Stephen DiJoseph, 57, a musician and now a filmmaker, was diagnosed with Tourette's at 16.
Stephen DiJoseph was six years old when it began.
He'd have uncontrollable urges to grab an object and squeeze it, to throw things, to bang his hands on a piano keyboard.
One night, the South Philly native took an ornament off the family's Christmas tree, a brightly painted ball.
"I'm six years old and I'm under this compulsion to squeeze this thing," DiJoseph said Monday in a phone chat, "to see how far I could get before breaking it." He did break it, suffering a minor cut.
His parents were alarmed.
DiJoseph had begun exhibiting symptoms of Tourette's syndrome, a neurological disorder that has helped define his life ever since.
DiJoseph, 57, a New Hope-based songwriter, singer, and musician, explores his illness in his film debut, A SynapTic Adventure: Tourettes and Beyond, an innovative, lively, 12-minute documentary. This fall, it won Best Emerging Documentary in the Bucks Fever Film Fest. (It can be screened for free online at www.synapticadventure.com.)
"My symptoms ran the whole gamut of blurting noises, tics, and coprolalia, which is the cursing," DiJoseph, 57, said. "But I also had components of ADD [attention deficit disorder] and obsessive-compulsive behavior."
By far the worst thing about his condition was that it went undiagnosed for a decade. "One of my goals with the film was to describe how from 6 to 16, I had no idea what I had," he said. "I was totally in the dark about it. I had never heard the word Tourette's."
DiJoseph, who said his parents were never less than supportive, was sent from doctor to doctor, getting only a gamut of incorrect diagnoses.
"They were all treating it as a behavioral problem, of me acting out," said DiJoseph. "I was even in psychoanalysis."
Tourette's syndrome, first diagnosed more than a century ago, isn't a psychological illness or a moral failing, said James Cook, director of the Movement Disorders Center at Abington Memorial Hospital. He has known DiJoseph for three years.
The muscular and verbal tics associated with the illness aren't caused by emotional turmoil or other psychiatric problems. According to the best contemporary research, the tics are brought on by an error in how the brain communicates with itself, said Cook.
"When you want to say something, the memory center and speech areas of the brain and, last, the motor areas are activated," he said. "The process is accomplished by lightning-speed communication between these different areas of the brain." Imagine that a faulty connection occurs, a misfire. That's what's happening with Tourette's.
There is no cure for the condition, said Cook, but the symptoms can be managed with medication and behavioral therapy.
A SynapTic Adventure isn't the typical docu. Instead of shooting experts talking about the syndrome, DiJoseph set out to capture his actual experience.
"It's a synaptic adventure, a taste of my experience of living with and creating art through Tourette's," DiJoseph says. It's filled with performance pieces, fragments of lectures he regularly gives about his illness, relayed with trippy visual and musical elements.
Music is central to the film - and to DiJoseph, for whom Tourette's has been inextricable from his compulsion to make music.
"For me, the Tourette's showed up simultaneously with my intense drive about music and becoming a musician," said DiJoseph. "I was already taking drum lessons at 6, then the keyboard. And I started writing songs early on."
He's been making a living as a musician pretty much since he graduated from Upper Darby High School in 1975.
"He's one of those creative people who will go on and on and on and create but never finish," said Doylestown's Beth Cahn Kennedy, who produced DiJoseph's film. A veteran production manager who had previously worked with Jerry Bruckheimer, Tony Scott, and Steven Spielberg, Kennedy said she helped DiJoseph sculpt more than 30 hours of footage to come up with the 12-minute docu.
"I really had to rein him in," she said. "His mind is always everywhere and he's filming or composing everywhere and all the time.
"That's what he does every free minute of every day: create, create, create, create from sunup to the minute he goes to bed."
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