'I watched death toy with my husband for ten years': Julie saw her muscle-bound hunk go from slurring his speech to being entombed in a paralysed body. But she fell in love with him all over again - as she describes in this bittersweet memoir

Death toyed with Nigel, my darling husband, for ten years. It dragged its feet as the life dripped from him like water from a tap, leaving him to languish in a world where there is no mercy — his astute, tortured mind entombed in a silenced, paralysed body.

He had motor neurone disease (MND) and dreaded the final stages where he knew he would be both alive and dead. He believed that without choice you have nothing. ‘I’m lucky,’ he would say. ‘I get to choose how and when I die.’

What he — a true man’s man, who lived life to the full, a family man with three children he adored, a cheerful, gregarious character, always smiling and laughing, a popular figure in the pub, rugby club, golf club — chose was to end his days at Dignitas in Switzerland.

I was at his side then, holding his hand, as I had been throughout the years the disease destroyed his body, bit by bit.

I remember the start — how, in November 2006, he came home from golf and complained: ‘My tongue feels weird. One minute it’s twisting all over the place, the next it’s heavy as a brick.’ His speech was slurred.

Devoted: Julie supported Nigel throughout his ten-year battle with MND

Paula, my sister, who lives in the flat above ours in our Victorian house in Scarborough, noticed the change. ‘He sounds drunk,’ she confided to me. ‘Do you think he’s had a stroke?’ I jumped like she’d slapped me across the face and snapped, ‘Don’t be stupid!’ He was only 52. I failed to mention I had been thinking precisely that.

Typically, Nigel shrugged it all off, putting it down to stress from running his successful scaffolding and roofing business. But I eventually persuaded him to see a speech therapist, who gave him a reading test.

He struggled, sounding like a kid reciting tongue-twisters with a gobstopper in his mouth. Then his mouth refused to open, his lips pressed together as though glued.

He forced himself to speak but what came out between anguished gasps was like the choking cry of someone buried beneath rubble, like gravel scratching on glass. ‘You need to see a neurology consultant,’ the therapist said. ‘Soon.’

For years, ever since meeting him in 1975, I believed my macho husband was invincible.

He was of average build but, beneath his brown leather jacket, tight-fitting T-shirt and thigh- hugging denim jeans, lurked one powerful, muscle-bound hunk, with a body sculptured to perfection from a lifetime of physical hard work. Popeye would be jealous of Nigel’s muscles.

His working days were spent swinging on scaffolding structures with the confidence and agility of a gibbon, at heights where [steeplejack] Fred Dibnah would break into a sweat. His workplaces were motorway bridges, high-rise tower blocks, churches, cathedrals, roller coasters and the odd castle.

Enshrined in my memory is him working on a building in the centre of Leeds and me catching sight of him on my way to work. He knew what bus I’d be on and was there, hanging upside down, waving his arms and showing off. ‘That’s my boyfriend,’ I said to the chap next to me. ‘Isn’t he amazing?’

But, as I was slowly finding out, he was as conquerable as Goliath.

He had tests, examinations, brain scans, a biopsy. Three months of wilting in one wishy-washy hospital waiting room after another. And now here we were with a neurology consultant saying even more tests were needed before he could be sure.

‘But what do you think it could be?’ I ventured — the question we hadn’t dared ask before. ‘Have you any idea?’ Of course he had. It was written all over his face. ‘You’ve asked, so I must tell you.’ He suspected motor neurone disease.

‘What’s that?’ asked Nigel, a puzzled, but unconcerned expression on his face. He’d never heard of it.

‘This is a disease,’ the doctor explained, ‘where the motor neurones, the part of the brain that controls muscle movement, slowly stop working. The cause is unknown. The condition is life-limiting and there is no cure.’

Nigel absorbed the words. He didn’t move, his face impassive, before coming straight to the point. ‘How long have I got?’

‘Three to five years.’

Nigel drew a long, slow breath. ‘Right,’ he said. Moments like this are not what you imagine. There is no darkening sky, no thunder. The sun still shines. The world doesn’t hold its breath. Nothing has changed. And yet everything has changed.

Nigel and Julie on their wedding day in 1978

We listened, numb, as the doctor said he would contact Nigel’s GP and we should expect to hear from a physiotherapist, occupational therapist and someone from St Catherine’s Hospice.

The hospice? That’s for dying people. Look at him, my invincible husband, so strong, so fit. No way is he dying. And yet, however many doctors, therapists and professors were involved, from this point on, there was only one way this was going to end — with Nigel’s death.

What are you supposed to do when told you’re dying? There are no instructions, no guidelines.

‘Let’s grab a drink,’ said Nigel. ‘The Black Swan is round the corner.’ In the pub he stared at his pint, disbelief in his eyes.

‘I can’t lose you,’ I said, my voice breaking, ‘I love you.’

He kissed the end of my nose. ‘I love you too,’ he said.

I marvelled at how calm he was, how controlled. ‘Julie,’ he said, ‘everybody gets a kick in the bollocks at some point. This is mine.’

The clenching and unclenching of his jaw signalled he was preparing to take this thing on.

‘We’ll be OK’ he whispered. ‘We’ll survive this.’ He stopped and, typically, laughed. ‘That’s not true. I won’t survive this. But we’ll be fine. You and me. We’ll cope.’

But would we?, I asked myself. Where would we find the strength? I saw myself standing at one end of a collapsed bridge, striving to picture the other side of this expanse of infinite darkness.

As Nigel drove us home I wondered how long it would be before he could no longer grip the wheel. How long before walking was beyond him? How long before his body was consumed, withered and destroyed? How long before his speech was unintelligible?

That first night we barely slept. At 3am, I found him at his computer, clicking on ‘MND’. We learned it is a rare disorder, affecting around 5,000 people in the UK at any one time. It strikes at random. No reason. No trigger. Nigel’s muscles would deteriorate until he couldn’t move, speak, swallow, eat or breathe.

There was no pattern: each individual was different. It could kill you in six months or it could linger for years. More than half died within 14 months. Nigel’s prognosis of three to five years was the best you could expect.

We read about Stephen Hawking, diagnosed in 1963 aged 21 and still alive 44 years later. Did this offer hope? If you were content to be trapped within a depleted body and exist solely within the confines of your mind, then maybe.

Then we watched a documentary on YouTube of Craig Ewert, an MND sufferer from Harrogate, who travelled with his wife to Dignitas in Switzerland to commit accompanied suicide. ‘Not a bad way to go,’ was all Nigel said.

DEATH moved into our home. It oozed through doors and windows, skulked in corners, lurked in cupboards, the fridge, the pantry. I tasted it in my coffee in the morning and my glass of wine at night.

This intruder took a seat at our table, declared its intentions — and settled down to wait. Its presence was so profound that it was all I could see when I looked at Nigel.

I perceived its reflection, too, in the haunted, frightened eyes of our close-knit family — a son, two daughters, brothers, sisters. We stared at him, eager to retain the image of him while he was strong, and lock that image deep in our memories. Before he disappeared.

A nurse from the hospice paid us a visit and all her language was positive — referring to living with MND, not suffering or dying from it. She talked of the support the hospice would provide as his illness progressed, not worsened.

‘I want to die at home,’ said Nigel, calmly sipping his tea. He could be remarking on the weather. ‘Of course,’ she said. ‘We will help you with that.’

Each morning was like waking from an anaesthetic. I was numb, confused. I took to hiding behind the settee, squeezing into the tiny space. Our adversary, death, wouldn’t think to look for me there.

There were days when Nigel was so restless, I feared his pacing would wear a groove in the kitchen floor. He had to keep moving, dodging the monsters inside his head. He gave up working but carried on with everything else — playing golf, riding his bike, calling in at the pub.

He was preparing to face the future the only way he knew — head on. He drew up his bucket list. ‘I want an earring,’ he declared to the assembled family, ‘a gold one, and a Jag. And I want to play poker in Las Vegas.’

In the main, we were strong, like Nigel. His strength surprised even me. Not a single tear had he shed. No outburst of anger, no indulgent self-pity. No ‘Why me?’ He faced the future with courage and heroic resolve — though he disagreed on that description. He wasn’t in the least bit brave, he said. He simply had no choice.

It was Nigel who guided us through those wretched early days. He was the one holding us as we wept, the one making us chuckle as he cracked atrocious jokes. ‘I’ve been dying to see you,’ he quipped when my brothers visited. We laughed, in spite of ourselves, our spirits lifted ever so slightly.

I found that after 32 years of loving this man, I was falling in love with him all over again.

There was a moment when we got a medical update on Nigel’s condition. The MND was ‘mild’, another specialist told us, ‘it’s slow. And it won’t change pace.’ Surely this gave us hope. Nigel could have longer than we thought. But the prognosis was the same: three to five years.

‘But how long can I expect some quality of life?’ Nigel asked. To which there was no real answer.

Later that night, as we shared a bottle of wine, Nigel mused, ‘So, if it’s slow at the outset, it will be slow at the end. When I’m f***ed and can’t move.’

I thought of the man with MND I’d read about who spent his last year unable to move anything other than his eyebrows.

‘We’d better make the most of now, then,’ said Nigel with a grin, clinking my glass with a flourish. ‘Bugger it, let’s open another.’

He was determined the encroaching menace would not overshadow a single one of his remaining days. He fulfilled his bucket list of wishes — and more — as we luxuriated on holidays. We even lived in Spain for a while. Wonderful times.

THREE years went by and Nigel was still on his feet. Just. Most people with MND would be dead by now. I should be grateful. I was. I was also grateful Nigel was the man he was. He’d taken charge of this disease. ‘It’s all about control,’ he said. ‘I won’t let it take over.’

Accepting the unstoppable progress of MND, he was determined to be ready for each new development. He had an operation to insert a tube into his stomach so he could be fed if, and when, he lost the ability to swallow. His bag of death, a concoction of injectable drugs designed to relieve end-of-life torment, was stored in the kitchen cupboard.

The ‘Do Not Resuscitate Directive’, declaring he did not want to be given any treatment or medication to prolong life, was in the fridge. A lady from the hospice advised us to put it there. ‘Everybody has a fridge,’ she explained, ‘and all attending medical professionals know where to look.’

MND gnaws at its victim like a rat eating garbage. A tiny bit more vanishes every day. Nigel started to stumble when he walked so he used a cane, then a walker, followed by an indoor electric wheelchair.

We were helpless as the disease deployed its army of destroyers throughout his body, carrying out a perpetual assault on the muscles.

The first wave caused the muscles to twitch, the next attack brought never-ending spasms.

Meanwhile, platoons of special forces were secreted throughout his body — shoulders, arms, chest, hands, neck, tongue — and advanced with stealth, undetected. Raids occurred when he was sleeping, reading, watching TV.

Steady, sadistic sabotage meant he no longer had the strength to hold up his head without a neck brace; two hands were needed to grasp his cup of tea; he was unable to drink without a straw. A mobile hoist was now the sole means of transferring his body from chair or bed. His weakened body was becoming a prison from which there would be no release.

He suffered panic attacks; his hands shook; he glared with fearful eyes, at some imaginary demon. But though the Grim Reaper was camped on our doorstep, we were in no hurry to let him in.

There were moments when it was impossible not to mourn. ‘Don’t forget me, will you?’ Nigel said from nowhere one day, ‘the man I used to be.’ His arm flopped onto his lap. ‘I miss me,’ he said, his voice no more than a whisper.

But he never vanished into the fog that threatened to engulf him. He would not permit it to swathe him in its shroud. He was still him. In the end, MND would take Nigel’s life, but it would never lure the joy from his heart, nor dispel the spirit from his soul.

He was thrilled by his latest wheelchair, a top-of-the-range, can-do-anything model capable of travelling 15 miles before the battery ran out. ‘I’m free!’ he shrieked, hurtling down the lane to buy a paper, as excited as a youngster off on a huge adventure. ‘This cost more than our first house,’ he yelled to anyone who would listen.

It came in especially handy for our daughter Becky’s wedding. Her face brimming with joy, she was seated upon her dad’s knee as he propelled his wheelchair down the aisle, like a gilded chariot bearing a princess, before performing a perfect 360-degree spin and coming to a halt.

Meanwhile, I had my own conversations with the disease. What more did it want? Let’s consider your progress, eh? You’ve destroyed his body. Tick. Devoured the last morsel of his strength. Tick. Shattered the smallest splinter of hope. Job done.

So, now what? What’s stuffed up your stinking ragged sleeve? Sucking his spirit out through his eyeballs? Or maybe you could trample all over his soul until he’s nothing but a hollow, snivelling carcass? Satisfied? Well, you won’t be doing any of that. I won’t let you. Neither will he. So, eff off.

On February 10, 2012, we celebrated. It was five years since the diagnosis. I placed Nigel’s morning cuppa on the table and he reached for it with a trembling hand. His movements, now, were slow and hesitant. ‘Congratulations,’ I said. ‘You’re still here.’

‘Yes,’ he said, his face aglow. ‘Every day’s a bonus.’

Perhaps it is restricted to the terminally ill to truly appreciate the gift of each new day. Many of us breeze through life without recognising the value of anything. Nigel and I, as guilty as any, spent our working lives in pursuit of wealth and our idea of happiness.

Nowadays, trivial things, like his socks on right, his T-shirt smooth across his back, not too much toothpaste on his brush, were the primary elements of his contentment. ‘Things could be a lot worse,’ he said, and I replied, humbled, ‘You’re awesome. How do you stay so optimistic?’

‘Easy. Focus on what I can do, not what I can’t. Simple as that.’ And so the time ticked on, every day embraced with courage, laughter and love.

Nigel’s ‘slow’ MND proceeded along a path of plateaux and pits. We remained on plateaux for months and they became secure, manageable sanctuaries. But then our haven would be annihilated in an instant as he fell into a pit again, from which he would emerge weaker and more disabled.

The pit he spiralled into in July, 2016, was the worst. His body juddered with violent spasms. His jaw clenched. His eyes slammed shut. His skin was so sensitive he was unable to tolerate clothes. Even a silk sheet over his body burnt like acid. It was like a horror film.

Our daughter Ellie, who had given up her job as a teaching assistant to be his carer, watched her dad’s suffering and said: ‘I don’t see him coming out of this one, Mum.’ She could be right.

He usually hit the bottom of the pit within 24 hours before finding the determination to climb out. But this one was going on for longer and I found myself wondering whether, after nine harrowing years, MND would finally conquer his unconquerable spirit and steal his laughter. I begged him to hang on. I can’t lose you yet.

His body stopped shuddering as the morphine kicked in and he was sound asleep, his chest rising and falling as the ventilator he was now connected to did its job. I checked the catheter drainage bag, now a permanent solution that provided relief from the constant need to be close to a toilet.

As I rested in a chair beside him, I wondered where he went in his dreams. Was he free of MND when he slept? Running and climbing and erecting scaffold structures? Or playing golf? Or in the pub with his mates? Or was he with me, on our wedding day, dancing to Van Morrison’s Brown Eyed Girl?

Wherever you are, I miss you. I miss the life we had and mourn our ransacked future.

Our dog, Bodger, was at my feet as I fell asleep, only to be awakened by a low, rumbling growl. ‘What is it, Bodge?’ I whispered. He stared at Nigel’s bed, then gave a startled yap and tucked his head between his paws.

Ah, I realised, it was our old enemy, the spectre of Death, hovering by the bed. ‘You again. What do you want?’ I asked. ‘We’re not frightened of you. There’s nothing you can do to hurt us.’

But the phantom appeared different, not as vile as before, not dripping with decay. Instead, it reached out to me, open and welcoming. I didn’t understand. Where was the usual menace, the evil smirk? This apparition, which had assaulted my consciousness again and again, was looking at me with unmistakable compassion.

The squawk of seagulls woke me. The garden was awash with sunshine. Nigel was awake. ‘Good morning, darling,’ he said. ‘Any chance of a cuppa?’ He was smiling. And I had a sense that something fundamental had changed.

Adapted from Die Smiling by Julie Casson (Canbury Press, £13.99). ©Julie Casson 2024. To order a copy for £12.59 (offer valid until March 16; UK P&P free on orders over £25), go to mailshop.co.uk/books or call 020 3176 2937.