A moving but also hair-raising story of Tourette’s syndrome and a risky surgical procedure.
When assigned to cover the Oprah Winfrey Show, Kansas City Star feature writer Fussell used his affliction as a calling card for an interview, telling her how, some years before, her interview with a fellow sufferer had inspired him. Winfrey gave him a tape of a recent show she had done with Matovic, who had been disabled by the syndrome until recent, successful brain surgery. The doctors implanted an electrode deeply in his thalamus (the area which controls motor impulses) and connected it to a battery-controlled minicomputer placed in his chest. While the potentially fatal surgery had worked for people with Parkinson's disease, Matovic's operation was the first success story for a Tourette's patient. After watching the tape, Fussell got in touch with Matovic to share experiences, and the idea for a joint book project emerged. Now happily married with children and a successful career, Fussell's life nonetheless was becoming unendurable. He suffered severe pain from the violent, uncontrollable jerking motions of his head, which had injured vertebrae in his neck and also disrupted his sleep. He writes about both of their battles with the disease, which worsens over time. As a boy and young man, Fussell was able to divert attention from his embarrassing tics. Matovic, 33 at the time of his operation, had a more disabling disease, which had also come on slowly but had progressively incapacitated him. Unable to work, he devoted his time to finding a team of neurosurgeons who would perform the difficult operation.
A graphic but inspiring depiction of the ravages of the disease, their bravery and the sustaining love of their families.