The following is a story published about Dr. Fred Frese, an amazing individual who also happens to suffer from schizophrenia. Dr. Frese is a member of the Board of Directors of the Treatment Advocacy Center.
Frederick Frese’s astonishing story is simply this: Thirty years ago, he was locked up in an Ohio mental hospital, dazed and delusional, with paranoid schizophrenia. Twelve years later, he had become [a] chief psychologist for the very mental hospital system that had confined him.
Along the way, despite 10 other hospitalizations, he married, had four children and earned a master’s degree and doctorate.
He’s smart, impassioned and dedicated.
And now, after more than 300 public appearances in the last few years and a major role in a national campaign to end discrimination against the mentally ill, Frese is gaining prominence as a person who lives successfully with schizophrenia and who can share the lessons he and his family have learned from it.
Frese’s accomplishments are remarkable by anyone’s standards, given the often devastating nature of the disorder, which affects 2.5 million Americans. A fact sheet on schizophrenia from the National Institute of Mental Health calls it the most chronic and disabling of the major mental illnesses.
Afraid, withdrawn and tortured by inner thoughts and voices, people with schizophrenia, particularly those who refuse to take medication, are more prone to suicide or estrangement from society. Once locked inside mental hospitals, as Frese was, they now make up a significant portion of the homeless population; many others are in jail.
But Frese, 55, of Hudson, Ohio, between Cleveland and Akron, contends he’s not all that unusual — many others with schizophrenia lead fulfilling lives.
It’s a message that encourages people who hear him. In May, he received a standing ovation from 600 Detroit residents who heard his speech to Kadima, a group that offers innovative programs to mentally ill people and their families.
Frese shows that “schizophrenia need not be the end of life,” says Dr. Husseini Manji, director of schizophrenia and mood disorders at the Wayne State University School of Medicine and the Detroit Receiving Hospital. He spoke with Frese at the Detroit event.
Laurie Flynn, executive director of the National Alliance for the Mentally Ill, a Washington, D.C.-area support and advocacy group, says, “Fred embodies the hope we all have for … the recovery of our family members.” Frese serves on the group’s board of directors.
“His talent, intellect, complete openness and humor have made it possible for a lot of people to believe it’s possible to follow in his footsteps,” Flynn says.
When Frese had his first breakdown, he was 25, a college graduate and a Marine Corps captain guarding atomic weapons in Jacksonville, Fla.
He developed an all-consuming paranoia that enemy nations, in a plot to take over the U.S. atomic weapons supply, had hypnotized American leaders.
The base’s psychiatrist had Frese taken to a Bethesda, Md., naval hospital. He was discharged five months later, not knowing what he really had or whether he should take any medicine.
But Frese had several classic symptoms, notably his inability to separate fantasy from reality and his hearing of inner voices. Contrary to popular belief, schizophrenia is not a split personality. Rather, people are apathetic, withdrawn, delusional and can’t think logically. Though people are more likely to develop schizophrenia if it runs in their family, substance abuse, stress and other factors may trigger it. It typically develops between the ages of 17 and 25.
New research shows that viral infections in the second trimester of pregnancy also may cause the disease, though it may not develop for years.
Frese’s second breakdown came about a year later in a Milwaukee church. He pictured himself changing from man to monkey, then dog, snake, fish and, finally, an atom.
He saw himself inside an atom bomb being loaded for use. He thought he was “the instrument to usher in Armageddon.” He was hospitalized for a few weeks, then released. He wandered streets for the next year. In the summer of 1968, when he was 27, he was picked up, jailed, taken to court and declared insane by the state of Ohio. He spent three days in a maximum-security mental hospital cell.
The story he tells of that stay depicts him at utter rock bottom, screaming for water, trapped in a room with no toilet, guarded by attendants who wouldn’t let him out to go to the bathroom.
Then, transferred to a Veterans Administration hospital, Frese was put on a medicine that began to control his delusions. Over time, though he was in and out of the hospital 10 times, he was able to hold jobs, including a management position with a major corporation. He earned a degree in international business management from the American Graduate School of International Management in Phoenix, Ariz., and a master’s degree and doctorate in psychology from Ohio University. For 15 years, he served as director of psychology for the Western Reserve Psychiatric Hospital in Sagamore Hills, Ohio, the system where he had once been a patient.
Frese benefited from luck, persistence, his college degrees and health insurance at the time of his first breakdown. In addition, he recovers more quickly once he’s on medicine.
Once, he was hired into a management position at a major corporation without even being asked for his health history. Another time, an administrator recommended him for a job over the objections of people who questioned whether someone with psychiatric problems should work in the mental-health system. Discrimination like that remains a serious problem for mentally ill people even today; as a result, many can get only menial jobs.
At Ohio University, Frese met his wife, Penny, a former nun, while they were both graduate students.
In “A Love Story: Living with Someone with Schizoprehenia,” the last half of a two-part video she produced with her husband, Penny Frese describes how her husband confided in her about his mental illness only after they had been friends for a while. Curious about the disease, she devoured books on the subject and spent hours talking to Frese about his illness.
He opened up his life to her. She saw a man who was charming, funny and intelligent. They became close, but her growing affection for him scared her. She left for Colorado, but soon realized her life held little without him. “Life without him was unthinkable, but I was terrified,” she explains in the video.
They married and had three children. Frese has a fourth child from a previous brief marriage.
All four children, now ages 15 to 24, have been diagnosed with depression and take drugs for the conditions. Frese had a cousin with schizophrenia, offering more evidence of a genetic link.
“They are all doing wonderfully,” Penny Frese says of their children. A son, so painfully shy in middle school that he sat in the principal’s office to avoid gym, just graduated seventh in a class of 400. He was a class officer and a drama student. “He’s extraordinarily popular,” she says of her college-bound son.
Claire Frese, 16, has produced her own video called “My Story” to describe her last five years of coping with depression.
Most children with depression can be treated successfully with medication, Penny Frese says. “The disturbing thing is, I see lots of children like my children who are not getting help,” she says.
Penny Frese, who has a doctorate in comparative arts and who teaches theater at Kent State University, urges parents to get help for children who are withdrawn, usually shy, hypersensitive, or who have sleep or eating problems.
Claire’s own friends and school officials are a big help, now that the family has been open about the problem, she says. “They are pleased to help,” she says. On a recent class trip, a friend noticed that Claire was becoming stressed. He went over to her and asked her to walk with him for a while.
“He said, `Hey, bud, I guess you need a hug’,” Penny Frese recalls. “We underestimate people’s ability to understand.” Thirty years of life with schizophrenia have taught Frese and his family to cope.
“As you get older, you are better able to spot the symptoms and to cut them off,” says Frese. He was hospitalized in 1974 and suffered a severe enough relapse 1 1/2 years ago that he was almost hospitalized again. First, Frese says, a person with a serious mental illness must acknowledge his or her disability and take medication.
Denial is common, particularly at first, because “you don’t think it through very carefully,” he says. “You just hope it goes away.” Employers, friends and neighbors also usually attach such strong stigmas to mental illness that many people pay a price if they tell others, Frese says.
Frese explains the disease as an “inherited vulnerability to breakdown” exacerbated by stress, conflict, substance abuse, death or other losses. When he feels his own symptoms worsening, he increases the dose of Risperdal, the schizophrenia drug he takes.
He also may take off time from work or remove himself from a stressful situation. For particularly sticky situations he can’t avoid, Frese carries a wallet-size card that he hands to people if it becomes necessary. It asks them to rephrase criticism in a less threatening manner because he is a mentally ill person who doesn’t handle conflict well.
Criticism, even perceived criticism, can be paralyzing, he explains. Studies show that people with schizophrenia who are discharged from hospitals are more likely to relapse if they go home to family members who criticize them, he says. So, too, are patients discharged from hospital psychiatric wards that are run with excess control and rules, he says.
He suggests that people with schizophrenia “avoid persons, places and hostile environments where they are likely to be stressed.” He tells family members not to agitate people with schizophrenia if they begin talking about subjects or delusions that seem odd. Instead, say: “That’s very interesting. Tell me more.”
Frese’s wife says she, too, has learned more about how to communicate with her husband. She no longer is bothered if he won’t establish direct eye contact with her. She understands that people with schizophrenia have trouble picking up on social cues, so they have trouble ending a conversation appropriately or even sustaining one. She also avoids statements that might be interpreted as accusations. It’s better to say,”Are those your socks on the floor?” than “You left your socks on the floor again,” she says.
These days, Fred Frese directs the Summit County (Ohio) Recovery Project, a program to help mentally ill people find jobs and fight discrimination.
He also is active in the Campaign to End Discrimination, a new five-year effort by the National Alliance for the Mentally Ill.
Started in February, it hopes to eliminate discrimination against the mentally ill in housing, employment and the media. A major goal of the campaign is to get Congress to pass laws requiring insurance plans to cover mental illness as fully as other medical problems. Though the Senate and House still must resolve differences, a bill recently got a big boost from three U.S. senators who have given moving personal testimony in its favor, based on their experiences with mentally ill family members.
“These are times of change for us,” Frese tells the Detroit group.
“As I often say, in my 30 years with schizophrenia, there’s never been a better time to be a person with serious mental illness. There’s more hope than ever before.”
