Hazel McHaffie

altruism

Youthful altruism

The month of May has highlighted for me the amazing and heartwarming altruism of many people.

We’ve surely all been hugely impressed by the story of charismatic teenager, Stephen Sutton, using the limited time left to him to raise money for the Teenage Cancer Trust. Right up to his death he didn’t waste energy or time feeling sorry for himself but ‘felt privileged’ to be in a position to raise the profile of his disease (colo-rectal cancer) and do what he could to help move scientists closer to an effective treatment. Inspirational lad.

But for every exceptional headline-making person like Stephen there are countless others beavering away in their own quiet corner, doing their bit for mankind. And this weekend I witnessed a beautiful example of this.

The Edinburgh Marathon Festival was held over Saturday and Sunday here in Scotland’s majestic capital city; three of my own grandchildren (as well as my son and son-in-law) were running in it. And I was amazed at the sheer number of little tackers jumping about at the starting lines sporting tee-shirts emblazoned with logos for a variety of charities – connected with everything from meningitis and arthritis in children, to research into cancer and Alzheimer’s. They’d made the effort to raise sponsorship money; in so doing they’d simultaneously raised the profile of many different needs. And then their little legs pounded along the track to justify the support they’d acquired.

My grandson in the 5K

Granddaughter in her charity tee-shirtThe MC gave all these altruistic youngsters a special endorsement, as do I. Millions of pounds are raised in such ways but equally important, what a terrific attitude to inculcate into growing minds.They are helping to make the world a better place in more ways than one. I salute them all.

3 grandchildren wearing medals

 

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Permanent present tense

Peppers TheatrePhew! It’s baking hot in the Peppers Theatre at lunchtime today. Ladies discreetly fan themselves with their tickets; jackets, jumpers, over-blouses are discarded. Loud thumping music reverberates through the tent for the first 20 minutes. It’s dim, the speaker is using slides, the chairman is very wordy. It’s like a how-not-to manual!

But neuroscientist Professor Suzanne Corkin, seems unfazed. When she was 27 she met a remarkable man and she remained ‘his friend’ for 46 years until his death. She’s here to tell his story; recounted in Permanent Present Tense.

Henry Molaison was 10 when he began to have petit mal attacks, 15 when generalised convulsions began. They became both debilitating and socially damaging, so in the 1950s he underwent an experimental psycho-surgical procedure. For him, the result of years of strong anti-convulsants, followed by the removal of parts of his brain, was disastrous: he lost the ability to form new memories for the rest of his life. Pause for a moment … What would that be like? … Never remembering anything. But Molaison’s catastrophe proved to be a gift to humanity, because studying him facilitated a revolution in the neuroscience of memory. As he put it himself: ‘What is found out about me helps you to help others.

The professor plays a tape of his voice as if to get us closer to the man himself, and then outlines some of the tests she and her team did on him: counting backwards in threes, recalling letters, remembering stories, reproducing drawings, matching words to definitions (oh, simple everyday words like hagira, anchorite, egress, manumit, welkin, minatory, quotidian), identifying celebrities and why they were famous (eg Julie Andrews, Lee Harvey Oswald, John F Kennedy, Ray Charles, Woody Allen, Liza Minelli, Mikhail Gorbachev). Yoiks, I’d have been struggling with some of these tests! HM (as he was known), proved a dab hand at mirror-tracing, but on most exercises he showed a complete inability to convert short term memory into long term.

And yet what shines through is the warm friendship Corkin had for her patient. He was, she says, a gentle soul, intelligent, friendly, altruistic, and witty. As he said spontaneously once: ‘It’s a funny thing, you just live and learn. I’m living and you’re learning.’

A year after his death, in line with his consent, his brain was sliced into 2,401 slices each the thickness of a hair. Ongoing invaluable material for the scientists. What a legacy.

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Enough to warm the cockles

Back to work this week and finding plenty to warm the cockles of the heart. A quick share of the most pertinent before I get back to the big edit.

This handwritten sign appeared in a list of 21 pictures ‘to restore your faith in humanity‘:

During business hours the books on this porch are 50 cents. When the store is closed, please feel free to borrow them or keep them and pay me later. ANYTIME: IF YOU DON’T HAVE MONEY TO BUY BOOKS AND NEED OR WANT TO READ HELP YOURSELF. Donations accepted. 

Brilliant, huh?

And then there was the news that for the first time ever women have won all five Costa Book Awards.

And the statistics that show that people are buying more books in total thanks to aggressive marketing and the rise of e-books. All very salient points for me in my current deliberations.

Then there’s the tantalising pile of books I acquired myself this Christmas. IMG_8620

Who needs resolutions to feel positive at the start of 2013?

So, after a good wholesome break and lots of socialising, I’ve  returned to the isolation of my study, and to the current novel, with renewed enthusiasm and commitment. And a fresh eye. Exactly what was needed. The red pen is in overdrive.

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Over My Dead Body

Amidst all the hurly burly of summer I’ve been trying this week to get back to the subject of organ donation and my current novel, provisionally called Over My Dead Body. Much of what I do – writing, reading, thinking, re-writing – is rather mundane and not worth reporting, but two events might interest you.

On Thursday morning Radio 4’s Inside the Ethics Committee discussed the case of an 82-year old woman who wanted to donate her kidney to a stranger: an altruistic donation. Wowwa! Steady on! Wait a minute! Would I want a rather ancient used organ myself? Worse, would I want my daughter, my granddaughter even, to get it? As a health care professional, would I say to this sparky little lady, ‘Yes, by all means; go ahead, that’s fine. Good on you.’? And should my squeamishness be allowed to trump her honourable and unselfish intentions?

It was fascinating stuff, made more challenging by my trying to answer all Joan Bakewell‘s questions to the panel of experts before they did.

This sprightly and indomitable octagenarian – Pamela, not Joan Bakewell! – had nursed her severely disabled husband for years until his death, and she’d found kidney failure a particularly distressing phase to contend with. Her husband wasn’t strong enough to have a transplant, but Pamela was determined to personally spare someone else the trauma of dialysis. At first the doctors were reluctant, but against opposition, she persisted. The medical team eventually agreed to test her fitness, and in the end she did indeed donate. And the recipient, still in his fifties, was hugely and tearfully grateful.

The panel explored issues such as: Should an 80-year old kidney go to an 18 year old patient? Should necessarily tight regulations and procedures sometimes be waived in exceptional circumstances? Should people be allowed to take big risks with their own lives? Should a doctor’s moral qualms be allowed to influence decisions? And I found the specific case really helped to concentrate the mind.

Then yesterday off I went to meet the manager of a team of staff who actually work in the business of organ transplantation in real life. And this time I got to ask the questions. As the novel I’m writing evolves, questions present and I keep a tally of the points I need to research. Sometimes the internet provides the answers, sometimes scientific papers. But there’s something really special about talking with folk at the coalface who actually do these things for real.

Boy, was I glad I’d contacted this particular expert. I learned so much, and came away with invaluable information, and additional documentation that will give me even more insights. Documents about transplantationSo, now it’s back to the draft of Over My Dead Body to correct the things that simply wouldn’t ring true in modern practice. Most of it involves minor tweaks, but one strong message I got as I listened is that there’s a deliberately wide gulf between those who deal with the donor’s side of the transplants, and those who focus on the recipients’ side. I knew, of course, that the transplant team were kept away from the donor family so as not to influence decision making, but I didn’t realise the separation is much much wider than that. I was impressed by all the rigour and safeguarding. And I now have to split my fictional medical team more decisively into two.

As always, I’m left greatly indebted to experts who authenticate my stories. And on this occasion, with an additional sense of gratitude that there are such compassionate and sensitive people out there to steer families through the greatest tragedy of their lives, and help to bring something positive out of it.

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Quo Vadis?

Promotion of my most recent novel goes on. The ESRC Genomics Policy and Research Forum arranged a session in Waterstones bookshop on Tuesday this week, where I was in conversation with Dr Shawn Harmon, a lawyer and research fellow at Edinburgh University.

in conversationThe Forum’s Director said: “As life sciences develop, novel medical approaches to treating disease – including the role of so called ‘saviour siblings’ – are becoming increasingly viable. However, these potentially bring with them significant ethical issues, and also raise questions about how we regulate the practitioners applying such technologies.” Indeed. They are keen to facilitate discussion about these issues – just as I am – so they’ve been running a programme of ‘Social Sessions’ allowing the public to debate with writers. My event was the latest in this series.

We used my fictional characters to bring the topic alive, and to my relief, Shawn wasn’t nearly as intimidating as his weighty CV would suggest. Phew! Great venue, lively audience, good wine (strictly for after the event in my case!), and thought-provoking issues. But you’d need to ask the audience for a dispassionate opinion – the person quivering in the author’s chair has a decidedly one-sided perspective. And my reaction is always the same: I can think of a much cleverer and more coherent answer the following day! Somehow in the hot seat the grey cells aren’t quite as lively, nor the tongue as eloquent. Hey ho. There’s a video of the interview posted by the Forum on Youtube if you’re interested.

OK, so Saving Sebastian is safely out there, but whither next? At this precise moment I could do with a fairy godmother to wave a wand and show me the future. Or a clairvoyant to tell me the consequences of decisions at this stage.

Because ‘the world of books is undergoing its most dramatic change since Gutenberg printed his 42-line bible in Mainz in 1455,‘ as Andrew Franklin, founder and managing director of Profile Books, said in his inaugural address as visiting professor at City University. Book prices are falling, physical books sales are diminishing, globalisation and technological change make it increasingly difficult for non-celebrity authors to find a profitable niche. ‘The rich get richer and everyone else suffers.’

Now, money is not my driving force. I want to write; I still have things to say. I’ve now published seven novels with established publishers. So where do I go with novel number 8?

Self-publishing? Franklin’s take on this is: ‘For a tiny number of writers this works, but then for a tiny number of players the lottery works too.‘ Ouch.

Digital books? The Society of Authors has actively encouraged this route. But will it require shameless self-promotion (yuck!) and rock-bottom pricing to become visible in this huge mountain of unregulated publications, where spam, plagiarism and computer-generated books lurk amidst the results of honest toil and careful scholarship? Would my own little offering simply sink without trace?

Open Access? From this safe distance I can sincerely applaud the democratic principle of free-to-the-reader books. But nothing is really free. Who exactly is paying the price for this principle? Would it be me? Or worse, would I be harming other writers struggling to make ends meet whose books are in competition with the free ones? And anyway, is it simply vanity publishing cloaked in a respectable altruistic disguise?

Franklin’s conclusion is double-edged: ‘Sadly, the book world is becoming a free market winner-takes-all world where success is over-rewarded and there is only tough love for the rest. This is a time of change rather than the End of Days. The publishing industry constantly reinvents itself and we are on the cusp of one of those revolutions. On the barricades, some comrades may be lost – authorship as a profitable profession may not be recognisable in its present form of author, computer and desk. After all, the invention of the printing press ended the specialised, highly skilled and utterly beautiful art of manuscript illuminations.’

Question is, would I be one of those conrades lost on the barricades? Which is where my friendly neighbourhood fairy godmother and clairvoyant come in.

 

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Warrington travesty

When our railings and gates were stolen eighteen months ago I found it hard to understand the mentality of people who would capitalise on others’ misfortune. Ruined railings Since then I’ve listened and watched with a growing sense of incredulity, a catalogue of sorry tales involving similar opportunistic or planned crimes, some involving personal injury as well as loss to the innocent victims. Apparently, according to this week’s figures, there are now 1000 metal thefts a week, costing the economy £770 million a year. Birmingham alone had 950 drain covers stolen in just six months last year. One church elsewhere has had its lead stolen seven times! Staggering statistics.

But surely revulsion plumbed new depths with the incident in Warrington earlier this month. It involved a plaque worth a mere £30 to scrap dealers. But this was not just any old strip of bronze; it commemorated the life and death of two young boys – 12 year old Tim Parry and Johnathan Ball, who was only 3 – innocent victims caught up in an IRA bomb blast in 1993. What kind of a mentality sinks this low?

The names of children killed in brutal circumstances remain in the memory, don’t they? Damilola Taylor, Stephen Lawrence, Sarah Payne, Baby P, James Bulger, to name but a few. And where the parents respond to the event with selflessness and generosity, devoting their lives to bringing some good out of their tragedy, these memories are kept fresh and vital.

Instead of spending the rest of their days railing against the perpetrators of a crime that robbed them of their beloved son,Tim’s parents, Colin and Wendy Parry, became active in the peace process in Northern Ireland, vigorously campaigning for an end to the hostilities and divisions that had torn that community apart for so long.The community too, reacted positively by setting up The Tim Parry and Johnathan Ball Foundation for Peace which works nationally with people affected by conflict and violence.

Now it feels as if the thugs who desecrated this memorial are thumbing their noses at the Parry’s altruism. Not surprisingly there has been a national outpouring of sympathy and outrage which Warrington describes as ‘overwhelming’. The plaque will be replaced. Donations are still flooding in to the Foundation.

What’s more, the chief executive has appealed for everyone to follow the Parry’s example in ‘taking a positive approach to managing conflict, rather than engaging in any negative actions as a result of this incident.’

What a fine example of forgiveness and generosity of spirit. One can only hope that at least some metal thieves somewhere will be chastened and shamed into reforming their ways.

 

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The kindness of strangers

After last week’s blog kindness has been very much in my mind. So today’s topic is a kind of extension of that thinking.

I want to start with a topical challenge for you: Would you voluntarily donate a kidney to a complete stranger? Think carefully about that before you read on. Would you?

My current book is about organ transplantation so this issue has been an onging preoccupation for me for most of this year. But it’s topical right now because a new charity has just been launched (on 1st of this month) called Give a Kidney – One’s Enough. Explicit enough, huh? But just in case there’s a lingering suspicion – it aims to raise awareness of live-kidney donation. The altruistic kind. Two of the charity’s steering group are themselves donors: Brian Burns-Cox, a physician, and Annabel Ferriman, a medical journalist. The others are professionals working in the field of kidney transplant. So it comes with excellent credentials.

During the past four years since legislation was changed to allow living donations to non-relatives, almost 90 people have come forward to do so. Humbling and inspiring, isn’t it? I mean, you can understand somebody doing it for a loved one, but for a complete stranger?

Would I? Hmmm.

Would you?

And yet these donations transform lives. And that’s the motivation of this small band of amazing people. They know the burden of dialysis – a burden carried by 6,500 people right now. And that untreated, 300 will die every year if they don’t receive a kidney.  And they care enough to go through surgery and bear the potential consequences.

They deserve our sincere gratitude and admiration. Far, far more, in my opinion, that the sportspeople or pop stars who are constantly lauded in the media and who ‘win’ knighthoods and OBEs.

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Donating organs

I am feeling both humbled and privileged. But let’s go back to the beginning …

On an icily cold morning in February 2008, Martin was diverted on his way to work because of an accident on his usual route. He called his wife, Mary, and asked her to ring their son, Paudraig, on his mobile phone. There was no answer.Paudraig

This was a tight-knit Irish community and word travelled fast. The owner of the house at the scene of the accident knew exactly whose car it was. First to arrive were local nurses on their way to work – they knew the driver. Paudraig had skidded on an icy bend in the road and slammed into concrete. By the time his parents arrived at the hospital this vibrant, much-loved lad, aged just 21, was wired up to machinery. And the medical predictions were bleak.

It’s almost too painful to try to imagine their emotions. And yet … they found the courage to do two things very swiftly: they offered his organs for transplantation; and they requested that all his friends and family be given time and opportunity to come in to see him while he was still alive. Both gestures had a profound effect on many lives.

Recently, in the course of research for my current novel, I had the privilege of talking to Mary, hearing her story, listening to the reasons why they did as they did. A more altruistic and generous family it would be hard to find. Paudraig's drawingAnd as if that were not enough, a package subsequently arrived in the post for me: photos of Paudraig; copies of letters recounting the progress of the organ recipients and their heartfelt thanks; The Northern Ireland Transplant Association leaflets telling Paudraig’s story and appealing for donors; poems and tributes and … incredibly … three pen-and-ink drawings by this hugely talented artist, Paudraig. All unsolicited. Sent to a complete stranger. Treasures beyond price.

If anyone can move the public to sign up to donating their organs, it has to be families like this. In the midst of one of the worst kinds of pain known to man, they yet think of others. They see hope coming out of tragedy, and they are comforted that even in death, their loved ones can reach out to help the needy.

What a legacy.

And all unexpectedly I have fallen inside the orbit of this family’s embrace. Awed and indebted beyond words.

If you have been affected by Paudraig’s story, why not visit www.uktransplant.org.uk today? And remember … do talk to your nearest and dearest about your intentions. A conversation today could save many lives tomorrow.

*Pictures reproduced by kind permission of Paudraig’s family

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