Turning Pain Into Art

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“We have art in order not to die of the truth.” -Nietzsche

I’m one of those people who thinks art is a necessity, not a luxury. When I went through the obligatory Hermann Hesse/Kahil Gibran phase in high school, I couldn’t get enough of that Persian poem about how if two loaves alone to thee are left, sell one and with the dole buy hyacinths to feed thy soul. While that particular passage is a bit flowery for me now, I still love what it represents.

We count on art to make sense of what defies logic and to say what cannot be said. I The one thing that came as close to explaining the horror as of 9/11 as anything could was Deborah Garrison’s poem “I Saw You Walking.” (If you click the link, it’s the third poem down.) I don’t remember any details of the 24/7 news from that time, but that poem is lodged in my brain.

Lately the thought of pain as muse has been rattling around in my head. I can’t stop thinking about a wonderful Paris Review article I read a couple of months ago. (I don’t want to sound more cultured than I actually am; I found it courtesy of the Zite magazine app on my iPad.) It’s called “Frida’s Corsets,” and it’s about how Mexican artist Frida Kahlo created art from the corsets she had to wear to support her ruined spine after a streetcar accident. It’s a stunning story.

I was somewhat familiar with Frida Kahlo’s art and her chronic pain, but had no idea they were so intimately twined until reading this article. In that pre-cloud era, I wonder how many people outside of her circle of friends and fellow artists even knew what she was doing. And I wonder how she’d be using social media if she were here now.

Today we have artists like Regina Holliday, who has turned her own loss into art focused on patient rights and advocacy, including her Walking Gallery of wearable art. We have photographers like David Jay, who created The Scar Project, an amazing photography gallery and book of young women with breast cancer.

We have journals of literature and healing like the incomparable Bellevue Literary Review,which recently celebrated its 10th anniversary. (Doctor/poet Rafael Campo’s essay on “Illness as Muse” in the 10th anniversary issue is a must read. Trust me on that.) We have newly minted ezines like Narrative Nipple, which focuses on breast cancer.

I admire artists of all kinds. But there’s a special place in my heart for the ones who can tap into personal or collective pain and open a window to what’s not easily understood or explained. I would argue that we need them every bit as much as we need patient advocates. Turning pain into art is the essence of empowerment.

Our Cancer, Ourselves

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Forty years ago this month, Our Bodies, Ourselves hit bookstores. The 40th anniversary edition recently came out, and last night NBC Nightly News interviewed women ranging from author and screenwriter Nora Ephron to famed breast surgeon, author and Army of Women founder Dr. Susan Love.

If you weren’t around then, it’s hard to understand just how groundbreaking this book was. We were just starting to talk openly about things like reproductive health and birth control, and it provided a road map. It’s been published in 25 languages, and Time magazine named it one of the most influential 100 non-fiction books. An updated 40th anniversary edition was recently published (and it’s available at a 70 percent discount to health clinics and non-profits.)

I was 15 when the original version was published. I never thought it would be around for 40 years, or that I would be purchasing a copy of Our Bodies, Ourselves: Menopause to try to make sense of that next female frontier.

The book providing the first real road map for breast cancer was the still-excellent First, You Cry by Betty Rollin, which came out five years later. Although the fall crop of breast cancer books has become as perennial as pumpkin harvests, I think First, You Cry is still the gold standard. Not only is it an unflinching look at the roller coaster of emotions she experienced, it also provides a look into how much medicine has changed. I spent the night in a short-stay unit after my mastectomy; she was in the hospital for a week after hers.

When I look back on what’s changed, I’m glad women’s health issues and cancer are no longer in the shadows. I’m glad we educate ourselves and share our stories with each other and stand up for ourselves as patients and as women. I’m grateful for social media and the community I’ve become a part of.

But when I look at how our society has changed in 40 years, it seems that while there is no shortage of people who are willing to talk, fewer are willing to really listen. A lot of today’s political discourse seems to have hardened into ideology. I see a bit of that in some health discussions too, mainly around patient empowerment. And I find it interesting that patient empowerment is often equated with feminism. At this stage of my life, I’ve become wary of “isms.”

Would I go back to the way things were then? Absolutely not. I’d just like to see a shift to more listening and respectful disagreement in our public discourse.

The Kindness of Strangers

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“No act of kindness, however small, is ever wasted.” -Aesop

I see my oncologist for my twice-yearly checkup tomorrow, and while my visits have been blissfully mundane over the last three years, this time I actually have a list of questions and a couple of concerns over the lab results from my latest physical. It’s probably nothing, but once you’ve had cancer you can’t help but wonder which “nothing” is actually the edge of trouble’s long shadow. My family doctor sees no cause for alarm, although she promised to keep an eye on things and outlined a course of action that sounds reasonable. I agree, but told her I’m also going to share my lab work with and relay our plan to my oncologist.

I serve on the citizens’ advisory committee of our community cancer clinical trials program, and I’ve come to know its program director, an oncology nurse. We were e-mailing each other today about an event we’re having next month, and she wished me well on my appointment. When I shared my fears with her, she told me they’re normal for anyone who’s been through cancer. She said telling my oncologist is a good move. Then she told me to enjoy my upcoming vacation in Napa, get some sun on my face and relax with a nice glass of wine because I deserve it.

Her e-mail made me flash back to the first e-mail I ever got from her. I was fresh from a horrible consult with an oncologist who recommended a mastectomy after 10 minutes with me. Oh, and I should really consider an MRI, in case I needed a bilateral. Needless to say, I was freaked out.

I was so high on the freak-o-meter that a friend of mine asked Mary Beth, the program director, to get in touch with me. He had kept recommending the oncologist who is now my doctor, and I kept saying no until this awful consult. My oncologist is a principal investigator with the program Mary Beth heads up and she knows him well. She e-mailed me to let me know my soon-to-be oncologist was both smart and nice. She also told me that having cancer in both breasts is extremely rare. This wonderful woman talked me down, and she didn’t even know me. Her kindness radiated through that e-mail.

Mary Beth wasn’t my only encounter with kindness–far from it. I’ve talked before about the kind woman who rescued me in the waiting room the day I had my first-ever surgery. There was the young woman with the insurance company who helped me sort through a billing issue, then paused and said, “How are you?” like she really meant it, and shared her own family history. There was my beyond-awesome surgeon’s equally beyond-awesome receptionist. My journey had many such moments of kindness and I’m sure yours did too.

Today, I see this kindness in social media as well. I see it in the #bcsm tweetchat and the women who worry about each other if they’re offline for too long. It’s nice to know that kindness is alive and well. I believe it’s true that no act of kindness is ever wasted. And you never know how long your kind gesture will stay with someone. It might be for far longer than you think.

Tangled Up In Pink

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I’ve always loved fall, particularly October, even though in recent years it’s become tinged with sadness. My mom died on October 1, 2003, and my dad’s birthday was October 13; this year, he would have been 80. But those bittersweet feelings seem in perfect keeping with fall. The glory of the brilliant gold and red leaves lies in knowing they can’t last. 

But now, thanks to the pink retail holiday that breast cancer has become, at least in the United States, the black cat and orange pumpkin of Halloween, the crisp blue sky and gold leaves of a perfect fall day, have all been crowded out by pink.

The crowding isn’t just visual. When you blog about breast cancer, October is a land mine just waiting to be stepped on. Do you jump on the pink bandwagon and blog about breast cancer awareness and support, as if it’s the one time of year you can talk about it? Or you resist, lamenting the avalanche of pink products and specials and events that have hijacked the month?

I knew this had become an issue when another blogger asked me if I had any big plans for October blog posts. The fact we were even having a discussion about this made me realize just how much Pinktober has gotten under our collective skin. LIke the pink ribbon itself, it’s a loaded symbol.

The truth is, I don’t have that much to say about Pinktober other than I’m already tired of it and don’t like feeling (self-induced) pressure to write about it. Instead, I’m going to give you a recommended reading list of the best things I’ve read so far.

I mentioned that the pink onslaught seems to be most intense in the United States. Read this wonderful post, “Where There Is No Pink Pandemic,” by Philippa Ramsden at Feisty Blue Gecko, to see how differently breast cancer is viewed in the rest of the world.

One of the best posts I’ve read about what a loaded symbol the pink ribbon has become comes from Jody Schoger at the wonderful Women with Cancer. In her most recent post, Upending Pink, she explains why October has made her uneasy for a long time, and includes some great links to recent news coverage of all things pink. But what touched me even more was her previous post, Left Behind, in which she talked about how the politics of the pink ribbon intruded on something as private as a funeral. (I’ve had similar mixed feelings when accosted by a basket of pink ribbons at a funeral, as I’m sure many of us have.)

One of the best and most consistent critics of pink ribbon culture is Gayle Sulik, who wrote the book Pink Ribbon Blues. She will be blogging 30 Days of Breast Cancer Awareness and her first installment, the Inspirational vs. the Actual, looks great.

Rachel May at the Cancer Culture Chronicles sums up what’s wrong with the typical approach to awareness in Breast Cancer Awareness Jersey Shore Style! All outcomes are good, buying a pink pashmina passes for awareness, and there is nothing remotely related to her experience with metastatic cancer. Apparently, her particular “brand” of cancer is a tough sell. It’s a bit problematic figuring out which shade of lipstick works best with thrush.  

Debbie Woodbury at Where We Go Now used to like pink, and wants us to reclaim its power this October.

You’ll find plenty of thought-provoking reads in these and many other excellent blogs. And here’s wishing all of us a fast month. -Jackie Fox

The 10 Commandments of Breast Cancer

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1. Thou shalt give thyself time to think. When you’re diagnosed, you may feel like you have to do something right now. You don’t. Take a deep breath. Give the spinning in your head time to slow down before you make any decisions.

2. Thou shalt not judge thy neighbor’s treatment or reconstruction choices or attitude toward their diagnosis. I honestly have not seen people in the breast cancer community judge each other’s treatment or reconstruction choices, either online or offline. The real armchair quarterbacks are the people who have never been through it.  They need to be mindful of who’s actually on the playing field. Attitude gets a little trickier. No one has the right to tell you how you should feel. Some people would have you think you should be able to overcome your fluffy pink cancer by being all shiny and happy, or that you should be grateful for some life lesson. That’s a BIG fail. But you may be the naturally optimistic type. You may actually be grateful. And we all need to remember that’s okay too. We’re all wired differently. I always say that telling you how you should feel about your diagnosis is kind of like saying you should be six feet tall or have brown eyes.

3. Thou shalt honor thy own feelings, whether shiny and happy or tired or angry or scared. And don’t be surprised to feel all these things within the space of 15 minutes, several times a day.

4. Thou shalt love thyself as thy neighbor. Women are so darn hard on ourselves. Give yourself the same break you would to a loved one going through a big diagnosis.

5. Thou shalt not beat thyself up. You don’t have breast cancer because you ate the wrong things or didn’t breast-feed your kids or exercise enough or the right way. You have breast cancer, because.

6. Thou shalt allow others to help you. This is a tough one for many of us. But your family and friends want to be able to do something for you; let them.

7. Thou shalt not bear false witness against science. You may or may not decide on a certain course of treatment. (See Commandment 2.) You may or may not have a good experience. We can learn so much from each other’s honest recounting of our experiences, but that doesn’t make us medical experts. Celebrities and politicians have a special responsibility here.

8. Thou shalt ask thy doctors questions. Do not be afraid to ask, “What is the risk if I do A or B?” or “What does that word mean?” or “Could you repeat that?” Good doctors welcome your questions and concerns. Not-so-good ones need to be reminded there’s a person attached to the breast.

9. Thou shalt seize the day. There’s no doubt cancer is the elephant in the room. But sometimes you just have to pat its big ugly flank and say, “Excuse me, elephant, but I’m going to the beach, or the movies, or the back yard with my kids. I’ll catch you when I get back. Right now, I’m off to have some fun.”

10. Thou shalt remember you are more than your cancer. Cancer is all about cells run amok in your body. It will do its best to claim your identity as well. You may be a woman with cancer, but you are also a wife, mom, sister, daughter, employed person and friend. Let the extent to which cancer becomes part of your identity be your choice, not its choice.

-Jackie Fox

©Jackie Fox 2011

P.S. Since so many of you have recommended printing and sharing with your family, friends, and doctors, I created a PDF to make it easier to print and share. Thanks to all of you who have shared this and commented. The 10 Commandments of Breast Cancer

Poem: Choice

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Like everyone, I remember where I was on September 11, 2001. We all felt the shock and horror of what happened in New York, Washington D.C. and Pennsylvania, and fear of how widespread it might be. I was in Omaha and vividly remember freaking out when I heard a low-flying jet after all planes had been grounded. I looked up to see Air Force One taking President Bush to Stratcom.

But the images and feelings from Ground Zero had and have the most pull. The first responders going up those stairs when everyone else was going the other way; the ERs waiting for patients who would never come. But what’s haunted me most of all are the people who leaped to their deaths. In the 10th anniversary issue of The New Yorker, Edwidge Danticat said ” . . . I kept thinking about a clear blue sky that had rained lives.” I kept thinking about it too, and about what it must have been like to make that terrible choice.

Choice

All of the choices in your life
Led you to this one;
Taking a job in a tower
That scrapes the heavens;
Showing up for a meeting with clients
That clear blue day.
Now the gruesome games we played
As children are made all too real;
Would you rather go deaf
Or blind? Drown
Or die in a fire?
You have to choose!
And you do.
Sheathed in smoke and tar-black fear
You pause at Hell’s threshold
Then lean out, take a deep breath
And leap into the waiting arms of God.

-Jackie Fox
©2011

Why Is Everyone So Honked Off at Komen?

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“For everyone to whom much is given, of him shall much be required.” — Luke 12:48
 

First, apologies for the exaggeration in that linkbait title. Obviously not every single person in the world is mad at Komen, although I’m sure it must feel like it sometimes to their PR people. This post is more of an open letter to Komen. So here goes.

Dear Susan G. Komen for the Cure,
I’m sure you must be wondering why so many people are coming down on you, when all you want is to help women with breast cancer. I won’t go into the actions that have prompted irate reactions; I’m sure you’re already well aware of them. (For those readers who aren’t, I encourage you to visit Pink Ribbon Blues and The Cancer Culture Chronicles.)

The one argument I would like to make here is on behalf of research. There are a lot of people out there, including me, who would like to see you shift some of your considerable influence and money from education to research.

 My friend Rachel, who blogs at Cancer Culture Chronicles, recently looked at what you do with your money and found that between 2004 and 2009, you spent only 23% of “Net Public Support and Revenue” on actual research, compared to 36 percent on education.

Rachel is an accountant so I trust her numbers. Beyond that, she is fighting for her life against metastatic breast cancer. I trust her to correct any math errors she sees in my posts, that is, if she can fight through the steadily worsening pain and get her arm and eye to work. This is what metastatic breast cancer does. It marches through the body like Sherman marched on Atlanta, torching everything in its path and rendering it useless. Rachel and her doctors are doing everything they can to fight it off, but since no one really knows how mets work or how to stop them, they’re using the medical equivalent of pitchforks and clubs against the nuclear warhead of endlessly replicating cells. They’re buying time.

This is why I beg you to focus more on the research that may help Rachel and other friends of mine, like Pam, stick around. After all, you’re for The Cure; your name says so. And isn’t the only way to find a cure through research?

With more than a third of your money going to education, it’s clear that you think education and awareness are important. But I would argue that the pink awareness ship has sailed, and it’s laden with retail merchandise. If there’s any doubt breast cancer awareness has its own shopping season, no less a bastion of capitalism than the Wall Street Journal says so. If that doesn’t make it official, I don’t know what does.

The widespread success of Pinktober is in large part due to your efforts. No one has done more to raise awareness of breast cancer than you. You’re the gold standard, the 800-pound gorilla of awareness. No one who has followed your story can doubt the power of how one woman’s promise can turn into a grassroots movement and then some. Just think of what could happen if you focused that power on research.

Think of all the good you’ve done already. Think of how much more good you could do. We’re counting on you. Rachel and Pam are counting on you.