When Breath Becomes Air recounts the life of Dr. Paul Kalanithi, a neurosurgeon diagnosed with lung cancer during his last year of residency. With elegant and beautiful prose befitting a novelist more than a doctor, Paul guides readers through his life before and after his diagnosis, a life marked by a search for understanding life, death, and meaning.
As a young man, Paul never considered becoming a doctor, a profession many in his family had chosen. Thanks to his mother’s determination to see her three sons surpass the boundaries that a rural education in Kingman, Arizona could provide, she instilled in them a love of books. Paul quickly became enraptured by literature and decided to follow that love through his undergraduate and graduate studies at Stanford University.
Along the way, Paul also became fascinated with the brain. He wanted to understand how this organism was involved in creating meaning in life. Therefore, coinciding with his literature studies, he also studied biology. These two passions would guide the rest of his life. Through literature, he wanted to find language that gave depth to human experiences. Through science, he wanted to find the boundary separating life from death and what constituted each. When words became insufficient, he decided to enroll in medical school to become a neurosurgeon.
Throughout the book, Paul takes us on his journey through medical school and into his practical training as a neurosurgical resident. He walks us through his work with patients, learning, sometimes the hard way, that there was more to being a doctor than merely diagnosing and treating. He became a beacon for his patients, providing a safe harbor for them to traverse the transition from the life they had to whatever lay on the other side after a traumatic brain injury or disease.
Paul’s work allowed him to face death on a daily basis. He didn’t view death as an enemy to be thwarted. Rather, he saw it as one side of the coin of life and often as the most humane decision for those whose lives would never be the same because of their diagnosis. In approaching death in this way, he was able to face his diagnosis of lung cancer with integrity.
When he was diagnosed, Paul learned the difference between facing death as a doctor and as a patient. Although he’d assisted patients and their families in learning how to move forward and forge a new life or accept the end of life, he wasn’t clear at first what his new life would be. His identity, a concept he cherished and used to guide his treatment of patients, was wrapped up in the future he’d planned with his wife, Lucy.
As that future slowly disintegrated, he had to determine who he could and should be with the time he had left. Should he dive into the personal and spend the time with family, friends, and his new child? Should he move into a teaching role? Or should he be a neurosurgeon again? In the end, his calling as a neurosurgeon won out, and he continued that work until his cancer relapsed and ended his career for good.
Paul’s memoir is about his personal journey of discovery as much as it is a dissertation on what it means to live and die. He believed that human relationships and experiences gave life purpose and depth, and he strove to celebrate both in his life and the life of his patients. The legacy Paul left behind exemplifies the strength and wisdom possible in accepting the inevitability of death and living despite it.
This summary of When Breath Becomes Air is written in a way that allows you to share in the experience provided by the memoir. Most of the beauty in this book comes from the relationship formed with Paul as you walk in his shoes. His personal stories and observations are strengthened by his thoughtful voice and elegant prose.
Therefore, simply reading about the content of the story seems insufficient in expressing the emotional journey. To really provide you with the sensation this book creates, we wrote in the first person, using a voice similar to his. The hope is you will be able to form that personal attachment with his story and be taken on a similar journey. As usual, if you enjoyed this summary, we highly recommend reading the original book for the full experience. Reading the words coming directly from him is a powerful experience we can’t replace.
The original book is written in two major parts. To make it more digestible, we’ve divided them into smaller chapters. Chapters 1-4 correspond to Part 1, and Chapters 5-8 correspond to Part 2.
As a neurosurgical resident about to graduate and move into the role of doctor, I knew what the signs of cancer were. When I looked at the CT scan, at the lungs, the spinal cord, and the liver, the diagnosis became clear. I’d looked at similar scans over the years of my training, but those scans always belonged to others. They weren’t like this scan, which belonged to me.
My wife, Lucy, a doctor of internal medicine, and I had noticed the signs during the past 12 months, but neither of us vocalized our suspicions. I didn’t want to admit what the amount of weight I’d been losing or the immense back pain I had started experiencing added up to.
I’d had X-rays done because MRIs for the back were costly, and the results were normal. I knew that X-rays for cancer were more or less futile, but I still took the results and ran with them. Afterall, cancer at thirty-six was not common, especially cancer in the spine. I assumed it was a different type of spinal disorder because even if the odds of cancer were better, they still weren’t as good as other disorders. My training had taught me enough to know that. I accepted the explanation of aging and fatigue and went back to work.
Work was where I wanted to be. I’d spent ten years traveling a straight path from medical student to neurosurgical resident, and with graduation only a year and a half away, my rise to the more comfortable life of neurosurgeon and professor was almost realized. When that happened, my schedule would settle down. I could finally have a more stable life and a rested body and be the husband Lucy and I both wanted me to be.
But after another few weeks, the pain was not only in my back. I started experiencing significant chest pain. I was coughing relentlessly, and I dropped thirty pounds. I knew the odds were not in my favor.
I turned to the Internet, researching cancer in people aged mid- to late-thirties. Lucy discovered the search results and was livid. Her anger stemmed from my secrecy, from the fact that she had been managing her fears while I’d been managing mine. She was angry about what felt like a betrayal, not of my confidence, but of the drastic change in the picture of our life I was meant to create for us.
Her anger was so severe, she decided she needed time away from me, from our home, from our marriage. She didn’t feel we were balanced in our approach to our marriage. She felt like I wasn’t connected, wasn’t sharing my feelings with her, wasn’t taking her feelings seriously.
In truth, my training to be a neurosurgeon, one of the most taxing and challenging of the medical fields, had taken its toll on our relationship. Despite the fact that both of our futures were bright, I was a ghost in her life, coming and going from work while she slept, too exhausted after the day to make it to our bed.
We’d been scheduled to visit old friends in upstate New York, a trip Lucy was now going to skip. I said I would stay home, go to therapy, be more honest about my feelings, but none of it changed how she felt. She wanted space.
I agreed and accepted that the possibility of her leaving me was real and that our marriage might be over. I knew if that happened, I wouldn’t bother her with my yet-undetermined cancer diagnosis. I would let her go---let her find a happy life.
I didn’t cancel the trip. If I had cancer, it would likely be a long time before I could make the trip to see our friends. If things turned out for the better, than the trip could go on as planned.
I had a few tests done to eliminate the possibility of certain types of cancer, like testicular or leukemia, that occurred in young adults. All those tests were negative. But the pain in my back was intense. It had been growing steadily from minor discomfort to debilitating agony. When I reached Grand Central Station, where I would take the train north to my friend’s home, I could barely move.
I tried to lie down on a bench, but a security guard came swiftly over to admonish me. My brain immediately went to an excuse, the one that made the most sense, the one that said I was dying. I sat with that thought, but then another came, and this one reminded me that I had no proof of the worst. As a doctor, I obviously had a great grasp of back issues, had studied them, seen them, and heard what they felt like from patients. Maybe this was just what all those patients had been experiencing. Maybe I was just now able to understand it personally.
I wanted the vacation to bring my body peace. I wanted a few days of a regular pace of life---restful and calm---to alleviate the pain, but that didn’t happen. It became evident that the pain was not receding after the first couple of days.
Sitting around upstate, relaxing among my friends, I was reminded of a time when I worked at a summer camp and was reading a book on death surrounded by children running and screaming. At the time, I thought the dichotomy of their youthful exuberance amid my focus on the opposite was humorous. The current situation resembled the absurdity, except this time I was surrounded by my friends, healthy and living, while I sat removed in my bubble of death.
I called our host inside to tell him I was going home early. I told him the truth. He and I both heard the words that formed the likelihood of my impending cancer for the first time at the same time.
When I got home, I received a call from my doctor to inform me that the chest X-ray I’d had done before leaving seemed off. The lungs were murky, fuzzy. She said she couldn’t say definitively what the cause was, but that was likely not true. She knew, and so did I. And so did Lucy.
At that moment, everything we’d discussed regarding our marriage, all of the space that had been created between us, ceased to exist.
I went to the hospital and lay on the bed in a room I was all too familiar with. I had been a doctor in this room, served as a guide for patients diagnosed with incurable diseases, explained procedures, celebrated medical triumphs, witnessed the joys of patients who’d won their battles, watched others slip into the hands of death. I’d stared at this bed with envy when I felt almost too tired to move. Now I was in this bed, but sleep was the last thing on my mind.
Everything I’d worked for, the years, the toil, the training, the strain that was meant to equal the reward of my desired future, suddenly vanished.
I didn’t want to be a doctor. I didn’t know what I wanted to be. Maybe a writer, but the time when I’d have to decide on a career was far off. I was getting ready to leave for college in less than a month, and the only thing I was concerned about was how much I couldn’t wait to leave my small community in Arizona and enter the shiny world beyond it.
Plus, so many people in my family were doctors, including my uncle and father. From what I knew about it, medicine seemed to equate to long hours and time away from your family.
My father had moved my two brothers, my mother, and me from Bronxville, New York, a picturesque community north of the city, to Kingman, Arizona several years earlier. Kingman wasn’t on anyone’s radar except for as a place to pass through. The desert town was walled in by two mountain ranges. My father had loved the weather, the more reasonable prices, and the opportunity to build his own medical practice.
How he’d convinced my mother to move there was a mystery. A Hindu from southern India, she was deathly afraid of snakes, which were prevalent in the Arizona desert, among other creatures. My friends and I ran freely, roaming the expansive land in search of treasures. Compared to our previous buttoned-up, quaint, Norman Rockwell community, I was enchanted with the unruly terrain.
My father still worked often. He was something of a passing mirage, appearing in the evenings and on the weekends to provide whatever combination of affection and edicts he could fit in that amount of time.
My mother, on the other hand, became ingrained in our educational upbringing. She feared the lack of opportunities a school district like Kingman could offer her sons. She was well-educated, having trained to be a physiologist before marrying my father. But her knowledge of books was scarce, and she was determined to change that in our lives.
She dug up a list of recommended reading for prospective college students. She made sure we read each one on the list. At ten, I read 1984 by George Orwell, which helped curate my love for words. My brother, Suman, at college by the time I was twelve, also gave me the books he’d been reading. Brave New World instilled in me my moral compass. I would later write about it on my college applications, denouncing the popular belief that we only live to find happiness.
These books enriched my mind and became my guide for how to understand life.
Making sure we were well-read wasn’t the end of my mother’s pursuits. She became part of the school administration, organized the teaching staff, lobbied for advanced classes to be provided. She was a one-woman construction crew, and she reconstructed the Kingman school district into a place where the students started to feel like they had a chance. To ensure our chance at success, she drove us to Las Vegas a hundred miles away to take our placement tests.
The summer before I left for Stanford, my girlfriend at the time gave me a book, Satan: His Psychotherapy and Cure by the Unfortunate Dr. Kassler, J.S.P.S. by Jeremy Levin. It wasn’t like the rest of the books I’d read. It was about the brain and how the mind was strictly a mechanical function of it. This idea changed me. My love of literature was partly due to the way it cut to the core of human meaning. If the brain was responsible for operating this sense of meaning, I wanted to learn more about it. To my upcoming college courses in literature, I added biology and neuroscience.
My time at Stanford wasn’t geared toward figuring out a career path. What motivated me during those first years of college was a desire to understand the aspects of life that made it meaningful. I was working toward degrees in English and Biology, but I still felt literature was superior in illuminating the mind.
I had come to determine that meaning was intertwined with morality and human connection. Through literature, including the likes of T.S. Eliot, Elio, Nabokov, and Conrad, I learned about human suffering, isolation, despondency, and the fallibility of language and ensuing consequences. I became privy to the experiences of others and to the need to reflect on my reaction to them. Literature created a landscape for moral examination and for the expression of true life. But studying life is not the same as living life, and I was often conflicted between the academic work and the desire to put that work to practice by forming relationships. How could a life have meaning if it is not directly experienced in the flesh?
I was forced to answer that question during the summer between sophomore and junior years. I had the choice of working at a scientific research center in Atlanta or as a cook at a summer camp in the Eldorado National Forest. It was a choice between filling my brain with theories about meaning or filling my life with meaningful experiences. I chose the camp.
On my way there, I tried to discern if I’d made the wrong choice, but after arriving, I realized everything I wanted the camp to be was a reality. The scenery, the people, the connections and experiences---they were all beautiful. Standing on top of a mountain at sunrise, I saw the juxtaposition of light as the world woke up on one side and the darkness of the world still asleep on the other. It was a miraculous moment, one that makes you realize just how small you are amidst the whole of the universe.
Life was different once I got back to school, more enriching. I spent the next two years continuing my education of the relationship between the mind and meaning. Literature and philosophy offered in-depth exploration of the significance of life, and neuroscience helped me continue to examine how the brain related to that significance. All of this was happening while I forged deep friendships and curated deep life experiences.
It was during senior year when my neuroscience class took a trip to a facility that housed people with traumatic brain injuries. As soon as we entered, a visceral wailing met us. I looked around until I saw the source of the sound---a young woman curled up on the floor in the middle of an agonizing episode. I quickly recognized that we were the only non-residents in the place. When I inquired why, I was horrified to find out that many of the families of the residents had stopped visiting as frequently or at all.
I expected my professor to understand my disillusionment about the abandonment of these kids. After all, the crying girl had smiled at me. Didn’t she deserve people who cared about her? Imagine my surprise when this teacher, a person I knew to ponder how science and morality came together, said sometimes it’s better if patients like that don’t survive. I was livid and stormed out. But later, after thinking about it, I realized that experience had changed something in me. The brain houses our ability to relate and connect and make meaning of life. When the brain fails, we lose those things. I wondered: when those things are lost, is life worth living?
I couldn’t shake the feeling, as I got closer to graduation, that there was still more I wanted to learn. I decided to enroll in graduate school to continue my education on how literature relates to meaning. I was going after a master’s degree in English literature at Stanford.
I understood that language created our sense of significance and integrity. Language created bonds between people. From these ideas, I came to understand that human relationality was what engendered meaning. I started to consider that the brain was not solely representative of this process. The whole body was inextricably involved somehow.
A professor of mine, Richard Rorty, a masterful philosopher, helped me see that every discipline had a part in creating language that would serve as the function of knowing the meaning in life. I began to follow the work of Walt Whitman in his search to uncover the concept of “the Physiological-Spiritual Man.” I based my thesis on this work, but, like Whitman, I couldn’t concretely discern the proper words, or language, that adequately described this state of being.
I also discovered that literature, in the way it sharply deviates from science, was not to be the focus of my continued studies. Despite the positive response to my thesis, I’d included as much rumination on neuroscience and psychiatry as literature. I knew it was beyond the scope of the standard English department ideology. And so was I.
While my friends headed east to become artists, I was still pondering the intersectionality of biology with literature, morality, and philosophy. I wasn’t sure what the future held for me. Then, one day, I had a sort of divine epiphany---only by being a doctor could I come to learn the answers to my questions. As Whitman had stated, the physician is the only one who can truly discover the physiological-spiritual man. Despite my misgivings as a young man, I was going to become a doctor.
This choice wasn’t an easy one to make. It would require another year of school to get the proper credits just to apply, as well as an 18-month application process. I would also have to turn away from literature. But in doing so, I could start to seek answers from a relationship with those facing life and death.
Some professors felt that leaving academia was a hasty decision. They suggested I use the time I had to study the history and philosophy of science. I was accepted into a program at Cambridge University and headed off to England.
During the program, I became more convinced that to be able to gauge the moral aspects of life and death, I had to address it firsthand. Words were no longer suitable on their own. I finished the year-long program and returned to begin medical school at Yale.
There’s no way to truly capture the essence of what dissecting your first cadaver is like. Every medical student must traverse through this choppy terrain between life and science. In front of you lies a human that once housed a mind, meaning, breath, and dreams. Yet, at the same time, you see a mere specimen that you will carve up over a period of months to further your educational agenda. The pendulum swings between disgust and misconduct and inspiration and excitement. Eventually, the humanity is drained from you until all that is left is the cold, hard, pitiless face of knowledge and proficiency.
For me, anchored in a pursuit of morality and meaning, this dichotomy was difficult. I found I would often inflate the morose details of anatomy work to friends so I could feign emotion, despite the antithetical reality of how I felt in class.
Still, at times, I couldn’t help but remember that this mass of muscles, cells, and organs had once been a life, even if that remembering was only an admission of disregard. All doctors must draw this line between life and science. The invasion of the body and individuality, the things that are sacred to humans, is what practicing medicine is all about. Thus, the body becomes a mere tool and human suffering the mode of operation. Anatomy class was the vessel that changed us from empathic souls to hardened professionals.
Then, one day, I sliced into my donor, as we were instructed to call them, opening the chest in a way not instructed so I could more easily access other organs. The proctor was beside himself, not because I had performed the procedure incorrectly, but because I had done it without batting an eye. The horror and sorrow in his expression was the most significant lesson I’d learned thus far in my medical training.
In those first two years of med school, I saw how simple it was to view the work as merely that---work. But with the help of my girlfriend, Lucy, I came to see that every aspect of science correlated with an aspect of life. A wavy line on an EKG wasn’t just a heartbeat, it was life coursing through a body.
My comprehension of life, death, and meaning was sharpening. I recognized that the human relationality I’d pondered so often during my previous studies was exemplified in the relationship between doctor and patient.
With the help of Shep Nuland, an esteemed surgeon-philosopher who studied mortality and lectured at Yale, I came to realize that death was not a mystery, but a fact of life. During all of the time researching literature and the history of medicine to get at the truth of death, I had never come to understand it completely. But Nuland taught me that death can only be understood as an existential certainty and by coming toe-to-toe with it.
Death was a personal loss of life, but it was also the rudimentary natural ending of a living organism. Being a doctor, then, was serving as the gatekeeper, shepherding a life to either live another day or succumb to this universal fate. The responsibility of that role felt immense and heroic.
My third year of medical school, I began my hands-on education in obstetrics and gynecology. In this field, new life is the ultimate goal. I was working in the labor and delivery ward, where I witnessed this new life for the first time. I didn’t know at the time that I was also witnessing the first patient who would die.
The pressure on me was light. I was meant to observe and assist the residents and nurses when asked. But inside, the pressure was great. That I might be thrust into the void between life and death, be called upon to deliver a child on my own, was terrifying---more so because failure in this new reality equated to death.
My resident, Melissa, was monitoring the preterm labor of a young woman with twins. Viability starts at 24 weeks, and the twins were a day or two away from that marker. Keeping them inside for as long as possible so they could finish developing was the goal.
At some point in the night, the twins became distressed, requiring an emergency C-section for survival. I stood in the OR and watched as the surgeon cut into the uterus, exposing the face of one of the babies. Out came one baby, then the other, both purple, both no bigger than a handful. They were rushed to the NICU. Their organs were present but unable to manage the task of living.
I left the hospital that morning, feeling as inept as those organs in my role as a doctor. The physical manifestation of medicine was a far cry from the theoretical understanding learned in school. Yet, the next night I was back in the ward, being guided by my attendee as a viable baby was born. I held the baby and felt the tangibility of life in my hands.
After the procedure, I found out that the twins had died, one earlier in the day and one while I was delivering this other baby. The words of Samuel Beckett came to me: “One day we were born, one day we shall die, the same day, the same second….Birth astride of a grave, the light gleams an instant, then it’s night once more.”
I questioned whether the C-section was the correct call. Melissa told me it was up to the doctor’s discretion to decide whether distress in the womb was more advantageous than being born without a viable working system. The most significant decisions I’d ever made were about which sandwich to eat for lunch. I wondered if I would ever achieve that level of discretion. And I wondered how I could live with the responsibility and ensuing results.
It occurred to me that a keen knowledge of medicine wasn’t sufficient. I would have to gain wisdom, or a moral intelligence, to walk that fine line between life and death.
The fourth year of medical school brought decisions about specialties. Many of my classmates were selecting less-intense specialties, those with better hours, more money, and less stress. In those specialities, the responsibility for life was low.
I opted to choose neurosurgery, one of the most demanding specialties there is. My decision was motivated by an experience I had witnessing a pediatric neurosurgeon discussing a child’s tumor with his parents. I listened as he transitioned from physician, detailing the medical implications, to companion, respecting the personal, moral implications and guiding them through their fears.
I saw how the parents, distraught and frightened, were able to find emotional stability and fortitude for the journey that lay ahead. I realized that life, death, and meaning were issues grappled with more often than not within the context of medicine, but beyond that, there were existential factors at play. The body is an organism that will eventually succumb to physical laws, but the meaning encompassed in that body takes on its own trajectory.
Thus, neurosurgeons treat not only the brain, but also the spirit of the person. Every procedure affects the organism and the identity, and this latter aspect must be considered. The judgment call required of the doctor, then, is not simply about whether the physical life can be saved. We must also contemplate the quality of the life saved. Patients are confronted with the meaning of life, and doctors can help provide the facts to help them discover the answer.
This field would not only force me to confront the questions I’d been asking since undergrad, but also place me squarely in the space where the answers could be found.
Lucy and I were married and shortly moved to California to begin our residences. I was back at Stanford to begin the first of seven years of training. I quickly formed relationships with other residents: Victoria, who was at the same point as I was, and Jeff, who had a few years under his belt.
At first, residency seemed to be about paperwork. There were never-ending papers that needed to be pushed here or there, and I didn’t leave the hospital for two days. But I quickly learned to get through the paperwork more efficiently, until the never-ending stack only took an hour.
It was on a Tuesday that my first patient died.
Mrs. Harvey was eighty-two years old and seemingly healthy. She underwent minor surgery to remove a blockage in her bowels, and I checked on her Monday night. I went home happy that she was awake and stable.
Later that night, I received a call and was told she was crashing. I blurted out a series of tests to run and hustled back to the hospital. Nothing I did seemed to make a difference. To compound the situation, I was constantly being paged as the only general surgery intern on duty. I was rushing back and forth between an ER patient in severe distress and Mrs. Harvey’s room. Around sunrise, the ER patient was taken to surgery, and Mrs. Harvey had stabilized.
Again, I left the hospital only to be called back. The doctors in the ICU were performing CPR, and Mrs. Harvey came around again. But an hour later, she died. I teetered between frustration and sorrow. Suddenly, Mrs. Harvey wasn’t just information on paper. She’d become my patient, and I’d lost her. I knew, in that moment, I would never see paperwork as something to rush through. I would see it for what it was: a representation of a person balanced between life and death.
I would experience many more deaths my first year of residency. Sometimes, I could manage all of it, taking it in as I took in everything else around me. Other times, the graveness of death became so heavy, I felt like I was drowning in the misery of it and the misery of all involved.
The surgical resident rotation was intense, and the schedule started to wear on me. We were working endless hours, sometimes one hundred a week, and it seemed like the work was never done.
Some couldn’t hack it. They crumbled from the pressure or didn’t know how to accept the culpability involved and left the program. The weight of the responsibility was immense, and as my skills improved, my responsibility increased. Determining the likelihood of survival was matched by the need to determine the viability of survival. Saving a patient meant saving the patient’s ability to not simply exist, but to live. Doing otherwise felt like a bigger catastrophe than death.
Neurosurgery was my avenue to understanding the intricacies of death as much as the connection between the brain and the mind. I’d thought being on the frontlines of death would change me, make me understand what it meant to live and begin living better. Certainly, if one is confronted with life and death decisions day in and day out, some sort of awakening must follow.
Instead, I started to wonder if my role as gatekeeper was normalizing the scenario. Or, perhaps, it was keeping me at a safe distance from the battle, like a general atop a horse on a hill. I was around death, near dying patients. I was there to witness their greatest moment of grief and suffering. But I wasn’t fighting next to them---just organizing and observing the fight. My life went on the same. I was forming relationships with others on the outskirts, bonding over our duties to the dying. I had found a way to adapt my baseline of normalcy to the environment around me.
This perspective became clear one night after a motorcycle trauma came into the ER. I was in the middle of “dinner”---an ice cream sandwich and soda. I stashed the items on the side of the trauma room and went to work.
It became clear the motorcycle patient would not survive, even if we could get him to surgery. After we pronounced him dead, I left the room. But a second later, I remembered my discarded dinner. I snuck back in and retrieved the items, saving the ice cream sandwich before it became a melted mess in front of the body that could not be saved. At that moment, I contemplated whether my morality had gotten lost amidst my professional acumen.
Everything changed after the news of a friend’s death reached me. I’d known Laurie in medical school. She’d made it through surgery after being hit by a car but died the next day. I didn’t ask any questions or for any particulars about her case. The time when a car accident was just a car accident was gone. A car accident now conjured all the pictures I had in my head of procedures, processes, and possible injuries that would lead to death. I had all the information I needed as a doctor to understand Laurie’s death. I understood it as I would any other patient.
Each moment that I had failed to recognize the patients I saw as people, as priorities, as suffering individuals worthy of empathy and focused care, flooded my mind. I had moved through patients’ pain, worries, and diagnoses like a worker on a factory line. I felt crushing guilt. I had failed to recognize the significance of the situation and their lives. I was turning into Tolstoy’s cliche of a doctor: mechanically treating disease without noticing the individual.
Human relationality was once of great importance to me, but I had forgotten it amid the harried world of diagnosis and prognosis. It wasn’t sufficient to just be an excellent surgeon. I had to be an excellent physician, which meant guiding those in my care, including families, to a place where tragedy can be comprehended.
This role, the pastoral one, became my highest priority, for often the families are equally blinded to delicate facets of life and death. They look at their sick or injured loved one and see the person they were, the life they lived, and the memories they shared. It was a sight of the past, whereas I understood the realities of the future.
I could use this knowledge to help these families understand that, with severe brain trauma, the body in front of them no longer contained that image from the past. The questions were all about the future: whether their loved one could have one and whether they should. Because only the family knows for certain if a dramatically altered quality of life would be worth it, or whether death would be preferred. It was their decision, and I wanted to serve as an usher to help them make it.
In this new role, I no longer spewed risks and statistics like an auctioneer. I became a sort of ambassador or companion. I met the patients and families at the apex of their grief and provided what I could to help them see the best way through it.
I was taking full ownership of every aspect of my patients’ care by this point. I thought about my father and the way he fostered trust and real connection with his patients. I was motivated to do the same.
I felt this type of work was particularly important for the neurosurgeon, because brain injuries, more than most, confound reason. The body can still be alive with the help of machines---the chest still moving up and down, blood still circulating---even when the patient is brain-dead. Death with a beating heart is not an easy concept to take in.
I had come to understand two things about informing patients of diagnoses and prognoses. First, statistics have no place in the doctor-patient relationship. And second, being honest about the gravity of the situation is necessary, but so is allowing for hope. For these reasons, I determined that approaching diagnoses a spoonful at a time was the best way forward.
For instance, a patient was referred to me after an MRI, but no one had informed her what the results showed. Doctors often push the task of delivering hard news to another. I would not be that kind of doctor, not anymore at least.
I could tell right away from the scan that this woman had an aggressive form of brain cancer. I was careful when delivering the news, allowing the emotional states of the woman and her husband to guide my words. As soon as they heard the words “brain cancer,” they would likely not hear anything else.
Human relationality requires honesty, but honesty doesn’t mean overwhelming patients with a giant bolus of mortality. It is not uncommon for patients and families to tune out and lose their tongues after receiving bad news. At these moments, all there is to do is take their hand and guide them as far as they can go until they’re ready for more.
Yet, making human relationality a priority was difficult, and doing so had consequences. Meeting patients in the foggy space between the past and future was emotionally taxing. I didn’t realize how much so until I was driving home one night in my third year and realized I was crying. But still, I never questioned the work or the value in it. The call to be a neurosurgeon---as it is a calling---is a virtuous endeavor, not simply because of the lives we are able to save, but because of the identities we are tasked to maintain.
Before any surgical procedure was performed, I needed to get a sense of that person’s identity. I needed to know their mind, what they valued, what they lived for, what they could live without, and what they couldn’t. Taking on that burden is a costly venture, for success in surgery is not guaranteed. And in those moments, the ones where we fail, the guilt is immeasurable.
Part of the neurosurgical residency training is taking time to train in another field. The standard of excellence is high in neurosurgery; thus, the expectation is for you to be well-rounded and excellent in all aspects of medicine to fully excel.
I chose to move into one of the most difficult, yet highly regarded roles: that of neurosurgeon-neuroscientist.
I moved to a laboratory at Stanford to work with scientists focused on the development of neural prosthetics. These devices could allow those without motor functions to control things in the outside world with their minds. The brain sends signals out to sensors that activate the command. What I wanted to do was the opposite. I wanted to manipulate the signals within the brain, a process called neuromodulation.
The possible benefits of neuromodulation were vast. Successful manipulation of neural activity could help treat a number of conditions of the brain and mind, such as OCD, depression, or Huntington’s disease. I set to work learning and experimenting with cutting-edge research. However, a year in, V, the head of the lab, told me he had pancreatic cancer. After he told me, he asked me if I thought he’d made the right choices---whether his life had meaning. I had always considered V to be a sort of moral guide, and it was shocking to hear him question meaning, as I had so often, now that he was facing death.
After a long and difficult treatment, V was in remission. He came back to work after a year, when I was preparing to head back to surgery. At the last of what had been weekly discussions, he told me that today was the first day the suffering he’d endured felt worth it. I understood then that no matter how far down I had to go to meet my patients where they were, I would never truly understand, as a mere doctor, their cost of living.
The concept of time ceases to exist in the OR, or at least not in the way it exists for everyone else. To be a good surgeon, you had to be efficient, swift, but not careless. It was a fine line, for the priority was on speed. Speed ensures that patients don’t experience distress or damage during long procedures. Speed also ensures that surgeon’s and supportive OR staff make it home in time for dinner.
One could approach surgery like the old story of the tortoise and the hare. You could move fast, seemingly out of control, making small movements at a time to ensure success. Or you could be more methodical, allotting time to organize your movements, then performing them perfectly and efficiently. Either way, there is no sense of how much time is going by while you’re in it. Time becomes an illusion, and you remember it only after you are finished, when the hours catch up to real time, knocking into you, knocking you down.
I became chief resident my final year, which meant more responsibility, and not just on my cases. The bar for success had been raised, and conversely, so had the ramifications of failure. Everything I had learned, technically and personally, were wound together. All of it carried a moral weight. The threshold between life and death, that narrow space, required dedication to my skills and to my patient’s identities. Whether to proceed with surgery or not dictated an appraisal of both.
I was riding high. I was performing my surgical duties with mastery, and my research was highly respected. Surgical departments were vying for my abilities, but the position I wanted was the one right where I was. Stanford was looking for a neurosurgeon-neuroscientist to study neuromodulation. I knew I was perfect for the role, and they did, too. I was starting to get a clear picture of what this world was about and how I fit into it.
My friend Jeff, from my early years of residency, wasn’t so lucky. Following the death of a patient due to complications from a surgery he’d performed, he took his own life. I understood the guilt he must have experienced. But I’d also learned that in the battle between life and death, there were other forces at play. We may be the gatekeepers, but we were also human.
We had to remember that death was an inevitability. Even if we were technically excellent. Even if we were morally considerate, sometimes people die, as we all will.
Understanding this unwavering fact doesn’t mean we are weak or not committed to our responsibilities. It simply means we understand what we are up against and continue to forge our way through despite it. We might not always win, but we keep trying regardless.
I’d spent so much of my training learning to account for patients’ identities in my surgical decisions. Yet, in that familiar hospital room, now as a patient, with Lucy next to me, I could feel my identity, that of physician, slipping away. She and I both knew what my scans showed. Cancer lived inside me, had found a number of cozy corners to nestle into. The life I’d been working toward, the role I was going to play in the world, was disappearing.
I’d counseled a number of patients, guided them through the dark so they could see their new futures. But in that instance, I was no longer the guide. I was aimless, lost and unable to find a new path or even see what that new path should look like. My lung cancer diagnosis didn’t sharpen my view on life. It blinded me to life.
Death, which I had turned from a foe into a sometimes necessary associate, no longer waited at my side with deference. Death now sat across from me, and I didn’t know how to address it anymore. I didn’t know how to find the words with which to negotiate. It was as if I was being introduced to death for the first time, and the code of conduct was still unknown.
Lucy and I met with the doctor who would see me through my illness, Dr. Emma Hayward. She discussed the diagnosis with us, but she wouldn’t discuss a prognosis. She focused on how we should approach treatment so I could return to work. I thought she was out of her mind. Surely, returning to work was not an option. I knew it was an option I couldn’t even consider without knowing where I stood within the threshold I’d met so many patients at.
My network of support went to work, researching oncologists specializing in lung cancer to ensure I had the best care possible. The results of those searches all came back to the same place. Emma was the best and was respected as such within the medical community. She wasn’t just respected for her skills as a physician, however. She was also considered to be the best gatekeeper, the best judge of not just treatment, but of identity, as well. I couldn’t help but see the series of events that had landed me in this hospital and in the care of the best person in the world at the exact time I needed her as more than coincidence.
I was beginning to deteriorate, my body weakening. The identity I’d had, that of pursuer of meaning and overseer of life and death, was being stripped away. The cancer was progressing, and I knew I was inching closer to death each day. That reality took over the responsibility I’d carried in my work. It felt like I’d been driving in search of a rest stop for miles only to lose my bladder the moment one came into sight. The need for me to be strong for my patients was gone. My body no longer needed to be resilient. It was letting go---giving up the fight.
Emma informed me of two possible avenues for treatment. There was the standard chemotherapy, attacking the cancer from the outside in. But there were other therapies, new discoveries that attacked the cancer from the inside out. I hadn’t realized how many advancements had been made in the treatment of certain types of cancer, and there was evidence that some of these newer therapies led to unthinkable survival rates for some.
This was the kind of discussion I’d had with so many patients. Explaining the approaches, outcomes, and option considerations. Emma was the kind of doctor I wanted---a doctor like me. For Emma, the considerations surrounded my ability to go back to work. This consideration was less of a priority for me, and I told her so. I could forge a different path if I had to. I wanted the treatment that would work the best, even if it meant losing my ability to operate.
My identity as a neurosurgeon had faded with my diagnosis, but here she was, telling me I could possibly be me again. I started to believe perhaps I could be, and that belief was pacifying.
With this possible regathering of my identity came a remembering of my ideals. I’d accepted that death was a part of life. I’d known it was something we all would experience. That truth was no more true simply because I had cancer. I was always going to die, but that hadn’t stopped me from living. Just because the fact of death appeared before I thought it would didn’t mean I should stop now, either.
Certain types of lung cancer have a mutation called EGFR, which becomes the target for treatment. This form of lung cancer adds approximately a year to the life-expectancy or the possibility of recovery and survival. A lack of this mutation dramatically reduces the chance of survival to less than two years.
Where once I had used statistics to inform the guidance I provided my patients, I no longer had the same grasp on their meaning. Knowing the numbers didn’t clarify anything about my experience. They weren’t objective tools anymore. They were subjective barriers.
Lucy and I visited a sperm bank, knowing that any form of treatment could hinder my ability to reproduce. We desired children, had assumed we’d have them when life stabilized after our training was over. We didn’t know whether that future still existed, but we didn’t want to lose our chance at it completely. I would freeze my sperm to keep that door open.
The door seemed to open a little more when we found out my cancer included the EGFR mutation. Thus, treatment would involve a pill, Tarceva, rather than chemo. I started treatment, and as the days and weeks passed, I grew stronger. The curtain that had dropped between me and my future started to lift a little at a time. I felt for the first time what I could only assume was hope.
I was able to eat more and gained some of my weight back. My face broke out, which was representative of the body’s positive reaction to treatment. My ability to do the things I loved---being outdoorsy, active, playful, physically affectionate---were also changing. I was less attractive and less gregarious, but I was alive and feeling better.
I was a different person, a reality I had helped my patients and their families understand. I now understood, as they had come to, that I could only come close to resembling who I was again. But it was better than the alternative.
My meetings with Emma started to surround what my life’s narrative should be. I could follow the path that so many tended to follow---embrace the personal with everything I have left, such as family, friends, and experiences---or I could focus on becoming me again.
I’d always assumed I would work as a doctor and scientist for twenty or so years and transition to writer. Without knowing how much time I had left, I didn’t know which pursuit of the two was the priority or whether either were the right choice. If I had limited time, I would write. If I had a long-term prognosis, I’d continue on in medicine.
I told Emma all of this, but she still wouldn’t provide a number. She said she couldn’t, but I knew enough from my own experience that even when we won’t say how much time is left, we always had a sense of it inside. But there’d been times when I was wrong, when a patient I thought shouldn’t be kept alive recovered and lived a full life. I realized the determination of how I spent the rest of my time shouldn’t be motivated by subjective barriers.
I couldn’t fall back on a prognosis to tell me whether I should work or cherish what I had left. I couldn’t use it to decide whether or not to have a child. As a doctor, the statistics helped me formulate a clear picture for my patients, but for me, the picture was fuzzy. I would have to look death in the eye and determine what was important to me, what gave my life meaning, and find a way to try to live that life in whatever way I could.
All those times I’d referred patients to physical therapy, I never understood what I was sending them to. Just as you can imagine what losing a parent or child feels like but never understand it until it happens to you, doctors have no real gauge of what the sick go through until we are one of them. Physical therapy was hard, exhausting, and defeating.
I was physically diminished, and at first, just lifting my legs was a struggle. My physical therapist asked what I wanted to accomplish with therapy, and I said the ability to bike and run again, two things I’d regularly and readily enjoyed. Losing those abilities compounded my loss of identity. But each day that I made a tiny step in the direction of progress, I was seeing a possible path back to some semblance of the old me.
After a couple of months, I could sit for thirty-minute intervals more easily. After more time, I was able to socialize with friends again. The first time I got back on my bike, I went six miles. They weren’t the most graceful miles I’d ever ridden and barely accounted for a quarter of the distance I used to cover. But just being on the bike again was a victory.
Still, I didn’t know who I was out in the world. I wasn’t a neurosurgeon. I wasn’t a fit and capable man at the beginning of life. I wasn’t the husband my wife deserved. I had once been someone who could lead and make things happen. Now, I was someone who followed, a recipient rather than agent.
The only time I had any sense of being me was when I was in Emma’s office.
Emma challenged me to concentrate on my values and priorities, rather than my chances. These thoughts included those of being a father, and Lucy and I revisited our thoughts on having a child. We both felt that if human relationality was the foundation of a meaningful life, a child could only enhance that. She was concerned about whether raising a child was the right choice for me for whatever time I had left. I was concerned about whether raising a child alone and simultaneously caring for a sick husband was the right choice for her life.
We reasoned that there was no way to know what the future held for me or us, but living in wait for death was not living at all. With our families’ approval, we decided to live despite death. We decided to live without a clear picture of the future, which was what everyone did. We were going to start a family.
There was irony in the process of creating life. With in vitro fertilization, multiple embryos would be created and implanted. Only those viable would survive. The rest would die. There was no escaping death, even when the goal was to introduce life.
I went in for new scans after six weeks of the Tarceva. My blurry lungs were clear save one tiny spot. My damaged spine appeared to be healing. My cancer was stable. I was grateful and relieved.
My biweekly appointments with Emma were reduced to every six weeks. Our discussions returned to my new possible future. The picture of my life was becoming visible again. My world was settling down and finding its place.
I attended a reunion of former Stanford neurosurgical residents. Everyone there was pushing forward down a successful path full of possibility. Their lives were so similar to the one I’d had. But what was my life going to be now, and how much time did I have to find out?
Emma still hadn’t provided a prognosis, but our talks indicated possibilities. Could I be a neurosurgeon, a scientist, and professor? Should I be those things, or should I stay at home and raise my child, write, soak in life?
Meeting my patients where they were emotionally as a doctor had meant shining a light on the fork in the road and walking with them, hand in hand, to examine the different paths. I’d wanted to know death and provide the intricacies for them to know it, too. Walking now, holding death’s hand, I should understand it better than ever. I should be able to see both paths clearly and know which one to walk down. But I didn’t. It seemed unimaginable that my own mortality should be so confusing and displacing, but that’s exactly how I felt.
Without my medical training to guide me, I returned to my first love for answers: literature. Wanting to be physically involved in the chasm between life and death had pulled me from my pursuit of language to explain it. But now, in wanting to understand what death meant in my life and how it defined who I was meant to be, I returned to language. I sought that same vocabulary I had sought as a younger man.
Literature became my lifeline. My actions had become framed within the confines of how they related to death. But language had a power to supercede that meaning. The relentless uncertainty about what I should be doing ceased one day when the words of Samuel Beckett overshadowed my fears. I started the day suffering, the pain so bad I couldn’t fathom any possibility for action beyond getting up. I thought, “I can’t go on.” Just as quickly, though, Beckett’s words finished the thought, “I’ll go on.” I faced the day, one step at a time, repeating, “I can’t go on. I’ll go on.”
Everything became clear in that moment. Although I was dying, I wasn’t dead yet. I was still living, and the only person I knew how to be among the living was me. And who I was was a surgeon. I would find a way to be that person again, whatever that looked like now, until death said for certain I couldn’t anymore.
Physical therapy was still about gaining strength, but now that strength was geared specifically toward the physical aptitude required for surgery. I worked on extended periods of standing and tactile functions required for intricate manipulation of surgical tools.
The remaining tumor continued to shrink. Emma finally allowed for a hint at a prognosis, stating that an expectation of ten years was not out of the realm of possibility. It wasn’t a certainty, but the possibility supported my intention to get back to work.
It wasn’t until the possibility of returning to life as a neurosurgeon became a reality that I realized how freeing it had been to not hold the encompassing responsibility of life and death in my hands. I couldn’t help but wish Emma had advised against returning to work. If she had, I would have had a justifiable excuse to escape that responsibility. But soon, the desire to be at the helm of the ship navigating life and death beckoned. I had assumed a moral responsibility as a neurosurgeon, and that role was greater than me.
I went back to work, ensuring I only did one procedure a day. I requested the constant presence of another resident, and the particulars of patient care would fall to them.
My first day back in the OR, I was scheduled for a temporal lobectomy, a familiar and favorite procedure. After eighteen weeks, I slipped on surgical scrubs for the first time and readied the patient and myself for surgery. It was second nature, the movements and knowledge coming to me easily.
Then, something happened. I became dizzy and felt like I might black out. I excused myself, knowing my fellow resident could finish, and went to rest. Lying down, I knew what had happened. There is a phenomenon called “neurocardiogenic syncope,” which means the nervous system reacts to a stimulus by slowing the heart rate dramatically. In layman’s terms, we call it “nerves.” My glorious return to surgery was not so glorious after all. I left the hospital and promised to return the next day, when I would do better.
And I did. In fact, each day after that got better. I was settling into my skills again and accepting that I would have to work at a slower pace. As time progressed, I grew more into my role until I was almost back to full capacity after a month.
I was back in action, but I didn’t feel the same. The joy I used to feel while operating had been replaced by fortitude. Managing the effects of my illness---exhaustion, nausea, and pain---was at the forefront of my mind. Still, I pushed on, wanting to reclaim the future I thought had become out of reach.
My cancer was stable, and Lucy was pregnant and due around the time of my graduation. Life was moving forward, and I was determined to keep it moving.
The position at Stanford that seemed created just for me was gone. Someone else had been hired while I’d been in treatment. I was heartbroken, but that feeling was secondary to the concern that followed when I heard news about questions regarding my upcoming graduation. The professors no longer knew whether I was capable of fulfilling the full load of my responsibilities as chief. I realized they were right. I hadn’t been working as a fully fledged physician. I’d been a technical consultant, using my skills only in the OR.
I had to prove to my advisors and myself that I could be a complete physician again. I extended my daily hours significantly and reclaimed responsibility for all aspects of patient care. I didn’t think I was going to make it. I was pushing myself to the limit and physically suffering. But being back with patients helped ease the strain. I found meaning again in my duties as a physician by reconnecting with my patients.
The thing about life-altering illness is that the goals or priorities of one day may be different the next. With time seemingly suspended in a finite place, what feels important may suddenly seem otherwise. Death will come, and when it does, it is a singular moment---an isolated moment. But until that day, forming the rest of your life is a journey.
I started to see my journey as traveling through the stages of grief opposite of the theorized direction. What I’d wanted correlated with the different stages. I accepted the reality of death when diagnosed and prepared for it. Then, when it seemed like there was hope, I grew depressed from the plethora of options for how I should face the days in front of me. At some point, something resembling bargaining took place, as I questioned the necessity of needing to go through this illness. Then, that questioning became anger that I had to go through it at all.
My goals and priorities had shifted during each of those moments, but now what I wanted was to ignore what was happening and go back to my life before my diagnosis. I was in denial about the uncertainty of my future, but perhaps that was okay. Perhaps, when you don’t know how much time you have, pretending you have all the time in the world is the appropriate course of action.
With my diagnosis nine months behind me, I attempted to recreate the trajectory of my pre-cancer life. I was weary and beaten down physically, but it was all worth it. In a just a couple of months, graduation would be upon me and life would settle into a manageable pace.
There was a job at a university in Wisconsin that encompassed everything I’d hoped for in a post-residency position. The pay was high. There was significant funding for a neuroscience lab. I would be in charge of my clinical service. There was time available, if needed, to address my illness. The position included a professorship with possible tenure. The town was quaint and beautiful. Lucy had a number of career opportunities to choose from. My dreams could be realized with this job.
I knew that without Emma, I could never have gotten back to this place. After my diagnosis, I couldn’t see a way back to who I was before, but she had kept my identity alive despite my misgivings. She had met me where I was and nurtured her moral obligation to lead me forward until I could see the path back to myself again.
Yet, despite the fantasy, I suddenly realized it wasn’t possible to ever be me again…not completely. I also knew there was no way I could take this job. Before, my identity was that of a man with an open playing field without borders. Now, there was a major border. Cancer was part of this new life, and it could return or wreak havoc at any time.
If we moved to Wisconsin, Lucy would be far away from her support system. She would be alone with a child and me to care for. My bravado of the past few months, in which I’d denied cancer any power in my life, smacked me in the face. The reality of life now made the fantasy of reclaiming that life vivid and foolish. No matter how many strides away from cancer I made, it was always trailing behind.
The self-conceit I’d entertained as a physician, believing all I had to do was guide patients and families through the murky waters of death until they could either beat it or face it, was now apparent. Even if the surgery is a success and the patient is released to life once again, that life is forever changed.
Emma hadn’t helped me face death and reclaim my life. She’d helped guide me to a place where a new identity could be sought. I finally understood that that task was the only one at hand.
The confluence of so many things were afoot seven months after I’d gone back to work. I went in for my last scan before graduation, before our baby was born, and before my new future self began. Unlike previous scans, when I reviewed them right away, I had to wait. Patients and duties of both the chief resident and physician needed my attention.
Two hours after my scan, I opened up the scans of my current patients, reviewing them and making plans for how to approach the following day. When I was finished, I pulled up my scans from earlier, going through them with the same casual attention I had with my patients’. I didn’t see it at first. But once I did, it was all I could see. Taking up the middle of my right lung was a new sizable tumor.
I took in this information without fear or frustration. It was a certainty as any other, like the rotation of the Earth.
Lucy and I understood what would come next. The tumor would be biopsied and then treatment. Chemo would likely be needed, and things would be harder than last time. We also understood that whatever time we’d thought I had left was now truncated.
We would find out for sure what my life would become on the following Monday, a few days away. My ability to work as a neurosurgeon would be on hold for a while or for good. Until then, I would continue on as planned, which meant operating in a surgery the next day I was already scheduled for.
I went in to work, scrubbed, possibly for the final time, and performed the procedure successfully. I packed up seven years of personal items, leaving my books for those that came after. I became emotional sitting in my car waiting to leave. But when I got home, I stashed away the items that made me a doctor---white coat, hospital badge, pager, scrubs---and turned to face another new future.
Emma confirmed what Lucy and I had expected as the next steps. When I told her I was stepping away from work, she didn’t argue this time. She said she understood, as long as I understood that her agreeing wasn’t based on anything different about my condition. I was in the same state of health I had been in days earlier. She wasn’t giving up on my return to the life I wanted, and I shouldn’t either.
I was back on the opposite side of the doctor-patient relationship, back up against a foe that was proving how strong it was despite my strength. Still, Emma’s words were reassuring, as was her advice to simply be a patient, not a doctor involved in my own care, a role I had never considered.
I started chemotherapy on a Monday, and the effects were immediate. I was depleted of energy and the desire to eat. I had to be fed by a tube, and after a few days, life revolved around these timed feedings and languoring in front of the television. I would start to feel better just in time for the next round of chemo.
My time back at work had successfully convinced the neurosurgery department that I had fulfilled the requirements for graduation. The day came for the ceremony, with Lucy still two weeks out from her due date. I was getting ready to accept the marker of seven years of training and persistence when a nausea like nothing I’d felt before came over me. I became violently ill and was taken to the ER, instead of the ceremony.
A medical resident was in charge of my care, trying to rehydrate me after the vomiting turned into diarrhea. I discussed my history with him, including medications, which still included Tarceva. We developed a plan to proceed. I was admitted to the hospital so I could continue IV fluids under observation.
That night, I learned that the resident had removed Tarceva from my list of medications. I had no idea how he felt capable enough to make that decision on his own and challenged it. I told him that Emma was a proponent of Tarceva, but he was adamant the drug was the likely culprit of my current state. I was livid, partly because I knew the likelihood of searing pain I could start to experience without the Tarceva.
In response to my protests, he questioned whether the situation was an actual crisis or could wait to be resolved in the morning. At that moment, I realized I was not going to get the Tarceva. He was more concerned about appearing incompetent to his bosses than fulfilling his responsibility to my care.
The next day, the symptoms I came in with worsened, and my kidneys started to malfunction. I became so dehydrated, my mouth was like sandpaper. My labs showed fatal levels of serum sodium. I was taken to the ICU, where I would stay for enough time for Lucy’s due date to pass.
In the ICU, I ventured in and out of consciousness. At times, I was lucid enough to understand that a myriad of doctors were working on my case, each with a myriad of ideas about what my care should be. When I was able, and with Lucy’s help, I tried to detail my condition to generate some order in my care and keep the doctors on track. When I wasn’t of sound mind, these details could be read back to me.
Emma finally took charge and assuaged the chaotic environment during my stay. I was still incoherent often, but I knew I was in good hands with Emma.
Forty pounds lighter since my diagnosis, I was slated for discharge from the hospital. I was back to my eighth-grade weight. I was lucid again but worn. My skin was a mere sheath over my bones, and simple acts, like keeping my head upright or drinking a glass of water, were taxing. And I was no longer able to read.
Treatment would have to wait until I was in better shape, and experimental trials were out of the question in my condition. The next time I saw Emma, she told me that I likely had another five years ahead of me, but the words rang hollow. She was no longer the poised, assertive guide. She was a hopeful companion in the dark tunnel searching for light.
On my way home from meeting with Emma, Lucy went into labor. My father brought me to the hospital, and on a cot, I lay in the delivery room covered in blankets and heating packs. We waited for two hours for Lucy’s final push. On the Fourth of July, our daughter, Elizabeth Acadia, was born. We called her Cady for short.
I held my swaddled baby and Lucy’s hand at the same time, both of us peering down into the face of life. The finality of my death was still a question, but instead of all the “what ifs,” holding Cady, I now saw a clean slate on which anything was possible.
Time has lost its meaning and luster for me. Each moment moves me farther away from the last relapse. But that same moment is another step toward another one or the final one. Death may still be far off, but I am certain it is not as far off as I would like. With this knowledge, it would be easy to try to cram as much “living” as I can into the time I have left. But cancer is a fickle companion. It doesn’t necessarily take away your time as fast as you think it will, but it makes your body too weak to enjoy it the way you’d like.
There is little to differentiate the days now. If time was arbitrary when I was operating, now it was meaningless. The time of day holds no weight, nor does the knowledge of whether it is Tuesday or Friday. I am static. I am simply existing.
I also don’t know how to think of myself, what tense to use. Was I or am I a doctor? Or perhaps I should think I was previously a neurosurgeon and might be one in the future? Graham Greene stated that you live for 20 years and reflect for the rest. Is this life, then, a reflection of the past already?
Most people either fulfill their hopes or leave them behind. Both states are past; thus, the future becomes the present. My present is all the future I have, but that is not the case for my daughter. I hope to be around for enough time that she will remember me. There are so many things I want to share with her, but writing them down feels presumptuous. I have no inkling of who she will be and what will be important to her.
In this place, where our lives intersect for a brief moment of time, I can only think of one appropriate message to leave her with: when life dictates you gather the evidence of your worth, as it will at various times, remember that by living, you helped me live. It is of no small consequence that you brought a peaceful calm to my dying days, one like I had never known. The joy you gave me is enough, and never doubt that it was everything.
The final pages of When Breath Becomes Air are written by Paul’s wife, Lucy. She describes how Paul died on March 9, 2015, in the hospital with his loved ones by his side. Cady was eight months old.
Paul’s treatment stopped working a few months earlier, at Christmas. He became weaker but kept living as best as he could. They had friends over for dinner, played with Cady, and continued to enjoy each other’s love and companionship. Paul also worked on this book. During his last months, finishing the book was of the utmost importance to him.
The transition to spring brought a resurgence of life in the natural world while Paul’s life continued to wane. In February, he was put on oxygen to help his breathing. More scans were done, showing the growing grip of the cancer in his lungs and the spreading of it to his brain. The new brain tumors brought a shortened life expectancy and would eventually lead to neurological deficits.
The ensuing deterioration of his mind was particularly crushing for Paul, fearing the loss of meaning and independence. Thwarting these devastating effects became the main goal of whatever treatment he would receive.
Lucy remained strong for Paul, but on the inside, her heart was breaking. She didn’t know how much time they had left together, but she never thought it would only be a matter of days.
For his final weekend, Paul’s family came to their house and spent time with him and Cady. Paul knew he wasn’t likely to finish his manuscript either due to time or his physical capacity. But he still put it aside that day, preferring to be present with his family.
The family was hoping Sunday would bring more of the same. More time to relax and enjoy each other’s company, maybe go to church. But Paul spiked a fever and slept for most of the day. By Sunday night, Paul’s health took a dramatic turn. He couldn’t breathe and was taken to the ER. He knew, as they all did, he was unlikely to leave the hospital again.
The doctors suggested intubating him, and Paul and Lucy discussed and struggled over the decision. Intubation would keep him alive, but at what cost? Could his current ailments improve to a point where he could come off ventilation? Or would he continue to deteriorate, his brain and organs shutting down?
The other option was comfort care, an action that was certain to lead to rapid death. Paul’s main question regarded his quality of life even if he was able to recover from the respiratory issues. With the cancer in his brain, was there a good reason to lengthen his time if he would not be lucid enough for it to have meaning? He signed a “Do Not Resuscitate” and decided to sleep on it.
In the morning, his attention turned again to comfort care and the possibility of dying at home. But Lucy knew his condition was delicate and that he might not make it home. It was decided that she would bring home to him. The only thing he wanted was Cady.
Paul lay with Cady in his arms while the doctors commiserated over what was left to do. But Paul knew what he wanted. He turned to Lucy and said, “I’m ready.”
Surrounded by his family, Paul became emotional as he communicated his love and gratitude. Before the supplemental oxygen was removed and morphine injected, Paul asked his family to ensure this book was published. He also told Lucy he loved her one final time.
After another hour, Paul drifted into unconsciousness. Eventually, he inhaled and breathed out the last breath he would ever take.
Although Paul’s manuscript was not complete when he died, Lucy sees the correlation with his unfinished life. The book, like Paul, did not get the time it deserved.
He’d started the manuscript over the last year, writing with fervor every chance he had. He wrote while he was still finishing his residency. He wrote at night in bed. He wrote while waiting for his doctor appointments. He wrote and communicated with his editor while receiving chemotherapy.
Like the final year of Paul’s life, this book carries a sense of urgency. There was a desire to communicate everything he’d learned as a doctor and patient about life, death, and meaning under a ticking clock counting down the minutes until he could say no more. He couldn’t help people as a doctor anymore, but he still wanted to guide them through that threshold he’d helped so many walk through.
As he’d done for most of his life, his writing examines mortality and what it means to live with meaning. He wanted to face his mortality with grace, and he wanted to help others do the same.
Both Lucy and Paul recognized that his cancer saved their marriage. It brought them closer together, each wanting to secure a positive future for the other. Paul’s family was also a source of strength, supporting them through his treatments and their decision to have a child. Their lives were filled with love, and despite the sorrow, Lucy knows they were lucky for what they had.
Paul’s ability to meet death and accept it allowed him to have courage and integrity throughout his illness. Rather than fighting against reality or praying for a Hail Mary, he mourned the life he knew was out of reach and did his best to recreate something else in its place. Even when the illness was breaking his body down, his spirit was never broken. He sought meaning in what was left of his life.
That Paul is the one Lucy misses---the man who never gave up and who never stopped living.
Lucy knows that if Paul had survived, he would have contributed greatly to his field and medicine as a whole. Whenever she sees the hospital where he worked, where their daughter was born, and where he died, she thinks of all the people he would have helped. But in writing this book, she knows he will still contribute, still help, in a way that is uniquely Paul.
Lucy says the years since Paul’s death have been hard. Some days, her grief is so severe, she is inconsolable. But she’s also found beauty in remembering their love. She’s had to contemplate life and death every moment, and in doing so, she’s found peace and appreciation for what they shared. She says she didn’t expect to feel the power of love intertwined with her grief, but she does. She continues to love Paul with the same depth as she had when he was alive.
Paul was buried in the Santa Cruz Mountains in Northern California. From this plot, the ocean and coastline are in view. Lucy goes there frequently, bringing along a bottle of wine and reveling in her memories, many of which are held within that same environment.
The earth above Paul continues to grow and morph as the laws of nature progress. Each season brings a regrowth and a reminder of the unending connection between life and death.
The integrity Paul showed throughout his illness, and especially in those final months, was not limited to his life with cancer. He lived his entire life this way. He faced death daily and sought the answers to how to live despite it. Lucy believes that Paul’s illness was devastating, but his life was not a devastation. He wondered whether it was possible to hold life and death in his hands and still live a meaningful and graceful life. Lucy knows the only answer possible is yes.
Take a moment to reflect on this story.
What is one thing you learned from Paul’s journey? How does this knowledge change how you approach your life?