Lessons in reality, fairness.....
Lesson in reality, fairness a passionate advocate for mental-health treatment, Nelson Kull uses his background as a paranoid schizophrenic to bring about change.
Nelson Kull truly did not plan to harm the leader of the free world. He just got caught up in a loudmouthed political discussion many years ago when he publicly vowed to kill then-President Jimmy Carter.
The next day, two Secret Service agents arrested Kull, who was 20 at the time, and spent several hours grilling him. Did he own a gun? Did he know how to use explosives?
Kull was locked in a federal prison cell for three days, drinking coffee and playing chess with counterfeiters and embezzlers. He made another pledge after he was released: He would never return to prison, where many mentally ill people end up.
Kull has managed to keep that vow in the years since and has emerged from his paranoid schizophrenia to become one of the state’s leading advocates for mental-health issues.
Schizophrenia afflicts an estimated 2.5 million people in the United States. Kull’s story shows how new medications developed in the past 10 years can help sufferers of the disease overcome the delusions and other debilitating symptoms they endure.
Today Kull, 45, runs a kind of social center for mentally ill people in Orlando. He also spends much time in Tallahassee, needling politicians on mental-health issues as he speaks for the 850,000 mentally ill in Florida.
He is not looking for sympathy, and he rarely gives it out. He says he wants equity for the treatment of mental illnesses, which lack the clout or cash devoted to other medical problems.
“It just doesn’t make sense for the state to ignore mental-health issues,” Kull says. “They save money in the long run if they pay attention to mental illnesses and treat them up-front before people bottom out.”
Kull is widely known in the mental-health community, where colleagues say he wields influence because he knows the problems involved firsthand and also works hard to amass detailed knowledge of the issues.
“He’s very witty; he’s incredibly insightful; he’s incredibly passionate about mental-health issues,” says Gary Blumenthal, executive director of the Tallahassee-based Advocacy Center, a group that helps people with physical or mental disabilities. “He carries a tremendous amount of weight because he knows what he’s talking about. I truly think he is one of the most outstanding advocates in the state of Florida.”
LIFETIME OF EXPERIENCE
Kull’s experience with mental illness started as a child.
Born John Nelson Kull III, he grew up in a close family with his father in the Navy and mother in varying degrees of reality. When Kull was 5, his mom started apologizing one day for killing his father. Dad was away on tour somewhere in the Mediterranean Sea.
“So there I am, 5 years old, trying to reason with her,” Kull explains. “I keep telling her, `C’mon, Mom, Dad’s on the big ship. He’ll be back.’ But she doesn’t want to hear it.”
Her bouts with schizophrenia were regular throughout Kull’s childhood and adolescence. The family lived in various locations, including Korea and Key West, before settling in Orlando.
Kull was a bright kid, skipping a grade and becoming a leader of his peers. Then he slid into solitude when his own illness emerged in his teens. It started with staying up all night, pacing, talking to himself and playing records.
Schizophrenia is a complex mental illness often marked by delusions, hallucinations, disordered thinking and bizarre behavior. It can run in families, though doctors are not sure exactly what role genetics plays in getting the disease.
Schizophrenics often hear voices that engage them in conversation, pelt them with discouraging messages and sometimes give commands.
Always a history buff and reader, Kull’s voices included Stalin, Hitler, Roosevelt and other historical heavyweights. He can’t remember what they said exactly, but he says guys like Stalin were just mean and nasty.
Kull sometimes lashed out at them by throwing punches in the air. He was never violent with real people. But he lost all focus on the world and got sucked into the imaginary one inside his head.
“Intellectually, I knew they weren’t there, but I couldn’t help being drawn into conversation with them,” Kull says. “I couldn’t turn them off. They would come for as long as they wanted and in as much detail as they wanted. It gets to the point where you can’t do anything else because you’re too distracted. I wasted half my life in the fantasy world.”
He was put on strong medications that quieted the voices but did not silence them.
Kull graduated from high school and attended a vocational school. He was in a printing class one day when he declared that he would kill Carter. Kull says he was just responding to classmates’ avowals that former presidents Richard Nixon and Gerald Ford should be hanged.
“I’m glad it happened because it made me realize that I never wanted to go back to jail,” Kull says. “Before that, I had been thinking about trying to make money with some friends who were growing marijuana in the woods, but three days in jail cured me of that idea.”
Kull fumbled through the ensuing years. He lived with his parents and took cooking classes before enrolling at the University of Central Florida. He got various menial jobs, then would work for a month or less before getting fired or quitting.
He could spend 10 hours a day in front of the television — mindlessly soaking up music videos and sitcoms. He teetered on the edge of the real world and his own.
“The slower your descent into hell, the slower and longer it takes to get out,” Kull says. “It was a total nightmare. I knew my life was falling apart, and that I was just getting weirder and weirder all the time.”
Kull’s father, John Nelson Kull II, died from lung cancer in 1984, and the son took over as main caretaker for his mother, Marguerite. Her own illness receded greatly in her later years. Kull describes her as a regular old lady by the time she, too, died of lung cancer in 1990.
A NEW DIRECTION
About that time, some friends persuaded Kull to attend a few state meetings on mental-health issues. He didn’t have much of an attention span in those days. He usually fell asleep at the gatherings, which often were held too early for a guy who stayed up until 4 or 5 a.m.
Yet, he became intrigued by the thought of becoming an advocate and joined a small group of people who received $50,000 in state money to start the Pathways Drop-In Center in 1993. The idea was to offer mentally ill people a haven for food, freebies such as donated shoes or clothes, and a place to socialize.
But even after a small-scale Pathways was started, Kull was hampered by his mental illness. He could not concentrate for long.
It was around Labor Day 1994 that Kull’s doctor put him on a new medication for schizophrenia. It is called Risperdal, an advanced antipsychotic drug that works better with fewer side effects than traditional treatments.
Kull says within days of starting the drug, he felt an improvement. He found it hard to sit through a marathon weekend of videos — an annual event highlighting the best videos of the year on one of the music channels.
“I used to love that stuff, I would watch that 24 hours a day for three full days,” says Kull. “But I remember that year, by the end of that weekend, I decided I was never going to spend another day like that.”
More and more, he regained his ability to concentrate and started taking classes regularly at UCF. He earned a degree in liberal studies in 1996. He became engrossed by mental-health issues and read diligently, attending meetings and speaking out.
Today, Kull runs Pathways as its executive director. The center has a $110,000 annual budget from state, county and private donations.
He also serves on the boards for several mental-health groups, regularly speaks at public meetings on behalf of advocacy groups and churns out long, well-written e-mails that lay out the latest twists in mental-health policies.
He rankles others at times with his straightforward manner, but he usually can smooth things over.
“Sometimes people just don’t want to hear what he has to say, yet he’s always there, and he never gives up,” says Margo Adams, executive director of the Florida Psychiatric Society. “Somehow he can always make you smile despite the seriousness and intensity of his message.”
KEEPING IT LIGHT
Kull says humor is crucial.
When in a good mood, he lets it flow freely in hearty outbursts of laughter. The noise involves his whole body. He rocks sideways with the sound, and his arms move unpredictably. He may grab a pants leg in mid-laugh or jerk a hand across his chest.
It is a scar from the early psychiatric medications — an uncontrolled twitching of arms and legs. The condition is called tardive dyskinesia, and it is permanent.
Kull still keeps an erratic schedule, sleeping very little and often forgetting to eat. When he does chow, a favorite dish is two eggs on toast with margarine and honey. He feeds on caffeine all day in coffee or iced tea.
He lives in his parents’ former house in east Orlando, which he shares with two roommates, two dogs and a tank full of fish.
When at Pathways, Kull often holes up in his office writing his “latest rant” with his hunt-and-peck typing. His dingy leather chair creaks easily. When Kull gets riled up on a subject, the chair is a symphony of squeaks.
His body movements punctuate the fast-paced dialogue. He leans forward, takes off his glasses and sweeps a hand through his hair. Important points are followed by the phrase, “I’m serious.”
New psychiatric drugs are among his passions. Kull gives them 90 percent of the credit for his recovery. He says that he worships the drugs, then gives the thought a good laugh. He gets quiet again.
“It’s better living through chemistry, no doubt,” Kull says. “But sometimes, you do have to wonder. I mean, when I’m feeling really good, I have to think, is it Nelson or is it the drugs?”
But he would never consider abandoning them. Unlike many schizophrenics who continually go on and off their medications, Kull always has remained on his prescriptions. He would be a complete mess within a day, he says, if he stopped.
In the future, Kull would like to open another Pathways center across town, work on a housing project for the mentally ill and perhaps go to law school.
It has been years since he heard from Stalin and the gang, though he does not want to be considered ordinary, either. There is a bumper sticker on his car: “Normal people scare me.”
“I have never wanted that,” Kull says. “I’ve never had the least bit of concern about being normal. I always wanted to do my own thing, my own way. Of course it helps being crazy; people don’t expect much.”
Big laugh.
“But seriously, the people I know are more worried about having food and a roof over their heads. They have to worry about being safe. If you can have those things, and maybe help a few other people out, what difference does being normal make?
“I’m serious.”
Orlando Sentinel/Metro
Robyn Suriano, Sentinel Staff Writer
21 May 2001
(Copyright 2001 by The Orlando Sentinel)
Robyn Suriano can be reached at rsuriano@orlandosentinel.com or 407-420-5487.