This is a printer-friendly version of an article from Zip06.com.02/07/2018 06:00 AM
Judy Murray and Claire Bien recently began a new group that meets in a room at the Wilson Library in New Haven, once a week on Monday evenings from 4:30 to 5:30 p.m., for young people who hear voices, and want to understand and integrate that experience with their lives.
Using training they have received from the Hearing Voices Network (HVN) and their own personal experience, Murray, a school nurse who lives in East Haven, and Bien, a writer and editor who lives in Hamden, will provide these young people, 12 to 24 years old, who hear voices, with support early enough in their lives to improve their chances of leading fulfilling and productive lives. Learning about and participating in HVN could be life-changing for these young people who hear voices, a phenomenon that some researchers say occurs in up to 28 percent of the population.
The network encourages voice hearers to question traditional biomedical explanations, particularly if those explanations require the voice hearer to bury the voices with large, prolonged doses of medication with significant side effects. The voice hearers will be encouraged to develop coping and recovery strategies, with the support of people who will nod with understanding, rather than turn away in confusion and fear. The voice hearers will understand, over time, what kind of power they have when dealing with experts, and how to use their expertise when it comes to deciding how they will be treated. And for those who are interested, there is the option for political advocacy surrounding these issues as well.
Murray’s and Bien’s paths to this room in the library were very different, but both paths were marked by searing personal pain.
And both ended up in this room, in large part, because they are devoted mothers.
From Friendly to Harsh
From her early 30s on, Claire Bien heard voices.
Sometimes the voices were friendly, helpful, “akin to instinct,” like the time they gently told her about a copyediting error she had missed as she worked on a manuscript. But then there was the time she opened the windows of her New Haven apartment to enjoy the voices of children playing outside, as she was working on an article. She fell into a daydream about the child she and her husband might have someday. Then she heard one of the children, a boy, make fun of her, tell the other children that Bien was an alcoholic, and say “She’s craaaaaaaazy.” She closed the window, worried that the neighbors might have heard the children, and no longer felt like the neighborhood was a friendly, welcoming place.
The voices sometimes grew harsh and punishing, often during times of her life when she felt isolated, or stressed, or ashamed about something. Over the years, she tried medication, but sometimes the medicine made her feel worse, depressed and barely able to take care of herself and the son she eventually did have with her husband. The medication robbed her of her capacity “to feel, to love, to engage fully with the world,” she writes in her memoir. Then, one day before work, she walked out on to the 15th floor balcony of her office building, considered her options, and looked at the pavement below. She took hold of the railing, and swung one leg over.
As she so eloquently recounts in her memoir, she then thought of her son and wanted him to have a mother. She thought of a relative who took her own life, and the unending pain it imposed on the rest of the family. She pulled her leg back over the railing. It took many, many years, the support of family and friends, an intelligent and competent psychiatrist, and a great deal of self-exploration to back away from that ledge, literally and metaphorically, and arrive at the point where she is today, confident she can help herself, and help others who hear voices. Part of that recovery she attributes to support groups, including the National Alliance on Mental Illness (NAMI), which she says “gave me my voice,” and HVN, which she says “set me free.”
From Anger to Action
Murray is the mother Dan Kelson, who as a boy was happy, loving, and energetic. He always felt deeply for anyone experiencing misfortune, and Murray says he sometimes brought those people to their home if they needed shelter or food. He was diagnosed with bipolar disorder in his early teens. When he was 20, he began to hear voices. When he was 23, two weeks after he was released from a 10-day stay in a psychiatric unit, he killed himself in a way that was both painful and public.
Devastated by her son’s experience and convinced the medical system had failed him, Murray was furiously angry. She then vowed she would try to find a way to help others experiencing the same struggles. She found out about HVN, became a trained facilitator, and encouraged others to become involved by organizing events and advocating for the movement. Murray started several support groups to help others. She has worked for many years with older voice hearers, and worries that many of them have been beaten down by a system that often promotes a medicine-only approach, and burying the voices, as the only way to cope.
The idea behind HVN, an international movement that originated in Europe and was adopted in Connecticut only a few years ago, is that the voices should be understood, and integrated in the experience of the voice hearer, and that voice hearers cope much better when they have the support of a group of understanding people with whom they can discuss their experiences.
The group at the library is starting out small, and Murray says she hopes it will become a resource for young voice hearers who are being treated on an inpatient basis at a nearby hospital. Murray says her work with these young voice hearers has been a revelation.
“The young adults in the group are so enthusiastic to be able to share their experiences for the first time. Their voices go unheard within our traditional system where the preferred outcome is symptom reduction,” she says. “To be heard and have others validate that their experience is real for them is so powerful and productive toward recovery. “
Searching for Answers
Estimates of how many people hear voices vary. Some studies say five percent, others say that as much as 28 percent of the population may have heard voices at some point. Hearing voices, according to some of these studies, is more prevalent than left-handedness, Bien points out.
Albert R. Powers, a clinical instructor at the Yale University Department of Psychiatry and medical director of the PRIME Psychosis Research Clinic at Yale, explained why the estimates vary so much.
“These numbers are derived from different papers with different methodologies and in different populations. Some of those papers were slightly more liberal in their criteria, those closer to the 28 percent mark, which might include hearing one’s name in a crowd at some point in one’s life, whereas some might be more conservative, those closer to the five percent mark, which might only include those with repeated experiences while alone that have acoustic properties, for example,” he says.
Powers has been fascinated with these kinds of questions and issues since he was a student in Ms. Addario’s AP Psychology clas at North Branford High School in 1998. In the second or third chapter of his high school textbook he learned about which parts of the brain were in charge of processing visual information versus auditory information, how neurons fire, and what all of that means when it comes to perception.
“I remember thinking, ‘So this is how the magic happens,’” he says. But he still didn’t understand how “we make the leap from neurons firing to hearing my favorite piece of music, or my mother’s voice, or seeing my childhood home.”
Through his studies in college and graduate school, he began to understand how the brain combines information from different senses to make up a meaningful whole.
“It was only then that I realized there had to be a framework for understanding our senses, a way to bridge the gulf between firing neurons and the phenomenology of living in the world,” he says. He says one way to understand the brain is that it is “ a machine that tries to model what is around it by using what it knows already about the world and incoming sensory input.”
Thinking about it this way provides insight into not only everyday perception, but also how those processes can result in unusual experiences like hallucinations.
His recent work focuses on hallucinations themselves as an experience, not just as a part of psychosis.
“And that meant that we had to find people who had hallucinations but didn’t have psychosis; if the processes we wanted to investigate really underlie hallucinations, they should be there in people who have psychosis and in people who don’t,” he says.
Working with Philip R. Corlett, an assistant professor at the Yale University Department of Psychiatry, Powers has conducted numerous studies that shed light on why some voice hearers adapt and embrace the voices, while others struggle with them to the point where they become self destructive and suicidal.
One study, in particular, published in 2017 in Schizophrenia Bulletin, compared voice hearers who haven’t sought medical help with help-seeking groups. The non-help-seeking voice-hearers included clairaudients, also known as psychics, who experienced daily auditory messages. One of the goals of this study was to determine whether the similarities or differences between the two groups could guide treatment.
Working with the psychics has been a fruitful line of research, they say.
“One of the things we learned is that people who were non-clinical voice hearers, the ones we worked with, seemed to have friends and family and social networks who had similar experiences,” Powers says. “That suggested that sharing your experiences with a group might defuse some of the damage it might otherwise do to you as a person.”
The HVN groups, such as the one facilitated by Murray and Bien, are a good example.
“They go to a meeting, they share their stories and discuss different coping strategies,” Powers says.
“A problem shared is a problem halved,” Corlett adds. “The fear that you’re the only person in the world it’s happening to can be contained, if you hear stories of other people who are experiencing the same thing.”
They know that some in the HVN, particularly those who have had bad experiences in the medical system, see that medical system, and the people who are part of it, as part of the power imbalance.
“At points we disagree, or we agree to disagree,” Corlett says. “But because of the work we’ve done and the people we’ve worked with, we are tentatively taking steps toward working closely with the HVN movement, which is very open and pluralistic with regard to where voices come from, and what people can do about them.”
Angels and Aliens
Powers and Corlett say they were intrigued by the way psychics understood their voices. Some psychics explained that they believed that they were communicating with people who had passed on, or with spirit guides, or historical figures, or even extraterrestrials.
The non-help-seeking voice hearers also, for the most part, interacted with their voices at a much earlier age, and in a way that was often productive. The psychics heard their first voices, on average, at about 7 ½ years old, whereas those diagnosed with psychosis reported being an average of 22.9 years old when they first heard voices.
The psychics could often make the voices “occur by will, and “prevent them from occurring,” according to the published study. They were “more likely to identify a divine being as the voice source,” to say they were “protective,” and less likely to find them “bothersome.” The psychics reported voices between once a day and 10 times a day, while those experiencing psychosis would sometimes hear them three to six times an hour. Voice hearers diagnosed with psychosis also said the voices created fear or anxiety, and that they tried to resist them.
For the psychics, the voices seemed like “less of a burden and more of a gift,” Powers says.
Another fascinating element, he says, was that psychics often endorsed some degree of control, over when and where and how they heard the voices.
“We think it’s important to figure out how that happens, and what that means, according to the people who endorse that,” he says.
“One of the outcomes of meeting with others is gaining control of the voices,” Corlett says. “We think that has a lot in common with HVN.”
Powers and Corlett have since done other studies, and are planning more. They say psychics’ perceived ability to manage the voices holds great promise.
Learning, Sharing How to Cope
Bien says her work with HVN has validated the way she works with her own voices. She knows now she’s extremely sensitive to what she characterizes as energy. She took time to learn about her triggers, and now removes herself from situations where she feels vulnerable.
She learned some strategies from HVN as well, like how to put the voices off when necessary. Once she was working, doing the work of several people that particular day, and the voices started telling her how wonderful she was. Then, how special she was. Then, how she was going to save the world.
“At first I felt like, ‘Tell me more, tell me more,’” she says. “And then I was, ‘Wait, I have a job. I really can’t talk with you. I have to write this article and plan a pizza fest. I will talk with you later...’ And it worked. I learned through HVN that making appointments works. But it only works if you believe it.”
She says her strong sense of self, and her upbringing have benefited her as well.
“I knew the mean things the voices said about me were absolutely not true. And if they said mean things that were true, I would acknowledge that. It helped that I knew myself and was holding myself to be as honest as possible,” she says. “An innate sense of fair play was ingrained in us. I knew who I was. I knew who my family was. That strong sense of personal agency allowed me to say this is true, this is not true, and the voices could not argue with the truth.”
She says her experience does not hold for everyone, particularly for younger people who might not have a fully formed sense of identity, or for people who may have suffered from trauma or abuse.
More Than One Way
Kenneth Blatt, a psychiatrist in private practice who serves with Murray on the board of Advocacy Unlimited, a Connecticut non-profit that helps people with mental health recovery, adds that even those who have experienced trauma can learn to take advantage of what HVN has to offer.
“One of the basic tenets of healing trauma is being able to integrate different parts of ourselves,” he says. “That means developing a different relationship with the voices. The voices are a part of yourself, a part of you. So it’s important to develop a relationship with them. We have to come to terms with different parts of ourselves, we have to accept the parts of ourselves we don’t like. We have to accept that these parts come from experiences, and we have to start recognizing and being compassionate to parts of ourselves that we might hate.”
What Murray and other HVN faciliators like Bien do, he says, is to provide a safe environment for young people to talk about their sensations and beliefs.
“It’s a great relief that no one is calling them sick or disturbed,” he says. “By being curious and starting a relationship with the voices, it’s like coming to grips with another aspect of yourself.”
While that’s one approach, he says, there are others shared by those in the network.
“It’s not like there is only one way,” he says. “That’s very important.”
If you feel at risk for suicide, or know someone who might be, please call The National Suicide Prevention Lifeline at 800-273-TALK (8255). Or, visit suicidepreventionlifeline.org and scroll down to the bottom of the page where it says “Chat With Lifeline.” To find out more about the Hearing Voices Network group with Judy Murray and Claire Bien, contact Murray at 203-376-3905 or email@example.com. To find out more about Claire Bien’s memoir, Hearing Voices, Living Fully: Living with the Voices in my Head, visit clairebien.com. To find out more about Advocacy Unlimited, visit www.mindlink.org/index.html. To find out how to participate in studies relating to voice hearers, contact Powers at firstname.lastname@example.org or Corlett at email@example.com. To find out more about local mental health resources, visit www.zip06.com/section/mentalhealth.