Hazel McHaffie

Right to Die

Is it ever right to take a life?

With all the events marking 75 years since D-Day and the Battle of Normandy, and other war-related events, my mind has been travelling the well-worn path of … is it ever justifiable to take a life? And is there a kind of life that’s worse than death?

Then for the last two Thursdays those questions have swirled again, watching Susanna Reid interviewing inmates awaiting execution in maximum security prisons in the USA for her series: Death Row: Countdown to Execution. The state of Texas supports the death penalty, and the locals appear to take it in their stride, but Susanna found it unsettling just being in the town with the execution chamber, to know exactly when a human being was being walked to that gurney, strapped down, given that lethal shot of Pentobarbital. She wanted to know exactly what was happening, how everyone felt – the convicted man, the family, the witnesses, the townspeople. She’d met these men briefly in the last few days of their lives, and in spite of their criminal backgrounds, it clearly troubled her.

Many inmates are held on Death Row for decades (the average 12 years) and massive amounts of money are spent on appeals even up to the eleventh hour. Fewer than 2% are exonerated but the process has to be gone through, seeking additional years or days of life if nothing else. For those who are the victims of the crimes (and that often includes the family of the convicted man) the death brings a form of closure; but opponents believe that society should not sink to their level. After all, as they said, we don’t rape rapists, we don’t steal from burglars; why should we kill murderers? ‘We should be better than that.

And against all this my mind goes to my own area of particular interest, viz the issues around assisted death for people on a different kind of trajectory: those with incurable, degenerative illnesses; trapped for years in many cases, with no hope of a reprieve. Their own kind of death row; their own kind of hell. And our society – too humane to kill convicts – is also unwilling to countenance patients ending their own lives when the pain, the suffering, the indignity, are intolerable. Is this justice? Is this fair? Is it humane? As Scottish former Rugby Union player Doddie Weir (who has Motor Neuron Disease himself and has just buried his mother after a fairly short experience of cancer) said this week: Being a farming boy, when there is no hope with the animals you are able to put them out of their misery, but with humans it is not allowed. It does not seem fair sometimes.

So many truly difficult questions; so many nuances and valid perspectives. I studied this topic in depth before writing Right to Die, published in 2008. I’ve repeatedly returned to it since. Eleven years on we’re no further forward in terms of the law. Assisted suicide is still illegal; doctors who help a person to die still face a jail sentence of up to 14 years. However, public opinion has swung much more towards some provision to help people caught up in these intolerable situations, helped in no small measure by the brave souls who have shared their harrowing experiences openly. Then in March this year, the Royal College of Physicians declared neutrality on the subject. And this week the Royal College of General Practitioners has said it will consult its 53,000 members on whether the time has come to drop their opposition to assisted dying. The wheels grind oh so slowly, but they do seem to be turning.

What do you think?

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Baroness Mary Warnock

It’s almost eleven years since I shared a platform with Baroness Mary Warnock, but I’ve never forgotten it. We’d both just published books about assisted dying: hers, An Easeful Death (with Dr Elisabeth MacDonald); mine, Right to Die, and we were appearing together at the Edinburgh International Book Festival.

She was already very well known, an established and influential figure in the world of philosophy, and author of The Warnock Report on Human Fertility and Embryology, an outspoken and at times rather intimidating person, who had strong opinions of her own. I recall she wasn’t too impressed when I questioned her statement that assisted death was not killing, and dismissed my quibble out of hand. She was sitting in her philosopher’s ivory tower well away from human reality; I was speaking from the viewpoint of a clinician at the sharp end.

Though known for her sharp mind and fearless debating, in great demand for committee work, she was widely criticised for being an ‘instant expert’, for having no truck with those who held strong immovable moral principles, for voicing shockingly derogatory comments based on social class and personal prejudice. Her certainty that she was always right stemmed from her childhood and sense of personal superiority. ‘In my mother’s family,‘ she said, ‘we were brought up to believe we were the best; there was simply no doubt about it and that sort of conviction resists evidence.’ I confess I caved in more than once in the face of her dogmatic assertions, even though in my heart of hearts I disagreed strongly. Somehow her reputation and self-confidence left scant room for challenge, especially from people as far down the food-chain as me!

One of the most outrageous statements she made was, ‘If you’re demented, you’re wasting people’s lives – your family’s lives – and you’re wasting the resources of the National Health Service’. She advocated encouraging such people to end their own lives to avoid being ‘a burden‘. To my shame I never did summon the courage to take her to task on that, though I’ve spent years working alongside people with dementia and wholeheartedly supporting efforts to enrich rather than end their lives.

Having said all that, I was touched by her generosity in endorsing my own writing. Emboldened by our brief acquaintance and pleasant exchanges, I rather trepidatiously sent her the draft of my novel, Saving Sebastian, which overlapped with her interest in genetics and embryology, and she was kind enough to endorse it warmly:
‘Problems in medical ethics are not just for doctors but for everyone,’ she wrote. ‘Hazel McHaffie has found a way to bring them before a wide public. You are gripped from the very beginning. but as you turn the pages, you are compelled to think about the issues. It is an excellent formula.’
I forgave her much!

She was made a DBE in 1984, a life peer in 1985, a Companion of Honour in 2017. The last time I saw her in the flesh she was a much diminished figure, so hard of hearing she missed much of what was said, and at times her comments fell like stones into a pond; sad to witness. She died this week, on March 20, aged 94, after a fall, a richly decorated though hugely controversial figure. Perhaps, in the world of medical ethics at least, we need such characters to provoke discussion and sharpen our own opinions.

 

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Future possibilities

There will never be a shortage of subjects for me to write about! I lose tracks of scientific breakthroughs and medical marvels. And today, given the breadth and range of material available, I’m not going to even attempt to link everything I mention to scientific papers – Google the key words and you’ll get the information if you’re interested.

When HIV/AIDS first came to our attention in the 80s there were doomsday predictions of biblical plague proportions and real-life devastating statistics. I was a researcher at the time and saw it, wrote about it, first hand. Then came huge public awareness campaigns … followed by the development of anti-retroviral wonder drugs … then combination therapies, that could hold the disease at bay. Now here we are, with stories of stem cell donations from people with ‘natural immunity’ rendering patients free from the virus. You could weave a pretty complex plot with that one! And in 2019 my file marked HIV/AIDS looks completely different from the slim wallet of 30 years ago.

Inside of Me coverThen there’s the transgender issue. Wow! So many dimensions. About young children wanting to transition. About people wanting to reverse the process; the irreversibility of some therapies. About misleading statistics. Eebie jeebie – how crazily tortuous a plot could you construct in that area. The imagination goes into overdrive. Makes my little sally into that world in Inside of Me, pale into banality.

It’s 41 years since the first test-tube baby, Louise Brown, was created, and infertility was very much top of my pile when it came to choosing subjects for my set of novels. Now despite widespread opposition, criticism, vilification, stigma, as many as 8 million babies have been born by IVF. And the endless thirst for knowledge and understanding, coupled with a bottomless pit of compassion, drives researchers and clinicians in this area to seek more and more solutions to the problems couples have in conceiving, or avoiding perpetuating deadly genetic diseases. There’s mileage for several more books to follow on from Paternity, Double Trouble and Saving Sebastian. Did you know, for example, that the success rate for assisted fertility is way way higher (50%) than for natural conception (25%) … plenty of scope to work up a story-line there, huh? Imagine a gang of 35-year-old career girls going to the freezer to select artificially-created sperm … or genetically screened/modified embryos … ticking selection boxes along the way for green eyes, athletic ability, fiery temperament …? Endless possibilities!

The statistics on abortion reflect changes in society’s mores and values; programmes like Call the Midwife have increased public awareness of how things have developed in a generation. Add in dating apps, modern career paths, cohabitation, social expectation, fertility statistics … I feel an historical reflective story coming on! I well remember, in the 70s/80s soon after the 1967 Abortion Act was introduced, women coming in for a second, perhaps even third, abortion were looked upon askance. Recent Government figures have highlighted that of almost 68000 abortions carried out in 2017, 1049 were undergoing their fifth abortion and 72 their ninth! And there’s a story behind every one.

Then there’s the horrific topic of female genital mutation … don’t get me started! The recent story of the first person to be convicted in Britain briefly reported in the national press was shocking enough – the little girl was three years old; the mother cut the child herself in her London home; indecent images and animal pornography were involved. I absolutely couldn’t go there with fiction. But … should our collective conscience be prodded?

Resources, caps on the cost of medical and social care … I’m somewhat allergic to numbers, but reading about the human consequences of budgetary restrictions brings out the indignant in me. And might just compel me to write about it if I’m around long enough to get to that file.

Even the topic of assisted dying – a recurring hot potato – has subtly changed since I published my novel on the subject, Right to Die, eleven years ago. The issue’s been described by lawyers for the Royal College of Physicians as ‘one of the most controversial and morally contentious issues in medicine’, but ongoing polls of both medical and public opinion show a definite move towards accepting the need for some change. This might be simply taking a neutral professional stand as against opposing it; or a swing towards legalising some form of assisted suicide in the UK. A novel today could look very different.

Yep, I’m endlessly adding to the possibilities in my files as medicine and science reveal more and more, and society’s tolerances and expectations change. This is just a superficial skim. Anyone out there keen to pick up the gauntlet?

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A lifelong apprenticeship

Wow! I’ve had quite a jolt.

Picture if you will …

… the Canary Islands: brilliant sunshine, millions of years of volcanic activity, vibrant flora, a whistling language, an excellent health service but serious economic struggles …

Fascinating and a real get-away-from-it-all break. But, in the back of my mind, lurks the thought that I have an author appearance shortly after I get back to the UK. Hmm. Best tactic? Jot down a few ideas in idle moments, on the train/plane/ferry, let the topic (‘Well-being’) simmer on the old back burner, but concentrate on the Canarian experience.

Overall strategy? Take the audience up to the bedside of some of my characters, let them listen to the conversations, enter into the minds, of people who are facing challenging, even tragic, choices. Give them a chance to consider the different options themselves. Maybe ruffle their sense of well-being a tiny tad …?

Saving SebastianHow would you feel having a four-year-old dying in front of you, I wonder? Would you agree to create another baby specifically to try to save his life, knowing that many perfectly healthy embryos will probably be destroyed in the process, that this new child might have the same fatal blood disorder too, that it might all be in vain?

How would you react to being told you have a terrible degenerative disease which will certainly destroy your body inch by inch, killing you before you reach your 42nd birthday, your brain fully aware of every ghastly step?

You get the idea.

It’s a long time since I wrote – or indeed read – my earliest books, so I quickly realise I need a crash course on McHaffie’s medical ethical novels. Happily I have several on my Kindle, so I immediately start to update myself. And that’s when I make a sobering discovery. I want to edit them! Hey, why did I write this that way?! But of course, I can’t change it; not now they’re published. Any more than I could change the experience I had of Tenerife, or La Palma, or La Gomera, once the ferry drew away from each in turn.

Why should that surprise me?  It shouldn’t. I’ve moved on, honed certain skills, developed my craft, progressed – hopefully! As Ian Rankin once said; the reason we keep writing is, we’re always trying to improve, to write the perfect story. It’s a lifetime’s apprenticeship.

And each time I embark on a new book, the older ones recede in my mind, much as the islands become hazy and less defined as the ferry powers off across the Atlantic.

New horizons beckon. I’m already scanning the ocean for new excitement, noticing the changes in colour and swell, watching the other passengers, wondering about their lives … scavenging new ideas, creating new connections, forging a new pathway in this fathomless deep that is our world/imagination.

So, it’s been a salutary experience, re-visiting my own earlier novels. I’ve had to forgive myself for the failures and infelicities of the past, cling on to the better aspects, and extract useful messages that might provoke discussion and pique interest when I’m in that other life, in that Scottish library, talking to an audience about ‘Well-being’ and the writing life.

OK, next step? Inject some humour! Don’t want them leaving in tears, never wanting to go to a library again, do we?! And there’s planty to amuse in my books … a fabulous train conductor on the Aberdeen-Penzance Cross-Country run; a minister with holey/holy socks and an all-embracing love; a lab technician who quotes Oscar Wilde to excellent effect … I’m sure they’ll come to my aid. But first, let’s savour every experience these amazing islands have to offer. No need for regret on that score.

 

 

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Conversations on Dying

‘And that’s the reality of all human lives when it comes down to it, isn’t it? That we choose the narrative we write with our lives every day. By the decisions we make, by the ways we chose to spend our days, we craft the lives we live in, our story.’

Dr Larry Librach lived a rich life, told an impressive story.

‘If you had to imagine an archetypal favourite uncle, you’d probably come up with someone like Larry. His eyes crinkle because a smile is his face’s default setting. His trademark moustache, which has been grey since I first knew him, is always neatly groomed, but it’s constantly being worked – curling upward at each end, He still has a full head of hair, despite his sixty-six years, and it always gives the impression that it’s on the cusp of being unruly – that it might any second explode into an Eisteinian mop.’

Dr Librach? … Who? … He was a palliative care physician in North America, co-founder and director of the Temmy Latner Centre for Palliative Care, one of the largest such centres in the world. He dedicated his working years, his distinguished career, to helping his patients navigate their final journeys, to teaching others to truly understand and provide empathy, sensitivity and real support. He readily agreed to assist journalist and writer, Phil Dwyer; to be interviewed, to be shadowed as he went about his work caring for dying patients in the community. Here was an opportunity to teach a far wider circle of people than those in his immediate circle of students and colleagues. To improve care everywhere.

It was a body blow to Dwyer when he learned that Larry himself had been diagnosed with terminal pancreatic cancer. But such was the generosity of the doctor (and his wife) that Larry continued the interviews, now sharing his own personal experience of dying at every stage, to give an even more intimate insight into what it feels like to walk this painful path. One more teaching opportunity – perhaps the most powerful. One more chance to tell those who would come after him – patient, relative, friend, physician – what helps, what hurts, how care could be made better.

‘It wasn’t the cancer that crafted Larry’s narrative, but the choices he made after he knew about it. Larry chose to die, as he had lived, with purpose. It was only that, only his intent, that gave his death meaning. But it was enough. More than enough.’

Conversations on Dying is the book that came out of this joint venture. It’s a beautifully hopeful, energised story of love and commitment, of family and friendship, and a seemingly bottomless well of compassion. Larry somehow manages to combine an honest appraisal of the emotion and pain of his situation, with a rather unnervingly detached scientific perspective and analysis, even when things seem bleak and overwhelming.

Phil Dwyer too is impressive. His intimate connection with his co-worker is plain to see, his own grief and pain raw, and made all the more poignant because he is simultaneously reliving the death of his own elder brother three years before from throat cancer. He compares the two experiences, learning, understanding, mourning … and with new illumination comes new sorrow. But in spite of the personal cost he manages to write with elegance, wisdom and sensitivity, creating a narrative both moving and intensely readable.

No detail is too small, no nuance missed. His brother John had craved a Chelsea bun and a pint of beer; the mass in his throat prevented him ingesting either.

‘These are the things we lose. Everyday things. Things we’ve experienced thousands of times without pausing to savour them. These are the things that become important when they’re taken away from us.’

Phil (in Canada) and John (in the UK) were continents apart. He lived in dread of that  unexpected family phonecall from a foreign land, the terror, the immediate imaginings of death or disaster.

Mayhem lurks in that transatlantic static
‘… hollowness would open up as I lifted the handset’

And finally …

‘When she [his sister] did [speak] it was in a voice that had been washed clean of every bright note, a flat, emotionless tone from the country of the mourning. She couldn’t even say the words. All she could say was “it’s happened”.’

It might be supposed that Dr Librach’s own experience would be one of gold standard care. After all he was famous, it was he who taught his personal physicians how to care. But no, he too was subjected to thoughtlessness, insensitivity, even negligence at times. A receptionist chose to file her nails rather than give him thirty seconds of her time to supply a document he needed. Dr X completely fouled up Larry’s treatment for jaundice. But he faced the good, the bad and the ugly equally with courage and clear sightedness. He listed the deficiencies of current provision in his own discipline boldly and wisely:

  • Liaising between parts of the system is poor; appointments are not dovetailed, making impossible demands on dying people.
  • There’s too much centring on disease not on the person and family; insufficient true caring; not enough team spirit; too little respect for the patient’s time; too little empathy; ineffective information exchange; too little welcome.
  • The government is all about performance indicators; healthcare administrators are more into spreadsheets, too far from the bedside.
  • Not everyone with cancer needs to have treatment; quality of life as opposed to quantity is important. Chemotherapy can kill the elderly as well as cripple the health care system. Why try to save the dying at all costs? What for?

Ring any bells?

In the face of ‘the gut shreddingness of the emotions that tear into us at such a time’ there are certain key things that matter. Typically he gets to the very kernel of what counts in the end:

  • being respected and cared for as an individual
  • being heard
  • being free to ‘let it all hang out’, sharing the emotions, not bottling things up
  • keeping communication lines open
  • finding your own meaning and value in life

Simple things. Human, compassionate, loving things.

I’ve written and talked about the issues around dying myself for many many years (ad nauseam my family would say!); I’ve read countless books on the subject; I’ve even written a novel about assisted dying. But this one, Conversations on Dying, is unique in my experience. Its candid and energetic approach, the intimacy of the collaborators with each other and with death, their courage and generosity in allowing us to witness their raw emotion and vulnerability at close quarters, their clear summary of the issues that matter, offer us at once an enormous privilege and a lesson for life. I salute them both.

And thank you, Amanda, for recognising that this is my kind of reading, and for your generous gift of this special book. I shall treasure it.

(NB. You may like to know that radio broadcaster Eddie Mair has recently recorded a series of talks with journalist Steve Hewlett – who died a couple of weeks ago – about his experience of terminal oesophageal cancer. They cover similar ground.)
 

 

 

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Real life ethical challenges – alive and well

Wow! The year has begun with a bang as far as medical ethics is concerned. Lots to challenge us.

Just in one day this week we had the news that …

Every secondary school in England is to be offered training to help them identify and support children who are suffering from mental illness – a government-led initiative. Mrs May describes it as a first step in a plan to transform the way we deal with mental health in this country. There’s a long way to go but this is at least a concrete measure. Is it the right one, d’you think?

A terminally ill man with Motor Neurone Disease who fears becoming entombed in his own body has asked judges to allow doctors to prescribe a lethal dose of drugs for him without fear of prosecution. Sound familiar? Well, actually it’s the first case of its kind for 3 years would you believe – surprised me to learn that too. Should he be allowed this option? Is the UK ready for change? Where would it lead?

There’s been a rise in demand for live-in au pairs for elderly folk. It’s an attractive alternative for some to going into residential care. OK, I’m listening! And it comes amidst the controversies over standards in care homes and the soaring costs involved. But of course it comes at a price. And it inevitably excludes some people. Will it take off? Should it?

Viscount and Lady Weymouth have become the first members of the British aristocracy to have a baby carried and delivered by a surrogate mother. Apparently Emma Weymouth has a rare condition which puts her at high risk of having a stroke during labour; she suffered a brain haemorrhage and an endocrine disorder during her first pregnancy. This was deemed the safest way for them to ‘complete’ their family. But of course it has higher significance to an ancient lineage like the Longleat Bath family than to the average couple. Any thoughts?

After lengthy wrangling, judges have decided that a Gulf War veteran, policeman, and father of one, aged just 43, should be taken off life support and allowed to die, in line with his expressed wishes. His wife sees it as a final act of love. Others decry it as the thin end of the wedge to denying the sacredness of life. Where do you stand?

As I’ve said before, I shall never run out of material for my writing. And this ongoing interest in my subject spurs me on.

NEWSFLASH: Yesterday I completed the first draft of novel number 10. Wahey! Drum roll, please. It’s about a professor of Medical Ethics going on a train journey from Aberdeen to Penzance to deal with a crisis in her own family, but encountering all sorts of challenges along the way. The most fun of all my books to write so far, but I still cried at one point!

 

 

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Ethical issues for everyone

I’ve been taking stock of where I am in my writing career of late and I thought I’d share with you a couple of noteworthy things from this appraisal.

The first relates to the prevalence of my subject matter.

To one side of my desk I have three large boxes full of folders. Each file contains material related to topics I’m interested in; each one a potential novel. (Yep, you’ve got the picture. I’m obsessive. Nothing newsworthy there.) But some of these files are very thick; one topic even runs to two volumes. And reviewing the contents, I’m reminded of how often I cut things out of the daily papers to slip into the said folders. Deduction? My kind of subjects must help sell newspapers; ordinary people must be interested in them.

Alert to this, I did a mini survey. Result? Just on one day this week there was something on
– mental illness (OCD and depression and self harming all dealt with)
– organ transplantation (growing human organs inside other mammals)
– assisted suicide (the BMA’s position: should doctors to be free to follow their consciences?)
– body image and identity (eating disorders, celebrities’ experiences)
– balance of risks and benefits (related to heart disease)
– care of the elderly and those with dementia
All on just one day in one newspaper.

Right to DieThe second point relates to the currency of my subject matter.

When I start planning a new book, I do try to imagine life a bit ahead of present understanding so that when it comes out it’s still relevant and topical, but I’ve been surprised at how much these issues remain current. Take assisted dying, for instance. My novel, Right to Die, was published in 2008. In the eight years since then parliament has revisited the issue repeatedly; professional bodies have regularly debated the pros and cons; a considerable number of high profile cases have come to public attention; campaigns have been fought. It’s still a hot potato and it doesn’t show any sign of cooling any time soon.

Remember-RememberThen there’s dementia. Remember Remember came out in 2010, but the ethical dilemmas it explores are as thorny today as they were then. What’s more, the number of families grappling with them is growing as the human lifespan increases; more and more individuals are exercised by the questions.

I’ve been working on an outline for the tenth and eleventh books recently and I’m staggered by the thickness of the folders on those two topics. I’m having to write notes of notes, and lists of lists, to sort out the wealth of facts and the evolution of thinking and knowledge, in order to establish what arguments and counter-arguments obtain today, and to start developing a coherent plot-line. When I first set out on my pathway to becoming a novelist, a very highly regarded agent advised me to leave my academic background behind me. I knew what he meant: the meticulous research mustn’t show through in the finished product. However, from my point of view, those decades as an university researcher stand me in good stead when it comes to delving deep, sifting and sorting facts, and understanding science.

Of course, I’m well aware that at some point I shall have to put away my writing pen, my days as an author done. But it certainly won’t be because I’ve run out of subject matter! Medical ethics is very much alive and thriving.

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Pause for reflection

There’s nothing quite like a spot of immobility to challenge one’s priorities. So much of who we are is wrapped up in what we do. If we can’t do, what then?

A rather nasty early morning fall on black ice (who ever suggested pre-breakfast power walking was good for people of my age in winter time?!) and the equivalent of whiplash injury in my lower spine, have curtailed my movements rather too effectively. Please don’t misunderstand me – this is no cry for sympathy; I’ve no one but myself to blame. No one forced me. But the effect is that I’ve been doing rather too much thinking for my own mental well being. (Well, truth be told, I was always pretty borderline.)

Regardless of the accident, March was always going to be a weird time, a kind of cold turkey, waiting for the latest novel to come off the production line. No more tweaking. No more proof reading. What is, is. And most ‘next-jobs’ can’t begin until the book is actually available – next week!

It’s surprisingly hard to concentrate when you’re in constant pain – or maybe I’m just a terrible wimp. And everything feels cack-handed. Imagine said author draped over an ironing board to write, read, eat, and you have a glimmering of the scenario chez moi. Just not being able to sit down becomes remarkably wearisome. Life gets reduced to essentials.

Unfortunately ‘essentials’ includes a lot of travel right now – Ireland, Cornwall, Midlands, London, all within the space of three weeks. ‘Keep getting out of the vehicle and walking around‘, advises my expert osteopath. ‘Try reclining the seat and lying on your side.‘ Hmm. I guess it depends on the vehicle, and who’s driving, and how soon you want to get there.

Right to DieSo, reflections it is then.

The trip to Galway in Ireland was for an event about dying – both natural and assisted. I was invited on the strength of my novel, Right to Die, and my background in ethics. Eire is working on a parliamentary bill on this subject right now so it’s a hot topic over there; it was an honour to be included. And I felt heartened. After eight years in print my little book is still borrowed from libraries large and small, and the topic is still relevant and controversial,. All very encouraging.

Question is, encouraging enough to keep doing what I do? Hmm. Let’s see.

Things about my work I love and want to retain in my life:
Reading
Writing
Blogging
Editing and revising
Talking about my books/pet subjects
Entering into the debate
Exploring new topics
Good reviews
Hearing from satisfied readers

Things I’m less keen on:
Promotion
Marketing
Tax returns!

Inside of Me coverAhh. The tally says it all. I might revisit this once Inside of Me is on the shelves and my back restored. Who knows, I might even  reinvent myself and go for those four inch crimson stilettos!

 

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Peeling back the gilt of Christmas

Nativity carouselAt this time of year it somehow seems extra tragic when bad things happen to good people. Aside from the global crises afflicting our world and unravelling before our eyes in our living rooms, I personally have a number of friends currently facing serious illness, impending death, sudden bereavement, and yet it must seem like everyone around them is caught up in trivia and pleasure, festivities and excess – in reality of course, who knows how many others are only hiding stresses and problems from public consumption?

Mrs Santa straw figureIt’s in this spirit that my mind has been wandering over the huge dilemmas facing different families; what would I choose in their circumstances? how would I cope?

Metropolitan police officer Heidi Loughlin, 33, discovered she had an aggressive form of breast cancer the day after finding out she was pregnant with her third child. She decided not to have a termination of the pregnancy but to delay treatment until after the birth. Her condition became so serious however that her baby girl was delivered by Caesarean Section on Friday, 12 weeks early, and Heidi has been given a short time to recover from the operation before starting powerful chemotherapy next week. She faces a pretty gruelling Christmas, but is determinedly looking forward to March when she will get her baby girl home to her two brothers. She has risked her life to give her daughter a chance and says she has no regrets; it was all worth it. What would I have chosen in this situation, I wonder? What would you?

Then there’s fireman Patrick Hardison. He entered a burning house in Mississippi; the roof collapsed on him leaving him with severely disfiguring burns across his face, head, neck and upper torso. Think for a moment of the pain of a small burn from an oven shelf, a hot iron … Multiply that by ten trillion. Even after 70 operations he was still so terribly mutilated (see pictures here if you can cope with them) that he would only go out heavily disguised. What kind of Christmases has he endured, I wonder? He recently underwent the most extensive face transplant ever performed. Factor in not only the excruciating pain at every stage but the risks … would I have been courageous enough to want to go on living? Would you?Antique Santa candle holder

Within the last two months, two transgender women have been found dead in their cells in all-male prisons: 21 year old Vikki Thompson in November, and 38 year old Joanne Latham in December. No more Christmases for them. Many difficult questions present themselves where transgender people are concerned and there is generally much greater sensitivity to their issues, but what about when they commit crimes, serious offences that land them in prison? Not only their own welfare is at stake but that of their fellow prisoners. Where would you have housed these two? Nearly 150,000 people signed a petition to house a third person, 26 year old Tara Hudson, in a female institution even though she had been convicted of assault. Would you have signed it?

A 50 year old woman, mother of three, is so determined not to grow old and ‘lose her sparkle’ that she has refused to undergo kidney dialysis. Her kidneys were seriously damaged when she took an overdose following a diagnosis of breast cancer. For years her life style has been chaotic to say the least, and one wonders, what is Christmas like in that household? Whatever, the Hospital Trust responsible for her care appealed to the courts to have treatment imposed against her wishes. But a senior judge has upheld her right to an autonomous choice to die. Was he right to do so, do you think?

I’m merely scratching the surface by way of illustration. Remember all the cases we’ve heard about recently – various scandals around abortions carried out on the grounds of gender alone; teenagers killing themselves because they’re obsessed with losing weight; all the dire warnings about how to deal with declining fertility; the consequences of a simple blood test at 18 weeks pregnancy that allows screening for thousands of genetic conditions  … the list goes on and on. My files are bulging with clippings and articles.

Scandinavian figuresSo at this time of celebration and joy, let’s spare a thought for families caught up in tragic circumstances, and the courageous souls who try to support and guide them. May they find wisdom, courage and strength. And I wish all visitors to this blog peace as you prepare for the festive season whatever it means to you.

 

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Cursed inheritance

As I promised last week, good news this time!

Eight or nine years ago I chose Motor Neurone Disease for the degenerative condition journalist Adam O’Neill is battling with in my novel, Right to Die; Right to Diea disease that will strike right at the heart of his being and his aspirations. So I was fascinated to find Lisa Genova chose Huntington’s Disease for her tough Boston cop Joe O’Brien in Inside the O’Briens, a disease that stops his career dead in its tracks and forces him to face the horrors of genetic inheritance.

Both MND and HD are frightening, crippling, fatal conditions that rob the person of control and dignity. Getting inside the mind and body of either an Adam or a Joe is very scary stuff. So, having been there myself, I was extra curious to see how someone else tackled the ethical minefields and personal challenges associated with such a scenario; especially someone with Genova’s credentials.

This time she has inserted occasional tracts of medical explanation about the condition into her novel to inform the reader, positioning herself as a scientist; but for me her real strength lies in her ability to describe the illness from the inside. She puts the humanity into the science, compassion into the clinical facts. The insidious onset before policeman Joe even suspects the truth. The sudden weird and inexplicable bursts of anger. An inability to process instructions. Finding it impossible to keep legs and feet still on parade … in police exercises … in a restaurant. And then, once he’s diagnosed, the inexorable progression. The involuntary indiscriminate throws – punches, food, cutting words – that label him as drunk, deranged or dangerous to passers by. The red rages that cause his wife Rosie’s black eyes, terrible destruction in the walls of the family home. The fear that won’t let him ever hold his grandson. The depression that makes him constantly check his gun is still loaded and primed.

We peer into his past when Joe recalls his mother’s antsy wild black eyes as she lay in a mental institution for years; condemned to be known as an incurable drunk. The questions hitting him now nearly forty years later. How could she have remained an alcoholic in the hospital all those years? Why had his father stopped taking Joe and his sister to visit her? Why had his strong dad wept like a baby? What lessons did she actually teach him?

The author powerfully captures the brutal reality through the eyes of the rest of the family too:

Inside the O'Briens‘Huntington’s isn’t the absence of moving, thinking, and feeling. This disease is not a transcendental state of bliss. It’s a complete freak show – ugly, constant, unproductive movements, uncontrollable rage, unpredictable paranoia, obsessive thinking.’

We see the dawning terror in his wife’s eyes. Her silences. Her withdrawals. Her desperate stroking of the crucifix round her neck, the beads of her rosary. Her binning of the symbols of her ingrained Catholic faith.

Then there’s the terrible implications for their four beloved offspring. Vegan yoga teacher, Katie, living life in ‘peace, health and harmony’. Ballerina Meghan, limbs and body and mind all supple, beautiful, desirable. Firefighter JJ, taking his health and fitness for granted, using it to save others; preparing for imminent parenthood with his wife Colleen. Rebel Patrick, sewing his wild oats liberally, experimenting with life. Each one of them carrying a fifty percent chance of harbouring this cursed disease. Nothing can change that fact. Nothing can halt, slow or reverse this terrible thing. Joe, their father, is powerless to protect them. Indeed it was he, their supposed protector, who handed on the poisoned chalice in the first place. And now he must stand on the sidelines and watch them all battling with the impact of their cruel inheritance. Only they individually can decide whether to take the test, if they want to know the truth lurking unseen in their own DNA. JJ and Colleen may not even choose on behalf of their baby son.

How should Joe deal with his burdens? Is there a way out? Should he take it? How can he best support his children? Should the youngsters go for testing? What are the implications if they do/don’t? Would I want to know?

I love books that are at once a gripping read and challenge me to think deeply – especially in the field of medical ethics. And even though I’ve been into these questions already myself as an author, I thought this book was brilliant and awarded it five stars. Beautifully written, compassionate, perceptive, engrossing, provocative. Genova at the top of her game again. Seems I prefer her as neuroscientist-turned-novelist rather than simply novelist. That could well be something to do with my own position on the spectrum; nevertheless the experience of reading Love Anthony and Inside the O’Briens one after the other, has taught me something of value for my writing too.

So, Genova has already tackled Alzheimer’s, Left Neglect, autism and Huntington’s. What next? MND, she says – or as she calls it ALS. Ahah! I await that novel with bated breath!

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