Group stirs debate over schizophrenia

By Ellen Barry, Boston Globe Staff, 3/3/2002

LAWRENCE - From the exposed-brick office where he hands out his business cards, Daniel Fisher can describe how reality dissolved around him and how it swam back into focus.

Fisher represents a category of people that psychiatrists long believed did not exist - those who are diagnosed with schizophrenia and then, for some reason, completely recover. At an adjoining desk sits codirector Laurie Ahern, who was certain for years that she was Alice in Wonderland. Another desk belongs to Judi Chamberlin, who used to scream when she spoke because no one could hear her in outer space.

At their Lawrence nonprofit, the National Empowerment Center, they have been spreading a controversial gospel, telling mentally ill people and their families that the psychiatric establishment is lying to them about their condition.

The notion that some schizophrenics do recover, and can live out their lives without medication, is increasingly accepted. That inspiring story drew millions of Americans to the recent film ''A Beautiful Mind,'' in which the mathematician John Nash emerges slowly from a fog of delusion.

But psychiatrists complain that Fisher has planted dangerous hopes by telling people that their suffering is emotional and temporary. And so this small group has found itself at the center of a debate coursing through the national mental health community.

The conservative scholar Sally Satel singled out the center for criticism in her book excoriating liberal politics in mental health care. Last month, Fisher and Ahern were informed that President Bush's proposed 2003 budget would terminate the National Empowerment Center's annual $400,000 in funding, which makes up 80 percent of its budget, possibly jeopardizing the organization's future.

''There clearly is a struggle going on between the two ideologies,'' Fisher said. ''The system wants to use it as a rehabilitation model, using the analogy of a person with spinal cord injury - they can learn to function in spite of their illness. We feel from our own experience that it's possible to completely recover. It's not a permanent defect.''

For decades, people diagnosed with schizophrenia have been told they will most likely be sick for the rest of their lives. The American Psychiatric Association describes it as ''one of the most debilitating and baffling mental illnesses known,'' and recommends long-term use of antipsychotic medications.

Fisher and his group of ''consumer-survivors'' offer themselves as living contradictions to the medical orthodoxy: balanced high achievers who are reintegrated into society.

Fisher was 25, balancing a buttoned-down job as a researcher at the National Institute of Health with an after-hours immersion in Washington, D.C.'s late-'60s counterculture. It was around that time he noticed the scientists peering in the window, scribbling notes about his bad behavior. He detected terrible rents in the force of gravity. He picked up Einstein's autobiography and concluded he had written it.

In a psychiatric ward at Johns Hopkins University, he was diagnosed with schizophrenia, which most psychiatrists believe is caused by oversensitivity to a brain chemical called dopamine. But more than 30 years later, Fisher argues that what overtook him was an emotional cataclysm, not a chemical one.

''I had to let go of who I had been,'' he said. ''I really hadn't valued human relations. I really believed that the answers were to be found in microscopes and test tubes. I had to leave the day-to-day drone of NIH to my other life - I did inhale, I was part of the antiwar movement, and I was in a modern dance troupe - then I was back at work at the bench.''

He was prescribed Thorazine during his first two-week hospitalization, and Haldol for a year after his second, in 1970. Although he was hospitalized for two weeks in 1974, his last delusional episode was in 1979.

According to Fisher, it was resolving the conflict in his personal life - and not the medication - that made the difference. He looks back at certain moments that set him on a path to recovery: one day when a psychiatrist knelt down and got his own suit wet coaxing Fisher out of the shower; one day when he ''blacked out'' in solitary confinement and woke up with a grim resolve to maneuver his way out of the hospital. 

Since then, he has married, received a medical degree, and become a practicing psychiatrist. That story is the lifeblood of the National Empowerment Center, whose staff of seven former patients tell their narratives repeatedly, speaking at 50 conferences a year and answering questions on a hotline. They reject the term ''mental illness,'' describing psychotic episodes as ''anguish'' or `distress.''

Last week, Ahern spoke to the parents of two young men just diagnosed with schizophrenia, and, as always, heard the joy in their voices when she said their children could get better.

''They said, `You had schizophrenia? You and Dr. Fisher? And you recovered? I mean, you're not on medication? I mean, you're not just in remission?''' she said. ''That alone is very helpful. Then I try to reframe these problems as not being medical.''

Gradually, the phenomenon of recovery was also being aired in mainstream medicine. Courtenay Harding, then a researcher at the Yale School of Medicine, observed 269 chronically ill schizophrenic patients from Vermont State Hospital for an average of 32 years. In 1987, she reported that 45 percent had no psychiatric symptoms after three decades, and 23 percent had symptoms of less serious mental illnesses, but not schizophrenia. Many more patients would recover if our mental health system allowed for that possibility, she said.

''There are many, many models of recovery, and Dan has one of them. There is a small number of people that we just don't understand, who can go through schizophrenia and come out the other end without medication,'' she said.

But psychiatrists interviewed took issue with Fisher's argument that there is no such thing as chronic mental illness. Several complained that Fisher has used his own inspiring story to exaggerate the hope for patients and their families.

''I think Daniel represents the roughly 25 percent of people who get one or two episodes of what is diagnosed as schizophrenia and who recover no matter what you do,'' said E. Fuller Torrey, a Washington, D.C., research psychiatrist who specializes in schizophrenia. ''You can treat 'em with psychoanalysis or jelly beans, or whatever.''

Fisher's kind of recovery, he said, is possible only for a limited number of people - who may even suffer from a distinct disease, such as viral encephalitis. But most Americans with schizophrenia need to invest their hopes in medication, and risk homelessness and other dangers if they go off it, he said.

''I think Daniel Fisher has done damage,'' Torrey said. ''I think the center has done damage by implying - by saying quite explicitly - that medications are not necessary, that if you just provide community support and housing that everyone can live like Daniel Fisher. I think it's false.''

The National Empowerment Center's ideas have sparked a lively debate on Internet sites like MindFreedom (''defending the human rights of people in the psychiatric system'') and at the National Alliance for the Mentally Ill, where patients and former patients variously celebrate or scoff at the idea that taking medication should be a matter of choice.

''As having been hospitalized seven times, two times involuntarily because of schizophrenia, I say without meds I would be in jail or worse!'' wrote one irate man.

Satel, a psychiatrist and fellow at the American Enterprise Institute, singled out Fisher's organization as an example of patients' rights run amok in her 2000 book ''PC, M.D.: How Political Correctness is Corrupting Medicine.'' When she first encountered Fisher at a hearing, Satel said she was ''stunned that they would be getting federal funding.''

''These are people who really don't represent the severely mentally ill,'' she said.

Fisher says it's the same criticism he's heard since he began.

''The idea of hope,'' he said, ''I know they think it's cruel.''

Source: Boston Globe    

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