Hazel McHaffie

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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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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