Well, here it is: Independence Referendum Day up here in Scotland, but rest assured, I have no intention of writing about it. It’s been done to death already. Moving swiftly on …
As you know, much of my life has been spent grappling with difficult choices – not in politics, but in medicine – and blog posts on these issues aren’t always very cheery reading, so I’m delighted to bring you a fantastic story this week that’s sure to warm the cockles of your heart (whatever cockles are).
Last year I wrote a review about the book Hannah’s Choice on this blog. It tells the real life story of Hannah Jones who, aged just 13, hit the headlines back in 2008 and challenged the courts when she defied medical advice and chose not to have life-saving surgery. And what’s more her parents found the courage to let her.
But then, Hannah was no ordinary 13 year old; she had a wisdom and perspective borne of suffering. Painful medical interventions and sobering prognoses had been her lot from the tender age of 4 when she contracted leukaemia. And now, on the threshold of adolescence, sadly, her heart was seriously damaged and her organs were failing because of the toxic effects of her chemotherapy. The doctors said her only hope was in a heart transplant. But Hannah declined that option, choosing instead to go home and spend her days surrounded by the love of her family and friends. And she was allowed to make that decision. Wow! What a furore that stirred up!
As I reported on this blog, I was surprised and delighted when Hannah’s mum, Kirsty, responded to my review, and we’ve stayed in communication since. Why am I reiterating this? Because this week marks an amazing milestone.
Hannah starts at Aberystwyth University!
This is the same girl who went home to die. Except … she didn’t. Because a year later when her condition deteriorated she changed her mind and had a transplant, only this time the decision didn’t hit the front pages. Life, Hannah had discovered, was too precious to throw away. Those of us who review high profile cases in medical ethics are often limited to a brief period of time when the stories are newsworthy, and indeed I followed this case closely when Hannah was making her choices. But it’s really refreshing to get a longer term perspective. Especially one like this.
Huge thanks to both mum and daughter for giving me permission to share this news with you. I couldn’t be more happy for them. Cause for celebration indeed.
In that same blog last year I mentioned my brother Rob, who also survived against the odds when he was treated for leukaemia and things went badly wrong. He wasn’t expected to see his 51st birthday. Fifteen years later he has just marked his own milestone: retiring from work aged 65. We celebrated with him a couple of weeks ago.
Here’s to them both and all those, who like them, challenge the rest of us to take stock and re-think our preconceived notions, beliefs and opinions.
Ashya King is five years old. He’s recently had a cancerous tumour removed from his brain – two major surgeries within a month, in fact. If ever a kiddie needed his mum it’s this one. So how come the authorities thought it appropriate to clap his parents, Naghemeh and Brett, in jail hundreds of miles away from their little boy, in a foreign country where he’d be surrounded by strangers speaking Spanish?
According to media reports, the Kents removed Ashya from Southampton General Hospital without medical consent, thereby jeopardising his life. The father claims he told staff he would be taking his son abroad for a treatment he considered less dangerous than the options they advocated. The family then travelled to Malaga to sell a holiday property to pay privately for a relatively new treatment, proton beam radiotherapy (PBT), in Prague, which the doctors in Southampton had declined to sanction. Hampshire Police issued an international arrest warrant on the grounds of suspected child neglect.
When they were tracked down in Spain the parents were held in custody in a high-security prison in Madrid, Ashya was made a ward of court, police were posted outside his hospital room, his six siblings were denied entry. Can you picture the effect of all this on a desperately ill child said to be unable to speak, eat or drink unaided?
Critics have been vociferous – understandably. Words like ‘draconian’, ‘inhumane’, ‘barbaric’, ‘heavy-handed’ abound. The injustice seemed particularly disproportionate when the country is still reeling from the news that the authorities failed hundreds of children in Rotherham who really were abused over a 16 year period. Huge numbers (over 200,000) signed a petition which went to Downing Street.
Then suddenly the authorities did an about-turn, though not before the Kings had been separated from Ashya by 300 miles and several days. David Cameron, recalling the struggles he faced with his own severely disabled son, Ivan, called for ‘an outbreak of common sense’. The Health Secretary offered to fly out an independent oncologist to help advise the parents on the best course of action. Procedures were fast-tracked. This whole fiasco was put down to a breakdown in communication compounded by an over-zealous application of the law.
Then came an emergency hearing via a telephone conference; the Kings – once again his legal guardians – were given permission by a judge to fly their little boy to Prague; a private jet was put on standby ready to transfer him; he’s now in hospital there being assessed. A full review of the British authorities role in this whole sad affair has been ordered.
That’s what’s been reported. The picture is, of course, immensely more complicated than this, and we are not in possession of all the facts. We can’t be. But what I do know is that the doctors caring for Ashya have a solemn and binding duty of care for him; they couldn’t just shrug their shoulders and turn a blind eye when he vanished. They also have the advantage of objectivity and specialist knowledge. They will know, as the parents can’t, the real statistics relating to PBT; the range of emotions parents in these desperately difficult circumstances exhibit; the conflicts between maintaining confidentiality and defending their decisions; the tension between protecting the child and supporting the family; the real balance of risks and benefits in this particular situation.
My own issue is not with the tracking down of the family, but the aggressive way they were then treated. Surely everyone can understand the desperate wish to save the life of a beloved child; sometimes grieving and bewildered parents do take extreme action. I’ve witnessed such extreme reactions in my own professional life, I’ve read and heard of many more. It’s a feature of their frustration, despair, dread, powerlessness. Locking them up serves no useful function whatever. It merely adds to the distress of the little patient and his troubled brothers and sisters. And fuels a sense of injustice and mistrust. Who does that help?
D’you remember the BBC film of this name, A Short Stay in Switzerland, a dramatisation of the last days of Dr Anne Turner who developed an incurable degenerative disorder (PSP)? She made the front pages of the papers with her letters to friends and relations to say, ‘By the time you read this I will be dead‘. In January 2006 she travelled to Dignitas to end her life, the day before her 67th birthday, while she was still able to move and voluntarily take the lethal medication. And a report this week says that almost a quarter of terminally ill people who avail themselves of the suicide clinic’s services are from Britain (second only to Germany).
Well, I’m grateful to be able to report that my own short stay was of a quite different order. I had eight days to revel in the spectacular scenery, travel on the world famous panoramic trains, listen to the enchanting melody of cow bells in the mountains, and inhale the pure Swiss air, with no sinister intent. All I had to do was soak up the beauty and recharge the batteries. Wonderful.
I did my best not to let the Dignitas issue cast a shadow over my holiday, but of course, books featured. After all, this was real Heidi country, Johanna Spyri was born, lived and wrote in and around the rural area of Hirzel and Zurich, and used Graubünden for the setting of her books – all places I visited. Although Spyri struggled to find a publisher initially, the two Heidi stories went on to become by far the most popular works of Swiss literature: they’ve been translated from German into 50 languages, filmed more than a dozen times, and over 50 million copies have been sold world wide. So evocative were they of the Swiss Alps that the real locations exactly conformed to my childhood mental images.
Switzerland is also the stuff of the Chalet School series by Elinor M Brent-Dyer, another big part of my growing up. Stories of schoolgirls who spoke three languages fluently, whose lives were overshadowed by the sanitorium, and who seemed to grow up to have lots of children also destined for the Chalet School. I collected most of the hardbacks (secondhand) in my youth, and passed them on to my daughter, who recently completed the set (58 books), paying a good deal more for rare copies than I ever did! The full complement are destined for the next generation. What a lovely legacy. I might even read them again myself some time – this time in the correct order! – and fill in all the gaps.
I am currently travelling back from Switzerland, so decided it would be a good week for a guest blog. I’ve invited my son, Jonathan, who is himself an avid reader and critic of books, to talk to you this time. Over to him.
I have an amazing inability to remember some things because I refuse to write them down. However, I do know that at some point in the last year or two, I was reading something in which the question of belief came up, and the answer given was “I believe in books”. That part stuck in my head, even if the person saying it didn’t. So what is it about books? Let me go off on a tangent for a minute, I’ll get back to the question unless I forget that as well.
The imminent arrival of the Edinburgh Book Festival programme is an eagerly awaited day in our family. We actually have the day marked on the calendar. For some reason, I get two copies, which is entirely a good thing because there is now one copy for the adults to read and one for the two girls to take away and mark up. Their approach is to highlight anything by an author they think they’ve heard of, a title that sounds fun or a picture that appeals to them. We then sift out the events that are for 5 year olds, much older teens and those where they can’t actually remember why they were interested in the first place. That tends to take care of ninety percent. My approach to the programme has evolved over the years. I now go through it very very slowly so I don’t miss anything. And then do the same again, backwards, and find all the things I missed. I then forget to book and in a blind panic try to find the programme some days after the booking opened and hope for the best. Over the course of the next few weeks, I find other people at work asking me if I’m going to so-and-so because it’s something they know I’ll be interested in…and I discover I’ve missed that as well. It really is pathetic.
One event particularly resonated with me this year (actually, it was three, one of which I didn’t even see until someone else checked that I was going…and I wasn’t… but I’ll stick with the one for now). Michael Rosen, the only poet we all read together at home because we tend to end up crying with laughter after a few of his poems. It turns out he also wrote Going on a Bear Hunt. It also turns out I’m not very good at putting authors’ names with books as I didn’t know those two belonged together until the girls were, well let’s just say it was a good ten years after they had last read the book. My summary of what I was expecting him to talk about is why books are the most important thing on the planet. I might be exaggerating a little, and he was in fact somewhat more measured than that, but the power of books can be remarkable (this is me getting back to the question, by the way, I didn’t forget). A lot of the books I read are just good stories, an insight into someone else’s life, mind or experiences. Some of course are non-fiction. And then there are the ones you can’t forget, the ones that help you to see something you knew was there but didn’t want to recognise or acknowledge.
I’ve had a book on my shelf for a good number of years now, By the River Piedra I Sat Down and Cried by Paulo Coelho. Now, to me he is definitely not the best writer in terms of style or even storytelling. But sometimes he understands something and tells his stories in a way that can change lives. The story in this particular book is nothing special really and you could argue that it meanders around sometimes later on. It’s the story of a man and woman who knew each other when they were younger and then meet up again years later when they have both lived very different lives, even though they are still fairly young. So far, so nothing special. But the book – for me – is really all about not giving up on something which is in our hearts, not allowing ourselves to be so rational that we forget that we once had dreams and still do. Because out there there are enough people telling us what’s sensible, what we should do. This particular book was one that I knew I would come back to, but only when I was ready to make a change in my life. I knew that re-reading this one book would be the trigger for making that change, and that there would be no going back. As Coelho writes,
“You have to take risks, he said. We will only understand the miracle of life fully when we allow the unexpected to happen.”
And here’s the beauty of words, of stories, of books. That sentence (and a lot of others in that book) really hit me. Maybe nobody else will ever have even a similar feeling reading that, but in each book, we find something that we didn’t know or didn’t recognise before. And the same is true of the person writing the story. I’m experiencing that at the moment as I work on writing my first novel (let me tell you, it looks easier than it is!). I find characters saying or doing something that surprises me. It turns out you can’t control it any more than you can control a conversation with another person because you cannot know what they’re going to say and each word changes how the conversation will develop.
So although I knew that Michael Rosen would probably say nothing that I was expecting him to (despite the fact that I had already imagined the whole event in my imagination), I knew that something special would happen just because there was be a conversation between him and an audience and we were all changed by it.
So I believe in books too.
Like Joan Bakewell I say with some amazement that ‘Edinburgh’s jamboree will have to fizz without me‘ this year. Yep, for the first time for donkey’s years I have no tickets for the International Book Festival. Nary a one.
Why? Well, various other responsibilities and commitments have swallowed up these two weeks and I simply can’t spread myself any more thinly. I am, of course, a tiny tad disappointed to be missing the excitement of the tented domes of Charlotte Square, and listening to fellow-authors telling of their inner lives and exploits. Oh yes, and those interesting conversations that crop up every year as we wait in queues or compare notes over a coffee. But I confess I’m also aware of a smidgeon of relief that I’m not up writing reviews at all hours for this or anyone else’s blog.
However, I have been festivalling. Yes sir! I’ve taken to the Festival Fringe – the unregulated unofficial part of the programme – big time, in the delightful company of my appreciative guests. For those of you who aren’t aficionados, the Fringe sells over 2 million tickets and attracts over 3000 acts and events; it’s been described as the world’s largest arts festival … and it’s on my doorstep!
On the way between shows, we’ve been taking leisurely strolls through the Old Town, and the craft stalls of the West End …
… pausing to enjoy the street theatre, (even in the teeth of hurricane Bertha one decidedly damp afternoon!).
And wow! were we lucky with our choice of events. Every single one we went to was well worth seeing (it’s a hit and miss experience normally). Particularly impressive were the Saltmine Company‘s production of John Newton – Amazing Grace (relating the story of the slave-trader cum hymn writer through music and drama); and a dramatic telling of Michael Morpurgo‘s 16 year old Private Peaceful looking back at his life on the night before his execution by firing squad. We were all spell-bound.
Both these events were well attended, but some of the others had tiny audiences and yet were excellent performances. Imagine baring your soul about a suicide or depression or loss or hopelessness to an audience of one for a whole hour! But they grit their teeth and do it. I wish them all huge success. After all, that lone listener might just be a top agent or critic. Many a famous name has been discovered in the Fringe.
NB. You may be reading about Edinburgh at Festival time, but I’m actually currently soaking up the incredibly beautiful scenery and pure air of Switzerland … of which more on my return.
Did you follow the Glasgow 2014 Commonwealth Games, I wonder? I dipped in and out, marvelling all the while at the stunning abilities of these top athletes – their skill and stamina and flexibility and sportsmanship.
The real highlight for me, though, was the diving in Edinburgh. Watching Tom Daley somersaulting from the highest board, executing perfect twists and turns, entering the water so cleanly that the surface was barely disturbed, left me breathless (and anxious!). And the 14 year old Matthew Dixon; how did he feel perching on the very edge of that board 10 metres up the very first time he tried it? How did his mother feel with his hurtling brain so close to that unforgiving concrete? My heart was in my mouth, never mind hers! (Even the more experienced Daley says: ‘When you look down, your knees go weak, your legs turn to jelly and it’s terrifying.’) And then there’s the synchronised diving. How two people can execute identical moves simultaneously during that brief and rapid descent, is beyond my comprehension. This is surely a kind of perfection writ large.
Perfection, ahhh – that brings me to this week’s story of the baby born to a Thai surrogate mother, who has allegedly been abandoned by his would-be parents because he isn’t perfect. Baby Gammy has Downs Syndrome and other co-morbidities. Of course, we don’t know the minds of any of these characters; we only know what the media tell us, and some sources cast serious doubts on the authenticity of this account and the credentials of those most concerned. But picture the scenario from the point of view of the commissioning couple: instead of a beautiful healthy child to bring up and launch into the world, the prospect of a short and difficult life for their baby, and the grief of losing him. This wasn’t what they signed up for. The story is that they have elected instead to take Gammy’s healthy girl twin, and to leave the damaged baby behind. (They themselves are variously reported to have asked for Gammy to be aborted, or to have said they were only offered the one, or to have been informed that Gammy had only a day to live and his mother wanted him to be buried in Thailand.) So what of the surrogate mother? The papers report that she has rejected all offers from other couples to adopt her son and intends keeping him and loving him for as long as she has him. Apparently thousands of well-wishers around the world have begun donating money online to enable this impoverished woman to do just that. Whatever the truth really is, this difficult story has highlighted some of the many ethical issues associated with surrogacy. I’ve had an ongoing interest in this topic ever since I researched it for my novel, Double Trouble, but what do you think of the rights and wrongs of this case?
It was entirely by chance that this week I read The Behaviour of Moths by Poppy Adams – which was given to me by friends who came to stay a couple of weeks ago – and found that it also includes a surrogate pregnancy. It’s a most unusual story and it wasn’t until P126 that I began to understand why they chose it for me; and not until P155 that all really became clear. After that I was glued to it. I don’t want to spoil the dramatic tension for you, so I’ll simply say that it tells the story of two sisters brought up by eccentric parents in a rambling Dorset mansion. The elder girl, Virginia/Ginny, becomes apprentice to her semi-detached father who is a reputable and dedicated lepidopterist. Together they hunt and study every kind of moth they can find, conducting experiments on them, researching their behaviours, amassing a formidable laboratory and collection.
The story begins with Ginny watching from the first floor for the arrival of her ‘little sister’, Vivien/Vivi, returning after decades of absence. Through the lens of Ginny’s peculiar take on life, it recounts each day of one week in their lives when they meet, as old women, one last time. Slowly, gradually, subtly, we piece together their experiences, feelings and differences as they re-live their childhood, and try to resolve the legacy of the past and the accumulated burden of their emotions. And yet … well, how much of this can we really believe? From the time Vivi falls out of the bell-tower and is nearly killed, it’s like a collapsing column of dominoes, each one nudging the next towards an inexorable conclusion. The Behaviour of Moths is a haunting tale, and I’d love to have a one-to-one chat with the author about her thinking, especially about the character Ginny; I’m not at all sure I have understood her correctly.
But to return to the topic of perfection, at one point in the book, Arthur, a troubled young father says: ‘You can’t choose your children. You can’t take the best ones, the ones that survive, the ones that are born the right colour. If you decide to have that child you must take it, whatever happens. You must claim him.’ When things go wrong, the surrogate mother concludes, ‘If it survived it was hers; if it died, it was for me to mourn.’
Uncanny, huh? It could have been written with the Thai family, and the Australian commissioning couple, and baby Gammy in 2014, in mind. And yet this was published in 2008. And is fictitious.
Speaking of perfection … the lilies in our garden are blooming in profusion right now. We have massive banks of them in the house and still a proliferation in the flower beds. Now there’s perfection of a different order, huh?
Today’s blog is for all you folk out there who asked for an insight into the everyday life of a jobbing writer. Yep, you know who you are. So relax; no challenging issues or troubling conundrums this week.
It has been absolutely roasting hot up here at night as well as by day, so sleep has been rather elusive. But hey, that’s had positive consequences. The old brain has had extra time to whir along, sorting, sifting, coming up with new ideas for the current book. Because yes, after the enforced break from serious writing to fulfill other responsibilities, I’m once more back in harness. And better still, the story has now picked up a momentum of its own.
OK, I created the characters originally, but they have now acquired birth certificates – passports even – of their own, and I’m simply taking dictation from them at a cracking pace. Watching and listening, wondering and exclaiming, as they go about their business and make decisions and interact. Smoke is leaking under the door of my study. Inside, the old word count is growing in a most gratifying way. I am not to be disturbed!
As you know I don’t do formulaic – against my principles. But aside from that, this book is completely different from all the others in several ways which is keeping me on my toes: Have I got the balance right? Will this be easily promoted? Is it clear what I’m trying to do? Are my characters distinctive enough? Its working title has already changed three times, which says something about the take-over bid Tonya, India and Chris have waged against me (it’s a three narrator story). They’ve hauled me into colourful and troubling situations already that require me to really think about my own values and prejudices and preconceptions. (Very good for the soul, a spot of heart-searching!) And enough to keep me awake irrespective of the temperature.
I never divulge details of a story whilst it’s in the development stage but I don’t think I’d be jinxing anything if I let you know that I’ve steered away from a concentration on anorexia to a much broader look at body image issues. And boy, has that opened up a can of worms – several actually! Whereas I was a bit ambivalent, now I’m getting excited about where this is taking me. I want to know what happens!
I really must get back to watching teenage India grappling with her deep-seated angst …
Hmm. One of the entries on my perpetual calendar this week read: There can’t be a crisis next week. My schedule is already full. It resonated! Which led me to take stock of things – novel 9 in particular. And in truth the state of play vis-a-vis my writing at the moment is probably best captured by a little analogy: it looks rather like the construction site near where we live, which has been in a state of flux for almost a year now.
Roads are laid, then dug up again …
Other roads go nowhere …
Ground is cleared and then weeds over again …
Barriers are erected to protect areas actually being built, but there’s little to see when they come down again …
Heaps of material are deposited in various places but seem to remain untouched …
Glimpses appear of the final product but they remain a promise rather than a functional reality …
However, I like to hope that there’s a master planner at work behind this seeming inertia and mayhem, just as my brain is (I hope!) at work on the novel currently under construction, even though outwardly I am frolicking with grandchildren and entertaining summer visitors and going on holiday and … well, you get the picture. And I’m sure you’re perfectly capable of interpreting my little parable without me spelling it out. One day something well-planned and understandable and attractive will emerge triumphant. It will! IT WILL!!