I can't stand up from sitting without assistance anymore. It may seem like a small thing, maybe one people take for granted being able to do (or not being able to do). But it's the latest thing in a litany, a timeline of function lost. Ehlers-Danlos is not technically degenerative (the genetic mutation is stable), but virtually all patients see a deterioration in pain or function, so colloquially it's appropriate to call it a progressive disease, and it's certainly my lived experience of the disability.
Perhaps it's because I haven't yet put the years of experience into this disability, but the progressive, unpredictable nature of it makes my primary emotional interaction with it one of fear: what is it going to take next? When? How far will it go? When I can't do something, even just because of an injury like a sprain, I get obsessed with wondering whether I'll be able to do it again, or whether that inability represents the beginning of its loss. I get my hopes up every time something comes back (I can walk without assistance again--I couldn't a week ago!). I cry bitterly whenever those hopes are dashed. It's a constant frustration, never being able to depend on my body and hating it for its little embarrasments: the spilling, the tripping, the dropping of things.
I feel guilty about experiencing my own disability this way, when I argue so strongly against its portrayal as a roundly negative experience. I don't want to betray my politics through my negative experience of disability. I wonder: where do stories of more negative disability experiences belong in a progressive, disability-aware narrative?
