‘It’s not you, you duffer, it’s me. I have to concentrate so hard on my speech, I can’t even think about my non-verbals. But because I realise there’s such a potential for my gestures to be inappropriate, I have to work all the harder to express myself verbally. It’s a vicious circle.’
In her relief she failed to appreciate the enormity of this latest development for Adam himself. She even laughed sometimes when his unguarded words fell out in a muddle. If she had only known how it hurt him!
13 OCTOBER—I am a pigmy. I am a drain on the community. I am a leech, a philistine, a parasite. If she’d slung any of these insults at me, I think I’d have felt more robust than the quiet disappointment Lydia actually betrayed.
I’d been rehearsing excuses as to why I’d cancelled my last two appointments with her, trying to make them sound plausible but I was counting on her generous nature. I was so much looking forward to seeing this gloriously different woman who manages to roll physio, entertainer, counsellor and friend into one massively embracing person, and I was all set for a good laugh with her. She’s the sort of person whose essence I want to capture in one of my characters – Lydia herself permitting.
Sure enough, she greeted me with her usual ebullience, the rich Caribbean vibrations reverberating around me as she circled and approached in her inimitable way.
‘Why, if it ain’t my favourite Adam O’Neill. And there was me beginning to think you’d abandoned me for a skinnier model.’
‘Abandon you, Lydia? Never!’
‘Well, have you been slinking in here in a Trojan horse, man? Cos I sure ain’t seen you in here with my own two eyes.’
‘I’m sorry. I’m sorry. Mea culpa. But I’ve just been so busy. No reflection on you. You’re as wonderful as ever,’ I grovelled.
‘Flattery won’t get you back in my good books, Mister O. No, sirree! Nor yet excuses about any nose to any grindstone. I sure do recall telling you exercise in moderation, work in moderation, everything involving muscles in moderation, but nothing to excess.’
‘You did, Lydia, but it’s my boss you need to tell, not me. He doesn’t understand moderation. He doesn’t understand rest and recreation.’
‘And would that same boss know about the delicate state of your neurones, Mister O?’
‘Theoretically, yes. In reality, no.’
‘Meaning?’
‘I’ve told him. But he thinks it’s a form of rust due to laziness.’
‘And you have tried explaining the damage from running this finely tuned vehicle with a flat tyre, yeah?’
‘Well, not exactly…’
By this time she had me on the couch, on my back. Gripping alternate legs in her big black hands she moved them through angles and inclines that induced involuntary winces and sharp intakes of breath from me and brought a strangely set look to her face.
‘No indeedy. No, sirree! And this tyre? Flat like a pancake. Flat so’s to scrape the rim of the wheel on the ground! And the gears, they’re protesting when we try to speed up,’ she said, shaking her head mournfully. ‘Ah, Mister O, man. You ain’t taking this thing seriously. That’s why.’
She stopped her movements suddenly and leaned against the couch with her ample tummy soft and squidgy against my elbow, her own arms akimbo.
‘Now.’ She was suddenly seriously British again. ‘How many people have you told about your MND?’
‘Immediate family. My line manager – else I can’t get away for your pummelling. One pal at the office.’
‘Full stop?’
‘Full stop.’
‘And just how bad have you been since I saw you last? The truth now.’
‘Well…’ I closed my eyes and took big breaths. The words just point blank refused to come out.
‘Legs letting you down, honey?’ she asked gently.
‘Yep.’
‘Hands not gripping like they did?’
‘Yep.’
‘Speech fuzzy?’
‘Yep, occasionally.’ I kept my eyes screwed shut.
‘And you’re pushing yourself to compensate and cover up, yeah?’
I nodded.
‘Honey, you’re running towards a wheelchair the way you’re going right now.’
My eyes flew open and took their time focusing on the round black face.
‘I’m sorry.’ I heard the wobble in my voice myself, so I’m sure the perspicacious woman towering over me did too. I swear she can bore into my thoughts; reading my body language would be child’s play to her.
It was the Jamaican mamma who responded to my token apology.
‘Never mind sorry after the event. What you gonna do about it now? No point me swinging on the trapeze exercising these here legs of yours if you ain’t gonna do your share of this double act. The old NHS ain’t gonna like it. Dr Curtis ain’t gonna like it. And I daresay the little lady back at home ain’t gonna like it neither, huh?’
I couldn’t meet her gaze.
To my astonishment she suddenly patted my hand and said gruffly, ‘Hey, you’re still my favourite Adam O’Neill. I can see you’re done in. And for what it’s worth, I guess I’d run from it too, as long as I could hide. But… hey… it does hurt me inside to see you rushing into being an invalid ahead of your time. How about we do a deal, huh? I lay off the lecturing; you take better care of that beautiful body till I’m ready for it? I mean, you do know I’m saving myself for you now, right?’ She held out her big hand. ‘Deal?’
I gripped it hard to let her know I was grateful.
‘Now then, up you get, and just you take a gentle stroll on the old treadmill. Nothing I like better than shapely calves in black Lycra twinkling on the road to nowhere.’
As soon as I was safely established she mumbled something about needing to get a fresh supply of exercise sheets from downstairs and there I was, on my own, my feet slowly treading the rubber road, my brain struggling to regain control of my wayward emotions.
By the time she returned I was composed again and we kept up our customary banter as she took me through my paces. And in amongst the frivolity she spelled out the limits she wanted to impose.
Lydia has forced me to acknowledge that the slide is relentless. Whatever my facility in deluding myself, she wasn’t deceived for a moment. But it was her vivid picture of racing towards immobility that grabbed me by the throat.
My swim this evening was more worthy of a maiden aunt with a dodgy heart than my usual thrash. And when I got in I cancelled Saturday’s round of golf with Fred.
18 OCTOBER—I wasn’t surprised to see Dr Curtis today. Calling in on the off-chance, he said. Sent by Lydia, I filled in.
He took his time getting round to my health and mobility. How was I getting on with work and everything? Was I maybe needing a letter to explain things to my bosses? Time off?
I went along with the fiction. No, I was coping all right at the moment, thanks.
He’d brought a couple of research papers with him that reported new work on a promising drug regime. He wondered if, being a journalist, I might be interested to know the latest thinking. By some circuitous route he led into asking how I was sleeping. I told him the only thing keeping me awake was my novel and off he went on a discussion of how far I’d got, if I had an agent, recent bestsellers and the latest reviews.
I was caught off guard when he suddenly asked if I had noticed any change in my mood, depression, anxiety… I found myself sharing the dark moments. Before I had properly taken stock I was telling him about my father.
Whoever trained Curtis, trained him well, though I suspect you’ve got the knack or you haven’t. He has it, and then some. He makes you think he’s heard it all before, nothing shocks him and he pretty much knew that’s how you felt anyway, he just wanted you to tell him so yourself. Lots of people hearing about my father would look at me differently; not Curtis. He somehow gave me permission to handle things in my own way, just shout if he could be of any help.
When he’d gone I put the research
papers in my desk drawer without so much as a glance. He’d given me the reassurance I needed: my reactions were perfectly normal. At some future date I might try to analyse just how this guy operates, but for now I’m content just to savour the effect of his administrations. And hope Curtis outlives me!
Naomi smiled softly. Dr Curtis had indeed outlived his patient. And he’d been a true friend. He’d understood Adam’s need to preserve his identity, to be more than his illness, to make his own choices. And in that final act of friendship…
No, she mustn’t let her own knowledge of the ending distort Adam’s experience.
20 OCTOBER—Between them Curtis and Lydia – and Cassandra! – seem to have worked some kind of magic. I’m sleeping so much better. Somehow, just knowing they know, and having them on my side, is a real source of comfort. Help! I must watch that sentimentality doesn’t sneak out of the diary and spill over into real life.
Lydia assures me it’s not a crime to just ‘let it all hang loose’. So, I’ve decided, any sign of problems… nip the negative reactions in the bud and cue the relaxation techniques. My favourite so far is a tape of deep ocean sounds. Plus Cassandra.
Who knows? I might yet be persuaded down the yoga path. Imagine Harry’s face were he to find me meditating, or better still levitating, instead of gulping down the sixth draught of caffeine. It’d be worth the ritual humiliation from my colleagues just for that priceless vision.
29 OCTOBER—Thirty-nine today. An unexpectedly exciting day thanks to the digital camera Naomi gave me. I can see this might be my new obsession.
Obsession it had been at first. She’d felt a surge of relief watching Adam enthusiastically exploring the range and scope of his new toy, actively seeking new subjects, animated in discussion with his brother-in-law about pixels and lenses. Surely he wouldn’t be amassing skills and a large file of photos if he planned an imminent escape.
She glanced over at the poster-sized picture he’d taken of her in bed, bare shoulders, bare legs, brown against the white sheet draped discreetly over her body. Her expression said it all. She turned away. The bed, the nights… everything… it was all just so empty.
15 NOVEMBER—The novel is racing along. And my stash of photographs is mounting.
That chat with Lydia made me think again about telling folk and this week I felt robust enough to grasp the nettle.
It’s been a mixed blessing. Curiously, analysing people’s reactions has been interesting. I might even write something on that. *(Reactions – for Ideas folder) At work, I’ve run the gamut of everything from the instant tears of Wanda on Reception to a gruff, ‘Sorry, mate, shout if we can help,’ from the blokes in marketing.
Harry, of course, knew already. If the medical people get his body after death, I think they’ll find his heart is made out of meccano, and his brain surrounded by a semi-permeable membrane that keeps all human feeling out. The blighter is just waiting to pounce on any sign of weakness. If he can’t immediately see a fault in my work he’ll hark back to earlier causes for complaint (well, as he sees them) and project warnings for the future. It wouldn’t surprise me if he hasn’t got some young sycophant groomed to replace me before my seat is cold. (It has just occurred to me, though, that he must have respected my request that he keep the information to himself. I don’t believe all these folk were acting. A point in his favour. Whatever his motive.)
Fortunately the powers on high have been decent about it. Digby Arkwright, the chief, is a bumbling grandfatherly figure and comes in for a fair bit of ridicule among the troops, but when the chips are down he’s a fair-minded guy and believes in running a happy ship. Newspapers are in his blood – he’s the third generation with printers’ ink in his veins. He made kind noises about my track record which amounted to something along the lines of, you’ve more than proved yourself, we’re lucky to have someone of your calibre on board and if you need a bit of slack now, take it, there’s a job here as long as you want it. Stick that, Harry!
Outside of work I’ve had all kinds of responses too: from a kind of withdrawing as if I’ve got something contagious, through patronising pity, to a rush to do things to ‘spare me’. I feel like hanging a placard round my neck saying, I’m not deranged, I’m not incapable, I’m not infectious, I just need you to treat me normally. I’m only telling you so you’ll understand slight peculiarities in my gait or my speech or whatever.
And because Lydia recommended I did. I must remember to tell her why someone like me should not rush out of the closet.
3 DECEMBER—It was Naomi’s birthday yesterday. Thirty-six. And she still looks twenty-six. I couldn’t help wishing I could stop her biological clock. How long will it be before she meets someone else who’s fit and healthy and can give her a baby or two?
Naomi shuddered. She stared at the entry for a long moment before abruptly closing down Adam’s computer and going in search of comfort in the kitchen.
The nightmare was even more intense that night. This time she was in the well of a court of law. Serried ranks of lawyers were shaking their fists, baying for a return of the death penalty. But for once her mother-in-law was silent. Her smug expression said it all; the legal world was pronouncing verdict and sentence for her.
It was another two days before Naomi could face returning to Adam’s thoughts.
12 DECEMBER—I was supposed to see Devlin on Monday for my six-month check, but somebody from the hospital rang to say he was off sick and could I make another appointment for January. She said he specially wanted to see me himself. I’m not so self-deluded that I believe that, but it does help to know I’ll see him in person. I’m sure his henchmen are perfectly well able to put me through my paces and decide whether to give me a six-months or four-months appointment. After all, what does any of it matter to someone with a limited span like mine? But I’m vulnerable enough to think I stand the best chance seeing the top man himself.
I wonder what’s wrong with Devlin.
It’s hard to believe it’s six months since I got the news. Reality check: I’m still in a job. I’m still walking, still talking, still doing pretty much everything I want to do. And I’m six months further into my magnum opus. Put like that it feels positive.
17 DECEMBER—While other people are writing Christmas lists, I’ve started to compile a glossary of things people say alongside my private responses. Outwardly, I’m afraid, I’m still locked into the hypocrisy of polite social exchanges.
‘You can still lead a full life.’
Being in a wheelchair, struggling for breath, may seem full to you, pal, but I’ve known better and by my yardstick it stinks.
‘Your attitude will make all the difference.’
Why do people put the onus on me? If I deteriorate quickly, will that be a comment on my approach to life? If it’s legitimate for you to be fed up with trivia, why can’t I be frustrated by this major disaster?
‘Try not to worry about the future, we none of us know what it holds anyway.’
Maybe, but I know pretty much what mine looks like; you can still believe that on the law of averages you’ll have a reasonable lifespan and kids and a career and a pension.
‘Enjoy today. Think positively about what you can do, not what you can’t do.’
I’d like the feel of that if I said it myself; I hate it when other people in perfect health slug it to me.
‘Channel your energy into creating the best quality of life you can.’ Ditto.
‘It’s a good thing you don’t have kids.’
Now that is below the belt. I’d give a king’s ransom to have the assurance that something of me lived on after my death.
‘At least Naomi’s still young enough to start again.’
Start what? D’you think I haven’t recognised the fact that she’s young and attractive and desirable and ready for the next stage in her hormonal life? Do you have to tell me she’ll probably have kids with some other bloke? Do you?! Damn it, I want her to be happy with me! Have kids with me!
That’s one of the most patronising comments to date. It conjures up those Pollyannas who are paralysed from the neck down, or whose families are wiped out by a senseless act of terrorism, who go on record as saying they’re a better person for having tribulations in their lives. Ergo, they’re glad they’ve had these things happen to them. Give me a break! Goodness thrust upon you can’t be the same value as goodness you chose to cultivate, can it?
‘I see you’ve kept your sense of humour – that makes all the difference.’
I’m sure it helps you, but remember it costs me. Just because I’m poking fun at my own inebriated gait or my drunken slurring doesn’t mean I’m laughing on the inside. Sometimes it’s just a cover to defend myself from pity, or ridicule, or too much sympathy. Or it’s because if I don’t laugh I’ll slip below the surface and in all likelihood never come up for air again.
On a good day I can tell myself most of these things but if there’s one piece of advice I’d give to everybody about dealing with folk in trouble, it’s this: Never ever count their blessings for them, or exhort them to count them themselves. Contrarily I know if someone else commiserates with my plight, my instinctive response is along the lines of: Things could be a lot worse; and to focus on what I can do. But that’s my prerogative, no one else’s.
Naomi read the list a second time and Adam’s commentary three times.
How different things looked from the other side. How well he had captured the paradoxes. She too had hated the exhortations to be positive. But she hadn’t appreciated how much it had cost Adam to retain his light-hearted view of life. It had seemed simply an extension of the man she knew and loved. He had always been a raconteur, given to amusing quips, ready to see the funny side of situations and mock his own behaviour or mistakes. And even since the onset of his MND, fighting for balance, struggling for air, how often he had turned her tears to giggles, given her the courage to go on.
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