First person account: Schizophrenia, medication, and outpatient commitment**

Schizophrenia Bulletin, Vol. 27, No. 1, 2001

By Valerie Fox

Having suffered from schizophrenia for the past 30 years including a period of homelessness I know the complexity of the illness.

When I was a young woman in my twenties, working for an airline and traveling throughout the world, my life was wonderful, exciting. I was part of the theater scene in New York, liked the fabulous restaurants there, and was thoroughly enjoying my life.

One day, however, my life changed drastically. I was diagnosed with schizophrenia, hospitalized, and given medicine. When I was healthy enough to leave the hospital, I was overwhelmed. I could not believe the medicine was good for me, because I had never felt so depressed and lethargic as I did while taking the medicine. After a few months I decided to stop taking the medicine, believing, as my psychiatrist did, that I would be fine, that I had been struggling with the transition from teenager to young womanhood, and that my “breakdown” would probably never recur. This was the thinking in the 1960s. There was no talk then of body chemistry being involved with schizophrenia.

I did go off my medicine about six months after my first episode. I felt great: I had my alertness, my good sense of who I was; I was not depressed; and I looked forward to working again. Instead, within weeks I was again hospitalized. This time I was sent to a long-term care facility, a state hospital. During this time I decided to take charge of my life. I realized that when I was taking the medicine I was able to stay in the community; without the medicine, I was institutionalized. Psychiatrists at that time believed that the patient’s environment was the cause of schizophrenic episodes. I decided not to believe that. In my naive way, it seemed to me that a pill kept me healthy; without that pill, I became mentally ill. I determined I would find a way to cope with taking the medicine, because I did not want my life to be a revolving door from society to the hospital and back again. I decided to try to work with my new psychiatrist, finding a way to take my medicine so it would not affect me during the day. I was able to take most of my medicine during the evening and work during the day.

While in remission I met a good man and discussed with my doctor the feasibility of my getting married and having children. In 1966, there was no evidence that body chemistry was responsible for schizophrenia; therefore, the possibility of passing the illness to children was not considered. I did marry and gave birth to two children.

During the course of the marriage, if we had an argument and I got angry, my husband would say, “Valerie, are you getting ill?” I wasn’t getting ill, but my illness was a controlling factor for my husband to use over me. As this kept happening, I knew the marriage was over for me and that I would leave it as soon as my daughters were a little older. I did leave and retained custody of my two daughters. For 14 years, I remained healthy and was not re hospitalized. I took my medicine and went to psychotherapy. I had gained a relative peace, acceptance, and a good level of happiness.

Then came a dramatic schizophrenic episode. It started when someone began harassing me in the middle of the night. This harassment culminated with the person cutting my bedroom screen. I was terrified that because I slept so soundly as a result of the medicine, I would awaken one night with a stranger in my apartment. I decided to stop taking my medicine against the advice of my doctor. I had to do what I thought was responsible, and that was to be semi-awake in case an intruder entered my apartment. The police finally staked out my apartment and apprehended the person who was harassing me, but the damage was done. Because I was an adult and not acting out, I was free from forced hospitalization. I did not know I was ill. My ex-husband took our children, which I thought was kidnapping. No one would help me have the children returned. I must have been visibly ill, although I was not aware of it.

I went deeper and deeper into schizophrenia, ending in homelessness for a two-year period. During this period of homelessness and mental illness, I faced the dangers of street living, including being beaten and raped, almost freezing to death, and being malnourished, but I was free. In that state, freedom was what I wanted. My imaginary friends would explain all the tortures away, saying that I had to learn to be strong, or that the brutality occurred because I was mistaken for someone else. This odyssey ended one day when I decided to do whatever it took to have the good life I had known. I still did not know I was ill, but I did associate taking medicine and being hospitalized with living as I had previously, before homelessness.

One day, I summoned every bit of strength I had and did not back away from institutionalization. Fortunately, the psychiatrist I saw during the admittance process treated me with empathy, compassion, and respect. I trusted him, and, therefore, did not back away from my decision to seek treatment. I remained hospitalized for a six-month period, three months of which were spent waiting for abed in a housing program in the community.

After I was out in the community again, I sought out the psychiatrist who had treated me during most of the time I suffered from schizophrenia. Because I did not have the stresses of being a single parent with two small children, I did not need the amount of medicine I had needed previously. Taking my medicine became easy for me. I took one dose at night before going to bed. This way, during the day I was not tired and could function well, holding a good job. I reunited with my children and built another life for myself. I still see a therapist and can call between visits if I am very upset. I don’t abuse this arrangement, and it has served me very well.

This brings me to outpatient commitment and being monitored in a program such as the Program of Assertive Community Treatment (PACT). Because I have been monitored for most of my adult life, and am grateful for it because it helps me not to slip into homelessness again, I am a proponent of outpatient monitoring with guidelines that allow a person to live in the least restrictive environment, as I have been able to do all of my adult life. I firmly believe that if a person is rational and wishes to live in a homeless state, that is his or her right.

However, if a person is living in a state of fantasy and imagination(voices and hallucinations) and is lacking free will, I believe he or she should have to receive treatment through outpatient commitment until he or she is again living in reality. If ongoing linkage is indicated because the person has proven to be at risk for entering a schizophrenic state (usually from lack of medication compliance), I believe the person should be committed on an outpatient basis to be able to live in society. I don’t think a person without free will should have the right to say, “I want to stay in this state and live in society.” A state ofschizophrenia is one without reason. I don’t think it is fair to the person who may never again know reality if left in this state of schizophrenia, nor do I think it is humane or responsible to society.

[Reprinted from Schizophrenia Bulletin Vol. 27 No. 1 2001, by permission of the author.]