Hazel McHaffie

identity

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.

 

, , , , , , , , , , , , , , , , , , , , , , ,

Comments

Hazards aplenty

As they say, no experiences are wasted for a writer. Not even negative ones.

It’s that time again – the annual giant Christian Aid Sale held in the splendid premises of St Andrew’s and St George’s West Church in the centre of Edinburgh. Selling thousands upon thousands of books, art works, ephemera, music, their aspirations are as high as their steeple: it’s always mobbed, and I, as any writer would, rejoice each year that physical books are still so very much alive.

Each year I go at least twice – once to deliver copies of my own books (as requested) before it opens, once to buy – and every time I’m staggered at the number of helpers involved, cheerful kindly people who don’t bat an eyelid when someone asks for a specific title or six, or hands them a large note expecting lots of small change. Such calm under pressure is a joy to behold. This time my second trip was about an hour after the doors opened. First impressions were fantastic – bright sunshine, happy fresh assistants, orderly boxes of books, hundreds of avid readers milling everywhere. The gangways between the trellis tables are narrow so you don’t need to be squeamish about bodily contact, and you are expected to take responsibility for your own health and safety – unmarked steps, dips underfoot, minor obstacles aplenty. But the atmosphere is relaxed and convivial, and there’s plenty of give and take.

So black marks to the folk who parked empty wheelchairs and buggies right across pathways, who thought it expedient to gather right beside the tables to natter, who spread their possessions over the boxes while they browsed denying others access, or who left their long-suffering husbands on corners necessitating inconvenient detours down steps and onto the road. And a special penalty to the two who trundled enormous hard suitcases right through the masses with sublime disregard for ankles and shins – yep, I was one of the victims. But I escaped with no lasting damage and a modest collection of purchases, and I raise a salute to the wonderful people who give their time and energies so tirelessly to this excellent cause and come up smiling.

Rather stupidly I went with two specific authors in mind – Stephen King and Mary Elizabeth Braddon – and before you ask, no, I certainly didn’t ask any of the volunteers for them!  There was no evidence of either, but I was thinking about King as the bus trundled me home. He has a neat way of expressing what I’m thinking about. Take this thought:
I’ve always wondered who I am when I write because once I’m doing it, I’m not in the room with myself.
It takes me a while to find myself again after an intense period of writing, and it certainly did the following night when I was deep in a psychological discussion with my characters.  Only vaguely did I become aware of a rumpus outside … raised voices … smoke …  hello? DJ had managed to set the garden shed alight and the air was alive with the sound of helpful neighbours sounding warnings and thick acrid smoke! By the time I’d re-entered the real world, DJ had the garden hose on full-tilt, damping down the smouldering structure, someone had called the fire brigade, and a crisis had been narrowly averted. I was left with no role other than redundant spectator. As the reassuring operations commander said, surveying the canisters of gas, tins of paint and fuel, and sundry other inflammables, laid out on the path afterwards: it could have been a whole lot worse. So, again, not much significant damage mercifully, but a few revisions to the to-do list and some changed priorities.

I might be dealing with mounting horror in my fictional world but it’s still a safer place than the here-and-now it seems!

, , , , , , ,

Comments

Festivalmania

Remember that pile of tickets for the Festival in Edinburgh? This one:

Well, instead of beavering away at my own creative writing, this week I and my teenage granddaughters (both very into the performance arts) have duly braved the crazy crowds …

watched breathtaking acrobatic daring …

gloriously elegant dance …

clever new drama …

and so much more beside. The occasional performance was … hmm … not quite up to the mark or indeed its programmed description – I draw a kindly veil – but as for the rest, well, hats off to some fabulously talented people. I hope they all got starred reviews and go away well satisfied with their experience in our fair city. I, perhaps more than most, appreciate the courage involved in taking one’s own creative skills into the public arena, and standing or falling on your own merit.

(Apologies for using posters instead of actual performances but photographs are strictly forbidden in most shows for obvious reasons.)

, , ,

Comments

Countdown

What a week. The brutal murder of MP Jo Cox; Tim Peake‘s return to earth after six months in space; an historic referendum on the UK’s position in Europe; … I’ve counted down to my own author-event at Blackwell’s Bookshop this evening, not just in days-to-the-referendum, but in significant news flashes. And I want to pay my own small tribute to Jo Cox and her family who have epitomised dignity, humanity, unity and compassion. If only her legacy could continue to overrule the vitriol and power-struggling and falsehoods which have characterised this campaign.

So, tonight we launch my latest novel, Inside of Me, into the bigger world, courtesy of Blackwell’s Bookshop in Edinburgh.

Stash of Inside of Me

I always knew it would be hard to do justice to this one without giving away a surprise but significant element which is only revealed at the end. So I had to explore various angles which might ‘sell’ the book to a live audience without containing spoilers. On this occasion I decided to concentrate on two points: body image and disappearance.

I suspect that only a tiny minority of people go through life perfectly content with their own body image; I’m certainly not among their number. All manner of hang-ups, me. All my life. And sobering statistics for suicide, mental health, eating disorders, self-harm, obsessions and addictions, cosmetic procedures, gender changes, all bear testament to a wider societal dissatisfaction. Small wonder, fueled as we are by the messages, overt and subliminal, from magazines and the internet; from social media; peer pressures; completely unrealistic expectations and cultural ideals. My book fits into this context, exploring what it means to live with unhappiness and troubled thoughts and unachievable goals.

One example will suffice: 15-year-old India Grayson looks in the mirror and perceives a size 3 body as grossly overweight. She aspires to have the courage to binge eat and deliberately vomit. Her mother can only stand on the sidelines, powerless to prevent her beloved daughter, on the very cusp of adulthood, starving herself to the point of collapse, forced to wait for medical intervention until the teenager is at death’s door or at imminent risk of significant deterioration. But India’s not seeking death; she’s seeking control. So how far should she be allowed to go along the path to self-destruction? What right has her mother to intervene?

Disappearance is the second recurring theme I chose to speak about. Three teenage girls vanish one after another. So does India’s beloved dad, leaving a neatly folded pile of clothes on a windy beach. Are these events connected? India’s mother has her niggling suspicions, doubts and fears but she’s suppressed them and certainly hasn’t shared them with a single soul. But now, eight years after his supposed suicide, India is convinced she heard her father’s voice on a crowded London station. She has to find him. The truth when it emerges is not what anyone expected; it challenges their notions of family and relationships, of image and identity. It makes us wonder, to what extent is it right to pursue our own goals and ambitions, when they conflict with the interests of others?

A-Lot-Like-EveAs part of my thinking about body image, I’ve been reading A Lot like Eve by Joanna Jepson. A newly ordained curate, Jepson came to fame in the early 2000s when she challenged the courts over cases of abortion for nothing more disabling than a hare lip and cleft palate. I remember her well – and her arguments. She was uniquely qualified to adopt this cause having herself been the victim of bullying and humiliation because of a facial disfigurement, and having also witnessed reaction to her brother who has Down’s Syndrome. What I didn’t know is how she has struggled with her faith and calling. This book is a moving exploration of her own battle to find acceptance and peace in her personal as well as her religious life.  And who else would see their calling to be chaplain to the fashion industry?

, , , , , , , , , , , , , , , , , , , , , , , ,

Comments

Ethical issues for everyone

I’ve been taking stock of where I am in my writing career of late and I thought I’d share with you a couple of noteworthy things from this appraisal.

The first relates to the prevalence of my subject matter.

To one side of my desk I have three large boxes full of folders. Each file contains material related to topics I’m interested in; each one a potential novel. (Yep, you’ve got the picture. I’m obsessive. Nothing newsworthy there.) But some of these files are very thick; one topic even runs to two volumes. And reviewing the contents, I’m reminded of how often I cut things out of the daily papers to slip into the said folders. Deduction? My kind of subjects must help sell newspapers; ordinary people must be interested in them.

Alert to this, I did a mini survey. Result? Just on one day this week there was something on
– mental illness (OCD and depression and self harming all dealt with)
– organ transplantation (growing human organs inside other mammals)
– assisted suicide (the BMA’s position: should doctors to be free to follow their consciences?)
– body image and identity (eating disorders, celebrities’ experiences)
– balance of risks and benefits (related to heart disease)
– care of the elderly and those with dementia
All on just one day in one newspaper.

Right to DieThe second point relates to the currency of my subject matter.

When I start planning a new book, I do try to imagine life a bit ahead of present understanding so that when it comes out it’s still relevant and topical, but I’ve been surprised at how much these issues remain current. Take assisted dying, for instance. My novel, Right to Die, was published in 2008. In the eight years since then parliament has revisited the issue repeatedly; professional bodies have regularly debated the pros and cons; a considerable number of high profile cases have come to public attention; campaigns have been fought. It’s still a hot potato and it doesn’t show any sign of cooling any time soon.

Remember-RememberThen there’s dementia. Remember Remember came out in 2010, but the ethical dilemmas it explores are as thorny today as they were then. What’s more, the number of families grappling with them is growing as the human lifespan increases; more and more individuals are exercised by the questions.

I’ve been working on an outline for the tenth and eleventh books recently and I’m staggered by the thickness of the folders on those two topics. I’m having to write notes of notes, and lists of lists, to sort out the wealth of facts and the evolution of thinking and knowledge, in order to establish what arguments and counter-arguments obtain today, and to start developing a coherent plot-line. When I first set out on my pathway to becoming a novelist, a very highly regarded agent advised me to leave my academic background behind me. I knew what he meant: the meticulous research mustn’t show through in the finished product. However, from my point of view, those decades as an university researcher stand me in good stead when it comes to delving deep, sifting and sorting facts, and understanding science.

Of course, I’m well aware that at some point I shall have to put away my writing pen, my days as an author done. But it certainly won’t be because I’ve run out of subject matter! Medical ethics is very much alive and thriving.

, , , , , , , , ,

Comments

Inside of Me: a sneak preview

It occurred to me during the week that many of you are people who’ve read some or all of my novels to date. I should therefore do you the courtesy of giving you a priority glimpse into the latest offering, Inside of Me, currently being critiqued by my first raft of advisors.

Inside of Me manuscriptFor your exclusive scrutiny (!) then, an outline of the theme and the plot – never before seen!

The theme: Body image. Several of the characters in Inside of Me struggle to find their own ways of dealing with or escaping from problems related to their perceptions of themselves, sometimes with devastating consequences for their families and friends. Now, I might as well come clean and tell you that I personally have long-standing issues with this topic, so it’s been quite a troubling experience immersing myself in its various manifestations. What’s more, my recent illness (which incapacitated me for six months) added yet another dimension when I realised how much of my own perceived identity is wrapped up in what I do and what I achieve – for part of this time NOTHING!

The plot: Two teenage girls vanish. One is found dead, the other is still missing without trace. Then a Scottish nurse, Victor Grayson, 36, vanishes leaving behind a neat pile of his clothes on the beach, a wife and an 8 year old daughter. The police presume he took his own life; his wife, Tonya, secretly fears he may have been involved in the disappearance of the teenagers; his daughter, India, hangs on ferociously to her picture of her dad as her best friend through the haze of faulty memories and half truths.

Roll forward seven years, and India, now 15, thinks she hears his voice 500 miles away, on King’s Cross station. At the same time a third teenager vanishes. Events – both in the Grayson family and the police department – develop new momentum. India has anorexia and her mother believes she’s hallucinating from hunger. But India’s best friend takes up the case, and when the third missing teenager is seen at the cinema with an unknown person the race is on to find her before anything bad happens to her.

Exactly what is the connection between the missing schoolgirls, a Scottish nurse, a London florist, and two youngsters with eating disorders?

Concentration chez moi is on the next stages of the publishing process but this lovely weather is tempting me out and about as well. How fabulous Scotland is – hard to believe crimes can be committed amidst such beauty; and individuals be swallowed up by their own distorted perceptions.

Glendoick GardensPoppy

, , , , ,

Comments