Living Extremophile: Life with Invisible Disability

On this sunny, way too-hot summer day, I can picture you, reader. Perhaps you are curled up on a couch, or finishing up your work-day dreaming of a nice sit, walk, or bike ride in a sunny park thinking, "Thank God on a day like this, no one would be mean enough to write an essay incorporating everything from the history of hysteria, neurologists like Charcot, neuroscience developments, authors such as Alice James, the James family, syringomyelia, multiple sclerosis AND hypermobile Ehlers Danlos syndrome! 

And now, after all of that buildup...the example.

Photo by  Jilbert Ebrahimi  on  Unsplash Let me be clear here about one thing before getting into the meat of White Fragility and why I feel like there is an argument to be made that Able Fragility might exist. Ableism and Racism are not the same thing. They are not the same experience. Though ableism and racism share in categorizing and leading actions towards people in systemic discriminatory, prejudicial and marginalizing ways based on an a perceived bodily difference (disability or skin color) the results and experiences of the communities affected are fundamentally different (with the exception of intersectional identities).

I hesitate to use these words to describe the phenomenon. It is there, it is so very similar and so very predictable in its responses. Yet, I do not want to co-opt or move attention away from the idea of White Fragility, which is finally getting some traction in white spaces and with white people, so that we are starting to see and learn how we have been harmful to Black People and People of Color, even when we have not been meaning to be. I'm open to other terms and ways to call what I'm writing about if people have them. So this post will go in several parts. It may take me a minute to get through writing each part of it. Also, I am so open other language ideas to describe it.

(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...