Criminal beauty

“Oh not HIM again!’ I said to Jane. ‘Haven’t we seen more than enough of him by now? It’ll just be the same old thing - again.” I was talking about Gareth Malone and “The Choir”. Same old formula, I thought. Goes to a bunch of uninterested kids/women/workers, and magically transforms them into a choir that brings tears to everyone’s eyes. The first series was at a West London comprehensive of rough kids. Then he went to a housing estate, military wives, hospital, factory and ferry workers, a school right next to Grenfell Tower - and now he was off to Aylesbury Prison, a secure unit for the worst male young offenders. Here we go again… the same magic touch and we’ll see the teenagers transformed into a Welsh male voice choir, or more likely a swinging gospel choir.

How wrong I was! You may have seen it. We watched the two programmes on catch-up, and they were moving, largely because Gareth didn’t succeed - well, not like elsewhere. He had underestimated the scale of the mountain he and the inmates had to climb. For one thing, they weren’t petty criminals. They were there for long sentences, for crimes like armed robbery, stabbing, drug-dealing. They were violent. They formed themselves into gangs even in prison and so there were fights and injuries several times a week. Many of them were struggling with mental and personality disorders. At every point, it seemed, they and any visitors were searched for weapons. Getting a group together was impossible. The most he managed was three. “This is the hardest situation I’ve ever faced,” he said and he almost admitted defeat.

And yet, he didn’t give up. He always saw possibilities in the offenders, even though society and they themselves had written them off. Their world and their music were totally different from his. They could lose their cool at any moment and walk out. But he told them when they had “done good”; he recognised and affirmed their talents. And in the end, in an empty wing of the prison, a handful of them gave performances of work they’d written themselves to their parents, staff and visitors. It was a huge achievement for them; they realised they weren’t lost causes. Happily, although Gareth’s time there ended, the impressive female governor was going to continue a music programme building on his foundations.

However this isn’t just a story about a handful of young criminals. It’s about seeing the good in others, even when we think there isn’t any - because there IS. In everybody. We’re all made “in the image of God”, and whatever that means it must be good. Jesus called himself the Light of the World and one thing light does is reveal beauty. In those young people there was music and poetry, and a longing to be better. It’s easy to write people off. God never does. He sees beauty - and hope.

(First appeared in Grove Community News March 2020)

Fire in sacred spaces

A good friend of mine from the other side of the world pointed out that on the same day as the cathedral of Notre Dame was almost destroyed by fire in Paris (which I've visited and worshipped in twice), a fire also broke out in Jerusalem’s Al-Aqsa mosque, the third most holy site in Islam (Gulf news report) (which I visited in my teens). My learned friend asked, “Is Somebody trying to tell us something?”

Ever cautious and innately sceptical, my reply was, “I don't know about that. I appreciate the comment of theologian at St Paul's Cathedral in London, Paula Gooder: ‘”Our holy and beautiful house, where our ancestors praised you, has been burned by fire and our pleasant places have become ruins” (Isaiah 64.11). In times like this, the only possible response is lament.’ Incidentally Christopher Wren found a stone from the old St Paul’s after the great fire in 1666 and the word ‘Resurgam’ (I shall rise again) appears in his cathedral along with carvings of the phoenix. Appropriately hopeful this week.”

I believe Resurgam came from an old tombstone and, of course, the phoenix is the mythical bird which emerges from the ashes. I must say when I first saw the Notre Dame fire raging on Channel 4’s news on Monday night I was appalled and later, after a meeting, watching the spire collapse and the flames’ seemingly unquenchable thirst, I wondered whether anything could survive the inferno. Well, it has. And some very brave firemen risked their skins to save most of the precious artefacts and relics. Yesterday it transpired that the three rose windows and the great organ had survived as well as the main structure. The full extent of the damage is yet to be assessed, but I suspect that President Macron’s ambition for its restoration by 2024 may just be realised.

Two things which stuck with me from the reports was an interview with computer engineer, Jean François, an atheist (“I hate anything with religion, but I love this church”), sitting looking at the cathedral with tears on his cheeks (Channel 4 interviews), and then the picture from the west door looking past the firemen and seeing a gold cross catching the light through the huge slender gothic columns.

Well, last night, I was annoyed to hear BBC analysts trying to extract some political story from the tragedy, such as Emmanuel Macron using it to relaunch his flagging popularity. So let me not use it to be overly pious either. However I did notice the irony that the fire took place on the Monday of Holy Week and I wondered where all those who were hoping to worship in Notre Dame this week would be over Easter. For thousands it is a "place where prayer has been valid".

In the meantime, I will recall again the ancient poet’s words, “Our holy and beautiful house, where our ancestors praised you, has been burned by fire and our pleasant places have become ruins,” and, while lamenting, take comfort in the hope of resurrection, however it comes.

Talking of dying

Yesterday Jane and I went to Woodley near Reading - No, let me start one or two steps back from there. I'm a great admirer of Dr Kate Granger. She is one brave person, though she wouldn't bless me for saying so! Here's what she wrote about herself:
"I am a 31 year old Elderly Medicine Registrar working in Yorkshire in the UK. Nothing unusual about that really. But I am also a cancer patient, a terminally ill one with a very rare and aggressive form of sarcoma. On my blog I muse about current issues especially relating to end of life care, communication and patient centredness. I also write about my experiences as I approach the end of my life.

"I have written 2 books, The Other Side and The Bright Side. We sell these with all profits being donated to the Yorkshire Cancer Centre Appeal in Leeds. See my website for more details – http://www.theothersidestory.co.uk". 

I challenge you to read her latest blog post without being moved and inspired (apologies again, Kate!): Dear Cancer Part 2. Anyway it was while researching some talks that I came across her comments about the Liverpool Care Pathway, which was rubbished inter al by the Daily Mail (no surprise there!). Her comments last November in contrast to the media hysteria were unsurprisingly extremely well informed and balanced. For example, "When my time comes I really hope my care will follow the standardised LCP approach. I fully believe it improves care at the very end of life and results in more ‘good deaths’ with comfortable patients not undergoing futile painful interventions and well informed, emotionally supported relatives, making the grieving process that little bit easier." 

Sue Ryder House, Nettlebed

So that was step 1. Then Jane and I went to an MNDA tea put on by the local Sue Ryder Hospice at Nettlebed (once the home of none other than Ian Fleming) where our hostess, Lynn Brooks, mentioned a consultation afternoon being put for the Leadership Alliance for the Care of Dying People by Sue Ryder, in response to Lady Neuberger's More Care Less Pathway report which led in July to the Health Minister's scrapping the Liverpool Care Pathway and looking for an alternative approach. Was anyone interested? We were - and so we applied and got the last two places.  Step 2.

So, yesterday afternoon we drove across the Downs and along the motorway to Reading. Step 3. The Alliance was set up, I think, by a palliative care consultant in Oxford in order to produce a constructive way forward post-Neuberger, and it draws together parties from all over the health sector, from the Royal Colleges and NHS to those involved specifically in terminal care such as hospices. There were about 56 of us there on seven tables. Only a few of us were current "service users" and carers like Jane and me, though in the end all of us will be. It was an unusual experience being in a room where everyone was at ease talking about death and dying, but not a bad or morbid one - rather like the increasingly popular Death Cafés, I imagine. In fact one of the common themes that emerged from every table was the importance of communication, between the professionals and the patients (and if appropriate their families). I tend to agree with Kate Granger's ideal that a palliative care specialist should be present when someone is given a terminal diagnosis, or if not then at the next appointment. 

As a former teacher, I frankly think that the process of dying should find a place on the secondary curriculum. I'm not sure where it would fit in! Perhaps citizenship. Talking about what will happen to everyone seems a better use of time than debating the pros and cons of euthanasia, which only serves to increase fear of dying. Far better to break the taboo we nurture concerning death. Isn't time we were open about this great fact of life, rather than be scared stiff of it?

I imagine almost everyone who receives a diagnosis of a terminal or potentially terminal condition experiences some moments of fear.  I was no exception.  I was diagnosed with Motor Neurone Disease in the same year that Diane Pretty had died in the publicity of her court cases.  I was under no illusion as to what MND meant.  I knew it was life-limiting and life-ending.  In particular I had some fears about the manner of dying I could expect.  These were fuelled by the campaign surrounding such people as Ms Pretty, which portrays those with similar conditions as 'sufferers' and 'victims' and drip-feeds horror stories to the media - with the effect of exacerbating public fear.  

Don't mistake me.  MND, as a newly diagnosed friend recently observed to me, is a 'bugger', as are most neurological and terminal diseases.  I suppose, for that matter, most dying is too - which of course none of us avoid. 

In Yann Martel's remarkable novel, The Life of Pi, which I'm reading at the moment, the turning point for the 16-year old Pi Patel, alone with the terrifying Bengal tiger named in error, Richard Parker, on a lifeboat in the Pacific Ocean comes with a discovery. 
'I must say a word about fear.  It is life's only true opponent.  Only fear can defeat life.  It is a clever, treacherous adversary, how well I know.  It has no decency, respects no law or convention, shows no mercy.  It goes for your weakest spot, which it finds with unerring ease.  It begins with your mind, always….
'… Every part of you, in the manner most suited to it, falls apart.  Only your eyes work well.  They always pay proper attention to fear.
'Quickly you make rash decisions.  You dismiss your last allies: hope and trust.  There, you've defeated yourself.  Fear, which is but an impression, has triumphed over you' (chapter 56).  It's as he accepts the tiger's presence, loses his fear and starts to face it up and almost to befriend it that he discovers his ultimately successful survival strategy. 'And so it came to be: Plan Number Seven: Keep Him Alive.'

(My beef with the campaign for assisted dying/suicide is that it feeds on and fuels people's fear - our natural fear of pain, of dying, of the unknown.  We're told stories to increase our fear of the big beast, death. And that is toxic to society. We lose our trust and our hope. We run scared of dying and lose our humanity.)

The great joy for me yesterday was seeing in the flesh what the media seems to conceal rather than celebrate: the whole range of people from paramedics, nurses and doctors, to managers, befrienders and social carers whose ambition was to ensure that the journey towards death is neither solitary nor fearful. Talking can never remove the beast, but it can tame it. And that's why we should not be afraid to utter the very words, "death" and "dying". There's an excellent organisation called "Dying Matters" - no more concerned with the euthanasia debate than was yesterday's workshop, but working to break our society's unhealthy paralysing terror of death. It's neither sectarian nor political. It can be found at http://dyingmatters.org/. It seeks to promote discussion and public acceptance of dying.

This is a time of year when euphemisms such as "passing" or "becoming another star in the sky" seem particularly inappropriate. We remember those who faced the raw reality of death in war. Death is no less real in peacetime. Let's face it, not run from it. Ultimately Pi Patel survives and Richard Parker disappears, never to be seen again.


As we drove home, the wispy clouds were starting to catch pink hues from the setting sun, and it was nearly dark as we arrived home. 

Hope or nothing?

On Wednesday evening, when Sir Terry Pratchett was yet again "Facing extinction" on the BBC, I chose to read a remarkable book we'd been lent by a medical student (via her mother), called Proof of Heaven. It's written by Dr Eben Alexander, an eminent American neurosurgeon. He inexplicably contracted the vanishingly rare e coli meningitis, which rendered his neocortex effectively "dead" and sent him into deep coma from which his colleagues expected him never to emerge. Clearly he did emerge and live to tell the tale, and his story is remarkable. As a neurosurgeon he knows what he is talking about when it comes to brain function and he has seen patients in all states of consciousness. He describes himself as having been a convinced scientific sceptic about all things spiritual. However what he experienced in his coma and what he describes with as much scientific objectivity as possible completely changed his mind.

I have certainly read accounts before of near death events (NDEs), which frankly I found anecdotal and somewhat fanciful. I have heard one person talking about experiencing heaven, to whom I was inclined to give some credence in the light of the impact it made on her life, though I suppose some people might describe her as "flakey". However, I basically held the sort of view that this man of science had before his coma: "I doubted their veracity, mainly because I had not experienced them at a deep level, and because they could not be readily explained by my simplistic scientific view of the world.
"Like many other scientific skeptics, I refused to even review the data relevant to the questions concerning these phenomena. I prejudged the data, and those providing it, because my limited perspective failed to provide the foggiest notion of how such things might actually happen. Those who assert that there is no evidence for phenomena of extended consciousness in spite of overwhelming evidence to the contrary, are wilfully ignorant. They believe they know the truth without needing to look at the facts" (p.153).

Well, in his fairly unique sort of coma (with the entire neocortex not functioning) he experienced what he could only afterwards conclude was an experience of consciousness completely independent of the brain. What's more, this experience was extremely vivid and detailed, but has none of the naïveté and self-referential aspects of other NDE survivors' accounts whose comas have been less complete. He gives an astonishingly objective account of the experience, in terms which make sense to the modern mindset, for example about the huge number of dimensions and the ability to comprehend without words. It does of course present him with a problem when he tries to describe the indescribable in language! However having made it his first priority after his medically improbable recovery to note down his memories as fully as possible, he gave himself the data to provide a coherent account. He experiences three regions or states, the muddy darkness of "the Realm of the Earthworm's View", the green brilliance of "the Gateway" and the black but holy darkness of "the Core".

At one point, he concludes, "love is, without doubt, the basis of everything. Not some abstract, hard-to-fathom kind of love but the day-to-day kind that everyone knows - the kind of love we feel when we look at our spouse and our children, or even our animals. In its purest and most powerful form, this love is not jealous or selfish, but unconditional. This is the reality of realities, the incomprehensibly glorious truth of truths that lives and breathes at the core of everything that exists or that ever will exist, and no remotely accurate understanding of who and what we are can be achieved by anyone who does not know it, and embody it in all of their actions.

"Not much of a scientific insight? Well, I beg to differ. I'm back from that place, and nothing could convince me (otherwise than) that this is not only the single most important emotional truth in the universe, but also the single most important scientific truth as well....

"It is my belief that we are now facing a crucial time in our existence. We need to recover more of that larger knowledge while living here on earth, while our brains (including the left-side analytical parts) are fully functioning. Science - the science to which I've devoted so much of my life - doesn't contradict what I learned up there. But far, far too many people believe it does, because certain members of the scientific community, who are pledged to the materialist worldview, have insisted again and again that science and spirituality cannot coexist.

"They are mistaken...." (pp. 71-73).

I can't help being struck by the contrast of the different views of reality and, therefore, meaning presented by Eben Alexander and Terry Pratchett. Strangely Alexander's seems to me to invest the present with the greater significance - it is part of a greater reality. What you see is not all you get. And the certainty that "love, unconditional love, is the basis of everything" invests existence with an unparalleled luminosity.

At this point this week it is good to have a scientist's testimony that we do not all face extinction when our brains finally pack up, but that our souls, our essential selves, will survive. As St Paul said, "If in Christ we have hope for this life only, we are of all people to be pitied. But in fact...."

PS Dear BBC, How about giving some air time to Dr Alexander's hope, instead of the diet of gloom you seem so fond of? And before you dismiss the idea, do you dare read the book with an open mind, right to the end, where the final evidential proof comes? It's available on Amazon and Kindle.

PPS Eben Alexander's version of what he experienced will not please a lot of Christians or people of other faiths, as he is not propagating a party line. He is simply trying to describe his experience and understand it in his terms. I think it's worth reading because of who he is and the profound impact his experience made on him - and because it brings the possibility of hope nearer. For me, nonetheless, the final and best proof of life after death remains what we celebrate tonight and tomorrow. "But in fact Christ has been raised from the dead, the first fruits of those who have fallen asleep."

Ashburnham

As I announced on Facebook we've just spent a couple of nights at Ashburnham Place, near the site of the Battle of Hastings - well, the nearest town is Battle in East Sussex. Neither of us has been there before, so we didn't know what to expect, though we had seen the brief comments on its website:

"For nearly eight hundred years Ashburnham Place was the home of the Ashburnham family. In 1953 the last member of this family, Lady Catherine, died and the inheritance passed to a young clergyman, John Bickersteth. Seven years later he gave the house and the surrounding parkland to the Ashburnham Christian Trust. The purpose of the new Trust was to promote the study of the Bible and the training of people in the principles of the Christian faith. Much of the original house had to be pulled down and new facilities have been added. The Trust continues, under new leadership, to work towards the same goal - encouraging people to come to a personal faith in Jesus Christ and to live their lives in the service of God....

Turner's sketch from the Tate Collection

"The centre is located in 220 acres of beautiful grounds landscaped by 'Capability' Brown, with three large lakes and much interesting wildlife; the area has been designated a site of special scientific interest (SSSI) by the Nature Conservancy Council. Four campsites are used in the summer months by church, family and youth groups. The grounds are not open to the public,  but we do consider requests for visits from local interest groups. Visitors are always welcome to the Ashburnham Parish Church, which is located in the grounds."

The artist, J M W Turner, sketched and then painted a watercolour of the Vale of Ashburnham in 1816, where you can see the three-storey Italianate stuccoed mansion in the centre distance. Later it was clad with fashionable brickwork. Sadly during it was damaged following a crash of a fully laden bomber nearby which to the start of dry rot, and the eventual removal of floors. 

Turner's watercolour from the British Museum

Well, Gill said she was looking forward to my reflections - so here goes. The first thing to admit is that we were not staying in the big house, but in Carpenter's Lodge where our son and his family have just settled. He's just started as one of two new directors there. 

We travelled down on Sunday afternoon and arrived in the sun. As you turn in at the imposing gates, you drive through old deciduous woods, past a lodge and then you round a corner and catch a view of the house across the lakes, which no doubt was the first vista Capability Brown wanted to greet you. The trees have now encroached on the panorama, which is a shame, though perhaps in these motorised times we might not linger to admire the view as we should.

That evening we joined the community for their Sunday evening celebration. There is something uplifting about joining an international group united in worshipping a God whom they clearly love. The community is international because it includes a good number of young volunteers from all round the world who come to improve their English and to serve God, which they do primarily in looking after the needs of the guests who come on retreat, for conferences or simply for rest and refreshment. From my point of view the worship led by four of the volunteers was refreshing and personal including as it did one of my favourite modern worship songs, "This is my prayer in the desert". 

On Monday I was loaned the house's mobility scooter (rather nice all-singing vehicle) and we toured the house and grounds. I must say it's all remarkably wheelchair friendly. The grounds and house are more accessible than any National Trust property I've visited - which is nice since the gardens and grounds are good places to find tranquillity as well as creation's beauty, both God- and man-made. I'm told that there are disabled-friendly rooms with wet-rooms to stay in, which is unusual. I'm hoping to find out more about these facilities since it seems to me that really disabled-friendly places to stay are few and far between. 

Andy and Paul, new directors,
with the old church behind

It is a remarkable estate, quite near the coast, with 200 acres of parkland and woodland, but it's more than that. I suspect it's one of those "thin" places, sites where the division between heaven and earth seems thinner than normal. Whether that's because of the house's recent history as a praying community, or because of a tradition of faith in the Ashburnham family, or whether because in the centre of the estate, cheek by jowl with house, stands the ancient village church, I don't know. My guess would be it was the last that broke the barrier - rather as T S Eliot describes Little Gidding in The Four Quartets: the "place where prayer has been valid", "the intersection of the timeless moment". I'm not much of a one for "sensing atmosphere". But Ashburnham was for me one place where hope seemed close and the spiritual seemed to matter -

"You are not here to verify,
Instruct yourself, or inform curiosity
Or carry report. You are here to kneel
Where prayer has been valid."

I was sorry to have to leave.

(PS I apologise for the photos. I'd left the camera on the wrong setting. So my pictures were overexposed and don't give a true indication of the rich colours.)

Little things...

Before I vent my spleen on Michael Gove (if I ever get round to it) or Ed (aka Cain) Miliband, let me dwell on more cheerful things. I can't say it does much good to get too upset about politicians, as the most ambitious of them seem very similar to each other. So instead I'll post about some of the jollier aspects of my week - trivial perhaps, but actually such things are the stuff of life.

For example, Lynne gave Jane a bird-feeder earlier this year and she stuck it on the kitchen window. "That'll never work," I told her. "They'll never come that near the house, especially to the kitchen window with you and the dog in there." How wrong I was! As I sat in my chair in the conservatory, I had a grandstand view of a sparrow mother feeding her rather demanding, rather obese fledgling brood. My own Springwatch! They've grown and flown away now - but they weren't bad substitutes for chickens (to watch, not eat, I hasten to add).

Then there was planning for an MNDA Bake History coffee morning we thought we'd hold at home a week today. I have a Facebook friend in Kelso whose husband has a similar degenerative disease. Susan saw my entry about it. Clearly she can't come but she did offer to send a few "sock monkeys" for selling or raffling. I was intrigued. They arrived yesterday. I must say they are rather wonderful works of craftsmanship. The sewing is incredibly neat to the point of being invisible. They are quite appealing. Not surprisingly demand looks set to exceed supply. The best thing about them, though, is Susan's generosity in donating and sending them. Another bright thing to enjoy.

 Talking of bright things, life isn't all light. It's light and dark. Yet I was thinking as I looked out at my usual breakfast view, there's beauty in the darkness as well. Without the dark, of course, there'd be no light. But I love the mysterious shadow beneath the dark crimson leaves of the Cotinus, the "Smoke Tree". It's like a warm cave framed by the bright green leaves of the apple and hazel. Without it my view would be much duller. And of course the view is constantly changing in different seasons and conditions. 

For me it is sad that there are folk like Tony Nicklinson who has chosen not to enjoy the small joys of his dreadfully limited life but rather to campaign for euthanasia both for himself and also for others. No one would wish Locked-in syndrome on anyone, but it need not be the death sentence he takes it to be, if people like Jean-Dominique Bauby (author of The Diving Bell and the Butterfly) and Michelle Wheatley, Bram Harrison and Martin Pistorius are to be believed (Bram Harrison's story). 

June is the MND Association's Month of Optimism. That's not a month of whistling in the dark. No one's pretending ALS/MND is any fun, though some of my MND friends have, or had, great senses of humour. However it is a month where we focus on hope - the hope to be found in the developments of research, the hope we find in being cared about and the hope to be found in the small joys of life, which somehow seem to show up all the more brightly because of the mysterious darkness against which they're set.

"Untold possibilities"

Last time I wrote about Bram Harrison, the DJ with Locked-in Syndrome. A bit of the I article I omitted was this: "Harrison is cognitively sharp, funny and mischievous; a technology geek who holds faith in medical progress, stem cell advances in particular, to perhaps unlock him one day." 
Browsing the MND Association website this afternoon I came across this article: Association-funded stem cell research achieves milestone. I remember talking to Tom Isaacs, with Parkinson's, who walked 4500 miles round the British coast raising funds for research into that disease, about ten years ago. He had great faith that research would see a cure even within his lifetime. He founded The Cure Parkinson's Trust, whose watchword is "Hope". Neither he nor I could have foreseen the exponential acceleration of research into neurological conditions over that time. What particularly excites me about the research described below is that it doesn't use embryonic stem cells (i.e. obtained from fertility-treatment excess embryos) but induced pluripotent stem cells (iPS cells) obtained from adult skin cells. For me it poses less of an ethical problem. Predictably this news didn't hit the national headlines, in contrast to embryonic stem cells - which seems to with strange regularity.


However, this is a really good news story for the reasons the article explains.

A cutting-edge stem cell research programme funded by the MND Association has produced a key development that could have a powerful impact on the search for treatments for MND.

The international research team, led by world-class scientists from the University of Edinburgh, King’s College London and Columbia University (New York), has for the first time used stem cells derived from adult skin to generate living human motor neurones that display key characteristics of MND.

These diseased neurones offer huge potential. As a uniquely realistic laboratory model of the disease they could allow for rapid screening of thousands of drugs, as well as furthering understanding of underlying disease mechanisms.

What did the researchers do?

Researchers started with skin cells donated by a 56 year old man with the rare, inherited form of MND caused by mistakes in the TDP-43 gene. Although abnormalities in this gene are uncommon, the protein produced by the TDP-43 gene has been implicated as a pivotal player in the majority of cases of MND.

Scientists used a special cocktail of chemicals to ‘reprogramme’ the donated skin cells, turning them first into stem cells similar to those derived from embryos and then into motor neurones.

Compared to motor neurones generated from the skin cells of healthy individuals, the neurones with the abnormal TDP-43 demonstrated decreased survival and increased vulnerability to damage.

The TDP-43 protein also displayed a greater tendency towards clumping together, or aggregating. This is a recognised hallmark of diseased neurones in MND and for the first time provides scientists with the opportunity to see the direct effect of abnormal TDP-43 on living human cells.

“Untold possibilities”

The team’s results, published as a ‘free to access’ article in the journal PNAS, provide proof of principle that skin cells can be successfully turned into diseased motor neurones.

At the same time they represent significant progress towards the key aim of this groundbreaking £800,000 programme: to develop and characterise a robust human cell model of MND that can be made available to scientists across the world.

Dr Brian Dickie, director of research development at the MND Association, said: “This advance is a significant milestone on the road to developing a laboratory model of MND that faithfully reflects the cellular events happening in the patient. It is also a testament to the importance of international collaboration, with eminent scientists from leading institutions around the world focused on the common goal of understanding and, ultimately, defeating this devastating disease”.

Prof Siddharthan Chandran of the University of Edinburgh, who is leading the programme, said: “Using patient stem cells to model MND in a dish offers untold possibilities for how we study the cause of this terrible disease as well as accelerating drug discovery by providing a cost effective way to test many thousands of potential treatments.”

How much better is it to cherish hope than to abandon it. Wasn't it Dante's Hell that had the sign over it, "Abandon Hope, all ye who enter here"? Well, here's a reason for hope, maybe not for my generation, or just maybe so....

Vale, Maria

If you have a memory for such things, you may remember that in June last year our friends, Jean and John, put on a successful coffee morning in aid of the MNDA just down the road in Grove. It was a lovely sunny morning and a thoroughly cheerful time. I commented here, "As well as friends and neighbours, there were four of us there who had MND at various points of progression, Jean herself, David the herb farmer, Maria the shopper, and me. Three of us were out in the garden, and, yes, we did talk about our frustrations and the lessons we'd learned, but it wasn't a moany sort of conversation. It was companionable, and at times jokey."

David and Jean both died before Christmas. Last Wednesday night, Maria too died. Maria too was a delightful person - a devout Catholic with a sense of humour and hope. It's sad to realise I shan't be seeing her again, this side of the grave. The deaths of these three local friends and Jozanne thousands of miles away bring home to me the speed and harsh reality of the usual MND. I was talking about this recently with my physio and saying how I feel almost guilty to be among the "lucky" few with a very slow form. She gently pointed out the irrationality of the feeling! She also commented on the amazing qualities such as strength that the illness brings out in the family carers. That was certainly true of Eric, Maria's husband, and Camilla, her daughter. One of my other conclusions is that I would now put a "health warning" at the start of My Donkeybody, saying it's an account of PLS, a very gradual form of MND and far from typical, so that readers don't have unrealistic expectations raised for themselves or their relatives. (At the moment it's in the appendix.) So it's vale, Maria - farewell, till we meet again.

Counsel of hope

This week there have been two stories which have leaped to my attention. One, I have to confess, I first heard on the Breakfast Show on 5 Live (Well done, the BBC!). The other appeared in The Guardian and The Telegraph. What they had in common is that they are about men confounding the realists and the scaremongers.

The Bolton News

The first is the story of Gary Parkinson: Paralysed former professional footballer Gary Parkinson has been given a role scouting for his home town club — despite only being able to communicate with a system of blinks. Gary Parkinson once played for Middlesborough and was coach for Blackpool Youth Team. He had a brain-stem stroke which has left him with Locked-in Syndrome (like Tony Nicklinson whom Jane and I met in the early summer, you may remember, for BBC West's Inside Out programme). It doesn't sound as though he has the same fancy computer, but he communicates with his wife, Deborah, through blinking his eye. He once played with Tony Mowbray, Middlesborough's manager; and he's now sent the many DVDs of youngsters hoping to get a contract with the club, whom he rates by blinking: from once, no, to four times, sign him!

I was really impressed by the determination of his friends and family (and presumably himself) not to give up on him. At the end of the Bolton News article, I read:
"The 43-year-old was initially confined to his bed following a stroke in his brain stem.

But there have been improvements.

"He has been for day visits to his home, while there are hopes he will get his speech back after an operation on his vocal chords.

"Mr Mowbray, speaking in Middlesbrough’s match-day programme on Saturday, said: 'We were determined to give Gary a role, where he could feel involved. Not only that, I genuinely value his opinions about the game.'"

The second story was from Belgium and concerned Rom Houben who had been in a "coma" for 23 years. He had been a martial arts enthusiast and almost killed in a car crash in 1983. He was regularly diagnosed as being in a permanent vegetative state. "For 23 years Rom Houben was ­imprisoned in his own body. He saw his doctors and nurses as they visited him during their daily rounds; he listened to the conversations of his carers; he heard his mother deliver the news to him that his father had died. But he could do nothing. He was unable to communicate with his doctors or family. He could not move his head or weep, he could only listen" until a neurologist from the University of Liege took another look. "Using a state-of-the-art scanning system, Laureys found to his amazement that his brain was functioning almost normally." With intensive physio, he now has some movement and is able to communicate using a touch screen with one finger.

From The Guardian

"The moment it was discovered he was not in a vegetative state, said Houben, was like being born again. 'I'll never forget the day that they discovered me,' he said. 'It was my second birth'." 

One wonders if in the brave new world of euthanasia, which some organisations are pressing towards, Rom Houben would have survived to see his second birth - or whether his "quality of life" would have been written off as negligible, his care withdrawn and his death engineered. The preservation of life is a paramount principle in human and humane society. 

"Dum spiro, spero" - while I breath, I hope - the old saying goes. What a shame that so many now utter counsels of despair! "You're disabled: you'll not be much use." "You're old and going senile: you're just becoming a burden." "You have a terminal illness: you've got nothing to live for." That's all diabolical nonsense. Every life is great gift.  

Overwhelmed by hope

Yesterday I heard a remarkable story. Well, I'd heard it before, as have most of the world of course. But it's different when you meet the man himself, isn't it? When he tells his story. And when he shakes your hand and blesses you.

José Henriquez

Alfredo Cooper with José on the far right, Bishop Henry Scriven behind 

Last night, in St John the Baptist Church, Grove, one of the 33 Chilean miners who were trapped and rescued last year, José Henriquez and his wife Blanca, interpreted by Alf Cooper (evangelical chaplain to the President of Chile), told the story of the explosion, how the miners survived and how they were rescued. Here's the moment when José and Blanca were reunited: The rescue on TV. It was incredibly moving to have the two of them there, in front of us, very  much alive and saying, "Don't give up hope and don't give up praying." I particularly remember Blanca describing how she and her daughter first heard of the accident. At first, the radio gave the name of the wrong mine, and she thought, "Well, that's not where José's working." But later it was corrected and they realised it was Copiapó. Instead of staying glued to the radio, they turned it off and knelt down and prayed. And continued for the duration - as did the miners in their underground tomb, twice a day, for 69 days, all together.

José and Alf were interviewed on Radio 4's Sunday programme, which gives some idea of a little of what we heard (26 minutes, 10 seconds in):
Radio interview with José . Last night he was quite undemonstrative and struck me as someone who was very much at peace. He was utterly sure that the miners' rescue had been a miracle, as the exploratory drill which eventually found them hit a rock and was diverted into the chamber where they were.

His over-all message was that God is alive and real, that He hears and answers prayer, and that He is loving and good - which means His answers will be for our good. At the end he and Alf Cooper prayed for the whole audience. It was a privileged evening, I must say. Next week, the two of them are speakers at President Obama's presidential prayer breakfast in Washington! For all that and all the media attention, he struck me as a genuinely humble guy who simply wants to share the goodness of God

José and Alf praying for their audience