On the inside looking out

Bobby Fisher's journey out of Worcester State Hospital

By Martha Akstin

Bobby Fisher had his first psychotic episode 24 years ago when he was 19. But he remembers having worries when he was just a young boy, fears he never discussed with anyone. 

"I had my first sign of depression when I was seven or eight years old," Fisher recalls. "I'd wake up and feel like the weight of the world was on my shoulders." He says although one great-aunt was schizophrenic, to his knowledge there are no other family members who are psychologically afflicted.

His father was Lawrence Fisher, a well-known Worcester attorney in private practice. His mother, Doris Fisher, still lives in the city. He has an older brother, now a practicing psychiatrist in California, and an older sister who lives and works in Boston. The children were raised in an affluent neighborhood in Worcester and given all the privileges that accompany wealth.

But mental illness doesn't respect socio-economic barriers; it cuts a swath through the human race regardless of ethnicity, geographic boundaries, educational degrees or professional accomplishments. People who struggle with mental illness are found absolutely everywhere, living in mansions or hovels, highly educated or completely illiterate. It is estimated that 10 percent of the American population suffers from some type of mental or emotional difficulty that is serious enough to require professional care.

Is it inherited, a misfiring of neurons, a chemical or hormonal imbalance, undeveloped areas of the brain, or the result of physical or psychological trauma?

"You want to win a Nobel Prize, answer that question," sighs Dr. Paul Giella, who has been a part of Fisher's treatment team.

Things are being done. Irving Brudnick of Weston has struggled with deep depression all his life. Three years ago, he and his wife Betty contributed $1 million to endow a chair in psychiatric research at the University of Massachusetts Medical School and $2.5 million to help build the Irving S. and Betty Brudnick Neuropsychiatric Research Institute, which is affiliated with UMMS and located on the grounds of Worcester State Hospital.

The state Department of Mental Health contributed $7.8 million toward the $12 million research institute, which is only one of a few in the country devoted strictly to biological research into the causes, diagnoses and treatment of chronic and serious mental illness.

"Millions of Americans suffer the ravages of mental illness," said DMH Commissioner Marylou Sudders at the groundbreaking two years ago, "and in this increasingly complex, stressful , incidence of these biological diseases of the brain is growing. Clinical services are not enough. They must be supported by state-of-the-art research. It is the only way we can provide effective patient treatment and ultimately prevent these afflictions."

DMH currently has 11 facilities throughout the state: four are state hospitals, five are community mental health centers, and there are mental health units in two Department of Public Health hospitals. According to a DMH spokesperson, there are 1,218 beds in the 11 facilities and the agency is involved with 27,000 clients.

But thousands of people who are behind locked doors at state mental institutions or private hospitals pay scant attention to the hope of future research. Those with severe, persistent mental illness struggle to meet the goals of their treatment teams and survive what those who can articulate it call "the daily drudgery of institutionalism."

As Fisher puts it, "This hospital is all about smoking cigarettes and getting fat. Every day is the same here," he sighs, "and it's full of dead time. After 19 years of therapy, when is enough therapy enough?"

John is a recovering patient who insists the entire field of mental illness should be removed from the hands of psychologists and placed in the field of neuroscience. After years of commitments and therapy, John is finally out, stabilized on medications and feeling better than he has his entire life. He's studying for a financial investment certification thanks to the intervention of a neurologist.

Fisher and other patients agree that the staff at Worcester State Hospital can be caring and respectful. But the pervading atmosphere, they claim, is one in which the patient is told what to do, when and where to do it, with no questions asked. Although the terrors exposed in Titicut Follies, the 1967 "banned in Boston" documentary film that chronicled rampant abuse at Bridgewater State Hospital, are ancient history, today it's like being in the presence of a petty second-grade teacher who enjoys her tyranny 24 hours a day.

Gerald Mariano, who celebrated his 43rd birthday two weeks ago, has been in state mental facilities since he was 12 years old. He and Fisher have been friends since the mid-'70s. Mariano is scheduled to go to court to stop his psychiatrist from putting him on the anti-psychotic drug olanzapine, which causes massive weight gain.

"I'm already very much overweight," says Mariano, "I wouldn't want to get up to 450 pounds. Sometimes the doctors, when they prescribe medications, they're insensitive to the patient's plight, the patient's needs, simply because they don't take all the risks under consideration."

Able to speak five languages, Mariano is soft-spoken and articulate with an incredible vocabulary. A subtle sense of humor lights his eyes, which quickly cloud with doubt when he worries about his present state at the hospital.

"Sometimes they move too slow here as far as being put on the discharge list," he says. "I was on the discharge list but they took me off it because they wanted to take me to court and put me on Zyprexa [olanzapine's trade name], which I'm not in favor of going on."

Mariano remembers being in four-point restraints at a state hospital in the mid-1970s and asking to be let loose so he could go to the bathroom. When the staff denied his pleas, he defecated in his pajamas.

"The attendant came over with some old newspaper, wiped off the defecation," Mariano remembers, "and then wiped it on my face."

He, and so many others at Worcester State Hospital, have the patience of Job as they wait for release and the hope of a future that so many take for granted: The freedom to go for a walk when you want to, the simple pleasures of window shopping, of beginning a conversation with a stranger, of being treated like a human without the label of mental illness.

Fisher had to go to UMass Medical Center last July for a series of gastrointestinal tests. "It's amazing how much different you're treated," he noted on his return to WSH. "There was no condescension, just complete courtesy and professionalism. I want to bring up how it's a complete jail-house mentality here -- being behind locked doors and being told what to do and then forced to do it."

Fisher is a big man -- six foot one, 275 pounds. A large tattoo on the right side of his neck and a nose that has been broken more than once indicate this might be a man to be wary of.

But of course he is more than the initial appearance. He greets visitors and friends with an effusive hug, a kiss on the cheek and a smile on his face.

Friends are important to him, but as he ruefully points out, many patients at Worcester State Hospital have few visitors.

"Most of us have burned a lot of bridges in our lives," he candidly observes.

His hands constantly shake from the psychotic disorder drug Trilafon, which he has been taking for decades. His daily medications -- which he can quickly enumerate -- sound like some cocktail from the Physicians Desk Reference.  But he counts his blessings with a wry grin and says he could have the drooping mouth that accompanies the medication or kidney damage from Lithium poisoning.

Fisher is bipolar. Imagine the extreme swings of a pendulum -- one side is depression, the other mania where the person is hyperverbal, hyperactive. When a person is balanced between the two, it is said he is in a euthymic state. Fisher struggles to attain and maintain that balance.

Many people suffer their first psychotic episode in their late teens or early 20s. It isn't uncommon for parents to kiss their sons and daughters good-bye in September as they leave for college and welcome home a complete stranger at Christmas. It can happen that quickly, although changes can be subtler and occur over a longer period of time.

During his mania, Fisher remembers he gave away cash and jewelry, brought prostitutes to his mother's home, and spent money on booze and drugs as if he had found the pot at the end of the rainbow. He was generous to a fault, giving away money and clothing to the homeless or people less fortunate. During those times, there wasn't any thought about consequence or aftermath.

"It is a high," says Fisher. "I remember asking another patient if she had a choice between being manic or not, what would she choose? And she said manic, definitely. Even with all its problems, she wouldn't change for the world."

He was homeless on the streets of Southern California for four years; he has lived on the streets in New York City. He has been hospitalized at the Charles River Hospital, both Medfield and Bridgewater State Hospitals, as well as at a private, therapeutic community in San Diego for three years. He lived on his own in an apartment in Northampton for a year. He points out that he has had more than 20 AWOLs during all his years at Worcester State Hospital, but at Hanbleceya, the community in San Diego, there wasn't a single lapse in the three years he was there.

"The doors at Hanbleceya were never locked," remembers Fisher. "It was founded by an ex-schizophrenic, which gave it the sense of 'us,' of community. That's also the magic of the Genesis Club."

He's proud to say that in the more than 20 years of being in state mental institutions and incarcerated at penitentiaries or at the house of correction, he has initiated only one assault. His hospital record documents three instances when psychotic patients assaulted him on his wards and he did not strike back. So why has he spent 46 months of his life at Worcester State Hospital on charges of disorderly conduct and disturbing the peace? Charges that are minor criminal misdemeanors that usually result in a small fine and perhaps 10 to 30 days at a house of correction? Charges that Fisher was subsequently found not guilty of?

He was committed for treatment because of his "well-documented mental illness," says paperwork in his file, which chronicles numerous hospitalizations -- and just as numerous escapes.

Fisher counters that he should have been released months or even years ago because he is not a danger to himself or others. He says he does not do well in a confining environment and realizes he has to take his medication. As the paperwork indicates, "At present [August 2000], Mr. Fisher is unwavering in his commitment to continuing psychiatric medications. He clearly recognizes and accepts that he has a major mental illness. He further recognizes that his condition is fragile and that he requires a comprehensive continuum of care for management."

Fisher has approached freedom several times since his hospitalization in July 1997. But each time he went AWOL weeks or even days before release, he drank, wound up at a hospital for his medications -- the most recent escapade in New York City -- and then got trucked back to WSH, where he had to re-establish credibility with the staff.

He says this time he's working hard to complete the goals set out by his treatment team and is determined to make it out of the hospital and into a supported apartment.

Two of his lifelines are the pay telephone at the end of the hall and his newly acquired cell phone that his mother bought for him. Another lifeline is the Genesis Club on Lincoln Street. It offers a breath of hope in a life that is too often full of despair. The only requirement to join the Genesis Club is that the person must have a history of mental illness.

Kevin Bradley is the soft-spoken, seemingly infinitely patient executive director of this nonprofit organization that was established in 1988. One of its founding members was Lawrence Fisher, Bobby's father. Bobby's mother Doris still sits on the board of directors.

"Kevin Bradley is a sweet, humble man," confirms Fisher. "Their program is very dynamic, very progressive; there is no difference between the staff and the members."

That observation is confirmed during a recent interview with Bradley in the club's dining room. Members and staff cleaned off the tables from breakfast, as others prepared a special treat for lunch -- baked stuffed shrimp.

Genesis is founded on the model first proposed and brought to life by former patients who had been discharged from state institutions in New York. Founded in 1948, Fountain House in New York City is the umbrella organization for more than 256 clubhouses in 18 countries and 32 states. With 27 clubhouses, Massachusetts leads the vanguard in this member-involved, community-based model.

Ten years ago, there were no clubhouses for the mentally ill in Great Britain -- today there are more than 20 that were helped into existence by the members and staff of Worcester's Genesis Club. Bradley has just returned from helping to organize Ireland's second clubhouse.

A member, Ed Rioux, recently conducted a tour of the facility on Lincoln Street, situated in a 19th century Victorian home. The former funeral home next door has also been converted into office spaces for Genesis. The organization is in the middle of a major capital campaign to raise more than $800,000. Their plans are to connect the two buildings, build a conference center, install an elevator, and make the upper floors handicapped accessible. Another goal is to eliminate the waiting list and serve up to 100 members a day.

As we walked through the connecting offices -- closed doors are not allowed -- the housing group was just getting ready to interview someone, but took a moment to explain their duties. In another room, a woman staffed the support phone line, which is operational 24 hours a day. Next door, a group of people scoured the newspaper, looking for potential employers to contact or possible jobs for members. In another room, a white board was updated with the names of the 20 companies that have a business affiliation with Genesis House. Members make sure that someone will show up for the shift at Tatnuck Bookseller, for instance, so the retailer is not caught understaffed.

"We have been running the mailroom at the Worcester Art Museum for 10 years now," explains Bradley. "We're very proud of that relationship."

Banking services can even be done at the club, the paperwork attended to by both staff and members.

But a member doesn't have to do a job if they don't want to.

"Some aren't ready for that yet," says Bradley. "Maybe they just need to come here to sit and smoke and slowly acclimate themselves. But you know, it's amazing how eventually, each of them turns around and gets involved."

Michael McAuliffe, a graduate of Holy Cross, remembers the onslaught of his mental illness began slowly but increased steadily. A theology major with an A-average in his freshman and sophomore years, his grades plummeted as his illness progressed. He squeaked by with a diploma before plunging into a world of despair, hopelessness and homelessness. He now has his own apartment, holds a part-time job as a security guard at the Worcester Art Museum, and is a member of the Genesis Club.

Mickey, another member, has been to Norway to help organize a clubhouse in that country. He advises visiting international groups who want to understand how the Genesis Club operates. He also visits fledgling clubhouses around the world to point out weaknesses and strengths.

Clubhouses are a unique and invaluable approach to those with mental illness.

"I wouldn't be alive today, I wouldn't be who I am or where I am without the Genesis Club," McAuliffe states quietly.

After 43 months at Worcester State Hospital, Fisher says he is ready to begin the next chapter in his life on the outside.

On Super Bowl Sunday he had a day pass from noon to 11 p.m. He took a walk by himself along Highland Street, rented a few videos, enjoyed a cup of cappuccino and had lunch with his mother at a local restaurant. He watched the Baltimore Ravens beat the New York Giants at the Genesis Club.

"It was mellow," he explains. "Just to be able to taste that freedom was incredible.

"I don't want to drug or drink anymore," he says. "There's no chance. I had money and all that time on Sunday and I didn't even think about it. When you get the message, hang up the phone," he laughs. "I just want to be myself."

He enjoys day passes seven days a week now. In March, if he keeps things under control, he might begin a program where he will move into an apartment with a live-in support aide.

"If I continue to be stable, I'll be there full-time. I'll still be a DMH patient so if I get manic during those last two months, they can still hospitalize me."

Stan Goldman is the director of mental health litigation at the Committee for Public Counsel Services in Boston. "Typically in our society, we incarcerate somebody because of what they've done, not for what we think they're going to do in the future," says Goldman. "But that's what commitment is all about for the mentally ill. They're not committed for six months or a year because of something they've done in the past -- the way they would be in the criminal justice system -- they're being incarcerated for six months or a year because of fear of what they might do in the future. It happens everywhere, and all the courts, all the way up to the Supreme Court, have said that's okay, but if you think about what's going on for a moment, that just flies in the face of American jurisprudence."

Fisher's life story echoes the observation by a veteran psychiatric nurse who said men with mental illness tend to be incarcerated while women with mental illness tend to be hospitalized. Fisher has had his share of both institutions. He says it's time he got on with his life.

Even though Fisher had some harsh words to say about the hospital last summer, today he says, "Even though Worcester State has a long way to go, it has come a long way." He points out that the van trips to basketball games or bowling, the shopping passes, the classes in creative writing, coping mechanisms and substance abuse all help him prepare for the next step in his life.

"I've seen so many different forms of psychiatry, the latest fad is just another shtick to me," muses Fisher. "Bipolar is a horrible disease. I'm also a male, I'm also a Jew for Jesus, I'm a Gemini. Why define myself only by my mental illness? There are holistic practitioners on the West Coast who won't even use that psychiatric vernacular. I take my meds and keep things under control. Bipolars are some of the most dynamic and creative people I've ever met. Given a choice, we'd have it again because of all that creativity and euphoria." The first time I met Bobby Fisher I was thrown off his ward for trying to speak with him without initially clearing the meeting with the Worcester State Hospital administration.

But I had cleared it with the attorneys who advocate for people with mental illness. And the meeting happened at Bobby's invitation, after several telephone requests, rather than on some mere journalistic fishing expedition.

"It's his Constitutional right to speak with you," one lawyer told me emphatically before I drove over to the eight-story brick building off of Belmont Street. "You don't have to get prior approval from anyone."

Bobby and I met in the visitor's room behind the locked doors of Ward 6A to discuss his 24-year battle with bipolar manic depression. A mother and father were already sitting around the rectangular table, visiting with their daughter who lives on the same ward as Bobby.

"I wonder if we can go somewhere else," Bobby murmured.

He approached the staff member who sat by the little table at the ward's exit and asked if there was another room available where we could talk.

"She's a reporter with Worcester Magazine," he said, pointing his thumb at me over his shoulder.

That's when it all fell apart.

The charge nurse was summoned. "Did you get clearance from the administration?" she asked me.

"No, I didn't," I responded.

She looked incredulous. "You can't speak with him until we get clearance from Dr. Kennedy," she admonished, referring to Bobby's staff psychiatrist. "No interview with him until we okay this."

"But it's my Constitutional right to speak with her," Bobby insisted. "Dr. Kennedy already okayed this. I already talked to him about her coming up."

"No interview," the nurse insisted, dialing the doctor's number.

Neither the doctor nor an administrator was available to clear the interview, despite Bobby's rights, Constitutional or otherwise. His legal guardian, Dennis Yeaw of Shrewsbury, was not in his office, either.

Bobby and I began to chat about his family, about his 35-month stay in the hospital.

"No interview," the nurse repeated.

"I'm not interviewing him, I'm talking to him," I responded.

When Bobby and I began chatting again, the nurse shot me a look.

"You'll have to leave," she declared.

I glanced at Bobby, who had been looking forward to our conversation for more than two weeks. He got out of his chair and began to pace, frustrated over the turn of events.  His disappointment was obvious.

The nurse pulled out her string of keys, unlocked the door, and literally showed me the elevators.

As I looked back, Bobby was walking back and forth, his voice full of tension and frustration as he repeated that all he wanted to do was talk to me. Instead of talking, a locked door now separated us and mid-level hospital administrators scurried around, keys dangling from their wrists as they tried to determine how to deal with me.

"I'm so sorry this happened," Bobby repeated from inside the ward, his face pressed against the little wire-screened window in the middle of the door.

"Don't worry, Bobby," I jokingly told him. "I've been thrown out of better dumps than this place. We'll talk again."

That was May 2000. It would take the Worcester State Hospital administration 42 days before they finally allowed me to sit and talk with Bobby Fisher. By way of explanation, the hospital's interim Chief Operating Officer Dr. Thomas Horn said their primary concern is with a patient's stability and until an interview is cleared with a patient's guardian, no interview would be allowed. When he was contacted, Yeaw thought the interview would be beneficial for Bobby and gave his full support. A request to spend a day on a ward with the staff, however, was denied by Horn.

--M.A.

The letter of the law

Stan Goldman is the director of mental health litigation at the Committee for Public Counsel Services in Boston. Better known as public defenders, the attorneys with CPCS represent indigent clients when they have to go before a judge, whether in a criminal matter or regarding mental health issues.

Goldman says the criteria for commitment to a facility in Massachusetts are relatively high compared to other states. "It's beyond a reasonable doubt, the same standard as the criminal context," explains Goldman. Although it should then be difficult for a hospital to prove its case for commitment, Goldman says it's actually relatively easy in practice for several reasons.

There are not enough community-based programs available for people once they are released from a state hospital. Goldman says it's not unusual for a judge, knowing there's a lack of such services -- and despite the fact that the hospital does not meet the legal criteria for commitment -- to deny a person's release.

"In Massachusetts, the judge is faced with a black-and-white, either/or decision" Goldman says. "Either he or she commits or doesn't -- there's no mechanism by which a judge can say you don't need to be in a hospital, but I require you to stay in a group home. There is no outpatient commitment, which there is in other states."

Which might be a good thing, notes Goldman. He says numerous studies have shown that forcing somebody to undergo treatment, forcing them to stay in a setting they don't want to be in, is not helpful for their recovery.

"The vast majority of patients in that type of situation typically don't get the kind of services they need and even if they do, they don't typically benefit from them when it is coerced," Goldman says. "The state shouldn't be in the business of incarcerating somebody when they're not particularly dangerous."

Goldman also says many judges are deferential to so-called experts. From the judges' perspective, it's hard for them not to commit when a psychiatrist is telling them the person needs to be in a hospital.

"The reality," says Goldman,  "is that clinicians have never been shown to be more able to accurately predict behavior -- let alone violent behavior -- than anyone else. Yet they're the experts; judges will routinely defer to those predictions, those opinions. In fact they shouldn't."

While Goldman admits some patients have a need for a locked facility, he maintains those patients are few in number.

"I can't deny that there are people who are mentally ill and very dangerous," Goldman explains. "But not necessarily because of the mental illness. They're just dangerous. I would guess that very, very few of the people you see at Worcester State Hospital or the other DMH facilities that have been there for any length of time couldn't safely be outside as long as they have some supports."

But that takes money and understanding.

"It all boils down to money," agrees Goldman. "There just needs to be a huge infusion of funding and in Gov. Cellucci's latest budget proposal is what I consider to be a baby step -- but at least it is a step in that direction -- to provide more funding for those services."

But advocates for the mentally ill insist the state needs to do more. Last November, the state Mental Health Legal Advisors Committee , the Center for Public Representation, and a Boston law firm threatened to file a class action suit against the Commonwealth on behalf of some 1,500 state residents who claim they were wrongly hospitalized, improperly discharged, or abandoned in the community without proper support.

Frank Laski , the executive director of the Mental Health Legal Advisors Committee, says they are now in negotiation with the state, and are meeting with representatives from the attorney general's office and DMH.

"We asked them to develop a plan by which all the residents of the various state hospitals would have an equal opportunity for community placement," Laski says. He says they are asking the state to re-assess people on the discharge waiting list and to provide funding for that discharge and subsequent support.

--M.A.

Martha Akstin may be reached at mmakstin@worcestermag.com