Then things lapsed into true chaos. When I asked Jackie about her medications, she explained that she couldn’t take birth control pills because she didn’t want to have varicose veins. “But I don’t think any man except my dad’s spirit could make me pregnant,” she said. “It says so in the Bible that he wrote. I feel responsible, just like Jesus Christ felt responsible when he handed out two thousand cigarettes. They weren’t pans of bread. They were cigarettes, in my opinion. That’s why she keeps killing my daughters that I had with my dad’s spirit. One of them is ten years older than me for some reason. The other one I gave a dollar and twenty-five cents for a soda. I much prefer to have babies off women. Most people don’t admit that they’re gay, and they are. They’re all gay in my opinion.”
Then she looked at me closely and suddenly said, “Would you like more cucumbers?” and offered me the dish. I took some more cucumbers. “I really like my day program,” she said, “and I have a real connection to poetry, too. I love making art. It’s a real pleasure in my life these days.” As seamlessly as we had crossed into psychosis, we were back on solid ground. Jackie was clearly unaware of the shift. Charlotte later said, “It comes and goes. It doesn’t seem to be much harm to anyone, including her, though it takes some getting used to.”
Electa has few intrusive delusions. “If what Jackie has is schizophrenia,” Charlotte said, “I am inclined to think Electa is being medicated for an illness she doesn’t have. But of course she does, really; it’s just such a diffuse condition.” Electa’s negative symptoms are far more pronounced. “I just feel lethargic,” she said. “I have to really psych myself up for grocery shopping. I can only do it once a month. So I eat a lot of stale things.” When I asked Electa about the time when she had gone off her meds and been so ill, tears welled up in her eyes. “I wanted to feel high again,” she said.
“I’ll help you!” Jackie interrupted. “Wait here,” she ordered, and ran off to find copies of her own recent poems. One of them was nearly gibberish, but the other contained these lines:
And when I tried to find the
lover to show her how much I
loved her, all I found was
emptiness and frenzy
with that loud sound in the
background drowning out my
voice every four seconds . . .
The “loud sound” is the intrusive voices, rising relentlessly and constantly over any attempt at a rational mind—and a rational mind wrote this poem, which seems startlingly full of self-knowledge for the work of someone who believed she had conceived four hundred babies with her father. I thought of the Erinyes in pursuit of Orestes, the senseless anguish of a ceaseless, externalized torture. I said to Charlotte, “You do have your hands full.”
“Sometimes life isn’t about choices,” she replied.
• • •
When a patient’s resolve to continue with a detested medication fails, family members are often the first to notice and intervene—despite the obstacles the patient may devise. The parents’ affection always aspires to reawaken a comparable emotion in its object. Like those who have autism, people with schizophrenia are often described as incapable of emotional attachment, but this is seldom true. “The blunted affect or emotional vacancy that’s become a stereotype of schizophrenia is not blunted all the time and in many cases is not blunted most of the time,” Deborah Levy said. Schizophrenia experts Larry Davidson and David Stayner write, “While perhaps appearing as wooden and vacant to others, and perhaps also feeling at an extreme emotional distance even from themselves, people with schizophrenia continue to describe a fervent wish for love and relationships that contrasts starkly with the empty shell image.” Parents would do well to know that to most schizophrenics, a penumbra of affection is reassuring, even if it does not seem to penetrate their isolation.
Patients who have a trusting relationship with someone—a parent, a friend, a doctor—are more likely to take their medication. “About forty to fifty percent of my patients are noncompliant,” said Jeanne Frazier, who works primarily with younger patients at McLean. “Sometimes they will come to me and say, ‘Dr. Frazier, I’m feeling better and I want to stop my medication.’ It becomes very clear with some that if I don’t join them in their wish, they are going to do it anyway. So I say, ‘I don’t think it’s the wisest thing to do, because you will run the risk of recurrence. But maybe at this point in your treatment it’s important to find out for sure.’ Then we come up with a plan to taper their medication by about thirty percent every week. I’ll say, ‘I want to support you in what you feel needs to happen. But you have to promise that you and/or your parents will page me immediately if you start hallucinating. You need to agree that if that happens, you’re going right back on your medication.’ I tell the families about the potential for suicidal ideation. Almost all of them have recurrence of symptoms and realize that they really need the medication. It’s a learning process. If you really are decompensated, you lose all self-knowledge, but when you are beginning to decompensate, you know that there’s something wrong. They become scared. Then, hopefully, they tell me.”
The mother of one schizophrenic told me that her son’s therapist had him write out a motto and post it on his refrigerator. “It says, ‘I am a good person and other people think I’m good, too,’ and it has had an enormous effect on him,” she said.
• • •
George Marcolo had a lot of friends in high school in New Jersey. He had been a pothead in his teens, and in his senior year he took LSD. A few weeks later, he decided to try it again, but instead of taking one tab, he took four. “After that, things sort of felt weird,” he recalled. “I think the acid sped up the progress of the disease, which I guess was already in me.” In college, George was a brilliant physicist. “He is the smartest person in our family,” his father, Giuseppe, said. George remembered, “November first, 1991, when I was at Boston College, I woke up and I felt like I was on acid. I had not taken anything or done anything. That didn’t go away for eight years.” George went to a doctor on campus, who said that it would pass. At the time, George accepted that; now he is outraged. “If I heard somebody say, ‘I feel like I’m on drugs, but I’m not on drugs,’ I’d be like, ‘We’d better get you checked out.’”
He was loath to tell his parents or friends what was going on. “I was afraid they’d think I was insane. I substituted alcohol and pot for medicine. Everything was amplified. Food tasted really bad. If I had taken meds back then, I could have avoided eight years of that.” Despite his symptoms, he kept up a 3.7 average in physics. “But it is progressive,” George said. “The voices became more and more prominent.” He took a job with a dot-com start-up on Wall Street. After a few months, he stopped going to work, and nothing his parents could say or do would get him to go back. George’s parents had divorced when he was in high school, and he was living with his mother, Bridget. She explained to me, “Young men get out of college and somebody has to kick-start them because they don’t realize that they are supposed to make a life. I thought he was in an extreme form of that. I was concerned, sometimes exasperated. But I didn’t see the real problem.” Things grew stranger. “He said he knew what the neighbors were thinking about down the street,” Giuseppe recalled. Bridget was bemused. “Still, I didn’t think there was psychosis,” she said.
The Marcolos insisted that George see a therapist, and after about four months he shared that he had been hearing voices. “I was so frightened that I didn’t even think of the word schizophrenia,” Bridget said. It took some months for the Marcolos to find their way to David Nathan, a Princeton psychiatrist who has worked with people with thought disorders; he instantly recognized the severity of George’s illness and put him on medication. George has not had a job since that postcollege stint on Wall Street.
George used to hide pills in the side of his mouth and spit them out when his parents weren’t looking. During a relapse, he crashed his car three times. He finally became medication-
compliant after a decade. His voices are persistent, but somewhat banal. “Sometimes they say critical things, but I can ignore that,” he said. “Some voices are jerks, you know? You end up having the same conversations sometimes, with a new voice that doesn’t know what you told the old voices. At first, I thought the voices were people around me. Then I realized that they didn’t even do what they said they were going to do. So now, I hear them, I talk to them, but I don’t believe they’re going to do anything. While I’m talking to you, I can ignore them. The medication has never made them go away, but it makes it easier for me to deal with them. There’s some I like to talk to and some that I can’t stand. Even though I hate the whole thing, there are some voices I would definitely miss if they went away.”
George moved in some years ago with Giuseppe, who has focused his life almost entirely around his youngest son. “I wouldn’t date because I can’t afford other distractions,” Giuseppe said. “I have to do what I have to do for George.” George’s older brother has indicated that he will take care of George when Giuseppe is gone. George, thirty-five when we met, was on clozapine and had regular blood tests. “I’m better than I used to be,” he said. “I still get a little paranoid when I’m in public, but I can function. My parents have been very vigilant on my medicines, and they pay good attention to my behavior. I don’t do too much. I basically talk to the voices all day long. If Dad’s home and I’m going to talk to them, I go in another room. I don’t like it when people see me talking to myself, even my father.” Giuseppe has found ways to deal with the voices. He said, “George is laughing with them and I say, ‘George, cut me in, let me know what everyone’s saying,’ and we joke a bit about it.” Bridget said, “It doesn’t seem like a very high-level conversation. Like guys standing on a street corner. It upsets me to hear it, but I take a deep breath and I never tell him to stop.”
George sees Dr. Nathan every week, and Giuseppe usually goes along and sits through the session. George likes the arrangement, which saves him the trouble of explaining everything twice, to his father and to his doctor. “There’s not much I can do other than take the meds, see the doctor,” George said. “Just hope that the bad events keep to a minimum. My situation is obviously stressful for both of my parents, and I know it’s not my fault, but I feel bad about it.”
Giuseppe said, “I don’t care what it’s done to me. But I sit in my room and cry because of what he’s missing. What life ought to be about, could be about, and isn’t about for him.” Bridget said, “He’s such a wonderful person—decent, kind, gentle. He deserves so much better. At the beginning, I thought, ‘He’ll never have a normal life.’ You just think, ‘What is a normal life? Who has a normal life? What are any of us doing here?’ I am so proud of my three sons for what they’ve accomplished. My oldest son, he’s so talented and determined. My youngest son, he’s so good at what he does. But George is so decent. Look at all he does with this going on in his head. I might be proudest of him.”
• • •
Emerging with the early-intervention movement is the recovery movement, which proposes biological treatment to address positive symptoms, and psychosocial methods to ameliorate negative and cognitive symptoms. The focus is on improving the quality of life even for those whose clinical condition is poor, emphasizing that impaired people still have capacities that should be maximized. Case management makes certain that even patients who suffer continued psychotic symptoms, erosion of cognitive ability, and social limitations have somebody to handle their health insurance, take them to doctors’ appointments, ensure that they have a place to live. Patients are helped in finding a workplace where their deficits are tolerated and supported; some are given rehabilitation training to develop job skills. Social skills training teaches them how to interact with others in more acceptable ways. Patients do computer-based brain exercises that enhance memory, decision-making, and attention. Any way that people can be knitted into the social fabric is precious. One mother whose son had recently been diagnosed described pulling into a gas station and looking at the teenager working the pump. “Two years ago, I would have thought he was living a sad, wasted, pointless life,” she said. “Now I thought, ‘Oh, if only my son could be like him.’”
• • •
Marnie Callahan’s sister Nora has long been in constant conversation with Eric Clapton. Nora lived with Marnie for some time, but then one day Marnie came out of her room, eight months pregnant, and found Nora, then twenty-four, standing at the door with scissors in her hands. “I said, ‘What are you doing here?’” Marnie recalled. “She said, ‘I have no idea why I’m here. Who are you?’ I picked up the phone, seven o’clock in the morning, and I said, ‘Mom, Dad, I’m bringing her home right now.’” In the years that followed, Nora lived with her mother and went on and off her medications until they were no longer fully effective. “Finally my mother had a stroke,” Marnie said. “I can’t say Nora caused the stroke, because my mother had borderline high blood pressure, but it didn’t help. Nora pushed my mother down and broke her shoulder. So I went to the State of Maine and applied for guardianship. I talk to Nora or do some Nora-related thing at least four or five times a day.” At fifty-three, Nora is now in assisted housing, but keeps her sister abreast of her exchanges with Eric Clapton. Yet much of who Nora was survives within this troubled and troubling self. “She sees people so clearly,” Marnie said. “It’s almost as if in our social order we’ve learned to mask and hide. Schizophrenics cut right through that. For all of her contentiousness and discordant behavior, she’s just trying to get by, like all of us. I can’t abandon her. I’ll visit her in her simple little apartment, and even with all this pain, she still has that fight in her. She still tries to have dignity in every day. A little flower arrangement over here, something pretty there. That little touch of something creative. It doesn’t die.”
• • •
Jeffrey Lieberman, at Columbia University, evinced considerable frustration around how little use is made of the tools we have. “The problem is that people become mental patients in their chronic wasteland, stuck away someplace in their rooms, smoking cigarettes, doing nothing, going to see a doctor for a prescription once a month,” he said. “We now have medical and social means to help people. But because of limitations in resources, lack of awareness, and stigma, most people aren’t helped.” Only a small percentage of people with schizophrenia are refractory—unresponsive to medical treatment—and need permanent hospitalization, he explained. The rest could be managed with acute-care hospitals and adequate community services. “We have people in the hospital whose families don’t want or can’t take them back, and they can’t live independently, and we can’t find them a supervised residence. You discharge them to a homeless shelter.” In the United States, 150,000 people with schizophrenia are homeless; one in five people with schizophrenia is homeless in any given year. Such people are soon off their meds and back at the hospital for acute care. This serves neither their medical advantage nor the state’s economic interest.
The 2008 National Survey on Drug Use and Health reports that cost is the primary barrier to care for serious mental illness. Less than half of schizophrenics in the United States receive outpatient services; a little more than half receive prescription medication; and half of those who go untreated blame cost and insurance issues. When I asked Jeanne Frazier whether it had been emotionally draining to work with schizophrenic patients, she said, “The thing that makes me emotionally drained is managed care. When I have to fill out yet one more form just to increase the dose of an antipsychotic that’s already approved, it really impacts the quality of service I can provide.” Treating schizophrenia in the United States costs more than $80 billion a year, expenses that could be controlled with programs of active outreach to patients—most of whom, with supports to stay in appropriate treatment, could avoid both descents into raving hell and the ensuing expensive hospitalizations and incarcerations, largely underwritten by taxpayers. As things work now, it fa
lls to families to organize support groups, construct community centers, create websites, and write memoirs full of advice.
A family member can commit a schizophrenic to institutional care only if he poses an “acute” danger to himself or someone else, and the burden of proof is difficult even though at least one in five schizophrenics will attempt suicide. A schizophrenic man jailed for a misdemeanor after quitting his medication was seen eating feces from the toilet bowl in his cell. On grounds that a person would not die from eating human waste, and that the man was therefore not a danger to himself, the judge refused to commit him. Kenneth Duckworth, a former medical director for the Massachusetts Department of Mental Health, said, “It’s harder to get into a state hospital than into Harvard Medical School.” Families are routinely obliged to lie about their relatives’ symptoms to obtain services.
Half to two-thirds of people with schizophrenia live with their families or have parents as primary caretakers, but according to a recent survey, only about 3 percent of those families deem it an appropriate arrangement. “The problem is that people burn out, especially because a family member with schizophrenia may not appear to appreciate the enormous amount you do for them,” Lieberman explained. The family must be a treatment center, an outpatient unit, a constellation of eyes to watch over, a series of hands to cook or clean or soothe or restrain—in short, an interlocking and yet ceaselessly shifting system of organizations for the patient’s discipline or haven. Family members frequently give up or compromise careers to do this work, resulting in economic hardship, and they face the stress of what people in the field call “unrelenting contact” with an ailing relative. Ezra Susser, an epidemiologist in the School of Public Health at Columbia who has worked with indigent schizophrenics, said, “You have to be really careful not to set up a situation where the family feels that they are being compelled, morally, to do more than they really can do.” While family involvement improves the lives of schizophrenics, it does not transform them into who they might have been without the illness, and a family’s costs in such attentions must be weighed against the benefits that can be achieved.
Far From the Tree Page 47
