“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 keep figuring it out...Death may be a one-time event but living with terminal illness is a process.” - Paul Kalanithi
This is not a book review. It is not a synopsis nor an abstract, a digest nor summary. It is one person's response to a remarkable memoir by Paul Kalanithi, a brilliant neurosurgeon and neuroscientist cut down at age 38 by metastatic lung cancer.
After a disappointing survey awhile ago of a handful of books written by people with a terminal illness, I tossed them and the genre itself aside. Perhaps I chose poorly but each book in its own way was inarticulate, treacly, vague, sentimental and – particularly odd for such a fraught topic – boring.
It would have been smarter of me to start with When Breath Becomes Air which has been lying around my home unread, until last month, since it was published in 2016, a year after Kalanithi died.
This was a man driven from childhood to understand what it means to be human, to find out “what makes human life meaningful.” In his earliest years and in college, he turned to literature for clues and throughout his medical education and practice, he never stopped working on that question.
Most of us give up on existential mysteries as unanswerable. But Kalanithi kept pecking away at them throughout his short life from as many angles as were made evident to him. Two snippets from his book in this regard:
“...to understand how the brain could give rise to an organism capable of finding meaning in the world.”
“...direct experience of life-and-death questions was essential to generating substantial moral opinions about them.”
And in terms of the accumulated losses that inevitably accompany a terminal disease,
“What makes life meaningful enough to go on living?”
There has hardly been a day, after I underwent the Whipple procedure for pancreatic cancer in 2017, learned later that the breathing problems I had been having are due to COPD, and gained a couple of other chronic but minor ailments, that I haven't asked myself when enough will be enough.
The world lost more than a brilliant physician/surgeon when Paul Kalanithi died; we lost a philosopher – perhaps we could say a philosopher of medicine – too. Much in his book is conditional – he was still working on those unanswerable questions until he couldn't anymore and I wonder what more he could have enlightened us with if he had not died so young.
I've met a lot of doctors and other medical professionals since cancer so dramatically changed my life. I like and respect them all, and I hope they have put the kind of thought to their work that Kalanithi did. He writes that neurosurgery “compelled and awed him.”
“Before operating on a patient's brain, I realized, I must first understand his mind: his identity, his values, what makes his life worth living, and what devastation makes it reasonable to let that life end.
“The call to protect life – and not merely life but another's identity; it is perhaps not too much to say another's soul – was obvious in its sacredness...
“Those burdens are what make medicine holy...”
I want now to believe that all medical professionals believe medicine is holy because, says Kalanithi,
“...the physician's duty is not to stave off death or return patients to their old lives, but to take into our arms a patient and family whose lives have disintegrated and work until they can stand back up and face, and make sense of their own existence.”
Hardly any healthy person can conceive of his or her own death in any real way. Even though physicians spend more time around death than most other people, Kalanithi comes remarkably close, at various points in his book, to the kind of dissonance I have felt about having a terminal disease:
“I knew that someday I would die, but I didn't know when. But now I knew acutely. The problem wasn't really a scientific one. The fact of death is unsettling. Yet there is no other way to live.”
“I hadn't expected the prospect of facing my own mortality to be so disorienting, so dislocating.”
“...the shadow of death obscured the meaning of any action.”
“The future, instead of the ladder toward the goals of life, flattens out into a perpetual present. Money, status, all the vanities the preacher of Ecclesiastes described hold so little interest: a chasing after wind, indeed.”
All those things and more? Me too. Every day.
But my god, life is powerful. You might even say that life has a life of its own. Even when you're old, even when you know this thing eating your body from the inside cannot be stopped, life insists that you pay attention to it.
“...seeing death as an imposing itinerant visitor but knowing that even if I'm dying,” wrote Kalanithi, “until I actually die, I am still living.”
And so he did. After his diagnosis, Dr. Kalanithi and his wife Lucy literally made a new life together - they had a daughter before he died.
There is value without measure from reading the journey through terminal disease of such an articulate, thoughtful person. Not that he can explain the ineffable, but he opens up the internal dialogue to new places, new ideas.
The kinds of things Kalanithi writes about in When Breath Becomes Air are the same ones that nip at the edges of my consciousness almost daily, wondering when cancer or COPD or both will catch up with me for good. It's just that he states them better than I can.
Meanwhile, like Paul Kalanithi quoting Samuel Becket,
“I can't go on; I'll go on.”