Migration panic

Oh for goodness’ sake! When will our politicians and pressmen stop frantically whipping up this pernicious xenophobia which apparently lurks like a virus just beneath the skin of us little Britons? Scarcely a day passes when the spectre of an island overrun with scarcely human “foreigners” is conjured up by the three main party leaders, like Macbeth’s witches, with Nigel Farage like a malign Hecate pulling the strings, abetted by the oh-so reasonable Sir (no less) Andrew Green of the avowedly “non-political” Migration Watch.

Ken Clarke, one of the few Tory ministers with guts enough to resist the populist tide, asserting that immigrants had made Britain “far more exciting and healthier”, had No 10 Downing Street (presumably his nibs himself) quickly ticking him off, and at the same Nick Clegg (Lib Dem) and Rachel Reeves (one of Labour’s rising stars) denouncing the supposed epidemic of benefit immigration. Our Ken had it about right when he said, “The idea that you can have some fundamental debate that somehow stops all these foreigners coming here is rather typical rightwing, nationalist escapism, I think.”

Mt Kenya from Chogoria

What a sad day it is when we have reached the point of closing what used to be known as our bowels of mercy because of someone’s skin-colour or language or preferences in food – and country of origin! Continually closing your bowels leads to constipation. I was reminded watching Simon Reeve’s The Tea Trail on BBC last night, traveling through Kenya from Mombasa to Kericho, of my gap year which I spent on the east side of Mount Kenya. It was within very few years of the end of the Mau Mau internments – about which I remember one of my fellow-teachers had family experience. He and many in that part of Kenya would have had good reason to hate an Englishman like me. And yet he was consistently kind and friendly to me, and wherever I went I was welcomed with the utmost hospitality. If one of the teachers' cars came a cropper on the potholed murrain roads, there was no lack of willing hands to rescue us. It’s a sobering fact that “Great Britain” is now less hospitable than the former colony, which we once sought to civilise. Our policy-makers now are seeking to make conditions on access to medical help or social care for the alien and sojourner. We consider such things our right and ours alone. We seem to have lost any humanity we once possessed, and become introspectively constipated. 

Keep administering the laxative of common sense, Mr Clarke, and common humanity. As Charles Kingsley put it, "Do as you would be done by."

Thankfully, looking back

Well, it’s been quite a year, in my book.  Internationally, it’s been a bit of a mess, with seemingly endless blood-letting and just some hopeful glimmers such as the breakthrough in the Iranian nuclear talks.  Nationally, it’s hard to know what to think, with, apparently, economic recovery on its way (hurray!) and yet, clearly, standards of living still falling and food-banks multiplying.  So leaving things too complicated for me aside, let me reflect on my own past twelve months.

Early in the year, the two big ecclesiastical appointments caused me to suspect that the Almighty hadn’t nodded off.  He’s the one to break the mould – and in Justin Welby first and then in Jorge Mario Bergoglio the world was suddenly faced with an Archbishop and a Pope of very different characters from any of their predecessors right back to the first century.  Justin Welby today concurred with Time magazine’s identification of Pope Francis as Man of the Year.  I must say for me they are both outstanding examples of Christian leadership, men with the moral mettle to practise what they preach.  Francis “almost persuades me” to be a Catholic - good thing Justin's there too! 

I’ve been kept quite busy talking about ending life well, a number of times at St Mellitus’ College in West London and a couple of times on TV.  The former I especially enjoyed.  I suppose it was partly the erstwhile teacher in me; and it was partly having a sympathetic audience prepared to take the trouble to understand my gob-stoppered speech.  It’s something, as you know, that I feel strongly about, and which I think is under threat in the very country where the hospice movement began.  As Dame Cicely Saunders, its pioneer, once said, “You matter because you are you. You matter to the last moment of your life, and we will do all we can, not only to help you die peacefully, but also to live until you die.”  That should be the motto of all geriatric and terminal care. 

Well, certainly, helped by Jane and family and friends, this year I have continued to live – and to live a fulfilled life.  I have had moments of desperate frustration, part and parcel, as a friend of mine recently put it, of  “The joy and depths of this terrible, painful and yet wonderful journey of loss, disability and dependence - the gift that has been given to us.”  Yet I have had times of great joy, such as the week’s holiday with all our family in the middle of Devon in the sunniest August for years; getting down and into the sea perched on a bulbous bouncing beach wheelchair; getting to know our daughter’s rapidly growing special needs’ therapy puppy, and getting to know new friends.

Two particularly special friends we made this year are Esther and her partner, Julie.  It’s not often that a chance encounter completely changes one - I'd call it a "God-moment".  But hearing Esther explaining vividly the prolonged pain and exclusion she’d endured among Christians because of her sexual orientation was the final confirmation for me that I and many like me had long been responsible for a gross injustice in the very community which should be marked by justice and love.  Followers of this blog will perhaps remember that I have long admired faithfulness in same-sex friendships.  However now I believe something more, and that is that sexual orientation is not a lifestyle choice, but an innate given, or gift.  How can we withhold love and welcome from our sisters and brothers?  I think we should bless them.  It will for many seem an unremarkable conclusion.  Equally for many it will seem heresy.  There it is.  It seems I keep on learning - slowly. 

I’ve not been able adequately to express the power of that meeting and my present conviction.  The best I can do is recommend my book of the year, given me at Christmas: Unconditional by Justin Lee (subtitled “Rescuing the Gospel from the Gays-vs-Christians Debate” published this year by Hodder & Stoughton, also published as Torn in the US).  If you don’t understand the hurt gays endure in the Church, this will give you some idea.

My DVD of the year has to be Les Misérables, that remarkable achievement of performance, cinematography and, of course, of story-telling.  I forbad myself seeing it in a cinema suspecting I would weep uncontrollably and loudly, and so waited for the DVD to come out.  I didn’t weep uncontrollably, although I confess Anne Hathaway’s extraordinary "I dreamed a dream" did reduce me to tears.  However it’s the film’s unbearably potent message of forgiveness and love that most moved me and conjures the dream of how radically revolutionary a society based on it would be.  It would be the Kingdom of heaven.

My woman of the year, apart from members of my family, is, I think, Jack Monroe, a deservedly popular blogger, A girl called Jack looks back, who in her own words “started this year living – existing – on a £10 a week food budget topped up with five items of food from the Storehouse food bank once a week. (And) ended it with a recipe book deal, baking biscuits on Woman’s Hour, with a Guardian column, a debate in the House of Commons and regular political and campaign pieces in the Daily Mirror.”  She came across my radar when she was campaigning for the poor and petitioning for a parliamentary debate about the rise in food banks.  I just like her.

My man of the year, apart from members of my family again, is – sorry to be predictable – Pope Francis.  Here’s quite a good summary of why (not mine): Why Pope Francis is person of the year.  I’m sure there are thousands of less high-profile people who are equally acting out the good news of Jesus Christ, but it is quite something to be in a position of such power and temptation and to maintain one’s integrity and humility.  No doubt he has made and will make mistakes.  After all he is human.

Talking of the all too human, my sporting flop of the year has to be the England men's cricket tour of Australia this winter. What a craven capitulation!  The less said the better.  And is the sporting triumph the second consecutive “British” win of the Tour de France by Chris Froome, or the “British” Men’s Singles victory at Wimbledon for Andy Murray?  I guess I'd go for the Scotsman.

My outing of the year - well, I'll choose our two to Stratford on Avon, first to see As You Like It, with Pippa Nixon outstanding as Rosalind, to celebrate our wedding anniversary, and secondly to see Nancy Meckler's brilliant production of All's Well that Ends Well in company with our delightful out-laws.

So another year ends.  And I’m looking forward to my favourite morning.  Tomorrow, I hope to wake up beside my lovely wife and realise that I’ve been spared to enjoy yet another year of discovery, starting with the Vienna New Year's Day concert, coffee and croissants..., and then who knows what surprises and new or renewed friendships?  Lord, bring it on! 

Sharing Love at Christmas

I'm a great admirer of Jack Monroe, the young mum who a year ago was homeless, and this year led the campaign to have the steeply rising number of food banks debated in the House of Commons, which took place last week with the government, rather than listening, whipping its MPs to prevent an enquiry about the reasons. Nevertheless it was an achievement that food poverty in 21st-century Britain was given two hours of Parliamentary and television time.

Jack writes a blog (and a Guardian column) which at the moment is about having a "cheaper little Christmas" without compromising ideals such as using organic and free-range products - full of useful tips. However, today's is different. She quotes a Facebook status from one of her friends, which I think is so good, I'm using it as my Christmas greeting to you. 

Jack Monroe with her son

Love at Christmas, by Sharon Jaynes

Posted by Jack Monroe (MsJackMonroe) December 23, 2013

A friend posted this on her Facebook page this morning, and I thought I would share it with you. It comes from the book of 1 Corinthians, 13, verses 1 – 13.

"If I decorate my house perfectly with plaid bows, strands of twinkling lights, and shiny glass balls but do not show love to my family, I’m just another decorator.

"If I slave away in the kitchen, baking dozens of Christmas cookies, preparing gourmet meals, and arranging a beautifully adorned table at mealtime but do not show love to my family, I’m just another cook.

"If I work at the soup kitchen, carol in the nursing home, and give all that I have to charity but do not show love to my family, it profits me nothing.

"If I trim the spruce with shimmering angels and crocheted snowflakes, attend a myriad of holiday parties, and sing in the choir’s cantata but do not focus on love, I have missed the point.

"Love stops the cooking to hug the child. Love sets aside the decorating to kiss the husband. Love is kind, though harried and tired.

"Love doesn’t envy another’s home that has coordinated Christmas china and table linens. Love doesn’t yell at the kids to get out of the way. Love doesn’t give only to those who are able to give in return but rejoices in giving to those who can’t

"Love bears all things, believes all things, hopes all things, endures all things. Love never fails.

"Video games will break, pearl necklaces will be lost, golf clubs will rust. But giving the gift of love will endure.

X "

I'd just like to remind you that Love came down at Christmas, and wish you much love in the next few days.

Michael

In the public eye

I really don't enjoy being in the public eye, but Jane and I were on Channel 5's evening news tonight: http://www.youtube.com/watch?v=227RAHqVDiA#t=12. We'd been interviewed about assisted suicide, which is in the UK news again because there's an appeal case before the Supreme Court basically seeking to legalise the practice for some. It's really a continuation of the Tony Nicklinson and Paul Lamb case, arguing for doctors killing an incapable terminally ill patient who wants to die because of "necessity".

The filming took about three hours - the clip they edited (well, I must say) played for less than two minutes. I hope it provided some evidence that not everyone with a "terminal condition" and very few disabled people want euthanasia legalised. I think Channel 5 got on to us because of an item we'd done for Yahoo News a couple of months ago which came on line last week. You can see Jane and me and the dogs here: Terminally ill man on why life is our greatest gift (Yahoo). (Jess has since been put down.)

There are many reasons why relaxing our laws to allow even a limited intentional taking of life is a bad idea. But they of course lack the emotional punch and sentimental appeal of horror stories. For myself I am always slightly suspicious of highly coloured accounts of personal suffering. They seem to me to be attempts to persuade by-passing the intellect. Of course the end of life is an emotional subject, and emotion should play its part, but if we abandon reasoned discussion we make ourselves prey to all kinds of prejudice and irrationality.

So what are my reasons for devoutly hoping that the nine Supreme Court judge reject this latest assault on the sanctity of life? Here are some notes.

Unintended consequences

I don't suppose the legislators who, acting from the best of motives, brought in the Abortion Law foresaw that it would become a charter for disposing of many thousands of babies with Down's Syndrome or a cleft palate.

Hard cases

Make bad laws. Our system combines case law and legislation. The place for considering ethical issues as hard and complex as this is Parliament, not the law courts.

Compassion?

Yes, I have compassion for people in pain and disabled and terminally ill. Tony Nicklinson said to me the difference between himself and me was that I could commit suicide if I wanted. It's not actually true. But compassion doesn't really mean killing someone. It means sticking with them through pain. It means relieving their symptoms and minimising their pain. It means good palliative care.

Prof Hawking's "pet" theory ("You would let your dog suffer") is one quarter right, three quarters wrong. We had Jess put down because her life was miserable, but also because she became doubly incontinent, was likely to incur costly vet's bills, was no longer much fun to have around. 3 of 4 reasons were to do with our discomfort, not hers.

Defence of the vulnerable

I'm not concerned for myself - although I don't look forward to the process of dying - but I am concerned for the vulnerable, the disabled who don't have a voice, the depressed, for the elderly who are at risk through dementia or frailty - for those who are increasingly regarded as a burden on their families, on society, on our nation's resources. It's those people our laws should protect. The court case seems to me to be about people who are far from vulnerable. They actually are strong-willed, if desperate, and well supported.

Hippocratic oath v necessity

As I understand it, one request in this case is for health professionals (such as doctors and carers) to be allowed to take someone's life or to assist in their suicide: so for example allowing my doctor to administer a lethal injection at my request. That opens the door to doctors ceasing to be healers and carers, and becoming dealers in death. That is one of the most valuable safeguards in the DPP's Guidelines on Prosecution in respect of Assisted Dying. I guess that's why the BMA is against a change in the law.

As events proved, there was no necessity for a doctor to end Tony Nicklinson's life. He could refuse treatment and ask for only symptom control and pain relief.

Discriminatory

All of us may refuse treatment: none of us may demand treatment. To allow one class - ie. paralysed - to demand would discriminate against others and set a precedent for any to demand "treatment" as we wished.

Justice and mercy

The present Suicide Act protects the absolute primacy of life - but allows room for mercy with the discretion of prosecutor, judge and jury. It has worked, and it isn't broken. Don't try and change it.

Fear

The disabled fear a change in the law. We feel at risk. We don't want to be endangered.

Many ageing people fear it. The majority of elder abuse takes place in the home or in care homes.

The campaign for euthanasia encourages fear. It feeds on our natural fear of pain, of dying and of the unknown. And it fuels that fear.

Fear is toxic to a healthy society.

Rights

Rights only come with responsibilities. My right to life, or to death, can't be isolated. If my demanding the right to die endangers the lives of others, then my responsibility to them trumps my choice.

'My life'

Actually life isn't our possession. We are part of life.

Religion

Everyone has a philosophy of life. Mine informs my view, just as anyone else's affects theirs. However, my objections are pragmatic. I'm concerned about the consequences of eroding the law for our society. I'm concerned about cheapening life - reducing it to a commodity. I'm concerned about protecting the vulnerable. I don't want our country to go the way of Belgium, where they're moving towards euthanising children, or of Holland when we could face 13,000 assisted suicides a year. I'm concerned that we never see euthanasia as an easy way to reduce our NHS and care costs.

Politicking politicians

'Tis not yet the season to be jolly, so I hope you will allow me some disillusioned observations before we're all ho-hoing down the supermarket aisles. They were sparked off when Jane read me an extract from the Humanitarian Aid and Relief Trust winter newsletter. In it Baroness Cox wrote this:

"After one visit to Karabakh at the height of the war (between Armenia and Azerbaijan 2011), I brought back photographs of children shredded by cluster bombs. I asked the then Minister at the Foreign Office if the British Government would make representations to Azerbaijan, concerning the use of cluster bombs on civilians – a violation of international conventions. The Minster’s reply was brief and brusque:

'No country has an interest in other countries; only interests – and we have oil interests in Azerbaijan' – and I was shown out of the room." 

I shared Caroline Cox's sense of shame at being British and disappointment in our political class. This augmented later by both our Deputy Prime Minister and our Prime Minister. 

It was started by David Blunkett, Sheffield MP and former Home Secretary, speaking about the newly settled Slovakian Romas in his home city. He said: "We have to change the behaviour and the culture of the incoming Roma community because there's going to be an explosion otherwise. We all know that."

Mr Clegg, Sheffield MP too and Deputy PM, adding fuel to the fire, weighed in with: "There is a real dilemma when you get communities that behave in a way that people find sometimes intimidating, sometimes offensive. I think it is quite right that people should say so. We have every right to say if you are in Britain and you are coming to live in Britain and you are bringing up a family here, you have got to be sensitive to the way that life is lived in this country." As the Western Morning News sensibly commented: "This might all sound quite reasonable, were it not for the fact that the Slovak Roma in Sheffield have done little that could be described as either intimidating or offensive. But when it comes to gypsies, the age-old prejudices are trotted out with impunity; from the Brothers Grimm to Enid Blyton, they have been insulted and scapegoated."

The politicians should both have listened to Professor Yaron Matras, an expert on Roma culture from the University of Manchester, who accused both Nick Clegg and David Blunkett of "ethnic profiling" gypsies and claimed their use of "medieval stereotypes" was likely to increase rather than prevent the likelihood of attacks on Roma, who would inevitably then retaliate.

"People who meet Roma personally have a positive experience," said Professor Matras. "Those who get their information from indirect sources, such as parts of the media, have negative impressions – but there is nothing in Roma behaviour that is inherently more offensive or intimidating than for any other group."

One doesn't know what talks David Cameron has had in China about human rights on his current trade mission, but his press office has been keen to tell us what a success it's been, generating in a week, apparently £6 billion's worth of trade. It was sad therefore that the photo opp which appeared on the news I was watching was of him with a lady entrepeneur from the "gaming industry" who's going to invest in Britain - yippee! More of our countrymen getting into debt chasing an illusion!

And only last week, Tsar Boris, aka the Mayor of London, in the annual Margaret Thatcher lecture declared that inequality is essential to fostering "the spirit of envy" and hailed greed as a "valuable spur to economic activity". Envy and greed used to be two of the seven deadly sins. The ambitious Mr Johnson clearly thinks he knows better. I'm not sure he does, any more than he understands the mathematics of the IQ test. "Whatever you may think of the value of IQ tests it is surely relevant to a conversation about equality that as many as 16% of our species have an IQ below 85 while about 2% …" he said as he departed from the text of his speech to ask whether anyone in his City audience had a low IQ. To muted laughter he asked: "Over 16% anyone? Put up your hands. 16% have an IQ below 85 while 2% have an IQ above 130. And the harder you shake the pack the easier it will be for some corn flakes to get to the top." Well, they would do, old chap, as the IQ test is a bell-curve based round an average of 100. That's the normal distribution  - get it? 

It is truly depressing when a politician tipped by many as a future Prime Minister lauds envy and greed as economic and social virtues, and attributes wealth to intelligence and poverty to the lack of it. "You're poor, because you're stupid."

I also found it depressing to listen to another potential PM on Desert Island Discs. I'm not able to judge Ed Miliband's musical tastes, since I shared none of them, but was interested to hear what he had to say about his political assassination of his brother, David, in the Labour Party leadership election. You may remember that Ed declared he was running after David and narrowly won only with the support of the big union votes. As I heard it, his justification was that he wanted to put party before family. It was an extraordinary insult to his brother's abilities, and seemed to me a weasel way of saying, "I wanted to put self before family." I'm sorry, Ed Milicain, I can't vote for someone who lacks both selflessness and transparency.

Finally, as you'll detect, I'm quite even-handedly disillusioned with politicians of all three mainstream parties. One omission from my scatter-gun seems to be women. In fact two of the outstanding political breakthroughs have been achieved by women. The MP for Walthanstow, Stella Creasey's unremitting pressure has at last led to a U-turn by the Government on capping the interest rates of Pay-day lenders, and, on the international stage, it appears that the interim agreement between Iran and the big powers over its nuclear industry was largely engineered by Baroness Ashton, the EU's High Representative for Foreign Affairs. Women seem to be doing all right in politics.

So to redress the balance let me have a go at Cherie Blair, not exactly a politician but certainly a political figure. She was recently interviewed in The Independent. The headline was "Being a mother isn't a job. It's a relationship"  It sounds exactly like a politician's sound bite. So I looked at the article and came across what she said about being a mother. In a way it sounds unexceptionable. “Don’t say being a mother is the most important job to do because being a mother isn’t a job. It’s a relationship. The quality of the relationship is what matters . The most important thing is the relationship we have with our children.” And yet it does sound like the words of someone who can afford a nanny, someone like a... millionaire barrister, or someone... married to a prime minister, or even... better, both. You might not like to describe motherhood as a job, but whatever you call it, there's nothing more important to do well than bringing up children. And whatever else it isn't, it certainly is hard work. I would reply, "Don't say being a mother is just a relationship. It's much more than that." 

I know politics is what politicians do. But it doesn't seem to me that ours are doing it very well.

Now for the season of goodwill!

PS Here's hoping George Osborne doesn't come up with some madness tomorrow.

Serendipitous long johns

This week I've discovered the joys of long johns! It was a case of serendipity. I was looking for a fleece and came across some leggings, and then it occurred to me....

One of the snags of disability is you lack the normal means of exercise and therefore keeping up your circulation. And so your extremities get cold. Nowhere is this more true than going out in a wheelchair on cold days. I do have a sort of lower-body sleeping bag, cutely called a Cosy Toes. But that is not easy to get into and out of - and looks rather nursing-homey. I often go to bed with icy feet, which isn't kind for Jane - and sometimes wake me up.

Now I have a long prejudice against long johns. My lovely father used to wear old-fashioned thermal ones, you know the sort, cream-coloured, irritating to the skin and prone to going baggy at the knees. Sorry, I used to regard them as old men's underwear. Now, however, "layering" is all the trend in outdoor activities. I ordered the leggings. Very smart they were too - they just needed some surgery to make them suitable as male underpants. I tried them out one cold evening, and the result was a dream. Well, my legs weren't so cold.

So I explored further, and eureka!, discovered what I was really looking for. Really smart, full-length, denim blue, comfortable. I don't notice them when they're on, but as I sit and type my legs and feet are warm - and going outside to collect our new Motability car holds no fear. Hallelujah! I'm converted!

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.