It was a cold, clear blue-sky day in early 2014 as John Herold was standing in a friend’s driveway in Tacoma talking on the phone to Portland resident Kate Hill.
A little more than a year earlier, Herold had been hospitalized after going into what doctors labeled a manic state. He had huge amounts of energy, couldn’t sleep and was having unusual beliefs. He was also hearing voices. He had been on and off of psychiatric medication and considered himself bipolar, just as he’d been diagnosed.
Looking back at the experience now, Herold takes issue with how his thoughts and experiences were handled in 2013. After that year, Herold connected with Hill, who was involved with the Hearing Voices Network in Portland.
The Hearing Voices Network is a guiding organization and framework for thousands of support groups across the world designed for those who hear voices or have visions that others around them don’t see or hear; those experiences can include all five senses.
The groups provide a framework to empower and liberate people who have unusual experiences, and they aim to fight back against stereotypes and discrimination.
On that phone call with Kate Hill, Herold described how he could hear bells ringing and how he saw patterns and formulas in everyday things. Then, Hill asked Herold a simple question, but one that resonated deeply with him — because it wasn’t asked once during his year of mental health treatment.
Herold was used to sharing his story and being told he is bipolar. But instead of responding like that, Hill told Herold it sounded like he had a meaningful experience. Then she asked, “What does that mean to you?”
Seven years later, Herold can get teary remembering that conversation. It was the first time anyone had been curious about his experiences, instead of simply trying to suppress or medicate them away.
“I think for me, it was the beginning of a new life, a new community,” Herold said.
Days after the phone call, Herold was in Portland to visit Hill and other network facilitators. Since then, he has become the founder and director of Puget Sound Hearing Voices, and he’s trained network facilitators in Vancouver.
In the network discussions, people are often the most open they ever are, Herold said, as they seek to learn from each other’s experiences and possibly find metaphorical meaning in their voices or unique experiences.
“Sometimes I think mental illness isn’t having unusual beliefs, it’s believing they are meaningless,” Herold said.
Even PeaceHealth Southwest Medical Center, a hospital and traditional cog in health care, has incorporated the network into its mental health offerings. Teresa Kirchner facilitates that group. Kirchner said she believes the way America treats mental health is outdated, and PeaceHealth leaders agreed that alternative approaches are needed.
“In a lot of ways, the medical model is failing people,” Kirchner said. “Often times, you medicate this stuff. There is no solution. I just don’t think that’s true. … It’s an alternative to the emergency room. It’s an alternative to hospitalization. It’s an alternative to our current modes of treatment. It’s time to try something new, and we’re ready to be part of the solution.”
While the newtork is in many ways considered modern and progressive, Kirchner said it actually seems more fundamental than things such as electroconvulsive therapy or medication. The network was founded in 1987 by Dutch psychiatrist Marius Romme, science journalist Sandra Escher and Patsy Hage, a patient of Romme’s who heard voices.
“It’s so simple, because we’re not trying to fix anything,” Herold said. “It’s not like you go to the hospital and they don’t fix you, so you go to (network) groups so they can fix you. It’s that we let go of the idea that there’s something that actually needs fixing, and that maybe we need to explore and build community with each other.”
Herold and Kirchner said the network isn’t for or against psychiatric medication. There are people in network groups in Vancouver who take medication and consider themselves ill. There are also people who hear voices or have other unique experiences who don’t consider themselves ill.
Research has shown that hearing voices is much more common than the general public believes, and many people don’t consider the voices they hear to be a problem.
“I think there’s a tendency for people to judge those experiences simply because they’re outside the box,” Kirchner said. “They just feel unmanageable in some respects to outsiders, but I think when you’re the one experiencing it, you have a different take on that. It can be shifted, depending on what sort of pressure you get. If there’s oppression, then you’re going to try to oppress that experience versus peer respite.”
Peer respite is John McDonald’s favorite part of the network. McDonald is a co-facilitator of the National Alliance on Mental Illness (NAMI) Southwest Washington’s network group with Chiara Caballero.
“Having that space to be validated, no matter what your experiences are, for people to find meaning and explore what they’re experiencing, that is important,” McDonald said.
McDonald and Caballero said they like that the network doesn’t have an assumption of illness attached to it. The group’s inclusion at NAMI, which has mental illness in its title, shows how thoughts and labels in mental health care are changing.
“With NAMI, mental illness is in the title,” Caballero said. “With Alcoholics Anonymous, you’re admitting there’s something going on, let’s work on it. With this, some people don’t believe they’re sick and that’s OK, as well.”
McDonald and Caballero work at the NAMI office in downtown Vancouver as program leaders. Since McDonald and Caballero aren’t spending time fighting themselves, they can focus on their lives and careers.
“Most of the office here has some kind of mental health issue, and we’re able to run an organization,” Caballero said.
Ren Autrey, who founded the Hearing Voices group at Community Voices Are Born (CVAB) in Vancouver, said she has been hearing voices since she was young. At that time, her family considered it connected to her Native America heritage.
“You’ve got some of your grandmother,” she said she recalls her family saying.
“It was a normal part of what made me different,” Autrey said.
Eventually, hearing voices and struggles with her mental health, in part, led Autrey into homelessness. At that time, Autrey said she didn’t know how to best handle the voices and converse with them in the proper way. She was easily angered by the voices. The network helped teach her how to push back against bad voices or thoughts and make sure she didn’t cross boundaries and violate others’ space. She learned skills to help her live with those experiences.
Autrey is now housed and works as a health connect hub coordinator for Southwest Washington Accountable Community of Health in Vancouver. She said a large part of her success has come because she no longer feels hampered by psychiatric labels.
“It’s helped me put those labels in perspective,” Autrey said. “They didn’t have to define me, but they can be part of who I am, which is something I’m OK with. They’re part of me.”