Die Wise: A Manifesto for Sanity and Soul

by Stephen Jenkinson

It desperately needs to be healed. We need to be healed. They—our Dead—need to be healed. The Living and The Dying are the ones who can and must start that healing. I have taken most of this book to try and give us the beginnings of a shared language and a shared understanding of what we all face in our time when dying makes its guaranteed appearance among us. To do so I have had to spend an awfully long time talking about what is wrong and how it has come to be that way. Now I think I can begin to talk about what we can do about it, and what we must do about it. How we are with our dying is how we are with our dead. Caring for The Dying is carrying the dead, when it is done well. That’s where we go next.

Learning wonders rather than accumulates. Learning wonders about the things we claim to know and about knowing at all. It wonders if knowing is all it is cracked up to be. Learning is subversive. What it asks you to pay in tuition is most of what you had thought was true, and what was necessary, and what was enduringly so. Especially it asks you to fork over most of what you thought you needed. To learn you have to trade in your comfort and your certainty for wonder, and wonder when it is fully employed and in good working order generally won’t let you build a new religion upon it.

I expect that if most of us really know we are going to die there should be some kind of indication in the way we live that we know this to be so.

Health budgets are making early discharges and home deaths a little more common than even a decade ago, and without much experience families are obliged to welcome home this loved one who has become a patient, a sedated

stranger, and care for them as best they can.

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.

So suffering well in a place that doesn’t believe in suffering means less suffering, controlled or contained suffering, suffering that doesn’t color everything else, barely visible suffering, suffering with manageable consequence that doesn’t include more suffering if possible. Competence is the opposite of struggle, in other words. Struggle in a place like ours is demeaning beyond a certain point, humiliating, beneath us, without merit. As the old joke goes, the definition of a schmuck is somebody who, when you ask how he’s doing, tells you.

We would swear off dying for as long as humanly possible, and a little longer, and employ every drug and medical procedure in the name of “less death for the dying.” And we do. This is what would happen to dying people in a place addicted to competence, that dying would be another exercise in not letting them see you sweat. And, mostly, it is. They have a drug for that too.

When do we let dying people off the meat hook of “trying”? When the symptoms gang up enough on them, become tangible and visible enough to break the positivist will of the most obdurate family member, that’s when. Far too often we require a fierce amount of overt suffering, manifest in mounting symptoms, before the idea of “enough already” is ever allowed a place in decision making.

It isn’t very likely that this collapse will come at a time that still allows for some clear thinking, or clear and heartfelt talk among the people who love each other, but it should. This is what I mean by courage. It takes a towering courage in the face of everything that passes for love and compassion and mental health to stop trying. It takes more courage still, or maybe a different, more discerning kind, to stop trying before someone is addled by symptoms and drugs and side effects and cold sweats and twenty-two hours a day in bed and night terrors about what is to become of him or her. Let us say aloud to each other here that being alive is habit-forming. Even when it doesn’t go particularly well, still most of us feel the draw of living, and we usually look toward the next new day. It isn’t an easy thing to feel otherwise. It is hard as hell, it is counterintuitive, and it is mandatory that when the time of dying is upon us we have to find a way to stop trying not to die.

“Remember how it went? Looking and looking for months, giving up more than once, your agent pleading with you to just look at this new listing, and you reluctantly driving over. And before you were in the front door you know this was It, the one you’d held out for. And you went from room to room with more excitement, and you were already half moved in, and you called your husband from the new kitchen and announced, ‘This is the one.’ And you brought him the next day, except this time you saw all the things you didn’t see the first time, all the little things that together made you wonder whether it was a good deal after all, and by the time you got home the deal was off, and no one knew what to do anymore, and you were both exhausted.” She nodded and remembered something like that. “If we had given you a mental competency exam that day, you would have failed the part that requires you to have a consistently expressed wish over time. You wouldn’t have been allowed to make any significant financial decisions because you failed the test. You wouldn’t have been allowed to buy the house anyway, no matter what you decided, because you were not capable of knowing what was best for you. You would have been a candidate for psychotherapy, and maybe for medication.” Here her eyes narrowed. “But nobody held you to that standard, because buying a house can make you nuts. You’d have been given the benefit of the doubt, and everyone would have looked the other way. You would have signed ...

Cancer is why people are dying, and palliative medicine is often how they are dying.

The purgatory to which people with “premature” wishes to die are admitted is the holding cell of depression. Antidepressants are almost as common as pain medication in the medical management of dying people. Physicians, counselors, and families are all unhinged when a dying person wants to die before they are able to. The considerable arsenal of medicine, psychology, and family familiarity are stymied and frozen when a dying person asks for help to die “before their time.”

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.

In the earlier story, the wife in a way needed her husband to be depressed. It explained his “mood,” his “outbursts,” his wish to die, and it gave everyone something to do: antidepressants, psychotherapy, chemotherapy.

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.

Acceptance is what you do to the weather when your parade is rained on; love is what you do to your children when they begin living a life that you haven’t lived and don’t understand. That is loving life, and praising life, and proceeding accordingly. Getting good at dying, for anyone involved in it, doesn’t mean that you are fine in spite of it all. It means to be wrecked on schedule. It means not wanting to die when you know you are dying. It means saying so. It means wanting more than anything for your loved one not to be dying and telling them this. It means missing people long before they die and telling them so. It means being sad with people, instead of “about” them. It

It is loyalty and a sign of deep love to want your loved one to die when he or she is dying, though it means that something of you will die with them. It is a deep love of being alive that finally helps a dying person want to die. For a long time, dying people are trying to live, and so they do. When the time comes, and the time always comes, the dying person must try to die, in hopes that they might do so. They must be allowed and encouraged and taught if need be to do so. They have to learn what “enough already” looks like, and usually that happens sometime after they get there. Anything that throws them off the scent of their dying must be challenged and made to earn its place alongside the deathbed, just as we all must earn our place alongside it. Greater love hath no man, woman, or child than that one who will love a loved one toward the ending of their days.

eating binds us to life, and each meal nails us to the wheel of the world, and dying people need more than anything else to be able to dissolve a little at a time what binds them to life, especially to the metabolic and physical life. When dying people stop eating they are voting “no” to keeping on. Often it is not even a decision. It is more as though the body’s own wisdom, its understanding of how to stop continuing, is announcing itself. It is a wisdom that is absolutely faithful and quietly resolute at the end of a person’s life. Dying is groping in a dark room for the door that will let you out, and stopping eating is like turning a knob to see if that’s the door.

It is a time for learning how to love our bodies not for what they might still do, but for what they have done and will do no longer.

It is a new way of loving our life, by obeying its way of ending. A love affair, in reverse.

Tell your spouse how it is to be inexplicably dying. If no one on the professional end has had the courage to tell you what is happening, then you be the one who decides what is happening. Then, faithfully report on your ebbing days, the sway of the disease, the unfamiliar absence of energy. Tell your spouse everything he or she doesn’t want to know or hear, and don’t wait to be asked, and don’t aim for acceptance or comfort. Aim at this: I’m going to give you something of your death now, through mine, so you’ll have something reliable when you get there, something of me. Let me love you that way. And if you’re the one people will designate as “the survivor,” the one who’ll write the obituary, you’ll have the harder road, friend. Always on the receiving end of news, status changes, test results, you will have to decide that you are in the time of dying, whether your spouse gets it or not, whether they agree or not. Here’s what you’ll have to say, more than once, to plant both of you in the time you’re in: “I don’t want to be too lonely before I have to be. I’m not going to sit with all this by myself waiting for you to be ready to talk about it. So, here goes. Tell me please what you think about when you look off into the distance, turned entirely inward. Likely I won’t have someone to ask me these things when it’s my turn. Tell me please, what is it to be dying? What should I learn now, to help me when it’s my turn?”

This isn’t approval anymore. What of this can be approved of anyway? This is loving the world anyhow. This is saying some kind of reluctant, hard-earned amen to the way it is, which is what all dying asks of us.

softening of the heart toward the hardness of life.

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.

We should now begin to help The Dying among us to learn how to die by helping them see more of it before it is their turn, by helping them to imagine it out loud without them having to worry about our feelings, especially by helping them grow their love of their lives and of us out past the old promises of staying with us and never leaving. Those

who will do so are those who cultivate the ability to be faithful witnesses, who are willing to learn how things must be even when—especially when—how it must be doesn’t include what they wish for. It is this ability that makes being useful to dying people possible.

On a good day this is a very demanding thing. It asks a lot of our humanity and our love of life to be willing to serve its end faithfully, to love life in t...

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. My

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.

There is real consequence in the poverty of language for our medical care, for the end of our family life, for the stories about us that are told after, for how those who love our dying selves themselves will die. Without that language, we cannot die well.

If you cannot say it, you cannot see it.

If you can’t say it, you can’t see it. Our ability to say something with the beauty and elegance of our own language carries our way of knowing that thing. Language is the way the thing is known to us. Language makes a continuity for our knowledge and gives us a way of acting on what we know. This is why the bard or the storyteller is in most every culture the one revered for his or her capacity with words.

The first thing they are forced to do is to choose between living and dying. The language makes them do that, because in normal speech these words are mutually exclusive, and so they can’t be doing both at the same time. “Living with a life-threatening illness” is an outsider’s language that is used to describe a kind of person that the outsider has never been, a kind of life that the outsider has never lived. “People living with a life-threatening illness” is the same kind of name, carrying the same kind of outsider language and uneasiness and prejudices. So is the phase “The Dying.” It means “them.” It means “not us.” Dying people soon learn that it means “not us.” That word—“us”—is a word that dying people cannot use anymore.

Dying people need to hear and speak a language that does justice and bears faithful witness to how dying is. They deserve that kind of language. It is their right. This isn’t a language of technical information, prognostic probabilities, and survival rates. It is a language in which dying people can recognize the realities of what they have been living covertly, probably for some considerable time before the tests and the office appointment confirmations of the worst-case scenarios. How else are they able to learn to speak as if what is happening is happening? Remember the grown son of the dying woman in the Maritimes, how he asked her to tell him what he didn’t know and what he needed to know? That’s what he was doing, trying to find a language. He was saying to his mother, “Tell me how to say it,” and she was saying to him, “I don’t have any way of saying it.” Without such a language there is no way of turning the corner from “if” to “when,” from “very sick” to “not going to get better,” from “going to die” to “dying.” Without such a language there is no way to have a shared understanding between dying people and those they love. There is no way to be sad together.

If we do not have a language for dying, we cannot see dying when it is present among us. That means that dying people are invisible to themselves and others as dying people, which proves usually to be chief among all the indignities that will be meted out to them during the course of their dying time.

Each of them needed a language that did not come from the cheerleading mantras of positive thinking or from the half-speak orthodoxy of self-help or from the guideless generic counsel talk of patient-centered care. They needed a language that testified to what was there to be known. They needed a language that didn’t come from cancer care, but from now, finally, beginning to die while in cancer care. They didn’t need another round of patient-centered care. They needed the recognizable beginning and the true language of dying-centered care.

They say that war’s first casualty is the truth. It certainly seems to be the first casualty of the war on cancer.

What gives you the right to be so indirect with people who are dying?”

When it comes to talking with people who are dying, or about them, obfuscation, obscuritanism, and euphemizing all take up enormous room in how we theorize and teach and practice palliative care, and yet these practices are rarely asked to pay their way. 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.

Dying is not getting the news that you are dying. It isn’t “getting the information.”

He knows that he is dying, and he doesn’t understand it.

It is possible—and in a death-phobic culture it is almost inevitable—to know this in some fashion and not allow the knowledge any consequence or meaning in how a life gets lived.

Tolstoy wrote that Ivan Ilyich suffered most from “the Lie,” and his book shows so well that one of the places that you die—that you know that you are dying—is in the eyes of another person who is willing to know that with you and not blink, who is willing to struggle with you in understanding this unprecedented thing by talking toward it. 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 ratt...

This then brings us to the question of how do you get ready to do something you desperately do not want to do? What are we asking of a dying person when we ask them to be ready before we begin speaking and behaving with them as if they are dying?

This “live like you were dying” stuff is shite, forgive me for saying so. This how people who will die but are not dying talk. This is what they imagine is possible, and it is what they want for others. It comes directly from that adolescent caper that most have been in on: If you found out that you had a week or a month to live, what would you do? Giddy excess is the almost universal reply. Dying people aren’t usually physically capable of extravagant excess, and they aren’t “living like they’re dying.” Mostly they are dying, and they don’t know how. They don’t have the words to say it. So 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.

That’s what seeing death can do, make you fall in love with being alive.

Childhood is killed off in the same fire in which personhood is forged: through a deliberate, orchestrated exposure to the smell, texture, and certainty of death, and in particular to the initiate’s own personal death.

Indigenous wisdom knows that learning how to love someone well means learning the inevitability of one of you leaving the other by dying. Love and death co-conspire. They fertilize each other, and become true only in each other’s presence.

Without that guidance and ceremony there is no wisdom that accrues to experience, and limit-defying adolescents remain adolescent well into their middle age, becoming fragile and remote, looking for someone who through love or sex or through the habit of coming home from work every night can perform the holy labor of saving them from loss, frailty, and death.