Thursday, 28 November 2013

I Wonder

I am regularly touched by the compassion and care shown, not just to me but to many, by PALS in far worse shape than me. At the same time I hear from a great many of them, how their struggle with this awful disease has left them bereft, aimless, wandering in their lives. I hear from them about their joys and pleasures, and I hear of their pain and struggle. Then I wonder why. I don't wonder why they got ALS; nobody knows why we get ALS. I wonder why about a great many other things, but mostly I wonder why they keep going, keep fighting, keep struggling to live a life against these terrible odds and with this horrible affliction.

Where does this will to live come from? This morning I awoke thinking about my own future, about what will happen with Ricky moves out and returns to Vancouver, something he must do eventually; about what will happen when I can no longer hold anything in my left hand and eventually my right hand; about what will happen when I no longer have the money to pay for my truck or apartment; about what will happen when I can't even get out of bed.

Then I got a message from a fellow PALS, a man who has no meaningful movement, a man who is stuck in bed most of the time. He too was wondering why we work so hard to keep going.

The counselling psychologist tells me to focus on today, to focus on living in the moment. When I ask about rent and car and food, he rightly points out that these things happen whether or not I have ALS. The difference is that with ALS I am no longer working, no longer producing wealth but instead consuming it. He points out that my financial situation is good for another year or two, and who knows what might happen in that time. Well, based on all the data and information available, I know what will happen. My condition will deteriorate. I will become more and more physically infirm. I will lose everything and be left a shell. That's what will happen.

Yet today I got out of bed. Today I got dressed. And when my online friend reached out to me I said to him that if I was there we would sit on the couch together, drink a beer, and watch football. He's going to do that today, with family and friends all round him. When I get that far, I wonder where my children will be? I wonder who will be with me? I wonder how I will spend that day?


  1. Oh sweetheart I am so sorry .
    Love that does not help much.

  2. Again,so many questions, so few answers.I get that. We can become consumed with the whys,hows and whens of this life.Some days I feel like a big tidal wave of questions sucks me out to sea,and no matter how hard I swim against it the further I get sucked. My prayer for you is that there will always be someone there with you, except for the times you want to be alone,but you would know that they are right there behind the door waiting for your call..

    1. The "logical" part of me knows that I will have help of some sort. The emotional part of me lives with the fear that it will be in a care home, alone.