ELDER MUSIC: Songs of Shel Silverstein
A TGB READER STORY: The Last Time

When Breath Becomes Air by Paul Kalanithi

“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.”

Comments

Thanks for this. I wonder If we're sometimes a little glib when we talk about an "acceptable quality of life." My healthy, 60-year-old mother would have said living in a nursing home, confined to a wheelchair, needing help to shower, all while losing her cognitive abilities, would be unacceptable. But the woman she became, living with all those things, said with great difficulty on her 90th birthday: "The thing is to stay alive. As long as you're alive, there's hope."

About 8 months later, she stopped making the effort to eat; her last words to me were "Mary, don't make me eat." She died shortly thereafter. It seemed to me that she somehow crossed over from being engaged with living to actively dying.

There's a lot to ponder in your post today, and a book to read.
Thank you, Ronni.

One of my favorite books. I read it when it first came out, again a year later.

This young man (and his family) is a gift to all of us. ✨

This post takes my breath away. Thank you.

Thank you.
o/

I read this book several years ago after I got my “severe lung damage” COPD diagnosis.
This was a heart breaking book but even more, it was enlightening ... even comforting.
Your quote “...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.” was a reminder of what I continue to try to explain to my husband ... who would have at home, not driving, not seeing my friends, who are a constant source of love and support. Thank you for this lovely reminder. ❤️

A beautiful book that helped me through a tough time. You quoted piecesthar have stayed with me for years. Live on!
a/b

I am breathless with your insight, thanks always.

I have not yet read this book, but what you have shared about the author leaves me, once again, in awe of the quandaries that life presents.

We are experiencing an unusually warm January here in northern IL and my kitchen this morning is full of sunbeams and rainbows. One would hardly know that the world is facing some of the most horrendous events in recent history. The wildlife and ecosystem of a continent are being destroyed by fire while everyone is waiting for the other shoe to drop in the middle east.

Meanwhile, millions of people all around the globe struggle with their own personal life threatening conditions. Yet people fall in love, get married and start new lives together, babies are born and future plans are made each day by vast millions. The life force is probably the strongest and most mysterious thing in the universe. I'm sorry that Paul Kalanithi did not solve the mystery of ". . . how the brain could give rise to an organism capable of finding meaning in the world.” As the Danish scientist and poet Piet Hein wrote in one of his little poems which he called grooks ('gruks' in Danish):

"I'd like to know
what this whole show
is all about
before it's out."

What an insightful post, thank you Ronni. And a new important book to be read. You are a gift to us all.
"But my God life is powerful. You might even say that life has a life of its own."
Beautiful, and all the rest as well.

My life, though so much "smaller" than in the past...........is so much more beautiful and meaningful. Yesterday, after a New Year's Day luncheon, I decided it was time to come up with answers for "What are you DOing, are you TRAvelling?" I stand smiling, befuddled, feeling somehow less-than. But when my secret life is in sway, oh the inexplicable wonder and beauty, and sometimes terror! Big, very big.

Your words and Paul's have guided me to an edge...
for I cannot come any closer to understanding death, than right now.
And my heart is nonetheless grateful to be so close to such a mystery.

What treasures that book and its messages are, and what a treasure he must have been for his family and friends. I'm sure he is still a treasure to all who knew him or read his book. It feels like it was a waste to have such a treasure pass from mortal life.

I loved that book. Gave it to several friends. Know too, I'm not quite ready for it.

I'm sure it opened to you at the moment for which it was meant. Amazing, isn't it?

Lucy Kalanithi's sister has a blog (Cup of Jo). In her blog, she wrote Lucy's advice on how to write a condolence note.

Have you read "Being Mortal" by Atul Gawande?

I read Dr. Kalaniti's book the year it came out. After reading your experience with it, I know it is time to read it again.. This time it will be with electronic assistance. There was a time when I felt I could NOT have a meaningful life without reading. I am older, now, and afflicted with Macular Degenaration. And I have adjusted. While I am still alive, I want to live. Thanks, Ronni, for reminding us of this remarkable young man and his wisdom.

Thanks for this, I just ordered this book. Ponder I do, looking for some light in those hidden corners of my being.

I was not aware of this book’s content although I had heard the title some time ago and found it poetic. Thanks, Ronni. There is so much you (continue to) teach me. It appears Mr. Kalanithi was a brilliant young man. And one of your commenters posts that the author’s sister-in-law writes another blog I enjoy.
We are all connected.

Thank you Ronni, for this lovely enlightening post.  And  also Cathy J. for reminder me of this man. I, too, was a fan of Piet Heim's "Grooks".

Perhaps mortality is, after all, the legacies that endure from all the fine writers like Dr. Kalanithi, and so many more we cherish now.

Published in 1969, "Grooks" were a refreshingly different look at the world from a scientist, architect, and poet. So succinct, clear minded and to the point. Simplicity in print. They also have an interesting history to those interested in such things.

One I want to share comes often to mind at this end of life as I make the difficult end time decisions.  It is amazingly helpful in ways its simplicity would belie. Try it once before laughing.;-)

A Psychological Tip...
Whenever you're called on to make up your mind
and are hampered by not having any, 
the best way to solve the dilemma,
you'll find,is simply by spinning a penny.

No-not so that chance shall decide the affair
while you are passively standing there moping;
but the moment the penny is up in the air,
you suddenly know what you are hoping.   Piet Hein  

Ronni, thank you for your heartfelt response to Dr. Kalanithi's beautiful memoir. I read it shortly after publication and probably should reread it. His insight as a doctor and patient is so helpful as we navigate the inevitable.

We read and discussed the book as a group a couple years ago, when I worked at our local senior center. We followed it up with a video of an interview with Dr. Kalanithi's wife, Dr. Lucy Kalanithi. I couldn't locate that particular piece at this time, but notice there are many others now. She is carrying his message forward in a heart- and soulful way.

So much of the depth of feeling expressed in these comments is from female Ronni followers, maybe 10% males, on a good day, which says something. I can't even begin to attain such goodness, warmth, sincerity and articulation of feelings.

Thanks Ronni - I so enjoyed the book when I read it on publication ... now I must read it again. Excellent post - thank you ... and your commenters/friends are just wonderful to read too ... cheers ... wonderful post - Hilary

The honesty and depth of this post and the thought-provoking comments have struck a deep chord in me. My experience with life threatening illness has, so far, been second hand. Even at this distance, it is bewildering to be conscious of my mortality.

Quite a few in my circle of family and friends have died and nearly all of them expressed the desire to continue living, despite (what looked to me like) devastating limitation and illness. Only my father, age 90 and depressed by the recent death of my mother, expressed the desire to “get to the other side” as he put it.

Our passion for living truly has a life force of its own.

I loved this book so much. He shared his experience so generously, so intimately. After it ended—after he died—I missed him like a friend. I wonder if I can bear to read it again.

Thanks be we still have you, Ronni. You're giving a lot, you've already given so much. That doesn't obligate you in any way. It's just that your continued life is meaningful beyond yourself and will continue to be lastingly meaningful after it is over. I hope you have the peace you have earned by doing that. I can't imagine whether you do or not, because I worry that I will be too aware of all I didn't do.

I've lain awake sometimes and felt my every cell seething, simmering, scintillating with life. (I can't quite get the one right word.) It may be from that level that the life force springs. Life has a fierce drive to keep living. It's as powerful as the core of the sun.

A comment on John's comment:

John, feeling is women's traditional "turf"; we are encouraged from early on to examine and express our emotions. Because that turf has been assigned to us, and because men have had to be tough to protect their families, risk danger, and (alas) fight wars, feeling is labeled "feminine" and men aren't encouraged to develop and explore that aspect of themselves. (This is changing, but tradition has immense inertial momentum.)

Maybe for just that reason, in my experience men's emotions are extraordinarily pure and sincere, directly heart-felt, not (as I sometimes feel my own to be) processed through a practiced mind.

And finally: a sampler of more Piet Hein, because, trust me, you haven't had enough. He is unbelievably delightful. Thank you, Cathy, for the tip.

One of the most poignant moments in the book is when he sees his own test results and knows his cancer has returned. Knowing that his career as a neurosurgeon is over, the next day he does his last surgery. How many of us appreciate when we do something for the last time? Usually, we aren’t aware of it. I try to be more mindful at special moments that this may be my ‘last time’.

Annie G. John writing.
Thank you very much for your highly enlightening and, in my opinion, clearly accurate explanation for differences between men and women in expressing emotions and feelings. I am so very impressed with it and also enlightened from it. And, the beauty of it is that you actually defined the roles of the sexes and why our approaches differ, although you point out some male progress toward ease of expressing emotion and feelings, all in a positive light. How encouraging to read. John

Ah, once again...this post, the subject of the post, and the comments...all treasures! Thank you.

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