My Body’s Bad Glue
Note: This essay about Ehlers Danlos Syndrome was originally published in Entropy Magazine, a lovely and important journal which is now departed. After several requests to have it public again, I have decided to repost it here until it finds a new home.
I have Ehlers-Danlos Syndrome, which means my body has bad glue. My glue, an amorphous, drunk blob or cloud, playing tricks, getting things all wrong, incapable of indicating what is real. My genes, speaking to my body in the wrong language, refusing to bind me, utterly stupid in regards to what level of adhesion properly constructs a body.
My joints have been subluxing for as long as I can remember, way before I knew the word “subluxation.” Shoulders and elbows slightly off here and there. Party tricks in which I can clunk my hips in and out and make people cringe, wrists that get caught on themselves, knees that wake me up because they traveled too far beyond themselves in the night. Fingers and toes I can “pull out” and ankles that are too easily rolled. Uncanny pain from a body gone too far. I never knew this wasn’t normal. The subjectivity of one’s personal experience is so sneaky. It seems I’m always falling, breaking things, a clumsiness that surprises me and makes me lose trust in my own solidity, as in Where did I go? I swore I was maneuvering correctly, aiming, being careful not to knock over any subjects or objects. What was…
