Ask Me About My Uterus

by Abby Norman

  I glanced over at the trash can and felt a strange exhilaration run through me. There, atop the wads of damp paper towel, were several wrappers for those stick-on heating pads. The very ones I had in my hand that I was going to wrap around my pelvis and lower back. There were women bent over the sink, caught in a wave of nausea or an unrelenting cramp. Women with sallow, tear-stained cheeks who had no doubt come in here to cry. When I finally got into a stall, my legs were shaking as I tried to lower my body onto the toilet seat. The bin for sanitary napkins next to me was practically overflowing, and that familiar scent of hot metal hung in the air.

  I realized that the talk I had planned to give wasn’t the talk I needed to give. As I stumbled out of the bathroom back to my seat, I started mentally making cuts. I would say most of what I had set out to say, but I was no longer interested in talking to the doctors in the room. I would talk to the women.

  I don’t remember giving my brief speech, because I was in pain, and nauseated—but I know I spoke to the patients. Specifically, I spoke about an online community I’d started called Ask Me About My Uterus. We curated essays about everything from menstruation and miscarriage to menopause. We’d amassed a readership of around 10,000, which had confirmed my suspicion that people—not just women—wanted a space in which to have these conversations. Preferably in the world, with each other. But until then, online mediums would have to do.

  While I allowed the essays to speak for themselves in terms of storytelling, I wanted to find a way to quantify the experiences that were being shared. Since I was going through all the submissions and had been, for quite some time, reading emails from women all over the world who would regularly send me their stories, I began to notice certain patterns. The only objective data I could offer up was what I could cull from their subjective experiences: What were the most common words used to describe these experiences? As the vast majority of those who had contributed were women, I was going back to my previous questions about how women talk about their pain. I tallied up the most frequently used words across all the essays that had been submitted to date, created a visual representation, and put it up before the audience for consideration. Of the top three words, the first two anyone could have guessed: pain and doctor. It was the third that had gripped me, and, I found, the people in the room before me: time.

  At the end of that session, when the speakers all sat up at the front in a panel to take questions, no one asked me any questions. But afterward, when the day was over and I was trying to navigate my way out of the building, women began coming up to me in tears. They were thankful that someone had spoken to them, about them.

  Dr. Reich, still using a cane after a recent knee surgery, limped over to introduce me to his wife and a few other physicians. They included Dr. Tamer Seckin, who founded the Endometriosis Foundation of America with Padma Lakshmi. When Lakshmi was in her thirties, Dr. Seckin was the first doctor to take her symptoms seriously. Together, they formed the EFA to help raise awareness. Along with the annual medical conference, each year they throw a gala event that helps raise money—the Blossom Ball. The 2016 speakers included Padma, Lena Dunham, and Susan Sarandon—all three of whom have endometriosis. Although I’d been able to attend the duration of the medical conference, I couldn’t afford a ticket to the gala event. When someone mentioned they needed volunteers to check people in and take tickets, I volunteered. I had to borrow a little black dress from Rebecca. (The one dress I’d brought with me had fit me the week before when I’d packed it, but my endo symptoms made everything about it—from its cut to the fabric—insufferable.)

  The medical conference lasted a couple of days, and although I took copious notes for later reviewing, I was in so much pain that I wondered at the end of each day if I’d wake up well enough for the next. Irony circled me as I sat there, downing my pills with catered coffee. I listened to some of the world’s best medical minds explain their pioneering, life-altering research about endo. I watched man after man after middle-aged man step up to the podium and proclaim that he could cure endometriosis—with a sense of bravado that made me squirm. I flipped through the program and saw my name under the conference faculty list, since I’d spoken at Patient Day, and realized I was the only person on the list without an alphabet soup of degrees after their name. I suspected I might well have been the only person on that list who actually had endometriosis.

  I suddenly felt ridiculous being there. My suffering hadn’t given me any real power, not the kind of power you need to effect change. What I needed was the education that endo had ripped from me. When I’d spoken at Patient Day, I’d opened with what I felt was a necessary disclaimer, a self-effacing remark that was totally improvised, but that I felt was necessary since it was obvious I was there despite any kind of legitimate medical education, something I’m still very self-conscious about.

  “Hi, I’m Abby Norman. I am not a doctor—but I might have been.”

  It kind of became my standard opener after that, but upon further reflection, I realized there may have been more than a grain of truth in it. When I got sick that September at Sarah Lawrence, a biology course was the last lecture I ever attended. It was aptly titled “The Biology of Living and Dying.” By the time I left Sarah Lawrence I certainly was more concerned with the biology of dying than I’d been when I’d started. And oddly enough, there were some prescient hints in my chosen thesis topic for the year: I’d been interested in studying the phenomenon of apoptosis, programmed cell death. While cells often die as a result of necrosis, which causes tissue death, apoptosis is a more intentional kind of demise. It’s sort of like controlled demolition. There are times when it makes sense, from a molecular biology standpoint, for a cell to orchestrate its own end, because it senses some kind of disturbance in the molecular field. Or, alternatively, it can be driven to do so by communications it receives from other cells. These intrinsic and extrinsic pathways were fairly under-researched until the early 1990s, but in the past twenty years, so-called cell suicide has become a fascination across multiple scientific disciplines.

  I’d become interested with the topic after seeing the word “apoptosis” in a textbook. I had looked up its Greek origin and found that the word meant “falling off,” as in the falling of leaves from the trees in autumn, which was perhaps my favorite thing in the world.

  But I never progressed much beyond that, because within six weeks of sitting in the quad beneath a tree whose leaves were only beginning to think about making their final descent, I was back in Maine, motionless in bed, listening to the trees snapping outside my window, trees that were sending their leaves plummeting to the ground, indifferent to their consent.

  But the trees were blossoming, white and pungent, on those little strips of grass along the median of the Upper West Side, as I sipped my coffee in a conference room at the Union Club—an interesting place to hold a conference that was concerned primarily with the nuances of the female reproductive system. It’s one of New York City’s oldest private men’s-only social clubs, and historically a very conservative one. As I mulled over the irony of this, I looked up to see Dr. Seckin standing over me.

  “We missed you at the faculty dinner last night,” he said. I blinked, stuttering out a response that indicated I had not realized I was invited. He laughed at this, saying of course I’d been invited. Someone else caught his attention and he drifted back into the crowd, and I slumped down in my seat.

  I had received a phone call a few days before but had completely forgotten about it, at least partially because I was feeling so ill. While they had been drinking sparkling wine and dining in some beautiful banquet hall, I was doubled over on the Q train trying to make it back to Brooklyn before I passed out.

  I’d been hoping that if I managed to rest each evening after the conference, by the time the Blossom Ball came around I might actually feel halfway decent. I didn’t, but I had promised to take tickets, so I showed up. I wore Rebecca’s black dress—in fact, I’d been wearing it all day. It
was simple and elegant but a little underwhelming for the occasion, which turned out to be filled with Hollywood glamour.

  I was nervous about volunteering, not because the people were famous, but because I felt like shit and looked even worse. They’d probably come down the hall and take one look at me and think they were in the wrong place. As it turned out, the opposite happened—and people seemed to be lining up in front of me to be checked in, somewhat inexplicably. The other volunteers laughed about it, and I couldn’t seem to find any rationale—but then I realized that it was actually quite simple: I was wearing my glasses. I’d vowed not to (as I’m constantly told they spoil my looks), but I couldn’t see the iPad in front of me without them. As one of the other volunteers pointed out, amid the glitz and glamour of the city’s most rich and famous, my unassuming and completely genuine dowdiness probably put people at ease.

  I had never seen such opulence before, though I figured out pretty quickly that most famous people (and their many, many handlers) are just as exhausted by the minutiae of public appearances or events as “regular” people would be. I specifically remember watching Allison Williams fix her hair in front of a mirror in the hallway before she hit the red carpet where all the photographers had squished themselves in; they proceeded to yell incessantly from every direction, issuing commands like “Over the shoulder!” and “All the way to the right!” She seemed resigned to it all, but I grew weary watching her. I just wanted to give her a snack.

  As the night wore on, I found a spot on the back wall where I could lean and watch people, although I failed to notice that my position, paired with my entirely black wardrobe, made me look like a member of the catering team. After being asked for crudités one too many times, I grabbed a glass of wine from the bar, straightened my back, and worked the room—albeit reluctantly.

  The room was full of interesting people, many of whom I had already met or had seen on television, so why was I hiding away in the corner? My attempts to bolster my energy were futile. I was just tired.

  It was getting late and I felt wildly irrelevant. I was slightly rejuvenated when I spotted Dr. Reich and his wife across the room. When I went to say hi, he invited me to sit down at his table—I protested, because tables had been reserved for the Guggenheims and other people who would donate money, and all I had in my purse was my Metrocard and a debit card that had a wad of gum stuck to it. I hadn’t been able to find a trash can earlier, as the gala was being held at one of those event centers that had trash cans that didn’t look like trash cans, and decorative ornaments that did look like trash cans but were not. So I’d just stuck my gum in my purse.

  I chatted with Dr. Reich’s wife and their son. I had a glass of wine. Suddenly people were interested in me, in my writing. All the doctors were interested in my experience with endo. They were alarmed, miffed, when I admitted I was still suffering. In fact, right before them in that moment, I was in pain. Several of them said different versions of the same thing: “Why not come to me? I’ll fix you.”

  And my answer was always the same: “I can’t afford to see you.” Hell, if I hadn’t volunteered, I wouldn’t have even been able to afford to buy a ticket to the gala. I couldn’t even afford to be standing there. I definitely couldn’t afford the Cabernet Sauvignon.

  At the end of the evening, I shook Padma Lakshmi’s hand and wondered if she was tired. I bid farewell to Dr. Reich, thanked him profusely for his help with my research, for taking me to lunch the day before, for being genuinely approachable. Then, I stood out on the curb in front of Pier 60, waiting for the Uber that Rebecca and her roommate had called for me, since I was too exhausted to take the subway all the way back to Brooklyn in the middle of the night.

  A group of people appeared next to me, a tall, sparkling woman in the middle of them. They were laughing, loudly joking around the way my friends and I used to in high school. A large black SUV pulled up, with its blacked-out windows, and I realized it was Padma and her entourage. I watched them pile into this car, my last vision of her just a foot in a strappy heel disappearing into the night.

  I chuckled. I bet she couldn’t wait to get out of those goddamn shoes.

  CHAPTER 8

  Nothing happens in contradiction to nature, only in contradiction to what we know of it. And that’s a place to start. That’s where the hope is.

  —Dana Scully, The X-Files

  AS THE INTERNET WIDENED MY world and allowed me to connect with the experiences of people across time and distance, I realized that where I wasn’t having these conversations was in my real life. Perhaps the text-based communication of the Web, and the distance afforded by cyberspace, made it easier for people to be forthcoming.

  So, when I got a message from a friend I hadn’t spoken to in years saying that she was getting ready to have a hysterectomy and wanted to talk to me about it, I was quite excited. I tried not to be too eager, though. Stefanie was thirty-five years old. It occurred to me that if she was having a hysterectomy at that age, there was likely a serious reason—and it may not be one to celebrate.

  When she bustled into the coffee shop in the small Midcoast Maine town we both called home, she didn’t look distraught. Maybe a little frazzled, but she was the mother of two children under the age of five, one of whom—a baby girl—she and her husband had only adopted just before Christmas. Quite literally just before: they got “the call” three days before the holiday and then spent the first few weeks of the year out of state while the adoption paperwork was processed. Although I really only knew Stefanie peripherally, I did know this about her: she was the epitome of mom-material, and she’d be the first to tell you that. “Growing up we played with baby dolls, we practiced taking care of them, we practiced giving birth to them,” she laughed, sipping out of a little cartoon-character-covered water bottle that probably belonged to one of her kids—but given her sweet nature could just as well have been hers. She caught me up on their daughter’s adoption story, and the bittersweet weight of it was not lost on me. I remembered quite vividly when Stefanie had lost her first daughter, Rose.

  The summer I’d met Max, I’d been in a community theater production of Peter Pan; Stefanie had been the Peter to my Wendy. My first impression of her, which endures, was that she was a remarkably delightful person. She’s wide-eyed and excitable, and as a children’s librarian and lover of Disney, she was clearly the perfect Pan both onstage and off. The kids in the cast adored her, and I’ll never forget how she got me the cutest cupcake—topped with a marzipan acorn—on the final night of the run.

  I’ll also never forget being backstage, my brow knit with concern as she sat on the stairs before me looking a bit peaked, when she’d told me—in strictest confidence, but with an unmistakable gleam in her eye—that she was pregnant. As it turned out, she’d been trying for quite some time, but had suffered two previous miscarriages, from which she was still understandably traumatized.

  In retelling the story to me now, years later, she began by saying that her periods had always been very intense. “I remember in high school writhing on the bathroom floor with cramps, vomiting, flushing hot, waiting for someone to take me home,” she said. “Even on birth control in college and when I was first married, that second day would still be rough. I was diagnosed with PCOS [Polycystic Ovarian Syndrome], which made ovulating tricky and just getting pregnant very difficult. My cycles in between were beyond horrible.”

  After the miscarriages, her periods took on an entirely new power: as an emotional trigger. “The sight of so much blood, the intense cramps, and this horrible sliding feeling as huge clots came out of me was just like my miscarriages,” she said. “I was immediately reliving all that crap again. When my own body is triggering the PTSD and the loop just keeps cycling through, it’s overwhelming.”

  When she finally got pregnant a third time, she was cautiously optimistic. She knew the statistics about miscarriage—which were higher in her case, since she’d already had two. Her voice grew quieter and she added, �
��And 1 out of 160 pregnancies ends with a stillbirth.”

  She was twenty-seven weeks pregnant when she stopped feeling the baby kick. Something was wrong, and Stefanie knew it, but she didn’t want to go to the hospital. She didn’t want a doctor to tell her—again—that she’d lost the baby. Several hours later, when she finally heard the dreaded words, she thought the situation couldn’t possibly get worse. Then, the doctor explained that she’d have to be admitted to deliver. This didn’t compute at first—wouldn’t she just miscarry the same way she had twice before? Then it hit her: she was too far along. What they meant was that she would have to give birth to her stillborn daughter.

  Over the next three days, she was “pumped so full of Pitocin it blew out my vein.” She delivered on November 21, 2011. “When the placenta wouldn’t detach, a whole crew of people suddenly filled my room. Holding onto my legs, ultrasounding me, pulling.” She did not get to hold her daughter for very long afterward, and was then sent to recover in the OB unit, where she could hear babies crying through the night. She asked the nurse for a fan to put in her room. “I left the hospital with a little purple memory box with her footprints, hospital bracelet, hat, and a few pictures. I had to call and arrange for an urn and flowers for a memorial,” she recalled. “We only just installed a headstone in 2016 because it was too painful to even think about. Too final.”

  After two miscarriages and a stillbirth, there was a lot of asking why. They expected that it might take a bit of investigation, so they were prepared to wait. But the first specialist they saw immediately wanted to test Stefanie for an autoimmune condition called antiphospholipid antibody syndrome, which causes the blood to clot too much.