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.
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