The Skeleton Dance
The Skeleton Dance
Written by Jay guarino
art by Lauren mallett
It is Halloween, and I am six years old. Mrs. Dufault turns the lights out and starts the projector. I sit ensconced in darkness as she opens YouTube and pulls up a song about the human body. A fleet of animated skeletons begins dancing on the screen. Dem bones, dem bones, dem dancing bones doin’ the skeleton dance.
The foot bone’s connected to the leg bone. Doctor Pelto tells me he could cut a sliver of bone from each ankle and insert metal stops. I wonder if I’ll be able to go through a metal detector, if the six months in a wheelchair would ruin my life. I think about being 12 and having my gym teacher shame me for not being able to run the mile. I walked the three laps in silent anger, discovering the meaning of the word “bitch.” The aching of my ankles mixes with the hot venom in my throat, and the lack of answers means I’m left without tools to defend myself. I stand empty-handed in the middle of a war zone. I am destined to lose.
The thigh bone’s connected to the hip bone. My physical therapist lays me back on the table and tweaks the position of my legs. She takes me by the knee and laughs. “Normal people can only move their legs this much,” Michelle begins, turning my leg clockwise, my foot circling the edge of my body to point toward my neck, “But you can go aaaaalll the way here.” My leg bends over 200 degrees. I could put it comfortably behind my head if I so choose. I remember this as I look in the mirror at my naked body, the bones jutting out of my skin like an animal trapped beneath a blanket. A skeleton with double hipbones. Would I survive childbirth, or would my body tear itself in half, split down the seam like thumbs on an apple?
The hip bone’s connected to the backbone. I call Mom in tears because I can’t stop the pain. Doctor Patel prescribes diclofenac sodium gel, and I wince as my underwear sticks to my lower back. I wonder if doing a better job correcting my posture in middle school could have prevented this. I can no longer drive longer than an hour without searing pain overtaking my back. I used to think I’d travel the world, sitting in the car for days at a time to catch a glimpse of what lies beyond the Massachusetts state lines. Now, I wonder if this pain is a prison sentence, if I’ll ever check off a single item on my bucket list.
The backbone’s connected to the neck bone. My neck twists this way and that, crackling like fire. I remember when I first discovered its tenderness, pressing the pad of my thumb to the dip in the center—fragility hidden just out of sight. Another nauseating realization added to the list. Doin’ the skeleton dance.
Shake your hands to the left. Shake your hands to the right. Doctor Vanhelene makes me a set of custom splints that pass for jewelry. A stranger compliments my rings as I pay for coffee, and I smile, a lengthy explanation weighing on my tongue. I wonder if she knows that I can no longer use chopsticks or open soup cans. I wonder if she knows how many blisters are hidden beneath the metal bands, or how I’ve had to relearn how to tie my shoes. It’s like being transported back to infancy and losing all your motor functions. I wonder if I’ll ever stop feeling like a sickly child as I plaster on a smile and slide the cup across the counter.
Put your hands in the air. Put your hands out of sight. I lay frozen in bed, the left side of my body overcome with numbness. Migraine aura dances across my room, swirling and growing like some kind of hypnotic millipede. If I don’t move, I don’t have to acknowledge it. If I look away, I can pretend that it isn’t happening. It’s a bit like praying, willing every atom in my body to get it over with. I bargain with an invisible force to take it away, but there are no miracles here. I am not so lucky. My nose burns with rubbing alcohol, and I try not to throw up.
Wiggle, wiggle, wiggle. Doctor Birbara pulls on a pair of blue plastic gloves. The parchment paper crinkles under me as I scoot to the edge of the table. He prods at my limbs in silence while I contemplate how many doctors I have seen since the age of four. I am staring at glass paperweights on his desk when he condemns me to death with three little words, “Ehlers-Danlos Syndrome.” How strange it is to get diagnosed in a single appointment. To walk to my car in a daze as I feel my world shatter. To learn that everything about my body I thought was normal is, in fact, an abnormality. I’m a test subject, fetishized at the hands of stupidly naive doctors who have never seen a body fail someone so badly.
Wiggle, wiggle, wiggle. I fidget uncomfortably as Doctor Stanley probes my left breast with her ultrasound. The warm gel glides over my skin. I hear her murmuring explanations to a trainee, craning my neck to look at the screen. My heart beats in black and white while she discusses my mitral valve prolapse. The trainee says she’s unfamiliar, and I laugh bitterly. Ignorance is privilege. I hold my breath when prompted, forcing my expression blank as she pushes harder. Funny, that I feel ashamed of my body as I lie bare on the exam table. I didn’t think you were supposed to feel guilty for things you can’t change. I feel guilty a lot these days.
Wiggle. I think about how many doctors have put their hands on me, how many have seen me naked. I think about getting chest pain in the ER, how part of me had already accepted dying at 18. Wiggle. I think about being the only person under 60 in a waiting room. I think about the dirty looks I get when I park in a handicapped spot. Wiggle. I think about how I am meant to trust people who were not taught about me in their textbooks. I think about dying at the hands of their ignorance. Dem bones, dem bones, dem dancing bones. Doin’ the skeleton dance.