Dealing with Ehlers-Danlos…or why hyper-mobility isn’t a cool cell phone plan and doing the splits is bad

BY ELLA STEINBECK

I started doing stand-up comedy with a writing class because I needed a creative outlet. I took that writing class and did nothing. I didn’t know what to do. The teacher didn’t recommend open mics or anything so I sat at home not knowing what the next step was. I was depressed and anxious with my life. I am still depressed and anxious but only 70% of the time so it’s an improvement. I had to give up being a hair guru the year prior to taking the class. Guru is probably a strong word. I was a hair stylist for wealthy annoying people who didn’t have any respect for me. Eventually, I started to doing stand-up and haven’t stopped. Well, sometimes I stop, but then I get back up and do it some more.

I am hyper-mobile and although that may sound like some kind of cool cell phone plan, I can tell you that it DEFINITELY is not. It means that EVERY single joint in my body hurts. I look fine on the outside and am in terrible pain on the inside. In case you are wondering how fragile I am: I hurt my thumb “texting” October 10, 2010….it hasn’t stopped hurting since.

There are times that I have to wear a wrist guard and thumb guard just to text and type comfortably. I can’t work out anymore because any repetitive motion is a huge problem. It’s humiliating to get on a bus jammed with people looking and have to ask if anyone will stand so that I can sit. Or I wait until an empty bus comes so I don’t have to ask.

If I stand on the bus I will no doubt hurt a shoulder or suffer a back injury or over irritate my achilles tendon. I wish they made earrings with handicap signs so that I could wear them around the city. Or at least some kind of symbol that says “I know I look fine but everything hurts so it helps if I sit”. I get dirty looks from the elderly for not giving up my seat. It’s pretty awful.

In NYC we don’t have cars to put handicap stickers on so why not our ears or on a hat? When I was young, before the pain, being hyper-mobile meant that I was like Gumby. I could do the splits and put both legs behind my head.

Being encouraged to push the limits of my flexibility in ballet and gymnastics when I was young added to why I have so much pain today. The tendons got waaaaay too stretched out and can’t hold anything in place any more. My muscles stay in spasm to keep my joints in place since the tendons are useless.

Basically, it’s God’s VERY unsexy way of saying I should have kept my legs closed and away from the back of my head. I wish I could tell every young girl that same thing but for obvious different reasons..

Ella Steinbeck is a comic and writer with bad ankles, shoulders, thumbs and hips