addressing our fears and beliefs
So how do we achieve this elusive “good death,” or at least improve our odds of achieving it? How do we prepare for our own deaths, and equip ourselves so that we can help our parents, spouses, friends, and others we love when they are terminally ill? How do we move beyond the simple framework of advance directives and learn ars bene moriendi?
When I posed this question to Dr. Alan Mermann, chaplain at Yale School of Medicine, who teaches a course on dying to young doctors, he told me a story about a train engineer. The engineer, he said, drove a train from New York to San Francisco on a regular basis. The train tootled through the various cities and towns of the east, but once it got beyond Chicago, it picked up speed, soaring more than 100 miles an hour through vast, empty expanses of land. One day the train was flying rapidly around a long curve when the engineer spotted a freight train derailed across the track ahead. Without hesitating, he grabbed the throttle and pulled it with all his might, propelling the train forward with so much power that it cut right through the blockade. The train suffered little damage and no one aboard was badly hurt. Later, reporters clamored around the engineer, all of them asking the same question: “What made you think to speed up? Why didn’t you apply the emergency brake instead?” The engineer explained, “During all the years that I’ve been an engineer on this train, I’ve spent hours and hours and hours looking at the rails, going through this town and that town, and thinking of all the possible things that could go wrong and what I might do. When I saw this happening, I’d already thought through the possibilities many times and so I knew exactly what to do.”
We all know for a fact that we are headed for a crash. We know that we will die and that we will face the deaths of those we love. We don’t know when it will happen or how it will happen or how we will react to it. But like the engineer, we can brace ourselves for the possibilities. We can prepare ourselves, both intellectually and emotionally.
But to do that we need to move beyond the periphery, where we peek with morbid curiosity at the truly horrible and hold intellectual debates about the rights of dying patients, and enter the terrain of death. We need to step closer, and then even closer still, until we feel the cold gust of death upon our souls. This is the frigid inner sanctum, where death is personal and real. It is not an easy place to be, but neither is it as horrible as we imagine.
Before you sign advance directives or make a suicide pact or learn about life support, take a good, hard look at this fellow with the scythe. Explore your own thoughts on death. Think not just about safe, sterile subjects like the medicine and legalities and ethics involved, but about death, the big picture. Death with a capital D. Because when you sign a living will or make a promise to a loved one, you’re not talking simply about using a medical procedure or refusing it. You’re talking about finality. About mortality. About pain and disease and decline and final good-byes. It is easy to say, “I would never want that procedure,” but have you tried to put yourself inside the mind of a dying person? Have you ever really imagined what it is like to make life-and-death decisions for someone whom you can’t live without?
In order to handle this ending with any tenderness or finesse, we have to face our fears and begin to accept the reality of death in our lives. For it is our fear, and the resulting denial, that makes us ball up and freeze like a threatened spider when death comes calling. It is our refusal to even imagine the crash that leaves us so stunned when the worst is imminent. We have to accept that the crash will happen. We have to imagine the unimaginable. And we have to confront whatever anxieties and phobias we harbor so that they don’t suddenly rear up and block us in the final hour from doing whatever needs to be done.
Some of the more common fears and views of death are outlined here, but you should delve into this subject on your own. Spend some time with it. Roll it around in your mind. Don’t obsess; but do explore. You don’t have to sit pitifully in the miasma of death, the nauseating fog of dread and pain; but you should examine the reality. Take control of it. What is it, exactly, that makes you panic at two o’clock in the morning about a brain tumor, that makes you put off a visit to a terminally ill friend, that makes your heart race when you contemplate the end of your own life or the life of someone you love? What aspect of death is most frightening for you? What is not frightening? What do you believe about the existence of an afterlife and the meaning of our brief appearance on this planet?
By opening our eyes and exploring our feelings about death, in solitude or with others, we can take hold of our fears, alleviate them, pinpoint the issues that need our attention, become more comfortable with the subject, and prepare ourselves, just a little bit, for what lies ahead. By pulling the Grim Reaper out of the closet, out of the shadows and into the light, and taking a good hard look at him—and doing so over and over again until he is a part of our lives—we can truly begin the process of reclaiming death.
facing fears
I think it was Woody Allen who said, “I’m not afraid of death. I just don’t want to be there when it happens.” I’m always surprised when people tell me they are not afraid of dying. With the exception of my grandmother, who died a few days shy of her ninety-ninth birthday, had completed all she needed to do in this life, had lost most of her closest friends, and believed absolutely without question in an afterlife, I can’t imagine that anyone could have no fear of death, or at least not have a large dose of gut-churning dread. My guess is that most people who say this simply have not given the subject enough thought, for fear of death, as far as I can tell, comes with being human. Ernest Becker, in his Pulitzer Prize–winning book, The Denial of Death, argues that we feel not just fear, but terror, and it is our lifelong attempt to deny death that drives almost all that we do.
In any case, if we don’t acknowledge our fears, we will be completely stunned when we face the death of a loved one, and we will respond in ways that we will later regret.
What’s surprising is that when we do dig into the gloom and grab hold of our true feelings about death, our deep-in-the-soul feelings about it, we often discover that our biggest concerns have nothing to do with medical treatment and prolonged suffering. Oddly enough, the only aspect of dying we have ever discussed or addressed on paper, our medical care, is not even all that critical to us. Our biggest fears, at least when we are standing at a safe distance from death, are often focused on other issues.
Most people have at least some existential angst, for it is nearly impossible to imagine the state of being dead. Even people who believe in an afterlife often have trouble coping with the image of themselves being gone from this world. Where will we be? What happens to the soul, the spirit, the ego, the memories, the relationships, and all those unfulfilled dreams? We have no memory of an existence before this one, but somehow the idea of not existing in some way, shape, or form in the future is unnerving. It’s disturbing to imagine the world going on without us—coffee brewing, school buses blocking traffic, our friends getting together, our children and grandchildren growing up. The fun continues but we are erased, blotted out, from each scene.
Coupled with this, most of us have practical concerns. One of the most common fears cited in connection with terminal illness is the fear of being a burden to one’s family. We don’t want others to have to care for us, to be saddled with enormous bills, or even to worry about us. We also dread death simply because we aren’t finished yet; there is work to be done, business to be wrapped up. We have young children to raise or a spouse to care for or a project to finish or a deal to complete or a goal to reach. Maybe we want to contribute something to the world before we go, or we are waiting for our retirement to relax, travel, and spend time with family. We still have journeys to take and dreams to realize.
Then there is the overwhelming sadness that death, or the proximity of death, will bring. Whether we have finished our work or not, we don’t want to leave the party. We don’t want to miss out on what lies ahead. Like the child who resists bedtime, we want to stay up and see what’s going to happen. We want to see how things are going to turn out, who’s going to marry whom, how many grandchildren we will have, and whether the space station will work out. We don’t want to miss out on any big news or good times or interesting gossip. We want to stay and hang around with our friends and family.
What I find disturbing is that not only will you have to leave the party, but you have no idea when. Which headache, bump, or cough will lead to a deadly diagnosis? Do you have thirty years left, or just a few more days? And how will it happen? Will it be sudden or slow and grueling? The unknown aspect of it all, the surprise attack involved, is unsettling. We control, or seem to control, so much in our lives, but we have no control over the Big Whammy. It’s going to come to us and to our loved ones, but we have no idea when or how. It just looms, a flickering possibility, each time there is a new ache or pain. Who wants to do a breast self-exam or get their colon checked under such a shadow? It sometimes seems that if we only knew the timing of our deaths, if we knew how long we get to stay and when we will have to leave, we could face this whole thing a little easier. But then again, maybe not.
I sometimes fear learning that I have a life-threatening disease more than I fear the actual process of dying. I figure that I’ll be so sick and drugged in the end I won’t know or care about what’s happening. But I am terrified at the thought of the diagnosis, the moment when a routine exam or simple biopsy turns out to be not so routine, when the doctor turns to me and says, “I’ve got bad news.” I fear those early days when I am deciding about brutal treatments and dealing with family members and trying to digest the whole horrible nightmare.
I had a new, but fortunately very brief, thought on all this after attending a relative’s funeral not long ago. Family members and friends were standing around, drinks in hand, reminiscing. They remembered the best in this person, but mostly they rolled their eyes as they recalled some of her less favorable traits. All I could think was, “What will they say about me?” Suddenly, at that moment, the saddest thing about dying was the thought that people’s memories of me might be mediocre, or worse. I want to go out with a little glory. The service should be packed, with one tribute following the next. “What a terrific person she was,” I want people to say. But instead I picture a gathering of my immediate family. “She was okay,” they say. “A little pushy, but okay.” How depressing.
A more disconcerting thought than that of actually being dead, for most of us anyway, is imagining the process of dying. While the physical decline and pain may be less of an issue for a young, healthy person who feels invincible, it can become an overriding concern once someone has been sick and has experienced the onslaught of both illness and treatments. It’s horrible to imagine harsh treatments, unremitting pain, full-body nausea and fatigue, not to mention the dependency brought on by serious illness. Then there is the loss of usefulness, loss of looks, loss of control, loss of respect. Some people have very specific fears about the process—they don’t want to be on dialysis like their sister was, or they don’t want to ever lose a limb, or they can’t stand the idea of going bald.
Personally, I don’t like the idea of people treating me differently. I wouldn’t want them whispering their sympathies or looking sadly at me. I wouldn’t want them being nice in a false sort of way, or avoiding me because I was sick. I don’t like the idea of them saying, “Did you hear …?” to each other. I wouldn’t want them watching my every act and deciding whether I’m being stoic or wimpy. Some people keep news of a serious illness a secret from even their dear friends, in part because they don’t want to endure such sympathy or scrutiny.
A fear of loneliness is sometimes mixed into this brew, for surely dying can be lonely, especially in this day and age when people dodge anything hinting at serious illness or death. Even if others are compassionate, they can’t share your pain with you or begin to understand what you’re going through. Ten months before she died, Barbara Rosenblum wrote in her book, Cancer in Two Voices, “If you think standing by yourself waiting for someone to talk to you is lonely, if you think holidays alone are lonely, if you think that not having a relationship for a long time is lonely, if you think that the long, frightening nights after a divorce are lonely—you cannot know the aloneness of one who faces death, looking it squarely in the eye.”
Mixed in with these relatively rational fears are the less rational ones, the bizarre ones that sneak into our logical minds and refuse to leave. These are the ones we hesitate to admit. Some people can’t stand the thought of their bodies being mutilated or cremated, or decaying in the ground. Some have visions à la Edgar Allan Poe of being buried alive and then clawing at the top of a coffin as the air is slowly used up. One person I interviewed told me that when he thinks about death he can’t help but imagine himself cold and lonely in a coffin. These fears seem ridiculous when spoken, when they are brought to light; nevertheless, these are the shadowy fears that hide under our beds.
Sometimes what really haunts us is not the thought of leaving the party ourselves, but of seeing someone we love leave. We don’t want to be left on this earth without this person. We are unable to contemplate death or even discuss it because we are so terrified of being beaten to the grave by someone we need. “Please God, just let me go first,” we pray.
Most of us don’t fear any one thing; we harbor a mixed bag of fears. And at times, mingled with the dread and worries, there is also a vague and odd sense of relief, for death means that we won’t have to hurry or try or hurt anymore. We won’t have to fail or worry or struggle. We know the fight will be over and we can rest.
Whatever your own fears and dreads and concerns are, tease them out, one by one, examine them carefully, try to address them, and then revisit them at another time, for they will change. The less logical fears should deflate under serious scrutiny. As for concerns about the ego and the disappearance of the Self, well, that requires deep soul-searching and a lifetime of religious and spiritual review. Do we continue to exist, and what does life mean in its finite form? These are questions that have kept theologians engaged for thousands of years.
Are you worried about leaving things unfinished, unfulfilled, unresolved? Then find time to take a postponed trip, to mend a frayed relationship, to finish a half-baked project. Are you frightened by the legacy you will leave? Think about the memories you can still create, the impact you can still have, the gifts you can still give. What might you bestow on others? How might you become the kind of person you want them to remember? Are you afraid of pain? Talk with your doctor and loved ones about this issue so they know that you want them to treat pain aggressively. You might also learn some techniques, such as meditation and biofeedback, for easing pain.
None of this is easy. And examining your fears won’t make them disappear. Fear and dread will always be there. But it is better to address them than to ignore them and then discover later that they are there, like some horrible warts clinging to your soul, boulders blocking your path.
seeing the reality
Perhaps the most important thing you can do is actually imagine death. Next time its ghostly image creeps into your thoughts, fight the urge to cast it out, to switch channels. Instead, invite it in. Walk through your own death and the deaths of those you most love—not in one sitting, but over time. Imagine yourself getting bad news and moving through the process. Imagine standing at the bedside of your parent, partner, sibling, child. Imagine yourself facing death in one way or another. Of course, most of this is wholly unimaginable, but trying to do so is a good exercise. Like the engineer who envisioned the crash, it prepares us.
I have done this many times now. I imagine how I might respond if I were told that I had a terminal illness. I think about how I would react if I were caring for my husband, refusing further treatment for my mother, saying good-bye to a friend. I think how I might feel, whether I could act, and what I might regret. I walk through the process, and as I do so, I sob pitifully into my pillow. Then I lie still, exhausted but not sleepy, staring out the skylight above my bed at the darkness beyond. I roll onto my side and see the bright red numbers on my clock. Then I creep quietly down the hallway, going first into one room and then another, so that I can gaze upon my sleeping children. I stroke their soft hair, listen to their gentle breathing, pull up the covers, kiss their cheeks, and draw in their sweet scents. Then I go back to bed, oddly fulfilled. Cold from the trek, I snuggle close to my husband, feel his warmth, love him enormously, and fall asleep.
Imagining the dreaded dragon is not simply an exercise in tears; it prepares us. It forces us to imagine the unimaginable—what would we do, how would we act—and it starts us on an interesting grieving process that is sad but also wonderful. Wonderful because we wake up in the morning and can seek out the beloved person we’ve imagined losing, spend time together, hug, laugh, and play. Hallelujah. We still have time together.
My mother is vitally important to me. She is in her seventies, and while still active and youthful, she has chronic lung disease. One bad cold or too much exertion could put her over the edge. With rest and therapy—inhalers, antibiotics, regular sessions with the respiratory specialist, daily back-pounding to loosen the mucus, and so on—she might be able to keep this thing somewhat at bay. But she is not the best patient, and her condition seems to get progressively worse. As her coughing becomes harder and more constant, her breathing more strained, and her body more frail, I am tempted to confine her to her room, enforce daily therapy sessions, and monitor her every move with a masterful glare and an unwavering voice. I will stop this process from happening. You will not move from this spot if that is what it takes to keep you alive. You can’t die. Not ever. I won’t let you. Get in bed and take your antibiotics.
As I have thought about all of this, I have gleaned this bit of truth: one day I will have to let her go. No matter what I do, no matter how many antibiotics she takes, my mother is going to die someday. She is not likely to live to be 99, as her mother did. This is a horribly large and chalky pill for me to swallow, and each time I try it gets caught in my throat, leaving me unable to breathe. My mother is my lifeline. A sweet angel who has made my life okay at its very least okay times.
Confronting this has changed the shape of our relationship, and of my own life. It has allowed me, as I say, to grieve while I still have her. I can call her. I can go see her. I can watch as she gets down on her knees and plays with my children until they are shrieking in delight. I can lie in the grass with her and stare at the treetops, while we share our strangest thoughts, most embarrassing memories, and rampant insecurities. Best of all, I can hug her. With her arms wrapped around me, I am like a spent battery being recharged, and I know that she is too. I will miss her, more deeply than I can possibly imagine; but I love that I still have her.
This grief—what experts would call “anticipatory grief”—has prepared me, a little bit, for what lies ahead. I think that I will make reasonable decisions about her medical care if I am ever in such a position. I don’t believe I will push it beyond what she would want. I know how to comfort her. And I am pretty sure I will be able to say good-bye, for we are well aware that the time will come one day, and so there is nothing unsaid, nothing unshared, nothing unknown.
It’s been a desperately sad process, but I am, I believe, far more prepared for what lies ahead because of it. I appreciate my mother more than ever before. And I am also learning to let go, to let her live life her own way, which means fully and unhampered. Oh, I still wag my finger at her, give her my sternest look, and suggest she skip the next tennis game or swim in the ocean, but then I watch her go and I am glad that she is so enjoying her life, even if she might be cutting it a tad short. I realize, at those moments, that my urge to protect her is largely selfish, that I want her to stay well for me. I have to release her from my clutches, just as she let me go, allowed me to waltz out into this crazy world, so many years ago.
Sometimes I get a shade embarrassed when someone turns my way and innocently asks what my latest book is about. I usually pause for a moment, wishing the conversation hadn’t taken this turn, and then I say it: “Death.” The questioner and any others who happen to be listening are silent for a beat and then they let out a little “Oh” and say something like, “Well that’s awfully cheery of you.” It sometimes feels as if I have opened a window and let in a blast of icy cold night air, or drawn a large, haunting shadow over a lovely evening. I have silenced the players. Caught them off guard.
At this point the conversation usually veers quickly onto another track, but once in a great while one person—typically someone who has lost a loved one—says with genuine interest, “Really?” and then he starts talking about something he experienced or thought about or read about. Reluctantly, one or two others join in and then, if the mix of people is good, the conversation picks up speed and soon everyone is enrapt in a discussion about, believe it or not, death.
The fact is that while most people are not immediately open to talking about death and virtually everyone is taken aback when the subject is first raised, pretty much everybody has something to say about it. Everyone has thought about death, even if they have never thought about it in depth or discussed their thoughts with others.
One issue that arises in these discussions is, is there an afterlife? Is my dear departed mother still around, still present, in some form or another? Is she content, happy, or troubled? Can she communicate with me? Will I continue in some other life? Will I see others whom I have lost? People tend to have strong beliefs about an afterlife, even though they may or may not have spent a lot of time thinking about it. Most have a gut reaction, a firm stand based on fervent emotion, religious study, childhood lessons, or a memorable story: Moments after so-and-so died a beautiful butterfly hung around my back door; just before he died he spoke of a light or a person beckoning; I often hear her voice and sense her presence.
There are no right answers, of course. The idea of an afterlife has no scientific basis; it can neither be proven nor disproven. But the questions are important. They help us to shape and clarify our views about life, death, and dying. They help us prepare for death and give death context in our lives. They help us to begin the process of speaking more openly and honestly about death and preparing for it.
What do you believe? Not what do you want to believe or what do you think you are supposed to believe, but what do you truly, in your most honest moments with yourself, believe? Is there an afterlife? If so, what is it like? Who will you see there? Will you be able to check on those who are still alive? Do those who have died speak to you now? How might your behavior in this life shape your death or any existence that might follow? How does the existence or absence of an afterlife color your view of death?
Religions around the world are largely based on finding some meaning for death in our lives and understanding what happens after death. Most religions view death not as an ending but as a beginning or a transition. Life as we know it, here in our earthly bodies, worried about what’s for lunch and whether we will find a good parking space, is merely part of a greater journey. When we die, we don’t stop being; we pass on to the next stage.
Religious beliefs, when they are strong and an integral part of one’s life, provide a framework for death, a way to include it in one’s life, to prepare for it, and then to approach it. This structure and continued preparation, more than the actual details of the particular belief, help to make mortality and the process of dying more manageable. Sylvia Vatuk, an anthropology professor at the University of Illinois in Chicago who has studied India and the Hindu culture extensively, says that elderly Hindus discuss death openly and comment frequently on how they have lived good, long lives and are ready for death. “Doubtless they talk this way not only because it is considered culturally appropriate to cultivate equanimity in the prospect of death,” she says, “but because the very act of repeatedly speaking of it helps them to achieve that state.”
Every now and then I envy my grandmother, who didn’t believe there was an afterlife; she knew it for a fact. At 98, she wasn’t worried about leaving the party; she was anxious about missing it. For the party was not here, but on the other side. Her husband and dearest friends had all passed away, and as far as she was concerned they were at a giant cocktail party in the sky and she was the only invitee who still hadn’t shown. The problem was, her driver was nowhere in sight. She was as healthy as an ox (she rode a stationary bike three miles several times a week) and sharp as a tack (she sent birthday cards, on time, to 15 grandchildren, and could still remember the rules of the games she had played as a child).
Every year, late in the fall, Grandma would settle down in front of her television set to watch the Army-Navy football game, not because she was a sports fan, but because she and her husband, a Navy man, had watched this particular game together when he was alive, and she was quite sure that he was somehow still watching it. This was as close as she could get to him, given their situation. It was her little romantic rendezvous.
One day Grandma got sick and several days later, ready and willing, she died. Here’s the kicker: she took her last breath hours before the start of the Army-Navy game. There was no doubt about her timing. Finally, Grandma was going to watch the Big Game with her man.
For people like me, who don’t have my grandmother’s unwavering faith, a question arises: if there isn’t some sort of afterlife or continued existence, then what happens to us when we die? Do we simply turn into good compost? And if that’s the case, then what’s the point of life? Why are we here? What do we want to accomplish in our brief stint upon the stage and what difference does it make?