Ask Me About My Uterus

by Abby Norman

  When I first got sick, I denied it, believing that I ought to be able to will it away. There was no “talking myself out of it,” and if the Herculean willpower I’d developed as a child was capable of deferring an illness, it did. That’s how I knew when it all began that something had to be truly wrong.

  Sitting across from Dr. Modell, with his sour mouth and mocking gaze, I knew that none of that mattered. Only after stating his unequivocal belief did he do a cursory neurological exam—I assumed so that he could document that he did—and I loped through it as my brain tried to process the opprobrium I’d sat through. As he made to reaffirm his stance, I straightened up in my chair and looked at him as calmly as I could. It was clear that he had no intention of ever seeing me again, which was fine by me. All the same, I did have something to say. Even if it was only so that I could hear it.

  “Twice before I have been dismissed this way,” I said levelly, holding his gaze. He squirmed almost reflexively. “If you look at my chart, it’s there.”

  He hesitated, then sighed, seeming to decide to humor me. “You’re clearly very intelligent. Very clever,” he enunciated. Bright and wound-tight, I thought, wincing. I stilled myself, taking in a deep breath before I continued.

  “This conversation—both times, this is exactly how it started. I’ve been here before. Then months, years went by—and I found the answer both times. But by the time anyone listened or took me seriously, these things had gone on long enough to cause damage. To erode my quality of life. I lost years not just to the symptoms, but the search.” I exhaled, my shoulders sinking slightly as I became aware of how exhausted I was. “I never wanted to be right,” I said firmly, tears making my eyes ache. “I never wanted there to be anything wrong. But both times, something was. In this current situation, given those experiences, I don’t think it’s too difficult to comprehend why I’m attempting to understand what’s happening now.”

  He seemed to consider this a moment, angling himself back in his chair, away from me.

  “Well then,” he said. “Do you have a theory?”

  I swallowed hard. “Not yet,” I squeaked. “Before… it took a lot of time to research. I’m at the beginning all over again now. I guess…” I let my gaze fall, defeated. “I’m just trying to figure out where to start.”

  “Do me a favor,” he said, his voice tinged with the veneer of something destined to become an inside joke. “When you figure out what it is, let me know.”

  Perhaps I should have taken his when as a vote of confidence, but all I heard was the tick of a clock. I wasn’t afraid that I wouldn’t figure it out.

  I was afraid I wouldn’t figure it out in time.

  THE GREEK MYTH OF CASSANDRA tells us that she, loved by Apollo, was given by him the power to see into the future. When she rejected him, instead of simply taking away her prophetic gift, he put a most terrible curse on her. Although she could still see what was to come, the curse ensured that no one, not even her own family, would ever believe her when she tried to warn them. Even as her predictions came true—the fall of Troy, the death of Agamemnon—her credibility was eternally doomed. In some versions of the myth, she’s imprisoned, because she is believed to have lost her mind—and being locked up actually does drive her insane. Her attempt to escape the fall of Troy ends with her rape by Ajax, and subsequently she is forced to be a concubine to Agamemnon. She even tries to warn him of his wife’s affair and his encroaching death at the hands of his wife’s lover—which, of course, goes unheeded. Cassandra and Agamemnon are both murdered by Aegisthus, and, in the end, one wonders if Cassandra had been trying to save Agamemnon after all. For if she’d seen his death, she must’ve seen her own. In the end, the cruelest consequence of Apollo’s curse was that Cassandra couldn’t even use her sight to save herself.

  EPILOGUE

  I BECAME A LEGAL ADULT on June 19, 2007. On June 19, 2017—ten years to the day—I was sweating in a hot bath at six o’clock in the morning, trying to figure out how to end this story. The middling summer heat was already beginning to creep into my apartment. I have perhaps started to outgrow the space—but I am parsimonious, and the rent is very reasonable. The location isn’t bad, either: on days when I feel well, I can walk to the waterfront. And my landlord allows me to have Whimsy, my aforementioned mutt, who likes to sit in the doorway to the bathroom. Her birthday—or at least the one I picked for her—was in a few days. The shelter where I adopted her said she was born in mid-June, by their estimate, so I could pick a day if I wanted to. I picked Meryl Streep’s birthday. Whimsy will be four in dog years, which, contrary to popular belief, does not equal twenty-eight human years. Though, it would be nice to think we might be at nearly the same place in our respective lives. A cursory Google search explains that she more likely is aging about fifteen years for every one human year she spends with me. I feel as though I have aged at about that rate too. Perhaps that’s why my health is what it is: not to say that it’s the result of pent-up emotion or unresolved conflict, but rather, an expedited rate of cellular aging in a body that grew up too fast.

  The first fifteen years of my life culminated with full, legal adulthood. Ten years later, most of my peers are only just now living on their own. Whether it be getting their first full-time-with-benefits-and-a-retirement-fund job, or querying me about how to get health insurance—since most of them have, up until this year, been covered by their parents’ plan under the Affordable Care Act.

  As I pruned in the tub, I thought about what I’d hoped, as a teenager, my life would be like when I reached this era of it. What I’d hoped my life could become if I made a life-changing—or rather, life-saving—decision. I felt very timeworn at sixteen, and I conflated (as did a lot of other people, I think) exposure with wisdom, and durability with maturity. It’s only because I realize how young I am right now that I can appreciate how very young I was then, and I have a deep and dear respect for that girl.

  I know—because I am now and was then a devout list-maker—that I had a clear picture of what I hoped I could achieve if I put the legwork in to fix what needed to be fixed and give myself a solid enough foundation upon which to build the rest of my life. As I had written in my notes-to-self, “I clearly lack some emotional stability and am compulsively analytical, but I’m surprisingly competent and I do hope that counts for something in the end.”

  Perusing that list—which at the time had seemed like little more than a catalog of fantastic notions—I realized that while I may not have had them all at the same time, there were more things on the list that I had experienced than that I had not. Many of the things I had assumed I would acquire (like an unspecified number of college degrees) were the things that had not worked out, and those which I had deemed to be near-impossibilities (like falling in love with a man who “would tell me I’m interesting or smart instead of just commenting on my looks,” and “wouldn’t be upset if I talked during sex”) had manifested beautifully, if only fleetingly.

  I studied the list, held it up against the life I have, checking off each wish or aspiration: fulfilling work that I love, living near the sea, having a dog and so many books that I had to start putting the spillover from bookcases in my empty kitchen cabinets. Over the years, I had been able to travel and meet interesting people. My little brother was happy. I had a few close friends with whom I’d trust my life: I was getting to see Hillary’s son grow up and could visit Rebecca at least a few times a year. It was true that some of life’s pleasures had been lost to me, and, a bit sadly, soon after I’d discovered them: food and sex, mainly. The former may have been the more difficult loss to endure, as I found myself fantasizing about a good pulled pork sandwich more often than sex. I’d been able to dance again, if only for a short time. I even managed to knock some of the more obscure items off the list: that very week, I’d finally acquired an accordion.

  As the haves piled up, I began to realize that the one big thing I did not have wasn’t even something I’d ever thought to put on the list:
my health. Certainly as a teenager it hadn’t occurred to me to specifically indicate that I wanted to be in good health—after all, didn’t everyone? The closest was my vague sense of not wanting to “end up like Mum,” but that worry was laden with a lot more than just concerns of physical health. It had never occurred to me that one day my life would have to be filtered through the sieve of my addled health, thus losing some of its potency each time it passed through the ever-smaller mesh of strain.

  Many years ago, Jane scribbled an affirmation on a small piece of paper and handed it to me. I kept it and have it tacked up above my desk: There is an incredible freedom in letting go of the demand that this moment be anything other than what it is.

  When I was nineteen years old, I woke up one morning and was never the same again. That experience was so jarring and anomalous that I knew exactly what kind of moment it was: a crux upon which my life would always teeter, away from before toward after. There were other moments that revealed themselves more perniciously, the way fledgling autumn nights steal daylight hours and squirrel them away for spring, hoarding light out of the ancient fear of being thrust into the darkness unarmed.

  I lift myself from the tub and consider my reflection in the mirror, one that I am strangely relieved to find I do not recognize. It doesn’t quite feel like mine, but nor is it my mother’s. I often wonder what it is that lived inside her all those years, waiting to take her. I wonder what lived inside of her that kept her alive.

  I think of Jane’s proffered quote, standing there in my bruised and fragile body with the devil in its details. In that moment, I feel wide awake, wide alive. I wonder what it is that has, for all these years, lived within me, waiting to take me. I wonder what lives inside me now, what’s keeping me alive.

  It’s still early, the day feels mild, and I have work to do. I straighten my spine and turn away from the mirror; I can ask it my questions later. Truth be told, I don’t yet know what kind of moment this is. The only thing I know for sure is this: I am in it and I am absurdly alive.

  ACKNOWLEDGMENTS

  “PRAISE THE BRIDGES THAT CARRIED you over,” said Fannie Lou Hamer, and I have always hoped to live up to that. As authors usually indicate, it does take a great many people to write a book. I’ve also been incredibly fortunate to have a great many people in my life who made living through and eventually reflecting on the events of this book survivable.

  I would like to thank my agents, Tisse Takagi and Peter Tallack at The Science Factory, who believed not just in this story, but in me, and my ability to tell it. Tisse provided thoughtful, professional guidance as well as personal support—not to mention amazing tea—and was attentive to the project throughout the process. My wonderful editor, Alessandra Bastagli at Nation Books, immediately understood this book, and therefore me. Her commitment to and belief in this story, her generosity as a human being, and her brilliance as an editor shaped this book and brought it to its full potential. I have learned so much from her and am so grateful to have worked with her. Thanks also to the other members of the team at Nation Books who have championed this book, especially Katy O’Donnell and Jaime Leifer; to my project editor at Hachette, Melissa Veronesi; to Kathy Streckfus for her masterful copyediting, which not only made this a better book, but me a better writer, which is nothing short of a gift; and to Elisa Rivlin for her thoughtful, thorough, and patient legal counsel. And thanks to my publicist Brook Parsons as well, whose guidance has, and continues to be, invaluable.

  I would also like to acknowledge the staff of Stanford’s Medicine X for giving me a place to share my story, and Susannah Fox and Michael Nielson, who believed it could go further still and set me on the path to get there.

  A number of marvelous academics, archivists, and librarians also deserve my thanks, including Heather Pierce-Lopez at Harvard University, those at the Historic Hospital Admission Records Project at Kingston University, and the staff at the Mid-Manhattan Library.

  I am grateful to Dr. Tamer Seckin and Padma Lakshmi, Dr. Harry Reich and Liz Reich, and the Endometriosis Foundation of America for giving me yet another space in which to share my story and connect with so many devoted, brilliant minds: Dr. Jay Rosenberg and Lorraine Rosenberg, Dr. Melanie Marin, Noémie Elhadad, and Sylvia English.

  Thanks also to the many people at Sarah Lawrence College, from the admissions staff to the friends and professors who changed my life, for permitting me to be part of your community, even for a short while. A degree or thesis could never really capture what I experienced in my time there, and I am forever thankful that I had the chance to thrive. I did so in large part because I had the chance to work with incredible women like Sara Rudner; I hope she knows that I finally learned to let go. I will always deeply admire Elizabeth Johnston for her sharp mind and many achievements and for her kindness and encouragement—not just of my intellect, but of the layers beneath that motivated it.

  To some of the many fascinating, loving people in my life:

  To Hillary and Jax, to whom this book is dedicated: Hillary, I would not be alive if not for you and that’s a fact. If nothing good were ever to happen to me again, my life would still be good and so blessed because you’re in it. You are the only person who has been there through every single thing in this book: every couch, every address, every hope and horror, the old pain and the new pain, the old dreams and the new dreams. Perhaps, most of all, thank you for the laughter. There were years where I only laughed with you, and it was not merely life-saving, but life-giving. And Jax, being your aunt is a twofold joy, because from the moment of your arrival I have been able to watch you grow up, and because I’ve watched your mom become a mother, and that has been such a precious gift to me. I know you’re only just learning to read, and while I do hope you’ll read this book one day, for now, feel free to stick to Where the Wild Things Are.

  To Beck: you are a truly remarkable woman, and every year that goes by I find myself feeling luckier and luckier to know you, to call you my friend, my family, really. I’m also incredibly proud of you, and so many times throughout this journey I’ve wished that I was more like you. I hope you know how much you, and the strength of your convictions, have always inspired me.

  To the dear people who have, over the years, loved me in some way, or let me love them: Dagney and Bill; Meg and John; Trish, Kriste, and Alayna; DSK and AK; MPB, BMB, and IPB; DRW, AG, MAM, DCW, Stephanie Cabral, Brett Willard, Sergeant Clapp, Kerry C., Jacob and Julia; Abbie Kopf; and Annika and Rhianna (I’m having a bit more fun now, Rhi—I promise).

  I can’t even begin to express my gratitude to the woman herein called Jane: “With or without our knowledge, we are all alchemists” (Eric Micha’el Leventhal).

  To Liz for taking a chance on me and giving me so many opportunities: I am forever grateful and indebted to you for that, and so thankful to have had your mentorship.

  To Stefanie McAllister, for so candidly and fearlessly sharing her story with me: you’ll always be the Peter to my Wendy-lady.

  To Seth, Jessica, Emma, and AJ: you were kinder to me than I deserved in the very early days of this book’s life, and I’ve not forgotten that.

  To the people who may not realize what a vital impact they have had on my life through its many splendid details—the finest of which is coffee, for which I thank Sondra and her Zootlings, Joyce, Richard, and Kathleen Meil, and all the other “townies.”

  In addition, I would like to thank the following:

  The women who have kept the Ask Me About My Uterus community alive online, specifically Rachel C. Charlton-Dailey, Amie Newman, Kara Rota, and Tracey Fischer, who all volunteered their time, expertise, and experiences.

  The editorial and creative teams at Futurism, Anchor.fm, Romper, Hippocampus Magazine, Paste Magazine, Medium, and other places I was actively working and writing throughout this process, who provided incredible professional and personal support.

  The National Partnership for Women and Families, for giving me opportunities for what’s next.
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  David Streitfeld at the New York Times, for mentioning this book before it even had a title, and for the encouraging email exchanges.

  Photographer Tim Sullivan of Rockland, Maine, for my author photo.

  I couldn’t stand the thought of being an ungrateful fangirl, so my thanks to Chris Carter for creating The X-Files, and thus, the character of Dana Scully. That being said, I must thank the incomparable Gillian Anderson, without whom Scully would not have become the icon that she is. I used to feel a bit silly about how much a fictional character has meant to me, but I recognize now that in the absence of such a real-life role model during my most formative years, she was an invaluable paragon. I also can’t mention The X-Files without also expressing my thanks to Anne Simon for her hospitality and mentorship, and, of course, for bringing real science to the show, and thus to me.

  Not least of all, I have deep, enduring love and empathy for my parents: you did the best you knew how when presented with a succession of difficult decisions and circumstances that I would think anyone, anywhere, would have struggled to overcome, even in the best of times and with a lot more support.