Hazel McHaffie

Edinburgh Festival

Reflections on a golden summer

It certainly was quite a summer, wasn’t it? Wall to wall sunshine for weeks on end – no craving a Mediterranean break this year! And it seemed to fly by, often leaving little time for reflection. But September has brought a brief lull in my diary and inevitably I’m looking back and wondering what I’ve learned from the experiences; after all it’s the job of a writer ‘to see what everyone else sees and think what no one else thinks’ – or so they tell me!

Our beautiful city is currently in the process of dismantling the trappings of the biggest arts festival in the world; it looks rather forlorn, much as packing away Christmas feels. But the memories of a feast for the senses are bright and lasting. I’d like to share two reflections which are relevant to the blog and impinge on my decisions as a novelist.

When I first decided to fictionalise medical ethical dilemmas it was because I was increasingly aware of how story-telling can bring an issue to life and touch us more deeply than any textbook or lecture or internet search. This reality was reinforced during the Festival. I understand the life and times and motivation of Martin Luther the Protestant reformer,

and of Dr Josef Mengele the German SS officer and medical experimenter,

far better than I knew before, having watched superb dramatisations from their perspective.

I have greater empathy with the children of Dresden (another beautiful city) since seeing it through the eyes of a young Eleanor (performed by her real-life granddaughter) hiding from the bombs unleashed by ‘our’ side, picking her way through the rubble of flattened streets, cobbling together a life from the ruins of war.

And the second reflection? There’s a huge wealth of talent out there! I witnessed only a miniscule fraction of it. In total there were some 317 venues across the city; 3,548 different shows were staged; 2,838,839 tickets were issued. Mind blowing, isn’t it? And the standard was high. Only two of the many shows I saw disappointed in any way, and even they were professionally executed (the content was simply not to my taste). And most had a serious message behind them.

So I’ve returned to my own novel with renewed energy. I too can contribute, albeit in a small way, to this wonderful resource. And autumn seems like the perfect time to knuckle down to it. The crops are almost ready for harvesting. The nights are lengthening. The weeds are slowing their pace. Visitors have returned home. I have space to prioritise work; poring over every word, every comma; ruthless in my editing. I already have two pages of questions to take to the experts to ensure every aspect is authenticated. Ahhhh, yes, authentication. I’m struck by how often truth is stranger than fiction; if I’d written such-and-such real-life story reviewers would have condemned it as ‘far-fetched’, ‘not credible’, ‘hyperbolic’.

A case in point: this weekend I read a summary of a serious case review published by Wigan Safeguarding Children Board, which featured a 10-week old baby who died after being strapped in a car seat in a hotel room for 15 hours. Tragic in itself. But, more alarming still, 3 of the parents’ children have died in the space of two years. Indeed, of the 7 children the mother has given birth to since June 2015, only 4 have survived longer than 16 months.The authorities were aware of the history: alcohol abuse, neglect, domestic violence, frequent referrals to child social care, mental health challenges. The review reported ‘The commitment of the services that supported the child and family in the years preceding the child’s death was unquestionable, and the reviewers have identified many examples of good practice by professionals in providing information and support.
What’s more, all 4 surviving children remain with their parents. Would you have believed this in a work of fiction? ‘Far-fetched’, ‘not credible’, ‘hyperbolic’, come to mind!

Notwithstanding, I’m making every effort to make my own tale, Killing me Gently, ring true. And much as I love the buzz of summer, it feels like coming home myself to be back in the study, lost in my writing. And who knows, maybe one day this story will be dramatised! Screenwriters, film directors, out there, if you’re listening ….

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Reflections on Mortality

The 2018 Festival is proving to be as spectacular as ever – so much talent, such variety. You’d need to be a complete Philistine not to find something to your taste and I’m having a ball. And there’s so much to soak up around and about the city besides the featured events. During a visit to Blackwell’s book shop for their Writers at the Fringe event, for example, I noticed a book display dedicated to the 70th anniversary of the NHS, several of the exhibits talking about the art as well as the science of caring, and as I sat waiting for the five authors to begin their presentations, it got me thinking.

Wouldn’t we all love to be cared for by a truly empathetic compassionate doctor in our last months, weeks, days? I found one recently – one moreover who recognises that ‘Doctors – like writers, artists, and spies – are professional people-watchers‘. Sounds like my kind of person, huh?

I’ve been intimately acquainted with death since the age of 18. To some extent health care professionals have to learn to maintain a safe distance in order to keep on giving, but it’s a difficult balance to achieve. I once worked with a lovely young doctor (who has been my friend for over forty years) who was so nervous when he had to convey bad news that he giggled. As his colleague I understood it was because he cared too much for his own comfort; the relatives couldn’t know that and were probably appalled by his seeming insensitivity.

Asian American doctor Pauline Chen learned through bitter experience too, and she’s taken the brave step of writing about the difficulties and pain of contemplating death and walking alongside people facing its reality in Final Exam: A Surgeon’s Reflections on Mortality. Like most naive youngsters she entered medicine with a rosy view of saving countless lives; she had no idea of the extent to which death would become such a haunting constant in her career. But in a society where more than 90% of patients will die from a prolonged illness, she joined the ranks of those whose task it is to shepherd the terminally ill and their families through the intricacies and pitfalls of the end, those who are expected to know how to provide comfort and support.

Initially Chen discovered from her mentors and teachers how to suspend or suppress shared human feelings, to adopt the twin coping mechanisms of denial and de-personalisation. At first, too raw to be let loose on patients, she learned to detach from the elderly lady cadaver in the dissection lab where the formaldehyde, used to preserve dead bodies pervaded her clothes and hands and hair – the olfactory version of a high-pitched shriek. Once out in the clinical arena, she had far more disturbing senses to deal with and she learned to avoid, obfuscate, reinvent, disguise, deny.

‘Even medical students chosen for their humanitarian qualities and selected from a huge pool of applicants may have their generous impulses profoundly suppressed by their medical education.’

But gradually, painfully, she came to realise, through a multiplicity of small inconsistencies and troubling paradoxes, that these techniques were in fact incapacitating her. She began to extricate herself from those same learned responses and to open herself up to something far more rewarding than curing someone. She came to see that when terminally ill patients were ‘Pushed to view their own mortality directly, they too would live the remainder of their own lives that much more fully than the rest of us.’ New dimensions, wider horizons, opened up to her: that, in fact, ‘… dealing with the dying allows us to nurture our best humanistic tendencies.’ And she came to appreciate the advice of a much respected colleague who was both oncologist and cancer patient: ‘You’ll be a better doctor if you can stand in your patients’ shoes.’ That the ‘honor of worrying – of caring, of easing suffering, of being present – may be our most important task, not only as friends but as physicians, too. And when we are finally capable of that, we will have become true healers.‘ I love the idea of it being an honour to worry and care.

Final Exam is a beautifully crafted book, from the simple but evocative cover and the so-apposite title page, through the quality paper, to the single tribute on the back from one of my favourite medical authors, Atul Gawande:
‘..a revealing and heartfelt book. Pauline Chen takes us where few do – inside the feeling of practicing surgery, with its doubts, failures, and triumphs. Her tales are also uncommonly moving, most especially when contemplating death and our difficulties as doctors and patients in coming to grips with it.’

In telling the stories of many of her patients alongside her own, Pauline Chen has generously shared what it means to have the grace and humility to examine our own imperfections and misconceptions, to learn from the honesty, pain and sorrow of others, to become a more empathetic and warm human being. We don’t need to be practising health care professions to learn from her example.

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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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Critical input

Edinburgh floral clockSo, we’re into the last few days of the Festival here in Edinburgh. Next week, after a grand finale firework spectacular on the evening of the 31st, this seething, happening, nothing-surprises place will metamorphose back into our quiet and dignified capital.

Levitating figureBook Festival placard

 

 

 

 

 

 

 

Since I wrote my last post I’ve been to an opera, several more dramas, and a couple of book events – including one where Marion Coutts was speaking (I reviewed her book, The Iceberg, about the death of art critic Tom Lubbock a couple of posts ago) alongside award winning Belgian, Erwin Mortier, whose book, Stammered Songbook, recounts his mother’s descent into dementia. My workaday kind of topics. However, I must admit the most valuable thing I brought away from this session was what not to do on the platform!

Edinburgh Book Festiival 2015But hey, what of my own writing, you may well be thinking? Well, good news! It took another giant stride forward this week.

As you know, I’ve had really helpful feedback from experts on limited sections of the novel, but that only takes me so far; I also need critique from people looking at the whole story and from a general readers’ perspective. So six very insightful and well-read ladies belonging to a bookclub already known to me, have been reading the first full draft of Inside of Me, and on Tuesday I went along to hear their verdict. They were tremendously positive and encouraging but I picked up some very useful pointers for improvements.

Now my task is to think through the wealth of suggestions from all quarters and decide what to revise, what to delete, what to leave alone. And I’m confident the end result will be a better, stronger book than that first draft.

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