The Man Who Couldn’t Stop (28 page)

This idea of a continuum between mental illness and normality, and that our position on the scale is determined by how a circuit in our brain functions or malfunctions, feeds back directly to what we know about subclinical OCD. Some people with OCD get annoyed when others use the phrase ‘a little bit OCD'. They think it trivializes their distress. They don't believe that someone can experience their own omnipresent misery in microcosm. I don't agree. As we saw with the results of the Dunedin longitudinal study in New Zealand that revealed the high number of non-clinical cases of obsessions and compulsions, plenty of people do experience life as a little bit OCD. Our reaction when people use the phrase should not be ‘No you don't'. It should be: ‘Imagine that you can never turn it off'.

When I was a young kid and I first saw someone with a guide dog, I couldn't get my head round the idea that some people simply could not see. What about colours? Did they still find other people attractive? I used to try to find out what it was like by closing my eyes and then trying to do day-to-day stuff – walk downstairs or see if I could tell who was approaching from the sounds they made. The longest I ever lasted with my eyes closed was about twenty minutes.

I still have no real idea what it must be like to be blind. But I know how hard those twenty minutes were. People who say they are a little bit OCD probably have no real idea what it's like to have a full-blown mental disorder. But they do know how hard, or annoying or time-consuming or unusual, their little bit is. Now, imagine you can never turn it off.

The beauty of the dimensional approach to mental illness is that nobody need be ‘a little bit' OCD at all. Why be so vague? We can put an exact number on it. Everybody can take the Yale-Brown test. Everybody can have their own OCD score. That's the dimensional approach to mental illness right there. OCD is not present or absent, it's a Yale-Brown score of 6, 11 or 26.
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A dimensional approach – the scoring of certain symptoms on a sliding scale – is especially useful to psychiatrists because OCD is not the only mental illness that lurks at subclinical levels in the general population. Signs of subclinical psychoses – the most severe conditions – are everywhere. Surveys show that about a quarter of normal people say they have some experience of hearing voices in their heads, or of their own thoughts being spoken aloud. In 1999, psychologists in London measured what they called delusional ideation in 272 normal people and found that most of them endorsed what could be considered symptoms of psychosis. Almost half said they believed in the power of witchcraft, voodoo or the occult, and six in ten believed in telepathy. More than four in ten felt they were very special or unusual people and more than a third thought there was a special purpose or mission to their life. When the scientists compared the scores from the normal population and the results from similar tests performed with patients at an acute psychiatric unit, they found that one in ten of the people considered normal scored above the average rating of these medicated and ‘floridly psychotic' patients. Now, imagine you can never turn it off.

 

SIXTEEN

Final thoughts

This should probably be the point in the book where it all comes together. Having discussed the possible causes of OCD – the genetic, evolutionary, family, social, Freudian, environmental, infectious, psychological, medical, traumatic and just plain unfortunate pressures that might contribute – I should reach a triumphant and emotional conclusion. I should explain my own OCD. It was my parents who did it or my childhood fear of dogs, or the shock when I wrapped myself and my brand-new ten-speed bicycle around a barbed-wire fence at high speed. The sore throat I had when I was 6, or 8, or 13. The betrayal by the boy I thought was my friend who called me into a deserted school toilet so four of his mates could hit and kick at me in the dark. That my mother had a stroke and couldn't hold me as a baby, and that my dad – an arch rationalist – can't bear to look out of high windows. The trauma of Stoke City's relegation in 1985 and 1990 (by 1998 it was too late). The psychological conflict I suffered and buried when I was cruelly separated from my faeces and potty trained. The death of Sebastian my pet rabbit. That fucking Aids advert.

It's not there. I don't know. A teenager in the United States said his OCD, centred like mine on an obsessive fear of Aids, started when he almost slipped and fell to his death from a high cliff. I've had near misses and I've fallen off my share of things and into things, but I seem to have bounced.

What I do know is that my OCD probably didn't start when I was 19. That was when I went full-blown, but the signs were there before. I was subclinical. On a caravan holiday in the late 1970s, I remember that I checked the gas fire was switched off dozens of times before I could sleep. We didn't have a gas fire at home and my dad had told me it was important that we didn't leave it on. He and Mum slept in a different room. My little brother didn't know about the danger. It was my responsibility.

As a 10-year-old I would write the names of people who had wronged me in a special book. It became a nightly ritual that seemed to help dissipate anger and hurt. If I had an argument and then bad thoughts about my parents, I would have to punish myself and undo the damage by trying to sleep without the duvet. When I was 13, having watched the black-and-white film the previous Sunday, one day at school I felt like I had to hum the ‘Dam Busters March' to myself during a maths lesson. I did it for months, but only in maths.

One of my earliest memories is a feeling I had to tap out numbers from one to ten when I heard someone say them out loud. I was probably 5 or 6 years old and sat cross-legged in assembly hall at my primary school. As I tapped the floor I remember a teacher watched me. She gave an awkward smile. The previous day I had learned two things that were important: that it hurt when someone hit you in the face. And that it hurt more when someone let you down.

This is probably the closest we will get to the genesis of my condition. It could of course be a creation myth: It was summer and we were playing on the field behind the school. The grass had been mown that morning and smelled sweet. I heard cries and saw a friend pinned to the ground by an older boy. Just like in the cartoons, I threw myself at the assailant and we kicked up the cut grass as we rolled. The older boy finished on top, and, startled and annoyed, started to punch me. My friend stood and watched. Worse, as I spat the grass from my mouth and wiped tears on my blue Miami Dolphins T-shirt as we walked back together when the bell rang, I heard my friend say there was no space in our gang for boys who cried. I saw the older boy at assembly the next morning and he ignored me. When I saw my friend sitting a couple of rows away, I wanted to cry again. Instead I started to count.

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This is not intended as a self-help book. But if it does help, if it connects to someone directly affected by the issues it raises, or helps someone close to them to understand, or if it can merely prise open the eyes of others, then I am glad. Something good will have come from what was a frightening and miserable experience. My strange thoughts will finally have meant something.

If you are distressed by intrusive thoughts, if you think you might have OCD, then the bad news is that it probably won't go away by itself. The good news is that scientists are constantly finding out more about the condition and the best way to diagnose and treat people with it. The idea of mental contamination, for example, is really starting to take off. It just takes a while for these ideas to soak through to clinical practice, for even experienced and overburdened mental health workers to catch up.

Not everyone who wants professional help can get it. Tell someone about your thoughts, a friend or a relative. If you're worried about their reaction then show them this book first. Most likely, they will have those kinds of thoughts too. The only difference is that their thought factory works differently from yours. Try the Internet. There are web forums and blogs that allow people to anonymously share their stories with others who will understand. OCD charities help people like you – confused, frightened, convinced your thoughts are different – every single day. Tell someone. If you want to defeat a vampire then you can chase it with a wooden stake or holy water, or mess about with crucifixes and garlic, or throw seeds at it to count, but it's more effective to throw open the curtains and let in the light.

If you find it hard to talk about your thoughts then you are not alone. When I signed the deal to publish this book, I told the publishers they could not announce it. I needed to tell my parents and my brother and my friends about my OCD first. If it helps, the charity OCD-UK has produced a simple introduction to the condition that you can print off its website and give to people. It's intended to help break the ice with health professionals, but will work just as well on friends and family. There is also a specific icebreaker for those who have intrusive thoughts about hurting children. Both are published as an appendix to this book.

It's not often possible to cure OCD in the conventional sense. Even on the drugs and after CBT, if they work, then for most people it's a bit like being a recovering alcoholic. You are always a certain number of days past your most recent obsessive-compulsive episode. You are always one drink from disaster. Most people with OCD can't be cured, but they can be helped to manage their condition and they can be helped to feel better. In many cases, they can feel much better. I feel much better. But I will probably always have OCD. The psychiatrists who helped me have warned that it will be a lifelong struggle. My case is still open and I am still on their books. I am still their patient. I have an open invitation to go back and see them again if I think it's necessary.

I don't think it will be. My OCD rarely causes me distress now. It's still a constant companion and the intrusive thoughts on HIV continue to come – the snowflakes still tumble from the summer sky. But I have learned how to watch them come and go. They don't settle in my mind, not always. But every now and then, one catches me unawares.

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In the spring of 2012, life was pretty good. It had been a year since I last saw the psychiatrists at the mental health unit, and almost eighteen months since they had told me to rub my eyes again. A baby boy had joined our family and my daughter was flourishing. I had spoken to a literary agent about writing a book on OCD and had started to sketch out some ideas.

I went for a skiing holiday to the French Alps with some friends. I'm no Markus Wasmeier but I love to ski. It's the activity that comes closest to recreating the impact of a Stoke City goal. When I throw myself down a mountain on skis, the intrusive thoughts can't touch me. And I don't need to count backwards from 999 to keep them away; the combination of exhilaration, physical effort and the concentration required to keep me upright does that for me.

About halfway through the week, on an early run before the morning warmth had melted the crispy ice layer that coated the snow, one member of our group had a nasty fall. He wasn't wearing a helmet and his face took the full force. He was briefly unconscious and his mouth and nose were bleeding badly. I tend to tense up when there is blood around and I was happy when the others agreed to my suggestion that I would head down to find help. As I clicked my boots into my skis, I saw one of my friends pass our fallen comrade her blue water bottle.

Later that morning, the temperature had soared as the sun flew high in the thin mountain sky. There were two of us now, and we laughed and poked fun at each other as we struggled with a bumpy mogul field. The secret, apparently, is to turn the skis on the top of the bump, just as the secret to beat OCD is not to perform the compulsions. It's almost as hard. It's even harder for someone on a snowboard, as my friend was, so she took a shortcut out and was waiting for me at the bottom. Drenched in sweat, I pulled off my hat and scarf. She removed the lid and offered me her water bottle. Her blue water bottle.

I looked at the bottle and at her. As I hesitated, she put it to her lips and took a long slurp. Then she passed it back to me. She didn't know about my OCD. She didn't know that I had spent more than twenty years trying, largely successfully, to avoid moments like this. She couldn't hear the screams in my head that urged me not to take the bottle. She didn't see the panic flash across my mind. I took the bottle, and I took a drink from it. I passed it back with a mumbled thank you. She put the lid back on and she moved on with the rest of her life.

In therapy, the subject of what is an irrational thought and what is therefore a compulsive response to an obsession was one of the things we discussed. Most people would be anxious about HIV if they jabbed themselves with a bloody needle they found on the floor, but most people, I was surprised to learn, would not be anxious about touching a door handle if they had a bleeding finger. Most people, it turns out, though you probably know this already, are more concerned about them dripping blood onto the handle than they are that anything on the handle will pass into their blood. Most people are weird.

What would most people do? That has become my response to an intrusive thought. If most people would do something, then, to keep away the nonsense of OCD, so must I. That was another part of my treatment.

So when my friend took a drink from the blue bottle that I feared was contaminated with my other friend's red blood, I knew what I had to do. It wasn't easy, but she wouldn't have noticed anything amiss. In the time it took me to raise the bottle to my lips and take a drink, two decades of intrusive thoughts and my responses to them flooded my mind. HIV is a fragile virus. It can't live long outside the body. Lots of infected blood would have to enter my mouth. It would have to get into my bloodstream. I have no open cuts in my mouth. The virus would perish in the acid of my stomach. My injured friend is married, he has a child and his wife is pregnant. They test for HIV in pregnancy. The water would dilute it. Did he actually bleed into the water? Maybe it's a different bottle. He doesn't have Aids. How can you be sure? How can you be sure it's safe to drink? We can't be sure of course. That's the point.