2:29am December 3, 2011

I can’t read these damned articles.

I’ve finally tracked down copies of articles from a single issue of a medical journal, devoted entirely to the movement disorder called ‘autistic catatonia’. I have printed them out. I need to go over them in order to get them ready to give to my doctor.

So far I can’t bring myself to read them.

I think about it and the thought scares me so much that I just mentally turn away and do something else.

I don’t know if it’s because I know these are outsiders (at least one of them a complete asshat pushing a therapy that resulted in one person I know with this movement disorder losing all memory of her previous life and having to relearn everything from language on up from scratch after she was rescued – but that’s obviously not the issue in the articles that person didn’t write) commenting on a phenomenon that defines aspects of my life so deeply I literally can’t imagine it not being there.

I don’t know.

I used to wish that there was more literature on the subject. There was barely anything, most of it utterly crappy. I remember having to tell medical professionals who were unfamiliar with the subject, “There’s literally three articles in existence on what I have. Do you want copies?”

Now it’s here and I can’t force myself to read it.

I know I will, eventually.

But right now I’m (irrationally?) too scared to even attempt it.

And I don’t get why I can’t.

I still remember getting diagnosed with it. I’d been at an autism conference. Someone saw me freezing in strange positions, over and over again, throughout the thing. She told me, “There’s this movement disorder. I have it. I know a couple other people who have it. We can get you articles on it, but there’s not much.”

I was 20 when I finally got my hands on an article and had my mom fax it to my shrink. He’d known me since the age of 14 and watched me gradually losing the ability to speak and control my body in certain ways. His response was basically “So this is what’s been happening.” With the help of him and my regular doctor I got my first (manual) wheelchair, allowing me to use fewer muscles to move around. They both offered a motorized one (and so did the woman evaluating me) but I didn’t take it because I wanted to be able to exercise.

I remember when this stuff all started. Not really, actually – like a lot of of autistic people, I’ve always had some level of obvious movement problems. Not so much coordination, as the ability to carry out complex, non-triggered, non-automatic movements easily and quickly. But when I was about 12 my brain just… it felt like it imploded or something. By the age of 13 I was being seen by neurologists and by 14 I was diagnosed with autism and “central nervous system disorder not otherwise specified” (accounting for the losses that were already showing up, among other things). But I didn’t really understand any of this and the years that followed were utter hell.

Like… I really thought that somehow I had some kind of unnameable and deep problem, and the fact that I couldn’t name it meant that as far as I was concerned that was the absolute worst possibility. So was any future that involved inability to get rid of this. And I knew, long before anyone else knew, that I would never get rid of this and that I was losing rather than gaining.

In my eagerness to be a 'good patient’, every time I got any kind of therapy or medication I would force myself to act like it was helping me, whether it was or not. Then I’d inevitably crash and everyone would be puzzled as to why this happened when I was “doing so well”. Eventually I stopped pretending that everything was getting better, but I was so afraid of the inability to name it that I allowed myself to act out the part, in public and in private, of whatever condition they were blaming it on that week. I thought that would help make it nameable. It just helped confuse everyone.

But inside I had what I thought was a horrible secret. Would not have been able to communicate it to anyone if I’d tried, just like almost all of my inner thoughts at the time. And this horrible secret was “Things are getting worse and there’s no name for what I have.”

I cried when I could name what was happening, due to the three papers that existed by the time I had the ability to research them.

I now don’t consider it even as horrible as other people consider it. Yes, it’s progressive, and people with progressive conditions supposedly hate them, but what I have for it isn’t hate. It’s more like an acknowledgement of something that’s burned into my body so deeply I don’t know what it would be like without it. Something of this has always been here and it’s not uniformly a terrible thing. Especially now that I have more understanding of what it is.

But then, I’m a very strange person. At least according to most nondisabled people. I doubt I’m that strange for a disabled person. I’m one of those people who even for my most unpleasant conditions I don’t have the level of hate or misery most people would expect me to have. Sometimes I do, but usually I don’t. I have what I consider a good life. (A life that already most people would assume is horrible.) My only fears for my future are fears of what other people will do to me, or fail to do to me when they needed to do something. Apparently this is weird for a person with progressive conditions and a higher than average likelihood of things like dementia in the future, things that scare the crap out of most people and even cause people to want to kill themselves. But I really – seriously – am not usually afraid of what my body will do, only whether other people will allow me and enable me to live the life I want to live. (Or live at all – regardless of the fact that all of my advance directives boil down to “keep me alive at all costs”.)

I also cried when I found out there were more articles on this condition.

And now I have these articles in a stack of papers under my bed and I can’t read them.

I need to read them. So I can highlight and write notes and stuff for my doctor, to the relevant parts. The tiny bits I caught as I was printing them out didn’t look scary.

And I still can’t read them.

I don’t get it.

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