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Spokane, Washington  Est. May 19, 1883

Schizophrenia a widely known but poorly understood mental illness

For Sasha Washburn, having schizophrenia means spending a lot of time explaining herself to other people.

Washburn, a veteran who now works part time at Eastern Washington University, has lived with her mental illness for 13 years. Though her symptoms are now well-managed, she needs a lot of time to process her emotions and sometimes has to skip social events at her church.

“I appear fine, so people don’t understand why I’m not there,” she said. “It’s constant, explaining why you’re not doing things that everybody else is doing.”

People with schizophrenia say the illness is poorly understood by many, though it’s among the more common serious mental illnesses. It’s most likely to turn up in the newspaper or on TV associated with something negative and often violent, like in Spokane recently when a man with schizophrenia was accused of killing his mother.

The National Institutes of Health says about 7 or 8 people in 1,000 will have schizophrenia in their lifetime, while other health groups put the number slightly higher, at 1 percent.

That puts schizophrenia in a strange place. It’s common enough that most people have heard of the disease and can rattle off a few symptoms – delusions, paranoia, hallucinations – but not so common that most people personally know someone with schizophrenia.

Many Spokane residents who have been diagnosed say the general public tends to think of them as dangerous or beyond repair, incapable of living a normal life.

Washburn, who is open about her diagnosis, said she’s lost friends because of it.

“Fear is a huge one. People are really scared. A lot of them don’t want to talk about it so they just avoid me,” she said.

Nelson McAlister has lived with schizophrenia for more than 40 years, and has spent the last 11 years in a group home in the West Central neighborhood. (Kathy Plonka / The Spokesman-Review)
Nelson McAlister has lived with schizophrenia for more than 40 years, and has spent the last 11 years in a group home in the West Central neighborhood. (Kathy Plonka / The Spokesman-Review) Buy this photo

Getting a diagnosis

Washburn’s journey with schizophrenia began in 2002. She was 28 and in a master’s program in creative writing at EWU after serving six years in the Army.

She began feeling anxious and paranoid over the course of the quarter. Once, she remembered being frightened by a packet of poems the class was assigned to read.

“I had pieced together different words in the different poems as some sort of conspiracy theory against me,” she said. “That was the first kind of indicator that it was getting out of hand.”

Washburn said that since childhood, she’s been able to see auras, which she described as an energy around people or animals.

“I thought it was a special power like X-Men, having some sort of special power to sense who someone was,” she said.

But during the fall quarter of her program, the auras started intensifying. She believed people in her class were trying to molest her through their auras.

Washburn went to get help with encouragement from her mother and sister, but said she was skeptical.

“I didn’t think there was anything wrong with me. I thought there was something wrong with everybody else,” she said.

In February 2003, psychiatrists diagnosed Washburn with schizoaffective disorder – a combination of schizophrenia and a mood disorder, such as depression.

Most people with schizophrenia will be diagnosed in their late teens or twenties, said Dr. John Tran, the medical director at Frontier Behavioral Health. Men tend to start showing symptoms by their early twenties, while women often take a few years longer, he said.

The illness has a genetic component but is influenced by environmental factors, Tran said. Brain scans of people with schizophrenia have shown abnormalities in brain circuitry, which may explain hallucinations, as well as imbalances in neurotransmitters and brain chemicals, including dopamine and glutamate. It’s still unknown whether some abnormalities are the causes of schizophrenia or the result of the illness, since scans tend to be done on chronic patients.

The precise causes of the illness are hard to pin down, Tran said. It’s not as simple as identifying a single “schizophrenia gene,” because scientists believe expressions and variants in multiple genes play a role in the illness. Schizophrenia often runs in families, but trauma, drug use and other individual circumstances may influence when and how symptoms present themselves.

Symptoms may begin with bizarre behavior caused by delusions or hallucinations. Many people with the disease don’t realize something is wrong until a family member prompts them to seek help, he said.

“It’s somewhat devastating for many folks,” Tran said.

Simona Gellner was diagnosed with schizophrenia at 23 and has had periods of stability as well as periods of suicidal thoughts and addiction. Now she works as a peer counselor helping others with mental illness. (Kathy Plonka / The Spokesman-Review)
Simona Gellner was diagnosed with schizophrenia at 23 and has had periods of stability as well as periods of suicidal thoughts and addiction. Now she works as a peer counselor helping others with mental illness. (Kathy Plonka / The Spokesman-Review) Buy this photo

Symptoms and treatment

Most people associate schizophrenia with paranoia and hearing voices, but the illness can take many forms. Common symptoms include disorganized thinking, usually detectible in speech, and negative symptoms, such as reduced emotional expression or less interest in doing regular activities.

For Washburn, those symptoms made it nearly impossible for her to care for herself or get up in the morning. She tried a variety of medications over the years following her diagnosis, but was often lethargic and unfocused. She was fired from several high school teaching jobs for being late because she had trouble getting up in the morning and showering. In the past two years, she said, she’s finally reached a place of stability where she can work part time.

Many people who are now living independently went through months – even years – of hospitalization, suicidal thoughts and homelessness.

Psychiatrists diagnosed Marieka McPhee during her second year of nursing school at Boise State University. She dropped out of school when her symptoms made learning too difficult and struggled to accept that she wouldn’t be able to pursue a nursing career.

Eventually, she began using opioids – in part to cope with her symptoms, and in part because she was hoping to overdose and die.

“I did not see a future for myself at that point,” she said. “I was dealing with psychosis for a while and really trying to resist the easy way out.”

Drug use complicates schizophrenia. For some people, drinking alcohol or smoking marijuana in their teens can intensify or trigger psychotic episodes. Others begin using drugs after symptoms appear as a way to cope. McPhee said she’s met many people who relapse into using drugs because their prescribed antipsychotic medications aren’t working or become unaffordable.

Treatment for schizophrenia usually includes a combination of antipsychotic and other medications to control symptoms like delusions, as well as therapy to give people coping skills to deal with anxiety and negative thoughts.

Michelle Schlienger was diagnosed with paranoid schizophrenia at 21 and initially struggled to accept it.

She believed her life was over.

Now 60, she says she’s learned to thrive through writing poetry and uses creativity to deal with the negative voices that sometimes tell her to hurt herself.

“I’d tell my voices to go to daycare. I’d say, why don’t you go to college? You’re really bothering me,” she laughed. “You have to have a sense of humor with schizophrenia.”

Finding medication that works with tolerable side effects can be a long process. Learning to use skills from therapy effectively also takes time.

“Recovery from a mental illness is possible,” said Simona Gellner, who has schizoaffective disorder and works as a peer counselor.

Gellner was diagnosed at 23 after a suicide attempt landed her in the hospital. She had struggled for several years with increasing anxiety and hearing voices telling her to hurt herself.

At the time, a psychiatrist told Gellner’s parents she likely didn’t have long to live.

“He did not have a good prognosis for her,” said Simona’s mother, Mary Gellner.

Estimates of the number of people with schizophrenia who attempt or commit suicide vary, but it’s generally agreed that those rates are much higher than for the general population. A 2010 review of 51 studies, published in the Journal of Psychopharmacology, estimated the lifetime suicide rate for people with schizophrenia at about 5 percent.

Simona Gellner said she went through periods of stability, as well as periods of intense suicidal thoughts and opiate addiction. Now 42, she’s nine years clean and living in her own apartment with her cat, Misty, a large Siamese who she says runs the house.

As a peer counselor, Gellner works to help other people cope with their mental illnesses through plans for recovery and self-care. She receives public health insurance, but earns enough at her part-time job that she’s stopped receiving disability payments.

“She never has given up on herself … which helps us because we never gave up on her,” Mary Gellner said.

McPhee also has found a place of stability helping others. She leads support groups through the Spokane chapter of the National Alliance on Mental Illness. As a facilitator, she helps people understand how brain chemistry plays a role in mental illness.

“The name is misleading – mental illness. Mental makes you think mind, like you can change it,” she said.

Ketema Ross spent seven years at Eastern State Hospital after pleading not guilty to assault by reason of insanity. Now advocating for other patients and people with schizophrenia, he talked about his experience at his home in Spokane on Wednesday, July 13, 2016. (Kathy Plonka / The Spokesman-Review)
Ketema Ross spent seven years at Eastern State Hospital after pleading not guilty to assault by reason of insanity. Now advocating for other patients and people with schizophrenia, he talked about his experience at his home in Spokane on Wednesday, July 13, 2016. (Kathy Plonka / The Spokesman-Review) Buy this photo

Seeking support and stability

Arriving at a stable place is different for everyone. Tran estimates about one-third of his patients will need lifelong support in a group home or assisted living facility to perform tasks like paying bills, while another third will be able to live independently but may struggle to hold a job. The final third are able to work and respond well to treatment, with few or no lingering symptoms, he said.

Nelson McAlister has lived with schizophrenia for more than 40 years and spent the last 11 in a group home in West Central Spokane. He was diagnosed when he was about 20 and said he had to spend some time mourning his aspirations to be a gym teacher.

McAlister hasn’t been able to hold a job because of his illness and relies on disability payments, but his days are far from empty. He loved gardening as a kid and now tends beds around the home, growing broccoli, zucchini and pumpkins to carve for neighborhood kids come Halloween.

“People in mental health do have gifts. Every person has a gift in their life they can access,” he said.

McAlister also has found community through the Evergreen Club, a community center for people with mental illnesses run through Frontier Behavioral Health. It operates a cafe, a thrift store and a business unit that provides jobs where members can volunteer. That helps train people who might someday enter the workforce, but it also provides people with a response when they’re asked what they do.

“It helps gives people identity and self-esteem,” said Sue Grant, the director of the club.

McAlister said he enjoys having a place to go during the day to socialize and meet other people who won’t judge him for having schizophrenia.

“It’s a big network,” he said.

Supportive family and friends can go a long way toward mitigating stigma. But when asked what an average person on the street thinks of schizophrenia, many people with the illness say they’re incorrectly assumed to be violent or a danger to others.

People with schizophrenia who are accused of violent crimes, as in a recent Spokane case where a man allegedly killed his mother, are the only time most people read about people with the illness. Tran said media reports on suspects in mass shootings and murders also tend to play up a history of mental illness over other factors, like past history of domestic violence.

That leads to a false perception that anyone with schizophrenia is capable of committing horrific violence.

“I’m the only person that I’ve ever harmed,” Gellner said. Others said their hallucinations are likely to make them withdraw or shut down, and have nothing to do with hurting other people.

Ketema Ross knows that struggle better than most. In 2007, he was arrested after assaulting his neighbor in Pullman, sincerely believing he was working for the government and had to stop a terrorist attack by order from the president.

The attack came several years after Ross was diagnosed with schizoaffective disorder. He’d been a student at Yale Law School when he had his first psychotic break, but dropped out soon after and struggled to accept his illness.

Ross pleaded not guilty by reason of insanity to the assault and was sent to Eastern State Hospital, where he spent seven years – far longer than he would have served in prison if he’d pleaded guilty.

He chronicled the experience in an article for Politico last year, writing, “With the way our society operates, I may have been better off had I been motivated by evil, anger, greed or malice and been found guilty. Society understands malice. We understand retribution. But we do not understand mental illness and are often unable to see the humanity in those with mental illness.”

More than a year after he won the fight to be released from the hospital, Ross won his final legal battle in February, freeing him from ongoing hospital supervision.

Ross is open about his experience because he wants to challenge the idea that acts of violence in the past make someone worthy of fear or constant supervision.

“I know what my symptoms are. I know what my illness is. I’m taking steps to monitor and manage those symptoms. Am I really all that different from you, who may or may not be aware of those symptoms and problems that you have?” he said.

He hopes to get a job doing advocacy work for other people with mental illnesses.

“It’s a hard fight. It’s a really hard fight,” he said.

Tears welled in his eyes as he recounted his release from supervision: “I want to give people hope if I can.”

Gellner, too, is open about her mental illness because she wants to challenge people’s ideas of what it means to have schizophrenia.

“A lot of times people are afraid of people with schizophrenia and maybe don’t think that people with schizophrenia can have a quality of life or maybe even hold a job,” she said.

She paints at home and said exercising regularly and eating well help her stay stable and happy. Her parents said she’s also an avid cook who closely guards her grandmother’s secret family recipe for a pepper-based steak rub.

“She’s not a diagnosis. She’s more than a diagnosis,” Mary Gellner said.

Washburn is now living with her mother, sister and niece and has found the right medications to keep her symptoms at bay. She leads peer support groups and encourages other people to talk about their mental illnesses, the same way people talk about diseases like cancer.

“It can be talked about. It doesn’t have to be something that you’re ashamed about,” she said.

Sasha Washburn works part time at EWU. Her symptoms of schizophrenia are well-managed but she says she frequently has to explain herself to others. (Kathy Plonka / The Spokesman-Review)
Sasha Washburn works part time at EWU. Her symptoms of schizophrenia are well-managed but she says she frequently has to explain herself to others. (Kathy Plonka / The Spokesman-Review) Buy this photo