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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.
Vernon: Then, why didn't you return my messages?
Vernon: Oppositional?
Vernon: That's nice to know, but it doesn't help me.
Vernon: How does it help me?
Vernon: Use what? Being oppositional?
Vernon: I'm sorry. I guess it's my frustration..
Vernon: Then, you think I have Tourette syndrome too?
Vernon: You sound just like my shrink.
Vernon: For not knowing anything! Give me a break. I'm not some
pill-swallowing hypochondriac.
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.
Vernon: For one thing, she's a nurse. For another, her ex-lover and daughter
have Tourette syndrome.
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.
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.
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?
Vernon: Good. Maybe now we're getting somewhere. 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!"
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?
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.
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.
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.
Vernon: I don't need to take abuse from you, either.
Vernon: Part of my nature too is that I'm creative. The doctor said people
with Tourette tend to be creative, too.
Vernon: If it does, I'll take it. Do you have any evidence?
Vernon: That's anecdotal evidence.
Vernon: Multi-tasked?
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.
Vernon: And you're coming across just like a lot of the normal people I've
known.
Vernon: I think you're just trying to assimilate with the normies. And I
don't believe your story, either.
Vernon: That's more the way it used to go with me.
Vernon: You're digressing. You know what's humiliating to me?
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.
Vernon: Wise guy.
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."
Vernon: The point is, where was everybody -- my family, my doctors -- while
all this stuff was happening to me?
Vernon: That's what I was afraid of. I go home alone either way.
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?"
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.
Vernon: Is that a symptom?
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?
Vernon: Which one?
Vernon: No.
Vernon: Well, you've led me this far. You've got to tell me something.
Vernon: Come on. Just tell me.
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.
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.
Vernon: Is it ADHD if I stop before 1,000?
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.
Vernon: They'd shake my body apart if I did.
Vernon: Yeah. Alcoholism, drug abuse, domestic violence, crime, ADD, ADHD,
overeating, depression...It's enough to make you --
Vernon: Yeah, uh, execute a terminal symptom.
Vernon: The part that tells what's good about Tourette? I read it.
Vernon: You're being oppositional again.
Vernon: I meant the creativity, the photographic memory, the extra-fast
reflexes...
Vernon: Is that they call it? I guess that explains why I used to leg routine
singles into doubles when I played softball.
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.
Vernon: I was thinking more the echolalia, the polydipsia --
Vernon: ...the obsessive-compulsive behaviors. I never knew I had so many.
Vernon: Somewhere up in the thousands. I don't think I could sit still long
enough to count them all.
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.
Vernon: But in terms of Tourette I'm outrageously typical. The problem now
is, where do my symptoms end and my personality begin?
Vernon: That's my line! You stole my line!
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?
Tourette: The first one's free, dude.
Tourette: For some doctors it's the first line of treatment.
Tourette: It's just a small dose. Minuscule, actually.
Tourette: You're very resistant to treatment.
Tourette: I think I'd like you better as a socially appropriate zombie.
Tourette: Now you're being oppositional.
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.
Tourette: What happened? You experienced a Harmonic Convergence of alcoholic
and narcotic excess, overeating, and promiscuity? Way to go, dude.
Tourette: How disappointing.
Tourette: Did they twitch and shout at you?
Tourette: You're getting a sense of humor about it. That's a good sign.
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?
Tourette: Doesn't surprise me one bit. Some people say we're 15 IQ points
above the norm, on average.
Tourette: There's no known correlation between IQ and common sense.
Tourette: Being oppositional. I know.
Tourette: Ah, the Eternal Adolescent!
Tourette: Oh. The Eternal Paranoid.
Tourette: Next thing, you'll be demanding Civil Rights.
Tourette: Way to go.
Tourette: Sounds like you had fun.
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! |
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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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