by Will Storr
Before I travelled up to visit Rufus, Deborah and Top Dog I spoke with Dr Trevor Turner, consultant psychiatrist at St Bartholomew’s Hospital in East London. Turner – author of books on schizophrenia and an ex-Vice President of the Royal College of Psychiatry – told me that encouraging schizophrenics to ditch their medication is ‘extremely dangerous.’ He admits that Romme and Coleman’s Hearing Voices Network have been responsible for some good work in ‘improving patients’ positive feelings about themselves’ and acknowledges that trying to turn the voices into a friend is ‘absolutely right.’ But he also has an interesting take on Professor Marius Romme’s complaint that one in a hundred people die on the medication. ‘That’s pretty good, actually, because fifteen per cent of people with schizophrenia die from self-neglect or suicide because of the awful nature of their experiences.’ The reduction in the suicide rate of medicated patients is, he says, ‘fantastic.’
Voice-hearing itself, according to Turner, is the dominant symptom of 90 per cent of schizophrenics. ‘It’s a bit like having a temperature is a symptom of infection. It’s showing your brain’s overactive and is trying to pick up sounds that aren’t there. It’s playing tricks on you. It’s increasingly well established that schizophrenia is a disease. There’s evidence aplenty. When you give people anti-psychotics, their voices melt away and they become better again. You can do examinations of brains that show clear abnormalities in what’s called the third and fourth ventricle. Scans have shown significant brain shrinkage in people with schizophrenia as well.’
We know that schizophrenia is a physical disease, then, not only because we can see evidence of it in the brain, but because the drugs for it work: anti-psychotics block the chemical dopamine, and this demonstrates that schizophrenics either have too much dopamine, or have too many dopamine receptors. But experts such as Professor Richard Bentall meet all these arguments with the same objection. How do we know these brain abnormalities and the dopamine-system faults are triggered by disease? Perhaps they are caused by traumatic experiences. ‘There’s compelling evidence that traumatic experiences can alter the structure of the brain [in these ways],’ says Bentall. ‘There’s also compelling evidence that the dopamine system can be affected by experiences of unpleasant events. And there’s very good evidence, that has appeared in the last two years, that shows that brain volume shrinks with a lifetime dose of anti-psychotics.’
When I mention Bentall to Turner, I am startled by his reaction. What follows may seem rather mild to the casual observer, but as criticism from one scientist to another, it is on the sharp end of serious.
‘Bentall’s highly selective in his sources and he generally uses individual anecdotal case results rather than carefully structured studies,’ he says. ‘People like Bentall are stuck in the belief system that it all derives from childhood experience. That’s the credo of analytical thinking like his. It’s a well-known trope in the history of anti-psychiatry. The most anti-psychiatry people on the planet are the Scientologists, who regard us as torturers, murderers, Holocaust-deniers. That, to some degree, is where this notion comes from. It’s anti-medical. It’s a belief system, not a scientific one.’
When I bring up Romme’s study, in which he claims to have found that 80 per cent of voice-hearers have suffered significant early trauma such as abuse, Turner replies flatly, ‘That’s completely untrue. There’s no evidence for that at all. The prevalence of child abuse is in debate anyhow. You can’t find it, you can’t see it, you can’t smell it, you can’t touch it but sometimes, if you spend enough time digging around in therapy, you can get someone to think of things. Thirty per cent of our memories are false memories anyway. It doesn’t matter who we are.’
As Turner has wandered off the point, slightly, so has my concentration. I have a moment of panic when I think I have misheard him. I have to double check what he just said, because I can hardly believe it.
‘Did you just say thirty per cent of our memories are false?’
‘If you look at psychological studies,’ he says, ‘about twenty to thirty per cent of what we think are real memories are probably false.’
I make a hurried note. If this is true it represents a potentially crucial lead in my search for the source of irrational beliefs. Before I let Dr Turner go, though, I have one final question.
‘Have you heard of Dr Rufus May?’ I say.
‘He’s one of these self-appointed-guru-type people who thinks he knows better than everyone else,’ he says. ‘He’s a liar and a charlatan.’
Up on the crest of a rain-soaked Yorkshire hill, the phrase ‘he’s a liar and a charlatan’ clatters to the floor of Rufus’s kitchen like a hundred saucepans hitting the tiles.
‘Wow,’ says Rufus. He takes a moment to gather himself. ‘I guess we’re just pushing in completely different directions. He’s kind of managing people’s distress. I’m trying to help people heal.’
I tell him that Turner said that the voice is a symptom, like a temperature. He turns to Top Dog.
‘How do you feel being likened to a temperature, Top Dog?’ he asks.
‘I want to find this man. He needs to be very afraid.’
Richard Bentall is somewhat less equanimous than Rufus. ‘Turner’s an idiot, frankly,’ he says, when I call him. ‘His comments are stupid on many different levels. Let’s start with one of them. There is no such thing as “the cause” of psychosis. There’s not one cause, there are many interacting causes. I’m not claiming that sexual abuse or trauma is “the cause”, what I’m claiming is that it is a major causal factor.’
For his meta-analysis – which, at the time of writing, is still undergoing peer review – Bentall found nine studies that looked at the question of whether there is a ‘dose–response relationship’ between abuse and psychosis. That is, do increased ‘doses’ of abuse reflect an increased likelihood of breakdown? ‘All but one of the studies finds a dose–response relationship,’ he says. ‘That is very powerful evidence of cause. So for him to say that I’m being unscientific – he’s being a completely unscientific idiot.’
‘Okay,’ I say. ‘Sorry, I don’t want to cause … but I have to … Trevor also said that you value anecdote over careful study.’
‘I’m not talking about anecdote at all!’ he says. ‘I’m talking about rigorous epidemiological studies. But anecdotes are important – if he listened to a few anecdotes from his patients he might be more convinced himself. The great tragedy about this is that traditional psychiatrists don’t listen to their patients at all. Turner is a very annoying person.’
‘This is the last one. He said hearing a voice was like having a temperature.’
‘I shudder, basically. I really shudder.’
*
From its roots in Maastricht and Manchester, HVN has gone on to help thousands of patients in twenty-two countries get off medication and in control of their voices. Today, you’ll find Ron Coleman about as far away as you can get from that King’s Cross platform without leaving the British Isles. On a far northern corner of Lewis, in Scotland’s Outer Hebrides, he lives with his dog and his chickens and his wife and two children and the other invisible people that he carries around in his head. Rather than submitting to a medicated life in the psychiatric system, he instead sought counselling for the guilt that he felt around his abuse.
‘I found myself innocent,’ he says. ‘And things got better.’ He began negotiating with his voices: telling them to pipe down; you’re wrong; I’ll give you fifteen minutes this evening if you’ll behave for the rest of the day.
They’re mostly gone now. But not entirely.
‘The priest’s still there,’ he says. ‘When I hear him, I know I need a break. His power used to be rooted in the guilt, so I can make him go away pretty easily.’ Other voices are more welcome: they remind him of facts he has forgotten and offer him helpful references when he’s doing his talks. ‘That happens regularly.’ But there is another voice, too. One that he has no desire to shoo away.<
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Every year, on the anniversary of Annabel’s death, Ron will take a gin and tonic to a private place and sit alone and catch up with her. ‘We just talk about how things are; how my life is,’ he says. ‘I’m happily married now, and I love my wife, but that doesn’t mean I’ve stopped loving Annabel. My wife understands that. If madness is a lifelong condition then love certainly is.’
‘It must be a bit heartbreaking, though?’ I ask.
He sighs, and looks off into the deep horizon, where the blue, domed sky kisses the cold northern sea. ‘I guess there is that element to it,’ he says. ‘But it’s what everyone does, isn’t it? If they’ve lost somebody, they still talk to them. The only difference with me is that mine talk back.’
10
‘They’re frightening people’
It took just one minute, on a Thursday morning in the middle of July. One minute, on a grey humdrum day in a small Manchester office. One minute, for the safety and safe memories of a family to be breached.
There were two men in separate rooms, each working quietly at their computers. At 09:02, the phone rang. The elder man, who had been checking his emails, lifted the receiver.
‘Hello, this is Richard Felstead.’
‘Is this the brother of Carole?’ asked the caller.
‘That’s right, yes.’
‘I’m calling from the coroner’s office in Battersea. I’m very sorry to tell you that your sister Carole was found dead in her flat on the twenty-ninth of June. I’m sorry it’s taken so long for us to get in touch. Carole’s next of kin – she told us there was no family. But a letter was found, in her flat. It was from you. So I thought I’d let you know.’
It was 09:03. Richard was breathless with crying.
‘I’ll …’ said the coroner’s assistant. ‘I’m sorry. I’ll call back later.’
Richard walked to the next-door office, where his brother David was entering addresses on a database. When he told him the news, David didn’t turn around. He stopped typing, he leaned his head all the way back and he said, very quietly, ‘Oh.’
The telephone rang again. It was a different caller – a woman, but this one was speaking in a strange voice.
‘Are you Richard?’
‘Yes.’
‘I know you’re not one of the ones that harmed Carole.’
‘Who is this?’ said Richard.
She sounded slow, drawn out, modulated.
‘I’m Carole’s next of kin.’
She sounded weird.
‘Yes, but who are you?’
‘That’s not important.’
‘Do you know how Carole died?’ said Richard.
‘She had a very difficult childhood.’
‘What was wrong with her? Was she sick?’
‘As I said, she had a very difficult childhood.’
‘No, no, hang on a minute. That’s a lie. Carole had a great childhood. Who is this?’
‘I’ve already told you. I’m Carole’s next of kin.’
She was patronising now, like she was admonishing a naughty child.
‘But – give me your name.’
‘My name is not important. I just wanted to tell you that it’s Carole’s funeral tomorrow. She’s being cremated. People have taken time off work. It’s very important that the cremation goes ahead.’
Richard became furious.
The phone went dead.
Richard and David drove to Cheadle to collect their father, Joseph, from the factory where he was employed as an engineer. They knew many of the men that Joseph worked with. As they walked past their tool-strewn benches, his colleagues tried to say hello, all right?, mornin’ boys but it quickly became obvious that something was wrong. They watched the brothers approaching Joseph’s bay, where he was busy welding. When he saw his sons, he smiled and wiped his hands clean. His face fell when he registered their expressions. And then they had to tell him that his daughter was gone.
When the three men arrived at the family home in Davenport, half an hour later, their mother was delighted to see her husband. ‘Oh, Joseph!’ she beamed. ‘Have you come to take me shopping?’ The other two Felstead brothers soon joined them – first Anthony and then Kevin, whose lasting memory of that morning is the sight of his mother: ‘Finished. On the floor. Drained. Shattered. Gone.’
The family began talking. Nothing made sense. Who was the mysterious caller who said she was Carole’s ‘next of kin’? Why did she talk of a ‘difficult childhood’ when Carole was happy, popular – spoiled, if anything? And how could Carole die? She was in the midst of a successful nursing career down in London. She was only forty-one. Why had it taken two weeks for the family to be informed? And how could there be a funeral taking place tomorrow?
Joseph stood up.
‘She’s not getting cremated tomorrow,’ he said. ‘I’ll put a stop to it.’
‘You can’t stop a funeral, Dad!’ said Kevin. ‘How do you stop a funeral? What, are you going to march in there and take the coffin?’
Joseph telephoned the coroner’s assistant. She brusquely informed him that now the family had been discovered, the funeral would be halted regardless. But instead of relief, Joseph felt troubled. Why was her tone so short? So angry? The coroner told him: ‘We’ve been handed a life assessment that your daughter wrote. It’s very upsetting.’ It was six pages, typed. It said: ‘My parents were abusive in every way imaginable: sexually, physically and emotionally. I grew up in constant terror. At three years of age, my mother smothered my sister. She sat me on top of her and then set the house on fire.’
Joseph was astonished.
‘No, no, hang on a minute,’ he said. ‘Had she been ill or something? Had she been sectioned?’
The coroner’s assistant said, ‘Yes.’
Throughout the coming weeks, there came more questions. Officials dealing with Carole’s death kept mentioning a ‘psychiatrist friend’ who accompanied her to many of her medical appointments and seemed to have some role in the cancelled funeral. And then there was this mysterious ‘next of kin’, who, to the family’s fury, emptied Carole’s flat of her possessions. On 6 August, Joseph was in conversation with the police inspector who was involved in the case when something occurred to him. ‘This psychiatrist and this next of kin,’ he asked. ‘Are they the same person?’
‘That’s right,’ said the inspector. ‘Dr Fleur Fisher.’
Shortly after the call, Joseph searched the Internet for her name.
Most recently (1991–96) she has been the Head of Ethics Science and Information for the British Medical Association.
*
When he was discussing the notion of sexual abuse causing people to hear voices, Dr Trevor Turner said something that – even after learning all that I have – managed to stagger me. ‘Thirty per cent of our memories are false memories anyway. It doesn’t matter who we are.’
If Turner is correct it suggests that all of us are far closer to that fuzzy, imaginary line than I could have imagined. I used to think of creationists as existing on one distant end of the continuum, with the bland massed-army of the scientists on the other. Now, in my mind at least, they have all shuffled a little closer. I am sure that the doctors Nick Mann and Anne Oaklander are correct, in that many Morgellons patients have been incorrectly diagnosed as suffering from DOP. Those sorry souls are victims of the kind of binary, dismissive thinking that I worry is evident among some Skeptics. In their haste to dismiss the ranting, scratching dispossessed, subtler truths are being missed. The itch might not be caused by tiny wasps, but in many cases, it does appear to be caused by something. Just because they are wrong about one thing, it hasn’t necessarily followed that they are wrong about it all. And yet they are crucified for making one mistake. They are denounced as crazy and crazy is what many have become.
Ron Coleman’s long battle against the scientific establishment is brilliantly illustrated in his observation that, ‘In 1994, the Royal College of Psychiatry called the Hearing Voices Network �
�the most dangerous organisation in psychiatry.” In 2000, they described us as “one of the most important.”’ Just because he was mad and biased by his own experiences and fighting against senior scientists and years of consensus and orthodoxy, it didn’t mean that he was wrong. Indeed, what consensus there is among experts in schizophrenia these days says that both extremes have a point – that environmental and disease causes are probably involved in ways that have not yet been precisely fathomed. The psychiatric establishment have felt the lunatic’s embrace and, over the last twenty years, have slowly yielded.
Most humans, not least myself, are an incoherent mess of madness and sanity. It is not as simple as I had once believed, judging who is rational and who is not. And what I am to learn over the many weeks that I will spend investigating the strange death and even stranger life of Carole Myers is that, when everyone believes they are telling the truth, and yet you are submerged in a milieu of dangerous delusion, it can be especially hard to tell.
The Felstead family’s search for answers to the many mysteries surrounding Carole’s decline is now in its sixth year. Endless letters, phone calls, hours of legal research and long nights on the Internet have resulted in the collection of hundreds of documents and the generation of yet more questions: angry ones about individuals they believe to have been malign presences in her life; strange ones about startling and little-known corners of human psychology; sad ones about the life and death of the kind and sparky woman that they still miss every day.
When I first contact the Felsteads, to ask if I can write about Carole, they pass me a telephone number. Discovered in Carole’s phone records, it belongs to the woman whose role in the tale is, they are convinced, central: that of the ‘next of kin’, Dr Fleur Fisher. The day before I travel to Stockport to meet them, I dial it, nervously. A confident-sounding woman answers.
