Health & Fitness

Living with schizophrenia: Haunted by voices

“Kill yourself! You’re worthless! Why are you still here?”

The voices in Denise Baynham’s head are ceaseless and demanding.

For three decades, the 54-year-old Kansas City, Kan., woman has struggled with schizophrenia. The chronic mental illness twists how people think, feel and interact. It can spawn paranoia, delusions and auditory hallucinations. In extreme cases it can drive people to kill others, or themselves. Sometimes the voices urge Baynham to wrench the wheel and drive off the road.

“Do it!” they urge. “Do it now!”

Resisting wears her out.

Baynham, who is on medication, is the assistant director of Side Inc., a peer-run organization that serves mentally ill people in Wyandotte County. Recently she was elected president of the Kansas Consumer Advisory Council for Adult Mental Health. Still, she must remind herself daily that she is a worthwhile person.

She’d like others to think that, too — although she knows not everyone will.

Schizophrenia has always been easier to fear than to understand. Recent publicity hasn’t helped. The disease reportedly afflicted both accused Colorado movie-theater gunman James Holmes and Arizona shooter Jared Lee Loughner.

That’s no reason to stereotype, Baynham said.

“The first thing (the media) jumped at was ‘Could this have been someone with a mental illness who had schizophrenia?’ ” she said. “I just feel they think we all could go out and do something like this. That doesn’t describe the kind of person I am.”

Schizophrenia, however, affects everyone differently.

Angela Hardee of Olathe, who asked to go by her maiden name for this article to protect her family, experienced schizophrenia’s darker side with her son. Now 25 and in jail, he lost himself in a world of violence and paranoid delusions when he was just a teen.

It was a shocking turnaround from his happy childhood. Highly gifted and sensitive, he scored in the 99th percentile on national tests, wrote poetry for his grandparents and played complex pieces by Rachmaninov on the piano.

“He was a delightful kid,” she said. “Very sweet and caring.”

But by his 16th birthday, everything changed. He screamed, broke things and flew into rages. Diagnosed with schizoaffective disorder, which includes elements of bipolar disorder, he began to hear voices telling him he was an Egyptian pharaoh or a Roman soldier.

Drugs and alcohol just made things worse.

Hardee, a therapist with a master’s degree in psychology, was powerless against his creeping psychosis.

A psychiatrist prescribed antipsychotic medication. The pills caused him to gain weight and lose his libido. Hardee began finding them under cushions, in potted plants, on top of the armoire. She called local mental health centers, but they were powerless to make him come in for help, or compel him to take his medication. And because he was so smart, he hid his symptoms well.

Hardee knew he needed to be institutionalized.

There was no room.

“There’s a waiting list at the (Kansas) state hospital in Osawatomie,” she said. “There’s just so many people with psychiatric problems, and they keep cutting the budgets. I feel like no longer is there a safety net for these people.” As a result, she said, many severely mentally ill people are left in the care of burned-out family members who are, at best, ill-equipped to help them, and, at worst, unable to control the delusions.

“When somebody (with schizophrenia) goes on a shooting spree, everybody says these are evil people,” she said. “They’re not evil people. They’re sick people, and they need help.”

When it came to her son, there was only a little to go around.

In the last several years Hardee called police to her house more than 40 times. He couldn’t stay in her home. And he refused to comply with any treatment plan. Seeing no other option, Hardee kicked her son out of the house and changed the locks. Instead of going to a mental health center, he chose to be homeless and live on the street.

Today her son is behind bars. Police in Gardner cobbled together minor charges and sent him to jail, where he’s held in a special section for mentally ill inmates. But soon, Hardee knows, he will be out, and the problems will start again.

She worries what might happen. He’s threatened suicide multiple times and threatened to kill people.

Hardee, who answers the information line for the Kansas chapter of the National Alliance on Mental Illness, is not surprised by the mass shootings in the news. She worries there will be more if states don’t spend enough money to care for people with serious mental illnesses.

Rick Cagan, executive director of the Kansas chapter of the alliance, in Topeka, said the incidence of violence involving such people is small.

However, he thinks Hardee is correct to be concerned about a possible increase.

Desperate to cut costs, recession-weary states have slashed spending for mental health care by more than $1.8 billion since 2009, according to a report from National Alliance on Mental Illness in Arlington, Va.

In the last four years, the alliance said, Kansas cut $14.3 million — or 12.4 percent — from state mental health centers. Missouri cut $21.2 million, or 6.8 percent of its mental health budget.

But the true cuts are even deeper, said Sita Diehl, the organization’s national director of state policy and advocacy: “That figure does not include cuts to Medicaid, by far the largest funder of mental health services.”

The result?

“We do not have the capacity to treat individuals who are mentally ill in our community mental health system,” Cagan said. “We’ve eviscerated it over the last several years, and we’ve closed so many hospital beds over the last several decades it has left very few options other than the ER, the street, jail or prison.”

In its last “Grading the States” report in 2009 the National Alliance on Mental Illness in Arlington, Va., gave Kansas a “D” for its mental health services.

The Health Care Foundation of Kansas City said states have a choice: Pay a little now, or a lot later.

“If people with mental illnesses don’t get the help they need in a timely fashion, that increases the chance of lots of things going wrong,” Cagan said.

Baynham, who was diagnosed with schizophrenia in her early 20s, is a survivor. But there have been times when she broke down and thought maybe the voices she hears were right.

Baynham has worked hard to live with a difficult condition. Her two grown children have no trace of the disease.

She’s proud of how far she’s come.

“Mental illness is nothing to be ashamed of,” she said.

“Once you get over the stigma within yourself you can overcome the stigma from others. I don’t want to be judged by my diagnosis. I want to be looked at for what’s in my heart.”