I’ll start off by giving you my medication history. I was first put on medication in the hospital in 1981 when I was 20 years old. They put me on 60 mg of prolixen and I stayed on that the entire 8 months I was there, it didn’t help me get better but it stopped me from getting worse. When I was released from the hospital to a group home I stayed on 60 mg and I stayed on that 9 months later when I got my first job since becoming schizophrenic.
So I hadn’t worked in three years and when I got this job I was so sedated from the medication that I was dragging myself around, every step was an effort and I remember telling my parents I would just keep going until I dropped in my tracks from tiredness. I was seeing a psychiatrist at the time and he started slowly tapering me down, 10 mg at a time until I was on 30 mg of prolixen a day which is still a high dose and the tiredness got better.
I stayed in supported housing and then moved into my own studio in 1987, while I was there I was fairly stable so my psychiatrist reduced my dose to 20 mg. I had made friends with my normie neighbors and I was hanging out with them almost daily but when one of them found out I was on medication he threw my pills away and told me I didn’t need them. I could’ve relapsed because of his ignorance.
I stayed on 20 mg of prolixen a day all the way from 1981 to about 2004. By this time the second generation medications had come out and the new doctor I was seeing at the time decided I would do better on the new drugs so he put me on xyprexa but that didn’t work so he put me on Abilify and I couldn’t tolerate the side effects so he put me on resperidone. That drug worked good for me so he took all the way off prolixen, this was before drug cocktails came into fashion so I was just on the resperidone alone and I stayed on it from 2004 all the way up to about 2022 when my doctor put me on the monthly Invega Sustenna injection and took me off resperidone.
Around 2023 I also started on quetiapine because I was getting agitated by some neighbors who I wasn’t getting along with. I was given 400 mg of quetiapine to take nightly and 100 mg tablets to take as a prn. So the injection and the Seroquel are my current regimen. I’m in the process of tapering down my Seroquel, I’m now at 300 mg.
You asked about my treatment history, well first I was put in the hospital for 8 months, while I was in there they held classes like English and elementary math and some other ones and we had groups too so I guess the classes were a form of treatment, they certainly broke up the daily boredom and monotony of daily life in the hospital. A psychiatrist would visit every two weeks and see patients for 15 minutes at a time, I don’t think he really helped anything.
After the hospital I moved into a group home and the people who ran it gave me a list of all the psychiatrists in the area who took Medicaid. I don’t know if this still normal practice but back then in the early 1980’s psychiatrists who were just starting to practice would take Medicaid recipients to build up a clientele until they didn’t need Medicaid recipients and would stop taking them as patients. I saw that psychiatrist for 5 years until 1989 when I moved out of the area.
But back to the group home, the people who ran the house thought the best way to help mentally ill people was by giving them heavy structure, the whole house routine was built around structure. So getting up in the morning you ate breakfast at the same time every day then you were assigned a chore. It could be cleaning the living room or vacuuming the stairs or cleaning the bathroom or cleaning the kitchen etc. We did our chores at the same time every day and a client who was elected house manager would grade you on how well you did it.
We also had evening chores. Dinner at 5:30 was mandatory for everyone and we all took turns cooking. We had two mandatory groups, they rarely let anyone get out of attending a group but thee were exceptions. The first group was Thursday night at 7:00, there everybody checked in on how they were doing and very other week we went on an outing instead of group. It might be walking to the ice cream shop for ice cream or just a walk around the neighborhood, nothing major.
The groups on Sunday at 7:30 were mainly business meetings. We all took turns being house manager for a month. The house manager ran the meeting and not only was he in charge of assigning chores but he also graded you on them, a poor grade could get you in trouble. Also, the house manager assigned the cooking detail and if you were picked to cook dinner for 10 people you submitted a recipe for approval and if it was approved you submitted a grocery list of all the ingredients you would need to cook it.
The house manager took the list of ingredients and they would make a master list of 5 peoples ingredients and once every two weeks the counselors would assign a grocery shopping detail of 4 people plus one counselor and we would all hop in a van on a Wednesday night and go to a nearby store and pick up all the ingredients for the week. So that was a typical Sunday night meeting. We had monthly mandatory outings; once a month at the Sunday meeting the house manager took suggestions for an outing and held a vote for which one people liked and one Sunday a month we would go places like the beach or to a fancy restaurant or to a museum etc.
Not only did we have all this structure but we were required to have a daily activity that got us out of the house every day. Some people worked, some people went to school and most of the rest did what I did and went to a vocational program. The vocational program was right down the street and run by the same agency that owned the house. I’ll try to describe the vocational program briefly. Basically it was mostly people from our house plus people from another house the agency owned which was a block away from our house. There were several people who were not in the agencies houses. The vocational program we held in a large two story house converted into an office for the counselors. Basically people would go there for 5 days a week from 9:00 am to 3:00 pm. The vocational program was meant to get us ready for work but not everybody there ended up working.
A typical day was to go in for morning group. At the group you were assigned one of two tasks. You either did mailings or you did yard work. The post office would give us three or four duffle bags filled with flyers that needed to be collated or stamped and mailed out. The yard work crew would load up two vans with the tools the agency owned and kept in the basement and then the counselors would drive us around to three or four houses to mow, rake leaves, sweep, weed and other light tasks. The money we got from the house owners went into a fund to pay for an outing once a month for all the clients.
The program also held classes and groups. It was also pretty structured. They eventually got me a job in the community but I went to the program for 9 months. So that group home and the vocational program was what I did straight out of the hospital. I think it helped, thinking about it decades later I’m amazed at how I even did all that. People at the house had various mental illnesses from depression to bipolar to eating disorders. I think I was the only schizophrenic but no one knew., I did everything that was asked of me.
After a year at the group home I moved into supported housing. This was also run. by the same agency, putting 2-4 of us in-house or apartments with a counselor in charge of us. I lived in those houses for 5 years. During my time there the agency set up a work support group that was run by two counselors. Once a week about 6 people would meet in the back room of a Round Table pizza parlor and discuss our jobs and get support from each other with any problems we were having. It was pretty informal, we ate pizza and socialized.
In 1988 I was kicked out of supported housing and found my own studio where I lived for 6 months. Around that time the agency set up family support group. They had two group leaders from the agency and two to three families and we would meet every Tuesday night to discuss our problems as a family and help other families. I guess it helped, IDK, I went there with my family for a year. I was living in a different city than my family so it was always nice to see them Tuesday nights.
At this time I was addicted to crack and when I got kicked out of my studio I went to live with my dad. When I lived with my dad I started attending a therapy group at a local clinic. I don’t like groups as a rule and this was no exception. I remember the restroom was right next to the room the group met in and before group I would smoke some crack in the restroom and then go in the group. Drugs make a person do weird things. But around that time I started attending AA meetings for the first time, I found a few meetings and went to them semi regularly but I was still using. Going to those meetings helped because it planted a seed in my mind that it was possible to quit crack. I. went for about 3 months and I listened to other people tales of recovery and a couple of years later I was exposed to AA again and this time I was ready to take recovery seriously.
After living with my dad for a month the next step in my recovery was I joined a day program. This was run by the county hospital. They almost didn’t let me in because of my history of drug use but I stayed clean for there weeks and this changed their minds and they let me in. The day program was a program for 6 clients at a time with various mental illnesses. We had therapy groups and played board games and cooked lunch and played charades and did other stuff. I was in the middle of a relapse and I guess it helped me to get out of the house. The psyche ward was right next to our day program and a couple of times I walked directly from the day program and checked myself into the hospital. I went there about 6 months.
Then I moved back into supported housing. That stay in suported housing was just one drug fueled mess. I did as much drugs as I could with my roommate and we got involved with these three other drugees. We partied with them at the house sometimes.
Anyways, after I got kicked out of there my dad didn’t know what to do with me and I was going to the hospital occasionally and he put me in a temporary treatment house. It was for people fresh out of the hospital who were looking for housing. That’s where I was reintroduced to AA. I took it seriously this time and I attended meetings and spoke at meetings. this was January on 1990 and that’s my sobriety date so I’ve been clean 36 years. I lived there for 4 months and we had groups and did chores but we mostly had free time.
While I was there I enrolled in another different vocational program. It had some similarities to the other one, they held classes and groups and did mailings. After I was at the vocational group for a few months one day I was standing out back talking to another client and he starts telling me about how the counselor would take a group of clients and drive them to HP to work for there hours. He invited me to go so I took him up on it and asked the counselor if I could go. They said yes so I started going to HP and we recycled cardboard and bailed pallets and some other stuff. About 6 of us went but I was the hardest worker and the counselor told me that they were going to stop taking clients but they were going to hire the top three workers for a position at HP and we would get there on our own and work two days a week. So I started working at HP.
In the meantime I stopped going to the vocational program and moved into a board and care house. I lived at the board and care home for 5 years and I was seeing a therapist and a psychiatrist while I was there.