Advice for Future Corpses_and Those Who Love Them

by Sallie Tisdale

  Becker thought that the human being is the only animal both aware of its inevitable death and aware of its animal life. And humans are terrified of their animal lives. This dissonance is what really makes us unique. We live in and participate in an ecosystem of death, in which everything is eating and being eaten. But the human creature, obsessed with its inner life, also perceives the vastness of the universe. Humans know past and future as well as now. We can imagine the beginning of the galaxy and the death of the sun. Becker believed that this awareness of our small and temporary existence in a seemingly infinite space is our real problem. Humans know they have a flimsy body, limited in time, and this body is “a problem to him that has to be explained”—a body that changes and has memories and dreams and eventually disappears. The human cannot abide the thought of death and can hardly bear being alive.

  Most people aren’t wrestling with dread so much as trying to ignore a chronic background anxiety. But Becker would say this is just repression. He believed that we succeed so well at repressing the fear of death that we may deny the fear even exists—yet its energy remains, driving us on to create a network of belief and relationship in which our short, fragile lives will have meaning. We call these networks by various names: philosophy, but also psychology, science, culture, religion, and art. Repressed, anxious but refusing to experience the anxiety completely, humans create civilization.

  To contemplate death, as is done in many religions, is to invite Becker’s terror. But for many people, the result is a kind of liberation. An entire tradition of painting in Japan, kusōzu, was devoted to portraying the nine stages of a decaying corpse. The churches of Europe are draped with the carvings of skeletons. In Christian terms: “We must all die; we are like water spilt on the ground, which cannot be gathered up again.” Muslims are encouraged to contemplate death regularly. The Buddha sent many of his disciples to the charnel ground to do what came to be called corpse meditation. He outlined the specific kind of corpse a person should meditate upon, depending on their need. A person who lusts after a beautiful figure should meditate on a swollen corpse. A person who is vain about their fine complexion should meditate on a discolored corpse. One of the meditations goes like this: “Verily, exactly so is also my own body. It is of the same nature! Just so will this body become disgusting and it can never escape this fate!” This is medicine for pride but also for the false belief that we can escape change. When he was himself dying, the Buddha lay on the ground in front of everyone, saying, “Don’t look away.” Saying, “You, too, will be like this.”

  In Michel de Montaigne’s words, “We make the cure harder precisely because we do not realize we are ill.” Montaigne thought about death often. He was an erudite, skeptical man, and he wrote of intimate matters during a time of great social upheaval. He essentially created the personal essay by turning his glass on himself when everyone else was looking outward. “Let us deprive death of its strangeness,” he wrote. “Let us frequent it, let us get used to it.” Think often of death and get on with life, Montaigne wrote. “I want Death to find me planting my cabbages, neither worrying about it nor the unfinished gardening.”

  Virginia Morris suggests that you brace yourself. I like that phrase. Brace yourself. Name your fears, she says, and then names those fears, every fear she can imagine. Name each one, no matter how irrational. Rehearse the crisis like a soldier or surgeon who acts out what to do so that nothing is a complete surprise. I particularly like her way of describing death, considering how I’ve gotten here: “We all know for a fact that we are headed for a crash,” she writes. “We have to accept that the crash will happen.” So, imagine the crash. Imagine it in all its permutations.

  We are seeing the beginning of what is often called a death awareness movement. (Of course, like eating fresh vegetables and being awake during childbirth, awareness of death is just something old made new again.) Death Cafes began in the United Kingdom in 2011. At a Death Cafe, small groups of people come together in a casual setting to discuss death in any way they choose. Death Cafes are a “social franchise,” available to anyone willing to follow the guidelines: not-for-profit, promoting no particular point of view, and confidential. Several thousand have taken place in fifty-one countries so far.

  Death Salon is a different beast: the name is trademarked. It has a professional staff and holds large, ticketed public events. There are scientific lectures and symposiums on everything from pioneer graveyards and Ghanaian coffin makers to the use of CT scans in autopsies and an exhibit of “skin books” (which are just what you think they are). Death Salon is sponsored by a group called the Order of the Good Death. Its founding members are funeral industry professionals, artists, and academics. They are mostly white, mostly young, and aggressively hip with supposed professions like “postmortem jewelry designer,” “morbid cake maker,” and “international corpse explorer.”

  YouTube has entire channels devoted to dead bodies. The Nourishing Death blog, about the cultural relationship between death and food, will help you decide what you should make for your aunt’s funeral reception. If you’re interested in skin books, you can go to the Anthropodermic Book Project page. But why would we mistake an abundance of information for peace of mind? The official mission statement of the Order of the Good Death describes “making death a part of your life. Staring down your death fears—whether it be your own death, the death of those you love, the pain of dying, the afterlife (or lack thereof), grief, corpses, bodily decomposition, or all of the above. Accepting that death itself is natural, but the death anxiety of modern culture is not.”

  Perhaps we can call this a movement; I’m not convinced. I think anxiety about death is a part of being human—Cicero and Darwin and all that. Do we know of a single culture in human history that has not had rituals to manage death and the fear of death? Hiding death isn’t universal; worrying about death may be. Does all this sharing among strangers help? No matter how bluntly presented, death on the lecture circuit is theoretical, and a lot of comments on the Web don’t form a conversation. As long as we have to go to a lecture to see a corpse or meet with strangers in a coffee shop in order to talk about our most intimate of moments, there’s something vital missing. It doesn’t matter if you can attend a lecture on Civil War surgical techniques if you can’t talk to your doctor about your own death.

  I am not afraid of dying—that is, I don’t feel afraid to be a dying person, weak, sick. Sometimes I am curious. I am comforted by having seen peaceful deaths. But my curiosity about dying is the calm, sitting-by-the-fire kind. I do so want to keep on living and living and living. I can imagine being a dying person, but I still find it hard to believe that someday I will be dead. You, yes: you will die. But I—well, I don’t really believe that. Such hubris. But how can we let go of our lives? It’s impossible that you will leave me and even more impossible that I won’t exist. We walk around with a blinkered, partial denial of death. Yes, we will die, but not now, not here. This dissonance is strong and strange—to absolutely know this will happen, and against all evidence to the contrary, to absolutely not know. (It’s so hard to believe. When the Buddha’s own death was imminent, his closest followers wept and flung themselves on the ground and cried in lament: “Too soon!”) I understand bargaining. I’ve tried to make a lot of deals with the universe, and this is one: I’m ready to die if—I’m ready to die when. Just not now.

  Acceptance is found only by wholly inhabiting our denial. Contemplating death is really contemplating resistance, and for a long time. How do we get ready to die? We start with not being ready. We start with the fact that we are afraid. A long, lonesome examination of our fear. We start by admitting that we are all future corpses pretending we don’t know.

  I fly comfortably most of the time now. I rarely take prescription drugs anymore. I usually choose a window seat. I walk down to the plane, take my seat, settle in with a book. But I put down the book when the plane accelerates and attend to what is happening. I feel the speed, the lift
. I feel the wheels separate from the ground and try to give myself over to the plane’s life. Often I gaze out the window, watching clouds, shadows, light. My personal belief is that physical death is a painless dissolution of the separate self, that our true nature is spacious and unbounded. But now and then, when the plane slips and stumbles over the clouds, my racing heart returns. The organism reacts.

  Usually I feel the plane leave the ground and rise into the air and I look out the window at the vast and mostly empty, inhuman world and I think, This plane is my body. This air, this water, this earth, is my body. And in a way that has nothing to do with religion or faith or belief in what comes next: This body is me. And it will someday cease to be at all.

  3

  A Good Death

  Almost two-thirds of adults in the United States believe that it’s reasonable to allow a person to die sometimes. People say that living as long as possible is easily the least important aspect of facing death. They define a good death as one free of pain, peaceful, and calm. A good death includes family and friends, and a chance to reflect on one’s life. The federal government (in the guise of its Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine) says that a good death is “one free from avoidable distress and suffering for patients, families and caregivers; in general accord with patients’ and families’ wishes and reasonably consistent with clinical, cultural and ethical standards.” But what does any of that mean? Do we want to be pain-free if it means we will be sleeping much of the time? Do we want someone with us all the time, or do we want times of solitude? What if a patient’s wishes conflict with a family’s hopes, or with a clinical standard? A quiet death is not necessarily a good death. A person may be quiet and filled with emotional anguish. A noisy death is not necessarily a bad one; periods of restlessness and delirium are common with dying. Most people have loud breathing in their last hours or days but seem undisturbed by it. (I will discuss these symptoms in more detail in later chapters.)

  It can be a noisy, even fearsome struggle to be born. There may be moments of fierceness when we die. Ira Byock, a hospice physician, says that it can be “like an animal shedding its skin, a physical struggle to wriggle out of this life.” A grief specialist compares dying to the efforts of a butterfly to break out of its cocoon. Elisabeth Kübler-Ross called the moment of death the “silence that goes beyond words.” But that moment may not be quiet.

  As we examine our expectations about death, we invariably diverge from each other. If we are too focused on a specific experience—that meadow, the scent of baking bread, whether Aunt Lois will get here in time—we are presuming a degree of control that may not be possible. Rather than defining what a good death looks like, we are better off thinking about what surrounds death as it is.

  Better to speak instead about how the conditions of dying are supported. We can allow a dying person to make what choices are possible, accepting that these choices may be few and may have been made months or years before, or may in fact be made by a proxy. We can see that the person is spoken to, not about, even while acknowledging that the person may not be awake. We can treat symptoms, but only to support what the dying person wants. The person in bed leads the way, and may lead the way from words written far in the past, or from conversations with relatives, or from what is known or guessed about what this person wants. The family members and caregivers can be careful not to impose their own beliefs. This is what Virginia Morris deemed “a death unhidden, a death reclaimed.” Such a death can take many shapes.

  Perry was a veteran who had been homeless for years at a time. He was also a hunter and comfortable in the wilderness. When he was diagnosed with terminal cancer, he said that he wanted to “die like an animal.” That phrase is one of despair to most of us, but to Perry, life as an animal made real sense. It meant dying in the most natural way, the way a deer or bear would die: alone, silent, close to the ground.

  He was not strong enough to get to the forest, so he had to die in his apartment. He refused almost all medications, including anything for pain—and he had pain, sometimes a lot. He wanted to feel it, he said. He wanted to be awake to what was happening, to all of it. In his last weeks, like most dying people, he took very little food or water. But he also refused help with most of his personal needs. He didn’t want to be changed when he lost control of his bladder and bowels. He didn’t want to be bathed. That was what death meant to Perry: the failing of the body, the slow dissolution and breakdown of life into its component parts, which is a messy thing.

  Perry’s choice of how to die was distressing to most of his caregivers. He was not without support—quite the opposite. He didn’t have family, but he had a doctor, a visiting nurse, a social worker, a chaplain, and a team of nurse’s aides who stayed with him for much of the day and night, though he often refused their assistance. Most of his caregivers simply kept trying—trying to help Perry bathe, talk, to change his linens, to give him a little pain medication or water if he would accept it.

  Several people on the home care team asked the ethics committee to review Perry’s death. I was in the group that felt he clearly had the capacity to make decisions. He had in fact calmly made his wishes clear again and again. I could accept his choice by framing it as one of personal power: the right of people to make their own choices, even bad ones, even self-destructive ones. The right to lead the way, even if that way was contrary to what everyone around him wanted. And, of course, this reveals something about me, about my biases and my own desires.

  In the West, the earliest mortality charts are from the seventeenth century. It had long been believed that God defined the length of a life. Almost everyone died of accidents or infectious disease, so many people died sooner than the presumed limit. But no one could live longer. The length of life and the kind of death for each was written in a divine hand, and one’s death was a good indication of what was going to happen afterward. (Pity the fellow who died in a fire.)

  As scientists began to understand human biology, beliefs changed. Deaths from infectious diseases, accidents, and behavior—what we might today call lifestyle choices—all came to be seen as preventable, not divinely dictated. Today, most people in the United States die of chronic illness such as heart disease, cancer, respiratory disease, and diabetes. A great deal of money is being spent to change this fact—that is, to try to make all these things even more preventable, to push death back, though we have only compromised agreements for when death happens.

  Kyogen used to say to me, “I’m not afraid to die. I’m just not ready.” He always had something ahead, always more projects and plans. He wanted to write another book. He wanted to see Vienna. How did he feel that morning, stumbling down the street by himself, the chest pain like a train collision, until he slumped under a tree? How did he feel, alone on the sidewalk under a tree in the early morning, struggling to open a brand-new bottle of nitroglycerin tablets? Did he have a bitter moment or two as he waited for help? Did he know what was coming? In the crush of paramedics, the shouting, the needles, the ambulance racing, the sirens, when his shirt was ripped open for the sticky EKG pads, during the violence of what we call advanced cardiac life support, what was he feeling? Was he aware? In the long minutes of chest pounding and shock, did he know? Or was he already gone? At what point did he nod his head and say: All right. Having known him for so long, I can believe that he accepted it, that he was not afraid, that he let go when he knew it was time—and perhaps this letting go is why resuscitation doesn’t work most of the time. I can believe this, but I don’t know when he died.

  Each of the obvious signs of death—not breathing, the heart stopping, the body turning cold—can all happen without a person dying. Respiratory failure can happen, as in a drowning, without stopping the heart. The heart can stop and start again or go into a wild arrhythmia without affecting respiration. A hypothermia victim may appear dead, their skin cold and muscles stiff. All of these conditions can be reversed. Is death the un
becoming of a person, the disintegration of a person’s wholeness, which may precede organic death by years? The transformation, life to death, alive to dead, is unknowable. All we can do is choose. The traditional cardiopulmonary standard declares that death is the irreversible cessation of cardiopulmonary function. A person is declared dead from respiratory and cardiac failure only when they have had no heartbeat and have not been spontaneously breathing for some time. Is a person actually dead during resuscitation, when the vital functions are being produced from outside, through CPR and shock? We say no; he is not dead until the effort to revive him is over. (You’re dead when the team says you’re dead.)

  We may describe death as the cessation of the body’s sole function, which is staying alive—define it as the moment when the biological processes that prevent decomposition cease. How we define death depends on the direction we are facing. One approach, known as whole brain, states that human death is the irreversible cessation of functioning of the entire brain, including the brain stem. The higher-brain approach states that human death is the irreversible cessation of the capacity for consciousness. Loss of the functioning brain eventually kills the heart, and loss of the heart eventually kills the brain, and loss of breathing kills both. But at what point is selfhood lost?

  The lawyer Louise Harmon, in her book, Fragments on the Deathwatch, explores the ramifications of how we define the declaration of death. She believes the central question is not “How do we define death?” but “When is it morally justifiable to treat a person as dead?” Considering the definition of death requires us to consider the definition of life, and that requires us to consider the meaning of human being.