Three days later, he was allowed to have his ECG. Result: normal.
Stuart’s mother gathers her coat and bags, and gives a last comic look at the comatoses, as if to say ‘Poor you–soon it will be night-time and you’ll be here on your own with him’ promises to come again first thing in the morning, and walks off in the direction of Dermatology.
‘Like I told you before,’ Stuart resumes, ‘if you don’t actually hit a screw, just do something mad like throw shit at them or chase them around with a lump of wood, it’s a good way of getting things done.’
Muscular dystrophy–is that the one that has posters of an attractive female cellist with a strip torn down her back? Or is that spina bifida? Perhaps muscular dystrophy is the one that kills kids, drowning them in their own spit, after a lifetime of twisted wheelchair misery? Or maybe that’s multiple sclerosis.
I look it up on the Internet. Muscular dystrophy is wheelchairs and wasted biceps.
There are lots of types. MD is one of those broad medical terms which uses up labels like a new star formation. Limb-Girdle affects the limbs by eating at the muscles of the pelvic and shoulder girdles. Distal begins in the hands and feet and works inwards. Oculopharyngeal, the eyelids and throat. Some of them set in when the person’s a child, some when you’re as old as sixty. Duchenne’s is the nastiest, and the most common. These victims of God’s omnipotent love die in agony and terror in their teens.
When Stuart was three, a doctor in the same hospital he’s in now had pulled him about like a doll, pinched his fingers, flicked his arms, made him stand up and down as if he were on a baby parade ground, tutted over his weak, side-to-side walk and nodded with approval when Stuart fell over…but got up again more or less like an ordinary human being and not with the Duchenne’s weird trick of ‘climbing up his own legs’. ‘If you’re going to have muscular dystrophy,’ said the doctor, looking up at Stuart’s mother with relief, ‘he’s got the best sort to have.’
Fascioscapulohumeral muscular dystrophy affects the muscles of the face (fascio), shoulder blade (scapulo), and upper arm (humeral). Transmitted through a damaged genetic structure, there is a fifty per cent chance that the offspring, male or female, of an affected parent will inherit the disease, which is why Stuart never wanted to have kids. Some people with FSH, if they treat themselves well and are lucky, can live as long as the rest of us and not notice a single symptom. Stuart’s father, Rex Turner, who also had the illness, led a busy schedule throughout his life.
Cambridge Evening News, Tuesday, 2 January 1973
Jailed man told: Illness no excuse for crime
A detective was forced to leap for safety as a 29-year-old muscular dystrophy victim drove through a police roadblock, Cambridge Crown Court heard yesterday. Rex Turner, who admitted a series of thefts and driving offences, was jailed for four years with a warning from Judge David Wild that his illness was no excuse for preying on his fellow citizens.
The court were told that Turner had appeared in court 31 times before and committed the crimes, thefts and driving offences while on bail for another offence.
Turner’s counsel, Mr Frank Keysell, said that parts of Turner’s body were wasting away and his anti-social behaviour might have been the result of his realisation that he would only have a short active life.
Stuart has made a bad mistake treating his muscular dystrophy with disrespect. Because of ‘me eccentric lifestyle’ it has ceased to be a minor complaint. It has taken offence at being soused in strong lager and illegal substances for the last twenty years. It is starting to look more like the considerably worse Emery-Dreifuss muscular dystrophy. It has started to attack his heart.
Stuart is alone in the ward. The lady patients have vaporised. He is drowsy. For much of the time that I sit here on this second visit he sleeps. When he is awake, we tease each other, or I get him some food, or he tells another prison anecdote, which seem surreally out of place in this sanitised hospital room.
‘I knew a fella at Littlehey who stuck three children on a pike fence. His excuse was that he was out on acid. I used to talk to him, you see, and a lot of people started giving dirty looks. He’d said that he’d killed a child, but it wasn’t deliberate. It sounded quite feasible.’
Of course it does, Stuart. Nothing could be more understandable.
‘Then it turns out he’s up for sticking three kids on a spike.’
‘All at once?’
‘Same evening. Three children in one night.’
‘Because of acid?’
‘Yeah, but that’s no excuse. I’ve done acid. The only thing with it is, he was one of the best prison artists I’ve ever seen. He was really gifted with waterpaints. The rough side of hardboard, he used to paint on that. Even though he was a really bad nonce, other people used to pay him £50, which is a lot of money in jail, to do portraits of their loved ones, he was so fucking good at it. He was wicked at art.’
He fiddles with the tube in his arm to admire the injection technique of the nurse, then drifts off. My manly, emotionally embarrassed bonhomie is more than matched by his quizzical detachment. This is interesting, he seems to be saying about his predicament, I wonder if I’ll die from it.
In the afternoon, he is transferred to the specialist heart unit at Papworth, a small town outside Cambridge, where he undergoes a third operation.
When I arrive to visit the next day, he is back in his room, propped up in a metal cot, a white bib around his chest, and a doctor, stethoscope strung round his neck like a seamstress’s tape measure, is giving him the third degree.
‘Do you understand what the situation is?’
Lisping with humility, Stuart says that he does: ‘Yeff.’
‘Good. What has happened so far is this: the first two tries were not successful. Because of your drug abuse, your veins were too weak to hold the connection. That was why you were brought here. This morning we tried a third time to fit a permanent pacemaker, and because of the difficulty I decided to use a top-of-the-range piece of equipment. Fortunately, we were successful, and you now have £5000 worth of technology embedded in your chest. I want you to look after it.’
‘Fankyou.’
‘If it goes wrong and you have to come back here for me to take it out in six months,’ he adds, ‘I can’t afford to give you another. I have decided that.’
‘Fankyou.’
‘That means no needles.’ He points at the still glisteningly fresh tattoo covering Stuart’s right arm where FUCK used to be. ‘No more of those.’
‘No.’
‘No injections.’
‘No.’
‘What do you use?’
‘Meffadone,’ mumbles Stuart, ‘what I drink, and Es, and amphetamines…and smack,’ he admits. ‘And citric.’
‘Pure?’
‘Yeff.’ Part of his new speech impediment is due to the anaesthetic, I tell myself hopefully. This fit of respectability will soon pass.
‘You can’t do that any more. You understand? You’ll have to stop, and stop today. Not next month, not next week–today. The risk of infection from injections is too high. Even with sterilised needles, you can get diseases pushed through from the skin. If you get an infection in this piece of technology I’ll have to have you back here and I’ll have to take it out, and, like I said, I won’t give you another.’
When it comes to reclaiming Stuart’s artificial lifesaver, he is determined not to miss a trick.
‘I know what I’m talking about,’ adds the doctor. ‘I took four pacemakers out of your uncle.’
After the doctor has gone, Stuart tells me that the thought of having to stop injecting pleases him. Now that he’s been told that his next dose of heroin could kill him, he has the incentive to come off completely. He’ll ‘never touch the stuff again’.
I note that Stuart has curiously mistaken what the doctor has said–it is not the heroin that is dangerous, it is Stuart’s method of putting it into his body. No one has ruled out smoking or eating the stu
ff. He can still snort whatever he wants. But I don’t say anything. Drugs have almost killed Stuart more times than he can count and if he stops doing them simply because he’s too dopey to figure out the doctor’s real message, then that is as good a way as any.
‘What did the man mean about your uncle?’ I ask.
‘Uncle Nigger?’ Stuart perks up.
Uncle Nigger turns out to be Uncle Roddy, who earned his nickname as a child because he fell in a puddle one day and came home covered head to toe in mud. Of all his father’s family, Stuart was closest to Uncle Nigger. Uncle Nigger used to give him lectures on how to grow up responsibly, and then go out and get himself nicked for car theft or burglary. Uncle Nigger ended up in a wheelchair because of his muscular dystrophy, and died on his fifth pacemaker.
‘The day I’m like Nigger is Death Day. I’m not going to be no Uncle Nigger.’
Stuart’s wounds, where the surgeon has cut flaps into the flesh of his chest on both sides, are causing him agony, but as a known drug addict, he isn’t allowed proper painkillers. Painkillers might be combined with illegal substances, or overdosed, or sold, ground up and injected.
‘Oi,’ Stuart whispers, ‘did you get what I asked you for?’
I nod and fish a bottle out of my bag.
‘Quick, before the nurse comes, empty the water jug. They’ll never know the difference.’
Stuart, abruptly energetic, takes the emptied jug back and hurriedly splashes it half full of the new clear fluids. Plymouth Gin: £14.99. Nothing but the best for a delicate patient.
‘Fancy a sip yourself?’
Over the next two months, I see little of Stuart. There is an enormous amount to do on the campaign. Ruth and John’s application for an appeal is in July. The committee has newsletters to write, MPs to contact, vigils and protests to organise, press releases, press releases, press releases: Michael Winner has supported the campaign; UNISON is backing the campaign; Alan Bennett (spotted by me, skulking in my neighbourhood bookshop) has signed our petition; Joan Baez is advertising the campaign on her American tour; Victoria Wood and Simon Hughes MP have taken a stand outside Number 10; one of our main antagonists, a city councillor in Norwich, needs to be deflated, which means a press release to reveal that this gentleman once smashed up five police cars with an axe during a drugs raid in Norwich. Another, a sniping, thorn-in-the-side Cambridge councillor, has made loopy hints that the campaign is sending her death threats. A photograph of a gathering of people that includes her has been put through her letter box, she says, and her head is ringed. On the back, the words ‘You’re Dead’. She is telling people that because of the drugs Wintercomfort should be closed down. But I am becoming meaner at this game of local-politics brawling. I have learnt that the best way to defend your morally noble cause is to get nasty fast. Head-butt him while he’s still rolling up his cuffs, so to speak. I contact Private Eye. A piece appears in ‘Rotten Boroughs’ noting that the councillor is on the advisory board of a hostel for the homeless in another part of Cambridge in which nine people have died of drug overdoses in the last year and a half. At a supper party some weeks later a council official whispers congratulations in my ear. She has, he says, lost an appointment to head the city’s housing committee, because of ‘bad publicity’.
Stuart, worried by his own disruptions, drops away. He should be joining in. But he’s gone, vanished.
July comes.
The week of the 11th arrives.
The day of the hearing finally dawns.
The campaign committee–fifteen of us–drive down to London three hours too early, spend the dawn rubbing our hands around hot cups of coffee and sticking posters to the railings, then wade en masse into Court 5, where three amiable judges chat for two hours, Michael Mansfield QC mumbles rotundly through his arguments, the prosecution pats a few counter-arguments back, and Ruth and John are pronounced
Seven months after disappearing into a small hole in a provincial crown court to start five and four years in prison, our old friends re-emerge back to their families’ embrace, under the neo-Gothic portico of the Royal Courts of Justice, arms aloft, laughing faces lit by flashbulbs.
Daily Telegraph, 12 July 2000
Charity Pair are freed to appeal over heroin case
After 207 days in prison, two charity workers were freed on bail yesterday pending a full appeal against their landmark conviction for permitting drug dealing at a homeless day hostel…On the steps of the High Court in London, more than 50 supporters, who have campaigned for their release for seven months, cheered as Wyner and Brock appeared with their families clutching bunches of flowers.
Wyner, a mother of two, who was the director of the Wintercomfort charity in Cambridge, said: ‘I am looking forward to spending some precious time with my children and some private time with my husband. Now I just want to go home and have a decent cup of coffee.’
Brock, who suffered a breakdown in jail and is being treated for depression, clutched his wife and sons, Lloyd, 16, and Dylan, 11, outside court. ‘I am just very glad to be back with my family,’ he said. ‘The opportunity to be with them might be brief and so at the moment it’s a cautious celebration’…His wife, Louise, 39, who has decorated their home in Cambridgeshire with yellow ribbons, added: ‘I just want to take him home.’
Ruth comes out, overtly at least, as she went in: defiant, self-controlled, calculating how best to survive the next step of the fight. Within a few weeks she is writing up her prison diaries for publication and has started working for a prison reform charity. Her determination is a source of awe. Knock her down with a breaker’s ball, squash her flat with a ten-ton steamroller, and still she stands up and carries on walking.
John, a more normal human being, is destroyed. Emptied of direction, desolate in his impotence, he goes back home and sinks out of view.
‘How do you feel?’ he is asked by a respectable woman at the first post-celebration campaign meeting.
‘Like I want to kill a certain person,’ he retorts. ‘You know who I mean.’
We all nod, although there are at least four candidates who come to mind. But that’s not the point. What matters is the wholesomeness of this response. Good for John, we are saying to ourselves–honesty, truthfulness. He’s reached Step One on the Road to Recovery.
‘Then I’ll go out and piss on his corpse,’ he adds.
The lady bristles. John’s wife is abruptly alarmed. ‘You don’t mean it like that, really.’
‘That is exactly how I mean it.’
The subject is quickly changed to the unexpected cost of a recent minibus bill.
Even in the hellfire of unrequited justice there is expected to be propriety.
I browse through Stuart’s diary during these remote weeks. ‘FACIO scapulo humeral muscular DyStRophy’ is now spelt correctly. ‘STUART LOOK SET ALRAM. MAKE SURE ALRaM Button is up not Down. When WeaK up is needed.’ I can understand this entry now. It means not that he is too weak to manage the ‘alarm’ button, but that when the disease is ‘on a bad ’un’ and feels like it is stripping the muscle from his bones, a twenty-minute bus journey into town–to fetch his methadone prescription or attend a job-training course–can exhaust him so much that he has to sleep for twenty-four hours when he gets home. The moments of weakness are, understandably, more common than usual these days. He is another rung down towards what he calls ‘Death Day’–the day when he can no longer make it from his front door to the bus stop in the centre of his village without the help of a wheelchair. On that day, he insists, he will screw up his body for one last flowering of strength and (with the help of a crate of Stella) cripple his enemies, so that it is they who end up in the wheelchairs–so that they may spend the rest of their lives ‘knowing what suffering is about, like they made me suffer’–and then kill himself.
In one sense, suicide is always reminding itself to Stuart: the scars on his neck from failed shots at it, the watchfulness with which doctors hand him his necessary pills, the memories of
his brother’s suicide during Stuart’s second prison sentence, the longing for an apocalyptic revenge against his unnamed ‘enemies’ that would leave him no option but to dispense with himself immediately after.
In another sense, suicide pops out at him by surprise, like a jack-in-the-box. He is almost as startled by it as his friends are. With Jack-in-the-Box Suicide, if I have understood Stuart properly, he is suddenly overwhelmed by a desire to die now, this instant, and by any method to hand. Or it might be the other way round, with equal unexpectedness: he realises that an opportunity has suddenly presented itself and rushes to take advantage. No time for hesitation. No time for a note. Got to get it done before some grave-saver spots what he’s up to. He is too excited, has too little time, to plan this properly. Result: a failure. Every time, a failure. Every time so far, at least. In Suicide Land, Stuart has no more self-control than he has here.
That is why it is wrong to assume that a failed bid is, as the nauseating cliché will have it, only ‘a cry for help’. It could be–is usually in Stuart’s case–just the opposite. Its failure is the result of too great a desperation to get the job done.
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