Wednesday, 29 April 2009

A different day

There's a line from Chaucer's 'The Knight's Tale' (I think) which I have always liked, 'Up roos the sonne, and up roos Emelye'. This morning was one of those mornings, and 'Up rose the sun, and up rose Jane'. It felt as if spring was back - and it's been a sunlit day ever since. I know every day is sunlit technically, but today the sky was blue. And eventually Jane prised me out of bed.

She went and helped with Riding for the Disabled (RDA) in the morning while I worked slowly on my laptop, writing. Then it was off to Oxford - which is best enjoyed in the sunshine - for a picnic by Port Meadow - well in a carpark next to it to be precise, just round the corner from where Jane had once had digs with the marvellous Miss Pollak. That was when we were engaged; so you might say it's an site of special sentimental interest. Anyway that was just the hors d'oeuvre. The next course was coffee and 'cakes' at Maison Blanc on the Woodstock Road with our friends James and Jo, who are training to be vicars.... Jo had assured me that despite its connections with M. Raymonde Blanc it wouldn't break the bank. And she was right. My only disappointment was that they didn't have the réligieuses I'd remembered from when we lived up the road, but I got over it and had a mousse cassis instead, a round creation too complicated to explain but not too difficult to consume. Délicieux!

The other excitement of the day was the fish. As you know, I'm missing the chickens a bit, but Jane is right, of course; they would have ruined our small garden. However, there is a pond in it. So on our way home we stopped off at Millets Garden Centre and bought six small goldfish, some pondweed and fish-flakes (what they like for breakfast) - and before tea with Rachel's expert advice (she knows about animals) we launched them. I'm not sure they'll provide as much entertainment as the hens, and of course not the eggs. But I hope they'll enjoy our company - as long, that is, that no marauding egrets or herons terminate their existence prematurely.

Tuesday, 28 April 2009

Going on air

This afternoon I did an interview for the Torch Trust's Insight programme (4 pm Sundays on Premier Radio). I'll let my Facebook man know when it's going to be on. I'm delighted to hear that Torch are producing 'My Donkeybody' in braille, large print, audio-book and on daisy-format CDs. I trust that my story will help and even entertain other people who have something major to contend with. Meanwhile I am just beginning to get back to writing. Maybe it is spring (which seems to have had a bit of a relapse). I hope it will continue.

Monday, 27 April 2009

Solid joys

I'm grateful to Stephen, commenting on my last post, for a fascinating link about Gavin Peacock, a former Chelsea footballer. I recommend it. I guess he would disagree with Bill Shankly, the late great Liverpool manager, saying football is much more serious than life and death. Peacock reckons there's something more lasting and more satisfying than football glory, and is taking radical steps to pursue it. (

One of my minor joys here is seeing mums from this estate setting off after 3 o'clock and returning half an hour later with their children from primary school. I'm just so glad for those children that they have that routine and, I assume, security with it. I suspect there are subconscious memories buried in me of my school days which ended in the seemingly ever present welcome of my mother. I'm sure that survival is possible without, but I'm as sure that it makes for childhood happiness. I guess dads would do too, though maybe I'm just old-fashioned, but I think there must be something about the person who's carried, nursed and fed you.

By the way, rumour has it that a little egret has been spotted in Grove. (They're the white heron-like bird which I associate with the south of France and Egypt, which have been moving their habitat northwards - ? a sign of global warming.) Meanwhile a less welcome migrant has landed in Britain, I hear tonight, in the form of swine 'flu. One would hope that the message would penetrate rather thick human skulls that we CANNOT manage the world's forces (whether 'flu or finance) on our own, and that we'd spend some time reflecting on our limits and admitting, like Gavin Peacock, that we'd do better to live in reference to the divine.

Sunday, 26 April 2009

Give them their due

You may remember I wasn't best pleased when I was informed the delivery men couldn't put up the wardrobe we'd ordered from M & S, because there wasn't room, and I threatened to write to Sir Stuart Rose, the executive chairman. Well, I did do that. I wrote about the inadequacy of their delivery conditions for a disabled person. A day later we had a phone call from the delivery department wanting to arrange a new date. Could we manage 25th April? We could and we checked that they'd gathered we had altered the order. A day later we had another call from a young man in Sir Stuart's troubleshooting department. He was very sorry about the problem we'd had. In future if we had any further difficulties, would we phone him on his personal line? Another call followed from the delivery team. So yesterday we got a phone call saying the van was on its way. This time the two guys were very helpful. And Jane has at last been able to empty the next lot of packing cases. I believe the young man will be ringing us tomorrow to check that we're happy. I'm not suggesting deluging Sir Stuart with letters, but it did show, to me at least, what a difference a good manager can make.

I suppose, sadly, that's what we saw yesterday with the remarkable turn-around in Manchester United's fortunes against Spurs aided with a dubious penalty after half-time. Give Sir Alex his due - I imagine his half-time talk was a joy to hear! And then there's Guus Hiddink, Chelsea's new boss, who's turned them round since he's arrived. And though Jensen Button is clearly a talented driver, I suspect Ross Brawn is the significant factor in their F1 team.

Thinking of Chelsea I was sad to see that Frank Lampard, a footballer I much admire, has split up with his partner, Elen Rives. I saw a link on the BBC website to him ringing in to London Broadcasting Co's DJ, James O'Brien, who had described him as 'scum' for leaving Elen and their two kids. It wasn't a 'rant' as the Times on line terms it (, but it was a thoroughly articulate (and angry) denunciation of gutter journalism's treatment of people in the public gaze. It is so easy to assume the worst, and to forget that such people have the same human feelings (and failings) as the rest of us. 'If you prick us, do we not bleed?' said the offended Shylock. Lampard accused O'Brien of being an idiot for not understanding that and for imagining him immune to the pain of the separation. I think Jesus would have simply said, 'Let him who is without sin throw the first stone.'

Wednesday, 22 April 2009

Spring is sprung

Yesterday morning I dreamed I was listening to Lord Peter Mandelson; and then I woke up and discovered it was only a pigeon cooing. Conclude what you will!

However this morning I woke up at 4.30 to a full-throated dawn chorus. I have to say that there seemed as much variety here in semi-urban Grove as in rural Stanford in the Vale, blackbirds and robins of course, but a lot more beside. Then from the distance came a cuckoo calling. The first of the year. Meanwhile during the daytime birds have been busy collecting material for nesting: starlings pulling dead leaves from the sedge beside the pond, collared doves scuttling around the newly dug flower bed, sparrows, blackbirds and even goldfinches. I was thinking about the number of birds we've seen in the garden since moving - blue and long-tailed tits, greenfinches, wood pigeons, sparrow-hawk, as well the others. Quite impressive for a 40 foot square garden. I reckon it's quite a compensation for the lack of chickens.

I heard yesterday the extraordinary assertion that 50% of UK adults live with a hiatus hernia. Which is reassuring since a member of our family has had one diagnosed. Talking of health matters, it's good news that Stephen Hawkinge is on course to make a 'full' recovery having been taken into hospital with a chest infection. It's a complication that people with MND are especially aware of, because of course your breathing gets progressively weaker with the disease. So I think the Metro newspaper's cartoon with its caption, 'I wonder if they've tried switching him off and switching him on again', was in the worst taste. Clearly neither the cartoonist nor the editor had empathy with or understanding of MND. As I commented on Sunday, it's not that those with MND lack humour. But philosophically it reinforces the contemporary fallacy that humans are mere machines. Professor Hawkinge and the MND patients I met at the weekend are living disproof of that.

Tuesday, 21 April 2009

Saying sorry

As you may have seen from the comment on my last entry, Lightwriters now have a facility for an English accent (as well as texting to and from mobile phones), which is good news for us posh people! So I'm sorry to have misled you.

'Sorry' has been in the news recently. 'Say sorry,' chant the opposition to the Prime Minister, 'Just say sorry!' For things as large as the global economy collapsing like a pack of cards, and for things as obscure as an email from one of his advisers to a crony (Messrs MacBride and Draper) plotting a dirty blog campaign smearing the Tories. Apparently personal letters of regret were insufficient. It's a bit reminiscent of the playground. Pinned against the tarmac the offender is told, 'Say Sorry. Are you sorry? Say you're really truly grovellingly sorry. Say you'll never do it again. Say it louder - so we all can hear... What are you?...'. And you know what? As you watch, you begin to wonder who's really in the wrong.

Today, I'm sparing a thought for Messrs Brown and Darling. I know going in to politics was their choice. But, to be fair, theirs is one TOUGH job (or rather two tough jobs).

Sunday, 19 April 2009

Spring Conference

Today we went to the MNDA Spring Conference in Taunton. I used to avoid them, until two years ago, I think because I was frightened of being depressed by seeing others with the disease. It's odd, isn't it, how one thinks one's different, when actually all of us are as human as each other? Of course, there are different types and stages of the disease - and so there were today; but we were all in the same boat. And, strangely, it was encouraging rather than depressing, even though I was aware that some of the delegates would have died before next spring. I guess about a third of us had MND, a third were 'carers', and a third connected in other ways with the association. I have to say the MNDA does well by us in such events. It was in a Holiday Inn; the lunch and tea were good (see above). The talks were informative, but the best thing was talking to others and carers in similar situations. There were such nice people there. One staff member of the association mentioned the proposition that nice people are particularly prone to MND - a dangerous and specious idea, it seems to me. It's a post hoc, propter hoc argument, as WW lovers will understand. It's more likely, I think, that when disaster strikes in the form of the diagnosis you just become more aware of others in similar or different trouble, and more grateful for kindness received.

I actually found people inspiring as well. There wasn't a pervasive sense of self-pity. A number of people had lost the ability of speech, and communicated by writing or the famous Lightwriter which synthesises a voice (like Prof Hawkinge's) from a souped up keyboard. (By the way it's about time they came up with some familiar English accents in text-speech programs.) Some people were facing a whirlwind assault from the disease, whereas others were waging a protracted war of attrition. But everyone was intensely interested in the latest research, not so much for themselves but for those who'd be afflicted in years to come. And people hadn't lost their humour. We were discussing the new idea of personal care budgets (meant to give control to 'stakeholders' over purchasing their own 'care packages'. Anyone who's read my book (or met my fab OT and physio) will know how blissfully happy I am with those caring for me, and I personally think it's a daft idea. Anyway, Ray who was on our table and using a lightwriter made the comment, 'If Gordon Brown can't manage a budget, how do they think we'll do it?'

Then we headed home on the M5, joining all the holiday-makers travelling home after the holiday, which was fine until we got near Weston-super-Mare, when everything ground to a halt. In due course an ambulance zoomed past on the hard shoulder and a helicopter buzzed overhead. The sun was shining; people were relaxed, walking and chatting; with one or two exceptions it was England at its endearing best. An hour later, we began to move again. It wasn't long before we were home, sufficiently stimulated for me to try downloading the photos on my mobile on to my newly acquired PowerBook via Bluetooth! A first for me, the result of which you see above.

Saturday, 18 April 2009

MND musings

It's occurred to me that I don't muse much about MND in my blog and risk getting across trades' description. I wonder why. I like to think it's because I want to get the message across that MND doesn't stop you enjoying the ordinary things of life. And it's true. But it's not the whole truth. My sort (PLS) is slow developing and so in way things are easier for me than for many others. Still as I sit here looking down the close on a Saturday morning, I see my neighbours driving back and unloading their golf clubs from their car boots and think, 'It must be nice to out walking round Frilford Heath... just walking would be nice.' Life is a daily round of frustration. I lay in bed this morning reflecting on how restricted I am. Most of my day is spent in one of three chairs. But this morning I spoke to someone with a different form of the illness, which began by affecting his arms so that now within a couple of years he's within sight of losing the use of his hands entirely. And of course that affects everything, from eating, computer, cleaning, washing, EVERYTHING. If he starts a blog, as he intends, I'll give you the link.

So, I can't guarantee, but I'll be trying to focus a bit more on the MND in future. Meanwhile, you'll be pleased to know that Romeo 'Randy' Robin appears to have found a mate. Jane's observed two robins in the garden this week. Hopefully matrimony will instill more regular hours in Romeo. No late night partying. I suppose I should be grateful that Susan Boyle doesn't practise in our garden every night. Not that she doesn't have a remarkable voice ('the voice of an angel' as Nicky Campbell said). It's just a bit louder than Romeo's. I do hope that the media attention doesn't spoil that canny Scots lady.

Wednesday, 15 April 2009

Easter hiatus

Sorry, folks, about the silence, signifying not very much. There have been times when I've thought I need to write about that, like the interview Joan Bakewell did with the screen-writer, Frank Cottrell-Boyce, articulate Liverpudlian and cheerful Christian (Catholic) apologist. His darkest work, I guess, is 'God on trial', the TV drama where Jewish inmates of Auschwitz put God on trial in absentia, trying to make sense of the holocaust, in the tradition of the dark psalms of complaint. In the end, their verdict is 'Guilty', God has abandoned his people. Which you'd have thought was a blasphemous or faith-shattering conclusion. And yet, as he observed, the Jewish faith has not died out and for many the suffering deepened rather than destroyed their faith. Paradoxically, in the end, the conclusion is a profound statement of faith, affirming that God IS God and nothing lies outside his responsibility.

On a trivial level, by comparison, I was interviewed about my book and having MND by UCB Radio a few weeks ago and was asked about what I'd learned from my illness. One was the goodness in people. Another was the mystery of the love of God. If this can still be within the love of God, which I have evidence to suggest it is, then that love must be a whole lot darker and bigger that I've previously conceived. As Frank Cottrell-Boyce implied faith is open rather than the closed system of rationalism (Only believe what can proved - which of course is an unprovable principle). Someone who recently read my book wrote: 'I shall try to remember your holding on to the belief that somehow things will turn out to have a purpose, even though it is difficult to do that often - at least I find it so.' So, to be honest, do I. I suppose the astonishing truth of this time of year is that God is not in absentia. He's there in the ancient Roman equivalent of the gas chambers, and because of who he is it's universally true. And yet it's not the whole truth, because it doesn't end there.

Monday, 6 April 2009

Lay off our posties!

Keep Britain Tidy tell postmen they may get prosecuted for dropping those pink rubber bands that Royal Mail supply for bundling letters together. They should stuff them in their pockets instead. Poor post men and women! Walk at 6 miles an hour... and don't forget to put all the junk through the letter boxes... and ignore the dogs snapping at your fingers... AND we're going to tag you to make sure you don't dilly-dally on the way (I'm not joking). But what does it matter how long they take as long as they complete all they have to do? So now, not only do they have their well-heeled bosses on their backs, they also have the Keep Britain Tidy stasi snapping at their heels.

I think it's well known that I'm a fan of posties, especially since our local representatives showed kindness beyond the call of duty after my MND kicked in. In case you've not read about it in 'My Donkeybody' (Monarch, available from bookshops and on line!), they took to bringing my post in to me when I could no longer pick it up from the floor. Come to think of it, perhaps it goes back much further than that into my childhood. Older readers may recall Alison Uttley's 'Little Grey Rabbit' books, with all those animal characters. Wasn't the postman in those... wait for it... a robin! And the letters were leaves. Or was it Blackberry Farm?

Sunday, 5 April 2009

The Report

I was interested to listen to Simon Cox's report on BBC Radio 4 on Thursday night about the 'Dignitas' 'Clinic' in Zurich. Actually I listened to the podcast this morning. I thought it was a very fair piece of journalism, not so much about the rights and wrongs of assisted suicide as about the practicalities of accessing it from England and carrying it out in Switzerland. The impression I was left with was that it's not as squeaky clean and 'clinical' as we are often led to believe. Ludwig Minelli, who runs it, is not a doctor but a human rights' lawyer who believes passionately that suicide is a universal human right, and admits the logic of his position is that anyone who is of a sound mind and wants to kill themselves should be helped to do it efficiently. For one thing, he said, it would save the NHS a lot of money from botched suicides. The flaw in his argument is that no one lives to themselves. As John Donne wrote: 'No man is an island, entire unto himself...'. The idea that what seems a most personal action, ending one's life, does not affect ourselves alone is clearly nonsense. That was vividly illustrated near the start of the programme with an interview with the sisters of a woman who'd had gone to Zurich with her husband whom she'd met in a psychiatric hospital. They were still in grief and anger over their sister's assisted suicide. Another flaw is the measure of sanity. Mr Minelli would seem predisposed to think that an inclination to kill oneself is normal.... How did he describe suicide? Oh yes, a 'marvellous possibility'. It seems to be a prime instance of calling evil good, and good evil, which I recall the Hebrew prophet identified of a mark of a disintegrating society, along with those who consider themselves wise in their own eyes (Isaiah 5.20,21).

Life is good, not ending it. Even limited life. On the same day, coincidentally, Radio 5 Live ran two interviews on the subject, one in the morning with former Under 21 England prop forward, Matt Hampson, who is paralysed from the neck down after a training accident. Most impressive. Full of life. It's worth looking at his website. 'Did you ever consider ending it all?' he was asked. 'Never,' was his answer. And from what I recall, he said, 'There's more to my life than before.' Which I could understand. It's utterly counterintuitive. To all intents and purposes, life would appear to be limited and frustrating, and yet life really happens within you - for example loving and being loved. And both those are choices: do you give it? will you accept it? The other much longer one, in the evening, was between Keith Wood and Daniel James' mother. It was a sad story about a similar young rugger player who suffered a similar injury and took a different remedy to his situation. He asked his parents to take him to Zurich where Mr Minelli's staff helped him end his life. The conversation clearly and audibly moved Keith Wood. And so it should have. He was careful not to make comparisons or judgements. Which is as it should be, except... it's not a healthy state of affairs if we fail to make value judgements. I have never criticised suicides. I have buried a number. Who can know what's in their hearts? But I wish they had chosen life instead. That's the better way.

Thursday, 2 April 2009

I've had better

Now I understand it. Sisters spread happiness, while brothers breed distress, according to research by the University of Ulster. That explains it. I had three brothers and no sisters. And I suppose it's true that we didn't find talking about our feelings terribly interesting. We just beat each other up. Probably why I'm such a miserable so-and-so. The one up-side of this news is that my grandchildren are all girls, bearers of happiness. Bless you, girls.

But let me tell you about my distress today. It was going to be a big day, because our new wardrobe was due to arrive, and then we'd be able to unpack our last clothes and send the packing cases back to the removers. Jane had a big (and painful) dentist's appointment; so we'd told M & S that I'd be on my own and I was disabled. 9.30 am, and I saw a man waving a big white delivery van reversing down our cul de sac. Hurray! Delivery man 1 rang, and came in. I met him in the hall. 'Where's it for?' So I told him. Jane had cleared space for it all in the big bedroom. Down he came. 'Have you got anyone who could move the bed?' 'Er, no! Can't you do it?' I was looking at a tough bloke and there was presumably another one in the van. 'We're not allowed to touch your furniture. We're not insured.' Well, after phone calls to HQ, the long and the short of it was they got in their van and drove away. I was not a happy bunny, as they say. I'm working on a letter the beknighted Executive Chairman. It seems to me an instance of disability discrimination. So Jane came home, mouth numb, root filled, only for me to break the bad news.

On a totally different plane, I think there's better news on the G20 front. Despite the journalists' gloomy prognistications (Perhaps they all just had brothers....) and unless you're entirely cynical, they do seem to have made progress. A trillion dollars for the IMF which could help poorer nations, plus agreement on tax havens and bank regulation. I know agreement isn't the same thing as it happening, but it's a first step. I've begun to pray a bit more seriously for world leaders. I used to think it was hopeless; now I'm not so sure.

Wednesday, 1 April 2009

Not a good day

'Not a good day, Dad,' said my daughter, on Sunday evening. She was being sympathetic, I think. Because local team Williams hadn't done as well as I'd hoped in the Aussie Grand Prix, with Nico Rosberg coming only 6th (only, I say, but at least it earned some constructors' points). But there we are, it's only a game, as Jane would say - boys playing with their toys, albeit rather expensive ones. Still, I must say, the new regulations, so far, made for an exciting race. We watched the replay in very congenial surroundings with our friends, David and Margaret, over lunch. And then of course came my second disappointment with Cambridge coming second in the Boat Race. I was, I confess, shocked and ashamed by Oxford's perfidious tactics. As Cambridge, after a shaky start on the unfavourable bend, pulled ahead and were heading for clear water, Oxford's cox urged his crew to make a dash to catch up and then from behind steered his bow oars to clash with the rear oars of Cambridge, who never recovered from this physical interruption of their rhythm. In my book the vehicle behind is always to blame in a crash. I don't know what's come over the place where I trained to be a vicar. 'It's only a boat race,' said my wife as we left....