Much of the following narrative was drawn from my memoir, Hearing Voices, Living Fully: Living with the Voices in My Head, (c) 2016 Jessica Kingsley Publishers, www.jkp.com. Reprinted with permission. This article may not be reproduced for any other use without permission.
In the beginning the symptoms of my illness were quite simple: I heard voices. Sometimes the voices were those of people I knew and loved, and sometimes they were strangers’ voices. Usually the voices were friendly and helpful, and sometimes inexplicably knowing. Occasionally they were curious. “What is she doing now?” they might ask. Although I do not recall hearing voices as a child, I was familiar with the friendly ones. The one I loved best is akin to instinct, to the quiet little voice that sometimes tells me what my heart already knows. During the spring and early summer of 1983, when I was 31, the voices began manifesting themselves in a more intrusive, auditory, seemingly external manner. But because I usually heard them only when other people were around, I did not know they were within me. And because most of the time they simply made observations about the real, and relatively ordinary things happening in my world, I did not mistrust them. But then they started getting things wrong. When they turned cruel and malicious, I got scared.
So begins my memoir, Hearing Voices, Living Fully: Living with the Voices in My Head, which chronicles my journey through depression, psychosis, and an unmedicated recovery, and describes how I learned to challenge my demons and negotiate the conditions that allowed me to regain control over my mind and my life.
When I began writing in 2010, my goal was simply to offer a measure of hope to those who have, during periods of great stress, begun hearing voices. Although I thought my story was very unusual, I thought it possible that many who have manifested the symptoms associated with schizophrenia could achieve a greater degree of recovery than is currently the norm. I also thought that a smaller group might, like me, achieve a virtually full unmedicated recovery. In 2014, when I became involved with the Hearing Voices Network, I learned that my experience is not uncommon and that there are literally millions of people in the world who are living full lives, even while hearing voices. Having thus evolved, my goal now is to help normalize the voice-hearing experience and to be an advocate for reform, adding my story and voice to those that are calling for a change in the medical-psychiatric profession’s approach to diagnosis and treatment of people with mental illness, especially those who hear voices.
Throughout the writing process I had extraordinary support from several faculty in the Department of Psychiatry at the Yale School of Medicine. The published memoir has been gratifyingly well received. In her New York Journal of Books review, medical/science writer Anne Parfitt-Rogers pronounced my memoir “revolutionary.” The Publisher’s Weekly reviewer observed that I display an “admirably unflinching self-awareness” and that my “journey will appeal to others struggling to overcome or better understand the same affliction.”
Since I’m better at telling and writing my story than I am at marketing it, I struggled with precisely how to address this piece. I finally decided to follow the advice of my writing instructors: “show, don’t tell.” Therefore most of what follows is excerpted from the memoir.
Continuing with the Prologue. . . .
The voices got worse in August, after my husband and I moved from Princeton, New Jersey, to New Haven, Connecticut. One October afternoon I was sitting in the sunny alcove of our Orange Street apartment trying to write. It was a warm day, so the windows were open and I could hear all the noises of the street. I enjoyed them—they made me feel a part of New Haven, a little less alone. Around three p.m. I heard the laughing voices of children in the neighborhood. My husband, Bill, and I had been talking about starting a family, so I stopped my work, listened, and fantasized about our future. As soon as the distant, unknown children became aware of me, they turned malevolent, accusing me of being an alcoholic, a madwoman.
“She sits inside and stares at the wall all day,” one child screamed. “She’s craaazy.”
The boy sounded a little older than the others, though his voice hadn’t yet changed. His slightly nasal voice, and the way he seemed to savor the word “crazy” made me cringe. I looked quickly out the window but saw no one. Though the boy was too far away for me to see, his words flew loud and clear through my open window; the entire neighborhood had heard him.
So unfair, I thought, for I was hard at work on an article about North Haven artist Nancy Sonnenfeld for the New Haven Advocate. I was staring at the wall, but I was staring because I was projecting slides of Mrs Sonnenfeld’s portraits of irises onto the wall and recording my intellectual and emotional response to those pale, ghostlike, and disturbingly beautiful images. Delight in the neighborhood vanished. Scared and unhappy, I shut the window, turned on the fan, and went back to my writing. . . .
From Chapter 26: Understanding the Voices
Until the middle of 1983, I had always been able to distinguish between my inner voice and the voices of the physical world. A lot of times my inner voice gave me really good advice. Growing up I observed that if I followed my instinct, I almost never went wrong. But if I overthought things, allowing my decisions to be swayed by ambition, curiosity, or desire, without the necessary preparation or support, I was often disappointed. But intellectually, emotionally, and in every other way, I knew precisely what had happened, and why. Even in my late teens and twenties, when I was deeply unhappy and at times desperately lonely, I knew that outcomes were based upon my own actions and decisions, along with substantial preparation. There was nothing mysterious about the thoughts that entered my mind.
But something happened in 1983 that opened the door to a world of malice and cruelty I had never known. Bill and the doctors at Pineywoods and at Yale thought that door was opened by the guilt I felt over the role I had played in bringing my cousin Jean to the United States, which precipitated her subsequent suicide. They thought the rage I felt over my personal and professional failures was less important. But I wonder if the shame and self-doubt that had arisen as a result of my feelings and actions were truly the only factors. How much did my carefully calculated plan to end my own life, family and friends notwithstanding and the rest of the world be damned, enter into the equation? When Jean committed suicide in December 1982, I had promised myself I would never commit such an act of violence against those who love me. And yet, just four months later, I would have thrown myself in front of a train had Bill not stopped me.
I began hearing voices shortly thereafter. . . .
Thanks to the Hearing Voices movement there is increasing understanding and acceptance that often the sources of voices are real people in the voice hearer’s life, and that exploring the voices’ origins, and if possible establishing a relationship with them, can be helpful either in driving them off or in achieving a relatively peaceful coexistence. I believe I understand the origins of the hateful voices of 1983. They were some combination of my own cruel and self-hating voice, born of the guilt I felt over Jean’s suicide, and the voices of my maliciously gossipy colleagues. . . .
I think I have been able to force the cruel voices to go away because I have never felt for long that I was truly subordinate to them. I believe this is driven in large part by upbringing and family. I think Father’s example of being fair-minded, rational, and as reasonable as humanly possible served me well. I sincerely believe that my upbringing—being taught to behave well, to respect family, to forgive as much as possible, and to use justice and reason in making decisions, provided the foundation that allowed me to pull myself out of psychosis.
I think it is also attributable to the fact that I was an adult when they first manifested themselves: I was years beyond the turmoil, doubt, and search for self that is at the core of adolescent angst. Also, by the time the truly demonic manifestations presented themselves in 1989, I was a mother. Because I had responsibilities, I couldn’t be as shy and passive as I’d always been. And most of the time I was a good mother! About a year after my son was born I remarked about my newfound confidence to a friend who observed, “Of course, now you’re an authority figure!” So when the voices came back and the shadows sprang up, I couldn’t allow them to win. How could I allow myself to be dominated by something unwanted that I believed to be mostly in my mind?
. . . I believe my relatively solid sense of self, past and present, stems from the fact that I was never abused as a child, either physically or emotionally. I grew up in a family where there was a foundation of love and basic respect, and a true desire, imperfectly realized, for understanding. And I was never forced to be anything other than who I am. While my parents would periodically express disappointment that I did not match Elaine and Daphne’s level of accomplishment, they did not push me too hard. I was encouraged to achieve to my potential but was not punished if I did not. Perhaps my years of being an enfant terrible taught them that I would not be forced to do anything until I was good and ready. At the same time, they realized that, in the end, I would do pretty much what was expected. For me, the greatest punishment was always their mildly spoken but acutely felt sense of disappointment. So they set a standard, provided an example, and left me to my own devices. . . .
I think early intervention—or perhaps more accurately a fondness for psychotherapy—was critical to my recovery. I had spent years in therapy, starting at age 20, and was hospitalized at 31, within six months of the onset of voices. My parents were horrified when I first ventured into the world of psychotherapy, and my father likened psychiatrists to witch doctors. But I had already graduated from college and was living independently in Boston, so they had no control over my actions. When I gave up on becoming a lawyer and earned a master’s degree in counseling psychology, I learned more about mental illness in its various forms and guises. So fairly early on, and especially after my family and all the professionals expressed concern about my behavior and thoughts, I accepted that I needed help.
Having accepted the fact of my illness, I was also willing, within limits, to follow the professionals’ recommendations. But there were limits. While I was grateful that medication stilled the voices, I could not accept the accompanying lethargy and sense of hopelessness, and the knowledge that neurological damage would almost inevitably come from long-term use. So I struggled to find balance: taking medication as absolutely needed and working to find another way to regain control over my mind. I will say it again: I believe it was early treatment and a habit of professionally and self-guided psychotherapy that has allowed me to achieve this degree of medication-free recovery. . . .
This is drawn from the final pages of the memoir:
When I was 26, I thought that my rational mind would triumph over all. . . . Five and eleven years later, I learned I had been mistaken. My rationality was not powerful enough to withstand the onslaught of cruel voices and bizarre physical manifestations, at least not at first.
As I grew more familiar with the cruel voices and demons and began challenging the content of their communications, they backed away. Soon they began flattering me in order to win back my attention and their ability to control my thoughts. But by then I had realized that the cruel voices are neither particularly creative, nor as smart as I am. I must add that I don’t feel that way about the guardian angels, who sometimes tell me things of which my conscious mind is unaware. I continue to vacillate between wishing to believe in the metaphysical (more interesting, makes me feel special) and being inordinately grateful that I possess sufficient independence and intelligence to hold mostly to what I know to be real.
As I have grown older and more experienced, more understanding of myself and the ways of the world, I have learned to distinguish between that which is real and that which is illusion; between that which is driven by fact and that which is driven by desire. I have also learned that while it is important to desire—to dream—it is also important to know how far the self can and should go in pursuit of those desires and the fulfillment of those dreams.
I find it significant that when I established how angry I was, the cruel voices stopped tormenting me. I was lucky. I grew up in a largely loving home, free of abuse. It was love and duty to my parents and family that held me to this world in my early twenties when I was unutterably depressed. I could not dishonor the family by committing suicide. It was love for and responsibility to my son that held me to the world in 1990, when I could see no possibility of escape from the torment of the voices. . . . And it is the requirement of living as fully as I can—for my own sake as well as for the sake of all who love me—that has held me, alluring though subsequent fantasies have sometimes been, to the real, to the rational, to the world. Love is essential.
Not everyone is so lucky. I have observed that sometimes people retreat into madness because they have been horribly abused or because they have lost some essential part of themselves. Sometimes it is money that has defined them, or status, or the belief that they are (or must be) the best in all they do. Sometimes people go mad because the self they know themselves to be is at war with the self they think they must be in order to make their way in the world. And yet some of these people have proved to be astonishingly resilient. I have, by virtue of my job, NAMI, and the Hearing Voices Network, had the privilege of talking with a number of people who, in spite of having grown up with terrible privation or endured mind-numbing, soul-destroying abuse, and who have been deeply psychotic or drug addicted, have been able to reclaim their lives and their minds. . . .
If people who live with mental illness are to use their reason to draw them back to the world, then we must give them a reason to wish to be in it. . . .
I hope that the increased political will to support mental health treatment within the United States will result in more access to psychotherapy and nonmedical interventions. I hope there will be a concerted effort to build communities that provide a safe haven, especially for people still in the depths of mental illness and in the early stages of recovery. A community in which we are known, accepted, trust, and are trusted, and in which we feel safe, nurtured, and understood, is a community in which we can live and grow. May we work together to build that community for ourselves, and for the world.