Tony Nicklinson RIP

We were on holiday with our family this past week in the Brecon Beacons. We weren't far from where we used to enjoy many an Easter break with them as children, in the Black Mountains. It's a seriously beautiful part of the world. In the old days, we had great enjoyment scrambling up the hills in the area, walking Offa's Dyke Path, exploring the streams and woods, making fires and barbecuing marshmallows - and, once, disastrously, a pair of trousers.... It was in the Beacons that I had my second big seizure - many years before, unconnectedly, I was diagnosed with ALS/MND. Now my holiday activity is largely of a passive nature from my wheelchair. No more hill-walking or exploring the woods and moorlands. No more extricating feet from boot-sucking bogs, or hastily throwing on a kagoule as the rain catches up with you, or manoeuvring the map around to align various landmarks and work out just where you are. No more rising the crest of a slope and discovering a breathtaking view bathed in sunlight....

And yet it's been a lovely week. Not really because of the views, though the view up to the Pen y Fan ridge from our barn conversion was great, sometimes shrouded in cloud, sometimes made bright by the sun, sometimes with sharp shadows of the morning or evening. Not really because of the change, though it was nice to see Jane not having to think about meals, since the younger generation took turns in preparing a main meal as they did in keeping an eye on me. What I most enjoyed was being in that environment of mutual respect and affection, which included me. That's what made it a love-ly week.

On Wednesday afternoon there was a gentleness when two of them broke the news to me, "Dad, Tony Nicklinson has died." I was lowered into my seat, as they told me more: "Of natural causes. Pneumonia. He hadn't been eating." I was sad, in one way, to hear it. He was a man whom I'd met and talked with of important matters, and with whom I shared a similar predicament, a fellow-dribbler and with a remarkable wife called Jane. I had admired his stubbornness. But I also reflected that God had granted him his two great wishes: first, to have his day in court; and second, to have his suffering cut short by death. Tony, of course, would not have looked at it like that. The idea of "God" was one of the things that made him angry. He would probably have preferred me to say that he achieved his day in court and that he precipitated his own end. I'm not greatly fussed by the language you use, but I am truly grateful that his suffering and deep unhappiness is over, that the fever of his life is over and his work is done.

Meeting the late Tony Nicklinson

The Times, which campaigns vigorously for euthanasia, covered Tony's death extensively on Thursday. Its use of loaded terminology in news coverage left much to be desired: "Six days after the High Court condemned him to live...". Later the article quoted his wife, Jane: "To all those religious groups, all the pro-life advocates who advised the family to cherish the gift of life, she had the same response: come down and look Tony in the eye, while you say it. Watch him dribble, hear him howl, and ask yourself again whether this is a life worth preserving?" At least one opponent of euthanasia was given that privilege, thanks to the BBC: BBC Inside Out Tony Nicklinson & me. I watched him and heard him. I saw his wistful misery as we gazed into each other's eyes. And actually, Jane, despite his frustration and his feeling of indignity (though I didn't see an undignified person), despite his incapacity and his anger, I think his was, or could have been, a life worth preserving. I saw a man of extraordinary determination. They say courage is not never being afraid, but carrying on even through the fear. So determination is not never feeling weary, but carrying on even through the exhaustion. Tony had bags of fighting spirit. That's what, I suspect, kept him going. Fighting for the idea that we should all have the right to choose how and when we die - because I think for him it was something more than that he should be in charge of his own dying, although he did feel that he was the object of unfair discrimination, being physically unable to commit suicide. Part of his argument was based on the inequality his condition subjected him to. Personally I think making it legal to take anyone's life is a bad principle. Tony's was a hard case, without doubt, but hard exceptional cases make bad law.

The tragic thing in my view is that Tony's fighting spirit was so directed to a negative and self-destructive end, his own death. We're about to see paralympic athletes who by sheer determination have overcome "impossible" handicaps to achieve heights beyond most of the fittest of us. In no way am I suggesting that Tony could have escaped his locked-in prison to achieve such physical feats, but he proved that he could win what The Times termed "victory" in other ways than physical - as indeed others with locked-in syndrome are doing like Gary Parkinson (Radio 5 Live report) or Bram Harrison (Independent report: Britain's bravest DJ). Their aims and interests are positive, and are not just about themselves getting better. I've no doubt they get fed up and weary with life, from time to time. It goes against the grain, as I know, to be constantly depending on others to survive.

And yet, here's the magic, which is so priceless to receive, to be loved by those around us actually makes life worth living. I love the BBC's Mark Clemmit's account of Deborah Parkinson, wife of footballer, Gary: "His wife is the most extraordinary woman I have ever, ever met. There was never a down moment. She keeps going and her dedication to her man is beyond belief. It says 'better and for worse' when you sign up and that's her attitude.

"They nearly lost him several times and Deborah was given options to turn off the life-support machine, but she wouldn't entertain the notion. She will keep supporting him."

In the end, it doesn't matter what we can achieve; it matters what we can receive. That's what makes life worth preserving. It is what makes life worth living. That's why I've had a good holiday. That's why, as my abilities decline still further, I hope I'll still be grateful for every day of life. I'm immensely sad that that wasn't enough for Tony, for without doubt he was cherished and loved amazingly by Jane, and Lauren and Beth, beyond what's "reasonable" to expect. Tragically for him the darkness blotted out the light. Ultimately humanity makes a choice and takes its chance. However I dare to pray that darkness has not had the last word. RIP.