You might remember being a raucous teenager, publicly heroic and stout in your opinions,
privately haunted by every untested thing in you, wading deep into the current of all you haven’t known,
bravely swapping opinions with your friends about what each of you would do if you found out you had
a day or a year to live. Most all of us were sure then, or seemed sure, that if we knew we were
going to die we would give ourselves to every excess, every body extravagance, that our upbringing
or our judgment or our shyness had so far forbidden. The sureness of our dying would ennoble us
and make us whole. It would clear our minds of distraction, of pettiness and stupid proprieties,
and it would give us the courage of our conviction. Our dying, we knew then, would make us live.
I have worked for a decade in the death trade, and nowhere have I seen that bravado survive
a terminal diagnosis. What I have seen instead is an unknowing and a feeling of betrayal that has
no bottom, no limit, nothing that seems human in it. Instead, most of the dying
I have seen has the end of humanity in it. That bravado we once wielded is a fugitive
when dying comes, breaking our certainty as it flees,
and in the hole that is left we make our death bed.

I’ve had the hard privilege of being with something like a thousand people as their lives moved them,
sometimes gently, more times terror stricken, their heels dug in, making furrows of despair in the fields
of their last days, cursing the way things are, to their deaths. I’ve learned strange facts at those death beds,
hard truths, lessons that turned out later to be lies. One of those deeply untrue things: Dying people know
how to die. Another: Grieving is inevitable if the thing is sad enough.
And another, maybe the sovereign of all that is untrue among us:
Dying is part of living.

We have a medical technology unmatched in human history. We have a diagnostic sophistication
and precision that melts the mystery of the body’s life and death into disease trajectories,
treatment regimes, strategies of symptom management. We have, depending on where you live
and how compliant you are with the treatment plan, dying that is largely pain controlled if not pain free,
dying that is unsurprising, expected, well known in its physics and chemistry, its cause and course.
And for all that, it is harder to die now than it has ever been, ever in this country and ever in human history.
That is not the fault of medical technology, nor is it the fault of the technicians and the physicians
that prescribe and administer that technology. Our problem with dying is not a medical problem.
It is bigger, much bigger, than medicine. Our way of dying is the hardest that human kind has known
because we are dying in a place and time that doesn’t credit, doesn’t honour, doesn’t believe in dying.
In a competence addicted culture wedded to limitless, costless achievement, dying is mostly an insult to
our sense of justice and an inconvenience to our plans for ourselves and those we love.
We are living in a culture that doesn’t know dying, and when our time of dying comes our culture
has no place for us. Those who are dying among us have an uncertain citizenship in the land of the living,
and each of our awkward gestures designed to help them live as normal a life as possible,
under the circumstances, further shadows their remaining days with unintended aloneness. Strange as it
sounds and strange as it is, no one wants bad dying and bad dying abounds.

My work – agitating for good dying – is akin to telling jokes in the wilderness, where you can’t know
whether your jokes are funny, or whether they are jokes at all. I have been a grief monger for years, an
activist and a purveyor of good dying in a land where no one wants to die. As those years have gone on,
I am more persuaded that any ability we as a culture might have to make a good death for us and for those
we love will grow not from a continuing concentration on personal eating habits, personal stress management, personal goals, personal enlightenment. Our myriad ways of dying badly – in terror, in grim isolation,
in a sedated no man’s land – doesn’t come from personal habits or shortcomings. Very few of us really
decide what death means, especially in those months or years between our terminal diagnosis
and the end of our days. The meanings of death available to us are driven by culture, not psychology.
Living in a culture that makes no place for learning about the end of things, we can’t be entirely surprised
that the end of our lives comes with shock, disbelief, and a withered capacity to live as if our dying is
as true to us and about us as our loving is.

If we are to change any of this, I think we can only do so by taking upon ourselves nothing less
than a reimagining of what living well means, what being born is for,
why all that we have known will end.

A good dying now is nothing less than cultural subversion. Advocating for, providing for,
pursuing good dying for ourselves and for those we love is a political and a spiritual project.
It is an act of love and an act of revolution. A good death is everyone’s right, all seem to agree,
but it is also everyone’s responsibility to know and pursue and defend. Knowing death well and
being useful when it comes is a redemptive thing. It is a debt, and no less a debt than is
drinking water and breathable air, that we owe to those generations we will not live to see.