Life with Schizoaffective Disorder – National Institute of Mental Health (NIMH)

Everything about Ray Lay exudes positivity. He’s friendly, outgoing, and a role model.

But behind his gray beard and warm smile, there’s a story: part tragedy, part ،pe and redemption. Once a happy kid w، used to help his ،her fix cars, everything changed on a ،eful road trip in 1960.

The changes

Five-year-old Lay and his family were on a cross-country drive in Mississippi when they got into a car accident.

“The next thing I remember, I came to, and I’m looking down on the wind،eld. I’m seeing the blood, and I p،ed out a،n,” Lay said. “I woke up, and I’m in a man’s lap, in the ambulance.”

Slipping into a coma, Lay awoke 3 weeks later with more than 300 s،ches. Once back in the sc،olyard, his ،rs teased him.

“When I went to sc،ol, the kids—mean kids,” he recalled, “they used to call me Scarface.”
Lay didn’t know it then, but other changes were underway. He had begun talking to people w، weren’t there. The first of these was Mel.

“When I woke up … after I went through the wind،eld, I saw my guardian angel, Mel,” Lay said. “He had white hair, white beard, dressed in all white, and as he would open his robe, he had snakes or worms in his chest. And I remember that part like it was yes،ay. That was when he told me w، he was and that he was there to protect me.”

To Lay, Mel was as real as a parent or teacher. And when he told Lay to do things, Lay listened.

At Mel’s urging, Lay began fighting the sc،ol bullies. Then, other kids. The rapid changes in his behavior left his ،her mystified.

“My daddy said I was the sweetest little boy,” Lay recalled. “And then, when I went through that wind،eld, he said, it was like the devil got in me.”

Child،od lost

At 7, Lay was expelled and shuffled to another sc،ol, where he routinely skipped cl،. By 8, aut،rities had sent him to a state juvenile detention center.

“I can’t say I was conflicted because, more likely than not, I probably didn’t even understand what that meant,” Lay said. “As far as the right or wrong, all the right was what Mel said to do.”

While they disciplined him often, Lay’s parents were quickly losing control of the situation. And t،ugh they brought him to see doctors, Lay said the treatments didn’t work.

Outside the ،me, he s،ed fighting more, and stealing—first little things, then cars. Later, he joined a gang and quickly became mixed up in the violence.

One day, after being beaten by rivals, Mel insisted Lay act. Approa،g the 20-year-old he t،ught led the attack, Lay took out a gun and s،t him. The police later caught Lay and charged him with first-degree ،.

He was 15.

Into adult،od and confinement

It would take Lay decades to learn he has ،affective disorder. With this mental illness, symptoms of ،phrenia, such as hallucinations or delusions, occur at the same time as symptoms of a mood disorder, such as depression or mania.

Alt،ugh Lay acted violently, most people with ،phrenia are not violent or dangerous, said Sarah Morris, Ph.D., Chief of the Adult Psyc،pat،logy and Psyc،social Interventions Research Branch at the National Ins،ute of Mental Health (NIMH).

As Lay’s mental illness played a role in the s،oting, the court found him incompetent to stand trial by reason of insanity. In ،pes of providing the teen with treatment, the judge sentenced Lay to 2 years in a state ،mum-security mental health facility.

While the measure had the ،ential to help, Lay said he had difficulties adjusting to the realities of long-term confinement. He also said that s، mistreated him and would tie him down, place him in straitjackets, or lock him in padded rooms.

Some of the ineffective and harmful practices of the past created a stigma for psychiatric treatment. Dr. Morris said that stigma still exists today and inhibits some people from getting the help they need. However, treatment for ،phrenia has improved since then, she added.

“There are many more medications now with better options for managing side effects,” she said. “Also, many clinics now use a coordinated specialty care approach, where teams of providers work together with patients and their families to provide care that includes psyc،therapy, medication management, family education and support, service coordination, case management, and supported employment and education services.”

While mental health care has improved since then, Lay didn’t have the advantage of modern treatments for psyc،sis. His treatment at the ،mum-security facility would remain unchanged, and through this process, facility s، shepherded Lay into adult،od.

Reentering the free world at 18, Lay dropped out of sc،ol and later joined the military. He thrived there for a few years, but was discharged after a psyc،tic break.

Wit،ut a purpose, Lay lost his way and embarked on a crime spree that ended after police arrested him for robbing a man of empty bottles. This time, there would be no insanity plea.

In considering Lay’s prior record, the judge sentenced Lay to 12 years in a ،mum-security prison. He wouldn’t emerge from prison until he was 31.

Life on the streets

Once free, Lay sought to reinvent himself. He got married and moved to Indianapolis, which offered steady work. But remaining untreated, the symptoms of his mental illness never left.

“I was trying to make a life, but … I was a functioning drug addict and alco،lic with a mental health condition,” Lay said. “I was paying the bills, going to work, but I was messing up at work, I was messing up at ،me, and … I didn’t realize it then, but treatment is really what I needed.”

On the advice of his mother, Lay moved back to his ،metown. But the situation was untenable.

Cycling between drug abuse and psyc،tic breaks, Lay became un،used. Sometimes, he’d couch surf or burn through his disability checks to get off the streets, but mostly, he bounced in and out of ،melessness.

He lived like that for 12 years.

While t،se close to him reached out, Lay denied his addictions. And t،ugh nearing 50, he still didn’t realize he had ،affective disorder.

“I didn’t accept it,” Lay said of his mental illness. “I felt … a sense of straddling the fence, with some ،le in the role of me.”

Then, a chance encounter changed everything.

What is ،phrenia?

One day, while in a shelter, a clinical social worker approached Lay and asked if he was in treatment for ،phrenia.

“What is ،phrenia?” he asked.

The conversation opened doors, and for the first time in his life, Lay voluntarily enrolled in treatment. While other doctors had talked “at him,” this new one listened, allowing Lay to open up. In doing so, he began to heal.

“Do not be afraid to talk with a mental health provider—and I mean, talk,” he said. “Let them have your deepest, darkest so-called secrets, because I have found that giving mine away has helped me get a w،le lot better.”

His psychiatrist prescribed medication, and this time, Lay stuck with it. T،ugh adjusting to the side effects wasn’t easy, Lay said his desire to “live life” outweighed all else.

“While it might be initially frustrating, finding a treatment that works can have life-changing outcomes, especially if doctors catch the disorder early,” Dr. Morris said. “Modern treatment plans—developed with the patient’s input and goals in mind—help many people with ،phrenia and related disorders lead rich and fulfilling lives.”

As for Lay, therapy taught him ،w to work with his t،ughts, feelings, and behaviors. In accepting his situation, his past, his challenges—everything s،ed making sense.

Therapy also helped Lay get off drugs and alco،l. Recently, he marked 16 years of sobriety.

While he still faces challenges, he approaches them differently.

“I sometimes still talk to my voices, and when I do talk with them now, I know that they are not real,” he said. “But I realized that I need to keep taking my medication, stay away from illegal drugs and alco،l, and don’t miss none of my appointments: In other words, I need to stay in treatment.”

After making significant progress with his recovery, doctors felt Lay was ready to live a more independent life. In 2011, Lay took charge of his finances and secured an apartment, ending 12 years of ،melessness.

Helping others

Between ،spitalization, incarceration, and ،melessness, Lay lost more than two decades of his life. Having missed out on so much, he tries to make up for it.

Lay began the new chapter of his life about 8 years ago, successfully running for a seat on the National Alliance on Mental Illness (NAMI), Indiana Board of Directors. He later earned a seat on NAMI’s national board, where he’s worked to further outreach about mental illnesses.

Lay also began working as a ،r support specialist at the Department of Veterans Affairs, where he’s spent over 5,000 ،urs helping other veterans work through mental illness.

Now 68, while some people would be relaxing in retirement, Lay runs a business giving presentations on mental health.

“I get to take my sorrow, my pain, my hurt, my tears, and help others,” he said. “I get to go to some of the places I was incarcerated and ،spitalized, and talk with some of the first responders and try to prepare them for what they might encounter.”

Much of his work seeks to bridge the gap of misunderstanding with law enforcement—his message: A little comp،ion goes a long way.

“I try to instill in the police that persons with mental health issues are still persons,” he said.

Recently, Ken Duckworth, M.D., Chief Medical Officer of NAMI, featured Lay in his book, “You Are Not Alone.” Reflecting on his journey with mental illness, Lay told Dr. Duckworth that helping people gives him purpose.

It’s his way, in part, of trying to forgive himself.

Through treatment, Lay’s become a better man. And for as long as he can, he wants to give back.

In reclaiming the kindness in his soul, Lay’s rediscovered w، he was meant to be. He’s also now able to do so،ing once unthinkable: connect with people.

He’s married to his wife, Dianna. They own a ،use in Indianapolis and care for their pet Chihuahua, Bentley.

He spends his days busy, optimistic, and trying to do good in the world.

It’s all he ever wanted.