בתאני אייזר

My name is Bethany Yeiser, and thanks to clozapine, I have been fully recovered from schizophrenia for the past 15 years. Two days after my first admission to the hospital, my parents were told I was permanently and totally disabled. But today I live in full recovery.

My History and Recovery

I experienced a happy childhood with loving and supportive parents and a brother who was a year and a half younger than me. I thrived in high school, and my passion was the violin. At age 13, I began practicing for four hours a day, joined the Cleveland Orchestra Youth Orchestra, and was accepted as a violin student of a music conservatory professor in downtown Cleveland.

When it was time for me to consider colleges, my first choice was the University of Southern California (USC) in Los Angeles. As I traveled there to visit, suddenly, it felt as though the whole world had opened up to me. I could be a geneticist, or an engineer, or a mathematician, or a physicist. When USC offered me a half tuition scholarship, I was sold. My new dreams were unfolding.

The summer before I was to begin classes at USC, a family friend arranged for me to volunteer in a medical research lab focusing on antibiotic resistance. My research that summer would become a part of two journal articles on which I was listed as an author.

In fall of 1999, at age 17, I left Ohio for USC. Soon after my arrival there, I earned the privilege of becoming the community orchestra concertmaster. I signed up for challenging classes. I also began working with a scientist who had discovered an error-prone DNA polymerase (DNA replicator). Error-prone DNA polymerases were later found in humans and were associated with certain types of cancers.

I remember going to lab meetings every Friday afternoon. At one meeting, the professor explained that if a certain experiment led to another desired result, which led to yet another new breakthrough, a Nobel Prize could be within his reach.

I’m sure everyone at the lab ignored these comments, as they were unrealistic. But they became my world. This was first spark that began a long journey to delusions.

My second semester at USC, I gave up my concertmaster position in the orchestra to spend every minute I had free in the lab. Eventually, I found myself working in the lab regularly until the early hours of the morning. Surprisingly, I had made an unexpected and very promising discovery about the importance of a certain error prone DNA replicator, and then I dreamed of publishing my research in one of the best journals in the field.

My grades were nearly straight A’s my first semester, and I felt my classes were easier than expected, but during my second semester my grades sank because I was spending all my time in the lab. I remember getting a C- in my second semester of freshman biology, which covered biology that I had not encountered in the lab. As I became obsessed with the lab, I lost track of my priorities.

During the start of my junior year, in 2001 when the September 11 (9/11) terrorist attacks happened, my world began to look different. At that time, I began to wonder if I could make a world-wide impact by sending struggling people who lived throughout the world funding for their basic needs, as well as working somehow toward world peace.

That semester, my church sent a team of female college students and recent graduates that included me to China to visit the poor.  After landing in Kun Ming, China, the young women and I traveled into one of the poorest areas in the country. I remember thinking: “Can I help a million people in poverty in China?” “Can I help millions?” Suddenly, I had a new goal for my life, and I was convinced that, yes, a worldwide impact was within my reach. In hindsight, I realize this was one of my first delusions.

On my return from China, I was on fire to visit Africa—specifically a region afflicted with poverty in a slum area. I decided to go to Africa alone during the following summer. My parents were greatly disturbed and worried by this decision. I promised to provide them my contact information, but while I was in Africa, I felt guilty for not taking care of myself, and I was also afraid my parents would make the trip to Kenya to find me. I had no address in the slum area, and I never gave my parents a certain African woman’s phone number who could have helped them find me. I was in Africa for two and a half months. The last month, before leaving the country, I spent a week in Nigeria where I visited a prominent businessman and his wife.

On my return to USC, with renewed determination to do well academically, I moved into my dorm room, bought books for my classes, and faithfully attended lectures. I remember my first exam in an advanced molecular biology class. I thought I aced it, and I was encouraged that I was back to my high-achieving “normal self.” However, when my exam was returned to me, I found I had failed it, because all my answers were gibberish.

My mind had become a thick cloud of ruminations, like a damaged vinyl record skipping back to the same place again and again. I found that I could think of nothing but Africa, and I could not move on. At that time, despite my failure in school, I worked together with a friend to establish a nonprofit organization which we called Innovative Medicine International. Through the organization, I raised and sent thousands of dollars to friends I had made in Africa, but as my mental functioning deteriorated, I was unable to continue raising money.

A few months later, I officially dropped out of USC, moved out of my dorm room, and began sleeping in the university library. With a shattered mind, I was totally unable to study or work. I had dropped completely out of contact with family and friends. My parents tried contacting my church, my friends, and my professors in an effort to reach out to me, but I was resolute in refusing any contact. They sent me a large package which I refused and returned to them. They offered to allow me to pay for basic needs and food on their credit card. I refused. I was afraid they would somehow stop me from making a worldwide impact.

Because I had a USC identification card that still appeared valid, I was not asked to leave the library, and I slipped through the cracks for two and a half years. I also started making friends with students who regularly studied or wrote computer code in the library all night. I became an expert at washing up in public bathrooms and looking for discarded food to eat at two or three in the morning.

During the first three years of my homelessness, my delusions were the center of my existence. I continued to be paranoid of my parents. I did not realize that schizophrenia was taking over my life, as my behavior had not yet become bizarre enough to be picked up by police.

Everything in my life would drastically change on January 28, 2006. I found myself sitting on a park bench resting when suddenly, I heard some voices that I soon realized were actually coming from my own mind. I would soon experience more voices that sounded like a chorus of young students. Visual hallucinations came next. I remember looking in the mirror to see my reflection, but instead, I saw an image that consisted of a cross between my face and the character Lisa from the show “The Simpsons.”

Once the voices began, I gave up hiding in USC libraries and began living outside. My first night in a churchyard near the university, I put on three changes of clothes in layers to stay warm. Months later, when trespassing on the USC campus again, I was picked up by police and jailed for two days, which was a horrible experience. The jail was extremely crowded and dark. On my release from the hospital, I experienced command hallucinations telling me to scream and shout profanity. March 3, 2007, I was again picked up by police and this time taken for evaluation in a psychiatric ward.

When I was admitted to the emergency room for psychiatric evaluation, my parents were notified. I wondered why they even wanted to speak to me since I had dropped out of college and was homeless. But I consented to talk with my mom. Over a phone call I noticed that she said, “You are my best friend.” Not “you could be” or “you were,” but “you are.” She said she missed me. My parents arrived at the hospital within 24 hours. Their compassion touched my heart.

I was adamant that I did not need an antipsychotic medication, but after a few days, I consented to start taking risperidone. Risperidone was what some might call amazing. The visual hallucinations disappeared. Paranoia of my parents and friends was gone in a few days. Many of my auditory hallucinations also disappeared, as well as my command hallucinations. But even though my serious symptoms were gone, I still heard loud voices in my mind, like a radio blasting between channels, I never believed I had been sick or was improving.

No one pointed out the positive effects that were noticed by my treatment team on risperidone. I do not remember being told my diagnosis, or what side effects I might encounter. I did not know there were other medications that could be tried. One staff member simply told me that I would probably be on that medication for life. At the same time, I was not convinced that I even needed it. I believe he did not know me or was confused.

After two and a half weeks in the hospital, I flew home with my parents to recover at their home in southern Ohio. While I was in California, they had moved from Cleveland to Cincinnati. My parents’ friends were generous and kind to me, never asking questions about how I had spent the prior five years of my life.

However, when I arrived in Ohio, the side effects of risperidone became problematic. I was sleeping 16-18 hours a day, which I had not noticed in the hospital, thinking I was just resting because I was bored. My muscles became increasingly rigid, and I experienced akathisia, an extreme restlessness. I had a blunted affect (flattened emotional expression) and could not enjoy my favorite music or my favorite pictures because the medication had dampened my ability to experience pleasure. The absence of feeling pleasure, or “anhedonia,” was the side effect that bothered me most. I also had an uncontrollable appetite and quickly gained nearly twenty pounds.

Confident of who I was, certain that I did not need an antipsychotic medication, and unaware that the medication was helping at all, I stopped my risperidone. After a few days, I began screaming that I had to go back to California. Off medication, all I wanted was to be homeless again and “free.” I again lapsed into florid psychosis with command hallucinations and agitation, and ended up breaking an expensive violin. A friend of our family called 911 for medical intervention for my condition, and I was again hospitalized.

During my second hospitalization, a psychiatrist offered me a lifeline. He said, “Do you remember playing violin at a high level and studying molecular biology?” He said that I might be able to have these things back, but that to do so I must always stay on antipsychotic medication. He also told me that every time an antipsychotic medication is restarted it can become less effective, even at higher dosages, and that discontinuing medications was what eventually would lead to disability. I believe this is something every patient should be told on the day they begin medication.

I left the hospital after about five days, now knowing that I always needed antipsychotic medication, although a different one.

I spent the next several months totally disabled and felt like a shadow of whom I had once been. I was unable to attend school, work a job, or even participate in meaningful volunteering. My life involved sleeping, resting, and captive listening to the voices in my mind. I lived as a totally disabled person for 12 months, even while enduring trials of different antipsychotic medications.

At that time, when all hope seemed lost, I was referred to a schizophrenia expert named Dr. Henry Nasrallah. From the start, Dr. Nasrallah was different than any other psychiatrist I had worked with. He carefully reviewed the history of my life accomplishments, including my three scientific publications from the Cleveland lab and from USC. He knew about my history of playing the violin at a high level. He also knew that I wanted to finish my molecular biology degree but had been told it would be impossible.

Dr. Nasrallah started me on the medication clozapine, which I had never heard of. Dr Nasrallah informed me about the potential side effects of clozapine which included weight gain, sedation, and the need to have blood drawn every week to check for white blood counts, which may drop in 1% of patients and may be potentially fatal.

After a month on clozapine, I could see real progress. I experienced a significant drop in my auditory hallucinations which I had not made on any other antipsychotic medication. After about six months, I had entered full remission from the illness. I had many long conversations with Dr. Nasrallah about my future goals and plans. He encouraged me to reenroll and complete my college education.

In 2009, a year and a half after beginning clozapine, I moved from my parents’ home in the Cincinnati suburbs into an apartment a few minutes’ walk from the University of Cincinnati. In December of 2011, I graduated with honors in molecular biology [magna cum laude] from the University of Cincinnati. It was a very emotional time for my parents who attended the ceremony with Dr. Nasrallah.

Sharing with Doctors and Families

After I graduated from college, Dr. Nasrallah encouraged me to document everything that had happened. My life story became a memoir which I published in a book titled Mind Estranged: My Journey from Schizophrenia and Homelessness to Recovery. My mom also wrote a companion book with her perspective as a mother and a nurse. Her book is titled Flight from Reason: A Mother’s Story of Schizophrenia, Recovery and Hope. Both books were published in summer of 2014.

Following the publication of Mind Estranged, I began traveling extensively to make presentations to families and mental health professionals about sustained, full recovery through faithful medication adherence and, for many persons with schizophrenia, treatment with clozapine. What I learned through these interactions was that families were often told there was no hope for recovery from schizophrenia. And I met doctors all the time who also believed recovery was impossible and never even considered using clozapine for patients with lack of improvement on other antipsychotic medications.

One of the highlights of my advocacy was meeting with a doctor who heard my story of recovery on clozapine and decided to radically change his practice—to never give up on his patients, and if appropriate, use clozapine. This doctor now serves on our CURESZ Foundation board of trustees.

I began a new career of writing and giving national presentations, initially with Dr. Nasrallah at medical conferences and later by myself. I found myself quite busy and felt I was making a difference in the lives of people with serious mental illness. Today, my mind is clear and my life has a purpose.

Establishing the CURESZ Foundation

In 2016, Dr. Nasrallah approached me with another idea, which was to establish a nonprofit foundation which we called Comprehensive Understanding via Research and Education into SchiZophrenia, with an acronym of CURESZ. The CURESZ Foundation now serves thousands of families who have a loved one suffering from serious mentally illness. CURESZ programs include our caregivers mentoring program, a support group, Ask the Doctor events, and on-campus clubs. These programs are described in Part Three of Awakenings. We are also proud of the “Survivors” we feature in Part Two who are thriving despite schizophrenia.

I have learned over the years that it is vital for psychiatric physicians to never give up on individuals struggling with schizophrenia and for persons with schizophrenia to never lose hope or give up on themselves. I will never forget my first psychiatrist telling my parents that I am permanently and totally disabled, even after knowing me for only about two days.

For those patients like me who are treatment-resistant, clozapine is the most effective antipsychotic but is an underutilized medication option. At least 1 in 3 patients with schizophrenia who fail other antipsychotics qualify for it, but in the United States, only about 1 in 25 actually are prescribed this medication. This means that there are hundreds of thousands of individuals living with schizophrenia in America who are disabled due to persistent delusions and hallucinations —in many cases, totally disabled—and they have never even heard of clozapine. There is a reasonable chance that clozapine could eliminate their psychosis and bring many of them back to their healthy baseline, as it did for me.

In 2018, the CURESZ Foundation established a Clozapine Expert Panel to help families find a clozapine prescriber whose office is near them as shown on CURESZ.org.

As I move forward with my life, I am extremely grateful for my parents who refused to give up on me, even when everyone else in my life did. I am also grateful for my former psychiatrist and coauthor of Awakenings, Dr. Henry Nasrallah. He has devoted his life to helping people like me whom many clinicians have either forgotten, neglected, rejected or deemed beyond help.

Through the essays I have written in Part One of Awakenings, and through this personal story, I would like to assert that I do not believe my schizophrenia diagnosis to be a life sentence or permanent disability. Thanks to my full medication adherence with clozapine, and support from family, friends, and Dr. Nasrallah, I have recovered. Today, I live a very happy, busy, and full life.

I am confident that my future is bright. Today, I am honored and humbled to serve as President of the CURESZ Foundation where I spend several hours a day executing its operations.