altruism
Wigtown Book Festival 2021
Here I am again like a pig in muck! Another book festival; another opportunity to attend online; hours spent listening to writers talking about their writing. What’s not to love?
And because I’ve visited Wigtown (Scotland’s National Book Town), walked its streets, and met some of its characters, I feel to actually be there. Even the photos that precede each session take me to the independent bookshops and immerse me in the atmosphere of the place.
This year a particular bonus has been topics very dear to my heart: death and dying, altruism, ethics, equality.
Salena Godden is one of the foremost performance poets in the UK, but on this occasion she was promoting her first novel, Mrs Death Misses Death, and wow! did she promote it! I’m not normally a huge fan of readings, but in this case the three short readings she did were a major selling point. The writing is lyrical in the best sense of the word, and only enhanced by Godden’s expressive voice and pacing. What’s more, she herself came across as deeply sensitive to the nuances of death and grief. Her own father took his life when she was only a young child, and she has recently lost someone dear to her to Covid 19. She was also unafraid to show her emotion in response to a question about closure from a widow in the audience who has had to leave her husband’s ashes on the other side of the world following his sudden unexpected death. The book is fiction, but explores grief and mourning, invisible missing women, and the relationship the living have with the dead. In the story, Mrs Death takes the form of a black, working class, shape-shifting woman, and she forms an alliance with Wolf, a young, bisexual, living writer well acquainted with death. Together they debate and document experiences and consequences and the meaning of death. The book gives breathing space for the reader to be part of the story too, and Godden has left six blank pages at the end for anyone to add photos or names or tributes to those they have personally loved and lost. She wants these books to be shared and inherited and passed on, to keep those names alive – much as she wants the names of those lost to Covid to be remembered and respected as individuals mourned by family and friends, not as stark numerical statistics. It’s inspired.
Larissa MacFarquhar was in New York but spoke to a live audience in Wigtown eloquently and with real feeling. Her book, Strangers Drowning: Impossible Idealism, Drastic Choices, and the Urge to Help, is about people who live morally-driven lives from choice, people with an extraordinary sense of duty and decency, people MacFarquhar found ‘unquestionably admirable’, who would challenge readers to think about their own attitudes and responses. The people she studied might be loosely described as ‘do-gooders’ (although she conceded that term tends to have a certain kind of stigma attached to it). The stories she shared included altruistic organ donors, an Indian aristocratic lawyer who founded a leper colony on the basis of a fellowship of suffering; a woman who fostered twenty children with special needs; a young couple who struggled with the question of how right/wrong it would be to have a child and spend money on them at the expense of the lives of many many children in underprivileged families; a man who made it his mission to save chickens. In the book she confronts wider issues, such as the conflict beneath how far a person is prepared to go at the expense of their families; how much we may devalue the quiet smaller efforts of those who work with small numbers or build on the work of others as opposed to the titans and entrepreneurs who blaze new trails. It was a fantastic session. And yes, immensely challenging.
Jill Hopper‘s book, The Mahogany Pod, is a memoir about her experience of falling in love in her twenties with a dying man and deciding not to walk away. Now around 50 and herself the mother of a teenage son, she felt ready, after 25 years, to analyse and probe and make sense of what happened to her young self, and in so doing to lay certain things to rest, to stop worrying about forgetting the detail, and to make peace with Arif’s mother. It’s a tender account of what it means to live and love fully in exceptional circumstances, and the changing quality of the grief that follows great loss, and which put her at odds with her peers. It’s surely a tribute to her present husband that he encouraged and supported her in this endeavour. The title comes from the only tangible gift from Arif she was left with once his family had removed everything of his after his death. It’s the distinctive pod of a tree which he picked up in his travels in Zimbabwe, but which is actually native to South America, and the misperception about its origins is symbolic of a number of things which were misunderstood or reinvented in their relationship. Hopper has a lovely gentle manner of speaking and the hour zipped by. Another superb event.
I feel so fortunate to have been able to attend this marvellous festival this week. And a big shout out for the amazing interviewers who were thoroughly well prepared and asked all the right questions. With a couple more sessions booked and still to come I might well be sharing more with you next Thursday too!
Volunteering … or not
Heroism, self sacrifice, commitment … 2020 highlighted the best in people, didn’t it? Inspirational stories of ordinary folk doing extraordinary things for love of their fellow man. Making a difference. Altruism was very much alive and well.
So why, oh why, were so many generous offers greeted with lukewarm responses and endless obstacles from officialdom? I’ve lost count of the stories of frustration on the part of those who wanted to give their time and expertise in the cause. No response, excessive bureaucracy, endless form-filling, wasted talent. My own experience was no different, so I totally sympathise. And we’re seeing it again, even now, when the situation here in the UK is worse than it’s ever been, the real-life statistics like those of some horror story … thousands of highly-motivated experienced medical professionals, newly retired, wanting to help with the vaccination campaign, but being required to complete umpteen forms, undertake irrelevant courses, submit to multiple layers of scrutiny, put off by absurd caveats. Ordinary, completely unskilled relatives are given crash courses in wielding medical syringes when the need arises, you know!! They aren’t sent off to do five on-line courses!
Is it fear of litigation, suspicion of intent, lack of knowledge, or sheer administrative incompetence? I know not. But it’s certainly no way to foster goodwill and community spirit, that’s for sure. Nor is it helping to deliver the promised way out of this ghastly pandemic. And I know for certain some volunteers have given up the unequal struggle and sunk back into retirement, disillusioned and unfulfilled. OK, rant over.
Of course, in the total scheme of things it’s a small gripe. You only need to see pictures of starving women holding newborn babies in war-torn Yemen, or exhausted health care workers in tears in our overstretched Intensive Care Units, or the battered and bleeding face of an abused woman running down the street clutching her terrified children, to see there are bigger battles to be fought. But in my enforced isolation, faced with yet another unnecessary form to fill in online, this one is currently raising my blood pressure and focusing my reaction to so much that’s been badly handled in this public health crisis.
And please don’t point me in the direction of the bunch of folk (note restraint!) who deny the very existence of COVID19. My answer to them is:
We have just the job for you at least! Ideal. Tailor made. Transporting patients, attending to their personal toileting, disposing of their waste, cleaning their surfaces, carrying out the dead. In a COVID ward.
You’ll save the NHS a fortune in PPE because you won’t need it; you don’t believe it’s necessary. You won’t need any counselling or stress management or time off isolating. You’d be perfect for purpose.
Thank you, yes. How soon can you start?
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.
The 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.
Permanent present tense
Phew! 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.
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.
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.
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. So, 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.
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.
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.
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. And 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