Unexpectedly, into her mind came a vivid picture of Adam on the phone. It was early on in the history of the disease. Still able-bodied, still perfectly coherent, he’d suddenly crossed his eyes and started to writhe absurdly, his limbs as well as his face grossly contorted, one quavering finger stabbing at a button on her cardigan. But to the caller he would sound perfectly lucid and reasonable, thanking them for their kind offer to be put in touch with someone who dealt in communication aids for stroke victims. But what had been going on behind that merriment?
And now that laughter had gone out of her life. She missed it every day. A sense of humour did make a difference. He had made the difference. Now the onus was on her, she couldn’t seem to summon up the strength to take up his mantle and put the lightness back into her situation. What blessings were there to count now?
19 DECEMBER—Contradictions seem to be multiplying with the awesome speed of rabbits these days.
I want information but I don’t want to know more than I have to. Logically I can’t defend this. For goodness’ sake, I’m a trained investigator; I’m a professional snoop. I’m pathologically nosey. It’s instinctive as well as learned. Why am I bucking the trend now?
I tell myself to just accept what I can do today, to be grateful I’m still functioning, and to work at keeping the ‘I’ in MIND, but all too frequently I find myself looking back at the me I was before this disease first clenched its fingertips into my left leg. Why is my brain rebelling so against my best intentions?
I’m also bothered about how people are perceiving me now. Annoying. What does it matter what they think? It shouldn’t if I’m secure in myself. But somehow it does. It reminds me of a thought I’ve sometimes had at the funerals of old people. To many of the mourners this person was only ever bent and slow. I want the eulogy to capture the vital character they once were. I rather like the practice of having a photograph of the young version – pretty girl, happy father, successful career woman or whatever – on the front of the order of service to remind people.
In my case, although I won’t be old, there will be people at my funeral who never knew the me I was even at the beginning of this year. For some of my older acquaintances the most abiding memories will be of my incapacity. I might add something to my ‘wishes for after my death’ file tonight. They might make some mention of my athletic abilities, my physical achievements, as well as the mental ones.
And maybe that’s a good-enough reason to hang on to my older friends and acquaintances. It’s tempting to immerse myself in the world of the disabled, cut the ties that bind me so unequally to the former yardsticks for success. Only people whose own horizons are limited would understand the excitement of getting through a day without an accident, the satisfaction of being understood without repeating myself.
What a mercy she had opened that folder ‘Wishes for after my death’.
The photo she’d chosen showed Adam climbing in Snowdonia, tanned and triumphant. In reality there had been no need of such a visual display of his strength. All the old friends had clung to their memories – so many cards, so many letters, so many verbal exchanges, had dwelt on the good times.
‘They hadn’t forgotten, Adam. You should have heard them. If they didn’t talk to you about the good times, that was only because they didn’t want to remind you of what you’d lost.’
Indeed their sadness was the deeper just because he belonged more to the mountains than the wheelchair.
Those friends he had accumulated in his uneasy sojourn in the world of disability reached out in genuine sympathy too, knowing the horror of so many gathering shades of death, during the long drawn out goodbye. They too had climbed their own mountains.
She’d read and re-read the messages – she’d stopped counting after two hundred – that had come to her since that terrible day when she’d opened his death instructions. Not one, not even Harry’s condolences, had diminished the real Adam, the man inside the demolition site.
24 DECEMBER—Outside it’s Christmas Eve. For some reason I can’t analyse, this makes me feel incredibly sad.
I’ll go and collect some more cones for the fire tomorrow. Christmas is one of the few times we light the big open fire in the sitting room. My mother will doubtless make a comment about the danger of sparks. Naomi’s parents will glance at her but say nothing. And I’ll just ignore it and throw on more for good measure.
Roll on 27 December when normality returns.
27 DECEMBER—Nobody warned me Joel was coming. I still don’t know whose idea it was to keep it as a surprise or why. Everybody else knew. I’m sure they meant well, but I’m not a child who needs surprises. I’m not at death’s door, anxious to say my last goodbyes.
Joel, of course, made the whole thing into a joke. When my mother arrived she just pecked me on the cheek and walked on past me, her ‘Happy Christmas’ trailing behind her. I was about to close the door when there was an explosion of sound and colour. The shrill of three party blowers inches from my face preceded: ‘Felicitations, big brother! Joyeux Noël. Froehliche Weihnacten. God Jul. Buon Natale. Glaedelig Jul. Boas Festas. Felix Navidad. And whatever else this pagan festival might offer to gladden your cardiac muscles.’
Christmas instantly took on a different complexion. Joel evened up the balance of the generations and the house lit up with merriment.
In a way I think I’ve always envied my young brother his light-hearted approach to life. Being five years my junior, he was largely protected from the worst excesses of Dad’s violence and depression, and around the time of his suicide Joel lived with our grandparents more than he lived at home. I always got the impression that Mother favoured him (although Joel’s perception is of a distant neurotic figure who couldn’t wait to hustle him off to her parents). I was exhorted to be the responsible one, the man of the house; he was free to indulge in childhood folly. Even after we’d grown up I felt a sense of obligation to stay near enough to help Mother with tax bills, the beech hedge, repair jobs around the house; Joel seemed to see no moral duty beyond an occasional postcard or phone call and came home only to be waited on hand and foot, and even thanked for coming. Like the biblical elder brother, I resented the prodigal’s reception, but unlike him I couldn’t find it in my heart to do anything but rejoice in his occasional reappearances.
When I’d phoned Joel to tell him about my MND he’d been uncharacteristically silent.
I reassured him I could still do everything I’d always done and I had no intention of letting this thing beat me, so he needn’t think for one moment he’d be able to take advantage of my disability or that sudden inheritance would allow him to live a life of indolence in the near future.
‘Disabled? You’re disabled?’ His voice had sounded odd.
‘No. Not in the way you’re thinking. I just wanted you to hear from me in person before other people put their own slant on things.’ For other people, read Mother.
Fortunately, over Christmas, I wasn’t pushing myself and I doubt whether Joel would have detected anything out of the ordinary. But I took precautions just in case. I passed the wine to him to pour, admonishing him to ‘earn his keep’. I used the trolley to remove the dishes, joking about the extra load he created. When he suggested a walk after lunch, I was mockingly indignant that he might be free as a bird but I had responsibilities to my other guests. Ahhhh. Writing this I see I was colluding in the pretence, treating Joel as the kid to be shielded. Joel, who’s almost the same age as Naomi – and what protection has she got?
Anyway, Naomi instantly came to my rescue here and suggested Trivial Pursuit instead. Her parents have great general knowledge, my mother hogged all the Bible and Natural History questions, so the older generation certainly gave us a run for our money. In spite of Joel’s scurrilous remarks about how easy their questions were, it pleased me to see a dawning respect for his worthy opponents.
Naomi’s dad is an ardent royalist. Old school. Stands to attention when he hears the National Anthem, even in hi
s own home. So of course, The Queen was essential viewing. We used the opportunity to clear up the debris in the dining room and when we next checked, all three of the parents were dozing in their chairs to the lullaby of some perennial film.
I wasn’t even thinking about my illness, so Joel’s sudden reference to it caught me off guard.
‘Can I give you something – you know, nerves, stem cells, whatever? Anything to stop this thing getting you.’
I stared at him blankly.
‘Have I said something stupid?’ he shot out quickly.
‘No. You just took me by surprise. I wasn’t expecting…’
‘You weren’t expecting your ramshackle kid brother to have the odd spark of decency in him, eh?’
‘No, you know I don’t mean that. I wasn’t even thinking of the MND. But… thanks, Joel. That’s quite something.’
‘I want to help. Can I? Is there anything?’
‘Short of a miracle, I think not. Good of you to offer but it isn’t something that you can donate, nice as the idea is.’
‘What can I do then?’
‘At this moment, just be yourself. You’ve turned this Christmas around just by being here. I don’t know who set it up but I’m so pleased you came.’
Naomi came back into the kitchen and added her endorsement.
‘Amen to that! It’s brilliant having you here, Joel. And thanks to your misspent youth, your knowledge of pop music and forbidden films gave us the edge with Trivial Pursuit.’
Levity returned and Joel made no further reference to the MND. I didn’t want to let it intrude into this good time but that one remark has made me realise that I have to think of the wider family. Joel may seem like a self-centred, independent guy, but if I’m not here, will he feel more responsibility for Mother? Will he feel guilty if he thinks he hasn’t done his bit for me? I must talk to him sometime.
Memories of that Christmas sparkled across Naomi’s mind. It had been Joel’s idea to catch his brother unawares.
For her, a bigger surprise had been the change in her madcap brother-in-law since the diagnosis. On her recommendation he’d kept up an outward show of crazy unpredictability in front of Adam; behind the scenes he’d proved an unexpectedly mature and sensitive support to her. He knew intuitively how to amuse his brother. He made it his business to learn how to work within Adam’s boundaries. She found she could relax, relying on his boundless wit.
The prospect of the festive season had oppressed her. The forced conversation of ill-assorted parents, the strain of too much inactivity, her own hyper-sensitivity to any reference to the future, the risk of nostalgia – everything held peril. Joel’s gaiety had transformed the whole scenario for everyone.
31 DECEMBER—I’ve never been one for superstitious nonsense about the New Year but tonight I have to admit to chaos in the emotional department. There’s a weird sense of a chapter of my life closing. It’s the end of the era of wellness.
I was about to say this is a year that will be etched in my memory for ever, but given the expected length of my life that’s not much of a statement. This time last year I was a perfectly ordinary bloke, hurtling through the months with nothing much more to worry about than paying the bills on time and the slow leak in the roof over the smallest bedroom. Oh, and coping with Harry’s foul moods and impossible deadlines. As 2006 draws to a close I’m more preoccupied with how long I shall be able to keep any money coming in and just when would be the right time to move to a single-storey house, or whether we should adapt the downstairs of this place. And occasionally, whether I’ll hang around that long.
Naomi’s the real reason for my melancholy. I’ve always accepted that I neglect her shamefully – what with my frequent absences and my crazy work schedule. But today I’m sick with worry about my presence. How will she cope with my disintegration? Would my permanent absence be kinder?
She’s in the sitting room on her own right now, watching something mindless on the box, working on her cross-stitch. I had to make a pretence of having to scribble ideas for the novel down while they were fresh. It’s like a physical pain looking at her and thinking what I’m thinking vis-à-vis endings. I’m too close to tears for listening to anything sentimental or loving. So I’ve come in here to let it out in this diary and get a grip before we toast ourselves and welcome in a New Year.
What exactly am I welcoming? It’s too grim to contemplate. Maybe once we’re safely into January I’ll find the courage but tonight I want to just shut all the doors, secure all the windows, and ignore everything except the fact that she’s here with me and I’m still able to be almost everything to and with her that we were this time last year.
I need some strong diversion therapy, so I’m going to write a bright and stimulating section of my novel: Aidan is composing a satirical piece about New Year resolutions. Hopefully the buzz from that’ll get me through being alone with Naomi for the transition to next year. A year ago I’d have revelled in the prospect of the two of us snuggling up. Tonight I’m struggling. But I will find the right degree of enthusiasm. I will find the humour to deflect the sadness. I will metamorphose into the seductive lover. I WILL!
The memories of Adam’s lively repartee, his normality, flooded through her mind with a poignancy that constricted her throat and brought stinging tears to her eyes now. There had been no hint of his struggle.
1 JANUARY 2007—I wish I had the words to capture how I feel about Naomi. I think I appreciated the enormous importance and strength of our relationship more last night than I’ve ever done. That, of course, was partly what was threatening my control.
I think – hope! – I managed to equip myself creditably in the thespian stakes. I made sure I kept control of what we talked about around midnight, steering the chat into silly territory as soon as the bells and the first kiss were out of the way. If she was disappointed that I wasn’t more sloppy or sentimental, she didn’t show it. And we made up for it in bed.
But I’m not going to jeopardise the precarious state of my emotions by being introspective, even in this diary in the cold light of day, so I’m off to suggest a tramp along the river – surely even Lydia would grant me that little reward for my efforts of yesterday.
3 JANUARY—Being back within the orbit of Harry’s malign tongue seems particularly lowering this year. January ought to signal a new start but Harry shows no sign of change – unless it’s to be even more cussed than before. He actually ripped my latest offering to shreds and tossed it back to me – electronically – with a blistering message: ‘If this is the best you can do, suggest you spend the day drafting a letter to DA.’ But as I’ve said there ain’t no way Harry is driving me to resign. So I sat right down and wrote a piece on bullying in the workplace. If he recognised himself he gave no hint of it, but like I say, the guy’s made of meccano.
10 JANUARY—I’ve finally summoned the courage to send for a pack of information from the Motor Neurone Disease Association and it arrived today. Prompt service.
It’s neatly packaged information, well-ordered and easily accessed. But instantly it’s in-your-face. For a kick off it calls itself ‘Your personal guide’. Hmmm. Not the tone I’m personally looking for. And then – for goodness’ sake! – the fastener’s stuck with Velcro! They might as well put in a voucher for money off a pack of incontinence pads. I had to force myself through the first stages of the process. I actually pencilled in ‘im’ in front of the lurid ‘personal’ sticker. Then I took the green felt monster that came free with a cereal packet and slammed it onto one side of that vile Velcro fastener. Thumbing my nose at its significance.
I skimmed over the pages that invited me to record my own details, gritting my teeth by this stage. It smelt like a primary kid’s jotter! Shall I hang my apron on this peg, Miss? And please may I colour in the boxes? But then, mercifully, there was a section on information about the disease itself. Just facts. Facts any journalist trying to find out about it would want to see.
Apparently only two
people in every hundred thousand get MND. Pretty uncommon by any standards. You’re almost bound to ask, why me? It’s like seeing one of those old sepia photos where someone is ringed because otherwise you’d never recognise them. Was I ringed from birth? If I’d dodged behind the rows of folk and poked my grinning face up somewhere else would the mantle have fallen on some other poor sod? I have this sudden picture of a giant hand whirling out of heaven selecting me: It’s for You-hoo! Only this lottery isn’t worth a single, solitary dime.
It seems that death by MND is faster than death by MS so there are less people with MND at any time even though the incidence of both diseases is approximately the same. I haven’t decided yet if that’s the short or the long straw.
It’s rarely familial; only five to ten per cent of cases. I’ve never heard of anyone else in the family with it, and anyway I’ve been told mine isn’t that kind. There are implications there – especially with the inherited variety – but I don’t want to look at them yet.
Sufficient unto the day, as the Good Book says.
And my mother.
The thought ricocheted in her head.
‘You have to be thankful it isn’t the genetic type, Naomi. Imagine knowing your kids might have inherited it too.’
Naomi felt again the surge of rage she’d experienced the first time she heard those words from her cousin.
‘Thankful? Thankful?’ she’d exploded. ‘Just remind me again how lucky we are that Adam’s got this thing, will you?’
‘I didn’t mean that. You know I didn’t. I’m only saying…’ Dorothy stammered.
‘Yeah, yeah, yeah. It could have been worse. I wish I had a pound for every blessing I’ve been told to count since you all knew about Adam.’
At least Dorothy had the grace to look chastened.
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