The Stories That Save Us
by Claire Phillips
“Don’t worry Claire, you have my genes.” This said by my British astrophysicist father when I called to ask why he had failed to disclose my mother’s actual mental health diagnosis for several years. A man so reticent I didn’t even know he held the John D. MacArthur professorship at Caltech until I did a bit of sleuthing for my memoir, A Room with a Darker View: Chronicles of My Mother and Schizophrenia.
My father wanted to comfort me, obviously. Why should I anguish over the likelihood of passing down a difficult-to-treat illness that had stymied my mother’s career ambitions and added much fuel to the volatile relationship we had? I had barely survived my teen years, living with a parent whose nightly tirades and paranoid accusations were so shame-inducing that suicidal ideation was my constant companion. If it weren’t for the ABC Afterschool Specials that ran in 1970s, with their foreboding messages for teenage runaways, I would have surely ditched my economically stable suburban home for the streets.
I was an awkward Jewish teen with frizzy dark hair and deep insecurities. I didn’t think I would command the same attention as the lithe blondes with their cut-off jeans on TV, hitchhiking along idyllic stretches of the Pacific Coast Highway, but I didn’t want to take any chances. Enduring my criminal defense lawyer mother’s barbarous insistence that I was selling her secrets to the district attorney seemed the safer bet.
But, just like those runaway teens on television, I would eventually leave suburbia and find myself living in California when I enrolled at San Francisco State University, with its self-aware student body and strong ties to an alternative arts scene.
By the end of my freshman year, my mother’s untreated psychosis, one that she had endured for several years while making long commutes into New York City from New Jersey to appear in court on behalf of her clients, became too much for her. An impending divorce from my father and the subsequent loss of custody of her son would be the final blow. She would finally receive the psychiatric care she had needed desperately for too long after becoming catatonic in a Texas airport while visiting her sister.
Shortly after her commitment, I was told my mother suffered from manic depression. I would not learn of her actual diagnosis until years later, when my brother confided in me that she suffered from paranoid schizophrenia. Suddenly, at 25, I had a moral dilemma to contend with, one even larger than agonizing over my mother’s well-being or finding a job that didn’t require an allegiance to late-stage capitalism.
What if I passed on her illness to someone else? I did not see myself as well-equipped to manage such an outcome.
While researching my mother’s newly-diagnosed-to-me illness at the local library, I confronted the question of hereditability. I found the statistics alarming. According to one book by a journalist whose son had a diagnosis of schizophrenia, as a child of a parent with schizophrenia, I had roughly an 18% chance of inheriting this illness but any child of mine’s chances grew to be as high as 33%. One in three. Even if environment were a factor in the advent of this illness, and I somehow turned out to be a better parent than my maternal grandparents had been, I couldn’t see playing those odds.
While the statistics may cut differently now, researchers still agree that one of the biggest risk factors for schizophrenia is heritability. According to the National Alliance on Mental Illness (NAMI) schizophrenia is caused by “a complex interplay of genetics and environmental influences….your likelihood of developing schizophrenia is more than six times higher if you have a close relative, such as a parent or sibling, with the disorder.” Treatments are more successful despite the fact that the etiology of many of the “collected schizophrenias” is no less mysterious, and the stigma and misunderstanding of mental health disorders is less egregious.
In my early twenties, watching my mother struggle with strong extrapyramidal effects of the first-generation antipsychotic, Haldol —what doctors used to call “good ole vitamin H” for its magical ability to quell the hallucinations and delusions of schizophrenia— the dystonia, the continuous spasms and muscle contractions, the parkinsonism facial tics and muscular rigidity, I couldn’t fathom passing on such a daunting illness. An illness that might easily transform someone like me from an intimate family member into a formidable foe.
The thought of watching anyone else suffer in the same way as my mother had from what author Susannah Calahan in Brain of Fire calls “humanity’s most mysterious malady,” enduring relapse after relapse despite her best efforts to stay stabilized on antipsychotic medicine, was more than enough to make me seriously reconsider biological birth.
Had my mother received proper treatment much earlier on, she would not have needed to be placed on such a large dosage of Haldol. She might not have suffered such extreme side effects from her medication. She might have lived longer and had a more fulfilling life. My life could have been, if at least not wildly different, less troubled.
In the late ‘70s, not only was medical treatment primitive when my mother’s psychotic break took place, popular culture was bereft of illuminating narratives that might have helped my family and me identify what was happening.
During my high school years, I had listened to my mother laughing uncontrollably alone for hours at a time. While on the phone with friends, I would stretch the long cord of the wall-mounted landline in the kitchen out into the hallway. “Listen, can you hear that? She’s alone in her bedroom.”
I had no better way to describe my mother’s behavior than to declare her “neurotic.”
“You don’t understand,” I would repeat. “She’s really, really neurotic.”
There were no depictions on television of schizophrenia or bipolar disorder to help me define what was happening in my home. Language would fail me.
Luckily each decade would provide us with some improvement. In the ‘90s, while not always under the best of circumstances, my mother began to receive better treatment. Second-generation antipsychotics like Seroquel hit the market. These medications are demonstrably better at not just quelling the notorious symptoms of schizophrenia —the hallucinations and delusions— but also the more difficult to treat symptoms like the anhedonia, or lack of social interest, that contributed to an unhappy isolation from most everyone but her immediate family members.
Just as medical treatments have improved, so too has awareness. Today there is a virtual tidal wave of cultural production, from first-person memoir accounts to serialized television. Literary nonfiction like The Collected Schizophrenias by Esme Weijun Wang, The Guardians by Sarah Manguso along with shows like Showtime’s Shameless, with its generational depiction of bipolar disease, or the Netflix film Horse Girl with its compassionate and convincing portrayal of schizophrenia, make pinpointing the telltale symptoms of mental illness so much clearer, and they are now often depicted through the eyes of the person experiencing illness.
Heritability has also become a virtual literary trope itself. Stumbling one night across the Netflix series Spinning Out, I experienced a glut of feeling. Thrilled to see a mother and daughter hash out the ordeals endured by those who struggle with a complicated illness like bipolar disease, I also felt a sharp pang of envy. Here were a mother and daughter grappling with the shadow side of illness: its disavowal and potentially difficult treatment. Carol Baker, played by January Jones, whose unwillingness to stay on her medication and subsequent “risky behavior” has lost her the opportunity to perform as an Olympian skater, lives somewhat vicariously through her daughters, who are attempting a similar career trajectory.
The catch? Both Carol and eldest daughter Kat grapple with bipolar disorder. And just like with most families, the good is passed down with the bad.
The good: Carol insists Kat stay on her medication, knowing the pitfalls of defying doctor’s orders. Kat eventually falls off the wagon, so to speak. Like her mother she struggles to stay on medication notorious for dampening an energetic drive, which is paramount for those eager to excel in a competitive field.
On the flip side, Kat is remanded to lie about her illness: Not to tell her ice-skating partner and lover about the condition she must carefully manage. The fallout is hectic and relatable.
The family narrative is now inclusive of one more thread. Mother and daughter share the experience of monitoring an unasked-for inherited illness, and a willingness to treat and manage a common affliction together.
Not having chosen motherhood, the potential to pass on a difficult-to-treat mental health disorder being only one factor among many — a preference for financial independence and a powerful obsession with the arts being the others — I will not know first hand the joys and perils of parenthood.
What I do know is that medical secrecy denied me a healthy bond with my mother. Apparently even my mother’s father, a world renowned doctor practicing subtropical medicine in colonial Southern Africa, had no inkling of her troubles until it was far too late. The prodromal stage of her illness, the interim period between experiencing the initial stages and its full-blown symptoms, was long in my mother’s case—a decade or more. No one in the immediate family, my brother, my father or I, had any real sense of what was happening.
In her forties, after my mother received a proper diagnosis and treatment and the secrecy that undergirded my upbringing fell away, her disease still held me in its grip. I had never dreamed of writing about my mother’s experience of illness. Only after her health finally floundered after years of poor management by her psychiatrists did I determine to write our story. I had never wanted to harm my mother, making her story a source of my creativity, but I had had enough of the mishaps in battling the medical system for appropriate care. I needed to speak out.
In the last year of her life, watching my mother battle the new delusions and hallucinations that would plague her whenever she relapsed, I knew I could no longer keep silent on the matter.
My mother’s first psychosis, experienced when she was studying for final exams at Oxford University, was a well-kept secret. Had her medical history been shared in a timely manner with her children, we might have had information by which to garner her the help she deserved.
Because no matter the perceived grim details of medical diagnosis and treatment, these are the stories that save us.
Claire Phillips is the author of the memoir A Room with a Darker View: Chronicles of My Mother & Schizophrenia and the novella Black Market Babies. She is the recipient of the Academy of American Poets prize and a Pushcart Prize notable. Her writing has appeared in Black Clock magazine, The Brooklyn Rail, Largehearted Boy Blog, the Los Angeles Review of Books, Motherboard-Vice, and The Nomadic Journal, among other places. She teaches writing at CalArts, SCI-Arc, and U.C. 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.
Image: Towfiqu barbhuiya/Unsplash
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