My fascination with schizophrenia began at a very young age. At age 8 was sitting in a parked car with a family member, who shall remain anonymous. That person asked me “do you hear those voices?” I said “no, what voices?” The response was “those little kids playing, do you hear them?” I strained to listen, and only heard complete silence. I wanted to hear the children playing, something on this person’s face made me want to hear the children. After listening, and even trying to imagine hearing children playing, I had to admit that I did not hear the voices. I was met with a facial expression that embodied fear, anger, frustration, and a plea…for what I do not know. That face is seared into my mind more than two decades later.
I went home and asked my mother who hears voices that other people cannot hear. She replied that she thought people with schizophrenia heard voices. I immediately went to work with the dictionary, the encyclopedia, and my mother’s medical books. This was, of course, before home computers and the Internet were widespread. I was hooked, and determined to learn as much as possible about this mysterious brain disorder. That family member continued to display signs of psychosis over the years, including seeing bugs crawling on their skin. I now know that this person does not have schizophrenia, but has experienced intermittent episodes of psychosis. In the future I will write another post about other causes of psychosis.
I remained fascinated with mental illness, the brain, and particularly schizophrenia. I felt, and continue to feel, a deep compassion for those who suffer from this disorder. I majored in psychology during my undergraduate education, and my first job upon graduating was in an adolescent residential treatment facility. My first day was spent reviewing charts, and I read every single word documented in two particular charts, which were two teenage boys with a diagnosis of schizophrenia. This was my first time meeting someone with the diagnosis, and I must admit that I was fearful.
I developed a lasting relationship with one young man, and worked with him every chance I got on developing insight into his symptoms, helping him to discern what was reality based and what was part of schizophrenia. I could not get the other young man to talk, or even look at me. He sat huddled in a corner most hours of the day with a blank expression on his face. One day I decided to try a different approach and asked him to write a story. I cannot remember the topic I gave him to write about, but for the first time, he responded to me. He took the pen and paper and began to write frantically. My jaw dropped when I read the disorganized, tangential, violent themes on the page. It provided a glimpse of what he was contending with there in the corner day after day.
I eventually began working with adults in various settings. My role was to “rehabilitate.” I worked with adults in the hospital, at home, at work, on the streets, in homeless shelters, individually, and in small groups. While I worked with a variety of diagnoses, I remained most drawn to those with schizophrenia. I was always happy to take the most difficult cases, and didn’t even mind venturing under soggy bridges filled with frogs and crack pipes.
Through the years I have found two discernible groups of people with schizophrenia: those who have insight into their disease, and those who do not. Those who have insight seem more likely to live a more normal life, while those who do not, tend to be fully enveloped in the world of psychosis, delusions, or disorganized thoughts. I have had lengthy conversations with individuals who fall into both categories. Those with insight have universally claimed that having schizophrenia is like being in hell. I remember talking to one man who I would have categorized as not having insight, until one day he looked at me and said “I’m just a schizo, and I can’t stop that terrible music.”
Another young man that I worked with had a great deal of insight, when he was taking his medication. He embraced his schizophrenia, and felt that it fueled his creativity. We worked together unrelentingly to pull his life together. He got his dream job of a barista, went to open mic night at a cafe to read his poetry, and found a roommate who was also a love interest with whom to share an apartment. One day he came into my office looking wild-eyed. He said that he couldn’t swallow his medication, that his throat closed every time and caused him to gag and vomit. I put in several messages to his psychiatrist, to see what options we had, whether it be to grind the pills, or if there was an alternate form of the medication. This occurred during my last few days working for this organization before moving to another state. As I handed over my case load, I asked the other therapist to immediately follow up with this young man, as I knew he was headed down a slippery slope. Several months later I received an email from the therapist saying that the young man had hanged himself. These are the tragedies of schizophrenia. Fortunately, there are some success stories as well.
I think I have seen as much of the dark depths of schizophrenia as one can see, without actually having the diagnosis. There is much more to share, including the treatment process, the decompensation process, etc. More to come later.
