An Interview with William, Activist and Enthusiast

  • The "100 Individuals with Schizophrenia" interview series continues with William, an all-around good guy I met years ago when I lived on Staten Island. He's a natural-born speaker, and though he professes not to be, I let the voice recorder roll . . . and sure enough, he was down-to-earth and spontaneous.

     

    CB: Let's talk free-form for a bit. Tell me as much as you're comfortable with about your story. I usually start off by asking how old you were when you were diagnosed.

     

    W: Well, I'm pushing 48, and I was diagnosed at 15 years old.

     

    CB: That was an early onset. Could you tell me what your symptoms were and how it came about?

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    W: My parents were getting divorced, and my sister went away to college. I was alone in a new neighborhood with the family, and I didn't have any friends, was very depressed and getting anorexic. I did that all through summer, stopped eating, from freshman year on. When I was back in school as a sophomore, things turned around. I was eating and getting along. Then boom (snaps his fingers) my mother tells me, "You're going into the hospital."

     

    CB: That must have been devastating.

     

    W: It broke my will, and I was diagnosed with anorexia. I don't think it was smart to be diagnosed and labeled at that point when I could've gotten out of it. I was young and home alone with my mother, and I wasn't in good physical health. Also my mental health was shaky, and I couldn't understand why my mother would do that. I got lost in my head, as the expression goes. I'd go down in the basement, lock myself in and listen to music. She'd bang on the door and scream at me. I slid into a deep depression, and graduated high school-but barely.

     

    CB: You were hospitalized in 1978. What prompted that?

     

    W: By the time I was 18, I stayed in my room, I didn't shower, and I walked around in my pajamas all day. My mother called the cops. I was sleeping, and they dragged me out of bed, handcuffed me, and drove me off to South Beach [a psychiatric hospital].

     

    CB: How long were you in the hospital?

     

    W: For a month. I still remember the date: it was November 6, 1978. I got out by Christmas, and joined a pretty good day hospital for six months. It was around April or May, I started making friends and feeling good again. One day my mother showed up at the hospital all angry, holding her pocketbook and going like this (shakes his shoulders back and forth dramatically). She goes into the office, and the therapist comes out and says, "Your mother doesn't want you home any more, she wants you in the hospital." So I said, "I'm not really sick," but they said to go in. At that point it was June, and I knew, "I can't let this happen again. She's already messed up my life for four or five years."

     

    CB: How did you get out of that one?

     

    I told the staff, "Okay, I want to live with my father," and so I went to Pennsylvania. He's a big fan of work and thought that if you didn't work, you were a bum. He told me, "You're going to work." I found a job that lasted only two weeks. My father said I'm no good, he told me he was going to take me down to the river and drown me.

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    CB: My God.

     

    W: One day, he said I couldn't live there no more, and so he drove me back to my mother's. Actually, I followed him in the car I bought-it cost one hundred dollars. He left me at her door. She came home from a birthday party and asked me, "So what makes you think you can stay here?" I didn't have the wherewithal, I never really recovered from the problems I had when I was 15, so I told her, "Where am I going to live if you don't take me in?"

     

    CB: Go on.

     

    W: Like my father, she wanted me to work. So I scoured temp agencies in Manhattan. At the end of the day, I got a job at L.F. Rothchild. It was a good job, the people were nice, and I stayed there for a month. It was the summer of 1979. Then my mother told me, "You should go to school." What did I know? I thought she had my interests at heart. So I started college, and one day she told me, "I'm calling the hospital. You're going in." I asked "Why?" and she said, "I don't want you here."

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    CB: I can't believe this.

     

    W: At that point, I took my luggage and escaped out the window, and went to the ferry terminal. I called my father, who rather than pay my mother the money for my support, sent me rent checks for a furnished room in a rooming house. I was eating well and sleeping well for a number of months. And then I ran into this guy I met in the hospital, he kept pushing me to hang out. Finally I broke down, and he got me hanging out . . . drinking and hanging out with him. One day I couldn't take it so I threw his radio against the wall. He punched my head, and drew blood. I felt fear, everything was disintegrating. I told myself, "I could kill myself, but I'm only 20, I'm too young to die."

     

    CB: You were hospitalized again in 1980. What were some of the thoughts going on in your head?

     

    W: After that breakdown, I had a lot of fear, anxiety, depression, a lot of hopelessness. This longer hospital stay was the straw that broke the camel's back.

     

    CB: So, you were in and out of the hospital in the eighties?

     

    W: Mostly in.

     

    CB: What medication did they give you back then?

     

    W: I was on Navane, one of the older drugs. The psychiatrists tried different things, and this one worked the best. Originally in 1978 and 1979, the doctors put me on little token doses of medication, and took me off it, because they felt I didn't need it.

     

    CB: When you were on the Navane and stayed on it, how did that affect your symptoms?

     

    W: It calmed me down, and I needed that. I didn't have my first psychotic symptoms until 1982 when I took myself off the Navane.

     

    CB: Could you tell us some of the symptoms?

     

    W: Oh, I had "homosexual panic"-I thought homosexuals were attacking me while I was asleep on the unit. I thought they were coming in my room while I was drugged up. People had that before, there's such a thing.

     

    CB: Your last hospitalization was in 1982?

     

    W: No, I wasn't smart, I was in my twenties, and thought I could do without the meds, so kept taking myself off them up until I was 34. I was hospitalized on and on.

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    CB: When do you feel things changed for the better for you?

     

    W: I was 34, and it clicked, a light went on. From 1994 until 2004 I stayed out, except for the time the new psychiatrist tried me on an atypical. It didn't work, and I was hospitalized for three weeks.

     

    CB: Still, that's a remarkable accomplishment: you were out for 10 years.

     

    W: Yes, it's not a place you want to go . . . in the hospital.

     

    CB: What are your top three coping skills for living with the schizophrenia?

     

    W: One thing: you gotta take the meds. Another thing I feel is having something to do during the day, a place to go. Keep yourself active, and don't hibernate inside a room or an apartment. Get out there, even if it's just to go to the movies if you have the money. Could be a coffeehouse. Maybe you can't do it every day, but don't isolate, that's the key. Also, to develop a support system, have a circle of friends, that helps as well.

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    CB: You've made a life for yourself. Tell us about some of the things you're passionate about.

     

    W: I spend time at Skylight Center [a clubhouse]. And I'm also a member of NYAPRS [New York Association of Psychiatric Rehabilitation Services].

     

    CB: Tell me about NYAPRS. You've been involved with them for three years.

     

    W: It's an organization of peers with psychiatric diagnoses, and basically we do two things. We go to legislation day in Albany and we lobby for changes in laws. I'm a field organizer. I meet with the other field organizers each month to discuss political issues. The legislative process is a slow process, and change doesn't happen quickly. For everybody pushing in one direction, there's somebody pushing in another direction. The second activity is the film festival-it's Saturday, April 26 at St. Francis College {in Brooklyn] this year.

     

    CB: What's a typical day like for you?

     

    W: I drop in to Skylight Center, it's a nice clubhouse. They give us meals every day. You can work in the kitchen unit or the clerical unit. I've been going steady for 15 years. I met a lot of good people up there, a lot of caring people on both sides of the couch. That place if anything saved my life.

     

    CB: How did you find out about the military movie screenings at the Fort Hamilton army base?

     

    W: Well, I used to go into Brooklyn and hang out in a coffee shop in Brooklyn Heights, and there was a newsstand on the corner that sold the Brooklyn Courier. It advertised the Audie Murphy movie, To Hell and Back, and I was interested in that so called up the number. They told me it was free and ran every month. I've met guys I hang out with there. I've been doing this for four years.

     

    CB: You're 48. What can you tell others in their forties and fifties about living well with the schizophrenia in their "second act?"

     

    W: Like I said, the big thing is to stay on the meds. It can keep your symptoms from re-occurring. Without the medication, there are things people say or that can be done that make you paranoid. When you're off the meds, you can get paranoid easily, but on the meds, at least in my instance, it's easier to discern, you see, it's not so much what people say or what you think, but how you react to it. If you react with fear and confusion, and say, "Oh, my God!" that's not healthy. If you're acting calmly, you can say, "So what."

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    CB: What advice could you give others, either those who've been recently diagnosed or people who've been in recovery a while?

     

    W: The main thing is to hang in there. Life isn't all smooth sailing. It never ends until it's over. Like Yogi Berra said, "It ain't over till it's over." You need to work at it [your recovery].

     

    CB: Final words?

     

    W: Good luck to everyone out there and that you can find your niche in life.

     

Published On: April 01, 2008