Breast cancer awareness is a quiet mutation, not a barrage of pink ribbons

http://www.theguardian.com/commentisfree/2014/oct/01/breast-cancer-awareness-mutation-pink-ribbons

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Shortly after I tested positive for the BRCA1 gene mutation that puts women at a dramatically increased risk for breast and ovarian cancers, I landed in my breast oncologist’s office, querulously requesting a last-minute mammogram. I thought I felt something, which sent me straight to the worst-case scenario: there was indeed a lump, that lump was malignant, the cancer was aggressive, and I would soon be dead.

I was 30, single and trying to parse what it meant to have such a mutation inside my body. Some people handle potentially devastating news with equanimity, but for me it was the start of a full digestion of the grim truth, a process marked by nothing if not high anxiety. My visit to the oncologist’s office was among the first of many moments in which that anxiety TKO’d reality, because at some point between lying naked in bed with my arm over my head and the moment when the plastic plate of the mammogram machine pressed down on my breast and the technicians behind the wall pressed a button that would yield an image, a phantom had emerged: there was no lump after all.

Sitting in my hospital gown on the examining table after the false alarm, I was teary, embarrassed and alarmed at my unruly mind. The nurse was kind, quiet and firm. I needed to calm down, she said. There was nothing wrong with me. Then she said something I will never forget:

“This is only a small part of you.”

I knew what the nurse meant: I was more than some giant, walking genetic mutation. I was a daughter, a sister, a niece, a friend, a dog-lover, a horse-lover, a book-lover, a technophobe, a baker, whatever other descriptor I might own.

I didn’t disagree. I also didn’t think it was that simple. The risks were too high. The alternatives, so draconian. The word “cancer” too loaded with ammunition.

I was raised by parents who instilled enough socio-political and historical awareness for me to have grown up thankful to have been born a woman in a country where and era when women are, constitutionally-speaking, guaranteed the same rights as men. At the same time, it was an awareness that allowed some complacency and naiveté because my gender never struck me as a particularly politicizing component of my identity. With the BRCA diagnosis, that changed. If anything can awaken a woman to the myriad implications of her gender, it is being told that the organs that make her female are also those that very literally threaten her life.

I had been living in New York, but moved home to Virginia just in time for the state assembly to play a prominent part in a rash of proposed bills chipping away at reproductive rights across the country: Virginia, Oklahoma and Texas were pushing mandatory trans-vaginal ultrasounds for women considering abortions. Voters in Mississippi were being asked to decide whether personhood begins at fertilization. Federal funding for Planned Parenthood was threatened. There was this absurd discussion on the national political stage over whether or not insurance should cover a women’s birth control.

It was enough to get a girl up in arms. My fundamental beliefs didn’t change so much as they projected themselves with greater volume and urgency. I’d always believed in abortion rights and full coverage for women’s health, but now I carried their torches everywhere. I went to marches and not only signed petitions but forwarded them relentlessly to everyone in my address book. When I listened to radio segments on the latest proposed legislation, I was red-eyed and red-faced. Before my positive BRCA test, I scoffed at Gratuitous Hollywood boob shots; now they enraged me like Sean Penn on a bad night losing his cool. I even stooped to Facebook warfare, taking the bait from one guy who posted a provocative missive in support of limiting birth control coverage and barking at him about how I took the Pill to reduce my risk of ovarian cancer, then unfriending him. When another guy posted a status dismissing the significance of Angelina Jolie’s New York Times op-ed about prophylactic mastectomy, I leapt to her defense. I had had my own prophylactic mastectomy by then and her revelation had come as a welcome affirmation of what it meant to be feminine.

At the same time, my soapbox impulse was wearing off. In its place grew a quieter awareness that expressed itself less pointedly but more pervasively; it didn’t change my responses to some things so much as how I looked at everything. If I had been seeing red upon learning the dark projections for my health, my world was returning to its known colors, now muted with that knowledge that comes eventually for everyone: that the body is not the friend you thought was. The mutation is embedded in my genome, but its effects have become embedded in my mind. The phantom has taken up residence and haunts the house.

October has always been my favorite month. The way you can wake up on a brisk morning and notice how a tree that was green the night before is now dotted with something close to orange – it never fails to thrill. The month’s late afternoon light will always remind me of something to believe in. Post-BRCA, however, this love has been shaded with ambivalence over October’s designation as Breast Cancer Awareness Month. While looking for those auburn leaves, I now brace myself for a barrage of pink ribbons, pink yogurt containers, survivor memoirs commanding the front tables at Barnes and Noble, and ads for cutting-edge breast cancer care during the nightly news. For some, this visibility is empowering, but all it offers me is an unspoken pressure to give money, wear pink, have something specific and meaningful to say and a cause to champion, when I have no money, prefer neutrals and don’t have many thoughts I’m inclined to boil down to sound bytes. And sound bytes have never been good at scaring off the bogeymen who matter anyway. Those guys have always taken more work.