After the Awakening, the Real Therapy Must Begin

By James Willwerth/Cleveland

In Washington Irving's classic folktale, Rip Van Winkle awakes from a 20-year nap to find his youth behind him, the world radically changed and his assumptions hopelessly outmoded. Schizophrenics roused to reality by clozapine endure much the same jolt. Re-entry is not merely a question of catching up with the arrival of rap music and the end of the cold war. It often means coming to terms with lost dreams: the chance to buy a house, build a career or perhaps start a family. On top of this, patients emerging from schizophrenia must acquire the skills needed to live independently while contending with the disorientation, neurological damage and emotional problems left behind by the disease. To manage all this takes more than a great drug; it demands months, even years, of painstaking therapy. "Clozapine gets their attention," says Sarah Burnett, supervisor of Case Western Reserve's Psychosocial Rehabilitation Clinic, "then counseling starts."

A counselor's first goal is to coax newly awakened patients out of the cocoon of their former life. "They are like children at first," says Burnett. "Everything frightens them." Once their trust is gained, they must learn the most fundamental, practical facts about how to organize their life. In a group session, for instance, participants are asked to make a pie chart of a typical day. How big a slice does sleep get? Work? Television? Many schizophrenics are accustomed to sleeping 16 hours a day. To enforce normal habits, Burnett often uses peer pressure. When new arrivals realize that other patients in the group have cut their sleep time to eight hours, she says, "a light goes on." The technique has also worked to convince an unkempt patient of the need for regular showers.

Patients at the rehabilitation center practice social skills by calling each other on the phone and organizing excursions to restaurants and shops. They help one another set daily goals: cook breakfast, buy Mom a birthday card, look for a job. They also learn to do mundane chores: washing clothes in the hospital laundry room and cooking in a tiny employee kitchen. Nothing is easy. Soap goes into the washing machines, but clothes are often forgotten. Because schizophrenics have certain cognitive problems, they have trouble generalizing the principles behind the chores. Thus learning to fry chicken doesn't mean they will know how to cook a hamburger. Technical skills can be mastered only by constant repetition. "I can't drive a car. I can't follow a map," complains a 40-year-old female patient. "I have no idea what a computer is. It's really embarrassing. Just about everybody with an I.Q. over 70 can do things I can't do." Another problem: parents who have suffered through decades of caretaking have trouble letting go. "That can really slow things down," says Burnett. She and her team conduct therapy sessions with the patients' families to help them adjust.

Recovering patients must also cope with clozapine's side effects, which include drooling, drowsiness and possible seizures. Most adjust. But the risk of agranulocytosis is terrifying. Everybody at the center remembers a model patient who did so well on clozapine that she moved into her own apartment, got a job, found a boyfriend and bought a car. Then she lost it all, lapsing into homelessness and insanity, after she developed the dreaded blood-cell deficiency and had to be taken off the drug. Burnett remembers the woman begging to return to clozapine, insisting she'd "rather be dead" than endure madness again. She was ultimately killed in a street robbery.

But for some, even the fear of agranulocytosis cannot compare with the hollow ache of lost possibilities. Kevin Buchberger, a former Little League star, had to jettison his dreams of playing pro baseball. One patient returned to a favorite fishing hole -- and found an apartment building. Women who have missed the chance to have children stare sadly at the enlarged girth of counselor Kathy Sinkiewicz, pregnant with her second child. Patients eventually have to confront and if necessary "mourn" these losses, says Sinkiewicz. Dancing at a belated high school prom was part of that process, but only the first of many intricate steps back toward life.