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I'm Still Here: A Journey of Discovery and Understanding
by Leslie Knowlton
1996

It was an emotional rollercoaster of laughter and tears at the preview of a new non-fiction film about schizophrenia in the Florence Gould Hall at the French Institute/Alliance Francaise in New York City. The intense and brilliant film, entitled I'm Still Here: The Truth About Schizophrenia, capped the National Alliance for Research On Schizophrenia and Depression's (NARSAD) Eighth Annual Scientific Symposium and 10th anniversary celebration. A joint project of NARSAD and the Wheeler Communications Group Inc., it was directed by Robert Bilheimer, a 1989 Academy Award nominee for the South Africa documentary, The Cry of Reason.

To make the film, Bilheimer traveled around the country together with the project's director of photography, Richard D. Young, a former Eastman Kodak filmmaker, to document people with schizophrenia along with their families and caregivers. Medical researchers were also included.

Bilheimer said making the film was a journey of discovery and understanding. "In the beginning, it appeared that schizophrenia was about suffering, stigma and loss. And there's no doubt that those words describe emotions and realities that millions of Americans who are connected with this illness in one way or another experience every day. But as work on the film progressed, it also became clear that schizophrenics, despite the radical alterations inflicted on their personalities and perceptions by a chemical imbalance in the brain, often retain a dignity, courage and sense of self that is truly inspiring." Bilheimer said he hopes his film will demonstrate that people suffering from schizophrenia do not deserve society's historically scandalous and discriminatory treatment.

"[The film] seeks to strip away the ignorance and fear that surround our perception of schizophrenia and remind the public at large that those living with the illness have not gone away and are not lost," he said. "They are, in, fact, still here. Many lead lives of extraordinary courage and accomplishment and as such deserve not only our compassion, but our admiration. In this sense, I'm Still Here is not only about individuals and families coping with a serious and frightening brain disorder, it is about ourselves."

Medical consultants for the project were Nancy C. Andreasen, M.D., Ph.D., Andrew H. Woods Professor of Psychiatry at the University of Iowa College of Medicine, and Stephen M. Goldfinger, M.D. , an assistant professor at Harvard Medical School, where he teaches social and community psychiatry.

Speaking by telephone after seeing the finished film, Goldfinger, who also chairs the American Psychiatric Association's committee on poverty and homelessness, said his career has revolved around working with the homeless, including 12 years spent working with street people in San Francisco. After previously working on educational videos on schizophrenia, he met Bilheimer for dinner, and they "clicked."

"I spent a couple days with him just talking about concepts," he recalled. "There were already lots of educational videos, so the concept here was to do it through the eyes of the individual, to let people talk for themselves."

In the 64-minute presentation, viewers meet Dan, a Midwest man in his 50s with a Ph.D. in algebraic calculus, who has been living with the illness for 32 years. Then there's James, a musician who after diagnosis and treatment has resumed his career playing the organ and leading the choirs at a Philadelphia church, where his father is senior pastor. Other interviewees with schizophrenia include a young female artist and animal lover who volunteers at a California zoo and a man who-after the film was shot-committed suicide.

Powerfully opening the film is Fred Frese, Ph.D., who after being involuntarily committed for paranoid schizophrenia in 1968, went on to become Director of Psychology at Western Reserve Hospital (now called North Coast Behavioral Health Care System), Ohio's largest psychiatric facility . Now retired from that position, he works as coordinator for the Summit County Recovery Project, where he oversees mental health services. He is also a clinical assistant professor in the department of psychiatry at Case Western University.

Speaking by telephone from his office, Frese, who was a patient in 10 different hospitals over a 10-year period, ("they declared me on a certificate as an insane person," he said) recalled that he got involved in the film while attending a National Alliance for the Mentally Ill (NAMI) conference. Asked by a NAMI staff member to attend a filming, he went on camera for an hour.

"Of course I can't be objective about the project, but I think it's outstanding," he said. "It does such a good job of giving the full spectrum of disability and does so with tremendous dignity."

Frese, who was recently profiled in the Detroit Free Press, said he still has breakdowns, but has learned how to take care of himself without having to go to a hospital.

"I still live with my brain beginning to crack into irrationality," he said. "But like anything else, you learn to pick up signals so it doesn't get out of hand."

Other particularly compelling footage was shot in New York City's Central Park, where Margarita Lopez, B.A., senior team leader at Project Reach Out, goes twice a day to talk to and attempt to help homeless people who suffer from schizophrenia and other mental illnesses.

"The film is very intense," she said after viewing it. "It presents the reality of the illness like a punch in the face. The punch comes from the voices of those who suffer from it."

Commenting about her participation in the film, Lopez said she's been working with mentally ill homeless populations since 1983 and took the position at Project Reach Out on Manhattan's Upper West Side in 1985. Since then, she has convinced hundreds of homeless people suffering from mental illness to accept help from her organization, which is funded by federal, state, city and private funds.

"The program works," she said. "I don't feel an inch of burnout because the program is full of hope. Yes, the tunnel [of mental illness] is dark, but we can turn up the light."

Lopez, brought into the film project by Goldfinger, said she has no doubt the movie will make a strong impact on the public.

"It lets you know that people with this illness are like the phoenix," she said. "The illness may turn them into ashes for the moment, but if they try, they come back like that magnificent bird. People can and do rehabilitate." After the New York premiere, the film was shown at the APA's 1996 Institute on Psychiatric Services Meeting in Chicago, and again for a week at a commercial theater in Los Angeles. A television special is planned.

To see clips from the film and read more about it, see Wheeler Communications Group's World Wide Web site http://www.wheelercom.com

To learn more about schizophrenia and research being done to find a cure, visit these Web sites: