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RANTING IN THE MIRROR:An Interview With My Tourette Syndrome

by Vernon Frazer


If Tourette syndrome has proved an elusive subject for medical practitioners -- psychiatrists, neurologists and other specialists -- it has proved an equally elusive subject for the people who live with the medical condition, including this interviewer. During my attempts to get in touch with my Tourette syndrome, I left numerous messages on Tourette's answering machine, none of which he returned, and knocked on his door, which he never answered. It wasn't until l made vigorous threats into my bathroom mirror that Tourette finally made himself available, and then only for brief periods during which we discussed the issues affecting this interviewer.

At first glance, Tourette seems intimidating. More than a mere reflection, he revealed himself as a man of many faces, moods and styles, none of them predictable, though over time one could anticipate the changes in much the way one might look in the mirror on a Tuesday before work and find one's reflection acting the way one did the previous Saturday one beer before Last Call.

For our first interview, Tourette wore a gray suit and a blue tie and projected the image of a psychiatrist with an entrepreneurial bent. As he sat behind the desk of his expansive office, he conveyed the easy demeanor of one in charge: of himself, his subordinates and this interviewer.

Vernon: You don't know how hard I've been trying to reach you.
Tourette: I've been here all along.

Vernon: Then, why didn't you return my messages?
Tourette: Sometimes I'm oppositional.

Vernon: Oppositional?
Tourette: If you want me, I don't want you. Or vice-versa.

Vernon: That's nice to know, but it doesn't help me.
Tourette: It does help you. You just don't know it yet.

Vernon: How does it help me?
Tourette: Any knowledge is helpful. But you have to know how to use it.

Vernon: Use what? Being oppositional?
Tourette: Now you're being oppositional. It's not an appropriate way to conduct yourself when you're the person requesting the meeting..

Vernon: I'm sorry. I guess it's my frustration..
Tourette: Or maybe your Tourette syndrome?

Vernon: Then, you think I have Tourette syndrome too?
Tourette: What makes you think you have Tourette syndrome?

Vernon: You sound just like my shrink.
Tourette: I hope I get paid as well as he does.

Vernon: For not knowing anything! Give me a break. I'm not some pill-swallowing hypochondriac.
Tourette: You sound as though you need a Time Out.

Vernon: I'm stressed out. I'm FREAKED out. My wife's best friend from high school came to stay with us for a week. She told me she thought I have it.
Tourette: What does she know?

Vernon: For one thing, she's a nurse. For another, her ex-lover and daughter have Tourette syndrome.
Tourette: Relax. You can't get it from sharing toilet seats.

Vernon: Don't tell me to relax! I've heard that all my life and I'm sick of it. "Relax, relax!" And all the while I'm as calm as my body allows me to be.
Tourette: This does sound familiar. Keep talking.

Vernon: Well, I have this cough (coughs) and this throat clearing hack (hacks). I've got these twitches, too. (twitches) I've been to psychiatrists, social workers and psychologists ever since I was ten years old. And none of their therapy has been very effective.
Tourette: Did it ever occur to you that maybe you're just plain nuts?

Vernon: Look. I've got a third cousin who had Tourette. My mother was diagnosed as having Saint Vitus' Dance when she was a girl. So neurological disorders seem to run in my family. Does that help make my case?
Tourette: Some. A number of doctors used to misdiagnose Tourette as St. Vitus Dance.

Vernon: Good. Maybe now we're getting somewhere.
Tourette: Be careful where you want to go. You might get there.

For the second interview, Tourette appeared in the bathroom mirror wearing a 1970's leisure suit, hair permed over his ears and a shirt open half-way down his chest. A gold chain nested in his black bramble of chest hair. At the base of the chain hung a key.

Vernon: So, there I was, just diagnosed, and sitting in my car. It all started making sense, the way people had always treated me differently, never taken me seriously, never even acted as if I had the right to be taken seriously. And this mood just like, uh, crystallized in me and just before I turned on the ignition, I said in this low, really determined voice, "The abuse stops!"
Tourette: You're mad as hell and you're not going to take it anymore. Right?

Vernon: Right. After they diagnosed me, I stayed around for a few tests. Granted, on the one hand it's like being told you have a case of leprosy that isn't degenerative or contagious, but on the other it's like being told you have -- I lost my thought. What was I talking about?
Tourette: Obviously, nothing you know about.

Vernon: It's all there, like it was written on a blackboard. But what happened just now...It's called thought-blocking. I didn't realize what it was until the doctors asked if it happened to me. You have thought-blocking too.
Tourette: So, what's wrong with that?

Vernon: Nothing. It explains why sometimes an answer to a problem will flash in front of me almost instantly, but I won't be able to find the words to tell people about it.
Tourette: I can't hide it. It happens to me, too.

Vernon: Now I remember what I was saying. One of the doctors was explaining that one of the tests he was doing seemed to indicate that people with Tourette were better at multi-tasking than people without Tourette, and that they could handle complex tasks forty percent faster. He said he thought it had to do with brain development. I mean, you know, like, in normal people one cerebral hemisphere dominates over the other, but people with Tourette have more balance between their cerebral hemispheres.
Tourette: I'll bet that's the first time in your life someone said you weren't mentally unbalanced.

Vernon: I don't need to take abuse from you, either.
Tourette: Sorry, dude. I'm just being oppositional. Part of my nature

Vernon: Part of my nature too is that I'm creative. The doctor said people with Tourette tend to be creative, too.
Tourette: Next thing you'll be telling me is that it makes us better lovers.

Vernon: If it does, I'll take it. Do you have any evidence?
Tourette: Hey, dude. I wouldn't be wearing this shirt and chain if it wasn't true.

Vernon: That's anecdotal evidence.
Tourette: Hey, dude. You want anecdotal evidence? Any time you're having one of your sleep disorders, just let me know. Have I got some stories to tell you! Take last night, for example. I met this blonde and this brunette. Killer! I mean, both of them. When the three of us left the club, we --

Vernon: Multi-tasked?
Tourette: You got it.

Vernon: You mean multi-bragged. I'm talking about things like well, like the doctor suggesting to me that maybe the equal development of my cerebral hemispheres is why I can play bass and recite poetry at the same time.
Tourette: You've always had enough trouble chewing gum and walking at the same time.

Vernon: And you're coming across just like a lot of the normal people I've known.
Tourette: I've already told you, I'm oppositional.

Vernon: I think you're just trying to assimilate with the normies. And I don't believe your story, either.
Tourette: You're right. When I left the bar last night, you know what really happened? The blonde and the brunette got in their car and went home and I went home in mine. Alone.

Vernon: That's more the way it used to go with me.
Tourette: Up until the last minute I expected to get somewhere with one of them. Then, they up and left without even saying good-bye. It was humiliating, actually.

Vernon: You're digressing. You know what's humiliating to me?
Tourette: What?

Vernon: That I've had Tourette symptoms for forty-two years, ever since second grade, and I've been to all these shrinks and doctors and none of them ever diagnosed it. You know, I consider myself reasonably intelligent, reasonably well-read, reasonably well-informed.
Tourette: Sounds pretty reasonable so far

Vernon: Wise guy.
Tourette: It's called echolalia. I can't help it.

Vernon: But after getting this diagnosis, I feel like I mean, like, I feel like I was some kid whose parents kept him locked up in the basement or the attic all his life. You know BIG TABLOID HEADLINES! Like, "ABANDONED BOY FOUND, RAISED BY WOLVES."
Tourette: Raised by wolves! At least you had parents, regardless of species.

Vernon: The point is, where was everybody -- my family, my doctors -- while all this stuff was happening to me?
Tourette: Well, you can take this key. Unlock the basement door or the attic door and find out.

Vernon: That's what I was afraid of. I go home alone either way.
Tourette: That's the way the deal goes.

Vernon: Now I know what to expect. But, you know what? Now that I know it, there's still this part of me that's asking, "Why me?"
Tourette: Why not you?

Vernon: I mean, I close my eyes and I see this image of myself, maybe ten or twelve years old, lying on a cot or some kind of institutional bed. A hospital bed, I guess. The left side of my jaw's all puffed out, kind of like the left side of my neck when I had Hodgkin's Disease the first time. And then while I'm lying there, my left leg just kicks straight up. Like rigor mortis or something.
Tourette: More like Tourette, I'd say.

Vernon: Is that a symptom?
Tourette: Could be. One of many.

Vernon: And I keep thinking, "I was a good kid." Looks like life threw me a major league curveball. I've been going through what I guess must be mid-life crisis, I've been on antidepressants since a record deal fell through, and now I find out I've got one of the most highly stigmatized medical conditions around. I mean, really: WHY ME?
Tourette: You remember the old joke from about sixth grade?

Vernon: Which one?
Tourette: I don't remember it all, but it's about this guy who has all kinds of really terrible things happen to him, kind of like the story of Job. Finally, he asks God the very same question you're asking. You remember the punch line?

Vernon: No.
Tourette: That's too bad. We're not supposed to use profanity here.

Vernon: Well, you've led me this far. You've got to tell me something.
Tourette: I'll modify the punch line.

Vernon: Come on. Just tell me.
Tourette: To adapt it to your situation, the punch line would be: "You know, Frazer, for some reason, you just tic me off."

The next interview wasn't formally scheduled. The interviewer was studying himself in his bathroom mirror, when Tourette appeared off to one side of the reflection, wearing casual clothing identical to the interviewer's: a sports shirt loud enough to border on luminescent.

Vernon: ...27, 28, 29, 30.
Tourette: I'm glad to see one of your Obsessive-Compulsive behaviors is achieving maximum efficiency.

Vernon: This isn't my counting OCD. I'm trying to count my total number of tics. I started at the top of my head, and haven't even reached my mouth yet.
Tourette: If you've only gotten that far, you'll need to be an autistic savant to count all of them.

Vernon: Is it ADHD if I stop before 1,000?
Tourette: How do you expect me to answer that? You're beginning to see how different each of my manifestations can be.

Vernon: Really? According to this book (he waves a hardcover copy of "Tourette syndrome: The Bad Seed?" at the mirror) I've had about two-thirds of the listed symptoms, at one time or another.
Tourette: You haven't had all of them at once.

Vernon: They'd shake my body apart if I did.
Tourette: Then you've seen the spectrum.

Vernon: Yeah. Alcoholism, drug abuse, domestic violence, crime, ADD, ADHD, overeating, depression...It's enough to make you --
Tourette: Commit suicide?

Vernon: Yeah, uh, execute a terminal symptom.
Tourette: You should have started at page 298.

Vernon: The part that tells what's good about Tourette? I read it.
Tourette: So you know about promiscuity, you sly old devil.

Vernon: You're being oppositional again.
Tourette: Sorry. I can't help it.

Vernon: I meant the creativity, the photographic memory, the extra-fast reflexes...
Tourette: Tourettic speed...

Vernon: Is that they call it? I guess that explains why I used to leg routine singles into doubles when I played softball.
Tourette: Maybe the coed outfielders had weak throwing arms.

Vernon: Could be that, or it could be your oppositional nature trying to put me down. Anyway, once I got past the frightening stuff, I started finding explanations for my whole life.
Tourette: You mean, alcoholism, drug abuse, domestic violence, crime, ADD, ADHD, overeating, depression...

Vernon: I was thinking more the echolalia, the polydipsia --
Tourette: You drink too much even when it's non-alcoholic.

Vernon: ...the obsessive-compulsive behaviors. I never knew I had so many.
Tourette: How many do you have?

Vernon: Somewhere up in the thousands. I don't think I could sit still long enough to count them all.
Tourette: Neither could I. I've got enough trouble watching you count the number of strokes of deodorant you put on, or watching you run in and out of the house three or four times to make sure the stove's turned off..

Vernon: Ever since I was six or seven, I've been trying to cope with all those tics and symptoms or conceal them. I even found my very first symptom, a fake paralysis of my left side, when I was six or seven. According to the book, it's a typical first symptom.
Tourette: And you always thought you were so weird, so different, so...outrageous.

Vernon: But in terms of Tourette I'm outrageously typical. The problem now is, where do my symptoms end and my personality begin?
Tourette: You have no personality. Only symptoms.

Vernon: That's my line! You stole my line!
Tourette: I couldn't help it. One of the criminal symptoms of the disorder...

For the next interview, Tourette wore a doctor's white gown and juggled brown plastic pharmacy bottles in front of a manic grin. Occasionally a bottle would fly out of range and Tourette, in the act of retrieving it, would nearly stick his hand through the mirror where the interviewer stood, a distressed expression on his face.

Tourette: How about a little Haldol?
Vernon: No way will I even touch that stuff.

Tourette: The first one's free, dude.
Vernon: That's what every pusher says.

Tourette: For some doctors it's the first line of treatment.
Vernon: And the easiest. Just load the guy up, let him turn fat and sluggish so he sits around all day poking his tongue into his cheek.

Tourette: It's just a small dose. Minuscule, actually.
Vernon: And trade one set of irreversible twitches for another? No way!

Tourette: You're very resistant to treatment.
Vernon: Resistant! I've spent the past four months more zoned out than I ever was in the sixties. Prozac turned me into a blissed-out sexless geek fit for writing Birthday Cards. Clonidine knocked thirty points off my IQ and at least as much off my blood pressure -- which is already on the low side. I'm ready to adopt the Reagan Slogan: Just Say No! I knew going into this diagnosis that I've lived most of my life with this condition. I made a choice before I even scheduled the appointment: I'd rather twitch and swear and rant and rave and be the creative person I am than take some poison that will turn me into a socially appropriate zombie.

Tourette: I think I'd like you better as a socially appropriate zombie.
Vernon: I don't care what you think.

Tourette: Now you're being oppositional.
Vernon: I'm mad as hell and won't take it anymore.

Tourette was more composed at the next meeting, as was the interviewer. Each appeared well-groomed and relaxed in the bathroom mirror, the meeting site deemed mutually convenient between oppositional outbursts. Both Tourette and the interviewer wore brightly-colored shirts, characteristic of their flamboyant personalities. Sprawled across opposite ends of a modular sofa, each spoke with a relaxed demeanor.

Tourette: You look pretty chipper today.
Vernon: I am. I had a great day yesterday.

Tourette: What happened? You experienced a Harmonic Convergence of alcoholic and narcotic excess, overeating, and promiscuity? Way to go, dude.
Vernon: Maybe overeating. That's about all I could do at a picnic.

Tourette: How disappointing.
Vernon: Not at all. It was the first time I ever met other people with Tourette.

Tourette: Did they twitch and shout at you?
Vernon: No, but one guy whose kid had Tourette apologized for coughing. He had a cold. I told him he didn't have to apologize, that I coughed whether I had a cold or not.

Tourette: You're getting a sense of humor about it. That's a good sign.
Vernon: It was a good day. In some ways it was one of the best in my life.

Tourette: A picnic? One where you didn't indulge in every intemperate device and personal excess known to sedate the Tourettic's hyperactive central nervous system?
Vernon: There was plenty of brain juice flowing. I was talking with two Ph.D's, there were three musicians there, a successful businesswoman...It was a group of some of the most intelligent and accomplished people I've ever spent time with.

Tourette: Doesn't surprise me one bit. Some people say we're 15 IQ points above the norm, on average.
Vernon: It sounds about right to me. They had a lot on the ball. And you know what? When I talked, they actually listened to what I had to say.

Tourette: There's no known correlation between IQ and common sense.
Vernon: Come off it. You're just --

Tourette: Being oppositional. I know.
Vernon: Anyway, it was fascinating. I heard a lot of kids who had the same reedy quiver that I have in my voice.

Tourette: Ah, the Eternal Adolescent!
Vernon: No, the Eternal Patsy. That's the tone "normal" people sense as uncertainty or insecurity and use as an excuse to pounce on us. They think the sound means we're weak.

Tourette: Oh. The Eternal Paranoid.
Vernon: Come on. You know the stories. Each of the people I met had some harrowing tale of deprivation to tell. Social ostracism, job discrimination...What I heard was that most of us consider ourselves as discriminated against as any racial or ethnic group, except that our difference is based on brain chemistry.

Tourette: Next thing, you'll be demanding Civil Rights.
Vernon: I'm already demanding Civil Rights. I've used the Americans with Disabilities Act to get a bad boss off my back and to get myself a computer to use at work.

Tourette: Way to go.
Vernon: Another thing that happened at the picnic was that I found a kid who memorizes telephone numbers, like I do. We traded ours without writing anything down.

Tourette: Sounds like you had fun.
Vernon: I did. But that's not the most important part. You know, I've spent most of my life as an outsider. I've tried to fit in everywhere, even among the so-called misfits, and no matter where I went, no matter what I did, I always ended up on the outside. That picnic was the first time in my life I felt like I really belonged somewhere.

Tourette: You mean, in the High School of Life you've finally been accepted into a clique? Way to go, dude. Put it there. (His hand, thrusting forward for a handshake, crunches against the back of the mirror.) OOOOUUUUCH!
Vernon: It goes a little deeper. It wasn't just friends, it wasn't just family. I found a People.


VERNON FRAZER is the author of two poetry collections, "A Slick Set of Wheels" and "Demon Dance". Both books were written prior to his diagnosis with TS at age 48. His music can be heard on the audio cassette "SLAM!" and the record album "Sex Queen of the Berlin Turnpike." To read more about these selections, look at BOOKS or RECORDINGS page on this site. Vernon Frazer's web page features an archive of published and un-published poetry, and an electronic magazine or more adult oriented Tourette Writings. See the RESOURCES page for a link to VERNON FRAZER'S WALK ON THE WILD SIDE.

MONKEYS INTERACTIVE: Do you like the interview format? Is there anyone in the Tourette Syndrome community you would like to see interviewed? Let us know seligman@sonic.net.

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