Hazel McHaffie

Motor Neurone Disease

Real life ethical challenges – alive and well

Wow! The year has begun with a bang as far as medical ethics is concerned. Lots to challenge us.

Just in one day this week we had the news that …

Every secondary school in England is to be offered training to help them identify and support children who are suffering from mental illness – a government-led initiative. Mrs May describes it as a first step in a plan to transform the way we deal with mental health in this country. There’s a long way to go but this is at least a concrete measure. Is it the right one, d’you think?

A terminally ill man with Motor Neurone Disease who fears becoming entombed in his own body has asked judges to allow doctors to prescribe a lethal dose of drugs for him without fear of prosecution. Sound familiar? Well, actually it’s the first case of its kind for 3 years would you believe – surprised me to learn that too. Should he be allowed this option? Is the UK ready for change? Where would it lead?

There’s been a rise in demand for live-in au pairs for elderly folk. It’s an attractive alternative for some to going into residential care. OK, I’m listening! And it comes amidst the controversies over standards in care homes and the soaring costs involved. But of course it comes at a price. And it inevitably excludes some people. Will it take off? Should it?

Viscount and Lady Weymouth have become the first members of the British aristocracy to have a baby carried and delivered by a surrogate mother. Apparently Emma Weymouth has a rare condition which puts her at high risk of having a stroke during labour; she suffered a brain haemorrhage and an endocrine disorder during her first pregnancy. This was deemed the safest way for them to ‘complete’ their family. But of course it has higher significance to an ancient lineage like the Longleat Bath family than to the average couple. Any thoughts?

After lengthy wrangling, judges have decided that a Gulf War veteran, policeman, and father of one, aged just 43, should be taken off life support and allowed to die, in line with his expressed wishes. His wife sees it as a final act of love. Others decry it as the thin end of the wedge to denying the sacredness of life. Where do you stand?

As I’ve said before, I shall never run out of material for my writing. And this ongoing interest in my subject spurs me on.

NEWSFLASH: Yesterday I completed the first draft of novel number 10. Wahey! Drum roll, please. It’s about a professor of Medical Ethics going on a train journey from Aberdeen to Penzance to deal with a crisis in her own family, but encountering all sorts of challenges along the way. The most fun of all my books to write so far, but I still cried at one point!

 

 

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Cursed inheritance

As I promised last week, good news this time!

Eight or nine years ago I chose Motor Neurone Disease for the degenerative condition journalist Adam O’Neill is battling with in my novel, Right to Die; Right to Diea disease that will strike right at the heart of his being and his aspirations. So I was fascinated to find Lisa Genova chose Huntington’s Disease for her tough Boston cop Joe O’Brien in Inside the O’Briens, a disease that stops his career dead in its tracks and forces him to face the horrors of genetic inheritance.

Both MND and HD are frightening, crippling, fatal conditions that rob the person of control and dignity. Getting inside the mind and body of either an Adam or a Joe is very scary stuff. So, having been there myself, I was extra curious to see how someone else tackled the ethical minefields and personal challenges associated with such a scenario; especially someone with Genova’s credentials.

This time she has inserted occasional tracts of medical explanation about the condition into her novel to inform the reader, positioning herself as a scientist; but for me her real strength lies in her ability to describe the illness from the inside. She puts the humanity into the science, compassion into the clinical facts. The insidious onset before policeman Joe even suspects the truth. The sudden weird and inexplicable bursts of anger. An inability to process instructions. Finding it impossible to keep legs and feet still on parade … in police exercises … in a restaurant. And then, once he’s diagnosed, the inexorable progression. The involuntary indiscriminate throws – punches, food, cutting words – that label him as drunk, deranged or dangerous to passers by. The red rages that cause his wife Rosie’s black eyes, terrible destruction in the walls of the family home. The fear that won’t let him ever hold his grandson. The depression that makes him constantly check his gun is still loaded and primed.

We peer into his past when Joe recalls his mother’s antsy wild black eyes as she lay in a mental institution for years; condemned to be known as an incurable drunk. The questions hitting him now nearly forty years later. How could she have remained an alcoholic in the hospital all those years? Why had his father stopped taking Joe and his sister to visit her? Why had his strong dad wept like a baby? What lessons did she actually teach him?

The author powerfully captures the brutal reality through the eyes of the rest of the family too:

Inside the O'Briens‘Huntington’s isn’t the absence of moving, thinking, and feeling. This disease is not a transcendental state of bliss. It’s a complete freak show – ugly, constant, unproductive movements, uncontrollable rage, unpredictable paranoia, obsessive thinking.’

We see the dawning terror in his wife’s eyes. Her silences. Her withdrawals. Her desperate stroking of the crucifix round her neck, the beads of her rosary. Her binning of the symbols of her ingrained Catholic faith.

Then there’s the terrible implications for their four beloved offspring. Vegan yoga teacher, Katie, living life in ‘peace, health and harmony’. Ballerina Meghan, limbs and body and mind all supple, beautiful, desirable. Firefighter JJ, taking his health and fitness for granted, using it to save others; preparing for imminent parenthood with his wife Colleen. Rebel Patrick, sewing his wild oats liberally, experimenting with life. Each one of them carrying a fifty percent chance of harbouring this cursed disease. Nothing can change that fact. Nothing can halt, slow or reverse this terrible thing. Joe, their father, is powerless to protect them. Indeed it was he, their supposed protector, who handed on the poisoned chalice in the first place. And now he must stand on the sidelines and watch them all battling with the impact of their cruel inheritance. Only they individually can decide whether to take the test, if they want to know the truth lurking unseen in their own DNA. JJ and Colleen may not even choose on behalf of their baby son.

How should Joe deal with his burdens? Is there a way out? Should he take it? How can he best support his children? Should the youngsters go for testing? What are the implications if they do/don’t? Would I want to know?

I love books that are at once a gripping read and challenge me to think deeply – especially in the field of medical ethics. And even though I’ve been into these questions already myself as an author, I thought this book was brilliant and awarded it five stars. Beautifully written, compassionate, perceptive, engrossing, provocative. Genova at the top of her game again. Seems I prefer her as neuroscientist-turned-novelist rather than simply novelist. That could well be something to do with my own position on the spectrum; nevertheless the experience of reading Love Anthony and Inside the O’Briens one after the other, has taught me something of value for my writing too.

So, Genova has already tackled Alzheimer’s, Left Neglect, autism and Huntington’s. What next? MND, she says – or as she calls it ALS. Ahah! I await that novel with bated breath!

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Dignifying death

QuestioningTomorrow the Assisted Dying Bill is back before the House of Commons yet again. I wonder if your views have changed since it was last debated.

It’s an age old question, isn’t it? 500 years before the birth of Christ, Euripides wrote: ‘I hate the men who would prolong their lives / By foods and drinks and charms of magic art / Perverting nature’s course to keep off death / They ought, when they no longer serve the land / To quit this life, and clear the way for youth.’

And here we are, 2600 years later, with an aging population, limited resources and vastly improved medical capability. Globally, the number of over-65s is expected to triple by 2050, with all that that implies. Of course, no politician will ever advocate that those who ‘no longer serve the land’ should choose suicide. But many aged and infirm people would choose death for themselves rather than indignity or slow decline or suffering. I’ve known many such – one just this week. And yet the current law prohibits assisting them towards that end. Is this a safeguard or a shackle?

During the Festival last month I went to a show which dealt with the quandary elderly folk can find themselves in: specifically not wanting to be kept alive, not wanting to be taken into hospital/care, not being listened to. In the drama, by the Jealous Whale Theatre, terminally ill Wendy’s grandson, Edmund, pleads with the authorities to respect her wishes; but the powers that be insist that there are ‘safeguarding’ issues and their hands are tied. In the end Edmund takes matters into his own hands, smothers his gran with a pillow, and then sits quietly waiting for the consequences. Cleverly performed in the intimacy of a ‘Wendy House’, it forced the audience into close proximity with the protagonists and their moral dilemmas. The play resurrected a lot of the old questions for me.

I'll See Myself Out, Thank YouEarlier this year I also read (and reviewed on this blog) ‘I’ll See Myself Out, Thank You Afterwards I went to the internet and looked at videos about people who have made a choice one way or the other. I was staggered by the number available, and had a rather depressing day watching them all, especially the touching scenes of farewell with loved ones. I don’t recommend it!

But I thought I’d give you the links to a selection of them just in case you want to select any to help you think through the arguments for yourself. I apologise for the imbalance; I’d have liked to be even handed, but far more pro assisted death than against seem to commit their views to video.

The last days, hours, minutes of a person’s life before they took the lethal dose, explaining their position and support for assisted suicide.

Cocktail of drugsCraig Ewart

Brittany Maynard

Man with AIDS in Oregon

Michelle Causse

Peter Smedley with Terry Pratchett attending

John Elliott

Susan Griffiths

Dr Donald Lowe

Gloria Taylor

People who wished they’d had this opportunity but hadn’t

Debbie Purdy

Convicted killer in Russia

Relatives grateful that their loved ones did have this chance of escape

Brother of an American

Mothers who wished to or did take the lives of their children.

Mother wanting to end life of two disabled adult children

Mother who did kill daughter

Patients lingering for years and years in an appalling state while everyone felt powerless to release them

Indian nurse sodomised and almost strangled

Several illustrative cases put together

Elderly viewpoints

The lengths friends and family would go to to support the settled wish of a patient

Two friends dying only one of whom was ill

Disabled people opposed to assisted suicide

Man with ALS

Disabled man

Disabled Alison Davis

(PS. Many years ago I was on a special committee with Alison Davies debating whether or not extremely small sick babies should be treated or allowed to die with dignity. We all found it very difficult to argue against Alison because it felt like devaluing her life. She’s still an ardent campaigner and a powerful voice decades later. And I’m still writing about the subject!)

Speaking of age, I want to add my own wee tribute to Her Majesty Queen Elizabeth II who yesterday became our longest ever reigning monarch. Watching this little old lady still performing her role with dignity, grace and an exemplary sense of duty at the age of 89 is both humbling and inspirational. God bless her.

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I’ll see myself out

In 1936 the royal physician, Lord Dawson of Penn injected a lethal mixture of morphine and cocaine directly into the jugular vein of His Majesty King George V. Queen Mary and the about-to-be King Edward VIII were in attendance. The timing of the fatal infusion was chosen so that the announcement of the King’s demise would make the next morning’s Times but be just too late for the less prestigious evening press.

Four monarchs on, the debate as to the rights and wrongs of assisted dying is a hot topic, and legally what Lord Dawson did would be inadmissible today.

I’ve lost track of the number of books and articles I’ve read on the subject, how many debates and seminars I’ve listened to, how many times I’ve rehearsed the arguments myself. But I can say that a new book out this year, beguilingly titled, I’ll See Myself Out, Thank You, is a very useful addition to the existing collection – hence I return to the subject yet again in this blog!

I'll See Myself Out, Thank You

It brings together short but relevant contributions from a range of writers: seriously disabled and terminally ill people who plan to take their own lives when the time is right for them, spouses of people who have already done so, psychiatrists who’re asked to assess their mental competence, people who work for Dignitas in Switzerland, those who have accompanied patients to Dignitas, relatives of people who’ve actually helped someone to die illegally in this country, peers of the realm who’ve voted on the issue, men of the cloth, humanists, ethicists, philosophers, journalists, novelists, playwrights, even a stand-up comic – an impressive list. All with voices worth listening to.

It’s a very readable book. The vivid stories, the personal experiences, the credentials of the authors, bring the issues to life and breathe authenticity into their measured and thoughtful viewpoints. Most of the arguments I’ve heard many times before, many of the contributors I know personally. However, I personally found three sections particularly thought-provoking.

In Chapter 4, psychiatrist, Dr Colin Brewer, gives some fascinating vignettes of people whom he was asked to assess for assisted suicide.  Made me ask: what would I have made of each of these cases?

The first section in Chapter 6 on Religion and Philosophy by Emeritus Professor of Theology, Rev. Dr Paul Badham (whom I’ve never met), gives a wholesome and refreshing look at ‘The Christian Case‘. All too often we hear a polarised and unbalanced religious perspective from a minority group or an unrepresentative figurehead; it’s good to have a more tolerant and compassionate approach which fits with a God I’d want to trust and believe in.

Right to DieAnd then there’s the section in Chapter 9 by a documentary maker, telling the story of art lecturer Glenn Scott‘s* suicide when he was in the last stages of Motor Neurone Disease. It’s a most moving account, reminiscent of my own story of Adam O’Neil’s dying in Right to Die. (*The link with Glenn’s name takes you to the video of his last tape.) I actually spent a whole rather miserable day looking at similar videos on YouTube and was amazed at the number out there.

Now, eight decades on since the death of King George V, when society is becoming overloaded with ailing elderly folk, when more and more people are wanting to ‘add life to their years – not years to their life‘, when parliament is still failing to resolve the legal paradoxes and quagmires, when doctors are hamstrung by ‘pervasive, post-Shipman paranoia’, when patients and relatives face increasingly intolerable situations, it behoves us all to think carefully, rationally, about where we personally stand on this issue, and what kind of a society we want for our children and grandchildren. In my opinion, this book helps one to do exactly that. (As do those videos.)

It didn’t change my mind; it did strengthen my resolve.

 

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Reflections from the sofa

It’s all very well to theorise about how we would act in certain circumstances from a safe distance, but real life in all its chaos can feel very different from the calm scenarios of our speculations. And in that context I’ve experienced some very sobering realisations this past few weeks in relation to medical ethics. Don’t get me wrong, I’m not feeling maudlin or morbid; rather I have an unusual amount of quiet time on my hands to reflect at the moment. So I thought I’d share some of my reflections with you to illustrate my initial statement.

There’s a lot to be said for simply accepting whatever life throws at you and dealing with it as it happens. It also saves a lot of angst if you just go along with whatever doctors say, take whatever treatment they advise, leave all the thinking to other people. But I’ve spent decades pondering ethical questions and challenging received wisdom, and my brain is now hard-wired to do so. So, let me illustrate where I’ve been going with this.

QuestioningMy own mortality has been brought into sharp relief since my heart started doing crazy things and I’ve been in and out of hospitals and GP surgeries. Lying on the floor waiting for the next heartbeat, watching a monitor recording 200 beats a minute, feeling the world receding, concentrates the mind wonderfully.

I’ve been working in the field of medical ethics for decades so not surprisingly I’ve given due attention to my end-of-life wishes. My ideal? To die with dignity, free from suffering, in full possession of my mental faculties. Nothing unique there, then. If things go pear-shaped, I’d rather not prolong a life of disability, lack of cognitive function, or suffering. Fair enough. Given that I’m entirely reliant on medicine to stay alive, I even have the wherewithal at my disposal to effect my own death should I wish to, without breaking any laws or implicating anyone else, or indeed doing anything other than refusing treatment.

I’ve duly prepared myself and others: I’ve thought (ad nauseam) about my own tolerances and limits. I’ve written an advanced directive – and even acquired a medical signature for it. I’ve had the conversation (many) with my nearest and dearest. All textbook stuff so far.

But real life is full of fine lines and unknowns which make actually carrying out those clear wishes problematic. I won’t bore you with a comprehensive treatise on how far short of the textbook reality falls in my own case; merely give a couple of examples by way of illustration.

I have options. I could simply ignore all my current symptoms of dizziness, nausea, blackouts, arrhythmia, get into the car and drive. I could keep doing strenuous things until my heart just gives up. Either, in my judgement, would be totally irresponsible. And my family and friends and doctors and lawyers would certainly have plenty to say – legitimately – about such a reaction. No, I have little choice at this moment but to listen to my body and accept that all is not well, and I believe I have a moral duty to take certain actions in recognition of that.

My heart is not maintaining a steady rhythm. One of the consequences of this is that I’m currently at greatly increased risk of a stroke. But nobody knows how bad such a stroke might/will be. If I suddenly had one, would I want to be resuscitated or treated? Well, it would depend on how severe the consequences of the stroke would be, and nobody could predict that at the time of the stroke. By the time anyone does know, the decision to treat has already been made … hmmmm. And it could be that by then I’m no longer mentally competent to make a decision for myself … ahhhh. How quickly and easily events spiral out of control.

At the moment we don’t know what’s causing the problems; I’m scheduled for more tests. Once we have a better idea of the underlying diagnosis, other questions will surface. They’re contingent on the facts: cause, statistics, outcomes, possible treatments, side-effects, risks-benefits ratios, etc etc. My medical team can supply the information, but I’m the one who must assess what I want. No one can force me to have treatment against my wishes. But my tolerances, my wishes, might not square with those of my medical advisers who have their own professional and personal standards and ethics, although it has to be noted, the consequences of what they do to me will not be borne by them. My assessments might not match those of my family who could be left to cope with my disability or death or worse. For their sakes I might feel an obligation to choose something different from what I might wish for myself alone.

See what I mean? We might think we have it all buttoned up, but life is unpredictable and no man is an island.

Right to DieI’ve seen up close and personal the effect of heart problems like mine – both instant death from a heart attack (my father), and the slow decline of repeated strokes, vascular dementia, prolonged total dependency (my mother) – so I’m not naive. I know what I would choose for myself; my family do too, but it’s not at all clear to me at the moment that I shall actually be able to put my wishes into effect. I rehearsed these dilemmas with Adam O’Neill when I walked alongside him as he died from Motor Neurone Disease six or seven years ago. I’m rehearsing them again now in real life for myself. It’s an interesting occupation.

 

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Gaining perspective

A sobering wake up call this week. My recent stresses have been reduced to something south of miniscule. A book and a film have put them into a healthier context.

The film featured in the Edinburgh International Film FestivalI am Breathing. Neil Platt was 33 when he was diagnosed with an inherited form of Motor Neurone Disease. Before he died aged 34 he wanted to do something to campaign for greater recognition of the disease and for more research funding. So he wrote a blog (using a frustratingly capricious voice-recognition machine) and allowed cameras to film his last months.

I am Breathing had its first showing around the world in just under 200 venues last Friday, Global Awareness Day for MND/ALS. You could have heard a pin drop in the cinema where I was. It’s extremely powerful, harrowing even, and yet it had its lighter moments thanks to Neil himself and his sense of the ridiculous. And at the end, his widow, Louise, appeared in person for a question and answer session. I had a dozen questions I’d like to have asked; I didn’t have the courage to ask even one. Somehow Neil’s halting testament through a machine, as the ventilator pumped each breath into him, had to stand alone.

The book was one I actually read about two years ago, but for some reason that now escapes me didn’t blog about at the time: Memoirs of a Geisha.

Imagine you’re a nine year old girl, a rural innocent, living in a tipsy house, in a primitive village in Japan in the 1920s. You can’t read or write, and washing involves a swim in a murky pond down the road.

One day a suave and sophisticated man comes into your village and you’re told he wants to take you and your sister into the next village. Your father has consented to this trip. But ‘the next village’ turns out to be far far away and you come to realise you have been sold into a form of slavery. You must obey every instruction blindly. You must succumb to horrendous degradation and abuse. If you accept all this for years you willmay gradually emerge to a life of beautiful clothes, rich gifts and the attentions of many powerful men. But the rewards are superficial. In return you must submit to sex on demand, being constantly paraded as a trophy, a life without choice or love.Japanese geishaIt sounds as if Memoirs will be a harrowing read, a real misery memoir, but not a bit of it. The inner strength and acceptance of this young woman, Sayuri, shines through, seeming to echo the calm untrammelled face she has to apply. Her resilience made me feel ashamed of ever complaining about my own lot in life.

When she hesitantly shares with her mentor her dream of better things, she’s told: ‘We don’t become geisha so our lives will be satisfying. We become geisha because we have no other choice.

She confides that she harbours a hope of one day finding someone she can love, who loves her in return, and a more experienced geisha says: ‘Young girls hope all sorts of foolish thing, Sayuri. Hopes are like hair ornaments. Girls want to wear too many of them. When they become old women they look silly wearing even one.’ Profound sentiments worth pondering.

These girls acquire a wisdom borne of survival. They believe their ‘destiny’ is mapped out in the stars; they accept it as beyond their power to change. And alongside that certainty comes a calm resignation that sustains them through the most hideous experiences.

They have their own standards:
Remember, Chiyo, geisha are not courtesans. And we are not wives. We sell our skills, not our bodies. We create another secret world, a place only of beauty. The very word “geisha” means artist and to be a geisha is to be judged as a moving work of art.’
She paints her face to hide her face. Her eyes are deep water. It is not for geisha to want. It is not for geisha to feel. Geisha is an artist of the floating world. She dances, she sings. She entertains you, whatever you want. The rest is shadows, the rest is secret.

I was late coming to this book, I know. And no, I haven’t seen the film either. But I do know that Memoirs of a Geisha has enjoyed huge success and been translated into thirty-two languages. It took Arthur Golden, ten years to write and he changed the narrative voice three times before finally settling on the first person viewpoint of Sayuri. I found her voice perfect for purpose. But as well as being taken to court by the geisha girl who informed the story, the author has been criticised for the ‘Cinderella ending’, and I confess I have a sneaking sympathy with that comment: I didn’t like it either. But then I only need to compare what eventually happens to Sayuri to the dreams and aspirations of a young woman in Britain in the twenty first century, to recognise that her ‘happy ending’ is a shadow of what might have been.

At once sobering, entertaining and haunting.

As I said, my stresses really aren’t worth worrying about.

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To write or not to write? that is the question

As I indicated last week, it’s an ongoing preoccupation with me – will readers want to immerse themselves in dark, melancholic tales? The issues I tackle all have this side to them, and each time I have to work hard at achieving a healthy balance; each time I worry: have I got it right?

Take Right to Die. Right to DieFor those of you who haven’t read it, it tells the story of a young man, Adam, who develops Motor Neurone Disease when he’s only 38. He knows he will die within a couple of years or so. Yep, plenty of scope for low spirits there, and I confess I still can’t read it without weeping myself. But then, I know Adam intimately. I lived with him for several years, and his spirit lingers with me. It’s personal.

the bookclub ladiesSo it was tremendously warming last Thursday to be invited to put in a guest appearance at a book club, and hear that, though they feared the worst, the members didn’t find the book at all depressing. They were so generous about it, and we had a wonderfully uplifting evening analysing why not, and teasing out the components of a book that ensure a good read. Yes, we did discuss the pros and cons of assisted dying along the way, but also what made Adam warm to the colourful Jamaican physio Lydia, but not the texbook perfect Veronique. Do exemplary GPs like Hugo Curtis really exist? Why did the cat have to die? What was really going on in that closed room between the GP and his patient? Do we smell romance between two of the principle characters? Very confirming. And such fun. I salute you, ladies! (Apologies for the poor quality photo – it doesn’t do you justice.)

This got me thinking about other books of a similar complexion. You know the kind of thing: Lionel Shriver’s We Need to Talk about Kevin;  Jodi Picoult’s Nineteen Minutes; Alice Sebold’s The Lovely Bones et al. And no, those novels didn’t depress me either. Why not? Because the macabre subjects (teenage massacres, rape and murder) were handled so skilfully, the stories so well told. I was challenged but not crushed.

Which brings me to Jeffrey Eugenides. MiddlesexI read and loved his wonderful book on hermaphroditism, Middlesex, ages ago. So when I saw his earlier novel, The Virgin Suicides, I snapped it up. This week it rose to the top of my pile and I devoured it in two sittings.

It’s not in the same league as Middlesex, but still worth reading. Basically it tells the story of the five adolescent Lisbon sisters who all commit suicide. Dark material? Positively ink black. The girls grow up in an eccentric and isolated environment. They’ve become an object of fascination to the local boys who watch them from various vantage points, and even on one memorable occasion, entice four of them out a joint date – the only one they were ever allowed. The narrator is one of these lads who, now grown up, looks back at the unfolding saga as if he’s compiling evidence for what happened, and searching for a plausible explanation.

Hmm. Teenage suicide, self harming – definitely not cheery bedtime reading, I think we’d all agree, so why is it so entertaining? Well, the tone, the style of writing, the irony, the humour of each situation, bring a light touch that seems to take the sting out of the essential tragedy, diverting attention and setting a broader canvas against which the lives of these doomed girls are played. Hard to describe so I’ll try to illustrate what I mean.

We aren’t worrying all the time about terrible happenings jumping out at us just as we start to get attached to the characters. Come to think of it, I didn’t form an attachment to any of them. We know from the outset that they will all die as you can see from the opening sentence.

On the morning the last Lisbon daughter took her turn at suicide – it was Mary this time, and sleeping pills, like Therese – the two paramedics arrived at the house knowing exactly where the knife drawer was, and the gas oven, and the beam in the basement from which it was possible to tie a rope.

And we also know early on that we are in sure hands. From Eugenides’ account of the girls’ intentions:

And it was then Cecilia gave orally what was to be her only form of suicide note … ‘Obviously, Doctor,’ she said, ‘you’ve never been a thirteen-year-old girl.’

… and even of the deed itself:

Through a side window we could see Mr Lisbon standing in the shrubbery. When we came out the front door we saw that he was holding Cecilia, one hand under her neck and the other under her knees. He was trying to lift her off the spike that had punctured her left breast, traveled through her inexplicable heart, separated two vertebrae without shattering either, and come out her back, ripping the dress and finding air again. The spike had gone through so fast there was no blood on it. It was perfectly clean and Cecilia merely seemed balanced on the pole like a gymnast. The fluttering wedding dress added to this circusy effect. Mr Lisbon kept trying to lift her off, gently, but even in our ignorance we knew it was hopeless and that despite Cecilia’s open eyes and the way her mouth kept contracting like that of a fish on a stringer it was just nerves and she had succeeded, on the second try, in hurling herself out of the world.

… and the funeral:

Only the family filed past the coffin. First the girls walked past, each dazed and expressionless, and, later, people said we should have known by their faces. ‘It was like they were giving her a wink,’ Mrs Carruthers said. ‘They should have been bawling, but what did they do? Up to the coffin, peek in, and away. Why didn’t we see it?’ Curt Van Osdol, the only kid at the Funeral Home, said he would have copped a last feel, right there in front of the priest and everybody, if only we had been there to appreciate it. After the girls passed by, Mrs Lisbon, on her husband’s arm, took ten stricken steps to dangle her weak head over Cecilia’s face, rouged for the first and last time ever. ‘Look at her nails,’ Mr Burton thought he heard her say. ‘Couldn’t they do something about her nails?’ And then Mr Lisbon replied: ‘They’ll grow on. Fingernails keep growing. She can’t bite them now, dear.’

This concentration on seemingly unconnected and disproportionately trivial points fits with the narrator’s original naive understanding of what was really happening. The tragedy of five teenage suicides in one family, of the subsequent disintegration, is subsumed under a welter of information about swarms of fish flies, and cats yowling, and unearthly smells, and protests about tree felling, and boys trying to glimpse girls in various states of undress – the preoccupations of adolescent youths. In this case a very clever tactic for counter balancing the horror of the Lisbon tragedies. The more adult understanding that comes from later interviews with neighbours, teachers, parents; the piecing together of exhibits which make sense of the seemingly incomprehensible, is titrated in as necessary in order to create a cohesive picture of what was really going on.

Reading this, analysing it, was like a mini master class for me. Would that I had this kind of skill. It also made me see that dark topics need not be off limits.

 

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Authentic fiction

I do love hearing from readers, and I’m always impressed when they make contact. It’s something I rarely do, but should do more often – no, not with myself, with authors whose work I’ve enjoyed.

‘Star letter’ this week goes to ‘Trish’ who wrote asking for the reference for a medical thriller mentioned in my novel Right to Die. The main protagonist, Adam O’Neill, a journalist who has developed Motor Neurone Disease, lends the thriller to his GP, Dr Curtis, and writes in his diary:

Right to DieHe’d brought back a book I’d lent him, a brilliant medical thriller about a serial murderer who developed aplastic anaemia. I’d been impressed by the twist in the tale, and thought Curtis might appreciate its medical cleverness. The killer went on to have a bone marrow transplant from his sister. Result: when he was a suspect years later the forensic people said he couldn’t be the killer because his DNA didn’t match the samples from the crime scene. Naturally, the hotshot detective got hold of some distant relative and winkled out the story of the transplant and hey ho, the villain’s clapped up in jail and they’ve thrown away the key.

The crime story was entirely fictitious, but of course I was chuffed to find someone wanted to read it. And more delighted still that my correspondent wrote to me subsequently to say she was a nurse who works with people with MND, and how true Right to Die rang with her experience. That kind of endorsement from experts is special. Very confirming.

In a couple of weeks time I’m due to attend a bookclub where the members are going to be discussing Right to Die, so I’m hoping they’ll be as enthusiastic as Trish. I know there’s at least one doctor in the group, so I’m not expecting an easy ride. But the challenge is stimulating, and there’s a particular thrill in hearing other people talk about my characters as if they’re real people. To me they are; I know them intimately.

Trish’s endorsement made me feel so chirpy I abandoned research into auto-immune hepatitis (for my current novel) and went off to try out a new recipe for a raspberry and amaretti gateau. Nicely used up the last of the raspberries from the garden.

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Rating and reviewing

It’s commonly said that a bad review is better than no review, but I can’t imagine any author enjoys getting slated by readers or receiving poor star ratings. Indeed some writers deliberately never look at the reviews lest they are derailed by them. But what a subjective thing it all is anyway. Your meat, my poison, and all that.

The Kindest ThingLet me illustrate. Last week I read The Kindest Thing by Cath Staincliffe. It was recommended to me as ‘your kind of book’, and the Kindle version was a mere 99p, so of course I snapped it up. And indeed it is my sort of book. It’s accessible fiction dealing with a thorny on-going medical ethical issue in a challenging way, leaving me asking, What would I do in these circumstances? Familiar? In fact it’s the closest thing to my own novel about assisted dying (Right to Die) I’ve seen thus far.

Basically it tells the story of 50-year-old Deborah who is on trial for helping her husband Neil to die rather than continue life with Motor Neurone Disease. Her own daughter reports her to the police. Her son’s precarious mental health is threatened. Prison gives her too much time to reflect on the repercussions of what she agreed to. Yep, my kind of thing definitely. And I enjoyed it.

As did many others. Most reviews I’ve seen are strongly approving: ‘beautifully written’, ‘pitch perfect’, ‘page turning stuff’, ‘sensitive’, ‘powerful’, ‘courageous’. The main protagonist is both likeable and believable, they said.

But a few folk, reading the same book, about the same characters, have slated it: ‘shallow’, ‘depressing’, ‘tedious’, ‘predictable’, ‘unlikeable cardboard characters’, ‘offensive and narrow-minded’, ‘cheesy’.

Oh dear. If someone said such things of my work, I’m pretty sure I’d succumb to a horrible sinking feeling. Possibly even go into a temporary decline. But why? One step removed, viewing these comments dispassionately, I can see quite clearly it’s a subjective opinion. The readers are free to express it. They might (or might not) even be having a bad day, or going through a rough patch themselves, or they may have a hidden agenda, or feel threatened by the author in some way.

In any event, it’s a known and accepted fact that we all like different kinds of writing. If you’ve ever belonged to a bookclub, even one made up of like-minded people, you’ll have experienced that reality. And haven’t you ever read a bestselling book that’s had rave reviews, and wondered what all the fuss was about? Be honest now, how many Booker prizewinners have you really enjoyed?

Me, I don’t care if everyone else loves a book, if I don’t, I don’t. End of story. OK, I might analyse the pros and cons more carefully if I’m decidedly out of step with respected opinion, but I’m not tempted to trot meekly along in the wake of the majority just to conform. Because there can be a myriad reasons in my life and belief system and experience and preferences why I personally feel as I do about that particular book. I am perfectly entitled to my subjective opinion.

So, what am I saying? Well, criticism feels very different when you’re on the receiving end.  But perhaps we authors are unrealistic from the outset. We shouldn’t expect to achieve unqualified 100% five-star ratings. Remember those famous lines from the poet John Lydgate, later adapted by President Lincoln:

‘You can please some of the people all of the time, you can please all of the people some of the time, but you can’t please all of the people all of the time.’

Cath Staincliffe’s ratings have given me new heart. From henceforth I shall not even attempt to appeal to all tastes. I shall concentrate on being true to myself. And if and when a poor review pings in, I shall pick myself up, dust myself off, and get right back on that writing horse. God willing. Oh, and if that fails, re-read this post!

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Marriage, death and blueberry muffins

I’m frequently amazed at how many articles in the newspaper touch on my subject area on a daily basis. Sensationalised often. Distorted even. But drawing attention to important issues nevertheless. Take yesterday’s edition for example.

A judge has just ruled that a 67 year old man who has had Motor Neurone Disease for 10 years, may be allowed to end his life peacefully by declining treatment. So? you might be asking, I thought any mentally competent patient had the right to refuse medical treatment. Indeedy. But in this case the patient has been unable to communicate his wishes directly for some time; he can only use eye movements. An advance decision was formally drawn up last November after several discussions and with all the important people present. Watertight you might think, but apparently a carer who wasn’t there, cast doubt on the nature of the patient’s consent, hence the case went to the High Court for clarification. Sad that the family needed to endure this additional delay and burden. The question is: Would you consent to this for yourself or your loved one? As a professional, would you have allowed it to go ahead unchallenged?

Still with death, an American study (published in Personality and Social Psychology Review) has discovered that awareness of mortality can have positive effects. Really?!! The headline put it: ‘Save your marriage by thinking of death’. Not surprisingly, it makes people value the finer things of life more. But, how ready would you be to clutch at this particular straw?

The social network site Facebook has just launched a new feature to encourage users to sign up as organ donors. It’s reported that 6,000 signed up to Donate Life America by the end of the first day. A ‘health and well-being button’ allows users to register with the optional extra of telling their friends (or the world if they prefer) that they have become potential donors. Question is: Are you a registered donor? If not, would you be more inclined to join up this way?

Me, I’ve been in the business long enough to have registered as a donor online years ago, and to have drafted a formal advance directive which has been duly signed and witnessed, and to have notified my family of all these wishes and intentions. But I’m only too pleased the media are raising the nations’ consciousness of the issues.

But to end of a lighter note … also in the newspaper this week a survey carried out by a food company, actually reported that one youngster in six regarded a blueberry muffin as ‘fruit’ that counted as part of their five-a-day recommended intake. As they say: You’re avin a larf!

Seems to me journalism could be fun!

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