So many people have tried to express the experience of my pain for me that I feel I must now fight back with an expression of my own. So here is my account of disabling pain. I’m writing it because before it happened to me, I had no idea it could happen to anyone. In all my life, I never heard about or imagined a future that looked like what mine became. Which is a shame.
Because as long as pain continues to be explained and defined only by medical professionals and ignored by disability activists who focus mainly on the ways society limits disabled people, people in pain will remain in darkness about large aspects of their own experience.