Martyn McLaughlin: I watched my dad die from MND, Richard Selley’s death should shame us all

Richard Selley, who has motor neurone disease, plans to travel to the Dignitas clinic in Switzerland to end his life
Richard Selley, who has motor neurone disease, plans to travel to the Dignitas clinic in Switzerland to end his life
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After watching his father die of motor neurone disease (MND), Martyn McLaughlin reflects on Richard Selley’s decision to end his life and laws in Scotland that mean he has to travel to another country to do so.

There is something discomfiting in the knowledge that this Friday, Richard Selley will die. The unsettling power in this simple statement of fact is derived from its implicit ordinariness. You might be planning to decorate the spare room that day, or a trip to the cinema. It just so happens that Mr Selley has set it aside to end his life.

Yet those four words belie an even more unnerving reality. To do so, he must travel to a foreign country, far from friends and family, and at considerable expense and stress. What an indignity to foist on a man who has endured the ravages of motor neurone disease (MND) for nearly five years.

The final ordeal, like all those before it, will be borne stoically by the 65-year-old and his wife, Elaine. As they prepare to travel to Dignitas in Zurich, they know at least an end to the suffering is near.

“Although parting from each other will be unbearable, she knows that I cannot battle with this awful disease any longer.” Mr Selley explained on Monday. “I am exhausted by it, and it is time to go.”

Such resolve in the face of a progressive terminal illness brought back painful memories of my own.

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Last week marked the first anniversary of my father’s death. He, like Mr Selley, was a relatively young man, fading fast in the twilight of his life as MND claimed his mobility and speech, before threatening to eradicate whatever traces of independence that remained.

He was diagnosed last March. The five months that followed were marked by a slow, inexorable descent that forced us to busy ourselves in the face of the inevitable.

A building warrant was secured for a wet room that would never be constructed; a blue badge arrived to help make the food shop easier, even though by then he could no longer manage solids – these mundane little practicalities and a thousand half-forgotten others form the lumpen reality of a life reduced to preparing for death.

The hardest part was not knowing how long the wait would last. Would the suffering be measured in months, years, or decades? If the dreadful toll MND takes on the body is its most devastating legacy, the way it makes mere guesswork of the rate of deterioration is its cruellest.

When things veered suddenly into a downward spiral at the start of August, it seemed the time he had left would be briefer than even the gravest forecast. There was dismay, confusion, and trauma.

Yet that sharp decline was also accompanied by an unspoken hope that the end was near, as the resentment and frustration my father had been harbouring fell away.

One night, as he was coming round from a choking fit in the soundless dark, he decided he would no longer fight. When he explained why in the light of day, he was composed, content even. He did not expect any resistance, nor did he encounter any. What was there to be said?

As Mr Selley observed, there is a profound sadness in embarking on that final journey, but at least despair and anger are no longer unwelcome passengers.

So it was with my father. Having resolved to face death, life regained some of its meaning. We would sit together content in silence instead of being vexed by it. It was still hard to converse, but in the absence of words, that brief flickering of autonomy brought a fleeting calm.

Three days shy of September, he managed to pen a short message on a whiteboard kept by his bedside, one shoogly letter at a time. “I am not afraid,” it read. “I love you.” Within hours, he found the peace he craved. He was free. We all were.

There was an extraordinarily powerful release in saying goodbye, one that I hope Mr Selley and his family find. But it could, and should, have been so much easier.

It was only by chance that my father was spared the hell of becoming unrecognisable to his loved ones, left a prisoner in his own body, serving an indeterminate sentence.

The easiest thing, as his son, would be to convince myself that those last days and weeks were comfortable in their entirety. It would be a way of finding closure and assuaging whatever guilt I felt at having to work and look after my own family while navigating the role of carer. All that would be convenient. Yet it would not be sincere. Morphine masked the pain caused by his muscles whittling away to the bone. No drug, however, could disguise the distress and disorientation – a flurry of new faces, strange rooms, and changes of medication.

The worst of it, for him and me, was a gnawing sense of fear – the kind that kept you awake at night and startled you awake in the morning – that his last jolt towards the end would stop short, and that he would be left suspended. Trapped.

Waiting. Waiting. Waiting.

It is bewildering that Mr Selley is being forced to go to such lengths to avoid this grim fate, and that others who lack his resources have no way of being spared it. In a modern, supposedly compassionate country, this illusion of choice is inhumane.

At a time when civic Scotland is discussing the inalienable right to assemble of those who participate in sectarian parades, and Holyrood is preparing to consider granting permanent voting rights to prisoners, how is it we remain incapable of extending the ultimate human right to those in extreme suffering?

No one is under any illusions that assisted dying is anything other than a fraught and contentious issue, but in a little over 48 hours, Richard Selley will die. He takes immense comfort in that. The rest of us should be humbled by his strength, and utterly shamed by it.