Pictures of death as public as Simon's violate a century-old American taboo against the topic, says Lawrence Samuel, author of Death, American Style: A Cultural History of Dying in America. According to him, a handful of factors throughout the first half of the 20th century—World War I, the 1918 flu epidemic, modern medicine and the decline of religion—turned death into “this horrible little secret we have, instead of being the most natural thing in the world. Denial became the operative word, because death is oppositional to our culture's defining values, like youth, progress, and achievement.”
Death has now been able to make its way back into the conversation, he believes, thanks to “the narcissism of the self-esteem movement”—our culture's growing enthusiasm for sharing personal information, which opens “a very rare window into a forbidden dimension of life, which makes death part of everyday experience,” he says.
“People are very out and proud about their illnesses,” says Christian Sinclair, a hospice and palliative medicine doctor who co-founded the end-of-life care tweetchat #HPM. “Even before we had social media, we were beginning to see the story lines of 'I have cancer and this is what it's like to go through the treatments.' Social media encourages a lot more of that.”
Sinclair has watched numerous terminal patients turn to social platforms to share what it's like to live with their conditions, so followers can see their dying process unfold in real time alongside food photos, article links and vacation updates. “Social media is a natural extension of 'I want to share my illness experience with you,' because it allows you to develop a social network of both support and attention,” he says.
These online networks often help those suffering serious illnesses face down death in some of their darkest moments.
“The whole process is really therapeutic. Writing a tweet helps me rationalize things or reassure myself,” says Kate Granger, a British doctor who made headlines this year when she decided to forgo treatment for terminal cancer after five rounds of chemotherapy. She started tweeting about the last stages of her illness. Granger had originally taken up Twitter professionally to network and fundraise, but found a home for her struggles as her followers encouraged her to talk openly about her experience with the disease.
Social media support networks tend to enable more frequent and lower-stakes conversations about dying than traditional hospital support groups, which helps stave off the sense of isolation that usually accompanies life-threatening conditions, says Alicia Staley, a three-time cancer survivor and co-founder of the weekly tweetchat Breast Cancer Social Media (#BCSM). During Staley's most recent treatment, she found herself alone in a hospital bed at 3 a.m., in pain and scared. “Any of my west coast friends up?” she tweeted, and spent the next hour and a half talking through her worries with her followers. In the morning, a nurse told Staley she looked a lot better than the night before.
“It's hard to explain that kind of comfort,” says Staley. “When you create this virtual community, it's great because you get a glimpse into people's everyday lives. You see the good, you see the bad, you see the ups and downs. It's a great reminder of what life is really all about, how things keep moving, no matter how you're doing.”