By Valerie Deering, a Breast Cancer Action Community Leader
My experience with Susan G. Komen’s Race for the Cure began in 2008, when I walked for the first time with a group of fellow social workers as part of a way to give back and help my community in Kansas City, MO. I paid the fee and got the t-shirt, never questioning where my money went. At that point, I was “helping” and that was what mattered.
I continued to walk each year until 2011, when I was diagnosed with breast cancer and was undergoing chemo and radiation. I remembered noticing during the walks the constant inundation of the importance of screening, the importance of screening, the importance of screening! Did I mention the importance of screening? I had a mammogram just a couple of years before my late-stage diagnosis, so this idea that most of the walks promote—that mammograms provide early detection which saves lives—at least for me, wasn’t true.
Still, I walked the following year, which brought an opportunity that allowed me to travel to St. Louis and partake as a “Survivor” in that race. My friend Rosie paid my registration fee, which I wouldn’t have been able to afford because my healthcare costs had put me in debt.
The number of women who were there and carried the same title that I did that day was overwhelming. But not just that, it created that community, that camaraderie, that sisterhood that we as survivors, as people, live for. I remember the headline on the front page of the St. Louis Dispatch that day read “SURVIVOR SISTERS.”
In my attendance as a “Survivor,” I was “honored” through a special ceremony that certainly flooded my emotions. But we were honored as “warriors” more than anything else, which doesn’t really capture some of the realities of this disease. The reality would have represented all the tears shed, not just that day, but throughout the entire cancer process. The reality would have been in realizing that all the lives lost were actual people— mothers, daughters, aunts. The reality would have been in acknowledging all the pain experienced by brothers, sisters, fathers, mothers. All the fear, all the shame, all the trauma.
I lost my career, my home, some friends, my breasts, my ovaries, lymph nodes, hair, energy, dignity, safety, and hope. When a doctor looks at you, or in my case with eyes closed, and tells you, “Well, the prognosis right now is 6 months to 5 years,” your life changes in ways that can be neither told nor prepared for.
I know that these walks foster what our society longs for so badly: a sense of community and contribution to something that is greater than ourselves. But unfortunately, many of us don’t question where the money is going and which women feel supported—and Komen banks on that.
But now I’m going to start encouraging people to ask questions. I also want to see change. I want the walks to portray breast cancer as the devastating disease it is and stop suggesting that the disease is beatable if you just get a mammogram and “fight” hard. And I want Komen to tell us exactly where the money is going. I want the money to go to research. I want the money to go to community programs that help rehabilitate women during and after treatment. I want the money to help defray a woman’s treatment costs. I want the money to go to helping her support herself or family during treatment, both mentally and physically.
I don’t want this money to go to putting on a show that includes a mecca of pinkwashing. When I attended Komen’s walks, I’m not sure if there was any company that missed out on this opportunity, including ones that make products that contribute to breast cancer. And it was all free to runners. Bags of stuff to take home, to commemorate your experience—to feel good about yourself that you’ve helped a good cause.
It’s important to feel the sense of community that these walks create, but not at the expense of women with the disease. Komen and the like need to change their ways.