"Healing Through Stories: Lessons from Madness Memoir" by Erica Goss
After my eldest son was diagnosed with schizoaffective disorder, reading about mental illness became a constant, gripping activity, practically an addiction. I brought books about this topic with me everywhere I went. Much of my reading took place as I sat in various waiting rooms during my son’s appointments with one or another of his health care providers. I read and read and read, absorbed in story after painful story—Mira Bartók’s precarious existence as the daughter of a dangerously psychotic mother, for example (The Memory Palace) or Esmé Weijun Wang’s bout with Capgras delusion, a belief that family members have been replaced by doubles (The Collected Schizophrenias).
At my local public library, I regularly searched the shelves for books written by and about those diagnosed with schizophrenia or bipolar disorder. When I got home, I picked the books up and held them against my chest, one at a time. Each book seemed to vibrate, as if the stories within it were about to burst from between its library-issue, plastic-coated covers. Which would be my next read? Should it be Hurry Down Sunshine: A Father’s Story of Love and Madness by Michael Greenberg or Miriam Feldman’s He Came In With It? What about No One Cares About Crazy People by Ron Powers?
It might seem that my motivation for reading these books was rooted in self-help. To be sure, plenty of self-help books exist for people like me who’ve watched a loved one struggle with their mental health: The Family Intervention Guide to Mental Illness by Bodie Morey, for example, or You Are Not Alone: the NAMI Guide to Navigating Mental Health by Ken Duckworth. These books contain a wealth of practical information sourced from doctors and clinical experts, and I consulted many of them in the early days of my son’s illness.
But my craving for stories went beyond self-help. I needed to know that others had endured what my family was going through, regardless of the outcome. For that, I turned to memoir, and I learned so much more from memoirs than from self-help books.
Memoirs described situations I’d been through, and ones that I would likely face in the near future. Like Tanya Frank in Zig-Zag Boy: A Memoir of Madness and Motherhood, I had left my adult son in a psychiatric facility on an involuntary hold; like Michael Greenberg, whose daughter had a psychotic break at the age of fifteen, I refused to accept the bleak future doctors predicted for my child. I became a tireless advocate for him, as Frank and Greenberg did for their children. Within these narratives, I began to discern a path through my own experience; like their narrators, I needed deeper reservoirs of strength. From the books I read, I soon realized that our culture of silence around mental illness would require me to deal with my son’s care alone, or nearly alone. With few peers, I relied on madness memoir for guidance.
The shock waves of a mental illness diagnosis affect not only the affected person, but the entire community, plunging family members, friends, and neighbors into a state of chaos. The previously bright and talented individual, a budding artist, for example, or a promising musician, becomes a stranger who frightens people. Gripped by disturbing beliefs, the person behaves inexplicably. Greenberg describes the changes in his daughter Sally after she became manic: “Her voice pierces me like a dart. She is flushed, beautiful, unfathomably soulless.”
These memoirs taught me that no matter how strangely my son behaved, he was still, at least on some level, reachable. I learned never to give up on him, even during our bleakest moments. As I absorbed the stories of other families, I was able to fit our experiences within a range of possibilities, from optimistic to dire. One of the most surprising things I discovered was that mental illness, like so many things in life, exists on a spectrum, from severe to mild. Although he seemed deeply afflicted, my son was actually fairly high functioning, something I wouldn’t have known had I not read so widely. This fact alone helped me maintain a sense of hope.
And hope is in short supply in many of the stories I read. Mira Bartók’s mother spent twenty years living on the streets of Cleveland; Ron Powers’ youngest son took his own life. Both had been diagnosed with schizophrenia. And yet their stories were full of concern and devotion. People loved them and tried to help them, in spite of the medications that stupefied them, discouraging prognoses from uncaring psychiatrists, and, usually as a last resort, hospitalizations. No matter how sick they were, or how strangely they behaved, someone cared about them.
I kept reading, and learning, even as the stories became darker and more discouraging. Some of them offered moderately hopeful endings: the person diagnosed with a mental illness achieves a level of stability or makes a partial recovery, for example, able to live semi-independently with help from caregivers. In a few rare cases, such as those of MacArthur genius and UCLA professor Elyn Saks or Esmé Weijun Wang, a New York Times bestselling author, people with mental illnesses achieve high levels of success even while hearing voices, seeing hallucinations, and experiencing extreme mood swings.
Most of the stories I read did not end this way. Instead, they ended with homelessness, incarceration, and addiction. Saddest of all, some ended when the person struggling with mental illness committed suicide.
Clearly, I wasn’t reading to achieve a sense of closure, or to seek an elusive happy ending. Most of the stories I read did not inspire any lasting sense of confidence in my son’s future. I kept reading, though, searching for something beyond the stories themselves, even though I wasn’t always sure what, exactly, I was looking for. Perhaps I hoped for camaraderie, or even just knowing that someone else had gone through the same thing I faced and lived to tell the tale, a quality these books all shared. Whether it was Tanya Frank’s frustration at finding an acceptable living situation for her son, or Esmé Weijun Wang’s indignation at Yale University’s lack of support for mental health, I felt a strong connection with these narratives. Despite a lack of easy answers, they helped me persevere. After reading them, I was determined to keep going.
One of the most important lessons I learned from the books I read was that after a loved one receives a diagnosis like schizophrenia, a long period of grief is completely normal, similar to grieving after the death of someone close to you. The dreams I had for my son’s life were no longer viable, and neither were his. This grieving period came with a host of unexpected, unintended cruelties: for example, while my son was struggling with his mental health, the world moved on: his friends began their lives as young adults, attending college, working, traveling, and forming relationships. And, as my son’s illness deepened, extending over months and years, friends and family stopped asking how he was doing, calling to check on us, or even acknowledging the fact that our lives had changed forever. Our social circle shrank as we dealt with emergency after emergency. At the end of many days, I collapsed into an exhausted stupor, a glass of wine in one hand and a madness memoir in the other.
As I read my way through the madness memoir canon, I recognized scenes that echoed my own experiences. When Michael Greenberg described the effects of the bipolar disorder that struck his daughter, I saw the expression, rigid and unfathomable, that came over my own son’s face: “Her normally warm chestnut eyes are shell-like and dark, as if they’ve been brushed over with lacquer.” Another parent had seen his child change literally overnight, an experience that left him reeling and bereft.
Greenberg’s account of his daughter’s first manic episode is as harrowing as any battlefield report. After accosting strangers, walking into oncoming traffic, and physically attacking her father, she tries to explain what’s happening in her mind: “No sooner does one thought come galloping out of her mouth than another overtakes it, producing a pile-up of words without sequence, each sentence canceling out the previous one before it’s had a chance to emerge.” And yet, no matter how his daughter acts, he stands by her, supporting her even when her behavior shows no signs of improvement. Through books like Hurry Down Sunshine, I learned that even when our efforts result in no definitive conclusions, as in the lived experience of so many people facing mental illnesses and their caregivers, the fact that someone recorded them is meaningful.
Reading madness memoirs opened my eyes to the territory of mental illness, its terminology, gatekeepers, and expectations, and the dark history of how the public continues to treat people diagnosed with thought and mood disorders. The books seemed to be speaking to me and to each other, each one a voice calling for change, for compassion, for just a little bit of understanding. Imagine, the authors of these books declared. This could be your daughter or son. This could be your mother, trying to raise children while floridly psychotic.
And, ultimately, this could be any one of us. Mental illness is an all-too-human condition, even though most of us act as if we could never be the disheveled people we see on street corners, shaking their fists at oncoming traffic. As I learned from the madness memoir, we are all just a neural glitch away from being “normal” one day and “insane” the next. As Tanya Frank discovered when psychosis struck her son, literally changing him overnight, it can happen that fast.
It might seem contradictory, but reading about other people’s mental health struggles helped me survive a difficult time in my life. The outcome of my years of reading was a deep and permanent change in how I viewed this subject. The world has not caught up, though; even today, with the growing mental health crisis evident in young people all around us, the subject is still taboo, still freighted with shame. This is a false narrative, against which the madness memoir stands firm. Taken as a whole, these books attest to the value of honesty, no matter how brutal. They are a crash course in the truth.
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.
