Shelly Berg: New Moon Over Miami
SB: Sure. It fascinates both of us.
AAJ: Endlessly! I wanted to ask you about how having Tourette Syndrome relates to all this accomplishment.
SB: It's a very enigmatic condition. The best they know is that it comes from the same kind of dopamine area as Parkinson's, but it's not debilitating.
[Note: for clear, reliable information about Tourette, see the Tourette Syndrome Association website.]
AAJ: It's not a wasting disease?
SB: No. It waxes and wanes throughout life, but it doesn't get worse as you get older. And there are different manifestations of it. Yelling obscenities is called coprolalia, and if you donït have coprolalia, you never will. I don't have itwhen I'm swearing, I mean it! But I knew someone who got into trouble because of it. He was playing for Nell Carter's show. One night she came out in a bright yellow dress, and he yelled, "Who ordered the taxi?"
AAJ: And that was the end of that gig.
SB: Unfortunately, yes. With coprolalia you say the thing that you would dread saying, that you don't meanyour heart's in another place. It's very bizarre. The best way I can describe Tourette is that it's a continuing tension seeking release, and the release is the tic, or the grunt, or the utterance.
AAJ: So the nervous system is on high all the time.
SB: Yeah, and yet I can feel completely relaxed and still have Tourette. It's a tension that's different from the tension of how calm you are.
<AAJ: It's detached from what's actually happening in your life?
SB: Yes. It's a neurological tension, not a psychological tension.
AAJ: Does it get exacerbated if you're under stress?
SB: Very much so.
AAJ: Like any weakness that any of us has, I suppose.
SB: Yeah. And it's hard to describe what it feels like to live every waking moment with an urge to twitch. It's very, very annoying.
AAJ: It sounds like having to pee all the time.
SB: Yes, but only doing it in spurts.
AAJ: Never getting relief.
SB: No, there's no relief, because you're spurting all the time. The twitch can move aroundsometimes it'll be in my mouth, and then after awhile it moves to my back. I tried medication once, hated it.
AAJ: What kind of medication?
SB: A blood pressure medication, a patch. The thing about medication is that what I do requires a kind of hyper-sense, this place in your brain and soul that's not easy to access. When you get there, it's really special because it fills everybody up, and they're there with you, and something magical is happening. I worried that, even imperceptibly, taking medication would dull that. And that's a chance I could never take.
AAJ: I've seen some speculation about a connection between Tourette and giftedness.
SB: A lot of people with Tourette are very creative, so there may very well be some relationship. It's kind of like "Love Hangover" by Diana Ross"If there's a cure for this, I don't want it!" I know I can get to that place where it's almost telepathic with the audience, and if Tourette is part of that, I don't want to mess with it.
AAJ: When were you diagnosed?
SB: Well, the onset of it was probably at eleven years old or so. It was interesting, because I also have an autoimmune disorder [severe chronic neutropenia] in which my body kills my own white blood cellsI have to give myself a shot of neupogen every few days to grow my blood cells, or I'll die. There may also be some relationship between the immune thing and Tourette.
Anyway, when I was about eleven or twelve, my parents took me to some specialist who hooked up some EEGs, with electrodes all over me. But in the end, they came to no conclusion.
AAJ: They probably had no conclusion to come to, forty years ago.
SB: They tried to put me on muscle relaxers, tranquilizers, things like that. They were trying to knock down the tic, but something in me said no, I'm not going to take this stuff. The great irony is that I was finally diagnosed at thirty-six years old, long after I went through a lot of anger at myself.
Because the thing about Tourette is that, if I were to sit here and focus all of my energy on not ticcing, I could do it. I could sit here, just breathe, and not do it. I couldn't do it forever, but because you can do it at all it's easy to believe that it's your own faultyou're just nervous.
AAJ: And you could control it if you really wanted to.
SB: Yeah. Don't tell my colleagues at USC, but I went to UCLA's Neurology Clinic because that's where Oliver Sacks had beenit was just the place [well-known for their Movement Disorders Clinic]. The doctor meets me in the waiting room, shakes my hand, and says, "Nice to meet you." We walk down a short hallway to the examining roomabout 15-20 feet. I sit down, and he says, "So, wanna know what you've got? You have Tourette syndrome. Let me tell you how I know." And he listed all the stuff. He was describing me! It was the most liberating moment of my life: "You mean it's not my fault?"