It's video day today. A video crew is arriving shortly to help me put together a five to ten minute video of my life with ALS.
A couple of months ago, a PALS in one of my online groups asked for volunteers to put together a short presentation, perhaps five to ten minutes, of what ALS has done to their lives. The videos were for use at the Rock Out ALS Concert in Woodinville, Washington. It's a fundraiser for ALS research. Stephanie, the PALS asking, said she would prefer a live body, but that would be impossible for me, thanks to a combination of competing events and lack of money for the trip down to Seattle. So I offered to do a video.
My original plan had been to do a slide presentation with a voice-over, something I could easily put together on my laptop. I have plenty of pictures from before ALS, digital photos taken over the last 15 years of various family vacations, business trips, and home life. And I certainly have pictures of my post ALS life, some as recent as the last Betty's Run.
Then CTV came to interview me about Physician Assisted Dying. I asked the cameraman if he knew anyone who might do a video or slide project with me. I described what Stephanie was looking for, and he volunteered to do it himself, with another videographer. Suddenly my plans for a slide show changed to a short film! Well, I am not expecting that much, but with young film-makers, you never know.
So they will arrive shortly. Katherine and I will serve them hamburgers and salad for lunch; the first rule of working with volunteers is to feed them. We'll discuss the project and decide what we want to put together, then we will start taking video. Tomorrow we will take more video, most likely while homecare is here and more after that. Then I will wait a couple of weeks for post-production and voila! I'm ready for my close-up, Mr. DeMille.
Thursday, 30 June 2016
Wednesday, 29 June 2016
It Sucks To Be Me
I was sitting in front of the elevator the other day, sitting in the hall, sitting in my wheelchair. I hadn't pushed the button. I had gone somewhere, but I am not sure where I went. As I sat there, my mind vacant for the merest of moments, this wave of sadness washed over me, flooding my emotions with sorrow and despair. It was palpable, physical. It weighed, as if someone had soaked a blanket in my own tears, then laid that blanket across my shoulders.
I was feeling grief for my losses. I was feeling sorry for myself. This, however, was not the self-pity and indulgent feeling sorry, it's more like sorrow than sorry. This was more of a grief stricken feeling, a feeling of complete loss. I wanted to cry, but I could not. It seems my tears have all left me of late. I have not cried for some time. Perhaps I need to, but I cannot.
This is not the first time this has happened to me. It happens on a regular basis, regardless of what else is going on in my life, good or bad. It happens almost every time I allow my mind to go vacant, to wander off somewhere without control or focus. The feeling the other day was stronger than most, but it was a familiar feeling, something I knew and will know again.
I am pretty sure I understand why this happens. It happens because my mind is empty of active thought. When that happens, my background emotions take over, and they, pretty much, are but one these days. What I feel the most is sorrow and grief. This background base emotion is what fills in the blank spaces of my psyche when nothing else is active. My foreground emotions are still there, the feelings of happiness with my life, the feelings of excitement and joy. I still feel those things. But I know for sure that my fallback emotion will be, until this is all over, sorrow and grief.
There's not much I can do about this. It is what it is. I wish I could cry or do something to offload these feelings. But I cannot. I'm stuck with them, just like I am stuck with ALS. It really does suck to be me.
I was feeling grief for my losses. I was feeling sorry for myself. This, however, was not the self-pity and indulgent feeling sorry, it's more like sorrow than sorry. This was more of a grief stricken feeling, a feeling of complete loss. I wanted to cry, but I could not. It seems my tears have all left me of late. I have not cried for some time. Perhaps I need to, but I cannot.
This is not the first time this has happened to me. It happens on a regular basis, regardless of what else is going on in my life, good or bad. It happens almost every time I allow my mind to go vacant, to wander off somewhere without control or focus. The feeling the other day was stronger than most, but it was a familiar feeling, something I knew and will know again.
I am pretty sure I understand why this happens. It happens because my mind is empty of active thought. When that happens, my background emotions take over, and they, pretty much, are but one these days. What I feel the most is sorrow and grief. This background base emotion is what fills in the blank spaces of my psyche when nothing else is active. My foreground emotions are still there, the feelings of happiness with my life, the feelings of excitement and joy. I still feel those things. But I know for sure that my fallback emotion will be, until this is all over, sorrow and grief.
There's not much I can do about this. It is what it is. I wish I could cry or do something to offload these feelings. But I cannot. I'm stuck with them, just like I am stuck with ALS. It really does suck to be me.
Tuesday, 28 June 2016
Being Me
Why do people insist that I be different so that they can be more comfortable? It's as if my personality, my behaviour, my way of being is bad, and they are the arbitrators of bad and good. They seem to think that their way is the right way, and my way is the wrong way. What really irks me is when they get angry if I don't conform to their way of thinking and acting.
It happens a lot, not just to me but to all of us. We are constantly bombarded with media messages and personal signals that tell us we are inadequate, unworthy, unlovable. We hear it from our social institutions, that we must conform to a code of behaviour, a way of action which makes others feel comfortable, as if their right to feel comfort, to not be offended, supersedes my right to be myself, to be who and what I am.
By no means am I suggesting we have a right to be rude. In all things there should be a boundary of politeness. That boundary should go both ways. If you don't like how I look, don't look at me. If you don't like how I behave in my own home, don't come to visit me. If you don't like what I eat, don't eat it. Don't sneer at me because I sleep until noon. Don't get angry with me because I stay up late. Don't point at me because I am in a wheelchair. I am who and what I am, nothing more, nothing less.
If you see someone in a hijab, judge not the hijab but the actions of the person wearing it. If you see someone in a dirty shirt, judge not that they have a different perception of clean, just don't sit with them in the eating area, or better yet, see if you can get past the shirt to see the man underneath. If you see a dark-skinned man with a beard, don't think "terrorist", think "Jesus", or better yet, think about what their life must be like, and watch for what kind of person they are.
Don't judge based on your view of who I should be. I reserve the right to believe what I believe, even if it differs from what you believe. I reserve the right, and freedom, to be an individual. I reserve the right to have opinions which differ, approaches which differ, responses which differ. I reserve the right to make mistakes and errors, to try only to fail, to not see what you see, to not hear what you hear. I reserve the right to be me, flaws and all.
It happens a lot, not just to me but to all of us. We are constantly bombarded with media messages and personal signals that tell us we are inadequate, unworthy, unlovable. We hear it from our social institutions, that we must conform to a code of behaviour, a way of action which makes others feel comfortable, as if their right to feel comfort, to not be offended, supersedes my right to be myself, to be who and what I am.
By no means am I suggesting we have a right to be rude. In all things there should be a boundary of politeness. That boundary should go both ways. If you don't like how I look, don't look at me. If you don't like how I behave in my own home, don't come to visit me. If you don't like what I eat, don't eat it. Don't sneer at me because I sleep until noon. Don't get angry with me because I stay up late. Don't point at me because I am in a wheelchair. I am who and what I am, nothing more, nothing less.
If you see someone in a hijab, judge not the hijab but the actions of the person wearing it. If you see someone in a dirty shirt, judge not that they have a different perception of clean, just don't sit with them in the eating area, or better yet, see if you can get past the shirt to see the man underneath. If you see a dark-skinned man with a beard, don't think "terrorist", think "Jesus", or better yet, think about what their life must be like, and watch for what kind of person they are.
Don't judge based on your view of who I should be. I reserve the right to believe what I believe, even if it differs from what you believe. I reserve the right, and freedom, to be an individual. I reserve the right to have opinions which differ, approaches which differ, responses which differ. I reserve the right to make mistakes and errors, to try only to fail, to not see what you see, to not hear what you hear. I reserve the right to be me, flaws and all.
Monday, 27 June 2016
ALS Vengeance
You never really beat this disease. It's not like cancer or other disease with the possibility of improvement or treatment. ALS always comes at you, relentless, unyielding, inescapable. Anytime you begin to feel good, normal, the disease finds a way to remind you that you are not normal. You are not strong. You are not going to beat it.
For the last few days I was feeling pretty good. I attribute a part of that feeling, perhaps the largest part of that feeling, to Katherine's return. It is no coincidence that she comes back and I feel better. For the last few days, I've felt like I could keep up with life, sleeping perhaps as little as 8 or 9 hours a night, spending my energy like I could actually recover it somehow. Then, last night, ALS reminded me that there is a price to pay.
After a terrific time in Edmonton, Katherine and I hit the road at about 11:00 AM. We grabbed a Timmie's breakfast and headed down Highway 2 towards Calgary. Within an hour, I needed a rest. We stopped at Red Deer and I slept in the truck for a half hour. We headed out again, detouring to Big Valley along the way. While Katherine got us ice cream, I fell asleep for a short nap in the truck. By the time we got home at 5:00 PM, I was completely exhausted.
I transferred to the couch right away, taking a few minutes there to write my blog and a short set of lyrics which I sent off to a friend. Then I fell asleep. Katherine needed some rest too, so she sat with me, leaned back on the pillows, and watched the news. I didn't get that far. I slept on the couch from 6:00 PM to 11:00 PM. I watched some of the late news and went off to bed, where I slept once again, this time from 11:45 PM until 10:00 AM. If you add it all up, that's more than 15 hours of sleep last night. And I am still tired this morning; I'll need a nap in a bit.
You just can't get ahead of the exhaustion. No matter how normal you feel, you are not normal. I am not even normal for a paraplegic! I am too often tired, too often ready to sleep, regardless of how much rest I have. And when I don't feel that way, ALS will come back with a vengeance, reminding me that it is in charge of my body, not me.
For the last few days I was feeling pretty good. I attribute a part of that feeling, perhaps the largest part of that feeling, to Katherine's return. It is no coincidence that she comes back and I feel better. For the last few days, I've felt like I could keep up with life, sleeping perhaps as little as 8 or 9 hours a night, spending my energy like I could actually recover it somehow. Then, last night, ALS reminded me that there is a price to pay.
After a terrific time in Edmonton, Katherine and I hit the road at about 11:00 AM. We grabbed a Timmie's breakfast and headed down Highway 2 towards Calgary. Within an hour, I needed a rest. We stopped at Red Deer and I slept in the truck for a half hour. We headed out again, detouring to Big Valley along the way. While Katherine got us ice cream, I fell asleep for a short nap in the truck. By the time we got home at 5:00 PM, I was completely exhausted.
I transferred to the couch right away, taking a few minutes there to write my blog and a short set of lyrics which I sent off to a friend. Then I fell asleep. Katherine needed some rest too, so she sat with me, leaned back on the pillows, and watched the news. I didn't get that far. I slept on the couch from 6:00 PM to 11:00 PM. I watched some of the late news and went off to bed, where I slept once again, this time from 11:45 PM until 10:00 AM. If you add it all up, that's more than 15 hours of sleep last night. And I am still tired this morning; I'll need a nap in a bit.
You just can't get ahead of the exhaustion. No matter how normal you feel, you are not normal. I am not even normal for a paraplegic! I am too often tired, too often ready to sleep, regardless of how much rest I have. And when I don't feel that way, ALS will come back with a vengeance, reminding me that it is in charge of my body, not me.
Sunday, 26 June 2016
Big Valley
Katherine and I were in Edmonton last night, up to see my brother Jim in a musical theatre performance. Jim is terrifically talented and we had a great evening watching him sing and dance his way across and around the stage. The show itself, called Murder and Mayhem, was a compilation show taking songs from many musicals and using the songs to tell the story of a murder, except it was all fairly comedic, including Jim's part. He did well.
This morning we headed back to Calgary, down Highway 2, headed south. After about an hour on the road we came to Red Deer, and I needed a rest. So we stopped. After about 30 minutes we were about to make our way to Calgary when I noticed the sign for Big Valley, a town I hadn't visited since the late 1970's. Back then my half-sister, Sarah, and step-sister, Lisa were living with their Mom, my once stepmother, Margot, and her husband Jim.
Big Valley was a dry as dust tiny prairie town of a couple of hundred people back then, serving the local farms and ranches. Margot and Jim had bought the general store in hopes to make a life of it in Alberta. Alas, this was not to be; times were hard for small town Alberta in those years, and their store was not a success. Nonetheless, their presence in the town brought me there for a visit, one I have never forgotten.
There have been many changes to Big Valley in the last 40 years. The roads have been paved. There is a new ball field and other new buildings, and the town is now the terminus for the Alberta Prairie Steam Tours railway, a railway with an old steam engine and a number of old CPR passenger cars which does rail tours starting in Stettler, Alberta, some 35 kilometers away. People board the train in Stettler, ride up to Big Valley for lunch and tours, then head back to Stettler again.
The tour company has played a bit fast and loose with the history here. Big Valley has only been around since about 1910, but the characters on the street are all dressed in "old west" outfits, more resembling the American west of the 1880's. There's a town Sheriff, complete with a couple of six guns, something you would never have seen in the Canadian west, and particularly not in 1910. They even stage a train robbery on occasion. There are only 3 recorded train robberies in Canada, two of them by Billy Miner in BC and one in Port Credit, Ontario, and all of them well before the railway went in to Big Valley.
Nonetheless, the tourists love the train ride. So would I. The wild west part is just another way marketers in Canada conflate our history with that of our rather lawless neighbour to the south. There is the Jimmy Jock boardwalk, a property once owned by a Chinese restaurateur named Jimmy Jock. The restaurant is long gone, now replaced with a boardwalk lined with funky little tourist shops. Katherine and I got an ice cream cone, some fudge, and some locally made meat pies. We did what tourists are supposed to do there.
Big Valley has come a long way in the last 40 years, at least from a tourist perspective. The town itself still has about 350 people in it, still serves the local ranchers and farmers. But the local general store still looks like it sees just a few shoppers on any given day. Life is still hard in rural Alberta.
This morning we headed back to Calgary, down Highway 2, headed south. After about an hour on the road we came to Red Deer, and I needed a rest. So we stopped. After about 30 minutes we were about to make our way to Calgary when I noticed the sign for Big Valley, a town I hadn't visited since the late 1970's. Back then my half-sister, Sarah, and step-sister, Lisa were living with their Mom, my once stepmother, Margot, and her husband Jim.
Big Valley was a dry as dust tiny prairie town of a couple of hundred people back then, serving the local farms and ranches. Margot and Jim had bought the general store in hopes to make a life of it in Alberta. Alas, this was not to be; times were hard for small town Alberta in those years, and their store was not a success. Nonetheless, their presence in the town brought me there for a visit, one I have never forgotten.
There have been many changes to Big Valley in the last 40 years. The roads have been paved. There is a new ball field and other new buildings, and the town is now the terminus for the Alberta Prairie Steam Tours railway, a railway with an old steam engine and a number of old CPR passenger cars which does rail tours starting in Stettler, Alberta, some 35 kilometers away. People board the train in Stettler, ride up to Big Valley for lunch and tours, then head back to Stettler again.
The tour company has played a bit fast and loose with the history here. Big Valley has only been around since about 1910, but the characters on the street are all dressed in "old west" outfits, more resembling the American west of the 1880's. There's a town Sheriff, complete with a couple of six guns, something you would never have seen in the Canadian west, and particularly not in 1910. They even stage a train robbery on occasion. There are only 3 recorded train robberies in Canada, two of them by Billy Miner in BC and one in Port Credit, Ontario, and all of them well before the railway went in to Big Valley.
Nonetheless, the tourists love the train ride. So would I. The wild west part is just another way marketers in Canada conflate our history with that of our rather lawless neighbour to the south. There is the Jimmy Jock boardwalk, a property once owned by a Chinese restaurateur named Jimmy Jock. The restaurant is long gone, now replaced with a boardwalk lined with funky little tourist shops. Katherine and I got an ice cream cone, some fudge, and some locally made meat pies. We did what tourists are supposed to do there.
Big Valley has come a long way in the last 40 years, at least from a tourist perspective. The town itself still has about 350 people in it, still serves the local ranchers and farmers. But the local general store still looks like it sees just a few shoppers on any given day. Life is still hard in rural Alberta.
Saturday, 25 June 2016
The Power Of Positive Thinking
It's another one of those mornings this mornings, those mornings where I feel good, where I feel like I might actually be getting better, where I feel stronger than the day before. I know there are days like this, days when ALS is taking a break. It's not giving up, just as I am not giving up, but for today, I am doing well.
Part of this is because Katherine is home; there is no doubt in my mind of this. When she is around, I am happier, I laugh more, I eat better, I sleep better. By here mere actions she can draw a smile from me, make me feel lighter, better. I felt so well this morning that I made a massive Steak and Egg Breakfast for the both of us, with hashbrowns too!
I have never been one of these "Power of Positive Thinking" guys. It seems pretty clear to me that positive thinking will not defeat ALS, just as it cannot defeat cancer or a broken leg. On the other hand, a good mental attitude will help a great deal in handling what life gives you, even if that includes a nasty disease. A light heart will not stop the encroaching muscle loss, but it will make me feel more powerful today, for the moment.
For the moment, that's the trick. If there is anything I know about feeling good, it's that it is a thing of the present, a thing of this moment. I cannot use my happiness to make me feel good a week from now. I cannot bank my emotional strength. It has to be used today, right now, to enjoy this time and place. Tomorrow it will be up to my body and my emotions to build, once again, that happy feeling which in me resides now.
I do not believe I can "Think And Grow Rich". I do not believe that mere thought can change my life. What it really changes is the way I approach my life, how I feel about living. When I am in a good frame of mind, ALS seems a mere inconvenience. Then action is necessary. That's how I feel today; good, and ready for action.
Part of this is because Katherine is home; there is no doubt in my mind of this. When she is around, I am happier, I laugh more, I eat better, I sleep better. By here mere actions she can draw a smile from me, make me feel lighter, better. I felt so well this morning that I made a massive Steak and Egg Breakfast for the both of us, with hashbrowns too!
I have never been one of these "Power of Positive Thinking" guys. It seems pretty clear to me that positive thinking will not defeat ALS, just as it cannot defeat cancer or a broken leg. On the other hand, a good mental attitude will help a great deal in handling what life gives you, even if that includes a nasty disease. A light heart will not stop the encroaching muscle loss, but it will make me feel more powerful today, for the moment.
For the moment, that's the trick. If there is anything I know about feeling good, it's that it is a thing of the present, a thing of this moment. I cannot use my happiness to make me feel good a week from now. I cannot bank my emotional strength. It has to be used today, right now, to enjoy this time and place. Tomorrow it will be up to my body and my emotions to build, once again, that happy feeling which in me resides now.
I do not believe I can "Think And Grow Rich". I do not believe that mere thought can change my life. What it really changes is the way I approach my life, how I feel about living. When I am in a good frame of mind, ALS seems a mere inconvenience. Then action is necessary. That's how I feel today; good, and ready for action.
Friday, 24 June 2016
Technology For The Rest Of You
I have my computer setup to do automatic updates from Microsoft. Some would contend that this is a bad idea, a risky idea. Microsoft has, in the past, released a few bombs on an unsuspecting public by way of updates with mistakes in them. Microsoft is not alone in this; I've seen the same with Adobe and other software providers. And with the many updates, thanks to continuing security challenges and hackers, there are bound to be mistakes that creep in.
Today I experienced one of those mistakes, one which was new to me. I've spent the last hour or so trying to reconfigure my desktop back to it's original state. The update last night seemed to have caused my computer desktop to disappear, replacing it with the new "tiles" approach used on most tablets these days. After extensive research and peeking and poking, I discovered that the update applied last night ended off by setting my laptop into what is called "Tablet Mode". That means my laptop thinks it is a tablet, and thus would only display the tiles rather than a desktop.
My guess is that some developer somewhere decided that a device with a touch screen must be a tablet, ergo the default to tablet mode. I can see the logic in this thinking, given that most laptops do not have touch screens. But this is a changing metaphor; I believe that touch screens, like a great many applications originally designed for accessibility, will soon be part of the standard computer. Plus I think the developer was pretty arrogant to make an assumption and change a setting like that without confirming it with the user. Updates should never change an interface without user permission, plain and simple.
This is important to me on two fronts. I use the touch screen because there are days when my hands are shaking enough that I cannot get the mouse to where I want it. So I touch the screen; the shaking is usually not bad enough that I miss by much. The other reason these settings are important to me is because I will be using other non-default settings as time goes by, with access technologies like speech interface and eye gaze. These are common tools for people with ALS.
What is perhaps most interesting in all of this is that so many of these tools developed for those of us with limitations become a standard part of the toolset for the enabled world. Speech interface is common on most cell phones and hands free systems these days. Soon it will be standard on all computers, along with built in dictation ability. Soon your PC will easily adjust for failing eyesight and poor typing skills. Autocorrection is already de facto in almost all cell phones, and most computer programs.
You see, we in the handicapped world know how important it is to be able to access things. And once our life is easier, it quickly transfers into the non-handicapped world. This is true for computers, for cell phones, for sidewalks, for stairways, for doorways, for bathrooms, and for all kinds of things. By being handicapped, we are leading the way in making the world a better place. All we need is your help. Trust me, you'll be happy you did.
Today I experienced one of those mistakes, one which was new to me. I've spent the last hour or so trying to reconfigure my desktop back to it's original state. The update last night seemed to have caused my computer desktop to disappear, replacing it with the new "tiles" approach used on most tablets these days. After extensive research and peeking and poking, I discovered that the update applied last night ended off by setting my laptop into what is called "Tablet Mode". That means my laptop thinks it is a tablet, and thus would only display the tiles rather than a desktop.
My guess is that some developer somewhere decided that a device with a touch screen must be a tablet, ergo the default to tablet mode. I can see the logic in this thinking, given that most laptops do not have touch screens. But this is a changing metaphor; I believe that touch screens, like a great many applications originally designed for accessibility, will soon be part of the standard computer. Plus I think the developer was pretty arrogant to make an assumption and change a setting like that without confirming it with the user. Updates should never change an interface without user permission, plain and simple.
This is important to me on two fronts. I use the touch screen because there are days when my hands are shaking enough that I cannot get the mouse to where I want it. So I touch the screen; the shaking is usually not bad enough that I miss by much. The other reason these settings are important to me is because I will be using other non-default settings as time goes by, with access technologies like speech interface and eye gaze. These are common tools for people with ALS.
What is perhaps most interesting in all of this is that so many of these tools developed for those of us with limitations become a standard part of the toolset for the enabled world. Speech interface is common on most cell phones and hands free systems these days. Soon it will be standard on all computers, along with built in dictation ability. Soon your PC will easily adjust for failing eyesight and poor typing skills. Autocorrection is already de facto in almost all cell phones, and most computer programs.
You see, we in the handicapped world know how important it is to be able to access things. And once our life is easier, it quickly transfers into the non-handicapped world. This is true for computers, for cell phones, for sidewalks, for stairways, for doorways, for bathrooms, and for all kinds of things. By being handicapped, we are leading the way in making the world a better place. All we need is your help. Trust me, you'll be happy you did.
Thursday, 23 June 2016
Katherine's Home
Katherine's home. Of course I likely won't see her today. At least I am not expecting to see her today. After 24 hours in transit from Hong Kong to Vancouver to Calgary, after almost a month away from home, she needs a day or two to settle in, to adjust to the jet lag, to do laundry, to unpack, to deal with the thousand little things that accumulate while you are on vacation.
For me, even having her close by is a blessing. She is only a few minutes away if I need help with a transfer board or something. She is only a few minutes away if I need a hug, or comforting. More importantly, she is only a few minutes away if she needs me from anything, although she does much better than I these days. Still, it's good to know she is here, nearby.
I did okay while she was gone. I had plenty of company, so the only times I got lonely were at night, home alone, thinking of her on the other side of the planet. I had lots of people come by for dinner, so I ate very few meals alone, and if I was alone, I likely didn't eat all that much. I do better when Katherine is here; it's more fun to cook and more fun to share the meal. I loved all those who were here, but I suspect they will understand completely when I say that I missed Katherine's meals with me. And they were there when I called for help, something I truly appreciate.
There were plenty of other things I missed, but most of all it was just having Katherine near me. I missed her hugs. I missed her making breakfast for me, and sitting with me, talking with me, sharing with me. I missed driving places with her, seeing the miles go by and hearing her voice beside me. I missed her walking into my apartment and telling me to "get up!" I missed her sitting next to me, watching a movie, she drifting off to sleep, me nestled into the corner of my couch with her head on my lap.
It's a good day today, made better now that she is home. I can wait until she has done what she needs to do. I know I will see her soon.
For me, even having her close by is a blessing. She is only a few minutes away if I need help with a transfer board or something. She is only a few minutes away if I need a hug, or comforting. More importantly, she is only a few minutes away if she needs me from anything, although she does much better than I these days. Still, it's good to know she is here, nearby.
I did okay while she was gone. I had plenty of company, so the only times I got lonely were at night, home alone, thinking of her on the other side of the planet. I had lots of people come by for dinner, so I ate very few meals alone, and if I was alone, I likely didn't eat all that much. I do better when Katherine is here; it's more fun to cook and more fun to share the meal. I loved all those who were here, but I suspect they will understand completely when I say that I missed Katherine's meals with me. And they were there when I called for help, something I truly appreciate.
There were plenty of other things I missed, but most of all it was just having Katherine near me. I missed her hugs. I missed her making breakfast for me, and sitting with me, talking with me, sharing with me. I missed driving places with her, seeing the miles go by and hearing her voice beside me. I missed her walking into my apartment and telling me to "get up!" I missed her sitting next to me, watching a movie, she drifting off to sleep, me nestled into the corner of my couch with her head on my lap.
It's a good day today, made better now that she is home. I can wait until she has done what she needs to do. I know I will see her soon.
Wednesday, 22 June 2016
I Feel Good
ALS is a cruel disease. It sounds trite when I say it, or write it. All disease is cruel. It's the level of cruelty that makes ALS stand out. It's the physical cruelty, where you see yourself diminish while your mind is intact and active. It's the financial cruelty, the costs of the disease and the losses from not earning an income. It's the emotional and mental cruelty, perhaps the worst cruelty of all, since it is mostly invisible, hidden from view behind a smiling face or a cheerful attitude.
This morning I woke up feeling good, better than I have in several days. My arms felt good, I felt strong and capable, or at least as strong and capable as I could be. It's moments like this, mornings like this, which are, in their own way, the cruelest of all. This kind of a morning breeds hope. I actually feel like I could be getting better, like I could be the one person in a million for whom ALS recedes.
Then I begin to think about it, the odds of it. I begin to realize how dangerous hope really is, how much you can be let down if you anticipate. It's like holding a lollipop out for a child, then snatching it away at the last minute. It's cruel in the sense of unexpected loss. OK, I'm feeling good right now, but I won't tomorrow. For me, tomorrow's expectation is one of further decline.
ALS is like this. It's not a straight line decent, except for the unfortunate few. It's a roller-coaster ride, physical, financial, and emotional, with whipsaw turns that fling you about physically and psychologically. There are no second chances, no future plans. You don't think beyond what is right in front of you. And you avoid hope; it can destroy you.
Yet, as odd as it must sound, my emotions are in good shape today. The depression I've been battling for the last couple of days has lifted. Feeling better in my body definitely means feeling better in my mind. There is a direct link, mind and body. In a disease where I can look forward to so little, it makes a big difference to feel good today. I plan on enjoying it.
This morning I woke up feeling good, better than I have in several days. My arms felt good, I felt strong and capable, or at least as strong and capable as I could be. It's moments like this, mornings like this, which are, in their own way, the cruelest of all. This kind of a morning breeds hope. I actually feel like I could be getting better, like I could be the one person in a million for whom ALS recedes.
Then I begin to think about it, the odds of it. I begin to realize how dangerous hope really is, how much you can be let down if you anticipate. It's like holding a lollipop out for a child, then snatching it away at the last minute. It's cruel in the sense of unexpected loss. OK, I'm feeling good right now, but I won't tomorrow. For me, tomorrow's expectation is one of further decline.
ALS is like this. It's not a straight line decent, except for the unfortunate few. It's a roller-coaster ride, physical, financial, and emotional, with whipsaw turns that fling you about physically and psychologically. There are no second chances, no future plans. You don't think beyond what is right in front of you. And you avoid hope; it can destroy you.
Yet, as odd as it must sound, my emotions are in good shape today. The depression I've been battling for the last couple of days has lifted. Feeling better in my body definitely means feeling better in my mind. There is a direct link, mind and body. In a disease where I can look forward to so little, it makes a big difference to feel good today. I plan on enjoying it.
Tuesday, 21 June 2016
$7.52
I looked at my bank balance this morning; $7.52. That's right, there is a decimal point in there. Then I looked at the cash in my wallet; $185 thanks to a gift from my Mom. And I have a $500 cheque in my wallet as payment for a writing assignment. So I can cover the next mortgage payment, buy some groceries, and pay my electrical and cell phone bills. After all that, my bank balance will once again be in the single figures.
This is not a complaint about money. In fact I consider myself to be doing reasonably well, thanks to the generosity of others along with my disability pension. Yet each month, at about this time of the month, I look at that bank balance and it says much the same thing. It's just what happens when you lose your ability to work and are compelled to live on handouts. Life is precarious.
Whenever anyone says "it's not about the money", you can bet your ass it's about the money. Money is not everything in life, but without it you are pretty much nothing. Look around you. Look at the homeless on the street. We view them with disdain, thinking they must have done something to get there. In many cases you would be right. They too live precarious lives, riven by alcohol and drugs, destroyed by mental illness. I feel like I am right there with them.
I know that I will receive my pension in a week. I know that AISH will come in at about the same time. And I know that I will be broke once again a few weeks later. It is a depressing cycle. But at least this cycle is relatively stable. And every once in a while thanks to the generosity around me, I get to do something special, like buy a wine kit or go to see my Mom.
Make no mistake. This is purely as a result of ALS. Were I well, I would not be in this place; at least I hope not. Were I well, I would still be working, still be earning, still have a bank balance to speak of. Yet here I am; living on the margins of life, with $7.52 in my bank account.
This is not a complaint about money. In fact I consider myself to be doing reasonably well, thanks to the generosity of others along with my disability pension. Yet each month, at about this time of the month, I look at that bank balance and it says much the same thing. It's just what happens when you lose your ability to work and are compelled to live on handouts. Life is precarious.
Whenever anyone says "it's not about the money", you can bet your ass it's about the money. Money is not everything in life, but without it you are pretty much nothing. Look around you. Look at the homeless on the street. We view them with disdain, thinking they must have done something to get there. In many cases you would be right. They too live precarious lives, riven by alcohol and drugs, destroyed by mental illness. I feel like I am right there with them.
I know that I will receive my pension in a week. I know that AISH will come in at about the same time. And I know that I will be broke once again a few weeks later. It is a depressing cycle. But at least this cycle is relatively stable. And every once in a while thanks to the generosity around me, I get to do something special, like buy a wine kit or go to see my Mom.
Make no mistake. This is purely as a result of ALS. Were I well, I would not be in this place; at least I hope not. Were I well, I would still be working, still be earning, still have a bank balance to speak of. Yet here I am; living on the margins of life, with $7.52 in my bank account.
Monday, 20 June 2016
Sleeping On The Couch
I slept on the couch last night. I didn't mean to sleep on the couch. I didn't want to sleep on the couch. I just had to sleep on the couch, at least until Chris woke up.
My friend Chris Gordon was accompanying me home on Saturday, making the long haul from Vancouver to Calgary. We arrived at my apartment at around 1:00 AM. Chris was up fairly early on Sunday and I slept until nearly noon. Then we set about making a lasagna for dinner. That meant I spent most of the day in my manual wheelchair, cutting vegetables, making sauce, preparing the lasagna. Chris helped a great deal as well, slicing cheese, assisting with the sauce and assembly.
By the time dinner rolled around, and rolled right on by, I was exhausted. I needed to rest, so I transferred from my wheelchair to the couch. This is a simple downhill transfer; no assistance required. I just slide out of my wheelchair and onto the couch. Once in, I settled for the evening. Chris did a terrific job of getting me everything I wanted.
We watched the movie "Patton", after which Chris decided he was tired. He went to bed and I stayed up to watch a few episodes of "Aquarius" on Netflix. At about 11:30 PM, I decided I was tired too, and it was bedtime for me. So I reached for my transfer board, and discovered that it wasn't there. I had left it in the front hall when we unloaded the truck on Saturday night.
Without the transfer board, I cannot make the uphill transfer from the couch to my wheelchair. It is a lift of about 3 inches, much more than I can do these days. Nor can I simply pull myself up; I am no longer strong enough to do that. So without the transfer board, I was stuck on the couch. Now you might think I would have yelled to wake Chris up and get him out of bed to get me my transfer board. But remember, he had spent the whole evening getting stuff for me. I just felt bad about waking him up.
So I slept on the couch. In the morning when he woke up, he saw my post on Facebook about needing the transfer board, and appeared magically beside me, board in hand. I transferred and he asked if I was going to stay up. "No. I'm going to bed" was my reply. Even the two more hours of sleep before homecare makes a difference to me. I abandoned him to his devices and departure. I slept right through it. I missed saying good bye. But at least I wasn't sleeping on the couch anymore.
My friend Chris Gordon was accompanying me home on Saturday, making the long haul from Vancouver to Calgary. We arrived at my apartment at around 1:00 AM. Chris was up fairly early on Sunday and I slept until nearly noon. Then we set about making a lasagna for dinner. That meant I spent most of the day in my manual wheelchair, cutting vegetables, making sauce, preparing the lasagna. Chris helped a great deal as well, slicing cheese, assisting with the sauce and assembly.
By the time dinner rolled around, and rolled right on by, I was exhausted. I needed to rest, so I transferred from my wheelchair to the couch. This is a simple downhill transfer; no assistance required. I just slide out of my wheelchair and onto the couch. Once in, I settled for the evening. Chris did a terrific job of getting me everything I wanted.
We watched the movie "Patton", after which Chris decided he was tired. He went to bed and I stayed up to watch a few episodes of "Aquarius" on Netflix. At about 11:30 PM, I decided I was tired too, and it was bedtime for me. So I reached for my transfer board, and discovered that it wasn't there. I had left it in the front hall when we unloaded the truck on Saturday night.
Without the transfer board, I cannot make the uphill transfer from the couch to my wheelchair. It is a lift of about 3 inches, much more than I can do these days. Nor can I simply pull myself up; I am no longer strong enough to do that. So without the transfer board, I was stuck on the couch. Now you might think I would have yelled to wake Chris up and get him out of bed to get me my transfer board. But remember, he had spent the whole evening getting stuff for me. I just felt bad about waking him up.
So I slept on the couch. In the morning when he woke up, he saw my post on Facebook about needing the transfer board, and appeared magically beside me, board in hand. I transferred and he asked if I was going to stay up. "No. I'm going to bed" was my reply. Even the two more hours of sleep before homecare makes a difference to me. I abandoned him to his devices and departure. I slept right through it. I missed saying good bye. But at least I wasn't sleeping on the couch anymore.
Sunday, 19 June 2016
Driving Home
Betty's Run is a week past. I've been to Vancouver and come home. I'm back into my normal life, or as normal as life can be for me. My friend Chris Gordon drove with me yesterday, making the trip in the passenger seat. I managed to drive the whole way, without incident. It was a 12 hour driving day, plus a couple of hours for stops, visits along the way, gas, etc.
I am pleased that I could still make that drive. In fact I did it easily. There was, and is, little strain when I drive. The driver's seat in my truck is perhaps the most comfortable seat I use. It beats my wheelchair by a mile, and even has one up on my fancy power chair; it is attached to my truck. Mile after mile passes by with very little effort on my part, the steering wheel easy to turn, cruise control on. Highway driving is the best.
This does not mean I should not have someone with me when I travel; I should. As Chris says, it is a kind of risk/reward thing. I can see what he means. More and more there are things of increasing difficulty for me. Getting in and out of the truck is tough enough. Fueling up requires that I find a full service gas station, something impossible in a great many places. And then there are things like the possibility of a flat tire or some other vehicle problem.
Still, I like that I retain some independence. I like that I can still depend on myself to make it work, to get myself from there to here and from here to there. I like that I continue to feel the freedom of the open road. I'm not sure how long it will last, so I am going to enjoy it while I can. I'm pretty sure I will do another road trip this summer, perhaps to Bella Coola, along the last stretch of major highway in BC which I have not yet driven. That sounds like freedom to me.
I am pleased that I could still make that drive. In fact I did it easily. There was, and is, little strain when I drive. The driver's seat in my truck is perhaps the most comfortable seat I use. It beats my wheelchair by a mile, and even has one up on my fancy power chair; it is attached to my truck. Mile after mile passes by with very little effort on my part, the steering wheel easy to turn, cruise control on. Highway driving is the best.
This does not mean I should not have someone with me when I travel; I should. As Chris says, it is a kind of risk/reward thing. I can see what he means. More and more there are things of increasing difficulty for me. Getting in and out of the truck is tough enough. Fueling up requires that I find a full service gas station, something impossible in a great many places. And then there are things like the possibility of a flat tire or some other vehicle problem.
Still, I like that I retain some independence. I like that I can still depend on myself to make it work, to get myself from there to here and from here to there. I like that I continue to feel the freedom of the open road. I'm not sure how long it will last, so I am going to enjoy it while I can. I'm pretty sure I will do another road trip this summer, perhaps to Bella Coola, along the last stretch of major highway in BC which I have not yet driven. That sounds like freedom to me.
Saturday, 18 June 2016
I Love My Children
To those of you who read this blog, and happen to see my kids, be sure to tell them how terrific I think they are, how much I love them, and how proud I am of them. I try to tell them this myself, but I don't do it enough. I need to know for sure that they understand how precious they are to me, how special they are as individuals, and what terrific people I think they are.
My Dad did not say these kinds of things to me. He would tell others how proud he was of his children. He would brag to his friends about us, telling of our exploits and adventures with pride of his own. He would tell each of us about the other, telling me how terrific Adam was, or Peter was, or Jim or Matthew, all the while telling me where I had failed, what I was doing wrong, diminishing my accomplishments. I am grateful that I am not that way.
Mary is a wonderful person, helpful and kind, considerate of others. So is Meaghan. So is Kate. So is Ricky. Each of them seems to have become these really good people, the kind I would like to have around me. Each of them cares about others, and each of them is willing to turn that caring into action.
Meaghan and Mary are both wonderful Mom's, the kind of Mom that makes me think their children are going to do well in life. They encourage their children, letting them explore the world they live in, trying varied outlets for their creativity and intelligence. They are gentle with their children at the same time as they create strong boundaries and firm guidelines for life. They are imbuing their children with the kinds of values that make life worth living. Yet that is not their sole value; they are so much more than Mom's and wives. They are terrific people.
Kate and Rick are both strongly independent, wanting to set their own path for their future. At the same time each of them is willing to have, and looking for, that right person to share their life with. It is not that they have to have a partner. It's that they love life enough to want to share it with someone. I believe they are the kinds of people other people value as friends, and as partners. And they are just plain fun to be around, just like Mary and Meg.
All of them are strong individuals in their own right. They don't need someone else to make them into who they are; they are whole and complete just they way they are now. They have well formed ideas and opinions, different from each other yet all firm in their own belief. And where they fail themselves, they are not afraid to look and see. They know they have flaws, but it does not stop them from moving forward. They are brave.
I am proud of my children. I am proud of what they are, and the many things they can become should they decide. I love that they care; it shows in how they care for me. I admire their values and their willingness to question both themselves and others as they work their way through life. They are capable, robust, reliable, steady adults. That is, perhaps, the best thing of all.
My Dad did not say these kinds of things to me. He would tell others how proud he was of his children. He would brag to his friends about us, telling of our exploits and adventures with pride of his own. He would tell each of us about the other, telling me how terrific Adam was, or Peter was, or Jim or Matthew, all the while telling me where I had failed, what I was doing wrong, diminishing my accomplishments. I am grateful that I am not that way.
Mary is a wonderful person, helpful and kind, considerate of others. So is Meaghan. So is Kate. So is Ricky. Each of them seems to have become these really good people, the kind I would like to have around me. Each of them cares about others, and each of them is willing to turn that caring into action.
Meaghan and Mary are both wonderful Mom's, the kind of Mom that makes me think their children are going to do well in life. They encourage their children, letting them explore the world they live in, trying varied outlets for their creativity and intelligence. They are gentle with their children at the same time as they create strong boundaries and firm guidelines for life. They are imbuing their children with the kinds of values that make life worth living. Yet that is not their sole value; they are so much more than Mom's and wives. They are terrific people.
Kate and Rick are both strongly independent, wanting to set their own path for their future. At the same time each of them is willing to have, and looking for, that right person to share their life with. It is not that they have to have a partner. It's that they love life enough to want to share it with someone. I believe they are the kinds of people other people value as friends, and as partners. And they are just plain fun to be around, just like Mary and Meg.
All of them are strong individuals in their own right. They don't need someone else to make them into who they are; they are whole and complete just they way they are now. They have well formed ideas and opinions, different from each other yet all firm in their own belief. And where they fail themselves, they are not afraid to look and see. They know they have flaws, but it does not stop them from moving forward. They are brave.
I am proud of my children. I am proud of what they are, and the many things they can become should they decide. I love that they care; it shows in how they care for me. I admire their values and their willingness to question both themselves and others as they work their way through life. They are capable, robust, reliable, steady adults. That is, perhaps, the best thing of all.
Friday, 17 June 2016
14 Hours
14 hours. Of sleep. And still I am tired. Still my hands and arms are sore. Yet I would not give up one moment, one second of the time I spend with my children and grandchildren. I planned this busy time, knowing full well it would take a lot out of me. This busy time, with four generations of family in one room, with cousins dashing off and hiding to play with one another, with babies crawling about the floor or toddling about in diapers, with toys cast askew around the room; this busy time was wonderful, a moment I would change for nothing.
I loved seeing Charlotte and Rose disappear up the stairs as soon as Meaghan's family walked in the door. Cousins should be like this; close, personal, yet profoundly different from one another. Cousins are the first and best place to learn how to deal with people close to you who are different from you. Each of them has their own way, their own personality. Both of them took off together at their first opportunity.
Quinn was still asleep when Meaghan's brood arrived. He is a small boy who needs his sleep, not yet two, not quite yet old enough to get past the exhaustion of growing. Orson, Meaghan's son, had already slept on the ride in. He was more than game for crawling around at high speed, investigating every door, checking himself out in the closet mirrors, touching everything he should not touch. He moves fast, that little one. At one point Charlotte, Rose and Orson had a crawling contest. The bigger girls may have been faster, but not by much.
All of this energy, all of this activity, it wears me out. I want it, and I want it to wear me out. While their energy consumes my energy, it is the best trade you can possibly imagine. Then, after a couple of hours of pandemonium, it ended. I had to take Mary and the kids to the ferry. Meaghan and Lewis had to take their kids home. High energy consumption has an impact on kids too, not just me.
After dropping Mary and the kids at the terminal, I headed to downtown Vancouver to have dinner with Jade and Travis. It was another terrific time, a time to talk to adults, a time to talk about my situation, their situation, the past, and the future. Oh, and it was a time for sushi, lots of sushi.
By the time I got home last night there was little left in me. After an hour or so of watching TV with Mom and Ray, something they like to do, I went to bed. It was 11:00 PM. And I slept. Until 1:00 PM today. 14 hours. Of sleep. And I am still tired. That's the price of ALS. I will gladly pay that price for more days like yesterday.
I loved seeing Charlotte and Rose disappear up the stairs as soon as Meaghan's family walked in the door. Cousins should be like this; close, personal, yet profoundly different from one another. Cousins are the first and best place to learn how to deal with people close to you who are different from you. Each of them has their own way, their own personality. Both of them took off together at their first opportunity.
Quinn was still asleep when Meaghan's brood arrived. He is a small boy who needs his sleep, not yet two, not quite yet old enough to get past the exhaustion of growing. Orson, Meaghan's son, had already slept on the ride in. He was more than game for crawling around at high speed, investigating every door, checking himself out in the closet mirrors, touching everything he should not touch. He moves fast, that little one. At one point Charlotte, Rose and Orson had a crawling contest. The bigger girls may have been faster, but not by much.
All of this energy, all of this activity, it wears me out. I want it, and I want it to wear me out. While their energy consumes my energy, it is the best trade you can possibly imagine. Then, after a couple of hours of pandemonium, it ended. I had to take Mary and the kids to the ferry. Meaghan and Lewis had to take their kids home. High energy consumption has an impact on kids too, not just me.
After dropping Mary and the kids at the terminal, I headed to downtown Vancouver to have dinner with Jade and Travis. It was another terrific time, a time to talk to adults, a time to talk about my situation, their situation, the past, and the future. Oh, and it was a time for sushi, lots of sushi.
By the time I got home last night there was little left in me. After an hour or so of watching TV with Mom and Ray, something they like to do, I went to bed. It was 11:00 PM. And I slept. Until 1:00 PM today. 14 hours. Of sleep. And I am still tired. That's the price of ALS. I will gladly pay that price for more days like yesterday.
Thursday, 16 June 2016
Helpful Grandchildren
I am really only good for a day, and a short one at that. Yesterday, after running around, rolling around, and driving around with my daughter and grandchildren yesterday, I need a day of rest today. Fortunately I am getting the best of both worlds; Mary is still here with her brood and Meaghan will be here in a while with Charlotte and Orson. I get to be a Grandpa while taking it easy.
Still, I am paying for it. My arms hurt, especially my wrists and lower arms. My upper arms don't help a lot these days, nor my shoulders. I can lift, but not much. Rolling along in my wheelchair is now primarily a function of lower arm strength. Mary helped with the transfers yesterday but still, they take a bit out of me. By our last stop, I decided to stay in the car and wait. Since the kids were sleeping, I decided to join them, napping while parked.
Both Quinn and Rose are happy, healthy, helpful children. Both of them wanted to help push me in my wheelchair, Rose almost constantly behind me, pushing, making sure I was okay. This morning she was helping me make the transfer off of the bed and onto the wheelchair after I was dressed. About halfway through she decided this might be a bit too much for her, so she ran and got Momma to come and help. Quinn stood by and watched with a very serious look of concern.
Mary is terrific with me too, constantly offering to help if I need it, not at all squeamish about the biological issues I face. I am certain that's where her kids get it from. They see their Momma helping and they figure that's just what people are supposed to do, help one another. I am proud of them, and proud of her too. And I told her so.
Still, I am paying for it. My arms hurt, especially my wrists and lower arms. My upper arms don't help a lot these days, nor my shoulders. I can lift, but not much. Rolling along in my wheelchair is now primarily a function of lower arm strength. Mary helped with the transfers yesterday but still, they take a bit out of me. By our last stop, I decided to stay in the car and wait. Since the kids were sleeping, I decided to join them, napping while parked.
Both Quinn and Rose are happy, healthy, helpful children. Both of them wanted to help push me in my wheelchair, Rose almost constantly behind me, pushing, making sure I was okay. This morning she was helping me make the transfer off of the bed and onto the wheelchair after I was dressed. About halfway through she decided this might be a bit too much for her, so she ran and got Momma to come and help. Quinn stood by and watched with a very serious look of concern.
Mary is terrific with me too, constantly offering to help if I need it, not at all squeamish about the biological issues I face. I am certain that's where her kids get it from. They see their Momma helping and they figure that's just what people are supposed to do, help one another. I am proud of them, and proud of her too. And I told her so.
Wednesday, 15 June 2016
Grandchildren Time
I am off in a few minutes to pick up Mary, Rose, and Quinn. I consider myself tremendously fortunate to have met my grandchildren. I did not expect this to happen. I consider myself tremendously fortunate to have lived long enough to get to know them a bit, to see their personalities arise. It is my sincere hope that they will remember me after ALS takes me from them.
It's on days like this when I think of those terrible situations faced by those younger than me who are struggling with this terrible disease; young adults who have yet to have children, should they have wanted them; young parents with small children who live in the shadow of this vale of death; parents with teenagers facing this monster, needing to reverse the role of child and parent. On days like this, where I get to enjoy the pleasure of my young grandchildren, I count myself lucky.
Even my own children did not get to meet their grandfather. My ex-wife's dad died shortly before I met her, when she was only 18. He did not get to hear the laughter of my children when they were small, nor see them grow, accomplish, and have children of their own. My children's children get to meet me, get to spend a day or two with me every now and again, get to know who I am. I am thankful for even this.
The biggest challenge of the day will be my own energy level. I don't have my power wheelchair. There will be much running and going and stopping and starting throughout the balance of the day. I will do my best; it's a rare chance for me. Yet I know this will ultimately wear me out. It's worth it. I just know I will have to plan for it, make allowances, adjustments. And then the evening will come, where the kids will be asleep and we, Mary, Ray, Mom, and I, will sit and talk, spending a quiet evening together. That will be good too.
It's on days like this when I think of those terrible situations faced by those younger than me who are struggling with this terrible disease; young adults who have yet to have children, should they have wanted them; young parents with small children who live in the shadow of this vale of death; parents with teenagers facing this monster, needing to reverse the role of child and parent. On days like this, where I get to enjoy the pleasure of my young grandchildren, I count myself lucky.
Even my own children did not get to meet their grandfather. My ex-wife's dad died shortly before I met her, when she was only 18. He did not get to hear the laughter of my children when they were small, nor see them grow, accomplish, and have children of their own. My children's children get to meet me, get to spend a day or two with me every now and again, get to know who I am. I am thankful for even this.
The biggest challenge of the day will be my own energy level. I don't have my power wheelchair. There will be much running and going and stopping and starting throughout the balance of the day. I will do my best; it's a rare chance for me. Yet I know this will ultimately wear me out. It's worth it. I just know I will have to plan for it, make allowances, adjustments. And then the evening will come, where the kids will be asleep and we, Mary, Ray, Mom, and I, will sit and talk, spending a quiet evening together. That will be good too.
Tuesday, 14 June 2016
Making It Work
I ended up unintentionally staying at a hotel in Abbotsford last night. It was not my plan, however a significant lower bowel issue demanded immediate attention when I was dropping Ricky off. I had to have bathroom, and I would have to clean myself up. It's just another one of those things which happens when you cannot move quickly or use most facilities.
So I called a hotel where I have stayed at any number of times and asked for one of their rooms with a handicapped washroom and roll in shower. When I arrived, dirty pants and all, I was given a room with a handicapped washroom and a bathtub, no shower. By this time it was too late to try to get another room elsewhere; I desperately needed to use the toilet, and to change my clothes. So I stayed.
Once I had cleaned myself up, I called the front desk to let the young lady know that this room did not have a roll-in shower. She immediately discounted the room by 50% and apologized. She said she was certain the room had a roll-in shower. Apparently she had not actually been into the room, but had been going on what she saw in the other handicapped rooms. Hotels! Please have your staff check out ALL the rooms they are selling!
This is a significant issue with all hotels, whether here in Canada or elsewhere. We have no clear definition of what a "handicapped" room should look like. This is simply because there are so many levels and types of handicapped. What we really need is a room designation that matches the handicapped logo, a room which is not called "accessible" but which clearly has a roll in shower, a raised handicapped toilet, room to turn a wheelchair around, safety bars, and sinks at a proper height. We, here in Canada, need a law which says what "wheelchair access" means.
Canada has no national law regarding handicapped access. The Charter of Rights was supposed to take care of that. As usual with business, they found ways to circumvent the Charter simply by claiming undue expense, and handicapped people found they could not bear the expense of a court challenge. So there is this hodge-podge of blue wheelchair symbols indicating everything from virtually no access to complete accessibility.
Today I will figure out how to make this work. I always do. That is what it means for me to be handicapped, making things work when they are not designed to work. It means doing far more, despite the eternal exhaustion of ALS. It means working harder to get the same result, the same treatment as an able bodied person, despite my disability. It means fighting to live something vaguely resembling a normal life, something everyone else takes for granted, despite higher costs, lower levels of service, no facilities, and every other impediment you can image. I still want to live, so I have to make it work.
So I called a hotel where I have stayed at any number of times and asked for one of their rooms with a handicapped washroom and roll in shower. When I arrived, dirty pants and all, I was given a room with a handicapped washroom and a bathtub, no shower. By this time it was too late to try to get another room elsewhere; I desperately needed to use the toilet, and to change my clothes. So I stayed.
Once I had cleaned myself up, I called the front desk to let the young lady know that this room did not have a roll-in shower. She immediately discounted the room by 50% and apologized. She said she was certain the room had a roll-in shower. Apparently she had not actually been into the room, but had been going on what she saw in the other handicapped rooms. Hotels! Please have your staff check out ALL the rooms they are selling!
This is a significant issue with all hotels, whether here in Canada or elsewhere. We have no clear definition of what a "handicapped" room should look like. This is simply because there are so many levels and types of handicapped. What we really need is a room designation that matches the handicapped logo, a room which is not called "accessible" but which clearly has a roll in shower, a raised handicapped toilet, room to turn a wheelchair around, safety bars, and sinks at a proper height. We, here in Canada, need a law which says what "wheelchair access" means.
Canada has no national law regarding handicapped access. The Charter of Rights was supposed to take care of that. As usual with business, they found ways to circumvent the Charter simply by claiming undue expense, and handicapped people found they could not bear the expense of a court challenge. So there is this hodge-podge of blue wheelchair symbols indicating everything from virtually no access to complete accessibility.
Today I will figure out how to make this work. I always do. That is what it means for me to be handicapped, making things work when they are not designed to work. It means doing far more, despite the eternal exhaustion of ALS. It means working harder to get the same result, the same treatment as an able bodied person, despite my disability. It means fighting to live something vaguely resembling a normal life, something everyone else takes for granted, despite higher costs, lower levels of service, no facilities, and every other impediment you can image. I still want to live, so I have to make it work.
Monday, 13 June 2016
Ricky Drives, I Write
We are on the road to Vancouver. We've been on the road for about five hours now, but I have been asleep for most of that time. Ricky is driving. He is a good driver, not so fast as to make me uncomfortable, fast enough to make good time. My level of comfort could probably be best assessed by the fact that I have slept almost the whole time.
I did not sleep well last night. The excitment of Sunday, with Betty's Walk and then having company over, along with the anxious anticipation of the drive today, left me not wanting to sleep. I left my packing until late; not really an issue for me since I can pack in about five minutes. Still, there I was still folding laundry well past midnight. I knew, however, that I would sleep on the road, so I did not worry, at least about that.
We are into the afternoon stretch, making our way between Sicamous and Salmon Arm. Ricky has the music up loud and his window open. As he says, "I got a pocket full of cash and a drawer full of cash. I'm happy." I'm in a pretty good mood too, well rested, enjoying his music, feeling particularly free with the ability to write while he drives.
I am enjoying this time, where I can be a passenger, voluntarily. Unfortunately it reminds me that soon I will have no choice. I will, at that future time, be compelled to be a passenger in almost all things. Still, today letting him do the work of driving is good for me. It let's me enjoy the road more, at least when I am not asleep.
The weather at this time of year, across BC, has more twists and turns than the road itself. From pouring rain on the edge of snow in the high passes to summertime warmth, we have had it all. Right now the sky is grey and the air is cool. Yet I know there is sunshine ahead. That's what keeps me moving forward, that promise of sunshine.
I did not sleep well last night. The excitment of Sunday, with Betty's Walk and then having company over, along with the anxious anticipation of the drive today, left me not wanting to sleep. I left my packing until late; not really an issue for me since I can pack in about five minutes. Still, there I was still folding laundry well past midnight. I knew, however, that I would sleep on the road, so I did not worry, at least about that.
We are into the afternoon stretch, making our way between Sicamous and Salmon Arm. Ricky has the music up loud and his window open. As he says, "I got a pocket full of cash and a drawer full of cash. I'm happy." I'm in a pretty good mood too, well rested, enjoying his music, feeling particularly free with the ability to write while he drives.
I am enjoying this time, where I can be a passenger, voluntarily. Unfortunately it reminds me that soon I will have no choice. I will, at that future time, be compelled to be a passenger in almost all things. Still, today letting him do the work of driving is good for me. It let's me enjoy the road more, at least when I am not asleep.
The weather at this time of year, across BC, has more twists and turns than the road itself. From pouring rain on the edge of snow in the high passes to summertime warmth, we have had it all. Right now the sky is grey and the air is cool. Yet I know there is sunshine ahead. That's what keeps me moving forward, that promise of sunshine.
Sunday, 12 June 2016
Betty's Run Today
I am exhausted. What a day! Today was the 20th anniversary of Betty's Run for ALS. I was there. I was there last year, and the year before, and the year before that. This is the fourth run for me. I didn't expect to make it this far.
The exhaustion I feel has more to do with the totality of the day rather than the run itself. I was up early this morning, long before my normal wake-up hour. Even with going to bed a bit early last night, the 8:00 AM start to the day was brutal for me. I barely managed to get out of the bathroom before we had to rush into the truck so we could make it to the run by our planned 9:30 AM arrival.
Once there, greeted by many friends, Ricky and I did the run with him pushing me part of the way, Tonny pushing me part of the way, and Brian pushing me part of the way. The odd thing is, even with others pushing, I was tired at the end. In fact I was tired by half way. Yet, thanks to those helping me, I complete the 5 KM roll in my manual chair. My neck was quite tired by the end, from the work needed to hold my head steady as the chair bounced and jounced along the uneven sidewalk.
The weather was wonderful; the air warm, a steady breeze coming off the reservoir, a few clouds here and there to keep the sunburn down. We rolled along a tree lined pathway right along the edge of the reservoir, the sidewalk dappled with sunlight, shaded much of the way. By the end, I needed a nap.
The nap was to come, but first I entertained. I asked those who walked with me to join me at home for pizza. They came to visit, and it was terrific. I love having them around. It was even better to see Ricky interacting with them. Then, an hour or so later, they left and I finally got a 2 hour nap.
Now it's time to do laundry, to prepare for tomorrow's voyage to Vancouver. Once laundry is done, I need to pack. And finally, I will have to take a shower, this time without assistance. My only concern is if the wheelchair slips on the wet floor as I attempt the post shower transfer. If that goes well, then I will sleep, get up tomorrow morning at 8:00 AM once again, and, after bathroom and dress, get into the truck and let Ricky drive for the first shift. I plan on sleeping some more.
The exhaustion I feel has more to do with the totality of the day rather than the run itself. I was up early this morning, long before my normal wake-up hour. Even with going to bed a bit early last night, the 8:00 AM start to the day was brutal for me. I barely managed to get out of the bathroom before we had to rush into the truck so we could make it to the run by our planned 9:30 AM arrival.
Once there, greeted by many friends, Ricky and I did the run with him pushing me part of the way, Tonny pushing me part of the way, and Brian pushing me part of the way. The odd thing is, even with others pushing, I was tired at the end. In fact I was tired by half way. Yet, thanks to those helping me, I complete the 5 KM roll in my manual chair. My neck was quite tired by the end, from the work needed to hold my head steady as the chair bounced and jounced along the uneven sidewalk.
The weather was wonderful; the air warm, a steady breeze coming off the reservoir, a few clouds here and there to keep the sunburn down. We rolled along a tree lined pathway right along the edge of the reservoir, the sidewalk dappled with sunlight, shaded much of the way. By the end, I needed a nap.
The nap was to come, but first I entertained. I asked those who walked with me to join me at home for pizza. They came to visit, and it was terrific. I love having them around. It was even better to see Ricky interacting with them. Then, an hour or so later, they left and I finally got a 2 hour nap.
Now it's time to do laundry, to prepare for tomorrow's voyage to Vancouver. Once laundry is done, I need to pack. And finally, I will have to take a shower, this time without assistance. My only concern is if the wheelchair slips on the wet floor as I attempt the post shower transfer. If that goes well, then I will sleep, get up tomorrow morning at 8:00 AM once again, and, after bathroom and dress, get into the truck and let Ricky drive for the first shift. I plan on sleeping some more.
Saturday, 11 June 2016
Ricky's Here
My son is visiting with me for a couple of days. He flew up last night from Abbotsford so he could walk with me in Betty's Run, and so he could help me on the drive down from Calgary to Vancouver. I'll be spending next week with my Mom and Ray. I am so happy to see him, to relax and spend some time just hanging out.
Ricky is turning into a fine young man. I have always believed in who he could be, and he is more than turning into that kind of person you want to have around. He is easy going, the anger of youth seeming to have left him almost complete. He is generous, more than willing to help where help is needed. He has turned into a tidy person who doesn't mind cleaning up around the apartment. That's a real shock to me, as I have not experienced this from him in the past.
What has impressed me the most with this trip is that he is paying his own way, completely. When he said he would come up, he asked if I would use my credit card to buy his ticket, saying that he would pay me back. The first thing he did when he got in the truck, when I picked him up at the airport, was not only to pay me back, but to give me some extra, just because. When I asked him about it, he said "I just want to do things right."
He has no expectations of me. He has asked me for nothing. He even went out and bought his own beer. Fortunately he will let me cook for him. As he says, even crippled and in a wheelchair, bound by the losses of ALS, I can still cook better than him. I smiled at that; it felt good to hear it. And then, this morning, he went and bought me a Chromecast; I used the extra money he gave me to pay for it, so it really is a gift from him. He's set it up and right now he is playing this awesome mix from the '60's and '70's. Once again I am surprised; this is a terrific music mix.
It means a great deal to me, to see him turn into the kind of man I always knew he could be. I thought I would not live long enough to see him mature into an adult. I thought ALS would take this from me, the pleasure of relating to him as a grown up. I thought I would never get a chance, yet here it is. He even admitted that he was a bit of a jerk when he was here for that first year of ALS. But I didn't need to hear that. I am so proud of what he is becoming. I am proud of all my children. I am very fortunate.
Ricky is turning into a fine young man. I have always believed in who he could be, and he is more than turning into that kind of person you want to have around. He is easy going, the anger of youth seeming to have left him almost complete. He is generous, more than willing to help where help is needed. He has turned into a tidy person who doesn't mind cleaning up around the apartment. That's a real shock to me, as I have not experienced this from him in the past.
What has impressed me the most with this trip is that he is paying his own way, completely. When he said he would come up, he asked if I would use my credit card to buy his ticket, saying that he would pay me back. The first thing he did when he got in the truck, when I picked him up at the airport, was not only to pay me back, but to give me some extra, just because. When I asked him about it, he said "I just want to do things right."
He has no expectations of me. He has asked me for nothing. He even went out and bought his own beer. Fortunately he will let me cook for him. As he says, even crippled and in a wheelchair, bound by the losses of ALS, I can still cook better than him. I smiled at that; it felt good to hear it. And then, this morning, he went and bought me a Chromecast; I used the extra money he gave me to pay for it, so it really is a gift from him. He's set it up and right now he is playing this awesome mix from the '60's and '70's. Once again I am surprised; this is a terrific music mix.
It means a great deal to me, to see him turn into the kind of man I always knew he could be. I thought I would not live long enough to see him mature into an adult. I thought ALS would take this from me, the pleasure of relating to him as a grown up. I thought I would never get a chance, yet here it is. He even admitted that he was a bit of a jerk when he was here for that first year of ALS. But I didn't need to hear that. I am so proud of what he is becoming. I am proud of all my children. I am very fortunate.
Friday, 10 June 2016
A Roof Top Patio
It's summer in Calgary, or at least approaching summer. It seems a bit early this year. Nonetheless summer means a proliferation of restaurant patios. Mostly these things bother me. They block the sidewalks such that it is difficult for me to get a wheelchair past. The tables are set so close that I am compelled to sit on the outer edge of things, right next to the entrance gates. And more times than not a patio fails in providing access to a wheelchair washroom. Oh, and the prices go up in many cases.
But not all are like this. The other day a friend of mine, Neil Mitchell, tagged an article by Avenue Calgary magazine on Facebook. The article was about the top 10 Patio Restaurants in Calgary. I read the article and noted that it said nothing about wheelchair access. So I posted in Neil's thread. Then I went a step further and posted a comment about wheelchair access on the Avenue Calgary Magazine Facebook page.
The initial response from Avenue Calgary Magazine was the usual "thank you for your comment". I don't respond well to that comment, so I posted back "So will you do anything about it?" Within a few minutes they had contacted all of the patio restaurants to discuss wheelchair access, and updated the online article. Hooray for the Internet and rapid response!
The simple fact that a restaurant says it is wheelchair accessible means very little to me. It's not just wheelchair access to the serving area, but access to a bathroom and space between tables so I can get in. I have found that most restaurants don't understand this. So I was skeptical, but I though would try one of them that looked interesting; the Roof Top Bar @ Simmons. The Simmons building is an old mattress factory in Calgary's revitalized East Village. I'd never been there. They claimed wheelchair access, so I asked Neil if he wanted to meet me there last night. He did. We went.
I have to say, I am incredibly impressed with how the Roof Top Bar @ Simmons is laid out. There are the high bar tables, but there are also plenty of lower tables, all arranged to provide a terrific view of the Bow River and the downtown skyline. The elevator, which serves all three floors of the building along with the basement, is one of those glass ones, where you can see each floor as you go by, the tables and space enticing on all three levels, was large and easy for me to access.
When I got to the third floor, the eponymous Roof Top Bar, I told the hostess that I would like to sit near the edge, close to the river. She and another young man quickly disposed of excess chairs and set me up with a minimum of fuss. Getting between tables was a bit tight, but no more for me than for almost anyone else. No big deal.
But then I had to go to the bathroom. I don't know about you, but one sip of beer can do it to me some days. This was one of them. So I turned my PWC about and headed for the upstairs bathroom, the one on the same floor as the patio. As it turns out, this is not a handicap bathroom, much to the surprise of the on-duty manager. They've only been open for a few weeks, and nobody had noticed this before. Also, the well setup wheelchair bathroom was with the main bathrooms in the basement, so most people would have gone there regardless.
So I went to the basement. Access to the wheelchair bathroom wasn't great, perhaps a 7 out of 10, but still better than what I have been through in a great many other places. The doors opened the right way. The stall was large. The only problem was toilet placement; it was perpendicular to what would have been best for me, but probably the best place for most wheelchair users.
Once I got back upstairs, I noticed that some of the guests had blankets, ready for the cool of the evening. The Roof Top Bar @ Simmons provides guests with blankets! Oh, and sunglasses too if you need them, since the positioning of the tables means someone is looking directly at the setting sun at the end of the day. Terrific idea! The blanket idea is even more important for those in wheelchairs, as we tend to get cold easier than most.
I guess the only thing I would be critical of, if this is even critical, has nothing to do with wheelchair access. I found their draught beer choices decidedly limited, with an IPA and a lager being the only selections. Their menu is limited, just a few main items and perhaps a half dozen small plates. But still, the food was good and the view was wonderful.
For the first time in as long as I can remember, I find myself recommending a place, for wheelchair access, for ambiance, and for repast. If you are in Calgary, or visiting soon, I suggest you try it, especially if you are in a wheelchair. And tell them I sent you! It won't get you a free beer or anything, but it will let them know that people in wheelchairs talk to one another, and we like a good patio too.
But not all are like this. The other day a friend of mine, Neil Mitchell, tagged an article by Avenue Calgary magazine on Facebook. The article was about the top 10 Patio Restaurants in Calgary. I read the article and noted that it said nothing about wheelchair access. So I posted in Neil's thread. Then I went a step further and posted a comment about wheelchair access on the Avenue Calgary Magazine Facebook page.
The initial response from Avenue Calgary Magazine was the usual "thank you for your comment". I don't respond well to that comment, so I posted back "So will you do anything about it?" Within a few minutes they had contacted all of the patio restaurants to discuss wheelchair access, and updated the online article. Hooray for the Internet and rapid response!
The simple fact that a restaurant says it is wheelchair accessible means very little to me. It's not just wheelchair access to the serving area, but access to a bathroom and space between tables so I can get in. I have found that most restaurants don't understand this. So I was skeptical, but I though would try one of them that looked interesting; the Roof Top Bar @ Simmons. The Simmons building is an old mattress factory in Calgary's revitalized East Village. I'd never been there. They claimed wheelchair access, so I asked Neil if he wanted to meet me there last night. He did. We went.
I have to say, I am incredibly impressed with how the Roof Top Bar @ Simmons is laid out. There are the high bar tables, but there are also plenty of lower tables, all arranged to provide a terrific view of the Bow River and the downtown skyline. The elevator, which serves all three floors of the building along with the basement, is one of those glass ones, where you can see each floor as you go by, the tables and space enticing on all three levels, was large and easy for me to access.
When I got to the third floor, the eponymous Roof Top Bar, I told the hostess that I would like to sit near the edge, close to the river. She and another young man quickly disposed of excess chairs and set me up with a minimum of fuss. Getting between tables was a bit tight, but no more for me than for almost anyone else. No big deal.
But then I had to go to the bathroom. I don't know about you, but one sip of beer can do it to me some days. This was one of them. So I turned my PWC about and headed for the upstairs bathroom, the one on the same floor as the patio. As it turns out, this is not a handicap bathroom, much to the surprise of the on-duty manager. They've only been open for a few weeks, and nobody had noticed this before. Also, the well setup wheelchair bathroom was with the main bathrooms in the basement, so most people would have gone there regardless.
So I went to the basement. Access to the wheelchair bathroom wasn't great, perhaps a 7 out of 10, but still better than what I have been through in a great many other places. The doors opened the right way. The stall was large. The only problem was toilet placement; it was perpendicular to what would have been best for me, but probably the best place for most wheelchair users.
Once I got back upstairs, I noticed that some of the guests had blankets, ready for the cool of the evening. The Roof Top Bar @ Simmons provides guests with blankets! Oh, and sunglasses too if you need them, since the positioning of the tables means someone is looking directly at the setting sun at the end of the day. Terrific idea! The blanket idea is even more important for those in wheelchairs, as we tend to get cold easier than most.
I guess the only thing I would be critical of, if this is even critical, has nothing to do with wheelchair access. I found their draught beer choices decidedly limited, with an IPA and a lager being the only selections. Their menu is limited, just a few main items and perhaps a half dozen small plates. But still, the food was good and the view was wonderful.
For the first time in as long as I can remember, I find myself recommending a place, for wheelchair access, for ambiance, and for repast. If you are in Calgary, or visiting soon, I suggest you try it, especially if you are in a wheelchair. And tell them I sent you! It won't get you a free beer or anything, but it will let them know that people in wheelchairs talk to one another, and we like a good patio too.
Thursday, 9 June 2016
I Hate ALS
My left shoulder is so painful today. I am about to take a couple of Tylenol, but stronger drugs may be in order by the end of the day. I think I may have damaged one of the bones in my left hand too. It's not broken, at least I don't think it is, but it sure hurts. All of this from a slipped transfer board while moving from my PWC to my manual chair.
Things like this convince me that I am becoming less and less safe in my own home. I am beginning to take seriously questions about falling or becoming immobilized. I'm not yet ready to capitulate to monitoring, but I understand more that need for it. I can see where it will be necessary at some point. I wonder how long I can live on my own. And I hate it.
I hate the fact that I am slowly and steadily becoming completely dependent on others for my life and living. I hate the fact that something as simple as moving from one chair to another has left me in such physical disrepair. I hate the fact that I am slowly losing all that I can do, having it replaced with the need for others to do for me. I hate the feeling of worthlessness which goes with this disease.
Perhaps the worst part of all of this is my increasing inability to do things on my own schedule. If I want to have a shower, I can either wait for home care on a Monday, Wednesday or Friday, or I can risk the transfer, something that is becoming increasingly dangerous. If I want to do something with my wine, I have to wait for someone to come over and lift the carboys for me; I am completely unable to make that lift. If I want to sweep my floor, make my bed, put away my dishes, get something from the top shelf; all of these things are now beyond me.
I hate ALS.
Things like this convince me that I am becoming less and less safe in my own home. I am beginning to take seriously questions about falling or becoming immobilized. I'm not yet ready to capitulate to monitoring, but I understand more that need for it. I can see where it will be necessary at some point. I wonder how long I can live on my own. And I hate it.
I hate the fact that I am slowly and steadily becoming completely dependent on others for my life and living. I hate the fact that something as simple as moving from one chair to another has left me in such physical disrepair. I hate the fact that I am slowly losing all that I can do, having it replaced with the need for others to do for me. I hate the feeling of worthlessness which goes with this disease.
Perhaps the worst part of all of this is my increasing inability to do things on my own schedule. If I want to have a shower, I can either wait for home care on a Monday, Wednesday or Friday, or I can risk the transfer, something that is becoming increasingly dangerous. If I want to do something with my wine, I have to wait for someone to come over and lift the carboys for me; I am completely unable to make that lift. If I want to sweep my floor, make my bed, put away my dishes, get something from the top shelf; all of these things are now beyond me.
I hate ALS.
Wednesday, 8 June 2016
One Foot Of Movement
Why am I here? Why am I still alive while so many others die around me? What is the purpose in me keeping this grotesque thing which once was a body, going? I can't move my legs. My arms are so weak that wheeling up and down even a short stretch of sidewalk is almost too much for me. I can barely dress myself, barely make any sort of a transfer out of my wheelchair, barely sit up straight.
The other evening while trying to take my shirt off, I got it halfway, over my head and covering my face, when I lost my balance and fell over backwards. There I was, sweaty shirt all over me, my arms stuck, unable to pull hard enough to defeat the stick of the shirt. I rolled one way, but couldn't gain any traction. I rolled the other way, still unable to break the shirt free of my skin. Finally, even though I couldn't really see what I was doing, I managed to grab the edge of the mattress, then my M-rail, and pull myself vertical. After a rest period, I tried again with the shirt. Success, matched with exhaustion.
Yesterday while transferring from my power wheelchair to my manual chair, my transfer board slipped off the PWC. There I was, halfway along the board, barely in place on my manual chair. It took me nearly a half hour of wiggling and shifting to get my fat ass along the board and into a place where I could move my manual chair. I rolled over to my couch, lifted the transfer board into place, and transferred. Then I did nothing for almost an hour, too exhausted to even move. After a long rest, I got back into my manual chair and got on with my day.
That exhausted feeling haunted me all evening, well into my sleep. I lacked energy for breathing, for moving, for speech. For the first time ever I went to bed wondering if I would be awake in the morning. I wondered if I would keep breathing all night. I did, but my shoulders still hurt, my arms still hurt, and I feel more than just a little defeated.
Here is the odd thing. I am a tough son-of-a-bitch. Sorry, Mom; no implications on you at all. It's me. Even in a tremendously difficult situation, I know that a foot of movement is only 12 one inch moves, or 24 half inch moves, or 48 quarter inch moves. So I start with that small part and do it until I make the full foot. But even with this, I feel like ALS is winning. I guess it is. I don't like it.
The other evening while trying to take my shirt off, I got it halfway, over my head and covering my face, when I lost my balance and fell over backwards. There I was, sweaty shirt all over me, my arms stuck, unable to pull hard enough to defeat the stick of the shirt. I rolled one way, but couldn't gain any traction. I rolled the other way, still unable to break the shirt free of my skin. Finally, even though I couldn't really see what I was doing, I managed to grab the edge of the mattress, then my M-rail, and pull myself vertical. After a rest period, I tried again with the shirt. Success, matched with exhaustion.
Yesterday while transferring from my power wheelchair to my manual chair, my transfer board slipped off the PWC. There I was, halfway along the board, barely in place on my manual chair. It took me nearly a half hour of wiggling and shifting to get my fat ass along the board and into a place where I could move my manual chair. I rolled over to my couch, lifted the transfer board into place, and transferred. Then I did nothing for almost an hour, too exhausted to even move. After a long rest, I got back into my manual chair and got on with my day.
That exhausted feeling haunted me all evening, well into my sleep. I lacked energy for breathing, for moving, for speech. For the first time ever I went to bed wondering if I would be awake in the morning. I wondered if I would keep breathing all night. I did, but my shoulders still hurt, my arms still hurt, and I feel more than just a little defeated.
Here is the odd thing. I am a tough son-of-a-bitch. Sorry, Mom; no implications on you at all. It's me. Even in a tremendously difficult situation, I know that a foot of movement is only 12 one inch moves, or 24 half inch moves, or 48 quarter inch moves. So I start with that small part and do it until I make the full foot. But even with this, I feel like ALS is winning. I guess it is. I don't like it.
Tuesday, 7 June 2016
Responsible Behaviour, I Think Not
I am in a quandry, a predicament, a practical dilemma. Of course it arises out of someone doing something extremely generous for me. A friend has given me a gift of $400 with no strings attached, completely unexpectedly, telling me it was "just because". The only comment for this gift was the one that came with the e-mail Interac notification, that I should "Use as needed, travel?".
First of all, the kindness and generousity of this gift is wonderful, especially in its completely unexpected form. I had not asked; I did not expect; I was not aware. It just magically arrived as an Interac transfer in my email. Surprised and shocked, I immediately called my benefactor and asked "why", and was once again told "just because", "no strings, no reason".
So my quandry is this. What do I do with this wonderful gift of $400? You see, it's very clear that there is no target for this money. As the email said, I can use it for whatever I need, be that bills, booze, or travel. I can squander it on refilling my depleted liquor cabinet. I can use it for gas for a road trip in my truck. I can buy something nice, something very nice, all for myself. Or I can be responsible, using it to pay down my credit card or catch up on my overdue condo fees. And then there is July; next month is a month with three mortgage payments. This money would cover most of that.
You see, I still have this responsible person somewhere inside me, telling me to do responsible things as I have done most of my life. In the past a gift like this would have gone to catching up on bills or purchasing needed things for my family, minus, of course, a very small portion as a treat for myself. But these days being responsible doesn't seem like the best of ideas; it hasn't helped me so far. I still have ALS, notwithstanding all my responsible behaviour. Nor has being irresponsible made a great deal of difference in my life. In fact irresponsibility seems to have improved my quality of life.
I know one thing for certain. This money will not be put aside for a rainy day. I am not investing it in my retirement plan. I will not save it for the future. I have no future. I only have the present, and this present to spend in the present.
My preference would be to spend it unwisely, or perhaps combine it with some other cash from friends and family to do another road trip. It's certainly a good start. Maybe I can head off to northern Manitoba in July, a place I have not been since I was 18 years old. Perhaps one more trip down to California, in the fall, but then again that's several months away and who knows what will happen between now and then.
Of all the places to be, this quandry is a good one. It's given me some fun choices to make, with no expectations of any outcome. I will savour this dish, tasting the decision slowly, parceling the treat out one small piece at a time. I don't think I will behave responsibly, at least not this time.
First of all, the kindness and generousity of this gift is wonderful, especially in its completely unexpected form. I had not asked; I did not expect; I was not aware. It just magically arrived as an Interac transfer in my email. Surprised and shocked, I immediately called my benefactor and asked "why", and was once again told "just because", "no strings, no reason".
So my quandry is this. What do I do with this wonderful gift of $400? You see, it's very clear that there is no target for this money. As the email said, I can use it for whatever I need, be that bills, booze, or travel. I can squander it on refilling my depleted liquor cabinet. I can use it for gas for a road trip in my truck. I can buy something nice, something very nice, all for myself. Or I can be responsible, using it to pay down my credit card or catch up on my overdue condo fees. And then there is July; next month is a month with three mortgage payments. This money would cover most of that.
You see, I still have this responsible person somewhere inside me, telling me to do responsible things as I have done most of my life. In the past a gift like this would have gone to catching up on bills or purchasing needed things for my family, minus, of course, a very small portion as a treat for myself. But these days being responsible doesn't seem like the best of ideas; it hasn't helped me so far. I still have ALS, notwithstanding all my responsible behaviour. Nor has being irresponsible made a great deal of difference in my life. In fact irresponsibility seems to have improved my quality of life.
I know one thing for certain. This money will not be put aside for a rainy day. I am not investing it in my retirement plan. I will not save it for the future. I have no future. I only have the present, and this present to spend in the present.
My preference would be to spend it unwisely, or perhaps combine it with some other cash from friends and family to do another road trip. It's certainly a good start. Maybe I can head off to northern Manitoba in July, a place I have not been since I was 18 years old. Perhaps one more trip down to California, in the fall, but then again that's several months away and who knows what will happen between now and then.
Of all the places to be, this quandry is a good one. It's given me some fun choices to make, with no expectations of any outcome. I will savour this dish, tasting the decision slowly, parceling the treat out one small piece at a time. I don't think I will behave responsibly, at least not this time.
Monday, 6 June 2016
The World Did Not End Today
It is June 6th. It is the 72nd anniversary of D-Day. It is also the Supreme Court of Canada's deadline for enactment of new legislation governing Physician Assisted Dying. It is ironic that on this day, when so many men gave their lives willingly for my freedom, that I would seek to use that freedom to willingly take my life. Yet that is the very thing about freedom. It does not discriminate. Freedom of conscience, freedom of choice; these are the hallmarks of a truly democratic and free society.
With the passing of this date, Physician Assisted Dying is now completely legal in this country with no restrictions. Anyone who can find a physician to perform the procedure can end his or her own life without restriction. Of course there is that little hiccup in the process; you have to find a physician willing to perform the procedure. Given the absence of a federal framework, I suspect that will be difficult.
Fortunately in Canada we have a combined health care system. While the federal government may may laws about health care, the application of same is a provincial matter. In this circumstance most provinces already have guidelines with respect to Physician Assisted Dying. Nonetheless, one must still find a doctor to do the job. With the clouds in this sky, the mud in this water, the lack of clarity in process, it can put a lot of doctors in a position where doing nothing is better than risking it.
It reminds me of the abortion issue in this regard. There is no law restricting abortion in Canada, nor setting a framework up for the delivery of abortion services. This mean each province has its own rules and regulations, creating a patchwork where access to abortion services has actually gone down in many places, forcing some desperate women to travel out of their province, even out of Canada, for this service, bearing the cost of it themselves.
Many faith based medical institutions refuse to provide the service at all, notwithstanding that it is fully legal and considered a medical matter between doctor and patient. Some provinces have limited coverage; PEI has had no abortion services since 1982. Most of these medical procedures are done in major centers, leaving those in rural settings forced to travel far from home at a difficult time.
That's my worry now about Physician Assisted Dying. If Bill C-14 is not passed, with or without amendment, will we fall into the same grey abyss as we have with abortion services? Will I be forced to go to another province when my time comes, leaving my home behind me? Will I be forced into a hospital, a cold clinical setting, rather than the warmth and safety of my own bed for my last days?
No, the world did not end. It just got more confusing for people like me. It just got more difficult at a time in my life when difficulty is the last thing I need. Physician Assisted Dying is now completely legal. It's also just become a lot more complicated.
With the passing of this date, Physician Assisted Dying is now completely legal in this country with no restrictions. Anyone who can find a physician to perform the procedure can end his or her own life without restriction. Of course there is that little hiccup in the process; you have to find a physician willing to perform the procedure. Given the absence of a federal framework, I suspect that will be difficult.
Fortunately in Canada we have a combined health care system. While the federal government may may laws about health care, the application of same is a provincial matter. In this circumstance most provinces already have guidelines with respect to Physician Assisted Dying. Nonetheless, one must still find a doctor to do the job. With the clouds in this sky, the mud in this water, the lack of clarity in process, it can put a lot of doctors in a position where doing nothing is better than risking it.
It reminds me of the abortion issue in this regard. There is no law restricting abortion in Canada, nor setting a framework up for the delivery of abortion services. This mean each province has its own rules and regulations, creating a patchwork where access to abortion services has actually gone down in many places, forcing some desperate women to travel out of their province, even out of Canada, for this service, bearing the cost of it themselves.
Many faith based medical institutions refuse to provide the service at all, notwithstanding that it is fully legal and considered a medical matter between doctor and patient. Some provinces have limited coverage; PEI has had no abortion services since 1982. Most of these medical procedures are done in major centers, leaving those in rural settings forced to travel far from home at a difficult time.
That's my worry now about Physician Assisted Dying. If Bill C-14 is not passed, with or without amendment, will we fall into the same grey abyss as we have with abortion services? Will I be forced to go to another province when my time comes, leaving my home behind me? Will I be forced into a hospital, a cold clinical setting, rather than the warmth and safety of my own bed for my last days?
No, the world did not end. It just got more confusing for people like me. It just got more difficult at a time in my life when difficulty is the last thing I need. Physician Assisted Dying is now completely legal. It's also just become a lot more complicated.
Sunday, 5 June 2016
I Judge Myself
I have my air conditioner running here in my apartment. This small apartment gets very warm, even in the coldest part of winter, heated, as it is, on five of it's six sides, with the sixth side exposed to the morning and afternoon sun. Often it will be below freezing outside and we will open the patio door if we have more than a couple of people visiting.
Yesterday, today, and for the rest of this week we will have hot weather, at least hot for Calgary. It is 24C outside right now. Tomorrow will top out at 27C and the rest of the week will be even hotter. Last night I set the A/C on and let it run all night. Today my apartment is nice and cool, even a bit chilly to tell the truth. Just now, in the paragraph break, I switched the A/C off, turned on the fan and opened the patio door. We've reached the peak temperature, and, more importantly, the sun is past the point where it is heating things up in here.
The real reason for turning off the A/C is the cost. I find myself in a place where I need to decide if I want to spend the money on electricity for A/C, or if I want to use it for something else. You might say to yourself "it's only a few bucks", and you would be right. Unfortunately I find myself in a place these days where a few bucks can make a big difference.
I never thought I would find myself in this place. I've always done a pretty good job in looking after myself, my family, those around me. I've always managed to make the money when I needed it, having it around not just for necessities, but for those special things too. Now I find myself truly wondering if I really need to be this cool. Perhaps hot, with a few extra bucks at the end of the month, is not such a bad thing.
This is a pretty bad place for me. I feel like such a loser, unable to make my debts or care for myself. I feel like I have failed at life, like I must have really screwed up to get here. I know that this is not true, or at least I can tell myself this is not true. I know that ALS has destroyed my life. Yet somehow I feel like I could have done better, perhaps could have worked harder. I judge myself and find myself wanting.
Yesterday, today, and for the rest of this week we will have hot weather, at least hot for Calgary. It is 24C outside right now. Tomorrow will top out at 27C and the rest of the week will be even hotter. Last night I set the A/C on and let it run all night. Today my apartment is nice and cool, even a bit chilly to tell the truth. Just now, in the paragraph break, I switched the A/C off, turned on the fan and opened the patio door. We've reached the peak temperature, and, more importantly, the sun is past the point where it is heating things up in here.
The real reason for turning off the A/C is the cost. I find myself in a place where I need to decide if I want to spend the money on electricity for A/C, or if I want to use it for something else. You might say to yourself "it's only a few bucks", and you would be right. Unfortunately I find myself in a place these days where a few bucks can make a big difference.
I never thought I would find myself in this place. I've always done a pretty good job in looking after myself, my family, those around me. I've always managed to make the money when I needed it, having it around not just for necessities, but for those special things too. Now I find myself truly wondering if I really need to be this cool. Perhaps hot, with a few extra bucks at the end of the month, is not such a bad thing.
This is a pretty bad place for me. I feel like such a loser, unable to make my debts or care for myself. I feel like I have failed at life, like I must have really screwed up to get here. I know that this is not true, or at least I can tell myself this is not true. I know that ALS has destroyed my life. Yet somehow I feel like I could have done better, perhaps could have worked harder. I judge myself and find myself wanting.
Saturday, 4 June 2016
Religious Belief
I have friends staying with me this weekend, staying here in my apartment while they attend the Umbrella 2016 conference at a local church. Umbrella 2016 is a Christian conference focused on creating an inclusive society for people with disabilities or handicaps. Needless to say, my friends are committed Christians, and I respect their faith.
Last night, after a day of seminars, sessions, and entertainment, they arrived home where we started discussing Bill C-14, the bill on assisted dying. Somehow this conversation became conflated with a conversation on abortion. It seems to be happening these days, that one discussion draws out another for comparisons. It's interesting that both touchy topics are focused on controlling what other people do with their bodies and their lives. The only real difference is that with abortion there is a potential third person, there in that woman's womb.
Abortion is so touchy, because not only does it hit on the perceptions of the sanctity of human life, but it also poses the extremely difficult question as to "when life begins". Physician Assisted Dying at least has the benefit of being a relatively singular question, whether or not an individual should be in control of the timing of his or her death.
For me, I take what might be a very different view on all of this. While I am definitely not a nihilist, I do not believe that we are made by God for a special purpose. If that were true, then why did God make so many incredibly cruel and horrible people? Instead, I believe that we are all grains of sand in the giant desert of humanity, blown by the winds of time, each of us miniscule and particularly insignificant. This does not mean our life has no purpose; I believe we define our purpose in life, then go on to fulfill it. Some of us need to believe we were created for a purpose, and so must believe in a God who did that creation. I am not that person.
The birth or death of one person is inconsequential over the span of history. Very few people impact their own history. Some impact the history of a generation, some the history of centuries, and a rare few the history of millenia. But humans have been around for 200,000 years. Even the greatest of figures in our fairly recent written history have only impacted us for a couple thousand years; there's a lot more where that came from, and a lot more where we are going. Somewhere in the realm of 100 billion people have lived and died in that time. There's been a lot of us and, barring catastrophe, there will be a lot more.
So to attempt to control the living and dying of one person, me, is rather silly. In the grand scheme of time and space, it matters not a whit. If you say "but it's wrong", I will ask why. If you say it is a sin, I will ask according to who. If you say God has a purpose for my life, I will suggest perhaps His purpose is for me to be a model for people who choose to end their life.
There have always been cultures rife with their attempts to control their own members. There have been, and still are, cultures where your access to health care depends on your skin colour. There have been, and still are, cultures where your freedom and independence depends on your gender. There have been, and still are, cultures where your very life depends on which version of God or gods you believe in. It seems to me that, for most cultures and religions, life matters very little and control matters a great deal.
In the end, we all will live until we die. Some may have religions which say there is life after death; one day you will know for sure. As for today, please make no rules or laws based on your beliefs which force me to contravene my own beliefs. I am alive and soon will die; the same is true for you. Please let's respect one another along the way. That is my religion.
Last night, after a day of seminars, sessions, and entertainment, they arrived home where we started discussing Bill C-14, the bill on assisted dying. Somehow this conversation became conflated with a conversation on abortion. It seems to be happening these days, that one discussion draws out another for comparisons. It's interesting that both touchy topics are focused on controlling what other people do with their bodies and their lives. The only real difference is that with abortion there is a potential third person, there in that woman's womb.
Abortion is so touchy, because not only does it hit on the perceptions of the sanctity of human life, but it also poses the extremely difficult question as to "when life begins". Physician Assisted Dying at least has the benefit of being a relatively singular question, whether or not an individual should be in control of the timing of his or her death.
For me, I take what might be a very different view on all of this. While I am definitely not a nihilist, I do not believe that we are made by God for a special purpose. If that were true, then why did God make so many incredibly cruel and horrible people? Instead, I believe that we are all grains of sand in the giant desert of humanity, blown by the winds of time, each of us miniscule and particularly insignificant. This does not mean our life has no purpose; I believe we define our purpose in life, then go on to fulfill it. Some of us need to believe we were created for a purpose, and so must believe in a God who did that creation. I am not that person.
The birth or death of one person is inconsequential over the span of history. Very few people impact their own history. Some impact the history of a generation, some the history of centuries, and a rare few the history of millenia. But humans have been around for 200,000 years. Even the greatest of figures in our fairly recent written history have only impacted us for a couple thousand years; there's a lot more where that came from, and a lot more where we are going. Somewhere in the realm of 100 billion people have lived and died in that time. There's been a lot of us and, barring catastrophe, there will be a lot more.
So to attempt to control the living and dying of one person, me, is rather silly. In the grand scheme of time and space, it matters not a whit. If you say "but it's wrong", I will ask why. If you say it is a sin, I will ask according to who. If you say God has a purpose for my life, I will suggest perhaps His purpose is for me to be a model for people who choose to end their life.
There have always been cultures rife with their attempts to control their own members. There have been, and still are, cultures where your access to health care depends on your skin colour. There have been, and still are, cultures where your freedom and independence depends on your gender. There have been, and still are, cultures where your very life depends on which version of God or gods you believe in. It seems to me that, for most cultures and religions, life matters very little and control matters a great deal.
In the end, we all will live until we die. Some may have religions which say there is life after death; one day you will know for sure. As for today, please make no rules or laws based on your beliefs which force me to contravene my own beliefs. I am alive and soon will die; the same is true for you. Please let's respect one another along the way. That is my religion.
Friday, 3 June 2016
I Didn't Ask For ALS, But I Got It Anyways
This is my second attempt at writing today's blog post. After reading and re-reading my first attempt, I came to see how ungrateful, ungracious, and unkind the words were. I wrote while angry, not always a bad thing to do. But I did not let enough time pass for my anger to be replaced by gratitude. I do not want to be that man, that bitter, ungrateful man trapped in a wheelchair. That's not me. I'm still here.
I have had an amazing life, the kind of life people could write books about. I've walked where few have walked, sailed where few have sailed, seen places near untouched by the hand of man. I've hunted wild game and had it hunt me back. I've caught fish bigger than a grown man. I've seen the salmon spawn, the whales breach, the eagles snatch a meal from the sea. I've walked on the desert sands and touched the Beaufort Sea. I have not done it all, there is so much more out there. Nor am I happy with how my life is ending.
Yesterday I wrote about how much I missed traveling and adventure. I've been lucky in this respect. Thanks to the generosity of many and the help from many, I have continued to travel and seek adventure well past the time when ALS destroyed me. Yet I still wish I could still travel. That's all. I wish ALS hadn't stolen my ability to earn the income I once earned, an income which made travel very affordable. I wish ALS hadn't taken so long as to have me outlive my financial capacity. I wish I had died on time; that was the plan, but nothing with this illness goes according to plan. ALS dropped an atom bomb into my life plan, laid waste to everything I thought I could do.
There is so much that has been taken from me by ALS. I wish I wasn't trapped in this wheelchair, unable to walk and soon unable to drive. I wish I could still sail on my sailboat, holding the lines of the foresail just to feel the power of the wind, sensing the water pulling on the tiller firm in my hand. I wish I hadn't gotten this disease. I didn't ask for ALS; I have it, and there is nothing I can do about it.
Here is a bit of an exercise for you. I want to you pick the thing you most enjoy doing in life. In my family it would be things like playing golf, singing, fixing things and doing projects, cooking. So pick yours. Now write it down on a piece of paper. This is important; writing it down makes it real whereas only thinking about it makes it forgettable. Done that? Good. Now pick your second favourite thing; write it down. For me, boating with my kids was first, then traveling was second, usually with family too. And finally, pick a third, and write it down too. For me it was fishing and hunting.
Now I want you to promise me that you will no longer do those things, until the day I die. That's right, you can no longer do the things you love until I am nothing but ashes and dust. Each day you will think about the things you love to do, but you cannot do them. Through no fault of your own, they will be taken from you. Now ask yourself the cruelest question. With this gone from your life until I die, how long do you want me to live? You see, I ask myself that question every single day. How long do I want to live like this?
Let's take it a step further. This is going to take real courage on your part; take the money that you would spend on your first, second, and third favourite things in life, and send it to me. Now I have the money to do what I like to do, but you, through no fault of your own, no longer have the money and are no longer able to do what you love to do. Now how long do you want me to live?
Of course this is just an exercise. Nobody wants to give up what they love to do, not even me. Nobody wants to lose their career, their ability to earn a living and enjoy the benefits of their work, not even me. Nobody wants to lose their financial well being through no fault of their own, not even me.
This won't help you understand what it is like to be dying from ALS, not even close. This exercise doesn't cover the physical and psychological damage of this disease, nor does it cover the daily incremental death of this disease. All it does is, perhaps, help you understand just a little why I might wish some things now and again. It might help you understand how frustrated I am. And if I get lucky, you might send me some money on a regular basis, so I can travel.
If my anger and frustration distresses you, imagine what it does to me. I have to live with ALS.
I have had an amazing life, the kind of life people could write books about. I've walked where few have walked, sailed where few have sailed, seen places near untouched by the hand of man. I've hunted wild game and had it hunt me back. I've caught fish bigger than a grown man. I've seen the salmon spawn, the whales breach, the eagles snatch a meal from the sea. I've walked on the desert sands and touched the Beaufort Sea. I have not done it all, there is so much more out there. Nor am I happy with how my life is ending.
Yesterday I wrote about how much I missed traveling and adventure. I've been lucky in this respect. Thanks to the generosity of many and the help from many, I have continued to travel and seek adventure well past the time when ALS destroyed me. Yet I still wish I could still travel. That's all. I wish ALS hadn't stolen my ability to earn the income I once earned, an income which made travel very affordable. I wish ALS hadn't taken so long as to have me outlive my financial capacity. I wish I had died on time; that was the plan, but nothing with this illness goes according to plan. ALS dropped an atom bomb into my life plan, laid waste to everything I thought I could do.
There is so much that has been taken from me by ALS. I wish I wasn't trapped in this wheelchair, unable to walk and soon unable to drive. I wish I could still sail on my sailboat, holding the lines of the foresail just to feel the power of the wind, sensing the water pulling on the tiller firm in my hand. I wish I hadn't gotten this disease. I didn't ask for ALS; I have it, and there is nothing I can do about it.
Here is a bit of an exercise for you. I want to you pick the thing you most enjoy doing in life. In my family it would be things like playing golf, singing, fixing things and doing projects, cooking. So pick yours. Now write it down on a piece of paper. This is important; writing it down makes it real whereas only thinking about it makes it forgettable. Done that? Good. Now pick your second favourite thing; write it down. For me, boating with my kids was first, then traveling was second, usually with family too. And finally, pick a third, and write it down too. For me it was fishing and hunting.
Now I want you to promise me that you will no longer do those things, until the day I die. That's right, you can no longer do the things you love until I am nothing but ashes and dust. Each day you will think about the things you love to do, but you cannot do them. Through no fault of your own, they will be taken from you. Now ask yourself the cruelest question. With this gone from your life until I die, how long do you want me to live? You see, I ask myself that question every single day. How long do I want to live like this?
Let's take it a step further. This is going to take real courage on your part; take the money that you would spend on your first, second, and third favourite things in life, and send it to me. Now I have the money to do what I like to do, but you, through no fault of your own, no longer have the money and are no longer able to do what you love to do. Now how long do you want me to live?
Of course this is just an exercise. Nobody wants to give up what they love to do, not even me. Nobody wants to lose their career, their ability to earn a living and enjoy the benefits of their work, not even me. Nobody wants to lose their financial well being through no fault of their own, not even me.
This won't help you understand what it is like to be dying from ALS, not even close. This exercise doesn't cover the physical and psychological damage of this disease, nor does it cover the daily incremental death of this disease. All it does is, perhaps, help you understand just a little why I might wish some things now and again. It might help you understand how frustrated I am. And if I get lucky, you might send me some money on a regular basis, so I can travel.
If my anger and frustration distresses you, imagine what it does to me. I have to live with ALS.
Thursday, 2 June 2016
Travel No More
Katherine is on her way to Dublin today. I envy her. Ireland is one of the places on my bucket list. I would love to spend a week or two on that isle of emerald green. A few days in Dublin, a few days in Belfast, a week or so wandering around from town to town, exploring the ancient, enjoying the new, trying pubs and ales everywhere I went.
I am still in love with the excitement of travel, the adventure of seeing new places. I still have many places on my list which I have not yet seen, and would like to see. Ireland, Australia, Southeast Asia, China, north and central Africa, South America. If I could, I would love to take a cruise around Cape Horn, to see the Tierra Del Fuego.
There are so many places, and so little time. I've had the good fortune to see a great many already, to go places most people never see, to wander lands touched only by a handful of people. Yet still I have this thirst within me, this unquenchable desire to see just one more place, to explore once again. It may seem selfish, or even ungrateful for all that I have seen and done, but I cannot deny this feeling within me.
Even when I cannot travel, I can still adventure, still explore nearby. Yesterday, for example, I was invited to a friend's place for dinner. Rather than take my truck, I took my power wheelchair. I have to get used to using it more, as I know I will eventually be forced that way. After a terrific dinner and a lovely walk with my daughter, Kate, I headed home. Only this time, rather than take public transit, I used my PWC for the whole trip, a voyage of almost two hours.
I rolled my way through and out of downtown Calgary, across the Bow River. I took the riverside pathway as far as I could before turning up the hill towards home. I chewed through 50% of my battery on that hill alone, a frighteningly slow grind up a sharp, unforgiving angle. When I got home, I felt a sense of relief, and of accomplishment. While the world is slowly closing in on me, I don't have to live like it. While my explorations and travels are not far away, my mind and my will can still take me to places I have not seen before.
I am slowly becoming trapped by this world of ALS, living with a monster which works continually to restrict my life. At the same time my mind and my will continue to be alive and free. It's hard and it hurts, not to be able to travel as I once did. I am compelled by circumstance. So I do what I can, take what I can, and live what I can. But I would really like to go to Ireland.
I am still in love with the excitement of travel, the adventure of seeing new places. I still have many places on my list which I have not yet seen, and would like to see. Ireland, Australia, Southeast Asia, China, north and central Africa, South America. If I could, I would love to take a cruise around Cape Horn, to see the Tierra Del Fuego.
There are so many places, and so little time. I've had the good fortune to see a great many already, to go places most people never see, to wander lands touched only by a handful of people. Yet still I have this thirst within me, this unquenchable desire to see just one more place, to explore once again. It may seem selfish, or even ungrateful for all that I have seen and done, but I cannot deny this feeling within me.
Even when I cannot travel, I can still adventure, still explore nearby. Yesterday, for example, I was invited to a friend's place for dinner. Rather than take my truck, I took my power wheelchair. I have to get used to using it more, as I know I will eventually be forced that way. After a terrific dinner and a lovely walk with my daughter, Kate, I headed home. Only this time, rather than take public transit, I used my PWC for the whole trip, a voyage of almost two hours.
I rolled my way through and out of downtown Calgary, across the Bow River. I took the riverside pathway as far as I could before turning up the hill towards home. I chewed through 50% of my battery on that hill alone, a frighteningly slow grind up a sharp, unforgiving angle. When I got home, I felt a sense of relief, and of accomplishment. While the world is slowly closing in on me, I don't have to live like it. While my explorations and travels are not far away, my mind and my will can still take me to places I have not seen before.
I am slowly becoming trapped by this world of ALS, living with a monster which works continually to restrict my life. At the same time my mind and my will continue to be alive and free. It's hard and it hurts, not to be able to travel as I once did. I am compelled by circumstance. So I do what I can, take what I can, and live what I can. But I would really like to go to Ireland.
Wednesday, 1 June 2016
Day Five Without Katherine
Katherine has been gone only five days, yet I am already more than convinced that without her, I would have given up long ago. It's not just that I miss her, although it is true; I am a relationship guy and do better with someone in my life. It's not what she does for me, and it's a lot. It's the way she treats me, the way she talks to me. It's how she upholds my life.
I have yet to hear Katherine complain about who I am. Certainly she will let me know when she feels I am being lazy or unreasonable or difficult. What she doesn't do is say things like "If only you were..." or "If only you could...". Katherine takes me the way I am, good and bad, and seems very much to love me, failings and all.
She is tremendously kind to me. When I fall, she helps me up. When I cry, she comforts me. When I laugh, she laughs with me. It reminds me of a quote from Thomas à Kempis, a Dutch theologian born in the 14th century. "Love feels no burden, thinks nothing of trouble, attempts what is above its strength, pleads no excuse of impossibility; for it thinks all things are lawful for itself, and all things possible." This is why I miss Katherine so much, after only five days.
I can get by. I will plod along through this valley of darkness until the light shines on her return to me. I'm lonely, sad when she is not around. But then I take a moment and think of her, of her words to me, of her prance as she revels in an accomplishment, of her stamp when she is angry, and it gets better. I remind myself that there are only 21 days left until she returns to me, and at least one of those three weeks I will be busy with my Mom and Ray, with my children and grandchildren in BC.
The time will not go quickly or slowly. It will simply pass, resolutely, each hour the same duration as the one before and the one to come. Each day I will count one more. Then, all in a rush, she will return from her global adventures, filled with stories, loaded with gifts, excited to share it all. That too, is why I miss her.
I have yet to hear Katherine complain about who I am. Certainly she will let me know when she feels I am being lazy or unreasonable or difficult. What she doesn't do is say things like "If only you were..." or "If only you could...". Katherine takes me the way I am, good and bad, and seems very much to love me, failings and all.
She is tremendously kind to me. When I fall, she helps me up. When I cry, she comforts me. When I laugh, she laughs with me. It reminds me of a quote from Thomas à Kempis, a Dutch theologian born in the 14th century. "Love feels no burden, thinks nothing of trouble, attempts what is above its strength, pleads no excuse of impossibility; for it thinks all things are lawful for itself, and all things possible." This is why I miss Katherine so much, after only five days.
I can get by. I will plod along through this valley of darkness until the light shines on her return to me. I'm lonely, sad when she is not around. But then I take a moment and think of her, of her words to me, of her prance as she revels in an accomplishment, of her stamp when she is angry, and it gets better. I remind myself that there are only 21 days left until she returns to me, and at least one of those three weeks I will be busy with my Mom and Ray, with my children and grandchildren in BC.
The time will not go quickly or slowly. It will simply pass, resolutely, each hour the same duration as the one before and the one to come. Each day I will count one more. Then, all in a rush, she will return from her global adventures, filled with stories, loaded with gifts, excited to share it all. That too, is why I miss her.
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