Life in Fibro Motion

21Aug08

It’s one of those days where a cane doesn’t feel like enough; one of those days where, despite all the medical insistence that fibromyalgia is not a progressive disease, I sense a wheelchair in my future. It’s also one of those days where my tendency toward solipsism bites me in the ass, since my serotonin is so low I can’t even be sure my own thoughts are “real.”

In other words, this post may be completely full of it.

That said, the way I move today fascinates me. It’s not just the pain. I’m used to the pain; the pain is an old roommate, and I long ago chose “in pain and brain-functional” over “comfortable and drugged-stupid.” There’s pain, today, a lot of it. But there’s also a complete detachment between my motor coordination and the outside world. My body literally does not know what in its environment is horizontal, vertical, solid, or “real.” (You see why I nurture solipsism.) So I stumble around like a bloody drunk. I can’t find the wall until I run into it – and sometimes not even then. I have to concentrate twice as hard to move half as much. Walking down the hallway with a cup of coffee? Fuggedaboudit. It’s days like this that all the sports I enjoy become spectator-only, and even my usual walk to work becomes a fantasy.

Yet, for all that, I’d rather live like this every day of my life than suffer the brainfog and fatigue that are my roommate’s other trademarks. Partly, and it’s a big partly, it’s because my brain still works even if my body doesn’t: I can think, and that matters, not only to my career but also my sense of self.

But the other half is that, in this state, other people can actually see the disability. They can see I’m not whiny or hypochondriacal, that I’m not merely nursing a diagnosis given to middle-aged women to shut them up, that I’m not exaggerating when I talk about having suffered to various degrees for my entire life. And though disability remains one of the few things it’s okay, even funny, to announce one’s prejudice about, a visible disability is still preferable to an invisible one. At least for me. People are more critical, but they’re also more accommodating.

…As long as I don’t fly Delta, anyway.

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