Hazel McHaffie

Fact, fiction and fabrication

You’ve heard me say it before: I have an ambivalent relationship with Jodi Picoult‘s books. I’ve dutifully read them all – well, of course I have; her trademark is an ethical question at the heart of the story. So I had to buy her latest one and … wow! it’s in a totally different league from her others. Nothing formulaic; no sense of déjà-vu at all.

But, as ever, she has thoroughly researched her material, and manages to ‘wear the learning lightly’. The descriptions of bread making are as delicious as the accounts of mass exterminations are harrowing.

AuschwitzA nonagenarian, Josef Weber, and a reclusive young woman, Sage Singer, meet in a bakery. On the surface they seem like improbable friends. For seventy years Weber has been hiding; hiding in full view of everyone. He is a model citizen; a much loved German teacher; an active youth worker; a lonely widower with only a dachshund for company. But unbeknown to his community, he is also a murderer; a former Nazi SS guard. Sage, on the other hand, is a young orphaned baker with a facial disfigurement, who works by night and sleeps by day, deliberately avoiding human contact, burdened by guilt. Is this meeting serendipitous? Or is there something more sinister behind it? After keeping his black secret all these years, what has prompted Josef to confess his past to Sage? And how will she react to his shocking revelation? Or to his request: he wants Sage to help him to die …?

Sage was brought up in a Jewish family (as Picoult herself was). Her grandmother, Minka, is a survivor of the Nazi atrocities and of cancer, who has never told her story … until now. And what a story it is – of depravity and courage, of brutality and love, of forgiveness and revenge, or murder and mercy. The first person account of Minka’s experiences of life in Nazi Germany, in Auschwitz, is told without sentimentality, and is all the more poignant and gripping for that.

In the past, Picoult has been given to overly analysing and revealing the psychology of her characters – in my view, anyway. In The Storyteller, however, she has left the experiences, the actions, the lives, to speak for themselves; a brilliant decision and one I’ve very much taken to heart. But she still manages to summarise profound truths in succinct dialogue:

 ’When a freedom is taken away from you, I suppose, you recognise it as a privilege, not a right.’

 ’I could never forgive the Schutzhaftlagerführer for killing my best friend … I mean I couldn’t – literally – because it is not my place to forgive him.’

 ’If you lived through it (the Holocaust), you already know there are no words that will ever come close to describing it. And if you didn’t, you will never understand.’

Minka, Sage’s grandmother, the storyteller, is at the core of this story. She lived ‘a remarkable life. She watched her nation fall to pieces; and even when she became collateral damage, she believed in the power of the human spirit. She gave when she had nothing; she fought when she could barely stand; she clung to tomorrow when she couldn’t find footing on the rock ledge of yesterday. She was a chameleon, slipping into the personae of a privileged young girl, a frightened teen, a dreamy novelist, a proud prisoner, an army wife, a mother hen. She became whomever she needed to be to survive, but she never let anyone else define her.’ She has also written a powerful fiction of her own.

Other threads – Josef’s story, Sage’s, Minka’s novel – are woven around and through this emotive core, creating at once an absorbing read, a sobering challenge, a powerful allegory, a warming family saga. And the whole leaves the reader asking: What is forgiveness? What is justice? What would I have done?

Highly recommended.

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Special offer!

STOP PRESS: Good news!

Saving SebastianYou might like to know that the Kindle version of Saving Sebastian is available for just 99p in their Spring Sale. I understand from my publisher that the sale is due to last until 21 April but I can’t guarantee it will.

For easy ordering, click on the link above or go to my Books page on this website.

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On a roll!

I’m buzzing!

Nine hours stuck on a train to London and back on Monday … could have been tedious. In fact it reaped rich rewards. On the way down it was four hours’ reading time. On the way back though, my mind went into overdrive and I got totally stuck into mapping out my next novel. Yep, the whole thing! The catering team plied me with drinks and food and smiles, my fellow passengers respected the rules of the Quiet Coach, and by 11.30pm my notebook was full.

Since then the old brain has been in sixth gear (or whatever it is that facilitates speed and efficiency), and a great big bit of me wants to escape to a remote island and just write. Life though, in all its humdrum-ness, can’t be shelved that easily, so I’m contenting myself with thinking and jotting whenever and wherever I can, empowered by that clear framework.

Rather than leave you high and dry though, I’m simply going to share some pearls gleaned from the latest Mslexia which appealed to the pedant in me. We all quote famous phrases at times, don’t we, but how often do we misquote, I wonder?

Which of these sayings do you think is accurate?

1. ‘Elementary, my dear Watson’ (Sherlock Holmes speaking)

2. ‘Bubble, bubble, toil and trouble’ (the 3 witches)

3. ‘Methinks the lady doth protest too much’ (Hamlet’s mother)

4. ‘Theirs but to do or die’ (The Light Brigade)

5. ‘A rose by any other name smells just as sweet’ (Juliet)

6. ‘Hell hath no fury like a woman scorned’ (Congreve)

7. ‘Please, sir, can I have some more?’ (Oliver)

How many did you rate as accurate? Below this picture of a beautiful tree currently blooming in our Japanese garden, are the results, so don’t look yet if you haven’t finished the exercise.

Spring blossomIn reality, every one of these is a misquote. Yes, really!  The correct versions are:

1. It doesn’t appear in any of Conan Doyle’s writings!

2. ‘Double, double, toil and trouble’

3. ‘The lady doth protest too much, methinks’

4. ‘Theirs but to do and die’

5. ‘That which we call a rose by any other name would smell as sweet’

6. ‘Heaven has no rage like love to hatred turned/ Nor hell a fury like a woman scorned’

7. ‘Please, sir, I want some more’

How did you fare?

 

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Moral obligation

Every now and then something crops up that challenges my thinking on ethical issues, and I’m reminded all over again that these questions are always evolving and it behoves me to stay on my toes and constantly revisit them.

This week it was a half day seminar on ‘Leaving your brain to science: Engaging with law and ethics’, organised by Edinburgh University. Now, although I’ve been immersed in the subject of organ donation for the last few years, as you know, I hadn’t explored giving the brain specifically, so I was intrigued to know what would emerge. I won’t bore you with the details, but I’d like to share something of the workshop that concluded the day.

It focused on moral obligation. We were given a collection of possible actions which might be of benefit to others and asked to rank them in order. At one end was ‘MORAL OBLIGATION’ which essentially meant the action is of recognised benefit to others with very little risk to oneself, making it something where there is a high level of obligation to carry it out (eg. on finding a fire one should summon the fire brigade). At the other end of the scale was ‘MORAL SUPEREROGATION’, meaning that the action might well be deemed praiseworthy, but it carries risks of such an order that there would be no obligation to do it (eg. rushing into a blazing building to rescue someone); it goes way beyond what might be considered a duty.

Rating moral obligationThe actions to be ranked were:

Live organ donation

Cadaveric organ donation

Egg donation

Sperm donation

Giving samples of tissue for research

Bone marrow donation

Donating the brain for research

Blood donation

How did YOU respond?Why don’t you try it yourself? Weigh up the potential benefits and costs and see where you feel a sense of duty/moral obligation takes YOU. You might well be surprised – as I was – at where ‘giving your brain after death‘ comes.

 

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Assisted dying wrapped in silk

Photo courtesy of Photolia

Image courtesy of Fotolia

Joanna is a young woman in constant pain. She’s tetraplegic following a car accident, totally dependent on others for her every need 24 hours of every day, and facing the prospect of another 20-30 years in a similar state. A bright nimble brain in a paralysed body. Trapped. She isn’t physically able to end her own life; the law doesn’t allow her to be killed by others. No wonder she’s depressed.

But so too, is her mother Sarah, trapped with her. She asserts that her daughter said on many occasions, ‘If you loved me, you’d kill me,’ although, as the prosecuting lawyer reminded her, ‘We only have your word for that.’ And yes, Sarah is in court because she has admitted to killing Jo with a lethal cocktail of drugs.

On the surface it looks like a straightforward battle about the morality of helping someone to die. It’s not until Sarah is under questioning that her own defence lawyer senses something is wrong with her testimony. Who is she protecting? What did actually happen in that bedroom?

That was the essence of the story in the courtroom drama, Silk, on BBC1 on Monday 10 March. It’s a programme I enjoy watching normally – although I confess the private shenanigans between the characters often make me cringe. When the topics creep into my areas of particular interest I’m doubly hooked. And this particular storyline was particularly timely because the papers at the weekend were predicting significant developments in the legalisation of assisted suicide. In the next airing of the Assisted Dying Bill, due in a few months, Conservative and Liberal Democrat MPs and peers – including Coalition ministers – will be given a free vote on the Bill that would enable terminally ill patients to be helped to die. And although neither the prime minister nor his deputy are in favour of a change in the law, the Government has now made it clear that it would not stand in the way of such a Bill where strict safeguards are in place. (Incidentally Joanna wouldn’t qualify as she’s not terminally ill, though she is in constant pain.)

Of course, opposition remains. Doctors, disability campaigners and church leaders are still cautioning that a relaxation in the law could put vulnerable people at risk, and damage the doctor-patient relationship. Furthermore, it’s argued, this is a dangerous time to consider a relaxation because of ‘an atmosphere of growing hostility towards disabled and elderly people‘ in the wake of the recession.

Is there ever a good time? Which way would you vote? Given your own circumstances? Or if you were Sarah, experiencing at first hand the impact of extreme disability of your beloved daughter, and on the rest of the family? Or if you were Joanna herself, facing unremitting pain and indignity for the rest of your life?

At the same time as this play was airing, I was reading Debbie Purdy‘s book, It’s Not Because I Want To Die. You’ll remember she’s the doughty fighter with MS who fought through the courts for the right of her husband to help her die at a time of her choosing, without fear of prosecution. And as the title of her book suggests, she contends that the reassurance that he would not be prosecuted means that she can prolong her life with impunity – prolong not shorten, please note. But, wait a minute … the new Bill wouldn’t help her either because she’s not terminally ill. Hmmm. So who exactly needs new legislation?

I’m with a certain AMS Hutton-Wilson writing in the letter pages of the Telegraph on 11 March: ‘The people most in need of a change in the law are not the terminally ill but those who, although still mentally capable of making an informed judgment and expressing it clearly, have had their quality of life profoundly compromised by conditions leading to an inability to talk, swallow or breathe without difficulty.’

What would you do about them?

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A tribute to my fellow authors

6 March was World Book Day so it’s fitting that this week I should share my admiration of great authors. The sheer imagination behind their work, the persistence and diligence that brings their hard work to fruition, their impressive ability to keep me glued to their books.

To celebrate, I temporarily called a halt on those dreaded ‘anorexia books’, turning instead to some real page turners to raise my spirits and put me in the mood for some serious plotting of my own. Ah yes, and I dug out some lovely merino wool I’ve been saving for the right occasion. Mmmmm. Bliss. Close the door; shut out the world.

Books and knittingFirst up was Diane Chamberlain’s, The Lost Daughter which tells the story of a woman who, when she was sixteen, helped in a kidnap which went disastrously wrong. The girl goes on to live an exemplary adult life, but always the shadow of her past lurks menacingly above her, and when her conscience finally gets the better of her, she must decide whether to keep quiet – and risk a man’s life; or to tell all – and risk destroying her own family. This is more than a tense will-she won’t-she kind of book, Chamberlain brings her customary psychological insight and social awareness to bear in creating believable characters who are dealing with extraordinary situations. What’s more, it has a happier ending than I was steeling myself for. A bonus!

Next came Tess Gerritsen’s Bloodstream. Just in the first few chapters we have the massacre of a family, a mysterious shooting in the woods, the discovery of a human femur, a man having an epileptic fit, a schoolboy running amok killing his teacher, a doctor with a haunted past, a policeman with a drunken wife, and skullduggery in the hospital labs. Phew! What links all these people? Holding all these disparate strands together is a masterly feat in itself. ‘Last week, Satan arrived in the buccolic town of Tranquillity, Maine …’ writes a local reporter. Guaranteed to stir up fear and trouble, you might think. But violence of a particularly vicious nature has erupted in this town, loving children are turning into ugly strangers – and history is repeating itself. Decades ago, other young people also turned into killers. Why? The new doctor in Tranquillity, Dr Claire Elliot, is in a race against time to uncover the reason before anyone else dies, and before she loses her only son, or her own life.

The knitting growsDeborah Lawrenson’s The Lantern was another intriguing read with it’s own hauntings. (Indeed, curiously enough, there were several common elements between it and Bloodstream.) Unsophisticated Eve falls in love with an older man, Dom, and their whirlwind romance leads them to a rundown but beautiful house in  Province. But as summer turns to autumn the house begins to reveal macabre secrets and troubling mysteries, and Dom grows increasingly distant. What exactly did happen to his beautiful first wife? – shades of Daphne du Maurier here. And what is this voluptuous scent that pervades the house? – vanilla with rose and the heart of ripe melons, held up by something sterner, a leather maybe, with a hint of wood smoke. Whose bones have been unearthed beneath the old swimming pool? Who is leaving a lighted lantern in the exact spot where lovers trysted in days of yore? And what is behind the mysterious hallucinations?

The jacket so farWhat a treat to be totally swallowed up in stories with complex plots that interweave time and place and people. Books that needed my full concentration to unravel and truly savour. The knitting grew at a terrific rate as you can see! And ideas for my own next novel flooded in – indeed so quickly that I was even forced to commit them to the computer during my reading sessions. I am rejuvenated and invigorated. And immensely grateful.

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Appearances – deceptive or otherwise

Yes, indeedy! Appearances (in both senses) can be deceptive in more ways than one.

One of the most enjoyable events I do is visiting bookgroups. Usually I sit in on their discussion of my book, and answer any questions that they direct at me about it. It’s always a great thrill to hear people talking about my characters as if they know them, reflecting on the people they like or dislike, the bits that resonated for them, the aspects that were less convincing. (Nobody’s totally assassinated my writing so far, which helps, of course!) It’s usually all very relaxed, with a glass of wine along the way, the odd crisp/nut/biscuit, and I have leisure to learn from their comments about what works and what doesn’t. Incidentally, the negative comments are often more powerful and instructive for me than the compliments.

However, last Thursday’s ‘author appearance’ was rather different. The setting, the welcome, the people, were all deluxe, but from the outset the questions came thick and fast – in my direction! My career, my subjects, my choices, my opinions, were all under the microscope. The assembled ladies had a wealth of knowledge and experience between them – both personal and professional; they were most encouraging and engaged and generous, but I was most definitely in the big black chair! They’d all read Over My Dead Body for this session but that merely served as a reference point; they were interested in the why and the how of writing about medical ethical issues – forcing me to  think fast. Why did I go down the fiction route after years in academia? Why did I write a particular novel at a particular time? What prompted me to write about that specific topic? Where do ideas come from? Why did such and such a character have to die? How do I cope with the emotional drain of writing such books? How would I tackle the issue of too few organ donors? It was all very stimulating and great fun, and very good for me to be put on the spot – I can prepare for a discussion on the book; I can’t really prepare for so many challenges out of left field. 

BookgroupI salute you, ladies! You were wonderful. This picture (apologies for the quality – I didn’t like to bring the big camera!) captures the essential qualities of a super session: intelligent articulate people, a stimulating topic, peaceful ambience, excellent lubrication. My only regret … I can’t join all the bookclubs I visit!

 

 

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Novel number 9?

Several people have independently asked me this week where I’m at with novel number 9. Well, the short answer is: I’m still researching the topic – part time at that, because I mustn’t be deflected too far from the necessary task of promoting Over my Dead Body at the moment.

Truth is, most of this background work isn’t exciting enough to anyone else to report it. Goodness, some of it is even tedious for me, as I confessed last November! However, I like to focus on the positive and this week I discovered another gem that has given me new impetus.

Books about anorexiaRemember this shelf of novels I had to plough through? Well, one of them: Wintergirls by Laurie Halse Anderson, has restored my faith in authors who write about eating disorders.

The storyline is pretty much the same as all the others. Lia is 18. She’s anorexic. She’s watched her parents split up. She has an ambivalent relationship with her stepmother. She constantly fights the urge to eat. She has a grossly distorted body image. Yawn, yawn. All horribly familiar.

But in Lia’s case there’s an added dimension: she’s consumed by guilt. Not because she’s stick thin and disobeying all the injunctions of her psychiatrist – no. Rather because, before she died, her ex-best friend and fellow anorexic, Cassie, tried 33 times to speak to her, increasing desperation screaming through the messages she left. But Lia refused to answer. And now Cassie has been found dead in a sleazy motel room. Alone.

So why did this book appeal? Lia’s teenage voice is authentic and engaging without the all-too-common patronising undertones. Her mental troubles are captured sensitively. She’s a haunted soul, and Anderson has managed to convey the devastating effect of such a situation without moralising or lecturing. All making us want to know why Lia ignored the pleas, how Cassie died, whether Lia will survive the trauma.

Also the writing is in a different league.

‘She’s still learning how to pick her way through the bombed-out countryside that lies between her stepmess and the mythological Wife Number One.’

‘I go up two flights and tiptoe across the polished floor of her bedroom, sloooooowly turn the doorknob, and open her bathroom door a crack. A breath of steam trickles out, filled with the sobs of a grown woman breaking into girl-sized pieces. I close the door.’

Furthermore, the author employs some simple but effective techniques which appealed to me. Scratching out the narrator’s thoughts shrieks at us/lets us know what the ‘nasty voices‘ in her head are telling her /Lia really thinks, or would say if she dared. Repetition of the haunting reality of Cassie’s death keeps Lia’s preoccupation centre stage.

… she called.

thirty three times.

you didn’t answer.

body found in motel room, alone.

you killed her.

I was beginning to lose the will to live/wonder if I’d made the right choice of subject for the next book. Wintergirls has made me believe in the possibility again. Onwards and upwards!

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Perfect people

Imagine if you’d lost a child to a rare genetic disorder at the age of four … You know that neither your sanity nor your marriage could survive watching another one die … Then along comes a charismatic doctor who offers you … not only eradication of the rogue gene you both carry, but subtle improvements on nature too … if you choose them.

What would you do? (I went part way down this path in researching for my own novel, Saving Sebastian – a ‘designer baby’ with a difference; so of course I’m instantly drawn to the question behind Peter James‘ novel, Perfect People.)

You know enough to realise that tampering with the germline is serious stuff: there’s no going back. You’d be altering something fundamental which will be carried on in future generations. But then … where’s the harm in choosing a child who won’t need much sleep when he grows up? Or who won’t put on too much weight? Or who’s got excellent hand-eye co-ordination? Why not? Future progeny would be grateful to inherit such characteristics, wouldn’t they? You’ll be sensible, of course you will; you won’t be seduced by the idea of genius, or film-star looks, or Olympic medal sporting prowess. You only want what’s best for your child. Like every other normal parent.

Perfect PeopleIn Perfect People,  Dr Leo Detorre promises all this. More than that, he persuades couples that naturally-formed babies will, in 40 years time, have become the ‘genetic underclass’. They owe it to their child to give him/her the advantages of genetic enhancement. Anything less would be a dereliction of their parental responsibility.

Swedish scientist, Dr John Klaesson, and his British wife, Naomi, have every reason to want to eliminate the risk of inherited diseases.  Their little boy Halley died from the consequences of a fatal defect carried by them both. They know they can’t cope with a repeat of that. But they have a one in four risk. Dr Detorre is their only hope.

He maps both parents’ genomes; he lists a shocking multiplicity of defects they are susceptible to. He promises to eradicate all the risks. For an eye-watering sum of money. They’re desperate; prepared to borrow way beyond their means, in order to have one healthy child. A boy. And they’re restrained: Dr Detorre offers them far more than they’re prepared to accept. They simply want a child free from disease with a little advantage or two, and they do a lot of heart searching before allowing even that little enhancement.

Once they’ve set the ball in motion, everything feels surreal. They’re flown to a floating offshore clinic way out in the ocean, isolated from all human contact ‘to avoid any contamination’ of any kind. For tests. For injections. For the conception itself.

But afterwards, back at home, in the humdrum reality of everyday normality, everything starts to assume a quite different perspective. If he’s so clever, why did Dr Detorre get the gender wrong? How come he introduced more than one embryo? – things any ordinary embryologist or fertility specialist knows how to do routinely.

Misgivings ratchet up to a whole new level when sinister things start to happen. A bomb destroys the brain behind the scientific revolution. The Klaesson secret gets out; the world’s media react. The twins start to show weird behaviours, precocious abilities, and worrying physical and psychological anomalies.

Other families treated by Dr Detorre are massacred horribly. A sect called The Disciples of the Third Millenium declare themselves determined to stamp out this work of Satan. And one of the Disciples is stalking the Klaessons.

Tested almost beyond endurance by the twins’ behaviour, John and Naomi are nevertheless devastated when the youngsters vanish, apparently willingly accompanying a murderer. And in the search for their children, they gradually uncover the truth behind Dr Detorre’s work and the appalling consequences for their family.

OK, there are some rather unbelievable features to this sci-fi thriller and some irritating linguistic flaws, but I found it was a real page turner of a book.  And a cautionary tale to boot. Be careful what you wish for! The author says there were times when he thought he’d tackled too complex a topic this time. He did; but for me he pulled it off. I didn’t actually care that the genetic disease was fictional, or that the parents were naive, or the outcome predictable. There’s a price to be paid for sticking too closely to the facts, and I think James made some choices for the sake of dramatic tension that paid off. It’s not a treatise about genetic engineering; it’s a novel! Enjoy!

 

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‘It is yesterday that makes tomorrow sad’

No two author appearances are the same: the venues, the audiences, the questions, the reactions, vary greatly. But of course, for the author, the subject matter is pretty constant when you’re doing a post-publication circuit. Me speakingI’m in the midst of this at the moment for Over my Dead Body so it made a nice change on Monday to sit in the body of the kirk listening to somebody else; watching and learning from their performances.

Sally Magnusson was the star attraction of a conference at the Dementia Centre in Stirling University, talking about her new book: Where Memories Go: Why Dementia Changes Everything. It chronicles her mother’s journey into dementia – ‘a vicious brain affliction that hijacks memory, personality and functional capacity’. The blurb summarises it as ‘both deeply personal and a challenging call to arms. Faced with one of the greatest social, medical, economic and moral challenges of our times, society must urgently reconsider how we look after the most fragile of our citizens.’

Sally herself has been a familiar face to us in Scotland where she regularly presents for the BBC; and of course, her father, Magnus was a household name before her. She comes across as someone I’d like to meet, so I went with high hopes … and a degree of fellow-feeling given that my own mother developed vascular dementia in the last year of her life.

Reproduced with kind permission from the DSDC and Tony Marsh, photographer

Reproduced with kind permission from the DSDC and Tony Marsh, photographer

I was not disappointed. Her experience, as well as that of another excellent speaker, (Katharyn Barnett, a diamond analyst, telling her similar story) echoed mine in several dimensions. Both women lamented the lack of understanding, knowledge and empathy, the need for ‘big, bold, top-down culture change‘. Both appealed for better resources and support. Amen to that.

Sally’s book itself? Beautifully written, moving and very readable. It doesn’t shirk the reality, the frightening, sobering facts about this horrible thieving illness which is now so much more prevalent in our aging society. But it’s softened and made more accessible and gripping by the personal elements. The focus throughout is her beloved mother, to whom she’s speaking, whom she wants to remember in vivid detail.

‘I tap late into the night, eager to round up your slippery self before it slides into yet another shape. It’s as if I have to catch you now, as if by the time I see you again tomorrow it may all have changed, as indeed there is every chance it will. If I can only pin you by the bullet point, secure you with headings, trap you in words, corral you within a list, then perhaps I can hold you beside me here for ever …’

In the telling, the Magnusson family come alive and they feel very real. In spite of her glamorous public persona, Sally is a ‘normal’ daughter, niece, mother, aunt, to her many relatives, rolling up her sleeves and getting stuck in with ordinary everyday things. Driving the elderly as well as the young around. Escorting, comforting, entertaining. Being irritable, losing her temper, regretting, lamenting. As she says, she too knows ‘the confusion in a middle-aged soul’, being ‘pinched so hard between two generations that we have trouble locating an identity of our own.’

Her father, Magnus, comes across as a rather detached figure, retreating to his study and his writing, leaving the running of a large household to the womenfolk. Mother, Mamie, once a highly respected journalist in her own right, is portrayed as a lively, loving, wise, colourful character at the very centre of the family. Sally recalls her ‘falling out of a punt into the River Cherwell, tumbling down a Glasgow manhole and half drowning during the vigorous self-cleaning cycle of an automatic French toilet,’ but always bobbing up again with insouciant charm and wit. Now though, she’s causing a different kind of reaction, a vague unease segueing into horrified realisation: losing her sense of curiosity, wandering around a guesthouse half clad, challenging two huge ‘gansta types’ on the London underground, needling her twin sister, forgetting words.

The diagnosis comes harshly and there are no magic bullets, search as Sally might among the world’s experts. The family regroup; the Mamie-sitting begins. In spite of their busy, high profile jobs, the Magnussons resolve to look after Mamie at home. They are articulate, energetic, insightful, relatively wealthy – they have the wherewithal to marshall support and an army of assistants. Not everyone can. But even with their resources the toll on Sally and her sisters is heavy – the constant anxiety, chaos, extreme fatigue, frayed nerves. Their own families suffer.

On the other hand, they see for themselves the benefits of familiar surroundings, constant family presence, the therapeutic value of the music which has been so central to Mamie all her life. They confront head-on the reality of decision making at the end of life – do we let her slip away or do we treat? – as a family: unencumbered by the constraints and pressures of officialdom, with their mother safe in her and their own world.

‘What mattered was that life still burned within you, fierce and lovely, and we could not let you go.’ However ‘… we know it could be different, perhaps even should be different, next time. Drug development is out of kilter. We have medicine to stop lungs filling up but not the brain eroding. We have drugs and vaccines to counteract or slow down almost ever disease that nature has organised to bring life to a close, but none to mend the mind. So thousands of old people lie in thousands of beds,waiting for a death we do our best to deny them for as long as possible. Better, perhaps, to face thinking about a time when the treatment might be allowed to stop.’

Over time they revisit their decisions as they see the life they have revived her for sliding into ever more debilitating levels: the ‘scorching emptiness’ in her eyes, the dislocation, the sadness, the fear, the outbursts of rage, the ‘tyrannical’ attention seeking, the inconsolable weeping, the hostility, the violence, the ranting and raving, the unearthly keening, the hallucinations, the ‘nightmare your life became’. But Sally finds the most harrowing moments are when her mother manages to rise above the fog sufficiently to articulate her feelings: utterly lost; hating her dependence on others. That was the worst stage for me too, when my mother was aware of her predicament.

Difficult as the behaviours are, the Magnusson sisters face other stark challenges.

‘What is threatening to defeat us daughters is not so much your behaviour as our emotions. Others, namely the stalwart women who look after you as a part-time job, seem often to manage you better than we do. We have kept a major role in what is now a 24-hour rota not just because the financial reserves are finite but because it is clear you want us. Yet each of us is haunted by a mounting sense of failure … Perhaps, we three sisters tell ourselves, we need to hand over the reins to people who are not so emotionally involved, who don’t find tears flooding into their eyes every time you lash out or look lost. Perhaps we must contrive to become breezy visitors rather than ragged carers.’

Nevertheless the occasional sparks of recognition, the lulls in the battle when they sang together, the rare tender touches, kept them persevering at home to the end, shored up by the team of professionals who tended to their mother’s physical needs. 

In the end Sally concludes, on a personal level, through this painful journey with her mother, she has discovered the true meaning of love – a love which she wants her own five children to understand. And on a more global level, she believes, ‘A nation discovers its truest dignity when it cherishes the dignity of those from whom it has not heard for a very long time. That much I have learned, beloved mother, from your living and your dying.’

The story isn’t new. So many thousands of other daughters have travelled a similar path, but perhaps the powers-that-be will listen to an attractive, articulate celebrity who has captured the anguish and the need so eloquently.

One final thought: Analysis of Iris Murdoch‘s writing reveals a change – simplified syntax and impoverished vocabulary – when Alzheimer’s started to destroy the connections in her brain. Mamie Magnusson simply stopped writing. I must listen well to critique on my own scribbling as the years roll on! Is this dread illness even now lurking under the lamp post outside my window?

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