A program called 'In Our Own Voice' uses personal stories to reduce stigma of people living with mental illness.

As dusk descended on Seattle, Gretchen Hawkins stood in a tiny, dimly-lit closet and had a simple realization: There were no clothes on the hangers.

Her new one-bedroom apartment was barren. Overcome by a sense of omnipotence, Hawkins had dismantled her previous place and dropped off her possessions at Goodwill. She no longer needed them — she was the Queen of Sheba, and a palace awaited her in Egypt.

As a result, her two sons called to say they weren't coming home from their father's.

But in that closet, as she leaned against vacant shelves and pressed her head against the wall, she had a moment of grace.

"I was just thinking about my kids and the trail of destruction I'd created," Hawkins said. "It all started playing in my mind, and I thought: 'This is not who I am. I don't do this kind of thing. What is this all about?' I really feel like it was divine intervention."

She sobbed and a wave of nausea brought her to her knees. She called a family member, who drove her to Harborview Medical Center and left her on the curb outside. Five hours later, she walked away with a bottle of pills, a voucher for a cab and a diagnosis of bipolar disorder.

That was more than 10 years ago.

These "Dark Days" are part of the story Hawkins tells as a presenter for the In Our Own Voice (IOOV) program, where she gives audiences an insider's perspective on what it's like to live with mental illness.

The program involves 60- to 90-minute presentations offered by the National Alliance on Mental Illness (NAMI), and it attempts to dispel stereotypes, break down stigma and offer hope.

"I'm very passionate about it," said Sandra Douglas, an IOOV trainer and coordinator for NAMI Eastside. "It makes a huge difference, because every time we speak to even the smallest group, there's a ripple effect that goes out into the community."

Telling the story

IOOV presenters go to a wide range of venues, from high schools, universities and churches to health agencies and businesses.

In each presentation, two speakers share their stories of living with mental illness in conjunction with a video broken into five sections or "chapters."

Hawkins' first chapter, "Dark Days," means describing her worst manic episode, when she walked the streets of Seattle feeling invincible, throwing her arms open to stop traffic.

According to NAMI, more than 10 million Americans have bipolar disorder, which can cause dramatic shifts in mood and oscillations between mania and depression. Severe episodes can cause hallucinations and delusions.

After losing contact with her kids and attempting suicide, Hawkins sought help. During Hawkins' IOOV presentations, this leads her to the chapter titled "Acceptance."

Things started to come into focus as soon as she got her diagnosis; bipolar disorder was something familiar. A family member had it, and memories of hushed discussions about the family member's medication — lithium — are still vivid.

"I remembered as a kid seeing this pill that looked all speckled, like a mineral," she said. "And they'd be whispering in the kitchen at dinner, saying, 'Did you put the pill on the plate?'"

Next come chapters on "Treatment" and "Coping Strategies," where Hawkins discusses medication, therapy, seeking support through NAMI, and what she does to handle waves of depression and stay her course.

Term limits

Hawkins cringes when she hears the word "crazy." To her, that signifies a deep misunderstanding of what it is to live with bipolar disorder.

"That term is huge to me," she said. "It's an illness. I don't think you would call someone who had cancer 'crazy.' It requires medication, just like a diabetic requires insulin."

Compassion is another term that Hawkins wants her audience to understand. Through her story, she aims to educate attendees so they walk away with a deeper perspective on mental illness: That it is a real brain disorder, that people can recover from it, that it takes courage, and that empathy and grace and support make all the difference.

Lyndsay Campbell, former program manager for NAMI Seattle, who has been diagnosed with obsessive compulsive disorder, said it's also about challenging assumptions and humanizing something that can seem scary.

"A lot of people have an idea in their head of what people look like with mental illness," Campbell said. "It's interesting to see people's faces when these very normal individuals walk into a room. Breaking down stigma is a really important thing."

Last year, NAMI Seattle reached a total of 1,385 people through 48 presentations.

For Hawkins, one of the most daunting places to tell her story is in law enforcement agencies, which she does as part of Crisis Intervention Training (CIT) with King County. Hawkins said during her manic episode a decade ago, she had a violent encounter with police that left her injured, bruised and with post-traumatic stress disorder.

Susan Schoeld, of the county's Mental Health, Chemical Abuse and Dependency Services Division, said the goal of bringing presenters to CIT is to give law enforcement a chance to interact with people who live with mental illness outside of crisis situations, and to give people like Hawkins a chance to start a conversation about what was and wasn't helpful during a crisis.

"Often, law enforcement are engaging with people during the worst times of their lives and only get to see a small, brief glimpse into this person and their experience," Schoeld said. "They don't get to interact with them when they are well or not in crisis, and it tends to influence perspective. Our goal is to broaden that perspective."

Hawkins grappled with the idea of presenting for law enforcement officials, afraid of how she would feel walking into a room of officers. The first time she went, she froze and left out the part of her story that involved cops.

"I was really disappointed with myself," she said. "I beat myself up forever."

If speaking to law enforcement officials is the most challenging aspect for Hawkins, the NAMI program Family-to-Family, where she gets to talk to friends, family members and caretakers of those with mental illness, is the most rewarding. IOOV presentations can instill a great deal of hope.

"They are often inspired by the recovery process and by seeing someone's trajectory," Hawkins said. "They see that during the recovery period, there are times where you fall, and [they learn] just to be tenacious and resilient."

Demonstrating that recovery is possible is even more urgent at facilities with inpatient services, where those in crisis are hospitalized. Campbell and Douglas said they regularly send presenters to local hospitals, a location that takes on a certain kind of gravity.

"If you are sitting in the hospital, and your life has been flipped upside down, it shows you that there is life beyond this," Douglas said. "Hope is super important."

Recovery in action

Ask anyone involved with the program, and they'll use a range of words to describe what IOOV means to presenters, from "empowering" to "therapeutic" to "recovery tool."

People apply to be IOOV presenters and undergo an intensive, weekend training where they learn the format, practice telling their stories and receive feedback.

"For many, it's the first time they've heard themselves say their story out loud, in a structured way," Douglas said. "Saying it makes it less scary and allows you to process, because how it goes in your brain and what it sounds like coming out are totally different."

Describing a struggle with mental illness, even in front of peers who share that struggle, can elicit fear. But Douglas and Campbell see people overcome that to garner newfound confidence and self-esteem.

Being a presenter has even served as a stepping stone for entering the workforce after long periods of unemployment.

For many, it's also the first time they've grasped — in a tangible way — that they are not alone.

Hawkins got involved with IOOV after seeing a presentation at a conference, where she watched presenters be candid about their mental illnesses.

"I was so moved by it — I was just crying all the way through," she said.

She knew then she'd found her venue. Years later, being a presenter has played a huge role in Hawkins' continued recovery.

"It's been incredibly healing," she said. "The struggle continues, but it's lessened a lot, by people who are so touched by the program, by the gratitude they share and the hugs I get afterward and the compliments about the courage I have: It's very heartfelt, encouraging and strengthening."

No matter how many times Hawkins tells her story, it's always difficult.

"There's vulnerability in the story," she said. "As long as I've been doing it and as long as I've been in counseling, there's still a lot of shame."

But as she moves through the IOOV presentation's chapters, she arrives at the fifth and final one: "Successes, Hopes, Dreams."

That means pursuing a master's degree in transformational leadership at Seattle University. It means a plan to work with women and kids affected by mental illness. It means reconnecting with her sons. And it means conjuring the courage to tell her story. In her own voice.

by Rianna Hidalgo

Republished from Real Change