I’ve been what I call a total dependant for about four years. I’ll never allow myself to get used to it. I am, however, getting used to the way people react to it. For instance, there was a time when a family member could make me feel miserable just by saying a silly little thing like “I want you to know that you really ruined my day,” after finding out at the last minute that he had to fill in for my aide. I’ve reached the point where that kind of thing has almost no effect on me. Besides, it’s not like he was planning to take three nympho super-models out on his yacht. People say all kinds of wacky things in the heat of frustration, and I’m not about to start apologizing for having ALS.

It’s a special person who chooses a career in the service of others. And it’s indeed commendable for family members to fill in for these people when necessary. But when the shift is over, the aide goes home. And if for some reason – emotional, obligatory, or recreational – a family member doesn’t want to help, he or she can always say no. The patient (the aforementioned burden) does not have the luxury of a respite from his/her (my) ailment.   

Everybody needs people. It’s no secret that we depend on each other for everything from a mother wiping her child’s runny nose, to a father depending on his son to carry on his bloodline. I find myself faced with the unique challenge of trying to make some kind of positive impact on the world and maintaining some modicum of dignity, while being almost totally dependent on everyone around me for almost everything. It’s been quite a while since I’ve felt like anyone depended on me for anything.

Of all the frustrations I face, there’s none so demeaning as having to be so damned dependent on people. And, there’s nothing so heartwarming as having them to depend on.

Alex Cathcart lives in Queens, New York.  He was diagnosed with ALS September 2002.  After losing the ability to play music, he started writing essays, short stories, and poetry.  He is also working on a memoir.