“If you are silent about your pain, they will kill you and say you enjoyed it.”
Zora Neale Hurston
How should a person die? Is there an answer that comes to mind? Can there be? When I was very little, I used to write (and ambitiously illustrate…13-year-old me always had a very developed figure) my life story, all the way from birth to the moment I died, which was always at age 89 and peacefully in my sleep. I’m not very little anymore, and have seen people die now, and no longer think that there is a right or a wrong way, just that there are myriad ways, all specific to the life at hand, none of them very noble, unless you are the kind of person who finds nobility in pain. I am not. And yet, some people seem to think that it is appropriate to use their platforms as writers to tell other people how to die. Some people think that it is appropriate to condemn a woman for sharing her story, and try to silence her because her narrative is not one to which they subscribe.
Lisa Bonchek Adams is a woman who is living with Stage IV breast cancer, which means that the cancer has metastasized throughout her body. There is no Stage V. Bonchek Adams has chronicled her fight with cancer on her website and also on twitter, where she gained the attention of Emma Keller, a writer for The Guardian. Keller recently wrote a piece (with Bonchek Adams as the subject) which questions the “ethics of tweeting a terminal illness.” Keller’s piece was met with no small amount of outrage because, rather than focus on what Bonchek Adams was doing, Keller instead writes about her own discomfort with the notion of publicly documenting a struggle with cancer. Keller—vampirically—takes someone else’s personal story and makes it about her own problems with the practice of personal disclosure, writing “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?”
And as if it wasn’t enough that Emma Keller pretends that Bonchek Adams’s documentation of her struggle with cancer is some kind of “ethical dilemma” (it’s absolutely NOT a question of ethics at all, and Keller can always, you know, not read, and not become “obsessed” if she has a problem with it), Emma Keller’s husband, Bill Keller, wrote his own editorial for the New York Times (of which he is the former executive editor) yesterday, which seeks to further delegitimize Bonchek Adams’s voice by comparing the way she is dealing with her illness to how his father-in-law dealt with his. Keller questions Bonchek Adams’s choice to enter the drug trials and innovative treatments offered by her doctors at Memorial Sloan-Kettering, and holds up his father-in-law, who “slipped peacefully from life” and chose a “humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.” Ignoring the fact that Bonchek Adams is a woman in her thirties with three young children and perhaps has more than ample reason to want to try any radical treatment available, Keller instead questions whether or not the care with which she’s been provided (including, he mentions almost contemptuously, the hospital’s Caring Canine program, which allows patients to play and cuddle with dogs), and actually goes so far as to try to get her doctors to give him details about her progress and the costs of her treatment.
Keller seems to take personally the difference between Bonchek Adams’s approach to her disease and that of his father-in-law, writing that Bonchek Adams has become “the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures.” He writes this despite Bonchek Adams having said many times that she dislikes the “warrior” approach to cancer. He writes this despite the complete lack of judgment that Bonchek Adams uses in her chronicle of her disease. He writes this despite the generosity that Bonchek Adams has shown in detailing her struggle so that other people don’t feel alone. Keller clearly seems to think that there is one way to die—quietly and out of sight. And he—and his wife—have used their very powerful platforms to attack a woman who is choosing to fight and live out loud, a woman who refuses to go gently into that good night.