The perspectives on schizophrenia I can provide are not those of a psychiatrist, psychologist or licensed clinical social worker, but rather a consumer and family member. I have walked the walk on both sides of the street. As such, I can speak with experiential authority. It is my objective to share with you, as best I can, what my experience with schizophrenia has been like on a day to day basis, i.e., to compare notes with you. Equally important, I will also make observations about being a family member and advocate based on my own experience. Any observations or comments you choose to make in return will be of great value.
In my recent submissions I have been presenting a short series of blogs portraying the widely varying reactions of others to the fact that I have schizophrenia. These have dotted the calendar from the time I first developed this brain disease in 1956 until the present day. In this blog I will again illustrate the reactions of others, especially the reactions of a single fellow traveller. The encounter took place in the summer of 1963, seven years after I had developed schizophrenia, and in the most unusual of circumstances.
The following is a recreation of my own experience and, except for my own, all names have been changed. * * *
Although I was still actively psychotic, by my junior year in college Dr. Levy had taught me to hide my illness. For the summer quarter of 1963, between my junior and senior years, I had been awarded a Western Interstate Commission for Higher Education Fellowship entitled “A Work/Study Program in Mental Illness.” During the first week of June, all the fellowship participants met at the University of Oregon for orientation. We each took the Minnesota Multiphasic Personality Inventory (the famous "MMPI") with the promise that at our debriefing in August our scores would be interpreted for us. Upon completion of orientation, I was assigned to Western Washington State Hospital where I worked as a "student therapist." None of the professors, doctors or hospital staff knew I had schizophrenia.
"I can’t believe the doctors have asked you to work with John," Henry, the day shift orderly, said. "He’s got schizophrenia. He just sits there in that same chair all day, every day, staring out the window at who knows what. He hasn’t said a word since he arrived over two years ago. He’s a lost cause."
"There must be some reason," Bess, the registered nurse, said. "Although I can’t imagine what it might be. See if you can get him out of his chair to do something. Get him to socialize."
The ward had a battered old poker table which I found in storage when looking for ways in which I might get John more involved in the world around him. One leg was short and had to be propped up with books, but I used it anyway to set up a poker game from 2:00 to 3:30 p.m. every day. John and I had permanent seats at the table. Any other patient could join the game by claiming one of the remaining four seats which I made available on a first come, first serve basis.
At first I had to lead John, much like a blind man, to and from his chair at the table. He always sat with his back rigid, staring straight ahead. The other players and I often had to wait for him to play a card, sometimes for 20 minutes or more, until he had completed what I knew was an active hallucination. I could tell he was hallucinating most of the time. The resultant delays in the game generated a lot of complaints, but the table was always full because there were no competing events. In addition to being slow, John selected the cards he played by no rational means that any of the other players or I could determine.
We had played for about two weeks when an altercation between John and one of the other players occurred. At the time I was in the nurses’ station getting tobacco. All the men on the ward smoked, including John, rolling their own with donated cigarette papers and pipe tobacco which I dispensed.
I was never quite sure of the cause of the incident but assumed it involved the long waiting periods. John had become outraged, which he had never done before, and turned the table over. Although he had always been docile in the extreme, Bess decided he now had to be sedated. The doctor placed him on 600 mg of Thorazine a day.
John was highly sedated for the next three weeks. During the third week, I began to notice a subtle difference in his play. His decisions about how to play his hand steadily improved and quickly became sophisticated enough to suggest that he was an experienced player.
One afternoon, as I was picking up the cards and chips after our game for the day had ended, John turned to face me. This surprised me, but not as much as what occurred next.
"You know I only play because of you," John said in strong and clear voice.
I frantically sought some turn of phrase that might keep him talking, but could think of nothing.
"And why is that?"
"You’re not like the other staff."
"I can’t imagine why you would say that?"
"You know why," he said.
"No, I really have no idea."
"I play because you’ve got the curse. I knew it the first time I saw you. It’s in your eyes."
"What do you mean?"
"You’ve got schizophrenia. But don’t worry, I’ll never tell anyone."
John’s medication was continued and before the summer was over he had graduated our poker game, moving to an open ward where he was allowed to spend time touring the hospital grounds unattended. We often met and talked at length on his daily outings. He told me his life story. I have never told anyone.
At the fellowship debriefing at the end of the summer, as promised, the MMPI results of each participant were interpreted by a resident psychiatrist. I was the last to be called.
"This has never happened before," the doctor said. "I’m so sorry. It’s clear that we need to get to the bottom of this."
"Get to the bottom of what?"
"As I said, it’s never happened before. Heads are going to roll."
"Get to the bottom of what?"
"Somehow the scoring of your exam has been corrupted. It means I can’t interpret the results."
I thought the doctor was being a bit melodramatic. As I got up to go, he moved to block my exit.
"This must be resolved. The credibility of the MMPI is at stake. Would you be willing to take the test again? Although it would be highly irregular, I would call and discuss the results with you by telephone."
"How can you tell the exam results corrupted?"
"It’s most embarrassing, so you must promise not tell anyone about this."
"All right," I said. "I won’t discuss it."
"Don’t get upset, but your score on the exam indicates that you have an extremely strong tendency toward schizophrenia."
I did not take the exam again, despite the doctor’s insistence. But I have told a great many people about the incident.
Your challenge for this blog is to determine which was most important to John’s recovery, his medication or his increased level of socialization. Please enter your thoughts about this in the comments section below.
You will now find among the comments to my previous blog my own thoughts concerning the reactions of the doctors that I "interviewed."
I urge you to continue reading this mini-series and to post your responses to the questions raised. It will be interesting to see if we all arrive at the same or similar conclusions.