Being Mortal: Medicine and What Matters in the End (2014) is a book about things that matter to me, and are often so distressing that I have to put the book down and walk away. I would read chunks and then feel too close. I could see the characters with too much clarity, learning how they're feeling and what are the options available to them.
The author, Atul Gawande, is a surgeon--both, I guess, an author and a surgeon at the same time. He brings those two things together as he tells stories of patients. And more than patients: he's talked with the individuals who appear here. He's not performing as some sort of withdrawn medical expert. Instead, he gives details about people's lives, and his own changes become one of the key elements in the book.
Look at some of what I've marked as I've gone through the book:
"People with incurable cancers, for instance, can do remarkably well for a long time after diagnosis. They undergo treatment. Symptoms come under control. They resume regular life. They don't feel sick. But the disease, while slowed, continues progressing, like a night brigade taking out perimeter defenses" (26).
Remarkably well. But. It's remarkable! Not what we expected! A surprise!
But. Night brigade. I don't like any of this. The framing is terrible in terms of my own writing, thinking, experiencing, feeling. I feel that I'm losing a battle that I'm not even fighting. I get to frame this, not go by the familiar stories.
He discusses Stephen Jay Gould:
"'It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity," [Gould] wrote in his 1985 essay. "I prefer the more martial view that death is the ultimate enemy--and I find nothing reproachable in those who rage mightily against the dying of the light'" (171).
Here's another one I find offensive. Well, maybe not offensive. Maybe just something that scrapes against me. He himself is allowed to fight, to have an enemy, to "rage mightily" against the death. But I don't want to be in that place. That rage would give me a kind of energy that grows, and it's not the energy I want. I want to put my energy elsewhere, in a lot of the ways I've blogged about.
"With this new way, in which we together try to figure out how to face mortality and preserve the fiber of a meaningful life, with its loyalties and individuality, we are plodding novices. We are going through a societal learning curve, one person at a time. And that would include me, whether as a doctor or as simply a human being" (193).
Whew. Yes. This is the kind of statement that makes me step away from the book.
How to face mortality and preserve the fiber of a meaningful life. So often he examines how people die--in horrible scenarios in hospitals, and in much better scenarios when they're being carried to (through?) their death with guidance through hospice. I remember Nana, my grandmother, went through hospice as she died. I remember my aunt and dad and I (and other people--surely others of us were there?) sitting with Subway sandwiches. My aunt kept one hand on her mother's, as Nana lay there, eyes closed. Her breathing was slower and slower, until she stopped breathing.
It's a respectful, kind, supportive process. I read the book and think of Nana, and I think of myself. I want hospice like Nana. I want beautiful songs and cremation like Frank.
And I go get a cup of tea. I turn on Netflix for some ridiculous Christmas movie.
Sometimes I didn't have to put the book down, but I'd follow my dad's lead when it comes to frightening movies: when it's too scary, then you step back and examine the process. "Look at the way they built that shark. You can't even believe that it's a shark when it does that" or "
Alien is great because we can see all the slime--they're trying to make it really frightening."
So:
Being Mortal is difficult for me to read because there are people dying, people with cancer, people suffering. So in those moments, I look at
the process: Gawande includes his own narrative with the frightening or overwhelming information. Look how he slides from others' stories and his own. How does he include the narratives of others? One of my comments in the margins: "Story, info, story via info." What he includes and what it does--how does he do this? Would I like to see him write more about his own narrative?
"Well-being is about the reasons one wishes to be alive. Those reasons matter not just at the end of life, or when debility comes, but all along the way. Whenever serious sickness or injury strikes and your body or mind breaks down, the vital questions are the same: What is your understanding of the situation and its potential outcomes? What are your fears and what are your hopes? What are the trade-offs you are willing to make and not willing to make? And what is the course of action that best serves this understanding?" (259).
Motherfuck. This is a way to reject these questions, but
Cheryl Strayer would say, Write like a motherfucker. Can't dismiss the life I'm living. So I sit here with the questions, and I let those questions float around in my mind, my body, the places I sit, the feelings of the holiday as it emerges throughout the neighborhood. Smell. Taste. Breath.
