Mysteries of the Mind: Pittsburgh man's journey into schizophrenia
Jonah Fite, who has an aquarium at his South Side house, shops at the Waterfront for new fish. His mother, Cindy McHolme, accompanies him, as she sometimes does on trips to stores, doctors' offices and supermarkets.
Jonah Fite, 35, has had schizophrenia for 15 years. He lives on his own in a South Side house, takes medications to control his voices and delusions, and feels comfortable discussing his disease because "I'm able to explain this condition instead of keeping it inside me and freaking out."
Jonah wrestles with skis in his house, on a day when he was convinced he would be going on a ski trip with a Post-Gazette photographer, even though there were no such plans. The skis got stuck in his window blinds, and he pried them out with the help of a sword he keeps at his home. He is taking a new antipsychotic medication, Latuda, to combat those kinds of delusions.
Jonah takes several medications each day for his schizophrenia, depression, pain and the side effect of weight gain. The lansoprazole shown in the foreground is an antacid he takes because he has pancreatitis.
Share with others:
About this series
Every day, we are reminded of a mental disorder that affects our society.
Yet another mass shooting rips lives apart, and often the gunman has a history of mental illness. News reports document another athlete whose life has crumbled after repeated blows to the head.
A new statistical study raises the odds of a child being born with autism, or television commercials show depressed people barely able to get out of bed. And each month, there seems to be a new type of phobia to report.
They all have one thing in common: deep-rooted defects in the function of the brain that scientists are just beginning to understand.
Over the next year, the Pittsburgh Post-Gazette will explore five of these brain disorders: schizophrenia; chronic traumatic encephalopathy -- a form of brain deterioration affecting athletes and soldiers; autism; depression and phobias.
In today's opening of "Mysteries of the Mind," we focus on perhaps the most stigmatizing illness of all -- schizophrenia -- which involves hallucinations, delusions and cognitive deterioration. It can mean a lifetime of dependency for patients -- and in rare cases, it leads to frightening outbursts of violence.
Jonah Fite can still remember the day the "switch got flipped" in his brain.
It was 1998, and he was a 20-year-old sophomore at Carnegie Mellon University. He had spent three straight days staying up and partying, taking several doses of LSD. He walked out of his fraternity house, got on a city bus and told the driver he didn't need to pay because he was "on a mission" and needed to "see the man."
It marked the beginning of his journey into schizophrenia. Jonah, now a 35-year-old South Side resident who takes a cocktail of medications, doesn't expect to ever find his way back through that portal.
If the bus driver that day wasn't already wary enough, he was after Jonah stood up to address his fellow passengers. "We were in the midst of the Monica Lewinsky-Bill Clinton scandal, and I stood up and said 'Hey bus, what do you think of the Monica Lewinsky scandal?' because Mike Lewinsky [Ms. Lewinsky's brother] was in my fraternity. And everyone on the bus went, 'Shut up. Sit down, idiot.' And the bus driver got on the radio and the cops came on the bus."
By happenstance, there was also a psychiatrist on the bus, and he knew immediately what the problem was. "The doctor was from Western Psych," Jonah recalled, "and he said, 'I'll take care of this,' and I said, 'You'll take care of this? 'Cause I'm on a mission.'
"He said to me, 'Oh you need to see the man, right?' and "I said 'Yeah I need to see the man' -- which in my mind was just like this guy who could solve all my problems and my issues of life -- and he said, 'I can take you to the man.' "
He escorted Jonah to Western Psychiatric Institute and Clinic, which is where his family eventually found him, and where he remained for several days, nearly catatonic, sitting in his underwear, writing messages with his food on the walls of his room.
Two days before he got on that bus, Jonah remembers, "I was talking and having fun. The only way I can explain it is to say the switch got flipped. I had taken LSD in the past and nothing had happened. But one day I might have crossed a line somewhere, and it really drove me to insanity, and, well, I just never went back to sanity."
Hallmarks of schizophrenia
Jonah is one of an estimated 3.1 million people in the United States believed to have schizophrenia -- roughly 1 percent of the population. While the proportion is small, that means that in Allegheny County alone, there could be more than 12,000 people with the disease.
MYSTERIES OF THE MIND: SCHIZOPHRENIA
First in a three-part series.
Schizophrenia involves hallucinations, delusions and cognitive deterioration. It can mean a lifetime of dependency for patients -- and in rare cases, it leads to frightening outbursts of violence.
Like most people with schizophrenia -- but unlike those who often land on the front pages of newspapers -- Jonah has no history of serious violence, except for a few scrapes that usually occurred after he said something inappropriate to someone. He also is typical in having three hallmark symptoms: delusions, which are often bizarre ideas about what is happening in the world; auditory hallucinations; and cognitive difficulties, especially with his short-term memory.
With the help of his mother and stepfather, Cindy and Norman McHolme of Elizabeth Township, he lives on his own in a refurbished home on the South Side, supported by Social Security disability checks.
One day in December, he lined up his pill bottles on the kitchen counter. First was his brand new antipsychotic medication, Latuda, which helps control his delusions and inner voices. Next to it was the anti-epilepsy drug topiramate, which helps fight weight gain, a common side effect of antipsychotics; alizapride, which relieves the stomach irritation that comes from his chronic pancreatitis; tramadol, a painkiller; and sertraline, better known as Zoloft, a mood stabilizer to combat depression. Together, the medications maintain his physical health and give him a lifeline to the world of the sane.
The intensity of Jonah's delusions can vary, depending on how his medication is working. Much of the time, Jonah is indistinguishable from everyone else. At other moments, his ideas are noticeably strange.
When his antipsychotics are effective, he can usually tell that his delusions are not real, even if it takes him a few minutes. Other times, that's harder for him -- and he knows it can be hard on the people around him.
"I might say, 'Hey I think the aliens just attacked. Did you hear the sonar?' and they'll say, 'No, you're insane,' and I say 'I know I'm insane, but that's what I just thought,' but a lot of the time people can't take that."
On one recent winter day, he told a Pittsburgh Post-Gazette photographer that she needed to drive him to the airport so he could pick up the car he had rented so the two of them could go skiing that night -- none of which was true or planned.
He loves to watch TV crime dramas like "Law and Order: SVU," and sometimes, he thinks the stories are real, and he's a police officer.
"I sort of just fall into this 'Oh my God, this is real, I'm a cop [idea],' and then I think, 'Wait, this is TV drama and they've thought about this plot for months and Jonah, you're not a cop, you're a mental patient,' and I have to step back sometimes and say to myself, 'TV is fake.' If I get too into it, I can say, 'Yeah, go bust that guy.' "
Some people with schizophrenia are unable to pierce the veil of their delusions, as Jonah often can.
John Csernansky, chairman of psychiatry at Northwestern University, said in an interview last year that his patients' delusions often are based on the least commonsensical interpretation of what they experience.
"I had a patient many years ago who came with the delusion that there was a big intergalactic war going on, and I said, 'Why do you think that?' and he said 'I looked up in the sky and the stars were gone.' And the idea just occurred to him at that point that the only explanation for that would be that there was some horrible war going on. He didn't think maybe it was a cloudy night -- that thought didn't occur to him."
About 75 percent of people with schizophrenia hear voices that they believe are people or entities speaking to them. Jonah does, too, but his medication helps control them, and the messages the voices deliver have never been violent or extremely critical, as they are for some people with the disorder.
After walking to the Post-Gazette for his first interview, Jonah said "my voices are like a thought almost. Let's say I'm walking down to this building, and I hear a voice, 'Keep going. Keep walking that way' and then I walk down and look, the voice was right. So they're helpful a lot of the time. Or the voice will say, 'you'd better take a shower tonight,' or 'you'd better set your alarm tonight because you've got to get up and see the doctor.' They're never like 'Go kill someone.'
"Then other times, I feel like I can read other people's thoughts for a moment, and it kind of weirds me out. I'll be like, 'What did you just say to me?' I hear a voice that will sound like you, you know, and then you'd say 'What are you talking about Jonah? Are you OK?' "
Researchers believe the hallucinations are some kind of disruption of the internal brain signaling system we use to separate our own thoughts from those of others. "Let's say one part of my brain has a thought that something bad is going to happen. Normally that would be communicated to another part of my brain in a way that makes it clear that it came from inside my mind," said psychiatrist Vikaas Sohal of the University of California at San Francisco.
"But if that process were disrupted, as it seems to be in people with schizophrenia, it might not be clear that this thought came from you yourself and you might attribute that thought to coming from the outside world."
Jonah also has thinking problems, and increasingly, brain researchers see this as the biggest challenge facing most people with schizophrenia.
"Existing antipsychotic medications do a decent job of controlling delusions and hallucinations," noted Konasale Prasad, a schizophrenia researcher at the University of Pittsburgh. "But what we have noticed over the last three decades is the improvement in hallucinations and delusions" does not predict how well patients will do in managing day-to-day tasks.
Like others with schizophrenia, Jonah struggles with "working memory" -- keeping a list of items in mind long enough to carry out a task, whether it's directions to a store or the steps needed to perform a particular job. He now uses his smartphone to keep notes on things he needs to do, but even that isn't enough to make him confident that he could hold down an office job of any complexity.
His notes are vital, he said, because "Recently, I couldn't remember, 'Hey, do you want me to take the train on the 21st or the 22nd?' and when I used to do construction jobs, the foreman would say 'Go pick up 2-inch screws,' and then I'd be like, 'Did he say 12 2-inch or 10 2-inch?"
Jonah would like to work full time, "but it looks like I would have to do a physical job, because I don't know what I would do mentally, because I'd have to write everything down." He relates it to the movie "Memento," about a man who constantly has to write Post-It notes because he has no short-term memory. "Well, I hope I don't go all the way Memento. I'm hoping I don't lose track that way."
Ms. McHolme has also noticed the cognitive deficits. "He used to read constantly and he hasn't read a book since he got sick. Some of that is he thinks if he reads it, it will happen, and he doesn't want to be responsible for that."
Strong family support
Jonah is blessed in one way.
He has a strong, supportive family that has helped him financially and kept his life on track.
His mother is his main chauffeur, health insurance advocate and emotional backstop. She spends time with Jonah almost every week, and takes some comfort in the statement of one therapist that Jonah is "the most contented patient with schizophrenia he's ever seen."
But she doesn't sugarcoat the impact his disease has had on her life and her hopes for the future. When Jonah got schizophrenia, it was -- she searched for a response -- "just awful."
Ms. McHolme, who also has an adult daughter, said that before his first psychotic break, Jonah "was always the golden boy -- always responsible, he was an athlete, he was smart and he never gave me any real trouble."
She was aware that Jonah had behavior problems in his sophomore year at college -- skipping classes, using drugs and alcohol -- but she didn't suspect he had a serious mental illness until she got a call from a doctor at Western Psych about his confinement there.
Scientists believe that people with schizophrenia are born with some kind of connectional problem in their brains, and that stress in late adolescence or early adulthood -- hormones, social pressures, or drug use like Jonah's LSD experimentation -- can trigger the onset of the disease.
For several months after his diagnosis, doctors struggled to find the right combination of medications.
Eventually, he was put on clozapine, which was his mainstay antipsychotic in the 2000s, and which many psychiatrists feel is the most effective medication on the market.
It does have side effects, though, including lethargy and weight gain.
Ms. McHolme said the side effects aggravated some symptoms of the disease.
After Jonah got sick, "the biggest change was his lack of affect. He wasn't fun. He had been voted as having the best sense of humor in his senior class in high school, and that disappeared."
"Everyone gets worried about my manic-ness and a lot of people think if I act out I'm crazy," Jonah said, "but the clozapine was so sedative that I just sat around, and I wasn't pepped up, and I couldn't perform mental functions. It did well, but I wasn't doing normal day-to-day things like cleaning my house."
Partly as a way to combat the mental fog of the drug, Ms. McHolme believes, Jonah also began smoking because the nicotine gives people a short-term boost in their ability to focus.
Jonah stopped taking clozapine after a health crisis two years ago.
In September 2011, Jonah experienced abdominal pain and spent weeks in the hospital. Doctors told him he had pancreatitis, an inflammation of the pancreas that is a rare side effect of taking antipsychotic medications. They then discovered his pancreas was starting to die.
Norman McHolme remembers the day Jonah went into emergency surgery. It was a Sunday, because he was watching the Steelers, and he got a text message from his wife at the hospital that she would be coming home as soon as Jonah was admitted. Then, she called and said "he's going to surgery and he's not going to make it." He went to the sixth floor of UPMC Presbyterian Hospital, and his wife was crying by the elevator. A doctor had stopped by and said they were "going to take out the pancreas and part of the intestine, and there's a very small chance he's going to make it."
As it turned out, they had to remove only part of his pancreas. He spent six weeks in intensive care and a nursing home before being discharged. He now has to monitor his blood sugar and watch his diet to avoid diabetic symptoms.
Last year, Jonah switched to Zyprexa as his main antipsychotic. While it didn't make him as listless and foggy as clozapine, it also didn't control his manic moods and hallucinations quite as well. Recently, he changed to a newer drug called Latuda "because my doctors said your voices are emerging again, kind of rising up a little bit again."
Each time Jonah has had to wean himself off one antipsychotic to start on a new one, there is a period of instability, Ms. McHolme said. It's a common problem for people who take psychotropic drugs.
A devastating disease
For families like the McHolmes, living with someone with a serious mental illness puts a strain on them that arguably is worse than if they were caring for someone with lifelong physical disabilities.
Because schizophrenia strikes just as young people are about to begin their adult lives, its psychological damage to families can be particularly overwhelming.
"This is one of the most devastating illnesses we deal with in all of medicine," said University of Wisconsin psychiatrist Ned Kalin. "It strikes people early in their life just when they are getting off the ground and when families are feeling excited and somewhat apprehensive about how they're going to launch their children. And schizophrenia in some ways is the most disabling of all, because it results not only in hospitalizations and greater risk of suicide but also social dysfunction that results in economic problems, the inability to work and isolation."
But other doctors say schizophrenia isn't always a life sentence. Pitt's Dr. Prasad, who works on early intervention with people who have schizophrenia, said "when we're able to get to people quickly enough, I can give you any number of examples where people have gone back to school, gotten a Ph.D., gotten married and had a family and gotten a fairly well-paid job."
The difference in how patients fare may not just be a matter of how soon doctors intervene, but how severe the illness is. As with many other mental disorders that were first defined a century ago, doctors now believe that schizophrenia, seen from a neurobiological perspective, may actually be a collection of diseases that exist along a spectrum, much like autism.
To help her cope, Ms. McHolme became an advocate for people with mental illness, primarily by working through NAMI, the National Alliance on Mental Illness.
"I thought, this disease ruined his opportunities, but I'm not going to let it do that to me, and the way to make sure of that was to do advocacy."
Mr. McHolme, a property developer and manager, has provided thousands of dollars of support to Jonah for his daily needs and medical care, as well as trying to find him short-term jobs to give him a sense of purpose.
Before his stepson became ill, Mr. McHolme said, "mental illness wasn't part of my life." Living with Jonah's problems, he now knows that "there is a stigma attached to people with mental illness and a lot of it is disdain. You see homeless people, many of whom have some degree of mental illness, that people walk right past -- no eye contact, and really, the public just sees them as an annoyance. As long as it's not bothering them, they could care less, and that was probably my attitude for a long time. But now it's sunk in."
His life is 'OK'
Despite his health problems and his struggles with disordered thoughts, Jonah said he is happy with his life.
"I'm set up," he said. "I have a family, and I have responsibilities I can perform, whereas some people with this disease are at the point where they can't even make their own meals."
The McHolmes, both in their 60s, have thought about what it will mean for Jonah if they are no longer around. Ms. McHolme said she has a life insurance policy that will be paid into a trust fund for Jonah, and the house he lives in is part of the trust, too.
Mr. McHolme is thinking about semi-retirement, but the constant care Jonah needs troubles him. "I'd like to substantially alter my work pattern so if I want to go away for two weeks, we can. Well then, what do we do about Jonah for two weeks? I don't know if that's going to be an opportunity for her."
Despite these obstacles, Ms. McHolme said she has seen signs of improvement in Jonah. In the last year, "he has taken charge of his own life and I admire him immensely for managing his Social Security disability, paying his bills, watching his diet, and doing the things that make him happy."
At the same time, Jonah has seen many friends drop away, and he understands why. "I create uncomfortableness. I think it's that they don't want to get involved with an insane patient."
As a young man who once had girlfriends, he also realizes those possibilities are now limited. "I don't really care -- I miss girls, but not really the girlfriend thing. But I like the companion part. Someone to talk to, a pretty face, stuff like that."
There is one other thing worth noting about Jonah. After repeated inquiries by the Post-Gazette, he was the only person with schizophrenia in the region who was willing to talk about his illness.
That says a lot about the stigma attached to the disease. It also says a lot about Jonah himself.
"I think a lot of people who get a mental illness are a little sensitive about talking about it, but after the years go by it kind of wears off, and I think it just depends partly on your personality. It's pretty fortunate I'm able to talk to people and explain this condition instead of keeping it inside me and freaking out."
How does he look at his life?
"It's just my life. I can't say I love my life, but I like it, I've had a good time with it. And it's OK."
Number of people affected: 3.1 million in the United States, 1 percent of the population.
Onset: Late teens or early 20s for men; mid-20s for women.
Symptoms: Delusions (false beliefs); hallucinations (hearing voices); social withdrawal; poor thinking skills.
Derivation of term: From the Greek for "split mind," schizophrenia actually does not involve multiple personalities or other forms of split identities.
Where to get help: If you are concerned that you are experiencing symptoms of mental illness or have family members who are, you can contact these places: Western Psychiatric Institute and Clinic of UPMC has a call center for general inquiries and for scheduling outpatient appointments at 412-624-2000. The clinic, in partnership with Allegheny County, also offers the re:solve Crisis Network, which provides telephone, mobile, walk-in and residential behavioral health crisis services around the clock to any resident of the county at 1-888-7-YOU-CAN (1-888-796-8226). Help can be found at the West Penn Allegheny Health System by contacting www.wpahs.org/specialties/psychiatry, or calling 412-330-4000.
Correction/Clarification: (Published January 28, 2013) An estimated 3.1 million people in America have schizophrenia. In an earlier verson of this story a fact box accompanying the story gave an incorrect figure.
First Published January 27, 2013 12:00 am