A New Increment

It is the creeping incrementalism of this disease that makes it so frustrating, so difficult, so defeating. It is the daily recognition of the small changes, the invisible changes that others do not see until the aggregate is sufficient to become clear or when the time between meetings is sufficient for the changes to be visible. This is the real challenge of ALS, that it moves at once too slowly and too quickly, where it's progression is sufficiently small in steps that it seems to take a long time, yet it's overall progression leaves such a short time to live.

Today I had trouble standing again. It wasn't a big thing; I got it on the third try. It's not the first time that getting vertical has taken three tries; this happens often. What I noticed today was the effort needed to get to that third try; it's becoming noticeably more difficult for me. Yet others will not see it; I stand so rarely that when they see it, it looks amazing, like a miracle. It is something I try to do at least once a day, sometimes two or even three times. It is something that is getting more and more tiring, more and more difficult, more and more unlikely.

After getting dressed, I went into my kitchen, looked at all the dishes stacked up and finally set myself to unloading and reloading the dishwasher. This is another task which has incrementally increased in difficulty for me. It takes longer than it did a few months ago; it is more tiring than it was a few months ago; it seems less important than it did a few months ago. I now leave it until there is plenty to load; the dishwasher is rapidly becoming one of my dish storage locations. When Rosa comes, she unloads it, loads it, and puts the dishes away, meaning that at least once a week I have a clean kitchen and an empty dishwasher.

Putting away laundry is another difficult and tiring task. I yet do my own laundry, something that I find rewarding. The process of taking a pile of fresh laundered clothing, warm from the dryer, and folding it neatly is comforting to me. Once folded, I place it neatly in my laundry basket and take the basket into my bedroom. Yet the process of moving it from the laundry basket to the drawers requires a whole new charge of my batteries; I often leave it for a day, sometimes two. There have been whole weeks where I have lived out of that laundry basket, never bothering to put things away. It just seems like a lot of effort when I have so little energy to use.

There are other things that are becoming incrementally more difficult, slowly more challenging, things like transferring from my wheelchair to the toilet or to another chair. I have pretty much completely given up on the Phoang chair, my favourite chair. The transfer is just too hard, too tiring. I no longer sit in other chairs except on those rare occasions when I feel up to it, excited about sitting in a real chair, not a wheelchair.

All in all, it is the creeping incrementalism that defines this illness, at least for me. I know others with ALS where there was no creeping; it was a gallop from diagnosis to death. Perhaps even here I should be grateful, happy that my version of this disease is slower than some. Perhaps I should take joy in what I can do, not dwelling on what I can't do. The problem is that it is something new every day; each morning brings a new increment.