Changes Will Come

ALS is a disease of creeping incrementalism. In most cases you don't see the changes suddenly. Instead they slowly overtake you until one day you realize there has been a change, often not a big change, just enough of a change to make you realize that things are progression. There are events, things you do periodically until one day you notice that it's a lot tougher than it was even a few weeks back. Then there are the moments where you are thinking about the future and realize you probably won't be there to see it.

I had a three of these moments yesterday; two where I saw the change in real terms, where the loss of strength in my arms became suddenly real, and one where I thought about something for the future, realizing that I would not be there. By the end of the day, I was quietly depressed, saddened by both of these realizations.

The first was in the afternoon when I had to go to the Home Depot for some screws and a special drill bit for drilling through tile. Although I have been noticing it get more difficult, I can still get into my truck and driving is still easy, or at least relatively easy. I drove down to Home Depot, got out of the truck and headed into the store. As I did, I hit the ramp to the front door and slowed down substantially. I thought to myself "This didn't used to be so hard", and then realized that it really didn't. In the last three months that ramp has gone from being merely troublesome to steep and difficult. I know they didn't change the ramp, so there is only one other conclusion I can reach.

The next was when I went to the movies with some friends in the evening. I, once again, got into my truck and drove to my destination, Chinook Mall. The theatres are at one end of the mall; my friends wanted to meet in the food court, up on the second level at the center of the mall. I got out of the truck and thought about the distance. For the first time since the onset of this disease I found myself wishing I had my power wheelchair. The distance down that mall, something that was easily accomplished just six months ago, seemed interminable, the mere thought of the effort wore into me. The fact of it was equally wearing. I did it, pushing myself to get there and be a part of things, yet inside I was feeling the pain and weariness of nerve exhaustion.

That same movie provided the third event of the day. I was watching Captain America: The Winter Soldier, a special effects, explosion riddled extravaganza, in 3-D. The movie was fun, fast moving, with a few really good lines in it. I enjoyed myself. If you know anything about the Marvel Studios approach to these movies, they always put a "bonus scene" at the end, previewing their next planned movie. In this case I loved the preview scene and thought to myself, "I would like to see that". Then I realized I would probably not live long enough.

These kinds of things get to me. They wear me down, stripping out my enthusiasm for living. The realization that progression is real and ALS is terminal; this makes for a difficult moment. The best I can do is leave those moments behind me, live in the present, and accept that changes will come. That's my mission for today.