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Whoever has explored New York City has probably passed West 106th Street in Manhattan. Lined with stately brick apartment buildings from the nineteen-twenties, it begins at Riverside Drive and ends at Central Park. East of Broadway, the street was a bit seedy when we moved to 315 West 106th in 1963, but the block from Riverside to West End was elegant and reasonably safe. Many children lived in the building, and parents took turns babysitting. Our two-year-old son was welcomed by everyone. One of our friends used to say that if anything happened to us, she would adopt Serguéï.
Our son attended the United Nations School. In December, 1970, at nine years of age he was chosen out of the student body to appear on “The World of Love,” a TV Christmas special for UNICEF. We have photos of him walking down the aisle of the General Assembly carrying the train of Shirley MacLaine and ad-libbing on stage with Bill Cosby. He was a wonderful child. How could anything go wrong?
The change began during Serguéï’s freshman year in high school. It didn’t seem serious then. Everyone knows adolescence is a tumultuous period. His best friend since kindergarten changed schools, and we thought he was reacting to the loss. Labeled emotionally abusive parents by our son’s first psychiatrist, we were given the guilt trip. A family history with four generations of schizophrenia was inconsequential. Our son distanced himself from parents and former friends, and was expelled from school. He hung out with a group of delinquent kids in the neighborhood, skateboarding and smoking pot.
SCHIZOPHRENIA! The diagnosis was finalized at Bellevue when Serguéï was twenty. It wasn’t an adolescent revolt; we weren’t guilty parents; it was much worse. It was a brain disorder. Our son was mentally ill. Even with the advances in knowledge of the brain and genome and the technology for research, the illness is not understood. Medications given to schizophrenics do not “cure” the illness. They treat symptoms, not causes.
Our son has been treated with so many medications that I lost count. He was “medication resistant.” In 1986 he remained at Bellevue for seven months while he tried seven different medications. They let him stay as a favor to me. I worked there. If he did not benefit from the seventh medication, he would be sent to a state hospital, Rockland, not Manhattan State. Another favor. Manhattan State was considered the garbage dump of Manhattan. It didn’t matter. Any state hospital was the end—a life spent scuffling around the grounds in ratty slippers and droopy pajamas, conversing with voices. Medication number seven, Prolixin, helped somewhat, and he was discharged to a residence in Brooklyn.
During his ten years in Brooklyn at the Stepping Stone Residence, Serguéï continued to have loud, unintelligible conversations with voices and laughing fits at jokes only he could hear. Occasionally he went off medication, probably because it didn’t help. Why suffer the unpleasantness of side-effects if there is nothing to be gained? Without medication he decompensated to the point of becoming a danger to himself, but the people in charge refused to call the police. According to them, the police wouldn’t pick him up since he was relatively quiet and not a danger to others. It’s not illegal to pace back and forth talking to your voices, to lock yourself in your room, and not to eat. Without help from the residence, my husband and I had the disheartening task of petitioning the judge of the Mental Hygiene Court of Brooklyn to have our son hospitalized. It was like asking for a warrant for arrest. We had to accompany two policemen to identify him. Nothing was more painful than the clink of the handcuffs as he obediently thrust his hands out behind his back.
After ten years, Serguéï moved to a residence in Manhattan run by The Bridge, where he was closely supervised. Obliged to attend the program, he participated in art and discussion groups with little enthusiasm. The art therapist said he was talented but could never finish a picture. His psychiatrist switched him to Olanzapine, which was no more effective than the older neuroleptics. He complained about side-effects and stopped taking it. Still medication resistant, he was a candidate for Clozapine, an atypical medication considered the most effective treatment for people like him. Patients on Clozapine require close monitoring with frequent blood tests. Many of our son’s psychotic symptoms were somatic. He feared having anyone touch his body. Professional teeth cleaning, minor outpatient surgery, the loss of a drop of precious blood, all were anathemas. He had “patients’ rights” to refuse blood tests. Clozapine was therefore out of the question.
My husband and I took our son to see one of the leading psychiatrists in New York with whom Serguéï freely discussed his problems, including voices and people coming out of the T.V. The doctor said, “Look, you’ve been on every other medication, and nothing has helped. It’s time to try Clozapine.” Much to our surprise, he agreed and enrolled in the Clozapine Clinic at Mt. Sinai. Initially we drove him to the hospital for the blood tests and waited in the car, afraid he wouldn’t get there. At the end of the month he told us it wasn’t necessary. He could go by himself.
Like Rip van Winkle, our son woke up after a deep sleep and came back to 315. The building hadn’t changed except for the renovation of the lobby and addition of twenty-four-hour-a-day doormen after it became coop. His friends had left long ago. No one knew him. He was a stranger to everyone but his parents, who were twenty-five years older. The doorman called us to authorize his entering the building.
Rip found his way back home by himself; our son returned with the help of Clozapine. Rip was an adult; our son had regressed. He seemed like a boy of thirteen, the age when he first became symptomatic. Unaware that time had passed during his sleep, he picked up his life where he left off. Except for a receding hairline, no one would have guessed he was forty. He was related, motivated, and as likeable as he was as a child. He rarely talked about his problems. Only once at the home of a psychiatrist friend did he describe the way the voices tortured him. Clozapine is a wonder drug. Our son is no longer “medication resistant,” but he is still as dependent as a child and asks permission for everything. Having no insight about his illness, he thinks he leads a normal life. He explains that he lives in a residence, attends a program, and collects SSI to people he meets in the elevator. Dr. Meltzer has labeled this “The Rip van Winkle Syndrome.”
For the last four years Serguéï has progressed technically and creatively in art. He will not stop before finishing a picture. He has been showing his work, mostly collages, in the Bridge program’s annual art show and everything sells. He was featured in the article “Battling Mental Illness with a Paintbrush” by Jennifer Gonnerman in the Village Voice of January 4, 2006. Our son had two works in a show of the art group of the Bridge at the Museum for Modern Art which opened on July 13th, 2006. We are delighted to have recovered our son, but mystified by his long absence. Was he a prisoner of psychotic demons? Will he remain in this intangible state of childhood forever?