In the foreward to the book When Breath Becomes Air, Abraham Verghese says that by reading the book, we "see what courage sounds like," and then he encourages readers to listen and then, "in the silences between his words, listen to what you have to say back." This is what I have to say back.
In some of my book reviews, I am able to write strictly about the book. But, for the majority of the books I read, my response is so intertwined with my life experiences that sometimes I can't separate the two. When Breath Becomes Air, by Paul Kalanithi, which I read about a week after Kendell came home from the hospital, is one of those books that is completely inseparable; my response to and interaction with it are entirely woven with what I was experiencing in my life when I read it. You might think that, so soon after my husband nearly dying, I might want to avoid a book about the process of a man dying.
But it was exactly the right book for me at that time.
So this "book review" is more about me and my experiences and how they interact with the book, as well as some of my thoughts on the process of dying, than it is about the book itself.
When Breath Becomes Air is the memoir of a neurosurgeon who, just when he is finishing his training, discovers he has lung cancer. The book explores not just his regiment of cancer treatments and process of dying—these are, in fact, not the book's focus—but his explorations as a doctor of what death means, of how we die, and, most importantly, what it means to be alive. When does life end and death begin?
Recent experiences aside, this has always been an intriguing question for me. The process of my dad's death—a day or so of hospice care at home—felt remarkably like the process of birth: some medical interaction, family members coming and going, the final moments with only the most relevant people witnessing the last breath. (The difference, of course, being that it was the last breath instead of the first.) All of it felt imbued with humanness, with a sense of this being one of the things that happens to people. I know it isn't always this way, but for him it was a process, wherein he very slowly left; the last breath was subtle. But it was also a thing I felt very strongly: he was there, and then he wasn't. That is what the book's title suggests to me, how breathing—an activity—simply becomes air moving, which is passive.
For my dad, even before he was actively dying, his breath had, on a certain level, become air. Breathing only happened because his brain made it happen, even though if his mind could have told us, it certainly would have said "stop."
There is a huge variety of other reasons this happens, though. Brain death is slow or quick, depending; sometimes the brain can keep the breathing going, and sometimes it is only a machine moving the air. If it is only a machine, is the person still "alive"? Even if the brain is controlling the breathing, but there is no real thought process—is that person still "alive"? What does "alive" really mean?
I think that, had I read this book before Kendell's cardiac arrest, I would have thought about it during those days when he was in his medical coma. What I was grateful for during those awful hours was the conversations we had had, many times over the past eight years of his surgeries, about death, dying, and what limitations we want to live with. We each have an advanced medical directive, and because Kendell and I had talked so often about getting trapped in uncooperative bodies, I knew exactly what he would want me to do: let him go.
At critical medical junctures, Kalanithi writes, "the question is not simply whether to live or die but what kind of life is worth living. . . Because the brain mediates our experience of the world, any neurological problem forces a patient and family, ideally with a doctor as a guide, to answer this question: What makes life meaningful enough to go on living?" I don't want to just be breathing and taking up space, here in body if not in mind. I also don't want my husband to go through that, either, because I know what, for him, makes life meaningful: being productive, doing things, going on hikes, taking care of his family.
This book made me think about my answers to that question: what makes life meaningful enough to go on living? If I couldn't hike or run anymore, but I could still walk and talk and write and be with the people I love, would that be enough? If I could be physically active but my mind wasn't working well enough that I could still talk, read, write, and be creative, would that? What real, literal limitations am I willing to live with and what could I not live without?
(This is, of course, in a hypothetical situation where we could choose. During that hospital wait with Kendell, it felt like there was a tiny chance he would be OK, and a tiny chance that he would die, and an enormous possibility of being "alive"—air moving through his lungs—but not himself, and honestly: that was what terrified me the most. It was the thing I prayed the hardest for: don't let him get stuck. )
In the end, I finished this book feeling like I had had a conversation with a friend who understood me and my thoughts about death—and life. Dr. Kalanithi was, in addition to being a neurosurgeon, interested in literature, a life-long reader. He does what I imagine I would do if confronted by cancer: turn to books. Not for a cure, but for an emotional solution, a way both to escape and cope. The conversation doesn't feel finished—he didn't have enough time to write the book he wanted—and it is one I will continue having with my family. But it is also one I think our society needs to begin discussing: just because we can save a life, should we? Is the quality of existence worth the quantity of months we give them? When is medicine trying to do more than it can?
As his illness progressed, Dr. Kalanithi realized that he "lived in a different world, a more ancient one, where human action paled against superhuman forces, a world that was more Greek tragedy than Shakespeare." This is because when you have any sort of life-altering medical condition, it feels like most of your choice is removed. There isn't a lot of action you can take. You can't choose yourself well. You can't just decide to get better. And often the choices you can make are either-or situations where both sides have difficulties. There are no easy choices.
But death—death. The older I get, the more firmly I believe that death, in many situations, should be a choice, should be a thing, or quite possibly the very thing, that a patient gets to control, as much as possible. I know that not everyone will agree with me, that suffering can be viewed as a normal part of life, that other people's suffering give us each a chance to serve. But all of that is an outsider observing, rather than experiencing, the suffering. When it ends should be the patient's choice, and for me and my husband, we have decided that living in interminable suffering, or even just a lingering state of nothingness, is not for us.
When Breath Becomes Air isn't really about any of what I just wrote. It's not an argument for euthanasia, even though what I found within it made me consider my position. It is a book that is both simple and profound; entirely moving and unforgettable, sad yet life-affirming, gentle and at the same time stark. People die; we stop existing. How we die, and when, is a part of our lives that we need to discuss and plan for, while at the same time using our ability to choose to create extraordinary things with the life we do have.