How do you approach death in the age of social media?
Avoid writing about it, is the advice of former New York Times editor Bill Keller and his wife Emma. Earlier this month, the couple published columns in the NYT and on the Guardian website, questioning the motives of Lisa Bonchek Adams, an American woman tweeting about her stage IV breast cancer.
Emma Keller — whose column has since been removed by the Guardian —wondered whether Adams’s writing was narcissistic, “a grim equivalent of deathbed selfies”, and disapprovingly accused her of “dying out loud”.
Bill, meanwhile, compared Adams, a 40-something with three children, unfavourably to his 79-year-old father-in-law, who went more quietly into that good night. He was worried, he said, that Adams glorified a medical system that “makes an expensive misery of death in America.”
In the inevitable internet storm that followed, the couple were blasted for insensitivity to a sick woman and for arrogance in trying to tell her how to die. It’s well deserved. There is no one-size-fits-all approach to death, and if a patient wants to write about his or her experience, it’s no one else’s business.
But I would like to pick up on an aspect of Emma Keller’s piece that has been completely ignored, concerning not the writer’s motives, but the reader’s. Why do we feel so compelled to follow such accounts of illness, suffering and death?
I started thinking about this in 2012, when I discovered a blog written by the parents of Ayelet Galena, a little girl who underwent a bone marrow transplant. Her parents’ unflagging dedication, humour and love for their daughter was inspirational. When she died, I, together with thousands of Jews globally, shed tears for a family we felt we had come to know.
I was feeling emotionally invested but emotionally drained, too
Late last year, a friend posted a Facebook link to a blog about another Jewish boy suffering from leukaemia in Chicago. I clicked casually. Seven-year-old Sammy Sommer had a cheeky smile. His mother, a Reform rabbi, wrote with searing honesty about the horror of telling Sammy he was going to die, and the family’s determination to fulfil his last wishes.
I found myself worrying about him incessantly, and am still upset about his death last month. But there was more. The Jewish community is tight-knit, and when disaster strikes, we all want to show support. Since Sammy died, my friends have often linked to the heart-wrenching blogs of an American immigrant to Israel who lost his wife to cancer, and another Anglo-Israeli mother battling the same disease.
Time and again, I found myself emotionally invested in these people’s health and wellbeing — despite the fact, I have to keep reminding myself, that I don’t actually know them.
But I also felt emotionally drained, and increasingly uncomfortable that, though these writers are inviting us into their worlds, I am intruding into a space that is more appropriate for friends and family — not strangers on the internet.
Emma Keller wrote: “I felt embarrassed at my voyeurism… Are those of us who’ve been drawn into [Adams’s] story going to remember a dying woman’s courage, or are we hooked on a narrative where the stakes are the highest?”
Good question. I started reading these end-of-life stories out of sympathy to people in my extended community. At what point does one’s interest become unhealthy?
In the internet era, privacy has shed all meaning. Those who post the most intimate details freely must know that people might read them for complex reasons — not all sympathetic.Sometimes it’s all right to tune out.