Hazel McHaffie

metastatic cancer

Living in the face of death

Every now and then a book comes into your life that stops you in your tracks. When Breath Becomes Air is one such for me. The author, Paul Kalanathi, was a neurosurgeon and writer with degrees in English literature, human biology, and history and philosophy of science and medicine, garlanded with awards and distinctions. But it’s not so much his brilliance as a scholar or clinician that makes this a stand-out work, but his humanity, his wisdom, his reverence for life even in the face of death, his empathy with people.

His writing reminds me very much of Henry Marsh, also a neurosurgeon, who revealed with brutal honesty the price these gifted surgeons pay for the high-risk work they do, where a single tiny slip of the hand, or a wrong judgement call, can wreck a life. Kalanithi describes, clearly and poignantly, and entirely without self-pity, his own journey from medical student, through professional and powerful neurosurgeon, to helpless terminally ill patient. He died, aged just 37 years old. I wept with and for him. I am unsurprised that esteemed figures like Atul Gawande and Abraham Verghese have endorsed this book so comprehensively; all are giants among men when it comes to deep psychological truths about human beings.

As a schoolboy and undergraduate Paul Kalanathi read prolifically.  Literature, he came to see, ‘not only illuminated another’s experience, it provided the richest material for moral reflection’. Through reading and studying philosophy and neuroscience and ethics he pursued his goal relentlessly: ‘to seek a deeper understanding of a life of the mind.’  But he was all too conscious that his thinking didn’t sit comfortably in an English Department, and he simply couldn’t find the answers to where biology, morality, literature and philosophy intersected, or what makes life meaningful even in the face of suffering and death and decay. He craved direct real-life experience. And so it was that he embarked on a career in medicine, as so many men in his family had done before him.

His humanity and compassion pervade the accounts of various experiences along the way, bringing him eventually to specialise in neurosurgery. As he says: ‘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’. At critical junctures the question is not simply whether to live or die, but more than that, what makes life meaningful enough to go on living? I should have liked many more of his illuminating experiences, but their brevity served to spell out the pressure he was under, the limited time he had left in this world to record his thoughts.

Neurosurgery is a fiercely demanding discipline with its commitment ‘not only to one’s own excellence but to another’s identity’. As he says: ‘We [have] assumed an onerous yoke, that of mortal responsibility. Our patients’ 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 …’ The burden of this ‘unforgiving call to perfection’ was driven home ferociously when a friend and colleague jumped off of a high roof, killing himself, following the death of one of his patients.

But shining through all the high-powered knife-edge clinical precision is this particular doctor’s empathy and kindness. He learned that ‘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 his family whose lives have disintegrated and work until they can stand back up and face, and make sense of, their own existence’. He understood …
That  ‘a tureen of tragedy was best allotted by the spoonful‘.
That traumatised patients’ relatives wouldn’t retain devastating details in one fell swoop.
That it was irresponsible to be more precise in prognoses than you could be accurate.
That holding a patient’s hand becomes a mode of communication.
That there is more than mere biological life at stake; identity matters. ‘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.’

Then came the devastating diagnosis of his own metastatic Grade IV cancer, and everything changed. He had ‘traversed a line from doctor to patient, from actor to acted upon, from subject to direct object’.

When Kalanithi began suffering pain in his back – pain so severe he could only curl up on the floor screaming – he rationalised away the symptoms. After all, healthy men in their thirties simply didn’t get lethal cancers, did they? Finding he was already terminally ill with extensive metastases required immense adjustments, far more disorientating and dislocating than he ever imagined. And once again he turned to literature to try to make sense of the questions raging through his mind – Solzhenitsyn, Tolstoy, Woolf, Kafka, Hemingway, Frost, memoirs of cancer patients – ‘anything by anyone who had ever written about mortality … searching for a vocabulary with which to make sense of death, to find a way to begin defining myself and inching forward again’. It was literature that brought him back to life during this time.

‘Death may be a one-time event, but living with terminal illness is a process.’

‘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 … My life had been building potential, potential that would now go unrealized. I had planned to do so much, and I had come close. I was physically debilitated, my imagined future and my personal identity collapsed, and I faced the same existential quandaries my patients faced … Death, so familiar to me in my work, was 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 footprints 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.’ And the ground was to buckle and roil again and again as the disease progressed and the patient adjusted to his new reality.

Initially, as the tumours shrank, he set his sights on returning to the operating theatre – not the recumbent form on the receiving end of invasive treatment, but the upright one wielding a scalpel. Which he did. Even though exhausted beyond measure, only overcoming the nausea and pain by iron will, he persisted, and gradually his strength and stamina improved, alongside his fluency and technique. He began taking full responsibility for his patients, working longer hours, and despite his physical problems, started to enjoy the job once again, finding true meaning in this demanding work.

The birth of a daughter, Elizabeth Acadia, brought him a sense of joy and satisfaction hitherto unknown. But when she was only five months old, at Christmas time, the cancer began to resist all forms of treatment, and Paul made the decision to devote any energy he could summons to complete his book. Decline at this stage was unexpectedly rapid, and Cady was just eight months old when Paul died in a hospital bed 200 yards from where she was born.

Poignantly, his wife, Lucy, also a doctor, appended the Epilogue to When Breath Becomes Air – a searingly painful account of his last hours and a family’s grief. In 2013, she revealed, Paul had emailed his best friend to tell him about his terminal cancer: ‘The good news is that I’ve already outlived two Brontë sisters, Keats and Stephen Crane. The bad news is that I haven’t written anything.’ He had set his sights on rectifying this omission. When Breath Becomes Air became a new way for him to help others, a contribution only he could make; at once a moving personal story, a statement about death, and an inspiration to all who read it.

This is what courage sounds like.

Ironically, I read this book on the day when one of my granddaughters sat an exam for assessing her potential for entry to medical school. One day I might give her my copy of Paul Kalanithi’s book, but it’s too raw, too harrowing, too honest about the price doctors pay, to expose her to at this stage.

 

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