On Wednesday, January 8th, Emma Keller, who writes for The Guardian, published a piece called Forget funeral selfies. What are the ethics of tweeting a terminal illness?. (Note, the piece has been taken down, The Guardian simply stating, This post has been removed pending investigation. Apparently Ms. Keller may have breached confidentiality.)
Both pieces focus on a late stage breast cancer patient named Lisa Bonchek Adams, who communicates via Twitter about her experiences with increasingly aggressive and invasive breast cancer.
A lot of digital ink has already been spilled on this. I linked to one piece a day or two ago, reading both Keller posts at that time. (This was before Ms. Keller’s was taken down by The Guardian.)
I don’t see any particular ill intent in either post. I don’t see deliberately cruelty. I do see some honest attempts at grappling with extremely difficult questions about healthcare costs and decision making and the morality of personal care decisions and the weight of dying.
I also see a profound lack of empathy and self-awareness. I also see a wistful nostalgia for a simpler time when death was a private, even shameful, matter about which no one but the principal and those closest to them had to be embarrassed or made to feel uncomfortable. I see two people who apparently enjoy the wholly transparent privilege of good health being judgmental about those of us in this age of social media on the dark and final journey.
On mourra seul, Blaise Pascal wrote. We die alone. The context for that statement in the posthumous 1669 publication of Pensées was very different than today, but it still rings strong and true for me. Though cancer is, as I have said many times, a social disease that strikes at the hearts and minds of everyone around the patient, in the end, each of us suffers the ultimate extinction as a solitary experience.
But the road to that death… That road is a road each of us can choose to share or not to the limits of our own needs, our own privacy, our audience, our hearts. That two wealthy, healthy people with global soapboxes stand back and pass judgments about the lack of heroism inherent in making a public spectacle of one’s death is both foolish and insulting. And like almost everything else that happens in our cancer journeys, it is inhumane.
There is no special heroism in suffering in silence, as Mr. Keller tries to tell us. There is also no shame in suffering in silence, as Mr. Keller seems to believe people like Lisa Adams and me are saying. Everyone’s journey is their own. Everyone’s degree of openness is their own. In a context like this, concepts of “TMI” and “oversharing” are entirely in the eye of the beholder.
You don’t have to read any of this.
Bill, Emma. If you don’t want to see the spectacle, don’t look. It’s not like Lisa Adams or me or anyone else in our position has, oh, say, to pick an example totally at random, a column in one of the world’s leading daily newspapers. We each tell our own stories for our own reasons. People heed those stories for their own reasons. Our privacy boundaries are where we set them, your reading boundaries are where you set yours.
Surely those of you with powerful voices that project across the world stage have better things to do with your time and resources than assuaging your discomfort at the hard facts of life and death by moralizing about other people’s pain?