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Originally published March 12, 2011 at 7:02 PM | Page modified March 13, 2011 at 10:09 AM

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Eleanor Owen's tireless battle for mental-health care

Having a son with schizophrenia, Seattle's Eleanor Owen knows firsthand the heartache and worry families face. She joined others to found the National Alliance on Mental Illness.

HE IS your child.

You watch him go from artist to hermit, from scholar to stranger. He starts sleeping in the basement, in a box. You tell yourself it's an adolescent phase.

He walks the streets, barefoot and disheveled, a blanket around his shoulders and letters shaved into his head. Could it be drugs?

Then one day you find a noose he'd hung from a pipe.

Another day, he gets arrested after creating a disturbance at the train station, trying to get from Seattle to San Francisco on a movie-ticket stub.

Eleanor Owen was teaching and staging children's plays. Her husband, John, was an engineer. They were well-educated and comfortable and endlessly resourceful. Yet they felt helpless.

Their son's life, Eleanor says, "became more and more tragic."

At some point, she realized two things.

Her son had schizophrenia.

And she would fight for him with all her might.

Eleanor's a tiny little thing with a New Yorker's gift for storytelling and a laugh that ricochets through a room. She'll dive into anything, whether it's writing legislation or fixing plumbing. She's exuberant, warm and smart as all get-out. She has spark. Charm.

And then there is her other side.

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In Olympia, they used to call her "The Barracuda." She was angry and opinionated. Thought nothing of blasting mental-health workers and doctors and legislators.

"I was brash and frank and open and demanding," she says.

Now 90, she is less angry but just as feisty — a hundred-pound heavyweight who has had more influence on the mental-health system in Washington than perhaps anyone else.

"My sisters," she says, "seem to think I have devoted my life to this to atone.

"In retrospect, that is true."

LITTLE ELEANOR DeVito grew up in upstate New York, the third of eight children born to Italian immigrants. She had enough brains to skip ahead in school and enough sass to get her in trouble.

She was raised Catholic, but had so many questions. There was the issue, for instance, of her schoolmate, Florence.

Florence was quiet and sweet and never mouthed off. Eleanor, meanwhile, was "a hellion." Yet the church said Florence was damned — a Protestant.

"I thought, how can it be that she's going to go to hell?" Eleanor says. "I learned to question all authority."

Though her powerful mother wanted her to be a nurse, Eleanor envisioned a life in the arts. She bought a sewing machine on credit, and stitched her way through Manhattan theater and design school.

She got married and continued sewing costumes for dance troupes, including Merce Cunningham's. Then, in 1955, Boeing hired her husband and they came West.

Here, she sewed displays for Frederick & Nelson and The Bon Marché and taught dramatics to preschoolers. She picked up two degrees from the University of Washington, including a master's in education at age 54.

She landed teaching jobs at Lakeside School and the UW: Drama, anthropology, sex education. Soon she was giving courses across the country, showing teachers how to use the arts in education.

She and John had two children: first Susan, who is now an artist in New Orleans, and 2 ½ years later, John, who is called Jody by his family.

Jody was like little Florence: quiet and sweet. He took up collecting silver dollars with his mom and brewing root beer with his dad. He was brilliant, too, a natural artist.

Susan remembers struggling one afternoon to play the Joni Mitchell song "Both Sides Now" on the piano.

"Jody comes over and says, 'I think this is how it goes,' " Susan recalls. He didn't know piano. And yet there it was, note-for-note.

I've looked at life from both sides now, from up and down and still somehow,

It's life's illusions I recall. I really don't know life at all."

HANGING IN Owen's kitchen is a drawing Jody made in maybe first grade. It's a duck in some reeds and it's quite well-done. But it's also ominous and dark, and the duck, Owen says, looks so very lonely.

Susan says she now believes Jody was hallucinating from the day he was born. She thinks about him keeping such turmoil under wraps, and how, eventually, it would get to be too much.

As a high-school junior, Jody began closing himself off, terrified, in the basement. He would stumble around sleepless, speaking nonsense — arguing, pleading, acquiescing with the twisted voices in his head.

Eleanor remembers the morning, just before a trip to teach a course in Connecticut, that she found the noose.

She soon would give up her teaching jobs. Jody graduated from Lakeside, but along the way there were shrinks and suicide attempts.

The family became consumed with finding answers.

"I remember literally flailing about, in a very hysterical way," Eleanor says.

They wanted so desperately to fix him.

"WHERE DO you want these boxes, Mom?"

It's January and Jody is helping Eleanor get her Capitol Hill house ready for her 90th birthday, planned as a huge bash. Her husband John died before her 85th.

The fact that Jody is here at all — carrying boxes, working, paying rent — is a testament to his resolve to address his illness. It is also a testament to Eleanor's tenacity.

"Oh goody, you're back, Jody!" she squeals.

The house is a mess, with pictures and knickknacks and boxes everywhere. Simply imposing order looks like months of work, yet the party is in a few weeks.

"I suffer from TSA," she laughs. "Thrift store addiction."

With paint on her arms, a phone to her ear, and a boatload of plans, Eleanor is a dynamo. She says she takes no medication and needs just a few hours sleep. She has diagnosed herself as a "stable hypomanic."

Jody, by contrast, is reserved. He smiles warmly and listens earnestly. But his speech is somehow off. And you can see the struggle in his eyes.

"It's an overwhelming thing to feel defeated by a disease," he says. "Especially when it incapacitates one of your major organs."

The brain, he points out, is in charge of pretty much everything you do.

WHEN JODY started showing symptoms in the early 1970s, the mental-health system was also in a state of tumult.

Until the '60s, experts now agree, it was too easy to force someone into the state hospital and too hard to get out. Then, in the 1970s, several states, including Washington, began rewriting those laws. Pushed by civil libertarians, people with mental illness and budget-watchers, the new laws focused on patients' rights — including the right to refuse hospitalization.

The idea was to treat people in community mental-health programs. But in those early years, providers had little experience treating illnesses as vexing as schizophrenia.

Families trying to get their loved ones into treatment just stumbled around this stark landscape alone. In fact, some researchers believed that families caused schizophrenia. There was even a clinical term for it: the schizophrenogenic mother.

One thing hasn't changed, though: People with mental illness often do not want to be hospitalized. Some fear what will happen. Some don't believe they're ill in the first place.

Jody sure didn't. He was convinced the world was out to get him. And medication? He didn't want to take it.

Try as they might, the Owens couldn't force him into the state hospital.

Until he did something awful.

Sitting at her kitchen table recalling the story, Eleanor's face sags.

July 30th, 1977, around 2 a.m. The phone rang. It was Jody.

Come down to the police station, he said. Right away.

It was all such a blur. Eleanor recalls a detective saying something about a bar, a gun. A man shot dead. She came home, slumped against her husband's back, and felt him sobbing.

"Sobbing, sobbing, sobbing," she says. And looks away.

Jody was arrested, then sent to Western State Hospital, where he reported hearing "radio sounds from the walls." He rambled and paced and couldn't sleep for weeks on end.

Within three months, the prosecutor and Jody's attorney agreed on an insanity plea.

The hospital said he'd lost touch with reality. He was 21.

"It seemed," says Eleanor, "more than I could believe."

A YEAR LATER, she opened the newspaper. An elderly couple was killed in the Windermere neighborhood, bludgeoned by Angus Macfarlane, a mentally ill young man whose father lived next door.

There was more.

Earlier that day, Macfarlane had been refused admission to Western State. At the time, authorities had to prove not just that the patient was mentally ill but that he had immediate plans to hurt himself or someone else. Macfarlane apparently didn't qualify.

Now a nice old couple was dead, and a 23-year-old was sentenced to life in prison.

Reading the coverage, Eleanor was struck cold. The whole system, she realized, was broken.

She found the Macfarlanes in the phone book and rang them up. One-by-one, other families did the same. Suddenly, they were not so alone.

One mother said her son couldn't get mental-health treatment and would wind up in jail. The police would hold him, she complained, but the psych ward wouldn't. Another said when her son was turned away from Western, he went straight to the Aurora Bridge and jumped. The details were different, but the stories were the same.

From them, a social movement was born. They called themselves Washington Advocates for the Mentally Ill — WAMI for short. And Eleanor became the group's engine.

They met at kitchen tables, scratched out plans, then shoved them at lawmakers. The way they saw it, the laws protected rights, but not actual people.

Within months, then-Sen. Phil Talmadge introduced legislation and Eleanor offered testimony. Angry testimony.

The bill passed. Meanwhile, parents in other states were doing the same. Looked at one way, what they did was simply change some words in a law that most people don't even know exists. But it was much more than that. Eleanor and WAMI and the others changed attitudes — about how to treat people with mental illness, and about their families.

Within three years, twice as many people from King County were getting committed to the state hospital.

In the decades since, Eleanor has been a regular presence in Olympia and beyond.

In 1980, she helped found the National Alliance on Mental Illness, which has provided support to hundreds of thousands of families.

But she didn't stop there.

Over the years, she demanded the state start using newer psychiatric medications — and attacked the pharmaceutical companies for charging too much. She wrote a first-of-its-kind manual for families dealing with a mentally ill relative. In 1989, when Washington's mental-health system was a shambles, she championed top-to-bottom changes.

In 2002, she pushed for legislation that would limit the cost of prescription drugs. And when Rep. Frank Chopp, normally a protector of the downtrodden, didn't introduce it, she ran against him.

Gentle, she was not.

"Eleanor and I have been fighting for 30 years, really," says Amnon Shoenfeld, King County mental-health director. He says this with both exasperation and respect.

ELEANOR LIKES to talk about lessons. Here is one: Mental illness may be forever, but it's not the end.

Take the men from Jody's ward at Western. They'd lie curled in a fetal position; mutter to themselves; shuffle and drool.

One day, Eleanor remembers, a fire broke out on the ward. Suddenly, they snapped into reality.

"One of the men started giving orders," she recalls. "Line up at the door! Another one said, 'Get the fire extinguisher!' "

The experience was life-changing.

"It made me aware that down inside of everyone is the primal survival instinct," she says. "It made me believe in recovery."

Treating serious mental illness is part chemical — tinkering with medications until a window opens into reality. It's also part emotional — can the patient recognize he's sick? What is he willing to do about it?

For five years, Jody showed little progress. He paced and rambled and hallucinated. Then, in 1982, the hospital tried different medications. His psychosis began to recede. A window had opened.

"At one point in my treatment," he says, "I knew I could resolve it."

Eventually, a judge allowed Jody to move into a halfway house. All told, he spent six years at Western, and several more under court supervision.

Today he and five other men with mental illness rent a house he helped rebuild. In 2006, he got a degree in carpentry, and has been working for a furniture maker ever since.

He says before he does anything, he thinks.

Though long stable, there is no question Jody is still ill. But Susan says she once again sees the gentle soul he was before.

"I wouldn't have the strength to do what he did."

IT'S JANUARY 22nd, Eleanor's birthday, and the guests stream in steadily. Lawmakers she clashed with. Young people she mentored. Social workers who didn't see things her way. People with mental illness and parents she dropped everything to help. She laughs and gushes and hugs each one. "I'm so glad you're here!" she says again and again.

No one can believe she's 90.

"Would you like some homemade root beer?" Jody asks.

Susan Owen gazes at her mother.

"She saved him," she says.

Her mother laughs and tells stories and seems happy. But listen closely, says Susan.

Listen when Eleanor says the law is better — yet people in crisis are still turned away from the hospital. Listen when she says that mental-health agencies have grown — yet so many people with mental illness still face a bleak future. Or when she cites the latest tragedy from the day's news.

Susan sighs.

"She wants perfection and drives herself mercilessly.

"I think she is so unsatisfied with her results."

TWO DAYS after her 90th, Eleanor sits with her son in a living room still littered with party remnants. For years, they have resisted talking about his arrest. Now she decides it is time: time to talk, to learn, to understand.

The police file tells one story, with its tangle of witness statements, evidence logs and crime-scene photos:

Jody was making a scene at a bar and was escorted out. The next night, he came back with a revolver. He fired one shot that hit the ceiling. Several men sprung up and pounced, forcing him outside, fighting for the gun. Two more shots were fired.

Robert Ivory, 29, lay dead in the street. Another man was wounded. Jody says he didn't know them.

Eleanor broaches the subject carefully. You are a different person than you were then, she says. A "valiant warrior" against your illness. But "the truth is the truth." He should tell.

"I can't construe the whole story, because I don't know what happened to me," he says. His thoughts leap from scene-to-scene: a cliff, a police car, the bar, and finally, he is under a pile of people he thought were trying to kill him.

"I still don't believe I was the killer," he says softly.

Eleanor tries again. "Is it possible," she asks, "that it's just too painful to admit?"

He shakes his head slowly.

Eleanor then tells a story. When she was about 15, she drove her younger siblings to a swimming hole near a railroad track. When it was time to go, she called for them to get in the car. They straggled. She honked. A train was coming.

Her 6-year-old brother was killed crossing the tracks.

"It took me a long time to accept the fact that I was responsible for that," she tells Jody. "But it did happen, and I had to come to terms with it."

She looks at him gently. Mother and son. A dead brother. A dead stranger.

He gazes back at her, a pained look on his face.

But no. There are places he will not go.

That's when it hits you: The mind betrays. But it also protects.

The conversation moves and Jody brightens. He talks about his time at Western State, how much he learned, how many friends he made.

"I wonder," he says. "How will they wrestle the bear in their life?"

Maureen O'Hagan is a Pacific Northwest magazine staff writer. John Lok is a Seattle Times staff photographer. News researchers Gene Balk, David Turim and Miyoko Wolf contributed to this report.

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