'I know what it's like to lay in bed and want to die'

After the Jan. 8 tragedy, fear arose among Tucsonans with mental illness: 'Are they going to start locking us up again?' ... 'Am I now the enemy?'
2011-04-17T00:00:00Z 2011-07-31T13:56:04Z 'I know what it's like to lay in bed and want to die'Carol Ann Alaimo Arizona Daily Star Arizona Daily Star
April 17, 2011 12:00 am  • 

For some Tucsonans touched by the tragedy of Jan. 8, sorrow was tinged with a sense of dread.

Scores of locals being treated for mental illness cringed to think the public might paint them with the same brush as shooter Jared Lee Loughner, whose chilling grin and bizarre rants made headlines across the globe.

"Are they going to start locking us up again?" a woman with schizophrenia asked two days after the shootings, at the start of classes she was taking to help her lead a healthier life.

"Am I now the enemy?" asked a man among her classmates.

Beth Stoneking, a psychologist who oversees a local wellness program for people with mental illness, led the angst-filled question-and-answer session that day.

"A common theme was, 'Now what do we do? They hate us, and they're afraid of us,' " Stoneking recalled.

The comments were painful to hear, she said, because people striving to recover from mental illness already face widespread prejudice.

"The last thing they need," she said, is for Loughner to be perceived as their poster child.

For months, mental-health experts nationwide have been weighing in on the tragedy, and there's one point on which they are adamant: If the public's takeaway message was that those with mental illness are dangerous, then the public got it wrong.

In fact, they say, violence toward others is rare among the one in 17 U.S. adults - more than 44,000 people in Pima County - who live with severe mental illness. If they harm anyone, it is most likely to be themselves.

Violence tends to occur only in severe, untreated cases, such as when someone has psychosis, paranoia and hears voices that give commands, said Dr. Wayne K. Goodman, head of psychiatry at Mount Sinai Medical Center in New York City; and Dr. Dennis S. Charney, dean of its affiliated medical school.

They worried the Tucson shootings may cement negative attitudes toward those with mental illness - driving more to try to hide their conditions and avoid treatment.

"The spotlight on Tucson could deepen the already profound stigma," they wrote in a recent column for The New York Times.

Stigma can cause more harm than the illnesses, said California psychologist Stephen Hinshaw, a pioneer in the field of stigma research.

"The pain engendered by mental illness is searing enough, but the devastation of being invisible, shameful and toxic can make the situation practically unbearable," he wrote in the 2008 Annual Review of Clinical Psychology.

Stigma is rooted in myths that those with mental illness are immoral, or lazy, or simply victims of bad parenting, Hinshaw said. Such myths persist, he said, despite mounting medical evidence of the roles genetics and brain chemistry play in determining why some people get sick and others don't.

Many are devastated when diagnosed, said H. Clarke Romans, head of the local chapter of the National Alliance on Mental Illness, an education and support group.

"This is a club no one wants to join," Romans said. "People would rather be told they have colon cancer or leukemia."

To help dispel myths, some Tucsonans who have lived for years with mental illness have agreed to tell their stories. All are receiving treatment through the public health system, the local veterans hospital or workplace insurance.

EX-MILITARY

Former sailor George Leon first heard voices while stationed aboard an aircraft carrier, the USS Constellation.

Then 23, he thought maybe everyone heard voices at times.

"I thought it was my intuition, my inner child speaking," said Leon, a 1982 graduate of Palo Verde High School. "I didn't know it was schizophrenia."

The voices told him a shipmate was plotting against him, Leon, now 47, recalls. He avoided the fellow sailor, and left the Navy when his time was up.

Back in Tucson, the voices told him to do "weird stuff," like leave his apartment at 3 a.m. and walk across town to his parents' house.

Leon's mother insisted something was wrong and got him to a psychiatrist. After he was diagnosed, many members of his large family stopped coming around. Some stayed away for years.

"I remember me and my parents spending a lot of time alone. I had an uncle who asked, 'Am I going to catch it?' "

Treatment was tough. In the 1980s, antipsychotics often had awful side effects. They made him lethargic, stole his sense of self. At times all he could do was sit "with my mouth open and my tongue quivering," he said.

Sometimes he got fed up and threw away the drugs. The voices quickly returned.

"I thought my mother was poisoning me so I stopped eating," Leon said.

His mom took him to court to force him into the hospital. Only then did he face his situation, vowing to do all he could to get better.

He received psychotherapy at the local veterans hospital, and took part there in a trial of a new drug, olanzapine, that turned out to be life-changing.

"For the first time I had no side effects. I could sit down and have a conversation."

Today, there are many new treatments. "It's really a blessing compared to 24 years ago."

Leon's illness prevents him from working, but he volunteers for the National Alliance on Mental Illness, running a public-awareness program.

He still hears voices sometimes. Now he talks back to them, a skill he learned at the VA hospital.

"I just tell them to be quiet," he said.

WOUNDED HEALER

Beth Stoneking is a rarity among mental-health professionals. She lives with mental illness and is willing to say so publicly.

A psychologist with two Ph.D.s and a master's degree, Stoneking, 59, is an assistant professor in the University of Arizona's medical school and also runs programs aimed at helping people with mental illness live healthier lives.

Such achievements might not be possible without the psychiatric medications she's been taking for decades to control obsessive-compulsive disorder and generalized anxiety disorder.

Without the drugs, panic attacks left her drenched in sweat, heart pounding, gasping for breath. She checked doors repeatedly to see they were locked, endlessly adjusted seat belts and car mirrors, made mountains of detailed to-do lists.

"It was interfering with my life but I kept it a secret," Stoneking said of the disorders, diagnosed when she was 29.

Though she's never attempted suicide, she said, "I know what it's like to lay in bed and want to die."

Stoneking has had years of psychotherapy. She meditates, exercises and listens to calming music - all of which helps keep her mind in balance.

Seeing the mental-health profession from the inside has been eye-opening, she said, because stigma is common even among those trained to help.

"There's more discrimination, prejudice and stereotypes in the medical and behavioral health systems than in the general population," she said, a view echoed by those who study stigma.

Stoneking is sharing her story to help change that.

"It has to start somewhere," she said.

HIGHS AND LOWS

Scott Whitley isn't proud to admit it, but there were times his own mother couldn't stand being around him.

Before he came to grips with his mental illness, he would fly off the handle and yell at her for any perceived slight.

"It alienated me from my family for two years, and rightfully so," he said.

"My mother was afraid of me."

Whitley, 57, was diagnosed in 1989 with bipolar disorder, a condition that caused his moods to swing wildly between euphoria, anger and depressions so dark he once planned his own suicide in precise detail.

"I was going to drive out into the desert and end it," he said. He got a hose and duct tape to pipe in carbon monoxide from his car's exhaust.

"I was tired of being me," he recalled. "I got to such a state of self-loathing I went numb, and total hopelessness set in."

A friend found out about his plan and saved his life.

After years of hit-and-miss treatments, he's found a regimen that works for him and follows it religiously. He takes medication - mood stabilizers and antipsychotics - and attends peer support groups. He keeps a journal to track his moods and behaviors, such as a tendency toward impulsive spending when a manic phase kicks in.

He also works part-time at the local chapter of the National Alliance on Mental Illness.

Whitley and his mother made peace. For the last two years of her life, he visited her nursing home every other day.

"I feel that I can give back now and not just be a taker," he said.

"It's a good feeling."

Contact reporter Carol Ann Alaimo at calaimo@azstarnet.com or at 573-4138.

Copyright 2014 Arizona Daily Star. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.

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