What does it matter anyway? It doesn’t change a thing. There are more important things to focus on.
‘So what can you do? What’s the treatment?’
‘We can offer you treatment but I’m sorry to say, not a cure. We’ll do everything we can to ease any symptoms and prevent unnecessary complication but it wouldn’t be fair to hold out any false hope.’
Sledgehammer came to mind. What happened to softly-softly?
‘There are a number of drug trials going on and I think in time we should look at some of these and see how you feel. It’s probably not appropriate just now.’
He was right. My cup runneth over already; spare me a deluge on top of everything else.
Naomi frowned suddenly. She double-checked the dates. Yes. An abrupt end. Nothing for five days.
Odd.
19 JUNE—This past weekend seems to have lasted a fortnight. I don’t think I’ve ever craved access to my computer so much as I did over these three days. It was a form of cold turkey, I guess. My brain was still feverishly working on the text, especially in the stillness of the night, my soul searching for a forgiving receptacle, something strong enough to bear the weight of my chaos. I tried scribbling down some of the thoughts but it was too inhibiting – it’s the flow, the interconnectedness of words as well as ideas that I was seeking.
On previous trips I’ve always loved the sheer depth of the silences in that remote part of Cumbria; this time I felt as if I was being sucked through a giant pipette and lifted away from the rest of humanity for a glimpse of eternity. All that blackness. All that nothingness.
When we booked, the weekend break – pre-the-diagnosis – three nights in the Lake District, just the two of us, Naomi and me, sounded like bliss. Only a couple of hours’ drive from Edinburgh, but a completely different world. Tramping in those peaks, soaking up those views, savouring each other again. Far away from deadlines, editors and emails.
As it was, my mind seemed to reconstruct even the simplest things. How long would – no, will I be able to tramp? How soon will my view of life really start to shrink? How long will Naomi still want me? (Heavy-weight groans here! She’s just so beautiful, so utterly luscious herself.) How long can I keep my editor, or worse, Harry! from knowing my secret?
Will there come a time when even emails are beyond me?
Poor Naomi got a raw deal. I know she wanted me to let her inside the steel fences. She’s got sharing down to a fine art. And she invented comfort! But I daren’t. I haven’t staked out my exclusive territory yet, haven’t measured up the spaces she might be able to sidle into alongside me. Until I do, I have to keep everything padlocked. I know she’s getting snagged on the barbed wire trying to find a way inside for herself, but she’ll cope better with her own scratches than she would knowing I’m mortally wounded.
Sugar. Sugar. SUGAR. SUGAR! As she would say.
Just thinking about her and what she’s facing makes me want to go out and throw myself in front of the next Virgin Voyager. Just to get it over with so she can get on with the rest of her life.
The words blurred. The rest of her life. Without Adam. It was unbearable.
Sometimes even yet she forgot. She’d wander into his study looking for him. She’d come home and call to him. The realisation when it struck knocked her off-balance all over again. Distraction, hard work, sleep – nothing erased the sheer emptiness.
He was right about the barbed wire. Well, partially right. She had felt the scratches but written it off as her own ineptitude. Even sensing something of his lead-lined defences she’d seen it as her responsibility to find a way to take some of the weight, not his job to hand the burden over.
The trip to the Lakes had seemed like a perfect opportunity. Away from the demands of busy lives, time to talk about this monster that had forced its way into their ordered lives; to face it together. But he’d made it perfectly plain it was no such thing. Striding up the hills, teasing her if she fell behind, quick to cut short the breaks. Keeping her laughing through dinner with ridiculous tales from work, jokes from his literary friends. At night stilling her tentative broaching with his kisses, fierce kisses that seemed to pack the longing of decades into seconds.
Through the veneer she’d glimpsed something of the brittleness, but it seemed disloyal to persist.
Naomi shrank down into herself now, recalling the sheer frustration of every speculative attempt thwarted. Why hadn’t he confided all this to her instead of his computer? Why had he shut her out? Couldn’t he see it devalued the impact of the diagnosis on her, denying her a role.
In carefully calibrated doses she replayed the video of that weekend through her head: the manic walking, the obsessive banter, the fierce loving. But this time, through his metaphors, she saw things for what they really had been. A diversion away from the land mines inside his own barricades. For her own protection. While she slept, he was returning to look deeper and deeper into that crater alone and unaided.
In the depths of his despair he had still put her interests before his own. And she had silently cursed his selfishness.
She laid her head on the desk in front of his confession and wept.
20 JUNE—Harry’s reminders about his deadlines are really starting to rile me. 2.15 this morning I finished working on that cursed column this week. And boy, was I knackered. That tells me more than anything else how much I need to get some of this other baggage out of my system. When writing’s a struggle something’s cluttering up the space.
One thing I have decided; for the purposes of this diary of my disease, I have to forget the old literary brio and just write as I feel. It doesn’t matter. There’ll be no coven of critics circling out there ready to pounce on my pedestrian prose, denounce my implausible plot, dissect my uni-dimensional characters. If I just let it flow, this machine can be my counsellor, my confidante, my depository. That should take some pressure off.
And another thing I must record – now, while it’s fresh. Lying in bed last night, I caught myself thinking about the world going on without me. How will Naomi remember me? I need to get this right. For afterwards. For her.
Naomi shuddered and hunched herself deeper into her jacket. The sun might be staining the walls of Adam’s study golden yellow but the bleakness she felt was the colour of December.
His aloneness tore at her heart. Even now, too late, she wanted to reach out and encircle him with her love. But from the beginning he’d been standing outside her orbit, planning his solitary strategy, hiding the mental torment. Nothing new in fact. He spent most of his life working alone. She could see him yet, totally absorbed, crouched in front of the screen, not surfacing until he’d perfected each column, each sentence, each word, each punctuation mark.
‘Mr Perfectionist,’ she’d said when he’d let his meal go cold yet again. ‘You descended through the mules not the monkeys!’
‘Devil’s in the detail,’ he’d retorted, mechanically putting the food into his mouth, not tasting it; still with his writing.
She’d tested him once, slipping a hefty dose of horseradish sauce into his mashed potato. He’d swallowed it without so much as a puzzled look.
Oh, if she could only cook for him now there’d be no recrimination, no tricks. Several times she’d automatically laid two places at the table, warmed two plates, and she still hadn’t properly adjusted the portions. Every time a knife turned in her heart, robbing her all over again of appetite and purpose.
It was a struggle to return to the screen.
21 JUNE—I’ve got the house to myself tonight. Naomi’s out at some hen party, not due back till after midnight. A whole evening to write this diary. Better than any trick cyclist’s couch any day!
Part of the problem is I haven’t worked out the structure. Old Macdonald – our English teacher, not the farming legend – used to say: ‘Start at the beginning, boy, start at the beginning. Hopefully before I retire you’ll have got to the end.’ Blooming heck, the beggar went to school with Methuselah
’s Dad! Way past retirement age already by the look of him. I used to have visions of him sitting swathed in that greening academic gown slowly metamorphosing into a skeleton while he waited for one of us to finish writing an essay.
Okay. The beginning.
I’ve never been one to dwell on my health; far too much to pack into life to get side-tracked with niggles and aches. But in retrospect, I guess, it started with a sort of clumsiness. I got pretty fed up with myself. Losing a game of squash against Fred, my timing a fraction out. Feeling I was in danger of falling over my own feet. Slopping coffee on my copy. Cutting myself shaving on the very morning I was meeting Kirsty Wark!
Once I started to notice it, of course, I took steps. Cut down on the caffeine. In my line of work you need something to keep you fired up. Five mugs in a day is nothing unusual, wine at night, the odd snifter of spirits later to keep you firing on all cylinders into the wee small hours. Goes with the territory. I cut back on that, too, even my all-time favourite, port.
It seemed to work; I was back in control. And it was about then that people started to notice my column. Quality stuff, the chief said. Worth missing the odd glass of Cabernet for that! He slipped extra assignments in my direction. Other editors tried to seduce me their way.
Naomi leaned back in the chair. What understatement. Adam had been like a man possessed. Snatching sleep when he must, he’d careered headlong through every day, spilling out sparkling columns and features apparently effortlessly, energy left over for working on his novel well into the night. He’d diverted her remonstrances with a lopsided grin, promising her ‘a night to remember’ or ‘the luxury of your choice with the proceeds’. And he’d more than fulfilled those promises.
‘The better the memories, the emptier the present,’ a bereavement counsellor had written in her sympathy card. Memories didn’t come better than hers.
She hadn’t noticed the ‘clumsiness’. Had she been too absorbed in her own career? Would it have made any difference if she had seen the warning signs?
I have to admit I knew I was getting stressed, but heck, we’re all living on our nerves in the media business. You need some tension to get the adrenaline rush.
I put what happened in Nottingham down to stress. Now I suspect it was an early manifestation of trouble. I was researching a piece about some kid being denied entry to an exclusive private school. Foundation for a diatribe on injustice. Boy, what a grind! The lads in that school could do with a dose of state education in an area of multiple deprivation. The parents of the excluded kid had more attitude than personality, and the headmaster was a supercilious git, so I was pretty hacked off with the whole scenario by the end of the day. I didn’t take much notice of the stairs incident.
Anyway, there I was running up the spiral staircase at the hotel after dinner. The lifts were having tantrums and I was keen to get the copy finished and forget about the morons I’d spent the day with. But half way up the second flight I was suddenly struggling. It was as if the power supply had been reduced to half. I had to lean on the banister rail and wait to recharge.
I was fine again sitting in my room typing up the story and I had an early night – well, 1 o’clock instead of 4! And I drove home in a oner next morning. Naomi left me in no doubt about the stupidity of that little aberration afterwards, but I needed to put distance between myself and the whole sorry pack of over-privileged whingers. By the time I got home I remember my arms felt stiff and my right wrist seemed oddly flabby but then, I’d been steering the mighty chariot for best part of nine hours, give or take a traffic jam or two.
So, given my ostrich tendencies, what was it that took me to the quack in the end? Being beaten at golf! I’ve always been better than Fred on the old hallowed turf. Always. Ten years now we’ve been slicing up the divots together on a fairly regular basis and suddenly I find myself struggling to keep up with him walking from hole to hole, and I just couldn’t seem to find what it takes to whack the ball for the long drives. Now that’s more than a chap’s pride can tolerate.
The GP, Dr Curtis, didn’t know me – I was going to say, from Adam. Huh! And I couldn’t really breeze in to a perfect stranger and say, ‘I want a cure for being beaten at golf!’ I warbled on about weakness and clumsiness, knowing he was probably thinking, What a time waster! But he just sat there, apparently listening, and then he overhauled the old carcass, listening to the hullabaloo inside, knocking joints, assaulting reflexes, extracting blood, asking a million completely unconnected questions. Hmmming and uhh-hhuing cryptically like a veritable Dr Cameron on a dour day.
A couple of weeks later he calls me back to say bloods are all normal, etcetera, etcetera, but he’d like me to see this guy Devlin. Neurologist. Hello? What’s up, Doc? I thought. Even I – king of hospital-avoiders – even I know you don’t get to see one of the men on pedestals unless your local witch doctor thinks you might be in trouble. I asked, casually: ‘Why?’ He mumbled on about viruses and post-viral syndromes and various incomprehensible differential diagnoses for a bit, but when I tried to extract the uncoded thinking, he was as vague as the Cuillins in the middle of a downpour on Skye. ‘Let’s just wait and see,’ seems to be the stock phrase in the medical fraternity.
I rationalised it: he didn’t want to say something incautious and have me after him in the courts. They’re all increasingly litigation-conscious now, aren’t they? And the last person you want pursuing you through the legal system is a bloody journalist! Especially one who writes a weekly column in a national newspaper, never mind a scribbler who’s getting rather well known for his perspicacious exposés!
Naomi let out a long sigh. She’d been so confident that Adam believed his theory of post-viral fatigue she’d let him go off unaccompanied to both the hospital appointments without making any effort to change his mind. Oh, she’d offered to go with him, but he’d dismissed the need out of hand. ‘Completely unnecessary. You’ve got far more important things to do with your time than nursemaid me.’
He hadn’t mentioned the fact that the hospital had recommended he bring someone with him for the second visit. ‘They might do more tests. I’ll just take a taxi. No time to fit a court case for dangerous driving into my busy schedule this month!’
So he’d been entirely on his own, hearing the diagnosis, asking the questions, returning home afterwards. She’d been at a conference that day. At the exact moment he’d heard what was wrong, she’d been indulging in a leisurely break with Kit, with nothing more serious on her mind than whether to choose a doughnut or a chocolate éclair with her coffee.
She hadn’t touched a doughnut since. Come to think of it she hadn’t touched food much at all. Everything tasted like cardboard.
The first visit to Dr Devlin. An odd-looking fellow. Dapper, inasmuch as he’s ultra neat, every strand of hair in place, tie colour co-ordinated with his shirt, impeccable Windsor knot, shoes polished like an Army recruit’s been waxing since dawn – that kind of thing. But his right eye hasn’t been on speaking terms with his left for some time, I’d say. The minute one veers round to fix your attention the other casts its gaze to the ceiling. You do your best to ignore it but eventually it becomes mesmerising and I got confused about which one was really representing its owner. On top of that he has a nervous habit of jerking his shoulder as if the head of the humerus doesn’t quite settle neatly into the socket, or maybe he’s still recovering from carrying his golf bag over the weekend. It crossed my mind that, being a neurologist, he cultivated these eccentricities so that patients would focus on his disadvantages rather than their own problems, but I doubt it’s possible.
However, he wasn’t behind the door when brains were allocated. Smart cookie and no mistake. Only snag is, he’s signed an oath not to divulge his mighty medical musings. Sealed with his own blood, I shouldn’t wonder.
Okay, he deigned to tell me about a catalogue of tests they would do: various ‘bloods’, lumbar puncture, MRI scan, electromyography… but my uninitiated brain skipped about b
etween the possible connections and failed to find any underlying logic. It seemed reasonable to ask what he was looking for.
‘Oh, we just need to get a better overview of how your body is functioning. Give us a baseline. Let’s wait till we get a clearer picture of everything before we start speculating about what might be wrong – if indeed there is anything really amiss.’
So bloody patronising I wanted to do something violent. But I concentrated on visualising him naked, directing traffic in Oxford Street. Seb, a journalist friend, gave me that little gem of advice when I was a raw recruit taking my first tentative steps as a reporter. Stops you taking the insults personally and possibly lowering your own standard of professional behaviour, he reckoned.
But the fact remains, his state of undress notwithstanding, I definitely didn’t like Devlin’s insinuation. I mean, me – lead-swinging? It took the combined force of Naomi and the quack to get me to agree to set foot on the medical conveyor belt in the first place.
Naomi knew he’d got under my skin and did her best to bandage the wounded pride, bless her: he didn’t mean it like that, she soothed; in these cash-strapped days, in a beleaguered NHS, nobody who expected a lucrative pension would commission all these expensive tests unless they were pretty confident there was a chance they might throw up something of consequence. Well, maybe not in quite those words! But then she realised what she’d said and instantly went into reverse and smothered me in reassurances.
Of course, back then I didn’t think it would be anything serious; and I certainly didn’t know that there are no specific tests for MND (which was what this guy with X-ray eyes – even if they zapped independently – was already suspecting). I just didn’t need anybody suggesting I was being a wimp and wasting medical time. I think at the time I mumbled something acerbic about it being the GP’s idea to refer me to Devlin, not mine.
Right to Die Page 3
