At some point I’ll probably give up the journalistic stuff and concentrate on the fiction. From a mental health point of view this option would be therapeutic. When I’m in tandem with a character, thinking their thoughts, accompanying them through assorted experiences, I’m energised and gloriously free from the shackles of my disease. But would this count as being able to work?
While I’m still capable of combining the novel with the bread-and-butter work, I’m loath to forfeit my regular salary. The royalties won’t be realised for some time – perhaps not even in my lifetime. And when you work out how long it takes from conception to publication, they wouldn’t equate to a decent salary.
Filling in these triplicated forms, my instinct is to state what I can do on my best day. CVs, job applications, appraisals – we’re taught to show our shiny side. But when it comes to establishing my disability, I’m supposed to base my assessment on the worst days. It goes totally against every grain. In the Spartan School of Unsung Heroes, the monumental effort you make to achieve something is your private challenge and success, not to be paraded. Alien territory.
10 DECEMBER—I had to go into town today to meet a guy who’s thinking of joining our firm. Arkwright asked me if I could manage it. He wanted somebody who’d give a fair account of life ‘at the sharp edge’, who could impress him with long service, commitment, success – that kind of thing. Flattery got him what he wanted.
I should have realised that this close to Christmas, the city centre would be mobbed. Squirreled away in the suburbs, that kind of reality rarely impinges on my experience.
It’s curious how little notice we take of other people’s activities when we’re part of that surge of humanity ourselves. But today I envied Moses: I wanted to be able to stretch out my hand and have the sea of pounding flesh part before me, the queues dissolve, the uneven pavements smooth out to ease my passage.
No miracles being on offer, I staggered haphazardly through the uncaring multitudes, fuming variously at the obstacles, the lack of consideration, the poor design, the wanton carelessness. Oh to be the undisputed centre of the universe!
It was a minor triumph to stagger into Brown’s restaurant on time.
Colin Coleman was nothing like my mental picture. He was easily six foot five; not five nine. His thatch of black wire was much more striking than the slicked-down mouse I’d sketched in. The wide film-star smile oozed a confidence that belied the grovelling deference I’d anticipated. A nice line in smart-casual showed he knew the ways of the world and my last advantage vanished as he declared himself pleased to meet me, with not so much as a flicker in the direction of my sticks. Maybe his assurance comes from a lifetime of taunting about the colour of his skin. Somehow, in his hands, black is dominant without being aggressive.
He is exactly what the place needs. There’ll be no succumbing to Harry’s bullying tactics in that quarter, I’ll be bound. And the more he talked, the more I liked him.
I only wish I could be around to see him rise to fame and fortune over Harry’s dead body!
The receptionist at Curtis’s surgery left a message. The nurse is coming the day after tomorrow. Hmmmm. Childishly, I wish I hadn’t rung back to arrange a date.
11 DECEMBER—Maybe it’s foolish, maybe it’s a reaction to yesterday, but today I booked an Easter break in Madeira. It’s a place with fantastic memories for me. Naomi’s never been. I want her to experience it with me. While I can still move.
It was a spur of the moment decision, triggered initially by an obituary, of all things. The name jumped out at me. There was a picture of a portly man with a chestful of medals standing to attention during some major national event, but it didn’t ring any bells (not surprising, given that I’ve never met the man). But the name… ahh, that stirred something.
Grant-Hartwood. Lieutenant Colonel Gerald Ronald Stevenson Grant-Hartwood. Second son of the Duke of somewhere I’ve never heard of. Educated at Eton and Oxford. Trained at Sandhurst. Distinguished military career. Awarded the DSO in 1945, a CBE in 1968. Latterly Chairman of the local MND Association where he ‘worked tirelessly until his sudden and unexpected death on Tuesday evening’. It’s only Thursday now – this tribute must have been already prepared. They only do that for well-known figures. And these were the credentials of the man who wrote extolling my celebrity!… a nonenity from a newspaper. Whose invitation I turned down on the basis of my own speculation. Because I thought he had no right to involve me. He had every right.
‘Diagnosed with a rapid form of Motor Neurone Disease in 2006’ it seems he wasted no time in idle regret but used his contacts, his leadership skills, his assets, to raise the profile of the disease. He was an ardent campaigner for stem cell research and generated thousands of pounds for the cause from his innovative fund-raising activities, even abseiling down a rock-face himself weeks after he began using a wheelchair.
I was left staring at that rotund figure for an age. How did he die? Why was his death ‘sudden and unexpected’? My churlishness in the face of his valour chastens me. He used none of his many levers to persuade me.
The memorial service/funeral is on Thursday week at 12 noon. It’s to be a thanksgiving for his life.
He has left behind a wife, Lady Dorothy; two sons, two daughters and eleven grandchildren. Even on that level I am a pigmy by comparison.
Donations in lieu of flowers to MND research.
12 DECEMBER—I rang the local branch of the Scottish MND Association today. I explained about the letter from their late Director-Chairman. Would they still be interested in my visiting their group?
They were polite but cagey. Lieutenant Colonel Grant-Hartwood’s sudden death had thrown everything into confusion, they said. Could they get back to me in the New Year? But if I wanted someone to come and talk about my MND… perhaps someone else with the disease? I repeated my sympathy and put the phone down quietly. They just don’t give up. I feel insensitive for troubling them in their grief.
I was still feeling low when the nurse came. Toni Wagstaffe. Toni with an ‘i’. Short for Antoinette apparently.
‘So no relation to the ex-prime minister,’ I said.
Pearls before swine.
Granted I was inwardly rebelling against the necessity to have this person in my home, assessing my needs, ‘establishing my baseline’!… but I’m sure it wasn’t just that causing me to switch off to this woman, Toni with an ‘i’. If I had to write her appraisal after this one encounter I’d sum it up as: needs to lose that patronising manner; needs to develop a sense of humour; needs to thaw out. I do not want to be part of her community disability team, thank you very much. Wavelengths matter.
I postponed all her suggestions. Maybe some rich Arabian Sultan will entice her to go to warmer climes and condescend somewhere else before she remembers to contact me again.
14 DECEMBER—Sally and Matthew invited us to their house yesterday for a pre-Christmas celebration. Anabelle and Courtney put on a little play. They fluffed their words and had a minor disagreement backstage midway through a key scene, but everyone applauded vigorously and shouted, ‘Encore!’, as instructed. The encore consisted of a song about an angel visiting a child on Christmas Eve. Naomi wasn’t the only one dabbing eyes when the lights were dimmed. I must talk to Curtis once things quieten down after New Year.
It was too much. She reached out and let her fingers touch the words lightly as if she could connect with his longing. Even then, when he was staggering around, unable to stand unsupported, his speech ravaged by the disease, even then he had clung to the hope of fatherhood. And she, unaware, had conspired to deny him that fulfilment, her only ambition to be strong for him until the end. What if she had known what he was thinking…? What if…?
17 DECEMBER—Aidan is struggling with his speech now, and after a full day of telling his story I’m completely drained. A real sense of urgency is propelling me. If Grant-Hartwood with all his advantages can die ‘suddenly’ then… Well, I’d like to be prepared as he
seems to have been.
20 DECEMBER—For the first time I am brought face to face with the harshness of a death in December. The presents are probably already bought, the cards signed: Mum and Dad, Grandpa and Grandma, Gerald and Dorothy, Lieutenant Colonel and Lady. Festivity all around, sadness within.
When I arrive, by taxi to avoid unseemly delays and difficulties, there are only a handful of people already in their seats in the aisles. Wheelchair seats. By the time the service starts there are at least five hundred mourners packing the pews.
The cathedral is banked up with Christmas reds and greens, hundreds of tiny red nightlights illuminating the sacred gloom. The organ is playing variations on familiar carols, muted but recognisable. The family are wearing holly-red roses on their black lapels, dispensing quiet smiles. A single red rose relieves the dark mahogany of the coffin. Two simple wreaths, both in the Christmas theme, lie beside it, presumably representing the generations. In childish writing I can see ‘For Granpops’ on the card nearest to me, nestling inside the rich dark green holly leaves. I feel a sudden choking sensation.
The minister explains that ‘our friend and brother’, Gerald Ronald Stevenson Grant-Hartwood, asked that everyone who was ‘kind enough’ to attend should give thanks for the richness of the life he was given, for all the opportunities, all the love, all the happiness, he enjoyed. The family have added tributes to flesh out the character of the man but in the spirit of thankfulness, not boasting, as he specified.
It is an intensely moving experience – even for me who never knew him. This was the man I scorned. Whose courage in the face of a devastating disease touches me more deeply than he will ever know.
The burial is to be private and the rest of us watch with silent respect as the family follow the coffin to its last resting place with quiet dignity. The tiny splashes of red sing out a paean of praise. I send my apologies across the air in an unspoken tribute.
It is too late to make amends to Lieutenant Colonel GRS Grant-Hartwood. But I vow to take stock and order my own priorities while the guilt still stings.
He’d been strangely withdrawn when he got home; she’d given him space. Not until they were in bed that night did he speak hesitatingly of his experience, his expression hidden in the darkness. He spoke of the dignity, the achievements, the tributes.
Listening, she wished she’d accompanied him. But her excuses had been genuine enough: she did have so much still to prepare for Christmas. What she hadn’t divulged was her dread of seeing people in a more advanced stage of MND than Adam.
21 DECEMBER—After a couple of hours on the novel yesterday I was feeling pretty low. Aidan’s in a bad way. So the sound of young voices giggling at our door impinged slowly.
They got off to an uncertain start, but by the time I’d staggered to the door with my zimmer, they were belting out ‘Good King Wenceslas’. It crossed my mind that in all likelihood, not one of them knew Wenceslas was a real king; they’d probably never even heard of the Czech Republic, never mind its rich history. But they were loving the excitement of being out in the dark, singing with their mates, being thanked by their victims.
They were collecting for the local children’s home. I must write a piece about this. The news always seems to feature the decline in standards of today’s youth – the joy-riders, the muggers, the druggies, the teenage mums, the bullies. A spotlight on altruism might hit the spot at Christmas-time. I’ll do it this week rather than commit it to my Ideas folder. Better still, I’ll start it now. While the emotion is fresh.
Even Harry was grudgingly positive about my piece on those kids. It’ll be in tomorrow’s edition. I’m quite pleased with it myself.
22 DECEMBER—It occurred to me today that I’ve missed the opportunity to do something I’ve often thought of doing: dropping people off my Christmas list if they don’t bother to say thank you. I read once of a woman who did that and I’ve secretly hankered to have that sort of courage but somehow never quite dared to. I guess a bit of me thinks I give for giving’s sake, not for what I get in return. But I still resent those who take for taking’s sake and don’t even observe the common civilities. My mother was a stickler about letters of thanks when we were kids; it’s ingrained in me. Maybe I secretly envy those who either were spared the childhood purgatory or abandoned the shackles as soon as they reached the age of discrimination.
Joel arrived tonight. With Paige. She seems lovely. Sort of peaceful. And pretty. Green eyes, red curls, curvy in the right places. A good listener. And Joel himself seems different. Quieter. Gentler. I can’t decide if it’s Paige or me who’s having this softening effect.
I caught him watching me closely a couple of times. It’s understandable. I hadn’t told him how much I’ve weakened since he last saw me. Well, I hadn’t stopped to think about it. Seeing things through his eyes has served to underline for me the deterioration that has slunk in by the back door.
But the change in him is almost more unnerving. I realise that in this world that’s spiralling out of control, I need him to be himself; my madcap little brother. Maybe when the clan gathers he’ll revert to type.
Naomi sighed. For one so perspicacious, Adam had been remarkably blind to his brother’s emotion.
‘I can’t bear to see him struggling like this, Nay!’ Joel had ground out over the phone. ‘If there was only something I could do!’
‘You can. Your visits, your phone calls, they’re a real tonic for him.’
‘How does he bear it? I’d have jumped off the Forth Road Bridge long ago.’
‘Please don’t tell him that! He’s thought about it but… please. Please, Joel.’ She hadn’t been able to suppress the tears.
Joel had been horrified by what he had unleashed, but the revelation opened the door to a new openness between them. Naomi found that sharing the worst moments with him eased and somehow legitimised her heartache. She came to trust in his capacity to maintain his jaunty image, and in his sensitivity to Adam’s mood and needs.
23 DECEMBER—Naomi and I attended the Christmas Service in our local church this morning. It felt good, singing carols with so many other folk; making a joyful noise. I don’t know if it was due to Thursday’s experience in the cathedral, or my heightened awareness of the brevity of life, or just all the changes we’ve experienced this year, but somehow the words meant more to me than usual. My mother would rejoice to know her errant son was actually thinking about eternal things! Not that I could tell her. She’d be in there like a terrier, destroying this fragile thing. No, it’s too private for public consumption.
A baby in the back row kept whimpering. I’d have expected some of the congregation to be irritated, but not a bit of it. He was as welcome as the infant Saviour! They turned, yes, but only to smile their pleasure. Glad you came, they seemed to say. Families especially welcome.
I saw Naomi glancing round. She smiled too. I reached across and took her hand. We both smiled. Maybe soon.
The sermon held my attention in a way I didn’t expect. The minister, Reverend Tom Blackwell, talked about important people. If the queen is visiting a town, everywhere gets painted and cleaned up and hosed down. Even if a lesser dignitary is coming, everyone scurries around making the place look as good as they can. Everyone dresses up, provides the best food and drink, makes a big effort. But Jesus, the most important man who ever walked this earth, (he said), was born in exile, raised in simplicity, lived in borrowed premises, died amongst criminals and hecklers. He never went outside his own land, and yet his influence has been greater than any king or queen or potentate before or since.
Lieutenant Colonel Grant-Hartwood springs unbidden into my thoughts. I’m reminded of the old adage: Those that mind don’t matter; those that matter don’t mind.
I felt a sense of peace as the final blessing committed us all to God’s love. He at least doesn’t judge by the outward trappings. Rev. Blackwell spoke to everyone as they left, to us non-members as well as to the regulars whom he called by their name; w
ishing us well individually. I wonder what he’d say if I told him about my suicide ideas. Would he still smile with such warmth? Would he still welcome us into his church? Or would he gang up with my mother?
Not that she’s raised the subject lately. Ever since my birthday she’s been more subdued. She still comes once a week and wields a mean feather duster (with Naomi’s blessing and our combined thanks). She and I have settled into a state of quiet equilibrium; we just don’t raise difficult issues. Naomi is more generous in her sharing.
The suicide thing has returned to haunt me again, particularly since that service in the cathedral. I want to be remembered in technicolour. Strong red against the black. But the guilt still nags; my mother’s teaching, her church’s doctrine. Even some mighty intellects, unhampered by the myths and taboos of religion, regard suicide as unacceptable. I read about this guy called John Hale, a brilliant academic struck down by a stroke, who said it was as immoral as murder. Nobody owns their life, he argued, it belongs to all the people affected by that life. *(For Ideas Folder. See The Man who Lost his Language by Sheila Lane.)
But in my circumstances? Isn’t it the lesser of two evils?
How macabre! – I’ve actually been reading a book about causes of death. It’s designed as a source book for writers but I’ve found it fascinating in relation to my own end. I probably ought to read the Hemlock people’s literature, and the Voluntary Euthanasia Society stuff too, but somehow this book keeps it impersonal. It isn’t saying, if you want to do yourself in, use a four inch blade or a particular type of knot on the noose or… it just gives the facts. I can rationalise it as legitimate research for my novel, keep it at one step removed.
Right to Die Page 26
