Daily Archives: April 11, 2007

Things I haven’t done.

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There’s a number of things I haven’t done.

Many people have written asking for copies of my “In My Language” video. I don’t know how to even begin to do that.

One person I’m privately corresponding with at the moment would probably like me to hurry up with my explanations of which things CNN got right and which things they got wrong. I don’t know when that’ll take place, but I’m working on a specific part of it, more to do with the reactions I get where people assume I share certain attributes with their children that I don’t.

One person sent me a release form and wants me to sign it and send it as soon as possible. It took me several days to print it out (not as weird as it sounds, I have to boot to Windows to print at the moment so that’s an extra step). I have told my staff to absolutely somehow force me to sign and send it tomorrow morning.

CNN themselves probably want a response from me soon. I’m working on it.

There are a number of topics that I have meant to write about that I can’t actually remember at the moment.

In the meantime, there is some stuff I would like to say. When I say this stuff, I’m not looking for emotional responses, I’m just trying to give a broader picture of my life.

I am not just autistic. I also have a number of other things going on, which I’ll just give the medicalistic labels for here. I have migraines severe and constant enough that in themselves they’d be considered severely disabling. I have wrist tendonitis (and I type to communicate, so that’s more a big deal than it sounds), a jaw that wants to dislocate and causes pain, and some sort of undefined knee problem (the right one pops out of place a lot and hurts when it does that), as well as general joint pain (all of which may or may not be associated with hypermobility syndrome, which I was told I have a few weeks ago). I have some kind of neuropathic or central pain. I have stamina problems (currently classified as chronic fatigue syndrome, but possibly associated with some of the other stuff I have going on). I have asthma. I probably have undiagnosed Tourette’s and OCD (I have tics, obsessions and compulsions, but I’ve never had it diagnosed as anything). I have stomach and bowel problems. I have PTSD. I have movement stuff that has been classified as catatonia. I have complex-partial seizures, although they’re really well controlled and only happen a couple times a year by now. I probably have brain damage from neuroleptics making the movement stuff more obvious. And a partridge in a pear tree. (A lot of these are lifelong or close to it, not recent.)

I’m not all that fond of the medical labeling system that seems to chop me up into little bits, when I feel like I’m only one person, and certainly not a collection of labels like that, it’s weird to see them all written out. I’ve probably even forgotten some because I think about them as individual parts that little. I’m not fond of the sort of boxes that people seem to assume come with the labels and try to squeeze us into. But those are, in medicalistic terms, the assorted things going on with my body.

I also have a life outside of the Internet. I have a human friend as well as a dog and a cat. I have things I’m supposed to be writing and doing. I have staff who require interaction with. I have the various daily activities that take a lot more “spoons” out of me than they would out of most people. I have a weekly class I take. I take my dog to the park. I have meetings I am supposed to attend and be capable of responding to and understanding speech. I have assorted short-term urgent things. I have a friend who sometimes requires assistance with things when her staff aren’t there (aside from the time we just hang out together). I have a family to keep in touch with. I have various long-term projects. I have a certain amount of necessary “downtime” where I am not processing things like language-for-meaning and so forth (if I don’t take that downtime voluntarily, it will happen involuntarily while I’m trying to do everything else, and even so it often does). I make videos. And all of this, both the parts that are traditionally “work” and the parts that are traditionally “recreation”, take a large amount out of me to the point where I am rarely getting all of them done.

All this to say a couple things:

Don’t assume something you see me do (or not do) is because I’m autistic, just because you know that I’m autistic. The reason that I have to move from foot to foot when I stand, for instance, is because my lower legs hurt a lot if I stand on them too long so I have to stay in constant motion when I’m standing if I don’t want to deal with pain. I doubt that’s because I’m autistic. I was just explaining that to a friend I’ve known over half my life (after we went somewhere while I walked and she saw this), and she was a little surprised.

Also: There’s a reason I’m not employed. There’s a reason I get so much assistance with things. There’s a reason that I don’t get to every single thing I’m supposed to do on any given day. I work really hard to do the things I do. I sit at my computer and type things with migraines that would send most people to bed, and I don’t mention those migraines unless they get much worse than usual (and usual is already pretty bad). Every day there are many things I both need and want to do and can’t get to. Much of the time I can’t even do the recreational activities I enjoy — those take a backseat to other things (plus I am, as described by my friends, almost outright puritanical at times about recreation and other “frivolities”, at least when it comes to myself).

I do not want the usual emotional reactions that come with litanies like this. But I would like a tiny bit of leeway about not getting to every single possible thing I could be doing, and the fact that even though I might be a good writer, I can’t just spit out words on demand on every conceivable subject. Not on my demand or anyone else’s.

Many of the things that are not writing, I’ll give an example today. I was writing a long letter to someone I know online, about my long and illustrious history of having a facade of “crazy” instead of a facade of “normal” when I was younger (which I suspect happens to a lot of us who can’t manage the facade of “normal”). So that was writing. Meanwhile I had a staff person coming up to me and asking me a lot of questions, which makes sense because she was new. I was hanging on to the writing by a thread already. In the background, all meaning was falling away from everything, including her words. I could only seem to gesture half the time by moving my arms up and down and hitting my legs. I was seeing more patterns of light and stuff than anything she meant to see, although she did keep trying to give me visual examples of what she was asking (since I could barely understand a word she was saying), which didn’t always work either because visual comprehension was on the fritz. I couldn’t read the letter I was writing to the online friend either, and I was getting strained with the generating of language and memory to write the letter in the first place. If I’d been a tiny bit more stressed out or nervous about the person I was writing to, I wouldn’t have been able to write an accurate letter at all, possibly any letter.

So basically I could write — barely — but everything else was going out the window to do it. I spent much of the time after the staff person left and I’d finished the letter, running around the house ticcing up a storm (I am glad my apartment complex has thick walls). I’m really overloaded tonight. I also have a wisdom tooth problem that was causing enough pain yesterday that I got my first experience of actually vomiting from pain (outside of migraines, where I’m not sure whether the vomiting is tied to the pain or not).

So… I really wish I could tell people a time to expect things from me that they’ve been needing or wanting or expecting. I don’t have it. Whenever I give someone a time frame, it’s very likely I won’t meet it. But I’m trying. And please keep all that in mind when wondering why I haven’t done something yet, or said something yet, even if it sounds really simple. Today I couldn’t do the “really simple” task (for someone with technically perfect hearing and sight anyway) of understanding what someone was saying or choosing which of two plates to have dinner on. This is very everyday for me, and thus not something I feel horrible or awed about or want others to feel horrible or awed about. I’d just like people to understand a bit of what goes on besides writing on the Internet and answering questions or requests from people on the Internet, and also a bit of the extended list of medicalized jargon used to describe my body, so that they don’t assume motives that aren’t there (or lack of caring) when things don’t get done.

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