Tuesday, 30 August 2016

Focus On Living

I you want to be depressed, read this. I have, over time, made it a goal of mine to read as little clinical literature about ALS as possible. In many ways it is like going down a rabbit hole. I will admit that when I was first diagnosed, and for some time after, I wanted to know everything there was to know about this disease. Then, after a while, I realized that knowing all of this would do nothing for my life. Now that I have ALS, I have to learn to live as well as I can with this disease, rather than any of that clinical stuff.

Living with ALS can be very difficult some days. Not all days, but some days. Yesterday was the kind of day where living with ALS not only didn't feel bad, but it felt kind of good in an odd way. Yesterday I had Home Care. She cleaned my apartment, made my bed, took out my garbage, and I didn't have to pay. How many others would like someone to come in every Monday and do that for them, as a part of their regular health care, covered by government medical? Since I have lived in this apartment, almost four years now, I have taken the garbage out perhaps twice. That's it.

Yesterday I transferred into my PWC to go to the train station. I rolled along in the clear summer air, warm breeze pushing past me, moving with no more effort than a push at my wrist. Right turn, twist a bit. Left turn, twist a bit. I know so many people for whom a walk of this length would leave them in great pain. I know people whose work and life have left their bodies almost unworkable. Certainly mine is too, yet here I am, happily rolling along with the wind in what remains of my hair.

When I got to trivia, after sitting at the table for a bit, my feet started to hurt. They do that almost constantly, usually after being in one position for a while. So I used the lay-back function of my PWC to give my feet a lift, to re-position my body to the point where I could almost take a nap. I have, as a part of my daily life, a mobile reclining chair!

One my way home I rolled along Calgary's Riverside Trail. It's amazingly beautiful to see the water rush by, glinting and reflecting the lights of the city; the sound of bushes rustling as the river moved them aside, ever pressing in its desire to reach the sea, at some unseen river mouth far off in Hudson's Bay. I know there are fish in that water; I can't see them but I know they are there. Other people are making this walk with me, even though it is 10:30 PM at night. They feel safe here, and so do I.

Even though it was well after 11:00 PM when I got off the train at Brentwood station, I felt no fear in making the 3 kilometer roll in my PWC. I live in a safe city where most of the sidewalks have wheelchair ramps. It's not perfect, but it is liveable. When I got home to my warm, safe apartment, there was food and drink in the fridge, clean sheets on my bed, air conditioning should the evening become to warm, and Internet, that miracle of the modern era, allowing me to remain connected to all those in my life where distance keeps us apart.

ALS is a terrible disease. I know far more about it that anyone should know. I deal with its devastation every day. I don't want to read about it. I don't want to learn about anything except possible treatments or a cure. I also don't want to let it be the only thing in my life. Living with ALS is not easy, but thanks to so many and so much, I live a pretty decent life. That's what I want to focus on.


  1. This is my favorite post. Earth and clean sheets. Safety.

  2. Clean sheets, a safe city, and food in the fridge. You rock!