“When my dad died, his schizophrenia was so severe that my brothers and I had stopped taking his calls. The truth is, by then all three of us wished he were dead. We didn’t say it out loud, but we all knew we were feeling it,” I said, and looked nervously across the table at my 20-year-old daughter, Zelly. She, my wife, Amie, and I had organized a Death Café at Spider House Café in Austin, Texas. Seventeen of us sat at four tables outside under the trees on a warm autumn Sunday evening, eating doughnuts and talking about our experiences with death and loss.
“He’d lost everything by then, and I know we actually wanted him to kill himself. What was keeping him going? He had nothing left to live for. But when he called collect from the mental ward of a hospital for indigents in Miami, I answered, and he told me, ‘Clancy, unless you send me 50 bucks for a bus ticket, I’m going to die in here.’ And I said, ‘Dad, I think you’re in the right place for now.’”
I looked back at my daughter and said, trying to lighten the mood: “Don’t ever do that to me. You send me the money.” Everybody laughed.
“But I didn’t wire my father the 50 bucks. It wasn’t even a week later that the doctor called, and I knew before he told me that my dad was dead. And when I told my older brother, he cried in my arms in the back of our jewelry store, but after that none of the three of us talked about it again. It was like he vanished.”
Megan Mooney, 31, a bright-eyed, gentle, effervescent person—who describes herself as “obsessed with death: I’ve been going to cemeteries for fun since I was a kid”—spoke up. “When someone you love dies, people avoid you. Including members of your own family.”
Megan has held more than 20 Death Cafés in the past two years and is one of the leaders of the movement in the United States. She’d driven down from Missouri to Texas to help us with our Death Café. “Even brothers and sisters shut down. No one wants to say the word death. It’s like saying death makes it contagious. And if they will talk about it with you, they just want you to reassure them. I remember a woman I knew whose daughter had committed suicide. She told me: ‘Everyone wants me to pretend I’m OK. They want me to keep saying I’m OK. But I’m not OK.’ I think that’s one thing we can say to people who are dealing with death: ‘You don’t have to tell me you’re OK.’”
The Death Café movement is booming. The first Death Café was held in London in 2011 and since then more than 2,500 Cafés have been held in more than 36 countries around the world. At a Death Café in St. Joseph, Missouri, I met Megan Mooney’s father, Bill.
“I wouldn’t come to these Death Cafés of my daughter’s for a long time,” Bill told me. He’s in his late sixties and has those Midwestern craggy good looks. “I wouldn’t even talk about death. But now I come to every one. I’ve written out all the songs I want to have played at my funeral.”
Then there was Susan, an ob-gyn nurse in her mid-sixties who, in the past few years, had helped her sister, her mother, and her father die. I’d met Susan at a Death Café at Coffee Girls’ in Kansas City two weeks before.
“No one in my family helped me. I felt entirely alone,” Susan said. “Think about when you have a baby. All of the classes, the books, support. When my family members started to die—it felt like they were all dying at the same time—I didn’t know how to handle it. You know the book What to Expect When You’re Expecting? I felt like there should be a class. What to expect when you’re dying. Or when someone you love is dying.”
Death Café isn’t grief therapy, or “How to Write an Advance Directive,” or part of the “Dying with Dignity” movement, or a bunch of morbid Goth kids. The first Death Café I attended had a typical group of attendees: 20 or 25 middle-class adults, both single and in couples, ranging in age from their early twenties to their late seventies or early eighties. Death Café groups tend to look like the people you see at a public lecture at a university. Older rather than younger, more women than men: women, I’ve learned from Death Café, are more open to talking about death than men.
Here is my simple, honest, guilty motivation: over the past 30 years I have repeatedly tried and failed to commit suicide.
The point is to give people a place where they can talk freely and openly about death in a society—or a world—that would really rather avoid the subject. “One’s own death is beyond imagining,” Freud wrote, and in ordinary life that seems to hold up; at Death Café, by contrast, people collectively confront the losses they’ve suffered through death and also try to conceive of their own mortality.
The concept of the Death Café was inspired by and modeled on the work of Bernard Crettaz, a Swiss sociologist who argues that today we exist in a collective “tyranny of secrecy” when it comes to death, and who held the first Café mortel in France in 2004. He writes: “I am never so in tune with the truth as during one of these soirées. And I have the impression that the assembled company is born into authenticity for a moment, thanks to death” (Cafés mortels, 2010). Crettaz just held his final Café in Paris on Halloween of 2014—he is approaching 80 and had decided to let others take over the movement. “After hearing so much about death from others, I was no longer thinking about my own death,” he said.
I am a Buddhist and a philosophy professor who specializes in existentialism, so I am interested in death. But that was not my real reason for attending Death Café—which was, in fact, only a part of the investigation into death I have been making during the past few years. Here is my simple, honest, guilty motivation: over the past 30 years I have repeatedly tried and failed to commit suicide. Although my first attempt was at age 16, suicide fantasies are among my earliest memories, and as an adult I’ve tried to kill myself repeatedly. But the fact that I keep failing makes me suspect that, like Keats, “I have been half in love with easeful death.” And I can’t get past the worry that I am willing to try to kill myself because I have not accepted the fact that death is real. (I should add that I am speaking only for myself here—the possible reasons for suicide are complex and very many.) I’m both terrified of death and not nearly as afraid of it as I should be. In a cowardly way, I take my life for granted.
Whether it’s the Buddha speaking, Tolstoy, or an existentialist like Soren Kierkegaard or Martin Heidegger, we remember the idea: to be authentically human—to really understand ourselves as individuals and to appreciate how precious our particular lives are—we have to force ourselves to think about death. To understand who you are is to recognize that there will also not-be-you. This in turn forces you to reflect on the fact that you are confronted with a vast and bewildering array of choices about what you want to do with yourself, how, and when. You realize, uncomfortably, that you are free. The acute consciousness of your freedom is intimately tied to your awareness of the fact that every minute of every day you are quite literally running toward your own death. We won’t always have all these choices.
The opposite, much more common case, is the understanding of death as something that only happens to others. Death happens to everyone except you. Furthermore, the way we avoid talking about dying or discuss it purely in abstract terms interferes with our ability to recognize that it is an essential aspect of making sense of our own lives. We tranquilize ourselves in the way we talk about death; we often even tell the dying lies—lies they generally don’t want to hear—about dying in order to make ourselves feel more comfortable about avoiding the subject. This is, of course, also a sophisticated way of deceiving ourselves about the fact of our own imminent death; and in my own case, of wanting (and not wanting) to die.
I attended a lot of Death Cafés, trying to convince myself that I, too, was going to die; I felt that, paradoxically, if I could really understand my own mortality I might feel less inclined to take my own life. But I still felt like Max von Sydow in The Seventh Seal, playing chess with Death to buy time. I am ashamed to admit it, but I believed that, somehow, my suicide attempts were part of the game.
I remembered something Bergman said about The Seventh Seal: “My fear of death—this infantile fixation of mine—was, at that moment, overwhelming. I felt myself in contact with death day and night, and my fear was tremendous.” After he completed the movie, he said, his fear went away. I had, I felt, the opposite problem: I wasn’t afraid enough. Playtime is over. So I went to the charnel grounds, to try to convince myself of the reality of death.
I had cut a four-inch square into the skin on the back of the hand of a dead woman of indiscernible race—she was concrete gray—and I tugged at it with a pair of tweezers while I used the scalpel to separate the skin from the fat. The skin had a tendency to start to tear if I pulled too hard, so I had to make gentle slices beneath in order to peel it away. Her thoracic cavity was open, and I had already held her heart and her lung, fingered her aorta—which was crunchy, a sign of bad diet—and her liver. I was nauseated and dizzy.
Her chin was round and her eyes were bluish-white and I had the crazy impulse to kiss her.
The dead woman had been shaven, but she still had traces of her hair and her pubic hair. She was, I guessed, in her sixties. Her chin was round and her eyes were bluish-white and I had the crazy impulse to kiss her. She had a large cardboard tag hanging from her ear: NB-14-514. She was still lying mostly in the thick clear vinyl bag with a knot tied at one end that they had delivered her in, and there was an orange-and-black rope under her body that would have been tied beneath her arms to hoist and carry her.
“It’s really a privileged club,” Dr. Rinaldi said. “What we’re doing is so socially unacceptable. But when I teach it, I explain to my students that it’s the first patient’s body you’re entrusted with.”
The entire body was there, and we were dissecting it. It was just the three of us: me, Dr. Caroline Rinaldi, a young, enthusiastic redheaded professor of medicine, and the old dead woman in the University of Missouri–Kansas City cadaver lab. This was the closest I’d ever been to a dead body. Before this, I suppose, it had been one made up like a wax figure for a funeral in a casket, or the wrapped bodies I’d seen being carried to funeral pyres on the banks of the Ganges. Or when I held my father’s ashes in the box they had mailed to me from the crematorium in Florida. But this was a real dead person I was touching.
“When my mom died,” Dr. Renaldi said, while I separated yellow tissue with tweezers, “I understood the concept of the wake. Leaving the body out—I get that now. You went out and visited it for a few days—even if it was a child—and you knew when it was time to bury it, because the body was changing—you could see that she wasn’t there anymore. When my own mother died, I wasn’t ready to let her go. We are so sterile. We aren’t experiencing these things that will allow us to let go.
“Here, try these,” she said, and gave me a pair of scissors.
I held the dead woman’s hand as I used the small sewing-sized scissors to separate her veins and tendons from the connective tissue. I pushed the point of the closed scissors into the tissue and then opened them to pull the flesh away. Her nails were long and her hand felt like, well, a hand—not like a corpse’s hand, though her temperature was neutral.
“The hand is one of the most difficult things to dissect,” Dr. Rinaldi warned me, with a gentle expression in her face. “It’s very intimate, very human.”
The dead woman didn’t smell of anything. But the cadaver lab had just been repainted; it was a pale blue-gray, and the smell of paint was strong. Water dripped. I was swallowing too often, and Dr. Rinaldi checked my eyes. “Are you OK? We can stop.”
“No, I’m OK,” I lied. I continued to work on the flexor tendon. I looked at the dead woman’s quiet face again, her soft round chin, her neck, her flat breasts. She’d had breast implants—“They’re just now starting to come in that way,” Dr. Rinaldi said—and the small vinyl bags lay there next to her breasts. When I changed instruments, I rested my scalpel or my scissors on her belly.
“At the cadaver lab when I was a grad student, there was only one custodian who would go in there. They don’t like to come in here either,” she said. “I remember one guy told me, ‘I’m the only one who will go in there. Because I was in Vietnam.’ I always thought that was a bit odd.”
I kept looking at the huge opening in the woman’s diaphragm where her heart and kidneys rested. Her stomach had been removed. While I worked with the scalpel again—trying to pretend that I wasn’t about to pass out—I told Caroline the story of Dan Nicolas, whom I’d met a few days before at an embalming theory class in the Mortuary Science program at Kansas City Community College.
“He was a Marine, and one day during a training accident a bunch of his buddies were blown up. ‘We had to go pick up the body parts,’ Dan told me. ‘A lot of the guys had a fear of the dead bodies, but I’ve never had that. I think being an embalmer, a funeral director, is a way to help a lot of people that most folks just can’t do. That’s why I decided to become an embalmer. Plus it’s steady work,’ he said, and laughed.”
“It’s steady work all right,” Dr. Rinaldi told me. “It’s the same in med school teaching. Guaranteed job. Most people won’t teach Gross Anatomy, either.
“There’s a dream a friend of mine had repeatedly,” she continued, “and I’ve had it too. You’re in the middle of a dissection with your whole class there, and suddenly the cadaver sits up. It’s alive. And you don’t know if you should kill it or what to do next.”
I tugged at the tendon with the tweezers.
“There, now you’ve got it,” she said. “Good work. You’ve got a second career as a surgeon if you want one. Have you had enough, or . . . ?” I nodded. I’d had enough.
When we left the lab a painter was talking on his cell phone outside the door. “There’s a cadaver in there,” Dr. Rinaldi warned him, and he spun on his heel and walked quickly away, down the hall.
Once I was outside, I lay down on my back in the grass with the sun on my skin. I felt like I owed an apology to the dead woman inside, and also that she had told me something I had to remember. The voice I had in my head was saying: “It’s not so bad to be dead. It’s quiet. It’s over.”
I was lying in the grass, a little cold in the sun, listening to the traffic, worrying about my usual worries: the kids, partner, money, career. It didn’t matter whether or not I was enjoying the worrying. It didn’t matter how real the worries were—or how unreal. It didn’t matter if I was checking my email or reading a novel or making love to my wife. Because the woman was back inside there, dead.
It was Halloween, and Megan Mooney and I were going to visit one of her hospice patients, a 91-year-old woman who understood that she could die any day now.
“Maybe Death Café is like hospice for the living,” I said. Megan and I were sitting together at the busy offices of Three Rivers Hospice in Platte City, Missouri.
“We need help to realize that we’re actually going to die,” she said. “I see that as part of my job.”
It was a long drive. I followed her far out into the Missouri countryside, until we turned onto a gravel road and then pulled up to a giant red barn and a pretty two-story yellow farmhouse; beside it stood a little house that had been built by the dying woman’s son so that she could live right next door. It had three rooms: a kitchen/sitting area, a large bathroom outfitted like the kind you see in a hospital, and the bedroom, where L.H. (hospice required anonymity for the interview) spent, as she said, “all my time—except when I’m walking to the bathroom.”
She had a large chair that electrically reclined into a bed, and she was wrapped in blankets. A few feet from her chair, a 70-inch television on the wall played a Western. Debbie, L.H.’s hospice social worker—a cheerful, direct woman in her late forties, with sandy, shoulder-length hair and intelligent eyes—told L.H. that it was Halloween and explained that we had come for “a visit.”
“I love visitors,” L.H. said. “I don’t get many visitors.”
“But your son takes good care of you,” Debbie said. She spoke in a loud, saccharine voice, like the voice people often use with small children.
“Yes, he does,” L.H. said. I thought about her son, and what it must be like for him, walking next door from his own house to the little house he’d built for his mother to die in.
She’s about twice my age, I thought. If I’m lucky, when I live the second half of my life, this is where I’ll wind up. It was an unacceptable thought. The loneliness of this woman in her two rooms with the shades pulled down and the TV going was oppressive, alienating, like a tomb. I wanted to be able to talk to her about something that mattered, but I was a stranger to her. I wanted to ask her about dying, but I was afraid to bring it up.
Megan pointed to a large china cabinet with a small box in a wool case on one shelf. “What’s that?” she asked.
“That’s a tuna can,” L.H. laughed. “When I was a girl, 3 or 4, I used to collect bugs in that. Then one day I cut myself, so my mother knitted that crochet case. You should have seen their faces when I brought that tuna can to the dinner table and showed them all the bugs I’d found. I collected worms, doodlebugs, everything.”
She struggled out of bed and used her walker to show us her bathroom.
“They give me water pills, so this is what I do. I watch TV and make trips back and forth to the bathroom.”
“Do you leave the TV on when you’re asleep?” I asked.
“It doesn’t bother me,” she said. “I’m used to it.”
After we left and were standing in the gravel parking lot, I asked Megan and Debbie why none of the three of us had spoken to her about dying—after all, that was really the point of our visit.
“You did the right thing. It wouldn’t be appropriate,” Debbie said. “My job is just to assure them that they’re loved.”
I first learned about hospice when my stepfather died. He was at home in a bed—a bed much like L.H.’s—that had been set up in the family room. The house, which had always seemed so happy and luminous to me, was dark, like an animal’s lair, and smelled medicinal. There were only the six of us: my two brothers; the hospice nurse; Mom, who was making something for us to eat; me; and Dad, who was dying of leukemia. (He was my mother’s second husband, but we called him Dad out of affection and respect.) I stood close to him, upset by my stepfather’s handsome square-jawed face, his skin now gray-green and puddingy from the chemo. He was characteristically stoic, but suddenly something changed in his face, he was vulnerable, and he said: “I just wanted ten more years.”
It still sends electricity up my back. “I just wanted ten more years.” Why not ask for twenty, Dad? Couldn’t you be more modest, lie, and say you only needed another year or two? He told me the truth. He wanted ten more years.
“Get some rest, Dad,” I said. He replied bitterly: “Rest? I’m about to get plenty of that.” I didn’t know what to say.
Dr. Brian Carter is a neonatologist and bioethicist who teaches and practices at Children’s Mercy Hospital in Kansas City. He’s a handsome bearded man in his early fifties with a muscular frame and a gentle, wise manner. He had his sleeves rolled up as we walked through the NICU, looking at all of the tiny babies on their life-support systems.
“I really understood palliative care and end-of-life medicine when my own father died,” he told me. “That was a transformative moment for me. All of the academic stuff I’d learned suddenly became very real, and I understood that we needed help from our physician with the personal dimensions of death.” As we talked, various residents came up to him and asked him for advice about the babies.
“The weight is down 25 grams on M.Z.,” said a young Indian fellow with a slightly worried expression.
“The baby looks great,” Brian replied. “If nothing else changes we’ll go ahead and let him go home on Friday. Mom’s a health- care provider, so she’s comfortable with the equipment.”
Every year between 50 and 70 babies die in this ward. It’s a cheery, sunlit place, but most of the babies are connected to one or more machines. As tiny and fragile as they were, the babies looked strong and comfortable to me, even confident. It wasn’t what I had been expecting.
“I still remember my first three kids who died,” said Brian. “They were 6, 17, and 2 years old. I had to break the news to their parents, and I thought about each of them again when my dad died. I understood then, personally, how incredibly tough this was. If it ever gets easy, you need to change to a different line of work,” he said.
I noticed that Brian wasn’t afraid to use the word “died.” So many people I’d talked to in the past months insisted on “passed” or “moved on” or some other euphemism.
He stopped to check on a woman who was nursing her baby. The baby looked as though she weighed about five pounds. She looked warm and happy, nestled up against her mother. “She’ll be ready to go home in less than a month,” Brian said.
“So often, when a child is dying, the family feels trapped by the clinical situation,” he continued. “They are drowning in information. They want to tell you, Look, I know my child is dying, so if you’re just going to tell me that in some new way, save your breath. How can we get some good news? How do we deal with these symptoms? How do we make his death easier? How do I parent a child in the hospital who is dying? They want to talk. The key is to learn how to listen. How to ask questions rather than just hide behind the information you are trained to provide.”
I asked Brian how he actually breaks the news to parents that their children are dying.
“You don’t break the news like a plate. You don’t deliver the news like a pizza. You bear the news. That way you can try, a little bit, to bear the burden with them. They can see that you want to help them carry a bit of the burden. And when they see you really do care, that makes it a little bit easier for them, I think. But whether it’s the parents or the dying kids themselves—when they’re not in the NICU, when they’re older—how you talk to them is everything. Figuring out where they’re at, what they’re ready to talk about, what they’re ready to hear.”
“I can’t think of a more difficult job than telling someone about the death of their child,” I said. I could see how much Brian cared about his patients, and it was almost inconceivable to me that he could come to work every day and face the inevitable reality of another infant dying, week after week.
“That’s one of the hardest things about working in the NICU,” Brian said. “My patients can’t talk. So when one dies, it’s different. It’s harder. It’s hard for our whole team up here. I sometimes think we need to talk to the parents as much as they need to talk to us.
“Back at Vanderbilt I had a mom—just a teenager—who decided to end the treatment for her baby when the surgery didn’t give us the results we needed. She held her baby quietly for about ten minutes after we removed life support, the lines and the tubes, and the baby died in her arms. It was incredibly difficult, but I was grateful to be there, too. To be the one helping her. Talking to her. We talked about the death of her baby together.”
My wife had two sisters who died before she was born. They died in a car fire, in the care of a babysitter. I’ve talked to my mother-in-law about it; she still often cries when she talks about her dead daughters. But she’s also always eager to talk about them when I bring up the subject with her. She’ll tell me stories about them before they died, how it was during their brief time in the hospital, and how her friends reacted after their death. For her, the most frustrating thing was the people who simply couldn’t talk to her, who wanted to pretend—in the many devious and self-deceptive ways we have of pretending about death—that what had happened to her hadn’t happened. She wanted to talk. But everyone was too scared of her.
Look, I know my child is dying, so if you’re just going to tell me that in some new way, save your breath.
Then one day she met a Buddhist who was willing to talk to her, who wasn’t afraid of her. He listened to her story, and then he said: “You really love your little tragedy, don’t you?”
Shortly thereafter, she moved to Colorado to study with Chögyam Trungpa Rinpoche, and she’s been a Buddhist ever since.
I’d visited an embalming theory class where a square-jawed young guy who looked like he’d just come from his fraternity house told me that the first time he’d seen his uncle and his father preparing a body at his family’s funeral home, when he was 9 or 10 years old, the woman’s wig had fallen off and he’d thought her head had gone rolling onto the floor. He was joining the family business. I’d almost passed out while dissecting a cadaver. I’d visited a woman who was dying with two experts in the dying business and discovered that we were all still just as afraid of death as we’d always been.
I’d walked the NICU—the place I’d been most frightened to go—and found unexpectedly, that all those little preemies and newborns so close to both death and life at the very same time somehow reassured me about life. And I’d visited Death Cafés and held my own, and heard about visits from the afterlife, suicide attempts, children who’d found their dead parents, daughters whose fathers wouldn’t talk to them anymore because their mothers had died.
Am I less suicidal? I don’t know. I don’t think I’m more ready for death than I was; I don’t think I’ve become more authentic; I don’t even think, unlike Ingmar Bergman, that my project has helped me overcome my fear of death: in fact, just the opposite. For years, because of my longing to kill myself, I was convinced that I was unafraid of death. Now I can admit to myself that I am very afraid of death—I owe at least that much to the woman whose corpse I cut into. Maybe that’s about as much progress as I’ve made.
In the kid’s movie Antz, when commended for laughing at death, Woody Allen’s character replies: “Actually, I generally just make belittling comments and snicker behind death’s back.” That’s exactly what we all do, if we’re even willing to broach the subject. I think the one thing I might have learned was to say the words: She died. He died. My friend died. My dad died. The words aren’t anything to be afraid of: but silence, when it comes to death, can actually do us harm. Feeling like you want to die, and being afraid to tell other people how you are feeling.
Ask the dying: are you afraid of death? Ask the grieving: how are you dealing with the death? Don’t be afraid to admit that you’re afraid: afraid of talking to the dying person, afraid of talking to the grieving person. Do not go silent into that good night. Ask the suicidal person: why did you try? Then listen. Try a conversation. It’s not easy. Because the little tragedy I love and fear most is my own death, and the more I talk about it, the more real it becomes. Being brave enough to talk about death is a way of confronting it.
For Jon Underwood—a Tibetan Buddhist for many years and now the de facto worldwide leader of the Death Café movement—Death Café is entirely about the power we gain from talking about death.
“People are really weird about death, and they don’t have to be. But in our society it’s become about power,” Underwood told me. “The power of the doctor. Power in hospitals. We do everything we can to disempower the dying. I think we’re experiencing a global shift in our attitude about death, because people are wanting to take that power back. And that’s why Death Café is working. Just talking about death over cake helps people realize that this is something they can think about for themselves.”
Then John said something that has stayed with me, something that is useful to me in thinking about my own little tragedy.
“And I can tell you why people don’t like to talk about it. Death’s horrible.”
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