Fourteen-year-old Matti Iverly, one of the narrators of my forthcoming novel On Fire (Thistledown Press, Spring, 2013), has Tourette Syndrome, commonly called Tourette’s or T.S. In the opening pages of the book she has this to say about herself: “At school they called me Tourette’s Girl, like I came out of a phone booth wearing a costume and making weird noises for people’s entertainment. But I was a serious person, looking for a serious purpose.”
The noises Matti makes are known as vocal tics. She describes them variously as “hiccups going backwards, a tea kettle boiling,” or “the sound of someone pushing a rock up a hill.” She wants us to know that like most people with T.S., she does not burst out swearing. (The impulse to utter socially inappropriate words is a type of Tourette’s known as copralalia. We hear more about it than it’s occurrence deserves.)
Matti has some of the traits that often accompany Tourette’s: obsessiveness, a need for order and quiet in her environment, some fine-motor control issues, and an inability to compromise. She also experiences what she calls “melt-downs” when she’s in stressful situations.
Governor General Gold Medalist Glen Huser (Stitches, 2003) describes Matti as “true, and funny and heart-breaking.” I hope that’s the case. I’ve based her on my own granddaughter, who is also fourteen and was diagnosed with Tourette’s while she was in the third grade. I believe both girls show tremendous courage and humour in the way they go about their lives.
Hopefully I’ve convinced to read more about Matti when On Fire comes out. If you’re interested in the highly individual nature of T.S. and the way young people deal with it, try the official Canadian website, www.tourette.ca. Once there follow the links to regional organizations and other websites.