And in a culture that cleaves to youthfulness and positivity and cowers in the face of mortality, this isn’t necessarily a bad thing.
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Gabriele Grunewald, once one of the top middle-distance runners in the U.S., was just 32 when she died in June. But she, her husband, Justin, family and friends, coaches, and near 100,000 Instagram followers were as prepared as they could be. Grunewald had battled a rare salivary gland cancer, then thyroid cancer, and their recurrences for a decade, and she rose to prominence through her public chronicling of the disease on social media. Alongside posts of doctor’s appointments, immunotherapy, and scan results were photos of happy memories: her wedding to Justin, her best races, adventures with family, friends, and her dog. She somehow navigated the uncertainty and sorrow of cancer with hope and motivation.
“When you’re a cancer survivor, denial is not a river in Africa,” she wrote in a post from August 2016, when a recurrence appeared as a large, metastatic tumor in her liver. “It is a place you must live in order to keep going with your life: positively, optimistically believing that it will never come back and that you’ll live a healthy, long, uninterrupted life.”
Death in the U.S. is complicated. Self-defined by youthfulness, longevity, positivity, and personal and professional triumph, Americans struggle to accept and openly talk about mortality because it runs counter to our core cultural values. Public policy ignores it, too: There’s no federal law that grants paid bereavement leave to individuals, though some unpaid options, such as the U.S. Family Medical Leave Act (FMLA), are available. For employers that do offer paid leave, the “period of absence is usually limited to a few days (for example, three paid days for immediate family members and one paid day for other relatives),” according to the Bureau of Labor Statistics. In the U.S., death equates limitation, making grief and conversations around loss difficult to broach.
“There’s a big problem with death denial,” says Candi Cann, an associate professor at Baylor University and author of the book Virtual Afterlives: Grieving the Dead in the Twenty-First Century. She says, as a culture, Americans deny everyday death, while also turning it into a spectacle of entertainment on the news, in video games, on TV shows. “On one level, we’re talking about death all the time, but we don’t talk about it as it’s experienced in real life.”
There’s a capitalist history behind American death avoidance. The Civil War is often recognized as the turning point when rituals began to shift. Embalming became more common as soldiers’ bodies were transported from the South to the North, and the practice gained popularity following President Abraham Lincoln’s train tour, which took his embalmed corpse to 180 cities between Washington, D.C., and Springfield, Illinois. Following the war, the funeral industry needed to continue to turn a profit, and embalmers and funeral homes set out to convince the country that it was illegal or unsafe for families to prepare the dead and that every corpse needed to be embalmed. It worked. What was once a war-time practice has become a $20 billion industry despite, according to the Center for Disease Control, World Health Organization, and the Pan-American Health Organization, providing no public health benefit.
“In an impressively short time, America’s funeral industry has become more expensive, more corporate, and more bureaucratic than any other funeral industry on Earth,” writes Los Angeles–based mortician and activist Caitlin Doughty in her book From Here to Eternity: Traveling the World to Find the Good Death. In the 19th century, “no one would have questioned a wife washing and dressing the body of her husband, or a father carrying his son to the grave in a homemade coffin,” she explains. In our handing over of death to professionals, who often push grief to the side and force families to make difficult decisions on a tight timeline, we’ve distanced ourselves from the communal aspects of comprehending death.
Our mortuary conventions are deeply influenced by this history and help maintain death’s taboo in American culture. But as real life is increasingly represented online, some cultural taboos have fallen away in digital spaces. Topics like sex and body positivity, mental health, and LGBTQ+ representation now have thriving communities that were previously forced underground or nonexistent. And it seems the same could be happening with how we process death, loss, and grief.
“We’ve been ‘doing death’ a long time … lives get disrupted, we gather for a funeral, we try to get on with life,” Cann says. “What’s unusual about social media is that it puts death in our faces. People are shocked by it, and also participating in it and reacting to it.” And, according to 2017 study published in the journal Nature Human Behaviour, the exposure and reaction to death-related social media posts can bring people closer together. Researchers studying Facebook networks found that while there was an expected spike in interaction among friends immediately after a loss, once interactions stabilized, people continued to communicate far more than they did before the loss—for at least two years. A 2010 study had similar results, finding that social networks “enable or empower individuals marginalized by more traditional forms of memorialization.”
Social media’s greatest success might be in its ability to create virtual communities not easily accessed in the real world. Fringe groups and topics, for better or worse, are present online. Cann says communities bonded by loss are common, and often form among people who wouldn’t typically connect. “Someone will post about the loss of a child, for example, and then an acquaintance will reach out to say they lost a child too,” she says. “They all of a sudden have this common bond with another person who might be in their network, but it’s a connection that would never have formed or happened at a funeral where you have this grief hierarchy that needs to be respected.”
These digital connections are spilling over into real-life interactions more and more. The popularity of dating apps, ride-hailing services, and meet-up events have contributed to a norm in which connections are fostered digitally, but often expected to turn into in-person transactions or relationships. Online bereavement is breaking down some memorialization and social barriers, too. But, Cann says, that can be especially difficult for older generations attached to certain rituals. “The process of one photo, obituary, funeral, is kind of out the window online,” she says. “That’s really hard for those grieving and expecting to grieve in a certain way.”
What was once private grief is pulled into public spaces, and open for anyone to react to. In cases of accidental and violent deaths and deaths of children and young people, that publicity has propelled activism. Black Lives Matter followed the deaths of Trayvon Martin, Michael Brown, and Eric Garner, and March For Our Lives followed the Parkland school massacre. Grunewald started the nonprofit Brave Like Gabe, which is dedicated to supporting rare cancer research and empowering cancer survivors through physical activity. Similarly, Claire Wineland, who became a social media star for documenting her life with cystic fibrosis, created a foundation when she was 13 years old to support those and families battling the disease. Others have used social platforms to demystify death and grief. More than 800,000 subscribers follow Doughty’s YouTube channel, Ask a Mortician, where she advocates for death-positive conversations, and wields humor and candidness to topics from advanced directives to what happens to gold teeth after death. Popular blogs like One Fit Widow and several Facebook groups have given those that have lost spouses spaces where everyone “gets it.”
These groups can be digital safe havens in an internet and real world where comfort for grief is sparse. Grievers often report frustration with their community’s inability to express support and condolences that strike the appropriate tone. The syntax of digital grief can be distressing. If those on the periphery of the loss rely on platitudes and emoji, the messages can fall flat for the central grievers, even dilute their feelings. Posts can be triggering for those experiencing loss, particularly complicated grief, where the infinite nature of social media paired with the finality of death can lock some in a bereavement loop—a constant connection related back to the death. Plus, we have yet to sort out our feelings, let alone figure out how to address such grave matters as suicide, mass deaths, and miscarriage.
Even if it’s beginning to peek through the glow of our phone screens, death remains largely invisible in American culture. Our own death and the mourning of people close to us is a uniquely personal experience that fundamentally changes our outlook of the world. Fostering connection around such emotions takes work, and to do it, Americans would need to question the very values we believe ensure economic and social success. It’s presumably why we applaud those like Grunewald. In the face of death, she maintained the ideals that hold much of American culture back when faced with mortality. We could all do well to get a little more real about our shared reality. “Yeah, duh! There’s a lot about death that sucks. It’s okay to feel bad about death,” Doughty says in one of her videos. “But death is a journey that’s always part of your life. You might as well get comfy with your companion.”
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