Conundrum of a Death Foretold

http://www.nytimes.com/2012/08/28/world/europe/28iht-letter28.html

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LONDON — After all the triumph and hoopla and, yes, the self-congratulation of the 2012 London Olympic Games, the Paralympics beginning this week may seem eclipsed in advance. But to many, this second phase of all-consuming endeavor represents something beyond the striving for excellence among those whose athletic alchemy has transformed bodily perfection into medals of gold.

The reason, overwhelmingly, is that the Paralympics call on reserves of resolve that physical disability sometimes seems to deny, adding a psychological barrier to the limitations of challenged bodies. By example, Paralympians reject such prejudgment of physical constraints that once consigned the disabled to a forgotten netherworld.

But this summer has conjured forth other parables, raising disturbing questions of life and death.

For some, wheelchairs and prosthetic limbs may seem the very emblem of triumph over life’s vicissitudes. But for many, those same devices are prisons without hope of reprieve, symbols of ailments that preclude the striving for athletic redemption.

Among them, Tony Nicklinson, a 58-year-old Briton, achieved a particular and agonizing renown. Mr. Nicklinson himself had once shown athletic prowess as an avid rugby player, but a stroke in 2005 ensnared him in incurable “locked-in syndrome,” which he described as a “living nightmare.”

Paralyzed from the neck down, able to communicate the thoughts of an active mind only by blinking, dependent on caregivers, he had, as many columnists concluded, become a surprisingly loud voice in favor of what some people call the right to die.

This month, Mr. Nicklinson learned that a court had denied his request for a change in the law that would have permitted a physician to help him end his own life.

When word of the ruling reached him, Mr. Nicklinson showed another way of communicating: A tearful groan of inchoate agony burst forth from his desolation.

The issues surrounding the ruling played into a long-running and tortured debate, but, in the end, they came down to a judge’s decision that it was not for a court to change the laws forbidding assisted suicide or comparable actions that could amount to a crime. “These are matters for Parliament to decide representing society as a whole,” Lord Justice Roger Toulson concluded.

But Mr. Nicklinson did, in the end, find a grim denouement to his tragedy.

Six days after the court’s ruling, he died on Aug. 22 of pneumonia, exacerbated, reports said, by his longstanding refusal of life-extending medication and by his refusal to eat. A final, jaunty message on Twitter, relayed by his family, declared in part: “Goodbye world the time has come, I had some fun.” In some ways, it was a victory for his wish to die over society’s refusal to grant it.

But the thoughts inspired by his demise went further. Should life be truncated if the faintest glimmer shines through the dark carapace of disability and indignity? Does the very debate about assisted suicide legitimize the dark impulse that drives other people to take their own lives, leaving behind loved ones bewildered by a death they neither sought nor approved nor understood? Is death, in other words, best dealt with by consensus?

A soldier on the battlefield, for instance, may be assumed to understand the risks of the calling, and so the bullet or bomb that extinguishes life is part of the military’s age-old covenant. People reaching a full and fulfilling term may expect to die, and that expectation will be shared by those around them without complaint. Death, thus, is the ultimate distillation of that overworked word — closure.

But Mr. Nicklinson’s desire for an end did not have the consensus of the courts or, indeed, of a big slice of opinion, even if his plight drew on deep wells of sympathy.

“What Nicklinson was seeking was unpalatable to a mainstream society that refuses to engage with our mortality,” Sharon Brennan, a journalist suffering from cystic fibrosis, wrote in The Independent. “We are indeed a society that cannot abide talking about the end of life, let alone accept it.”

Some thought that Mr. Nicklinson’s struggle showed more about life than death. “In his pain, he momentarily transcends his condition to communicate to the world,” the art critic Jonathan Jones said in The Guardian before Mr. Nicklinson died. “That should make us wonder about the wisdom of ever making it permissible to end this terrible marvelous thing called life.”

More tersely, The Daily Telegraph concluded: “Mr. Nicklinson’s case was never about the right to die, but about the right to be killed.”

His family had its own take on a death long foretold. “RIP @TonyNicklinson,” his daughter Beth wrote on Twitter. “Couldn’t have asked for a better Dad, so strong. You are now at peace, we will be fine. I love you XXX.”