You are in a sour mood still. You want to smoke and you don’t want to take your pills. You don’t want to go to church. You just want to die.
I understand that this mood is a result for your lack of ability to make choices, even simple choices. My instinct is to keep pushing the logic behind getting up and taking your medication. I go against my instincts and back off. I should know this by now. Logic has no place in an injured brain … especially a brain with a right-sided injury. I need to communicate with feelings because that is what you think with.
Last night, Tara made me acutely aware that your health and attitude are constant concerns for her. I try to get you to look at your health from the children’s prospective. Although you said that you felt like I was parenting you, it still worked. The next thing I know, you are letting me tame your beard into a manageable shape and pick out clothes for church.
As we load into the car, I almost forgot to pack the wheelchair. “Forget it” you said. “I’ll want to walk into the church.” I suggest parking close to the door to let you out and the park the car elsewhere. “Nope, park here on the street and I’ll walk.” You did it. You walked down the street at a slow but steady pace and into the church.
Your stubborn determination made it happen and made my spirits soar.
As we look for a spot to sit, you start talking to a congregation member. While you stand there talking, applause starts from the choir section and spreads quickly to the whole room ... you are too busy talking to acknowledge the applause. You are an inspiration to the congregation. A loved inspiration.
Tara and Quinn notice – their spirits soar too.
Transformation is the topic of today’s sermon. This, of course, can be viewed in many ways but it seems very fitting to you. A metaphor of swinging from trapeze bar to trapeze bar was made to explain how transformation is both scary but exhilarating. If you don’t take a risk, transformation will not happen.
You have a big transformation to make. Many trapeze bars and many risks but the results will be worth it.
After church you talk with many of the congregation. You tell them that they are your heros. Rod Carew may have been one of your first un-related heros, but he is not your only hero. We all need heros …Today, you were surrounded by them.
Most of your heros don’t realize it, but they have super human strength and they unselfishly share their strength with you. Going to the church today was an antidote to your desire for self-destruction. Being around people you love and who love you makes a big difference.
When we get home, Tara is overwhelmed with sadness. She is angry and tired (not much sleep last night) and hungry. You kick into Dad mode while I get some food ready. By the time I have lunch on the table, you, Daddy the super hero, shared your strength with her. She was better.
You feel that you were ‘reborn’ to experience new life lessons and learn how to be a more ‘productive’ person. You are starting to explore ideas of things you can do once you get home. Everyone needs a passion to fulfill. Woodworking was one of your outlets, before the stroke. You think that with a vise, you could still carve with you right hand.(With a vice you may crave instead)
You can’t see how you would be able to use the shop we built a year and a half ago. Right now it sits with tons of equipment haphazardly piled in the building. It was going to be a great shop with a little organization. We had tossed about ideas. Ideas like, letting my brother, Bill, use it if he moves home. Today, You thought that you could loan it out to people who need access to the large variety of equipment that you have. “Why not make it a community workshop for the causal wood worker?”
This afternoon, Tara had her first audition. It’s for a summer theatre musical. She is very excited about being involved in the production ‘Suessical’. She practiced her song several times for us. Each time, fine tuning her performance of ‘Take me out to the Ball Game’. She sounded good and confident. As she waited for her name to be called, she didn’t want us to be there to support her. “Let her show her independence.” Helen, the lady at the sign in desk said. Oh Boy that’s hard. She is our baby, I’m not ready for her independence yet.
Thank God, independence happens in stages. After being a brain washed parent for ten years, I’m not ready yet to give up the notion that my children will grow up and not need us so much.
There has been a lot of discussion about a tattoo this weekend. You want a tattoo. A tattoo on your left arm. You have tossed about various ideas but the one that has stuck is a unicorn. You want a unicorn with your time at the Boston Marathon last year, 3:22:45. “Why a unicorn?” I ask. “That’s the logo of the Boston Marathon.” is your simple reply.
I was a little disappointed, I was expecting something with a little deeper meaning. Something like, ‘because a unicorn is magical and only exists if you believe.’ That works for me because so much of your recovery hinges on the principle of belief. If you believe that good things will happen … then they will.
Next week, I promise we can look at getting a tattoo.
Wednesday, April 21, 2010
Saturday April 17 – I’m 49 going on 78
It was a tough day … all day. You had a long list of things that you wanted to do and I needed to get groceries. This conflict ended with a discussion about priorities and you sulked. You didn’t want to do anything except smoke.
Finally, we got everyone out the door. You visited Donald while the children and I got groceries. I had hope that a visit with him would catapult you back to the world of hope. A visit would give you another purpose … It didn’t. Donald wasn’t having a good day either. When we came to pick you up, you did manage to make me cry when you said good bye to Donald.
Today, Donald was in a little world in his own head. Although you talked, Donald’s deafness and his own turned in state made communication difficult. Donald’s 90 years have started to take their toll. When you were ready to leave, you reached out and massaged his elbow. You said, “I love you.” Just like a son would to his father. Donald made a noise. I think he did hear you. I don’t know what he said but I’ll guess it was I love you too ... just like a father would to his son.
This morning Quinn and I were cuddling and Quinn started the ‘I’m Lucky’ game. I wonder if one of the more spiritual reason that adults are suppose to have children so that they can be reminded about the great and simple games that you can play with them.
The ‘I’m Lucky’ game is different from the ‘I love you’ game. In the game, you try to think of as many reasons as possible why you are lucky. This game started because we successfully arranged two playdates, one with one of Quinn’s friends from school. Connery and the other is a playdate with Erin, Tara’s friend. “Tara is lucky that Erin is coming over!” He said. I point out “You got Connery to come over … that’s pretty lucky.” Not to be outdone, he says “I’m lucky to have a Mum.” I squeeze him. “I have a Quinn.” Rising to the occasion, Quinn counters with “I’m lucky to have a Dad and a sister.”
We forget how very lucky we are.
Quinn is a hugger. He is the best kind of hugger … a random hugger. His hugs are good and strong and he even does the back pat for added effect. His timing is always good. I think he gets that from you. It links into the timing you use to deliver an especially funny line. Hugs and humour must well timed to have the best impact. Today, Quinn merged to two talents.
Just when you and I were at a rough spot this morning about what we were going to do, Quinn skips into the room and reaches out to give me a hug. I think, as I connect with his arms …’What a great kid’. What I didn’t know was that he had the little buzzer wound up and concealed in his hand. As we embrace I get the shock of the buzzer going off on my back … I jump up and scream. He giggles and the tense moment between you and I lightens for a bit.
You still wanted to smoke. You had your backpack with the cigarettes in hand. The screen door was open and you could have gotten out. That’s when Quinn hugged you. The feeling past. Timing and the touch of a son are powerful things.
For a brief time you had a period of being good. Hollis came to visit you and the two of you talk while I skipped out to the animal hospital to get some papers. Hollis’ visit was very therapeutic. After Hollis left, you felt good. We talked like the old times.
You seemed safely on firm ground and ready not to falter. I remind you what I had seen earlier in the day with Quinn’s hug. You had a chance to get outside to smoke, but you didn’t. It’s almost like that you have two voices, one on each shoulder. Now the good guy is winning but the bad guy keeps trying to get you. “You have to stay strong.” I said.
Lately, you have talked a lot about redefining yourself. You explain to me that simnce you are born again and you will need to make fundamental choices about who you want to be. You feel that the legacy of the stroke has limited many of your choices. When you feel sad you are over whelmed by the sense of loss and when you feel good you are ready to take on new roles that are inspiring to many.
This is the good voice and the bad voice in your head. There is nothing wrong with your ability to process thoughts and re-organize them into an understandable concept.
Fran came to visit again from Newfoundland. She came to check on Mum and her progress from surgery. We have been very frustrated at not being able to call her because the phone system in her room is messed up. Thankfully, Juanita got to the Halifax Infirmary yesterday and discovered the problem but it’s still not fixed yet.
Fran got to our home late. The two of you had a little talk and we looked at pictures of you while you were in the Halifax Infirmary. You could hardly recognize yourself. I expect it’s a little shocking seeing yourself looking so broken.
Fran and I fall into a sister conversation and you interrupt with a request for a Tim Hortons run. “It’s 10pm, I don’t want to go to Tim’s now … it’s late and I’m tired.” I sighed. Fran declined to go for you too.
Tim’s Coffee and Boston cream doughnuts are becoming your new addiction. Within minutes of rejecting your suggestion, you get quiet. As suddenly as the good mood came … it went.
A dark cloud came over you again. You circle back quickly to your depressed state. You want to get to bed. You refused your medicines. You want to suffer without them. I plead with you but you won’t take them. Regrettably, I got frustrated and angry. This was the first time I got angry at you since before your stroke. Yet it wasn’t enough to vent to you about you. Minutes later, I turned on Tara. She didn’t want to sleep in the bunk bed. A minor thing but it seemed big at the time. Tara and I exchanged words and she tried to cry herself to sleep.
I couldn’t bear to hear her sobbing and went to her bed. We made a compromise. She needed to talk. She was worried about you not taking your medicine as well. We talked, we share and we cuddle for a while. In very little time, she fell asleep.
My vet class reunion coming up this summer. There were about 120 of us and many of them I haven’t seen for a long time. I emailed one of my classmates about your stroke and the word has spread and I have received messages of strength from voices that I haven’t heard in 25 years. I can’t imagine getting to the reunion this summer. However perhaps connecting with people from my youth when I thought anything was possible, would be a good thing.
Many of the messages mention the fact that we are all older. Getting old is a two-edge sword - it cuts both ways. We trade thinking anything is possible for wisdom. I used to think anything was possible. I used to think it until very recently. Suddenly now, I feel old and tired.
Today, I think I aged far more then a day ... maybe as much as 29 days. Great, at this rate, a year from now, I will be 78 years old … that’s if I actually live that long.
Finally, we got everyone out the door. You visited Donald while the children and I got groceries. I had hope that a visit with him would catapult you back to the world of hope. A visit would give you another purpose … It didn’t. Donald wasn’t having a good day either. When we came to pick you up, you did manage to make me cry when you said good bye to Donald.
Today, Donald was in a little world in his own head. Although you talked, Donald’s deafness and his own turned in state made communication difficult. Donald’s 90 years have started to take their toll. When you were ready to leave, you reached out and massaged his elbow. You said, “I love you.” Just like a son would to his father. Donald made a noise. I think he did hear you. I don’t know what he said but I’ll guess it was I love you too ... just like a father would to his son.
This morning Quinn and I were cuddling and Quinn started the ‘I’m Lucky’ game. I wonder if one of the more spiritual reason that adults are suppose to have children so that they can be reminded about the great and simple games that you can play with them.
The ‘I’m Lucky’ game is different from the ‘I love you’ game. In the game, you try to think of as many reasons as possible why you are lucky. This game started because we successfully arranged two playdates, one with one of Quinn’s friends from school. Connery and the other is a playdate with Erin, Tara’s friend. “Tara is lucky that Erin is coming over!” He said. I point out “You got Connery to come over … that’s pretty lucky.” Not to be outdone, he says “I’m lucky to have a Mum.” I squeeze him. “I have a Quinn.” Rising to the occasion, Quinn counters with “I’m lucky to have a Dad and a sister.”
We forget how very lucky we are.
Quinn is a hugger. He is the best kind of hugger … a random hugger. His hugs are good and strong and he even does the back pat for added effect. His timing is always good. I think he gets that from you. It links into the timing you use to deliver an especially funny line. Hugs and humour must well timed to have the best impact. Today, Quinn merged to two talents.
Just when you and I were at a rough spot this morning about what we were going to do, Quinn skips into the room and reaches out to give me a hug. I think, as I connect with his arms …’What a great kid’. What I didn’t know was that he had the little buzzer wound up and concealed in his hand. As we embrace I get the shock of the buzzer going off on my back … I jump up and scream. He giggles and the tense moment between you and I lightens for a bit.
You still wanted to smoke. You had your backpack with the cigarettes in hand. The screen door was open and you could have gotten out. That’s when Quinn hugged you. The feeling past. Timing and the touch of a son are powerful things.
For a brief time you had a period of being good. Hollis came to visit you and the two of you talk while I skipped out to the animal hospital to get some papers. Hollis’ visit was very therapeutic. After Hollis left, you felt good. We talked like the old times.
You seemed safely on firm ground and ready not to falter. I remind you what I had seen earlier in the day with Quinn’s hug. You had a chance to get outside to smoke, but you didn’t. It’s almost like that you have two voices, one on each shoulder. Now the good guy is winning but the bad guy keeps trying to get you. “You have to stay strong.” I said.
Lately, you have talked a lot about redefining yourself. You explain to me that simnce you are born again and you will need to make fundamental choices about who you want to be. You feel that the legacy of the stroke has limited many of your choices. When you feel sad you are over whelmed by the sense of loss and when you feel good you are ready to take on new roles that are inspiring to many.
This is the good voice and the bad voice in your head. There is nothing wrong with your ability to process thoughts and re-organize them into an understandable concept.
Fran came to visit again from Newfoundland. She came to check on Mum and her progress from surgery. We have been very frustrated at not being able to call her because the phone system in her room is messed up. Thankfully, Juanita got to the Halifax Infirmary yesterday and discovered the problem but it’s still not fixed yet.
Fran got to our home late. The two of you had a little talk and we looked at pictures of you while you were in the Halifax Infirmary. You could hardly recognize yourself. I expect it’s a little shocking seeing yourself looking so broken.
Fran and I fall into a sister conversation and you interrupt with a request for a Tim Hortons run. “It’s 10pm, I don’t want to go to Tim’s now … it’s late and I’m tired.” I sighed. Fran declined to go for you too.
Tim’s Coffee and Boston cream doughnuts are becoming your new addiction. Within minutes of rejecting your suggestion, you get quiet. As suddenly as the good mood came … it went.
A dark cloud came over you again. You circle back quickly to your depressed state. You want to get to bed. You refused your medicines. You want to suffer without them. I plead with you but you won’t take them. Regrettably, I got frustrated and angry. This was the first time I got angry at you since before your stroke. Yet it wasn’t enough to vent to you about you. Minutes later, I turned on Tara. She didn’t want to sleep in the bunk bed. A minor thing but it seemed big at the time. Tara and I exchanged words and she tried to cry herself to sleep.
I couldn’t bear to hear her sobbing and went to her bed. We made a compromise. She needed to talk. She was worried about you not taking your medicine as well. We talked, we share and we cuddle for a while. In very little time, she fell asleep.
My vet class reunion coming up this summer. There were about 120 of us and many of them I haven’t seen for a long time. I emailed one of my classmates about your stroke and the word has spread and I have received messages of strength from voices that I haven’t heard in 25 years. I can’t imagine getting to the reunion this summer. However perhaps connecting with people from my youth when I thought anything was possible, would be a good thing.
Many of the messages mention the fact that we are all older. Getting old is a two-edge sword - it cuts both ways. We trade thinking anything is possible for wisdom. I used to think anything was possible. I used to think it until very recently. Suddenly now, I feel old and tired.
Today, I think I aged far more then a day ... maybe as much as 29 days. Great, at this rate, a year from now, I will be 78 years old … that’s if I actually live that long.
Tuesday, April 20, 2010
Friday April 16 – Reinvent Being
As I drive to Halifax, I think. Every drive that I have done to or from Halifax without you or the children in the car… I think. I used to listen to the radio. I was a hard core CBC fan. I loved talk radio. Since your stroke, the white noise of the car allows me to keep my mind working on the things it needs to work on.
Today, I think about people and when a person becomes a patient. Not just a patient in the casual sense, but a consumer of intense medical therapy, like you. When a patient is always on the receiving end of care and is unable to give, it takes part of you away. You receive but you don’t give. Normal relationships do not exist in a hospital setting. This is something that you will have at home. Healthy two way relationships with people not only give to you but also receive from you. This is healthy and necessary to living.
Caring relationships go both ways. That is what gives us a purpose in life. Caring for others. It’s biologically programmed into us because we are mammals and we are a social species. To remove half the caring out of a relationship makes it an aberrant relationship … unhealthy and unrewarding. This is what you have experienced with a few exceptions in your hospital stay.
Objectively, I have tried to measure the time that you are depressed. My best guestimate is 40% depressed and 60% normal, although there is a lot of variation. I wonder what your measure will be like when you become surrounded with people who you can care for.
You said you need to redefine your roles and restore relationships with the people in your life. Reinventing yourself will help you climb of your dark hole. In time you and your community of family and friends will help you reinvent yourself. Perhaps that’s the difference between survive and thrive after a stroke or any life altering event. Survivors just get through the course. Thrivors reinvent themselves to get through their ordeal and in the process they not only inspire their own recovery, but they also inspire the people about them.
If this is the case, maybe I should call this part of your story: How My Town Healed My Family
Few years ago, I remember reading about a young woman who had a stroke. She was a young mother. She struggled with her recovery while being a mother to her pre-stroke children and her post-stroke children. She thrived because she had a strong sense of what her role was. She was needed. She knew that she needed to care for the most important lives in the world … her children. I thought, at the time, that it was interesting that a simple and strong biologic instinct of motherhood trumps the damage that a stroke can inflict. Motherhood gave her a reason to make a recovery.
Does the same work for fatherhood … I think so.
We had talked the other day about the reinvention and whether it is a ‘do over’. I expect it is in a small way but it’s actually better then that. It’s a do over with the benefit of hindsight. Life experiences are part of the fabric of your being – who are now isn’t who you were yesterday or on August 30. The advantage of re-invention is that you get to cherry pick the best roles and gifts.
You can get all cherries and no pits – what a great deal. It’s almost enviable to have this gift. Most people would love to have a do-over and yet still have the wisdom of their past experiences. Many would want it but they are not willing to part with the comfort of what they know so they choose to continue without emotional and spiritual growth. With you this was not a conscious decision, it was made for you, and your world was torn away from you. Now you get to decide what you are going to take back and what you are going to leave.
In a small way, this apples to me too. I have had some layers torn away from me. Now I get to decide how I am going to be after this stroke. Before the stroke – I had a lost sense of being – I knew my roles; mother, wife, daughter, sister and friend. But I had lost sight of what life is about. I thought that life was about doing. It’s not. I have learned rather slowly that life is about being. I had forgot how to be. How to be human. A human being … and part of a larger biologic being … the human race.
When I get to the hospital, you and your psychologist are deep in discussion. At the end she highlights some of the more general advise. “Exercise and good nutrition are very important, they help clear your head of toxins that impair your thinking.” She said and then adds, “Cigarettes are not going to help you.”
On the car ride home, you start the ‘I want to smoke’ rant – I shut you down. The car ride home was quiet … you sulked. It was a very long ride home.
In the past few months, I have noticed that the e physical barriers you have identified that have stopped you from smoking have been very convenient. At the same time, I hope that you don’t see all physical barriers as insurmountable. That would certainly derail your recovery.
Tonight, Terry and Chris G came over. You shared some guy time with Chris and Quinn. The three of you tried to watch baseball. The Angels vs the Bluejays. You had a lot of difficulty following the game. It’s strange. You know the rules. You know the strategies. You just can’t enjoy the game like you used to. Maybe it’s a concentration problem. Maybe there is more to it.
You will have a lot of physical barriers to over come. The trick is finding the right motivation to overcome them. If necessity is the mother of invention then frustration must be the mother of motivation.
I pray that the desire to smoke will not be as strong as the desire to relearn baseball or effect a good recovery.
Today, I think about people and when a person becomes a patient. Not just a patient in the casual sense, but a consumer of intense medical therapy, like you. When a patient is always on the receiving end of care and is unable to give, it takes part of you away. You receive but you don’t give. Normal relationships do not exist in a hospital setting. This is something that you will have at home. Healthy two way relationships with people not only give to you but also receive from you. This is healthy and necessary to living.
Caring relationships go both ways. That is what gives us a purpose in life. Caring for others. It’s biologically programmed into us because we are mammals and we are a social species. To remove half the caring out of a relationship makes it an aberrant relationship … unhealthy and unrewarding. This is what you have experienced with a few exceptions in your hospital stay.
Objectively, I have tried to measure the time that you are depressed. My best guestimate is 40% depressed and 60% normal, although there is a lot of variation. I wonder what your measure will be like when you become surrounded with people who you can care for.
You said you need to redefine your roles and restore relationships with the people in your life. Reinventing yourself will help you climb of your dark hole. In time you and your community of family and friends will help you reinvent yourself. Perhaps that’s the difference between survive and thrive after a stroke or any life altering event. Survivors just get through the course. Thrivors reinvent themselves to get through their ordeal and in the process they not only inspire their own recovery, but they also inspire the people about them.
If this is the case, maybe I should call this part of your story: How My Town Healed My Family
Few years ago, I remember reading about a young woman who had a stroke. She was a young mother. She struggled with her recovery while being a mother to her pre-stroke children and her post-stroke children. She thrived because she had a strong sense of what her role was. She was needed. She knew that she needed to care for the most important lives in the world … her children. I thought, at the time, that it was interesting that a simple and strong biologic instinct of motherhood trumps the damage that a stroke can inflict. Motherhood gave her a reason to make a recovery.
Does the same work for fatherhood … I think so.
We had talked the other day about the reinvention and whether it is a ‘do over’. I expect it is in a small way but it’s actually better then that. It’s a do over with the benefit of hindsight. Life experiences are part of the fabric of your being – who are now isn’t who you were yesterday or on August 30. The advantage of re-invention is that you get to cherry pick the best roles and gifts.
You can get all cherries and no pits – what a great deal. It’s almost enviable to have this gift. Most people would love to have a do-over and yet still have the wisdom of their past experiences. Many would want it but they are not willing to part with the comfort of what they know so they choose to continue without emotional and spiritual growth. With you this was not a conscious decision, it was made for you, and your world was torn away from you. Now you get to decide what you are going to take back and what you are going to leave.
In a small way, this apples to me too. I have had some layers torn away from me. Now I get to decide how I am going to be after this stroke. Before the stroke – I had a lost sense of being – I knew my roles; mother, wife, daughter, sister and friend. But I had lost sight of what life is about. I thought that life was about doing. It’s not. I have learned rather slowly that life is about being. I had forgot how to be. How to be human. A human being … and part of a larger biologic being … the human race.
When I get to the hospital, you and your psychologist are deep in discussion. At the end she highlights some of the more general advise. “Exercise and good nutrition are very important, they help clear your head of toxins that impair your thinking.” She said and then adds, “Cigarettes are not going to help you.”
On the car ride home, you start the ‘I want to smoke’ rant – I shut you down. The car ride home was quiet … you sulked. It was a very long ride home.
In the past few months, I have noticed that the e physical barriers you have identified that have stopped you from smoking have been very convenient. At the same time, I hope that you don’t see all physical barriers as insurmountable. That would certainly derail your recovery.
Tonight, Terry and Chris G came over. You shared some guy time with Chris and Quinn. The three of you tried to watch baseball. The Angels vs the Bluejays. You had a lot of difficulty following the game. It’s strange. You know the rules. You know the strategies. You just can’t enjoy the game like you used to. Maybe it’s a concentration problem. Maybe there is more to it.
You will have a lot of physical barriers to over come. The trick is finding the right motivation to overcome them. If necessity is the mother of invention then frustration must be the mother of motivation.
I pray that the desire to smoke will not be as strong as the desire to relearn baseball or effect a good recovery.
Monday, April 19, 2010
Thursday April 15 – Timing is Everything
After music practice with Chella, Tara asks me why I look tired. I was called twice in the night with animal emergencies. I am tired today. I look tired and I feel tired. I told her that I needed some sleep to allow me to continue this pace.
She noted a similarity with what she and Chella were just talking about. Breathe control. “I see, timing is everything.” She said knowingly, “Sleep must be well timed, just like a breath when you sing. Good well-timed breaths make song beautiful. Well-timed sleep makes your day go better.”
How do kids figure this stuff out? It took me years to know that and I could never have said it so poetically.
Tonight you expressed a need to reinvent yourself. You feel that you are born again in many ways. As a result, you want to give away some of your ‘old left over you’. Since you didn’t get to give away your organs, you want to give away materialistic things. Things that you felt defined you before your stroke. The cross, the golden 29 and the Notre Dame ring were all part of you but now you want to share with people who you have grown to love and respect.
You found a good home for the cross and the golden 29 that lived on your chain during your recovery. Now you want to give your ring away. You had designed and had this ring made. It has engraved on the inside your favorite line from the ‘If’ poem. ‘If you can fill the unforgiving minute with sixty seconds' worth of distance run…’ This ring has a lot of meaning to you and you want it to go to a special person … your OT (the new-old one).
You are doubtful that she will accept it. She operates on a very professional level and doesn’t want to confuse your thinking process by letting you get close. I understand this and so do you rationally with your left brain but your damaged right brain wants to give her something of the ‘old you’.
You wanted to know what I thought. I said that you should do what you think is right but I wanted you to understand that she may not accept it. You accepted my advise and you ‘wisely’ decided to keep the our wedding ring which you now put on your right ring finger and the St Christopher medal that I gave you many years ago. I guess your right brain isn’t that badly damaged.
I ask about the battle of smoking. No smoke yet – but the urge is there. “Maybe this weekend.” You say … I’m onto you now. I think you say that so I will pay attention to you. That’s OK – bring it on, I’m ready. As Tara said “timing is everything.”
She noted a similarity with what she and Chella were just talking about. Breathe control. “I see, timing is everything.” She said knowingly, “Sleep must be well timed, just like a breath when you sing. Good well-timed breaths make song beautiful. Well-timed sleep makes your day go better.”
How do kids figure this stuff out? It took me years to know that and I could never have said it so poetically.
Tonight you expressed a need to reinvent yourself. You feel that you are born again in many ways. As a result, you want to give away some of your ‘old left over you’. Since you didn’t get to give away your organs, you want to give away materialistic things. Things that you felt defined you before your stroke. The cross, the golden 29 and the Notre Dame ring were all part of you but now you want to share with people who you have grown to love and respect.
You found a good home for the cross and the golden 29 that lived on your chain during your recovery. Now you want to give your ring away. You had designed and had this ring made. It has engraved on the inside your favorite line from the ‘If’ poem. ‘If you can fill the unforgiving minute with sixty seconds' worth of distance run…’ This ring has a lot of meaning to you and you want it to go to a special person … your OT (the new-old one).
You are doubtful that she will accept it. She operates on a very professional level and doesn’t want to confuse your thinking process by letting you get close. I understand this and so do you rationally with your left brain but your damaged right brain wants to give her something of the ‘old you’.
You wanted to know what I thought. I said that you should do what you think is right but I wanted you to understand that she may not accept it. You accepted my advise and you ‘wisely’ decided to keep the our wedding ring which you now put on your right ring finger and the St Christopher medal that I gave you many years ago. I guess your right brain isn’t that badly damaged.
I ask about the battle of smoking. No smoke yet – but the urge is there. “Maybe this weekend.” You say … I’m onto you now. I think you say that so I will pay attention to you. That’s OK – bring it on, I’m ready. As Tara said “timing is everything.”
Saturday, April 17, 2010
Wednesday April 14 – Sharing your Losses
You called me twice today. These are the first long distance phone calls you made. You are starting to get some of your resourcefulness back. You had another good day. You said that you scouted out a smoking place outside but you got stuck and had to get someone to get back to the hospital so you didn’t try to smoke.
Another day. Another finishline.
You told me of a gentleman you met on the floor who has no legs and no memory. He can talk and he has his arms. He doesn’t know who he is. Amnesia is something you hear about in soap operas but rarely in real life. I try to imagine no memories. How difficult it would be for the person and for the family.
I remember, there was a time, I worried that you would have no memories or significant gaps in memory. You don’t. Your long-term memory is as good as the day before your stroke … better then average. Your short-term memory is a little reduced but now you are simply a member of the population’s norm.
To loose one’s memory would be like loosing yourself.
The two of you had a good talk about the bad feelings that constantly circle you. I think that talking about your losses with someone who has experience significant but different losses from you allows you to appreciate a little what you do still have … which is plenty
Another day. Another finishline.
You told me of a gentleman you met on the floor who has no legs and no memory. He can talk and he has his arms. He doesn’t know who he is. Amnesia is something you hear about in soap operas but rarely in real life. I try to imagine no memories. How difficult it would be for the person and for the family.
I remember, there was a time, I worried that you would have no memories or significant gaps in memory. You don’t. Your long-term memory is as good as the day before your stroke … better then average. Your short-term memory is a little reduced but now you are simply a member of the population’s norm.
To loose one’s memory would be like loosing yourself.
The two of you had a good talk about the bad feelings that constantly circle you. I think that talking about your losses with someone who has experience significant but different losses from you allows you to appreciate a little what you do still have … which is plenty
Tuesday April 13 - Actions Speak Louder Then Words
You had a good day today you said. “Did you smoke?” I ask. “Is that all you care about?” You enquire. “No” I said. “But it’s a measure of your day that is important to me.” You came close but you didn’t. You had your coat and lighter and cigarettes and even breath fresheners ready to go but you didn’t smoke.
Actions speak louder then words. Another day under your belt. Day 91 since your confession about smoking and day 226 since you were forced to stop smoking.
I talked to Harold about the Stroke Club. The fund raising went well last weekend. The members were pleased to see you at the ‘Walk and Roll’. When I told you this, you said if they were impressed then they will get see more because you are not finished.
You want to make a difference in your life and in the lives of others. This is part of your ‘Pay it Forward’.
All evening Quinn and Tara have been working on their rooms, tiding them up so that you can walk in them and get to their beds easily. Quinn even rearranged the furniture so that you can get to his bed easier. He wants you to be able to lay in bed and read with him.
Actions speak louder then words. Another day under your belt. Day 91 since your confession about smoking and day 226 since you were forced to stop smoking.
I talked to Harold about the Stroke Club. The fund raising went well last weekend. The members were pleased to see you at the ‘Walk and Roll’. When I told you this, you said if they were impressed then they will get see more because you are not finished.
You want to make a difference in your life and in the lives of others. This is part of your ‘Pay it Forward’.
All evening Quinn and Tara have been working on their rooms, tiding them up so that you can walk in them and get to their beds easily. Quinn even rearranged the furniture so that you can get to his bed easier. He wants you to be able to lay in bed and read with him.
Friday, April 16, 2010
Monday April 12 – Entitled to Anger
It’s back to the rehab again. This is the second to last trip to Halifax.
You are excited about next week. It’s the Boston Marathon next Monday. You’ve already invited friends to share the experience with on April 19th. You want to track runners in the race virtually via the internet. You want see who you know that’s running in the race from Nova Scotia so that you can follow them though the race course. I expect this will be like reliving the 2009 Boston Marathon.
The Boston Marathon talk gives way to a Cabot Trail Relay (CTR) discussion. You are going for the weekend. We are all going. You want to follow your team-mates through the whole course. This would amount to a full 24 hours of being awake. I think I might have to be the voice of reason and try to get you to be a little less involved.
You are not ready to hear my voice of reason. You love the CTR and nothing is going to stop you from living the experience as fully as possible. I hope to be with you for part of the race, but the children want to visit their friends and Annie wants to see her doggy family, so most of the weekend you will be in the team’s care. I know you will be in good hands. I suspect Martha, a nurse and your best friend, will be my voice of reason by proxy. She has a lot more diplomacy then I do. You might listen to her.
You have a special surprise for the runners of your team that you are working on which has to remain a secret until then. Chris G suggested that you finish 17th leg of the CTR. He thinks that the team could get special permission to wheel you or have you walk the last little bit of the race. “Oh no, I couldn’t do that. That’s the glory leg … the last leg. It belongs to Edwin. He has earned it. He could do the top ten, for sure … maybe even the top five!”
As always, you are thinking about the joy of running not about yourself.
Then the conversation circles back to smoking again. I don’t know how many approaches I can take to dissuade you from smoking. As we talk, it occurs to me that you are literally, on the edge. You are constantly looking for something to be an excuse to smoke. “You didn’t call me this morning, the nurses are not nice, I got scolded again.” Yet you are also looking for a reason not to smoke. Up to this point, the reasons not to smoke have been about logistics. “I don’t have cigarettes, it’s too hard to get outside, I have to wait for someone to take me out, there is no lighter, these cigarettes are stale.”
I don’t have to give you barriers, you make your own barriers. I think there is a battle going on in your mind … to smoke or not to smoke. That is the question. At times you think that you could pull off a ‘mulligan’ with smoking. I am doubtful. I think you are too because you have also acknowledged that one cigarette leads to two, and two to three etc. To counter this you need a logistic barrier that is ‘out of your control’. It is like you are playing mind games with yourself … and me.
You think of the no-smoking challenge like a race. The problem with this metaphor is that the race never ends. Every day is a new challenge with a new finish line. You wish that, one day, you could just not need to think about not smoking.
It’s difficult for me to fully understand a smoking addiction. Three months ago, I didn’t even know that you smoked. I never heard you talk about smoking and I never saw you smoke. Hearing you obsess on the subject seems very odd.
We talk about how, in time, you will learn new ways to cope with the feelings that lead you the desire to smoke. The problem is that it is difficult to learn new things when you have a hurt brain especially when you are also struggling with other things. This was not a good time to stop smoking … you have a lot of stressors on your plate right now and smoking is a coping tool.
I remind you … although you have 225 days in now, you have only been a confessed smoker for 90 days. Change takes time.
Your favorite poem, ‘If’, has always brought you to tears. When I ask why, you said it was because of the line: ‘If you can fill the unforgiving minute with sixty seconds' worth of distance run. Yours is the Earth and everything that's in it, And - which is more - you'll be a Man my son!’
To you, the unforgiving minute represents your lost potential. You take the quote literally, Running is your way to compensate for the unforgiving minutes that you have lost. Without running, you feel less entitled, less of a man and less deserving of life on Earth.
“I don’t believe in God … I am angry at God. I have every right to question him. If he is real then he should have killed me back then.”
Without any prompting from me, you started to talk about how you think your role of father is going to grow. You see it the same way my psychologist sees it. Your father role will kick in slowly. It will not be something that you slip into right away. I’m pleased that you acknowledged this, because I see this already being the case.
It frustrates you when the children come to me with their problems and not you but you are gradually getting that back. It’s a practice thing. Most parents ease into the parenthood thing with newborns … stepping into the lives of a 10 and 8 (almost) year old is very difficult without causing some collateral damage.
Today, our family psychologist did more exploration about smoking and asked you about your feelings when you want to smoke. This has been a real sensitive spot between us. I try to be supportive and yet not enabling. That is a difficult compromise to achieve. I think that you don’t believe I have achieved it because, more then once, you said “I make you want to smoke”.
The psychologist thinks it would be wise for Tara to see a psychologist to help her understand the feelings that she has. Over the past few months, I have learned that understanding fosters acceptance of the feelings and this allows you to learn more about yourself.
I reflect on the last months, and sense a theme of anger. I’ve drifted in and out of anger for some time. Most of my anger is directed outwards to the hospital, and the people who try to help you and the system that supports them. Tara is entitled to her anger. You are entitled to yours … your anger with God.
It has been a yo-yo day and I have to leave for Truro when you are going on a down swing. Just as I was wondering how I was going to leave you in the emotional state that you were in … the chaplain (ironically) comes to visit you just as I leave. It really couldn’t be any more obvious, God isn’t punishing you, God is there to help at every turn … you just can’t see it right now.
On the drive home, I wonder why I am so tired. It’s the transitions. Transitions from nurturing mode to logistic mode. I have never been a person who can ‘change horses’ quickly. I have inertia and a momentum problem. The transition time is spent in the car. I try to decompress in the car so that I’m ready for my next shift in Truro.
The closer I get to Truro, the more tired I got. “I only have to do this for another two weeks.” I think aloud, trying to keep my eyes open. I finally limp into the driveway. I turn off the engine and tip the seat back and sleep … in the sunny car … in the driveway... for a full 45 minutes.
The sleep proved to restore me partially but not completely. To finish the job, I took Annie out for a walk. Then I was ready for the rest of the week ... Logistic mode.
You are excited about next week. It’s the Boston Marathon next Monday. You’ve already invited friends to share the experience with on April 19th. You want to track runners in the race virtually via the internet. You want see who you know that’s running in the race from Nova Scotia so that you can follow them though the race course. I expect this will be like reliving the 2009 Boston Marathon.
The Boston Marathon talk gives way to a Cabot Trail Relay (CTR) discussion. You are going for the weekend. We are all going. You want to follow your team-mates through the whole course. This would amount to a full 24 hours of being awake. I think I might have to be the voice of reason and try to get you to be a little less involved.
You are not ready to hear my voice of reason. You love the CTR and nothing is going to stop you from living the experience as fully as possible. I hope to be with you for part of the race, but the children want to visit their friends and Annie wants to see her doggy family, so most of the weekend you will be in the team’s care. I know you will be in good hands. I suspect Martha, a nurse and your best friend, will be my voice of reason by proxy. She has a lot more diplomacy then I do. You might listen to her.
You have a special surprise for the runners of your team that you are working on which has to remain a secret until then. Chris G suggested that you finish 17th leg of the CTR. He thinks that the team could get special permission to wheel you or have you walk the last little bit of the race. “Oh no, I couldn’t do that. That’s the glory leg … the last leg. It belongs to Edwin. He has earned it. He could do the top ten, for sure … maybe even the top five!”
As always, you are thinking about the joy of running not about yourself.
Then the conversation circles back to smoking again. I don’t know how many approaches I can take to dissuade you from smoking. As we talk, it occurs to me that you are literally, on the edge. You are constantly looking for something to be an excuse to smoke. “You didn’t call me this morning, the nurses are not nice, I got scolded again.” Yet you are also looking for a reason not to smoke. Up to this point, the reasons not to smoke have been about logistics. “I don’t have cigarettes, it’s too hard to get outside, I have to wait for someone to take me out, there is no lighter, these cigarettes are stale.”
I don’t have to give you barriers, you make your own barriers. I think there is a battle going on in your mind … to smoke or not to smoke. That is the question. At times you think that you could pull off a ‘mulligan’ with smoking. I am doubtful. I think you are too because you have also acknowledged that one cigarette leads to two, and two to three etc. To counter this you need a logistic barrier that is ‘out of your control’. It is like you are playing mind games with yourself … and me.
You think of the no-smoking challenge like a race. The problem with this metaphor is that the race never ends. Every day is a new challenge with a new finish line. You wish that, one day, you could just not need to think about not smoking.
It’s difficult for me to fully understand a smoking addiction. Three months ago, I didn’t even know that you smoked. I never heard you talk about smoking and I never saw you smoke. Hearing you obsess on the subject seems very odd.
We talk about how, in time, you will learn new ways to cope with the feelings that lead you the desire to smoke. The problem is that it is difficult to learn new things when you have a hurt brain especially when you are also struggling with other things. This was not a good time to stop smoking … you have a lot of stressors on your plate right now and smoking is a coping tool.
I remind you … although you have 225 days in now, you have only been a confessed smoker for 90 days. Change takes time.
Your favorite poem, ‘If’, has always brought you to tears. When I ask why, you said it was because of the line: ‘If you can fill the unforgiving minute with sixty seconds' worth of distance run. Yours is the Earth and everything that's in it, And - which is more - you'll be a Man my son!’
To you, the unforgiving minute represents your lost potential. You take the quote literally, Running is your way to compensate for the unforgiving minutes that you have lost. Without running, you feel less entitled, less of a man and less deserving of life on Earth.
“I don’t believe in God … I am angry at God. I have every right to question him. If he is real then he should have killed me back then.”
Without any prompting from me, you started to talk about how you think your role of father is going to grow. You see it the same way my psychologist sees it. Your father role will kick in slowly. It will not be something that you slip into right away. I’m pleased that you acknowledged this, because I see this already being the case.
It frustrates you when the children come to me with their problems and not you but you are gradually getting that back. It’s a practice thing. Most parents ease into the parenthood thing with newborns … stepping into the lives of a 10 and 8 (almost) year old is very difficult without causing some collateral damage.
Today, our family psychologist did more exploration about smoking and asked you about your feelings when you want to smoke. This has been a real sensitive spot between us. I try to be supportive and yet not enabling. That is a difficult compromise to achieve. I think that you don’t believe I have achieved it because, more then once, you said “I make you want to smoke”.
The psychologist thinks it would be wise for Tara to see a psychologist to help her understand the feelings that she has. Over the past few months, I have learned that understanding fosters acceptance of the feelings and this allows you to learn more about yourself.
I reflect on the last months, and sense a theme of anger. I’ve drifted in and out of anger for some time. Most of my anger is directed outwards to the hospital, and the people who try to help you and the system that supports them. Tara is entitled to her anger. You are entitled to yours … your anger with God.
It has been a yo-yo day and I have to leave for Truro when you are going on a down swing. Just as I was wondering how I was going to leave you in the emotional state that you were in … the chaplain (ironically) comes to visit you just as I leave. It really couldn’t be any more obvious, God isn’t punishing you, God is there to help at every turn … you just can’t see it right now.
On the drive home, I wonder why I am so tired. It’s the transitions. Transitions from nurturing mode to logistic mode. I have never been a person who can ‘change horses’ quickly. I have inertia and a momentum problem. The transition time is spent in the car. I try to decompress in the car so that I’m ready for my next shift in Truro.
The closer I get to Truro, the more tired I got. “I only have to do this for another two weeks.” I think aloud, trying to keep my eyes open. I finally limp into the driveway. I turn off the engine and tip the seat back and sleep … in the sunny car … in the driveway... for a full 45 minutes.
The sleep proved to restore me partially but not completely. To finish the job, I took Annie out for a walk. Then I was ready for the rest of the week ... Logistic mode.
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