My battle for recovery from schizophrenia

By Marge Wakefield, NSSC Member

I first knew that something was off with me when I was seven. My grandparents took me to a Fourth of July picnic. The whole town had turned out and kids were playing everywhere. But I didn’t feel like playing, running around, laughing, or setting off fireworks. I just wanted to be left alone. It felt like there was something very dark inside me and I called it “the shadow.”

The shadow followed me through grade school and high school. When I was in the tenth grade, I heard about The Interlochen Arts Academy, a school for kids who excelled in music performance and other arts. I knew I had to go. Secretly, I made an audition tape and mailed it in. Several weeks later, I got a letter saying that I would have a $3000 scholarship–a lot of money back then. Interlochen exceeded all of my expectations. I won the piano concerto competition during my first year there, receiving a standing ovation. It was the highpoint of my music career.

After graduating from high school, a friend and I sailed to London to study piano with our beloved high school piano teacher. But I began to hallucinate there–seeing and hearing things that other people did not. Every day, I went to the National Gallery and would stand for hours, becoming lost in the paintings and experiencing euphoric highs.

My view of reality was altered. The colors around me were unrealistically bright and colorful, and objects that should have been still were moving. Flowers and trees were singing. I wasn’t scared, but just lost in this alternate reality. I was present, but had no emotions.

My friend and my piano teacher took me to the airport one night, and put me on an airplane bound for New York. After we landed, I somehow managed to make my way to Philadelphia, where I looked up an old boyfriend and spent the night in his apartment.

I heard a chorus coming from the corner of the ceiling. Then I saw someone sleeping next to me with dark hair but when I tried to see who it was, the person vaporized. I began listening to a symphony on the radio next to my bed. When I woke up in the morning, I found that the radio was not plugged in.

I told my old boyfriend that something wasn’t right. Next thing I knew, doctors were examining me in the local emergency room. After showing I was disoriented, I was admitted to the psychiatric unit of the hospital. The emotional pain hit me with such intensity that I couldn’t even talk. For the next few weeks, I experienced excruciating anxiety, more painful than any of the major surgeries I later had. At one point, I tried to puncture my wrist with a tweezer I had smuggled in. I was now on fifteen-minute checks.

One morning, I was walking past the nurses' station and saw my chart on the desk. The word written on top jolted me. Schizophrenia. But my reaction may surprise you. I felt relieved!  I thought, “The shadow has a name! Something can be done about it.” That marked the beginning of my recovery.

Interestingly, my psychiatrist, Dr. Grofe never asked me if I wanted treatment. He simply loaded me up with Thorazine, which at that time was the only tool in the psychiatric toolbox. I was given 600 milligrams, four times per day. It made me feel like I was walking under water. But I took it. I never thought to do otherwise. In those days, “patient rights” were not considered. It took me several months to achieve stability. It was not long before I was ready to leave the hospital.

Fast forward…

I enrolled in a music class at the university, and was assigned to accompany a young cello student named Jenny K. After a performance of the Lalo Cello Concerto, she took me to lunch at a Chinese restaurant in downtown Ann Arbor. While we were eating, Jenny told me about a group of young people living on yachts in the Mediterranean who were saving the world. She told me they had a cure for my mental illness and were a hundred years ahead of psychiatry. I didn’t know at the time that I was falling victim to a cult. I just wanted so badly to be cured. And sailing around the Mediterranean sounded so exciting. 

After being thoroughly brainwashed I remained in the cult for twelve long years, until I had another psychotic break. When the cult realized my mental state, I was imprisoned in my hotel room, with guards stationed outside my door 24/7, in eight-hour shifts. I was not allowed to leave my room for many days. Then, one day, the cult had me flown from Tampa, Florida, to Madison, Wisconsin, where my parents were now living. This process was called “being offloaded” in the cult. According to their dogma, I would be dead of pneumonia within a few days. 

I was again experiencing the excruciating pain of a breakdown. I was hallucinating constantly. Every day, I tried to walk around the block around my parents’ house. I couldn’t do it. The terror was too great. But each day, I walked just a little further, until one day, I made it all the way around the block. I was so proud of myself.

In the fall of 1981, I enrolled at Eckerd College in St. Petersburg, Florida.  They had a program where I could do all the work at home. I actually did some of my work while in the local mental hospital, where I went when I was “losing it.” I had to laugh because Eckerd College gave me four credits for my mental history under Psychology 101, and four credits for my cult experience under Religion 101!

In 1984, I was awarded a Bachelor’s degree in Human Resources. Then, I took the GRE exam with a score of 1300, and got a full scholarship to Florida State University in Tallahassee. In 1987, I earned a Master’s in Social Work (MSW) degree. I spent the next twenty-five years working as a hospice social worker, and loved it.  

If Dr. Grofe had not given me medication to treat my psychosis in 1966, after my first major breakdown, my outcome might not have been so successful. I could not have made an informed decision for or against treatment because I didn’t even know my name.

It hasn’t been an easy road. In the years after I got out of the cult, I had over fifty hospitalizations, over fifty psychotic episodes. Yet, as I look back, I have had a full life, and with a good, but not perfect, recovery.

I still take medication, at seventy-five years young, but this is a small price to pay for the full and rewarding life I have. And regarding my rights, I had a right to treatment, not to refuse treatment. I was too sick to know what I needed.

I thank Dr. Grofe for his understanding about my need for medical intervention, and for medicating me without my consent. He did the right thing.

Whatever time I have left will be spent in advocacy for those with serious mental illness. Our “mental health” system is broken. We can continue to ignore the obvious reality every time we walk past, or step over, the disheveled person sleeping on the sidewalk. We might turn away from the person sitting next to us, smelly, on a city bus. Or we can speak out.

My friends, who are like family members to me, are starting to organize for better treatment of people like me with severe mental illness, some of whom are in jail or prison, and some sleeping on the streets of our cities. When I see them, I always think of the phrase, “for the grace of God, there go I.” 
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All I had to do was swallow the medication. Thank God I did.