Hazel McHaffie

Children – ill, abandoned, adopted, murdered, massacred

‘It’s not fair!’

How often have we all heard that lament? Especially from children. If a sibling gets a bigger slice of cake; if a schoolmate gets them into trouble; if a parent doesn’t humour them … But there can surely be few scenarios more legitimately unjust than a baby having cancer.

Olivia Stanca who died this past week in a rooftop hospital garden in London after her life support machine was switched off, was born with adrenal cancer. How cruel, how unfair, is that? It spread to her liver. She was just one year old when she died.

In her short life she had survived two rounds of chemotherapy but was very vulnerable to infections. Having pulled out all the stops, in the end the medical staff at Great Ormond Street regretfully said there was nothing more they could do for her. Olivia’s story reached the papers only because her parents fought against medical opinion for her to be kept alive, desperately wanting to hang on to their little girl, but eventually this past week even they bravely conceded that it was simply not possible. As their lawyer said, there are no winners in this tragic scenario. Indeed.

But thinking about this little family and all they’ve endured made me reflect on books I’ve read recently about children. So I thought I’d share my thoughts on three of them as my little tribute to all families everywhere, like the Stancas, who are grieving today. Three books moreover by the same author, herself a mum, which I read consecutively – a useful way of getting a feel for a particular person’s writing … if you don’t get too jaded by the third one, that is!

Gudenkauf novelsIn previous posts I’ve shared with you my enjoyment of several writers who tackle challenging issues similar to the ones I dabble in – Jodi Picoult, Diane Chamberlain, Lisa Genova. This time it’s Heather Gudenkauf who gets the ‘fans of Jodi Picoult will devour this‘ sticker. She’s a classroom teacher living in Iowa, who tucks writing novels into free moments between work life and bringing up three children of her own. Already I’m impressed.

These Things Hidden tells the story of three girls bound together by circumstance and horror, of a prison sentence, of a childless couple whose lives are transformed when a baby is abandoned in a fire station and becomes theirs to adopt. These Things HiddenParental love swells as little Joshua grows up, overcomes his phobias and tantrums, and takes his place in the swell of children starting school.  But all is not what it seems. Gradually a back history emerges … mental instability, fractured relationships, murder and intrigue … that keeps the pages turning from beginning to end and the brain whirring. What makes a good parent? How much should any one person be asked to sacrifice for their nearest and dearest?

A school shooting forms the core of One Breath Away (definitely shades of Jodi P here!)  Parents are waiting at the gates in agony, news of what’s going on inside patchy and conflicting – parents with unresolved issues, parents who didn’t say proper goodbyes, who are not dressed for publicity. And then – horrors – there’s the mother who thinks the gunman could be her son. Inside, the lone gunman is holding a classroom full of 8-year-olds at gunpoint. One Breath AwayIntrepid teacher, Mrs Oliver, tries to bargain with him: if she correctly guesses why he is there will he let the children go free? ‘Yes,’ he replies, ‘and for each wrong answer I get to shoot one.‘ But the blame, the gunman says, will lie not with the teacher but with a single police officer: ‘you get to live with the knowledge that the death of these kids and their teacher is all because of you.‘ Gudenkauf maintains the suspense through short sharp chapters to the very end. We’re left wondering how such tragedies can happen. How would we respond if our child/grandchild was held hostage by a madman? How would we weigh the lives of other people’s children against the welfare of our own families? It’s a bit like the question: should we ever pay ransoms to terrorists? Would you pay up if your son/daughter was the one held hostage? … isn’t it?

In The Weight of Silence two six year old girls go missing. One of them, Callie, has selective mutism, Petra is her best friend and her voice. Her mother Toni grows increasingly frustrated … and scared. The Weight of SilenceSuspicion mounts. Her brutal husband seems to be missing; the man she has loved since childhood is behaving oddly; her son is convinced his sister is in the woods; there are two sets of footprints in newly raked soil but one of them is made by a man’s boot. The whole neighbourhood is on the alert. And then suddenly mute Callie rushes out of the trees, alone, and utters just one word, a word that conjures up a scenario too appalling to contemplate. Just how far would any of us go to protect our families? How loyal would you be to your abusive partner?  Who would you believe?

As with all Jodi Picoult lookalikes, Gudenkauf’s novels are the staple diet of book clubs. Meaty topics, haunting questions, a tense plot, literary challenges. Plenty to get your teeth into. But it’s all just fiction. The last thought must be with real live parents who really are enduring loss or life-or-death struggles with their children. My heart goes out to them.

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Screenwriting

To my chagrin I must admit that I rarely note, almost never remember, the name of writers who are deputed to convert books into film scripts. Shame on me indeed; I more than most should value and acknowledge the work of my fellow writers. But just think for a moment … how many become household names? Very few, I’d suggest.

One notable exception though, as of this week, is Sarah Phelps, the lady who was commissioned to turn JK Rowling‘s The Casual Vacancy, into a 3-part TV programme for the BBC (part 1 scheduled last Sunday evening.)The Casual Vacancy She featured in the media, even appeared in person on the Breakfast sofa. And the newsworthy aspect was … ? She had been bold enough to change the ending of a hugely-hyped book by one of the most famous writers in the world. Wow!

Now, if you haven’t read TCV, let me tell you, giving it a different ending is a big deal. A very big deal. I reviewed the novel on this blog ages ago, and commented on how bleak and miserable it was, and how it all ends in tragedy for Krystal, the one young girl we were rooting for.  Well, unlike me, the screenwriter wanted a happier ending; the existing one would lose the viewers she reckoned. So she changed it to something more redemptive. More than that, she was singing the praises of JK Rowling who had been gracious and understanding about her adaptation. And hats off to JKR indeed. That’s some concession. (OK, OK, I know, the cynical amongst us might also add: and all good publicity!)

But it got me thinking. How would I have responded to someone tinkering with my carefully thought-through storyline, I wonder? I’d be pretty sensitive at the very least. Proprietorial? Possibly. Generous enough to accept the screenwriter’s judgement and wisdom? I don’t know. Depends on what was involved, I guess, how much narrative integrity was at stake.

That led me to think of other adaptations. Personally I’m always rather ambivalent about seeing a film or play of a book I’ve enjoyed, mostly preferring to cling to the scenes and characters of my imagination. And my heart goes out to those authors whose stories are really distorted.

My Sister's Keeper

My Sister’s Keeper

For example, I really regretted seeing the film My Sister’s Keeper. In Jodi Picoult‘s book of the same name the lawyer’s guide dog features large – just what is he protecting his master from? The lawyer himself is very secretive about it, giving a different explanation to everyone. It’s a significant thread in the story with the truth only revealed towards the end in a dramatic court scene, but it doesn’t feature at all in the film. Then there was the ending, changed completely, outraging many readers – including me! And certain characters were either omitted or altered substantially and irritatingly.

So when a film is sensitive to the original I’m extra delighted. Birdsong by Sebastian Faulks was a case in point.

Birdsong

Birdsong

The Book Thief

The Book Thief

The Book Thief and To Kill a Mocking Bird (the version with Gregory Peck as Atticus Finch) and War Horse were three others that didn’t disappoint. (Just click on the pictures for the official trailers.)

To Kill a Mockingbird

To Kill a Mockingbird

War Horse

War Horse

The people and places may look different from my imagined ones but their characters are true and the basic messages are intact. Indeed, in some ways, those penetrating looks, those sudden silences, the body language, add poignancy and emotional depth to the written word. And when that happens, I sit in awe of any scriptwriter who can capture the very essence of the story and recreate it for an entirely different medium. I’ve tried writing plays and believe me, it’s a whole different ball game from writing a novel. So when Jo Rowling says that Sarah Phelps is at the top of her game, that’s a huge tribute.

To Kill a Mockingbird

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Literary pearls

This week’s dramatic announcement that Harper Lee’s second novel is about to be published more than 50 years after her runaway success,To Kill a Mockingbird To Kill a Mockingbird, has given me renewed hope. It really really doesn’t matter that my own timetable has been derailed by illness. I should simply relax and enjoy this ‘sabbatical’ (four months so far and counting).

One notable bonus is that it has given me space to read a more than usually wide range of books – when the physical body is reduced to sleeping/resting for a considerable portion of the day, it helps psychologically to let the mind soar free. And I’ve been struck by the sheer magnificence of other writers’ writing. I mean, who wouldn’t stand in awe of Harper Lee’s delicious child’s-eye view of the eccentric and prejudiced Deep South of the 60s? And listen to her description of the heat in the tired old town of Maycomb:

‘… bony mules hitched to Hoover carts flicked flies in the sweltering shade of the live oaks on the square. Men’s stiff collars wilted by nine in the morning. Ladies bathed before noon, after their three o’clock naps, and by nightfall were like soft tea-cakes with frostings of sweat and sweet talcum.’

Or the narrator’s formidable aunt:

‘To all parties present and participating in the life of the country, Aunt Alexandra was one of the last of her kind: she had river-boat, boarding-school manners; let any moral come along and she would uphold it; she was born in the objective case; she was an incurable gossip. When Aunt Alexandra went to school, self-doubt could not be found in any textbook, so she knew not its meaning. She was never bored, and given the slightest chance she would exercise her royal prerogative: she would arrange, advise, caution, and warn. She would never let a chance escape her to point out the shortcomings of other tribal groups to the greater glory of her own …’

So this week I thought I’d share some other pearls discovered in my mental travels. In no particular order …

A pithy but graphic summary of an illness:

‘Thinness remains the god of glamour, the god of control, popularity and success. Thinness trips along on her finest stilettos with her bone hips exposed through layers of fabric, waving her stick arms and calling like the Pied Piper for new children to follow. Sadly they do. But this is a false god. This is a god that draws to the grave. Thinness laughs as her new charges refuse their food, spit out, vomit in secret and spin in front of mirrors to look at backs where a bony spine chatters, still exclaiming that they are so fat.’  (Ruth Joseph in Remembering Judith)

Books on my Shelves-2A vivid metaphor:

‘Mamie’s old people’s home is something else. I wonder how much it costs a month, a luxury home like this? Mamie’s room is big and light, with lovely furniture and lovely curtains, a little adjoining living room and a bathroom with a marble bathtub, as if Mamie could care less that her tub is marble when her fingers are concrete … Besides, marble is ugly.’   (Muriel Barbery in The Elegance of the Hedgehog)

A useful perspective for a writer:

‘To relax my mind I remember the following:

First, I am not the centre of the universe. What a load that takes off!

Two, I do not need to write the piece that ends all pieces. It does not exist.

Three, life is meant to be enjoyed.’

(Dahlia Fraser in ‘How I Keep Going’ for Mslexia Winter 2014/15)

Books on my Shelves 3A wonderfully evocative report of a real life event:

‘It is now five and a quarter years since Sir John Chilcot began his inquiry into the Iraq war. Yesterday I spent what felt like five and a quarter years listening to him talk about it. On and on his answers – for want of a better word – drifted. You could practically hear the seasons changing outside …

Into the committee room he shuffled, wearing the patient, slow-blinking frown of an elderly tortoise …

I don’t wish to suggest that Sir John is inarticulate. He is, if anything, too articulate. Ask him a question that demands a simple yes or no and you will receive, in their stead, a grand unfurling of impeccably constructed verbiage. He speaks funnily enough, in the language of an official report: clauses as long as sentences, sentences as long as paragraphs, paragraphs as long as pages, now and then slipping seamlessly into a footnote and then seamlessly out again.’    (Michael Duncan writing in ‘Seven minutes to say hello’ for the Telegraph, 5 February 2015 )

A  wise but humorous observation:

‘Unpunctuality is the impoliteness of policemen.’  (Ruth Rendell in Not in the Flesh)

An unusual description:

‘… one of those houses – or its living room was – which are furnished with most of the necessaries of life, things to sit on and sit at, things to look at and listen to, to supply warmth or keep out cold, insulate the walls and cover the floors, but with nothing to refresh the spirit or gladden the heart, compel the eye or turn the soul’s eye towards the light. The predominant colour was beige. There was a calendar (Industry in Twenty-First Century UK) but no pictures on the walls, no books, not even a magazine, a small pale blue cactus in a beige pot but no flowers or other plants, no cushions on the bleak wooden-armed chairs and settee, a beige carpet but no rugs. The only clock was the digital kind with large, very bright green, quivering figures.’    (Ruth Rendell in Not in the Flesh)

Books on my Shelves-1What a fabulous thing the human mind is that it can conjure such eloquence out of a mere 26 letters. And how fortunate am I to have a roomful of books stacked floor to ceiling to keep me engrossed no matter how long I have to spend indisposed. Who knows, maybe by the time my heart is functioning normally again my bookshelves will be empty! Although I must confess I struggle to send books I’ve loved and admired to the charity shop.

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Mitochondrial donation – a lifeline or an historic mistake?

Imagine you’re in your late thirties. You have one child of eighteen months, Mia. Beautiful, much loved, and long awaited. But Mia is suffering from a devastating disease which is damaging her brain and other organs, she can’t eat or sit up or smile, she has frequent seizures. More than that, you know that you, her Mum, carry this disease; you are the one who passed it on to her. She has at most a couple of years to live. Before she even reaches school age you will be attending her funeral. And any future children would be very likely to inherit the same condition and go the same way.

Now imagine a doctor tells you you could have a child who is healthy and free from this terrible disease. Indeed that he could wipe it from your family entirely. For ever.Newborn baby

Now you’re talking! It’s a no-brainer surely. Who in their right mind would say no?

Ahh … well, there are some people – a lot of people actually – who would say to you: ‘No, I don’t want you to be allowed to have this healthy baby. And I’m going to campaign with all my might to stop it being legal for you to do so. I have my healthy normal kids, but you are condemned to heartache and loss because of a quirk in your genetic makeup. And my moral indignation trumps your biological rights.’

Yep, you’ve twigged. We’re talking about mitochondrial diseases. The mitochondria’s the bit outside the nucleus which doesn’t pass on any personal attributes but which helps to produce energy; the so-called power house of the cell. And faults in this area can result in terrible life-limiting diseases. Journalists talk about ‘three-parent babies’, but that’s an emotive and misleading and singularly unhelpful term. Does anyone refer to infants born via artificial insemination by donor in this way? or surrogate pregnancies using donor eggs? and yet they are more three-parent than the mitochondrial variety. Because only a miniscule amount of mitochondrial DNA (less than 0.001%) is from the donor, none of it responsible for the characteristics of the resultant child; almost all of what the infant inherits is in the nucleus, and 100% of that comes from the parental couple themselves.

On Tuesday this week parliament debated whether or not the UK should become the first country to permit mitochondrial donation to eradicate severe debilitating diseases of the mitochondria. Permission was approved. It’s worth noting that the UK has one of the most rigorous regulatory systems in the world when it comes to reproductive medicine and these various stages of consultation and approval are one aspect of that rigour.

Once again, though, up jump the zealots and pontificators and detractors – they’re attracted to developments in the field of fertility like iron filings to a magnet. But this time it’s not just the usual extreme suspects who are objecting, even the Church of England spokesmen on medical ethics are using terms like ‘irresponsible’, ‘an ethical watershed’. Why? QuestioningWell, at its heart is this factor: the procedure will fundamentally change the genetic makeup of an embryo in such a way that it will alter the inherited characteristics not just of one single individual but of future generations: modification of the germ line. The changes will be passed on; there’s no going back. And who really knows what might result from that? Nobody, that’s who. Nobody can guarantee the long term effects, because we have no data (human at least). None exist. It’s a new procedure (although in reality work has been going on for 15 years behind the scenes in preparation for this moment), but potential increased risks such as premature aging and cancer have been mooted. OK, three scientific reviews have concluded that it is unlikely to be unsafe, but it’s also a fact that scientists do not fully understand the interaction between the nuclear DNA and the mitochondria, which leaves some important questions unanswered.

However, for me this balance of risks and benefits falls into the same category as Lord Saatchi’s Medical Innovation Bill. When the chips are down, when there is nothing but bleakness, tragedy and death ahead, isn’t there a case to be made for well-informed patients/parents to take a calculated risk? We aren’t talking about offering this procedure to the rank and file of childbearing couples after all; only a minority for whom the alternative is too terrible, too heartbreaking, to contemplate. Don’t all scientific discoveries take a leap of faith at some point? Of course the researchers and scientists need to keep working to explore optimal conditions and refine techniques and enhance safety, but that’s true of even the now-common procedures like IVF. If mitochondrial donation is allowed, the children born this way will need to be monitored closely for the rest of their lives, and their children after them. Every step will be scrutinised minutely.

The HFEA Act requires that the embryo be treated with special respect. Quite right too. Few would argue. Misunderstandings are much more to do with the perceptions of what is proposed. So let’s clarify. Scientists are NOT trying to enhance humans in any way, they are not even trying to alter a child’s characteristics. They are aiming to prevent crippling and often fatal diseases and avoid couples now and in the future suffering the incomparable heartache of losing their children in these tragic potentially-avoidable circumstances.

Religious adherents may protest loudly, and indeed in our democratic society, they have a right to their opinions, but what of the Biblical injunctions: Do to others as you would they should do to you, and judge not that you be not judged? Should a Jew or a Muslim or a Roman Catholic or an evangelical Christian or whoever impose their specific viewpoint on Mia’s Mum? On society in general? These are terribly difficult and painful moral and personal issues which affect couples at a very fundamental level. What gives others the right to dictate, I should like to know?

Religious objections aside, a valid sticking point for a lot of people is one of safety and timing. Pre-clinical safety tests have not yet been concluded, and until the results of those investigations are known, it does seem premature to rush through new legislation.

So, we aren’t there yet. Now that the new legislation has passed this week’s hurdle, it comes before the House of Lords on 23 February. If it’s successful then there follows a careful and exact and rigorous process of trials. Caution is the name of the game just as it was with IVF; scientists agonised waiting to see if those babies were healthy. It’s possible the first human trials could begin in October this year, with the first babies born in autumn next year.

The idea that this is some form of malign genetic manipulation is nonsensical, but I did smile at the terse letter to the Telegraph from a man in Aylesbury:

GM crops, bad; GM children, good. How very strange.

He could go far in the literary world but perhaps not the scientific.

What do you think?

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The Fault in our Stars

OK, I know everybody’s heard about this book – it’s been in the top 10 works of fiction; the film version’s had a fair old hype too. And indeed, I read it some time ago but events overtook me and I’ve only just got around to posting my blog about it.

The Fault in our StarsOn the face of it a love story about two terminally ill teenagers, written for teenagers, sounds as if it’ll be either mawkish or depressing. And this is no glossy utopian take on death; the narrative doesn’t shy away from the horrors of serious illness, the mundane distasteful physiological consequences as well as the more slippery psychological ones. But somehow The Fault in our Stars, in John Green‘s hands, manages to achieve a curious appeal all its own. If you go to his website and watch his video clips, you’ll see he speaks much as he writes – in a breathless rush.

Green is an established writer for young adults and he’s well able to capture the language (‘middle-school vernacular’), the thinking and priorities of teenagers, the uncertainties, the emotions, and he does so with precision and poignancy … most of the time anyway. I realise youngsters with cancer have a wisdom and maturity beyond their years, but I confess, some of the characters’ thoughts and exchanges stretched my credulity a tad at times. And yet that’s part of what the book’s about, a level of sophistication and erudition and insight that’s both profound and disturbing. I liked the combination of pathos and laugh-out-loud humour, the sensitivity balanced by mockery and wry wit – about serious issues like life, death, love, loss and grief. My kind of subjects.

The story line is simple. Sixteen-year old Hazel Grace is on borrowed time. We know from the outset she’s terminally ill with secondary deposits in her lungs after thyroid cancer. There’s no hiding her condition – she drags an oxygen cylinder behind her wherever she goes. Enter beautiful heart-throb Augustus/Gus, aged seventeen, who’s already lost a limb to osteosarcoma. Add to the mix heart-broken jilted Isaac who’s about to have his second cancerous eye surgically removed, and boy, you’re already wondering, can I take much more of this? But these teenagers aren’t sitting around feeling maudlin, no siree; indeed they have a refreshingly robust take on illness. The dialogue sparkles with raw in-house acceptance, mutual understanding and gallows humour. Their take on everything from a hand on a false knee and dubious jokes about blindness, to the ‘incessant mechanized haranguing of intensive care’, and the unnatural parting of a dead boy’s hair, is coloured by their up-close and personal experience of teetering on the edge of oblivion.

The story line might indeed be simple, but the messages beneath it are anything but. At the end of the text the author himself appends a note: This book is a work of fiction. I made it up. Neither novels nor their readers benefit from attempts to divine whether any facts hide inside a story. Such efforts attack the very idea that made-up stories can matter …

And that is certainly the point of this book: the made-up story matters. I wasn’t reduced to tears, not even nearly, but I did feel vaguely disturbed and challenged. The Fault in our Stars won’t be in my top one hundred favourites, but it was well worth reading. Next question: Should I watch the film? I’m usually loathe to see a dramatisation of a book I’ve read; the mismatch is too uncomfortable and disillusioning. I might just make an exception here.

Oh, and I bought a copy of the book for my teenage granddaughter for Christmas. That’s how much I recommend it.

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Left Neglected

Isn’t it weird how things you read so often resonate with real life? They seem to jump off the pages. Some of it’s serendipity, some of it presumably just because we’re preoccupied at some level with a particular facet of life, making us super-sensitive to any mention of it anywhere it crops up.

That’s how it was with Lisa Genova‘s Left Neglected for me. (Clever title, by the way.) After a set back with my own ongoing health problems this past week, my upbeat facade slipped a bit; despondency crept round the edges of my guard. Sigh. Would I ever get back to full capacity and pick up the strands of my previous working life?

OK, distraction required urgently. Tidy desk … light a scented candle … reach for the next book on my tbr pile.

Left NeglectedAnd there it was: Left Neglected.

The protagonist Sarah, a young mum of three, brain damaged in a car accident, is struggling with a crisis of confidence. Will she ever get back into her high powered, multi-tasking, crowded, demanding life again? And boy, this woman has far, far bigger mountains to climb than I; much, much further to fall. Already my own task assumes less daunting dimensions.

But so much of what Sarah experiences resonates with me. There’s …

the everyday, no-big-deal but assured voice’ she and I reserve for visitors …

the resentment we feel towards those who would protect us from work-related tasks lest they stress us out: ‘Focus on you, don’t worry about work’ …

awareness of our own powerlessness: ‘The therapy might work and it might not. I can work as hard as I’ve always worked at everything I’ve ever done, and it might not be any more effective that just lying here and praying’.

Then there’s the lurking sense of day-to-day failure: ‘This is not the confident image of health and competency I was hoping to project’ …

not to mention the unspoken dread for the future: ‘What if I don’t recover 100 percent?’ …

in spite of the oft-repeated rallying cry: ‘I’m a fighter, I can do this.’

Lisa Genova is a neuroscientist by background which probably accounts for her choice of topics and the authenticity and insightful awareness of her writing. I loved her first book about dementia, Still Alice (now a major film). This time she has totally captured the real feelings of someone facing the ongoing issues of serious debilitating illness. The bonus is that her writing is also a delight to my soul. Listen to the way she introduces Sarah’s little girl Lucy who’s 5:

‘Lucy comes out of her bedroom dressed like a lunatic.

“How do you like my fashion, Mom?”

She’s wearing a pink and white polka-dot vest layered over an orange long-sleeve shirt, velvet leopard print leggings under a sheer pink ballerina tutu, Ugg boots, and six clips secured randomly in her hair, all different colors.

“You look fabulous, honey.”‘

Or the baby, Linus’ habit of crying relentlessly till a parent goes to him:

‘Plan aborted. Baby wins. Score: Harvard MBA-trained parents, both highly skilled in negotiation and leadership: 0. Nine-month-old child with no formal education or experience on the planet: too many times for my weary brain to count.’

If you’d told me Genova would take over 75 pages to even get to the accident I’d have gulped. Will there be enough hooks to keep me engrossed? No danger. She builds up a powerful picture of a beleaguered super-mom in her thirties juggling many competing demands. A nagging list is playing in Sarah’s head as she drives:

‘You need to call Harvard before noon, you need to start year-end performance reviews, you need to finalize the B-school training program for science associates, you need to call the landscaper; you need to email the London office, you need to return the overdue library books, you need to return the pants that don’t fit Charlie to the Gap, you need to pick up formula for Linus, you need to pick up the dry cleaning, you need to pick up the dinner; you need to make a dentist appointment for Lucy about her tooth, you need to make a dermatological appointment for you about that mole, you need to go to the bank, you need to pay the bills, don’t forget to call Harvard before noon, email the London office …’

By the time we get to page 75 we’re not surprised that she’s searching for her phone while she drives from A to B and momentarily takes her eye off the road. We might even secretly sympathise. How else will she stay on top?

And after all that happens to her, perhaps we aren’t surprised either to find that incapacity, space and time give her a different sense of priorities:

‘For the first time in almost a decade, I stop barreling a thousand miles an hour down that road. Everything stopped. And although much of the stillness of the past four months has been a painful and terrifying experience, it has given me a chance to lift my head up and have a look around … Maybe success can be something else, and maybe there’s another way to get there. Maybe there’s a different road for me with a more reasonable speed limit.’

Ahhh. Speed limits. I too have been evaluating mine. Must I also accept that ‘life can be fully lived with less’?

In her acknowledgements Lisa Genova thanks all the people actually coping with Left Neglect who shared their experiences with her, giving her ‘the real and human insight into the condition that simply can’t be found in textbooks’. And this human warmth is what makes the novel so much more than the anatomy of an illness.

So I salute you, Lisa Genova. And I thank you for putting my own problems into a healthier perspective.

Never Say GoodbyeThe next novel in my pile, Never Say Goodbye by Susan Lewis, takes me deep into the lives of women with incurable cancer … Ahhhhh. By now I’m deeply ashamed of ever having felt a twinge of self-pity.

I’ve since patrolled the Infirmary corridors in a torn and skimpy hospital gown (guaranteed to rob you of any sense of power or control you might be clinging to!) waiting for a medical verdict. My turn comes. I learn that a doctrine of doctors with yards of erudite letters after their names and aeons of experience with hearts of all descriptions, have put their mighty heads together to devise a plan to set me back on the road to recovery. It will take some months but I may not … may not … after all have to give up what I love doing. Thank you thank you thank you. The NHS at its amazing best. I may be dizzy and nauseated and fuzzy-headed and more tired than I’ve even been in my life, but I’m back on top of the world!

 

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Austen revisited

I’m intrigued. The name Val McDermid doesn’t conjure up pictures of muslin dresses and mincing men and gentle romance, does it? Far from it. But here she is re-writing Jane Austen – well, not the whole bang shoot; Northanger Abbey to be precise.

It’s part of the Austen project: six contemporary authors were asked to rework these famous classics in whatever way they choose. Not surprisingly there have been a fair few swift intakes of breath at the sheer audacity of such an exercise. I mean, Jane Austen? THE Jane Austen? Come on! Quite understandably some reviewers have been prejudiced against it from the outset.

Northanger AbbeyI confess I’m a convinced Austenite myself, and I personally didn’t want anyone to ruin her work for me either. That’s possibly why I turned to Northanger Abbey revisited first – my least favourite, and the least well-known, of her novels – well, that and because I was given it for Christmas.

The modern story is cleverly set in Edinburgh at the time of the Book Festival – I’m instantly totally at home! It moves to the abbeys in the Borders – familiar territory again. Both chosen by McDermid to reflect the essential characteristics of the original settings and thereby sustain the plot.

In brief … Cat Morland is a naive, home-schooled 17 year old from a sheltered background who lives life through fiction. So much so indeed that she believes novels to be source books for real life. When she meets the rich, handsome, well educated Henry Tilney she is captivated. By the time she arrives at his ancestral pile, she has woven deep dark secrets into the mysterious Northanger Abbey, convinced that it will reveal unimaginable horrors. And indeed the magnificent abbey becomes the personification of all her fantasies rolled into one. Secret compartments, forbidden corridors, locked rooms, bullet holes in a family Bible, a beautiful but deceased mother who mustn’t be mentioned, a Jekyll-and-Hyde patriarch, sudden departures … all fuel her imagination.

Reading Val’s own explanation for her choices – voice, setting, characters, plot – gives me additional respect for her skill, her versatility, and the seriousness with which she approached this commission. She has indeed been sensitive to the original. Perhaps the biggest difference between the two versions is the way the authors handle the suspense. We know from hindsight that boy gets girl – no cliff hanger there then. Austen also gave away the mystery early on, choosing to let the will-they/won’t-they element in the romance alone carry the reader through. McDermid – as befits a crack crimewriter – keeps the reader wondering ‘why’ right to the end … although the denouement when it came seemed ridiculously tame to me compared with the build up. But that really wasn’t the point of the exercise. The point is that Austen knew what makes people tick; her books are a reflection of real life. And McDermid has echoed the emotional intimacies of teenage girls, the obsessions of rank and heritage, the arrogance of handsome buccaneers, the blindness and ambitions of parenthood, the hypocrisy and humour of polite society. She has simply brought them up to the present day. In my back yard!

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Starving to death in Britain

She was a political activist from her teen years. But Debbie Purdy rose to fame when from her wheelchair she pleaded for – and won – clarity on assisted dying in 2009. Her memorable comment: “Being allowed to die would help me to live” summed up her thinking. She loved life, even with its significant difficulties, but the current law was leading her towards deliberately ending that life sooner than she would choose. Sad then that in reality, her end was a far cry from the dignified autonomous finale that she fought for in the courts.

She actually died on 23 December, before my last two posts went out, but it didn’t seem an appropriate note for Christmas time or Hogmanay, so I postponed it till today.

Debbie Purdy diesDebbie was only 31 when she was diagnosed with primary progressive multiple sclerosis. 31. She was 51 when she eventually died. 20 years of living with a severely disabling painful disease – outlined in her 2010 autobiography, It’s Not Because I Want to Die. When she appeared before journalists and the public she made no secret of her personal wish to go to Switzerland to die when life became unbearable; all she wanted was assurance that her Cuban husband, Omar Puente, (black, foreign and poor, so, she feared, particularly vulnerable) would not be prosecuted if he assisted her to get there. Her jubilant face when the House of Lords gave that reassurance lives in the memory. Assisted dying wasn’t yet legal but she could now live her life to the full and she was in no hurry to go.

But, when that point of unbearable suffering came, she could not afford the journey to Switzerland. Instead she went into a hospice, where she ended her life peacefully … no, starved herself to death. It took a whole year! How can this possibly be right? Even a few days before her death she was filmed saying if a cure became available she would be first in the queue for it, such was her wish to live. But not at all costs: “It’s not a matter of wanting to end my life. It’s a matter of not wanting my life to be this.” Harrowing to see her emaciated frame, hear her reluctance, feel her fear – you can watch it here if you can bear to. I can’t begin to imagine what it must have been like for her relatives and friends, and indeed those caring for her, to watch her deteriorate in this horrible way. Nor the courage and determination on her part to stick to her resolve for that long.

Advocates of a change in the law have capitalised on this story, drawing attention to statistics which seem to point inexorably in their minds to change: 60-70% of the public want it; legal and ethical opinion has swung in favour of it; two terminally ill people a month go to Switzerland to end their lives; ten times that number kill themselves secretly at home; to name but a few figures. It’s only religious zealots and medical authoritarianism that are holding us back, they claim; surely the best tribute to this indomitable campaigner would be to legalise assisted dying.

I’ve stated my own opinion elsewhere on this blog; I won’t rehearse it again here. Suffice to say I have my own reservations, my own tentative solution. But the very fact that, in this 21st century, in our affluent and democratic country, after two decades of mental and physical agony, a young woman took a year to die from starvation, must surely give every one of us pause for thought. What’s your definition of torture?

If not an assisted dying bill, what? In a decent civilised society we cannot stand back and allow such scenarios to be reenacted.

 

 

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Body image

The end of a year is traditionally when one takes stock before resolving to do better in the future, so in this spirit, on the very last day of 2014, I shall share one of my (many) failings with you.

I’m one of those countless people who feel dissatisfied with what they see in the mirror … in spite of being told donkeys years ago by a lovely man (himself a skilled potter) in our church that it’s a sin to do so on the grounds that the insignificant clay pot has no business criticising its all-powerful Maker. Sorry Derrick, but I genuinely do sympathise with folk who don’t like the casing they come in for whatever reason, and my personal problems are compounded at this precise moment by the ongoing necessity to define myself as ‘ill’. Me? I’m the strong energetic type who can rise above all weakness and still live life at a hundred miles an hour … Not any more it seems – at least not until the cardiologists ‘fix’ me! Since October when these shenanigans with my recalcitrant heart began, I’ve been aware of the need to consciously work at keeping my mood buoyant in the face of physical frailty. I don’t like what I see or feel.

So I suspect it wouldn’t take the genius of Freud to deduce that that abiding angst has quite a bit to do with my present conflict with my writing about body image. I’m struggling with the effort of trying to stay inside the skin of some of my characters who are even more tortured than I am. Body image, huh? Big subject. Cue size zero models, toddlers dressed provocatively, the obesity epidemic, self harming, cyber bullying, celebrity culture, cosmetic enhancement … you know the kinds of things our society is obsessed by nowadays. So where am I with it at the end of this chequered year?

Books on eating disordersRemember this row of books I bought by way of research a while back? Well, I’ve now read them all. Phew. Good job I’m stubborn! You’ll have noted that I haven’t reviewed any of them in this blog. Why? Because I don’t think you’d be interested. But for my own records I kept a tally of my assessment of them as I went – just a brief resume and my score out of 5. Hmm. Only three stood out as an enjoyable read, but, in fairness, a large percentage are teen fiction which isn’t my bag. Having read them all, though, I’m confirmed in my resolve a) not to write for young adults; b) not to focus on anorexia but to embrace a wider context; c) to strengthen the hooks to keep readers reading.

Question now is: can this new, more-fragile me personally cope with taking on a story which presents a much more challenging set of issues? Only time will tell.

However, thus far, I haven’t been dragged below the plimsoll line of my own tolerances, but total absorption with this topic would definitely not be good for my mental health – goodness, I’m borderline neurotic as it is! I’m also conscious of another phenomenon: the more I grapple with my characters’ uncomfortable emotions, the less they disturb me. So it will be important to remember my own initial reactions in order to be sensitive to the potential shock or outrage or revulsion or whatever of my potential readers coming to this subject without preparation.

Work to do then. But there’s a silver lining. At least when I’m absorbed in the lives of my protagonists l’m not sighing at the mirror! And I did get a stack of Christmas knitting done as I ploughed through this set of books. So it’s an ill wind …

Polo jumpers

Boys pullovers

So, here we are at the end of 2014. Thank you so much for visiting my scribblings. Special appreciation to those who’ve taken the trouble to contact me; it’s so heartening to hear about your thoughts and reactions and simply to know you really are out there. And I wish you all – whatever your hang-ups and issues – peace, health and happiness in 2015.

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Story telling

Christmas presentEven I am not mad enough to post a blog on Christmas Day!  But I can’t resist the temptation to give you a little Christmas present on 24th: a wonderful auditory experience.

The Reith lectures are prestigious radio talks given each year by eminent figures of the day. The 2014 ones were given by a man for whom I already have huge respect: Dr Atul Gawande. He’s a surgeon but also an accomplished writer, and someone who admits he’s in the business of disturbing people’s complacency.

Better: A Surgeon's Notes on PerformanceI’ve read and reviewed several of his books so I had high hopes, and his verbal presentations didn’t disappoint; indeed he made them remarkably conversational and free from humbug and jargon. The gift – to me – was that each one hinged around a compelling story, reflecting my conviction that stories capture an audience but can at the same time convey deep truths. I was instantly gripped; I was receptive to his messages. I hope they captivate you too.

In Boston the first talk began with a moving account of Dr Gawande’s son who, aged 11 days, was found to have a serious heart defect – diagnosed thanks to the wisdom and understanding of a paediatrician who noted that his oxygen saturation monitor was attached to the wrong finger, giving a false reading. Dr Gawande talked of his 37 nieces and nephews in rural India for whom such skill would not have been available, and led into the substance of his message, reasons why doctors fail: ignorance, ineptitude and necessary fallibility.

In the second lecture (in London) he gave a graphic account of a little girl who fell through the ice of a pond in Austria and drowned, but, thanks to extraordinary team work and slow but methodical application of science, was brought back to life and a productive future. From this he developed the idea of how systems built upon the knowledge and discoveries of the centuries can allow doctors to deliver incredible care. Discipline, every member of the team doing what they do best, makes daring possible.

Edinburgh was the setting for the third lecture and this time we heard about Dr Gawande’s daughter’s piano teacher. Peg had cancer and it was thanks to the compassion and sensitivity of those around her that she got to live out her last weeks and months doing what she loved best – teaching music; giving her pupils treasures they would never forget. From this moving narrative he unpacked the question of what to do when you can’t fix the unfixable and how important it is to really listen to the patient’s own priorities. Mere length of life isn’t the only goal; it’s how you live that shortened life.

For the last lecture in the series the speaker returned to his family’s roots in New Delhi. It was knowing that the requisite knowledge to save life existed elsewhere in the world but not in India, that drove Atul’s father to study medicine himself. He wanted that knowledge for his people. From here the speaker moved into the cultural differences that make the elderly a revered part of families, and that allow an elderly widow of 82, newly treated for heart failure, to regain her self respect by becoming a cook in her own huge care facility, whereas in the Western world she would be stripped of her value to society.  We segued smoothly into the importance of sustaining the reasons a person wishes to stay alive.

Beautifully done. And it’s those graphic stories that will remain with me. I shall hang onto that thought as we move into a new year and I try to pick up the reins of novel writing again after my enforced sabbatical. I wish you all the joys of discovery through reading.Christmas trees in snow

And all blessings of the season whatever it means to you. If you are sad or lonely or troubled, may you share something of the peace it symbolises and the warmth of kindness, and find the courage to hope.

 

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