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‘I’m feeling sleepy’, my darling husband said… then gave me a mesmerising smile before he slipped away: Julie Casson describes how her husband finally achieved the liberation from motor neurone disease he’d so craved


We arrived at the luxury hotel in Zurich in the motorhome we’d hired for the 800-mile drive from Scarborough to Switzerland. Flying Nigel there or going by train would have been preferable but was impossible given the deterioration in his condition.

By chance we’d come across this vehicle already equipped for disabled use, with ramp, profiling bed, ceiling hoist and toilet. ‘Mabel’, as we named her, was perfect.

On the afternoon of April 23, 2017, our grungy, whacked-out carcass of a vehicle, as dishevelled and bleary-eyed as its passengers after 24 hours on the road, drove into a hotel car park full of Porsches and Bentleys. An officious concierge flapped his hands in disgust and tried to turn us away before we wafted our reservation in his face.

We had made it. My bedraggled, stinking, exhausted family — Nigel, of course, my severely ill, disabled, yet contented, husband, me, his wife, and the children, Craig, Becky and Ellie — were installed in Zurich’s finest hotel. We had brought him here to die, at his request, and end his ten years of suffering with motor neurone disease (MND).

When we were ushered to our rooms, Ellie and I inspected the facilities. The mobile hoist, sling and disabled shower chair were present, as requested. But there was no grab rail in the toilet and we needed at least six more pillows. I’d never prop him up without them.

Treasured memory: Nigel carries daughter Becky down the aisle on his wheelchair at her wedding

Treasured memory: Nigel carries daughter Becky down the aisle on his wheelchair at her wedding

A final family photo: On the way to Dignitas in 2017

A final family photo: On the way to Dignitas in 2017

Regardless of how much we were prepared to pay, or how exclusive the hotel, taking Nigel away from the up-to-the-minute, customised, disabled-compatible sanctuary he had enjoyed at home emphasised the degree of his disabilities.

Nigel, though, was having fun, pirouetting around the room in his wheelchair, more like a teenager than an ageing invalid.

‘Hey, Julie,’ he said, a devilish glint in his eyes. ‘We’re gonna sleep in the same bed for the first time in years.’ I answered: ‘Don’t you be getting any ideas.’

Shortly after, as arranged, a doctor arrived — the one who, a few weeks ago, after reviewing Nigel’s case, had granted the provisional green light for his accompanied suicide.

‘Mr Casson,’ he said, ‘I must ask you some questions. Please answer them truthfully.’

The doctor spoke with careful concentration, reflecting the solemnity of what he was asking. ‘Do you understand what it is you have requested to happen?’

‘Yes,’ said Nigel, without hesitation.

‘Do you understand what will happen if it goes ahead?’

‘Yes.’

‘Have you been coerced in any way in making this request?’

‘No.’

‘Are you sure?’

‘Yes.’

The doctor then left, saying he’d come again tomorrow.

He was back the next day at 11am. ‘Good morning, doctor,’ gushed Nigel.

‘Guten Morgen, Mr Casson. How are you feeling?’

‘Never better.’

Then the doctor repeated yesterday’s questions, to be certain nothing had occurred overnight to trigger doubt in Nigel’s mind.

Nigel responded with that same bold determination and the doctor said: ‘I will write the prescription [for the lethal drug] today.’

Nigel drew a long, shuddering breath. The green-light status for his death had switched from provisional to definite. He had passed the test. He would die tomorrow. ‘Thank you very much,’ he said. ‘I’m so grateful.’

After he’d gone, Nigel’s rapturous face flashed like an Olympic champion’s gold medal.

‘Fantastic. I couldn’t be happier,’ he said. His ten-year ordeal with MND, which had reduced him to a shell of his former self, was about to end. He was going to get his wish: to die smiling.

We had lunch, savouring a divine bottle of wine, then another and another, before the arrival of the man from Dignitas who would escort Nigel to his death. He was around 50, with kind, twinkling eyes and a wide smile. His name was Gabriel. As in angel, I thought to myself. Angel of Death.

‘Mr Casson. Delighted to meet you. I will be with you tomorrow. We find it helps people to meet the day before. Can be daunting. Better if relaxed.’ He shook hands with the rest of us and asked: ‘You will all be present tomorrow?’

‘Of course,’ we chorused.

‘The doctor has written the prescription,’ he told Nigel, and went through the same questions as the doctor. Nigel was as determined as ever in his responses.

‘Now, Nigel. How do you intend to take the barbiturate? You must do it yourself. Nobody can help you. Can you swallow?’

Nigel replied: ‘Yes, but I won’t take it that way,’ and lifted up his T-shirt to expose the gastric tube he’d had inserted years ago just in case he lost the ability to swallow. ‘This handy little tube should do the job,’ he said.

Nigel's family gather around his bed for a party in 2017

Nigel’s family gather around his bed for a party in 2017

I recall the day the tube was fitted. His body recoiling in shock as the surgeon stabbed his stomach, the gagging as the tube invaded his throat, the endless, pain-racked night no amount of morphine could suppress. Had he endured all that for this? Was he planning this so far back?

Gabriel reached his last question: ‘Can you press a button?’ ‘Yes,’ Nigel replied. ‘Then I’ll see you at 11 o’clock tomorrow.’

After he’d gone, I flopped onto a chair and studied my family. Craig, Ellie and Becky were immersed in their thoughts. Were they, like me, attempting to process what was happening? 

Were they trying to accept, after all the months of planning, the endless exchange of emails, the overcoming of procedural and medical hurdles, the conquering of numerous logistical challenges, that now, finally, the arrangements were in place? Their dad would die tomorrow.

In contrast, the radiance flooding from Nigel’s face was like a beacon illuminating the darkest of nights. ‘More wine anybody?’ he said. ‘Order room service. It can be our last supper.’

That night we ate foie gras and vichyssoise with poached quail egg and smoked salmon, spring lamb or beef fillet for the main, green asparagus and sweet potato mash. An alpine mountain of chocolate mousse closed the meal. All guzzled down with the help of glorious Swiss wine.

The talk was all of happy memories, with joyous laughter. Then Nigel drained the last of the wine, inclined his chair to upright and said: ‘I’m so proud of you all. I love you very much. ‘Don’t mope when I’m gone. I want you to be happy.’

He sagged in his chair. The long day, emotive discussion, not to mention the wine, all taking effect. Inhaling deeply, he summoned the will to impart another piece of advice to the children. ‘Whatever you do, have fun. Lots of it. I’ll see you in the morning.’

Then he and I were alone, just the two of us, and as I held him on this our final night and told him I loved him, he said: ‘Be happy again. When I’m gone.’ I’ll never be happy again, I thought. I couldn’t conceive of life without him. ‘I’ll try,’ I lied.

When morning came, Nigel was already awake. ‘How are you?’ I asked. ‘Are you nervous?’

‘Not at all.’ I searched his face for signs of apprehension, the faintest flicker of doubt. There were none.

‘Are you sure you want to do this, Nigel?’ ‘Definitely. It’s the right thing to do.’

No one had much of an appetite for breakfast. I chewed on a chunk of bread; Nigel nibbled on a bit of cheese. ‘Feel a bit sick,’ he said. ‘Must be the wine last night. Can’t be covered in vomit when I croak.’

I wasn’t convinced it was simply the wine making him feel sick. Perhaps he was the tiniest bit anxious after all?

On his iPad, he checked his bank account, just as he did every morning. For years, this piece of technology had been his lifeline, his gateway to the world: the means to communicate and contribute to discussions; to share his playlist late into the night with revellers dancing around his bed; to impose jokes on friends and to play poker with like-minded gamblers.

Facebook had elevated his life and given him purpose. Through it he reconnected with schoolfriends, Army mates, joined a community of fellow MND sufferers and befriended scores of people from around the world.

Now he handed it to me. ‘I’m finished with it,’ he said.

We took our final family photo. Five smiling faces, none so jubilant as Nigel’s, captured in Zurich’s most luxurious hotel lobby, gave the impression of a family heading off on a thrilling day out. 

And they say that photographs never lie. The taxis I’d ordered the night before were here. ‘Let’s do this,’ said Nigel, racing for the door in his wheelchair. I handed our driver the prepared, no-room-for-error postcard, bearing the address of our destination.

We drove into what appeared to be an industrial estate, before coming to a halt outside a featureless, two-storey box of a building, with a cladded blue exterior. There was a Lidl supermarket on the corner. 

Did the people stocking up there realise what happened here as they went about their weekly shop? Who could imagine such extraordinary activity occurring in such an ordinary setting?

Gabriel was waiting outside. ‘Nigel,’ he cried, grasping his hand. ‘Excellent to see you. Come this way.’ He was as courteous as a host welcoming guests for lunch.

We entered a dimly lit, square-shaped room. The window blinds were half-closed — against prying eyes, I assumed. Additional light was provided by two old-fashioned shaded standard lamps.

Despite innumerable references in the media to the Dignitas ‘clinic’, there was nothing remotely clinical about it. It couldn’t be considered stylish, either. The furniture was basic; reminiscent of a budget holiday rental.

Julie and Nigel, who suffered from motor neurone disease for ten years

Julie and Nigel, who suffered from motor neurone disease for ten years

Julie and Nigel, who suffered from motor neurone disease for ten years 

A two-seater settee and chairs, covered in a fabric evoking memories of my grandma’s parlour, were grouped next to a coffee table bearing a jug of water, drinking glasses, a vase of tulips and a selection of Swiss chocolates. (A thoughtful addition, the chocolates — the barbiturate tastes vile, I understand.) There was also an opened box of tissues.

Against the wall was a hospital bed covered in a single sheet. A gilt-framed picture of the Alps hung above it. The far wall was occupied by a circular wooden table, upon which was a box containing a gadget topped with a large red button and a tube.

Anna, introduced to us as Gabriel’s colleague, offered us tea. Craig, Ellie, Becky and I gaped at her like she’d just proposed we all snort coke. The unexpected conventions of polite hospitality, as if we’d popped in for afternoon tea and a jolly natter, seemed absurd.

Nigel, though, was entirely at ease and signalled ‘No thank you’. I opted for coffee, not wishing to appear rude. Gabriel invited us to sit and Nigel located his wheelchair in the centre of the room, grinning, his eyes sparkling with mischief, pulling the kind of face you pull when you’ve done something naughty, like breaking wind in a lift.

‘OK,’ said Gabriel. ‘Paperwork first. Nigel, can you sign your name?’ ‘Yes.’ Then Gabriel gripped Nigel’s shoulders and fixed him with a penetrative stare as he enunciated each word with exaggerated care.

‘Nigel, you can still change your mind. Do you wish to go ahead?’

‘Yes.’

‘OK,’ said Gabriel, stepping back. ‘First, an anti-emetic drug will be administered through your tube, via a syringe. This stops you from being sick when you take the lethal barbiturate. Anna and I will then leave you to spend time alone with your family for 20 minutes, while the anti-emetic takes effect. Everything clear?’

We nodded respectfully, as if we’d just been issued with the housekeeping instructions for the fire exits and loos.

Gabriel asked again: ‘Nigel, are you sure you wish to do this today?’ ‘Yes,’ said Nigel, his voice as formidable as I’ve ever heard it.

‘Finally, Nigel, I must tell you exactly what will occur. After a few minutes, you will fall asleep. You will not wake up. Do you understand?’ ‘Yes.’

‘It always works. It has never failed.’ ‘Good.’ ‘Is this what you want?’ ‘Definitely.’

His resolve was like a punch to my chest. There was to be no last-minute change of mind. Craig’s and the girls’ shoulders drooped and one by one they shrank into their chairs. Our gaze locked. ‘Be strong,’ I screamed in silence. ‘For Dad. We can do this.’

Nigel grasped the pen in a trembling hand and painted a meticulous, flourishing signature on the swathe of documents handed to him, including one confirming that he had voluntarily committed suicide and had been thoroughly informed by Dignitas of the process.

Gabriel dispensed the anti-emetic into Nigel’s tube. This was it. It was actually happening.

We were left alone with Nigel to make our farewells, each one of us processing this uniquely taxing situation, unsure what to say or do. ‘What about some music?’ said Nigel, and requested a choral chant by the German group Enigma. (Could have been worse. Given Nigel’s sense of humour, it might well have been Stayin’ Alive by the Bee Gees or Queen’s Another One Bites The Dust.)

Enigma’s poignant strains filled the room as, first, Craig, his jaw clenched so tightly the veins in his neck bulged purple, approached his father. ‘Bye, Dad,’ he choked. ‘You’ll always be my hero, Dad.’

He made way for Ellie, tears pooling in her eyes, who kissed Nigel on his cheek and, voice trembling, said: ‘I’ll miss you, Dad.’ Becky then wrapped herself around his shoulders, smothering her tears by burying her face in his neck. ‘You can stop pedalling now, Dad,’ she told him.

Nigel held out his hand for me. As I peered into his eyes, those fathomless pools, I knew I would never again see or feel such overwhelming and unconditional love.

‘It’s been a joy to be your husband, Julie,’ he said. ‘You’ve made me very happy.’

My heart heaved in my chest and the clenching of my throat made me dizzy but I was determined not to cry. ‘You’ve made me happy too. I’ll miss you,’ I said.

He drew me towards him and I rested my face close to his.

‘In the words of the song,’ he said, ‘I will always love you. Look after our family — and don’t forget to brush the dog.’

Then he said: ‘I’m ready. Let Gabriel and Anna back in.’

Gabriel took the red-buttoned gadget from the box, attached a syringe bearing the lethal barbiturate and placed it within Nigel’s reach. He fitted the cylinder into Nigel’s gastric tube. Like unwilling participants dragged in to witness a macabre ceremony, we balanced on the edge of our seats, stiff-backed and silent.

‘When you’re ready, Nigel, press the red button.’ Nigel glanced at us and snickered: ‘I’ve always wanted to press the red button.’

‘Ready?’ said Gabriel. ‘Ready,’ affirmed Nigel, but then paused, his hand hovering above the button. ‘Wait. I need a penny to pay the ferryman.’

‘Ferryman?’ queried Gabriel. ‘Yes, to cross the river Styx.’

‘Of course!’ cried Gabriel. ‘I have some English coins.’ Nigel accepted a coin: a pound, not a penny. Then, with not a second’s hesitation, a cheeky grin creasing his face, he pressed the button.

I gripped Ellie’s and Becky’s hands; Becky clutched Craig’s. Not daring to breathe, we stared as the contraption pushed the barbiturate into Nigel’s body. Once the syringe had emptied, we rushed to enfold him in our arms. We had moments left.

‘I love you, darling,’ I whispered. ‘Love you,’ he murmured. Through my tears, I gazed, for the final time, into those eyes. There was no sadness there, no fear, just resolve, acceptance and love.

‘Be happy, Julie.’ One more kiss. ‘I’m feeling sleepy.’ Then he gave one last mesmerising, unforgettable smile before slipping into unconsciousness.

We embraced him as his breathing grew heavy, then became a snore.

His body slumped and his grip on the ferryman’s coin loosened before the sporadic rasp of his breathing faded to a muted hush and the soft whisper of his breath was no more. The only man I will ever love was dead.

Before I stepped away from Nigel’s body and out of that room, I tightened his fingers around the ferryman’s coin. This had been his final act of control, to ensure his passage from this life to the next. ‘Travel safely across the river Styx, my darling.’

Later, back in the hotel, the room was exactly as we had left it a little over an hour ago, but it seemed as desolate as a long-abandoned mausoleum. I almost expected Nigel to whirl in and demand a cuppa. But that wouldn’t happen, would it?

‘It’s what he wanted, Mum,’ said Becky. ‘We need to be happy for him.’

‘You’re not angry with him?’ I asked. ‘For leaving us?’ ‘Not at all,’ she insisted. ‘I’m so glad he could do this. On his own terms.’

‘Exactly,’ said Ellie. ‘Just wish he could have done it at home.’ As had Nigel. On his iPad he had left a final message to be posted on Facebook to all his friends. He stressed his belief in self-determination, dignity and choice — sentiments championed by the ‘Dignity in Dying’ campaign, but yet to impact on UK law.

Then he told everyone prepared to listen: ‘It gives me great joy, today, to announce that I have found the one and only cure for MND, but it is with great sadness that it means I have had to go to Dignitas in Zurich to end my life. It is such a shame that the laws of this country prevent me from doing this in my own home.

‘My decision was arrived at because I wanted to take back control of my life and take the victory of killing me away from this disease. I wanted to die while I am happy and can still smile and not be controlled by this wicked disease any longer. I wanted to die with dignity, instead of being tortured.

‘Some people may think it’s the easy way out but believe me it’s not easy to leave your loving family and friends. I’ve been “dying” to post this! Ha ha ha ha ha!!

‘Thank you and goodbye. XXX’

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



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