Touching book about death and the meaning of life. Highly recommended by Bill Gates and I believe it is a great book to get your mind thinking hard about how you're living your life. As you're reading how Paul was at the top of the world just moments before he started to feel terrifying pain in his back which wasn't too long before realizing he only had months left to live because of cancer, this book will help you reflect on your own life and make you question if you're really living it the way you really want to. It will also give you a little nudge to make some changes if you aren't.
Part I: Before Paul’s Diagnosis
The brain surgery is usually the most dramatic event they have ever faced and, as such, has the impact of any major life event. At those critical junctures, the question is not simply whether to live or die but what kind of life is worth living.
One day, Matthew, the little boy with the brain tumor who had charmed the ward a few years back, was readmitted. His hypothalamus had, in fact, been slightly damaged during the operation to remove his tumor; the adorable eight-year-old was now a twelve-year-old monster. He never stopped eating; he threw violent fits. His mother’s arms were scarred with purple scratches. Eventually Matthew was institutionalized: he had become a demon, summoned by one millimeter of damage. For every surgery, a family and a surgeon decide together that the benefits outweigh the risks, but this was still heartbreaking.
I had come to see language as an almost supernatural force, existing between people, bringing our brains, shielded in centimeter-thick skulls, into communion. A word meant something only between people, and life’s meaning, its virtue, had something to do with the depth of the relationships we form. It was the relational aspect of humans — i.e., “human relationality” — that undergirded meaning. Yet somehow, this process existed in brains and bodies, subject to their own physiologic imperatives, prone to breaking and failing.
This is how 99% of people select their jobs: pay, work environment, hours. But that’s the point. Putting lifestyle first is how you find a job — not a calling.
How much neurologic suffering would you let your child endure before saying that death is preferable? Because the brain mediates our experience of the world, any neurosurgical 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?
As my skills increased, so too did my responsibility. Learning to judge whose lives could be saved, whose couldn’t be, and whose shouldn’t be requires an unattainable prognostic ability. I made mistakes. Rushing a patient to the OR to save only enough brain that his heart beats but he can never speak, he eats through a tube, and he is condemned to an existence he would never want.
I had started in this career, in part, to pursue death: to grasp it, uncloak it, and see it eye-to-eye, unblinking. Neurosurgery attracted me as much for its intertwining of brain and consciousness as for its intertwining of life and death.
As a resident, my highest ideal was not saving lives — everyone dies eventually — but guiding a patient or family to an understanding of death or illness.
Being with patients in these moments certainly had its emotional cost, but it also had its regards. I don’t think I ever spent a minute of any day wondering why I did this work, or whether it was worth it. 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. 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 decision to operate at all involves an appraisal of one’s own abilities, as well as a deep sense of who the patient is and what she holds dear.
Doctors in highly charged fields met patients at inflected moments, the most authentic moments, where life and identity were under threat; their duty included learning what made that particular patient’s life worth living, and planning to save those things if possible — or to allow the peace of death if not.
Our patient’s lives and identities may be in our hands, yet death always wins. Even if you are perfect the world isn’t’. The secret is to know that the deck is stacked, that you will lose, that your hands or judgement will slip, and yet still struggle to win for your patients. You can’t ever reach perfection, but you can believe in an asymptote toward which you are ceaselessly striving.
Part II: After Paul’s Diagnosis
[As Paul was facing death he said,] “I was physically debilitated, my imagined future and my personal identity collapsed, and I faced the same existential quandaries my patients faced.”
[Paul wrote this to his daughter before dying] When you come to one of the many moments in life where you must give an account of yourself, provide a ledger of what you have been, and done, and meant to the world, do not, I pray, discount that you filled a dying man’s days with a stated joy, a joy unknown to me in all my prior years, a joy that does not hunger for more and more but rests, satisfied. In this time, right now, that is an enormous thing.
I had mapped out this whole forty-year career for myself — the first twenty as a surgeon-scientist, the last twenty as a writer. But now that I am likely well into my last twenty years, I don’t know which career I should be pursuing.
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 having to learn how to budge. 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.
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?
Like my own patients, I had to face my mortality and try to understand what made my life worth living — and I needed Emma’s help to do so. Torn between being a doctor and being a patient, delving into medical science and turning back to literature for answers, I struggled, while facing my own death, to rebuild my old life — or perhaps find a new one.
It had occurred to me that Darwin and Nietzsche agreed on one thing: the defining characteristic of the organism is striving.
I had learned something, something not found in Hippocrates, Maimonides, or Osler: 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.
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.
Part III: Epilogue
[Written by the Paul's wife, Lucy, in the Epilogue]When Paul emailed his best friend in May 2013 to inform him that he had terminal cancer, he wrote, “The good news is I’ve already outlived two Brontes, Keats, and Stephen Crane. The bad news is that I haven’t written anything.” His journey thereafter was one of transformation — from one passionate vocation to another, from husband to father, and finally, of course, from life to death, the ultimate transformation that awaits us all.
[Written by the Paul's wife, Lucy, in the Epilogue] This book carries the urgency of racing against time, of having important things to say. Paul confronted death — examined it, wrestled with it, accepted it — as a physician and a patient. He wanted to help people understand death and face their mortality.
[Written by the Paul's wife, Lucy, in the Epilogue] We each joked to close friends that the secret to saving a relationship is for one person to become terminally ill. Conversely, we knew that one trick to managing a terminal illness is to be deeply in love — to be vulnerable, kind, generous, grateful.