Getting Into My Truck

I've often said that ALS is a sneaky, insidious disease, creepingly slow enough that the tiny, incremental changes it brings are almost unnoticed until something significant happens. It was that way for me, with the ever increasing weakness in my legs, even while I could still walk, finally getting to me, forcing me into a wheelchair two years ago. That incremental loss in my legs continued until most of my leg muscles were completely dead. There are still a couple of working muscles; they two are still subject to the creeping incrementalism of ALS.

There are the big losses, the ones you can see. Then there are the little, daily losses which you can only see if you are really paying attention, and even then only at key increments, at highlighted crossover points where a final, small loss has that big impact. Getting in and out of my truck is kind of like this.

A couple of years ago, when I first had the lift system put in my truck, in noted that the lift itself was a couple of inches higher than my wheelchair seat. No matter, I said to myself, I can still lift myself in, pivoting myself up and over to the seat. That, of course, was only true for that instant. Immediately after that moment, creeping incrementalism took over. My losses were not immediately visible; they happened slowly.

In some ways I thought I had little to worry about. My prognosis was such that I expected to lose the ability to drive in about a year. Now, two years late, I am still driving, long distances at that. What the incrementalism of ALS has done, however, is make in increasingly difficult to transfer from my chair to the lift seat. In the beginning, it was a simple lift and pivot. These days the pivot is gone completely and it's the lift that counts. Getting in and out of the truck can be very difficult where the lift is at an angle or when my wheelchair is not completely lined up.

Now, when getting into the truck, I get as close as I can to the lift seat, lifting myself such that one ass cheek gets to the lift. Then I pull myself further onto the seat using the truck seat and steering wheel as pull points. Since I use the truck daily, I've saw this coming a long way off; it's been one cheek on for a while now, making that precarious pull once that cheek is positioned.

Today I parked in the handicapped spot at a local grocery store. I got out of the truck with no issues. It was when I returned to the truck that I noticed the parking spot was lower in the middle than it was in the front and back. This meant my lift was now about 3 inches instead of the normal 2 inches. One inch might not seem like much, but when it's at my lift point it can mean getting in the truck or not getting in the truck.

It took me a couple of tries to get enough lift so that the edge of my right ass cheek was precariously perched on the outer edge of the lift seat. I threw my hands into position for the pull, having failed at the first attempt. On this second attempt I managed to get enough purchase to drag my sorry ass into the lift seat, exhaustedly getting into place so that I could get up into the truck.

One inch; that's all it took. Were it another half inch I probably would not have made it at all. That is the incrementalism of ALS at work.