Jessica Rapisarda
Runner-up for the 2021 Spring Nonfiction Contest
It begins, as it always does, with light. At 4:54 a.m., I open my eyes, and a constellation winks to life in my darkened bedroom. Pinprick stars swim woozily from right to left. I squint, rub my eyes, but the aura swells. The hallucination would be charming—my own personal genesis—were it not for the black hole of pain waiting for me on the other side of all that razzle-dazzle.
Now my hands look wrong. Within minutes, my arms go. It’s not so much that they become numb as they become distant. My arms are other. I stare warily at my limbs, convinced that if I stand up, my arms won’t join the rest of me, will hang suspended above the edge of the bed, bodiless yet still clutching a handful of pills.
I admit to a kind of bare-faced wonder at the astronomy of my migraines, the auras that suddenly transform a bedroom or playground or 7-Eleven into a swelling Cassiopeia. But the symptoms that turn my own body into a phantom leave me unhinged. I am an inanimate object, a life-sized doll. I am tossed between agony and existential crisis. Who am I without control over my body, without a clear mind? In darker times, I wonder who I am without pain.
I’ve built my self-image like I might build a house, brick by brick, a sturdy shelter to safeguard my hopes and accomplishments, even my fears. But so many of my bricks are tempered, mixed, and molded from my own body. When the aura takes hold and my body becomes a stranger, cracks form and holes open up in my cozy shelter of self. What might get in? What might get out? Where there was a wall, there is a window; where there was a ceiling, suddenly starlight.
I slink downstairs to the kitchen, downing prescriptions with Gatorade. I wrap my head in an ice pack and prepare to lie down on the cool living room sofa. Instead, I stagger into the powder room and throw up the medication. I take another dose. But again, I curl miserably over the toilet, bringing up pills and bile.
Four hours later, I am hooked to an IV in an emergency room, morphine rocking me in and out of consciousness on great, soft waves. At the foot of my hospital bed, a woman in a white lab coat speaks to me with a look of urgency. Her face glistens with sweat. A damp hank of hair clings to her brow. The message she is trying to convey takes great effort. I hear the hum of hospital machinery, the murmur of patients in adjacent beds, but this woman is on mute. Her lips move, her hands move, her neck is corded with the strain, but no sound escapes her mouth.
“Lady,” I croak in frustration, “you need to speak up. I can’t hear a thing you’re saying.”
Because my head is wrapped in ice packs, I lack peripheral vision. A hand touches my shoulder. “This is your nurse. I’m on your right. Is there something you need?”
Her mouth churns, the woman at the foot of my bed. Sweat beads her upper lip.
“No. No.” I manage, “This lady here. This lady here at the end of my bed is trying to say something. Nothing’s coming out.”
“There is no one at the end of your bed, ma’am,” the nurse calmly explains. “Just close your eyes now.”
“She has a message for me,” I slur, before I am rocked under.
She’s a morphine apparition. She leaves a cold pit in my gut.
My neurologist convinces me it’s time for drugs. Not just the nice drugs that make me feel physically melted and emotionally wide, but daily medication to be taken with milk or yogurt.
My doctor trills in her vigorous Brazilian accent, “I want you to consider topiramate, Jezzica.” My name sounds like neon humming to light on her lips.
I lurch forward in my chair, feeling a red blotch blossom on my throat.
“Ah ah,” she tuts. “Before you say anything, you should know that this is a new formulation. It doesn’t have to be like the last time.”
Topiramate is an anticonvulsant heralded as a miracle drug for long-suffering migraineurs. I took my first dose in 2004. If it ever really helped, I don’t remember. Those months were a kind of twilight, the edges of time and place soft, uncertain. The drugs indiscriminately shut down one physical system after another.
Unable to sleep, I haunted the 24-hour Kroger, filling my basket with boxes of tea or discounted lip gloss. Unable to hold down food, I called my friend at 6 a.m. from the bakery aisle, hungry, crying, “Come pick me up. It’s not safe for me to, uh, to be in the car. No. I mean. To be. To be. To drive.” Within a year, I’d quit the stuff.
In the years since, I’ve relied on a combination of Imitrex and Vicodin. The Imitrex, a triptan drug that helps to constrict swollen blood vessels in the brain, does the heavy lifting. It frees me of the crushing pain that builds and builds behind one eye and that, left unchecked, alters my equilibrium and turns my gut, leaving me in a sweaty, shivering heap on the bathroom floor.
But the Vicodin soothes the remaining tendrils of pain that linger in my jaw, neck, and shoulders. More than that, it makes me feel good, like my blood is made of warm smoke. Migraines leave me bereft and angry; Vicodin leaves me sensuous. I want to write Vicodin’s name in bubble letters on a notebook: “Vicodin,” “Jessica Vicodin,” “Mrs. Jessica Vicodin.” It’s no mystery to me why people become addicts. But there are only so many hours in the day that I can afford to spend in a state of narcotic chill. I have a marriage and a job. I have a five-year-old son.
My neurologist pushes a sample packet of pills across her desk.
“Enough for 2 weeks,” she says. “This time, we titrate up very slowly, Jezzica. The side effects will be much less profound.”
She gives the word “profound” its due, widening her eyes, stretching her neck as though the word were a great egg that she must lay.
I slump forward, rake the packets off of her desk and into my purse, sulking like a teenager.
Taking the topiramate feels like a failure. For years, I had avoided daily medication by carefully managing my diet and sleep schedule. I drink enough water to make the best of bladders wince. Temperature and barometric pressure fluctuations force me indoors. Once a devotee of merciless, high-impact exercise, now it’s enough for me to trundle laundry up and down three flights of stairs. In warm weather, I walk my son to the neighborhood playground. When it rains, I curl like a fist around a heating pad and wait.
Twice each month, an acupuncturist stipples my face or fingers or feet. Sometimes, I feel nothing but the warmth of the acupuncturist’s soft hands on mine as she places a needle in the meat below my thumb. Other times, there is a momentary bolt of pain as she spears my toe. I trust the pain. I suspect the pain is working, more so than the soft touch. Pain for pain.
But it isn’t enough: all the wine I do not drink, the mornings I do not sleep in, the minor humiliations, the strange administrations, all the small ways I have turned my life into another life entirely.
“The last time I took this stuff, I lost my credit card seven times. Seven times in less than a year. I was on a first-name basis with the bank,” I tell my neurologist.
“I know. I know it was bad.”
“I couldn’t remember anything. You, you’re the one who called it pseudo-dementia. I forgot names, my friends’ names.”
My bottom lip puckers, an embarrassing, babyish tell.
“Jezzica,” she murmurs.
“It’s not the weight loss or the hair loss. It’s the word loss.” I took a breath. “I write. I’m a writer.” I say tentatively, testing the firmness of the words.
Are my words really lost if I’m not looking for them?
I have one child. I’ve had more. What is one eight-week-old fetus? What are two? What if they were wanted? What if I were secretly unsure? What if we discussed names that first time, the night before I began to bleed? Eight weeks out of 40 is .2. I’ve had 1.4 children.
In the parking lot of my obstetrician’s office on a clammy, grey morning, I press my forehead to the steering wheel of my Honda Civic. The diaper hastily shoved down my pants crinkles. I suck in the air conditioning. I dry heave.
“These things happen. It wasn’t anything you did. You can certainly try again,” the OB droned.
Some days, I greet my husband at the door when he arrives home from work with a smile and a cheery “How was your day?” only to melt into quiet whimpers when he pulls me in for a hug. His heartbeat sounds like a familiar prayer: “Oh please. Oh please. Oh please.”
Equilibrium is elusive. My body is frustrated, determined to wait until I fulfill some motherly duty for the children I do not have. Within a month of my second miscarriage, I spend every other day under the pall of a migraine. My medications became less and less effective with frequent use. I declare too many sunny afternoons “movie time” just so my son will sit quietly on the basement couch, in thrall to Elmo, while I lie shipwrecked nearby, an ice pack wrapped around my head. “Please talk to your doctor,” my husband begs. Months later, I relent and make an appointment.
“Jezzica,” my neurologist says, leaning across her desk, patting the shiny mahogany because she cannot reach my hands, “The medication can be out of your system in three days. If it’s bad again, we take you off. If you want to try again, we take you off.”
Topiramate is not compatible with pregnancy. Or with breastfeeding. Or, in my experience, with coherent thought, with weighing decisions like, “Should I try again?”
In the loft above our bedroom, my husband and I keep revisiting boxes of baby clothes stacked inside the old bassinet, an infant bathtub, a perfectly good breast pump. We question whether to keep, sell, or donate the contents of this slipshod, hidden nursery. I’m over forty, and there are certain fears. Like chromosomal abnormalities. High blood pressure. Blood.
I bring my crying to a shuddering halt and wipe the corners of my mouth—an old nervous tick. “You’re right. You’re right. I should do this. I’ve felt bad for so long. I can’t try much of anything until I feel better.”
My doctor scratches out a prescription, tells me to call her, to check in.
I want to tell her that my son wants to know why he is alone and that I don’t know whether he wants a brother or a sister or just a mother who is mostly awake. I want to ask her: when, exactly, will everything be better? Should I check back in a week? A month? How many pills exist? How many tries?
I call my husband “Taco.” He laughs like it’s a joke because his name is Shelby. But I was trying to say, “Shelby.” I smirk and feign a snicker, letting him think the joke was on him and not on me.
While waiting to catch the metro into Washington, D.C., I ask Shelby, “Do we have to transform at the next stop?” He stares at me blankly. “Transform? Transform? Is that right? No. I mean change. We’ll change at the next stop, is that right?”
“Do you mean ‘transfer’?” he asks, tilting his head, grabbing my hand.
In the parallel universe of aphasia, there is, indeed, a metro station where I become something else. The walls of my little home collapse, and instead of rubble, I’m left with a view—a strange and lawless landscape, terrifying and beautiful.
“You’re going to keep taking it, right?” my husband asks me.
“Yes. I guess. Yes. Probably.”
“You’ve had fewer migraines. By at least a quarter,” he points out. He’s a scientist. He doesn’t make guesses.
“A quarter? Really? Yeah. Okay then. Yes. I’ll keep taking it. It’s just, the, uh, the word thing bothers me though. It still really bothers me.”
“Maybe it’ll get better,” he says. I note that he does not dispute that “the word thing” exists.
“It’s been a while. I think it would have gotten better by now.”
He strokes my shoulder. He says nothing, knowing there is nothing to be said.
I eat lunch alone at a bar. I order the large pour of wine. My right temple throbs. My right eye feels bloated. Do I take a Vicodin with my Chardonnay? Do you know there is an opioid epidemic? Do you know there are drug mills masquerading as pain clinics? Do you know where I could find one?
The cobb salad is terrible. How do you fuck up a cobb salad? Edamame and kale, for starters.
I taste a nearby diner’s cologne. I feel it poking my right eye. I hate him. I hate myself for sitting at a bar in a chain restaurant at midday on a Wednesday. Alone.
I should be writing. I mean writing something better. Not this dollar-store Sylvia Plath, pity party script. I pay a therapist $120 per week to tell me that I need to change my “self-talk,” that I hold myself to an impossible standard, and, considering my health, I’m a great parent and a dedicated writer and wife. More or less.
How delicious it would be to tap Cologne Man on his shoulder and say, “I hate you.” And then fall to my knees, sobbing into my hands in despair that I don’t understand God’s plan and sometimes suspect that there is no plan. I find myself thinking that, yes, Hell is real. I wonder, if everything happens for a reason, then what have I done?
My meds are stashed in a miniature breath mint tin, which can fit in my wallet. I’m very discreet. As it turns out, I am also out of Vicodin. Cologne Man should run.
They are playing “Carolina In My Mind,” and even though I couldn’t care less about Carolina, North or South, I want to cry. I want to be somewhere peaceful. I want James Taylor to hold my hand while I pour my wine in Cologne man’s lap. Oh, James Taylor, I have a Carolina in my mind too, but it hurts.
Near my home, a trail winds through woods then meadows then wetlands. On the first warm day of spring, my husband and I walk the trail with our five-year-old son, Samuel. We are alert to the rustle of wild turkeys or bauming bullfrogs, to muskrats skittering through the cattails. Park life is stealthy. We can hear it. We can feel it. Rarely can we see it.
Spring is the hardest time. Migraines roll in and out as regularly as the tide. My acupuncturist explains that my yang qi is rising, energy bubbling up toward my head. Like Old Faithful, I think to myself.
“Do you feel particularly motivated?” she asked while sinking a needle into my big toe.
“There’s a lot I want to do,” I offered. “A lot.”
My family veers off the paved pathway onto a dirt trail snaking past scummy ponds and through dense brush studded with cocoons. As my son marvels at a wriggling mass of caterpillars cupped between two branches, I hear a knocking, urgent and rhythmic. Then a flash of red and the black expanse of wings.
“A woodpecker,” I shriek. I leap and whoop down the footpath to stand below the husk of a tree to which the bird clings, banging its brains out.
We three stand at the base of the tree for a few moments, each in our own thoughts.
“Very cool,” my husband says.
“It’s a big bird!” my son adds.
“I’m done watching now,” I tell them and turn away. I am the tree. And pain is the thing with feathers that never stops at all.
Maybe I said, “I’m sick,” or maybe, “It hurts.” But the memory is silent. Strangely lit, vertiginous, and silent.
Baltimore’s Inner Harbor, still a novelty in 1983 with its fresh tourist construction, pulsed with Christmas lights. My family stood near the open-air amphitheater, where, in warmer months, we could watch jugglers or musicians work the crowd for tips.
Did we go to meet Santa in his tiny glass house at the entrance to the new Harborplace Festival Town Center? I only remember the ebb and strobe of the lights—white, red, white, red supernovae, dimming and throbbing.
Half-blind, I ran for my mother with my arms thrown straight out in front of me. My jaw was wide. My eyes were wide. My skull so heavy. My mother yelled something to my father as she grabbed me by one shoulder, drawing her free hand across my clammy forehead. My father moved briskly in my peripheral vision to scoop up my younger sisters.
The pain. The pain. The pain. I’d skinned knees and crushed fingers before. For a young kid, I’d endured vaccinations with stoicism. But this pain was an unfair pain, caused by nothing. It did not wax or wane so much as gain specificity. A half hour before, my neck and head merely ached, but over the course of minutes, the pain had gathered behind one eye, like a swarm.
I pawed my mother’s pant leg, saliva filling my mouth. Suddenly, my mother looked to be twenty feet away, though I could see my fingers still hooked through her soft, denim belt loops. I felt certain that my body had disconnected from my arms. Perhaps my arms were not my arms at all. Some strange force was sucking my torso backward, away from my imposter limbs. “This is dying,” I thought.
Instead, I threw up. It was as though the dam had burst behind my eye, leaving me awash in both misery and relief. My mother picked me up and ran for our Chevette. I was seven years old.
My son Samuel (“he who is told by God” or “he who is heard by God,” which are two sides of the same bright coin) loves light: light that blinks, light that casts shapes on his ceiling, light that changes color.
“Mommy, watch!” he shouts, waving a pulsing light saber in front of my nose.
“Buddy, you know the rule.”
“No lights.”
“Right. No lights.”
“Because flashing lights make your head hurt.”
“Yup.”
Sam stinks like sun and shoes. He needs to be wrestled into a bath. He needs to be reassured because his mother wears that pinched, drained look and because the day is done. His thick hair falls in a dark clump across his forehead. I want to eat him whole.
“Mama?”
“Yes?”
“Do you want me to tell you where your migraines come from?”
He settles down on the edge of his small bed, dropping the lightsaber to the carpet, peeling off his dusty sneakers. I lean back in the old glider, the soft, green chair where I once nursed my baby. I smile at him.
“Tell me.”
“Once upon a time, you had a dream, and in the dream a big light came flashing down. All white and purple.”
“Like fireworks?”
“No, no, Mama. Like stars that made you blind.” And he hides his eyes behind his small, perfect fingers.
Jessica Rapisarda
earned her MFA from Hollins University. Her poetry, essays, and literary reviews have been published in jubilat, Grace & Gravity, The Potomac Review, HuffPost, The Good Men Project, and more. She teaches writing at Northern Virginia Community College, where she is on the editorial board of The Northern Virginia Review and on the board of the Professional Writing Certificate Program. You can read more of her work at jessicarapisarda.com.
Art by Sara Potocsny
“Drawing 11”
Ink on multimedia paper
Sara Potocsny is a poet, artist, and violist living in Brooklyn, NY. She has work published or forthcoming in Hobart, HAD, Radar, Rejection Letters, Perhappened, No Contact, and elsewhere. You can find her on twitter @sarapotocsny and instagram at @spotocsny.