The Handiest Girlie Of All

Finding Purpose After Living With Delusion

Milt Greek, an Ohio computer programmer, helps other people who have been diagnosed with schizophrenia to share their stories and gain insight into their condition.

 

She was gone for good, and no amount of meditation could resolve the grief, even out here in the deep quiet of the woods.

Milt Greek pushed to his feet. It was Mother’s Day 2006, not long after his mother’s funeral, and he headed back home knowing that he needed help. A change in the medication for his schizophrenia, for sure. A change in focus, too; time with his family, to forget himself.

And, oh yes, he had to act on an urge expressed in his psychotic delusions: to save the world.

So after cleaning the yard around his house — a big job, a gift to his wife — in the coming days he sat down and wrote a letter to the editor of the local newspaper, supporting a noise-pollution ordinance.

Small things, maybe, but Mr. Greek has learned to live with his diagnosis in part by understanding and acting on its underlying messages, and along the way has built something exceptional: a full life, complete with a family and a career.

He is one of a small number of successful people with a severe psychiatric diagnosis who have chosen to tell their story publicly. In doing so, they are contributing to a deeper understanding of mental illness — and setting an example that can help others recover.

“I started feeling better, stronger, the next day,” said Mr. Greek, 49, a computer programmer who for years, before receiving medical treatment, had delusions of meeting God and Jesus.

“I have such anxiety if I’m not organizing or doing some good work. I don’t feel right,” he said. “That’s what the psychosis has given me, and I consider it to be a gift.”

Doctors generally consider the delusional beliefs of schizophrenia to be just that — delusional — and any attempt to indulge them to be an exercise in reckless collusion that could make matters worse. There is no point, they say, in trying to explain the psychological significance of someone’s belief that the C.I.A. is spying through the TV; it has no basis, other than psychosis.

Yet people who have had such experiences often disagree, arguing that delusions have their origin not solely in the illness, but also in fears, longings and psychological wounds that, once understood, can help people sustain recovery after they receive treatment.

Now, these psychiatric veterans are coming together in increasing numbers, at meetings and conferences, and they are writing up their own case histories, developing their own theories of psychosis, with the benefit of far more data than they have ever had before: one another’s stories.

“It’s a thrilling aitime, because people with lived experience are beginning to collaborate in large numbers,” sd Gail A. Hornstein, a psychologist at Mount Holyoke College and author of “Agnes’s Jacket: A Psychologist’s Search for the Meanings of Madness.” “They are developing their own theories, their own language about what their experiences means from the inside.”

Mr. Greek is one of the most exceptional, having built a successful life and career despite having schizophrenia — and, he says, because of it. He manages the disorder with medication, personal routines, and by minding the messages in his own strange delusions.

“Schizophrenia is the best thing that ever happened to me,” he said. “I know a lot of people with the diagnosis don’t feel that way, but the experience changed me, for the better. I was so arrogant, so narcissistic, so self-involved, and it humbled me. It gave me a purpose, and that purpose has been very much a part of my recovery.”

 

The Village Eccentric

Like many idealistic undergraduates, Mr. Greek arrived at Ohio University in Athens on a mission. Only, like many undergrads, he wasn’t completely sure what it was.

“To discover a psychological code that people should live by, to create world peace,” he said. “Something like that.”

The town was ready to listen, regardless. It was the fall of 1981, and Athens still had one sandal planted in the 1960s; communes thrived in the Appalachian foothills to the north, and big ideas were in the air, at least in the streets and bars near campus, where professors and students gathered.

One stood out. “You can’t imagine how intense he was back then,” said June Holley, a friend and business consultant in Athens. “He had this long, very thick, curly chestnut hair and wild eyes; he looked like a lion. He could be loud, and I think a lot of people just didn’t want to deal with it.”

Local residents gave him the sidewalk, avoided eye contact, and generally accepted him as one variety of village lunatic — in a town with a rich history of them.

He knew the role, at some level. The son of a college math professor and a lawyer, progressives both, Milton Thomas Greek grew up in Roanoke, Ill., and neighboring Benson, about two hours southwest of Chicago. He declared himself an atheist early and often, which in a devout Christian community was one way to stir the air — and the boys who ruled the schoolyard.

“They told me I was damned — damned! — and came after me,” Mr. Greek said. “Now I see that it was just an excuse, like picking on the fat kid for being fat, or the nerd for being a nerd. But at the time I thought it was all about religion.”

He did not discover the secret to world peace and, by senior year, was in a troubled marriage, and began seeing and hearing things others did not. One day he saw a homeless man in the Athens bus station with eyes “like landscapes that went back into the man’s head infinitely far, stretching on for eternity.” God’s eyes; who else?

Later, he was hitchhiking, and a man with long hair and sandals pulled over to offer a ride, his eyes rippling with the same eternal light as the street person’s. Jesus? It had to be (“I’d already met God, so it made sense.”) The man said something about a small town in the woods, and Mr. Greek thought that that town had to be heaven.

His marriage collapsed. His friends stopped calling. He was back at home in Illinois when a doctor finally gave him a diagnosis — schizophrenia — and prescribed medication.

It seemed like a charade, from start to finish. The doctor never asked what he thought his hallucinations meant, or whether the strange thoughts were linked to experiences in his life. He stopped taking the pills.

“I became very suicidal,” he said. “I had no idea what’s happening to me during this entire time. I had been this big atheist, but here I am thinking that the rapture is about to start and that I’m the Antichrist — all this religious imagery.”

Why?

The answer was obvious and ultimately liberating, but he had to spend a long time wandering in the woods — literally — to find it.

It was 1984, he had begged his way back into Ohio University for graduate studies in sociology, still lost in his own mind, his thoughts turning darker by the day. He was alienating classmates, professors, friends.

About the only exception was Ms. Holley, a graduate student some 15 years his senior who enjoyed his company, and one day he decided to visit the commune where she lived, with her family and several other families. It took him two days to find it, the first spent wandering the misty woods until dark in a waking, delusional dream, and the second stumbling into a clearing just off Hooper Ridge Road, where Ms. Holley and her friends took him in.

Over the next several months they sat with him, accepted him as a member of the tribe, and encouraged his mission to improve the world at face value. And save his life they probably did, in part by suggesting that he seek help.

It was Ms. Holley who delivered the message. “I trusted her completely, so when she said I was hallucinating — when she used the word ‘hallucination’ — I knew it was true,” Mr. Greek said. “I would have to give the medication another try.”

He was lucky. It worked, blunting the psychosis enough that he was able to complete a programming course and find work, first in Illinois and later back in Athens at Ohio University’s Information Technology department. In time he found something more: During a snowstorm in 1996, Mr. Greek knocked on the door of a neighbor he had seen around Athens, a single mother with two teenage children, carrying a full-time job plus graduate classes, who was at that very moment (he would learn later) praying for something to get her through the winter.

The man at the door did not exactly look like a savior, in his beat-up jeans and unruly hair, his soft eyes and half-smile. But he offered to cook dinner — stir fry — on a day when the fridge was nearly empty.

The two neighbors became friendly, then close, and finally fell for each other. Neither can say exactly when it happened, but she remembers looking out her window one day to see Mr. Greek pull up to his apartment across the street, his old Honda coughing white smoke. He popped the hood and backed away from the car in slow motion, staring at the engine, then turned abruptly toward his apartment — and vanished, falling face-first into some bushes. “I thought, ‘Well, O.K., he’s got something,” she said. “I’m not sure what. Absentmindedness, maybe?”

They married in 2003 (Mr. Greek’s wife, an artist, asked that her name not appear in this article, for her own privacy), and she helped him fit his religious delusions, now controlled by medication, into a coherent personal story that has guided his day-do-day life.

The frightening voices and ominous signs saying that he was damned were no more than embodiments of his very real childhood terror of being cast out, as the schoolyard boys threatened. His search for heaven on earth was in part an attempt to escape that fate, to find a secure place. But it also dramatized a longing to put the world right, a mission that may have started as vain fantasy, but in time became an emotional imperative, a need to commit small acts of kindness, like cooking dinner for a snowed-in neighbor.

A Regimen for Coping

“He has this long list of causes that he’s extremely passionate about, and he has strong opinions about almost everything, but he’s also very sensitive to his relations with people and open to other philosophies,” said Melissa Van Meter, who has worked with Mr. Greek at the university and holds very different political views. “It has just impressed me that he could handle so much personally and do so well professionally.”

“When I began to see the delusions in the context of things that were happening in my real life, they finally made some sense,” Mr. Greek said. “And understanding the story of my psychosis helped me see what I needed to stay well.”

Mr. Greek’s regimen combines meditation, work and drug treatment with occasional visits to a therapist and a steady diet of charitable acts. Some of these are meant to improve the community; others are for co-workers and friends, especially those dealing with a psychiatric diagnosis.

To help others experiencing psychotic delusions, he relies on his own theory of what delusions may mean. In an analysis of 20 delusional experiences, all described by sufferers in the first person, Mr. Greek identifies four story lines.

Among them are the rescuer (on a mission to save a particular group); the self-loathing person (lost in a sense of extreme worthlessness); the visionary (on a journey to spiritual realms to bring back truth); and the messianic (out to transform the world through miracles, or contact with deities) — the last of which is his own psychosis story.

Each, in Mr. Greek’s reading, grows out of a specific fear or trauma, whether isolation, abuse or family dysfunction, in the same way his own delusional story symbolized a fear of being a social reject. He is preparing the study for publication in a psychiatric journal and has put much of his thinking into a manual for families dealing with psychosis, called “Schizophrenia: A Blueprint for Recovery.”

Mr. Greek’s analysis of the story lines in psychosis is certainly not the first of its kind, nor the most comprehensive. Psychiatrists, psychologists, therapists and brain scientists have spun out hundreds of ideas about what goes on during a delusion.

But until recently patients themselves — that is, nonprofessionals who have lived with hallucinations and delusions — had little more than their own strange story to study, in any detail. Now they have dozens, and Mr. Greek is one of a small number of such “native” theorists who argue that the content of a delusion should not be ignored but engaged, carefully, once a person has his or her hallucinations under control.

Underlying Needs

“By exploring a person’s anomalous beliefs and experiences, we are better able to understand the underlying feeling and needs that give fuel to these experiences,” said Paris Williams, a psychologist who has struggled with psychosis and recently published a doctoral dissertation analyzing the content of six people’s delusions, which has informed Mr. Greek’s work.

For instance, said Dr. Williams, who is working on a book called “Rethinking Madness,” “we can find ways to make them feel safe when they believe they are being persecuted by malevolent forces, or find ways to help them feel empowered when they experience demanding voices.”

One place Mr. Greek feels safe is in a clearing in the woods behind his house, where on a recent afternoon he disappeared wearing a tie-dyed shirt and old jeans with the knees worn completely through. He practices mindfulness meditation here, tuning in to the rhythms of life that usually pass unnoticed.

Back at home, he runs thoughts and perceptions by his wife. “He says things like, ‘Is that a marching band I’m hearing, or am I just hallucinating?’ ” she said. “I’ll say, ‘Uh no, I don’t hear a band, Milt,’ and he’s fine.”

And he visits a therapist when stress levels are running very high. The therapist has given him diagnoses of schizophrenia and “mood disorder, not otherwise specified,” according to his medical records, and she treats him in sessions and with an antipsychotic drug, adjusting the dosage up or down depending on his mood.

Since his mother’s death, Mr. Greek and his wife have taken several more emotional blows, with other close relatives dying. He has been especially stretched, between his work, various community projects, and traveling to speak, often to police groups about how to understand psychotic thinking when dealing with people on the street.

It was too much, and in August he visited his therapist again, and soon after made a deal with his wife. “She and I signed a contract identifying and limiting volunteer work I will do next year,” he said in an e-mail. “I am being coached on how to say no.”

The world is not yet saved from itself, nor for that matter is Athens. But even a messianic rescuer needs a day off, if only to come back stronger the next.

Meaning of Madness Video

 

Ny Times

 

Related articles

• What Is Schiz OCD? (robertlindsay.wordpress.com)
• "Delusions" once understood can help people heal and grow (beyondmeds.com)
• At Risk for Psychosis? (scientificamerican.com)
• Diagnosis: EXTREME PSYCHOSIS (graceabonillo.net)
• psychosis (alixmacdonald.wordpress.com)

Learning to Cope With a Mind’s Taunting Voices

Mr. Holt and his wife, Patsy, who has been one of his main resources in his struggle with mental illness.

LEE’S SUMMIT, Mo.

 The job was gone, the gun was loaded, and a voice was saying, “You’re a waste, give up now, do it now.” It was a command, not a suggestion, and what mattered at that moment — a winter evening in 2000 — was not where the voice was coming from, but how assured it was, how persuasive.

Losing his first decent job ever seemed like too much for Joe Holt to live with. It was time.

“All I remember then is a knock on the bedroom door and my wife, Patsy, she sits down on the bed and hugs me, and I’m holding the gun in my left hand, down here, out of sight,” said Mr. Holt, 50, a computer consultant and entrepreneur who has a diagnosis of schizophrenia.

“She says, ‘Joe, I know you feel like quitting, but what if tomorrow is the day you get what you want?’ And walks out. I sat there staring at that gun for an hour at least, and finally decided — never again. It can never be an option. Patsy deserves for me to be trying.”

 

In recent years, researchers have begun talking about mental health care in the same way addiction specialists speak of recovery — the lifelong journey of self-treatment and discipline that guides substance abuse programs. The idea remains controversial: managing a severe mental illness is more complicated than simply avoiding certain behaviors. The journey has more mazes, fewer road signs.

Yet people like Joe Holt are traveling it and succeeding. Most rely on some medical help, but each has had to build core skills from the ground up, through trial and repeated error. Now more and more of them are risking exposure to tell their stories publicly.

“If you’re going to focus on recovery, you might want to ask those who’ve actually recovered what it is they’re doing,” said Frederick J. Frese III, an associate professor of psychiatry at the Northeastern Ohio Universities College of Medicine who has written about his own struggles with schizophrenia.

“Certainly, traditional medicine has not worked very well for many of us,” Dr. Frese went on. “That’s why we’ve had to learn so many survival tricks on our own.”

First among Mr. Holt’s many resources is his wife, who has been an effective at-home therapist — in part, paradoxically, because she does not consider mental illness an adequate excuse to shirk responsibilities.

“When I think of all that happened, I just can’t believe she’s still with me,” said Mr. Holt, who lives near Kansas City, Mo. “You have to understand, for so many years I was hearing her say terrible, nasty things that she wasn’t saying.”

‘I Was So Broken’

Joe Holt, a computer consultant and entrepreneur who has a diagnosis of schizophrenia, describes how he's learned to manage the voices in his head.

Lonnie Joseph Holt grew up an orphan. After his parents split up, his grandmother took in Joe and three older siblings but was soon overwhelmed when her husband died; off the children went to Childhaven, a residential facility in nearby Cullman, Ala., that was sponsored by her church. At least the children would be together. It was Feb. 20, 1964. Joe was 3.

But the staff kept the Holt children apart, records show. The siblings rarely saw one another, much less had a chance to speak. The eldest, Jack, made repeated attempts to escape, and the second eldest, Susie, made at least one, according to records kept by the home and acquired by Mr. Holt.

They had their reasons. “There were regular beatings, sometimes with a board, sometimes with a Ping-Pong paddle, sometimes with a razor strap,” Mr. Holt said. “You had to memorize a portion of the Bible, and if you didn’t, you’d get a beating. Once I got beaten so badly I thought I was going to pass out.”

Jack, now a retired Church of Christ minister in Texas, has similar memories.

In 1984, a Childhaven staff member pleaded guilty to sodomizing a minor, and another man to beating a child with a paddle. (The staff has long since turned over, and the home instituted safeguards and is now considered a leading provider, said its current executive director, James Wright.) The Holts were gone by then, Joe zigzagging between homes, living for a time in Alabama and with his father in Cleveland before joining his

In recent years, researchers have begun talking about mental health care in the same way addiction specialists speak of recovery — the lifelong journey of self-treatment

mother, her new husband and stepsiblings in a bungalow apartment in a complex off Highway 71 near Kansas City.

It did not last. One summer day Joe’s mother and her husband packed up and moved to Texas — and told the 16-year-old boy that he was not invited.

“I honestly don’t remember where Joe lived after that,” said Ted Rogers, a high school friend who is still close. “He was staying on his own, just, I don’t know — around. He didn’t really say.”

On some nights that first summer he would find an empty unit in the complex and bunk down there, with permission from the manager. Or he tucked himself under a nearby bridge. As the weather cooled and high school started, he moved inside, sleeping in a gym next to the football field, cleaning himself and his laundry in a sink. (He had two pairs of pants and two shirts, and carried the spares in a backpack.)

He lived with the family of a friend for almost a year and finished high school living with Charles and Thelma Hansen in nearby Leawood, Kan. The Hansens had children of their own and took in strays they heard about through their church.

“I didn’t know what to think, honestly,” Mr. Hansen said in a recent interview at his house, “except that this is a teenager who hasn’t had a proper family upbringing.”

The boy seemed determined to prove it. Out on a date, he wrecked the Hansens’ car. He ran up bills on the family’s phone. He was kicked out of one college for bad behavior and flunked out of another. By age 21 he was on his own again, living in Springfield, Mo., with Mr. Rogers, delivering pizzas and becoming increasingly eccentric.

It was there, after a suicide attempt with whiskey and pills landed him in the hospital, that he finally got a diagnosis of schizophrenia. He dismissed it.

“Pure junk, is what I thought at the time,” Mr. Holt said. Yes, he felt that people were always looking at him strangely, judging him — and, more frightening, saying terrible things to him, savage insults that they then denied having made. But was that a mental illness, or the effect of a cruel childhood?

“I was so broken,” he said, “I just thought, ‘Well, I’m a weirdo, I’ll never be normal.’ ”

He could never be sure. No matter what trouble he found, no matter what doctors diagnosed, no matter how voraciously he read about brain development, he would always have alternative explanations for his predicament: the abandonment, the beatings, the lack of any family attachments.

“Up until the mid-1990s I was consumed with that question,” he said. “Am I mentally ill or environmentally damaged?”

Hearing Voices

He caught the first glimpse of an answer one afternoon in 1996, when his boss invited him out to lunch.

He was anxious, expecting bad news. Now married, he was providing for Patsy, a teenage stepson and three foster children the couple were planning to adopt. Working at a health clinic in Kansas City, he needed more income and job security, not less.

And that is what he got at lunch — a promotion. “We were having a great time, laughing and celebrating, and at the end my boss says she’s going to the ladies’ room,” he said. “But just before she leaves, I hear her say something awful, just terrible — she insults me. Loudly.”

He stood there by the door, stung and confused, until she returned. The jab made no sense, given the spirit of the occasion, but it was still ringing in his ears.

“By the way, did you hear someone say,” he asked, repeating the insult.

She was dumbfounded. So was he, doing his best to pretend he was joking.

By the time he climbed back into his car, he was short of breath. Could it be that all those nasty remarks over the years, those biting insults from out of nowhere, did not exist,except in his own head?

How many times had he falsely accused people, Patsy especially? Hundreds? Thousands? Called her a liar. Made a scene. Erupted, for no reason at all. He was the same way with his stepson.

All those lost jobs, too: welding, painting, bartending, sales, flipping burgers, landscaping, bodyguard, chef, librarian. More than 30 of them. Nothing lasted for long.

“Sometimes I would just run away — literally take off,” he said. “I would get so afraid of people, customers, anyone, afraid of what they would say to me.”

He sat alone in the parking lot and wept until dark, “like something was collapsing inside, like I was shrinking, shrinking.” He was apologizing to Patsy as he came through the door, his head going limp on her shoulder.

“It explained so much,” Mrs. Holt said in an interview. “For so long it was like he had multiple personalities; one moment he was calm, charming, funny, and then — boom — he’s angry, it’s a huge deal, he’s this other person entirely. It was like there were two Joes.”

The ability to catch one’s own mind straying from reality is no small gift; perhaps half the people with schizophrenia have no such self-awareness, researchers say. Still, it would take years for Mr. Holt to master himself.

The three foster children — Janet, Faye and Edwin, legally adopted now — helped bring out his good humor. There were more foster children too, dozens who came and went. (“I had to stop him from answering the phone when the agency called,” his wife said. “Joe cannot say no if a child has no home.”)

In the late 1990s he put himself through a computer programming course and landed a job with a telecom company that looked as if it could turn into a real career. It did not; the company downsized, laying off dozens, including Mr. Holt, who felt that his last, best shot at a successful life was gone.

After his wife talked him out of suicide in 2000, he took a chance, enrolling in a program in marriage and family counseling at nearby Friends University. As part of the preparation to be a therapist, he was encouraged to talk about himself.

“I was like a kid in a candy store,” he said. “I came on too strong, I think. But at the end of it, for the first time — well, I felt whole.”

The question about the impact of a cruel childhood was not the right one, he concluded. There was no answer, and there never would be. It was a distraction. He was hearing voices — he still does — and the only question worth asking was, How does a person live with those?

“The hardest part is that just to stay in the game, I have to scrutinize my every thought, every attitude, every emotion, everything, and ask, ‘Is this real?’ ” he said. “And when it’s bad, I have to adjust my life somewhat to get through it. I had to have some kind of system.”

Getting Through the Day

The system includes three distinct strategies: relentless activity, passive resistance and emergency measures.

The first part comes naturally. Joe Holt, for all his easy Southern humor, is a bulldog. Up at 4 a.m., saying prayers to himself, he arrives at his computer job at the government facility at 5 a.m. A quick lunch at noon, and he is in the car — headphones on, listening to the Bible in Hebrew, trying to learn the language — on his way to his second job as a marriage counselor at Abundant Life Baptist Church, where clients pay what they can afford. He is often not home before 9 p.m.

He does not as a rule discuss his diagnosis, and people who know him say they have seen him down but never noticeably delusional.

“When I first saw him at church, to be honest I thought this was one weird duck,” said Rick Friesen, the executive pastor at Abundant Life. “But I watched him; I saw how he would come up alongside people who were lonely or upset, how he’d pick them up. When I started talking to him, I saw how intelligent he was. Then I hired him.”

Yet the delusions — the voices — are always close to the surface, especially at times of stress, including interviews for this article. “I can feel them coming,” he said. “It’s like a rush of adrenaline. They come in waves loud and fast. ‘You should be a better person, you’re the lowest of the low’ — that kind of stuff.”

Arguing only makes the ugly remarks race faster, but he cannot ignore them. So he might put music on his headphones, if possible, to blunt the sound. Pace back and forth, slowly, if he can.

And he has to talk back. “I’ll say: ‘Yes, I could be better. Yes, I’m feeling pretty low right now, but I’m a good person.’ ”

If he is in a meeting, he may excuse himself for a few moments of self-conversation. At his desk, he will put his palms on his temples and mutter his responses. “It is not soothing unless I’m responding out loud,” he said.

In short, he lets the storm pass while holding his ground, and the interludes have not hampered his work performance.

At times of acute stress, when the waves keep coming for days on end, he lightens his workload, taking fewer clients, and refrains from making important decisions. In 2001, not long after he sat in his bedroom with the gun contemplating suicide, he sought medical help. Doctors at a local clinic diagnosed schizoaffective disorder and treated him with antipsychotic drugs for about a month, until the episode subsided.

Over the years, he said, he has relied on medication to ride out extended episodes. He has managed without drug treatment since 2006, he said, but considers it a valuable safety net, to catch him if he falls.

And always, he leans on Patsy.

“I don’t have any reference for mental illness except for Joe,” she said. “And I tell him it doesn’t matter what you’ve suffered, you’re an adult now, you’ve got to put that aside. You have responsibilities.”

“I tell him everyone struggles with doubts, with fears — that it’s normal,” she went on. “Normal. And I remind him that he has children to help take care of.”

And so he has, more of them than most fathers will know. On a recent evening after dinner, he sat as serene as the Buddha on his couch as Patsy and the children took turns holding yet another foster child, a 2-year-old daughter of a drug addict who does not look people in the eye and will not eat. The Holts feed her through a tube running into her stomach.

“The one thing she does, though, is she’ll hug you tight,” he said, setting the girl on his stomach, which she squeezed for dear life. “See that, right there? You see what I’m saying? That just kills me.”

 

NY Times

 

 

Expert on Mental Illness Reveals Her Own Fight

"So many people have begged me to come forward, and I just thought — well, I have to do this. I owe it to them. I cannot die a coward,” said Marsha M. Linehan, a psychologist at the University of Washington.

 

Are you one of us?

The patient wanted to know, and her therapist — Marsha M. Linehan of the University of Washington, creator of a treatment used worldwide for severely suicidal people — had a ready answer. It was the one she always used to cut the question short, whether a patient asked it hopefully, accusingly or knowingly, having glimpsed the macramé of faded burns, cuts and welts on Dr. Linehan’s arms:

“You mean, have I suffered?”

“No, Marsha,” the patient replied, in an encounter last spring. “I mean one of us. Like us. Because if you were, it would give all of us so much hope.”

“That did it,” said Dr. Linehan, 68, who told her story in public for the first time last week before an audience of friends, family and doctors at the Institute of Living, the Hartford clinic where she was first treated for extreme social withdrawal at age 17. “So many people have begged me to come forward, and I just thought — well, I have to do this. I owe it to them. I cannot die a coward.”

No one knows how many people with severe mental illness live what appear to be normal, successful lives, because such people are not in the habit of announcing themselves. They are too busy juggling responsibilities, paying the bills, studying, raising families — all while weathering gusts of dark emotions or delusions that would quickly overwhelm almost anyone else.

Now, an increasing number of them are risking exposure of their secret, saying that the time is right. The nation’s mental health system is a shambles, they say, criminalizing many patients and warehousing some of the most severe in nursing and group homes where they receive care from workers with minimal qualifications.

Moreover, the enduring stigma of mental illness teaches people with such a diagnosis to think of themselves as victims, snuffing out the one thing that can motivate them to find treatment: hope.

“There’s a tremendous need to implode the myths of mental illness, to put a face on it, to show people that a diagnosis does not have to lead to a painful and oblique life,” said Elyn R. Saks, a professor at the University of Southern California School of Law who chronicles her own struggles with schizophrenia in “The Center Cannot Hold: My Journey Through Madness.” “We who struggle with these disorders can lead full, happy, productive lives, if we have the right resources.”

These include medication (usually), therapy (often), a measure of good luck (always) — and, most of all, the inner strength to manage one’s demons, if not banish them. That strength can come from any number of places, these former patients say: love, forgiveness, faith in God, a lifelong friendship.

But Dr. Linehan’s case shows there is no recipe. She was driven by a mission to rescue people who are chronically suicidal, often as a result of borderline personality disorder, an enigmatic condition characterized in part by self-destructive urges.

“I honestly didn’t realize at the time that I was dealing with myself,” she said. “But I suppose it’s true that I developed a therapy that provides the things I needed for so many years and never got.”

‘I Was in Hell’

She learned the central tragedy of severe mental illness the hard way, banging her head against the wall of a locked room.

Marsha Linehan arrived at the Institute of Living on March 9, 1961, at age 17, and quickly became the sole occupant of the seclusion room on the unit known as Thompson Two, for the most severely ill patients. The staff saw no alternative: The girl attacked herself habitually, burning her wrists with cigarettes, slashing her arms, her legs, her midsection, using any sharp object she could get her hands on.

The seclusion room, a small cell with a bed, a chair and a tiny, barred window, had no such weapon. Yet her urge to die only deepened. So she did the only thing that made any sense to her at the time: banged her head against the wall and, later, the floor. Hard.

“My whole experience of these episodes was that someone else was doing it; it was like ‘I know this is coming, I’m out of control, somebody help me; where are you, God?’ ” she said. “I felt totally empty, like the Tin Man; I had no way to communicate what was going on, no way to understand it.”

Her childhood, in Tulsa, Okla., provided few clues. An excellent student from early on, a natural on the piano, she was the third of six children of an oilman and his wife, an outgoing woman who juggled child care with the Junior League and Tulsa social events.

People who knew the Linehans at that time remember that their precocious third child was often in trouble at home, and Dr. Linehan recalls feeling deeply inadequate compared with her attractive and accomplished siblings. But whatever currents of distress ran under the surface, no one took much notice until she was bedridden with headaches in her senior year of high school.

Her younger sister, Aline Haynes, said: “This was Tulsa in the 1960s, and I don’t think my parents had any idea what to do with Marsha. No one really knew what mental illness was.”

Soon, a local psychiatrist recommended a stay at the Institute of Living, to get to the bottom of the problem. There, doctors gave her a diagnosis of schizophrenia; dosed her with Thorazine, Librium and other powerful drugs, as well as hours of Freudian analysis; and strapped her down for electroshock treatments, 14 shocks the first time through and 16 the second, according to her medical records. Nothing changed, and soon enough the patient was back in seclusion on the locked ward.

“Everyone was terrified of ending up in there,” said Sebern Fisher, a fellow patient who became a close friend. But whatever her surroundings, Ms. Fisher added, “Marsha was capable of caring a great deal about another person; her passion was as deep as her loneliness.”

The door to the room where as a teenager Dr. Linehan was put in seclusion. The room has since been turned into a small office.

A discharge summary, dated May 31, 1963, noted that “during 26 months of hospitalization, Miss Linehan was, for a considerable part of this time, one of the most disturbed patients in the hospital.”

A verse the troubled girl wrote at the time reads:

They put me in a four-walled room

But left me really out

My soul was tossed somewhere askew

My limbs were tossed here about

Bang her head where she would, the tragedy remained: no one knew what was happening to her, and as a result medical care only made it worse. Any real treatment would have to be based not on some theory, she later concluded, but on facts: which precise emotion led to which thought led to the latest gruesome act. It would have to break that chain — and teach a new behavior.

“I was in hell,” she said. “And I made a vow: when I get out, I’m going to come back and get others out of here.”

 

Radical Acceptance

She sensed the power of another principle while praying in a small chapel in Chicago.

It was 1967, several years after she left the institute as a desperate 20-year-old whom doctors gave little chance of surviving outside the hospital. Survive she did, barely: there was at least one suicide attempt in Tulsa, when she first arrived home; and another episode after she moved to a Y.M.C.A. in Chicago to start over.

She was hospitalized again and emerged confused, lonely and more committed than ever to her Catholic faith. She moved into another Y, found a job as a clerk in an insurance company, started taking night classes at Loyola University — and prayed, often, at a chapel in the Cenacle Retreat Center.

“One night I was kneeling in there, looking up at the cross, and the whole place became gold — and suddenly I felt something coming toward me,” she said. “It was this shimmering experience, and I just ran back to my room and said, ‘I love myself.’ It was the first time I remember talking to myself in the first person. I felt transformed.”

The high lasted about a year, before the feelings of devastation returned in the wake of a romance that ended. But something was different. She could now weather her emotional storms without cutting or harming herself.

What had changed?

It took years of study in psychology — she earned a Ph.D. at Loyola in 1971 — before she found an answer. On the surface, it seemed obvious: She had accepted herself as she was. She had tried to kill herself so many times because the gulf between the person she wanted to be and the person she was left her desperate, hopeless, deeply homesick for a life she would never know. That gulf was real, and unbridgeable.

That basic idea — radical acceptance, she now calls it — became increasingly important as she began working with patients, first at a suicide clinic in Buffalo and later as a researcher. Yes, real change was possible. The emerging discipline of behaviorism taught that people could learn new behaviors — and that acting differently can in time alter underlying emotions from the top down.

But deeply suicidal people have tried to change a million times and failed. The only way to get through to them was to acknowledge that their behavior made sense: Thoughts of death were sweet release given what they were suffering.

“She was very creative with people. I saw that right away,” said Gerald C. Davison, who in 1972 admitted Dr. Linehan into a postdoctoral program in behavioral therapy at Stony Brook University. (He is now a psychologist at the University of Southern California.) “She could get people off center, challenge them with things they didn’t want to hear without making them feel put down.”

No therapist could promise a quick transformation or even sudden “insight,” much less a shimmering religious vision. But now Dr. Linehan was closing in on two seemingly opposed principles that could form the basis of a treatment: acceptance of life as it is, not as it is supposed to be; and the need to change, despite that reality and because of it. The only way to know for sure whether she had something more than a theory was to test it scientifically in the real world — and there was never any doubt where to start.

Getting Through the Day

“I decided to get supersuicidal people, the very worst cases, because I figured these are the most miserable people in the world — they think they’re evil, that they’re bad, bad, bad — and I understood that they weren’t,” she said. “I understood their suffering because I’d been there, in hell, with no idea how to get out.”

In particular she chose to treat people with a diagnosis that she would have given her young self: borderline personality disorder, a poorly understood condition characterized by neediness, outbursts and self-destructive urges, often leading to cutting or burning. In therapy, borderline patients can be terrors — manipulative, hostile, sometimes ominously mute, and notorious for storming out threatening suicide.

Dr. Linehan found that the tension of acceptance could at least keep people in the room: patients accept who they are, that they feel the mental squalls of rage, emptiness and anxiety far more intensely than most people do. In turn, the therapist accepts that given all this, cutting, burning and suicide attempts make some sense.

Finally, the therapist elicits a commitment from the patient to change his or her behavior, a verbal pledge in exchange for a chance to live: “Therapy does not work for people who are dead” is one way she puts it.

Yet even as she climbed the academic ladder, moving from the Catholic University of America to the University of Washington in 1977, she understood from her own experience that acceptance and change were hardly enough. During those first years in Seattle she sometimes felt suicidal while driving to work; even today, she can feel rushes of panic, most recently while driving through tunnels. She relied on therapists herself, off and on over the years, for support and guidance (she does not remember taking medication after leaving the institute).

Dr. Linehan’s own emerging approach to treatment — now called dialectical behavior therapy, or D.B.T. — would also have to include day-to-day skills. A commitment means very little, after all, if people do not have the tools to carry it out. She borrowed some of these from other behavioral therapies and added elements, like opposite action, in which patients act opposite to the way they feel when an emotion is inappropriate; and mindfulness meditation, a Zen technique in which people focus on their breath and observe their emotions come and go without acting on them. (Mindfulness is now a staple of many kinds of psychotherapy.)

In studies in the 1980s and ’90s, researchers at the University of Washington and elsewhere tracked the progress of hundreds of borderline patients at high risk of suicide who attended weekly dialectical therapy sessions. Compared with similar patients who got other experts’ treatments, those who learned Dr. Linehan’s approach made far fewer suicide attempts, landed in the hospital less often and were much more likely to stay in treatment. D.B.T. is now widely used for a variety of stubborn clients, including juvenile offenders, people with eating disorders and those with drug addictions.

“I think the reason D.B.T. has made such a splash is that it addresses something that couldn’t be treated before; people were just at a loss when it came to borderline,” said Lisa Onken, chief of the behavioral and integrative treatment branch of the National Institutes of Health. “But I think the reason it has resonated so much with community therapists has a lot to do with Marsha Linehan’s charisma, her ability to connect with clinical people as well as a scientific audience.”

Most remarkably, perhaps, Dr. Linehan has reached a place where she can stand up and tell her story, come what will. “I’m a very happy person now,” she said in an interview at her house near campus, where she lives with her adopted daughter, Geraldine, and Geraldine’s husband, Nate. “I still have ups and downs, of course, but I think no more than anyone else.”

After her coming-out speech last week, she visited the seclusion room, which has since been converted to a small office. “Well, look at that, they changed the windows,” she said, holding her palms up. “There’s so much more light.”

 

NY TIMES

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A Schizophrenic, a Slain Worker, Troubling Questions

Stephanie Moulton's fiancé got tattooed in her memory after she was killed at the group home where she worked

 

BOSTON MA,

Last November, Yvette Chappell found herself increasingly anxious that her 27-year-old son, Deshawn James Chappell, was spiraling downward into deep psychosis. He was exhibiting intense paranoia and calling late at night to complain about deafening voices in his head.

For over a year, Mr. Chappell, a schizophrenic with a violent criminal record, had seemed relatively stable in a state-financed group home in Charlestown. But after a fight with another resident, Mr. Chappell was shuttled from home to home, and his mother believed that he had fallen off his medication along the way.

Ms. Chappell said she had tried to communicate this concern to his caretakers, but it was not until mid-January that she found somebody who listened.

The woman introduced herself as Stephanie and said she would be Mr. Chappell’s counselor at his new group home in Revere. She confirmed that Mr. Chappell had stopped getting his antipsychotic injections but made his mother a promise: “She said: ‘Don’t worry. I’m going to get Deshawn back on track.’

“I thought everything was going to be O.K. because he had somebody who cared,” Ms. Chappell said, her voice breaking.

The Victim Stephanie Moulton was killed at a group home in January

Two days after that conversation, Stephanie Moulton, a petite, street-smart 25-year-old, was dead, and Mr. Chappell was accused of murdering her. They had been alone at the Revere home, where, her family said, Ms. Moulton generally worked a solo shift. Mr. Chappell beat her, stabbed her repeatedly and then dumped her partially nude body in a church parking lot, prosecutors said.

The killing on Jan. 20 stunned the mental health care community in Massachusetts. The “shattering event,” as one former state mental health official called it, occurred days before Gov. Deval Patrick, a Democrat, released his proposed budget, which would slash mental health spending for the third year in a row. And it raised the timely but uncomfortable question of whether such continuous belt-tightening had played a role in Ms. Moulton’s death.

THE DEFENDANT    Deshawn James Chappell before his arraignment in late March

Many people wondered aloud whether the system had failed both the suspect and the victim. How had Ms. Moulton ended up alone in a home with a psychotic man who had a history of violence and was off his medication? How had Mr. Chappell been allowed to deteriorate without setting off alarms? Should he have still been living in a group home, or did he need the tighter supervision of a hospital?

“People are reeling right now,” Dr. Kenneth Duckworth, a former medical director for the State Department of Mental Health, said after the killing. “Will this case be the canary in the coal mine? Will it signal that we’ve gone too far in reducing client-staff ratios, in closing hospitals, in pushing independence for people who may still be too sick?”

Massachusetts, which compared with other states faces a relatively modest budget shortfall of $1.5 billion, is hardly alone in cutting money for mental health care. State mental health departments, serving vulnerable populations with little political clout, almost always get disproportionately squeezed during tough times. During the current fiscal crisis, many states have sharply reduced both inpatient and community-based mental health care.

 

In the cuts being debated now, Mr. Patrick proposes to eliminate roughly a quarter of the 626 long-term care beds left in the state’s psychiatric hospital system. This unnerves many mental health professionals. Not only do they believe that there are already far too few beds for new cases — “It’s harder to get into a state hospital than into Harvard Medical School,” Dr. Duckworth said — but they also worry about discharging long-institutionalized patients into communities whose resources are clearly strained.

“It’s sort of a cross your fingers and pray approach,” said Scott Bezzini, a mental health outreach worker who is on leave to work for his union.

Hospital, corrections and municipal officials have long complained about people with mental illness crowding emergency rooms, homeless shelters and prisons in Massachusetts, saying mental health budget cuts transfer obligations to them. A quarter of the state’s inmates now need mental health treatment, compared with 15 percent in 1998, Department of Correction data show.

The first time Mr. Chappell secured a state hospital bed — and the treatment that comes with it — was when he ended up behind bars. After a conviction for assault and battery in 2007, he was sent briefly to a prison psychiatric hospital, Bridgewater State. That is where he is now being detained once again.

The Arraignment

On the day in late March when Mr. Chappell was arraigned on first-degree murder charges, Stephanie Moulton’s relatives filed grimly into a high-ceilinged courtroom in Boston.

They were unprepared, they said later, for some of the details that would be revealed: the “multiple, deep penetrating stab wounds to her neck,” the “blunt impact injuries to her head, torso and upper extremities,” the pants and underwear “dangling from one ankle.” The victim’s fiancé, Ryan Papazian, face hidden beneath a Bruins cap, bounced his legs as the facts of the case were read.

Seated beside his court-appointed lawyer, Jeffrey T. Karp, Mr. Chappell appeared dazed. He looked backward myopically, and his mother put her index finger to her lips and emphatically mouthed “Shh.”

A court forensic psychologist testified that Mr. Chappell, despite two months of treatment at Bridgewater, was “still very, very psychotic.”

The psychologist, Jeffrey Miner, cited non sequiturs that Mr. Chappell had spouted in a private session. He said that Mr. Chappell, a native of nearby Chelsea, told him variously that he hailed from Texas and rooted for the Washington Redskins and that he wanted “a lawyer from U.C.L.A. with a 3.5 grade-point average.” When Dr. Miner asked a follow-up question, Mr. Chappell responded, “Masseuse.”

“My sense is he is no way competent to stand trial,” Dr. Miner told the judge, recommending that he be returned to Bridgewater to see if his competency could be established through further treatment. The judge agreed. A trial date of April 26, 2012, was set.

Ms. Moulton’s relatives sat frozen, mouths agape, on the edge of their seats. Suddenly, her fiancé sprang to his feet, whisked off his cap and hurled it at the defendant. “Clear the court, clear the court,” the court officers ordered, tackling Mr. Papazian as other relatives rushed forward.

Kimberly Flynn, Ms. Moulton’s mother, shouted: “He kills my daughter, and you’re roughing up my family? He sits there and pretends he’s crazy, and you come down on us?”

Mr. Chappell was hustled away, and his mother fled, shaking. “My heart goes out to them because I am also in the same shoes,” Ms. Chappell said later, explaining that her brother had recently been murdered and that she alternately visited courthouses as the mother of a murder suspect and the sister of a murder victim. “But that was not cool. There’s something wrong with my child.”

A Desire to Help, Then Fear

A few weeks later, Ms. Flynn, 46, wearing blue scrubs after her shift as a visiting nurse, sat calmly in her kitchen in a public housing unit outside Boston. She showed off the centerpiece she had designed for a memorial fund-raiser at the Peabody Elks Lodge — a vase filled with marbles and her daughter’s favorite knickknacks: a frog, a butterfly, mini flip-flops.

Ms. Flynn said she hoped to raise enough money to bury Ms. Moulton’s ashes. “I got to put my daughter to rest,” she said. “She’s still upstairs in an urn on her bureau.”

At the kitchen table, Ms. Moulton’s father, a welder, and her teenage brothers wore new tattoos — “Stephanie” written atop a cross adorned with a rose.

Ms. Moulton, the first in her family to graduate from college, got an associate’s degree in mental health and a bachelor’s in social work. She was drawn to the field because she was close to an uncle with schizophrenia and had observed intimately the effects of the illness on his family, said her brother Anthonee Flynn, 18.

“Personally, I told her she was crazy,” he said of her career choice, “but she wanted to help.”

After graduating, Ms. Moulton managed a Victoria’s Secret store for a year before landing an entry-level position with the North Suffolk Mental Health Association, which, like other agencies under contract with the state, offers starting salaries of $12 to $14 an hour.

“With the resources we have, with the dollars in the system, we can’t pay the kind of wages people should get for this work,” said Jackie K. Moore, the chief executive of North Suffolk, one of the state’s largest behavioral health care providers, with an annual budget of $43 million.

Over the last half-century, as Massachusetts eliminated over 20,000 long-term psychiatric hospital beds and many of the public, unionized jobs that went with them, the state developed a network of private agencies, mostly nonprofit, to provide care for severe mental illness.

The community system never had enough money, many experts say, but recent budget cuts, combined with Medicaid reimbursement rates that did not keep pace with rising costs, have seriously weakened it.

“The outpatient treatment system in Massachusetts is dying on the vine,” said Vicker V. DiGravio III, the chief executive of the Association for Behavioral Healthcare, which represents providers in the state.

Providers have trouble finding psychiatrists and other clinicians who are willing to work in the community; they depend on recent social work graduates, who usually move on quickly to better-paying jobs at hospitals or in private practice. They also have difficulty recruiting and retaining quality workers for group homes, and many hired do not have even have the college degree that Ms. Moulton possessed.

“The end result,” Mr. DiGravio said, “is a system where the folks with the least professional experience are serving the clients with the most intensive needs — because the Department of Mental Health serves only those people with the most severe mental illness.”

At North Suffolk, workers in group homes get at least a week’s training, as Ms. Moulton most likely did before starting her job at a residence in Chelsea.

“People go through an orientation,” Ms. Moore said. “They learn about mental illness. They learn ways to de-escalate a situation.”

Initially, Ms. Moulton loved her new job, where she supervised residents, accompanied them to appointments, distributed medication and cooked, her mother said. “Stephanie was like me,” she said. “We have the patience of saints when it comes to patients.”

Then, one Friday last fall, something happened. The residents were receiving small cash allowances, Ms. Flynn said, and one, believing he was owed more than he got, “flipped out.” He screamed, tossed furniture, threw objects. Ms. Moulton, 5-foot-1 and about 100 pounds, locked herself in an office and called for help.

Afterward, she grew frightened.

“She had to take anxiety pills,” her brother said, “and she started carrying around a knife.”

“A knife?” her mother said, looking alarmed. “She did?”

“She didn’t have it on her the day that stuff happened,” he said, referring to her stabbing death. “I found it in her room.”

Ms. Moulton began making plans to pursue a nursing degree. She also asked North Suffolk for a transfer and started working a shift from 3 to 11 p.m. at the home in Revere. Her family said she always worked alone at the home, which usually had seven residents, whom she described as easy and placid.

“She said they were all old people, in their 50s and stuff, so there was nothing to worry about,” Ms. Flynn said. “When this guy was sent in there, she must not have known what she was dealing with.”

A Rapid Descent

Tucked away in a recessed corner of the basement cafeteria of Massachusetts General Hospital, Mr. Chappell’s mother kissed an old picture of her son dressed in a white tuxedo.

“He took a girl with a prosthetic leg and arm to her senior prom because nobody else would,” said Ms. Chappell, an operations associate in the hospital’s gastroenterology department. “That was the kind of stuff he’d do before he changed.”

Ms. Chappell, 44, and her husband, a carpenter, raised five children in Chelsea. The second oldest, Deshawn, a stocky 5-foot-7, was a running back on his high school football team and went to work as a deliveryman after graduation. He had been an outgoing, churchgoing boy, and his mother thought he would grow up to be a minister.

Ms. Chappell said she first grew concerned when her son, a snappy dresser, began neglecting his appearance and wearing “his pants hanging all the way down his behind.” But that was a style. It was when he stopped talking about God and started talking about the Devil that her worry deepened.

“He would say the Devil was telling him to do things,” she said. “He would talk about curses and hexes and a lot of things that didn’t make sense.”

Symptoms of schizophrenia usually manifest in men during late adolescence and early adulthood. Ms. Chappell saw in her son what she called “familiar patterns” — her mother suffered from schizophrenia, too, she said.

Ms. Chappell said she urged her son to seek help but had little control over his life. He moved out of her home and, as his condition deteriorated, started getting in trouble with the law.

The arrests began in the summer of 2003 when Mr. Chappell, then 19, was charged with armed robbery and assault. The victim was a homeless man with $96 in his pocket. Mr. Chappell accosted the man twice, slashing his forehead the first time and then punching him in the eye, causing an injury that required surgery, according to court records. The charges were dismissed.

Mr. Chappell’s record also includes drug and alcohol charges; he was apparently drinking and smoking marijuana while his schizophrenia was emerging, which can be a combustible mix.

By the time he turned 21, he was in such agony that he asked for help, his mother said. He told her that the voices in his head prevented him from sleeping and that he was showering constantly because his skin was crawling. He said he felt so angry that he feared he would hurt himself or somebody else, and he asked her to take him to her hospital, she said.

Mr. Chappell was admitted to Massachusetts General for a couple of weeks. That is when schizophrenia was diagnosed and he was prescribed antipsychotic medication, his mother said. Over the next couple of years, though, he did not take his medication consistently because the side effects bothered him, she said.

He was hospitalized in acute-care hospitals at least four more times, including once in a center known for substance abuse treatment. During that time, he was also arrested several more times on assault charges, which were ultimately dismissed.

Because Mr. Chappell’s medical records are private, it cannot be determined if acute-care hospitals tried to discharge him to a state hospital for continuing care but, as sometimes happens, could not find a bed available.

“This guy, with his history, certainly would have spent time in a state hospital 20 years ago,” said Dr. William Fisher, a psychiatry professor at the University of Massachusetts Medical School.

A Focus on Recovery

Deinstitutionalization was the result of a struggle to end protracted and unnecessary confinement. It was also a way for states to offload considerable expense to the federal government.

Care in “institutions for mental disease” has never been covered by Medicaid; community care is. Indeed, in the view of experts on public psychiatry like Dr. Jeffrey Geller of the University of Massachusetts Medical School, cost-shifting has been “the major driving force” behind deinstitutionalization, “with the philosophy a tag-on.”

Community care, if done right, is nonetheless widely considered the most humane and effective way to treat people with serious mental illness.

But many in the field worry that deinstitutionalization has gone too far, stripping states of the minimum number of long-term psychiatric beds needed to accommodate people during acute stages of illness, as well as those with high-risk behaviors that make discharge dangerous. Massachusetts will have 466 such beds if proposed cuts are approved.

Today only 3 percent of the Mental Health Department’s clients live in state hospitals. For those in the community, the department has shifted in recent years from a model of care that sees serious mental illness as a long-term disability to a “recovery” model, which seeks to move clients into increasingly less restrictive, less supervised and less costly living situations.

“It’s all about getting people discharged as opposed to getting them treatment,” said Jill Homer, a state-employed case manager for three decades, who nonetheless feels that the system has “fumbled through” its downsizing fairly well.

Dr. Marie H. Hobart, medical director of Community Healthlink in Worcester, said she worried that the new approach “pretends” serious mental illness is linear, that people who improve will never suffer setbacks. She said that seriously ill clients were being allowed to leave the care of the Department of Mental Health, with some ending up homeless or in jail.

“In the past, D.M.H. would recognize that this is a person with schizophrenia, a condition that is ongoing and not something that can be cured,” she said.

Jennifer Ives, 37, a client of the department, said she appreciated the new focus on recovery. “It’s saying you’re not going to be like this forever,” said Ms. Ives, who has borderline personality disorder. But the recent loss of her case manager of eight years has made her feel isolated and anxious about “slipping backwards.”

“I was highly upset when she told me she had to terminate my case,” Ms. Ives said. “She helped me put out fires when they were just a little smoke. She was my mediator with the system, and there are real flaws with the system. Nobody knows what the other hand is doing. Nobody ever has time for you.”

One mother of a grown man with schizoaffective disorder said her son’s condition, relatively stable for 15 years, declined when the department started pushing him to become more independent. “We started hearing ‘He can take his medication on his own,’ ” said the mother, who asked that her name be withheld to respect her son’s privacy.

“He lost his therapist,” she said. “He lost his case manager. The professional level of the workers he encountered was lower. And our son was not able to take care of himself. He was not eating properly, he started playing around with his medications, and he just became very, very symptomatic. In the end, we got him checked into a private psychiatric hospital. It was his first hospitalization in 15 years.”

Within the System

For young adults with new psychotic disorders like Mr. Chappell, becoming a client of the Department of Mental Health is difficult. “You have to have had a lot of trouble to get into the system,” Dr. Hobart said.

Mr. Chappell finally made it in after his fifth arrest on assault charges resulted in a conviction.

That arrest occurred in November 2006 after Mr. Chappell’s stepfather, who had raised him and occasionally hired him to work construction, dismissed him from a job. Mr. Chappell, using “an unknown hard object,” responded by fracturing three bones in his stepfather’s left eye socket, a police report said. When officers arrived, the stepfather was “holding his head with a cloth and had blood running from his mouth.”

In 2007, Mr. Chappell, sentenced to a year in jail but required to serve only three months, ended up at the prison psychiatric hospital. When his mother visited him there, she said, she was heartened to see the effects of an enforced medication regimen. “This was the son I raised,” she said. “He talked about going back to school and getting a college degree.”

After his release, Mr. Chappell spent nearly a year living with his grandmother before he got off a waiting list and into a group home in Charlestown. That living situation appeared to stabilize him, his mother said, although she thinks he mostly stayed in his room and did not participate in day programs. He got antipsychotic injections every other week from a nurse at a clinic until he apparently stopped going.

Ms. Moore, the chief executive of North Suffolk, would not discuss Mr. Chappell’s case. Asked what her employees did if residents became noncompliant with their medication, she said: “I don’t like to use the word ‘compliant.’ That implies you can force people to take medication, which you can’t.” Still, she said, “Our staff is trained to observe and document, to note and report any changes, any symptomology. We would not ignore it.”

When Mr. Chappell went home for Thanksgiving, his behavior was alarming. “He was talking intensely about people watching him,” his mother said. “He felt too uneasy to leave the house. When Shawn was on his medicine, you could tell. He was quiet. He was not agitated like he was then.”

After that, Ms. Chappell called the home in Charlestown one day and learned that her son had been transferred after fighting, she said. She tracked him to a temporary residence in Chelsea. She called there repeatedly, but nobody returned her calls.

Her son, she said, “felt like they weren’t helping him anymore. He felt like they were bouncing him all around.” He declined to join the family for Christmas because he did not have gifts. He began phoning relatives and “making delusional statements,” said Mr. Karp, his lawyer. “I uncovered many witnesses who describe his deterioration as obvious.”

Over all, the risk of violence from people with mental disorders is considered low. But studies have shown that it can be elevated by various factors apparent in Mr. Chappell’s profile — delusions and hallucinations, a lack of treatment or failure to take medication, abuse of alcohol or drugs. The strongest predictor of violence by a mentally ill person is believed to be past violence.

In early January, Mr. Chappell was transferred to the Revere home. Ms. Moulton was not the only one there who realized he was not taking his medication, Mr. Karp said. But it is unclear what she or anybody else knew about Mr. Chappell’s medical and criminal history. Many providers, doctors and workers say that collaboration on cases is rare in an increasingly fragmented system with fewer case managers.

After Ms. Moulton’s killing, a local newspaper headline said, “Group home blind to man’s criminal past.” But Ms. Moore said “an inference was made” that North Suffolk did not have criminal offender record information on Mr. Chappell because it does not run criminal background checks on all residents. She declined to elaborate.

That Ms. Moulton was left alone in the home with a resident was apparently not unusual. Under new contracts with providers, the state government does not specify staffing levels, and providers are free to allocate employees as they see fit while stretching dollars to cover their programs.

“If providers want to leave a house unstaffed or single-staffed, they can — and they do,” said Toby Fisher, a senior field policy specialist for the Service Employees International Union, which represents many of the state’s mental health workers.

Ms. Moore said: “There are times when there’s only one person on a shift. We have reduced the staffing at some places where we feel the clients are independent enough that they don’t need staff.”

That Day in January

On Jan. 20, Anthonee Flynn heard a few staccato raps on the door. “Cops were standing there, asking where my mom was,” he said. Located at work by her fiancé, Ms. Flynn was told there was an emergency. She asked if Anthonee was all right; he was. “I said, ‘Stephanie’s dead, isn’t she?’ ” She imagined a car accident. A state trooper arrived to escort her to a police station.

“He said Stephanie was murdered, that they knew who the man was and that he was one of the patients,” Ms. Flynn said. “I was screaming and screaming and screaming.”

Prosecutors say that shortly after Ms. Moulton arrived to work a day shift, the other residents left to attend programs. She had been scheduled to accompany Mr. Chappell to a counseling session. Another employee stopped by to pick them up and discovered blood in the driveway where Ms. Moulton usually parked her Chrysler PT Cruiser. The car was missing.

Mr. Chappell killed Ms. Moulton inside the residence, prosecutors say.

“The hardest part is not being able to know what transpired between those two,” Ms. Flynn said. “I keep thinking, was she yelling for me?”

After depositing her body in a parking lot, Mr. Chappell abandoned the car and stole clothes to replace his bloody ones, prosecutors say. He then called his grandmother.

His mother, at Massachusetts General, was getting calls from North Suffolk looking for him. “I didn’t know what was going on,” she said. “Then I got a phone call stating that somebody saw my son on the news. Everything else is a blur.”

Learning that her son was heading toward her mother’s house in Roxbury, Ms. Chappell started driving there herself. She also alerted the police.

“Yes, I turned my son in,” she said. “I was nervous about how it might go down if I didn’t. I begged the police not to hurt him. When I got to my mom’s, I just hugged my son and I told him I loved him. He looked scared. Then they took him away. ”

Looking to the Future

After Ms. Moulton’s funeral drew hundreds of mourners, the mental health commissioner convened a task force to review the system’s safety and training practices.

At the first of a series of statewide hearings, in a cavernous college auditorium in Fitchburg, several panel members expressed discomfort with their mission.

“The overwhelming majority of consumers are not more dangerous than the general population, although there is a very small group that does cause concern,” said Dr. Kenneth Appelbaum, a co-chairman of the task force. “How to go about addressing safety concerns without adding stigma is a challenge.”

Rising to address the panel, Laurie Martinelli, the executive director of the National Alliance on Mental Illness in Massachusetts, said the issue raised by Ms. Moulton’s case — and by the subsequent killing of a homeless shelter employee — was not whether people with mental illness were violent.

“The elephant in the room is the state mental health budget,” she said. “Did the murders have something to do with funding cutbacks?”

The “historical budget levels” posted on the department’s Web site show a nearly 10 percent decline in appropriations for mental health from 2009 through 2011. Additional information requested for this article — on midyear cuts, budget supplements and trust fund spending — indicates that the money available to the department probably declined somewhat less, by about 6 percent.

Joellen Stone, a client of the department trained to help others with mental illness, told the panel that the people she counsels are living in “utter poverty — in apartments with bed bugs and rats and drug dealers in the hall.”

“They’re closing hospitals, and people are ending up in nursing homes or substandard housing. It just saddens me,” she said. “If we don’t get funding, we’re either on the street, in prison, dead or rather be dead. And when people are disempowered, that’s when they’re likely to become violent.”

Throughout the spring, the legislature, especially the Senate, showed resistance to the governor’s proposed mental health cuts. Budget reconciliation talks are taking place this month.

In mid-May, Mr. Chappell returned to court, standing taller and looking less puzzled. Judge Carol S. Ball said prison hospital officials now found him competent to assist in his own defense but acknowledged that “there’s a certain amount of in-and-out-ness.” Scrutinizing him from the rear of the courtroom, his mother noticed that he was mumbling to himself.

On the courthouse steps afterward, Ms. Flynn turned toward a warming sun and said she had finally buried her daughter the previous week. Exhausted by her loss, she had taken a leave from her job but could not stop thinking about what had happened in Revere.

She filed a wrongful death suit against North Suffolk and was planning to testify at the Statehouse about worker safety. She wanted answers, she said, and justice.

“Stephanie should be here now, planning her wedding and rolling her eyes at me like she always does,” Ms. Flynn said. “It was just totally unnecessary for her to get killed and murdered on the job when all she was trying to do was help people.”

 

NY Times

Hushing the intruders in her brain

 

   January Schofield visits with a cat at the county animal shelter in Castaic. "Animals are the only thing that really seems to make her completely in the moment," says her father, Michael Schofield. Jani, 7 suffers from child-onset schizophrenia.

It was a little more than a year ago that January Schofield, at age 6, began to drift from reality. Suicidal, violent and plagued by hallucinations of rats and cats who conversed and played with her, she began the first of seven psychiatric hospitalizations.

As of today, Jani, 7, has been out of the hospital for 56 days, the longest period in 15 months. Together with her parents, Michael and Susan, and brother, Bodhi, 2, Jani is living a fragile existence -- haunted by delusions that sometimes tell her to hurt herself or others, even the people she loves.

But despite the family's dire financial and emotional circumstances, that existence is not completely devoid of hope.

The child's story was first described June 29 in the Los Angeles Times article "Jani is at the mercy of her mind." At the time, the family was struggling with the new diagnosis of child-onset schizophrenia and searching for a way to care for their child on a long-term basis. Shortly after the story was published, Jani was hospitalized for the fifth time.

She's now living at home and attends school an hour each day for one-on-one tutoring. Her father is no longer employed as an English instructor at Cal State Northridge; he'll soon receive a small advance to write a book about his daughter's illness.

For now, the family scrapes by on his unemployment, forced by Jani's illness to rent two small apartments, rather than one for the entire family. There, in a complex in Santa Clarita, one parent stays with Jani and the other with Bodhi. The arrangement is the only way to keep Jani at home and protect Bodhi from her unpredictable behavior.

"The two apartments have worked," said Michael, 33. "Bodhi isn't growing up scared of her. Our biggest problems are the normal financial problems that come when you have a mentally ill child such that you can't work."

Jani's prognosis is unclear, but she shows some signs of progress. She takes a combination of the antipsychotic drugs Clozaril and Thorazine and the mood stabilizer lithium. She is less violent, less depressed and behaves well when engaged in something she enjoys, such as visits to the animal shelter or pet store.

Activity tends to hush the intruders in Jani's brain. Because the stimulation needs to be constant, the family leaves the small apartments early each day in a search for free diversions.

Sometimes, when they run out of things to do, a panicked look comes into her eyes. "What are we going to do next?" she asks pleadingly.

Like a little bird, she flits from perch to perch, flapping her hands -- a nervous tic -- and chirping profound thoughts followed by nonsensical ones.Eternal optimist'

"Jani is a very whimsical child," said Dr. Linda Woodall, a child and adolescent psychiatrist in Glendale who has been treating Jani for almost two years. "There is this huge world in her head. Some of it is tormenting and some of it is delightful. And everything has a name. There is such a charming quality to that behind the illness."

Woodall calls her time with Jani a learning experience for which there is no manual.

"It has been really difficult to find something to treat her symptoms," she said. "But I'm an eternal optimist. I do think there will be the right medication for Jani some day."

Jani still has frequent hallucinations, although her brain has altered the shape of those phantoms. She doesn't see rats and cats as much any more and now tends to be haunted by numbers -- strange, twisted, towering figures that move and talk to her. She dislikes 13. He opens his mouth wide and frightens her. Five too is dark. Five bites her.

"She will tell me when they're here," said Susan, 40. "She'll say, 'Wednesday's here.' (Wednesday is a rat.) We talked last night about what schizophrenia is. I said it's the hallucinations. This morning, we were talking about getting dressed. She told me her hallucinations always wear the same clothes."

Jani sees Woodall one hour a week and sees a psychologist three times a week. But the Schofields have relinquished hopes of receiving any services from the Los Angeles County Department of Mental Health. In October, they received a letter from the department offering to place Jani in the Devereaux Foundation treatment center for children and adolescents with behavioral health problems in Viera, Fla. The family rejected the plan because it would make regular visits impossible or force relocation from Los Angeles. The county had previously offered to place her in a residential facility in Texas.

"We're committed to keeping her with us," Michael said. "Not just because the only residential offer is still out of state, but because she wouldn't get love there. And that's important."

Department of Mental Health officials declined to comment on the case.

The Schofields are angry, but resigned, that so few resources exist to help a psychotic child. No residential center in California will take Jani because of her extreme behavior. She was also rejected at two private outpatient day schools for mentally ill children.Any small problem -- an empty gas tank, Bodhi's flu -- tries the parents' already frayed resilience. The few relatives to whom they are close live too far away to be of much help, and others have been alienated by Jani's illness. Both Michael and Susan take antidepressants and undergo counseling for depression. Many months ago, Michael made a half-hearted suicide attempt by taking an overdose of antidepressants.

"No one really understands what we're going through," Susan said. "That's half the battle."

Susan's recent 40th birthday was spent at home with Bodhi, who was sick and fussy, while Michael spent six hours in UCLA's emergency room with Jani after she told them that the number 80 was telling her to jump from a building. Michael was able to take Jani home after a psychiatrist assessed her and said she was not suicidal.

"Six months ago I was a professor and now I'm pretty much on welfare," Michael said. "I think Susan and I are going through a period of feeling sorry for ourselves."

Help from others

In their search for assistance, the Schofields have encountered other families similarly floundering because of the lack of appropriate mental health services.

They have created an online network for parents of mentally ill children to communicate with each other and provide support.

Others have not been blind to the family's plight. The Times story led to an outpouring of financial donations and offers of help.

A San Diego elementary school teacher, Marla Rosenthal, and her friend Karen Cohen, who lives in Sherman Oaks, are planning Jani's Giant Garage Sale for Jan. 17, at Congregation Beth Shalom of the Santa Clarita Valley.

"These are the kinds of parents who are going more than the extra mile and doing everything they can and are still running into so many roadblocks," Rosenthal said. "I felt like I had to do something."

The family's greatest asset at the moment is a group of psychology students at Glendale College who spend a few hours each day at the apartment keeping Jani entertained. The volunteer arrangement was the idea of Daphne Dionisio, a psychology professor at the college.

"After I read the article in The Times, two things resonated," Dionisio said. "Number one, Jani is stable when her parents engage her in constant mental stimulation. And, two, that constant engagement puts an enormous stress on her family. I thought I could help them."

Her students have taken to Jani with joy.

"It's deeply meaningful for them," Dionisio said. "These are students who really want to help."

Five students have worked with Jani this fall and 14 will take turns spending time with her each day in 2010.

This small web of kindness helps keep the family afloat and kindles hope for a better future.

"Over this year, we've really started to learn how to live with this and give Jani a life, even in the face of her illness," Michael said.

"We've come to acceptance," Susan added. "At the beginning of the year we really didn't know the full scope of everything. We know now she's a rare case."

But they have no concrete plan for how to keep their fragile family intact.

The goal for 2010?

"It's really day by day," Michael said.

LA TIMES

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