Original illustration by Anne Osherson
I cannot locate the day that I finally meant it, this heretofore speculative suicide think, but by some point, not long ago, it seemed I had only two choices: get a hysterectomy, or die. I would not die from endometriosis alone, though it is often called benign cancer, but neither could I bear to live with it.
This past summer, I reached a breaking point. A choppy cross-country move disrupted my medical care, requiring new referrals, specialists, a primary care physician, a new medical cannabis card in a state with a completely different policy, a renewed opioid prescription until I could get the medical cannabis card, refills of antidepressants. A lost social security card stuck on a moving van that arrived two weeks late delayed my ability to get a New York State ID, which I needed in order to see a doctor who could authorize my medical card. All this in the middle of nonstop travel I had scheduled months in advance, as part of my book promotion and visits to universities and festivals.
Three nights before a trip to Europe, where I was up for a prize, I messaged a suicide hotline. I’d missed too many medications at once and needed immediate care. I made it through, but microaggressions in Edinburgh and Paris pushed me into a full depressive episode. The entire ride from Disneyland Paris to my hotel, I considered jumping from the moving Lyft. But it would be too complicated for my husband to retrieve my body internationally, I reasoned. I’d wait until I returned to Ithaca. My period started, and, along with the chemical withdrawals, contextualized some of my increased depression. I took Xanax and Trazodone and Cymbalta and returned to that old devil, Percocet, and fell asleep. I stayed in my Paris hotel room for days, only coming out for Uber Eats orders that turned to gravel in my mouth. I returned to the States and slept and cried. Major crisis temporarily averted; hopelessness still on high; suicide watch on the down-low; hysterical stereotype achieved.
I have always lived in the Gothic castle of my body and brain. Before I was a hysterical woman, I was a hysterical child, a textbook case of what pseudoscience once called female hysteria. The depression predates my own memory. “You were always a melancholy child,” my mother says. In preschool, when a fifth-grade boy I liked preferred a fifth-grade girl, who in my four-year-old mind was my best friend, I was inconsolable. I could read and write and was known as advanced, derisively as “grown,” at my Montessori-style school, but I couldn’t interpret social cues. I don’t remember the details, only that I came home so distressed after seeing Alexandria fanning Ricky with a hat, that my parents, shocked by my reaction, kept me home from school. “You also cried every day of third grade,” my mother says. Major depressive episode at seven? Perhaps. Emerging pattern, certainly.
Anxiety: My symptoms of OCD started around preschool, too, when I found the photos of my own birth that my parents had left out in our den. The sight of the blood, the blue sheets, my crowning—the horror, the horror—sent me screaming from the room. My parents hid the photos, but a compulsion forced me to search for them frequently, reproducing the panic that became routine in my life.
By middle school, I carried deodorant along with aerosol perfume sprays, pre-Axe designer knockoffs arranged near the gum in the grocery-store checkout line (“If You Like Sunflowers You’ll Also Enjoy Dandelion”) to mask my anxiety-driven hyperhidrosis. I cried that I was going crazy, and my mother gave me self-help books. She’d felt the same way at my age, she assured me. I couldn’t open the books, but I used a biblical concordance to locate verses on anxiety—it was my mother’s method; she was too scared or too busy or too something to seek therapy herself, and thus she did not recommend it for me. At first, the verses eased the feelings. Then I needed the ritual; if I didn’t read them every day in the same order, bad things would and did happen.
Dysmenorrhea: In sixth grade, I prayed every day that God would make me skinnier, prettier, a better Christian, let me marry Jonathan Taylor Thomas or Andrew Keegan, and that I’d start my period before I turned twelve. My period arrived in my eleventh year, but by thirteen, it became debilitating. A teacher’s assistant who resembled a sun-burnt Tweety Bird (I’m still working on becoming a better Christian) looked at me with disgust when I limped into the school office complaining of cramps so bad I feared for my life. My mother drove across town, swooped me up, and gave Tweety a tongue lashing that took my pain down from a vindictive 9 to a vindicated 7.
Lasciviousness: I learned to masturbate from my mother’s Christian self-help book about parenting “a rebellious teen.” I didn’t know I was one; I didn’t require a curfew because I never went out after 6 PM and even then only to sulk on the porch or skateboard around our neighborhood. I flipped through the book and found a section on masturbation. One of my teachers had been arrested for doing it in a parking lot, and my friends joked about “jacking off,” but I didn’t know the mechanics of doing it for myself as a girl. The description in the book was so graphic that it served as my first erotica, and, thus, a new daily compulsion.
But bad things came, I believed, as punishment. The bleeding first, pink spotting every day from the age of fifteen, then a terrified gynecologist visit, each bloody mark correlated with touching myself where only JTT or Andrew Keegan one day should.
Sanitorium: In 2011, a nervous breakdown that had been swelling since 2009—since 1983—erupted. My eating disorder became out of control and I believed God was telling me to do terrible things. The suicidal thoughts that started when I was fourteen, and that intensified each month before my period, became unbearable. I sought psychotherapy, and only narrowly avoided hospitalization.
In the photos from my recent trips, I look happy, but I am dead behind the eyes; I chose not to post the ones from Disney because my sparkly Minnie Mouse headband makes me complicit in a lie. The last night of the Brooklyn Book Festival, where on Instagram I am smiling with friends, I considered jumping from somewhere, but New York hotel windows don’t open far, and I hate being an inconvenience, the source of honking and short-lived rubbernecking. I continued to show up for the events I’d scheduled, though I left most of them depressed, crying through the few nights I spent in my own bed, sick with endo and something equally horrifying.
I made and unmade and remade and unmade final plans. Three nagging thoughts complicated them: I didn’t want to hurt my family, particularly the several living with mental-health disorders. Nor did I want to hurt my husband any more than I already have. And I didn’t want to imitate art, reenact the plot in “Suicide, Watch,” my own short story in which a black woman named Jilly announces her suicide plans on Facebook and, disappointed by the reactions, essentially dies of ennui. “Don’t be a punchline. Don’t be a Jilly,” I’ve told myself for the past six months.
I took down my Facebook and Instagram, briefly. I couldn’t announce a suicide with nowhere to do so. I gave up on waiting to be acknowledged by two different crisis lines. I emailed my doctor back in Illinois asking for emergency refills and higher doses of my antidepressants, for anything to tide me over until I could get into the New York medical cannabis system. I took up smoking for two weeks—actual cigarettes—I, a Southern Californian vegan of twenty-one years, a millennial yogi whose father owns a McGruff puppet and says “hugs, not drugs” whenever I see him. I made gifts for people I love. The quicksand still came up to my neck.
I went to the ER and then to a medical cannabis prescriber, telling them each that I couldn’t live this way any longer, and finally got my card. I burned my ankle with a cigarette lighter to feel something, anything, else. I used an X-Acto knife from my craft room to cut myself, but it was covered in cured resin and only bruised but never broke the skin. I Skyped with my therapist. I texted a crisis hotline, messaging for hours with a kind counselor. I told my husband how to access the high-yield savings account where I keep my prize money, our down payment for a dream house near a beach. But he’d live in it alone because I was going to die. I hadn’t decided between jumping into one of the gorges surrounding our new home in Ithaca (so known for its high suicide rates that there are nets in them to stall a leap), or swallowing handfuls of pills while the drugs took me away from myself.
I’d text my family that I loved them, leave a note for my husband; I am not, intentionally, a monster: “It was never your fault. You are as close to perfect as I can imagine, and I’m sorry I am not.”
I’d wander lonely as a ghost, remorseful for my ingratitude while alive. I had the appearance of having it all: Ivy League teaching gig, named professorship, successful debut book, long tour, a few prizes, fancy dresses, gizmos and gadgets galore, a new tax bracket, lots of Instagrammable content. I possessed a lot—just not a life without the casual and blatant racism and misogynoir and ableism directed at a chronically ill black woman living and working in predominantly white spaces.
Depression says that if I were more grateful, did more yoga poses, took more magnesium, pushed myself more, I’d be better. Depression is a white supremacist, a malignant narcissist, a rape apologist, a gaslighter, Iago, a sadist, a masochist, a hot Lego underfoot, a mind made hell. No amount of privilege, or gratitude, could undo these incurable, chronic diseases.
I ended my 2018 essay about endometriosis in The Paris Review Daily excited about excision surgery with a top specialist and the prospect of getting a new life. But while each surgery removes disease, it leaves behind scar tissue. In the long game, repeated surgical treatment is a tautology, a logical fallacy, and the hormonal treatment a farce; it can cause osteoporosis and symptoms mimicking multiple sclerosis. My symptoms are as bad now as they were when I wrote that essay: flooding periods that put The Shining to shame, clots the shapes and sizes of large U.S. states, lower back pain that feels like an ongoing colonoscopy without any of the drugs, chronic fatigue on top of the amount of Chronic I take. I fear I might never, ever come down, and I also fear each time I do that I won’t come up again.
Few of my current treatments are the same. Now I take two antidepressants; Lyrica (a nerve drug typically prescribed for fibromyalgia); the maximum dose of medical cannabis the state of New York will allow; liothyronine for my newly diagnosed hypothyroidism; ketamine and lidocaine creams; and a host of suppositories. My vagina and rectum have tried more party drugs than I ever could have imagined. Multiple times a day I pump them with ketamine, NSAIDs, Valium with a muscle relaxant, and cannabis suppositories, which aren’t worth the burning diarrhea.
On the bright side, I am lubed up and chilled out at nearly all times. On the dimmer side are the costs.
Financial: $800 a month in weed, gas to and from Syracuse weekly (my husband drives while I sing to drown out the sounds of my sorrow); and a monthly trip to NYC ($90 roundtrip on the Ithaca Platinum Bus, plus the cost of a decent hotel stay) to see a specialist who, while lovely, sticks more things into my butt, stomach, and thighs (and I have, reluctantly, relented to injections in my vulva and now, from a new pain management doctor, additional shots around my spine), injections that work on my hypersensitive nerves. None of these is a cure, each a mere holdover until the next surgery.
Emotional: Every time we drive the hour to the dispensary, I know they will tell me I can barely have any more medication. And I know I’ll have to temper my rage into something eloquent that will get me my drugs instead of a head bashing from the security guard.
Relational: I would like the physical and emotional bandwidth it takes to be the big spoon, at least sometimes. I would like to not be a crying, leaking, fainting thing, carted off to bed each night because once my night meds (nightamins) interact and the witching hour strikes, I’m deadweight, dross on my husband’s neck, a wilted toddler draped over his arms.
Miscellaneous: I’m skinny again, nearly back to my presurgeries weight, but even the weight loss is a lie. It—twenty pounds since July—is the result of hypothyroid treatment, stress starving, and digestive issues: nausea that keeps me from eating, sometimes for days, and constipation that prevents what little I eat from leaving my body.
Reputational: Despite their reassurances, I worry that my new colleagues will think I’m simply burned out from a year of so many highs, or from overcommitting to the many things I feared I couldn’t turn down because I was just happy to be in the room, and what if no one ever asks me for anything ever again, because as a recovered token, I know how quickly I may be laundered and replaced. I am trying, however, to sit down before I get sat down, before I become that sorry ghost. Aretaeus of Cappadocia calls the uterus “an animal within an animal,” a “living thing inside a living thing.” Mine is a dead thing inside a thing trying (not) to die.
So I’m scheduling a hysterectomy in addition to what I hope is a final search-and-destroy excision surgery. I’ve requested medical leave. Who will I be without a uterus, without one of the diseases that has occupied so much of my time? I have suffered nearly three hundred periods, starting from age eleven. Now my blood will dry up like a raisin in the sun, dreams deferred, yes, but a life sweetened, possibly?
I have resisted hysterectomy on two principles, my age and history. I have resisted because of the oversterilization of black women (who have the highest rates of unnecessary hysterectomies). I have resisted because modern gynecology was founded on the torture of my ancestors, used at the whims of a sado-racist who tore apart the bodies of enslaved black women and children like wishbones. His name, though it shouldn’t matter, was James Marion Sims. He forced archaic devices into black women and loosened the skulls of black babies with fish tools, and the many statues and monuments to him have only moved around, eulogizing the source of grief rather than the aggrieved.
If I store my uterus in a jar, like a talisman for the posterity I won’t create, I may pour formaldehyde libations for my foremothers, the wombless women; for Henrietta Lacks; for Lucy, Anarcha, and Betsey, the few named victims of Sims, though they all had names. For Saartjie Baartman and the trans and nonbinary people paraded around for science, on social media, by a society of spectacle, by virality. For my black, indigenous, POC trans and nonbinary folks with endo, for whom treatment and bureaucracy are extra, extra complicated. For those detained by the U.S. government at the border, without hygiene, many of whom live with endo and cannot access medications, let alone compassion. For the incarcerated women who have woken to find themselves sterilized without consent. For the uninsured and undiagnosed, I empathize, and, after I have put on my own mask, I hope to increase my activism around reproductive and insurance justice.
My surgery is scheduled, research conducted, but not too much research. The mind does not need to know all the ways it can hurt; I already know too many. Even after the surgery, I’ll need to monitor my mental health. I may need hormone-replacement therapy, may lose my ovaries or need a bowel resection. Endo may still grow back. I may end up worse off, prolapsed, a ghost of a ghost, a dead thing inside a dead thing at last.
But maybe, too, what if I get my life back? My friends can throw me a “Yellow Wallpaper” party and we can alternately dance and scream-cry and creep along the baseboards, eating crumbs of paste and actual cake, with gluten.
If I leave behind a literary legacy, I want it to be one of ethics, of irony and wit. Not that I died like one of my characters. A good story, I tell my students, often ends with a gut punch, a punchline, or beautiful lyricism. Let mine, I pray, end only with the latter, and not too soon.
ReadNafissa Thompson-Spires’s earlier essay on chronic illness here.
Nafissa Thompson-Spires’s work has appeared or is forthcoming in The Paris Review Daily, Dissent, Buzzfeed Books, The White Review, and other publications. Her first book, Heads of the Colored People, was longlisted for the 2018 National Book Award, the PEN/ Robert W. Bingham Award, and the Aspen Words Literary Prize; was a finalist for the Kirkus Prize; and has won the PEN Open Book Award, the Los Angeles Times Art Seidenbaum Award for First Fiction, the Hurston/Wright Award for Fiction, and an Audie Award. She is also the recipient of a 2019 Whiting Award. She currently works as an assistant professor of creative writing at Cornell University.
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