I was reminded recently of this video, recorded in the summer of 2016, when Connecticut mental health advocate Richard Weingarten, interviewed me for his local access television show in Branford, Connecticut. Thank you to Richard for his continuing education and advocacy work in mental health.
I was one of six authors who gave a 10-minute book reading at the ISPS-US Conference in Boston in October. It was videotaped and went up on their website at the end of December. The other authors included Marilyn Charles, PhD, ABPP; Ty Colbert, PhD; Joan Fiset, MA; Narsimha Reddy Pinninti, MD; and Ira Steinman, MD.
I will be doing a book reading and signing on Saturday, September 10, 4-6 pm, at the Silk Road Art Gallery at 83 Audubon Street (across from Neighborhood Music School) in New Haven. I was invited to do this reading by Dan Li, the former manager of the gallery because she felt it important to reach the Yale Chinese community. If you are free and would like to see a beautiful gallery right in the heart of New Haven, socialize, and hear me read, I hope you’ll come. The passages I’ll be reading will be focused more on my heritage and the ways in which the facts of immigration and growing up Chinese in America contributed to the conditions that led me into psychosis. Because the goal is to demonstrate to the Yale and New Haven Chinese communities that seeking treatment for mental distress is not shameful, but can be life saving, and also to urge people when they seek treatment that even while acknowledging that they need help, they should trust themselves and try to find the balance between what busy professionals say is necessary, and what they need to do to be as fully alive, and human, and engaged with their families and loved ones and this world—in other words, as fully themselves—as they can be. Claire
Hearing V0ices, Living Fully: Living with the Voices in my Head. ISBN: 9781785927188. Published by Jessica Kingsley Publishers, http://www.jkp.com, on June 21, 2016.
Remarkable and inspiring. In a clear and resonant narrative voice, Claire Bien tells how she struggled and eventually surmounted auditory hallucinations and severe emotional turmoil while living a full life: maturing in the first generation of a Chinese-American family, marrying, working full-time, and nurturing a son in a supportive family and community. Selby C. Jacobs, MD, MPH, Professor Emeritus of Psychiatry and Public Health, Yale School of Medicine, Department of Psychiatry
If you come to this book with an open mind and a responsive heart, you will be rewarded with a well-told tale of human aspirations, courageous actions, and notable achievements. From the Foreword by Larry Davidson, Ph.D., Professor of Psychiatry, Yale University School of Medicine.
Bien’s memoir witnesses to the resilience of the human spirit and her determination to live a full life, thus illustrating that a person is more than a diagnosis. Therapy, medication, relationships and work are all critical components that enable a person to regain a life despite debilitating symptoms. She is a woman of courage. Nancy Kehoe RSCJ, PhD, Author of Wrestling with Our Inner Angels: Faith, Mental Illness and the Journey to Wholeness
In this candid, informative memoir, Bien, a trained facilitator for the Hearing Voices Network, describes experiencing auditory verbal hallucinations throughout much of her adult life. Having eventually learned to manage this condition, she aims to bring hope to others in the same circumstances. . . . Bien is lucid and calm in looking back at her life and battles, displaying an admirably unflinching self-awareness. . . . and her journey will appeal to others struggling to overcome or better understand the same affliction. (Publisher’s Weekly, June 2016) To read the full review, please visit: http://www.publishersweekly.com/978-1-78592-718-8
This is a revolutionary book, written by Claire Bien, who has experienced and dealt with auditory hallucinations-latterly without medication. Now living with a son and successful career, it tells of her determination not to let the disease beat her. …Some of the book can be graphic, as Claire provides a full picture of the ‘degree of horror’ such a condition can engender; however, she also provides hope of recovery, ‘even the most horrifying and bizarre beliefs are not sign and symptom of an irreparably broken mind.’ (Anne Parfitt-Rogers, New York Journal of Books) To read the full review, please visit: http://www.nyjournalofbooks.com/book-review/hearing-voices-living-fully-lhead
Reader reviews are available on Amazon.com: https://www.amazon.com/Hearing-Voices-Living-Fully-Head/dp/1785927183/ref=tmm_pap_swatch_0?_encoding=UTF8&qid=1471780463&sr=1-1
Foreword by Dr. Larry Davidson
“Beware of strangers bearing gifts.” Claire gives several gifts to the reader of this warm and enlightening memoir, and perhaps it is only those readers who think that they already know what mental illnesses are who should be cautioned. If you come to this book with an open mind and a responsive heart, you will be rewarded with a well-told tale of human aspirations, courageous actions, and notable achievements. You will take delight in our protagonist overcoming the odds of her presumed “illness” and life situation—as so many others with these kinds of struggles do—and may bemoan the fact that mental health services did not help more to bring about her happy ending. If, on the other hand, you believe that you know what mental illnesses are and believe, or expect, psychiatric treatments to be effective in easing the suffering wrought by these conditions, you are likely to be at least bewildered if not also dismayed. Just know that that discomfort is another one of Claire’s gifts.
Claire starting hearing voices when she was 31 years old. She was encouraged by her loved ones to seek psychiatric treatment, was hospitalized twice, and tried a number of different medications at different doses at different times. While she received some short-term relief from the voices and associated delusional beliefs in response to medication, none proved helpful in the long term and, as she writes in the following, “I believe it was my decision, finally, to take responsibility for myself as well as for my young son that changed everything.” How, in these days of “brain diseases” and direct to patient pharmaceutical advertising, are we to understand how Claire “changed everything” through her own resourcefulness, ingenuity, and dogged persistence? How do we understand that the voices she heard could be helpful at times and that they responded to her thoughts, decisions, and moods? How are we to understand that she has recovered?
Claire’s story is certainly not the only one of a person who manifested the frank psychotic symptoms of a mental illness, found a way to manage and live with those symptoms, and eventually recovered her life. We now know that that happens much more often than we used to think, and that, in fact, most people who do not take their own lives experience significant improvements in their mental health over time. In this way, Claire’s story adds to the increasing numbers of such recovery narratives that are appearing as courageous people take the risk of sharing their own experiences with mental illness. Like Claire, they describe the importance of love, faith, and family support, the value of pursuing their own passions and interests, and the crucial roles that hope and their own decisions and sense of agency play in their recoveries.
But Claire’s memoir is different from many recovery narratives in an interesting and challenging way. Since she did not begin to experience psychiatric symptoms until age 31, Claire takes the opportunity to lure us into, to gently immerse us in, the story of a very ‘normal’ person. Her life was in every way unremarkable prior to her first experiences of voice hearing. She was, and remarkably remains, an exceedingly ‘normal’ person throughout the memoir. As a result, it is easy for us to identify with her, to join her story early on in the book and to follow along faithfully as if we were reading a compelling novel. Having established this connection, she then tugs us along with her into her experiences of what psychiatrists would undoubtedly describe as psychosis. But—and this is the important point—it is not described, and then inevitably dismissed, by Claire as psychosis. Rather than distancing herself from what by all accounts were sure to be terrifying and disorienting experiences, she faithfully reports to the reader both these experiences themselves and her best efforts to make sense of these experiences as they were occurring. There is no Monday morning quarterbacking going on in this book, and as a result we get—perhaps for many of us, for the first time—to witness up close and personal what it is like to have to contend with, to have to live one’s daily life in the face of, the anomalous experiences that get labeled and packed neatly away from view as psychiatric symptoms.
There is little that is neat or orderly to Claire’s story. Through her earnest efforts to be transparent, we come face to face with both the kinds of experiences involved in mental illnesses and the kinds of treatments offered for them. When she tells us that she felt “like a piece of heavy rubber with a heart and soul of wood that was going through the motions of being human,” we understand why she stopped taking the prescribed medication. When she tells us that she worked hard, to the point of exhaustion, “not to seem too crazy” to her family, co-workers, and friends, we feel for her and hope she succeeds. And when she tells us that she “wondered whether some of my colleagues were practicing some form of witchcraft or voodoo” or whether she has really sold her soul to the devil, we appreciate that no one has really offered a better explanation yet for what is going on in her life.
Current estimates are that voice hearing may be as common as left-handedness. Few people are prepared for such experiences the first few times they happen to them, however. Claire’s struggle, in that respect, is very common in people who hear voices and whose cultures do not provide constructive or adaptive ways of making sense of such experiences. While many such people end up coming into contact with the mental health system and its labeling of these experiences as symptoms, many also leave the mental health system unhealed and unhelped because they do not find such a one dimensional, simplistic explanation nearly as compelling as the voices themselves. Claire shares with us that largely hidden story of people contending with voices on a day-to-day basis, helps us to appreciate how compelling the voices can be when they are responsive to the person’s thoughts and actions, and does not shy away from telling us, even as the story comes to an end, that she still doesn’t understand what has happened, or continues to happen, to her.
While we may feel discomfited or bewildered by this fresh and honest account of Claire’s experiences and her efforts at making sense of them, our society as a whole, and our mental health system in particular, may benefit tremendously by accepting this gift as an invitation to rethink the nature of mental illness and how we treat it. Everyone who experiences what we currently consider to be a mental illness was ‘normal’ before having those experiences, remains ‘normal’ as they try their best to make sense of and manage such experiences, and emerges as yet still ‘normal’ in the aftermath of such experiences as well. Now that Claire’s memoir has made this abundantly clear, we have to begin to figure out what to do about it.
Larry Davidson, Ph.D.
Professor of Psychology, Yale University School of Medicine
Hearing Voices, Living Fully
When I began writing my memoir in the fall of 2010, I believed, based upon my own experience and observation that some people who have resigned themselves to a lifetime of medication management need not do so. I believed that many who are terrorized by hearing voices might find comfort and perhaps a glimmer of hope in reading my story and discovering how I learned to conquer my demons. I hoped that some, with appropriate support, would learn as I did to find balance between the brain and body’s need for medication to achieve chemical equilibrium and the mind and spirit’s need to be free of deleterious side effects. I hoped others would learn to challenge their voices, their demons, and reclaim a large part of their essential selves. My hope was that the mental health community would also find merit in my story, for it seems to incorporate each of the aspects of the community mental health model: medication management when appropriate and for as long as absolutely necessary; psychotherapy; family, friends, and community; work, faith, trust—in self as well as others, and a will to live as fully as possible within the world that we create for ourselves.
My hopes were realized far beyond my expectations. Soon after I began writing the memoir and speaking about my experiences, several members of the Yale School of Medicine’s Department of Psychiatry took an interest in my story. Two in particular—Dr Selby Jacobs and Michael Rowe PhD—were critical to its development. A third, the late Dr Ralph Hoffman, provided me with readings that informed the development of the final chapter, ‘Understanding the Voices’. Drs Jacobs, Rowe, and Hoffman, along with several other mental health professionals who have read all or parts of my manuscript, encouraged me throughout the process. All believed it important for my story to be told. However, even with the support of distinguished faculty in one of the best medical schools in the world, I wondered whether I was doing the right thing. Because hearing voices is associated with schizophrenia, and schizophrenia is still considered by most to be an intractable, incurable disease of the mind, I worried that speaking too freely about the fact of my virtually full, unmedicated recovery would do harm. I had always known that my story was not unique. But I thought it might be very unusual, and I was afraid that if I spoke too openly about my ability to live a full and productive life even while hearing voices and experiencing other unusual phenomena, I would cause harm to people who really do need ongoing medication management. I was afraid that people who heard my story would point to me and say, “If she can do it, so can I,” and go off their medications with potentially disastrous results.
Another part of my motivation in keeping silence was self-serving. I chose silence because I was afraid that if people knew my diagnosis and knew that I still struggled occasionally, I would be treated as “less than” and that I would suffer as a result. Although my husband and family were completely supportive, and the new friends we made in New Haven were very kind, I chose to act as if I had no psychiatric history and the hospitalizations had never happened. To the outside observer, I was living a reasonably comfortable and well-managed life. I was so terrified of the stigma of mental illness and the potential for mistreatment at the hands of others that I didn’t realize that the stigma I was actively imposing upon myself was also damaging.
I began speaking out in the fall of 2009, when I was sent by my employer to the organizational meetings of NAMI Elm City, the New Haven affiliate of the National Alliance on Mental Illness. At those meetings I met many amazing people who were openly sharing their stories. People in recovery and family members alike spoke bravely of their feelings of anger, fear, confusion, doubt—and loss. Hearing their stories gave me the courage to begin telling my own.
Those who heard my story were initially surprised. Then they thanked me. Because I am high-functioning and had a modest professional career, seeing and hearing me gave them hope. It was then that I truly broke the silence. I decided to stop “passing” and resolved to speak more freely. Still I worried about being irresponsible.
In 2013, I learned about the Hearing Voices movement, and in 2014, the Connecticut Department of Mental Health and Addiction Services brought the Hearing Voices Network (HVN) to Connecticut. Through the HVN I have learned that I am not unusual and that there are literally millions of people throughout the world who have had similar experiences and with whom my story will resonate. I also learned that many of the techniques I used to regain control over my mind and my life—argument, negotiation, acceptance when appropriate, and an unwavering determination to live as fully as I could in the real world—are tried and true methods of the Hearing Voices movement. This knowledge has set me free.
As a result of the HVN, I wish to do more than simply tell my story. My wish now is to help normalize the voice-hearing experience and to be an advocate for reform, adding my story and voice to those who are calling for a change in the medical–psychiatric profession’s approach to the diagnosis and treatment of people with mental illness. I hope that people with psychiatric diagnoses who do not necessarily hear voices, but who struggle to live in a society that is neither friendly toward nor accepting of difference, will also find meaning—and hope—within this narrative.
Trying to remember fully and accurately what happened and to reconstruct the facts and feelings I had decades ago has been a remarkable journey. I have tried to write only about what I truly remember and to be as accurate as memory will allow. I have also had the assistance of family members—my sisters Elaine and Daphne, who helped me reconstruct some childhood and family memories, and my ex-husband Bill, who has written extensive, thoughtful commentaries to the illness narrative that appear throughout the memoir. The illness narrative has also been aided by my journaling: a few entries made during my first hospitalization in 1983 and a more substantial manuscript composed in 1993, after my second break. I also kept journals throughout my twenties, so I know who I was and how deeply unhappy I was.
At times in my narrative I have provided a great deal of detail that was embarrassing even as I wrote it. But I persisted, not out of latent exhibitionism but because I wanted people to know the degree of horror I faced. I wanted those who might be facing similar manifestations to know how bad my demons were, and to take heart in knowing that they can be tamed. I also wanted family members and professionals to understand that for many people, even the most horrifying and bizarre beliefs are not sign and symptom of an irreparably broken mind. Especially during my second psychotic break in 1989–90 I suffered a great deal, and yet not that long afterward I was able to regain a large measure of control over my thoughts.
I do still live with intrusive thoughts and occasional voices that seem not my own. For the most part the intruders are supportive, and I delight in their presence. Occasionally they are difficult, especially when I am under stress and being hard on myself, and I take active measures to question their observations and ask that they speak the truth. When I stand up to them, the difficult voices generally go away. While I do welcome the friendly and helpful voices, I try not to cultivate them too much, preferring to live as much as possible in the physical and material world populated with family, friends, and community.
About the book
I began hearing voices when I was thirty-one years old, after over a decade of struggling with depression and soon after the suicide of my first cousin. The early voices were infrequent, merely curious, and largely benign. But as I began paying more attention after my husband and I moved to Connecticut, they grew more frequent, and darker. By Halloween day I had become so paranoid that I smashed every light bulb in my living room searching for hidden cameras.
Encouraged by family to seek help, I committed myself to a psychiatric hospital, where my paranoia escalated. I signed out against medical advice, but my terror mounted and I admitted myself to a second hospital, where I allowed the doctors to treat me. I was diagnosed with schizophreniform disorder and placed on Haldol, which stopped the voices. But the side effects were crippling. I wrote of that time, “On Haldol I could find no joy in anything. . . . I felt like a piece of heavy rubber with a heart and soul of wood that was going through the motions of being human.”
Over time, under my psychiatrist’s supervision, I tapered the medication and eventually weaned myself from it. I was doing so well that in 1986 my husband and I decided to start a family. But in 1989, when our only son was not quite three, I again spiraled into psychosis and very nearly committed suicide. My responsibility for and to my son kept me from following through.
Hearing Voices, Living Well chronicles my journey through depression, psychosis, and an unmedicated recovery. Throughout this period, thanks to a habit of self-guided and professional therapy, I learned to challenge my demons and negotiate the conditions that ultimately allowed me to regain control over my mind and life, even while continuing to hear intermittent voices. I attribute my success to my dual desires to be fully myself and to live as fully in the world as possible. The communities I have built around myself—family, friends, work, and faith—have allowed me to stay the course.
I will donate a minimum of twenty percent of my royalties to promote the development of more social, psychological, and integrative approaches to the treatment of psychosis.
For more information about Jessica Kingsley Publishers, please visit their website, http://www.jkp.com