Jessica Thom is a 32-year-old woman who lives in South London. But, unlike her neighbors, Thom has Tourette syndrome. Her condition causes her to say the word 'biscuit' 16,000 times a day, bang her head against a wall, beat her chest and make guttural sounds or swears. And, while the condition can make for some disapproving and disconcerting experiences with strangers, friends, and co-workers, Thom has a sense of humor about it. This month, she will publish her collection of memoirs about her experiences in the book, Welcome to Biscuit Land: A Day in the Life of Touretteshero, and has a website called Touretteshero in which she collects her thoughts and tics, in an effort to spread awareness about the often misunderstood condition.
In England, "biscuit" means "cookie", but Thom says that she is very rarely thinking about cookies when she says it. Her brother-in-law recorded her and found that she says it 16 times a minute. And, in a typical day, she hits her forehead with various objects, like a phone, carton of apple juice, a set of keys, a toilet roll and a strawberry.
The physical tics, she said, make her feel "a bit like suddenly being wrenched from the inside or as if someone's put itching powder in my blood".
Tourette syndrome is a neurological disorder that is characterized by multiple physical and verbal tics that last more than a year. Most people with Tourette syndrome and other tic disorders go on live very full and productive lives.
Thom has suffered from tics since the age of six. Though 1 in 100 children have Tourette syndrome, Thom is clearly an outlier - the condition affects more men than women, and normally sufferers do not call out obscenities. The majority of children have their symptoms diminish or fade away with time, through the use of antidepressants and habit-reversal therapy. Habit-reversal therapy asks sufferers of the condition to hold their breath, for example, instead of expressing their tic.
But Thom says that neither of those methods has worked for her. She does take muscle relaxers, but other medications have left her with horrible side effects. The condition fluctuates for her, she says, and though she lives with a roommate, there is still a lot of risk. In fact, her tics have intensified within the past two years, though she can sometimes lose the use of language altogether. Recently, she fell in the shower and now uses a wheelchair.
And, as challenging as life can be for her by herself, interacting with other people can bring a whole other set of difficulties. In an excerpt of her memoir published in the Daily Mail, Thom described being in the London tube as an elderly woman passed with her friends and said, disgusted, "Eugh, we have to put up with this, do we?"
Thom wrote, "I felt desperately alone and sad. I got on the next Tube and fought back tears. I've never cried on public transport before, but the woman's comment really hurt. She could carry on with her day and never be disturbed by my tics again. I don't have that choice."
But Thom has found a bit of an outlet in the form of her website, Touretteshero, and in her work at the Young Children's Project in development and fundraising. She has received a great deal of support through the website. Her book comes out this month.