Marissa Lingen (mrissa) wrote,
Marissa Lingen

more damn vertigo

Okay, let's try something. Indulge me a minute.

Look up.

How long did it take you to decide which direction "up" was? Did you, in fact, think through the possible directions and make a decision? Or did you just...y'know...look up?

That is one of the things -- one, not the whole -- that happens with my PT exercises. If I am standing in the corner doing head movement exercises with my eyes closed, less than halfway through the set of exercises, I lose track of which way is up and which way is down. I have to consciously think, "up is away from your shoulder; move your chin away from your shoulder." Every time. For at least forty repetitions. Three times a day. Every day. The sensory disorientation does not go away when I open my eyes; then I have the visual cues in addition to the proprioceptive ones. But what I do not have is the one that you, unless you also have vestibular problems, just used automatically. I don't have the essential sense that up is up and down is down.

In my family, "she was so tired she didn't know which end was up," is an expression often applied to toddlers, sometimes to bigger people than that. It works the other way: not knowing which end is up is exhausting. And it is very, very literal. I know which end is up right now because my monitor and my computer have strong black vertical lines, and I am looking at them. My desk chair is currently locked so that it can't tip back, because if it could tip back, I would not have a sense of when it had. I can have the "I have leaned back too far and am flailing to keep from falling" reaction when a normal person would have it; I can have it at a few degrees off vertical; I can have it when I have not moved. It comes upon me at unpredictable intervals, and I have to correct for it every time, or fall.

It has been this way for months. They tell me it will be this way for months more. And one of the very hard things about it is that there are things I can't talk about without giving a misleading impression of whether it was a good or a bad experience. If, instead of point three in the previous entry, I'd written about how exhausting and frustrating it was to navigate MIA trading off which family member had my arm, it would have sounded like I'd had a bad afternoon. I didn't. I was with markgritter and my folks, and we looked at flower arrangements and more permanent kinds of art, and it was good. But writing about the reality of the vertiginous aspect of it would make it sound like it was bad, like I'd had a horrible time. I didn't. MIA patrons were no more inconsiderate, no more physically rude, than strangers anywhere else. And that's the problem: that even the good days, even the good times, are really exhausting and a lot of trouble. They are worth the trouble. They are worth the exhaustion. I feel it's generally a good idea to work for the good things in your life, even when the good things are smaller and the work is harder. But what frustrates me is that I seem to have a choice between describing the hairy, frankly awful details, and having them swamp the idea that it was a good time, or else not describing them, and having people assume that they're going away, that I must be feeling better or I wouldn't be out and about. I'm not. I'm just going completely stir-crazy.

Every week of PT, I think, "All right, this is the hardest bit." I think I'm going to keep thinking that until it's over. Because I think it's going to keep being true.
Tags: stupid vertigo

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