Our feet pound the end-of-life tire track as Emily belts the chorus of Elton John’s “Tiny Dancer”, leaning deep into the “Tony Danza” misquote. Kicking it in to the finish line, she’s rewarded with gasps of laughter while our coaches scream us into home. My lungs stretch past their capacity, legs striding wider than I can control. Oxygen depleted blood roars as I dance on the edge of the great expanse, heeding the call to push harder. Running through the finish line, I tuck and roll onto the infield. Ignoring commands to “keep moving!” as the life of this world surges back into my body.
Eventually the gaggle of giggling teenage girls haul me up for the next set of laps. Few onlookers differentiate me from the flock, in our aughts uniforms of shorts rolled too low and hiked too high. They might see a smiling petite girl with a bushel of curly hair but miss a practiced flex of a hand, shaking off numb tingly spasticity. Or maybe they see a gritty underdog athlete lining up for the next set but miss eye lines deepening and jaw tightening as the flood of glass reenters my veins.
I have lived most of my life running with each foot in a different world,
one experienced and the other performed.
Committing to both realities is convoluted.
I found my spot on the team as a mid-distance runner in eighth grade, four years after a diagnosis of rare paralysis-threatening neurological conditions, four surgeries and extended absences from school. While many of my comrades negotiated disability in plain sight, with clawed hands and mobility aids, I was a lucky one. Nothing much for external perception, only the internal sensation of lightening running through my veins and localized transient paralysis that was more scary and annoying than prohibitive.
I had spent much of the prior year not in surgery yet not in school. Daydreams of a fresh start in middle school quickly collapsed in the social gauntlet of the cafeteria. Elation of securing a yearlong spot among my elementary school friends deflated with clarity. My relationship to them no longer had the privilege of the title.
Alone and with years of preteen medical trauma and chronic pain strapped to my back, navigating the middle school halls became insufferable. Eventually, I simply refused to go, opting instead for my babysitter’s couch and HBO subscription.
Panicked and desperate for normalcy, my parents engaged a psychologist to get me off the couch and back in school. Back to being a normal kid or as close as possible. I did not have words for why I could not go to school, I just knew that it felt bad, the whole time. Not going to school felt less bad.
But it did not feel less bad to my grown-ups.
It was heresy.
They need conformity and normalcy, fast.
I could feel their fears for my adulthood gurgle over the rim.
I could not imagine a future for myself that looked like anyone else’s I had seen before. Not with this lifelong frigid ache coursing through my veins and the threat of major paralysis dangling over my head.
Well, that is not true. That future was excruciatingly easy to imagine. The real problem was I happened to have the gall to consider rejecting it. Consider demanding something more easeful. More peaceful. More desirable. Calling into question the successful future prescribed for the standard issue able-bodied adult.
In that therapist room surrounded by vibrating caretakers, I absorbed a visceral understanding that belonging to my
family, community and world at large was and would depend on my ability to contort my body into behaving able bodied. Deferring to what felt good and what felt bad in my body, blasphemy.
Living in a body with degenerative neurological conditions affecting one in a thousand, would only be lauded after I proved my worth on their terms, by their metrics.
My value tallied in denominations of grade point averages and earning potential.
Receiving the message loud and clear, I am back in school hunting for ways to fit my body into the middle school experience. I chose the track team as my conduit, not because of an affinity for running, but because it was one of the few teams that did not make cuts. It was a team where every body belonged.
I come to believe that I enjoy enduring the punishing training of a mid-distance runner. Every race, a long distant sprint. It was the price for the homework high jinks in the cafeteria waiting for practice to start. Sporting the matching team shirt on track meet days. Filling our bellies with spaghetti dinner carbo-loads. Scream-singing inappropriate Shaggy songs while passing the time on endless bus rides…
It was the price of belonging.
The cost to sell the idea, “Look! I fit here!”
Twenty years in the rearview mirror, photos from this time capture my curiosity. Carefully studying myself in each picture, looking for evidence of the angst that is so salient from that time. But I can’t find any. My smile is big, and my eyes are bright. Nor can I find a trace of my own practiced moves, the deepening eye lines, or clenched jaw.
Which of these were real?
Which one is mine?
Which one is me?
The photographic evidence lays incongruent to my visceral memories of that time. Feeling my Self shrink into my body like an oversized scuba suit. Viewing the world through submarine porthole while flailing at the navigation panels only to clumsily negotiate my body through the hallways.
Even today, I ponder if the pain I am experiencing is real. The intensity of the sensations coursing through my body. If I am hyperbolic, infantile, and weak. Starting to assume that everyone experiences the same drilling hum, particularly as we age. I do not have a mirror to anchor my internal experience in.
Apparently, not even in my own image.