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.
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