When I wake up in the morning, I don’t tic. The alarm goes off earlier than I’d prefer; I grumble because I feel tired, yet manage to drag myself up and into the shower; I dress in a meticulously planned outfit, worry over whether it maybe shows the lumps around my stomach from my past pregnancy, just like any other woman might; apply my make-up, like a mask to show the world I’m one of them; head off to work, where I pretend to understand, to fit in; and some time in this process a thought pops into my head: ‘I haven’t ticced yet.’ Then, as though I have spoken some magic incantation, suddenly they hit me in full force, all at once – my head jerks, my eyes roll and blink so hard my vision sometimes goes black, my fingers furiously crack their own knuckles until they’re numb, my shoulder blade jumps and spasms, the need to pull the ligaments radiates over my whole arm and eventually freezes my hand until the tic is completed and I am free to move again – and then a moment later it happens all over again. Like yawning, once suggested, I have to do it and, the more I attempt to suppress the urge, the worse it will explode against my will. Try as I might to fit in, I am definitely not a ‘normal’ woman.[br][br]
When I was a toddler, I had fevers so high, they gave me seizures. The first time it happened, my mother thought I had choked on something and died. Fortunately, my parents learned these fever-induced fits are normal in young children; unfortunately, they also learned these fits were just the beginning. I soon developed a sinus infection that seemed, in my memory, to last months, although it may not have been so long. All I really recall is the lingering taste of the pink bubblegum-flavoured medicine I had to take until the infection finally went away, and the loud, aggressive snorting I would do to clear my nose. Eventually, the infection cleared, but the snorting remained, even to this day.[br][br]
‘Stop making that obnoxious sound!’ my parents would scold, and my weak six-year-old answer was simply, ‘I can’t.’ Needless to say, my reply didn’t carry much weight. Then came my need to walk in a set pattern of left foot, right foot, left, right, and, if I was suddenly stopped on my left foot, I would stamp my right foot hard into the ground to make my brain register that the sequence was completed. I looked like a deleted scene from Monty Python’s Ministry of Silly Walks. It wasn’t long before my parents took me to a paediatric neurologist who diagnosed me with Tourette’s Syndrome.[br][br]
Tourette’s was first noticed in the 19th century, when they dismissed it as hysteria and therefore curable by psychoanalysis. Even today many psychiatrists refuse to accept the longstanding medical evidence that Tourettic tics are, indeed, not a psychological problem but a very real biological disorder. It is a disorder of inhibition, where a tic might be the sensation that you repeatedly have to do or say something you know is inappropriate or even offensive; it is a disorder of mimicry, copying the sounds and gestures of others, or even of yourself; and it is a disorder of movement, an inability to control your own motor skills. It is this, combined with the high prevalence of certain strep infections among Tourettics, that has led many modern psychiatrists to believe the condition may be caused by a genetic predisposition triggered by illnesses like encephalitis or scarlet fever, an infection that travels up through the sinuses and eventually permanently damaging the brain. It is incurable, but treatable with medications; however, these medications carry side effects that many patients consider worse than the original disorder, and several of these drugs are now under threat of class action lawsuits in America.[br][br]
When I was first diagnosed, it was a mysterious label I wore secretly; I didn’t understand what it meant, and neither did my parents. We just knew that I was not responsible for the nose twitching that got me nicknamed ‘bunny’ when I was 9, or the eye blinking that gave me incurable migraines and made contact lenses drop out of my eyes when I was 12, forcing me permanently into glasses, or the shoulder spasms that pulled ligaments out of place and landed me in a sling when I was 12. When I was 14, though, everything changed.[br][br]
My school science teacher was explaining Parkinson’s Disease to us. A fellow student asked if that was what Jim Eisenreich, a famous American baseball player, suffered from. My teacher told us that no, in fact, he had Tourette’s Syndrome. I still get chills when I remember the way my ears pricked up at hearing these words. It was the first time I’d ever heard the condition mentioned without relation to me, apart from the rather disappointing scene in What About Bob? in which they make a joke of the condition due to its reputation for causing uncontrollable swearing (though, it should be noted, this particular tic only affects a minority of sufferers). After class, I said, ‘I have Tourette’s Syndrome – can you please tell me what it actually is?’ My teacher knew very little, but I felt like the doors of my life had finally been flung open, and there I was, standing at the edge of a brand new world. [br][br]
I immediately had my parents arrange for me to be seen by a neurologist. As a child, the doctors were hesitant to medicate me, but now, as a teenager, I could see all the ways my condition was affecting me and I wanted to do something to change it. They put me on a series of medications, which either made me so lethargic I would drop off in mid-conversation, then experience hallucinations and confuse dreams with reality, or they gave me vivid and gruesome nightmares. At last, I was prescribed what, in America, is called Zoloft. It is an anti-depressant commonly given to Tourettic and Obsessive-Compulsive patients and, by this point, it was well established that I also suffered from severe OCD.[br][br]
At first, the 25mg a day of Zoloft seemed to work. It was a miracle! Then, as quickly as it worked, it suddenly seemed to become ineffectual, and my symptoms had returned to their original strength. We increased the dosage to 50mg, and again I was washed in the miraculous removal of tics and obsessions – and again, after a short time, the symptoms all returned. This continued until I was up to 250mg a day, and I had developed such a dependency on the drug that I needed to take such a dosage in order for my symptoms to be as bad as they were before I ever began the treatment.[br][br]
I am half-English and, when I was 16, my parents and I moved from America to London. In a way, I was relieved, because I’d had some difficult social experiences in American high school, and the rise in gun crime and on-campus violence terrified me. My OCD afflicted me with constant worrying about being murdered, to the point where I was feverishly praying each night for my own safety and was convinced I would wake up one night and find a man standing over me with an axe, ready to chop me into pieces. I suffered terrific bouts of insomnia, and the lack of sleep stressed my body so much, my tics were worse than ever and both my mind and body felt ravaged by uncontrollable thoughts and impulses. [br][br]
On the other hand, the move from America, coupled with the anger and violence of my parents’ deteriorating marriage, was also the greatest stress I’d ever experienced. Sometimes, things were so bad, my tics made me incapable of speech. To escape the madness of my home and even my own mind, I first tried making friends with all the wrong people. I became involved with a man who was 11 years older than me, simply because he claimed to love me. Despite hating him at first, soon I convinced myself I was in love with him, and even began planning marriage and children. After three weeks, though, he disappointed me and I hated him once again, then never spoke to him again. I’d always had wild mood swings and tantrums, depressive fits no one could pull me out of, but now they became more extreme than ever. I would be in tears one minute, then flirting the next, then suddenly in a wild rage over nothing. I was so out of control, I was convinced there was another entity living in my head, sharing my body. I thought of her as the intruder, but then quickly rechristened her ‘The Puppet Master’ as I became increasingly worried that perhaps I was actually the intruder. I worried perhaps my American life never existed, but belonged to the real owner of my body. I looked in the mirror and couldn’t recognise my own face as belonging to me. I decided my friends, with whom I’d grown up for years, were not my own, and therefore I could no longer speak to them. I cut myself off from everyone I knew, until I was living in a perpetual state of isolation. I spent my time sleeping all day, then staying up all night writing poems to my Puppet Master. They sound like tortured love poems, but only I know what a glimpse into madness they really are.[br][br]
I was studying psychology as an A-Level at Croydon College at this time. I found it impossible to attend lessons, so I all but failed the final exams, which was just one more thing for me to dwell about obsessively, as I am an intelligent person and know I could have done far better. However, the grades proved not as important as the knowledge I gained. [br][br]
While researching a paper on schizophrenia, one night, I came across a list of symptoms and suddenly realised I was exhibiting 9 out of 15 classic symptoms, particularly the rather frightening ‘alien control symptoms’. I then read that anti-depressants can increase levels of the neurotransmitter dopamine and, where Tourette’s is linked with low dopamine levels, schizophrenia is linked with high levels. There have been studies conducted in which they have managed to induce tics and schizophrenic symptoms in non-Tourettic and non-schizophrenic patients. In a flash, I suddenly understood that my dependency on high doses of Zoloft was actually inducing certain schizophrenic symptoms. After two years of believing perhaps my life might be improved with these drugs, I weaned myself clean of them and decided, at 17 years old, that I needed a new approach to my disorder.[br][br]
Tourette’s is uncurable, but OCD can be managed through cognitive behavioural therapy sessions that teach ways to manage the obsessions each time they strike and not give in to the temptation of the compulsions, as these may relieve the anxiety for the time, but they only serve to reinforce the obsessions over the longer-term. I had myself referred to such therapy and, for the first time in my life, felt like maybe I could live with myself. Then I simply did what I have always done best: I read and read and read.[br][br]
At 25, I have learned that the most valuable treatment for any such condition is knowledge. Every day, I am learning more about myself and, the more I know and understand about my disorders, the easier it is to answer people’s questions – the easier it is to forgive myself and accept that some things are beyond my control. Even finally accepting that I cannot cure these problems, and therefore I can stop trying, getting my hopes up and then being painfully disappointed…well, there is an immense sense of freedom and even power in all these realisations.
I now know I also have ADHD and Borderline Personality Disorder. A friend recently noted this is a ‘wicked combination’, but I have come to recognise these are all simply labels for who I am and always have been; if you took one element away, I’d no longer be the same person, and frankly, despite years of almost suicidal depression and self-hate, I now really love who I am. I often secretly feel like I’m falling apart, struggling, yet I have somehow managed to gain steady employment, I am mother to a beautiful little boy and I’m marrying his amazingly supportive and understanding father later this year. I want to share this strength with others dealing with similar conditions. I have always been a storyteller, writing poetry, short stories and novels, and I see now that, even when I didn’t do it intentionally, I was always writing about my conditions. This is what has driven me this year to establish my own publishing imprint, Conditional Publications (www.conditionalpublications.com) as a creative home for sufferers of neurological conditions to get their stories out into the world in fresh and exciting ways, so that, little by little, we can end stereotypes, open people’s minds and show fellow sufferers that diagnosis doesn’t have to be the end of your life.[br][br]
I have learned how to mask my conditions enough to fool people into thinking I’m a perfectly normal woman. But I’m not. And really, I never want to be.