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Coming Out Of The Shadows
I KNOW A LOT ABOUT MENTAL ILLNESS—BOTH PERSONALLY and professionally—and the two parts of my life are closely intertwined. The personal aspect is that I’m a person with schizophrenia. This part of my life started officially in 1966, when I was twenty-five years old. It was during my fourth year in the U.S. Marine Corps, and I was a guard officer at a naval air station in Florida. I provided security for the installation, which included a large storage area for nuclear weapons. By this point in the mid-1960s, the war in Vietnam was beginning to intensify. I became curious why the U.S. wasn’t winning easily, as we believed we had great superiority, particularly in weapons. After wondering about this puzzling situation for several months, I made what I perceived to be an extremely important discovery: our Asian enemies must, somehow, have developed a powerful psychological weapon that enabled them to brainwash America’s high-ranking officials, including military officers. This, to me, was a fantastic breakthrough, a realization that accounted for our difficulties in Vietnam—as well as some difficulties I was having with my senior officers. Because, in my mind, I’d made a discovery of critical importance for our nation’s war effort, I felt compelled to share my discovery with the person I thought should know the most about brainwashing: the base psychiatrist. When I contacted him, he agreed to see me right away. As our brief talk concluded, much to my surprise, two men in white coats began to escort me into the seclusion room of the base’s psychiatric ward. A short time later, I found that I’d been diagnosed with paranoid schizophrenia. This event marked the beginning for me of a rather interesting lifetime journey.
AFTER MY INITIAL DIAGNOSIS, I SPENT MOST OF THE next five months as a psychiatric patient on the sixteenth floor of the U.S. Naval Hospital in Bethesda, Maryland. There I was given a recently introduced wonder drug called thorazine. After a few weeks, the importance of my "delusion" about the enemy having special influence over the powers that be in this country gradually diminished, and I became less preoccupied with "my discovery." I was discharged from Bethesda Naval Hospital in remission; I don’t remember being told to continue taking thorazine (but this could be faulty memory on my part). I told no one about my schizophrenia. I was able to function well, completing a graduate program in international business, and I got a job as a management trainee in a Fortune 500 company that manufactured heavy construction equipment. Before long, my schizophrenia emerged again—it’s a chronic condition, and episodes tend to occur from time to time. The company was doing increasing business with Japanese customers, and as I’d learned a little of the language during military tours in Japan, I was invited to a dinner with some Japanese visitors. I tried out my awkward Japanese in conversation, but I understood little that was said to me. I knew, however, that people in Japan, and in East Asia generally, tend to be superstitious about the number "four." In Japanese, the word for "four" is shi; it also means "death." East Asians tend to see the number four much as we Westerners view the number thirteen. I didn’t want to offend the Japanese visitors, so I made an effort to avoid the number four. In the process, I managed to say the number "three" quite a bit. The Japanese businessmen seemed to appreciate that I was showing respect for their customs. I quickly became the preferred person to host Japanese visitors, quite an honor for a recently hired management trainee. In my mind, I was receiving this positive attention because I was giving deference to the mystical values of the Orient. It was as though I’d stumbled onto a numeric key for communicating with the people of the East. Then I began to think, don’t we Westerners also have an affinity for the number three? I could look out the window and see a plethora of church steeples, all honoring a holy "trinity." And, isn’t our government divided into three sectors—the legislative, the executive, and the judicial, or maybe the federal, state, and local? Isn’t the U.S. flag the red, white, and blue? Isn’t traffic controlled by red, yellow, and green lights? Don’t we get our news from ABC, CBS, NBC—all of which are combinations of three letters? My mind began to focus on the number three and its possibilities for connecting the values of the East and the West. Clearly I was on to something of immense consequence. It was a Sunday morning, and I decided I’d go to church at the biggest "temple to the trinity" in the city I was visiting, Mil-wau-kee, Wis-con-sin. This, I learned, would likely be the church at Marquette University, on the corner of Wis-con-sin Av-e-nue and Twelfth Street. The hotel was on Seventh and Wis-con-sin, so I started walking up the avenue toward the church. I was so focused on my newfound realization of the importance of the number three that I’d stop when the traffic lights turned red, even though I wasn’t at the corner. Despite my interrupted pace, eventually I made it to the church, where the service had already begun. Initially I sat quietly in a pew near the back, appreciating my newfound awareness of the value and power of the number three. Then I rose and began walking up the aisle toward the priest. At this point, I felt as though some external force had taken control of my movements. I was much less in control than I’d been when I was walking toward the church. Not long after reaching the priest, in my mind, I began to devolve back through evolution. I became like some kind of monkey, then a barking dog or werewolf. Next I turned into a snake, then a one-celled animal. Eventually I felt myself becoming just an atom. In my mind, it was a tritium atom, the isotope of hydrogen with three times hydrogen’s ordinary mass. Indeed, tritium is the hydrogen isotope that’s split to set off a nuclear explosion. Somehow I’d become the instrument to be used to set off the earth’s final nuclear holocaust. I felt myself being put into a large airplane (later I was to understand it had been an ambulance) that was to drop me over Moscow and begin the earth’s nuclear annihilation. When I woke, I was strapped down to a bed in Milwaukee’s public psychiatric hospital. For a short while I believed that I was in some heavenly place and that the world had been destroyed. Before long, the staff must have thought I’d improved, because I found myself discharged into the cold Milwaukee streets. And, very soon, I found that I no longer had a job, and I had nowhere to go. I spent the next decade periodically experiencing other delusions and bouncing in and out of various military, county, state, private, and veterans’ hospitals—mostly involuntarily—in several states. At one point, in Ohio, I was picked up by the police and taken to the Columbus State Hospital, then brought to court. During the hearing, I was apprised by the testifying psychiatrist that my schizophrenia was a degenerative brain disease and that it would become worse with age. I was also told that, in all probability, I would be spending the rest of my life under the care of the state hospital system. I was then judicially declared to be an insane person under the laws of Ohio. Despite the dismal forecasts from professionals about my future, I was eventually discharged.
AS I HADN'T HAD PAID EMPLOYMENT FOR WELL over a year, I was amazed that I was able to find work shortly after leaving the hospital. I got the job in part because a friend was able to pull strings for me, in part because I’d happened to major in psychology in college, and despite having checked "yes" in answer to the question on the application form, "Have you ever been committed?" This is when my role as a professional in the world of mental illness began. My new position at a large state prison consisted of administering psychological tests and writing pre-parole personality evaluations for inmates. My new boss, a well-known psychologist, quickly advised me not to reveal to anyone that I was under treatment for schizophrenia. I decided to carefully comply with his "suggestion." Indeed, I kept my condition a secret during the entire three-year period I worked in the prison. Later, while attending graduate school in psychology at nearby Ohio University, I continued to keep the secret. Amazingly, I was somehow able to do this, even though I experienced two additional psychiatric hospitalizations during my five years as a graduate student. After graduating with a doctorate in psychology, I returned to employment with the state government. This time my job was to perform various psychological and administrative duties at Ohio’s largest psychiatric hospital, located in the Cleveland/Akron area. I quietly apprised my new superiors about my having schizophrenia. Again, I was very strongly advised not to reveal anything about this to others. A few years after starting at this facility, I was promoted to become the hospital’s director of psychology, a job I was able to hang onto for the next fifteen years, despite experiencing several breakdowns. (Many of us with the two "functional psychotic disorders"—schizophrenia and bipolar disorder—are subject to periodic relapses.)
IT WAS ABOUT MIDWAY THROUGH MY TENURE in this position that I began considering the possibility that one reason schizophrenia was thought to be a condition from which people didn’t recover might be because those of us who do recover don’t tell anyone about it. I wasn’t sure how many others like me there might be. Initially I kept these thoughts to myself. But one day in the mid-1980s I was part of a panel at nearby Kent State University addressing a graduate class in psychiatric rehabilitation. When it came time for me to speak, I was standing, probably behind a lectern. Much to my surprise, and for some reason I still don’t fully understand, I began my presentation to the class by saying something like, "I’d like to find out how much you already know about serious mental illness. If there’s anyone in this class who’s ever become so psychotically delusional that you’ve been picked up in the street by the police, taken to a state psychiatric hospital, and declared by a judge to be insane, would you please stand up and identify yourself?" Of course, no one stood up. I proceeded, in dramatic fashion, "Well, I guess I’m the only one in the room standing." My remark was met with deafening silence—it was quiet as outer space must be. No one in the class made a move. Everyone seemed astonished. But no one was as astonished as I was at what I’d just done. And I had no idea what the consequences of my outrageously imprudent act might be. I don’t know why I decided to reveal my long-held secret to the people in the class that day. I certainly didn’t plan it ahead of time, and I immediately became concerned about what might be ahead for me and my family. By this time, I had a wife and four children who depended on me for support.
MY INITIAL REVELATORY STATEMENT AT KENT STATE occurred more than twenty years ago now. Since then I’ve delivered more than a thousand presentations about my recovery from schizophrenia, in virtually every state in the U.S. and in several foreign countries. During this time there have been major changes for those of us with schizophrenia and other serious mental illnesses. Schizophrenia—indeed, virtually all serious mental illnesses—is now viewed as having biological, as well as social, precipitating factors, and treatments have improved substantially. Partly as a result of these improved treatments, most of us are no longer in public psychiatric institutions. The population of those facilities has dropped by more than 90 percent since effective biomedical interventions have been introduced. (Of course, many other psychosocial, legal, and other factors also contributed to the decrease.) On the down side, those of us with these conditions haven’t been able to integrate into the greater society, as was originally hoped. Unemployment rates for the mentally ill run at 80–90 percent. Far too many of the mentally ill have become homeless; the estimate is currently around 150,000 nationally. Twice this number—about 300,000—are thought to be in jails and in prisons. Clearly, early hopes for our social integration haven’t been fulfilled. In large part, our failing to reintegrate can be seen as a consequence of an unchanged mindset in the general community about us. To a significant extent, this is undoubtedly a function of the media images that continue to portray us as bizarre and dangerous. Pejorative terms—"nuts," "wacko," "lunatic," and the like—can be heard far too often in the media, constantly trickling down into everyday conversations. During the past half-century, the enlightened branch of social policies in this country has rightly focused on including traditionally marginalized, neglected, and abandoned groups. But these efforts at inclusion and diversity focus primarily on groups identified by race, gender, and increasingly, gender orientation. Occasionally calls for inclusion talk about the physically disabled, but rarely are the mentally ill included. How can this be changed? How can our society, which for generations has systematically excluded people whose minds sometimes fail to function in a rational manner, be altered in such a way for people with psychiatric disabilities to be able to participate? Other traditionally excluded groups have made significant progress during recent years. But they’ve been able to do this only when members of their groups have been willing to stand up, identify themselves, and point out the exclusionary injustices they face. Those of us with mental illnesses must stop hiding. Our illnesses exist, and they can be treated—just like most other illnesses. Although the vast majority of people with these conditions need to take appropriate medication to minimize the likelihood of relapse, we must, nevertheless, stop being ashamed of who we are. We must demand that others change their long-held views of us. For society to begin changing its exclusionary view of us, we have to do certain things to help our cause. To start with, people with mental illnesses, as a group, must no longer be ashamed of who we are. Although being open about having these conditions is still a problem for people with their careers before them, those of us who are far enough along in our careers—and, therefore, can afford to take the risk of revealing—must no longer hide in the shadows, trying to blend in, pretending that we are not who we are. We must stand up, identify ourselves, and be proud that we have been able to overcome what has been characterized as one of the most devastating of all disabilities. This act of self-identification is especially important for mental health professionals; too often they are willing to perpetuate negative views by concealing their conditions. A number of us did precisely this type of self-identification in the March 2009 issue of Schizophrenia Bulletin. Our article—written by psychologists, psychiatrists, and other mental health professionals with doctorates who are in recovery from schizophrenia—recounted our varying perspectives on our recovery journeys. When we see, hear, or read of ourselves being referred to with pejorative, exclusionary terms ("crazies," "schizos," "nut cases"), we should take issue with the terms. And particularly so when we are disrespected in this manner by mental health professionals. These professionals should be actively working with us for our recovery and for us to be fully included in every aspect of society; they must begin to become advocates for our inclusion as equals in society. Furthermore, government policies directed at care for and dealing with people with psychiatric disabilities should never be constructed, promulgated, or implemented without maximum input from people with these disabilities. It’s impossible to imagine policies being adopted that affect other minority groups where there’s no input from members of these groups, isn’t it? The same is true for us. No longer can we tolerate the mantra "speaking for those who cannot speak for themselves" for the mentally ill. Many of us can speak for ourselves—and, indeed, we are the only ones who truly can. No longer should we be excluded from policy deliberations that affect our well-being. I had an experience recently that illustrates how difficult changing current customs and attitudes might be. I was in a fast-food restaurant and saw a tired-looking, apparently hardworking man who had his "message to the world" on his t-shirt. In bold letters it read: "Better to have loved and lost, than to have had to spend your life with a PSYCHO." The sentiment across his chest reflected what must have been a very difficult relationship for him. I could never have brought myself to take issue with his t-shirt. I even laughed a little. But it was a laugh with deep sadness. Being one of those people labeled "psychos," I’m extremely aware of how difficult life with us is generally perceived to be. But, at the same time, we need to move beyond communicating by t-shirts, bumper stickers, and the like and begin serious conversations.
Fred Frese (fresef{at}admboard.org) is a psychologist with more than forty years’ experience in public mental health care. He is an associate professor of psychology in psychiatry at Northeastern Ohio Universities College of Medicine and coordinator of the Recovery Project of the Alcohol, Drug Addiction, and Mental Health Services Board of Summit County (Ohio), which serves recovering consumers in the Akron area. For fifteen years, until his retirement in 1995, Frese was director of psychology at Western Reserve Psychiatric Hospital. He founded the Community and State Hospital section of the American Psychological Association and is past president of the National Mental Health Consumers’ Association.
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The Secret
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