Die Smiling E-Book

Julie Casson

• Herausgeber: Haythorp Books
• Kategorie: Geisteswissenschaft
• Sprache: Englisch
• Veröffentlichungsjahr: 2024

Seitenzahl: 462

Beschreibung

A widow's moving and often funny account of her late husband's Motor Neurone Disease Deals with the experience of attending the Dignitas euthanasia clinic in Switzerland Published as the UK and France consider introducing assisted dying laws

Leseprobe

Die Smiling

Julie Casson

Die Smiling

A Memoir: The Sorrows and Joys of a Journey to Dignitas

Julie Casson

Haythorp Books

First published by Haythorp Books, a divison of Canbury Press 2024

This edition published 2024

Haythorp Books

Kingston upon Thames, Surrey, United Kingdom

haythorp.co.uk

Printed and bound in Great Britain

Typeset in Athelas (body), Futura PT (heading)

All rights reserved © Julie Casson

Julie Casson has asserted her right to be identified

as the author of this work in accordance with Section 77

of the Copyright, Designs and Patents Act 1988

This is a work of non-fiction

ISBN:

Paperback 9781914487262

Ebook 9781914487255

Contents

1. Looking Back 11

2. Death’s Calling Card 14

3. Brenda and Methuselah 23

4. Tests, Tests and More Tests 31

5. The End of ‘Normal.’ 40

6. Life with MND Begins 52

7. Breaking the News 61

8. Have I Told You the One About the Polar Bear? 75

9. Spain 89

10. The Bucket List 93

11. Where Hope Dies 99

12. Not Ready for This 106

13. Our Spanish Love Affair 111

14. Two Steps Ahead 120

15. MND Declares War 130

16. Don’t Forget Me 134

17. Cost More Than our First House 140

18. Starting to Die 145

19. 22 July 2011 155

20. Every Day is a Bonus 165

21. Don’t Laugh at my Cock 172

22. Toileting Matters 187

23. When the Laughter Stops 199

24. It’s All About Control 211

25. Apply to Die 218

26. The Provisional Green Light 234

27. Last Christmas 246

28. The Recce 255

29. Appointment with Death 272

30. Twenty-five Days Left to Live 291

31. The Goodbyes 303

32. The Hotel and the Doctor 311

33. One More Day 322

34. Nigel’s Cure 336

35. Nigel’s Last Goodbye 353

Acknowledgements 364

To my family:Nigel, who will remain forever in my heart.Craig, Ellie and Becky, who shared the pains, pleasures, perils and triumphs on this journey –a journey nobody should have tomake.And Bodger, who lay patiently by my side as I wrote it alldown.

The names of individuals in the caring and medical professions have been changed to respect their privacy.

1

Looking Back

I should never have looked back. Death is ugly. Chilling. It steals the familiar and leaves behind the alien. That beloved face, joyful in life, droops like the muse of tragedy. I didn’t realise his lips would turn blue so soon or his skin become waxy and tinged with a purplish hue.

It’s not him, my head tells me. He’s gone. It’s just a corpse. Death has claimed his soul, the living spark of the man I love. Only the vessel for life remains. But my heart wants them to wrap him in a blanket. Please cover him. Keep him warm.

The door to the blue house closes. It’s over. What happens now is not my concern. And yet, it is. I stare at the door. Behind it, the escorts will restore the room to its original state. They’ll wash the cups and glasses. Place the untouched chocolates back in the box. Secure the lethal gadget in the cupboard from which it came. Safely store the spent syringes, for evidence, until permitted to discard them. One of them, the leader, will notify the police. He’ll smoke a couple of fags on the bench outside as he awaits their arrival. An official investigation will follow. The paperwork, so diligently signed, will be complete and in order. Job done. Finished. Exactly what he wanted. Nothing matters now, Julie, does it?

Yes, it matters.

Will they look after him? Will they be gentle? Respectful? Take care not to snag his gastric tube and catheter? How will they lift him from his wheelchair? With no hoist, it will take the strength of two men. What of his coffin? I bet it will be one of those cheap, cardboard, eco things. And then what? How long before he’s cremated? Alone. With not a single mourner. Nobody who loves, or cares for him, to guide him on his way. Nobody to place their hand upon his coffin and bow their head in sorrow. Nobody to shed a tear for his loss, and no kind words to mark the life of this brave, funny, exceptional man. The only man I have ever loved. My darling Nigel. My husband.

Nigel believed that without choice, you have nothing.

‘I’m lucky,’ he said. ‘I get to choose how and when I die.’

We will all die. In that, we have no choice. Wouldn’t we, if we could, make a deal with Death, and select the option: ‘Slip peacefully away in my sleep, right after my hundredth birthday party?’ But Death is rarely so generous as to spare us for a century or more, and most pray, when our time comes, it will be swift, and not messy.

When people die, the living search for the mercy in their passing. ‘They won’t have known anything about it,’ we say, when scores perish in a natural disaster. If a mountaineer plunges to his death, ‘He died doing what he loved to do.’ Following a distressing and painful illness, we are consoled because, ‘Their suffering is over.’

There are those who are destined, for a time, to inhabit the world between life and death. Lost in the depths of coma. Neither alive, nor dead. The thing is, they don’t know anything about it. That’s the merciful part.

Death toyed with Nigel for ten years. Accustomed to its presence, he had no fear of it. In fact, he welcomed it. But Death lingered. Grew bored. As the life dripped from Nigel like water from a tap, Death, perhaps lured by the thrill of devastating catastrophes, dragged its feet.

Nigel was confronted by the rest of his life. His fate was to languish in a world where there is no mercy. Where his astute, tortured mind, entombed in a silenced, paralysed body, would long for Death to remember him. This is a place where, he knew, he would be both alive, and dead.

As I look back at that door, I look back at those ten years, and at what drove Nigel to make the choice he made. What compelled him – a man who loved life – to end it here, at Dignitas, in Zurich, on 25 April 2017?

2

Death’s Calling Card

November2006‌‌

Nigel digs the dirt from the grooves of his Callaway five iron with an old tee peg. Three and nine irons, soaking in soapy water in the sink, await the same treatment.

‘Big match, Nig?’ says Melanie, as she sips her coffee at our battered, pine kitchen table.

Nigel’s tongue skids round his mouth like a scooter in a skate park as he says, ‘Na. Jushya row wi’ ah ki.’

‘Pardon?’ gags Melanie, coffee splurting down her chin.

He spins around from the sink and attempts to repeat his words, but abandons the effort with an exasperated, ‘Ah, fuck it.’

‘I think that was “Just a round with our kid,”’ I say, ignoring Melanie’s alarmed expression and chucking her a tea-towel. I reach for his face. ‘You struggling today, love?’

‘Yeah,’ he says, kissing my hand. ‘My tongue feels weird. One minute it’s twisting all over the place, the next it’s heavy as a brick.’

‘What’s going on, Nig? asks Melanie.

‘Dunno,’ he chokes, placing his five iron alongside the sparkling seven in the black and grey Callaway golf bag in the corner, before plunging the nine iron in the sink. ‘Can’t talk. It’s no big deal. Be right tomorrow.’

‘But –’

‘More coffee Mel?’ I blurt. My face performing ‘discuss it later’ gymnastics as I mouth ‘not now.’

‘No thanks,’ she mutters, getting the message.

Melanie, a younger, striking female version of Nigel, with lavish, raven tresses and bone structure to die for, buries her face in her mug while her troubled, lagoon blue eyes follow her brother’s every move. I suspect her motive for her trip from Newcastle is more about her anxiety over the creeping deterioration in Nigel’s speech, than it is to update us on her new love and marriage break-up. Melanie frets like a traumatised chimp if your temperature soars one degree above normal, or if you’re ten minutes late arriving at her house. Compared to Mel, Florence Nightingale is a meanspirited old witch.

I grab an onion and tray of mince from the fridge and, in a showy pretence of apathy regarding Nigel’s speech, chop the onion into tiny chunks.

‘What’s for tea?’ Nigel asks.

‘Chilli. I’m making a massive pot.’

‘Lovely,’ says Mel.

Clubs cleaned, he retrieves his putter and a ball from the bag, takes a pint glass from the wall cupboard and places it on the floor, to act as a hole.

‘Bloody hell, serious stuff this. You playing for a tenner?’ I say.

‘More like twenty.’

I chuck the mince into the pan to brown, stirring as Nigel concentrates on his technique. Chewing his bottom lip, squinting at the target, he strokes the head of the putter towards the ball. If someone happened to graft Nigel’s hands onto a musician’s wrists, you would have one apoplectic musician. However, you’d be granted a delighted high five from a gorilla. Grapple hook fingers grip the putter as if it’s made of butter. It’s all about soft hands is golf. I appreciate this as I played – I use the term loosely – back when Nigel and I first met in 1975. I gave up, not without tremendous relief, when juggling kids and work provided me with the perfect excuse to put a halt to the torment. Four hours of stress and humiliation and vomiting in a bush whenever I hit a rotten shot does not make for a fun day out. I now limit such self-imposed misery to the odd round with Nigel, on holiday, where a glass of wine at the halfway house on the ninth, makes it altogether less odious.

Nigel, in comparison, gains as much pleasure from the game as I do pain. He doesn’t mind in the least if he has a harrowing round. Why worry if your drive slices across two wrong fairways, when your recovery shots are legendary? Approachable, a true man’s man, he’s as popular in the pub and rugby club as he is at the golf club. The banter with the blokes both on the course and in the Nineteenth are more important to him than a spanking score.

‘Woah! Eat your heart out Tiger.’ I applaud as the ball rattles across the tiles and hits the back of the glass. ‘The twenty quid is yours methinks.’

‘A knocking bet,’ he grins.

‘Did somebody mention twenty quid?’ says Les, bursting into the kitchen. Every member of the family, not to mention the odd burglar, wanders unchecked into our home. Les leans his mismatched clubs in their non branded bag – he’s not as dedicated as his brother – against the doorframe. ‘Hey, it’s that Mel,’ he cries, embracing his youngest sis in an exuberant hello.

‘Ey up, our kid,’ says Nigel. ‘Got your losing tackle with you I see.’

Les hesitates before responding, ‘You mean winning tackle, mate.’

‘Twenty quid says otherwise,’ says Nigel.

The concerned, now familiar glance, passes between Les and Melanie and next to me. Les inhales as if to speak further, but the words remain trapped behind pursed lips. It’s like the moment you are confronted with a puss-spewing coldsore on someone’s chin, and in a split second you choose between, ‘What’s that awful mess on your face?’ or a tactful silence. Les opts for somewhere in between.

‘You sound knackered, mate. You up for this?’

‘Damn right,’ says Nigel, replacing the putter and, his words indistinct and muffled, adds, ‘I can’t talk today, but I can still thrash you at golf.’

Removing his glasses before tugging the navy jumper, monogrammed with the initials SSCGC (Scarborough South Cliff Golf Club) over his head, he makes a show of smoothing the long since disappeared hair, and performs, as he does whenever he steps out of the shower or a swimming pool, an elaborate flick of the magnificent Elvis quiff that once adorned his handsome head.

‘You’re such a tit,’ laughs Melanie.

He is Bruce Willis in Die Hard kind of bald, where, having lost the hair from the top of his head, the only acceptable thing to do is remove the rest of the offending stuff.

‘You’ll need this mate,’ says Les, flinging Nigel his flat tweed cap. ‘It’s going to rain and you’ve nowt to protect yer bonce.’ Older by two years, Les, much to Nigel’s irritation, has retained his hair.

Nigel grins and chucks it back. ‘I’ll live. It doesn’t rain in the Nineteenth. Come on.’

He swings the bulky bag of clean clubs onto his shoulder like it’s a feather pillow. He always carries, never bothers with a trolley. It’s a macho thing, I reckon.

‘See ya later girls,’ says Les.

Mel waves them off. ‘Play well.’

Nigel adjusts his cap and leans to kiss my cheek. ‘Right love, won’t be late.’

‘Yeah right,’ I snigger. They’ll be stuck in the Nineteenth for hours. ‘Have a nice game.’

As they turn to leave, the door opens and Paula scoots in, carrying a scone-laden tray.

‘Hello everybody. I’ve made scones.’

She places the mountain on the worktop and returns Melanie’s welcoming embrace. Nigel and Les offer a hasty ‘Hi’ and ‘Bye’ as they shuffle past.

‘Not being rude Paula,’ says Nigel. ‘There’s twenty quid at stake.’

‘Don’t worry. Enjoy.’

‘Ooo great, I’m starving,’ says Mel, surveying the delights. ‘Can I scoff one now?’

‘Of course. I’ve done some herby ciabatta bread to go with the chilli later.’

She’s a feeder my sister. Whilst she seldom samples her delicious culinary masterpieces herself, she finds foisting them on others irresistible. Pinned above her range in her, ‘I mean business,’ cook’s kitchen, hangs a tile which reads: 'Lord, if you won’t make me skinny, please make my friends fat.' I suspect she doesn’t trust the Lord to do the job, so she’s embarked on the mission herself.

‘Ah lovely, thanks P.’

‘There’s strawberry jam, and cream as well.’

‘Would expect nothing less, Sis.’

‘Proper afternoon tea,’ says Mel.

‘There’s no tea on the menu,’ says Paula. ‘That would be plain daft. I’ll pop back up for wine.’

Mel scowls. ‘Does wine go with scones?’

‘Champagne?’ I suggest.

‘Perfect. Bubbles. I’ll run up and add it to the pile,’ says Paula, dashing back upstairs to the flat, which, once upon a time, housed the five bedrooms of our grand Victorian home. When we bought the place in 1990 it was arranged as two flats, the upstairs having a private staircase to the side. We proceeded to throw many thousands of pounds and skip-loads of love into the deserving money pit and restored it to a single dwelling, boasting a magnificent central staircase leading to cavernous, elegant rooms, all festooned with intricate cornices and countless period features.

Years later, when our three kids, Craig, Ellie and Becky, abandoned us to pursue their dreams, whether in a fit of pique for they had left, or the possibility of their reappearance bearing many small children, we threw yet more thousands of pounds at it and, not without considerable heartbreak, tore down that magnificent central staircase. Paula and Tom bought and converted the first floor into a splendid two bed flat and we adapted our own ground floor into a flat of equal grandeur – some would refer to them as apartments, but we’re from Yorkshire and a flat is a flat – and, to make up for the loss of five bedrooms, we stuck a knob of a conservatory on the back. I’ve never got over it.

It did, however, free us of the never-ending, interest-only mortgage. That interest being a whopping 18%.‌‌

...

The cork flies from the bottle with a convivial pop. Melanie and Paula hold their flutes aloft as I pour the sparkling champagne from what will no doubt be the first of many bottles.

‘Cheers.’

‘Mmm. More than respectable,’ says Paula, scrutinising the label.

‘Plenty more where that came from, girls. I’ve a garage full of the stuff in readiness for Christmas.’

I lean back in the vintage farmhouse armchair, most often reserved for Nigel, put my feet on the table and prepare to let the welcome bubbles perform their magic. When it comes to hosting drinkers, our table could compete with any pub in the country, and, I shouldn’t wonder, Munich’s famous Hofbrauhaus. It bears the scars of many sessions, stained to its core from gallons of spilled beer and wine, mutilated by distracted guests digging holes in it with a corkscrew, or Tracey, Nigel’s other sister, defluffing those holes with the hooks of her earrings.

It has witnessed joyful gatherings where we revellers sing along whilst Craig belts out well-loved tunes on his keyboard. It held us captive for weeks when planning each minuscule detail of Ellie’s and Danny’s wedding. This table has thundered with shrieks of raucous laughter, captured and dried waterfalls of tears, guarded and cherished many long held secrets. It has supported dancing feet, snoozing corpses, drunken heads and the odd bare bum, although we don’t mention that when Becky’s around.

‘What the hell’s up with our Nig’s speech, Julie?’ says Mel, with her characteristic boldness. ‘It’s terrible.’

‘He does sound drunk all the time,’ adds Paula. ‘First thing in the morning’s worse.’

I wonder if the two of them have rehearsed this. Plotted an ambush, determined to raise the problem Nigel and I have, not ignored, rather failed to discuss with anybody.

I fill our glasses. ‘Yes, I know. His speech is worsening. I managed to convince him to go to the doctor.’

‘Oh?’ they say, eyebrows shooting up in anticipation.

‘What did he say?’ says Mel.

‘She.’

‘OK, what did she say?’

‘That’s the trouble. She’s no idea.’

Paula slams her glass on the table. ‘Bloody hell.’

‘How come she’s no idea?’ says Mel, taking a few outraged gulps and a further top up, before continuing. ‘So, now what?’

I explain both Nigel’s and the doctor’s preferred option is to do nothing and see what happens. I suggested consulting a speech therapist.

‘Well, it’s a start,’ says Mel. What does our Nig say?’

‘He’s humouring me. He’s not the slightest bit concerned.’

‘How come?’

‘He’s convinced it’s stress. Pressure of work.’

‘Stress? Is the business in trouble?’ Mel asks.

‘No. Couldn’t be better. Booming, in fact.’

‘Stress?’ repeats Paula, ‘Seriously?’

‘Yes, I know. It’s bollocks,’ I say, sharing their disbelief, ‘I’ve never known Nig stressed. Ever. And, since when has stress affected anybody’s ability to speak?’

We fall silent as we contemplate the connection between stress and speech, whilst Eva Cassidy’s haunting timbre fills the room with, Somewhere Over the Rainbow. I refill our glasses. We clink. Sip. Sip again. We meet each other’s gaze, each worried expression a reflection of the other.

After a moment, Paula takes a deep breath and breaks the silence with, ‘Do you think he’s had a stroke?’

I jump like she’s slapped me across the face and snap, ‘Don’t be stupid!’

This is unfair, because, as a quality manager of an FE college, my medical knowledge is boundless.

I fail to mention I had been thinking precisely that.

3

Brenda and Methuselah

November 2006

We arrive at Brenda’s compact semi-detached bungalow a few minutes early for our appointment. She’s watching for us at the voile-dressed picture window, and opens the door in welcome as we pull onto the driveway.

With the exception of her broad smile, everything about her is petite. I’m surprised, as I had invented a rounder Brenda, with rosy cheeks, grey, shampoo-and-set hair, heavy rimmed glasses, feet wrapped in cosy slippers and a floral pinny tied around an ample waist. Instead, a short silver bob frames a pale oval face. Amber eyes, sparkling with vitality, peer from atop multicoloured specs perched on the end of her angular nose. She’s wearing an emerald fitted shift dress and bright red crocs.

‘Come in out of the cold,’ she insists. ‘I’m Brenda. You must be Nigel and Julie.’

We are invited into a tiny porch, housing a pale blue raincoat, one of those transparent birdcage umbrellas and a pair of green wellies. As I make to remove my boots, I stumble against Nigel in the cramped space, which he fills. He’s not a bulky man: five foot eight, could stretch to six feet were it not for the bandy legs, of average build and not at all overweight. Indeed, beneath his brown leather jacket, tight-fitting T-shirt and thigh hugging denim jeans, lurks one powerful, musclebound hunk of a bloke, with a body sculptured to perfection from years of physical hard work. But right now, his textbook body needs to vacate Brenda’s porch.

‘Don’t worry,’ she says. ‘Just give them a brisk rub. Come in both of you. Tea, coffee?’

We opt for tea.

The fruity, tantalising aroma of freshly baked Christmas cake wafts towards us as we follow Brenda into her home.

‘Mmm,’ I sniff, ‘been baking?’

‘Yes, I always make my Christmas cake in November. I shouldn’t. It’ll be gone before December. Cake is one of my many weaknesses I’m afraid.’

‘Not surprised. It smells divine.’

Brenda’s kitchen, like her, is tidy and tiny. Nigel waits outside in the hall to conserve precious space. By the time the kettle boils, I’ve concluded Brenda is widowed and lives alone. I must stop making assumptions. Just as Brenda is petite and not round, I insist on fabricating a person’s entire life, without a smidgen of evidence. Their abode, the car they drive, choice of wallpaper, state of the garden, will suffice. Therefore, a widow due to a lack of clues portraying a masculine presence. No man’s hat and coat in the porch, perhaps as well, as there’s no room. No half-read newspaper spread across the table, no garden spade leaning against the shed at the end of the manicured lawn, no photograph on the mantlepiece. I took a sneeky peek into the lounge as we passed. No photographs at all, in fact. Anywhere.

‘Cake?’ asks Brenda.

We decline, not wishing to share responsibility for its untimely disappearance.

As we observe Brenda arrange a tray with the prettiest porcelain cups I’ve ever seen, accompanied by matching teapot, sugar bowl and milk jug, I am struck by the beauty of her hands. They are delicate and smooth, belying her obvious age, and her impeccable nails are painted a bright red. It’s then I detect the lack of rings on her fingers. No wedding ring. Ah, not a widow, Julie? Blown that theory to hell. A spinster, I decide. No hubby, no kids. She may, in fact, have had three husbands and five kids, yet chooses not to decorate her home with mugshots of her brood. Unlike my kitchen walls, so plastered with portraits it’s impossible to stick a finger between the frames.

Why don’t I ask?

‘How long did you work for the NHS?’ I ask, instead, wishing it didn’t appear like I was checking her credentials.

As one would expect from a speech therapist, her manner of speech is even and controlled, and she explains she spent twenty years working at Hull Royal Infirmary before moving to the market town of Northallerton, six years ago, to be near her sister, where she has since practised privately. No mention of a husband. I’m tempted to probe further but she interrupts my inept un-Holmes-like deductions by switching the focus onto us, and we are obliged to explain that Nigel owns a scaffolding and a roofing company and I work in a college.

She leads us into the conservatory overlooking the garden and invites Nigel to take a seat at the glass topped and cane legged dining table while I make myself comfortable on the floral sofa at the other side of the room, deftly skirting the fluffy white cat, camouflaged on the sheepskin rug. Our presence is of such trifling interest it doesn’t stir. Or, it could be dead.

Porcelain figurines, Lladro, I suspect, of ladies adopting elegant poses line the windowsill. A spinster. Got to be. I bet she has one of those ballerina toilet roll covers.

Brenda hands me a cup of tea. ‘Thank you,’ I say, clocking once again those red nails and striking red crocs. An image of a ripped toy boy chained to the radiator in her bedroom comes unbidden into my warped mind, along with a plethora of sex toys loitering in her knicker drawer. What the hell is wrong with me?

Brenda offers Nigel an ever so fragile cup and saucer. ‘Nigel, tell me what’s happening?’

I study Nigel as he takes the cup of tea. No way will his finger fit through that miniature handle. No way. When Nigel’s hand’s not twirling a scaffold spanner it’s clutching a pint of beer. He takes the saucer in one hand and with the thumb and forefinger of the other, he grips the teeny handle of the cup and, twinkling aquamarine eyes reflecting the cornflower blue of his T-shirt, sticks out his pinky. Daft bugger.

‘Well, I’m struggling to speak.’

‘Suddenly?’

‘No. It’s been getting worse for a while. Some days my speech is fine, but other days the words are slurred and I sound drunk.’

Apart from the flatness of tone and heavy nasal quality, Nigel’s speech today remains comprehensible.

‘Have you been involved in an accident? A bang to the head, or any kind of trauma?’

‘No. Nothing like that.’

‘And this has developed gradually? Not overnight?’

‘Yes.’

‘OK, Nigel, let’s explore what’s happening,’ says Brenda.

Adjusting her specs, she opens a file and hands him a sheet of paper. She asks him to read aloud the list of words on the page.

‘Take your time. There’s no hurry.’

Nigel shuffles in the chair and clears his throat. I sense his unease. I recall him telling me how he hated reading aloud at school. At first, he copes well. Individual words present no problem. As he continues to read, he struggles with the plosive consonants such as, ‘t’, ‘d’, ‘k’ and ‘g,’ where the middle and back of the tongue need to become involved in the job. He sounds like a kid reciting tongue twisters with a gobstopper in his mouth. The more he grapples with the words, the more unintelligible it becomes. His strong hands grip the edge of the table as he persists.

We’re grateful when Brenda interrupts. ‘Rest a moment, while I make a few notes.’

Nigel leans back in his chair and takes a deep breath. ‘Bloody hell, what just happened?’

Baffled, I return his gaze. Nigel’s speech would never be tested like this: in a continuous stream of sentences. He’s not the type to babble or dominate conversations. He speaks with others, not at them, and is content to dip in and out with a well-timed retort, an observation, an anecdote at the most.

‘Ready?’ says Brenda after a couple of minutes.

‘Yes,’ he mutters. He’s no quitter.

The sentences now are longer and more complex and Nigel stumbles over the phrases like a schoolboy learning to read. An anxious, hesitant beginning soon deteriorates to the point where his speech is incoherent. His shoulders are rigid and hands, balled into tight fists, rub against his thighs with each forced utterance. His distress is difficult to watch, so I try and concentrate on the cat, the figurines, the carpet of fallen leaves in the garden. To no avail. I abandon that idea. Whatever this is, we have it to deal with. I close my eyes and listen.

...

There is an ancient bristlecone pine tree living high in the White Mountains above California. It is close to five thousand years old.

Its name is Methuselah.

Exposed and alone, it rises from the stark, snow-covered earth and stands, wounded but not conquered by centuries of ferocious winds, like a dedicated warrior defending a desolate landscape. Fissures, like rivers of molten copper, encircle the magnificent trunk, bronzed and blackened with age. Twisted by time, it’s as if, every thousand years or so, tiring of the view, Methuselah turns and looks the other way. Naked branches, contorted yet graceful, reach out in all directions, captured for eternity in the midst of an exotic dance.

We all know trees can’t talk, yet they can speak to you. Methuselah speaks of wisdom, of commitment and endurance. There is melancholy in its tortured branches and both dominance and resignation in the majesty of its trunk.

It has witnessed much: said nothing.

Imagine, if, after five thousand years of profound silence, this particular tree found a voice? You might suppose it would swell from a low rumble emerging from deep within the belly of its powerful trunk. It would draw on the self-assurance borne of longevity, throbbing with intensifying resonance, until a voice, dragged from the tips of every root and branch, echoes across the mountains in a triumphant roar.

Alternatively, it could be a tremulous beginning filled with uncertainty. Its customary confidence vanished in this unfamiliar place. Here is a mouth that neither belongs nor grasps what it’s supposed to do. It refuses to open. The lips are pressed as though glued.This mouth is filled with a clumsy and treacherous tongue. It blocks the space. The breath grates in a constricted throat. It commands all its strength and determination to drag the sound from its core. And when, at last, the garbled commotion erupts, it is in anguished gasps. Like the choking cry of someone buried beneath rubble, like gravel scratching against glass. It is a mournful, primeval, alien voice.

That voice is Nigel’s.

...

He shoves the papers across the table. We gape at each other. For the second time in an hour we’re grateful to Brenda as she takes charge.

‘That’s fine, Nigel, we’re all finished.’ She pats him on the shoulder before gathering the papers. ‘Well done.’

Nigel grimaces at the ‘well done,’ perhaps conscious his level of attainment is unworthy of congratulations. Like the kid who comes in hours after the rest of the pack in the cross-country race, the one who tries his best, unlike those other stragglers guilty of hiding in the woods, smoking with their mates and lobbing stones in the lake. He is the one who is rewarded with a patronising pat on the head for simply taking part. That’s not Nigel.

He snatches his jacket from the back of the chair, gripping it in both hands as if intent on tearing it to shreds. ‘My bloody tongue doesn’t belong to me.’

‘Yes, it’s very strange. Quite the mystery,’ acknowledges Brenda, managing her patient’s frustrations with calm assurance, smiling as she places her hand on Nigel’s arm. Nigel exhales with a whoosh, his shoulders drop as he relaxes a little. He takes the car keys from the pocket and tucks the jacket under his arm.

‘I’ll write the report today and it will be in the post to you tomorrow.’

Post? Haven’t you heard of email? Not famous for my patience and unable to wait for the report, I ask, ‘What is it, do you think?’

‘Well,’ she says, ‘I recognise the condition, but not the cause.’

‘Condition?’ echoes Nigel.

‘Dysarthria. Often referred to as “hot potato speech.” Speaking as though a hot potato is wedged in your mouth.’

Perfect. That’s it. I make a mental note to jump straight on the net once we’re home.

‘Treatment?’ asks Nigel.

I wonder if today’s encounter means my husband will utter no more than one-word sentences from now on.

‘Until the cause is established, we can’t determine the treatment.’

‘What do you suggest we do next?’ I say, anxious to be doing something.

‘I recommend you consult a neurologist,’ she says, and, as if I’m not sufficiently alarmed by today’s events, adds, ‘Soon.’

The consultation over, we thank Brenda for her time and promise to keep her updated.

Nigel slides the car out of Brenda’s drive onto the road. Never one to be pissed off for long, he leans towards me, crow’s feet creasing beneath sparkling eyes and says, ‘Pub?’

4

Tests, Tests and More Tests

November 2006 – February 2007

After all these years of believing my macho husband invincible, it turns out he’s as conquerable as Goliath.

First, the network of veins contained within those magnificent arms are mean. A tad unfortunate, given the requirement to fill the equivalent of many buckets with blood. The purpose of which is unclear.

‘Tests,’ we are told.

‘What are they testing for?’ asks Nigel, examining the needle as it is inserted, for a third time, into a shy looking vein. The persistent tapping to coax it isn’t working.

‘Oh, you know, lots of things, I expect,’ says the cheery nurse named Diane, her expression betraying nothing.

Nigel accepts the dismissal without challenge. ‘Right.’

I bet he’s more interested in where she’s from. A characteristic he shares with his dad, Ron and sister Tracey. Two seconds after meeting someone the compulsion to ask overwhelms them.

‘At last,’ she says, the vein submitting.

‘Where’re you from?’

There.

‘York, born and bred. You?’ she says, the tube now full.

‘Bradford –’

Unable to contain myself, I interrupt with, ‘What are they testing for. Specifically?’

‘Oh, nothing to worry your head about,’ she says, addressing me like I’m a child. She presses a snippet of cotton wool to the pinprick in Nigel’s arm and tapes over it. ‘This and that, you know.’

No, I don’t know.

‘They know what they’re doing in the lab,’ she continues. ‘There, all done.’

Well, that’s cleared that up. As long as they know, eh?

Second, he is claustrophobic. Discovered when a violent and unexpected panic attack overwhelmed him as the medical team attempted an MRI scan. Again, like the bloodletting, the reason for the MRI remains a mystery.

‘Expect a barrage of tests,’ said the neurologist at Nigel’s first appointment. Didn’t mention the ‘what’ and the ‘why.’

We’re paying, remember.

Claustrophobia is one of those conditions you’re unaware of until you find yourself stuck in a lift, trapped in a hole, or sucked into a scanner. I suppose the horror Nigel has at the prospect of potholing or working down a mine, should have provided a clue to his potential susceptibility. As it is, he hit upon a career which suits his temperament, where claustrophobic-inducing situations are rare. His life is spent swinging on scaffolding structures from tube to tube with the confidence and agility of a gibbon on the run, at heights where Fred Dibnah would break into a sweat. His workplaces are motorway bridges, high-rise tower blocks, churches, cathedrals, roller coasters and the odd castle. Anything involving going up before coming down is okay with Nigel – parachuting, bungee jumping and gliding – all enjoyed as a result of birthday gifts aiming for something a dash more adventurous than a pair of socks and Jean Paul Gaultier aftershave.

Anyway, here we are again, driving along the A64 to York Hospital, for a second attempt at the MRI, and we still can’t fathom why we’re doing it. On this occasion though, he has reinforcements. He has me, a stock of Lorazapam tablets and Bupa Bear. The teddy is poised in the back seat, exuding comfort and courage, as is his role in life. Bupa Bear, a reward from the staff of Scarborough’s Bupa hospital, for eight year old Ellie’s bravery following an operation on her nose. Since then, he’s been right up there with chicken soup and Muppet Babies videos, a vital member of the nursing team, tackling each childhood illness that dares to come along. Ellie shared Bupa’s healing abilities with her siblings, including older brother Craig, who, though he forbade the teddy to sleep on his pillow, would at least permit him to share the bottom of the bed. So, hearing of her dad’s panic attack, she popped Bupa Bear in the post without delay, hoping his superpowers would extend to carrying her dad into that MRI scanner.

Nigel shovels another Lorazapam in his mouth. ‘How many of those did the doctor say you should take?’

‘Two.’

‘How many have you taken?’

‘Three. Maybe four.’

I stop myself from saying, ‘Is that wise?’ and keep my mouth shut. We don’t need a row now. The interior of our Mondeo is a cauldron of simmering apprehension, threatening to boil over as every mile delivers us closer to the hospital.

Nigel reclines the passenger seat as far as it will allow. His eyes are squeezed as shut as the ‘see no evil’ monkey’s, and the fan of wrinkles carved in his skin is more prominent than usual. Jaw clenched, fists stuffed into the pockets of his leather jacket, as if feigning sleep to avoid discussion. It’s not working. I can tell he’s far from sleep by the way he keeps clearing his throat and shuffling in his seat. Come on Nig, my fearless, unconquerable husband, you’re in there somewhere. You’ve never lost a fight or run away from anything in your life. Perhaps the numbing effect of the Lorazapam has provoked his sombre mood. It’s not like him. Nigel finds hilarity even in tragic circumstances and digs up a joke – however tasteless – from the depths of a mass grave. But there is to be no joking today.

I glimpse Bupa in the rear view mirror. Hope you’ve brought bucket loads of courage, cuddly bear. Maybe we should’ve enlisted the additional help of Buffy the Vampire Slayer to vanquish Nigel’s fiends.

We reach the hospital.

‘Shall I take Bupa along?’ I say, grabbing the bear from the back seat. I’m joking, of course. How ridiculous would a bloke like Nigel look, snuggling a teddy? No matter how cute.

I am rewarded with a hint of a smile. He takes the bear from me and strokes its furry brown head before tossing poor Bupa over the seat into the back. He grasps my hand and raises it to his lips to kiss it. ‘Love you,’ he says.

‘Love you too.’

‘Come on. I can do this.’

‘You can do anything,’ I acknowledge, leaning into the back to perch Bupa Bear upright. ‘Sorry,’ I whisper.

It’s a short, Lorazapam-induced, totter to the waiting room, where Nigel swallows yet another tablet.

It’s time. I take his arm, to steady him, as we are led into an area with curtained cubicles. He is instructed to undress, don a cotton gown and remove his watch. From here, we are ushered into the scanning room, or, depending on your viewpoint, chamber of horrors. Two nurses, both built like nightclub door supervisors, guard the instrument of torture.

‘Back for another shot at it, Mr Casson?’ says a nurse with greying hair scraped so visciously into a bun on top of her head, her eyebrows are yanked halfway up her forehead. ‘Let’s have you.’

Her menacing voice grates like her face. Too long in the job I suspect. Run out of patience with patients. Nigel grunts and shuffles towards the scanner.

‘Come on, Mr Casson, we’ll look after you,’ says the younger nurse, opening her arms as if to enfold Nigel within them. ‘We’ll manage this time. We’ve arranged for some relaxing music to play while you’re in there.’

Angela, I note from her badge, pats the patient’s table like it’s Santa’s knee. ‘Up you pop.’

Alright Ange, he’s fifty-two, not six.

Nigel moves like a diver in lead boots. Beads of sweat dampen his brow and his breath comes in ragged bursts. Jangling, nasal grunts, unrecognisable as words, erupt from his mouth. He could be protesting, begging for mercy, or telling a joke. He clambers onto the table like he weighs thirty stone.

‘Come on now,’ says the bun, as he rests his head on a piece of moulded plastic.

Angela fastens a mask-like contraption over his face and locks it in place. ‘Try and relax, we’ve got you. Lie still and listen to the music. Think happy thoughts.’

That’s all he needs. His head in a box. I grab his hand. He closes his eyes. They crank the thing up.

‘It’s OK,’ I whisper.

He opens his eyes and regards me through the screen. No it’s not, they say. He might as well be pizza dough about to be rammed into a burning hot oven.

It takes all his courage, and he has loads of it, to command his body to cease its trembling and calm his breathing. I grip his hand as he slides into the scanner until I’m forced to let go. This is the first time Nigel’s vulnerabilty has surfaced. The first time I’ve witnessed his fear.

Wish I’d brought Bupa Bear in with us now.

...

Nigel stands facing the back wall of a compact examination room, naked except for his Calvin Klein, low-rise undies. Doctor Afik Khan, impossible to comprehend how he’s acquired doctor status, despite the neat moustache and closely trimmed beard, as there’s no way he’s older than fifteen, stands behind him. Young, handsome and a doctor. His parents must be tickled pink.

‘Place your hands on your hips please,’ he says.

Nigel obeys.

Doctor Khan cups his chin in one hand, cups his elbow with the other and appraises Nigel’s body in silence. Minutes pass. Then some more. I study the doctor as he gawps at Nigel, from my spot in the corner of the room. We are exceptionally still. It’s like the music has stopped in a game of 'statues' and the host has buggered off with the CD player without telling the rest of us the party is over.

What is he expecting to see? I muse, and fail to ask, as per.

Doctor Khan instructs Nigel to spin around to face him, whereupon he ogles some more. He studies Nigel’s body like he’s pondering the magnificence of Michelangelo’s David.

Yes, gorgeous isn’t he? I’m inclined to remark, as I too admire that familiar toned torso, those well-developed biceps, those awesome, uber strong thighs. As usual, I keep my mouth shut. This is bloody creepy. Nigel could be a rent boy parading before punters. I swivel on the chair so I can see his face and discover he isn’t the slightest bit perturbed. He’s biting his bottom lip to imprison the threatening guffaw and he winks at me, the devil himself dancing in his eyes.

Please don’t ask him to pace up and down. I envisage him strutting his stuff, hands on hips, wriggling his bum like he’s playing the lead in The Full Monty. The doctor doesn’t ask. He twists away from Nigel and orders him to climb onto the examination table for the next stage in the procedure. The procedure, we are informed, is known as electromyography, or EMG test. It’s something to do with muscles and nerves.

‘Where’re you from,’ asks Nigel. Surprise, surprise.

‘Harrogate.’

‘Great town,’ he says, proceeding to name the buildings and streets upon which he has erected scaffolding, whilst the doctor, oblivious to Nigel’s anecdotes, places sensors and electrodes on his skin.

‘Brilliant golf course, too,’ Nigel persists. ‘I nearly had a hole in one on the fourth, or was it the fifth?’

Attractive young man, with proud parents, he may be, but Doctor Kahn wouldn’t trouble first place in a bedside manner contest.

Next, as if punishment for the lack of any kind of performance from the lengthy observation of that superb anatomy, thirty painful minutes pass as the doctor punches long needles deep into the offending muscles of Nigel’s arms, legs, back and throat. It takes less than a minute to shut Nigel up. Whatever is taking place inside those muscles is translated through the electrodes and needles into graphs on the computer screen and Doctor Khan, thorough and in no hurry, spends several minutes analysing the data before him.

‘Mmm. Inconclusive,’ he says at last. ‘Come back in a month and we’ll do it again.’

Brilliant. Can’t wait.

...

We’re in an agreeable room at the private Nuffield hospital in York. Nigel is in bed, gowned and ready for surgery. Les is stationed at one side of the bed, I’m at the other. The surgeon, Mr Field, has made a mark on Nigel’s thigh muscle from where he will take the biopsy. He takes the time to explain in detail – this happens when you’re a private patient – how long the procedure will take and when we’ll be allowed home.

‘They’ll be along to collect you shortly,’ he says.

‘Don’t call me shortly,’ jokes Nigel, a retort he never fails to employ when presented with the opportunity.

Mr Field chuckles politely, something else that happens when you’re a private patient. He addresses the room. ‘He’ll be gone around an hour.’

‘I’ll wait here, mate. Read the paper,’ says Les, who’s come along to do the driving home. Or, he’s nothing better to do today. The two of them will no doubt call for a pint back in Scarborough.

‘I’ll pop to Tesco’s, do a massive shop,’ I say, keen to take advantage of the superior and gigantic store at nearby Clifton Moor.

‘I’ll have mi’ leg off then,’ says Nigel, grinning.

Another polite snicker as Mr Field leaves the room with, ‘The results of the tests will be with your neurologist by the end of next week.’

‘Right,’ I say. Tests for what? I wonder. And obviously, I don’t ask.

5

The End of ‘Normal’‌

10 February 2007

The stunning renovation of a sixties, three-bed suburban semi in Shipley fails to stun me. In truth, I couldn’t give a shit. Snapping the House Beautiful magazine shut, I fling it on the beech coffee table with unwarranted irritation. Could do with some stunning renovation round here, if you ask me. Must hospital reception areas be limited to the colours pink and green? Has some edict been imposed on such establishments? Three months of wilting in one wishy-washy waiting room after another. The tired décor of this one stares back at me. Pastel pink walls bearing cockeyed pictures of white lilies, pale green carpet and impractical pink chairs, rubbed grey by hundreds of backsides. Even the lush umbrella plant in the corner fails to lift the insipid palette. Colours that make you feel ill when you’re not. I expect better from a private hospital.

‘How much longer do you suppose?’ I spit, not caring if the receptionist hears me. She does. The thirty-something attractive brunette behind the desk glances up and throws me an indulgent smile. The kind of smile you plaster on your face when hoping to deter a toddler from having a tantrum.

‘Mr Harrop won’t be long,’ she says. ‘You’re next. He knows you’re here.’

I lower my gaze in shame. I would shove me to the bottom of the list if I had her job.

‘Calm down, we’ve just arrived,’ says Nigel. ‘We’ll drive into York after and grab a bite. I might as well pick up the accounts from John’s, while we’re here. And there’s a decent pub near his office.’

Mollified by the thought of lunch and a glass of wine, I slouch in my pink chair and shut up. I like York. It’s such a vibrant, enchanting city, bursting with history and culture, a joy to walk round with scores of impressive eateries and a gazillion pubs, all of which claim to be the oldest and most haunted in the city. There are also many shops, if you happen to be into shopping, which I’m not.

Nigel uses the time to sketch the scaffolding framework needed for the job he measured up on route.

‘Do you suppose we’ll get the test results today?’ I ask, unable to keep quiet for long.

He drags his attention away from his jottings and fixes me with a blank gaze. ‘Maybe. Dunno. We’ll see, eh?’

He resumes the task of listing the required scaffold poles: five foots, ten foots, twenty-ones. Some time ago the back of a fag packet served admirably as his office. Way back in 1984, when we bade farewell to the West Yorkshire town of Cleckheaton and chugged along the A64 towards Scarborough, like hillbillies setting off on holiday. Me, the kids and all our possessions, crammed in the back of a battered old Transit van on the way to our new home: an imposing block of thirteen holiday flats on Scarborough’s South Cliff.

My dad came up with the idea of investing in a single holiday flat to rent out to cover its mortgage. It took no more than a couple of property viewings for Nigel to discover a significant proportion of Scarborough’s buildings are old, tall and difficult to access. Combined with the advertisement of a businessman in the local yellow pages, whose tagline boasted, 'Scarborough’s only scaffolder,' the acorn became an oak tree.

Mum and Dad, Paula and her then husband Joe, were all keen to be part of the adventure, and within months we had sold our properties, combined resources for the deposit and secured the flats. With Mum and Paula’s help, I would manage the flats, the income from which would pay the mortgage and bills. Nigel borrowed a terrifying two thousand pounds to buy the scaffolding needed to establish his company. Dad – a painter and decorator – declared himself more than happy to enliven the décor of Scarborough’s homes rather than those of Halifax. Paula was confident she would find work, and certain her husband, executive of I’m not sure what, would continue endlessly travelling the country.

Business networking, in those days, took place in pubs and clubs. Within weeks, Nigel, already a member of the South Cliff Golf Club and Scarborough Rugby Club, made it his mission to visit the full gamut of pubs in the town, immersed in his research, determined to find drinkers in need of the services of a new scaffolding company. He met Glyn, a local window cleaner, soon to become Nigel’s business partner. Given the brutal effect of salty sea air on glass, window cleaning in Scarborough is a lucrative occupation, and in those first few months Nigel and Glyn helped each other out by juggling window cleaning and scaffolding.

Meanwhile, me and the kids adapted to our new lives. Craig, never comfortable until his surroundings are conquered, carried out the equivalent of the ‘knowledge’ on his bike, cycling up and down the maze of streets, parks and pathways in the town until he considered himself at home. Ellie, a happy child, remained in a perpetual state of excitement because we lived a ten-minute walk from the beach, and Becky, a mere baby, became accustomed to having a busy and distracted mother and, disturbingly often, no cot to sleep in, whenever the flats’ supply couldn’t meet demand.

The whims and concerns of the guests consumed my life. A shortage of teaspoons, a loose pan handle, a cracked plate. Nothing worried our guests more than the white furry element in their flat’s kettle. They’d stand at my door, brandishing the offending object, something approaching genuine fear on their faces, and point at the poisonous substance lurking inside.

‘It’s harmless,’ I would explain. ‘Caused by Scarborough’s hard water.’

Waste of breath. They never believed me. In the end, I swapped my own kettle for theirs. I was getting through three kettles a week by the end of month two.

We lived in that multi-generational home for four years without having a single row. But our growing children needed more independent space, and I had secured a part-time teaching job at the local FE College. Also, I had become bored of the kettle wars. Nigel’s business was thriving and the window-cleaning had long since been abandoned.

Now, twenty-five years on, as many men work for them. Some of the town’s iconic architecture: the Grand Hotel, the Spa Complex, Valley Bridge, Spa Bridge, and also the Castle, all propped up, at some point, by DNC Scaffolding, without which, I’m certain, the town would slip into the sea. Along the way Nigel and Glyn formed a roofing company to complement the scaffolding business, bought property via their holding company and acquired premises for the storage, hire and sale of scaffolding, roofing and general building equipment. That two thousand pounds and those few pints paid off.

...

‘We’ll see,’ I ponder, dragging my thoughts back to the present.Reminds me of how I’d placate our nagging kids. Be quiet now and bugger off and play is the accurate translation.

I reach for another magazine but hesitate before picking it up. I spot the receptionist looking at us. I’m sure she recognises us, as this is our third appointment. I ignore her and focus on the door we first entered three months since, clutching Brenda’s report.

'Dr Peter Harrop. Neurologist,'reads the sign.

Maybe Nigel’s right. Maybe it is nothing more than stress. If so, is it necessary to carry out so many blood tests? Should you be expected to endure an MRI scan to determine your stress level? Is there some indicator on your brain that glows red when you’re sucked into the tube? Is there any need to endure the pain of electromyography and nerve conduction tests? Twice? And, how could it be normal practice to perform a biopsy on a chunk of your thigh muscle in order to examine it for what? Stress? Stress, my arse.

The door opens and Peter Harrop appears. I leap to my feet. At last. We’ve been waiting all of seven minutes.

‘David. Hello again. Come in, come in. Good to see you.’

For a second I’m confused, I thought we were next. And now Nigel is shaking the neurologist’s hand like he’s an old mate. Such a mate Nigel hasn’t told him his name. I scurry on behind, cursing my husband’s parents who gave him the forenames of David Nigel, and thereafter referred to him solely as Nig. What possessed them?

Perhaps they baulked at the name David as soon as they registered it? In those days, maybe they worried Nigel sounded posh? It’s feasible, back in the fifties. Up north anyway. Perchance they feared such a label might encourage kids called Gav, Jack or Mick to beat him up? Who knows? So Nig (rhymes with pig) was it. The name ‘Nig’ is restricted to family now, to others, he’s Nige or Nigel. In official circumstances, however, he is always referred to as David. He never tells these professionals his preferred name. It amuses him. It annoys the hell out of me.

So, here I am, sitting next to some bloke called David, before a grand walnut desk. The bulky desk dominates this poky, white, functional room. There’s an examination table against the left wall, a tiny sink and four-drawer filing cabinet next to it. Framed certificates share the wall behind the desk with a window, overlooking the car park.

‘Now, David, how are you?’

Peter’s a congenial chap, fortyish, short, cropped black hair, which fails to disguise approaching baldness. Intelligent eyes, the colour of smoke, regard Nigel with a relaxed, confident air. As you might expect, at seventy-five quid a consultation.

‘How’s your dad?’ says Nigel.

What? Didn’t see that coming. How has Nigel met this guy’s dad?

‘Oh. You know my dad?’

‘Well, for a chat over a pint, that’s all. He drinks in the Highlander doesn’t he? Unusual name “Harrop.” I called in there the other week and I asked if he knew you.’