First Break: One Year Later
(Column: First Break)
Daniel S. Frey, Editor in Chief
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.