Losing your voice

Referendum campaigners suddenly woke up to the fact that many, particular young, people are feeling unheard and disempowered. So last night as the deadline for registering to vote approached the registration website crashed and kept crashing. I heard someone relating how this supposedly two-minute process took them three minutes to complete the first page and then it crashed and continued to do the same thing. I wouldn't be surprised if they'd given up. One might argue that they shouldn't have left it to the last moment. But such is human nature - well, for a lot of us. I must admit to being someone who's worked better to deadlines. Which reminds me, I have an article I must send in this week! It is a shame, however, when people lose their voice needlessly, when what they want to say isn't heard. It's even worse when it happens by force.

In Motor Neurone Disease (or Lou Gehrig's) most people soon lose their voice - literally. Jozanne Moss, my South African co-author in I Choose Everything, described how she wanted to forestall this for her young children. When she and her husband Dave were taking a break together, she recorded DVDs for them which they could play in years to come after her death. (See below.)

This month is MND Awareness Month. One of the aspects being highlighted is its effect on speech, in a campaign called Silence Speaks. Hayley Ladbrooke's account of a week without speaking, which you can read in the link, makes the point. Her father, Robert, has the disease. “I spoke to my dad after completing Silence Speaks to find out how he finds things and he said it’s really hard work and people can turn their back on him. He used to be the life and soul of the party and now people sometimes can’t be bothered to wait for him to talk or they just can’t understand what he’s saying."

Last year I received an email from a young man named Olly Clabburn, who is looking at another aspect of the same symptom, similar to the approach that Jozanne took.

"My name is Olly and I am a PhD researcher at Edge Hill University in Lancashire. My thesis is investigating a therapeutic intervention for people with MND, and how this impacts upon children/young people who care for a family member with the disease, and also children who are bereaved due to MND.  This all stems from my Dad (also a Michael!) and Nan, both having MND when I was younger and me wanting to provide better support for children who are affected by someone in their family having the disease.

"Essentially, my research is investigating the use of a ‘digital legacy’ with people who are affected by MND. This means people with MND creating video messages and recordings of their memories specifically to be given to children in their family to watch and use whilst they provide care, and for when the young person becomes bereaved.  

"I have set up a research page (www.facebook.com/mndlegacy ) and wondered if it is something you might consider including in one of your blogs? I am now at the stage where I can begin to speak to people living with MND who have recorded or currently recording a legacy. First and foremost though, I hope to raise awareness of creating a digital legacy and being a potential project that people living with MND can do for free at home, and also, hopefully help to support some children in the future."

Olly's idea seems brilliant to me, and I hope that he gets a lot of material. My own vocal deterioration seems to have ground if not to a halt, at least to a snail's pace, and people who know me are quite tolerant of my mouth full of marbles. But then I'm one of the few lucky ones.

From I Choose Everything, Jozanne's Diary: 

We had the rest of the week to ourselves, but this was not going to be just another romantic holiday together.  We had other plans and we came prepared.  From the beginning of the illness I have wanted to make DVDs for the children.  I wanted to leave special messages for them on special birthdays.  I also wanted to tell them what I was like as a child, what they were like as babies, and how much I loved and enjoyed them.  Kids want and need to know these things; I know I did.  I loved hearing from my parents about their childhood but also what I was like as a small child.  I know I probably won't be around to see Luke and Nicole grow up, but I want to make sure that, as a mother, I will still be a part of their lives.

In the beginning I thought that I would make a DVD every now and again, but it never materialized.  I just never felt ready and always put it off for 'one day'.  Lately I have noticed that my speech is starting to change, ever so slightly, but I can feel it – as if my tongue is lazy and gets stuck when I say certain words.  I have to work a little harder when I speak.  People who don't know me wouldn't know the difference, but I know it's starting.  We have decided to make the DVDs now before it's too late.  I want to sound like the real me when I leave my special messages for them.

So on Monday morning Dave and I woke up, ready to tackle this difficult task.  While Dave set up the recording equipment, I made brief notes of more or less what I wanted to cover in my messages.  When Dave was ready it was time to begin.  He started filming…   I didn't feel comfortable at all.  In fact, I felt so self-conscious, I was giggling like a little girl.  Too much nervous energy.  I was trying too hard to sound natural, and instead came across fake.  This is not what I wanted.  Dave suggested that I just chat as though I was chatting to them.  This was a lot harder than I ever imagined it would be and I felt so frustrated.  Dave's phone rang and that broke the tension, but the phone call was to inform us that an old friend of mine's husband had committed suicide.  They have two boys younger than Luke and Nicole.  I was devastated.  No more filming that day.

Tuesday was very different.  This time it was real.  My friend's loss and pain became mine.  When Dave started filming, I started crying.  The thought of Luke and Nicole growing up without me became so real, and I now I had the opportunity to leave them with something, unlike Linda's boys who will never really understand why their father left.  What a privilege and special opportunity I have!  Thank you, Lord.  We made quite a number of DVDs in the days that followed and, although it was one of the hardest things I've ever done, it was also very fulfilling.  It felt like a journey that I took with each one of the kids.  My prayer is that it will be as special for them to watch the DVDs as it was for me to make them.

Jozanne

I was thinking of blogging about the FA's high-handed taking managerial decisions out Fabio Capello's hands, and England cricketers collapsing, and rugby-players surviving, but sometimes such momentous matters are put into perspective by something intensely personal. And so today sport, and politics, can be forgotten.

The reason is that when I opened my laptop this morning there was a message from Dave Moss, which still has the potential to make me well up. It was the news that his wife, Jozanne, had died. She is one of the most remarkable friends I've never met. I think it was Archbishop Desmond Tutu who described us as an "odd couple". He kindly provided the foreword to the book Jozanne and I wrote together, I Choose Everything, with the sub-title, "Embracing life in the face of terminal illness".

We'd been put in touch when Dr Peter Saunders met her on a trip to South Africa and she'd read my first book, My Donkeybody. A young mother of two and a primary school teacher, she'd been diagnosed with MND a few years after me and mine was the first book written from that situation by someone with a similar faith to hers. I'd been wanting to explore further the implications of terminal disease for faith in a book, and when she began to send me things she'd written for friends out of her experience they seemed to me to provide exactly the practical groundings my reflections needed - and so the book came to be written. Jozanne had a translucent sort of faith which spoke to people of all shades of viewpoint. As Jozanne's decline was quite rapid, we were delighted when the publishers, Monarch Books, planned to publish the book in summer 2010. We weren't sure how much longer she had for this world.

Clearly she was a fighter, and of course she had every reason to remain for her children, Luke (13) and Nicole (11), but now her fight is over, as the prayer beautifully puts it:
Support us, O Lord,
all the day long of this troublous life,
until the shadows lengthen and the evening comes,
the busy world is hushed,
the fever of life is over
and our work is done.
Then, Lord, in your mercy grant us a safe lodging,
a holy rest, and peace at the last;
through Christ our Lord. 
Amen.



She died peacefully with her husband, Dave, and her two children beside her at home. My overwhelming feeling is of the privilege of having "known" her and worked on our book together. They say teachers have a greater influence than they are aware of. Jozanne undoubtedly inspired, and will inspire, many more people than she ever dreamed possible. It's a curious aspect of weakness faithfully borne that it can have such an effect. She had no doubt that her ultimate home was "to be with Christ which is far better", and I have no doubt she is now discovering its truth. My only regret is that I never met this lovely woman in the flesh. However, one day, Jozanne, I trust I will meet you and enjoy your smile.


Finally, a quotation which would fit Jozanne from Charles Dickens, born 200 years ago today:
"Have a heart that never hardens, and a temper that never tires, and a touch that never hurts."

The law of the jungle

Here I am sitting in Cornerstone (my favourite coffee shop), enjoying a peaceful cup of coffee. I've just put up on its Facebook page pictures taken at Tuesday's friendly AGM. And now I've noticed on Peter Saunders' blog that the BBC is putting out another programme this coming Tuesday about patients in a permanent vegetative state, and my heart sank, especially when I read how it's billed: "There are thought to be as many as 5000 such people in the UK. The working party will look at concerns that assessment and diagnosis of patients is not consistent across the country and will ask whether the cost of long term care is affordable to the NHS. Ann Alexander examines calls for a reform of the process to end the life of such patients where their families believe their loved one would no longer wish to be alive. The programme reveals how some hospitals appear unaware of the law and hears how the process can be lengthy and costly, putting families under further strain"(Peter's italics). As Peter comments, the old specious euphemisms. (There was rather a witty Mac cartoon in The Telegraph on the subject.)


You can see the way the argument's running. This Monday it was, "Individuals should be allowed to choose when they die (only when their lives are unbearable, of course)." Next Tuesday it will be, "Oh yes, and did we forget to mention those who can't choose? Can we afford them? No. They're very expensive to keep. So let's put them down." The argument flows from choice to non-choice so easily, from patient's decision to family's wish so seductively. "Surely they have no quality of life?" You may remember this was something I touched on in Chapter 21 of I Choose Everything, "Compassion costs":


"With the discovery that we can have some form of communication with some patients in a persistent vegetative state (deep and long-lasting unconsciousness), one of the first questions journalists asked was whether that meant one could get an answer to the question, ‘Do you want to go on living?’ They expected, I think, to be told No, and that this would solve the dilemma of keeping comatose patients expensively alive, but the surprising truth they heard was that the vast majority of ‘locked-in’ patients (perhaps the nearest one can get to a conscious vegetative state) want to stay alive. Contrary to the account in the film, Jean-Dominique Bauby, who authored The Diving Bell and the Butterfly merely by a movement of an eyelid, did not ask for his life to be ended. Just down the road from where we once lived, in Stepping Hill Hospital is a 26-year old mother locked in her body, Michelle Wheatley, who steadfastly wants to live. There is, it seems, a deep-seated instinct to stay alive, and actually to keep alive. We don’t naturally stand and do nothing when someone tries to jump under a train. Something tells us that life is precious. We know it’s good to be alive, even when it’s hard. We value life, rightly."

Who's next? I wonder. The senile who can no longer express themselves at all? Can we afford their care costs? "No doubt they'd rather be dead." I'm sure the Radio 4 programme will have people claiming that ending the lives of deeply comatose patients is only compassionate. But I'm afraid it's not compassion. It's economics, and it's the law of the jungle, the survival of the fittest.  


I reflected on Monday on the irony of Choosing to Die immediately following Springwatch. The latter is presented by jolly, jocular personalities, full of the joys of spring and new life; the former by the saturnine Mr Pratchett, presiding with melancholy solemnity over death. Where's the link? I thought. Then I remembered the pictures of the young buzzards and barn owls who consumed their weaker siblings. "It's the way of things," Chris Packham explains in lugubrious tones. "They have to survive, when their normal food runs short or when the owls can't hunt because of the rain." It's the law of the jungle, but not the law of community. We don't live in the jungle - do we? Individualism brings death; community brings life. And the law of community is love.  

Compassion isn't feeling sorry for someone or yourself;
it's staying with them through their suffering to the very end.

Jozanne's book launch

"In the 4th century Saint John Chrysostom refers to a 'double famine' which impoverishes two groups: the poor who lack provision and the Christians who, in their luxury, lack the mercy of God. 
"Seventeen centuries on..." (Marijke Hoek). 


They knew a thing or two, the old saints. Plus ça change....


Yesterday Jane and I watched a dvd of the launch of I Choose Everything in South Africa, back in the summer. Dave Moss had sent it in the New Year. Inevitably I cried watching Jozanne and her lovely family. She was thin but her smile was luminous. Unfortunately I don't know how to extract stills from it; so I've taken the YouTube picture - not of the event sadly, but of Jozanne when she could still mutter words. Nicole played the piano, Luke the guitar (classical) and Dave gave a moving speech quoting Archbishop Desmond Tutu's foreword. "Jozanne’s Diary in particular lets us see, in painful intimacy, the grievous prospect of losing everything and everyone she holds dear. And yet, everything isn’t lost. That’s the wonderful certainty that God gives his children. We’re all part of his plan. We are all part of his family. Ephesians says, ‘God chose us in Christ to be God’s children before the foundation of the world.’ We didn’t have to do anything. It was given freely and our worth is infinite. We aren’t an after-thought. Isn’t that beautiful?? We aren’t an accident. Some of us might look like accidents. But no, no one is an accident. Isn’t it incredible?"


People sometimes ask me how Jozanne is now. The last time I heard she had lost all independence, was being fed through a PEG line (direct to the stomach) and was having breathing and pain relief. But was still drawing encouragement from the positive reception of her writing and joy from her family. And she's still able to smile. 

A great day

Today we had a brilliant afternoon out. We were due to be meeting our friend, Elizabeth Berner, to whose husband, Tim, I dedicated I Choose Everything. He had MND for 20 years. He inspired me with the conviction that terminal illness is not a curse but even a blessing - a severe one admittedly. But we're certainly not victims. That has really helped me. Anyway, we'd arranged to meet at The High Table on the High Street in Oxford. http://www.thehightableoxford.co.uk/
So Jane and I drove in and, miraculously, found the last disabled parking space in the centre. Someone was just driving out of it. It was a clear crisp day, with bright blue skies shining on the mellow gold Oxford stone of the colleges. Getting in to the restaurant was a bit of comical struggle. Jane and a waitress heaved the wheelchair, and then a passing young man offered to help - and in I went. Soon Elizabeth walked in and we ordered our meal.

The food was excellent; the service was delightful; but what made the meal was just being with someone who exactly knew what we're going through, as she and Tim had been there before. So I could pass on some of my salad to Jane and Elizabeth. She was tuned in to me and understood what I was getting at. We talked about families, teaching, Shakespeare, faith, her time at Oxford, as well as incidentally illness. And it was just a really lovely time.

Life isn't bad, is it?

Life and love

A friend of ours, having read the blog, said to me today, "You seem to be enjoying life." And it's true. And I'm grateful. It's frustrating not being able to do just what I want when I want. But life isn't dull. For example, last Monday (Bank Holiday) we had a church barbecue at the local primary school and, although I couldn't join in, I could be proud of Jane astounding others with her prowess with the rounders (baseball) bat.

On Wednesday it was a rather late visit to Cornerstone. As we waited to order our cappuchino, a voice spoke over my shoulder, "Hello, Michael! Remember me?" It was none other than Lynn whom we'd met for the first time at New Wine with James, her husband, and Beth, her disabled daughter, who'd taught me a lesson about God's love. There is something about friendships within 'the household of faith', and especially, I suppose, with those also facing adversity. Having begun with meeting them, it seemed to round off the holiday period beautifully.

While we were there we picked up a copy of the Oxford Diocesan newspaper, The Door, in which next to a report to the launch of I Choose Everything, there was a review of the Creation Theatre's production of Romeo and Juliet (http://www.oxford.anglican.org/the-door/features/a-dazzling-tragedy.html). The weather being set fair and warm, "Why don't we go and see it?" I said to Jane. There was room on Thursday evening; so we booked tickets. And weren't disappointed. First job on Thursday, however, was to begin the hunt for a replacement Motability car. Being a francophile, I rather fancied a Citroën and so we went to the dealer in Abingdon. The thing about choosing a car is that there a lot of small factors which it's crucial to get as right as possible, eg room for the wheelchair flat in the boot, a low lip to the boot, a grab-rail above the passenger door, a headrest you can lean on, leg room, arm rests on both sides. Sadly both the C4 and C3 Picassos failed, and anyway we didn't like the ambience of the place. On the way home we pulled in at Grove's local Vauxhall dealer which was an entirely better experience. Surprisingly the new Meriva met nearly all the criteria and looks quite good. There was one drawback, which was the lack of grab-handle on the passenger door - which our C-Max has. Instead, like most new cars, it simply has a slot in the arm rest in the door - which is ok while my fingers retain their strength, but who knows how long that will be...? Perhaps we'll look at a replacement C-Max, and compare and contrast.

Meriva front seats

It wasn't long before we were back on the road to Oxford, heading for the Saïd Business School, where there's an amphitheatre on the roof. There was a huge group of language students learning the English art of queuing, but we picked up our tickets and went to the courtyard - where, as often we found people incredibly helpful, making sure we had good views and reached where we needed to be when the play moved on the roof! Indeed the front-of-house manager, who we discovered hailed from near where I taught in Cowley, went beyond the call of duty in making us comfortable with blankets and cushions as darkness fell and the temperature dropped.

The production was remarkable: very intelligent interpretation, well communicated Shakespearean verse, lively, emotional - a tour de force by the cast of nine actors. It was an excellent evening for it, so that the love scene where the newly married Romeo and Juliet part took place in the half light and by the time Romeo received the news of her supposed death the stars were visible overhead ("Is it even so? Then I defy you stars!") I'd recommend you go and see it, only tonight is the last night. Hard luck!

Then yesterday it was another meeting of the local MND Association branch. I have to say that aromatherapy didn't set me alight, but, as Jane observed, she didn't think it would. Well, I think a bit too much store can be set on it. But as always the main thing was meeting people and getting to know them better. There's a camaraderie in welcoming new people. Friendship matters. A large shared concern we all have is connected with the benefits we receive at the moment. With government cutbacks affecting local authorities, one member is already facing having her care-package removed. It seems madness that someone living on her own and suffering from a degenerative disease should suddenly face having to fight for funding for her care. She needs a lot of help. With Primary Care Trusts being abolished and funding being devolved (and presumably reduced) to GPs we suddenly find ourselves in utterly uncharted waters - and most MND patients don't have the luxury of time on their side. On average it's 17 months from diagnosis to death. By the way, it all makes a national MND strategy the more urgent.

Bits of good news

I'm grateful to Bryan for pointing this story out to me. A bit of good news to take you in to August. This is defying the politics of fear!  http://www.bbc.co.uk/news/world-us-canada-10822923. Well done, that girl! 
I'm hoping for some more good news with the Hungarian Grand Prix. Come on, Williams! I've just watched the interview with Frank Williams on BBC. I hadn't realised he was disabled after a car accident. And come on, Jessica Ennis, in Barcelona. She, of course, had to change her long-jump take-off foot after fracturing her right ankle two years ago. Two determined people who didn't give up when disaster struck.

Tomorrow we're celebrating again - this time my best man coming of age (as we bus-pass holders say). The beginning of another bacchanalian August!

And then it's off to enjoy some New Wine. Hopefully there'll be some sales of I Choose Everything there. It's selling quite well so far, I'm told. I think that's largely thanks to the South African connection. More good news. 

BBC Bias

Oh, flippin' 'Enry, BBC! What is all this? Sorry about the strong language, but what do you think you're up to? Yesterday on TV's 6 o'clock news, Radio 4's World Tonight and on the World Service in the night you headlined Tony Nicklinson's demand for the DPP to allow his wife to kill him (http://www.bbc.co.uk/news/health-10689294). As I understand it he had a massive stroke which has left him paralysed, able to communicate only with his eye and head movement. He is 'fed up' with his locked-in state. Big international story? And by the way was a prolonged commentary by Debbie Purdy on the World Service your much vaunted balanced treatment? I suspect it's launched by the pro-euthanasia lobby to coincide with the 'silly season' of little real news when broadcasters want to fill the airtime with whatever comes to hand.

But the point is, we heard all about him, but what about the case of John Millar? 'Who?' you ask. Well, that's it. He's the Edinburgh pensioner who last year tried to smother his wife, Phyllis, who has Multiple Sclerosis, with a pillow. She explicitly told him she didn't want to die. He was her sole carer. He told the police, "She would be dead and out of the way." He was sentenced last week. That story was conspicuous by its absence from the headlines. It does appear on the BBC website, in fact - on Scotland News, Edinburgh East and Fife (http://www.bbc.co.uk/news/10631843). In other words tucked away in a local news page. But it's a paradigm case of why changing the law mustn't happen, because had he succeeded the only witness to her murder would have been dead and his defence would have been compassion and her request. She's now being cared for in a nursing home, but what a traumatic experience... So where's the BBC's level playing field?

How did I come to hear the story? It was actually through the Canadian blogger I follow. How ironic is that! One more thought on the sad story of Tony Nicklinson. I wonder if when he had his stroke his doctors intervened to resuscitate him and whether his family desperately hoped and asked them to save him. I would imagine they did. It would have been only natural. But rather than killing him now, perhaps it would have been better to 'let nature take its course' then. That's of course an infinitely difficult decision, and requires extraordinary wisdom. But perhaps society as a whole should have the courage to say to families, "If we make this person survive, do you realise what that might mean - indefinite years of dependence on their part and care on your part. It will an irrevocable commitment."

The news-story about Ali Mohmet al-Magrahi also gave me pause for thought. You remember he's the Libyan Lockerbie bomber who was released a year ago by the Scottish government on compassionate grounds because he had 'terminal' prostate cancer, with an estimated 3 months to live. Well, he's still going strong and the cancer specialist, Professor Karol Sikora, of CancerPartners UK, who diagnosed him, was quoted in the Sunday Times last week as saying, "There was always a chance that he could live for 10 years, 20 years ... but it's very unusual.... There was a 50 per cent chance he would die in three months, but there was also a 50 per cent chance he would live longer." Much of the euthanasia campaign is dressed up as a way out for those with 'terminal' illnesses. What exactly does that mean? As I've said elsewhere, we are all in a terminal condition. But if one of our leading cancer professors can give a 3-month prognosis and then admit he was only 50% sure, it seems we are on very slippery ground in categorising terminal conditions. After all Debbie Purdy herself is having an eventful life, and so am I, to say nothing of Stephen Hawking, and we all technically have a terminal illness. I have many friends who have had cancer and are living full lives. What I fear is that doctors could be induced to make a terminal diagnosis and it be a ground for assisting suicide or euthanasia. Life, even one like mine, is infinitely rich and precious.

I was glad to find out that I Choose Everything is being enjoyed by all sorts and conditions. Sales are going well. But here's an example of it being inwardly digested for real. To be fair, it wasn't Jess who was chewing on the good things in it. We just got her to pose! Seriously, if you want to think about the looming issues around euthansia, it wouldn't be a bad place to start.

Book launch at Cornerstone

Quite a weekend! On Friday we established a skype link with South Africa and 'met' Jozanne and her family for the first time. Wow! That was a moment. Jozanne still has her lovely smile. The link didn't work quite so well when we tried it at Cornerstone on Saturday at the book launch, as we could hear them but not vice versa. However that didn't spoil their enjoyment or the excitement of having their virtual company for the afternoon. 

Mary, the manager at Cornerstone, did an amazing job decorating the whole place with bunting. Katrina and the caterers produced cakes - all with an orange theme. I missed the carrot cake, but enjoyed a cup-cake with an orange jelly baby on top at the end - which was yummy. It was a real party. Thanks to everyone who made it happen.

And also thank you to everyone who came. People came from near and far for it. Sheffield, Nottingham, Rugby, Sidmouth, Bristol and London - as well of course friends from Stanford, Grove, Wantage and Didcot.  

Here is Lesley Ogden, the ubiquitous and tireless branch secretary of our local MNDA branch, who brought a display; and on the right is my promotions' manager, Bryan, who, for example, is responsible for the I Choose Everything Facebook site. 

Here I am talking to Joanne Warren, who is going to do the Great North Run in aid of the MNDA, in memory of her father, John, our friend who died last November. In the background is the lovely Mary, who manages Cornerstone.

Even some readers of this blog were there, and it was so nice to meet them. Afterwards, the family of Tim Berner came and chilled out with us at home. Tim is a dedicatee of the book. His life-asserting attitude to MND inspired and encouraged me. As you'll have gathered, I don't believe terminal illness is an unmitigated tragedy, and that thinking of sufferers as 'victims' is profoundly unhelpful. And that's true whether or not you believe that death is the final full stop. Sadly I never met Tim, but his family tell me we would have got on well together.

Fortunately there was a lot of sport on TV the rest of the weekend, as that seemed to be all I was good for! The play-off game for 3rd place in the World Cup, between Germany and Uruguay, turned out to be one of the best matches of the tournament - and then on Sunday after church we had it wall-to-wall: British Grand Prix from Silverstone, with poetic justice among the Red Bulls, and Grove's own Williams F1 got their best result so far with Barichello in 5th and Hulkenberg 10th. Yes. And then there was the Tour de France climbing the Alps. A friend of mine is concerned that Alberto Contador might win. What with Rafael Nadal winning Wimbledon and later that night Spain winning the World Cup, after a bruising encounter with the Dutch, he reckons the Spanish would be insufferable! A good thing Alonso doesn't look set to win F1! Between the Tour and the World Cup, I could nod off to the quiet swish/click of the Scottish Open Golf. Last time I looked one of the Molinari brothers was romping away with it.

But that wasn't all this weekend...

Big week

Hello, I'm just multi-tasking and listening to 'Top Gear' - and the three members of the TG mutual admiration society are laying into Wayne Rooney again. Cheap laughs, boys. Your script-writers can do better. It's easy to make negative jokes.

So we've entered the week of the launch of I Choose Everything. A number of friends from round the country have said they'll be coming. Cornerstone, my favourite café in Grove, is the venue. I hope that by now Jozanne will have received her copy. It seems to have been taking ages to reach her.

In case you've forgotten and would like to come, it's Saturday from 2 to 4 o'clock - OX12 0PT, if you're using a satnav...

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!

Mundane life

So, it was back to more normal life for the rest of the week. The heavens chose to open when I had to visit my nice 'special needs' dentist on Wednesday afternoon. Sadly he found a loose filling which had to be replaced in case it came out and got inhaled, when I was asleep for example; happily it was where a nerve had been removed a long time ago, and so he could do it without an injection. Which he did very efficiently. We haven't mastered getting on and off the chair yet. It's a bit of a cumbersome dance with me between the dental nurse, Alison, the dentist, John, and Jane. The scariest moment is when I'm perched on the very edge of the slippery surface unable to bend my legs under me! One forgets how infrequently health professionals come across MND patients. I heard an estimate recently that a GP might have only one in their entire career. Anyway I safely landed in the wheelchair, and this time it was sunny getting into the car.

In the evening it was trip down memory lane for me as we'd been invited by our friends, the Masseys, to their new house to meet Melekson and Hildah who run the New Life Trust in Lamu, Kenya, looking after street children often affected by HIV/Aids. Over 40 years ago (!!) I spent a year teaching in Kenya, in one of those rather arrogant GAP years, as I now feel, from which I'm sure I gained much more than the students to whom I taught East African history, British constitution, as well as English literature. 

That was on the side of Mount Kenya, not on the coast like Lamu; but it was good having a reminder of that year, as well hearing about Melekson and Hildah's work.  

Thursday was another MNDA Branch meeting this time with the S Bucks branch. It was a warm spring-like day; so we took a picnic and found a corner in Moreton village with a red kite circling and a couple of house martins. Then it was on to Thame for the meeting, which was about legal matters such as lasting powers of attorney and wills. It was given by a solicitor who specialises in situations like mine, and I must say she knew her stuff and inspired confidence sufficiently for me to consider consulting her. Here's fellow MND member, David, who was one of a handful of friends we knew there. He's working to complete his MA.

Finally on Friday I followed  up an email from Simon Cox, marketing supremo at Monarch the publishers, about the book launch. As you may well have discovered from the Facebook page, we've now fixed the date to be nearer publication day. So it's Saturday 10th July from 2 pm. It's at Cornerstone Café, in Grove (http://www.cornerstonegrove.org.uk/). And you, dear readers, are very welcome to join us.

More meanderings

Talking of books, this week I completed checking the proofs of I Choose Everything, and on Wednesday, after Jane had helped at Riding for the Disabled, we decided to deliver them in person to Lion Hudson rather than send them by Royal Mail. There's just something about knowing they're there. So round to the Jordan Hill Business Estate and Jane popped out and handed the envelope over.

Then it was time to celebrate. This time it was Aston Pottery, where we'd been in February, near Witney, in the heart of Cameron country. Not that there were many posters up - just one big six-footer. I couldn't help reflecting on the irony of the most English of the candidates for the top job having a typical Scottish name, while the most Scottish has a typical English name. Such profound thoughts show how demob happy I was. The sun was shining and the air was heady with the scent of the tubs full of blue hyacinths along the path from the car park. We headed straight for the tea-room for some lunch and unsuspectingly decided on filled baps - I think mine were prawn marie with salad in sun-dried tomato baps. When they arrived they were HUMUNGOUS. We could have had half each! But very nice they were too. Taking it slowly I completely finished it, not a crumb left. And then we had coffee. Excellent! You can see the view from our table, above. The chap facing is Stephen Baughan, who founded the business with his wife, Jane, in 1990. He's a potter and she's an artist. And they're very friendly.

It's grown from its small beginning into a sizable business - they employ 25+ people now. They're just launching a new size (1 pint jug) and had a wonderful display on the way to the tea-rooms, called the Auricula Theatre. Auriculas are exotic relatives of the primrose. We were given one when we moved here. All the jugs and plates are decorated with different coloured auriculas. But no item is exactly the same as another, as they're all hand-painted. This picture will give you an idea of the beautiful displays in the shop part of the Pottery. Very tempting. We wandered around, and were tempted - a little. A bonus was meeting old (not old old) friends there, and catching up with each other's news.

And so we came home. I did watch the last PMs' debate last night. I'm afraid I was frustrated by the lack of engagement with the serious issues and specific policies. It seemed to me that at least two of the gentlemen were more concerned about projecting image, and that, frankly, doesn't interest me. I admit the debates have apparently aroused people's interest in the election, but I think the cost will be too high if we decide our Prime Minister on how telegenic he or she is. By the way, I've still not had a reply to my letter from Mr Vaizey... How odd!

And á propos of nothing in particular, by way of light relief, here's that donkey story from Brian I promised you. 
Father O'Malley rose from his bed one morning. It was a fine spring day in his new Ballina parish.

He walked to the window of his bedroom to get a deep breath of the beautiful day outside.  He then noticed there was a Donkey lying dead in the middle of his front lawn.

Not knowing who else to call, he promptly called the local police station. 

The conversation went like this:

''Good morning. This is Sergeant Jones. How might I help you?"

"And the best of the day ter yer good self. This is Father O'Malley at St. Francis Xavier Catholic Church. There's a Donkey lying dead right in der middle of me front lawn "

Sergeant Jones, considering himself to be quite a wit, replied with a smirk, "Well now Father, it was always my impression that you people took care of the last rites!"

There was dead silence on the line for a long moment and then Father O'Malley replied:

"Ah, to be sure, that is true; but we are also obliged to notify the next of kin."

May day (almost) meanderings

Tomorrow, I see, from the calendar is May Day, and so, to celebrate, here's a picture of the blossom on one of the apple trees we planted last year. It's sad that we shan't be able to let all the blossom turn into fruit. In the long term it will do better if we remove almost all of it this year. Maybe there's a moral there about pain and gain, or the Father pruning the vines....

I've recently finished reading Living with Dying by Grace Sheppard. This is a book written from the other side of the fence from mine, as it were. Grace is the wife of the late Bishop of Liverpool and English cricket captain, David Sheppard, who died of cancer in March 2005. Grace cared for him until his death at home on 5th March. The book is an autumnal love story - not only about the last few years when he was fighting cancer, but looking back over the life they shared together, much of it in the spotlight of being public figures. Grace is very honest and very personal about caring for a dying person and grieving for him after his death. It's a tender account, shot through with beautiful threads. Every bereavement is different, of course, but I think reading this would help anyone facing the prospect of caring for a loved one. It ends with a long letter to couple preparing for their last years, which is a distillation of the wisdom gained from Grace and David's experience. As you'll gather, I think it's a lovely book, personal but not sentimental, faith-filled but not pious, life-affirming but not unrealistic - and I don't think it's because I'm biased (because Grace is my cousin!).

The book's published by Darton, Longman and Todd (DLT) - and coincidentally, I assure you, has a foreword by Archbishop Desmond Tutu, like I Choose Everything. We got our copy, of course, from Cornerstone, but you can also get it via the internet.

Out and about in Grove (part 2)

By popular demand...!

I apologise to those who have been impatiently waiting for the next episode - but there's something about deferred gratification sharpening the appetite. And to be honest, you need it, because on the whole Grove is quite bland - rather like custard. However my excuse is a good one, as yesterday I finished the painstaking task of checking the proofs, which was concentrated hard work. Last night we packed them up and they're ready for dispatch to Monarch this morning. It's a great feeling. Nothing more I can do!

Over the weekend we had a good friend from our days of camping with Pathfinders in Windermere in the 90s (I almost said in the last century - which is true, but makes it sound so long ago, doesn't it?). Lisa does signing for the deaf, and blind, and leads worship in her church. So when she came to VEC with us she automatically signed in the songs - which I love, it's so expressive. However she was here for a chill-out weekend, and so I went out on my own on a politician hunt on Saturday morning and caught one in the Millbrook shops.

To be honest, I'd had wind of him from the internet, but I wanted to do my bit of lobbying. I'd emailed four local PPCs earlier asking them to support the National Strategy for MND and to ask them how they'd vote on assisted suicide if it came to it. Only one, Adam Twine of the Greens, replied personally and promptly and, lo and behold, there's his name on the MND website. Good on him! Although two of the others subsequently expressed their support for better MND care, they've not bothered to sign up - which is a shame, as it lacks that same commitment. The fourth - HE KNOWS WHO HE IS - hasn't bothered to reply at all, even though I emailed two addresses. I'll leave you to speculate whether it's a case of complacency or of a lost cause. I'm afraid he's forfeited my vote, if he ever had it. Sadly but perhaps not surprisingly all three respondents sat on the fence with regard to assisted suicide. One would hope they had backbone enough to vote for protecting the vulnerable if push came to shove.

PPC Steven Mitchell talking to BBC reporter. My pal, Peter Gill, who's his agent, on the right.

Yesterday Benvolio landed in our garden and has been making his presence known. I assume he's the offspring of Benedict and Beatrice, our local blackbirds. He's really far too big to need feeding now, but dad seems to have a soft heart. There was a hullabaloo at 2.30 this morning. My guess is it was parents mobbing a cat out to get Benvolio. If so, they were obviously successful, as he's back large as life (perhaps his name is Adrian...).

Brian's kindly sent me another donkey / parish priest story. But that will have to wait.

(By the way, have you signed the MNDA National Strategy petition yet. At the conference we were told  the total was 8,000 - which to my way of thinking is not great. Surely there are more than that who'd like to see good care provided nationally for sufferers with MND?)

Out and about in Grove (part 1)

Not only has the sun brought the blossom out apace, it's also drawn me out of my lair. On Friday, St George's Day, we went for a coffee at Cornerstone. I thought you might like to see what this place is like which I like so much and where we're going to launch I Choose Everything in June. It's really an example of not judging by outward appearance, because, to be honest, it's not that prepossessing, not ye olde quaint tea shoppe. It's on the end of a parade of shops. But its heart is on the inside. 

Good disabled access takes me tantalisingly to the counter where the cakes are just at my eye-height. Anita, one of the geniuses behind the food, always seems to be cheerful, but it's clearly not because she's been scoffing it all.

 Here are the cakes that tempt me horribly, and then there's the lunch menu.Toys for the kids. Behind me there's the book and card bit. 

Happy days

As my son would say, happy days! Sunshine and warmth in the conservatory... this is the view from my riser recliner where I sit and check over my proofs. You can see Jane's handiwork (some of it) in the garden right in front of my nose: including the seedlings waiting for the frosts to go. The best bit is the tub with tulips and pansies, which, close to, is a riot of colour. Not bad!

And of course there's Jess wondering if I'd like to come out and play - which of course I would.... But it's not a bad office, is it?

So here I sit working and reworking through the proofs. I've chosen to set this book out in a bit of a complicated format; so it's not as straightforward as My Donkeybody, but I think it will look good as well as being a good read - in my opinion! I got really good news via my good friend Louise in Sydney that Jill McCloghry is happy to be quoted in I Choose Everything. Hers is such a moving story. 

Last night we went to Cornerstone Coffee Shop for a church quiz night. Our team did quite well. Officially we won, but I'm not sure we really did. I think they were being nice to the clergy. How many King Kenneths of Scotland were there? That was a pure guess - which we got wrong. Still it was a fun evening. Life's not bad!

A day at Celtic Manor

And in case you've not heard of it, it's the very posh hotel which is hosting the Ryder Cup in June. I took my camera with me, but was so intimidated by the place I didn't dare take any pictures. (Actually I just forgot.) So these are from the website.

One has to admit it's some place. The place with two trees in it is the entrance lobby. We were there for the MND Association Spring Conference - and as this one seemed the easiest for us to get to we got up at crack of dawn and headed west along the M4 for Newport. When we drove up the mountainous approach to the hotel, it wasn't obvious where we should park, and so, being a bit late, we drove up to the front entrance, through the chaps heading off for their morning's golf. Immediately a suited gentleman emerged from the front door and asked if he could help. We explained. 'If you'd leave your car there,... it will be parked for you, madam. Can I help with sir's wheelchair?' This is the life, I thought. 

Sadly, the conference was in the corporate bowels of the hotel, which while not having the glamour of the upper floors still were no slums. Coffee and pastries on arrival, coffee and cookies at 11, lunch in the Denbeigh Suite (two courses), tea and griddle cakes at the end - and in between talks on what the MNDA offers, on its developing support systems, an update on research and finally a session on the National Strategy for MND, especially campaigning at the general election (www.mnd2010.org). We were encouraged to ask canvassers and candidates whether they'd sign 'the pledge' (to support a national strategy). By the way, did I mention the petition about it? Have you signed it?

However, the best thing was meeting people. In fact the first people we bumped into (literally) were Norman, who sometimes comments on this blog, and his brother. There were three other people we knew there. We met a number of new people as well, including a nice coordinator from the Midlands, who recognised me from My Donkeybody. The only downer was that it was a glorious sunny day, and there we were, indoors. I suppose we could have explored the grounds at the end, but we could sense Jess calling for her supper; and so we headed home.  A good day.

Actually it's been a pretty good week for us - if not for G Brown and D Cameron esquires! I think it was quite a revelation quite how well N Clegg esq performed on Thursday night. I guess three things were in his favour: one was being seen on an equal footing with the other two; secondly not being rendered inaudible as he usually is in the bearpit of Prime Minister's Questions, and thirdly having nothing to lose. But give him his due, he answered questions specifically, appeared sincere and smiled, at least looked relaxed. I guess the other two will be a bit more wary of him next time. However I did think of  Brian's joke as they promised their goodies... 'we were campaigning then...'

But I was talking about our week. I suppose, beside the sun coming out, the big thing again was I Choose Everything. On Tuesday we went in to Cornerstone and talked to the manager, Mary, about the possibility of holding the book launch there in July. She was meeting with board members that evening, and upshot is we have a provisional date booked for late in the month. In the meantime Jenny who's handling the nitty-gritty editing at Monarch, the publishers, sent an email saying she had posted the proofs to me for proof-reading. They arrived on Friday, by the same post as a letter from the Very Rev Dominic Milroy who'd read the book and sent a nice comment about it. So now the job of reading through the book as though someone else had written it has begun. I must say you feel a definite sense of progress when it's set up in the final format.

However, tomorrow's a day off, which will be welcome. We'll discover whether Williams can improve on 8th which is their best result so far, in tomorrow's Chinese Grand Prix. Sadly they're further back on the grid than before at 11th and 16th.... Still, after 3 races Barrichello has 5 points, only 34 behind the leader. Hope springs eternal.