by Marin Sardy
I was not good at it. When I called Tom at Dad’s house, a little stunned to be so suddenly in contact with him after many long months, I didn’t bring up his circumstances at all. I didn’t know why exactly. It was that same feeling of impossibility I had always had, and maybe, too, I was afraid to say the wrong thing. This was only made worse when Dad told me that Tom had said to him, “Don’t tell my sisters I’ve been in jail.” I knew things I wasn’t supposed to know, and I couldn’t find a way to reach beyond that.
I couldn’t even talk to myself about it, really. Something inside me just stopped—stopped me up. After our calls, I would try to record our conversations in my journal, but every time, I found myself going softly blank, losing the thread. As soon as I touched the keyboard I would feel the air growing thick, resisting my movements. My mind would go still and I would sit as if hypnotized, fingers useless on the keys. Eventually I would give up, stand, walk out into the kitchen and make a salad or open a beer. The words, locked up, lay there until they slipped away, soon forgotten. In one journal entry, after trying and failing, I wrote simply, “Schizophrenia takes even my words away from me.”
* * *
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In the meantime, Tom at least mellowed out. Slowly he began to seem more like himself. He and Dad got along well enough, and Dad talked often to him about making a commitment to getting better over the long term. As Tom reconnected with reality and began to acknowledge he had been delusional, Dad found ways to help him engage with life again. Tom got a job as a cashier and stocker at the giant REI store not far from Dad’s house, where his friend Zach noticed how well he could multitask, chatting with customers and counting money and answering phones all at once—such a change from the distracted, disoriented person he had been. But in other ways, he was far from his old self. At one point, Dad left town for a couple of weeks with Tom as house sitter and returned to find the plants dying and the kitchen strewn with empty beer bottles and cereal bowls. Another time, Dad came home from running errands to discover that Tom had left a burner flaming on the stove.
When I visited home that summer, things seemed okay in a tentative, bland kind of way. Tom’s hallucinations and delusions had faded markedly and his wit had returned. He joked sometimes, smiled a little, sat with us like he wanted to be part of what was going on. But he was stiff and laconic, his face nearly empty of emotion, and he held his body very square—facing forward from the couch, hands resting lightly on knees—no matter how the rest of us were lounging and sprawling. His whole way of being felt repetitive, simplified, restricted somehow—a quality captured surprisingly well in the psychiatric terms I discovered that describe it: stereotyped gestures, flattened affect, impoverished speech. These were among the illness’s negative and cognitive symptoms—deficits, impairments. And in Tom, they were legion.
Perhaps this was why, though antipsychotics were a key starting point, it would take more than pills to heal a brain such as Tom’s. Schizophrenia disrupts many brain functions, from movement to motivation to memory, and often the most debilitating symptoms never fully resolve. In Tom’s case, the risperidone appeared to have only moderately helped with his negative symptoms, even after six months. But we had no way of knowing what dosage he was actually getting—how often he managed to spit out his pills. For a while I thought Tom must have disliked how the risperidone made him feel, but Tom told Dad he felt no side effects, aside from a new sensitivity to cold that led him to sleep under extra blankets. So I couldn’t guess why he resisted the pills. Perhaps, I thought, he simply could not believe that the doubt and boredom that accompanied sanity could be what it meant to get well.
I was conflicted about the mandated treatment. Its existence gave us a chance to help, but the power to compel Tom to take medication was a cold and ambivalent comfort. He had been stripped of so much and now could not even claim the dignity of being in control of the chemicals that shaped his mind. It seemed clear enough that this contributed to his resistance. And yet I could not have taken seriously the idea that he could manage at that time without his medication, especially when I considered how the illness itself was clouding his judgment. All I wanted was for the symptoms to stop.
I would later learn of research that supported this intuition, suggesting that schizophrenic processes actively damage the brain in ways that may be irreversible. Doctors encourage early intervention because preventing or shortening psychosis has been shown to increase a sufferer’s chances of recovery over time. The less time a person spends in a psychotic state, the better his overall functioning is likely to be in the long run and the more likely it is that medication can help him. And we had already spent two years accomplishing nothing.
The work that fell to me was that of listening. We knew Tom would likely never confide in Dad the way he might with Adrienne or me, especially with the stakes as they were. But I was still too hesitant to get anywhere. While we were in town that summer, staying with Tom so Dad could visit his mother in Colorado, I danced around the subject awkwardly, talking only about shallow things, approaching the issue obtusely, trying to somehow secretly glimpse Tom’s thoughts without saying medication or mental illness out loud. It felt like the topic of schizophrenia was just under the surface all the time, pressing up at us both. One day as Tom showed Adrienne and me around REI, he mentioned some idea and I laughingly commented that it sounded crazy. He froze midsentence and then turned to look at a rack of shirts. Adrienne glared at me—accusatory, horrified. I looked back at her sheepishly, as stunned as she was. It was as if the word’s newly taboo quality had forced it from my mouth.
In retrospect, I suspect that Tom wanted to talk to us about his mental health. Or at least wanted it to be easy to talk about. When I think about it now, I just think that we were all so young. I was still new to the concept of recovery from schizophrenia—the idea that, although there is no cure, its sufferers can nonetheless live meaningful and productive lives, often managing their symptoms well enough to get degrees, build careers, find partners. I didn’t yet understand that overcoming the illness wasn’t about shutting it down so much as finding a path through it. None of us really thought that way back then. It didn’t occur to me that non-medication therapies like counseling, skill building, and social involvement might all be integral to Tom’s recovery. And anyway, his mandated treatment plan didn’t offer that kind of help, aside from group sessions with addicts and others he had little in common with.
Tom’s feelings did sometimes come through, however, almost too clearly. When I asked him how he liked working at REI, he said flatly, “It’s really boring.” And he looked at me straight, holding my gaze for a moment to mark his point. I came away feeling a little shaken. I understood that he did not like his life.
* * *
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When it came to Tom’s plans, it was hard to tell if he was just saying what he knew everyone wanted to hear. That fall, Dad got him enrolled in a writing class at UAA, and he obviously enjoyed it. And when winter came on, he and Dad started taking trips up to Girdwood to ski together at Mount Alyeska. Growing up, we had spent countless weekends on that mountain, first with our mother, who taught us to ski after she bought her condo, and then just as often with Dad, who had skied as a boy in Colorado and showed us how to tackle the harder terrain, driving us the hour each way on day trips until he bought a cabin within walking distance of the lifts. Tom, a near-expert skier, clearly loved bombing down the mountain the way he used to. But he still showed little motivation in life outside of the activities Dad coordinated for him. And he insisted that his delusional state wouldn’t happen again. He believed his psychosis was a one-time problem, not a sign of a chronic condition.
Whenever you meet resistance in your efforts to convince a person with schizophrenia to accept care, experts advise, try to work around rigid beliefs rather than attempting to dismantle them. Don’t argue with delusions, they counsel, and don’t focus on points
of contention. Find common ground, any common ground. Listen respectfully and empathize. One book advocated circumventing the question of diagnosis altogether, focusing instead on goals you can both agree on, such as addressing specific symptoms like tormenting voices or difficulty sleeping. This “motivational interviewing” approach, when I learned of it, struck me as brilliant. But in our lives, applying new skills was rarely simple. We tried them haphazardly, sporadically, never fully grasping how they could lead to the breakthrough we desired, never fully able to step outside our own fears and prejudices.
Other times, Tom’s situation was out of our control. At one point, Dad took Tom to meet with a woman about applying for subsidized housing, a benefit for which his illness made him eligible. Beforehand, Dad called the woman and explained the need to tread lightly on the topic of Tom’s diagnosis, as he was sensitive about his mental health and would resist being labeled a schizophrenic. She agreed to be careful, but then during the meeting, as she began explaining the process to Tom, she announced, “As soon as we have your psych eval we can put this paperwork through.” On hearing “psych eval”—psychiatric evaluation—Tom got up and walked out. Dad, beside himself, turned to the woman as he stood to go and said, “That was it. We won’t get another chance.”
In February, Tom graduated from his treatment program. Despite the pitfalls, Dad felt confident about his progress. “He has learned so much in this past year,” he wrote me in an email. But with the state no longer requiring Tom to take medication, he soon said that he wanted to quit the risperidone. His psychiatrist urged him to rethink his decision, but he was sure. They made a plan to slowly taper off the pills over the next five months. Dad was hopeful that if Tom started having psychotic symptoms again he would raise his dose back up, but as spring became summer, he watched Tom slip contentedly back into psychosis.
* * *
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When convincing fails, greater pressure is sometimes recommended. In families, this usually takes the form of firmly establishing conditions and putting forth hard choices between treatment and negative consequences. It is, in the language of addiction, about not being an enabler while also not being overly punitive. When the state does this, it’s called “benevolent coercion”—and Tom had already received some in the form of the CRP court’s treatment mandate. So far it hadn’t worked. Now, as what had been built began again to fall away, Dad applied more of his own pressure, more intensely.
And as he did so, their relationship suffered. Off his medication, Tom became slovenly and forgetful, triggering Dad’s anger and stoking arguments about his future. It was hard to tell how clearly he understood what Dad was trying to do, but any partnership that they had built was collapsing. In July, Tom went off the risperidone altogether. Around that time, he was fired from his job at REI. Their fighting grew worse, culminating one day in August when Tom raged in the doorway, so amped and angry that Dad took pause, stood back, realized he had no idea what was going to happen next. Tom left and did not return.
Where he went, where he slept, I don’t know. But a few days later, when Dad wasn’t home, he broke into the house by jimmying the lock with a credit card and grabbed an old checkbook from his bedroom. It was for the account he had once shared with our mother, but the account had been closed for over a year and he didn’t seem to realize there was no money left in it. He checked in to a quaint little inn downtown and started making purchases. Collectors’ coins, geodes, a framed painting, a silk Persian rug, heart-shaped pendants for some secret or imagined love. The police got involved when an officer spotted Tom loitering and, noticing he was holding several antique silver dollars, started asking questions. Tom said he hoped to sell the items later at a higher price and that he wanted someday to be an art dealer. He ended up showing the officer the checkbook he had used. Within days he was charged with one count of theft and three counts of issuing a bad check. Two of these were felony charges.
The owner of the rug store, it turned out, knew Tom by name and said he had stopped in often to examine the rug, once sitting and staring at it for two solid hours. When Tom checked out of the hotel a week later, he left the rug behind with a note to the general manager, saying that it was a thank-you gift for his stay there. It was worth $2,600.
Dad learned of the arrest when an officer called to question him. As the investigation proceeded, he talked to the attorneys and officers involved, explaining each time that he was sure Tom had not intentionally committed a crime. Tom was deemed eligible for the CRP court again, and ultimately the DA dropped both felony charges. But this time, Tom declined the CRP option. He was done with mandated treatment. In September, he pled no contest to the misdemeanors and spent another month in jail.
* * *
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A look at the message boards on Schizophrenia.com, a website offering information and community for anyone affected by the illness, shows how many others have debated the merits and dangers of coercion, particularly its harshest tactics. One father explains that he is considering telling his son he must move out, though he knows this will lead to homelessness, and a mother counsels him not to do it unless he can stand firm until some good comes of it. Another mother states that she refuses to let her son live with her as long as he resists taking medication, but emphasizes that this doesn’t mean she’s abandoning him, that she still gives him money and shows him respect and affection. A man with schizophrenia expresses gratitude that his own parents never kicked him out when he refused treatment, saying he would not have gotten better without their unwavering support. Another states that if he hadn’t been kicked out he would never have sought help—he had to come to it on his own.
It seems that nothing works for everybody and everything works for somebody—even this harshest alternative, designed as it is to make a person so uncomfortable in his illness that he is pushed to choose treatment. What is most likely to work, what works most often—this I do not know, though related research suggests that the gentler, subtler forms of coercion are more effective, as they enable the sufferer to retain a sense of agency. Perhaps something would have been different, then, if Tom had received individual talk therapy, or if any of us had known how to help him work through his fears. I would learn much later that, in a moment of coherence and vulnerability, he had told his friend Zach outright that he stopped taking the risperidone because he felt “embarrassed.” Embarrassed by his circumstances, by his diagnosis, by the state of his life. It must have just seemed easier not to face it, easier to be psychotic.
Dad, believing that he needed to step up the pressure, considered his next move. I know he thought long and hard about it, carefully weighed the risks of Tom’s living on the street versus continuing on with untreated schizophrenia. I dreaded the idea of Tom being homeless—could not even fathom it, really. But Dad would make the decision on his own and I knew I could not change his mind. And truly, I wasn’t sure that I should. Perhaps it was a hopeless kind of optimism, but I thought maybe it was worth it to let him hit bottom. Maybe, in the words of one family friend, we just needed to wait until Tom got “sick and tired of being sick and tired.”
Dad tried to visit Tom while he was in jail, but Tom refused to see him. So Dad wrote him a letter that he later delivered. It read: “I want you to try and remember how much I love you and care for you.” It read: “It is obvious now that you have a problem that you are refusing to accept” and “By allowing you to live here, I am enabling you to avoid making the decisions that you must make.” It read: “My heart aches to help you.”
Dad explained that he did not intend to let Tom into the house again, but said he hoped he would stay in touch and that he would like to take him to dinner from time to time. He closed the letter with a mention of another young man he had recently met, who had problems similar to Tom’s but was now in recovery and no longer needed to take medication, adding, “It is possible for some, and perhaps for you.” He provided the man�
��s name and phone number and encouraged Tom to get in touch with him.
So Dad made his impossible bargain. He changed the locks and alarm codes to the house. On Tom’s release date, he took him a backpack containing some of his things, including his last paychecks from REI. And Tom became homeless just as winter was setting in.
Mr. Rain Jacket
As Tom’s experience transformed, so did my experience of his experience. I found myself unable to discern a story line in what was happening, to connect the sudden shifts and discoveries that periodically shook me. Tom’s homelessness was to me, perhaps as it was for him, just as Desjarlais suggested—a succession of random surprises that burst like fireworks through long periods of seeming emptiness. Here was my own narrative crisis, my own bewilderment.
* * *
—
How Tom survived so long out on the street eludes me still. Much of it, I’m sure, had to do with his own strengths. Since adolescence he had been deeply concerned with how to live, how to do right by others, how to be. He was quick to defend the weak, to tell you to stop being a jerk, to point out how you were being unfair. In illness, this solidified into a rigid and high-minded moral code to which he adhered strictly, and which seemed to be part of how he avoided encounters with people who could do him real harm.
It was not that he blended in. Aside from his odd demeanor, he carried a large backpack full of rocks—ordinary rocks, rocks that appealed to him, rocks he picked up and examined while walking the Coastal Trail. And for a while he wore a bright yellow fisherman’s raincoat that Dad had given him. I see it flashing like a semaphore through the summer of 2007. It pops up in his court records from that time: large yellow rain jacket; WMA w/ yellow rain jacket.