The Man Who Couldn’t Stop (25 page)

Part of the reason that Charles Walker wanted to speak out, he said, was to tackle prejudice. That's a goal that lots of people credited me with, when they found out I was writing this story of OCD. They assumed I wanted to raise awareness. I didn't, not at the beginning at least. I hadn't faced prejudice, because I had kept my OCD to myself. Perhaps I feared prejudice and that's why I kept it a secret, but I don't think it was that either. I just didn't want people to know I was a practising fruitcake. I didn't want to accept it myself.

The reason it is important to raise awareness, I realize now, is more fundamental. The reality of OCD is scary for all involved. But it's not dangerous. Yet it can be, especially for people who believe the condition is nothing more serious than a need to wash hands. That's why it's necessary to show and talk about the reality of what OCD is and what it is not. That's why there's no bar of soap on the cover of this book.

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On a rainy day in Wales in November 2012, the charity OCD-UK organized a series of talks and discussions at Cardiff University. On the bill were numerous experts – academic psychologists, psychiatrists and former sufferers turned advocates. And in the audience were people from across the UK with OCD. A room full of two hundred people with OCD sounds like the set up to a joke, the punch line of which would be something like ‘and you should have seen the queue for the sink'. But for the people who attended it was a serious matter.

Many had brought along friends and family for support. Teenage girls were there with a best friend. Men in their twenties were accompanied by both parents. I heard one husband tell his wife, in the queue for their lunch, that only now did he understand her. Many of the attendees were probably confronting their OCD for the first time. Certainly some were speaking in public about it for the first time. Lots were in tears, while others sat in silence and shook their heads gently or closed their eyes as they listened.

Yvette sat a few rows behind me, towards the back. A few people craned their necks to look as she indicated she wished to speak and asked for the microphone. By the time she handed it back, all eyes were on her. Yvette wasn't keen to cooperate for this book, so what appears here is what she said at the open meeting, which was broadcast on the Internet, and no more.

Yvette (not her real name) was a secondary school teacher. She suffered from OCD and was visited by a particular type of intrusive thought. When Yvette drove her car, she could not shake the feeling that she had been in an accident. She worried that she might have knocked someone down as she drove through dark country lanes at night.

This is a fairly common obsession. The driver finds their thoughts are not relieved by a quick glance in the rear-view mirror, so sometimes they stop and reverse or circle around to check. They might get out and check their car repeatedly for damage, paint or blood. Some ring hospitals and ask if any victims of road traffic accidents have been brought in. One night, convinced she had hit someone yet equally certain that she hadn't, Yvette called and checked with the local police. No, the confused officer on the phone replied, there had been no such accident. But, why do you ask? Who are you? The police reported Yvette's enquiry to her school's headmaster, who then suspended her for nine weeks, while the school tried to decide if Yvette was a danger to the children. She had worked as a teacher for nine years. The kids she taught, Yvette said, understood her condition better than her colleagues.

Of course, those who work with children must be checked out. And Yvette was later able to return to work. But others are not so fortunate. Mental health advocates regularly deal with cases of people who have been separated from their families because a medical professional became alarmed when they reported harmless obsessions. Even when the facts of OCD are made clear, and the individual reunited with their family, the problems and the injustice can continue. If they go for a job that demands a criminal records check, and many do – in counselling or charities, for example – then the question of their mental health is often raised. In a section of the records check that asks for other relevant information, chief constables have the discretion to write: ‘We are aware that this person was detained for a mental health problem at this institution. We are not aware that they are a threat to adults or children.' Would you give them a job?

Charles Walker raised this issue in his speech to Parliament. ‘I am afraid that in our ultra risk-averse world, that is a career death sentence for those people.' In September 2012, after pressure from campaigners, the UK government did tweak the emphasis of the records check with respect to mental illness. Police are now asked only to report incidents they believe are relevant. The changes introduced an appeals procedure too. It remains to be seen how effective they will be.

A more fundamental way to sort this out is increased awareness. At first I thought awareness was a worthy sentiment but too vague and nebulous to address directly, but I was wrong. The more that OCD is cemented in the public consciousness as a behavioural tic, the more times that a Hollywood celebrity who likes to keep their house tidy describes themselves as having OCD, the more times companies cash in on the apparent quirks of the condition as a gimmick, then the more times people like Yvette suffer. Some National Health Service trusts in the UK demand their psychiatrists refer any parent who reports intrusive thoughts about harming children to child protection authorities.
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One impact of that can only be that more parents with OCD fail to seek help, and so continue to believe they are a danger to their child when they are not.

We're getting there with other mental illnesses. Schizophrenia is no longer acceptable shorthand for a split personality – its use in that way was banned by the style guide at
The Guardian
, which told writers how to use language. People with autism are not expected to memorize and recall the order of three combined packets of cards. Some who suffer from depression may still be told to pull themselves together, but hopefully fewer than a decade or so ago. OCD is perhaps a more serious challenge because fewer people regard it as a serious illness.

The US television show
Monk
features a policeman with OCD – the defective detective – whose obsessive attention to detail gives him superior ability to solve crimes, even though he regularly has to interrupt interviews or stop pursuits of villains to touch and arrange objects. Jack Nicholson won an Oscar for his quirky and humorous portrayal of a misanthropic obsessive-compulsive in the film
As Good as It Gets
, who skipped down the street with a grin on his face to avoid cracks in the pavement.

Fed up with having to watch Nicholson play OCD for laughs, the Welsh actor and writer Ian Puleston-Davies co-wrote what he hoped would be a more realistic portrayal. Called
Dirty Filthy Love
, and with Michael Sheen in the lead role as an architect with both OCD and Tourette's, the 2004 ITV film won a Royal Television Society award the following year. In the two hours after it was screened, OCD-UK received 2,000 phone calls.

Puleston-Davies, who as I write this stars in the long-running British soap opera
Coronation Street
, has severe OCD and has described how intrusive thoughts can join him on stage – forcing him to think about when he last went to the toilet rather than his lines in a play. He based the script of
Dirty Filthy Love
on his own experiences. But even he admits that some scenes are unrealistic, particularly those when the lead character goes to a self-help group. Puleston-Davies had originally written the group as they appear – like a class sat around to learn how to speak Spanish. This was too dull for the producers. The final screened version, to his despair, looked more like something from
One Flew Over the Cuckoo's Nest
– all white clinical walls and intense oddballs who rock in their chairs.

OCD gets a raw deal in the media, especially film and television. It's pretty clear why: obsessive thoughts are internal and hard to film, so the focus tends to fall on the compulsions. The distress is invisible, but the checks, the hand-washing and the lining up of shirts in a wardrobe can appear sinister and funny, sometimes both at the same time.

In 2009, Paul Cefalu, an English professor at Lafayette College in Pennsylvania, investigated this media misrepresentation further. He published an article in
PMLA
, the house journal of the Modern Language Association of America, called ‘What's So Funny About Obsessive-Compulsive Disorder?' ‘What distinguishes representations of OCD from depictions of other mental disorders', he wrote, ‘is the frequency with which OCD is treated with humour and levity.'

Earlier incarnations of obsession were portrayed – by Edgar Allan Poe and others – in melodrama, tragedies and Gothic literature, Cefalu said. Yet more recent books and films suggest that sufferers of OCD ‘can always be counted on to make us laugh'. The reason, and the answer to the question in the title of his essay, he decided, is irony. ‘Not only is there something fundamentally ironic about the extent to which obsessives with OCD concentrate on tasks that they believe ridiculous, but compulsions, usually orchestrated to relieve underlying obsessions, tend to worsen the motivating obsession.'

OCD is funny, he says, because it is based on incongruity, and incongruity is funny. The action makes no sense, but even after it acknowledges its own senselessness, it carries on regardless. That makes OCD postmodern irony; slapstick misery.

Funny or not, some psychologists have suggested that peer pressure and societal expectations are crucial to the perception of obsession. People with OCD, they suggest, might experience less distress if they live in cultures where commonplace superstition makes their mental and behavioural rituals more acceptable. (If everyone around you touches wood for luck, you might feel less bothered about having to touch it compulsively to see off intrusive thoughts.)

Such acceptable and unacceptable cultural context for obsessions has been highlighted by the US academic Lennard Davis to explain the rise in the visibility and apparent prevalence of clinical OCD in the last few decades. In his 2008 book
Obsession: A History
, Davis writes:

In the requirement that the behaviours produce marked distress in the person, how one arrives at distress is crucial. The same behaviour in different cultures might produce different results. In other words, it takes a community, a culture, a family to make an obsessive. If your behaviour, say the meticulous lining up of objects, is seen as an oddity, you will be distressed that you do it. If it is seen as the useful quality of a master bricklayer, then you will not be distressed.

Davis, a professor in the Departments of English, Disability and Human Development and Medical Education at the University of Chicago, argues that obsession – and OCD – is better framed as a disease entity, a temporary and fluid definition that shifts with culture and history; sometimes useful and valued, but sometimes malevolent and feared. Dickens's huge output, he says, shows he was an obsessive writer. We demand that lovers are infatuated with each other in films. We respond to driven athletes and single-minded musicians.

Plenty of psychologists and psychiatrists have taken issue with his argument already. It misleads to bundle all these different types of obsessive behaviour together, they say. It conflates the general definition of obsession and the clinical term, and in doing so it dilutes the significance of the latter. Here's my objection: when Davis writes that the distress caused by repetitive behaviour, to line up objects say, is subjective, he misses a crucial point. In my experience, and that of most people with OCD I've met, the compulsive behaviour does not cause distress, it lessens it. That is why we do it. As the character Mark Renton in Irvine Welsh's 1994 novel
Trainspotting
puts it to explain why he and his friends take heroin: it feels good. ‘Otherwise we wouldn't do it. After all, we're not fucking stupid. At least, we're not that fucking stupid.'

My paternal great-grandmother's temper was legendary. It was said she could start a fight in an empty room. My OCD can cause me distress in an empty room. It doesn't need a community or a culture or a family to disapprove. I'm not that fucking stupid.

Davis is not alone in the quest for possible benefits to OCD. Plenty of writers on the subject, including some who should know better, are keen to point out the upside of a personality that repetitively focuses on detail. Armed with little more than some vague references in his diaries to how his mind would fix on an object and would sometimes be taken by insane feelings of anger, some websites dedicated to mental illness claim that Charles Darwin had OCD. Others, in an apparent effort to challenge the view of OCD as a handicap, have credited Winston Churchill's obsessional nature for giving him the strength of character to see through the dark days of the Second World War. OCD helps defeat global fascism! Way to go Winston.

I can't think of a single positive thing about OCD. And I've thought about OCD a lot. In 1785, after a particularly rough Atlantic crossing to Southampton, the US inventor Benjamin Franklin designed a sea anchor – a submerged sail a ship could tow behind itself in the water to slow and stabilize itself in heavy seas.

People who live with OCD drag a mental sea anchor around. Obsession is a brake, a source of drag, not a badge of creativity, a mark of genius or an inconvenient side effect of some greater function. That's not to say that some people with OCD don't achieve great things. But – given what we have seen of how OCD might develop – that's only what you would expect, just as some people with OCD are criminals, teachers, politicians and writers. Some have it worse than others and some perform better than others. Certainly, some people with severe OCD are quite brilliant.