Julie Casson on her husband’s liberation from motor neurone illness

We arrived on the luxurious resort in Zurich within the motorhome we’d employed for the 800-mile drive from Scarborough to Switzerland. Flying Nigel there or going by practice would have been preferable however was not possible given the deterioration in his situation.

By likelihood we’d come throughout this car already outfitted for disabled use, with ramp, profiling mattress, ceiling hoist and bathroom. ‘Mabel’, as we named her, was good.

On the afternoon of April 23, 2017, our grungy, whacked-out carcass of a car, as dishevelled and bleary-eyed as its passengers after 24 hours on the highway, drove right into a resort automotive park stuffed with Porsches and Bentleys. An officious concierge flapped his fingers in disgust and tried to show us away earlier than we wafted our reservation in his face.

We had made it. My bedraggled, stinking, exhausted household — Nigel, after all, my severely sick, disabled, but contented, husband, me, his spouse, and the kids, Craig, Becky and Ellie — had been put in in Zurich’s most interesting resort. We had introduced him right here to die, at his request, and finish his ten years of struggling with motor neurone illness (MND).

When we had been ushered to our rooms, Ellie and I inspected the amenities. The cell hoist, sling and disabled bathe chair had been current, as requested. But there was no seize rail in the bathroom and we would have liked no less than six extra pillows. I’d by no means prop him up with out them.

Regardless of how a lot we had been ready to pay, or how unique the resort, taking Nigel away from the up-to-the-minute, customised, disabled-compatible sanctuary he had loved at dwelling emphasised the diploma of his disabilities.

Nigel, although, was having enjoyable, pirouetting across the room in his wheelchair, extra like an adolescent than an ageing invalid.

‘Hey, Julie,’ he mentioned, a devilish glint in his eyes. ‘We’re gonna sleep in the identical mattress for the primary time in years.’ I answered: ‘Don’t you be getting any concepts.’

Shortly after, as organized, a health care provider arrived — the one who, just a few weeks in the past, after reviewing Nigel’s case, had granted the provisional inexperienced mild for his accompanied suicide.

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

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

‘Yes,’ mentioned Nigel, with out 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 physician then left, saying he’d come once more tomorrow.

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

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

‘Never better.’

Then the physician repeated yesterday’s questions, to make sure nothing had occurred in a single day to set off doubt in Nigel’s thoughts.

Nigel responded with that very same daring willpower and the physician mentioned: ‘I will write the prescription [for the lethal drug] today.’

Nigel drew a protracted, shuddering breath. The green-light standing for his dying had switched from provisional to particular. He had handed the take a look at. He would die tomorrow. ‘Thank you very much,’ he mentioned. ‘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 mentioned. His ten-year ordeal with MND, which had decreased him to a shell of his former self, was about to finish. He was going to get his want: to die smiling.

We had lunch, savouring a divine bottle of wine, then one other and one other, earlier than the arrival of the person from Dignitas who would escort Nigel to his dying. He was round 50, with type, twinkling eyes and a large smile. His title was Gabriel. As in angel, I believed 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 fingers with the remainder of us and requested: ‘You will all be present tomorrow?’

‘Of course,’ we chorused.

‘The doctor has written the prescription,’ he informed Nigel, and went by way of the identical questions because the physician. Nigel was as decided 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 method,’ and lifted up his T-shirt to show the gastric tube he’d had inserted years in the past simply in case he misplaced the power to swallow. ‘This handy little tube should do the job,’ he mentioned.

I recall the day the tube was fitted. His physique recoiling in shock because the surgeon stabbed his abdomen, the gagging because the tube invaded his throat, the infinite, pain-racked night time no quantity of morphine might suppress. Had he endured all that for this? Was he planning this to this point again?

Gabriel reached his final query: ‘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 household. Craig, Ellie and Becky had been immersed of their ideas. Were they, like me, making an attempt to course of what was occurring? 

Were they making an attempt to simply accept, after all of the months of planning, the infinite alternate of emails, the overcoming of procedural and medical hurdles, the conquering of quite a few logistical challenges, that now, lastly, the preparations had been in place? Their dad would die tomorrow.

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

That night time we ate foie gras and vichyssoise with poached quail egg and smoked salmon, spring lamb or beef fillet for the primary, inexperienced asparagus and candy potato mash. An alpine mountain of chocolate mousse closed the meal. All guzzled down with the assistance of superb Swiss wine.

The speak was all of blissful recollections, with joyous laughter. Then Nigel drained the final of the wine, inclined his chair to upright and mentioned: ‘I’m so happy with you all. I really like you very a lot. ‘Don’t mope after I’m gone. I need you to be blissful.’

He sagged in his chair. The lengthy day, emotive dialogue, to not point out the wine, all taking impact. Inhaling deeply, he summoned the desire to impart one other piece of recommendation to the kids. ‘Whatever you do, have fun. Lots of it. I’ll see you within the morning.’

Then he and I had been alone, simply the 2 of us, and as I held him on this our ultimate night time and informed him I cherished him, he mentioned: ‘Be happy again. When I’m gone.’ I’ll by no means be blissful once more, I believed. I couldn’t conceive of life with out him. ‘I’ll strive,’ I lied.

When morning got here, Nigel was already awake. ‘How are you?’ I requested. ‘Are you nervous?’

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

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

No one had a lot of an urge for food for breakfast. I chewed on a bit of bread; Nigel nibbled on a little bit of cheese. ‘Feel a bit sick,’ he mentioned. ‘Must be the wine last night. Can’t be coated in vomit after I croak.’

I wasn’t satisfied it was merely the wine making him really feel sick. Perhaps he was the tiniest bit anxious in any case?

On his iPad, he checked his checking account, simply as he did each morning. For years, this piece of expertise had been his lifeline, his gateway to the world: the means to speak and contribute to discussions; to share his playlist late into the night time with revellers dancing round his mattress; to impose jokes on pals and to play poker with like-minded gamblers.

Facebook had elevated his life and given him function. Through it he reconnected with schoolfriends, Army mates, joined a neighborhood of fellow MND victims and befriended scores of individuals from around the globe.

Now he handed it to me. ‘I’m completed with it,’ he mentioned.

We took our ultimate household photograph. Five smiling faces, none so jubilant as Nigel’s, captured in Zurich’s most luxurious resort foyer, looked like a household heading off on an exciting day trip. 

And they are saying that images by no means lie. The taxis I’d ordered the night time earlier than had been right here. ‘Let’s do that,’ mentioned Nigel, racing for the door in his wheelchair. I handed our driver the ready, no-room-for-error postcard, bearing the deal with of our vacation spot.

We drove into what seemed to be an industrial property, earlier than coming to a halt exterior a featureless, two-storey field of a constructing, with a cladded blue exterior. There was a Lidl grocery store on the nook. 

Did the individuals stocking up there realise what occurred right here as they went about their weekly store? Who might think about such extraordinary exercise occurring in such an abnormal setting?

Gabriel was ready exterior. ‘Nigel,’ he cried, greedy his hand. ‘Excellent to see you. Come this way.’ He was as courteous as a bunch welcoming friends for lunch.

We entered a dimly lit, square-shaped room. The window blinds had been half-closed — towards prying eyes, I assumed. Additional mild was supplied by two old school shaded normal lamps.

Despite innumerable references within the media to the Dignitas ‘clinic’, there was nothing remotely medical about it. It couldn’t be thought of trendy, both. The furnishings was primary; paying homage to a funds vacation rental.

A two-seater sofa and chairs, coated in a cloth evoking recollections of my grandma’s parlour, had been grouped subsequent to a espresso desk bearing a jug of water, ingesting glasses, a vase of tulips and a collection of Swiss sweets. (A considerate addition, the sweets — the barbiturate tastes vile, I perceive.) There was additionally an opened field of tissues.

Against the wall was a hospital mattress coated in a single sheet. A gilt-framed image of the Alps hung above it. The far wall was occupied by a round picket desk, upon which was a field containing a gadget topped with a big pink button and a tube.

Anna, launched to us as Gabriel’s colleague, supplied us tea. Craig, Ellie, Becky and I gaped at her like she’d simply proposed all of us snort coke. The sudden conventions of well mannered hospitality, as if we’d popped in for afternoon tea and a jolly natter, appeared absurd.

Nigel, although, was fully relaxed and signalled ‘No thank you’. I opted for espresso, not wishing to seem impolite. Gabriel invited us to sit down and Nigel positioned his wheelchair within the centre of the room, grinning, his eyes glowing with mischief, pulling the form of face you pull if you’ve executed one thing naughty, like breaking wind in a raise.

‘OK,’ mentioned Gabriel. ‘Paperwork first. Nigel, can you sign your name?’ ‘Yes.’ Then Gabriel gripped Nigel’s shoulders and stuck him with a penetrative stare as he enunciated every phrase with exaggerated care.

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

‘Yes.’

‘OK,’ mentioned Gabriel, stepping again. ‘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 simply been issued with the housekeeping directions for the hearth exits and lavatories.

Gabriel requested once more: ‘Nigel, are you sure you wish to do this today?’ ‘Yes,’ mentioned 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 thoughts. Craig’s and the women’ shoulders drooped and one after the other 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 paperwork handed to him, together with one confirming that he had voluntarily dedicated suicide and had been totally knowledgeable by Dignitas of the method.

Gabriel distributed the anti-emetic into Nigel’s tube. This was it. It was really occurring.

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

Enigma’s poignant strains crammed 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 all the time be my hero, Dad.’

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

Nigel held out his hand for me. As I peered into his eyes, these fathomless swimming pools, I knew I might by no means once more see or really feel such overwhelming and unconditional love.

‘It’s been a pleasure to be your husband, Julie,’ he mentioned. ‘You’ve made me very blissful.’

My coronary heart heaved in my chest and the clenching of my throat made me dizzy however I used to be decided to not cry. ‘You’ve made me blissful too. I’ll miss you,’ I mentioned.

He drew me in direction of him and I rested my face near his.

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

Then he mentioned: ‘I’m prepared. Let Gabriel and Anna again in.’

Gabriel took the red-buttoned gadget from the field, connected a syringe bearing the deadly barbiturate and positioned it inside Nigel’s attain. He fitted the cylinder into Nigel’s gastric tube. Like unwilling members dragged in to witness a macabre ceremony, we balanced on the sting of our seats, stiff-backed and silent.

‘When you’re prepared, Nigel, press the pink button.’ Nigel glanced at us and snickered: ‘I’ve all the time wished to press the pink button.’

‘Ready?’ mentioned Gabriel. ‘Ready,’ affirmed Nigel, however 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 fingers; Becky clutched Craig’s. Not daring to breathe, we stared because the contraption pushed the barbiturate into Nigel’s physique. 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 ultimate time, into these eyes. There was no disappointment there, no concern, simply resolve, acceptance and love.

‘Be happy, Julie.’ One extra kiss. ‘I’m feeling sleepy.’ Then he gave one final mesmerising, unforgettable smile earlier than slipping into unconsciousness.

We embraced him as his respiration grew heavy, then grew to become a snore.

His physique slumped and his grip on the ferryman’s coin loosened earlier than the sporadic rasp of his respiration light to a muted hush and the comfortable whisper of his breath was no extra. The solely man I’ll ever love was lifeless.

Before I stepped away from Nigel’s physique and out of that room, I tightened his fingers across the ferryman’s coin. This had been his ultimate act of management, to make sure his passage from this life to the following. ‘Travel safely across the river Styx, my darling.’

Later, again within the resort, the room was precisely as we had left it just a little over an hour in the past, however it appeared as desolate as a long-abandoned mausoleum. I nearly anticipated Nigel to whirl in and demand a cuppa. But that wouldn’t occur, would it not?

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

‘You’re not indignant with him?’ I requested. ‘For leaving us?’ ‘Not at all,’ she insisted. ‘I’m so glad he might do that. On his personal phrases.’

‘Exactly,’ mentioned Ellie. ‘Just wish he could have done it at home.’ As had Nigel. On his iPad he had left a ultimate message to be posted on Facebook to all his pals. He harassed his perception in self-determination, dignity and selection — sentiments championed by the ‘Dignity in Dying’ marketing campaign, however but to affect on UK regulation.

Then he informed everybody ready to hear: ‘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 simple method out however imagine me it’s not straightforward to go away your loving household and pals. I’ve been “dying” to submit 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 duplicate for £12.59 (provide legitimate to March 16, 2024; UK P&P free on orders over £25), go to mailshop.co.uk/books or name 020 3176 2937.