The Man Who Couldn’t Stop (29 page)

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).

‘
more severe than diabetes
',
L. Koran
et al
., ‘Quality of Life for Patients with Obsessive-Compulsive Disorder',
American Journal of Psychiatry
,
153 (6)
(1996), pp. 783−8.

‘
wait a decade
',
M. Demet
et al
., ‘Risk Factors for Delaying Treatment Seeking in Obsessive-Compulsive Disorder',
Comprehensive Psychiatry
,
51 (2010), pp. 480−85.

‘
men and women
',
C. Lochner and D. Stein, ‘Gender in Obsessive-Compulsive Disorder and Obsessive Compulsive Spectrum Disorders',
Archives of Women's Mental Health
, 4 (2001), pp. 19−26.

‘
It begins usually
', C. Carmin
et al
., ‘OCD and Spectrum Conditions in Older Adults', in G. Steketee,
Oxford Handbook of Obsessive Compulsive and Spectrum Disorders
(Oxford University Press, 2012), p. 455.

‘
unemployed
',
A. Torres
et al.
,
‘Obsessive-Compulsive Disorder: Prevalence, Comorbidity, Impact and Help-Seeking in the British National Psychiatric Morbidity Survey of 2000',
American Journal of Psychiatry
, 163 (11) (2006), pp. 1978−85.

‘
unmarried
',
L. Koran, ‘Quality of Life in Obsessive-Compulsive Disorder',
Psychiatric Clinics of North America
, 23 (2000), pp. 509−17.

‘
live with their parents
',
G. Steketee and N. Pruyn, ‘Families of Individuals with Obsessive-Compulsive Disorder', in R. Swinson
et al.
,
Obsessive-Compulsive Disorder: Theory, Research and Treatment
(Guildford Press, 1998), pp. 120−40.

‘
divorce
',
A. Torres
et al.
,
‘Obsessive-Compulsive Disorder: Prevalence, Comorbidity, Impact and Help-Seeking in the British National Psychiatric Morbidity Survey of 2000',
American Journal of Psychiatry
163 (11) (2006), pp. 1978−85.

‘
fail to recognize
',
K. Wahl
et al
., ‘Obsessive-Compulsive Disorder Is Still an Unrecognised Disorder: A Study on the Recognition of OCD in Psychiatric Outpatients',
European Psychiatry
,
25 (2010), pp. 374−7.

‘
two-thirds of sufferers never see
',
J. Calamari
et al
., ‘Phenomenology and Epidemiology of Obsessive-Compulsive Disorder', in G. Steketee,
The Oxford Handbook of Obsessive Compulsive and Spectrum Disorders
(Oxford University Press, 2012), p. 36.