The Logical Chaos of Schizophrenia
This is the story of two men tied together by brain chemistry.
The first man, Paul, lives out his life confined to a locked ward at Eastern State Hospital in Medical Lake, Washington. Paul exists in almost complete isolation, a safe solitude of his own delusional thinking.
The other man, Robin Cunningham, possesses a résumé listing executive positions with several Fortune 100 and 500 corporations or their subsidiaries, as well as a major Wall Street investment-banking firm. In the course of his career, he participated in corporate acquisitions, divestitures, and turnarounds, and was instrumental in forming four new ventures. The New Jersey resident has been married for 33 years and parents a 22-year old daughter.
Both Paul and Robin have schizophrenia. While Paul lives in the same hospital where Robin's grandfather hung himself and his aunt and uncle lived after their frontal lobotomies, Robin now leads the life of a retired executive writing his memoirs.
The difference in their lives lies in one small, round, pink pill.
In the fall of 1997 I visited Eastern State Hospital to invite the residents of 2North1, a locked ward, to join a writing class I planned to teach on the ward. The residents held a community meeting in the stark, central day room.
"I'm going to be holding a writer's group, not an English class, but a group for writers." My hands shook a little when I spoke. I hoped my invitation came across as cool -- not fake, forced enthusiasm. Hey group! Let's make crafts! I'll bring the pipe cleaners! I tried to be natural, as casual as I could be, in that place with odd energy bouncing off bare white walls.
Paul, a blond man in his thirties, was one among eight regulars that came to the class. He resembled one of those '80s brat pack actors (Anthony Michael Hall?). Now, whenever I think of grief, in my head waivers the image of Paul seated hour after hour, day after day in the hospital day room, still and silent in a straight back wooden chair, staring into the wire mesh covered window. I try to imagine his parents. What are they like? What are their jobs? Do they go to church? Does one have wiry blonde hair and pale skin like Paul? What did they do when the doctor said "paranoid schizophrenic"?
Before I started teaching, I read pamphlets from the National Alliance for the Mentally Ill (NAMI), an advocacy group that I had joined a few years earlier. I learned that in people with schizophrenia, the limbic system -- the gate through which all incoming stimuli must pass -- cannot filter the brain's messages or decide on what an individual should focus. Symptoms include hallucinations, delusions, altered senses, distorted reality, flat or inappropriate emotions, paranoia, fear, withdrawal from family and friends, insomnia, disregard for personal appearance, and disordered thinking. Some people become overly sensitive, feel overloaded, and withdraw inward. Despite the media's obsession with killers such as Ted Kaczynski, the Unabomber, people with schizophrenia are no more violent than other people. Statistics prove that the average person with schizophrenia is more likely to be a crime victim than a criminal.
NAMI estimates that at least half of the roughly 2 million people in the US with schizophrenia receive no treatment. Paul is among those who do receive treatment. He wouldn't look me in the eye or talk directly to me, at first. He never wrote a sentence. When I tried to pull him into the class, he would smile at the ceiling and mumble something about "leaving no proof."
One early October night in my fifth week of teaching, the class met around a small, rectangular table and discussed concrete versus abstract descriptions. The assignment was to write about someone using concrete terms that also revealed that person's inner qualities. Show, don't tell.
As the other students wrote in their notebooks, Paul let me ask him about his "exercise," which undoubtedly was his numbered lists with no words, "no proof." In every previous class, he had continuously numbered his paper from one to ten. He showed me his notebook full of almost identical pages: name and date in the right top corner and lines of numbers from one to ten in tight vertical rows down the lined page. No sentences. No words. At first, he wouldn't tell me what he "wrote." But after a moment or two of me silently observing him, he offered, "Oh, that's the night we wrote about the pictures," referring to the night the class wrote their emotional responses to paintings such as van Gogh's "The Sower."
Paul remembered what we did in each class. He told me about one of the "essays" (the sentenceless kind) he had "written." I probably recognized his style, he said, if I had read the Bible, which he had also written. Soon he was back in his world, swept away on a tidal wave of his words, spoken words that washed him into a place all his own, a place only he could inhabit. "Of course, I didn't actually write it. But I told the disciples what to say. It is my creation, or really my father's." I couldn't follow the rest of what he said and soon, as if he suddenly realized he was saying too much, giving away something he should not admit, he stopped talking.
Later, after I read an example of the night's assignment and asked the students to start, I discovered, by accident, that if I asked Paul concrete questions about the here and now, I could keep him oriented in my reality.
He asked, "What should I write about?"
"I don't know, Paul. What do you like?"
"I like to go outside." He gestured past the double-paned window with the metal laced in the glass.
Questions and answers progressed into a coherent, passionate narrative about camping in the California mountains with his brother and fatherfly-fishing, the smell of pine, a campfire, and cold beer. He arched an eyebrow and turned to catch my eye in a playful challenge upon the mention of beer. As he talked, I was mentally packing up my camping gear, tasting smoky toasted marshmallows, and savoring the metallic after-taste of frigid Coors from a can. Paul and I were camping. He was present for a short time in the happy pre-schizophrenia days, before illness left him absolutely alone, left him making wordless lists on a hospital ward.
On Sunday, April 4, 1956 at 1:30 in the afternoon, the Cunningham family of Spokane, WA drove along the Columbia River in Oregon. Robin Cunningham, 13, was "hunkered down in the back of the Packard so I could not be seen from the front seat." Moments before, Satan had suddenly spoken to him for the first time.
"Your father is God," said a clear, but recognizably evil voice. Having been raised in a devout fundamentalist family, Cunningham knew immediately that this conversation could lead to eternal damnation. He writes in the first chapter of his memoir,
I was mentally engaged in a continuous, protective denial of the untruths that Satan was mouthing directly into my mind, so I would remove him from my heart. Having no experience with this, I decided on a physical strategy. I would scrape him out, and then off the surface, of my heart. I began to tear at my chest with my thumb and fingernails in an effort to dislodge and repel him. I knew that my gesture was largely symbolic. Nothing as simple as this pathetic act could counter the power of Satan, but it seemed then to be the only weapon at my disposal. It was at least an indication to God of my abhorrence of Satan's claims.Thus began Cunningham's 10-year battle with Satan and his "minions." Within two weeks of that afternoon, he and his family faced a different life.
"Soon I had a full range of behavior: superstitious behavior, ticks, hallucination, delusions of grandeur, paranoid thoughts. [It] happened quickly, within a week or two. I totally disabled. My parents first took me to a minister, who couldn't help. Then they took me to a psychiatrist and I was quite fortunate in the psychiatrist that they picked."His parents went to Dr. Levy, a Spokane psychiatrist who had treated Cunningham's aunt and uncle who were both housed at Eastern State Hospital. Dr. Levy, a doctor ahead of many of his peers at the time, believed schizophrenia to be physiological in nature. He knew that he just had to find the right drug to act on the diseased neurotransmitters in Cunningham's brain.
Cunningham remains extremely thankful for Dr. Levy's care. According to the National Institute of Mental Health (NIMH), early intervention and medication (two factors in Cunningham's case) improve the long-term prognosis for many people with schizophrenia. Despite popular beliefs, while there is no cure for schizophrenia, it is a highly treatable disorder. In fact, according to NIMH, the treatment success rate for schizophrenia averages 60 percent. Studies show that after 10 years of treatment, one-fourth of those with schizophrenia have recovered completely, one-fourth have improved considerably, and one-fourth have improved modestly. Fifteen percent have not improved, and 10 percent have died, usually by suicide or accident.
Furthermore, doctors at the NIMH state that "it is critical that people with schizophrenia stay in treatment even after recovering from an acute episode. About 80 percent of those who stop taking their medications after an acute episode will have a relapse within one year, whereas only 30 percent of those who continue their medications will experience a relapse in the same time period."
However, finding the right medication remains the challenge in most cases. It took Cunningham and Dr. Levy 10 years to find the "silver bullet" for Cunningham. Meanwhile, Cunningham went on with a troubled adolescence. He attended North Central High School in Spokane while hallucinating constantly. He remembers hearing voices every day, almost non-stop. In an effort to combat against the continuous onslaught from Satan, Cunningham developed a very methodical system of ritual behaviors aimed at denying the blasphemies Satan mouthed into his head.
I began to avoid stepping on cracks in the floor, the sidewalk, and everywhere else I walked. This made for an erratic gait at best. I was constantly shortening or lengthening my strides, stopping and starting, turning this way or that, all to step over cracks. And, as I soon discovered, there were cracks everywhere. What's more, if I did step on a crack despite my best efforts, the effect of this failure had to be cancelled out. I made a second unilateral bargain with God. If I tapped the toe of my right shoe twice on the floor behind me immediately after stepping on a crack, it would nullify the effect of my error. It had to be my right shoe, though, because it was symbolic of sitting on the right hand of God. Within a week, I had begun to wear a hole in the toe of my right shoe. My mother took my shoes away from me.While these behaviors embarrassed Cunningham's supportive parents and ostracized him from his peers, the rituals seemed not only logical, but completely necessary to him. "I had decided that Satan was trying to get into my heart and destroy my faith. So I had to keep him out. I didn't know how to do this, so I decided on the physical strategy [clawing his chest]. Knowing that it was only symbolic, at least I was indicating to God that I wanted Satan out. Stepping on cracks revolved around the same thing. It all revolved around maintaining control over Satan and his minions, which I called my tormentors. I had these various symbolic behaviors that were intended to maintain control.
"People think schizophrenics are wildly mad and that there is no logic to what they are doing," Cunningham explains. "In truth, schizophrenics are quite logical. My goal with the book is put readers in the mind of someone with schizophrenia."
Constant hallucinations and the ritual behavior damaged Cunningham's ability to form relationships. "Basically, I lead two lives," reports Cunningham. "I had an internal life where I perceived myself as battling Satan, trying to preserve my soul. Then I had an external life where I dated girls and did other things." After missing half of his freshman year at North Central, he was able to lead a semblance of a normal life despite constant hallucinations due to "brute mental force" and instruction and encouragement from Dr. Levy. He was even elected to leadership roles and achieved scholastic honors during high school.
"Dr. Levy often said, 'Do it anyway. Do it anyway.' I felt totally incompetent, but learned to do things like dating anyway. I would want to do things, but felt insecure. My emotions wouldn't allow me to try. Dr. Levy encouraged, 'Do it anyway and the emotions would follow.' I'd try, be afraid and soon learn that he was right."
Cunningham worked at Western State Mental Hospital outside Tacoma as a student intern during his junior year of college. At the time he didn't divulge to supervisors that he had schizophrenia. However, staff members gave him and the other student interns psychological evaluations. His test showed he had schizophrenia. The psychologist told him it must be a fluke. Cunningham worked one-on-one with patients on a locked ward.
"Some of the patients hadn't been out in over a year. We took them for walks. They were elated. There was a policy that only allowed the residents to shower one day a week, Saturday mornings at 7:30. We got that changed. Many men had not had haircuts. They had a barber chair and such, but were dependent on a volunteer barber, which they had none. So I cut hair."
"I knew intuitively how to treat these patients because I knew what was going on. I knew when [someone] was hallucinating and what that was like. I knew what to do and what not to do because I'd been in that situation. One man with whom I worked hadn't spoken in a long time. I got him talking and playing cards. He was still hallucinating. But he could function somewhat."
During high school Cunningham used various medications such as tranquillizers and anti-depressants, but it was not until he entered graduate school that Dr. Levy found the right drug for him. In 1965, after finishing his bachelor's degree at the University of Washington, Cunningham moved to North Carolina to attend graduate school. While in school, he become extremely depressed and was hospitalized. Doctors put him on Thorazine. Thorazine interfered with his memory and made school for the first time very difficult for the extremely intelligent Cunningham. He decided to drop out and returned to his parents' home in Spokane. They sent him once again to Dr. Levy.
Dr. Levy tried Etrafon, then a new anti-psychotic. Etrafon combines a tricyclic anti-depressant with an anti-psychotic. "Taking Etrafon was like someone flipped a switch," reports Cunningham. For the first time in 10 years the hallucinations suddenly stopped. Side effects of the drug can range from drowsiness to spasms to seizures. Over the 36 years that Cunningham has taken Etrafon, he has suffered little to no side effects.
Shortly after beginning life on Etrafon, Cunningham met his soon-to-be-wife and went on to complete an MBA. Within two years of finishing his degree, he was made vice-president of the company for which he worked in San Francisco. His successful business career had begun.
Recently I spoke with my successor who taught writing on the ward at Eastern State Hospital. Immediately I asked her about some of the students I remembered. She had seen Paul on the ward. He didn't attend her class. By her description, I got the feeling that life had changed very little for him over the last few years. I have no way of knowing when, or if, doctors will find a pill for Paul. I remain hopeful.
Robin Cunningham is grateful for the unexpected gifts of insight, compassion, and sensitivity that schizophrenia provided him. He expresses gratitude for his parents, the late Dr. Levy, and that little pink pill, Etrafon, that transformed his life and kept him from isolation at Eastern State Mental Hospital like his grandfather, aunt and uncle. He hopes that one day his writing will help folks understand the logic in the schizophrenic chaos of people like Paul and the others I taught at Eastern State, for he knows that is it only through our stories that we connect, find meaning and thrive.
The long quotations in this article are taken from "Once Around the Prickly Pear," Robin Cunningham's yet-to-be published memoir on battling schizophrenia. Anyone with questions or interest in Robin Cunningham's book may contact him at InPricklyPear@aol.com.