Don't Call Me Princess

by Peggy Orenstein

  I also read about a study of people with perfect pitch. That trait, too, may be partially genetic and, as it happens, may be disproportionately found in Ashkenazi Jews. My brother has it, as does his son. I do not. Great, I thought. They got the perfect pitch gene, while it looks like I got the cancer gene—and I might add, the zaftig upper arms.

  Why is there no exact feminine equivalent of the word “emasculated”? That’s how I felt about the idea of prophylactically removing both of my breasts. Maybe they aren’t the only source of my femininity, my sexuality, but I’m rather attached to them (as they are to me). We have a lot of history together, me and the girls: standing up to those junior high boys who called me a pirate’s dream (because of my “buried treasure”); chanting the legendary bust-increasing mantra from Are You There God? It’s Me, Margaret. (It didn’t work.) Giving pleasure. Getting pleasure.

  I had chosen lumpectomy in part because I felt it would leave me less scarred, psychologically as well as physically, by my illness. Some women feel the opposite—a mastectomy, even when clinically unnecessary, is a reassertion of control over their bodies, their destinies—but I needed to be able to look into the mirror each day and see, more or less, what I always had. I was willing to wager that the kind of breast cancer I had was the kind my body would always make: slow growing and treatable. I had no idea whether that was actually true.

  Ovarian cancer was a different story—it’s hard to detect, and nearly 65 percent of sufferers die within five years of diagnosis. I’d seen my aunt’s abdomen swell to the size of a basketball and watched the mischief and vitality drain from her lovely face. “Numbers aren’t the only way women make these decisions,” said Beth Crawford, manager of UCSF’s cancer risk program. “If you’ve experienced loss, you may make a different choice than someone with little history of cancer in her family. I’ve met women who don’t have retirement accounts, they’re so convinced that they’ll die young. For them, knowing they can reduce risk with a mastectomy or oophorectomy comes as a relief.”

  About a third of the women who test positive in Crawford’s program have risk-reducing double mastectomies, and two-thirds undergo a risk-reducing oophorectomy. Seventeen percent of the latter group have turned out to have early stage, highly treatable cancers, tumors that without the surgery, would probably not have been caught until they were lethal. That was a pretty powerful argument. On the other hand, I wasn’t eager to experience the jarring discomforts or health risks of early, surgical menopause. “Risk tolerance is different for everyone,” Crawford said. “Some women can just monitor themselves closely and sit comfortably with that; others can’t. Everyone has to come to the decision that best allows them to go forward.”

  And what would that decision be for me? I stood at the craps table, feeling truly crappy, wondering what testing would mean to my mind, my body, my heart. I kept shaking those dice for the next six years. Then, at age forty-one, I gave birth to my daughter, and it became clear: I wanted to be here for her first day of kindergarten, to dance at her wedding, and to meet my grandchildren. I needed to be tested. Either way, I’d keep my breasts, but if it came out positive for the mutation, I wanted my ovaries gone. Now. And so one day, in between the breast-feeding and diaper changing, I drove to the hospital, had my blood drawn, and let those dice roll. The strangest thing was, I wasn’t even sure which result I was rooting for.

  It came out negative.

  “We were as surprised as you are,” Crawford told me. “We calculated that you had a 90 percent chance of being positive.

  “We call this an uninformed rather than a true negative,” she added, explaining that if you thought of the BRCA gene as a document, the current test functioned as a spell and grammar check: it could find missing, extra, or transposed letters and words. But if a whole sequence or chapter was gone, the test wouldn’t know anything was missing and would come out clean. So I might still have a mutation, they just couldn’t yet find it. I’d expected a yes or a no—or, more precisely, I’d expected a yes. But a maybe? No one told me that was a possibility. “Do I still have the oophorectomy?” I asked.

  “Well, we can’t really make any recommendations beyond regular surveillance, because you don’t have a known mutation. Maybe in another year or so we’ll have something new to offer you.” She smiled sympathetically. “I’m afraid this is a bit like peeling an onion.”

  I walked out of the hospital into the Northern California fog more lost and frightened than when I’d gone in. Perhaps my body really was a time bomb. Or maybe my cancer and my aunt’s were totally unrelated. A fluke, after all. I’d finally gambled on the test, and what did I learn? Bupkes. Part of me wished I had tested positive. At least then I’d know how to protect myself. Instead, I was left with the unknown—like everyone else.

  The truth is, it’s not possible to ward off all evil, all disease, all ill luck. Maybe, someday, there will be much better detection, better treatment of breast and ovarian cancers, more understanding of the causes, even cures. I’ll be pushing for all of that, for myself and for my daughter, regardless of our risks. Meanwhile, simple as it sounds, I’m left with one last, best choice: living my life as it comes, every day . . . just as I always have.

  What Makes a Woman a Woman?

  When I wrote this piece, in September 2009, the notion that sex was a continuum rather than a binary was, to many liberals as well as conservatives, largely incomprehensible. This was before Laverne Cox graced the cover of Time, before Caitlyn Jenner transitioned, before the hit series Transparent. What and who decides a person’s sex or gender is now at the front lines of the culture wars, with battles raging—as they did historically for people of color, cis women, and gays and lesbians—over the use of public restrooms and the right to serve in the military. If I were to write this piece today, then, less than a decade after it was published, I would approach it quite differently, a shift for which I’m grateful. Caster Semenya, meanwhile, continues to make headlines: In 2017, the International Association of Athletics Federations announced that it will go to court to reinstate a regulation, suspended two years earlier, that sets limits on the natural testosterone levels allowed in female competitors. If the organization prevails, Semenya and athletes like her would either have to withdraw from their sport or undergo hormone replacement therapy. Who’s right? What’s fair? I don’t know, but I’ll be watching to see how the complications of sex, gender, biology, and ethics play out on this high-stakes public stage.

  There is a painting by Richard Prince hanging in the Walker Art Center in Minneapolis, a purple canvas bisected by one line of chartreuse type that reads: “I met my first girl, her name was Sally. Was that a girl, was that a girl. That’s what people kept asking.” That refrain echoed in my head as I pored over the photos of eighteen-year-old Caster Semenya, the South African track star whose biological sex was called into question last month after she annihilated her competition and won the 800-meter race at the World Championships in significantly less time than her own previous finishes.

  Was that a girl, was that a girl. That’s what people kept asking.

  Semenya’s saga was made for the news media. A girl who may not be a girl! That chest! Those arms! That face! She was the perfect vehicle for nearly any agenda: Was this another incidence of people calling into question black female athletes’ femininity (the Williams sisters, the basketball legend Sheryl Swoopes)? Was it sexist to assume that women were incapable of huge leaps in athletic performance? Should all female athletes be gender-verified, as they were in Olympic competition until 1999? (The practice was dropped because no competitive edge was proved for the few women with rare disorders of sex development—it served only to humiliate them.) Should the entire practice of sex-segregating sports be abandoned?

  Was that a girl, was that a girl. That’s what people kept asking.

  I had my own reasons to be fascinated by Semenya’s story: I related to it. Not directly—I mean, no one has ever called my biological sex into question. No
one, that is, except for me. After my breast-cancer diagnosis at age thirty-five, I was told I almost certainly had a genetic mutation that predisposed me to reproductive cancers. The way I could best reduce my risk would be to surgically remove both of my breasts and my ovaries. In other words, to amputate healthy body parts. But not just any parts: the ones associated in the most primal way with reproduction, sexuality, with my sense of myself as female. Even without that additional blow, breast cancer can feel like an assault on your femininity. Reconstructing the psyche becomes as much a part of going through treatment as reconstructing the body.

  In the weeks that followed my diagnosis, during that heightened, crystalline time of fear and anxiety, I was not, I admit, at my most rational. So I began to fret: Without breasts or hormone-producing ovaries, what was it that made me female? Who got to decide? How much did it matter?

  When I was in college, in the early 1980s, the gospel was that the whole enchilada of gender was a social construct: differences between boys and girls were imposed by culture, rather than programmed by chromosomes and chemicals, and it was time to divest ourselves of them. That turned out to be less true than feminists of the era might have wished: physiology, not just sisterhood, is powerful. While femininity may be relative—slipping and sliding depending on the age in which you live, your stage of life, what you’re wearing (quick: do tailored clothes underscore or undercut it?), even the height of the person standing next to you—biology, at least to some degree, is destiny, though it should make no never mind to women’s rights or progress.

  Even as I went on as a journalist to explore ideas about gender, I took the fact of my own for granted: as for most people—men and women alike—it was so clear to me as to be invisible. I was unnerved, then, to discover not only that it could be so easily threatened, but also how intense that threat felt. That, too, gave me pause: Why should being biologically male or female still be so critical to our self-definition? Is it nature—an evolutionary imperative to signal with whom we can reproduce? Is it nurture? Either way, and regardless of our changing roles and opportunities, it is profound.

  Was that a girl, was that a girl. That’s what people kept asking.

  And yet, identity is not simply the sum of our parts. That’s what makes Semenya—whose first name is usually conferred on a boy but happens to be Greek for “beaver”—so intriguing. Science may or may not be able to establish some medical truth about her, something that will be relevant on the playing field. But I doubt that will change who she considers herself to be. According to Sheri Berenbaum, a professor of psychology and pediatrics at Penn State who studies children with disorders of sex development, even people with ambiguous biology tend to identify as male or female, though what motivates that decision remains unclear. “People’s hormones matter,” she said, “but something about their rearing matters, too. What about it, though, no one really knows.”

  There is something mysterious at work, then, that makes us who we are, something internally driven. Maybe it’s about our innate need to categorize the world around us. Maybe it arises from—or gives rise to—languages that don’t allow for neutrality. My guess, however, is that it’s deeper than that, something that transcends objectivity, defies explanation. That’s what I concluded about myself, anyway. Although I have, so far, opted to hang on to my body parts (and still wonder, occasionally, if I would feel differently were, say, a kidney or an arm at issue), I know that my gender could never really be changed by any surgeon’s scalpel. Why not? Perhaps because of the chemistry set I was born with, one that Semenya may or may not share. Perhaps merely because . . . I say so. And maybe that will have to be enough.

  Call of the Wild

  An editor from MORE emailed me one day asking for ideas for a new travel section the magazine was launching. The only criteria were that the trip had to be adventurous (no lolling on the beach) and outside the United States. I submitted a long list of ideas, most of which were in warm weather climes (maybe a little lolling on the beach would be okay . . . ). On a whim, I also threw in, “dogsledding in the Arctic Circle.” I don’t know why. But I knew, as I hit the send button, that was where I’d end up—it was obviously the most interesting story. The article was published in September 2013; the trip is still among the most memorable of my life.

  Nico Hobi, a sharp-eyed, deeply dimpled thirty-four-year-old Swiss man, peered at me. “Will you take an ice bath?” he asked expectantly. I’d just traveled for two days from California to Finland’s slice of the Arctic Circle, lugging my suitcase the last quarter mile through snowdrifts and subzero temperatures. This was to be my last night in civilization—a cozy inn—before a five-day dogsledding expedition through Pallas-Ylläs National Park. After that I’d be sharing a one-room cabin, lacking heat and running water, with seven strangers, including Nico and his perpetually amused wife, Michaela. The weather report predicted record cold. An ice bath—whatever that was—was the last thing on my to-do list. “After the sauna,” Nico persisted in clipped, Swiss-German-accented English, “will you take a bath in a hole in the ice in the lake?”

  Michaela laughed. “He’s joking,” she said. Nico only nodded. “I will dig a hole, and you will see,” he said. “You will take an ice bath.” This was not the first time—and would not be the last—that I wondered what I was doing here.

  Six months earlier, I had weathered a different sort of extreme: lying in an intensive care unit recovering from a mastectomy after a return of breast cancer. I had first been diagnosed and treated at age thirty-five; by fifty, recurrence free, I figured I had it beat. Then one evening my fingers grazed a small, hard knot under my lumpectomy scar. My passport to the land of the healthy was revoked. In most cases, you can’t have radiation to the same body part twice, so though my tumor was low-grade and small and I would almost surely survive it, the whole breast had to go. My doc sculpted a new one out of my abdominal fat, essentially giving me a tummy tuck in the process (now aren’t you jealous?). The downside was a grueling double surgery—eight hours under the knife—followed by a long, slow recovery. A month after leaving the hospital, I couldn’t stand up straight. Two months after, a walk around the block left me gasping for breath. The idea of dogsledding in the Arctic Circle seemed preposterous; it was also, on my darkest days—when my energy ran low and my terror ran high—a hope I could cling to.

  Markku and Mari Rauhala, the owners of Pallas Husky, gathered our group after breakfast: there were Nico and Michaela; a pair of twenty-seven-year-old German PhD candidates in physics (whose habit of explaining the mechanics of virtually everything earned them the nickname “the Einstein brothers”); a photographer in his late thirties based in Los Angeles; and an Australian architect in his fifties. There was also Margarete, another German, who was seventy. At least, I thought selfishly, I won’t be the weakest on the trip. In my woolen long underwear, fleece pants and hoodie, down jacket, two pairs of socks, gloves, scarf, neoprene balaclava, and goggles, I looked like the love child of a ninja warrior and the Pillsbury Doughboy. Yet I could already feel the cold seeping in. At the Rauhalas’ farm, we added bib overalls, anoraks, fur-lined caps with earflaps, clunky polar boots, and leather driving mittens that looked like oven mitts. When I stepped outside again, the day felt almost balmy. I recalled my childhood in Minnesota, with a climate not unlike Finland’s—one, incidentally, I’d eagerly left behind—when my mom bundled me in so many layers that I was red-faced and sweating by the time I left the house. Dressed like that, I could play in the snow for hours. And I did, making forts, snowmen, stockpiles of snowballs, and fields of angels.

  Markku showed us our sleds, simple birch contraptions with boatlike prows and runners about two-thirds the width of my boots. There were two foot-operated brakes: a metal bar with claws that dug into the snow, stopping the dogs immediately, and a flat pan we could step on to slow them down. We’d each have our own team of five. Everything else, Markku said, we could pick up as we went along. “Um . . . how do we steer?” someone aske
d. Finnish is an uninflected language that makes anything Finns say in English sound vaguely ironic. So it was unclear to me whether Markku intended to be quite so deadpan when he answered, “You don’t.”

  I’d expected sled dogs to have a touch of the wolf in them, but my lead pooch, Bambi, looked at me with the melting brown eyes of her namesake and immediately tried to crawl into my lap. Her daughter, Ninni (named after a character in a Finnish children’s book), was equally sweet. All the dogs were, instantly forgiving me for jamming their harnesses on upside down or mercilessly torquing their paws as I tried to hook them to the sled. The howling of some forty dogs eager to run spiraled from din to pandemonium. They didn’t even sound like dogs: they screamed like monkeys, yowled like cats, shrieked like parrots. Their energy built like fizz in a fast-shaken can of soda. I began to worry about what would happen when it was released.