the private war
Michael Doyle had been planning the trip
Hundreds of re-enactors would be
in San Juan, Puerto Rico, for the 1797
Defense of San Juan re-enactment on the
weekend of April 26. And the 19-year-old
Rockville resident planned to be among
them. He and other members of the Spanish Louisiana Infantry Regiment, a Washington, D.C.-area re-enactment unit,
would be helping to restage the historic
battle between Spanish and British troops.
A boyish-looking young man with
bright blue eyes, Doyle knew the trip
could be fraught with hassles and delays.
He suffers from Tourette syndrome, a
condition that makes most social activities difficult. While watching coverage of
the Boston Marathon bombings in the
days leading up to his trip, he had started
to compulsively repeat the word “bomb,”
and knew that the inevitable stress and
anxiety on the day of the flight could
make matters worse.
So Doyle’s doctor wrote a letter documenting his condition. Doyle and
his mother, Donna, also called Reagan
National Airport on April 24, the day
before his flight, to try to avert potential
problems. And Doyle made sure he was
wearing the medical alert necklace that
indicates he has Tourette syndrome.
On Thursday, April 25, Doyle and his
friend and fellow re-enactor Chaz Petteway made it through security without a
snag and found themselves at the gate a
couple of hours early. But Doyle was “
tic-cing,” as Tourette patients say. Petteway
explained to others at the gate that his
friend had Tourette syndrome and was
not a threat.
“Everyone was extremely understanding,” Doyle says.
But just before the passengers were to
begin lining up to get on the plane, a JetBlue gate agent told Doyle that the plane’s
captain had deemed him a security risk,
and that he would not be allowed to board.
FOR DOYLE AND OTHERS living with
Tourette syndrome, the JetBlue incident
is an extreme example of the kind of
trials they endure daily. Doyle’s verbal
tics, however, are particularly troublesome because they include the involuntary use of obscene or socially inappropriate words and phrases, a behavior
known as coprolalia.
The Centers for Disease Control and
Prevention in Atlanta says it’s not known
exactly how many people have Tourette
syndrome, but the organization estimates that three of every 1,000 children
age 6 through 17 in the United States are
dealing with the disorder.
About 15 to 20 percent of Tourette
patients are afflicted with coprolalia, says
Doyle’s doctor, Laurence Pezor, a child
psychiatrist with the Frederick County
Health Department. Doyle’s speech is
peppered with loud utterances of the
“f” word, among other things. As is the
case with all Tourette patients, stress and
anxiety can make his symptoms worse.
But apart from that, Doyle “has one
of the more classic presentations of full-blown Tourette’s,” Pezor says. “We say he
has the ‘triad of Tourette,’ which means
ADHD-like symptoms, anxiety disorder or obsessive thinking, and vocal and
motor tics,” says Pezor, who also serves
as a child psychiatrist with the Child and
Adolescent Center in Columbia.
Dr. Harvey Singer, the Haller Professor of Pediatric Neurological Diseases at
Johns Hopkins in Baltimore, says there’s
some evidence that Tourette syndrome is
an inherited disorder, though researchers haven’t identified a genetic abnormality that causes it. He says it’s possible to have the gene without expressing
symptoms, and that environmental factors such as trauma or infection might
cause symptoms to emerge. But it’s
unclear what happens in the brain to
cause Tourette symptoms, he says.
There’s no cure for Tourette syn-
drome. Treatment options are limited,
mostly consisting of anti-anxiety med-
ications and some behavior therapy to
teach patients relaxation techniques or
habit-reversal strategies to try to sup-
DOYLE WAS 7 when he was diagnosed
with Tourette syndrome. At the time, his
mother noticed that he’d developed eye
and facial twitches.
“I’d say, ‘What are you doing?’ ” Donna
Doyle says. “He’d say, ‘I don’t know. I can’t
help it.’ ”
The family visited a neurologist who
tested Michael Doyle and found that he
had a high IQ, ADHD and a mild case
of Tourette syndrome. He explained that
Doyle’s symptoms could progress to vocal
tics—screaming, barking or repeating
other people’s words, for example.
By fourth grade, he was rolling his neck
and flailing his body. By the time ver-
bal tics started in middle school, “he was
calling home every day,” Donna Doyle
says. “He’d get made fun of and go to the
health room, saying he didn’t feel well and
wanted to go home.”
Meanwhile, Michael Doyle’s anxiety
increased as he tried unsuccessfully to
suppress his symptoms.
“It feels like an unbearable itch in my
throat, and the only way to stop the itch is
to let the word come out,” he says.
The words have changed over the
years—he spent most of middle school
saying, “Go to hell”—but the disorder itself
has been constant.
The teasing got worse as Doyle grew
older, and he switched schools multiple
times, bouncing between Frederick, where
his father lived, and Rockville, where
Doyle lives with his mother and maternal
grandfather, Vincent Carrera. Doyle eventually graduated from Frederick County’s
special-needs Pyramid Program at Walk-ersville High School.
“Kids were mean, and most teachers
didn’t understand,” Doyle says. “I’d get sent
to the principal’s office on a regular basis.
In history, we’d learn about how our country was founded on the idea of tolerance
for different religions and different ideas.
Yet for people like myself, the idea of tolerance doesn’t seem to apply.”