Don't Call Me Princess

by Peggy Orenstein

  My toys looked right surrounding Kewpie, the whole place a little cheerier. I liked them there. I liked the delicate lavender bushes surrounding me in the garden, the wild irises with their ruffled edges, the azaleas, the fleabane, and camellias. They were the same plants as in my garden back home. Crows cawed—the constant soundtrack of Tokyo—and traffic passed in a steady hum. Still, for that city it was a meditative spot. I relaxed, at last. Maybe my en was finally back on track.

  Twilight was falling, and the garden turned cold, but I wasn’t yet ready to go. I prayed for a moment for things that are too tender to tell. Then I clapped my hands three times as I’d seen done at other shrines and backed away, gazing once more at the impassive marble face. Was there compassion there?

  The temple grounds were empty. The monk in his Mercedes, the lady sweeping leaves were both gone. I rummaged in my purse for an envelope and 5,000 yen—about $40. “To the monk I met at five p.m. from the foreign woman looking for Zozo-ji,” I wrote. “Could you please chant a lotus sutra for me and my miscarried fetus? Thank you.”

  I slipped it under the door. I don’t know whether it was appropriate or whether he even did it. But there were so many things I couldn’t know. Maybe learning to live with the question marks—recognizing that “closure” does not always occur—is all I really needed to do. I hadn’t expected, coming from a world that fights to see life’s beginnings in black and white, to be so comforted by a shade of gray. Yet the notion of the water child made sense to me. What I’d experienced had not been a full life, nor was it a full death, but it was a real loss. Maybe my mizuko will come back to me more fully another time, or maybe it will find someone else. Surprisingly, even that thought was a solace.

  I wasn’t exactly at peace as I left the temple—grief is not so simply dispensed with—but I felt a little easier. I had done something to commemorate this event; I’d said goodbye. I’m grateful to have had that opportunity. As I was walking home, the sky deepened from peach to salmon to lavender, and motorists switched on their headlights. The bittersweet smell of fish grilled with soy sauce permeated the air. I breathed it in deeply and felt a little lighter. I decided to try a new route through the unnamed backstreets, not sure of the direction, but trusting that eventually I would find a way home.

  Baby Lust

  As my husband and I descended into the quagmire of infertility treatment, I became increasingly skeptical of the specialists—both conventional and alternative—who claimed they could help us. This piece, which ran in April 2007, reflects my evolving thinking on the ethics, politics, and social meaning of reproductive technology.

  Here is a smattering of things I did during the six-year quest to conceive my daughter: interrupt lovemaking to squirt raw egg whites into myself with a turkey baster (it’s reputed to abet the feminine fluid that speeds sperm to egg); substitute two teaspoons of Robitussin for my morning coffee (its main ingredient thins and loosens mucous in the lungs, and although there is no actual proof, it’s thought to work similar juju farther south); down ovulation-stimulating pills that triggered fits of rage; inject myself with the urine of postmenopausal Italian nuns (the original source of some fertility drugs, though it’s hard to imagine how the goods are gathered); chug unidentifiable herbal potions that tasted like garden mulch; squander what would have been the college fund on long-shot in-vitro-fertilization treatments; imperil my marriage.

  Here is what I did not do: stock up on Häagen-Dazs. That, apparently, was my mistake. According to data gleaned from the Nurses’ Health Study at the Harvard School of Public Health, and published earlier this year in the journal Human Reproduction, women who consume ice cream at least twice a week have a 38 percent lower risk of ovulation-related infertility than those who indulge a mere once a week. What’s more, the piously health-conscious—women who eat two or more servings of low-fat dairy products, particularly yogurt, a week—are twice as likely to have trouble becoming pregnant as those who eat less than one serving of the skinny stuff.

  Health advice is notoriously fickle, but never are we more willing to follow it, no matter how scant or contradictory the evidence (consider the saturated fat lurking in whole-milk dairy), than when that second pink line refuses to appear. In The Empty Cradle, a history of infertility, Margaret Marsh, a dean at Rutgers University, and Wanda Ronner, a physician, reported that eighteenth-century women paid fortunes to lie on the vibrating electrical “celestial bed” that was said to have cured the duchess of Devonshire of her sterility. They soaked in ice water and guzzled patent medicines of “ether, electricity, air or magnetism.” A century later, they douched with silver nitrate and flocked to a physician who claimed success through “transplanting” a pea-size segment of a healthy woman’s ovary into infertile women’s bodies. If that didn’t work, there was always the other miracle cure of the day: cervical amputation.

  John Rock, a Boston physician who in 1944 became the first scientist to successfully fertilize human eggs outside the body, often observed that infertile women make better research subjects than those trying to prevent pregnancy because they are so desperate. It is impossible to overestimate the frantic despair that comes with multiple miscarriages or endless months of dashed hopes. We women will even pay for the privilege of being guinea pigs—or injecting ourselves with them: another fertility drug I was prescribed was derived from the pulverized, genetically engineered ovaries of Chinese hamsters.

  Men, it is worth noting, will not. “Male factor” accounts for up to 40 percent of infertility cases (“female factor” is implicated in about another 40 percent, and the rest is unexplained or a combination), though—perhaps because infertility is often confused with impotence—that fact is less often discussed. In the 1950s, according to Marsh and Ronner, women claimed that they’d rather go childless than request that their husbands get their sperm checked. Forty years later, in a survey of couples using sperm donors, one infertile husband told researchers that he didn’t believe the problem was his. Even today some doctors will mix in the sperm of an infertile husband with that of a donor to perpetuate the possibility, however unlikely, that the resulting offspring is genetically the husband’s.

  Men’s drive to procreate is certainly as strong as women’s—for both sexes, it is, on a biological level, the primary purpose of our existence—but whether because of denial or something else, they tend, as the sociologist Arthur Greil has written, to experience infertility as “disappointing but not devastating.” Women find it “intolerable, identity threatening.”

  That wound to the psyche may cut even deeper today than in generations past, at least the recent past. Women in the post-Pill, newly libbed 1960s and ’70s proclaimed “childlessness by choice” to be the ultimate emancipation, a defiant, even sexy stance. Several decades later, although living “child free” is surely an option, motherhood has been emphatically re-embraced, rebranded not only as an essential feminine right but also as a feminist one—to be claimed whether you are single or married, gay or straight, twenty-five or fifty-nine. Having children when we want them has become a symbol of our autonomy, more central to our concept of self than ever.

  And if our bodies say no? That’s when the infertility industry steps in. For the lucky few for whom technology works (a mere one-third in the case of IVF), it is a blessing. For the rest of us, its existence has created a new drive, as profound as either the biological or psychological: call it the techno-medical imperative, the need to exhaust every “option,” to do “whatever you can” to have a baby—regardless of the cost to self, marriage, or pocketbook—or feel that you have not done enough. It is now possible to remain hostage to perpetual hope for years, unable to explore alternatives, to make peace, to move on. After all, what if the next cycle is the one? How will you know unless you try? And if you don’t, will you be left always wondering what might have been? The uncertainty is agonizing.

  I sometimes wonder whether, if I lived in a culture that fetishized motherhood less—one that didn’t expect c
elebrity moms to coo that motherhood is the “best thing I’ve ever done,” that didn’t use babies to sell everything from toilet paper to automobiles—I would have felt as compelled to go to such extremes to attain it (which I eventually did, no thanks to the fertility docs). It’s impossible to say, though Marsh and Ronner found that even in the 1960s and ’70s, involuntarily childless women submitted to operations, high doses of infertility drugs, and risky experiments with IVF in order to conceive. Apparently even then there was a world of difference between declaring you might not want a baby and being told you couldn’t have one.

  So maybe it’s inevitable that a woman struggling to conceive will live her life in fourteen-day bursts. She will plot her charts and time intercourse with the precision of a five-star general. She will insist on the missionary position and stand on her head postcoitally. She will shoot herself up with whatever the next crazy concoction may be. And she will hope for the best. But now, at least, she can do all that while eating a hot fudge sundae.

  Breast Friends

  Women with breast cancer are expected to join support groups, told that doing so will actually improve their odds of survival. Personally, I’m not much of a joiner but I didn’t want to die because of that. So I decided to go to one meeting. Then I went to another. And another. I doubt that has extended my life, but it certainly touched my heart. And Natalie, who hosted most of our meetings, remains one of my dearest friends. This story, published in October 2003, is about our group’s final reunion, though Natalie and I have talked of having another one some day. It’s also my response to the magical thinking one hears so often in discussions of cancer: that idea (so disrespectful to those who have died) that you can survive it through positive attitude or sheer force of will.

  No one looked too sick. That was my first thought. True, about half the women in the room were bald and frail from chemotherapy, but in some cases the effect was surprisingly fetching, a fashionable first cousin to heroin chic. This was my first foray into the Breast Cancer Support Group for Women Under Forty. I’d come because as a thirty-five-year-old cancer patient, I felt like a freak: getting cancer was like being forcibly repatriated to a country in which nothing I previously cared about, nothing beyond illness and its treatment, mattered. More important, I’d heard vaguely that group support could increase the chance of survival—something about learning to express emotions. Joining up was one of the things the take-charge patient did, along with finding a reputable acupuncturist, enrolling in yoga, and buying organic carrot juice (which I despised but now drank daily). It didn’t occur to me not to do it.

  That first night, I told my story and listened while everyone else told hers. The intimacy, a kind of foxhole sisterhood, was electric, although many of us had little beyond our illness in common. Two were devout Christians who believed in the healing power of prayer. Several others, including me, were skeptical Jews. One was a corporate lawyer. One was in the Navy Reserve. A few were stay-at-home moms. Three of us were childless. Two were single. We were, however, with one exception, white, and all of us were college educated, a reflection both of who is most likely to get breast cancer and who’s most comfortable seeking group support. [This is actually only partly accurate: historically African American women have been less likely to contract the disease than white women, but when they did were younger and had far higher mortality rates. However, the incidence among both black and Asian American women has steadily risen since 2012, while those among white and Latino women have remained stable.] We were also all still relatively close to our initial diagnoses, and, to a woman, our cases seemed hopeful.

  Over the following weeks, we traded notes on the most responsive oncologists and the best times to schedule radiation to avoid long waits. We talked about the strain cancer put on our marriages, our sex lives. And we talked about the possibility of living lives that might be shorter than we’d imagined. One night Sue, who had the most empathic smile I’ve ever seen, told us her surgeon thought her cancer had come back. Her mother and grandmother had died of the disease, and although it turned out to be a false alarm, she was still shaky. “It’s good to be able to come here and talk,” she said. “My friends want to tell me I’ll be fine. They don’t get it. I don’t want to die, but I have to consider the possibility.”

  Another time, I mentioned that I’d never seen a reconstructed breast. So many women pulled up their tops, it looked like cancer day at Mardi Gras. Someone flung her prosthesis across the room. Natalie even let me touch her saline implant, the only time I’ve felt up an adult woman.

  That was six years ago, and my group has been together in some form ever since. Yet, as the years have gone on I’ve often wondered about the supposed benefits of group support. How exactly does it make you live longer? Are support groups like medicine, with a precise amount one should take? And as the courses of our diseases diverged—as the health crisis receded for some and deepened for others—I’ve wondered what “support” over the long haul really means, whom it ought to come from, and at what point this form of “treatment” ought to end.

  For a while, the support group was the only place where I didn’t feel like I had a big red “C” stamped on my head. Even now, when I tell new acquaintances that I had the disease, they look stricken, as if I might wither on the spot, then ask, “Did you have a family history?” I suppose it’s a natural question, though fewer than a third of breast cancers are hereditary (and, for the record, only two in my group appear to be among them), but it’s also a way for people, under the guise of caring, to reassure themselves that they won’t get it. I’m slim, eat right, and exercise, so no comfort there. I hadn’t yet had children when I was diagnosed, but that wasn’t so unusual for a thirty-five-year-old. The truly bold (or paranoid) will ask about my mental health: Had I been depressed before my diagnosis?

  The fact that I answer such questions politely is probably the best indication that I do have a few teeny, tiny issues with expressing anger. Although I’ve chosen a profession that strives to uncover some notion of truth, in my personal life I strenuously avoid confrontation. And yes, I have secretly worried that my emotional dishonesty fueled my tumor—that group therapy geared toward unearthing buried emotions could apparently extend my life only amplified those fears. Wouldn’t that imply the disease was my fault?

  “That’s a concern,” admitted David Spiegel, a psychiatry professor at Stanford. “It’s the bane of my existence that my name is one consonant away from Bernie Siegel’s, who says you ‘needed’ your cancer and all that crap.” Spiegel—with the “p”—was the lead investigator on a landmark 1989 study which found that women with metastatic breast cancer (cancer that has spread to the organs or bones) who attended a weekly “supportive-expressive therapy” group lived an average of eighteen months longer than those in a control group. The study garnered massive media attention and almost single-handedly launched the support group movement that is now ubiquitous for those suffering a whole range of maladies. I didn’t know it at the time, but it was Spiegel’s work—or more accurately, the mythology that has grown out of it—that inspired me to seek out support.

  The catch is, the findings don’t actually apply to women like me, whose cancer was early-stage and confined to the breast. What’s more, depending on whom you ask, Spiegel’s results haven’t been replicated even for metastatic patients. He points to four subsequent studies that had similar outcomes, though they didn’t look specifically at breast cancer. Four that did showed no impact on survival, including the largest and most recent breast cancer study, designed in consultation with Spiegel, and published in 2001 in The New England Journal of Medicine. Which isn’t to say that the groups conferred no benefits. Participants reported less pain than others, and those who were anxious or dejected felt better—itself a worthy outcome. (Among those who weren’t distressed, the groups didn’t help at all.)

  According to study author Pamela Goodwin, those conclusions allow women to opt out of groups without feeling guilty. “
That was the worst fallout of the attention paid to Spiegel’s original results,” she said. “There was someone in our study who, when she saw me just before she died, apologized, saying she must not have done the support group properly.”

  But the idea that emotions are not linked to survival could be a hard sell. The flip side of believing that anger, depression, or other “bad” feelings caused your cancer or contributed to it is believing you have the power to cure it. People want to believe that. In a 2001 Canadian study of two hundred ovarian cancer survivors, almost two-thirds believed that stress had caused the disease. More than 80 percent attributed their survival to a positive attitude, and nearly as many to prayer. A related study of four hundred women who had breast cancer produced similar results—fewer than 5 percent chalked up their survival to the medicine often used to prevent recurrences, tamoxifen.

  “The mind-body connection has been oversold and overbought by a culture that wants to believe that if you will something, it will be true,” said Jimmie Holland, chair of the department of psychiatry and behavioral sciences at the Memorial Sloan Kettering Cancer Center in New York. “But it’s one of those things: If you believe in it, no evidence will change that, and if you don’t, you’ll always be a skeptic.”

  Meanwhile, Spiegel, whose own long-term study on therapy groups is still in the works, isn’t willing to concede the survival question just yet. He speculates that the “dose” of Goodwin’s groups was off—they should have lasted longer. Or perhaps his original outcome was an artifact of another era. A lot has changed since Betty Rollin’s 1976 groundbreaking book, First, You Cry, when cancer was the Voldemort of diseases, its name never spoken out loud. Now you can’t buy a container of yogurt without being reminded of it. “It’s harder to be as isolated now than it was in the seventies,” Spiegel said. “There’s more social support in general. Chemotherapy and hormonal therapies are better, too; people live longer. You can’t improve survival twice.”