Redrawing Our Image
of Schizophrenia

Schizophrenia is not what it used to be

by Meghan Caughey

(June 2, 2005) - OREGON -- Schizophrenia doesn't look like most people's pictures -- not the mother murdering her children, not the killer planting a bomb or the raving lunatic. We are all somebody's daughter, sister or somebody's neighbor. Everyone has been touched in some way. In my life, I have been given the opportunity to come back from the chaotic world of schizophrenia and have lived through the treatments of our day, which were, sadly, sometimes worse than the disease itself.

My story is one of success and overcoming hard times. I write it because there are many people out there who are like me. They need to hear that schizophrenia is not what it used to be, even 10 years ago. People with schizophrenia can expect to have a life that has beauty and quality. They can leave the hospitals behind. This is my belief. It is my goal, by how I live my life, to help redefine what is possible for those of us diagnosed as schizophrenic.

When I was just 18 years old and away at college for the first time, I started having the first symptoms of the disease -- seeing people's faces distorted into insect-like forms and hearing voices saying threatening things. One snowy night, I was found by some classmates barefoot in an early snow. They took me to the school's health center where I was eventually diagnosed as being schizophrenic and put on the drug Thorazine. Later that year I would be hospitalized for six months, and at that time I received electroshock therapy, insulin shock therapy and much more medication. That was the beginning of my journey through the mental health system of this country.

I was continually being prescribed medications, and that meant severe side-effects. I would sleep 18 or more hours a day, or sometimes felt so restless that I could not stop moving my arms and legs, like I was going to jump out of my skin. Some drugs gave me blurry vision, made me twitch, and some made my hands shake. One side-effect that greatly damaged my self-esteem was the weight gain that many of the drugs caused. I hated how the side-effects changed my body, even though I needed the medication to help me function in society. Nevertheless, I would often stop taking the medication and end up back in the hospital, with the psychosis raging out of control, only to have to go back on medication and start the cycle all over again. At times, the side-effects became more debilitating than the disease itself.

This pattern of going in and out of the hospital, and off and on medication was repeated more than 100 times over the last 30 years of my life. I couldn't hold a steady job and my marriage ended in divorce. Several times I tried to simply end it all. But that was not to be the outcome.

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Twenty five years ago, I stood before a large audience at a public hearing and testified passionately against the use of psychiatric medication. I was adamantly opposed to its use based on my own personal experiences, but things changed about six years ago when I learned of a new medication, called Geodon, being tested that effectively controlled my symptoms without the unwanted side-effects. It did not cause weight gain. At that point I had gained about 100 pounds from taking other medications and was desperate to do anything I could to change my life. I eagerly enrolled in a clinical trial for the new medication, even though it meant traveling from my home in Oregon to Los Angeles.

My symptoms improved and I started to lose weight. There were no side-effects. The trips in and out of the hospital stopped completely. I wanted to participate in life and be socially active with my family and friends. People I knew could also see the change in me. I took up gardening and transformed my yard into a green haven, with beds of irises, stands of bamboo and a koi pond.

My garden is a metaphor for my life. It has been nearly six years now since I started that clinical trial. My life now doesn't resemble my old life. For one thing, I'm 100 pounds slimmer, and you know that makes a person feel good. But the really big change has happened in how I see myself. I once saw myself as "Meghan the Schizophrenic." That was my identity, but not anymore. Now the illness is just a small part of the whole picture. I'm getting back to teaching, I'm painting up a storm, I'm out in the world, and I'm enjoying it.

It's my goal to get the word out that this is possible for people with schizophrenia. Currently, there is a controversy about forcing patients to take medication against their will. My position is that we shouldn't be putting energy into forcing people into taking drugs, but into developing better drugs that don't have debilitating side-effects, which people will naturally want to take because they help. I used to think my future would only be trips in and out of the hospital.

That's all in the past. It is time for a shift in how we think about schizophrenia and every time a new plant pokes its head up in my garden, I know that I'm helping make that happen.

Meghan Caughey lives in Eugene, Oregon.

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