Richard Grainger’s new novel.
Perhaps it was no great surprise that the first word Dave said was ‘fuck’.
And the fact that this utterance occurred some eighteen years, two months, three days and seven hours after he was born caused considerable consternation; not least of all to Dave.
In fact, it caused so much consternation that the three other people who heard it imagined that they had heard it, or that there must be some other logical explanation for the fact that they all thought they heard it.
And this was because there was as little likelihood of Dave saying anything – let alone ‘fuck’ – as there was of the tennis ball that had just slammed into his temple reciting the entire works of William Shakespeare.
Dave is an eighteen year-old blind, quadriplegic victim of medical negligence. He also suffers from locked-in syndrome.
He is highly intelligent, has an almost photographic memory and is capable of absorbing knowledge at a phenomenal rate.
Trouble is, he’s the only one who knows this.
Dave’s world revolves around the antics of his dysfunctional, avaricious, unloving family and everything he learns from BBC Radio 4 – constantly playing in his room – which provides a link to an outside world he knows he will never belong to.
Life is bleak for Dave.
Then Dave meets Molly.
Molly is the first person to notice that Dave can communicate through voluntary movement of his right eyelid.
Can Molly save Dave?
Can Dave survive the Coronavirus pandemic?
Can Dave escape from his egocentric and neglectful family?
And can Dave fulfil his life’s ambition and follow his ultimate hero, John F Humphrys into a career in journalism?
Saving Dave, heartwarming and darkly comedic, is the first novel about locked-in syndrome.
Here’s a taster … the first twenty pages. Saving Dave will be available from Amazon and all good bookshops sometime soon, COVID-19 permitting!
ONE YEAR AGO
THE MORNING OF THE ACCIDENT
The truth is often boring.
Someone once said that a lie can go round the world in the morning before the truth has put his trousers on.
What I’m about to tell you is the truth and I don’t think it’s boring because it’s my life and although you may well end up feeling sorry for me – or there again you may not – it’s the best life I can have so I just have to make the most of it, even after everything that’s happened to me.
When you’ve finished reading this, you can make your own mind up about whether I’ve been lucky or not.
But who knows what the future holds?
Do any of us?
Let me tell you about myself.
I was born around eighteen years ago, a healthy baby. Of course, I don’t remember anything about this – does anyone? But from what I’ve found out over the years, listening to the parents’ conversations, this is what happened.
About two and a half years into my life, they figured out that something was wrong. Most babies, I believe, progress from crawling to walking by their first birthday, but by the time I’d passed my second birthday, I was still crawling across the carpet like a slug on a lettuce leaf.
And that’s a pretty good comparison – I think it’s called – because apparently I was shaped like a football, so when crawling became rolling, and then forward and sideways movement finally stopped altogether, the parents decided they ought to investigate. I don’t know why it took them so long to notice this, because I can’t remember that far back. But it doesn’t really surprise me, cos they’ve always found more important and interesting stuff to do that pay much attention to me.
It took a doctor who I think is called a paediatrician about three nano-seconds to work out that both my hips were dislocated, and that, without surgery to fix this, I had as much chance of walking as a baby seal.
So I had both hips broken and re-set, but I never got to walk anyway, because after the operation there was some sort of “complication”. And then after they’d got that under control, one of the nurses in the ITU went for a fag break, during which time I stopped breathing.
By the time someone noticed and the resuscitation team did their stuff I was totally fucked to the extent that not being able to walk was the least of my problems.
So let me tell you about my list of ailments: I’m blind, I can’t speak, but I can make noises – noises which most people find very irritating, which is pretty much why I make them … actually … no, that’s not entirely correct. I make them because everybody makes their own noises and why should mine be any less important than everyone else’s? It’s my way of expressing myself and just because nobody can understand me shouldn’t make what I have to say any less important. It’s like when the father hears something on the radio and says, ‘he’s talking utter shit.’ This doesn’t mean that there is actual poo coming out of his mouth, it just means that the father doesn’t actually like or agree with what he’s saying. So that makes my noises better than “talking shit” because nobody can dislike or disagree with what I’m saying because they can’t understand it. For me what I’m saying is perfectly clear and just because I can’t make it understandable shouldn’t make it any less valid … should it?
Anyway, that’s got that off my chest.
Where was I?
Oh yeah, my ailments.
I have no control over any of my limbs; I think this is what’s known as quadriplegic. I’m supposed to have Epilepsy – okay, hands up, I fake this because I learned how to do it, and that a convincing epileptic episode at least this guarantees me some attention. A seizure is the correct term, but the father refers to it – mainly to annoy the mother, as a “fit”. And I also quite like the medicine. It tastes okay and sends me to sleep and being asleep is, by far, my favourite time. It’s a time when no one can be horrible to me.
And to make all of this worse I’ve worked out from what I’ve heard on BBC Radio 4 – which the mother leaves on in my room all the time because she likes to listen to it and she probably assumes that I would too – which, actually, I do – that I have what is called locked-in syndrome.
Yes. Read that again … Locked. In. Syndrome.
The trouble is that I’m the only person to have figured this out.
As you might understand, I find this really frustrating, but I’ve sort of got used to it by now … well most of the time anyway. I can be quite negative, bitter and resentful about what happened to me, but I usually try to be positive. Sometimes though, it makes me, I don’t know … maybe angry, when I think about how the parents have used my shitty life to their own advantage? Maybe that’s not completely true. If I’m honest, I can remember the mother caring for me in a sort of maternal sort of way before she found something better to spend her time on than looking after a fuck-up like me.
By the way, I need to warn you that there is going to be some strong language in this narrative. The person who is writing it for me – Sarah – is called a ghostwriter. She’s writing this for me because I can’t read, I can’t write, and although I know some quite complex vocabulary, because of BBC Radio 4 (like psychopath, for example) I’m not confident that I understand other words well enough to use them. That’s because I can only learn words that I hear being used and if I don’t hear them on BBC Radio 4, I can’t grow a bigger vocabulary. And I’ll tell you how she’s managing to write this in a bit.
I’ve told her not to use words that I can’t understand, because when she reads this back to me I want to be sure that this is what I wanted to say and not some work of literary fiction.
So those are my disabilities, but you’re not allowed to call them disabilities any more because we all have abilities, don’t we? Even fuck-ups like me.
And just what are these, you’re wondering?
I have control over the movement of my right eye. Nobody knew this of course, other than Scooter the dog, so this skill set had fairly limited value.
I have an incredible memory. If I hear a word, even a really complicated word, I always remember it. But if I don’t know what a word means I can’t ask anybody so I just have to guess and sometimes I get it wrong. And I never forget people’s names or numbers … especially numbers actually. I can tell you how many people there were on the Titanic (one thousand, three hundred and sixteen passengers, and nine hundred and thirteen crew, making a total of two thousand, two hundred and twenty-nine) and how many survived (seven hundred and thirteen) when it hit an iceberg although I’m not completely sure what an iceberg is or why it hit it in the first place.
And I have fantastic hearing. Well, it isn’t really fantastic because to hear everything isn’t as cool as it sounds and, in any case, it only keeps me awake. And I can control movements of my head, which I do to follow the direction of sounds.
But when I began to understand what people were saying, listening to what they said about me was, at first, quite distressing. They say things about me because they think I can’t understand what they’re saying. But then I got used to it and over the years it simply became static. Same old … same old.
At least, that was the case until around a week ago – I can’t remember exactly when because I’ve not got much concept of time, and unless I try really hard and pay attention to the radio, I get really confused.
So let’s just say it was a week ago. One day the father came back from the pub and was, for once, not particularly unpleasant to me. In fact, after he’d drunk some more beer, he came into my bedroom, kissed me on my forehead and told me that he’d had a call from his – actually my – lawyer, that and I was going to be worth something after all.
DIARY ENTRY: Monday May 6, 2002
Dave came into this world at 3.57 this morning.
I’d love to say that he just popped out but he didn’t.
He’s my son, my first-born and I love him but I can tell that something isn’t quite what it should be – I just know nothing is going to be plain sailing.
It was an obstructed labour, or what is called ‘labour dystocia’ and this meant that my uterus was contracting normally, but the little blighter refused to come out through my pelvis because it was physically blocked.
And guess what was blocking it?
Dave of course.
But I can’t really call him a little blighter because with a birth weight of nine pounds and fifteen ounces he was classed as a large or abnormally sized baby.
And this meant an emergency C-section, or if we’re splitting hairs, and unplanned C-section, because the doctor considered that Dave’s life wasn’t in danger, whereas the midwife thought it was, as there was a significant chance that he wasn’t getting enough oxygen, and even in my state, as a nurse myself I know that lack of oxygen results in either severe brain-damage or death.
Put like that, I’d say his life was in danger.
So, on the positive side, I’d already had one epidural already so I had what is called a combined spinal-epidural anesthesia and I felt nothing.
And when I say nothing, I mean nothing.
I suppose, if I’m honest what I did feel was relief. Relief that the ordeal was over, but none of the joy and euphoric bullshit the second-time mums had eulogised about in the pre-natal classes.
I will always remember holding him and feeling a strange sensation of disappointment. I had this, I suppose … premonition that the complications of his birth would be surpassed by the complications that his life would bring. I put it down to the fact I was exhausted and alone. No Roger – I can’t remember what his excuse was, and frankly the only interest he had shown in my pregnancy evaporated after the conception.
I had this weird conviction that here was an unremarkable baby – size apart – who would stumble through an unremarkable childhood and an unremarkable youth into an unremarkable adulthood and, at best, his life would be a litany of complication and disappointment.
And so I passed him back to the midwife and fell into a deep, dreamless asleep.
ONE YEAR AGO
THE MORNING OF THE “ACCIDENT”
The best part of being forced to constantly listen to BBC Radio Four is that occasionally you accidentally learn something that might be of use.
Okay, so I’ll admit, you probably can learn something everyday, if you are minded to do so, which incidentally, I’m not.
Take the news for example.
This is what is going on in the world, but how it’s supposed to interest most ordinary people is, well … beyond me. Most of it is boring because it’s about things called markets and politics. Although I actually like the news – because sometimes there are really interesting stories – most of it is just irrelevant information, isn’t it? What interests the people who report the news – I think they’re called the media – is the reaction to these events … the crying mothers, the screaming children, maybe – if they’re lucky – smoke or a scene of total destruction they can describe in the background; the over-excited eye witnesses – sad losers given a chance to talk to an audience for the first time in their lives. That’s good reporting though; giving a total nobody his fifteen minutes of fame, somebody once called it, or so John Fucking Humphrys told me. Actually, more like fifteen seconds.
By the way, I don’t think this is his actual name but this is how the father refers to him, so perhaps it is? Although on the radio, they don’t seem to bother with his middle name. I wish my middle name was Fucking instead of Nigel because that would be really cool.
There was an American politician called JFK who was shot and I wonder if his middle name was Fucking as well? Perhaps that’s why people always use his initials when they refer to him.
So I think in future when I want to talk about John Fucking Humphrys I’m going to call him JFH because it’s neater and I’m not sure whether he likes his middle name being used anyway.
I don’t know much about people, but I do know that they are only interested in things that affect them. And as a mass murder in a Texas church has no bearing on the cost of beer, mortgages or petrol, it isn’t what most people would call newsworthy. But of course it is newsworthy because I don’t think mass murders occur very often in this country so that means this country is supposedly a safer place to live. Unless I’ve missed something … which is entirely possible.
Aren’t I lucky?
But mass murder in itself interests me. Not mass murders in which random people get killed, but mass murder where the killer targets a very specific group of people.
Like, for example, his family.
ONE YEAR AGO – THE MORNING OF THE “ACCIDENT”
Roger hasn’t given much thought to how he might avoid wasting a day supervising the twins and baby-sitting Dave.
He hasn’t given much thought to it because this is Gill’s job.
But Gill hadn’t been well recently. No, that wasn’t right – Gill hadn’t been “herself” recently. There was a difference here. Okay, she’d had some sort of breakdown that resulted in her seeing a shrink twice a week since then, but that couldn’t be classed as illness, could it? Gill was always having “breakdowns”. Like the time she got up from the dinner table, screaming how much he hated this fucking family and then disappeared for two days, only to return acting as if nothing at all had happened. NFG, Roger had remarked to the twins, Normal For Gill.
Or the time – when the twins were aged about four – that she scooped one under each arm, grabbed her bag and car keys, stormed out and left him to look after Dave for six hours. Probably the worst six hours of his life, and certainly the only six hours he had ever devoted to Dave.
This particular bonding process had consisted of an aborted attempt to feed him; an endeavour made only because he could find no one else to do it. And this challenge resulted in Dave returning the food to Roger, spraying it over a relatively new and hitherto clean Hugo Boss Tee shirt in projectile fashion. After Roger had cleaned up and calmed down a bit, he repaid Dave by banishing him to his beanbag with BBC Radio Four for company. And in between these two events the real bonding had taken place, wherein he had informed his eldest son (then aged seven) that he was a blot on humanity, the worst thing that had ever happened to him, and if he didn’t die of natural causes pretty soon, then he would think of a way to assist him with the process.
Dave turned his head despondently to the left, and other than making what Roger refers to as “one of his mooing” noises, had nothing further to say on the matter.
This particular day starts with no hint of abnormality. It is going to be no worse that any other wasted day.
Bright morning sunshine floods the bedroom, pulling Roger into a sluggish and reluctant wakefulness. Gill, as she does every day – whether he wants it or nor – had left him a mug of sweet, milky tea at six thirty before she takes Scooter – the acrimonious, malodourous mutt of indeterminate ancestry who had duped them into adoption from rescue kennels nine years ago – for his reluctant run.
And, as is the case every day during Roger’s holidays, the tea is ignored and he drifts back into some sort of slumber in which he dreams of a life in which things are very different, and one in which he isn’t facing the fact that the family home will soon be repossessed if he doesn’t find a solution to his current financial crisis.
And, of course, he dreams of a life without Dave.
So here we are then, the scene is set. Tuesday 23rd July: the second day of
the second week of Roger’s summer holiday. The precious six weeks that span the abyss of time he wastes teaching SMSC (Spiritual, Moral, Social & Cultural Education – including careers) to semi-literate primates at Wiley Hall Academy, whose only interest is to avoid any form of learning other than that which keeps them at the top of the food chain on their own feral council estates.
And if you hold the belief that academy status is no longer a governmental strategy for improving failing schools, Roger would put you right on this. Because the trick is to get through the day without the enactment of threats of violence from “students” or giving grounds for HR to haul him over the coals for an inappropriate verbal or even physical response to said threats.
But things hadn’t always been this bad, and the fact that this was as bleak a phase of his life as he could remember was, Roger would reluctantly admit, totally his own fault.
Roger is forty-six years old and the only child of elderly parents who had died shortly before his fortieth birthday, leaving him over two million pounds and twenty acres of interesting but undevelopable land. The manner of their death was not without mystery, but the coroner concluded that the failure of their car to stop at a major traffic light controlled junction was down to “natural causes”.
And this was undoubtedly due to the fact that Hempsall senior had inadvertently taken around four times the recommended dose of Sitagliptin – a drug he took to control diabetes – and, as a result, had suffered acute heart failure. And whether it was his heart’s failure or being t-boned by a Tesco eighteen-wheeler that had killed him was purely conjectural, concluded the coroner. The fact of the matter was that John and Eileen Hempsall were now dead, there was no blame to be attached to this event, therefore the executors of their wills were free to distribute their estates to the beneficiaries – there was only one – as prescribed.
The salient outcome of this had been that it had allowed Roger to retire from teaching, an occupation he had come to hate but one, which he would privately admit, at least meant that there were only two months of the year in which he had no holiday. And Ashley Grove Preparatory School, with its middle-class, middle-England values and punters who were happy to shell out the best part of twenty-five grand a year for boarding education, suited Roger’s somewhat elevated perception of his own social status.
In short, Roger was a snob.
Also, teaching put some distance between himself and Dave.
But by his forty-fifth birthday, the inheritance money had all but gone … fast cars, doomed business projects and an escalating gambling addiction being the principle money pits.
Thus, Roger had been forced to return to teaching. But the doors of Ashley Grove Preparatory School were firmly closed to him. Noel Sprockett, the long-suffering headmaster had heaved a gigantic sigh of relief upon receipt of Roger’s written notice to quit, and welcoming Roger back was about as appealing as an unannounced OFSTED inspection coupled with having to actually leave his study and teach. Sorry, Roger, no vacancies, no … not even on a part-time basis. Let you know if anything comes up, old boy.
So it was the state section to which Roger was reluctantly forced to turn, and after six months of fruitless applications largely due to a) Sprockett’s less than complimentary reference and, b) the fact that state institutions are not renowned for their warmth of welcome to those from the “other side” of education, Roger eventually managed to land the job at Wiley Hall.
But it paid a pittance.
The cars had long gone – his beloved Aston Martin had been replaced by a ghastly little Japanese run-around and an adapted handicapped van for Dave’s transportation. But worse still, Gill had been forced to return to work, and this was a double whammy as a) blame for this was firmly laid (justifiably, one would have to conclude) at his door, meaning sex was as rare an occurrence as a fulfilling and enjoyable day at work and, b) he had to spend more time child-minding Dave.
Added to this dismal scenario was the fact that an escalating amount of sick leave, ditto seeing her shrink, had resulted in a severe reduction of income from Gill’s employer, and the threat of this – like sex – drying up altogether loomed closer by the day.
So all in all, on this bright and beautiful July morning, reasons to be cheerful were few are far between.
And as Roger had, against Gill’s advice, opened a third bottle of wine last night, even the prospect of alcohol later in the day did little to brighten his gloom.
But … there was one thread of hope; one faint half-chance that could change all of this. And a phone call he’d received yesterday morning had turned that thread into a rope, almost a rope bridge that crossed the chasm between poverty and wealth.
About three years ago when the money mountain was starting to look like a small slagheap, something happened.
Dave had a minor accident at his school, which resulted in a short stay in hospital and, following this, Roger persuaded Gill to talk to a lawyer.
The lawyer concluded that, while they were likely to win the case, what they (Dave) would be awarded by the court would barely cover his costs.
But have you ever considered, he’d said, investigating how Dave got to be, hmmm – and here he paused, searching for more appropriate words than “totally fucked”?
Roger had, in fact, considered this on many occasions but had failed to persuade Gill of his altruistic motivation for this course of action. Gill was a nurse, and nurses do not sue the NHS do they, she’d said? And in any case, she’d told Roger, your only interest in this is that you see Dave as a potential cash cow.
But the lawyer, a Mr Charles Cuerliez, a senior partner of a firm named Gottemby, Short & Cuerliez, was very convincing.
It’s not about the money, he’d said. Well it is about the money, but it’s only what Dave is entitled to, and what is going to happen to Dave in the future? Hmmm? Besides, you are entitled to compensation for justifiable expenses in connection with Dave’s needs over the past, let me see … fourteen years.
Dave had been present at the initial meeting, for the simple reason that on this occasion there was nowhere else to leave him, and at this point had made one of his “mooing” noises – not dissimilar, most people thought, to utterances made by Chewbacca. Noises that no one – other than Dave – was ever able to attribute any meaning. But on this occasion it meant agreement.
What, continued Mr (call me Charles) Cuerliez, if neither Social Services nor the NHS were able to provide an appropriate home for Dave in the future? What if Dave – due to lack of funding – were to be shoved into an Old People’s Home and left to lie in the corner on a [piss-stained] beanbag, with wholly inadequate care from low-paid eastern European staff who couldn’t give a tuppenny fuck (not his exact words) about his welfare? Hmmm? And here Dave had emitted a louder “moo” for which a subtitle might have read: ‘no fucking way!’
So Gill had been persuaded.
And then, a week ago, Mr Cuerliez had made a hugely significant discovery. The ITU staff roster from Monday June 14, 2004 showed that there was insufficient staff on duty.
Cuerliez had struck gold.
According to the Paediatric Intensive Care Society’s recommendations:
“In summary the minimum number of qualified nurses required to staff one level 3 critical care bed is, therefore, a minimum of 7.01WTE.”
The roster showed that there were only two nurses on duty and at the precise moment off Dave’s – let’s call it – “incident”, one had gone out for a fag break – of course this was referred to as “on administrative duties” – and the other was responding to an emergency affecting the only other patient in ITU, who was registered as level two critical.
And as Dave was a critical level three critical patient, that made it four point nought one nurses short of a full posse.
The North Eastern Health Authority was understandably reluctant to hand over the relevant documentation, but when they were eventually persuaded to oblige, and “call me Charles” discovered that one page in the roster from Monday May 12th had been crudely doctored, and another was missing.
All Mr Cuerliez, his team of barristers and a top QC had to do now was to persuade The North Eastern Health Authority that the game was up and to settle out of court. But although one battle, he’d told Roger on the telephone yesterday – maybe a tad pessimistically – had been won, they were still a very long way from winning the war.
Roger had no idea what the spoils of this particular war might be but he knew the sum coming their (Dave’s) way would be sufficient for him to tell the head of HR at Wiley Hall to shove her letters of complaint where the proverbial sun doesn’t shine.
And with that thought, he heard the back door open, Gill’s voice yell: ‘come here you mangy old bastard,’ (presumably at Scooter) and decided it might be as good a time as any to get out of bed.