Living Without ALS

I had a dream last night, one of those tremendously lucid dreams, a dream where I wasn't certain if I was asleep or awake. But it had to be a dream. I dreamt that my fall out of my wheelchair on Sunday night had done something to my brain, or my spine, or my muscles. I dreamt that I was stronger, that I was getting better. I even tried a movement to test my left arm strength, one of my exercises. Sure enough, I could do it without help. Sure enough, I was stronger.

That exercise remains untested. I'll be doing it soon enough, tomorrow when Home Care comes. It's not the exercise which matters, it's the dream. Deep inside of me, despite my intellectual knowledge to the better, I still dream that I might get better one day, that I might recover from ALS. I still hope for a cure that returns me once again to strength and ability.

The other day at the ALS Clinic, the neurologist pronounced that I was essentially unchanged since last year, or that any changes were minor. He then signed off on my driver's license and said he didn't want to see me for another six months; things were moving that slowly. When I got the license, it was issued for four years, not the one year that I got last year. When my brother Adam and I were talking last night, he said he thought I could easily be here for another four years. He noted my slow progression, the typical survival times for people with the Progressive Muscular Atrophy kind of ALS, the kind I have, and my general state of health and well being right now.

Maybe I could. Maybe I could live for another four years, or even more. The question is not if I will live, but how I will live. If my symptoms stay as they are, if progression halts completely, would I want to live the rest of my life like this? Probably. If I have slow progression, when will it get to the point where it just becomes too much? I don't know. And when will the quality of my life, my ability to do things, to enjoy things, or even to pay for things, reach a point where I've just had enough? Again, I don't know.

All I know for sure is that somewhere inside me there is a dream, a dream of a life without ALS, a dream of a return to normalcy. All I know for sure is that I don't want to get worse, nor do I really want to stay like this. I want to get better. I want to live without ALS.