I'm headed to Edmonton today, up Alberta's Highway 2 from Calgary, headed north, almost a beeline slicing the province in half. The drive will see Calgary quickly disappear behind us as we head up into the rolling prairie land that creeps its way eastward from the foothills of the Rocky Mountains. Far in the westward distance, the staggered peaks of the cordillera will slowly fall downward, behind the horizon, making their way westward as we make our way north.
Canada is a land of incredible beauty. I've seen almost all parts of it, except for the extreme north. There are only about 17 miles of paved road in Nunavit, most of it in a couple of key population centers. There are no roads to the true north; it is a land only accessible by air. Nunavut is bush pilot country. Where we have roads in Canada, I've pretty much been there.
What I find even more beautiful than the land is the people. The way we are seen in global eyes is pretty close to the truth. Canadians, by and large, are a kind, helpful, generous people who always have a ready apology and even more ready laugh. My inability has seen me receive incredible help and support right from Tofino to Petty Harbour. All along that way, I have found the best of people, and the odd dud.
For those Canadians who seem to lose that core Canadian value of acceptance and toleration, I blame it on circumstance and the rush of city life. That's one of the reasons I like to get on the road. In Canada, the roads are connectors from city to city. When you are on the road, you are almost never in any sort of urban setting. Canada is vast, and vastly rural. It is a country of countryside, a land of mostly empty land. Yet most Canadians now live in large urban centres.
In a way it concerns me. I wonder if the core values that make us Canadian will change as we drift farther and farther away from our roots in the wilderness that makes up most of our home. I hope not. I remind myself on a regular basis that this is a country where deer, moose, bear, whatever, wander into major centres on a regular basis. It is that juxtaposition which perhaps best describes Canada, where a deer in the city is headline news, not because we haven't seen it before, but because we love to see it again and again.
Friday, 31 July 2015
Thursday, 30 July 2015
Somehow I Am Still Paying My Ex-Wife
All social programs share one inherent flaw; they all make the assumption that what happened in the past is what will happen in the future. Canada Pension Plan is no different in this regard, especially in one respect. When you get divorced in Canada, your CPP is "equalized" for the time of the marriage. This means CPP contributions from the higher earning spouse are transferred to the lower earning spouse in order to ensure they have equal pensions at time of retirement, theoretically at age 65,
My situation, as with most other things in my life these days, does not fit any sort of typical model. My wife filed for divorce while I was working. Somehow she realized that filing while I was making money would ensure her a substantially higher expectation in terms of spousal support and assets from the divorce court. Even when I was no longer able to work, the judge essentially said "Too bad, so sad. Pay her." When we finally settled, I did not do well. It's just the way the system works. On the other hand I suspect she feels she did not do well either, so there you go.
The real wrinkle is in the CPP benefit. I am on CPP Disability. This is technically a CPP benefit. Under Canadian law, this means my ex-wife is entitled to an equalization payment from my disability pension, even though she is not yet retired. However the payment is not automatic. In fact she has to apply for that equalization payment. She has to know it is there and ask for it.
While this seems fair on the face of it, it hides a blatant unfairness. My ex-wife continues to work. Not only that she earns income from her side business, along with rental income from renting out the basement of her home. She does not plan on retiring until at least age 65. So now she is the higher income spouse, even though I was in that position during the marriage.
So my ex-wife, knowing full well that I am living on my disability pension, knowing full well that I am unable to work and earn money, knowing full well that I am dire financial straits, goes ahead and makes application for a credit slip against my disability pension.
CPP is required by law to pay her out of my pension. Therefore my $1,202 monthly pension now becomes $1,045. My income goes down by 15%. In the mean time she has her own income, something in the range of $30,000 a year, along with her supplemental income from her home based business, plus the rental income from the basement suite. Oh, and she gets that massive $160 from my disability pension.
The greater irony is that I will never collect in return. It is extremely unlikely that I will live as long as her chosen retirement date. In fact I likely won't see anything near 65. So she will collect from me while I am living, and she will collect from me after I am dead. Her actions are quite legal. They are also greedy and immoral.
My situation, as with most other things in my life these days, does not fit any sort of typical model. My wife filed for divorce while I was working. Somehow she realized that filing while I was making money would ensure her a substantially higher expectation in terms of spousal support and assets from the divorce court. Even when I was no longer able to work, the judge essentially said "Too bad, so sad. Pay her." When we finally settled, I did not do well. It's just the way the system works. On the other hand I suspect she feels she did not do well either, so there you go.
The real wrinkle is in the CPP benefit. I am on CPP Disability. This is technically a CPP benefit. Under Canadian law, this means my ex-wife is entitled to an equalization payment from my disability pension, even though she is not yet retired. However the payment is not automatic. In fact she has to apply for that equalization payment. She has to know it is there and ask for it.
While this seems fair on the face of it, it hides a blatant unfairness. My ex-wife continues to work. Not only that she earns income from her side business, along with rental income from renting out the basement of her home. She does not plan on retiring until at least age 65. So now she is the higher income spouse, even though I was in that position during the marriage.
So my ex-wife, knowing full well that I am living on my disability pension, knowing full well that I am unable to work and earn money, knowing full well that I am dire financial straits, goes ahead and makes application for a credit slip against my disability pension.
CPP is required by law to pay her out of my pension. Therefore my $1,202 monthly pension now becomes $1,045. My income goes down by 15%. In the mean time she has her own income, something in the range of $30,000 a year, along with her supplemental income from her home based business, plus the rental income from the basement suite. Oh, and she gets that massive $160 from my disability pension.
The greater irony is that I will never collect in return. It is extremely unlikely that I will live as long as her chosen retirement date. In fact I likely won't see anything near 65. So she will collect from me while I am living, and she will collect from me after I am dead. Her actions are quite legal. They are also greedy and immoral.
Wednesday, 29 July 2015
A Thank You To Steve
Last night one of my friends asked my why I had to write so much negative stuff in my blog. He said "Why can't you write more positive stuff? You have all kinds of good things in your life." He's right, I have plenty of good things in my life, although today is not a great day to talk about them. It seems every time I get on solid ground, something else happens to destabilize my life, something else happens to make it harder.
On the other hand, perhaps a day like today is just the right time to remind myself that, in spite of all the crap that comes with my life these days, there are good things happening to me all the time. On any given day, I get tremendous emotional, physical and even financial support from all kinds of people. I have wonderful friends who are sharing this walk with me, a terrific woman in my life who cares for me beyond belief, a social support system that provides me with first class medical care. I have so many things to be thankful for.
So why don't I express that thanks more often? Why don't I acknowledge all the good in my life more often? I think it is because the hard bits, the failings and frustrations, the losses, all combine on a constant basis to batter at me like waves pounding on to a relentless and rocky coastline. I get so overwhelmed by all this crap that I forget. I lack the strength to push it all aside. I just get tired of it.
Today I am resolved to appreciate the good things in my life, starting with Katherine. This woman has come into my life in the last six months and truly made it worth living. I have a woman who cares for me immensely, who loves me. without judgement or condition. I've never had that before. It's so unusual to me that I just don't understand it. It's amazing.
I want to appreciate those people who have supported me both physically and financially. They know who they are, and they are incredibly generous to me. It is another thing in my life which amazes me, that they are not only so supportive, but that they are also so forgiving of my failings. With them, I do not feel judged. I mess up, they tell me, I fess up, and I fix up. This is because of them, not me. I am honoured and blessed by them.
There is so much else to be thankful for, even in the face of tremendous adversity. It's how I keep smiling, in the face of the darkness. I am grateful. Thanks for reminding me of it, Steve.
On the other hand, perhaps a day like today is just the right time to remind myself that, in spite of all the crap that comes with my life these days, there are good things happening to me all the time. On any given day, I get tremendous emotional, physical and even financial support from all kinds of people. I have wonderful friends who are sharing this walk with me, a terrific woman in my life who cares for me beyond belief, a social support system that provides me with first class medical care. I have so many things to be thankful for.
So why don't I express that thanks more often? Why don't I acknowledge all the good in my life more often? I think it is because the hard bits, the failings and frustrations, the losses, all combine on a constant basis to batter at me like waves pounding on to a relentless and rocky coastline. I get so overwhelmed by all this crap that I forget. I lack the strength to push it all aside. I just get tired of it.
Today I am resolved to appreciate the good things in my life, starting with Katherine. This woman has come into my life in the last six months and truly made it worth living. I have a woman who cares for me immensely, who loves me. without judgement or condition. I've never had that before. It's so unusual to me that I just don't understand it. It's amazing.
I want to appreciate those people who have supported me both physically and financially. They know who they are, and they are incredibly generous to me. It is another thing in my life which amazes me, that they are not only so supportive, but that they are also so forgiving of my failings. With them, I do not feel judged. I mess up, they tell me, I fess up, and I fix up. This is because of them, not me. I am honoured and blessed by them.
There is so much else to be thankful for, even in the face of tremendous adversity. It's how I keep smiling, in the face of the darkness. I am grateful. Thanks for reminding me of it, Steve.
Tuesday, 28 July 2015
Failed Transfers
There are five critical transfers that I make from my wheelchair on a daily or consistent basis: to and from my bed, on and off the toilet, in and out of my truck, in and out of my power wheelchair, on and off my couch. In the last week or so, I have failed in three of them; in and out of bed, in and out of my PWC, and on and off my couch. By failed, I mean I have been unable to make the transfer, either in whole or in part.
The most significant of these failed transfers is the one in and out of bed. In one case, I tried to get into bed and made it half way; Katherine had to rescue me. In another case I was getting out of bed and once again made it only half way. David was here; he and Katherine had to rescue me. Then there are the several instances where I simply am unable to get the transfer going, no matter what I do. I rock back and forth to get starting momentum; I use the wheel of my wheelchair as a halfway launch point; I try alternative methods. None of this works. I simply cannot get myself out of my wheelchair into my bed. I end up using the sling.
The transfer to the PWC was both failed and dangerous, with my daughter Kate having to spring into action, making sure I didn't end up in a lump on the floor. The transfer off the couch resulted in my slipping as I made the adjustment to my wheelchair. Fortunately I was well in the chair and simply fell sideways, the arm of the chair stopping me from going over completely. Katherine was there too, helping me recover from my loss of balance.
So far I am not having trouble with the truck or the toilet. The truck lift system is well designed for the transfer, the gap being small enough that I can still easily make it. The toilet transfer is still fairly simple as well, although I am sensing increasing difficulty with it. That whole bathroom thing, with the shower transfer too, is becoming more problematic. It's going to fail completely one day, at which point I will need the dreaded commode chair.
My arms are failing me. This is what it looks like. It's not fast. It's not easy. Nothing is fast or easy with ALS. Nor is it pretty. In fact it is downright ugly. I am losing my arms. Thankfully I have the sling in my bedroom, the lift in my truck. the commode chair, and most importantly, people in my life who will help me. It's they who make this whole thing bearable.
The most significant of these failed transfers is the one in and out of bed. In one case, I tried to get into bed and made it half way; Katherine had to rescue me. In another case I was getting out of bed and once again made it only half way. David was here; he and Katherine had to rescue me. Then there are the several instances where I simply am unable to get the transfer going, no matter what I do. I rock back and forth to get starting momentum; I use the wheel of my wheelchair as a halfway launch point; I try alternative methods. None of this works. I simply cannot get myself out of my wheelchair into my bed. I end up using the sling.
The transfer to the PWC was both failed and dangerous, with my daughter Kate having to spring into action, making sure I didn't end up in a lump on the floor. The transfer off the couch resulted in my slipping as I made the adjustment to my wheelchair. Fortunately I was well in the chair and simply fell sideways, the arm of the chair stopping me from going over completely. Katherine was there too, helping me recover from my loss of balance.
So far I am not having trouble with the truck or the toilet. The truck lift system is well designed for the transfer, the gap being small enough that I can still easily make it. The toilet transfer is still fairly simple as well, although I am sensing increasing difficulty with it. That whole bathroom thing, with the shower transfer too, is becoming more problematic. It's going to fail completely one day, at which point I will need the dreaded commode chair.
My arms are failing me. This is what it looks like. It's not fast. It's not easy. Nothing is fast or easy with ALS. Nor is it pretty. In fact it is downright ugly. I am losing my arms. Thankfully I have the sling in my bedroom, the lift in my truck. the commode chair, and most importantly, people in my life who will help me. It's they who make this whole thing bearable.
Monday, 27 July 2015
Nice, Good, And Important
Yesterday my daughter, Kate, said something to me which was, all at the same time, nice, good, and important. She said, "Dad, I didn't agree with how you did so much travel and stuff when you first got sick. But now that I see how things are going for you, I think it was a really good idea and I am glad you did it." I know that some around me have wondered about my approach to managing my life what limited finances I have. Some have said I should have been more frugal, saving for this part of my life. Some have said I shouldn't be asking others to pay for my lifestyle. On the other hand, a great many more have been supportive, helpful, and generous, ensuring that I can live a full and vibrant life for as long as possible.
It is important to understand that Kate is a very frugal young lady. This frugality is counterbalanced by a tremendous generosity to her family, to various charities, and to a number of churches and church programs. In other words, Kate puts her money where her mouth is. Instead of spending it on herself, she uses it so support others. This all starts will a very careful approach to her spending as well as lifestyle choices which she believes in.
The reason Kate's comment was so nice was that it recognized that her own bias and approach, which had informed and then formed her opinion, may not have been right in my situation. It's nice because she admitted the case, and recognized that my situation made most logic go right out the window. It's nice because it offered validation and approval, something we all need.
Her comment is good simply because it reminded me once again of the advice my neurologist offered me when I was diagnosed; "If you want to do anything with your life, do it sooner rather than later". That advice has coloured every decision I have made since November 22, 2012. I am constantly asking myself if what I am doing will help my life today, reminding myself that delaying or deferring is probably not the best strategy for me.
It is an important comment, not for me but for all friends of People with ALS and those who are Caregivers for ALS, reminding us that this disease turns logic on its head. What you think and how you might approach something bears little resemblance to how someone with ALS will approach it. Money, time, ability; these things all shift and change the instant you hear your diagnosis.
I am convinced that a large part of the reason I am doing so well with this horrible disease is because of the generosity and kindness of my support network. So many of them have supported, and continue to support, my life and lifestyle. I need to live while I can; that ability is slowly being taken away. I need to do what I can, as well as I can, for as long as I can. One day I won't be able to.
Sunday, 26 July 2015
I Have A Plan
I'm planning another road trip. Wait! Note that I did not say I am going on another road trip. All I said was that I am planning one. I like that process, the process of figuring out the route, determining the best places to stay, deciding how to get somewhere that I been before by going on a road untraveled. I enjoy looking for the hotels, finding the sights along the way, learning something new about where I am going.
If I could, I would spend the rest of my life traveling, mostly by road, with intermittent stays at home, perhaps a split of 50/50. Being home is precious, no doubt. Being away is work, no doubt. Both bring different things to me, often at the same time. In the same breath I can say I love being at home at the same time as I say I want to plan another road trip.
The plan I was working on yesterday is a 21 day tour from Calgary to Quebec City, right in the middle of the leaves changing colour, from late September to mid-October. This time, instead of going the tried and true route along the Trans-Canada, I would sneak north to Saskatoon, then over the top of Manitoba to Flin Flon. The next adventure would be down Lake Winnipeg and then down south of Winnipeg, through the US, to Fort Francis. After that, various routes to Toronto, Montreal, Quebec City, Val d'Or, and finally the northern Ontario route back to Thunder Bay.
I love this country, love to wander its roads, rivers, and oceans. This is the most beautiful land I have ever seen, a land of inspiring mountains, reflection pool lakes, storm tossed coast lines, and vast open-skied prairies. I have seen the power and majesty of this land, of the creatures that inhabit all its corners. I have seen the small animals that cover almost every inch of Canada, from the northernmost mink and fox to the southernmost rabbit and marmot. There is no land quite so rich as ours.
This road trip is only a dream. I simply cannot afford it. The plan I have been making has a budget of $7,000 so far, with a 21 day duration. That's an average of $335 a day. Like I said, it's out of my reach. On the other hand, I get to dream that it might happen, that I might win the lottery, or some magazine might pay at least some of the cost to have me write about this adventure. Who know? If I get the call, at least I have a plan ready.
If I could, I would spend the rest of my life traveling, mostly by road, with intermittent stays at home, perhaps a split of 50/50. Being home is precious, no doubt. Being away is work, no doubt. Both bring different things to me, often at the same time. In the same breath I can say I love being at home at the same time as I say I want to plan another road trip.
The plan I was working on yesterday is a 21 day tour from Calgary to Quebec City, right in the middle of the leaves changing colour, from late September to mid-October. This time, instead of going the tried and true route along the Trans-Canada, I would sneak north to Saskatoon, then over the top of Manitoba to Flin Flon. The next adventure would be down Lake Winnipeg and then down south of Winnipeg, through the US, to Fort Francis. After that, various routes to Toronto, Montreal, Quebec City, Val d'Or, and finally the northern Ontario route back to Thunder Bay.
I love this country, love to wander its roads, rivers, and oceans. This is the most beautiful land I have ever seen, a land of inspiring mountains, reflection pool lakes, storm tossed coast lines, and vast open-skied prairies. I have seen the power and majesty of this land, of the creatures that inhabit all its corners. I have seen the small animals that cover almost every inch of Canada, from the northernmost mink and fox to the southernmost rabbit and marmot. There is no land quite so rich as ours.
This road trip is only a dream. I simply cannot afford it. The plan I have been making has a budget of $7,000 so far, with a 21 day duration. That's an average of $335 a day. Like I said, it's out of my reach. On the other hand, I get to dream that it might happen, that I might win the lottery, or some magazine might pay at least some of the cost to have me write about this adventure. Who know? If I get the call, at least I have a plan ready.
Saturday, 25 July 2015
Toilet Costs
My toilet doesn't like to flush; it's a slow flusher. It wasn't always this way. When we put the toilet in, during the renovations a year and a half ago, it flushed just fine. Then something happened, I don't know what, and now it is what I would call "persnickety". Sometimes it will flush. Sometimes it flushes slowly. Sometimes you need to flush it two or three times to get it to clear. Sometimes it will not flush at all.
I called a plumber last Christmas during a particularly bad phase. The fellow came and ran a toilet auger through the toilet. It did nothing but cost me $280. The fellow, whom I refuse to refer to as a plumber, said he could lift the toilet and inspect the drain at a cost of $500. He also said for another $200 he could replace the toilet, which might be the best idea. Unfortunately he didn't have the right kind of toilet with him. After consideration, I thought better of the whole thing, deciding to try again with a proper drain snake.
Getting a plumber in Calgary is almost impossible these days. Even with the oil downturn almost every one of them is busy on new house construction or major home renovation. The cost of a plumber is out of this world, with estimates nearing $1,000 to lift the toilet, inspect the drain, and clean out whatever might be in there. I simply cannot afford that kind of money for something which is merely problematic.
One of my friends has offered to bring over a plumbing snake. We will see what we can do with that. If I cannot get it fixed that way, I face the unenviable choice of calling in a plumber for an outrageous sum of money, or simply putting up with a slow flush, using the plunger periodically to encourage the process.
The really frustrating part about all of this is that, once upon a time, I could have done all of this myself. I know how to use a toilet auger and plumber's snake. In fact I used to own these tools. My ex-wife got them when she kept the house and contents. I am not sure what she did with them, nor does it matter. What matters is that I can no longer do this, use these tools, solve this problem. I could once, but no more. It's another cost of ALS.
I called a plumber last Christmas during a particularly bad phase. The fellow came and ran a toilet auger through the toilet. It did nothing but cost me $280. The fellow, whom I refuse to refer to as a plumber, said he could lift the toilet and inspect the drain at a cost of $500. He also said for another $200 he could replace the toilet, which might be the best idea. Unfortunately he didn't have the right kind of toilet with him. After consideration, I thought better of the whole thing, deciding to try again with a proper drain snake.
Getting a plumber in Calgary is almost impossible these days. Even with the oil downturn almost every one of them is busy on new house construction or major home renovation. The cost of a plumber is out of this world, with estimates nearing $1,000 to lift the toilet, inspect the drain, and clean out whatever might be in there. I simply cannot afford that kind of money for something which is merely problematic.
One of my friends has offered to bring over a plumbing snake. We will see what we can do with that. If I cannot get it fixed that way, I face the unenviable choice of calling in a plumber for an outrageous sum of money, or simply putting up with a slow flush, using the plunger periodically to encourage the process.
The really frustrating part about all of this is that, once upon a time, I could have done all of this myself. I know how to use a toilet auger and plumber's snake. In fact I used to own these tools. My ex-wife got them when she kept the house and contents. I am not sure what she did with them, nor does it matter. What matters is that I can no longer do this, use these tools, solve this problem. I could once, but no more. It's another cost of ALS.
Friday, 24 July 2015
Hello, Goodbye
It has been a week of hellos and goodbyes. Over the weekend, I said hello to my brothers, Jim and Peter; to my friends from the coast, Chris, Chris and Dianne; to many other friends whom I have not seen for many months who came to my birthday party. Then first it was Peter to head home, then Jim, then Chris, and this morning, Chris and Dianne. Last night we celebrated with one of our young friends as she prepared to move to Peterborough, Ontario, for a new career opportunity. Just as there were happy hellos, there were sad goodbyes.
Dianne said something important this week. While coming here for my birthday party, she was also coming here to see her aging and fragile parents. After seeing them yesterday, she said "I make sure I say goodbye to them every time I see them. It may be the last time." She went on to explain how she made sure she said she loved them, how important it was for her to be at peace with herself when she left, since she might not see them again.
I thought about this a lot as I said goodbye to Chris and Dianne this morning, unspoken thoughts, realizing that this might as well be said of me, or for that matter, of any of us. None of us knows the number of our days. This might well be the last time I see them, not for any lack of want or effort on either part but as a result of the vagaries of life.
With children spread out away from me, with my Mom and Ray in Vancouver, with my brothers scattered about the continent, with friends dear to me while far from me, I never know, I could never assume that I will see anyone of them again. Each day, each moment, might be the last. I know that one day will be the last day that we meet, I just don't know which one or for whom.
Dianne's approach is the best one, to be at peace when you see someone, when you depart from them or they from you. I want to tell all those whom I love that I love them, that I miss them, that I want them in my life constantly, that I value them, treasure them, hold them dear in my heart. I want to be sure that the next time I say goodbye isn't the last; if it is, I want them to know how important they are do me.
Dianne said something important this week. While coming here for my birthday party, she was also coming here to see her aging and fragile parents. After seeing them yesterday, she said "I make sure I say goodbye to them every time I see them. It may be the last time." She went on to explain how she made sure she said she loved them, how important it was for her to be at peace with herself when she left, since she might not see them again.
I thought about this a lot as I said goodbye to Chris and Dianne this morning, unspoken thoughts, realizing that this might as well be said of me, or for that matter, of any of us. None of us knows the number of our days. This might well be the last time I see them, not for any lack of want or effort on either part but as a result of the vagaries of life.
With children spread out away from me, with my Mom and Ray in Vancouver, with my brothers scattered about the continent, with friends dear to me while far from me, I never know, I could never assume that I will see anyone of them again. Each day, each moment, might be the last. I know that one day will be the last day that we meet, I just don't know which one or for whom.
Dianne's approach is the best one, to be at peace when you see someone, when you depart from them or they from you. I want to tell all those whom I love that I love them, that I miss them, that I want them in my life constantly, that I value them, treasure them, hold them dear in my heart. I want to be sure that the next time I say goodbye isn't the last; if it is, I want them to know how important they are do me.
Thursday, 23 July 2015
Hope Or Hopelessness Matters Little
It's difficult to write today; well, not difficult to write, just painful, sort of. My neck and shoulders are stiff today. My upper right arm hurts, as does the muscle in my neck on the right side. It is getting increasingly difficult to hold up my body when I first sit up in the morning. This morning Katherine tried to help me sit up and I had to ask her to stop because of the pain.
This is not a big pain. On a scale of 1 to 10, it might merit a 2. It's more of a stiffness, a weakness in these muscle areas. That's what ALS does. There is no big presentation of change; you just feel weaker and weaker until one day you realize that something you once could do is now beyond you. The final step in the process is when you can do nothing at all, then you die.
It's not so much a complaint as it is a recognition of my reality. For instance, there will come a time when I cannot sit up at all without support. That will mean changing my wheelchair for one with supportive sides. Perhaps by that time I will have given up on the manual chair and gone completely to the power wheelchair. There will come a time when I need that commode chair which is currently stored in the shower. My upper body muscles will have declined sufficiently that I will no longer be able to sit on the toilet without support.
One of the most terrifying things about this disease is the foreknowledge of what is coming, the ability to at least estimate what will most likely happen and roughly when. The march is not a lockstep one, where each loss triggers the next. There is just enough randomness to give you all kinds of false hope. That's when ALS strikes anew, shattering your dream that something might be different, that there might be a chance.
With ALS, hope is just as bad as hopelessness. Hope is dashed on a consistent basis. Hopelessness is a dark pit with no release. I've given up on hope, yet I refuse to fall into hopelessness. The best I can do is live with acceptance, find as much as I can in each day, and when the times comes, depart this mortal coil with as much dignity as I can muster. I just hope I don't die sitting in the commode chair trying to take a shit; that would be about as undignified as I can get. That would be hopelessness embodied.
This is not a big pain. On a scale of 1 to 10, it might merit a 2. It's more of a stiffness, a weakness in these muscle areas. That's what ALS does. There is no big presentation of change; you just feel weaker and weaker until one day you realize that something you once could do is now beyond you. The final step in the process is when you can do nothing at all, then you die.
It's not so much a complaint as it is a recognition of my reality. For instance, there will come a time when I cannot sit up at all without support. That will mean changing my wheelchair for one with supportive sides. Perhaps by that time I will have given up on the manual chair and gone completely to the power wheelchair. There will come a time when I need that commode chair which is currently stored in the shower. My upper body muscles will have declined sufficiently that I will no longer be able to sit on the toilet without support.
One of the most terrifying things about this disease is the foreknowledge of what is coming, the ability to at least estimate what will most likely happen and roughly when. The march is not a lockstep one, where each loss triggers the next. There is just enough randomness to give you all kinds of false hope. That's when ALS strikes anew, shattering your dream that something might be different, that there might be a chance.
With ALS, hope is just as bad as hopelessness. Hope is dashed on a consistent basis. Hopelessness is a dark pit with no release. I've given up on hope, yet I refuse to fall into hopelessness. The best I can do is live with acceptance, find as much as I can in each day, and when the times comes, depart this mortal coil with as much dignity as I can muster. I just hope I don't die sitting in the commode chair trying to take a shit; that would be about as undignified as I can get. That would be hopelessness embodied.
Wednesday, 22 July 2015
No Treatment, No Cure
My home care worker came today; I have a worker every Monday, Wednesday, and Friday to help me with my shower and exercises. Today, when helping me in the shower, the care worker noticed the commode chair that is stored in there while Chris and Dianne visit and use the guest bedroom, where the chair normally resides.
The care worker is from India, the Punjab to be precise. She speaks in broken English although she has been in Canada for a decade. In that broken English, she said "New chair?" I replied,"It's for what's coming next." She understood immediately. Her face fell and I could see the sadness creep into her eyes. I said "We know what is coming. We might as well prepare for it."
She helped me transfer from the shower bench to the wheelchair, and wheeled me into my bedroom. Along the way she noticed once again all the pills on my dresser and asked "Medication doesn't help?" I said "No. Medicines are for other things. For this, there is no treatment; no cure." I could see the look of confusion on her face, the difficulty in grappling with an illness for which nothing can be done. Her expression gave her away; there were more questions coming so I decided to forestall them right away.
I said to her, "With this disease, you die, slowly. First your legs die. Then your arms die. Then your breath dies. Then you die." She asked "How do you get it?" I replied, "Nobody knows."
While the explanation is simplified, it certainly crossed the language gap. She understood. Yet I could still see the confusion in her mind. I could almost hear her asking why it is, in a first world country, with the finest medical systems on the planet, where we can beat cancer, treat so many, prolong so many lives, that we have an illness where nobody knows its origin, there is no treatment, there is no cure.
It's easy for me to understand; I have ALS. For others, no matter what their language or culture or nation of origin, it's hard to understand. I get tired of explaining it sometimes, especially to people in the health care business. It's just what happens, just another thing I have to get used to, just another thing in my life... explaining in plain English that I am dying, one day at a time.
The care worker is from India, the Punjab to be precise. She speaks in broken English although she has been in Canada for a decade. In that broken English, she said "New chair?" I replied,"It's for what's coming next." She understood immediately. Her face fell and I could see the sadness creep into her eyes. I said "We know what is coming. We might as well prepare for it."
She helped me transfer from the shower bench to the wheelchair, and wheeled me into my bedroom. Along the way she noticed once again all the pills on my dresser and asked "Medication doesn't help?" I said "No. Medicines are for other things. For this, there is no treatment; no cure." I could see the look of confusion on her face, the difficulty in grappling with an illness for which nothing can be done. Her expression gave her away; there were more questions coming so I decided to forestall them right away.
I said to her, "With this disease, you die, slowly. First your legs die. Then your arms die. Then your breath dies. Then you die." She asked "How do you get it?" I replied, "Nobody knows."
While the explanation is simplified, it certainly crossed the language gap. She understood. Yet I could still see the confusion in her mind. I could almost hear her asking why it is, in a first world country, with the finest medical systems on the planet, where we can beat cancer, treat so many, prolong so many lives, that we have an illness where nobody knows its origin, there is no treatment, there is no cure.
It's easy for me to understand; I have ALS. For others, no matter what their language or culture or nation of origin, it's hard to understand. I get tired of explaining it sometimes, especially to people in the health care business. It's just what happens, just another thing I have to get used to, just another thing in my life... explaining in plain English that I am dying, one day at a time.
Tuesday, 21 July 2015
I'm Sixty
Today is my sixtieth birthday; I don't feel any different than I did yesterday, way back when I was in my fifties. I don't feel old, or older at any rate. The arbitrary assignments we make in the calendar of our lives are few, mostly set by key social events. The have no real meaning.
For most of us, 16 is the first big one, when we can get our driver's licence; by this time I had already been driving for a couple of years. Then comes 19 or 21 when you can get into the bar for a beer; I'd already been going for a couple of years with my Dad, driving him home when he had had more than his share. At 18 or 21 you get to vote or join the military. Then there are few days until 65, our enshrined retirement age for this and last century.
Turning sixty offers none of those seminal events. It's just another day, somewhere between 21 and 65. I've seen the 21; the 65 is unlikely. As a couple of people have already noted, for many turning 60 would represent a milestone; for me it represents a real accomplishment. The odds were about 50/50 on my getting this far when I sat in that hospital room on November 22, 2012, listening to a neurologist discuss diagnosis, prognosis, and probability.
At age 57, I was told that the most likely scenario was somewhere in the range of 36 months. That makes it sixty. I was diagnosed 32 months ago, so there is still time for me to live up to my expectation. Only now I want to live beyond it. Now I want to see 61, 62, and beyond. Of course I have always wanted to do that; now it's one marker point closer.
Each day is a gift. Each day gives me the opportunity to live once more, to feel my heart beat, to feel my blood pulse, to have my eyes mist over at the sound of a sad story, to laugh at even a bad joke. It's also another day with ALS. Right now, I can live with that. And remember, there are a lot of people who don't even make it to sixty.
For most of us, 16 is the first big one, when we can get our driver's licence; by this time I had already been driving for a couple of years. Then comes 19 or 21 when you can get into the bar for a beer; I'd already been going for a couple of years with my Dad, driving him home when he had had more than his share. At 18 or 21 you get to vote or join the military. Then there are few days until 65, our enshrined retirement age for this and last century.
Turning sixty offers none of those seminal events. It's just another day, somewhere between 21 and 65. I've seen the 21; the 65 is unlikely. As a couple of people have already noted, for many turning 60 would represent a milestone; for me it represents a real accomplishment. The odds were about 50/50 on my getting this far when I sat in that hospital room on November 22, 2012, listening to a neurologist discuss diagnosis, prognosis, and probability.
At age 57, I was told that the most likely scenario was somewhere in the range of 36 months. That makes it sixty. I was diagnosed 32 months ago, so there is still time for me to live up to my expectation. Only now I want to live beyond it. Now I want to see 61, 62, and beyond. Of course I have always wanted to do that; now it's one marker point closer.
Each day is a gift. Each day gives me the opportunity to live once more, to feel my heart beat, to feel my blood pulse, to have my eyes mist over at the sound of a sad story, to laugh at even a bad joke. It's also another day with ALS. Right now, I can live with that. And remember, there are a lot of people who don't even make it to sixty.
Monday, 20 July 2015
Happy, Sad
My hands are shaking badly today. The Katherine tells me I have been too excited for the last few days, plus I've had too much scotch. She's right about the excitement, possibly even about the scotch. It has been a very exciting few days. This weekend has been the celebration of my sixtieth birthday. My actual birthday is on Tuesday, July 21. There will be a much less effusive celebration on that day.
This weekend started with my brother Peter, along with my friends Chris and Chris, and myself having our own small gathering on Saturday night. It would be fair to say that I over-consumed in the scotch department. I would like to think I had a very good time; the guys tell me I did. Mostly I can't remember anything after about 10:00 PM when Katherine made the wise decision to go home, and Dianne made the wise decision to go to bed.
I woke up on Sunday morning very much worse for the wear, having let the dragon loose on Saturday night. When I get more than a few drinks into me, the emotions that lay buried inside me slip their chains and make their way to the surface. Mostly I keep these strong personal feelings contained; they are mine and mine alone to carry. Yet when alcohol loosens my inhibitions, what is in there comes out.
What is in there is kind of scary, a combination of massive distress over what is happening to my once strong and capable body, true unhappiness about my impending death, and a real and powerful anger about what has happened to my life lately. It's unfair to let that loose. When the sadness comes out, as it did on Saturday, it makes others around me, those who love me, terribly sad too. When the anger comes out, I just turn into a massive asshole. I prefer to keep the anger well hidden; the sadness is not all that deep, staying just below the surface.
I while ago the anger came out in a group of my friends. I didn't even know it was there until it was too late. I've seen it before, a few months back, when I was angry with one of my groups. That anger joined in the party and I was a real jerk for while. I adjusted my medications and the anger came back into control. It's back again, so I think I need to adjust my medications again.
The sadness never goes away. No amount of medication can take it away, unless I become stupified. The sadness will never go away. I will live with it every day for the rest of my life. Even good days are tinged with the colour of distress. That's just the way it is. I just have to deal with it, finding the joy in the moment. And there are a lot of joyful moments. That's why I live for the now, in the light of today. That's where I can be happy.
This weekend started with my brother Peter, along with my friends Chris and Chris, and myself having our own small gathering on Saturday night. It would be fair to say that I over-consumed in the scotch department. I would like to think I had a very good time; the guys tell me I did. Mostly I can't remember anything after about 10:00 PM when Katherine made the wise decision to go home, and Dianne made the wise decision to go to bed.
I woke up on Sunday morning very much worse for the wear, having let the dragon loose on Saturday night. When I get more than a few drinks into me, the emotions that lay buried inside me slip their chains and make their way to the surface. Mostly I keep these strong personal feelings contained; they are mine and mine alone to carry. Yet when alcohol loosens my inhibitions, what is in there comes out.
What is in there is kind of scary, a combination of massive distress over what is happening to my once strong and capable body, true unhappiness about my impending death, and a real and powerful anger about what has happened to my life lately. It's unfair to let that loose. When the sadness comes out, as it did on Saturday, it makes others around me, those who love me, terribly sad too. When the anger comes out, I just turn into a massive asshole. I prefer to keep the anger well hidden; the sadness is not all that deep, staying just below the surface.
I while ago the anger came out in a group of my friends. I didn't even know it was there until it was too late. I've seen it before, a few months back, when I was angry with one of my groups. That anger joined in the party and I was a real jerk for while. I adjusted my medications and the anger came back into control. It's back again, so I think I need to adjust my medications again.
The sadness never goes away. No amount of medication can take it away, unless I become stupified. The sadness will never go away. I will live with it every day for the rest of my life. Even good days are tinged with the colour of distress. That's just the way it is. I just have to deal with it, finding the joy in the moment. And there are a lot of joyful moments. That's why I live for the now, in the light of today. That's where I can be happy.
Sunday, 19 July 2015
ALS and FTD - A Potent Combination
This post is from Darlene Long and was first published in the public Facebook Group, "ALS We are in it together." I am posting it here in its entirety, and without edit. I have both ALS and FTD.
When they're not them ...
It has long been thought that ALS steals bodies, but not minds. Recent research is now showing that maybe, for some, pieces of their minds are stolen too.
This is an awareness post update.
Frontal Temporal Dementia with ALS can strike some patients, sprinkling bits of this disease subtlety that will show up in different ways and with little fanfare. Everyone doesn't necessarily have the same troubles, though, and lack of mobility with ALS may mask what is happening. Caregivers need to be alert to personality and behavior changes.
Struggles with words, decision making, depression, anger and frustration can easily be attributed to having ALS itself. If a person loses their speech or ability to write, any loss of words can't be detected. And who wouldn't face depression upon learning they have a terminal illness that will leave them completely helpless. But those symptoms can also be signs of FTD.
Just when you think nothing worse could happen, FTD rears it's horrendous head, and its tentacles wrap themselves around their minds, causing more heartache.
One woman wrote that her husband spent hours every day communicating on an alphabet card to tell her how terrible she was at caring for him. Their time together was a nightmare. Indifference can come with FTD too. She would cry and tel him she was doing the best she could, that she was exhausted, and so worried because they had no money to get help. Her husband would look at her, expressionless, and then ask her to wipe his eyes. This woman loved her husband, and said he had always been the kindest, most considerate man she had ever known. She didn't recognize this stranger, but took his words to heart and felt he must be right. FTD doesn't allow rom for empathy or even for its victims to realize what they are doing to their caregivers. They are no longer 'them'.
Another man wrote to his children and friends that his wife was giving him too much medicine and trying to kill him. (She wasn't, and fortunately, kept a daily log of treatments and meds given that could be checked.). Paranoia is common with FTD according to the many posts of caregivers seeking advice on help sites. These patients misinterpret what is going on around them, and cannot see the truth and reality. The FTD clouds their reasoning and thought processes. The wife was heartsick as she and her husband had had such a loving relationship and she couldn't imagine this ever happening or him thinking such thoughts. Her husband was no longer 'him'.
Still another man dealt with his wife becoming obsessive compulsive, and was so worn out by her demands. She would get an idea in her head and couldn't let it go. Excessive buying of objects they didn't need, demanding he change her position and then continual repositioning for hours, and making changes around the house and in the yard took its toll until he felt he couldn't care for her at home anymore. His wife had never been like that. He said she had always been the sweetest woman who never asked for anything. She was no longer 'her'.
Caregivers of patients with ALS with FTD are prone to deeper depression and face a much larger burden of care for their loved ones. They often don't share what is happening either, because they feel both guilty that maybe they are not up to the job and/or they don't want others to judge their spouses/children for this new behavior.
ALS steals so much. We need to continually consider this thief, and keep what we can from its stealthy fingers. We all can recognize that these new behaviors 'are not who they are'. We need to see them for who they always were. We need to talk with their doctors and nurses to get them help with the new behavior and emotional changes if possible. We need to help them understand, as best as we can, what is happening, and reassure them of our love and support.
Okay, big disclaimer ... Everyone will NOT deal with FTD. Some may have only occasional symptoms. But it is important for all caregivers to be aware that changes may come and if they do, get help as soon as possible.
As many are gearing up for the next round of the IceBucketChallenge in August (and every August until there is a cure), please consider giving a gift of Hope, (every penny counts). Let's put this thief in lock up forever and release all these innocent victims from their life sentence of ALS.
Saturday, 18 July 2015
Dual Thoughts
My arms are shaking and weak today. I can barely hold onto a piece of cheese. My coffee sits beside me, waiting for me to spill it. I just took a big bite out of the left side of my inner lip. I really don't want to write about this disease, but it steals so much of my attention lately. It's like the only actor on my life's stage.
Other actors will enter my life's stage today. Company is coming! My brothers, Peter and Jim are coming to celebrate my 60th birthday with me tomorrow, as are my friends Chris, Chris and Dianne. Many others will be with me tomorrow as I celebrate at the Cat N' Fiddle Pub here in Calgary. It will be a fun evening, both tonight and tomorrow night.
I just took a sip of coffee. The cup shook a fair bit on the trip from the table to my lip. There was no spillage. I'm thinking of having another piece of prosciutto and Swiss cheese, but my lip still hurts from the last attempt, a piece of which still sits in front of me. It doesn't matter; I'm not really that hungry.
I come alive with other people. Having anyone around me seems to make life better. I simply am not a solo act; I am an extrovert of the highest order. Other people give to me through their energy and laughter. That's what brings this stage of my life alive, what gives is meaning, that I should interact and be involved with those who love me and those whom I love.
I wish the spasms would stop in my upper arms. It makes them even weaker. It hurts right now as I type. My fingers are shaking and my hands are tired, even after a few paragraphs. I just had a second sip of coffee. At least I didn't choke on it. I choke on something almost every time I eat. Nothing big, often something as small as a bit of pepper or a sip of water. I'm doing good so far this morning.
While days often start with difficulty and challenge, as soon as I get out into the world, as soon as I get involved with other people, my days get better. I am usually strongest in the afternoon, most likely because I have had time to populate my world with interaction. Today will be like that, a play in the mode of my life, some action, some thought, some words.
Other actors will enter my life's stage today. Company is coming! My brothers, Peter and Jim are coming to celebrate my 60th birthday with me tomorrow, as are my friends Chris, Chris and Dianne. Many others will be with me tomorrow as I celebrate at the Cat N' Fiddle Pub here in Calgary. It will be a fun evening, both tonight and tomorrow night.
I just took a sip of coffee. The cup shook a fair bit on the trip from the table to my lip. There was no spillage. I'm thinking of having another piece of prosciutto and Swiss cheese, but my lip still hurts from the last attempt, a piece of which still sits in front of me. It doesn't matter; I'm not really that hungry.
I come alive with other people. Having anyone around me seems to make life better. I simply am not a solo act; I am an extrovert of the highest order. Other people give to me through their energy and laughter. That's what brings this stage of my life alive, what gives is meaning, that I should interact and be involved with those who love me and those whom I love.
I wish the spasms would stop in my upper arms. It makes them even weaker. It hurts right now as I type. My fingers are shaking and my hands are tired, even after a few paragraphs. I just had a second sip of coffee. At least I didn't choke on it. I choke on something almost every time I eat. Nothing big, often something as small as a bit of pepper or a sip of water. I'm doing good so far this morning.
While days often start with difficulty and challenge, as soon as I get out into the world, as soon as I get involved with other people, my days get better. I am usually strongest in the afternoon, most likely because I have had time to populate my world with interaction. Today will be like that, a play in the mode of my life, some action, some thought, some words.
Friday, 17 July 2015
Dark Thoughts
Coming home was supposed to be a joyful event. Coming home was supposed to make things all better. I was supposed to be happy when I came home. I am happy about being home, about getting back into my apartment. I am happy to be with my friends. But coming home has reminded me of another very dark side to my life, that I am not only living with ALS, but dying because of it.
While I am on the road, there is distraction, an excuse not to look at the normal functions of my life. I can pretend that life is temporary, that my disease doesn't really matter all that much. When I am driving, especially a long distance, I feel free, almost like a normal person. When I am home, that feeling goes away. I am living my life again, a life filled with ALS.
It's a pretty dark place most of the time. When I start each day, I wonder why I bother. By the end of each day I find myself staring at the pills on my dresser, wondering if I should just take them all tonight and be done with it. This long, slow, torturous process is killing me, literally. It's also killing my spirit along the way. I don't really want to go through this; I just don't have a lot of choice. To be honest, most times I really wish I was dead. Most times, I am faking it just to get through another day.
My birthday party is on Sunday. One of my friends said to me last night, "Don't die before Sunday. I would miss you at your party." I thought to myself, just for a flashing moment, "Does he know something about what I am feeling?" I really am so done with this. It's hard, it hurts, and it's taking too long. I will be glad when it's over.
While I am on the road, there is distraction, an excuse not to look at the normal functions of my life. I can pretend that life is temporary, that my disease doesn't really matter all that much. When I am driving, especially a long distance, I feel free, almost like a normal person. When I am home, that feeling goes away. I am living my life again, a life filled with ALS.
It's a pretty dark place most of the time. When I start each day, I wonder why I bother. By the end of each day I find myself staring at the pills on my dresser, wondering if I should just take them all tonight and be done with it. This long, slow, torturous process is killing me, literally. It's also killing my spirit along the way. I don't really want to go through this; I just don't have a lot of choice. To be honest, most times I really wish I was dead. Most times, I am faking it just to get through another day.
My birthday party is on Sunday. One of my friends said to me last night, "Don't die before Sunday. I would miss you at your party." I thought to myself, just for a flashing moment, "Does he know something about what I am feeling?" I really am so done with this. It's hard, it hurts, and it's taking too long. I will be glad when it's over.
Thursday, 16 July 2015
Home Alone 2
Home alone. In my case it's not a comedy. It's a relearning of my life. I have to figure out my routines, get my days in order, understand once again how to go onward with my not nearly normal life. If you asked me what kind of move my life would be, it would be one of those horror movies, where the villain, played happily by ALS, kills everyone slowly and, in the end, wins. Or it would be a tragedy, where the hero, played unhappily by myself, loses everything and then dies.
I came home yesterday, to my empty apartment, having dropped Katherine off first at her place. My apartment was hot, a common event in the summers, and even winters, here in Alberta. It's position in the building and exposure to the sun means it is almost always hot, even on the coolest of days. I turned the heat off when I moved in and I have never turned it on again, even in the dead cold of a nasty Calgary winter. Having had the windows closed for weeks on end, stifling is the best word to describe what I walked into.
Kate came to visit. We spent a wonderful evening together. I had the fans running and the windows open, so things began to cool down. We talked about the trip, about family, about her life. We talked about my situation, what I was going to do or not do, what my plans were about money for things like TV, the Internet, electricity, oh, and of course, food.
Then we went shopping. The trip to the mall was uneventful; we even used the repaired elevator. To look at it, you would think nothing had changed except the button panel. You would be wrong; lots has change but you can't see it.
The same is true with me; lots has changed but you can't see it, at least not right away. It became evident, however, when I tried to transfer from my manual wheelchair to my power wheelchair, to go shopping. It was then that I discovered that I can no longer make that transfer as I used to. I am no longer strong enough to lift myself up to the seat of the PWC. We used the transfer board, and that almost turned to disaster as I began to slide down the board instead of up. It would appear I lack the strength to do that too. Kate caught me and helped, so I made it eventually.
Transfers. That, along with several other home tasks, is something I am going to have to relearn, now that I am Home Alone.
I came home yesterday, to my empty apartment, having dropped Katherine off first at her place. My apartment was hot, a common event in the summers, and even winters, here in Alberta. It's position in the building and exposure to the sun means it is almost always hot, even on the coolest of days. I turned the heat off when I moved in and I have never turned it on again, even in the dead cold of a nasty Calgary winter. Having had the windows closed for weeks on end, stifling is the best word to describe what I walked into.
Kate came to visit. We spent a wonderful evening together. I had the fans running and the windows open, so things began to cool down. We talked about the trip, about family, about her life. We talked about my situation, what I was going to do or not do, what my plans were about money for things like TV, the Internet, electricity, oh, and of course, food.
Then we went shopping. The trip to the mall was uneventful; we even used the repaired elevator. To look at it, you would think nothing had changed except the button panel. You would be wrong; lots has change but you can't see it.
The same is true with me; lots has changed but you can't see it, at least not right away. It became evident, however, when I tried to transfer from my manual wheelchair to my power wheelchair, to go shopping. It was then that I discovered that I can no longer make that transfer as I used to. I am no longer strong enough to lift myself up to the seat of the PWC. We used the transfer board, and that almost turned to disaster as I began to slide down the board instead of up. It would appear I lack the strength to do that too. Kate caught me and helped, so I made it eventually.
Transfers. That, along with several other home tasks, is something I am going to have to relearn, now that I am Home Alone.
Wednesday, 15 July 2015
It's Time To Go Home
The Great Elevator Escape is about to end. I am headed home today, back to my apartment, back to a working elevator, back to a normal life where I sleep in the same bed every night, where I cook my own meals, where I grab a glass and a bottle of my own wine, where I shower in a bathroom well designed for someone in a wheelchair.
At least, that is the plan for today. There is always this niggling little voice in the back of my mind warning me to be prepared for disappointment, for a let down. So much of my life in the last few years has been filled with that kind of let down; I should used to it by now. I spend most of my time wondering when the next bad thing will happen; not if it will happen or what it is, but when it will happen. It's always something.
It is prosaic that the last night of the Great Elevator Escape was spent here in McBride, BC. Today we head from here to home, from a town which bears my name to a home which bears my life. Once I am there, once I am truly in my own space, life begins again, starting with a visit from Katie, who will, no doubt, share all the news from the family back in BC. Tomorrow night is Music Trivia. Friday night will be spent with Chris and Dianne. Saturday night is a small gathering at my apartment. Sunday night is my 60th birthday party at The Cat N' Fiddle Pub.
You might look at that schedule and wonder where Katherine fits in. She is in there, no worries. However I know she is rather tired of all of this and simply wants to spend some time in her own home, just as I do. She's spent an awful lot of time with me over the last few months, she's tired of it all; now it's time for her.
Today I drive through the rain, through the mountains, through the forest fire smoke. Today I spend hours behind the wheel focused on but one objective. It's time to go home.
At least, that is the plan for today. There is always this niggling little voice in the back of my mind warning me to be prepared for disappointment, for a let down. So much of my life in the last few years has been filled with that kind of let down; I should used to it by now. I spend most of my time wondering when the next bad thing will happen; not if it will happen or what it is, but when it will happen. It's always something.
It is prosaic that the last night of the Great Elevator Escape was spent here in McBride, BC. Today we head from here to home, from a town which bears my name to a home which bears my life. Once I am there, once I am truly in my own space, life begins again, starting with a visit from Katie, who will, no doubt, share all the news from the family back in BC. Tomorrow night is Music Trivia. Friday night will be spent with Chris and Dianne. Saturday night is a small gathering at my apartment. Sunday night is my 60th birthday party at The Cat N' Fiddle Pub.
You might look at that schedule and wonder where Katherine fits in. She is in there, no worries. However I know she is rather tired of all of this and simply wants to spend some time in her own home, just as I do. She's spent an awful lot of time with me over the last few months, she's tired of it all; now it's time for her.
Today I drive through the rain, through the mountains, through the forest fire smoke. Today I spend hours behind the wheel focused on but one objective. It's time to go home.
Tuesday, 14 July 2015
A Chain LInk Fence
I'm sitting here looking out at the wind whipped green veil of birch and cottonwood trees, our hotel separated from the forest by only a thin line of cleared ground and a chain link fence. I wonder if the fence is to keep us in, or to keep them out, whoever "them" is. Certainly the forests hold a host of wildlife. Certainly the fence keeps the verdant covering of the forest floor from creeping ever closer to the hotel. Yet that fence is as powerful a statement of our separation from the land as I can think of. Keep the people in; keep the forest out.
There were people in this land before we came here, people who themselves were wanderers, seeking new lands, new places to make a home. We are all wanderers, our species having started in the savannas of Africa then making its way round the world, wandering, crawling over the planet like weeds in an unkempt summer lawn. We, like those weeds, seem to sprout up and grow everywhere, despite a harsh world around us. Yet here we are today, needing protection from that world, in a hotel separated from it by a chain link fence.
I wonder how many people know the recency of the first peoples in this place? The native peoples who call themselves First Nations may have been the first to arrive. They may not. Perhaps there were other forms of humanity here before them. We don't really know. For example, we know that the Innu of the north are not the first people; before them there were the Thule. Less than a thousand years ago, the Innu displaced the Thule with better tools, better technology, better methods of war.
This planet is old, life on it long and varied. We wander in the forests and think of virgin trees, old growth. Yet these trees were once not here, having grown up in only the last thousand years. Before them there were other older trees, struck down by fire or disease, or other men. Old does not mean original. It just means we don't know what came before, and we are not patient enough to wait for what will come next.
That's why we need the chain link fence, to protect us from what we don't know, to protect us from what might come next. Just as my life is short, all our lives are short. We are all looking through that fence, through the gaps in the chain, into the unknown forest beyond. I have taken down my fence. I have decided to embrace that unknown, to wander once again, into the places where others may, or may not, have gone before, where something new awaits me. That is my version of humanity in action.
There were people in this land before we came here, people who themselves were wanderers, seeking new lands, new places to make a home. We are all wanderers, our species having started in the savannas of Africa then making its way round the world, wandering, crawling over the planet like weeds in an unkempt summer lawn. We, like those weeds, seem to sprout up and grow everywhere, despite a harsh world around us. Yet here we are today, needing protection from that world, in a hotel separated from it by a chain link fence.
I wonder how many people know the recency of the first peoples in this place? The native peoples who call themselves First Nations may have been the first to arrive. They may not. Perhaps there were other forms of humanity here before them. We don't really know. For example, we know that the Innu of the north are not the first people; before them there were the Thule. Less than a thousand years ago, the Innu displaced the Thule with better tools, better technology, better methods of war.
This planet is old, life on it long and varied. We wander in the forests and think of virgin trees, old growth. Yet these trees were once not here, having grown up in only the last thousand years. Before them there were other older trees, struck down by fire or disease, or other men. Old does not mean original. It just means we don't know what came before, and we are not patient enough to wait for what will come next.
That's why we need the chain link fence, to protect us from what we don't know, to protect us from what might come next. Just as my life is short, all our lives are short. We are all looking through that fence, through the gaps in the chain, into the unknown forest beyond. I have taken down my fence. I have decided to embrace that unknown, to wander once again, into the places where others may, or may not, have gone before, where something new awaits me. That is my version of humanity in action.
Monday, 13 July 2015
Silver Linings
I have recovered; the panting has stopped. When I transferred from the bed to my wheelchair, my cushion curled up underneath my right leg. It happens a lot. To uncurl it I usually do an in-chair lift and either uncurl it myself or ask Katherine to help. Today it seemed to take far more effort than normal, perhaps because the foot pads were not positioned properly on my wheelchair. Nonetheless, it was quite the performance. At the end I said to Katherine, "I've moved fucking fridges with less effort." Then I apologized for swearing. I don't do it all that often, but when I do I want it to count.
While there is all kinds of this stuff under this black cloud of ALS, I am reminded on a regular basis of the silver linings in my life. Many of them are here because of ALS; others have become more apparent because of ALS; some might have happened anyways, but they have happened sooner because of ALS. While I would not recommend this disease as a life enhancement strategy, there are bright moments peeking through those clouds on a regular basis.
Katherine is one example. Without ALS I would never have met her, never have had her sharing these wonderful adventures with me. Sure, I might have met someone else. Sure, I might have had other adventures. I might have taken up with someone really terrible too, if I was healthy, someone who didn't really care about me at all. I'm looking at what I have here, not what might have been. What I have is pretty darn good.
Cheryl is another great example. Here is a woman who would likely not have come into my life were it not for ALS. I have learned so much from her. I count on her compassion and love. Without her in my life, I would not have shared that wonderful adventure in Europe. I would likely not have explored or gone to the new places she found for us. More importantly, I would not have come to know how wonderful she is.
Then there are all my other friends, those who have been with me for years and who have come even closer with the onset of this illness. That closeness might have happened regardless, but it has certainly happened with the struggles of this illness. They, too, are silver linings in my clouded future.
There are lots of other things that can be looked at upside down. The elevator situation forced me into an amazing road adventure. Being forced to sell my boat meant other kinds of travel to places I would likely never have gone were I busy each and every summer on board ship. Being in a wheelchair brings lots of struggle, but it brings good parking too. Getting to eat whatever I want means being fat, but that also means living longer.
There are lots of upsides in my life. They are hard for me to see when I am struggling with getting into my wheelchair. They are difficult to appreciate when I tire so easily. The lustre comes off the silver when I think about my future. What I need to do, what I try so hard to do, is live in the sunshine that peeks through the dark cloud of my life, to live in the bright reflections cast off of those silver linings.
While there is all kinds of this stuff under this black cloud of ALS, I am reminded on a regular basis of the silver linings in my life. Many of them are here because of ALS; others have become more apparent because of ALS; some might have happened anyways, but they have happened sooner because of ALS. While I would not recommend this disease as a life enhancement strategy, there are bright moments peeking through those clouds on a regular basis.
Katherine is one example. Without ALS I would never have met her, never have had her sharing these wonderful adventures with me. Sure, I might have met someone else. Sure, I might have had other adventures. I might have taken up with someone really terrible too, if I was healthy, someone who didn't really care about me at all. I'm looking at what I have here, not what might have been. What I have is pretty darn good.
Cheryl is another great example. Here is a woman who would likely not have come into my life were it not for ALS. I have learned so much from her. I count on her compassion and love. Without her in my life, I would not have shared that wonderful adventure in Europe. I would likely not have explored or gone to the new places she found for us. More importantly, I would not have come to know how wonderful she is.
Then there are all my other friends, those who have been with me for years and who have come even closer with the onset of this illness. That closeness might have happened regardless, but it has certainly happened with the struggles of this illness. They, too, are silver linings in my clouded future.
There are lots of other things that can be looked at upside down. The elevator situation forced me into an amazing road adventure. Being forced to sell my boat meant other kinds of travel to places I would likely never have gone were I busy each and every summer on board ship. Being in a wheelchair brings lots of struggle, but it brings good parking too. Getting to eat whatever I want means being fat, but that also means living longer.
There are lots of upsides in my life. They are hard for me to see when I am struggling with getting into my wheelchair. They are difficult to appreciate when I tire so easily. The lustre comes off the silver when I think about my future. What I need to do, what I try so hard to do, is live in the sunshine that peeks through the dark cloud of my life, to live in the bright reflections cast off of those silver linings.
Sunday, 12 July 2015
Swimming In It
Writing a blog post at the end of a six hour drive takes a lot more discipline than it does at the start of the day. My energy has been well used through the day, what with driving, stopping for breaks, going fishing for an hour along the way. It's not that it was a bad day, in fact it was a good one. It's just that I am sore, stiff, and tired by this time.
This morning was a rough start. I had come to the conclusion that I was not going to be able to write in the morning thanks to the flakey Internet connection at the motel in Watson Lake. It's something you have to deal with up north, the fact that things like Internet and cell services are irregular at best. And perhaps someone can explain to me how my Wind cell phone registers on something called "Digicel". a Jamaican carrier, then gives me a message welcoming me to Jamaica!
Once I decided to give up on writing, I turned to get dressed. I flung one dead leg up across the other, took a good look at my brutally purple feet, then struggled to get my compression sock on. It was then that it happened, something that happens on a periodic basis as I deal with the absurdity which is my life these days. A wave of distress washed over me, like one of those rogue waves at Peggy's Cove which grabs the unsuspecting tourist and drags him into the Atlantic Ocean. Only my ocean is one of despair, and to be frank, self-pity. Yes, I admit it.
The overwhelming questions that run through my mind at these moments is "What the fuck happened? How the fuck did I get here? What the hell did I do wrong?" Of course it's all rather irrelevant. I am here because I am here. ALS is what happened. I did nothing wrong, nothing to earn what has become an almost bizarre caricature of a life. It just is, that's all.
When I get like this, the ocean is not the Atlantic, but despair and sadness. I struggle to keep my head above water. Katherine came over to hug me and tell me I was okay. I clung to her like she was a life preserver against this brutal sea. Those who have seen me go through these moments know how much I need to cling to something, or someone when this hits.
I work very hard at keeping my head above water, at ignoring the signs, pretending my life is "normal". I work very hard at keeping up the level of denial I need to stay afloat. Without that, I would descend quickly, drowning in this ice cold ocean of despair. Sometimes it's just too much to keep up the work. Sometimes I slip off the rocks. Then I have to take the time to recover, like I did this morning, and just keep going. The problem is that it's getting harder and harder to keep my head above water.
This morning was a rough start. I had come to the conclusion that I was not going to be able to write in the morning thanks to the flakey Internet connection at the motel in Watson Lake. It's something you have to deal with up north, the fact that things like Internet and cell services are irregular at best. And perhaps someone can explain to me how my Wind cell phone registers on something called "Digicel". a Jamaican carrier, then gives me a message welcoming me to Jamaica!
Once I decided to give up on writing, I turned to get dressed. I flung one dead leg up across the other, took a good look at my brutally purple feet, then struggled to get my compression sock on. It was then that it happened, something that happens on a periodic basis as I deal with the absurdity which is my life these days. A wave of distress washed over me, like one of those rogue waves at Peggy's Cove which grabs the unsuspecting tourist and drags him into the Atlantic Ocean. Only my ocean is one of despair, and to be frank, self-pity. Yes, I admit it.
The overwhelming questions that run through my mind at these moments is "What the fuck happened? How the fuck did I get here? What the hell did I do wrong?" Of course it's all rather irrelevant. I am here because I am here. ALS is what happened. I did nothing wrong, nothing to earn what has become an almost bizarre caricature of a life. It just is, that's all.
When I get like this, the ocean is not the Atlantic, but despair and sadness. I struggle to keep my head above water. Katherine came over to hug me and tell me I was okay. I clung to her like she was a life preserver against this brutal sea. Those who have seen me go through these moments know how much I need to cling to something, or someone when this hits.
I work very hard at keeping my head above water, at ignoring the signs, pretending my life is "normal". I work very hard at keeping up the level of denial I need to stay afloat. Without that, I would descend quickly, drowning in this ice cold ocean of despair. Sometimes it's just too much to keep up the work. Sometimes I slip off the rocks. Then I have to take the time to recover, like I did this morning, and just keep going. The problem is that it's getting harder and harder to keep my head above water.
Saturday, 11 July 2015
Missed Moose
As we were driving along the Alaska Highway yesterday, I caught sight of a moose feeding in a pond beside the highway. It seems so contented, bobbing around in the shallow water, head diving down for the soft weeds and plants on the bottom of the pond, mindless of the trucks and cars pounding by on the highway above. We stopped to take some pictures. Since the pond was at a bit of a distance, we used the short range telephoto lens. Shortly after, Katherine went to look at the pictures and discovered there was a malfunction in the camera; there were no moose pictures. We went back to try again, but the moose had moved on.
Life is kind of like that. You get to a place that seems so good, so easy, where everything is going right, where life seems to work. Then something happens, a malfunction in the universe, and your life is thrown off kilter. You try to go back to where it was before, but whatever was behind you is gone. Life has moved one once again. You can try to go back, but it just isn't the same.
There has been no seminal event lately for me, no missed camera shots. My life is simply moving forward. There is no going back. I am getting weaker. Hotel carpets are getting harder for me to transit. Transfers are tougher than they were a while ago. My arms are weakening. My days seem less alive. My lens on life is malfunctioning. I would like to go back to where it was before, even as little as yesterday. But yesterday is like those failed pictures, a lost image never to be recaptured.
The Nihilist in me says there is no point to all of this, that all I am is a part of a large happenstance. The Monotheist in me says there must be a purpose in all this, or else why would I be here; it's a self-centered, egotistical view that could only come from homo sapiens. Or there is always the Forrest Gump view, "I don't know if we each have a destiny, or if we're all just floating around accidental-like on a breeze, but I, I think maybe it's both. Maybe both is happening at the same time."
I don't think it matters. There are no pictures of the moose. I can't go back to yesterday. Tomorrow is coming regardless. I think I am mostly just along for the ride.
Life is kind of like that. You get to a place that seems so good, so easy, where everything is going right, where life seems to work. Then something happens, a malfunction in the universe, and your life is thrown off kilter. You try to go back to where it was before, but whatever was behind you is gone. Life has moved one once again. You can try to go back, but it just isn't the same.
There has been no seminal event lately for me, no missed camera shots. My life is simply moving forward. There is no going back. I am getting weaker. Hotel carpets are getting harder for me to transit. Transfers are tougher than they were a while ago. My arms are weakening. My days seem less alive. My lens on life is malfunctioning. I would like to go back to where it was before, even as little as yesterday. But yesterday is like those failed pictures, a lost image never to be recaptured.
The Nihilist in me says there is no point to all of this, that all I am is a part of a large happenstance. The Monotheist in me says there must be a purpose in all this, or else why would I be here; it's a self-centered, egotistical view that could only come from homo sapiens. Or there is always the Forrest Gump view, "I don't know if we each have a destiny, or if we're all just floating around accidental-like on a breeze, but I, I think maybe it's both. Maybe both is happening at the same time."
I don't think it matters. There are no pictures of the moose. I can't go back to yesterday. Tomorrow is coming regardless. I think I am mostly just along for the ride.
Friday, 10 July 2015
I Bite My Tongue These Days
I'm going to have to change the way I eat. Now I know that there are some of you out there with your own thoughts on this; just hold on to them. This change is not about diet. It's not about my ability to inhale a half a cow at one sitting before anyone else has taken more than a couple of bites. It's not about my food choices, either.
Over the last six months or more, I have noticed an increasing tendency for me to bite the inside of my lips, cheek and tongue. Obviously this happens when I eat, but it also happens when I drink, when I talk, when I am just sitting, doing nothing. Biting myself is not just mastication related; it happens whenever my teeth move inside my mouth, something that all of us do all of the time, only without noticing.
A while ago I was out with my daughter for dinner and this happened. She said "Dad, if you take smaller bites and slow down, maybe it won't happen as much." I thought to myself, "That's kind of like telling me if I paid more attention to what I was holding and slowed down, I wouldn't drop things as much." Nonetheless, out of an abundance of respect for her opinion, I tried it. For the last few weeks I have paid a lot of attention to what I eat, bite sizes, and chewing carefully.
The situation is unchanged. I bit my lips and tongue just as much, whether I am eating slow or fast, big bites or small. I have learned a few things, however. I've learned that I tend to bite myself more when I eat crispy things, like apples or celery. I have to be very careful with these foods. I've learned that I bite myself more when I eat complex foods with multiple textures, things like a good burger with lettuce, tomato, cheese, and a big patty. I need to be very careful.
I find I prefer to chew on the left side of my mouth, something that I haven't paid a lot of attention to. Since my left side is where I am getting weaker, it makes sense that I would bite myself more here, and with a chewing preference for the left, it makes even more sense. Finally, I find I bite myself later in the eating process, rather than earlier. My guess is this is simple because of eating habits and the fact that I am thinking less about the process and more about enjoying my food.
Losing the ability to eat will not happen all at once. I am not ready for soft food, blended foot, simple food, at least not yet. I am, however, clearly losing my ability to not bite myself. I have to start with that.
Over the last six months or more, I have noticed an increasing tendency for me to bite the inside of my lips, cheek and tongue. Obviously this happens when I eat, but it also happens when I drink, when I talk, when I am just sitting, doing nothing. Biting myself is not just mastication related; it happens whenever my teeth move inside my mouth, something that all of us do all of the time, only without noticing.
A while ago I was out with my daughter for dinner and this happened. She said "Dad, if you take smaller bites and slow down, maybe it won't happen as much." I thought to myself, "That's kind of like telling me if I paid more attention to what I was holding and slowed down, I wouldn't drop things as much." Nonetheless, out of an abundance of respect for her opinion, I tried it. For the last few weeks I have paid a lot of attention to what I eat, bite sizes, and chewing carefully.
The situation is unchanged. I bit my lips and tongue just as much, whether I am eating slow or fast, big bites or small. I have learned a few things, however. I've learned that I tend to bite myself more when I eat crispy things, like apples or celery. I have to be very careful with these foods. I've learned that I bite myself more when I eat complex foods with multiple textures, things like a good burger with lettuce, tomato, cheese, and a big patty. I need to be very careful.
I find I prefer to chew on the left side of my mouth, something that I haven't paid a lot of attention to. Since my left side is where I am getting weaker, it makes sense that I would bite myself more here, and with a chewing preference for the left, it makes even more sense. Finally, I find I bite myself later in the eating process, rather than earlier. My guess is this is simple because of eating habits and the fact that I am thinking less about the process and more about enjoying my food.
Losing the ability to eat will not happen all at once. I am not ready for soft food, blended foot, simple food, at least not yet. I am, however, clearly losing my ability to not bite myself. I have to start with that.
Thursday, 9 July 2015
Forest Fires And Highways
It's raining again today here in Anchorage. This is a good thing; the whole of the north needs rain, as does most of BC. The forest fires are running wild throughout Alaska, Yukon, BC, Alberta and Saskatchewan. It seems like the northwest is on fire everywhere you go. Even the Northwest Territories is having a bad go.
I learned this morning that the Alaska Highway was shut down between Watson Lake and Fort Nelson due to a forest fire. I check the highway report. As of now, they are taking people through following a pilot car to make sure drivers get through safely. If the fire gets bad again, or changes direction towards the highway again, the road will once again be closed to traffic.
If that happens, most of us who are experienced with driving here in the north will head down the Dease Lake road, that is if its not closed as well. That road takes you from Watson Lake down to Terrace, BC. From there you head east to Prince George where there are lots of options for getting to Calgary. At least, that is my plan. I always have a back-up plan, and usually a back up plan for my back up plan. If it gets really bad, we can always catch a plane from Whitehorse to Calgary, then return in a week or two to get my truck, or we could take the ferry from Haines to Prince Rupert. It's not a cheap plan, but it's a plan.
Driving up here is always a bit of an adventure. Never mind the constant construction. Never mind the RV's that max out at 50 miles an hour on the two lane highway. Never mind the fires, the weather, the bugs, all of that. Yesterday we rounded a turn on the Seward Highway at full speed only to see a gigantic moose in the middle of the road. I was able to stop in plenty of time; I expect these kinds of events. Others have not been so fortunate this summer. I've seen the wreckage beside the road.
I'm not not worried about getting home. I am a bit worried about the mixed blessing of rainstorms up country. The rain up there is not like the rain down here; up there you get wind and lightening too. It's always a mixed blessing. The rain can slow the fires, or the wind can whip them up and the lightening can start new ones. We'll have to see what happens when we get to Watson Lake. At least we have a motel booked in advance. If the road is closed, it's gonna be crowded.
I learned this morning that the Alaska Highway was shut down between Watson Lake and Fort Nelson due to a forest fire. I check the highway report. As of now, they are taking people through following a pilot car to make sure drivers get through safely. If the fire gets bad again, or changes direction towards the highway again, the road will once again be closed to traffic.
If that happens, most of us who are experienced with driving here in the north will head down the Dease Lake road, that is if its not closed as well. That road takes you from Watson Lake down to Terrace, BC. From there you head east to Prince George where there are lots of options for getting to Calgary. At least, that is my plan. I always have a back-up plan, and usually a back up plan for my back up plan. If it gets really bad, we can always catch a plane from Whitehorse to Calgary, then return in a week or two to get my truck, or we could take the ferry from Haines to Prince Rupert. It's not a cheap plan, but it's a plan.
Driving up here is always a bit of an adventure. Never mind the constant construction. Never mind the RV's that max out at 50 miles an hour on the two lane highway. Never mind the fires, the weather, the bugs, all of that. Yesterday we rounded a turn on the Seward Highway at full speed only to see a gigantic moose in the middle of the road. I was able to stop in plenty of time; I expect these kinds of events. Others have not been so fortunate this summer. I've seen the wreckage beside the road.
I'm not not worried about getting home. I am a bit worried about the mixed blessing of rainstorms up country. The rain up there is not like the rain down here; up there you get wind and lightening too. It's always a mixed blessing. The rain can slow the fires, or the wind can whip them up and the lightening can start new ones. We'll have to see what happens when we get to Watson Lake. At least we have a motel booked in advance. If the road is closed, it's gonna be crowded.
Wednesday, 8 July 2015
Handicapped Parking Spots
It's a drizzley, bleary kind of day here in Anchorage. Yesterday we were inland, smothered by the smoke from thousands of acres of forest fires, sweltering under the heat and humidity. Today we are next to the Gulf of Alaska, clenched in the grip of its wet, cold fingers. I've been spending the last half hour or so just looking out the window at the rain, watching the pavement in the parking lot get wetter and wetter, observing the slouch of the leaves on the tree branches around the edge of the hotel.
That's when I noticed it. There are at least 10, and perhaps a dozen, handicapped parking spots here at this hotel. This is a relatively new property, or at least the parking lot is relatively new. The building seems it as well. Thanks to the advent of the ADA, you find more handicapped parking spots at newer properties, be they hotels or shopping malls or whatever. The more interesting thing is how many of them seem to be in use, full so much of the time. It makes me wonder what people did before, or was it perhaps that I just didn't notice.
I am about to make an observation totally unfounded by research data, subject to confirmation bias, and without substantiating facts. This means it is probably wrong. Nonetheless, here goes. I think there are two fundamental reasons behind the increase in the numbers of people using the handicapped parking spots.
First, there is an aging population. With age comes infirmity, at least for most of us. Those of us who are handicapped earlier in life, either through disease or illness, are far outnumbered by those for whom aging is the villain. As we age, we become more susceptible to the injuries of life, perhaps even more to the general failing of our bodies. We expect, and certainly see, more seniors as handicapped, or at least physically less able.
Second, the astounding level of obesity in American society has to have impacted the handicapped numbers. The self-inflicted wound of morbid obesity plays hell on knees, backs, feet, and all other parts of the human body. I see people who can barely walk the length of the potato chip aisle in Walmart thanks to their massive bulk and I wonder how they remain mobile. I see more of them in motorized shopping carts and scooters, so I know they don't walk as much as they should.
Since part of the requirement to get a handicapped card is difficulty walking 100 feet, it's no surprise that someone over 300 pounds needs a handicapped tag, especially if they are over 40 years of age, when the body really feels the effects of that added weight. I wonder if that requirement is helping, or hurting. I get a sense that doctors are more willing to give out handicapped tags than they are to tell someone they need to lose weight. But remember, I have no facts to back this up; it is pure speculation on my part.
I know some may see this as a judgmental post, targeted perhaps at the aging or the obese. It's actually my own personal observation. I don't see all that many wheelchairs and walkers in use by those in handicapped spots. I know some have hidden injuries; I make no assumptions. They have a tag; they can park. I'm just glad that there are plenty of handicapped parking spots these days. It looks like we are going to need them.
That's when I noticed it. There are at least 10, and perhaps a dozen, handicapped parking spots here at this hotel. This is a relatively new property, or at least the parking lot is relatively new. The building seems it as well. Thanks to the advent of the ADA, you find more handicapped parking spots at newer properties, be they hotels or shopping malls or whatever. The more interesting thing is how many of them seem to be in use, full so much of the time. It makes me wonder what people did before, or was it perhaps that I just didn't notice.
I am about to make an observation totally unfounded by research data, subject to confirmation bias, and without substantiating facts. This means it is probably wrong. Nonetheless, here goes. I think there are two fundamental reasons behind the increase in the numbers of people using the handicapped parking spots.
First, there is an aging population. With age comes infirmity, at least for most of us. Those of us who are handicapped earlier in life, either through disease or illness, are far outnumbered by those for whom aging is the villain. As we age, we become more susceptible to the injuries of life, perhaps even more to the general failing of our bodies. We expect, and certainly see, more seniors as handicapped, or at least physically less able.
Second, the astounding level of obesity in American society has to have impacted the handicapped numbers. The self-inflicted wound of morbid obesity plays hell on knees, backs, feet, and all other parts of the human body. I see people who can barely walk the length of the potato chip aisle in Walmart thanks to their massive bulk and I wonder how they remain mobile. I see more of them in motorized shopping carts and scooters, so I know they don't walk as much as they should.
Since part of the requirement to get a handicapped card is difficulty walking 100 feet, it's no surprise that someone over 300 pounds needs a handicapped tag, especially if they are over 40 years of age, when the body really feels the effects of that added weight. I wonder if that requirement is helping, or hurting. I get a sense that doctors are more willing to give out handicapped tags than they are to tell someone they need to lose weight. But remember, I have no facts to back this up; it is pure speculation on my part.
I know some may see this as a judgmental post, targeted perhaps at the aging or the obese. It's actually my own personal observation. I don't see all that many wheelchairs and walkers in use by those in handicapped spots. I know some have hidden injuries; I make no assumptions. They have a tag; they can park. I'm just glad that there are plenty of handicapped parking spots these days. It looks like we are going to need them.
Tuesday, 7 July 2015
Making My Own Decisions
Things are a bit difficult this morning. Katherine and I had one of our very rare differences of opinion last night. As with most of these things, it was a simple event that clouded a much more serious issue. She wanted to put skin creme and powder on my feet and other personal areas after my shower. I just wanted to be left alone, just this time. I am usually fairly patient around all of this; it makes her happy to look after me in this way. Sometimes, however, I just feel like I am being pushed around. So last night I said "No" and was quite insistent about it. She got upset that I was refusing to be cared for.
It's an interesting bit of ground to cover. At what point can I, as an ALS patient, refuse a particular bit of care? In my mind, that point should be always and anytime. I am the one who gets to decide how my body is cared for. I am the one who gets to say yes, or no, to a particular treatment or activity. On the other hand, Katherine cares for me deeply and this activity is an intense part of her caring ritual. To refuse care is to refuse her, something that undoubtedly hurts.
I was thinking last night, as she was pushing forward, insisting that I submit, because, in her mind, I needed his act of care. I wondered if the genders were reversed, what would the situation be? If I were a woman saying no to a mail caregiver who wanted to put cream and powder in my private places, how would that play out? What would be my defenses against someone physically stronger than me? Would it end up with a call to the police? What would the charge be?
It's a complicated thing, this caregiver role, especially when it intersects with a more personal role. That's one of the reasons I have always said I don't want Katherine as a caregiver. There is a degree of entitlement when she believes she knows what is best for me, when she feels I need care even if I don't want it. She gets upset when I say "no", and even more upset when I push back. It's got to be a tough balancing act, letting me live while watching me die. I don't care for it either, but I still need to make my own decisions, regardless.
It's an interesting bit of ground to cover. At what point can I, as an ALS patient, refuse a particular bit of care? In my mind, that point should be always and anytime. I am the one who gets to decide how my body is cared for. I am the one who gets to say yes, or no, to a particular treatment or activity. On the other hand, Katherine cares for me deeply and this activity is an intense part of her caring ritual. To refuse care is to refuse her, something that undoubtedly hurts.
I was thinking last night, as she was pushing forward, insisting that I submit, because, in her mind, I needed his act of care. I wondered if the genders were reversed, what would the situation be? If I were a woman saying no to a mail caregiver who wanted to put cream and powder in my private places, how would that play out? What would be my defenses against someone physically stronger than me? Would it end up with a call to the police? What would the charge be?
It's a complicated thing, this caregiver role, especially when it intersects with a more personal role. That's one of the reasons I have always said I don't want Katherine as a caregiver. There is a degree of entitlement when she believes she knows what is best for me, when she feels I need care even if I don't want it. She gets upset when I say "no", and even more upset when I push back. It's got to be a tough balancing act, letting me live while watching me die. I don't care for it either, but I still need to make my own decisions, regardless.
Monday, 6 July 2015
Another Town, Another Morning
It's 10:00 AM. I am up early, dressed, writing my blog well before my normal time of nearly 11:30. I actually woke up at 8:00 AM this morning. Katherine asked if I was going to get up, to which I replied "Hell no." I closed my eyes and managed to slog off until 9:00 AM. I suspect this early start is in part due to the time change yesterday; we are now on Alaska time. I know for certain that going to bed at around 9:30 PM last night certainly has something to do with it.
The math for me is relatively simple. Take my bed time and add 12 hours. That is when I will be ready to get up. At home I usually go to bed at around 10:00 or 11:00 PM, except on my nights out, in which case all bets are off. Here on the road, Katherine likes to stay up, usually until after I go to sleep. She does not sleep well in strange places, and there is no place stranger than here in the north in summer, where the sun shines as brightly at midnight as is does at noon.
Regardless of when I awaken, it still takes me quite some time to get my body going. My eyes open, my brain is active, telling my body to get started. My body laughs back in derision, saying "Hell no" in return. It usually takes about a half an hour between brain awake and body awake. On the road, a nice thing happens in that time. Katherine gets coffee and prepares a light breakfast from our food kit. When my body finally moves, there is food and drink at hand. She does this at home too, but here it is all the nicer.
While I am struggling with waking, Katherine is busy packing, having been up for an hour or so before me. She stays up later, sleeps less, and gets up earlier. She is normal; I am not. She helps me get into and out of the bathroom, often a must in places without safety bars or accessible toilets. While I dress, she gets ready to load the truck. While I write, she loads the truck and prepares for the day on the road. In other words, she does all the heavy work; I get to do the driving.
This is not an equal load. She does a lot more than I. All I can do is remind myself that she wants to be here, that she is on an adventure that would likely not happen without me. It's the only way I can feel good about the arrangement. I love being on the road. I love that she is here. I wish I could do more.
The math for me is relatively simple. Take my bed time and add 12 hours. That is when I will be ready to get up. At home I usually go to bed at around 10:00 or 11:00 PM, except on my nights out, in which case all bets are off. Here on the road, Katherine likes to stay up, usually until after I go to sleep. She does not sleep well in strange places, and there is no place stranger than here in the north in summer, where the sun shines as brightly at midnight as is does at noon.
Regardless of when I awaken, it still takes me quite some time to get my body going. My eyes open, my brain is active, telling my body to get started. My body laughs back in derision, saying "Hell no" in return. It usually takes about a half an hour between brain awake and body awake. On the road, a nice thing happens in that time. Katherine gets coffee and prepares a light breakfast from our food kit. When my body finally moves, there is food and drink at hand. She does this at home too, but here it is all the nicer.
While I am struggling with waking, Katherine is busy packing, having been up for an hour or so before me. She stays up later, sleeps less, and gets up earlier. She is normal; I am not. She helps me get into and out of the bathroom, often a must in places without safety bars or accessible toilets. While I dress, she gets ready to load the truck. While I write, she loads the truck and prepares for the day on the road. In other words, she does all the heavy work; I get to do the driving.
This is not an equal load. She does a lot more than I. All I can do is remind myself that she wants to be here, that she is on an adventure that would likely not happen without me. It's the only way I can feel good about the arrangement. I love being on the road. I love that she is here. I wish I could do more.
Sunday, 5 July 2015
Plus ça Change
Today was another reminder that internet access in the north doesn't mean real internet access, and no matter where I go there will always be some hotel or motel willing to completely misunderstand the concept of wheelchair access. Hence the late, really late, blog today. It's 5:30 PM here in Tok, Alaska, and way later everywhere else.
The day started with me trying to write my blog in our hotel in Dawson City. The Westmark Hotel is comprised of four separate buildings, the main building, Gertie's wing, the Robert Service wing and the Jack London wing. In the main building the internet signal is strong. In the outer buildings, the internet signal is weak to non-existent. This morning it was non-existent.
Given the situation, I said to Katherine that I would write my blog in the main building, while sitting at one of the patio tables enjoying a coffee. She went to do the check-out, and when she returned she said there is no way I could get into the main building and patio today; the place was jammed. So I decided to write my blog later today.
We headed out over the "Top Of The World" highway, first crossing the Yukon River by ferry, then up the hill in West Dawson and on our way, eventually, to Tok, AK. The road is amazing, set high in the mountains, running along ridges and mountainsides, with a view of hundreds of miles of forested valleys. Along the way the road ran from brand new pavement all the way down to barely upgraded logging road. It was a great drive.
On arriving in Tok, we went immediately to Young's Motel, where I had called ahead and booked what they called one of their "handi-rooms", not fully wheelchair accessible but supposedly with wheelchair access and wider doors. On arrival we discovered that there was nothing "handi" about the room, nothing at all. The doors may have been wide enough, but there was a 10" sill on the entry door. When we asked about a ramp, the proprietor said they didn't have one, but someone could help lift me into the room. As Katherine noted in response, "Every time?"
We took a look around Tok and found the Golden Bear Motel. They have a fully accessible room but it was already booked. However the manager put together a workable solution in no time, getting a portable ramp and giving us access to standard room. I can even get into the bathroom, but alas there are no bars. Nonetheless, we are in and safe.
Plus, I booked the wheelchair room in advance for our return trip. I've learned not to leave this stuff to the word of motel staff, or to chance.
The day started with me trying to write my blog in our hotel in Dawson City. The Westmark Hotel is comprised of four separate buildings, the main building, Gertie's wing, the Robert Service wing and the Jack London wing. In the main building the internet signal is strong. In the outer buildings, the internet signal is weak to non-existent. This morning it was non-existent.
Given the situation, I said to Katherine that I would write my blog in the main building, while sitting at one of the patio tables enjoying a coffee. She went to do the check-out, and when she returned she said there is no way I could get into the main building and patio today; the place was jammed. So I decided to write my blog later today.
We headed out over the "Top Of The World" highway, first crossing the Yukon River by ferry, then up the hill in West Dawson and on our way, eventually, to Tok, AK. The road is amazing, set high in the mountains, running along ridges and mountainsides, with a view of hundreds of miles of forested valleys. Along the way the road ran from brand new pavement all the way down to barely upgraded logging road. It was a great drive.
On arriving in Tok, we went immediately to Young's Motel, where I had called ahead and booked what they called one of their "handi-rooms", not fully wheelchair accessible but supposedly with wheelchair access and wider doors. On arrival we discovered that there was nothing "handi" about the room, nothing at all. The doors may have been wide enough, but there was a 10" sill on the entry door. When we asked about a ramp, the proprietor said they didn't have one, but someone could help lift me into the room. As Katherine noted in response, "Every time?"
We took a look around Tok and found the Golden Bear Motel. They have a fully accessible room but it was already booked. However the manager put together a workable solution in no time, getting a portable ramp and giving us access to standard room. I can even get into the bathroom, but alas there are no bars. Nonetheless, we are in and safe.
Plus, I booked the wheelchair room in advance for our return trip. I've learned not to leave this stuff to the word of motel staff, or to chance.
Saturday, 4 July 2015
The Lounge At The Eagle Plains Hotel
Every once in a while, when you travel to new and different places, you find somewhere that makes you feel at home, comfortable, like you belong. They are not always the places you would expect, nor are they where you would expect to find them. Sometimes these places just plain surprise you, coming completely unexpectedly. We've found them in Florida, in South Dakota, and now we have found one in the Yukon.
Eagle Plains Hotel, and particularly the lounge at Eagle Plains Hotel, is that kind of place for me, and for Katherine too, as it happens. When we arrived there yesterday, were were eager to claim what we have decided is our "regular table" after only one prior visit, at least for Katherine; I've been here before and I already know I like it. For the second time in a row, we sat down to nachos and beer, with sour cream and salsa on the side. For the second time, we sat at our table and looked out the big picture window at the treetops just over the nearby ridge.
The lounge is old school, with a coin operated pool table where the coin slot doesn't matter, stuffed animals standing about, moose and deer heads mounted on the walls, and plenty of local photos. The beer supply is bottled only, and limited in selection. What can you expect from a lounge which is 200 miles from the nearest town, Inuvik at that, and more than 500 miles from Whitehorse, the nearest real source of supplies? You can't just call for a quick resupply up here; it takes time.
As with all real places, it's not just the setting which makes it work, although the setting is incredibly cool. It's the people, too. This "oasis in the wildernes" has attracted some of the nicest, caring people. These are people who will do whatever they can to make it work, whatever it is. For example, there are three rather large steps to get down into the lounge. When I arrive, the staff rounds up three or four of their more robust patrons, and I get down the stairs. The reverse happens when I want to leave.
What happens when I want to pee? Discretion is what happens. Perhaps the best way to reflect on it is this. When we left this morning, the first question out of the manager's mouth was "Did Richard get down into the lounge okay yesterday?" Of course the answer was "yes". How could it not be? After all, it's the lounge at the Eagle Plains Hotel.
Eagle Plains Hotel, and particularly the lounge at Eagle Plains Hotel, is that kind of place for me, and for Katherine too, as it happens. When we arrived there yesterday, were were eager to claim what we have decided is our "regular table" after only one prior visit, at least for Katherine; I've been here before and I already know I like it. For the second time in a row, we sat down to nachos and beer, with sour cream and salsa on the side. For the second time, we sat at our table and looked out the big picture window at the treetops just over the nearby ridge.
The lounge is old school, with a coin operated pool table where the coin slot doesn't matter, stuffed animals standing about, moose and deer heads mounted on the walls, and plenty of local photos. The beer supply is bottled only, and limited in selection. What can you expect from a lounge which is 200 miles from the nearest town, Inuvik at that, and more than 500 miles from Whitehorse, the nearest real source of supplies? You can't just call for a quick resupply up here; it takes time.
As with all real places, it's not just the setting which makes it work, although the setting is incredibly cool. It's the people, too. This "oasis in the wildernes" has attracted some of the nicest, caring people. These are people who will do whatever they can to make it work, whatever it is. For example, there are three rather large steps to get down into the lounge. When I arrive, the staff rounds up three or four of their more robust patrons, and I get down the stairs. The reverse happens when I want to leave.
What happens when I want to pee? Discretion is what happens. Perhaps the best way to reflect on it is this. When we left this morning, the first question out of the manager's mouth was "Did Richard get down into the lounge okay yesterday?" Of course the answer was "yes". How could it not be? After all, it's the lounge at the Eagle Plains Hotel.
Friday, 3 July 2015
A Late Start
It's 11:00 AM here in Inuvik, and I am no where near ready to go yet. Both Katherine and I slept late this morning. This is no surprise for me; it is certainly unusual for Katherine. However she was up late last night, filled with the excitement of her trip to Tuktoyaktuk and the Arctic Ocean. I understand that excitement; I've felt it myself.
There is a rhythm to life that you develop down south which gets pretty much blown away up here. All the normal cues for rising and sleeping, eating and playing; they get pushed about by the 24 hour sunlight. When you sleep, the sun is high in the sky. When you wake, that same sun is still there. During the day, all you do is open the blackout curtains; the sun shines in. At night, you close those same curtains to make the room dark, but some light forever creeps in through the cracks.
Midnight came and went last night as we looked at pictures, talking about the day, laughing about our adventures. We didn't notice. I did not see the time when the blackout curtains finally closed. It doesn't really matter. They finally closed, and even then Katherine could not sleep. It happens to her sometimes too, that mystery called sleep staying off in the distance while we wait in vain for rest to come.
It doesn't really matter in other ways too. Checkout is 11:00 AM but no hotel minds an extra hour or so. Only once, in all my years of travel, have I been denied that extra bit of time when necessary. That was at the Fairmont Hot Springs, where they said a sort of yes, but asked if we could vacate as quickly as possible; they had a full hotel and were short on cleaning staff. We were out by 11:00 AM.
The drive from here to Eagle Plains is a reverse trek down the Dempster. It doesn't seem quite so challenging on the way back. It will still be five hours of driving. It will still be that incredible scenery, those unimaginably large landscapes, the rapid change from cold to hot over a few miles, the endless tundra, taiga, boreal forest. Only this time we are headed south, a bit later than planned.
There is a rhythm to life that you develop down south which gets pretty much blown away up here. All the normal cues for rising and sleeping, eating and playing; they get pushed about by the 24 hour sunlight. When you sleep, the sun is high in the sky. When you wake, that same sun is still there. During the day, all you do is open the blackout curtains; the sun shines in. At night, you close those same curtains to make the room dark, but some light forever creeps in through the cracks.
Midnight came and went last night as we looked at pictures, talking about the day, laughing about our adventures. We didn't notice. I did not see the time when the blackout curtains finally closed. It doesn't really matter. They finally closed, and even then Katherine could not sleep. It happens to her sometimes too, that mystery called sleep staying off in the distance while we wait in vain for rest to come.
It doesn't really matter in other ways too. Checkout is 11:00 AM but no hotel minds an extra hour or so. Only once, in all my years of travel, have I been denied that extra bit of time when necessary. That was at the Fairmont Hot Springs, where they said a sort of yes, but asked if we could vacate as quickly as possible; they had a full hotel and were short on cleaning staff. We were out by 11:00 AM.
The drive from here to Eagle Plains is a reverse trek down the Dempster. It doesn't seem quite so challenging on the way back. It will still be five hours of driving. It will still be that incredible scenery, those unimaginably large landscapes, the rapid change from cold to hot over a few miles, the endless tundra, taiga, boreal forest. Only this time we are headed south, a bit later than planned.
Thursday, 2 July 2015
Burned Out In Inuvik
I must be reaching some level of burn out, some level of exhaustion within my emotions. Here I am on what many, including me, would consider a trip of a lifetime, and adventure beyond belief. Here I am well inside the Arctic Circle, under the midnight sun, where there's incredible scenery and widlife, and I am spending my afternoon in my hotel room, wishing I was at home.
Katherine is gone this afternoon; she took a tour to Tuktoyaktuk, to the Arctic Ocean. I could not, and cannot, go. It's a small plane with no room for someone in a wheelchair. Even jet planes struggle with me; imagine a little six-seater. Clearly I could not come along. I wanted Katherine to go; I've been there already, so it's not so bad.
After dropping her off at the tour assembly point, I followed the tour van to the airport and got a few pictures, from behind the fence, of Katherine and the other passengers getting on the plane. Oddly enough, the fellow passengers are a Chinese family from Vancouver. I asked her about them and she said "They only speak Mandarin, but the son speaks English so it's okay." Katherine speaks Cantonese. They are from mainland China whereas Katherine grew up in Hong Kong.
Once her flight was safely up in the air, I went for a drive around Inuvik. It was surprising to see how many of the buildings offered no access whatsoever to someone in a wheelchair. A few did, particularly those in newer buildings. Government service offices did. So did the RCMP. Must the local restaurants and bars are completely closed to me. Too bad; I want to go out tonight.
When I got back to the hotel, I had further discussions with management here about the lack of handicapped parking and the lack of safety bars in the bathroom. That whole thing pretty much wore me out. So I went to my room, about 2 hours ago, and have happily remained here since, surfing the web and reading. I know I should be out exploring; I just don't feel up to it. If you asked me what I really wanted, I would answer that I wanted to be at home. Yep, I must be burned out.
Katherine is gone this afternoon; she took a tour to Tuktoyaktuk, to the Arctic Ocean. I could not, and cannot, go. It's a small plane with no room for someone in a wheelchair. Even jet planes struggle with me; imagine a little six-seater. Clearly I could not come along. I wanted Katherine to go; I've been there already, so it's not so bad.
After dropping her off at the tour assembly point, I followed the tour van to the airport and got a few pictures, from behind the fence, of Katherine and the other passengers getting on the plane. Oddly enough, the fellow passengers are a Chinese family from Vancouver. I asked her about them and she said "They only speak Mandarin, but the son speaks English so it's okay." Katherine speaks Cantonese. They are from mainland China whereas Katherine grew up in Hong Kong.
Once her flight was safely up in the air, I went for a drive around Inuvik. It was surprising to see how many of the buildings offered no access whatsoever to someone in a wheelchair. A few did, particularly those in newer buildings. Government service offices did. So did the RCMP. Must the local restaurants and bars are completely closed to me. Too bad; I want to go out tonight.
When I got back to the hotel, I had further discussions with management here about the lack of handicapped parking and the lack of safety bars in the bathroom. That whole thing pretty much wore me out. So I went to my room, about 2 hours ago, and have happily remained here since, surfing the web and reading. I know I should be out exploring; I just don't feel up to it. If you asked me what I really wanted, I would answer that I wanted to be at home. Yep, I must be burned out.
Wednesday, 1 July 2015
I Can Still Wipe My Own Ass, Mostly
"At least I can still wipe my own ass". It's a quote, sort of, from "Tuesdays with Morrie" by Mitch Albom, a book chronicling the descent of Morrie Schwartz through ALS. Later, at one point in the book, Morrie confides that he can no longer wipe his own ass. The book presents it as an event, but really it isn't; it's a process of decline that we all go through with ALS.
I can still wipe my own ass, mostly. When I am at home I have the bidet seat to help me with cleanliness in that part of my anatomy. On some days, however, cleanliness is not only next to Godliness; it's next to impossible. Some days, no matter what I do, I need help in that arena. These days happen rarely at home, but they happen more often out here on the road.
Without the bidet seat, cleaning my derriere means using a washcloth. The process starts with the normal route, toilet paper. I have trouble reaching under me because of the failing muscles in my legs and my inability to contort. I can't stand, nor even lift slightly, to aid in the cleaning process. So I do my best with paper, then finish the job, if you will, using a wet washcloth. It can be a messy business sometimes. Every once in a while, it is also an incomplete business. This discovery is usually recognized when I make the transfer, discovering a stain on the toilet seat where I sat for the transfer.
After discovering my failing attempts, the next steps can get embarrassing. When I am alone, I try again or simply accept that my underwear are going to take a beating that day. Or I head straight for the shower if I can. When Katherine is with me, she will take charge, ordering me face down on my bed, cleaning what I can no longer clean. I don't know how she does it, but she manages to do this task without negative comment, without attitude, without emotion. She just says "It has to be done."
I have often said that PALS need to be careful not to turn their lover into a care giver. My assumption has always been that it affects the other person to have to spend so much time with difficult tasks like this, that they begin to look at their partner more as a patient. It turns out the effect is as much in the me as Katherine. She doesn't seem to mind; I have difficulty dealing with it.
I can still wipe my own ass. It won't be that way forever. The difficulties I have now will only increase. I will need more and more help, until one day it's only the help that allows me to wipe my ass. It's a tough thing to deal with.
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