After a week, the medevac arrived to take her to rehab. She gripped my arms tightly as I pulled her to an upright seat. Together we swung one of her legs, then the other, out from under the covers of her bed. She stood, holding my hands, looking out the door and down the hallway. “I think I can do it,” she said to the attendant, waiting in the doorframe with a wheelchair, but he apologized, told her he had to push her, and she sank into the seat.
I followed the van to Madison House, a one-story building in the shape of a horseshoe. It blended in with January, a bleak, unfinished circle. Inside, wheelchairs lined the hallways. It smelled of unemptied bedpans and microwaved mashed potatoes. Most of the patients, we discovered, were permanent guests over the age of eighty. “We can leave,” I told my mother, knowing that she couldn’t.
Her room was at the very end of a long pink hallway hung with silk screens of sailboats and teddy bears. Her roommate, Meg, had just had her uterus removed. “Happy to have someone to talk to,” she said. But my mother wanted nothing to do with her. Each day when I visited, she’d turn in bed to face me, wincing as she went, then roll her eyes, stick out her tongue, and point her thumb backward, through her torso, at Meg. “She is very fat,” my mother would whisper when Meg was in the bathroom. “Mom,” I’d say. I was often angry with her, exasperated and embarrassed by the drugs’ coloring everything she said, their effects blanketing her mind in mean hopelessness. “Everything hurts,” she repeatedly said. “Everything is a mess.” The bathroom was flecked with the drops of dried blood Meg leaked with each step she took. She often left the urine hat on the toilet. “It’s disgusting in here,” my mother said, holding up her hands as if anything she touched would contaminate her. She told the nurses, loudly, how disgusting it was. Meg never seemed to notice. She talked about the weather, her favorite TV shows. She gave too much advice. “Can’t she see I don’t care?” my mother said. “No,” I said, “but I can. You don’t seem to care about anything.”
She was getting worse. She wouldn’t eat, and the nurses were exasperated. They removed her untouched trays, the tinfoil-topped containers of Jell-O I jokingly bribed her with. She craved only wonton soup, she told me, so I drove to First Garden every day and returned with a hot container of broth and dumplings. I carried the soup from the car, wrapped in my jacket, holding it bundled like a baby through the stinking hallway to her room, where she was staring at the clock, into it, past it.
She was calm the night before she left. Meg was already gone, readmitted to Yale because she couldn’t stop bleeding. She was frightened when she left, and my mother was tender and concerned, an improvement, I thought. “Not you,” I told her after we’d watched Meg’s gurney disappear through the door. “You’re going home.” She closed her eyes and smiled, squeezed my hand. “One o’clock is the earliest we can discharge her,” the nurse said when she stopped by the room to remove Meg’s sheets. “See you at one,” I said to my mother when I left, kissing her cheek.
When I arrived the next day at 1:15, she was sitting on her bed with her head in her hands. “Hi,” I said, and she looked up, tearstained. “Where were you?” she said. Her words were accusatory, desperate. “I thought—” she said, “I thought something happened to you. I imagined the worst.” She began to cry in earnest, and I went to her side. “Get me out of here,” she said, rocking back and forth, her face in her palms, “please please get me out of here.”
In my memory I run behind her wheelchair, push her out of Madison House and over to the car feverishly, like I am stealing her away. I throw her into the backseat and peel off, home free. I know, however, that I walked her slowly, even as she told me to hurry. We passed the parked wheelchairs, the doors flung open to dusky blue rooms and flashing TV screens. I told her Get ready when the automatic doors drew apart to let us pass and the January cold washed over us.
I picture myself that day, so measured and calm, and wonder what I could have done better. What would have happened if I’d truly run behind my mother’s wheelchair? Broken all the rules, screamed fuck you like a wild woman to the herd of white-coated doctors lurking in the hallways? Would doing so have given me the power to be a better caretaker than I was? I wanted to be my mother’s protector, a sorceress capable of healing her wounds. And maybe I was. But most of my memories of my mother’s illnesses are of my own childishness, the numb annoyance that covered over my fear.
By March, Mary was walking again, eating normally, looking forward to getting back into her studio, getting back to her memoir. When the time came for a routine CT scan, she followed the familiar drill, drinking the contrast, lying perfectly still while her body was fed through the doughnut-shaped machine, and following up the next week with her oncologist, Dr. Saif.
It had been three years since we’d sat in that surgeon’s office while he shook his head, saying there was nothing to be done. And in that time Mary’s tumors had stayed small and steady, held there by shots, or spells, or both. So we’d become accustomed to our visits to Dr. Saif as lengthy routines always resulting in remarks on how miraculous it was that the tumors hadn’t grown. “Just stay the course,” we’d grown used to hearing, as a team of harried interns waved us out the door.
These clipboard-laden interns were everywhere at Saif’s, always preceding his coming, striding into the room where we waited to report to us Mary’s entire medical history, as if they were informing us of what we did not already know. This time, however, the latest scholar read too much off his clipboard and revealed the bad news Dr. Saif was slated to break, then left the room while we sat in shocked silence, absorbing substantial growth. “Maybe he made a mistake,” I kept saying while my mother silently shifted in her chair, hands on her knees, waiting for Saif, who took another thirty minutes to arrive and confirm what his student had let slip.
The tumors were suddenly big enough to cut out, at least partly, and surgery was scheduled in an emergency capacity. Judy arrived to serve as co-caretaker. Richard came, too. We three sat together in the waiting room, measuring hours in cups of tea, trips to the bathroom, pages of the New York Times. A day passed. Judy and Richard went home to feed the dogs, and I waited alone, the only person left in the communal waiting area, for the verdict. “I scraped tumors off the abdominal scar from 1992,” Mary’s latest surgeon, Dr. Cha, said when finally he appeared. “I ablated three from the liver, resected a good portion, and got another two.” “Swiss cheesed her,” I said, and he looked confused. He told me there were also tumors nestled in her bowels. “I resected what I could of all that, too,” he said. When I thanked him, he told me it was my responsibility to know that they would come back. He’d de-bulked her, he said, so it could be many years from now—she could outlive them. But it was my responsibility to know.
The anesthesia wore off rapidly. They released her early. The strength she mustered to get herself home quickly waned. She began hallucinating and vomiting. She would not eat. The leaves on the trees outside her window unfurled in spurts of white-tipped green, the way they always do in Connecticut in the early summer. But the color inside was dark, indistinct. There were caterpillars in the drapery, she told me, monsters on the wall.
When she finally asked for food, it was as a starving person asks, desperately. I packed up my purse and walked the aisles of the colossal suburban grocery store, feeling small among the towering shelves of brightly colored boxes. I filled the cart with all her favorite sick foods: canned soup and ramen noodles, chocolate-covered raisins, boxes of pasta and saltine crackers, hunks of French bread, ginger ale. But she ate none of it, save for small portions of Lay’s potato chips from a bright-yellow bag she carried around the house with her as she began to walk again, her coming always marked by the shuffle of her slippers, the crinkle of the bag.
As she ate, her body shrank, regressing into something primordial. She grew scales. Layers of flaky dead cells that no amount of scrubbing and exfoliating could slough off. I took to sitting by her bed each night before she slept and working on her feet, tr
anslucent and bloodless, her legs, cold and peppered with tufts of unshaven hair. Touching her worried me. It was as if I were touching a drowned person’s body—dewy but cold and fish-bone white. Still I came, bearing pumice stone and lotions I laid out performatively, and filing away dead skin in unending layers, dustings of her on the bedsheets, the floor, to be swept away until tomorrow.
When Dr. Cha closed the surgery, he glued Mary back together. He did not bolt back into one the two sides of her stomach with three-inch surgical staples that leave scars like vampire bites, as the surgeons did after her second resection. Instead he slathered surgical glue over the edges of her open body and folded one side of her skin over the other.
“This will make for prettier scar,” he’d told me in the consultation room.
“What happened to her old scars?” I’d asked.
There were little tumors affixed to the old tissue like barnacles. “I cut them out,” he’d said.
Each day when I lifted my mother’s nightgown to clean the incision, there was only a clean strip of skin with a thin line zigzagging gracefully through the space between her sternum and her hips, like the hairline cracks over the face of an egg before the shell shatters and the yolk slips out.
This was 2009, two years before the outbreak in LeRoy. But the seeds of the girls’ illness were already taking root. This is something the media rarely covered in 2011, when the outbreak emerged in earnest. The girls in LeRoy had all been party to traumatic events several years prior to the onset of their symptoms. Two years before the outbreak in LeRoy, Thera Sanchez suffered a traumatic loss her family chose not to publicize. She began to twitch. But at the time, her symptoms were self-contained and subsided on their own, and nobody thought much of them. In February of 2009, Lydia Parker—another girl who in 2011 would alternate between paralysis and twitching, voicelessness and stuttering—reported that she threw a shoe at her father when he came home drunk. He then hit her in the head and backed her into a corner, where the two punched each other repeatedly. Meanwhile, Katie Krautwurst, the first LeRoy girl to develop symptoms, watched her mother suffer through thirteen surgeries.
But normalization is a peculiar human strength. After each trauma they experienced, the girls’ lives likely rebalanced themselves, seeking equilibrium by instinct. I picture them returning with relief to the routines of school and cheerleading, the inconsequential dramas circulating through their friend group. Maybe Katie and Lydia and Thera were emboldened, at least at first, by their hardships. Maybe they felt stronger for them, like they knew now how to handle every challenge life delivered; knew to numb out, talk on the phone, go to bed and wake to morning rituals. Maybe, like me, they leaned on those rituals. Maybe, like me, they even constructed new ones to control a world they already understood could change suddenly and without warning, trauma returning like prophecy, or curse.
* * *
June rain. I stood by the window outside the downstairs bathroom door, watching it fall, waiting to help my mother back to bed. The door opened slowly, and she came out, looking confused, her hands clasped over a patch of nightgown that was blood spattered—rusty red and orange over blue patterned flowers. “We may need to call for help,” she said, removing her hands as if revealing a mistake. “Let me see,” I said from my closed throat, lifting her gown to look at the incision, finding it split, red blossoms leaking out.
In the emergency room, Dr. Cha bent over my mother, wearing his dinner jacket, casually cutting through surgical glue and sinew and skin. I sat in a plastic chair outside and peeked around the drape, watching him move with studied indifference from scalpel to suction. Watching blood, flowing fast through thin tube, be vacuumed away, then swabbed with sterile gauze the way warm bread sops up last spoonfuls of soup.
He wanted to admit her, he said, so he could pump her with antibiotics and prevent another hematoma. A nurse named Chaps, with bleached-blond hair and a spray tan, gave me graham crackers and a juice box before untethering my mother from her wires and wheeling her bed out of triage and into a narrow hallway. “We’ll stick you here for now,” she said. Then she was gone.
As the night wore on, I lost time to hopeful waiting, a state of expectation in which hours sped past. My mother and I picked out a new McDreamy, and I occupied myself with trying to get his attention. When he brought me an unsolicited blanket, a juice box, a carton of Jell-O, his offerings felt like triumphs. Mary watched as I spooned the wiggling pink into my mouth. “I’m so hungry,” she said.
“This is gross,” I said, guiltily putting the carton down. Food was forbidden for her, a contaminant.
“No, no, don’t stop,” she said, always finding comfort in the sight of me eating.
“It’s okay,” I said. “Be right back.” I tossed the empty cup into the trash and walked around the corner, pretending I needed to pee but looking for more Jell-O, which I found and ate, two more cartons’ worth, to cover the hunger I imagined my mother felt.
* * *
Days later we went home with more stitches, but they would split twice more before Cha would say he’d had enough and settle on leaving a gaping wound, a watermelon-sized hole in Mary’s torso that had to heal from the inside out without contamination or infection.
“Anything else will just make more fistulas and hematomas,” he told me, manhandling the wound, poking and prodding it like something alive, a deep-sea creature. It smelled fetid and human and filled the whole room. My mother held her hands up and closed her eyes, as she would come to do whenever it was spread open before her. She didn’t want to see herself, and no one thought she should. This wound was the stuff of nightmares, and hers remained painkiller thick. At night she called for help, yelling, Judy! Allie! from her hospital bed in the sunroom, the same one we’d rented for the back surgery five months before. I’d hear her, then listen for Judy getting out of bed one floor below. If she went, I figured, I could remain frozen beneath the covers, staring at the ceiling, frightened of my own mother, who had become both childlike and monstrous in her illness. She gaped at me, a bottomless pit of need in a broken woman’s body. I did what I could to save and protect her.
I did what I could, but it felt impossible. I felt impossibly inadequate. I knew the price of hiding beneath the sheets, behind the shed; I knew the price of running. All my life I’d heard the story of the last time Mary saw Midge, the guilt she’d quietly carried and how it’d turned to sickness inside her. I wanted to avoid her fate, but there were moments during her care that I froze, unable to speak or move, unable to treat her with the kindness I wished I could muster. My mother was my protector. Now, faced with being hers, I felt small, unprepared, and, at times, irrationally angry with her for putting me in this position. I wanted her to reach for me, to hold me tight, to tell me she would be okay. But, lost in her pain and the hazy place she went to escape it, all she could do was frown, meet my eyes, and mouth ouch, both of us knowing there was nothing I could do to help.
On good days I tried, arriving at her bedside for pedicures or back rubs, walking her to the shower, where she sat in a plastic chair, holding her stomach and offering up one leg and then the other for me to shave. On good days I performed these functions as I would for myself. Her body was my body—the two of us were connected by an energetic umbilical cord always jerking me back to her even as I wanted to run, too afraid to face her gruesome form. Her body foretold a lonely future, but it was the only one I had.
26
The history of witchcraft, like the history of the domestic-science movement and the Jell-O it loved, is a history of women’s work and women’s relationships. It is a history of caretaking and healing passed from woman to woman. How to birth a child, how to keep a pregnancy, how to end one, how to heal a wound. It is a history of a sphere outside patriarchy that has fought for centuries to survive, depending on oral traditions, the imprint of past experiences on the XX chromosome, the knowledge that goes with it. It is the history of religion and capitalism, politics, violence, feminized pov
erty; the separation of women from their bodies and each other, and the persecution of those who attempt to reconnect.
It is the history of feminism, of Cixous and Clément’s “Sorceress and Hysteric,” a section of their seminal Newly Born Woman. In it they explore Freud’s famous hysterical subject Emmy von N., suggesting that she showed an inherent understanding, internalization, and performance of the female suffering that preceded her. Through hysteria, Emmy von N. “was able to repeat in the register of symptoms all the history written in feminine mythologies.” In other words, “the hysteric resumes and assumes the memories of others.” Put another way: the repressed survives in woman.
This concept of women as conduits—dare I say vessels—for the past is what my mother relied on when she blamed the sickness of today’s girls on LeRoy’s very own brand of patriarchy, “the Jell-O curse,” the great American company’s history of oppression, itself a reflection of the culture that loved it. All women, she always said, are privy to a collective female unconscious. The girls in LeRoy suffered in particular, she believed, because they lived beneath the weight of an insular and conservative community, one that was itself colored by Jell-O, which was itself cursed by its complicity in conforming and molding women. Today’s Jell-O girls “have been transformed into a theater for forgotten scenes.” They express in the present the repression of the past. They embody the disappointment of a life in which satisfaction stems wholly from a well-manicured lawn, a well-manicured hand, well-behaved children; checking and savings accounts well balanced and safe; a perfect Jell-O salad, so light and clean and wholesome.
But all is not lost! At least not for Cixous and Clément, who write that hope and healing stem from the sorceress, “who in the end is able to dream nature and therefore conceive it, [who] incarnates the reinscription of the traces of paganism that triumphant Christianity repressed.”
JELL-O Girls Page 17