What does recovery from schizophrenia look like? How about graduating from college and running a nonprofit organization?
That’s what recovery looks like for Bethany Yeiser. After being treated with clozapine, she was able to complete her university education, write a book, and form a nonprofit organization to promote awareness of schizophrenia and its effective treatments.
Here is a transcript of our conversation.
Erik Messamore: Okay. So Bethany, thanks very much for joining us.
Bethany Yeiser: You’re welcome, Dr. Messamore. Happy to be here.
Erik Messamore: Yeah. Well, like I said, I got to know you because you wrote in Schizophrenia Bulletin about your experience with schizophrenia and you’ve been an advocate for getting information, accurate information about around this illness.
Bethany Yeiser: Brain disease.
Erik Messamore: Yeah, this brain disease. Actually, it’s a neurological disease. In fact, I tell people I’m a neurologist, really, because I specialize in the frontal cortex, and the amygdala, and the limbic system, and so forth.
Bethany Yeiser: Yeah.
Erik Messamore: You and I talked originally and you and I had a similar experience, where our initial knowledge of antipsychotic drugs was that they were called major tranquilizers, right?
Bethany Yeiser: Mm-hmm (affirmative). Drugs that knock you out, so you’re sleeping. Today, I take a medication, clozapine, which has enabled me to work, to volunteer, to enjoy meaningful relationships, not to just knock me out.
Erik Messamore: Yeah, so do you feel that you’re majorly tranquilized?
Bethany Yeiser: I don’t, on clozapine. The first medications I tried, though, my first medication was risperidone, and I was sleeping 16, 18 hours a night. It really took away my life.
Erik Messamore: Well, that’s interesting, because a lot of people in my field imagine that clozapine is the worst medicine, that it has this tremendous sedating effect, but it sounds like risperidone, for you, was far more sedating than clozapine has been?
Bethany Yeiser: Yes.
Erik Messamore: Interesting. You had spent, I think, if I remember correctly, about four years as a homeless person. Tell us about how that went.
Bethany Yeiser: So briefly, I had a very happy and normal childhood. I was very serious about violin. University of Southern California was my dream school. I went there in 1999, to study molecular biology. For three years, I had a bit of a cognitive decline. I was less able to concentrate, less focused on my studies.
Bethany Yeiser: Schizophrenia hit, I’d say it hit like a thief, my fourth year of college, robbing me of my cognitive ability. My heart is like ice, you know, as the disorder develops. I wanted nothing to do with my parents, nothing to do with friends or family. About three months later, I moved out of my dormitory and became homeless.
Bethany Yeiser: I was hiding in university libraries. I remember the university police would come check the library, in the middle of the night, and they would say, “Bethany, you know, what are you doing here? This is for students.” I would show them my ID, which I had had for years, as a student in good standing. I slipped through the cracks and was sleeping in their library every night.
Bethany Yeiser: I slept in an empty dormitory in the summer, was never caught. Eventually, I was sleeping in a public bathroom. I noticed hardly anyone used it from 8:00 PM to 4:00 AM. I would sleep there. My last year, I started spending every night outside, in a churchyard, which was across the street from a dormitory, where I’d once an honor student. That’s when the hallucinations began.
Bethany Yeiser: My first hallucination was January 28, 2006. I started hearing a chorus of voices inside of my mind. I should have been diagnosed in 2006, shortly after. I was hearing voices all the time. But again, I slipped through the cracks and I spent 13 months sleeping in the churchyard every night, before finally, I was picked up by police.
Bethany Yeiser: You know, I remember when they picked me up, and said I was being taken to be evaluated, I thought, “Oh well, that’s great. I’m not mentally ill. nothing’s wrong with me.” You know, no insight at all. I also didn’t understand what mental illness was. I didn’t know schizophrenia is treatable, as we said, a treatable, neurological brain disease.
Bethany Yeiser: I didn’t know that, like cancer, arthritis and diabetes, that anybody could develop this. You know, I thought it was a flawed personality, or a sign of weakness, or multiple personalities. I realize today that schizophrenia is one of the most misunderstood diseases on Earth, you know? It was embarrassing and humiliating to be told that I had schizophrenia, but it shouldn’t have been. It shouldn’t have been any more embarrassing than having cancer.
Erik Messamore: Yeah. Well, actually, I think, I’ve done the math, it turns out there are more people with schizophrenia. In fact, in any given year, more people receive a diagnosis of schizophrenia, than will be diagnosed with type 1 diabetes, or multiple sclerosis, or lupus, combined. So it’s, as I call it, the most common illness that nobody talks about.
Bethany Yeiser: It’s also about the same in numbers as breast cancer, we’re looking at about 3 million people. You think of how so many people are advocating for breast cancer, and websites, and information. But with schizophrenia, it’s so stigmatized, and there isn’t as much information available or encouragement available.
Erik Messamore: Yeah. And, of course, we choose the worst possible names for our medicines, major tranquilizers, for example.
Bethany Yeiser: Yeah.
Erik Messamore: I mean, I was a graduate student in pharmacology, and I was reading that in my textbooks. When I first saw my first person with schizophrenia, as a medical student, and that person was on, at the time, it was Prolixin, I believe.
Bethany Yeiser: Typical.
Erik Messamore: I noticed, I was completely wrong. [inaudible 00:05:36] that I used. So, we had, you know, that’s the medicines we had. There was no hint of sedation to him. In just one day, he went from me never being able to attend anything he said, to a conversation where he taught me about his entire life in a very organized way.
Erik Messamore: He just said, “Yeah really, I just need my medicine.” And it was as simple as that. My whole perspective on psychiatry was extraordinarily wrong. As a third-year medical student, with a PhD, I realized, I knew nothing about schizophrenia, and ostensibly, I’ve been very well educated in the process.
Bethany Yeiser: Well, I was homeless for four years. One of my friends, from my undergraduate studies, went to medical school, roughly the same period of time. We got in touch years later, and she’d become, I think she became a cardiologist. I said, “You know, I have schizophrenia?” And over the phone, she said, “Bethany, I know you, you don’t have schizophrenia.”
Bethany Yeiser: I mean, this is coming from a doctor. So, you know, I do a lot of speaking for medical students. I always encourage the medical students to know something about psychiatry, no matter what field you choose. So that you won’t be ignorant, and you won’t be telling people that they can’t have schizophrenia.
Erik Messamore: Yeah. We left off, in your story, that you were sleeping in churchyards, and the police had picked you up, and were going to take you for an evaluation. Then, what happened after that?
Bethany Yeiser: Well, one thing that happened was that my parents were called, and they came to LA, from Ohio, within 24 hours. I hadn’t spoken with them for about 4 1/2 years. They were wonderful. They always said, “This is not your fault. This is a disease. You will get better. You will return to the university. We will do everything in our power to make that happen.”
Bethany Yeiser: But Risperdal, left me totally disabled and it really felt like the end. I always thought schizophrenia was a life sentence, it seemed like I would never get my life back. But finally, we started trying other medications. I switched to Invega, which was a little better, but the voices were still there. Delusions were wiped out, almost immediately, even on Risperdal, my first medication.
Bethany Yeiser: We switched to Abilify with Geodon. About that time, my doctor dropped me as a patient, because my case was complicated. I wish he had kept me as a patient, until I had found a new doctor.
Erik Messamore: Wow. So your doctor, essentially, discharged you from care, because you had exceeded the capacity of his or her knowledge?
Bethany Yeiser: Yeah.
Erik Messamore: Or something [crosstalk 00:08:11]
Bethany Yeiser: To be honest, I always told my doctors that I was not hearing voices. I couldn’t accept it. Finally, I admitted to the doctor that, “Well, actually, you know, maybe I am hearing voices.” He just didn’t want anything to do with that. So …
Erik Messamore: Right.
Bethany Yeiser: But it’s just, yeah, it’s too bad.
Erik Messamore: Then, your doctor, discharged you from his care and then what happened?
Bethany Yeiser: Well, our safety net was the emergency room. Over the next few months, I was in the emergency room four or five times. They’d adjust my Geodon, a little bit, or give me a little bit more Abilify. Minor, minor changes. Then, I, probably the fifth time I went to the emergency room, they looked at my records and said, “Obviously, something’s wrong here. She needs to be admitted.”
Bethany Yeiser: Long story short, I got a new doctor, who completely gave up on me. He said I would never go back to college. He said I should be in a day program. But I couldn’t even be in a day program, because I was sleeping so much. But another doctor, named Henry Nasrallah, agreed to consult with this new doctor.
Erik Messamore: Before you met Dr. Nasrallah, you had one doctor who said that, “You have symptoms, which are too complicated for me, so I’m going to discharge you.” And your second doctor said, “You are a disabled person, and you should go to a day treatment program.”
Bethany Yeiser: Yeah.
Erik Messamore: Okay. Then, Dr. Nasrallah became a consultant on the case?
Bethany Yeiser: Yes. He said, “You have to try clozapine.” It sounds a little bit scary to try any new drug. With clozapine, a lot of severe side effects. Heart problems, seizures, weight gain, is very common, of course, sedation. So, you know, I didn’t really want to try it. But my parents and my doctor, Dr. Nasrallah, basically said, “You must do this. You must try this. You know, your life is at stake here. You can’t just at home permanently and totally disabled and not try.”
Bethany Yeiser: So, I’m one of those people who had the, if you will, miraculous response to clozapine. At least, it certainly felt like a miracle. I had heard voices for two years, all the time. One year, un-medicated. One year, on all the different medications that I tried. And the voices were getting quieter, it was amazing.
Bethany Yeiser: After about six months, I was doing remarkably better. I was going out into the community and making friends. I was playing the violin at a higher level again. At about a year, my doctor and my parents really pushed me to try school again. That was really scary, because the last time I had been in university, I’d failed all my classes, so it was hard to go back to school.
Bethany Yeiser: But I took one class in genetics, and I got an A. I realized that I was going to finish my bachelor’s degree, finally. So, I went back to my field molecular biology and I graduated, in 2011.
Erik Messamore: With honors, I heard?
Bethany Yeiser: Yeah. I graduated with honors.
Erik Messamore: In your Schizophrenia Bulletin article, you wrote something along the lines of, prior to clozapine, you could read, but not study. And after clozapine, you were able to study. Can you tell what you meant by that or more what that felt like?
Bethany Yeiser: A lot of it was just retaining information. I could browse over the pages of a novel and enjoy it, but you might ask me what the novel was about and I could hardly give you any details. It’s like it went into one ear and out the other. I just wasn’t retaining information.
Bethany Yeiser: But, with clozapine, I was being able to remember what I read, even if it was complicated material. Even if it was a molecular biology paper, I could read it and I could remember it, so that that made a huge difference in my life. Being able to process information normally again.
Erik Messamore: Yeah, clearly. And so here you are, we have … Bethany needs to leave at 12:30, which is about six minutes from now, eight minutes. I’m wondering if there is anybody else that has a question or two for Bethany? Perhaps we could address those.