I was diagnosed with sz about 44 years ago. It’s been a long arduous journey. But it seems to me that I lived the label for many years. I was told that I wouldn’t be able to do much including work. I was told that sz is a debilitating disease that no one recovers from. I was told to take my Haldol and go home and exist. I lived the diagnosis. The way I thought I was supposed to behave is the way I lived. I was living the label. Soon though I began to question what sz is and what the cure is. I felt that maybe the medication I was taking was the wrong medication. So, I stopped taking Haldol and ended up back in the BHU. I started Abilify and I Had a quantum leap in my recovery. I began to feel better and I began to feel like I was thinking clearer. After I was discharged I began to learn about recovery and thought I could get back to work. I wasn’t going to live the label. I was gong to be my authentic self and thrive. What was you experience in living the label?
I tore mine off, got tired of it making me itch.
Right on bug! Who needs to be put in a box!
I’ve had schizophrenia for 44 years too. I kind of never lived the label. I was never told that I couldn’t do something. Oh, I did my share of suffering and I was psychotic for a solid 2 1/2 years when I fist got sick. I spent a little more than a year in a house for schizophrenics in 1980-81. The first thing I did when I got there was I got myself a job. My parents and the counselors just laughed; they told me you don’t have to work, just concentrate on getting better.
So I spent the year taking walks, hanging around with my fellow tenants in the kitchen, hanging out in the recycled book store and doing stuff with my family. After about 14 or 15 months I got kicked out over a misunderstanding and went back to live with my family. I lasted about two weeks and had to be hospitalized in a psyche ward for two weeks, then I was put in a long term hospital for 8 months.
During that time my symptoms were constant and intense but I didn’t feel I had to act any certain way. I guess I just went with the flow, my sisters told me I was the most normal looking person in the hospital and I didn’t act crazy. I had delusions I would tell my dad but around anyone else I talked normal and made sense and was perfectly logical. But I needed to be in that hospital.
After 8 months my parents found another group home for me; my parents came and got me and dropped me off at this house and I had dinner with the whole house, 8 clients and 3 counselors. They told me I was going over there for dinner so I sat there and ate and didn’t say a word to anyone, then I sat in the living room, again not talking until my parents picked me up and took me back to the hospital. The next evening my parents called me; they were dismayed, the counselors at the house had told them I hadn’t talked to anyone. Then my parents told me the whole idea of having dinner was to talk to the clients and counselors and ask questions. Somehow they got me another dinner at the house and I forced myself to talk this time and they held a meeting and invited me to live there.
So a week and a half later I moved into this group home but they called it a residential treatment home. Their whole tenet was that they believed to help mentally ill people they needed structure and this home was heavily structured. We ate together every night, we took turns shopping and cooking, we. had morning and nighttime chores and we had to get up at 8:30 am every day and go to bed at 10:00 pm every night. We had a mandatory therapy meeting every Thursday night and a general business meeting every Sunday night. We had to clean up after ourselves in the kitchen, bathroom and living room.
We had free time where we watched TV or played basketball out back or went for walks or we spent many evenings playing backgammon in the living room. We had an outing once a month where we went to a museum or to the beach or out to eat. I fit in good there, I got along with everybody but thinking back maybe some of them didn’t like me, IDK.
The agency that owned the house had a vocational program around the corner. down the street. !4 people went there every day for 6 hours and we had groups and classes and meetings and we did some minor work like doing paid yard work in the community and mailing projects for the post office. We would all rotate and do yard work for month and then do mailing projects for a month and then yard work again.
We had weekends free at the house and I used to catch the bus for 1 1/2 hours to visit my parents and spend the night then catch the bus for an 1 1/2 back. All the other clients were the sons and daughters off doctors and lawyers and businessmen and their parents paid $2000 a month for their kids to live there. This was in 1983 dollars. I paid just $400 a month because I was the last person they let in who paid from their SSI. So I lived there and went to the vocational program.
Then in the vocational program, through a series of minor steps I finally got a job after 9 months there. I didn’t think I was anything special, I just saw myself as just another client but they gave me more and more responsibility and then a job opened up at a hot tub place that this vocational program had a deal with to supply them with workers.
So me and a guy named Larry started working there. I was hired to do all the maintenance and Larry scrubbed down the rooms every day. I don’t how he did it but he did it for three years. I did it a couple times and I hated it. I ended up staying there four years, through psychosis, depression, drug addiction and feeling totally sedated. It wa an interesting place, it rented out private rooms to 1 or 2 people for an hour with a hot tub and a sauna in each room. There was also a shower and a bed and we supplied soap. We also offered massage and it was all perfectly legit.
The owners were this young couple and most of the people who came there were young yuppies. The charge was $7.00 per room per hour.
Anyways, this is what I meant that nobody told me what I couldn’t do. This was 1983, before the internet. I knew nothing about schizophrenia, I didn’t read up on it. Nobody told me I was supposed to have social problems and that I shouldn’t be able to work. I just did it. And in 1985 I enrolled myself in college. I didn’t know schizophrenia was supposed to make this hard, I just thought it was a good idea and took some classes. And eventually I got a car.and made a couple of friends. I was living in supported housing but we were pretty much on our own except for a group meeting once a week with a counselor.
Me and my friend would go to the park and play baseball or ride bikes or go out to eat or go to his parents house. There was a neighborhood park down the street and we would play pick up basketball with strangers. That was a good period of my life, I was 25 and fairly stable. Then they moved me and my roommate out to a different house, it wasn’t as nice.
After several months there, I tried cocaine for the first time. I loved it, it made me feel so talkative and elated. Then I tried crack and loved that too but I got addicted and spent the next four years going to bad places where there were bad people doing bad things. I was still working though.
I wasn’t living the label at all. I worked, had friends, went places and did things. Crack is bad news but I was out partying with new people and going unexpected places. I moved around quite a bit and ended up in a five bedroom house with four other people. One guy I made friends with and we partied there for about a year. The same agency that ran the group home ran these houses but we were left alone to do what we wanted except maybe once a month we met with counselors.
We partied like crazy at that house and had guests over who we partied with. The other woman that lived there moved my friends older 40 year old friend into her room without telling the agency. He had a guns in there that he took them out and showed us. Then my friend rented out a room to a mutual friend, again, without the agencies permission. We were just running wild.
At the same time I had a life with my family where I visited them and my dad used to loan me his car which I promptly wrecked. Anyways, those were my drug days.
I had a relapse in 1988-89 and was hospitalized several times more after staying out for 5 years and it was more suffering and agony. Then my dad didn’t know what to did with me so he put me in a temporary emergency group home. I was still partying but after four years of addiction starting in 1986 I got clean and I’ve been clean ever since.
I’ve gone to over a 1000 AA, CA and NA meetings. And once I got clean my whole life changed. I was going to meetings and only hanging out with clean and sober people, I got another job and I went back to school. I started living the principles of the program and practiced rigorous honesty and tried to help other people get sober. I hung out with a sober friend and we went to meetings and AA functions like dances and holiday celebrations.
To make a long story short, I’ve been working almost steadily since 1990, in 1995 I moved out on my own and rented a room in someone’s house. I got a car and did all kinds of fun stuff. Nobody knew I was ill except family and close friends. I went all kinds of places and even flew back east a few times with my dad. So I really haven’t had the label.
Nowadays, for the first time I think (I’m pretty sure) that people at work can tell there’s something off about me and the bosses know my diagnosis but my co workers and the office workers in the building I’m a janitor at don’t know my diagnosis. I isolate these days but I still freely come and go out in my community.
Thanks for sharing Nick! That’s quite a journey! I hope you continue to have a good time without labels restrictions! Shine Nick ahine!
Australia and Germany is totally different to be defined schizophrenic. I lived in both countries equivalent time. Throughout the years since 1988 the understanding and treatment of schizophrenia changed a lot. I always admitted to myself I got schizophrenia and was happy with it. I was still in the workforce as a Normie till 2014 or so. I had a view admissions to hospital in that time. These days I think I am totally misunderstood dealing with the mental health services on a weekly basis. Sometimes I think I go back into employed work just to have peace from the mental health services. It kind of seems I landed a job as a specimen for experimental treatments of mentally ill people and the spoonful of money dished out to buy food and pay rent is my pay.
I personally avoid them for my own mental health
me too others may put a label on me, but I really don’t care it never will and doesn’t define who I am
You’re lucky to have some good experiences. You probably live in a more progressive area.
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