I'm introduced to Lowell Handler. He gets close -- invades my body space -- and touches my shoulder. Not in a friendly way. Or authoritatively. His touch is just weird. The man himself seems normal -- to a point. His speech is OK. He's in his early 40s. He isn't short, but there is something slightly gnome-like about him. Especially when he makes his little honking noises. Lowell Handler touches my shoulder several more times as we walk into a
conference room up in the Salon offices off Times Square in Manhattan.
I set up my tape recorder on the table and Lowell Handler touches this Sony instead of my shoulder. I've been reacting to his actions like the worldly cosmopolitan that I am. I've ignored him. I know that Lowell Handler -- freelance photographer, college teacher, author -- suffers from Tourette's syndrome. This is why he must do what he does.
"How many people suffer from TS?" I ask. He answers by saying, "How many people have it and how many suffer?"
"Two hundred thousand people have it," Sue Levi-Pearl answers as she enters the room and takes a seat. She is the president of the Tourette's Syndrome Association, a family organization that's been around for 27 years. Levi-Pearl is pleasant looking. Like a librarian. Or a dentist. "TSA was started by the handful of folks who believed they were the only ones in the world who had a child with this disorder," she explains.
I reach out and check to make sure my tape recorder is running while Levi-Pearl explains that her brother-in-law has Tourette's. "I married into the family with certain professional abilities. My father-in-law determined that I should become involved in encouraging more science."
Just what is Tourette's syndrome exactly? Levi-Pearl waves her hand at Handler. He should answer. "It's a neurological disorder which in its essence is a lack of ability to inhibit," he says. "A lack of ability to inhibit movement, noises, thoughts, gesture and behavior."
Handler's first book, "Twitch and Shout" (published last year), is his memoir of the disease. "Before I was 24, I had no idea what Tourette's was," he says. "I'm 43 now. I felt a relief when I learned that there were thousands of people who have it. But I felt a tremendous burden -- I had fooled myself into thinking that it would go away. And here is this doctor telling me that it's never going to go away."
So just what is a "Tourette" exactly? "Dr. Georges Gilles de la Tourette," Handler answers. As he talks, I check on my tape recorder. "He was a French neurologist. He practiced in the 'Golden Age of Neurology.'"
You should know that I am checking my tape recorder because of an optical illusion. This little Sony looks like its tape is still instead of running. Handler reaches across the table and touches my Sony as well. He doesn't care whether the thing is working or not. He just has to touch it. "Tourette was a contemporary of Freud," he continues. "He was the first one to see that this disorder was not psychotic. There is a spectrum of Tourette's and compulsive/obsessive disorder in the frontal lobe of the brain."
The first official sufferer of the malady was Marquise de Dampierre, a 19th century French noblewoman whose symptoms included tics and coprolalia -- the involuntary shouting of curses and obscene language.
"A friend once said to me, 'There's a little Tourette's in all of us.'"
Handler laughs, touching the tape recorder again. "'We all want to say "Fuck you" to our boss. Only you guys have the ability to do that.'"
Levi-Pearl is quick to point out that only 15 percent of Tourette's sufferers have symptoms of coprolalia. Wow. "Only?" That's 30,000 people. Thirty thousand people shouting, "shit, motherfucker, goddamn, goddamn" in church. In court. In bowling alleys.
"If I had Tourette's syndrome I'd know it, right?" I ask Levi-Pearl.
"Would you know it if you had it?" she repeats. "You may go through life having a little involuntary movement and clearing your throat irregularly. 'Oh that's just David's habits.' Then you would see one of our public service announcements and say, 'That's me.'"
We talk about children. "Kids that get diagnosed fairly early are lucky," Levi-Pearl says. "Parents realize what the child has instead of thinking they have brain tumors. Most children with classic Tourette's syndrome do quite well in mainstream education. There are those who have TS as well as learning and attention problems." She pauses. "In a third of cases there are varying degrees of obsessive traits." She looks across the table and smiles
at Handler. "And by my even saying it, Lowell wants to do some stuff."
"I don't even have to look at him," Levi-Pearl says. "He's already thinking about his stuff. Everyone has their own obsessive stuff."
Handler touches my tape recorder.
"What exactly is your stuff?" I ask him.
"I do a lot of touching of inanimate objects and people," he answers
matter of factly. "There are other people who have obsessive-compulsive stuff who are just the opposite -- they can't stand to be touched. There are people who have to have specific symmetry in every object. There are people who have to get dressed in a specific order or else they have to get undressed."
I point out that I basically ignored his stuff. "How should I react to you?" I ask, and then imitate him reaching out to touch the tape recorder.
"People have all kind of reactions," he answers. "I was on the subway a few months ago. This guy was in the subway car and I was on the platform. I'm Touretting and shaking and doing all kinds of things. This guy looks up at me and shouts, 'You must be some kind of fucking retard.' And I said, 'You're right. I'm retarded. And you must be a very smart man.' And the doors closed and he was screaming at me as the subway went away." He pauses and
halfheartedly touches my tape recorder.
"It's easy to get interested in the strong reaction," a newcomer says. It's Jonathan Lethem, the final participant in this discussion. This prolific, brilliant novelist's latest novel, "Motherless Brooklyn," stars a private detective who has Tourette's.
"I'm fascinated by the things that point exactly in the direction 'Should I ignore it?'" he says. "What Tourette's exposes -- someone behaving strangely -- is the way that we all weave together a social world where we allow a certain amount of strangeness. We filter it out. Have a built-in denial that says, I'm not seeing that. That didn't really happen. There was a reason for it and I don't
know the reason. I don't need to think about it. Or, I'm not going to react to that. Tourette's can become an example of something that exposes aspects of human interaction that are at work everywhere."
I check my tape recorder as Lethem adds, "I found that writing is extremely Tourette. It's got rituals. My revision takes an obsessive grooming of the text. My generation of metaphors is to turn ideas upside down. Wordplay. A game like written tics."
Levi-Pearl raves about Lethem's book. "I read it in one sitting and
thought, Either this guy has Tourette's or all his friends have it. He had so captured the essence, the feel of Tourette's. There is an intuition there." She pauses. "When I learned that Jonathan had never seen anyone with TS I was truly blown away."
Handler touches the tape recorder and gives a honking laugh. "You'd never seen anyone with it?"
"Seen is the wrong word," Lethem answers. "Because I had of course seen them. But then I read about Tourette's in Oliver Sacks. It was moving and intriguing to me. I also read 'Twitch and Shout.' I was going to have to explore Tourette's in my work because of the enormous level of identification that I felt. Tourette's became my own response to the world even if no physician would ever consider me a candidate for diagnosis. I had voluntary Tourette's."
"You should have called me up," Handler honks, touching the tape recorder again. "We could have gone Touretting through the East Village."
"I was tempted and at the same time I was protective," Lethem says. "Once I had my notion of my narrator Lionel in place I put up some walls, because I only wanted to know what I knew because I was on fire with my character and I needed to just go."
"The aspect of Tourette's syndrome illustrating larger aspects of human nature is what I'm hoping people pick up on from my book," Handler says to Lethem (just two authors talking). "It's something that illuminates universal aspects of human nature."
"Do you know when you're going to start doing your stuff?" I ask Handler.
"Sometimes I can get a premonition," he answers. "Sometimes it just jumps out without warning. Stress affects it negatively."
"That's universal," says Levi-Pearl. "Anxiety and stress."
"And exhaustion," Lethem adds.
I ask if there are medications. "Yes," says Handler. He takes something called Orap, or pimozide. And Prozac. "I helped get Orap approved by the FDA," he says. "I testified in 1983. I started taking Prozac right after it came out." He then adds, "I was prescribed the Haldol. It just blew me away. It was horrible. I took that hoping the side effects would go away for almost a year."
I ask Handler something personal. "Do you drink?" I say. Then add the word "recreationally."
"Yes," he answers. "I drink recreationally. It lessens the symptoms of Tourette's. But not for everybody. It might make the symptoms worse. For me it's a tranquilizer."
"You said sometimes you can forecast Tourette's when it's about to happen," I say. "But when it's happening are you always aware?"
"I'm aware all the time," Handler answers. "It's like someone holding a mirror up to your face. If I'm alone in my apartment I don't notice it much. But I notice it in the reactions of others."
"I'm completely comfortable with you," Lethem says. "But I still watch your hand go out to the tape recorder. I watch it and you see me watching you. That's me holding the mirror up right there without any ill will or misunderstanding or lack of information."
Handler honks good-naturedly, but doesn't reach for the tape recorder again.
"Do you have to touch it?" I ask him.
"I have these compulsions to do things," he explains. "An obsession is the thought. A compulsion is the action. I had the thought I have to touch not just the tape recorder, but one specific spot on the tape recorder. And if I don't I will feel terrible. So until that action is complete I will feel amiss until there is another action I must do."
"It's a little like me checking to make sure it's running."
Lethem, Levi-Pearl and Handler all look at me and give dramatic nods. "You're discovering your place in the spectrum," Lethem says.
"I bet you do other stuff," Levi-Pearl says to me, a little wickedly.
"Yeah," Handler adds.
I confess to the three that there are times when I exhibit compulsive behavior in private. I don't tell them that this behavior exclusively involves rituals I must perform before I can leave my apartment: I must check to make sure that A) the stove is off, and B) the iron is too. I do this checking even when I know that I did not drink any coffee or iron any clothes.
"When someone has compulsive-obsessive disorder with no tics," Levi-Pearl says, "their need to complete an activity is so pressing because something terrible will happen: My mother will die. I'll get run over by a truck."
My apartment will burn down and kill my dog, I say mentally.
"That is a classic disorder," she continues. "For folks with TS, those
forethoughts of doom do not seem to manifest. But rather, they have to do this. They just gotta do it." Then she looks at me. "Is that clear? Because we know what you got now ..."
Handler begins arguing good-naturedly with Levi-Pearl about the association's position on Tourette's jokes.
"I really disagree with a stand that feels compelled to criticize every joke about Tourette's," he says. "I have heard some hysterical things. I heard a thing on the radio about a guy with Tourette's calling a whorehouse. The madam didn't know the caller had Tourette's. But it should have been apparent as the caller got crazier and crazier. Asking about different fetishes. And
finally he goes, woo woo woo" -- Handler really puts his heart into his woo woo woo's -- "and the madam says, 'That's between you and the girl, thank you, good-bye.'"
He pauses, then says, "I understand part of TSA is to be a watchdog organization, but we're in a society here where really anything
goes. Anything is ready to be made fun of. But at the same time anything is OK to be taken seriously too. People know the rules."
Then he touches the tape recorder. He does it almost casually, like a man flicking a cigarette in an ashtray. "Of course it's funny. It is funny having Tourette's. It's also sad. It's a million different things at the same time."
Handler takes his hands away. And I reach out. But stop. I want to see with my own eyes that my little Sony is running, that everything is working the way it's supposed to. Then I say, "To hell with it." And drop my hands in my lap like Handler, the one with Tourette's syndrome.