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I was diagnosed with classical Ehlers-Danlos syndrome (cEDS) at birth; my mother had it and when her water broke a month and a half early, it was confirmed that I had it too.
As long as I can remember I’ve been in and out of hospitals with some new injury or joint issues. Each year new scars join the old ones on my legs and arms, reminding me that I’ll never be able to do the things that other people my age can. I’m 16 years old, and my mother likes to call me a daredevil. I just want to do the things I love without having to worry about a trip to the hospital. I love all things thrilling, like surfing, rock climbing, and skateboarding. But because of my condition, I can’t, at least not the way I wish I could. Not without getting cut or injured, or being paranoid about getting cut or injured.
When I was younger, I wanted to play soccer like my older brother. Too bad. Twelve kids kicking at each other’s shins didn’t bode well for someone with tissue-paper-thin skin. A few years later I got into skateboarding, only I was never allowed to go to the skatepark with my brothers because my parents wanted to avoid yet another trip to the hospital. This was the story for every sport I picked up, every physical activity I enjoyed. Running was too hard on my joints. Swimming meant bare legs and arms. I even managed to hit my shins just from tripping backstage at rehearsal for a school play, earning me a trip to the hospital, and seventeen staples in my leg.
I feel like I’ve spent my entire life pretending that I’m normal just to have another injury slap me in the face and remind me that I’m not and I never will be. For somebody who wants with every ounce of her being to be fearless, this condition makes it pretty damn hard.
Anyway, I’ve had a lot of time to think about what EDS is to me. I’ve had 16 years to hate it, to cry about it, to wish it away. But honestly, at the end of the day I know it’s made me stronger. It’s made me stronger because I’m not afraid of pain anymore. I’m not afraid of a scar, or my skin being imperfect. Because EDS has taught me that the important things lie in the imperfections. Every scar on my body represents a moment that I didn’t let my condition hold me back from doing something I love. EDS has made me cry and scream and bleed, but it has never made me weak. It has made me strong, and that’s something I wouldn’t trade for anything.Tags: Athlete, cEDS, classical EDS, Self-Advocacy, skin
Categorized in: Stories