Reia

Researcher on OCD and Early Psychosis: Rhea

See the condensed version in Newsletter Issue 21.

I was born in Potsdam, New York. When I was growing up, I showed warning signs of my illness, but they were dismissed as “spunk” or an overactive imagination. I graduated from high school early because I was academically advanced and I felt out of place in the rural, conservative town. I needed a change and chose to attend the University of Southern California (USC), where I received a full-tuition scholarship, and where I could pursue both my mathematical and musical interests.

My first semester was wonderful, and I made friends quickly, but I was soon diagnosed with mononucleosis and had to withdraw. During my second semester, my “spunk” and active imagination evolved into a full-blown psychotic disorder. By the time I returned home for the summer, I was convinced I was a computer and that the rest of the world was possessed by aliens trying to eliminate me.

I began to have the dual and seemingly contradictory symptoms of extreme suicidality and fear of getting killed. I would spend all day in a chair, trying not to kill myself, but when I was spoken to, all I wanted to do was to run away. Paranoia was all too present, with my beliefs that everyone was talking about me and conspiring against me. I frequently heard disparaging whispers and had visual hallucinations of a man threatening me. I often “switched dimensions” and had experiences in other worlds that existed only to me. I remembered different things than what the people around me recalled, or I failed to remember many events. I wasn’t safe in the world, and I wasn’t safe in my mind.

The psychiatric care in Potsdam was inadequate, and my doctor, one of the few if not the only outpatient doctor in the county, informed me that her next available appointment was in three months, despite the severity of my suicidality. The psychiatrist told my parents that I would need a friend for the long road ahead and recommended a dog. I named the dog Kiwi. He would become the center of my life, as well as a major support for my mother when she would later be alone in Los Angeles caring for me.

It didn’t take long for me to wind up in the processing room for the closest psychiatric hospital, which was 40 minutes away. I contracted for safety (signed a document where I said I would not kill or harm myself) and was allowed to go home. But, soon after that, I found myself at risk for suicide. I told my parents and was brought to the second-closest psychiatric hospital, two hours away, because my parents were unhappy with the kind of care I had received at the other hospital.

During the first activity of the first day of my stay, I was told: “We see kids like you all the time. You will be in here three days and won’t ever have to worry about it again.” If only! It was years before that lack of worry was within reach.

I was insistent on returning to USC as if nothing had happened. My mother came to Los Angeles with me, supposedly just to get me settled in. She never left, afraid for my safety. I went to an intensive outpatient program every day, had an active extracurricular schedule, and took 18 units of classwork at USC. I have often looked back at that semester and wondered how I managed to juggle all that, but I think I had to. I had to stay as busy as possible or I would be alone with my thoughts, and my thoughts were scary.

One night, when I was at my mother’s apartment, I began to get angry. Then, according to my mother, I stopped making sense. Random words were coming out of my mouth, and the fact that she couldn’t understand them was making me more agitated. I began to cry. My mother took me to the hospital, where I was held involuntarily, given the prognosis of “grave,” and diagnosed with bipolar-type schizoaffective disorder.

I would stay there for a month, on a one-to-one for much of that time (I had a nurse watching me 24/7, even when I showered, used the bathroom, and slept) because I tried to hurt myself in the hospital. I took my final USC examinations in the hospital, receiving 4 A’s and a B+. I was in the hospital for Thanksgiving but out before Christmas. I briefly stayed in a residential program afterward but found it unhelpful.

I took the next semester off, relocating to Boston for programs at McLean. Doctors recommended electroconvulsive therapy (ECT), but the anesthesiologist would not sedate me due to my gastroesophageal reflux disease (GERD) and his fear that McLean, as a psychiatric hospital only, would not be able to help me if I were to be sick during the procedure. I was admitted and stayed inpatient at McLean for a bit, until they found a bed at Newton-Wellesley Hospital. I received 20 treatments of ECT, working with an anesthesiologist over a two-month period. I consider this to be one of the big mistakes of my treatment journey because my brain felt “different” afterward and I was still suicidal. I also gained 50 pounds during this hospitalization because I was bored and spent my days snacking in the pantry.

Post-discharge, I began a program at Boston University’s Center for Psychiatric Rehabilitation called NITEO. The program aims to aid college students on leave due to mental illness. I went back to USC for an unremarkable semester but returned to Boston afterward for transcranial magnetic stimulation at McLean. I received this treatment outpatient, so I was able to intern at NITEO, serving as a mentor and confidante for other students and teaching the music and Photovoice classes. I found that even though I wasn’t better, I was a master of compartmentalization. I was able to talk to the students and keep the attention off me. It was also very helpful that I knew all the adults there and they were very understanding if I simply couldn’t be present for a day.

I realized USC was just not going to work, as much as I wanted it to. I transferred to Columbia University and began ketamine infusions. Initially, they were remarkable. Suddenly, I did not want to hurt myself anymore. And while my depression was not gone, I stopped feeling like life was pointless. The psychosis remained unchanged, but life was much easier without the constant suicidality. The effects started to wane after a bit, and ketamine lozenges were added to supplement the infusions. After one terrible treatment that left my brain feeling “broken” for a short amount of time afterward, I decided not to continue with the infusions since they were no longer efficacious, and I feared their effects.

I got by for a bit, not thriving in school and needing constant care from my parents, but managing to stay out of the hospital.

Then I began clozapine and everything changed. It took a while to get me stabilized on the dosing, but after a few months life got easier for me. I could suddenly manage my schoolwork, my hallucinations decreased, and most notably, my previously persistent paranoia waned significantly. No longer was I afraid to go to class, thinking my classmates were poisoning me or that strangers on the street were plotting to eliminate me. My suicidality also decreased even more. I began to get A’s, which I hadn’t managed to do previously at Columbia. There were downsides: side effects like excess saliva production and extreme fatigue, which required more meds to control. I still had significant depression, which I managed by staying busy, trying to stay out of the apartment, and spending more time with Kiwi. I eventually graduated in May 2020 with a BA in sociology.

I had planned on going to vet school, but after volunteering at a clinic, I found I got too attached to the animals. I began a master’s in disability studies at the City University of New York, graduating with a 4.0 in May 2022.

I now live alone with Kiwi, do research on OCD and early psychosis at the New York State Psychiatric Institute and look forward to applying to PhD programs. I try to take Kiwi to the dog park at least twice a day so he and I can both socialize. I don’t have a perfect life, but there are moments when I look around and am so glad that I am alive.