Motor Neurone Disease
To write or not to write? that is the question
As I indicated last week, it’s an ongoing preoccupation with me – will readers want to immerse themselves in dark, melancholic tales? The issues I tackle all have this side to them, and each time I have to work hard at achieving a healthy balance; each time I worry: have I got it right?
Take Right to Die. 
For those of you who haven’t read it, it tells the story of a young man, Adam, who develops Motor Neurone Disease when he’s only 38. He knows he will die within a couple of years or so. Yep, plenty of scope for low spirits there, and I confess I still can’t read it without weeping myself. But then, I know Adam intimately. I lived with him for several years, and his spirit lingers with me. It’s personal.
So it was tremendously warming last Thursday to be invited to put in a guest appearance at a book club, and hear that, though they feared the worst, the members didn’t find the book at all depressing. They were so generous about it, and we had a wonderfully uplifting evening analysing why not, and teasing out the components of a book that ensure a good read. Yes, we did discuss the pros and cons of assisted dying along the way, but also what made Adam warm to the colourful Jamaican physio Lydia, but not the texbook perfect Veronique. Do exemplary GPs like Hugo Curtis really exist? Why did the cat have to die? What was really going on in that closed room between the GP and his patient? Do we smell romance between two of the principle characters? Very confirming. And such fun. I salute you, ladies! (Apologies for the poor quality photo – it doesn’t do you justice.)
This got me thinking about other books of a similar complexion. You know the kind of thing: Lionel Shriver’s We Need to Talk about Kevin; Jodi Picoult’s Nineteen Minutes; Alice Sebold’s The Lovely Bones et al. And no, those novels didn’t depress me either. Why not? Because the macabre subjects (teenage massacres, rape and murder) were handled so skilfully, the stories so well told. I was challenged but not crushed.
Which brings me to Jeffrey Eugenides. I read and loved his wonderful book on hermaphroditism, Middlesex, ages ago. So when I saw his earlier novel, The Virgin Suicides, I snapped it up. This week it rose to the top of my pile and I devoured it in two sittings.
It’s not in the same league as Middlesex, but still worth reading. Basically it tells the story of the five adolescent Lisbon sisters who all commit suicide. Dark material? Positively ink black. The girls grow up in an eccentric and isolated environment. They’ve become an object of fascination to the local boys who watch them from various vantage points, and even on one memorable occasion, entice four of them out a joint date – the only one they were ever allowed. The narrator is one of these lads who, now grown up, looks back at the unfolding saga as if he’s compiling evidence for what happened, and searching for a plausible explanation.
Hmm. Teenage suicide, self harming – definitely not cheery bedtime reading, I think we’d all agree, so why is it so entertaining? Well, the tone, the style of writing, the irony, the humour of each situation, bring a light touch that seems to take the sting out of the essential tragedy, diverting attention and setting a broader canvas against which the lives of these doomed girls are played. Hard to describe so I’ll try to illustrate what I mean.
We aren’t worrying all the time about terrible happenings jumping out at us just as we start to get attached to the characters. Come to think of it, I didn’t form an attachment to any of them. We know from the outset that they will all die as you can see from the opening sentence.
On the morning the last Lisbon daughter took her turn at suicide – it was Mary this time, and sleeping pills, like Therese – the two paramedics arrived at the house knowing exactly where the knife drawer was, and the gas oven, and the beam in the basement from which it was possible to tie a rope.
And we also know early on that we are in sure hands. From Eugenides’ account of the girls’ intentions:
And it was then Cecilia gave orally what was to be her only form of suicide note … ‘Obviously, Doctor,’ she said, ‘you’ve never been a thirteen-year-old girl.’
… and even of the deed itself:
Through a side window we could see Mr Lisbon standing in the shrubbery. When we came out the front door we saw that he was holding Cecilia, one hand under her neck and the other under her knees. He was trying to lift her off the spike that had punctured her left breast, traveled through her inexplicable heart, separated two vertebrae without shattering either, and come out her back, ripping the dress and finding air again. The spike had gone through so fast there was no blood on it. It was perfectly clean and Cecilia merely seemed balanced on the pole like a gymnast. The fluttering wedding dress added to this circusy effect. Mr Lisbon kept trying to lift her off, gently, but even in our ignorance we knew it was hopeless and that despite Cecilia’s open eyes and the way her mouth kept contracting like that of a fish on a stringer it was just nerves and she had succeeded, on the second try, in hurling herself out of the world.
… and the funeral:
Only the family filed past the coffin. First the girls walked past, each dazed and expressionless, and, later, people said we should have known by their faces. ‘It was like they were giving her a wink,’ Mrs Carruthers said. ‘They should have been bawling, but what did they do? Up to the coffin, peek in, and away. Why didn’t we see it?’ Curt Van Osdol, the only kid at the Funeral Home, said he would have copped a last feel, right there in front of the priest and everybody, if only we had been there to appreciate it. After the girls passed by, Mrs Lisbon, on her husband’s arm, took ten stricken steps to dangle her weak head over Cecilia’s face, rouged for the first and last time ever. ‘Look at her nails,’ Mr Burton thought he heard her say. ‘Couldn’t they do something about her nails?’ And then Mr Lisbon replied: ‘They’ll grow on. Fingernails keep growing. She can’t bite them now, dear.’
This concentration on seemingly unconnected and disproportionately trivial points fits with the narrator’s original naive understanding of what was really happening. The tragedy of five teenage suicides in one family, of the subsequent disintegration, is subsumed under a welter of information about swarms of fish flies, and cats yowling, and unearthly smells, and protests about tree felling, and boys trying to glimpse girls in various states of undress – the preoccupations of adolescent youths. In this case a very clever tactic for counter balancing the horror of the Lisbon tragedies. The more adult understanding that comes from later interviews with neighbours, teachers, parents; the piecing together of exhibits which make sense of the seemingly incomprehensible, is titrated in as necessary in order to create a cohesive picture of what was really going on.
Reading this, analysing it, was like a mini master class for me. Would that I had this kind of skill. It also made me see that dark topics need not be off limits.
Authentic fiction
I do love hearing from readers, and I’m always impressed when they make contact. It’s something I rarely do, but should do more often – no, not with myself, with authors whose work I’ve enjoyed.
‘Star letter’ this week goes to ‘Trish’ who wrote asking for the reference for a medical thriller mentioned in my novel Right to Die. The main protagonist, Adam O’Neill, a journalist who has developed Motor Neurone Disease, lends the thriller to his GP, Dr Curtis, and writes in his diary:
He’d brought back a book I’d lent him, a brilliant medical thriller about a serial murderer who developed aplastic anaemia. I’d been impressed by the twist in the tale, and thought Curtis might appreciate its medical cleverness. The killer went on to have a bone marrow transplant from his sister. Result: when he was a suspect years later the forensic people said he couldn’t be the killer because his DNA didn’t match the samples from the crime scene. Naturally, the hotshot detective got hold of some distant relative and winkled out the story of the transplant and hey ho, the villain’s clapped up in jail and they’ve thrown away the key.
The crime story was entirely fictitious, but of course I was chuffed to find someone wanted to read it. And more delighted still that my correspondent wrote to me subsequently to say she was a nurse who works with people with MND, and how true Right to Die rang with her experience. That kind of endorsement from experts is special. Very confirming.
In a couple of weeks time I’m due to attend a bookclub where the members are going to be discussing Right to Die, so I’m hoping they’ll be as enthusiastic as Trish. I know there’s at least one doctor in the group, so I’m not expecting an easy ride. But the challenge is stimulating, and there’s a particular thrill in hearing other people talk about my characters as if they’re real people. To me they are; I know them intimately.
Trish’s endorsement made me feel so chirpy I abandoned research into auto-immune hepatitis (for my current novel) and went off to try out a new recipe for a raspberry and amaretti gateau.
Nicely used up the last of the raspberries from the garden.
Rating and reviewing
It’s commonly said that a bad review is better than no review, but I can’t imagine any author enjoys getting slated by readers or receiving poor star ratings. Indeed some writers deliberately never look at the reviews lest they are derailed by them. But what a subjective thing it all is anyway. Your meat, my poison, and all that.
Let me illustrate. Last week I read The Kindest Thing by Cath Staincliffe. It was recommended to me as ‘your kind of book’, and the Kindle version was a mere 99p, so of course I snapped it up. And indeed it is my sort of book. It’s accessible fiction dealing with a thorny on-going medical ethical issue in a challenging way, leaving me asking, What would I do in these circumstances? Familiar? In fact it’s the closest thing to my own novel about assisted dying (Right to Die) I’ve seen thus far.
Basically it tells the story of 50-year-old Deborah who is on trial for helping her husband Neil to die rather than continue life with Motor Neurone Disease. Her own daughter reports her to the police. Her son’s precarious mental health is threatened. Prison gives her too much time to reflect on the repercussions of what she agreed to. Yep, my kind of thing definitely. And I enjoyed it.
As did many others. Most reviews I’ve seen are strongly approving: ‘beautifully written’, ‘pitch perfect’, ‘page turning stuff’, ‘sensitive’, ‘powerful’, ‘courageous’. The main protagonist is both likeable and believable, they said.
But a few folk, reading the same book, about the same characters, have slated it: ‘shallow’, ‘depressing’, ‘tedious’, ‘predictable’, ‘unlikeable cardboard characters’, ‘offensive and narrow-minded’, ‘cheesy’.
Oh dear. If someone said such things of my work, I’m pretty sure I’d succumb to a horrible sinking feeling. Possibly even go into a temporary decline. But why? One step removed, viewing these comments dispassionately, I can see quite clearly it’s a subjective opinion. The readers are free to express it. They might (or might not) even be having a bad day, or going through a rough patch themselves, or they may have a hidden agenda, or feel threatened by the author in some way.
In any event, it’s a known and accepted fact that we all like different kinds of writing. If you’ve ever belonged to a bookclub, even one made up of like-minded people, you’ll have experienced that reality. And haven’t you ever read a bestselling book that’s had rave reviews, and wondered what all the fuss was about? Be honest now, how many Booker prizewinners have you really enjoyed?
Me, I don’t care if everyone else loves a book, if I don’t, I don’t. End of story. OK, I might analyse the pros and cons more carefully if I’m decidedly out of step with respected opinion, but I’m not tempted to trot meekly along in the wake of the majority just to conform. Because there can be a myriad reasons in my life and belief system and experience and preferences why I personally feel as I do about that particular book. I am perfectly entitled to my subjective opinion.
So, what am I saying? Well, criticism feels very different when you’re on the receiving end. But perhaps we authors are unrealistic from the outset. We shouldn’t expect to achieve unqualified 100% five-star ratings. Remember those famous lines from the poet John Lydgate, later adapted by President Lincoln:
‘You can please some of the people all of the time, you can please all of the people some of the time, but you can’t please all of the people all of the time.’
Cath Staincliffe’s ratings have given me new heart. From henceforth I shall not even attempt to appeal to all tastes. I shall concentrate on being true to myself. And if and when a poor review pings in, I shall pick myself up, dust myself off, and get right back on that writing horse. God willing. Oh, and if that fails, re-read this post!
Marriage, death and blueberry muffins
I’m frequently amazed at how many articles in the newspaper touch on my subject area on a daily basis. Sensationalised often. Distorted even. But drawing attention to important issues nevertheless. Take yesterday’s edition for example.
A judge has just ruled that a 67 year old man who has had Motor Neurone Disease for 10 years, may be allowed to end his life peacefully by declining treatment. So? you might be asking, I thought any mentally competent patient had the right to refuse medical treatment. Indeedy. But in this case the patient has been unable to communicate his wishes directly for some time; he can only use eye movements. An advance decision was formally drawn up last November after several discussions and with all the important people present. Watertight you might think, but apparently a carer who wasn’t there, cast doubt on the nature of the patient’s consent, hence the case went to the High Court for clarification. Sad that the family needed to endure this additional delay and burden. The question is: Would you consent to this for yourself or your loved one? As a professional, would you have allowed it to go ahead unchallenged?
Still with death, an American study (published in Personality and Social Psychology Review) has discovered that awareness of mortality can have positive effects. Really?!! The headline put it: ‘Save your marriage by thinking of death’. Not surprisingly, it makes people value the finer things of life more. But, how ready would you be to clutch at this particular straw?
The social network site Facebook has just launched a new feature to encourage users to sign up as organ donors. It’s reported that 6,000 signed up to Donate Life America by the end of the first day. A ‘health and well-being button’ allows users to register with the optional extra of telling their friends (or the world if they prefer) that they have become potential donors. Question is: Are you a registered donor? If not, would you be more inclined to join up this way?
Me, I’ve been in the business long enough to have registered as a donor online years ago, and to have drafted a formal advance directive which has been duly signed and witnessed, and to have notified my family of all these wishes and intentions. But I’m only too pleased the media are raising the nations’ consciousness of the issues.
But to end of a lighter note … also in the newspaper this week a survey carried out by a food company, actually reported that one youngster in six regarded a blueberry muffin as ‘fruit’ that counted as part of their five-a-day recommended intake. As they say: You’re avin a larf!
Seems to me journalism could be fun!
A plague on platitudes!
In my former life as a researcher at Edinburgh University, before I became a novelist, I spent a number of years with bereaved parents. Now, I don’t know about you, but I can’t think of anything much more harrowing than watching your child die.
And yet I heard first hand from these grieving men and women that a large number of their relatives, friends and acquaintances churned out platitudes like: ‘He was only a baby, you didn’t really know him’, ‘At least you can have another one’, ‘You’ve still got John and Polly.’ In effect saying: You have no right to grieve. It’s no big deal.
Those parents changed me forever. I’ve never quite regained my tolerance for those who make heavy weather of trivial burdens and moan about their lot.
A similar (though far less damaging) experience is coming my way at the moment. I’m being told to count my blessings in one form or another, or I’m being told what I must be feeling. I have visions of carrying a placard:
I KNOW she’s at peace; I KNOW she lived a full life; but SHE WAS MY MUM. I really, really, really don’t need you to diminish my loss.
I felt the iniquity of these kind of platitudes acutely some years ago when I was inside the skin of one of my characters, Adam O’Neill. He’s a young journalist, 
at the peak of his potential when he develops Motor Neurone Disease in Right to Die. He’s facing an early death. He’s fully aware that though his body will disintegrate inexorably, his mind will still be functioning normally, totally conscious of the gathering horror. Imagine that kind of living death … if you dare.
I’m going to reproduce his reflections on how people reacted to him in full, because he sums up the iniquity of denying someone else in dire trouble the right to feel lousy and sad and angry.
While other people are writing Christmas lists, I’ve started to compile a glossary of things people say alongside my private responses. Outwardly, I’m afraid, I’m still locked into the hypocrisy of polite social exchanges.
‘You can still lead a full life.’
Being in a wheelchair, struggling for breath, may seem full to you, pal, but I’ve known better and by my yardstick it stinks.
‘Your attitude will make all the difference.’
Why do people put the onus on me? If I deteriorate quickly, will that be a comment on my approach to life? If it’s legitimate for you to be fed up with trivia, why can’t I be frustrated by this major disaster?
‘Try not to worry about the future, we none of us know what it holds anyway.’
Maybe, but I know pretty much what mine looks like; you can still believe that on the law of averages you’ll have a reasonable lifespan and kids and a career and a pension.
‘Enjoy today. Think positively about what you can do, not what you can’t do.’
I’d like the feel of that if I said it myself; I hate it when other people in perfect health slug it to me.
‘Channel your energy into creating the best quality of life you can.’
Ditto.
‘It’s a good thing you don’t have kids.’
Now that is below the belt. I’d give a king’s ransom to have the assurance that something of me lived on after my death.
‘At least Naomi’s still young enough to start again.’
Start what? D’you think I haven’t recognised the fact that she’s young and attractive and desirable and ready for the next stage in her hormonal life? Do you have to tell me she’ll probably have kids with some other bloke? Do you?! Damn it, I want her to be happy with me! Have kids with me!
‘Live positively with MND.’
That’s one of the most patronising comments to date. It conjures up those Pollyannas who are paralysed from the neck down, or whose families are wiped out by a senseless act of terrorism, who go on record as saying they’re a better person for having tribulations in their lives. Ergo, they’re glad they’ve had these things happen to them. Give me a break! Goodness thrust upon you can’t be the same value as goodness you chose to cultivate, can it?
‘I see you’ve kept your sense of humour – that makes all the difference.’
I’m sure it helps you, but remember it costs me. Just because I’m poking fun at my own inebriated gait or my drunken slurring doesn’t mean I’m laughing on the inside. Sometimes it’s just a cover to defend myself from pity, or ridicule, or too much sympathy. Or it’s because if I don’t laugh I’ll slip below the surface and in all likelihood never come up for air again.
On a good day I can tell myself most of these things but if there’s one piece of advice I’d give to everybody about dealing with folk in trouble, it’s this: Never ever count their blessings for them, or exhort them to count them themselves. Contrarily I know if someone else commiserates with my plight, my instinctive response is along the lines of: Things could be a lot worse; and to focus on what I can do. But that’s my prerogative, no one else’s.
I leave the last word on the subject with him.
