Taming Death

I recently read a description of a local creek that has changed the way I hear water. Colquitz Creek, named by the First Peoples of the area, translates roughly into “baby crying and crying until it is exhausted and no one is going to comfort it.” There is an inconsolable quality to water that I didn’t recognize until I heard it named.

Prior to 1969 and the publication of On Death and Dying by thanatologist, Elisabeth Kübler-Ross, a great silence prevailed in North America. Death was denied description because it was denied expression. As a society, we bury our dead and yet often refuse to let them die. There have been thousands of sightings of Elvis since his death. At the funeral, his father, Vernon, allegedly acknowledged that the corpse in the coffin did not look like his son. “He’s upstairs,” he told the crowd. One wonders how far upstairs he meant. In a death-denying culture, we vacillate between fear and fascination.

When my brother died, it was as if snow were falling all over the world; there is no silence as perfect as that of the shell-shocked bereaved trying to be brave. Kübler-Ross gave death and dying a language. She developed a series of seminars using interviews with terminal patients in which she encouraged physicians and others not to shy away from the sick but to get closer to them.

On the prairies, in winter, farmers have been known to tie a rope between the house and barn so they don’t get lost in a blinding snowstorm. Kübler-Ross’s model served as a kind of rope for the times when it seemed all landmarks were gone. She brought the subject out of the privacy of medical schools and delivered it to the streets. Death was out of the proverbial closet, so to speak. Her five stages of grief—denial, anger, bargaining, depression, and acceptance—provided new ways to speak and think about loss, for the dying and for the bereaved. One of the misconceptions about this model is that one needs to reach acceptance in order to have a good death. In actual clinical practice, psychologist Therese Rando notes that true acceptance, as articulated by Kübler-Ross, is seldom witnessed; rather, it appears that as patients get closer to death, the realization of the inevitable often provides a sense that “one’s time has come,” which, in some cases, allows the patient to make peace with the fact that there is nothing else to do. The line between acceptance and surrender is a very fine one. “I may not like this,” one patient told me, “but the boat’s leaving and I’m jumping on.”

Not long ago, I met a family whose mother was dying of heart failure. Emotions were changing in the room like a spring day with its hail one minute and sun the next. One daughter, at peace with her mother’s dying in the morning, was bargaining with her to eat in order to regain her strength by early afternoon. A son who refused to accept that death was imminent, who had been in denial since his mother was admitted to the hospital as a palliative patient, was the only one who answered his mother directly when she asked if she was dying. “Yes, Mom,” he said, “you are in the hospital and you are dying.” She responded by thanking him. “I’ll miss you,” she said. “I’ll miss everything.” She then closed her eyes and said, “Well, I’d better figure out how to do this then.”

There is no road map for the dying or the bereaved. No linear path. There are stages that go back and forth. Moments of grace, moments of anguish. Grief is a mess. Studies in medical anthropology have shown that death is defined as “good” if there is awareness, acceptance, and preparation and a peaceful, dignified dying. We tame death with our ideas about it.

Historically, the good death, as established by religious doctrine, was one that was fully and consciously prepared for. In the Middle Ages, the dying organized their own bedside ceremonies where friends and family gathered to eat, drink, play games, and pray. The dying person expressed sorrow that life was coming to an end and spoke openly about his or her life, seeking forgiveness or forgiving others. The emphasis was on the soul’s future. French historian Philippe Ariès referred to these ceremonies as “tame deaths.” Ariès believed that when the bedside ceremonies were completed, and peace had been made, death was tamed because it was under God’s control.

“In the twenty-first century,” says Miriam, a hospice counselor, “the good death, like the good birth, speaks to me about the need for control or a plan.” These days that plan is often not God’s plan, as was believed, by many, not that long ago. Baby boomers might be, as a generation, the first group to face death without the structure or comfort of faith. Religious counsel has largely been replaced by secular grief counselors, who call upon the rhetoric of psychology and are parachuted in when tragedy strikes. Our grandparents trusted doctors: they were like priests. This was before Google turned us all into specialists. What does this mean for us? In the absence of faith, what do people want?

“No pain, no symptoms, mental clarity, choices around location, love, a big screen TV, a death without lingering, death without ugliness,” muses Miriam.

“What do they want?” she goes on: “A sense of humor, grace, profound final conversations, no final conversations, no death, to hear that it has all been a mistake, to be able to return to work, no service, no funeral. No place in the ground that will be a site of weeping and remembering. And, yet, to be remembered. Somehow.”

“We’re terrified,” she says, “that we need to be our own specialists.”

We know everything and nothing. We’re terrified that no one really knows anything. It is hard to have a good death when one is in terror. I saw many good deaths in hospice where both patients and their families were ready and death occurred gently, and I also met people who felt they were failing at their own deaths; some who didn’t feel ready to die, others who felt frightened and unprepared.

There were many times I, too, felt frightened and unprepared in the face of a difficult death. Some deaths are tame, others are feral: wild and unpredictable. I felt helpless one evening when I was called to see a young woman who desperately did not want to die. Death, like birth, has a momentum of its own. Her breathing was rapid and shallow like a woman in the transitional stage of labor. The only thing I could think to do was to match her breathing; a rhythm that, once started, brought back my own experience of birth. When my pain had been too intense, panting had helped to ease it. When I didn’t think I could go on, focusing on the breath helped. As I slowed my breathing, she, too, slowed hers. I talked to her about breath and transition and the hard labor of dying; the language of birth was no different from the language of death. There had been no time to put a chair beside her bed; when I came into the room, I sat on the side of her bed. When she died, my face was inches from hers, and her parents were each holding one of her hands.

With birth, we labor to bring a squalling baby into the room; what then, I ask with no small amount of exasperation, do we labor for in our dying? This feels like a brainteaser, a thanatological Rubik’s cube. Imagine three rooms: one we come from, one we live in, and one we exit into. We labor to be born, and we labor to die. We enter with our mother’s hard work and exit with our own hard labor. The obvious analogy is the clichéd one: we come from the unknown and depart for the unknown. In between we dig ditches, build cities, plow fields; we toil under the midday sun, and exhausted, we share the fruits of our labor. Maybe, just maybe, what matters is not the purpose of the work, but the work itself.

Work through the morning hours, goes the old hymn, work in the glowing sun. Work for the night is coming, when man’s work is done.

It can be a comfort for some families to think of dying as work. There is a purpose to work, an inherent self-sufficiency. If we can work, we can look after ourselves. There is a feeling that we are not completely helpless. Breath is crucial to both kinds of labor. Prenatal classes focus on breath and pain; the progression in Lamaze classes is from deep to shallow breathing. The dying, too, move from regular deep breaths to shallow mouth breathing. At the end, the dying often look like fish out of water, their mouths opening and closing in a kind of reflex. One could almost mistake these last breaths for silent kisses.

The sights and sounds shook me. There were nights, after a difficult shift, where I would take my clothes off and drop them outside the bedroom door. Nights I didn’t want to touch my children; when I felt I carried death with me on my skin like a contagion. Once, after a visit where the smell of death was too strong, the nurse I was with stopped the car and we got out and buried our faces in a lilac bush hanging over a white picket fence in a quiet neighborhood where nobody needed us.

Everything we love, we must leave. How is it we are not inconsolable? Like water running or baby crying?

Of the twelve principles for a good death identified by the authors of the British study, The Future of Health Care of Older People, eight have to do with control—from the right to know when death is coming to retaining control of it when it happens. As much as we plan for death, there is something that escapes us, something we can’t quite take in. “One of the main reasons it’s so easy to march men off to war,” says Ernest Becker, is that “each of them feels sorry for the man next to him who will die.” Unlike lion tamer Claude Beatty, who tamed his cats with a chair and a whip, we use our intellect to try to bargain with death, thinking we can make a deal, forgetting there is a wildness at the heart of it.

Some of us drink beer instead of hard liquor or vow to smoke five cigarettes a day instead of twenty-five if only we can keep smoking; some, like the thirty-three Chilean miners hauled up out of a collapsed mine twenty-three hundred feet deep in the Atacama Desert on August 5, 2010, after sixty-nine days underground, promise to give up mistresses and return to the Church as new and devoted men.

We forget, as Kay Ryan’s poem “On the Nature of Understanding” shows us, how unpredictability is built into things:

Say you hoped to

tame something

wild and stayed

calm and inched up

day by day. Or even

not tame it but

meet it halfway.

Things went along.

You made progress,

understanding

it would be a

lengthy process,

sensing changes

in your hair and

nails. So it’s

strange when it

attacks: you thought

you had a deal.

Within days of working at hospice, it became clear to me that what we hope to control and what we actually control are vastly different things. “We are most deeply asleep at the switch,” writes Annie Dillard, “when we fancy we control any switches at all.”

A man in the final stages of ALS reconnected with a daughter he had been estranged from for many years. Paralyzed from the neck down, he wanted to change his will to include his daughter, but his second wife did not want it changed and would not help him. The day before he died, four colleagues from work came to his house, carried him to the car, drove him to a lawyer where he responded to questions by blinking his eyes and succeeded, in this way, to change his will. He went into respiratory distress that evening and died shortly after being given enough morphine to feel that he wasn’t suffocating to death. Our idea of control may undergo profound changes as we approach death. Vaclav Havel believed that hope was not the same thing as optimism. It was not, he believed, the conviction that something would turn out well; rather, it was “the certainty that something makes sense, regardless of how it turns out.” In the end, what we control may be as minute as the blinking of an eye.

One night recently, Patrick and I curled up in bed and watched Philadelphia on my laptop. In the morning, he commented that the final scene, where Tom Hanks lies dying of AIDS in a room full of family and friends, seemed like a portrayal of a good death. In 1993, when Jonathan Demme made the film, the disease was still a stigmatized illness. That same year, Russian ballet star Rudolf Nureyev, known to have AIDS, was said to have died of “cardiac problems.” He was buried in his evening clothes with his medals and favorite beret.

In the mid to late eighties, young men, dying of AIDS radicalized the dying process. Their bedside ceremonies were secular incarnations of the tame deaths of the Middle Ages. AIDS activist David Lewis, a Vancouver psychologist who committed suicide in 1990, disclosed to a local newspaper that he had assisted in the deaths of eight of his friends who had the disease. Lewis’s friends came when he decided it was time; one secured the seconal that was needed, others sat with him visiting, drinking a few beers, and saying good-bye. A nurse set up the IV, but the suicide note left by Lewis was clear that he had turned on the spigot releasing the drugs into his system. He died within the hour. For Lewis and his friends, death was a kind of final political act.

We want to believe in the good death. With all our hearts, we want to believe in this.

Often, when death finally comes after a long illness, it is good simply because it is an end to suffering. I saw people who were ahead of their own deaths; people who were ready but whose bodies were not quite done. I saw families who said their good-byes and then waited for what seemed like intolerable days of pointless suffering; people who questioned whether or not we were kinder to animals, by putting them out of their suffering, than we were to our own kind.

Joseph, a Bahá’i, knocked on God’s door every night. Too weak to get out of bed, each night he visualized himself standing in the doorway, calling into an empty room.

“Hello,” he called out, “is anybody there?”

All around him he could hear the scratchings and scrapings of ascension. Every night Joseph went to the door, and every morning he cried to find himself denied access.

The door of knowledge of the Ancient Being hath ever been and will continue to be closed in the face of man, decreed Baháu’llah. How fair is that? Joseph was ready to die two weeks before his body gave out.

It’s a long walk we take at the end to meet our maker. You’d think someone would answer when we bang on the door.

In a visit reminiscent of the scene in which Tom Hanks, enraptured, listens to Maria Callas singing the aria “La Mamma Morta” from Umberto Giordano’s opera André Chénier, I met a thirty-year-old man dying of AIDS who was listening to The Four Seasons by Vivaldi when I arrived in his small rooftop garret. The volume was cranked as high as it could go, and there was both a madness and an exquisite beauty to the violin’s interpretation of “Winter.” That’s all I remember—sitting beside him, listening. Tears streaming down both of our faces.

My nephew, Isaac, was born deaf. A few years before he died of AIDS, in his early twenties, I learned sign language so that I could speak with him. When I painstakingly spelled out my first greetings to him, he turned to his mom and signed, “Is there something wrong with my auntie?” My words, slowly and deliberately formed, hung in the air one silent letter at a time. The sign we both understood was the one he made for crazy as he kissed my cheek and took off out the door.

At Isaac’s funeral, in a hall on the Burrard Reserve on Dollarton Highway, his father, Leonard—who had just finished a round of chemo for throat cancer—bent down low, spread his arms wide open, and began, haltingly, to dance his son’s eagle dance. It wasn’t that he became an eagle that struck me so deeply, but that he remained a man, earthbound, limited, moving in sweeping circles around his youngest son’s casket. Tilting toward earth the way the great birds do.

And what was it we wanted? To be remembered. Somehow.