The Sacred Disease
It begins with a cookie. We are in our kitchen in Indiana and one of my twin daughters, Estelle, is begging, crying, reaching toward the cookie I won’t let her have. Suddenly she stills. She’s still looking up at me, mouth ajar, but no sound escapes.
I grab her at the waist and pick her up. A second or two passes and her head slumps onto my shoulder. Her arms and legs clench forward, and my three-year-old daughter rocks with convulsions, seizing me in her grip. Estelle clenches her jaw and grates her teeth. As her head jerks, I softly say, “Mommy’s here. Come back to Mommy.” I hold her as tight as I am able. “Mommy loves you. It’s okay,” I say, to both of us. She releases her bladder and I welcome the warm flood of her insides. Her eyes dart back and forth beneath the half-mast of her eyelids, and that’s how I know she’s still seizing.
Her body is not yet her own.
Aunt Sandy lost her son David to Lake Michigan when he was sixteen years old. Her husband had died of a heart attack a few years prior, and she’d raised David alone with the help of her two sisters, my grandma and aunt. Of the sisters, Aunt Sandy was the pretty one with her blonde curls, laughter as light as cotton candy.
David had been at the beach in South Chicago with his friends; he’d never been a strong swimmer, but he and his friends waded out, goofed around like any other group of teenagers. It was toward the end of summer, and I imagine it was a hot day, sun glinting off the lake like blades. There were girls nearby they were supposedly eyeing. As they waded deeper, the heavy fabric of his swim trunks billowed with the force of each wave.
He wasn’t tall, but girls found him cute and he liked flirting. Most of what I know about that day comes from my grandma: the girls, the beach, his friends, the drowning. He picked out the best-looking girl of the bunch, held her in his sight and smiled. I’d like to think he thought about jokes he’d offer, things he might say once he was on land.
So I imagine the tide pushed him further, his friends suddenly far away, laughing about something or other. What’s so funny, he thought. He dug his toes downward, searched for the sandbar. It had been there all along. He swept his legs from side to side, searching. Then harder, kicking his legs in every direction, twisting his torso—where was it? The bottom was gone.
He punched the surface. Grew disoriented. Something rammed his throat. He could still hear some far-off cracker of conversation. Where were his friends?
A wave pummeled him.
As he swallowed water and flapped his arms, his mother was at work, canning soup at the Campbell’s plant in Chicago. But he didn’t have time to consider her. She didn’t see him struggle to keep his chin up, hands two useless knobs of splash. She did not look up from a blanket on the shore, scan the horizon, and glimpse the oval of his forehead disappear.
They say that Aunt Sandy was different after David’s death. More distant—spacey. My grandma used to take my brother and sister and me to visit her at the McDonald’s in Calumet City where she worked the fryer, dropped baskets of French fries into vats of oil that snapped her skin, left tiny red spots on her wrists. She wore a paper cone hat, a navy polyester jumper with a zipper down the front. My grandma would write our order on a hand-sized tablet before leaving her house: quarter pounders with extra pickles, small soft drinks without ice, fries. We never called out to Aunt Sandy while she worked but quietly took our lunches to a table with attached swivel chairs and ate. Later, she would walk up with a broom and a dustpan and brush the crumbs from beneath our feet. Sometimes she would go back behind the counter and talk with her manager, and he would let her go on break. She’d sit beside my grandma with a Styrofoam cup of coffee. They’d both take off the lids, let the steam escape as they chatted, Aunt Sandy’s voice as hollow as a plastic toy.
Estelle has seized in the doctor’s office when they tried to measure her height. She has seized during a check-up when a doctor looked inside her ears with an otoscope. She has seized in the hospital, at the neighborhood park next door, in our kitchen, her bedroom, our bathroom, on the living room floor in the summer, while she was fighting a cold in the winter, and once on Mother’s Day when I lifted her from her highchair.
Her seizures began when she was thirteen months old. She’s three years old now, but because the seizures are caused by breath-holding spells, the doctors are hesitant to prescribe anti-seizure medication. I do, however, carry with me at all times a pre-filled syringe with medicine that can halt a seizure by relaxing her body. The major side effect of it is that it also suppresses her respiration, making it difficult for her to breathe; every application of Diastat has resulted in a trip to the ER.
We have visited the ER many times.
I keep Diastat vials in our kitchen cabinet below the shelf with the cookbooks. Two vials are in my purse; another vial near the glasses, and later, there will be two vials in the preschool classroom where Estelle spends Monday and Tuesday mornings.
Before she attended preschool, her three teachers visited our home to meet Estelle and her twin sister, Josie. While the girls crouched on the floor with their Dora figurines, the teachers asked me if there was anything I’d like to tell them. Only then did I remove the Diastat from its paper bag, break the seal on its plastic carrier and take out the syringe.
I passed it to each teacher and explained that if Estelle had a seizure that lasted more than two minutes, they needed to administer the Diastat. I told them how to place her on the floor on her side, pull down her pants, bend one leg forward, dip the syringe into the lubricating jelly, and then insert it into Estelle’s rectum while counting to three. After plunging the syringe and holding her rectum closed, count to three again, and then remove the syringe. I asked them to hold Estelle as they waited for the paramedics to arrive.
The lead teacher opened her mouth in either shock or fear—I’m not sure which. A spackle of spit stretched the corner of her lips. I waited for her to say that she was sorry, that perhaps another school would be a better choice for our breath-holding daughter.
Instead the teachers slid onto their knees and shook the girls’ hands, told them they looked forward to seeing them in preschool. I wiped my wet eyes, overfilled with gratitude.
The Greek word “epilepsia” means “to take hold of,” “to seize.” The Babylonians once considered it punishment for some wrongdoing or sin, as revealed on tablets dating back to 2000 B.C. that list several types of seizures, each of which is associated with the name of an evil spirit or god. It wasn’t until Hippocrates published The Sacred Disease in the fifth century B.C. that he debunked the idea that epilepsy was a scourge on a soul, declaring it a brain disorder instead. He didn’t believe “that a human could be invaded by a god, the basest by the most pure.” He recommended physical treatments, and even surgery, and stated only if the disease became chronic was it incurable.
Early treatments for epilepsy advocated by Hippocrates include surgical blood letting or skull trephination, in which a hole is drilled into the skull to remove bone. Still those who experienced seizures were also often thought to be possessed and were confined to special groups or shunned altogether. Initially, people with epilepsy tended to live in poorhouses, state institutions, or crowded jails. The Ohio Hospital for Epileptics, established in 1893, was the first seizure colony in the United States. There, treatments included special diets and hydro therapeutics—hot and cold baths. At the same time, there was a growing acceptance of eugenics. It was thought that children who were “defective”—those who suffered from seizures, but also those who were poor, feebleminded, or sexually promiscuous—should be segregated during their “entire reproductive lives” to limit increase of “their kind.”
Aunt Sandy took barbiturates for her seizures but always seemed to forget them before a holiday gathering. One Thanksgiving both my grandmas, my mom’s brother and his wife, my cousins, all of us were seated around folding tables we’d arranged in a large rectangle in our wood-paneled basement. Pilgrims posed on paper tablecloths, and earlier we had helped Mom make centerpieces of gourds and Indian corn, red globe grapes, for color. Maybe I was eating my stuffing or on my second helping of cranberries—I don’t recall the food except for the clink of silverware and someone screaming, “Sandy!” When I looked up, I saw Aunt Sandy slumped to one side in her chair, arms jerking rapidly, eyes slitted and unfocused.
“Sandy!” My grandma scolded her, voice booming amid the sudden silence. “Sandy, you forgot to take your medicine!” Mom sprang into action. She slid Aunt Sandy out of her folding chair and onto the rug, put her on her side as her chin twisted into the ground, knees clenched up. Arms shuddering. Her shirt had ridden up, exposing a white band of flesh; a dark pool soiled her slacks. Mom patted her arms, remained at her side, cooed, “It’s okay. You’re all right.”
I could see a line between where the makeup on Aunt Sandy’s face ended and her neck began. I stood there and held my arms. Didn’t know what to do. “It’s okay, Sandy,” said Mom. She kept a hand on Aunt Sandy’s hip as she continued to seize, never letting her hand veer from my aunt’s body.
I lost my appetite.
I waited for a moment when the adults wouldn’t be watching and I could slip upstairs to my bedroom and call one of my friends. It was all so disgusting. The lack of control Aunt Sandy had for her body seemed connected to her polyester pants and the one-room apartment she rented next to Shaky’s Pizza, the avocado carpeting on the stairs leading to her door flattened into the shape of footprints. Inside, her parakeet scattered bits of birdseed and scat in his cage as his penciled feet pricked bar to bar.
When it was over, Aunt Sandy snored. Great sobs of breath racked her body right there on our basement carpeting; the moon of her back rose and fell. Mom covered her with the afghan we used while we watched TV, and for weeks afterward the blanket remained in a heap beside the couch like some diseased animal whose sickness we feared catching.
Sometimes children can have breath-holding spells during which their oxygen level drops so low that they pass out. On rare occasions, they can have seizures. Young children have a lower threshold for seizures than adults, which is why many childhood epilepsies are outgrown. Breath holding usually runs in families, and my mother can recall my brother at age two having a temper tantrum so severe that he held his breath and passed out. But he did not seize. If Estelle’s seizures truly are caused by breath holding rather than a neurological condition, her neurologist believes she will grow out of them sometime between the ages of four and six. If not, she will be diagnosed with a seizure disorder. And that will bring with it its own challenges. She may not be allowed to drive or play certain sports. Or maybe she’ll just be a little different, like Aunt Sandy. But I get ahead of myself. It’s easy to do.
The first thing Estelle does when a seizure ends is cry. One long fanged sob that comes from someplace deep inside her—it sounds crooked and unbalanced. It is the cry of an older woman. Aunt Sandy, perhaps. The echo of her long-ago agony, returning from work that summer day to find her house empty, a line of police cars outside her door, lights flashing but soundless.
Aunt Sandy never talked about David, but she kept a framed photo of him on a hall table where I liked to linger. In his high school photo, David’s cheeks were dimpled and he had his mother’s good looks, the kind that will age well, thick wavy hair, eyes fierce blue. For Aunt Sandy, alone in the apartment except for her parakeet, I imagine that David continued to exist.
How often did Aunt Sandy put her head down at night and return to that day, dreaming that she powered through the waves as if parting them, lifting David onto her hip and into the air to breathe, then fixing him to her side as she pulled them both to shore?
Or maybe in her dreams she was on the bed in the delivery room, bearing his weight for the last time.
But no—that was me.
They let me labor for twenty-two hours when the doctor announced that it was time. The amniotic fluid around Baby A—Estelle—was dropping, and they needed to do a C-section. In the OR they helped me onto a table, injected anesthesia between the knots of my spine, and told me to hurry and stretch out as everything from my waist down numbed within minutes. The room filled. There were two teams of doctors, one for each baby. There must have been fifteen-some people milling about in blue scrubs.
My husband, Pete, was near my head. They placed a screen just below my collarbone, so I couldn’t see anything. But I couldn’t stop smiling. Pete had already begun tearing up, moving nonexistent hair off my forehead and leaning over to kiss me. “How can you be so calm?” he asked.
“I just am.”
I asked him to tell me what was taking place on the other side of the drape, but he wouldn’t remove his eyes from mine. He was touching my face when the doctor announced, “It’s a girl!” and then I heard Estelle’s red-throated cry. Two minutes later, the doctor announced Josie.
Later, in our hospital room, we opened the blankets the nurses wrapped them in and counted their toes and fingers. We used our hands, which already looked so clunky and imperfect next to the girls’, to memorize the stems of their arms and legs. I didn’t say it, but I thought it: I am going to keep you safe.
There is a safety to holding Estelle as she seizes, to serve as witness. I can support the lolling head. I can catch the wayward limbs. I can watch her eyes slip back and forth without destination, just left and right, a beginner’s waltz. Afterward I can rock her in my arms. I can hold her as she sleeps. I can wipe her clean and dress her in dry clothes. Yet time passes.
Someday she will be in a car driving on a nameless highway. Someday she will have a boyfriend she will lean forward to kiss, her breath momentarily halted in anticipation, trickling out her nose as their lips meet; someday she might be at the beach, sunning herself with friends. She might enter the surf in hopes of cooling off and her breath might halt—the familiar spasms recognizing the foamy peals, the relentless turning over of water like breath itself; one wave followed by another.
A week after Estelle’s initial seizure and hospitalization, she still wore a faint red strip from the tape they’d put on her face when they intubated her, but it was fading, and I was hopeful.
We’d had a good day. I’d taken the girls to the park that morning and after a lunch of their favorite dumplings from Trader Joe’s, the girls perched on mini pink gingham armchairs while I sat cross-legged between them reading The Bear Snores On or Jamberry, books that caused them to grin as they pointed to the pages. But that day, after closing our last book, I said it was time to take a nap; I picked up Josie and headed to the girls’ bedroom with her.
As I walked on the wood floors, the early afternoon brightness, Estelle began to holler. “I’ll be right back,” I told her, my skin prickling. “I’m going to put your sissy in her crib and then I’ll be right back.” But Estelle had already begun crying. Her face fisted tight, that sudden reddening. I could have put Josie down to pick Estelle up. It’s what she wanted. Instead I curled my arm tighter around Josie. “We’ll be right back,” I pleaded, legs beginning to tremble.
I took a few more steps and Estelle followed me, her arms outstretched. “Please,” I said, my words wobbly. “Just let me put your sister in her crib.”
I could have put Josie down right then, but I didn’t want to. Josie smiled and laughed quickly. And unlike her sister, she didn’t hold her breath. She didn’t have seizures.
I was now behind the couch and still held Josie just a few feet from their bedroom door when I turned around, faced the room’s sudden stillness. Estelle was on the other side of the couch, near the seat cushions. I could see her face, her eyes glassy, mouth open, but no sound, and then she dropped away and was no longer upright, but on the floor, arms and legs jerking, jerking.
I put aside Josie and scooped Estelle into my arms, my own limbs blocky and stiff, mouth dry, and then it all came back to me, the sounds from just a week ago—the screeching ambulance making its way down 21st Street on its way to the Children’s Hospital of Philadelphia, the bank of windows in our third-floor apartment reflecting my own sorrowful face.
“I’m sorry,” I said, thinking of Estelle in the hospital bed with the tiny green gown that snapped at the shoulders, nodes stuck to her thin chest. I’m sorry, I thought, and counted one thousand one. One thousand two. I went over in my mind the steps to administer the Diastat, remembered how immediately after Estelle’s hospital discharge we drove to the CVS on Walnut Street and when the pharmacist said it would take two or three days for them to get the Diastat, I began to cry. The pharmacist, his kind expression, I’m sorry, he said. And meant it.
I’m sorry, I told Estelle. I’m sorry.
Status epilepticus, the life-threatening seizure Estelle initially experienced, carries with it a high rate of mortality and neurologic deficits. “You know we almost lost her,” Pete said, once. “We almost left Philadelphia as a family of three.”
I don’t know what the future holds for Estelle. Her seizures are growing less frequent and when they do happen, they are shorter in duration. We’re trying to teach her to verbalize her frustration rather than hold her breath. Some days are better than others. But at the park beside our house, I train myself for whatever is yet to come. If Estelle is hanging on the bars, swinging her legs back and forth, I watch her from the cement walk, a few feet away. When she is on the swing, begging to go higher, I push her. Her curls spring in the air and she grins, says, “Higher, Mommy. Higher!” I push her, note the solid grip of her hands on the chains—she flies.
I let her go.
Melissa Fraterrigo is the author of the novel Glory Days (University of Nebraska Press, 2017), which was named one of “The Best Fiction Books of 2017” by the Chicago Review of Books as well as the story collection The Longest Pregnancy (Livingston Press, 2006). She founded the Lafayette Writers’ Studio in Lafayette, Indiana, where she offers classes on the art and craft of writing. Melissafraterrigo.com