He arrived at 8 tonight and was still here at 9.20. This is a bit of a steep learning curve for him apparently. First case of MND he’s had in fifteen years of general practice. To his credit he was pretty clued up. Armed to the teeth with professional literature and stuff off the Net. At first he concentrated on the facts and I must admit it was helpful talking about things, at an ordinary level, getting a different angle – the humble local quack not being as awe-inspiring at the ivory tower guy. So we dittered on about this and that and imperceptibly things seemed to change. It was weird. On his own territory he’s very much the guy on the clothed end, holding the stethoscope and the pharmacopaeia. Here, in my sitting room, he dissolved into a chap not too much older than me, sick to his stomach about not having a magic potion, genuinely wanting to ‘share the journey’ with me; ‘ease the burden’ in any way he could.
He’s a stolid kind of a fellow. Gives you the feeling he’s stumbled into country practice because he’s copying his dad – not that I have a clue what his father did. You get this sense that he likes a slow pace, time to reflect on life. It’s good, actually. He’s not looking at how many patients skim over his linoleum; more concerned with what state they’re in when they leave.
Not only did he undertake to call in himself periodically, but in between, he says, don’t hesitate to get in touch. Gave me his mobile number even! Devlin’s going to see me regularly but Curtis is the local ringmaster. He’s drafting in a physio and says he’ll line up speech therapists and nursing assistance, as and when. But when he got to feeding tubes and stair lifts, I freaked out. No way!
Fortunately for me Naomi got home at that precise moment and she provided the perfect cover for tea instead of TLC. While she clattered the Royal Doulton (yeah, right!) I steered the Doc into talking about himself and he took the bait. I guess it wasn’t his fault that he’d strayed beyond my tolerances. He doesn’t know about my blessed imagination; great for writing purposes, not so handy when you’re visualising your own disintegration. So I’d already gone into the kind of thinking where drugs lead to oblivion, suicide to permanent escape. Unknown to her, Naomi rescued me.
This bloke is pretty good in the listening stakes. He seemed genuinely interested in what Naomi does, placing kids for fostering or adoption, and they were soon floundering around in the mire of departmental politics like two uninhibited pigs in mud (although to liken my dainty, not to mention fragrant, wife to a pig is absurdity taken to its extremity!) The iniquities of the system led on to the inadequacies of parents and truth being stranger than fiction and bingo! we hit common ground. The guy reads medical thrillers. The three of us did a fair few rounds of literary assassinations and away he goes with my copy of A Slow Burning, a perfect sanitised excuse for him to come back and tell me what he thought.
A level playing field.
28 JUNE—Has the NHS won the entire lottery? Has a rich maiden aunt died? I’ve seen the physio already! I can’t believe the ninety-nine people on the rungs above me fell off the ladder within two days of Curtis contacting her.
They arranged an appointment for me at lunchtime so I could pop out ‘without anyone at work questioning me’ – they obviously think we work regular office hours! Chance’d be a fine thing. But nine out of ten for trying.
Anyway, enter a cross between Denzel Washington, David Attenborough and Martina Navratilova! Lydia. Lydia Lovelock. All breathless intimacy and butch muscularity. She’s of Jamaican extraction and, as she tells you with disarming candour, built for comfort rather than speed. Ample, in anyone’s vocabulary. Her tight cropped curls are greying uniformly, but her skin has that polished ebony lustre you see on the cheekbones and shoulders of models. Her black eyes disappear into the folds of her face when she laughs and judging by the depth and number of the creases, she laughs a lot. She’s nearer six foot than five and she seems to have been poured into her uniform, which moves like a second skin when she gets down to what she’s paid for. I’m no skinny weakling – well, not yet – but she can manhandle my body as if I were a well-oiled Action Man. And she has a trick of turning things into a joke against herself that takes the sting out of your subordination.
Her voice comes from the depths of some acoustic cave and the rich Jamaican pronunciations, with their rolling rs and sharpened ths, abbreviated endings and extended vowels, have a music of their own.
‘Ah’ve always had a tin about feet. Beautiful, man. Beautiful. Jus you put da left foot in ma sweaty palm, honey. Beautiful. Jus testin you know da left fram da rrrrrright. Me? Wouldn know da difference! Left, rrrrright – all da same ta me. Six goes it took, six goes, ta fool da drivin examina! Okay, now, ma hand’s da pedal a da Formula One rrrrrracer… rrrrev her up, man! More! More! Let da clutch go now, man. Beautiful. Feel da trob a dat engine! Okay. Okay. Okay. Now da rrrrright one. Cool, man. Cool. Feel da strengt in dat foot. Ah sure could do wid you chauffeurin me about da place. Get me outta trouble in two shakes a da fly’s tail. Know da left fram da rrrright an’ got da powwa ta wrench da machine t’rough hundred eighty degrrrree ta rrrrrace away fram da cops. An me, Ah sure get mysel inta some pretty pickles at times. People jus don’ understand some a da tins Ah do.’
I could believe it.
I can’t hope to capture the melody of her accent and spending time in the effort would be counter-productive to the purpose of my recording everything about my illness. A loose approximation must suffice.
Her long firm fingers slid over my torso twisting and experimenting occasionally, pausing momentarily to repeat the tests that were part of her secret search for weakness, her disengaged banter distracting my mind from the potential invasion in spite of my resolve.
‘Now, there’s a body! One careful owner. Okay, you’re gonna tell me you’re a black-belt Judo champ. One minute I’m on my feet, next I’m staring up your nostrils, my spinal cord snapped in two. Right, man? Okay, okay. Try something gentler for a start, yeah? Give me a sporting chance, yeah?’
Only when she had the full measure of my range did she drop the false accent and revert to her normal way of talking. I was annoyed with myself for being taken in at all. But I guess the technique worked. She’d grabbed my attention. And she’d made it easy to talk about my problems without circumlocution.
‘D’you take regular exercise, Adam?’
‘Yep. Golf. Squash. When I can. Swimming, three, sometimes four times a week. I guess that’s my only really disciplined regular exercise nowadays.’
‘Good. Wise choice. How long at a session?’
‘As many lengths as I can until I’m exhausted. Varies these days.’
‘Best not to overdo it. Stop before you get exhausted.’
‘But I want to keep as fit as I can for as long as I can.’
‘Yeah, I understand that, honey. But with MND, you won’t actually build up your muscles. It’s the nerves supplying the muscles that are damaged. Excessive exercise will just tire you out. Best to regulate your activity carefully and make sure you have the energy for the things you really want to do.’
She winked broadly as she emphasised the word and gave a throaty suggestive gurgle that made her whole body wobble.
With anyone but Lydia I think I’d have baulked at the cautions, but she exuded a motherly wisdom that put her emphatically in my camp.
‘We’ll keep an eye on things, eh? We’ll watch how you go and maybe adjust the exercise to suit where you are at any given time.’
That’s professional-speak for downgrade as you deteriorate. But she made it seem like the fine-tuning of a sports coach. And in her hands the plural pronoun held a genuine sense of teamwork.
‘Okay, you know already I’m phobic about driving tests and all things motorised. Guess you drive, eh?’
‘Yep. But hey, Lydia, I’m not in the running for driving getaway cars for maverick physios.’
Again that full-bellied bass chuckle erupted from her deepest reaches.
‘Sure thing. I fired all your predecessors anyway. Not a long-term
career move, honey.’ She patted my arm, for all the world as if consoling a disappointed applicant. ‘But the old DVLA might be after you as well as me if you try to slip by unnoticed.’
‘Meaning?’
‘Well, honey, these guys are a tad niggardly when it comes to things like MND. They kick up a bit of a fuss if you don’t notify them. They just need to know at this stage – they aren’t scheming to take away your license or anything mean like that.’
In spite of her reassuring tone, my mind froze. I’d have to declare it. To officialdom. It was a form of coming out.
‘And then?’
‘Well, you know bureaucrats. Always struggling to let everyone know they’re earning a living keeping Britain the imperial stronghold it always was. In triplicate. They’ll pull down their mouths and look official. They’ll put on their uniforms, and check their warrant cards, and yank their peaked hats further down over their sweating foreheads, and they’ll puff out their puny pigeon chests, and they’ll say: “Huhh. This bloke ’ere, O’Neill, Mr Adam W. Strike me, but the guy’s got a licence as clean as a baby’s bum! Nary a driving offence to his Irish-sounding name. Stap me, it’s a mortal sin to curb ’is style. Let ’im set an example on ’er Majesty’s ’ighways. ’Is GP can keep a weather eye open for us. If ’e says the guy’s kosher, that’s okay by us.” And there you are. Licence renewed. Just a wee codicil saying it’s for a certain length of time. And a wee box saying you’ll agree to regular checks from your GP, just sitting there waiting for your autograph.’
Lydia rocked back in her seat with an expression of smug satisfaction as if she’d single-handedly abolished inheritance tax.
‘You aren’t smuggling disability badges in by the back door here are you, Lydia?’ I said.
‘Moi? Smuggling? Not my style, honey. Scouts’ honour. Wait till you want to sneak in to Debenhams on Christmas Eve to get that seductive black nightdress for the little lady. That’s when you pull out the old badge, park on the double yellows and sprint up to the old lingerie department!’
‘And?’ I was waiting for the sugar to dissolve so that I could taste the bitterness of the pill she was hiding, but she looked genuinely mystified.
‘Look, I know I’m not going to be sprinting up the steps to anywhere for ever. I appreciate the humour – and I might put you in touch with my editor – you could earn a pound or two writing a satirical piece about your take on officialdom! But can we cut the flannel and get to the reality for a sec? What happens when the old Doc spills the beans about me staggering round on sticks?’
‘Receiving you loud and clear, honey. No, Doc Curtis and I – we’re legit. Our aim is to keep you mobile and independent as long as poss. And we have a shed-full of aids sitting there ready to wheel out if you need them.’
‘Even in these days of postcode lotteries and dwindling resources?’
‘Our friendly neighbourhood Doc? He’s an on-the-ball kind of a guy. Already been to see you, huhh? Got you here to see me pronto, yeah? He’s on your side. He’s no film star I grant you, but underneath that crumpled shirt there’s a big heart beating. And I’m on your side too, in case you haven’t yet twigged. And I’ve been around a while, know a few useful contacts who’ll go the extra mile for me if I need a favour. So, you need a specially adjustable seat? You got it! You need an adaptation on the Porsche? You got it, man!’
The sudden ringing of the phone gave me space. Lydia’s brisk replies to her caller seemed oddly at variance with her earlier volubility.
‘Yep?… Okey-dokey… Yeah… Gimme five… You’re kidding… Thanks.’
She turned back to me with an apologetic shrug.
‘Sorry to interrupt our little tête-à-tête, honey, but her downstairs is cracking the whip. Says my clients are starting to pile up, in danger of going a couple rounds with each other to weaken the opposition. Guess I’d better reduce the surplus population down there pronto. No point in ’em coming in for exercises and going out with broken bones!’
‘Indeed. But thanks, Lydia. You’re a breath of fresh air.’
‘Same goes for you, honey. You look after that body for me now, right? I’ve got designs on it!’
‘I’ll do my best!’
‘See you!’
There was indeed bedlam downstairs in the waiting room but I had no doubt one glance at Lydia’s imposing presence in the doorway would reduce the entire battalion to the docility of lambs.
29 JUNE—Lydia has injected something into my veins with those strong manipulating hands, I do declare. Power by osmosis!
I have this new energy. The exercises she introduced me to aren’t exactly ferocious but they do seem to suit my needs because I’m feeling much more relaxed and supple. Maybe it’s her sheer dynamism. Whatever her elixir, I like it!
30 JUNE—I was sitting in the conservatory today, reading. The words just wouldn’t penetrate the hailstorm of thoughts hammering inside my skull, and I found my eyes repeatedly straying outside. That’s a dangerous activity when the lawn needs mowing, and the borders need weeding, and the lobelia are crying out for transplanting.
But the real focus of my straying eyes was Naomi.
Bugger, bugger, bugger!
Just looking at her brought such tightness to my throat – knowing what’s ahead.
She was sitting in the pergola sewing. Snatching every ounce of sun. I’ve teased her often about coming out of hibernation in the summer months, but behind the teasing there’s a real worry. Skin cancer. Okay, she’s read all the literature and she’s got the right factor for every situation and I have to say her skin is pure golden brown, not a mark, not a blotch. She’s like these models you see in clothes magazines with an even tan everywhere, or those famous women who ooze pampered and purchased health after two weeks in an exclusive treatment centre, only hers comes from genetic inheritance and simple lotions and a balanced diet. And it’s an all-over perfection of tone and texture and colour. I say this as something of an authority. Between us we’ve examined every inch of it. On a pretty regular basis.
When I got to this point, I felt this sick lurch in my stomach. How long before there’s nobody to check the bits she can’t examine for herself? Curses! I will NOT cry!
She insists on making samplers for all her nieces and godchildren (three so far, a fourth on the way) and it’s always a race against time to get them ready for the due date – or as soon thereafter as name and date and gender are available. It’s something to do with demonstrating the joy of their arrivals compared with all the kids she places in foster homes and adoptive families, I think. Anyway, she’s determined to get the border of this one finished this week. So she was absorbed in her work and didn’t know I was watching her instead of reading the ghastly report some unknown hack, hyped as ‘our political editor’, had produced on a fracas in Westminster.
I want to capture that vision. Imprint her on my brain. The summer version. Her thick dark hair is glinting in the sun, a smooth drape from crown to nape. I secretly wish she’d let it grow long, as she had it when we met. I loved to feel it running through my fingers, watch her brushing it like a rich skein of silk. But she insists it’s an unruly thatch with a mind of its own that just doesn’t square with her busy life, so she keeps it cropped.
Occasionally she stretches and arches her back, stiff from her concentration on the fine stitches. The movement is almost feline. Her slim figure is supple in the close-fitting cropped top and chinos. Out of the blue I’m choked with regret for her childlessness. I will never watch that slender body expand to accommodate an unseen but growing fetus. I will never mop her exhausted brow as she labours to deliver my daughter. I will never watch her thin arms cradle my son, the small breasts swell to feed his voracious appetite.
Damn, damn, damn!
I see her wave through a sudden haze. The tears are for her loss as well as mine, a deprivation we’ve only skimmed so far. With the complete assurance of the naïve young, we had mapped out the template for our future: careers, childr
en (next year), pensions. We bargained without paying premature respects to death.
As if she feels my melancholy, Naomi drops her needlework on the seat and skips across the grass towards me. Cassandra, the mongrel cat who adopted us the week after we moved here, flies out from under her seat and, like a black bullet, vanishes into the shrubbery. I watch the ease of Naomi’s movements, the unthinking grace…
I can’t bear to think I must leave all this behind.
The text swam before Naomi’s eyes. How she had hated every step of the way as inch by inch the paralysis had robbed him of his mobility, eaten away at his muscles, encroached on his very ability to stay alive.
The heat of shame scalded her face. Had he known that sometimes the thought had slipped unbidden into her mind: would she one day find someone else to take his place? Someone else to father the children she wouldn’t have with him? She’d stamped on the thoughts instantly. She must not, would not, erase him.
Had he been aware that she hadn’t properly recognised his sense of loss? Had he suspected, discovered even, her terrible secret?
She dragged her mind away from the possibility.
‘One thing that this changes, Naomi, is having children,’ he’d said. His tone was matter-of-fact, his face expressionless.
‘Yes?’
‘We’ll need to talk about it at least.’
She’d not been able to think of a thing to say to bridge the gap.
‘Apparently I’ll still be able to – physically I mean, but we have to think of the future. For you. For the kid.’
Right to Die Page 5
