Personal Stories

Tuning Out Stigma

by Theresa San Luis

The scariest moment in my life was telling my best friend in college at the University of Notre Dame that I was going to the hospital diagnosed with psychosis. But to my great relief, my fears were met with compassion, care and concern. And when my mother found out, she was devastated and wanted to visit me in the hospital. Likewise, when my other good friends at Notre Dame eventually found out about my hospitalization, they were equally devastated upon hearing the news, as if I had almost died. I could not believe the amount of empathy I received for what I had gone through in their reactions. Thus, I grew in courage to be able to share about my disability slowly to more and more people.

Today, I am a survivor of three hospitalizations since being diagnosed at age 19 with schizoaffective disorder. One of them occurred during graduate school at Southern Illinois University at Edwardsville in public administration. I was able to work with the disabilities office, professors and faculty for proper accommodation, and maintain my two part-time jobs and 4.0 GPA. Though it was a huge struggle and ordeal for me, I was inspired by my support and strength in God to get me through. I had my eyes set on the prize: my testimony to be made powerful through a graduate degree with straight A’s, for I had lost my confidence in my abilities many years ago since being diagnosed with mental illness.

Today, also, I am a public speaker through NAMI sharing my recovery story. I have appeared on TV live on PBS to share my testimony and on KSDK as interviewed by Art Holliday, Emmy Award winning reporter. I’ve been able to weave into my story my musical skills as I earned a music degree from the University of Notre Dame in 2001.

Last year, I founded “Tuning Out Stigma” presentation program partnering with NAMI Southwestern Illinois (SWI) where I share my story at universities and how I’ve coped with my illness. As a composer of music on the piano and a former student of a Chicago Symphony Orchestra violist, I play my original melodies for each of the phases of my recovery.

For instance, for the Dark Days portion, I play “Lament for My Friend” piece, a very sad song I wrote. For the Acceptance phase of my recovery, I play an unnamed piece I wrote when I was 14 years old that is somewhat dark and majestic. For me that phase shows acceptance of God’s will in my life and submitting to his plans by reaching out for help. For the Treatment part, I play a lullaby I wrote for my nephew Colin, because it is reminiscent to me of the discovery and revelation that I experienced in the hospital when I was on medication for the first time. For Coping Skills, I play another lullaby I’ve written that is very peaceful. To me, having peace and a gentle mind of recovery was the way to go. Finally, for my Successes, Hopes and Dreams phase, I play “Leap of Faith,” a piece written about pursuing my dreams and highest aspirations.

I cap off my musical program with a spectacular and diverse medley of music I’ve learned over the years during piano lessons. The pieces I play range from Beethoven’s Fur Elise, Joplin’s The Entertainer, Mozart’s Sonata in C, Heart and Soul, and even a variation of Chopsticks. Then, I play “Turkey and the Straw” on the viola.

For the last part of “Tuning Out Stigma” program, NAMI SWI board members, staff and volunteers take part alongside of me to answer questions from the audience.

I’m very proud to collaborate with NAMI SWI that has been incredibly supportive of my vision to inspire audiences with my music and story. I have successfully launched the program at SIUE and Lindenwood University-Belleville with the organization’s help. I try to share in my presentations what I’ve learned over the years and what has helped me. Never giving up is probably Rule #1 to me. I’ve been through incredible difficulty, but once a person starts to give up I feel like it’s almost like you’re giving up the battle.

For instance, I’ve experienced horrible side effects of certain medications that were scary and insufferable to go through for years and years. At one point, I almost had nothing left in me to continue, but a dear friend referred me to a very excellent and reputable psychiatrist in the St. Louis area, and switching to him for treatment changed my life. He, Dr. Luis Giuffra, recommended medications that would be far more effective than the medications I was on. It worked and the debilitating anxiety attacks I had suffered as side symptoms have nearly gone away. Otherwise, before that, I’d battle through intense and awkward OCD thoughts for 3-5 hours every other day, and I was almost going to apply to go on disability rather than being employed full-time.

Also, taking in mentors and others that can coach you through life is greatly helpful. At SIUE, a university setting where I felt very supported, I was assigned to be mentored by associate vice chancellor of student affairs, Lora Miles. She volunteers for the mentoring program at SIUE through the Disabilities Support Services office, and once we were matched and met, I just knew she was a really good person to know. She has inspired me to believe in myself, a missing link in my life since being diagnosed with mental illness. In addition, she challenged my perspective that I was not marriage material. I’ve ended up trying to turn my life around since meeting her, and two years later, I found love in St. Louis, and am engaged to a pastor. He, Nick Teller, was called to and leads a Lutheran church in the San Francisco bay area. I will move out to the region after we wed in April 2018.

Sometimes loving yourself and being happy on your own with a positive mindset can change things around. Definitely, with a positive attitude, you can discover the hidden treasures in life, and others can discover the beauty inside of you.


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