The traces of paganism. The traces of witchcraft. My mother the sorceress, who filled her art with goddess figures, feminine forms. Life-sized stained-glass windows of fleshy women seated meditatively in astral landscapes, or giving birth in verdant forests and overflowing streams. These were our protectors, she told me when I was a child: these were the women who would keep us healthy, keep us safe, free us from the curse.
27
My mother’s wound ran like a cavern, pink and bottomless, down the length of her torso. It seemed to wait, embodied, for the constant care it demanded, like a child. Sterilization and wound packing. Drainage of the viscous yellow pus it secreted, a process performed by a thick tube attached to a bag my mother let flop at her side like an old-fashioned pocketbook. Because of the wound’s proximity to her thin and damaged intestine, Mary was no longer allowed to eat. She would be fed, it was decided, via TPN, a permanent IV that would pump thousands of liquid calories into a central PICC line in her arm.
The wound was part of my mother, but we hated it. We knew if it became infected, she would die within days. So Judy and I tended to it like an undetonated bomb, donning masks and gloves, peeling open packets of sterile gauze and swabs we folded, like linens, into the basket of my mother’s open belly. The skin inside descended in shades of pink toward her internal organs, and I was every time amazed by what I could see of her, how I could look inside her like a clock and find what made her tick. Judy and I performed each step with precision, chatting all the while to distract my mother, who glazed over as we worked. She could feel us inside her, she said, but there was no pain.
After the saline and gauze came the corseted bandage, which adhered to the skin on either side of the wound and laced up the middle, stitching up and tying off in bows the area of the incision, which formed a thick mound when covered over by layers of dressings and wads of sterile gauze. We bought yards of colored ribbon to replace the medical shoelace it came with, and cinched the corset with baby blue, rose-petal pink, polka dots, and glitter, all of us giggling as Judy and I threaded the baby blue through the bandage and primped and patted the neat package it made.
As the wound healed and food was reintroduced, new catastrophes arose. The weeks blurred with them, and emergency became the norm. We lived around it, in a constant state of numbness and flight. Of principal concern was my mother’s “short gut syndrome,” a complication of her bowel resection, characterized by chronic diarrhea and compounded by the removal of her TPN PICC line, which had threatened infection. Without supplemental nutrition and because of the diarrhea, my mother shrank, became bobble-headed and skeletal. The gastroenterologist told us that her body was now eating the thin layer of muscle between her forehead skin and skull. “This is what happens with people who are starving to death,” she said.
“But she’s been eating everything,” we said, and by that point, it was true. Although she didn’t always want to, my mother was devouring three times the amount of food she might otherwise consume. Brownies and beef. A whole bag of chips. Anything she wanted without the guilt. The irony was lost on no one. “Careful what you wish for,” Mary said when I returned from the store with mountains of food, diapers, hemorrhoid cream.
Mary may have escaped the guilt of her gluttony, but I didn’t. I felt guilty about everything: the extra hour I slept in, avoiding her care. The food I ate by her bedside, a necessity that felt phony, a performance designed to show her the self-care I was taking. I felt guilty for feeling annoyed by her neediness, which weighed upon me. Some days, I regarded her as my unwanted child. I felt guilty about how badly I wanted to escape her, as if her illness were my illness and I could outrun it. I imagined packing up my car and leaving. I daydreamed of an open road stretched before me, with California at its end, all pink and blue and desert brown. I dreamed of books and words. I wanted a story of my own and resented her illness for rewriting mine.
I had applied to MFA programs out west the previous winter, just before the back surgery, long before I knew of all the complications to follow. When I received the acceptance letters, knee-deep in medical crisis management, I’d already decided not to go. But I drove her to appointments and imagined how I might keep my foot on the gas all the way to the West Coast. A part of me relished the catastrophes I’d create in doing so, the fantasy tempered by the knowledge that I never would. Instead, I drove Mary to radiology, where a new, more permanent PICC line was implanted. They were going to try to bring her weight up, to keep her alive. The Hickman PICC bypassed Mary’s arm veins and fed into the jugular vein that ran down her neck, twin lumens dangling from just below her left collarbone, two tassel-like lines to her heart. After its placement, you could see the silhouette of the line where it snaked along just underneath the skin.
My decision to stay and caretake was settled, I thought. But Mary insisted it wasn’t. “Absolutely not,” she said. “You’re going to CalArts, and I’m going to help you move.” She was splayed on the couch, TPN pumping away. She was already gaining weight. Her cheeks were rosy. Judy was in the chair beside her. “Oh, you’re going,” she said. The TV was muted in the background.
“I am?” I said as Mary reached for the remote.
The two women nodded in unison, almost casually. My mother unmuted the TV because Jon Stewart was starting, and there would be no more discussion.
* * *
In the end, I went to California. Because Mary and Judy willed it. Because I did, too. In the end I took my mother with me, because Judy had gone to Florida and the wound still needed dressing, but also because, more than anything, she wanted to help me settle. She wanted to return to mothering me, and I wanted to let her. “I just need to know you’ll be all right,” she kept saying as she rushed to heal, to ready herself for the road I’d dreamed.
Each evening of our road trip, she lay on her back on a queen-sized motel bed and watched as I set out the sterile sheets, the tape and alcohol, the saline and Q-tipped sticks, before washing my hands for the third time in three minutes, returning and unwrapping another set of sterile gloves. The wound closed further each day, the skin around it sealing onto itself until eventually only a teardrop-sized spot of unclosed skin remained. Into this hole I shoved wads of saline-soaked gauze, sterile swabs, and Betadine-brown Q-tips. I did this until, eventually, no amount of force could insert the Q-tip into the hole, the last little space of open wound set just below her sternum. We whooped with joy that night, Mary sitting up on the edge of the bed, looking quizzically at her torso while I jumped up and down, chanting Magical Mommy.
Still, there were bad days, days when she slept for hours in the passenger seat, then woke suddenly, pulling on my sleeve to stop at the nearest toilet. “You shouldn’t have come,” I said to her one night after a particularly trying drive. “I needed to,” she said. “I need to see the Grand Canyon.” As a girl, she said, she’d gone with her parents, ridden a mule to the very center of the earth, watching the back of her mother’s head as they descended into the coral chasm. She’d always wanted to return, but for some reason, she hadn’t, not even on that camping trip with my father and me. So we took a long way through Arizona to spend a night there. “It will be the most beautiful thing you’ve ever seen,” she kept saying as we drew nearer, promising us both.
We arrived with the sunset. She stood on the very edge, leaning on her cane, looking out over the open walls, the revealing shades of pink and veiny lines of white threaded over bare rock. When I came to stand beside her, we teetered, side by side, looking into the cavity of a body we both knew.
We passed into California the next day at dusk, crossing the state line with the sun going down behind plots of land peppered with cacti and Joshua trees. By nine we’d found the apartment Judy and I had rented, fully furnished and for too much money, over the phone just weeks before. We slept deeply in my new bed that night, each curled on our separate side.
The next day we bought plants for my little patio. The day after we found the closest spot for a good wa
lk. By the time she left, flying back to Connecticut, where she’d be on her own, the wound had fully closed, leaving only a thick strip of knotted skin running down the length of her torso. “Good-bye, my darling,” she said as she climbed from the car. And then she was gone, and I was without her. And then I set about learning how to be alone.
As the months passed, I met friends, went to class, practiced yoga every evening. I wrote. I met Jon, who, six years later, would become my husband. From the center of my bed, I closed my eyes and listened for the horn of the late-night train, which called to me as it had when I was a child in that house by the water, falling into dreams in the blue bedroom my parents built for me. I felt safe in California. Safe enough to feel the fear I couldn’t embody in the thick of my mother’s illness. Without her, it was as if all the concern I had for her body transferred magically to my own. I thought of my physical self as delicate and unpredictable, preparing to fail. I saw the potential for unexpected death everywhere. I imagined earthquakes cracking the ground, opening cavernous holes to swallow me whole. I drove down the 405 picturing the scene of an accident I hadn’t yet had, how my blood might splatter and stain. I imagined tumors, threats, heart attacks. The more I thought of this, the more my vision blurred and blinded me. Migraines arrived for the first time in my life. At a routine dental appointment, the dentist said my teeth were worn to stubs from clenching and grinding in the night. “I’ve never seen it so bad in someone your age,” he told me. “You need to relax.”
“I’m trying,” I insisted, defensive. He looked skeptical, as if I were willfully diminishing myself. “I’m not crazy,” I told him.
“I know,” he said, sounding dubious.
But I believed myself. In survival mode, that was all that mattered. For all the catastrophe I imagined befalling me, I knew it was always imminent. I understood what other people didn’t. For this I refused to apologize. I still refuse. I think of my mother, apologetic for her body, embarrassed by its short gut, the lumens and ports it bore, a cyborg’s appendages. She so often saw her body as a failure. When cancer came she saw her physicality as cursed; when my father’s affair began, she saw it as excessive, too busty or curvy, too scarred to please him. Her body rarely fit the narrow category that culture had assigned to it. But to me it was always magical: I came from it. I watched it sicken and survive, heal despite complications, deep wounds. Later I watched it die. And every process was beautiful.
* * *
Somehow, two years passed. Mary’s tumors stayed small and symptom-free; my headaches disappeared. But when Jon and I moved to Texas and I started a PhD program, they began again. “No wonder,” my mother said. “It’s all about place.”
I called her one afternoon in May. It was a hundred degrees outside already, and I’d just climbed in the car after an hour in the sun. I propped the phone between my chin and my ear, waiting for her answer, adjusting the air-conditioning to blow on my face, burning fever hot like moonstone, from the inside out. She picked up, and we talked about her friend who was in hospice. “She’s dying,” my mother said. She sounded confused, and I could hear her breath, short and labored and one thousand miles away. I was driving by then, asking for details through the wire of my headphones. But then I began noticing the skin of my left cheekbone, how it felt tired and shocked, as if stung. Soon, this feeling spread into my ear, down around my jaw. My heart began palpitating. I said nothing and considered driving myself to the emergency room. But I ended the call instead. “I should go,” I said. “It’s not safe.” She agreed, and I was grateful. I didn’t want to let on that I knew I was in trouble, and I didn’t want her to tell me to get help, then worry when I put it off.
At home I looked up my symptoms online, convinced I was going to have a heart attack or a stroke. I’ll go to the doctor, I told myself. I wrote myself notes. Make an appointment, they said, with seriously, do it in parentheses. But I was frightened, scared perhaps that I’d go and something would be wrong. I was scared that it would be my fault, the result of negligence, too much sugar-free Jell-O during my college days, or a history of illness, patterned on my insides. I was scared, too, that I would go and be told it was nothing; scared to then push and pressure, become bitchy and hysterical the way I knew I’d need to, to save myself.
Weeks passed. And then one day, Jon and I were side by side at the Houston gay pride parade when I saw splotches and felt faint. We returned to the car and started home.
“You’re dehydrated,” he said.
“I need you to take me” was all I could say. “I need you to take me.” He held my hand as he steered the car, repeating heat exhaustion.
“Hold on hold on hold on,” he said, his face blanched, unsure of what to make of my behavior. I was sobbing, doubled over in the passenger seat. In our six years together, he’d never seen me this way.
“My heart is exploding,” I told him, and I meant it. I was rubbing my face and arms, trying to press them into feeling, but they were numb, immobile while the rest of me shook. “I’m going to die,” I said.
“Hold on,” he kept repeating, his words heavy, weighing me down. He pulled up outside the emergency room door, and I got out while he circled around to park. Inside I joined the line to have my vitals taken. The shaking worsened, and I wrapped my arms around myself to mask it, to make it to my chair.
In a thinly curtained exam room, a young doctor took my vitals, pressed cold EKG nodes onto my clammy skin. “You look healthy to me,” she said while the machine ticked and worked, printing out the rhythm of my heart in peaks and valleys. “Normal as can be,” she told me. She glanced at the page. “You’re having a panic attack,” she said. “This is how it usually happens for women, out of nowhere.” I left the room feeling foolish.
But a year later, I pushed my way into a cardiologist’s office because the palpitations weren’t subsiding, only to learn that the panic attack probably was a panic attack but also a symptom of a physical abnormality of my heart, something invisible to an EKG. “Nothing too serious,” the cardiologist said after I ran on a treadmill, lay naked on a table while she rubbed cold ultrasound gel on my chest. “But now you know where the palpitations come from.” Now I know. She told me it’s not uncommon for symptoms of this heart issue to be misdiagnosed as panic and anxiety disorders.
“But,” she added, “it’s also not uncommon for people with this condition to have panic and anxiety disorders.”
“Why is that?” I asked her, and she shook her head. “We honestly don’t know,” she said. “It’s just a documented symptom.” The line, she suggested, between the body and the mind is a watery one. But I knew that already.
Book III
28
After every potential cause and contaminant had been exhausted, after blood draws and EKGs and X-rays all showed no physical abnormality, DENT Neurologic Institute doctors issued the LeRoy girls a diagnosis: conversion disorder and mass psychogenic illness.
Conversion disorder, the doctors explained, is the literal transformation of emotional stress into physical symptoms. It’s an enmeshment of the body and the mind, the involuntary and voluntary. Inside the brains of patients with conversion disorder, voluntary neural pathways light up, but the physical behavior these pathways prompt is experienced as involuntary. It’s really quite common, lead doctors Jennifer McVige and Laszlo Mechtler explained—we see it all the time. Conversion disorder can be as simple as the stress headache one gets before visiting a troublesome in-law.
Mass psychogenic illness, however, is what happens when physical symptoms spread for no physically apparent reason, most often through groups of young women. Scientifically, MPI remains a mystery. But every year some high school somewhere is struck by an MPI outbreak, although seldom for a prolonged period of time, as was the case in LeRoy. Also unusual about the case in LeRoy was the history of severe stress and trauma in the girls’ backgrounds, which is rare for those who suffer from MPI, but not for those suffering from conversion disorder. MPI, it turns out,
isn’t common among trauma survivors, and I wonder if this is perhaps because, busy coping with their own pain, they have less immediate capacity to empathize with the pain of others.
Certainly I have known this to be true. Once, the sudden loss of my parents’ marriage, the sudden loss of the only reality I’d known, produced in me a pain so hot, I froze my body to keep from burning. Ice-bound and blue, I was unable to feel anything, for anyone, including myself. Later, thawed and giving care, I worked to stay sensitive to my mother’s plight. But even then there was only so much I could bear. To feel deeply for her would be to paralyze myself, and she needed me to stay capable and strong. So I learned, as I had during my adolescence, to power through the trauma like a robot, and save the feeling part for later. Even so, during my years as a caretaker, stress crept in. Before Mary’s illness, I was iron-gutted, headache-free. But in the final years of her life, migraines arrived like storms, bringing nausea and vomiting, the need for silent darkness. It was as if I were returning to the nightmares of my girlhood, visiting the darkness to prepare myself for a world without my mother. The panic attack that sent me to the emergency room convinced me I was facing death, perhaps so my mother wouldn’t have to. Twice in her final months I fainted, waking both times to Jon standing over me, yelling and shaking my shoulders. The first time I passed out, I hit my head in the shower. I woke to Jon, and a trail of blood running thin and pink down the drain, from the gash made where my head hit the porcelain.
JELL-O Girls Page 18
