I’m shocked, frankly.
Babies are precious and special, aren’t they? And couples who can have them naturally are well blessed. Yes? Ask any infertile couple going through expensive and emotionally draining treatment. So what do you think of the latest recruitment incentive?
Apple and Facebook are offering a perk for female employees: the company will pay to freeze their eggs (and you’re talking about c£13,000 a pop here). Why? To help them ‘avoid having to choose between motherhood and professional progression.’ To ‘empower them’. Hello?
Apparently there’s a dearth of top women in Silicon Valley and this offer is designed to encourage them to defer motherhood until they are well up the promotional ladder. The frozen eggs bit is part of a package already in existence in Facebook in the States and due to roll out with Apple in the new year (although there are currently no plans to bring it to the UK). Facebook is also offering adoption and surrogacy assistance and other fertility services for both male and female employees. The mind boggles. Serious serious issues all; the kind of topics I grapple with on a regular basis.
When I think of the heartbreak and tragedy of couples who turn to fertility treatment or surrogacy or adoption as a desperate last measure for medical or other devastating situations, I want to weep at this news. To offer these things as a job-inducement seems to me bordering on sacriligious. I bet the small print doesn’t tell them there are no guarantees for women who voluntarily mess about with their biological clocks.
That’s my personal rant, but what do YOU think? Would you allow your employer to pressure you into something this private and personal? How does this square with your values and personal lifestyle and choices? I’m quite sure there are plenty of people out there who disagree with me or the offer would not be on the table.
In March of this year, Tania Clarence was 42. She lived in a smart five-bedroom house in an affluent area in south-west London. Her husband was an investment banker. She employed a nanny. The trappings of wealth and privilege, you might think.
But on 22nd April, while her husband was abroad, Mrs Clarence ended the lives of three of her children: 3-year-old twin sons, Ben and Max, and daughter Olivia, aged 4, all of whom suffered from type 2 spinal muscular atrophy, a degenerative wasting disease. She suffocated them and then tried to kill herself with an overdose. She was adamant that she didn’t want to be saved; she couldn’t live with the horror of what she’d done. How often must she have regretted that her suicide attempt failed.
Six months later, this week in fact, her defending QC said, ‘caring for three children with this condition was exhausting, distressing, debilitating and turned out to be overwhelming.’ Indeed. She pleaded guilty to manslaughter on the grounds of diminished responsibility. Medical reports described how she was suffering from major depressive illness. The courts have decreed she will not be charged with murder, but she will in all probability be treated in a psychiatric hospital.
Unless we’re drowning in her problems, it’s impossible for any of us to really empathise with the depths which drove her to this point, but I’m sure we can all understand her despair and depression. There was never going to be an escape from this intolerable burden, not just the relentless workload, but watching all three beloved children getting steadily more disabled.
I feel huge sympathy for her. And I say this with some feeling, because when my own firstborn collapsed aged 3 weeks and his doctors predicted a lifetime of disability, pain and suffering for him, I distinctly remember feeling that death would be preferable for him: better that I should be the one bearing the pain of losing him, than that he should suffer. So I for one am devoutly glad that the courts have decided Tania Clarence should not have to face murder charges. She is already serving a life sentence, poor woman.
Amongst the files on my desk for future novels is this one, labelled ‘Mothers Convicted of Child Death or Damage’. I’m not sure I will ever have the courage to write it, but Mrs Clarence’s story goes into it for now.
PS. For those who don’t know, my firstborn defied medical prognoses, and is a totally healthy young man today; he has always been hugely loved. So please don’t waste any sympathy on me. Or castigate me for my callous approach to motherhood! Not for a second did I ever contemplate actually killing him, but then I was never driven beyond endurance.
It’s Saturday. It’s raining. Where am I? Yep, at the Portobello Book Festival. Why? Cos I’ve been invited to take part in an event about dementia. (Hardened visitors to this blog will know about my novel on the subject: Remember Remember.)
Today I’m sharing the spotlight with a poet, a doctoral student, and a campaigner. Could be interesting. In the chair is Alison Summers who, as part of a PhD in Creative Writing, has recently written a novel about a young person with dementia (she’s currently on the hunt for an agent). She has the job of firing the questions and keeping us all to time – not easy as it transpires!
On the panel? Tommy Whitelaw who went from being part of a global merchandising operation for the Spice Girls, Kylie and U2 (yep, really!), to being a full-time carer for his mother when she developed vascular dementia. He’s currently touring the country campaigning for better care and understanding of the condition. He’s here to talk about his personal experience, not his brush with fame. Next to him is John Killick, who’s spent decades helping people with dementia express their creativity, the results of which are captured in his recent book, Positive Dementia. He’s one of life’s natural listeners and he’s still kept busy promoting improved ways of caring in all sorts of places. And then there’s me.
Ahah. The introductions establish a common thread: all three panel members have been working actively in the dementia world, using the spoken word, as well as the written – fact as well as fiction – to help raise awareness of the condition and the issues around it.
Perhaps it’s not surprising then that, though we all come from different backgrounds and different disciplines, and we weren’t in cohoots beforehand, a concerted message comes across: the importance of properly listening to people with dementia and their carers; listening to what they say and what they can only express through their body language or music or even silence. Care based on that kind of compassionate listening will be truly person-centred, respectful and sensitive. The kind of care we would all want for our loved ones.
This cross just inside the Old Parish Church (the venue for the session) seems entirely apposite. Sensitive, responsive care is a form of love for our fellow man.
Good to see friends from Blackwell’s Bookshop there too with piles of my novels. It still gives me a thrill to see those 3-for-2 stickers on them.
As I walk away from Portobello I’m reminded of Sigmund Freud: One must not be mean with the affections; what is spent of the fund is renewed in the spending itself.
PS. Remember this?
In spite of the rain and the professional engagements and the time spent with lovely ladies with dementia and all the sundries of everyday life, after four coats of paint, those endless endless railings and gates are now finally FINISHED! Hurrah!! And the tedium of the job gave me oodles of time to plot my talk – this time about Over my Dead Body. Another tick on the to-do list.
Wahey! At long last, after many a hiccup and delay (no, don’t ask) the electronic version of Over My Dead Body is finally available! And it’s only £2.48.
When I first met my future husband’s grandmother she referred to me as ‘the door handle’. I had no idea how to respond apart from with a shaky smile. By the time my mother developed vascular dementia decades later I was considerably wiser and more confident. Given the exponential rise in incidence rates, all of us must surely come into contact with dementia in one form or another at some point in our lives – a high proportion up close and personal. Having a degree of insight into the condition can transform a tricky situation into a meaningful experience.
As part of preparation for the Portobello Book Festival I’m appearing at in two days time, I’ve just re-read a book that was pivotal in my own understanding of dementia many years ago. It’s called And Still the Music Plays by Dr Graham Stokes, a very experienced clinical psychologist. And I’d highly recommend it.
Each vivid and sensitively written chapter is devoted to the story of one patient/resident who is exhibiting challenging behaviours, and alongside the narrative the author unravels a rationale for why they’re doing what they’re doing. All too often relatives say dismissively or desperately, ‘This isn’t our mum/dad/aunt/husband/wife. It’s the dementia’, but Stokes’ contention is that many difficult behaviours are not simply attributable to the underlying pathology of the disease, but need to be seen in the bigger context of the person’s life and experiences. Often a simple change of tactic can avert an outburst or distress.
‘Functional analysis is the pursuit of finding out ‘why’ people behave in the way they do. People, whether they have dementia or not, rarely do things without reason. Sometimes we have to ask ourselves, “Why did I say that, why did I act that way?”, and while we may not always like what we find out about ourselves, there will have been a reason. Similarly a person with dementia has reasons for what they do …’
Some solutions were relatively simple. Drawing the curtains at night so that Colin stopped being fearful of the strangers (reflections) lurking outside, and playing his favourite mood music, calmed him noticeably. Changing the colour of a bedroom eliminated Mrs D superstitious fear of the colour purple associated in her Catholic mind with death, grief and mourning. Removing a china cat stopped phobic Lucy’s persistent screaming.
Stop for a moment and consider the setting of a care home, the things that are done there. How would you feel on the receiving end? Then it’s easier to understand why private, reserved, dignified people were disturbed when taken from the relative peace and familiarity of their homes and placed (trapped) in locked wards with complete strangers (residents) all behaving oddly or menacingly, and other strangers (carers) invading their personal space and insisting on doing intimate things to them in secluded places. How are these external factors perceived by a mind altered by inexorable disease? Mrs O went from being ‘the most violent woman I have ever encountered’ to a much calmer gentler soul when Dr Stokes uncovered her past sexual childhood abuse, and realised that she needed the anonymity and unambiguous messages of a disinfected treatment room for all intimate procedures.
I’m sure we can all recognise many of the triggers Stokes identifies: long standing inhibitions about using public toilets; dehumanising or degrading management; an obligation to sit at a table with strangers exhibiting objectionable manners and habits; ‘enforced’ or ‘expected’ socialising; relentless noise, interruptions and activity.
‘Functional displacement provides the person with an equivalent but more acceptable means of meeting their needs in a way that is neither as invasive nor as exasperating for carers to endure.’
What a difference it would make if more of us were sensitive to these triggers and had the patience and persistence to find ways to circumvent them.
As it says on the book cover: ‘Storytelling is the oldest and perhaps best way of learning known to humans.’ The author’s detective work with 22 unique human beings whose lives have been turned upside down by dementia makes compelling reading, and what’s more these accounts help us all to see how important it is to reach out to each individual with compassion and understanding. There but for the grace of God …
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.