by Bill Lichtenstein

I am a documentary producer, a journalist who has made a living out of helping people tell their stories. I did it for more than 20 years before I got sick.

I worked as an investigative reporter, including seven years at ABC News where I produced segments for 20/20, Nightline, and World News Tonight. I did stories about organized crime connections to the Reagan administration, abused children in state juvenile institutions and exploding automobile gas tanks. Then, in 1986, my own world exploded.

The symptoms of my manic depression were classic: overwhelming energy, extreme euphoria, racing thoughts, irritability, months of depression. I searched through many doctors and a hospitalization for someone who could explain what was happening to me. For years, no one could.

Finally a psychiatrist at McClean Hospital in Boston made the proper diagnosis, put me on medication, and gave me back my life. To understand that what was happening to me was a result of an illness an illness that was readily treatable offered great comfort. But I had so many questions that remained unanswered.

What had caused it? Did it result from something I did, some aspect of my lifestyle or upbringing? Would medication change me deprive me of the spark and creativity that were a part of me and critical to my work as a journalist? Was my experience with the illness unusual? Could I stop 'taking the medicine, and control the illness with sheer willpower? What about close friends and co workers who did not understand manic depression and had distanced themselves from me? How could I communicate to others what this extraordinary roller coaster ride had been like? Would they ever understand what I had gone through?

I was one of 1.5 million Americans with manic depression, but I felt all alone.

Having lived with the symptoms of manic depression for so long, I'd come to believe that they were part of me...

It's the problem virtually everyone with mental illness faces. It's not that people around me didn't care. They just didn't understand why I had changed so dramatically, becoming unpredictable, confused and sometimes difficult. Before they would be able to reach out to me with empathy, support and compassion, they needed to understand what I had gone through.

For me, that meant learning to tell my story, and I did that by helping others to tell theirs. Over the past five years, my company, Lichtenstein Creative Media, Inc., has produced a series of one hour radio documentaries called "Voices of an Illness," featuring firstperson accounts of people describing what it's like to live with and recover from manic depression, depression and schizophrenia.

Following my diagnosis, I started my search for answers where most people would begin at, the bookstore. I looked for anything that might provide insight into living with and recovering from the illness. There was nothing. (At the time Patty Duke's inspiring book "A Brilliant Madness: Living with Manic Depressive Illness" which details her struggle with the mood disorder had not yet been written, nor had Kathy Cronkite's remarkable "On the Edge of Darkness.") Furthermore, film and radio documentaries about mental illness focused primarily on people in the throes of the disorders, with dramatic and often frightening pictures of symptoms but little sense of what the people felt inside. Those in the midst of a mental illness are in no condition to describe their experience in a thoughtful, compelling or insightful manner, nor offer hope for recovery.

In the absence of any book or documentary that could help me, I decided to create my own, and developed "Manic Depression: Voices of an illness," narrated by Patty Duke, the 1992 radio documentary which was to become the first in the Voices of an Illness series.

The initial $400 in seed money for the program came in the summer of 1990 from members of the Manic Depressive and Depressive Support Group of New York, in $10 and $20 contributions. With the help of Bob Boorstin, who had also recovered from manic depression (and has since gone on to work in the White House) I wrote and circulated a one page funding proposal to potential underwriters national mental health groups, foundations, concerned individuals and pharmaceutical companies. The support came quickly. Within two months, I had raised most of the money for the two year research and production of the program.

I found people around the country who had recovered from manic depression professional people, including a Fortune 500 executive, a therapist, a registered nurse, a financial advisor and a salesman. They described in detail every aspect of the illness's effect on their lives from its onset through their recovery. I also was extremely fortunate to gain assistance from top mental health clinicians, researchers and advocates, including Dr. Frederick K. Goodwin, Dr. Robert Post, Dr. William Potter and Dr. Elliot Gershon, all of the National Institute of Mental Health; Dr. Kay Jamison of Johns Hopkins University School of Medicine and Laurie Flynn of the National Alliance for the Mentally Ill. They were generous with their time, answered questions ranging from the simplistic to the philosophical and helped provide a broader context about the medical and social aspects of the illness. On a personal level, it was like having the world's largest support group.

Having lived with the symptoms of manic depression for so long, I'd come to believe that they were part of me: that the short attention span was a character flaw, that irritability was a function of personality, and that the overwhelming energy level was "just the way I was." It was hard for me to understand and accept that many of the effects of manic depression were, in fact, symptoms. The people with manic depression and the doctors validated my experiences with the illness. When computer programmer Joe Valencik talked about hypomania, he could have been talking about me:

"Normal people have this thing called adrenaline that comes on and off and it's a switch. So when they come into a situation like I am in now, with this interview, it comes up and they get this buzz. And they feel it, and they're pumped up, and that's the normal, healthy way. And then it goes away, you know, when they leave. But for people that have the illness and are in that hypomanic stage that doesn't go away, it's just there. It's there when you go to sleep and you're trying to close your eyes and sleep, but your thoughts are still going. You can't even sleep."

Producing the show, I first learned of the relationship between manic depression and creativity from Dr. Kay Jamison's work. It was inspiring to know that far from being doomed by the illness, it actually has positive aspects. In a 1990 speech, she talked about the symptoms:

"It's kind of like who wouldn't want this disease? Right? I mean, you are talking about decreased need for sleep, more energy than usual, inflated self esteem, increased productivity, This Is my favorite one here sharpened and unusually creative thinking. This is listed as a symptom of psychopathology. Uninhibited people seeking hypersexuality. It's hard to come out against any o f these things, 1 mean. And the question is, you know, who wouldn't want it? How can you bottle it? How can you sell it?"

Would medication change me deprive me of the spark and creativity that were a part of me and critical to my work as a journalist? Was my experience with the illness unusual? Could I stop taking the medicine, and control the illness with sheer willpower? What about close friends and co workers who did not understand manic depression and had distanced themselves from me? How could I communicate to others what this extraordinary roller coaster ride had been like?

Although my own personal experiences with the social stigma attached to the illness were not as severe or dramatic as those of school teacher Mike Mayfield, his experiences with his girlfriend's family touched a nerve:

"You know, I came to the window and the first to arrive at our townhouse was Mary's mother. Moments later, Mary's father arrived. Two minutes later, Mary was out the door, engaged in a big argument with both her mother and her father. And 1 looked out, you know, to the neighborhood and people were coming to the doors. The voices had grown so loud that I could hear, Berserker! Berserker! You know, You're living with a madman, Mary! What are you doing? You know, 'He's unsafe. It's unsafe for your children, unsafe for you.' You know, Leave him!"

Producing the show was tremendously empowering and validating. I began to feel I was not alone, either in what I had gone through while I was ill or in my personal struggles with the social stigma of the illness.

The response to the show was overwhelming. Tens of thousands of listeners called seeking help and support from the national mental health groups whose phone numbers we provided at the end of the show. National Public Radio audience services reported an "unprecedented listener response." One woman called a radio station to say she was in her car on her way to take her own life, heard the show, and decided to seek help instead.
We also received a call from an underwriter who suggested a second show, on schizophrenia. The timing was right. A new generation of medications was allowing hundreds of thousands of people previously untreatable to return to their daily lives.

In 1994, "Schizophrenia: Voices of an Illness," narrated by Jason Robards, detailed the often incomprehensible symptoms and social stigma associated with the thought disorder. For people with schizophrenia and their families, the program let them know they were not alone with the mysterious and often terrifying symptoms of the illness. Laura Young, who today is an art therapist, described the onset of her schizophrenia, which as often happens, came on suddenly:

"I was walking across the campus at Yale in spring of my freshman year, and I was looking up at the sky, and suddenly it cracked like a mirror into thousands of pieces. I don't know why I didn't realize that that was an incredibly strong signal that something was wrong with my head and that 1 needed help."

The show tried to demystify one of the most frightening aspects of the illness hearing voices. Murray Frances described her symptoms in extraordinary detail:

"I heard a woman's voice and I no longer remember exactly what she said, but it was something like: 'I want you to know that you have been chosen. You are select, you are special. We're going to take care o f you. We're going to give you great powers. We are a group of very important Lords, and we are going to make you a special person. You're not like any mortal on this earth. You're going to save the earth, in fact.' And... there it is! Which sounds nuts, and was! I didn't tell anyone any of this. Nobody knew, my parents certainly didn't know. And I remember that feeling of being absolutely apart and different, and not like this family I'd grown up in, that now had suddenly become strangers."

For Murray Frances and thousands like her, new medications meant the difference. Today, she has graduated from medical school and is a psychiatrist working with people with schizophrenia.

The power of the show, in large part, was due to the fact that these people had never before told their stories. No one had ever asked them to describe what the illness felt like even though some of them were ill and in treatment for decades. In fact, one leading doctor who treated a woman for seven years said he was totally unaware of his patient's extraordinary experiences. For her, it was a relief to finally talk about what she'd gone through. For the listening audience, it provided a window on this most misunderstood thought disorder.

The third show in the Voices of an Illness series is on depression. It will be narrated by Rod Steiger, and will air in the fall of 1995 on NPR stations across the country. "Depression: Voice of an Illness" will focus on the mood disorder which affects one out of six Americans, and twice as many women as men.

Although the onset and symptoms of the illness are not as dramatic as those of schizophrenia and manic depression, the sheer numbers of people suffering from the wide variety of clinical depressions make it a program that can touch a far greater audience.
The show will highlight that clinical depression is a diagnosable biochemical illness which is different than sadness or the blues and that it is readily treatable. Eighty five percent of people with clinical depression can recover. The program will also feature new clinically tested medications and talk therapies shown effective in treating depression. By doing so, the documentary will hopefully help lift the national shroud of shame surrounding

Following my diagnosis, l started my search for answers where most people would begin at the bookstore. I looked for anything that might provide insight into living with and recovering from the illness. There was nothing. (At the time Patty Duke's inspiring book "A Brilliant Madness: Living with Manic Depressive Illness" which details her struggle with the mood disorder had not yet been written, nor had Kathy Cronkite's remarkable "On the Edge of Darkness:')

the illness, and encourage those affected to seek treatment. Again, people who have recovered from the illness form the basis for the show.

If these programs have proven anything, it is the extraordinary power of a simple story. Thus far, the series has won 15 major broadcast and mental health awards. I was pleased when Time Magazine called the schizophrenia program " a remarkable documentary," in an article which ran under the headline "The Souls that Drugs Saved' opposite a story exposing Dr. Peter Breggin's attack on medication therapy.

In May, the schizophrenia show received the 1994 George Foster Peabody Award for Excellence in Broadcasting, television and radio's highest honor. But most important is the fact that the programs have provided a life line: tens of thousands of listeners have responded with calls for help that were answered by the National Alliance for the Mentally Ill, the National Mental Health Association, the National Depressive and Manic Depressive Association, the National Alliance for Research on Schizophrenia and Depression, the National Foundation for Depressive illness and their more than 2,000 local affiliates across the country.

The general public more often than not sees mental illness in the form of those who are ill on the streets or in the media. Those who have recovered and are in the best position to speak out usually don't, fearing the stigma attached to these illnesses. But, once others can understand, they are in a better position to offer assistance, support, empathy and compassion.

As Mike Wallace said in Kathy Cronkite's book, On the Edge of Darkness:

"People who don't know [what depression is], who say it's selfindulgence, sound callous, but it's not callousness born of indifference; I think it's callousness born of ignorance. That kind of ignorance we've got to get rid of, and little by little 1 suppose, we will. You say to them, It's a pity you don't know. I'm sure that if you knew, I'm sure that if you knew, not only wouldn't you say that, you'd try to help in one way or another."

For myself and those who participate in the documentaries, it is empowering to speak out about mental illness. It helps provide validation, hope and the means to recover. Not to speak out is to live a lie, in the closet. By speaking out about your own experiences, it
empowers all of us, and helps break down stigma. It is the most powerful action any of us can take. Add your voice and tell your story.

(This article was first published in 1995, in The Journal of California NAMI)

BILL LICHTENSTEIN is a media professional who lives and works in New York.