Published On: Tue, May 21st, 2019

My Brother Tom’s Schizophrenia | The New Yorker

My brother Tom’s slide into homelessness occurred in stages. We never knew exactly when or how he lost his apartment, or came to crash on friends’ couches, or 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 Anchorage, Alaska, our home town, as he would for the rest of his life. Friends and family members told me, much later, that he had been spending whole days driving around the city, marking up a map with notes and arrows, pursuing a delusion about women whom he believed had been kidnapped. Once, wandering and mumbling, he was picked up by police and later told a doctor that he had been fleeing the sensation that he was “about to hear the sound of a woman scream.” Another time, when our father wasn’t home, he apparently jimmied the lock with a credit card and grabbed an old checkbook for a closed account. Then he used it to book a room at a quaint little inn downtown and to make various other purchases: collectors’ coins, geodes, a framed painting, a Persian rug, and heart-shaped pendants for some secret or imagined love.

If you Google “How to convince someone with schizophrenia to get treatment,” you discover a vast network of distraught families grappling for answers. When met with resistance by a person in the grip of psychosis, experts advise, try to work around rigid beliefs rather than attempting to dismantle them. Don’t argue with delusions, and don’t focus on points of contention. Listen respectfully and empathize. On the message boards at Schizophrenia.com, people weigh the merits and dangers of coercion, even its harshest forms. A man with schizophrenia expresses gratitude that his parents never kicked him out when he refused treatment, saying that he would not have got better without their unwavering support. Another states that, if he hadn’t been kicked out, he would never have sought help. Although research suggests that the gentler, subtler forms of pressure may be more effective, it seems that nothing works for everybody and everything works for somebody.

Long before Tom began exhibiting symptoms, in his twenties, our family was familiar with these dilemmas. When I was ten years old and Tom was seven, our mother began showing signs of serious mental illness. Formerly bright and spritely, she, in the grip of illness, neglected herself to the point of malnourishment and became certain that most members of our family were doubles replacing the people she knew. I spent my adolescence watching her deteriorate. Doctors believed that she had some form of schizophrenia, but she maintained that she had no mental illness and refused medication, as she has ever since. When those of us with less spectacular minds attempt to imagine the inner experience of someone like my mother or my brother, we usually fall short. We fail to grasp the deep changes that accompany psychosis—radical shifts in how the mind relates to both the world and the self.

For a time, Tom lived with our father in Anchorage, but he fought Dad’s attempts to keep him on his medication. The fights steadily grew worse, culminating one day when Tom left and did not return. He was soon arrested again, and, when he was released, Dad told him that he could not return home while he remained unmedicated. I was told later that Tom told a friend he had quit his antipsychotic drug because taking it made him feel “embarrassed”—embarrassed by his circumstances, by his diagnosis, by the unravelled state of his life.

Over time, my father, my two sisters, and I considered and discarded various other ideas. Could we get him an apartment? He’d leave something on the stove and burn the place down. What about hiring a personal caregiver? An employee couldn’t be there twenty-four hours a day. What about the Alaska Psychiatric Institute? The A.P.I. didn’t have enough beds to meet demand, so it pushed patients out as quickly as possible. What about a private psychiatric hospital, someplace he could stay longer? There were none in Alaska. What about moving him to a hospital outside of Alaska? We couldn’t force him to stay there, and, once he left, he could go anywhere. We’d never see him again.

So Tom remained on the streets, in the cold of an Alaskan winter. I was living far away, in Santa Fe, unable to do much to help, and I came to rely, for consolation, on certain things that I knew about my brother. He had been a skier, a camper, a mountain climber. He was strong and fit, with a wide-ranging intellect and a practical mind, and, in his early twenties, when he was still a student at the University of Colorado, he had done things like bike through Europe and climb a forbidding Alaskan mountain called the Moose’s Tooth. I knew he had the skills to survive outside, to make a camp in the woods—as long as he could keep track of his gear and find enough food. That was my biggest worry at first—that he was always hungry. Nights, I tried not to imagine the worst possibilities. Instead, I placed him in the safest, warmest camp I could conjure. I led him into the thickets beside the Coastal Trail, built him a snow cave, stuffed him into a fat sleeping bag on a thick foam pad, filled his pack with dry gloves and long underwear, and placed new socks on his feet.

Dad took to scanning the Anchorage Daily News for bits about homeless men, reading closely when a body was found in Chester Creek or Kincaid Park. He stopped taking trips during the winter, wanting to be home to answer the door if Tom stopped by on a cold night. There could be no Christmases, no Thanksgivings, no New Year’s Eves without the wondering.

People helped. A teacher from our high school drew Tom indoors with a ruse: he said he needed someone to read aloud to, picked up “Moby-Dick,” and kept Tom listening as long as possible. A friend’s parents left the door to their vestibule unlocked when they were away, so that he could stop there and warm up. Friends would say they ran into him at the library, or they passed him in their cars. He was standing in the rain. He was in the parking lot beside Westchester Lagoon, staring into space. They cooked him dinner or gave him a few bucks or let him take a shower. They were our surrogates and our saviors, feeding him, keeping him company, keeping him warm.

In 2009, nearly three years into Tom’s homelessness, I made it back to Alaska. It was June, the lightest time of year. Flying in on a clear evening, I got a view of the southern mountains, tangles of peaks and glaciers walling off the city. My goal was to glimpse a way to get through to Tom, to spot an opening to convince him to come inside and get help. I put word out to friends that, if anyone spotted him, I’d like to know. For two days, I did little more than drive around, scanning the sidewalks. It made me feel a little insane, the acute sense of his nearness, the chance that I might drive right past him without noticing.

One afternoon, Dad got a call from his friend Bruce, who said, “I’m looking at Tom right now.” We sprang up and drove to where they were, at an intersection along a four-lane throughway. Bruce had pulled over, keeping Tom in his sight while still on the phone with us. Dad handed me some cash and reminded me to ask Tom if he wanted some new clothes. Waiting for the light to change, I spotted Tom getting up from a bench across the way and ran to reach him. As I approached, he didn’t turn. “Hi, Tom,” I said, unsure if he’d seen me. He wore a heavy gray wool cap and a fisherman’s cardigan, his face ruddy from the summer sun, with a wispy red beard that wandered out in all directions. His fingernails were long, with ridges of dirt beneath them, and his teeth had yellowed deeply. I noticed how thin he was, bonier than I had ever thought his dense frame could be. Glancing my way, he said, “Have you figured out I’m your brother yet?”

I asked Tom if he wanted to go to a sandwich shop across the street. After a brief hesitation, he agreed. As we ate there on the patio, he shifted from topic to topic, circling back, digressing, talking of Catholic priests and the samurai code and a new kind of education system for which he was designing the textbooks. I could hear the schizophrenia in his speech—the clanging. He would repeat a word or pause to spell it, or follow it with words that rhymed, his sentences progressing via not meaning but sound. Eventually, the activity of other patrons started to bother him, so I suggested we go. “I could just walk along with you for a while,” I said, “until you don’t want to anymore.” He stared at me for a moment and then agreed.

For an hour we wandered the woods, following the bike paths around Westchester Lagoon and then through the alders and spruces that lined Chester Creek. When I asked Tom how often he saw our father, he began to ruminate, calling Dad by his full name, as if he were a stranger or a public figure. He was still angry, but his thoughts were garbled, and I suspected that he no longer remembered much about what had happened between them, only that his father had turned him away. He gave me occasional sidelong glances, seeming torn between politeness and mistrust, affection and self-preservation. I asked if he needed any camping gear—a tent, a tarp, a sleeping bag. He said no. I asked where he camped, if it was in these woods somewhere, but he ignored the question. I suggested that he come by the house, for dinner and a shower and some new clothes, but he shook his head. I was getting nowhere. And yet I felt that he was giving me all that he could find within himself to offer up.

As we followed the path up a hill, Tom paused and quietly demanded, “Do you remember the time you tried to kill me?” Abashed, I took a long time to reply. I had, he told me, come after him in a crowd with a pistol. We all had, the whole family. I had shot at him. “No, I don’t remember that,” I finally said. And then, finding my footing, “I didn’t do that.” At the top of the hill, he faced me and said that this was enough talking. Reluctantly, I nodded and held out a bag containing the uneaten half of his sandwich. He took it absently. I let out a few obvious phrases—O.K., I love you, nice to see you, thanks for the walk—and shoved some bills at him. Then he turned back down the hill, rounded a bend, and was gone.

Did I know, back then, that we would lose? As the years passed, Tom grew more entrenched in his homelessness, bouncing in and out of institutions, only intermittently accepting treatment, unable to break his cycles of improvement and deterioration. For a short time, he lived directly across the street from our father’s house, under a boat in a neighbor’s yard. (“Under a boat.” We kept repeating the phrase, as if by turning it over, passing it around like a talisman, we might be able to discern some meaning.) But when it got very cold, and Dad went to see if he was O.K., Tom lashed out, shouting for him to go away, stay away. He was absorbed in his fantasies and private missions, aware of the basest necessities and the most transcendent abstractions, and almost nothing in between. “The world looks at me and sees a bum,” Tom told me one of the last times I saw him, during a trip home in the summer of 2012. He shot me a glance, gauging my reaction. “But I know that I am not a bum,” he continued. “I am a saint. I am close to God.” He shut his eyes and softly lifted his chin.

In February, 2014, a shelter in Anchorage where Tom had been staying changed its policy, and Tom found himself stuck outside in the dead of winter. He overstayed his welcome somewhere and was arrested for trespassing. For the next month, he was held in the local correctional facility’s mental-health unit. His symptoms were as bad as they had ever been—“both auditory and visual hallucinations, pacing, and some symptoms of mania, including not sleeping for periods up to 24 hours,” read the doctor’s notes. His physical condition had deteriorated, as well, and he had a rash caused by either scabies or bedbugs. In March, he was deemed not competent to stand trial and was transferred to the Alaska Psychiatric Institute. The exchanges in Tom’s last intake interview, when I read them now, feel at once bizarre and familiar, absurd and profound. When asked if he had ever had a head injury, Tom said, “I’ve been hit in the head more than anyone who’s ever been.”

By the time Tom contacted our father, that May, he was taking several medications: risperidone, for psychosis; lorazepam, for anxiety; melatonin, for insomnia; and benztropine, to reduce agitation. His condition had improved significantly. He also had a diagnosis: schizoaffective disorder. Dad began visiting him regularly, in the facility’s locked ward. In June, Tom gave permission for my sisters and me to call him. It had been at least seven years since he and I had last talked on the phone, and two since we had stood face-to-face. It felt surreal to simply dial a number from my house and ask for him. Just as baffling, just as easy, was the way he said, in his gentle voice, that he loved me, he missed me, he was glad to talk to me. It was clear right away that he was far, far more coherent than when I had seen him last. But I could also feel the schizophrenia still in his speech, tightening and stilting his thoughts. He left long pauses after I spoke, as if he was struggling to process what I was saying.

I called him four times in as many weeks. He told me that he was reading “The Great Gatsby.” “It’s pretty good,” he said. I asked what he liked about it. “I like the scenes with people just sitting around enjoying each other’s company,” he said. “Drinking beverages and talking to each other. And there’s one part where they all go for a ride in a car.” He added, “It would be nice to do things like that.” I had a feeling that Tom understood, as I did, that, by this point in his illness’s progression, even if he did everything he could to get well, nothing was ever going to bring him all the way back to his former self. “You can do that,” I said, forcing myself. “You can have all those things.”

“I don’t know,” he replied. “I don’t know if I can.”

We were bolstered, briefly, when Tom was deemed competent to attend his hearing, and when, afterward, his release date was pushed back to late July, giving him more time to improve before having to take the next step. His treatment team seemed to be doing their best for him, hustling to find him transitional housing, but, with a chronic shortage of funding and staff at A.P.I., they needed to get him out of their care as quickly as possible. To help prepare him, Dad brought him a new pair of boots. They talked about Tom visiting home again. They played checkers in a game that dragged on and on until they had to call it a draw. “Whatever part of Tom’s brain deals with checkers is still in great shape,” Dad wrote. “I was doing my best to beat him.” He added, “I am not sure how all of this is happening???” For a moment, I allowed myself to feel elated.

But Tom’s fear for his future was deeper than I realized. I learned later that, as his release date approached, he had been checking in with his case manager every day, popping into her office, asking if she was sure that his housing application would go through, wondering if she had got a reply yet. Eight weeks after our moment of optimism, Tom failed to turn up at lunch. When staff went looking for him, they found that he had locked himself in a bathroom. Inside he lay dead.

In the months that followed, I would ask and ask and ask myself what had led Tom to decide to die—what blend of fear and bravery, clarity and confusion, mood and circumstance. I would conclude, for a while, that it was the fragile space between psychosis and sanity that was Tom’s undoing—that zone in which he could see all that his life was missing but was still unable to fix it. Soon, however, that explanation seemed incomplete, as did every other one I tried to come up with. Eventually I would say to myself, Schizophrenia did this. There’s no way to parse it further.

When you go hunting for advice on helping a mentally ill loved one, much of what you find focusses on education: learn as much as you can about mental illness, ask questions, and find a supportive community. In our family, we did all of this, and more—we took classes, consulted experts, conferred with lawyers, and met with people with schizophrenia who had rebuilt their lives. But applying what we learned was rarely simple. Though our efforts often helped us enormously, they did not, in the end, do much for Tom. I wonder, still, what could have saved him. The right kind of therapy early on, perhaps—someone to help him talk through his experiences and come to terms with them. And, later, public programs to enable him, and others with schizophrenia, to participate in society rather than be pushed to its fringes.

At Tom’s memorial, two friends, Kevin and Sean, recalled the early days when he was living on the street. He would sometimes show up at their door, hungry and depleted, and end up camping in their living room for weeks. At first he would consume mountains of food, downing a gallon of milk a day. Like young parents, they would coördinate runs to the grocery store to make sure there was enough. Tom was focussed, at the time, on a plan to swim across the Pacific Ocean to Japan, embarking on a training regimen that entailed standing in their shower, fully clothed, with the cold water running, for hours at a time. Since their home had only one bathroom, Kevin’s girlfriend sometimes had to sneak in to use the toilet in secret. There, at the memorial, she reënacted for us how she’d creep in to pee, watching the shower curtain, trying to hurry out before Tom noticed that she was there. Soon we were all laughing—laughing with Kevin even as he began to cry, as he cried on through his laughter, shaking his head, saying, “Swimming to Japan.”

This text was drawn from “The Edge of Every Day: Sketches of Schizophrenia,” by Marin Sardy, which is out on May 21st, from Pantheon.