In “Die Wise” palliative care worker Stephen Jenkinson explores western society’s relationship with death. Much of our fear of death comes from living in a death-phobic culture and not knowing how to hold space for the dying. Written with profound poetic prose this “manifesto for sanity & Soul” can teach us all how to live better and die wiser.
*All sentences in quotations are direct quotes from “Die Wise” and are attributed to Stephen Jenkinson. Bold is added for skimmability.
A death-phobic Culture’s View of Death
- “Most of the physical, emotional, social, spiritual, even political challenges and limitations inherent in the experience of dying are met with an approach that is usually called “Management of…” “Control of….””
- “High-tech health care has become an undeclared war on dying itself, nothing less.”
- “Medical practitioners without specific training in what is called psychosocial and spiritual care of dying people are inclined to keep dying simple and physical.”
- “We know without wanting to know it that knowing we could be dying somehow begins our dying. And that is where the most lunatic of all the lunatic ideas this culture harbors about death is born: that you have a right not to know that you are dying, or that you will die.”
- “It isn’t dying that really kills you, in other words; it is knowing that you are dying. Knowing, for a culture like ours, is where the real pain and suffering are generated.”
- “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.”
- “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.”
- “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.”
- “The hospitalization of dying people happens not usually because the symptoms are too complicated to manage at home but because the family members feel overwhelmed. They can’t afford to let dying change their lives.”
- “Many funeral directors have turned themselves into event planners for a ceremonially impoverished clientele, but this may not signal a change of conscience on their part.”
- “There isn’t a drug, a surgical procedure, a medical appliance, a profession, or conceptual counseling language used to deliver palliative care these days that derives from the physical, social, intellectual, or spiritual realities of dying.”
- “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.”
- “The culture gives us our ways of dying, gives us the meanings and meaninglessnesses we wring from it, forcing upon us the repertoire for dying.
- “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.”
- “When people say “Well, everybody’s going to die,” nothing much happens. And this is the great poverty of our common days, that when the story of the ending of our days is told, nothing seems to happen. But it should. Something should happen.”
What is Dying
- “Dying is not what happens to you. Dying is what you do.”
- “You begin to die when you see your own death.”
- “You cannot use the verb “to die” in the passive voice in a sentence and obey the rules of grammar and the style manuals.”
- “The language we use every day wants us to know that dying is not passive, can’t be passive.”
- “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.”
- “You won’t change what dying means by fighting it. It will always mean “loss”.
Misconceptions on Death & Dying
- Dying people are very often entirely mistaken about what they fear most. It is not the pain. It never was the pain. The more energetic and resilient fear by far that I have seen is the fear that the rest of us, the living, will after some time and adjustment be able to live our lives, that the end of the dying person’s life doesn’t end much else after all, that the living will continue to be the living and be able to proceed as if the dying person is past, done, over, and some weight as if that person I’ve never really, enduringly, been.
- 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.
- “More time almost never looks or feels or goes the way people imagine it will when they are bargaining for it.”
- “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.”
- “Good death is quick death. A quick death in a death-phobic culture is really only possible when you don’t see it coming.”
- “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.”
- “The dead are a place inside you that you go for solace or self-assurance.”
Why We Struggle to Accept Death (hope, expectations & control)
- “I have seen “Waking up expecting to live” every day on the job, and I’ve seen what it does to us. I have seen that there is a diminished ability to suffer. There is a little instinct or capacity for grieving. There is a headlong flight away from discomfort, hardship, dying.”
- “There is every possibility that waking up each day expecting to live and the widespread depression we know is here are connected, that one has some role in causing or contributing to the other.”
- “Expecting to live is training wheels on the spaceship of our entitlement.”
- When you worship in the Temple of Want your death is an insult, the ultimate, arbitrary frustration of your right to have things go as you deserve until you decide otherwise.”
- “Many people die with the grudge of being owed something by life that they now won’t live to collect on.”
- “Hope is a mortgage. It is not like a mortgage: It is a mortgage. Hope is mortgaging of the present, for the sake of some possible future that might come to pass and just as likely might not.”
- “The belief that somehow we are in control of our lives as long as we agree with how they are going along is the profoundest illusion, just as is the belief that things go haywire because we are no longer controlling our lives.”
- “It is harder to die now, with all of our medical pain and symptom solutions and psychological technologies and New Age affirmations, than it has ever been.”
- “Someone else’s death rarely brushes up against our own.”
- The pervasive fear of dying in the adult population of North America doesn’t come from seeing more dying as people get older. It comes, partly, from seeing not much dying or much death at all as they get older.
- “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.”
- “Uninitiated people do not believe in dying, just as they disbelieve in anything that limits their choices and self-direction and comfort seeking.
Initiation into Death & Dying
- “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.”
- “Uninitiated young people look the part of human beings, to some degree, but they are capable of treachery, self-harm, and intoxicating self-absorption in the name of a self-appointed and unguided search for “personal identity.””
- “Indigenous wisdom knows that learning how to love someone well means learning the inevitability of one of you leaving the other by dying.
- 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.
- We could make our way of dying into our way of person making.
Meaning & Death
- “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.”
- “The crucible for meaning in your life is how you wrestle with the way things are”
- “When the going gets tough, some kind of God is going to emerge where your agnosticism used to be.”
- “Change “fighting for your life” into “wrestling life for the meaning of your life,” and you can feel the shift of possibility.
Suffering, Sorrow & Grief
- “Suffering, learning how to suffer, is how you make meaning from what seems random, chaotic, or pointless.”
- “Suffering for most of us comes from not getting what we need and from not needing what we get.”
- We cannot, though nothing seems compelling enough to make us see it, contain, control, limit, treat, anesthetize, or analyze that suffering to the point where dying people do not suffer it, and our continued impoverished take on what is happening when dying people suffer deepens and extends their suffering.
- “Hurt has to find its words as well as its voice. Hurt has to speak its name and find a language that does justice to what has been seen and endured.”
- “The human heart was built to break, and that feeling that heartbreak each time is remembering again the deep things of life that need remembering.”
- “There is no such thing as knowing how to be heartbroken. You cannot treat heartbrokenness or suffering, nor can you manage them nor contain them nor make them less of what they are or must be. You make a place for them, just as you make a place for the things in life that you bargain for and benefit from and approve of. “Making a place for them” means inviting human sorrow to the table as you would any unexpectedly appearing at your door at mealtime.
- “Dying people are heart-broken because they are dying, surely, but much more so because they are our dying people, dying among us in a place that doesn’t believe in what is happening to them, in a place that doesn’t know what to do in the wake of what it has done, in a place bereft of the deep courtesy of the heart in times of trouble.”
- “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.”
- “We have all this inherited content about what grief is, but very little wisdom about what grief is for.”
- “Is grief something that happens to you, or is grief something you do?”
- “Grief is not a felt thing at all, though we seem to have many feelings about it. This is what sorrow, depression, loss, and the rest are — descriptions of the inner experience and what they mean for us — that’s why we have distinct words for them.”
- “Grief is not a synonym for those things, nor is it what happens to you when you feel all those things for too long.”
- “Grief doesn’t come from nowhere, an intrusion into the natural order of things. It is the natural order of things. Grief is a recognition of how it is and how it must be, how it can be if we stay our hand long enough to let it be so.”
- “Grief: A sign of life stirring toward itself. Grieving is being willing to see now what has become of us, what we have been and done. Grieving is understanding. It is knowledge. It isn’t how you feel about what you know. It is being a faithful witness to the story of how it has been with us and crafting a language that does it justice, and testifying occasionally.”
- “Grief has to be learned, which means it has to be taught. Which means it is possible not to learn it.”
- “Grief is an ability to know certain things about life well and an ability to proceed in your life as if they are true.”
- “Loving and grieving are joined at the hip, for all the beauty, soul, and travail that brings. Grief is a way of loving what has slipped from view. Love is a way of grieving that which has not yet done so.
- “Grief is a way of loving, love is a way of grieving. They need each other to be themselves.”
What the Dying Need from Us
- “So what do dying people need from the rest of us? They need the rest of us to know something enduring and true and useful about what dying is and what it asks for us all, and they need us to be able to act on this wisdom when the time comes.”
- “Though they are not likely to ask for it, dying people need a faithful witness to their dying, not someone who will banish what is hard and demanding about dying.
- “The dilemma for nurses and for most palliative care workers is that the dying people they are trying to care for do not in the early and middle stages of being in palliative care believe that they are dying.”
- Either you will endorse, support, practice, and perpetuate the death phobia of the culture by visiting it upon dying people in the name of caring for them and supporting them in the name of giving them what they say they want, or you will challenge, subvert, derange, and bleed the death phobia of the culture by asking dying people to die in an uncommon way.
- “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.”
- “Most dying people are enormously sad, and they need help in being sad. They don’t require a diagnosis.”
- “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.”
- “The dying person doesn’t need any strength to die. Physical strength makes dying harder, enormously more difficult than it would otherwise be.”
- “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.”
- “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.”
- “Dying people need to hear and speak a language that does justice and bears faithful witness to how dying is.”
- “One of the places that you die — that you know that you’re are dying — is in the eyes of another person who’s 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.”
- “The Dying do need the living to carry them. It is only way that dying people will continue to have presence among their kin.”
- “No longer is it a matter of what to do to someone who is dying, but increasingly it is a matter of what not to do to them, and even more acutely, of what to stop doing to them.”
How to Accept Death & Die Wise
- “The news of our dying can be the time when we finally shuck off that binding illusion that we were supposed to be driving the bus of our lives because we thought we knew how the thing worked. Before then our lives give us plenty of practice at being good at not being in control. That is a skill worth learning, and worth teachings our kids.”
- “If you are not born with the instinct for dying well, you have to learn it.
- “You have to learn how to die, or you probably will not die wisely or well.”
- “You can learn dying from being with dying people, but you can only rarely learn it from them.”
- “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.”
- 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.
- Dying is a time for untying the knots of strength, competence, and familiarity that have bound us to our bodies.
Profound Truths On Life & Death
- “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.
- “Self-hatred is of the same order of disturbance as self-absorption.
- Perhaps everything comforting is familiar. if this is true, then it’s likely that a new experience by definition has no capacity to give comfort.
- “Friendship is better honored by our willingness to risk the friendship itself for the sake of the friend.”
- Mystery must have a proper place, a fundamental place, in learning.
- Knowing is generally hostile to learning, and learning is enormously expensive.
- Learning wonders about the things we claim to know and about knowing at all. Learning is subversive.
- “Dying wise is a learned thing.”
- We are sometimes able to realize late in life, often only then, that the real substance of our lives is contained in its witnesses, that our life is tangible and how it is to others, in the relationships we were a part of.
- We are real, in other words, to the extent that those around us grant us our reality and we theirs.
- “Life is not a human thing. It is what gives us the opportunity to be human.”
- “We don’t say that all of us will inevitably live just because we are born. Whether we live or not depends on all kinds of things, including our stamina, curiosity, willingness to know difficult things, and courage. Whether or not we will die doesn’t depend on our diagnosis or prognosis. It depends on stamina, curiosity, willingness to know difficult things, and courage.”
- “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 scale.”
- The truth is that we cannot, not should we be able to, choreograph the way in which we will be remembered, if we will be remembered at all.
- “Loving someone isn’t inevitable; loving someone who will die is.
- Where do you think we got our fear of disappearing from? We got it from those who feared disappearing as they died.”
- “What the potted plant is willing to teach us is that every living thing needs something to die in order to live.”
- “Death feeds life.”
- “Everything dear to you will perish so that life might continue.”