One Family’s Ordeal With Schizophrenia

In 2002, Marin Sardy and her younger brother Tom traveled to a small Costa Rican town for what they hoped would be a low-key beach vacation. The siblings, both in their 20s, planned to spend a few weeks relaxing, learning to surf, and just generally enjoying each other’s company.

BOOK REVIEW — “The Edge of Every Day: Sketches of Schizophrenia,” by Marin Sardy (Pantheon, 289 pages).

And then, one day, Tom began to complain about his face. His bones, he said, had detached from each other, and his jaw had separated from his head. He couldn’t get his face back into alignment, he told Sardy. He began to talk — excitedly and cryptically — about “building matrices” and his plans to swim from Alaska to Japan. His facial expressions turned blank.

Sardy observed these developments with growing alarm. She and Tom had grown up with a mother whose life had been derailed by schizophrenia, and she was well acquainted with its signs and symptoms. “Memories unfurl inside as I watch Tom,” Sardy writes in her intimate, multigenerational memoir, “The Edge of Every Day: Sketches of Schizophrenia.” “It is as if I already know that doctors and medications and hospitals and our efforts will all fail him.”

“The Edge of Every Day” is Sardy’s attempt to come to terms with a fundamentally mysterious disease and how its effects ripple throughout her family. It’s a deeply compassionate book about what it means to love someone who is mentally ill — about how hard it is to truly understand another person’s mind and the importance of continuing to try.

Sardy, who grew up with Tom and their two sisters in Anchorage, Alaska, first became a student of schizophrenia when she was 10 years old. That’s when her mother, who was experiencing delusions of persecution, fled their home in an effort to evade some unnamed menace. Her mother spent months hopscotching around the globe, from Alaska to Hawaii to Algeria to Australia, eventually returning home with armfuls of souvenirs. Over the years, she developed an assortment of other delusions, barricading her family inside their house to protect them from assassins and becoming convinced that her ex-husband, Sardy’s father, had drowned in a tsunami and been replaced by an imposter.

Sardy struggles to make sense of what happened to her mother. “As a child I felt schizophrenia to be a dark, shapeless thief,” she writes. It seemed to her, she says, that her mother “had been stolen.” And when Tom began his slide into psychosis nearly two decades later, answers remained elusive.

Mental illness resists easy explanations; Sardy feels like she is losing Tom, but she’s not sure precisely what she’s losing him to. “Schizophrenia still defies the most fundamental question about it: What is it?” Sardy writes, in one of many passages that deftly weave together the science of the disease and her own experiences. “I can tell you it is a brain disorder that causes distortions in perception, thought, and emotion. I can explain that it arises by way of chemical and physical processes inside the brain. But if I reach much further, I soon arrive at the edge of human knowledge. We have not yet fully grasped how the brain creates perception, thought, and emotion to begin with, let alone such spectacular distortions.”

What is clear, however, is that a chasm has opened up between Sardy and her loved ones. As she writes of her mother: “Her mind is forever in another country, a long-lost homeland that only she has seen. And I am her bridge, even when I can’t see one side from the other.”

Schizophrenia is known to impair what’s called “theory of mind,” or our ability to imagine other people’s internal experiences. But, as Sardy smartly observes, these impairments “go both ways,” and she finds it nearly impossible to understand the lived realities of her mother and brother. Her mother’s world “is a cipher,” she writes, “and in it there are codes I can’t break.” Trying to connect with Tom, she says, “felt as if we were choking in some kind of toxic, slow-burning fog. As if I were reaching for him through it and only half finding him.”

As Tom’s illness worsened, he slipped further and further away. Ultimately, he became homeless, spending numerous Alaska winters without a permanent place to live. (He slept on friends’ couches, cycled in and out of homeless shelters, and spent a period of time living underneath a boat in a neighbor’s yard.) His family members often went weeks or months without seeing him or even knowing his whereabouts. Though he didn’t always grasp the severity of his illness, and rebuffed many offers of help, Tom did recognize that his life hadn’t gone according to plan. He worried about his ability to support himself and was deeply afraid of what the future held.

In 2014, 12 years after that fateful beach trip, he died by suicide. Though it’s impossible to pinpoint what led Tom — or what leads anyone — to suicide, the biological reality of schizophrenia is daunting. Roughly half of those with schizophrenia experience what’s known as anosognosia, or a lack of insight into their own illness, which makes the disease notoriously difficult to treat.

But Sardy also makes clear that society failed Tom at almost every turn. The services and programs Tom really needed — from individual therapy to permanent supportive housing — were unavailable or inaccessible. Instead, he had to contend with the local homeless shelter, which only permitted him to stay for 30 days at a time; the police, who kept locking him up for trespassing, disorderly conduct and other minor offences; the court system, which made “virtually impossible” demands, like requiring him to complete dozens of hours of community service; and the psychiatric hospital that managed to stabilize him and then released him without any follow-up or long-term plan.

And then there was the stigma, the pervasive view of people who are mentally ill “not as sick but as bad,” as Sardy puts it. Although Tom’s symptoms improved considerably on antipsychotics, he went off his meds because he was embarrassed. “This was, it struck me, simply how people die of schizophrenia,” she writes. “It happens by way of suicide or violence or accident, via medication or self-neglect or exposure or some combination of many such things. It happens with the help of stigma and isolation and family dynamics and a horribly flawed system of care. It happens indirectly, slowly or suddenly, often after a long, long slide.”

Sardy can be hard on herself; she admits to not always knowing how to talk to Tom and wonders whether she could have done more to save him. That’s an unanswerable question. But what really shines through this tender, heart-rending book is how hard she tried to reach him.

In the end, she learned to meet Tom where he was. In 2009, after moving to Santa Fe, Sardy flew back to Anchorage for a brief visit. She spent days trying to track Tom down, and when she found him, she bought him lunch. And then she just walked beside him as he ambled around town, listening to his “garbled” thoughts and repeatedly offering him clothes, camping gear, and money.

“But he shook his head,” Sardy writes. “I was getting nowhere. And yet I felt that he was giving me everything. Everything he could find within himself to offer up. It was 30 years’ worth of love and madness distilled into a single summer hour.”

For years, Sardy and her family had been trying to coax Tom back into their world. For an hour, she joined him in his.

Emily Anthes, who has written for Undark, The New York Times, The New Yorker, Wired, and Scientific American, among other publications, is the author of the forthcoming book “The Great Indoors.”