Alzheimer’s
Be careful what you wish for
Well, my latest novel, Over my Dead Body, has finally left my safekeeping and gone out into the big old world for review. It’s always painful to make that leap. As the adage goes, Perfection is always one more draft away, and I could tweak for ever. But there comes a point where you have to say enough’s enough and let it fly the nest.
However, the characters are still very much living here with me. I keep waking at 4 or 5 in the morning and listening in to their conversations. And I confess I have sneaked back to the manuscript several times and changed the odd thing or two. So I’ve decided to give myself a new deadline and a new task to try to break the cycle: get all my folders (containing information for other novels) up to date by the end of this week. And that’s where today’s topic came crashing in. A disturbing story from the week’s papers.
The first headline jumped out at me: Belgian twin brothers choose euthanasia rather than blindness. Assisted death’s one of my pet subjects, as you know. The second headline ran: Euthanasia twins ‘had nothing to live for’.
Marc and Eddy Verbessem were 45 years old, both cobblers in Antwerp, who’d lived together all their lives. They were both born deaf, and developed their own form of communication. They also suffered from a whole range of other genetic medical problems.
Now, just in case you hadn’t realised, Belgium is one of those countries where euthanasia is allowed if those requesting it are able to make a sustained and competent case for it, and if a doctor judges that they’re in unbearable pain. That’s been the case since 2002. But … neither of the twins was terminally ill; neither was in extreme pain. They’d sought death because they’d now found out they would soon go blind. They couldn’t bear the thought of being unable to see each other again, and losing their independence. Think about it for a minute. Is that adequate justification for killing two middle aged men, d’you think? Would you do it?
The Swiss position, which we hear much more about, is different. There the patient must be able to take the lethal dose themselves – assisted suicide. Would you find this alternative more acceptable?
The Verbessem brothers’ local hospital turned down their application for euthanasia. Indeed it took them almost two years to find any institution that would administer the lethal injection. Two years! Imagine what that was like. The doctor who eventually agreed considered that there was ‘unbearable psychological suffering’, (a subjective assessment to some extent at least) and the deed was finally carried out on 14 December.
I read on. And found a chilling additional note in the article: ‘Just days after the twins were killed by doctors, Belgium’s ruling Socialists tabled a legal amendment that will allow the euthanasia of children and Alzheimer’s sufferers’ … ‘to take better account of dramatic situations and extremely harrowing cases.’
What would you say to that?
Not every one agrees even in Belgium. Last December the European Institute of Bioethics based in Belgium published a report that expressed concern about the absence of effective controls. It notes that over a period of 10 years and 5,500 cases of euthanasia, not one had been referred to the police for investigation. They fear the interpretation of what is allowed is spiralling out of control. What would you say?
We so often skim articles and books picking up the main thread but not pausing to consider the reality or consequences of what we’ve been told, and I was in danger of doing exactly that with this story. But the more I read the more I was challenged. So the thought for the day on my perpetual calendar was particularly apposite: Readers are plentiful; thinkers are rare. (It’s from Harriet Martineau – a Victorian writer and social theorist of some repute, in case you haven’t heard of her.)
This snippet certainly made me think.
(Apologies if you have more accurate knowledge from the inside; I could only go by what was reported in several papers and on the net. Don’t hesitate to correct me if you know better.)
As good as Jodi Picoult or your money back?
Time to return to the topic of that sticker I mentioned a few weeks ago, as seen on The Midwife’s Confession: ‘As good as Jodi Picoult or your money back.’ Similar to the one on my own latest novel: ‘If you like Jodi Picoult you’ll love Hazel McHaffie.’ Seeming even more relevant now because at my book launch last week I was introduced as ‘Scotland’s Jodi Picoult’!
Question is: Is the comparison a good or not so good idea?
I confess I’ve only just discovered Diane Chamberlain, the author in question. My daughter gave me one of her books for Christmas, and I bought a second one on the strength of the blurb on the cover. I read them both in four days during the Christmas holiday break.
The resemblance is obvious from the outset – before you even open the book. The pretty feminine covers. The personal challenge: ‘A lie will save one family, the truth will destroy another. Which would you choose?‘ Both very Jodi Picoult.
So what about inside? Was this author as good? Would I be due a refund? Should I be glad or sad that my own latest book has a similar slogan?
Tara, Emerson and Noelle are close friends, so the two younger girls are devastated when Noelle is found dead after taking an overdose of pills. But as they sort her possessions and talk to other people, facts come to light which show them that the Noelle they knew was a fiction.
When they unearth a letter revealing a hideous secret, they are torn by indecision. If they tell the truth it would destroy a family; but by maintaining the lie they would be perpetuating the grief of another. Add to this a twelve year old with recurring leukaemia loaded with steroids and fighting for her life; a dead baby; surrogate pregnancies; and you have a flavour of the intense emotional and psychological undertones of this story.
The multiple first person voices style is very Picoultesque, but there the similarities end. No court scenes or legal ding-dongs. No stereotyping. No homespun philosophising. Indeed, Chamberlain’s psychology is altogether much more convincing and less contrived than Picoult’s. Not surprisingly perhaps since she’s a trained psychotherapist.
So what of the second of her books that I read? 
Breaking the Silence is written very differently. All in the third person too. Instantly I feel a lift of spirits. Here’s an author who rings the changes. Who’s not formulaic or predictable. No rut in sight. My kind of gal.
The story weaves between the present for astronomer, Laura Brandon, and her daughter, Emma, and the past life of former nurse, Sarah Tolley, now an old lady with Alzheimer’s.
Moments before his death, Laura’s father makes her promise to visit Sarah, who’s in a retirement complex, but whom she’s never even heard of before. As a consequence of her doing so, however, Laura’s husband commits suicide. Her five year old daughter, Emma, witnesses the shooting and now refuses to talk and is clearly terrified of men. On the advice of a child therapist, Laura contacts Emma’s biological father, Dylan Geer, a hot air balloonist, who was unaware of her existence but becomes mesmerised by this mute child.
But as this father-daughter relationship blossoms, Laura becomes increasingly obsessed by the stories emerging from Sarah’s fading memory. She starts to unravel a tale of love, despair and a terrible evil that links them all.
Chamberlain’s training and experience in psychology have given her a genuine understanding of how people tick, how relationships work, helping to authenticate the actions and reactions of her characters. They ring true. Having had to observe professional confidences herself (like me), I think she understands the capacity of some people in positions of trust to bear a hefty burden of secrets, and the inability of others to do so. Lies and deceptions play a large part in both books.
Chamberlain says of her novels that they are ‘part suspense, part mystery, part romance and one hundred percent family drama.’ A fair assessment. The suspense and mystery elements keep the pages turning effortlessly. I was particularly gripped by the stories of the CIA government approved mind-control experiments that took place in the 50s and 60s in psychiatric hospitals in the US, about which I’d heard but never understood in this intensely moving way before. No wonder this was the inspiration for Breaking the Silence. Very clever.
But I must confess the coincidences in both books stretched my credulity somewhat, especially in The Midwife’s Confession. OK, they tidied up the story lines but they lacked plausibility for me.
So, will I be reading more Chamberlain? Probably. (And keeping my fingers crossed that she doesn’t pall like Picoult.) Will I be claiming a refund? Happily, no.
What then of that controversial sticker: did it help or hinder? Well, it meant the book caught in my antennae initially, which was good. Although for anyone who really doesn’t care for Picoult, it could have had an unwarrantedly negative impact. So swings and roundabouts there maybe. It also made me compare the two authors throughout, which had pluses and minuses for Chamberlain. But for me overall Chamberlain came out of it well.
And for Saving Sebastian? At the moment the jury’s still out. Time will tell. And your input … please!
New Year, new impetus
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.
Reflections on 2010
Ahah! My last blog for 2010. And inevitably one looks back over the year.
The most stressful event?
The decline and death of my mother. I’ve missed her very much over this Christmas period in countless little ways. But I’ve also been more acutely aware of what a wonderfully supportive family I have. Bless them all.
The most surprising?
Recognising the necessity to relinquish some commitments for the sake of my health – and DJ’s sanity! – and what’s more, actually finally doing so. Although one relinquishment in particular caused me considerable sadness: the Institute of Medical Ethics. A fantastic committee to work with, and an organisation that has been so nourishing and encouraging of me for many, many years.
The most challenging?
Two events jointly share the award: judging the Institute of Ideas debates; and being a member of a Data Monitoring Committee for a major international clinical trial. Both forced me well outside my comfort zone and underlined my limitations. These are places I won’t be going again – there, it’s written in stone!
The most unexpected?
Not finishing a book I started. That’s a first. The book was The Inheritance of Loss by Kiran Desai and I just had to abandon it. OK, it won the Booker prize but I’m afraid life’s too short for a novel that’s that much of a struggle for me now. (Hmmm. Looks like my obsessions are starting to fray at the edges!)
The most encouraging?
Meeting new people in relation to my novels. Because I write about medical ethical dilemmas, I come into contact with families who’ve lived through similar experiences in real life. This year most notably, heroic folk caring for loved ones with Alzheimer’s, and those who have donated organs for transplantation – their own or those of their loved ones. And I am constantly awed and humbled by their generosity in sharing their stories. They remind me all over again why I took this turn in my career. And they encourage me to keep writing. I salute them all.
The most therapeutic?
The ongoing unconditional love of my four fabulous grandchildren.
And speaking of them, quite a number of you have written asking what I did for them in this year’s Christmas story. If you’re a new visitor, I should explain, every year I write a story for the children (currently aged 10 to 5), I make costumes and scenery, etc, and they act it out (totally unrehearsed). DJ takes photos throughout which we use to illustrate the book produced soon afterwards.
So, here’s ‘the stage’ for this year’s production …
And (with kind permission from parents) the principal characters: The Bag Lady …
… and the supporting cast: three Shadow People (street children) …
Inside The Bag Lady’s 40+ bags are all sorts of props and games and edibles. And, through playing and talking together they each discover the real person behind the stigma. And learn the importance of treating everyone kindly, and as you would like them to treat you. But it’s all sweetened with magic jelly babies … and talking dragonflies … and monitors that measure sportsmanlike qualities … and a little sleight of hand … and some rather scary Gurgling Gozers that sink their teeth into carotid arteries under provocation … and a crazy but lovable dog called Digby … the usual kinds of story-telling tricks. And of course, a happy ending …
… and a banquet.
All good wholesome fun. So thanks for asking.
But before I get back to editing the book, The Bag Lady and the Shadow People, (don’t forget you heard about it first here on VelvetEthics!) it’s time to say a big thank you to YOU for reading my scribblings. The weekly blog can feel rather self-indulgent, I so much enjoy writing it. And then you tell me you’ve been moved or amused or challenged by something and I get a warm feeling knowing you’re sharing my musings and struggles.
I do sincerely wish you all peace and happiness in 2011. And a softening of the hurt if you are one of those for whom 2010 has been a tough year.
Best laid plans gang agley
A couple of months ago Professor June Andrews of the Dementia Services Development Centre at Stirling University ordered 600 copies of my novel Remember Remember to distribute to delegates at the DSDC’s 4th International Conference in London. How cool was that!
© Tony Marsh Photography
Well, the conference has just happened. Here’s June blowing out the candle on the anniversary cake with the actor, Simon Callow.
I was wheeled in on a meet-the-author-and-get-your-copy-signed basis. And what an experience it turned out to be. On several levels.
Now, I must confess, London doesn’t feature on my list of top ten favourite places – I’m a country bumpkin at heart and all that noise and dirt and frenzy isn’t for me. But the ExCel Centre in the Docklands proved to be a stunning venue – loads of space; joy-of-joys – immaculate loos with never a queue (and believe me that’s a rarity at big conferences); abundant drinks breaks; helpful staff; a chocolate fountain … ExCellent!
© Tony Marsh Photography
Unfortunately though, there was one serious glitch. In spite of all the careful planning and checking, the books didn’t arrive until lunchtime on the last day. This highly organised team (in pink to make them easily identifiable to those without dementia as well as with) must have been pretty fed up about that, although it was completely outside our control, but to their credit they remained calm and philosophical – at least outwardly.
However, the hiccup had an unexpected bonus for me; it meant that I was free to attend sessions on the previous day. Wow! Lots of inspiring things are going on in the world of dementia and it was great to hear about them from the frontline people. Practical advice as well as careful analysis of research findings. A veritable feast.
Just in case you don’t know, age is the strongest known risk factor for dementia. In a week where I am due to celebrate (?) yet another birthday, that’s quite a sobering reality. As my delightful 7-year-old grandson informed me spontaneously, I shall be older than the number of zoo homes around the world for the snow tiger! (Answers on a postcard please.)
I can’t, of course, slow down time, so I’m concentrating on mitigating other risks:
- taking care of my cardiovascular system
- watching my diet
- keeping my mind and body active
- maintaining a strong social network …
It was useful to have them all rehearsed so succinctly, and if I hadn’t been feeling utterly lousy from a bug on the return journey I’d have started exercising in earnest there and then. As it was I was so dizzy and sick I had to lie down all the way. I even had to pack away the book I’d taken for the purpose –The Book Thief by Markus Zusak – a treat I’d been specially saving for this trip. More of that another time.
© Tony Marsh Photography
But let me tell you, being in a conference with people who work in the world of dementia is an incredibly uplifting and reassuring experience. This is my second exposure, and as last time, I was blown away by the sheer warmth and empathy of these special folk. En masse they leave a huge impression. As one of the plenary speakers said, they aren’t interested in a love of power; they believe in the power of love. Too true. It’s positively palpable. It was a real privilege to listen to them and already they’re contacting me with comments about Remember Remember. Lots of them started reading as they travelled home on trains and planes – what a heartening picture that conjures up. Others asked for their copies to be dedicated to colleagues and groups and special relatives and friends grappling with the realities of the disease. Every last one of them was so courteous and appreciative. If the book helps them to feel they are not alone, if it enables them to be even more sensitive, to care even better, it’ll have achieved its aim. I’m only sorry our one-to-one conversations were curtailed because in the event there were only three hours left to sign 600 books.
I’m indebted to my altruistic publisher, Luath Press, and to the wonderful staff at the Dementia Services Development Centre, for making this all possible. OK, the plans did go ever so slightly agley*, but the overall experience was fab! (Oh, and special thanks to Tony Marsh – lovely man as well as talented artist – and DSDC for the photos.)
* For the uninitiated: a Scots word for awry taken from Robert Burns’ famous quote: The best laid schemes o’ Mice an’ Men gang aft agley (From ‘To a Mouse’)
PS. Also during this past week, 45 organisations have united to form the Dementia Action Alliance. They say that by signing a National Dementia Declaration they are setting in stone their ‘very real commitment to transform the lives of people with dementia and their carers.’ They’re seeking early diagnosis, adequate support and help, and research towards a cure. All power to their elbow!
Dementia? Think again!
With my own book about Alzheimer’s safely published, and my mind more to grips with the fact that I’m now living with dementia in my private life, I’ve had space to go back to reading about the subject. Facts this time, more than the fiction I’ve warbled on about before.
And it’s rainbow time.
But before I antagonise anyone by seeming too idealistic, let me hasten at the outset to acknowledge a basic reality. No-one wants to develop dementia. No-one. Neither patient nor family will embrace it willingly. If it does snake its way into our lives, it’s natural to be sad and to grieve for all that is, or will be, lost. But the very fact that we can’t reverse the process makes it doubly rewarding to learn that the glass can still be half full, or maybe a quarter, or … And having been through a kind of grieving process myself this year, I want to share something of that discovery.
I’ve read too many things to bore you with anything comprehensive, but three books make me want to send an email to everyone who is dealing with dementia in any capacity. They are
Contented Dementia by Oliver James
And Still the Music Plays by Graham Stokes
I’m Still Here by John Zeisel
All three are
- written by people with real hands-on experience
- built on the premise that understanding the inner world of the person with dementia can have a considerable effect on the lives of all concerned
- designed to be read reflectively not quickly
- starting points that prompt contemplation, questioning, and perhaps even a little experimentation.
You might find aspects of them irritating at times – I know I did! But I’m an impatient ratbag anyway. Bear with them anyway. Why?
Contented Dementia describes in detail a method of responding to someone with dementia in such a way as to minimise confusion and distress, and to steer them into a safe and happy place. The strapline captures the sense: 24-hour Wraparound Care for Lifelong Well-being. It puts a different slant on behaviours that are potentially trying – even the endless repetition! – and shows how they can be made to work for good. This book is written by a psychologist, and I was much struck by his introductory comment at a session I attended in the Edinburgh International Book Festival: ‘I’m probably the only man in the country who, if I develop dementia, would like to be cared for by my mother-in-law!’ Some recommendation, eh? But it was she who devised the Specal scheme outlined in his book.
And Still the Music Plays is a series of very readable stories about people exhibiting challenging behaviours. It provides insight into what might be causing someone to wander, to be agitated or aggressive, and how to channel that understanding so as to prevent or reduce distress. This one is the easiest and most entertaining read of the three, but gives a way through the most demanding of experiences. And it offers a glimmer of sanity for carers at their wits end trying to deal with violence and severe hostility.
I’m Still Here offers a gentle, artistic approach, describing ways of connecting with abilities and emotions that remain intact, and of enhancing the quality of life of the person with dementia (and their loved ones) by maintaining those connections with people and the wider world. There’s more medical and specialised language in this one but it opens up avenues to pursue which are accessible and available to most of us – art and culture, drama, meditation.
So, to anyone who is working alongside or living with people with this illness, I recommend one or more of these books. To everyone else I say, if you avoid contact with people with dementia, or have a horror of the disease yourself, give it a whirl. It’s possible that knowing more could just reverse your opinion, increase your capacity for compassion, and even enhance your own life.
As for me, I’m lost in admiration for the people in these books who have cared enough to search for understanding, and who have enriched the experiences of those who would otherwise have been left anxious, agitated, apathetic or aggressive. I salute them all and hope their philosophies will percolate far and wide, and make the world a better place to live in.
Am I really me?
I’ve just had a complete stranger contact me to check: Do I exist? Am I really me? Did I actually win a prize in a writing competition as an advert claimed?
Now, I’ve lost count of the number of people who’ve told me they’ve seen this photo (top right) in the said advert – for a creative writing course with the Writers Bureau. It’s very small fry as prizes go and I was only runner-up, but the advert’s appeared in a range of different publications: Big Issue, The Daily Telegraph and Private Eye amongst others. And it’s been running for seven months now. Wahey! All free – and unsolicited – publicity for me!
But this is the first time I’ve had my credentials – nay, my very existence – challenged. It transpired this gentleman was wondering about taking a similar course but was suspicious it might all be a money-making scam. He checked me out on Google and there I was: a real live person. And a person who writes to boot.
So, now he wanted to check the authenticity of the prize. And that’s when he contacted me. I could easily reassure him that yes indeed, I’d won a couple of awards with the Bureau.
Back he came. Would I recommend the course? I would. Wholeheartedly. Now, a bona fide sceptic might be thinking, Well, she would say that, wouldn’t she? It’s quid pro quo. They promote her work; she endorses their course. But my recommendation was most sincere. Why? After all, lots of people say creative writing can’t be taught. You’ve either got ‘it’ or you haven’t. The course showed me that
• Techniques can be taught
Two of my brothers, who are more practically inclined, think I definitely have a seriously abnormal quirk in my brain because I love words so much. I mean, who on earth would scribble a weekly blog from choice?! Well, the inclination may be innate, but the technique of writing publishable work, turning ideas and drafts into polished and focused articles or books which publishers will accept, even pay you for, is an art that can be honed and refined.
• We are not our own best critics
As writers we have no end of baggage cluttering up our discriminatory antennae. There’s all the passion we feel about the subject, the pain of giving birth to that text, the protective instinct of a mother. We need other detached eyes (whoops! well you know what I mean) to see it for what it really is, and help us to identify our faults and relinquish the bits we cherish. And you need to really respect your critic’s skill and judgement to make that kind of sacrifice.
• We benefit from knowledgeable and objective criticism
It’s delightful to have friends and your Mum telling you how much they love what you write, but what you really need, if you’re serious about writing, is people who truly understand what good writing looks like. Most if not all the tutors on the course I took are themselves established writers. They know the reality as well as the ideal. They speak with authority. They give advice that’s worth listening to. But they temper their criticism with kindness because they also know the sensitivities and vulnerability of the novice author.
• Reading purely for pleasure isn’t the same as reading analytically
Tutors can help to direct the would-be writer to good prose, to analyse what makes it sing, and to apply the principles to their own writing.
• Broadening experience of writing is beneficial
I must confess I was slightly begrudging about doing the non-fiction half of the course first. I’d already published nigh-on a hundred articles in prestigious peer-reviewed journals. Surely I didn’t need … What a waste … OK; I resolved to complete the early assignments as quickly as I could to get them out of the way, and then concentrate on the fiction component. Which showed me how wrong I’d been in my initial resistance. Writing to order – about things I’m no expert in – was a salutary experience and an excellent discipline. It opened my eyes to new experiences, made me observe in a different way. I wrote about events as diverse as attending a craft fair, visiting an exhibition of photography through the ages, going for a meal as if a food critic. And always there was the challenge: could I make words work for me without the underlying drive that had propelled my writing before? Words moreover that someone else would enjoy. And there was no room for half-hearted effort just because this wasn’t of any interest to me. A real live, eagle-eyed someone was poised ready to rip my mediocrity to pieces; how humiliating would that be? No, it was nowhere near the doddle I’d anticipated.
• It helps to know one’s own strengths and weaknesses
Over the full course I covered everything from writing a letter to a newspaper through to a play for radio. Getting tasters of so many different kinds of writing not only opened up new avenues of experience, but also helped me see where I definitely didn’t want to go. Or probably shouldn’t attempt to go! I confess I was rather pleased with my play, a murder mystery with haunting subtleties and a nice twist in the tale … maybe … perhaps … I began to see the credits rolling … My tutor soon disillusioned me!
• Creative writing courses aren’t like sausage machines
Some cynics dismiss these courses: they churn out clones producing formulaic writing. Not the distance-learning course I took! Far from it. It was always student-focused, individually tailored. The assignments were set, certainly, but I was free to interpret and respond as I saw fit. And my tutor always commented specifically about the work I produced; never forced me into a mould of her making. And her assessments were always fair and focused – on me, my style, my end game.
• It helps to have aims and goals
Right from the start she’d wanted to know, what was I looking for from the course? What were my personal aims and ambitions? I did actually have a clear agenda from the outset: I wanted to write a set of novels about medical ethical dilemmas. To make ethics come alive through fiction. This was to be my unique selling point. My tutor understood and respected my need to be different. And she gave me good honest criticism to that end.
• Knowing the market is vital
Every assignment had to be written for a particular publication or potential buyer. It took hours: analysing the market, trying to understand what editors and publishers were looking for. At times I found it tedious; I was reluctant to put in the effort. After all I had no intention of writing for food journals of women’s magazines or local papers. No way! I wanted to be a novelist. Again, how wrong I was. That discipline taught me much, and since I’ve published my novels, dealing with important life issues, I have indeed written for several newspapers and a range of magazines, bringing my books (and the issues) to a much wider audience than would otherwise be possible. But now I understand how important it is to do your homework.
• Persistence and determination are essential for success
I am constantly amazed that I’ve won any prizes for my writing. I still feel like a raw amateur playing out of my league, in many ways. But the fact that I have serves to underline a sad fact. In today’s climate it’s hard to get published. You need an over-developed persistence gene and a hide like a rhinoceros. I happen to have inherited a stubbornly determined streak that refuses to give up on my ambition.
• Having a niche market helps
I also have one unusual advantage. I inhabit a rarefied world; the world of medical ethics – the dilemmas thrown up by modern medicine.
In real life all of us are touched by these issues. Someone we know, or we ourselves, face these challenges. Maybe we develop a life-limiting illness; should we end our life before the agony becomes unbearable? Maybe we find ourselves unable to have children; do we go for sperm donation or surrogate pregnancy? Maybe we’re fertile all right, but we don’t want this unwelcome pregnancy; should we have an abortion? Maybe a loved one develops Alzheimer’s; how far should we go in caring for them?
But the subject of medical ethics is shrouded in esoteric language and obscure arguments. We need a user-friendly means by which ordinary people can be helped to understand the pros and cons of different sides of the arguments by getting inside the skins of people living through these scenarios. There’s a niche for novels that make the issues accessible.
There is a space for me.
Next week I promise a short post to compensate for today’s essay!
Unique selling points
How’s your mental stability this week? Mine’s been seriously under scrutiny, I can tell you.
It’s all this reading. And not just any old reading; almost all of it novels that feature Alzheimer’s – otherwise known as ‘the competition’. Day after day, night after night. Mammoth stints, made possible by lots of knitting. I don’t think I’ve mentioned before that I concentrate better if I knit and read simultaneously. Started when I was a kid to stop me nibbling my nails when I was absorbed in a book. So, as the pile of books has diminished, the stack of woolly beanie-hats has grown – it’s that time of year when, at our church, we fill Christmas shoeboxes for deprived children, and hats are on the list.
It (the reading not the knitting) all began with two penetrating questions from my publisher:
Q1. What other novels are there out there that feature Alzheimer’s?
Q2. What’s different about yours, ie. Remember Remember?
Gulp.
My novel is due out early next year so I shot off post haste to the internet.
Bigger gulp.
Wowwwee! I’ve made a little list (yep, it should be sung to G&S) … 38 and still counting. I don’t know why I was surprised at the number. Alzheimer’s is so much part of life nowadays, it touches most of us in one way or another; of course authors write about it. But – cue huge sigh of relief – none of the novels so far duplicate Remember Remember’s unique selling point. Phew!
So, what can I conclude to date? And have I made the right decisions for my own book on the subject? There’s still time to tweak it if necessary.
a. Alzheimer’s is often quite incidental to the main story line.
An exception there is Still Alice; a brilliant insight into the mind of a Harvard professor who recognises she’s losing her grip on reality. I loved this book even though it made me question my own grip on reality! I kept (sneakily) testing my memory, as regular visitors to my blog may recall … or not? … steady now … there’s a mini-mental test you can do …
To tweak or not to tweak? Not.
In Remember Remember, Alzheimer’s is central to the plot. And it’s told in the first person: Jessica starts unravelling her mother’s story first; Doris herself takes up the story next with her own insights and memories, moving backwards from advanced dementia through to her youth. And yep, I still think that was the right choice. Especially the backwards bit.
b. The novels often take the form of family sagas.
Hmmm. So does mine. Reading them one after the other probably isn’t a good idea. I’m all genealogied out! OK, maybe it’s a feature of my atrophying memory, but I must admit, delving in depth into different generations has been heavy going and confusing at times. Glimpses into different cultures, different eras, may be illuminating (Hanna’s Daughters is set against a background of Scandinavian conflicts and customs; The Bonesetter’s Daughter takes place in China), but keeping a grip on which generation we’re in and who’s influencing whom can be taxing. Especially when names are very similar: Hanna, Anna and Johanna are all principal characters in Hanna’s Daughters … I mean!
To tweak or not to tweak? Probably not.
From early on I was aware of the potential for losing readers so I added a family tree for Doris. I’m hoping that will help.
c. Women feature heavily in these family sagas.
Yeah, well they do in real life, don’t they? And they do in my book. But it was a refreshing change to have a happy homosexual son rather than a troubled married daughter as the central character in Rough Music.
To tweak or not to tweak? Not.
It would require a massive rewrite to change that. So no. But I’m quite glad now that I added a grandson, James, to give a male perspective, although, to be honest, it wasn’t deliberate at the time. He just appeared.
d. We view Alzheimer’s more sympathetically when we get to know the person before the plaque set in.
Often they’re portrayed as gritty little characters who’ve survived against the odds (September Starlings, Hanna’s Daughters, The Bonesetter’s Daughter, Let’s Dance). But so far the prize for most tender portrayal goes to Nicholas Spark’s, The Notebook; a cleverly plotted love story with a difference. And depicting, it must be admitted, a rather exceptional form of dementia.
To tweak or not to tweak? Not.
Both parts of Remember Remember reveal the character of Doris as a feisty, generous, open-hearted woman before holes appeared in her brain. So again, that still feels appropriate.
e. People worry about the genetic implications.
Will I go the same way? Is it in my genes? Genetics is a very specialised and complex subject. And too much science in a novel can be a big no-no. Early on in my metamorphosis from researcher to novelist, a helpful agent told me that I must put my ‘formidable academic background’ (his words; certainly not mine!) on one side in order to achieve a lightness of touch, so I guess I’m particularly sensitive to this hazard. The Story of Forgetting pursues a genetic theme and is awash with medical detail, but it’s partly fact, partly fiction, so it can afford to be more dense and esoteric in places. It wouldn’t be the novel you’d select if you wanted light diversion therapy, though.
To tweak or not to tweak? Definitely not.
Been there; done that. In my first draft of Remember Remember I wove in a plot line about inheritance of the disease, but a medical friend who’s an expert in both care of the elderly and genetics steered me away from it. Far too complicated! She was right. I was out of my comfort zone big time. So thanks to her I think I’ve avoided this potential mistake.
f. A fairly universal theme is the strain on relationships.
This emerges strongly from books like Shades of Grace, Animal Dreams, Almost Moon and Have the Men had Enough? Alzheimer’s isn’t exactly a fun subject and no such story would be believable without stress and tension. Love and hate get thoroughly mixed up and several characters contemplate hastening death. (I won’t spoil plots by divulging names.) But a healthy dose of family loyalty and a generous helping of humour in the mix go a long way towards preventing the story being depressing or maudlin. Who could fail to be amused by Uncle Rollie in Diminished Capacity, who baits hooks connected to the keys of an old typewriter by the side of the Mississippi, so that the local fish can write poetry?
To tweak or not to tweak? Probably not.
For a number of years now I’ve spent time with people with dementia on a regular basis; I would never consciously belittle or ridicule them, but dividing lines can be extremely fine. I’ve tried to be sensitive in my attempts to keep a light touch but just to check I’ve got the balance right, I’ve given the manuscript to a number of people who know exactly what it feels like. So far nobody’s crossed me off their Christmas list.
g. Dementia in the family throws up lots of issues.
‘Issue-books’ in the wrong hands can be tedious and off-putting; most of us don’t turn to novels to be preached at. I’m studying this minor mountain of books to see how other authors handle the thorny issues of who cares, when mental competence is lost, how far we can or should go in safeguarding safety and dignity, etc. No consensus as far as I can see … except that these are real issues, and they’re decidedly thorny. Let’s Dance and September Starlings get deeper than most into these questions – Laura Starling even contemplates euthanasia for her beloved husband.
To tweak or not to tweak? Not.
My unique selling point relates to this matter of issues, more specifically the ethical challenges. But hey, I want you to read the book so I’m not going to introduce any spoilers in my blog!
Now, which book next? And where are my size 11 needles?
