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What Makes Life Worth Living In The Face Of Death

Updated: Jan 27, 2018

When Breath Becomes Air is a book by Paul Kalanithi that recounts his life before he was diagnosed with cancer and right after until he died two years after his diagnosis. In the first part of the book, Paul gives a quick background of his life growing up in the desert of Arizona after moving from a suburb in Westchester County and then talks mostly about his life when he is training to be a doctor.

If you aren’t familiar with the patient and doctor relationship that doctors experience then this book will give you a lot of information about it. Paul talks a lot about this relationship because he spent the majority of his life wondering about death and the meaning of life. The patient/doctor relationship answered a lot of these questions for him because cancer and damage to the brain are life threatening so this really forces the patient to think hard about what is meaningful in his or her life. That patient is going to be relying on the doctor a lot to help guide him through that experience.

“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.”

The field that Paul is in is neurosurgery and this is one of the most difficult fields in medicine because of the training and risks that the doctor faces. Most people in their earlier years of this field leave and switch to an easier one. Neurosurgery requires long hours. The doctors can sometimes be in the operating room for 8 hours straight or be at the hospital for 36 hours with very little sleep. Plus there are high risks in this field due to the fragility of the area that a neurosurgeon is operating on.

The brain is the control center of our most common actions such as speech, emotions, and thinking. The slightest error could have serious consequences and it is the doctor’s job to understand and explain the risks to their patients.

Paul describes a time when a really cute boy who was well behaved had a tumor in his brain and after the boy’s family discussed the options and the risks involved with removing the tumor, the family decided that it was best to proceed with the operation. The doctor successfully removed the brain tumor but the boy ended up returning to the hospital four years later due to damage to a part of his brain called the hypothalamus. The hypothalamus regulates some of our basic drives such as sleep, hunger, thirst, and sex.

Here’s Paul’s recount from his book:

“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.”

The second half of the book is about Paul switching roles from doctor to patient. He spent 10 years training to be a neurosurgeon which required him to guide patients and their family through the really hard period of facing death. Paul all of a sudden started to experience severe pain in his back and started to become really weak at times. He then, in a really unfortunate turn of events, discovered that he had cancer and that now after just reaching the peak of his career, he — like so many of his own patients that he counseled — must face his own death.

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.”

There is a lot that can be learned from Paul’s book about facing death (especially at such a premature age) and about the meaning of life. At the beginning of his book, Paul discusses some confrontation that he was having with his wife. They were scheduled to travel together but his wife, Lucy, was having second thoughts and didn’t want to travel with him. She felt that Paul was working long hours at work and he wasn’t being as open with her as he could have been.

I’ve experienced situations of my own where I don’t open up and I focus the great majority of my time on my career instead of family and other things that should take precedent so I don’t think this is uncommon. This has a lot to do with forgetting what is most important in life and there is nothing like someone telling you that you don’t have that much time left to live to help you refocus.

As the book goes on you understand that the love that Paul and Lucy share goes a lot deeper and gets much stronger. Here is a passage from 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.”

We tend to procrastinate and push the important things in our lives to the future because of our perception of time. We just think that we have a lot more time. Paul talked about how he had plans to have a kid but was going to hold off until after he finished his residency training, was more settled down, and wasn’t working so many long and excruciating hours. Once he was diagnosed with cancer though, he realized that he didn’t have much time left and after talking it over with his wife, they decided to have a daughter now. Here is what Paul wrote to his daughter as he was nearing the end:

“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.”

One of many important lessons that I learned from Paul is to find out what the most meaningful things are in life and to get started now because later may be too late. Activities become a lot more difficult to handle if one is diagnosed with a terminal illness. One reason is because of fatigue and the other is due to the uncertainty of how much time is left.

“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.”

I want to admit that I was a little disappointed at first after reading about 60% of this book. The reason is because there was some talk about the author’s background and a lot about his life and training as a neurosurgeon but not as much as I would like about really delving deeper into the author’s thoughts about death and meaning in life.

Then it occurred to me that his book was unfinished because Paul didn’t have enough time. His illness was starting to progress as the treatments weren’t as effective as planned, and since he wasn’t sure about how much time he had left exactly, it was harder to plan. And that further stressed his point. Not only did he write about time and meaning in life, but his book signified it also.

His wife then confirmed my thought that Paul’s book was unfinished in the epilogue and she also added this later on:

“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.”

Paul died two years after he was diagnosed with cancer but he never knew how much time he had left. This is one of the most important struggles he faced. Paul said this about the uncertainty of how much time he had left,

“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?”

In addition to the uncertainty, Paul also felt so weak at times that he couldn’t read or write so this also prevented him from finishing his book. So whatever you’re putting off in life until later because you think you have more time or you are waiting for some catalyst to get you started, pick up this book to give yourself a reminder that life is shorter than you think and to give yourself a kick in the ass to get started now.

Below are some of the other passages (in Paul’s words, not mine) that I found important for myself:

Part I: Before Paul’s Diagnosis

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

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 Paul’s wife, Lucy)

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.

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