Tuesday, 25 September 2012

Finding Purpose After Living With Delusion

Finding Purpose After Living With Delusion

Damon Winter/The New York Times
Meaning in Madness: Milton Greek, who has been diagnosed with schizophrenia, believes that decoding the messages in delusions can help some people recover.
Meaning in Madness: Milton Greek, who has been diagnosed with schizophrenia, believes that decoding the messages in delusions can help some people recover.
ATHENS, Ohio — 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 time, because people with lived experience are beginning to collaborate in large numbers,” said 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.

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