The Discreet Charms of Malady

Illustration for article titled The Discreet Charms of Malady
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First, oh, the stories you will tell. I awake from a four-hour surgery with an epidural and pain pump full of Fentanyl to sounds of a man dying on the gurney next to me, separated only by a threadbare curtain. Codes blare over the PA system, calling for every available physician to assist while next door, there’s the counting and then shocking of defibrillation, for what seems like half an hour. Just when I’m sure the patient is dead and begin crying, my attending nurse comes to check on me. “We need to get you out of here,” she says. “Too much stress.” Within moments, she wheels me into an elevator, past the man they are still electrocuting, and to a private room in the postpartum wing—of all the available spaces—with the explanation that anyone with an epidural recovers there. I ask about the man, but she shakes her head with a tight-lipped smile. “HIPPA?” I say.

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My grief for the man or maybe just timing causes my meds to stop working, and when a new nurse replaces the old one, she doesn’t believe me. Outside the room, she and another nurse laugh, “It was only a hysterectomy.” And I want to shout, “It was not only a hysterectomy. They removed 26 specimens of endo and scar tissue and dissected a bunch of my organs, and what kind of bedside or next-door manner is this,” but I’m too tired and too hurt and can only moan into my cell phone to my surgeon that they aren’t treating me well up here. She talks with someone in the wing, and suddenly, I receive all the pain meds I need and a refill of my epidural.


Then there are the drugs, or maybe your dysphoria, which requires the drugs, an alphabet of trials and mostly mediocrity, but some euphoria, too. And forgive the use of second person and the inconsistency in point of view, but sometimes a bit of narrative distance from myself feels pertinent, a dissociative persona the only way I can tell the truth.

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A is for antidepressants, one to make you sleep, one to allegedly treat your pain and the sadness that humidifies you and your airspace like a heavy fog, and one that relieves pain over time but while you await those results makes you so sleepy, you skip past every alarm on your phone and sleep until 3 or 4pm. B is for baclofen, a muscle relaxant; buprenorphine, which causes the worst night terrors and sleep paralysis of your life thus far, dreams you no longer remember in detail but the thought of which raises goosebumps on your arms. B is also for what you call the Barney Bag—or sometimes Doc McStuffins Bag, though you have never watched that show—the giant clear vinyl bag, filled with orange bottles of pills that didn’t work or that didn’t work for long, in which you tote your drugs from upstairs to downstairs and vice versa.

C is for cannabis, which you rely on, but which only works in concentrations so high, the state of New York will not allow them—live resins, waxes, and sugars dabbed from a pipe (nail) and requiring a butane torch, all of which you could obtain easily and legally in Illinois before your move. To be fair, every time you have used them, you have feared setting yourself on fire a la Richard Pryor. To follow the law, you stick to the weak sauce of 5 and 10mg THC pills and vape pens sold at medical dispensaries. K is for ketamine, a sublingual troche made at your favorite specialty pharmacy and delivered right to your door. If you take too much or mix it with the wrong medications, you hallucinate so intensely that, head forced back, eyes wide closed, you see matrices, fractals, the final frontier, stomp around the house imitating George Clinton and Bootsy Collins, botching showtunes and film dialogue, until your husband tucks you into bed. R is for prescription retinol to treat your stubborn hormonal acne, likely caused by the low capacity at which your liver is functioning from processing all of these medications.

 S is for suicide, a drug that ends it all for you but not for the ones you love. The night before your surgery, you beg your husband to let you jump from the tenth-story window of your hotel in Jersey City. He refuses. Days before your June birthday, when the whole world seems submerged in hell, you tie a poorly made noose of twine around your neck and pull tightly on it, ashamed of your self-absorption, ashamed at the knowledge of how many Black people before you, even recently, have uttered, “I can’t breathe” or had postcards of their lynchings and body parts, passed around and sold as souvenirs in person and on the internet. You are surprised, in spite of this, at how much the noose hurts, the pressure and the sharpness and the rush of blood. You untie the twine, massage your sore neck, and go for a walk near midnight, daring someone to shoot you in your hoodie, to put you out of your misery. No one does. Maybe no one can.


Besides ketamine, the best part of all is the food, glorious food you consume. After surgery, you meet your goal weight at last, too sick to eat much besides vegan yogurt, protein shakes, mandarin oranges, and clear soups. Weighing yourself each day becomes a highlight, self-imposed restriction is a reunion with an old, easy friend. Your husband and doctors worry over how skinny you look. An Instagram video of yourself confirms to you that they are right, but you take this as an opportunity to try on all of your clothes, to shop your own wardrobe and find each inch of give in the fabric a little ecstasy.

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But the COVID-19 pandemic hits, and suddenly you aren’t just in the house recovering peacefully, albeit hungrily; you are forced to stay at home. As police violence against Black people swells—or simply becomes more visible—the struggle for Black liberation becomes a hot poker, probing at your sadness and the six new wiggler worm incisions that cover your flat, almost concave belly. You worry obsessively about your little brother, who lives and works in Minneapolis; you text and call him late one night to no response, until he finally texts you back, “I’m fine. Don’t you know it’s four in the morning?”

Suddenly, your appetite returns—or your ability to suppress it flees—and you find yourself staying up late to watch TCM movies and eat sandwich after sandwich spread thick with almond butter and raspberry jam, so much of each that they ooze out all over your fingers, which you lick with delight, one of the few small pleasures you can indulge in the midst of all of the violence and increased despair, in the middle of this recovery process, which will not allow for sex or dancing or drinking or working out or hanging out with friends. And you can’t eat something sweet without a bit of salt, so you steal huge portions of chips or crackers from your husband while he is sleeping to accompany this stack of sandwiches.

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Aside from one called Niagara starring Marilyn Monroe, you couldn’t name a single one of these late-night classic Hollywood cinema films, but you could probably name the snacks. Binge eating at night has replaced restriction—though you still practice that during the day—and by July, six months post surgery, you have gained twenty pounds and three new therapists in addition to your old one: a nutritional specialist, a pain psychologist, and an eating disorder psychiatrist. You keep trying to write a joke, “How many therapists does it take to heal a writer/ an academic /a hysterectomy/ endometriosis/ Nafissa?” but the punchline never reveals itself.


The pain, too, is a comfort, I hate to admit but feel freer in doing so. It provides an occasion for the drugs. It means a break here or there without 20% of my typical guilt. It means fewer people—though not many fewer—ask me for things. Repeated major surgery pronounces me fragile, delicate, to be handled with care, like the meaning of my Arabic name. I’ve published two other essays about life with endo. In the latter, which came out four days before my third surgery, I essentially wrote an ultimatum: it’s either hysterectomy and a final excision of all endo or suicide. The responses to the essay were overwhelmingly empathetic, aside from the incredibly rude but prescient women who wrote to me, “Don’t do this. It won’t solve your problems.” They may have been correct. Six months later, I am still sad, still in physical pain every day still fighting suicidal ideation and depression on top of a reenergized eating disorder, still a hysterical woman, just without a uterus.

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I fear I carry a cloud of instability, too, that makes people afraid of what I might do to myself. I worry that my candor will backfire. With my great team of pain specialists, surgeons, therapists, husband, friends, and family, I pray I can remain in this body despite how desperately and frequently my spirit wants to escape it. And for those in similar or different but equally painful bodies and minds, I pray you find strength to remain in yours, too.

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DISCUSSION

theblightofgrey
TheBlightOfGrey

This is one of the finest things I’ve ever read on here. There’s so much, but here...

you see matrices, fractals, the final frontier, stomp around the house imitating George Clinton and Bootsy Collins

They should put that in Wikipedia under the Ketamine section for all time. It’s brilliant.