Right to Die

by Hazel McHaffie

  HAZEL MCHAFFIE trained as a nurse and midwife, gained a PhD in Social Sciences, and became a Research Fellow in Medical Ethics. Her success in the field has led to her being invited to lecture around the world. She has published almost a hundred articles and books in the academic world, the last of which, Crucial Decisions at the Beginning of Life, won the British Medical Association Book of the Year Award for 2002, one of the most prestigious awards in medical publishing. Her move into fiction has represented a culmination of her far-reaching medical knowledge and her literary talent.

  Praise for Hazel McHaffie’s medical novels

  There are very few novels which deal with the issues of contemporary medical ethics in the lively and intensely readable way which Hazel McHaffie’s books do. She uses her undoubted skill as a storyteller to weave tales of moral quandary, showing us with subtlety and sympathy how we might tackle some of the ethical issues which modern medicine has thrown up. She has demonstrated that hard cases make good reading. ALEXANDER MCCALL SMITH

  McHaffie accomplishes something of great value for the reader – something deep within the ethical and far away from the bio-ethical. She exposes the potential for authenticity within intimate human relationships. THE LANCET

  From Tolstoy to Cronin, writers have raided medicine in search of the raw material of literature. How appropriate that Hazel McHaffie should be repaying the compliment by using fiction to help us grapple with the ethical dilemmas so often and so effortlessly conjured up by modern medicine. GEOFF WATTS, WRITER, JOURNALIST AND BBC PRESENTER ON SCIENTIFIC AND MEDICAL TOPICS

  McHaffie’s books are skillfully written to bring out the complex ethical issues we as doctors, nurses, patients, or relatives, may face in dealing with difficult issues… These books are a welcome development of what has been called the narrative turn in medical ethics. THE BRITISH MEDICAL JOURNAL

  Hazel McHaffie illuminates the novel moral complexities of the modern world with dramatic insight… a great read. JAMES LE FANU, GP, WRITER AND MEDICAL COLUMNIST FOR THE DAILY TELEGRAPH

  [The author] has woven and moulded her extensive knowledge of ethics, moral dilemmas and clinical concerns with great skill into real life, everyday, stories of drama and of tragedy. INFANT

  Praise for Right to Die

  This is an immensely sensitive and thoughtful book. It tackles in raw and compelling detail the deterioration caused by degenerative disease, while at the same time exploring the ethical issues surrounding assisted dying. The characters are real and attractive; their pain almost tangible. This is an astonishingly authentic-feeling insight with a highly articulate and intelligent central character. SHEILA MCLEAN

  This heart-rending book about a young journalist who has all to live for but is dying from Motor Neurone Disease is written with a rare understanding of the conflicts and horrors of such a death. Those who read it will understand why the law needs to be changed to allow assisted dying as an option for those whose quality of life has disintegrated and who wish to end their unbearable suffering. LORD JOFFE

  Praise for Vacant Possession

  Hazel McHaffie interweaves a scintillating web of medical ethics reflections into her exciting whodunit. Highly recommended both for the whodunit and for the reflections. RAANAN GILLON, EMERITUS PROFESSOR OF MEDICAL ETHICS, IMPERIAL COLLEGE, LONDON

  What a tangled web! Enough angles to keep even the best ethical mind going for a week or two. GEOFF WATTS

  Praise for Paternity and Double Trouble

  …‘medical-ethical-romantic’ – an entirely new genre for fiction and an absorbing and fascinating one too. FAY WELDON

  Hazel McHaffie, already an award winning author, has woven together authentic clinical details and ethical dilemmas with a lightness of touch that transports the reader effortlessly into the world of scientific medicine… these novels are accessible and compelling and will be enjoyed by general readers as much as by philosophers and health professionals. BRIAN HURWITZ, PROFESSOR OF MEDICINE AND THE ARTS, KING’S COLLEGE, LONDON

  These two books are outrageous and you must buy them at once… Quite how the author manages to include donor insemination, child abuse, infertility stigma, genetics, surrogacy, PGD, mental illness and medical ethics into two narratively linked romantic tragedies I am not literary enough to know, but she does so in a readable, uncontrived way. JENNIFER SPEIRS, JOURNAL OF FERTILITY COUNSELLING

  Right to Die

  HAZEL MCHAFFIE

  Luath Press Limited

  EDINBURGH

  www.luath.co.uk

  This novel is a work of fiction. Any references to historical events; to real people, living or dead; or to real locales are intended only to give the fiction a sense of reality and authenticity. Names, characters, places and incidents are either the product of the author’s imagination or are used fictitiously, and their resemblance, if any, to real-life counterparts is entirely coincidental.

  First published 2008

  eBook 2014

  ISBN (10): 1-906307-21-0

  ISBN (13): 978-1-906307-21-9

  ISBN (eBook): 978-1-909912-99-1

  The author’s right to be identified as author of this book under the Copyright, Designs and Patents Act 1988 has been asserted.

  The publisher acknowledges subsidy from Scottish Arts Council towards publication of this volume.

  © Hazel McHaffie 2008

  Acknowledgements

  Degenerative illnesses strike fear into the hearts of most of us and learning about the effects of Motor Neurone Disease was a daunting experience. I am indebted to Dr William Whiteley, Sandra Wilson, Ann Callaghan, Carole Ferguson and the Motor Neurone Disease Association for their guidance and advice.

  During the writing of Right to Die three members of my own family were fighting serious illnesses, so immersing myself in the decline of my principal character could have been overwhelming. The combined support of a wide circle of special people, too numerous to mention by name, kept me afloat and I thank them all most sincerely. They should take credit for enabling any emotional authenticity in the book.

  Professor Kenneth Boyd deserves a special mention. He has managed to fit reading my manuscripts into his busy schedule for more than a decade now and I am immensely grateful for his constant encouragement and wise critique.

  To the team at Luath – Gavin MacDougall and Leila Cruickshank in particular – a big thank you for believing in the product and involving me in the choices. Jennie Renton is the best editor any author could wish for. She held a kindly mirror up to my faults and then stood back while I did my own pruning. I salute you, Jennie.

  Once again my two most devoted fans, Jonathan McHaffie and Rosalyn Crich, who are also my son and daughter, maintained an active interest in my writing and gave me valuable feedback. And my husband, David, tolerated my preoccupation with his usual equanimity, gave me the benefit of his meticulous eye for detail and became the invisible coffee-maker.

  For Pat, who faced her own dying with such courage and faith, but chose a very different ending.

  ‘Murderess! Murderess! Murderess!’ Already huddled into a corner of her cell, her only retreat was to close her eyes to the condemnation.

  Two rough hands reached out and jerked her arms from their protective arc around her head; ten inches away a single pair of eyes glittered with hatred. Dark brown eyes. Eyes that Adam had inherited from his mother, except that his had been liquid, soft, admiring…

  ‘Yes! Murderess! May you rot in hell. Eternally!’ Mavis ground out through clenched teeth.

  Sharp fingers clawed the flesh of Naomi’s arms, then Mavis spat in her face and flung her daughter-in-law from her.

  It was no consolation to wake from this recurring nightmare. The guilt Naomi carried during her conscious hours was no more rest
ful than the tortures of the night. She didn’t need Freud to analyse the central role Adam’s mother played in every variation of her dream.

  She threw back the bedclothes and let the breeze from the open window dry the trickles of sweat from her body. For a long time she lay staring at the ceiling, but in the end, as always, her eyes flicked to the bedside cabinet… to the plain white envelope. Even from her position on the far side of the bed, the typed instruction was clearly legible: Open only after my death.

  Maybe that was why these fearful nightmares persisted. Maybe if she moved the envelope somewhere where she couldn’t see it... But then she’d never open it.

  With trembling fingers she inched open the sealed flap. Words lurched on the single sheet of paper before reluctantly forming an orderly queue. Naomi read the entire page without moving anything but her eyes; even her breathing seemed suspended.

  Every instinct screamed at her not to obey his instructions, not to go into his study, but clutching the paper in one suddenly damp hand, she forced herself to get up and walk down the hallway.

  Do it, girl.

  Open the door.

  Go to his desk.

  Switch on his computer.

  Rows of icons glared at the intrusion. Robotically her finger on the mouse button guided the cursor.

  Open folder: ‘Diary of a disease’.

  Open file 1: ‘The beginning’.

  13 JUNE 2006—Today I heard my future collapsing. Not yesterday as you might expect – the day I got my diagnosis – but today. Curiously, it wasn’t one spectacular explosion, but a kind of defeated crumbling in on itself. The sound of… what? Twenty, thirty, forty years, just being extinguished. The authorities know exactly who’s responsible for this vile deed, but as the victim of the crime, it’ll take me a bit longer to get up to speed with the villain’s modus operandi and the consequences for the future – what’s left of it, that is. And being a wordsmith by trade, I guess I want to try to capture my reactions, exactly what it feels like here and now, before other people throw disguises over the bits and pieces that survive the blast, and before I have time to adjust to the changing dimensions of my life.

  Perhaps I should have been prepared to some extent at least, but I confess I wasn’t. I was expecting to hear ‘virus’, ‘stress’, ‘after-effects of whatever’ – standard answers to a hotch-potch of symptoms. Medical-speak for ‘I haven’t a clue’. Presumably it takes time to unwire the brain from that sort of expectation and leave it receptive to a completely different message. In my case it took fifteen hours.

  I heard the actual words at 4.15 yesterday afternoon. I don’t remember driving home afterwards but I do recall a vague surprise that the house was fixed in its usual place, the washing machine had finished its cycle and the clothes lay deflated around the drum waiting to be hung out on the line as if nothing had happened. How annoying. Why hadn’t Naomi pegged them out before she left for work? – in case. And I remember a feeling of betrayal that the cat wasn’t intuitive enough to know that this was one occasion when I’d have appreciated the feel of her softness wrapping around my leg, one of her full-bodied purrs vibrating against a limb still sensitised to such a welcome. Instead I got a half-hearted identity check before she closed her eyes and settled back to sleep.

  I felt incredibly alone.

  When I surfaced at dawn this morning the doctor’s words were written in capital letters across my first coherent thought. I fought the realisation, willing myself back to that daze of yesterday, when I was incapable of joined-up thinking, never mind anything remotely analytical or philosophical – or better still, to the blissful ignorance of the day before.

  But today’s knowledge refused to be suppressed. As the blood-orange stain from the rising sun spread higher in the sky, the reality of my predicament seeped out through my restraining sandbags. So here I am; trying to take the next logical step. One thing I do know: I can’t deal with anyone else’s emotions or opinions, and certainly not their platitudes – not yet. Not until I’ve got my own ideas into some sort of order. And that won’t happen overnight. I’ve got to inch myself into this one.

  I’ve always been wary of knee-jerk reactions. My phlegmatic responses infuriate Naomi at times, I know.

  ‘Sometimes – just once in a blue moon – can’t you get mad and scream against an injustice or a tragedy or just something that irritates you?’ she yelled at me one day.

  ‘Why? What good would that do?’ I said.

  ‘It’d let me see you’re flesh and blood, not a stone!’ She was positively spitting exasperation. I could see that, even back then when I was still pretty clueless about female behaviour.

  But perhaps that very habit will stand me in good stead now. Heaven knows, I need all the help I can get. Anyway, I’m going to try to apply a bit of logic to this situation. Take it step by step. Talk myself through it.

  Okay. Here goes.

  Point 1. You’ve had what they call a life-changing experience.

  Agreed.

  Point 2. You’ve got to try to get to grips with this and work out a strategy to cope with the change and live the life.

  Agreed.

  Point 3. First step in the strategy.

  ???

  ..………………….….

  I’ve been sitting here for several minutes now. Not writing anything, staring at the screen. I put the dots in just so the machine would know I was still there, still ‘active’.

  I never saw myself as a coward. Last week if somebody had challenged me to say what I would do in these circumstances, I’d have been pretty confident I’d be strong and practical and just get on with it. I am one of life’s copers. I don’t do hysterical. I don’t do maudlin. I don’t do ostrich.

  First illusion shattered – well, maybe just cracked.

  Point 4. I have to get over or around or underneath this block.

  But how?

  I know. I’ll pretend it’s a column for the rag that pays my wages. Just the usual Wednesday scribble.

  First draft: Adam’s Analysis

  I’ve always hated that expression: today is the first day of the rest of your life. So hackneyed. But today – the day after my diagnosis – I felt the truth of it. Nothing will ever be the same again. My face has been pressed up against my mortality, its filthy stench has been forced into my nostrils, its grit has grazed the corneas of my eyes. Whichever of my senses I use, the stimuli I process will be tainted by the effects of yesterday’s encounter with destiny.

  Okay, I know we’re all on the road to death but this is like getting into a souped-up machine with no brakes and teetering on the brink of a one-in-three gradient with no escape routes and no emergency services standing by.

  How do I personally feel?

  I feel as if I’m lying flat on the floor with an entire building crushing my chest. Whichever way I swivel my eyes it’s pitch black. I know they say (who exactly are ‘they’?) once the shock wears off, the ceiling lifts. It’ll have to lift a bit if I’m not to suffocate to death this very week. But the brutal reality is, this particular ceiling isn’t ever going to lift very far. Even on good days I know it’ll be there, lurking like a malevolent presence. I can’t go back to the illusions of babyhood; thinking that if I can’t see it, it doesn’t exist. Speaking of which, we had a geometry teacher, Mr Fuggins, (yep, that really was his name) who used to prove to us with step-by-step logic, that if a cactus flowered in the desert and nobody saw it, it didn’t flower; that a yellow canary was actually blue; or that two and two equalled five. I never could see the flaw in his arguments and it was an ongoing insecurity in a troubled adolescence.

  Anyway this thing is there and not even Fuggins, long since gone to argue philosophy with his Maker, could magic it away. Worse than that, it’s actually coming towards me – in tiny increments maybe – but the general direction is always down, never up. There are no heroic firemen out there who’re going to rush in and shore it up at the eleventh hour. I’m not going to be able to ga
ther one superhuman burst of power and energy and escape from this particular collapsing building. And I don’t believe in an interventionist God.

  It will come down.

  I will be trapped inside it.

  Nobody will rescue me.

  Given that inexorable fact, what am I going to do to distract my attention while this happens? And how will I spend my life – what’s left of it?

  You hear of people who know they have x minutes left before a bomb goes off, or a vehicle bursts into flames, or they drown. People say their whole life flashes before them. But what about when the countdown is longer – weeks or months – or even years? You can’t keep flashing back. I mean, even I’d get bored with that number of replays of my quite unexceptional life up to now.

  Okay, I know there are saintly souls facing death who dedicate their lives to doing something altruistic. Carrying out daring stunts. (Nothing to lose really if your days are numbered anyway, says he, cynically.) Raising stacks of money for good causes. Establishing help-lines to encourage other people going through the same tunnel. Is that the sort of thing I want for myself? I don’t know. Not yet. I have no perspective on this thing yet.

  But one thing I do see, even at this early stage. I’ll have to measure my life in other terms now. The question is, what terms? What really matters?

  A sudden leap of fluff from the floor made Naomi startle. The pale blue-grey hair slid silkily through her fingers as Noelani curled onto her lap.

  ‘I know. I know. You can’t work it out. He’s gone but he’s here. Me too.’

  Slow tears dripped into the forgiving fur as her breath caught unevenly in her throat. It was like listening to Adam’s voice again. His presence seemed to be curling out of the screen, pervading the very air in the room. His fingers were on the mouse, warm over hers.

  ‘Oh, Noelani. What are we going to do without him?’

  The wide eyes of the Persian stared back unblinkingly. The breed had been her choice, the name Adam’s.