Living Extremophile: Life with Invisible Disability

(Note: I began writing this piece on the dangers of diagnoses and legitimacy  about a year ago, and never got back to it. So the reeling phase is pretty well past!  Also, early in December of 2019, the geneticist I saw diagnosed me with Hypermobile Ehlers-Danlos Syndrome. So new reeling process in progress.

On yet another sick day due to URI (upper respiratory infection) exposure, I’ve been tossing around an idea about Western medicine. At first I thought that Western medicine’s conception of germs and microbes had completely divorced any concept of personal responsibility from illness. But I was wrong. It just allowed it to be misplaced.

There is a sunlit staircase I can see vividly in my mind, made of the light-colored stone that so much University architecture uses. To this day, I can’t remember if it was Watson or Anschutz (probably Anschutz after a Psychology class), but I remember the warmth of the sun spreading between my shoulder blades. I remember how my energy that day felt like the ground was nudging me up with every step. I jogged up the steps to the top and blew through the door of the library to study something clinical and science-like that really interests me but probably would bore most readers (really admittedly, I am pretty dull unless you somehow break through my shell, which can be difficult!). It was one of those few perfect days without pain or fatigue enough to really break consciousness. It was a day I felt so free and untethered that it felt like if I just jumped a small way in the air, maybe for a second, I could fly. Or maybe for me, being able to run up some steps was being able to fly.