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For the time being, my hypermobile Ehlers-Danlos syndrome (hEDS) has me reliant on mobility aids. My hEDS is typically quite invisible. Well, aside from that time my brain swelled and 1/3 of my hair temporarily fell out. Oh EDS comorbidities, you are full of surprises. No worries, I combed it over and it grew back.
This walker is the most outward sign of my disability that I’ve ever had. I didn’t let people see my vision go black. I didn’t let people see my bones ache or my organs get weak. If I was going to faint from PoTs, I sat on the floor and let people chalk it up to, “boy, is she quirky.”
The walker came along post hip reconstruction surgery. Oh was I insecure about it. There I was, faced with this temporary emblem of my disability and a new decision on how to present myself as a person with hEDS.
Should I hide? Should I worry about all those uninformed people who don’t understand that some of us only need a walker sometimes?
Years ago, I dated this man who would say, “Stop saying you’re disabled. I don’t think of you as disabled. I think you’re hot,”… and so I did. I don’t know why, I’m not even going to say it was him. It was me. It was society. It was the idea that disabled people are somehow broken to the point of being unworthy. It was a lot of things. Things so many of us with EDS know so well that I don’t even need to say them here.
I’m a stronger person now than I was then.
Disabled isn’t a word I say to mean “I am unattractive.” Disabled isn’t a word I say to mean I am unworthy. Disabled is a word I say to mean “I might need an accommodation to do this because I have to try harder- just to exist. And you know what? I am good at it.”
So when life handed me a walker, I painted it GOLD. We are just as precious as everyone else. Please don’t ever forget that.Tags: hEDS, hypermobile EDS, POTS
Categorized in: Stories