Hazel McHaffie

Human experimentation

Sledgehammer drugs, induced comas, repeated electric shocks, brain washing, extreme forms of psychological torture, lobotomies … we’re into the stuff of nightmares, thrillers, and scary films. The Monkey-Puzzle TreeIn The Monkey-Puzzle Tree these are ‘treatments’ meted out by respected psychiatrists to vulnerable patients. But with sinister intent, for these scientists are actually testing techniques capable of turning innocent people into automatons who would do the CIA’s bidding even against their own will or moral scruples. Would even kill to order.

Pure fiction, huh? Not a bit of it. These torturous practices were actually practised … in my lifetime. During the 1950s and 60s the CIA instituted a series of experimental programmes in mind-control involving 144 universities, 15 research facilities/private companies, 12 hospitals and 3 prisons. Almost all of the subjects were unsuspecting American or Canadian citizens, ‘educated, productive, caring members of their community who for a brief time had ceased to function efficiently'; ordinary individuals who sought help for their problem (depression or chronic anxiety or drinking) from one of the top names in the country. None of them had irreversible mental problems or psychosis or schizophrenia when they presented, but after ‘treatment’ their sanity was permanently weakened. They were never the same again.

Author Elizabeth Nickson‘s mother was one of them. Simple postnatal depression brought her into the care of one of the psychiatrists leading these experiments, and he became a constant and malign influence in the Nickson’s family life.

Hard to believe that very few people were aware of these infamous regimes, even those snared at the heart of the web, but that was the case. Elizabeth, however, resolved to bring the reality to public attention in a novel way. She could have exposed the unvarnished truth as it actually happened to her family; instead she tells the bigger story in a way that’s intended to touch people more closely, more roundly – through fiction. In The Monkey-Puzzle Tree she is the narrator, Catherine, unwrapping the horror layer by layer ‘as warily as if it were a timebomb’, and then fighting to expose the injustice and barbarity. She stays close to her mother’s lived experience, retains the principal characters as they really were, but uses the literary device of fictionalisation to make the abuse even more gripping and immediate, if that’s possible.

WARNING: This post contains spoilers

The story begins with the attempted suicide of a young man of 31, Brian, and we’re instantly thrust deep into the psychiatric problems which beset the narrator’s family. Brian is her brother. Then, gradually, revelation by revelation, document by document, we learn of the ‘treatments’ inflicted on Catherine’s mother, ‘sweet innocent beautiful‘ Victoria Ramsey, following the birth of her children; ‘treatments’ which violate not just the Nuremberg Code but every decent code of behaviour. She and her co-victims were accorded no more moral worth than lab rats by the scientists in charge of the programmes. Moreover the things that were done to Victoria affected the whole family at a very profound level. Returning home after months of treatment the once lively vibrant mother is limp and grey, confused, darkly brooding, unreasonably fearful at times, absurdly hysterical at others. Her children ‘catch her moods like the flu’, they become resentful, needy, uncontrollable. The emotional and physical toll on them all is enormous and cumulative.

What’s more, the evil influences are still pervading the lives of Catherine’s family decades later. Phones are bugged. Nuisance calls happen at all hours. Parcels are tampered with. Cars are pranged. Viruses are blown into the face of Catherine herself in a supermarket. A bogus workman calls. Catherine’s father meets with a terrible accident. The threat becomes increasingly sinister.

Any attempt at bringing these cases to court has been thwarted at every turn by unseen forces, dragging them out till the plaintiffs are old and unnaturally infirm. And then Catherine herself gets involved in the fight; her life is again turned upside down.

Sunset Silhouette © kiwinz https://www.flickr.com/people/kiwinz/ Used under Creative Commons Licence 2.0

Monkey-puzzle tree. Sunset Silhouette © kiwinz https://www.flickr.com/people/kiwinz/
Used under Creative Commons Licence 2.0

In the midst of such terrifying horror it seems facetious to talk of writing styles, and yet, as a writer, I couldn’t help but admire the occasional flashes of literary delight.

‘He was pencil-thin, with a face God forgot to punctuate.’

‘… a small stiff, wiry hairdo of a woman ..’. 

‘A coven of black umbrellas hung furled on the railing on the steps down to the plane …’

‘Emotion was an embarrassing luxury, a fur coat worn on a sightseeing trip to the slums.’

This book is a sobering read because we know all along these nightmarish things really happened in the name of medicine.

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Back in the saddle

How do you pick up the reins of novel-writing after a 6 months break? Hmmm. I don’t know. Never done it before. So, a new challenge this week.

I was 34,000 words into my latest novel by last October when my heart suddenly decided to throw tantrums and I got sidetracked by disability and hospital appointments and assorted treatments. The plot was pretty much decided, the principal characters fully formed. But there was one narrative thread that I’d only sketchily researched: a young father’s mysterious disappearance. How would his family react? How would they start to track him down? Would the police get involved? Would a private investigator take such a case? How complicated would the search be? Could he vanish without trace? What if it was actually a suicide? … … …

Victor’s disappearance has been lurking somewhere in the deep recesses of my drugged mind all these weeks; but I’ve been powerless to pursue him. Rust and moss have gathered; neurones slowed. Now, post successful treatment, might be the very time to drag these questions to the forefront and get down to the real process of untangling answers. Hopefully coaxing brain, hand and heart back into writerly routines in the process.

As a first step, a few months ago, I’d bought a book on the subject in the Howdunit Series: Missing Persons: A writer’s guide to finding the lost, the abducted and the escaped. It’s written by Fay Faron who, in real life, runs a detective agency in San Francisco. She’s the author of various manuals and columns on the subject, but has also penned a work of fiction herself – ideal credentials for my purpose, you’d think. She should know what I don’t know I need to know as well as knowing what I know I don’t know!

Howdunit text

Off I trotted into the sunshine to see what she could teach me for my novel. Well, come on. Don’t rush me out of the lolling life too quickly. Sudden shocks aren’t good for dodgy hearts, you know!

I’m soon immersed …

What a readable book, well-written, full of anecdotes and facts and humour. Nice short subsections, clearly signposted. Ideal. The trusty notepad is soon covered in scribbles; hints and tips to myself. Ideas to give my story depth and authenticity.

Then it’s hotfoot back to the computer to plug the notes in at relevant points in the text. Now all I have to do is re-read the preceding sections and off I go again. Writing! Ahhhh. Feels like coming home after a prison sentence. And – better still, I’ve acquired sufficient distance from my prose to be able to edit ruthlessly. I discard pet phrases with gay abandon, lose whole chunks of unnecessary material, and then get stuck into the next chapter. Hmmmmm. Not quite as speedy and fluent as I’d hoped, but, hey, it’s a start. I’m back in the saddle. First re-learn how to trot again. Next week’s soon enough to try a gallop.

 

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Interview: Ann Lingard

Ann Lingard is a fellow novelist. She’s also a scientist after my own heart: she delights in sharing her knowledge and understanding and love of her subject in novel and accessible ways. The obscure, the complicated, the unnoticed … it’s her mission to bring them alive.

I caught up with her recently and asked about her ideas and plans.Ann Lingard

HMcH: Ann, your background originally was in science: you were an academic, teacher, and researcher, so you have a multiplicity of skills. Since then you’ve moved away from the traditional career structure and your trademark is blending science and art – an ambition very dear to me too! What prompted this sideways move for you?

AL: I made the actual decision to leave my academic and research life in Glasgow University when I was sitting alone on a hillside in Glen Orchy, watching my daughters playing some complicated game in a sheep-fank way below. At that moment I suddenly realised I’d had enough of the creeping bureaucracy and continual battle to get research funding for my group and – since the University was offering voluntary redundancy packages – that what I’d like to do was take the money and become self-employed and ‘be a writer and broadcaster’. Just like that! And of course, having made that decision, and with my husband’s backing, I had no option but to try to make a go of it.

But don’t get me wrong, I loved the challenge of research, of running a research group, and lecturing. I loved the busy-ness of the lab, students dropping in all the time, the chatter and laughter – but I also felt I wanted to grab the chance to do something very different. What finally prompted the ‘sideways move’ was that hillside. I can still see it: the minute flowers amongst the grasses – milkwort, tormentil, eyebright – a papery brown pupal case of a moth, the lichen patterns on the rocks (we called them ‘map-stones’). I so very strongly wanted to show this to other people, and to find out more myself. And when you think about it, that’s also what research and teaching come down to – so the underlying practicalities and ideas aren’t so different!

HMcH: I’m constantly working to ensure my novels are character-driven not issue-led. What are the features that you’ve had to be most vigilant about in your fiction?

AL: I’ve always known the sort of people I want to write about before I start a story – and if one is, for example, a geologist or a mathematician or a parasitologist, then the ‘issues’ of that person’s life and work will necessarily be part of the background to the story, to their conversation and behaviour, but it’s very important that the story is never ‘science-led’. If a character is an accountant, the story isn’t going to be about accountancy – the same is true if a character is a scientist, the story doesn’t have to be ‘about’ science.

The Embalmer's Book of RecipesIn the case of the mathematician Lisa (in The Embalmer’s Book of Recipes) her story is a little more complicated because she has achondroplasia, a form of dwarfism, and this of course means that certain medical, genetic and ethical matters are important to her (and anyone who knows her will be aware of this). But this doesn’t dominate her life, she deals with problems when she has to – mostly she’s busy working, living, loving … I’d like to think my vigilance, as you term it, has paid off, at least some of the time. I was thrilled when Tony Mann, a mathematician who organised the ‘Maths in Fiction’ conference in Oxford a few years ago, told me that ‘Lisa is [his] favourite fictional mathematician’.

 HMcH: I’m fascinated by the many ways you’ve found to weave the two cultures together. What has been the biggest challenge so far?

AL: I haven’t ever felt that this was a challenge! Perhaps because I’ve crossed the boundaries between science and the arts and crafts myself on quite a few occasions, and because I know other scientists who have done likewise. It’s possibly easier as a scientist to weave the ‘two cultures’ into your writing because you already know about the practicalities and emotions and jargon of a life in science, as well as knowing about life outside science. It’s a bigger hurdle to jump into science from a non-scientific background, but it’s perfectly easy with help from the right scientist – that was why I set up SciTalk, to help scientists and writers meet, back in 2003 (it’s now run on rather different lines by Newcastle University).

HMcH: And the greatest reward?

AL: I mentioned one great reward – that readers like many of the characters in my novels. Another is that readers discover and comment, often with amusement, on things they would never have known about otherwise – I bet not many knew that periwinkles on the seashore carry an attractive parasite, worthy of an artwork, that also infects fish and gulls!

HMcH: You’ve collaborated on many projects. Indeed, you and I met on one of them when we collaborated with the University of Edinburgh and the theatre company Sparkle and Dark during the Edinburgh International Festival 2013 to highlight the ways in which science and medicine could be brought alive through plays, novels, poetry. Is this a method of working that appeals to you?

AL: I always love collaborating! When I was a research scientist it was fun, a challenge, to find someone in an entirely different field who could help with a particular research problem, whether an organic chemist, a mycologist or a marine biologist. They bring different perspectives, different language, different ideas and skills – and that stimulation, of collaboration, is the same when writing fiction and non-fiction.

And in a sense, if I’m writing non-fiction about real people, that too is a collaboration with each individual, whether I’m talking to, listening to, and then writing about a ship’s-pilot or a stone-mason or a wildfowler, or participants in the Lothian Birth Cohort studies – I was privileged that in the latter case they were willing to collaborate with me and trust me enough to share their memories.

HMcH: Have there been any other projects that have held special resonance for you?

AL: A very different project was working with 12-14-year-olds from a school in the east of Cumbria, quite a long way from the sea. Thixotropy experienceThat age group very easily get turned off science, so the HoS and I decided we’d take them to the beach and show them all manner of things, such as dunes, shells, lugworms, barnacles, whatever we/they could find, in the hope that each student would find at least one thing to enthuse them. And then I would help them write about it, as a story, a poem, or a short article. It was enormous fun and very unusual, and they produced some fascinating and often very unexpected writing. (The mothers of the boys who tested ‘thixotropy’, while wearing trainers and jeans, probably weren’t so impressed!)

HMcH: My own interest lies in medicine and ethics and bringing them alive through fiction. What are your thoughts about blending the cultures in this field?

AL: Yes, this is tricky. My feeling is that, in creating someone like Lisa, or her friend Madeleine, I have to understand and empathise with both of them as much as I can, so that people who read about them will too. But this doesn’t mean that we should necessarily love them unreservedly; perhaps we need to be made a little bit uncomfortable, to confront and question our prejudices (see Are you sitting comfortably?)

So too, when I was writing the human stories of some of the exhibits in the Surgeons’ Hall Museum in Edinburgh. I felt it was very important to hint at the ethics of what had been done to them without being too overt: I wanted readers to become sufficiently involved in the life of the patient that they saw the treatments from the patient’s often uncomprehending or helpless point of view (as in Janet’s Story, and Andrew’s Story).

HMcH: Running a small holding, sheep rearing, weaving, leading shore-walks, writing articles and blogs, tweeting … You are clearly multitasking! I love the picture of you tramping the hills and coasts, observing the beauty all around in ordinary everyday things, and putting it into poetic language. What works best for you in capturing those special thoughts and experiences? And how do you fit writing into this busy life?

AL: It’s far too easy to get caught up in ‘being busy’! And there are certainly times of year – like now – when attention has to be focused on our small-holding. But it’s not just about trying to capture beauty, I don’t want to get drawn into the school of lush similes! The word ‘observing’ is a very important prerequisite for writing, and then questioning. Again, that’s a large part of being a scientist, too, so there are overlaps. I think, and plot, and puzzle how to write, most effectively when I’m walking – but I have to be walking in a place where I don’t need to concentrate too much on where to place my feet. Fell-walking is no good, but the shore is good, and working on the small-holding is good too. And then, provided I can even remember those ephemeral moments of brilliance, I can try to ‘capture’ them on paper or on-screen when I get home!

HMcH: I believe you’ve published five novels now. And what plans for the future?Seaside Pleasures

AL: I’ve just finished a major edit of a novel I wrote a few years ago, provisionally titled The Leech and the Pearl. It’s a story I love, so I hope it finds a publisher soon. If it doesn’t, I shall publish it as an ebook – why not?

And at the moment I’m getting to grips with Twitter, trying to post photos about the Solway Firth as frequently as possible as I want to show everyone that Cumbria isn’t just about the lakes and fells and Herdwick sheep. I’m discovering that social media gobble up your time!

HMcH: Thank you so much, Ann. Always a pleasure to exchange ideas with you.

Ann’s personal website is www.annlingard.com

Solway Firth articles are at www.solwayshorestories.co.uk; and the blog is at www.solwayshorewalker.wordpress.com

She also blogs as Ruth Kowslowski (the taxidermist in The Embalmer’s Book of Recipes) at www.ruthkowslowski.wordpress.com

And tweets about the Solway at https://twitter.com/solwaywalker

 

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The miracles of modern medicine

Two days ago I experienced a miracle at first hand. Please indulge me this week if this post is entirely personal.

TabletsFor the past six months my heart has been chaotic. In physical rather than medical terms I’ve been dizzy, sick, fainting, tired beyond belief, dependent on powerful medication to give even a pretence at normal functioning.

Two days ago I was lying in a special lab/theatre watching a rather shy, self-effacing man (known in the medical world as a consultant electrophysiologist) thread a catheter directly into that said heart, fire things at it, burn bits of it, provoke it in mysterious ways, and then calmly tell me he had successfully treated the malfunctions. Yep, there and then.

Here’s the written evidence in his own hand:

Verdict

Six hours later I WALKED out of the hospital at night unaided (yes, of course, with medical approval!). Three days of recuperation and I should be back to my original self – but hopefully wiser, more appreciative, more tolerant … well, miracles do happen! The only slight caveat is the heart might just have been stunned into silence and not actually cured, but that we should know within two weeks.

Words can’t express my personal gratitude for this transformation, but let’s hear it for our brilliant NHS and all who play a part within it. I met with nothing but kindness, professionalism, friendliness  and support at all levels in a clean and well-ordered hospital. God bless them all.

Get well flowers Off now for the prescribed ‘rest’ surrounded by the evidence of huge support from family and friends. Thank you all more than I can say. I am officially off the worry list.

PS. For those who have a highly developed curiosity gene or are interested in all things medical, you can watch a video of what an ablation involves here.

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Playing God

Playing GodAs a writer in the field of medical ethics myself, it behoves me to know how others portray these issues in fiction, whether they be script writers or novelists, so I’ve been keeping a tally for many years now.

The authors and editor of Playing God: Talking about Ethics in Medicine and Technology have clearly travelled a similar path, and it was this little book recently that took me back to my lists and collection of DVDs.

The sheer number of films surprised me, so by way of a change I thought I’d give you a summary of those I’ve noted which contribute an angle on the topics that fascinate me – alphabetically rather than supposed order of importance. Where possible I’ll link to the official trailers to give you a glimpse of what they’re like.

 

 

abortion:

Vera Drake

The Cider House Rules

assisted conception:

Seeds of Deception

Maybe Baby (link to trailer not permitted in the UK)

cloning:

The Island

Godsend

decisions about treatment:

Dying Young

The Theory of Everything

dementia:

The Notebook

Iris

Away from Her

The Savages

Still Alice

disease control:

Formula for Death

drug use/misuse:

Limitless

Color me Perfect

euthanasia/assisted death:

The Sea Inside

Million Dollar Baby

Amour

human experimentation:

Extraordinary Measures

The Manchurian Candidate

A Clockwork Orange

The Stepford Wives

medical paternalism/informed consent:

First Do No Harm

mental illness:

A Beautiful Mind

A Dangerous Method

All She Ever Wanted

Rain Man

The Curious Incident of the Dog in the Nighttime

Silver Linings Plaything

organ transplantation:

Coma

Dirty Pretty Things

 patient rights and medical malpractice:

Talk to Her

research malpractice:

Mortal Fear

saviour siblings/designer babies:

My Sister’s Keeper

Gattaca

Wow! I’d have really appreciated this steer when I started out! But there again, maybe I value them more because I’ve accumulated them slowly over the years. If you know of others please do let me know. Just add a comment to this post or contact me via my website. DVDs

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Occupational hazard

Heebie jeebie! Talk about illusions shattered …

After a five-month enforced ‘sabbatical’ I’ve been yearning for my old life. Odd, isn’t it, how once you have time for recreational pursuits they lose some of their appeal? Anyway, recently I decided to try to winkle my way back into the world of my next novel. After all, I want to be on the starting blocks ready for a quick get away once my heart is fixed; best to get into the zone at least, and start limbering up, I thought.

Top of my to-do pile is a book by leading authority in anorexia, psychotherapist Steven Levenkron. He has an excellent reputation in the USA so I’d been saving him for a special moment in the process. Now might be the right time. I’d be in safe hands. As Levenkron says himself, Anatomy of Anorexia aims to ‘demystify this life-ruining disease.’ Exactly what I need. It should help me inch myself back into the thinking of a young girl enmeshed in this dangerous practice, and home in on any errors in my understanding so far.

Off I went.

Anatomy of Anorexia

Well, this author is indeed a hands-on expert in the subject … tick. He writes well … tick. He holds the attention easily … tick. He intersperses authentic stories of anorexics with credible advice … tick. He explains in understandable language the origins, psychology, pathology, manifestations and management of the illness … tick. So well does he do so in fact that I found myself engrossed … overly identifying … and slowly drowning in all the horror of fractured relationships and distorted thinking and devious tactics and compulsions and young lives spiraling into destruction; even all the worries that burden the therapists. Seeing in stark relief all my own hang ups and obsessions. Yep, I was back in that tortured place I found myself reduced to after reading 30 novels on the subject.

Conclusion: this subject is bad for my personal health!

Time to get out and smell the crocuses!

Crocuses

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Ethics in the news

Every now and then I like to give you a glimpse into the world of medical ethics that continually fires my imagination. Just since I wrote my blog last week we’ve had the following stories in the media – apologies in advance, the list grew and grew as the week went on! See what you think about them? Do you have any simple answers? What would your solution be? Where does your mind travel? I’ll give you links so you can find out more about any of the cases you’re interested in.

Thinking about a solutionA grandmother has given birth to a surrogate child for her single son in his mid-twenties using his sperm with a donor egg. A judge has ruled that, though unusual, the arrangement is entirely lawful. But … is it ethically acceptable? Who is brother … father … mother …? What about sixteen years down the line? My mind goes into overdrive. How about yours?

Zach Parnaby is 20 months old and his family are already working down a bucket list of his favourite things before he dies. He has Krabbe Leukodystrophy. A pinprick screening test could have detected the disease soon after birth, giving them the option of a bone marrow transplant, but his parents were told it isn’t done for cost reasons. Is this reasonable and just? What price would you put on a child’s life? How would you juggle competing demands for limited resources?

Sarah Marquis is a 41 year old lawyer specialising in white collar crime. In 2008 doctors failed to spot that her appendix had burst and she was rendered infertile. The hospital have admitted liability but their lawyers are insisting that she deserves less compensation because she has been free to pursue her career without the breaks necessary for child bearing. Is this appropriate and fair? What if she went on to have a child through IVF … ?

17 years ago Zephany Nurse was stolen from her sleeping mother’s arms. But now, by a coincidence, she has met up with her biological sister and been reunited with her birth mother. Her abductor, whose own child was stillborn, apparently cared for her well, and this week we heard that Zephany refuses to testify against her. Should the woman be allowed to go free? Who do you think should best occupy the parenting role?

QuestioningFrom this week Canadian patients will be allowed to ask their physicians to help them end lives that have become burdensome to them. Their Supreme Court ruling was unanimous. Do you agree with them? Should the UK follow suit, d’you think?

Seven years ago an NHS consultant had a malignant growth removed from her thyroid gland and was discharged home the following morning, even though she was already showing signs of a dangerously low calcium level in her blood. However her medical knowledge told her she was in big trouble and she dialled 999, saving her own life. She has just been awarded a six figure sum by the hospital trust who admitted liability. How would this have all panned out if she’d been your average ordinary Joe Bloggs?

A US study has found that hard physical work damages a man’s sperm. So …? Does this give men the right to refuse to work on the grounds of their human rights? This could get interesting!

A proposal has been made that seriously ill patients could be offered organs from high risk donors (eg. cancer patients, smokers, the elderly or drug users) to help address the chronic shortage of available organs for transplant. Let your mind ramble over the possible scenarios of this in terms of the possible donors … Would you accept second best … for yourself? … for the person you love most in the world?

ImaginingThe NHS has just launched a controversial online calculator. It’s said to predict when someone will have a heart attack or stroke. Hello? Would you wish to be told that? Would you alter your lifestyle to prevent it? Would that negate the prediction? A couple of days later we’re told that ‘two families will be the first to receive personalised care based on their DNA as part of a national plan to sequence 1000,000 genomes.’ Is this science fiction coming true? Or a utopian dream? Where will it lead?

Back to the humdrum everyday … A survey of more than 1000 cancer patients has found that 1 in 10 is left unwashed, undressed or untoileted because of a lack of careworkers. And we all thought cancer was high priority; it was the elderly who were neglected. But then we hear that 26% of councils in England failed to properly consider the needs of people with arthritis, and 66% failed to consider back pain – conditions which affect 7 million people in England and account for £5 billion of NHS spending. What do these studies say about the allocation of resources and priorities? Oh, but hey ho, on the same page … scientists have found a class of drugs that dramatically slow ageing … in mice at least. So is this where the money will go? An elixir of youth? Ahhh, wait a wee minute … plans are in hand to build the UK’s first proton beam therapy cancer treatment centres in London and Manchester. Just who is deciding how and where the money is being allocated here? And if you were in charge …?

Still with resources … As from this week 16 very expensive drugs which have been clinically proven to increase the lifespan of terminally ill patients, are to be removed from the approved list of the Cancer Drugs Fund, as announced in January. Imagine your beloved was dying prematurely … Is it possible to reduce the well-being and hope of any family to pounds and pence? Should drug companies be allowed to raise obscene amounts of money from the tragedies of others?

Ex-serviceman Chris Graham is 39. He has a 6 week old baby. He also has early onset dementia. It’s in his genes. His brother has it; he’s 43 and totally incapacitated and dependent on others. Their father, grandfather, aunt and cousin all died of it in their forties too. Chris might have passed it on to his baby son. At what point should a halt be called to this perpetuation of tragedy? Should it ever? What if scientists modified the family germline …?

These news items were all reported in just one week of the year – a mere 7 days. They’re the kind of clippings that find their way into my ideas folders because they set my brain asking, ‘What if …?’. ‘Supposing ….’ ‘Would this be believable?’ Trouble is, my brain has a finite capacity … and shrinking! And there simply isn’t time to turn all these possibilities into stories.

(NB. For the purposes of this blog I’ve made no effort to pursue the facts behind these stories; I’m just sharing what anyone might know from the papers.)

 

 

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Fallibility in medicine

Any day now I expect to get a letter giving me a date on which a person unknown to me will thread a catheter into my heart and fire radio waves at it. There is a 2 in 1,000 chance he will kill me in the process. Not the time you’d think to be contemplating the matter of medical fallibility; but I can honestly say I am perfectly sanguine about this prospect.

Almost all surgical procedures carry risks. As pioneer Rene Leriche wrote rather more poetically in 1951: ‘Every surgeon carries within himself a small cemetery, where from time to time he goes to pray – a place of bitterness and regret, where he must look for an explanation for his failures.’ Note: Every surgeon. I’m also very aware that some specialties are more hazardous than others: hearts and brains are especially vulnerable areas to tinker with. Ahhh, brains! … now there’s a different kettle of fish altogether.

Henry Marsh is a brain surgeon, so eminent a one moreover that he’s been the subject of two major documentaries and was awarded a CBE in 2010 – click on this picture to see him in operationHenry Marsh in operation. But he hasn’t always been so single-minded and determined. His was a fairly circuitous route into medicine and even once he entered the profession he felt pretty jaded about it – bored even … until that is he encountered neurosurgery. Then he fell in love. In the thirty years since, practising his chosen discipline, he’s had countless successes, as well as his fair share of ‘terrible failures‘, all punctuated with periods of ‘deep despair‘. Not surprisingly. His is one of the most high powered, high risk, stressful and dangerous jobs.

If you think you carry a heavy burden of responsibility, if you ever feel guilty about things that have gone wrong on your watch, then I recommend you read his book, Do No Harm, published last year. In his own words:

‘As a neurosurgeon you have to come to terms with ruining people’s lives and with making mistakes. But one still feels terrible about it and how much it will cost … But nobody, nobody other than a neurosurgeon understands what it is like to have to drag yourself up to the ward and see, every day – somebody one has destroyed and face the anxious and angry family at the bedside who have lost all confidence in you … You can’t stay pleased with yourself for long in neurosurgery. There’s always another disaster waiting round the corner.’

Nor does he attempt to hide behind his colleagues or seek safety in numbers; he paints himself as fearfully human and flawed. That takes courage. He shares his bad temper, bad language, bad judgement calls, bad manners, his occasional lack of professional detachment.

Do No HarmBut through all the chagrin and curses shines his awe of the magnificence and significance of the human brain – something ‘infinitely mysterious’. As he slices into the soft white jelly he finds it almost incomprehensible even yet to believe that he is ‘moving through thought itself, through emotion and reason,’ rummaging amongst memories and dreams and reflections, all that is important in human life. But he is always, always aware that one false move, one moment of inattention, can take away for ever sight, or memory, the ability to recognise family, or the power to move … even life itself. And that sense of wonder and fear has never left him. Because of it, even today, moving towards retirement, he still gets stage fright, still feels intense anxiety, still builds in little superstitious rituals. He is brutally conscious of his own fallibility.

However, because he is now so experienced, he can afford to share stories from the past where he got things wrong. Would that all doctors could admit their failures and misjudgements and learn from their mistakes to the greater good of all. So often all patients/relatives are looking for is an apology. Mr Marsh is not afraid to offer one. I liked him the more for his humility.

Reading his account of life at the sharp end, though, I also experienced a lowness of spirit. As a patient, as a relative, as a health care professional, I’ve been frustrated and upset by inefficiency and disorganisation and absurd bureaucracy and bad practice within the NHS, and as an insignificant player in this vast organisation, felt horribly powerless. But I retained a vague sense that those higher up the food chain could bypass the nonsense and get results. Henry Marsh is at the top of the clinical hierarchy, but he too has been rendered impotent in the face of managerial and political directives. I so much identified with his feelings of resentment and anger when even he couldn’t get tests done, or results made available, or colleagues to cooperate; when he couldn’t prevent serious operations being cancelled at the eleventh hour.

I also felt his very human pain when conditions were inoperable, when patients developed catastrophic complications, when they died. And I silently applauded. Wouldn’t we all want to be looked after by a surgeon with compassion, a man who really cares? He learned this valuable lesson during his student years: ‘It was their (surgeons’) kindness to patients, as much as their technical skill, which I found inspiring.’ Indeed. Me too. I’ll be looking for that when I am finally admitted for that procedure on my heart.

A legitimate question to ask of one’s surgeon is: What would you do if it were your mother/your child? And this question resonates with Marsh particularly because many years ago he was the parent of a baby son with a brain tumour; he felt the frailty and powerlessness of any parent anywhere in such circumstances. The feeling was resurrected to a degree when he became a patient himself needing operations on both eyes, when he broke his leg, when his mother was dying of cancer, when his father developed dementia. It’s salutary being on the other side and, he believes, an important part of any doctor’s education. I could identify with this too; my recent experiences on the receiving end have highlighted the essential imbalance between the clothed and unclothed; the upright and the supine; the caregiver and the customer.

Do No Harm is alive with vibrant stories, details of many patients with many different conditions and diagnoses, treated with various degrees of success. I could personally never cope with the burden of mutilation, death and disaster that litters Marsh’s path; I have neither the psychological strength nor the ability to forgive myself. I’d have sunk without trace very early on. But I’m sincerely awed by the courage of clinicians like him who bear that burden for us all.

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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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