She had to smile. He’d always been impossible to shop with. By that stage his instability had made the expedition hazardous as well as protracted and he had settled for the first decent outfit he’d tried on.
It had been the last time they’d attempted to shop for his clothes together.
In spite of Aidan’s imminent demise, the experience of bringing the story to its natural conclusion is so stimulating I resent every necessity to do anything but write.
Naomi understands my preoccupation and has been using the time to clean out the storage in our house. Seeing all the stuff my mother left behind has propelled her, she says. I agree in principle but can’t bring myself to join in the ruthless purification – not right now at least. Perhaps it smacks too much of preparing for my departure. I don’t want to analyse it. Nothing must be allowed to deflect me from my creative flow.
I’m postponing sorting out Mother’s things, too. The financial and administrative kettles have to be kept on the boil but the dredging-of-memories stuff can wait for a less creative time.
30 JANUARY—I’m aware of a curious confusion in my emotional response to things. It’s perplexing for me never mind others. I keep finding myself tearful in mid-laughter. Or smiling at serious moments. And I don’t know why. Is it a feature of the MND? Or bereavement? Or anxiety about Joel? Or my ambivalence about life and death? I don’t know. Maybe all of the above. Maybe I’ll make an appointment to see Curtis.
31 JANUARY—Everyone was there. The food was excellent, the drink copious. Arkwright said too many flattering things for my self-control in my present fragile state, but I think I saved face by managing a fairly pithy and humorous response. People must have heard because they laughed in the right places. Unless those near enough to my half-power voice laughed and the rest laughed in sympathy.
The gift was a stroke of genius; a laptop with a device that allows you to punch in letters with pressure from a finger or a chin or whatever parts of the anatomy are connected to it. Apparently you can hire these things but as Arkwright said, the gang knew I’d wear any such gadget to death, so they thought buying me one of my own would save some other needy person an interminable wait, and the technical support chaps endless journeys out to fix an overheated machine.
Naomi tells me there was a moment of suspended animation as I removed the last layer of paper and revealed the contraption, but I can honestly say my delight was sincere. The reality is, I’m fully aware that my days of normal typing are limited but with this equipment there’s no reason why I must prematurely end my career. Arkwright quipped that both he and Harry would anticipate – nay, expect – a doubling of my output.
Tucked inside the gift tag envelope was an IOU for a couple of training sessions with an expert to master the unfamiliar techniques, and a generous cheque to pay for the electricity bills from ‘running the machine day and night’! I was suddenly overwhelmed by the generosity and compassion of my colleagues. Mercifully the marketing crew created an instant diversion with a scurrilous sketch taking off the life of a busy journalist.
During the break for coffee I looked around at the assembled crowd and decided I’ve been a lucky devil. I’ve enjoyed the stimulation of a fulfilling career, the camaraderie of like-minded friends and the support of a beautiful wife. My thoughts at this moment flip unbidden to that sad character in the fair-isle jumper. Who is there to acknowledge his heroism?
It had been a weighty responsibility, advising on the best gift. In her efforts to give Adam a reason to go on living she’d been torn between the computer and a cruise dated for months hence. In the end Digby Arkwright had chosen on the basis that no one could predict Adam’s physical state in the future; the cruise might become impossible but she had been all too conscious of the potential for Adam to interpret the computer as forcing the pace to invalidity. His delight had been such a relief. Digby had given her a conspiratorial thumbs-up from behind Adam’s chair.
Her eyes flickered back to the machine which had kept Adam communicating until the end. Silent now. Idle. But the size of the file still to be read told its own story.
This was his legacy.
12 FEBRUARY—This gadget has given me a whole new challenge. Dave from technical support is a great guy: wacky sense of humour, fund of know-how, endless patience. He can say the most blunt things about using this bizarre computer but his very matter-of-factness seems to take out the sting. In two sessions he taught me all I need to know and inched me into modifying my techniques. He’s bet against my achieving my target by the end of the month, reckons the novelty will soon wear off. I’ll show him! I’m practising for half an hour a day minimum.
Later I’m down to the last container of Mother’s possessions. So far all I’ve salvaged are two small shoe-boxes of bits and pieces, one for Joel, one for me – saved merely for old time’s sake. Joel shrugged his shoulders when I asked him if there was anything in particular he wanted; he couldn’t name a single thing. But somewhere just out of reach, he must be aware that he’ll soon inherit the rest of the things I couldn’t bring myself to part with anyway.
13 FEBRUARY—Toni with an ‘i’ rang again today. She seemed to believe my excuse for not having got in touch – my mother would turn in her grave knowing I’d used her death for such a purpose. But not even my new selfish self could deflect all the dates she offered.
My MND has just jumped up and hit me on the nose. I’m bloodied but not crushed. It was the unexpectedness of the attack that winded me.
I guess my mother’s never far from my thoughts at the moment, so it probably wasn’t surprising that the cascade of magazines and papers in one corner of the room reproached me in her tone of voice. One can’t argue with the dead. I decided on a blitz, to be followed by an excursion to the recycling bin.
Mother was right: most of it hadn’t been worth keeping. But one article grabbed me by the windpipe. An experimental treatment by a Chinese doctor, using fetal tissue. And one of his patients had ALS.
The reporter spoke of dramatic changes; the patient walking, talking, eating. Dancing even! The photos showed his happy face as he jived, arms raised above his head, no trace of support.
The breakfast marmalade is tangy on my tongue, the coffee fragrant to my nostrils, again.
But just as suddenly, the sceptical newshound robbed me of my appetite. The improvement after the transplant was short-lived – weeks only – before deterioration resumed with a vengeance. Imagine tasting a reprieve only to have it all cruelly snatched away, the accelerated pace of the degeneration collapsing months into hours. And on top of it all, the guilt for using aborted material.
The integrity of the experimentation is also in question. Why was the doctor unwilling to open his work to independent academic scrutiny? Was he really injecting fetal cells – or snake oil? I am disturbed by the idea of those illegitimate cells circulating in one’s body. Of course, my journalistic mind leaps in with a caveat: why not? There’s no shortage of such material in China. Their compulsory abortion programme ensures that. You wouldn’t be altering the fate of those unborn Chinese children by so much as one iota with your conscientious objection.
But… in the privacy of my diary I can confess that emotion over-rules logic in this instance. Were I to allow myself to benefit from those lost lives, I would be condoning the destruction that made it possible. Morally suspect. Have I after all inherited something of Mother’s illogical principles? That thought is as sobering as my revulsion at the antics of the renegade doctor.
I shared this depressing possibility with Naomi when she joined me but her reaction added another layer of confusion. For the first time I caught a glimpse of her suppressed mourning for my mother. I rushed away from the void left by my parent and into a diatribe against senseless abortion and the Chinese birth-control laws, but she was too upset to stay in the room. I let her go. We all need our space.
Adam had had no suspicion as to the real source of her distress. The desolation of her own double loss was so ac
ute she switched off the machine. Would this rawness ever heal? Would it have been easier sharing the decision with him? Would it have been fairer?
Stella had tried to tell her that guilt was a woman’s constant bed-fellow. The deed was done, and regret would still plague her even if she shared the knowledge with Adam. But the doubts lingered.
14 FEBRUARY—It took every ounce of my strength to be up and dressed before Naomi this morning. But my maternal inheritance of sheer bloody-minded determination stood me in good stead, and Naomi had the day off, so no pressure.
The art of carrying a tray of breakfast upstairs complete with the obligatory if unimaginative red rose has slithered into a distant memory, only mildly regretted. But, though I say it myself, the table looked creditable, the menu tempting, the small gift (impeccably wrapped, but by the jeweller’s assistant, sad to say) tantalising.
Naomi oozed suspicion as she stuck her head around the door.
‘What are you up to in there?’
‘Courting the girl of my dreams on Valentine’s Day. What else?’
I insisted she had to finish breakfast before she opened the parcel. She’s too close to the edge these days to tolerate anything too sentimental. But she trumped my tactics by declaring that she had a surprise in store for me too – after breakfast.
The simple silver locket awaiting a tiny photograph spoke for itself. There was so much I wanted to say, so much I couldn’t bring myself to put into words.
Naomi kept me dangling for her surprise through an ungainly scramble into warm clothes, and the whole of the car drive until we reached the canal. Not only had she booked us a trip up the water, but she’d arranged lunch on board. And best of all, Joel for company.
‘A gooseberry at the party? Not my idea of romantic, let me hasten to reassure you!’ he grinned. ‘But she insisted.’
‘Perfect,’ was all I said, muffled by his enormous bear hug.
His presence lifted our spirits immeasurably. Even now, sitting here at night recording it, I can’t help but smile at his irrepressible sense of the ridiculous. Nothing was outside his boundaries. In his hands even my disabilities were open to mockery. And gradually I felt my own caution melt in the warmth of his easy affection.
‘Shouldn’t you be with Paige, today of all days?’ I ventured at one point.
‘Trying to get rid of me already?’ he countered. ‘Cramping your style, huh?’
‘Not at all. It’s just – well, it is the 14th of February.’
‘Of no significance whatever in the rarefied world of high finance.’
‘Meaning?’
‘The said Paige, lately a fully paid up awl-through-the-ear servant to the masters of the money-spinning fraternity has been dragged kicking and screaming to Paris for the weekend – by her extremely wealthy boss.’ His face was turned away.
‘Oh.’
‘A whole weekend. In Paris. For Valentine’s Day. No expense spared. I mean… How can one compete?’
‘I’m sorry. I didn’t know.’
‘Of course, she says it’s just some boring old financial conference. What kind of a sucker does she take me for?’
‘Well, if she’s that kind of a girl, maybe…’
I broke off at his affronted look.
‘Adam Willoughby O’Neill! You were about to say, “You’re better off without her”, or some such pious claptrap. Will you listen to yourself? Shades of Mother and no mistake!’
I felt the colour rise. He was spot on.
‘I was winding you up, idiot. Yes, she’s in Paris. Yes, she’s with her boss. But the guy’s a happily-married grandfather of six. And I’ve seen the programme for what has to be the dullest day ever invented. She has to report on it at the next team briefing.’
‘Okay. Okay. Okay. I retract every shred of sympathy.’
‘Well, I think it’s sweet of you to care about how Paige feels,’ Naomi soothed.
I’m saving my reward till later.
Joel had indeed transformed the occasion. Not only had he brought new topics of conversation and a bright, uncluttered attitude, but he’d been a strong and safe pair of hands in manoeuvring Adam on and off the boat; hands to which his brother would take no exception.
In the weeks after Mavis’s death and Adam’s retirement, it had been sobering to realise how quickly things were moving beyond her strength. Joel had helped to gloss over the slippage. But later, once Adam was in bed, Joel had raged against the devastation of his illness. Naomi had been taken aback by the vehemence of his outburst. The ongoing strain was taking a heavy toll of them all.
15 FEBRUARY—Joel and I spent one last hour in Mother’s house today. Together.
It still smells of new paint and carpet and our reminiscences felt curiously disembodied in the revamped modern emptiness stripped of the familiar. Our family ghosts had packed their bags and departed. Nevertheless it was a weird feeling locking that door for the last time, knowing memories of our childhood, our adolescence, our parents, would henceforth be homeless. I’m glad Joel was with me.
The ‘For Sale’ sign goes up tomorrow. Most of the proceeds will go to him. He should be able to upgrade quite substantially. In spite of our combined protestations, Naomi refuses categorically to gain considerably from her mother-in-law’s death. She even said that people might suspect she’d got rid of me to capitalise on my assets. Naomi!
Joel met the MND nurse, Toni with an ‘i’, in the afternoon. It was comforting to do a wholesale assassination of the woman with him after thirty minutes of her condescending suggestions on how to improve my life. I wonder: does Curtis know what she’s like? Dare I say I don’t want her back? I rather suspect she is at this very moment compiling a sad report: ‘still in denial’, ‘unaware of the implications of his disease’, ‘resisting assistance’.
I refuse to tick her damned boxes.
17 FEBRUARY—Joel’s gone again. The house feels so silent without him. But their plotting and scheming behind the scenes to organise events bodes well. Joel will be there for Naomi – later. They’ll help each other. It’s some small consolation. Paradoxically, I already feel excluded. They share things, they need each other – because of me.
I must focus elsewhere.
Ahhah! A deadline to be met: a talk for the area MND meeting, as ‘one of those who is dealing with it healthily’ according to the branch president. Says who?
Later I’ve jotted down six points I want to cover, put in prompts for funny stories against myself, drawn up a positive take-home message. Bit like writing a sermon, huh?
Excellent therapy.
19 FEBRUARY—The president was embarrassingly fulsome in her introduction tonight. It gave me exactly the right opportunity to say, ‘If my late father had been here, he’d have been so proud. If my mother had been here, she’d have believed it!’ Straight out of the repertoire of The Moral Maze’s David Cook. Sorry, David, I didn’t attribute it tonight.
They were kind. Nobody pushed me beyond my limits. I just wasn’t prepared for the effect of facing so many fellow MND travellers – in every shade of ungainliness and immobility short of end-stage paralysis. Or the weariness and resignation in their carers short of end-stage despair.
Leaning on the adjustable podium, addressing them, was like gazing into a crystal ball at my own future. Lament, regret, self-pity – all superfluous. These people all knew. The wrestle for coherence, the determination to stay in control, the endless battle with hopelessness; they’ve all been there. I’m simply the new kid on the block.
Curiously, it was the relatives who cut through my defences more sharply. Their perceptive questions, their grit, their very presence given the burden of every day, caught at something deeply visceral. Naomi’s lot, writ large. Can I allow this to happen to her life? More than once I had to consciously drag my thoughts into the present moment.
Suddenly I found myself sharing the story of my arrogant dismissal of Lieutenant Colonel Grant-Hartwood’s request, and the humbling experience of atten
ding his funeral. I knew his legacy was more eloquent than anything I might personally offer.
It was strangely healing to confess so publicly.
And it sealed my fate. I moved from being invited guest to part of the family.
All in all, I’m glad I finally went into that hall of mirrors. My so-called celebrity fades into insignificance alongside the unsung achievements of so many in the audience tonight, but I’m lucky; I have so many advantages. I couldn’t endure regular meetings but tonight’s encounter has been salutary.
Adam had returned home in the taxi the Association provided, a subdued and pensive man. He’d described the occasion in unusual detail but said little about his part in the evening, concentrating instead on the courage of the people he’d met. Two things on the following day gave Naomi some insight into his performance. The local paper ran a report on the meeting, paying tribute to his ‘moving and eloquent’ address, quoting him extensively. And a brief item on the local radio news next morning had included a couple of sentences of his actual talk. The shock of hearing his slurred speech and sharp intakes of breath, somehow exaggerated by the medium of the wireless, had made her sneak a look at Adam. He gave no indication of noticing at the time but a fortnight later he casually told her he’d decided to see the Speech and Language Therapist.
At last.
20 FEBRUARY—Lydia was in splendid form today. Almost back to her old self – on the outside anyway. She gives me hope that Naomi too, will find solace in work.
21 FEBRUARY—I’m still trying to persuade Naomi to have help.
‘Me? No! I’m far too untidy to have a cleaning lady.’ The old joke, misfiring now.
‘But you could do with help, yes? Soonish anyway. Now Mum’s gone. And things not getting any easier.’
‘Could I? Are you casting nasturtiums on my standards again, Mr Pernickity?’
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