For a week last month, Scott Simon, the popular radio host of NPR's “Weekend Edition Saturday,” stayed by his mother's side in a Chicago hospital as she died. She ate and slept little, and spent her final nights singing show tunes with Simon and holding his hand. “We can get through this, baby,” she told him at one point. “The hardest part will be for you when it's over.”
I know these intimate details because I, like more than a million others, followed Simon on Twitter when news that he was sharing his hospital experience went viral. From July 22 to 29, @nprscottsimon tweeted about everything from the kindness of ICU nurses to the hassle of finding something comfortable to sleep on to his mother's tear-inducing deathbed wit.
Mother groans w/ pleasure--over flossing. "When they mention great little things in life, they usually forget flossing."— Scott Simon (@nprscottsimon) July 28, 2013
Since his mother's passing, Simon's tweets have stirred up a national debate on social media's place in mourning and the appropriateness of making a matter as personal (and morbid) as death so public. The consensus seems to be that as social media-savvy generations age, death will creep its way onto platforms like Facebook and Twitter more and more. But questions remain. What will this do to us? How does talking more about death change the way we approach it, both when it’s close at hand and during our everyday, healthy lives?
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.”
T1: Important to recognize that families often refuse more comfort meds than just opioids. Anti-nausea, anti-anxiety, steroids, etc #hpm— Christian Sinclair (@ctsinclair) August 15, 2013
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.
Chris: My biggest fear is that one day when you're gone I'll forget what you look like & what your voice sounds like... #heartbreaking— Kate Granger (@GrangerKate) August 16, 2013
“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.
Okay - 5 minutes left! Tweet out your best advice for other cancer survivors that are braving the dating world. GO! #bcsm— Alicia C. Staley (@stales) August 13, 2013
“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.”