"Ballet vs Ehlers-Danlos (excerpt)" - Script

I quit ballet when I was 10.

My mother was very disappointed. I was supposed to be a 3rd generation dancer.

It was an Edwardian fad for women's athletics that transformed ballet from a professional apprenticeship to a recreational pastime. If you thought golf was insufficiently feminine, you could enroll your daughters in dance. My grandmother and great aunt were right there, nearly a hundred years ago.

I told my mother that ballet was boring. I do best by getting all of the information and picking it apart, where traditionally ballet starts by building up with tiny repetitive drills. It felt endless and pointless, and I had no idea where it was going which made it excruciating.

What I didn't tell them - what I couldn't articulate - was that it hurt. 

Let's back up. I was a clumsy kid. I'm a clumsy adult, too, I've just learned to wear leggings to cover the semi permanent bruise I have right here, from running into counters and tables. I did everything I could to stay out of anything athletic. I never knew what my limbs were doing, and I couldn't understand what they wanted me to do to fix it. The dance teacher would tell us, "reach over as far as you can!" and the whole class would do this like pretty little ballerinas. Then the teacher would look over at me and ask "WHAT are you doing?" because I was completely out of center, like some sort of post modernist kinetic sculpture.

Thing is, I could do a lot of it. Not all of it; I had no balance for degagés. The other girls would lock their legs and be fine, and I'd wobble like my knee was a ball bearing. But when they told the other little girls to work on their splits, everyone else would be all (knotted up) and I'd just go (whomp) right to the floor. 

In retrospect, I had a very good idea of what was going to end in tears. But the adults decided I lacked confidence. I followed their directions into injury after injury until an attempt to make me run a mile ended in several weeks of me limping around school, at which point I decided that they were going to listen to my no whether they wanted to or not. 

Next time they pushed, I sat the fuck down, and refused to do anything. At all. They could stuff me into a leotard and transport me to the studio, but they couldn't make me cooperate once I was there.

Thus ended my ballet career. I had no idea why I had so many problems. I didn't care, I just wanted to quit.

Many years later, I was in the middle of a brief but enjoyable fling with an acrobat I met after I accidentally ran away from home and joined the circus - long story, back the show and you'll see it. Anyway. One night, he happened to notice that my fingers did (this). Oh! he said. You're hypermobile.

Huh. That... sounds like a professional opinion. 

I looked up joint hypermobility tests on YouTube, your one-stop shop for crazy conspiracy theories, cooking hacks that might burn your house down, and casual exercises in self-diagnosis. I found one for rotation of the hip joint. You can do this yourself, if you can't reach with your leg extended you can use a strap -- most people get their leg to about 90 degrees. (kicking things off the windowsill behind my head.) I... don't think this test is calibrated for me.

Another discovery was the Beighton Scale. It's a measurement of general joint hypermobility, used for diagnosis of something called Ehlers-Danlos syndrome. The higher you score, the bendier you are. 5 of 9 gets you a diagnosis. You get one point for bending over, knees straight, and touching the floor with your palms. Another point for each knee that caves backwards. One for each thumb that you can bend back to the point where it grosses people out, and for each pinky, and each elbow....

Ehlers-Danlos is an inborn error of collagen formation. It is congenital and genetic. I used to joke that I was such a mutant I actually failed peewee ballet, I had no idea I was right.

When I came back to dance as an adult, I realized two things. One, if I wanted to stay safe, I had to be prepared to say no a lot, and walk out on anyone who didn't listen. And two, if I wanted to succeed, I was going to have to find the weirdos.

I really just wanted a teacher who would accept that this is the way I am and not see me as a collection of deficits to be corrected, but it turns out there are a few who actually want to work with it. There's one I'm in class right now who is very big on the idea of 'use what you've got'. Not just for me but for everybody.

We were doing a street jazz piece in class one day. This particular combo had a turn where he wanted us to 'drive yourself around with your left'. Another student was having a lot of trouble with it. It was obvious what the problem was -- any dancer knows you have a good side and a bad side, and this turn happened to be to her bad side. 

Any other dance teacher would have told her, okay, so this is what you do to train your bad side to be better. In other words, fight your deficits.

But that's not what he said. His solution, which I really think applies to many things in my life as a D-list X-Man, was to tell her, "Okay. I know I said to drive yourself around with your left, but I need _you_ to pull yourself around with your right."