Disability From The Inside Looking Out

I've been reading Jay since she was barely out of her teens, discovering herself amid the absurdities of urban Toronto as a fledgling drinker, socialite and social worker. She's come a long ways, baby...

NOW YOU SEE ME

"I am the face of disability. It's not necessarily (hopefully not, anyway) the face you expect to see getting out of the car in a handicapped parking space, but not every disability comes with age, and not all are visible."

"We call them "hidden disabilities" although if you have known me over the past 10 years, you'll know I have trouble hiding it, as much as I'd like to. I have chronic pain. Deep and abiding pain. Pain that never gets better but does get a whole lot worse, at inconvenient times, and in suprising and sometimes humiliating ways. I have an incurable disease, an "orphan disease" which is a pitiable term meaning that there are no doctors in my country with any kind of knowledge of it, and there is no funding being allocated to rectifying that. When I meet a new doctor, I have to spell out my disease so they can Google it, and then I am their guinea pig while they throw treatments at me just to see if any stick. They never really do. I wake up in pain every day of my life. No, that's not quite true. Some days I don't wake up because I was in too much pain to sleep. My good days are more than enough to keep most people in bed but I lived that life in the early years of my diagnosis, and it's not for me. Lots of people with my disease are on disability, but I'm trying not to be one of them. Instead, I structure my life around my pain in order to live as fully as I can..."

Do read the whole entry at her blog Kill The Goat. It's an enlightening piece.