When I had been living in the desert for a half a year, my body finally fell apart. Years into my compulsive exercise habits, I found myself living between episodes of sickness that left me unable to take a walk, let alone work out. At first, no one noticed, not even me. It happened invisibly. The major systems began to sputter and creak like they do in old and poorly maintained cars: first the transmission, then the gaskets.
The human body has twelve major systems. Seven of mine were in some state of distress or dysfunction: nervous, circulatory, endocrine, cardiovascular, reproductive, lymphatic, digestive. The brakes ground low and the rotors wore smooth. Pieces rusted and bent and fell off. The paint flaked. It was 2019, I was in my thirties, and I had never been sick like this before.
Earlier, when I was younger, my body had broken in contained ways like they all do, piecemeal: a split heel bone here, a torn tendon there, a single kidney shuddering to a halt, strep throat burning as if my gullet were made of hot asphalt, an ovarian cyst blooming to the size a of grapefruit. You mean an orange? I remember asking that doctor. No. A grapefruit.
It was easy, relatively, to ignore broken, swollen, infected, torn-up pieces when they happened one at a time, but harder to ignore the way my body started collapsing: all of it, systemically dissolving into a chaotic tumble of radiating and pulsing pains, a large web of weaknesses, clammy pieces strung together by what they had in common: they hurt. Once I started getting sick, one of the side effects of all the pain and illness was that it became very difficult to keep track of time, even in retrospect. Time stretched and contracted, time was elastic. Time seized and halted, time was granite.
The first three or five times I was taken down by an episode of sickness, I thought it was the flu, or something similar: something I’d caught, something that had come from outside of me and was temporarily housed in my body, something I could cure with Emergen-C and vitamin B12 and hand washing. But it kept happening, kept happening, kept happening. Three months passed that way.
By that time, I had settled, as best as one can, into the scraggy dusty landscape of my life in the desert. I had a big white pickup truck with a tinted windshield and an absurd sun hat and a cache of sunscreen in every bag. I wanted to experience my life—my work, my love, my training at the gym—but even when I was not severely sick, I felt shitty. My baseline had fallen to a place where I was startled on the days I woke up without illness.
At first, I was horrified to discover that I was unable to work out. As the days on my couch stretched, hazy with pain, I would make mental plans for how to stack the whole week’s athletic programming into the following week, promising myself that as soon as I felt well again, I would make up the miles or the lifts. Soon, as I learned that I would emerge from the sickness flares weak, sore, and inflamed, those plans became ludicrous even to me, and instead I would retreat into comfort eating, allowing my body to lurch and grind to a halt, all pain and mashed potatoes and my sweaty down comforter. Losing my identity as an athlete in this way crushed me, but bodily emergencies bring with them a reordering of priorities that happens by force, rather than decision. I still trained when I felt well, but it didn’t work the same way it always had. Once I knew physicality could be taken away at any moment, it was no longer an expansive space to disassociate into, and it lost the power to organize my life. Had I experienced this loss a different way—the way I did, temporarily, when I broke my heel, say—it might have devastated me. And in a slow, quiet way, it did. But I was busy with a much louder and more frightening loss, feeling my abled body slip away into hazes of helplessness. Knowing that I might never load two hundred pounds on the barbell again was crushing, but not as crushing as knowing there were days when I was unable to drive or walk down the street.
One of the more confounding parts of my mysterious illness was that it was very difficult to describe. I describe things for a living, translating abstract experience into concrete terms. But for my sick body, I didn’t have words. I indexed my systems and parts and scoured the internet and tried to pry out phrases or expressions that related to how I was feeling. What I came up with was vague and scant and often nonsensical: I am sweaty, I am sick/my skin hurts, my blood is buzzing/everything feels sore, everything feels cold/I’ve thrown up, I’ve passed out/my vision is blurry, my heart is beating wrong.
Three more months passed, and the good days when I felt so well I forgot about my illness stopped happening. I quit making advance plans altogether because of the possibility that I would be too sick to travel or see people. I became so phobic about germs that I didn’t want to eat in people’s homes. I brought the words ill and unwell into my daily vocabulary because I was so tired of hearing myself say the word sick.
The list of people I was employing to help me maintain a fingernail’s grip on my health and sanity grew to alarming proportions. My team was spread across an ocean and a continent. We mostly spoke over email or the phone. If it takes a village to raise a child, it was taking an expensive and highly credentialed battalion to raise this adult. I talked to multiple people about my health on a daily basis. The project of managing chronic illness, I was learning, demands prevention, vigilance, and damage control.
Paul: my nutritionist. He told me what to eat, when to eat, and how much I was permitted to exercise. He remotely monitored my adrenal fatigue and I followed his instructions to a T because he was expensive, nearly six hundred dollars for three months of 24/7 emails and intricate Excel spreadsheets. I could tell him about my crackling joints, my exhaustion, and my insatiable desire for salt, but he didn’t close-read my emails. The relationship was so explicitly transactional that I couldn’t ignore the truth, which was that I could have stopped emailing him, eaten whatever the fuck I wanted, and CrossFitted myself into organ failure and he likely would never have thought of me again. Maybe, I thought, that would be fine.
Susan: my twelve-step sponsor. She is not a mental health professional, but she has walked her own path and shared her experience to help me decide what to do with my heart and soul and feelings. I told her the worst parts of me in minute detail: the humiliating fears, the unacceptable feelings, the churning resentments. She gave me compassion and hope with stories about how her own life crumbled and how she rebuilt it. Somehow in those conversations I got a better sense of how to shrink my selfishness, my entitlement, my insatiability, and that spiritual progress blunted my ever-growing obsession with thinking about being sick. Being sick and being afraid are hard to disentangle, because it is frightening to develop a mysterious debilitating illness. There was, for me, a loop that developed, wherein I became sick, and then I became frightened of becoming sicker, and then the thinking and the fear made me feel despair, and then the despair and the sickness together made me feel a thing worse than the sickness on its own. When I talked to Susan, I was still sick, and I was still scared, but they weren’t all twisted up together.
Dr. Erik: my naturopath. He took my blood, spit, and money and turned them into vague, digressive diagnoses that offered validation and not much more. In the face of so much minimizing from the doctors before and after him, that was worth the cost. He believed I was sick, that my symptoms were real and neither imagined nor somehow manifested by depression or anxiety. He understood without my telling him that I was cold and turned off the ceiling fan in his office. He told me to run the shower alternately warm and cool—not hot and cold, that would be too violent—to create contrast hydrotherapy to soothe my frazzled nervous system. Dr. Erik charged what I perceived to be a premium rate for administering ozone injections to the chronically ill. Isn’t ozone poisonous? I wanted to ask him, but didn’t.
N: my lover. He also, at my request, managed my weightlifting programming, athletic injuries, and joint mobility, refusing to accept any money for these services even though they are his profession. I continued to try to pay him because I felt so grateful for his help. He was the only member of my team whose work had a clear beneficial effect on my body. When I was sick, he took care of me in our home, but he couldn’t fix my days of sweaty dizzy fevers the same way he fixed my crunchy spine and angry hip and ripped-up calf. I’m not a doctor, he would remind me, gently, often, usually as I was pressing his hand into some new unidentified lump I discovered in my breast or my heel or my abdomen. He would tell me to take a rest day, that it would be okay to eat a sandwich, that I could relax a little bit. I would tell him I was worried he thought I was crazy, or that I was inventing or manifesting this illness, and he would look me steadily in the eyes and tell me he believed me, he understood.
There were strangers, too, many one-time encounters every month. Early in my illness I begged a doctor at University of Arizona Campus Health for answers about what was wrong with me. I told her I could feel things swimming in my blood, that I was regularly too sick to leave my house, that I’ve always been healthy, that this was new and alarming and sudden. She typed “general fatigue” on a form and left a message on my online portal saying that there was nothing wrong with me, all my tests were fine. In a doctor’s office with a soft chair, a hospital-gauze-covered pillow, and copies of Architectural Digest, I paid nearly two hundred dollars to be injected with a drip of vitamins and electrolytes. I went to a laboratory in a strip mall and gave my blood, my urine, my saliva; I went to a medical complex on the edge of town to give scrapings from my vaginal wall, swabbings from my cervix. Influx, outflow, all those needles, all those fluids, all those forms. There was a fury in me, weak but simmering, that built with each of these meetings. Before each new doctor appointment, I girded myself to explain my situation yet again. I waited, tensed, for the interrupting that always happened, for dismissal, or for the prescription or the plastic specimen collection jars or the referral. Sometimes, there would be a brief period of hope followed by more confusion and the mounting worry that I might feel like this forever and no one would ever understand.
Dr. Hines: a doctor of osteopathic medicine. An acquaintance gave me her number in a parking lot and I called without doing any research. It was a rote errand devoid of hope. I had seen so many doctors by then that I expected nothing. In her office, she introduced herself and asked what brought me to the appointment. I’m sick, I stammered, flipping the crinkled pages of the legal pad I used to keep track of my symptoms. I was accustomed to being rushed by doctors and so I tried to speak quickly, to only include the most pertinent information, words spilling out of my mouth unpunctuated by breath. She sat quietly and did not interrupt me. Eventually I slowed down. I got to the pages in the pad that I never got to: the small things, the less urgent concerns. After listening to the whole litany, she asked if she could examine me physically. I said yes and she went over my entire body with her hands, spending extra time on my lymph nodes, my reflexes, the soft parts of my abdomen. Her touch was clinical but gentle. It felt good. She praised the fitness of my body and asked me questions about my athletic life, and when she was finished she told me she understood how I was feeling, that I was not crazy, that there was something wrong with me and she didn’t yet know what it was but that we would figure it out. The pronoun we was new, from a doctor—only N had used it in describing the project of caring for me. I cried so many tears of relief and validation in the office and the lobby that I was afraid her staff talked about me when I left. I took with me orders for a battery of bloodwork. She didn’t want to take any guesses without evidence, but she had some ideas. There was a three-month wait for a follow-up appointment.
I was always careful not to call my parents when I was in the midst of an illness flare, though I wanted to, every time. I wanted comfort from them, but it was a mirage. They could only offer anxiety, and their desire to help and to fix me from two thousand miles away was more than I could add to my stack of discomforts. Go to another doctor, they would tell me. We will help you pay for it. They have trustful certainty in doctors, and they don’t understand why I do not. They believe that a doctor can only help, can never hurt, and will always find the right answer. My experience has shown me otherwise. When I was a teenager—depressed, addicted, unmanageable—they sent me to a series of locked wards: hospitals, rehabilitation centers, recovery facilities, detox units, psychiatric institutions, therapeutic boarding school. At each of these places, it was clear to me that I didn’t really belong, and that getting out by any means necessary took priority over any kind of treatment or recovery—but that’s what every crazy person thinks, right? Two decades later, it feels clear to me that most, if not all, of those lockups were far beyond the level of care I needed, and the privilege of my parents’ well-intentioned offers to pay for another kind of specialist always brought to the surface recycled resentments from my younger life, from those years when they didn’t know how to help me, from those years when they paid every kind of professional in the tri-state area to recklessly treat me until I was fully institutionalized, medicated to the hilt, and nearly out of my mind.
The difference between acute pain and chronic pain is a semantic one, and also a neurological one. Acute pain is a primary alert system, a message from body to brain that tells us we are presently suffering disease or damage. Though pain is felt, in the loose sense of the word, in the body, it is actually a product of the brain—this is why the pain of phantom limb syndrome (in which amputees experience pain in their missing limb) is, to the sufferer, just as felt and real and agonizing as pain in an existing limb. The feeling appears to come from the meat parts, but really it is coming from the upstairs computer.
Chronic pain differs from acute pain in that it is its own syndrome, functioning similarly in the presence and the absence of disease or damage to the body. Spend enough time in acute pain, and the neurons of your brain will become damaged, causing a chronic experience of pain in the part of the body connected to that section of your neural brain map—even if the body part in question is actually doing just fine. Chronic pain can take many forms: injury, dysfunction, illness. But once it becomes itself—once, that is, the pain of injury, dysfunction, or illness shifts from acute to chronic—then it becomes just one intractable thing: a pain syndrome.
I felt embarrassed when I reread the text messages I sent when I was very ill and in pain. I sent pathetic cries for help to N and to my best friend: people who I knew loved me unconditionally, people who I didn’t worry about worrying. I can’t deal with this I feel so claustrophobic in my body I don’t know what to do it hurts too much. That one, sent at 12:42 in the afternoon to N while he was working. There was nothing he could do, and I knew this. But the unfathomability of how much my body hurt felt too big and scary to contain within myself, and as melodramatic as my texts were, they were the unvarnished truth of how I felt. When I was in the sickness, I was no longer in pain; I became pain. The world shrank to the precise dimensions of my sensory universe. As essayist Elaine Scarry puts it in The Body in Pain, her treatise on the cultural and philosophical understanding of physical suffering, “the world was unmade.”
Here I feel the need to qualify this amount of complaint with some bona fides. When I was young and a junkie I kicked heroin more times than I can remember. I’d started using heroin to treat the kind of abstract emotional pain that hovers, diffuse and choking. We ascribe that kind of pain to the head or the heart or the soul, and I’d traded it, after a brief period of extravagantly vacant painlessness, for a new kind of pain: the relentless creep of withdrawal sickness. This kind was profoundly physical, felt in the bones and the sinews and the follicles of my hair. Because I was not a very savvy junkie, I kicked heroin without medication and with no money and no cigarettes and no food and an awful thin mattress from Ikea that had sharp parts poking through. I kicked heroin on a couch that wasn’t mine, in front of large windows without curtains, without suboxone, without methadone, without clonidine or lorazepam or alcohol or weed or anything. That, then, is my baseline for agony, an experience of physical and mental suffering that I can’t fully remember because of the mercy of pain’s ephemeral recordkeeping. I know it nearly broke me, but the rest of the details are foggy. All this, nearly a decade and a half before I found myself ill in the desert. All this, my only proof to myself that I am not someone who overreacts, someone who cannot handle pain, someone who collapses under small pressure.
A decade and a half later, I was grown and mostly sane. And the truth is that, compared to junkie sickness, the illness that my body lapsed into was not as bad. Not compared to sitting across a table, glassy eyed with the incoming tide of withdrawal sickness, staring into the receding hairline of one of my sex work clients with what I hoped passed for interest, trying to do the math on how fast I could get the cash and if I could get to the spot before it closed for the night. Not compared to the way I used to sink into my wide-wale corduroy loveseat that was too short to stretch out on to face the inevitable when I had exhausted all my other options. Some girls, they tricked when they were sick. This was—still is—unimaginable to me. When I was a junkie, withdrawal sickness leveled me in a way that did not allow me to so much as cross my apartment, let alone perform the arrangement-making and physicality of earning that kind of money. I only tricked ahead of time. That sickness took a toll on me in a way nothing before or since did, and eventually, after holding my hand on the burner for long enough, I said, okay, I’m scared now. That was what changed me—not the desire for a different life, or the distaste for tossing bits of my body around for fixed rates. That part of the addict’s life? I could have kept doing that shit forever. It was the pain that stopped me. The sickness.
And so in my thirties, employed by an R-1 university, with health insurance and a driver’s license and my teeth fixed, I was baffled at how I arrived back at a version of the same sharp precipice, balancing between fear of and for my body. I hadn’t been a junkie or a wreck for a long time, but still there was something deeply wrong with how I took care of myself. I slept and ate and exercised in ways that raised peoples’ eyebrows. Sometimes I was doing too much, sometimes too little. Sometimes what felt normal and correct to me looked like a disorder to others. I was genuinely unclear about what was good and what was bad, what was care and what was abuse, what was discipline and what was punishment. The part of me that was always seeking, with the certainty of poor judgment, the easier, softer way? That part will kill me quickly.
That part loves heroin booted slow into the thick veins at the crooks of my elbows, loves a man who grabs the fleshy part of my upper arm hard enough to leave pale violet fingerprints behind, loves fistfuls of semolina bread dragged through room-temperature butter and vomited as fast and violently as it was swallowed. I knew I must manage the clamors of that part. I had to quiet them down from an aggressive demand into a soft cry into a whisper low enough to call an auditory hallucination, the echo of another time and place. I did this managing with contrary action: running shoes pulled onto sore feet; barbells hoisted overhead on trembling shoulders; coffee slurped, black, into my hungry belly; three alarm clocks, bleating, early. This management of habits was the most important of all the protocols, because without it the gobbling would happen, a relentless gobbling of everything: food, drink, sensation, experience, all of yours, his too, is there more, I need more, always more.
When I got sick, I lost track of everything. My work, my appearance, nutrition, hydration, voicemails, emails, text messages, appointments: they all receded. The world, unmade, shrank to the small confines of my fever, of my night sweats, day sweats, soggy sheets, of my pain and the words for it: thumping, coursing, brewing, simmering, crushing: words for trying to destroy a thing or cook a thing, not just trying to exist in a body. When I came out of those episodes, it felt like a tide rolling back to release me from its brackish cloak. I felt oddly unchanged by the experiences. The only lessons I took with me were for how to better prepare for the next time: prep some food to keep in the freezer, make sure I have a heating pad on hand. I wanted to have some kind of revelatory epiphany about the nature of my existence, about precarity and gratitude and entitlement, but in truth I was usually so spent that it was all I could do to claw myself back into the driver’s seat of my life, catch up on emails, and go to the grocery store.
During the hottest part of the first summer I was sick, I was meant to get on a plane to New York at eight in the morning. I had been up until eleven the night before. It was too late and I had known it, but it’s okay, I told myself, I will sleep on the plane. I stayed up giggling, watching a bad movie and having good sex, feeling so excellent that I could not recall how it might be to feel bad. I could not, during the joy of those moments, remember how I had felt the last time I had been sick, when I was alone in a truly wretched motel room in New Mexico that I had purchased in the middle of a drive for the sole purpose of having a place to be unexpectedly sick. That time, I was scared, feeling my body crumple like a sad damp rag so fast I could watch it happen, one hour my eyes feeling starchy and my neck starting to throb, a few later, a sweaty mess on the bathroom floor, vomiting out of my nose and whimpering like a child, unclear what had happened, my vision blurry, too sick to drive home. But more than a month had passed since then, and even though that episodic routine had happened more times than I had counted in the surrounding six months, each time worse and faster and more perplexing, and even though no doctor could explain to me what was glitching in my body, what was falling apart or not sparking or coming unglued in there, I knew in the deep and certain place that something was wrong, something was different, something was coming for me.
Since the episode in New Mexico, I had taken meticulous care of myself, measuring ozone-filtered water and carefully deskinned breasts of organic free-range birds into glass containers, careful about toxicities, careful about imbalances, careful careful careful. I had taken great care.
A month later, when the sickness came for me again, it took less than two hours. Eleven at night, falling gently to sleep on N’s chest, utterly well and happy enough to split open with it. One in the morning, waking in a cold sweat to waves of pain rolling in and out of my body, my neck a bright epicenter of sharp pain, my stomach confused and sour. I think I’m sick, I whispered, after lying there for a while thinking I must be wrong, that it must be the ceiling fan or the blanket or not enough sleep or I forgot to have enough water or my protein powder could have been expired or any other not-exactly-water-tight theory. N’s hand was on my forehead as soon as I said it; he sleeps like the parent he is, never fully gone, always available for emergency. You feel warm.
By three in the morning I was in too much pain to lie down or stand up or sit, I could only lurch fitfully from one end of my couch to the other, chewing on the corner of a pillow and whimpering like a kicked dog. I hated myself in these dramas of weakness. Where was my stoicism, where was the person who ran a hundred miles on a broken heel, where was the person who mistook a kidney stone for a rough day at the gym?
I was far too ill to get on my flight, or even to call and cancel it. I stayed on my couch for nearly a week. N brought me soups and noodles and ginger drinks and bubbly water that went tepid on the table. He made me smoothies with hidden greens and rubbed my sore neck and never once said Why don’t you get up? or Are you sure it’s that bad? As I waited for something like that—some revelation of impatience and disgust—I realized it was my mother’s voice I was waiting for. Get up. Don’t waste the day. Up and at ’em. Those, my mother’s mantras. I didn’t understand when I was young that she was working her own stuff out—that she had grown up in the mushroom cloud of her own mother’s depression, and that to see someone horizontal in the middle of the day, sick or not, was so triggering to her own fear of depression and immobility that it really felt to her like an act of love when she dismissed my need for rest and compassion. I didn’t understand until she eventually got ill herself—until she lost months of her life to a catatonic depression that culminated in a psychiatric hospitalization, the ultimate enforced rest—that she was outrunning something of her own, something she might not have had a name for but that had been perched on her shoulder for her entire life. I’d thought it was all about me.
As an adult, no one snapped at me that way anymore, not since Dean. Not for sleeping, not for resting, not for being sick. I didn’t sleep much anymore, anyway. Seven hours was a good night, most were closer to five. When I rested I felt guilty, lazy, self-indulgent. I felt my mother’s panicky impatience and my father’s gritty judgment, vestiges of my childhood when no one understood the difference between depression and sloth. To be sick, even, felt shiftless and indolent. I curled into myself on my sectional couch and wondered What would I do if I didn’t have a home? What would I do if I was in the military? What would I do if I had kids? I asked myself those questions as a way to cast my genuine immobility as something slothful, something I had afforded myself, something I didn’t deserve.
As I pursued answers for what was wrong with me, I wanted to go back to the beginning of the life of my body and ask some questions. I wanted an accounting. What was administered, what was collected. A reckoning. I wanted, too, to go back to the beginning of the life of my mother’s body and ask the same questions: what was taken, what was given. My best friend’s mother had relentless sugar cravings during her pregnancy, she ate pancakes every day during the gestational period. A poet, she wrote my friend a letter describing this habit and telling her which pancakes of what variety she ate on which days. I have such complicated feelings about how care was wielded in my childhood, so many notes on how I would prefer things had been handled. Once I became troublesome, my mother dragged me into the offices of doctor after doctor to be inspected, injected, examined, dosed. My mother, who I feel sure didn’t get as much care as she wanted or needed, inadvertently poisoned me with care.
At a twelve-step meeting I once heard a young woman share about her mother’s Munchausen-by-proxy syndrome, about being maliciously dosed with amphetamines and then marched into cardiac units, about deception and coercion and lies. I know my mother is not in the same universe. I know that the ways she damaged me were obtuse at worst. And still. I have to live in this body.
My parents believe in western medicine like it is religion. When I was a child and a teenager, my mother took me to doctor after doctor and let them fill my young sad body with barely-FDA-approved drugs, nearly every ’90s-era antidepressant and mood stabilizer that I know of, plus more, in wild combinations for off-label uses. My mother loved me and wanted me to be well. I felt poisoned by all these third-party ministrations, addled to this day in ways I will never fully understand or unravel. I love my mother, and I am grateful for her love. All of those things are true at the same time and my body is the stress point of their dissonance.
The doctor’s office does not feel like a safe place to me. It was the first place I was taught to discard my instincts, the first place I was told to ignore my discomfort with being touched. My first doctor, a man. Why do people take their small daughters to male doctors? Why must the indoctrination into grimacing under big cold clammy hands begin so soon? That doctor was fine, I think, and what that means is he didn’t try to fuck me, or anything similar, which is a pretty low bar to set, but still. He was probably kindly and avuncular, I don’t remember, and why not afford him the benefit of the doubt. But I do remember recoiling from his touch. I remember dreading the crumply paper and thick Naugahyde of the examination table, the too-bright lights, the clinical smells. I hated everything about it, but I had to go, and there, the first lesson: This body is not yours, not really. You don’t get to decide what happens to it, where it goes or who sees or touches it. The bodily autonomy of small children feels personal to me, too personal, perhaps.
It never made sense to me that it was supposed to be bad to sell touch, because I was taught, like everyone else, to give it away so easily, against my own desire. My mother takes pills in narrow plastic jars the color of traffic cones and sunglass lenses melted together. My mother takes pills I got sent to rehab for taking.
At rehab, any pretense of bodily autonomy was relinquished. You are inmate as much as patient—any sense of being a “client” vanishes when you are compelled to sit as your belongings are meticulously sifted through. At rehab, they were better at inspecting than the TSA, but still, they missed things. At rehab you might have your cavities searched. At rehab you must open your mouth for inspection.
The mental hospital, however, was worse. When I was fifteen, years before my unmanageability had even reached its apex, I was walked into the upper-floor unit of an old hospital in Rockland County, with bars on the windows and plexiglass protecting the nursing staff from the patient population: from us. When you are fifteen you lack the legal authority to leave such a place; you remain locked in until a team of people, including your parents, makes a group decision that you should be released. The sound of the adolescent unit’s door locking noisily behind me, laminated ELOPEMENT RISK sign fluttering against painted steel, is the precise sound of my parents’ betrayal. At that hospital you were not permitted to shave your legs unless a staff member was staring directly at you: one-to-one, they called it. At that hospital you had to report your bowel movements—I had a BM—and if you didn’t you would be given Colace to aid your stubborn digestion and if you didn’t take the Colace it would be forcibly administered. At that hospital, if you didn’t eat for long enough your small frail body would be held down by three large male staff members while a fourth threaded a length of aquarium tubing up your nose, ripping tearing pushing burning through your septum, down your trachea, into your esophagus, down into your belly. At that hospital, if you ripped the tube out in the middle of the night, spurting hot red blood all over the institutional linens, they would get a new tube and jam it back in, past your abraded nasal passages, into your stubborn cavities. Things they fed us at that hospital: pound cake, ranch dressing in individual serving pouches, cigarettes, Prozac, Ensure.
Unlike my mother, I am scared of pills, of shots, of medicine, of care, but I didn’t know what else to believe in, where to go with my hurting parts and broken systems. I, too, believe in the redemptive power of the diagnosis, of the medical professional. I wanted a doctor to fix me, but I was also terrified of the things they had done to me in the name of treatment. I wanted to scream every time I was offered a flu shot, which I was irrationally afraid of even though I strongly believe in vaccines. After so much bad doctoring and damaging pharmaceuticals, I experience genuine panic at the thought of any foreign substance entering my body. I feel myself leaving logic behind with the urge to scream at every receptionist, doctor, and nurse who tries to press a shot on me that I DON’T WANT TO BE SHOT UP WITH INFLUENZA, that my health is precarious, that you fuckers did this to me in the first place with all your miracle drugs and fast fixes, you broke me worse than I was to begin with and I am now too fragile and too tough—that’s right, both—to succumb to the fucking flu.
In the desert, I drove myself into a state of baseline anxiety from wondering. I wondered if the UV index was making me sick, if I had caught Valley Fever from inhaling fungus that leaked out of the hard-packed Arizona ground, if I was ill from adrenal fatigue, if there were mold spores in my HVAC, if I was somatizing some kind of panic disorder, if drinking bubbly water out of cans had leached heavy metals into my blood. I wondered if I had touched or breathed or swallowed something toxic, if I had moved my body in some incorrect way or amount, if I had neglected to consume something vital. I wondered, often, if I was crazy. In the desert I had more questions and theories than I did answers, and for so long that it felt settled into a permanent state, I stayed sick.
Dr. Hines called me to her office one afternoon when I was limping sullenly around my apartment. I had been sick, off and on, for most of the year. I didn’t feel very well and I had hurt my leg at the gym and it was hot and I was all out of the hope that used to spring from my sternum when someone offered me a new hypothesis on what might be wrong with me.
At her office, she sat me down in a small examining room, produced a sheaf of papers in a manila folder, and pulled up a chair to face me, turning her back on the computer. I was feeling miserable and I wanted her to hug me. I suspect she would have if I had asked, but she did me one better: she looked me in the eye and said, without a hint of uncertainty, I have the results of your bloodwork and I know why you have been so sick.
I was too stunned to respond. No one had ever spoken to me about my sickness so clearly and surely. She spent nearly forty minutes with me, going slowly through each of the papers in the folder, explaining what each level and value indicated, and at the end told me that I have an endocrine system disorder, and that the systems of the body are interconnected—that it’s not like plumbing and electrical, snaking through separate depths of a structure, it’s like a circuit board, each surge and charge of electricity affecting not only the resistors and capacitators that it surges through and into, but each other element of the system as well. She showed me on the papers where my endocrine system indicated imbalance, where my ability to process blood glucose was faulty, where my reproductive system was failing to function. She explained androgens and insulin and luteinizing hormone and anovulation. She told me that these constellations of glitches were why I was never able to become pregnant. She told me they were why I felt so sick, why the sickness was so unpredictable. She told me there were treatments.
I left the office with a prescription for pills I was both afraid of and desperately grateful for: pills that would arrest one of the specific glitches in my endocrine system, and that, if they worked, would cause a cascade of corrections throughout the rest of my body’s systems, until everything fell into balance. I would know they were working, Dr. Hines told me, if I stopped getting sick.
I didn’t go to the pharmacy to fill the prescription for a week. When I finally went to retrieve the pills, the pharmacist stressed the severity of their main side effect: extreme gastric distress, not dangerous but very uncomfortable. I nodded my head and he said, again, with more emphasis, It may be very bad. I took the crinkly paper bag out of his hand with a nod of thanks and trudged back to my truck, already feeling defeated. This was always the way: trading one set of pains for another, trying to play the cards in a way that improved the hand I was dealt, trying to manipulate my body to be more comfortable to live in. I didn’t want extreme gastric distress, and I didn’t want my endocrine system to keep misfiring me into bed-bound illness. I had only a shred of hope that the pills would work at all, and I wanted new cards: a fresh body, mint condition, unmarred and undamaged, without the traces of ten years of street drugs and fifteen years of dodgy pharmaceutical interventions. I wanted cells that would do cell things and neurons that would do neuron things and I wanted to not have to think about any of it. I wanted this body to run like an efficient factory, for all the systems to flawlessly execute their intended purpose, and its insistence on instead squelching along like a wet engine confounded me, infuriated me, crushed me with its inescapability. I don’t live in this body; I am this body. It is less a carapace than the substance of my soul.
In the morning I swallowed one of the small white pills with a few bites of food. I waited for the extreme nausea I was promised, for my belly to start gurgling in distress, but nothing happened. The next day, same thing. I felt fine, blank, even. I wondered if the pills were fake, placebos for a crazy woman. I looked up their stamp and appearance on an online pharma database. They looked right. I still felt fine. I took another one the next morning, with just a cup of black coffee, feeling its chalky friction against the sides of my throat, and I waited.
One of the truths about complex chronic illness is that there are no neat answers, no final diagnoses, no simple treatments. I didn’t know that yet when Dr. Hines told me she could fix my problem, and I desperately wanted to believe her, so I did. In a way, she wasn’t wrong. It’s just that I had a lot of problems, and they were all built out of and on top of each other. I was sick. I wasn’t ovulating. I couldn’t get pregnant.
She fixed the last two with the small white pills, so quickly that I still think of her as something of a wizard. And in fixing them, the baby-size hole in my heart was able to be filled. The rest—the ever-looming flares of sickness, the body that was consuming itself, the constant encroachment of pain—was for later.