My Body’s Bad Glue

Carolyn Zaikowski
9 min readNov 27, 2022

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.

A photo of yours truly. I have a black hat on and a blue sweater. There’s a white wall background. I’m looking off to the side a little.

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 I just then?

To sublux is a medical verb that means to partially dislocate. Now I know the word. But I still don’t understand what’s on either side of subluxing, the nouns surrounding the action. What is the body that moves so strangely? Where do I start and where do I go? What is this container made of if it so easily slips away from its own definition, the false definition of my solid body?

My stomach, eyes, veins, skin, and heart also slip away from themselves. My stomach has long been plagued with maddening symptoms, all manner of extreme pulling, pushing, bloating, leaving, and staying, with test after test coming back negative. One specialist, his sense of self secretly subluxing because he couldn’t find a diagnosis, wrote me a referral to a psychiatrist. My eyeballs, for their part, stretched and stretched starting when I was about eight and kept stretching into severely elongated myopic eyeballs. By the time I was twenty-six…

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Carolyn Zaikowski

Author, “In a Dream, I Dance by Myself, and I Collapse” (Civil Coping Mechanisms) & “A Child Is Being Killed” (Aqueous Books) http://www.carolynzaikowski.com/