Most nights when I go to bed, especially when I am alone, I ask myself how I would feel if I didn't wake up in the morning. Most nights, I reply to myself that I am okay with that. I am not happy about it. I am not willing to take action to make it happen. I am, however, ready for it.
Last night when I went to bed, I asked myself that question, if I wanted to get up tomorrow morning. The answer surprised me; I said to myself "No. I don't want to die tonight. I'm just not ready. I don't want to go." It was unusual for me, different to feel this way. Usually I only escape those thoughts when Katherine is with me, when she is next to me.
I know why I thought this last night. Yesterday evening was the annual charity auction for the Calgary Hospice at the Can n Fiddle Pub. Of course I was there. But something else happened last night. Last night I was able to help in the setup for the auction. Certainly all I could do was hold a box and sort posters, but I contributed my time. I sorted. When asked, I produced the appropriate small poster for an item. That was all, it was nothing big.
Except that it was gigantic for me. I felt helpful. I felt like I could do something to make a difference, no matter how small, how insignificant. I don't mean an emotional difference; I know that happens every day. I mean a practical, real, substantive difference. Not money; there are plenty of people who make that contribution. I contributed with myself, from myself, of myself. It's hard to express the satisfaction and fulfillment that gave me.
I come from a family of "doers". We were raised with a version of help which meant getting in there, getting your hands dirty, picking up the heavy end, carrying the biggest load. I was raised in a family where helping someone had little to do with words. And since we had no money, there was little in that regard either. Helping, making a contribution, making a difference was all about action, physical action. That's why I went to bed happy.
Saturday, 14 November 2015
Friday, 13 November 2015
The Price
There's a price for everything, and everything has its price.
It's an expression I have used for many years, a recognition that there is a cost to everything, not just an economic cost, a cost in terms of trade-offs with other things, a cost in terms of impact on other people, a cost in terms of consequence. Every change, every decision, every act comes with an impact. Nothing is free, a lesson I learned once again yesterday.
We've made changes to my wheelchair to help get rid of the constant pain in my tailbone. There are two specific changes; a hard pad has been added to my wheelchair cushion to stiffen it, and a solid back has been added to my wheelchair to keep my back straight and upright. The solid pad in the cushion makes it heavier, more challenging to lift off of the chair when I get into the truck. The stiff back means I cannot lean back or slouch back in my wheelchair.
The inability to lean backwards in my chair affects two things fairly directly. First, it means I cannot lean back when I pee into my jug. It may not seem like much, but that L-shaped bend at my hips and waist means the pathway from bladder to exit point takes a sharp turn along the way, restricting the flow of things, slowing things down, making the effort more difficult, messier, and longer.
The second challenge is that I can no longer change my center of balance. This is critical when going downhill facing frontwards. I need to lean back to shift my center of balance so I don't tip over frontwards. I can no longer do this, and yesterday it almost caused disaster.
We were leaving an office where I had gone to pay a bill. The cement sidewalk had a sloped ramp to the asphalt pavement. The joint between them was cracked, a sufficient crack to bring my wheelchair to a sudden stop at the bottom. Thanks to my stiff L-shaped position, my center of balance was too far forward when my chair hit that crack. I pitched forward, nearly diving completely out of my chair. Fortunately I was able to hold on just long enough for Katherine to grab my shirt-back and arrest the fall. I stayed in the chair.
Apparently the price of this new seat cushion, the one I got to help with my tailbone, is that I must now go down all but the smallest of slopes facing backwards. If the transition is wide enough, like where an alley meets a roadway, I can go frontwards, but on a long angle, eliminating the worst of the slope. You give, you get. That's how it works.
It's an expression I have used for many years, a recognition that there is a cost to everything, not just an economic cost, a cost in terms of trade-offs with other things, a cost in terms of impact on other people, a cost in terms of consequence. Every change, every decision, every act comes with an impact. Nothing is free, a lesson I learned once again yesterday.
We've made changes to my wheelchair to help get rid of the constant pain in my tailbone. There are two specific changes; a hard pad has been added to my wheelchair cushion to stiffen it, and a solid back has been added to my wheelchair to keep my back straight and upright. The solid pad in the cushion makes it heavier, more challenging to lift off of the chair when I get into the truck. The stiff back means I cannot lean back or slouch back in my wheelchair.
The inability to lean backwards in my chair affects two things fairly directly. First, it means I cannot lean back when I pee into my jug. It may not seem like much, but that L-shaped bend at my hips and waist means the pathway from bladder to exit point takes a sharp turn along the way, restricting the flow of things, slowing things down, making the effort more difficult, messier, and longer.
The second challenge is that I can no longer change my center of balance. This is critical when going downhill facing frontwards. I need to lean back to shift my center of balance so I don't tip over frontwards. I can no longer do this, and yesterday it almost caused disaster.
We were leaving an office where I had gone to pay a bill. The cement sidewalk had a sloped ramp to the asphalt pavement. The joint between them was cracked, a sufficient crack to bring my wheelchair to a sudden stop at the bottom. Thanks to my stiff L-shaped position, my center of balance was too far forward when my chair hit that crack. I pitched forward, nearly diving completely out of my chair. Fortunately I was able to hold on just long enough for Katherine to grab my shirt-back and arrest the fall. I stayed in the chair.
Apparently the price of this new seat cushion, the one I got to help with my tailbone, is that I must now go down all but the smallest of slopes facing backwards. If the transition is wide enough, like where an alley meets a roadway, I can go frontwards, but on a long angle, eliminating the worst of the slope. You give, you get. That's how it works.
Thursday, 12 November 2015
Wheelchair Changes
For the last several months I have been dealing with pain at the base of my spine, in my tailbone. I've also had a lot of trouble with the muscles in my lower back. I've generally written this off as a side effect of life in a wheelchair. I mentioned this in my last ALS clinic visit and the occupational therapist recommended a visit with the folks from the Seating Clinic. They specialize in issues like this.
I met with them on Tuesday at Medichair, my wheelchair supplier. There were two nice young ladies, one an occupational therapist and the other a seating specialist. The sales manager for Medichair and his new trainee were also there, observing and ready to help with parts. The ladies from the Seating Clinic took my picture, measured me, measured my wheelchair with me in it, measured my wheelchair with me not in it, discussed this situation, then said I needed a harder base to stiffen the bottom of my wheelchair cushion and a hard back for my wheelchair.
I asked why.
Apparently, as I have been losing strength in my core and back muscles, I have been increasing my natural slouch. I have always been a lazy sitter, never one for the straight-backed approach of my Dad. I can remember, even as a child, him telling me to sit up straight. The instruction failed to take hold. Now that I can no longer sit up straight of my own accord, even if I wanted to, it puts increasing pressure on my tailbone and lower back.
This would be no problem in my healthy self. I wouldn't be sitting all the time. Now that I am, there is a constant pressure on my tailbone and the failing muscles in my lower back. This means pain, unrelenting pain, in my tailbone area. So I need these changes to my wheelchair to improve my posture, to help take some of the pressure off my tailbone and transfer it to my almost completely flaccid gluteous maximus, also known as my ass.
We've put these changes in place. It doesn't seem to have made a difference in the first couple of days. My tailbone hurts as bad as ever. My lower back put me in terrible pain when I moved about this morning; it's not so bad now that I am out of bed. They say it might take a week or two for me to get used to the new positioning. I think I can hold out that long, especially if I spend more time in bed and less time in my chair. That seems like a good plan.
I met with them on Tuesday at Medichair, my wheelchair supplier. There were two nice young ladies, one an occupational therapist and the other a seating specialist. The sales manager for Medichair and his new trainee were also there, observing and ready to help with parts. The ladies from the Seating Clinic took my picture, measured me, measured my wheelchair with me in it, measured my wheelchair with me not in it, discussed this situation, then said I needed a harder base to stiffen the bottom of my wheelchair cushion and a hard back for my wheelchair.
I asked why.
Apparently, as I have been losing strength in my core and back muscles, I have been increasing my natural slouch. I have always been a lazy sitter, never one for the straight-backed approach of my Dad. I can remember, even as a child, him telling me to sit up straight. The instruction failed to take hold. Now that I can no longer sit up straight of my own accord, even if I wanted to, it puts increasing pressure on my tailbone and lower back.
This would be no problem in my healthy self. I wouldn't be sitting all the time. Now that I am, there is a constant pressure on my tailbone and the failing muscles in my lower back. This means pain, unrelenting pain, in my tailbone area. So I need these changes to my wheelchair to improve my posture, to help take some of the pressure off my tailbone and transfer it to my almost completely flaccid gluteous maximus, also known as my ass.
We've put these changes in place. It doesn't seem to have made a difference in the first couple of days. My tailbone hurts as bad as ever. My lower back put me in terrible pain when I moved about this morning; it's not so bad now that I am out of bed. They say it might take a week or two for me to get used to the new positioning. I think I can hold out that long, especially if I spend more time in bed and less time in my chair. That seems like a good plan.
Wednesday, 11 November 2015
Remembrance
It's Remembrance Day here in Canada today. In the US, it's Veteran's Day. Two very different memorials. In Canada we take time to remember the men and women who have died in the service of their country. In the US, they take the day to remember all those who have served in their military. Yet both of these memorials honour those who made that most basic of commitments, to offer their lives up in the service of a nation.
Both of my grandfathers fought in the First World War, as did my great-grandfather and my great uncle. My Uncle Adam fought in the Second World War. My Dad served in the Korean War. Two of my brothers served in the peacetime Canadian Navy. My nephew served in both the US Air Force and the US Army, serving his country over in Iraq. I am well acquainted with the process and impact of military service, although I have not served myself.
I struggle with war as a notion. I am certain it happens; there is no struggle within me as to the fact of war. My struggle lies in questioning the value of it. It is a final act of failed diplomacy, a last step where one nation or tribe or group seeks to impose its will, its values, on another nation, tribe, or group. As a student of history, I read much of what has transpired in the history of war, and ask myself what difference it really made.
This wondering about the notion of war in no way offers disrespect to those who have made the ultimate sacrifice, or to those who have served and survived. The fact of war means we will always have those amongst us who fight, those who are willing to die for our ideals as a nation. We did not ask for Hitler, nor did we ask for ISIS. Whatever global conditions bring these belligerents to fruition, when they arrive, nations of conscience must respond.
I simply wonder if it will ever be possible to live in a world where mankind seeks to use methods other than war to resolve disputes. We are a fractious species, prone to violence, willing to take up arms in ever increasing efficiency. It seems to be a basic in our nature, that we seek to kill one another in order to impose our will.
War, it seems, will ever be with us. Young men and women will ever be placed in the line of fire in order to serve their country's will. Civilians will ever die, victims of collateral damage. Economies, societies, cultures, whole nations will die out as a result. It seems such a shame, that this is who we are. Surely one day we will reach the point where Remembrance Day will be just that, a moment of memory.
Just not today. For me, I will remember. I will remember my grandfather, not as a member of the Old Contemptibles, but as a wonderful man who made my life better. I will remember my uncle, not as a soldier of fortune, but as the man who gave stuffed animals to my children and made them laugh. I will remember my Dad, not as a Korean war veteran, but as the man who gave me life, taught me much, left too soon. My remembrance will be as much about peace as war.
It cannot be so for all of us. Some are lost. Some return so damaged as to be lost all over again. For some, remembrance of the losses in battle are all too real. For those men and women, remembrance is fraught with pain and difficulty. I honour them, and look to a day when war will be a memory.
Both of my grandfathers fought in the First World War, as did my great-grandfather and my great uncle. My Uncle Adam fought in the Second World War. My Dad served in the Korean War. Two of my brothers served in the peacetime Canadian Navy. My nephew served in both the US Air Force and the US Army, serving his country over in Iraq. I am well acquainted with the process and impact of military service, although I have not served myself.
I struggle with war as a notion. I am certain it happens; there is no struggle within me as to the fact of war. My struggle lies in questioning the value of it. It is a final act of failed diplomacy, a last step where one nation or tribe or group seeks to impose its will, its values, on another nation, tribe, or group. As a student of history, I read much of what has transpired in the history of war, and ask myself what difference it really made.
This wondering about the notion of war in no way offers disrespect to those who have made the ultimate sacrifice, or to those who have served and survived. The fact of war means we will always have those amongst us who fight, those who are willing to die for our ideals as a nation. We did not ask for Hitler, nor did we ask for ISIS. Whatever global conditions bring these belligerents to fruition, when they arrive, nations of conscience must respond.
I simply wonder if it will ever be possible to live in a world where mankind seeks to use methods other than war to resolve disputes. We are a fractious species, prone to violence, willing to take up arms in ever increasing efficiency. It seems to be a basic in our nature, that we seek to kill one another in order to impose our will.
War, it seems, will ever be with us. Young men and women will ever be placed in the line of fire in order to serve their country's will. Civilians will ever die, victims of collateral damage. Economies, societies, cultures, whole nations will die out as a result. It seems such a shame, that this is who we are. Surely one day we will reach the point where Remembrance Day will be just that, a moment of memory.
Just not today. For me, I will remember. I will remember my grandfather, not as a member of the Old Contemptibles, but as a wonderful man who made my life better. I will remember my uncle, not as a soldier of fortune, but as the man who gave stuffed animals to my children and made them laugh. I will remember my Dad, not as a Korean war veteran, but as the man who gave me life, taught me much, left too soon. My remembrance will be as much about peace as war.
It cannot be so for all of us. Some are lost. Some return so damaged as to be lost all over again. For some, remembrance of the losses in battle are all too real. For those men and women, remembrance is fraught with pain and difficulty. I honour them, and look to a day when war will be a memory.
Tuesday, 10 November 2015
Odd Moments
You get some odd moments in living with ALS. Yesterday offered me a great example. Don't worry; I'll get there. Nothing so befits me as to take a short story and make it long.
Prior to being diagnosed with ALS, I lived in Abbotsford, BC. Changes in my marriage meant I had now committed to living in Calgary. Along the way I had gotten a cell phone from Wind, one with an Alberta number. This was in addition to my BC number; that was my business phone so I wanted to keep it. My BC cell phone was with Rogers, a different cell service provider.
When I was initially diagnosed, I kept both phones for a while. I wasn't sure how this was going to go, so I wanted to keep a foot in both camps. As it turned out, things went quickly over the first few months. I had to stop working in March of 2013, so I did not need my Rogers cell phone. I gave them a call, explained the circumstances, and asked to cancel my BC phone. They replied "Sure. That will be $400 to cancel your contract." I explained again, but they were unmoved, and un-moving. So I simply turned off the phone and never paid them. It was easy. I didn't care about any credit rating or harassment that would follow.
So for almost three years they have been trying to collect. First it was Rogers themselves through their credit group. Then Rogers sold the unpaid bill to a collections agency. They call me on an almost daily basis of late, notwithstanding that I have explained my situation to any number of people at Credit Risk Management, the collection agency. I mostly don't pick them up, but sometimes I do, just so I can explain again.
Yesterday I picked up the call. The young lady on the other end of the line said she wanted to discuss a financial matter regarding my Rogers bill. I told her I was terminally ill, unemployed, living off of a disability pension, and broke. Rogers was never going to get paid. She listened to my story and said she would update the file. I pointed out that several other people had said that too, and that I would be happy to tell my story again when Credit Risk Management called me the next time.
She didn't really know what to say after that. So she said what might be the oddest thing possible. She said "Thank you for the information. Good bye. And I hope you feel better soon." The emphasis is fine; for her I suspect it was a throw away line.
My reply, just as she was about to click off? "There is no feel better soon. Good bye."
Prior to being diagnosed with ALS, I lived in Abbotsford, BC. Changes in my marriage meant I had now committed to living in Calgary. Along the way I had gotten a cell phone from Wind, one with an Alberta number. This was in addition to my BC number; that was my business phone so I wanted to keep it. My BC cell phone was with Rogers, a different cell service provider.
When I was initially diagnosed, I kept both phones for a while. I wasn't sure how this was going to go, so I wanted to keep a foot in both camps. As it turned out, things went quickly over the first few months. I had to stop working in March of 2013, so I did not need my Rogers cell phone. I gave them a call, explained the circumstances, and asked to cancel my BC phone. They replied "Sure. That will be $400 to cancel your contract." I explained again, but they were unmoved, and un-moving. So I simply turned off the phone and never paid them. It was easy. I didn't care about any credit rating or harassment that would follow.
So for almost three years they have been trying to collect. First it was Rogers themselves through their credit group. Then Rogers sold the unpaid bill to a collections agency. They call me on an almost daily basis of late, notwithstanding that I have explained my situation to any number of people at Credit Risk Management, the collection agency. I mostly don't pick them up, but sometimes I do, just so I can explain again.
Yesterday I picked up the call. The young lady on the other end of the line said she wanted to discuss a financial matter regarding my Rogers bill. I told her I was terminally ill, unemployed, living off of a disability pension, and broke. Rogers was never going to get paid. She listened to my story and said she would update the file. I pointed out that several other people had said that too, and that I would be happy to tell my story again when Credit Risk Management called me the next time.
She didn't really know what to say after that. So she said what might be the oddest thing possible. She said "Thank you for the information. Good bye. And I hope you feel better soon." The emphasis is fine; for her I suspect it was a throw away line.
My reply, just as she was about to click off? "There is no feel better soon. Good bye."
Monday, 9 November 2015
I Will Remember
It must be terribly depressing to read my blog sometimes. I must sound like the worst sad sack in the world, with everything going wrong and nothing going right. To read, day after day, about how my illness is changing my life, how it is destroying me must make it impossible to keep up with the level of distress. I want people to know that it's not always bad, it's not always misery, it's not always pain.
While I may wake up in pain this morning, I wake up with Katherine cuddling in next to me, smiling at me, asking me how I slept. You can't get much better than that. While I struggled to get into my wheelchair, onto my toilet, into my shower, I did so in lovely apartment, in a terrific city, in a country blessed beyond measure. My country actually sends someone into my home every Monday, Wednesday, and Friday to make sure I am well cared for and clean.
While I may be in a wheelchair, I live in world where that is not supposed to be a real handicap, where businesses and governments are required to make it possible for me to live as full a life as anyone else. My wheelchair doesn't have to limit me, not does it have to define me. I live in a place where being in a wheelchair is not a death sentence, even when it is a life sentence.
Today I awoke to the snow falling outside, leaving an icing sugar dusting on the needles of the tree outside my window. The cars rushing by on the street below turned that snow into a squishing mulch, announcing their coming and going. The boulevard across the street from me is covered, with only the tips of the longest blades of grass poking through the thin skiff of snow.
Here I am, warm, dry, safe inside from this winter chill, a chill which will stay until April. I get to watch it all from my window. If I want, I can even go outside, and come back in when I get too cold. I have choices. I have freedom. I am fortunate. It's hard not to get depressed with this illness. It's hard to remember how lucky I am. Today, I will remember.
While I may wake up in pain this morning, I wake up with Katherine cuddling in next to me, smiling at me, asking me how I slept. You can't get much better than that. While I struggled to get into my wheelchair, onto my toilet, into my shower, I did so in lovely apartment, in a terrific city, in a country blessed beyond measure. My country actually sends someone into my home every Monday, Wednesday, and Friday to make sure I am well cared for and clean.
While I may be in a wheelchair, I live in world where that is not supposed to be a real handicap, where businesses and governments are required to make it possible for me to live as full a life as anyone else. My wheelchair doesn't have to limit me, not does it have to define me. I live in a place where being in a wheelchair is not a death sentence, even when it is a life sentence.
Today I awoke to the snow falling outside, leaving an icing sugar dusting on the needles of the tree outside my window. The cars rushing by on the street below turned that snow into a squishing mulch, announcing their coming and going. The boulevard across the street from me is covered, with only the tips of the longest blades of grass poking through the thin skiff of snow.
Here I am, warm, dry, safe inside from this winter chill, a chill which will stay until April. I get to watch it all from my window. If I want, I can even go outside, and come back in when I get too cold. I have choices. I have freedom. I am fortunate. It's hard not to get depressed with this illness. It's hard to remember how lucky I am. Today, I will remember.
Sunday, 8 November 2015
Motivation
Personal motivation is one of my most difficult challenges. When it becomes difficult to do everything, you don't really want to do anything at all. When it's tough to sit up in bed, it's easier just to stay there. When getting dressed leaves you in a full sweat, it's easier to stay undressed. When wheeling from your bedroom to the bathroom wears out your arms, it's easier to stay out of there. Unfortunately this is where the healthy part of my body cuts in; most days I have to go to the bathroom whether I like it or not.
I've always been self-motivated. It hasn't always been perfect. Like all of us, I've had days where all I've been motivated to do is stay in bed. Those were rare, usually the result of a lack of focus or lack of anything in particular to do. Once I had a target, a goal, a thing to do, getting up in the morning was easy. Achieving was easy. Now that I have no goal, no reason to get up, the difficulties in the process make it a lot easier to tell myself not to bother.
Yet here I am, up, awake, typing. Today my daughter Kate is coming for dinner. Katherine will be here too, along with my friend Brad and most likely Kate's friend Margaret. We are doing an oven roast with some baby potatoes and asparagus on the side. Preparing this meal was my motivation for getting out of bed, at 2:00 PM today. Oh, and I didn't want Katherine to catch me still sleeping when she gets here. Fear is a great motivator too.
Once again I remind myself that the biggest part of being alive is getting out of bed in the morning. George Burns, that great American comedian, once said that he started his day by reading the obituaries. If his name wasn't there, he had a cigar and got on with his day. This gig sure ain't easy, but I am here, still breathing. I suppose that, and having company for dinner, is enough motivation for today.
I've always been self-motivated. It hasn't always been perfect. Like all of us, I've had days where all I've been motivated to do is stay in bed. Those were rare, usually the result of a lack of focus or lack of anything in particular to do. Once I had a target, a goal, a thing to do, getting up in the morning was easy. Achieving was easy. Now that I have no goal, no reason to get up, the difficulties in the process make it a lot easier to tell myself not to bother.
Yet here I am, up, awake, typing. Today my daughter Kate is coming for dinner. Katherine will be here too, along with my friend Brad and most likely Kate's friend Margaret. We are doing an oven roast with some baby potatoes and asparagus on the side. Preparing this meal was my motivation for getting out of bed, at 2:00 PM today. Oh, and I didn't want Katherine to catch me still sleeping when she gets here. Fear is a great motivator too.
Once again I remind myself that the biggest part of being alive is getting out of bed in the morning. George Burns, that great American comedian, once said that he started his day by reading the obituaries. If his name wasn't there, he had a cigar and got on with his day. This gig sure ain't easy, but I am here, still breathing. I suppose that, and having company for dinner, is enough motivation for today.
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