”We walk around with a blinkered, partial denial of death. Yes, we will die, but not now, not here. This dissonance is strong and strange – to absolutely know this will happen, and against all evidence to the contrary, to absolutely not know.”
The woman who wrote those words, Sallie Tisdale, is well-known as an award-winning author of nine books. She is also an essayist, a nurse, a teacher and a Buddhist practitioner with a decade of working in palliative care.
Her most recent book, Advice for Future Corpses and Those Who Love Them is subtitled, “A Practical Perspection on Death and Dying.” I prefer to call it a user manual for dying, and it's about damned time we had one.
You would think that a subject so big, so taboo in certain circles, so frightening and fraught would need a doorstop-sized book. But not in Tisdale's hands.
These 240 pages cover a remarkable amount of territory from a discussion of what a good death may or may not be, what to expect in the last months, weeks, days and hours of life, advice on caregiving during end of life and a lot of smart, information for every step along the way.
When asked, most of us say we want to die quietly at home in our sleep. Few of us do and Tisdale gives us another perspective to consider:
The fantasy of a quiet leave-taking in complete control is, for the most part, just that: A fantasy. Our ideals about the so-called good death are constricting. Death is not something at which we succeed or fail, something to achieve. Life and death are not possessions...
“We die in breathtaking solitude. The value of a death doesn't depend on what anyone else thinks about it. My death belongs only to me; its value is known only by me.”
Tisdale, who has accompanied many people during their dying, advises us on how to think about our own deaths:
”I want to meet death with curiosity and willingness. What do you want to do? Do you want to meet death with devotion, love, a sense of adventure, or do you want to rage against the failing light? Cultivate those qualities now. Master them...
“When I find myself in a new situation, when I'm scared, I try to feel curiosity even in the middle of fear...If I experience curiosity in the midst of fear often enough, it will be there when I need it most.”
And then, she pulls no punches about what to be prepared for at the end:
”As peaceful as the dying body can seem, would we be surprised to discover this is a time of great chaos? We are undone. Consciousness is no longer grounded in the body; perception and sensation are unraveling.
“The entire braid of the self is coming unwound in a rush. One's point of view must change dramatically. Being comfortable with surprise allows us to meet the unexpected, both in events and with ourselves.
“This curiosity will serve us well when there is nothing else to be done.”
There is a terrific chapter for visitors and caregivers on communication – what not to say to a dying loved one, but also what to say and how to say it. If he or she is hungry, for example:
”Do they want to eat something? If so, be clear. Vanilla or chocolate ice cream? is easier to answer than Is there anything you want to eat?
As to that dying at home stuff that rarely happens, Tisdale explains that good hospitals these days can sometimes be better than home and she knows this because, she says, “I've been the nurse in rooms like this – and I always knock before I enter.”
”While you're getting ready to kick the bucket and head for room temperature, we'll tell jokes if you like. When you're about to check into the Motel Deep 6, the coffeepot will be fresh and the muffins full of butter.
“All of this is possible, but a lot of it happens because you insist. Because you and I and all the rest of us insist that there be enough chairs for everyone, that the curtains will close tightly when you want to sleep, and the room will smell fresh and sweet.
“And you will be comfortable, because in the good hospital your pain medication comes on time and the nurse who brings it knows how to read dying, knows what's to be expected and what can be fixed and what can't.
“In the good hospital, strong hands will clean you up when you can't make to the toilet any longer and no one will make a face or say things that are better not said as you shuffle off the mortal coil.
“What a wonderful turn of phrase that is. When you're ready for your dirt nap and you've bought your one-way ticket, the nurses will take their time. They won't rush.
“They will come in quietly and wash you carefully and brush your hair and clean up and slip away again.”
Tisdale also takes readers through the necessary particulars of death and dying from the biology of it, end-of-life document samples, assisted death which is legal in six states, several European countries, Canada and Australia.
She also covers organ and tissue donation and the growing number of new kinds of burial. She does all this with honesty, humor, compassion and understanding.
It's a tough subject but she even touches on something I came to know – if only for the flash of a moment or two - during my treatment last year for pancreatic cancer:
”At some point, most of us shift from realizing that sooner or later some future self will die to realizing that this very self, me, precious and irreplaceable me, will die.
“It's a terrible thing to grasp and though this insight may last a mere second, it changes your life...”
Yet this passage gives me hope that with diligent working toward growth, I can attain acceptance of a conscious death when the time comes:
”To accept death is to accept that this body belongs to the world. This body is subject to all the forces in the world. This body can be broken. This body will run down. 'Golden lads and girls all must, / As chimney sweepers, come to dust.' (except, maybe me.)”
This is an important book and there is nothing else quite like it to compare but has not gotten nearly enough coverage.