by Lily Fyfe
I am so weary I seek solace in a god I no longer believe in. In this moment, I know that life cannot go on being the same. I am tired. I am a tired girl. I am an in-pain person. I am different now.
I have morphed into a thing that needs comfort, a thing that needs softness and breaks and time.
I am angry and resentful of friends and family who can’t see it. Of them not noticing how tired I am. Of them telling me “Well, you look okay to me.” Of them telling me to do yoga and drink green juices and meditate. Of them telling me it’s the eggs we eat. It’s the meat. Gluten. It’s pollution. It’s my job.
As if I have a choice in most of this. As if I have the time or money or energy to fill my days with yoga and juices and swims and stress-free, vegan lunches. I learn then that everyone wants to be your doctor, but no one wants to sit down and talk to you, face-to-face, about your past, your symptoms, or what you’ve tried before. They say things like, “Have you tried turmeric,” “I have a great acupuncturist,” or “This is a spiritual awakening!” What they mean is, “I care,” but how it’s translated is usually, “My quick fix could end your suffering.” These offers to help sound flippant and trite—no matter how lovingly they might be intended—as if a smoke cleansing ceremony is going to magically undo the body’s attack against itself. In the end, the issue isn’t just other people. It’s who you turn into. It’s the loneliness of being sick. It corrupts even love, even kindness, and it reduces your patience to ash. No one wants to carry that.
The final diagnosis comes in 2017. I’m at the fanciest hospital in New York City, paying hundreds of dollars to get a fucking answer. I remember what the doctors said years ago, that they thought I had ankylosing spondylitis but had no proof of it.
I want proof. And I get it. I demand it. “You have ankylosing spondylitis,” the rheumatologist says. My X-ray shows it this time. My spine is fusing.
“Start the immunosuppressant,” he says, still typing on the computer. “You’ll inject every two weeks, right into your stomach or butt.”
I think, Look at me in my eyes.
“What?” I say. “Every two weeks? What is this medication?”
“It’s the best on the market.”
And with that, he’s done. He’s rushing me off, compassionless, ready for the next number.
“Let me know when you’re ready. We’ll show you how to self-inject and get you your kit.”
What he doesn’t mention is that the medicine causes cancer, that it doesn’t actually guarantee progression prevention. That some people get sick when taking it.
The medicine hurts, and none of my friends know how to ask me about it. They either don’t understand that I need a medicine for an invisible illness, or they assume the medicine is fixing me when it is not. My immune system shuts off completely and I get shingles and a lung infection. I stop the medication. The cycle continues: different drugs, different physical therapies, holistic treatments, self-care like it’s going out of style, saying no to plans, pushing through pain, constant exhaustion, the fear that I’ll be immobile in ten years. My spine, waging a war against itself—and me. Throughout, doctors telling me to take it easy, that it could be worse, that men tend to experience ankylosing spondylitis pain more intensely than women.
According to the journal Pain, there is a real connection between expressions of anger and chronic pain, specifically lower back pain. No shit, right? We don’t exactly need science to tell us this. Anecdotally, plenty of women express feeling anger around chronic pain. It’s not just the pain that causes it, though, it’s that the world isn’t built to accommodate invisible illness.
The chronically ill are sometimes accused of “playing the victim” for pity or attention. But if being a “victim” is what it takes to find accommodation, understanding, compassion, financial aid, and employment considerations, sure—I’ll play the victim.
In an October 2015 piece in The Atlantic, “How Doctors Take Women’s Pain Less Seriously,” Joe Fassler, on his wife’s experience being ignored for hours in the emergency room, writes, “Nationwide, men wait an average of 49 minutes before receiving an analgesic for acute abdominal pain. Women wait an average of 65 minutes.”
There’s also the 2001 study “The Girl Who Cried Pain,” which asserts that when women are eventually treated, they’re less likely to receive pain medicine—and more likely to receive sedation, as if we’re not in pain, we’re hysterical. As if it’s not physical, it’s psychosomatic. There are cases upon cases of women suffering from chronic illnesses or other diseases—like fibromyalgia or endometriosis, as just two examples—who are told they’re either lying or falsely reporting their pain. All of this is compounded for women of color and fat women.
History has drawn women in the shape of weakness. In the shape of melodrama. In the shape of less-than.
My own friends accuse me of “taking it too far.” When I cancel plans, I’m a flake. When I leave early, I’m a downer. When I say it hurts, they say, “Well, you look fine.” When I say I feel tired, they say, “Well, you wrote a book! It can’t be that bad.”
I’m convinced we are not trained to communicate with empathy. Instead, we’re trained to see sick people as burdens—on society and on our patience and comfort.
How do you not internalize this negligence? How do you fight against this demand for proof? How do you not learn to question the severity of your own pain at every turn? I think of how my doctors seemed shocked I wanted to see a specialist. I think of how my symptoms weren’t carefully considered—but instead seen as a fault of my own, as if I wasn’t sick but instead guilty of jamming a contact lens into my eye. It wasn’t easy to ask for another appointment, to advocate for myself, to demand more blood work. The truth is, if the pain wasn’t as severe as it was, I may have just cowered and ignored my instincts. I may have just accepted that I was being paranoid, hysterical, overly sensitive. Why does it take so much to make them see?
I think of my mother, who is on Medicaid—which limits her options for care. She has waited months for an appointment with a thyroid specialist only to be told that she is “not the professional” and just needs to wait for the medicine to work. I think of her stress and frustration, how that stress affects her health, how that stress adds up over a lifetime.
The silencing and the invisibility lead to anger, and the anger leads to sickness. Poverty and ignorant employers lead to anger, and the anger leads to sickness. Insurance bureaucracy and the lack of social and community accommodation lead to anger, and the anger leads to sickness. The whole cycle is broken; the body learns to lean into that constant surge of stress hormones and negativity, and the body stays ill. That’s the collateral of a system that erases the voices of the sick and disenfranchised.
I am a spine on fire. I am a collection of joints and bones and tissues that wage war. I am every step in pain. I am not thinking clearly. I am not moving quickly. But I’m also not going quietly. Gone are the days of staying silent when a friend reduces my experience. Gone are the days of sitting idly by when a doctor refuses to go into detail. Gone are the days when I snuff out my light simply so others won’t feel the glare. There is too much beauty in being alive to silence my intuition, to ignore my body, to not sing its needs and demand that they be met. As it turns out, my anger has become my savior.
Rebel Girl
MELISSA FEBOS
My father and I sat in near silence for the four-hour drive to western Massachusetts. The worst possible thing had happened: my father had read my diary. Now, my parents were sending me to summer camp for three weeks. Over the previous eighteen months, I had undergone a personality transformation. They had seen the outward signs—how my grades slipped and my once gregarious and sweet disposition now alternated between despondency, sulking, and fury. The diary revealed that this new me also lied and drank and spent as much time as possible in the company of bad influences and older boys who either believed that I really was sixteen or didn’t care that I was actually thirteen. I,
too, was confounded by my transformation and so my diary offered a meticulous accounting of events with little reflection. When I imagined my father reading it, my mind blanched white hot, like an exposed negative. My body was brand new but felt singed around the edges, already ruined in some principal way.
As we neared the address of Rowe Camp, our station wagon trundled down a winding dirt road for what felt like an interminable length of time. I desperately wanted to escape my father’s company and also loathed the idea of spending the next three weeks at what I imagined would be a grisly tour of compulsory activities as boring as they were wholesome: hiking and campfires and trust falls into the arms of teens who swore they’d never let a cigarette soil their lips.
A bloodcurdling shriek interrupted the silence and startled me out of my sulk. A small band of teens hurtled out of the woods, barefoot in cut-off jeans and little else—their faces and bare skin emblazoned with streaks of paint. They screamed like feral creatures and descended upon the car. One jumped onto the hood, slapping the metal like an ape. Did I scream? It would have been a sensible reaction. A ghoulish face pressed against the passenger side window and growled, “Welcome to CAMP, CAMPER!!!” I recoiled, as fear and excitement spurted in my chest. The window might have been a mirror and I faced with some wild and estranged part of my own psyche in its glass.
Ours was a regular town—on the big side, liberal in a suburban New England sort of way. That is, my neighbors mostly voted blue, but in the tourist economy of Cape Cod, both the rich minority and working-class majority skewed white and culturally conservative. With my Puerto Rican sea captain father and psychotherapist mother, we didn’t fit in. If our optics hadn’t set us apart, our politics still would have. As a kid in a stroller, I had marched for abortion rights and environmental protections. When I learned to read, I discovered that my mother had corrected all my fairy tale books with a Sharpie so that the female characters were responsible for more of the heroism. My bedtime lullabies were Holly Near songs and my first concert Sweet Honey in the Rock. By thirteen, I’d already won my first literary accolade: a poetry prize for girls from NOW, the National Organization for Women, whose local chapter meetings I had, until recently, attended with my mother and her friends.
The only thing I’d called myself longer than a writer was a feminist. But my feminism was my mother’s feminism, second-wave consciousness-raising feminism, Ms. magazine–reading feminism. I had no feminist friends my own age and already knew better than to use the word among my peers. Similarly, I knew that I was queer and that it wasn’t safe to admit that at school. I knew about the evils of capitalism and patriarchy and I still had a secret eating disorder. There seemed no way to reconcile these things. When puberty hit, how was I supposed to rebel?
I packed up my nascent political beliefs and shoplifted some skintight bodysuits. I soaked my bangs in Aqua Net and fried them in a curling iron. I lied about my age and let those older boys grope my precociously large breasts. A new heat urged me toward them, a small oven of desire I hadn’t known was in me. Their hands never failed to smother it. Still, the rumors spread at my middle school and soon the girls I’d known since kindergarten called me a slut. Boys who’d played baseball with me on teams coached by my father made crude gestures when I passed them in the hall. Of this torment, I told no one. Least of all my concerned parents. Outwardly, I barely reacted to any of the humiliations that had suddenly become so common, though I burned with self-hatred, as if I’d ingested a poison that was slowly blackening my insides.
At home, I locked the door of my room and let the floor become a cauldron of dirty clothes. When forbidden from sleeping over at my friends’ most unsupervised homes, I slammed the door and flung the small precious objects atop my dresser—a glass candle holder, a figurine of a deer—against the wall until they smashed. In discreet moments, I seethed with a particular kind of rage, as marked by shame as it was rebellion. To direct it at my parents was a small and unsatisfying release. I had never felt more alone.
This summer camp was not, as I’d feared, filled with campfires, canoes, and crudely woven friendship bracelets. This camp offered workshops like “existential crises on the back porch,” zine-making, and creative writing led by a Nick Cave lookalike named Dave, who gave us Rilke’s Letters to a Young Poet and said only one sentence all afternoon: “I hate white people.”
The camp director that year was a woman named Nadia. In her early twenties, Nadia was six feet tall in combat boots and overalls with a shaved head and arms emblazoned with tattoos. She stomped rather than walked and used the word fuck as though it were the interstitial glue that held all other words together. I hadn’t known that women like her existed, that her kind of beautiful was an option. When she looked down at me, though terrified, I felt more seen than I’d ever felt under another person’s gaze. I have since learned that recognizing the invisible parts of oneself in another person can feel like a radiant kind of love.
I hadn’t known until then that there were other kids like me. That is, deeply thinking and feeling. Interested in art and politics. Misfits in the landscape of American normal. I’d never met young men who could talk about their feelings, let alone about the trouble with gender and sexism. Still, they didn’t hold a candle to the girls. The girls at camp wore holey jeans and cut the necks out of their T-shirts. They didn’t shave their armpits or flatter boys or cringe at the word feminism. Their anger didn’t manifest like an ingested poison, silently disabling them with symptoms like starvation or self-harm. It was more like a fire to which they were immune but could spread anywhere they touched, perhaps even me. I was a little in love with all of them, but especially Julia, with her pretty round face, her tiny mouth and nose, her cheeks smooth and delicately furred as an apricot. She was the only thirteen-year-old I’d ever met who was as committed to her future profession as I was to mine, though she planned on being an actor, not a writer. Once, after an uproarious laugh, her gravelly voice intoned, “I hear laughing burns five calories a minute. Am I skinny yet?”
I had met neither the irony nor the earnestness that I encountered at Rowe—it was the first time I’d ever seen anything that resembled my insides on anyone’s outsides. It was the first time I recognized what kind of teenager I wanted to be.
A lot of camp traditions embodied the combination of irony and earnestness. On Field Day, all the interested women played a game called Slaughter. We met in a field crowned by cherry trees and Nadia divided us into two teams: shirts and skins—which is to say shirts and bras, sports or otherwise. The object was to get a partially deflated soccer ball into the opposing team’s net. Everyone played on their hands and knees and there were no rules except to forbid serious injury, such as, no biting. Fundamentally, it was a freestyle wrestling activity complemented by some exuberant trash talking.
That year, it rained, and as we knelt in the muddy field, hair plastered to our faces and necks, I quickly forgot to worry about how the wet T-shirt clung to my belly. I had always been athletic, but being a strong girl had stopped being a good thing and having big boobs had ruined the pleasure of running bases and swinging a bat. The self-forgetting that exertion required was not safe in the company of my peers back home. But at camp, we growled and yipped like hyenas, clamped each other’s torsos between our muddy thighs. I flung that ball into the net and raised my arms in victory. My new friends tackled me like jubilant puppies.
It was the strangest and most wholesome game I’d ever played and probably the most fun I’d ever had in my life. It wasn’t erotic, but it wasn’t not erotic either. It was through Slaughter that I first realized that the erotic need not be sexual. I was starved for touch and so bereft of any source that didn’t estrange me further from my own body that their rough and benevolent hands felt like medicine. Afterward, bruised and exhausted, I lay in my bunk, smiling to the dark. I glowed with a happiness that seemed to arise not from my mind but from my body. (Years later, in a different bunk, I would recognize it after I had my first org
asm with another person, a female fellow camper.) I hadn’t known that it was possible to feel strong and animal and close to other women, or that I could enjoy my body in ways that had nothing to do with men or what pleased them.
On the first day of camp, I had stared at the massive hand-painted calendar in the dining hall, at a square in the last week of camp. Co-ed Nude Beach, it read. I had told myself that it must be a joke. What summer camp would take its teens on a field trip to a co-ed nude beach? To any sort of nude beach? This summer camp, as it turned out. All campers could choose to stay at the clothed beach or move on to the gendered nude beaches or to the co-ed nude beach. When Julia asked which beach I planned on attending, I simply laughed. There was nothing I was less interested in than being seen naked.
In the days leading up to our trip to Harriman Reservoir (whose nude beach closed in 2002 when the local Vermont governing council voted in a public indecency ordinance), the staff led community conversations about the difference between nudity and sexuality. Before bed, in our cabins, we had group check-ins about body image and shame. By the time that day rolled around on the calendar, a miracle had taken place. I hesitantly signed up for the female nude beach.
It was a perfect day, the sun dappling the water as my friend H’rina and I lay in the sand, sharing headphones through which De La Soul’s recently released Buhloone Mindstate piped. Not even my own mother had seen me naked since my body had changed, but here we were: tits out, tampon strings trimmed, sunscreen everywhere. My heart pounded as I peeled off my swimsuit, but after a few minutes of curious looking, it felt shockingly normal. Bodies! How weird, but also entirely ordinary. I immediately understood that no one cared about my boobs even a fraction as much I did. What a relief it was.