Brittany Maynard, a terminally ill woman who decided to end her life early under an Oregon law. She died Nov. 1, 2014.
Brittany Maynard, a terminally ill woman who decided to end her life early under an Oregon law. She died on Nov. 1, 2014. AP

By Sharing Death on the Web, Dying May Not Feel So Alone

Mar 17, 2015
Ideas
Steven Petrow writes the Civilities column about LGBT/straight social dilemmas for The Washington Post and is the author of five etiquette books. He’s a former president of the National Lesbian & Gay Journalists Association. Follow him at Facebook.com/stevenpetrow or @stevenpetrow.

Lisa Bonchek Adams is not necessarily a household name, but she may well be remembered for having transformed how we understand death and dying. The 45-year-old mother of three died last week after a very public battle with breast cancer. For eight years after her initial diagnosis, Adams shared her unvarnished story with her 15,000 Twitter followers and untold numbers of blog and Facebook readers. Among her last tweets: “Find a bit of beauty in the world today. Share it. If you can't find it, create it.”

Nothing was too personal to post, including the failure of her chemo to stop the progression of the cancer and the “memory boxes” she made for her children. The result was a bold reframing of the otherwise heavily shrouded truth about death, more commonly shunted in our culture to lonely hospital rooms so as to avoid its “dirtiness and indecency,” in the words of Philippe Aries, author of The Hour of Our Death: The Classic History of Western Attitudes Toward Death Over the Last One Thousand Years.

Adams joins other victims of terminal illness, such as Death With Dignity advocate Brittany Maynard and actor Leonard Nimoy, who have announced or commented on their own deaths via social media. Perhaps it was the volume of Adams’s posts or their raw eloquence, but the radical transparency was remarkable.

I myself have resisted this shift over the years, even (or perhaps especially) when the diarists have been friends. The day in 2006 that my friend Natalia Kraft, then 39, was diagnosed with breast cancer, she started a “Boob Blog.” She continued for three years, until her death, to post photos of herself—hundreds of them. Nat waving goodbye with a forced smile before her mastectomy. Nat belted down to the gurney for a brain scan. She wrote wrenching words about her private hell, including this disarmingly simple sentence: “There are now tumors in my brain.”

I just didn’t get it. I’d been diagnosed with cancer myself some twenty years prior to Natalia and never had any interest in sharing the intimacies of that chapter—and certainly not my appearance. I refused to be photographed once chemo had given me the haircut of a lifetime. No question, I was vain, but I also didn’t want anyone to see, or suffer, the fear in my eyes. “Disease is private,” Joyce Carol Oates wrote in Wonderland. I couldn’t have agreed more.

After Natalia posted that she had brain lesions, her blog went dark for several weeks, until the day her sister posted that she had died. Instead of feeling sad about her passing, however, I found myself angry. Not the sad kind directed at a loved one who is taken too soon. No, I was indignant. Where was her sense of dignity? Of privacy? How dare she show us, and make us share, the fear?

Adams was criticized in much the same way, begged not to turn her private suffering into a public circus. Emma Gilbey Keller asked rhetorically in The Guardian last year, "Should there be boundaries in this kind of experience?" Paradoxically, The Guardian removed Keller’s story after it was revealed that she had violated Adams’ privacy by citing emails in her post and failing to let her know that she planned to publish them.

The year before, NPR’s Scott Simon tweeted his mother’s last days to his 1.3 million followers from the ICU. His story was captivating and emotional, but met with some objection. "I don't think one can be fully present in the moment and tweet at the same time,” Lizzy Miles, a hospice social worker, told the Huffington Post. As a commenter wrote, “This is sad that the only place this man can show his grief is on twitter with strangers. Where is his priest, pastor, family members or a close best friend, I think a keyboard is a sad shoulder to cry on.”

In the years since Natalia’s first blog post, however, I have developed a better understanding of what’s going on here. As it unfolded online, Lisa Adams’ passage to death, like Natalia’s, revealed not just pain and suffering—but also love all around. I recalled how the outpouring of support from Nat’s friends had seemed boundless. Could they take her to the doctor? Make a meal? Read with her? Comfort her? Do anything for her? The “online community,” often and disparagingly described as virtual, became real and tangible.

As Adams' condition worsened in recent weeks, I stumbled upon a new book, @Heaven: The Online Death of a Cybernetic Futurist, which is the story of Tom Mandel, a Stanford futurist who posted online about this own fight with lung cancer two decades ago. I soon realized that the concept of a death blog dates all the way back to the invention of online communities themselves. It was in the fall of 1994 when Mandel asked followers of his on The Well, one of the first online bulletin boards, for advice on how to shake a persistent cough. In all too quick succession, two spots were discovered on Mandel’s lung, which then led to a diagnosis of terminal lung cancer. In less than six months he died; the book is a transcript of those conversations among virtual friends.

About Mandel, Douglas Rushkoff, the noted professor of media theory at Queens College, told me: “[T]he Well was this place where ideas and intellectual debate were always balanced by our deeply human need to connect with others. Tom was always at that intersection of thought and feeling, individuality and community.” In that vein, the outpouring of grief over Mr. Mandel’s death was only surpassed by the efforts of the community to make sense of his passing. As one member wrote: “I’m sure that as your ending here has enriched me, it has enriched many others, a final, inestimable, gift to all of us.”

While it’s common to blame the Net and our smart phones for the isolation that does indeed plague our society as a whole, it must be said that in some very important areas, these technologies and platforms are breaking down barriers. Thanks to my friend Natalia, Tom Mandel, Scott Simon, and now Lisa Adams, death can be seen as an intrinsic part of life.

Steven Petrow is writing a book about death and dying in the digital age.


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