Thursday, October 23, 2008

Thoughts on the vocabulary of disability

Billie says: Mattilda has MCS. I say actually I have fibromyalgia. She says oh, I thought you said you also had MCS.

At first it's just the abbreviation that throws me, I always forget what abbreviations stand for, But then it's also the way you become accustomed to a certain word to describe your condition. Since I can't even function this there’s smoke anywhere near me, and even fresh air in the middle of the day seems too polluted with car exhaust, it's safe to assume that I also have multiple chemical sensitivities. Or chronic fatigue, which is pretty much the same thing as fibromyalgia except that the exhaustion is prioritized in the diagnosis instead of the pain. People with fibromyalgia are also surrounded by exhaustion; people with chronic fatigue are also overwhelmed by pain. There's a way in which fibromyalgia is maybe given a bit more respectability in the world, and I'm not sure if that's part of the reason I embrace that term. Of course, my awareness of it all started with the debilitating pain, the pain that I couldn't figure out that's still hard to figure out except it's always there or waiting to be there. But recently the exhaustion has been the most overwhelming part, exhaustion plus sinus drama equals that sadness that surrounds.

Billie, who also has fibromyalgia and multiple chemical sensitivities, mentions a point in time that she describes as "before I got sick." For me it was different, it didn't seem like I got sick so much as the pain became overwhelming, pain from every everyday activity every movement everything I did to help myself stay out of pain. But looking back of course there's a trajectory from a childhood of longing and hopelessness and betrayal and violence and powerlessness to a present of still trying to get it all out.

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