‘Why on earth Noelani?’ she’d asked.
‘It’s Hawaiian for beautiful one from heaven,’ he’d grinned.
‘And since when did you know Hawaiian?’
‘Since yesterday. Got it out of a book of names. Nice choice though, huh?’
Noelani was certainly beautiful. With all the elegance of her pedigree but all the common sense bred out of her. More heavenly than earthly – he had a point. And she was indisputably his cat; his study was her territory, she shadowed him more assiduously than any private eye.
Naomi shivered and resolutely turned her back on the haunting emptiness. She made herself back-track through the text to mention of her own name. The incident had remained in her memory too. They’d only been together a short while then. She’d been fuming about the iniquity of a group of suburban housewives campaigning against a hostel being proposed for their street. Adam had listened to her ranting with a bemused expression on his face, and then shrugged his shoulders without comment.
‘Have you been listening to a word I’ve said?’ she’d flung at him.
‘Yes.’
‘And?’
‘And what?’
‘Well, what do you think?’
‘About what?’
‘These bigoted, privileged housewives, of course!’
‘You’ve said it already.’
‘But what do you think?’
‘It’s life. The not-in-my-backyard syndrome.’ He’d actually flicked his hand dismissively, fuelling her rage.
‘But don’t you care about these deprived kids?’ She’d glared at him.
‘Yes, of course I care.’
‘Well then?’
‘Well what?’
‘Well – why don’t you sound like you care?’
‘What does caring sound like? Screaming and shouting? What good would that do?’
‘Like me, you mean?’
‘Each to their own. But I don’t personally go for the hysterical approach.’
It had been the last straw.
‘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’d yelled.
‘Why? What good would that do?’
‘It’d let me see you’re flesh and blood, not a stone! That’s what. Oh, you are the most maddening creature alive!’
She’d stormed out of the room and thrown washing into the machine before venting her frustration on the unsuspecting roses. The harsh pruning had actually resulted in a vigorous new growth and an abundance of flowers that summer. A happy summer. Happy because they’d committed themselves to being together for the long haul. Happy because their lives were good – fulfilled, healthy. Happy because they had plans for the future. Shared plans.
Summer was always her time of year. She was like an addict deprived of her supply in the melancholy months of winter. Even her mother had teased her that she was a foundling stolen from a tropical desert island.
It was summer now too. Its warmth stole uninvited into Adam’s study, its golden light reflected off the edge of his screen. But this year it was an impertinence. How could the sun shine? The whole world should have remained shackled to winter.
She jerked the screen crossly to shut out the oblong glare. In the sudden opaqueness behind her fingers she had a sensation of Adam reaching out to her. He’d told her once: ‘I’m the wound; you’re the cry of pain.’ It bound them together in the struggle. If she could only touch him now! Since he had gone beyond her reach she had begun to realise how much touch had meant in their relationship – the easy incidental brushes of close proximity, the spontaneous reaching out of everyday affection, the intimate exploration of passion. Her body was his; his body was hers.
She closed her eyes, willing him to stay, wrapping her arms around herself, hugging the illusion before it faded… as it always did, leaving her free-floating, bereft.
She reached out instinctively. The reflection on the screen approached… retreated.
The cat looked up reproachfully before closing her eyes and settling back to sleep across Naomi’s legs.
14 JUNE—Yesterday was another shattering-of-my-illusions day. What a pitiful output! This is me, a professional writer, for goodness’ sake! Words are my currency. They’ve kept me in my favourite brand of port; financed the holidays; paid the mortgage since I was twenty-four. Ask me to write a column on… I don’t know – custard! – and I can find an angle that’ll have you smiling, or make you think, or just force you to dash off a response. And when you’ve got editors breathing down your neck every week you have to think laterally, quirkily. No mileage in telling Joe Bloggs what he sees and knows without any help from his friends.
So here goes!
I’m picturing my mind like a bag made of stretchy fabric. Sexy silver Lycra – why not! It expands to accommodate thoughts as they come in. It sags when I’m not funnelling new stuff into it. Nobody likes flab. I certainly don’t – hence all those hours at the pool and the squash court. So I’m going to set myself a target.
Resolve 1: Keep the bag expanded. Don’t let it deflate whatever happens to the old carcass.
Resolve 2: Keep the ‘I’ in MIND. The real me. The logical, rational, thinking me. The essential Adam Willoughby O’Neill. (Thirty-eight years on I’m still trying to forgive my father for my middle name.) It’ll be symbolic of my mental attitude. If the bag stays nice and rounded, so will I be. As long as I retain my identity this thing hasn’t beaten me.
Writing ‘MIND’ inches me towards my goal. Take the ‘I’ out of it and what have you got? MND. MND. Shorthand. For a disease. A disease which I have. I don’t want it, but it’s here to stay.
MND. Motor Neurone Disease.
What do I feel at this exact moment, acknowledging that?
Strange. Nothing in particular. Presumably that’s because it’s just so many letters. I haven’t really owned it yet. I’m not really inside it.
Hmm, let’s go back to when I first heard it.
Was it only two days ago? Seems like two hundred years. I was still in work mode then. Adam O’Neill, investigative journalist, columnist, would-be novelist. Researching my material. Amassing facts.
What’s MND – exactly? What’s the treatment? How long have I got? What will happen? What are the options? I was inside my professional armour. The facts weren’t for me the man, the patient; they were for my column. Fire away. Ask the relevant questions while you have the expert captive.
And today? Yep. Sitting here consciously absorbing it, it’s a totally different kettle of fish.
MND. Motor Neurone Disease.
It’s a life sentence. Okay, now we’re talking my language. Letters, words, sentences. A sentence. A life sentence. I could write a satirical piece on that. *(Transfer to Ideas folder later) But not now. I mustn’t let work deflect me from today’s goal.
In spite of the pain Naomi felt a smile twitch the corners of her mouth.
‘Trust you, Adam!’
Even in the midst of his personal hell he’d clung to his habits. Free-falling through horror he’d seen the potential to turn his own agony into literary gain.
‘I told you! You were never off-duty!’ She wagged her finger at the screen.
How often it had happened. The notebook and pencil would suddenly appear in a restaurant where they were supposed to be enjoying an intimate dinner, or she’d find him behind a pot plant scribbling instead of mingling at an art exhibition, or she’d half-wake in the night to find him sitting up in bed committing his ideas to paper before he could go back to sleep. Writing was in his blood. His antennae were always alert for a story, an unusual take, a way in to an opinion. Even, it seemed, facing his own disintegration.
‘Come back! All is forgiven. Oh Adam. Adam. How could you leave me?’
A life sentence. No reprieve. No cure. That’s why it’s ‘life’. There’s no prospect of a stay of execution hovering on the horizon, nor even just out
of sight. Dr Devlin admitted as much.
Devilish Devlin. What a glorious name for this man who announces banishment to hell. It conjures up this cartoon neurologist poking his pronged fork into a cowering patient.
‘But it doesn’t mean you can’t go on living a good life – maybe for some considerable time,’ he said, rather too quickly, I thought. Better-throw-this-drowning-man-a-lifebelt sort of reaction.
Okay, let’s look at that jolly little promise.
‘A good life.’ What’s that when you unravel it and look at the components? Who knows? All things to all men, I’d say. Is my idea of a good life the same as his? What happens if I don’t like this so-called good life? Will my own idea of what’s good change as I start to feel the tentacles tightening? Funny how many different metaphors for this thing are coming to my brain. *(Metaphors of illness – transfer to Ideas folder).
Will I end up…?
No, I don’t want to go there. Not yet. Not today. I need to pace myself.
‘For some considerable time.’
Of course, I instantly asked him, ‘Meaning? How long exactly?’
‘We can never be exact about these things. Medicine isn’t an exact science,’ he said.
Literary philistine.
‘Well, give me a scale. Some idea.’ I wasn’t going to let him sneak out of the hole he’d dug that easily. ‘Average time.’
‘Average? Two to five years. In Scotland something like ten per cent of patients live for five years. But of course some patients have been known to survive over thirty years.’
A second lifebelt. Thrown a second too late. Hey, hang on a minute! A lifebelt? More like a concrete block!
Which is worse: contemplating having only two years to go or knowing that if I’m ‘lucky’ I might spin this out for over three decades? I ask you! Imagine being slowly extinguished by this creeping disintegration for thirty years! No, I don’t want to – I won’t – I refuse to imagine any such thing. I’m in control here. It’s down to me to make damn sure no such thing happens. But that’s for another day. First look at the shape of the monster; then consider the weapons; then decide on the strategy.
So what does it look like, this new enemy? It’s a bit like a piece of writing. It isn’t defined by a full stop – not yet anyway. Nobody knows just how many paragraphs and pages and chapters the book might have, what they’ll contain, but I mustn’t start writing the end before I’ve worked out the plot, thought through the sequence, identified the main characters.
Today, right now, there’s definitely a storyline: MND’s the substance of the book; but I’m the principal character, and I’m the author – thus far, anyway. I just have to work out how the story will unravel.
Naomi leaned back in Adam’s chair staring at his words, seeing instead a sudden vivid image of his face. Her eyes went instinctively to the photograph on the mantelpiece. It had been his choice for his personal sanctum; his favourite. He was standing behind her, arms lightly round her, his chin on her shoulder as they paused for his brother to capture that relaxed, informal moment. Four years ago. Before it happened.
She stared at the picture. His broad smile was so carefree, so happy. His skin was toned, bronzed, smooth over the strong muscles. He exuded health and vitality. She could feel the warmth of his firm embrace, his hand surreptitiously glancing against her breast, the whispered intimacies sweet in her ear.
The emptiness around her now was like a vacuum pumping the reason for her existence out of her body, leaving her light-headed.
Other images invaded her mind. Uncaptured. Unwelcome. Only partially buried. The ‘after’ images. The shadow in his dark brown eyes exaggerated by the frown drawing his eyebrows together, the right one quirked unevenly above the left. The signs of inner tension: that slightly-too-white crown on his left incisor that had broken the evenness of his smile ever since his climbing accident, clenching down on his lower lip; the restless hand suddenly combing through the wiry fair hair; the involuntary pressure of two fingers against his temple. The naked look she sometimes saw when she took him by surprise. The ragged jealousy when he’d suspected she and Brendan were…
All the doubt, the suspicion… had he recorded it? What would his diary reveal? Dare she read on? Once out, the messages could never be taken back.
She had to! She mustn’t stop. Not now. Not yet. If she were ever to understand what had happened she had to really listen to him – his feelings, his thoughts. Only now, when it was too late for her to change anything, would this man allow her to see beyond the careful façade, the pragmatism, the logical arguments, the emotional control that had so infuriated her.
But could she bear it?
The persistent ache of longing settled more heavily inside her. And this was only the beginning of his story – the simple facts.
If only. If only…
I have the drawing in front of me. Devlin may be top of his esoteric tree in the medical world but he wouldn’t have made the grade at art school. No doubt about that. But he managed to make the crude sketch look grotesque enough. Ugly spiky neurones looking ready to invade a planet. Pathways of nerves like a hideously complicated underground train track. The wiring system of the human body, he called it. Like a circuit for the Blackpool illuminations. Everything connected to something. Each bit essential to keep the whole thing functioning. By the time he’d finished I had hairy tarantulas crawling on my bare skin.
‘This disease affects the nerves in the brain and spinal cord,’ Devlin said, scribbling over various bits of his drawing. I noticed he used the definite article not the personal pronoun. Trying to keep his distance, helping me to keep mine. Just now at least. Until he’d conveyed the facts.
‘The usual messages get confused.’ His pen zigzagged across the pathways. ‘And then lost.’ A straight line severed the connection with three decisive movements.
‘The muscles then start to weaken and waste away.’ The bulging onions were reduced to flat, useless strips with two strokes of his pen.
It was his suggestion that I brought the drawing home, as an aid to breaking the news to my family. It’s just as revolting here, in spite of – maybe because of – its amateurish execution.
The spinal cord is particularly repulsive. In his doodling while he talked, he kept tracking around the skeletal outline and it has assumed all the dominance of a serpent rearing its head to inflict a mortal blow. Speaking of cord – as in spinal – I always want to spell that ‘chord’. As in co-ordination of sounds, harmony. Only now there are some discordant notes sliding in without invitation here, so perhaps ‘cord’ is better. As in knotted rope. Noose. Stranglehold.
In the privacy of my study, staring at that sketch, I’m suddenly aware – at a kind of visceral level – of the cruel irony of my situation. Communication has been such a core thing in my life. Words, thoughts, ideas, literature, writing, reading – the components of communication – are central to my professional as well as my personal life. But at this very second my physiological self is losing the knack of communicating effectively. Okay, maybe I’ll retain the power of speech for some time – perhaps even until the end. Who knows? Depends when that end is to be and how much say I have in determining it. But one by one the switches in my internal wiring will be flipped off. It’ll eventually be blackness personified in there. My only hope is to keep all the lights blazing in the upper storey.
I wanted to drag my eyes away from that slow but systematic ‘weakening and wasting’ of the muscles. But somehow I couldn’t.
‘Usually the hands and feet. But sometimes unfortunately the mouth and throat. Depending on the type.’
Before I could start to get a grip on this new nightmare scenario, Devlin was dragging me deeper into the swamp.
‘If the lower motor neurones are affected, the muscles become weak and floppy.’ He let his own hand hang uselessly. ‘But if it’s the upper neurones, the muscles become weak and stiff instead of supple. It just depends.’ His fingers assumed grotesque con
tortions.
‘And in my case?’ It came out just as if I’d asked, ‘And the next train, what time’s that?’
‘In your case, you have the most common form. We call it amyotrophic lateral sclerosis. Usually referred to as ALS.’
Common? Don’t you call me common, matey!
‘Which in real terms means?’
‘Both upper and lower motor neurones are affected. That means stiffness and weakness. We usually see this type in older patients – the over fifty-fives. But in your case…’ He shrugged. ‘Well, it’s just one of those things.’
I couldn’t even begin to go there so I rushed off in a different direction.
‘What causes it?’
‘We don’t really know. There’s a lot of research going on, and we now know a whole lot more about the disease itself and the way motor neurones function. But very little about why it happens.’
‘Very little. So you know something.’ Do you get paid for procrastinating in your job?
‘Well, in about one case in twenty, there’s a family history of the disease. We presume that in these instances there’s a genetic origin. And we’ve actually identified the gene responsible in about one in five of this small group of familial cases – there’s a mutation of something called the superoxide dismutase 1 gene – known as SOD-1. Rather aptly named, I always think.’ Wow! This guy’s human somewhere underneath that austere façade! I like it. ‘But it’s not genetic in your case. And quite how many people in the non-familial group have gene mutations we simply don’t know.’
‘So, are you saying you have absolutely no idea what causes it in the vast majority of cases? Apart from the sodding variety.’
‘I’m afraid so. Scientists, researchers around the world are searching for answers as to the possible causes. There are all sorts of theories.’ Another eloquent shrug.
You’d have thought I had enough natural curiosity and personal investment here to be soaking up what he had to tell me, but he might as well have been speaking Swahili. Free radicals, excess glutamate, deficient neuronal blood supply, slow viruses. I heard a few of the words but they went no further than my eardrums.
Right to Die Page 2
