Anyway he’s armour-plated. Years of practice warding off the barbs of shell-shocked consumers, I guess, harden the skin. So he wasn’t about to succumb to any weapons in my little amateur armamentarium. My real frustration was that he couldn’t see I was the kind of guy who needs to have the facts pinned on his mental noticeboard. As I loitered at the door on my way out, when I thought they were supposed to ask, ‘Was there something else?’ all I got was: ‘Let’s wait and see how we go for the next few weeks.’
‘Us… we?’ How I loathe this use of the first person plural. No matter how much they think they’re empathising, they are not living with these symptoms and doubts. They will be miles away, swinging golf clubs or doing the salsa with gay abandon when I tumble down an escalator and send a little old lady to kingdom come because they didn’t warn me of the dangers. *(For Ideas folder: language of power in medicine.)
During the second visit, it was the complete opposite. Just when I could have done with blurred edges, he delivered the verdict like a judge with a black cap on his head. Even his shirt was black, relieved only by the thin gold stripe in his matching tie. It has just occurred to me that those two visits were a bit like his eyes – totally unconnected. No hint of disaster in one, unequivocal devastation in the other. A spot of time in a charm school might improve his people skills!
Funny how metaphors keep flashing into my mind. In the weeks between those two consultations, an army of SAS men were assembling stealthily behind the castle wall. Not a sound could I detect, but out of sight they were all taking up their positions, forming into ranks. On the single command of the operations chief, they all sprang into action. One almighty hullabaloo and suddenly they’ve taken over the entire caboodle, lock, stock and two smoking barrels, lifting me out of the sea of tranquillity and whisking me away to a foreign prison with glass walls and no exits. And short of shooting myself or taking my secret cyanide capsule, I’m here for the duration. *(For Illness as metaphor file.)
Of course, in fairness, Devlin and his merrie men were actually stalking in the forest gathering evidence. Their reconnoitring over those five months of tests gave them a more accurate picture of the geography and the opposition. I concede that he might have done me a favour waiting until he was sure without hinting or surmising. I just got on with my life. It never entered my head who the real enemy was. Okay, the batteries weren’t fully charged yet but eighteen-hour days and yesterday-deadlines aren’t exactly conducive to speedy recoveries from exhaustion, even for the rudely healthy. I didn’t expect a miracle cure. I just blotted out the inconvenience and turned up the volume.
So Devlin gave me five extra months of delusion.
If only Adam had shared these emotions with her, Naomi thought. How differently she would have reacted from the outset… wouldn’t she?
It had been a particularly boring conference in a lecture theatre with no natural light and intermittent air-conditioning, and she’d come home with the beginning of a migraine headache, to find Adam juggling saucepans on the Aga. His terse, ‘Tell you after dinner – just let me concentrate on getting this curry right,’ didn’t arouse any suspicion and she’d slipped away to have a long soak in a herbal bath.
The room was darkening fast as she sank into the armchair opposite him, curled one leg under her and said, ‘Right. Now tell all. What did Dr Devlin have to say this time?’
She could see him now – etched against the dying light, sitting forward in his chair, elbows on his knees, hands lightly linked, his expression emotionless. No preamble. No prevarication.
‘It’s not good news, Naomi. It’s Motor Neurone Disease. Progressive. No cure. Devlin says…’
She had stared at him blankly.
His speech was mechanical, robotic even.
As the enormity of the situation impinged on her brain she felt the stirrings of… what?… resentment. How could he catalogue the facts of his own disintegration, as if none of this would touch her? She would have to witness him falling apart before her eyes. Even as she watched his lips reciting Devlin’s words, her own mental images appalled her.
This strong, handsome young man, this person she loved above any other in the entire world, would ‘gradually lose the power of his limbs’ and need ‘help with the activities of daily living – eating, bathing, toileting’… she was sitting beside his chair painstakingly spooning liquidised food into his slack mouth, one eye on the clock which persisted in ticking out normal office working hours, not the elongated seconds of an invalid’s pace of living.
He would eventually ‘lose the power to walk’… she saw herself pushing him around in a wheelchair, his emaciated body draped in an old man’s rug, grotesquely distorted limbs shouting his impotence to the staring world.
He might ‘lose his ability to communicate verbally’… she saw a quivering finger laboriously tapping out words on a keypad; heard the devastating silence of a mealtime without his crazy banter, or worse still, animal grunts spluttering through his liquidised food.
Eventually the paralysis would ‘switch off’ his capacity even to breathe… she was watching helplessly while he clutched at his throat, powerless to trade on the free abundance of air, drowning gradually in his own secretions.
‘If we let it go that far,’ Adam said tonelessly.
Shocked by the extent of her own revulsion, she was suddenly galvanised into action. Throwing herself on her knees in front of him she clutched at his clasped hands.
‘No, Adam! No! Tell me it isn’t. Tell me this is one of your crazy jokes.’
He shook his head slowly, staring at her with a stranger’s eyes.
His hands clenched suddenly on hers. She could feel his strength. He’d fight this. She looked down at the squared fingers twined with her thin pale ones. No, they’d work at this – together.
‘We won’t let it happen. We’ll beat it. I’ll help you.’
He withdrew his fingers from hers and cupped her chin, the better to focus her attention. The intensity of his scrutiny was too much for her to bear. She dropped her eyes instead to his tie, her fingers jerking along the silky fabric. The diagonal rows of black penny-farthings on the red stripes mocked in their frivolity.
‘Naomi, listen to me. No, really listen.’
She dragged her eyes back to his, willing her brain to stop long enough to hear him out. The pressure of his thumbs under her jaw was almost painful.
‘There is no doubt, apparently. I have this thing. Period. And it’s just a question of time. I need a bit of space to work out how I’m going to handle it, so I want you to just be there and give me the space to deal with it in my own way. Okay?’
‘But I want to…’
‘Please. Please, Naomi.’ Sharp. Brittle. Excluding.
Non-negotiable.
She withdrew back to her own seat, but a moment later, mumbling something about a cup of tea, escaped to the kitchen. Fighting back the panic she watched her own hands filling the kettle, selecting mugs, pouring the boiling water, carrying the steaming mugs. Her fingers metamorphosed into Adam’s, creeping across the table to envelop hers, circling up her spine, caressing her body, pulling her closer still... what if…?
He took the dangerously hot liquid in hands that looked exactly like her husband’s.
The detachment, the sheer lack of audible reaction was unnerving. Anger, sadness, fear, aggression even – anything would have been preferable to this impassivity. Turned in on himself, he seemed already to have left her. Even in bed that night he maintained his isolation. After shutting himself in the study with his computer for most of the evening, he tried to slip under the duvet without waking her, but she had simply been waiting for the opportunity to wrap him in her arms.
‘I’m here for you, darling,’ she’d whispered.
Silence.
‘Please, Adam, let me in. I want to…’
‘Not now. Please. Just let me sort things out for myself.’ The rejection stung.
‘But…’
The
sudden rush of air told her he’d thrown back the covers. She saw his silhouette travel across the window and move towards the door.
‘For heaven’s sake, Naomi. Can’t you please do as I ask? Just this once.’
She lay alone in the cooling bed, the tears falling unchecked. Anger would be preferable, would it? Huhh. Fear linked arms with the hurt. This wasn’t the Adam she recognised, the unflappable, phlegmatic half of the partnership, the one who jollied her out of her depressions and moods. Fair enough, maybe his turn for a burst of irritation was long overdue but surely he wasn’t changing already. Not before he’d even dressed in the coat of illness. Was it enough just to have it hanging on the hook waiting?
The antique clock in the hall plodded ponderously towards dawn. And still Adam did not reappear. At 3 o’clock Naomi slid fearfully into her dressing gown and went in search of him. She heard the skitter of computer keys before she saw the light under his study door. Not daring to approach too close, she whispered tentatively from the doorway.
‘Adam. I’m so, so sorry. Please forgive me?’
He half-turned and held out a hand. She advanced to grasp it in both her own and carry it to her cheek.
‘I’m the one who should apologise. Sorry I snapped,’ he said. The words were right, the tone all wrong.
‘Won’t you come back to bed? You must be exhausted.’
‘Soon. I’m just finishing off this feature. Harry was cursing about it yesterday morning. Didn’t like the reference to fox hunting; couldn’t I find a punchier opening sentence; what the hell was I trying to say; couldn’t I give it more pizzazz; all that kind of guff. Well, I’ll give him pizzazz. He’ll be jolly well choking on the pizzazz like fizz the wrong way up his poking nose!’
‘Wow! What on earth are you writing about?’
‘Death!’
The explosion left a deafening silence in its wake.
‘Look, Naomi, you go back to bed. Five minutes and I’ll have this wrapped up, and then I’ll join you. I’m all right. The better for rattling this piece off.’
‘D’you want a hot chocolate? You must be exhausted.’
‘Good idea. I’ll be finished here by the time you’ve made it.’
She backed away, the unease stubbornly clinging to her mind. Sitting in bed listening for the sound of his footsteps she forced herself to dismiss the aggrieved feelings. He was the one who had the sword of Damocles suspended over his head. Where better to vent his emotions than on her? It wasn’t personal. Not really.
She had drained her own mug before he joined her.
‘That’ll larn ’im!’
‘I beg your pardon?’
‘Harry. I defy him to reject this piece.’
‘You’re freezing,’ she said inconsequentially, wriggling in to impart something of her own warmth.
Strong arms drew her close, his lips found hers, his fingers slid over her breast, the curve of her hip ... No, memories didn’t get better than that.
Naomi dragged her mind back to the present.
Devlin isn’t the touchy-feely kind, though he did nod in the direction of the emotion associated with this thing, during that tell-it-like-it-is session.
‘Research shows it’s best to let your feelings out rather than have frustration and guilt build up,’ he said.
Research shows, does it? All very authenticating. It’s scientifically determined. It’s permissible to feel the odd churn here and there if it’s evidence-based!
But I have to admit, in many ways the guy was in tune with where I was at – nine days ago today. Facts, please. I need to set my parameters here, fill in the wavy bits later on. I guess that’s why I was such a beast to Naomi. What a swine hurting her, shutting her out. But my hold on sanity was pretty precarious; I had no reserves left to deal with her emotions.
It was incredibly therapeutic scribbling all that vitriol for my column and yelling abuse at Harry in my head. By the time I went back to bed Naomi had got the message that I didn’t want to talk. Having her close, needing me – well, I guess it was therapeutic too, right then.
But about this business of letting off steam. The way I see it, you have this airbag filling up with evil smelling gas. *(For Illness as metaphor folder.) Imagine it filling up and filling up until it explodes. It taints everyone for miles around. But if you occasionally let it seep out in a controlled way at a safe height or deposit it in designated places, it might wrinkle a few noses but it doesn’t do more than offend them glancingly. I’ll just have to be cautious about where and when with these emotions which I think I’ve got safely bottled up – especially where Naomi’s concerned. She’ll have enough nastinesses of her own.
‘Oh Adam, forgive me for blaming you,’ Naomi wailed aloud at the screen.
Sad to say, I didn’t exactly reward Devlin for his sympathy. I remember some suggestion about starting me on drugs. Sooner rather than later. I didn’t let him past first post on that one! Body’s a temple. Never dabbled in toxic substances to date; no intention of starting now. End of.
And there was some talk of referring me to some Association or other – Clinical Nurse Specialists, someone on the end of a phone… My mind just shut down. Period. There ain’t no way I’m having my life taken over by anybody, no matter how qualified, no matter how well-intentioned. I AM NOT! To his credit, he didn’t persist. My rigid upbringing made me take the proffered leaflet but not ‘in case’ I change my mind. No way, José!
It occurs to me that I chose the right profession – way back when I was a snotty little blighter with pretensions way beyond my abilities. When I was about to choose my subjects and thereby effectively close some career doors, Old Macdonald suddenly decided that I was ‘gifted’. Told my mother so. Even made some crass comment to the assembled mass of jeering adolescents in my year. I, of course, joined in the derision about his sad life; what did he know about reality post the Flood? etc etc. But secretly, scratching away at my bestsellers with a leaky biro under the covers by torchlight, I told myself this Oxford graduate, with a distinction in both English Language and Literature, didn’t distribute compliments lightly. The idea fermented and I applied myself to getting the grades for Oxford myself. Oh, I guffed about in class and to my shame I made MacDonald’s life unadulterated hell along with the rest of my cruel peers. But I sailed through the exams and the Oxbridge interviews and, once freed of the schoolboy pressure, I even wrote a smarmy letter to him thanking him for his ‘inspirational teaching’ and support. Habits die hard though, and I confess I waited till after dark to go out to post it.
And in truth I owe that cadaverous academic a great debt. I’ve had the rare fortune of being free to fill my working life with my hobby. And now in this latest unexpected turn in life, the skills I’ve honed in the intervening years should be invaluable. Whatever happens to the outer casing, if I can get unseen readers to experience my take on the real issues in life and critics to blast my column with their customary poison, I’ll still be on a level playing field. I don’t want concessions.
That’s partly why I need to keep this to myself for as long as I can. Once I come out, there’s no going back. I’ll never know if good reviews are sympathy votes or genuine signs of respect for what I’ve written.
I don’t want to be a marked man.
There are over five thousand people in the UK in this same boat. We aren’t freaks. It’s not something that comes to those who are in some way deserving of punishment. This could happen to anyone. It just happens to have happened to me.
And I don’t want pity.
I want to take my place alongside my peers, ordinary everyday people whose intellect, whose social standing, whose careers, match with mine. I don’t want curious looks, or covert furtive glances. Or allowances to be made.
It’s not much to ask, is it?
Naomi shivered. This brave analysis of his situation filled her with sadness. He asked for so little; endured so much.
Adam’s job had always been more high profile than hers.
She’d been content to beaver away behind the scenes, her reward the quiet satisfaction of providing secure homes for children, turning couples into families. But he had been driven. And more haunted than she had ever realised – until now.
She had taken the success as his due. The posthumous tributes from big names, critics and authors, journalists and publishers alike, had confirmed her belief: he was a gifted wordsmith. That he had seriously understated his talents, craving recognition for his skill and dreading any concession to his disease, she had not fully appreciated until today, but it explained why he had suddenly posted his various awards on the wall of his working space.
It was a worry he need not have added to his growing burden.
24 JUNE—I misjudged Dr Curtis. Apparently Devlin contacted him and filled him in on the details. Puts a different complexion on the old ‘fragmented service’ we lampoon so often. A senior consultant phoning a humble GP about a perfectly ordinary male patient of thirty-eight. I don’t know what he said but after morning surgery, Curtis rang. I was out earning the proverbial crust, so it was evening before I picked up his message.
‘Mr O’Neill, this is Dr Curtis at the surgery. I’ve had a call from Dr Devlin this morning and he’s filled me in on your situation. I think it would be good if you and I could meet for a bit of a chat. If you’re home this evening, would you like to ring the surgery and we’ll arrange a date. Thanks. Sorry to miss you this morning.’
A lifetime of obedience to authority figures drove me to ring immediately. Shock number two, the receptionist put me through to the organ grinder himself.
I was flicking through my diary looking for the first glint of slack to sneak out of the office and disport my anatomy in the witch doctor’s wigwam when he suddenly said, ‘I could call in tonight after evening surgery, if you’re not too busy?’ What’s a few thousand words overdue when you get that kind of offer? And the sheer deference of the thing – ‘if I wasn’t too busy’. I mean! Since when did the mighty MB ChBs of this world care a stuff about the priorities of us other mortals? I know from my journalistic explorations of the real world – though not from personal experience, I confess – it’s nothing to wait four hours in a clinic just so you’re in pole position when the demi-god elects to put in an appearance. And it’s not unknown to have him rush out to an emergency two patients before your turn, never to be seen again. The longer I had to think about why Curtis would be breaking all the moulds today, the more intrigued I became.
Right to Die Page 4
