narrating major mental illness

In her wonderful book, Life Writing and Schizophrenia: Encounters at the Edge of Meaning, my colleague Mary Wood analyzes first-person accounts of schizophrenia, including that of her own mother, and shows how those suffering from major mental illness are in fact able to make sense out of their experiences. The interpretive process in Wood’s book is multi-layered: family members try to make sense of signs of distress, psychiatrists interpret clinical symptoms, and sufferers reflect on past psychotic episodes in ways that inscribe them with significance within particular social, historical, and cultural worlds. Wood writes, “Rather than being merely swept up in confused, fragmented, chaotic narratives, my mother was caught within too many narratives whose endings were already known. This is an important lesson I learned from my mother about schizophrenia and one that clinicians do well to keep in mind. It’s a distortion to say simply that someone living with schizophrenia has a false sense of reality. It is rather the case that the person’s sense are perceiving something with acute intensity” (pg. 288). I’ve been reading Wood’s chapter on her mother’s illness this first week of fieldwork in the major public psychiatric hospital here in Puebla. The interviews we are conducting ask patients to describe their explanatory model of illness- drawing directly on the work of Arthur Kleinman and other psychological anthropologists, the interviews aim to elicit first-person accounts of: what caused the “problem”, what the “problem” is, what possible remedies for the “problem” are, and how the psychiatric care the patient is receiving at the hospital can be improved to better address the “problem” — all from the patient’s perspective. I will describe the source of this interview guide in another post, but for now I want to share a bit of the story of a patient I will call Marcelo, who I interviewed yesterday. Marcelo is in his early 50s but has been living with schizophrenia for over 30 years, his first major psychotic episode occurred when he was 21, and he attributes the break to several factors: the death of a brother, the death of his father, and early childhood trauma, including hunger, poverty, and violence. Keeping Wood’s claims about sufferers’ ability to narrate their own experiences in mind, I was struck by how much Marcelo’s account of his illness support Wood’s argument. Marcelo remembered with lucidity dates of important life events and of major hospitalizations, he recalled names of many of his past clinical providers, and told a detailed story about being a goat-herder as a child but facing his father’s beatings when he lost a goat. Interestingly, and in what is not unusual in my experience working with those diagnosed with schizophrenia in Mexico, Marcelo also attributes one crisis episode (“crisis of nerves” in his words) to his experience as an undocumented migrant living in the U.S. for four years several decades ago. Throughout an over 40-minute interview, Marcelo was attentive to the interviewer, illustrative in his responses, and seemed comfortable with the setting. I was particularly surprised by his ability to narrate his experience because, after reviewing his chart notes, the attending psychiatry resident had warned me that Marcelo had recently suffered an episode of psychosis and she wasn’t sure he would be able to participate in our interview. This clinical perception – of schizophrenics as unable to narrate their experience – pervades not just the clinical encounter, but prevention programs and popular perceptions as well. Even well-established prevention programs are based on recognizing signs and symptoms of schizophrenia, such as false beliefs or hallucinations, that reinforce the idea that a schizophrenic mind doesn’t “make sense” but rather “makes nonsense”. While, like Wood, I in no way want to minimize the suffering that comes with major psychotic episodes, Marcelo’s case reminds me of the importance of recognition – here, I mean, recognizing the other’s ability to make sense and make significance out of suffering. 


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