The last time I drove my car was almost a year ago, June 24th of last year. We had been at a Fete St. Jean party at the club. When we left to go home it was raining hard, and the car had a flat tire. I could not even contemplate changing a car tire, I might as well lift a house, both equally impossible. A kind person changed the wheel for us. The drive home was a nightmare, the rear right wheel locked up for some reason shortly after we left the parking lot. I decided I would get the thing home if at all possible without me having to get out of the car. I was frightened and close to panic. The car shuddered and squealed from the seized wheel but I was able to keep it going, somehow. I was so afraid of having to get out of the car, move, talk to people and coordinate getting the car taken care of and getting home. It was all too much. As George T. had warned me once, don't let your mind write checks that your body can't cash. I was out in the rain with a busted car and about to get into real trouble. We made it home safe.
I decided not to fix the car right away, to do without for a while, save some money. Summer past, fall then winter and now spring is here. I have not driven a car. I got rid of our car in November when I first started to realize that maybe it would be better if I gave up driving. Better for everybody. Better for that little kid I will not hurt because I lost consciousness behind the wheel.
Driving was something I learned to do in the 60's. I bet I spent time during the late 50's on my dad's knee steering on the highway. Those were different times. I crashed my first car twice, both times lucky to get away clean, before I was 19. One was my fault, the other not. Both I would have skated away from only a few years later when I had learned to control a car. I worked hard at learning how to control a car. Parking lots and losing control were one of my favorite things to do. You gotta lose it to know how to get it back when it's all going south on you. I ran the uninhabited dirt roads in Rawdon where there were no houses or people, yet. I think I got pretty good at it if I do say so myself.
Back then we were, collectively, idiots when it came to driving. Everybody drove smashed. If you could walk or crawl to your car you were good to go. Really, it was only as a young adult that awareness that perhaps were were being assholes started to creep in with public service messages on tv. I drove so drunk, so many times it is unfathomable from the perspective of 2014. How I did not kill someone during all that time? We learned and we all stopped doing it. Life went on and a whole lot of folks got to keep living. Ask my bro in law about crossing the T Can in Alberta someday.
When I parked the car last June I had full intention of getting back behind the wheel. Now, I know I never will drive a car again and it's my choice. Fate, karma call it what you will protected me when I was ignorant. I am no longer ignorant about the harm that a vehicle can cause. I had SIX heart attacks last year, and hundreds of minutes where I was debilitated instantaneously by coughing, for minutes at a time, eyes closed, entirely out of it for a minute or two.
This is really the most thought I have given to the matter since I decided for certain a couple of months ago. If I thought about it much the pain would be too sharp to bear. Like a lot of things about this journey, you just have to go with it and not look back. Looking back is death. Looking at now is life. I don't look back much at all and I do not look forward either. I try to see and be. That's all.
A couple of days ago I was sitting by the big window watching a little girl walk with her mother. She kept stopping to bend down to play with the daisies. Nicole and I were talking about me, about how I was doing with being stuck and shut in, the not driving, all of the huge changes in my life. I pointed to the little girl and told Nicole that the little girl was my role model, to become as her was my goal. I want to make all of the adult complexities that permeate life go away. I want to destroy the ego that will one day erase that child. One a man, twice a child. I think I have done well so far. I do not see as I did. I do not carry weight I don't need. I am at peace with the world. As this world shrinks the possibilities expand.
Love.
Thursday, 15 May 2014
Wednesday, 7 May 2014
It is 10:00 AM, I am outside, the temperature is 16 and rising fast. A glorious day to spend outside. I think I have cleaned up about 1/3 of our property. My goal is to get another 1/3 done today, but, who knows. I am writing now because I have a story to tell and I rather hope it takes all day to flesh it out as it deserves.
Quick health update: I feel excellent, better than I have in two years at least. Don't take that to mean I have more breath. I don't. I do however feel much stronger than I have in a long time. That, combined with the skills I learned at rehab and a mind free of clutter makes life most excellent at the moment. Everything is working. Time to push hard.
It is playoff time in these hockey mad parts. Last night I held my breath, screamed in agony followed by cries of joy and generally lost my mind for a few hours while Nos Glorieux, Le Club de Hockey Canadiens, my Habs battled the evil, satanic Boston Bruins. We won and lead the series 2 games to 1, but that is not the point of this story. How I came to be a die hard Habs fan for life, is.
Some of my earliest memories are of Saturday night hockey games. I was maybe three or four, the year would be 1958 or 1959. Hockey Night in Canada came on TV at 8:00 PM, midway through the first period. Of course at that age I was not watching the game, I was either tucked into my bed at home, or as often would be the case, lying on a pile of coats, along with my sister, at Nana's or Auntie May's house, supposedly sleeping. Now, if we were at home only some drapes separated our bedroom from the living room where the tv was. Invariably there would be a significant number of people in that living room, whooping it up and drinking beer and rum and cokes. Our parents at the time were the ripe old age of 21 or 22, the grandparents double that. It was a large and young extended family that lived close to each other. Saturday nights were for getting together and having a good time. It was hard to miss anything.
My dad got me playing, or rather, trying to play hockey at a normal, young age. A canadian boy in the early 60's played hockey, outside, on a team. You cleaned the ice before the game, and between periods, yourself. The changing room was an old CPR caboose with a wood stove. It don't get more authentic than that. To my dad's everlasting disappointment, and maybe just a tinge of shame, I was entirely hopeless at hockey. I could not skate off my ankles. No supports available at the time helped. I skated on my ankles seriously bad. I tried immensely hard to learn how to skate. I walked the four blocks up to the skating rink at the park on Vimont and la Fontaine to skate by myself hundreds of times in attempts to get better. I could not skate backwards nor stop properly. I played anyway for a few years, my dad tying my skates, cheering me on, hoping I think against hope that I would find the spark that would turn me into a hockey player. Even at that age of 6 or 7 kids were being identified as being serious players with potential. I was nowhere near that quality. I think in the maybe 3 or 4 years I played I distinguished myself by getting 1 penalty. No goals. No assists. I was so desperate the last year to do something, anything, that one game the kid who was the goalie did not make the game. I guess in those days teams of 7 year olds did not have back up net minders. I volunteered. Big mistake. I don't think I stopped a single shot, and 7 year olds with wooden sticks hardly did anything with a puck that resembled shooting. Everything happened in slow motion and I was paralysed. Not good. My poor dad. He knew it was over.
A few years later as a 10 year old I came out of the athletic wastelands a wiser lad. Hockey had a million negatives for me, but there were lessons learned as well. I loved to move, run and compete, even when I had no success. I found soccer and football, curling and other games that I excelled in at various times. I think my dad was sort of "meh" about them though. It was not hockey.
By time I was 6 or 7 I was allowed to watch the game through the second period on Saturday night. The Canadiens always won the Stanley Cup, year after year it seemed, until I was 25.
I went to my first game at the Montreal Forum for my 10th birthday, a present from my dad. The Detroit Red Wings were playing the Habs in a late February or early March game. Gordie Howe was my dad's favorite non Habs player. Dad had been talking about how good he was, how he did things in the corners and how mean he could be. It was a night I am sure my dad always remembered. I think Howe had what was known as a Howe hat trick, a goal an assist and a fight. It was to be the first of many, many games at the Forum with my dad.
Later, during my early teenage years my dad took a part time job at the Forum slinging hot dogs and beer at Habs games. I don't think dad really needed the money but it helped. He enjoyed playing the angles and he loved being able to see all the hockey he wanted. After a while, when he knew the folks and the ropes, the doors to the Forum opened for me. I more or less had a standing room season ticket. I lived the dream of a Montreal kid by going to the Forum when I wanted to. So many great memories. "The Stanley Cup parade will take the usual route" says Mayor for life Drapeau each and every spring.
My dad's connection to the Forum and les Canadiens stayed strong the rest of his life. Once, I would have been 30 ish, I needed something special for a golf tournament fund raiser that Nicole and I put on for Children's Wish Foundation. I asked my dad if he could score a couple of season tickets to the Habs, an impossible request here in Montreal. Dad came up with them and the auction raised over 10K. Dad made a lot of good friends at the Forum. He was part of a great and glorious tradition. How could I not be Bleu, Blanc, Rouge for life?
Go Habs, Go. Dad is watching the Drive For Twenty Five.
Quick health update: I feel excellent, better than I have in two years at least. Don't take that to mean I have more breath. I don't. I do however feel much stronger than I have in a long time. That, combined with the skills I learned at rehab and a mind free of clutter makes life most excellent at the moment. Everything is working. Time to push hard.
It is playoff time in these hockey mad parts. Last night I held my breath, screamed in agony followed by cries of joy and generally lost my mind for a few hours while Nos Glorieux, Le Club de Hockey Canadiens, my Habs battled the evil, satanic Boston Bruins. We won and lead the series 2 games to 1, but that is not the point of this story. How I came to be a die hard Habs fan for life, is.
Some of my earliest memories are of Saturday night hockey games. I was maybe three or four, the year would be 1958 or 1959. Hockey Night in Canada came on TV at 8:00 PM, midway through the first period. Of course at that age I was not watching the game, I was either tucked into my bed at home, or as often would be the case, lying on a pile of coats, along with my sister, at Nana's or Auntie May's house, supposedly sleeping. Now, if we were at home only some drapes separated our bedroom from the living room where the tv was. Invariably there would be a significant number of people in that living room, whooping it up and drinking beer and rum and cokes. Our parents at the time were the ripe old age of 21 or 22, the grandparents double that. It was a large and young extended family that lived close to each other. Saturday nights were for getting together and having a good time. It was hard to miss anything.
My dad got me playing, or rather, trying to play hockey at a normal, young age. A canadian boy in the early 60's played hockey, outside, on a team. You cleaned the ice before the game, and between periods, yourself. The changing room was an old CPR caboose with a wood stove. It don't get more authentic than that. To my dad's everlasting disappointment, and maybe just a tinge of shame, I was entirely hopeless at hockey. I could not skate off my ankles. No supports available at the time helped. I skated on my ankles seriously bad. I tried immensely hard to learn how to skate. I walked the four blocks up to the skating rink at the park on Vimont and la Fontaine to skate by myself hundreds of times in attempts to get better. I could not skate backwards nor stop properly. I played anyway for a few years, my dad tying my skates, cheering me on, hoping I think against hope that I would find the spark that would turn me into a hockey player. Even at that age of 6 or 7 kids were being identified as being serious players with potential. I was nowhere near that quality. I think in the maybe 3 or 4 years I played I distinguished myself by getting 1 penalty. No goals. No assists. I was so desperate the last year to do something, anything, that one game the kid who was the goalie did not make the game. I guess in those days teams of 7 year olds did not have back up net minders. I volunteered. Big mistake. I don't think I stopped a single shot, and 7 year olds with wooden sticks hardly did anything with a puck that resembled shooting. Everything happened in slow motion and I was paralysed. Not good. My poor dad. He knew it was over.
A few years later as a 10 year old I came out of the athletic wastelands a wiser lad. Hockey had a million negatives for me, but there were lessons learned as well. I loved to move, run and compete, even when I had no success. I found soccer and football, curling and other games that I excelled in at various times. I think my dad was sort of "meh" about them though. It was not hockey.
By time I was 6 or 7 I was allowed to watch the game through the second period on Saturday night. The Canadiens always won the Stanley Cup, year after year it seemed, until I was 25.
I went to my first game at the Montreal Forum for my 10th birthday, a present from my dad. The Detroit Red Wings were playing the Habs in a late February or early March game. Gordie Howe was my dad's favorite non Habs player. Dad had been talking about how good he was, how he did things in the corners and how mean he could be. It was a night I am sure my dad always remembered. I think Howe had what was known as a Howe hat trick, a goal an assist and a fight. It was to be the first of many, many games at the Forum with my dad.
Later, during my early teenage years my dad took a part time job at the Forum slinging hot dogs and beer at Habs games. I don't think dad really needed the money but it helped. He enjoyed playing the angles and he loved being able to see all the hockey he wanted. After a while, when he knew the folks and the ropes, the doors to the Forum opened for me. I more or less had a standing room season ticket. I lived the dream of a Montreal kid by going to the Forum when I wanted to. So many great memories. "The Stanley Cup parade will take the usual route" says Mayor for life Drapeau each and every spring.
My dad's connection to the Forum and les Canadiens stayed strong the rest of his life. Once, I would have been 30 ish, I needed something special for a golf tournament fund raiser that Nicole and I put on for Children's Wish Foundation. I asked my dad if he could score a couple of season tickets to the Habs, an impossible request here in Montreal. Dad came up with them and the auction raised over 10K. Dad made a lot of good friends at the Forum. He was part of a great and glorious tradition. How could I not be Bleu, Blanc, Rouge for life?
Go Habs, Go. Dad is watching the Drive For Twenty Five.
Friday, 2 May 2014
because
What we doin here
I started writing Transplant story when I realized that I was inevitably going on what I had come to view as a journey. It's for me. In the last thirteen months I find myself looking back at early posts in order to better see where I have been and where I am going. It has been helpful to me. Keeping that record helps me to adjust my thinking and perspective as circumstances change. That is the only reason I do it. It is sad and somewhat telling that sometimes people might view it as a means to an end, a manipulation if you will, or sadder still, an attempt to elicit sympathy. That Transplant story is wound into my G+ experience is a happy coincidence, a most happy one for me. It was just a matter of timing, I found G+ at the same time I decided I needed to write about what was going to happen to me, and they acquired Blogger about the same time and it was right there in my face, so I grabbed it and started.
I joined G+ in mid March 2013. A lot of the folks who comment on Transplant story regularly I met very early on through G+. Virtually all the comments that are made on Transplant story come from my G+ world, not MRL. In a perfect world I probably would not spend upwards of a half a dozen hours or more everyday interacting with my circles, that time would be spent with RL people. I am shut in, mostly. The phone rings a few times a week. There is a knock on the door once a month or so. Out of sight out of mind. I have no bitterness. My RL is quite full, considering. I am very loved. There are though far too many hours, days and weeks where it is just Nicole and I. G+ fills the void and does so in an amazing way. I have heard "your internet friends" said a few times IRL during the last year, always with disdain and a lack of comprehension. What a wonderful thing I have found and become community with. I leave the comments on because most of the comments come from people who help keep me strong and who encourage me. Any thoughts someone might have that suggest otherwise says a whole lot more about you than it does about me.
A few G+ people have written me privately to tell me some wonderful things. I have touched and inspired them. That makes me feel fantastic.
Transplant story has about a year before any real transplant stuff takes place again. I plan to tell some stories, talk more about Nicole and share my feelings about the universe. I like stream of consciousness dumps too but I seem to get into trouble with those. On vera.
I love you RL, you too G+ peeps. Find me anytime on G+.
Tuesday, 29 April 2014
Have yourself a lovely summer, they said
Dr. A. said while recording notes, about me, very advanced COPD, progressive bilateral emphysema, currently STABLE!
Stable.
The meeting with Dr. A. and Ester lasted about an hour. Nothing hurried or rushed. They are very methodical. They remember who I am, what is going on with me. They touch patients. They listen. I love these two.
My lung numbers, FEV1 and such, are pretty much unchanged from last time, and the numbers are highest since last spring.
We think I had six heart attacks during the spring and summer of last year. Three times between April and June last year I had what I thought were severe breathing attacks that lasted perhaps an hour or so each that I was able to ride out without losing consciousness. Another took place a week or two before the main event that put me down, I wrote about it in late August. Then the one that put me in the hospital at the end of August, and another that took place a few days later while I was in the hospital. None since. None of them had anything to do with my lungs as I assumed. Heart attacks they was. That being said, the latest echocardiogram from February shows modest improvement in the magic number (for the transplant folks) LVEF1. Dr. A. says I hit 40%. Dr. Poirier said thats the number I need as a minimum. I am probably somewhere around borderline. Questions about building my heart up were politely deflected. I did not press. I think they are hopeful.
The tumour, growth, dare I say, cancer, is stable and unchanged over the last year. Now it has to remain that way for another year before I will qualify for a lung transplant. I feel confident it will stay that way, and, until I am advised otherwise we shall nevermore call it a cancer. My lungs have many lesions, this is just another. No biggie.
Just so we kept on a roll I asked the Dr. please, pretty please, may I have my scans at the Jewish? Can you please save me from the complete failure to communicate that results every farking time when I get tests at the Lakeshore? Yes. Joy. A cardiologist please. Yes again. Everything now happens at the Jewish General. Everybody on the same page for the rest of my life. No more wasting months getting information to the right place. I like that a lot. Now, even the ambulance goes to the Jewish General.
So, chill for the summer. Doctors orders. My high fat ice cream prescription has been refilled. I gained and maintained eight pounds over the last couple of months, enough to make my BMI peachy perfect. No appointments for four months. However I do have immediate access to Dr. A. through Ester if the need arises.
I slept last night right through. Not a lot has changed since yesterday in reality, but I feel quite a bit different. I have nothing to do other than keep doing what I have been doing. Ester called me an iron man yesterday. Just keep doing what you are doing. I am far more active and stronger than they would expect, even though it feels otherwise to me. I have adapted to not being able to get out, but I don't like it.
I doubt I will drive again. I don't think that would be in anyones best interest. Fear of losing consciousness while driving will not go away. Even coughing fits, which happen multiple times a day now, can last a few minutes and are entirely debilitating and come on with no notice. I so love driving. I love, love, love driving, anytime, anywhere. I am done with you. Thank you Autobhan. I love you.
This remains a transplant blog. I had my doubts yesterday morning. I went to the hospital yesterday to get buried. The bastards said, not so fast.
Hello Aunt June. Hello Sis. Hi Cousins, nieces, great nieces and nephews. See ya tomorrow for muscles and beers, Wayno and Wilson. The quiche was wonderful Lana and Brenda! Stay safe on the road Gary! Hello Kimmy! See you all soon Quebec Lawn Bowlers! I'll be watching.
LOVE
Monday, 28 April 2014
True story
Appointment with Dr. A. late this afternoon. I don't care much.
Sleeping horribly lately. Haunted by hate. Do not comprehend.
True story: Owed money (2K) by ex employer (family). Wait the legally mandated nine months before asking the government to help collect. Collect. Watch as family, friends and acquaintances receive emails advising them I run a grow op. Watch them get copied on an email to my two nieces telling them that I am trying to harm their family and to cease having contact with me. Contact stops. Years pass. Heart broken still. Honest. True story. Not one word out of place. We were good, loving influences. Nothing short of evil this is.
I feel better now but I imagine my blog will now be savaged again. Death threats and wishes for my expedited death are expected as the order of the day. Tonite I will sleep. Tomorrow I will exorcise as I WISH. Fuck the trolls. Fearless I are.
Regarding that true story: Everybody saw. True story.
I simply had to spit this bile out.
Oh.
Sleeping horribly lately. Haunted by hate. Do not comprehend.
True story: Owed money (2K) by ex employer (family). Wait the legally mandated nine months before asking the government to help collect. Collect. Watch as family, friends and acquaintances receive emails advising them I run a grow op. Watch them get copied on an email to my two nieces telling them that I am trying to harm their family and to cease having contact with me. Contact stops. Years pass. Heart broken still. Honest. True story. Not one word out of place. We were good, loving influences. Nothing short of evil this is.
I feel better now but I imagine my blog will now be savaged again. Death threats and wishes for my expedited death are expected as the order of the day. Tonite I will sleep. Tomorrow I will exorcise as I WISH. Fuck the trolls. Fearless I are.
Regarding that true story: Everybody saw. True story.
I simply had to spit this bile out.
Oh.
Tuesday, 15 April 2014
Inside, upside, all around and down again
If I let myself feel anything right now nothing good would happen. Staying numb, not thinking, is the thing, at least for now. If I get all logical and think things out in my current state of mind the only conclusion would be to get serious right now about planning out the end game of my life. I have not done that beyond knowing that the best case scenario if I want to avoid becoming stroked out, locked in and the other horrible fates that await me, is going to be suicide. Any other choice and I will risk having things happen to me that I am more afraid of than I am of dying.
Nicole and I have talked about "it", and I have broached the subject with my family and friends. Everybody seems to understand. No one has suggested that my thinking is cloudy on the subject. I want to live! I think everybody recognizes that. I am even willing to suffer quite a bit more than I already do, to live a little more, but there must be a limit otherwise I risk losing control of my own fate. Go massive heart attack! Go team! Just not yet, please.
By time I left Dr. P.'s office yesterday we were smiling at each other, I had calmed down. Notre Dame had not sent him anything. Two months and nothing. At least I have data from him to send to Notre Dame, but it will amount to nothing, I am no stronger than I was and the prognosis only gets worse with time. He did not remember, even with my file open what drugs he had prescribed. He asked me for my drug list, I said no, use my chart, you tell me. It took him ten minutes during which I grew increasingly angry with him as I caught him out on various points which indicated he was virtually unfamiliar with said chart. He told me, no kidding, honest, that if I was in Lakeshore for something and surgery was indicated he would sign off on it. I pointed out that ALL of my pneumologists assure me that I would not survive any surgical procedure. He replied that, well that's your lungs,your heart is up to it. He don't know it yet but his ass is fired. Dr. A., when I see you later this month we need to coordinate this circus.
One thing that Dr. P. said that makes sense: It may be time to apply to other jurisdictions, specifically Toronto. Montreal is known to have really strict criteria, Toronto is more flexible. As if.
I would have had no way to end this positive today, but, my old friends Wilson and Wayne just called and they are coming to drag my sorry ass out to lunch at a brew pub. Happy Daze.
I love you all.
Nicole and I have talked about "it", and I have broached the subject with my family and friends. Everybody seems to understand. No one has suggested that my thinking is cloudy on the subject. I want to live! I think everybody recognizes that. I am even willing to suffer quite a bit more than I already do, to live a little more, but there must be a limit otherwise I risk losing control of my own fate. Go massive heart attack! Go team! Just not yet, please.
By time I left Dr. P.'s office yesterday we were smiling at each other, I had calmed down. Notre Dame had not sent him anything. Two months and nothing. At least I have data from him to send to Notre Dame, but it will amount to nothing, I am no stronger than I was and the prognosis only gets worse with time. He did not remember, even with my file open what drugs he had prescribed. He asked me for my drug list, I said no, use my chart, you tell me. It took him ten minutes during which I grew increasingly angry with him as I caught him out on various points which indicated he was virtually unfamiliar with said chart. He told me, no kidding, honest, that if I was in Lakeshore for something and surgery was indicated he would sign off on it. I pointed out that ALL of my pneumologists assure me that I would not survive any surgical procedure. He replied that, well that's your lungs,your heart is up to it. He don't know it yet but his ass is fired. Dr. A., when I see you later this month we need to coordinate this circus.
One thing that Dr. P. said that makes sense: It may be time to apply to other jurisdictions, specifically Toronto. Montreal is known to have really strict criteria, Toronto is more flexible. As if.
I would have had no way to end this positive today, but, my old friends Wilson and Wayne just called and they are coming to drag my sorry ass out to lunch at a brew pub. Happy Daze.
I love you all.
Wednesday, 2 April 2014
I dunno
It is probably safe to say I survived winter now. I would not have bet on it six months ago, but hey, I have never been much of a gambler anyway. I turned 60 a month ago. Sixty I never thought I would see. Family history and a decade of hell bent self destruction seemed to ensure I would not. Here I am, though. Mentally I am stronger than I ever have been before. I know who I am and I love that person. I have learned my lessons well. I don't have any answers as to my direction at the moment. I feel lost but I have not stopped searching. I lack a dream, something to work for and towards. Perhaps that is too harsh. I do have something and that is Nicole. Making sure she will be ok now and in the future. For sure that is my main goal in life now and forevermore. I mean me, myself, I. What do I yearn for? What do I want beyond a good death? Physically, I feel perfectly powerful until I move. When I do, all of my energy is instantly vaporizes into nothing. Empty. Fall down in a heap empty. I am constantly surprised by this. Constantly. Every time I expect to be like I was. Strong, coordinated, quick. I am not. This is too rude. Like a baby, helpless in a heap. The infernal optimist will be fooled again and again and again. There is seemingly no end to the surprise my weakness brings, each and every time I get up. Outright stupidity and self deception or indomitable spirit? Indomitable I say! I have no dream, no yearnings and that is bad, bad, bad! You can't look forward without a dream, and if you don't look forward you are dead. I am not dead. I need a dream!
I need to write everyday, honestly without ego, with perspective. I have been asleep, wasting my time being introspective and closed. Open flower, open. Spring is here! Live! Love! Blow up that bubble! Now!
I need to write everyday, honestly without ego, with perspective. I have been asleep, wasting my time being introspective and closed. Open flower, open. Spring is here! Live! Love! Blow up that bubble! Now!
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