By SUSAN DONALDSON JAMES
From the age of 7, Frank Bonifas has endured the most severe form of Tourette syndrome, and it started long before the medical community even had a name for the neurological disorder.
Doctors convinced his parents that he could control his tics and outbursts, which had him grunting, jerking and swearing with impunity. They blamed his mother for coddling him and, in 1968, as a young teen, they sent him to a psychiatric hospital for 18 months.
Bonifas, now 58 and living in Coldwater, Ohio, experienced assaults by school bullies and was forced to take high-dose medications that made him so listless one year, he lost two months of school.
Even in hospital wards, he was tortured by staff members who thought his outbursts were deliberate. He even had to fight with Social Security to get disability payments because Tourette syndrome was not listed in the medical journals.
“I resented all psychiatrists, psychologists and social workers,” he said. “They had no idea what was wrong with me and blamed me, my mom, dad and sister for my problems.”
Now, in a self-published memoir, “Fu-Fu-Fu Frank,” he writes about his wrenching childhood and the determination he had to overcome the odds of living with a misunderstood disorder.
Bonifas prefaced his Thanksgiving day telephone interview with ABCNews.com in anticipation of his uncontrollable use of the “F word,” punctuated with grunts and screams.
“I am not a violent person,” he said. “I am a loving person who just has Tourette’s.”
Despite severe physical handicaps, Bonifas was able to write the book because of Marilyn Kanney, a former nurse and friend of his late mother who has loved and supported him since he was in high school. He calls her “a second mother.”
“She took my thoughts and put them into sentences and wrote them into paragraphs and chapters,” he said. “They were all my words, but she allowed me to make it a reality … It took us 15 years to finish it.”
Bonifas decided to go public with his story after friends encouraged him to write. His first goal was to educate others about Tourette syndrome. But the second was to be financially independent and get off disability assistance and Medicaid.
The turning point in his life was in 1973, when a husband-wife psychiatric team, Drs. Arthur and Elaine Shapiro of New York Hospital, gave his condition a name.
At 18, Bonifas was one of the first people in the United States to be diagnosed with Tourette syndrome.
“I taught my doctor everything he knows about Tourette,” said Bonifas. “Dr. Shapiro said to me at the time, ‘Frank, to your credit, you haven’t blown your brains out by now.
“I put my trust in doctors and nurses for the first time in my life,” he said.
According to the Tourette Syndrome Foundation, the disorder is defined by multiple motor and vocal tics lasting for more than one year. The verbal tics can include grunting, throat clearing, shouting and barking.
It was named for a French neuropsychiatrist, Gilles de la Tourette, who assessed the disorder in the late 1800s. But it wasn’t until the 1970s that it was widely recognized in the U.S., where it was thought to be exceptionally rare.
In 1980, the condition was broadened to include milder cases of tics. Fewer than 10 percent of all patients swear or use socially inappropriate words, which makes Bonifas’s condition so socially isolating.
The first symptoms, usually before the age of 18, are involuntary movements of the face, arms, limbs or trunk, such as kicking or stomping. They are frequent, repetitive and rapid. The patient cannot control these movements and they can involve the whole body.
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According to Dr. Jonathan Mink, chief of pediatric neurology at Rochester University, who sits on the board of the Tourette association, the disorder is still poorly understood and likely has a genetic link.
Many patients, like Bonifas, also have symptoms associated with attention deficit hyperactivity disorder and obsessive compulsive disorder.
“The majority of kids, even those bad enough to seek treatment, are likely to have their tics diminish or go away,” said Mink.
Habit reversal therapy — teaching a person with Tourette to hold his or her breath, for example, instead of saying the repeated word, can sometimes help. Antidepressants are used to treat associated anxiety.
Today, several medications have helped Bonifas manage his symptoms, but his early years were spent in torment, in and out of mental institutions, hospitals and experimental programs.
In the introduction to his memoir, doctors attest to the “exorcisms” that Bonifas underwent to rid him of his “demons.” He claims he was exploited and abused, even sexually, by many who were entrusted to care for him.
A devote Catholic and former altar boy, Bonifas once considered entering the seminary. Strangely, his first outburst of profanity occurred in the seventh grade when looking at a church spire.
The thought — “The Blessed Virgin Is a F***er” — just burst into his mind. He was convinced he would burn in hell.
But Bonifas had no control over that or other obsessive-compulsive habits, such as dressing, washing and brushing his teeth in a particular sequence.
His behavior in school was problematic, too. Teachers saw his outbursts as an attention-seeking device. He was “barking, snorting, sniffing, hissing and more.”
By high school, he was badly bullied. Seniors pulled down his pants, taunting: “Now we’ll see if he is a dog or a human being.”
Another time, he was pushed into a large garbage can and rolled down the steps to the first floor.
After being sent to a local hospital ward for treatment, he got “special care” more than a half dozen times. Orderlies confined Bonifas to a locked steel cell with a pillow and a pad. After that, he developed lifelong claustrophobia.
In exercise classes in a swimming pool, he claimed the leader seemed to enjoy dunking his head underwater until his lungs “nearly burst.”
But eventually, Bonifas found New York Hospital, where modern treatments and an educated and understanding medical team, gave him hope. He was the 35th patient Dr. Shapiro had ever treated.
His roommate was Dr. Orrin Palmer, a Maryland doctor who overcame Tourette and now practices psychiatry.
“Frank and I went through hell on these protocols,” Palmer wrote in one of the forwards in the book.
Doctors experimented with an array of high-dose medicines that caused side effects, such as insomnia, motor restlessness, mood swings and even Parkinson’s symptoms.
“I had to sign papers that I was a guinea pig,” said Bonifas. “If the medicine made me incompetent or I lost my mind or was comatose or died, they were not responsible.”
His response to his doctor’s orders was, “Just tell my small town that I am not the devil, not doing this on purpose and that I have a mind.”
After five months, his mother brought him home and things started to get better. Were it not for her, “they would have institutionalized me for life,” he said.
Today, Bonifas works as a part-time mail clerk at a local bank. He said life is still “incredibly difficult.”
But since the publishing his book, he said, “Many people have a better understanding of what I go through on a daily basis, and I have been treated much better.”
He takes a low dose of haldol, ativan, cogentin and many natural vitamins. Bonifas also has taken up yoga with a trainer.
Bonifas cares for his 88-year-old father who lives upstairs. His beloved mother died of Alzheimer’s disease in 2004.
“I just wish she were alive to read it, but my faith tells me that she is in Heaven and is proud of everything I’m trying to accomplish,” he said.
More recently, cultural attitudes toward those with Tourette syndrome have begun to change, according to Bonifas.
“Most people who have become familiar with it are more understanding,” he said. “However, many are not aware of how serious the disease is, still feel that anyone afflicted with it should be able to control all of its symptoms.”
Much still needs to be done, according to Bonifas.
“Parents and teachers can be more supportive and understanding of people who are different,” he said. “Children learn at a very early age how to treat others, and there are too many bullies today as a result of the prejudices of all who teach them.”
Bonifas volunteers in schools and organizations to help change attitudes.
With all the hurdles he has overcome, the dark shadow of growing up in a world ignorant of his needs still haunts Bonifas.
“I have tried to put my past behind me, but every day is challenging and difficult,” he said. “I’m working on it.”
“I think that all people should accept those who are different or handicapped,” he said. “They should have to spend one day in their shoes, and see how it feels.
His faith and the encouragement he has received from readers of his memoir keep him going.
“It just comes down to this: There is you and God,” he said. “I have a lot of faith and a lot of determination.”