The Art of Dying: Facing Your Own Death

LANDOR

INTRODUCTION

The day you receive the diagnosis is the day everything catches up with you. It is indeed the first day of the rest of your life. Your entire self undergoes a continental shift, alternatives grind against each other, future years crumble into the ocean, and the earthquake fault that was always there suddenly gapes wide, a gash in the landscape of your life.

Never again will you be as you were. Even if by some miracle you heal, it will be only temporary.

A successful, hard-driving Chicago sales executive in his fifties, Bill was stunned. His wife had prodded him into the medical checkup for which he had no time. In the course of the examination, he happened to mention clumsiness in his hands and weakness in his arms, probably his imagination. Old muscles turning to flab, Doc? he’d joked. Maybe I should join a gym?

Now, numerous tests and specialists later, the diagnosis was in: Lou Gehrig’s disease, amyotrophic lateral sclerosis (ALS), a motor neuron disorder. He would grow progressively weaker, his speech would slur, and his breathing muscles would one day become too weak to function. Estimated future lifespan: maybe two years. The physician appeared genuinely sorry.

As Bill left the medical center, myriad thoughts, questions, and feelings assailed him. He commented later how odd it was that one thought bobbed to the surface like a piece of driftwood from a sunken ship: he, Bill Schering, a model of strength and power in his family and his business, would die of weakness.

He went home that day and told no one.

Most of us go through a number of preliminary bouts before the main event. The lump is only a cyst, the pneumonia clears with antibiotics, fractured limbs knit, the blood test is negative, thanks to bypass surgery we are playing tennis again. During these rehearsals, we feared that this was it. It wasn’t.

Many others of us live in a country between health and illness: The lump was cancer, now cleared after surgery, radiology, and/or chemotherapy, but it may return. To be HIV positive is to be pre-AIDS, and no one can tell us if or when the transition will occur. We have inherited a predisposition to diabetes. That shaking hand may be Parkinson’s or nonfatal benign essential tremor, but it is years too early to know.

Those of us who live with chronic illness, or under the sword of a specific disease, attest to major transformation. Both our selves and our lives are changed. We revise our priorities, placing walks down country lanes ahead of additional work that might lead to a promotion or raise. We take sensual pleasure in the here and now; we had no time yesterday. An inner softening opens us to new depths of love with mates, children, parents, friends, colleagues, even casual acquaintances. Although we would not have chosen our new suffering, we must admit to lessons positive, even joyous.

Yet no matter how long delayed, death will come, perhaps with unexpected suddenness. More often, it creeps up on us and is tapping us on the shoulder just as we had forgotten its existence.

When we learn of death’s impending arrival, we may go through a transition period of trying to maintain our daily lives, suddenly more precious than ever, and of cramming in tests and treatments as if they were a hobby. A hobby is something you can give up if you don’t have time for it. Gradually, our life veers, and for a while we are completely consumed with acquiring information about our illness, learning how to manage it, consulting other specialists. We’re going to fight this thing. We’re going to beat it. We become St. George out to slay the dragon, even as new symptoms appear.

During this period, we may begin those practical tasks of drawing up a will, if we haven’t done so; delegating regular and/or durable power of attorney to a spouse or child who can then make business and/or treatment decisions if illness eventually incapacitates us; arranging care of any minor children; evaluating a medical directive and a living will to instruct our physician in end-stage treatment—more of it or less; perhaps investigating organ donorship if we were too queasy to do so before; checking our insurance coverage and reviewing our financial status in the new light of our threatened lives; planning our funeral or memorial.

These practical tasks distract us from the horrific thing that is happening to us. We can look neither into the sun nor death directly.

At first, as we handle these preliminary practical tasks, we are able to push our deepest fears to the back of our minds; many of us have done this all our lives. Practical matters become our defense, keeping our hands busy so we don’t have to think.

It is when these projects are well under way that the real work—and, I would argue, the hardest work—begins. The day comes when the volcano, set off by the earthquake, erupts. The toughest questions bob to the surface of our consciousness, questions better answered earlier in our lives. Now time is running out, and in our often panicked, weakened, perhaps uncomfortable state, we must deal with them.

Those facing life-threatening illness are in the habit of keeping their psychological, emotional, and spiritual suffering to themselves. You may feel silly or ashamed. You may even fear that your most important questions are unanswerable, and brush them aside. Sometimes you can confide in a spouse or friend or religious counselor, especially further along in the dying process, except that you do not want to upset those you love. Mainly, you must work out answers for yourself. It is to help you deal with your deepest conflicts that I have written The Art of Dying.

Many years ago, I found myself in a hospital, standing by the bed of a dying woman. On one side sat her grief-stricken daughters. On the other stood the doctor and the nurse. I listened as the doctor and the relatives discussed the patient’s progress across her body! No, she wasn’t asleep or unconscious, and yes, she was still capable of thought and speech. Apparently, her treatment, preferences, values, individuality, past experiences, and concerns were none of her business! I think it was that moment that planted inside my breast the seeds of advocacy for these newly disenfranchised.

I am an ombudsman for those of you who have just received the dreaded diagnosis, although your death may be years away, as well as for those closer to your dying time. Caregivers have the support of relatives or medical colleagues, and so do the bereaved. But when we face our own death, we do not have fellow die-ers to see our point of view and take up our cause, or even joke in shockingly bad taste. Those tending us may do so wonderfully, but they are careful to separate themselves (or they might catch the dying from us!). They do this by making up stories about why we are dying and they are not (we ate too much, smoked, drank, took the elevator instead of the stairs, had bad genes, and the like). During our battle, they are turned from their own deaths to their own agendas regarding us.

Most books in the field of death and dying address either the caregivers or the bereaved. They ignore what you are experiencing now. In the justly esteemed AMA Family Medical Guide, the reader is addressed as you throughout eight hundred pages of various diseases. In the last section, however, the dying person is him or her.¹ Recently I received a self-care book from an HMO. I looked up Death in the index. It said, "See Grief." Death happens only to survivors?

This book is for you. Here you will find information and logical reasoning, as well as commonsense psychological and spiritual guidance on such possible conflicts as:

•  Am I living or dying? What do I have to gain and lose by thinking of myself as one or the other?

•  Should I tell others that my illness is terminal, or should I keep it a secret?

•  How much pain must I endure, and what methods of relief will be available to me?

•  I’m terrified of losing control over the great and small decisions of my life. How do I retain it?

•  How can I deal with the mutilation of my body that makes it unlovable?

•  Are there ways to counteract the stigma of my disease so that people don’t shy away?

•  How can I come to terms with what I haven’t accomplished?

•  In the past, when I lost a lover, I still had my work, my friends, and the mountains. When I die, I face leaving everything I love. How can I possibly overcome these losses?

•  I’m told I need to forgive, to reconcile myself with those from whom I am estranged. Must I go through a deathbed forgiveness scene? How can I forgive myself? God?

•  What are the consequences of leaving someone out of my will?

•  One minute I’m terrified, the next I’m furious, and the next I’m depressed. I’ve always handled my emotions well, but they’re so much more intense these days. I’m on a roller coaster of highs and lows. Why is that? And how do I deal with it?

•  What practical steps can I take to get through this stage of my life day by day? How have others done it?

•  I want to maintain my identity, my sense of who I am. More than anything, I don’t want my children to see me confused or out of my mind with pain, or as someone they don’t recognize. Are there ways of preempting these possibilities?

•  I need to feel that my life has had meaning, but sometimes it seems like such a waste. Is there any way, at this late date, to make my life more meaningful?

•  What is dying like? What’s going to happen to me when I die? There isn’t any way of knowing, is there?

•  Is there life after death? If my religion is not guidance enough for me, how do I know what to believe?

•  I used to be the one who helped others, but increasingly I face dependence on them. I know I should be grateful, but I’m filled with resentment. What can I do about this?

•  Is there any way of seeing death as positive rather than hideous and terrifying? Can the process of dying enhance my spiritual development rather than end it completely?

•  I keep most of these questions secret, sometimes even from myself. I don’t want to upset my husband (daughter, dad, partner, friend). The doctor has other patients, and the nurse says not to think this way. I get the feeling it’s in bad taste to ask these questions. Where can I turn?

One place you can turn is this book, The Art of Dying.

These major conflicts are hardly new. In adolescence and at midlife we wrestle with issues of life meaning, identity, control, and feelings that much of life is a waste. We question whether we should make major changes in relationships, career, and lifestyle.

All our lives we struggle with dependence versus independence. As toddlers, we visited strange households and ran away from our mother’s knee to explore, returning to familiarity and safety a short time later, and ranging a bit farther each time. As adolescents we rebelled against the security we needed. As husband and wife, we fight.

Near the end of our lives, however, many lifelong conflicts intensify or take new twists and turns. Some solutions that stood us in good stead at seventeen or thirty or fifty-five may help us now, but we must modify others and create new ones. For example, one coping strategy that has soothed our dissatisfaction with our accomplishments has been to look to—even plan—the future. When we are dying, that strategy changes.

Here you will learn to adapt old solutions and create new ones.

This brings us to a major point. You may think you have no experience with dying, that you’re a death virgin. You can rehearse giving speeches, changing diapers, mollifying the intractable boss, but you’re doing death for the first time. However, it is likely that you’ve had other illnesses, so you’ve experienced the pokes and prods, the daunting machinery, the hospital system, the personnel who range from compassionate and professional to uncaring and inept. You may also have tended someone else who died, so you know the ugliness and the stench, as well as the unexpected spiritual strength and beauty. You’ve read death scenes in great literature, such as Tolstoy’s The Death of Ivan Ilych. Indeed, you’ve read the morning papers! You’ve had much experience in resolving previous forms of the major conflicts that intensify toward the end of life, such as life meaning, dependency, and control.

Finally, you are always you, unless you develop an illness like Alzheimer’s (of which more later). You are the bridge between living and dying, your own bridge that you travel across. You may find that, on the dying side, you do more living, and that you were deader than you thought when you were more alive.

I have organized the chapters in The Art of Dying very roughly in the order that the conflicts I seek to help you resolve might arise, from early physical concerns to emotional to spiritual, from practical and psychological control to transformation. The first two chapters orient you to the positive aspects of living your life in the full awareness that you will die, and offer you the opportunity to test yourself on your feelings about death, thus cutting death down to size. Chapters 3 to 7 offer psychospiritual assistance with the early practical decisions and problem management that you are likely to face. Coping with the psychological conflicts surrounding mutilation, shame, pain, emotional struggles, and hope are the focus of Chapters 8 to 12. They include twenty-seven rules for dying the right way, and one rule for doing it your way. Chapters 13 to 16 stress more control over our dying, with decisions regarding aid-in-dying and identity. Chapters 17 to 22 assist you with specific spiritual problems such as forgiveness, transcending loss, letting go, coming to terms with what’s left undone, creating life meaning from despair, and teaching others by how we die. The last five chapters address creating your own final rituals, evidence for and against the existence of an afterlife, enhancement of spiritual growth, and, finally, what happens when you die.

The substantial Notes and Resources section at the back of the book helps you explore any of these topics in more detail.

In The Art of Dying, you will learn the positive rewards of living in the full recognition that you will die. The surprising result is that the prospect of dying in the future may solve a lot of problems in the present.

In short, this book offers you death insurance, an opportunity to learn what to expect and how to prepare, plan, control, rehearse, and gradually transform yourself from your physical life to a spiritual one. You will also gain solid information on resolving the major lifelong psychological and spiritual conflicts that intensify and take new forms in the end-time. Most important, and with the help of a number of exercises, you will be able to integrate the positive gifts that death and dying bestow, thereby transforming whatever time you have remaining.

We began this chapter with the story of Bill. You’ll recall how stunned he was at his doctor’s verdict of ALS. We shall follow the course of his growth and development throughout the book, and we shall also have the chance to meet many others struggling through—and triumphing over—the difficult process of dying. They are an inspiration to us all.

In the mid-1970s, toward the end of the human potential movement, a book appeared entitled If You Meet the Buddha on the Road, Kill Him!² This maxim shocked me until I discovered what it meant. There are different interpretations, but one is that anyone who claims to have all the answers to the most important metaphysical and philosophical questions of our lives is either lying or deluded. No one is God except God.

While you read The Art of Dying, remember that no guru can tell everyone else how to die. But I do believe this book will help you bring to consciousness that which you already know. Ignore what feels wrong or contradicts your beliefs, and embrace only what works for you. I mean to bolster faith with information, reasoning, and intuitive truths, not to meddle with it.

As a psychologist with many years of experience in teaching death and dying courses, counseling the bereaved and the dying, leading seminars and workshops, speaking to various community groups and conventions, conducting research, and publishing work in the broader field of loss, I have found that religion is, indeed, a godsend for many people—although not for all.

Whatever resonates to the wisdom deep inside you, that is what you must follow.

1

PREPARING FOR DEATH CAN TRANSFORM YOUR LIFE

How much time do I have?

It’s the first question we ask when we receive the dreaded news. Cryptic numbers on lab slips, vague shadows on X rays, reports from machines scanning and monitoring our bodies—all signal that our time is limited.

Physicians are the first to admit that prognosis is not an exact science. They answer questions in terms of likelihoods, probabilities, and statistics. Your doctor may respond, With the medical treatment I propose, roughly 45 percent survive the five-year mark. That means roughly 55 percent don’t. And you ask, What kind of survival?—vegetative or fully human?—even when you know he can’t tell you. Each patient is different, he says. Undoubtedly, he could tell you stories of patients at death’s door who rallied inexplicably and lived ten years longer. (He could tell you stories of disaster as well, but he won’t.)

So you don’t know how much time you have left. Not with any certainty. But then, you never did, did you?

The fact is, you could have asked, How much time do I have? throughout your life. Perhaps you’ve filled out one of those questionnaires subtracting points for smoking and adding points for seat-belt use. On the basis of insurance statistics, they estimated your life span as twenty years beyond your present age.

The only answer to your question is that you used to have more time. Life has always been risky. War, AIDS, leukemia, car crashes, starvation, plague, drive-by shootings—all take their toll at any age. You’re lucky you’ve survived this long.

It would have been logical to prepare for death earlier. And perhaps you have. Most of us would rather not acknowledge death’s presence in our lives until we must. We’d rather approach death as we did the old swimming hole or the diving board when we were children. Teeter on the brink, close our eyes, hold our nose, and jump. Robert Browning wrote, I would hate that death bandaged my eyes and forebore, and bade me creep past.¹ Many of us would choose precisely that. Hide me!

You won’t get the definite answer you want, such as You will die on Friday, November 17, at 6:22 A.M. So your next question is How can I make the most of my remaining time? For that there are abundant answers, depending on your physical capacities and how far along you are in the dying process.

Surprisingly, death, by its mere inescapable presence in our lives, has many gifts for us. Blessings, even. Carlos Castaneda’s teacher, Don Juan, tells us death is a black crow, just on the edge of vision over our left shoulder, an adviser reminding us of its presence.² You don’t have eternity, it says, in effect. Is this what you really want to do? Death’s presence guides our living in two ways:

1.It brings the gifts that the dying experience into our present lives. Why wait until the end-time?

2.It eases the dying passage itself.

When I set out to list all the ways in which preparing for death enriches our lives, even long before the final event, I was stunned to discover at least twenty-two. Twenty-two major gifts to the present from living within the context of future death! Here they are. Which would you do without?

1.Awareness of death makes us less fearful by desensitizing us to the idea. As a result, we grow bolder, take more risks. If you’re going to die in a year or two, why not sign up for that rafting trip down the roiling Colorado River or the expedition through the Amazon jungle? What do you have to lose? Life becomes more exhilarating, an adventure, as death surely is.

2.Because there’s less future, we live in the here and now, taking sensual pleasure in the small details of our lives. We delve deeper into the familiar, but we also appreciate the new: exotic people, foods, spices, smells, music, and art. We look and we really see. We listen and we really hear. Death’s imminence warns us not to mortgage the present to the future.

3.We cut down on musts and shoulds and do more of what we love. It is not that we no longer do things for others, rather that we choose our sacrifices with more deliberation and wisdom. We have been taught that any behavior that doesn’t benefit others is selfish, but if you play the piano for yourself alone, and you grow thereby, you take that happier, more fulfilled self out into the world.

4.We grow closer to friends and family, because we shall not always be together. Unexpectedly, we discover mutual thoughts and interests we never recognized. A soldier in a veteran’s hospital told his roommate he regretted not learning more about birds, Especially the mockingbird. Me, too, his companion said. I have an extra pair of binoculars. Let’s go!

5.The prospect of death encourages us to create meaning in our lives, that is, a sense of life’s pattern, coherence, purpose, and significance. If we need to do something to make life more meaningful, we still have time.

6.Often we regret broken relationships, petty cruelties, things not done. When death is our adviser, we have the time and opportunity to minimize regret. Also, when our relationships deepen and we do more of what we love, we regret less.

7.Because we regret less, create more meaningful lives, do more of what we love, and draw closer to friends, we have a better sense of who we are, a more fulfilled identity. Identity is like one of those yellow animal balloons that street clowns blow up for kids. First the trunk expands, and then, one by one, all those additional parts like ears, legs, and tail. Normally, the major part of your identity develops first, but other parts of you are ready to expand at the first opportunity.

8.Thus, oddly enough, the prospect of the future ending helps us solve many present problems, especially with people, work, and very specific personal longings.

9.We learn to prioritize our lives now, to delete the housecleaning and substitute throwing clay. Time becomes our ally, less of an enemy to beat, race, or even kill.

Can you see how the shift from limitless horizons to life boundaries focuses us on what is worthwhile? Just as the blanket swaddles the newborn so she will not fling out in all directions—a startle reflex—time swaddles us.

But there’s more.

10.All our lives, we work to transcend losses—of physical abilities, loved ones, homes, jobs, but also of hopes and dreams. Transcendence is a two-stage process: first we overcome the loss, and then we re-create our lives and our selves. Our home burns to the ground, and we must first grieve it and then rebuild. But sometimes we get stuck in loss. We know we are stuck when the loss is as raw today as it was years ago, when it is a major part of our identity, when I am a widow is the first thing we tell people about ourselves.

Death advises us, first, that nothing is ever ours forever and, second, that there are some losses, such as the death of a child, we will never get over. We must accept it as a new part of who we are. After we have done this, we can complete the third transcendence task, and that is to let the whole thing go, trusting that the person or thing we loved and lost is somewhere safe in the universe, or perhaps in the arms of God.

11.If there is someone we haven’t forgiven yet, or who hasn’t forgiven us, and if we believe that forgiveness will come on our deathbed (we may not), why not do it now? Then we will have all this precious time for joyful companionship.

Besides, death is unpredictable. While we’re mulling over that dramatic scene in our minds, the object of our wrathful affection has rolled over three times in a car on the interstate.

12.We’ve made horrible mistakes as parents, maligned a co-worker (she richly deserved it), and on occasion we’ve lied, cheated, or hurt someone’s feelings, and on and on. We might as well forgive ourselves now rather than wait until the last minute. If we believe in a forgiving God, we’ve already prayed to Him, and He’s forgiven us. Who are we to hold out?

13.There is more peace within us in our lives because we are forgiving, prioritizing, creating meaning, forgoing regret; we are less fearful, living in the here and now, doing what we love, becoming closer to others, and transcending loss.

14.We are more helpful to others who are dying, because we come from a more honest, more settled place of reflection on our own death. We’re less likely to shy away from the dying and bereaved who need our compassion and support. We can handle it.

15.Because we are learning and developing now rather than later, we have a longer period to teach others, particularly our children (although, admittedly, they may be less receptive to us while we are still in full bloom).

16.As I show throughout this book, the prospect of death prods us to resolve such conflicts as dependence versus independence, intimacy versus solitude, and control or order versus chaos. Death presses final solutions upon us.

17.We know from experience that rituals such as baptism, bar mitzvah, and weddings help us through life passages. Why not a ritual for our final passing? Now is also a good time to select wake, memorial, and burial arrangements, as well as the many details of these, such as music, readings, and food.

18.Explore the pros and cons of near-death experiences and various religious teachings as evidence for or against an afterlife. If you’re uncertain, take a position and stick with it, then plan accordingly.

19.Similarly, if you make decisions now about whether or not you want your life prolonged as much as possible, as well as practical arrangements concerning your will and the like, you will not have to do it later.

20.As we approach the end, many of us like to tell the story of who we were and what we did with our lives. We may want to correct the stories others tell, particularly in families, some less than flattering, some untrue, a product of the tellers’ agendas. We can begin that story or myth at any time, writing it down, taping it, or simply telling others.

21.Your metaphor is a very personal thing. It can be your image of yourself, or how an artist might paint you. It might be a stylization of your myth, or how your spirit might look if it were embodied, or you at your best, your idealized self, perhaps. For example, you, who you are at your deepest level, might ride a horse with flying mane across the night sky, or breast the ocean in sunlight, or become motes of music throughout the universe. Or you may think of yourself as a soldier in life’s wars. What image comes to mind? Working this out helps you live the rest of your life with deeper satisfaction.

22.All of