"The Madness Memoir: Structure and Heritage in Writing About Mental Illness" by Erica Goss
In Illness as Metaphor, Susan Sontag wrote, “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.” Beyond the kingdom of the sick lies the territory of the mentally ill, an unruly space that looms large and frightening in our imaginations. Few, if any, return from it.
As the parent of a son with schizoaffective disorder, I found myself thrust into that territory. As I attempted to make sense of my family’s crisis, I stumbled on a treasure trove: memoirs written by people who inhabited a subculture I was just beginning to understand. Some were parents of children with mental illnesses, while others were the children of afflicted parents. A smaller group had the conditions themselves. As I read book after book, it dawned on me that they belonged in their own genre. I call this “the madness memoir.”
Other genres of memoir, including first-person accounts of accidents and physical illnesses, share some of the characteristics of the madness memoir. In Judith Barrington’s Lifesaving and Dani Shapiro’s Slow Motion, for example, parents die in a fatal accident. Their surviving loved ones must rebuild their lives in the face of catastrophic loss and its aftermath. Physical illnesses, the category Sontag referred to, make up a substantial proportion of memoir. The narrators of illness memoirs like Autobiography of a Face by Lucy Grealy and Between Two Kingdoms by Suleika Jaouad confront and battle conditions such as leukemia or childhood cancer, watching helplessly as the plans they had depart forever, replaced with a grueling routine of medical treatments, long, painful recoveries, and relapses.
Even though it shares some aspects of accident and illness memoirs, the madness memoir belongs in its own category. After the first episode—i.e., the narrator’s loved one has a psychotic break, or the narrator herself descends into psychosis, treatment follows a fairly standard, if often frustrating path of medication and therapy. Each narrator quickly confronts the limits of effective treatments for mental illness. If that weren’t bad enough, stigma against the mentally ill presents an enormous obstacle to any meaningful path to recovery. The public still holds too many outdated and cruel opinions regarding those who suffer from an illness of the brain, including blaming the victims or the families who so desperately try to help them. Madness memoirs must meet this attitude head-on, exposing details that had previously been regarded as shameful secrets. The authors of these books know they will face public scrutiny and criticism for writing about madness. Their contributions come at considerable personal cost.
My own experience mirrors the narrative in these memoirs. After my son’s break with reality, our family embarked on the traditional, psychiatry-recommended route of medication and therapy. As the months and years passed, however, I found myself in a similar place as the parents of ill children in these memoirs: disappointed, heartsick for my son, and baffled at the lack of meaningful treatments. The worse things got, the more I read, and while I didn’t find comfort, exactly, at least I found a sense of solidarity.
As I read these harrowing accounts, I noticed certain themes. Some of the books, like Tanya Frank’s Zig-Zag Boy: A Memoir of Motherhood and Madness, start with the main character’s first episodes of psychosis: “And this is how it begins, in the laundry room in the late hours,” while Mira Bartók opens The Memory Palace, her account of growing up with a schizophrenic mother, with a backwards look: “Even now, when the phone rings late at night, I think it’s her.”
Madness memoir, sometimes called “mad lit,” also concentrates on how its narrators and protagonists cling to the fragile hope that their psychiatrists hold out, that medications and therapy will allow them to return to the life they had before they were struck with mental illness. They also deal with the real-life impact of anti-psychotic medications. I can corroborate both of these from my own experience: when my son began taking antipsychotics, it affected his abilities to create and to function socially. He was in a fog half of the time, filled with manic energy the other half. Yet his doctors kept assuring us that the right combination existed—it would just take time for them to find it. Be patient, they told us.
At its core, the madness memoir is an effort to impose a literary structure on an inherently disorganized condition. As such, it follows a fairly standard path: a completely normal, often creative and gifted child, parent, spouse, sibling or friend begins behaving inexplicably, often separating from reality and putting herself and others in danger. Then begins a long, frightening journey. Along the way, the beloved child, parent or friend is transformed into a mental patient, given one or more diagnoses, medicated and often hospitalized, and then, quite often in the face of logic, turned loose without any sort of plan. As Mira Bartók writes in The Memory Palace, “Each time we are forced to commit her, each stay at the psych ward at CPI—Cleveland Psychiatric Institute—seems to be shorter than the last.”
As I read these memoirs, I recognized that structure. After all, my family was on the same journey. We didn’t know how long it would take, or where we would end up, but these stories helped me make sense of the long and traumatic nature of that journey.
In Tanya Frank’s Zig-Zag Boy I read of the endlessness of a quest for mental health. It begins with Frank’s nineteen-year-old son Zach’s first psychotic break, when he warns his mother that unknown entities were monitoring them through their home’s long-defunct landline. Frank finds Zach in the laundry room of their house, looking for a tool he needs to cut the lines: “’This is how they’re monitoring us,’ he whispers, his face stricken, his breath sour. ‘We have to cut some stuff out, change the receiver.’”
As Frank attempts to understand what’s happened to her son, she encounters a confusing and often hostile world. Those who would normally provide support and sympathy—i.e., doctors, pharmacists, therapists, family members, and even her spouse, eventually fall away, leaving Frank as the main caregiver for her increasingly debilitated child. Like so many who have chronicled their loved ones’ journeys through madness, she becomes the navigator of a loosely structured system filled with unpleasant surprises, including medication costs not covered by her health insurance: “The pharmacist tells me it will cost twelve hundred dollars” for a prescription for the anti-psychotic Abilify, a drug that causes her son to develop akathisia, a condition in which a person cannot stop moving. He also becomes ravenously hungry, eating huge amounts of food and gaining weight.
Ron Powers wrote No One Cares About Crazy People after his son Kevin, who was diagnosed with schizophrenia at the age of seventeen, committed suicide. In it, Powers alternates the story of his two sons, who both developed schizophrenia as young men, with a grim sequence of systemic failings when it comes to treating mental illness. Thoroughly researched and a captivating, if sobering read, the book contains some truly alarming facts. For example, in the chapter “Antipsychotics,” Powers writes that according to Danish author Peter Gotzsche, “Much of what the drug industry does fulfills the criteria for organized crime.” As Tanya Frank discovered when confronted with the bill for her son’s medication, parents have little recourse beyond pleading with their insurance companies or, as a last resort, incurring debt to purchase drugs that may do more harm than good.
Mentally ill people are not always cooperative in their own treatment, not only because they are sometimes not aware they are ill, but also in many cases because of the damaging or debilitating side effects. The medical profession’s term for this is “anosognosia,” which means “lacking insight.” Although there are some exceptions, cancer patients generally do consent to their own treatments, even when those treatments involve deeply invasive processes such as surgery and chemotherapy, and even when they don’t seem to help.
In contrast, between fifty and ninety-eight percent of people with schizophrenia and bipolar disorder refuse medication, according to the Cleveland Clinic. This makes treatment and recovery extremely difficult for them and their caregivers. To be fair, the treatments that exist for cancer, while not perfect, are much more effective than the standard regimen of psychiatric drugs offered to the mentally ill. The side effects of these drugs include weight gain, facial tics, metabolic disorders, and cognitive impairment. If a mentally ill person suffers from anosognosia, why would he, as in the case of Ron Powers’ son Kevin, subject himself to the additional misery of such medication? After Kevin refuses to take his drugs, Powers calls his psychiatrist to see if there is anything he can do. “The only choice, a ghastly one, was to let our son ‘crash’ again and hope that he would learn a lesson from it.” This is a strikingly callous position—is it even faintly realistic to assume that a person with schizophrenia will ever “learn a lesson” about his mental illness?
Complicating this, Powers and his wife run up against a system that again and again puts the responsibility for their son’s behavior on their shoulders but removes their authority. Parents must advocate for their adult children, who do not, by law, have to accept treatment unless they are deemed a threat to themselves or someone else. In addition, parents are still too often blamed for their children’s illnesses, as Frank writes: “In psychiatry it is the family that is often blamed, thought to bring about relapse—especially the mother, always the mother…It strikes me as contradictory that the biomedical model insists that the illness is nobody’s fault, rather a chemical imbalance, a brain disorder, and yet the family is still deemed to instrumental in causing relapse. How can I be blameless on the one hand, and culpable on the other?”
This is especially difficult for families given that societal responsibility for the care and treatment of the mentally ill is woefully lacking in America. Sometimes people with mental illnesses become homeless. At other times, in spite of the earnest and heartfelt care they receive from people close to them, they die. And in some cases, in order to preserve their own mental and physical health, their caregivers abandon them.
In The Memory Palace, Mira Bartók and her sister are forced to make a heartbreaking decision. As Bartók prepares to graduate from high school and move away for college, she has a realization: “I feel in my bones my mother will always be sick. She might have a week or two of some semblance of normalcy. Maybe even a month. But she will forever be spinning in some dangerous orbit, knife in hand, and if I’m not careful, I will forever be that small child frozen behind the wall.” As the years pass and her mother’s illness progresses without adequate treatment to the point that she calls Bartók constantly, threatens her, and stabs her own mother, Bartók and her sister go underground, changing their names, hiding their true addresses from her mother, and severing all contact except for letters, delivered to a post office box. This comes at a deep emotional cost for Bartók: “I felt held hostage by her illness and by the backward mental health system that once again was incapable of helping our family in crisis. I longed to be far away, in a place where no one knew me, a place impossible to find.” Although Ron Powers and Tanya Frank do not abandon their children, a similar sense of futility and exhaustion weighs heavily on both families. As the years passed, and my son seemed no better, I too experienced this mix of emotions.
Esmé Weijun Wang opens her memoir-in-essays, The Collected Schizophrenias, with this blunt statement: “Schizophrenia terrifies. It is the archetypal disorder of lunacy.” By its very nature, madness threatens our human need for reason and security. In particular, schizophrenia “shirks reality in favor of its own internal logic.” As Tanya Frank puts it after Zach’s break, “I don’t know what to say, what to do. There is no protocol for this new territory. I feel sweat break out on my palms and the back of my neck.”
These memoirs allow the writers to compartmentalize the chaos that accompanies mental illness. Frank’s act of recording Zach’s illness in a clear chronology puts a container around it, making it somehow more bearable. The structure of Wang’s book, a collection of thirteen essays, also manages to confine the story she tells. Even the word “collected,” which appears in title of the book, implies a sense of order. Within these essays, Wang struggles with her illness, with multiple diagnoses, with depression and anxiety, but each essay feels complete and constructed. This act of enforcing boundaries around trauma connects the reader to the material, making it more relatable. This happened to me, Wang tells us. It could happen to you.
That madness memoirs sometimes seem to trail off is due at least in part to the fact that no satisfactory ending can ever truly exist, given our current treatment of those our culture deems insane. While more humane treatments and systems of care have emerged elsewhere—Italy’s Trieste Project is one example--no one in America seems able to imagine a world where the mentally ill have a place to thrive, not hidden behind the walls of a hospital, or living on the street, but as valued members of the community. In contrast, cancer patients, accident victims, and those with chronic diseases who recover or manage to endure their conditions enjoy a status in our culture as respected survivors.
In the final essay of The Collected Schizophrenias, Wang writes of her quest for clarity in the face of the anguish of her mental illness. She quotes Viktor Frankl’s classic work, Man’s Search for Meaning: “We want our suffering, if it must be endured, to mean something.” And Wang ends the book with this declaration: “I tell myself that if I must live with a slippery mind, I want to know how to tether it too.”
In a time when I thought no one understood my family’s situation, I found kindred souls in madness memoir. The characters in these books became my friends and role models when no others existed. Each book contained vital information that helped me navigate my son’s recovery. As I read, I found compassion, frustration with treatment options, and many ideas for better ways to help those suffering from mental illnesses. A wealth of human experience lies between the pages of these books, if we would just pay attention.
Erica Goss is the author of Night Court, winner of the 2017 Lyrebird Award from Glass Lyre Press. Recent and upcoming publications include The Colorado Review, The Georgia Review, Oregon Humanities, Creative Nonfiction, North Dakota Quarterly, Gargoyle, Spillway, A-Minor, Redactions, Consequence, The Sunlight Press, The Pedestal, San Pedro River Review, and Critical Read. Erica served as Poet Laureate of Los Gatos, California, from 2013-2016. She lives in Eugene, Oregon, where she teaches, writes and edits the newsletter Sticks & Stones.
