Hazel McHaffie


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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Olympic tasks

Well, the Olympic torch has certainly caused a stir throughout Scotland. It passed through our town on Thursday and as I waited in glorious sunshine (yes, really!), one amongst hundreds, I found myself contemplating its symbolism.crowds cheering runnersNot only is the flame travelling through the country, honouring those who have made a significant contribution to their community or nation in some way, drawing crowds wherever it goes, but other disciplines – businesses, churches, teachers – have capitalised on the occasion.

Wayside pulpits quote: ‘Your word is a lamp to my feet and a light for my path.’ Ministers have told parables of the importance of training, striving for perfection, persevering, of goals and objectives, prizes and medals. School teachers have taught their students similar lessons for life, bringing them out onto the streets to witness this historical spectacle.

My mind though has also been drawing parallels with writing. The flame carrier (author) is the focus of attention, but just look at the team running alongside (the editor, the publisher, the bookseller.) They display stamina, endurance and athleticism too, often with precious little recognition. How many cheered them? How many even noticed them?supporting castEven the torch bearer’s moment in the limelight is short lived (books rarely last long on the bestselling list).torchbearerThe excitement and encouragement of the public (readers) are both invigorating and confirming for the principal players. The atmosphere of friendly support amongst the police (critics), waving and chatting to the crowds …crowd supportand the energetic endorsement from the sponsors (reviewers) …sponsorsdemonstrates that they too are human, applauding and enjoying the whole enterprise, caught up in the prevailing enthusiasm.

And the success or otherwise of the total process (publication and distribution) depends on careful pacing and precise timing. If the public aren’t well informed (marketing) they won’t know when or where the torch is coming to their area. There will be no cheering crowds (buyers).

sponsorsMy own reaction to this Olympic phenomenon has surprised me. The history, the pageantry, the atmosphere, have been unexpectedly stirring and moving. And for me a particularly poignant moment was when a lady who received a new kidney sixteen years ago, carried the torch up onto Edinburgh Castle’s esplanade on Wednesday evening and lit the Olympic cauldron. Lesley Forrest, MBE, who has won a number of medals in both the British and World Transplant Games, spoke simply but powerfully of the remarkable gift of life she’d been given, and of how she is committed to making every day count – particularly timely and relevant for me at the moment with my current novel being about organ donation. I only hope that when it comes out, my message too will echo her words: this is a special gift; it can transform lives. And that more people sign up.

Here endeth the lesson!

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