by David Adam
* * *
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.
* * *
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.
I might have escaped from the thoughts, but a couple of hours later the bottle came out again. ‘Ha! I hope he’s right when he told me he doesn’t have any blood-borne diseases,’ she said as she took another gulp.
I didn’t ski the next day, I surfed the Internet. I read how HIV was a fragile virus. How it can’t live long outside the body. How lots of infected blood would have to have entered my mouth. How it would have to get into my bloodstream. How the virus would perish in the acid of my stomach. I turned the computer off and then turned it back on and read it all again. I found and tried to decode scientific papers on virology. And with every Google search I found page after page of people on Internet forums dedicated to OCD and to HIV who were desperate for the same impossible certainty as I was. I told my
friends I was working on the book.
The anxiety came and went and then came back again every time I turned the computer off and on. This is where the therapy helped. I knew what I had to do. I had to ignore the thoughts, resist the compulsion, let the anxiety build, and then let it decay to extinction all over again. That’s what I’ve learned. I’ve done it many times since. The hardest thing is that the anxiety each time feels just as severe as it has always been. The fear is as acute. The sense of impotence is just as debilitating. It feels like I am thrust right back into the maelstrom again, each and every time. But I trust, and I know, that it will pass.
* * *
The journey is almost at an end, but before we finish I must offer sincere apologies to anybody who reads this book and is offended by the way I have throughout used HIV as something to be feared and avoided. I have portrayed life with HIV as something so bad that I have spent my life without it worrying about it. I know that, somewhere deep down, I can make the choice not to worry about HIV. Someone who is HIV-positive cannot.
All I can say is that to me HIV is no longer the reality of the virus and the disease, it has become instead a symbol of a lost life, a destiny denied. It has become something to fear in its own right, not because of the consequences – perceived or otherwise. If I was to prick my finger on an executioner’s axe before he lifted it to remove my head, my final thought as he brought the blade down would be if his previous victims had left behind contaminated blood.
* * *
The celebrated Danish children’s author Hans Christian Andersen probably had OCD. He was plagued by obsessive thoughts, way darker than anything that appeared in his fairy tales. A dreamy child – he spent much of his time with his eyes closed – Andersen the man converted his thoughts to classically compulsive behaviour. He had to rise several times each night to confirm he had extinguished the candle by his bed, ruined many an evening out with doubts about whether he had locked the front door and became anxious when he posted letters that he had mixed up the envelopes or written the wrong names.
Andersen did see his obsessions as the flip side of the creative imagination that made him wealthy and famous.
I possessed a peculiar talent, that of lingering on the gloomy side of life, or extracting the bitter from it, and tasting it; and understood well, when the whole was exhausted, how to torment myself.
He showed all the signs of inflated responsibility. Once given a banknote in his change in a Frankfurt restaurant, he later described in a letter to a friend how he discovered it was not legal tender. After he posted the letter, he became consumed with thoughts that his comment would lead to the waiter being fired. So he returned to the post office and retrieved it. He feared being burned in a house fire, so in his trunk he carried a rope he could use to escape from an upstairs window. He had the obsessive fear that he would be buried alive, and left a note by his bed on which he had written ‘Jeg er skindød’ or ‘I only appear to be dead.’
Andersen said once of his work:
There is something elevating, but at the same time something terrific in seeing one’s thoughts spread so far, and among so many people; it is indeed, almost a fearful thing to belong to so many.
This book is my thoughts spread so far. You cradle them as you turn these final pages. I belong to you now and to so many. I’m not fearful though, it feels wonderful.
* * *
There is a point towards the end of a live album recorded by the Los Angeles band Jane’s Addiction when their performance dissolves into audience noise, drums and breathless vocals. It’s a glorious mess and from it emerges their version of the song ‘Rock & Roll’ by the Velvet Underground. That was the music I listened to on that sunny 1991 summer’s day, just a few hours before my intrusive thoughts would turn into obsessive-compulsive disorder. The tape was still in the machine the next morning.
In my more melodramatic moments, I used to believe that listening to that subtle shift from song to song was the moment my happiness ended. I found it impossible to listen to that tape for years. Working for The Guardian more than a decade later I got to interview the band’s singer, the man who offered the soundtrack to my own transition. I wanted to kick him. I wanted to hug him. (I had my photo taken with him.)
My happiness did not end that day, but it was the last time that I felt happy – truly happy – for a long time. It was the last time that my thoughts were free to move and to transform. Even if what my mind produced was banal and uninspiring, it was spontaneous. It was my thought, my idea. It was not pre-ordered by OCD or programmed millions of years ago by evolution or performed by well-drilled electrical and chemical signals in my brain or broadcast as an inevitable sequel of my psychological history. It was new. It was mine.
Lots of people have asked me whether to write this book will help me. They mean, I think, whether it will help me address my OCD, to come to terms with the condition and to challenge my illness. I think it probably will. But, more important to me, this book is new and it is mine. To write it has reminded me how I felt on that summer’s day and shown me I can feel that way again. This book and the journey it involves have proven to me that OCD no longer holds my thoughts captive. They are free to dissolve to glorious mess. And from that, they can begin again.
NOTES AND REFERENCES
The page numbers for the notes that appear in the print version of this title are not in your e-book. Please use the search function on your e-reading device to search for the relevant passages documented or discussed.
A note on sources
Most case studies in this book are drawn from accounts published in scientific and medical reports, written by the doctors who treated them and the scientists who have researched their conditions. These people allowed their lives to be described in this way on the condition they were granted anonymity. As such, I have not tried to contact them or to identify them. I hope I have done their stories justice. Names have been changed and invented throughout, but where a given name was included in the original report, I have used it too.
Suggestions for further reading
A good place to start for more on the science of OCD is Obsessive-Compulsive Disorder by Dan Stein and Naomi Fineberg (Oxford University Press, 2007).
The most comprehensive and up-to-date academic review of the science of OCD and related disorders I have found is The Oxford Handbook of Obsessive Compulsive and Spectrum Disorders, edited by Gail Steketee (Oxford University Press, 2012).
For more on human stories of OCD it’s still hard to beat The Boy Who Couldn’t Stop Washing by Judith Rapoport (Penguin, 1991).
A recent memoir of life with OCD is The Woman Who Thought Too Much by Joanne Limburg (Atlantic Books, 2010).
A good general account of OCD is Tormenting Thoughts and Secret Rituals by Ian Osborn (Dell Publishing, 1999).
For an alternative view on OCD see Obsession: A History by Lennard Davis (University of Chicago Press, 2008).
For a scientific exploration of the nature and importance of intrusive thoughts see Intrusive Thoughts in Clinical Disorders, edited by David A. Clark (Guildford Press, 2005).
Rachel Herz has written a book that describes the emerging science of disgust: That’s Disgusting (W. W. Norton, 2012).
For more on Freud and Lanzer see Freud and the Rat Man by Patrick Mahony (Yale University Press, 1986).
For more on Esquirol and monomania and the politics of the era see Console and Classify by Jan Goldstein (University of Chicago Press, 1987).
I glossed over a century or so of important medical and scientific thinking on OCD in the 1800s. For a fuller account see German Berrios, ‘Obsessive-Compulsive Disorder: Its Conceptual History in France During the 19th Century’, Comprehensive Psychiatry, vol. 30 (1989), pp. 283−95.
For more on the Collyer brothers see Ghosty Men by Franz Lidz (Bloomsbury, 2003).
For a fuller account of the history of lobotomy see Great and Desperate Cures by Elliot Valenstein (Basic Books, 1986).
For
more on the development of drugs for OCD and other psychiatric conditions see David Healy’s The Psychopharmacologists series (CRC, 1998−2000).
I wrote a feature article for Nature on the problems with the DSM and the category approach to mental illness: ‘On the Spectrum’, Nature (25 April 2013).
For a biography of Nikola Tesla try Tesla: Man out of Time by Margaret Cheney (Touchstone, 2001).
References
ONE: Our siege mentality
‘Bira’, Y. Baheretibeb et al., ‘The Girl Who Ate Her House – Pica as an Obsessive-Compulsive Disorder: A Case Report’, Clinical Case Studies, 7 (2008), pp. 3−11.
‘Four thousand thoughts’, D. Clark and S. Rhyno, ‘Unwanted Intrusive Thoughts in Nonclinical Individuals’ in D. Clark (ed.), Intrusive Thoughts in Clinical Disorders (Guildford Press, 2005), p. 1.
‘six hours’, A. Ruscio et al., ‘The Epidemiology of Obsessive-Compulsive Disorder in the National Comorbidity Survey Replication’, Molecular Psychiatry, 15 (2010), pp. 53−63.
‘Marcus prodded himself blind’, A. Torres et al., ‘Loss of Vision Secondary to Obsessive-Compulsive Disorder: A Case Report’, General Hospital Psychiatry, 31 (2009), pp. 292−4.
‘between 2 per cent and 3 per cent’ and ‘fourth most common’, Karno et al., ‘The Epidemiology of Obsessive-Compulsive Disorder in Five US Communities’, Archives of General Psychiatry, 45 (1988), pp. 1094−9.
‘World Health Organization’, C. Murray and A. D. Lopez, ‘Global Burden of Disease: A Comprehensive Assessment of Mortality and Disability from Diseases, Injuries and Risk Factors in 1990 and Projected to 2020’, Global Burden of Disease and Injury Series, vol. I (Harvard School of Public Health, 1996).