Update

This is my last comment on England's departure from the World Cup. I don't know who composed this, but I love it!

Yesterday (Tuesday) we decided to resist the enervating heat and head for the hills, and went up to the Court Hill Centre on the Ridgeway. It's the first time we've been there. It's a former youth hostel where they also do rather nice snacks. Obviously others had the same idea; we met five people we knew there. 

We'd listened first thing to No Tragedy No Triumph on Radio 4, Peter White's interview with Tony Judt, the professor of history who has MND. It was a very articulate and vivid account of the impact of the disease. Interestingly he identified the loss of mobility in his legs as being the worst thing, representing the loss of independent living. Worth catching up with.

Fairness?

Thinking about fairness we spent Saturday with our 'outlaws', Anthony and Ruth Dunnett. The pretext was our annual visit to Stratford, this year to see Antony and Cleopatra. A beautiful sunny day, and so I was grateful for the Yeti's air-conditioning. The RSC is good at providing for the disabled. Good parking round the corner and good cheap view-points for wheel-chairs, and of course well-equipped disabled toilets. I've not seen A & C before. A mixture of high politics and high passion. You could never tell when characters were telling the truth or lying 'with a view'. In fact I wondered whether they themselves knew. Did Antony believe he'd be faithful to Octavia with Cleopatra beckoning from Egypt? Did Caesar mean any of the assurances he gave Cleopatra? Did she mean any of the amorous vows she made to her successive lovers, or was she merely in love with power? It felt like walking on marbles. Anyway it was a brilliant production - minimal set, strong performances: Caesar a chilling constantly polite politician, Cleopatra a mercurial manipulator, Antony a soldier ruled by his heart - to say nothing of the minor characters, like Enobarbus and Charmian.

This is not Charmian or Enobarbus, but Ruth and Anthony, when we wandered round the refurbished (almost) Memorial Theatre in the hot sunshine, where the British and foreign public mingled contentedly. A & R work with International Health Partners UK, which takes them to some of the direst places in the world, such as Haiti after the earthquake and Kyrgyzstan. Which brings me back to fairness. Although Haiti has disappeared from our TV screens, things there are still awful, they told us. You can't get around the island except in a 4x4 because of degradation of the roads (the potholes are so deep you drive in and out of them). I think they said two-thirds of the dead bodies are still under the rubble. But it's not all bad news. For example, there's a refugee camp financed and maintained by a Hollywood star - and IHP has been supplying medical supplies.

Here they are being audited. 

It did bring home to me what a huge amount we take for granted. Much of the world has so little. Although many people in Haiti lost their legs in the earthquake, wheelchairs are no good because the roads and paths are in no condition to use. We can't do anything about earthquakes, but we can do something about their aftermath. We can care, but we don't. I don't know how much of their fortunes footballers give away to charities, but I'm certain it's not as much as they could. That's not fair. I receive amazing treatment thanks to the NHS - that's not fair either. I'm grateful for what I have, of course, but wish that as a country we whinged less and gave more. We have SO MUCH to be thankful for.

It's so UNFAIR!!

Of course, after England's forlorn exit from the World Cup yesterday, the media have been full of recriminations for our 'dismal', 'pathetic' showing: Sepp Blatter, FIFA's president, who apparently is responsible for our goal that never was; Jorgé Larrionda, the ref, and his assistant, who apparently were the only people in the entire stadium not to have seen the ball cross the line; Fabio Capello, the manager, who doesn't speak good enough English; the English FA who appointed him and extended his contract days before the World Cup - and, of course, the hapless players, worn out, unpatriotic 'overpaid performing monkeys' who just didn't 'step up to the plate' when it counted.

What a fickle bunch the press - and we the public - are! When Signor Capello was appointed, he was hailed as the great manager, who came and instilled the much-needed discipline into the England squad, and achieved a 100% record in the qualifying rounds so that we were given a seeded place in the finals. Here was a man who had moulded these individual millionaire egos into a TEAM. 'Ingerlund, Ingerlund, Ingerlu-und!' We were heading for Brazil in the Final! Then after a long premiership season here, reality hit with the first lacklustre match against the USA and then the even less lustrous one v Algeria. Doubt began to infect expectation. Were we about to suffer the same fate as France and later Italy? Surely not. It was hanging in the balance until little Jermaine Defoe popped up and headed that single crucial goal against Slovenia. Not exactly glorious, but it would do.... I suspect the euphoria should have been a warning.

'Ingerlund, Ingerlund, Ingerlu-und!' To be fair, I thought England responded well to Germany's 2-0 lead. I guess most of us were thinking, 'Here we go again...'. But to give them their due, the English team came out fighting and it should have been 2-2. However, clearly, the ref didn't see Lampard's rocket cross the line before spinning out in a split second. 'Unbelievable!' the commentators fulminate! The fans boo the officials off at half-time. It's so unfair! Sadly even our PM joins in. But if the ref didn't see it he couldn't award it. C'est la vie. Che sera sera. That's life. Life IS unfair. But that doesn't mean you give up fighting for justice. What was disappointing was to see how the stuffing seemed to have been knocked out of us. I don't give anything for this 'they had no pride in the country' nonsense. It was more like, 'Perhaps it's just not our day after all.' We tried hard and played well, but the Germans played better, to be honest. And so we're out. And all the armchair pundits and would-be managers have their scalpels out. They're gunning for Fabio - of course -. If he goes, it will be at a cost. He's no fool!

Then in the middle of Radio 5's phone-in on the subject breaks the news that another bomb-disposal soldier has been killed in Afghanistan, and suddenly the perspective changes.... Football is not more important than life and death. Actually, it's entertainment - and, what's more, it's escapist entertainment. There are people out there who are laying down their lives for what they believe in. 

I've just watched disabled artist, Katharine Araniello's latest work, Follow Me On My Journey To Die, a short film she made last year, about disabled artist, Gemma's quest for publicity and fame by seeking permission from the High Court to commit suicide and the dire effect it has on others. Should you get the opportunity, do try and see it. That is serious, though not humourless, stuff. Sorry to say so, but it's even more important than football.

Where have all the MPs gone?

Well, it was a long afternoon but hopefully it was not in vain. Four of us were repres-enting the Oxfordshire branch of the MNDA: Barbara and Jane drove here from the Witney area, and then we all travelled on together. Once again into Dean's Yard, greeted by our friends, the genial beadles at the gate, and then we crossed to the Houses of Parliament. That's when the fun began. We went through the security barriers (those black wall things) and then down into the bowels where the checks all happened, like heavy airport security, photos, bag checks, x-rays, and through to be escorted through the corridors of power.

As it happened we followed Chris Woodhead, who'd earlier delivered the petition of 18,500 signatures at No 10, and who was going to talk to the MPs later. As a result I think we got straight into the Commons Dining Room before we should have. Neither of our local MPs were coming; so Jane, from Witney, went to find her local MP's office - and proceeded to spend the next half-hour briefing David Cameron's secretary. Nice one, Jane! At 4 pm everyone else was let in! I thought the MPs' interest - or uninterest - was disappointing. Not one Oxfordshire MP. In fact I gathered about 20 had come by 5 o'clock. But we talked to a peer, and at the end to one MP, Nia Griffith, who went off to sign the EDM (Early Day Motion) supporting the National Strategy for MND.

One cameo I witnessed was an MP talking, presumably, to some of his constituents. No sooner had the official photographer snapped the moment than the MP instantly turned and left.... Hmm.

Sadly he missed the short intro given by Professor Blakemore and the moving personal account of MND given by Chris Woodhead, former Chief Inspector of Schools. That was lacking in self-pity. It seems he's had a different form (PMA?) about as long as me. His speech is still clear. He described MND in his experience as a 'merciful disease' for three reasons. First you learn contentment. Secondly you learn to make the most of the moment. And lastly it allows you to say your farewells properly. I'm told he spoke without notes, though being in a wheelchair I couldn't see.

I'd had the opportunity earlier to chat briefly to him about the time when he taught at the University's Institute of Education and I had one of their best students attached to my department in Cowley St John. Contrary to my prejudices from his HMI days I warmed to him greatly. He commented that he'd not still be alive if it weren't for the incredible support of his wife, who was there too. Naturally I empathised with that sentiment! I reflected on how quickly shared hard experiences break down barriers and bring people together. I suspect in a world without suffering there would be far more alienation.

I suppose the highlight of the proceedings was meeting individuals from all round the country either with MND or involved in the Association in some way. There's a lot of commitment and initiative taken in fighting the cause of MND sufferers, in caring for them and in funding research. Being a rare disease, there's an unusual closeness for an organisation.  

And then it was time to leave. We had a bit of trouble in getting out as wheelchairs can't go down the normal visitors' exit. Eventually a convoy of three wheelchairs plus entourages retraced the way we'd come in past the cash machines, and photo-booth, and tight dispensers, past the only café in London where you can get a cup of coffee for 90p, and out past the policeman and turnstiles on to Parliament Square. And so back to the car, along the Embankment passing cyclists intent on self-destruction and back onto the M4 - and home. To find seven small visitors sitting in the lounge...

Overnight visitors from Fitzwaryn School, Wantage

Lobbying

Tomorrow we're off to Westminster again - this time for a parliamentary reception for the MND Association. Thank you to all of you who signed the petition for a national strategy for MND. That's being handed in at No 10, at 2.30 pm, by Chris Woodhead (ex-head of Ofsted) and Jean Waters who wrote a commendation for My Donkeybody plus four others. We're just going to try and talk to MPs and their researchers, from 4 to 6. Sadly my MP, Ed Vaizey, who's a junior minister, has told me he's got a prior engagement. I suspect the other Oxfordshire MND delegates who are from the Witney area will have been told the same. Their MP is a rather senior Minister!

Creativity all over

There's a very unpromising spot in the front of our house which faces north and gets no sun. However Jane's got these magnificent foxgloves to flourish there, and they greet me every time I hobble up the ramp on her arm.                                                                
And in the back garden there's a riot of colours, including this rose which we planted last year. It's called Freedom.... With a limited canvas Jane's quite an horticultural artist, I reckon.

Meanwhile this week I have held in my hand the first prepublication copy of I Choose Everything - Embracing life in the face of terminal illness. As you might expect and detect, I'm pleased with the final result. The publishers have done a good job. Personally, I think it's better produced than My Donkeybody. (You'll have to decide for yourself on the content!) Which reminds me. I had my appointment with my consultant, Dr Donaghy, on Tuesday. He was pleased with how I'm doing. He pointed out just how slow my PLS is. Although it falls under the MND umbrella, it is unusual in progressing so slowly. Jozanne has a much more typical form, by contrast. She had her diagnosis in 2005 and has lost all independence now. however she has not lost her faith - quite the reverse in fact. Which is why her part at least of I Choose Everything is so inspiring. You can order it now on line, or better, if you can get to it, come to the UK book launch at Cornerstone Café in Grove (2 - 4 pm Saturday 10th July) and buy a signed copy there!

I realise how lucky, or blessed, I am in so many ways: in the slowness of my MND, in having Jane to care for me, a family to support us, a faith community (near and far) to pray for and sustain us. We went to see M, a friend with more advanced MND than me this week. She is on her own and depends entirely on carers - and it's just not the same. You really are vulnerable in that situation.

Yesterday we went into Oxford to see Rycotewood's end of year furniture exhibition. We particularly wanted to see the work of Pete Beckley, whom we've got to know through church. He'd told us about the designs he'd produced, but you don't get an idea into you see them in the flesh. His main pieces were an executive screen and a lounge-bar table for Douglas House (the hospice for young adults). 

Jane admires the executive screen.

The bar table which enables someone in a wheelchair to sit and chat with someone at normal level.

The detail of the table is beautiful.

The designer, Pete, explaining the finer points of the screen to an interested on-looker.

So watch out for Pete Beckley, first-class award-winning furniture maker! His trade name is Pixel Furniture (pete.beckley@sky.com). He also was showing a pair of 'Quad' chairs, combining wood and polypropylene. I don't suppose his furniture comes cheap, but then real craftsmanship is not mass-production.

I suppose the theme of this post has been the amazing gift of creativity which so enriches life. I think that it's part of being made 'in God's image'. God has given us richly all things to enjoy. Yes!

Christian compassion?

I confess: the football has been distracting me, although you might be forgiven for wondering how that can be. It seems that the majority of the teams have been frozen with fear of failure, to such an extent that I chose to watch the Vienna Midsummer Concert last night rather than the much-decried England/Algeria match. My feeling was that I was undoubtedly watching a higher level of skill than was on display in Cape Town. (I did flick over occasionally, and watched the end of the match.)

Life has been busy recently. We are seasonal creatures. We had a clerical week last week. Off to the globe-trotting Webbs on Wednesday in Abingdon for lunch, and heard about their recent trans-world travels; and then on Friday we were graced with a visit by the bishop of Yattendon and his dog, Borage. He is a particularly well behaved, if a little indulged - the dog that is. Tony is a very diligent and, I'm sure, well-loved vicar.

Talking of dogs, I was struck by what Dr Howard Martin is quoted as saying in today's Telegraph on line. He's the doctor who has been struck off the medical register for hastening the death of 18 of his patients. "A vet would put a dog down, but under the current system a doctor is not allowed to take positive action to help a patient in a humane way." It is noticeable how he chose his words. Why didn't he talk about doctors putting patients down? Even 'put down' is a euphemism for 'kill'. So let's rerun that sentence, Doctor: "A vet would kill a dog, but under the current system a doctor is not allowed to kill a patient." Thank goodness!

Doctor Martin, I suspect influenced by Dignity in Dying (the former Voluntary Euthanasia Society), does more than excuse himself on those grounds. He claims to be trying to contribute to a national debate  on end-of-life care, but that's little comfort for the family of at least one of the patients whose life he ended prematurely, Harry Gittins. His son spoke movingly of the day which began with his father getting the car out to go for a hospital appointment and ended with his death at home. The phrase that the media has seized on is 'Christian compassion' - which Doc Martin claims as his motive. I hope that in due course he reads I Choose Everything which devotes a chapter to the subject. Henri Nouwen said, "Let's not underestimate how hard it is to be compassionate. Compassion is hard because it requires the inner disposition to go with others to the place where they are weak, vulnerable, lonely, and broken. But that is not our spontaneous response to suffering. What we desire most is to do away with suffering by fleeing from it or by finding a quick cure for it." Compassion is not pity. It's not saying, "I can't bear the pain of watching this anymore." It's simply suffering with others, standing alongside them in their pain and walking the road with them. It's not 'putting someone down', like a pet. The whole case vividly illustrated the danger of the whole euthanasia campaign, which sees killing or assisting suicide as a 'quick cure' for terminal illness. It becomes just another acceptable treatment available to the medical profession.

What a week!

Quite a momentous week, one way or another. Which explains, I hope, my longer than usual silence. Zoe, our friend who has ME, was taking her quiet week away in the Mill barn on the far side of Grove - and so on Wednesday morning I took to the electric wheelchair and together with Jess we crossed the estates and Jane let me in. I spent a pleasant quiet hour chatting, looking out on the gurgling brook. It's downstream of the mill itself where Mandy and Charles have recently installed a turbine to generate electricity.

Then it was an early start on Thursday. Bryan was going to drive me to London; Jane was off to Ammerdown near Bath for a couple of nights with her good pal, Shelley. Our family had decided it was time for us to get used to respite, and so they took over my care. We were on the road by 8.30, and rolling into Dean's Yard, Westminster, by 10.30. We were on the way to the launch of the Resistance Campaign organised by Not Dead Yet, Radar, and Care Not Killing Alliance. It's basically a campaign for equal rights for the disabled and terminally ill, including legal protection for the end of life (www.theresistancecampaign.org.uk).

 The conference room was full for the afternoon session, with scores of disabled people. Baroness Jane Campbell, the remarkable disabled campaigner, introduced the whole thing, and Peter Saunders showed the beginning of CNK's DVD Disabled People Speak on 'Assisted Dying' which features six people with different conditions, including yours truly. You should be able to get hold of one from Care Not Killing, though the details seem have disappeared from the website for the moment. Sorry, my mistake: it's on the Resistance Campaign website (Home page) with a picture of the dvd and Click here for your free copy.

Professor Ilora Finlay, palliative care consultant in Cardiff, and patron of the MNDA, was there too. I was pleased to meet her, not least because she's written a commendation for I Choose Everything. She was very polite about it. She is altogether an impressive and lovely person. We left just before the group discussion session, in order to avoid the worst of the traffic. The temperature readings on the hoardings ranged between 29 and 23º. It was certainly hot. Back home, the Manchester mob had arrived.

And so began my initiation into respite care. I must say my carers did a great job, undressing, exercises and dressing in the morning, toilet duty, and even taking my chair out into the garden so I could sit out. The beautiful weather helped, of course. It was like being on holiday. And I think it was for Jane in Ammerdown too, though being me I fear I slept better than she did.

Saturday was quite a day too, as we had some party: something like 35 adults and 12 children to celebrate our daughter-in-law's birthday. Friends and family came from all over: Sunderland, Sheffield, Sussex, Manchester, London, Llandudno... The garden and house were humming with life, laughter and conversation. It was such fun. As you'll see, Jane came back shortly after the first visitors arrived. And the weather was perfect - warm but not too sunny.

Then it was Sunday. The Manchester family left, and then it was time for us to go to church - and my first preaching for more than a year. I wasn't exactly nervous, but wasn't sure whether I'd be intelligible. However with some help from powerpoint and powerful grace, it was all right. I was talking about meeting God in the desert. In other words, when bad things happen to us or we find ourselves in a bad place, that does not mean God has stopped loving us or is absent.

By the way, there's a petition on the Resistance Campaign, and a request to write to MPs asking for their support. Please look at the website and tell your friends about it. As Baroness Campbell said, for disabled people it's a matter of life and death, literally - www.theresistancecampaign.org.uk/.