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.

A mixed news story

I was going to entitle this "A sad news story", but I can't honestly do that, although I'm sure that the protagonists, Tony Nicklinson and "Martin", would bitterly disagree. In fact their view would be that they've been the victims of an egregious miscarriage of justice - as today the High Court ruled against their application to allow a professional to end their lives of Locked-in Syndrome. As readers of this blog will be aware, Jane and I spent a morning with Tony and his wife, Jane, in their home last June for a BBC programme. As I don't know "Martin", I'll just talk about Tony's case.

What's good about this story? you might ask. Primarily, it's good that a precedent to legalise killing has been resisted. Dress it up how you will, in whatever humanitarian, compassionate terms, deliberately to end life is killing. The three judges, who said the court had been “deeply moved” by both men’s circumstances, ruled that such matters were for Parliament to decide. Since English law is case-law, one ruling in favour of assisted suicide would open the door for others - with all the adverse implications for the disabled, senile and terminally ill that could usher in, as I've rehearsed elsewhere. For three appointed judges to change the law so radically, making deliberate killing legitimate on occasions, is patently ultra vires, beyond their powers. 

I was sorry to read in The Independent, briefed, no doubt, by Tony's solicitors, that his "physical condition has deteriorated in recent weeks leaving him in constant pain and discomfort", which was a reason for seeking an expedited appeal. When I met him last year, he told me that I was better off than him in that I had a degenerative condition and he didn't. I was, and am, certainly able to do more than he is, but such comparisons are odious, and otiose. At some point in today's reporting of the case a forecast of 25 years of further locked-in state was cited. It seems that might not be the case.

I pointed out to Tony last year that he was legally entitled to refuse treatment. If, for example, he contracted an infection, he could refuse antibiotics and ask just to be kept comfortable with painkillers and sedation. Presumably, Bindmans, his expensive London solicitors, will have advised him about living wills and have the know-how to produce one in his situation. He's not actually condemned to live. And so, on the Channel 4 News, when his wife had just been told that an anonymous "benefactor" had offered to pay for him to travel to Dignitas to end it all, she havered and hesitated and concluded that he'd probably not want to accept because he didn't see why he should travel to an industrial estate in Switzerland. He'd rather fight for the right to be killed here. I think that's very much the point; Tony's personal crusade to control his own death has become his reason for living. And that seems to me very sad. It's such a depressing and life-denying purpose. Although he says he wants to die, he doesn't. He wants to live to assert the ultimate statement of control, suicide. Maybe for it to be in the public eye is just the intention of his advisers.

When I talked to him I asked Tony whether there was nothing good about his life. He understandably said, "No." "Not even the love of your wife and your daughters?" I think his reply was, "That's beside the point. It's a matter of equality." Well, in my view, love trumps equality, and to be loved, no matter what the cost, makes life worth living, no matter what the limitations. Even the prisoner locked in windowless solitary confinement survives on the knowledge he is loved; indeed that alone gives his life value. Not to enjoy that makes for bitterness and despair. I listened to Tony's sobs while Jane talked to reporters, and thought, "How tragic to pin such hope on such an outcome and to miss the blessing of knowing the Ultimate in love!" 

Whatever next?

In his blog, the BBC sports editor, David Bond, ends his summary of the London Olympics, headlined "How can Rio follow London?" with "After the last three weeks the question might now be: How can anyone hope to follow London?" Boris Johnson fell into the same mindset when he declared, "If you were to say to me that we have just held the greatest games ever in Britain, I would say you are on the right track." The implication seems to be that it's impossible to conceive of anything bigger and better than LOCOG's staging of the Olympics. Mr Bond needs to remember that the Olympic motto isn't "maius et melius" (bigger and better). As I suspect her Majesty would say, "Good evening, Mr Bond, may I remind you of the Olympic creed? 'The most important thing is not to win but to take part, just as the most important thing in life is not the triumph but the struggle. The essential thing is not to have conquered but to have fought well.'"

As I've intimated before, the arms race of putting on a more impressive show than the preceding one or ones is folly. I don't know how to say it in Brazilian Portuguese, but my suggestion for 2016 is Os Jogos Olympicos Simples, the Simple Olympics, with a touch of Carnival. I think they'll manage, somehow. Meanwhile let's stop making the Olympics out of the reach of all but the richest countries - of whom Brazil of course as a BRIC nation is now one. How about putting some sponsorship into countries that need it?

PS Am just watching the closing ceremony a few hours late - what a monument to decadence and cultural arrogance - up to the handover! A shame after a thoroughly positive festival of sport. I will say no more.

Olympic mottoes

I was a bit saddened to hear our leading politicians cashing in on Great Britain's relative medal success in the Olympics, and banging on about competitive sports in schools. Not that I think they're out of place there, but I do think that there's a danger of overemphasising winning. School football pitches are already marred with over-ambitious underachieving parents screaming on the touch-lines at their poor offspring. It is plain ugly

The Olympic motto is "Citius, Altius, Fortius", which is Latin for " Faster, Higher, Stronger". All right, I suppose, but I agree with my friend, Brotherly Love, who wrote: "My motto for the Olympics would be: 'Who does the best his circumstance allows, does well, acts nobly - Angels could do no more'. That was a favourite of my dear old Dad (b. 1875) who only ever asked that I would 'do my best'." Measuring yourself against yourself and not against others must ultimately make for happier and healthier people.

As the Marathon moved past St Paul's Cathedral, I learned about the origin of the Olympic Creed. It was from a sermon there for Olympic champions by Bishop Ethelbert Talbot of Pennsylvania in 1908 that the Olympic Creed derives. The Olympic Creed, still used to this day, reads: "The most important thing in the Olympic Games is not to win but to take part, just as the most important thing in life is not the triumph but the struggle. The essential thing is not to have conquered but to have fought well." I think Baron de Coubertin, the modern Games' founder, did better in selecting that than the motto.

I don't like to end on a sour note, but I was disappointed to hear a commentator in the euphoria after the achievement of former Somalian refugee in the 5000 metres saying something like "Mo Farah, before the end of the year you'll be known as Sir Mo Farah." That's something I bridle at, the automatic expectation of New Year's or Queen's Birthday honours for successful sportsmen. It was a practice Tony Blair introduced, with the wholesale gong-giving to the Ashes' winning team. It seems to me they've already had their reward. It's a somewhat cheap method of politicians currying electoral popularity. A friend of mine defended the practice on the grounds that sporting success makes the country "feel better". Well, a lot of people contribute to the nation's well-being - who are not paid handsomely for doing the thing they enjoy, and receive little recognition for it.

Medals don't matter

"Can there be anything better?" I asked in my previous post, referring to the Olympics. Having watched the Men's Hockey semi-finals last night - since it was the sport I was best at, which isn't saying much! - I guess the English team would definitely say, "Yes"! After their 9 - 2 drubbing by the Netherlands (No gloating, Otto!) their captain, Barry Middleton, was given the traditional once-over by the merciless BBC commentator. The worst possible outcome would be coming fourth. Fourth in the Olympics - it's not bad, is it, after all? And yet commentators seem to regard anything outside the medals as failure - which I suspect reflects the attitude of the UK's Head Coach, Charles de Commenee.

I prefer the attitude of my ex-pat Australian friend, Liz Jones. Australia of course has had a far leaner Games than Great Britain, and I suspect sporting success is dearer to the Ozzie psyche than to us. "After hearing a newsreader saying this morning, 'Finally some gold medals, now we can be proud,' I just had to make a comment, to even make it to the Olympics is HUGE - I am proud of all of them, medals or not - they have given their lives to reach where they are now.... Yes it's fantastic to win the gold - but don't bring down the inner spirt of all who have tried so hard. I will now get off my soap-box...." Well said, Liz.

from Daily Mail

This morning I'm sorry that the BBC has completed ignored the achievement of unassuming Kenyan, David Rudisha, achieving the sole world record of the Games, in the 800 metres, mentioning only Usain Bolt, the self-appointed "legend", and our own three gold medallists of yesterday. What was remarkable about the race was the way he seemed to pull all the other runners with him so that each achieved either national or personal best times. It was a beautiful race. I think of the running track at Chogoria High (Senior) School where I taught for a year before the days of Kipchoge Keino in which the lane lines were carved out with pangas and even in those days amazing high-altitude athletics took place. Then the school's motto was something like "Thiaga Nakio Mbere" - which means, in the local language, "Press on towards the mark". That's really more like the point. It's not to achieve metal gongs you have to leave behind. It's to persevere towards the goal, as St Paul expressed it: "I press toward the goal for the prize of the upward call of God in Christ Jesus." 

I've always appreciated the prayer of Ignatius of Loyola. It's a better perspective than regarding completing the race but not winning as failure: 
Dearest Lord, 
teach me to be generous;
teach me to serve You as You deserve;
to give and not to count the cost,
to fight and not to heed the wounds,
to toil and not to seek for rest,
to labour and not to ask for reward
save that of knowing I am doing Your Will.  
In the end we won't be asked if we came in first; we'll be asked if we persevered faithfully to the finishing line.

PS Sadly I'm too late to prevent Dutchman Otto's satisfaction. He has just written: "the NINE-TWO tasted wonderfully well"!

Could there be anything better?

It's exceeded all our expectations, I think it's fair to say - the first week of the Olympics, that's to say, for "Team GB", and it looks like continuing that way. I'm told we even top the athletics medals table for a time... Could there be anything better for our rather depressed nation?

We're just back from our annual visit to New Wine. That's not, as a friend once thought, a festival of tasting the latest Bordeaux vintage. It's in fact an association of churches and church-leaders who believe that the divine person of the Holy Spirit was neglected in the life of the Church - much to its detriment. Every year they hold annual conferences near Shepton Mallet and Newark in England, attended by about 30,000 people, plus more in other countries. A week ago on Sunday we had tea with one of my oldest school friends, Alan, and his wife, Jo. It's many years since I've seen them and Jane had never met them. Jo, as it turned out, had visited New Wine for one day the week before. In an email later she wrote:
"...Would love to know how you found it.
I'll follow what you write on your blog…"

With that challenge etched on my mind, this posting is dedicated to you, Jo! However, I'm going to try and explain how I found it for those of you who may be sceptical or "iffy" about the whole faith thing, and especially of what's been conveniently and quite inaccurately caricatured as "happy-clappy religion". So here goes.

First I have to say this is not the assessment of a brief in-out journalistic foray. I reckon we've been going for the last seven or eight years. For some years we went with members of our church and since retiring we've "freelanced". So I suppose you could say we've had some in-depth exposure. Secondly, although I try to see the best in people, I'm not an utter sucker. My critical faculties haven't retired. So I have seen some imperfections in some vintages - but this year, in my opinion, was an impressive one. Not that it started that way for either Jane or me. Maybe we were tired, but, if we were, we were more tired when we left. For me the visibility was poor and the music was too loud in the main venue. Fortunately there was an escape route in the form of the Olympics marquee which was streaming various channels most of the time - not that Great Britain got off to a good start either. In the mornings we opted for the second main venue where the music didn't seem so loud and cheerful Scottish pastor from Northern Ireland, called Scott, was talking about the book Ephesians, which might not sound that interesting, but proved to be extremely so. Alan Scott's theme, which echoed that of the book, was that the Church's rôle was to love the world as God does and in fact to take that love out to communities and society. There was no quarter for a cosy clique mentality. It was a call for social engagement at every level, starting with individuals. Although I concurred with the sentiments, I can't say I was stirred. 

By the Wednesday when we drove to Sidmouth to celebrate her father's 90th, both Jane and I were, as it transpired, separately feeling this would be our New Wine swan song. We stay in a delightful self-catering cottage within easy reach of the showground, but it's an early start and a late finish. On the site - it's where the Bath and West Agricultural Show takes place - Jane pushes me in my wheelchair over rough tracks, up awkward ramps, across grass and it's hard work. The previous week had enjoyed glorious sunshine; our week had quite a lot of rain - and so sometimes Jane was splashing through streams in her flip-flops. (It was fine for me, of course, six inches in the air!) We were, I think, both feeling our ages and not inspired enough to make the effort again. It would have taken either one of us to suggest staying in for the night to keep us from going in for the evening that day.... But, as Mr Scott memorably invited us to tell the person sitting next to us (only Jane, in my case - what a relief!), "Your but is too small." 

What happened that evening? Well, there were two of my favourite worship songs, "Amazing Grace (My chains are gone)"  and "Bless the Lord, O my soul (10,000 Reasons)", and certainly a challenging talk given by Charlotte Gambill from Bradford's Abundant Life Church. But Jane had a personal spiritual experience and I was prayed for, and from then on things were different. There had been a seismic "But". I think it's reasonable to believe it was a "But God" - and that's for two reasons: first, that we'd not gone with any expectations or even hopes. We'd not turned up wishing for some special revelation; in fact, I'd say it was rather the opposite, a bit disgruntled and a bit sceptical. I even stuck ear-plugs in to damp down the invasive music! And Jane had commented that she didn't want to be challenged that evening. We weren't exactly suggestible. Secondly, neither of us invited what we experienced. It came "out of the blue". I should explain that New Wine has a tradition of "ministry", that is inviting people to come forward to be prayed for, usually at the end of a meeting. I'm not averse to the practice. But neither of us felt inclined to that evening. God, it appears, simply and unexpectedly responded to Jane's personal prayer before it was completed where she was standing, and afterwards sent some stranger to embrace her sadnesses. I was heading to leave, unprayed for, when a friend of Jane's and two others asked if they might pray with me. I don't remember their prayers, but I do recall the sense of God caring about me, that he'd not consigned me to the scrapheap - which that night was important in view of Jane's being "surprised by joy".
That's not the end of the story by any means. However it did mark a sea-change for me - which, as it turned out, was a good thing.

My sleep was not the best that night, in that I woke quite a bit. But next morning I seemed none the worse, and we headed up the road again for another day of chance encounters and planned sessions. This time Alan Scott’s teaching stirred me more, and he showed this uncanny knack, or sensitivity to God’s voice, of knowing what was wrong with people. No doubt cynics would say that simply on the law of averages in a group of more than a thousand you’re bound to have a number of people who’ve had reconstructive surgery and have metal causing them problems. But it was more specific than that. It did occur to me in this connection that second-hand accounts aren’t sufficient. Even seeing miracles with your eyes still leaves room for disbelief. I could tell you of individuals I saw doing things they couldn’t previously, people out of pain for the first time, scar-tissue restored, but I don’t suppose it would convince you - but then I don’t believe that was the point at all. If miracles have a point, it is, I think, to show the individual that the God who loves the cosmos also cares about them. And that is something which is very hard to credit.

I hesitate to tell you about my own minor miracle which happened the next morning. Although I describe it as “minor”, I have to say its impact on me has been major. There’s a phrase in the prophecy which Jesus applied to his mission: “to bestow on them... a garment of praise instead of a spirit of despair”. You’ll understand that deep in diseases like MND lurks “a spirit of despair”. For me it’s symbolised in the longing to dance. My friend, Louise, who has Muscular Dystrophy, introduced me to the song by Lee Ann Womack “I hope you dance”: 
“Promise me that you'll give faith a fighting chance
And when you get the choice to sit it out or dance,
I hope you dance  I hope you dance.” 
I wasn’t thinking about it at the time, but when someone crossed the aisle and asked me to dance, to be honest, my mind freaked out. “You’re joking me, aren’t you?” I thought to myself. “Have you any idea what’s wrong with me? You’re not very tall, are you? Do you know I had a fall this morning and it took three people to get me back on my feet? You must be joking.” I’ve no doubt my fear was obvious in my eyes, as I desperately looked at Jane to rescue from this madness. However, Heather didn’t seem phased in the least. “I think I’ve heard God telling me, ‘Go and ask that man over there to dance with you.’” She didn’t look mad, I must say; just kind and calm. As she and Jane helped me to my feet on rigid legs, she said with a smile, “I am a physio. I won’t let you fall. Don’t worry.” Easier said than done! Yet it wasn’t too many minutes before I did stop worrying, and actually relaxed! She held me in a waltz hold. I admit my leg muscles were obdurate, but I can find no better expression than that my spirit danced - which is something I have not for a long time, if ever, experienced - a simple sense of being in time and in tune with praise. I discovered that it’s possible to stand and enjoy worship, even with a body like mine. And I trust that if and when the time comes that my body cannot stand at all my spirit will still dance. I’m told I was standing there doing the soft shoe shuffle for more than ten minutes. Sadly Heather was leaving before the last day, and so that was my one and only dancing lesson, but not my only trusting lesson, of New Wine.

My reflections for my sceptical self (who has admittedly shrunk) include these: what on earth possesses someone to think of dancing with a stranger she’s only seen from behind in a tilt-in-space wheelchair (i.e. which shows his muscles are feeble)? What gives her the courage to go and ask him? And to risk being rebuffed? Now the obvious thing would be to pray for healing. But where did this very specific insight come from? I wasn’t sitting there at that moment wishing I was dancing. No one else was jigging about. It wasn’t a case of mind-reading - from behind! It was almost as if someone knew better than myself what I most needed. After all, physical healing, great though it would be, would at best be temporary - and, I hasten to say, I’m up for a cure whether through scientists or intercessors anytime - but to dance in worship would last somewhat longer. So, sceptical me, what’s the answer? (Sotto voce) I guess it must be God - and a woman who trusted. And what confirms that answer is the change from the shadow of hopelessness to hope, which you may recall is one of the three great gifts of the Holy Spirit which Paul writes about, “Now faith, hope and love abide, and the greatest of these is love.” Hope says, You have a future, and it’s a good one.

However, as Alan Scott enjoyed saying, “And if that was all, it would have been good....” But it wasn’t. I lost count of the signs of God’s concern after that, like the chiropractor who prayed with us in the car park. Two final incidents are enough. On the last morning our great friends, Anne and David, were up as day visitors. They’ve been friends many years and been great encouragers to say the least. Before we came home in the mid-afternoon, we were in the worship venue and I wanted to stand to sing, with Jane on my left. Suddenly David came on my right and supported me. I could think of few better scenarios, in worship between good friend and best of wives!

The man in the wheelchair wearing a green top

The last scene to report happened a few hours earlier. We were on the way out of Venue 2 when one steward asked us if we wanted prayer. Jane said no; I said yes, as there’d been mention of backs needing realignment. As people know I’ve developed a right-hand list, caused by weak muscles. I’d noticed it when I “danced” the day before. So, duly closing my eyes, I was prayed for by a couple of helpers and felt heat down my back. I’m not making a claim about the result, but what happened when I opened my eyes was this. I was faced by serried ranks of children. They were a group from the Rock Solid children’s club, who’d been looking for a man in a wheelchair wearing a green top to pray for. Why? Because in their group they’d been looking for “treasure”, i.e. asking God what he wanted them to go out and do. And that was what they “heard” him saying. And there they’d found their treasure. Would I mind them praying for me? Of course not. So Jane explained what was wrong, and some of them prayed for me. Again the sceptical could find ways to explain away the specifics of the “word” they had. I was simply moved, and stood in appreciation.

I have to say that, even in the euphoria of Great Britain’s medal success in the Olympics, I find the impact of the kingdom of God (as theologians call it), as I experienced it last week, as even better. What the week was trying to say and model was that God whose creation is the universe wants to communicate with and cares for every individual, whoever they are and whatever their needs. That’s exceedingly exciting. Furthermore it showed that human distinctions, such as gender and colour, class and education, are irrelevant in the "kingdom". What matters is the One who is at the centre. It's a very liberated and liberating world, which is worth finding. And I have to say that it's clear to me that an outbreak, or perhaps I mean "inbreak", of that kingdom would, and I trust will, be even better than a permanent Olympic summer.