This week’s invitation includes an excerpt from Stephen Jenkinson’s book Die Wise: A Manifesto for Sanity and Soul, which was on the reading list for the Weaving Grief retreat. While I hope that the deep value and urgency of the text justifies my sharing it at length without the author’s or publisher’s explicit permission, I also want to urge people to read it. Or, as I am doing, listen to the author reading it.
I wrote to Jenkinson in 2015, after first reading an interview with him in The Sun Magazine. I was in my first year of divinity school, and I hoped to get him to come to speak there, or give a workshop, or something. I couldn’t find anyone to get as excited about him as I was, and then my studies and life swept me along. Then, after moving to Ireland, I reached out again when he was running a course in the UK. The courses, which he’d been running both at his farm in (what is called) Canada, and in the UK, were not outrageously expensive, but still out of my student budget. They consisted of 2-3 sessions, each a week (or more?) long, a few months apart, each session building on the last, so that you had to commit to doing them all. I’d missed the first 2 parts of the training in the UK, but I was so close, geographically, without much thought to return to North America, so I wrote to him again, asking if there was anyway I could join. His (or someone’s) response was kind, long, and demanding. I would have to do A LOT of work to catch up in order to join this cohort. It was in 2018, I think, I can no longer find the emails; anyway, for various reasons, I didn’t feel I could do it. I really hope I wrote to say thank you. I think I did. But in one way or another, I come back to the same work. Grief work.
I think part of the urgency I was feeling, in both 2014 and 2018, had to do with feeling so unprepared for the climate emergency we were/are facing, and the limited examples of adequate ways to face it collectively. And at the same time, they were also both periods of a lot of personal grief. Then, Extinction Rebellion started, and, while I felt it was important for the climate crisis to go mainstream, I paradoxically wanted something quieter, smaller, slower, and, honestly, weirder — which, I know, makes no sense. To go mainstream, the news had to be loud, big, urgent, organized. Only, those words and impulses have something to do with how we got here in the first place. There’s a quote by Bayo Akomolafe that gets meme-d a lot, “What if the way we respond to the crisis is part of the crisis?” And there are Indigenous scholar-activists like Pat McCabe and Kyle Powys Whyte saying things along the lines of: at the root of all this is our fear of death, and at the heart of all this is the breakdown of relationships. And Claudia Rankine saying “the condition of Black life is mourning,” and Jenkinson saying grief/mourning ought to be, openly, the mode that represents our age. But we can hardly admit our world (worlds, really) is dying, and what that means — not just in numbers of species and languages and ecosystems we lose, but how to bear guilt, responsibility, hope, what hope might even mean — when we have so much difficulty thinking and talking and feeling and being with our own dying(s).
So, before moving on to the text from Dying Wise, it would be helpful to take a deep breath. Your own precious breath — you are alive! Another breath. Check in with how you’re feeling right now. Move your gaze gently around the room, naming things you notice, to yourself or out loud. Contemplating death is a spiritual practice. In a death-phobic culture — and here I am talking about something like Western culture, and also sitting with the mess that Black and Indigenous death carries so much of the burden of collective thinking about death — what I am trying to say is that thinking about this is sacred labor and spiritual activism. And if thinking and reading about dying is too overwhelming right now, give yourself permission to pass/ bookmark/ commit to reading this at another time. If you’re like me, you might find this difficult and at the same time also regulating, in the sense of coming into alignment with something you know is true, even if it’s not visible — a recentering kind of faith.
Here’s the text:
Early on in the business I saw that what passed for a fitting and deserved dying
was very often sedated dying or managed dying or defeated dying or collapse. I saw
far too many people with well-controlled pain and symptoms die in an unarticulated,
low-grade, grinding, and unspectacular terror anyway. I saw that antidepressants and
sedation were the rule and not the exception. I saw the full panoply of medical
technology unfurled for the benefit of dying people, and I saw that there wasn’t
much practice wisdom nearly as vast or as well tested that was guiding that
technology’s use. 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. This poverty was the
constant companion and chimera of almost every dying person I worked with. 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.
So I started to do what no one was asking me to do. I worked a long time on the
idea of a good death. I wondered how it is that things have come to what they are
now, for dying people and their families and their caregivers. I started teaching that
dying people deserved dying-centered care, a complete novelty then and probably
now. I started asking all the old ideas that permeate the palliative care field in North
America to earn their keep, and I found that many of them couldn’t do so. And then
I started asking dying people to die well. Not encouraging them or inviting them or
offering them the option or waiting until they were ready, but imploring them to do
it, often obliging them to do it. I began to teach the idea that dying well is a right of
all dying people and an obligation that must rest upon the culture in which they are
This book tells you something of what I learned and what happened when I
began dreaming aloud that it could be different. I have taught many of the ideas in
this book to thousands of people working in the palliative care field in North
America and Europe, and to thousands more who will one day be on the receiving
end of that care. The reactions have been mixed, to be honest. Many people working
on the front line in medicine, continuing care, and counseling institutions have some
genuine relief when they hear these things, because they corroborate the uneasiness
and hollow feeling these workers frequently have about how people die in their care,
and because it gives them a sense that things could—must—be different. Their
gratitude is often confused and unclear, but it is palpable. Further up the food chain
in palliative care organizations, where people in managerial positions tend more to
identify themselves with the current treatment options and where they have the
responsibility of delivering on the status quo, there’s been considerably more
reluctance even to consider some of these ideas, and there’s a good amount of
hostility and derision about them too. This continues to be so.
The care of dying people is as grim as it often is not because the caregivers want it
that way, nor because they don’t care or are burned out or too rigid to change or not
smart enough. Dying people and their families don’t want it that way either. Things
are the way they are mainly by default. A real alternative, one that has a clinical,
cultural, spiritual, and political depth and corroboration in which we can plant the
noble motivations and sentiments and the training that so many of us bring to this
work, is rare. It is rare too for the families that are trying to care for their dying
loved ones. It is painfully rare for those people among us who now, without much
fanfare or warning or teaching about it under their belts, are dying. As it stands,
some version of what you will read in these pages is coming to us all, our
imaginations being stilled or addled by what passes for compassion and sanity and
the way it goes, looking landward for some sign of shelter, some home for our great
love of life and our last days, often sedated, vaguely, chronically distraught.
Dying wise: That’s that antidote. 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.
This book is an unblinking gaze into the maw of what we have done to dying and
to dying people in the name of caring for them, and it is a rankling plea for how it
all could be. I began years ago in the palliative care business, but I ended up in the
redemption business. I am demanding wisdom. I am making a plea for redeeming
our way of dying. This book offers a way of doing so.
I’ve included in Die Wise quite a few stories about dying people and their
families. None of these stories report fact, but all of them are true. There were real
people, and I have been faithful to them in the stories. People indeed said many or
probably all of the things I have ascribed to them, but they and their stories are not
facts. Facts happen once and typically fade and so have nominal use, I would say. But
true things are true because they happen and happen again, sometimes in heavily
altered form, and so are a trustworthy signature of the Makers of Life, as clear as the
whorls of their thumbs. So the stories here are given to you as a kind of polestar by
which you can make your way. Dying is tough sledding, to be sure, and the stories of
others who came before you can help. Blessed with a good or well-exercised memory,
you can recognize these true things through the length of your days and moderate
the general demand made upon you for facts. The stories I tell here can help with
that too. They are true stories.
This is a book that could be useful to you if you read it sometime before Your
Time comes. That I can promise. It is a book for those of you working in the death
trade with all kinds of good intent about helping people. Most especially it is for
those of you who have the news of your dying in hand or who are waiting for the
news that seems certain to come in, and for those who love you. It is a book for all
who will fail to live forever.
Against the usual instincts though, I am asking all who read this to forego their
normal hope for a plan, a grand scheme to fix what’s wrong to kick in after thirty
pages. It won’t happen here. That is a big part of why it is the way it is at the end of
our lives, this problem-solving reflex. It is that way with most relationships in
trouble: We instinctively try harder to do more of what we’ve been doing that got us
into trouble, trying to fix what we are hardly willing to learn.
Instead, we have to earn our way toward a better day. We will earn that by
staying a long time with the way it is, by wondering: How is it that what seems so
inevitable and so natural to us about our lives ending is so foreign to most of the
world’s peoples? What is it like, really, to die in our time and place? Instead of a new
plan to replace the old plan, a few lines scratched into the shoreline sand with a twig
from an old white pine—that’s how we’ll begin. That is how we’ll begin to
remember how it has come to be as it is, and to remember that dying hasn’t always
been as crazed as it is now. To get the crankshaft cranking and for all our sakes, here
are the articles of faith, an overture to what I ask you to consider in this book. These
are the bones of an Orphan Wisdom that I am certain, without much proof, we
remain capable of remembering and treasuring and acting upon.
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. Opting out of that agreement because of personal belief or
professional prejudice will rob others of a chance to see and learn the possibility and
the labor involved in dying well. We have to widen the circle of responsibility far
beyond doctors and nurses until it includes extended family and neighbors and
legislators and funeral directors and school curricula designers and nursing home
managers and dying people themselves. All of us are bound to each other now by the
shared obligation of securing good dying from the mayhem of managed, muted
expiration that has become the norm.
DYING WISE IS A MORAL OBLIGATION. Dying well is not a matter of enlightened
self-interest or personal preference. If you can begin to see how dying badly poisons
the social, political, professional, and personal discourse about the purpose and
meaning of health care and social welfare and being born and dying, if you get a
glimpse of how the concentric circles of mayhem and spell casting attending a bad
death do not end with that death but actually accelerate and deepen and turn into
best practice manuals and family mythologies that have generations of unintended
consequence, then you can know each death properly as another chance to die well
and to learn the adult mystery of deep living in the face of what often seems to rob
life of its depth. Dying well must become an obligation that living people and dying
people owe to each other and to those to come.
DYING WISE IS 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. Dying well gathers adversaries. Of this
you can be sure. Dying well means dying knowing that there is much at stake for the
greater good. Whose death is it, anyway? It is all of our deaths, one death at a time,
until our 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
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 well is not the end of parenting, but the fullness of parenting, not the
end of a marriage, but the last great act of a married life. Dying well is a bequest
that you leave to those you love, probably the only thing that in the end will not be
eaten by moths, apportioned by lawyers, or bought for quarters in a yard sale. Dying
well is the way you could be known by those you won’t live long enough to meet, the
way by which they might feel loved by you after you die.
DYING WISE IS SPIRITUAL ACTIVISM. It doesn’t require you to change your religion or
get a religion or free yourself from one. Dying well is a portion of what your religion
owes the world, as part of earning its keep, and what you owe your religion, as a part
of you earning yours. It whispers to those terrified and depressed by a terminal
diagnosis—those with and without a religion—that there is such a thing as dying
wisely and well, that it can be done. Dying is not the collapse or the eclipse of
wisdom. It is the sum of a soulful life. It dares and pleads with all professionals and
volunteers and family members and neighbors to be partners in learning and
championing the great, worthy spiritual project of dying wisely and well. Seeing the
end of your life is the birth of your ability to love being alive. It is the cradle of your
love of life.
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. We suffer in our dying
time from our addled language, from our assumptions about trauma, and because we
think dying is what happens to our bodies. We suffer because we have little wonder
about what passes for common sense about dying. We suffer from a withered mythic
understanding of living and dying that will not stand the test of time. We deserve
better than we get when it comes to dying, and until we change all of this, dying will
ask more of dying people than should be asked of them. 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. How we live and die, the whole gaggle of
decisions, torments, convictions, loves, and losses, all of this rolling on is the river of
our days. Dying, and helping someone die, is a time for watching that river roll on
and getting to know its eddies and its ways. It is a time for standing still beside the
old pine, or beside where it used to be, learning life. Dying is not a time for not
My farm, as I found out, is the valley between the river and the mountain. Since
the River of Abundance and Time and The Mountain are still there, our long and
narrow farm gets to be there between them, and we get to live on it, and make of the
life granted us our lives. And so it seems to me that 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.
In our darker and lonelier days we can feel constrained or rebuked or turned away
from by those more enduring things—things like dying—that our way of living
won’t change, that have no regard for what we mean, that will be there, God willing,
long after the roil of our life goes on by. That is one of the things that can make
dying so hard: looking around and realizing that everything you see, including the
poorly built buildings and the questionable souvenirs, will outlast you.
But live your days, friends, and if you can get up a little higher along the edge of
your life to see maybe a hundred acres of what you’ve lived from the east to the west,
stand there long enough to say some unobservant thing. Guaranteed that you will. If
you are lucky you’ll have some companion make that climb with you and say
without rancor, with just enough humor, “What valley is that?” Somewhere in there
you will learn how to be a companion on someone else’s climb up the little mountain
of their days.
And then it will be your turn. Would that a companion or two show themselves.
This is a book for that kind of companionship.
I want to say, finally, I am thinking about Jenkinson’s text alongside the reading from the Gospel of Mark, about the beheading of John the Baptist. Surely this is not the kind of death Jenkinson has in mind? I keep thinking about this line: “Herod feared John, knowing that he was a righteous and holy man, and he protected him. When he heard him, he was greatly perplexed; and yet he liked to listen to him.” And then, I am thinking about what a terrible power humans allow certain words in certain contexts to have: because Herod promised to grant any request of his daughter’s, he had to behead John; how that perplexing pleasure was not enough to keep John’s head on his shoulders. Because power analysis becomes more reflexive for anything I read, I want to say it matters both who is ordering death, and who is asking whom to think about death, or to “let go of Ego desire for survival and security,” as Father Thomas Keating asks in the “Welcoming Prayer” I often use to open Coffee Hour. Stephen Jenkinson is an eloquent, educated, white-bodied North American dude with kind, sad eyes and the top five buttons of his shirt opened; he has lived and worked close to the land, learned from it and from Indigenous people, and dying people, who may not have particularly wished to teach anyone anything through their own dying. And he moves, as we all do, but maybe with more swagger, in a world governed — for the moment, still — by capitalism. All of that is worth naming.
Coffee Hour is a lightly facilitated, gently theological online space where you are welcome, no religious commitment assumed or expected. It happens every week at 1-2pm Irish time. The password changes (for this week it is: StephenJenkinson); the video conference link is: https://meet.jit.si/CoffeeHourWithFriends2021