Most of us think of grief occurring after a death. But anticipatory grief, or pre-bereavement, the painful emotions we feel before death, is experienced by many people facing the impending loss of a loved one or their own death. But as this experience is spoken about less often, some find it difficult to express the deep pain they are feeling and fail to receive the support they need.
Claudia Tanner spoke to Max Cassily, a 28-year-old area manager at Aldi, from Canterbury, Kent, about how he and his family dealt with his mother Nanda’s terminal illness at 54.
My dear mum was diagnosed with sarcoma, a cancer of the bone and soft tissue, in 2017. She’d shrugged her symptoms off as back pain.
She’d had cancer – of the breast – two years earlier and we thought we’d been through it all and it was over, she’d beaten it.
But this time around, the doctors told us straight: it was incurable. Our lovely, kind mother was going to die. They said she had three months left.
I remember just after we were told the bad news, all four of us – myself, mum, my dad Steve and my sister Ruby who is two years younger than me – all hugging and crying as we sat on a hospital bed.
They say there’s five stages of grief – denial, anger, bargaining, depression and acceptance. Perhaps because we had dealt with my mum having cancer before and we had already felt all the anger and sadness, we were able to move more quickly to the acceptance stage. It was dad who said to us something along the lines of “We have got to do this, and accept this is happening.”
We knew we had to embrace this, talk about it, plan for it, cry about it.
I remember leaving the hospital, and the daughter of a woman with Alzheimer’s who was in the bed next to my mum hugged us and said she had loved sitting and listening to our conversations.
Open attitude about death
Last time it was all about staying positive and helping mum pull through. We knew this time, that approach wouldn’t help at all. It was a difficult decision to stop “fighting” her illness, but this was part of the process of accepting what was happening.
You may feel angry, mum was too young to go. It wasn’t fair. But you are so sharply aware of the fact there is little time to waste. Mum was going to die and we didn’t have long. We wanted to cherish the precious time we had left with her and make the most of it. Mum lived 180 miles away from me in Eastbourne, so I arranged with my employers to allow me my two days off a week to be taken together so I could spend quality time with her.
We took a really open attitude to talking about death and making practical arrangements. We announced on Facebook and other methods to everyone who knew Nand, as she was know , that she didn’t have long left and invited people to come visit our house week in, week out.
Mum had been a drama teacher who had spent half her time in Cyprus. People from all over, some she hadn’t seen for years, were grateful for the chance to say goodbye. They would apologise for breaking down, and we’d assure them it was okay. It’s only human to get upset.
We talked with mum about what funeral arrangements she wanted. She wanted to be cremated. She loved pink and was known as “The Pink Lady” due to her hair colour. She wanted a pink casket and a pink hearse. We were able to find the first but not the latter – there mustn’t be the demand for them!
She didn’t wan’t the flowers to go to waste and be cremated with her. She requested that everyone take a single stem home with them to enjoy.
Video camera to cherish memories
We had set up a video camera to record our chats with Mum. This helped with the practical side of remembering her wishes. It also allowed us to cherish the memories she shared.
There were plenty of tears, sad ones and happy ones. It was difficult watching her break down and grieve her own death.
But there were positives. It was a time to learn more about my mum’s past. I knew dad didn’t have a great memory so I wanted to take the chance to ask her all about her childhood and upbringing.
Mum was 26 when she met dad and he was just 18. It was unusual in those days, and she was the one who dealt with the more adult things – she was the breadwinner who got them their first house.
At one point, she looked deep in thought and she turned to me and my sister and she said, “You are all okay, you’re all happy aren’t you?” She knew Ruby had her boyfriend and child. She told me I was going to marry my girlfriend Nina. To be honest, I hadn’t even thought of marriage at that point. But mum, you were right, Nina and I tied the knot earlier this year.
‘Talk about everything. It won’t change the fact that someone you love is about to die; but I promise you, it will certainly help’
We had lots of trips out, coffees and lunches, until mum got too tired and wanted to stay indoors. The last month was hard watching her struggle for breath.
On 27 February 2018, mum was rushed to A&E. She passed away while I was travelling in a desperate rush to get there on time. I remember balling my eyes out while driving, and not wanting to stop as I wanted to get to the rest of my family as quickly as possible.
I’d never seen a dead body before. I found it really helped to see Mum’s. She looked so peaceful and not in any pain, in stark contrast to the last few months.
Over 250 people attended her funeral. We live streamed in on Facebook and thousands watched it from 21 different countries.
I found it so comforting to watch back the videos of Mum in the months after her death. I got to see her laughing at jokes, crying at the situation, chatting about her first house that she bought 30 odd years ago. Just seeing how she was in her normal, every day life was lovely.
I started a blog about grieving to help other people deal with loss, which can be found here. It can be so easy to go into denial and not face difficult emotions when someone you love is dying. If I can help one person going through the same, that would be great.
Talk about everything. It won’t change the fact that someone you love is about to die, but I promise you, it will certainly help. I had felt I had to be “the strong one” to help everyone else out. So when someone asked how I was, I’d say “Yep, I’m fine”, when really I wasn’t. So I called a men’s mental health line. It helped to speak to someone I didn’t know.
Pre-grieving is an absolute emotional rollercoaster. At times you’re going to be frustrated, sad, angry and even happy, and that’s fine.
Max’s tips when facing a loved one’s death
Max’s blog outlines several pieces of advice:
Talk – if you don’t feel comfortable sharing with someone close speak to a professional. It’s okay not to be okay.
Capture you loved one on video – not only does it encourage you to talk through things, it also means you have memories on record and it can be a comfort to watch your loved one when they are gone.
Look after yourself – you cannot expect to look after and support your loved one if you don’t look after yourself.
Encourage people to say their goodbyes – it’s a chance to reminisce about old times and just generally have a laugh and forget about death.
Plan the funeral with your loved one – you’ll find comfort in knowing you’re following their wishes.
Embrace normality- try and do normal things as much as possible. Go for coffees, shopping, a meal, have friends over, watch TV, get a takeaway, and so on. A loved one with cancer is still a loved one, so, when possible, treat them the same and do the stuff you always used to do together.
Ben Boyer can still picture the expression on his wife’s face that night six years ago, as they talked over dinner at their favorite Italian restaurant in London. It had been four years since Xenia Trejo had been diagnosed, at the age of 33, with a malignant brain tumor that doctors said would eventually end her life. But as she sat across the table from Ben that evening, Xenia radiated joy. She felt strong, and after numerous rounds of treatment, her doctors had just told them that Xenia’s tumor was stable enough to do something she had long dreamed of: pursue a pregnancy. Now Xenia was asking Ben, What do you think? Should we try?
They had always planned to be parents, and the possibility had hovered even since Xenia’s diagnosis, but now it finally felt within reach. “Let’s do it,” Ben told her. By the time they left the restaurant and walked home together, they knew they would try to start a family. In that hopeful moment, the reality of their circumstances felt far away.
There are countless parents who don’t live to see their children grow up, but most of those tales involve unforeseen tragedy. The story of Ben and Xenia was different. When they learned of her illness, the future Xenia and Ben had long envisioned for themselves came undone, and an urgent reckoning followed. What would they fight to keep of the life they once imagined? In the face of a certain ending, they chose to create a beginning.
The number of people who confront this exact extraordinary convergence of birth and death is small enough that no one knows precisely how many are out there. “It is probably a very small number, though not an insignificant number,” says David Ryley, a fertility specialist at Boston IVF and a clinical instructor at Harvard Medical School. “I think you won’t find that data, because it hasn’t been collected.”
Yet there are outliers facing terminal illness who have forged ahead with plans to have children. Among them are a few who have risen to cultural prominence after sharing their stories: Paul Kalanithi, the neurosurgeon and author of the best-selling, posthumously published memoir “When Breath Becomes Air,” dedicated his book to his infant daughter, who was conceived after Kalanithi was diagnosed with metastatic lung cancer. Nora McInerny, host of the popular grief-focused podcast “Terrible, Thanks for Asking,” has widely shared her experience of having her son, Ralph, with her late husband, Aaron Purmort, who learned he had brain cancer before they were married. Ady Barkan — a prominent liberal activist who was diagnosed three years ago with amyotrophic lateral sclerosis, or ALS, a neurodegenerative disease for which there is no cure — recently welcomed an infant daughter, his second child with his wife, Rachael King.
These are distinctly modern stories. For couples who confronted grim diagnoses before the turn of the millennium, the option to preserve their fertility was much harder to find and less likely to succeed. But the ability to freeze and test embryos improved dramatically in the early 2000s, bringing with it complex existential questions. What would it mean to have a baby in these circumstances for the parent who would die? For the parent who would live? For their child?
Xenia, Ben recalls, was not inclined to dwell on questions she felt she couldn’t answer. Her “entire M.O. was to live one day at a time, and she did not want to entertain larger metaphysical and moral debates about what this meant,” he says. He, however, was initially more hesitant. “I was a lot more nervous about what that meant for us, for her, and she was the one saying, ‘We should do it,’ ” Ben says. “For her it was, ‘I have to do this.’ I think she was put on this Earth to do it. She loved kids so much, it was not even a question. For me, I wanted to do whatever she wanted to do, but I also think I played the devil’s advocate more than once — ‘Here’s one possible reality, here’s another possible reality.’ But Xenia’s entire thing was, ‘If I let myself get mired in all the theoretical possibilities, I won’t be able to live a life at all.’ ”
And so they didn’t spend much time trying to decipher an unknowable future. Once the doctors said there was no reason to expect that a pregnancy would threaten her health, Ben says, “it was a given that we were going to try to do it.” In February 2014, Xenia gave birth to their daughter, Ella. Ben still recalls the euphoria of watching the nurse place their newborn on Xenia’s chest. He still can’t quite believe the song that played on the operating room radio, the refrain resounding in that moment: God only knows what I’d be without you.
Ben had first met Xenia in 2003, when they both worked for the BBC’s Los Angeles office. He was drawn immediately to her warmth, humor and adventurous spirit, and they fell in love quickly. Three years into their relationship, Ben transferred his job to London, and Xenia followed soon after. They were in their early 30s then, overjoyed to be living together for the first time in their tiny studio apartment. Ben remembers one particular afternoon in the winter of 2007, when they walked home together through falling snow, and he felt a deep sense of belonging: They would be married, have a family together, grow old together.
But in 2009, Xenia was struck with a wave of debilitating headaches. A seizure soon followed, which led to the discovery of the tumor in the frontal lobe of her brain. The doctor who delivered the news was shockingly blunt. “He immediately said, ‘So, you know, I assume you understand that you might die within a year,’ ” Ben recalls. “I remember thinking: This can’t be right.” As it turned out, it wasn’t: The couple quickly sought opinions from other doctors, who explained that while the prognosis was ultimately terminal, there was no reason to predict such a grim timeline.
They had been together for six years by then, and though they were not yet engaged to be married, their commitment to one another was absolute. Before Xenia started chemotherapy, the couple froze several embryos.
From the beginning, there were doctors who offered statistics, percentages, who told them how likely she was to still be alive in three years or five. There were also doctors who voiced a more universal truth: We can’t know with certainty what will happen, or when. Some patients with Xenia’s cancer died soon after diagnosis; others lived two decades or more. “Some people think of these things mathematically,” Ben says. “Some people think of them cosmically.” Xenia had always been, would always be, among the latter, he says. She would not be consumed by the inevitability of loss. “She refused to live like this was a death sentence,” he recalls, “even though it was explicitly a death sentence.”
Her treatments halted the progression of her illness, allowing them to resume their lives, and in 2011, they planned their wedding. Ben remembers the question Xenia once asked him, a few months before the ceremony: Are you sure you still want to do this?
He was. They were married that September on a historic ferryboat moored in San Diego Bay, surrounded by their loved ones. And two years later, over that dinner in London, they decided to move forward with building a family. They wound up not needing the embryos they’d frozen; Xenia became pregnant soon after they started trying to conceive.
From the moment Ella arrived, Xenia embraced motherhood, Ben says; she relished every minute of her 14-month maternity leave. She had always been a spontaneous and outgoing person, so it didn’t surprise Ben when she hopped on a train to Scotland with their baby to join Ben at a comedy festival, or showed up to bustling happy hours at their favorite pubs with Ella in tow. “We had an awareness that there was a finite number of experiences we were going to share together, and we knew we had to grab on to those moments,” Ben says. “We wanted to get out and experience whatever we could while we still could.”
Late in 2015, Xenia suddenly suffered an onslaught of seizures, and doctors confirmed that her cancer had begun to advance. Within months, the family moved back from the United Kingdom to San Diego, Xenia’s hometown. Her health continued to decline, and in the fall of 2017, Ben, Xenia and Ella moved in with Xenia’s parents, settling in the little house in San Ysidro where she had grown up. In those days, Xenia sometimes spoke to Ben of her sorrow for what she knew was coming. “She would say things like, ‘I’m so sorry you got stuck with this,’ ” he remembers. “She would ask if I regretted anything. And I would say, ‘Don’t be ridiculous.’ I would tell her, ‘This was the best thing of my whole life, that I met you, that I got to have this time with you.’ ”
Toward the end, a therapist suggested that Xenia might consider writing a letter to Ella, something she could read years after her mother was gone. Ben and Xenia were both aware of viral stories about dying parents who left behind written or recorded messages, birthday cards for their children to remember them by. But Xenia didn’t know who Ella would be at 16 or 20; she did not want her daughter to feel bound or burdened by parting words from a mother who had long been absent, Ben says. Xenia wanted Ella to be free.
Xenia’s decline was swift, her illness eroding her cognitive functioning, robbing her of language and distorting her personality. Through the darkest of those days, Ben says, Ella remained the one immovable tether to Xenia’s sense of self. Sometimes she would try to talk to her daughter, and couldn’t. “This,” Xenia would say to Ella, the only word she could summon; “this, this,” she would say with mounting urgency, and Ella would grow unsettled by the sudden intensity. But more often, there was an obvious contentment when the two were together. “Ella would walk in the room, and Xenia would immediately smile and become animated,” Ben says. “She was always so happy when Ella was around.”
On her last morning, Xenia awoke unable to speak. Ben and Ella lay with her as the house filled with family. She died that afternoon, a bright Sunday in May: Mother’s Day.
Buried in the digital archives of MetaFilter, an online message board that predated Reddit, is a question posed by an anonymous husband in 2010; he explained that his wife had been treated for an aggressive brain tumor, but they desperately wanted to be parents, and he wondered whether having a child was a wise or ethical choice. Hundreds of replies unspooled below his post, passionately voicing every imaginable viewpoint:
“You’re in for a world of trouble if you do it. But it may be the thing that you need to do.”
“Having lost a mother to cancer … I do think it is selfish to knowingly bring a child into the world knowing full well that the child will have to watch one of its parents die, and then grow up without them.”
“As someone whose father died when I was eight, I think you should do it.”
The medical community has grappled with this question as well. In 2005, the American Society for Reproductive Medicine convened a group of reproductive biologists, obstetrician-gynecologists, pediatricians and medical ethicists to weigh in on whether cancer survivors should be allowed the opportunity to reproduce, given the potential of a decreased life span. “It’s important to note there, the potential of a decreased life span,” says David Ryley, the Boston-based fertility doctor, who specializes in treating patients who have been given a cancer diagnosis. “Nothing in medicine is zero percent. Nothing in medicine is a hundred percent.”
The expert panel’s formal conclusion was clear, Ryley says, reciting it aloud: “The child in question will have a meaningful life even if he or she suffers the misfortune of the early death of one parent. While the impact of early loss of a parent on a child is substantial, many children experience stress and sorrow from economic, social and physical circumstances of their lives.”
“I could get hit by a bus today. How do I judge a couple who wants a child but may suffer misfortune?” Ryley continues. “Reproductive freedom is well established in this country, and this is a personal choice. We have patients seek counseling to help them get through that minefield, to not let them feel judged, to know that the choices they make are in the best interest of their life, their family, their relationship, and to understand that what is important is how they feel.”
Those sentiments are echoed by Merle Bombardieri, a therapist and author in Massachusetts who specializes in parenthood decision-making and often urges her clients to focus on inward reflection. For more than 30 years, she has counseled couples and individuals who struggle to decide whether to have a child, and she has worked with numerous people who faced grave health concerns.
This subset of her practice requires a somewhat different approach, she says, because they’ve already leaped beyond what she views as a foundational objective of her work, which is to ensure that her clients have considered their decision within the context of their own mortality. “Do you know that you will die one day?” Bombardieri says. “On one hand, that’s a ridiculous question, because everybody knows they’re going to die one day. But do you really know? Have you thought about what that means? Are you comfortable with your choice, knowing that you won’t be here forever? If you are, then you can feel more certain that it is the right choice.” For clients facing dire diagnoses, “this awareness has already come for them,” she says, which leaves other, more logistical factors to sort through: What is the prognosis? What sort of support system — community, family, friends — is available to offer help? What is the family’s financial situation?
Still, Bombardieri says, the most powerful motivations come from a more visceral place, where a person must reconcile hope with reality, and decide what they feel is still possible. “There are people who have always believed that they would have a child someday,” she says. “And, of course, there is the idea that — even if you die — you have left a child behind in the world. And that, too, is a kind of survival.”
Ella’s fingers grip her father’s, tugging him along as they walk a winding path through the San Diego Zoo, surrounded by life in all its strangest and most extraordinary forms: cheetahs and rhinos, gorillas and parrots. Ben and Ella are talking about how Xenia loved this zoo, and Ella, now 5, suddenly realizes that she isn’t sure what her mother’s favorite animal was. “I think I don’t know,” she says, her brow furrowed behind her violet-rimmed glasses, but she offers up her own favorite instead: “Flamingo!” she shouts.
They used to come here often as a family of three. These days, Ella usually visits with just her dad, or sometimes with friends she’s made at a therapy group for children who have lost a parent. On this idyllic October afternoon, the children’s area of the zoo is closed for renovation; when it reopens, it will include a brick engraved with Xenia’s name.
Ben took many photos of Xenia in this place, some of which are tucked into albums that Ella loves to look through. Later in the evening, after Ben and Ella return home from their outing, Ella sits cross-legged on the living room couch, studying an image of her mother outside the flamingo enclosure at the zoo. Xenia’s pose imitates the birds, one leg bent at the knee. “She has a pink shirt!” Ella says.
She pulls another album into her lap. “This is my favorite picture,” she says, pointing to a photo of herself at 5 months old, lying in bed beside her mother. Xenia is sleeping, a sheet drawn to her chin, but Ella is wide-awake, flashing a mischievous smile at the camera.
This particular album, capturing their first moments as a family, was Ben and Ella’s last gift to Xenia. Ella turns the pages past pictures of her birth, her ecstatic parents cradling their swaddled newborn. She resembles both her mother and father, but in photos with Xenia, the likeness is unmistakable: Ella has Xenia’s light brown hair and bespectacled dark eyes, the same wide grin and expressive eyebrows.
Their similarities run deeper, surfacing in new ways in the months since Ella started kindergarten at a Spanish immersion school, where she is learning to speak fluently in the native language of Xenia’s Mexican American family. The child’s exuberant sense of humor, her kindness, her boundless enthusiasm for Halloween, her deep sensitivity to music — to Ben, all of this feels like glimmers of Xenia.
Ella is growing up in the city where her mother was raised, where Ben now feels he has to stay. “Everyone is here,” he says. Everyone includes his parents — who own the condo he shares with Ella, and are his neighbors down the hall — and his sister’s family, and Xenia’s family, too. He can’t imagine taking his daughter away from here, even though it is a difficult place to find work in television production. When he and Xenia decided to have a child, their closeness to their families was at the forefront of their minds, he says. “We knew: This child will be surrounded by love.”
Outside Ben and Ella’s living room windows, the sun drops over San Diego Bay. When Ella reaches the end of the album, Ben scrolls through older photographs on his laptop. There is a portrait of Ben and Xenia’s wedding party, pictures of Ella trick-or-treating in a tiny bat costume, splashing in a backyard baby pool, sitting on her mother’s lap at Legoland.
Ben pauses on a photograph of Xenia framed by an array of vivid bouquets. “This was right after she was diagnosed,” he says. “Those are flowers that people sent.”
“What is ‘diagnosed’?” Ella asks.
“After we found out Mommy was sick, people sent flowers to say they were sorry about that,” Ben explains.
Ella nods and falls quiet. Then she smiles. “I wish I was a flower girl at your wedding,” she says.
There are questions that hover over the years ahead: What might Ella’s life be like when she is older — when she understands more about how she came into this world and what happened to her mother? How might she relate to Xenia’s memory? Every experience of grief is unique, its reverberations often impossible to predict. But the Kim family, who were patients of David Ryley 14 years ago, offers one glimpse of how a profound decision made in staggering circumstances can look more than a decade later.
Stacey Nichols met John Kim at a mutual friend’s party in Boston in spring 2003. He was an outgoing and deeply empathetic man with a “boundless wellspring of patience,” Stacey says — qualities that served him well as a school counselor who worked with kids with special needs. He moved in with Stacey three months after their first date; they got engaged that Thanksgiving.
Before their wedding in August 2004, John began suffering from sporadic gastrointestinal issues, and his doctor ordered diagnostic tests. The results were concerning, and further scans showed lesions on his liver. Three weeks after they were married, an oncologist told them that John had Stage 4 pancreatic cancer. “It felt like a complete emptying of my soul,” Stacey says of that moment. “All I could do was just be there, trying to make myself understand: ‘I’m here. I’m actually me. I’m not going to wake up from this.’ ”
Even as they were reeling, John wanted to know how his chemotherapy might affect their chances of having a child. The doctors didn’t have an answer. “There hadn’t been research on how this particular regimen affected fertility,” Stacey says. “The gist of what his oncologist said was, you know, patients who do these treatments for pancreatic cancer aren’t having kids; they die.” But John had always wanted to be a father, and they had to decide quickly whether they wanted to preserve that possibility. They postponed John’s treatment for one week so he could visit a sperm bank.
Eight months later, with John responding well to chemotherapy, the couple set out on a walk together and talked about starting their family. For the first time since their wedding day, Stacey felt a rush of pure joy and anticipation. “We didn’t know what was going to happen, but it felt almost defiant, somehow,” she says. “We felt like, this is a long-term plan. It is a decision only the two of us can make.”
They found out Stacey was pregnant with twins, a boy and a girl, in October 2005. When the babies were born the following June, John wrote their full names in the pages of a journal — Madeleine Ji Yun Kim and Riley Chen Woong Kim arrive!!! — alongside delicate drawings of fireworks. The exhilarating haze that followed lasted six months, Stacey says, before John’s cancer resumed its assault. The twins thrived as their father began to fade.
The exact chronology of John’s last days (what he ate, what time he took his medications — details Stacey could once recite with precision) are lost to her now. She remembers clearly, though, how she left the door to their bedroom open as John rested there in his final hours, so the sounds of his family living their day — the babies playing and giggling, splashing in their bath — could still reach him.
After John died in April 2007, Stacey made a point to speak of him often; she wanted her children to know that the subject of their father should never feel taboo. “They do love it if I bring him up; they love when I tell stories about him,” Stacey says. “I make sure to continue to remind them that it’s okay to grieve his loss for their whole lives, in whatever way they need to.”
Ten years ago, Stacey and her children moved to Portland, Ore., to be closer to her parents. Stacey is now 47, the director of marketing and communications at Lewis & Clark College, her alma mater; Maddie and Riley are 13, on the cusp of their high school years. Lately, Stacey says, they have started asking more questions about John, about what he was like, the similarities they share with him. As they’ve grown, they’ve become more aware of their biracial identity, their connection to John’s Korean heritage. They have lived all but 10 months of their lives without their father, and so their grief is not the loss of a known reality, but the absence of a possibility: Would John, who used to read Julia Child’s recipes aloud to Maddie, have celebrated his daughter’s love of cooking? What would it have been like for Riley to share his passion for video games with his dad, who was also an avid gamer? “I like to play chess, and I run cross country,” Riley says. “Those are things I think he would have been into.” He smiles. “You know, he was into nerd boy things, and I’m like that, too.”
Maddie thinks it must have been difficult for her dad to decide to become a parent, knowing he would miss out on so much of their lives. “But I’m so glad he did it. I think Mom would have been lonely. I mean, David is great,” she says, referring to Stacey’s boyfriend of several months, with whom the twins share an easy rapport. “But I still think she would have been lonely without us. And I feel like Dad’s entire side of the family would have missed him a lot more. They tell us all the time, ‘Oh, you really remind us of your dad, and that’s a really good thing.’ ”
The twins are especially close, often ending their days by taking walks together around the block to decompress and tell each other what’s on their minds. (“Some people say their brothers are annoying, but I really love my brother,” Maddie says.) Even without their father, Maddie says their family has always felt like enough. She wishes her dad could somehow know this. “I would like him to have that reassurance,” she says. “To be able to know that everything is okay, and that we are happy.”
John is the beginning of their story, and his family has since lived their way into a chapter he would not recognize, here in their lovely house on a tree-lined street in North Portland. His ashes rest on a shelf in the living room, a colorful gathering space strewn with books and musical instruments, often filled with the voices of visiting friends and family.
Even 12 years on, in this place he never knew, John’s absence sometimes echoes with startling immediacy: Stacey realizes with a jolt that she forgot to put on her wedding ring, and it takes a moment to remember that she hasn’t worn it in years; Maddie laughs, and her expression is suddenly her father’s; Riley holds Stacey’s hand and instinctively traces his fingertips across her cuticles, exactly the way John once did. They are here, and John is where John is, and there are moments when it still feels like the door between is open.
Ben has never forgotten something his mother once told him, soon before Xenia died: that for Ella, losing her mom would be the defining fact of her life. He thinks about this, in moments when he feels his aloneness most acutely — at play dates with other families, where he is often the only single dad, or when Ella asks for a French braid and he realizes he doesn’t know how to style her hair that way. “We just have to do the best we can for her,” he says.
When Ella decides to be a jellyfish for Halloween, Ben strings white lights from a clear umbrella and transforms his giddy kindergartner into a glowing sea creature. The two sing together, loudly and often, especially in the car. If there is somewhere Ella wants to go, something she wants to see, he takes her. This is Ben, but it is also Xenia, he says. Her way of being has become his.
And so, he feels, there is a sense of Xenia that is still palpable to Ella, even as her own recollections begin to fade. “Xenia would often say, ‘Will Ella remember me, or won’t she remember me? And which is better?’ ” Ben says. “And sometimes Ella will turn to me now and look worried, and she’ll say something like, ‘I think I don’t remember Mommy.’ ”
Ben does all he can to preserve the connection between Ella and her mother. On the first night that Ben and Ella lived alone together, the day they moved into their condo overlooking the bay, he tucked his daughter into bed in a new room and began a new ritual: Before Ella went to sleep, they talked for a little while about Xenia. At first, it was almost ceremonial; in the year that has since passed, it has become less of a nightly practice and more of an ongoing conversation, a constant referencing of things that Xenia once said or did or loved. Once or twice a week, Ella asks Ben to retrieve an old video camera loaded with dozens of hours of family footage, so they can watch it together.
Tonight, Ben is the one to suggest this, after Ella finishes her bath and changes into her pink nightgown. “Do you want to watch a couple of movies?” he asks, and Ella immediately shouts “Yes!” and dashes to her bedroom. Ben lies down on her twin bed and turns the video camera on, pointing the built-in projector toward the ceiling. “Hey, Ella, this is your first birthday party,” he says, and she grins and climbs in the bed beside him.
Ella will not remember her first birthday party. But someday she might remember watching the video of her first birthday party, and listening to her father tell her what the celebration was like. She might remember the way her mother looks in the film from that day, her slender frame draped in a striped top as she kneels and fills a large giraffe piñata with fistfuls of candy.
“Hi, Mommy,” Ella says, wiggling so her head rests on her father’s stomach. She watches as her family gathers around a picnic table where she and her parents sit before a cake, and Xenia gently rubs her baby’s back as everyone starts to sing “Happy Birthday.”
The scene unfolds, and the minutes tick past Ella’s bedtime. “Just one more, okay?” Ben says, and fast-forwards to a video taken when Ella was 3, at her first swimming lesson. When Xenia appears beside the pool, the progression of her illness is painfully evident — her hair unevenly shorn, her cheeks swollen from steroids.
“She looks very, very …” Ella trails off. She seems unsettled and climbs off the bed, crawling on the floor.
“Very what?” Ben asks her.
“Very, very …” but Ella can’t or won’t summon the next word.
In the film, Ben is talking to Xenia: “Impressive, right?” he says of their daughter’s enthusiasm in the pool, and Xenia nods and smiles.
In the bedroom, Ben is talking to Ella: “Mommy is gonna say something now,” he says. “Are you watching?”
“I’m watching,” Ella says as the camera closes in on Xenia’s face.
“We are very proud,” Xenia says, enunciating slowly.
They are together like this for a little while: Ella on the floor, gazing upward. Her father in the bed. Her mother in flickering beams of light. Then Ben says gently, “Okay, baby, it’s time for bed,” and turns off the projector. The past dissolves into shadows as Ella crawls back into the blankets, and the two of them lie there, side by side.
Oliver Peyton knows one thing about his death: Thin Lizzy will play at his funeral.
His Spotify playlist is already queued up. Peyton is Irish, and the ‘70s Dublin hard rockers behind “The Boys Are Back in Town” played the first concert he ever attended. He’s thinking that “Dancing in the Moonlight (It’s Caught Me in Its Spotlight),” off 1977’s Bad Reputation, might be the first song to kick things off.
Peyton’s funeral soundtrack doesn’t sound even slightly sepulchral. It also features ’90s groove tracks by Arrested Development, De La Soul, and A Tribe Called Quest, a nod to the first London establishment he ever opened (a hip-hop club). Peyton is nothing if not an entertainer: The longtime restaurateur is a judge on the BBC’s reality chef show, Great British Menu, and he earned an honorary British order of chivalry for his service as a caterer. When it all goes down, Peyton means for his funeral to be something special.
“I want every detail of my funeral to be choreographed,” Peyton says. “I don’t want my family or friends to think, ‘I wonder what Oliver would have liked.’ I think it’s so rude, in a way.”
Six years ago, when his father died, he came to realize that there isn’t enough choice in death. Since Victorian times, Peyton says, Great Britain’s death care industry has been served by a single prevailing model, a traditional means of commemorating life and ritualizing mortality—and it doesn’t suit him. So Peyton launched Exit Here, a funeral parlor, if that’s the word for it, in London’s Chiswick neighborhood.
“After my parents’ deaths, I just kept thinking, there’s no choice. You’re just on a conveyor belt,” Peyton says. “I didn’t achieve the things I know that certainly my father would have wanted. I was too traumatized.”
At first glance, Exit Here looks like a concept cafe, the sort of place where you might expect to order a flat white by day and a craft pour by night. The splashy, neon-backlit script over the entrance could be promoting a brasserie or raw bar (both of which Peyton has experience operating) instead of a funeral home. Nevertheless, Exit Here is a full-service provider of funerals and mortuary services, from traditional wakes to exotic possibilities.
“If you want a party on a beach in Goa, we’ll organize that for you,” Peyton says.
Style distinguishes Exit Here from the competition: It’s death, but hipper. The shop stands out for its considerable cheek (and chic). For example, Exit Here offers bright-colored urns shaped like capsules, a punny line called the “Bitter Pill” series. Bespoke caskets include a Día de los Muertos–inspired option and an English willow wicker coffin. Inside, teal and goldenrod hallways, blonde wood floors, and arched doorways (designed by Transit Studio) set Exit Here apart from traditional funeral-home interiors, with their dark woods and drab carpets.
There’s a growing movement to update the funeral business with offerings that reflect a wider range of customer choices. Los Angeles mortician and author Caitlin Doughty, who runs the Undertaking L.A. funeral service, also founded a collective of death care professionals and academics called the Order of the Good Death to help speed the adoption of more inclusive, less environmentally harmful, and more “death positive” practices within the industry. Other efforts, like the nonprofit Death Over Dinner and the Death Cafe initiative, encourage groups to talk openly about their demise, via public dinner events. Exit Here is entering an increasingly vibrant market for style-forward dying.
Since its opening a month ago, Exit Here has hosted four funerals. Peyton won’t talk about them in detail, but he says that the private services have ranged from the traditional to the extravagant. Everyone who has come through his doors has asked for something different. Funeral homes largely serve local neighborhoods and communities, and Exit Here is no different in this regard. Barry Pritchard, Peyton’s partner in the endeavor, is a third-generation funeral director who serves on the board of the U.K.’s National Association of Funeral Directors. All the services associated with a traditional funeral home, from collecting and preparing the body to hosting the reception, are available; the options simply go further.
When I ask him what an extravagant funeral might look like, he gives as an example the services for Aretha Franklin. Her televised 2018 funeral featured testimonials by the likes of Reverend Jesse L. Jackson and former President Bill Clinton, performances by Chaka Khan and Ariana Grande, and a procession of more than 100 pink Cadillacs. Peyton asks me whether I would describe the service as tasteful (I would). So why shouldn’t there be a category of funeral that falls somewhere between a faltering recitation of “Danny Boy” and a fantastic spectacle for the Queen of Soul?
Peyton outlines his philosophy on funerals this way: People plan their own birthdays, weddings, holidays, and vacations. Exit Here is for people who would like to plan their final departures as well. Plotting out the details, from the menu to the music, takes a burden off the shoulders of grieving loved ones and gives a person more control over the terms of their final departure. Peyton acknowledges the discomfort that some people might feel at the prospect of a trendy funeral home, but he says that’s ultimately discomfort with death itself. Convention does not ease a loved one’s passing, in the end.
So, what if I want to have a Star Wars-themed funeral? Somebody’s already asked him for a Star Wars casket, he replies, and he’s trying to figure out how to honor that request. Choice is the force behind Exit Here. In an increasingly secularized Britain, more people are searching for rituals that aren’t explicitly religious; other might like some extra flexibility within sacred traditions.
“Having spent most of my adult life in the restaurant business, you think you’re just helping people, and you are—you’re helping people to have a good time,” Peyton says. “But funerals are far more emotional. There’s far more attached to it. People’s grief manifests itself in different ways at different times. Being able to help people through that is a good thing.”
He adds, “It’s still, to me, a hospitality business. People say, ‘Oliver, why are you doing this?’ It’s about taking care of people.”
Costs for services at Exit Here run “a tiny bit above mid-market” for a traditional funeral, according to Peyton. The price point isn’t meant to be exclusionary. For services extending beyond traditional receptions, the prices run the gamut. “If you want a cheap funeral, you’re not going to come to us,” Peyton says, but “we’re definitely not out of reach.”
Peyton and his partner weren’t expecting to do any funerals before Christmas. But there’s clearly a lively market for Exit Here: About four weeks in, Peyton is already thinking ahead to opening as many as four similar establishments in the future. He says that he is fielding regular queries about franchise opportunities, something he hadn’t predicted (and isn’t considering for now). While Exit Here might look like an effort to disrupt the industry of death, there isn’t any private equity backing the venture. A service is still a service.
Peyton is willing to describe one funeral in detail: his own. It will begin with a lunch, he says. At about 3:00 p.m., when everyone’s thinking about heading home, they’ll bring out the really good wine. From there it’s DJs spinning his favorite music from different periods of his life—Patti Smith, Desmond Dekker, the Ramones—so that people will leave with a lasting memory.
If I were to rank all of my fears, death — my own, and that of the people I love — would definitely be at the top of my list. It’s a pretty universal source of anxiety, whether we voice it or not. We cling to this fear, even if it won’t change the reality that all of us will die, eventually. The death positivity movement, however — which aims to shift this perception by encouraging a larger dialogue about death — is steadily growing.
Our anxiety surrounding death stems from how we tend to distance ourselves from the topic, explains Katherine Kortes-Miller, an assistant professor at Lakehead University and author of Talking About Death Won’t Kill You: The Essential Guide to End-of-Life Conversations. For many, “the only death and dying we see is on movies, where it’s heightened and traumatic, and not the death most of us are going to experience.”
The goal of death positivity is to “take death out of the closet,” Kortes-Miller says, so we no longer see it as a Big Scary Thing, but as an integral part of life. The nonprofit organization Death Cafe, for instance, has hosted thousands of loosely-structured events where people meet to “eat cake, drink tea, and discuss death,” according to its website.
Another group, Death Over Dinner, has a website that helps people plan dinners where they can discuss end-of-life issues, suggesting reading, audio, and video materials. Kortes-Miller co-organizes an event called Die-alogues, which hosts speakers and small-group discussions on topics like bucket lists, the use of social media to acknowledge death and dying, and animal companion death.
Popularized in a tweet by Caitlin Doughty, author of Smoke Gets in Your Eyes: And Other Lessons from the Crematory, death positivity is inspired by sex positivity, especially in its emphasis on choice. It advocates supporting people regardless of how they choose to die, whether it involves a green burial or aggressive medical treatments, explains Jillian Tullis, an associate professor at the University of San Diego whose research focuses on communicating about death in end-of-life settings. Creating space for the ways marginalized communities navigate death is another important part of death positivity — for instance, considering how much harder conversations about end-of life care might be for Black and Brown people, who have historically receivedworse healthcare than their white counterparts, Tullis says.
Millennials, ironically, seem especially interested in death positivity. (Doughty, for instance, is in her 30s.) Kortes-Miller notes that many young people have shared stories with her about family members who didn’t know how to deal with an aspect of a grandparent’s death, because no one talked about it. “They want to do more than the generation before,” she tells Mic. Tullis adds that many of her students have begun grappling with their mortality in the face of the climate crisis.
Death positivity sees normalizing death as crucial to wellness. Besides reducing anxiety around death, “it influences how we choose to live,” Tullis says. “When you have death and mortality as a guiding light, so to speak, it can help you understand what types of things are really important”— whether family, good food, or grand adventures — so we can prioritize them.
It can also help us prioritize who we spend our time with and how we spend it, and tease apart what’s really worth stressing over. Indeed, fully recognizing that life is finite can be freeing, Tullis says. She adds that talking about death also helps us make sense of it when it does touch our lives — and can better equip us to help others in our community make sense of it when it touches theirs, Kortes-Miller says.
By normalizing death, we can also begin learning more about what it’s like and talking to our loved ones about what we expect from them in the process, and vice-versa, Kortes-Miller says. This way, once we reach that point and can’t speak for ourselves, our loved ones can make important decisions — such as whether to pursue aggressive treatment or how to dispose of our bodies — based on what we actually want, not what they think we want, and we can do the same for them. “Nobody likes to think about dying and being sick,” Kortes-Miller says. But discussing these topics, however painful and difficult, can in fact be “a gift to the people we love.”
If you think death positivity could help you live your best life, here’s how to start embracing some of its tenets:
Take time to reflect
Figuring out your dying wishes may seem scary and depressing, but asking yourself the two questions Kortes-Miller suggests could help you ease into it: 1) What would you be willing to sacrifice in terms of quality of life for quantity of life? and 2) What are your non-negotiables — the important things about how you live now that you wouldn’t be willing to give up? Delicious food? Your memory? Your independence?
Start having conversations with the people closest to you
While self-reflection is important, the main goal of death positivity is to normalize death by having conversations about it, Kortes-Miller says. She suggests swapping stories about death with a good friend or partner. You could start by talking about the first time you learned about death and the message it conveyed to you. How do you want to use, and even disrupt, that message?
If that feels uncomfortable, starting with someone else’s story might be easier. A TV episode or a case you hear about on the news, like that of Brittany Maynard, who chose to end her life in 2014 after being diagnosed with terminal brain cancer, could act as a springboard, Tullis says.
Add some death-positive books to your reading list. Kortes-Miller suggests Atul Gawande’s Being Mortal: Medicine and What Matters in the End and Katherine Mannix’s With the End in Mind: Dying, Death, and Wisdom in an Age of Denial.
Attend a death positive event, or host your own
Check out a Death Cafe or other event in your area that encourages conversations about death. And just because it’s death-focused doesn’t necessarily mean the vibe will be all doom and gloom. Death Cafes, for instance, “often have cake and interesting people,” Tullis says, and Kortes-Millers notes that Die-algoues events are often abuzz with conversation and laughter.
You could also host your own death party. Some of Tullis’s friends get together to play Morbid Curiosity, a board game that features trivia and conversation cards about, well, death. One card, for instance, asks players, “If you could come back as a ghost, who would you haunt? What are the rules to haunting?” “You don’t’ have to go out and plan your funeral if you’re not there yet, but you can do little things that are fun and a little bit enjoyable,” Tullis says. In the end, death may really be only as scary as we make it out to be.
Each semester, a new classroom is filled with inquisitive students intrigued to uncover the perplexities behind the taboo topic of death. Taught by Chapman sociology professor Bernard McGrane, the “Sociology of Death” course takes students on an enlightening journey to confront the reality of mortality.
It takes a conscious effort to confront the idea of your life ending, McGrane said. On some level, every human being knows that they are going to die; but some others refuse to believe that death will happen to them.
“There’s a quote by Woody Allen that says, ‘I’m not afraid of death; I just don’t want to be there when it happens.’ That encapsulates Western attitudes toward death,” McGrane said. “Out of sight, out of mind; it’s not going to happen to me.”
McGrane’s interest in teaching “Sociology of Death” stemmed from his earliest experiences with Buddhist teachings, as death and impermanence is a component of Tibetan Buddhism.
“I had an interest in Eastern philosophy and meditative ways. I started connecting with it very early on – philosophically and personally – in terms of my own practices and spirituality,” he said. “Through readings, I discovered so many different avenues on the history of death and dying and how radically that’s changed over the years. Through all of this, it came together as a course.”
In the McGrane’s course, one specific assignment seems to stand out to students most – the task of visiting a funeral home and planning one’s own funeral. Students began to organize their own funeral in detail – from finances to whether they would prefer a coffin burial or cremation. McGrane told The Panther that this investigative experience gives students access to the funeral industry, the state laws and the practical skills of arranging a funeral.
One of the funeral homes in close proximity to Chapman that students visited for their funeral home assignment is the Shannon Family Mortuary on East Maple Avenue in Orange. The Shannon family declined to comment
“I’m not always the most outgoing. To go and talk to a stranger about death was difficult,” said Andreas Ter-Borch, a senior sociology major. “But I didn’t expect the funeral industry to be a money-making machine. Not everyone can afford to give their loved ones the funeral they think they deserve.”
Although Ter-Borch doesn’t always feel comfortable talking about death, the course has helped him recognize the significance in doing so. He didn’t expect to become so emotionally invested in the class, but McGrane’s required journal writing became therapeutic for him, helping him understand that humans can’t fully enjoy the quality of life without first accepting death.
“We strive for longevity, even if the quality of life is bad,” Ter-Borch said. “We are way too focused on avoiding death rather than improving the quality of our lives and living our lives to the fullest.”
McGrane’s first taught the course in 1980 at Colby College in Maine, when it was titled “The Sociology of Death and Medicine.” In 1983, McGrane moved to California where he began teaching at the University of California, Los Angeles, renaming the course “Sociology of Death,” which he eventually transferred to Chapman. “When things weren’t as legally restrictive as they are now, I would take my students to watch autopsies,” McGrane said.
“I wanted them to be exposed to dead bodies.” Lily Florczak, a senior screen acting major and current student in this course, said that if observing autopsies was a part of McGrane’s curriculum today, she would feel uncomfortable, but ready for the exposure.
“His class prepares you for something like this,” Florczak said. “But I do think it would only be a good idea if people had the choice to opt out.”
Florczak enrolled in the class because she didn’t know how to handle death well and thought it would help her own growth.
“I have learned that grief is not a handbook or a series of rules that you follow and then you’re OK,” Florczak said. “It’s different and unique and intimate for everyone. Understanding that death is a part of life is a personal process one must go through in order to heal.”
For the past few months, when appropriate, I have asked some of my patients what it feels like to die. My reason for this is because I want to provide better care; I want to truly tap into all the ways that we can relieve someone of the struggles they experience when they are dying. I found it interesting that most people said that usually, no one asks that particular question. I explained my reason for wanting to know, and almost everyone had something to say.
I think we always assume pain is in the forefront, and that has proven to be true but it goes deeper than that. With the pain, comes the fear of never being free of the pain. The emotional exhaustion from having to constantly try something new, or increasing something that doesn’t work, or worse, not having it even touch the pain at all, is a heavy weight to bear. There is a very common thread amongst people who are experiencing pain; no one wants to die feeling that way, or worse, living that way until they die. While medications are effective most of the time, usually they just knock the patient out for an hour or two, and then are woken up by their pain once the medication wears off. Each person told me they do not want to die that way. One person said to me, “every day I lay here in this bed and I don’t move; not because I am paralyzed physically, but because I am paralyzed by the fear of making my pain worse if I move. Every time someone comes in here to reposition me, or check on me, I prepare myself for pain”. This resonated huge for me.
Death is hard enough, but death with pain is a constant debilitating struggle. I certainly can’t speak for anyone else, and I am in no position to tell you what to do, but after hearing this over and over again, and as a patient advocate, I can assure you anyone nearing the end of life, struggling with severe pain does not want to hold on and wait it out. They certainly do not want to feel this way until they take their last breath. My advice is if given the opportunity to ask them what they want or need, and they have a voice, listen to them and respect their wishes. It may not be something you approve of or agree with, but this isn’t about you. Imagine if you were able to be the difference between a painful or a peaceful death.
Emotional pain is a runner up to physical pain for those at the end of life. You would be surprised at how many people are actually not afraid to die. They are not as focused on the death itself, but more often, the amount of time it takes to get there. One person said to me, “every morning I wake up, I want to cry because I am still here”. Lying in a bed, day after day, knowing the inevitable is around the corner can be agonizing. I broke down and cried when a patient said to me, “I just want to die and I can’t. I am given a death sentence, of which I can no longer fight, but I am forced to just sit here and wait. There is no dignity in death. I have to die on someone else’s terms”. How do you respond to that?
They struggle with losing their independence, and having someone else clean and change them. This was repeated often. Having someone else move you from side to side, rolling you over as your head is pressing into the side rail, not even realizing that your shoulder is crunched down under you so hard you ache for hours after. And then, once you are cleaned up, re-positioned how someone else thinks you should be, you just lie there and cry inside. As death nears, they can’t help but think about their death; what it will be like, when it will happen and why the hell it isn’t happening sooner.
Meanwhile on the other side of this, is the family and loved ones crying at your bedside begging you not to leave them. So with everything else you are experiencing, guilt comes along and rears its ugly head. One person said to me, “I feel like I have let them down”. That is a heavy responsibility to carry. It is easy for us to think about how their death will effect us; but what most of us don’t think about, is how our feelings of their impending death effects them. So many have said to me how badly they wish they could tell their loved ones this isn’t their first choice, they didn’t want to get sick, they don’t want to die. They want to say they are sorry; sorry for getting sick, sorry for this long drawn out process, and most of all, sorry for the pain it causes everyone around them. Here they are dying and they want to apologize.
While I heard about the physical and emotional pain, I also heard the lovely things as well. Even people who were usually private and quiet and preferred to be left alone, welcomed the bedside visitors, the memories shared, the music played and the heartfelt goodbyes. They want to know how much they are loved, they want to know they made a contribution, and even though it is a hard pill to swallow, they want to know they will be missed. We think a lot about our own grief, and what saying goodbye to someone will feel like, but they have that too, in a very big way.
Some of the most beautiful conversations I have had are about the visions people see, the people standing next to the bed, or walking by a door or window… the ones that we can’t see. People tend to think they are delirious and afraid, but that is not what they have shared with me. In fact most feel safe and protected knowing there is someone watching over them, and perhaps waiting to guide them safely to wherever it is they will be going. I can’t help but wonder if it is our own fear that we are projecting onto them. What if instead, we asked about who or what they saw, encouraging them to trust us with their visions.
I cringe every time I see someone moving a patient without telling them first; repositioning them every two hours because that is what they were taught, not once thinking if this is truly in their best interest and certainly not thinking of the pain or discomfort this might cause. Whether or not they can verbalize, they should always be treated with kindness and respect. They should be offered a gentle warning before being touched, moved, or given medication. Lights should not be suddenly tuned on above their heads, after lying in a darkened room, covers should not be piled on heavily or quickly removed, and they definitely should NOT be lying naked for all to see when being changed. And please, if someone is actively dying, put the blood pressure cuff down, why are you taking their blood pressure? This irritates me like you can’t believe. Most vital signs can be assessed visually or by touch; at the end of life, please don’t put them through those tests. So many things we could do differently if we took the time to ask them what they need, or if we simply thought about their needs.
I remember awhile back, I walked in to visit a patient and said, “how are you doing today?” which seemed like a valid question. I had no idea the effect that question would have on someone until I received his response. “How do you think I feel, I am dying”. I never asked that question again. I start each visit now with, “it is really nice to see you”.
As I have said in many of my previous blogs, this is their experience not ours. The fact that we assume what they need, without asking, even when they have a voice, is selfish. As a society we have grown disrespectful on many levels and I am reminded of this most of all when talking to people who are at the end of their life. These are human beings who still have a voice and I think it is our responsibility to hear them. If we listen, if we truly take the time to ask them what they need, imagine the care we can provide not only to them, but also to those who do not have a voice, who can’t verbalize their needs. I only spoke to a handful of patients, so my findings do not speak on a global level, but I do think it is a good start to providing better care.
What does it feel like to die? It is emotional, it can be painful, it is usually sad, and it can sometimes be incredibly lonely. People do not die the same way and while there are similarities and common symptoms, each is still very unique. Therefore we need to take the time to listen, to observe, and assess what each person is experiencing, and what they might need when they are going through the dying process. We cannot treat everyone the same way. The only consistencies we should have when caring for someone at the end of their life, is that it is always done with kindness, compassion, respect, and honesty.
Herodotus, in the 5th century B.C., recorded an account of a race of people in northern Africa who, according to local lore, never seemed to age. Their secret, he wrote, was a fountain of youth in which they would bathe, emerging with “their flesh all glossy and sleek.” Legend has it that two millennia later, Spanish explorers searched for a similar restorative fountain off the coast of Florida.
We are still searching for the fountain of youth today. Instead of a fountain, however, it is a medical breakthrough, and instead of youth, we seek “transhumanism,” the secret to solving the problem of death by transcending ordinary physical and mental limitations. Many people believe this is possible. Observing a doubling of the average life span over the past century or so through science, people ask why another doubling is not possible. And if it is, whether there might be some “escape velocity” that could definitively end the aging of our cells while we also cure deadly diseases
Lest you think this concept is limited to snake-oil salesmen and science-fiction writers, the idea that aging is not inevitable is now in the mainstream of modern medical research at major institutions around the world. The journal Nature dubbed research from the University of California at Los Angeles a “hint that the body’s ‘biological age’ can be reversed.” According to reporting by Scientific American on research at the Salk Institute for Biological Studies: “Aging Is Reversible — at Least in Human Cells and Live Mice.”
The promise to end old age is exciting and mind-boggling, of course. But it raises a question: Why would we want to defeat old age and its lethal result? After all, as writer Susan Ertz wryly observed in her 1943 novel “Anger in the Sky,” “Millions long for immortality who don’t know what to do with themselves on a rainy Sunday afternoon.
Your boring Sundays notwithstanding, perhaps you think it’s obvious that getting old and dying are bad. “The idea of death, the fear of it, haunts the human animal like nothing else,” anthropologist Ernest Becker wrote in his 1973 book, “The Denial of Death.” Why else would we willingly put up with a medical system that seemingly will spend any sum to keep us alive for a few extra days or weeks?
It is strange that the most ordinary fact of life — its ending — would provoke such terror. Some chalk it up to what Cambridge University philosopher Stephen Cave calls the “mortality paradox” in his excellent 2012 book, “Immortality: The Quest to Live Forever and How It Drives Civilization.” While death is inevitable, it also seems impossible insofar as we cannot conceive of not existing. This creates an unresolvable, unbearable cognitive dissonance. Some have tried to resolve it with logic, such as the ancient Greek philosopher Epicurus’ observation that “death, the most terrifying of ills, is nothing to us, since so long as we exist, death is not with us; but when death comes, then we do not exist.”
Transhumanism responds, “Whatever, let’s just avoid that whole second scenario.”
Another argument for transhumanism is less philosophical and more humanitarian. We think avoidable deaths are a tragedy, don’t we? Well, if most of the 27 million annual worldwide deaths of people age 70 and over could be somehow avoided, wouldn’t that put them in the category of “tragedy”? Shouldn’t we fight like crazy to avoid them?
While the transhumanism movement is making progress, it isn’t without its skeptics. Some don’t think it will ever work the way we want it to, because it asks science to turn back a natural process of aging that has an uncountable number of manifestations. Critics of anti-aging research envision any number of dystopian futures, in which we defeat many of the causes of death before very old age, leaving only the most ghastly and intractable — but not directly lethal — maladies.
Imagine making it possible to cure or treat most communicable diseases and many conditions and cancers that were once a death sentence, but leaving the worst sort of dementias to ravage our brains and torment our loved ones. Wait, we don’t just have to imagine that, do we? As Cave puts it, we are “not so much living longer as dying slower.” Will transhumanism inadvertently bring us more of this?
No one can say conclusively where the transhumanist movement will go, or whether it will ultimately change the conception of living and dying in the coming decades. One way or another, however, I think we could productively use a parallel movement to transhumanism: one that seeks to transcend our limited understanding and acceptance of death, and the fact that without the reality of life’s absence, we cannot understand life in the first place. We might call this movement “transmortalism.”
Of course, a huge amount of work to understand death has gone on over the millennia and starts with the straightforward observation that confronting the reality of death is the best way to strip it of its terror. An example is maranasati, the Buddhist practice of meditating on the prospect of one’s own corpse in various states of decomposition. “This body, too,” the monks recite, “such is its nature, such is its future, such its unavoidable fate.”
Frightening? Far from it. Such exposure provokes what psychologists call “desensitization,” in which repeated contact makes something previously frightening or foreign seem quite ordinary. Think of the fear of death like a simple phobia. If you are afraid of heights, the solution might be, little by little, to look over the edge. As the 16th-century French essayist Michel de Montaigne wrote of death, “Let us disarm him of his novelty and strangeness, let us converse and be familiar with him, and have nothing so frequent in our thoughts as death.”
Perhaps while we wait for the promises of transhumanism, we should hedge our bets with a bit of transmortalism, which has the side benefit of costing us no money. Who knows? Maybe the solution to the problem of death comes not by pushing it further away but, ironically, by bringing it much closer.