“Tone-deaf, ghoulish, & lacking in empathy,” tweeted Boing Boing writer Xeni Jardin. “Reprehensible,” wrote Ayelet Waldman. “A tragically shallow misreading,” tweeted Steve Silberman.
A pair of opinion pieces published in quick succession by Guardian columnist Emma Keller and her husband, former New York Times executive editor Bill Keller, were greeted on the internet as personal attacks on Lisa Bonchek Adams, a Connecticut resident who discusses life with metastatic cancer via Twitter and her blog.
After becoming acquainted with Adams’s work last fall, Emma Keller found herself hooked on her updates. “I felt embarrassed at my voyeurism,” Keller wrote in a January 8 column that has since been removed. (Read a cached copy here.) “Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?”
The questions that Keller raises about her own voyeurism and boundaries in the age of social media are valid ones (I explored some of them in a 2010 Los Angeles Times piece), but her method for examining them could not be more wrong. The problem begins with her lede:
Lisa Bonchek Adams is dying. She has Stage IV breast cancer and now it's metastasized to her bones, joints, hips, spine, liver and lungs. She's in terrible pain. She knows there is no cure, and she wants you to know all about what she is going through. Adams is dying out loud. On her blog and, especially, on Twitter.
It should go without saying, but the only people qualified to declare a prognosis for Adams are her doctors. Journalists should not take it upon themselves to proclaim a diagnosis. Adams, who is in her early 40s and has three young children, has publicly said that she is not dying yet. If there’s a compelling reason for Keller to contradict Adams on this point, she doesn’t articulate it in her column, which does not scrutinize her own voyeurism, but instead questions Adams’s reasons for sharing information that Keller finds morbid.
The piece has a glibness to it, as if Keller knows something that Adams does not, and it’s devoid of sensitivity or compassion toward Adams. Keller also quotes a private message from Adams without asking permission, a breech of professional ethics, which was initially noted in a line at the end of the piece until the Guardian removed it entirely, “pending investigation.”
A few days later, Keller’s husband Bill piled on with a piece in the New York Times titled “Heroic Measures,” in which he points to Adams and her social media feeds as an example of “the frantic medical trench warfare that often makes an expensive misery of death in America.” Keller is right that we need to have serious discussions about how we treat cancer in this country. The time is right for more nuanced discussions about end-of-life issues. But he chose the wrong patient to exemplify the problem.
Bill Keller never gave Lisa Bonchek Adams a chance. He didn’t listen to her story. He didn’t even bother to check the most basic facts of her life. A correction at the bottom of his column says that he misstated the number of children that Adams has, even though this number is listed prominently in her bio. His timeline for Adams’s cancer is also incorrect, but these are minor errors compared to Keller’s fundamental mistake–he hinges his entire piece on a complete mischaracterization of Adams’s story and her attitude toward the cancer that has invaded her life.
“The first thing I would say is that her decision to treat her terminal disease as a military campaign has worked for her,” he writes. Yet if Keller had taken the time to read Adams’s blog, he would know that she explicitly rejects the warfare narrative that he pins on her. If he’d listened, he would have known that the treatments that Adams is receiving at MSK right now are not “heroic measures,” but palliative care, something he advocates in his piece.
It’s Bill Keller’s complete failure to see the woman he saw fit to criticize that has ignited rage and charges of sexism. ("Whiny woman making a big fuss about cancer. Shush! Go pet your therapy dog!" tweeted Susan Orlean.) His grand (though by no means novel) ideas about death and dying blinded him to the human being he sought to exploit for his argument’s sake. He violated the journalists’ ethical obligation to treat the ill people they write about with respect and sensitivity. As a result, he didn’t open the discussion about dying that he’d intended, but instead provided the internet with one more example of female invisibility in the face of a powerful man with a big idea.
Here’s what Keller missed. In a world predominated by pink ribbons and false hopes, Adams has been a voice of truth and realism. Despite Keller’s assertions to the contrary, Adams has never implied failure in those who accept death in cancer’s final stages, as Keller’s 79-year-old father-in-law did. Indeed, Adams has explicitly pointed out that it’s not personal virtue, but tumor biology, that determines whether someone outlives their cancer. “You can do everything right, and cellular biology is more powerful than that,” Adams said in an extended discussion of breast cancer awareness that aired on Al Jazeera last October.
Which leads us to another serious problem with both Keller pieces — they paint an inaccurate picture of the science. A few minutes of googling “metastatic breast cancer” would have pulled up this note of caution, from the Metastatic Breast Cancer Network. “Metastatic breast cancer is not an automatic death sentence. Although most people will ultimately die of their disease, some will live long and productive lives.” As this 2011 Times piece explains,
Stage 4 breast cancer can be treated, but it is considered incurable. Depending on the type of tumor, patients may live for many years — working, raising children, starting nonprofit foundations, doing yoga and even running half-marathons.
It’s possible that Adams is entering the end stages of her disease, as the Kellers imply. But it’s also possible that her latest hospitalization will prove just one more difficult episode in Adams’s life with a cancer that’s become an incurable, chronic disease. Right now, it looks like the latter to Adams and her medical team, and this is not necessarily the false hope that Keller implies.
The reality that Keller doesn’t acknowledge is that in between happy ending stories like his wife’s “40 day breast cancer” (a noninvasive condition, from which she has declared herself cured) and his father-in-law’s peaceful slipping from life at age 79 exists a difficult reality that about 155,000 Americans are living in right now. Many of them, like my friend Karen Hornbostel, may live for many productive years with a metastatic cancer that’s treated as a chronic disease.
It’s this kind of coexistence with cancer that Adams has been sharing with the world, and as Zeynep Tufekcim writes in Medium, Adams has done a great job debunking common misunderstandings about breast cancer. It’s too bad that Bill Keller wasn’t listening. Everyone has an opinion, but if you’re going to share yours with the rest of the world in a New York Times op-ed, it’s a good idea to make sure it’s an informed one.
-Christie Aschwanden
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