Thursday, 7 February 2013

First Thing, Last Thing

My daughter Katie's prompt card suggests I write about the first thing I think about in the day, and the last thing I think about in the day. It's not what you think. You see, other than this one small health issue I am pretty much like every other 57 year old man on the planet. When I wake up in the morning, the first thing I think about is going pee.

Then I begin to think about what what I need to do to get to the bathroom, working myself up and out of bed, looking for my cane and glasses, wobbling my way down the hall worrying that I don't fall, and then relief. So I guess the second thing I think about each day is ALS.

Most of my day is pretty normal. I get up, I get dressed, I have my coffee, I do my blog, I go to work, I come home after work and have dinner, I read, I sleep. Each  day there is a variation. For example last night Tonny and Brad came over and helped me transfer some wine from the primary fermenter into a carboy for clarifying. This process, by the way, is called racking off the wine. They stayed for a bit and we drank some wine and talked about guy stuff - women, food, work, and oh yes, women.

I have the same trials and tribulations as everyone else, plus a few of mine that are a bit extra. For example I got home yesterday to find two letters in my mailbox. One was a photo radar ticket from the Calgary Police Service. Apparently my truck still likes to speed even though I try very hard to keep it from acting so enthusiastically when it sees an open stretch of road. I am not unhappy. I was speeding, and that means I can still drive, something that will change in the next year.

The next envelope was a letter from the Family Maintenance Enforcement Plan. Apparently having a terminal illness does not mean my ex-wife will forgive me her spousal support payments. You see I recently decided that I will need my money to pay my health care costs rather than paying so she can stay home and not work. I find it sad that I am rapidly losing my abilities to work and live and yet the only emails or letters or communications from my ex are demands for money. Never a word of sympathy, never a word of care. Simply demands for money. She has a court order and she has a legal right to enforce it. I am told this is normal in divorce, to be expected in life.

Like the rest of you I have money challenges, only mine are a bit different. For example yesterday I got the quote for my new wheelchair. The government will pay a given amount for a wheelchair for an ALS patient. I pay 25% up to $500 and a basic wheelchair costs about $2,000. Since they don't expect me to live long, the government says all I need is a basic, heavy, clunky wheelchair.

Those of you who know me know I move about fairly quickly even in that monstrosity. I want a chair more suited to my lifestyle and enthusiasm. I need a strong yet lighter weight chair, one that is easy to get in and out of my truck, one that is easier to handle on the streets and sidewalks of Calgary, one that I can get onto the sailboat. The chair I want will cost about $5,000. I have asked for funding from the government; I don't expect to get it. With a short lifespan I am a bad investment. As has ever been the case, I will pay.

So I think about all these things in my day. Most of them are the same cares that the rest of you have, some of them are different. Most of them are tinged with my reality, yet most of them are mundane. I go through my day dealing with life as it comes. I get up, I go through my day, then I sleep. Routine.

At the end of the day I push myself into bed. I move about clumsily as my legs don't help me much. I adjust my covers as best I can, trying to use my right foot, with its limited strength, to lift the covers off of my left foot, which is pretty much done. I adjust, I turn, I fidget.

Then, as I drift off to sleep, the last thing I think about is, well, you know. Oh, and ALS too.


  1. Me too first thing in the morning and last at night I think about you my dear and your dreadful journey. I am sad at the terrible problems with your wife. She will have to work eventually won't she. I could never get away with not working and did so until I was 65 but you will have to cease working soon. My heart bleeds for you even if you don't want to upset me. I need to be upset. What kind of a mother would I be if your situation didn't upset me. I have that right.
    Love you

  2. A ticket! Shortly after you and I came back from New Orleans, the City that Care Forgot sent me a speeding ticket in the mail. They had taken it during our city tour using a camera! Seems sneaky to me. This is obviously an international problem.

  3. It's simply an unfair tax on those of us who want to get somewhere more quickly than others. I say unfair because, if you look at it, we are being penalized for trying to get off the road sooner. We are being punished for trying to remove our vehicle from traffic, for trying to ease congestion on the roads. Why fine us for seeking to make the roads less crowded with pokey, slow drivers?