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Last month, I met Marin Sardy, the author of the book The Edge of Every Day, for coffee. She had been my teacher in an online essay-writing class, during which we found out we lived near each other. We decided to meet.
Marin was fashionable but understated, in her white flowy pants and simple black top. Once she started talking her fierce intelligence was evident. She was delightfully intense. At one point she talked about the passing of her brother, and her eyes shone with grief. She also seemed to have a core of something solid holding her up. She had loved him, and she refused to let the loss sink her.
I hadn’t yet read her book—a memoir about schizophrenia, which her mother and brother were afflicted by, and which ultimately claimed her brother’s life. But, inspired after meeting her, I bought it and consumed it just days after. Her book is spectacular.
For anyone who works with patients with schizophrenia, schizoaffective disorder and/or bipolar disorder, or their family members, this book is a must-read. It humanizes the illness. It shines light on the intensity of the terror and heart-break families experience. Although her book isn’t a call for mental health care reform, per se, she doesn’t shy away from directly pointing out places where better resources and a more comprehensive mental health treatment system may have been able to save her loved ones. We learn, we grieve with her, and we are engaged throughout.
Marin's Mother
When Marin was 10 years old, her mother started descending into psychosis. It began as an obsession for international travel. She also began to grow paranoid.
“During the first few years of my mother’s illness I witnessed what I can only describe as a disintegration. Once a beautiful woman, leading a healthy engaged life, she transformed into a mistrustful recluse who subsisted on cigarettes and screwdrivers while her teeth rotted away. For a while she nearly imprisoned us in our own house, barring the door with heavy pieces of furniture and having lengths of wood fit to the windows so they could not be slid open. She was so afraid of assassins that her fear seeped into me too. I did as she asked for a long time.”
Although her mother’s symptoms were debilitating, she was still able to function, albeit at a low level. She was hospitalized twice but never received diagnosis of schizophrenia, nor did she admit to having a problem or willingly take medications. All Marin knew as a girl to explain her mother’s behavior was what her father told her: “that she was ‘ill’ and that it was not her fault.”
How confusing that must have been for poor young Marin! And in her book, Marin tells us how she had to have her own dance with folie-a-deux, growing up.
“Reality is slippery. If someone tells you something often enough for long enough, regardless of whether it’s true, you begin to believe it. Or at least you might begin to doubt your own perceptions, think ‘Maybe she knows something I don’t know. Maybe I’m missing something. Maybe there’s something here I don’t understand.’”
Losing her mother in this way was sad, too, and she tells us about that. “How does the child articulate the absence of what is necessary? The absence of sanity. The absence of the mother I had known. To my eye it appeared, more than anything, that she had been stolen.”
Marin's Brother
Then Tom, her brother, younger by three years, began to drift away too. They were close, He and Marin. When she was 27, she went on a vacation with him in Costa Rica. As with her mother, in him, psychosis came on subtly at first—strangers didn’t see it like she did.
“I’ve been having this problem with my face,” he told Marin, at one point. “My jaw. Has come disconnected from the rest of my head. It’s been driving me crazy. I spent like two hours trying to reattach it.” Meanwhile, Marin—who was also grappling with her own young-adult coming-of-age issues—tried to engage with him over it, to connect, to understand, while also harboring a deep fear that this could be the first sign of the same beast that had taken her mother.
Then he got worse. “He was a functioning adult until he was not. But we never knew exactly when or how he lost his apartment, when or how he came to crash on friends’ couches, when or how he began having run-ins with the cops. Nor did we mark the beginning of his habit of walking incessantly—roaming the streets and bike paths of west Anchorage.”
The illness took Tom down from there. Once a back-country skier, avid outdoorsman and mountain climber, he deteriorated. He became homeless, had more frequent run-ins with the law, and was several times hospitalized against his will. When he took antipsychotics, he would stabilize. But, because they cleared up his thinking, he’d be forced to see the truth of his illness. The pain of that would cause him to stop them, Marin surmises. He would slip back into psychosis, and disappear again.
Then came his tragic ending.
What Is Sanity?
Marin often asks us to consider the notion that there is a line between sanity and psychosis and challenges it. What is reality, exactly, when we get down to it? Don’t we all filter what we experience through our own unique perspectives, anyway? She describes the many complicated ways in which her mother and brother’s illness affected them and their loved ones. But she also describes ways that those of us without clinical psychosis distort reality by employing psychological mechanisms like selective amnesia (forgetting swaths of time) and nostalgia (overemphasizing happy memories), because they have a natural “power to simplify” as we look back on traumatic events. These tactics are natural ways we cope and integrate these events in a palatable way into our conceptualizations of ourselves and our world.
The book also delves into denial in family systems, and questions about responsibility and guilt, the neuroscience and cognitive psychology of psychosis, and the wide gaps and holes in our systems of care. We are invited to meditate on the finality of death. We also get to know Marin—the non-schizophrenia aspects of her life—such as her experiences in gymnastics, married life, and a once-captain of industry grandfather who went from rages to riches and then back to rags. And we like her all the more for it.
In the end, Marin’s story is devastating, compassionate, touching, and beautifully written. It’s about loss and grief. It’s also about strength and hope. It’s intelligent and engaging. It’s surprising at times, and also challenging too, in that it sometimes asks us to see ourselves and our own worlds differently. Several sections made me feel deeply, importantly, sad. It is a magnificent effort to try to understand something intangible and, for some, tragic.
References
The Edge of Every Day: Sketches of Schizophrenia. Marin Sardy. Vintage Books. April 2020.
