Monday, 11 February 2013

Legless in Calgary

There has been another change. This one has been coming for a while. I have felt it creeping up on me, stealthily clawing bits and pieces of me, weakening me little by little. For the last few weeks I have noticed increasing difficulty getting from my apartment and into my truck. It wasn't harder on any particular day and some days were better than others. Little by little, however, it was getting more difficult.

Yesterday that difficulty jumped out at me with a surprise. I can walk to my truck using my cane. When I got there on Sunday morning, I couldn't lift my right leg on to the running board to hoist myself in. The challenge was not a failure in my right leg but the failure of my left leg to hold in place even though my knee was locked. It happened on Saturday too; at that time my knee buckled but my death grip on the steering wheel stopped me from falling. Sunday was a different story. I knew it would fail.

I managed to struggle into the truck with some extra effort and a once again firm grip on the steering wheel as a lifting source. Once in I was exhausted and had to sit for a few moments to recover. Later in the day I was completely unable to get my right leg up onto the running board. One of my friends had to come and lift up my leg so I could do the rest.

This loss of stability reflects the growing paralysis in my leg muscles. Most people think of paralysis as having your muscles freeze, not being able to move them. Well in fact that is my very problem. My muscles aren't frozen in place; I just cannot move them anymore. I can't trust them. They don't work. They fail me. This is what will ultimately happen to all of my voluntary muscles.

This change means I must change my truck to keep it, and I do want to keep it. In order to continue using my truck I will need to add a lift-and-swivel seat, hand controls and a wheelchair lift. This will likely cost in the order of $7,000 - $10,000. As the manual says, ALS is an expensive disease. I am not sure where I will get the money from but I will make this happen somehow.

You might ask why I keep this truck. Why not get something else? Why not get a van or something that is easier to get into? There are a couple of things in play with this. First of all, getting in is only half the equation. You have to get out too. A lower vehicle that is easy to get into is a tougher vehicle to get out of. The balance would be a vehicle about three inches lower than my truck, or a way to get me three inches higher. Regardless of all that, at some point I will need mechanical assistance to get in and out of a vehicle.

Then there is the problem of the seat inset. Vehicle seats are set in. To get into a car seat, I must fall backwards into the seat. Even a seat at the correct height for easy in and out requires that I fall back into it. This means I need another SUV or something like that, an equally costly vehicle. Or I need to give up now and get a van with a wheelchair ramp and forget about driving. In other words I must give up my independence.

The other problem is that losing my truck is another loss in my life. I like my truck. It is the truck I have always wanted. I ordered it with all the stuff I want, the way I want. I would like to keep it as long as I can. I am losing enough already; I want to do all I can to keep my truck. It is my freedom, my mobility, my escape.

So I am not spending money on a truck. I am spending it on living my life as fully and completely as possible. I am spending to save my life, or what there is left of it.


  1. I just got my first estimate back from an installer for the chair, lift and controls. It's $15,000. Ouch!

  2. Sounds like money you have to spend!