The Komen controversy: why “winning” still felt like a heartbreaking loss

Let’s start with a disclaimer: I’m pro-choice (but that’s NOT what this post is about) and a longtime donor/supporter of the Susan G. Komen Foundation for breast cancer research. So when news broke about Komen pulling grants for Planned Parenthood – grants that funded breast cancer screenings for low-income women – I was among those who responded immediately with anger and disappointment. I was prepared to walk away from Komen for good.

The problem was, for the first time ever, I’d signed up for this year’s Michigan 3-Day Walk for Komen in August, and friends had just started to donate on my page when the Planned Parenthood news broke; so I felt compelled to keep my commitment as a final act of fealty. But how on earth was I going to motivate myself, I wondered, to raise the (considerable) money I needed when I felt like the organization just cold-cocked me, as well as many of the women they previously reached out to help?

Of course, as we all know now, Komen eventually reversed its decision, after days of heated debate and pushback, thus reinstating this year’s grants for Planned Parenthood. I marveled then at the power of the internet – how it seemingly sparked change in a short amount of time – and breathed a considerable sigh of relief for the women who relied on PP for health care.

I wouldn’t say, though, that I felt elated or satisfied. Not because I suspect that the fight isn’t over for good – I’m sure it’s not – but because I lost my innocence regarding an organization that had, for many years, had special, highly personal meaning for me.

In 1995, I was a couple of years out of college and working as a bookseller at Barnes and Noble in Ann Arbor. Near the end of my shift one day, I was in the store’s back room, counting my drawer, when my parents called me. My father began by asking me if I could use the tickets (for a stage musical) that I’d recently bought for my mom as a gift, because they weren’t going to be able to use them.

Why not? I asked. “Well, we’re just not going to be able to go,” my dad said.

This and other equally vague, evasive answers caused me to press the issue, of course, until Dad gave up and put Mom on the phone. She told me that she had found a lump, and that a biopsy showed it to be malignant, and that she’d have to start treatment.

Wait. What? We were just talking about tickets for “Cabaret,” not cancer. What just happened?

In a daze, I stared at my manager, seated a few feet away from me in the store’s back office, and stupidly nodded at the phone while my mother assured me that they caught the cancer early, and that she’d be fine. I hung up the phone; I struggled to keep myself together and count the money, which suddenly seemed an impossible task; I punched out; and I wandered wide-eyed through the rows of books for a while, unsure of exactly what I should do with myself next.

I was in my self-absorbed mid-20s at the time, and suddenly, I felt my focus shift from me to my mother. A person I took for granted in my life was in danger, struggling with the same disease that had taken my maternal grandmother long before I was born, and I fumbled and stumbled at how to respond.

My mother’s treatment for this first bout with cancer (there were four, in the end) was limited to radiation; and despite a shoddily executed biopsy that left her with a nasty infection at the outset (and led to her leaving her doctor of many years), her long-term prognosis was pretty good.

But among the personal collateral damage was my new, constant awareness of my mother’s mortality. And with this in mind, about one year later, I registered for my first Race for the Cure.

Yes, it’s just one of many charity 5K races out there. Yet as the event drew closer, the race grew, in my mind, to sublime levels of emotional and symbolic heft. Why?

Because there had been nothing – absolutely nothing – that I could do for my brave-faced, but clearly nervous, mother. I’d tried to spend more time with her before leaving town for grad school in Georgia; and I’d tried to help out a little while at the house. But nothing I could do would affect the cancer either way. So RFTC became profoundly important to me as the sole gesture I could make – to the world, to myself, and to my mother – against this disease that seemed to trample on my mother’s branch of the family tree, and threatened to continue to do so to her, to me and my sisters, and to my little niece who, in those days, wore her ballet shoes to the grocery store.

My feeling about the race was similar to the way people were desperate to give blood after 9/11. (I’m not comparing my mother’s cancer diagnosis with 9/11, but rather the feeling of helplessness that was the aftermath of both.) I was a grad student at Penn State at the time, and I remember waiting in a blocks-long line for six and a half hours before being turned away and asked to come back the next day. And I did come back. Because in the face of this horrible national crisis, we’d all been told that this was something that we could do to help.

It was something that I and everyone else in line had never seen before, and probably something we’ll never do (in such large numbers at once) again. But in that moment of helplessness, sadness, and vulnerability, we all wanted, more than anything, to feel like we were doing something – contributing something. So we waited together, patiently, uncomplainingly, in a line, missing (or canceling, in the case of grad students) classes, eating free food offered by local eateries, and trying to reconcile the recent attack on our country with the potential goodness of people that was so clearly on display in those days.

So Race for the Cure, especially the year following my mom’s diagnosis, was about all I had to hold on to.

And all this build-up to the first Race ultimately made the stomach flu I suffered, starting in the wee hours of that morning, all the more devastating.

Yes, before dawn, I stood feverish and nearly naked in the harsh light of our downtown Detroit apartment’s bathroom and retched like never before, each hour on the hour, until the sun came up. Joe awoke, learned what was happening, and began trying to take care of me.

“I’m hoping it’s out of my system, and that I can still go to the Race,” I told him, trying to sell myself as much as him on this vain hope.

“Are you kidding me? You’re not doing this race,” he said. “And whether you’re there or not, they get the money. That’s what’s important.”

I tried to explain that the Race had come to be about far more than that to me; that I’d wanted to do it for my mother. And then I threw up again.

This was my point of surrender. Almost. “I want you to go do the race,” I told Joe, starting to shiver and cry. “It’s really important to me that one of us is there.”

“That’s crazy,” Joe said, baffled. “I’m not going to leave you alone. You’re sick as a dog. I’m not doing anything but staying here and taking care of you.”

“Please,” I begged through chattering teeth, wrapping myself in a blanket. “There’s really not that much you can do for me. And I can take care of myself. Please, please just do this for me.”

So although Joe didn’t understand my reasons for pushing him out the door to a 5K when I was terribly sick, he nonetheless drove to the Detroit Zoo (where the Race took place at the time) and participated in the race. And I was a little comforted by it.

Since then, I’ve done RFTC nearly every year – including 2009, when we quite suddenly lost my mom, and I posted an “In memory of my grandma, Ruth Ann McKee” sign on then-one-year-old Lily’s jogging stroller. Running in these races didn’t save my mom, but they did make me feel like my family’s story was part of a larger one that, yes, had grief at its core, but maybe hope, too. And each year, the crazy-huge turnouts – thousands and thousands of folks walking and running for a good cause – was always moving, in that it brought together a jaw-droppingly diverse bunch of people. Men and women; old, middle-aged, and young; Asian, Hispanic, black and white; gay and straight; middle class, rich, and poor; you name it – every kind of person came out to participate, because, of course, breast cancer, like all diseases, doesn’t discriminate.

Which brings us to the recent controversy, of course.

For days after the initial news broke, I was obsessed with the story, reading editorials and stories galore online, including those that revealed unflattering tidbits about the Komen Foundation (like this article about Komen suing small charities who dare to use “cure” in their name); and while I generally avoid getting too political on Facebook – just a personal preference of mine – I found myself compulsively addressing the controversy and engaging in painstakingly careful and respectful, but nonetheless emotionally draining, debate with friends, a few of whom are pro-life. (I consider it encouraging that I didn’t lose any Facebook friends throughout this process, thereby proving that despite what we see playing out daily on cable news channels, people who are passionate about their views can still, in fact, disagree and debate like adults without coming to blows or permanently burning bridges.)

While participating in these painful discussions, I felt my shoulders and heart sink with the certain knowledge that from this point on, Komen – no matter what path they took – would become yet another thing in our lives that would be defined as a “red state” or “blue state” thing, thus dividing us even in the “charitable giving to fight disease” realm.

And this is when I found myself reflecting on those weeks following 9/11. For just a moment, we all opened our fists – where we adamantly, defensively clutch at our “big issue” beliefs, the ones that are more and more the foundation of our identity – and stretched out our fingers and came together for something.

Komen, and Race for the Cure specifically, used to be like that for me. It was inspiring and meaningful to see people of all political stripes come together every year to raise money to fight the disease that took my mother before she could see my sister get married, and meet my second child; the disease that robbed us of ever having a maternal grandmother; the disease that caused me to pursue genetic testing.

Yet now I’m struggling mightily to work up the enthusiasm necessary to raise funds for this year’s 3-Day – despite the fact that the outcome of the controversy happened to be aligned with my own personal views.

Yes, Komen will always work to fight breast cancer, regardless of whether or not it provides grants to Planned Parenthood – I understand that. But for those who disagree with Komen’s current and future policy, that won’t really matter. Indeed, in the midst of all the debate, I learned that some pro-life advocates had long boycotted Komen because of the grants; but I’d had absolutely no knowledge of this – as is true, I would wager, for most Komen supporters. Before all this, I didn’t even know Komen provided grants to PP. So our collective ignorance had been a kind of bliss, I suppose, that allowed us to seamlessly join together from all belief systems and backgrounds and walks of life.

But now we’ve tasted fruit from the Tree of Knowledge; and because we can’t un-bite the apple, and unlearn what we know, we’ll never get back to that place of communal good will and innocence.

For this reason, on the day Komen reversed its decision, I wasn’t gloating, and I didn’t pump my fist in the air. Though I’d hoped for the reversal, I nonetheless felt sad.

The number of things that bring us all together, rather than pull us apart, is growing smaller by the day. And if that isn’t a reason to mourn, I’m not sure what is.

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One thought on “The Komen controversy: why “winning” still felt like a heartbreaking loss

  1. Gordon White says:

    Hi, Jenn,
    I was going to comment on FB, but decided to use personal e-mail, then realized the address I had for you was at The Ann Arbor News, if you remember that publication. So I’ll leave a short note here.

    For six+ years we fought my wife’s cancer, always wondering how these “feel-good” charities actually do in terms of making a difference to actually solving cancer, which is the actual Cure involved. We did come to believe that government policy started by Reagan, promising to “get government out of research,” then fulfilling that promise, was probably the most important factor to slowing the understanding of the actual mechanisms of cancer. We first realized that most research is no longer independent, but funded by pharmaceuticals who (naturally?) want to maximize profit, not actually cure cancer. And not necessarily actually understand it, either. And they are some of the most profitable companies in the history of man as the number of cancer patients skyrockets, their drugs used widely at great cost.

    Cheryl died in 2010, and I will always wonder if the government had increased independent research funding in the 1980s instead of nearly abandoning it, would she still be alive? Only in the last few years have I heard of studies which seem to be attacking the problem of discovering cancer’s physical mechanisms and that they are making some inroads. From 2003, when she was diagnosed, I was researching the research, and only starting maybe five years later did I see researchers looking more deeply into the promising approaches they’re working on now. It seemed more as though cancer had become an industry, and Komen–for as much good as they probably do–is part of the parade going along with it, and less “the Cure” than they proclaim.

    There are a dozen more major topics in this, such as: why is cancer so common now? Are we poisoning ourselves to death? Why do the Europeans ban so many of the chemicals we allow in our foods, air and products?

    In any case, thanks for your thoughts. I’d be happy to hear more, or get together and talk. I’m not sure how far our national discussion has progressed when we’re thrown back into questioning whether birth control should be allowed. We live in interesting times.

    — Gordon

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