Hearing Voices, Living Full
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 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.