"This will never happen to me"

On October of 2021, my eye was falling out. 

I didn’t know that. 

And I would find out, over the next 36 hours, that almost no one can recognize the difference between losing an eye and losing your mind. And only one person in my world would question whether or not it was a grave prejudice to have to establish that difference, in order to get the help that I needed to safe my life.

I have Ehlers-Danlos syndrome. An autoimmune disease that attacks both my nervous system and joint tissue. It’s like that kid song the brain bone’s connected to the hip bone, but it’s more like if you have a disease that’s attacking you’re joint tissue, your brain is doing a lot of desperate calculations to overcompensate for the fact it can’t “see” and “hear” anymore in the traditional sense and Oh, yeah, … your eye just might fall out.

That will never happen to me, I said, no more than a few weeks before when three different smart people (a physical therapist, a nutritionist, and a friend of mine with EDS) all told me anecdotal stories of women whose eyes came out and caught unawares in dinner plates, or under their foot in exercise sessions—like some kind of Gothic morality play.

I’m a closet Goth-girl—a true Southern Gothic. Enthralled by the horror of eyes falling out of people’s heads, I no way, never, thought it would happen to me. I was not a coming apart kind of person. I was not that kind of girl.