Tourette's Sufferers Can't Help but Say What's on Their Minds—Even When It Hurts
Tourette's can be extremely frightening and embarrassing, both to the sufferer and observers unfamiliar with his disorder. Lubaroff's uncontrollable outbursts have included such phrases as "You have big tits," "I have an erection," "You're a wop" and, sometimes, "I love you." Many of his interjections—which can occur every couple of minutes, even in the middle of an innocuous conversation about the weather—contain crude sexual suggestions that would startle a sailor.
In the Middle Ages Tourette's victims were thought to be possessed by the devil. Nowadays they are thought to suffer from a neurochemical imbalance that, in the view of some doctors, may create a loss of normal inhibitions. "We may all have the same thoughts Saul has," says his doctor, Samuel Kuperman, head of the University of Iowa's Tourette's clinic, "but we don't say them." About 100,000 Americans have Tourette's, whose symptoms vary from mild tics and guttural sounds to obscene shouts. Several anti-Tourette's drugs exist, but they don't always work, or they work incompletely.
Remarkably, Lubaroff, through sheer willpower, is able to keep his outbursts, or "ticking," under control for the few minutes he is on the air between records. Says his father, David, a professor of urology at the University of Iowa medical school: "If you had to choose the worst thing for someone with this disorder, you'd have thought it was being on the air. I can't explain it. It is just marvelous. "Adds his mother, Martha: "It amazes me when I think about the heartache he has experienced that he still bounces back."
Lubaroff, 22, talked with correspondent Giovanna Breu.
Just picture the grossest thing in the world and I'll say it. All the things you must not say in a certain situation, I'll say, because I have Tourette's. People have a tough time understanding because it is a very rare and a very different disorder.
I have "tics" or "vocalizations." They are like a cough or hiccup that I can't control. The words that I least want to say come out. Often the tics change and I'll say "You're ugly" or "You're weird." Once I said "I'm gay" for a month. I sometimes think I need a mouthpiece to clamp my teeth onto to control my tics a little better. I often chew a piece of paper or the end of a pen to mask my tics. I call my Tourette's "Tony." I don't like Tony at all.
Sometimes it is hard for people to tell whether I am ticking or just talking, and they'll talk back to me. Claire is a full-time jock here at the station and she is kind of big-chested. Whenever I see her I say "You have nice tits" and Claire always says "I know." That stops me for about five minutes, but then I do it again. I don't want to offend anyone, but I can't help it.
One time we were doing a remote segment for the station from a seedy bar and there were some rednecks and a big black guy there and I kept going "rednecks, rednecks" and "nigger, nigger." The big black guy was cool, he didn't get mad, but he did make fun of me. I said, "Hey, man, knock it off, I can't help it." Then I took off. I can't handle being at a public place for very long. I don't go to movies. I don't go to restaurants. I don't go to bars. I just go where people are going to accept me—here at work, my folks' house or my friends' homes. I love my friends.
I didn't know what was going on when my Tourette's first started. When I was about 12, I began making noises, just clicks or guttural sounds. I don't remember any traumas that might have caused a psychological reaction, although my grandmother died about that time. There had never been anyone in my family with Tourette's.
I was very much loved by my parents, but when I first began making noises and no one understood what was going on, they would scold me and threaten to send me to my room. My mother thought I was angry and needed therapy. Nowadays I see a psychiatrist once every week just to help me cope and to discuss things.
I was diagnosed as having Tourette's when I was about 13 or 14. My father was very persistent about going through the medical literature; he called specialists all over the nation. He is the best dad in the whole world. My mom is a sweetie too. About that time I began trying different drug treatments. Since then I've been on about 10 different drugs and nothing has really worked. It is more or less my state of mind that has to do with it. I tic most when I am most nervous.
By high school I had progressed from sounds to obscene vocalizations. I don't like talking about high school. It was rough. Kids weren't accepting of my disorder and they mocked me. When I sat next to a black student the kids used to whisper "nigger" and I would shout it out. They would whisper obscene words to me and I would get in trouble with the teacher for saying them. When I came across the stage to get my diploma at graduation some kids imitated my sounds. My brother Matthew was upset. He says it was the first time he realized what kind of jokes people made about my disorder.
After high school I had about three years of college. I went my freshman year to Southwestern Community College in Creston, Iowa. My parents had picked the school very carefully. It had a special needs department and a good jazz program, which was important because I play the saxophone. I even got a music scholarship. Once I went with the school band to play at a Colorado jazz festival. My friends and my teacher made me stay in my hotel room because they didn't want me to go out to bars and get into trouble. I got an award as the outstanding soloist at the festival. But I left Southwestern because it was a real redneck town and they did not understand my Tourette's. I had no friends, no one to communicate with. It was a bad scene.
Afterward I went to the University of Iowa for two and a half years but dropped out because of lack of interest and because I wanted to get a start on my radio career. In high school and college I was always intrigued by disc jockeys. I thought they were really neat, you know, the way their voices sounded over the radio, the mystique. I always knew I could do it, even though over the years I'd lost a lot of other jobs because of Tourette's. I lost jobs in a department store and a pizza shop for that reason. I was an aide in a house that took in developmentally disabled adults and children. I took kids to the bathroom, bathed them, this and that. They fired me, even though the kids loved me.
My first radio job was on the campus radio station. I just asked the program director if I could be on and he showed me how to run a board, spin records, put on microphones. When I first got on the air live I knew what I wanted to do for the rest of my life. It was a real head rush, real complete, comfortable, kind of like a feeling of control. I knew I wouldn't slip on the air. You have to be professional. I don't tic on the air because I am professional. In a way it seems like a miracle. It's also ironic.
I now work shifts at two stations—KCJJ under my own name and KKRQ-FM as Dave Desmond. When I first met the program director here at KKRQ I called him a "c—t." He knew I had Tourette's, and I told him I'd never tic on the air. He said "That's cool" and that's the last thing we said about it.
A lot of girls call me up and tell me I am sexy. I was doing my shift at KKRQ last November when I got a call from this very sweet-sounding woman and she said I had a sexy voice and that kind of intrigued me and I told her to call back. She called the next week and I wanted to meet her. Her name is Angela Sharf. We hit it off and we have been seeing each other ever since. We want to get married. It is kind of wonderful to be in a relationship. The first time I talked to her I explained Tourette's. She calls my ticking "tethering" and that makes it better. She knew what was going on because she'd seen it on Quincy and now there is a person with Tourette's on St. Elsewhere.
I guess I am going to be forced to live with Tourette's for a time. I have to manage it. I have no choice. I've just got to cope. I used to feel that this shouldn't have happened to me, but I think I have worked it out, more or less. I think there's a purpose in life for everything. Maybe if I hadn't gotten Tourette's I wouldn't have gotten into radio.
Sometimes I wish I could have a whole day without tics and could live it up. I'd go to a movie and a restaurant and downtown. I wouldn't have to worry about bothering people. I would just enjoy myself.