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Schizophrenia, one family’s story Part III – Deciding to go public

10-14-2006 — By Kathy Perry

Our story is not the stuff of an Academy Award-winning movie, nothing as dramatic as the story of the schizophrenic Nobel Prize winner John Nash, as portrayed by Russell Crowe in “A Beautiful Mind.”

Ours is a story of members of an ordinary family who, like millions of others, live with a relative with schizophrenia. In our case, it is my husband, Herb, who has schizophrenia or, more specifically, schizoaffective disorder, a condition that is a combination of schizophrenia and a mood disorder. Until now, it has been our skeleton in the closet, our secret. We were afraid of becoming shunned and avoided, misunderstood. Would our daughters’ friends still feel comfortable coming to our home? Would people feel awkward with my husband and me in social situations? Our society has become more tolerant of people with mental illness, but are the stigma and fear really gone?

So why tell our story now? I guess we are tired of keeping the secret. And by telling about our experiences, it is hopeful that other families will do the same. Until the cause and cure of this brain illness is discovered, sharing our stories may be the only way the stigma will be lifted.

Herb and Kathy Perry on their wedding day, July 12, 1986.
Courtesy photo

Herb and I met at Phillips Exeter Academy, where we were in the same graduating class. My memories of him from those years are rather vague, but I do recall that as a freshman he was mischievous and energetic. By senior year, I remember him as somewhat quiet and withdrawn. Our relationship began at our fifth class reunion, where we re-met at a party. He was handsome, athletic, witty, sarcastic, rebellious, sensitive and angry, and I fell in love.

Before we were married, I knew that something wasn’t right. Herb was a heavy drinker and frequently smoked marijuana. He spoke obsessively about people who had taunted him in college. He also felt that coworkers at his job and strangers on the streets were harassing him. Monty Python monologues were recited ad nauseam. When I asked his sister what she thought was wrong, she said, “Nobody’s perfect.”

So why did I marry him? He was exciting and interesting. He also had many wonderful qualities, including intelligence, integrity, loyalty, creativity, patience, sensitivity and a fun sense of humor. On our one-year “first date” anniversary, Herb surprised me with a Cracker Jack box that contained a diamond ring in the prize packet. I said, “Yes!”

I had always been scared of people with mental illness. My father had a “nervous breakdown” when I was 12, and it took electric shock therapy and several years of medication for him to return to normal. Working as a young occupational therapy student in psychiatric hospitals, I witnessed the odd behaviors of the chronically mentally ill, such as barking, drooling, mumbling, rocking, twitching and screaming. I saw a nurse barely survive a choking attack by a patient who thought he was a wolf. I also vividly recall hearing a National Public Radio story about schizophrenia, thinking that of all the world’s diseases, I could never live with someone with schizophrenia. Yet, unaware, I married a man with schizophrenia.

Herb, Kathy, Jen and Hannah Perry are shown in Southern Ohio on their way to Indiana University in 1992 weeks before Herb’s illness became acute and he started hearing voices.
Courtesy photo

The most difficult chapter in our story was early in our marriage before Herb was properly diagnosed. As a graduate student at the University of Southern Maine, he became increasingly convinced that the people in our small town were conspiring against him. He let his hair and beard grow long, and was reluctant to leave the house. His face became dull and lifeless, and he drank more. The situation with the townspeople became such a preoccupation, I was almost relieved when we decided to move to Indiana so he could pursue a second master’s degree. Unable to keep a job, being a student was an area in which he excelled. I thought it would be a fresh start.

During his first semester, the disease reached crisis level. Herb carried a tape recorder so that he could capture the voices of people he thought were insulting him in the university hallways. He then took the tape to a private detective and the police. He stopped going to classes. As a young mother with an infant and a preschooler, living in an unfamiliar town far away from my family, I was terrified. Luckily, I worked in a hospital that had an employee assistance program for employees or family members who needed short-term counseling services. As my children cried in their car seats, I found a discreet parking lot telephone booth and, trembling, dialed the program’s number. A few days later, Herb agreed to see a psychiatrist. The day that Herb took his first pill for schizophrenia, I saw life return to his face.

Proper medication and therapy have made life livable for Herb. Most people would never know he suffers from a severe mental disorder. After completing his second graduate degree, he has raised a family, volunteered as a soccer coach, played hockey and baseball, and worked successfully as a journalist.

But the pills and therapy have not been a panacea. Herb continues to struggle with ideas that certain people, often strangers, are purposefully trying to manipulate him. Despite his uncanny ability to question his own thinking process, these ideas are real to him — they are his reality. The greatest tension in our marriage comes from the fact that I do not readily accept his theories. He tries very hard to convince me that he is right. And I can understand how my lack of acceptance would shake his very foundations of sanity. Because if what he perceives to be happening really is not happening, then what is real? I once read in a book that when dealing with someone with schizophrenia, you should always agree with what he or she says. But I just can’t do that.

I am not a very good role model for coping strategies. At the very least, I should be attending therapy or a support group. I should be reading all the latest mental health literature. I should be leading walkathons and magazine drives to support research into the causes and cures of schizophrenia. Until now, I have only told a few people outside of my family. Keeping this secret has been exhausting. I hope this piece will be the beginning of a healthier approach.

So what has kept me in this marriage for 20 years? Perhaps it is because he covers me with the blanket and kisses me on the cheek when I am sleeping. Perhaps it is because he loves our children as fiercely as I do. Perhaps it is because he speaks to our golden retriever in a special soft voice, just for her. Or because he drives carefully to keep us safe, or mows the lawn, or belly laughs at “Seinfeld,” or reads The New Yorker and The Atlantic Monthly, or balances the checkbook, or scores in hockey, or break dances on the floor at the office Christmas party. He is a man first. The diagnosis is secondary.
To be continued…

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Copyright 1999 – 2004 Seacoast Newspapers, a division of Ottaway Newspapers Inc.

Copyright 1999 – 2004 Seacoast Newspapers, a division of Ottaway Newspapers Inc.

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