Thought for today

I was really struck by this comment today from a friend of mine with a nasty neurological condition: "I do not know all the answers but I personally look forward to the end, but I am quite happy to let God make that decision. My husband likes looking after me as do lots of people, and I would feel I would be kicking them in the teeth if I were to take away their choice." Now that's impressive selflessness.


For a view of the Dingitas factory different from the one we normally see, I recommend this article from the Mail, A daughter watches her mother die. Karen Royle talks about the devastating effects of her mother, Rona's assisted suicide. She had MND and wanted the quick exit for herself, but it left her husband  utterly lost and her family shattered. 'Compared with Mum, Dad had the better death, without a doubt,’ says Karen. 'Although his body was riddled with cancer, he died peacefully at home with us.'


You can see what my friend means.

Welsh reflections

When we arrived at Pen y Banc, I had mental energy for little else than sleeping, watching TV and thinking. I'm not a natural meditator, though clearly MND does force you to sit and stare, as the poet half-recommends.

So here are some reflections from last week.

Early (for me, i.e. 9.30 am) on Sunday we went to St Dingat's Church in Llandovery. Dingat I learn was one of the 36 offspring of Brychan, Irish chieftain and saint, of the sixth century. Well, there were a good deal more than 36 in the congregation. Just as we pulled up outside, a couple of minibuses from, I think, Coleg Elidyr, the local Camphill Residential Special Needs School, were disembarking their passengers. The service wasn't particularly inspiring, the music wasn't especially good, the liturgy was the same as ever, the sermon was comprehensible and straightforward (memorably telling us that academic scepticism about the Trinity was "a load of rubbish"). And yet it was probably the time when I have been most aware of the presence of the Holy Spirit in a church service. I was reflecting on why this should be so, and my conclusion was, "Inasmuch as you did it to one of the least of these my brothers and sisters, you did it unto me." The welcoming acceptance of those we tend to exclude from polite society was the reason for Jesus' presence. 


I recall listening the Dream Center's Youth Pastor speaking at Kingdom Faith in the mid '90s about the vision that led the Barnetts to that remarkable church in downtown Los Angeles. On the website it says, "The vision was birthed out of the fact that in 1994, Pastors Matthew and Tommy Barnett came to Los Angeles with the intention of building a church. They found that they first had to address the physical needs of this impoverished community." My memory is the vision was expressed in dialogue form: "Jesus, we want to build a church where you are present." The Lord, "Bring in the poor, the marginalised and the outcasts - I love their company and I'll be there." 

I've mentioned before the joys of the Beamer Tramper - the cross-country disabled buggy. We first came across it at Pembrey Country Park near Llanelli, and we went back there on Thursday. Blue-badge holders can book it free of charge. It allowed us to go for a really good walk together, which is a real treat. 

We made it up to the view point looking over to the Gower Peninsular, passing en route the hugest specimens of the blue wild flower, Viper's Bugloss, I've ever seen. From the wonders of nature to the perversity of humans. Once we were up there there was a puzzling spectacle below us. Men in orange visijackets and black and green bundles were spread out below us on the grass and dunes. As we came down we discovered more. It was the debris of a student event, we were told. 70 people had been working since Monday clearing up. They still had some way to go by the look of it. The ground had apparently been covered. 

When we reached the information centre, however, we were told it had been a good occasion. I gather it's not dissimilar to Glastonbury after the festival. Both fun and creative events, both leaving a lot of rubbish. I suppose there are some similarities in the natural world, such as vultures and dung beetles. We live in an interdependent world. But surely we can do a bit better than just abandoning our detritus indiscriminately behind us? We're not merely animals.

Home sweet home

We're just back from a great week near Llandovery in mid-Camarthenshire. It's where we've been before - well off the beaten track, a single-storey building attached to a 200-year old Welsh farmhouse, with lovely views over the River Towy to the Black Mountain. Being Wales the joy of the view is that it constantly changes, sometimes shrouded in rain, sometimes stunningly clear, and of course changing with the time of day.

However what's best about Pen y Banc is the amazing garden which surrounds it, created by Kenneth and Gill over the past twenty years. I reckon it ranks in its small way with the best of the great gardens like Aberglasney nearby. Sadly I can't get round it, but Jane enjoys it and takes photos so that I can see what I'm missing! Here are some pictures.

And yet, in spite of everything, it's good to be home again - and that's not because I've missed the internet! Far from it! I can't imagine being at the beck and call of a bleeping Blackberry all day every day. What a nightmare! I think they should be called Brambles - you don't want to get caught up with one.

WHO-ay!

We spent a very interesting afternoon yesterday with our curate. I was going to say he clearly keeps ungodly hours as he sent me a message when I'm tucked up and snoozing peacefully, but then I remembered that he's in church each morning to say Morning Prayer at 7.30. So I suspect it's me who keeps an ungodly timetable, and he's got the godly schedule! 

Anyway, he pointed me to the World Health Organisations Guidelines for Media Professionals Guidelines for Media Professionals on the portrayal and reporting of suicide, which ends: "There is an obligation on media professionals to exercise caution in reporting suicide, and to balance imperatives like the public’s ‘right to know’ against the risk of causing harm."

Its bullet point summary is:

• Take the opportunity to educate the public about suicide 

• Avoid language which sensationalizes or normalizes suicide, or presents it as a solution to problems

• Avoid prominent placement and undue repetition of stories about suicide

• Avoid explicit description of the method used in a completed or attempted suicide

• Avoid providing detailed information about the site of a completed or attempted suicide

• Word headlines carefully 

• Exercise caution in using photographs or video footage 

• Take particular care in reporting celebrity suicides 

• Show due consideration for people bereaved by suicide 

• Provide information about where to seek help

• Recognize that media professionals themselves may be affected by stories about suicide.

The report warns against the copycat danger of media reporting of suicide, which is well researched and accepted, especially with high profile stories. The WHO resource is well worth reading. I've no doubt that the BBC were aware of it; I'm sure Dignity in Dying (the old Voluntary Euthanasia Society) knows it very well. No doubt it's one reason they assiduously avoid the term "assisted suicide". But if Terry Pratchett: Choosing to Die on Monday made one thing clear, it was that we were watching a suicide, not the double-effect of pain relief administered by a doctor for a terminally ill patient near death.

On a brighter note, today we've heard that our great friends in Australia have had their first baby, a boy. Mum is disabled, but full of the joy of life. Congratulations! Happy Birthday, Jacob!

The law of the jungle

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


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


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

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


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

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

Commission and omission

I wrote a red-hot post about the Terry Pratchett programme yesterday, and then thought I'd see if the Guardian might like it. And so I did, and they did. This was the result: Comment is free: Choosing to Die.

Did you know that today is World Elder Abuse Awareness Day? Funnily enough, it's not been mentioned on the BBC or in the media. I only discovered this from Peter Saunders' blog, which is excellent on medical ethics and policy. In his post today he writes: "It is often argued that legalising euthanasia or assisted suicide would be a recipe for elder abuse. Given the vulnerability of many older people, who already feel themselves to be a financial, emotional or care burden on others, this is a powerful reason for not changing the law. 
"There are too many people already who have an interest, financial or otherwise, in an older person’s death. Let’s not give them any encouragement. And let’s work to honour, protect and uphold the older members of our community." 

Dr Peter Saunders

Peter Saunders is one of our nation's doughtiest defenders of human life. What the media world prefers to forget he constantly reminds us of. He is often in the front line of contumely and personal animosity. For example, I listened to a rather shrill Margo MacDonald accusing him of scuppering her euthanasia bill in the Scottish Parliament on the Nolan programme on Sunday night, as part of the BBC's three-day Pratchett Fest.

The MNDA had asked if I'd like to participate in the discussion, but as I don't trust my voice under stress at that time of night, I instead sent this email, which Stephen Nolan read out. It said it better than I'd have been able to, and expressed the widespread feeling that the BBC is really not presenting a balanced viewpoint on matters of life and death:
"I have PLS (Primary Lateral Sclerosis), a rare form of MND. My prognosis is slow but inevitable. I'm not exactly looking forward to it, but neither am I frightened by it.  I understand you're discussing Terry Pratchett's TV programme broadcast tomorrow.

"As my voice is even more rubbish at this time of night than usual, I'm just emailing.

"Obviously I've not seen the programme, and so I can't comment on specifics.  But I'm concerned about it because it sounds as if it will be one-sided with a gesture towards another view. For one thing it's presented by Terry Pratchett whose views are well known after his Dimbleby lecture. He's known to be campaigning for the legalisation of assisted dying, or suicide.  And it's been widely trailed that it will show a death of someone with MND in the Dignitas facility in Zurich in favourable terms. This could be regarded as encouraging others to do the same.

"I understand that the BBC admits this is not an unbiased programme. I'm all for a debate on the subject, but I'd like to know if the BBC has plans for a programme presented by an opponent of legalising assisted suicide. Otherwise it seems it's not being impartial, which it surely should be.

"The large majority of disabled people in a recent Comres poll indicated they were opposed to legalising assisted dying. The reason is because we fear pressure being put on us as we are costly and less valuable ("a burden").  Were assisted suicide to be legalised, no doubt its proponents would argue under great safeguards, experience has shown in places like Holland that involuntary termination of life follows - and the reason seems to me that life is no longer considered inviolable. 

"Terry Pratchett's mantra is "My life, my death, my choice". The trouble is that my choice has consequences for others - health professionals, carers, the vulnerable and the rest of society. It's taken our society a long time to stop even the state taking life. I don't want to return to the days when life is ours for the taking."

Commiserations - or celebrations

There's a great temptation if you have a degenerative condition to feel sorry for yourself. Or for your carer to feel sorry for him/herself, as usually they're your husband or wife. We were at two very different events on Saturday: one was an MNDA Coffee Morning across the village at our friends', John and Jean; the other was a ruby wedding lunch for some old friends, David and Margaret. You would have thought that the atmosphere was quite different in the morning and afternoon - one subdued and the other up-beat.

However not so. 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. One of us commented that she'd learned humility and patience; another that he'd learned impatience! I think we might have thinking about the same phenomenon: we've been discovering how impatient we are. I'm lucky as I'm the only one whose upper motor neurone disorder has so far left my hands and arms intact. But even that leaves me frustrated.

One of us talked about the dark times he experienced on occasions, but also of the enjoyment he derived from friends' visits. We could all identify with that. John and Jean's house was buzzing for two and a half hours, full of conversation and full of life - and in our corner with a lot of laughter.

So it wasn't all that different from the 40th wedding anniversary party on our friends' farm. Their best man and four bridesmaids were all there. Friends had come from both ends of the country. The marquee buzzed with conversation; the groom's speech was jokey and serious. And of course the food was excellent.

Life is for celebrating, not for moaning about. There's a very positive article by Geoff Morris, who has MS which you can read on line, about the depressing Terry Pratchett programme due to be shown tomorrow evening. I think he has seen a preview and knows what he's talking about. He describes it as a Saccharine picture of suicide. It raises the very real issue of whether the film encourages suicide - which is of course against the law, against the royal law of love, and against life which should be cherished as the most precious of gifts. And of course it raises the questions of what the BBC is up to showing it, and when it will show the opposite as a balance.