Wednesday, January 22, 2014

Eleanor Longden - Why I Thank the Voices in My Head - Video, Essay, and Responses


I posted this video of Eleanor Longden talking about her experience hearing voices when it first showed up as a TEDx Talk. Her talk was the subject of a TED Weekends edition on Huffington Post.

Along with her original TEDx talk, there is an accompanying essay by Longden and 10 responses from other mental health professionals and neuroscientists.

I want to post the TED video and her new essay, then I will offer links and introductory paragraphs to the 10 responses posted at Huffington Post.

Why I Thank the Voices in My Head

A New Voice In Mental Illness

Eleanor Longden
Posted: 08/23/2013

A few months ago, a colleague of mine brandished an article in front of me with a rather bemused expression. "Read this!" he said, "I'd never have believed it." It was a piece about a man who hears voices. Intrigued, I began to read:

"The voice is identified as Ruah... the Old Testament word for Spirit of God. It speaks in a feminine voice and tends to express statements regarding the Messianic expectation... It has spoken to me sporadically since I was in high school. I expect that if a crisis arises it will say something again. It's very economical... It limits itself to a few very terse, succinct sentences... I have to be very receptive to hear it. It sounds as though it's coming from millions of miles away."

The reason for my colleague's surprise wasn't so much the content (he's a psychologist and is well accustomed to accounts from people who hear things no one else can). Rather, it was who was relating their encounter with this "tutelary spirit" that surprised him. Because this wasn't a report from a distressed, disorientated psychiatric patient; they were the words of award-winning, visionary author Philip K. Dick whose works, amongst others, inspired the movies Blade Runner and Total Recall. To me, this wasn't particularly surprising; why shouldn't someone of accomplishment and renown also happen to be a voice-hearer? But to my colleague it seemed to present a puzzling, almost unsettling, dissonance. And, to an extent, I can empathize with his surprise. After all, voice hearing is closely entwined with schizophrenia (with all the sinister connotations that this controversial diagnosis implies). And in the popular imagination, voices are commonly linked with derangement, madness, and mental corruption. As such, many contemporary voice-hearers inhabit hostile territory -- it's an experience that is literally marinated with fear, suspicion, and mistrust.

Yet despite these florid associations, psychiatry has long recognized that voice hearing features in a range of non-psychotic mental health difficulties, particularly trauma-based conditions like post-traumatic stress and the dissociative disorders. Perhaps more unexpectedly, research also suggests that approximately 13 percent of people with no record of psychiatric problems may also report voice hearing at some point in their lives. In itself voice hearing is an absorbing topic -- conjuring the nuances of perception and the nature of self -- and has alternatively been feared, reviled, celebrated, and consecrated, and forensically scrutinized within such diverse specialties as psychology, neurology, anthropology, theology, medical humanities, and cultural studies. Furthermore, accounts of voice hearing have been documented throughout human history: recounted by a wide array of pioneers, geniuses, rebels, and innovators that span across the centuries -- and also by normal, unexceptionable people like myself. You see, I'm a voice-hearer too.

It was the delirious, frenzied depths and exhilarating rewards of my own voice hearing voyage that would eventually take me to the Long Beach stage for TED 2013. Over the years, my voices have changed, multiplied, terrorized, inspired, and encouraged. Today they are an intrinsic, valued part of my identity, but there was also a time when their presence drove me to delirious extremes of misery, desperation, and despair. They brought me cringing and rocking to a psychiatric ward and pulled me down into the bleakest depths of madness; yet they would also lift me up to help me pass my University exams and ultimately elevate me to discover fundamental, healing truths about myself. The evolution of this understanding -- and the remarkable privileges and terrible penalties it incurred -- form the basis of my talk and accompanying TED book, Learning From the Voices in My Head.

Sharing my experiences so publicly could have felt overwhelming, but at every step the solidarity of friends and colleagues in the International Hearing Voices Movement fortified and sustained me. This organization has taken huge strides to reclaim voice hearing as a meaningful human experience; one which, for many of us, embodies figurative, emotional metaphors that communicate compelling information about pain and conflicts in our lives. This is not about pathologizing voices as symptoms; rather it is about understanding, accepting, and reclaiming them. In my own pilgrimage to recovery, it was learning to see the voices in more respectful, compassionate ways -- as adaptations, survival strategies, and representations of emotional pain - that made my healing possible. After years of shame, horror, and heartbreak, I finally made peace with my voices which, fundamentally, meant making peace with myself. And it was this framework that empowered me to take to the TED stage; not as an ex-psychiatric patient with a 'bad brain,' but as a proud and maddened survivor with an assortment of valuable and valued voices. In fact, at the end of my talk June Cohen, one of the conference's wonderful co-hosts, came onto the stage and asked me, with a respectful interest, whether I still hear voices. For a split second I hesitated, wondering whether to feign 'normal' and play it down with an airy "oh, not all that much now." Instead I opted for the truth: "All the time," I said cheerfully, "In fact I heard them while I did the talk... they were reminding me what to say!" Pride, empowerment, and the support to listen to one's voices without distress should, I believe, be a natural right of everyone who hears voices. So too, the right to freedom, dignity, respect, and a voice that can be heard.
 * * * * *

Here are the 10 responses, in no particular order.

'Learning' Our Way to Mental Healing

Patric K. Stanton  

Watching and hearing Eleanor Longden talk about her experiences of hearing voices may, for many of us, feel both odd and familiar. I am a neuroscientist, but first, I am a person living my own human experience. So I found myself thinking how often, in the course of life, these things we call thoughts and emotions appear, unbidden, from some recess of our minds and make themselves known to us, as if "we" are not quite the same as everything going on in our "conscious" and "unconscious" brains. Many of us, at some time or other, may even have had the experience of hearing a distinct voice, a parent or coach, speaking to us. Eleanor's voices seemed more coherent and more separate, but might they not be on a continuum of states of mind that we all have? When should society (namely us) view this form of internal experience as a disease, instead of a rare, but acceptable, part of life?

* * *

Madness, Revolution, and Making Peace

Ron Unger

While some will frame Eleanor's story, told in her awesome TED video, as the triumph of an individual struggling against "mental illness," I believe the story might better be seen as a refutation of the whole "illness of the mind" metaphor, and as an indication of a desperate need for a new paradigm.

When human experiences like hearing voices are framed as "illness," the strategy of attempting to eradicate them naturally follows. When Eleanor was first hospitalized, she was trained in this model, which directly led to what she describes as her engagement in a "psychic civil war," where the voices multiplied and became overwhelmingly nasty. Unfortunately, this is not unusual: research shows that fearing experiences, and attempting to avoid and/or suppressing them, often predicts the escalation of difficulties.
* * * 

Listening to the Soul

Mark Rubinstein
As a novelist and psychiatrist, I listened to Eleanor Longden's lyrical presentation with a mixture of awe, admiration and humility.

She hauntingly described the "toxic, tormenting sense of helplessness" accompanying severe mental disturbance. "My voices were a meaningful response to traumatic life events. Each voice was related to aspects of myself... that I'd never had an opportunity to process or resolve, memories of sexual trauma and abuse, of anger, shame, guilt, low self-worth." I found these statements deeply insightful.

I was particularly impressed when she said the voices "represented the parts of me that had been hurt most profoundly."

* * * 

Eleanor Longden's TEDTalk: "The Voices In My Head"

Lloyd I. Sederer, MD

Damage is not destiny. That is Eleanor Longden's lived experience and the message delivered in her warm, poignant and illuminating TED talk.

She casts a striking figure, statuesque in the beam of the TED lights with her long, golden blond hair and crystal clear blue eyes, telling a story about psychosis -- her own. I watched, mesmerized, and saw both her confidence and her fragility as she revealed how what started as benign voices commenting on her behavior escalated to sinister, accusatory and demoralizing demons. She was told she had schizophrenia, a severe and persistent mental illness. Like many people in a psychotic state she was given medication that -- while generally necessary -- left her feeling more "drugged and discarded" than having assisted her in overcoming a serious illness.

* * *

Mind Wide Open: Listening to Disturbing Voices, Thoughts and Feelings

Dr. Gary Trosclair
"Is that crazy?" my patients sometimes ask me when they've told me something they're feeling or thinking that they're worried about. "No, it's not crazy," I say, "but I get that it can be crazy-making." I understand that while their feelings or thoughts don't necessarily qualify them for a trip to the hospital, they can be very disturbing. But I've also come to learn that while what comes up inside can be distressing, it may well also have meaning. And while the experience that psychologist Eleanor Longden describes in her TEDTalk is far more dramatic than what most of us go through, her talk shows the way to a more informed and fulfilling way of living; we should all listen to our voices.

* * *

Psychiatry and Recovery: Finding Common Ground And Joining Forces

Allen Frances
Eleanor Langdon is an extraordinary woman who has shown remarkable grit and creativity in transforming her disturbing symptoms into useful tools. Hats off to her for finding such a fruitful path to personal recovery and for sharing her techniques and inspiring story so that others may benefit from what she has learned. 

There are many precious lessons we can draw from this tape- never give up hope; never forget the person who is ill by focusing only on the illness; normalize the experience of mental illness rather than stigmatizing it; and use the symptoms as a way of gaining self understanding and self acceptance.
* * *

The Hope Within

Ashley L. Smith
Eleanor Longden's TEDTalk, "The Voices in My Head," provided insight into a world I know all too much about -- living with schizophrenia. Schizophrenia can be characterized by irrational thoughts, bizarre behavior, hallucinations, delusions, and psychosis, or lack of understanding of reality. Hallucinations can come in all five bodily senses -- sight, hearing, feeling, taste, and smell. Despite popular belief, not all people with this type of mental illness experience hallucinations. Sometimes people with different mental illnesses including bipolar disorder, depression, and schizoaffective disorder experience hallucinations too.

Eleanor's experiences seemed to parallel some of my own which helped me identify with her even more than simply sharing diagnoses.
* * *

Why Mental Health Is Losing Its Soul

Jeffrey Rubin, Ph.D.
Many years ago I worked with a man in his early 30s, who was sent to me by a psychiatrist because he suffered from "delusions of persecution." Short and slight, "Roger" believed rays were being beamed into the bus he was on.

Schizophrenics are supposedly people who are crazy and "out of touch with reality."

At the end of our first session, Roger leaned forward and asked if I would treat him using only intensive psychotherapy, without forcing him to take drugs and become a "zombie."

"Let's try it and be honest about how it goes," I said.

* * *

The Real Dangers of Self-Stigmatization

Katy Gray
Being sectioned and locked in a hospital ward wasn't on my bucket list, but it's something that has happened to me twice. The first time, I was 20 and in the middle of my studies at university. I had been hearing a voice for two years, a voice I believed was the devil. He made me do many harmful things to myself, but his latest command was even more extreme. He commanded me to stop eating, and for two weeks, I obeyed him. I was physically and mentally exhausted after this fortnight, but being sectioned still managed to take my breath away.

Around ten minutes after being sectioned, I was told I was being prescribed an antipsychotic.

"Wait, an antipsychotic? Does this mean I'm psychotic?" I thought.

* * *

Realize Your Mind's Intrinsic Power 

Marie Pasinski, M.D.

Holding a human brain for the first time was a powerful moment. Cradling the fragile organ in my hands, I had this overwhelming realization that every thought, every emotion, every experience and every dream this person ever had was coded within. As a neurologist, my awe for this miraculous structure intensifies with every new breakthrough in neuroscience and each personal triumph that I encounter. Eleanor Longden's talk, "The Voices in My Head" is a testament to the intrinsic power of the human brain and its ability to redesign itself. 

Only recently have we begun to understand that thoughts are structurally encoded within the brain. Every time you think a specific thought, certain pathways of neurons fire up. With repetition, these pathways are strengthened.

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