Staying Home

I've been noticing for a while a change in me, a slow steady change which has nothing to do with losses in my body, but everything to do with ALS. I am becoming less and less of a social animal. It used to be that I was busy all the time, going here and going there, doing this and doing that. Now, given the choice between going out to some social activity or staying home to watch Season 2 of Daredevil on Netflix, the television wins.

It's not that I don't want to be with people. I am as I ever was in this regard, a person who comes to life in the company of others. It has to do with my tiredness and my willingness to expend energy. If I look at what it takes to get out, to go out; if I look at the work effort of putting on shoes, transferring to the truck, driving; if I look at what it costs to do some of these social activities; I end up deciding to stay at home.

I'm sad to say that, for so many things, the work effort is not worth the social outcome. As I recede further and further into ALS, I find I am also receding from view socially, particularly when it comes to how people respond to seeing me in the wheelchair. With my friends of long standing, they can remember, most of them, what I was like before the disease, before the chair, before the weakness. Many people in many of these social settings have no idea of who and what I once was. All they see is the crippled guy in the wheelchair.

So today, while I sit here at home alone, looking out my window at the sun, I will stay indoors. Today, I will look at the comic book lives on a TV show, rather than go out and participate in the real life which surrounds me. Today, even with a full afternoon and evening where Katherine is not with me, I will transfer from my wheelchair to my couch, and stay there, transferring back only to get dinner, and perhaps a bottle of wine.

I hate this part of ALS, but it is to be expected. Eventually I will run out of energy completely. For now, it's just getting hard to get out and have fun.