This Is What Makes Life Worth Living in the Face of Death

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. Dying in one’s fourth decade is unusual now, but dying is not.

I was driven less by achievement than by trying to understand, in earnest: What makes human life meaningful? I still felt literature provided the best account of the life of the mind, while neuroscience laid down the most elegant rules of the brain.

Throughout college, my monastic, scholarly study of human meaning would conflict with my urge to forge and strengthen the human relationships that formed that meaning. If the unexamined life was not worth living, was the unlived life worth examining?

The problem with medicine and the institutions it has spawned for the care of the sick and the old is not that they have had an incorrect view of what makes life significant. The problem is that they have had almost no view at all. Medicine’s focus is narrow. Medical professionals concentrate on repair of health, not sustenance of the soul. Yet – and this is the painful paradox – we have decided that they should be the ones who largely define how we live in our waning days.

While all doctors treat diseases, neurosurgeons work in the crucible of identity: every operation on the brain is, by necessity, a manipulation of the substance of our selves, and every conversation with a patient undergoing brain surgery cannot help but confront this fact…At those critical junctures, the question is not simply whether to live or die but what kind of life is worth living. Would you trade your ability – or your mother’s – to talk for a few extra months of mute life? The expansion of your visual blind spot in exchange for eliminating the small possibility of a fatal brain hemorrhage? Your right hand’s function to stop seizures? 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?

My brother Jeevan had arrived at my bedside. “You’ve accomplished so much,” he said. “You know that, don’t you?”

I sighed. He meant well, but the words rang hollow. My life had been building potential, potential that would now go unrealized. I had planned to do so much, and I had come so close. I was physically debilitated, my imagined future and my personal identity collapsed, and I faced the same existential quandaries my patients faced. The lung cancer was confirmed. My carefully planned and hard-won future no longer existed.

While being trained as a physician and scientist had helped me process the data and accept the limits of what that data could reveal about my prognosis, it didn’t help me as a patient. It didn’t tell Lucy and me whether we should go ahead and have a child, or what it meant to nurture a new life while mine faded. Nor did it tell me whether to fight for my career, to reclaim the ambitions I had single-mindedly pursued for so long, but without the surety of the time to complete them.

Like my own patients, I had to face my mortality and try to understand what made my life worth living…

Grand illnesses are supposed to be life-clarifying. Instead, I knew I was going to die – but I’d known that before. My state of knowledge was the same, but my ability to make lunch plans had been shot to hell. 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 go 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?

And so it was literature that brought me back to life during this time. The monolithic uncertainty of my future was deadening; everywhere I turned, the shadow of death obscured the meaning of any action. I remember the moment my overwhelming unease yielded, when that seemingly impassable sea of uncertainty parted. I woke up in pain, facing another day – no project beyond breakfast seemed tenable. I can’t go on, I thought, and immediately, its antiphon responded, completing Samuel Beckett’s seven words, words I had learned long ago as an undergraduate: I’ll go on. I got out of bed and took a step forward, repeating the phrase over and over “I can’t go on. I’ll go on.”

That morning, I made a decision: I would push myself to return to the OR. Why? Because I could. Because that’s who I was. Because I would have to learn to live in a different way, seeing death as an imposing itinerant visitor but knowing that even if I’m dying, until I actually die, I am still living.

Years ago, it had occurred to me that Darwin and Nietzsche agreed on one thing: the defining characteristic of the organism is striving. Describing life otherwise was like painting a tiger without stripes. After so many years of living with death, I’d come to understand that the easiest death wasn’t necessarily the best. We talked it over. Our families gave their blessing. We decided to have a child. We would carry on living instead of 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 sated 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.