Hazel McHaffie

Good care? What is it?

Well, October has begun with a rash of developments in my world.

Assisted dying lawsTo begin with, another state in the USA, California, has made assisted suicide legal as from 1 January next year. They are the fifth state to do so. The law, based on a similar measure in Oregon, allows doctors to prescribe drugs to end a patient’s life if two medical practitioners agree the person has only six months to live and is mentally competent. Interestingly, in this case, the law as it’s presently written, will expire after ten years unless extended. Apparently this was a compromise made for those lawmakers who fear unintended consequences such as targeting of the poor, disabled or elderly. Sounds like a sensible caution to me.

This week too, we’ve heard of a report by the Economist Intelligence Unit, which finds the UK ‘the best place in the world to die’ as the newspapers put it; top of 80 countries involved in their survey when it comes to end-of-life care. Key factors are identified as a strong hospice movement, palliative care integrated into the NHS, specialised staff, and hospital/community integration … hmm … more of this anon.

Then, building on this, Baroness Ilora Finlay, a major spokesperson on the topic, and herself a former medical consultant in palliative care, came on TV this week to talk about her draft Palliative Care Bill which tries to address the disconnect between medical and social services in care of the dying; to provide equitable and efficient care for all. Being top in the survey is encouraging, she says, but there’s still plenty of work to be done to ensure excellence across the board. Indeedy!

The emphasis is on really listening to what the families need at a time when they are caring for a loved one, and providing a central hub for familes to liaise with, in order to avoid the frustration of time and effort wasted searching for the right people to help.

Aged hands claspedThis all resonates for me at the moment. Someone I care about was recently admitted into the acute NHS system, into a vast, bright new shiny hospital, for management of her broken hip. Sybil (not her real name) is in her nineties, she has dementia, she is bewildered and confused by the alien environment, as well as immobilised by a fracture and on medication for pain relief. I’m quite sure her actual medical treatment was expert: the hip was fixed rapidly. But – a big BUT – the staff in the two wards Sybil was placed in were openly hierarchical, those with power seemed to have no time to listen, no willingness to know what would help to keep this lost wee soul calm and secure. It was down to us who know and love her to try to fill these gaps as best we could in the times we were able/permitted to be with her. And it was obvious that Sybil was not happy; she caused mayhem on more than one occasion!

This week she’s been transferred to a low-tech community facility; older, more run down, higgeldly-piggedly. But the difference inside the ward housing her is palpable too. Everywhere you go staff are friendly and helpful, anxious to accommodate the needs of the patients in their orbit; anything that will help Sybil settle and smile is welcomed. We can walk away knowing she’s in good hands. She’s already visibly more relaxed.

Good care is so much more than up-to-the-minute medicine. And when it comes to elderly people with dementia, it’s often the little things that make the difference between wanting to go on and preferring to die; little things that tell them they are valued and cherished and understood.

Old fashioned pen and inkFifty years ago I wrote an essay – using this very Parker pen – about the care of patients being so much more than delivering technical procedures efficiently. It won a prize from the British Medical Association no less! Back then the medical technology and capability we take for granted in the twenty-first century was undreamed of, but basic human needs remain much the same. That message is needed every bit as much. Let’s not lose sight of this in all our cleverness.



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Mental health

The Orchard gardenI’ve always been conscious how borderline I am psychologically-speaking. I didn’t dare dabble in psychiatry during my training; the dividing lines between health and pathology seemed far too fragile and close to home!

So being immersed in a novel about mental health issues, living inside the skin of characters with self image problems, has been a somewhat precarious occupation for me. It was imperative that I should burrow deep inside their minds in order to understand how they would speak, act, react; I frequently got the there-but-for-the-grace-of-God feeling. So when I saw the Doors Open programme for this weekend, the Redhall Walled Garden in Edinburgh’s Colinton Dell jumped out at me and topped my list of paces to visit.

The garden itself dates back to the 18th Century but for the last 27 years it’s been operating as a Scottish Association for Mental Health facility. Trainees (as they are called) attend for at least three days a week building up to five, and they work in gardening, IT, administration and health awareness. In their own words SAMH ‘provides conditions for growth and positive mental well-being and works to create a safe place when people are experiencing distress.’

And indeed it was a remarkably peaceful place to wander around. I lingered particularly in the secluded seating areas, absorbing the atmosphere, picturing my characters huddled there, hiding there.

The Summer houseThe Sunken GardenThe RoundhouseI too felt safe and calm.

I rather wish I’d known about this little haven before I started probing my own depths for Inside of Me!

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The Costa Award goes to …

After last week’s experience I decided I needed to immerse myself in some quality writing to try to lift my own game. There on my tbr shelf was a Costa Award winner: The Hare with Amber Eyes: A Hidden Inheritance. (It won the Biography Award in 2010.) Good place to start then.

The Hare with Amber EyesThe author, Edmund de Waal, is a world renowned British artist specialising in ceramics – to call him a potter (as he does himself) is to diminish the heights to which he has risen. In 1994 he inherited from his great-uncle a collection of 264 miniature Japanese sculptures, netsuke: tiny ornaments which are ‘very rich, very simple, very tactile‘; ‘witty and ribald and slightly comic.’ (I recommend a quick pop across to Google to look at images of them.) He was curious to know who had touched and held them, and how the collection had managed to survive so long, so he set out on a search for a lost family and a lost time.

His research was impressive; meticulous and immensely detailed, and it took him seven years to write this family saga-cum-treasure hunt in which he unravels both the story of the netsuke and of the Ephrussi family, over five generations, and against the backdrop of world history.

During the nineteenth-century the Ephrussis were a banking dynasty in Paris and Vienna, as rich and respected as the Rothchilds, moving in the highest social circles; but by the end of World War II, this collection of netsuke hidden from the Nazis in Vienna, was all that remained of their vast empire. It’s a ‘vertiginous descent‘ for de Waal’s family from commissioning works of art to being commissioned; from owning famous paintings to writing about them. His account makes fascinating reading and beautifully captures the mores and magic of the times. He brings both an artist’s sensibilities and a descendant’s curiosity to the task.

Japan features significantly, of course – chiming with my love of Japanese gardens. Indeed on the very day I started reading this book we invested (I use the word advisedly!) in two more gorgeous Japanese acers for our own patch. I just love everything about them.

Japanese acers

The writing is so good I want to allow it to give you a flavour of the book through direct quotes. Here’s an early description of the Japanese people at a time when they were rarely seen in France:

… their skin is lightly bronzed, the beard rare; some of them have adopted the moustache … the mouth is large, conformed to open squarely, in the fashion of masks in Greek comedy; the cheekbones become round and the forehead protuberant on the oval of the face; the external angles of the small bridled eyes, but black and alive, with a piercing gaze, lift towards the temples. They are the Japanese.

The netsuke are central to the tale, visually appealing, endlessly different, collectors’ pieces, children’s playthings. But touch is also a vital part of the experience of admiring them. We see them being carried in pockets and hands and aprons, at once a comfort, a curiosity and a treasure:

The man who handles an object with indifferent fingers, with clumsy fingers, with fingers that do not envelope lovingly is a man who is not passionate about art.

NetsukeThey should always be displayed sympathetically:

Charles bought a black vitrine to put them in, wood polished like lacquer. it was taller than him, just over six foot high. You could see in through the glass door at the front and through the glass at the sides. A mirror at the back let the netsuke slide away into infinities of collecting. And they were all placed on green velvet. There are many subtle variations of colour in netsuke, all the colours of the ivory, the horn and the boxwood: cream, wax, nut-brown, gold in this field of dense dark green. … The vitrines … frame them, suspend them, tantalise through distance.

The author travels far and wide tracking the history of his inheritance – Japan, Austria, France, England, Ukraine, Russia, and he manages to evoke the spirit of these places with his poetic descriptions:

Vienna’s Ringstrasse ‘becomes a musical series of buildings, spaced with parks, punctuated by statues‘, with ‘a rhythm that suits its purpose,’ and a ‘space for progresses, for display’. De Waal realises that ‘I am going too fast, walking as if I had a destination, rather than a point of departure. I remember that this was the street that was made for the slower movement of the daily “Corso”, the ritualised stroll for society along the Kärntner Ring to meet and flirt and gossip and be seen’.

One of his dynastic houses in Austria is observed thus:

All I can see is marble: there is lots of marble. This doesn’t say enough. Everything is marble. Floor, stairs, walls of staircase, columns on staircase, ceiling over staircase, mouldings on ceilings of staircase. Turn left and I go up the family stairs, shallow marble steps. Turn right and I go into another entrance hall. I look down and the patriarch’s initials are set in the marble floor: JE (for Joachim Ephrussi) with a coronet above them. By the grand stairs are two torchères, taller than me. The steps go on and on, trippingly shallow. Black marble frames the huge double doors – black and gold – I push, and I enter the world of Ignace Ephrussi …

… everything gilded and ornate and encrusted and intricate and dripping wealth. No wonder de Waal couldn’t bear to have a portrait of Ignace’s wife Emilie hung on his wall at home, looking down on his domestic life in disbelief! She as so many of his predecessors came from a different stratum of society altogether. They feature in paintings, in newspaper reports, in books. They are mentioned in the same context as royalty. In one such volume where one of his ancestors appears as protagonist, de Waal’s comment was: it was ‘viscous with infatuation‘. How evocative is that!

But when it comes to the family members themselves, he has immersed himself in the detail and conjured up living breathing people. We take a swift intake of breath when great-grandfather Viktor’s elder brother elopes with his father’s Russian Jewish mistress. Of course he is instantly disinherited; Viktor suddenly becomes the reluctant heir to the family’s banking business. We feel his discomfort, so ill at ease in this totally unsuitable new role:

‘I think it might have been at around this point that Viktor developed his nervous tic of taking off his pince-nez and wiping his hand across his face from brow to chin, a reflex movement. He was clearing his mind, or arranging his public face. Or perhaps he was erasing his private face, catching it in his hand.’

Viktor’s wife, Emmy, twenty one years his junior, keeps the vitrine of netsuke in her dressing room. Why, her great-grandson wonders? Why not in one of the many public rooms where they might be admired by visitors as well as the family? The clue seems to lie in the intimacy of the room and the time she spent primping and preening in front of its great panels of mirror:

‘She changed three times a day – sometimes more. Putting on a hat to go to the races, with lots of little curls pinned one by one to the underside of the hat’s wide brim, took forty minutes. To put on the long embroidered ballgown with a hussar’s jacket, intricate with frogging, took for ever. There was dressing up for parties, for shopping, dinner, visiting, riding to the Prater and balls. Each hour in this dressing-room was a calibration of corset, dress, gloves and hat with the day, the shrugging-off of oneself and the lacing onto another. She has to be sewn onto some dresses, Anna, kneeling at her feet, producing thread, needle, thimble from the pocket of her apron. Emmy has furs, sable trimming to a hem, an arctic fox around her neck in one photograph, a six-foot stole of bear looped over a gown in another. An hour could pass with Anna fetching different gloves.’

But there’s another reason too. During the hour of dressing to go out in the evening, she allowed her children in to play with the precious netsuke. How they must have treasured those special minutes; at once close to their otherwise-remote and fractious mother, and also given this golden opportunity to caress the beautiful child-size carvings, re-order them, muddle them up to tease a sister, even listen to mother weaving stories about them!

De Waal includes many delightful personal touches which capture his own experiences as he travelled. Whilst in Vienna tracking the netsuke he’s walking just 400 yards from his paternal family mansion, the Palais Ephrussi, when he drops his glasses. They break, and he sees the irony: he’s looking at this monolith to his own past and he cannot see clearly!

DipladeniaThere’s even a little snippet that resonates particularly with me right now. The Czech poet, Rilke, is giving advice about accepting criticism to Emmy and Viktor’s daughter Elisabeth (de Waal’s grandmother) who is herself a poet and lawyer:

‘… it is not the gardener who is encouraging and caring who helps, but the one with the pruning shears and spade; the rebuke!’

How true!

It’s a fabulous book and lifted my spirits enormously in spite of its harrowing accounts of life in Austria at the time of the Nazi rule and the terrible persecutions and appropriations that led to the fall and poverty of the Ephrussi family. The shifty trips of the maid Anna carrying the little carvings to safety one by one in her apron pocket shine through, a triumph of hope over adversity.

What I didn’t know when I started reading this book was that, this very week, five years after the publication of The Hare with Amber Eyes, De Waal is about to publish his second book: The White Road, which is all about porcelain, the material he works with as a ceramicist. Hard to believe it will find the phenomenal success that The Hare with Amber Eyes did. Time will tell.




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Critical reading

A couple of months ago someone gave me a book with the comment: ‘I think this is your kind of thing.’

Well, I can see her point.

The said novel deals with or skirts around an impressive number of meaty issues: inherited diseases, fatal illness, teenage pregnancy, homosexuality, assisted death, parental loss and grief, infertility, infanticide, child abduction, cot death … My kind of subjects.

It has the strap line: It’s every mother’s worst nightmare … My kind of hook.

PaternityThe blurb on the back cover lets me know that it’s about tragedy striking a young mother, it’s a tear-jerker, and involves secrets and betrayal … My kind of storyline. In fact it’s about a baby with a rare recessive gene disorder and all that that implies: an angle I even used in one of my own novels, Paternity, some ten years ago. So, yes indeed, it does sound like my kind of reading.

The ChoiceWhat then was this book? The Choice by Susan Lewis.

I’ve been pegging away fairly relentlessly at my own writing and marketing and publicity tasks (yawn yawn) so I decided to take a break and a little light relief on Monday and Tuesday this week. The Choice was top of my tbr pile.

It kept me turning the pages certainly, I wanted to know how things panned out for Nikki and Spence and their baby, what dark secret Nikki’s parents were harbouring. But I was itching to edit it! I guess, constantly revising my own writing has made me ultra-critical and nitpicky. Throughout to book, my own editor’s advice was ringing in my ears: lose another third; cut out all the bits you’re especially proud of; is that character fully earning her keep?; what’s that secondary story line contributing? make sure all your facts tally  … Cut, cut, cut. Edit, edit, edit. She would have had me reduce that 532 pages to 252! But in truth Susan Lewis has published 30 books and established a resounding reputation, She needs no endorsement from me!

The book served my purpose, however. Thanks to a break away reading someone else’s work, I can return to my own writing with renewed enthusiasm.

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Dignifying death

QuestioningTomorrow the Assisted Dying Bill is back before the House of Commons yet again. I wonder if your views have changed since it was last debated.

It’s an age old question, isn’t it? 500 years before the birth of Christ, Euripides wrote: ‘I hate the men who would prolong their lives / By foods and drinks and charms of magic art / Perverting nature’s course to keep off death / They ought, when they no longer serve the land / To quit this life, and clear the way for youth.’

And here we are, 2600 years later, with an aging population, limited resources and vastly improved medical capability. Globally, the number of over-65s is expected to triple by 2050, with all that that implies. Of course, no politician will ever advocate that those who ‘no longer serve the land’ should choose suicide. But many aged and infirm people would choose death for themselves rather than indignity or slow decline or suffering. I’ve known many such – one just this week. And yet the current law prohibits assisting them towards that end. Is this a safeguard or a shackle?

During the Festival last month I went to a show which dealt with the quandary elderly folk can find themselves in: specifically not wanting to be kept alive, not wanting to be taken into hospital/care, not being listened to. In the drama, by the Jealous Whale Theatre, terminally ill Wendy’s grandson, Edmund, pleads with the authorities to respect her wishes; but the powers that be insist that there are ‘safeguarding’ issues and their hands are tied. In the end Edmund takes matters into his own hands, smothers his gran with a pillow, and then sits quietly waiting for the consequences. Cleverly performed in the intimacy of a ‘Wendy House’, it forced the audience into close proximity with the protagonists and their moral dilemmas. The play resurrected a lot of the old questions for me.

I'll See Myself Out, Thank YouEarlier this year I also read (and reviewed on this blog) ‘I’ll See Myself Out, Thank You Afterwards I went to the internet and looked at videos about people who have made a choice one way or the other. I was staggered by the number available, and had a rather depressing day watching them all, especially the touching scenes of farewell with loved ones. I don’t recommend it!

But I thought I’d give you the links to a selection of them just in case you want to select any to help you think through the arguments for yourself. I apologise for the imbalance; I’d have liked to be even handed, but far more pro assisted death than against seem to commit their views to video.

The last days, hours, minutes of a person’s life before they took the lethal dose, explaining their position and support for assisted suicide.

Cocktail of drugsCraig Ewart

Brittany Maynard

Man with AIDS in Oregon

Michelle Causse

Peter Smedley with Terry Pratchett attending

John Elliott

Susan Griffiths

Dr Donald Lowe

Gloria Taylor

People who wished they’d had this opportunity but hadn’t

Debbie Purdy

Convicted killer in Russia

Relatives grateful that their loved ones did have this chance of escape

Brother of an American

Mothers who wished to or did take the lives of their children.

Mother wanting to end life of two disabled adult children

Mother who did kill daughter

Patients lingering for years and years in an appalling state while everyone felt powerless to release them

Indian nurse sodomised and almost strangled

Several illustrative cases put together

Elderly viewpoints

The lengths friends and family would go to to support the settled wish of a patient

Two friends dying only one of whom was ill

Disabled people opposed to assisted suicide

Man with ALS

Disabled man

Disabled Alison Davis

(PS. Many years ago I was on a special committee with Alison Davies debating whether or not extremely small sick babies should be treated or allowed to die with dignity. We all found it very difficult to argue against Alison because it felt like devaluing her life. She’s still an ardent campaigner and a powerful voice decades later. And I’m still writing about the subject!)

Speaking of age, I want to add my own wee tribute to Her Majesty Queen Elizabeth II who yesterday became our longest ever reigning monarch. Watching this little old lady still performing her role with dignity, grace and an exemplary sense of duty at the age of 89 is both humbling and inspirational. God bless her.

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Festival brilliance

Well, that’s the Festival over for another year. 50,000 Fringe events; 800 free events. 2.3 million tickets issued, bringing in £3.8 million. Huge and spectacular. But as the last explosion of fireworks lit up the night sky on Monday watched by 250,000 people, my own reflections were good. I’ve enjoyed more variety this year and seen parts of the city’s underbelly I haven’t explored before, as well as the old familiar haunts of the Book Festival and main Fringe venues. And I’ve marvelled at the amazing talent gathered here in one small city.

I’ve tried this month to capture a flavour of each week for you. So, in that spirit, I’ll give you a glimpse into two events this week that were especially commendable in my view.

Blackwells Bookshop EdinburghEvery Thursday evening in August, Blackwell’s Bookshop put on an event – Writers at the Fringe – with 4/5 writers introducing their work. Unfortunately I was only free for the last one, but what a feast it was. All five speakers were witty, entertaining and interesting; all stuck to their 15 minutes; all gave tempting tasters of their writing; all were friendly and available afterwards. We had the full gamut from two debut authors to a Booker nominee!  In order of appearance: Michael Cannon (reading a short story about being belted as a child), Malachy Tallack (introducing his travel book about places on the same latitude as the Shetland Islands), Carol Fox (reading from her Memoirs of a Feminist Mother – she’s a lawyer and deliberately single mother), John Mackay (talking about his writing as both journalist and novelist), Andrew O’Hagan (reading from his latest book about an elderly lady with dementia and secrets). Hats off to Blackwells for a great line-up.

Austentatious characters Then on Friday I went to a show called Austentatious where six young actors performed a Jane Austen-lookalike comedy billed as completely improvised. As we queued we were asked to write down a fictitious name for an Austen novel; then one was picked out of a top hat on stage. The cast were accomplished actors and so funny. I presume they cooked up a rough outine for a plot beforehand, but what skill and quick-wittedness to ad lib as they did. And it was obvious the actors themselves were hugely entertained by the play they were creating. Not surprisingly they were a sell-out.

So that’s it for another year. But how fortunate am I to live on the doorstep of this cultural Mecca. As they say in the world of entertainment: If you aren’t in Edinburgh in August you might as well be dead!

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Critical input

Edinburgh floral clockSo, we’re into the last few days of the Festival here in Edinburgh. Next week, after a grand finale firework spectacular on the evening of the 31st, this seething, happening, nothing-surprises place will metamorphose back into our quiet and dignified capital.

Levitating figureBook Festival placard








Since I wrote my last post I’ve been to an opera, several more dramas, and a couple of book events – including one where Marion Coutts was speaking (I reviewed her book, The Iceberg, about the death of art critic Tom Lubbock a couple of posts ago) alongside award winning Belgian, Erwin Mortier, whose book, Stammered Songbook, recounts his mother’s descent into dementia. My workaday kind of topics. However, I must admit the most valuable thing I brought away from this session was what not to do on the platform!

Edinburgh Book Festiival 2015But hey, what of my own writing, you may well be thinking? Well, good news! It took another giant stride forward this week.

As you know, I’ve had really helpful feedback from experts on limited sections of the novel, but that only takes me so far; I also need critique from people looking at the whole story and from a general readers’ perspective. So six very insightful and well-read ladies belonging to a bookclub already known to me, have been reading the first full draft of Inside of Me, and on Tuesday I went along to hear their verdict. They were tremendously positive and encouraging but I picked up some very useful pointers for improvements.

Now my task is to think through the wealth of suggestions from all quarters and decide what to revise, what to delete, what to leave alone. And I’m confident the end result will be a better, stronger book than that first draft.

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Festival time

Chair in Chatlotte SquareSo far we’ve had a humorous take on Shakespeare (a World War II version of the classic play, All’s Well that Ends Well); an intriguing and delightful performance around the Tudor queens (by an American troupe!); a clever skit where Sherlock Holmes and his associate Watson, vie with each other to solve a crime in which Holmes himself is the supposed killer; an exploration of the issues of entrapment and abuse through a dark re-imagining of the infamous Grimm’s fairytale Rapunzel. Our teenage granddaughters, with their own cascades of beautiful hair, proving themselves observant, insightful critics and excellent company. Still to come: a wartime tear-jerker, a drama (paying homage to CS Lewis) exploring life and death decisions, a contemporary musical storytelling about the life of John the apostle viewed from his prison, a costumed Austentatious, and an adaptation of Pilgrim’s Progress. Good times.

But for me personally the highlight of my week was a special session at the Book Festival under the banner: Staying Well,  which incidentally also explored the concept of entrapment. Male suicide has increased significantly over the last twenty years and statistics for self harm in the UK are the highest in Europe. My current novel revolves around mental health issues, so this one: Stepping Away from the Edge, was a definite must.

Two of the three speakers have themselves suffered from severe depression. Debi Gliori is a writer-illustrator of children’s books and she has created a wonderful collection of pictures which portray how she feels while depressed – feelings which can’t be captured in words, she says. Her talk was illustrated with these magical drawings. Author Matt Haig has captured the horrors of severe mental illness in words. His book, Reasons to Stay Alive, is receiving widespread acclaim. In the Garden Theatre Tent, he also relied on words and his own palpable emotion to speak about his suicidal experiences. The third speaker was psychologist Rory O’Connor who heads a team at Glasgow University specialising in suicide, and his talk gave the stark statistics and facts and latest thinking about both self harm and suicide.

It was fantastic to see the importance given to mental illness at this international book event – an excellent line-up of speakers from both sides of the couch; an extra long slot (90 minutes instead of the usual 60); a large audience listening sympathetically and contributing sensitively; a team of specialists available afterwards in the Imagination Lab for anyone with specific issues or questions (a steady stream of people headed in that direction in spite of the late hour).

Festival city at night

As I stood admiring the magnificence of Edinburgh at night I couldn’t help but be glad that it was this city that had been the setting for another step towards equality between physical and mental illness.

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Arts, crafts and literature

August. Hard to believe but it’s Festival time in Edinburgh yet again.  Other commitments and limited time are forcing me to divide my allegiance roughly into three divisions: this week – arts and crafts; next week – drama; the following week – literature.

Wooden penSo this week I’ve visited exhibitions and craft fairs, and as ever been hugely impressed by the skilled hands and eyes which create fabulous works of art of so many types.  I couldn’t resist this beautifully turned wooden pen which is destined to become my signing-books tool from hereon in.

It seemed fitting then, in snatched odd moments, to read The Iceberg: a true-life memoir of an artistic family by Marion Coutts which I bought soon after it came out last year … an author for whom ‘August from its first to its last day has been like this, a designated disaster zone, dates crossed out on the calendar like grazes or scars and dotted with emergency notes scribbled in pen.

At the heart of the book, its context, its object and its subject, is art critic and bibliophile, Tom Lubbock. Buying books is his habit; reading them is his work and life. His house is stacked high with them. He can go with practised ease to any title, any quote. His living depends on speaking and writing. How cruel then that he should develop a grade four tumour in the area of the brain controlling speech and language, which will gradually but inexorably rob him of the ability to communicate verbally.

The IcebergVisual artist wife, Marion Coutts, on the other hand, finds she is unable to read since learning that her husband is terminally ill. Words have become irrelevant except insofar as Tom needs them. If he is searching she will find and feed the words back to him until they reach a perfect understanding. In time she becomes Tom’s mouth, although without his brain she feels something of a fraud.

Son, Ev, is a toddler, absorbing language and coordination; learning to understand the world at breathtaking speed. The accelerating forces in his life are a counterweight to the deterioration in his father’s condition. ‘Both are engaged in a work of beyond-the-brink resourcefulness, an improvisatory balancing act, an enforced making up as they go along.’

The family as a unit are also feeling their way in uncharted territory. ‘Tom’s is a high-speed disease with full, motorway pile-up repercussions. It does not pause to allow you to admire the view from anywhere, How many times do I think, Now we really are in trouble?’ And each time the family look back at all the preceding occasions when they’ve said exactly that and realise they seem manageable and benign in retrospect compared with the present calamity.

Marion charts Tom’s decline and her reactions and Ev’s development with an unvarnished and unflinching honesty. Short staccato sentences somehow capture the moments of panic, the heart-stopping dread, the breathless anticipation of what’s coming. Descriptions devoid of self-pity make the enormity all the more raw.

‘In the giant city State of the hospital, new doctors take up their posts in early August and the convulsion of their arrival continues until the end of the month when gone-away staff return from the beaches and rocks of France and Croatia to face the great wave of September’s fresh sick and maimed. Emails go unanswered, messages do not get passed on, dates for procedures come and go, Post-it notes go missing and questions float wistfully in the air. Meanwhile we, outside the institution, outside of everything, are well under way on our own steam. We howl along, all three of us together, with knocks and shocks and sudden up-speedings round curves skewed tight enough to spill us right out, and our bones and skin are broken and torn but there is always more bones and skin to be mangled. Like a miraculous Catholic bloody endurance sport, there is always more. In the space of three weeks, between us we have had hospital stays, fits, diarrhoea, speech loss, tonsillitis, swollen feet, mobility loss, demoralisation, ambulances, glue ear and holidays – everything happens always and forever, on holiday. But we are not tourists. We travel tightly baggaged with our lives. There is nothing left at home.’

Her very writing style, confident and semi-detached and analytical, sets her apart as in control; but the half-buried casual confessions reveal her vulnerability. As she finds: ‘The weak are held close and given tea. They are hugged and warmed by the fire. The strong are revered but kept at a distance.’

Published last year, The Iceberg has been shortlisted for three major literary prizes and longlisted for another one. Wow! Tom, familiar with the literary world, would have been proud of his wife’s achievement. I, for my part, found some aspects of the book irritating, some bewildering, but in many other ways it echoed my own account of a slow death in Right to Die; a kind of real-life authentication of my fiction.

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Under construction

Almost completed houseWhen I sent off my draft novel for expert critique a few weeks ago, in my mind it was rather like this house – pretty much ready apart from some fine tweaking. (I’ve watched this estate being built as I pounded past it each morning on my daily constitutional.) Not quite turf-laid-and-curtains-at-the-windows ready, but basically sound.




Scaffolding and reconstruction of house

This week, though, it looks more like this.


Scaffolding back, new supplies coming in, clear signs of restructuring. From inside, the sound of drilling, plumbing, wiring, painting, glazing. Yep, I’ve been hard at work revising and editing: taking passages out, putting new chapters in: tightening some sections up, allowing others to breathe: tweaking semi-colons and parentheses; erasing adverbs and adjectives.

Heavy diggersThere’s even been some basic digging to strengthen the foundations. A new introduction for one of the key narrators, a different pathway for the plot resolution. I’m even contemplating adding a prologue!

To the runner passing by it might well feel like several steps backwards, but the architect and chief builder can envisage the distinct improvements being added: porch, conservatory, double garage, pond …



For Inside of Me this is all good news. The end result will be a more appealing, readable and desirable commodity … I hope! And that’s the whole point of this exercise at this stage. I’m hugely indebted to the ‘surveyors’ who kindly drew my attention to potential flaws and then left me to do what I think necessary. Thanks, folks – you know who you are!

NB: Before readers of this blog deluge me with comments about the flaws in this little analogy, I know, I know, I know! Of course the architects should get it right first time around, and no construction company worth their salt would operate in this slovenly fashion, but they’re building houses to tried and tested rules and plans. Estates like this are mushrooming everywhere. Creative writing, fiction, has no blueprint and every novel is unique and must stand alone amidst thousands upon thousands of other books. None of you will post a review about the house; many of you might post one about my novel! By then it’s too late to revise the text to gain that extra star. And once it’s published there is no second chance to sneak in and correct the faulty wiring or double glazing.



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