Words to Live ByWhy is it so Uncomfortable When Women Challenge Traditional Cancer Narratives?

Illustration by Melody Newcomb

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Amanda was a young government employee living in Ottawa who had been tweeting with the handle @TrappedAtMyDesk since 2009. She regularly talked about the mounting piles of paperwork on her desk and her travels to Europe. Suddenly, in 2011, she tweeted about a breast cancer scare. According to her timeline, she had a second mammogram and an X-ray and then never brought it up again. On January 18, 2013, she discovered she had glioblastoma multiforme—a highly aggressive brain tumor—and that she had only three months to live. Three days later, she quit her job and took off for Cuba and South America. Nearly three months after her diagnosis, she tweeted that she would be going back to the hospital “for the last time…#quietlastnight.” On April 15, her brother James tweeted that she had “passed away from brain cancer late last night.”

Almost a year after Amanda’s death, Shannon McKarney, a Toronto-based blogger and  consultant, made a video of Amanda’s tweets and set it to the song “Let Her Go” by Passenger. McKarney explained that the video was a way to share Amanda’s story and remind people of the digital trails they leave behind. The video, to this date, has almost one million views. It has been described as inspiring because it reminds us that life is too short and we should pay more attention to the little things. Nearly a month after McKarney uploaded the video, Medium’s Jennifer Mendelsohn pointed out that this story smelled like an internet hoax.

Amanda’s timeline—the tests, the follow-ups, the rapid pathology results, the quick staging of the cancer and grading of the tumor—just didn’t add up. (According to her Twitter feed, it took three days for a specialist to diagnose Amanda with glioblastoma.) Also, no one seemed to know Amanda, and the few people she interacted with online had never met her in person. So did Amanda really exist? Did she die? And did it matter?

***

There are two prevailing cancer stories we hear about: the one where someone lives and the one where someone dies. There is, in the cultural narrative of the disease, little room for anything else. We forget there are many kinds of cancers, that each one manifests itself differently in different bodies, that no two cancer stories are ever alike. For every tale of “winning the battle” or “losing the battle” with cancer, there are many more about recurring cancers, low-grade tumors that don’t respond to treatment, or cancer that recurs and metastasizes when it was never supposed to. “There are plenty of real people with real cancer stories,” wrote Boing Boing’s Xeni Jardin in response to the Amanda hoax. “No need to invent fake ones.”

But for some reason, people don’t want the real stories. They want a palatable cancer narrative just like Amanda’s: one that makes them contemplate Big Life Questions without feeling any discomforting side effects. A story that makes you feel better because you are healthy and she is not. Amanda’s narrative is built on a trope of living life to the fullest when life is suddenly cut short. It’s the kind of cancer narrative we are usually exposed to, the kind where we value the emotional impact more than the truth. Readers embraced Amanda’s story because there were no tweets about hospital stays, fluid drains, biopsies, scans, or pain. Real or fake, Amanda’s experience was an easier one to absorb, retweet, and share.

“We tell ourselves stories in order to live,” Joan Didion wrote. “We live entirely…by the imposition of a narrative line upon disparate images, by the ‘ideas’ with which we have learned to freeze the shifting phantasmagoria which is our actual experience.” Cancer has become a storytelling trope, and cancer metaphors clichés. If a cancer narrative diverges from the formula, if the story doesn’t guarantee the reader closure or an important message, it will be ignored or oversimplified to reduce the cognitive dissonance.

Hello, I Have Cancer

Take Lisa Bonchek Adams, who has been writing about her cancer experience and the science behind her treatment for six years. Adams, a mother of three being treated for stage IV breast cancer, was tweeting while in the hospital over Christmas 2013. She tweeted about her pain. She tweeted about missing a family trip. She tweeted about having to tell an X-ray technician, “Give me a sec, I have to inhale slowly.” Journalists Bill and Emma Keller were reading these tweets and decided to write about it. On January 8, 2014, Emma Keller wrote a post for the Guardian describing Adams’s tweeting as “dying out loud,” asking, “What is the appeal of watching someone trying to stay alive?”

A few days later, Bill Keller wrote about Adams in his New York Times column “Heroic Measures.” He admitted to phoning Adams’s doctors to discuss her treatment, care, and prognosis. He said that unlike Adams, his father-in-law just “slip[ped] peacefully from life,” and argued this was a dignified way of dying. It was the way Amanda died, too. Emma Keller also described Adams as “dying” throughout her Guardian article. After the Internet rage settled and her post was taken down, Emma Keller took to her personal blog to clear the air. She explained why she referred to Adams as dying: “I hope for the best, but I refer you here to the American Cancer Society’s statistics on the life expectancy of patients with stage IV breast cancer,” with an accompanying hyperlink.

Much in this sentence rankles beyond reason, but it also illuminates how mainstream media views people living with different kinds of cancer. Keller reduces Adams to a statistic, a probability set in stone. She takes the liberty of diagnosing Adams as “dying” even though she is not a doctor. She treats Adams as a measure of her own good health because Adams is deemed the worst-case scenario. Emma Keller herself was diagnosed with stage 0 breast cancer and wrote about her experience for the Guardian (“Double Mastectomy: My Brutal 40-day Breast Cancer Cure”).

Embedded rich media on Twitter

Embedded rich media on Twitter

By Keller’s account, her goal was to put the experience behind her “as fast as possible before carrying on with life as normal.” Keller’s story has a definitive ending: She caught something early, allowed for the proper medical intervention, and has now moved on. This is the other kind of accepted cancer narrative: The one where the patient survives and presumably has a long life ahead. There is little room left for a story like Adams’s. She carves out a space for the story of her experiences, on Twitter and her blog, even though many people find her situation depressing. If Adams tweets about her illness and people don’t like it, they can unfollow. Adams still has to read tweets about other people’s normal lives, lives that will follow a predictably linear progression into the future. “I wish people would appreciate the luxury of getting older,” Adams recently tweeted.

Today there are more people than ever writing about their cancer experiences, and there is discomfort in those rising numbers. Journalist Brendan O’Neill wants us all to stop oversharing and has written three different articles denouncing “cancer commentary.” In May 2013, when Angelina Jolie revealed in the New York Times that she had a preventive double mastectomy, O’Neill wrote an article for the Huffington Post advising Jolie that she should have kept her decision private. A commenter even suggested that Jolie should have donated money to charity “instead of spending that money selfishly on breast implants.” The first thing critics, journalists, or commenters criticize about these narratives is how they’re so #TMI. Why make us watch? they ask.

But in a way, being treated for an illness forces your life to be public. There is the constant stream of doctors, nurses, and health practitioners who look at your charts, ask you questions, examine you. You’re isolated and alone but surrounded by strangers. Though the entire conversation or nature of the interactions is couched in medical terminology, you are still being supervised. What O’Neill doesn’t understand is that for everything someone tweets or blogs or shares about their cancer experience, there is much more they are not telling. And Jolie didn’t have to share her story, but we should all be glad she did: Navigating healthcare systems while making difficult decisions about the rest of your life is daunting and can seem impossible for even healthy people to understand.

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Jolie highlighted that many people do not have access to gene testing, costly preventive surgery, and reconstruction; she started a conversation about who gets to be proactive about their health. And despite all her efforts, Jolie is still at risk. This makes cancer-awareness culture uneasy. In her New York Times article “Our Feel-Good War on Breast Cancer,” Peggy Orenstein, twice diagnosed with breast cancer, explains that after “American women embraced mammography, researchers’ understanding of breast cancer—including the role of early detection—was shifting.” The disease, explains Orenstein, “does not behave in a uniform way. It’s not even one disease. There are at least four genetically distinct breast cancers. They may have different causes and definitely respond differently to treatment.”

The purpose of the pink ribbon, she explains, is to “remind women that every single one of us is vulnerable to breast cancer, and our best protection is annual screening.” Awareness campaigns contribute to the perception that metastatic cancers are hopeless cases because they focus on prevention and screening rather than treatment. Boosting a general sense of awareness is also a way of ignoring the fact that doctors and researchers still don’t understand cancer. It’s why Emma Keller still says that Lisa Bonchek Adams is “dying.” Compare and contrast the reception of any woman’s cancer narrative to that of Lance Armstrong’s. Or, if you were diagnosed with cancer, count the number of times someone compared your cancer experience to Lance Armstrong’s. As S. Lochlann Jain explains in Malignant: How Cancer Becomes Us (2013), Armstrong “claims survivorship as a key identity, reiterating continually that his greatest success and pride lie in his having survived testicular cancer.”

In Armstrong, Jain further explains, “age, class, gender, and a curable cancer—along with his brilliantly choreographed cheating, masochistic training schedule, and dazzling marketing skill—combined to form an icon of cancer survivorship.” Armstrong’s memoir recounts a journey, a quest where the set goal is beating cancer. The way his story is presented and received is that he took control of a volatile situation. The public misinterpreted his well-marketed book as providing insight into the human condition. They got a yellow bracelet out of it, too. There is solace in knowing how a story will end from the beginning. Lance Armstrong beat the odds and then wrote a book about it. Jolie, on the other hand, took preemptive measures but still has a 5 percent chance of developing breast cancer and a 50 percent chance of developing ovarian cancer. Armstrong is an inspiration. Jolie is photographed “rocking a low-cut camisole in Hawaii” after her mastectomy.

Ansel Elgort and Shailene Woodley in The Fault in Our Stars (Photo credit: Twentieth Century Fox Film Corporation)

Alicia Merchant is a Toronto-based writer, editor, and fact-checker who is living with recurrent ovarian cancer. In her essay “In the Face of It,” for Little Brother Magazine, she tries to figure out “how to be funny when I live under the sword of Damocles.” Merchant writes about the first time she listened to comedian Tig Notaro’s now-famous “Largo” set, performed just after the comedian found out she had breast cancer. For 30 minutes, an audience had the feeling of Notaro processing the diagnosis in real time. “I wish I could have been introduced to Notaro’s set as a healthy person looking in,” writes Merchant, “because I don’t understand why it’s funny to the people in the audience.” Merchant articulates what a “tidy cancer narrative” is and how it is so different from her own experience.

She also points out how the tidy narratives rarely discuss anger and fear. “I don’t have the experiences most people take for granted,” she explains. “I never feel invincible. I never imagine growing old without feeling embarrassed for even thinking of it as a possibility. I’ve never been comforted by the words, ‘Don’t worry about it, you’re young.’” That “don’t worry, be happy” advice Merchant is talking about is classic bright-siding. “Looking on the bright side of things is a euphemism used for obscuring certain realities of life, the open consideration of which might prove threatening or dangerous to the status quo,” Audre Lorde wrote in The Cancer Journals.

This is what awareness campaigns and survivorship are built on. We all look forward to a bright future the same way we look forward to a happy ending in a sad story. In interviews, Notaro says everything is going great. “Hers is the kind of story that makes some people call cancer a gift,” writes Merchant. “I want her to say how hard it is.” Every story has to have some sort of ending. “The people who can buy books and magazines and go to the movies don’t like to hear about people who are poor or sick, so start your story up here,” Kurt Vonnegut once explained during a lecture. Vonnegut was graphing the “good-fortune axis” of a story. Someone who gets in trouble has to get out of it again, he said. Hamlet is a masterpiece, he explains, because “Shakespeare told us the truth, and people so rarely tell us the truth in this rise and fall. The truth is, we know so little about life, we don’t really know what the good news is and what the bad news is.”

This is what popular or “tidy” cancer narratives lack. We know so little about cancer, which is why we feel comfortable hearing about survivorship, or beating the odds. We prefer these stories to the ones like Merchant’s, or Adams’s, or Jolie’s that speak to the fear of living in uncertainty. In John Green’s The Fault in Our Stars, Hazel Grace Lancaster is 16, living with thyroid cancer and mets (metastases) in her lungs. Her treatment, she explains, has been “in pursuit of extending my life, not curing my cancer.” The Fault in Our Stars, lauded as the no-bullshit cancer book, has been adapted into a movie, which will be released in theaters this June. According to Green, his book was inspired by Esther Grace Earl, a teenage girl and blogger who had thyroid cancer.

The day before the trailer was leaked, it was announced that Esther Grace Earl’s book of letters would be published posthumously. Included in the collection of letters was one she wrote using futureme.org, a website that allows you to write letters to your future self. Earl had sent a letter from herself to her parents. In her own words, she ends the letter explaining just why she sent it to them:

To be honest, I’m not even sure if future me will even be alive. And for that reason I’m sending this email to mom and dad, since if I’m NOT alive, at least I know this email will be checked. Man, what a way to end this letter…okay, future me, just try to be happy. Try to do things. Don’t forget that many times you thought you’d never make it through the night. Remember all the people that have helped you in the past. Tell your family how much you love them. Go to school—it may seem stupid, but doing homework and research can get your mind off the little, bothersome things. Read. You’re forgetting to read as much, and reading is a lovely thing. Try to solve a Rubiks cube again, you solved your first one yesterday :)

When you’re young and living with cancer, even if it’s in remission, it’s hard to imagine the future because you’re preoccupied with the present. You unlearn how to set life goals or how to plan ahead. Only your doctors get to assess your odds of a future. Jain explains how cancer “exists in nonsensical time, and living in prognosis challenges individuals and institutions alike to conform to its hourglass.” Earl’s letter makes me think about how people tell you to “live in the moment” when you’re sick, and how this aphorism reinforces the idea that you therefore have nothing more than the present to look forward to. Every time Earl writes about her future self, it feels like a protest against “living in the moment.” Earl dares to have expectations and to tell her own story—whether it fits the accepted narrative or not.

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by Sara Black McCulloch
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Sara Black McCulloch is a writer and research assistant living in Toronto