On the 20th anniversary of my grandfather’s death from brain cancer, I lay in my room at George Washington University Teaching Hospital, waiting for the results of the MRI that would tell me whether my fall two days before had been caused by the same disease. And as I stared at the ceiling, one refrain repeated itself beneath the numbing fantanyl static.
Did I do this?
The day had started out normally enough. I had woken up early to allow for the metro ride from my aunt’s house in Vienna, Va. into Washington D.C., where the peace protest I was to cover was taking place, and eaten the breakfast that had become my usual prescription: oatmeal with cinnamon, craisins and soy milk with a little granola sprinkled on top, a big glass of water and a cup of coffee with a packet of splenda. I had packed my satchel bag with my wallet, camera, laptop, ipod, cell phone, one notebook and a handful of pens and set off for the National Mall.
The event was set to begin at 10 a.m. and my story was due by 4 p.m. That gave me just enough time to get to the scene, take a few interviews, snap some photos and hightail it to the nearest Starbucks with a good enough wireless connection to file remotely. As usually happened when I set myself a tight timeline, I got lost.
I knew the stop at which I had to get off, the street it would deliver me onto and roughly where the Mall was from there. What I did not know was which direction to walk down Pennsylvania Avenue once I emerged.
Subways always made me nervous. The crush of people moving like an amoebic tide toward an escalator that never seemed large enough to hold us all made my heart race, and I always found myself gulping like a fish whenever I surfaced. On this particular day, I let myself pause on the sidewalk just long enough to dial my friend Olivia, who was covering the same event, before I kept walking toward the nearest cross street.
“Olivia, hi. I’m on Pennsylvania, just got off at Foggy Bottom. Do you know which way I should walk to get to the mall?”
The succession of events that followed have been told to me over and over, at least once a year since. We sit in my parents’ suburban backyard and swirl the wine in our glasses, smiling at each other like survivors of a tragedy that became a funny cocktail party story. My aunt tells her side, because my side begins later, no one acknowledging that none of our accounts are completely accurate, because the only person who was there was bleeding on the sidewalk, her mind wherever ourselves go when consciousness is lost, or forfeited, depending on your perspective.
There was a dream. The sort we don’t remember when we are yanked back to reality, and harshly. There may have been god, and music, and salvation. But I don’t remember.
I have wondered ever since what I missed while I was lying corpselike on the sidewalk. What that means. If that means anything. Because everything, ever since, has been a desperate search for meaning.
I don’t remember passing out. I don’t remember the man named Mike who pulled over on a busy street to call 911 when he saw me fall backwards. I don’t remember the ambulance arriving, or Olivia running down Pennsylvania to find the bus screaming away while emergency responders hosed my blood off the sidewalk. I do remember opening my eyes to a man in a blue jacket strapping me onto a backboard, my eyes tearing in the sudden brightness. I felt more than saw him fastening a rubber brace around my neck as my nose filled with the smell of latex from his gloved hands. I remember being lifted into an ambulance and thinking foggily, as I grasped at the straws of a reality that had hiccuped me out into a scene I didn’t recognize.
“Do you know where you are?”
The EMT’s features blurred as I tried to focus on his face. He crouched near my head while three others fiddled with a blood pressure finger clamp, IV tubing and medical paraphernalia that creaked and squawked as we bumped down the street.
“Can you tell me your name?”
I have called you each by name.
Yes. I told him who the president was. The date escaped me. The year. The time. Where I had been going. The details that make up personhood. Independence.
The questions kept coming and he pinched my arm every few minutes. I didn’t know at the time that he had to make sure I didn’t lose consciousness until they determined how much damage I had done by splitting my head open on the pavement. I didn’t know anything, except that I wasn’t scared and I didn’t even realize that I should have been, because I was watching the entire thing like a television drama: Like it was all happening to someone else.
When the ambulance first arrived at the emergency room, it was like every medical TV show I had ever seen. The EMTs maneuvered the gurney out of the bus and through the sliding glass doors like an industrial ballet. Someone steered from the head of the stretcher; another guided the front as people in scrubs scurried out of the way. Two others flanked each side, their faces focused as they checked monitors and peppered me with questions.
Something had entered my bloodstream and wrapped my head in fog, so I answered them in slow motion as the world sped and jangled around me.
O positive. Blue Cross Blue Shield was my insurance. Yes, I had eaten breakfast. Yes, I drank water. No, there wasn’t anyone they should call.
My brain took snapshots as we moved into the bowels of the hospital. A nurse in turquoise scrubs glanced up from the center of a round nurse’s station. A dark-skinned man in handcuffs struggled against a police officer in a bulletproof vest with white block letters on the back. Glaring fluorescent lights shot my eyes with stars. The wheels on the gurney squealed, or maybe I thought they did because I expected them to, because they always did on TV. My brain filled in the blanks of what I saw with what I thought I knew, and I don’t know how seamlessly they fit together.
They wheeled me into a small, white room where a nurse prepared to draw blood from my arm while I tried to explain why she wouldn’t have any luck. Since I had been born three months prematurely with a host of medical uncertainties, one of my earliest memories was of skipping school to eat pancakes in the middle of the afternoon. I remember the syrup bottle was actually an old ketchup squirt bottle. It’s funny what we remember. I had spent the morning lying “like a statue” in buzzing machines, being poked with syringes and having a catheter inserted into a place that made me uncomfortable in a way I didn’t yet understand. I remembered pain in the way that children do, like it takes over the entire body until something else takes its place, like pancakes and a free afternoon. I had blood drawn more times than I could count, and no one could ever find a vein in my left arm. In what the still-coherent part of my mind realized was an increasingly slurred explanation, I tried to tell the nurse that, since the right arm was already occupied, she might want to try my hand instead.
“I know what I’m doing,” she said.
But the tube wouldn’t fill, and her fingers poked and prodded flesh that gave under the pads, but didn’t give any blood. She sighed, narrowed her eyes at me, like I was doing it on purpose, to spite her.
“What the fuck, Lizz?”
Olivia rounded the doorframe. She was laughing, although she didn’t look directly at my face.
“It sounded like you dropped the phone then some guy called back and said you passed out and by the time I get there, you’re in an ambulance and these firemen are hosing your blood off the sidewalk!”
“Were they hot?”
We both laughed and Olivia shook her head.
“If that’ll make you feel better, sure.”
She didn’t ask if I was ok. We were journalists, and knew not to waste time with obvious questions. Olivia explained that she had called our editor, who had taken us both off the story. She also told me that I had chosen to clutch my bag to my chest as I fell. That Mike told her I had clasped it to me with one arm, the other groping skyward as if hoping for a hand to grab onto. I had never even attempted to break my own fall.
“So your laptop, camera and stuff are all ok,” she assured me, raising the patchwork bag she had retrieved for me.
Among the cheery blue, magenta and sunflower-yellow patches, a few speckles of blood were barely evident.
“But they had to use your scarf to try and stop the blood,” she added.
“Hope you weren’t too attached to it.”
“Nah, I’m more attached to my blood,” I joked, frowning at the phlebotomist who had finally grabbed my hand, threaded a butterfly needle and extracted the vials she needed in frustrated silence.
The emergency room was a busy place that day, although I do not have anything but television to compare it to. The peace protest had broken out into riots and people kept parading through, flanked by police, their bodies in various stages of disarray, their faces mottled with anger and fear. I remember the whites of eyes, hands in zip ties and shouting. So much shouting it disoriented me, and I felt apart from it all, more than I was already. The protesters were ushered through, while anyone else whose injuries were deemed non-life threatening had to wait. Since I was no longer in immediate danger of bleeding out, my stretcher got relegated to a waiting area.
Time stopped or sped up as Olivia and I sat on a stretcher and tried to pretend nothing was wrong. It never occurred to me to be worried. I keep coming back to that, because every time I tell the story, everyone expects fear. They expect panic. They expect pain, but nothing happened the way I would have expected, including my reaction. Tempered by medication and the uncertainty that comes with entering a circumstance unscripted, I remember talking with Olivia and watching the world go by with a medically detached interest because I still didn’t fully believe it was happening to me.
After two hours that seemed like years, a medical assistant wheeled me into a large room made into smaller ones with curtained partitions. There, a woman in pink stitched up my head while she talked to me about body art. I told her I liked the silver coils she had snaking through both ears. They sparkled, little live springs, and I thought I saw them slither under the fluorescent lights. She explained that I would have to take all of the metal out of my body for the MRI I would be having once the gash was sewn closed.
“It’s like a giant magnet,” she told me, her voice floating from behind as she deftly sewed up my skull.
I imagined I could hear the needle clinking against bone and it made me think of silver snaking through my veins, pinning me to the roof of a giant, white coffin.
And so, as Olivia and I waited, I collected jewelry. Four earrings, one septum ring, a necklace, five bracelets, and a handful of silver that writhed and shimmered against my fingers. I watched it sparkle under fluorescent lights and thought this is what a soul must look like.
“Aren’t you scared? Shouldn’t you call your family,?” Olivia asked as we watched doctors hurrying back and forth, their white coats swishing as they squinted at charts in their hands that did not tell them to collect me.
Their shoes squeaked white and they always avoided my eyes.
“I don’t want to bother them,” I said.
My aunt was at a conference in Baltimore and my uncle was working, too.
“It’s no big deal. Just a few stitches and it’ll be fine.”
“Don’t you think they’ll want to know?”
“I’m sure they do. And they will, when I tell them later.”
The fentanyl kept my body feeling two sizes too big, my mind comfortably removed from the bewildering world around me. I thought vaguely of my nurse practitioner mother and of how she would have asked too many questions. I thought of my banker father and of how he would have demanded answers. I thought of my aunt and uncle and the way they fussed over everything from how I loaded the dishwasher to my chosen career, surrogate parents as I lived with them for the semester. I thought of my aunt’s worry, growing like a black cloud and consuming everything. They would all ask questions. They would make it dire and real. I didn’t want it to be real.
“We can wait,” I said, over and over, as the hours ticked past and we sat as though forgotten.
“It’s not going to make things go any faster if I make them wait, too.”
I could have called it the pluck that had been instilled in me by having a mother in the medical profession. She had always shrugged at scrapes and scratches. I had once plucked gravel from a skinned knee with a pair of tweezers as blood ran down my leg, nonchalant at everything but the damage it might do to the bathroom rug. Blood had never bothered me, and my mother had always treated injury with an academic eye.
“Suck it up,” she had said, more than once when I worried about an ache here, a popping sound there.
My parents had taught me how to take care of myself. A couple of stitches, a few hours on a bed, I could handle. I didn’t think I had a choice.
The technician allowed me to keep my navel ring in the MRI machine, although he looked skeptical.
“I guess since we’re focusing on your head, it should be ok,” he said. “But put your hand over it and if it starts to feel at all hot, let us know immediately.”
He didn’t take into account that I was numb enough that my bellybutton would have to be literally on fire for me to notice, but the screeching, buzzing, vibrating procedure passed without incident.
After it was over, rather than transferring me back to the now-familiar gurney, an aide came with a wheelchair instead, Olivia trailing behind with my bag in her hand.
“We’re going to admit you for the night,” the aide told me, as I was lifted into it.
“While we wait for the results of the MRI.”
“But I feel fine,” I argued.
"I’ve been waiting for you people to get to me all day. Why can’t I go wait for those results and go home once they say I don’t have one?”
A faint buzzing filled my ears that I could have attributed to either the MRI machine or my gathering dismay at the idea of spending the night in that place. Admission brought the gravity of the situation into sharp relief. For the first time, I felt the grumblings of emotion begin to tickle the back of my throat, and I swallowed hard against the loss of control I was sure feeling would bring with it.
“Because,” she said with finality, wheeling us both around. “That’s policy.”
Two things confronted me as I was transferred into the hospital bed that awaited me: it was a private room, which was a relief, and my aunt was sitting in a chair by the door, which was not.
She jumped to her feet as soon as we came in.
“What the fuck, Lizz?”
It struck me how that reaction was becoming increasingly common, lately.
“How was your conference?”
“Why didn’t you call me?”
The women in our family screech like banshees when upset, and Aunt Tammy was no exception.
“You didn’t think I might want to know you’re in the hospital?”
“I didn’t want to interrupt your conference. And it wasn’t like you could do anything about it.”
“I could have been here!”
“Olivia was here,” I reasoned, glaring at my friend, who was now trying to creep out the door.
“Thank you Olivia,” Aunt Tammy said, whirling around as if noticing her for the first time. Olivia shrugged noncommittally.
“I’m glad someone was, even if she didn’t feel the need to tell her own family what was going on.”
“I didn’t want anyone to be worried.”
“Little late for that.”
Aunt Tammy sighed and collapsed into the chair, as if the weight of the situation was too much for her to bear.
I noticed she was still wearing the suit she had left in that morning with a maroon shell and beaded necklace I had always considered borrowing without permission.
“Um, if you guys are ok here, I think I’m gonna go,” Olivia said, her eyes shifting nervously from my face to my aunt’s.
“It’s been kind of a long day.”
For the first time, I noticed the lengthening shadows the slat blinds were throwing across the floor.
After Olivia left, Aunt Tammy ran her hands through her hair and stared at me, a smile tickling the sides of her mouth, cracking her exasperated expression. She could never maintain one emotion for long.
“You look like something out of a horror movie. I’m going to call someone to get you in a shower.”
When a nurse arrived and wheeled me into the bathroom, I almost didn’t recognize the person I saw in the mirror. Her skin was rust-colored with streaks of dried blood, her hair matted, crusted and sticking out in places. She looked like Medusa, her face smeared with gore and surrounded by a halo of snaking coils. When I touched it, flakes of red fell onto my lap and I shuddered, then winced. Tiny darts of pain slithered through the skin surrounding the wound, suggestions of pain, really. Olivia had been staring at this apparition all day and hadn’t said a word. I think I was grateful for that.
A gaggle of men and women in white coats with clipboards trouped into the room immediately after I let the nurse help me change into the pajamas Aunt Tammy had brought. I remember the delicate treatment of IV tubes and fabric was too much for me, that my own limbs felt heavy and unfamiliar, that I was surprised at how thankful I was for another’s hands on the body I suddenly distrusted. The doctors stood in a half circle around the end of the bed and peered at me like my malady was written across my face in hieroglyphics.
“Twenty-year-old female, unexplained loss of consciousness, no syncope. Blood pressure normal, glucose levels normal, hydrated,” one read as the rest scribbled furiously.
One of them told the paper in his hand that he was going to order a CT scan, an EEG, an EKG, a stress test and some more blood work. The MRI had been clean, with the exception of a moderate concussion.
“Any pain?” he asked, looking up for the first time.
His eyes were a striking, startling blue and as blank as a pair of marbles.
I shook my head and the room spun. The floor was a checkerboard pattern, and I stared as the tiles shifted and bobbed in place. He raised his eyebrows and pushed a button near my hand. Warmth spread from my IV arm through my body as the floor tiles shifted back into place.
“I’ll check back with you tomorrow. Get some rest.”
He ushered his team out the door and their footsteps echoed down the ceaselessly noisy hallway. Aunt Tammy left shortly thereafter, promising to return the next morning. For the first time since I left her house that morning, I was alone with my body, alone with my mind.
Lying in bed, trying to think through the gathering fog of medication and exhaustion, I thought about why the doctors had asked me so many times what I’d had for breakfast, if I drank water, if I’d felt dizzy. Hunger, dehydration, wooziness would have explained my sudden collapse. I remembered my grandmother’s stories about her husband’s illness. How it started with him passing out at the mechanic garage he owned. How loud his wrench clattering to the concrete must have been. How it escalated into seizures that persisted even after the doctors operated on the brain tumor that caused it all. I remembered pictures of him in an orange plaid recliner, the gray at his temples the same as my own father’s, my tiny, newborn body on his chest, his eyes sunken with illness. How he succumbed not long afterward, right before Easter. Exactly twenty years ago. My mom’s dad had died of a brain tumor as well, although she hardly ever talked about him. He had been an engineer, until his brain betrayed him and he was wracked with strokes that left him unable to talk, to walk, to eat, until they finally killed him. I envisioned myself, falling out of the air, my hands groping for something above me, something I hadn’t found.
I thought of the last time I passed out, when I attributed my loss of consciousness to a bulimia-induced electrolyte imbalance. I had thrown away the order for blood work and pledged to stop purging before I did any more damage. It had seemed that simple: to let myself gain mass, gain gravity, gain substance that would keep me grounded. I had eaten breakfast. I had drunk water. I had forfeited the space between my thighs that I thought gave me meaning and I had begun looking through my own eyes in the mirror and I thought that had helped. The IV snaking from my arm, the little yellow water pitcher on the table next to me, the unfamiliar sheets that scratched against my legs, the heaviness in my limbs from medication or exhaustion or realization of where I was, the faint idea of pain behind it all, told me I had only delayed something that had finally caught up with me. And I didn’t know which was worse: that my brain had betrayed me or that I had.
Did I do this?
The next two days passed in a blur of white coats, needles, electrodes and machines. It felt like someone was always coming for me, to stick nodes to my chest, to tell me to lie still, to carry me away. I underwent each test like checking it off a list. My parents and teenage brother were due to visit for Easter that weekend anyway, so they flew in early and immediately took over. Mom brought me sushi to give me a break from the hospital food, my brother took up residence texting in a chair by the window, my dad made jokes about me ruining their vacation and I hunched over my laptop, trying to poeticize my way through the rising fear that threatened to overtake me during the lengthening lucid periods in between tapering doses of fentanyl. Swallowing pills. Swallowing fear.
“I see you don’t wear our gowns,” one of the nurses remarked dryly as she wheeled me to another test the second day.
I was still wearing the pajamas my aunt had brought me: a pair of flannel pants and a shirt with “Free Will” written on the front, a souvenir from a Shakespeare festival I had worked at the summer before. I just smiled. As a journalist, I had no interest in obvious questions.
Test after test yielded no results and the supervising doctor ordered a lumbar puncture on the evening before I was due to be discharged, the night before Easter. It felt like a last resort.
He explained that I had to lie flat on my back afterward for half an hour or risk a headache, “Like nothing you’ve ever seen.”
A spinal tap would also rule out a medullabastoma, a highly malignant brain tumor that can spread through the cerebrospinal fluid, but I was not told that at the time. I did not realize that until years later, researching the procedure, researching its aftermath. I was not angry that he didn’t tell me. I don’t think it would have helped.
Having a long needle inserted into one’s spine feels like being slowly skewered, like most needle insertions, after the initial skin prick, it does not hurt so much as it feels unnatural. The spine is usually coddled, the central line of the body. Having it pierced through felt like being violated. It felt wrong.
Days afterward, my mother would say that I sat up too quickly. She would tell me that if I had followed the doctor’s instructions explicitly, I would have been fine after the procedure was over. Later, my research showed that a spinal fluid leakage at the puncture site was more to blame. All I know is that I felt fine until we were in the subway on our way back to my aunt’s house for Easter dinner when suddenly, I couldn’t see.
Pain does not always manifest itself in the ways we learn to recognize as children, when we fall and scrape a knee and see blood welling onto the skin. That pain appears on the surface as an indignant response to the breach of a barrier. That pain, I knew like an old friend. This pain was a systemic response to a more fundamental violation. I did not recognize it as pain at first. Because this pain was blinding, blinding my eyes and my thoughts and throwing me into a world in which I lost my body, in which I lost myself because my brain threw all signals into convincing the rest of my body to respond immediately, without getting in my own way.
As I lowered my head to the seat and my ear found the cold, sticky plastic, my vision speckled with brown spots and I once again became aware of the thunderous clack of wheels against tracks, of my mother’s voice asking if I felt alright. My stomach roiled and my head throbbed, no, hammered no against the insides of my skull. I think I whimpered, and I think her hand was on my back, but mostly I think I descended into a world in which pain was the first and last word, in which I barely existed. If I kept my ear parallel to the floor, I was ok. If I raised it as much as a couple inches, the world shut down in favor of returning me to a horizontal position.
My parents half-carried me out of the subway, into the car and, after a brief, failed attempt at dinner, deposited me into bed. I stayed there for the next three weeks.
I spent those weeks getting to know my body as an ally. For years, we had been at war with one another, fighting an endless battle between intake and output. I had bullied it into the shape I wanted, pushed it to become what I thought it should be, and I realized I did not know it at all. Like the Opus Dei monks flayed their flesh to atone for their spiritual inadequacies, I had punished my body to make my mind feel whole. It was hardly any wonder I had forgotten it, too, had a voice.
But now, for the first time, my body and I were imprisoned together. My painkiller prescription ran out quickly and the pharmacist refused to give me any more. I begged him, pleaded with him to let me escape from the warden that had a hold on me—the warden that was forcing me down into the trenches where my physical self lived, but he was relentless. They were relentless. Unable to hide behind a gossamer veil of medication, I was forced to listen to my body. I was forced to relearn that I was more than a mind, more than a psyche, that my body and I had to work together toward a new concept of being.
Each day, I awoke and asked my body whether my eye sockets throbbed, my ears buzzed and my stomach churned. If the answer to any of those questions was no, I raised my head a few inches and waited for a response. If my brain began to rattle against my skull, I would lower myself back down and allow pain to take over for another day. If not, I persisted, a few inches at a time, to see how much elevation my body would endure. Unable to transcend my own physicality, I had to learn to inhabit it, to read the signals it was sending me again, like a baby realizes how to stand on two feet.
I am thankful for that month long convalescence, because it allowed me to reacquaint myself without the barrage of distractions my life, my world presented me. I forgot to think about what had caused my initial collapse, consumed by the pain that was a constant companion. Forced to contend with my momentary reality, I forgot to care what the world thought of me, forgot to agonize over the self I presented to my peers and focused on resetting the self I was in isolation, the self I had to live with when everything else was stripped away.
One of my doctors suggested a whirlpool bath, that the massaging water could relax the muscles in my back and the associated tension on my spine that might be exacerbating my condition. I lay in the bath and saw my body through the water, watched its shimmering outline through the haze of warmth and let it dull the pain that was now a familiar companion. Gingerly, I traced the skin stretched over my muscles, grown soft and pliant with disuse. I explored myself as a foreign country. My skin, its texture like a desert combed into waves by relentless winds, the hills and valleys of my hips and thighs, the dove-wing curvature of my shoulders, the mysterious crevices of my fingers and toes, my stomach rising and falling as my lungs filled with air. Feeling the water swirling against my body, I felt more wholly myself than I had in years. It felt real. It felt whole.
In early April, when I was finally able to stand, I accompanied my aunt and uncle to the Smithsonian Kite Festival. I sat on the National Mall with all my senses electrified and focused on taking in the world I had missed for what felt like a lifetime. The breeze lifted the stands of my hair, a soft spring sun glimmered against my skin and the damp, stillnew blades of grass tickled my legs as I watched kites of all shapes and sizes dancing in the breeze above me. I felt cradled in this world. Like those nylon and fabric creatures, my soul soared and kissed the sky.
After my headache, a term that feels inadequate, although accurate, subsided, I was forced to confront the original cause of my collapse. There should be a separate word for the desperate frustration of medical mystery. There should be a more elegant way to describe how it feels to spend days with neurology, cardiology and systemic specialists who look in your eyes and tell you they have no answers. We are taught to trust our doctors, that they have the solutions. Take a pill, let them cut you open and remove something, insert something-- fix you like a broken car. But it doesn’t always work that way, and there are no words for how that feels. I didn’t know then, and I don’t know now, which was more disorienting: the syncope that left my head whirling and unsteady or the shrugging dismissal of the people who were supposed to fix me.
I didn’t know anything. I still don’t. I am still learning to forgive them, to forgive myself, for what faith, hope and science couldn’t do.
I spent the rest of that spring and the following summer learning to accommodate myself. When I climbed the stairs to street level after taking the metro, I always paused at the top to let my heart rate return to normal, filling my lungs with the exhaust-scented air, willing myself back into the context I inhabited. On days when the unpredictable subway got me to my destination earlier than expected, I found a quiet place to sit and watch the world, rather than power walking around the block to burn as many calories as possible. Too much exertion and my head would buzz with static, the ground tilting until I agreed to sit on the sidelines until my body was once again calibrated for movement.
In this way, my ears found the snapping of flags as they struggled against their poles like caged birds, were assaulted by the many layers of traffic sounds in a neighborhood infected with urban sprawl. My feet clung to the Braille pattern of concrete beneath their soles; my skin prickled with sweat in the heat and shrank tight from a cool breeze. When my brain forced me to turn my sight inward, I recognized the signals it was sending to me, which reset my relationship with my surroundings. By learning to be in my body again, I learned how to be in that world, as well. I learned not to look for the reason for what I felt, but to explore the feeling itself. I learned to explore the world within as I had always explored cities and countries: as a brave new territory, as something to be discovered, not explained.