Today you got a sort of booster seat for your right foot so that your left leg can swing forward easily. It’s built right into the sole of your Asaics running shoes, sort of like a lift but it doesn’t extend to your heel. It sits mostly under your toes. You can move much better with the lift. Your left leg swings a little more freely with each kick.
Tomorrow you come home. My first marathon is finishing. This journal has been a very therapeutic outlet in my life. I had vowed to make a daily entry while you were in the hospital. Tomorrow, you are home for good.
A new marathon begins. It will have a different course and I sense that it will be very challenging but in a different way. A different course with slightly different rules and the finish line is not within sight. I guess that it’s more of an ultra marathon. I feel more prepared to do this one now because your team of coaches will support me too in this race.
When you are here in our home, you will need me more then I will need the journal. I must concentrate on the day to day logistics of the day, your needs and the children needs. The demands of my time and energy will increase … I have to stay focused on the unmarked finishline.
I know, occasionally, I will need to vent to the journal. When I need to empty my head and heart, I will turn to the journal and write. In the meantime I will continue to make brief notes about our marathon experience. When you are well enough to help me write ‘the book’, we can use these notes to write our story together.
I am going to pledge to make a weekly entry about your continuing marathon and progress to date. Just as your ran for 4684 days and were committed running each day, I will make a commitment too … a commitment to write.
Tuesday, April 27, 2010
Thursday, April 22, 2010
Wednesday April 21 - We’ll Find Our Way
Yesterday, I received a resume already. It came to me through the grapevine at work. The lady comes highly recommended as a homecare helper for you. Tomorrow, I will be meeting with the homecare coordinator and the nurse manager who get the homecare started.
‘Helper’ isn’t the right word. The people who are going to be in your life as your ‘support help’ aren’t babysitters, as you called them. I see them as a ‘Team of Coaches’. Their job is to coach you to make the best recovery that you can. Like any athlete or person undertaking a major event in their life, we all need coaches and mentors to help us along the way.
Your journey is no different except instead of one coach … you get to have a team of coaches. A team of people who work together to facilitate your recovery.
This team is going to be big. Many people with different specialties. There are the obvious areas like: physio and occupational therapists, psychologists and doctors. But the bigger and the most important coaches on your team are the people who coach you every day. The homecare workers and the people from the community will coach you in some of the finer details of your recovery.
There is no professional service that can do this type of coaching because it comes with a heart.
Annie was full of energy this morning. It is very uncharacteristic for her. She acted more like a Jack Russell Terrier then a Good Ol’ Cape Breton Farm Dog. She chased the cats relentlessly. They had slipped outside at 3 am this morning when I had to go in to the animal hospital for an emergency. They probably smelled like they were hunting.
Poor Annie, she has been so ripped off lately, forgetting her birthday, being taken out for token poop and pee walks – some birthday yesterday. She needed a real walk …a long birthday walk.
It was a beautiful day. When I realized that I didn’t start work until a little later in the day, I looked at Annie and Annie looked at me and we decided to go for a good long walk … just like in the old days.
It was great walk. My energy was good. I even ran for a little way. I haven’t run in a long time. Today the air was just right and the warm sunlight in my eyes made me feel little running. Some people are not designed to run. I’m one of them. But today I didn’t feel like a prisoner of my body, I felt free to run and I did.
Last year when I ran with the children in the fun run, my knees hurt for a week. So don’t get excited …let’s see how I’m holding up in 24 and 48 hours before I make any commitment to run again.
We even found our favorite type of path … one less traveled by. Annie found good smells and tracks and I found fresh air and clarity in my mind. Annie even spied some deer, but she resisted the urge to chase the deer and stayed by my side. What a good civilized dog.
I am recharged for the rest of the day.
Tara had another music festival competition today. She did well and sang beautifully. She didn’t seem as nervous as she used to sound in the past. I think she is growing up.
You sound good on the phone today too. You joke and praise Tara for her accomplishments at the music festival. She giggles and laughs and acts a little ‘nutso’, as you call it, on the phone. Both Tara and Quinn squeal with delight at the thought of you being home in two days.
You had another good day with your therapists. Tomorrow is your OT’s last day with her. You are going to give her something to remember you by. You want it to be your ring with the ‘Unforgiven minute’ inscribed on it. But you are prepared with a back up plan if she refuses it … a Boston marathon running hat.
Today you got her to read the inscription on the ring. Her young eyes can read it. The two of you discussed the meaning. She suggests it means if you are dealt a raw deal, you play the cards anyway and make the best of it. You heartily agree. Now you really want to give her the ring. We will have to see if she will accept it or not.
You said, “Tomorrow is my last shower!” “Hopefully, it’s not your last shower because I’m not sure I want you home if you don’t plan on staying clean!” I correct you. “Right, well, it’s the last shower with my male OT!” This has been the hardest part of your therapy. You hate shower day. I hope that you come to like it more when you get home.
A fellow lady patient, a smoker, who is next door to your room, asked you for a cigarette today. You gave her a cigarette. Not just one, but you gave her the whole unopened pack of the du Maurier. I think you could hear my smile over the phone line when you told me.
You confess to me that you are a little worried about your life at home and how it will be. I confess that I’m worried too. “We’ll find our way … we have so far … We will have challenges for sure but we will over come them – We just have to believe.“ Giving away half of your smokes is a big step.
‘Helper’ isn’t the right word. The people who are going to be in your life as your ‘support help’ aren’t babysitters, as you called them. I see them as a ‘Team of Coaches’. Their job is to coach you to make the best recovery that you can. Like any athlete or person undertaking a major event in their life, we all need coaches and mentors to help us along the way.
Your journey is no different except instead of one coach … you get to have a team of coaches. A team of people who work together to facilitate your recovery.
This team is going to be big. Many people with different specialties. There are the obvious areas like: physio and occupational therapists, psychologists and doctors. But the bigger and the most important coaches on your team are the people who coach you every day. The homecare workers and the people from the community will coach you in some of the finer details of your recovery.
There is no professional service that can do this type of coaching because it comes with a heart.
Annie was full of energy this morning. It is very uncharacteristic for her. She acted more like a Jack Russell Terrier then a Good Ol’ Cape Breton Farm Dog. She chased the cats relentlessly. They had slipped outside at 3 am this morning when I had to go in to the animal hospital for an emergency. They probably smelled like they were hunting.
Poor Annie, she has been so ripped off lately, forgetting her birthday, being taken out for token poop and pee walks – some birthday yesterday. She needed a real walk …a long birthday walk.
It was a beautiful day. When I realized that I didn’t start work until a little later in the day, I looked at Annie and Annie looked at me and we decided to go for a good long walk … just like in the old days.
It was great walk. My energy was good. I even ran for a little way. I haven’t run in a long time. Today the air was just right and the warm sunlight in my eyes made me feel little running. Some people are not designed to run. I’m one of them. But today I didn’t feel like a prisoner of my body, I felt free to run and I did.
Last year when I ran with the children in the fun run, my knees hurt for a week. So don’t get excited …let’s see how I’m holding up in 24 and 48 hours before I make any commitment to run again.
We even found our favorite type of path … one less traveled by. Annie found good smells and tracks and I found fresh air and clarity in my mind. Annie even spied some deer, but she resisted the urge to chase the deer and stayed by my side. What a good civilized dog.
I am recharged for the rest of the day.
Tara had another music festival competition today. She did well and sang beautifully. She didn’t seem as nervous as she used to sound in the past. I think she is growing up.
You sound good on the phone today too. You joke and praise Tara for her accomplishments at the music festival. She giggles and laughs and acts a little ‘nutso’, as you call it, on the phone. Both Tara and Quinn squeal with delight at the thought of you being home in two days.
You had another good day with your therapists. Tomorrow is your OT’s last day with her. You are going to give her something to remember you by. You want it to be your ring with the ‘Unforgiven minute’ inscribed on it. But you are prepared with a back up plan if she refuses it … a Boston marathon running hat.
Today you got her to read the inscription on the ring. Her young eyes can read it. The two of you discussed the meaning. She suggests it means if you are dealt a raw deal, you play the cards anyway and make the best of it. You heartily agree. Now you really want to give her the ring. We will have to see if she will accept it or not.
You said, “Tomorrow is my last shower!” “Hopefully, it’s not your last shower because I’m not sure I want you home if you don’t plan on staying clean!” I correct you. “Right, well, it’s the last shower with my male OT!” This has been the hardest part of your therapy. You hate shower day. I hope that you come to like it more when you get home.
A fellow lady patient, a smoker, who is next door to your room, asked you for a cigarette today. You gave her a cigarette. Not just one, but you gave her the whole unopened pack of the du Maurier. I think you could hear my smile over the phone line when you told me.
You confess to me that you are a little worried about your life at home and how it will be. I confess that I’m worried too. “We’ll find our way … we have so far … We will have challenges for sure but we will over come them – We just have to believe.“ Giving away half of your smokes is a big step.
Tuesday April 20 – Heroes You Haven’t met Yet
This morning, I wake to the sound of the radio. Don Connolly is interviewing Rev. Diane Tingley and her daughter. I sleepily lay in bed and let the words drift in my foggy head. They are marathon runners and did Boston yesterday. They share some of their experience with Don.
I smiled to myself and thought ‘How nice… another ‘If you believe then you can’ story. I didn’t really take the interview in - I just let it drift over me … until I heard the words ‘Organ Donor’. Diane is an organ donor. Part of her message was that one can give significant gifts of oneself and still go on to have a full and fulfilling life.
I was hooked and bolted out of bed. I found Diane’s email address on the internet. She is a minister at a United Church in Bedford. This is too much of a coincidence. Tonight, I emailed her to see if she would come and visit you and share her story and personal insights with you. Insights that come from a fellow runner have a lot more credibility.
Maybe I’m crazy but I sense that she has a message for you.
After work I picked up the children and got them to the pool for their swimming lesson. As I settle at the poolside, I exchange waves with Quinn as he goes about his class. Tara, on the other hand, grabs my attention a different way. “These goggles don’t fit – they leak all the time!” I think she expected me to wave my magic wand and make them work instantly. When I explained that she would have to put up with them as they are for now, she turns sharply on her heel and stomped away.
“That’s my oldest … my daughter the ‘Sun’. Thinks everything revolves around her.” I explain to the parent sitting beside me. It turns out that the lady beside me is actually a grandparent … we look the same age. She was there with her granddaughter who is a loving cuddly child like Quinn. “This is my second family.” She explains. We compare notes on raising children and how different they can be.
Cindy is a breast cancer survivor … no…a thrivor. She tells me of her struggles and her resolve to keep going. I think her grandchildren are a strong motivation for her. They counted on her and she needed to be needed. She has a strong sense of purpose.
It’s been four years now and no cancer. She is a little nervous of the future but she is living, for now, in the now.
Next week you probably will meet her because you will be needed to exchange waves with Quinn and listen to Tara rant about something. That’s what parents do and you can do that too.
I want you to meet her. She has a message for you too. There are so many heros in your life … many of them, you haven’t met yet.
You called today. You sound great on the phone. Strong and confident. You had a good day. I still want to come home and I haven’t smoked.” You said. Tara is very keen to tell all about her piano piece at the music festival. It went well and she was pleased and when we got home there was an email inviting her to participate in the summer musical ‘Suessical’. She is beaming with pride and I can hear you beam on the other end of the phone.
Quinn gets on the phone. As he talks to you he flips upside down and stands on his head … on the stairs! I’m glad you can’t see this … you would freak and scream something like “Stop that. That’s how someone gets hurt!” Instead, you happily play with Quinn on the phone. “Three more sleeps!” Quinn sings to me as he hands me back the phone.
That’s right it’s only three more sleeps and as I write this I realize it’s Annie’s second birthday today… Oops, I forgot it.
I smiled to myself and thought ‘How nice… another ‘If you believe then you can’ story. I didn’t really take the interview in - I just let it drift over me … until I heard the words ‘Organ Donor’. Diane is an organ donor. Part of her message was that one can give significant gifts of oneself and still go on to have a full and fulfilling life.
I was hooked and bolted out of bed. I found Diane’s email address on the internet. She is a minister at a United Church in Bedford. This is too much of a coincidence. Tonight, I emailed her to see if she would come and visit you and share her story and personal insights with you. Insights that come from a fellow runner have a lot more credibility.
Maybe I’m crazy but I sense that she has a message for you.
After work I picked up the children and got them to the pool for their swimming lesson. As I settle at the poolside, I exchange waves with Quinn as he goes about his class. Tara, on the other hand, grabs my attention a different way. “These goggles don’t fit – they leak all the time!” I think she expected me to wave my magic wand and make them work instantly. When I explained that she would have to put up with them as they are for now, she turns sharply on her heel and stomped away.
“That’s my oldest … my daughter the ‘Sun’. Thinks everything revolves around her.” I explain to the parent sitting beside me. It turns out that the lady beside me is actually a grandparent … we look the same age. She was there with her granddaughter who is a loving cuddly child like Quinn. “This is my second family.” She explains. We compare notes on raising children and how different they can be.
Cindy is a breast cancer survivor … no…a thrivor. She tells me of her struggles and her resolve to keep going. I think her grandchildren are a strong motivation for her. They counted on her and she needed to be needed. She has a strong sense of purpose.
It’s been four years now and no cancer. She is a little nervous of the future but she is living, for now, in the now.
Next week you probably will meet her because you will be needed to exchange waves with Quinn and listen to Tara rant about something. That’s what parents do and you can do that too.
I want you to meet her. She has a message for you too. There are so many heros in your life … many of them, you haven’t met yet.
You called today. You sound great on the phone. Strong and confident. You had a good day. I still want to come home and I haven’t smoked.” You said. Tara is very keen to tell all about her piano piece at the music festival. It went well and she was pleased and when we got home there was an email inviting her to participate in the summer musical ‘Suessical’. She is beaming with pride and I can hear you beam on the other end of the phone.
Quinn gets on the phone. As he talks to you he flips upside down and stands on his head … on the stairs! I’m glad you can’t see this … you would freak and scream something like “Stop that. That’s how someone gets hurt!” Instead, you happily play with Quinn on the phone. “Three more sleeps!” Quinn sings to me as he hands me back the phone.
That’s right it’s only three more sleeps and as I write this I realize it’s Annie’s second birthday today… Oops, I forgot it.
Wednesday, April 21, 2010
Monday April 19 - The Boston Marathon Day
Today is the day you have been waiting for. I have mixed feeling about the marathon. I worry that it will drive you into a deeper depression. A reminder of what was and will never be again.
You don’t see it that way, You are very excited about the possibility of running again in the mobility impaired class.
Tara is the first one up and dressed. She is wearing her Boston Marathon T-shirt. You dig out your BM shirt and then Quinn finds his. Finally Tara uncovers mine in my closet and hands me it to wear. We are the Official Cashen Boston marathon team.
The home based OT came to meet with you this morning. She wants to trouble shoot before you are discharged from the hospital and make sure that the house is safe for you. I think that you will get along with her very well. She is very keen to make your recovery as complete as possible.
The home based PT will help us develop an exercise program for you so that you are able to have a physical outlet as well as improve your current skills.
The race started at ten. Two running friends, Laura and Sandy, come over to watch the race. Later John, Jennifer and Norris share the experience with you.
You loved the attention … and the 4X4 coffee … and four Boston donuts (your new addiction). You were having so much fun, we lost track of time and left too late to make it to the psychologist appointment. Oh well, you weren’t that keen on seeing him anyway.
We had a great talk in the car. You explained to me that if you started training next week, you might be able to qualify for the Boston Marathon as a mobility impaired runner by next spring.
I wanted to believe this but I thought the time line is a little off. “Take it slow and steady.” I said. “First you could try to walk to the school and then to the school and back then around the neighborhood then 5 km and 10 km walks. Then a slow hop-skip jog. After that anything is possible –you have to be patient and determined.
You got weepy at the thought of the reality that I painted for you.
We talked about SMART goal setting. Goals should be: S = Specific, M = Measureable, A = Attainable, R = Realistic and T = Timely. Making some smart goals now will help you see success sooner and the reward of success feeds more determination.
You are fixated on returning to Boston to race. “I’d give anything to close the finish line in Boston … I’d even die.” How could you think this? The stroke still has a strong hold on your rational brain.
I was blunt with my reply. “How could you sacrifice your family to cross an imaginary line in Boston.” I lecture. ”We need you. Tara really needs her Dad more then ever to help her through her puberty years. Quinn needs you to love and to mentor him in his developing sense of humour and athletics. I need you to love me and keep me sane with your amazing gift of humour.”
You came to the conclusion that there was a twisted irony to your position. Your addiction of gambling lead you to smoking, and running enabled you to smoke, so in a way smoking lead to running. Now, your stroke, which was caused by the unknown, has taken running away from you. “Now smoking won’t let go of me.” You said. “What is really bad it that I didn’t cuddle with you at all this weekend, How stupid am I. That’s because I was so busy thinking of ways to get mad at you so I would have a reason to go out and smoke.”
Just before my call to you at bedtime, you played the – ‘I want to smoke’ game with Janice over the phone. Logic and reason have no place in your decision to cave to your whims. Janice called me to let me know that you were on the verge of smoking.
I call you immediately. I skirt around the topic of smoking and talk about the children instead. “Yes … I’ve been thinking about Tara.” You said. “I think when I get home, I should just hang out with her and get to know her again … be a friend and let her share with me.” I smile at the thought of being a friend to Tara.
You are a great friend to your friends, I think Tara would love this attention. It’s probably just what she needs now. I know that Tara and I will have our conflicts to deal with. Having you in the middle, refereeing, will be a very good buffer.
I ask you how the day has been. “It’s been a good day ... Still no smoking.” As we say good night, you add, “When I get home, I want to be the man you and the kids need me to be.” Wow! I think my blast of rational thinking about putting the family’s needs first, has helped you see the big picture ... both sides of the picture … right and left.
You don’t see it that way, You are very excited about the possibility of running again in the mobility impaired class.
Tara is the first one up and dressed. She is wearing her Boston Marathon T-shirt. You dig out your BM shirt and then Quinn finds his. Finally Tara uncovers mine in my closet and hands me it to wear. We are the Official Cashen Boston marathon team.
The home based OT came to meet with you this morning. She wants to trouble shoot before you are discharged from the hospital and make sure that the house is safe for you. I think that you will get along with her very well. She is very keen to make your recovery as complete as possible.
The home based PT will help us develop an exercise program for you so that you are able to have a physical outlet as well as improve your current skills.
The race started at ten. Two running friends, Laura and Sandy, come over to watch the race. Later John, Jennifer and Norris share the experience with you.
You loved the attention … and the 4X4 coffee … and four Boston donuts (your new addiction). You were having so much fun, we lost track of time and left too late to make it to the psychologist appointment. Oh well, you weren’t that keen on seeing him anyway.
We had a great talk in the car. You explained to me that if you started training next week, you might be able to qualify for the Boston Marathon as a mobility impaired runner by next spring.
I wanted to believe this but I thought the time line is a little off. “Take it slow and steady.” I said. “First you could try to walk to the school and then to the school and back then around the neighborhood then 5 km and 10 km walks. Then a slow hop-skip jog. After that anything is possible –you have to be patient and determined.
You got weepy at the thought of the reality that I painted for you.
We talked about SMART goal setting. Goals should be: S = Specific, M = Measureable, A = Attainable, R = Realistic and T = Timely. Making some smart goals now will help you see success sooner and the reward of success feeds more determination.
You are fixated on returning to Boston to race. “I’d give anything to close the finish line in Boston … I’d even die.” How could you think this? The stroke still has a strong hold on your rational brain.
I was blunt with my reply. “How could you sacrifice your family to cross an imaginary line in Boston.” I lecture. ”We need you. Tara really needs her Dad more then ever to help her through her puberty years. Quinn needs you to love and to mentor him in his developing sense of humour and athletics. I need you to love me and keep me sane with your amazing gift of humour.”
You came to the conclusion that there was a twisted irony to your position. Your addiction of gambling lead you to smoking, and running enabled you to smoke, so in a way smoking lead to running. Now, your stroke, which was caused by the unknown, has taken running away from you. “Now smoking won’t let go of me.” You said. “What is really bad it that I didn’t cuddle with you at all this weekend, How stupid am I. That’s because I was so busy thinking of ways to get mad at you so I would have a reason to go out and smoke.”
Just before my call to you at bedtime, you played the – ‘I want to smoke’ game with Janice over the phone. Logic and reason have no place in your decision to cave to your whims. Janice called me to let me know that you were on the verge of smoking.
I call you immediately. I skirt around the topic of smoking and talk about the children instead. “Yes … I’ve been thinking about Tara.” You said. “I think when I get home, I should just hang out with her and get to know her again … be a friend and let her share with me.” I smile at the thought of being a friend to Tara.
You are a great friend to your friends, I think Tara would love this attention. It’s probably just what she needs now. I know that Tara and I will have our conflicts to deal with. Having you in the middle, refereeing, will be a very good buffer.
I ask you how the day has been. “It’s been a good day ... Still no smoking.” As we say good night, you add, “When I get home, I want to be the man you and the kids need me to be.” Wow! I think my blast of rational thinking about putting the family’s needs first, has helped you see the big picture ... both sides of the picture … right and left.
Sunday April 18 - Heros
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.
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.
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.
Thursday, April 15, 2010
Sunday April 11 - Celebrate Every Day
No church, no Donald visit and no hot tub this weekend. You are disappointed but it’s too hard to juggle these things with being on call. I can’t leave you at the church or Donald’s or in the tub for an indefinite period of time - unsupervised. You aren’t pleased with this.
It will get better, I assure you. Once we get homecare sorted out and a routine to life, things will get better.
The animal emergencies start early today. Luckily, John came to visit just as I received the call to go into the hospital. You and John have a good long visit. When I left, you were singing my praises. When I got back, about three hours later, you were still praising my efforts. I find it hard to believe that you talked about me the whole time … I wonder what you were really talking about …
I don’t really worry about it. I know that John is a good influence on you and that the two of you really connected. That’s what is important. You have been craving friendship at the NSRC and have been getting cold professional shoulders in return. (Except for your PT – she’s wonderful). You need real friendship that supports you but also makes you accountable to the most important person you know … yourself.
PT and OT may help your body become mobile and safe, but friends will heal your ego and help you build your sense of self. You are lucky that you have good friends.
After lunch, you want to smoke. You want to go outside on the deck to smoke. Against my better judgement, I help you outside, while praying under my breath that you will find the self-control not to light up.
You feel that smoking again is inevitable. “I might as well get it out of the way.” You say. “I’ll just smoke one or two …get it out of the way.” You didn’t smoke … you forgot the matches inside! We talked instead. After you said that the feeling passed and you put the cigs away.
Maybe the cigarettes that you bought are not only a means to test yourself every day but they are they are also a way for proving to me that you are worthy of my trust.
You are the only person who can decide to stop smoking. Harold is right. It’s a daily decision.
I wonder if you use the topic of smoking, as a way to get attention, so you don’t smoke. If that’s what works, then that’s great. We will give you as much attention as we can to get you free of the habit. Perhaps one of the first self describing roles that you will use to redefine yourself (besides husband, father, son, brother and friend) will be ex-smoker
You talk to the children about what our family life might look like when you get home. You tell them that assistants will come to help you to do things but you are still going to be their father. You will still make decisions and expect the children to listen to you. They have to trust that your choices are to keep them safe.
“We may have people here who will be different from day to day.” You say. I point out, “The person who is here to look after Daddy’s needs. They aren’t here to wait on you. Daddy’s job is to look after you. Things like getting you a snack, or helping you with homework or discuss how you are going to ride your bike safely etc. These were daddy jobs before and they will be Daddy jobs again.”
You tell them that you really want to walk them home from school. “This will be our special time to chit chat and talk and share things with each other. I missed out on the last seven months of your lives. Mummy has done everything for you. Slowly, I will become your Daddy again ... your Daddy and your friend.”
The homecare person will be here to help Daddy get about safely. I expect that we will become good friends with your ‘assistants’. They will become members of our family. We are all a little excited about the future.
In the early evening, I got another call to look after an animal. Marianne came over to talk with you and the children. When I get back you look very pleased with yourself. The four of you had just had great fun playing cards. I come into a room of giggles and smiles. You decided who will get the golden 29. You gave it away to Marianne.
George came to visit – on his way out, he reminded me of the improvement that you have made since Christmas. That’s what I need to keep reminding myself of over and over again -… how much you have improved since Christmas … the changes are slow but they are real and significant and they need to be celebrated every day.
It will get better, I assure you. Once we get homecare sorted out and a routine to life, things will get better.
The animal emergencies start early today. Luckily, John came to visit just as I received the call to go into the hospital. You and John have a good long visit. When I left, you were singing my praises. When I got back, about three hours later, you were still praising my efforts. I find it hard to believe that you talked about me the whole time … I wonder what you were really talking about …
I don’t really worry about it. I know that John is a good influence on you and that the two of you really connected. That’s what is important. You have been craving friendship at the NSRC and have been getting cold professional shoulders in return. (Except for your PT – she’s wonderful). You need real friendship that supports you but also makes you accountable to the most important person you know … yourself.
PT and OT may help your body become mobile and safe, but friends will heal your ego and help you build your sense of self. You are lucky that you have good friends.
After lunch, you want to smoke. You want to go outside on the deck to smoke. Against my better judgement, I help you outside, while praying under my breath that you will find the self-control not to light up.
You feel that smoking again is inevitable. “I might as well get it out of the way.” You say. “I’ll just smoke one or two …get it out of the way.” You didn’t smoke … you forgot the matches inside! We talked instead. After you said that the feeling passed and you put the cigs away.
Maybe the cigarettes that you bought are not only a means to test yourself every day but they are they are also a way for proving to me that you are worthy of my trust.
You are the only person who can decide to stop smoking. Harold is right. It’s a daily decision.
I wonder if you use the topic of smoking, as a way to get attention, so you don’t smoke. If that’s what works, then that’s great. We will give you as much attention as we can to get you free of the habit. Perhaps one of the first self describing roles that you will use to redefine yourself (besides husband, father, son, brother and friend) will be ex-smoker
You talk to the children about what our family life might look like when you get home. You tell them that assistants will come to help you to do things but you are still going to be their father. You will still make decisions and expect the children to listen to you. They have to trust that your choices are to keep them safe.
“We may have people here who will be different from day to day.” You say. I point out, “The person who is here to look after Daddy’s needs. They aren’t here to wait on you. Daddy’s job is to look after you. Things like getting you a snack, or helping you with homework or discuss how you are going to ride your bike safely etc. These were daddy jobs before and they will be Daddy jobs again.”
You tell them that you really want to walk them home from school. “This will be our special time to chit chat and talk and share things with each other. I missed out on the last seven months of your lives. Mummy has done everything for you. Slowly, I will become your Daddy again ... your Daddy and your friend.”
The homecare person will be here to help Daddy get about safely. I expect that we will become good friends with your ‘assistants’. They will become members of our family. We are all a little excited about the future.
In the early evening, I got another call to look after an animal. Marianne came over to talk with you and the children. When I get back you look very pleased with yourself. The four of you had just had great fun playing cards. I come into a room of giggles and smiles. You decided who will get the golden 29. You gave it away to Marianne.
George came to visit – on his way out, he reminded me of the improvement that you have made since Christmas. That’s what I need to keep reminding myself of over and over again -… how much you have improved since Christmas … the changes are slow but they are real and significant and they need to be celebrated every day.
Saturday April 10 – You Obviously Don’t Know Me Very Well
Today is the ‘Walk and Roll’, the March of Dimes and Stroke Club fund raiser. You are up early and want to get there on time. Just like the before-stroke days, you were always up early to prepare for race day. This morning, you keep snapping the whip to get the family moving to get out the door. You don’t want to be late.
We meet many other stroke survivors and thrivers there. Harold is there and he introduces you to other club members. Most of the members have heard about you through the grapevine. Each person has their own special story of overcoming their new circumstances. We shared stories with a few of the members. They are an inspiring bunch of people. Strokes, and I suspect any major disease that requires a lot of fortitude to overcome, produce special people. Inspiring people.
At the registration desk, you ask “Do we get a bib numbers like in races?” You are taking this Walk and Roll challenge seriously.
The walk started close to one end of the mall and went to the other end. You were determined to walk the entire distance. I was worried that you would overdo it. We moved along slowly with Quinn following behind with the wheelchair incase you needed it.
The pace was slow but steady. At one point one of the organizers suggested that you wheel it to the area of the food court and you could walk a little more there. You looked her in the eye and said, “You obviously don’t know me very well. I am walking this thing.”
Determination has always been your strong suit. You have never quit a marathon. I suspect there are some times when you thought about quitting but you didn’t – you kept going. Even though you knew that there would be no personal best at the end of the day, you weren’t about to get a personal worst either. You always kept going.
In the afternoon, the homecare coordinator came by to show us the service plan and explained a little more about the details of self managed homecare. There is a document that we have to write to apply for self-managed care. She filled in a few medical details and wants you to flesh out the document to explain your vision for the future and your goals from homecare.
In the document, the test score for your mini mental state evaluation is mentioned. It is a 30 point test that evaluates the cognitive status of a person. You scored 29 out of 30. The only thing you missed was the drawing exercise. That is because of your left neglect. To you, the score of 29 represents a perfect score. You are pleased.
Once you get the OK for the self managed care program, we must hire 1 to 2 people to work with you. Finding the right people will be half the battle. We need someone who is able to give you the motivation and emotional support that you need and yet be able to help restore some normalcy back into our family life.
A young friend came to visit you today. Hannah is a runner like her Mother. Karen is running in the Cabot Trail Relay for your team. Hannah is too young to do this yet, but you sense that one day she will love to run as you do. Hannah and her family have been very kind to our family since your marathon begun. You wanted to show her that you appreciated it and that you see a runner when you look at her.
You gave her the last copy of a poster that you got in Boston last year. A poster that has all the runners names on it with the phrase, ‘Greatness goes by many, many names’. You think that someday, Hannah will have her name on a poster.
Generally, you don’t see yourself easily falling back into the Dad role easily. I think you are … you just don’t see it most of the time. In the afternoon, Quinn called from a friend’s place. He had his bike and asked if he should come home now. Without a moment’s hesitation, you told him yes and proceeded to reviewed the rules of the road with him and added at the end. “Drive safely”. After you hung up, you smiled and proudly said to me, “Yah, I made a decision, I told him to come home … all by myself!” Your Dad role is coming along.
Time measurement is still a frustration for you. Tonight, you swore that you called out to me from your mancave while I was upstairs trying to get dinner underway. I couldn’t hear you. “How many times did you call?” I asked. “For at least half an hour!” you replied. You were convinced that I was ignoring you. When I didn’t respond, you decided to take things into your own hands and come up stairs by yourself. You ended up falling up the stairs. Actually, Quinn found you trying to crawl up the stairs.
Communication is a problem between your room and the rest of the house. We will have to think of some way to enable better communication between levels of the house.
In doors and out doors … maybe those walkie talkies that you got many years ago – I’ll bet they are in your mancave hidden in a drawer somewhere.
The same part of you that made you walk the length of the mall this morning also made you try to crawl up the stairs tonight. Your frustration mixed with your headstrong attitude is as much as an asset as it is a liability. I can see that your future recovery team will have to posses the special skill of allowing you to use your determination for good things not risky things.
The evening ended with you not wanting to eat dinner and wanting to smoke. You said that I make you want to smoke. As always, magical timing made the phone ring. It’s a call that I have to go into the hospital for. A dog hit by a car. I called Harold. “I’ll be right over. Harold came to visit you while I tended to the dog. He helped you past the urge to smoke.
Magical timing – the right person in the right place at the right time.
NOTE TO READERS: Chris and I are looking for the right person or people to hire for the self managed care program. If you know of someone who, you think, would like to work with Chris in his recovery, please let them know that we are looking for the right people to help him (Chris says he doesn’t want the ‘wrong people’). Some personal care experience would be helpful. We need someone who is optimistic and organized, flexible (with a schedule …that is), fairly strong, animal and children friendly, reliable, has a driver’s license and can drive a standard and most importantly, appreciates a great sense of humour.
We meet many other stroke survivors and thrivers there. Harold is there and he introduces you to other club members. Most of the members have heard about you through the grapevine. Each person has their own special story of overcoming their new circumstances. We shared stories with a few of the members. They are an inspiring bunch of people. Strokes, and I suspect any major disease that requires a lot of fortitude to overcome, produce special people. Inspiring people.
At the registration desk, you ask “Do we get a bib numbers like in races?” You are taking this Walk and Roll challenge seriously.
The walk started close to one end of the mall and went to the other end. You were determined to walk the entire distance. I was worried that you would overdo it. We moved along slowly with Quinn following behind with the wheelchair incase you needed it.
The pace was slow but steady. At one point one of the organizers suggested that you wheel it to the area of the food court and you could walk a little more there. You looked her in the eye and said, “You obviously don’t know me very well. I am walking this thing.”
Determination has always been your strong suit. You have never quit a marathon. I suspect there are some times when you thought about quitting but you didn’t – you kept going. Even though you knew that there would be no personal best at the end of the day, you weren’t about to get a personal worst either. You always kept going.
In the afternoon, the homecare coordinator came by to show us the service plan and explained a little more about the details of self managed homecare. There is a document that we have to write to apply for self-managed care. She filled in a few medical details and wants you to flesh out the document to explain your vision for the future and your goals from homecare.
In the document, the test score for your mini mental state evaluation is mentioned. It is a 30 point test that evaluates the cognitive status of a person. You scored 29 out of 30. The only thing you missed was the drawing exercise. That is because of your left neglect. To you, the score of 29 represents a perfect score. You are pleased.
Once you get the OK for the self managed care program, we must hire 1 to 2 people to work with you. Finding the right people will be half the battle. We need someone who is able to give you the motivation and emotional support that you need and yet be able to help restore some normalcy back into our family life.
A young friend came to visit you today. Hannah is a runner like her Mother. Karen is running in the Cabot Trail Relay for your team. Hannah is too young to do this yet, but you sense that one day she will love to run as you do. Hannah and her family have been very kind to our family since your marathon begun. You wanted to show her that you appreciated it and that you see a runner when you look at her.
You gave her the last copy of a poster that you got in Boston last year. A poster that has all the runners names on it with the phrase, ‘Greatness goes by many, many names’. You think that someday, Hannah will have her name on a poster.
Generally, you don’t see yourself easily falling back into the Dad role easily. I think you are … you just don’t see it most of the time. In the afternoon, Quinn called from a friend’s place. He had his bike and asked if he should come home now. Without a moment’s hesitation, you told him yes and proceeded to reviewed the rules of the road with him and added at the end. “Drive safely”. After you hung up, you smiled and proudly said to me, “Yah, I made a decision, I told him to come home … all by myself!” Your Dad role is coming along.
Time measurement is still a frustration for you. Tonight, you swore that you called out to me from your mancave while I was upstairs trying to get dinner underway. I couldn’t hear you. “How many times did you call?” I asked. “For at least half an hour!” you replied. You were convinced that I was ignoring you. When I didn’t respond, you decided to take things into your own hands and come up stairs by yourself. You ended up falling up the stairs. Actually, Quinn found you trying to crawl up the stairs.
Communication is a problem between your room and the rest of the house. We will have to think of some way to enable better communication between levels of the house.
In doors and out doors … maybe those walkie talkies that you got many years ago – I’ll bet they are in your mancave hidden in a drawer somewhere.
The same part of you that made you walk the length of the mall this morning also made you try to crawl up the stairs tonight. Your frustration mixed with your headstrong attitude is as much as an asset as it is a liability. I can see that your future recovery team will have to posses the special skill of allowing you to use your determination for good things not risky things.
The evening ended with you not wanting to eat dinner and wanting to smoke. You said that I make you want to smoke. As always, magical timing made the phone ring. It’s a call that I have to go into the hospital for. A dog hit by a car. I called Harold. “I’ll be right over. Harold came to visit you while I tended to the dog. He helped you past the urge to smoke.
Magical timing – the right person in the right place at the right time.
NOTE TO READERS: Chris and I are looking for the right person or people to hire for the self managed care program. If you know of someone who, you think, would like to work with Chris in his recovery, please let them know that we are looking for the right people to help him (Chris says he doesn’t want the ‘wrong people’). Some personal care experience would be helpful. We need someone who is optimistic and organized, flexible (with a schedule …that is), fairly strong, animal and children friendly, reliable, has a driver’s license and can drive a standard and most importantly, appreciates a great sense of humour.
Friday April 9 – The Meaning of Loss
This morning I experienced a loss and a gain. I lost hot water but I gained the knowledge of how to identify a blown fuse. I know these are small things but it got me thinking about loss.
The last few weeks we have had hot water problems. This morning, I had a cold shower. Yuk. That is when I realized that I took hot water for granted. Cold showers suck.
Previously, I had figured out that the fuse blows. If I replace it I solve the problem until the fuse blows again. This was happening more and more often. Now I have a pile of fuses that I can’t tell if they are good or not. So today I called the repair guy.
He got here within 23 minutes of my phone call! How’s that for service. The box was shorting out and that blew the fuses. Within 30 minutes he had the box fixed and taught me how to tell the difference between good and bad fuses. We had hot water again.
I look at your losses and realize how much I take my body for granted. I have sensory input and abilities that don’t even register on the radar of everyday living. While your losses are profound, they could be worse.
More importantly, when you view your losses from a different way, there are gains. The book I’m reading now, ‘Five People You Meet in Heaven’ highlights this concept. Losses and gains can be the same thing when viewed differently. Perhaps in some obscure way this reveals a small bit of the meaning of life.
On the way home, we visit Mum at the Halifax infirmary. As I busy myself with getting her water and other comforts, the two of you talk. I had to excuse myself to go to the washroom. I could over hear the two of you comparing your hospital experiences and swapping advised of how to make it more tolerable. At one point, I overhear your voice penetrate the bathroom door. “Well, we’re not going to try the vigara anymore, I was getting headaches and my blood pressure went up. The duct tape and tongue depressors didn’t work very well either so I don’t know what we’ll do.” You say with a sigh. I couldn’t hear Mum’s response … thankfully.
Great, Mum never knew when you were serious and when you were kidding before your stroke. Your comic delivery of a line is still very strong … I wonder what she thought.
The last few weeks we have had hot water problems. This morning, I had a cold shower. Yuk. That is when I realized that I took hot water for granted. Cold showers suck.
Previously, I had figured out that the fuse blows. If I replace it I solve the problem until the fuse blows again. This was happening more and more often. Now I have a pile of fuses that I can’t tell if they are good or not. So today I called the repair guy.
He got here within 23 minutes of my phone call! How’s that for service. The box was shorting out and that blew the fuses. Within 30 minutes he had the box fixed and taught me how to tell the difference between good and bad fuses. We had hot water again.
I look at your losses and realize how much I take my body for granted. I have sensory input and abilities that don’t even register on the radar of everyday living. While your losses are profound, they could be worse.
More importantly, when you view your losses from a different way, there are gains. The book I’m reading now, ‘Five People You Meet in Heaven’ highlights this concept. Losses and gains can be the same thing when viewed differently. Perhaps in some obscure way this reveals a small bit of the meaning of life.
On the way home, we visit Mum at the Halifax infirmary. As I busy myself with getting her water and other comforts, the two of you talk. I had to excuse myself to go to the washroom. I could over hear the two of you comparing your hospital experiences and swapping advised of how to make it more tolerable. At one point, I overhear your voice penetrate the bathroom door. “Well, we’re not going to try the vigara anymore, I was getting headaches and my blood pressure went up. The duct tape and tongue depressors didn’t work very well either so I don’t know what we’ll do.” You say with a sigh. I couldn’t hear Mum’s response … thankfully.
Great, Mum never knew when you were serious and when you were kidding before your stroke. Your comic delivery of a line is still very strong … I wonder what she thought.
Thursday April 8 – Reconnect with Baseball
Another day of not smoking again! You thought about it and said that if I hadn’t called that you were going to smoke. I don’t think that is fair. To smoke or not is your choice, and you shouldn’t deflect the choice to my actions.
You asked about the baseball season and the W-L for the Angels. I looked it up for you. You are worried that you won’t be able to follow a game. You have tried to watch a bit of baseball on the TV at the hospital but you feel confused by the game. I don’t know if it’s a concentration thing or something else.
I tell you that Quinn wants to play ball this summer. You have mixed feelings about it. “What use can I be to him. I can throw but I can’t catch.” No binocular vision makes depth perception very difficult. I remind you that there is more to baseball then the physicality of it. There is the strategies and the folklore of the game that you can share with the children.
I can’t think of a better way to reconnect to a passion like baseball then by sharing it with your children.
I will pick you up from the rehab tomorrow. Mum’s surgery went well. You want to visit with her with me on the way home. This will be the first time since Oct 30th that you are back in this hospital. I wonder if it will evoke any memories?
You asked about the baseball season and the W-L for the Angels. I looked it up for you. You are worried that you won’t be able to follow a game. You have tried to watch a bit of baseball on the TV at the hospital but you feel confused by the game. I don’t know if it’s a concentration thing or something else.
I tell you that Quinn wants to play ball this summer. You have mixed feelings about it. “What use can I be to him. I can throw but I can’t catch.” No binocular vision makes depth perception very difficult. I remind you that there is more to baseball then the physicality of it. There is the strategies and the folklore of the game that you can share with the children.
I can’t think of a better way to reconnect to a passion like baseball then by sharing it with your children.
I will pick you up from the rehab tomorrow. Mum’s surgery went well. You want to visit with her with me on the way home. This will be the first time since Oct 30th that you are back in this hospital. I wonder if it will evoke any memories?
Wednesday April 7 – A Long Day but a Good Day
It’s a very early day today. My Mum has to be at the hospital in Halifax by six AM for her long waited for back surgery. That means a four AM wake up to get her to the hospital for her surgery. Going through the doors of the QE2 Halifax Infirmary again felt very strange.
After dropping Mum off, I have to drive right back to Truro because I start my workday at nine AM. There is no time to visit you. I am a little apprehensive about Mum’s surgery. It’s a big surgery and we hope that it will improve her quality of life but it will be a long recovery.
It looks like the hospital visits may end for you but they will start for Mum. Later in the day, Juanita calls to say that Mum’s surgery was six hours long and so far… so good.
As I drive back to Truro I think about how the children have been and will be our salvation. I look at them and I see hope and then I have hope. When I think about your life and my life, I feel tired, when I think about them I am renewed. They impart energy to me that no one else can.
This is good thing because today when I realized, at the last minute, that Tara was to sing at the music festival, I was catapulted into action to get her dressed and at the festival in less then 50 minutes while still at work. Thankfully, Carmen from work, scooped her up and got her to the festival in time while I finished up at work so I could get there to see her perform.
It was a long day but a good day.
You had a good day too. There was a point that you wanted to smoke but a nurse from the 5th floor saved you from smoking and she is a smoker – she gently persuaded you not to smoke. I expect that this is an aquired skill that is not taught at nursing school.
After dropping Mum off, I have to drive right back to Truro because I start my workday at nine AM. There is no time to visit you. I am a little apprehensive about Mum’s surgery. It’s a big surgery and we hope that it will improve her quality of life but it will be a long recovery.
It looks like the hospital visits may end for you but they will start for Mum. Later in the day, Juanita calls to say that Mum’s surgery was six hours long and so far… so good.
As I drive back to Truro I think about how the children have been and will be our salvation. I look at them and I see hope and then I have hope. When I think about your life and my life, I feel tired, when I think about them I am renewed. They impart energy to me that no one else can.
This is good thing because today when I realized, at the last minute, that Tara was to sing at the music festival, I was catapulted into action to get her dressed and at the festival in less then 50 minutes while still at work. Thankfully, Carmen from work, scooped her up and got her to the festival in time while I finished up at work so I could get there to see her perform.
It was a long day but a good day.
You had a good day too. There was a point that you wanted to smoke but a nurse from the 5th floor saved you from smoking and she is a smoker – she gently persuaded you not to smoke. I expect that this is an aquired skill that is not taught at nursing school.
Tuesday, April 13, 2010
Tuesday April 6 - Counting Days and Blessings
I couldn’t sleep well last night. I tossed about and couldn’t find my right place in the bed. You weren’t there. Quinn was there instead and just as I finally did drift off to sleep, he managed to kick me in the head.
Quinn started the count down to when you are home for good. “Two weeks and two days!” He said gleefully this morning. He seemed to have a great sleep. He is wide-awake and ready to go first thing today.
I don’t know how set the ‘discharge date’ is yet. April 22 is on a Thursday and I’m on call again that weekend and have a vet meeting in Halifax on the Friday. I hope to take you home with me on the Friday for good. Official homecare won’t start until after the weekend. Luckily, that weekend I think I only work the nights. I will be able to manage the on call for the nights if I have someone to be on standby for help if needed in the middle of the night. That leaves the days free to be with you.
I can see that life is going to get more complicated when you get home.
You are sad today. “A headache” you said. You hung up on me for the first phone call. You were angry that I didn’t call you last night before bed. I try to help you understand that I couldn’t drive home from Halifax, pick up the children and get them settled in bed and get things ready for the today and get you called before 10pm. I know that you understand that I am trying, but having you hang up on me made me feel awful.
I called back right away. You talk and I listen and we talk more and you seem better. I swallowed hard and asked, “Did you smoke today?” I wasn’t sure I wanted to know the answer. “I wanted to so I checked out the place outside to see if I could get myself there and back OK … but I didn’t smoke.”
The choice was yours and you choose not to smoke … today. I am proud of you. You had a rough day between the stress of me not calling you last night and a headache as well as all the other reasons you could find to justify to yourself that smoking a cigarette was OK – you still choose not to smoke. That is progress.
Quinn is counting down the days until you come home, you are counting up the days of choosing to not smoke and I am trying to count my blessings.
Quinn started the count down to when you are home for good. “Two weeks and two days!” He said gleefully this morning. He seemed to have a great sleep. He is wide-awake and ready to go first thing today.
I don’t know how set the ‘discharge date’ is yet. April 22 is on a Thursday and I’m on call again that weekend and have a vet meeting in Halifax on the Friday. I hope to take you home with me on the Friday for good. Official homecare won’t start until after the weekend. Luckily, that weekend I think I only work the nights. I will be able to manage the on call for the nights if I have someone to be on standby for help if needed in the middle of the night. That leaves the days free to be with you.
I can see that life is going to get more complicated when you get home.
You are sad today. “A headache” you said. You hung up on me for the first phone call. You were angry that I didn’t call you last night before bed. I try to help you understand that I couldn’t drive home from Halifax, pick up the children and get them settled in bed and get things ready for the today and get you called before 10pm. I know that you understand that I am trying, but having you hang up on me made me feel awful.
I called back right away. You talk and I listen and we talk more and you seem better. I swallowed hard and asked, “Did you smoke today?” I wasn’t sure I wanted to know the answer. “I wanted to so I checked out the place outside to see if I could get myself there and back OK … but I didn’t smoke.”
The choice was yours and you choose not to smoke … today. I am proud of you. You had a rough day between the stress of me not calling you last night and a headache as well as all the other reasons you could find to justify to yourself that smoking a cigarette was OK – you still choose not to smoke. That is progress.
Quinn is counting down the days until you come home, you are counting up the days of choosing to not smoke and I am trying to count my blessings.
Monday April 5 – Pep Talks vs the Cigs
You want cigarettes. It is becoming an ongoing conversation. I can’t distract you from it. You want me to enable you to get cigarettes but I can’t. I could not, morally, get you cigarettes anymore then I could put one in Tara or Quinn’s mouth and light it up.
So I said "No, but you can get someone else to do that for you." That's when you thought of the only friend you have who is a bit of a rebel. You called Chris G. He came to your rescue. He got you the two packs you asked for “A mild flavour cigarette because I couldn’t smoke my usual brand now after seven months and a pack of my usual stronger brand.”
I was a little miffed at Chris G for caving to your whims, but then I thought about it.
I think - in hindsight - that having the cigs in your hands empowers you to make the decision not to smoke. I have forgotten that you never actually intended to quit smoking seven months ago - that decision was forced on you. For success - you have to want to quit. For most people to quit, they choose to quit at a non-stressful time in their life. You are trying to quit at the most stressed time of your life. It is a very different battle.
The most important thing for me, at this time, is … if you smoke, there will be no secrets. You promised me you would tell me and I promised you that I would still love you and continue to give you support for quitting.
Chris G empowered you to take charge of something that you can control - the choice not to smoke. One day at a time you say.
After a good night’s rest things seem better. It’s a beautiful day and we are all tired of being indoors in the hospital setting. On Friday, I set up and filled up the hot tub. The hot tub is an ‘appliance’ that we have enjoyed over the years as a family. We bought with my tax refund the year after I was off for a few months recovering from knee surgery. It was sort of my 40th birthday present. We thought that we are or will be entering the back half of our lives and a little physical comfort from time to time is just what we needed.
You enjoyed it the most. After long runs, it would allow your body to loosen and relax. Once the children were pee and poop proof, they started to enjoy the hot tub fun. We would have contests in the tub. Games like: breath holding under water and running around the house in only a bathing suit on a winter’s day and plunging into the tub at the end.
We have had many conversations in the tub. Things like plans for the future and the special gifts that the children show us.
The hot tub is a family bonding appliance. Last fall, I drained it and stored it away for the first time in eight years. I had thought that we might sell it because at the time, I couldn’t imagine how we would get back those experiences. I was wrong.
Getting into the hot tub is a carefully planned event. You are able to walk out to the tub and sit on the edge. As you sit, I lift your left leg up and over the edge while you support yourself steady with the cane in your right hand. Then once you have straddled the edge, you swing your other leg over the edge. And slip into the water.
You must have someone to your left to support you incase you list to your left and be forced to blow bubbles as your head submerges. For the most part you are at ease in the tub. We discover that you have a little sensation to the left of your spine but you can’t feel anything in your left hand or foot. In all, the tub was a good experience. I think it has some therapeutic value for you.
Pep talks. We all take turns to give you pep talks. Tara, Quinn and I, as well as, all your friends. We are getting good at the pep talks. Just as you needed pain medication in the early days and the doctors ordered drugs on an as needed basis, you need emotional pain relief now.
The pep talks are the antidote to your dark thoughts. You need this positive attitude showered on you on a regular basis for treatment and prevention of the darkness. Talking out your emotional pain helps you but it is exhausting to us. I wear down trying to keep you up emotionally. I think that this is what made yesterday so tough.
Today, Tara, Quinn, Chris G, Harold and I tag-team each other with the pep talks. As a result, life is easier and the benefits are wonderful. “ I want to go home and be the best father and husband for my family that I can be.” You say as we drive back to Halifax. “I going to try to work at it. I know it will be hard. I have a lot to live up to. The necklace I gave you represents my promise to work hard at it.”
After dropping you off at the rehab, I realize that there will only be two more trips to the rehab before you are home. Then I realize that we aren’t even at the half-way point yet of your marathon. I feel tired at the thought that we are no where’s near the finish line … I’m beginning to doubt that there is a finish line. This thought drains my energy.
Last night, Tara was upset. She is angry. She has every right to be angry. She even identified her anger in our conversation. When I told her about the stages of grief and that anger was one of them and it was normal to have it, she seemed a little relieved. I recognize that her anger will only get worse if we ignore it as she enters her teen years. Angry teens do stupid things that can have big repercussions. I don’t want that to be in Tara’s life story.
So I said "No, but you can get someone else to do that for you." That's when you thought of the only friend you have who is a bit of a rebel. You called Chris G. He came to your rescue. He got you the two packs you asked for “A mild flavour cigarette because I couldn’t smoke my usual brand now after seven months and a pack of my usual stronger brand.”
I was a little miffed at Chris G for caving to your whims, but then I thought about it.
I think - in hindsight - that having the cigs in your hands empowers you to make the decision not to smoke. I have forgotten that you never actually intended to quit smoking seven months ago - that decision was forced on you. For success - you have to want to quit. For most people to quit, they choose to quit at a non-stressful time in their life. You are trying to quit at the most stressed time of your life. It is a very different battle.
The most important thing for me, at this time, is … if you smoke, there will be no secrets. You promised me you would tell me and I promised you that I would still love you and continue to give you support for quitting.
Chris G empowered you to take charge of something that you can control - the choice not to smoke. One day at a time you say.
After a good night’s rest things seem better. It’s a beautiful day and we are all tired of being indoors in the hospital setting. On Friday, I set up and filled up the hot tub. The hot tub is an ‘appliance’ that we have enjoyed over the years as a family. We bought with my tax refund the year after I was off for a few months recovering from knee surgery. It was sort of my 40th birthday present. We thought that we are or will be entering the back half of our lives and a little physical comfort from time to time is just what we needed.
You enjoyed it the most. After long runs, it would allow your body to loosen and relax. Once the children were pee and poop proof, they started to enjoy the hot tub fun. We would have contests in the tub. Games like: breath holding under water and running around the house in only a bathing suit on a winter’s day and plunging into the tub at the end.
We have had many conversations in the tub. Things like plans for the future and the special gifts that the children show us.
The hot tub is a family bonding appliance. Last fall, I drained it and stored it away for the first time in eight years. I had thought that we might sell it because at the time, I couldn’t imagine how we would get back those experiences. I was wrong.
Getting into the hot tub is a carefully planned event. You are able to walk out to the tub and sit on the edge. As you sit, I lift your left leg up and over the edge while you support yourself steady with the cane in your right hand. Then once you have straddled the edge, you swing your other leg over the edge. And slip into the water.
You must have someone to your left to support you incase you list to your left and be forced to blow bubbles as your head submerges. For the most part you are at ease in the tub. We discover that you have a little sensation to the left of your spine but you can’t feel anything in your left hand or foot. In all, the tub was a good experience. I think it has some therapeutic value for you.
Pep talks. We all take turns to give you pep talks. Tara, Quinn and I, as well as, all your friends. We are getting good at the pep talks. Just as you needed pain medication in the early days and the doctors ordered drugs on an as needed basis, you need emotional pain relief now.
The pep talks are the antidote to your dark thoughts. You need this positive attitude showered on you on a regular basis for treatment and prevention of the darkness. Talking out your emotional pain helps you but it is exhausting to us. I wear down trying to keep you up emotionally. I think that this is what made yesterday so tough.
Today, Tara, Quinn, Chris G, Harold and I tag-team each other with the pep talks. As a result, life is easier and the benefits are wonderful. “ I want to go home and be the best father and husband for my family that I can be.” You say as we drive back to Halifax. “I going to try to work at it. I know it will be hard. I have a lot to live up to. The necklace I gave you represents my promise to work hard at it.”
After dropping you off at the rehab, I realize that there will only be two more trips to the rehab before you are home. Then I realize that we aren’t even at the half-way point yet of your marathon. I feel tired at the thought that we are no where’s near the finish line … I’m beginning to doubt that there is a finish line. This thought drains my energy.
Last night, Tara was upset. She is angry. She has every right to be angry. She even identified her anger in our conversation. When I told her about the stages of grief and that anger was one of them and it was normal to have it, she seemed a little relieved. I recognize that her anger will only get worse if we ignore it as she enters her teen years. Angry teens do stupid things that can have big repercussions. I don’t want that to be in Tara’s life story.
Friday, April 9, 2010
Sunday April 4 – A New Beginning Together.
I thought today was going to be a good day … it wasn’t.
It started out good. In fact, my waking moments almost seemed normal. I awoke because bony elbows and knees were digging into me and I could hear your voice mixed with the children’s giggles. You were teasing the children about Easter Bunny stuff. It felt normal … for a few minutes. By the time I got you out of bed and ready to go for the day the moment of normal had passed. We were both reminded of the lack of normal in our lives as I helped you to the bathroom.
We stall the children with breakfast and the two presents on the kitchen table helped with the delay … briefly. You surprised me with a present too. This isn’t something that we have done it the past. Easter has always just included a few Easter eggs, chocolate of course. We never did presents for the children or each other.
This year is an extraordinary year. You want to mark it with something for me. A necklace. You said that it represented a new beginning for us. I am touched but a little worried that this extravagance will become a habit. Hearing these concerns started you on the downslide. By this time, the children were ready for the real action and they had been patient.
You didn’t want to watch the Easter egg hunt. You didn’t want to see the fruits of your labour from yesterday. I persuaded you to come down to the mancave where your friend the Easter Bunny laid the eggs. Of course the entire hunt was over in about 10 minutes. Tara found 23 and Quinn found 18.
The house rule is that the eggs are family property and are to be divided up evenly between the children. Tara and Quinn negotiate various swaps to get the egg colours that they liked the best. I enjoyed watching them work on their bargaining and diplomacy skills. All parties left the bargaining table happy. If only world peace were this easy.
You gave me a necklace. A white gold necklace. This was the surprise that you hinted at yesterday. Juanita helped you pick it out. It is simple and beautiful and even though I am not a jewelry magnet, I wear it with love. For the cost of it, you could have given me two large truckloads of compost, which I would also ‘wear’ with love … all summer long as I play in the garden. You said, as you gave it to me, “This represents our new beginning together. I love you.”
It was great to see so many familiar faces at the church service. You chatted it up with members of the congregation and seemed in a better mood when we left.
I tried to keep the children busy with kid and doggy play dates. Meanwhile, you hovered between sadness and depression. You take me along with you down these dark and scary paths with you.
There are times when your words make me wish that I had never said yes to the surgery that saved your life. Being so caught up in your despair makes it hard for me to see things from the right prospective. I feel like I am kinder to my animal patients then I am being to you. How could I put you through this hell that you are in?
I start to question myself and I lose it. I can’t even find the breath to talk. You pat my head and tell me that you understand that I didn’t know that it would be this bad.
If this is what’s it like on weekends, I worry about what’s it is going to be like after your discharge date on April 22.
Being an optimist by nature, I have always thought, throughout this ordeal, things will get better once you are out of ICU or when the tracheotomy tube is out or when you can talk or when you go to rehab or when you can walk or do stairs.
Now I live in fear of the future. I know that once you are home, it will take a long time for you to heal emotionally from this. There are moments when I don’t know if I can hold out that long.
Quinn has embraced the juggling skill and is moving on to other applications. I suggest that he try bouncing on a ball while juggling. We have a bouncing ball that is designed to do this. “His eyes light up “Cool, Mummy, I am going to try that!” He has the ‘I think I can’ attitude. I hope it is contagious to you … and me.
It started out good. In fact, my waking moments almost seemed normal. I awoke because bony elbows and knees were digging into me and I could hear your voice mixed with the children’s giggles. You were teasing the children about Easter Bunny stuff. It felt normal … for a few minutes. By the time I got you out of bed and ready to go for the day the moment of normal had passed. We were both reminded of the lack of normal in our lives as I helped you to the bathroom.
We stall the children with breakfast and the two presents on the kitchen table helped with the delay … briefly. You surprised me with a present too. This isn’t something that we have done it the past. Easter has always just included a few Easter eggs, chocolate of course. We never did presents for the children or each other.
This year is an extraordinary year. You want to mark it with something for me. A necklace. You said that it represented a new beginning for us. I am touched but a little worried that this extravagance will become a habit. Hearing these concerns started you on the downslide. By this time, the children were ready for the real action and they had been patient.
You didn’t want to watch the Easter egg hunt. You didn’t want to see the fruits of your labour from yesterday. I persuaded you to come down to the mancave where your friend the Easter Bunny laid the eggs. Of course the entire hunt was over in about 10 minutes. Tara found 23 and Quinn found 18.
The house rule is that the eggs are family property and are to be divided up evenly between the children. Tara and Quinn negotiate various swaps to get the egg colours that they liked the best. I enjoyed watching them work on their bargaining and diplomacy skills. All parties left the bargaining table happy. If only world peace were this easy.
You gave me a necklace. A white gold necklace. This was the surprise that you hinted at yesterday. Juanita helped you pick it out. It is simple and beautiful and even though I am not a jewelry magnet, I wear it with love. For the cost of it, you could have given me two large truckloads of compost, which I would also ‘wear’ with love … all summer long as I play in the garden. You said, as you gave it to me, “This represents our new beginning together. I love you.”
It was great to see so many familiar faces at the church service. You chatted it up with members of the congregation and seemed in a better mood when we left.
I tried to keep the children busy with kid and doggy play dates. Meanwhile, you hovered between sadness and depression. You take me along with you down these dark and scary paths with you.
There are times when your words make me wish that I had never said yes to the surgery that saved your life. Being so caught up in your despair makes it hard for me to see things from the right prospective. I feel like I am kinder to my animal patients then I am being to you. How could I put you through this hell that you are in?
I start to question myself and I lose it. I can’t even find the breath to talk. You pat my head and tell me that you understand that I didn’t know that it would be this bad.
If this is what’s it like on weekends, I worry about what’s it is going to be like after your discharge date on April 22.
Being an optimist by nature, I have always thought, throughout this ordeal, things will get better once you are out of ICU or when the tracheotomy tube is out or when you can talk or when you go to rehab or when you can walk or do stairs.
Now I live in fear of the future. I know that once you are home, it will take a long time for you to heal emotionally from this. There are moments when I don’t know if I can hold out that long.
Quinn has embraced the juggling skill and is moving on to other applications. I suggest that he try bouncing on a ball while juggling. We have a bouncing ball that is designed to do this. “His eyes light up “Cool, Mummy, I am going to try that!” He has the ‘I think I can’ attitude. I hope it is contagious to you … and me.
Saturday April 3 - Carpe Diem
The local homecare coordinator came to visit and meet you. She tells us what the homecare workers will do for you. We talk about a schedule and the costs. She explains the self-managed care program to you. This program requires that you are able to act as an employer. You hire and instruct the caregiver. You even over see the budgeting of money that is used to pay for the workers.
The coordinator tells you about the stroke that she had a few years ago. She is empathetic, organized and methodical and knows how things can go wrong and the pitfalls to watch for. I wonder how many of these skill and attributes are part of her and how many are acquired from her experience with a stroke. Regardless, these special skills will help you in your transition from hospital to home life.
I am very excited about this program. You will be able to find the right people or person for you and there will consistency for you and the family. I can imagine that in no time the workers will be family friends.
The rest of Saturday was a typical crazy Saturday. The weekly pattern of going to Halifax was starting to get to me. Now the activities that the children are involved in are starting to swell into a tidal wave. Being home makes it easier to keep them involved in their things.
This is a perennial problem, Just as activities, that started in Sept, are winding down, new summer ones start. This coincides with the beginning of the gardening season (my play time) and the busiest time of the year at work. One way or other, I will get through the next few months. It will be easier with you home and settled into a new routine.
Juanita took you shopping today. You are not a shopper by nature but you haven’t shopped in a long time and there are certain things you want that I won’t get for you. Cigarettes and lotto tickets. The children and I are busy baby sitting Maddie and Farley and zipping out to two singing practices.
In the afternoon when you get back with Juanita – Tara and Quinn and I go to the movie that I promised last weekend but couldn’t deliver because you didn’t want to see another movie. You are still in post traumatic stress syndrome from Avatar. It was painful to go to a movie in the middle of a beautiful day.
I am looking forward to the day that I don’t have to race from thing to thing.
Janice and Edwin and three of their girls come for a quick visit on the way home. I vent my frustration about the cigarettes to Janice. You overhear. So I ask you, point blank, “Did you buy any today?” “No” you said with a frustrated voice, “It seems that the thing I wanted to do the most gets forgotten. I got the lottery tickets but then Juanita did some fancy driving and we didn’t have time.”
I was pleased that you prioritized your shopping needs to include some Easter Bunny things that we will need for tomorrow over your smoking needs. You felt that the children should be spoiled by the Easter bunny this year. I was a little apprehensive about what you would get for them, especially since you went to the banking machine three times since yesterday.
You did well, You got some small chocolate eggs and a present for each of them. A Battleship game and a superball making kit. I thoroughly approved of the presents. You said that you liked Battleship when you were a kid and you could play that with them.
I’m very happy that you were thinking that way.
The money that you withdrew from the bank would have supplied several spoiled children for Easter. “What happened to the rest of the money?” I ask. You just smiled at me. “You’ll see.” You said cryptically. I guess I have to be patient. I have a hunch from discussions that we have had but I’ll wait and see.
“’Carpe Diem’ or ‘Seize the Day’ is what you want tattooed on your left arm. “It won’t hurt to put a tattoo there.” You said. I looked up ‘Carpe Diem’ and the actual phrase that it was used in by Horace, a Latin poet, is: “Seize the day, trusting as little as possible in the future". I’m not sure that is a good thing to put on your arm.
As much as I think that this is an attitude to aspire to, I also have learned the value of having hope of the future. When I first read these words, I hear them from the prospective that ‘trusting as little as possible in the future’ was about having bad expectations.
Maybe one should look at it from the other 180 degrees too. We don’t know what is in the future … really. Rather then focus on the possibilities that aren’t real, we should focus on the realities of the moment. As I write this, I can see my thinking coming to circle about the mediation thing again.
After spending a lifetime thinking about the future and what could be, I can see that Carpe Diem is going to be hard to do.
The coordinator tells you about the stroke that she had a few years ago. She is empathetic, organized and methodical and knows how things can go wrong and the pitfalls to watch for. I wonder how many of these skill and attributes are part of her and how many are acquired from her experience with a stroke. Regardless, these special skills will help you in your transition from hospital to home life.
I am very excited about this program. You will be able to find the right people or person for you and there will consistency for you and the family. I can imagine that in no time the workers will be family friends.
The rest of Saturday was a typical crazy Saturday. The weekly pattern of going to Halifax was starting to get to me. Now the activities that the children are involved in are starting to swell into a tidal wave. Being home makes it easier to keep them involved in their things.
This is a perennial problem, Just as activities, that started in Sept, are winding down, new summer ones start. This coincides with the beginning of the gardening season (my play time) and the busiest time of the year at work. One way or other, I will get through the next few months. It will be easier with you home and settled into a new routine.
Juanita took you shopping today. You are not a shopper by nature but you haven’t shopped in a long time and there are certain things you want that I won’t get for you. Cigarettes and lotto tickets. The children and I are busy baby sitting Maddie and Farley and zipping out to two singing practices.
In the afternoon when you get back with Juanita – Tara and Quinn and I go to the movie that I promised last weekend but couldn’t deliver because you didn’t want to see another movie. You are still in post traumatic stress syndrome from Avatar. It was painful to go to a movie in the middle of a beautiful day.
I am looking forward to the day that I don’t have to race from thing to thing.
Janice and Edwin and three of their girls come for a quick visit on the way home. I vent my frustration about the cigarettes to Janice. You overhear. So I ask you, point blank, “Did you buy any today?” “No” you said with a frustrated voice, “It seems that the thing I wanted to do the most gets forgotten. I got the lottery tickets but then Juanita did some fancy driving and we didn’t have time.”
I was pleased that you prioritized your shopping needs to include some Easter Bunny things that we will need for tomorrow over your smoking needs. You felt that the children should be spoiled by the Easter bunny this year. I was a little apprehensive about what you would get for them, especially since you went to the banking machine three times since yesterday.
You did well, You got some small chocolate eggs and a present for each of them. A Battleship game and a superball making kit. I thoroughly approved of the presents. You said that you liked Battleship when you were a kid and you could play that with them.
I’m very happy that you were thinking that way.
The money that you withdrew from the bank would have supplied several spoiled children for Easter. “What happened to the rest of the money?” I ask. You just smiled at me. “You’ll see.” You said cryptically. I guess I have to be patient. I have a hunch from discussions that we have had but I’ll wait and see.
“’Carpe Diem’ or ‘Seize the Day’ is what you want tattooed on your left arm. “It won’t hurt to put a tattoo there.” You said. I looked up ‘Carpe Diem’ and the actual phrase that it was used in by Horace, a Latin poet, is: “Seize the day, trusting as little as possible in the future". I’m not sure that is a good thing to put on your arm.
As much as I think that this is an attitude to aspire to, I also have learned the value of having hope of the future. When I first read these words, I hear them from the prospective that ‘trusting as little as possible in the future’ was about having bad expectations.
Maybe one should look at it from the other 180 degrees too. We don’t know what is in the future … really. Rather then focus on the possibilities that aren’t real, we should focus on the realities of the moment. As I write this, I can see my thinking coming to circle about the mediation thing again.
After spending a lifetime thinking about the future and what could be, I can see that Carpe Diem is going to be hard to do.
Thursday, April 8, 2010
Friday April 2 – Healing is a Family Affair
It’s another bad morning. You want me to drive you to the Cobequid Trail and leave you there to die. “I want to finish it … I want to finish what I begun, I want to finish dying.”
You feel so useless. When I try to point out what you can do – I strike out.
You keep saying, “I’m sorry, I’m sorry.” Sorry for what – I forgave you a long time ago, you need to forgive yourself. We need to move to the next step – there are things you can do – you have to focus on them, not waste our energy on seeking forgiven that has been given.
We need to get to the next step. The next step. What is the next step? The 12-step program suggests that letting God into your heart is part of it. I confess to you that I don’t know what the next step is but we will find it together. Perhaps the next step isn’t about letting God in, perhaps it’s about finding God within. When you find that energy, you will be able to find yourself again. I wonder if part of your soul died that day and that it is the real loss that you are grieving.
“I’ll try.” You said as I helped move to the chair. As you stood, we hugged. A real stand up hug … just like the hug I felt in my dream the week of your stroke. It felt the same. It felt good. It restored me.
You had breakfast with the children. A rare event in recent history. I slip out to have a shower and eavesdrop on you and the children talking about feelings and sharing feelings. “Communication is the best medicine.” You tell them. I felt good listening to the conversation. When I’m not there, you don’t wallow in self-pity, you step up to the plate and act like a great parent. Listening and giving sound advice. Helping them find the answers to the tougher questions in life. You can do this and you do it well.
At one point this morning before our stand-up hug, I was alone in our bedroom and feeling a little overwhelmed with the words that we had earlier. Tara came in and saw me, feeling weak and vulnerable. She sat beside me and put her arms around me and hugged me. An uncharacteristic action for her. She asked, “Are you OK Mummy?”
“Communication is the best medicine.” The children will be our salvation. They will help us through this recovery. Healing will be a family affair.
You said something today that I really want to get down on paper for proof. You expressed to me that the need that I have … to share our story … is OK with you. You understand if I have to ‘vent’ (your word) to other people. You feel badly that you can’t be on the receiving end and you are looking forward to the day I will vent to you. That’s right, you WANT me to vent to you! These are the words I want to mark. Words that most wives don’t get to hear their husbands say.
There is a lot of talk about the cigarettes. Out of frustration I decide to give you the last pack of cigarettes that you bought before your stroke. This is the pack that I dug out of the garbage last week. I was suddenly inspired to give you them. I am willing to bet that you wouldn’t smoke them because of their significance to you. They are a symbol.
You agree that you wouldn’t smoke them but for a different reason. “They will be stale.” You said “stale and too strong. I haven’t smoked in seven months, I can’t start with du Maurier!” You want to buy more cigarettes. Thank God it’s Good Friday and the stores are closed. I manage to evade your requests.
We agreed that if you smoked, you would not do it on front of me or the children and you won’t smoke in the house. As we discuss this, you read the anti-smoking message on the package. “Children see, Children do.”
I can’t picture you smoking. “I’ve not seen you smoke in the past and I have no desire to watch you smoke now.” You mime taking a drag off a cigarette. Hearing you suck air through your pursed lips gives me the creeps. I don’t want to think of you smoking.
You tell me about smoking when you were a child. Sneaking cigarettes and smoking them in secret. I had no idea that this started long before I even met you.
The children wanted to look at the cigarettes. Tara reads the package. “Your children are twice as likely to smoke if you do. Half of premature deaths among life-long smokers result from tobacco use.” Tara tries to figure the logic … “If we almost lost Daddy once, then that means …” her voice trails off in thought. I don’t want to hear her conclusion.
We explain to them what we had discussed about you smoking. “Daddy is going to work really hard at not smoking but it’s very hard … harder then running in a marathon. He may slip and smoke but he is going to keep trying.”
You felt a little lightheaded today. You try to explain. “It’s like I’m in another dimension. I want to take a can opener and open up my head and let the spirit out. It like in the Dr Suess book, Horton Hears a Who – “I am here, I am here!” I want to be a regular person again. I’m jealous of other people who can walk and run and laugh and drive and be normal.
A neighbor, Darren, stopped by to visit you. He came at a good time. I was running out of positive talk. Like tag team wrestling Darren spells me off and has a turn talking with you. Being a fellow runner and a devoted family man, he grabs your attention and you stop circling the dark thoughts for a while.
It didn’t last long. You try to get the children to imagine what life would have been like without you. You think that we would have had a better life. I don’t have to protest that much … the children try to set you straight. We can’t think about this as an alternate history, because it didn’t happen that way.
This lead to a discussion about the day of your stroke. You asked me to read the first entries in the journal. I read and we all take turns crying. You started and Tara consoles you. I can’t even say the words at times. Tara cries and Quinn says, “lets not talk about it anymore.” He takes a few breaths and waves to me to continue.
Hearing the words helps us purge some of the bad feelings. A healing act. You confess to me that you read that part of the journal yesterday at the hospital. You concluded that you would never know what we went through and we will never know what you went through.
I realize as I write tonight that the family plan for healing is very alive and well in our home. As the children pep talk you and rally you back to a better place. Reading the journal reminded me of all the feelings I had that first day and how the children were my light and reason for hope.
Healing is a family affair.
You feel so useless. When I try to point out what you can do – I strike out.
You keep saying, “I’m sorry, I’m sorry.” Sorry for what – I forgave you a long time ago, you need to forgive yourself. We need to move to the next step – there are things you can do – you have to focus on them, not waste our energy on seeking forgiven that has been given.
We need to get to the next step. The next step. What is the next step? The 12-step program suggests that letting God into your heart is part of it. I confess to you that I don’t know what the next step is but we will find it together. Perhaps the next step isn’t about letting God in, perhaps it’s about finding God within. When you find that energy, you will be able to find yourself again. I wonder if part of your soul died that day and that it is the real loss that you are grieving.
“I’ll try.” You said as I helped move to the chair. As you stood, we hugged. A real stand up hug … just like the hug I felt in my dream the week of your stroke. It felt the same. It felt good. It restored me.
You had breakfast with the children. A rare event in recent history. I slip out to have a shower and eavesdrop on you and the children talking about feelings and sharing feelings. “Communication is the best medicine.” You tell them. I felt good listening to the conversation. When I’m not there, you don’t wallow in self-pity, you step up to the plate and act like a great parent. Listening and giving sound advice. Helping them find the answers to the tougher questions in life. You can do this and you do it well.
At one point this morning before our stand-up hug, I was alone in our bedroom and feeling a little overwhelmed with the words that we had earlier. Tara came in and saw me, feeling weak and vulnerable. She sat beside me and put her arms around me and hugged me. An uncharacteristic action for her. She asked, “Are you OK Mummy?”
“Communication is the best medicine.” The children will be our salvation. They will help us through this recovery. Healing will be a family affair.
You said something today that I really want to get down on paper for proof. You expressed to me that the need that I have … to share our story … is OK with you. You understand if I have to ‘vent’ (your word) to other people. You feel badly that you can’t be on the receiving end and you are looking forward to the day I will vent to you. That’s right, you WANT me to vent to you! These are the words I want to mark. Words that most wives don’t get to hear their husbands say.
There is a lot of talk about the cigarettes. Out of frustration I decide to give you the last pack of cigarettes that you bought before your stroke. This is the pack that I dug out of the garbage last week. I was suddenly inspired to give you them. I am willing to bet that you wouldn’t smoke them because of their significance to you. They are a symbol.
You agree that you wouldn’t smoke them but for a different reason. “They will be stale.” You said “stale and too strong. I haven’t smoked in seven months, I can’t start with du Maurier!” You want to buy more cigarettes. Thank God it’s Good Friday and the stores are closed. I manage to evade your requests.
We agreed that if you smoked, you would not do it on front of me or the children and you won’t smoke in the house. As we discuss this, you read the anti-smoking message on the package. “Children see, Children do.”
I can’t picture you smoking. “I’ve not seen you smoke in the past and I have no desire to watch you smoke now.” You mime taking a drag off a cigarette. Hearing you suck air through your pursed lips gives me the creeps. I don’t want to think of you smoking.
You tell me about smoking when you were a child. Sneaking cigarettes and smoking them in secret. I had no idea that this started long before I even met you.
The children wanted to look at the cigarettes. Tara reads the package. “Your children are twice as likely to smoke if you do. Half of premature deaths among life-long smokers result from tobacco use.” Tara tries to figure the logic … “If we almost lost Daddy once, then that means …” her voice trails off in thought. I don’t want to hear her conclusion.
We explain to them what we had discussed about you smoking. “Daddy is going to work really hard at not smoking but it’s very hard … harder then running in a marathon. He may slip and smoke but he is going to keep trying.”
You felt a little lightheaded today. You try to explain. “It’s like I’m in another dimension. I want to take a can opener and open up my head and let the spirit out. It like in the Dr Suess book, Horton Hears a Who – “I am here, I am here!” I want to be a regular person again. I’m jealous of other people who can walk and run and laugh and drive and be normal.
A neighbor, Darren, stopped by to visit you. He came at a good time. I was running out of positive talk. Like tag team wrestling Darren spells me off and has a turn talking with you. Being a fellow runner and a devoted family man, he grabs your attention and you stop circling the dark thoughts for a while.
It didn’t last long. You try to get the children to imagine what life would have been like without you. You think that we would have had a better life. I don’t have to protest that much … the children try to set you straight. We can’t think about this as an alternate history, because it didn’t happen that way.
This lead to a discussion about the day of your stroke. You asked me to read the first entries in the journal. I read and we all take turns crying. You started and Tara consoles you. I can’t even say the words at times. Tara cries and Quinn says, “lets not talk about it anymore.” He takes a few breaths and waves to me to continue.
Hearing the words helps us purge some of the bad feelings. A healing act. You confess to me that you read that part of the journal yesterday at the hospital. You concluded that you would never know what we went through and we will never know what you went through.
I realize as I write tonight that the family plan for healing is very alive and well in our home. As the children pep talk you and rally you back to a better place. Reading the journal reminded me of all the feelings I had that first day and how the children were my light and reason for hope.
Healing is a family affair.
Tuesday, April 6, 2010
Thursday April 1 – Relationships and Feelings
Today, on my way to work, I was thinking about relationships. Normal relationships verses ‘abnormal’ relationships. A normal relationship is a two-way exchange of information and sharing feelings and ideas.
You are surrounded by abnormal relationships while you are at the NSRC. I suppose that the medical community must try to distance themselves from the patient. A necessary skill to avoid compassion fatigue. However, I do wonder how helpful this one-way relationship is to the patient. This illustrates to me very vividly why it is so important to have people around a patient who belong in the patient’s life in a ‘normal’ capacity. A healing energy comes from healthy relationships.
This morning Tara was very helpful. She got up early and fed the cats and put Annie out to pee. She then took Quinn’s order of breakfast. It all seemed too good to be true. Then I realized what she was up to. It’s April fool’s day! As I get my breakfast, I see her slip some cat food into Quinn’s peanut butter sandwich.
Quinn suspects right away that something is up. He eyes the sandwich with suspicion then he takes a bite. He smiles and chews and shallows and refuses to give Tara the satisfaction of being a pranker. His resolve to outsmart Tara fades before he can take to second bite. He can’t talk or even swallow again. He runs to his room very upset. I follow him and rally his spirits with the advice that revenge is sweet and best served cold. Once I explain what this means, he smiles at the thought.
Marsha brought you home from the NSRC after her work today. You arrive just in time to come with me to pick up the children and take them to piano lessons. Tara and Quinn are excited to show off their pianist skills.
In the evening, your tell me about your new OT. You really like her but you are worried that you are going to alienate her. You have been asking her some probing questions and feel that you hit a nerve with her. You can’t seem to accept that she wants to keep your relationship professional. “Possibly” I point out “She doesn’t want to burden you with her problems.”
You feel that you “must have been saved for some reason.” You are trying to figure out why. “Maybe I am supposed to help her in some way?” I suggest that tomorrow, you could visit Donald. Maybe you were supposed to help him or any number of people who know or will meet in the future. Who knows their destiny. You just have to have faith that your life has a reason.
“I should have died … I was robbed of death.” These are your bedtime thoughts. They are hard thought to hear. I know that to heal, you must verbalize these notions but that doesn’t make any easier to listen to them. Especially since I feel responsible for you having the surgery that saved your life.
When I said yes to the surgery, I didn’t picture life quite like this. I didn’t know what the picture would look like. When I’m close to you physically and emotionally, I get swept up in your depression and it is hard to bare. I feel horrid. Then I try to imagine how you feel. It’s too much to bear.
My only thread to sanity is to escape from your words and the feelings they evoke. When I do this try to escape, I feel worse. I created this hell for you why should I be able to escape it when you can’t.
I have to find a better way to cope when you are home fulltime.
You are surrounded by abnormal relationships while you are at the NSRC. I suppose that the medical community must try to distance themselves from the patient. A necessary skill to avoid compassion fatigue. However, I do wonder how helpful this one-way relationship is to the patient. This illustrates to me very vividly why it is so important to have people around a patient who belong in the patient’s life in a ‘normal’ capacity. A healing energy comes from healthy relationships.
This morning Tara was very helpful. She got up early and fed the cats and put Annie out to pee. She then took Quinn’s order of breakfast. It all seemed too good to be true. Then I realized what she was up to. It’s April fool’s day! As I get my breakfast, I see her slip some cat food into Quinn’s peanut butter sandwich.
Quinn suspects right away that something is up. He eyes the sandwich with suspicion then he takes a bite. He smiles and chews and shallows and refuses to give Tara the satisfaction of being a pranker. His resolve to outsmart Tara fades before he can take to second bite. He can’t talk or even swallow again. He runs to his room very upset. I follow him and rally his spirits with the advice that revenge is sweet and best served cold. Once I explain what this means, he smiles at the thought.
Marsha brought you home from the NSRC after her work today. You arrive just in time to come with me to pick up the children and take them to piano lessons. Tara and Quinn are excited to show off their pianist skills.
In the evening, your tell me about your new OT. You really like her but you are worried that you are going to alienate her. You have been asking her some probing questions and feel that you hit a nerve with her. You can’t seem to accept that she wants to keep your relationship professional. “Possibly” I point out “She doesn’t want to burden you with her problems.”
You feel that you “must have been saved for some reason.” You are trying to figure out why. “Maybe I am supposed to help her in some way?” I suggest that tomorrow, you could visit Donald. Maybe you were supposed to help him or any number of people who know or will meet in the future. Who knows their destiny. You just have to have faith that your life has a reason.
“I should have died … I was robbed of death.” These are your bedtime thoughts. They are hard thought to hear. I know that to heal, you must verbalize these notions but that doesn’t make any easier to listen to them. Especially since I feel responsible for you having the surgery that saved your life.
When I said yes to the surgery, I didn’t picture life quite like this. I didn’t know what the picture would look like. When I’m close to you physically and emotionally, I get swept up in your depression and it is hard to bare. I feel horrid. Then I try to imagine how you feel. It’s too much to bear.
My only thread to sanity is to escape from your words and the feelings they evoke. When I do this try to escape, I feel worse. I created this hell for you why should I be able to escape it when you can’t.
I have to find a better way to cope when you are home fulltime.
Monday, April 5, 2010
Wednesday March 31 – Connecting and Connections
Still a busy signal on your phone – first thing in the morning. “It must be off the hook, who else would be calling you at 7am?” I call the nurse’s station and it was off the hook. I finally reached you and you were worried when I didn’t call. You feel the need to connect every day. You are craving real relationships.
You were worried that I had left you for someone else! This has been a worry for you over the last few weeks. I find it frustrating to talk to you about this. “Where would I find the time?” I ask you. “Life is far too complicated as it is, I have no interest in making it more complicated.” My logic doesn’t sink your fears. I guess irrational fears are … just that irrational. Logic has no effect. I try different tactics. Still no success. Perhaps this is something that time will heal. I hope so because this is a conversation that I don’t enjoy at all.
Your PT timed you today. She timed a lap of the PT floor. You walked, alone – you think, down the hall cut across by the elevators and back up the hall to the PT gym. It took 9min 45sec. Not a fast pace but it is a good baseline to measure yourself against.
You like your new OT. With most of the medical professionals who have helped you and you like, you would like to get to know better. She would rather keep the relationship professional.
Pre-stroke, you always had a knack of asking probing and often personal questions of people you want to know better. This has not changed. This is your way of reaching out and connecting to others. The problem with this approach, in a hospital setting, is that the medical staff want to keep their relationship with you professional. This relationship is a one way thing. They get to know all about you but you don’t get to know much about them. This makes relationships rather artificial and as a result they are not rewarding.
When you get home you will be able to invest yourself in real relationships with family and friends that are rewarding and healthy.
Today I connected with an amazing family from Tatamagouche. Joan, the mother, is very involved in brain injury recovery. She has two very good reasons to so passionate about brain injury recovery. Her daughter had major brain surgery that left her with half a brain and her husband had surgery last year for a brain aneurysm. Like you, he is a runner and has run in twenty-five marathons!
Joan’s idea is to help brain injured survivors help their recovery by using their talents that they have and allow family, especially children, assist in the recovery. I made a promise to visit when you get home and we find a rhythm to family life again. I think that you will want to be involved in this project.
Once again, I am in awe of the frequency that people find us and we find people who wish to share their inspiring story with us. I picture us as neurons, making new connections with others and building an amazing machine that will make a difference. New connections every day.
You were worried that I had left you for someone else! This has been a worry for you over the last few weeks. I find it frustrating to talk to you about this. “Where would I find the time?” I ask you. “Life is far too complicated as it is, I have no interest in making it more complicated.” My logic doesn’t sink your fears. I guess irrational fears are … just that irrational. Logic has no effect. I try different tactics. Still no success. Perhaps this is something that time will heal. I hope so because this is a conversation that I don’t enjoy at all.
Your PT timed you today. She timed a lap of the PT floor. You walked, alone – you think, down the hall cut across by the elevators and back up the hall to the PT gym. It took 9min 45sec. Not a fast pace but it is a good baseline to measure yourself against.
You like your new OT. With most of the medical professionals who have helped you and you like, you would like to get to know better. She would rather keep the relationship professional.
Pre-stroke, you always had a knack of asking probing and often personal questions of people you want to know better. This has not changed. This is your way of reaching out and connecting to others. The problem with this approach, in a hospital setting, is that the medical staff want to keep their relationship with you professional. This relationship is a one way thing. They get to know all about you but you don’t get to know much about them. This makes relationships rather artificial and as a result they are not rewarding.
When you get home you will be able to invest yourself in real relationships with family and friends that are rewarding and healthy.
Today I connected with an amazing family from Tatamagouche. Joan, the mother, is very involved in brain injury recovery. She has two very good reasons to so passionate about brain injury recovery. Her daughter had major brain surgery that left her with half a brain and her husband had surgery last year for a brain aneurysm. Like you, he is a runner and has run in twenty-five marathons!
Joan’s idea is to help brain injured survivors help their recovery by using their talents that they have and allow family, especially children, assist in the recovery. I made a promise to visit when you get home and we find a rhythm to family life again. I think that you will want to be involved in this project.
Once again, I am in awe of the frequency that people find us and we find people who wish to share their inspiring story with us. I picture us as neurons, making new connections with others and building an amazing machine that will make a difference. New connections every day.
Tuesday March 30 – A Visiting Team.
My day starts out like every other day. Crazy. I have to rush to my eye doctor in Halifax for an eye appointment. I rush to wait. I waited almost two hours only to find out that my bad eye, is worse. I am losing vision in my right eye and you have lost it in your left. Between the two of us, we have one pair of good eyes. As we age, it will be the blind leading the blind. What a team.
I get more drugs to help save my sight and prevent further damage to my eyes. I wonder aloud to my doctor, about the possibility of stem cell therapy helping my sight in the future. He isn’t very helpful. I expect the field is too new and little is known yet.
Thankfully, my eye condition is slowly progressive and although the left eye is affected the vision is still good. I am confident that in time, there will be other treatments available.
When I discussed stem cell therapy with your doctor a few weeks ago, I mentioned that I figured that stem cell therapy is going to flip rehab medicine upside down. Your doctor agreed. Stem cell treatment is going to rework a lot of medicine, as we know it
Timing is everything. Will the steep learning curve for stem cell research and application be accomplished by the time we can capitalize on the stem cells therapy for you to get the best results?
My ophthalmologist asks at the end of the appointment how you are doing. I try to give him the inventory list of your losses. The words still get caught in my throat; Hemiplegic, hemianopsia and left neglect. I will have to get used to saying the words but it is hard to mouth them.
On the way home, I thought about your visiting team. If I can get together a group of people who would visit you regularly then we would have a large part of the odd hours that I will not be with you covered. I have already had a few people say that I was to consider them to help out.
In many ways, this is like our situation from the fall. So many kind and loving people opened up their hearts to Tara and Quinn. Once again I find myself reaching out to our close knit community to help with your recovery.
I have started a list. If any readers of the blog, who live in or around Truro, wish to visit Chris occasionally, please let me know by emailing me at ccashen@eastlink.ca.
No phone call tonight. Your line was busy, busy, busy. I hope that you aren’t upset with me like last Thursday when I could not get through.
I get more drugs to help save my sight and prevent further damage to my eyes. I wonder aloud to my doctor, about the possibility of stem cell therapy helping my sight in the future. He isn’t very helpful. I expect the field is too new and little is known yet.
Thankfully, my eye condition is slowly progressive and although the left eye is affected the vision is still good. I am confident that in time, there will be other treatments available.
When I discussed stem cell therapy with your doctor a few weeks ago, I mentioned that I figured that stem cell therapy is going to flip rehab medicine upside down. Your doctor agreed. Stem cell treatment is going to rework a lot of medicine, as we know it
Timing is everything. Will the steep learning curve for stem cell research and application be accomplished by the time we can capitalize on the stem cells therapy for you to get the best results?
My ophthalmologist asks at the end of the appointment how you are doing. I try to give him the inventory list of your losses. The words still get caught in my throat; Hemiplegic, hemianopsia and left neglect. I will have to get used to saying the words but it is hard to mouth them.
On the way home, I thought about your visiting team. If I can get together a group of people who would visit you regularly then we would have a large part of the odd hours that I will not be with you covered. I have already had a few people say that I was to consider them to help out.
In many ways, this is like our situation from the fall. So many kind and loving people opened up their hearts to Tara and Quinn. Once again I find myself reaching out to our close knit community to help with your recovery.
I have started a list. If any readers of the blog, who live in or around Truro, wish to visit Chris occasionally, please let me know by emailing me at ccashen@eastlink.ca.
No phone call tonight. Your line was busy, busy, busy. I hope that you aren’t upset with me like last Thursday when I could not get through.
Monday March 29 – Focus on the Feelings.
It wasn’t hard to get the children up today. You are still home and it’s a school morning. They are both excited. You are going to go to the school with them. Like most siblings, they fight over who is going to get push you in the chair and which classroom you are going to visit first.
It’s a great visit. So many familiar faces. You would spend all day there if I hadn’t dragged you away. You know all the children in both Tara and Quinn’s classes. You volunteered with the classes since they started in their primary year.
You roll around the classes and name each child by name and asking questions about their life that you missed. Occassionally, you would stumble over a name but you got most of them right. I could tell you are pleased with yourself that you remembered all the important details.
We are almost late for your PT session. Just as we roll in the door, you recall the PT saying that she had cancelled you session today. You had forgotten to tell me. Oh man, all the hurry and worry to be on time for nothing.
We had a psychologist appointment in the morning. I had forgotten, but the psychologist hadn’t and tracked us down. I guess we are even in our forgetfulness – Your excuse is that you had a catastrophic stroke.,.. what’s mine?
It was a good session. A lot less tears then the first time we had met together. There were several topics and he said, “We covered a lot of ground.” He said. You wondered aloud if the psychologist gets paid more for covering a lot of ground. He smiled.
I couldn’t tell if covering a lot of ground quickly was a good thing or a bad thing. Oh well, I guess it’s really more important to think of success in terms for how you feel at the end of the session. I think we both felt good.
The epiphany for me today was centered around my thoughts on your desire to smoke. On the car ride to Hailfax, we talked about this and I said that I figured that the reason you told me about your smoking was because you, subconsciously, wanted my help in trying to shake it. You had tried before on your own, but it is hard enough to quit. To quit without support must be very hard. I told you that I would be strong for you if you needed me to be strong.
I even took the two packs of cigarettes out of the garbage can where I put them last week. I wrapped up the open pack in 29 layers of duct tape. I said that I didn’t want to enable you to smoke but it had to be your decision to quit. So I gave the wrapped package and said that the 29 layers of duct tape would be hard to get through. It will give you lots of time to think whether you really wanted to smoke or not.
I wanted to make starting to smoke as hard, if not, harder then quitting to smoke. 29 layers of duct tape seemed like a good symbolic barrier to smoking to me.
When I shared my approach with the psychologist, he frowned. He said I got it all wrong. He enlightened me. “Don’t make smoking the battle ground. Chris has to want to quit.” He said that when you talk about smoking, it is because you are trying to find a way to cope with your feelings at the time. So I shouldn’t focus on the smoking … I should focus on the feelings that you have.
My epiphany is that the desire to smoke is a symptom of unpleasant feelings that you need to explore. I am actually relieved with this view. I am not a confrontational person by nature, I was uncomfortable with the idea of physically preventing you from smoking. I like this approach much better.
I would rather explore feelings then run interference.
We talked about the Sunday afternoon and how the children reacted to your dark mood. I realize that I have to recruit help to be with you while I do things with the children. It’s not fair to them to deny them their childhood pleasures. I don’t want them to feel that you are to ‘blame’ for the circumstances they find themselves in.
At the end of the day, I met with your new OT person. She is the third OT you have had since you started at the rehab. You think she is new but she was actually your first OT. She worked with you in the fall at the Halifax Infirmary. She gave you your first chair. Now she is helping to order your, hopefully, last chair.
I like this OT. She was great and I sense that she is very keen on her position. She reviews what she knows about with you and the layout of our home. We trouble shoot problems.
I ask her about a therapy of left neglect. The Lighthouse technique. Your doctor had suggested it to your first OT, but nothing was done, and when the interim OT took over, he wasn’t interested in starting something new. Thankfully, this OT is interested and wants to start this treatment with you. I feel very positive about your ‘new’ old OT.
It’s a great visit. So many familiar faces. You would spend all day there if I hadn’t dragged you away. You know all the children in both Tara and Quinn’s classes. You volunteered with the classes since they started in their primary year.
You roll around the classes and name each child by name and asking questions about their life that you missed. Occassionally, you would stumble over a name but you got most of them right. I could tell you are pleased with yourself that you remembered all the important details.
We are almost late for your PT session. Just as we roll in the door, you recall the PT saying that she had cancelled you session today. You had forgotten to tell me. Oh man, all the hurry and worry to be on time for nothing.
We had a psychologist appointment in the morning. I had forgotten, but the psychologist hadn’t and tracked us down. I guess we are even in our forgetfulness – Your excuse is that you had a catastrophic stroke.,.. what’s mine?
It was a good session. A lot less tears then the first time we had met together. There were several topics and he said, “We covered a lot of ground.” He said. You wondered aloud if the psychologist gets paid more for covering a lot of ground. He smiled.
I couldn’t tell if covering a lot of ground quickly was a good thing or a bad thing. Oh well, I guess it’s really more important to think of success in terms for how you feel at the end of the session. I think we both felt good.
The epiphany for me today was centered around my thoughts on your desire to smoke. On the car ride to Hailfax, we talked about this and I said that I figured that the reason you told me about your smoking was because you, subconsciously, wanted my help in trying to shake it. You had tried before on your own, but it is hard enough to quit. To quit without support must be very hard. I told you that I would be strong for you if you needed me to be strong.
I even took the two packs of cigarettes out of the garbage can where I put them last week. I wrapped up the open pack in 29 layers of duct tape. I said that I didn’t want to enable you to smoke but it had to be your decision to quit. So I gave the wrapped package and said that the 29 layers of duct tape would be hard to get through. It will give you lots of time to think whether you really wanted to smoke or not.
I wanted to make starting to smoke as hard, if not, harder then quitting to smoke. 29 layers of duct tape seemed like a good symbolic barrier to smoking to me.
When I shared my approach with the psychologist, he frowned. He said I got it all wrong. He enlightened me. “Don’t make smoking the battle ground. Chris has to want to quit.” He said that when you talk about smoking, it is because you are trying to find a way to cope with your feelings at the time. So I shouldn’t focus on the smoking … I should focus on the feelings that you have.
My epiphany is that the desire to smoke is a symptom of unpleasant feelings that you need to explore. I am actually relieved with this view. I am not a confrontational person by nature, I was uncomfortable with the idea of physically preventing you from smoking. I like this approach much better.
I would rather explore feelings then run interference.
We talked about the Sunday afternoon and how the children reacted to your dark mood. I realize that I have to recruit help to be with you while I do things with the children. It’s not fair to them to deny them their childhood pleasures. I don’t want them to feel that you are to ‘blame’ for the circumstances they find themselves in.
At the end of the day, I met with your new OT person. She is the third OT you have had since you started at the rehab. You think she is new but she was actually your first OT. She worked with you in the fall at the Halifax Infirmary. She gave you your first chair. Now she is helping to order your, hopefully, last chair.
I like this OT. She was great and I sense that she is very keen on her position. She reviews what she knows about with you and the layout of our home. We trouble shoot problems.
I ask her about a therapy of left neglect. The Lighthouse technique. Your doctor had suggested it to your first OT, but nothing was done, and when the interim OT took over, he wasn’t interested in starting something new. Thankfully, this OT is interested and wants to start this treatment with you. I feel very positive about your ‘new’ old OT.
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