Insiders: “The Collected Schizophrenias” by Esme Weijun Wang

Esme Weijun Wang’s book is a collection of essays. As such it is different from most other memoirs about schizophrenia. The essays do not necessarily form a cohesive picture of the collected schizophrenias or of Ms Wang’s experiences as a person with a diagnosis of schizoaffective disorder. Her first essay, “Diagnosis”, does, however lay the groundwork for both an understanding of the background and context of various diagnostic categories and her own experience with her particular diagnosis (es). The other essays provide a combination of her ongoing struggles with her disorder and commentary of the psychiatric and psychopharmacological cultures.

To provide for context here, I will share just the first part of the Diagnostic and Statistical Manual (DSM 5) description of symptoms for schizophrenia, indicated on page 8 of Wang’s book:

“Schizophrenia, 295.90

A. Two (or more) of the following, each present for a significant portion of time during a 1 month period (or less if successfully treated). At least one of these must be (1), (2), or (3):

  1. Delusions
  2. Hallucinations.
  3. Disorganized Speech (e.g. frequent derailment or incoherence)
  4. Grossly Disorganized or Catatonic Behavior
  5. Negative Symptoms (i.e. diminished emotional expression of avolition).”

Wang distinguishes the diagnosis of schizophrenia from her own diagnosis of schizoaffective disorder:

” Schizophrenia is the most familiar of the psychotic disorders. Schizoaffective disorder is less familiar to the layperson and so I have a ready song -and- dance that I use to explain it. Ive quipped onstage to thousands that schizoaffective disorder is the fucked-up offspring of manic depression and schizophrenia, though this is not quite accurate: because schizoaffective disorder must include a major mood episode, the disorder may combine mania and schizophrenia or depression and schizophrenia.”(p.10).

I will have plenty to say about the DSM as a political/economic “sacred text” later, but for now, Wang’s description of her diagnosis in the context of her own felt experience is wonderfully expressed in the following passage:

” To read the DSM-5 definition of my felt experience is to be cast far from the horror of psychosis and an unbridled mood; it shrink-wraps the bloody circumstance with objectivity until the words are colorless. I received the new diagnosis of schizoaffective disorder after twelve years of being considered bipolar, in the middle of a psychiatric crisis that went on for ten months. By then, the trees had long shed their dead leaves. But in the beginning of 2013, the psychosis was young. I had months to go of a frequent erasure of time; the loss of feeling toward family, as though they had been replaced by doubles (known as Capgras delusion); the inability to read a page of words, and so forth, which meant that the agitation I felt at realizing something was badly wrong would only go on and on and on and on.” (p.11)

In her essay, “On the Ward”, Wang addresses the issue of involuntary hospitalizations and her assessment of the effects of her own involuntary hospitalizations:

“For those of us living with severe mental illness, the world is full of cages where we can be locked in. My hope is that I’ll stay out of those cages for the rest of my life, although I allow myself the option of checking into a psychiatric ward if suicide feels like the only other option. I maintain, years later, that not one of my three involuntary hospitalizations helped me. I believe that being held in a psychiatric ward against my will remains among the most scarring of my traumas.”(p.110)

Wang’s last two essays, “Chimayo” and “Beyond the Hedge”, report her somewhat flailing attempts to identify a diagnosis she can fit on for size, such as the possibility that she may have “neuroborreliosis” (late stage Lyme disease) rather than schizoaffective disorder, and her attempts to align her experiences with spirituality- that her illness might be a “spiritual gift”. Wanting to have her illness have some meaning, she expresses what many others with any illness likely feel, “In my illness I became hungry to understand suffering; if I could understand it, I could perhaps suffer less, and even find comfort in the understanding. What I have found difficult is not seeking an escape hatch out of pain, whether that be pills, alcohol, or the dogged pursuit of a cure. In suffering, I am always looking for a way out.”(183).

Insiders: The Schizophrenias

Among the number of insider accounts of living with the diagnosis of and the symptoms of schizophrenia, I will share my understandings of and reflections on the following significant accounts:

  • “The Collected Schizophrenias” (2019) by Esme Weijun Wang
  • “The Center Cannot Hold” (2007) by Elyn R. Saks
  • “Perceval’s Narrative: A Patient’s Account of His Psychosis, 1830-1832”. (1974) Edited with an Introduction by Gregory Bateson
  • ” Operators and Things: The Inner Life of a Schizophrenic” (1976) by Barbara O’Brien
  • “Two Accounts of a Journey Through Madness” (1978) by Mary Barnes and Joe Burke
  • “A Mingled Yarn: Chronicle of a Troubled Family” (1979) by Bulah Parker
  • “Is There No Place for Me?” (2014) by Susan Sheehan

I venture into my reflections with several caveats and some wariness. Of all mental illnesses, schizophrenia may be the most represented (and misrepresented) and controversial psychotic disorders. There continue be a number of misconceptions about schizophrenia and the long standing debate between the strictly medical diagnosis and some psychosocial/familial interpretations of what might be basic causes of schizophrenia continues to be a controversy. I will discuss this as I move through the sources mentioned above. My plan is to provide some background about the history of diagnosing psychotic illnesses, focusing particularly on schizophrenia, then mention what are currently considered various schizophrenias in the Diagnostic and Statistical Manual (DSM V), and then to move to insider accounts.

For readers who would like to begin investigation of some of the sources I mention, I suggest that you begin reading Esme Weijun Wang’s first essay , “Diagnosis”(p.3) in “The Collected Schizophrenias” (2019). She provides an up-to-date analysis of the different types of schizophrenia diagnoses in the context of her own experience (currently) with schizo-affective bipolar type disorder. I will also begin my probe into the insiders’ stories with her essays.

I will then discuss the classic current account of personal experience with schizophrenia by Elyn R. Saks, “The Center Cannot Hold” (2007). “Percival’s Narrative” is likely the first known insider account, since John Percival kept a journal while he was committed to a mental institution from 1830-1832. I will discuss this account based on Gregory Bateson’s commentary, which will also lead into some discussion about Bateson’s notion of the “Double Bind” and other psycho-social interpretations of the bases of schizophrenia. The classic “Operators and Things” (1976) by Barbara O’Brien may give the reader the best “inside” feel for what happens to the mind and person who has schizophrenia. I will share some or her descriptions of her hallucinations and her journey with schizophrenia.

“Two Accounts of a Journey Through Madness” (1978) by Mary Barnes, who had schizophrenia, and her psychoanalyst, Joe Burke, may be the only insider account which includes both patient and therapist. This document is also unique in it’s approach to treatment which is based on the R.D.Laing and Tavistock Clinic in London concepts of de-stigmatizing schizophrenia. I will discuss this as well.

Buelah Parker was a psychiatrist and psychoanalyst who reports her experience working with a particular American family in “A Mingled Yarn” ((1979). Parker’s framework represents an example of the family systems interpretations of the psycho-social causes of schizophrenia, which I will discuss in the context of Bateson’s “double bind” theory and the family systems/family therapy movement.

“Is There No Place for Me” (2014) is not strictly an “insider” account, because Susan Sheehan is not a patient or therapist. She is a journalist. But her ethnographic approach captures the experiences of Sylvia Frumkin’s insider story of living with schizophrenia with amazing insider documentation. Sheehan practically lived with Sylvia during two years of her mental institution experience.

Insiders in Psychotherapy

I am referring to people who are inside of psychotherapy as either patients or clients and as helpers – primarily psychotherapists and psychiatrists. There is a genre of memoirs by former and current people with some degree of mental illness. The illnesses vary but are primarily about living with a diagnosis of schizophrenia, bipolar, depression, and types of personality disorder. I will be reviewing and commenting on all of these and possibly some other illnesses. There is also a genre of case studies or “case stories” written by psychotherapists, psychoanalysts, psychiatrists. I will also review and comment on some of these. There is a third type of insider genre – very unusual- of a combination of a patient’s account and that of the therapist’s in the same document. The primary example of this genre is “Two Accounts of a Journey Through Madness” (1978) by Mary Barnes and Joe Burke, which I will review later. Finally, there are a few examples of writers who have had and continue to have mental illness and who are also helpers – psychotherapists or psychiatrists. Lauren Slater, whose books I reviewed earlier, fits this category , as does Kay Redfield Jamison, who has written several books about her own mental illness and the burden of depression. I will review her work when I focus on depression. Non-insider (social scientists, historians, philosophers, journalists) accounts can sometimes resemble insider accounts when a degree of imbeddedness or ethnographic involvement captures the authenticity of the inside experience of being mentally ill and living with this illness – both psychologically and within societal structures, such as mental institutions. I will also comment on some of these.