BY SUE MacDONALD
The Cincinnati Enquirer
When it started in the spring of 1993, Peter Cassinellifelt depressed, didn't want to go to school and was oddly suspicious of smells.
"I heard voices," says Peter Cassinelli.
(Patrick Reddy photo)
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He was certain the Ritalin pills he took for a learning disability caused him to emit a strange body odor.
"I thought the kids at school were making fun of me because of the odor," says Peter, who was a junior at Princeton High School at the time.
Showering several times a day, sometimes rubbing his skin nearly raw, didn't end the continued worries and fretting about body odor. For the Cassinelli family of Glendale, those unusual symptoms progressed and deepened, eventually leading this past summer to a diagnosis of schizophrenia for Peter, 22, oldest son and fraternal twin,and brother to three younger sisters.
"I heard voices," he says. "I heard references to my cousins. I heard voices telling me not to do this or to do that, whatever it is. They were just ongoing voices."
The diagnosis marked the end of a five-year struggle to find a valid explanation for Peter's behavior -- and the beginning of a new chapter for the Cassinellis. With Peter now receiving the right medicine, gone are the voices that are often a hallmark symptom of schizophrenia.
Many families who deal with a loved one's schizophrenia say it is an experience rife with unconditional -- sometimes difficult -- love, as well as plenty of worry, unpredictability and vigilance. "For five years, it never ever occurred to me that it was a 'mental' illness," says Debbie Cassinelli, Peter's mother.
Schizophrenia -- derived from root words meaning "to cut or cleave" and "the mind" -- is a mental illness and brain disease thought to affect between .5 percent to 1.5 percent of U.S. adults. It usually begins gradually during adolescence or young adulthood and is characterized by dulled emotions and distorted thinking.
"I don't know what I thought it was. People said he had separation problems or hallucinations or whatever. Nobody ever said it might be schizophrenia. It just never registered."
Schizophrenia is a rare mental illness and brain disease. It usually begins gradually during adolescence or young adulthood and is characterized by dulled emotions and distorted thinking. Hearing the diagnosis for the first time, Mrs. Cassinelli says, was like entering a dark tunnel in which parental dreams for her son's future seemed to dim in the shadow of the words "schizophrenia."
For any family grappling with schizophrenia, an equally challenging period follows a diagnosis. It's a time of questions, treatments and support groups. Emotional reactions range from anger to worry to guilt. For some, hopes falter and plans change dramatically.
"The most important thing for the family members is to break through the social stigma and temptation to hide the illness and instead admit there is an illness and learn about causes and treatments," says Richard Buck of Montgomery, board chairman of the Hamilton County chapter of the National Alliance for the Mentally Ill.
"Serious mental illness is a tragic happening for any individual and the entire family, but there is hope for recovery."
Adds Peter: "I'm fine with it. It helps now knowing what the voices were."
A major issue
Stigma is perhaps more an issue for a disease like schizophrenia, since much of what the public knows is determined by what appears in the news -- and most of the news is negative or frightening.
A third of homeless people, for example, are thought to be schizophrenic. Unabomber Theodore Kaczynski has schizophrenia. So does 44-year-old Russell Weston Jr., who shot and killed three people at the U.S. Capitol this summer. For several days after the shooting, Mr. Weston's parents spoke poignantly of their frustration and helplessness in dealing with their son's illness.
Typically, distraught families in such cases talk of struggles with their loved one's unpredictable behaviors, inability to convince a schizophrenic family member to continue taking medicines, and not knowing what might happen next.
At times, people with schizophrenia might think God or the devil is talking to them through the radio. They might hear voices, claim to read other people's minds or become obsessed with mathematics, religion or electronic devices.
Mental health advocates, however, point out that most people with schizophrenia typically are not violent or aggressive, especially if they take medicines that control their disease. (An estimated 15 percent, however, commit suicide.)
Some of the newer drugs for schizophrenia, in fact, increase the chances that schizophrenics can lead fairly normal lives. People with schizophrenia, however, are a challenge to the families who take responsibility for their care. Families must learn gradually what treatments work. They struggle with far-ranging issues:
"There are myths and misconceptions about all kinds of mental illness, and a lot about schizophrenia," Debbie says. "I had a friend ask me, 'Is he dangerous?' "
Where a mentally ill adult will live.
- How to manage insurance coverage or pay for what insurance doesn't cover.
What to tell family or friends.
- How to plan for the future.
Relief in knowing why
The Cassinellis are already open about a family history of depression (unrelated to schizophrenia). They are handling Peter's schizophrenia the best they can -- lots of discussion within the family, no shame and always hoping for the best, most effective treatments for their son.
Both Peter and his family feel relieved that they know the cause of his difficulties and behaviors -- the ungrounded suspicions, voices in his head, lapses in judgment, struggles at three different colleges from 1994 to 1997.
"It's easier now," says Peter, a soft-spoken but bright young man who learned in July from a Cincinnati psychiatrist that he has schizophrenia. "My family has been very supportive, just by being there and helping out whenever and however they're needed."
They've welcomed him home with each setback. They've lined up medical care. They've persisted until they found a diagnosis that made sense.
Peter started hearing voices in his head shortly after he graduated from Princeton High School in 1994.
At Butler University in Indianapolis, the voices were judgmental -- usually male -- comparing him to his cousins or other family members, voices that instructed him what to do or not to do, voices that seemed to read strangers' minds.
"It felt like my conscience was checking on me, but I heard it every day," he says.
He returned home after a few months at Butler. At the time, he was taking five medicines that caused a variety of side effects. "I was tired. I didn't have any energy. It was a struggle just to get up every day and do things," he recalls. "We didn't know at the time it was schizophrenia."
Finding the diagnosis was time-consuming and confusing. Over the last five years, in fact, Peter was treated after a variety of other diagnoses -- thought disorder, depression and manic depression -- for which doctors prescribed a changing mix of antidepressants and mood-altering medicines.
Over the next two years, he again tried going back to college, first at Xavier University, then at the University of Dayton. Each time, the symptoms worsened and he returned to Glendale to be closer to his family.
Finding a reason
But when he moved to South Carolina in January to train to be a tennis instructor, the voices started again -- talking to him on the tennis court or outside his window at night.
He came back to Cincinnati in May, was diagnosed with schizophrenia in July and soon began taking a new medicine, Zyprexa. Tiredness is its major side effect.
Zyprexa keeps the voices at bay, allowing him once again to consider a future, perhaps in business, perhaps as a teacher.
Debbie says her initial reaction to Peter's diagnosis has eased, especially as she's seen him make progress -- no more voices, fewer side effects from the drug he's taking, and his own drive to get on with life by talking to career counselors and looking for part-time work.
"It was very difficult at first to come home and say, 'My son is mentally ill,' " Debbie says. "It took us months to say, 'Pete's mentally ill,' just as if it would have been difficult to say, 'Pete has a heart disorder.' "
Overcoming social stigmas about mental illness is not easy. Finding doctors and therapists who can correctly diagnose and treat a problem such as schizophrenia is often time-consuming and confusing. But the Cassinellis finally feel as if they have a handle on what's ahead.
"He's got all the positive signs and a good outlook," his mother says. "We've come a long way, and the more people are open about it, the better it's going to be."
Resources for information, support
Symptoms and treatment of schizophrenia