Now I Can Hear Birds (Recovery from Mental Illness), 1990s, by John Schleimer
From MemoryArchive
Who: John Schleimer What: Recovery from Mental Illness When: 1990s Where: New York, New York
I'm 38 years old and in recovery from a serious, long-term mental illness. I've been hospitalized over 35 times, making life for me and my family awful... often. I'm told I have a psychotic condition known as schizo-affective disorder and that I've had it for over 18 years, about half of my life. I've taken many different medications from Stellazine to Haldol. The meds would stabilize me for a while then have to be discontinued because of the side effects -- everything from Tardive Dyskinesia to kidney problems. Finally, I was having so much trouble that my parents convinced a doctor to try me on Clozaril. At that time, few doctors wanted to use it because of the inconvenience of blood tests and lab and pharmacy coordinations.
My doctor was an old-fashioned man who thought that severe mental illness was self-induced as an escape from the horrors of life. Nothing in my life could come close to the horrors in my illness -- so much for that theory. He finally did put me on Clozaril, but still felt that talk therapy was more important and encouraged me to work through my problems and he would congratulate me when I could get by on less medicine. I'd had several doctors before who were competent (I suppose), but who had given up on me when I wouldn't cooperate about the other older meds. I hated the stuff because of the uncomfortable side effects and I didn't think I needed them anyway. When I found out how expensive Clozaril was, I thought it was a huge rip-off and that it was just another large pharmaceutical company charging too much money for a medicine that people desperately needed. This made me angry so I decided to fire my psychiatrist and stop taking any medications at all. I found out later that going off Clozaril that fast could cause a more serious psychosis to happen. I was interested in alternative medicine such as acupuncture and herbal remedies. I remember thinking that these were a very good deal -- only $7 for a two weeks supply, no harmful side effects and no doctors to bother with.
I started taking this new treatment. My mind seemed clearer, my thought patterns seemed less intense and I thought I had fewer delusions. But very soon, I became very much worse -- totally psychotic. My thoughts were racing. I was hyper, nervous and extremely disoriented.
I lived at a residential YMCA. I only left my room when I needed to eat or go to the restroom. I was hallucinating constantly and thought that I was communicating with rocks, trees, plants, ghosts, extraterrestrials, and people miles and miles away.
My family and friends knew what was happening and were trying to get me to go to the hospital. They were very upset, but I honestly believed I had supernatural powers, that I was completely normal and they should just leave me alone. No one could convince me, and legally no one could force me into the hospital because I wasn't a danger to anyone and I was still somewhat able to take care of myself. I ate occasionally, but mostly I just communicated with the voices.
Finally, I got so bad that the staff and the other tenants became alarmed and called the police. By this time I was taking no medicine at all and was very much out of it. The police brought along a psychologist who asked me some questions and told them to take me to the hospital. They handcuffed me, escorted me to the patrol car and carted me away. This was the first time I hadn't been taken in by my parents or by one of my own doctors. For the first time I was going in as a county patient and it turned out to be very good luck for me. I had usually been released too soon because my Medicaid coverage wouldn't approve a longer stay.
While I was staying at the county hospital, I would not take my medicine. I managed to do this by holding the pills in my mouth until the nurse was gone -- a common ruse called "cheeking it." A week later I was put in restraints and given a shot of medicine. My stubbornness and lack of faith in the meds caused me lots of misery and grief.
During my stay in the locked ward, I was taking a combination of Prolixin and some other medication that was not working. After about six weeks of not getting better I was switched back to Clozaril. My dose was increased way beyond what I had taken previously. My doctor was a young East Indian woman who had seen Clozaril work for many patients, had current training and didn't think my illness was simply an escape. Slowly I began to hallucinate less and calm down. I became more cooperative and could carry on a conversation. My ability to take care of myself improved. I started taking showers regularly and even changed and laundered my clothes. I began going to art therapy and exercise classes and could go out in the yard to smoke. I was still in a locked ward, but I could now have visitors for longer periods of time.
I met a very nice woman who told me that when she didn't take her meds she would become paranoid and stop wearing her clothes. Twice while she was there she refused her meds and walked out of her room with nothing on. Her extreme behavior disturbed me. Here she was a fine person telling me how the meds would work and keep her from being paranoid and then she was not taking them herself. It was through her struggle that I really began to see what was happening to me.
Over the years I had met a lot of people who believed that having the right attitude or the correct way of thinking would just cause me to "snap out of it." Or that I was weak because I couldn't control my thoughts. Or that I shouldn't take the medications because the doctors and the pharmaceutical companies were just trying to exploit sick people and take their money. Many of my friends and acquaintances spent much time and effort trying to talk me out of what was best for me. They probably meant well, but they weren't educated about mental illness and they were simply wrong. I realized that no kind of magic or religion would cure me. I realized that I had never seen anyone yet who had gotten better without chemical therapy of some kind.
After two and a half months in that county hospital I felt that I was ready to be out on my own, but my doctor had other ideas. She wanted me to get better and get used to taking the medicine regularly. She was right again. I was moved into a supervised adult residential facility and was able to continue to get the kind of care that I needed. I was now a county patient. I could be treated for a longer time. During my earlier hospital stays I had been released just as soon as I became stable or sometimes sooner and I never got the chance to know what it felt like to have my brain back.
During my stay at the community-based, supervised residential program I made steady progress. I went through the programs and levels and earned passes and eventually was spending weekends with my family. I was there for three months and was finally ready for the next step, a board and care facility.
Two years later, after gradually getting better I was able to leave the board and care facility. For the last nine months I've lived with my parents. I now realize how much better I really am. I've been able to develop some will power and focus. I stopped smoking and have started exercising regularly. The exercise is necessary because one of the side effects of Clozaril is weight gain. I work as a volunteer two full days a week and do lots of chores at home. I clean, cook, paint, repair, and keep pretty busy. I can watch a TV program and remember what I've seen. This may not seem like much to some people but it's a major improvement for me. It's also a major improvement for my family. My brothers were only 10 and 13 when I became ill and now they are 30 and 33 and we really enjoy each other. My parents were extremely helpful and always there for me. We can laugh and share experiences and be a family at last. No more tears, dread or sorrow.
I still need to get better. I'm not able to concentrate for long periods of time and I frequently feel overwhelmed. Sometimes it's hard to get motivated and some days my meds really make me feel sleepy, but there's no comparison between my problems now to the ones I had being psychotic. One of the wonderful things is that I can hear the birds and the wind when I'm outside. All the voices in my head are gone completely. I'm more aware each day of what's going on around me. I think I can stay this way because I know now that I will always take my meds, no matter what. Even if someone tries to tell me that I don't need them or that I can do it on my own or whatever. The reasons can go on and on forever. The bottom line is that I know I must take Clozaril to have a future, period!
Reproduced with permission from New York City Voices, where you will also find more information about recovery.
