I’d picked up a copy of the book When Breath Becomes Air by Paul Kalanithy after reading a reference to it in a NYTimes article about John McCain, and Grant gave me the nudge to actually start reading it. It’s an amazing read, about a young neurologist/budding neuroscientist, who spends his life learning about the nature of life, and death, by experiencing it.
I’m thankful that the decisions I’m faced with are happening in slow motion compared to his story, but the effects are largely the same. I’m afraid of so many things now – most notably, of leaving J. alone after putting her through the ringer.
And I’m no neurologist. I’m not saving lives. My life’s work has been to help people integrate technology into their teaching and learning. Man, that seems pretty goddamned trivial now.
I held it together until the epilogue, which was written by his wife Lucy after his death.
Some of the highlighted passages I noted as I read:
Severe illness wasn’t life – altering, it was life – shattering. It felt less like an epiphany — a piercing burst of light, illuminating What Really Matters — and more like someone had just firebombed the path forward. Now I would have to work around it.
I began to realize that coming in such close contact with my own mortality had changed both nothing and everything. Before my cancer was diagnosed, I knew that someday I would die, but I didn’t know when. After the diagnosis, I knew that someday I would die, but I didn’t know when. But now I knew it acutely. The problem wasn’t really a scientific one. The fact of death is unsettling. Yet there is no other way to live.
The man who loved hiking, camping, and running, who expressed his love through gigantic hugs, who threw his giggling niece high in the air — that was a man I no longer was. At best, I could aim to be him again.
…but knowing that even if I’m dying, until I actually die, I am still living.
…part of me wanted to be excused from picking up the yoke again.
The tricky part of illness is that, as you go through it, your values are constantly changing. You try to figure out what matters to you, and then you keep figuring it out. It felt like someone had taken away my credit card and I was having to learn how to budget. You may decide you want to spend your time working as a neurosurgeon, but two months later, you may feel differently. Two months after that, you may want to learn to play the saxophone or devote yourself to the church. Death may be a one – time event, but living with terminal illness is a process.
The way forward would seem obvious, if only I knew how many months or years I had left. Tell me three months, I’d spend time with family. Tell me one year, I’d write a book. Give me ten years, I’d get back to treating diseases. The truth that you live one day at a time didn’t help : What was I supposed to do with that day?
Maybe, in the absence of any certainty, we should just assume that we’re going to live a long time. Maybe that’s the only way forward.
Human knowledge is never contained in one person. It grows from the relationships we create between each other and the world, and still it is never complete.
“Okay,” she said. “That’s fine. You can stop neurosurgery if, say, you want to focus on something that matters more to you. But not because you are sick. You aren’t any sicker than you were a week ago.
I hadn’t ever considered that I could release myself from the responsibility of my own medical care. I’d just assumed all patients became experts at their own diseases.
There are, I imagine, two responses to that realization. The most obvious might be an impulse to frantic activity : to “live life to its fullest,” to travel, to dine, to achieve a host of neglected ambitions. Part of the cruelty of cancer, though, is not only that it limits your time ; it also limits your energy, vastly reducing the amount you can squeeze into a day. It is a tired hare who now races. And even if I had the energy, I prefer a more tortoiselike approach. I plod, I ponder. Some days, I simply persist.
and, from the epilogue written by Lucy after Paul’s death:
Paul faced each stage of his illness with grace — not with bravado or a misguided faith that he would “overcome” or “beat” cancer but with an authenticity that allowed him to grieve the loss of the future he had planned and forge a new one.