You Don’t BreakAllison Darcy
The soles of my feet, dirty from the barefoot laps we just ran on the circus gym’s sprung floor, meet each other on top of a blue foam block. It’s a modified butterfly position; my legs form a diamond: butt on ground, feet on block. Each knee to the side.
Alan, new to contortion class, puts his weight on my low back. When he stops, it is not because my body does but because my head is now on the block with my feet. There is no farther forward to go, so he places hands on my thighs and presses them down too. “Tell me when,” he says. I don’t.
Coach, with her trendy cropped sweatshirt, walks by with another block. She lifts my feet and places it atop the first, my feet now elevated eight inches do that Alan is able to press down once more.
I am naturally a front-bender—but it is graceful backbends which make up most tricks and poses, so I sometimes think I fooled Coach into accepting me into class with this move. From where I stand now, months of these mornings behind me, I don’t think of my splits as impressive anymore. I forget that most people would—do—call me flexible.
I’m not sure how good I have to get at this to be qualified to use the name “contortionist.” All I know is it sounds better than “debilitating connective tissue disorder.”
* * *
One day, Alan asks, “So why do you all do this?”
The other three “regulars” and I look at him with no answer. I think we mostly know we are too old to become professionals. We just do it, I imagine us saying, we like it. That’s all.
Eventually, someone gives some answer. I don’t know what it is; I’m focusing on actively engaging my upper back while Alan stands above and behind. He pushes his knees into my shoulders to shift my chest forward, pulls arms up and back.
If I am at pain here, it is a pain that makes sense. This makes it different from the rest of the time.
“What about you, Alan? Why are you here?”
“Oh, you know,” he shrugs, and this he says without hesitation: “I wanted to learn some life skills in the air, in case school doesn’t work out.”
* * *
My life has been filled with circus tricks: jump-roping with my arms, teaching nieces and nephews to do the splits, drunken party picnic-table backbends, thumbs bent to wrists and elbows upside-down.
My life has been filled with small pains, things I had thought normal. When I saw the DO who ordered my MRI, he called medical students in to watch me dislocate my shoulder.
“Doesn’t that hurt?” one said when I was done, a question nobody asked when he’d told me to do it.
Later, that DO would report my brain was too big for my head: Chiari Malformation. “Could that be causing this pain?”
No, he said, they found this accidentally.
“So… what’s doing it?” I asked, in that wide, extended pause.
“From everything I’m seeing, there’s no reason you should be in pain.”
At home, I did my own research and found that my compressed brainstem was comorbid with Ehlers-Danlos syndrome: malfunctioning collagen that can cause—among other things—loose and unstable joints, pain and fatigue, unusually fragile skin, and spontaneous rupturing of arteries. It is rare, the searches say. It takes, on average, 14 years to diagnosis. There is no cure. No medical specialty oversees it. Most patients, diagnosed or otherwise, manage symptoms on their own.
* * *
When I went to contortion class the first time—a hail-Mary found after Googles like “what is it when my body does things that don’t hurt but should and everything else does hurt holy fuck” and the more reasonable “how do I learn where it’s safe to move my joints?”—Coach asked if there were anything she should know about me. “I’m hypermobile,” I told her. “I don’t naturally know how far is too far, and so I’m trying to learn—”
“Okay,” she said. “Me too.”
* * *
When it’s just the four regulars in class, we talk more freely. While running and lifting, between instructions and clarifications, about our dogs and Game of Thrones and which doctors we’re seeing next.
I have found that circus people are like any other group—only, the ways our bodies betray us is on the topics list too. Here, “my shoulder popped out while I was driving” is a normal thing to say. Someone might have a solution. Nobody asks you to demonstrate.
I consider this as we move into back strengthening. Conversation stops. Today we’re lying on our stomachs with our feet tucked under stall bars, using giant rubber-bands that pull upper bodies towards the wall: horizontal backbends between floors and warehouse ceilings. After thirty seconds, we slowly let go of our bands but keep our bodies in space as long as possible, the switch between passive flex and active strength I was never taught before.
Later, I comment casually that in a certain position, two fingers go numb.
“That’s your radial nerve!” the lady answering phones at the front desk shouts. “Just hold your shoulders up like this.”
* * *
I process pain well. At least, I think I do. I am silent during most stretches, focus on turning tension to strength. But sometimes, the low hisses of effort slip out against my will.
This is okay. Contortion, neither a competitive sport nor one centered on inner peace, allows for these complaints. We practice together but advance alone. Our progress relates to how hard we work. We either do it, or we don’t.
I can do this, so I am.
And yes, I’m proud of it. I think I look good. I post pictures on social media, measure angles on a chart. I feel I am owed these: my small vanities. This body was made wrong. I’ve resolved to make it impressive.
Okay, I process pain well—but on the days in bed, when I’m realizing a “real” job would kill my energy then relationships then me, the emotional weight of processing feels almost too much to bear. My bed is a frozen hellscape, pain too great to focus or sleep. So I scroll, I’m always scrolling, past old friends who don’t know and my strange amalgamation of support groups, their prayer-trains and gut microbiomes and crusades against their nurses, and one hard day, I scroll past a picture of Coach’s side oversplits, not from a performance or gym but the ordinariness of her bedroom.
“Bend so you don’t break,” the caption says.
She has small vanities of her own.
* * *
It is six years past first symptom when I walk into an unrelated office and stay for two hours. The OBGYN, unexpected expert, sees the “stretch” marks I’ve had on my thighs since childhood. She sees the bruises that don’t fade, my healing as slow as a first controlled backbend-from-standing. She watches me cry, defend my experience in my body. She asks if anything helps. I tell her the strength gained from contortion class.
“You’re in a contortion class,” she says.
“Let’s get you a genetic test.”
Later, in my notes, I will see that she wrote “Patient clearly has Ehlers-Danlos.” I will tell every doctor I see going forward that somebody wrote those exact words, hoping that now they’ll do something to help me figure out how to exist.
* * *
You come to have a new normal, realize this is not exceptional. Every ballet or yoga class I’d been in had me bending far and easily. In contortion class, my silly party tricks might as well be considered remedial. Audrey does middle splits in a handstand. Abby does backbends resting on feet and elbows.
You come to have a new normal. When they ask you to rate your pain, you think “6” and have to figure out if that’s everyone else’s “9.” I’m still not sure how to dress when meeting a new doctor, or how many symptoms I can bring up at once. I still haven’t accepted that “feeling functional” is the goal, not “feeling better.” I’m not yet a good pain patient. I suppose I’ll have to train more.
* * *
This is what I can’t tell them: I bend because I am broken. $180 every ten classes isn’t something I can send to my health insurance, but it’s the closest I’ve come to getting help.
“Why do you all do this?” Alan asks.
Because doctors keep saying there’s nothing wrong with me, and the other day, I laughed and my rib popped out. Because I hit my deductible twice, and that was on the good insurance. Because my friends that still invite me out don’t talk about dislocations and stop inviting me if I do.
Because right now, I can’t drive for more than twenty minutes, but I can almost touch my butt to my head. Because healthcare is a circus. Because this is what I’ve got.