Illness narratives. Third stop. Biographical Literature. First Person Account

Because an interview is about asking a question and getting an answer, on the spot, engaging with the person in front of you, going forward together with that person and somehow building together the path of the questions to be asked and of the answers to be given, a navigation that in the end allows both people involved to clarify a series of aspects, I really can’t call this piece an interview, although this is how I feel as I put down the book I just read.

The book surprisingly answered many of the questions I had in my mind since I started doing my research on illness narratives. Reading it, felt like I had engaged in an intense dialogue with the author. Now I have even a bigger picture in my mind on the topic. The thing that saddens me now, as I finished the book, is knowing that I will never be able to go further with this conversation, as unfortunately, the author is no longer with us. But in the same time, I feel grateful for this rich encounter, which left me amazed both by the weight and by the lightness of words, of life, of death.

The author of the book, Paul Kalanithi was a neurosurgeon and writer (he had a BA and MA in English literature, a BA in Human biology, an MPhil in history and philosophy of science and medicine and graduated the Yale School of Medicine), who throughout his life was concerned about the relation we, as humans, have with death and mortality. As he was in his final year of residency, he found out he had lung cancer. He bravely underwent a series of treatments and documented his struggles with what terminal illness meant to him, as a doctor, as a patient, as a son, as a husband and as a father, in a book called When Breath Becomes Air. He died in March 2015. He was 37 years old.

The book is powerful, honest and as sharp as a scalpel and all that makes it beautiful, although the subject tackled is illness. The book is a gift, floating above the boundaries of life and death. The book is a time to be with yourself and remind yourself and reflect on your own mortality.

I wish time had been more patient with Paul Kalanithi and allowed me the chance to write to him and ask him my questions regarding my research in illness narratives. I know it would have been a meaningful dialogue. But time is not always generous. I am very grateful still, that I was able to learn about him through his book and wish to share with you some of his thoughts, showing you how he nevertheless answered many of my questions.

How and why did he end up being a doctor after studying literature and history of medicine?

»I had spent so much time studying literature at Stanford and the history of medicine at Cambridge, in an attempt to better understand the particularities of death, only to come away feeling like they were still unknowable to me […] such things could be known only face-to-face. I was pursuing medicine to bear witness to the twinned mysteries of death, its experiential and biological manifestations: at once deeply personal and utterly impersonal.«

What was, in his opinion, the specificity of neurosurgery as a medical specialty?

»While all doctors treat disease, neurosurgeons work in the crucible of identity: every operation on the brain is, by necessity, a manipulation of the substance of our selves. […] At those critical junctures, the question is not simply whether to live or die, but what kind of life is worth living.«

How was the moment when his role changed from that of a doctor to that of a

»I received the plastic arm bracelet all patients wear, put on the familiar light blue hospital gown, walked past the nurses I knew by name, and was checked in to a room – the same room where I had seen hundreds of patients over the years. In this room, I had sat with patients and explained terminal diagnoses and complex operations; in this room, I had congratulated patients on being cured of a disease and seen their happiness at being returned to their lives; in this room, I had pronounced patients dead. I had sat in the chairs, washed my hands in the sink, scrawled instructions on the marker board, changed the calendar. I had even, in moments of utter exhaustion, longed to lie down in this bed and sleep. Now I lay there, wide awake. A young nurse, one I hadn’t met, poked her head in. ›The doctor will be in soon.‹«

How did he feel when he found out he had lung cancer?

»One chapter of my life seemed to have ended; perhaps the whole book was closing. Instead of being the pastoral figure aiding a life transition, I found myself the sheep, lost and confused. Severe illness wasn’t life-altering, it was life-shattering. It felt less like an epiphany – a piercing burst of light, illuminating What Really Matters – and more like someone had just firebombed the path forward. Now I would have to work around it.«

»The lung cancer diagnosis was confirmed. My carefully planned and hard-won future no longer existed. Death, so familiar to me in my work, as now paying a personal visit. Here we were, finally face-to-face, and yet nothing about it seemed recognizable. Standing at the crossroads where I should have been able to see and follow the foot-prints of the countless patients I had treated over the years, I saw instead only a blank, a harsh, vacant, gleaming white desert, as if a sandstorm had erased all trace of familiarity.«

How is it for a doctor to turn into a patient?

»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.[…] 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.«

»As a doctor, you have a sense of what it’s like to be sick, but until you’ve gone through it yourself, you don’t really know. […] I had passed from the subject to the direct object of every sentence of my life.«

»Lost in a featureless wasteland of my own mortality, and finding no traction in the reams of scientific studies, intracellular molecular pathways, and endless curves of survival statistics, I began reading literature again […]«

What questions arised from his experience of being ill?

»Which is correct: ›I am a neurosurgeon,‹ ›I was a neurosurgeon,‹ or ›I had been a neurosurgeon before and will be again?‹ […] So what tense am I living in now? Have I proceeded beyond the present tense and into the past perfect? The future tense seems vacant and, on the others’ lips, jarring.«

How did he manage the time left?

»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 was having to learn how to budget.«

What belief guided his life?

»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 judgment 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.«