It was not until I was 24, six years ago, that I was diagnosed, by a psychiatrist in New York, with Tourette syndrome (TS) and obsessive-compulsive disorder (OCD), TS's frequent - often more debilitating - partner in crime. Because of the way I look, and what most people know (or don't know, rather) about these conditions, you would never assign these labels to me unless you were told of them in advance. Even then I would probably be able to hide anything out of the ordinary and prevent you from believing the truth. After all, I've been doing just that - passing for normal - for most of my life.
Before I was 10, my first tic appeared - a quick, firm head jerk that usually occurred in sets of two. For weeks, maybe longer, I was able to keep it a secret. Soon, however, the girls in my ballet class noticed it, then my sister, and finally - in spite of my best efforts to hide it from them - my parents, who promptly set up an appointment with my affable if geriatric paediatrician. As I sat in his familiar office, eyeing the full basket of candy on his desk and smiling prettily as my ears were checked for possible infection, inside I was as tightly wound as a turn-of-the-century timepiece, literally willing my body not to move. When the doctor handed me a cherry lollipop and reassured my mother that I was absolutely fine - "perfectly normal" - I smiled triumphantly and excused myself to use the ladies' room, where I jerked my head so severely, as a release from the pressure of keeping so still, that I heard a crack like a gunshot.
After that first tic, I endured hundreds more, while increasing my ability to conceal them from the people around me, especially my father, whose shock at this development in his otherwise perfect child was nearly as great as my own. The truth is that even now, no one - not any member of my family, any friend, any colleague, my husband - has ever seen the full extent of my physical tics. I'm not sure I could catalogue them in their entirety myself. Over the past two decades I have jerked my head sideways to varying degrees, thrust my chin forward or drawn it into my neck, shifted my lower jaw from side to side or back and forth, rolled my eyes to the outer corners of their sockets, clicked my back teeth in patterns, clenched my hands in pulsating fists, flipped my hair out of my face until it was knotty, sniffed furtive little rabbit sniffs, cleared my throat in quiet little coughs, flexed my wrists up and out, and rotated my shoulder blades, as though I were trying to make them meet in the middle of my back.
Although these outward manifestations of what is, in my opinion, largely an inward condition, caused me physical pain and embarrassment, what went on in my head was much harder to control, suppress or explain. Even before I developed tics, I counted to myself, off and on, throughout each day, always to six and back. Sixes were good, threes were bad; in fact, even numbers in general were - and remain - vastly preferable to odd ones. It is hard to explain the pervasive nature of this rule, which affected not just objects or words, but how I walked, talked, coughed, even thought. When I was under duress or overtired I would count ideas - after six in an hour I had to clear my head by repeating my name (A-my S Wil-en-sky - six syllables) until the hour was up, allowing me six more ideas.
At around the age of 12, I became obsessed with death, with illness, and monitored my temperature and blood pressure in a notebook for years, although I was physically as healthy as a horse. I meticulously researched diseases, such as encephalitis and lymphoma, and often convinced myself I had the symptoms, such as a swollen brain or painful lymph nodes. I invented elaborate rituals, such as complicated counting patterns, to keep myself safe from my limitless fears. And also as a protective measure against unspecified disaster, I started to hoard. For years, I saved: movie ticket stubs, gum wrappers, fortunes from fortune cookies, pennies, paper clips, safety pins, toothpicks and receipts, even from purchases of less than a dollar.
In short, I was a mess. In my teenage years it took me 10 minutes to get from our front door to my bedroom due to all my walking and touching rituals. I managed to fight my way through adolescence, hoping that I would wake up one morning free from the burden I called my "habits". It was not until I was in graduate school that I was able to confront the possibility that something diagnosable - maybe even treatable - was wrong with me. When I mustered up the courage to consult a psychiatrist, he shook my hand. "Congratulations," he said, "I'm amazed you waited this long."
Tourette syndrome is not, as it is nearly always portrayed in the media, a "swearing disease". About 10% of sufferers have coprolalia, the clinical term for vocal tics; that means 90% are afflicted primarily with physical tics, like mine, to varying degrees of severity. Physical tics, a fact to which I am living testimony, can be easy to mask or diffuse. In fact, I have met dozens of men and women who were middle-aged or older before being diagnosed with TS. Many sufferers, like me, were diagnosed in their 20s, after the worst of the condition had manifested itself.
In medical terms, TS is a chronic neurobiological disorder of the central nervous system caused by abnormalities in neuro transmitters - dopamine and serotonin - that control the body's movements by sending messages across gaps between nerve cells called synapses. Obsessive-compulsive disorder, also a neurobiological and not a psychological condition, causes its sufferers to perform a wide range of compulsions in order to negate the anxiety caused by various obsessions, such as mine with death. OCD is much more prevalent than TS as a distinct disorder but is found in the majority of those with TS as an integrated component.
Once I was diagnosed, I began regular sessions with an expert and started on medication: haloperidol (Haldol), a tic-suppressor that blocks the dopamine receptors in the brain, for the Tourette's, and fluoxetine (Prozac), a serotonin reuptake inhibitor, for the OCD. I began behavioural therapy, where I chipped away, bit by tiny bit, at the obsessions and rituals that I now accepted had stolen hours every day.
The behavioural therapy was like learning to read, or ride a bike: for months the whole enterprise seemed insurmountable and then suddenly, after a gum wrapper screwed up in the trash can here, a cup of iced coffee with five ice cubes there, a brick fell out of the dam, the dam crumbled and was swept away by the current, and shortly after I couldn't imagine why on earth I'd started saving gum wrappers in the first place. The drugs were less successful, although they had the desired effects - after a year on each I chose my familiar enemy over the strange and uncomfortable side effects. I still prefer an occasional ticcing bout to pervasive lethargy, although I will certainly consider the new generation of medications being developed when they come out, if I feel the need.
Today, although some of the more deeply-ingrained tics and rituals do creep back in times of stress, I am largely free from the burdens they imposed for so long on my body and mind. As an adult, with a career, a husband, a social life, I savour the regained hours in each day, hours I used to spend, say, putting all the correspondence I had ever received - including notes - in chronological order. Overall, I feel amused by many of my former rules, much less beholden to the few that remain. Most of the time, I throw things away like anybody else: old magazines, empty boxes and bags, insignificant receipts. With age, as is usually the case with TS, my physical tics have lessened in intensity and reduced in frequency to an entirely manageable extent. Almost always now, waiting for the bus, sitting at a cafe, walking down the street, I not only look normal, I feel so.
Although I never set out to become a spokesperson for TS and OCD, my memoir has made me one. At first, this made me extremely uncomfortable. I felt neither compelled nor equipped to speak for others, whose experiences in general and with these conditions may have been totally different from my own. But the responses I receive to my story are so unpredictable - and so often delightful - that I would not trade my journey for the world. Perhaps my favourite so far was that of my husband's 83-year-old grandmother, an upright, churchgoing lifelong midwesterner, who upon reading my book said to me, while giving me an enormous hug, "Passing for normal, eh? That's what we're all doing, I suppose. Every last one of us."
Passing for Normal by Amy Wilensky, published by Scribner at £9.99, will be available from August 14.
