The Collected Schizophrenias Read online

  Esmé Weijun Wang

  * * *

  THE COLLECTED SCHIZOPHRENIAS

  Contents

  Diagnosis

  Toward a Pathology of the Possessed

  High-Functioning

  Yale Will Not Save You

  The Choice of Children

  On the Ward

  The Slender Man, the Nothing, and Me

  Reality, On-Screen

  John Doe, Psychosis

  Perdition Days

  L’Appel du Vide

  Chimayó

  Beyond the Hedge

  About the Author

  Esmé Weijun Wang is the author of The Border of Paradise. She received the Whiting Award in 2018 and was named one of Granta’s Best of Young American Novelists of 2017. She holds an MFA from the University of Michigan and lives in San Francisco.

  PENGUIN BOOKS

  THE COLLECTED SCHIZOPHRENIAS

  ‘A necessary addition to a relatively small body of literature, but it’s also, quite simply, a pleasure to read. The prose is so beautiful, and the recollection and description so vivid … Wang is a highly articulate and graceful essayist, and her insights, in both the clinical and general senses, are exceptional’ Los Angeles Review of Books

  ‘The Collected Schizophrenias is riveting, honest, and courageously allows for complexities in the reality of what living with illness is like – and we are lucky to have it in the world’ NPR Books

  ‘Going beyond her personal story, Wang applies her experience as a former lab researcher at Stanford to add an analytical perspective to The Collected Schizophrenias, which gives readers an inside look into the often-misunderstood intricacies of mental health’ Time

  ‘Necessary and illuminating … A brilliant guide to the complexities of thinking about illness, and mental illness, in particular. It will bring hope to others searching to understand their own diagnoses’ Meghan O’Rourke

  ‘This mesmerizing collection of essays has achieved the rarest of rarities – a meaningful and expansive language for a subject that has been long bound by both deep revulsion and intense fascination’ Jenny Zhang

  ‘A masterful braiding of the achingly personal and the incisively researched …. This book is a vital, illuminating window onto the world we all already live in, but find all too easy to ignore’ Alexandra Kleeman

  ‘You won’t find any pity-baiting, sensationalism, or false positivity here; Wang is so candidly aware that I’d trust her over my own diary’ Tony Tulathimutte

  ‘Esmé Weijun Wang offers us an all-access pass to her beautiful, unquiet mind … Rarely has a book about living with mental illness felt so immediate, raw, and powerful’ Dani Shapiro

  ‘The Collected Schizophrenias is at once generous and brilliantly nuanced, rigorous and bold. It had me rethinking what it is to be well or ill’ R. O. Kwon

  ‘Esmé Weijun Wang sends out revelatory dispatches from an under-mapped land, shot like arrows in all directions from a taut bow of a mind … Her work changes the way we think about illness – which is to say that it changes us’ Whiting Award Selection Committee

  ‘Wang’s clear-eyed look into a complicated reality makes this is an essential read for anyone who better wants to understand why we treat each other – and ourselves – so harshly at any display of weakness; it’s a book of compassion and brilliance, an unflinching look at a topic that has long repelled too many of us’ NYLON

  ‘In writing about her experiences, Wang puts a face to the silent suffering of millions of people. Her searing honesty coupled with the strength of her writing make The Collected Schizophrenias a remarkable look into a little-understood part of the human condition’ Chicago Review of Books

  ‘An intimate, rigorously researched collection’ BBC Culture

  ‘In a voice both laboratorial and poetic, Wang examines her own diagnosis, as well as her PTSD and Lyme disease, with a gentleness and frankness that mesmerizes and demystifies’ The Week

  for Chris

  &

  for everyone who has been touched by the schizophrenias

  Recovery [from schizophrenia], almost never complete, runs the gamut from a level tolerable to society to one that may not require permanent hospitalization but in fact does not allow even the semblance of normal life. More than any symptom, the defining characteristic of the illness is the profound feeling of incomprehensibility and inaccessibility that sufferers provoke in other people.

  —Sylvia Nasar, A Beautiful Mind

  How can I go on this way?

  And how can I not?

  —Susan Sontag

  Diagnosis

  Schizophrenia terrifies. It is the archetypal disorder of lunacy. Craziness scares us because we are creatures who long for structure and sense; we divide the interminable days into years, months, and weeks. We hope for ways to corral and control bad fortune, illness, unhappiness, discomfort, and death—all inevitable outcomes that we pretend are anything but. And still, the fight against entropy seems wildly futile in the face of schizophrenia, which shirks reality in favor of its own internal logic.

  People speak of schizophrenics as though they were dead without being dead, gone in the eyes of those around them. Schizophrenics are victims of the Russian word гибель (gibel), which is synonymous with “doom” and “catastrophe”—not necessarily death nor suicide, but a ruinous cessation of existence; we deteriorate in a way that is painful for others. Psychoanalyst Christopher Bollas defines “schizophrenic presence” as the psychodynamic experience of “being with [a schizophrenic] who has seemingly crossed over from the human world to the non-human environment,” because other human catastrophes can bear the weight of human narrative—war, kidnapping, death—but schizophrenia’s built-in chaos resists sense. Both gibel and “schizophrenic presence” address the suffering of those who are adjacent to the one who is suffering in the first place.

  Because the schizophrenic does suffer. I have been psychically lost in a pitch-dark room. There is the ground, which may be nowhere other than immediately below my own numbed feet. Those foot-shaped anchors are the only trustworthy landmarks. If I make a wrong move, I’ll have to face the gruesome consequence. In this bleak abyss the key is to not be afraid, because fear, though inevitable, only compounds the awful feeling of being lost.

  According to the National Institute of Mental Health (NIMH), schizophrenia afflicts 1.1 percent of the American adult population. The number grows when considering the full psychotic spectrum, also known as “the schizophrenias”: 0.3 percentfn1 of the American population are diagnosed with schizoaffective disorder; 3.9 percentfn2 are diagnosed with schizotypal personality disorder. I am aware of the implications of the word “afflicts,” which supports a neuro-typical bias, but I also believe in the suffering of people diagnosed with the schizophrenias and our tormenting minds.

  I was officially diagnosed with schizoaffective disorder, bipolar type eight years after experiencing my first hallucinations, back when I first suspected fresh hell in my brain. I remain surprised by how long it took. I was diagnosed with bipolar disorder in 2001, but heard my first auditory hallucination—a voice—in 2005, in my early twenties. I knew enough about abnormal psychology to understand that people with bipolar disorder could experience symptoms of psychosis, but were not supposed to experience them outside of a mood episode. I communicated this to Dr. C, my psychiatrist at the time, but she never uttered the words “schizoaffective disorder,” even when I reported that I was dodging invisible demons on campus, and that I’d watched a fully formed locomotive roar toward me before vanishing. I began to call these experiences “sensory distortions,” a phrase that Dr. C readily adopted in my presence instead of “hallucinations,” which was
what they were.

  Some people dislike diagnoses, disagreeably calling them boxes and labels, but I’ve always found comfort in preexisting conditions; I like to know that I’m not pioneering an inexplicable experience. For years, I hinted to Dr. C that schizoaffective disorder might be a more accurate diagnosis for me than bipolar disorder, but to no avail. I believe she was wary of officially shifting me from the more common terrain of mood and anxiety disorders to the wilds of the schizophrenias, which would subject me to self-censure and stigma from others—including those with access to my diagnostic chart. Dr. C continued to treat my condition with mood stabilizers and antipsychotics for the next eight years, never once suggesting that my illness might be something else. Then I began to truly fall apart, and switched to a new psychiatrist. Dr. M reluctantly diagnosed me as having schizoaffective disorder, bipolar type, which remains my primary psychiatric diagnosis. It is a label that I am okay with, for now.

  A diagnosis is comforting because it provides a framework—a community, a lineage—and, if luck is afoot, a treatment or cure. A diagnosis says that I am crazy, but in a particular way: one that has been experienced and recorded not just in modern times, but also by the ancient Egyptians, who described a condition similar to schizophrenia in the Book of Hearts, and attributed psychosis to the dangerous influence of poison in the heart and uterus. The ancient Egyptians understood the importance of sighting patterns of behavior. Uterus, hysteria; heart, a looseness of association. They saw the utility of giving those patterns names.

  My diagnosis of schizoaffective disorder, bipolar type resulted from a series of messages between my psychiatrist and myself, sent through my HMO’s website.

  From: Wang, Esmé Weijun

  Sent: 2/19/2013 9:28 a.m. PST

  To: Dr. M

  unfortunately i have not been doing well for a few days (since sunday)

  by end of sunday i was upset because the day had passed in a “fog,” i.e. i could not account for what i had done all day despite having painstakingly [made] a list of what i had done that day, i could not remember having done anything, it was like i had “lost time”; i was also very tired and took 2 naps (i did not take any more klonopin than usual that day, in fact i would say i took less, maybe 2 mgs)

  monday i realized i was having the same problem; trouble functioning at work, especially with concentration, i would stare at the same sentence for a long time and it would not make sense; i took a nap on a couch in the office; again i felt the day had passed without my existing in it; by 4 i was unsure that i was real or that anything else was real, also having concerns with whether i had a face, but not wanting to look to see if i had a face and feeling agitated at the prospect of other faces. symptoms cont. today

  From: Dr. M

  Received: 2/19/2013 12:59 p.m. PST

  Ok, just re-read this again—definitely sounds more like psychosis is the problem. Increasing seroquel could be the answer (to 1.5 pills—max dose is 800 mgs). I think you may have schizoaffective disorder—a slightly different variant than bipolar I.

  Btw, have you read Elyn Saks’s The Center Cannot Hold? I’d be curious to know your thoughts about it

  Years later, I read between the lines of Dr. M’s brief response. She describes schizoaffective disorder as “a slightly different variant than bipolar I,” but does not specify what she means by “variant”—a variant of what? Schizophrenia and bipolar disorder are both considered Diagnostic and Statistical Manual Axis I, or DSM clinical disorders; perhaps “variant” refers to that broad realm, which includes the worlds of depression and anxiety in its geography.

  Dr. M tosses in, as though it’s an afterthought, a mention of the most well-known schizophrenia memoir of the last thirty years, written by MacArthur Genius Grant winner Elyn R. Saks. The mention of Saks is a potential buffer for her bad news of a terrible diagnosis. It can also be seen as Dr. M’s way of emphasizing normalcy: you may have schizoaffective disorder, but we can still talk about books. In fact, in four years schizoaffective dis order will be a diagnosis that Ron Powers, in his hefty examination of schizophrenia titled No One Cares about Crazy People, will repeatedly call worse than schizophrenia, and in four years, I will draw exclamation points in the margins and argue with Powers in pencil. And yet there is also a predecessor for me to admire: Saks, who used her MacArthur money to create a think tank for issues affecting mental health, for whom schizophrenia has shaped her calling. Those who like to chirrup that “everything happens for a reason” might point to Saks’s research and advocacy, which likely would never have happened had she been born neurotypical, as part of God’s plan.

  This is how the Diagnostic and Statistical Manual (DSM-5), a clinical bible created by the American Psychiatric Association (APA), describes schizophrenia:

  Schizophrenia, 295.90 (F20.9)

  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 thesefn3 must be (1), (2), or (3):

  1. Delusions.

  2. Hallucinations.

  3. Disorganized speech (e.g., frequent derailment or incoherence).

  4. Grossly disorganized or catatonicfn4 behavior.

  5. Negative symptoms (i.e., diminished emotional expression or avolition).

  B. For a significant portion of the time since the onset of the disturbance, level of functioningfn5 in one or more major areas, such as work, interpersonal relations, or self-care, is markedly below the level achieved prior to the onset (or when the onset is in childhood or adolescence, there is failure to achieve expected level of interpersonal, academic, or occupational functioning).

  C. Continuous signs of the disturbance persist for at least 6 months. This 6-month period must include at least 1 month of symptoms (or less if successfully treated) that meet Criterion A (i.e., active-phase symptoms) and may include periods of prodomal or residual symptoms. During these prodomal or residual periods, the signs of the disturbance may be manifested by only negative symptoms or by two or more symptoms listed in Criterion A present in an attenuated form (e.g., odd beliefs, unusual perceptual experiences).

  D. Schizoaffective disorder and depressive or bipolar disorder with psychotic features have been ruled out because either 1) no major depressive or manic episodes have occurred concurrently with the active-phase symptoms, or 2) if mood episodes have occurred during active-phase symptoms, they have been present for a minority of the total duration of the active and residual periods of the illness.

  E. The disturbance is not attributable to the physiological effects of a substance (e.g., a drug of abuse, a medication) or another medical condition.

  F. If there is a history of autism spectrum disorder or a communication disorder of childhood onset, the additional diagnosis of schizophrenia is made only if prominent delusions or hallucinations, in addition to the other required symptoms of schizophrenia, are also present for at least 1 month (or less if successfully treated).

  Clinicians use these guidelines in order to discern the presence of schizophrenia. Medicine is an inexact science, but psychiatry is particularly so. There is no blood test, no genetic marker to determine beyond a shadow of a doubt that someone is schizophrenic, and schizophrenia itself is nothing more or less than a constellation of symptoms that have frequently been observed as occurring in tandem. Observing patterns and giving them names is helpful mostly if those patterns can speak to a common cause or, better yet, a common treatment or cure.

  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. I’ve 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. Its diagnostic criteria, according to the DSM-5, read as f
ollows:

  Schizoaffective Disorder, Bipolar type 295.70 (F25.0) This subtype applies if a manic episode is part of the presentation. Major depressive episodes may also occur.

  A. An uninterrupted period of illness during which there is a major mood episode (major depression or manic) concurrent with Criterion A of schizophrenia. Note: The major depressive episode must include Criterion A1: Depressed mood.

  B. Delusions or hallucinations for 2 or more weeks in the absence of a major mood episode (depressive or manic) during the lifetime duration of the illness.

  C. Symptoms that meet criteria for a major mood episode are present for the majority of the total duration of the active and residual portions of the illness.

  D. The disturbance is not attributable to the effects of a substance (e.g., a drug of abuse, a medication) or another medical condition.

  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; a 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.

  Though the German physician Emil Kraepelin is credited with pinpointing the disorder he called “dementia praecox” in 1893, it was Swiss psychiatrist Eugen Bleuler who coined the word “schizophrenia” in 1908. Bleuler derived the term from the Greek roots schizo (“split”) and phrene (“mind”) to address the “loosening of associations” that are common in the disorder. The notion of a split mind has led to a lousy—as in, both ableist and inaccurate—integration of “schizophrenia” into the vernacular. In a 2013 Slate article titled “Schizophrenic Is the New Retarded,” neuroscientist Patrick House noted that “a stock market can be schizophrenic when volatile, a politician when breaking from party lines, a composer when dissonant, a tax code when contradictory, weather when inclement, or a rapper when headlining as a poet.” In other words, schizophrenia is confusing, off-putting, nonsensical, unpredictable, inexplicable, and just plain bad. Schizophrenia is also conflated with dissociative identity disorder, more commonly known as multiple personality disorder, due to the vernacular use of “split personality” to refer to a disorder unrelated to fractured personalities. And though psychosis is a phenomenon shared by disorders other than schizophrenia, the words “psycho” and “psychotic” are used to refer to everything from obnoxious ex-girlfriends to bloodthirsty serial killers.