By Claire Phillips
The night before picking up a copy of The Collected Schizophrenias: Essays, Esmé Weijun Wang’s essays on the subject of “the full psychotic spectrum” or what are called “the schizophrenias” (4), I anticipated its themes in a threatening dream related to my mother’s struggle with an illness that went undiagnosed for far too long.
Finding myself on a fully illuminated planet, one so bright the world around me is shrouded in darkness, it is as if I were a patient who has abruptly awoken from an anesthetized state to punishing white light. All alone but for a shadowy figure who apparently has it out for me, I spend my time agonizing over the moment when my shadowy nemesis will push me off this bright rugged planet into the dark vector of outer space and to a certain death.
I awaken chilled. What is the significance of this dream? Why am I under such immense threat? Why am I so alone?
My mother lived with a chronic, mental disorder for years until she was finally diagnosed in her forties with paranoid schizophrenia, a subtype listed in the DSM-4 (Diagnostic and Statistical Manual of Mental Disorders) that was often considered the most difficult to treat, one that now is excluded from the DSM-5 (2013). The terror I succumbed to in this recent dream seemed to parallel and empathize with the desolation that my mother was subjected to during her many relapses until, at 73 years old in 2013, she succumbed to the unfortunate consequences of a long untreatable psychosis.
Wang—who was diagnosed first with “bipolar disorder” in 2001 after graduating from high school “back when (she) first suspected fresh hell in (her) brain” (4), and then eight years later with “Schizoaffective Disorder, Bipolar Type” after she experienced her first hallucinations—reflects upon the insufficiency of present biomedical language in both the diagnosing of mental health disorders and the conveying of the embodied, somatic experience of living with a chronic illness. “The mediocentric view” is “increasingly at odds with the kind of care patients and families want and today expect for the chronic illness,” Dr. Arthur Kleinman puts forth in his seminal work The Illness Narratives—Suffering, Healing and the Human Condition (130), advocating for the popularization of personal accounts of illness as an essential element of medical training. In colorful, immediate language, Wang confronts the most haunting aspects of her illness: the unclear etiology, its confused medical and psychoanalytical history, while providing a road map for those who might confront similar diagnoses.
Wang, a literary author of fiction and nonfiction, performs a necessary service for herself and an ever-expanding community as she reflects on the confusion and lack of familiarity with the “psychotic disorders.”
“Schizophrenia is the most familiar of the psychotic disorders,” Wang establishes early on in her collection. Of schizoaffective disorder, which “is less familiar to the layperson,” she relays, “I have a ready song-and-dance that I use to explain it. I’ve quipped onstage to thousands that schizoaffective must include a major mood episode, the disorder may combine mania and schizophrenia, or depression and schizophrenia” (10).
Cluing us into some of the more taxing symptoms of this illness during a ten month “psychiatric crisis,” she reports of “a loss of feeling toward family, as though they had been replaced by doubles (known as Capgras delusion)”(10–11), a rare condition that was also experienced by my mother, whose diagnosis of paranoid schizophrenia (a type that has fallen out of favor as previously mentioned) is contemporarily a markedly different one to Wang’s Schizoaffective Disorder, Bipolar Type 295.70. Also known as imposter syndrome, it is the basis of notable plot twists executed by science fiction writer Philip K. Dick, “the king of the paranoids” (as author Jonathan Lethem has famously quipped), most notably in the form of the imposter police station in his cult pulp novel, Do Androids Dream of Electric Sheep?
Artfully, Wang argues for the recuperation of Swiss psychiatrist Eugene Bleuler’s 1911 conception of schizophrenia as “a genus rather than a species”: “As a concept the schizophrenias encompass a range of psychotic disorders, and it is a genus that I choose to identify with as a woman whose diagnosis is unfamiliar to most—the shaggy, sharp-toothed thing, and not the wolf” (12). Wang reflects with her signature wry candor on this language—no longer the test subject or ethnographer’s “informant” (Kleinman 232)—but an active participant on the detached, psychiatric cant that has come to typify our understanding of these chronic conditions. She thereby effectively discharges the stigma associated with a chronic mental health disorder or neurodiverse identity.
As disability studies critic G. Thomas Courser notes, it is important to recognize that “one of the most important breakthroughs in life writing in North America… over the last three decades has been the proliferation of book-length accounts (from both first- and third-person points of view) of living with illness and disability” (450). Coinciding with the disability rights movement and the passage of the Americans with Disabilities Act in 1990, “autobiography and life writing about disability[,] written from inside the experience in question… offers the best-case scenario for revaluation of that condition.” Courser continues, “With particularly severe or debilitative conditions, particularly those affecting the mind of the ability to communicate, the very existence of first-person narratives makes its own point: that people with condition ‘X’ are capable of self-representation” (451–452).
These works of life writing are not new. Indeed, the English literature of psychiatric memoir or, as some have called them, “madness survivors,” is extensive, with literally hundreds of titles published and catalogued. Some examples include George J. Adler’s Letters of a Lunatic: A Brief Exposition of My University Life during the Years 1853–1854; countless anonymous authors dated back to 1852 and earlier with “A Letter from a Patient” The Opal: A Monthly Periodical of the New York State Lunatic Asylum, Devoted to Usefulness; and some of the bestselling and illuminating twentieth century titles, from the literary biographies of New Zealand’s Janet Frame (1982–1989), the most famous of which was made into the celebrated Jane Campion film, An Angel at My Table, to The Quiet Room: A Journey Out of the Torment of Madness Schiller, by Lori and Amanda Bennett (1994), to the renowned memoir by law professor and mental health disability advocate Elyn Saks, The Center Cannot Hold: My Journey Through Madness (2007) and including the evocative debut memoir, My Body is a Book of Rules, by Elissa Washuta (2014).
Adding to this literature, The Collected Schizophrenias transcends category, serving as medical history, psychiatric memoir, cultural criticism, and creative nonfiction. Wang not only investigates the history of her own diagnosis but also participates in its research, working as a lab manager for the Stanford’s Mood and Anxiety Disorders Laboratory, running clinical interviews to assess potential subjects for study where the Structured Clinical Interview for DSM-IV, or SCID, was used. Doing these “hundreds, if not thousands of interviews,” made it clear to Wang that “diagnoses were rarely cut and dry” (15).
In his article, “Why Does the Diagnosis of Schizophrenia Persist?” Huw Green notes of this confusion, “High-profile psychiatrists (e.g., Torrey, 2013; Lieberman, 2015) promote the view that schizophrenia is a brain disease, although neither of these prominent psychiatric voices, nor for that matter anyone else, is in a position to outline a unifying basic physiological process. In 2016, the diagnosis of schizophrenia is still made on the basis of behavior rather than physiology.”
Worldwide schizophrenia is diagnosed in 1% of the population and in America, according to MentalHelp.net today, in 1.2% of the population. It bears mentioning that schizophrenia, according to Huw Green “has become a ‘Black disease’; over-applied to Black people since the 1968 Diagnostic and Statistical Manual of Mental Disorders (DSM)-II and the association (in the minds of professionals) between blackness, violence, and psychosis,” which may account for this slight yet significant statistical difference.
Wang, an “overachieving child” of hard-working Taiwanese immigrants who viewed meals at Pizza Hut a prized goal (59), includes roughly similar statistics about schizophrenia and its incidence in the American population, citing the National Institute of Mental Health (NIMH). She then asks us to acknowledge those whose experience is similar but not in the forefront of this discussion: “The number grows when considering the full psychotic spectrum, also known as ‘the schizophrenias:’ 0.3 percent of the American population are diagnosed with schizoaffective disorder. 3.9 percent are diagnosed with schizotypal personality disorder” (4).
When including those of the “collected schizophrenias,” the percentage of the population afflicted by these disorders increases to roughly 4%: a not so insignificant number. Wang’s brilliance in promulgating a return to Bleuler’s definition of schizophrenia as a “genus” cannot be overstated (12).
For years, I struggled to reconcile why my mother’s condition existed in a category so dissimilar from friends whose parents reckoned with related disorders. How was M.’s mother’s difficult-to-treat bipolar disease so very different from my mother’s struggle with schizophrenia? Both women would experience a form of psychosis that made daily life nearly impossible, and while my mother and M.’s diagnoses markedly differed, she and I both found ourselves mired in angst whenever our respective mothers relapsed, often the result of the poor administration of medication. This would then be followed by frequent admissions to psychiatric wards, where medical records were ignored and new treatment plans were tried, often with deleterious results.
By recuperating the term “schizophrenia” and thereby forging bonds between family members, friends, and loved ones interconnected by such diagnoses, Wang transgresses her role as a mental health patient and weighs in on the diagnostic discussion with as much applicability as the proverbial white-coated doctor. She is equally formidable when challenging normative disability movement practices, identifying as “lunatic” long after the use of this pejorative term has fallen out of practice. Told to identify “as a person with schizophrenia,” she once again bucks the system, and for good reason. The return to a pure psychic state, before the mental health fall, is a maddening impossibility, one codified by a cultural obsession with self-blame.
In her breakout essay, Yale Will Not Save You, she reflects on the use of “person-first language”: “There might be something comforting about the notion that there is, deep down, an impeccable self without disorder, and that if I try hard enough, I can reach that unblemished self.” Noting with customary wit, “But there may be no impeccable self to reach, and if I continue to struggle toward one, I might go mad in the pursuit” (71).
Wang faithfully reclaims the outdated, pejorative term on more than one occasion—“I’d proved lunatic” (77), she remarks in the face of Yale’s disapproval of her need for mental health services during her freshman year—just as disability author Nancy Mairs so famously recuperates “cripple” for its transgressive power, and as gay and lesbian activists have reclaimed the epithet “queer,” as noted by critic Rosemarie Garland Thomas in Signs, Winter 2005.
Self-identifying as “lunatic,” Wang transcends the disability movement’s standards for identifying as separate from disorder/illness/disability. “Lunatic” is a term with a long history—first appearing in print in the Middle Ages with William Langland’s alliterative vision of Piers Plowman, to suggest a kind of episodic insanity or psychosis dependent on the changes of the moon. Recuperating it allows for a blemished productivity, one in which “the effects of disability” that include “trauma, mourning, and loss” as outlined by Alison Kafer in her essay “Un/Safe Disclosures: Scenes of Disability and Trauma,” are made welcome reflections on disability, not to be feared or censured for fear of performing “abelist framings.” Wang’s embrace of lunacy is a rewarding counterpoint to the purifying self-improvement, be it psychic, emotional or embodied, that emanates from so many popular culture channels.
This literature of “the collected schizophrenias,” and the complicated, fraught treatment of psychosis is at its elegiac best in the stunning, slim cross-genre memoir, The Guardians: An Elegy for a Friend by Sarah Manguso (2012). This is a work that should be included not just on every best nonfiction list of early 21st-century literature for its indelible act of remembrance and evocation of the incandescent grief that is inherent in the untimely loss of a loved one, but also as a key reference for the medical humanities. In her book, Manguso performs a psychological, medical, and forensic investigation of her friend Harris’s suicide, a death specific to New York City—jumping from the subway platform in front of a fast moving train—while she narrates moments from her post-college years in Manhattan: an exciting decade of art, erotic adventures and an enthralling platonic love affair with Harris, a musical prodigy whose mythical “penis” is a subject of excitement and consternation within this circle of young budding artists (16–17).
In this defining friendship, Manguso must choose between the camaraderie of an inspired fellow artist and a potentially fleeting erotic love, smartly choosing the latter; which renders the unspeakable loss of Harris no less painful.
Through elliptical passages of alternating wit, philosophy, medical history and memoir, Manguso makes us privy to the dizzying truth of surviving a loved one; of not having been capable of shoring him up in the face of the “unendurable suffering” that is emblematic of Cheryl F. Mattingly’s reflection on illness narratives: “silences of half-told tales disclose” more than a “well-told tale” (qtd. in Wasson). Faithfully addressing superstition, psychology and medicine, Manguso excavates the unpalatable truth that the abrupt loss of a talented young man was frighteningly unnecessary.
What was the origin of Harris’s ongoing battle with psychosis and its intermittent resurgence? Considering many possibilities, including that of Harris’s being possessed by a dybbuk—“in Jewish folklore, … malicious possessing spirits” (74)—Manguso interweaves the neurobiological. Was it the medication-induced akathisia, the restlessness associated with the neuroleptic medication meant to quell the symptoms of psychosis, that drove him to jump in front of that train, and not the more common psychosocial feelings of hopelessness and despair?
Adding powerfully to the case is her admission to a suicide attempt in high school and the resulting experience of being on medications, ones that also engendered intense side-effects, particularly in the case of the “extrapyramidal side effects” (36)—those related to the neural network in the brain involved in the coordination of movement that accompanied first-generation antipsychotics introduced in the 1990s.
Through this lens, she remarks on her mental health history: “In the last eleven years, I’ve taken many psychotropic medications and had very many side effects. Some of them almost unbelievably strange. One of them, dyskinesia—often characterized by repetitive, involuntary, purposeless movements such as grimacing, tongue protrusion, lip smacking, puckering and pursing of the lips—is common side effect of long-term use of antipsychotic medication” (33-34).
She proceeds to describe dyskinesia’s cousin “akathisia,” the likely culprit behind Harris’s disappearance: “Akathisia … is harder to explain because the words used to describe its subjective experience are uselessly abstract: torment, restlessness, pulling or drawing or twisting sensations, a desire to move, a difficulty in staying still” (34). She further tells us, “the word was coined by a Czech doctor, Ladislav Haskovec, in a French medical journal in 1901,” and provides illuminating case studies in which Haskovec describes “a curious movement disorder” in patients, who would experiencing involuntary jumping and concomitant anxiety (35). Spookily, she adds, “Clinicians write that akathisia contributes to impulsive acts of violence and suicides” (80).
Here we have a former psychiatric patient whose narrative agency provides grace and solace, bearing witness to medical treatment and its inadequacies without becoming a psychiatric wonder herself, compared with the largely untreated patients of 19th and early 20th century first-person accounts. “The master text of the medical journal article needs the suffering person, but the individuality of that suffering cannot be acknowledged,” remarks the critic Arthur Frank (12). Considering this, Manguso is a provocateur of the highest order, not just unspooling an elegy to her dearly departed afflicted with psychosis but one of a potential medical mishap, one in which powerfully dangerous side-effects of antipsychotics are recognized as terminal.
This difficult to diagnose phenomenon, as Manguso relays, is often hard for patients to explain “and as a result it’s easily misinterpreted as acute anxiety, depression, psychosis, agitation, mania, terror, or anger.” Because of the lack of clarity, clinicians may miss the opportunity to “prevent its common outcomes, which in literature are overwhelmingly identified as homicide and suicide—specifically by jumping” (37).
Reading through these smartly researched and deeply personal works of Wang and Manguso, of those who address the dimensional “schizotypy spectrum” (33), I sense a seismic shift in the stigma and ignorance that surrounds mental health disorders. Should these works become widely distributed and read both by the public and medical practitioners there is some chance for a tragedy like Harris’s to be avoided.
I ache knowing that had my mother been born a decade or so later she might have seen herself reflected through culture’s bright lights. She may have had the benefit of having watched Wang on the Today show in 2019 openly discuss the common experience of believing she had been poisoned by loved ones, or of having read Manguso’s elegy for a friend diagnosed with “episodic psychotic illness,” enduring a third and final hospitalization (69). And for someone like my mother, whose illness crept up on her suddenly while studying law at Oxford those many years ago, she might have felt that much less alone.
Claire Phillips is the author of the novella Black Market Babies and recipient of the American Academy of Poets, First Prize. Her writing has appeared in Black Clock magazine, Los Angeles Review of Books, and MotherBoard-Vice, among other places. She was nominated for the Pushcart Prize and given a notable mention in The Best American Essays 2015. She teaches writing at CalArts, the Southern California Institute for Architecture (SCI-Arc), University of California, Irvine, and is Director of the Los Angeles Writers Reading Series at Glendale College. She holds a M.A. in Creative Writing from New York University, and a B.A. in English from San Francisco State University.
“Appendix: Bibliography of First-Person Narratives of Madness in English (Fourth Edition).” From Madness to Mental Health, 2019, pp. 421–452. Project MUSE, doi:10.36019/9780813549095-008.
Courser, G. Thomas. “Disability, Life Narrative, and Representation.” The Disability Studies Reader, by Lennard Davis, Fifth ed., Routledge, 2017, pp. 450–452.
Diagnostic and Statistical Manual of Mental Disorders: DSM-5. CBS Publishers & Distributors, Pvt. Ltd., 2013.
Frank, Arthur W. The Wounded Storyteller: Body, Illness, and Ethics. The University of Chicago Press, 2013, p. 12
Garland‐Thomson, Rosemarie. “Feminist Disability Studies.” Signs: Journal of Women in Culture and Society, vol. 30, no. 2, 2005, pp. 1557–1587. JSTOR, doi:10.1086/423352.
Green, Huw. “Why Does the Diagnosis of Schizophrenia Persist?” Philosophy, Psychiatry, & Psychology, vol. 25, no. 3, 2018, pp. 197–207. Project MUSE, doi:10.1353/ppp.2018.0029.
Kafer, Alison. “Un/Safe Disclosures.” Journal of Literary & Cultural Disability Studies, vol. 10, no. 1, 2016, pp. 1–20. Project MUSE, doi:10.3828/jlcds.2016.1.
Kleinman, Arthur. The Illness Narratives: Suffering, Healing & and the Human Condition. Basic Books, 1988, pp. 130, 232.
Manguso, Sarah. The Guardians: An Elegy for a Friend. Picador, 2013, pp. 16 17 33 34 35 36 37 69 74 80.
Mattingly, Cheryl F. Health, Illness and Culture: Broken Narratives, by Hydén Lars-Christer and Jens Brockmeier, Routledge, 2011, p. 73.
Sommer, Robert, et al. “A Bibliography of Mental Patients’ Autobiographies: An Update and Classification System.” American Journal of Psychiatry, vol. 155, no. 9, 1998, pp. 1261–1264. Project MUSE, doi:10.1176/ajp.155.9.1261.
Today Show, director. Stanford Grad Shares Misdiagnosis Story to Help Others with Mental Illness. TODAY.com, http://www.today.com/video/stanford-grad-shares-misdiagnosis-story-to-help-others-with-mental-illness-59178053993.
Wang, Esmé Weijun. The Collected Schizophrenias: Essays. Graywolf Press, 2019, pp. 4 10 11 12 15 71 77.
Wasson, Sara. “Before Narrative: Episodic Reading and Representations of Chronic Pain.” Medical Humanities, vol. 44, no. 2, 2018, pp. 106–112., doi:10.1136/medhum-2017-011223.