Personal Accounts: From the Depths of Despair to a Mission of Advocacy

I sensed that I was flat on my back in a moving vehicle, but not much more. My sleeve was being rolled up, and I felt a familiar pumping-up pressure on my upper arm. Someone was checking my vital signs. From the cold of the vehicle I could hear doors open and felt a warm blast of air as I was moved down a long corridor. Looking up through glazed eyes, I could see green tiled walls and bright fluorescent lights above me. "One, two, three, lift." I was now on a softer bed, drifting in and out of awareness. "You have to drink this," someone was saying while holding a tall Styrofoam container, filled with a tasteless ink-black liquid, to my lips. I later learned that the charcoal drink was given to absorb the toxins that were in me, following my having taken a handful of pills. I am six foot six; I have very big hands.

The year was 1996, and I had survived my third suicide attempt. I was now on the psych unit of New York Hospital, Westchester. I had just returned from waiting on line with the other patients during "morning meds." My doctor entered my room to give me some sobering news, on a subject that I knew all too well: "You have a form of serious clinical depression that has not responded to medications over the past several years. If this continues much longer you are headed for a state hospital."

The notion of ending up in a state hospital had me in sheer terror—but then my ten-year illness had destroyed everything I had once taken for granted in my life anyway. I was running out of time and knew my inpatient insurance would be through after this latest hospitalization. I was homeless, destitute, still hopelessly depressed, with no where else to go. "We'd like you to consider ECT [electroconvulsive therapy]," my doctor added; "it's the only thing that hasn't been tried."

"What are we waiting for?" I pleaded, "Let's do it already!" I knew very well what ECT was. I had nothing to lose.

Looking back on the ten years of my illness, I kept wondering how this could have happened to me. I was the youngest of five children from a good family who grew up in an affluent New York City suburb. I had always been a happy, energetic, and caring young man who chose to help others at an early age. I earned my bachelor's degree in psychology at the University of Arizona. I returned to New York and worked with inpatients who were suffering from severe mental illness at the very same New York Hospital in Westchester. Determined to find a career helping others, I completed my graduate studies at New York University, started a family, and pursued a career in the field of philanthropy, raising funds for human services causes.

Sadly, during my early 30s, my mom lost a courageous three-year battle with cancer, and my own personal life had been severely disrupted by a failed marriage and the separation from my then five-year-old son. Shortly thereafter, I began to experience symptoms of severe anxiety and panic. I had never in my life felt such feelings. The year was 1986. I was given a prescription for 100 Valium (diazepam) by a psychiatrist who had never seen me before I telephoned to request an urgent appointment.

Because I had spent years learning about mental health in college and graduate school, the fact that this was happening to me was quite frightening and bewildering. I was completely at a loss as to what to do about it. The Valium did nothing for my symptoms, and as the weeks passed I had feelings of such hopelessness and depression that I thought I didn't deserve to live. I took an overdose of Valium and was brought to Saint Francis Hospital in Poughkeepsie, where I was living at the time. I was given a diagnosis of severe reactive depression, which is not uncommon following the death of a parent or a divorce and the disruptive effects of these events on one's emotional state. I stayed in the hospital for a few days and was sent home with some new medications.

Because I had a career to be concerned about, I proceeded with the conviction that this was simply a passing blip on the time line of my life that would be over in short order. I was not about to let this get to me and could not imagine that it might be an early warning of an imminent and severe mental illness.

The "blip" lasted for ten years. Despite my efforts to put on a brave face during my depression, the attitudes and comments of people around me were just as difficult to contend with: "Snap out of it" and "You're just being lazy" seemed like unbelievably cruel and unhelpful things to be saying to me at this point. "Do you think I really want to feel like this?" I was embarrassed and ashamed of my condition, which was an additional tragedy to endure on top of my illness. The word "stigma" became a new part of my vernacular, and I received a full dose of it from friends, family, and employers alike.

It was now the late 1980s, yet I had no clue about caring for a mental illness, let alone my own, and nobody seemed to have a handbook to give me containing the proper direction to take. With an uninformed regard for staying on the myriad of medications that were being thrown at me every six months and a quickly acquired dislike for their side effects, I continued on a downward spiral. I was watching as my life was being destroyed before my eyes. I began to enter treatment programs with only short periods of wellness and longer and more pronounced periods of devastating depression.

When I had helped care for psychiatric patients as a young graduate student at the New York Hospital, Westchester—the place of my final hospitalization, described at the start of this account—one of my duties was to escort patients to the ECT laboratory and monitor their vital signs during the procedure. Now it was 1996, and I was on the very same table as a patient. How unbelievable; how ironic. Thankfully, in my case, the full course of ECT, over a period of three to four weeks, was to be the treatment that would break the chains of my depression and bring me back to life.

Some months later, with the shadow of my depression lifting, I tried to make sense of my ten-year battle in terms of what mistakes I (and others) had made. I became angry that my life had been put in such danger, in good part because of two factors: my own lack of mental health education and, more disturbingly, the fact that treatment teams caring for me never promoted the other valuable resources within the mental health community around me.

I was never told that there was a resource-rich Mental Health Association (MHA) in the community, or that there was a group called the National Alliance for the Mentally Ill (NAMI) for family members. I had no idea that there were other places to aid in recovery, known as drop-in centers and clubhouses. I would have welcomed such direction.

I still wonder whether my treatment teams were just never trained to be advocates. Or, alternatively, maybe I was too valuable a commodity to them. Were they afraid they would lose me to another provider of services? I hate to think that that might have been the reason.

I realized that there was a critical omission in the recovery model of our mental health system. There was a complete lack of readily available and up-to-date information on the nature of mental illnesses, treatment options, coping strategies, community resources, and support systems that should be regularly sent directly to those who need it most. Sadly, outside of the few hours a day that patients are involved in treatment, nobody had found a way to reach them where they live. It is sad to think that patients are going home to a lonely apartment where they are isolated and highly vulnerable, as I had been. In addition, most families are at a loss as to what to do and where to go for help for their loved ones.

I knew this was wrong and set out to change the way people learn about mental illness and our mental health community. I imagined that this lack of mental health education probably existed in communities near and far, and that the community would welcome a solution. I was right.

I became committed to helping the mental health community fill this void and created a quarterly resource-rich newspaper called Mental Health News. Since the fall of 1999, Mental Health News has grown to be an award-winning publication. This winter we premiered a new bilingual (Spanish) version called Salud Mental to reach out to and provide vital mental health education to the rapidly growing Latino community. Both publications are read by consumers, families, clinicians, providers, and legislative decision makers alike. We have a combined readership of more than 70,000. The articles are written by some of our best minds and treatment professionals. If it sounds like I am proud of Mental Health News and Salud Mental, I am.

Working with little funding, we manage to ship thousands of copies of both quarterly newspapers to clinics, hospitals, and mental health agencies throughout the metropolitan New York region. Mental Health News has become a nonprofit organization and has started to receive funding. We continue to build resources to expand our reach nationwide.

Our mission is to break down the many barriers to treatment, to end stigma, to advocate for parity in insurance coverage, and to increase funding for research and community treatment. We must continually fight for more positive legislation related to the mentally ill. The task is large but not insurmountable.

And me? I guess you could say I have gone from the depths of despair to a mission of advocacy. Incredibly, my life is fuller now than it ever was before my illness began. My greatest pride comes from knowing that we are providing a means to help people find their way through the difficult maze of mental illness, and we are succeeding in our mission to give our mental health community the recognition it deserves. We must do more to help people find the treatment and support they need to get well, stay well, and get their lives back.

Please visit our Web site at www.mhnews.org to learn about our organization, to read many of our back issues, and to get involved in our vital mission. Every community needs to have an assertive mental health education program, and Mental Health News can help to fill that need.

Mr. Minot is founder and president of Mental Health News Education, Inc., publisher of Mental Health News and Salud Mental, 65 Waller Avenue, White Plains, New York 10605 (e-mail, [email protected]). Jeffrey L. Geller, M.D., M.P.H., is editor of this column.