CHICAGO — By age 7,
Anthony Barone was already descending into a confusing world
of obsessive thoughts and compulsive behaviors that would
dominate his life.
As a boy, he recalled, he felt driven to do
things over and over. He would obsessively run his hands
across his school desk. He would constantly move his pencils
and pens in and out of his desk. He would complete his
schoolwork and then erase it, repeating the ritual endlessly.
He could not stop tapping, touching and
counting things.
Even the promise of sleep did not offer
relief. Unable to resist the urge, Barone said, he would
repeatedly crawl out of bed to stroke a crucifix hanging on a
dining room wall or handle other objects in the darkened room.
In part because of doctors who failed to
diagnose his condition, it wasn't until Barone was 50 that he
realized that he suffered from obsessive-compulsive disorder,
or OCD. It was 13 more years before he received effective
treatment that allowed him to lead a more normal life.
Barone's experience may be extreme, but it
is not entirely uncommon. People with OCD frequently struggle
for years with the disorder because they do not get an
accurate diagnosis or appropriate treatment.
Now 72, Barone said he is content with his
life, savoring experiences he once avoided and cherishing old
friendships while cultivating new ones.
But he also feels a profound sense of loss
for the life that could have been. He dropped out of high
school and never married. The product of a large
Italian-American family, he thinks about the children and
grandchildren he never had.
"OCD affected every part of my life —
emotionally, sexually, professionally, mentally," said
Barone, who wears silver-rimmed glasses that match the
remaining wisps of his silver hair.
"I missed so much."
Now that he is doing well, Barone has made
it his mission to educate teachers, doctors and mental health
professionals about the disorder.
"I don't want young people to go
through what I went through," he said, his booming voice
quieting.
During Barone's youth in the late 1930s and
1940s, OCD was rarely talked about and little understood. Now
it is getting regular airtime on TV shows such as
"Monk" and, more recently, on A&E's
documentary-style program "Obsessed," which focuses
on the lives of people being treated for OCD.
Yet experts in OCD say that despite greater
awareness of the disorder, too few therapists have received
specialized training to treat it. Research conducted in
conjunction with the Obsessive Compulsive Foundation found a
14- to 17-year gap between the onset of symptoms and effective
treatment.
"I call that a crime," said Daniel
M. Potter, Barone's therapist. "That's years of needless
suffering. What's even worse is that much of the delay is a
consequence of clinicians not making the diagnosis and/or
using the wrong treatment for it."
Scientists believe obsessive-compulsive
disorder is caused by abnormalities in the structure or
functioning of the brain. An estimated 4 million people in the
U.S. have the disorder, said clinical psychologist Jeff
Szymanski, executive director of the Obsessive Compulsive
Foundation, and up to 3 million more have some symptoms but
don't fit the psychiatric diagnosis.
Shana Doronn, a Barrington, Ill.-based
therapist who is featured on "Obsessed," describes
obsessions as unwanted thoughts, images, impulses, urges and
fears. "Compulsions are what the person does to reduce
the anxiety caused by these thoughts," she said.
Barone said that when he turned 12 his
worried mother carted him to the family doctor. The doctor
diagnosed his unusual behavior as a normal sign of puberty —
even though Barone had failed 4th grade and was about to
repeat 6th grade for the second time because of it.
Eventually, Barone recognized his symptoms
while watching a TV program about OCD and sought help. Later,
when his condition was finally diagnosed, he was treated by a
psychoanalyst untrained in his disorder.
By the time Barone met Potter, Barone's
illness had ballooned to encompass nearly every aspect of his
life. He washed excessively. He avoided using the phone during
certain hours, traveling down certain streets, entering
certain buildings. He also obsessively checked door locks and
stove burners.
"Imagine 60 years of this stuff,"
Potter said. "This guy had his life robbed from him. And
at this point, that's what he's dealing with."
According to the Yale-Brown Obsessive
Compulsive Scale, a standard psychological instrument that
measures OCD, Barone used to fall somewhere between the severe
and extreme range, leaning toward extreme.
But with the help of medication and talk
therapy, Barone was able to stop behaviors he had been
exhibiting for decades, Potter said. Like many people with a
diagnosis of severe OCD, Barone was prescribed
antidepressants, which he continues to take.
Now he falls in the low to moderate range
for the disorder, "a huge, huge change," said
Potter, executive director of the Midwest Obsessive-Compulsive
Disorders Center, which operates three area offices.
Bert DeLegge, Barone's friend since age 9,
said he had no idea of the agony Barone was going through.
Like many people with OCD, Barone hid his symptoms.
"I was really shocked because it was a
long time before I found out," said DeLegge, who has
known about his friend's OCD for only a few years. "It
never dawned on me that he was so sick. I never saw that
side."
Barone works as an information clerk at the
Illinois College of Optometry, where on a recent day he wore a
whimsical black tie with large white letters that mimic an eye
chart, a gift from some of the college's students.
Dr. Daisy Chan, a Chicago optometrist,
sought him out during a break from her continuing medical
education class.
"He's my grandpa; he's everybody's
favorite," Chan told a visitor as she embraced a jovial
Barone. When she pulled out a photo of her chubby-cheeked baby
son, Barone beamed like a proud grandfather.
The college's students and former students
have become like an extended family to Barone. Their photos
are carefully arranged on his desk along with those of his
relatives. He has been invited to students' weddings, birthday
parties, graduation banquets.
Barone, who is known for his charm and
warmth, credits personal relationships throughout his life
with saving him from isolation, loneliness and despair.
"I'm so thankful for the last 10 years
of my life," said Barone, who volunteers with the Chicago
affiliate of the Obsessive Compulsive Foundation. "I have
good friends. A good job for me. For me, I've been accepted
— even more than accepted, respected."
Potter marvels at the turnaround in Barone's
life.
"This is him living life in the best
way he can in the time that he has, and there is a richness in
that," Potter said. "He's certainly somebody who
makes sure at this point in his life to enjoy the richness
when it's available."