Schizophrenia Bulletin Advance Access originally published online on May 4, 2006
Schizophrenia Bulletin 2007 33(3):657-660; doi:10.1093/schbul/sbj073
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Grand Rounds
"Would you be willing to be interviewed for Grand Rounds? I'm going to be talking about recovery from schizophrenia, how it is defined, and how frequently it occurs. Partway through my presentation, someone else would interview you."
"Yes, I'm willing," I said.
A professor in the School of Medicine at a large midwestern teaching hospital, Dr. Gingerich presented Grand Rounds once a year. He posed this question at one of my regular appointments. Dr. Gingerich was a man of medium build, but he was tall and had perfectly neat brown hair. As he sat across from me near a desk, his expression combined the stern look of a disciplinarian and the seriousness of a scholar.
"If it's all right with you, I'd like to prepare some notes beforehand," I said.
"Dr. Chapman, who is Vice Chair for Clinical Affairs of the Psychiatric Department, will be doing the interview. I will ask him for an overview of his proposed questions and get back to you," Dr. Gingerich said.
During the next several weeks, I typed up what I might say and sent it to him. Dr. Gingerich said it was fine, but I worked on it some more. I changed and lengthened it considerably. I also practiced reading it out loud, speaking into a mini-cassette recorder. Playing it back, I could hear what parts needed work.
I wondered how the Rounds would go. My audience would be mainly psychiatrists, psychiatric residents, and medical students who viewed mental illness from the disease (biological) model. Will I be able to communicate my view of recovery? Will I be allowed to say what is important to me? Will they hear and be convinced by my story?
Before the interview I went to the hospital to see what Phillips Auditorium looked like. It was in a newer pavilion that was of modern design. Peering through the open doorway, I saw a podium just right of center and, slightly to its left, a small black table with 2 chairs in front. There were several hundred seats that slanted upward toward the back and curved inward at the sides.
A few days before the Rounds, Dr. Gingerich asked me to be at the auditorium by 10:55 A.M. on Thursday. He said I could wait in the hallway while he gave my case history.
"When it's time for the interview, someone will tell you to come in. You will sit at the front with Dr. Chapman. I have spoken with him to confirm he will be doing the interview. When speaking, feel free to take as much time as you want."
"After he has interviewed you, you may leave, and Dr. Chapman will give his perspective and summary. I will then be giving a review of schizophrenia recovery, covering some of the research that is available. I will give you a copy of my presentation."
As the time grew near, I began to feel nervous and was apprehensive about my ability to speak. When I asked an older person I respected for advice, he gave me some needed assurance.
"I think everyone experiences anxiety speaking in front of others, but once you begin, it will lessen. Keep in mind that the people attending the Rounds are interested in you and what you have to say. They are grateful for your willingness to share your experience with them."
It was a cold January morning. I dressed in black slacks with a jacket, and black dress shoes. Living only 15 minutes from the hospital, I put on my winter coat and headed out. I had picked out a lobby where I might wait and, arriving early, I went over my notes one last time.
I arrived at the auditorium at 10:50 A.M. There I sat on a small beige couch and set my backpack on the floor. Medical professionals hurried past on their way into the auditorium, and I recognized a few faces. One was a middle-aged psychiatrist who had spent part of his career at the Community Mental Health Center. Another was a young, curly-haired, bespectacled woman who went by with a spring to her step.
Dr. Gingerich arrived just before 11:00. He had on a white lab coat and a navy tie. He smiled, said hello, and held out some papers. I stood, and he explained that, after my interview, he would give the PowerPoint presentation shown. Within the squares he had definitions of "remission" and "recovery." He also had data from studies in answer to the question: How frequently does recovery occur? There were also squares showing the long-term course of schizophrenic illness and factors associated with favorable outcome.
"I made copies for you."
He handed them to me.
"Thank you."
"After I review your history, someone will open the door and ask you to come in," Dr. Gingerich reminded me.
"Okay," I said, barely audible.
He left and I waited.
Someone closed the doors, and I heard a deep booming voice over the loudspeaker coming from the auditorium. Though I recognized Dr. Gingerich's authoritative tone, it wasn't loud enough for me to understand. After a while, his voice became subdued, and I retreated into my own thoughts. Just answer the questions. What does the audience need to hear? Speak to the needs of the audience ...
Then a man opened the door and said, "Come in now."
I walked in, avoiding eye contact with the audience, carrying a bottle of water in one hand and my notes in the other. I had decided beforehand to just look where I was walking and at the people in charge. Dr. Chapman motioned for me to take one of two chairs that faced each other. He asked me to clip on a lapel microphone, which I did.
Dr. Chapman had a brisk, businesslike manner. He was of a slender build, and had short black hair and wide-set eyes. He wore a long-sleeved white shirt and photo ID badge.
After we sat down, he asked, "How have you been doing?"
I froze.
This wasn't a question I had prepared for.
"All right," I said awkwardly, "I do volunteer work."
Hesitating, I didn't know what to say next.
I saw in his eyes recognition of my discomfort. He started to ask another question, but at that moment, someone from the back row yelled, "We can't hear!"
Dr. Chapman quickly went to the back of the table and adjusted some controls. He then said into his mike, "Test. Test. Can you hear it now?"
Scattered around the room voices could be heard.
"Yes, it's okay now."
"We can hear you now."
Dr. Chapman said, "Describe the symptoms that you had in the early stages of your illness and how they affected you."
I immediately glanced at my notes and began.
"When I was in my teens, I was very depressed. I cut my wrists, and then, on one occasion, I overdosed on a bottle of aspirin. I believe this was a reaction to the emotional and physical violence in my home. Needing to get away, after high school I joined a religious cult, which operated under the pretense of being Christian but, in reality, was not. At one point, while in my early twenties and staying in New York City, I became psychotic."
"During the psychotic episode, I heard voices. They began softly, then increased and became loud. They continued for almost 2 years. Occasionally, they were affectionate or humorous, but most of the time they were belligerent. Usually, they were disembodied, but sometimes they spoke through things, such as motorcycles, laundry machines, and animals."
I flipped a page to the bottom of the stack. I had put scotch tape across the top corners of the paper to get a better grip.
"On one occasion I heard soft angelic voices, like baby angels, and they were soothing. But usually, they used obscenities; they sounded demonic and would mention hell. I felt like I was under assault from another realm, as though evil forces were trying to destroy me."
"I was terrified, but couldn't communicate that to anyone. And I didn't think anyone could help me. I felt as though I were fighting for my life. At the same time, I was isolated and felt very lonely."
"Along with these symptoms, I had long periods of depression and lack of motivation. I was unable to cope with life's problems. I suffered from fatigue, impulsiveness, poor social skills, and listlessness. I was without hope."
Most of the time, when not looking at my notes, I looked at Dr. Chapman. At one point, when he raised his hand, I noticed a shiny silver watch. He quickly moved the interview forward with another question.
"What does recovery mean to you?"
As Dr. Chapman spoke, I glanced to the left and noticed, for the first time, Dr. Gingerich sitting in the front row. His head was tilted down; he was looking at the floor.
I returned to my notes.
"Recovery can mean many things," I said. "Recovery can be a process as well as an end. It is not necessarily the disappearance of symptoms, but the attainment of meaningful goals for one's life. Recovery means finding hope and the belief that one may have a better future. It is achieving social reintegration. It is finding a purpose in life and work that is meaningful. Recovery is having clear direction."
Dr. Chapman wanted to keep things rolling; on the edge of my last syllable, he fired: "Give your recovery story."
I saw a few typed words before me.
"After the psychotic episode and hospitalization, I basically went through 3 stages, the last one leading to recovery.
"Stage 1 lasted about 8 years. In this stage I had a period of denial, but after I went back for treatment, I tried to do what mental health professionals advised me to do: live independently and seek employment."
"But even though I was cooperative, I could not find my way out of depression and lack of interest in life. I could not find motivation for everyday tasks. I failed numerous attempts at employment and continued to be socially isolated.
"Stage 2 lasted another 8 years. I became disillusioned with psychiatric professionals, and though I continued to see them for medication and counseling, I no longer respected them. I did whatever I wanted to do. I became impulsive, living only for the moment, and this led to foolish choices. I tried a lot of antidepressants, but I was often fatigued, could not set goals, and therefore, could not achieve them. In general, my life was chaotic. I didn't have any direction and lived a self-centered life."
Braving my fears, I glanced up at the audience and thought I saw an old friend I hadn't been in contact with for years. He was now on staff as a computer scientist in brain imaging research.
"I've abused and hurt some people in the past and I'm sorry for that."
"Stage 3 began after a near-fatal suicide attempt in 1993. I then began to realize I had a decision to make. It was an intellectual choice, but became a matter of heart. I decided to commit myself to Christ. This decision and the events that followed transformed my life. At this time, I also began a new antipsychotic called Risperdal—"
"Risperdal is a good medication. Maybe your life turned around because you were started on this," Dr. Chapman interjected.
"I agree it's a good drug, but not a cure-all. I have a friend on heavy doses of antipsychotics, including Risperdal, and she still hears voices and has other severe problems. I believe my condition improved because of the combination of Risperdal and my religious faith."
As I looked up to the back row I saw a heavyset resident in green scrubs. He was leaning forward with intensity in his eyes.
"I believe the materialistic view of science and the spiritual view of religion should be integrated. One does not cancel the other; they are different aspects of a single thing. We should end the either/or thinking about this."
"I'm not sure I know what you mean," Dr. Chapman said.
I went on to explain the ideas I had focused on over the past few years. I said that, as far as research goes, science is not wrong to pursue biological causes and solutions, yet to ignore the spiritual side of illness is to ignore an important aspect of our experience. It is important for this field to be aware of the positive role faith plays in supporting and facilitating recovery.
I then continued my narrative.
"I joined a church and Bible study group. I also began to rise early for Bible reading, prayer, and listening to religious music. This is something I continue to do that helps me to maintain mental and emotional stability."
"I started to find motivation to do everyday tasks, to set and achieve goals. Only by first placing my trust in God could I then regain my trust in the psychiatric profession and restore my physician to a place of authority. I found others as well, leaders and guides, who gave me valuable advice on how to live. One was Christian writer C. S. Lewis. He said, ‘What a sad world it would be with no one to look up to.’"
"I had fewer and shorter episodes of depression. There was more joy in life and hope for a better future. I found more opportunities to improve my social skills and I reconciled with my family."
"Also, changes began when my psychiatrist encouraged me to write. Writing has been an important aspect of my recovery. My interest in integrating medicine and spirituality prompted me to research questions I had. One was, What is the meaning of psychosis? From the scientific materialist view there seemed to be little meaning in illness. But my faith revealed to me that my illness gives me a chance to glorify God. As a Child of God, I felt my life wasn't worth much unless I could tell others about His kindness and love. Writing has given me a way to do this. I set goals of seeking publication for articles. And my faith gave me the strength to write a book."
"Best-selling author Anne Lamott said, ‘I don't know much, but I understand how entirely doomed I am without God.’"
"This is also true for me: the only reason I'm alive today is because God intervened."
Dr. Chapman nodded and stood.
"Thank you," he said.
I stood, took off my mike, and handed it to him. After taking my water bottle, I walked across the floor and out of the auditorium.
I later heard about Dr. Chapman's summary, Dr. Gingerich's presentation, and the discussion that followed.
Dr. Chapman said that he thought I was doing well from a psychiatric standpoint. He felt that my faith had brought me through some difficult times.
After Dr. Gingerich's presentation a gray-haired psychiatrist in the middle row raised his hand.
"How do we know that Marcia's religious faith is not just an extension of her illness, a delusional belief?"
Dr. Gingerich cleared his throat and took a step forward.
"It is true that since Freud's time religion has been viewed as pathology, as fulfillment of a wish for an omnipotent parental figure," he said. "Religion has also been considered a crutch for the weak and feeble-minded. Many have maintained that psychiatry, as a branch of science, must be based on empirical research. And since the existence of God cannot be verified by scientific methods, such a belief must be illusionary. However, throughout history, great numbers of people have known a God who has personally revealed Himself to them. We should also keep in mind that the founders of modern science, ie, Copernicus, Kepler, Galileo, and Newton, were men who believed in God. Two who are generally regarded as key figures in the development of scientific methodology, Descartes and Bacon, considered God important. And, many of today's scientists are religious men and women as well."
"To demand that all conform to the philosophy of secular humanism is not right. Mental health professionals must not impose their worldview on patients."
A psychiatric resident raised his hand.
"Marcia is not cured. I'm not sure I understand what you mean by your concept of ‘recovery.'"
"In psychiatric terms, we are generally taught that recovery means cure, but that is not the concept that people in the ‘recovery movement' have," Dr. Gingerich said. "These people are ‘life-oriented.' They see recovery as finding meaning and purpose in life. Instead of focusing on schizophrenia, the disease, they emphasize the potential for growth in the individual. That potential is then developed by integrating medical, psychological, and social interventions."
"I think your terminology is confusing," the resident said.
Several heads nodded in agreement.
"There should be a term besides ‘recovery' to describe this," the resident insisted.
No one offered any suggestions.
"Are you saying she no longer needs treatment? I don't buy that," the resident said.
"No," Dr. Gingerich said, "I'm not denying illness or saying there is no need for ongoing treatment. I am saying that instead of simply focusing on symptom suppression, the mental health field should focus on the fundamental role of hope, empowerment, and overall wellness of the individual coping with a chronic illness."
Dr. Gingerich shuffled some papers and said he was quoting A. Kathryn Power, M.Ed., director of the Center for Mental Health Services Administration, U.S. Department of Health and Human Services.
"Recovery in a mental health context is a life-affirming journey of personal growth. Its focus is on what a person can achieve as he or she gains control of a disorder and moves forward with life.... They discover new possibilities within themselves.... The most unshakable premise is that every individual has a continuous capacity for growth. The process of recovery builds on the strengths of each individual. The mental health system should be changed to one that focuses on the individual strength, not the illness. We must provide a breadth of services that acknowledge the whole person and not just the disorder, not just the disability."
"And, as providers, we need to listen to the stories of people with mental illness. Because of their lived experiences, they lend unique insight into mental illness and what makes recovery possible."
A young woman in the front row raised her hand.
"Dr. Gingerich, what are the new treatments and attitudes that are making mental health professionals more optimistic about schizophrenia?"
"That is an excellent question," he said. "Over the past decade it has been the development of the new antipsychotic medications. Other things include cognitive behavioral therapy, social skills training, and new programs in job training. The emphasis on these things varies from country to country. For example, I think that the newer medications have led to the most optimism in the United States. In the United Kingdom and some parts of Europe, I think it has been cognitive behavioral therapy. Overall, continuing treatment research, both pharmacological and psychosocial, has led to more optimism."
Much discussion followed, and some agreed with the recovery movement's model while others remained skeptical. At the end of the Rounds, the woman with spring in her step approached Dr. Gingerich.
"For Marcia, God's intervention and spiritual healing were clearly important. I feel we need to affirm this with patients who have such beliefs."
Dr. Gingerich nodded, and then an older physician carrying a brown leather briefcase stepped up.
"I think this was the best Grand Rounds in over a year," he said. "It gives me hope for my patients who have schizophrenia. Our previous chairman held the view that no one truly recovers from schizophrenia."
"His opinion was obviously based on a medical model of recovery that stresses cure," Dr. Gingerich said. "According to that model, illness is simply mechanical breakdown or dysfunction."
Several other people told Dr. Gingerich that they also felt it had been one of the best Grand Rounds. Later, in his annual review, the department head told Dr. Gingerich that his Rounds had been well received and that the ratings for it were the highest on any faculty member for the year. He said he was sorry to have missed it (he had been out of town).
True, my illness had devastated me. It had crushed me in heart, mind, and spirit. The rebuilding of my life took time, 25 years in fact. But despite serious illness, I had found meaning. And now, the telling of my story at Grand Rounds had brought glory to God. My illness, in and by itself, appeared to have destroyed me. But stepping back to see the broader picture, I saw that my painful trial of suffering had had a greater purpose.
Though I continue to have setbacks and struggles, I am singing a song of a new and transformed life.
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Footnotes |
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1 To whom correspondence should be addressed; e-mail: mamurphy{at}inav.net
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