by Gayle Sulik
Much of my life revolves around cancer, both professionally and personally. My ongoing research of breast cancer culture and industry that started over a decade ago entails an immersion into the topic that involves incessant reading of medical studies, news articles, advocacy materials, public policies, and personal stories as well as systematic observation, interviewing, writing, and networking. It is my everyday work. Cancer also permeates my personal life. Many of my colleagues over the years and some of my closest friends and family members have dealt with cancer diagnoses, treatments, and the lingering effects of the disease and/or the medical interventions that were intended to slow its progression. Cancer has shaped their lives in fundamental ways. Since these people are important to me, their experiences affect me too as I try to be understanding, supportive, and of use. As I continue to research the social and cultural aspects of cancer, the personal and professional form a juncture that informs my perspective.
A while back I wrote an essay about Elizabeth Edwards’ death from stage 4 breast cancer. After an initial breast cancer diagnosis in 2004, Ms. Edwards had a recurrence in 2007 and then died of the disease in 2010. Her death opened up a brief discussion about the metastatic segment of society—those for whom miracles, affirmations, and modern medicine fail with overwhelming regularity. Yet, as I wrote then, “There is a strong societal push to see the cancer glass as half full.” There are always announcements about new therapies, great treatments, and a new era of personalized medicine that lend credence to the belief that incremental advancements in medical science signify imminent triumph in the war on cancer. Uncontextualized survival statistics and hopeful attitudes are alluring to a society that fears cancer and desperately yearns for salvation. This response is understandable even if it is not necessarily realistic or practical. “A glass that is half full is also half empty.”
I am reminded of the multifaceted aspects of cancer almost every day. My loved ones and acquaintances organize their lives around cancer. Medical appointments and tests scatter their calendars. I too await the results. Some endure multiple surgeries, imbibe unpredictable pharmaceutical cocktails, and submit to myriad and sometimes experimental therapies. I witness their effects and listen to their reports. Some have had to alter their activities significantly, change their careers, or retire. Others do not have this luxury and instead continue to work despite fatigue, difficulty, and pain. I observe their experiences, and offer help when I can. All of these people manage side effects, some of which emerged long after their treatments ended. I smile in relief when I hear the news that there is “no evidence of disease.” We agree that for now, that news is “good enough.” If we can’t cure cancer, at least we might hold it at bay for a time. I quell my sense of dread when another person I care about moves into that spiral of medical emergencies and unanticipated cancer developments—that chronic state of affairs when emergency room visits, body scans, pain, and thoughts of death become more regular. And then, cancer takes another life. Another friend. Another colleague. Another person I care about. It’s all too overwhelming at times. And, I don’t even have cancer. Not yet. Not that I know about.
Behind the Ribbon
I don’t want to lose more people. I don’t want to attend another funeral, give another epitaph, have another moment of silence, and shed more tears. But I will, and many of you will. Indeed, every silver lining has a cloud.
Cancer is a human evolutionary condition. It is also an epidemic rooted in a society and culture that fails to recognize it for what it is and what it is not. Cancer is not a ribbon, a screening test, or a leisure activity. It is not a sassy t-shirt, a proclamation of survivorship, or a gift worth giving. It is a life-changing event; a disease process that ignites what is all too often a cycle of medical surveillance and interventions, of which some succeed and others cause irreparable harm. For 65 percent of those who are diagnosed, it will be the eventual cause of death. To ignore this reality for the sake of convenience, feel-good activities, fund-raising, ideological or political grandstanding, or profiteering is to alienate, burden, deny, and forsake those for whom cancer is a major cause of suffering. They deserve better than this, and so do we.
Dr. Gayle Sulik, one of the most sought-after experts in breast cancer and women’s health, has much to offer in showing others not only how to do the kind of important research she has done, but how to reach beyond the ivory tower to share it with those who will benefit most. She will be one of our exciting guests at the final WISH summit starting March 8! Register for free here to access the calls.
Dr. Gayle Sulik Dr. Gayle Sulik, M.A., Ph.D, is a social science researcher and writer affiliated with the University at Albany (SUNY) Department of Women’s Studies. Her ground-breaking analysis of the culture and cult of breast cancer, richly described in her book Pink Ribbon Blues: How Breast Cancer Culture Undermines Women’s Health, has stirred a grass roots feminist reawakening. Sulik’s book is an essential read that provides a thorough grounding for thinking through the many complexities and perversions of a pink ribbon system gone awry. Joining the ranks of feminist provocateurs who have observed how acceptable narratives neutralize and trivialize women’s suffering, she shows how the pink ribbon is itself wrapped up in a system that uses advocacy, culture, mass media, and the medical industry for its own purposes, to create a festive culture of consumption that wrests in profitable complacency.
Gayle Sulik developed the Pink Ribbon Blues website and blog, engaging over 350 thousand readers, and founded the Breast Cancer Consortium in 2012 — an international partnership committed to energizing the scientific and public discourse about breast cancer and promoting collaborative initiatives. Gayle Sulik received the prestigious National Endowment for the Humanities research fellowship in 2008, was named as one of the top ten online influencers in the field of breast cancer from ShareCare in 2012, and is winner of the 2013 Sociologists for Women in Society Distinguished Feminist Lecturer award.