helps if you have a good relationship with the them.

After lunch you called your parents. It was a long phone call. It covered all sorts of feelings. You did most of the talking. You confessed the smoking to them. They were great. Understanding and supportive. Being both ex-smokers, they know how hard it is to quit smoking. You felt so much better after the phone call.

Dr. Askari, the resident, came in as you finished the call with your parents. She wanted some background information about your health. I told her what I could but I had to preface the conversation with “I thought I knew Chris but the smoking thing was a surprise.”

She is married herself. I could almost picture her trying to imagine how I would not have suspected the smoking. To help her understand, I explained about my allergy to dog fur and the chronic nasal congestion that has left me with minimal sense of smell. I couldn’t smell it. Only once did I find circumstantial evidence of smoking – a package of cigarettes. I never caught you in the act.

She asked routine questions like the what to do in case of a sudden life threatening decline in health. An Advanced Directive. We already have our living wills done. When I read the section in the living will to you, you agreed that it was good. “If there is some hope then resuscitate. And when you are done, resuscitate me again. In fact just resuscitate the hell out of me.” You said to drive home the point.

She asked me if I had any questions. I cut right to the big one. I want to see what’s in your crystal ball. “How long will he be here?” and “What does life look like when the intensive rehab is done?” I didn’t expect an answer on the spot and she knew better then to deliver one. She said that after some assessments and a team meeting, a plan will be made and goals set. The crystal ball picture will be given to us at a family meeting possibly next week.

One of your roommates had a doctor’s appointment today. The poor man is from Cape Breton and doesn’t get to go home on weekends. Today his doctor has given his blessing to go home next week. He is pleased. He has improved a lot in six weeks. Leg and arm strength has improved – he can walk. His speech is slow but confident. He is happy to be getting back to his life at home.

We went down to the fourth floor to check it out. You wanted to look on the internet. I let you do the typing. “Cabot Trail Relay” You are happy to see your beloved relay team listed as team 29. I hope the crystal ball sees you leave the rehab before the last weekend in May. You really want to be on the Cabot Trail that weekend.

You want to see the blog. We look it up and I bookmark it for you so that you can look it up easily on your own. You read aloud the latest entry. There was a comment after the posting by an anonymous person. The comment talked about the inspiration that you have been. The mystery person had given up smoking. Little did she know that you secretly smoked. You were very touched by the thoughts and, more importantly, the actions for the author because the author had started to run.

Your story inspires. I tell you that your story is something that many people can identify with. None of us are perfect. We all have strengths to admire and weaknesses to learn by. Your strengths and weakness tell a story that most people can relate to. “Your story does inspire. You are the story.” You don’t see it that way. “You are the writer.” You reply. I concede that without me your story might not get out but without you there is no story. You ARE the story you are the inspiration and we are a team.

Over the past few years, I have felt a distance grow between us. This disturbed me, but I didn’t know what to do about it. I would try to plan family things so that we could spend time together. This worked some but I noticed that you would get irritable after hanging out with us for the day. I had hoped that the time together would bring us together.

I had no idea that the distance was because of your smoking and your worry that your secret double life of a smoker would be found out. The day of your stroke, I realized quickly that I had to focus on something or I would go crazy. Chris and Terry wisely pointed me to the children. As it turned out, I needed them almost more then they needed me. It saved me.

I couldn’t think about the distance that I had been feeling. It would serve no purpose at the time to think of that. I did wonder at one point early on if there would be a place for me in your life when you recovered. I even wrote these worries on a piece of paper and tucked in a book for safekeeping. I knew that I would have to be patient to get the answer. Patience has paid off.

This is the rock bottom of your smoking – you are now accountable for your recovery and everyone who you shared your secret with will hold you accountable. You are now accountable to me, the children, your parents and the family and friends who you have told. You are even accountable to the anonymous person who posted the comment. By exposing yourself, you have discarded your label as a smoker. You are now a reformed smoker and an inspiration.

If you can believe that the challenges are put in front of you are to test your personal growth, then those conquered challenges can become trophies of your success. You are not a quitter by nature but you will be proud to join the quitter’s club. Over the last week, you have come across a lot of ex-smoker. Both patients and staff. It’s amazing how many have opened up to you – most have quit, some haven’t, some aren’t ready. That is their personal challenge. That’s their trophy to win.

Saying good bye is the hardest part of the visit. The day still seems to slip by far too fast. The weeks ahead are going to be tough on both of us.

At the start of this journey we were told that there was a “possibility of a reasonable recovery”. At the time I didn’t know what that meant. Minutes before that phone call from the neurosurgeon I was trying to come to terms with the idea that you were dying. I could not imagine where on the spectrum possible reasonable recovery lay. All I knew was that it meant you weren’t dead and it also meant you wouldn’t be normal.

Now, with five months of experience under my belt I know that whatever your recovery will be – it will be reasonable. It will be reasonable because we will define reasonable. We will make it work for us … even if it involves a wheelchair. But I don’t think it will include a chair. I think you will walk again and possibly you will run again.

The irony of your deception catches up with me on the drive home. You clung to the deception of being a nonsmoker so that you didn’t have to admit that you were a smoker which meant your circle of family and friends could give you no help from to kick the habit.

By denying the people you love the knowledge, you didn’t get their support.

Tonight’s phone call, you finally concede that it will be weeks before you will be able to come home. You sound up for the challenge. I think unburdening yourself has freed your spirit to move ahead.

Friday, January 22, 2010

Monday January 18 – An Extra-large 0X4 Please

Valerie babysat last week and this week Marianne is on call for me tonight. Last week Valerie and I had a good talk about the some of the newer rehab therapies. A few years ago, her father had a severe stroke. He and Valerie’s mother have learned to live with his disabilities but it is hard on the whole family.

Other books, like Dr. Feltmate’s class mate, Dr Shawn Jennings’ description of his stroke and recovery, have been very helpful for me to get inside the mind of the stroke patient. Now my reading is directed at post stroke therapies. I want to be educated for the next stage of your marathon.

Today started off on the wrong foot at home. This morning there was no hot water and the pellet stove wouldn’t work so there was no heat either. A fire alarm was going off periodically all night for no reason and this morning Quinn was feeling queasy in his tummy. These problems were all identified by 7:30 am. By 7:30 pm I had almost all of them solved.

I felt I had a pretty good day considering the start.

I called you from work. I couldn’t wait to find out how the day went. You told me that you got the physiotherapist to use a TENS - like (transcutaneous electrical nerve stimulation) machine on your left arm. It made your muscle contract and pop up. You were pleased to see this. I don’t think that this machine has much to do with you therapy, I suspect she used it to show you that the wiring in your arm is still there. It was sort of a morale booster.

You found out that your cholesterol is too high. You are a little taken back by this news. This may mean the end to your guilty pleasure of Tim Horton 4X4’s. Far too much cream in that drink. There is 120 mg of cholesterol in one coffee. You probably should be consuming less then 200 mg a day. Two coffees exceeds the maximum daily intake in a day.

Tomorrow you will meet with the dietician and have your meals adjusted while at the rehab and you will start to learn how to control your intake of cholesterol for the rest of your life.

Tara and Quinn said good night to you on the phone tonight. Quinn is excited. Tomorrow is his ‘show and tell’ turn at school. When I asked him what he was going to take to show, there was a long pause. “I want to take two things. I want to take Daddy’s PEG tube but I also want to take the juggling balls that I got for Christmas. Maybe I’ll take both.” When he was tucked into bed he called down stairs “Mummy, can you put Daddy’s PEG tube in my backpack.” I am trying to imagine his teacher’s expression when she sees the tube.

You sounded tired tonight while on the phone. You expressed a little annoyance that you were expected to do as much as you can by yourself by the rehab staff. You have been a little institutionalized by the excellent care that you have received over that past 5 months. It spoiled you. You are frustrated with the demands put upon you now. I’m a little worried this is only the second real day of rehab. (Weekends don’t count.)

Just as I have challenges thrown at me at home with running the house and nurturing the children, you have your challenges at rehab. There will be good days and days that we’d sooner forget. But we will get through them one day and one challenge at a time.

Just put one foot in front of the other. The marathon continues.

Sunday January 17 - A difficult struggle but a blessing

This morning we met a retired RN who had a stroke in November. She gets to go home this week. She will have been here about a month. She can walk with a walker and probably go home with a cane. “They told me that you need 50% attitude and 50% hard work. I have 60% attitude, that made the work hard easier.” She said. Her advice about the exercises was “Do them 10 times, one hundred times doesn’t help you any more and just tires you out. Just listen to the staff, they know what they are doing.”

“You have to have a realistic goal.” She said her goal was “To go home and be able to look after myself.” With her progress to date and her attitude, I believe she’ll do it. Your goals are a little loftier, you want to run a marathon. I believe that you will be able to run again.

Keeping a positive attitude is not easy. Depression in waves is normal. She pointed out that the waves of depression applies to all four of us. Gosh, I just realized that she is right. I have experienced waves of fear and doubt. I need to follow my own advice. Let the waves ride over you because like the waves at the beach, they will always recede.

We did a self-conducted toured the seventh and fourth floors. The seventh floor is for inpatients. I think most of you have had strokes or a traumatic brain injury (TBI). There is a dining room at one end of the floor and a lounge at the other end. The morning sun was pouring in the lounge. It felt good. This is where we met the lady with 60% attitude.

The fourth floor is for recreational therapy. I was introduced to this field of healing at the QE2 when you were there. At the time I couldn’t understand how recreational therapy could be of any help to you. I think I get it now. It bridges the gap between occupational therapy and real life.

Much like a good teacher, who finds a passion within a student and uses it to bring concepts to them, the recreational therapist enables you to practice some of the skills that you relearned. By doing things that you’ll enjoy it will also improve your cognitive, emotional, and social skills.

On the walls are written in large letters motivational thoughts: ‘Dream it – Do it’, ‘Keep it Simple’, and ‘Never Give Up’. There is a piano in the room too. The children played a few songs on it. Tara played a one hand version of the ‘Feather Theme” for you. Above the piano is inscribed on the wall: ‘Pause – Relax - Breathe’.

The children undertake a quick game of pool with us. It was a rather simplified game. With you only able to use you right hand and the children using an adult stick with their short arms, the playing field was fairly level. It turns out I was the best player of the game. That is a family ‘first’. With games that require any physical skill, like hitting a ball with a stick, I have always … to put it bluntly … sucked. I don’t expect to hold the crown for long.

You and Quinn played a game of table shuffleboard. I can see that you both have a long way to go before you’d make the Olympic team. There is TV room with a small library of videos, along with many games and puzzles. Once you make a few friends here, I can see you hanging out down here.

After eating lunch in the dining room of the ‘New Leaf Café down stairs on the first floor. The café is closed on the weekends but there is access to a sink and a microwave as well as tables and chairs. All the equipment and supplies that we need for an easy picnic lunch.

You had a lot of waves of sadness yesterday, You haven’t any today… until you point this fact out. I ask if your sadness is related to feeling insecure in a new place. You didn’t think so.

You are a people person. Once you make some connections with the staff and fellow patients, you will feel more at ease at the NSRC. Being transferred to the NSRC on a Friday didn’t give you much time to make and bond with the staff. This weekend, you have made some connections with patients. A gentleman in the adjacent room knows Donald. They have been friends for many years. You had not met him before but Donald had spoke of him to you and he knew of you through Donald.

This week, I think you will make some relationships with the staff and you will feel more at ease with your new temporary home.

Wayne, Juanita, Maddie and Farley came to visit in the afternoon. The Dallas game was on TV but you tore yourself away to talk with Juanita and Wayne. You revealed your secret to them. Juanita’s reaction was of shock. The expression on her face reminded me of the day she opened the fortune cookie that said she was going to be an aunt.

There were lots of questions about the deception that you pulled off for so long. Juanita’s parting words were that she’d have to think about your confession and decide if it was punishable. She has always been a bit more of a disciplinarian than me. She is an ex-smoker herself. She understands the psyche of a smoker and the things you need to do to break the habit and desire. For me I just want you to get better and never do this again.

You lived with this deception for a long time. Keeping this inside you slowly changed you. The changes were subtle, but in hindsight, I noticed them. I think the changes were because you didn’t like yourself very much because of the deception. This dislike made you withdraw from those who loved you. You didn’t think you deserved our love.

I didn’t see this until now. I thought that your passion for running was your ‘mistress’ not smoking. I had hoped that the running was your therapy and replacement for the gambling. I pointed out to you tonight that this stroke might have saved you from a bigger smoking related disease.

By baring your soul to us all, you are able to like and love yourself. Once you can love yourself, you can truly love someone else. You can be the person you want to be. No matter what the final outcome of this stroke is, I think that we can both agree that it has already been a blessing. A difficult struggle but a blessing.

At bedtime Quinn and Tara get a little philosophical about the smoking. “I’ve never thought of Daddy in the same picture as smoking.” Said Tara as she struggled with the thought. “Why would he want to smoke, it’s strange to put fire in your mouth.” Quinn said. I emphasized to them that the choice to smoke was a bad choice but you are not a bad person. I told them that you will need us more then ever to help you through this recovery. I told them that I was proud of you to share this news because it meant that you were really serious about changing and getting better.

At dinner, I tell the children that I have set my watch alarm to go off at 7:30 every night. When they hear it, it means it’s time to make a bedtime call to you to see how your days went. I hope that phone contact will keep your morale high.

Your reshaping, as you call it, is starting. Tomorrow is a “new start”. You said. “I hope it goes OK.” I remind you not to have wild expectations too soon. Your recovery has been slow so far. It’s Day 140 or five months. Everyone we’ve met so far who had a stroke is no ways near five months post stroke mark. Most patients have got here two to three months after their stroke. Your recovery will take time.

You want me to finish this entry by saying that you love me constantly like “You’re a big love pool and I am trending water.”

Saturday January 16 – The ‘Huggle’

I woke today with a bad dream. I haven’t had any bad dreams for a long time. In fact not since that first night when we were told there was no hope. Most of my dreams I don’t remember but I am just left with an overall sense of peace. This morning, I didn’t feel at peace or rested. I felt angry. Angry at myself and a little angry at you. I want to think that I have forgiven you for the smoking deception. I don’t know that I have yet.

I try to shake off the bad feelings. The little dog that I baby sat last night needed to go back to the animal hospital for further care. Everything this morning seemed to take a long time to do so we got away to Halifax later then I had planned. Fortunately, driving to the hospital is very simple now. The little Fit has an automatic pilot thing. The car just takes us there like a seasoned trail pony. I even got to use cruise control again.

The car ride was extremely quiet car because of the children’s electronic gadgets. Initially I welcomed it. The quiet allowed me to think out the hidden meaning in my dream. I want to tell you what I dreamt about and what I thought it meant. I think it could help you too. By the time we got to the airport, the silence was eerie. Not hearing the usual Tara and Quinn banter un-nerved me.

Peace and quiet is a good thing but not at the expense of having their minds eaten up by machines. For the rest of the ride they sing songs and they criticize me when I try to join in. Oddly, I like this past-time much better then peace and quiet.

You have had several waves of sadness, last night and this morning. You burst into tears at the sight of us. Our nurse told Tara that this was common after a stroke. I think change is difficult. The staff you have met are new to you and you feel out of place.

We talk about your pain and how you can manage it. Most of the time when the pain is more intense, it is because the limb is in a bad position. You can’t manipulate your arm or leg into a more comfortable position. You can’t even identify that your arm or leg is in an odd position. You just get to feel the result. This makes this type of pain difficult to manage but at least the pain doesn’t seem to be a random event that is contrived in your brain. Rather there seems to be an actual cause and effect.

“I’m hopeless, if this happens again or I have a heart attack, I don’t want to live. This is not my life plan. I don’t want to be a burden.” I give you a pep-talk. You have to have faith in the staff and that they know what they are doing. Then you realize what is really bothering you. “It is the loneliness that is the hardest.”

Your room has four beds in it. Two of your roommates have gone home for the weekend. The other roommate is from Cape Breton. He has been here for six weeks. He is able to walk now but couldn’t before. Occasionally he needs to brace himself. His hand is still weak. He doesn’t get to go home on weekends. It’s too far to travel. He says he finds the weekends are very long. I can see why. There is very little that goes on during the weekend. The fourth floor is an area to socialize, but there are only a handful of patients who frequent it on the weekend.

I can see that weekends will be hard for you too, until you are able to come home on a pass. I’m glad that you are here now and have the chance to settle into the routine before I go back to work fulltime next month. I’m worried about the last weekend in January when I’m on call again. I hope to arrange for other visitors for you then.
We check out the fourth floor and found a tunnel that goes from the basement, under University Ave, to the cafeteria in the VG. That’s where we have lunch. The recreational therapist (RT) showed us how to get there. Unfortunately, the doors only open one way on weekends so once you are on the VG side of the tunnel, you can’t get back to the NSRC side unless you have a special pass-key that only employees have. Thankfully, we had the RT with us today to show us the ropes.

You told the children of your addiction to cigarettes. They are both in disbelief. They ask lots of questions to help sort out how you pulled off the deception. You explained to them how bad it was to smoke. There is no safe number of cigarettes. You feel that smoking probably played a role in your stroke. It may not have been a big role but it could have been within your control.

By revealing this side of you to the children, it showed me that you are very serious about beating this addiction too. The children and I pledge to help you in every way that we can.

Quinn was the one who nailed it. He said today “Maybe Daddy is like me, he’s sad sometimes but he doesn’t know why he is sad, he is just sad. Maybe he needs to pull an ear lobe.” Immediately after this inspired insight, he climbed on your bed and hugged you. Touched by the scene, I put my arms around the two of you with Tara quick to follow. There we all were on your bed in a group huddle, or maybe we should call it a group ‘huggle’ with arms entwined and heads together, feeling the warmth and love.

As we part for the night you tell me that this is the hardest thing that you have ever done. You feel a little anti-climatic for the NSRC. You’ve been waiting for thirty-eight days and now you have to wait more. You have to wait the weekend. I tell you to have faith in the staff and most importantly, you must have faith in yourself. Once you see a little more connection form with your left side, your morale will soar. That might not happen for a while so in the meantime, you have to keep the faith.

You still don’t feel better. Now that you have told the children I can find forgiveness for you. As you tell other significant people in your life, my forgiveness will be complete. You have to forgive yourself to believe in yourself. We believe in you. This is your second chance to do it right. That is a gift from above. Don’t blow it.

Wednesday January 13 – Confessions

Note to Readers:

I wrote this last week but I didn’t want to post it until now. Until Chris has told the main people in his life this news himself. I am proud to say that he has done this and now it is out there for the world to see. I think that by sharing this news, it might help others and it will make him more accountable for the future. For his future.

Today you confessed. You confessed to an activity that you have been involved with for a long time. I have suspected it for a few years. When I tried to get you to talk about it, you would deny it or avoid the topic. Now, all these years later, you confess. I wonder why. Why now.

I crossed paths with some strong evidence during the first week of your marathon. I was cleaning out your car so your parents and Steve could use it to drive to Halifax to see you. In the back was your old backpack, it was half-unzipped. I hadn’t seen it for a long time. I had a handful of garbage in one hand and I was looking for somewhere to put it, when I spotted the backpack, I thought that I could use it. I looked inside to see if there was anything of value in it and my eyes caught the corner of a cigarette package tucked in the bottom. There were actually two half full packages in your backpack along with a lighter and breath fresheners.

I was stunned. I didn’t know what to think. How could you smoke? Even more practical questions came to mind. When and where did you smoke? How could I not known you were a smoker? I convinced myself that it must be a very causal thing. Certainly not a daily activity.

At the time, the ICU doctors were trying to sort out why your blood pressure spiked enough to cause a bleed. They had no answers. I shared my new information with the intensivist in the ICU. He raised his eyebrows while considering the information, and then said “It may be a factor but it’s possible that it is not the cause.” There is that word again. ‘Possible. ’ Earlier that week the neurosurgeons said “possible reasonable recovery”. What does ‘possible’ really mean? 1% or 99% or somewhere in between.

Smoking has affected my family before. My Dad smoked for many years and the last years of his life his mind drifted from present day to other times and places due to a number of transient ischemic attacks (TIA’s). I lost him before I was ready to. Now you. I’m not ready to loose you and I won’t let our children loose their father like I lost mine.

You have been stripped bare of all you rough outer layers and you are almost naked emotionally. The last layers you have chosen to strip off yourself. Like a Band-Aid or like the PEG tube from yesterday. Pull them off or pull it out and do it quickly despite the pain. It’s as if you want to start over again.

Naked like the day you born. Naked and innocent, ready to be shaped and draped by the world around you.

You said that confessing to me was the hardest. Now that’s done, you can bare yourself to others. Since my visit to you this afternoon, you called me this evening and told me that you told someone else your confession. I am proud of you.

This was a secret that you lived with for a long time. You felt the shame of it every day. You couldn’t confess to me because you couldn’t confess to yourself. You feel relieved that you told me. I am relieved too. The topic has been our ‘elephant in the room’ since your stroke … it’s there, but no one wants to talk about it.

You said if I wanted to write about this I could … but I didn’t until now. I can only really write about my reaction to your news. This is your confession to share with whom you like. If, in the future, you want the world to know then you can tell them, not me. Perhaps you feel that if I expose you, you would be getting the punishment you deserve. Punished for your deception not the activity.

Carrying this around for so long by yourself was your punishment that you forced upon yourself. I wonder if you are confusing the deed with you as a person. You did a stupid thing; you are not a stupid person. Your deception was a bad act; you are not a bad person. I hope that by baring your self, you find forgiveness within yourself … because I have already forgiven you and it is a forgivable act.

Two new streaks have been identified. One is one day longer then your recovery streak. The other starts today. I will be there to cheer you on with this streak too.

Wednesday, January 20, 2010

Note to Readers who want to visit or call Chris

If you plan to be in Halifax and have a little time, Chris would love visitors. The Nova Scotia Rehabilitation Centre is on the corner of Summer Street and University Ave. It’s across University from the VG – Dickson building. Parking is either on Summer Street (meter parking but free on weekends) or the parking lot which is accessible from University Ave. (park for a fee but free on the weekend)

As I understand things now, the therapy sessions are finished by 3-4 pm. Visiting is good after this time. He is in room 723, bed 2 and you can call him in the evenings at 902-473-2700, and the switchboard will put your call through if you ask for Chris Cashen. The children an I plan to try and call him between 7:30 and 8pm each week night so please don’t call then.

If you don’t bring a Tim Horton’s 4X4 I can’t be held accountable for your reception by Chris. (Yes, I know it’s embarrassing to order this but I think that I have gotten all the local Tim Horton’s staff used to the request now – so you won’t get too many odd looks.)

Tuesday, January 19, 2010

Note to Readers

I have a lot of new posts but it's not the right time to bring them out yet. Chris has some phone calls to make first. Please be patient and stay tuned.

Thanks Gwen

Friday January 15 – “This is my Next Step”

This morning I stopped by the hospital on my way to work. You look a little tired and worried. You are nervous. Like a kid, on the first day at a new school. It’s OK to be a little nervous. This is a new stage for you. New people and you will be further from home. I’m nervous too.

Dr Feltmate and the stroke coordinator stopped by this morning. They wanted to see you off on your next adventure. Both of them recalled your first days at the Colchester Hospital. They are both amazed at the progress and are very hopeful for your future.

You could hardly talk, you couldn’t eat food except for thickened liquids. You couldn’t control you bladder or bowels. You had a urinary tract infection and you were still on blood pressure medication. You couldn’t even sit on the edge of the bed by yourself.

You have done well. You have hit your stride now.

You tried to get Dr. Feltmate and the stroke coordinator to estimate how long you’d be in rehab. They were both too clever to speculate. You want to be finished by Tara’s birthday on the 8th of March. That’s only 52 days. I doubt that you will be done that fast. I am emotionally prepared for three to four months. Quinn’s Birthday is May 8th. If you can be home by then I’d be thrilled.

You’ve been away from us for 138 days. I sense we are in the back half of your marathon. You have found a pace that is working for you and your moral is high. Two very important things for running the second half of the distance.

I kiss you good bye and promise to see you in about 12 hours in Halifax. “This is my next step.” You said.

The day at work was really busy. I had a very sick dog that I was really worried about in the hospital. The day went by too fast and my work was still not finished. I thought I was holding it together until it was obvious that I wasn’t going to get away from work in time to pick up the children, pack and drive to Halifax to see you.

I tried to find a phone number and after several failed attempts. No phone number listed in the web site, 411 was no help … they gave me the wrong number twice. I was just about ready to cry out in frustration when I found a phone number on a related web site. It worked but no answer! I called again and actually got a real human who held my hand and lead me to your nurse, Dave. You were eating in the dining room. He suggested I call back in 15 minutes. When I called, you answered on the first ring. “Roscoe’s Meat and Wicker”. It was music to my ears. As always, you knew just what to say and when to say it to make me calm.

I tell you about my day and how it got out of control ... a story you’ve heard a thousand times. I didn’t want to leave the sick dog alone tonight and yet I wanted to be with you. You patiently listen and said “Would you feel better if I said stay there tonight and come in the morning?” Again you always say the right things. So we decide that the children and I would stay home tonight and head off to see you in the morning.

You share with me your day. The ambulance ride was much better then the last rides that you’ve had. The October ride to Truro from Halifax was a shock for both of us and the rides at Christmas time were on the day my Dad died. Today, you had a good chat with the EMT about, of all things, midwifery.

The staff of the NSRC you’ve met are nice and the facility is impressive you said. You had two meetings with doctors who assessed your abilities. I suppose that they will work out a treatment plan for your stay there. Once they see how you progress through your first baby steps, they may make adjustments to the plan.

Eating in the dining room is already a step forward. When I called, you had just met with some fellow patients. There was a movie showing in a common room that you thought you’d attend. You sounded happy and calm and settled already. You sounded like you felt at home. Your calmness made me calm.

NSRC is your last stop before home.

As the animal hospital closes for the night, Joye brings the little dog that I am worried about to the house so I can watch him over night. After getting the children settled and the little dog tucked to bed for the night, I pack for our first visit to you in rehab.

I long to join you in this part of the marathon.