He can't really eat. He can't put a piece of food in his mouth, or run his tongue over it to savour the taste, or smack his lips, or chew. He can't swallow, unless someone puts a spoon on his tongue to make his throat contract, or dabs his lips to make the muscles move. He can't speak. He can't laugh. He can't raise an eyebrow. He can't scratch an itch. But he can cry. Tony Nicklinson can't control the muscles in his face, or the way it sometimes turns into a mask of grief, or wipe the strings of saliva that sometimes hang from his lips, but his tear ducts seem to be working just fine.
Before the headache that hit him in Athens seven years ago, everything in his body worked fine. He jumped, with parachutes, out of planes. He leapt, in harnesses, off cliffs. He was handsome, and successful, and happy, and fit. He loved people, and parties, and fun. Now he's carried in a hoist from a bed to a chair. "This is my home," he said to the TV cameras on Channel 4's Dispatches on Monday. "It's also," he said, "my prison."
The headache in Athens was a stroke. The doctor who saw him didn't think he'd survive. Now he wishes he hadn't. He loves his wife, and his daughters, but he can't hug them, or kiss them, or even speak to them, except by blinking at letters connected to a computer, and now there's only one thing in the world he really wants. What he really wants is to be allowed to die.
It's what his family wants, too. "There are people out there," said his wife Jane, whose love for her husband shines out of her eyes, "some in a worse condition than him, who have a full and meaningful life, which is great for them." But life for him, she said, wasn't. Life for him, she said, was "just not worth living".
The trouble is that Tony Nicklinson can't die. He can't, unless he decides to starve himself, which might take months, end his life unless he gets someone else to help. Which, under British law, would be murder. "In Britain," he told Lord Falconer, who recently produced a report on assisted dying, "everyone is legally allowed to commit suicide, but I am denied the right only because I am so severely disabled. How," he asked, "do you defend this discrimination against me?"
It's a question he, or rather his lawyer on his behalf, also raised in the High Court yesterday. His life, said his barrister, was "dull, miserable, demeaning, undignified and intolerable". He wasn't seeking, he told the judges, to "introduce an all-encompassing new regime legalising euthanasia and assisted suicide". What he wanted, he said, was for the court to allow "the common law defence of necessity" to a doctor who helped him die. What he wanted, in effect, was for the law to answer the other question he asked Lord Falconer: "How would you feel if it was you?"
What he wanted, in other words, was for us to answer a question almost nobody can answer. Those of us who can still move, and talk, and laugh, and sing, can't know what it's like to lie in bed at night and not be able to move a single part of your body except an eyelid. Some of us may have felt, at times, that being dead might be less hard than being alive. Those of us who have might bless whatever it was that stopped us from doing anything about it and hope that something similar might stop other people from doing anything about it, too. But most of us don't know what it's like to feel you want to end your life but can't. And most of us would look at the tears trickling down Tony Nicklinson's gaunt cheeks, and at the wife and daughters who want what he wants, and feel, for his sake, and for their sake, that we want it, too.
But the law isn't about how we feel. The law isn't about how you feel if you were once healthy and fit and happy, and now aren't. The law, as Lord Falconer said on that Dispatches, is the same for everybody. "If people want to kill themselves," he said, it's an "entirely private matter", but "they can't kill somebody else". The law, as the disability rights campaigner Kevin Fitzpatrick also said on the programme, is meant to offer protection. "When you develop a society where some people judge that other people's lives are not worth living," he said, "that's the Rubicon."
If you're disabled, and have decided that you don't want to live, but that the only way to end your life is by starving (which you can still do, though it won't be very pleasant) then it's very, very sad for you. It's sad, and hard, and frustrating, and unfair. But quite a few things in life are sad, and hard, and frustrating, and unfair. And if the law that makes you sad makes most people safer then maybe your sadness, and the sadness of the people who love you, is the price we all have to pay.
And maybe, if you're sad and frustrated and angry, and tell newscasters that you never look at your family and think you can't bear to leave them, because you can't bear to "tolerate so many indignities", you might think about the tweet you sent the 26,834 followers you gained since joining Twitter on Sunday. "What joy," it said, "it is to be loved." And maybe you'll look at that word "joy" and think that the good thing about still being alive is that you can still change your mind.
Twitter: @queenchristina_Reuse content