September 12, 2011
I’m only reading this book because I’m in it.
And even then, I had to promise a few people I’d blog about it to keep me to my resolution to read the whole thing. It’s called Twelve Breaths a Minute published by Southern Methodist University Press, and it’s a series of twenty-three essays about death. My private name for it is The Grim Reader, but I didn’t want to use that as the heading for this post in case it turns anyone off.
It is grim though. In his introduction, Lee Gutkind writes that a colleague who had read it challenged him, “The combined effect is completely depressing.” His answer: “What do you expect?”
It’s a valuable book, and a very moving one. The question is not whether to read it, but rather when and how. I remember when Joan Didion’s The Year of Magical Thinking came out in 2005. The title alone provided a kind of balm, making sense of my experience in the way that great writing can.
I decided I must read it … some day.
That was a couple of years after my mother’s death, and I was just starting to admit to myself how traumatic it had been to see her so ill for so long. I decided to wait until I felt stronger. Then I did, and didn’t want to think about the hard times, at least not for a while. Last winter as I confronted a whole constellation of losses I took the book out of the library. It provided me with invaluable information about the effects of grief. So I wasn’t going crazy or succumbing to early Alzheimer’s when I got lost in my own neighbourhood! It was all part of the process and I wasn’t alone.
I felt deeply grateful for the book. After reading exactly half of it, I took it back to the library, came home bearing an armful of chick-lit, and while I was at it, renewed our Mirvish Theatre subscription. (They’ve got Mary Poppins this year!)
One of my favourite songs is a country and western classic by Pam Tillis called “Cleopatra, Queen of Denial.” An instinct tells me denial in small measure is healthy. After all, we know what’s coming. Is thinking about it in advance going to help?
Well, yes. Which is the value of this collection of beautifully written but excruciating essays. Medicine continually struggles to fix things, to do, and this leads to nothing short of torture for people in their last days of life when they are utterly dependent on the compassion of others. As a society, we turn our backs on the aging so that they are relegated to hellish nursing homes, sometimes for years. In one essay this is referred to in the anthology by Carol Cooley as “Figurative Death.” Most people I know would be the first to condemn torture and imprisonment, yet we’re doing it every day, in our own country, to the people we love the most. And families are not to blame; often, it’s the only option open to them.
Treating death as the enemy in an adversarial medical system, we save lives we can’t support. This leaves families without resources. In “Insights in a Rearview Mirror,” Phyllis Galley Westover writes of saving her 101-year-old father from drowning, only to wonder whether the two years that followed were worth the suffering … for either of them. She’s honest about her resentments, in a way that makes the love she expresses for her father ring all the more true. In many families, it’s an operation or drug intervention that raises similar questions. My own story, “Rules,” hovers around this very topic.
We have created new shades of gray in the definitions of life and death. In the astounding, “The Resurrection of Wonder Woman,” a mother donates her brain-dead daughter’s organs for “harvest.” Eleanor Vincent describes her agony at having no moment when she truly knows her daughter is dead. Thus, she spends years believing, at a level beneath reason, that she has allowed her daughter to be vivisected. Despite all this, she comes out in favour of organ and tissue donation. It is only through this kind of unflinching discussion that we can really come to terms with the issues medical advancement has raised.
The pain of these essays is the pain of lancing a long-impacted boil. The more infected it gets, the less we’re inclined to touch it, and yet, each of us must.
In a series of opening remarks, Karen Wolk Feinstein of the Jewish Healtcare Foundation in the US expresses the hope that this book be treated as a kind of conversation, and that it be a conversation-starter. Being part of the book had exactly that effect on me. The echoes are astounding. Little details of the nursing home, the ICU or emergency ward brought a satisfying nod of recognition, and I saw my experience as a care-giver in a larger context.
There’s no way for me to read my own story objectively or determine the way it fits with the others. For what it’s worth, though, I felt that it was sanitized in relation to many of the others, glossing over the most sordid details, adding judicious amounts of comic relief, even attributing a wry joke to my mother’s departing spirit at the end.
It was so important to me not to see my mother reduced to her illness, ever, and I thought of my portrayal as a kind of tribute to her feistiness and humour. I laboured to tell only what was necessary about her loss of dignity. It was the same instinct that possessed me, after her death, when asked if I would allow an autopsy for the purpose of science. I was oh-so-aware of my animal nature at that moment. In reply I growled (yes, growled): “Leave her alone!”
Back then her body was my responsibility. Now, it’s her story I strive to protect.
But — as I found reading Twelve Breaths a Minute — the stories which share details of illness and decline show no disrespect to their subjects. Now, I wonder if I lacked courage or enough distance to look into those dark corners. Like the organ “harvest,” it can be worthwhile to mine even the most painful experience, if it leads to new life.
Most valuable of all is the interdisciplinary nature of this book. There are essays not only from family members but from doctors, medical residents, nurses and hospice workers. It’s clear across the board that there’s something wrong with the way we deal with death, and writing about all the grim details can galvanize us to change.
For my own part, I found the essays by doctors the most moving. In the opening story, “To Morning” a young resident, Anne Jacobson, juggles code after code throughout a long night. This brought the first hint of compassion in what had become a long-encrusted layer of anger at medical insensitivity. Over my years of caregiving I witnessed everything from flippancy to outright neglect. Obviously I don’t condone it any more now than I ever did. Through Jacobson’s essay, though, I began to understand what the medical environment and its punishing schedule costs the resident herself. The extra few moments spent in one room are moments taken from another: simple as that. Mistakes are made. Remarks, tossed off. The stupidity of bringing dying people into an ICU is made clear, again and again.
Nurses, ambulance drivers and hospice workers contribute similarly eloquent voices to this conversation. In the concluding essay, “Twelve Breaths a Minute,” Gulchin Ergun recounts what went through her mind when, as a resident, she was faced with having to unplug a ventilator. She describes the practicalities of the task, the fumblings she goes through with a vividness that transport us into her inner world. After so many years of training, stuffed full of medical knowledge she had no inkling of how to support someone at the end of life.
The book juxtaposes horrendous experiences with what can be called, “good” death. Among the other things I learned, reading it, was that my mother, despite having a rough life, had a good death. This was first and foremost because she was Jewish and had more services available to her than did others in her income bracket. It was also because I (yes, I do take credit) argued, cajoled, lied and even blackmailed her into using those services. She spent her final years in a facility where there was hospice care when the time came. To do that, I had to fight her denial and that of many other people.
Being a caregiver was for me profoundly isolating, and when it was over, I was desperate to reconstruct my own life. I wanted nothing more than to forget about it all. Still, I carry it with me and always will. Reading this book was like airing out a neglected room and I could not help concluding that silence surrounds the life experiences that need most to be talked about.
Or do they? Always, the same knee jerk reaction. Would I recommend that someone whose parent recently had a stroke pick up this book? Or a young person wanting to know what to look forward to in life?
Never! Forget it! Go to the movies! You’ll find out soon enough …
Or will it be too late? Even in the case of “good death,” we still have a lot to learn. About how to do, it and how to support it. How do you teach a thing like that? This experience is private, and unique to the individual. There is no dress rehearsal. Yet does that mean we have to abandon each individual, and each family, to blunder along so painfully?
At the very least, we can start the conversation.