Hazel McHaffie

Lisa Genova

Doorstoppers

I’ve been thinking quite a bit about size lately. Not as in personal dimensions – although that’s obviously been a feature of my recent writing; no, I’m referring to books. Doorstoppers in particular.

Hilary Mantel booksTake Hilary Mantel‘s huge tomes for example – excepting her memoir Giving up the Ghost which I sped through in a couple of sittings. Wolf Hall and A Place of Greater Safety have been staring at me reproachfully from my shelves for ages, but I can’t quite bring myself to set aside a large enough block of time to plough through them. I’m not one of these razor sharp people who can have several books on the go at any one time and so afford to have a massive volume on the bedside table to dip into over many months whilst steaming through an alternative pile of quick-reads. I lose track of characters and story-lines far too easily. And books which impinge directly on my own area of expertise/current writing tend always to take precedence.

Ken Follett booksKen Follett‘s sprawling tales – each of these is two inches thick! – are another example from my library. I loved his The Third Twin which I read aeons ago, so I bought these three on the strength of that recommendation. They’ve remained unopened to date. Same reasons.

Likewise Penny Vincenzi and … but I won’t bore you with a list.

An exception though, has been Matthew Thomas‘ debut novel, We Are Not Ourselves. (An inch and a half thick, if you’re interested.) For purely pragmatic reasons it rose instantly to the top of my pile: it’s in my ball park and a friend gave it to me for that reason; but I feel a degree of urgency to read and return it because I know her husband is next in line for it. So I’ve persevered doggedly to the bitter end and not allowed myself to be deflected.

We Are Not OurselvesIt’s a sprawling tale about the Leary family spanning sixty years, tracking a college professor’s descent into Alzheimer’s and the effect on his wife and only son. It even has a chapter where the son is rehearsing for a debate on euthanasia! So yes indeedy, my kind of subject. But really! Does any fiction merit 620 pages of tiny text? It took Thomas ten years to write (in a one bedroom apartment with young twins); my own (impertinent?) judgement is he’d have been well advised to edit it severely and give the story more zing and pace. Comparisons can be odious but Lisa Genova‘s Still Alice accomplishes more in far less time and space.

It’s the massive annual Christian Aid Book Sale in George Street this month, so I’ve decided two things: to bequeath all my unread Follett novels to the cause (along with a boxful of others); and to resolutely set my face against buying more books until I’ve cleared some from my shelves. Snag is, most of the ones still jostling for attention I’m sure I shall love too much to part with even once I’ve read them.

 

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Cursed inheritance

As I promised last week, good news this time!

Eight or nine years ago I chose Motor Neurone Disease for the degenerative condition journalist Adam O’Neill is battling with in my novel, Right to Die; Right to Diea disease that will strike right at the heart of his being and his aspirations. So I was fascinated to find Lisa Genova chose Huntington’s Disease for her tough Boston cop Joe O’Brien in Inside the O’Briens, a disease that stops his career dead in its tracks and forces him to face the horrors of genetic inheritance.

Both MND and HD are frightening, crippling, fatal conditions that rob the person of control and dignity. Getting inside the mind and body of either an Adam or a Joe is very scary stuff. So, having been there myself, I was extra curious to see how someone else tackled the ethical minefields and personal challenges associated with such a scenario; especially someone with Genova’s credentials.

This time she has inserted occasional tracts of medical explanation about the condition into her novel to inform the reader, positioning herself as a scientist; but for me her real strength lies in her ability to describe the illness from the inside. She puts the humanity into the science, compassion into the clinical facts. The insidious onset before policeman Joe even suspects the truth. The sudden weird and inexplicable bursts of anger. An inability to process instructions. Finding it impossible to keep legs and feet still on parade … in police exercises … in a restaurant. And then, once he’s diagnosed, the inexorable progression. The involuntary indiscriminate throws – punches, food, cutting words – that label him as drunk, deranged or dangerous to passers by. The red rages that cause his wife Rosie’s black eyes, terrible destruction in the walls of the family home. The fear that won’t let him ever hold his grandson. The depression that makes him constantly check his gun is still loaded and primed.

We peer into his past when Joe recalls his mother’s antsy wild black eyes as she lay in a mental institution for years; condemned to be known as an incurable drunk. The questions hitting him now nearly forty years later. How could she have remained an alcoholic in the hospital all those years? Why had his father stopped taking Joe and his sister to visit her? Why had his strong dad wept like a baby? What lessons did she actually teach him?

The author powerfully captures the brutal reality through the eyes of the rest of the family too:

Inside the O'Briens‘Huntington’s isn’t the absence of moving, thinking, and feeling. This disease is not a transcendental state of bliss. It’s a complete freak show – ugly, constant, unproductive movements, uncontrollable rage, unpredictable paranoia, obsessive thinking.’

We see the dawning terror in his wife’s eyes. Her silences. Her withdrawals. Her desperate stroking of the crucifix round her neck, the beads of her rosary. Her binning of the symbols of her ingrained Catholic faith.

Then there’s the terrible implications for their four beloved offspring. Vegan yoga teacher, Katie, living life in ‘peace, health and harmony’. Ballerina Meghan, limbs and body and mind all supple, beautiful, desirable. Firefighter JJ, taking his health and fitness for granted, using it to save others; preparing for imminent parenthood with his wife Colleen. Rebel Patrick, sewing his wild oats liberally, experimenting with life. Each one of them carrying a fifty percent chance of harbouring this cursed disease. Nothing can change that fact. Nothing can halt, slow or reverse this terrible thing. Joe, their father, is powerless to protect them. Indeed it was he, their supposed protector, who handed on the poisoned chalice in the first place. And now he must stand on the sidelines and watch them all battling with the impact of their cruel inheritance. Only they individually can decide whether to take the test, if they want to know the truth lurking unseen in their own DNA. JJ and Colleen may not even choose on behalf of their baby son.

How should Joe deal with his burdens? Is there a way out? Should he take it? How can he best support his children? Should the youngsters go for testing? What are the implications if they do/don’t? Would I want to know?

I love books that are at once a gripping read and challenge me to think deeply – especially in the field of medical ethics. And even though I’ve been into these questions already myself as an author, I thought this book was brilliant and awarded it five stars. Beautifully written, compassionate, perceptive, engrossing, provocative. Genova at the top of her game again. Seems I prefer her as neuroscientist-turned-novelist rather than simply novelist. That could well be something to do with my own position on the spectrum; nevertheless the experience of reading Love Anthony and Inside the O’Briens one after the other, has taught me something of value for my writing too.

So, Genova has already tackled Alzheimer’s, Left Neglect, autism and Huntington’s. What next? MND, she says – or as she calls it ALS. Ahah! I await that novel with bated breath!

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Neuroscientist or novelist

You’ve probably heard of Lisa Genova. She’s a neuroscientist by background but now also a fantastic novelist.

Her debut novel, Still Alice a fascinating insight into the mind of a young professor with Alzheimer’s – became a sensation and was made into an Academy Award-winning film in 2014. I gave it a four star rating when I reviewed it on my blog and when I chose it for discussion at a Readers’ Day. A brilliant and perceptive book.

Less well known is Genova’s second book, Left Neglected, which I also reviewed on this blog some time ago while I was ill. I loved this one too and it resonated with my own experiences of identity and disability. It’s insightful and lyrical and thought-provoking.

Genova novelsSo I just had to buy her other novels: Love Anthony and Inside the O’Briens. I’ve now read both of them but come to different conclusions about them. This week I want to talk about Love Anthony.

It tells the story of two women: Olivia and Beth. Both have disintegrating family lives; both are left without husbands; both adopt new careers.

Olivia Donatelli’s dreams are shattered when her beautiful little boy Anthony fails to develop normally, fails to speak, fails to engage with her emotionally. Aged 3 he is diagnosed with autism. Aged 8 he is dead. The strain and toll wreck her marriage and deplete all her reserves and resources. She buries herself in remote Nantucket Island until, through her photography, she finds new direction and new answers.

Beth Ellis is the mother of three girls who has just discovered her husband’s infidelity. Struggling to find a new identity she turns to creative writing and begins to write a first person story about a boy with autism. Sitting in the same seat in the same library she feels she is somehow channelling a haunting voice.

Love AnthonyOh dear. I’m afraid this book didn’t live up to my expectations. Neither the writing nor the plot nor the characters are a patch on Still Alice. It doesn’t do for autism what Alice did for Alzheimer’s. And I really didn’t like or believe in the story Beth wrote – the narrative voice became tedious and improbable. So I was startled to read Genova’s own declaration: ‘With Still Alice and Left Neglected, I was a neuroscientist writing a novel. With Love Anthony, I became a novelist.’ Hmmm, is there a cautionary tale there for me?

Tune in next week for much better news about the other one, Inside the O’Briens.

 

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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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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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Heads above the parapet

Two things to report this week: both related to author appearances.

The first was a salutary lesson to me. I discovered quite by chance, and after the event, that a reporter had slipped incognito into one of the sessions I was doing and published a lengthy report of it! Phew. Over my Dead BodyHad I known, I’d have been super-conscious of what I was saying, but I had no idea. I thought I was talking unscripted to a lovely group of book lovers in a public library on a beautiful sunny Wednesday evening about my latest novel and the issues it raises. They all seemed fully engaged with what I was talking about, and asked some very relevant questions. I simply responded to these and their non-verbal cues.

So it was a bit of a shock to find a pretty full account of what we’d talked about in The Edinburgh Reporter! A few comments have been given an emphasis or slant that I certainly didn’t intend, and hope I didn’t say quite like that, but hey, I’m impressed that the reporter gave our quite low key event so much space.

Then, this past weekend, I was one of four authors invited to take part in a Readers’ Day in North Ayrshire. We were each asked to select two books – one of our own and one other – to discuss in workshops. My choice was Still Alice by Lisa Genova, a brilliant novel about Alice Howland, a Harvard Professor of Neurolinguistics, who gradually loses her sense of self through Early Onset Alzheimer’s Disease when she’s in her late 40s.

My choice of bookWhy did I chose this? Because it’s a brilliant book which takes you inside the skin of this character and her condition. Because I work with people with dementia, so it’s a topic near to my heart. Because I’ve written on the subject myself (Remember Remember). Because I love a book that challenges me to think about important issues. Because I personally identify in many ways with both the author and her principal character, Alice. Enough reasons for my choice, huh?

By chance, dementia has been making headline news again this week too, so I felt it was doubly appropriate … not that the issue is going to go away any day soon, of course.

As we get better and better at curing illnesses, and health and life-expectancy improve, so the number of people contracting this particular set of diseases which affect the brain, memory and behaviour, grows. However, it’s a sobering fact that global spending in this area is five times below the level allocated to the field of cancer. It’s also a fact that many people now fear getting dementia more than they dread a diagnosis of cancer.

You’ll probably remember that last December, the G8 summit advocated a concerted global attempt to combat this growing scourge – in a nutshell, more spending and better coordination in order to find effective treatments. Common sense really. They drew attention to the horrific statistics at the time: approximately 44 million people currently suffering from it; a new case every four seconds; a global cost of 440 billion euros. A predicted increase to 135 million by 2050 (according to The Alzheimer’s Disease International Federation); numbers doubling every two decades (according to The World Health Organisation). The G8 pledged to find a cure by 2025. Bring it on!

Sands of timeAnd this week we’ve heard more of the same here in the UK: the government’s hopes, plans and deadlines for action – increasing investment in research, developing new drugs, giving early access to medication and innovative new treatments, world-wide pooling of resources.

Wouldn’t it be brilliant if people in their forties today – the prime minister, my children, their generation – loved members of families, with bright todays, and promising futures … people like Alice – could be spared the horrors of losing touch with themselves and their memories? Maybe books like Still Alice ought to be compulsory reading for anyone in a position to do something to further this aim; to remind them of the human impact of dementia. Hey, maybe we need readers’ workshops at an altogether higher level!

 

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Jinx or dementia?

Would whoever has put a hex on our household please, please, remove it. I don’t know what I’ve done to offend you, but I promise I won’t do it again.

The evidence? Within the space of nine days

1. answerphone dies
2. freezer ends a long and productive life (while still completely full, of course)
3. large cherry tree comes down in gales just feet from our house
4. phone (landline) dies. First engineer sent to site on Day 2, foreign to neighbourhood, can’t track lines, defers problem.
5. battery for car-key malfunctions once car full of assorted valuables parked in city
6. internet connection lost for no reason known to man …
To quote the wisdom of ages: ‘all is vanity and vexation of spirit.’

Conclusion? Must be a jinx. Or …

Still AliceI read a terrific book in the midst of the chaos listed above. Still Alice by Lisa Genova. Alice has dementia; it’s her story. I’m glad my own novel on the subject is written or I’d be tempted not to write it, because Still Alice fits almost all my own criteria. I entered her world … I found myself testing my memory with mental lists … I could almost believe the phone, the tree, the car-key, were a figment of my dementing mind … what a relief to find all those annoying things really had happened.

Well, they do say, truth is stranger than fiction. Speaking of which, I must get down to writing it. Much catching up to do after a frustratingly hamstrung week.

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