Health

Why I Don’t Wear Pink

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I like being pretty. I even like lip gloss. I wanted to live. I understood fully the crucial role the pink ribbon campaign plays in raising money to fund the research that would save my life. I am grateful for its success. But still the pink tote bag and its contents made me furious.

In college, I read Audre Lorde’s famous book about her experience with breast cancer, The Cancer Journals, in which she describes the way her identity as a lesbian woman of color was ignored and insulted as she was urged again and again to submit to reconstructive surgery. She was angry too.

In pink ribbon world, I felt precluded. The ubiquity of the narrative and the speed with which it was transmitted to me didn’t leave me any room to think for myself. It didn’t invite me to figure out what breast cancer meant to me. It didn’t encourage me to find my own words or metaphors or symbols. Pink ribbon world handed those to me already made. Stepping inside it would leave no room to do the things I love most: think, debate, discover.

My doctors were medically astute and well-meaning. They must have assumed that if I wasn’t immediately ushered into pink ribbon world, I would be worldless — adrift and afraid. I imagine that many women are relieved to enter a world where breast cancer has a well-defined narrative structure, but I knew I couldn’t build a home there.

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I did not hear the rumblings of war, I heard the song of life.

I resented the emphasis on external beauty over internal feelings. For instance, no one ever talked about whether reconstructed breasts could experience sensations. And when I asked the nurse who was teaching “chemo class” if it was safe to have sex during my treatment, she blushed and stammered and finally said she didn’t know.

I resented, as well, the insistence on bravery and the martial language of battle and war.

And most of all, I resented the loss of an inchoate liminal space — a space to think and to find my own meanings — which had always served as the condition for my creativity and my vitality.

Instead of stepping into this pink ribbon world, I decided to look for my own narrative. I don’t think it’s objectively better than the one offered to me, but it is mine. I tell it to encourage other women to think for themselves about their own cancer and its meaning.

The first thing I noticed on my own was that cancer was not my enemy. Although I understood that left alone, the cancer cells inside my breast would grow and divide and eventually kill me, I didn’t feel separate enough from those cells to make war on them. Cancer is not a virus. It doesn’t come from without. It is only a variation of what is within. The cancer cells were my cells — just as much mine as the healthy cells they replaced. What made them cancer was that they wouldn’t stop reproducing. They would subdivide endlessly and recruit blood and nutrients to support their out of control expansion. Their only crime was that eventually they would kill the very host they needed.

As I listened to the cancer cells inside me, I did not hear the rumblings of war, I heard the song of life. “We are of you,” they sang, “We are joyful and explosive with the life force. We don’t want to die.” I couldn’t respond authentically with the language of invasion and battle. It felt as self-destructive as leaving the cancer alone. I needed a language of healing that didn’t treat the cancer as an external enemy, but as a constituent and even valued part of myself.

I came to embrace the language of vitality. I made peace with cancer by recognizing its origin within me. I let myself feel the painful weight of sacrificing one part of me in order to preserve myself more completely. I allowed myself the chance to mourn the loss of these cells — and the unbridled enthusiasm they represented to me — even as I undertook the treatments that would destroy them. I whispered words of love and appreciation to these cells and to the living energy within me.

I kept this to myself. The few times I tried to talk about it, I was met with incredulity or dismissal. Some friends worried I was giving up. Pink ribbon world’s emphasis on war and courage meant that I couldn’t find much social support for my more loving perspective.

I learned that most patients characterize their cancers using the model that had been presented to me. Psychologist Ulrich Teucher, in his essay “The Therapeutic Psychopoetics of Cancer Metaphors,” reports that among the patients he studied, cancer was routinely described as external: an invasion, a dark cloud, or an obstacle. If it is envisioned as arising from inside rather than outside, it is as a parasite or even a “demonic pregnancy,” as Susan Sontag described.

In my reading, I found a few exceptions. The critic Anatole Broyard, in his memoir of prostate cancer, Intoxicated by My Illness, explains:

The threat of illness itself seems to sound a romantic note — I’ve been feeling exalted since I heard the diagnosis. A critical illness is like a great permission, an authorization or absolving.

It is not a matter of facing the illness with courage, “it’s a question of desire,” he writes. And philosopher Gillian Rose, who died in her forties of ovarian cancer in 1995, also found herself responding with a liveliness that disturbed those around her. As she wrote in her piercing memoir, Love’s Work, that “what people now seem to find most daunting with me, I discover, is not my illness or possible death, but my accentuated being; not my morbidity, but my renewed vitality.” Broyard and Rose became touchstones for me — models of what could be found through reflection rather than absorption.

Recently, I came across an old Harper’s Magazine essay by Barbara Ehrenreich, in which she struggles to look at her cancer cells through the lens of cancer world:

The “enemy,” I am supposed to think — an image to save up for future exercises in “visualization” of their violent deaths at the hands of the body’s killer cells, the lymphocytes and macrophages.

She surprises herself by instead seeing “the energy of these cellular conga lines.” She realizes, as I did, that these cancer cells represent her own self: “These are, after all, the fanatics of Barbaraness.”

Because my cancer had been detected early and because breast cancer research is well-funded (thanks in large part to the pink ribbon campaign), and because I had good insurance, the first parts of my treatment went well. I had outpatient surgery and a week of targeted radiation therapy. There were minor complications with both. I was drained during those three months, but I could pretty much carry on. If treatment had ended there, cancer would have been a pretty minor deal. A detour that could be navigated quickly and privately. But even though my tumor was small and the cancer had not spread, genomic testing revealed that it was aggressive. To prevent its return, I would need to have four rounds of chemotherapy.

Pink ribbon world encouraged me to imagine myself as a chemotherapy warrior. But I was in no mood to make war.

When we think of cancer and how awful it is, we are often thinking not so much of the disease but of its treatment. The smiling bald children in the St. Jude ads are not bald because they have cancer. Cancer doesn’t make you lose your hair. Chemotherapy does that. Cancer didn’t make me nauseous or weak or disoriented or bruised. But chemotherapy did.

For several days after the first round, I had trouble articulating the effects of chemotherapy. The side effect list I had to sign off on had led me to expect a discrete set of unpleasant symptoms. But the post-chemotherapy feeling was more holistic than that, enveloping me in a vague sense of something being not quite right. I could abstract individual problems from this mood of dis-ease — an aching head, sudden sharp pains in my bones, pressure in my abdomen, changes in my balance and my sense of taste, ringing in my ears, sensitivity to touch, an intensity to my visual field, a horizon of queasiness — but doing so felt somewhat artificial. Individuating sensations in this way belied the immersive nature of my experience.

At first I could only say that I felt odd. Then I tried on some alternative descriptions: malaise, ill-being, distorted. I wasn’t sick. I hadn’t become an invalid. But assuredly, I was no longer well.

Pink ribbon world encouraged me to imagine myself as a chemotherapy warrior. But I was in no mood to make war.

In her 1996 book The Alchemy of Illness, Kat Duff describes her years of chronic fatigue syndrome as a visit to the underworld. This resonated and recalled for me the narrator of Psalm 30, who begs to be rescued from “Sheol,” the metaphoric grave or pit into which he had been thrown. Chemotherapy showed me that the land of the dead isn’t a faraway place. It was where I now lived. From its borders I could look out at the ordinary world, aware that I was no longer at home there. And from within I looked for comfort and companionship. I remembered Persephone, who was condemned to return to the underworld each year. And Jacob, who forever limped after a night of wrestling with an angel. Surviving a visit to the land of the dead is possible, but it carries its price.

Amidst the uncanny awfulness, there were some surprising pleasures. My extreme sensitivity to touch meant that holding my daughter’s hand was exquisitely comforting. The rushing sound in my ears sometimes sounded like a fountain or a fast moving stream. And sometimes it became the beating of angel wings.

Over four cycles of chemotherapy I aimed to keep hold of my sanity and my sense of self. There was no war to be made against my cancer, only the hope that when it was over I could arise with my limp and return to the land of the living.

The chemotherapy center had reclining chairs to sit in and warm blankets for my lap. The focus was on comfort and support. The hardest part of receiving chemotherapy wasn’t the needle or the time it took for the infusions, or even the wooziness the medications caused. The hardest part was step one: willing myself to hold out my arm and accept this terrible potion. Each time my arm reached toward the nurse and her needle, my hand shook. Even though I understood that this was part of the cure, my body wanted to resist. On some physiological level something in me saw through the half-truth that this was good for me. I was in a topsy-turvy world where what was good and what was bad were somehow confused: The cancer cells that would kill me symbolized life, and the drugs that would cure me symbolized death.

I took some comfort in knowing that the thin line between what will cure and what will kill is widely recognized. In Hebrew, the same root underlies rophe’im (healers) and repha’im (weakeners). In Greek, pharmakon means both “medicine” and “poison.” Taxol, one of the two chemotherapy drugs I was given, comes from the yew plant. When I visited the national botanical garden in Washington, D.C., I found it in the healing garden and also the garden of poisonous plants.

The ambiguity of the words matched my experience. As I watched the IV drip, I was never sure if I was getting better or worse. I had to find faith to disbelieve the evidence of my senses. Everything I could feel told me that these medicines were making me sick. Only my doctors, whom I trusted immensely, could make me believe that they were really making me well.

Two weeks after the first treatment, I began to lose my hair. It came out in small clumps for a bit and then the rest slowly fell off strand by strand. I expected that it would be like ordinary hair loss, so I was surprised how much it hurt. The pain continued until I had no more hair left to lose.

Out to dinner with my family one night, our waitress told me she loved my hat. It caught me by surprise until I realized that she didn’t know I was wearing it because I was losing my hair. She was making friendly conversation about an accessory choice. From the distance across the table I looked like a regular customer. She couldn’t tell that I resided in the land of the dead. I was both relieved and horrified. “I am in the land of the dead,” I wanted to tell her, “where nothing is the same. A hat is not a hat here.”

From the moment I knew that I would need chemotherapy, the sacrificial symbol of hair seemed to be all around me. Everywhere I went I saw strong women with bare or covered heads: Jewish women in their snoods and sheitels, veiled Muslim women, shaved Bhuddist nuns. When my hair began falling out, a bald student told me she had her head shaved as part of a fundraiser for childhood cancers. Each of these women looked strong to me. They seemed to have found something larger and more meaningful than hair.

My own hair loss signified the exact opposite to me — a lack of control. Weakness, not strength. The images that filled my mind were stigmatized ones. Bald women were prisoners, or punished Nazi collaborators, or aliens from another planet. Sometimes they were insane — shaving her head was the tipping point for Britney Spears that transformed her from sexy and provocative to seemingly downright crazy.

Arthur Kleinman, a psychiatrist who pioneered the study of patient medical narratives, writes compellingly about how certain illnesses create a sense of “spoiled identity” and hence intense shame. In his 1988 book, The Illness Narratives, he writes that symptoms that create problems for self-presentation, that interfere with appearing normal or competent, that disfigure, are stigmatizing because “they break conventions about what is acceptable appearance and behavior while invoking other cultural categories — of what is ugly, feared, alien, or inhuman.”

My patchy scalp looked alien and ugly to me. The strands of hair on my comb and my pillow frightened me. I was helpless to prevent it and I didn’t know how to represent it to myself or others. Hiding my hair under a wig or a hat didn’t fix the essence of the problem. As Kleinman says, “the patient may resist the stigmatizing identity or he may accept it, either way his world has been radically altered.”

Shame is not mentioned in pink ribbon world, although the relentless emphasis on physical beauty is likely an attempt to keep shame at bay.

But overtly naming my experience as shame mitigated its power more fully than makeup tips or a wig. Even so, shame remained a companion during my treatment and for months afterwards. I could remind myself that as far as disfiguring ailments went, baldness was relatively minor. I could remind myself that my hair would grow back. But reason and cognition could only take me so far. As Roxane Gay wrote about processing her own shame in her 2017 book, Hunger, “it was not as easy to believe these truths as it was to know them.”

In times of illness, Jews read from the book of Psalms, and as a Jewish woman I took up this practice. Between rounds of chemotherapy I read them in English and in the simpler, more poignant, and more authentic Hebrew. I often found myself crying as I read these very old worlds. The metaphors of the psalms spoke directly to my need. I was indeed walking through the valley of the shadow of death (Psalm 23). And yes, my weeping arrived in the evening followed by joy in the morning (Psalm 30). I did want protection from the pestilence that walks in the darkness and the destruction that comes at noonday (Psalm 91). And it was all I could do some days to lift my eyes up to the mountain in search of help (Psalm 121).

From the psalms I also came to understand the nature of healing. As Samuel Chiel and Henry Dreher explain in For Thou Art with Me: The Healing Power of Psalms, to be healed is to be brought back into psychic and spiritual wholeness. It may or may not come with a physical cure. I was too secular to pray for a cure — I don’t believe in a G-d that picks and chooses who will live and who will die. But I am just religious enough to have prayed for healing and to be comforted by the words and rituals of my tradition.

Along with the psalms, I read cancer memoirs. My husband warned me against this, fearing that sadness would overtake me. And I did cry each time I read about the diagnosis, the botched surgery, the stage four news, the children, the fear, the last summer, the pain, the cure, the hope, the bravado, and on and on. But I kept reading. The memoirs showed me the multiple ways that women held on to a sense of aliveness as they faced death. Even the ones that were published posthumously — the ones where cancer meant death — held life within their pages. And they felt like a lifeline to me.

In the midst of my third cycle of chemotherapy, just as I realized that I would be permanently diminished by it — that my ovaries were unlikely to rebound even after I was “done” with chemo, for example — I read a passage in Roxane Gay’s book, Hunger, that stopped my breath:

It took me a long time but I prefer “victim” to “survivor” now. I don’t want to diminish the gravity of what happened. I don’t want to pretend I’m on some triumphant, uplifting journey. I don’t want to pretend everything is okay. I’m living with what happened, moving forward without forgetting, moving forward without pretending I am unscarred.

In pink ribbon world, “victim” implies passivity and is avoided. But Gay reminded me that I could be a victim and still retain my agency. Cancer victimized me in the sense that I did not invite it in. It befell me. I will most likely survive it but not because I am a survivor. I will survive because of science and medicine and luck.

The ubiquity of pink ribbon world means that I am repeatedly called “brave” and “courageous.” I don’t accept these labels because I was not a volunteer. If there was a way to get out of having cancer, I would have taken it. My “fight” was in the service of absolutely nothing other than my life. Living through the hardships of my treatment righted no moral wrong.

And yet, I found a broader ethics — an ethics of vitality — of the kind Gay describes. It wasn’t courage I evinced, it was the subtler virtues of aliveness and authenticity.

It is a tradition at many oncology centers for a patient to ring a bell when she completes her last infusion. When it was finally my turn, I rang it long and loud and surprised myself by sobbing. I cried from relief at being done with the terrible treatment, but also from the knowledge that I was at a very low point. Despite my efforts to hold on to my inner vital energy and authenticity, I was alienated and flattened out.

I had become a ghost haunting my bedroom and office. From a distance I passed for human, but up close anyone could put a hand right through me. Without eyebrows or eyelashes, with a bare head, I cast no reflection in the mirror. I thought of myself as a pile of sand made up of tiny pieces but without an organizing principle to shape those pieces into substance.

The way back was slow but it was steady.

Physical regeneration was my initial signpost. At some point, I could climb a flight of stairs without stopping for breath. The bruises on my inner arm faded and disappeared. My hair grew back. I could open the car door without pain. My sense of taste returned.

I had read that acupuncture was helpful for healing after chemotherapy. On my first visit, I felt nothing — not a twinge. But soon the needles sparked vibration, warmth, and release. One day I was driving home from a treatment and felt an internal, energetic buzz. It took me a few minutes to realize what it was: the feeling of being alive.

As I approached the anniversary of my diagnosis, my hair was long enough to count as a style and much of my stamina had returned.

After the city newspaper ran an article about me, the director of the local Komen chapter invited me to lunch. She explained that besides raising money for research and advocating for the importance of early detection, the Komen Race helps local women pay for their mammograms and other diagnostic tests. She asked if I would serve as the honorary chair for the race and lend my name and story to their efforts.

I told her about my ambivalence to the pink ribbon narrative. She assured me that I would be welcomed — that there was room for me to speak candidly.

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