Famesick: A Memoir by Lena Dunham - 13

Painful Evacuation

It seemed that there was nowhere I could rest. No bed soft and wide enough to really offer me respite, no room quiet enough, no city remote enough, to recoup my energy.

I was so tired that my sexual fantasy had become a scenario in which a faceless man tenderly said, “You’re exhausted, aren’t you? I think what you need is to head to bed for twenty-four hours straight.” Midway through, he would wake me with a bowl of buttered noodles, demand to see me house the entire thing, and then tell me to close my eyes again.

It seemed to Jack that all I did was rest, retreating to our bedroom during every dinner party, spending every Saturday there saying, “I’ll be up in an hour or so” until, at nightfall, it became clear I was never going to do it. It seemed to my parents that I refused to rest—after each medical crisis, after each hospital trip, after every promise to heal, I bounded back to do something useless but essential, like direct an Apple Music commercial that never aired, or guest-star on American Horror Story. Girls was over. The next thing had not yet begun. I had campaigned for Hillary Clinton, and literally all I got was this lousy T-shirt.

Jenni suggested we rent a house in Malibu for the month of August 2017. I could come out to LA, relax by the beach in that famed playground for Hollywood types who need summer homes that are as close to their main homes as most Americans are to the nearest supermarket. We’d drink orange wine, get buried up to our necks in sand by excited children in linen dresses, and dream about what it was that we wanted to make next.

By this point we were, without a doubt, a we. If Girls had tied us together for its duration, we had renewed our vows when it finished. And by vows, I mean overall deals with Home Box Office. We were having more frequent miscommunications. She wrote texts so cold, I’d cry reading the first two words. She asked for space during her trip to Iceland, which was confusing because she was already going to be in Iceland, and I was not. But when the time came to discuss renewing our deals, there was never any doubt we would do it together.

Our last negotiation had been three years prior, right as my book came out. When I received that 2014 offer from the network, I was gobsmacked—it made my salary for the first four seasons look like that of an intern. They were offering me the kind of raise that Sheryl Sandberg had demanded we lean in for, and I hadn’t even leaned in—in fact, if they’d asked me to pay them for those first four years, I would have gladly done it.

But the shock and awe, the celebration of these new terms, was short-lived when Jenni came to me, asking that we be open with each other about the numbers and negotiate together. She used Girlboss buzzwords to explain her logic—words like “ transparency” and “pay equality.” After all, we were the very people who had given Jennifer Lawrence a place to stick it to her male castmates about the pay discrepancy on American Hustle in the pages of Lenny. We were meant to be the faces of raising each other up, holding the people in charge accountable. It never occurred to me at the time that Jenni did not have to live the story I was living. Some actors joke that they work for free, and what they’re really paid for is the press. I’d say that I worked for free every second, and what I was paid for was everything I lost by doing that.

It never occurred to me that I could make the decision not to tell Jenni my deal terms, and so I opened the books like I was being audited—already guilty and afraid, sure that more money could only mean more people asking for more things, and more reasons to be told I didn’t deserve it. When it became apparent that Jenni’s offer, while generous, did not match mine, she made it clear, in no uncertain terms, that she expected me to hold fast until it did.

I’ve never been comfortable talking about how much money I make. I only know a few people who are, and I don’t like them very much. I’ve never even been comfortable having money.

“Someone’s gonna have it,” my mother once told me. “Why not you?” I could think of a million reasons.

While I’ve made generally sound financial decisions—no flashy cars or diamond chokers, and my biggest expense is pet care—every reckless one has been because someone knew the code to my personal ATM, which was to play into my deep and abiding shame. I’ve funded films that were never made and given to charities that never existed, allowed myself to be overcharged and underserved, bought dinner for people who then tweeted about how little they enjoyed our meal together.

“What are you so fucking guilty about?” my father once asked. “Since you were five, you’ve been walking around like you killed a man in Reno just to watch him die.”

But somewhere, somehow, I feel like I did.

Jenni was my best friend. She was my chief protector. I was sure that if I didn’t play ball, I would lose her and, in the process, the only safe place to land that I could imagine.

“You’re a genius,” she once said. “And, like most geniuses, you barely know how to walk down the street without being mowed down by a bus.” The implication was that I’d keep being a genius, and she’d keep looking out for buses. Never mind I’d already been hit by quite a few.

My agents called me—five on the line, which had never happened before—and told me that they could not, in good conscience, let me make my deal dependent on Jenni’s salary being equal to mine. HBO wasn’t going to offer more money than this. They were simply going to take what I was being offered and divvy it up so that it looked equal on paper. Her offer would go up. Mine would go down.

“She’s my best friend,” I repeated, over and over, as if it were an explanation that would make sense to a group of people who would have probably shot their only sibling just for a chance to be thanked at the Emmys.

“Never forget,” said Peter, the one my mother had called so many years ago, sure that another Great Neck Jew would know how to take good care of me. “It’s not called show friends, it’s called show business. Would she do the same in your position?”

As I weighed the choice, Jenni and I were due to fly from New York to Los Angeles. We had just launched our production company, which we named “A Casual Romance” after an album cover by a band called Nightwind that Jenni had posed for as a child. In the photo, she was ten or eleven, dangling from a rope swing with a blond boy the same age who had the kind of Cassidy Brothers good looks that were popular at the time. She was wearing a plaid shirt, knotted at the waist, and cutoff jean shorts, beaming confidently at the camera. We always joked that the only difference between us was that she’d been popular, and it almost felt as if—with the magic of time travel—I had been popular, too, because that younger Jenni, the one flying through the air against a blue to gray ombré seamless background when I was not yet born, had chosen me as her person. “Best and always,” she would say. “I need you, my children, and that’s it.”

We were flying out to open our first office, and Jenni had hired a decorator friend to set it up—someone known for filling the houses of the wealthy with deadstock vintage fabrics and lacquered trays and art that was quirky but ultimately inoffensive. The teal velvet sofas and Moroccan rugs were being pulled into place, the rustic bookshelves and long butcher’s block conference table were secured, and we were having a party to celebrate. I wasn’t quite sure why we were having a party for a production company that didn’t yet have a credit to its name, but another difference between Jenni and me—it turned out there was more than just the fact that she was cool in high school and I wasn’t—was that she loved throwing parties. Nearly every Sunday, she’d cook a big meal, throw together a charcuterie board, and invite everyone in her orbit to roll through—“adult wine time,” Jack called it, since whenever we ended up there, he was cornered by a man with a glass of rosé, desperate to describe his record collection.

On the plane to LA, instead of our usual banter fest, Jenni put her headphones on, curled inside her hoodie, and went HAM on the in-flight entertainment. Every time I tried to catch her eye, motion to a passenger asleep with their mouth agape or Stacey Dash from Clueless wearing a bedazzled cowboy hat, she averted her eyes. That night at the Sunset Tower, I dressed for the party in a state of panic, selecting a pale blue sleeveless jumpsuit and pointy-toed black pumps. I walked into our office like a crasher—the only concession to my existence, it seemed, was a salon wall-style hanging of a group of my father’s prints, featuring Pepto-Bismol pink women with their vaginas and assholes agape.

As I looked around for Jenni, people stopped me. A drunk female showrunner, newly celebrated for a piece of work advancing queer representation, shook me by the shoulders. She wanted to talk about the reaction to my book: “The reason that people attack you is that they LAMINATE onto you,” she repeated again and again. “You scare them, so THEY ARE LAMINATING.” I wasn’t sure what she meant—projection? Transference? But all I could picture was an image of myself, cut out like a paper doll and flattened, encased on both sides in shiny plastic, hanging from a lanyard at a conference.

I could see Jenni out of the corner of my eye—floral dress, red lips, hair carefully messy. She was laughing that laugh I loved so much—head back, mouth wide open—with someone who wasn’t me. I considered a future where every day was like our worst—the ones where I showed up to set and, for reasons unclear to me, she said things like “Please tone it down at least until I’ve had coffee,” then disappeared. She was always the first person I texted in the morning, and I could usually tell from her response—whether it was “good morning my one true love” or “hey”—the sort of day that was in store. On the bad ones, it was all I could think about, in limerence like a dog for its owner.

Which is why I beckoned her into our shared office space, the one with the custom double desk we had ordered so we could work facing each other.

“What’s going on?” she said. “We’re in the middle of a party.”

“I’m not going to take the offer,” I told her. “I’m going to wait until we’re paid equally.”

She locked me in her arms and cried: “You’re my soulmate.”

My agents were shocked but knew they couldn’t get me to stray. I hadn’t asked for advice from Judd, or any other adults who might know how to handle something this confusing. I was afraid that they, too, might tell me I was crazy. That money is security in this world. That this job goes up and down, and we have to take it when it’s offered.

My agents said they could probably get me a bonus disguised as acting money—the one job that people could clearly see I did alone, since the hours of writing and rewriting, plotting and managing, were invisible. But I didn’t want to risk it.

Now, in August 2017 and into our second deal as partners and equals, I stayed at the Malibu house for a total of three nights. It quickly became apparent that it was going to be a very social month—brunches and beach hangs, Jon Hamm lounging in a swimsuit with a drink, Busy Philipps rearranging her necklaces over a caftan, some random music supervisor who just happened to be passing by smoking a joint and eating a breakfast taco. With the exception of one trip to the farmers market, I didn’t leave the cool basement bedroom I’d been assigned because it was “farthest from the noise.” It had been a year now since I was told to take my Klonopin up to four times a day, and so I always did that.

I had always planned to head back east for a few days for a wedding, but as I left—hugging the kids, explaining I’d be gone until Monday—some part of me knew I would never set foot in that house again. I also didn’t make it to the wedding (one between lesbians, the only kind I even enjoy) but instead curled in the guest room of my parents’ house in Connecticut.

I was having another pain flare, bleeding heavily. Dr. Seckin agreed to see me on a Sunday night in the Lenox Hill ER; my father drove me into the city. While car rides had always been our time—when we talked about everything from how Pete Best must feel about the remaining Beatles to whether time is, in fact, linear—we were unusually silent, stilted even. I must have been afraid that if I opened my mouth, it would all come tumbling out. Jack was still in the studio with the singer, who seemed to me both very young and impossibly mature, so even-keeled and focused that it made me want to throw my toys out of my pram. I was subsidizing the rent on a Malibu party pad with a firepit that I’d never, ever use. I hadn’t written anything in months, save for some cryptic Instagram posts about the nature of female pain accompanied by photos of my emaciated body in the bathroom mirror. And on top of it all, a steroid shot meant to calm my joint pain had resulted in a condition known, in medical terms, as “moon face,” wherein overnight your cheeks round out like you’ve just had your wisdom teeth removed. I couldn’t lie to my father, so why say anything at all?

Dr. Seckin examined me and said my uterine lining was unusually thick—despite stopping the injections, the side effects of having my estrogen suppressed remained, and had made my periods irregular and, somehow, even more painful. My body was trying to pass large clots. He suggested a D&C (dilation and curettage), the same procedure used in surgical abortions. I had already had one, the year before, which he performed at a clinic in Midtown that specialized in cosmetic labiaplasty but gave him a space when he had patients who required discretion. Decorated in shades of deep purple, the recovery bays were like tiny hotel suites—single beds with shiny paisley duvets, plastic flowers in crystal vases, abstract art of a woman covering one eye with a coy hand. Waking up in there, I felt as though I were working at a New Orleans brothel, passing time before the next john arrived.

But this one would be done at Lenox Hill—same routine, IV pain medicine to get me through the night and five a.m. surgery. After it finished, and I’d come out of the hazy warmth of anesthesia, cramping terribly, Dr. Seckin appeared at my bedside and asked that my father leave the room.

“It is time,” he said, with a pregnant pause, “that I ask you if you are happy.”

Dumbfounded, I looked at him as if he’d asked me what it was like to be a cheetah and whether I was enjoying my life in the savanna. It wasn’t that I didn’t have an answer, but rather that the question seemed meant for a different sort of creature entirely.

He tried again. “Is everything peaceful in your home?”

How could it be, I asked him—for starters, I had shaved my head, and it looked pretty cool, only for my face to suddenly swell to twice its normal size a week later, necessitating that I buy a number of jaunty straw hats. But furthermore, I couldn’t eat. I couldn’t walk. I couldn’t fuck. My boyfriend was always behind a locked door, the dull thump of a synthetic beat the only sign of life. My business partner was in Malibu making a fricassee for Elisabeth Moss, and on top of that, I no longer had my job, something I’d imagined would feel as freeing as a snow day until it actually happened.

He said that unhappiness was the enemy of healing, that he had seen too many women become victims of this illness—let it define their identity, yoke them to the wrong people, the wrong drugs and—ultimately—“very sad lives. But it doesn’t have to be this way.”

“I’m trying to be happy,” I told him. “But I feel like I am cursed until this stops.” And for the first time, I asked: “Can’t you just take it out?”

“Take what out?”

“You know. My uterus. The whole thing.”

“DON’T say that,” he snapped. “I’m sorry to get heated. But taking out a woman’s uterus,” he explained, “is something I do only if I have no other choice.”

I clutched his hand. “I’ll adopt. I don’t need to have biological children. I really don’t. Who would want more of me? And anyway, if I’m like this, I can’t even have children in the first place. I won’t be able to play with them, pick them up, be there at all.”

“No. Inside the uterus is the woman herself. Her spirit. Her passion. It is like reaching inside and yanking out her very soul. I have seen it before my eyes—women change into people they do not recognize. I cannot do this to you.”

But since when did I recognize myself?

During my unusually long and oddly shaped summer of attempted rest and relaxation, my only missives to the outside world were about my health. Instagram stories of me lying prone in bed (naked, naturally, with only a few honeypot emojis to cover the bits that everyone had seen already). An essay for Lenny about the anxiety of living with chronic illness, meant to explain why we were canceling a planned twelve-city tour to promote our newsletter. Photos of my stack of books: The Body Keeps the Score; Woman Heal Thyself; The Medical Medium (who suggested, as they all suggest, gallons and gallons of celery juice).

And then one day, Jenni’s ex-husband, the CEO of Lenny, forwarded me an email. It was from a woman he had met on Hinge and gone on several dates with, nothing serious, but she was asking if she could get a note to me. This happened a lot—usually it was a screenplay someone hoped I’d read, a short to watch, a book to blurb. Best case scenario, it was telling me that they related to my onscreen depiction of OCD. But this was something else:

Hi Lena,

I’m a friend of Ben’s. I hope I’m not overstepping here, but I read your book and took note of all the chronic health issues you’ve been having. That coupled with your comment on being “double-jointed” really resonated with me.

There is a rare genetic collagen disorder called Ehlers-Danlos Syndrome Type III-Hypermobility (EDS)/Joint Hypermobility Syndrome ( JHS) that affects connective tissue including joints, veins, and organs. Endometriosis and pelvic pain disorders are known co-morbid conditions of EDS, along with food sensitivities, fatigue, insomnia, digestive and skin problems, difficulty regulating body temperature, and anxiety-like behavior. I say “anxiety-like” because the symptoms patients exhibit mimic psychological anxiety, when in reality, they are a result of dysregulation of the autonomic nervous system. I believe it is likely that you have EDS given all the symptoms you described in your book, even down to the hives episode you had as a baby (Mast Cell Activation).

The reason why I felt compelled to reach out, is because it is important to have a diagnosis to prevent permanent joint damage that well-meaning yoga instructors, physical therapists, and chiropractors can do to your body. If you are considering pregnancy, you will want to consult a geneticist to weigh your options regarding carrying a baby. Party tricks with your fingers and other hypermobile joints should be avoided. And any surgeon operating on your body should be made aware due to potential poor wound healing post-surgery. Lastly, knowing it’s not all in your head is a beautiful thing.

Yours,

Marjorie

I read the email again and again—recently, in a video for Vogue ’s website, I had shown off my lifetime trick of being able to bend my thumbs back behind my hands. My grandfather—someone known for being sickly, much like my now-departed uncle, with joints that seemed to dislocate with little prompting—had also had these party thumbs. The hives hadn’t been limited to childhood—they’d appeared at seemingly random intervals, prompting changes in laundry detergent or the hope that a new brand of foundation was the culprit. My body temperature had always been a source of confusion—sometimes, I shivered on a hot beach. Other days, I’d walk out into the New York winter in just a T-shirt, inspiring confused looks from passersby, as sweat dripped down my face with ice still coating the sidewalk.

Poor wound healing had been on my mind ever since two operations ago—that was how I counted time now—the one that landed me on the floor of the bathroom at the Met Gala, staring up into the concerned face of Maggie Gyllenhaal as she repeated, “I know, this place is overwhelming,” sure I must be having a panic attack. A few days after the operation, just as the keyhole incision was meant to be closing, I’d felt something odd—not painful, just strange. Not a rip, but a separation, the sense that my belly button had raised itself half an inch. Pulling up my nightgown, what I saw wasn’t a scar but an opening—no bigger than a pencil eraser—releasing drops of pale pink goo. When I tried to tug at it gently—just to see what mysteries it held—it opened even more, now to the size of an eyeball, winking up at me. The ER resident who I showed it to was confounded, accusatory even—had I been following surgical instructions? Really? Was I sure?

No, sir—I’m like Rosanna Arquette in David Cronenberg’s Crash, creating new holes for James Spader to fuck. Yes, I’ve been following fucking surgical instructions, Doctor.

But the one that really got me was “anxiety-like behavior.” One of the reasons I’ve always loved rabbits so much was because of the way they moved through the world, taking quick, shallow breaths, hiding behind whatever was convenient, emerging only at dusk to take paranoid laps. It isn’t because they’re crazy that they act this way—it’s their physiology, built into the DNA of who and what they are. Maybe I saw myself in them. And within the words “anxiety- like behavior” was the possibility that I hadn’t just been born with a shaky center, with the gene for terror.

As I dug deeper, even more symptoms checked boxes I didn’t know needed checking. Mysterious bruising, constant nausea, lifelong migraines, acid reflux, a paradoxical reaction to alcohol that includes a racing heartbeat and increased agita.

Marjorie suggested I go and see Dr. Howard Levy, a specialist at Johns Hopkins who was helping to refine the diagnostic criteria for the illness. A week later, I set out for Maryland on a day trip to meet him.

Dr. Levy—who looked a little too much like Eugene Levy for it to be a coincidence, although he assured me he had no connections to show business—interviewed me for over an hour, asking remarkably specific questions about everything from childhood (hives, febrile seizures) to college (mono, migraines) to my bowel movements (better, now that I’d ceased to need to sleep on the toilet).

Then he took me into an examining room, where I changed into a gown and he palpated my joints, measured my overextension with what looked to be a fifth-grade ruler, and tugged at my cheeks like an overexcited great-aunt (EDS patients often have unusually stretchy skin, which is why I diagnose YOU, Jim Carrey!). He looked at my flat feet, my knock-knees, and the wound on my stomach which, months later, had still not quite closed. He nodded approvingly every time my body did something out of the ordinary.

I left with a diagnosis. “So now you’re my doctor?” I asked, as pathetically as the Ugly Duckling inquiring if a fox is its mother.

“This is a research clinic,” he said. “I just diagnose. I’ll try and find a specialist in your area, but the fact is that most areas don’t have specialists.”

Marjorie was right. Knowing it wasn’t just in my head was a beautiful thing. But the idea of going home announcing a new diagnosis, a new thing to cure…I could just see the look on Jenni’s and Jack’s faces. They had been so empathic around that first surgery, so saddened to see me in pain and so sure that it would be the solution. But now that every solution just made more problems, a snake forever eating its own scabby tail, everything they said—and didn’t say—contained an itchy grain of doubt. I understood—I had felt it, too, in an earlier life, that skepticism. I’d sniffed this weakness in women, and hated what I smelled—a pathetic choice, a desperate bid for attention and empathy while not doing anything to deserve it. The girl who was pale and sweaty and said she could only stomach brownie cake batter, which she ate from a vat in the library, because anything else made her sick. The girl who had to have her jaw wired shut senior year but still tried to make announcements in assembly—“Submit to the lit mag,” she shouted through gritted teeth, biting a straw at lunch or sucking down a protein shake. Come to think of it, was Sarah in my seventh-grade class really so allergic to nuts that you couldn’t even eat a peanut butter sandwich before entering the room with her, or was she just a weird horse girl who wanted to control us all?

At this point, I was starting to understand that illness wasn’t just a town I was passing through, but a city that I was going to pay taxes in. They were still hoping for the occasionally fragile girl with the random rashes and shitty periods they’d agreed to love. Nobody understood how much pain that girl was already withstanding from the minute she started walking. Not even me.

As a baby, I never crawled. “You rolled,” my mother said. “Until one day, so late that we were scared, you pulled yourself up and started walking.” I never did get the hang of walking, much less running. I watched the other kids at school in awe, wondering what it must feel like to fly so free in your body and enjoy it. I was tiny, yet everything felt heavy. I was complaining of a pulled neck muscle at six, a bad knee at eight, sciatica at sixteen. I was just rolling and rolling and trying to keep up.

“You’re the goose that lays the golden egg,” my father had once told me during Girls. He didn’t mean it in a nice way. He meant that the goose may be well-fed, well-nourished, coddled, and celebrated. But nobody protects that goose because they love it—they protect the eggs.

And if the goose fails to make eggs, it goes from being a coddled pet to having its head chopped off faster than you can say “duck liver pâté.” Never mistake maintenance for care, attention for love, or even love for empathy.

I decided I would devote the fall to healing myself. I cracked a new notebook, writing hopefully on the first page: HEALING JOURNAL. I adopted an anti-inflammatory diet, eliminated nightshades and citrus, green tea and tomatoes. I did yoga with Beth, a beautiful blonde who could do graceful backbends. I got regular IVs full of unnamed vitamins and minerals, the bags of liquid as yellow as a drunk girl’s piss. I meditated, saw a woman Katy Perry recommended at a party who placed smooth river stones over every inch of my skin and then talked me through a blastoff to a planet of wellness (she even did different voices for the captain, the other passengers), wrapped my midsection with a castor oil pack as per Gwyneth’s guru, wrote notes to my uterus encouraging her to take back control, bought a number of wigs online and experimented with being a wig lady, and let the alternative medicine doctor scream at me: “YOU ARE LETTING JENNI FUCK YOU WITH HER METAPHORICAL COCK, SHE’S JAMMING IT IN WITH NO LUBE! ARE YOU JUST GOING TO TAKE THAT!?” before he shared an allegory about a man and a coconut tree. I threw out dozens of pairs of bloody underwear, then gave up and realized they would all just be stained.

And through it all, the pain was there, like that friend with a borderline personality who you’re convinced you can control until it becomes clear she’s going to do to you what she’s done to all the others. There was no moment of any hour of any day where I did not feel pain. It assumed different forms and different levels of intensity. It had different shapes and versions. But it was always with me. I was tethered to it like a smoker to their pack, mollusks to a whale, a mother to their baby.

I had never had a single doubt about wanting children. Not one, since the day I could understand how families were made. And pregnancy had been the glorious beginning of that vision. As a child, I had stuffed my shirt with fresh laundry and marched around the living room, beaming. Later, wearing a prosthetic belly for my television show, I stroked it subconsciously with such natural ease that Jenni had to tell me I was creeping her out: “Can you please stop stroking that while I’m talking to you?” All the men on the crew were extra sweet and careful with me; they looked at me like I was carrying the messiah, even though my stomach was silicon, ordered from Japan, smelling oddly like farts. I felt the innate power of pregnancy, and I had looked forward to the moment when my stomach would swell naturally and wouldn’t be made of the same substance as breast implants.

But I knew another thing just as deeply as I knew I wanted a baby: Something was wrong with my uterus. I could feel it, deeply specific yet unverified, despite so many tests and surgeries and so much medical dialogue. They had operated around it, in it, stuck cameras up it, inflated it with fluid and air to examine its veins and muscles. They said that they didn’t see why it wouldn’t do the job. I had endometriosis, yes, a lot of it. I seemed not to be getting well. But pregnancy, anecdotally, seemed to ease a lot of women’s symptoms. In fact, doctors in ERs all over America had suggested it as a cure. As if that were a reason to have a child. As if there’s such a thing as reason when it comes to having a child.

I was convinced that the uterus I’d been given was defective. And while I’d been dealing with endometriosis for a decade—longer, if I looked back at my teenage history of cramps and pelvic pain—and had had surgeries measuring in the double digits, no doctor had ever confirmed this for me. They’d told me I had a slightly higher chance of miscarriage. They’d told me not to wait forever to “get it going.” But through the forty-plus vaginal ultrasounds where I was forced to stare at the black emptiness of my uterus, they’d said things like, “Look at those egg follicles! You better be careful, or you’ll be pregnant next week!” Their goal had been to preserve my fertility. That was what they had considered their primary job. For many doctors, it was a calling above curing pain, above making life livable for the person suffering now. Our whole culture values the potential of life more than the existence of it, and women as vessels for that life more than as sentient beings. So doctors always pointed at my ultrasound and tried to give my womb a nice compliment—“Look at her, she can do it!”—and I’d laugh and I’d smile, but I knew that the blank space, the black hole captured onscreen, was all I’d ever see.

And I took the medications. And I felt the side effects. And I had the surgeries. And I had some more of them. And I paused and unpaused life, started and unstarted fucking, hoped and unhoped things would change, until one day in November, after I had run out of healthy things to try during my autumn of health, my mother and I marched right into the Lenox Hill emergency room and announced I wasn’t leaving until they took my uterus. No really, take her.

They didn’t consider this request lightly, the doctors. Medical malpractice suits are real, and women are attached to their uteruses. Sometimes it took a while for the reality of infertility to set in, the rage. So the doctor needed evidence he was operating on someone resolved enough to give consent and never take it back. They also had to determine the operation was medically necessary and advisable, which involves a group of doctors deciding how much pain it is reasonable for a patient to live in. Pain, by its very nature, is personal—it’s one of the few human experiences that is in no way collective. We have no ability to feel another person’s pain. We can imagine it. We can empathize with it. We can look at their wounds and listen to their words. But we can’t know how it feels to be inside their body.

Furthermore, how much bleeding should a woman have to do? Is it only a problem once it becomes life-threatening? How much should she cry when she’s getting fucked, and how much should she dread the act? How many things should she have tried, and how many of them have to fail? Who gets to decide, in the end?

And so, while I was lying in a hospital bed, being pumped full of what was essentially medical-grade heroin to handle the pain, I wrote a thousand-word essay on why, given the circumstances, I was sure I could handle losing my uterus before I turned thirty-two.

“I know that a hysterectomy isn’t the right choice for everyone, that it isn’t a guarantee that this pain will disappear and that my surgeon will be performing it not because I am in danger of dying but because I am suffering, and also due to my deeply held, essential and—to my mind—feminist belief that women should be able to make a choice about how they want to spend their childbearing years.”

My longtime therapist wrote a note, too, insisting I was sound of mind enough to make this choice. She was under no illusions about the toll the last years had taken on me, but she was—unlike so many people around me—still of the belief that I had an understanding of my choices and the right to make them. That was a gift I will always be thankful for (I recently found a photo of her from the 1980s on eBay, when she was a downtown performance artist, and bought it for thirty-six dollars, even though we haven’t spoken in years). I talked to another therapist—male—who my doctor favored, who suggested three more sessions to get at any “deep-seated ambivalence.” All the while I writhed in pain and muttered Girl, Interrupted –style musings at the interns who stopped in to see me. I chose one particular doctor as my target, just to stay alive and focused.

“How old are you?” I demanded to know. “And where do you live?” This had to be some kind of reverse HIPAA violation, but he told me he was twenty-seven, which enraged me. What did he know about life? When had he ever felt this pain, been caught in such a limbo? Why did he always greet me by saying, “good afternoon,” even when it was clearly nighttime? He was stingy with pain medication and asked why I didn’t just go home and wait for my surgery there. “You’ll get better sleep.” I told him I never slept anyway, even though I was always in bed.

In the end, I spent fifteen days in the hospital before they performed my hysterectomy. During that time, I had gotten very used to the gasp of pity from nurses, doctors, nutritionists, interfaith chaplains—the subtle intake of breath when they looked at me, thirty-one but with the face of a nineteen-year-old, blue-haired with puppy print pajamas, curled in the hospital bed. I learned not to hate it, that gasp. I realized they were simply sorry. Being sorry for someone you didn’t know was kind, even if it felt condescending and like the false utterances of empathy favored by women on reality TV. (I had been watching a lot of feuding housewives from this bed. The ones in Australia were really fucking out of control.)

Six days into my stay, in a final attempt to quell the pain without removing my uterus, a procedure was performed, a dilation and curettage (like a termination minus a fetus, and this was my third). I had a bad feeling about it, but Dr. Seckin said he could not in good conscience do the hysterectomy without trying this first. But it didn’t go as expected, and I ended up in a recovery bay on an IV drip of Pitocin, the drug used to induce labor. The bleeding was still heavy, and they needed my uterus to contract—but once again, it wouldn’t comply. So they upped the dose of Pitocin, and what I felt broke a mind that was already bent. I now understand that I was essentially in labor, unassisted, for seven hours. During this experience—my body in this false labor, as I bled through diapers on a gurney in a windowless room—my back seized, and I grunted, deep and guttural like a tennis pro. It wasn’t lost on me that this was the closest I’d ever come to birth—but beside me was not my husband, ready to greet our bundle of joy, but only Mary, a nurse from Staten Island who wondered aloud why I was so often nude on television.

During this, pain medication didn’t touch my discomfort, and so they kept administering it until my blood pressure plummeted, a combination of large quantities of opiates and pain-induced delirium. I was only intermittently aware that my father had appeared in a chair next to me, watching me with a look I’d only later come to understand as PTSD being created in real time.

I myself didn’t know what was happening—I tried to speak, but the words came out slow and soft, and I was shushed gently by my father and then my mother, who also materialized at some point, as if they wanted to save me the effort.

If there were any upside to this episode, it was that by the end—which was just the moment I stopped bleeding as much and collapsed into an exhausted sleep, as if I’d run a 5k—it seemed as if my doctors might finally be ready to concede that my uterus really was The Bad Seed: once a cheerful little girl with blond pigtails like Rhoda, the evil child from the classic film. Now angry, exhausted, a home for no one.

The night before my uterus was removed, my nurse was a model-gorgeous woman named Georgia, sardonic and odd like the sidekick on a TV show who producers pretended was less stunning by slapping spectacles on her. I lay in the bed, knees to chest and clinging to a rainbow stuffed dog that Jack had bought me at the Cancun airport, and made her google things on the giant computer she hauled from room to room to take patient notes and scan our medication.

I wanted to find out what they’d do with my cervix once they’d removed it, what a cervix was even shaped like (a donut) and if they leave a hole from your vagina into your insides (the answer: no). I asked her to search whether women felt an immediate hormonal drop, like the period from hell minus the period (varies). Lastly, I asked about the likelihood of my ovaries dying before I could harvest any eggs, of menopause setting in. Of finally losing every part of me that made me, to very uncreative people, a woman.

“Is there any chance you could be pregnant?” she had asked, as she gave me my meds one last time.

“Well, not after tomorrow,” I said. I wished there was a German word for when nobody liked your jokes, but you made them anyway.

I was holding back tears but also doing a stand-up routine as my family walked behind my gurney, headed to the operating room. “Hey, who here feels like giving up their uterus? I hear there’s a two-for-one sale on the operation. Dad, join me?” I wanted to cry so badly, but I knew it wasn’t welcome here. My sobbing could easily be seen as doubt, and doubt might cause them to reverse it all. I was already mourning, but I wasn’t in doubt. I had to keep it light. There would be no tearful goodbye.

In the operating room, the lovely anesthesiologist let me select a favorite Rihanna song, and I tried to absorb the gravity of the moment—at least a dozen people dressed in blue scrubs with face masks standing over me, attending to the endless busyness of the OR. I had to admit I was really choosing this—I had given up on more treatment. I had given up on more pain. I had given up on more uncertainty. The medication entered my bloodstream, and my vision blurred pleasantly. I wouldn’t have to feel anything for a little while.

I woke up surrounded by family and doctors eager to tell me I was right. My uterus was worse than anyone had imagined. It was the Chinatown Chanel purse of nightmares, full of both subtle and glaring flaws. In addition to endometrial disease, an odd humplike protrusion, and a septum running down the middle—in effect creating two uteruses, one behind the other—I had had retroperitoneal bleeding, aka my period running in reverse, so that my stomach was full of menstrual blood. My ovary had settled on the sacral muscles in my back, which was affecting my gait—hence the need for a walker that past summer. Let’s please not even talk about my uterine lining. The only beautiful detail was that the organ—which was meant to be shaped like a lightbulb—was shaped like a heart. In the photo I insisted my doctor show me, it was lying on a blue surgical cloth, a shiny cartoon character, my fallopian tubes reaching out like arms. All she needed was some white gloves, and she could have been a children’s character.

Jack showed up two hours later, sweeping into my hospital room with some bodega flowers. He was wearing hotel slippers and Bermuda shorts, a hoodie covered in patches.

“Sorry, the tour bus got stuck in the tunnel—I texted to see if you guys could wait.”

“Yeah,” my father said, looking like he was considering grievous bodily harm for the first time in his life. “Surgery is like a train, not a tour bus. You either make it, or you don’t.”