Schizophrenia is a very isolating disease. The positive symptoms; hallucinations and delusions, are not shared experiences. The expression of these symptoms tend to frighten and drive away those closest to the person experiencing them. The negative symptoms: lack of interest in the world and a diminishment in the ability to experience pleasure, further separate the person from their surroundings. In order to be successful in treatment, an individual must have someone on their side. This unconditional support is often the basis for positive outcomes in treatment. Families should be natural allies, but may end up being seen as enemies as a result of symptoms. Friends are hard to maintain and professionals who may be caring have to maintain a distance. However, support must come from somewhere.
As we recognize schizophrenia for what it is, a brain disease, we must also recognize that we can’t abandon people because they have symptoms that are difficult or unpleasant. This story speaks to the kind of support that creates a successful outcome.
The Story
“The kid is just standing there in the main library, not moving, not really saying anything. When I try to get him to come with me or do anything, he just looks at me sideways with a smile on his face. When he says something, it’s just gibberish. The sergeant says you need to come up and take a look at him. He’s not really causing any problems, breaking the law or anything, no danger to self or others, just out of it.” I put down the phone and drove to Cornell.
He was halfway down an aisle in the stacks. He was moving his head up and down slowly, in a jerky motion, the way a parrot does. The cop had gone to the other end of the aisle to try to control the situation if things turned to crap. Another cop was behind me. No one knew the young man’s name, but he looked like a student. White kid in his early twenties, 5’10” short brown hair, average build, wrinkled jeans and a tee shirt. His hands and arms were also moving in a slow jerky motion almost like Tai Chi. “Hey”, I said walking up to him, but not within arm’s reach. “I need to talk to you. What’s your name?” He looked at me and smiled. I continued, “People are a little concerned about you. You’ve been standing in this same spot for about five or six hours and you don’t answer when people try to talk to you.” He didn’t look at me but began to speak, “You or not you, to be or not to be.” When he finished he started laughing, then tilted his head up and to the side, obviously listening to voices that only he could hear. “I’ll be right back,” I said as I went to the cop behind me to make a request. I returned to the young man and attempted to engage him in a variety of ways while I waited. Nothing worked.
Ten minutes later an EMT showed up with a gurney. I rolled the gurney between the shelves and parked it next to the young man, locking the wheels with my feet. I pulled down the top sheet and said, “It is very important that you lie down on this. Your legs are sore and you are very tired. Your back must be stiff too. If you lie down on this, you will feel much better. Take two steps and climb up on here”, I said, patting the bed. The jerky motion stopped and he took one big step and settled his rear on the gurney, then turned to lie flat, his arms at his side, eyes staring at the ceiling. I pulled the sheet over him and buckled a belt over his chest, pinning his arms. The cops and EMT’s took over, adding more belts and rolled him out the door. Before they put him in the ambulance, an officer patted him down and got a wallet from a front pocket. His name was Louis and he was a junior at Cornell. Before I left campus I went with a cop to his dorm to talk to his roommate. I wanted to get as much information as I could to give to the hospital for assessment. The emergency room folks could call his parents.
“I haven’t seen him for a couple of days. We’ve been roommates for two years. He’s a good guy, English major. But lately he’s gotten really strange. Sometimes he just stares into space or he’ll disappear for a day or two. At first I thought maybe he had a girlfriend, but I don’t think so. We really hang out with different people. As a matter of fact, he doesn’t really hang out much at all. The first couple of years he was doing club volleyball, then that stopped. I don’t know how he’s doing in his classes, but he did pretty badly last semester. I hope he doesn’t flunk out.” He went on to say he didn’t think that Louis used drugs and that he hardly ever drank. “He always worked hard and kept to himself. You were more likely to find him in the library on Saturday night than at a bar. But one thing he does do is attend that little church on the edge of college town. I went with him once, not holy rollers, but sort of fundamentalist. It wasn’t for me, so I never went again.”
Louis was from Queens, in New York City and it seemed that this was not the first time he appeared to be having a psychotic break. The previous summer he’d been sent to the hospital after walking among traffic on a major roadway. At the time, his parents were convinced that someone had “slipped something into his drink.” According to the record they were unaware of any mental illness on either side of their families although on the husband’s side there was strong evidence of substance abuse.
He was referred to our clinic from the hospital after a two week stay. Mental health services at Cornell are very good, but they tended to defer to our greater experience and services when a person has a chronic psychiatric illness. When we first met, Louis was somewhat coherent. However, it was clear he was very symptomatic with what are known as positive symptoms like hearing voices or feeling controlled by others. Much of our initial conversation was interrupted by Louis cocking his head to one side, concentrating on the words the other voice spoke to him. He was a very smart, articulate and pleasant young man who agreed that he needed a medical leave from the university. He described a family situation that was less than ideal and decided to stay in Ithaca.
Louis took medication like many other patients at our clinic. As the unpleasant symptoms began to diminish, the unpleasant side effects of the medication began to be a problem. Feeling better often made things worse. He started to take medication on an “as needed” basis and it did not work very well. Missed appointments became common.
I saw him walking slowly down the street one day and approached him. “I want you to come and see me,” I said. “I see you and I see beyond you,” he replied laughing. As we walked, he made eye contact and bowed slightly to the people walking by. “My subjects,” he explained. In fact, his contagious smile and nodding elicited a similar response from everyone we passed. “You need to start taking medication again!” I stated emphatically. “That’s right,” he exclaimed pointing in front of him. “That’s right!” he said again. It took me a moment to understand that he was pointing at a line of three or four cars in a turning lane in front of us, their right blinkers on. That afternoon he started an injectable medication that he responded well to.
Two weeks later, Louis showed up at my office with a middle-aged man dressed like a golf pro. “I’m Pastor Johanson, Gary Johanson. Louis belongs to my church. He’s been a member for two years. He’s told me a little bit about his problems and told me about you. Last Sunday during service he spoke about some of the things on his mind. Not all of it made sense. I wonder if there is a way we can help.” I asked the pastor to leave the room for a moment to make sure Louis wanted this man involved. When the Pastor came back in, I said to him, “Louis has been having a difficult time following through on his treatment. He certainly needs encouragement to be fully engaged in the process.”
On Sunday, a month after meeting with Louis and his pastor, I found myself at the podium in the front of their church. Nearly eighty people had stayed to hear my talk about mental illness and treatment. Pastor Gary had purchased ten copies of Surviving Schizophrenia, by E. Fuller Torrey, and people agreed to read it and pass it on. Louis sat next to the pastor in the front row. His smile was less infectious, but more genuine. When my talk ended, Pastor Gary offered juice and cookies in the church basement. But first he asked us to bow our heads, “Merciful God, let us join together to help and heal each other.”
The Stories
The stories are my remembrances. Each of them is based on a true event in my work for Tompkins County Mental Health in Ithaca New York. I have changed the names of every client, patient and co-worker except for Beau Saul, of the Ithaca Police Department, who I was fortunate enough to have as a partner. When confidentiality demanded it, I have changed details. The dialogue is my reconstruction of what was said at the time. I have felt honored to be let into the lives of so many individuals over the years. Their stories are a gift I have been given. Please enjoy them in the spirit with which they were written; to educate and inform.
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