Lately, the mornings have been real battle to get the children to school on time. Determined to change this disturbing pattern, I got them both in bed at a record time of 8:15 last night. This morning I woke up at 6:15, wondering if my plan had worked. I look out the window – wet and blowy. The radio mentioned snow. Snow – oh gosh I think. I still don’t have my snow tires on yet – Thank God you are not in Halifax yet. I add snow tires to the mental list of things to do.
Tara gets up before Quinn as usual. She is not my problem morning child. Quinn groans and rolls over with a ‘Do not disturb’ grunt. Tara meets me in the bathroom. We wash up and do hair. She goes to her room to get dressed and looks out the window again – there’s snow – a lot of snow falling thick and furious. “OH wow!” She cries out “It’s snow” She starts to sing an ad lib snow song “Snow, snow, snow, It’s snowing, snowing, snowing!” At the sound of this – Quinn bolts right up and out of bed. “Snow!’ says Quinn “This is a great morning!”
We make to school with plenty of time to spare. That even counts in a mad search for snowsuits and boots. I’d like to think my determined mothering skills had something to do with it but I think I have to give credit to the snow. Now if only I can make it snow like that every day between the hours of 6-7 AM. We could abandon the alarm clock.
You are going to make the best recovery you can make – whatever the out come – it will be the best it can be and it will feel all right.
When I picked up Tara’s outfit for the Truro Youth Singer performance next Tuesday for the Olympic flame ceremony. I met a fellow runner, Trish. She mentioned how she had taken up running recently and had participated in the Rum Runner relay. She enjoyed it very much. Her leg was a little over 11 km. Before the race the furthest she had run was 10 km. She pushed herself a bit – but she did it.
Now she is working on doing a half marathon in February. She mentioned that the group of people that she runs with really supports her and helps her stay committed to the goal.
As I walked to the car I was thinking about the running group she is part of. Her running group is her morale team. Running may be identified as an individual’s sport, but for you and Trish and I expect many others, running is a team sport too.
Currently, you have your team: the hospital staff and community team who is there to build your morale. But your level of commitment to running every day went beyond most people’s commitment. A running group extends an individual’s commitment to be accountable to others but when you made the commitment to run every day regardless of who else is running or how you feel or what’s the weather is like or whether you even had enough time to do it; you were ultimately only accountable to yourself. No one else would put those demands on you. Only you. Nothing else motivates you except your desire to do it and keep the strek going. Your strength is completely intrinsic.
Every day, you will have to find the “Snow!” in you life to keep your motivation going. Because every day of your recovery is a another day in this streak of getting better.
After school I ask Quinn how was ‘Friday Fun’ at school. Quinn is disappointed that the snow didn’t stay. Ok, snow is not the best motivator for some things. You will have to find your reason to make each day the best it can be.
You ask me to put in the journal that you love me and you need me. This is the result of an episode earlier in the day. I think you might have been dozing and overheard a conversation, perhaps in the hallway or on the TV, about severe diarrhea and dehydration. “Dehydration can kill you.” You tell me. You are convinced that you were suffering from severe dehydration and you wanted some one to call me because you were scared.
No logic, at the time, could calm you. You were scared and you wanted me. “Write in the journal, I love you and I need you.” You plead. So people will listen if I’m scared.
Reality and imaginary lines are still blurred as well as time. We have to be patient.
A note to visitor’s of Chris: If he wants you to call me – that’s OK – you can reach me at work 893-2341. If I’m not there – they will be able to track me down. The Nurses will also have my phone numbers.
Yesterday’s meeting was very comforting but also a little difficult. No one in the room, except you and I, wanted to deny the possibility that you will have a physical legacy from the stroke. I suppose they have all seen stroke victims and don’t want to foster false hope.
What’s wrong with giving hope. Hope can’t be deposited in the bank or eaten as food but hope is fertile ground for many other good and positive thoughts that may actually lead to a difference. Who cares if a health care professional gives you hope and you end up proving them wrong. Hope is a good thing … hope is what got us to this point.
In an effort to find some hope for you to hold on to, I found some emails that were sent to us in the very early days since your stroke. They were from Linda. She wrote about her husband, Marc. He had a stroke April 2008. They are both runners and he is 46 years old and the father of two girls, 10 and 12 years. He was not as lucky as you, he lost speech as well as mobility on the right side. Linda goes on to say:
“Marc spent 4 months at the rehab centre here in Fredericton doing intensive therapy all day, every day. He made steady improvement, going from not walking to gradually getting rid of his wheelchair, to getting rid of his cane this past spring. He does not have use of his right arm and speech is his most frustrating obstacle, since he totally lost his speech. He is much better and can get out some sentences and continues to improve. His right hand will probably never be functional but we never give up. He is very determined and has an excellent attitude, which has gotten him where he is now. Last year, November 2008, 7 months after the stroke, he walked the 5k at the Moncton Legs for Literacy race. This year he is going to return and RUN the 5K at the same event. He can't run as he did before. It's more of a Terry Fox gait, but he is happy to be back out there.”
The race to rehab may be a little less urgent because yesterday, Jane said that the Rehab hospital has reduced it’s capacity to accommodate the H1N1 virus. It would be a real shame if the flu epidemic affected your recovery this way.
In your more positive moments you envision the last leg of the Cabot Trail relay being rather special event where the whole team would run it together along with you. This thought helps to balance the other vision you have - not being able to run again.
In the evening, Tara Quinn and I come to your room with pizza and a movie. It feels good to re establish a family tradition. Your room is cozy and we snuggle together. It feels like comfortable family time.
Saturday, November 7, 2009
Thursday November 5 - I don’t want to be a rehab.
In this marathon – you are my heart. Every step of improvement you made is like a heart beat to me – your heart makes blood, filled with energy, flow through my body. It gives me energy to keep going. The wonderful community of people around us is really my brain. The social network is like a network of neurons that inspire and canal the energy to keep me running for you.
Every timely rhythmic beat enables me to run and keep going. I can’t do this with out you. You are my heart.
If there is a stumble in your recovery or a little hiccup in your care, I falter – my heart misses a beat and I stumble. Thankfully, the large community of friends helps me find a way to be picked up again.
Dr. Feltmate comes to see you. You tell her that you feel a little isolated and lonely. No doubt partly the result of being moved to a new hospital and the MRSA isolation rules that applied over the weekend. We discuss that the private room may not be stimulating enough for you. A move to a semiprivate room would have more activity but more difficult for the children to visit freely. For the present, we decide to stay put.
You are frustrated with your interaction with your world. You have difficulty working the call button for the nurse and the buttons on the TV. Even eating at time is difficult – your depth perception seems good one moment then quite bad – the next moment. You have to re-learn things. After Hollis’ stroke, he was unable to remember how to use the microwave – the machine was completely foreign to him. As much as I would love it if you give up watching TV, I expect you will be highly motivated to learn how to operate the TV again. The dishwasher may be another story.
You express concern to Dr. Feltmate that another stroke could happen again. This possibility scares both of us. The final diagnosis – Idiopathic critical hypertension – which is another way of saying ‘We don’t know’. Currently, your blood pressure is measured frequently. And your blood pressure medication has gone from, a whopping, five different drugs down to a simple diuretic. Dr. Feltmate says that ongoing monitoring will be a given as you recover.
Over the past week you have frequently, asked me “Am I having another brain bleed – look at my scar - do you see a swelling?” You feel you don’t get good sleep at night. You are restless with worry. This would aggravate any emerging depression.
The fear of another stroke and the frustration of adapting to your new body along with poor sleep are good reasons to be depressed.
You had said, just a few moments before Dr. Feltmate came in, that you felt depressed. I decided to take that as a lead – a call for help. I tell Dr. Feltmate. I am concerned that depression is a given – At present I don’t think you are depressed – not by my definition.
When you get overwhelmed and sad, a change in conversation can help you find your way to hope again. But without someone leading you away from depressing and negative thoughts – you naturally migrate to them. I am very worried that depression will have you in full grip when you are at the rehab hospital and I will less able to support you and advocate for you.
Since most antidepressants only start to work after a few weeks, it’s better to start them now then later. By starting them now – we are treating toward to future.
To help cheer you up, I go out and rent some DVD’s for you. Comedies are the prescription for a time like this.
While I’m out, the Kristin and Ainsley have you fitted into new chair. This one has gears! Forward and reverse. You can propel it by pumping your right hand back and forth and twist the handle to steer. The chair is designed so that you sit upright and use your core muscles. This is your next step closer to rehab.
After Dr. Feltmate leaves, you get sad and say, “I owe an awful lot of people so much.” “You don’t owe any one anything” I reply “You have rewarded their good deeds by not dying and making progress every day.” You groan, “I don’t want to be a burden.”
“You are not a burden, you will never be a burden.” I pleaded, ”You will fight this injury and heal the best way you know how, as long as you keep trying and never give up – you will not EVER be a burden.”
I told you that we must not think in terms of owing people and being a burden – those are negative thoughts. I asked you “When you decide to run a marathon, do you think of it as a burden or a challenge?” “A challenge.” you said. Then you added “If I have to run it right now, I would say that it’s a challenge that’s a burden.”
“I don’t want to hear the word burden.” I said. “I don’t like that word. Promise me that from now on – every time you think burden you will say rehab.” Tears are flowing now. To this you answer in your deadpan slow talking way – I still can’t tell what you are really thinking – “I don’t want to be a rehab.” As always – you do the very thing that made me fall in love with you – you made me laugh – even when I don’t feel much like laughing.
I remind you of the Pay it Forward movie. “You have paid it forward all your life, now it’s time to let other people pay it forward. Think about all people who you have helped. Donald, people at the church, people at the school, fellow runners. You have paid it forward. All you have to do is keep working at getting better.”
At the mention of Donald’s name, you ask me to please visit with him and let him know that you haven’t forgotten him ... You are still paying it forward.
I discovered that you have a bit of a rash on your back. It’s itchy and I scratch your back of you. As I’m doing this I jokingly say, “I will make you a deal – for every 29 back rubs I give you – you owe me one.” To this you reply “There is nothing I’d like more then to scratch your back while watching the sunset.” “Great” I said. “I am holding you to this – On our 29th anniversary – you get to scratch my back while watching the sunset.” I warn you that I am writing it in the journal so I can hold you to it.
Juanita, Farley, Maddie and Mum visit. You try to engage Maddie but she won’t have anything to do with you. She holds her distance. You eat your lunch. She seems interested in what you are eating. You offer her a spoonful of tapioca pudding. She accepts it and likes it. She came a little closer, still a little unsure but intrigued, and takes another mouthful. It’s almost a replay of the hours you spent trying to tame our newest, previously a wild scaredy cat, Himmy.
At 1 pm we start the family meeting. Your team gather around your bed and introduce themselves. They are: Jane, the social worker, Kristin and Jacinda, physio, Ainsley, occupational therapist, Liz, the regional stroke coordinator, Cindy and Sarah the dieticians. Seven people plus Dr. Feltmate (who couldn’t make the meeting) are your team. After the introductions, you announce “I’m Chris and I’m the patient.”
Cindy, the dietician is impressed with your ability to swallow so well – not often can a patient go from tube feeding to thickened liquids to no restrictions this quickly. You did very well in the swallow challenge. Cindy’s goal is to get your weight up to a more normal weight – possibly about 25 pounds. You will get regular meals be day and the peg tube feedings at night.
We discuss your visual field. In Halifax, it was thought that you have a visual deficit on the left side. A consult with an ophthalmologist is planned. There is a difference between what you can see and what you attend to visually – again this refers to your acknowledgement to your left.
The new wheel chair will liberate you. The way the chair is designed will help your core strength. And keep thing interesting. You feel that you are improving. You said you would like to get to some area where you can really practice with the wheel chair. You feel this would help boost your confidence in using the wheel chair and for rehab.
A rehab assessment was done at the QE2 and you were found not ready yet for rehab. Nadine is the rehab assessor and she will follow-up with your progress and determines when you can go to rehab. This can be done by tele-health and save a trip to Halifax.
You talk about your phantom pain. The pain that comes randomly and goes before you can even identify where it’s coming from. Some of the stretching exercises cause the pain but you feel that your
You ask the group the question that has been on your mind. “Do you see me running in a year?” You are met with a moment of silence and then everyone kicks in their words of support. It will take time and patience is important and don’t get stuck on too big a goal. You have to take little steps. It’s hard work and you must balance the work with rest.
The last goal was swallowing well – you passed mileage marker – sprinting by. At the present the next goal to get ready for rehab. Core strength.
Jane asks you how are your children doing. You feel you are neglecting them. You are so happy to see you. “they are awesome and cooperative.” You say. Jane points out that you are showing them something that most parents never get to show their children – how to keep going in the face of adversity. How to keep going and just do it. They will notice
You talk about not getting good rest, when you can’t rest you feel abandoned and when you want something, you can’t do much for yourself. You are very dependent on the nurses to come when you call. This is compounded your distortion of time.
At this point you are quick to say that your nurses have been great. In fact I told the team about your inquiries about Vickie’s marital status. Someone suggests that you may want to have a harem and I might have something to say about it. But you say “Gwen will still be a head of the harem.” Thanks!
You feel good about the physio sessions and you feel trust, you love the pace and honesty that exists between you and Kristin and Jacinda. You are worried about failure.
We point out to you there is no failure – the only failure you can have at this point is failure by not trying.
You are concerned that Halifax rehab will be like a boot camp … with whips! Kristin gives you a little outline of what to expect.
At the family meeting you say that you are scared of being alone. This concerns me too, especially on the days that I am working. I also hate leaving you alone after a visit. It will be a while before the antidepressants are working. The private room enables to have visitors outside the visiting time because you have no roommates. There is a lot of latitude to the visiting rules. The nursing staff recognizes how important it is for you to have social interaction. You need us to cheer you on right now.
You wonder aloud to the team how much you would be pushed at rehab. You will be your biggest drill sergeant for improvements you will have the highest expectations for your improvement.
“Do you think I’ll ever run again?” Kristin says every stroke is different and every recovery is different. She says that she never gets to see the finished result because people go off to rehab after she is done.
Your team, with the exception of Cindy, is a group of self-professed non-runners. But they pledged, that if you get better and show them how well you do, that they would run a little way with you.
You are leery of your ability to run. Jane says that recovery is a long process. Liz joins in and reminds you that you didn’t suddenly wake up on day and decide to run a marathon. You started running a kilometer, then two and gradually build up your strength and endurance. The goal to do a marathon was a long way off but you start one step at a time.
You wonder if it’s unrealistic to want to run again in a year or two. “I don’t think any dream is something you should deny.” Says Jane.
At the end of the meeting, Jane asks if you have any more questions. You reply in your usual straight faced way “Are we exchanging Christmas presents?” Your team is getting to understand your sense of humour.
From your bed you read the caption on one of the pictures on the wall opposite the bed. ‘Are you weird or something!’ It’s the picture of you taken with Mady (then 5 years old, a daughter of friends in Ottawa). We vacationed with them in PEI the summer of 1999. You loved to tease Mady, and Mady would ask you “Are you weird or something?” The two of you tossed this phrase back and forth for the whole week. It was a game. A game that neither of you forgot. Since that summer, whenever we met them, the words ‘Are you weird or something’ would come up. The caption is with a picture of you and Mady flaked out on the sofa having an afternoon nap.
Today you wondered aloud “I wonder, what she would think of this now?”
Just as I leave to pick up the children, your parents call and Mildred and Laurie come for a visit. I am relieved that you wouldn’t be alone.
I meet Kevin at the house and send the chickens off with him to spend the winter with him. He said that I should tell Tara and Quinn “They can visit any time.” He won’t do anything with the chickens except let them live happy chicken lives. Kevin is shaken by your stroke. He is dealing with another friend’s illness too – which he found out about the same day as he heard about your stroke. He is rooting for you. He said he has always admired your fathering instincts and nurturing patience. I think Kevin may discover that he has those instincts too as he cheers you along the way to your journey.
Before bed as I fold laundry Janice calls to share more details of her visit with you. She is so impressed with how far you have come. She mentioned that those days or nights, when you are lonely and I don’t want to leave you, We should call her and the two of you can have a talk while I slip away. This though comforts me knowing you won’t feel so alone.
You are my heart. I need you to continue to improve a little (or a lot) every day – that is what feeds me and keeps me going. One step after another. One foot in front of the other. I need you to keep going.
Every timely rhythmic beat enables me to run and keep going. I can’t do this with out you. You are my heart.
If there is a stumble in your recovery or a little hiccup in your care, I falter – my heart misses a beat and I stumble. Thankfully, the large community of friends helps me find a way to be picked up again.
Dr. Feltmate comes to see you. You tell her that you feel a little isolated and lonely. No doubt partly the result of being moved to a new hospital and the MRSA isolation rules that applied over the weekend. We discuss that the private room may not be stimulating enough for you. A move to a semiprivate room would have more activity but more difficult for the children to visit freely. For the present, we decide to stay put.
You are frustrated with your interaction with your world. You have difficulty working the call button for the nurse and the buttons on the TV. Even eating at time is difficult – your depth perception seems good one moment then quite bad – the next moment. You have to re-learn things. After Hollis’ stroke, he was unable to remember how to use the microwave – the machine was completely foreign to him. As much as I would love it if you give up watching TV, I expect you will be highly motivated to learn how to operate the TV again. The dishwasher may be another story.
You express concern to Dr. Feltmate that another stroke could happen again. This possibility scares both of us. The final diagnosis – Idiopathic critical hypertension – which is another way of saying ‘We don’t know’. Currently, your blood pressure is measured frequently. And your blood pressure medication has gone from, a whopping, five different drugs down to a simple diuretic. Dr. Feltmate says that ongoing monitoring will be a given as you recover.
Over the past week you have frequently, asked me “Am I having another brain bleed – look at my scar - do you see a swelling?” You feel you don’t get good sleep at night. You are restless with worry. This would aggravate any emerging depression.
The fear of another stroke and the frustration of adapting to your new body along with poor sleep are good reasons to be depressed.
You had said, just a few moments before Dr. Feltmate came in, that you felt depressed. I decided to take that as a lead – a call for help. I tell Dr. Feltmate. I am concerned that depression is a given – At present I don’t think you are depressed – not by my definition.
When you get overwhelmed and sad, a change in conversation can help you find your way to hope again. But without someone leading you away from depressing and negative thoughts – you naturally migrate to them. I am very worried that depression will have you in full grip when you are at the rehab hospital and I will less able to support you and advocate for you.
Since most antidepressants only start to work after a few weeks, it’s better to start them now then later. By starting them now – we are treating toward to future.
To help cheer you up, I go out and rent some DVD’s for you. Comedies are the prescription for a time like this.
While I’m out, the Kristin and Ainsley have you fitted into new chair. This one has gears! Forward and reverse. You can propel it by pumping your right hand back and forth and twist the handle to steer. The chair is designed so that you sit upright and use your core muscles. This is your next step closer to rehab.
After Dr. Feltmate leaves, you get sad and say, “I owe an awful lot of people so much.” “You don’t owe any one anything” I reply “You have rewarded their good deeds by not dying and making progress every day.” You groan, “I don’t want to be a burden.”
“You are not a burden, you will never be a burden.” I pleaded, ”You will fight this injury and heal the best way you know how, as long as you keep trying and never give up – you will not EVER be a burden.”
I told you that we must not think in terms of owing people and being a burden – those are negative thoughts. I asked you “When you decide to run a marathon, do you think of it as a burden or a challenge?” “A challenge.” you said. Then you added “If I have to run it right now, I would say that it’s a challenge that’s a burden.”
“I don’t want to hear the word burden.” I said. “I don’t like that word. Promise me that from now on – every time you think burden you will say rehab.” Tears are flowing now. To this you answer in your deadpan slow talking way – I still can’t tell what you are really thinking – “I don’t want to be a rehab.” As always – you do the very thing that made me fall in love with you – you made me laugh – even when I don’t feel much like laughing.
I remind you of the Pay it Forward movie. “You have paid it forward all your life, now it’s time to let other people pay it forward. Think about all people who you have helped. Donald, people at the church, people at the school, fellow runners. You have paid it forward. All you have to do is keep working at getting better.”
At the mention of Donald’s name, you ask me to please visit with him and let him know that you haven’t forgotten him ... You are still paying it forward.
I discovered that you have a bit of a rash on your back. It’s itchy and I scratch your back of you. As I’m doing this I jokingly say, “I will make you a deal – for every 29 back rubs I give you – you owe me one.” To this you reply “There is nothing I’d like more then to scratch your back while watching the sunset.” “Great” I said. “I am holding you to this – On our 29th anniversary – you get to scratch my back while watching the sunset.” I warn you that I am writing it in the journal so I can hold you to it.
Juanita, Farley, Maddie and Mum visit. You try to engage Maddie but she won’t have anything to do with you. She holds her distance. You eat your lunch. She seems interested in what you are eating. You offer her a spoonful of tapioca pudding. She accepts it and likes it. She came a little closer, still a little unsure but intrigued, and takes another mouthful. It’s almost a replay of the hours you spent trying to tame our newest, previously a wild scaredy cat, Himmy.
At 1 pm we start the family meeting. Your team gather around your bed and introduce themselves. They are: Jane, the social worker, Kristin and Jacinda, physio, Ainsley, occupational therapist, Liz, the regional stroke coordinator, Cindy and Sarah the dieticians. Seven people plus Dr. Feltmate (who couldn’t make the meeting) are your team. After the introductions, you announce “I’m Chris and I’m the patient.”
Cindy, the dietician is impressed with your ability to swallow so well – not often can a patient go from tube feeding to thickened liquids to no restrictions this quickly. You did very well in the swallow challenge. Cindy’s goal is to get your weight up to a more normal weight – possibly about 25 pounds. You will get regular meals be day and the peg tube feedings at night.
We discuss your visual field. In Halifax, it was thought that you have a visual deficit on the left side. A consult with an ophthalmologist is planned. There is a difference between what you can see and what you attend to visually – again this refers to your acknowledgement to your left.
The new wheel chair will liberate you. The way the chair is designed will help your core strength. And keep thing interesting. You feel that you are improving. You said you would like to get to some area where you can really practice with the wheel chair. You feel this would help boost your confidence in using the wheel chair and for rehab.
A rehab assessment was done at the QE2 and you were found not ready yet for rehab. Nadine is the rehab assessor and she will follow-up with your progress and determines when you can go to rehab. This can be done by tele-health and save a trip to Halifax.
You talk about your phantom pain. The pain that comes randomly and goes before you can even identify where it’s coming from. Some of the stretching exercises cause the pain but you feel that your
You ask the group the question that has been on your mind. “Do you see me running in a year?” You are met with a moment of silence and then everyone kicks in their words of support. It will take time and patience is important and don’t get stuck on too big a goal. You have to take little steps. It’s hard work and you must balance the work with rest.
The last goal was swallowing well – you passed mileage marker – sprinting by. At the present the next goal to get ready for rehab. Core strength.
Jane asks you how are your children doing. You feel you are neglecting them. You are so happy to see you. “they are awesome and cooperative.” You say. Jane points out that you are showing them something that most parents never get to show their children – how to keep going in the face of adversity. How to keep going and just do it. They will notice
You talk about not getting good rest, when you can’t rest you feel abandoned and when you want something, you can’t do much for yourself. You are very dependent on the nurses to come when you call. This is compounded your distortion of time.
At this point you are quick to say that your nurses have been great. In fact I told the team about your inquiries about Vickie’s marital status. Someone suggests that you may want to have a harem and I might have something to say about it. But you say “Gwen will still be a head of the harem.” Thanks!
You feel good about the physio sessions and you feel trust, you love the pace and honesty that exists between you and Kristin and Jacinda. You are worried about failure.
We point out to you there is no failure – the only failure you can have at this point is failure by not trying.
You are concerned that Halifax rehab will be like a boot camp … with whips! Kristin gives you a little outline of what to expect.
At the family meeting you say that you are scared of being alone. This concerns me too, especially on the days that I am working. I also hate leaving you alone after a visit. It will be a while before the antidepressants are working. The private room enables to have visitors outside the visiting time because you have no roommates. There is a lot of latitude to the visiting rules. The nursing staff recognizes how important it is for you to have social interaction. You need us to cheer you on right now.
You wonder aloud to the team how much you would be pushed at rehab. You will be your biggest drill sergeant for improvements you will have the highest expectations for your improvement.
“Do you think I’ll ever run again?” Kristin says every stroke is different and every recovery is different. She says that she never gets to see the finished result because people go off to rehab after she is done.
Your team, with the exception of Cindy, is a group of self-professed non-runners. But they pledged, that if you get better and show them how well you do, that they would run a little way with you.
You are leery of your ability to run. Jane says that recovery is a long process. Liz joins in and reminds you that you didn’t suddenly wake up on day and decide to run a marathon. You started running a kilometer, then two and gradually build up your strength and endurance. The goal to do a marathon was a long way off but you start one step at a time.
You wonder if it’s unrealistic to want to run again in a year or two. “I don’t think any dream is something you should deny.” Says Jane.
At the end of the meeting, Jane asks if you have any more questions. You reply in your usual straight faced way “Are we exchanging Christmas presents?” Your team is getting to understand your sense of humour.
From your bed you read the caption on one of the pictures on the wall opposite the bed. ‘Are you weird or something!’ It’s the picture of you taken with Mady (then 5 years old, a daughter of friends in Ottawa). We vacationed with them in PEI the summer of 1999. You loved to tease Mady, and Mady would ask you “Are you weird or something?” The two of you tossed this phrase back and forth for the whole week. It was a game. A game that neither of you forgot. Since that summer, whenever we met them, the words ‘Are you weird or something’ would come up. The caption is with a picture of you and Mady flaked out on the sofa having an afternoon nap.
Today you wondered aloud “I wonder, what she would think of this now?”
Just as I leave to pick up the children, your parents call and Mildred and Laurie come for a visit. I am relieved that you wouldn’t be alone.
I meet Kevin at the house and send the chickens off with him to spend the winter with him. He said that I should tell Tara and Quinn “They can visit any time.” He won’t do anything with the chickens except let them live happy chicken lives. Kevin is shaken by your stroke. He is dealing with another friend’s illness too – which he found out about the same day as he heard about your stroke. He is rooting for you. He said he has always admired your fathering instincts and nurturing patience. I think Kevin may discover that he has those instincts too as he cheers you along the way to your journey.
Before bed as I fold laundry Janice calls to share more details of her visit with you. She is so impressed with how far you have come. She mentioned that those days or nights, when you are lonely and I don’t want to leave you, We should call her and the two of you can have a talk while I slip away. This though comforts me knowing you won’t feel so alone.
You are my heart. I need you to continue to improve a little (or a lot) every day – that is what feeds me and keeps me going. One step after another. One foot in front of the other. I need you to keep going.
Thursday, November 5, 2009
Wednesday November 4 - Singing Away Your Fears
Tara woke up with a bad dream – Goblins in the hospital room and bed. Scary stuff mixed up with you. She was scared and ran to my bed first thing in the morning. After a little cuddle, she decided that a shower would help her shake the worry. As she had a shower, she sang at the top of her lungs a song that she had learned at the Truro Youth Singers. “We are children, we are the light…”. After a few repeats of the words – I hear percussion in the shower – stomping her feet and clapping.- a full performance! After the shower she seemed much better. “Mummy, I know how to get rid of goblins now – you just sing them away – it works well.”
If only singing away your fears could be that easy.
Last night Marianne asked me if I have seen a counselor yet – “No, I don’t know when I’d find time” But she has a point and I’ve been thinking about it. I am definitely living on the edge. It takes very little to tip me over and everything seems to crash down until I have a good cry then I get my next wind and I pick up where I left off and keep going. I tip from control to chaos and back to control – at least I think I can fake the control appearance for a while.
Quinn is learning this from me – small things are setting him off – the gym bag caught in the car door, confusion about a homework assignment - little things that would not have bothered him before – bother him now. Unless he is held by the hand – he can’t cope with the little things that go wrong.
When you have a good day – I have a good day. The children are witnessing my coping strategy and are learning from it – It’s up to me to make it a good learning experience.
At the present, I feel I’m learning more good stuff from them and they are from me.
Tara seems to be handling this whole journey the best – I need to learn from her … maybe I should sing in the shower too.
I think I need some outside thinking to get me on the right track.
The challenge for you in the months (and years) to come will be for you to redefine yourself. Until now you defined your self as a runner – but you are so much more then that – you are a father, husband, friend, runner, soccer coach, baseball fan, wood worker, comedian and many more things to different people. All these roles enabled you to created a large group of friends and they are supporting you.
Running was one part of you - it was not all of you. You will just need to find another outlet of this energy – it still be running or it might be something else. I wonder if part of the rehab for you is to put some thought into this process of redefining yourself.
Part of your brain that gives you an identity may be damaged – so the real challenge will be finding your new identity. Your friends and family will be here for you to help hold the ‘mirror’ up for you so you can see yourself for who you are. Our love and support will be key in helping you through this important part of recovery.
Your role will evolve over time – for now - your role is the ‘recovering brain injured man’. Later, that will evolve to a new role – possibly related or maybe not related. That remains to be seen.
I visit you after work, you are in a new chair with less head support – it’s designed to make you work your core body strength. The wheel chair allows you to move under your own steam – although it’s a little difficult – it was very good to see you move about without help..
You passed your swallow test! You have graduated to soft foods. But – generally the worry of aspiration has passed. That means pizza is a go for tomorrow! We will have a pizza and movie night to celebrate.
You wondered aloud while in the chair about your left hand – ‘the entity’ you called it – “I feel sorry for this guy.” You say. “I think I’ll sell him. How much do you want for him? Make me an offer.” You say to the physio staff. Is this a dry humor approach to the whole organ donation thing?
I read your Truro Daily story again – You cried again – “Don’t make me cry anymore.” You say. Instead, I read a poem written by a young lady we know. Singing away your fears Rhiannan’s poem to you – we both cried.
Quinn got a special ‘Gotcha’ card (= a special card handed out to the children when they behave well in school) from his guidance teacher today. On the back was a plan to help him feel better when he felt sad. It said:1) Change the Channel, 2) Write on the Worry wall and 3) Play with Luke. He seems so much better – having his own plan for coping enables him. It allows him to feel bad because now he has a recipe to help himself feel better. It’s wonderful advice.
Early in your recovery – I was desperate – I looked for signs everywhere. I found many – they gave me an odd sense of comfort that my logical left brain didn’t understand – now I just look at you for signs of hope – this is far more logical – it sits easier in my mind.
Like last night, I returned to your side after the children were in bed. Terry came over to be with the children. We spent a lot of time talking with Vickie, your nurse. She is very sweet and cute. You asked her about three times if she was married. She’s not … she has a boyfriend. “You are a great catch … I hope he appreciates you.” you said.
We watch a little of the ball game on TV, but the TV doesn’t really hold your interest. Maybe your TV watching streak is like your running streak. Once you have broken the streak – it’s harder to get back into it.
You seem a little confused about whether the current series is the best of seven or the best of five games. I think you are probably just tired.
Vickie asked of some advise for a first time runner, “Well, it’s like Nike said you “Just do it” one step then another, one day and then another, one goal and then another. You just keep it up and keep going.”
Vickie wisely volleyed the ball back into your court. “If you want to get better, then you must “Just do it” and do it every day and the goals will be easier.” You explain. Each day is a challenge – each day you have little goals and each little goal will lead to a bigger goal – and that will lead to the best recovery you can make.
While you do that – I will start singing away the goblins. (Tara says my voice can scare a lot of things away – so why would fear be any different.)
If only singing away your fears could be that easy.
Last night Marianne asked me if I have seen a counselor yet – “No, I don’t know when I’d find time” But she has a point and I’ve been thinking about it. I am definitely living on the edge. It takes very little to tip me over and everything seems to crash down until I have a good cry then I get my next wind and I pick up where I left off and keep going. I tip from control to chaos and back to control – at least I think I can fake the control appearance for a while.
Quinn is learning this from me – small things are setting him off – the gym bag caught in the car door, confusion about a homework assignment - little things that would not have bothered him before – bother him now. Unless he is held by the hand – he can’t cope with the little things that go wrong.
When you have a good day – I have a good day. The children are witnessing my coping strategy and are learning from it – It’s up to me to make it a good learning experience.
At the present, I feel I’m learning more good stuff from them and they are from me.
Tara seems to be handling this whole journey the best – I need to learn from her … maybe I should sing in the shower too.
I think I need some outside thinking to get me on the right track.
The challenge for you in the months (and years) to come will be for you to redefine yourself. Until now you defined your self as a runner – but you are so much more then that – you are a father, husband, friend, runner, soccer coach, baseball fan, wood worker, comedian and many more things to different people. All these roles enabled you to created a large group of friends and they are supporting you.
Running was one part of you - it was not all of you. You will just need to find another outlet of this energy – it still be running or it might be something else. I wonder if part of the rehab for you is to put some thought into this process of redefining yourself.
Part of your brain that gives you an identity may be damaged – so the real challenge will be finding your new identity. Your friends and family will be here for you to help hold the ‘mirror’ up for you so you can see yourself for who you are. Our love and support will be key in helping you through this important part of recovery.
Your role will evolve over time – for now - your role is the ‘recovering brain injured man’. Later, that will evolve to a new role – possibly related or maybe not related. That remains to be seen.
I visit you after work, you are in a new chair with less head support – it’s designed to make you work your core body strength. The wheel chair allows you to move under your own steam – although it’s a little difficult – it was very good to see you move about without help..
You passed your swallow test! You have graduated to soft foods. But – generally the worry of aspiration has passed. That means pizza is a go for tomorrow! We will have a pizza and movie night to celebrate.
You wondered aloud while in the chair about your left hand – ‘the entity’ you called it – “I feel sorry for this guy.” You say. “I think I’ll sell him. How much do you want for him? Make me an offer.” You say to the physio staff. Is this a dry humor approach to the whole organ donation thing?
I read your Truro Daily story again – You cried again – “Don’t make me cry anymore.” You say. Instead, I read a poem written by a young lady we know. Singing away your fears Rhiannan’s poem to you – we both cried.
Quinn got a special ‘Gotcha’ card (= a special card handed out to the children when they behave well in school) from his guidance teacher today. On the back was a plan to help him feel better when he felt sad. It said:1) Change the Channel, 2) Write on the Worry wall and 3) Play with Luke. He seems so much better – having his own plan for coping enables him. It allows him to feel bad because now he has a recipe to help himself feel better. It’s wonderful advice.
Early in your recovery – I was desperate – I looked for signs everywhere. I found many – they gave me an odd sense of comfort that my logical left brain didn’t understand – now I just look at you for signs of hope – this is far more logical – it sits easier in my mind.
Like last night, I returned to your side after the children were in bed. Terry came over to be with the children. We spent a lot of time talking with Vickie, your nurse. She is very sweet and cute. You asked her about three times if she was married. She’s not … she has a boyfriend. “You are a great catch … I hope he appreciates you.” you said.
We watch a little of the ball game on TV, but the TV doesn’t really hold your interest. Maybe your TV watching streak is like your running streak. Once you have broken the streak – it’s harder to get back into it.
You seem a little confused about whether the current series is the best of seven or the best of five games. I think you are probably just tired.
Vickie asked of some advise for a first time runner, “Well, it’s like Nike said you “Just do it” one step then another, one day and then another, one goal and then another. You just keep it up and keep going.”
Vickie wisely volleyed the ball back into your court. “If you want to get better, then you must “Just do it” and do it every day and the goals will be easier.” You explain. Each day is a challenge – each day you have little goals and each little goal will lead to a bigger goal – and that will lead to the best recovery you can make.
While you do that – I will start singing away the goblins. (Tara says my voice can scare a lot of things away – so why would fear be any different.)
Tuesday November 3 - Scared to Have Faith
Dr. Feltmate came to visit – we had a good talk. She is going to arrange for a local urologist to visit you. Dr. Feltmate is a patient attentive listener. You expressed worries about the physio and pain. She consoles you.
She brought me a book to read that a classmate had written after his brain injury. ‘Locked In, Locked Out’ by Shawn Jennings MD . He is a pysician from new Brunswick who had a car accident and a major brain bleed. He writes about his experiences and recovery. He was unable to speak for nine months and yet he got better. This book looks like it’s a must-read … for both of us.
The MRSA precautions have been lifted – Yeah – we can really hold hands again. This will make it easier for the nurses too.
You ask me “Please come back tonight and stay with me until I fall asleep.” You are very scared of being alone. You had a very bad dream that is still causing some anxiety. You are quite frightened of being alone.
You feel sorry for your left side – sorry for ‘that guy’ - that ‘guy’ is you … sorry for you - you are still coming to terms with the scope of your lost – temporary or permanent.
Apparently, you can drink coke – it’s easier to swallow then water. This seems odd to me but there is much more conscious effort to swallow a carbonated drink then other drinks. Once you get a taste of un-thickened Coke – you say “Coke is heaven’.
At lunch yesterday, I popped over to the elections office and got a special ballet form for you, so you could vote from the hospital for the election on Monday. I went to the old Douglas Street School, which is serving as an election office and a flu assessment office. There were a lot of cars there. I almost didn’t go in – I don’t want to get sick – not now. I practically hold my breath and go in. I get the forms and I washed my hands several times. I did it - I got you a form to fill out for a special ballot. You must sign the application form. The authorities compare the signature on your driver’s license to the signature on the application. I was worried that you wouldn’t be able to match your normal signature – but you did – and you did it beautifully!
Marianne came to visit – You call her ‘Marianne the Angel’. You are in a positive mood. I ask Marianne, if she would stay with the children after they are in bed so I could spend and hour or so with you while you fall asleep. She says “Of course” She is an Angel … we have many Angels around us.
Kevin came to visit. You talked about your shared passion for running. We atlked about his farm and about the chickens. He offers to take back the birds. I am relieved to have this offer. I had hoped of this and I had talked to the children about this possibilty. They were OK with it provided that one condition is met. Quinn said, “I know that Penguin Face (rooster) will be eaten but I want him to help hens make eggs first … before he dies.” “Yeah” Tara adds “We want to get eggs from our chickens so that we can hatch them out again in the spring”. I suggest this possibility to Kevin.
Janice called to tell about her last minute visit to you last night. You had Janice and Edwin laughing the whole time - the monologues that you went on were very funny. Janice is still a big fan of you raw sense of humour.
Judy the social worker came to visit briefly – We setup a family meeting for Thurs. I’m not sure what we will discuss – but it’s good to know that that resource is here.
Kristin, physiotherapist and her student, Jacinda along with Ainsley, the occupational therapist, came to visit you. Kristin gets you to do a few things to see where you are in your recovery.
You expressed your worry about falling to Dr Feltmate and she even noted it on your file, so when Kristin came in she was prepped to reassure you that you would be safe with her. You say “I want to have faith to make the leap but I’m scared.”
I guess – it’s hard to have faith right now – You don’t really know yet how close you came to dying.
You ask, “When are you coming tomorrow?” I think you like Kristin and her approach. She couldn’t say when. She said she has a lot of patients to lot at and some or very keen to work. She mentioned one guy who was disappointed yesterday because he waited all day to see her. “I hate disappointing people – He is good – he likes to participate – That’s what I like.” You said, ”Did he have big accident?” “No.” Kristin says – there’s a pause “I did” you say – another pause “You did.” Kristin says in agreement. “But you have come a long way.” She reminds you.
Kristin doesn’t know it yet but I think she will be impressed with you commitment to get better over the next few weeks. Her goal is to get you sitting on the side of your bed and get you to find balance and work your core body muscles. Even the left muscles on the body’s core are affected by the stroke – Getting these muscles to engage first will help the muscles further from the body center to engage later. This is an important skill to have for rehab.
You really are starting to come to terms with the situation – I’m glad you can talk about your fears and feel OK to ask questions. I think that must be a key first step to recovery.
Before your physio session, you were referring to your left hand as “Handy’! After the session, the name changed to the ‘Entity’. To you - your left side seems like a quiet roommate who goes where you go but you are unable to acknowledge it. To you – it’s an acquaintance – not part of you. You are very polite to your left side.
Today, you peed twice in the urinal! Another step forward.
You have a new team in Truro. It seems like a pretty good team. Dr Feltmate, many great floor nurses (most of whom – you have tried to recruit for the Cabot Trail Relay next year), Ainsely the OT, Kristin and Jacinda, physiotherapists, Jane, social worker and even an urologist. He who actually came to meet you on the same day he was contacted about your condition. In addition to the great new team – your old team and hospital are now under visitor restrictions. The children would not have been able to visit you if you were still there.
At bedtime as I tuck Quinn into bed, he is sad. To cheer him up, I suggested “If Daddy passes his swallow test tomorrow, then on Friday we could have one of Daddy’s favorite foods.” Quinn happily guessed that it would be pizza – but then suddenly Quinn cries harder. “What’s the matter?” I ask. Quinn sobs “How can we celebrate and have fun when Daddy is in the hospital – that’s not right!” I explain that I thought that having pizza with Daddy would be a way to celebrate that Daddy is getting better. “Maybe we could have pizza and a movie night on Friday in daddy’s room.” He seems a little consoled.
Marianne comes over and the children are in bed. When I get there, I just missed meeting with your new urologist. He came to see you already! I visit you for about an hour and we talk and hold hands. It almost seems like a date to me. You tell me how great I’ve been – I’m only putting this in the journal once – so I can remind you that you said it at one time – although I expect you’ll probably say – that doesn’t prove anything – I was significantly brain damaged you know.
I’m starting to think that the move to Truro was well-timed move. It will be good for you physically and emotionally. It will be good for us too.
Welcome Home … for now.
She brought me a book to read that a classmate had written after his brain injury. ‘Locked In, Locked Out’ by Shawn Jennings MD . He is a pysician from new Brunswick who had a car accident and a major brain bleed. He writes about his experiences and recovery. He was unable to speak for nine months and yet he got better. This book looks like it’s a must-read … for both of us.
The MRSA precautions have been lifted – Yeah – we can really hold hands again. This will make it easier for the nurses too.
You ask me “Please come back tonight and stay with me until I fall asleep.” You are very scared of being alone. You had a very bad dream that is still causing some anxiety. You are quite frightened of being alone.
You feel sorry for your left side – sorry for ‘that guy’ - that ‘guy’ is you … sorry for you - you are still coming to terms with the scope of your lost – temporary or permanent.
Apparently, you can drink coke – it’s easier to swallow then water. This seems odd to me but there is much more conscious effort to swallow a carbonated drink then other drinks. Once you get a taste of un-thickened Coke – you say “Coke is heaven’.
At lunch yesterday, I popped over to the elections office and got a special ballet form for you, so you could vote from the hospital for the election on Monday. I went to the old Douglas Street School, which is serving as an election office and a flu assessment office. There were a lot of cars there. I almost didn’t go in – I don’t want to get sick – not now. I practically hold my breath and go in. I get the forms and I washed my hands several times. I did it - I got you a form to fill out for a special ballot. You must sign the application form. The authorities compare the signature on your driver’s license to the signature on the application. I was worried that you wouldn’t be able to match your normal signature – but you did – and you did it beautifully!
Marianne came to visit – You call her ‘Marianne the Angel’. You are in a positive mood. I ask Marianne, if she would stay with the children after they are in bed so I could spend and hour or so with you while you fall asleep. She says “Of course” She is an Angel … we have many Angels around us.
Kevin came to visit. You talked about your shared passion for running. We atlked about his farm and about the chickens. He offers to take back the birds. I am relieved to have this offer. I had hoped of this and I had talked to the children about this possibilty. They were OK with it provided that one condition is met. Quinn said, “I know that Penguin Face (rooster) will be eaten but I want him to help hens make eggs first … before he dies.” “Yeah” Tara adds “We want to get eggs from our chickens so that we can hatch them out again in the spring”. I suggest this possibility to Kevin.
Janice called to tell about her last minute visit to you last night. You had Janice and Edwin laughing the whole time - the monologues that you went on were very funny. Janice is still a big fan of you raw sense of humour.
Judy the social worker came to visit briefly – We setup a family meeting for Thurs. I’m not sure what we will discuss – but it’s good to know that that resource is here.
Kristin, physiotherapist and her student, Jacinda along with Ainsley, the occupational therapist, came to visit you. Kristin gets you to do a few things to see where you are in your recovery.
You expressed your worry about falling to Dr Feltmate and she even noted it on your file, so when Kristin came in she was prepped to reassure you that you would be safe with her. You say “I want to have faith to make the leap but I’m scared.”
I guess – it’s hard to have faith right now – You don’t really know yet how close you came to dying.
You ask, “When are you coming tomorrow?” I think you like Kristin and her approach. She couldn’t say when. She said she has a lot of patients to lot at and some or very keen to work. She mentioned one guy who was disappointed yesterday because he waited all day to see her. “I hate disappointing people – He is good – he likes to participate – That’s what I like.” You said, ”Did he have big accident?” “No.” Kristin says – there’s a pause “I did” you say – another pause “You did.” Kristin says in agreement. “But you have come a long way.” She reminds you.
Kristin doesn’t know it yet but I think she will be impressed with you commitment to get better over the next few weeks. Her goal is to get you sitting on the side of your bed and get you to find balance and work your core body muscles. Even the left muscles on the body’s core are affected by the stroke – Getting these muscles to engage first will help the muscles further from the body center to engage later. This is an important skill to have for rehab.
You really are starting to come to terms with the situation – I’m glad you can talk about your fears and feel OK to ask questions. I think that must be a key first step to recovery.
Before your physio session, you were referring to your left hand as “Handy’! After the session, the name changed to the ‘Entity’. To you - your left side seems like a quiet roommate who goes where you go but you are unable to acknowledge it. To you – it’s an acquaintance – not part of you. You are very polite to your left side.
Today, you peed twice in the urinal! Another step forward.
You have a new team in Truro. It seems like a pretty good team. Dr Feltmate, many great floor nurses (most of whom – you have tried to recruit for the Cabot Trail Relay next year), Ainsely the OT, Kristin and Jacinda, physiotherapists, Jane, social worker and even an urologist. He who actually came to meet you on the same day he was contacted about your condition. In addition to the great new team – your old team and hospital are now under visitor restrictions. The children would not have been able to visit you if you were still there.
At bedtime as I tuck Quinn into bed, he is sad. To cheer him up, I suggested “If Daddy passes his swallow test tomorrow, then on Friday we could have one of Daddy’s favorite foods.” Quinn happily guessed that it would be pizza – but then suddenly Quinn cries harder. “What’s the matter?” I ask. Quinn sobs “How can we celebrate and have fun when Daddy is in the hospital – that’s not right!” I explain that I thought that having pizza with Daddy would be a way to celebrate that Daddy is getting better. “Maybe we could have pizza and a movie night on Friday in daddy’s room.” He seems a little consoled.
Marianne comes over and the children are in bed. When I get there, I just missed meeting with your new urologist. He came to see you already! I visit you for about an hour and we talk and hold hands. It almost seems like a date to me. You tell me how great I’ve been – I’m only putting this in the journal once – so I can remind you that you said it at one time – although I expect you’ll probably say – that doesn’t prove anything – I was significantly brain damaged you know.
I’m starting to think that the move to Truro was well-timed move. It will be good for you physically and emotionally. It will be good for us too.
Welcome Home … for now.
Tuesday, November 3, 2009
Monday November 2 – Thalamic Pain: An Ugly Hill in the Marathon
Tara found a newt on the way to school. She held it in her hands and blew on it to warm it up after the cold night air. She was determined to try to save it. She brought it into the school.
While walking to work – I thought about the chickens. I’m worried that I’m going to forget them one day and they will get sick and suffer. I think I have to start to choose what I can do and what I can’t. I know that I can’t continue to do it all – there is just not enough time in the day to do it all.
I have been feeling overwhelmed all weekend. I think it came to a peak with the knowledge that you were started on gabapentin. I foolishly did some research on gabapentin and thalamic pain. The possible diagnosis scares me. Your thalamic pain now can translate into chronic pain later … life long chronic pain that can cause depression and worse. This thought really scares me.
Dr Graham carefully told me that this was the first of many things that can be done. But common sense tells me that if thalamic pain was easy to treat, then there wouldn’t be a lot of ways to treat it because the first attempts at treatment would work. I sense that the thalamic pain is going to be a long, unpleasant journey … a huge ugly hill that winds it’s path so you never know just how much further the hill actually is.
I called Dr. Feltmate’s office this morning. I was put right through to her! (I’m not used to this treatment). I share with her some of my concerns and she addresses them with careful thought and kindness. I think we are on the same page in terms of how to help you the most. She says that you are not ready for rehab yet. That’s what we want to work on. She suggests that the urological workup be done in Truro. Yes! Since I never even met the urologist in Halifax, I have no particular interest in maintaining a relationship with him and his very efficient receptionist. A local consult is much better. Probably faster too. If we are to get rid of the urinary tract infections, timely is important.
We talk a little about depression that often comes with a brain injury. I express my concern that this possibility be addressed early on. Many of the drugs for depression take some time to reach their potential and some don’t work well – so there is a certain amount of trail and error with treatment in order to find the right drug(s) for you.
I don’t believe that you are depressed now. You are sad but not depressed. You are just starting to come to terms with the magnitude of the situation. You are still taking inventory of your losses. Dr. Feltmate feels it’s important that we identify depression before it interferes with your desire to work at getting better.
I like Dr. Feltmate’s approach – I will meet her tomorrow at the hospital.
Today, I met a lady at work, Carolyn, who had an aneurysm 12 years ago. She walks with a cane. Her bled was on her left side so her right side is weak. She walks with a cane. She had to learn how to talk again but she can talk and she can talk quite well. She can do lots of things including being a great cook, her partner says. She is a lovely, upbeat person who clearly wants to be alive and enjoys it. She has been going to the stroke club in Truro for seven years, and speaks highly of the support she gets there. This is the same club that Harold talked to me about.
I want desperately to look back at this time in our lives and think of it as the ‘Year of the Stroke’ and the beginning of the rest of your life. I want to see an outcome like the many people that I have got to know about who had major brain injuries – Hollis, Harold, Carolyn, Marc and many others. This is such a tough time – I would give anything to know the last chapter – to know there is a happy ending.
I want to think positive but that crystal ball in my head is screwing me up – My mind flashes to frightening scenes that make me think that this is the year that you started to die – not the year you choose to live.
I have decided that I will keep pictures of all the brain injury people I know in my mind. Happy, smiling people enjoying life and finding beauty and understanding in each day. These pictures, for me, will be part of the last chapter of this journey.
I visited you after work, Laura and David are with you. You are putting on a weary sense of humour. After they leave, I asked how your day was. You told me about a good visit with Marianne. You say, “Today was good, better then yesterday – not as depressing.”
When I pick up Tara and Quinn at gymnastics, Tara was doing her homework – regular homework and extra homework! She loves school. She was busy writing a journal about herself. It was four pages long so far. The last two pages were about you and your stroke.
I asked her how the newt did at school. “Did he get homework too?” I asked with a smile. “No, he died. We buried him at lunchtime.” She replied solemnly.
It’s clear to me that Tara has it figured out. She is going to save whom she can. She couldn’t save the newt – but she is going to do her best to save you. I need to follow her lead. I need to do what I can for our family but stop trying to do it all.
Terry visited you today. She wrote:
Hi Gwen, I saw Chris this afternoon around 12:30 ish. I got dressed in robes and gloves and slippers until they finish ruling out Mr. Sa, and he knew me right away. He looks great, sounds great and had a sip of Coke without too much of a problem while I was there. He was upset about the fact that he won't be ready to take someone's place if needed in the Relay next year but I assured him that there will be a lot of back up people running for him and to not worry about that. He seems close to the surface about this and maybe this is normal or maybe he is just having an emotional day. But he was happy to see me and I him (I left the floor with my booties on I was so happy to see him). He said he looks forward to seeing me and Chris again as soon as my Chris gets over his cold/cough whatever the high school is circulating this week. Talk soon, Terry
While walking to work – I thought about the chickens. I’m worried that I’m going to forget them one day and they will get sick and suffer. I think I have to start to choose what I can do and what I can’t. I know that I can’t continue to do it all – there is just not enough time in the day to do it all.
I have been feeling overwhelmed all weekend. I think it came to a peak with the knowledge that you were started on gabapentin. I foolishly did some research on gabapentin and thalamic pain. The possible diagnosis scares me. Your thalamic pain now can translate into chronic pain later … life long chronic pain that can cause depression and worse. This thought really scares me.
Dr Graham carefully told me that this was the first of many things that can be done. But common sense tells me that if thalamic pain was easy to treat, then there wouldn’t be a lot of ways to treat it because the first attempts at treatment would work. I sense that the thalamic pain is going to be a long, unpleasant journey … a huge ugly hill that winds it’s path so you never know just how much further the hill actually is.
I called Dr. Feltmate’s office this morning. I was put right through to her! (I’m not used to this treatment). I share with her some of my concerns and she addresses them with careful thought and kindness. I think we are on the same page in terms of how to help you the most. She says that you are not ready for rehab yet. That’s what we want to work on. She suggests that the urological workup be done in Truro. Yes! Since I never even met the urologist in Halifax, I have no particular interest in maintaining a relationship with him and his very efficient receptionist. A local consult is much better. Probably faster too. If we are to get rid of the urinary tract infections, timely is important.
We talk a little about depression that often comes with a brain injury. I express my concern that this possibility be addressed early on. Many of the drugs for depression take some time to reach their potential and some don’t work well – so there is a certain amount of trail and error with treatment in order to find the right drug(s) for you.
I don’t believe that you are depressed now. You are sad but not depressed. You are just starting to come to terms with the magnitude of the situation. You are still taking inventory of your losses. Dr. Feltmate feels it’s important that we identify depression before it interferes with your desire to work at getting better.
I like Dr. Feltmate’s approach – I will meet her tomorrow at the hospital.
Today, I met a lady at work, Carolyn, who had an aneurysm 12 years ago. She walks with a cane. Her bled was on her left side so her right side is weak. She walks with a cane. She had to learn how to talk again but she can talk and she can talk quite well. She can do lots of things including being a great cook, her partner says. She is a lovely, upbeat person who clearly wants to be alive and enjoys it. She has been going to the stroke club in Truro for seven years, and speaks highly of the support she gets there. This is the same club that Harold talked to me about.
I want desperately to look back at this time in our lives and think of it as the ‘Year of the Stroke’ and the beginning of the rest of your life. I want to see an outcome like the many people that I have got to know about who had major brain injuries – Hollis, Harold, Carolyn, Marc and many others. This is such a tough time – I would give anything to know the last chapter – to know there is a happy ending.
I want to think positive but that crystal ball in my head is screwing me up – My mind flashes to frightening scenes that make me think that this is the year that you started to die – not the year you choose to live.
I have decided that I will keep pictures of all the brain injury people I know in my mind. Happy, smiling people enjoying life and finding beauty and understanding in each day. These pictures, for me, will be part of the last chapter of this journey.
I visited you after work, Laura and David are with you. You are putting on a weary sense of humour. After they leave, I asked how your day was. You told me about a good visit with Marianne. You say, “Today was good, better then yesterday – not as depressing.”
When I pick up Tara and Quinn at gymnastics, Tara was doing her homework – regular homework and extra homework! She loves school. She was busy writing a journal about herself. It was four pages long so far. The last two pages were about you and your stroke.
I asked her how the newt did at school. “Did he get homework too?” I asked with a smile. “No, he died. We buried him at lunchtime.” She replied solemnly.
It’s clear to me that Tara has it figured out. She is going to save whom she can. She couldn’t save the newt – but she is going to do her best to save you. I need to follow her lead. I need to do what I can for our family but stop trying to do it all.
Terry visited you today. She wrote:
Hi Gwen, I saw Chris this afternoon around 12:30 ish. I got dressed in robes and gloves and slippers until they finish ruling out Mr. Sa, and he knew me right away. He looks great, sounds great and had a sip of Coke without too much of a problem while I was there. He was upset about the fact that he won't be ready to take someone's place if needed in the Relay next year but I assured him that there will be a lot of back up people running for him and to not worry about that. He seems close to the surface about this and maybe this is normal or maybe he is just having an emotional day. But he was happy to see me and I him (I left the floor with my booties on I was so happy to see him). He said he looks forward to seeing me and Chris again as soon as my Chris gets over his cold/cough whatever the high school is circulating this week. Talk soon, Terry
Sunday November 1 – Juggling and Running Don’t Mix
If Grief results in Anger, Denial, Bargaining, Depression and Acceptance.
Then:
I think that in some ways, I am still in denial. There times when I feel, at the moment, that I am doing all right and actually think that I’m on top of things. Then, usually, something happens that brings down the illusion that I’ve created for myself and I get a glimpse of what’s really in store for us. It scares me.
I think that I function in denial because I’m scared of the truth.
I can’t entertain acceptance yet. I don’t know what to accept. There are so many possible recovery outcomes. I fear that if I accept any one of them too soon, I will impede your recovery to a new level.
So I’m stuck in denial and denial is exhausting.
This morning Tara and Quinn took part in the tradition that all siblings of similar ages do – the November 1 Annual Candy Exchange. Deals are made and recalculated and at the end – if all goes well – each sibling walks away snuggly thinking they got the better deal for their candy.
This event is followed, in our household, by the great candy organizing or as Tara says organ sizing. The family room floor was covered in candy. Carefully arranged in neat piles sorted by types and taste value. Annie anxiously watched from the sidelines … drooling – thinking of what deal she would do to get some of the loot.
While the children did this – I did boring things like change beds and laundry. I noticed that sometime in the past few days, Quinn had erased the picture of you from his worried board. This is the picture with you laying down with X’s on your eyes and Tara and Quinn standing by your gravestone. I don’t know when he erased it. We talked about it before and had settled on the deal that he could erase it when he felt he didn’t worry about it any more.
I remarked to him how I was happy to see that his worry board was clear. Either he was too wrapped up in the candy exchange or he chooses not to acknowledge me.
I called a friend, Ainsley, who works as a physiotherapist with the hospital. I wanted to try to get some information about your stay in Truro. I needed to know what your move meant for your recovery.
Ainsley was full of information and very reassuring. She mentioned several times to think of the move to Truro as a ‘glass half full’ move. A smaller care centre can still be well equipped and staffed to treat your type of problem. She said that, Kirsten, your physiotherapist here, gives 190% to her patients. She has good experience with stroke patients and know what you will need to get you into rehab. Kirsten will see you on Tuesday.
She said that Pictou does do brain injury rehab but would not likely be able to give it to the extent that the Halifax hospital would offer. It seems that, often, patients from Truro are sent to Pictou. This would be something we should discuss with Kirsten.
I have the feeling that this is a new phase of your recovery – we will embrace it and move on.
As we get to your room, we meet Dr. Graham leaving it. He is looking after you this weekend. A kind man with a soft approach. He tells me how he sees things now. You are not ready for rehab yet. Your stay here is to get you ready for the next level of recovery … rehab. I ask him about the MRI results. I don’t think he knows the results yet.
I ask him about a new drug that you were put on – gabapentin. I think you might have been started on it since the MRI … possibly in response to the MRI. This is a drug that helps with pain that comes from mixed up wiring in the brain. Thalamic pain. Your male nurse, Ryan, from last Tuesday, talked about his experience treating thalamic pain.
Dr Graham describes gabapentin as a first line drug for this condition. It is started at one dose level and increased and if poor response then other drugs are considered. It can be a long process to get control.
You asked the children about the Halloween hoard that they got. Tara tells about the bag left over from last year and, as I predicted, you said that it should be thrown out.
We talk about friends and Donald’s name comes up. You are worried about Donald – not getting visits. “Erin (Donald’s daughter) is coming back to Canada soon – Don’t worry - she’ll be there for him.”
While talking with the children, you are sure Tara has a pain in her left hand. You stretch out your right hand to comfort her left. I ask you “Are you sure it’s not your left hand?” “No, Tara’s hand is sore. There is a pain here.” You gesture to the palm of her hand. She assures you that she doesn’t have a pain.
Over the last few weeks you seem overly concerned about pains that other people might have. It seems that you are the only one who actually acknowledges the pain. I wonder if is how thalamic pain can manifest itself. It’s a real pain that the patient perceives but is unable to fully describe and locate. A pain that is chemically started in your thalmus may seem like it is someone else’s pain. It’s like an over active empathetic pain.
Laura, fellow runner and a member of the church visits. Laura tells the news of the church and some stories from the running events that she has been to. You talk about other runners and you tell Laura that your brother, Steve and his wife, Laura, will run in the Cabot trail next spring. You remembered this from last week!
Fellow runner and church - goer Laura said that she signed up also for the Tidal boars team in the Cabot trail Relay.
Just as we are leaving, Marty, from the church, comes to visit. You are happy to see Marty. As we leave, you catch-up on the going-ons at the church with Marty.
The children and I head to Juanita’s for dinner. We get there an hour early … we went off daylight savings time and I didn’t know it! Oh man – My head screams at me – an extra hour – I had an extra hour to do stuff – and I didn’t even realize it – and now the hour is lost. I end up having another melt down at Juanita’s – I’m feeling over whelmed again.
I just wanted to get some things done about the house – get some things finished and try to gain a little control on my life. Normally, I have a hard time not finishing something – yet that is the constant state of affairs for now. I have so many balls in the air. I could have gotten so much done in an hour. I could have got a little control. Now the time is lost. I feel balls dropping again. Running this marathon with you is not easy with juggling so many balls.
Then:
I think that in some ways, I am still in denial. There times when I feel, at the moment, that I am doing all right and actually think that I’m on top of things. Then, usually, something happens that brings down the illusion that I’ve created for myself and I get a glimpse of what’s really in store for us. It scares me.
I think that I function in denial because I’m scared of the truth.
I can’t entertain acceptance yet. I don’t know what to accept. There are so many possible recovery outcomes. I fear that if I accept any one of them too soon, I will impede your recovery to a new level.
So I’m stuck in denial and denial is exhausting.
This morning Tara and Quinn took part in the tradition that all siblings of similar ages do – the November 1 Annual Candy Exchange. Deals are made and recalculated and at the end – if all goes well – each sibling walks away snuggly thinking they got the better deal for their candy.
This event is followed, in our household, by the great candy organizing or as Tara says organ sizing. The family room floor was covered in candy. Carefully arranged in neat piles sorted by types and taste value. Annie anxiously watched from the sidelines … drooling – thinking of what deal she would do to get some of the loot.
While the children did this – I did boring things like change beds and laundry. I noticed that sometime in the past few days, Quinn had erased the picture of you from his worried board. This is the picture with you laying down with X’s on your eyes and Tara and Quinn standing by your gravestone. I don’t know when he erased it. We talked about it before and had settled on the deal that he could erase it when he felt he didn’t worry about it any more.
I remarked to him how I was happy to see that his worry board was clear. Either he was too wrapped up in the candy exchange or he chooses not to acknowledge me.
I called a friend, Ainsley, who works as a physiotherapist with the hospital. I wanted to try to get some information about your stay in Truro. I needed to know what your move meant for your recovery.
Ainsley was full of information and very reassuring. She mentioned several times to think of the move to Truro as a ‘glass half full’ move. A smaller care centre can still be well equipped and staffed to treat your type of problem. She said that, Kirsten, your physiotherapist here, gives 190% to her patients. She has good experience with stroke patients and know what you will need to get you into rehab. Kirsten will see you on Tuesday.
She said that Pictou does do brain injury rehab but would not likely be able to give it to the extent that the Halifax hospital would offer. It seems that, often, patients from Truro are sent to Pictou. This would be something we should discuss with Kirsten.
I have the feeling that this is a new phase of your recovery – we will embrace it and move on.
As we get to your room, we meet Dr. Graham leaving it. He is looking after you this weekend. A kind man with a soft approach. He tells me how he sees things now. You are not ready for rehab yet. Your stay here is to get you ready for the next level of recovery … rehab. I ask him about the MRI results. I don’t think he knows the results yet.
I ask him about a new drug that you were put on – gabapentin. I think you might have been started on it since the MRI … possibly in response to the MRI. This is a drug that helps with pain that comes from mixed up wiring in the brain. Thalamic pain. Your male nurse, Ryan, from last Tuesday, talked about his experience treating thalamic pain.
Dr Graham describes gabapentin as a first line drug for this condition. It is started at one dose level and increased and if poor response then other drugs are considered. It can be a long process to get control.
You asked the children about the Halloween hoard that they got. Tara tells about the bag left over from last year and, as I predicted, you said that it should be thrown out.
We talk about friends and Donald’s name comes up. You are worried about Donald – not getting visits. “Erin (Donald’s daughter) is coming back to Canada soon – Don’t worry - she’ll be there for him.”
While talking with the children, you are sure Tara has a pain in her left hand. You stretch out your right hand to comfort her left. I ask you “Are you sure it’s not your left hand?” “No, Tara’s hand is sore. There is a pain here.” You gesture to the palm of her hand. She assures you that she doesn’t have a pain.
Over the last few weeks you seem overly concerned about pains that other people might have. It seems that you are the only one who actually acknowledges the pain. I wonder if is how thalamic pain can manifest itself. It’s a real pain that the patient perceives but is unable to fully describe and locate. A pain that is chemically started in your thalmus may seem like it is someone else’s pain. It’s like an over active empathetic pain.
Laura, fellow runner and a member of the church visits. Laura tells the news of the church and some stories from the running events that she has been to. You talk about other runners and you tell Laura that your brother, Steve and his wife, Laura, will run in the Cabot trail next spring. You remembered this from last week!
Fellow runner and church - goer Laura said that she signed up also for the Tidal boars team in the Cabot trail Relay.
Just as we are leaving, Marty, from the church, comes to visit. You are happy to see Marty. As we leave, you catch-up on the going-ons at the church with Marty.
The children and I head to Juanita’s for dinner. We get there an hour early … we went off daylight savings time and I didn’t know it! Oh man – My head screams at me – an extra hour – I had an extra hour to do stuff – and I didn’t even realize it – and now the hour is lost. I end up having another melt down at Juanita’s – I’m feeling over whelmed again.
I just wanted to get some things done about the house – get some things finished and try to gain a little control on my life. Normally, I have a hard time not finishing something – yet that is the constant state of affairs for now. I have so many balls in the air. I could have gotten so much done in an hour. I could have got a little control. Now the time is lost. I feel balls dropping again. Running this marathon with you is not easy with juggling so many balls.
Sunday, November 1, 2009
Saturday October 31 – Sick of Thickener
I couldn’t sleep this morning – I went to bed very late last night and woke up far too early. As I lay awake in bed, I realize that I’m worried. The reason wasn’t obvious to me until this morning. I’m worry that we are in a new hospital. A new hospital with a new health care support net around us. Is this as good as the one at the QE2?
At the QE2, I had just got to the point of knowing every one and the role they play in your recovery. Now your team is new. Is it as comprehensive as the QE2’s team? It’s certainly not a rehab team. Being a regional hospital, the Colchester Hospital, does what regional hospitals do – Stabilize big problems, fix small problems and give on going therapy for long term problems. They don’t have the specialties that are offered at then QE2 and rehab.
I’m worried that you will be ‘stored’ there during a critical part of your recovery when rehab will have the biggest benefit. Is the window of opportunity for rehab a slowly opening and slowly closing window? Or is the opportunity for the maximal benefit very well defined and missing a chance to work on a neurological skill now means that skill may never be mastered later.
Knowing that stroke recovery can continue for 1 to 2 years, my hunch says that the window of opportunity is wide and we have time – but how much? And how long are you going to be in the Truro hospital? At present, I know nothing about the waiting list at the rehab hospital.
The area, where the damage is the worst, reflects your neurological losses. Like any healing tissue, it is organizing and scarring as I write about this. Does some of the recovery have to come from this area? Maybe the tangible recovery is solely dependent on other areas of the brain taking over. But if the scarring of the affected area too advanced, is the re-routing as effective.
Dr. Mendez said the part of the research for stem cell therapy is directed at the timing of stem cell therapy. There is a reason for this. If the scarring is advanced, can stem cells overcome the scarring and grow new pathways to re-establish old connections and still effect a difference? If this is a concern for stem cell therapy, then surely it’s a concern for rehab, which requires the brain to establish new ways to communicate within the brain using existing cells.
This is another case of knowing enough to worry but not knowing enough to not worry. I wish the move to Truro wasn’t sprung on me on at while working on a Friday afternoon. I didn’t have an opportunity to direct these concerns to your old QE2 team and get answers that I can accept.
If rehab is not in the near future, what can we do to maximize your recovery. I was thinking about the video called ‘Life Support Music’. Jason’s extended family took charge of his physio and he succeeded in having a lengthy but good recovery. Is this sort of undertaking within our reach?
The past few days, your emotional moments are starting to take you down a different path. In the past your emotional times were related to how others felt about you. It was an empathetic emotional response. When I read you the kind and healing words that people have written for you, you felt their pain. I don’t think you cried for your own loss yet. I don’t think you had really come to terms with your loss yet. The reality of the situation hadn’t cemented itself into your thoughts yet.
The last few days have been different – You have cried out suddenly, “I let you all down” and “I won’t be able the run again.” For the first time, I think you are sad for your self, for your loss. Your physical loss, your loss of time (almost 2 months), loss of some of your vision possibly and ultimately loss of your independence and your unique sense of self.
I think this is the time when you might need the rest of us the most. You need to hear our collective voice cheering for you as you run in this marathon of your life. This is the most important marathon of your life and you need support.
The move to Truro has a silver lining. The children and I can visit you every day more easily. The other benefit for me is that this gives me a small break to get things done at home. I have neglected the house – I’ve done the essential things but there are a number of little things that need to be done before winter. They are starting to mound up and I am starting to feel a little overwhelmed.
I get the kids up, help Tara finish her costume, nit pick Tara’s hair (apparently it’s still a work in progress!) and got the children off with Juanita to make pies at the Shubie United Church.
Just before I leave to visit you, Janice (from PEI) calls and tells me her interpretation of your transfer to Truro. She is also concerned that you are going to be 'stored' at the regional hospital. She said that she talked to someone on the floor of the neurosurgery floor and she said the waiting list is months long!
I wonder if this source actually knew what she was talking about – perhaps the ‘months’ comment was just the standard line that is given so not to raise people’s expectations.
I have to face it – there is no way to get good information until Monday when the physio people, both in Halifax and Truro, are available. I can also talk to Dr. Feltmate, your GP. Until Monday, I have to put all my negative feeling on hold – when I know more - I can make a better plan.
To visit you, the visitor has to put on gown booties and gloves and you must wash your hands after. The fear is the MRSA. We already had a scare with it in the step down intermediate care unit. The MRSA precaution is a pain in the butt. Every time the children or I want to go in the room or leave the room, we have to dress up or strip off all the gear. I expressed annoyance with the whole business. I said “I can’t wait for the MRSA test to come back.” You add “Yeah that was a tough test – I hoped I passed.”
Today, you are sad and overwhelmed. You are painful. The move has been stressful with a new place and new people. It’s like moving to a new school. You don’t know anyone but in time things will get better. There will be more visitors with you in Truro. This will be our opportunity to help you heal emotionally, before you start on the next part of the journey. We can be an important way to plant the positive messages you need to hear to heal.
You are getting sick of thickened liquids. Some poor nurse last night tried to satisfy your craving for water. You wanted cool liquid water that you can gulp down and feel it wash over your tongue, refresh your whole mouth and slide down your throat. She gave you thickened water! You are sick of the thickener.
You tell the children that you are going to fall in love with the first person who gives him a ‘thickenerless’ beverage.
You are wondering about the physio. “I want to walk again” I tell you that physio will help you to learn how to walk again. I can’t tell you much because I don’t know what to tell you. I try to pacify you with encouraging words. Between sobs you say “I want to run another marathon.” My heart aches for you.
Then you say you want to win a marathon. At first I took this in the literal sense. But after some reflection, I think you are talking about this hypothetical marathon. Although you have joked about it, I don’t think you ever thought that you could win a marathon. So it is more likely you were referring to the marathon of recovery.
I read another letter from Janice, You are happy and you want her to move in with us. In many ways I think Janice has been the sister you never had. She has been a source of strength for you while you went through a few tough times over the years.
It was time to catheterize you. As Lindsey places the catheter, you say, with a little weariness in your voice, “I guess I’m going to have to make love to the catheter lady again.” Lindsey took this comment in stride. As you empty your bladder, suddenly a fountain of urine flows out – pushing the catheter right out of the bladder! The best pee ever. Lindsey and I both smile at the situation. It’s a good sign.
We play with a glove that we blew up like a balloon. Glove balloon game lasted for a while. You would hit it with your right arm only
Mildred and Laurie visited. You are happy to see them. A dose of ‘Mildred enthusiasm’ is just what you need.
I drive the children to Juanita’s to get ready for Halloween tonight. I let you rest. You are worried that if I leave, I won’t come back. “I’ll be back, I’m not giving up on you now!” I tell you.
When I get back, you had slid down the bed and have your legs jammed between the bedrails. You were unable to reach the call button for the nurse. I can see that the MRSA is a challenge for the nurses too. Popping in to do a quick check on the patient is more difficult and probably not done as much.
The children had a good Halloween. They have far more candy then they know what to do with it. In previous years, there is always Halloween candy and Christmas parade candy and Easter candy left over. This is surprising to me especially since they both keep their candy in their rooms. That would have never happened in our childhoods.
Tomorrow when we visit, the children will bring some of the candy – which you can’t have so I’ll get you a 4X4 Tim Horton’s coffee… with a little thickener.
NOTE to the blog readers: If you live handy to Truro and are able to visit – please do. Visiting hours are 2-8 PM. Beware that there are sick people in the hospital. Please take the precautions as you enter the hospital so you can protect yourself and Chris from the HINI virus.
At the QE2, I had just got to the point of knowing every one and the role they play in your recovery. Now your team is new. Is it as comprehensive as the QE2’s team? It’s certainly not a rehab team. Being a regional hospital, the Colchester Hospital, does what regional hospitals do – Stabilize big problems, fix small problems and give on going therapy for long term problems. They don’t have the specialties that are offered at then QE2 and rehab.
I’m worried that you will be ‘stored’ there during a critical part of your recovery when rehab will have the biggest benefit. Is the window of opportunity for rehab a slowly opening and slowly closing window? Or is the opportunity for the maximal benefit very well defined and missing a chance to work on a neurological skill now means that skill may never be mastered later.
Knowing that stroke recovery can continue for 1 to 2 years, my hunch says that the window of opportunity is wide and we have time – but how much? And how long are you going to be in the Truro hospital? At present, I know nothing about the waiting list at the rehab hospital.
The area, where the damage is the worst, reflects your neurological losses. Like any healing tissue, it is organizing and scarring as I write about this. Does some of the recovery have to come from this area? Maybe the tangible recovery is solely dependent on other areas of the brain taking over. But if the scarring of the affected area too advanced, is the re-routing as effective.
Dr. Mendez said the part of the research for stem cell therapy is directed at the timing of stem cell therapy. There is a reason for this. If the scarring is advanced, can stem cells overcome the scarring and grow new pathways to re-establish old connections and still effect a difference? If this is a concern for stem cell therapy, then surely it’s a concern for rehab, which requires the brain to establish new ways to communicate within the brain using existing cells.
This is another case of knowing enough to worry but not knowing enough to not worry. I wish the move to Truro wasn’t sprung on me on at while working on a Friday afternoon. I didn’t have an opportunity to direct these concerns to your old QE2 team and get answers that I can accept.
If rehab is not in the near future, what can we do to maximize your recovery. I was thinking about the video called ‘Life Support Music’. Jason’s extended family took charge of his physio and he succeeded in having a lengthy but good recovery. Is this sort of undertaking within our reach?
The past few days, your emotional moments are starting to take you down a different path. In the past your emotional times were related to how others felt about you. It was an empathetic emotional response. When I read you the kind and healing words that people have written for you, you felt their pain. I don’t think you cried for your own loss yet. I don’t think you had really come to terms with your loss yet. The reality of the situation hadn’t cemented itself into your thoughts yet.
The last few days have been different – You have cried out suddenly, “I let you all down” and “I won’t be able the run again.” For the first time, I think you are sad for your self, for your loss. Your physical loss, your loss of time (almost 2 months), loss of some of your vision possibly and ultimately loss of your independence and your unique sense of self.
I think this is the time when you might need the rest of us the most. You need to hear our collective voice cheering for you as you run in this marathon of your life. This is the most important marathon of your life and you need support.
The move to Truro has a silver lining. The children and I can visit you every day more easily. The other benefit for me is that this gives me a small break to get things done at home. I have neglected the house – I’ve done the essential things but there are a number of little things that need to be done before winter. They are starting to mound up and I am starting to feel a little overwhelmed.
I get the kids up, help Tara finish her costume, nit pick Tara’s hair (apparently it’s still a work in progress!) and got the children off with Juanita to make pies at the Shubie United Church.
Just before I leave to visit you, Janice (from PEI) calls and tells me her interpretation of your transfer to Truro. She is also concerned that you are going to be 'stored' at the regional hospital. She said that she talked to someone on the floor of the neurosurgery floor and she said the waiting list is months long!
I wonder if this source actually knew what she was talking about – perhaps the ‘months’ comment was just the standard line that is given so not to raise people’s expectations.
I have to face it – there is no way to get good information until Monday when the physio people, both in Halifax and Truro, are available. I can also talk to Dr. Feltmate, your GP. Until Monday, I have to put all my negative feeling on hold – when I know more - I can make a better plan.
To visit you, the visitor has to put on gown booties and gloves and you must wash your hands after. The fear is the MRSA. We already had a scare with it in the step down intermediate care unit. The MRSA precaution is a pain in the butt. Every time the children or I want to go in the room or leave the room, we have to dress up or strip off all the gear. I expressed annoyance with the whole business. I said “I can’t wait for the MRSA test to come back.” You add “Yeah that was a tough test – I hoped I passed.”
Today, you are sad and overwhelmed. You are painful. The move has been stressful with a new place and new people. It’s like moving to a new school. You don’t know anyone but in time things will get better. There will be more visitors with you in Truro. This will be our opportunity to help you heal emotionally, before you start on the next part of the journey. We can be an important way to plant the positive messages you need to hear to heal.
You are getting sick of thickened liquids. Some poor nurse last night tried to satisfy your craving for water. You wanted cool liquid water that you can gulp down and feel it wash over your tongue, refresh your whole mouth and slide down your throat. She gave you thickened water! You are sick of the thickener.
You tell the children that you are going to fall in love with the first person who gives him a ‘thickenerless’ beverage.
You are wondering about the physio. “I want to walk again” I tell you that physio will help you to learn how to walk again. I can’t tell you much because I don’t know what to tell you. I try to pacify you with encouraging words. Between sobs you say “I want to run another marathon.” My heart aches for you.
Then you say you want to win a marathon. At first I took this in the literal sense. But after some reflection, I think you are talking about this hypothetical marathon. Although you have joked about it, I don’t think you ever thought that you could win a marathon. So it is more likely you were referring to the marathon of recovery.
I read another letter from Janice, You are happy and you want her to move in with us. In many ways I think Janice has been the sister you never had. She has been a source of strength for you while you went through a few tough times over the years.
It was time to catheterize you. As Lindsey places the catheter, you say, with a little weariness in your voice, “I guess I’m going to have to make love to the catheter lady again.” Lindsey took this comment in stride. As you empty your bladder, suddenly a fountain of urine flows out – pushing the catheter right out of the bladder! The best pee ever. Lindsey and I both smile at the situation. It’s a good sign.
We play with a glove that we blew up like a balloon. Glove balloon game lasted for a while. You would hit it with your right arm only
Mildred and Laurie visited. You are happy to see them. A dose of ‘Mildred enthusiasm’ is just what you need.
I drive the children to Juanita’s to get ready for Halloween tonight. I let you rest. You are worried that if I leave, I won’t come back. “I’ll be back, I’m not giving up on you now!” I tell you.
When I get back, you had slid down the bed and have your legs jammed between the bedrails. You were unable to reach the call button for the nurse. I can see that the MRSA is a challenge for the nurses too. Popping in to do a quick check on the patient is more difficult and probably not done as much.
The children had a good Halloween. They have far more candy then they know what to do with it. In previous years, there is always Halloween candy and Christmas parade candy and Easter candy left over. This is surprising to me especially since they both keep their candy in their rooms. That would have never happened in our childhoods.
Tomorrow when we visit, the children will bring some of the candy – which you can’t have so I’ll get you a 4X4 Tim Horton’s coffee… with a little thickener.
NOTE to the blog readers: If you live handy to Truro and are able to visit – please do. Visiting hours are 2-8 PM. Beware that there are sick people in the hospital. Please take the precautions as you enter the hospital so you can protect yourself and Chris from the HINI virus.
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