First Break: Where Do I Go From Here?, 1990s, by Daniel Frey
From MemoryArchive
Who: Daniel Frey What: Mental Illness When: 1990s Where: New York, New York
I grew up in the Van Cortlandt section of the Bronx. After graduating from S/A/R Academy, a Jewish Orthodox elementary school, I went to the Bronx High School of Science. English was my best subject in high school and I would later become an English major in college. My first romantic relationship was in high school and lasted for two years. I entered Lehman College of the City University of New York (CUNY) in the fall of 1994 and planned to graduate with a B.A. this fall.
My plans fell apart late in my third year of college when I started hearing voices. I had delusions to try to explain what was happening, believing I had a greater awareness and that the voices were the spirits of people trying to challenge me. I felt my emotions intensely and I believed I was intended to live life with intensity. Part of the experience was wonderful and spiritual, but part of it caused me to suffer through feelings of great fear and rage. I was paranoid. I believed that people on television and radio taunted me. They singled me out from all of their viewers because I was the only one brimming with energy.
My delusions and hallucinations affected my behavior, prompting my father to take me to Montefiore Medical Center where the doctor in the ER interviewed me. I told the doctor I was hearing voices. "What do they tell you?" he asked. I said, "They say things like, ‘He’s a man’ or ‘He knows,’ or ‘He’s waiting,’ or ‘He’s listening.’" I was angry with the doctor because he didn’t understand how tortured I was by the voices.
I stayed in the ER for two miserable days. My family agreed for me to be involuntary admitted so I was transferred up to the inpatient clinic. I felt so frightened and alone in the strange world of the hospital. I’ve been to hospitals for vaccinations, check-ups and that sort of thing. I would wait for a doctor to see me and then go home after the medical exam. I was never admitted to a hospital, never made to stay for more than a few hours. I was frustrated and angry with my family for making me go through this terrible experience.
My mother visited me. She encouraged me to "get better." Get better from what? There was nothing wrong with me. In no way did I have a mental illness.
The hospital gown I wore made me feel like a freak. I was given medication called Risperdal to swallow which took away my voices, but also my strength. I resented Risperdal because it drained my energy. My thoughts became slow and my movements sluggish. My enthusiasm for life was taken away. I used to have the energy of a genius! Instead, I became a zombie; an idiot. For two weeks I stayed on the unit, swallowing the doses of Risperdal my doctor thought were right for me.
I was discharged and enrolled in an outpatient program called Psych Systems of Manhattan. I stopped taking Risperdal as soon as I was discharged and my symptoms returned. After a week, I was readmitted to Montefiore. My second admission lasted much longer than my first, during which I was depressed and gained over 30 pounds from over-eating without exercise.
My father visited me and brought a video for both of us to watch. He told me about a man named Ken Steele who had schizophrenia and managed to help others with mental illness. We watched a program entitled "Four Stories," where Ken described his experience with schizophrenia and what he was doing after his voices disappeared. My father arranged for me to talk to Ken over the phone. Eventually, my mother, father and I would meet with Ken at his Manhattan apartment where I would attend my first Awakenings Group that night. Awakenings Groups: Living Successfully with Mental Illness are peer-run groups of 7-14 individuals who are striving to live, work and socialize independently in the community.
Upon my second discharge, Montefiore enrolled me in another outpatient program called Psych Systems of Westchester, where I got group therapy for people with mental illnesses. For the first two weeks, I sat alongside people who spoke too casually about their attempts at suicide. I never attempted suicide and felt apart from them and ashamed of myself.
I especially felt ashamed when I saw my best friend from grammar school walking down the street. I was going home in the outpatient van at the time. It brought me pain to see him, but I couldn’t turn away. He looked healthy. If he caught me on the street he would ask me how I was doing. What would I say? I would probably tell him the truth even though it would hurt. I would tell him I had been in the hospital with what was probably a mental illness. I am still undiagnosed, though they consider me schizophrenic.
I remember an old man who used to mop the floor at Nathan’s on Central Avenue. He had soft, but lively conversations with himself while he mopped, not noticing anyone but the invisible people he talked to. He had what they say I have: schizophrenia; a mental illness; a brain disorder; or malfunction or whatever. A schizophrenic with delusions and other symptoms is unfit for society unless he’s treated with medications and therapy. I still take Risperdal, but at lower doses. My schizophrenic symptoms of hearing voices and experiencing strong emotions have not returned.
Currently, I work with Ken Steele on the Mental Health Voter Empowerment Project and as the Coordinating Editor of New York City Voices. I began working with Ken after two weeks at Psych Systems of Westchester. Ken offered me the opportunity to work, something I needed to lift my spirits. Psych Systems arranged with Ken that I spend three days a week with him and two days with them. After six weeks, I was discharged from Psych Systems and able to work full-time with Ken.
Now I have a new therapist and psychiatrist, both with great reputations and I hope they will help me come to terms with what I’ve been through recently. I am slowly starting to accept my illness. I hope that with the right combination of medication and therapy, I can live a decent, even a successful life. I take Risperdal at a comfortable dose which keeps my voices and strong emotions away. It will be difficult to recover from mental illness, but I have to try.
Update 1
I shared with all of you the harrowing experiences of my first psychotic break with schizophrenia this past summer 1998 in a previous issue of NYC Voices. I had asked then, "Where Do I go From Here?" Six months later I can offer myself some answers to that question, but first I must explain why it is difficult for me to live with schizophrenia even now. Though I've come a long way since my hospitalizations, I still have a hard road to travel. I'm 23 years old. I don't want to tell people I have schizophrenia when I don't have to. But if I don't reveal it to people who are a part of my life, I carry a terrible burden. I fear the shame I might bring upon myself for having this illness, but people did not make me feel ashamed when I shared my story at the 14th Annual Schizophrenia Conference at Columbia University on May 1, 1999. And I was not embarrassed to speak at a NAMI meeting in Westchester County recently. Sure, I spoke to people who were interested in learning more about my disease, but the whole point is to realize that millions of people out there suffer from schizophrenia or have loved ones suffering from mental illness and they need to hear from courageous people who are willing to share their experiences. I also shared my experiences with a class of psychiatrists and on a separate occasion with social workers. They need to know how it is to be a young person living with schizophrenia when the new medications manage the illness as well as they do.
It's really hard to live with this disease even when it's being managed by medications because one of its main symptoms are "delusions." Often I need to question what is real or delusional. I was waiting on the street for a bus in the Bronx one night, not too late at night -- about 9:30 p.m. And there was a lot of activity in the area. But the feeling of being the only white kid on the street suddenly came over me, making me feel alone and vulnerable, maybe even a target. I became uncomfortable. On the bus I thought a man was looking at me with angry eyes. I later asked myself, "Is this normal or is it the disease?" Is it reasonable for a lone "white" kid to be afraid at that hour on that street or is it schizophrenia? That kind of confusion is hard to live with.
Since I've been diagnosed with this illness my parents want to have more control over my life than I want them to have. They don't really trust that I'm taking my medication after I do something they perceive as irrational. If they panic, I'm not comfortable with the idea that they can have me put away in a hospital. Why should I suffer for their insecurities? Imagine how it would feel to be someone living with a mental illness who faithfully takes his medication, but is one day forced into an ambulance by EMS workers and driven to a hospital. You'd feel great anger and humiliation after your rights have been violated. Recently I had some back pains that kept me up for hours when I needed to sleep. I thought that getting some fresh air might help. The persistent back pain made me irritable which was why I did not bother telling my father that I was going for a walk to relieve the pain even at 3 o'clock in the morning. I just left the house with the door slamming behind me. I hate having to tell my father everything I am about to do, but that is the pattern I've gotten into these past months since my first break.
When I got home about a half hour later my father was upset and grilled me with questions I did not want to answer. I just wanted to be left alone to deal with my back pain. While I was gone he called my mother and she called my sister to find out where I was since we all live in the same neighborhood. My parents assured me that they were worried as much as they were because I did something irrational and because they loved me, but I know they worried a lot more because I have schizophrenia. I really don't know what to do about this very serious situation except to move out and find affordable housing away from them. I can't change the fact that I have schizophrenia. I take my Risperdal daily, but I can't expect my parents to believe it. My parents are decent parents but I know when they don't trust me. Since I have this disease, my parents won't treat me like the 23-year-old man that I am, but like a child. Despite the difficulties surrounding my illness, "Where Do I Go From Here?" is not such a profound question anymore. With surprising swiftness, I have recently become NYC Voices' Managing Editor and a Consumer Advocate so I will go wherever these new responsibilities take me while continuing the efforts to destigmatize schizophrenia by revealing my personal story to as many people as possible.
Update 2
The night of Hurricane Floyd I dreamt I was waiting someplace which was familiar to me. I stood alone while my friends boarded a bus. They were freedom fighters and we were all headed to the meeting grounds. I did not board the bus because I was waiting for something. I knew they were leaving me but there was nothing I could do. I stood there confused and very afraid. I ran after the bus. It soon disappeared. I’ve been to the destination before. I could see it in my memory. I was walking through unsafe neighborhoods. It was dark and I was cold. It had just rained. The concrete was wet. I went inside a grocery. It was filled with shady characters. I was afraid to ask for directions. I was getting lost, but I was driven forward. People were looking at me. I just wanted to get away. I didn’t belong there. They were wondering why I was there. They wanted to take advantage of me. I walked faster.
I reached the end of the avenue. I leaned forward with my chest pressed against the rail and looked down. Ocean waves were crashing against the rocks far below. I had to keep moving. I turned right. A great concrete hill sloped down into the distance. I could vaguely see buildings at the bottom. I wanted safety. A girl standing nearby told me to go down the hill. She said there was a phone down there. I started down and even though doubt filled my heart, I reached a building and went inside. I was in a room and waited, trying to make sense of it all. My heart was pounding. I needed help. I was paranoid. Please, won’t somebody make the voices stop! I was about to dial my therapist’s emergency number when I awoke.
To anyone else this dream would be shaken off as a very bad one. But I’m not just anyone else. I’m a paranoid schizophrenic and this nightmare paralleled the actual first psychotic break I experienced one year ago.
The voices and the hallucinations, the delusions and the hospital gowns that labeled you mentally ill, the feeling of being over-medicated, the isolation and the fear, the doubt and the self-pity were all part of my experience one year ago. "Stigma" was defined by the New Merriam-Webster Dictionary as "a mark of disgrace." The word is used a lot within the consumer movement. There’s stigma surrounding mental illnesses such as schizophrenia. According to the definition, I’ve disgraced myself and my family and under normal circumstances, my illness would be kept secret from everyone. I’m part of a culture that mocks mental illness, fearing it and misunderstanding it. I grew up doing the same until mental illness entered my life. "Of all people," I thought, uneducated about the disease and in denial, "it had to be me." Whenever I hear the words insane, insanity, nuts, lunatic, loony, madness, disturbed, or psycho -- I flinch because these words refer to me. Sometimes I feel like it’s not a disease -- it’s just the way that I am, a horribly disfigured person, an outcast even though the hospitalizations and psychotic symptoms have passed. Unlike a disfigurement, I can hide my shame from everybody.
Thanks to my medication, Risperdal, no one would ever guess what happened to me only one year ago or what disease caused it to happen. I look and behave like your typical commuter, but when commuting on a bus or a train, we sometimes see people who are not doing as well as we. They are what I could have been if left untreated. Through a program called, "Person to Person," someone phones me every morning, reminding me to take my Risperdal. One year ago I didn’t want to ever take medicine. But I made an agreement with Ken Steele, publisher of New York City Voices, to give the medication time while my brain adjusts to it. It used to be an effort, but now taking my meds is about as routine as putting on my shoes. Besides my medication, there are my relations with family, friends, and doctors, and the work as the managing editor of NYC Voices, which keeps me well.
In June, with Ken, I traveled to Washington, D.C. to attend the National Mental Health Association’s conference, celebrating their 90th anniversary. It was a privilege to sit at the head table and watch Ken accept the NMHA’s highest honor, the Clifford W. Beers Award. At the conference, I accepted the media award on behalf of Leora O’Carroll, whose production aired at a time when my family was shaken by my schizophrenia. In a private ceremony, I gave Ms. O’Carroll her award and thanked her for the hope her segment brought to people like me who are coping with schizophrenia.
Even though stigma surrounds schizophrenia, I publicly declare myself a schizophrenic with every television appearance. Channel 11 News at Ten aired a segment in which I appeared to represent schizophrenics who lead productive lives in the community. I was also taped by ABC’s nationally broadcast show, 20/20, with the rest of the editorial staff of NYC Voices and later on with the Manhattan Awakenings group. Awakenings are peer-run support-groups for people living successfully with mental illness. Awakenings group members had issues they wanted to discuss so it was only a matter of time before discussions began, broadcasting crew or not. ABC’s World News Tonight taped me for a piece where I described the voices of my psychotic state. It was exciting to tape for the show in the morning and to watch it air the same evening.
These television appearances should teach the public that schizophrenia is a disease where we suffer just like in a physical disease such as cancer or diabetes. But since it is a mental disease, the suffering is of the mind, consisting of unusual auditory and even visual hallucinations and delusions which we cannot control. The public must realize that most of us are more likely to hurt ourselves than others.
My story illustrates the importance of immediate treatment and recovery after a first psychotic break. I shared it with a group of psychiatrists and social workers at Columbia University as well as with a Schizophrenics Anonymous group in New Jersey. On October 31, I leave New York for New Orleans to do a workshop on "Self-Help: The Next Generation" at the American Psychiatric Institute on Mental Health. In December, the New York State Office of Mental Health will have their research conference in Albany and I will participate in a first-ever "Ask the Consumers" workshop with psychiatrists and other professionals seeking my first-hand knowledge.
Reproduced with permission from New York City Voices, where you will also find more information about recovery.
