Tuesday, December 1, 2015

Being Mortal

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  He's not performing as some sort of withdrawn medical expert.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.


  1. There's so much to mull over and muse here -- both your words, Alison, and Guwande's. I've read him regularly in The New Yorker, and he seems a beautiful man, capable of great poetry. He can be a mansplainer, too, but then he's a surgeon. Your words have always cut to the bone with a weird and perfect gentleness. Does that make sense?

    1. Thank you for this description--weird and perfect gentleness. I hope I can do this.

  2. For different reasons, I've just read Gawande's Being Mortal, too. It's not exactly a cheery read, but I like his emphasis on quality of life. And, like you, I spent a lot of time thinking about his craft. (I liked all of the stories he was telling, and I thought using his father's own end-of-life process as a kind of narrative thru-line worked really well.) My copy also has lots of post-it notes, marking passages: "The battle of being mortal is the battle to maintain the integrity of one's life — to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or where you want to be" (141).

    Of course, I have the luxury of reading the book at (what I imagine is) a greater distance from my own mortality than you do. And I can see — or, at least I imagine that I can see — how reading it while struggling with a brain tumor would be much scarier. Thank you for sharing your response here. It is, as your writing always is, thoughtful & perceptive.

    1. Thanks, Phil. I'd love to read more of your thoughts on Being Mortal. You're right that following the individuals' experiences is meaningful, especially as we read his story of his father's death.

      Send your thoughts, your quotes, along. This is true for you, too, Elizabeth.

    2. What I take away from Gawande's book is that quality of life is more important than quality, and that determining quality of life varies widely — which is why it's important to have these conversations with loved ones. One person says he could live being paralyzed from the neck down as long as he could eat chocolate ice cream and watch TV. Another person — Gawande's father, as I recall — says that he'd rather die than be paralyzed from the neck down.

      On a personal level, I think about the relative whose condition inspired me to read the book — this isn't something I'm blogging about & so I cannot elaborate further. But I also, to a lesser extent, think about myself because, well, I'm ever conscious of my own mortality. How much time do I have?

      I realize that question has far greater urgency for you, and feel slightly abashed at describing myself as ever conscious of my mortality (because I know that I am not conscious of mine in the same way that you're conscious of yours). But, well, the older we get, the more dead people we know — and the closer we come to our own deaths. And so... mortality becomes more visible. I think of the way that Philip Pullman personifies death in the third book of His Dark Materials — that our death is always with us, but usually hides just out of sight, so as not to trouble us. And I think of talking with the relative & the fact that she seems at peace with her impending demise. I wonder if, when my time comes, I will find that peace.

      I suspect that, were I facing this prospect in what should be the middle of my life — as you are — I would not be at peace. Or I don't think I would. There's a line in Hamilton, which I am currently obsessed with (I've not seen it, but am listening to the original cast album daily): "Why do you write like you're running out of time?" And I do write like I'm running out of time. But also the line "Look around, look around. How lucky we are to be alive right now." That, too. A sense of urgency and haste bumping up against the need to slow down and look around.

      I think these thoughts are more on my mortality, than on Being Mortal. And so,... I've drifted a bit off topic. Perhaps I should conclude.

    3. Thank you for sharing this. It's powerful to read. I'm just today emerging from a chemo day, so I'll be brief: as we age, we start being aware of death. Every now and then. I do have friends who speak to our happy years in our 90s, and that's the space where I step back. I'm not in that space.

      I LOVE your quotes from Hamilton: "Look around, look around. How lucky we are to be alive right now." I also am grateful you mentioned the Pullman books, which I haven't read for ages. They sound perfect.

      Thank you for writing this. As I wake more and more from this medicine, I'll revisit. You could be a visiting blogger.

    4. Thanks, Alison. Very kind of you to say. Also (arg!), I see a typo in my first sentence: should be "quality of life is more important than quantity," but hopefully you auto-corrected that as you read.

      I read your comments this morning, in the emergency room. As it turns out, even a few days after an ice storm, large limbs may block the trail and, when you're cycling before dawn, these limbs may surprise you, knocking you from your bike, landing you on the ground, where, stunned, the first thing you notice is the smaller branch now protruding from the side of your face.

      It was not one of my better mornings.

      But, in that context, it was especially nice — and apt — to read your kind words. So, thank you!

      Also, lest my description (or the photo I've shared via Facebook & Twitter) alarm you, please rest assured: my face will recover. I'm afraid that my chronically poor judgment may continue to inflict its predictable damage. But the face will, in time, be fine.

      You write, "As I wake more and more from this medicine." I like that image. It makes me think of you emerging from the haze of your illness, slowly, gently, but feeling almost refreshed after a Rip-van-Winkle-style nap. I realize that the reality diverges drastically, but the image offers a more hopeful metaphor.

      Oh! And kind of you to invite me to be a visiting blogger. Sure! Or could cross-post something (on my blog and on yours). As you awaken, just let me know what you have in mind.

    5. At this moment, I'm awake--drinking iced coffee and eating an astonishingly cookie. It's a good moment, so I'm being here with it. Yum.

      You told me about your (painful! bloody!) accident. And you warned me about how you'd look after your dramatic incident. After I checked you out online, I see that you actually look tough, in a good way, so this might be the perfect moment to demand your students turn in the best papers they can imagine.

      I hope the hospital gave you some very effective pain killer. Are you able to eat? Or at least have some iced coffee? There's also a delicious funky hot tea with syrup that I also find delicious. When you're here, I can offer lots of ways of soothing your body.

      Okay, LOVE you as a visiting blogger on Every little thing! Do it do it! How can we make this happen? Send me what you want to go up, and I'll do it. Send along visuals, too, if you want them.

    6. Apologies for the delay in my reply. I am — as usual — awash, overwhelmed, inundated. But I will write something!

      Regarding my recently rearranged face: thanks for asking. It's getting better. The only pain medicine I'm using is Advil, but I really only use it at night. So, not to worry! I shall recover from my latest bout of poor judgment.

      I hope your day finds you spending more quality time with good cookies and delicious coffees.

  3. I've read and taught Gawande a lot for Literature and Medicine as well as Illness Narrative classes; because he's a surgeon, he's more respected by doctors than an internist (and woman) like, say, Rita Charon, who is the person to read when it comes to constructing narratives of illness. I haven't read this book yet, but from doing service learning with hospice patients, I've grown to see the beauty, the spirituality, of experiences like your Nana's. The metaphor of "battle" is, I agree, so violent, and it obstructs the beauty of smelling, tasting, breathing (beautifully put). We are all mortal, and this is what I wish for myself and for you (but in the far, far future).

    1. I need to see your syllabuses one of these days. And I went online and bought a Rita Charon book. Thank you!