Nearly Me? No, I Am All Of Me, Ghosts No More
Our bodies twitch and lurch and tingle and pinch and tire and inspire and confuse. For example, on a crisp fall day in 2023, I was sitting in a classroom, an observer, when I felt an itch. Without conscious thought my hand moved to my breast, an instinctual move, a response, an urge, only to touch my hand to my body just in time to remember it was a phantom itch, a glitch of my brain and nerves and memory, the breast, almost three years gone but still ever present. This happens in other contexts, too, where I will reach for my breasts only to find them gone, like when taking a bubble bath and my mind sees them, like ghosts, sagging with gravity towards the lavender scented bath water.
If you’d asked me before my surgery, before my breast cancer diagnosis, if my breasts were important to me I’d have said, “no,” without hesitation. My breasts did not play a central role in my life, at least not until faced with the choice of whether to have them removed (which I did) and replaced (which I did not). That’s what I thought, in that way you can take something for granted, forgetting what it means to you, or how it matters, or why you care. My entire life I’d been the kind of woman who rejected the typically feminine aesthetics of patriarchy, the expectations solidified in the mass of plastic we call Barbie. This wasn’t a surprising outcome, as I was a girl raised by a woman who hates Barbie and wouldn’t have let me have one if I’d asked, a woman who doesn’t wear make-up and only wears sensible shoes.
So, I was wrong. Turns out my breasts meant a lot to me, and in some ways they matter even more in their absence. The role that breasts play in the cultural imagination of American womanhood make them a powerful force in the lives of female identified people, whether breasted or not. But, too, body parts haunt us after they are gone, a reminder of loss, of what could have been, missed intimacies, and of course, human frailty and mortality.
About a year after my surgery, I set up Google alerts for “going flat after mastectomy,” seeking insight and connection and what else, I’m not sure. My bilateral mastectomy was a highly impactful experience, and also one that’s been isolating. I had surgery during the pandemic lockdown period so had no outside visitors at the hospital; only my wife, there every day, to bring me loving care, books, and hot tea while I lay in bed recovering. There’s also the loneliness of my body: Audre Lorde pointed out how women with mastectomies are silenced, rendered invisible through the practices of prosthetics and reconstruction, as the realities of our bodies are hidden, disconnecting us from similarly embodied people.
I’ve been “flat” now for just shy of three years and for most of that time it’s been at the forefront of my daily consciousness, of late in a more gentle way. I was 44 at the time of my diagnosis and am 47 now. Since living in this version of my body, I’ve thought about how I “do gender,” and how the size and shape and organs of my body are symbolic tools others’ use to classify my sex and my gender. I’ve interrogated my decisions and their impact on my identity, and I’ve sought a community of like-minded others, connections on the page.
When Audre Lorde wrote The Cancer Journals (a book I first read, eagerly, three and a half months after my surgery) she had no internet to connect her with other flat breast cancer survivors, which shaped her political trajectory and her drive to overturn the power dynamics of silence. Decades later I have been able to rely on the web to link me with others. The Google alerts remind me, every week or so, there’s other people out there who are following a similar path; the alerts accumulate to indicate a group, a community, and the potential for solidarity.
In the midst of the Barbie movie premier, I got a Google alert including an article about Ruth Handler, the inventor of Barbie. Turns out she had a single mastectomy in 1970 and there were no (good) options for prosthetics, let alone reconstruction–the first silicone implant surgery was performed in the 1960s but was not widely available3–so she had to settle with stuffing her bra with wool or tissue. She was likely offered the same “wad of lambswool pressed into a pale pink breast-shaped pad4” as Audre Lorde in 1979. As an astute business woman, Handler–the woman who immortalized the idealized female body in plastic–went on to become a millionaire (again) having created Nearly Me, the first company to produce realistic silicone prosthesis for breast cancer survivors.
My first thought after reading this was: of course the woman who created Barbie–a doll defined by her breasts–was a prominent figure in the business of breast prosthetics. I wondered, too, about Audre Lorde. I thought about the nurse who was pushing the wool prosthetic on Lorde, indicating that not passing as breasted was bad for the morale of the patients and staff at the hospital. Then I thought about technological historical progress and the science of breast augmentation and reconstruction, whether for aesthetics or in response to cancer.
Florence Williams, in her book, Breasts: A Natural and Unnatural History, reports, “in the early twentieth century, [breast] implant materials included glass balls, ivory, wood chips, peanut oil, honey, goat’s milk, and ox cartilage.” Talk about a what-the-fuck sentence. In these instances, Williams is referring to breast augmentation surgeries and the materials utilized in the process; she makes no mention of putting glass balls into the bodies of mastectomy patients, but the point certainly illuminates the lengths doctors and women will go when it comes to their breasts. In the words of two published medical doctors, “fewer surgical procedures have a history as fascinating and as terrifying as breast augmentation.8” In this way, we’ve moved from crazy options (peanut oil?), to some less crazy but still pretty lumpy options (balls of wool), to silicone prosthetics, to surgical reconstruction, to the push in the 1990s to get post-mastectomy reconstruction demarcated as medical rather than cosmetic, all leading to the relative invisibility of the least invasive choice, “going flat.”
Going flat after mastectomy is not, however, a new option. Apparently the 19th Century doctor known for the modern standard for radical mastectomy, including clear guidelines, anesthesia, and antiseptic, argued against any reconstructive options as he believed it would negatively impact doctors’ ability to monitor and control the disease. Thus, he “admonished surgeons not to perform plastic operations at the mastectomy site.” Breast reconstruction did not become the standard of care until the late 20th Century, leaving years–centuries–of flat chested mastectomy patients, presumably stuffing their bras with tissue.
When comedian Tig Notaro removed her shirt on stage in New York City in 2014, showing off her (post-mastectomy) flat chest and scars as part of her comedy routine, she knowingly or unknowingly became a figure in a slow-growing awareness campaign. Two years later, The New York Times published a piece, titled “‘Going Flat’ After Breast Cancer,” featuring photographs of topless women, all flat after their mastectomies. One woman in the piece was reported saying, “having something foreign in my body after a cancer diagnosis is the last thing I wanted,” and here, she was referring to silicone, not Teflon, though the latter was used in the 20th Century. Flat women’s activism has led to Facebook groups, such as Flat and Fabulous, that exist to raise awareness as well as support women who go flat, and companies have emerged on the scene that make clothing for flat bodies.
Prosthetics–at least ones that easily passed for breasts–weren’t a possibility for Ruth Handler, were pushed on Audre Lorde, and were not offered to me. Nor did anyone specifically mention aesthetic flat closure as an option. The first surgeon I met assumed I would do reconstruction. His entire presentation to me, not quite a week after my initial diagnosis, envisioned this outcome. My second opinion, and the doc who became my surgeon, simply said things like, “if you chose to do reconstruction...,” but never really articulated what the alternatives were. Still, somehow I knew what they were. I knew that I could have a mastectomy and not get reconstruction, though I didn’t know what that surgery was called. Was it in the Breast Cancer Treatment Handbook, a book I was given at both of my surgical consultations? We moved seven months after my surgery, and when packing up the house, still freshly traumatized, I threw away that handbook, though now I wish I had it as a reference point, a historical marker, a piece of sociological evidence.
Here’s what I do know: it was clear in my experience, all around, that reconstruction was presumed. For example, when scheduling my surgery, I was told I had to wait for both the plastic surgeon and my surgical oncologist to be free on the same day, so they could start the tissue expander process right away. I panicked all over the woman on the phone from the scheduling department, worried I was going to wind up with reconstructed breasts even though I had told everyone I didn’t want them. Once it was confirmed I wasn’t using a plastic surgeon, only having to navigate one doctor’s calendar, my surgery was promptly scheduled.
Handler’s prosthetic invention ultimately led to the institutionalization of breast reconstruction, of “recovering” the body to femininity after breast cancer. Many people, from academics to survivors, write about how mastectomy is less a medical problem and more an aesthetic problem, or a gender problem, or a sexual problem. We worry that we aren’t enough: sexy enough, feminine enough, woman enough. While on the breast cancer “journey,” heteronormative questions such as, “what does your husband think about your mastectomy?” assume that breasts primarily exist for men’s pleasure.
I thought for sure that I was the kind of person–queer, feminist, anti-establishment–who wouldn’t get reconstructed breasts after mastectomy, but hypotheticals don’t compare to realities. My relationship to the aesthetics of femininity have been fraught my entire life. Middle-aged me would like to claim it was always a political rejection, but young me knows it was really because I just didn’t know what to do, and no one taught me. My mother parented in abstention on this front and as a teen I never fell into the kind of female friendships that would fill in the gaps.
Our tastes, our habits, our preferences, our practices, are learned in a social context. The people we love, or seek out, or crush on, or crave to be around, teach us to like what we might not otherwise come to like (and vise versa). So, I never learned how to use make-up when I was young, and never attempted to remedy this as an adult. I tried using it a few times in my teenage years, but didn’t like the way it felt, so my immediate impulse was to clean it off and with no one to school me otherwise, it stayed off. Same thing with high heels. I don’t wear skirts or dresses, nor do my clothes expose much skin. I was never one to enhance my decolletage, instead more apt to hide. I buy sizes that run baggy, despite being told by others, especially during adolescence, “you’ve got such a lovely figure, you should show it off!”
But still, before I made my final decision, I wondered: can I really live without breasts? As in, every day? I was 44 years old when I was diagnosed with breast cancer, with lots of years left to live (knock on the wood chips the patriarchy used to put in women’s bodies) and though I was in Covid lockdown when I was making these decisions–mastectomy or lumpectomy, reconstruction or prosthetics–I figured most of my future life would be lived in public. I had only ever lived with breasts, and couldn’t imagine an alternative.
Of course, as soon as I wrote that I knew it wasn’t true, since I had in fact lived for 13 years without breasts, so technically, I had only lived for 31 years with them. Technically, I could mine my memories as a map, knowing that for those first thirteen years I contentedly, and with the abandon of a child, carried around a breastless body. Still, as an adult person living in a body with breasts, I could only imagine what it felt like to live in the world, in clothes, in my body, with them.
When I first developed breasts I was devastated. I hated them and their impact on my daily life, and in particular, how I felt in my body. Growing up with two older brothers I was one of those kids–I know I am not alone in this–who assumed that my body would allow me to do everything they did, and I suffered for it. Even before puberty I was confused, not knowing why I couldn’t play without a shirt on even though I was flat chested, or why I couldn’t run with their crowd, taking me outside the approved boundaries set for me. Puberty only served to exacerbate my embodied disorientation and self-consciousness.
I was not driven by sexuality in any way and did not possess the type of body that brought on the male gaze. I have no memories of being looked at, or teased, or groped as a result of my changing body. I had not developed any crushes, nor had it occurred to me to use my body in order to get others attention. Florence Williams wrote, “we probably all remember that exquisite tension between wanting to show off our new breasts and not wanting anyone creepy to notice them.” While reading the book in 2023, I underlined this sentence and wrote, “NOPE,” in the margins, an annotation that highlights my divergent experience. I did not want to show them off, nor do I remember being conscious of others looking, creepy or not.
I remember walking the halls of my Junior High wearing bright neon t-shirts, constantly pulling them away from my chest, hoping to hide, to get lost somehow in the cotton, to become invisible. I would pull my shirts over my knees–knees folded up to my chest–to stretch them out, to turn them into tents I could disappear inside of. Eventually–and this, I think now, took way too long–my Mom took me shopping for bras. The bra's capacity to hide my nipples made me feel less vulnerable, but certainly not more comfortable. It took me years to grow into my body and to learn to appreciate my breasts. It wasn’t a solitary task, but one that happened in relationships. Throughout the years with my wife I came to love my breasts, and then, smack, the plot twist of cancer. Could I let them go?
Prior to my diagnosis, breast cancer wasn’t really in my purview. I didn’t know anyone who had been diagnosed or treated for the disease. I hadn’t yet read Audre Lorde’s book, The Cancer Journals, though I knew of its existence. Tig Notaro was not on my radar. “Going flat” was not in my vocabulary. But still, I knew things about breasts and their alternates; I knew what silicone could do to enhance them, replace them, become them. I knew silicone could shift, leak, explode, rot. And when I met with a plastic surgeon, he did nothing to shift my decision in that direction.
When I told my oncologist that I was not doing reconstruction, she said, “okay,” and proceeded with her work. She gave me no reason to doubt her, so I didn’t. When I thought about going back out into the public sphere–the classroom, meetings, the grocery store–I wanted to have the option of appearing breasted, so I looked into getting prosthetics. I got a list from my surgeon of places where I could get a proper fit, and learned how to get reimbursed by insurance.
But I never did go to any of those places. I came home from the hospital flat and scarred and have remained that way every day since, for almost three years now. I wear fitted clothes. I do not wear scarves for cover, though I sometimes wear them for fashion. In this way, the pandemic served me: I had time to acclimate to the new form of my body on my own terms, without having to be out in public. In short order, I realized that my body was mine to do with as I pleased, and it pleased me to not have to hide how my body had changed.
As Lorde wrote, “the emphasis upon wearing a prosthesis is a way of avoiding having women come to terms with their own pain and loss, and thereby, with their own strength.” In fact, when I thought about wearing prosthetics, it made me sad. More sad, or, a different kind of sad, than having had my breasts surgically removed. When I imagined wearing the prosthetics, I imagined renewed grief over my lost ones, the ones I had known so intimately that when faced with losing them I found a depth of tears I had previously not known. I feared prosthetics would create a roller coaster of grief that would disrupt my ability to move forward, and beyond breast cancer; disrupt my ability to find my strength. I didn’t want my life to be defined by my breasts or my lack thereof. I wanted consistency, and the only way I could get there was through carrying my body, as it now was, with me everywhere I went, and it is a lovely body, indeed, all of me, and ghosts no more.
-Monica Edwards
Monica Edwards has a Ph.D. in Sociology and teaches at a Chicago area Community College. She has published in academic journals and has a forthcoming book, Pedagogies of Quiet: Silence and Social Justice in the Classroom, coming out with Rowman & Littlefield (April 2024). She writes for her students, and this writing has been published on Medium (Equality for All, Greener Together, Momentum, and Modern Identities) and online with the Good Men Project. She walks, plays music, reads, and writes creative non-fiction in her free time.