My Brother Tom's Schizophrenia: by Marin Sardy

5/27/2019 My Brother Tom’s Schizophrenia | The New Yorker
Personal History
My Brother Tom’s Schizophrenia

By Marin Sardy May 20, 2019
Illustration by Katrien De Blauwer; Source Photograph by Russell Waggoner
y brother Tom’s slide into homelessness occurred in stages. We never knew

M 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 eeing 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
https://www.newyorker.com/culture/personal-history/my-brother-toms-schizophrenia 1/10
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 ghts 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. He’d leave something on the stove and burn
the place down. An employee couldn’t be
there twenty-four hours a day. The
A.P.I. didn’t have enough beds to meet demand, so it pushed patients out as quickly as
possible.
There were none in 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 t, 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 nd enough food. That was my
biggest worry at rst—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, lled his pack with dry gloves and long
underwear, and placed new socks on his feet.
Dad took to scanning the Anchorage 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
Moby-Dick,” and kept Tom listening
he needed someone to read aloud to, picked up “Moby-Dick
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.
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n 2009, nearly three years into Tom’s homelessness, I made it back to Alaska. It was
I 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 sherman’s
cardigan, his face ruddy from the summer sun, with a wispy red beard that wandered
out in all directions. His ngernails 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 gured 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.
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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 gure. 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 nd 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 nally said. And then, nding 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—
—and shoved some bills at him. Then he turned back down
the hill, rounded a bend, and was gone.
id I know, back then, that we would lose? As the years passed, Tom grew more
D 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 signi cantly. 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
Gatsby
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, brie y, 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 nd 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 x 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
nd focusses on education: learn as much as you can about mental illness, ask questions,
and nd 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 rst 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 Paci c 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.”
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5/27/2019 My Brother Tom’s Schizophrenia | The New Yorker

My Brother Tom’s Schizophrenia

Illustration by Katrien De Blauwer; Source Photograph by Russell Waggoner

y brother Tom’s slide into homelessness occurred in stages. We never knew

VIDEO FROM THE N YORKER

Dreaming Gave Us Wings

Sudan’s Uprising, My House in Cairo Fake News, 1969: My The Th

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

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