The best stories usually come looking for me.
Last spring, an acquaintance called and asked me out for a drink. Amy Patterson (right) is kind of an icon in this town. She’s gorgeous, a successful stylist and motion picture costumer, and for years she owned a marvelous vintage boutique called Venus and Mars.
I knew about Amy’s cancer only through the grapevine of overlapping friendships.
“I’m kind of sick of the whole pink ribbon thing,” she told me, over a number of beers at a nearby watering hole. At first, I wasn’t sure what she meant. But Amy is one of those wickedly funny people whose biting humor sneaks up on you. Maybe it’s because she’s so tiny and blonde and lovely that you don’t expect the commentary to be quite so pointy-edged. But by the third beer, she had me alternately nodding vigorously and snort-laughing and listening intently with silent awe, as she told me about her breast cancer saga.
The bottom line was this: to her, the story of breast cancer as told in the prissier women’s magazines often gets Hallmarkized and shrink-wrapped in sticky pinkness, in a way the irreverent and very real Amy Patterson just can’t abide. Why do breast cancer sufferers always have to spin their story into something “inspirational” and “positive”? she wanted to know. Because the truth according to Amy is: sometimes cancer’s not inspirational. Sometimes, it just sucks.
For Amy—and she’s apparently not alone—the annual shower of pink every October represents that Hallmark-card-ish glossing over of the uglier realities of cancer: the physical pain and draconian treatments, mounting debt and fights with insurance providers; rising cancer rates and the question of environmental causes. And it leaves a glaring, open question: although Pink Month has clearly worked miracles in the arenas of fundraising and awareness, do you really know where most of your money is going when you buy a pink-ribbon sandwich or eyebrow pencil? And as Amy points out, what about all those underfunded diseases that deserve attention too? “We get a whole month?” she quips. “It’s overkill.”
Not in Sync with Pink
Barbara Ehrenreich would seem to agree. Here’s what she has to say on the pink phenomenon in her essay, Welcome to Cancerland:
“Yes, atheists pray in their foxholes— in this case, with a yearning new to me and sharp as lust, for a clean and honorable death by shark bite, lightning strike, sniper fire, car crash. Let me be hacked to death by a madman, is my silent supplication — anything but suffocation by pink sticky sentiment…”
Amy called me that day to share this and other heresies, so often silenced by the ubiquitous cheerleadery-upbeat culture of breast cancer. She wanted to hear the story told in a different way, a way that reflected her own experience of the disease, instead of that shiny, sanitized PR version that makes her roll her eyes. She wasn’t sure exactly what form that story would take; but the idea took powerful hold in my mind. I started looking for other heretics. And I kept coming back to Ehrenreich’s essay:
“The effect of this relentless brightsiding is to transform breast cancer into a rite of passage — not an injustice or a tragedy to rail against, but a normal marker in the life cycle, like menopause or graying hair. Everything in mainstream breast cancer culture serves, no doubt inadvertently, to tame and normalize the disease: the diagnosis may be disastrous, but there are those cunning pink rhinestone angel pins to buy and races to train for.”
To the uninitiated, this sounds like sacrilege. Races-for-the-Cure and pink ribbons are most decidedly in the one-must-not-make-fun-of-this category, right? Right up there with autism and Jesus? But then, I thought, who am I to decide what’s sacred to people who, unlike me, have endured the horror and indignity of cancer? I figure, anybody who’s been through that hell ought to be able to crack some irreverent jokes and pose a few pointed questions, without getting shouted down by sanctimonious haters—many of whom have never actually had this disease.
The heretics, it turns out, are everywhere.
They’re sitting next to you at a restaurant, or at church, or pounding a few shots just down the bar. You won’t know they’re there, but they recognize each other—the chemo-port scar signals their shared experience, like a secret handshake; but you won’t see them wearing a pink sweatshirt or rhinestone ribbon pin. They’re not down with it.
“It feels like a party. It’s a festival,” says Amy. “But we need to move on!” The point being: she had cancer. She doesn’t really feel like celebrating.
She feels like living her life.
“I don’t want to be reminded of it every day.”
That, more than anything, was the common ground shared by the three women I interviewed for the HER Nashville feature that grew out of Amy’s initial idea. Late last summer, I took a deep breath and called two more breast cancer survivors, recommended to me by friends, and nervously asked them if they’d like free rein to tell their stories—good, bad, and ugly—and how they felt about pink.
For local publicist and force of nature Jayne Rogovin (above), and for the utterly forthright, clear-eyed Sara Baldwin, mom of 2 (and possibly the most mentally healthy person I have ever met)—opening up about the frustrations, indignities, and absurdity of cancer was apparently not a problem. I spoke to each of them for more than an hour. I doubt I’ll ever be the same.
Sara and Jayne spoke movingly about what most of us never consider: what it’s like to imagine yourself gone from the earth. Soon. As a strong likelihood. Stop and think about that for a minute. And they also told wildly funny stories: about the silly, thoughtless things people say to cancer sufferers; about what life is like when you’re as hairless as a hypoallergenic chihuahua; even about what it’s like to have sex when you have no hair or boobs.
And they had a few things to say on the topic of All Things Pink.
“I burned some of it,” Sara laughs, referring to the care package full of pink stuff she got from a well-meaning care provider. “I don’t want any part of it,” she explains. Cancer is the last thing she wants to think about, and she doesn’t need any pink shwag to remind her of it.
“If I were to write my memoir,” quips Jayne, “It would be, ‘I Hate Pink.'” A lifelong “tomgirl”—she grew up surfing in Miami and now rides horses several times a week—Jayne’s not about the girly stuff. She wears her “Fuck Cancer” cap all over town and feels no need whatsoever to apologize for it. “I hate frou frous,” she says. “I hate little bows and little dogs, and that’s what the whole pink thing reminds me of.”
Reflections on the “Good Girl” Syndrome
I can already hear the naysayers, gearing up to start speed-typing their anonymous posts of rage. To them I say this: flame me all you want. But I don’t think anybody, especially any cancer-free people, gets to sit in judgement of these three women or the ways they choose to tell their stories. They want to wear a “Fuck Cancer” hat? More power to them. They want to get mad and cuss and shake their fists and burn pink teddy bears? I’m all for it. I won’t judge. Because, when it comes right down to it, what the @#$% do I know about any of it?
After more than 40 years of striving to be the Good Girl, to make sure everybody in the room is happy and doing backbends to keep from offending anybody, I’ve come to wonder why the world wants women, especially Southern women, to be so damn perfect anyway. Why do we have to put on a “brave face” all the time? Why, you ask? I think it’s because, at some level, we’re not expected to live for ourselves. Because if you plug “putting on a brave face” into the universal translator, you get “smiling and making everybody else feel better.” It means not showing the world our anger. It means, as in the punchline of an old joke about finishing school, saying “That’s fabulous” when you really mean “That’s bullshit.”
Maybe there’s another way to be courageous, a way that doesn’t require pretending that everything is OK. Maybe it has to do with overcoming our good-girl conditioning and telling it like it is, even if the world would prefer us to endure certain things quietly and keep them under wraps. Like alcoholism. Rape. Cancer. So unladylike. (I hate that word.)
For Sara Baldwin (above), a “brave face” seems to mean being straight with people, telling them what she does and does not need from them. It means putting her recovery ahead of everybody else’s needs for a time. “I did grow a backbone. A much-needed one,” says Sara when I ask her, are there lessons or positives in all this? “I very quickly discovered that life was too short to be living it to please others…without hurting anyone else, you’ve got to live your life for yourself. This is the only life we have. This is it.”
Sara talks about how she soaks in the lovely, quiet moments more than ever before—golden light in the mornings as she strolls her Franklin farm and watches her chickens poke around in the grass. She talks about how glad she is that she’ll most likely be here awhile for her kids…but also for herself. “I want to live,” she smiles. “I love my life. I don’t want to leave yet.
“Maybe that’s what it is about the pink ribbon thing,” Sara muses. Her reaction to pink had so far been visceral, not fully thought out, but now she’s reflecting on what might be behind it. “It sort of makes light of all this.” All the pain, the terror, the private face-to-face-with-death moments—it can’t be summed up with a cutesy logo. It’s an oversimplification, that little pink loop—a none-too-subtle hint to women to put on a nice wig, smile for the camera, and act like the ugly stuff just isn’t there. Be feminine, it tells us. And being feminine often seems to mean shutting up.
Clearly, pink ribbons mean different things to different people—and whether you love them or hate them, it ought to be OK with the rest of us. There should be room for dissent in the ranks of women, and of breast cancer sufferers, when it comes to how to feel about pink—whether to wear it proudly or set it on fire.
For Jayne, the ribbon just doesn’t fit. “It tries to put a nice pretty package on a terrible disease,” she says. To her, pink’s about syrupy smiles; but what’s so wrong with being mad? When I ask Jayne what pisses her off the most about the disease, she (like Amy and Sara) is glad to tell me. “It usually revolves around not knowing, the unfairness of it,” she says. “And the hardest thing for me is to find a balance of living in the moment, and living in the future.”
I wonder if, maybe, nobody’s asked them these questions before. The way the stories pour out, in a thank-god-somebody-finally-asked-me-that cascade of accelerating thoughts and ideas—I get the impression that maybe, our womenfriends just want to be asked how they really are, and sincerely listened to, without judgement. Even if the answer is, “I’m not good. Not good at all.” That may be a better gift than all the casseroles we can possibly bake.
Related post: From Awareness to Action, from Ribbons to Research (amazing, heart-wrenching blog by an astrophysicist with metastatic breast cancer)
Related post: No F****** Pink Ribbons! Cancer films for a new generation.
There’s more dissent in the ranks – See the movie trailer for Pink Ribbons, Inc:
I never thought of this issue in this type of light. These women are so brave and I can understand how they wouldn’t want things to be “hallmarked” or “glossed” or to even have that constant reminder everywhere they look for an entire month. Thank you for sharing.. Your pictures are beautiful btw. Look forward to reading future posts.
Thank you for your kind note. I wish I could take credit for the amazing photos, but I must pass on the kudos to Gina Binkley. http://www.ginabinkley.com/
What a well-written piece. The idea you or the women you feature could get angry repercussions for voicing their thoughts and feelings honestly is incomprehensible. Pink is support for some, community and a voice, a movement, but it shouldn’t be a label or a badge someone is forced to wear. If you get any crap at all for this it will be undeserved.
Haha, thanks! I don’t mind getting a little crap. But I won’t have any patience for anybody who voices anger at Amy, Jayne, or Sara. I might get medieval on somebody if that happens.
What a powerful summary -“There should be room for dissent in the ranks of women, and of breast cancer sufferers, when it comes to how to feel about pink—whether to wear it proudly or set it on fire.” I am someone who has trained and sweated through those long walks, worn the pink from head-to-toe, and given money to the “cause”. I have done this in the hope that I would have many more years to hold my Mom’s hands after holding them after her surgery. I have done this in the hope that catching the lump in my own breast early sparred me from the horrible and real side of what cancer really is. I have done this in the hope that people (there are some men out there too who get bc) have access to the best technology to detect and stop bc before it morphs into the ugly demon that it is. I have also done this with some guilt. The guilt of knowing that all the rah-rah and money raised has not gone far enough. That it has gone to make some people wealthy in the name of a cure. That, as a society, we don’t take on the hard issues of how to promote living, but recognize the depth and realism of sadness, pain, and ultimately, death. That we don’t stand up to the pollution of our world and bodies from all the products pushed on us to make us prettier, fuller, more fashionable. I have traded supporting the pink machine in the hope that it does a little good and moves society forward in some ways, but we need the matches and the charcoal too.
Cath – thanks for this note! Very well said. Somebody also made this point to me in an email–about the ribbon as an empty gesture, that it demands no sacrifice, is merely an easy, passive way to announce your “support” without really doing much of anything. He’s a marketing guy and seemed particularly offended by the whole thing, but didn’t feel that, as a man, he should say so in public. Interesting point. That said, sometimes it’s hard to know *what* to do, in a general way, besides holding your mom’s hands, delivering lots of chicken soup, and listening. Maybe pink ribbons help some people to feel less powerless against a terrible, random disease. I don’t know. I’m interested in hearing any and all POVs.
Best, Kim
This is an amazing post. Absolutely, and right on. I understand why twenty years ago there was a huge push to prettify the disease and make it acceptable to talk about when we didn’t really say the word “breast” – but that’s over now, and we need to move from awareness to action, from ribbons to research.
Thank you for your work in moving the conversation forward, and for really *listening* to survivors.
Susan
Susan, that’s a great point about stigma, and awareness being such a big issue a few decades ago. I think I read somewhere that breast cancer wasn’t even listed in obituaries in decades past. I’m an outsider in this movement, but your point about how movements have to evolve seems right on. Thanks for your note, and for your excellent post. (I assume you noticed that I linked to your site, in the context of a comment about underfunded research.)
I wish you well, Susan. I cannot begin to fathom what you are going through. I am humbled by it.
Kim
Thank you so much for this beautifully written piece. As a breast cancer survivor, it articulated so many of my conflicted feelings over this month of Pinktober. On one hand, the need to raise money for research and raise awareness for a cure, better treatment, and prevention. One the other hand, the glossy, cutesy, consumer-driven pinkness of it all is incredibly hard to take when you have been through the horrors of this disease.
You are a fabulous writer and have a new subscriber in me. I found you through your Catbird Seat post – headed there next week!
Barbara Keith
Thank you, Barbara, for your kind note. This was one of the more intimidating articles I’ve ever worked on. I wasn’t sure I had any “right” to write anything at all about a disease I’ve not experienced, which is why the magazine article was mostly free of my pesky voice, told instead by firsthand witnesses like you. But I wanted to add a little something to that online—my way of cheering them on, I guess, because they were all 3 slightly nervous about sounding “angry” or “bitter.” I wanted them to know I didn’t view them that way at all, and that I’d have a few words for anyone who judged them.
I wish you well, and thanks again for writing!
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YES!! Absolutely fabulous. I love the thought that women glom on to this pink madness because we “are not expected to live for ourselves.” That says so much. There is a book here!!! OR is it already one? Women need to move PAST THE PINK.
Thank you! Yes, I think there is a book about this. Also, Barbara Ehrenreich’s amazing essay, and a documentary or two.
Kim,
Again such a great story that again hits home for me. My lovely wife who has been with me for 22 years surprised me one morning that she found a lump. It was 6 months after our 2nd child had been born and 1 day after her 37th birthday. That was almost 6 years ago. She went through terrible decisions and indecision, crippling pain, SO MANY surgeries, Chemotherapy, the loss of her hair, her breast, her ovaries, her privacy, and her dignity (she thought.) When she finally returned to work hopeful to spend even just a few minutes not thinking about “Cancer” she was reminded that she was not afforded that luxury. She is a General Surgeon. She had begun to tailor her practice to become a dedicated Breast Surgeon, and Breast Specialist when all this happened. She went back to work only to re live every painful step with each patient and their families every single day. Somehow, she managed to stop crying in desperation for each patient. Somehow, she managed to no longer see herself as a cancer patient, or survivor, or victim. Somehow she managed to place that glow in her eye, and truly smile, and carelessly laugh. Her hair grew back, her scars have faded, her anxiety has quieted, and her presence still give me shivers. She now has EARNED the respect of her patients, and knows all too well their plight. God has seen fit to deliver her FROM this “thing” and TO this “thing” at the same time.
By the way, she hates pink, always has and always will…
Wow. I wish I had spoken to her for this story. She would certainly have had an important and powerful perspective to share, especially as patient and doctor. I hope I get to meet her one day.
Thank you for offering this fresh perspective…
Reblogged this on The War Fish's Lair and commented:
I can already hear the naysayers, gearing up to start speed-typing their anonymous posts of rage. To them I say this: flame me all you want. But I don’t think anybody, especially any cancer-free people, gets to sit in judgement of these three women or the ways they choose to tell their stories. They want to wear a “Fuck Cancer” hat? More power to them. They want to get mad and cuss and shake their fists and burn pink teddy bears? I’m all for it. I won’t judge. Because, when it comes right down to it, what the @#$% do I know about any of it? — Kim Green
Nice.