Undivided by Vicky Beeching

“Don’t give us any spoilers,” one of my friends warned me today when I told her I was intending to review Undivided by Vicky Beeching. So I shall try not to.

One of the classic errors when writing about a book is confuse its genre, for example to treat fiction as though it’s a work of history. Of course Pride and Prejudice has a historical context, but it’s not a historical chronicle. So we need to avoid judging a book by what it’s not claiming to be. Such is the mistake made by the one hostile review I’ve been sent. Vicky Beeching, both in her Preface and Final Disclaimers, makes clear what she is writing. “This is not a theology book or an academic essay; it’s a memoir.” It is a category mistake to regard it as polemic or political. It is a personal memoir. It’s a contemporary story of one very gifted and prominent young musician struggling with her sexuality in an antagonistic culture. In effect, she simply says, "This is how it was for me."

So how does Undivided do as a memoir? For me it was eye-opening and harrowing. Although I’ve met Vicky once, I had no idea of the pilgrim’s progress she had been through. Now I understand a bit more. She is extraordinarily honest about her life, her thoughts and her faith – something which lies at the heart of her being.

In her early teens, Vicky realised that she was gay. For her it immediately created a conflict because at an even younger age she had committed herself to faith in Jesus Christ, and the evangelical culture in which she was brought up considered the two incompatible. One could not be gay and a Christian. And so for the next twenty years of her life, living in the heart of that particular Christian world, she struggled to be free of her nature and was constantly in fear of her orientation being uncovered. That struggle led to despair, many tears and the point of suicide.

Having myself grown into a similar world, I recognised the situations that she describes as true to life, from youth camps, to inappropriate use of the Bible, to double standards, and courageous stands. I also recognise the honesty of internal questioning and doubting to which she admits. It’s clear that her sexuality is not a result of nurture. Her family and her heroes of faith are staunchly conventional in their teaching on the matter. Her sister is straight. She grows up wishing she was too.

The reason that Vicky’s story captured the headlines like no other is that she was arguably the most popular female song-writer and worship leader of the noughties on both sides of the Atlantic, and in the US the Christian music business is a multi-million dollar concern. Educated in theology at Wycliffe, the evangelical hall in Oxford, her musical gift gained an added theological depth, so that when she went to the States in her early twenties her talent was recognised and she was soon signed up by EMI. She was in demand in mega-churches and on radio stations across the country. Her tour schedule was gruelling, much of it in the southern Bible Belt, where there was particular antipathy to the LGBTQ+ movement. As is now well known, it was her physical health that put a stop to her stellar life as a Christian song-writer and performer, and brought her back to England for urgent treatment on the National Health Service.

Having admitted to herself that she needed to come out in order to become whole and live free from shame, Vicky then went through a rigorous study of the Bible, which remained the foundation of her faith, in order to see whether she had come to the wrong conclusion. She highlights two occasions, in Brompton Oratory and St Paul’s Cathedral, which lead her to the conclusion that she was right. “God was letting me in on a new perspective, one of radical acceptance and inclusion. ‘Do not call unclean what I have made clean’ echoed round my head and heart. The person I’d always been – a gay person – was not something to be ashamed of. God accepted me and loved me, and my orientation was part of his grand design.”

In the final section, “Into the Unknown”, Vicky writes about her interview with Patrick Strudwick which was published in The Independent newspaper in August 2014, and grabbed the headlines worldwide within 24 hours. Read it here. The fall-out from her admitting that she was gay beggared belief and, I am deeply sorry, reflected very sadly on the Christian community to which I belong and which she still calls hers. It extended far beyond disagreement into contumely, condemnation and threats. Practically her music was widely boycotted and engagements cancelled or not renewed, drying up her income stream and threatening her livelihood.

When she was a child, Vicky’s ambition was to be a missionary like her much loved grandparents. If there is any happy ending to this gritty book, it must be that she is now representing faith in unlikely places, most of all in the LGBTQ+ community, where her Christian faith in the face of all odds is recognised and given a voice.

So, who should read Undivided, and why?

First, let’s start with people like me: straight Christians, brought up to be suspicious or judgmental about homosexuality. It gave me vivid insight into really what it is to be differently orientated in a still intolerant community. The book is dedicated “to the memory of Lizzie Lowe, a fourteen-year-old British girl who tragically took her own life in 2014 because she feared telling her Christian community that she was gay”. It’s almost impossible to grasp the nature and power of that fear until you read a memoir as well-written as this.

Secondly, gay Christians should read it, especially if you’re young. You will find you’re not alone, and that it’s possible to be gay and Christian, and have as full and fulfilled a life as anyone else. In fact, it would be so for any gay person no matter of what faith.

Thirdly, everyone should read it, wherever you stand. It is an honest insight into authentic living. It is a moving account of a hard-won liberation from fear and shame. And it's a good read.

I suspect there are many young people worldwide who are in a similar situation to Vicky’s. What she has given us, by virtue of her former popularity in the Anglophone world, is a view through a magnifying glass of their experience. We may make of it what we will. We may embrace it and support their freedom. We may dismiss it and resist any change. We may simply choose to take note of it. What we may not do is ignore it. I'm reminded of Martin Luther's apologia, "Here I stand. I can do no other." Please read it from beginning to end. Thank you, Vicky Beeching.

PS I still think The Wonder of the Cross is one of the greatest worship songs ever! How truly tragic that Vicky is no longer considered as acceptable in worship.

RIP Stephen Hawking

Today we had the AGM of our local MND Association and remembered Professor Stephen Hawking, the most famous man with Motor Neurone Disease and patron of the MNDA, who died this week. He’s widely considered one of our greatest scientists, the author of A Brief History of Time and the subject of the Oscar-winning The Theory of Everything. His MND was unique – or highly untypical – in that it lasted for 55 years rather than the average 14 months from diagnosis. He had a great dry sense of humour and an inextinguishable zest for life, despite the disease leaving him without a voice and without use of his limbs as it progressed. He claimed to have become a more convinced atheist over the years. Only once did I dare to disagree with him. In an interview in 2011 an interview with him was headlined, “Stephen Hawking: ‘There is no heaven; it’s a fairy story.’”  Which gives a beautiful picture which has circulated on social media by Australian artist, Mitchell Toy, particular poignancy.

The interview provoked me to suggest an alternative rational view, which was published in The Guardian, and as I recall attracted a quantity of hostile comment on line. I would like to think that my view and the vision of Mitchell Toy is nearer what Professor Hawking will experience than the bleakness of his own expectations.

Here is my article:

Like Stephen Hawking, I have been living with Motor Neurone Disease.  Like him, I’m one of the lucky few not to have died within months of diagnosis.  I’m nine years younger than him and have had the symptoms of the disease for only ten years, compared to his 49.  However for those ten years I’ve “lived with the prospect of an early death” also.  Unlike Professor Hawking I am not a superstar scientist.  I’m simply a small-time writer, who used to be a teacher and a vicar. 

It seems to me that, while some things Stephen Hawking says in the interview as it’s reported are unarguably true, some are also admitted hypothesis, and some are merely tendentious.  One of the features of MND both for him as for me is that it affects your ability to speak and hence pares down what you say to the bare bones. (That’s not of course the case when you have time to type a script.)  Hence sometimes you are frustrated by your inability to nuance your ideas.  And so it may be that his very categorical answers are the nub of his opinion, but not the full expression.

For example, there’s something of ‘nothing-buttery’ about his comments about death: “I regard the brain as a computer which will stop working when its components fail. There is no heaven or afterlife for broken down computers; that is a fairy story for people afraid of the dark.”  It’s unarguably true that there’s no heaven for broken down computers, as I have found to my cost when I poured fruit juice over my laptop.  The brain may be nothing but a most remarkable computer, yet there’s something generically different from a computer in a brain which, when it starts to malfunction as happens in MND, can begin to love Wagner’s music and “enjoy life more”.  That, I would say, is irrational, but not uncommon.  Human beings, it would appear, are something more than machines.  Maybe science will one day describe what the difference is.

Hawking tells us that “The universe is governed by science.”  I think I understand what he means.  It is certainly discoverable by science.  Scientific theories which don’t fit with the evidence of the universe fail.  In simple terms science is governed by the universe, not the other way round.  What’s interesting is that this is in effect what Hawking says talking about the beauty of science.  It’s “beautiful when it makes simple explanations of phenomena or connections between different observations”, citing the double helix and fundamental equations in physics as examples. 

I find myself admiring and agreeing with much of what Professor Hawking says, but I find his ethical deduction and his quasi-religious observation sadly lacking.  “So here we are.  What should we do?” he’s asked.  The question sounds similar to ones posed to great religious teachers of the past.  His answer is disappointing: “We should seek the greatest value of our action.”  It’s certainly thought-provoking (What exactly does that mean for this or that action?) and it is a principle which is reinforced by the experience of life-threatening illness.  One could say, “Don’t waste your life.”  Yet as a rule for life, it lacks both the impact and the practicality of the great Judaeo-Christian answer to that question, “Love God above yourself, and love your neighbour as yourself.”  Even those who are unwilling to subscribe to the first part can understand the second part and usually admit its validity.  It might conceivably be argued for on the Darwinian grounds, that those societies which have lived by altruistic principles have survived, but that very admission raises the question of the origin of that surprising pre-scientific insight.

Finally Stephen Hawking’s headlined observation about death, that an after-life “is a fairy-story for people afraid of the dark” is both sad and misinformed. His proposition that there is no heaven reminds one of Gagarin’s alleged dismissal of God because he did not see him in space.  Openness to the theoretical possibility of there being eleven dimensions and fundamental particles “as yet undiscovered” shows an intellectual humility strangely at odds with writing off the possibility of other dimensions of existence. 

For someone “facing the prospect of an early death”, with probably an unpleasant prelude, the idea of extinction holds no more fear than sleep.  It really is insulting to accuse me of believing there might be life after death because I’m afraid of the dark.  On the contrary, sad though I shall be to leave behind those I love, I suspect the end of life, whatever happens, will be a relief.  And, like Pascal making his wager, if it is dark, I really won’t mind, because, of course, there won’t be a me to mind.

Strangely enough, my theory that there is a form of life after we die is not some sort of wishful thinking.  It’s based on evidence.  If the brain is a computer, then, when I was studying where Stephen Hawking now teaches, I came on a mass of data of which the most convincing, the neatest, explanation was that death is not the end of life.  It wasn’t the most comfortable nor most obvious of conclusions, but the forensic case was forceful and beautiful, providing “simple explanations of phenomena or connections between different observations”.  The best exposition I found was by the then Director of the Institute of Advanced Legal Studies in London, Professor Sir Norman Anderson, in The Evidence for the Resurrection (afterwards republished as part of Jesus Christ the witness of history (IVP 1985)).  My disturbing conclusion was that, if it happened once, as seemed beyond reasonable doubt, then I needed to revise my whole world view.  What you see is not all you get.

One may wish to dismiss Jesus Christ, or Julius Caesar, as fairy stories, even as bunk, but, until one has examined the evidence in Anderson’s forensic manner, that’s a premature judgement.  I suspect many do that.  As for the idea that belief in an afterlife is a consolation, it is not just about heaven.  Most faiths in fact have a notion of judgement, which is hardly comfortable for anyone, although it does focus the motivation not to waste one’s life.  Moreover in our situation Professor Hawking surely knows better than that some notion in your head, whatever that notion might be, makes the frustrations and pains of a terminal illness somehow more bearable.  That’s the nonsense of those who’ve not been there.  I can’t prove it of course, but on good grounds I’d stake my life on it, that beyond death will be another great adventure; but first I have to get finish this one.

RIP Stephen Hawking.

The Theory of Everything - a personal view

Jane and I don’t often get to the cinema these days, but thanks to the good offices of a friend we did get to watch The Theory of Everything last week.  It’s the film based on the memoir of Jane Hawking, wife of physicist Stephen Hawking, Travelling to Infinity (a revision of Music to Move the Stars), neither of which I have read – yet.  Clearly the reason I wanted to see it is because I have a similar sort of Motor Neurone Disease to the professor, although my survival won’t be as long as his since I was diagnosed in my early 50s. 

So what did I think of it?  Contrary to expectation, I did not break down in tears or howl – which is strange since it takes very little to trigger off outbursts of embarrassing emotion when I’m watching a remotely romantic or sad scene, as my family will attest.  And the film is emotional, focused as it is on the relationship between the amazing Jane and the remarkable Stephen.  I puzzle as to the reason.  Maybe it’s because I was checking off the familiar symptoms and admiring how accurately Eddie Redmayne (Stephen) had captured them.  It is a truly remarkable performance uncannily capturing, I gather, his mannerisms and his voice (until his tracheotomy).  I recognized the eccentric clumsiness, knocking things on the floor, the tripping over feet, the helpless falling to the ground and being unable to help oneself up.  The alarming choking fits were familiar, as was Jane’s matter-of-fact remedy of thumping between the shoulder blades.  We’re familiar with Jane understanding the inarticulacy of MND and interpreting it clearly for others.  Yes, technically it was brilliant.

I also found Felicity Jones’ portrayal of Jane quite beautiful and, by the real Jane Hawking’s account, very true to life.  In my experience there’s an astonishing strength in MND caring spouses.  As in the film, it is undemonstrative, almost matter of fact.  What the film is unable to show, however, by its very nature, is the emotional toll of the year-on-year care for someone you love who is progressively deteriorating in spite of all your efforts.  It’s possible to debate whether the usual frighteningly rapid types of MND or the exceptional protracted types are easier to deal with, but this truly is a case when comparisons are odious.  Each is equally hard in different ways.  All the film can do is highlight incidents which exemplify the strain imposed on both Stephen and Jane by his illness.  But believe me, being the ill person is easier than being his carer/partner.  The sustained pressure of being sole carer and mother of three growing children beggars belief.

In my view Jane is the hero of the film.  She makes the commitment to love and cherish Stephen in sickness and in health till death parts them, we gather, and sticks to it, despite our and his family’s scepticism.  After an initial diagnosis of two years of life, the marriage in fact lasted thirty years, until it fell apart when an exhausted Jane was replaced in Stephen’s affections by the exciting nurse, Elaine Mason (played by Maxine Peake).  Jane’s close platonic relationship with choirmaster, Jonathan Hellyer Jones (Charlie Cox), in due course ended in reality in their happy marriage.  The film, I gather, exercises some artistic licence with the facts of Travelling to Infinity, but sticks fairly faithfully to the story. 

For me a crucial moment was when Stephen had gone to the opera and had a coughing fit, which laid him up in hospital (in fact in Geneva) with pneumonia, while Jane had taken the children camping with Jonathan.  Jane rushes to his bedside where he lies unconscious on life-support.  The doctor faces her with the critical decision: shall he withdraw the life-support?  Now conventional wisdom would say, let him have a merciful release from an undignified life of disabling terminal illness.  The doctor adds that the only way to save him is to give him a tracheotomy (an incision in his throat) meaning he won’t ever be able to talk at all.  For Jane it would have been an easy way out and for Stephen a merciful release.  Whether it is her faith in God or her faith in her husband, she has no truck with the doctor’s advice and refuses to give permission for removing life-support.  Gradually, as we know, he recovered, and went on three years later to publish A Brief History of Time, which gave him his fortune and his international celebrity.  As he says in his answer near the end of the film, “However bad life may seem, there is always something you can do, and succeed at.  While there's life, there is hope.”  Professor Hawking has lent his support to the campaign for assisted dying.  It’s ironic then that, had his wife in 1985 followed that campaign’s logic, he would not still be alive and have the prospect of fulfilling one of his ambitions, to travel in space.

Despite popular myths, I suspect that neither Professor Hawking's determination to fight the disease nor Jane’s care actually served to prolong his survival.  Motor Neurone Disease is implacable, and no amount of will power makes much difference to its course.  The truth is that at diagnosis it’s hard to tell the variant of the disease, and that the average survival is two years.  However there are different sorts, as I’ve indicated.  And it is the passing of time that proves if you are destined to outlive the average.  Clearly giving up hope and receiving poor care would contribute to an earlier demise, but MND marches on whether fast or slowly.

What is the power and the attraction of the film?  I suspect that for most people it is the paradox of the brilliant scientific mind trapped in an increasingly helpless body – and the incredible determination of both central characters that not even the greatest odds should defeat their resolve.  It’s also a love story of course, of a peculiarly poignant kind, or to be more accurate it’s two or three love stories.  Maxine Peake captures an ambiguity in Elaine’s relationship with Stephen, which never has quite the tenderness that Jane demonstrated for him.  There’s admiration for the great man and a hint of professional ownership.  It’s an impressively subtle performance.  Charlie Cox, the fourth in the love story, gives a restrained performance of the widower, Jonathan, which well reflects the tension of his attraction to Jane and his respect for her position as Stephen’s emotional and physical mainstay.  I thoroughly believe the film’s account of the dynamics of the four central characters.

Eddie Redmayne has deservedly won an award for his bravura portrayal of Hawking.  I very much hope that Felicity Jones, in her equally demanding role, receives the recognition she merits.  That gritty determined commitment which constitutes caring for a loved one is far from flamboyant but is heroic.  I hope she receives an award for all the Janes who never get the recognition they deserve, and whom she sensitively and strongly represented.

The film is called The Theory of Everything – the elusive object of Stephen Hawking’s scientific quest.  I’m left wondering whether the meaning of everything isn’t more important and whether Jane hasn’t found it already.

MND - what's your dream?

Following on from my last post, Bo Stern whose husband, Steve, is a long way down the journey of ALS/MND writes an inspirational blog, The Difference of Day and book Beautiful Battlefields, both crafted in the crucible of her own experience. Yesterday, Martin Luther King Jr Day, she posted this. I love that last paragraph: "I guess, I am not wishing you a quick way out of your battle: but I am believing for you and for me, that every square inch of our battleground will be redeemed. And on that ground, beauty will grow, wild and free."

"It’s been a tough couple of weeks on the ALS frontlines, and last night was especially hard, filled with breathing mask difficulties and some scary choking episodes into the wee hours. I’m sure every serious illness comes with problems for which there are no solutions, but ALS seems to specialize in them. 

I often feel helpless and useless, sitting beside Steve while he chokes and tries to find his way back to regular breathing (and then apologizes for keeping me awake). This morning, my facebook newsfeed is filled with tributes to another friend, lost to this battle. We are expecting to say farewell to several more within the next few weeks. And sometimes it seems we’re no closer to finding a cure than we are to achieving Lou Gehrig’s batting average (.343!)

But today I am home from work because it’s Martin Luther King, Jr. day. And, though I know we still have far to go in achieving true racial reconciliation and equality, I wonder if, in his lifetime, he could ever have imagined that his name would be attached to a national holiday. As he fought on the front lines of racism and segregation, how could he have known how significantly he would help to alter the course of history? He just did the work. And he believed. And I’m guessing sometimes it felt like he was believing his way through quicksand, because he said this: 
“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” MLK 

I am working at believing. Believing for a day when breakthroughs will come. When science will crack the mysterious code that keeps so many suffering. I am believing that, even if there’s never a national holiday to celebrate the eradication of this relentlessly brutal disease, that my grandchildren and great grandchildren will gather for dinner somewhere and the same time every year. And they will raise their glasses to their strong, valiant, soldier of a granddad…who never stopped fighting. 

I wonder: what are you believing for today? What seems impossible? I am wishing you the strength to stand in the trenches and the strategy to make inroads that generations will thank you for. I am wishing you life and joy and peace in the battle, though sometimes those things seem impossibly incongruent. I am wishing you the bravery of Abraham Lincoln and Amelia Earhart and Malala Youfsazai. Because we all have a story and we all have a storm. May we have the faith to believe with Martin Luther King, Jr., that “unearned suffering is redemptive.” 

So, I guess, I am not wishing you a quick way out of your battle: but I am believing for you and for me, that every square inch of our battleground will be redeemed. And on that ground, beauty will grow, wild and free. 

Let Freedom Ring, 

Bo"

"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.

Just visiting

I don't know what it indicates, but it seems I like writing to order. Last week my friend, Anita Matthias asked me if I'd like to write a guest post on her blog, Dreaming beneath the Spires. This is the way she describes it: “Dreaming Beneath the Spires attempts practical theology: examining the intersection of faith and daily life. It also meanders into books, writing, art, travel, gardening, motherhood and domesticity!" Its title of course echoes Matthew Arnold's description of Oxford in his elegy in memory of his friend, the poet Arthur Hugh Clough, Thyrsis, seen from Boar's Hill (between the city and the Vale of the White Horse where we live). It's a neat and humble way of adding variety to your blog, it seems to me, and probably of increasing your readership. 


Anyway, I rose to the bait and spent Friday thinking about Anita's challenge. This was the result (Tasting the goodness of God in the land of MND). 

Anita sends me a message on Facebook. Would I think about a guest post on her blog: “Perhaps on how you saw and discovered God's goodness (if you did) amidst the unexpected disability. So it will sort of sum up ‘My Donkeybody’  in a blog post...”? And I sit at the table gazing out of the window, wondering, “What have I got to say?” I was diagnosed with a Motor Neurone Disorder in 2002, and expected to go the way of the vast majority of MND patients and to be dead within a couple of years, after a rapid and distressing loss of muscle control.

Of course, I was a vicar at the time and had had a Christian faith as long as I could remember. That meant, according to some people, that it was especially incomprehensible and unfair that this random disease had hit me and, according to others, that I had an unfair advantage over others having the crutch of faith to soften the blow.

As it happened, evidently, I don’t have the usual ALS but the rare PLS (Primary Lateral Sclerosis) - if you like I have the protracted rather than the accelerated form. One of my friends with the same type was unsure which was preferable, a quick dying or a slow one. Personally, I’m glad still to be alive. However, I am 100% dependent on others for my survival. From getting up in the morning to getting undressed at night, I need help; getting fed, using the toilet, having a shower, going out - all require a carer, which in my case means Jane, my wife, unless she breaks her collar-bone as she did recently. Do I enjoy it? No. I wish I was able to walk on the Welsh hills with Jane and the dog, to feel the wind and jump the streams. I wish I could chat to my grandchildren without sounding monstrous. In 2010 I wrote a book with a young mum in South Africa, Jozanne Moss, who also had MND (‘I Choose Everything’). Her first section is “I wish...” in which she vividly lists the things that she misses or knows she won’t be able to do in the future: “I wish... I wish...”. In her conclusion she says, “I might not be able to be the mother I always wished I could be, but I am the mother that God intended for me to be for Luke and Nicole, in order for them to know and love Him.” It’s heart-wrenching. She died on 6th February. No, I don’t enjoy the frustrations. I regret what I’ve lost.

In one way, I envy Jozanne now, because presumably she sees clearly what she previously held on to by faith. As I look out through the french windows, the far side of the road is virtually invisible. I can just distinguish the outlines of the estate houses through the fog. But at a quick glance you wouldn’t know they were there. Even the other side of the garden, which isn’t big, is misty. Only the trough right next to the window retains its vibrant colours. As I reflect on Anita’s challenge, for that is how it feels (“how you saw and discovered God's goodness”), it seems as though this view is a metaphor for my perceptions at the moment. It feels as if a fog has descended on my old certainties.

Of course I know that the estate is there. Only yesterday I was winding my way in my wheelchair through its snickets in the warm sunshine to Cornerstone, the café where I’m always welcomed. Nothing’s changed about the estate, but my view of it has changed. Some years ago, God came and strangely warmed me. “Falling in love again” isn’t an adequate description for what that did to me, but it left its indelible mark. Perhaps that’s why I don’t doubt that God’s love is there; and yet now it is shrouded in mystery. Lovely friends with MND have died, and I can’t give an answer as to why they had it, anymore than why God who is love permits all the natural catastrophes and any of the personal tragedies which bedevil our world. If “all shall be well and all manner of thing shall be well”, which I’m still convinced is true, please don’t ask me to begin to explain how. That love is huger and more mysterious than the measures of my mind.

And yet I have evidence, even in the frustrations and physical limitations of my disease, of that love. A few weeks ago, on Ski Sunday, there was a remarkable interview with disabled skier, Peter Dunning, who lost his legs in an IED explosion in Afghanistan. "People may think it's the most strangest thing that I'm saying, but I think that getting blown up is one of the best things that's happened to me. I'm such a different person than I was. Before I was a bit of a lads' lad; now I'm more focused, more determined, and everything, to achieve what I want to achieve, like getting to the Paralympics, and progressing on from there." I can understand that. I’d prefer not to have MND. I’d rather not have the prospect of gradual decline and eventual fall. But what a gift to discover, for example, that, as I become more of a useless “burden”, it doesn’t even occur to my family and friends to stop loving me! In fact they want to carry me. And it’s incredibly liberating to discover that my value lies not in what I do, however impressive, but in what I am, warts and all.

I once made a list of where I’d found God’s love in my disability, eight gifts gratefully accepted. It began at home with the unconditional love of my family, and continued with the faithfulness of friends and the kindness of strangers; the care of professionals and MNDA volunteers. There’d been instances of unexpected provision over and above my needs. Then I recalled moments of beauty, like dew-bejewelled spiders’ webs, and moments of truth, when the Bible seemed to speak. And crucially the gift of bread and wine received as Christ’s body and blood given for me came to rescue me when my mind staggered and gave up.

I, like Peter Dunning, am a different person from who I was. I’m conscious of the mist, of the mystery that is God’s love. I wouldn’t now insist that everyone takes my route to Cornerstone. There are more paths than I’ve explored. I’ve found his love in unexpected people and paces. In fact, in a profound way, life has become more exciting, more of an adventure. I suppose I focus on what’s within my range, like the flowers in the trough, harbingers of spring, bursting with hope, those eight signs of God’s love given to me. Meanwhile I love Tennyson’s pilot, guiding his boat into harbour, whom he hoped to see face to face, when he had crossed the bar. St Paul spoke of  that Love: “For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.”

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."

Christmas thoughts from my chair

While there seems to be determined effort in some quarters to remove the Christian message out of Christmas, such as items about trend towards secular carol concerts citing Raymond Gubbay's 120 Christmas concerts nationwide, not mentioning the astonishing fact that last year 41% of Londoners attended carol services, there was a welcome exception on BBC's Countryfile last night, which created a traditional village celebration with none of the sceptical airbrushing that we've become accustomed to. The Christian elements of the festival were straightforwardly explored, from the star to the God pie (three-cornered mince pie representing the Trinity) to the animals. It was thoroughly uncynical and refreshing. Thank you, BBC.

Coincidentally on Friday night David Cameron had hit a raw nerve with some in a speech in Oxford marking the 400th anniversary of the Authorised Version of the Bible, in which he talked about the importance of the Christian heritage of our country. He also said it was "easier for people to believe and practise other faiths when Britain has confidence in its Christian identity". "Why? Because the tolerance that Christianity demands of our society provides greater space for other religious faiths too.""Many people tell me it is much easier to be Jewish or Muslim here in Britain than it is in a secular country like France," he said. "And because many of the values of a Christian country are shared by people of all faiths and indeed by people of no faith at all."  


Sadly the speech wasn't quoted on the Radio 4 news that night, only a predictable sound-bite from humanist ex-MP, Evan Harris, saying that restating our Christian history was divisive of religious groups - and anyway such ethical principles as "Do to others what you'd like them to do to you" predate all religions by thousands of years. Of course he adduced no evidence for his view, merely that they were rational principles. (Isn't reason God-given anyway?) He's quite wrong, of course, about the divisiveness of a distinctively Christian stance. When I taught in a multi-racial school in Oxford, it happened to be a Church of England school, founded by the Cowley Fathers to bring education to the poor areas of East Oxford. (The Christian contribution to education and in social involvement, by the way, is something often ignored or airbrushed out by faith's detractors.) Significantly ours was the school of choice for local Muslims, because they preferred a school where faith in God mattered to one with no religion. We used to enjoy our 6th-form assemblies in which Christian, Muslim, atheist, black, brown and white shared and discussed their faiths. Divisive? You're joking!

For someone who has no faith in God, it's a simple mistake to make imagining that different faiths can't coexist harmoniously. (It's also a lie fraught with danger, if not inciting hatred.) For many centuries they did so in the near middle east, as William Dalrymple's From the Holy Mountain beautifully records. And just last week I read this fascinating news item from Jerusalem:
"This holiday season, many evangelical Christians and their families are using the Hanukah Tree Topper and Star of David Tree Topper to crown their Christmas trees. The idea was the brainchild of Morri and Marina Chowaiki who have sold many thousands of the decorative 'menorahments' after making one to put on top of their own Christmas tree because they couldn’t find one in any store. The couple say that they have received many orders from people who want a symbol of Israel and peace on their tree and have received, 'tons of positive feedback.'"

There's a trenchant (and often misquoted) comment by Ben Stein, inter al speech writer for Richard Nixon, which was broadcast on CBS on 18th December 2005.
"Here at this happy time of year, a few confessions from my beating heart:

"I have no freaking clue who Nick and Jessica are (US reality TV "couple"). I see them on the cover of People and Us constantly when I'm buying my dog biscuits. I still don't know. I often ask the checkers at the grocery stores who they are. They don't know who Nick and Jessica are, either. Who are they? Will it change my life if I know who they are and why they've broken up? Why are they so darned important?

"I don't know who Lindsay Lohan is either, and I don't care at all about Tom Cruise's baby.

"Am I going to be called before a Senate committee and asked if I'm a subversive? Maybe. But I just have no clue who Nick and Jessica are. Is this what it means to be no longer young? Hm, not so bad.

"Next confession: I am a Jew and every single one of my ancestors was Jewish, and it does not bother me even a little bit when people call those beautifully lit-up, bejeweled trees Christmas trees.

"I don't feel threatened. I don't feel discriminated against. That's what they are — Christmas trees. It doesn't bother me a bit when people say 'Merry Christmas' to me. I don't think they're slighting me or getting ready to put me in a ghetto. In fact, I kind of like it. It shows that we're all brothers and sisters celebrating this happy time of year.

"It doesn't bother me one bit that there's a manger scene on display at a key intersection at my beach house in Malibu.

"If people want a creche, fine. The menorah a few hundred yards away is fine, too. I do not like getting pushed around for being a Jew, and I don't think Christians like getting pushed around for being Christians. I think people who believe in God are sick and tired of getting pushed around, period. I have no idea where the concept came from that America is an explicitly atheist country. I can't find it in the Constitution and I don't like it being shoved down my throat. Or maybe I can put it another way. Where did the idea come from that we should worship Nick and Jessica and aren't allowed to worship God as we understand him? I guess that's a sign that I'm getting old, too. But there are a lot of us who are wondering where Nick and Jessica came from and where the America we used to know went to." 

Rather wonderful crib in Sorrento Cathedral

So to my friends, of whatever colour and creed, I wish you a happy Christmas and a prosperous New Year (I guess there's more hope of the former than the latter!). Hopefully you'll reciprocate in the way that suits you best.

On the radar?

Last Wednesday I spent the day (well, from midday to 5 o'clock) being interviewed for a 2nd-year Film Production assignment, by three students from the University of Gloucestershire. The documentary was, predictably, a "balanced" 9-minute film on assisted suicide. I was providing the balance. It was a long afternoon.

Near the end the chap interviewing said he had two questions from one of Dignity in Dying (formerly the Voluntary Euthanasia Society)'s extensive staff, Mylinh Cao (their press trainee). My ears pricked up at that point. I felt vaguely flattered that I featured on DiD's radar!


First question: "We've noticed that your articles don't give you the title 'Rev' nowadays. Is there a reason for this?" Answer: "a. I'm retired. b. It's no secret. c. It's irrelevant. d. It's just cheap for people to diss views with a 'He would say that, wouldn't he?' whereas the arguments are too important for that.


Second question: "Is your attitude to assisted suicide a result of your religious beliefs?" Answer: "My view is primarily based on societal reasons. It's to do with the effects on the disabled and aging. A society that doesn't value human life is in trouble. So is one that allows people to terminate each others' life. Clearly my faith in God is important and informs all my life, including my philosophy of life. But in fact everyone has a faith of some sort - whether it's in God, or in science, or in technology, or in atheism, or in nothing. We all start with presuppositions. The question is what's the substance of the arguments.

I was interested to read that Canada has its own phoney enquiry into assisted suicide which has just reported. I read this on the Secondhand Smoke blog:

I Told You The Fix Was In On Canadian Euthanasia Panel

Wednesday, November 16, 2011, 12:11 PM

Wesley J. Smith

The in-the-tank media is huffing and puffing, trying to make something important out of an entirely predictable recommendation by the Royal Society of Canada commission to legalize euthanasia.  But commissions can be created to obtain a specific result, as this one was and did.

In fact, I told you this very thing would happen two years ago, to be precise, on October 28, 2009.  Here’s the Secondhand Smoke post, “Stacking the Deck for Euthanasia in Canadian ‘End of Life’ Commission” in its entirety:”

“Expert commissions” to advise on contentious issues of public policy are usually political tools designed to come to a predetermined conclusion in order to pave the way for a desired  policy changes.  Remember that as we take a look at a new commission being appointed by the Royal Society of Canada to look into end of life issues.  From the story:

Queen’s Philosophy professor Udo Schuklenk has been selected to head a prestigious new international panel on “End-of-Life Decision Making” in Canada. Appointed by the Royal Society of Canada, the expert panel will investigate key aspects of this critical issue – including voluntary euthanasia and physician-assisted suicide – and prepare a public report.

Stories such as this never seem to look deeper than the job titles of the panelists, as if they come to their work with no preexisting positions. So, I decide to check, starting with Udo Schuklenk.  What a surprise: He’s a pro euthanasia philosopher. How do I know?  He’s said so.  For example, in an essay explaining why he is an atheist, he wrote:

No matter how unbearably patients suffer due to illness or injury toward the end of their lives, the world’s monotheistic religions stand as one in their rejection of many dying patients’ requests to end their lives in dignity. That we may well be of sound mind, and that there is no prospect of our condition improving, makes no difference to their stance. Our own considered judgment that life is not worth living any longer counts for nothing to organized monotheistic religions. According to them, we are not ethically entitled to ask for physician assisted suicide or voluntary euthanasia. This is surprising, given that at the end of our natural lives churches have promised us that we would be going to heaven – or hell, as the case might be. If at the end of a decently lived life we would go to heaven and enjoy eternal life, why are they fighting our earthly death so vigorously? None of this makes any sense at all if we take religious beliefs about our afterlife seriously. Once again substantial, avoidable human suffering is a direct consequence of religious interference with our end-of-life decision-making.

I don’t care about his religious views, but to chair a panel with such a clear view in favor of assisted suicide, indicates the direction in which the commission’s recommendations are expected (designed) to go.

But perhaps I am being too cynical.  Let’s see who else is on the commission:  Ah, Scot philosophy professor Sheila McClean who wrote The Case for Assisted Suicide, a book described as arguing fervently in favor of legalization.  Hmm, I wonder how she will vote?

Another commissioner is a Dutch euthanasia researcher.  Cute.

Then there’s Jocelyn Downie, author of Dying Justice, a book urging the decriminalization of both euthanasia and assisted suicide.  The bias isn’t even subtle.

I spent some time researching the views of the two remaining members, but neither seemed to be particularly involved in the issue.  So let’s count them, at least for now, as neutrals. No matter: Even assuming both are as adamantly opposed to assisted suicide as their co panelists appear to be for it, the deck is stacked, the fix is in, 4-2 for permitting assisted suicide in at least some cases.

The next step in this Kibuki Theater will be for the media to trip over themselves to report breathlessly that “the experts” have deeply pondered, and determined–after much hand wringing, there is always hand wringing–that assisted suicide should be allowed.  It is all so scripted and predictable.

Gee, I was right.  But then, on these matters, I usually am.

Watch out for the same coming here when the so-called "Commission on Assisted Suicide" under Lord Falconer reports in the next few days or weeks. You may recall that 9/12 of the commission members had previously pronounced in favour of assisting people to die. The Commission is funded by Terry Pratchett (assisted suicide campaigner), and the brainchild of ... guess who? ... Dignity in Dying - otherwise known as ....