Now that we've gotten that out of the way, we return you to the Tourette's syndrome support-group meeting currently in progress.
"Yeah, you're in the right," says the meeting's good-natured host as she welcomes a couple of newcomers into a recent monthly gathering of the group. "The AA meeting's down the hall. We're the 'cussing disease' people."
Although several laugh, the 30 or so people assembled in a meeting room at a Glendale hospital realize that there are a lot more symptoms to Tourette's syndrome than uncontrollable bursts of gutter language, a misconception popularized by a widely seen episode of L.A. Law. The people here tonight are all parents of children affected by the syndrome. They know all about the involuntary motor tics--unpredictable spasms that cause their children's eyes to blink, their heads to twitch and their shoulders to jerk. They're aware of the vocal tics that force their offspring to emit unearthly grunts, gurgles, belches and whooping noises. And they're all too familiar with the attendant obsessive-compulsive behavior, attention-deficit problems and intrusive thoughts that frequently accompany Tourette's. Parents know Tourette's as a group of mysterious disorders that compel their children to endlessly repeat pointless rituals, even though the youngsters themselves realize the senselessness of touching objects a certain number of times, or circling answers on their homework so many times they tear a hole in the paper.
Although the hereditary disorder was first identified by French neurologist Georges Gilles de la Tourette in 1825, it wasn't until the past 20 years that the disease was widely diagnosed. In the 147 years prior to 1972, when the national Tourette Syndrome Association was founded, fewer than 1,000 cases of Tourette's had been reported worldwide. But in today's era of increased Tourette's reseach, experts today estimate that as many as 200,000 people may suffer from the condition.
Specialists now chalk up those large numbers to increased awareness of the condition. "I don't think there is actually any more of it than there used to be," says child psychiatrist Anna Scherzer, one of only a handful of doctors who treats Tourette's in the Valley. "We're just aware of increased associated problems or symptoms and we're no longer limiting the diagnosis to the narrow band it was limited to 20 years ago."
Some members of the psychiatric community now see Tourette's syndrome as a model for understanding the brain; in fact, those who have the disease are encouraged to leave their brains to science. Eric Benjamin, a Valley pediatrician active in the Tourette's field for eight years, points to the wide-ranging symptoms associated with the disease, and says, "When you start looking at these, you see a whole cross section of behaviors that represent almost everything in psychiatry."
Tourette's researchers now know that symptoms typically appear between the ages of 5 and 18. Because the disease cannot be detected through brain scans, x-rays or blood tests, a diagnosis is based on the waning and waxing of tics and other related symptoms over a period of time. For reasons that are still unclear, sons are not only more likely to inherit the disease than daughters, but also more apt to suffer from far more severe symptoms.
Like many of adult Touretters, Rick Gayle has learned to cope with the disorder. That wasn't the case 30 years ago, when grade-school teachers believed his quirky behavior was an "attitude problem" and an "attention-getting" device. "I guess my behavior was very disruptive," concedes Gayle, explaining that his inappropriate laughter, inability to inhibit his speech and other uncontrollable antics earned him a reputation as class clown. But the reality was different. "I always felt like a ColorForm, sort of like I was just laid on the surface of things and didn't really fit in anywhere," explains Gayle, a commercial photographer who credits his business success to his Tourette's-related obsession with detail. "Living with Tourette's is like having the Tasmanian devil trapped inside you."
The photographer is now reliving the childhood stages of the disease through his 13-year-old son. Says Gayle, "It's very difficult to look at him and know he's going to have to go through the same things I did." In spite of Tourette's most notorious symptom, the only obscenity heard during this three-hour support session is a solitary utterance of the "F" word, spoken by an angry father as he tells the group of his frustrated attempt to get the principal of his son's school to watch a short Tourette's video over the summer vacation.
"He told me he didn't have time, if you can believe that," fumes the dad. "This guy didn't have 30 minutes free the entire summer?"
"As you can see, we do a lot of school bashing," explains Rick Gayle's wife, Betty, the animated woman who's headed up the Glendale-based support group for the past several years. Judging from the recent meeting held at Charter Hospital, the group also does a lot of insurance-company bashing, doctor bashing, neighbor bashing and medication bashing--even if there rarely seems to be any consensus on exactly who or what deserves to be bashed. After chatting about Denver Nuggets guard Mahmoud Abdul-Rauf, Philadelphia Phillies outfielder Jim Eisenreich and actor Andy Garcia--celebrity Touretters who've publicly discussed their affliction--the group turns its conversation to suspected Touretters who've yet to emerge from the closet. ("Has anyone noticed how David Letterman starts blinking whenever he introduces a guest that makes him nervous?" someone asks. "He's ticking like crazy!")
The session occasionally even threatens to degenerate into a perverse game of "Can You Top This?" After one woman announces that her child has begun obsessing over cutlery, another mom reports that she woke up one morning to find her own child standing over her bed with a knife. But all sharing and caring aside, the meeting's biggest benefit for many parents may simply be the opportunity to get out of the house for a few hours--sans kids. Attending their first meeting with youngster in tow, the parents of 8-year-old Brennan are not so lucky. From all appearances, Brennan is a bright child--he's somehow able to memorize the names of an entire roomful of strangers without taking his eyes off his Game Boy. But based on some truly frightening shenanigans that occur during the evening, he's also a troubled child. Fixating on a Coke machine he's spotted out in the hall, Brennan suddenly turns manic, begging his mother for 50 cents. When she refuses him, he frantically runs around the room chanting, "Gottwoquarters? Gotwoquarters?" as if his life depended on it. After his mother drags Brennan back to where she's sitting, the near-hysterical child begins kicking her in the shin in a rhythmic fashion. "If you don't stop that, I'm taking the Game Boy away," she warns.
"Okay," agrees Brennan. "But just one more." Then, after letting his mother have it in the leg one last time (his mom later explains her son was finishing a "pattern"), he settles down with his Game Boy.
If this disturbing vignette strikes you as vaguely reminiscent of The Exorcist, you aren't alone. Twenty years ago, when the movie version of that demonic-possession shocker was still breaking box-office records, The Journal of the American Medical Association printed an item suggesting that the subject of the true-life exorcism that inspired William Peter Blatty's novel was actually a Tourette's sufferer. Recognizing familiar symptoms on the screen, a number of previously undiagnosed Touretters reportedly even requested exorcisms from the Catholic Church.
Though no Touretter on record has ever demonstrated the fanciful head-swiveling, levitation, telekinesis and projectile vomiting Blatty used to sensationalize his tale, several of the startling traits exhibited by the young antiheroine have counterparts in the traditional pathology of the condition. Spasmodic facial and vocal tics are common, and youngsters with Tourette's have been known to fly into involuntary fits of rage. And while less than half of all Touretters will ever experience coprolalia--an uncontrollable torrent of obscenity, racial epithets or other socially unacceptable language that the subject is incapable of suppressing--shocking speech is another very real manifestation of the disorder.
Today, medication--not arcane religious rituals--is the preferred way of treating Tourette's. While there's currently no cure for the disorder, a variety of drugs (including Prozac) are frequently prescribed to keep symptoms under control. Because of the wide range of symptoms, types and quantities of medication must be fine-tuned to the individual patient.
But there's sometimes a high price tag on that relief. Haldol, a drug useful in treating obsessive-compulsive behavior, often exacerbates and unmasks other tics. Youngsters taking Tourette's medication frequently experience considerable weight gain, a problem that does little to endear them to their insensitive peers. And at least one parent complains that the drugs make her son so lethargic that he sleeps 12 hours a day. She's afraid to leave him alone for fear he'll fall asleep and doze through a fire.
Lighting up a cigarette in the kitchen of her comfortable home in west Phoenix, Rick Gayle's wife, Betty, ignores the phone that is ringing in the background. "I'm not answering that," explains Gayle, the Arizona contact person for the Tourette Syndrome Association. "I'm Touretted out."
Although Betty Gayle doesn't suffer from the condition herself, Tourette's has taken its toll on her. In addition to living with a husband and son who have the condition, practically everyone else she comes in contact with either has Tourette's or is calling on behalf of someone who does. "The minute anyone finds out their kid has Tourette's, they call me," she continues. "The worst is when school starts every year. Some of these women actually want me to go to school with them because they're too afraid to deal with the teachers." Gayle shakes her head. "Maybe I'm getting jaded but, hey, folks, Tourette's is not the end of the world. Did you see What About Bob? Someone asks Bill Murray what's worse than death. Bill Murray says, 'Tourette's.' You've got to laugh--or you'll cry."
With hindsight, Betty Gayle can now chuckle over mortifying incidents of the past--like the shopping trip a few years ago when her son and his visiting cousin (who also has Tourette's) began obsessing on a phrase they'd seen in an ad for condoms.
"These kids kept walking through the stores repeating the phrase 'ribbed for her enjoyment, ribbed for her enjoyment.' Well, of course, everyone's looking at me. What kind of mother lets her child talk like that?"
Pointing a finger at herself, Gayle grimaces in comic fashion. "Fortunately, that one only lasted a couple of days. Other times he'll obsess on some jingle on a TV commercial and he just keeps going and going and going." Gayle snuffs out her cigarette. "Does it drive me crazy?" she asks. "You bet! My child talked like Donald Duck for an entire year. Believe me, it's very frustrating trying to talk to a child who will only talk like Donald Duck." In spite of the new understanding and pleas for openness surrounding Tourette's syndrome, a stigma continues to hang over the disorder. Citing a variety of real or potential problems, all but two of the parents interviewed for this article requested that their real names and certain details that might identify them be changed. Not surprisingly, none agreed to be photographed.
"Just use a picture of anyone," quips Betty Gayle. "Touretters look just like everybody else.
For young Touretters, that may ultimately prove to be the biggest stumbling block to wide public acceptance of the disease. Without a scorecard, how can anyone tell the difference between a genuine Touretter and a kid who's simply a candidate for Brats Anonymous?
"Every kid has problems and every kid has bad days and bad times," explains Scottsdale child psychiatrist Marcia Liken. "What you've got to look at is the quantity and quality and frequency of these acts. The normal kid does not go around washing his hands a million times a day. The normal kid is not distracted by everything in his environment."
In what can only be viewed as a bow to political correctness run amok, the Tourette Syndrome Association has produced an educational tape named A Regular Kid, That's Me. The tape's upbeat title would evoke bitter laughter from some parents dealing with Tourette's--if only they had the energy.
"The children with Tourette's are different, no doubt about it," says Samantha, a Tourette's parent with the dark circles under her eyes to prove it.
A single mom who suffers from Tourette's herself, Samantha recently compiled a detailed account of "a day in the life" of her son Derek, an 11-year-old whose Tourette's-related behavior proved so disruptive to classmates that he is now schooled at home. After plowing through the exhausting recital of her son's frequent inabilities to cope with even the least demanding routines, it's easy to see why the haggard-looking mother proclaims, "It is impossible for the family to know what a 'normal' life is, because the child's symptoms make their lives a living hell." Even something as simple as getting her child dressed in the morning usually turns into a major production, reports Samantha. If a garment doesn't feel just "right," Derek flatly refuses to wear it and tosses it on the floor. When he finally does get dressed--after tying and retying his shoes a set number of times--his compulsiveness forces him to change his clothes so many times during the day that Samantha claims she feels like she's doing laundry for a family of 12.
When not engaged in one of his many hobbies (his mom boasts that he's got an encyclopedic knowledge of comic book superheroes and Coca-Cola collectibles), Derek's obsessive-complusive disorder forces him to fritter away hours with pointless activities. "If he has to go from one room to another, he has to open and shut the doors a certain number of times or flip the light switch on and off," says Samantha. "If something interrupts him and he loses his place, he'll have to start all over again. It's nearly impossible for him to get anything important done."
If domestic life with a young Touretter is no picnic (Samantha's son washes his hands so often that he can easily empty an entire bottle of liquid soap in one day), a family outing to a shopping mall rarely fails to turn into a waking nightmare. Obsessing over merchandise he can't live without, the hysterical child often plops himself down in the middle of an aisle and refuses to move until Samantha either buys the item or physically drags him out of the store. "Because of his obsessive-compulsive disorder, if he wants something, he's got to get it right then and there," explains Samantha. "But it's gotten to the point where I just can't buy him anything he wants anymore." She sighs wearily. "I constantly have people coming up and telling me how rude, unruly and obnoxious my son is."
Dee, the mother of an 11-year-old Touretter named John, agrees. Unlike Samantha's son, however, Dee's child finally seems to be making some headway with his obsessive tantrums. "He's getting to the point where he knows whether he can handle going out in public or not," say his mother. "There are days when he'll just say, 'Mom, I'm not in full control--I don't think we should go out today.' In that respect, we're making some progress." Unfortunately, the same can't be said for John's recent death-defying penchant for playing in traffic. "If we're walking on the sidewalk, facing oncoming cars, he has this urge to take three steps out from the curb and three steps back before the car gets there," says Dee. "Even though he realizes this is foolish, ridiculous and dangerous, he can't stop himself.
"Even when he was little, he was doing stuff like that," recalls Dee. "He used to insist on putting on his roller skates upstairs, then he'd always jump the last five steps and land on the sidewalk." Dee laughs. "He was really quite good at it, too. The other kids in the neighborhood would try it and they always got hurt."
What might a young Touretter look forward to as an adult? The product of solid Tourette's stock, our friend Brennan need only look to his parents. Dorothy and Michael also suffer from the disease, something the pair hadn't realized until their son's condition was diagnosed five years ago.
"My gosh, this is me!" Dorothy remembers thinking, after a psychiatrist finally put a name to her only child's strange collection of physical tics and behavioral patterns. Up until that time, Dorothy reports she and her husband had simply written off their own idiosyncrasies--compulsive cleaning, endless organizing, minute attention to detail--as personal quirks that paid off in the workplace. Looking back at her side of the family, Dorothy has since tentatively identified Tourette's-like symptoms in at least four other relatives. "My own mother was extremely compulsive," Dorothy reveals. "During the Sixties, long before everyone became so fitness conscious, people thought she was a little weird because she was taking ten exercise classes a week."
No slouch in the obsessive-compulsive department, husband Michael identifies himself as a "checker," a trait he shares with his wife. "If we both sit down to watch television, one of us is always getting up to check something," says Michael. "I might focus on the garage door and get up 24 times to make sure that it's locked. Meanwhile, my wife might keep checking to see whether the stove is turned off. It's just something we have to do--and it's always a certain number of times that we have to do it." Oddly, however, neither partner has much compassion for the other spouse's deep-seated need to check "just one more time."
"It's crazy, but when we're 'checking,' what seems so important to one of us means absolutely nothing to the other one," says Dorothy. "I'll tell my husband to stop worrying, the door's locked.
"But at the same time, I'm running into the kitchen for the 30th time. 'Did I really turn the coffeepot off?'"
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Sorting through the hodgepodge of weird behavioral problems that plague young victims of this baffling disease, one question looms large:
Where does the kid end and the Tourette's begin?
Shrugging, Betty Gayle nods in the direction of her son, a teenage Star Trek fanatic who is currently poring over the liner notes on the latest Trekkie video.
"This is the whole package, and you can only try to do the best you can," she explains. "These kids are fighting a battle every day. When he was first diagnosed, I fell into the trap of feeling so sorry for him that I overcompensated in other ways, buying him things, stuff like that. Then I realized that he's got to learn to live with Tourette's."
And in the process, so has his mother. "Anyone who's got a kid with Tourette's has pretty much gotten used to being called a 'fucking bitch,'" says Gayle. "That goes with the territory." So do a lot of other problems that have nothing to do with the usual tribulations of parenthood. After he saw a television program about UFO abductions, Gayle's son became convinced that space aliens were going to kidnap him while he slept. "We're still working on that one," says Gayle, smiling. "It's been a lot of fun." Gayle shrugs. "These kids are bright, the disease can be controlled and it's not a life-threatening condition. But you've got to be able to deal with Tourette's with a sense of humor--if you don't, you're going to kill yourself.