Between January of 1967 and sometime in either late 1970 or early 1971 (memory fails me on the exact timing), I lived in Stave Falls. My father had purchase 27 acres of rough land out in the backwoods along the Dewdney Trunk Road, right along the border of Mission and Maple Ridge municipal districts. Back then this was truly rural; it might as well have been in another country it was so far from anything.
There were 12 children at home in these years, the combinations of my Dad's five boys with my Mom who was his first wife, my step-mother's 6 children from her first marriage, and their daughter, my half-sister. It was a crowded house with plenty of kids, constant noise, and about a million square miles of bush right out the back door. In those days the whole area was one big logging region, so there were both current logging operations and the remnants of old logging operations, constant reminders of what built the province of BC.
Our house was small, just under 1,000 square feet. We had six boys in the main bedroom, four girls in the attic, two girls in one small bedroom, and my Dad and step-Mother in the other small bedroom. We had a oil stove in the kitchen for cooking and heat in the winter, and we had a wood and coal furnace in the basement.
The oldest boys were the firewood cutters. As the second oldest, part of my regular chores was cutting down trees and cutting them up into firewood. We were supposed to do this in the summer, stacking the wood into the basement for use in the winter. That way it would have time to dry before we had to use it. We were not always successful in managing that timeline and many a winter's morning we would be up early trying to light a fire in that damnable furnace with green, wet wood, producing more smoke than heat and getting nothing but trouble for our efforts.
So we cut down trees. Most of the time we cut trees down with a bucksaw. I was only 12 or 13 at the time, and I was small for my age. My big brother was larger and stronger, so it was mostly he and I who did the heavy cutting. Sometimes we had a chainsaw. Sometimes it worked.
This was where the fun began. We would find a suitable tree for firewood. Then one of the younger boys, usually Peter or Jim, would climb the tree. Then, between Adam and me, one of us would stand on the chainsaw handle to hold it down while the other pulled the cord to start the saw. After a while as we grew bigger and stronger, or when we had a smaller chainsaw, it took only one of us to start the saw.
Once the saw was running, one of us would grab it and we would cut down the tree, boy on board and all. Then the boy in the tree would ride it down, holding on for dear life as it crashed down, jumping at the last minute to avoid landing on other trees or in the brush that almost always entangled the falling logs.
Sometimes we took the ride even further. We hooked up logs to the tractor, or to some old car my Dad bought cheap. Then we rode the logs in as the tractor, truck, car or whatever, towed them out of the back pasture up to the barn. It was like skiing or surfing, only on the small alder logs that we towed behind the tractor.
I think that's where I learned that just because it was work didn't mean it couldn't be fun. It's also where I learned about consequences and the importance of meeting a timeline. Oh, and how to dance.
Thursday, 14 March 2013
Wednesday, 13 March 2013
Sadness
Sometimes, for no apparent reason whatsoever, I will be sitting at my desk or sitting in my chair at home and this wave of sadness pours over me so strongly it is almost physical. One minute I am reading or working or thinking, and then suddenly out of the blue I feel immensely sad. It's not always about ALS; I know this happens to other people too, normal people, people who don't have a terminal illness.
Yesterday morning I awoke feeling that way, swamped in the distress of my disease, wondering whether or not I should even bother to get out of bed. In reality every day when I wake up I start the day thinking about ALS. Every day begins with "Ah shit." Then I get past it and move into life and living. Yesterday morning there was no getting past it. I just wanted to stay in bed a feel sad, sliding deeply into my own personal slough of self-pity.
It doesn't work, you know, sliding down into self-pity. It may feel overwhelming at the moment but in reality is is a passing cloud, a moment when weakness takes over and blessings are hidden. To move onward all I need do is take the first step, do the first thing, think the first thought past the screen door of my depression.
Most mornings I think "I'll get up and make coffee. Then I will write and feel better." I know this is true because I do it so often. Yet on the morning in question I was lacking even that emotional strength. I didn't have the psychic energy to consider even getting out of bed. So instead I thought to myself, "All I have to do is swing one leg over the edge of the bed and the second one will follow, sort of." My legs don't work all that well so it's a bit of drama to get them moving.
I did it. I took both hands and grabbed the middle of my thigh. That's how I move my legs these days, mostly by using my hands to pull them up, down and around things. So I grabbed my left leg, the one closest to the edge of the bed, pulled it up and then let it slip over the edge of the bed. It was uncomfortable enough to entice me to do the same with my right leg. That combination was awkward and clumsy enough to convince me to sit up, so I grabbed the walker from beside my bed and pulled myself into a sitting position.
I was up. After that it was a simple matter of schlumphing into the bathroom and back, then sliding on the bed over to the dresser to get socks and underwear, then grabbing a shirt and pants from the closet and tossing them over to the bed, and finally assembling the parts into a reasonable facsimile of a human being.
Today I feel better. I am still sad, partly because I just reread my entry about Bert. I've lost other friends over the years, good friends. I've had family pass, just as we all do. Yet thinking about Bert and what he lost really hits me sometimes, quite often in fact. But I am up, showered, shaved, having coffee and writing this entry.
You can't deal with sadness or depression all at once. You have to do it one leg at a time.
Yesterday morning I awoke feeling that way, swamped in the distress of my disease, wondering whether or not I should even bother to get out of bed. In reality every day when I wake up I start the day thinking about ALS. Every day begins with "Ah shit." Then I get past it and move into life and living. Yesterday morning there was no getting past it. I just wanted to stay in bed a feel sad, sliding deeply into my own personal slough of self-pity.
It doesn't work, you know, sliding down into self-pity. It may feel overwhelming at the moment but in reality is is a passing cloud, a moment when weakness takes over and blessings are hidden. To move onward all I need do is take the first step, do the first thing, think the first thought past the screen door of my depression.
Most mornings I think "I'll get up and make coffee. Then I will write and feel better." I know this is true because I do it so often. Yet on the morning in question I was lacking even that emotional strength. I didn't have the psychic energy to consider even getting out of bed. So instead I thought to myself, "All I have to do is swing one leg over the edge of the bed and the second one will follow, sort of." My legs don't work all that well so it's a bit of drama to get them moving.
I did it. I took both hands and grabbed the middle of my thigh. That's how I move my legs these days, mostly by using my hands to pull them up, down and around things. So I grabbed my left leg, the one closest to the edge of the bed, pulled it up and then let it slip over the edge of the bed. It was uncomfortable enough to entice me to do the same with my right leg. That combination was awkward and clumsy enough to convince me to sit up, so I grabbed the walker from beside my bed and pulled myself into a sitting position.
I was up. After that it was a simple matter of schlumphing into the bathroom and back, then sliding on the bed over to the dresser to get socks and underwear, then grabbing a shirt and pants from the closet and tossing them over to the bed, and finally assembling the parts into a reasonable facsimile of a human being.
Today I feel better. I am still sad, partly because I just reread my entry about Bert. I've lost other friends over the years, good friends. I've had family pass, just as we all do. Yet thinking about Bert and what he lost really hits me sometimes, quite often in fact. But I am up, showered, shaved, having coffee and writing this entry.
You can't deal with sadness or depression all at once. You have to do it one leg at a time.
Tuesday, 12 March 2013
Bert Menger
July 21, 1977 was my 22nd birthday. I very nearly did not make that birthday. My friend Bert didn't at all.
On Monday, July 18, 1977 I was at work at Jack Fraser Men's Wear. It was about 4:00 PM when Bert came by and said he and some other friends were going to go drinking "down by the Fraser River". We did that a fair bit. He asked if I wanted to go. I asked my boss if I could leave work early and my boss said "No, you have to finish your shift." So I told Bert I would come find him later, and I stayed until about 6:30 PM.
Bert and I were both in the Business Administration program in what was then Fraser Valley College, but is now the University of the Fraser Valley. Bert was from a fairly repressed Dutch Reformed background and was stretching his wings into the world. He had a hot car, a powered up green T-Bird I think, and we would often hang around together.
Bert liked to come around to the mobile home where I lived on Clayburn Road, just outside of Abbotsford. His family lived up in Clearbrook but he would often come down either after classes or for no reason at all and we would sit around, tell stories, make jokes, and drink a few beers. We got along well together. He had other friends, lots of them from his church and from school; I was just one of them.
So back to July 18, 1977. After work I went looking for Bert and the gang. I drove down to a number of the places where we would normally have been sitting by the banks of the Fraser River on a warm summer's night, drinking beer and laughing at bad jokes. Bert and the others were not to be found, in spite of my best efforts, so I went home. After all, I was working the next day.
On Tuesday I went to work and didn't hear from Bert. This was not unusual. We most often met up on weekends or when he would randomly show up at my trailer. Then Tuesday turned into Wednesday. By Wednesday I was wondering what was going on. Then I found out.
While at work on Wednesday the RCMP came by the offices of Fraser Valley College in Chilliwack where I was doing a summer work study program. They sat some of us down and told us that Bert, along with Jon and Evert Den Hertog and Leola Guliker had been shot, murdered by the Fraser River, their bodies dumped in the water. Bert's brother Eddie escaped, fleeing into the night with the sounds of gunshots and screaming.
A man named Walter Madsen had killed all four of my friends, and nearly got Eddie too. His motive was to steal Evert's truck to use in a plot to kidnap Margaret Trudeau or some madness like that. He was a former mental patient, a schizophrenic. He stole the truck and drove off into the night after dumping the bodies of Evert, Jon, Bert and Leola into the Fraser. The pickup truck was later found covered in blood in the parking lot of Pacific Centre in downtown Vancouver.
Bert and Evert were found that night after Eddie got to the police. Jon was found a few days later. Poor Leola's body wasn't found until it washed ashore at Point Grey the following sprint. I remember going to Bert's funeral, seeing his body. I saw that grey paleness and the washed damaged from the river, the cut on his lip. That image will never leave my mind.
I often think about the moments of chance, the events that turn an ordinary day into life and death. I think about Bert a lot. I wonder what his life would have been had he not been so cruelly killed. I wonder what might have happened had my boss said "Sure, take off".
I got to live. I may have a terminal illness but I have had an amazing life. Bert didn't get that chance.
On Monday, July 18, 1977 I was at work at Jack Fraser Men's Wear. It was about 4:00 PM when Bert came by and said he and some other friends were going to go drinking "down by the Fraser River". We did that a fair bit. He asked if I wanted to go. I asked my boss if I could leave work early and my boss said "No, you have to finish your shift." So I told Bert I would come find him later, and I stayed until about 6:30 PM.
Bert and I were both in the Business Administration program in what was then Fraser Valley College, but is now the University of the Fraser Valley. Bert was from a fairly repressed Dutch Reformed background and was stretching his wings into the world. He had a hot car, a powered up green T-Bird I think, and we would often hang around together.
Bert liked to come around to the mobile home where I lived on Clayburn Road, just outside of Abbotsford. His family lived up in Clearbrook but he would often come down either after classes or for no reason at all and we would sit around, tell stories, make jokes, and drink a few beers. We got along well together. He had other friends, lots of them from his church and from school; I was just one of them.
So back to July 18, 1977. After work I went looking for Bert and the gang. I drove down to a number of the places where we would normally have been sitting by the banks of the Fraser River on a warm summer's night, drinking beer and laughing at bad jokes. Bert and the others were not to be found, in spite of my best efforts, so I went home. After all, I was working the next day.
On Tuesday I went to work and didn't hear from Bert. This was not unusual. We most often met up on weekends or when he would randomly show up at my trailer. Then Tuesday turned into Wednesday. By Wednesday I was wondering what was going on. Then I found out.
While at work on Wednesday the RCMP came by the offices of Fraser Valley College in Chilliwack where I was doing a summer work study program. They sat some of us down and told us that Bert, along with Jon and Evert Den Hertog and Leola Guliker had been shot, murdered by the Fraser River, their bodies dumped in the water. Bert's brother Eddie escaped, fleeing into the night with the sounds of gunshots and screaming.
A man named Walter Madsen had killed all four of my friends, and nearly got Eddie too. His motive was to steal Evert's truck to use in a plot to kidnap Margaret Trudeau or some madness like that. He was a former mental patient, a schizophrenic. He stole the truck and drove off into the night after dumping the bodies of Evert, Jon, Bert and Leola into the Fraser. The pickup truck was later found covered in blood in the parking lot of Pacific Centre in downtown Vancouver.
Bert and Evert were found that night after Eddie got to the police. Jon was found a few days later. Poor Leola's body wasn't found until it washed ashore at Point Grey the following sprint. I remember going to Bert's funeral, seeing his body. I saw that grey paleness and the washed damaged from the river, the cut on his lip. That image will never leave my mind.
I often think about the moments of chance, the events that turn an ordinary day into life and death. I think about Bert a lot. I wonder what his life would have been had he not been so cruelly killed. I wonder what might have happened had my boss said "Sure, take off".
I got to live. I may have a terminal illness but I have had an amazing life. Bert didn't get that chance.
Monday, 11 March 2013
Road Trip
Okay, I can do a road trip. Sunday was my experiment with long distance driving solo in my truck. I drove down the Pincher Creek on Highway 2, then drove back up on the Cowboy Trail. Leaving at around 10:15 AM, in total it was a five hour drive but I stopped in Pincher Creek for an extended lunch. No beer, just coffee and seafood fettuccine. On the way back I detoured out to Bragg Creek, just for the heck of it.
I learned a few things about driving long haul on my own. First of all, and most importantly, I learned that I can do it. With the wheelchair crane, seat lift and hand controls I can, for the moment, independently get into my truck and hit the open road. I am still mobile; I can still go when and where I want.
The next thing I learned is that I need to use cruise control a lot more. For much of my driving life I have not used cruise control. I've always preferred the feeling of the gas pedal and brake, the sense of contact with the road and my vehicle, that awareness that comes through sensing the motion and pulse of the road beneath the wheels. Holding the hand control for the gas pedal for long periods of time is extremely tiring. I need to use the cruise control more often, switching to hand controls when road conditions demand it. If I have to do a long stretch with only hand operated acceleration, I will need to rest more often.
Thirdly, I learned I have to go slower. I need more time, if only a fraction of a second, to respond to changes on the road with the hand controls. Today I had an occasion to have to slow down rapidly. My instinctive reaction was to move my foot. Of course my foot didn't, and for a moment I had to think about what to do. Given that reaction, I need to be sure I have extra space and time when I need it.
Fourth, I learned that driving along with a coffee in hand is pretty much impossible. From this point on if I am driving, I have to stop, and I mean really stop, in order to enjoy a Timmies. I simply don't have enough hands to drive at the ready, be on the brake, and use the hand accelerator while holding a hot coffee. I didn't try it today; I imagined what I might do had that been the case. I didn't like the possibilities. So now a stop for coffee means parking the truck and enjoying it and then heading out again.
Finally, I learned that my days will be shorter. My own sense is that I could still do Calgary to Vancouver in a day. Now, though, it makes more sense than ever to take a little extra time, be a little safer, and get a bit of rest along the way. Being tired is an unnecessary risk; it means staying somewhere along the way, going slow and enjoying the ride.
Now, if someone comes along with me and shares the driving, so much the better.
I learned a few things about driving long haul on my own. First of all, and most importantly, I learned that I can do it. With the wheelchair crane, seat lift and hand controls I can, for the moment, independently get into my truck and hit the open road. I am still mobile; I can still go when and where I want.
The next thing I learned is that I need to use cruise control a lot more. For much of my driving life I have not used cruise control. I've always preferred the feeling of the gas pedal and brake, the sense of contact with the road and my vehicle, that awareness that comes through sensing the motion and pulse of the road beneath the wheels. Holding the hand control for the gas pedal for long periods of time is extremely tiring. I need to use the cruise control more often, switching to hand controls when road conditions demand it. If I have to do a long stretch with only hand operated acceleration, I will need to rest more often.
Thirdly, I learned I have to go slower. I need more time, if only a fraction of a second, to respond to changes on the road with the hand controls. Today I had an occasion to have to slow down rapidly. My instinctive reaction was to move my foot. Of course my foot didn't, and for a moment I had to think about what to do. Given that reaction, I need to be sure I have extra space and time when I need it.
Fourth, I learned that driving along with a coffee in hand is pretty much impossible. From this point on if I am driving, I have to stop, and I mean really stop, in order to enjoy a Timmies. I simply don't have enough hands to drive at the ready, be on the brake, and use the hand accelerator while holding a hot coffee. I didn't try it today; I imagined what I might do had that been the case. I didn't like the possibilities. So now a stop for coffee means parking the truck and enjoying it and then heading out again.
Finally, I learned that my days will be shorter. My own sense is that I could still do Calgary to Vancouver in a day. Now, though, it makes more sense than ever to take a little extra time, be a little safer, and get a bit of rest along the way. Being tired is an unnecessary risk; it means staying somewhere along the way, going slow and enjoying the ride.
Now, if someone comes along with me and shares the driving, so much the better.
Sunday, 10 March 2013
Stability
I was born under a wandering star. The need to move, to get out, to explore and experience the world around me has been ever present in my life. I often wonder if this is nature or nurture. As a child my father was in the Canadian Navy, so we started in Victoria, then went to Halifax, then came back to Victoria. After that it was East Vancouver, then Stave Falls, then West End Vancouver, then Burnaby, then back to Mission then over to Abbotsford, and a few brief stopovers in between.
Even within those cities we moved about. In all of my childhood, I never went to a school for more than three years and I went to as many as three different schools in one year. School change was normal, regular, persistent. In order to do thirteen years of schooling, I went to nine different schools.
All that moving taught me a few things. It taught me that there are new and interesting people and places everywhere in the world. It taught me not to fear change and newness, but to revel in it, to find the adventure in it. It taught me that foods taste different in different places, even in different neighbourhoods in the same city. It taught me that life is different for those who travel about.
Moving taught me the frailty of possessions. My dad used to say "Three moves, one fire; same thing". He was right. When you moved stuff got broke. But it was just stuff, unimportant, something you used up in life. Special care and consideration only applied to those few precious things that meant more than what they were.
As a young man I thought all this moving about was bad for a family. After all, my family was fractionated and spread about, filled with divorce, distress and drama. My family was mobile, constantly moving and relocating and finding new places to live. So I set about finding a woman who had never been any place beyond Abbotsford, a woman who was content and even demanded to stay in one place, a woman whose family could be found within a stone's throw of each other.
I pretty much raised my family primarily in one house. My wife's family was always nearby, ever present. My children were born in the same hospital as their mother and their aunts and uncles and cousins. They went to the same school as their grandmother, all of them. They all went to the same high school, had the same teachers, knew each other's friends.
Yet even with that, my children are spread all over the country. My daughter and her husband live in Victoria, another daughter and husband in Abbotsford, another in Toronto, and my son here with me in Calgary. They are all travelers, explorers, people who love the enchantment of far away places. They all know how to build a life no matter where they are.
So perhaps there is no right way or wrong way. Moving about teaches you things; staying put teaches you things. Stability isn't found in staying in one place, it's found inside of yourself, by staying open, true and aware. Stability is not found in where you live, it's found in how you live. Stability is not where you are, it's who you are. Having someone physically close is no indicator of emotional closeness.
Today I am going to get in my truck and go for a drive. I am going to wander. Something interesting will happen. That's the way it works.
Even within those cities we moved about. In all of my childhood, I never went to a school for more than three years and I went to as many as three different schools in one year. School change was normal, regular, persistent. In order to do thirteen years of schooling, I went to nine different schools.
All that moving taught me a few things. It taught me that there are new and interesting people and places everywhere in the world. It taught me not to fear change and newness, but to revel in it, to find the adventure in it. It taught me that foods taste different in different places, even in different neighbourhoods in the same city. It taught me that life is different for those who travel about.
Moving taught me the frailty of possessions. My dad used to say "Three moves, one fire; same thing". He was right. When you moved stuff got broke. But it was just stuff, unimportant, something you used up in life. Special care and consideration only applied to those few precious things that meant more than what they were.
As a young man I thought all this moving about was bad for a family. After all, my family was fractionated and spread about, filled with divorce, distress and drama. My family was mobile, constantly moving and relocating and finding new places to live. So I set about finding a woman who had never been any place beyond Abbotsford, a woman who was content and even demanded to stay in one place, a woman whose family could be found within a stone's throw of each other.
I pretty much raised my family primarily in one house. My wife's family was always nearby, ever present. My children were born in the same hospital as their mother and their aunts and uncles and cousins. They went to the same school as their grandmother, all of them. They all went to the same high school, had the same teachers, knew each other's friends.
Yet even with that, my children are spread all over the country. My daughter and her husband live in Victoria, another daughter and husband in Abbotsford, another in Toronto, and my son here with me in Calgary. They are all travelers, explorers, people who love the enchantment of far away places. They all know how to build a life no matter where they are.
So perhaps there is no right way or wrong way. Moving about teaches you things; staying put teaches you things. Stability isn't found in staying in one place, it's found inside of yourself, by staying open, true and aware. Stability is not found in where you live, it's found in how you live. Stability is not where you are, it's who you are. Having someone physically close is no indicator of emotional closeness.
Today I am going to get in my truck and go for a drive. I am going to wander. Something interesting will happen. That's the way it works.
Saturday, 9 March 2013
Anna Says...
A while ago I asked if any of you wanted to be a guest blogger one day. Anna Turner, a force of nature with whom I work at the CBE, took me up. Just so you know, Anna has faced her own challenges, risen above them and lives an amazing life. She runs marathons! She is determined, lives her beliefs and is never afraid to do the right things and make the hard decisions. You can find Anna's blog at http://www.annasantidotes.com/. Here is what Anna has to say...
So Richard McBride...the name means something to you I
know. I am going to share what it means
to me. I will start and end with two
quotes that remind me so much of Richard and his legacy to us, I wonder if
anyone else will agree with my quotes “Courage is being scared to death, but
saddling up anyway.” ~ John Wayne
To me when I first met him, it meant stubborn PM who
accomplished things. Richard has to
learn by feel not by example in most cases; the great news is he is a quick
study. Then when I took the time I learned more about the man behind the
business, and found him to be witty and full of knowledge on many topics.
I learned that first and foremost he loves and adores his
children, and believes that his best for them is not good enough. I have a hard time believing Richard’s best
is not good enough. I learned he loves to be on the ocean sailing smelling the
salt air. I learned he is passionate in
his love for him Mom and brothers, and tells tales (maybe they are yarns) of
the mischief he has gotten himself into as a youngster and as a grown up.
He loves a great sip or two of scotch and makes his own
wine. He hunts, likes road trips and is
a world traveller. He is at the end of a
fulfilling career which he will miss as will the colleagues and the friends he
has made along this path.
He is determined which is apparent in the work he has put
into to pimping out his ride so he can drive for as long as he can. He is a fundraiser, and he has a goal http://richardislivingwithals.blogspot.ca/2013/02/my-goal.html
if he will let me I will run while he rolls. He is honest, seeks knowledge and has shared his life openly
and truthfully with anyone who wants to know. He has made missteps and he has
made successful leaps. He gives credit
where credit is due.
I guess in the end I know very little about the man, but the
more I read, the more I learn, the more I learn the more I respect him as
person, and believe he has made me and many others in his path better people. I am proud of the opportunity I have had to get to know the
man, and add him to a list of awesome friends, and I wish him peace and joy
throughout his struggle. I hope you have
happy trails and tales to share with many for as long as you can.
When I think of Richard’s passing and leaving us behind for
somewhere better I think of this quote from Dr. Elisabeth Kubler-Ross “When I
die I'm going to dance first in all the galaxies...I'm gonna play and dance and
sing.”
Friday, 8 March 2013
Tired Arms
It is the end of the day. I am writing this blog in advance. My arms are tired. My shoulders are tired. My hands are tired. It happens a lot to me these days; my upper body gets tired after a long day of wheeling about.
I had a conversation with another wheelchair denizen the other day. He is a complete paraplegic; he has no ability to move anything below his waist. He is 100% in a wheelchair. I was asking him how he managed. I wanted to know if he could give me some insight into where I was headed. His comment was that "it's like being on your feet all day". Only you use your hands.
When I was in the ALS clinic recently I asked the doctor about why my arms were so tired. He said I showed normal strength in my arms and hands. So I asked him about why my hands "went to sleep" so easily and why they got tingly so often. His comment? "Carpal tunnel syndrome".
In other words being in a wheelchair causes repetitive stress injury. Pushing yourself around all day causes your arms to hurt and your hands to hurt. It causes nerves to wear and tire. It's something you don't find out until you spend all day pushing yourself around in a wheelchair. It's another side affect of ALS, another ancillary benefit.
It's really frustrating. Even with this exercise I don't seem to be gaining any strength in my arms. They are not getting bigger, just tireder. I hate this nonsense. It's just hard. I am guessing that this is how its gonna go, how my disease will progress. Lots of work, limited reward.
That's one of the reasons I am leaving my job. It tires me out too much. I expect to sleep more and wheel around less. It may seem boring to you, but I am looking forward to a day when I can sleep until I want to, get up when I want to, have no responsibilities or plans, and go to bed when I am tired.
Of course, after about a week I will be bored, back looking for something to do, a reason to get out of bed.
I had a conversation with another wheelchair denizen the other day. He is a complete paraplegic; he has no ability to move anything below his waist. He is 100% in a wheelchair. I was asking him how he managed. I wanted to know if he could give me some insight into where I was headed. His comment was that "it's like being on your feet all day". Only you use your hands.
When I was in the ALS clinic recently I asked the doctor about why my arms were so tired. He said I showed normal strength in my arms and hands. So I asked him about why my hands "went to sleep" so easily and why they got tingly so often. His comment? "Carpal tunnel syndrome".
In other words being in a wheelchair causes repetitive stress injury. Pushing yourself around all day causes your arms to hurt and your hands to hurt. It causes nerves to wear and tire. It's something you don't find out until you spend all day pushing yourself around in a wheelchair. It's another side affect of ALS, another ancillary benefit.
It's really frustrating. Even with this exercise I don't seem to be gaining any strength in my arms. They are not getting bigger, just tireder. I hate this nonsense. It's just hard. I am guessing that this is how its gonna go, how my disease will progress. Lots of work, limited reward.
That's one of the reasons I am leaving my job. It tires me out too much. I expect to sleep more and wheel around less. It may seem boring to you, but I am looking forward to a day when I can sleep until I want to, get up when I want to, have no responsibilities or plans, and go to bed when I am tired.
Of course, after about a week I will be bored, back looking for something to do, a reason to get out of bed.
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