I was taking the subway when I finally broke down. I wandered into a pizza place, and then cried my guts out. Cops came and drove me to the hospital. When there, I got a new diagnosis of Schizoaffective disorder with bipolar features. They put me on meds and sent me home.
I finished the rest of the year in a daze. Halfway through my degree, I left college with no intention to ever finish. I returned back home to New York, where I stayed with my mother. She had always provided sanctuary for me, and continued to do so now.
For several months, I didn’t do much. I used the Internet to socialize with people, and I listened to Queen and only Queen. The lyrics really spoke to me. In the winter that followed, I took a job as a violin teacher at a music store. I was a good enough teacher, so I decided to go back to school to become a K-12 public school music teacher.
But about halfway through the degree, I began to break down again. I was still taking my medications though. This time, I thought I was the reincarnation of Beethoven. I went back to the hospital, and was forced to quit school. Yet again.
I then applied for disability and was accepted. I felt too exhausted to look for work, and I didn’t even know what I wanted to do. I was tired of music, but music had been my entire life until now. I felt like I couldn’t do anything else.
I began to simply float through life, which was okay at the time. Feeling creative yearnings, I wrote poetry and songs with guitar, which I performed at various open mics in the city. I became acquainted with many people, but felt excluded from social circles. I had become obese because I gained weight from a medication. I was probably excluded because of being unattractive, and also due to my eccentric behavior. I was open about my illness.
Eventually, relapse happened again. I thought I was Beethoven, yet again. The in-and-out cycling through hospitals was becoming a way of life for me. A grim prospect, and yet a very real one. Hospitalization, release, inability to work. Still, I changed my diet, and was able to lose weight. I signed up for a kickboxing class to continue in this vein, but then became infatuated with the instructor within two weeks. The red flags didn’t go off. After two months of this, I was convinced again that I was Beethoven, and that my instructor was my long-lost soulmate. I even proposed to him by giving him a little polymer clay pendant from Etsy.
Eventually I took myself to the ER. While waiting in a room to be processed, I started to get commands from a voice claiming to be Barack Obama. He told me to retrieve my belongings from behind the security desk. Among my things were journals I wrote, containing information that was the key to saving humanity. I followed his command, and then I blacked out…
I was now laying on the floor with about seven people trying to pin me to the ground. My arms and legs jerked uncontrollably, and a blood-curling scream escaped from my throat. I was unable to control my body. It was doing these things without my permission. I started screaming that I was Beethoven. I was quickly injected with a sedative, and then hoisted up onto a bed with restraints. As they tied me down, I felt a sense of relief. I didn’t want to attack anyone.
“I love you, I love you! Thank you so much.” My mind was swimming with thoughts, and I was lost in psychotic fantasy. My arms and legs continued to jerk as I fell asleep.
I was then brought to a psychiatric unit. During this time, I was molested by a man about twenty-five years my senior. I didn’t resist the flirting and attention from this guy, because he was overly assertive and bombarding. It was so wrong though. The hospital did nothing to stop it either. I, suffering from schizophrenia, was forced to deal with a horny someone who had signed himself in due to stress. For him, psychiatric hospitalization was summer camp. So many people just don’t understand.
After four weeks, I was discharged. But instead of enjoying wellness, I was immediately again attacked by delusions and voices. This time, a voice told me that I was the Anti-Christ, and that I was personally responsible for the suffering of every creature that has ever lived. The voice tormented me non-stop, and at about 3:45 AM, I was commanded to leave my apartment. I had no choice but to follow. The voice told me to leave my keys on the floor outside my door, so that my mother could get in to my dog. Because I was about to die. That is what I was told.
I walked outside, and I felt my body wanting to throw itself into traffic. I was on the brink of losing control of my body again. I found a truck with a metal cart attached behind it, and I grabbed onto it for dear life. But then I started to fear that I would turn into metal. I could avoid death, but being a metal statue, living inside, would be a hellish punishment as well. No matter which way I turned, I knew that I had a fiery, hellish fate awaiting me.
Suddenly, I thought I was a dog, so I peed in the street. I then realized I needed help. Luckily, I had my cell phone, so I dialed 911, and soon an ambulance arrived. I told them what happened, and they drove me to the hospital. A different one from where I had just been, thankfully.
I stayed at this hospital for over two months. I was very ill, and progress was slow. The doctors put me on Clozapine. Although I improved, I kept having crippling panic attacks, which caused my treatment team to keep cancelling my discharge dates. After six weeks, I was given horrible news:
“We are applying for you to go to state. This is more permanent hospitalization. We think you can improve, but we have to do this because you have been hospitalized for a good amount of time already.”
Frantic, I tried to figure out how I could get discharged. Remembering from before that I took a medication that really worked, Effexor XR, I requested of my treatment team that I be put back on it. They did so right away, and the panic attacks began to go away. After about six weeks, I became well enough to leave. I felt like I had escaped a prison sentence. This experience was my first taste of mental health self-advocacy.
I must mention a certain person I met during my hospital stay. On two occasions, a woman named Trina* visited my unit and gave a presentation about her mental illness, sharing her story. She was a representative from NAMI, a not-for-profit organization dedicated to creating awareness for mental illness. Her story moved me. She also imparted a message that recovery from mental illness is possible, which I had never considered before. I was completely intrigued, and so I approached her afterwards. We exchanged info and kept in touch. I called her on the phone often, and she told me that I would see the light of recovery in my own life.
After leaving the hospital, I attended a partial hospitalization program, where I attended six hours of group therapy five days a week. When this finished, I joined an IPRT day program, where I remained for the next nine months. I befriended many friendly people, and the program provided structure to my schedule. The groups ranged in topics, from developing non-verbal communication skills to self-inventorying to see what jobs we wanted.
During IPRT, I heard about the career of peer specialist. A peer specialist is a mental health professional who has mental illness him/herself. The idea is that a person with mental illness can relate to people with mental illness better than a psychiatrist or social worker, because they have actually gone through it themselves. I learned about a free-of-charge peer specialist training program at a place called Howie the Harp Peer Advocacy Center. I applied, and was accepted. I had no idea of what was in store for me. Miracles.
The program was intense. I had classes five days a week for a solid five months. The commute was a solid two hours each way, but it completely was worth it. I not only learned about the work of peer specialist, but I also learned the ways of mental illness recovery, and how to apply it in my own life. Howie the Harp truly changed my life, and also gave me a passion and a voice. I know now that I live for fighting stigma against mental illness.
After Howie the Harp, I did an internship at a great agency, closer to my home thankfully. After the internship, I was hired to work there full-time. Now I have been working full-time for a full year! It feels wonderful. In the past, I always felt beat up by my illness. And it went on for so long, relentlessly, that I felt that I would never live a “normal” life. A life where I could work and earn money, and make meaningful, non-paranoid friendships with people. But I have now accomplished my dream: being a productive member of society. But as I learn about “productivity,” I realize also that a disability does not define a person. Everyone has value. Everyone deserves “kindness, dignity and respect.” These three specific words were pasted to the top of the blackboard in the classroom at Howie the Harp, and these words ring true for all of us.
I think about my future now, and where I want it to go. I love my work as a peer specialist, and I have made my job into something unique and personal. I run an art group once a week, and I also write songs with clients. Now my talents are being put to use! For me, performing on a stage where people pay to buy tickets… this doesn’t change people’s lives in a way meaningful to me. But bringing music to people who struggle with mental illness, people struggling against a society that denies our humanity… that is change. I want this to be the future. Using art as a tool to enhance the quality of people’s lives. Every person should have the right to creatively express him/herself. It is empowering, and imparts a sense of self-worth and confidence. Everyone has a unique voice, and no one should be stifled.
Neesa Suncheuri works as a mental health peer specialist in New York City. She has an extensive background as a classically-trained violist, but now is a singer/songwriter performing at various dives with friends. She writes poetry for Organic Coffee Haphazardly, and runs a Facebook wellness group called “What is Wellness? A Mental Health Discussion Group.”
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