The "100 Individuals with Schizophrenia" interview campaign continues. I talk now with Marvin Spieler, director of the Consumer Speakers' Bureau of the Mental Health Association of New York City (MHA-NYC).
CB: Give us an introduction for our community members.
MS: I've been living for the last 14 years in Brooklyn in a supported apartment that is OMH-subsidized. I pay 30 percent of my income in rent. It's similar to Section 8 and is sponsored by the Office of Mental Health.
CB: Okay, let's talk about your history. You were diagnosed with schizoaffective in 1960?
MS: In 1960, it wasn't called schizoaffective, it was paranoid schizophrenia. Schizoaffective came 10 or 20 years later. I was 16 years old, in high school, and I got what I call "hypomanic." I knew what I was doing, but I was acting differently. I was more outward-going, more social, more controlling.
CB: What was going on at the time?
MS: How it started was that I was going to bed at one o'clock in the morning from September until April when I left school. I was getting asleep at one, getting up at six and getting my mother out to work, making her breakfast and a bag lunch. Then I made my breakfast and was at school at eight o'clock to pick up a bundle of the New York Times for the teachers who subscribed to a daily copy. So that by 8:15 a.m. when they came in their paper would be in their mailboxes. After that I would go to my classroom for check-in and then go to the office where I was running the traffic squad. I was the lieutenant, managing the floor, checking that people were in the middle of the hallway, on one side of the wall so they wouldn't collide. In the morning I'd come in and assign the floors. There was one guy who got to his spot late-I regret it now but I fired him because he wasn't playing by the rules, he wanted me to break the rules. It didn't matter if he was a minute early or a minute late, but the way I was acting when I was getting sick, it was either black or white, yes or no, you did it the right way or you were off the traffic squad.
CB: Tell us what happened when you got sick.
MS: That wasn't the end of it. I came home after school and cooked dinner, on Thursdays I shopped, and occasionally swept and washed the floors, and I did the laundry. Some of the chores I resented doing-I got no thanks from my mother. It was only the two of us-my father died when I was seven. She gave me a penny, or two cents. I wasn't getting enough sleep; I had too many chores to do. I already was in therapy when I was 13 years old and I was getting sick, hypomanic as I said previously. The teacher I was working under for the traffic squad pulled me out of the squad and stopped having me deliver the New York Times, and I was no longer the editor of the Whitney Scholar, the honor society newspaper. I came up with that name, it was a good name. This broke me, and I went into a depression. I went from being happy and high, to low. Eventually I dropped out of school and told my mother I was suicidal. We went over to Bellevue [famous New York City psychiatric hospital] and I signed myself in.
CB: That must have been frightening.
MS: It was March 31st, and April Fool's Day when I wound up on the ward. It was no joke what I experienced-yelling, screaming. I was put on suicide watch, with a bed in the hallway where a woman-an aide-watched over me with a light, it was hard to sleep. I put my slippers that they gave me in Admitting under the bed and in the morning those slippers were gone. They were made out of cardboard and cloth.
CB: How long were you there?
MS: I was there for 45 days. My mother contacted my social worker and I got into a place called Hillside [a private psychiatric hospital in Queens]. I spent six months there. They had what was called milieu therapy.
CB: Refresh my memory about that technique.
MS: The environment, it's a French word. You'd go to activities and participate in O.T. and dance, a teen group, inter-unit activities and community meeting. Those were some of the activities, there were more. Even a barbecue. It was hoped that by being active you would snap out of your depression.
CB: Were you given medication at the time?
MS: No, not in the 1960s.
CB: Even though you were suicidal?
MS: My ideation thoughts evaporated. I wasn't suicidal, I was depressed and by the time I got to Hillside, I was enjoying the activities. I became the D.J. for the dances because their PA system broke down and I used to carry my stereo from my room to the auditorium-a big room where there were dances. The patients would come over with the records they wanted me to play. I tried as best I could to accommodate them.
CB: When were you finally given drugs and how did you know things had to change?
MS: I got sick four years later but I didn't know mental illness was a chronic disease. I was going to college, but I had no supports. I got sick in 1964 and was psychotic, and I wound up stealing a car. I took it to New Jersey without a license.
CB: Did you know how to drive?
MS: All I knew was how to ride a bicycle around the streets of New York City.
CB: Were you arrested?
MS: I was lucky I took a small car-a Renault-it was imported from France, smaller than a Volkswagen. I managed to go through the Lincoln Tunnel when it was only two tubes and one lane going into Jersey, with cars coming at me. Shortly I was picked up by state troopers and spent the week in jail. I was extradited to New York back to Bellevue-this time I was on the prison ward. They put me on Thorazine. I was for a short period of time-when I was getting hypomanic in 1964-seeing a psychiatrist and he gave me a supply of Thorazine. The problem was he told me, "Take it when you need it," and I didn't know when I needed it. I was hyper, but I wasn't psychotic. I think being on and off medicines brought on the psychosis, and I started hearing voices.
CB: What happened after Bellevue?
MS: I ended up in Manhattan State, it wasn't a nice place. There was nothing to do except smoke cigarettes and eat three meals a day. You waited on line for a half hour and had five minutes to eat the cold food put in front of you-mush, sauces and chopped-up food. Once every three weeks you got a piece of chicken. I came up with a name for it: an anorexic chicken, something you don't get in a supermarket. The quarter of the chicken was so small, you had a couple bites.
CB: It was a state hospital.
MS: Yes. There was no radio, no TV, no phonograph, no newspapers, no public telephones on the ward. If you were sending out mail it had to be censored, you couldn't seal the envelope. The staff had the right to read the letter and cross out anything that gave a poor picture of the hospital. There were no patient rights at all.
CB: After you were released, did you take your meds?
MS: No, I was on and off drugs for 20 years, and I decided finally to stay on them because I had met Rheta. It was upsetting me, and it was upsetting her for me to be in the hospital, so I became compliant.
CB: Tell us about Rheta.
MS: She was a lovely person-bubbly, effervescent, loving, giving, accepting. One thing she did that my mother never did was Rheta listened to me and that meant the world to me. She was very social and I was shy; she introduced me to some of her friends. We were both on welfare, living in a YMCA, that's where we met. We lived together for 12 years in various welfare hotels, we had an apartment for awhile, then I joined a day program which got us a better SRO-a single room occupancy, as it's called. We were married for over 12 years, and she died in 2000. What made the difference in my recovery was meeting Rheta, going on Lithium carbonate, and being put on an antipsychotic.
CB: Talk about your work with the Mental Health Association of New York City. You've been with them for 23 years.
MS: I was at a volunteer position for a number of years, and my social worker asked if I wanted to get a supported work job. This was a position that paid less than minimum wage so it wouldn't affect your [disability] benefits. So for example I got two dollars an hour instead of $2.10. I worked there for twelve hours a week. I was doing it for three years, and told Rheta I wanted to quit because I was getting bored with the work. She told me, "Look, you're not finding it hard; it's easier than when you worked at FAMI [the volunteer position]." All I did was run the Xerox machine, do some filing and delivery of envelopes. I stayed, and shortly thereafter they got a new director. She was oriented towards adults with mental illnesses. She obtained a grant to locate self-help groups in Manhattan, and I did that for two years. She got me another grant to explain the rights of peers in supported housing. That grant ended, and I approached Giselle [the director] and said I'd like to go around to programs and continue what I was doing, to speak to peers. She asked the topics. I said medication compliance and support systems. I would locate agencies willing to let me speak, and went back to some of the old ones I knew. She asked how much I wanted, and I said, "Double what I'm making now."
CB: So that's how the Consumer Speakers' Bureau was born?
MS: Yes. I've done that for many years, and I'm still doing that-for 23 years.
CB: You've been in recovery your whole life. I wonder what you can tell those of us coming up about living with a mental illness in our later years.
MS: Well, I was out of the hospital for 21 years and then in the hospital two weeks to get a medication adjustment. I had to go off Lithium; it damaged my kidneys so now I'm on Tegretol. I'm trying to basically figure out what my needs are going to be. From what I know, the medication needs change, I don't know how. There aren't enough geriatric psychiatrists. There's a shortage of psychiatrists and when you subtract the ones that are good from those that are marginally good, the numbers get smaller. I'm not sure what I'd need. I know I'd need to be in a building where I can walk in without climbing steps, one that would have an elevator. Depression might be a problem-to get out each day, whether I wanted to or not. Not to isolate, that has to be overcome. The illness may change, and the dose could be different for senior citizens than the general population. So I worry about getting a doctor that knows about the differences in medications. In terms of housing, right now I'm in a good neighborhood but there are limitations on how much OMH is willing to pay for the subsidy, and I may eventually have to move into a cheaper apartment. And the neighborhood may not be as good, I could get mugged.
CB: I'm a librarian, and I was particularly touched to hear you're the proud owner of a library card. That card means so much to you. Can you comment on this?
MS: For quite a number of years I didn't get a library card because I find it hard to concentrate and remember. It was a side effect of the past and current meds. I can't remember too much of what I read. I can remember broad ideas but not details. I used to go into the library to see what they had but I would never take out a book. There is a library on Union Street and Clinton, and it's one block away from my apartment. I wanted to take out videos, and so I finally got the ID together to get a library card. This past week I was back at the branch and wanted to check my e-mails, so with the help of the librarian she set me up with a PIN number so I could sign on electronically for the computer. I'm very happy now.
CB: Give us some parting words of encouragement and inspiration for our readers living with schizoaffective or schizophrenia.
MS: We're now in the second generation of psychiatric medicines, and in the next couple of years I hope there will be blood tests to pinpoint the treatment to give you. And with genetics-they will develop a third generation of drugs better than the second. I've heard it-I'd like to see it happen.
Published On: May 27, 2008