In the First Person: Voices in His Head
By Herb Perry
Reprinted with permission by Portsmouth Herald Sunday and the Seacoast Media Group
Herb Perry, a newspaper editor in Maine, decided to go public with the personal story of his life with schizophrenia in the hope it will help him and others who live with mental illness. Herb’s article is the first in a series that includes articles by his wife, Kathy, and elder daughter, Jennifer, who have added their voices to what it is like to live with, and love, someone with schizophrenia.
One day in early September 1992, I was walking down a hallway in the Indiana University Student Union when I heard sounds echoing in my head as if I were in a long, deep tunnel. Then I heard a man talking to me, quietly at first, then louder as I walked. The man began to call me names. I looked around, but nobody was looking at me. I became agitated, angry, and confused. What the hell was going on?
I heard the voice a few more times over the next few weeks. Later, I learned the voice was disembodied. He was not real; he was in my head.
I was insane.
Later that month, a psychiatrist diagnosed me with schizophrenia. He prescribed the antipsychotic medication Stelazine. My wife, Kathy, saw me improve that very day. I had been sick for a long time -- suspicious of others, thinking people were following me and casting a wary eye at anyone in proximity.
A few years later, an alert psychiatrist recognized that I also suffered from depression. He added another medication to my regimen, and my diagnosis changed to schizoaffective disorder. Recently, my psychiatrist conferred with doctors at the National Institute of Mental Health. They had rejected me for a schizoaffective disorder study because they thought I fell closer to manic depression on the mental illness continuum.
I really wish they would make up their minds.
Mental illness has plagued me since high school. My brother also lives with schizophrenia, suggesting a genetic link. For many years, my illness limited my abilities in school and work. I also did things other people living with untreated mental illness do: I self-medicated with alcohol and marijuana to treat my illness, which made it worse.
My medications do not work as well as they did when I started using them. From 1998 to 2002, I saw my psychiatrist four times a year. I told him my antipsychotic, Zyprexa [link to fact sheet], made me feel "as normal as I am going to be," and he agreed. I see my current psychiatrist biweekly or monthly because my symptoms have worsened over time. For example, I now experience paranoia almost every day.
"Schizoaffective disorder is characterized by a combination of symptoms of schizophrenia and an affective mood disorder," according to the National Alliance on Mental Illness. "To diagnose schizoaffective disorder, a person needs to have the primary symptoms of schizophrenia (such as delusions, hallucinations, disorganized speech, disorganized behavior) along with a period of time when he or she also has symptoms of major depression or a manic episode." Its Web site says that "unlike normal emotional experiences of sadness, loss or passing mood states, major depression is persistent and can significantly interfere with an individual's thoughts, behavior, mood, activity and physical health."
Two illnesses for the price of one
The media often stereotype people with schizophrenia as crazed people, running amok, endangering themselves and others -- and people believe it. A baseball teammate once told me that a female relative of his was diagnosed with schizophrenia, and that it was very difficult for him. He then said that men who develop schizophrenia become "homicidal maniacs." I didn't correct him. I just shook my head slightly in sadness and resignation. I haven't killed anyone -- and I don't plan on doing so.
Another example: In his first meeting with the staff, a new boss described the absurdity of a person with schizophrenia running for mayor in another city.
"He even has a collection of cans," the boss said, laughing. I was appalled. Shortly afterward, I started collecting cans on my desk until it overflowed with them. Of course, nobody noticed. I laughed quietly to myself.
However, some people have a different take on schizophrenia. In his 2001 book, The Madness of Adam and Eve, the late David Horrobin, a British medical doctor and neuroscientist with an interest in evolution, proposed the radical theory that modern man developed suddenly from our ape ancestors about 100,000 years ago because of the skills and creativity of people with schizophrenia who lead the transformation in all facets of life.
He writes: "Schizophrenia, as well as being associated with mental illness and poor intellectual performance, may also be associated with the opposites." A few individuals living with schizophrenia themselves, but many first-degree relatives (parents, children, siblings), second-degree relatives (aunts, uncles, nieces, nephews, grandparents) or third-degree relatives (first cousins) who share part of the schizophrenic genome, "are some of the highest-achieving and most creative individuals around."
He refers to the "phenomenon of the association between madness and genius," and mentions famous personalities he and others assert either lived with schizophrenia or schizotypal (mild schizophrenia). He lists Ludwig van Beethoven, Richard Wagner, Percy Bysshe Shelley, Edgar Allen Poe, James Joyce, Alfred Lord Tennyson, Albert Einstein, Isaac Newton, Nicolaus Copernicus, Thomas Edison, Charles Darwin, and others.
My struggle with mental illness
Long before I was diagnosed in 1992, I knew something was wrong with me: "I just feel different," I told a therapist. He said my parents' sometimes counterproductive parenting methods caused those feelings. I knew the problem went much deeper than that.
My illness started to impede my ability to learn at about 15 or 16 years old and impaired me through college and beyond. It was difficult to sit down and read my assignments as a student, and learning new concepts became increasingly difficult. I also had difficulty concentrating. I remember first feeling depression at age 17. One Saturday night, I checked into my dormitory feeling pretty low. The teacher on duty noticed my subdued mood and approached me, suspecting I might have been drinking. No doubt, had I been drinking, the instructor -- nicknamed "The Butcher" for expelling eight seniors a few days before graduation -- probably would have tried to expel me. Had he taken a more thoughtful approach and asked me what was wrong, perhaps someone might have recognized the first signs of my illness. Early treatment would have made my condition far better today. But who recognized mental illness in the 1970s, aside from medical professionals?
I also could have used mental health treatment in college. My school was tough. But no one grilled you about the homework assignment or cared if you attended class. Nevertheless, I gave it the old college try my freshman year and received a few good grades, but my academic life went downhill from there.
I felt increasingly depressed, and I tried to treat the condition myself. Feeling down one day a few weeks into my freshman year, I decided to visit a classmate who lived in another dorm and suggested we smoke pot. I had fun the first time I tried it. For several months, smoking marijuana was hilarious. It made me laugh, sometimes uncontrollably. But after a while the habit became self-destructive. I started skipping classes and rarely did my homework. And sometimes when I smoked pot, I experienced psychotic symptoms such as intense paranoia.
Two decades later, my sister sent me a New York Post article that reported the results of three marijuana studies, conducted in England, Holland, and Sweden. They each concluded that "heavy" use of pot increases the risk of developing schizophrenia six to seven times, a correlation, the story said, that goes largely unreported.
At about the same time, an Indianapolis psychiatrist reinforced that idea when he asked me if I still smoked pot. "No," I replied. "Good," he said, "because that stuff will make you crazy." So, ironically, one of the substances I chose to control my symptoms may have worsened them -- and might have triggered my schizophrenia.
Besides not competing academically, I did not compete athletically. I had played three varsity sports in prep school, and I could have played at least one of them at college. Instead, I played JV soccer, only to quit halfway through my second season.
I guzzled several 25-cent beers daily at my frat house and usually woke up with a hangover. I treated the hangover by smoking marijuana. Smoking pot made me thirsty. So I drank beer. A vicious cycle.
I missed more than 50 percent of my classes in college, and one semester I attended only 30 percent. For three years, I somehow maintained a C average but nose-dived senior year. I stopped studying, failed two courses, and the school expelled me for poor academic performance a week after I should have graduated.
I moved to Boston that summer and enrolled in two courses at Harvard Extension School to try to regain admission to my college. I worked hard, received an A- and a B+, and found myself at my old college, where I fell back into old habits. I graduated in May 1981 only through help from my government department adviser, who persuaded my reluctant chemistry teacher to pass me. He gave me a D-.
I moved to my mother's New Jersey home (where I grew up) and eventually landed across the river in New York City. I had many short-lasting jobs: cab driver, bicycle messenger, paralegal, courier driver, insurance salesman, security supervisor, and van driver.
In 1986, I married a classmate, Kathy Bowman, and we moved to Maine. I still drank heavily and smoked pot. I would interject lengthy monologues of Monty Python dialogue during our conversations. Kathy began to wonder about me. I sold cars for a while, made some money, but was fired for denting the roof of a new Subaru by trying to hurdle it.
In 1987, I applied to law school. I scored fairly high on the Law School Admission Test, but my poor college grades doomed my application. My illness continued to worsen. I felt even more paranoid and became convinced that people sometimes followed me. Maybe they did. Kathy did not think so. She encouraged me to get therapy, but my therapist failed to recognize my illness.
In September 1987, I enrolled in graduate school. Despite my worsening depression and paranoia, I could finally concentrate. Why? I don't know. Perhaps the caffeine from the four or five cups of coffee I drank daily had some effect.
I did well in most courses, especially in town planning and the public speaking class. In fact, my public speaking professor told me I was the best student he ever had. A small victory.
I worked as a graduate assistant during my first year of study. The next year, I commuted to Augusta to work as a part-time contractor for the Maine Legislature's Office of Policy and Legal Analysis. I testified before the Transportation Committee about a study I had conducted. My boss said I did "an excellent job." I graduated in May 1991 into a bad economy and no job prospects. What would I do now? Well, I would continue to drink. In August, I cut off a police officer after downing eight beers. The officer was not pleased. I attended mandatory counseling and stopped drinking. I also stopped smoking pot. Too little, too late.
In September 1992, I started studying at the Indiana University School of Journalism, where my illness became acute and I heard that voice. Only after a psychiatrist prescribed Stelazine for me did I understand that I was ill.
Navigating through life with mental illness
I know I act strangely at times -- I wonder how strange -- but most people who meet me do not know I am ill. However, after a while, some people start to notice. Some accept my "shortcomings." Others, I think, find me humorous or even an object of derision. I think some people mess with my head just for the fun of it. Some people infer motives for my behavior without enough information, and some might think they know what's better for me than I know myself.
I suspect people try to hamper me, even though I have done nothing wrong. I also think people gossip about me, perhaps prompted by my sometimes odd behavior. My paranoia spikes at work and in the gym, and when I look with suspicion at someone I think has crossed me, I suspect that person tells others and that they begin to watch me. And my paranoia becomes a self-fulfilling prophecy. Or is that just a delusion? I just don't know.
People often misunderstand me. For instance, at one job I heard a co-worker call someone a "weirdo," and I thought she was describing me. I stared at her and she noticed me doing so. Unfortunately, she misinterpreted my actions, thereafter declaring often and loudly my romantic interest in her. It got to the point where I had to tilt my head down and strain to look upward to still see my computer screen but not look above it. This "torture" continued for months.
Staring at people is another manifestation of my illness. I know staring makes some uncomfortable. I just don't always know I am doing it.
I can become anxious and paranoid when others focus -- or I think focus -- on me. But a group of people, perhaps well-meaning, perhaps not, can make me feel worse. Though my wife and my therapist would disagree, I do think groups of people have tried to modify my behavior.
Yes, I know. Typical paranoid thinking. When I am sick, anything I perceive as a conspiracy intensifies my underlying paranoia. I begin to obsess about what people are "doing" to me. I feel that I am being mentally tortured.
Kathy routinely dismisses any claim I make that people conspire against me (wouldn't you?). My attempts to convince her have made her cry, and my inability to make her believe me angers and frustrates me. But it's just not her: "I'm sure it's real to you," a local National Alliance on Mental Illness leader replied after I described to her one of my "conspiracy theories." I replied: "It's not relatively real; it's absolutely real."
How does paranoia work?
Even when I'm sick, I can converse with anyone in a one-on-one conversation, but background conversations become problematic. At work I do my job with one ear toward the multiplicity of conversations occurring in the newsroom and beyond. When I am sick, those conversations become conversations about me, though I know intellectually there is a good chance they are not. The phenomenon is called "ideas of reference." I begin to translate images, words, and actions into a scenario that fits my paranoid vision.
My tendency to link seemingly disparate things can be positive -- I sometimes see connections before others do and sometimes understand a speaker's point several sentences before he or she gets there. But it also contributes to my illness. In early August, when I was on a too-low dose of Zyprexa, I asked the publisher if anyone had complained to him about my staring. He said no. The next day, sitting at my desk, I heard someone say from about 25 yards away something like, "Yes, it does and I'm going to sue." And then I heard laughter. I thought that someone had revealed details of my conversation with the publisher to others and two of these people were making fun of me.
Were these people talking about me? I don't know. Did someone actually have this conversation? I don't know. When I am sick, my paranoia overwhelms my sense of logic and inclination to question my assumptions. I feel exposed and picked on. When I feel healthy, logic and skepticism rule my thinking process.
When I am ill, I will interpret the way people look at me. If a person looks at me in a surprising or unusual way, I become concerned. If another person does the same thing -- or something else that piques my interest -- I can obsess over what people are saying about or doing to me.
One day at the gym in early September, a man looked at me, sat on an exercise machine, pulled out a cell phone, called somebody up and started talking. "That person did look at me," I told myself, "but it doesn't really matter." I could see through the mirror that he looked at me several times while he talked. But I was healthy that day. I didn't care.
But the looks and words of others have made me feel threatened at the gym in the last two months. I started practicing tae kwon do again, after a 23-year hiatus. I studied the martial art when I lived in the New York metropolis because I justifiably felt unsafe on the subway and on some streets. Am I facing a dangerous situation now? Or am I deluded? I question myself because people important to me consider my claims of persecution (or behavior modification) to be delusional.
It can be exhausting trying to perceive reality when you don't trust your senses. I often wonder what reality is. One of my supervisors made that point to me when I talked to him in early September. A person doesn't have to have a mental illness to wonder about his or her take on reality, he said. I agree. I saw a Japanese movie in class at Indiana University that emphasized the point. Set in feudal Japan, several people witnessed the same criminal act, yet when asked about it later, each offered a different recollection about what happened. I think that happens in real life, too.
Contradictory evidence of my sanity
And yet I do well in real life. As a full-time reporter, I wrote about 1,000 newspaper stories. Of those 1,000 stories, I had to write just two corrections to clarify errors that I made.
So am I really that crazy? I would like to know.
Certainly, hearing the voice of someone who is not there is crazy. Luckily, the voice in my head never told me to do anything bad or dangerous, and I've only heard him twice in the last 14 years. I last heard him in April 2002 when my psychiatrist unsuccessfully switched my antipsychotic medication. I traveled to Montreal one weekend to play in a hockey tournament and came back delusional.
I couldn't work for a week and thought I would lose my job. Luckily, my supervisors treated me with understanding, compassion, and respect. I really appreciate that. They emphasized the biological nature of my illness when others -- most publicly Tom Cruise -- assert that mental illness reflects a character fault or a lack of will. (What an ass.)
Unfortunately, my illness often causes me to be self-absorbed, which limits my role as a father and a husband. I feel badly about that. I should pay closer attention to the lives of my wife and my daughters. I think I do a fairly good job now. I ask my daughters about school, their friends, their ambitions, their hobbies. And I talk with Kathy about her work and her interests. But I could do more. We all get distracted; unfortunately, my distractions sometimes become obsessions.
Also, three or four times a year, I become so ill at work that I have to go home. I leave people in a lurch when I do. I'm sorry about that, too.
Then again, maybe I have manic depression. Manic depression -- also called bipolar disorder -- is a psychotic disorder characterized by alternating periods of mania and mental depression. Horrobin writes: "As many as 30-60 percent of creative writers may be seriously ill with bipolar disorder. This is dramatically greater than the 1 percent or so of the general population who have the illness." So I'm not alone. Maybe we can play Monty Python's "spot the loony" in the newsroom.
My psychiatrist prescribed Lamictal last summer to treat the manic depression. I know I have exhibited periods of high energy when I am eager to meet new people, not afraid of crowds, and I exercise at the gym and play hockey five or six times a week. And I have lived through lows when I isolate myself, stop exercising and seldom speak. During one low period in 2004, I stopped playing hockey in the middle of the season even though I love the game.
At that time, my psychiatrist asked my wife to accompany me to an appointment. He asked her how I was doing. She replied, "He is just fading away." He prescribed Adderall for me, a drug used to treat attention deficit disorder in children. I regained my energy, but I feel uneasy about taking so many medications.
I recently switched back to Zyprexa because my previous antipsychotic may have caused the early onset of tardive dyskinesia, a condition that causes uncontrollable body movements. When I first used Zyprexa, I gained 30 pounds and had trouble arising each morning. It can also cause diabetes. It's not working as well as it did before -- my glucose level is above normal, but I'm not gaining the weight I did before.
Other drugs I take also have side effects. Lamictal can cause "deadly rashes" ("What the hell does that mean?" I asked my doctor). I also take Temazepam to sleep, Ativan occasionally for anxiety, and Wellbutrin XL for depression. It works well.
We have high medical costs, but thankfully we have insurance. I'm not sure how I would survive otherwise.
People more readily accept mental illness now. But others still try to manipulate people's fear of it to their advantage. Take the case of my family's 2003 car accident. One evening in mid-November, a distracted 16-year-old boy failed to see Kathy's van -- stopped, with brake lights on and left directional flashing -- and smashed into it at 55 mph with his pickup truck. Kathy suffered a head injury that forced her to leave her occupational therapy. My older daughter, Jennifer, suffered a temporary head injury and a permanent back injury. And my younger daughter, Hannah, suffered a temporary head injury. The accident changed our lives. Open and shut case, right?
When the boy's attorney heard that I lived with a mental illness, he tried to blame Kathy's head injury on my condition, as far-fetched as that sounds -- I wasn't even in the car! I became sick for several months, fearfully obsessing about the prospect of that attorney cross-examining me about my illness in court. Horrobin states that between 10 and 20 percent of all people with schizophrenia commit suicide when they are ill. For a day or two, I considered suicide until anger welled up in me and I began to anticipate the encounter. The case never went to trial.
The good news
Until now, I have painted a picture of woe; but actually, life is pretty good. Both of my girls are high honor students. Jennifer is now in college. Both treat me with patience and understanding. Kathy has recovered from the car accident. She has returned to occupational therapy, and I expect our finances will finally improve.
Despite my illness, I earned a second master's degree -- in journalism with high grades -- from Indiana University. And, after years of under- or unemployment, I began a successful journalism career, earning 12 news and feature writing awards in four years as a reporter and serving in several roles as an editor. Despite the resurgence of my illness, the copy desk chief recently praised my editing, and the executive editor said I'm doing "a great job" as a page designer.
My medications work most of the time, and I don't hear voices (though I could use the occasional stock tip). The people who know me like me. I still play hockey, and I try to help other people living with mental illness by serving on the board of directors of Counseling Services Inc., a Maine organization dedicated to helping people with mental illnesses. And, sometimes, I can get outside my head and think about more important things than my phobias.
Going public with my story feels great. I hope it will educate some and give voice to others affected by mental illness. And perhaps my story provides some insight into why I, and people like me, do the things we do.
To read the rest of this series, including articles by Herb’s wife and daughter, visit the Portsmouth Herald Web site.