It’s five years now since my novel Right to Die was published. In the run up to publication day I fretted when news stories related to this issue appeared. Would they steal my thunder and make it look as if I was jumping on someone else’s bandwagon?
How absurd. Here we are in 2013 and the subject continues to grab the attention of reporters and the public. Only this week the case of Paul Lamb, a 57-year-old man who’s been paralysed for the past 23 years after a road accident, hit the headlines. He’s taken up the campaign (initiated by Tony Nicklinson and discussed here) to legalise assisted death. He too is unable to do the act himself but wants any doctor who helps him to be immune from prosecution.This issue isn’t going away any time soon and Right to Die is as relevant today as it was in 2008.
Whenever and wherever one contemplates slow deterioration and indignity, pain and suffering, the prospect is horrific. It doesn’t take much imagination to see why a swift end to it all might seem preferable. How to live through the process and achieve a good death is the question.
But speaking of death, I was hugely impressed by best selling novelist Iain Banks‘ recent wry announcement about his own impending demise. As he stated on his website: ‘I am officially Very Poorly.’ He is. He has inoperable gall bladder cancer with numerous secondaries and doesn’t expect to live beyond a few months. His current novel will be his last and his publishers are rushing it through to give him a sporting chance of seeing it hit the shelves. He adds with the sort of ghoulish humour which is helping him deal with this tough situation, ‘I’ve asked my partner Adele if she will do me the honour of becoming my widow.’ The style and language of a brave man and a truly accomplished writer.
My own mark will be infinitessimal compared with his but I still worry about the impact of my books and the timing of their publication: the subjects I deal with do have their moment in the headlights. I couldn’t believe it when last week the press picked up on the fact that organ donation rates had risen significantly. and splashed it everywhere in capital letters. And blow me, the topic even came up in fiction in BBC1′s medical drama Holby City, with the death of a young doctor during brain surgery. She’d requested her organs be used and there was a dispute in the family. Hey, that should all have come after Over My Dead Body was published, not while it’s in the starting blocks!
But supply is still falling way below demand when it comes to human organs so all is not lost yet. Indeed, I doubt it will ever be too late to publish a book about transplantation in my life time.
Last summer I wrote a piece about teenager, Hannah Jones, and my brother, Rob – both of whom made difficult choices in relation to treatment for cancer. Hannah declined a transplant, Rob accepted.
This week I’ve been in touch with both. Rob I saw in the flesh at a family wedding. Hannah’s Mum, Kirsty, contacted me through my blog – what an unexpected and delightful surprise. And subsequently Hannah herself emailed, and we’ve started up a lovely conversation. I was impressed all over again, not only by their courage, but the generosity of spirit they show in sharing their stories. Happily both are still alive and a vital part of loving families. But Hannah is feeling rather poorly at the moment so loads of good wishes are winging their way to her.
It’s Valentine’s day today and all this week STV is supporting the nationwide From the Heart campaign, which aims to raise awareness of organ donation. As you know, my current novel, Over My Dead Body, is about this very issue, so my antennae are out there quivering like crazy.
The focus of the campaign is twofold: to encourage viewers to join the organ donor register, and to talk to their loved ones about their wishes. The blurb says that there are ‘currently around 10,000 people in the UK who need a transplant and a thousand of them die waiting every year. Yet only 31% of people have registered as donors – a much lower proportion than some other countries around the world.‘ And apparently, 45% of families say no to donation because they don’t know what their loved one would have wanted. That’s a quite shocking statistic in these days of easy communication, isn’t it?
I like the timing. In Valentine’s week, whatever the state of their own love life, everybody has the opportunity to give a gift that could potentially save or transform the lives of others. And talk to their nearest and dearest.
I spend time each month with people whose memories are not what they once were. And – dare I admit it? – I’m increasingly conscious that mine is more selective than it used to be. So my ears pricked when this week Baroness Joan Bakewell made a comment about her difficulty remembering characters in a book. Writing in The Telegraph she observed that it’s easier to turn back and check the plot and who’s who in a ‘real’ book than with a Kindle. I agree in part, although of course, in reality it’s perfectly easy to bookmark a page and search for keywords with the electronic version.
I’d also add that there are occasions when I can’t remember why I’m reading a particular book in the first place – a flick to the back cover of a paperback will tell me; it requires more effort on the Kindle.
Joan Bakewell’s comments generated a small flurry of responses, and one from Bedfordshire suggested that all books should list the characters with a brief note on each. I did once include a family tree in one of my own novels (Remember Remember – which incidentally is about dementia), although my editor didn’t think it was necessary. I’m devoutly wishing the novel I’m reading right now had just such a dramatis personae. I’m having to concentrate hard to make the connections in what is a subtle plot with lots of characters (too many beginning with ‘A’: Anselm, Augustine, Agnes, Arthur, Andrew, Aubret, Anton, Armstrong, Adolf), false trails, and a lot of zipping to and fro between the generations. And what’s more several people not who they say, or even think they are. I mean, is it any wonder I’m confused?
It’s The Sixth Lamentation by William Brodrick which I bought on a strong recommendation from a friend who’s read it several times. Actually if I’m honest I don’t think my difficulty is as much to do with Brodick, as to do with my juggling too many balls at the moment, which means my attention is only partially on the story that I’m reading in odd snatched moments.
Domestic crises and extra responsibilities have been vying with professional demands lately. But this week I’ve made a concerted effort to methodically tick off deadlines. So what have I accomplished? I’ve sent off the usual synopsis and first three chapters for Over My Dead Body to a potential agent; Double Trouble has gone to a film production company who’ve expressed interest in making it into a feature film; I’ve had encouraging conversations with a possible funding body to enable this to happen; and all my various blogs are up to date. Phew. A week in the life of a lowly jobbing writer.
I’m realistic – nothing may come of any of these developments, but at least my report card will read ‘Hazel demonstrates dogged persistence and works hard‘.
Maybe in two weeks’ time when my current overload is a thing of the past (now there’s a triumph of hope over experience, if ever I heard one), I can return to The Sixth Lamentation with renewed enthusiasm and perhaps this time do it justice. See, that’s where that dramatis personae would be a real boon. I’d have a head start.
I’ve now returned to my usual invisible self, my stint as official blogger for Genotype over, my press pass archived.
Two sessions to share with you this time. Friday morning was close to my own current preoccupations. How much responsibility should parents take for their children? How far would you be prepared to go to protect those you love? And when is it right to sacrifice the interests of an individual for the greater good?
Two books were under discussion: The Donor, by Australian Helen Fitzgerald, formerly a criminal justice social worker, working with rapists, murderers and psychopaths, (gives her a head start, huh?) and The Dinner, by Dutch TV and radio producer, actor and writer, Herman Koch. Both dark books with largely unsympathetic, unlikeable characters. Hmm. Do I like unlikeable characters?
Fitzgerald’s novel, The Donor, is billed as a ‘tense thriller’ – genres are rather elusive labels at times and I’d say this was a loose categorisation. It’s about single father, Will Marion, a passive, unproductive man whom one of his girls describes as ‘a rubbish dad‘. His teenage twin daughters are polar opposites, but both have inherited a kidney condition, which means they both need a transplant. Will has two perfectly functioning kidneys. What should he do? Naturally, given my need to read any novel on transplantation, I’ve got this one, but it wasn’t the sentimental tearjerker I was expecting. It’s set in a world of drugs and violence, crime and punishment, dysfunctional families and misplaced loyalties. ‘Gritty’ is my summary.
The Dinner deals with the sombre undercurrents that lie beneath middle-class respectability. Two very different brothers – one a teacher, the other a high-ranking cabinet minister a whisper away from becoming prime minister of the Netherlands – and their wives, are in a smart restaurant, exchanging polite but banal conversation. But behind the empty words lurks an horrific secret: their fifteen-year-old sons were together accountable for an act of terrible brutality. They weren’t identified at the scene of the crime so will the parents report them to the police, or will they protect their own reputation and careers? The actions of any one of them could affect them all.
Both authors talked about the triggers to their stories, their use of humour, how they balanced the story line with the issues – all issues relevant to me. I could usefully compare and contrast their decisions with my own. They too challenge the reader to ask, What would I do in such circumstances?
The Monday session was much further outside my comfort zone: Letting the Genome out of the Bottle. Genomics – essentially the study of all the genes of a cell or tissue at the DNA level – is a relatively new field of enquiry which has raised huge questions for society, and the knowledge it provides has widespread consequences for individuals, for families and for society.
The author, Lone Frank is an internationally acclaimed Danish science writer with a PhD in neurobiology. Mercifully I’d read her book, My Beautiful Genome: Exposing our Genetic Future One Quirk at a Time, so I wasn’t completely lost during her talk, even though the sound effect of rain thundering down on the roof of the tent was rather distracting, and I was still suffering from motion sickness after almost 1000 miles on the road over the weekend.
Consumer genetics has been ‘portrayed as a panacea for the plague of diseases, a cornucopia of health and prevention – with the Holy Grail being the advent of personalized medicine, tailor-made for your individual genes.’ Frank was clear: illness is indeed an important aspect of genetics, but it’s only part of the picture. Clarity is something she aims for. And accessibility. She manages to make a complex subject engaging by taking us on her personal journey of genetic discovery. She became a research subject – no easy task given the family history of depression, mental illness, alcohol problems, breast cancer – unravelling the Lone Frank genome with all its strengths and vulnerabilities. She shares the accumulating secrets with her readers. Then, having reeled us in, she broadens the issues through discussions with an impressive array of scientists from around the world. A clever tactic.
The end result is a book that’s at once engaging, informative and intriguing. How about this for a withering aside to a pompous boss: ‘Whether you are a flu virus, a slime mold, a manatee, or a manager, your genetic code contains the same components‘? Or this to prick an over-inflated ego: ‘human beings share ninety-eight percent of their genome with a screeching chimpanzee, sixty percent with a skittering mouse, and even twenty percent with a lowly roundworm a millimetre long‘? Brilliant!
And her honesty means she doesn’t shirk the difficult questions about the consequences of biological fortune-telling. There were times when I felt decidedly genetically challenged, but I scribbled furiously, and came away with a rather reassuring picture. Consumer genetics isn’t about checking your genes for a diagnosis of specific diseases like diabetes, cardiovascular illnesses, or Alzheimer’s. Rather it’s a risk assessment; a collection of indicators that compare your chances of getting a disease against the same risk in the general population. And if you’re fearful of knowing about your genetic underpinnings, remember ‘None of us are free of mutations and genetic weaknesses – the flawless genome does not exist.’ Knowing what these weaknesses are could potentially empower us to protect ourselves from developing those illnesses to which we are susceptible. But analysis of our genes will only take us so far. Exactly what tactics to adopt requires understanding of what turns the genes on and off – the new science of epigenetics to which attention is now turning. So we aren’t there yet. And secretly at times I was wondering if we were any further forward than the days when we simply looked to our parents and grandparents to see what we had potentially inherited.
There are though, many, many other issues to consider in this more scientific approach: privacy, questions of intellectual property, the consequences to relatives, the implications for prospective parents wanting to minimize genetic disadvantage in their children, commercial pressures, the implications for employers using these tests as part of a selection process, DIY genetic testing, surreptitious testing of celebrities, paternity testing, genetic dating … I was left reeling. There were clearly some experts in the audience – they challenged Frank to tighten up her language and thinking. No dumbing down for the uninitiated here!
But the last word has to go to Lone Frank. It was she who put herself in the firing line, exposing her own vulnerabilities for all to see, she who wrote this fascinating book, after all. Her conclusion is that her genome is ‘not a straitjacket but a soft sweater to fill and shape, to snuggle up and stretch out in … it is information that can grant me greater freedom to shape my life and my essence.‘ How comforting is that?
So, the Book Festival is over for another year. And for me it’s been one of the most enjoyable yet. Hats off to all those people who make it possible.
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.
Good news to report this week.
My latest novel, Saving Sebastian, is now available in Kindle form. Wahey! Within weeks of its publication in paperback form too, and entirely down to my publisher, no effort on my part. Way to go!And my new improved website is now live, looking fresh and bright. The folk at Creative Infusion were busy transferring it as I tanked down to the Westcountry. I’m indebted to Keren and Tim for their work on this. And to Ben, my personal technical guru.
I hope you like the changes. Do have a wander through the pages and if you encounter any glitches, or have suggestions for improvements, let me know. It’s for you (at the moment I still know who I am and what I’m up to!), so I want it to meet your requirements.
Travelling at Easter time can be horrendous but we managed to avoid the worst mayhem on the M5 and to enjoy the fabulous scenery of the lesser roads and the gorgeous sunsets on our way.
As I’ve said before, writing often takes a back seat when I’m away, but this weekend I actually managed to use travelling time effectively to develop that additional elusive story line for the current novel – I’ve been furiously scribbling in notebooks to capture the thoughts before they are lost forever.
Oh, and I managed to slot in reading two more novellas about organ transplantation. Odd how many short stories I’ve found on this subject (most I have to admit, not well written). Is it a feature of the subject appealing to writers, or the ease of downloading electronic books, I wonder?
Waiting for me on my return was a comment from a lady who’d just read three of my novels, saying that the ending of Double Trouble was just too heartbreaking. It is too. I’ve wept over it many times myself – and I know what happens! I tried my best to change it but the characters just wouldn’t let me. I saw the tragedy happen; I had to record it faithfully. At the time when I sent it out to a raft of critics for comment before submitting it to the publisher, one of them (a professor of medical ethics) said it took him a week to recover enough to talk to me about it. But what these reactions tell me is that these readers really cared about the characters – enough to be upset; and I like to think that means I’m doing that part of my job effectively at least. Feel free to disabuse me of this notion if you consider I’m deluding myself.
Well, it’s here! 2011. And a very happy New Year to you all.
The bells rang, the pipes skirled, 80,000 people partied in the streets of Edinburgh to the thunder and shimmer of thousands of pounds worth of fireworks … and yes, it is worth saying, because the official celebrations have been cancelled before, and the jolly old weather certainly threatened to be agin us this time.
Six years ago we took a party of guests to our usual vantage point shortly before midnight and … waited … and waited … and well, nothing happened. Apparently there were ‘safety concerns’. In our embarrassment and frustration we instantly thought Thou-shalt-not-play-conkers-without-safety-helmet-plus-padded-gloves-plus-visors writ large. But nobody wants a fatality for the sake of a mere pyrotechnical spectacular, and we learned later it was something to do with a dodgy roof and the strength of the wind. At least that was the official version.
But it’s not just dynamite that has ignited the change to a new year. The bells have been ringing for other major shifts close to my heart. Indeed the news during this past seven days has been jammed full of my kind of subjects. In no particular order (as they say on ‘talent’ shows) …
Organ donation included on driving licence applications
From July drivers applying for a licence will be asked to indicate which of the following applies to them:
• Yes, I would like to register on the NHS Organ Donor Register
• I do not want to answer this question now
• I am already registered on the NHS Organ Donor Register.
It’s an official step towards increasing the pool of donors. Around 90% of people favour donation but only 27% are registered donors. And given that about 1,000 Britons die each year for want of an organ, and thousands more wait an indecently long time for one, we need to do something. Maybe there should have been one more question:
• Would you be prepared to receive a donated organ for yourself or someone you love?
The novel I’m writing just now is about organ donation so I can get quite fired up on the subject.
Sir Elton John has become a dad
Put aside for a moment any qualms about the 63-year old temper-tantrum-on-short-legs with a £290,000 flower habit as a role model, and disregard the rumours about payment to ensure the birth happened on 25th December as the ultimate Christmas present, and think instead of the whole picture of a financial arrangement between an unknown surrogate mother in California and an aging, overweight, homosexual with dubious priorities. And spare a thought for the resultant offspring: Zachary Jackson Levon Furnish-John.
Admittedly the pop star did try recently to adopt an HIV-positive toddler from a Ukrainian orphanage, but he was denied on the grounds of his age, and the fact that his civil partnership with David Furnish was not recognised. So what isn’t good enough for an abandoned Ukrainian is suddenly acceptable for Zachary? Hello? How many tribunals in this country would grant permission for such an arrangement without the pressure of fame and fortune, I wonder? OK, it did become legal in April here in the UK for two men to have a child by a surrogate and to have both their names on the birth certificate. But we aren’t talking about your average ordinary man here. Children are not commodities. Nor are they fashion accessories.
Surrogacy was the subject of my 2005 novel, Double Trouble.
A nine-year old becomes a bone marrow donor
Robert Sherwood is only nine. His brother Edward is just five. But Edward has aplastic anaemia; his bone marrow fails to produce sufficient new blood cells. Robert’s donation has the potential to save his brother’s life. But … should he have been subjected to this procedure before the age of informed consent? Does the end justify the means? Should he be permitted to say no?
It’s the bread and butter of my working life!
A grandfather has become the first to donate an organ to a grandchild
John Targett, aged 59, couldn’t bear to see his little one-year-old grandson growing sicker and sicker as a result of biliary atresia. So he offered part of his own liver and had the operation just before Christmas. What a gift: the gift of life.
Another British person has ended his life in Switzerland
Andrew Colgan was only 42 (not much older than my son) but he’d suffered from Multiple Sclerosis for ten years and his condition had markedly worsened recently. He died in that now infamous Dignitas room in Zurich. My own feeling is of immense sadness that this young man had been desperate enough to go abroad for a solution to his terrible dilemma.
I really agonised over these questions for Right to Die; I’m still struggling with them three years after publication.
Volunteers keep libraries open
A new report has revealed that libraries in England are increasingly being staffed by volunteers, to prevent closure under cost-cutting exercises. And this at a time when it ought surely be a priority to make books available to those struggling to find employment or to make ends meet. Books can change lives. Penny-pinching in this area is surely stealing vital resources from the future.
Hundreds of people only read my books as library copies. I want them to continue to have this opportunity. It represents something much more exciting than sales figures.
Bishops defend the rights of Christians
Lord Carey, former Archbishop of Canterbury, has urged the prime minister to review the laws which discriminate against Christians in our supposedly-Christian country. And the Bishop of Winchester has reinforced this message. We’ve all heard about the airline worker denied the right to wear a crucifix; the couple denied the opportunity to foster children because of their religious scruples; and the bed-and-breakfast proprietors who won’t take same-sex couples in double rooms in their guesthouse. The law does seem to have sided against ordinary Christians following their consciences.
Religion is closely interwoven with law and ethics and this subject too is a matter of ongoing interest to me.
There was something too about managing Alzheimer’s more cost effectively but I can’t seem to find that. No, it’s NOT a joke about dementia: I genuinely can’t. I looked and in the search found this site which might be comforting for those people struggling alongside this disease. But in the absence of a link to the news item I was looking for, I didn’t want to ignore another topic that I’ve delved into in depth for one of my novels, Remember Remember, because of course, it leapt out of the page at me.
So you see, just in a few days I’ve had my belief that people do care about ethical dilemmas reinforced over and over again. A great spur to another year of writing.