Emerging from Disability

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In 2020, I am celebrating 12 years of full recovery from schizophrenia. I work, volunteer, and enjoy meaningful relationships. But this was not supposed to happen: When diagnosed in 2007, I was told I was permanently and totally disabled.

I know how it feels to be totally disabled. I know what it is like to hear voices in my mind commanding me to do things such as look for food in the garbage, walk to the right or left, or scream. Antipsychotic medication changed that. When the command hallucinations stopped, my behavior changed. Although I was still affected by residual voices and noise in my mind, my doctors determined I was safe to leave the hospital and live in the community. Then, despite the debilitating side effects of my medication, my doctors voiced satisfaction with my level of recovery.

Prior to my illness and before beginning medication, I was always busy practicing the violin or piano, reading, or studying for classes. I watched very little television and enjoyed a meaningful social life with church friends and my family. I was energetic and excited about the future.

But on my first antipsychotic medication, I was sleeping 16-18 hours a night and waking up exhausted. While I was awake, I was either eating (the medication made me ravenously hungry) or watching television. I could not even enjoy or focus on television programs because of the untreated residual hallucinations in my mind. It was as though I were listening to a radio tuned between channels, with just background noise. I doubt I could even have described most of what I saw on TV. I lived in a world of partial recovery and dragged myself through each day.

I enjoyed some limited activities. I managed to go to my parents’ church, where people were kind. I played violin a few times at their church, as I still had some basic skill, although, sadly, I had more skill at age 12. One church family picked me up so I could volunteer for a couple of hours a week at a local nursing home.

Being out in the community posed many barriers. My medication caused me to salivate excessively. I would often spit at people when trying to speak. I was too tired and drugged to engage in any meaningful conversation. I was an empty shadow of who I used to be.

I could read, but I could not retain the information or study. My mind was too out of focus to practice violin or piano for more than a few minutes at a time.

After a couple of months of living like this, I saw a new psychiatrist, and he changed my medication. Unfortunately, the new medication offered little improvement.

I remained in a deep mental haze induced by my medication for 12 months. At the same time, the medications did not take away the voices that were constantly screaming at me in my mind. I had reached the low point of fighting for recovery.

Today, in 2020, I have enjoyed my 12 years of recovery, thanks to finally finding a medication that worked for me. It quieted my mind and enabled me to focus. Since then, I earned a bachelor’s degree with honor from the University of Cincinnati in molecular biology. I published my memoir in 2014 and now run a foundation with the same medical school professor who gave me a trial of the underutilized medication that essentially saved my life.

Today, I am especially passionate about helping others with schizophrenia emerge from disability.

There is so much complacency in the field of psychiatry. Looking back, I can hardly believe that when I was just existing, and blankly watching TV every day, my doctor considered that life to be good enough. My first treatment team told me that I might be on ineffective and debilitating medications like the first one I tried for life. I wondered, did they have such low expectations for everyone?

Many people with schizophrenia have great potential. For me, the illness was like a deep fog. I couldn’t study molecular biology or play the violin well, but when I began the right medication, it was as though the fog dissipated, and these skills came back. I was able to score A’s in college again and perform on the violin at a high level.

I hope more young people will avoid the acute disability I faced through early intervention and effective medication. I would encourage you to never give up until you’ve reached your highest level of recovery possible. Never stop trying to improve your life. And if you’re a clinician, never lower your expectations for the people in your care.