Learning to survive — and thrive — with mental illness


I have a mental illness. I was diagnosed in 1973 during my freshman year at the University of Wisconsin in Madison. People prone to mental illness usually have their first episode between their late teens and early 20s and it’s triggered by extreme stress.

I was very stressed. I could not concentrate on my studies. I was convinced that other people could read my mind, and that I was able to read theirs. I would stay up late at night thinking and thinking. I couldn’t turn the sound down in my brain. When I came home for Thanksgiving break, I barely spoke. Everyone thought I just had the wrong attitude. No one knew just how intense and alienated I was feeling.

During winter break, my parents took me to a psychiatrist. After I told him my story, he suggested hospitalization and Electroconvulsive Therapy (ECT). This terrified me. I wound up going into the hospital, but I didn’t get ECT. I came home, armed with many pills for my illness and even more for side effects. I had dry mouth; I felt drugged; my hands shook; my mind was foggy. I was not able to wake up at a decent hour of the day. I had few friends. I was embarrassed about the way I acted around other people. It was supposed to be the best part of my life.

Soon, as difficult as it was to face, I had to accept that I would be on medication for the rest of my life. I realized I couldn’t live away from my parents, so I enrolled at Webster College. Still, I was becoming more and more alienated. Thanks to my dad, I didn’t drop out, as much as I wanted to.

During my junior year in college, I couldn’t take the noise in my head anymore. So one day, I went to my parent’s medicine cabinet and took a bottle of sleeping pills. I swallowed the pills, lay down on the bed and started feeling sleepy. All of a sudden I realized that I was going to die. I don’t know how I did it, but I called 911 and was taken to the hospital to have my stomach pumped. The doctors told my parents that they loved me too much; that was my problem. My family had no one to walk us through all of this.

A month after I graduated from college, my father, at 57 years old, passed away. It was a horrible shock. He really believed in me, despite my limitations.

As the summer wore on, I was deteriorating rapidly. I couldn’t cope with anything. I cried a lot because I was so critical of myself.  

I got married; however, it didn’t work out and we separated after seven years. Unable to cope with the stress, I went into the hospital again. After a month, I was discharged, and then readmitted for another month. During the second stay, I agreed to ECT. After my series of treatments were over, I started feeling a lot better.

I also started seeing a new psychiatrist and a new psychologist during this time. My psychiatrist was great with medicines, which had improved from when I first got sick. He knew how to juggle and mix the different meds so that most of my symptoms were being treated. I also found out that what I had was called “Schizoaffective Bipolar Disorder.”  No one had ever told me before what kind of mental illness I had. My diagnosis, as it turned out, is basically a “garden variety” of many kinds of mental illnesses; manic depression, obsessive-compulsive disorder, anxiety and psychosis.  

While manic, I have had spending sprees and did dangerous things. With obsessive-compulsive disorder, I check certain things more than once. Anxiety is the fear of not knowing what the future will be. And with psychosis, I don’t hear voices outside of my head but rather have a running commentary going on in my head. It’s much better now, but for a long time, I couldn’t stop thinking negative and critical thoughts about myself and other people. I was afraid to trust anyone with my thoughts because I felt so ashamed by them.

In the meantime, I worked at a couple of non-profit agencies. My career was actually going well. However, the stress of working a full-time job was really getting to me. I couldn’t cope with my symptoms. I was ashamed and felt awful.

Right before my divorce went through, my mom passed away and I was left to take care of myself. I had never been in this position before. I sold my house, moved into my mom’s condo and began reawakening slowly. I was seeing a great psychologist who helped me tremendously. I still had low self-esteem and felt ashamed. And, of course, I assumed that other people were picking up on that and thought less of me, too.

It’s taken me a long time to come to grips that this is not my fault, my parent’s fault, or the result of an experience I once had. It is an actual chemical imbalance in the brain. Mental illness is nothing more than a brain disease. And because it remains so mysterious, it’s stigmatizing.

Doctors still do not know a lot about the brain. Some of the medicines I take today were not available when I first became ill. When one is diagnosed as mentally ill, many people experience a great sense of shame. Suddenly we have these bizarre thoughts and feelings. It’s embarrassing to tell people about it. Do they think we are acting weird and don’t want to be seen with us?  Stigma affects treatment. You often hear that a person with a mental illness has stopped taking his or her medicines, and it caused him/her to do something dangerous.  I think people refuse to take their medicine because of the stigma of mental illness. If the stigma were not there, perhaps more people would accept treatment and be aware of when an episode is coming on.

In the late 1980’s, I signed up to take a photography class. This class changed me. I found an outlet for my imagination. I began putting together a portfolio. I developed relationships with other artists and began exploring ways to express myself with my camera. Soon afterwards, I began a spiritual support group for persons with a mental illness who were Jewish. It was called “Achraiyut,” which in Hebrew means “to assume responsibility.”  It was for people who accepted that they had a mental illness and chose to get on with their lives. This group was the first of its kind anywhere.

I began getting involved with the Missouri Department of Mental Health. I helped to get the voices of people with mental illness heard when decisions of policy and rules were being made.

I was doing a lot of interesting things at this time. I created and coordinated a series of photographs taken by people who were mentally ill and had once been homeless. I also had my first solo photo exhibition. I was on the cover of The Riverfront Times.

I was named one of the “Ten Outstanding Young St. Louisans” in 1994 by the St. Louis Jaycees. Soon, I was contacted by every major news source in St. Louis. That triggered an episode. I wanted to go to the award ceremony in Tulsa, but I was so afraid of making a spectacle of myself. My brother and sister agreed to meet me there, and that was reassuring. I was treated like royalty. I was a role model. It was amazing.

However, I knew that when I was going to get back to St. Louis, I was going to have to go into the hospital. I was there for six weeks, a long time for 1996.

A few years later, in 1998, I was having a photo exhibit at the University City Public Library. A man, whom I had seen at my synagogue, Congregation Neve Shalom, showed up. Later on that year, I started taking a meditation class at Neve, and this man would come there, too. I could tell he liked me, but I was shy and not very sociable. However, I began to realize what a wonderful man he was. We dated for about a year. Next month, we will celebrate our 10th wedding anniversary. He makes me laugh all of the time. He “gets” me.

I am still struggling because I tend to cycle — I will do really well for a few weeks, and then I’ll have a few bad weeks. When I’m not doing well, it’s just me and my mental illness. I can’t remember what it felt like to feel better

Currently, I am working at Mental Health America of Eastern Missouri as a Certified Peer Specialist. I work with people who have a mental illness who provide services for other people with mental illnesses.

So that’s where I’m at now. I’m not cured. No one is ever totally cured of their mental illness. But I am doing so very much better. My medicines are doing good work. I have a wonderful therapist. And I always think of how lucky I am that I have a safe, warm home.

So, the next time you talk to someone who might be acting a little odd, may be unkempt or may keep to himself, know that a person is in there and didn’t ask for this to happen. We all have a chemical imbalance in our brains to some degree. People with mental illness are just more sensitive.