We continually try to understand the nature of the illness Travis was suffering with – it was so unfamiliar to us, having never known anything about it, and just trying to fit pieces of behavior, conversation & observation together. I recently found this article and it helps me get into what I think might have been Travis’s world and understand him a bit more – maybe it will be helpful to someone else that is trying to work through this as well. – Claudia, Travis’s Mom, still missing him . . .
Schizophrenia -- it's a big, scary word that is often misunderstood.
By definition, schizophrenics hear voices, are delusional, paranoid or antisocial. Some people confuse it with a multiple personality disorder, which it is not. Proper diagnosis and treatment with medication and therapy, along with a social or family support network, help many people with schizophrenia lead what would be perceived to be "normal" productive lives.
Herb Perry, a copy editor here at Seacoast Media Group (publisher of Herald Sunday), has decided to go public with the personal story of his life with schizophrenia in the hope it will help him and others who suffer in silence. His wife, Kathy, and elder daughter, Jennifer, have added their voices to what it is like to live with, and love, someone with schizophrenia.
It's frightening because the idea of not being in control of one's mind -- thoughts, feelings and sense of reality -- is terrifying.
We hope their stories can help lift the veil of secrecy, shame and ignorance that for many can be as hard to live with as the disease itself.
· Voices in his head -- Herb Perry writes about his long struggle with schizophrenia, which he first recognized when he heard a voice talking to him and no one was there.
· Skeletons in the closet -- Kathy Perry writes about the love she shares with her husband, and her desire to be done with the "secrets."
· A different kind of daddy -- Daughter Jennifer Perry says she always knew there was "something different" about her
· Schizophrenia explained -- Reporter Rachel Collins discusses the disease with leading psychiatric experts.
In the First
Person: Voices in His Head
October 2006 By Herb Perry
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, 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 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.
Deciding to go public
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.
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.
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.
A different kind of daddy By Jennifer Perry
The room was almost painfully white. Everything from the bleached cement blocks of the wall to the excessively shined tiles of the floor gave off the impression of uneasiness, even vulnerability. On the opposite side of the room was a large glass window. My mom squeezed my hand tightly as we approached the window, which on the other side sat my father. He had been arrested for drunken driving. I was 3 years old.
As my mom tucked me into bed later that night, I recall asking curiously why my father had been sitting in that little white room all by himself.
"Because he wasn't very happy."
I remember thinking it was a very unusual way to respond to unhappiness. But at that point, I didn't know how unusual it actually was.
Herb and Jennifer
play catch at their home in Saco, Maine, in 1987.
I'm only really learning about it now. For some years I've known that my father has had schizoaffective disorder, but from the moment my mom told me, it was only just a name -- one that was supposed to clarify why he wouldn't talk to the other parents at school functions, or why when every time he spoke to me he always sort of glared, or why my friends thought he was always mad at them "¦ why I thought he was always mad at me.
Online medical Web sites address schizoaffective disorder with a strict, complicated definition: "An uninterrupted period of illness during which, at some time, there is either a major depressive episode, a manic episode, or a mixed episode, concurrent with symptoms of schizophrenia, all in the same 2 week period."
Well, I have never marked off the 14 days on a calendar, and I have never categorized my father's life as a series of episodes. To me, he's just always seemed different "¦ the kind of different that has been, yes, frustrating for the typical adolescent who's focused on appearances and others' opinions. I never really understood why he couldn't laugh and joke around with my friends like I had seen other fathers do. His behavior in social situations always angered me, as, up until now, my ignorance told me he was just not interested in trying.
There have been multiple times in recent years when I have come home in tears from whichever teenage conflict had occurred that day. Each time this would happen, I would race toward the stairs in order to reach the seclusion of my bedroom as quickly as I could. I would often, however, be stopped by my father who was sitting at his usual place at the dining room table. He would immediately start lecturing me about keeping my proof of car insurance in my wallet, or reviewing my bank statements as soon as possible, or getting in shape before soccer tryouts. I'd always get exasperated and blow up at him at this point, as I didn't comprehend why he couldn't realize that I was upset and couldn't take that into consideration. I know now that he sometimes has almost a tainted view of reality. That is, in this case, he has difficulty reading other people's emotions, as he often either over or under exaggerates them.
It's hard to pinpoint the exact moment I became analytically aware of my father's oddities. As a child, he was my best friend, someone who would stick an oversized baseball glove on my tiny hand and play catch with me for hours (the fact that I was a girl, of course, didn't make a difference). I suppose my innocence and blissful ignorance allowed me to view him as just my "daddy," someone who couldn't have negatives if he tried. Since then, though, the relationship between my father and me has been considerably strained, especially during my adolescent years. However, I would be lying if I claimed it was one-sided. We habitually clash because, in a sense, we are one and the same. I admit that I often share his short temper, his obstinacy, his sensitivity and his constant anxiety. Not to mention, we are both pretty feisty. So, as I learn about him, I also learn about myself. I've discovered what choices I need to make for myself in order to stay healthy. I suppose I have learned an alternate "hard way" about the effects of marijuana.
As a recent high school graduate, I have been given countless opportunities to smoke pot, yet I have never tried, never even considered it. In this way, I feel luckier than others. I have already gained the maturity to know in one way what's best for me and the intelligence to learn from his mistakes. And I know that that's what my dad wants, what he's grateful for.
It's been about 15 years since my father sat in that little white room. And although his disorder has made life difficult since then, he has achieved things that would be considered impressive for any human being. And even though these 15 years have been hard on me, I would never determine that the difficulties take precedence over the fact that I love him dearly and he loves me.
And I've finally started to gain the necessary acceptance to improve our relationship. I've known him, yes, as my odd father with the disorder I was forbidden to talk about. But more importantly, I've known him as the one who played "monster" with my sister and me when we were young, the one who taught me to kick a soccer ball with both my right and left feet, the one who kisses all of our sleeping heads before he goes to work "¦ the one who just dropped me off at college with tears in his eyes. And, all frustrations aside, I'm proud of him.
Schizophrenia symptoms include hallucinations and delusions
About 1 percent of the population -- some 3 million plus in the United States and hundreds of millions in the world -- will be diagnosed with schizophrenia at some point in their lifetime.
That means that though the chronic, severe and disabling brain disorder is not as common as diabetes or hypertension, it is more widespread than many illnesses -- including multiple sclerosis and ALS (amyotrophic lateral sclerosis or Lou Gehrig's disease), said Dr. Dost Ongur, medical director of the Schizophrenia and Bipolar Disorder Program at McLean Hospital in Belmont, Mass. McLean, which is affiliated with Harvard Medical School, is ranked one of the nation's top hospitals for mental health care and research.
And though it is most likely to be diagnosed in late adolescence or early adulthood -- "at a time when someone is leaving for college or getting their first job" -- it is a lifelong illness "so most of the people with schizophrenia are in their 30s, 40s and 50s," he said.
People with schizophrenia may hear voices others don't or they may believe others are reading their minds, controlling their thoughts or plotting to harm them.
Since these experiences are terrifying, they cause fearfulness, withdrawal or extreme agitation, according to experts at the National Institute of Mental Health in Bethesda, Md.
Those with schizophrenia also may not make sense to someone else when they talk or they may sit for hours without moving or talking much. They are not especially prone to violence, often preferring to be left alone.
For many, schizophrenia begins with something called a "prodromal" period when a person becomes more anxious or depressed, withdraws from friends, has sleep problems, becomes irritable and often makes odd comments, Ongur said.
This period can last anywhere from six months to two years before the onset of schizophrenia's first psychotic symptoms such as hallucinations and delusions. Still, there are some for whom the symptoms will appear with an abrupt onset of hallucinations and delusions.
With hallucinations, a person will see, hear, smell or feel something that no one else is experiencing. Delusions are false personal beliefs that aren't part of the person's culture and won't change even when other people present proof they aren't logical.
"They might tell us things like aliens are coming to see them or people have been experimenting on them," Ongur said.
These psychotic symptoms usually emerge in men in their late teens and early 20s and in women in their mid-20s to early 30s. They seldom occur after age 45 and only rarely before puberty, according to NIMH statistics.
Schizophrenia is believed to result from a combination of environmental and genetic factors.
For instance, scientists have long known that though schizophrenia occurs in 1 percent of the general population, 10 percent of people with a first-degree relative -- parent, brother or sister -- will be diagnosed with the disorder. People who have second-degree relatives with the disorder -- aunts, uncles, grandparents or cousins -- also develop schizophrenia more often than the general population.
Still, there is no definitive test that can be used to diagnose schizophrenia or predict the likelihood someone will develop the disorder, Ongur said.
Currently, schizophrenia is a clinical diagnosis made after a psychiatrist talks with a patient and his or her family, he said.
"There's hope that the research will lead to developing either a brain-imaging or blood test" that will diagnose a patient who has schizophrenia, Ongur said. "But we're really not there yet -- that's probably decades away."
Once a patient is diagnosed with schizophrenia, "a very important part of their treatment" is medication, said Dr. Ted Drummond, associate medical director of the Seacoast Mental Health Center with offices in Portsmouth and Exeter.
Yet, both Drummond and Ongur said overwhelming evidence has shown that the best comprehensive treatment approach includes not only antipsychotic medications, but therapy and vocational rehabilitation so the patient either can be trained to do something productive with his or her time or function more effectively in the community.
"Most people with treatment are able to lead a satisfying and meaningful life," Drummond said. "Many are able to work -- some full time, some part time. Many are able to establish positive and meaningful lives with families, work, their churches and their communities."
Across the board, it is helpful to have a support system, which might include family members, a job counselor and medical professionals, Drummond said.
In Portsmouth, the Consumer Alliance on Islington Street also offers those with schizophrenia a resource for socialization, group activities and educational support, Drummond said.
In addition to a psychiatrist, Drummond said, someone with schizophrenia may do well to work with a therapist, a case manager and vocational counselor.
"A case manager helps with the practical aspects of managing life," Drummond said. "They pull it all together." When needed, they are able to assist with everything from grocery shopping and applying for benefits like food stamps to transportation and household management.
"It really depends, if you're getting really good care, many (with schizophrenia) will do very well," Ongur said. "Many work and can live independently. Unfortunately, though, it's a lifelong illness and many of our patients don't have jobs and don't have families. The disease really robs them of many of those opportunities."
Certainly, those with schizophrenia don't do as well when they abuse substances like drugs and/or alcohol, since that makes it more likely they will not follow their treatment plan, Ongur said.
"About half of the patients struggle with the idea that they have (a) mental illness and they try to avoid working with treaters," he said. "Patients off treatments who get involved with substance abuse will get more acutely ill."
In fact, research has shown that not getting treatment, thus allowing more "toxic events" in the brain, will damage brain tissue.
"If someone starts treatment early on and stays on the treatment, there is emerging evidence that it keeps the brain healthier and it makes things better for the patient," Ongur said. "You're actually preserving brain tissue if you're on treatment."
And, though most people with schizophrenia do not commit violent crimes -- and most violent crimes are not committed by people with schizophrenia -- The New York Times recently published a story about a prominent schizophrenia specialist, Dr. Wayne S. Fenton, who was beaten to death in his suburban Washington, D.C., office by a 19-year-old, severely psychotic patient he was meeting for a weekend session. Fenton, an associate director at the NIMH, was trying to persuade his patient to take his medications.
Ongur, for one, cautioned that news such as Fenton's death does a serious disservice to most people with schizophrenia who are not prone to violence.
"Dr. Fenton was a great advocate for those with schizophrenia," Ongur said. "The one thing he would have hated was people being afraid of schizophrenics. Most patients need help -- it is not fear or distance that they need."
Posted by Claudia as a reply to the SZ Article in the Herald Sunday – October 2006
It is so important to understand this illness, if for no
other reason, just incase someone you know develops symptoms. In 2005, our 18
year old son - youngest of 3 boys, started exhibiting unusual behavior,
basically lost his personality, and became delusional, anxious & paranoid,
couldn't concentrate or sleep - we had never known anything about SZ, or
Bi-Polar Disorder, and from what I read now, I think he had both. We could
never convince him to get medical help, and he didn't understand what was
happening to him as well, but in March of 2006, at the age of 19, he ended his
life. All his symptoms (that we were journaling and sending to a medical
doctor), putting the pieces together, now all too late, point to this
Family love and support are NOT enough. If anyone ever had a strong family support system, and was loved and cared for greatly, by his parents and brothers, and many other extended family members, it was our son, but that did not save his life, or protect him from the horrors associated with this illness - for him or his loved ones. It is a brave move for the Perry's to put their story out there, to help those with this illness be understood, or for those that are trying to put pieces of the picture together to find help and diagnosis for someone they love. The stigma needs to be removed - no one with this illness caused it by their behavior, I understand that pot can activate it sooner possibly, but not cause it. As I understand, the pot use is usually to self-medicate in the early stages when the person is trying to feel normal.
One other thing that needs to be worked out, are the privacy issues/policies. When my son became 18, we had no ability to get treatment for him unless he was exhibiting behavior that was harmful to himself or others - a person with this illness does not recognize they are sick, and those that are close to them (parents, brother, other relatives or friends) should be able to get help for them especially if they don't realize they need it. We live in a frustrating world. When our son was exhibiting signs of harmful behavior, observed by the police and ambulance personnel, and when we were called (2,000 miles away) we begged them to get him evaluation, the emergency room doctors refused to let them transport him, 4 days later he ended his life.