Public Displays of Cancer

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There isn’t much to add to the ongoing cultural conversation about Lisa Bonchek Adams, a woman with stage 4 breast cancer who is using Twitter and the blogosphere as a platform to tell her life’s story, and Emma and Bill Keller, a wife and husband team of opinion columnists who publicly questioned the seriously ill woman’s use of Twitter.

The story as it played out in the media goes something like this: Adams was diagnosed with cancer seven years ago at the age of 37. She’s a mother with three young children whose goal is to live long enough to see her children grow up. Like many individuals with the disease, she’s sought out aggressive treatment for metastatic breast cancer. She’s a prolific blogger and uses Twitter to chronicle her life.

Emma Keller became obsessed (her own word) with Adams’ Twitter feed and wrote an op-ed about Adams’ compulsive (again, Keller’s term) use of Twitter to document her disease and medical treatments in The Guardian on January 8, 2014. Keller quickly became the object of scrutiny because her column seemed an odd attack on a very ill woman. The columnist questioned the cancer documenter for being so public about disease and illness, while not demonstrating any insight into her own voyeurism about disease and illness.

The oddities continued when Keller’s husband, Bill Keller, jumped into the fray with his own op-ed, this time in The New York Times. This Keller’s column was even more disparaging of Adams’ public display of cancer. He calls her use of social media, “a self-medication;” he questions the cost of her care, hinting that her choices are too expensive; he labels her a “proselytizer” for the cancer center providing her treatment.

The day after Bill Keller’s piece was published, Emma Keller’s piece was taken down by The Guardian and replaced with a disclaimer, “This post has been removed pending investigation.”

That’s the story. One woman used social media to tell a public story about living with disease and illness. A pair of reporters took umbrage at her public display of cancer and used their high profile workplaces to question her use of social media. A public outcry led one of the media outlets to rethink its publication of the story, and many pundits and columnists weighed in—almost all supportive of the blogger/tweeter (perhaps the best response is in The Atlantic).

So, what are the lessons to be learned?

Cancer-shaming is a real thing. The Kellers demonstrated they had expectations of Lisa Adams and her experience with cancer, even though they were mere acquaintances. The pair felt comfortable using established media outlets like The New York Times to challenge Adams’ use of social media in chronicling her illness in a way that they deemed compulsive and copious. They described their own family member’s decision regarding cancer as “humane” and “honorable,” while calling hers, “frantic medical trench warfare.” She defied their expectations about how a person diagnosed with cancer should operate in the world, and they felt privileged enough to use respected cultural outlets to counteract her way of being with the disease.

Grief and loss work their way insidiously into all aspects of life. I read more than 15 responses to this story from works in national publications to patient-centered blogs, and nearly every writer cited an example of dying from her or his family. While I disagree profoundly with the Kellers in their challenges to Adams, I do understand their personal experiences with death impacted their responses to her. Adams’ tweets about cancer made them think of their father. Other writers evoked images of deaths they experienced. I would challenge the Kellers (or anyone) to be more mindful of how their own personal experiences with grief and loss weave their way into their work. Working at the Death with Dignity National Center, I have the luxury of examining my own experiences with death on a daily basis. Being more mindful of grief can be freeing.

We are each responsible for our own social media habits, both posting and viewing. When I read the initial opinion piece by Emma Keller, I was struck by her vacillation between describing Adams’ tweeting behavior and the writer’s own viewing patterns. Yet throughout, she draws conclusions about Adams, and none about herself. She says, “It’s clear that tweeting as compulsively as Lisa Adams does is an attempt to exercise some kind of control over her experience,” and, “…she is trying to create her own boundaries, flimsy as they might be.” This could have been a much more interesting exchange had Keller both allowed Adams to describe her own experience with tweeting and drew conclusions about herself as an obsessed follower.

Illness and death are never what we expect. They don’t behave; they don’t play out in the way we want them to. They don’t go according to plan. When we set up expectations for how we or others should behave while ill, we are setting a trap for ourselves.

All in all, this was a perplexing and odd attack on a woman using social media to chronicle an illness slowly spiraling out of a control. Adams could’ve been tweeting about the mundane—footwear or what she had for dinner every night, but rather she was telling her own life’s story. The Kellers used their positions of influence to make comments about our healthcare system, using Adams’ life story as a platform. They got it all wrong. Another columnist got it right, “… the Kellers owe her an apology.”

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