The worst part, I think, was having to scrub cerise.
There were very few things I was sure of as a nine-year-old girl.
One: I wanted to fall in love.
Two: I wanted to be a veterinarian, or a singer, or a writer.
Three: My parents were my best friends.
Four: I was not normal.
Five: As a nine-month-old baby, I was given nine years to live.
My awareness was, in effect, a shifting shadow. I knew about my disability, just as I knew the alphabet or the way to my father’s heart—a tiny, palm-sweaty hand, twined around his pinky finger—or the cracks to avoid in the sidewalk near my house. I was diagnosed with Spinal Muscular Atrophy, type II, at nine months of age. I was in a wheelchair, and would never be able to walk. Sickness was bad; hospitals were worse.
My parents were honest people. They did not keep secrets. There was, however, one exception to this rule: My death sentence.
I was a child. I didn’t need to know.
Looking back, I am grateful for their silence. I was an anxious child, scared of an endless number of things. I knew the danger of everything from pneumonia to the common cold, and kept a certain diligence when it came to my friends’ health; germs were not allowed in our home. Knowledge of that horizon, ever looming, would’ve leeched the joy—the sunshine and laughter—from my early years, leaving them cold and desolate. Apocalyptic, even. The beginning of an end.
So, I didn’t know. My parents kept their one secret, and I lived life to the best of my ability. It was not a particularly kind childhood, but I was loved with a love that transcends the body. It is that love that I look back on with gratitude.
The year is 2002. I am seven-and-a-half years old, and I am undergoing a life-threatening operation.
We meet the surgeon. He is kind, gentle, charismatic. I hate him, with all the ire a seven-year-old can muster. I am scared for my life, and scared by his presence—the way it fills the tiled room. My instinct is to trust him, to place my life into his steady hands, but I refuse.
There’s a word that’s thrown around: scoliosis. The surgeon puts my X-rays on display, and I blink up at them, fascinated by the sickly curve to my spine. It is such a quiet, insidious thing; the gentle grade—warping my body, and my life along with it—is all I’ve ever known. I feel fine. I do not understand why this so-called scoliosis is feared.
I don’t remember much. Whether this is a byproduct of the anesthetic or an attempt at forgetting, I don’t know. Maybe it’s just the natural workings of time.
What I do remember is this: The hours before. Laying demurely, statue-like, on the showering table, watching as my mother scrubs cerise-hot-pink nail polish from my finger- and toenails. She is not a gentle person, not by nature, but her touches are laced with a violent tenderness, like she is preparing me for the pyre, or something equally as ritualistic.
I say my goodbyes. To my bedroom, my father’s desk chair, our kitchen table. The house, normally filled the creaking aches of worn wood, is still. Silent. An unwilling recipient of my nervous energy.
My parents are optimistic, but there is still this knowledge, like a dark promise: I might never be here again.
We pile into the van—nervous, but exhausted. The world has yet to tumble inside itself, to peel back the cover of night. At this point in time, the suburbs are a sleeping giant. Houses line the curved street, their windows shuttered against the early morning silence. Streetlights blur in my teary vision. The windows streak a hazy gold.
I’m having the surgery at a local university, nestled in the heart of the Minneapolis-St. Paul area. The city is, to this day, a monstrous entity. It stretches across the land, ravenous and unforgiving, and I am obsessed with it—my own private labyrinth: a place to get lost in. To my younger self, though, full of dread, this city is the stuff of nightmares. It rises sharply to meet us, clambering over bridges and the shimmering river. Dark and unmistakable.
Still, I love it: the twinkling lights of the cityscape; a menagerie of color. I’ve never seen the city under cover of night. It is a wild, unknowable thing.
The silence, I think, is too much—for my parents, anyway. They tell me stories of their childhood, trying to distract me, and for a while, the future obscures. I am safe, wrapped in my parents’ love and a life they once lived.
For the first time in a long while, things cease to hurt.
We reach the hospital.
Looking back, I know what it is. It has all the makings of an anxiety attack. But I am young, too young to know what anxiety is, and the only thing that makes sense is the weight of my father’s arm, pulling me into his frame.
We’re ushered into a waiting room. I look out: a sea of faces, offset by the gentle beginnings of a sunrise. The moment is punctured by a sob, low and mournful, and followed by the shrill screech of a child in pain. I grip my father’s hand, let him read The Chronicles of Narnia to me. At some point, I am placed on his lap. The tears start again, hot and shameful.
It is now that I realize: I am too young to die.
Years later, in times of hardship, I return to this moment. My body, a product of genetic cruelty, pinned against my father’s chest: loved, accepted, known. He reads to me, his voice a spot of clarity, and I feel—without any sense of doubt—that I am safe.
Peter did not feel very brave; indeed, he felt he was going to be sick. But that made no difference to what he had to do.
My name is called.
We make our way through the waiting room, down a hallway, into another room. The walls are painted green, and are guarded by a parade of cartoon animals, pacing the trim. I’m still crying, and the animals—meant to be a friendly face—only make things worse. The nurses come, mouths frozen in endless terror, and the panic pounces: sharp, complete.
My parents dress me in a hospital gown. I’m cold, too cold, so the nurses bring me heating pads and a warm towel. A woman holds my hand, presses her fingers against the taut stretch of skin at my wrist. “Just to get your circulation going,” she says, smiling. The mask is motionless.
The heating pads and warm towels are essentially useless. My disability prevents me from taking aerosol anesthetic, so an IV is ordered. I sit on my father’s lap, his arms a halo of security, the hospital gown draping over twig-thin limbs.
I am poked 11 times. The pain is unbearable; I cannot stop crying. My parents are forced to watch, to cradle my head against their thighs and stroke my hair—drenched with sweat and tears—from my forehead. The animals laugh from their perch overhead, a cruel and bleating sound. My body aches. Every part of me trembles.
My mother is patient, endlessly gentle. It’ll be okay, sweetheart. My father is restless, pacing the length of the room. I’ve never seen him so angry.
A doctor comes, the best in his department, and my father’s voice cracks when he asks, “Can’t you do something? Isn’t there anything you can do?”
The doctor is sorry. He is so, so sorry.
A needle finds purchase, somewhere. I am given a sedative, and the pain melts, giving way to a wise ache. The fear returns, rearing its ugly head, and I scramble onto my few remaining thoughts: I am about to die. I am about to die, and there is nothing I can do. I am seven and a half years old, and I will never hear my father’s voice again. I will never see my mother’s laugh again, teeth bared, head thrown back in urgent—almost animalistic—intensity.
“I’m so scared,” I say. “I don’t want to die. Please don’t let me die. I don’t want to—”
“We love you, sweetheart,” my parents say. In my mind, they are crying. “We love you so much. You’re going to be okay. We’ll see you soon.”
A nurse touches my forehead. I buck, seeking the grooves of my mother’s palm, the roughness of my father’s hand. “It’ll be okay, sweetheart,” she says. “It’ll be okay. Just relax.”
I am transferred onto a wheeling table. My father presses his lips to my skin, and I let out a desperate, gurgling sound, trying to keep sight of my parents in this sea of tile and cloth. Trying to burn their love to memory, arcing white-hot across my body.
I’m wheeled down a hallway. The white lights of the hospital corridor are insufferable, pinwheeling across my vision. In my mind, I am begging. (I’m so scared. Please don’t let me die. I don’t want to die. Please don’t let me die. I’m so scared. Please. I want my daddy. Please don’t let me die.)
My last thought is of my father’s face.
I wake to the quiet puncture of a needle, tucked between my neck and shoulder.
The surgery was successful. I am the lucky—but reluctant—owner of two spinal rods, knitted surgically into my back. They will grow as I grow, keeping my spine from curving further.
I am alive.
It is all that matters.
I am 12 years old. Or maybe I’m 11, or 13, or 10.
I am sitting in a doctor’s office, listening to a man talk about my hips. It is a strange, clinical feeling. Detached. My X-rays are pinned to a board, hanging on the far wall, and I trace the slopes with quiet eyes. The lace of my body, black and white and timberwolf-gray, is a lure, even though it comes with a sick disinterest—a sharp hook of grief.
My father and I are going rollerblading today. It’s one of our favorite traditions, and it’s all I can think about. My hips are extraneous.
“As you can see,” the doctor says. “Her hip is popping out of socket, and will continue to do so for the foreseeable future. Now, we can always go in and surgically fuse…”
Looking back, I know what it is: An anxiety attack. But I am young, too young to know what anxiety is, and I am barely aware of anything beyond mere instinct. My body stands to one side, betraying itself. My vision speckles white, my lungs crushed beneath the weight of fear, and I find myself on my back, staring up at the tiled ceiling. Staring, unblinkingly, into the white lights of the hospital corridor, watching my parents as I am wheeled farther and farther away from them. My world inverts, liquid spilling from an upside-down bottle. And again, that silent prayer.
I don’t want to die.
My father grabs my hand. I realize, dimly, that I am crying. Sobbing. Incapable of breath.
The doctor relents. “As long as you’re not in any pain—”
“No,” I lie, somewhat. “It doesn’t hurt at all. I can barely feel it.”
I am 21 years old.
Both my hips are out of socket.
I have stopped wearing nail polish.
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