The story of mental illness is a sad, sad one, as anyone who has suffered it or seen it in a loved one knows.
Family members tell me that the tragedy is more acute because of the stigma that seems to be attached to such a diagnosis - particularly a diagnosis of schizophrenia.Eliza called me last week to talk about her daughter. Because of the prevailing attitudes, she said, I couldn't use real names. It would be too hard for the rest of the family. Names, she said, weren't important anyway. Her daughter is the important part of the story.
"If you picture a wild-eyed, aggressive person with split personality when you hear `schizophrenic,' you're wrong," Eliza said. "My daughter is intelligent, quiet and sensitive. I know people think of bizarre behavior, like Hinckley shooting the president. In fact, that's seldom the case.
"She was considered gifted as a child. She was second in a national vocabulary test. She loved academics. In high school, she won statewide writing contests and her choice of universities, but she decided to go to BYU."
The daughter Eliza described was a parent's dream: She was a good girl, always obedient. She didn't experiment with drugs. She never went off the deep end. A gifted athlete, she won numerous tennis trophies.
There was no one moment when Karen changed. She became more and more withdrawn when she was a teenager, but everyone knows that teenagers are "moody." Her parents weren't terribly concerned at first. When her family moved, forcing Karen to change schools in her senior year of high school, she "didn't make a good social adjustment."
In college, she "retreated and retreated. We took her to counselors and they told us it wasn't serious."
As time passed, Karen's parents knew that something was seriously wrong. She lost her part-time job at college because she kept getting things mixed up. Being fired devastated her. "She was getting awfully confused," her mother told me. Finally, withdrawn and unable to concentrate, Karen dropped out in her senior year at BYU. Her mother later learned that Karen had become frightened and didn't really attend school anymore. She was "mostly wandering around the campus."
"The biggest mistake we made," said Eliza, "was believing psychologists. We thought it was a psychological problem. It wasn't. She was finally diagnosed as having schizophrenia."
Karen was lucky. Her parents got her into a yearlong research program at the National Institute of Mental Health in Bethesda, Md., where they found a medication that helps Karen and got down the proper dose.
"The medication helps. But it doesn't restore her to what she was before. During the 10 critical years (since she became ill), she has lost a lot of self-confidence. With each job she takes, she goes down a notch. But a schizophrenic person does not lose her intellectual ability, just confidence, some motor coordination and judgment. She cannot work on any job where there are deadlines."
The gifted child about whose future they painted rosy dreams now lives in a group home out of state. The young woman who won scholarships to a number of colleges straightens hangers at a thrift store. And her mother is grateful that she's doing so well. And now that mother is crusading for something she hopes will improve the life of everyone who suffers from schizophrenia.
She is part of a drive by the Alliance for the Mentally Ill to collect signatures on a petition asking Congress to allocate more money to brain research. The group, nationally, hopes to have 1 million signatures by the end of the month.
"You can provide all the housing and the caseworkers in the world, but what we really need is more research and better medication," Eliza said.
Some things are known about schizophrenia. It's a physical abnormality in the brain. Stress seems to aggravate it. A study of identical twins, born to a schizophrenic mother, then separated at birth, indicate the tendency to mental ilness is genetic, not environmental. But for every known fact, there are five questions. Mental illness, particularly schizophrenia, is "the most vastly neglected disorder of our century," she told me. "I'm a fiscal conservative. I know there's no extra money. But we will spend much less in the long run if we can cure mental illnesses."
Cancer research breaks into about $100 a patient each year, and there are similar funds for heart research. The government provides less than $14 a year a patient to research mental illness.
The cost to deal with the problems is much higher.