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Die Wise: A Manifesto for Sanity and Soul by Stephen Jenkinson

Die Wise does not offer seven steps for coping with death. It does not suggest ways to make dying easier. It pours no honey to make the medicine go down. Instead, with lyrical prose, deep wisdom, and stories from his two decades of working with dying people and their families, Stephen Jenkinson places death at the center of the page and asks us to behold it in all its painful beauty. Die Wise teaches the skills of dying, skills that have to be learned in the course of living deeply and well. Die Wise is for those who will fail to live forever.

Dying well, Jenkinson writes, is a right and responsibility of everyone. It is a moral, political, and spiritual obligation each person owes their ancestors and their heirs. It is not a lifestyle option. It is a birthright and a debt. Die Wise dreams such a dream, and plots such an uprising. How we die, how we care for dying people, and how we carry our dead- this work makes our village life, or breaks it.

• We are becoming a ghost cult. Ghosts because anything of weight tends to be consciously unwitnessed, or, if even suspected, resolutely shunned. We decide to un-witness.
• To stand well in this world you also have to learn to bend your head.
• A book about dying is a book awash in the great mystery of what is to become of us, and so it is a book about time. A book about dying should wonder again and over again whether the river of time and life flows toward the future and the not-yet and carries us there, as most of us are taught, or toward the past and the known, toward all who have been, as some of us suspect. The night of wonder must be a long one, and sometime before dawn it will come to this: When I die, am I past? Am I gone? Lost?
• Here’s what happens every day: The past has tangible presence and isn’t gone. People are born, and people die, and there are signs.
• Gratitude needs practice, though. Gratitude for the things that don’t seem to help, that aren’t sought out or welcome – that’s a demanding kind, and it is needed in hard times. A book about dying should have that kind of gratitude in it, bleeding through from the other side of sorrow.
• What if those people could stand on the shore watching their wake wash a bit of shore away? And what if each of us could stay put long enough to see the rippling trail of everything we did rolling out behind us? What if we stopped long enough to see the long train of unintended consequences fan out from every innocently intended thing we did?
• As a rule, nobody in our time asks you to do your life’s work. More often, at least in the early going, you have to do your life’s work as a self-appointed task. And in the early going you’re not very good at it, which can humbling. It is a learning thing, expensive, demanding, relentless.
• And so your life might go, as you quicken to your purpose: You get far enough into the sway of it to learn that you’ve been playing everything around the Rhythm, everything but the Rhythm itself, trying all the possibilities you found until all that’s left is to be told and played by the simple, ragged syncopation of your days. That’s when the Rhythm finally is able to have its way with you. That’s how finding what you were born to do seems to be, like answering at last someone who’s been calling your name faithfully for years. You play the rhythms and you learn the Rhythm, and you move accordingly: The ancestors of us all would have known that as the way of human being.) I have worked and taught for two decades in the death trade. During most of that time I was lucky enough to know a blessing when I saw it. I have sat with hundreds of dying people and their families and had the burdensome privilege of trying to help them die. I managed the counseling services of a very large urban palliative care program. I designed, launched, and directed a center for children’s grief and palliative care from scratch, and was assistant professor in a prominent medical school. I have taught in more conferences, workshops, and retreats than I wanted to. A major documentary film was made about my work in the death trade, and many tell me that it is a useful thing in a troubled time.
• I saw the death phobia that permeates our time brought to bear upon dying people in the name of caring for them. And I saw that as a culture we have a withered psychology of coping and accepting where we might once have had a mythology and a poetry of purposed, meaningful dying.
• I discovered that few wanted to die well, fewer still, wisely. Most didn’t want to die at all, and they spent their dying time refusing to do so.
• None of these stories report fact, but all of them are true.
• Facts happen once and typically fade and so have nominal use, I would say. But true thing are true because they happen and happen again, sometimes in heavily altered form, and so are a trustworthy signature of the Markers of Life.
• Dying is tough sledding, to be sure, and the stories of others who came before you can help.
• Dying hasn’t always been as crazed as it is now.
• DYING WISE IS A RIGHT OF EVERYONE. Most would agree, but the agreement means little until we are willing to proceed as if dying well is also a shared responsibility, binding upon us all.
• DYING WISE IS A MOREL OBLIGATION. Dying well is not a matter of enlightened self-interest or personal preference.
• Dying well must become an obligation that living people and dying people owe to each other and to those to come.
• DYING WISE A POLITICAL ACT. As soon as you begin to see how dying well challenges the old madness that passes for compassionate care and the orderly, meaning-free shuffle of a managed death, then you begin to know dying well as a great service and gift to those who are not yet dying. Dying well is the same kind of act as Gandhi’s cotton spinning or salt harvesting: a nonviolent insurrection that dares the status quo to oppose it or prevent it.
• Whose death is it, anyway? It is all of our deaths, one death at a time, until out time comes. It is one enduring place where we can declare what and who we are willing to be to each other.
• We can reclaim our way of dying and decide upon it, and we must do so now. We can take it from the hands of professionalization and privacy and legislated monopoly only by assuming the greater responsibility of learning about death during the course of our lives, and teaching it if we are able, and by being an exemplar, an incarnation of what we advocate when our time comes.
• DYING WISE IS AN ACT OF LOVE. It carries an abiding faith in life, it carries love for the world, and it asks that same faith and love of those who attend to it when it comes.
• DYING WISE IS SPIRITAUL ACTIVISM. It doesn’t require you to change your religion or get a religion or free yourself from one.
• DYING WISE IS IMMENSELY HARD LABOR. In a time and place that is death-phobic and grief-illiterate, dying well is mostly a sedated rumor.
• Dying is not what happens to you. Dying is what you do.
• DYING WISE IS A SUBVERSIVE, TROJAN HORSE KIND OF DEED. Dying well nails you to the wheel of the world. It binds you to your people, to your ancestry and to those who will come after you. Dying well loves life. How we die, and how we care for dying people, and how we carry the dead: Taken all together, this work makes our village life or breaks it. That much and more is at stake in every terminal diagnosis, at every deathbed, at every memorial service. Dying well subverts the confounded compassion of a death-phobic culture. The ending of our lives is the shore that the current of our lives laps up against.
• Those things that become our life get to be where they are and how they are because the things that are not our particular lives are still there enduring. Like rivers do, our lives find themselves by running alongside what will never be our lives, what will never happen, or what will always be. How we die is ripples in the river of life, little signs for others to come, that we die is the shore that the river of life obeys.
• Learn how to be a companion on someone else’s climb up the little mountain of their days.
• (1) THE ORDEAL OF A MANGED DEATH: What happens when we don’t let dying change everything.
• The way we die has been drawn up into that system so thoroughly that it is likely your grandparents wouldn’t recognize anything that will be routine care when it is your turn. High-tech health care has become an undeclared war on dying itself, nothing less.
• Cobalt and Courtesy: A few things to know about palliative medicine.
• Cost-effectiveness is the screw that turns the wheel of efficiency. But there is a considerable cost to pursuing cost-effectiveness. Here is the logarithm of progress: the more you pursue being saved from the drudgery of going through your days, the ordinariness of being around, the venality of physical limitation or vulnerability, the more is taken from the physical world to provide you that salvation and the more remote you will be from what grants you your security. That is an ecological and spiritual fact.
• Medical technology has a religion, and it is a religion. It has a foundational creed that grew out of its own success. The creed is a dead simple one, known by any and all who have availed themselves of its many gifts, its brevity and power of persuasion the envy of anyone who works in advertising. The creed is memorable, easy to translate into almost any walk of life that needs it – and almost every walk of life does. It is part commandment, past aphorism, part the plea of common sense, and taken altogether it is a kind of life you owe to your loved ones: If you can, you should. It is the unchallenged mantra of most large health care institutions, emphatically so in big city hospitals that have pride and fundraising staked on their status at the best, the brightest, the newest, and it is the plea on the lips of most scared, diagnosed patients and their loved ones: If you can, you should.
• Palliative care in North America has sponsored the replacement of religion by technology.
• The religion of medical technology goes like this: Dying is what we can do about dying. Palliative medicine is a creation of rapid med-tech innovation unaccompanied by any similarly rapid innovative practice wisdom guiding its use, governed by the unimpeachable human-centered conviction that dying is a manageable metabolic event that should be managed, animated by the root conviction that If you can, you should.
• Listen carefully to any dying person, and you will find in the early days of their that most fear above all else. This is their nightmare scenario: a resolute, intractable pain, swelling to a crescendo mainly at night when everyone who could do something about it is asleep, the solitary hell of a pain-filled solitude. So they welcome any promise, any attempt to control that pain and make it livable while they die.
• It turns out that more time is almost never its own reward.
• More time almost never looks or feels or goes the way people imagine it will when they are bargaining for it. More time bears no resemblance to anything most people have lived. More time is a fantasy of the resumption of life interrupted. But more time, when it finally kicks in, is the rest of a dying person’s life, and the rest of that life will be lived in the never-before-known shadow of the inevitability of their dying. For the first time in their lives they will live knowing that they will die from what afflicts them. Most referrals that came to me were for palliative patients who were “having difficulty adjusting to diagnosis,” but this was rarely an accurate understanding of what was going on. Their real difficulty was in adjusting to the consequences of having had their days extended. Their real affliction was almost always more time. More time means more time to live their dying.
• It isn’t pain, after all, that is unendurable. It isn’t living that is undoable. It is dying in a death=phobic time and place. The dying are obliged to live in a way they have never done before, and no life skill or old competence can be brought to bear.
• By being given more time, they have been given more death.
• He had bargained for months of illness and an hour of death, but instead got an eternity of wakeful agitated, motionless, unremarkable, endless, symptom-riddled, ordinary dying.
• More physicians are in the impossible position of defending, or at least acquiescing to, the longer death that their patients are living. More families caring for a dying loved one are at a loss about what they should wish for, and untold thousands have guilt years later that when it came to it they just wanted their loved one to die already, because no one could do it anymore. Instead of the old nightmare of controlled pain and unexpected wish to die, a wish that can’t be accounted for by worsening symptoms and can’t be soothed by reassurances that no one will be allowed to suffer. They are suffering. Dying people are suffering a torment we once thought would only come to those in the hour of their death. Now the hour of death is months long, sometimes longer. Now, in the middle of the more time that they prayed for, dying people more often than not cannot bear the answered prayer.
• Where I worked for several years there is a collection of large, formidable buildings running down both sides of a six-lane street for a block. Most people there know them to hospitals, but I know them to be temples. Their religion is quality of life, but their god is the demand to live. Demanding to live is the god they serve.
• In a culture that wakes up everyday demanding to live, dying is a failure, at least temporarily, of the way that culture lives. But the treatment of every new sick or disabled or broken or depressed or dying person is where the culture reaffirms its belief that a long, full life is the inalienable right of all.
• We also die the longest. We are not allowed to die on schedule. Often we do, but it isn’t encouraged. Our idea of what dying on schedule is like has been so skewed by the med-tech competence in distorting that schedule, funhouse mirror-style, that “natural death” is mostly a matter of opinion and personal style instead of a matter of dying.
• Obedience is following the grain of things. With that skill of obedience, every natural thing knows above all how to be itself, come what may. Dying is a natural thing, and left to its natural self each living thing know to obey the accumulation of time, wear and tear, disease and symptoms. It knows how to stop. But med-tech, not in any sense a natural thing, knows how to subvert the way disease and symptoms have of keeping and making time, and in doing so it subverts the body’s knowledge of how to stop.
• Waking up each day is a gift. It is a gift that is not rewarded for playing by the rules. It is a gift from the Gods, giving each living person the capacity not just to go on, but to go on as if he or she has been gifted, to go on in gratitude and wonder that all the things of the world that keep them alive have continued while they slept.
• STEALING MEANING FROM DYING: What it all has come to.
• Long life, quick death.
• Dying is gregarious and indiscriminate that way, promiscuous even, and it sets no one aside as unworthy and chooses no one out as more deserving, culpable, or defenseless.
• Dying wise is the rumor around which all the attempts to control and manage and detoxify and assuage and domesticate and diminish dying swirl in our corner of the world. Dying wise is a thought unthought – a rumor – in a culture that does not believe in dying, and it will take about as much courage and wisdom as you can manage to do it. Dying wise is a life’s work. Dying wise is the rhythm, the story, around which human life must swirl.
• A quick death in a death-phobic culture is really only possible when you don’t see it coming. That is the prerequisite for dying quickly, that you don’t know what is happening.
• If you have the chance as your life goes on to pass some time with old people, you should. Not with people who are getting old, but with those who got there.
• Rumi said somewhere that the eye is a miracle: small enough to fit easily in your smallish head, big enough that the whole world will fit into it. You really can see something of the whole world in the eyes of an old person.
• One of the things you’ll see, with respect, is that those eyes have seen the collapse, the withering, the end of a lot of things. They’ve seen the end of their old idea of a good time, the end of their spunk and their give-a-shit, and the end of their plans for what they would do with it if they had it, and the end of their vitality and of most of what they thought was vital. They’ve seen a lot of death of all kinds. They’ve seen the entire generation of their grandparents long ago go to ground, all of their parents, aunts, and uncles, all the people they were born to who welcomed them into the world and didn’t, who would show them the ropes and would not, die and end. They’ve seen most or all of the generation of their friends and enemies and peers and competitors buried and gone, and probably a good number of the generation younger than them, dead and no more. In all, a stunning pageant of the departed, all of it in there. Looking in their eyes, you’ll see what seeing death does.
• So the algebra of the thing comes to this: Long life and quick death, they don’t happen together. They aren’t peaceful cohabitants in the banquet hall of your life. You cannot have both and you will not.
• Somewhere in our knowing parts. We know without wanting to know it that knowing we could be dying somehow begins our dying.
• Most of what happens under the cloak of palliative care, unless someone calls an end to it, proceeds as if people have the right not to die and tries to deliver on that right.
• You being to die when you see your own death. Your own death.
• The verb “to palliate” is a good example. Most people who have heard or used the word understand it to mean something about the kind of care dying people receive, some kind of comfort-giving measures. “Palliate” comes from “pall,” whose Old English root means “cloak,” or “shroud,” borrowed in turn from the Latin for “robe,” which is ultimately from the Latin for “skin.” So when we palliate someone we are in one sense clothing them for protecting from the slings and arrows of how it is, and we are in another sense concealing things. This is what pall bearers are carrying, the death hidden in the box, shrouded by the flag. In a death-phobic culture, palliative care has come to be the kind of care motivated by compassion and concern that masks or conceals dying. This older meaning of the word is there whenever we have a discussion of whether and how a dying person should be told that he or she is dying. Usually this becomes an issue because there is a strong belief that knowing that you are dying increases the suffering are generated. This is one of our great, mobilized fears, and it prompts the cone of silence that descends whenever dying needs talking through. Somewhere in this fear is a shard of unwelcome certainty: We are fairly certain that dying is prompted not by knowing that we’re going to die, but by knowing we could be dying.
• I think that in a stranger and secret way we know that we begin dying when we see our death, when we suspect that is what is going on, no matter.
• The language we use every day wants us to know that dying is not passive, can’t be passive. Dying is active. Dying is not what happens to you. Dying is what you do.
• There are your choices: die or be killed. Either the cancer kills you or you battle cancer and win and carry the stain of your vulnerability the rest of your shadowed days as a survivor, or the cancerous broken heart kills you and the obituary they make for you begins this way: “After a long and courageous battle…” Or you die. Those are the choices. We should be able to tell the difference between dying and being killed.
• Everyone knows that everyone else is going to die. Generally, in my experience of the thing, the dismay of learning that your best friend or your beloved partner will die is dwarfed severely by the bolt from the blue shock of learning that you too will die.
• For most of us, our death is not a known thing. It is a rumored, suspected, and feared thing. That is why it is news.
• Everyone knows that everyone else is going to die. Each person does not know that he or she are going to die. They do not know they are dying when they are, which is why they need to be told. There are many working in the death trade today who will vehemently defend this not knowing as a fundamental right of all people. This is compassion to them.
• Because people do not know that they are going to die, because dying is what you do and not what happens to you – and only because of that – it is possible for people not to die. And many, many do not die.
• That’s what the singer was bargaining for when he sang, “I hope I die before I get old.” For a culture that doesn’t believe in death, that believes that everyone will die but shouldn’t have to, being killed is the solution to the problem of dying.
• However uncertainly, to the counterintuitive fact that for us it is possible not to die. Being killed is one way not to die. Not knowing you are dying – or will die – is another. Hating death or refusing to die are others.
• A death-phobic culture despises dying for the competence-reducing, control-dismissing, meaning-annihilating random chaos it makes of the end of someone’s life. A death-phobic culture relieves its citizens of any obligation to die well, of any obligation to death, by offering up this newer, nobler option: We can die not dying. And we call this a life-loving thing.
• Here, eat this. Eat the end of my days. Drink in my dying.
• Three essential questions:
• Why is it so hard to die?
• Why do we have to learn how to do it?
• Why, if dying is so common, is it so much a mysterious, troubling thing among us?
• Everything swings on the hinge of “and then.” You are willing to see your dying, and as soon as you do it can change how you understand your life. Your dying changes your eye, it changes what you see, and in that way your dying begins first in your seeing. Your dying changes what your life means.
• Dying changes what life means if you are willing for it to be so and only, if you are willing to pay, to lose your old ideas, often by handfuls at a time.
• Nothing naturally occurring in this world depends upon human beings for its life.
• Our capacity to live at all requires the interdependence of all those other things, and so our obligation to what gives us life is greater than that borne by any other living thing. Human life means what it means because of how life is, of which humans are a small and deeply obligated, dependent part. We are heirs to the meaning of life and not its creators, from an indigenous point of view.
• If nothing of the natural world needs our lives, then nothing needs our deaths either.
• All the deaths of all living things feed life; what does our death feed? All of life’s deaths mean that life continues; what does our death mean?
• Consider the last part of the phrase: “the End of Life.” When someone is dying it is the end of many things. Don’t listen to those placid detachment specialists who tell anyone who’ll listen, “It isn’t death, it isn’t an end, it’s a transition.” No friends, it is endings of all kinds, incontrovertible, non-negotiable, no matter what you believe. It ends marriages and families as they once were, workplace dynamics, headlines, plans for retirement, plans for childbearing, all manner of hopefulness, and on and on. But for all that, the dying of anyone, no matter how you might or might not feel about them, is not the End of Life. Most everything we can know about our life is ending as we die, that is a true thing, but life isn’t ending because we die.
• Med-tech turns dying into what is happening to your body, with you on the receiving end. With a med-tech hammer in hand, dying turns you into a victim and med-tech activates your defenses.
• In my years working in the death trade, I saw dying people constantly trying to find a way to live in spite of the fact that they were dying – not because of it.
• Imagine that everything that your life and your death mean is decided by how you live and die, while you live and die. Here’s a hint about how to get started: If the meaning of life isn’t necessarily anything at all, then try to imagine that you have to make meaning instead. Imagine that the meaning of things, especially of human things, is itself a made thing, and imagine that you can make meaning every day.
• If you haven’t been deliberately making meaning in your life by the ways you’ve lived it, then your time of dying is going to be a hard, hard proving ground, a tough, under-the-gun place to do so.
• Our culture is a death-phobic thing to die in, probably irrevocably so, and many of the unbidden, unexamined thoughts and feelings we have about ding come from there.
• Suffering, learning how to suffer, is how you make meaning from what seems random, chaotic, or pointless. This is what I mean by wrestling. Meaning comes from this kind of wrestling.
• What if your dying is an angel? And what if your dying job, should you choose to accept it, is to wrestle this angel of your dying instead of fighting it? What if you wrestle the angel of your dying life instead of fighting the executioner of your disease?
• Let the difference between the two unfold a little. Wrestling is a difference thing entirely. Wrestling has choreography. The purpose of dancing, or any choreographed thing, isn’t to get to the end, to have it be over, to resolve it, to let go, accept.
• Wrestling isn’t what happens to you. It is what you do.
• Living your way of life wrestles the way life has of being itself: That is how meaning is made.
• Terminal cancer is a true executioner, certainly, as are sudden accidents, heart attacks, political assassins, and famines. These are things we die of, things over which we have little or no say.
• Question, “How do we die?” They tell us nothing about why. Cancer may be your executioner, but the news of your dying is your angel, or could be if you are willing. You fight your executioner by chemotherapy and radiation and good nutrition, and properly so, but you wrestle the angel of your dying by grief and wonder and sorrow and somehow in spite of any example or counsel around you by choosing the meaning for your dying time. By the manner of how you live your dying you will start answering the question, “Why do we die?” And that is how we will change what dying has come to mean to us.
• If you wrestle death, your labor makes a proper place for it. If you fight death, there is no place for it. Death is defeat, the end of life. Demonize death and you turn life into a factory-farm canola field: flat, hollowness, no place for mysterious things of substance to gather. But come to your death as an angel to wrestle instead of an executioner to fight or flee from and you turn your dying into a question instead of an edict: What shall my life mean? What shall my time of dying be for? What is it going to be like, that cottage of darkness? If you work hard in your dying days, the answer could be, “Not like anything you’ve known.” Dying turns into something you live. The trick here is that to be able to ask questions like that you have to know, somewhere in your bones, that you will die. When the time comes, you have to know that you are dying. That shift from the future tense to the present is a chasm that many people these days never cross, never even see.
• 3: THE TYRANT HOPE
• The capacity for wonder might be something we share with everything that is holy, and something that is easily and early forsaken by people and times where technique and information are boss. Wonder is part fascination, part ability to believe in things as they are, part willingness to be confused, even devastated at times, by the epic mysteriousness of ordinary things.
• Wonder is the sum of life’s way of being itself, washing up on the shore of what you’ve known until now, leaving handfuls of treasure scattered among the small boulder of what you were sure of.
• Information is where wonder often goes to die.
• The greatness of a great question is that it can survive any and all answering, and still be left standing after the debates and harangues and rationalist assaults have bashed away at it. There are no great answers, you could say, but only great questions made greater when their answerers are nobly defeated by the awe and mystery of the way things are. Great questions are not problems to solve any more than great feasts are problems for stomachs to solve.
• Great questions are a proper throne for wonder, and there is much in our life that needs our wonder, and deserves it, just as we ourselves deserve the capacity for wonder that came to us early on but does not often survive our education.
• Hope is the soap of palliative care, in a way. Hope is often the tower of sand where most dying people live out their days, staring through a small window down onto the fields of the longed-after things that will come no closer and the hated and feared things that will gather there instead. Hope is the siren song of anyone who loves a dying person, the conjuring chant taken up in the name of compassion. The preservation of hope is the base element in any plan made for dying people by the people paid to care for them. It is the root condition for proceeding. That is the conviction of most of us, dying or not. Hope is life loving, and it cannot be otherwise. Without hope, they say, what’s the point? And it’s always a rhetorical question.
• What claims you in the times in between life’s “got tos” and “going tos.” Someone you don’t know asks what you’re thinking about most of the time, and you may have to think long and hard to figure out what it is.
• Sometimes you have to wonder aloud whether hope is all it is cracked up to be and wait for the pieces to fall. Maybe you’ll get to be there when they fall.
• Hope is a mortgage. It is not like a mortgage. It is a mortgage. Hope is a mortgaging of the present, for the sake of some possible future that might come to pass and just as likely might not. Being a hopeful person with a terminal diagnosis means that, like those doctors in the study, you are in some mysterious and compelling way not allowed to know what you know when you are dying. In a death-phobic culture like our own, knowing you are dying is not as healthy as hoping you aren’t dying while you are.
• As long as you are hopeful, you are never in the land you hope for. If you bargain for More Time, you never live in the land you hope for. If more time is spent bargaining or praying or hoping for More Time. No one seems to hope for what they have, and hopeful dying people rarely get the More Time they hope for, no matter how much More Time they get.
• What you want rarely looks like what you get, but it almost never looks that way to hopeful dying people.
• Your More Life, it turns out, includes More Death, a lot More Death than you ever imagined could be in one life. As you try to live this thing that was to be its own fine reward, you find that More Life is mostly More Death. They were quick to offer you chemotherapy or radiation for your More Life, but there aren’t many offers teaching you how to have More Death.
• Hope is contagious, and it is to me a kind of obscenity at a time like that. Hope is an anesthetic of the spirit.
• Hope almost always makes sure that it is too late to learn how to die for dying people in a death-phobic culture. That is what it does to them. Turning away from learning how to die well in the name of being hopeful, dying people consume probably as many antidepressants and as much antianxiety medication as do late-middle-aged people who have lost whatever they once had of a feel for what they are alive.
• Dying is traumatizing when it is happening in a place and time that will not make room for dying in its way of living. It is not dying that is traumatic; it is dying in a death-phobic culture that is traumatic.
• Cope, Hope, Dope, the trivializing trinity, the barstool for dying people to teeter on in a place that will not tolerate death.
• So, a culture that sells hope to dying people is selling them anesthesia and management. Hope, as much as anything else and more than most, traumatizes people at the end of their lives.
• In a death-phobic culture, dying is not a credible outcome: Dying is giving up, and hope is refusing to give up. In the health care system of a death-phobic culture, dying is where the health care ends because dying has no place in any understanding of health.
• “Hope” is not life, and “hopeless” is not death and depression. Hope is very often a refusal to know what is so, and steadfastly it is a refusal to live as if the present moment is good enough and all we really have. Hopeless is the collapse of that refusal, and it looks a lot like depression. The alternative is to live your life and your dying hope-free.
• Living and dying hope-free: that is a revolution. The chance to die that way is what dying people deserve.
• 4: THE QUALITY OF LIFE
• In a land where lifestyle is lord of the manor, Quality of Life is where you go to pray. It’s the stone you kiss, the pocketed coin you rub, the chant, the rosary you finger, the selfless self of your self-interest, and the least on a long list of your entitlements.
• Quality of Life enjoys an unchallenged seat in the small pantheon of goals that professional caregivers devote themselves to providing to dying people. Quality of Life is a known thing to dying people themselves, at least the idea of it.
• Quality of Life is the definition of a good death in a culture that sees little or no good in it.
• The selling of Quality of Life at the end of people’s lives is a kind of methadone approach to the dilemmas of dying. The belief that somehow we are in control of our lives as long we agree with how they are going along is the profoundest of illusions, just as is the belief that things go haywire because we are no longer controlling our lives.
• Quality of Life is competence addiction. It is a competence junkie’s solution for the addiction to competence, a gesture of impotence tarted up as an accomplishment. Quality of Life sells you control and mastery and competence in the face of something so singular, so personal, and so incontrovertible as Your Own Death because Your Own Death is the largest and latest and last incarnation of what beggars your instance on control and mastery and competence.
• 5: YES, BUT NOT LIKE THIS: Euthanasia and Suicide
• Here and now, where the business of dying is the Business of Not Dying, where history is written by the victors and the victors are Survivors, where only their stories are told by people who want only winners for inspiration when their time comes, dying is probably harder than it has ever been.
• We have bargained for forty years for painless dying, we have spent and are still spending billions on the bargain, and we have something pretty close: pain-managed dying.
• Many families are now being asked to unplug the machine giving nourishment or breath to someone they love in the name of loving them. This is the same machine whose use they were asked to consent to some time before that moment, in the name of loving them.
• Our interventions are so extreme that we cannot find where one ends and the other begins.
• Palliative medicine routinely interferes with the natural course of disease, and in so doing it generates an often predictable series of secondary consequences or side effects. The subsequent need for drugs produces other side effects and the need for more drugs, and so on to the end. This means that palliative medicine is generally the practice of managing the consequences of palliative medicine while trying to keep an eye on the often volatile disease by reading the tea leaves of symptoms – an extraordinarily demanding job. It also means that the way a person dies in palliative care, the arc of the dying, doesn’t bear much resemblance to what the arc might have been had there been little or no curative or palliative care afforded them.
• Terminal sedation and profound mental anguish at the end of life are both symptoms of a culture addicted to competence and comfort, a culture unable to make room in its way of doing things for what it doesn’t get to vote on.
• “Profound mental anguish at the end of life” is prose for “heartbrokenness,” you see. Dying people, most of them in my experience, are heartbroken people who don’t know any longer, if they ever knew, how to be heartbroken. Their hearts were broken by the news of their disease and by how their citizenship in the Land of the Living slipped a little at a time without them having a vote on whether or how that would happen. Their hearts were broken by the treatment options offered to them and by the outcomes of those treatments. They were broken by the confusion, turmoil, and quiet distance-making that befell their families, and they were broken by their own lives having come this. The answer a death-phobic culture has to the heartbrokenness of dying people is less heart, less brokenness. That is what sedation and antidepressants are designed for, to compromise dying people’s capacity to suffer. This compromise is their great victory, to ratchet down suffering by compromising someone’s capacity to suffer.
• Euthanasia is not sanity in the face of madness. It is our particular madness’s prescription for sanity. The practice of euthanasia solves the problem of a particular dying person’s refusal or inability to go on, but it leaves intact what brought that person to that impasse, ensuring that others will follow. Opposing euthanasia legally and politically does the same thing. The wisdom we seek by advocating for euthanasia is found instead in learning about suffering.
• 6: THE WORK
• Probably a third of all the palliative care organizations inviting me to speak with them ask me to focus on how their employees might survive doing the work. The request is never explicitly for a survival strategy, of course. They ask for suggestions on how to do the work in a sustainable way, for example, or for guidance on how to achieve and program what is now called “care for the caregiver.” But if you listen carefully with your ear attuned particularly to what is not said, you can hear clearly the plea for some kind of hint on how to keep on going despite—not because of—what the work is doing to the people doing the work.
• Certainly early on in the palliative treatment phase of dying peoples’ illnesses they report that being in pain is by far their greatest fear. Drugs and the acquired skill of pain control by physicians have gone far to guarantee that most people will not die addled by pain, but it hasn’t delivered sorrow-free or suffering-free dying.
• I once heard a brilliant teacher say, “Suffering is the currency of stinginess.”
• So many people I worked with died with the grudge of being owed something by life that they now won’t live to collect on. Their deaths were a theft and betrayal and rip-off for them, and their families and friends and communities all inherited the poverty, the stinginess, of that belligerent wound.
• “Remembered happiness is agony,” wrote the American poet Donald Hall in the wake of his wife’s death. “So is remembered agony.”
• Most of the solutions we have for people’s suffering at the end of their lives are rooted in a grudge match with life and with the body. They serve the conviction that people shouldn’t have to suffer, and so the headlong pursuit is for an end to suffering. When this pursuit fails, and it almost always does, the next best solution is to limit or end the awareness of suffering, by resorting to antidepressants and sedatives. We should stop long enough to ask one of the dumb, simple questions that are gold at a time like this: Will—not should— will our people inevitably suffer as their lives end? If we answer “Yes,” then we need a second question: Are they suffering because they are dying? If we answer “Yes,” this is reflex and not contemplation.
• dying people are suffering from the manner of their dying.
• Usually any focus on or serious understanding of dying is sacrificed in order to pursue and secure comfort. All of this usually happens with the active cooperation of the dying person. The value of comfort is never challenged. Comfort is never asked to earn its keep. It is a kept thing.
• But what in our lives does dying resemble, really? What does it actually remind you of? Nothing whatsoever, is the only honest answer. Dying is so singular, so relentlessly itself and nothing else that we can be comforted in its presence only by conspiring together to cover it with the husks of those former mysteries that we have succeeded in demystifying.
• Their diagnosis drove an insoluble wedge between you, and they stumbled out onto this path unawares and against their will, and they’ve been on it for some time before your offer to accompany them. That diagnosis is the irreducible distance between you. You’ll never be older than your older sibling, and you’ll never be journeying beside a dying person on the road to their death, no more than a midwife is journeying with a not-yet-born person in the full grip of contractions.
• that knowing they are dying is itself a cause of suffering.
• Dying as a human being is a human thing.
• 7: SO WHO ARE THE DYING TO YOU? WHO ARE THE DEAD?
• They say that fear of dying is in the culture because of what is missing from the culture. They say too that fear of dying has become so pervasive that it is in the fabric of daily life.
• Death phobia begins to metastasize whenever our ability to make culture, to be deeply at home in our skin and in the world, has gone missing.
• Rumi asked eight centuries ago: “Who am I? And what am I supposed to be doing?”
• Whenever you go looking for home, you will find death on the welcome mat.
• The therapy solution is the acceptance that her father is well and truly gone, and it is achieved by beginning to live as if he is well and truly gone. All that was left of him by that night was how she felt about him. All of this is driven by the language of “loss,” and loss means “gone,” and gone means “you’re on your own, baby.” The woman in that hall that night was on her own too. She didn’t lose her father by her own neglect, treachery, or Electra complex. She inherited the program of losing the dead as a psychological obligation to her own restored mental health.
• For most of us grief is entirely an interior event, exclusively emotional, cathartic in purpose and resolving in outcome, the dead a prop in the pageant of our recovery.
• Most people die awash unawares in a grief that is much older, more enduring, more trustworthy than anything else they might regret or resent in their last months or days.
• Just like the child whose parents have parted, cultures in flight have to radically alter their idea of home, and they do. For them home is a place no longer; it is a state of mind. The internalization of “home” is a hallmark of homeless culture.
• Ancestors are notions, mostly, and are no more in need of being fed and cared for by the living than the old bone yard is. The homeland and the old people: both remote, both adrift, both unnecessary. The dead are those about whom you have the odd thought, to whom you owe nothing but a vague gratitude when it stirs, gone with the wind.
• Once this has gone on for a few generations, the only place you have any allegiance to is the place you pay a mortgage on. The world—not itself a real home for anything or anyone—needs nothing from you. It is only a place that you go to get your dietary, recreational, and lifestyle needs met. Sounds familiar, doesn’t it? The dead are a place inside you that you go to for solace or self-assurance. There is no reciprocity of obligation because there’s nobody there. The ritual and ceremony of caring for ancestors, if it happens at all, if we can even any longer use that expression, is mostly an interior event, a symbolic exercise that can be done anywhere, anytime.
• The outcome for the living and for the world is palpable, and evidence of it abounds now. The outcome for the dead is, mostly, unknown to us.
• Prior to that exile, life was eternal; after the banishment, humans are frail and murderous—and mortal. The natural disasters will come later, well after losing the garden. The first calamity visited on humans comes from God, the second humans inflict on each other. The loss of home, the story says, is the beginning of death. That is how human death comes into human life, in humans being driven from home.
• 8: DYING FACING HOME
• Dying is mostly seeking, running your hands across unfamiliar things, not being able to see them but feeling them clearly and knowing certainly that they are there, trying to figure out what is at hand.
• Our bodies know how to die, but we have little or no idea how anything of us could survive the amnesia that seems built into our history and our memorial practices.
• Our fear of dying is an inherited trauma. It comes from not knowing how to be at home in the world. It comes from having no root in the world and no indebtedness to what has gone before us.
• 9: WHAT DYING ASKS OF US ALL
• So learning is first and foremost hard labor for human beings—a very noble hard labor.
• Dying and death are witnessed by the living from a long way off. Dying people are handled mostly by the robotic arms of health care systems and treatment protocols and professionalized competence, and not too often by the people who have grown up around them and love them and know them well. Instead of hard-earned wisdom about dying and what it asks of us all that comes from a lifetime of seeing it and smelling it and being a faithful witness to it and grieving it, we have premature opinions galore about dying that come mostly from rumors and horror stories and undigested compilations of Native spirituality or Eastern mysticism. We have massive technical sophistication for managing The Dying and a serious mythic poverty in knowing dying, and most of us stagger under this irony. How we are with our dying and with our dead, and how we ourselves are likely to die, is the sum of what we haven’t seen and haven’t touched and don’t know much about. That is the meaning that we now often find at the end of our lives: a hole, a crater, where our life and our skill of living used to be.
• When other people, especially grandparents and others that were deeply cared for, begin to die around them it is news of the hard kind and it hurts, but it happens “out there,” to their bodies, to their lives. Someone else’s death rarely brushes up against our own. The fact that most of us don’t plan on it, don’t see much of it, don’t live as if it is true, are staggered by it—that is all the proof you are likely to receive or require that your own personal death will come to you out of the blue, where all the news comes from.
• Ours is a competence-addicted culture, and savagely so. I know it sounds strange to put these two words together, since competence by definition is supposed to be a good thing to be, and being “addicted” is far from that, but there it is. We all know the mantras: Be all you can be. Maximize your potential. Your only limitation is your imagination. Just do it. Do you see how fierce it is, the intense aversion so many have to being ordinary or average? Remember how you were graded in school not according to how well you did but in relation to how well or badly everyone else did? The Holy Percentile.
• When the time of dying is upon us we have to find a way to stop trying not to die.
• How strange it is for me to have lived long enough to see a time in which people are tranquilized for trying to do what they are already doing. “I’m dying.” Don’t be negative. “I want to die.” You’re depressed.
• Most dying people are enormously sad, and they need help in being sad. They don’t require a diagnosis. The inability to be sad when it’s time to be sad —not too much sadness for too long—is something that can depress people. When being sad is hurried through on the royal road to acceptance it is one of the hardest of dying people’s tasks. The antidote for depression is sadness, and it is sadness that must be taught. To be heartbroken isn’t a diagnosis. It’s a skill.
• People not being able to die: That is the nightmare. People wanting to die in the presence of the technological sophistication that obliges people to live: That is the nightmare. All of the debates on euthanasia and suicide, all of the debates on the rights of the disabled, all of the medical ethics reviews and discussions, they all have to contend with this nightmare, with its ethology and its effects and how they are visited on The Dying, and I wish they would. Dying people as a rule are not traumatized by dying, but, like Lazarus, by having to do it and do it again.
• Trying to die wisely and well is a kind of divination.
• The dying person doesn’t need any strength to die. Physical strength makes dying harder, enormously more difficult than it would otherwise be. With dying, as with living, there is such a thing as “enough already.” There comes a time when the future has nothing worth wanting or hoping for, and dying people can no longer vote for any future. When they stop eating, they are voting “no.”
• And it is a time for doing all this to the relationships that we have nurtured over the years. Dying people find their way out of life by easing, softening what has bound them to those they know and love. The living often feel abandoned when The Dying stop looking to them and begin to look through them. It is the heavy labor of the dying person to follow the body’s wisdom and loosen the ties that bind. It is not the opposite of a love affair, not its annihilation. It is a new way of loving our life, by obeying its way of ending. A love affair, in reverse.
• As dying people are trying to find their way out of their bodies and out of their lives, the job of the living is to know how hard that is and to get out of their way. Dying is enormously hard. The labor of it—and it is labor, of the same kind as that which brings life into the world—is relentless, demanding. The shock of having to see your days as numbered in the dozens, of seeing your body heading out of town, of seeing yourself as mostly passed, these are in some ways ruinous and costly encounters with the way it is.
• This is what we need in the presence of life dying, the willingness to feel that dying right in our bones when it isn’t our turn to die, to be a faithful witness to how things can go, to the part we play in them and should, to know the old stories that include life dying so that life can live, until it is our turn. Maybe then our dying life might feed the life that must go on, after us.
• When a hard time is upon us, being hard is not required. Being supple in your understanding, keeping your willingness close to your memories and your skills, asking your eyes to stay open and wondering what is needed of you in that time is some of what is required. Whatever side of dying we are on, being willing to see things for what they ask of us is something to work at. That is a human skill.
• The practice of “directness,” which to me is a practice of fidelity and authentic witness to the contending truths of dying in a death-phobic time and place, is regularly challenged and sometimes vilified, and the practice of weaving and reweaving the pall stands for compassion and passes without comment.
• Remember the dream you have probably had where you are the only one who seems to see the impending mayhem, and try as you might you cannot get the others in your dream to turn around and see the thing? Remember the raw panic of being the only one who knows something is coming, while everyone else carries on as usual? Now imagine lying in what you have grown sure is your deathbed, with everyone around you speaking and acting as if you are ill, or as if not much has changed when it has. Imagine the power of that to rattle you beyond measure and to make you wonder if you know what you know, and to make you question your sanity. Imagine the power of it to make you disappear. Solemn lying, whatever its motivation, has to answer for itself.
• We could work toward a day when you ask a dying person, “So, how are you doing?” and the dying person says, “I’m dying. How are you?” Just as a start.
• 10: KIDS
• What is true is that you will die. It has always been true, but initiation turns dying from a feared thing into a known thing. This is the sanest reversal imaginable of our insistence that knowing you will die is the thing that will traumatize you and cause you suffering. This understanding stubbornly insists on knowing the real limits to one’s life. It gives initiated people some skill at suffering by making the stories of their lives and deaths purposeful stories, and it starts early in life. The news of your death brings the rest of your life toward you, it forges kinship to go along with identity, and it is news that young people deserve as a part of their adolescence.
• We could make our way of dying into our way of person making. Every death that precedes our own could be our school, our initiation hut, every dying person and every witness our fierce teacher. Our own death could be that for everyone who attends it and hears about it, if it is messy enough to give everybody lots to do.
• My heart is broken. I never want it to mend.
• Most everyone prays for their heart to mend, to get on with their lives, to have no broken heart at all, a grief-free or grief-contained life.
• The only presence you can have after death is that which the living grant to you.
• Is grief something that happens to you, or is grief something you do?
• Grief has to be learned, which means it has to be taught. Which means it is possible not to learn it. When we keep insisting on grief being a feeling, or a process that needs management and closure, we are talking about grief as an affliction, the same way we talk about dying. But something changes when we start seeing grief as a skill that needs learning, which is what it is. As a culture we are grief-impaired not because we don’t have what we need to feel bad, but because we are grief-illiterate. We aren’t taught to grieve; we are taught to handle grief, to resolve grief, to get on the other side of it. We need grief teachers and practitioners, not grief counselors, until the day dawns when they’ve become the same thing.
• Life doesn’t feed on life. Life doesn’t nourish life. Death feeds life.
• Every rooted thing knows that and proceeds accordingly. Death is the life-giving thing. That is the proposition that life offers, that grief endorses. Everything dear to you will perish so that life might continue. Our deaths can, in every sense the word can be meant, feed life—unless we refuse to die, or fight dying, or curse dying, or spend all our dying time not dying. When we do that we exempt ourselves from the biodynamic imperative and the great caravan of how it is.
• Grief is what you do with what comes to you.
• Grief is a way of loving what has slipped from view. Love is a way of grieving that which has not yet done so. We would do well to say this aloud for many days, to help get it learned: Grief is a way of loving, love is a way of grieving. They need each other in order to be themselves.
• People die in the manner of their living.
• Most people die awash unawares in a grief that is much older, more enduring, more trustworthy than anything else they might regret or resent in their last months or days.
• Just like the child whose parents have parted, cultures in flight have to radically alter their idea of home, and they do. For them home is a place no longer; it is a state of mind. The internalization of “home” is a hallmark of homeless culture.