Mental Illness on Martha’s Vineyard: On the run with schizophrenia

"River Through the Trees", woodcut by Ruth Kirchmeier. —Ruth Kirchmeier

In his book, “People and Predicaments,” Dr. Milton Mazer described the study he conducted on Martha’s Vineyard beginning in 1961, which showed that incidences of mental illnesses were much higher on the Island than on the mainland.

Mental illness affects one in four families, according to the National Alliance for Mental Illness (NAMI). On Martha’s Vineyard, that number is much higher.

What is mental illness? What causes it, and why is there such a high rate of it on Martha’s Vineyard? How is it diagnosed, and who is afflicted? And why is it so hard for people to talk about?

Martha’s Vineyard Times contributor Jonathan Burke, who lives with mental illness himself, will be writing about Islanders who have suffered from depression, schizophrenia, bipolar disorder, anxiety disorder, and eating disorder. His first essay, “Losing one’s life to food,” examined eating disorders, and appeared in our March 23 edition.

We’ll be exploring why the Vineyard mental illness rates are so much higher, how police and public health officials treat psychological issues, and how mental illness on Martha’s Vineyard has changed since Dr. Mazer began to study it.

And each month, Martha’s Vineyard Hospital psychiatrist Dr. Charles Silberstein will write a column addressing questions about mental health.

On the run with schizophrenia

James (not his real name) crisscrossed the country and parts of the world for five years, pursued by the demons of schizophrenia. The illness first showed at the age of 18.

He thought people were talking about him and did not like him. Mostly, he lost his motivation. “I began being not able to carry out planned activities,” he said.

He was in college. He stayed in his room all day and slept. He was the No. 1 cross-country runner, and he stopped running. He stopped playing music, which was a love of his.

He did not realize he had an illness.

Maybe, he thought, this was a normal experience shared by everyone, or was the result of smoking marijuana. For the next few years, the illness was sporadic. He would be well a few months and then withdraw from all activity again. He tended to be happy in the summer and depressed in the winter.

His first real psychotic episode was at age 19.

It was a winter night, there was snow on the ground, and the moon was out. He went out for a walk, and all of sudden was overtaken with fear. He ran home through the snow, hopped in his car and drove through the night to Burlington. In the morning, he was OK, and returned home.

The illness hit James like a barreling train when he was 20.

James was in Berlin, Germany, eating supper with friends in the cafeteria of the youth hostel in which he was staying. He heard voices. It was mostly a female voice. The voice said someone was trying to kill him. He was terrified.

“Why is someone trying to kill me?” he asked himself.

He built an answer to his question: “I was hearing the voice of a woman and I was in Berlin, Germany, and immediately I thought I was a CIA agent and that I had been trained … my whole life.”

Just recently, he had driven across the border into Germany with three passports. (His parents have dual nationalities.) The border agents questioned him about his multiple passports. It made sense now, as he thought about it. He had three passports because he was CIA. The passports were his aliases.

“I just rationalized I was some kind of agent. The voice in my head was [from] a microchip installed in my ear so I could communicate with my partner,” he said.

He reasoned further. The voices were saying someone was trying to kill him because someone was, in fact, trying to kill him. The night before, he had been in a fight. He had been drinking, and did not remember much. Possibly a gang of Moroccan drug dealers had attacked him. Possibly he had killed someone in the scuffle.

“This criminal organization was out to get me,” he surmised, “because I was working for the CIA, and I was like an assassin, and I had killed this person and now they’re trying to get me for it.”

For the next few months, James took what he describes as a “crazy ride” around Europe.

For about a month, he stayed in Berlin. He found a job making pizzas, and had a small apartment. He had a girlfriend. Green vans — probably surveillance vans of the organization — followed him around wherever he went. He took buses and trains around the city.

Hiding from ‘the organization’

One night, two men attacked him in a train station. They said they worked for the transport system and he had not paid for a train ticket. They started to beat him up. He swatted them with his sweater, and managed to run away and evade them. But he knew his cover was broken. The organization was onto him.

He packed a small bag, leaving the rest of his belongings in his apartment. He left his girlfriend and boarded a midnight train to Amsterdam. He stayed a while in Holland — hiding from the organization — and in Belgium, and then traveled to Italy.

He had family and an apartment in Bologna. But he remained paranoid. Lying in bed with the window open, he would hear the whole neighborhood talking about him. Someone, the organization, was going to kill him. He needed to leave Europe.

He called his parents — unsure now that they were indeed his parents. More likely, he thought, they were his CIA trainers and handlers. But he had nowhere else to turn. They bought him a plane ticket home.

He flew to Heathrow Airport, London, where upon debarking the plane, he was arrested. He said he looked “really off,” and was noticed by security. He was treated well, though, and placed in a mental hospital. His mother came to London. She did not know that he had a mental illness, or even what mental illness was. She brought him home.

He could not handle being home. He believed his childhood friends were plotting to kill him. He went to Florida and lived with a brother. For the most part, he was OK. After about a year, he had the urge to move. He went to the Northwest to live with another brother.

In the Northwest, after a while, he started to become paranoid. He was doing drugs and drinking. He and his brother had a falling-out. They were going to sail a boat together to the Caribbean. James was afraid he would die at sea. He jumped off the boat as they were leaving dock.

James found himself homeless.

He wandered around and slept in town parks. The voice returned. “I started to have a relationship with that voice, and I started to get to know the voice more,” he said.

He moved near an aunt who lived in the Northwest, and found an apartment. He worked in a small burrito shop. He was, he said, drunk all the time. Everyone knew him. He was addicted to alcohol. It made him feel good, and quelled his fears and the voices. He smoked pot as well, as it calmed his anxiety. And then after taking LSD, he had a terrible psychotic episode.

He was sure someone was going to kill him. “I was so frightened and scared,” he said. He went to his aunt’s, where he felt safe. His aunt saw something was wrong and called his mother. His mother flew out.

James and his mother moved to Seattle.

In Seattle, James found a girlfriend.

One day, James was very symptomatic — hearing voices and feeling as though people were after him — and he had been drinking. He was visiting his girlfriend and was acting loudly. His girlfriend called the police.

He was in the yard and had quieted down when the police arrived. He was on his way home. His girlfriend told the police everything was now OK.

The police beat him up. They grabbed him and held him down. They cuffed him and laid him face-down on the ground. With a knee in his back, they pushed his face down in the ground. They punched and kicked him, hurting his shoulder. They then took the cuffs off and left him there, without arresting him.

James and his mother lived a few months together in Seattle, and then they flew home.

Into rehab

James jumped the plane in Miami during a layover. He did not want to go home because he knew his childhood friends would try to kill him.

He went to Fort Lauderdale. After a night of drinking, he fell asleep on someone’s lawn. He was picked up by the police in the morning, and put in jail for a few days. Later, after another nightlong bout of drinking at a Hard Rock Cafe, he realized he had a problem. He found a drug and alcohol rehab counselor who helped him find a rehab facility. He was in rehab for 28 days.

Then James was again homeless, and was hit by another psychotic episode. Someone was after him. Probably, he thought, it was a gang of meth dealers who had tried to sell him drugs. He had refused to buy, and they were angry.

Together, he and a girl he had met left Fort Lauderdale and hitchhiked up the coast.

In North Carolina, he was arrested. He and his girlfriend were arguing loudly outside a convenience store, and the police were called. James did not have any ID.

He said, “I told [the police officer], ‘I need to go to my hotel room to get my ID for you,’ and turned around to go walk, and the police officer said, ‘I’m going to arrest you; I didn’t tell you to go there.’ We had an altercation because I was resisting arrest pretty badly, and wrestling around and everything. Eventually, they had to taze me a few times. I went to jail.”

James pleaded guilty to resisting arrest. He spent two months in the local jail. His girlfriend waited for him. But the relationship soured when he was released.

Paranoid and feeling the need to run, James hopped a bus to New York. From New York, he travelled to Western Massachusetts, and then to an uncle in upstate New York. His parents came for a while as well.

His mother, by this time, knew James was sick. She had been reading books on schizophrenia and mental illness. She had him admitted to a nearby hospital. James convinced the doctor he was not sick, and was released. He went with his parents to New York City.

His parents soon headed home. James refused to go with them. But he knew homelessness in New York City could be a death sentence. He headed up to Maine, and then to Boston, and wound up in Vermont, homeless in the middle of the winter. It was −25° outside.

He recalls, “I was running around outside and stuff like that, and sleeping [next to] ATM machines. I got frostbite on my toe, and realized I was probably going to die in the cold.”

A friend in the area picked him up and bought him a plane ticket home. Back home, he had the worst paranoid episode of his life.

Full-blown insanity

The voice in his head was demonic. It was, he said, “full-blown insanity.” The voice pulsated. Every word rang out. “The voice was saying awful, scary things … ‘you’re going to die, someone’s going to kill you.’”

He did not sleep for a week straight. He sat upright in bed. He lived on coffee and cigarettes. He always had a weapon in his hand. He hallucinated. A centipede crawled across the porch and bit him on the foot. He heard a loud bang, and thought he was having a heart attack. “I felt a shock go from my foot all the way to my head, and it was so powerful that I fell backward.” He had nowhere to go.

There was a medieval type of mental hospital where he lived. Neither he nor his mother wanted him to end up there. They envisioned he would be shackled and tortured there.

His mother was at a loss. There was no help available to her. She bought him a plane ticket. At least, she thought, on the plane, however momentarily, he would be free. Maybe he would have a chance.

He returned to Vermont and then ended up in Boston.

James was homeless for a summer in Boston. He slept on doorsteps and behind buildings where he was visual so as not to be mugged, but not too visual. During the days, he walked around Newbury Street and hung out in the Guitar Center store near the Berklee School of Music.

He was arrested in Boston for being loud and disorderly. He was again beaten up by the police. According to James, the police cuffed him and then kneed and kicked him in the ribs. He said they broke a few of his ribs.

He was placed in jail and then in a hospital. A court-appointed lawyer contacted his mother. She came to Boston. She was determined to rescue her son. A social worker told her what she had already determined. James had a mental illness — schizophrenia.

Finding help on the Vineyard

James and his mother moved to Woods Hole, where she had a friend. Not long after, they moved to the Vineyard, where they found a cottage.

On the Vineyard, James’ mother heard of a course offered by the National Association for Mental Illness (NAMI) for family members and friends of people with mental illness.

The next time James found himself in trouble, his mother — armed with what she had learned from NAMI — was ready. She understood his illness. She knew how to talk to the courts and the social workers and doctors. She was able to have James placed in Taunton State Hospital.

The medications James was given in Taunton started to work right away, and really took effect after a few weeks. He had a social worker, a psychiatrist, and a counselor. These people, he said, made him want to get better. The counselor encouraged him. Slowly, he returned to reality, and gained some insight into his illness. He stayed in Taunton six months.

After five years on the run in Europe and in the United States, James was 25 and in recovery from his schizophrenia. He credits the Vineyard with giving him a second chance in life. He could have been prosecuted and placed in jail. With the help of an attorney, he was able to settle his legal case.

“I no longer have paranoia … my voices are gone. I do not have voices anymore. I’m not delusional anymore.” He explains that sometimes there are still some voices, but they are not as loud, and he can manage.

It has not been easy for James. He was very depressed in the beginning. He found a girlfriend, and she gave him “a reason to live.” He has had to find the right medication regimen. There are side effects. He needs to make sure he has enough rest, and does not do too much. The symptoms do rear up from time to time, and need to be managed. There is always a risk of falling into another serious episode.

James has been in recovery for five years, and is making progress. He is currently pursuing his associate’s degree.

What is Schizophrenia?

Schizophrenia is a severe mental illness that causes one to lose touch with reality. People with schizophrenia — like James in the accompanying story — often believe or feel things that are not real, such as his belief that a microchip was implanted in his head and that he was with the CIA.

Such symptoms, and other symptoms of schizophrenia, affect one’s ability to think clearly, to manage emotions, and to make decisions. Those with schizophrenia who do not receive help often can’t settle down or function in the community.

The hallmarks of schizophrenia, according to the National Institute of Mental Health and the National Alliance on Mental Illness (NAMI), are its positive, negative, and cognitive symptoms.

Positive symptoms consist of hallucinations and delusional thinking.

Hallucinations may be hearing voices or seeing, feeling, sensing, and even smelling things that are not present. For the person suffering, the hallucination is as real as it is unreal to a person without schizophrenia.

Delusions are also beliefs that are not real. People may suffer from paranoia — i.e., they are convinced of a conspiracy to kill them — or they may have feelings of grandiosity. They may think and act as if they are billionaires or famous actors when they are not.

Negative symptoms affect one’s emotions and behavior. People with negative symptoms may have emotional flatness. They may be unable to express their emotions through their voice or behavior. They may be unable to experience pleasure. Those with negative symptoms often lose interest in daily activities and withdraw socially.

Cognitive symptoms interfere with a person’s ability to think clearly and make decisions. People with cognitive symptoms may be unable to make a grocery list, or to arrange their desk. They may be unable to focus and concentrate. And they may have anosognosia — lack of insight. They may be unable to understand that they have an illness.

Schizophrenia, according to NAMI, affects about 1 percent of Americans. The average age of onset tends to be in the late teens to the early 20s for men, and the late 20s to early 30s for women. With help, says NAMI, it is possible to live well with schizophrenia.