However, as I’ve gotten older I have less and less to say about myself. Don’t mistake that for an increase in humility. I just can’t do as much now.
When I was in college, I would have described myself this way: “I’m studying creative writing and Latin. I’m a cashier and I take classes where my teachers and classmates insult me so I can volunteer with disabled kids. I write fiction and pop music, and I also make little art projects, like I take pictures of myself pretending to be a ghost leaving my body. And I write a blog about disability issues.”
Now it’s more like: “I work as an aide for a fantastic person. Occasionally I write in my blog and every few months I work on music a little bit.”
My phrasing has misled at least one friend into thinking that working for Anna is very difficult and this is why I don’t do anything else. I don’t think working for Anna is hard and it’s easier, better for me, and more meaningful than most things I was required to do when I was in college. But my life was much more physically circumscribed when I was in college and a lot of things were provided for me. I was already having trouble with daily living things when I was in college, but there were a lot less of them.
The amount of work that goes into getting ready in the morning, traveling to and from my job, getting ready for bed, and trying to eat and shower an appropriate amount takes up at least as much of my cognitive ability as my job does. I also can’t let myself space out at work because it would affect someone, which wasn’t really the case with my college classes. I’m glad that I spend my days somewhere where my presence actually matters--one of the things that made me so angry and depressed in college was that I was required to exhaust myself doing things that didn’t immediately benefit anyone. But having to be alert means that my job drains me of energy much faster than my classes did.
If I don’t have to be at work and I’m not trying to deal with eating or hygiene, I’m trying to force myself to focus on getting stuff done around the house so I won’t make life harder for my roommates by not doing my chores (which are already disproportionately tiny compared to theirs). If I’m not trying to force myself to do that stuff, I definitely don’t have it in me to do anything but lie down and watch or read something in pieces with spacing breaks. If a friend asks me to hang out, that’s usually good because I can let them do the focusing and make the decisions. I can enjoy what we’re doing. But when it comes to stuff where I have to focus--like writing or working on music--it never seems as important as lying down and trying to forget how much I hate moving and thinking.
I can tweak this to sound better or worse, right? Oh the existential anguish of having to drag myself to the shower every four days. I don’t need to be an PCA/writer/musician like I expected to be when I was younger. I do some stuff I like and I feel like my job is meaningful and I do think that’s the most important thing. Sometimes I still get upset because I feel like it’s unfair that I don’t feel better or get to worry about things less or do more of the stuff I’d like to do.
I came across the blog Dealing with Dysautonomia, which is really good. Maddy writes about how she became sick when she was 14, and how she struggled with her identity when she couldn’t do the activities she used to identify herself with. I don’t know Maddy and don't want to quote her without asking, so here is the post I'm talking about.
Sometimes I sit down and try to make plans for organizing my life in a way that would magically enable me to write and play music. I really hope I figure it out, but the answer might be that there’s no figuring around not being able to do as much as I expected.
The point is I may have to just tell you my favorite color of lipstick is Violet Frenzy and leave it at that.
I’m Autistic. I am 25 and live in San Francisco, in the United States. Here’s the blog directory which is not up to date--the reason I made it was because I used to write about a lot of non-disability-related things on the blog and I wanted the disability things to be easier to find. Here’s me and Jonathan Wilson being really cool.
(A young white woman, with a stuffed elephant on her shoulder, is wearing a shirt that says “?$#@&*!! YEAH MAN!")