Saturday, 23 May 2015

One hot Friday afternoon

Having recovered from the tremors of the General Election and having found a replacement for my coffee-drowned laptop, I'm returning to my blogging. I'm not arrogant enough to imagine my pearls have been missed!

It was a somewhat strange afternoon yesterday. I'd been catching up with Question Time, which began with questions about immigration and the National Health Service. The discussion on the latter was about 24/7 doctors. Owen Jones made a fair point about GP training taking seven years and the government taking credit for an increase in their number. A woman in the audience was saying that private care was the solution to that. Then we had to cut it short to go to the MNDA Branch meeting at the Holiday Inn at the infamous Peartree Round on the north edge of Oxford.

As we approached the Oxford ring road, the traffic tailed back and on the ring road it was nose-to-tail stationary. We made the snap decision to drive through the centre of Oxford, which seemed wise, until we reached half a mile from our destination and yet another traffic jam. As a result we arrived a good quarter of an hour after the talk had begun. That means that the comments which follow may not be justified, but this is the impression I received. A private physiotherapist who had previously worked for the NHS was talking about how physiotherapists can help people with Motor Neurone Disease.

I suspect she had asked how many people knew about the Oxfordshire PDPS (People with Disabilities Physiotherapy Service), and I guess there was a sparse response. That may not be surprising: I for one had never heard it called that. But I had been referred to a specialist neurology physio immediately I'd been diagnosed 12 years ago, and all my friends in this area, dead or alive, also have had their physios. And, because it's easier to say, we call them neuro-physios. So I'm personally not so sure how much substance there was to her implication - which is where Jane wheeled me in - that people with MND were not referred to a physio and were poorly served by the PDPS. It's true that the neuro-physios in Oxfordshire are thinly spread and that we might have a wait to see one, but I am pretty sure that the excellent Oxford MND Centre would see to it that the physio service is alerted to the most urgent cases. My level of care from my physio has been above reproach. We must not allow the NHS to become a second-class service or to be regarded as one.

One thing I reacted against was the habit of both the private physios there to refer to patients as "clients". For some reason it seemed utterly impersonal and underlined that private medicine is more in the world of business than of care. There's a widespread preference in the MND community to be referred to as people, people with MND.

On the plus side, there were two carers at the meeting, both, I think, from abroad - part of this undesirable surge of immigration (sic, UKIP). The quality of their care and attention to the people they had brought was lovely to see. One of our friends whom we've known for years looked better and happier than when we first met - which considering she, like me, has a degenerative condition is amazing. Her carer is an EU immigrant, from Poland. She's employed by an agency and no doubt gets paid poorly, too little to attract carers of a similar calibre from this country. I doubt she'd be classed as a skilled worker - but she makes a world of difference to one person with a rather nasty disease.

As we drove home, without let or hindrance on the roads, I reflected how grateful I was for the National Health Service, what a benefit immigration had been to this country and how very careful we should be before we tampered with either. And how holding meetings on a half-term Friday in May might be such a good idea!

Wednesday, 25 February 2015

Our two minutes of "fame"!

I must say happy though I am for the predictable recognition that Eddie Redmayne received on Sunday night for best actor at the Oscars - and the dedication he made to people with MND/ALS in his acceptance speech, I am disappointed that no recognition was afforded to Felicity Jones for best actress, portraying Jane Hawking. As I've commented previously his was a bravura performance of a bravura role. Her role was far from bravura and demanded a subtle contained performance, and that was exactly what she gave it: beautifully nuanced, tracing the patterns of shade and light in the highly condensed account of a relationship of more than forty years. I would have dedicated her Oscar to all the unheralded carers of us who have the disease in one form or another. As one of our friends whose wife had a frighteningly fast type of MND said to me after watching the film, "I thought it was brilliant but, oh, how painful it was to be reminded of that journey!"

On Sunday the BBC Songs of Praise team decided to base their programme round the Oscars. They interviewed Jane Hawking in Cambridge and filmed her singing in their church choir conducted by her present husband, Jonathan. She was great, very articulate and clear about her faith. Someone in the BBC had seen my previous post about the film, and thought that an interview with my Jane and me might fit in as an added extra. I suppose the parallels of my having MND like Stephen Hawking and our both having wives/carers named Jane worked nicely. So nine days previously, before we went on a short break, the film crew arrived with the presenter, Claire McCollum - loved her Ulster accent! - , and all their equipment. They certainly knew what they were up to. While Nick, the cameraman, Lindsey, the researcher, and Karen, the producer, worked away at setting up the equipment, removing the ticking clock (!), and arranging the shots, we relaxed and chatted to Claire. I suppose the actual filming took under an hour, mostly in one take - for which I was grateful as it's never easy to repeat exactly what you said (unless you're an actor, I suppose).

Anyway they soon packed up and zoomed back off to Media City in Salford, and next day we went off for a break in Devon. I put Songs of Praise on to record - of course. But we were actually able to watch it live, but it wasn't until half way through the programme that we were sure we'd appear. In what was a rather good programme over all, ours was, I think you might say, a cameo performance - being a minute or two long - but I must say I thought Karen had edited all my waffle very skilfully. As I've said elsewhere, there always things you wish you had added. When Claire asked me something about my strong faith sustaining me. My answer was something like, "I'm not so sure about it being 'strong'. Sometimes it feels I'm hanging on by a thread…". That's when I wish I'd said, "But I've discovered that God keeps holding on to me firmly."  However our bit ended positively with Jane talking about hope and then an upbeat contemporary worship song.

Afterwards it was fun following the Facebook comments which dribbled in that evening and the next day. One of the nicest comments, on Twitter, was from Claire McCollum herself:
"Feb 22 you and Jane were just brilliant! So glad u enjoyed it. A pleasure to work on this one! Take care. Btw really enjoyjng ur book. C" (Which reminds me, you can get discounted copies of My Donkeybody by contacting me on!) 

So I'm happy on this occasion both to compliment the BBC for a job well done and to congratulate the Songs of Praise department on a nicely crafted programme. And finally I must say how good the film crew were and of course how lovely Claire the interviewer was!

Thursday, 19 February 2015

Grim reaping

There's an expression, isn't there, about sowing the wind and reaping the whirlwind? I fear we are seeing its truth in the world today.

The West (and yes, I suppose I mean our government and its allies, encouraged by public compliance) has persisted in presuming to know what's best for other sovereign nations, especially but not exclusively in the Middle East. Parties of both the left and the right have waded in where angels fear to tread. And so in our name the government launched a war (with our big American brother) on Saddam Hussain's Iraq; then we encouraged the Syrian rebels to rise against President Bashar al-Assad and provided air-cover for the rising against President Muammar Gaddafi of Libya. Well, it seemed like a good idea at the time.... Well, I'm not so sure it does now. Now IS is carrying on its bloody business not so far from Europe in the chaos that is Libya. The trouble is, as Egypt's president said, is that we leave unfinished business - which extreme jihadists willingly complete, with dreadful results.

We do have a fanatical belief in Westminster-style democracy as the fit-all for every political situation. It's arguably the least worst model, but it's clearly far from perfect. Shakespeare shared the Elizabethan fear of usurping the throne from the monarch. It was like dethroning the sun from the sky. It's a tradition which went back centuries. Respecting the emperor was something Paul enjoined on the early Christians, even though Roman emperors were as corrupt as the worst of modern dictators and not known for their benevolence towards the peaceful Jewish sect. The reason is what we read in the news every day - that, whenever you create a power vacuum, all sorts of contending forces come and try to fill it; and the ensuing chaos is hellish.

Even in Ukraine where we weighed in on the pro-European side the result is proving counterproductive, provoking the Russian bear and dividing a previously united nation. What is hard to understand is the lack of imagination of our policy-makers. One question should not be too hard for them to ask themselves, and that is this: "What would we, as the British people, feel if China or Saudi Arabia were to tell us how to run our country and then do all in their considerable power to bring about the change they prescribed?" No doubt what the answer would be.

Hopefully 2015 won't be the year of the whirlwind.

Friday, 13 February 2015

Happy Valentine's or "Where is love?"

I feel I mustn't miss the opportunity of wishing all my readers (especially younger ones - not that romance need ever die!) Happy Valentine's Day. (If you're not "in a relationship" and hate the whole Valentine's thing, don't stop reading. I think our society overrates it, as I'll mention later.) In the film of the musical the orphan Oliver sings that plaintive little song, "Where is love? Does it fall from skies above?" It is the question of every human being. However you will not find the answer, I'm convinced, by watching the film, Fifty Shades of Grey​, specially released for the weekend "of love". 
There's an excellent article by Dr Miriam Grossman which I urge you to read in its entirety, headlined A psychiatrist's letter to young people about 50 Shades of Grey. It starts like this:
"I help people who are broken inside.  I ask questions, and listen carefully to the answers. 
One thing I've learned is that young people are utterly confused about love — finding it and keeping it.  They make poor choices, and end up in lots of pain. 
I don't want you to suffer like the people I see in my office, so I'm warning you about a new movie called Fifty Shades of Grey. Even if you don't see the film, its toxic message is seeping into our culture, and could plant dangerous ideas in your head. 
Fifty Shades of Grey is being released for Valentine's Day, so you'll think it's a romance, but don't fall for it.  The movie is actually about a sick, dangerous relationship filled with physical and emotional abuse.  It seems glamorous, because the actors are gorgeous, have expensive cars and planes, and Beyonce is singing.  You might conclude that Christian and Ana are cool, and that their relationship is acceptable. 
Don't allow yourself to be manipulated! The people behind the movie just want your money; they have no concern whatsoever about you and your dreams. 
Abuse is not glamorous or cool.   It is never OK, under any circumstances...." 

The writer outlines and answers 6 myths that the film (and contemporary culture) promotes. I heard Jamie Dorman, the lead male, defending the film's abusive relationship on the grounds that it was "consensual" and therefore OK. What rubbish! As the psychiatrist concludes,"There's no room for doubt: An intimate relationship that includes violence, consensual or not, is completely unacceptable.
"This is black and white.  There are no shades of grey here.  Not even one." 

And what about those who aren't romantically attached? Well, we should remind ourselves that romantic love is neither the highest nor most fulfilling of loves, including as it does naturally a large element of self-gratification - the reason it so readily gives rise to abuse. Friendship, family affection, and selfless love are great gifts. Of which the greatest is the last.

Monday, 12 January 2015

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.

Tuesday, 2 December 2014

Diverse Church six months on

One of the many downsides of MND is that it limits one's freedom of movement, not just in the small matter of daily living, but also in the bigger things of choosing how often to go out. It's a major operation, comparatively, to get out to a meeting, for example. I was sorry, last week, to miss two quite different meetings.

One was on Thursday, organised by the Oxford Diocesan Evangelical Fellowship, entitled, "Evangelical witness in this diocese in the light of Pilling, Bishop Alan Wilson, and the appointment of a new Bishop of Oxford." In the light of the accompanying write-up and attached paper, this promised to be a meeting resisting any ground being given to the gay/equal marriage move in the Church of England. I wouldn't have minded saying a bit. I don't know whether I will hear any feed-back from that meeting. The other meeting was on Saturday in London organised by the Two:23 Network, a group who describe themselves: "Two:23 is a network of Christians, connected by LGBT (Lesbian, gay, bisexual and transgender) issues, who have discovered that God loves us just as we are. This realisation frees us unashamedly to include and encourage all to discover the love of God for themselves, pursue the call of Christ and live in a way that cherishes others just as God cherishes us." I suspect the two meetings could scarcely have been more different - except that they both included worship. Now that's interesting....

I did listen to the talk given by Sally Hitchiner at the Two:23 meeting, which you can find on their website. She was talking about the group she was instrumental in founding for young Christians struggling with the faith and sexuality, called Diverse Church. It's an impressive and widely encompassing group, which supports and gives hope to youngsters who had none before. I can't give an adequate account of its scope. For that I recommend listening to Sally's talk (on Here are two contrasting quotes from it. "Being gay and a Christian is rather like finding you have incurable cancer." "Finding Diverse Church and discovering that you can be gay and a Christian is like finding Narnia."

Two things I picked up are that it's a pastoral group, rather than a political one. In other words, it exists to care rather than campaign. The other is that it's undogmatic, except for insisting that God loves each of us as we are and as we were created. And so the group includes gay young people who live together or want to find a life-partner, those who have decided to stay celibate and one married to someone of the other sex. They all accept and affirm each other. Something they have in common is that they have all suffered acutely, usually from hearing the message that God considers them, or their feelings, an "abomination". Not surprisingly many have felt or been excluded from their churches - and it seemed from God Himself. You can see a couple of their stories in this film: Christian, it gets better.

One of the most moving initiatives Diverse Church has started is handing over its Twitter feed to one member each Friday who uses the day to tell their story. I regularly follow it. It is a brave thing to undertake, as although it is done using only initials, the potential is there for hostile reactions. For many, I understand, it's the first time they have "come out" telling their story, 140 words at a time. Somehow the gradual way the stories unfold echo the tortuous journey many of the members have traveled, and emphasise the joy they experience when they discover acceptance for who they are. In my view, Diverse Church (which is not a church in the conventional sense, but encourages the Church to be as diverse as was intended) is a remarkable group of young Christians. I've learned from them. I think the Church needs to listen to them.

Saturday was World Aids Day, and Diverse Church's Twitter feed led its followers in a moving prayer, sentence by sentence, with which I finish. I felt as if the person tweeting was praying from his experience and his heart.

I'm glad I can talk to you.
You’re always there -
even when my head is somewhere else.
Sometimes I feel overwhelmed,
ashamed, afraid to face the future...
It’s hard living with a stigma.
It’s not what people say.
It’s what they don't say.
It’s the knowing smiles,
and the sheepish looks.
They all add up to a feeling of accusation.
I’m glad I can talk to you
Nothing surprises you.
You’ve been where I’ve been
You’ve felt the discrimination
Experienced the betrayal
the hurt
the name calling
the whispering in corners
the religious prejudice.
You make me feel whole again
You include me in
You make me feel understood.
Your extravagant generosity
leaves me speechless.
Words fail me as I try to say
Thank you.
You draw me
You give me a place in the picture
You tell me
I belong even when I can't believe.
Lord, you’re unbelievable!!

Heavenly Father, tonight we pray for those whose lives have been overshadowed with the fear of HIV. The prejudice they fear they'll face...
Tonight we pray for the people who are living with HIV/AIDS. Here. Abroad. Anywhere. We pray for protection over them. Love them.
Place your tender hand over them and let them know your presence. Let them know that you're carrying them through the darkest days
and walking with them even in the days they're feeling better. Heavenly Father, help to eliminate the stigma attached...
Help us to stress the importance of being tested, the importance of talking about it, and the importance of living without fear of being discriminated.
Heavenly Father, give us the courage to speak out to those who think the illness isn't 'their problem'. Let them know it is their problem...
It's their problem, because we're all brothers and sisters in Christ. We are all created in one image, we all eat of the same bread...
we all pray to the same God. The same God who created us all in His image.
Tonight, and in the days and nights to come, just give those whose lives have been affected the love and courage they need...
Give them someone to talk to, someone who will listen and someone who will just make a cup of tea when things get too tough...
Show them your love that way. Use us to do your will.
In your name, we ask this and pray. Amen!

Monday, 20 October 2014

Dignity's own goal

Dignity in Dying (formerly The Voluntary Euthanasia Society) ensured that the story of retired Maths teacher, Jean Davies, starving herself to death got maximum media coverage. This 86-year-old euthanasia campaigner wasn't terminally ill, but had a number of underlying conditions. I listened to the live interview with her daughter, Bronwen, who's a nurse in Cardiff and who cared for her mum over the last few weeks of her life, on Radio 4's Today Programme this morning. Sarah Montague did the interview, which is headlined "My mother said she had had enough" on the audio clip.

Bronwen Davies was very honest - a refreshing change from the frequent fare of political prevarication heard on the programme. What had been her reaction when her mother had told her she intended to stop eating and drinking? "I was very angry because I wanted to spend more time with her, and I wanted to go on holiday with my husband! Then I realised I was being purely selfish." But she admits, "I didn't want her to die."

It was something Jean had been contemplating for a couple of years. "She'd read somewhere that it was possible for somebody to simply stop eating, stop drinking and you will eventually die.  And we all know that's true. Hunger strikers are the example that spring to my mind." In fact she stopped drinking just two weeks before she died. 

Was the decision to starve herself, rather some quicker means of ending her life, partly, effectively, a continuation of her campaign? "I think it occurred to her, after she had started her course of action, that this could be something which would attract attention - as indeed it has done - and she took the decision without consulting me or any other members of the family, as far as I know, to contact old colleagues from Dignity in Dying, to ask if her story might be one in which the press might be interested. So she sought publicity after her decision."

You've answered the point in a way, that she was aware of the campaigning. I wonder, do you think the law should be changed? "No. I have found that this process has made me realise - I mean… I'm not a member of the Voluntary Euthanasia Society, as my mother had been for many years - and I am of the view that it's perhaps not necessary to change the law in this country, because I think if people realised that they had the power to end their lives by stopping eating and drinking - you're still entitled to medical care to relieve any symptoms - my mother didn't need any painkillers, but they were prescribed for her had she needed them - I think that, if people realised they had the power to take matters into their own hands and to take responsibility for their lives and the end of their lives in that way, there may not need to be a change in the law."

I suspect that final answer was unexpected, but it reminded me of my conversation with Tony Nicklinson who complained that it was unfair because, he said, I could take my own life and he could not take his. It was untrue on a number of counts. For one thing, I told him, he could refuse treatment for any infection - which in the end he did, dying of pneumonia.

I take the position of Bronwen Davies, Jean's brave and honest daughter. The law doesn't need changing. As it is, people have the power to take responsibility for their lives and for the end of their lives. In publicising this case, Dignity in Dying have provided evidence against their own campaign to legalise assisted suicide.