He is one of the lucky ones - but more and more people with schizophrenia are living good lives. Read the whole story below - it's worth the few minutes to do so.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.
Learning to Cope With a Mind’s Taunting Voices
Living With Voices: 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.
By BENEDICT CAREY
Published: August 6, 2011
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’
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 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?”
Mr. Holt and his wife, Patsy, who has been one of his main resources in his struggle with mental illness.
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.”
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