Hazel McHaffie

humanity

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

Is it ever right to take a life?

With all the events marking 75 years since D-Day and the Battle of Normandy, and other war-related events, my mind has been travelling the well-worn path of … is it ever justifiable to take a life? And is there a kind of life that’s worse than death?

Then for the last two Thursdays those questions have swirled again, watching Susanna Reid interviewing inmates awaiting execution in maximum security prisons in the USA for her series: Death Row: Countdown to Execution. The state of Texas supports the death penalty, and the locals appear to take it in their stride, but Susanna found it unsettling just being in the town with the execution chamber, to know exactly when a human being was being walked to that gurney, strapped down, given that lethal shot of Pentobarbital. She wanted to know exactly what was happening, how everyone felt – the convicted man, the family, the witnesses, the townspeople. She’d met these men briefly in the last few days of their lives, and in spite of their criminal backgrounds, it clearly troubled her.

Many inmates are held on Death Row for decades (the average 12 years) and massive amounts of money are spent on appeals even up to the eleventh hour. Fewer than 2% are exonerated but the process has to be gone through, seeking additional years or days of life if nothing else. For those who are the victims of the crimes (and that often includes the family of the convicted man) the death brings a form of closure; but opponents believe that society should not sink to their level. After all, as they said, we don’t rape rapists, we don’t steal from burglars; why should we kill murderers? ‘We should be better than that.

And against all this my mind goes to my own area of particular interest, viz the issues around assisted death for people on a different kind of trajectory: those with incurable, degenerative illnesses; trapped for years in many cases, with no hope of a reprieve. Their own kind of death row; their own kind of hell. And our society – too humane to kill convicts – is also unwilling to countenance patients ending their own lives when the pain, the suffering, the indignity, are intolerable. Is this justice? Is this fair? Is it humane? As Scottish former Rugby Union player Doddie Weir (who has Motor Neuron Disease himself and has just buried his mother after a fairly short experience of cancer) said this week: Being a farming boy, when there is no hope with the animals you are able to put them out of their misery, but with humans it is not allowed. It does not seem fair sometimes.

So many truly difficult questions; so many nuances and valid perspectives. I studied this topic in depth before writing Right to Die, published in 2008. I’ve repeatedly returned to it since. Eleven years on we’re no further forward in terms of the law. Assisted suicide is still illegal; doctors who help a person to die still face a jail sentence of up to 14 years. However, public opinion has swung much more towards some provision to help people caught up in these intolerable situations, helped in no small measure by the brave souls who have shared their harrowing experiences openly. Then in March this year, the Royal College of Physicians declared neutrality on the subject. And this week the Royal College of General Practitioners has said it will consult its 53,000 members on whether the time has come to drop their opposition to assisted dying. The wheels grind oh so slowly, but they do seem to be turning.

What do you think?

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

Comments

Fractured

Cross inside churchThe first time I died, I didn’t see God.
No light at the end of the tunnel. No haloed angels. No dead grandparents.
To be fair, I probably wasn’t a solid shoo-in for heaven. But, honestly, I kind of assumed I’d make the cut.
I didn’t see any fire or brimstone either.
Not even an endless darkness. Nothing.
One moment I was clawing at the ice above, skin numb, limbs burning. Then everything – the ice, the pain, the brightness filtering through the surface of the lake – just vanished. And then I saw the light.
A man in white who was decidedly not God stuck a penlight into each eye, once, twice, and pulled a tube the size of a garden hose from my throat. He spoke like I’d always imagined God would sound, smooth and commanding. But I knew it wasn’t God because we were in a room the color of custard, and I hate custard. Also, I counted no less that five tubes running through me. I didn’t think there’d be that much plastic in heaven.

Delaney Maxwell is 17 when she falls through a frozen lake and is trapped under the ice for eleven minutes; brought out as dead. A friend resuscitates her and somehow miraculously she survives, but she is not the girl she once was. The medical evidence points to brain damage; the lived reality is that she has a heightened awareness for impending death – ‘a knowledge, a sense, a purpose‘. But is her brain predicting the deaths or causing them? Whichever it is, when she responds to this irresistible extra sense pulling at her, she feels a great urge to try to stop the decline/accident/death, to save the person’s life. ‘I’d want to live. I’d want to try.

Troy Varga’s attitude is different. He was 19 and driving when he was involved in a terrible road collision in which both parents and his sister died. He ended up in a coma for three days himself; he too recovered against the odds. Like Delaney, he now has a sixth sense for death and even works in an assisted living facility. But he is still haunted by the memory of his sister wanting to be put out of her misery, and his powerlessness to help her. Now he wants to assist people to die, especially those who ‘don’t have the guts to do it themselves. They want to, but they can’t.

As you can see, the subject matter is very much in my line of work. Which is why I bought this book, Fractured, by Megan Miranda. I must confess the writing style isn’t really my bag (not her fault) but I did find the thinking behind the story intriguing: If I had the power to influence life and death, which way would I go? And as you know I like a book that challenges me.Thinking about a solution

Delaney also questions what it is to be human. The frozen lake has taken so much – her friendship with her lifelong pal Decker, her humanity, nearly her life. Her parents have changed because of her. Sometimes she even wonders just how alive she really is. She asks the doctor: ‘What makes me human, then?’ His reply? ‘We are the only species aware of our own mortality. We are the only ones who want to know why we live and why we die.‘ Hmmm.

ALERT! MY LAST COMMENTS CONTAIN SPOILERS

True to her own desire to fight for life, Delaney initially tries to warn people of their impending death and help save them, but the results are problematic and she’s forced to accept that she can’t. What’s more, she comes to realise that death is ‘not the worst thing that could happen‘. Living on in an insentient body, living with a heavy burden of guilt, prolonging pain and indignity, these are a form of entrapment, a version of hell.

Her focus changes to facilitating the best experience during the time that is left.

If you had just one day left, what would you want to do with it, I wonder?

 

 

, , , , ,

Comments

Forgiveness writ large

I Shall Not HateEvery now and then a book comes along that challenges the reader at a very fundamental level. Izzeldin Abuelaish‘s book, I Shall Not Hate, was that kind of a read for me earlier this year. (Apologies in advance: this will be a longish post to do justice to a powerful story.)

Whatever your preconceptions or affiliations or prejudices, this is certainly not a book for the fainthearted, and the experiences this man recounts make one feel ashamed of ever having complained. You might perhaps remember Dr Abuelaish appearing live on TV reporting the massacre of his family in January 2009. This, and its subsequent reproduction on Youtube, precipitated him into the public eye. But let’s go back to the beginning.

The boy Izzeldin was born and raised in a refugee camp in the Gaza strip. Reading about his shockingly deprived childhood, it’s hard to believe this was less than five decades ago (he was born in 1955), taking place while we enjoyed the normal privileges and freedoms we take for granted in this country.

‘We were everything the word refugee stands for: disenfranchised, dismissed, marginalised, and suffering.’ 

He vividly describes the grinding poverty that drove him to work for a pittance from a tender age to keep his large family in food, wearing cast offs from humanitarian aid bundles, bone weary and constantly hungry. As the eldest male he was also culturally required to shoulder responsibility for his parents and all his siblings.

‘Like most Palestinian children, I didn’t really have a childhood. Until I was ten, my family, which eventually numbered eleven (two parents, six boys – I was the eldest of them – and three girls), lived in one room that measured about ten feet by ten feet.There was no electricity, no running water; there were no toilets in the house. It was dirty. There was no privacy. We ate our meals from a single plate we shared. We had to wait in line to use the communal toilets and wait for water that was delivered by the United Nations. We were only allowed to fill our pots during certain hours of the day. We waited for trolleys to come by with kerosene or wood for us to buy to cook with. We were usually barefoot, flea-bitten, and hungry. We all slept together on a huge mattress that was hoisted up against the wall by day and lowered at night – except for the baby. There was always a newborn, it seemed, who slept in the same basin my mother used to wash the dishes, scrub the kids with a loofah, and clean the house.’

He was accustomed to seeing at firsthand the brutality of war, over and over again; he watched his meagre home being demolished to make a road wide enough for Israeli tanks to drive along; he was himself the subject of humiliating acts of cruelty and discrimination. All around him was hate and revenge. And yet, from an early age, Izzeldin believed in the common humanity of all races, of the potential for good, and the ‘hope for a better tomorrow’. He was, and still is, convinced that the majority of Palestinians and Israelis want to live in peace, to lead decent civilised lives, in safety and harmony. ‘It’s largely the leaders in both camps who continue to fight the unfinished battles of yesterday’, and the minority fanatics who carry out atrocities, who fuel the divisions, perpetuate extremist visions, and polarise opinion outside of the Holy Land.

Furthermore, he sees his own profession as uniquely placed to foster peace. Against all odds, thanks to his own determination, and his indomitable mother, he succeeded in his chosen career of medicine, becoming a recognised expert in obstetrics and gynaecology, infertility treatment, and public health. Race is irrelevant when you’re sick or in need of medical care, he says. He became the first Palestinian doctor to work in an Israeli hospital.

He also believes that if women and girls were accorded equal opportunities for health and education, they ‘could very well lead us to a peaceful coexistence.’ He certainly has reason to be grateful to the women in his own life. Not just his strong mother, but also his wife, left at home with up to eight children during his frequent absences for weeks, months, even a year, while he acquired the qualifications to break the vicious cycles of his inheritance.

The picture he paints of his country is a bleak one. Deprivation continues even to this day and everyone, including professionals like Dr Abuelaish, must endure them in the Gaza Strip. Water and sanitation services are on the verge of collapse; materials to repair the crumbling systems sit on an embargo list; the healthcare system is broken; access to hospitals and expertise outside the Strip is limited and not infrequently prohibited; a public health catastrophe is highly likely. Unemployment is extremely high; 70% live below the poverty line; farming and fishing face impossible restrictions. Exit visas are often denied for no good reason, limiting access to better lives and opportunities. All contributing factors in the escalation of hostilities in this volatile region. ‘It’s so easy to incite the people with the misery they’re in.’

But this book is not principally about the Middle East tensions, it’s one man’s personal crusade against seemingly impossible odds. Because a successful career didn’t render Dr Abuelaish immune to personal suffering. His nephew was deliberately shot in the legs and seriously disabled. Then his wife, Nadia, was diagnosed and died from leukaemia, all within the space of two weeks, leaving their eight children motherless, and Izzeldin a widower at the age of only 53. And then the worst catastrophe of all happened.

The Abuelaish family were desperately trying to regroup after Nadia’s death at the end of 2008, when the Gaza War erupted: an ‘insane assault‘ lasting 23 days. From the Palestinian perspective, Izzeldin calls it a ‘crazy annihilation‘ of the innocents. For those three weeks the family lost their faith in humanity; ‘God and each other’ were all they had left as they clung together waiting for what was to come. Then, on 16 January 2009, just twelve weeks after Nadia’s death, an Israeli tank blasted shells into the girls’ bedroom, blowing three of Izzeldin’s daughters and a niece to pieces. A tragedy so enormous and harrowing that it’s hard to even comprehend it.

Yet this man, their grieving father, has devoted his life to treating people on both sides of the conflict equally, and actively fostering understanding and reconciliation. His steadfast faith (he’s a Muslim), compassion and strength of character are at once humbling and awe-inspiring, and his book is one of the most powerful testaments to humanity triumphing over tragedy I’ve ever read.

‘We all need to understand that there are evil people in every country, every religion, every culture. But there is also the silent camp of people in every country who believe, like I do, that we can bring two communities together by listening to each other’s points of view and concerns. It’s that simple. I know it is; I’ve been doing it for almost all of my adult life. Look at the Middle East, the bruised Holy Land, and its generations of hatred and bloodshed. The way to replace that is with dialogue and understanding.’

The terrible massacre of these innocent girls inspired renewed and widespread calls for revenge but, even in the depths of his devastation, Izzeldin knew that ‘hatred is an illness. It prevents healing and peace’. Besides, no amount of retribution would bring his beloved children back. Instead he writes: ‘This catastrophe … has strengthened my thinking, deepened my belief about how to bridge the divide. I understand down to my bones that violence is futile. It is a waste of time, lives and resources, and has been proven to beget more violence. It does not work. It just perpetuates a vicious circle… To find the light of truth, you have to talk to, listen to, and respect each other.’

And he extends the challenge to us all: ‘… wiling is not enough. We must act. It is well known that all it takes for evil to survive is for good people like you to do nothing.’ (my emphasis).

[You can see an interview with Dr Abuelaish here which challenges him on some of the points in his book.]

 

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

Comments

Enough to warm the cockles

Back to work this week and finding plenty to warm the cockles of the heart. A quick share of the most pertinent before I get back to the big edit.

This handwritten sign appeared in a list of 21 pictures ‘to restore your faith in humanity‘:

During business hours the books on this porch are 50 cents. When the store is closed, please feel free to borrow them or keep them and pay me later. ANYTIME: IF YOU DON’T HAVE MONEY TO BUY BOOKS AND NEED OR WANT TO READ HELP YOURSELF. Donations accepted. 

Brilliant, huh?

And then there was the news that for the first time ever women have won all five Costa Book Awards.

And the statistics that show that people are buying more books in total thanks to aggressive marketing and the rise of e-books. All very salient points for me in my current deliberations.

Then there’s the tantalising pile of books I acquired myself this Christmas. IMG_8620

Who needs resolutions to feel positive at the start of 2013?

So, after a good wholesome break and lots of socialising, I’ve  returned to the isolation of my study, and to the current novel, with renewed enthusiasm and commitment. And a fresh eye. Exactly what was needed. The red pen is in overdrive.

, , , , , ,

Comments