Leading a rich life despite schizophrenia

URAKAWA, Hokkaido (Kyodo) People diagnosed as schizophrenic have become their "own experts" at Bethel Home, a facility for psychiatric patients that is also a business run by the patients themselves.

Mieko Kibayashi, who suffers from schizophrenia, performs a song to showcase her vocal skills in front of fellow residents at Bethel Home in Urakawa, Hokkaido, during a meeting where members exchange information about their conditions and experiences. KYODO PHOTO

The facility in thoroughbred-horse country near Cape Erimo in Urakawa, Hokkaido, is named after Bethel, a name meaning "House of God" that appears in the Old Testament.

The business generates annual sales of about 100 million yen by selling local products by mail order.

"We are our own mental health experts," said Rika Shimizu, 37, on behalf of other members of the home as they introduced themselves at a recent lecture in Yokohama.

With the large audience listening intently, the Bethel Home members narrated their symptoms and how they have coped. On almost a weekly basis, Bethel members head out from Urakawa for such gatherings and symposiums throughout the nation.

The facility for schizophrenics, who typically suffer from auditory or visual hallucinations, was launched in 1978 at the initiative of Ikuyoshi Mukaiyachi, a 51-year-old social worker who had been sponsoring consulting meetings with people discharged from psychiatric care at Urakawa Red Cross Hospital.

Bethel Home's members still see doctors at the hospital on an outpatient basis.

Shimizu, working at a supermarket in Tochigi Prefecture after graduating from a university, was bullied by her fellow employees and lapsed into a type of sensory integration disorder in which patients feel that others know what they are thinking -- as if their thoughts were being broadcast.

Shimizu was concerned that she "had a talent for ESP" because at the time she knew nothing of her affliction. She joined Bethel Home after living seven years as a recluse in her home.

Members share their pain and distress at a daily discussion meeting, leading to the home's fundamental principles of "rather holding meetings than eating" and "making our weakness into our bonds."

Bethel Home allowed Shimizu, who had sought to keep her troubles inside by shutting herself off from society, to ease her burden through sharing experiences with others. She was surprised at how much she wanted to open up about.

Japanese have traditionally been reluctant to talk about mental patients' symptoms. "Bethel Home has covertly changed and transgressed such taboos," Mukaiyachi said.

"In Urakawa, we tell them, 'You have had precious experiences,' and that their feelings are shared by all the members. Doing so makes them feel that their fellow members need them and that they are not alone. We have been stubbornly honest about repeating this very simple method."

Nozomi Chidaka, a 27-year-old member who has diagnosed herself as having a "dramatic-type" split personality, developed a deep romantic attraction to former Prime Minister Junichiro Koizumi, saying she could hear "his voice" echoing in her ears. She eventually developed the belief that a part of her, split from her body, went to meet him at the Prime Minister's Official Residence.

Chidaka won the grand prize last year at the home's annual "Delusion & Fantasy" competition for honoring members who had outstanding encounters of what they call "gencho-san" by personalizing the symptoms of auditory hallucinations.

Since joining Bethel Home, Shimizu has come to believe that suffering from such hallucinations need not be debilitating. "The name of the game is how to lead a rich life" while hearing them, she said.

Bethel Home puts a great deal of effort into case studies, with members conducting research into each other's conditions.

Masako Yoshino, 25, who suffers from the same symptoms as Shimizu, said her research has made her realize that patients with these symptoms want someone to notice their hardships and they want to keep their ties with others.

Yoshino, who developed her malady in her second year of high school and had difficulty communicating with her family and neighbors, came to Bethel Home at age 21. "I was able to get 'reincarnated' by talking about my disease. I hope I can help people with the same problems feel relieved, even a little bit," she said.

Some 2,500 patients, their family members and researchers visit Bethel Home each year like pilgrims to a holy place. Yoshino said, however, there is nothing sacred about the Urakawa home. "Anywhere that you can tell others about your weakness, there will be 'Bethels' there."

Influenced by movements in Europe and the United States in the 1970s seeking to have mental patients live together in communities rather than being housed in institutions, similar "social rehabilitation and group treatment" facilities are on the rise in Japan.

The 150-member Urakawa home, operating vocational aid centers and group facilities, has taken center stage both domestically and overseas. The 5,000-member National Federation of Families of the Mentally Ill in Japan held a national meeting in Urakawa last fall with some 700 participants listening to reports from Bethel Home members.

"Bethel Home members, grappling with many hardships, successfully fit into communities. We hope to learn from the dynamic way they approach their activities," said Mitsuo Yamaguchi, chairman of the nonprofit body.

Karen Nakamura, an assistant professor of anthropology and East Asian studies at Yale University in the U.S., said, "Strongly community-oriented, Bethel members go out bravely, without taking their diseases negatively.

"I'd like to introduce a 'Bethel' style' " in the United States, where there are no such facilities, said the 36-year-old researcher, who has paid three visits to the home and produced a documentary film about it.