What Shaped My Career

It is difficult to be certain what shapes our lives and careers. If we were born again with just one thing changed, such as our parents or birthplace, then we could determine the essential factors. Alas, we are each living a unique social experiment with an N of one.

My best guess is that my life and career were largely shaped by four seminal experiences. The first was my younger sister’s psychotic breakdown in 1957, at age 18. Rhoda had serious schizophrenia with anosognosia as well as treatment resistance. At one time she was suicidal and homicidal. She was hospitalized continuously in a New York State hospital for 25 years and spent the rest of her life in group homes and nursing homes. I was a third-year premed student in college when she got sick, and I envisioned myself practicing family medicine. Because my father had died when we were young, I accompanied my mother and sister as they sought a definitive diagnosis and treatment at psychiatric centers recommended by friends—Columbia, Massachusetts General, Silver Hill, the Brattleboro Retreat, Baldpate, etc.

I came away from the psychiatric consultations with two strong impressions. First, it seemed clear that nobody had any idea what caused schizophrenia. One nationally prominent psychiatrist told my mother that Rhoda’s illness had been caused by the death of my father. That made no sense to me whatsoever because my older sister and I had shared all of Rhoda's childhood experiences and we seemed to be pretty normal—other than the time she broke a dinner plate over my head because I had called her a bad name. My mother, who had had only a high school education, was baffled by my sister’s ordeal and the lack of available information. These events certainly influenced my decision many years later, when I was working with patients at St. Elizabeths Hospital, to write Surviving Schizophrenia (1983) for their families.

The other strong impression these early consultations evoked about my sister's illness was that the brain was a very mysterious place that appeared to be almost completely unexplored. I had always been attracted to mysterious places geographically, especially Africa, and the brain seemed to be the human body's equivalent of Africa. I was able to understand my father's illness and death from heart failure—the heart was a failing pump. But what could possibly cause the brain to hear voices that did not exist? Or to have delusional thoughts that British soldiers were attacking our house, as my sister had experienced? C. S. Sherrington was correct in describing the brain as “an enchanted loom.” My attraction to the brain as a mysterious and intriguing organ has lasted a lifetime and led me to establish the Stanley Brain Collection years later.

The second seminal experience that shaped my life and career was spending two years in Ethiopia as a Peace Corps physician prior to my training in psychiatry. I spent time in the country’s only psychiatric hospital with one of the three psychiatrists available for 25 million Ethiopians. Serious mental illness in general, and schizophrenia in particular, appeared to be uncommon in Ethiopia at that time. This circumstance piqued my interest in the epidemiology of schizophrenia and its distribution in the world. In later years I spent 3 months in the Highlands of Papua New Guinea, where schizophrenia was virtually unknown, and 6 months in western Ireland, where schizophrenia appeared to be prevalent. I also began exploring the idea that schizophrenia had been a relatively rare disease prior to the 19th century, when its prevalence increased sharply. I was impressed by several epidemiological aspects of the illness: the suggestion that cases were clustered by neighborhood, the increased risk of developing the illness among those born in a city, and the seasonal pattern of births among those with schizophrenia. My research led to the publication of Schizophrenia and Civilization (1980) and later of The Invisible Plague (2001). By the early 1970s the epidemiology had also led me to consider whether infectious agents were the cause of schizophrenia.

In Ethiopia I also began to spend time with indigenous therapists—so-called witchdoctors. One of the best known in Ethiopia at that time was Abba Wolde Tensae, a priest in the Ethiopian Orthodox Church. He was known throughout the country for his ability to cure individuals afflicted by zār spirits that were thought to cause anxiety, depression, psychosomatic symptoms, and other illnesses. He lived two hours from me, and on several occasions I attended his group healing sessions. He was proud of his healing skills, believing that they came from God, and he willingly discussed his techniques with me. He seemed to be very effective in helping many people with various neuroses and personality disorders. This experience led me to pursue the study of other indigenous therapists. In 1969, for example, while on our honeymoon, my wife and I visited indigenous therapists (manangs) among the Iban people in Borneo—and even drank too much wine with one manang in his treehouse one evening. The outcome of such experiences was my book The Mind Game: Witchdoctors and Psychiatrists (1972).

The third seminal experience that shaped my life and career was going to work at the National Institute of Mental Health (NIMH) in 1970 after completing my psychiatric residency. At the time, funding for John F. Kennedy's community mental health centers (CMHCs) was at its peak. Over 600 million federal dollars had already been spent to fund 457 CMHCs. NIMH was full of young, idealistic mental health professionals who were excited to work to discharge patients from state psychiatric hospitals and create CMHCs to help individuals with mental illness receive treatment in the community, thereby averting most hospitalizations. In my opinion, in the history of social programs in the United States, rarely have so many well-meaning people known less about the task before them.

Although the CMHCs were not part of my official NIMH duties, I became interested in them. I reviewed site visit reports and visited one CMHC myself. Although there were a handful of CMHCs that were doing a good job, it was clear to me that most of them were using federal money to pay for services that were comparable to services delivered in private practice. My analysis of the situation was that the CMHCs had no interest in providing aftercare services for the thousands of individuals with serious mental illness who were being discharged from the state psychiatric hospitals.

Most discouraging to me was my observation that NIMH officials seemed uninterested in improving the CMHC program. Congress had appropriated the CMHC funds, which had to be spent in their entirety to preclude Congress from giving less money the following year. If NIMH threatened to cut off funds to a CMHC in a particular district, it would then have to deal with a member of Congress representing that district. In my view, the most important factor in the lack of improvement to the CMHC program was that the program was part of the legacy of President Kennedy and therefore had to be portrayed as a great success, details be damned. This was a valuable lesson in how Washington works—or doesn’t work. I became convinced that I was witnessing the beginning of a disaster and began keeping notes. These notes led to four books over the next 4 decades on the failure of deinstitutionalization, the most recent being American Psychosis: How the Federal Government Destroyed the Mental Illness Treatment System (2014).

The final seminal experience that shaped my life and career was going to work at St. Elizabeths Hospital in 1977. Working as a ward psychiatrist with patients, most of whom had schizophrenia and bipolar disorder, sharpened my clinical skills and my understanding of these diseases. It also allowed me to collect blood and cerebrospinal fluid (CSF) from my patients and to assess them neurologically. It was then that I first sought out infectious disease specialists who were willing to examine the blood and CSF I was collecting for evidence of infectious agents. These consultations were the beginning of research that I have pursued ever since. Working at St. Elizabeths provided an additional advantage: the NIMH research unit on hospital grounds, under the direction of Dr. Richard Wyatt, allowed me to collaborate on research projects with several members of that group. The most noteworthy project was a large study of identical twins in which one or both had schizophrenia.

In summary, it has been more than 60 years since schizophrenia began to dominate my sister’s life and, in different ways, my life as well. My experiences have left me with two strong impressions. The first is great admiration for people who must live with this most unpleasant illness. The second is inspiration from my colleagues who have dedicated their careers to providing clinical care, to researching this disorder, or both. And there is still a lot of work to be done.