A DAY IN THE LIFE OF TOURETTE SYNDROME

In his debut book, Evers, who suffers from Tourette’s syndrome, collects the gut-wrenching but ultimately uplifting stories of 17 others living with TS.

The narrators explore the challenges of living with a neurological disorder that causes a “soup” of movement tics, from eye-twitching, facial-grimacing, head-turning and shoulder-shrugging, and sometimes a mélange of sound tics—grunting, coughing, throat-clearing, barking, even yelling inappropriate words. Chelsea, a comedian and freelance television and video producer, describes a tic as “the most intense itch you’ve ever had, but the itch is in your brain.” Collectively, the real-life stories help dispel various myths and misconceptions about the disorder. For instance, popular belief has it that people with TS can control their tics if they really want to. Not true—they may be able to suppress their tics for a few hours or more, but ultimately, there are few if any preventive methods available. Meredith, 27, writes, “Once I get home, all bets are off. I begin ticking [sic] up a storm and let loose.” For many children and adolescents with TS, school is hell. Eighteen-year-old Johanna details vicious bullying that caused her to miss a hundred days of school in seventh grade. Some of those profiled were diagnosed with TS as children; others had no official diagnosis until they were much older. For many, the diagnosis was a relief: “Just happy it has a name,” nursing assistant Matthew explains. There’s no cure for TS, and most medications have little or no impact on stopping the tics. Many people with TS also contend with a host of other medical and psychological conditions, including OCD, ADHD, anxiety disorder and depression. In Evers’ attempt to cover a wide array of people and places, he may have overreached; some of the stories become repetitive, diminishing the collection’s overall educational and inspirational impact. Notably, people with TS bristle at the idea that they can’t lead active, productive lives. “TS is not what I represent,” writes 30-year-old Twiz. “I am also an artist, a learner, a worker, etc. It does not define me.”

An important if not always trenchant look at living with TS.