Schizophrenia: Three Moms in the Trenches
Schizophrenia in the Family. How do we cope? How can we help? We each have adult sons with schizophrenia and have written acclaimed books about it. We say it like it is, to help families, practitioners and those with SMI (serious mental illness) feel less alone...and learn. Randye Kaye, Mindy Greiling, Miriam Feldman...and guests.
Schizophrenia: Three Moms in the Trenches
Those Not So Little Voices: From Adolescent Psychosis to Wellness and Empowerment (Ep. 120)
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Guests Wyatt Forte, and his mom Denise Forte
Those Not So Little Voices offers a unique narrative as it is authored over the course of three and a half years --- from the age of fourteen to almost eighteen --- by a teenager struggling to make sense of psychotic symptoms that he experienced since he was six years old.
Wyatt’s journey is an amazing story, filled with heart-wrenching moments and major setbacks, but most importantly, it's an uplifting story that shows the power of love, support and resiliency.
Link: the book on Amazon -
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Miriam and her book: https://www.miriam-feldman.com/
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Randye Kaye
Mindy Greiling
Miriam (Mimi) Feldman
Five days after I started it, like the voices, it sounded like they were walking away from me. Like they just got so quiet. And then one day they were just gone. And you know, when the voices went away, the first thought I had was, I want them back.
SPEAKER_05Wyatt Forte has written a book called Those Not So Little Voices, describing the voices that he heard from the age of six in an honest way we three moms had never heard before. We speak with Wyatt and his mom about his road from adolescent psychosis to wellness and empowerment. Welcome to our podcast, Schizophrenia: Three Moms in the Trenches. From the place where schizophrenia and real life collide. East Coast, West Coast, Middle America. With Miriam Feldman, Mindy Gryling, and Randy Kaye. We are so excited about this episode of Schizophrenia Three Moms in the Trenches. Before I introduce our guests, I want to read a short paragraph from a book by Wyatt Forte, who, spoiler alert, is one of our guests, called Those Not So Little Voices. And this comes about, I don't know, about a third or a quarter of a way into the book where after hearing voices for many years, Wyatt finally decides to tell his mom. So he says, I called her over, and my mom says I had a look on my face she will never forget. I sat her down, took a big gulp, a deep breath, and told her, Mom, I have to tell you something. As I was saying this to her, the voices were screaming at me. Don't tell her, don't you dare effing to do it. He didn't say effing, but it's a podcast, so I just cleaned it up. But I knew what I had to do, and there was no turning back at this point. What is it, buddy? She replied. I hear voices, mom. This is a conversation I, Randy Kay, have never had with my son. I don't even know if he knows he hears voices. And when and when I met our guests, Wyatt and his mom, Denise, this was the first time for me, after 20 years of dealing with schizophrenia in my son, 20 plus years, that I had, other than one memoir I read called The Day the Voices Stop, that I had a sense of what the voices might be saying because Wyatt is so open. So if you're on YouTube, you see them sitting here. Welcome, Wyatt and Denise Forte, mother and son duo. Full disclosure, I have mentioned this book in a couple of other episodes because I had the pleasure of moderating a panel for the American Psychiatric Association with you guys on it. If you are new to the podcast, I'm Randy Kay, author of Ben Behind His Voices, my son, who I call Ben, for publicity purposes, not his real name, has had schizophrenia for 22 years. 24. 25 years now, actually. So Wyatt, I'd like you to meet Mindy Gryling.
SPEAKER_03Very nice to meet you.
SPEAKER_05A couple of state senator from Minnesota, whose book is Fix What You Can. Her son is Jim. And meet Miriam Feldman. We call her Mimi. Everyone calls her Mimi, except the cover of the book. And her book is Who Came In With It. And her son Nick has schizophrenia. Guys, we are three moms. We're not doctors. We're doing what we can to turn pain to purpose with a podcast. And by the way, I just want to mention for some reason this week I got like five messages and emails out of the blue. Oh my God, I just discovered your podcast. Because we don't like advertise or anything. So it's totally word of mouth. So when you spread the word about our podcast, you honor us so much with it. At this point, if you start to listen, this is episode 120. So you know, pick and choose, unless you want to start from the beginning. Some people are doing that. But this episode is called Those Not So Little Voices: How I Found My Way From Adolescent Psychosis to Wellness and Empowerment. Wyatt and Denise, welcome to the podcast.
SPEAKER_03Thank you.
SPEAKER_05Thank you. So I I know you have a long story and it's it's told in your book, which is available on Amazon. The link is showing up on your screen in YouTube and also in the show notes. Can you tell us a bit about the years that led up to that moment when you finally told your mom about the voices?
SPEAKER_03Yes. So that moment, you know, that you were talking about from the excerpt in my book occurred in November of 2019. And I started hearing voices in May of 2011. So that was pretty much eight years of my life when I was hearing voices and no one knew about it except for myself. So probably somewhere around 2011, I remember just experiencing a lot of paranoia. And, you know, the only reason I know that the voices started in 2011 is because I have a very specific memory of the day the voices started, which was sometime in May of 2011. But even before 2011, I certainly had symptoms of schizophrenia, just not the voices. I remember, as I said before, experiencing a lot of paranoia. Um, you know, when I was younger, I would walk into a room and just think that everyone was talking about me. And at first it was a little interesting because it didn't really involve fear too much at that point. I would just think that people were talking about me, not necessarily negatively, just that everyone was talking about me.
SPEAKER_05And you were how old at this point?
SPEAKER_03Right.
SPEAKER_05That's just what I was wondering to put a frame in it here.
SPEAKER_03That was probably from ages four to six, because when they started it in May of 2011, I was sick. So yeah, I was, you know, very young. And obviously, because I was so young, I don't have, you know, too many clear memories, but I definitely remember just walking into rooms and thinking that uh, you know, people I didn't even know, strangers, uh, were talking about me. And then, you know, in the early years of hearing the voices, again, it didn't involve too much fear. They were kind of just there. Um, and you know, what they would mostly do is kind of just comment on everything that I was doing. So it was almost like everything I did was spoken into by someone. So, like, for example, um, you know, if me and my family were driving in the car, it would be, oh, look, they're all getting into the car now. And then, you know, once I got in the car, it'd be, oh, you know, now they're gonna drive here and do this. Then when I would get out of the car, it was, oh, look, now he's gonna get out of the car now and you know, walk into his grandma's house, or you know, whatever it was that I was doing. And that that scared me a little bit only because it felt like the voices were watching everything that I was doing and they knew everything that I was doing. So, you know, that uncomfort or even just like fear was very, very annoying for me. Um, but you know, since it would happen so often, I kind of just got used to it.
SPEAKER_01Um if I can, like just right now, like so. In this beginning period when he was four to six, right? Clearly, I had no clue. And if anyone would have asked me, how is your four or six-year-old son? I mean, he was so well behaved, he did good in school, like even in, you know, like pre-K in nursery. The only thing I could say with the benefit of 2020 hindsight, he was always very cerebral. Like you could always look at him and see that he was thinking. He was thinking about something. He almost, in every picture that, you know, his dad, his dad used to take hundreds of pictures of him. It always looked like he was looking someplace else. But the greatest photography pictures you could ever ask for. You know, he was kind of like looking away or looking over here, or we would go to Disney and he would like we would be waiting on lines at Disney and he would walk up to other families and just like look up at them and listen to them. And you know, but that was, you know, I just thought he was being Wyatt. Like he was just that's the kind of kid he was, you know. Like some some boys are very much into sports, very much, you know, very active. He wasn't active, everything was going on in his head. Like so from the early years, there was not one sign that, you know, if I'm being totally honest, that I could say, oh, I thought something was wrong.
SPEAKER_02Go ahead, but I ask, um, I'm a former elementary teacher, and you know, our son didn't start hearing voices till he was like probably 18 or 19 and was diagnosed when he was 21. But uh since then I've talked to a lot of teachers. I used to focus on education in the Minnesota legislature. So I had uh when I became public with our son's uh schizophrenia, I heard from a lot of teachers. And they said that even as young as like second grade, they could tell when their students were hearing voices because they'd become acclimated to the fact that some kids did. So did you have I don't know how they could tell, I didn't ask, but um, but uh one was a sixth grade teacher and she said she could nail it when people like my son who weren't hearing voices yet but did later, she could tell and often almost always was right who was going to come down with serious mental illness when they were in sixth grade. Did you have any experience with any teachers who gave you any inkling of what was going on with Wyatt?
SPEAKER_03I don't believe so.
SPEAKER_01No, no, in fact, he was diagnosed, right, when he was just starting his first year of high school. Right. So he graduated grammar school, went to a very, very small grammar school, um, like probably four miles from our house. He was the valedictorian, he was like the teacher's pet. I used to call him like Pope Wyatt. Everybody in this school loved him. And, you know, when when he was diagnosed, like his eighth-grade teacher visited him the first time he was hospitalized. And, you know, I went back to the school because his younger sister uh was two grade grade levels younger than him. So she was in the seventh grade when Wyatt was diagnosed. So when I went to parent teacher night for my daughter, you know, like I would talk to the principal and she was like, Well, he he wasn't having any of these issues when he was here, right? And I was like, like right now, like I'm in shell shock, lady. Like, I know, but he's he's telling me he's heard him since he's six. So yeah, that would constitute when he was here. But no, I can honestly say, like, none of his, I'm like his teachers, the administration, they were actually in shock and said, like, you know, well, that wasn't going on here, right? And I was like, no, it actually was. I guess he just had very good coping mechanisms.
SPEAKER_05Right. And and and what I find interesting in in reading your book, because you're so in your hindsight, so honest about what was going on in your head. And you talk about certain incidents where you weren't that good in sports, but you tried. And you know, I can say that my son was the same way. Like if he didn't do well in a sport, it was like everybody hates me, instead of just like, oh, well, I'll try another one. So there are little things that wouldn't scream schizophrenia, they just scream a little anxiety. And why it sounds like, and I know that you talk about that your voices were two distinct voices, and that psychologically the form your voices took reminded you of the way your parents used to argue. And so, you know, I do we have learned as we educate ourselves that in different countries the voices manifest differently. But the fact is that the thing that really struck me when I met you is how many times they said to you, don't tell your mother or I will kill your family.
SPEAKER_03Right. So, right. So when I first started hearing the voices, actually, I have a very clear memory of the day it started. So I was in my room and you know, I was sleeping, and I woke up and I heard people talking. And, you know, from what I know now, it was the two voices. And you know, at first I I thought that like someone was at my bedroom door. So, you know, I opened the door and like I looked down into the hallway to see if someone was there, and you know, no one was there. And then, you know, I was looking around my room trying to find who was talking to me. And then, you know, I heard the voices, and you know, they were like, What are you looking for, idiot? Like, what is he looking for? And then I don't, I had a weird realization and I thought to myself, there's no one in your room. And then, you know, I heard the voices talking, and you know, after they were like, Well, you know, what is he looking for? Um, you know, they were like, It's normal to hear voices, like, you know, don't tell your parents. And so, you know, for the longest time, I just thought that it was normal and that everybody heard voices. Um, so that's you know, I think that's why I didn't say anything when I was so young, you know, because I, as I said, I was six. So I think I was just like, you know, a little boy doing what he was told. And, you know, this is normal, don't say anything. So I kind of just thought that it was something that people didn't talk about. And, you know, that was why I kept quiet for for so long. And, you know, I didn't realize that there was something wrong with hearing voices until I was, it was 2016. So I was 11 at the point. And so, you know, I have a very clear recollection of this as well. So it was me and my mom and my sister and my grandma. And, you know, we went down into the city because my mom's sister, you know, was diagnosed with schizophrenia as well. And I remember we were coming back from her appointment from her apartment because we had we had been there earlier. And it was me, my mom, and my sister in the car. And I was in the passenger seat. And, you know, my mom was telling us that, you know, our aunt had schizophrenia and that she was hearing voices. And I remember I looked at my mom because I and like I didn't say anything out loud, but like the look I gave her was like, what do you mean? Like, what do you mean she hears voices? Like, why are you telling me this? And then, you know, after a couple of seconds, it kind of clicked in my brain that something was wrong, abnormal with hearing voices, that it wasn't normal. And that was the first time the voices told me, if you say anything about this, we'll kill your family. Don't say anything. And then I remember through for the rest of the car, I was just silent because I was thinking about it the whole time. Because basically, like what I had thought for five years, I realized wasn't true. Um, and that was, I could say, the first time that the voices really caused me like true fear. And, you know, when they told me that they were gonna kill my family if I said anything, like, you know, it wasn't even like a question in my brain. Like, I really thought that these voices had the power to kill my family if I did something.
SPEAKER_02Were the voices strangers? You know, they say people are more apt to act on voices if they are recognizable voices as compared to strangers, right? But were yours people you recognized?
SPEAKER_03So, you know, at first I didn't recognize the voice itself, but the voices, even when I first started hearing them, would fight a lot. And the, you know, they would mimic the way that my parents would fight. So even though I didn't recognize the voice itself, they just seemed so familiar because of the way they fought. And then, you know, like I said, just because I heard them for so long, like they became super familiar. And like, you know, even now, I haven't been hearing voices for, I mean, a number of years. And I still remember the way they sounded, and I don't think that I'll ever forget that. Um, so you know, like I said, when this incident happened, I'd already been hearing the voices for five years, all day, every day, they never stopped. So, you know, they were super familiar at that point already, you know, both the way they would fight, but then also just the voice itself, the voices themselves.
SPEAKER_02How did you get rid of them? And did you miss them in any way, shape, or form?
SPEAKER_03So, um, you know, like I said earlier, um, I finally told my mom about the voices in 2019. It was November of 2019.
SPEAKER_05And that was And you were just telling tell us your age at you were like freshman in high school, right?
SPEAKER_03I was 14 and a half.
SPEAKER_05Okay, yeah. Yeah.
SPEAKER_03So that's when I told my mom. And then, you know, the day after that was the first time I was hospitalized.
SPEAKER_02And from the time I was first hospitalized, excuse me, I just have to compliment your mom. That was fast work. Good for you. Yeah, thank you. Thank you.
SPEAKER_03It was, I mean, it was very fast. You know, I told my mom about it. I believe it was a Sunday night. And then the following day was Veterans Day. And so, you know, my mom brought me to her office with her. And then that night after she made, I mean, it seemed like a hundred phone calls to me. Um, because I I remember sitting in her office and she kept picking up the phone and calling people, um, which, you know, now I know was to see what she should do because she had no idea. But every time she picked up the phone, the voice was like, Oh, who do you think she's calling? I wonder who she's calling. Is she talking about you? They're plotting to kill you because you told her. So, I mean, I remember sitting in her office and like almost crying every time she picked up the phone. Um, and then, you know, that evening she brought me to the emergency room.
SPEAKER_01And just parenthetically, that was probably one of the worst days of my life, you know. Um, he was petrified of his father. Right. He thought his father was leading a society of people who were out to get him, and that, you know, this anyone could be in the society. Right. So, you know, like me and his dad were divorced for a number of years at this point already, and our relationship is friendly enough, it's still amicable enough to this day. But he was like, You can't tell dad. You cannot. So I was totally in uncharted territory by myself with nobody to like, where do I, what do I do with my 14 and a half year old son? And half of the problem that I had was that he was 14 and a half, and there are not many resources for anyone under 16. And, you know, they told me to take him to a local emergency room, which I did. And, you know, that's was like one of the last phone calls. And I mean, on my life, I don't know what I thought, but I didn't think they were going to admit him. And when I took him to the emergency room, and the doctor came over and told me that they were going to admit him, and like the look in his face, like, I don't know what I thought. Like, I consider myself not a stupid person, but like I thought maybe give me some medicine and you know, I could help him through this or work. But they were like, if you do not voluntarily admit him, I will involuntarily admit him.
SPEAKER_00You are so lucky to have gotten that response and gone to that hospital because the early intervention is everything. And I mean, I can't tell you how many times I brought my son, he ring voices into hospitals and was sent home. So that's really wonderful about that window.
SPEAKER_03Yeah, the doctor was, you know, really understanding. He was great. Um, and you know, even I mean, basically the whole time, no matter what was happening to me, I was almost always able to articulate what was happening. And, you know, I was very clear to the doctor, I was like, this is you know what's been going on. And you know, at this point, the voices had been screaming at me for about a day straight nonstop, that you know, I wasn't allowed to tell anyone that they're gonna kill me if I keep talking, they're gonna kill my mom if I keep talking. And I think at this point, I kind of just had the mindset of, well, if they're gonna do it, it's already gonna happen. So, you know, I told this doctor, and you know, he was super, you know, he like looked at me and he was like, you know, you you can tell me what's going on. Um, and then I told him, and you know, I remember he said he was like, I almost feel like I'm talking to a colleague. He was like, I don't feel like I'm talking to a patient.
SPEAKER_05Um that's because you, you know, it took you a while to get there, obviously. You were a kid, you were a kid.
SPEAKER_04Yeah.
SPEAKER_05But the fact that you knew you needed help was was huge. And and I know from our conversations that that was it, this isn't like, and then he went to the hospital and he was fine after that. Like it, you know, you've had many. If if we look at the book, there's like telling mom, then there's like the government, my next set, second hospital. Hospitalization, like you different hospitalizations. You also talked of something that I'd never heard of called Alice in Wonderland syndrome. And you had all olfactory um hallucinations of yeah, and and then the voices were telling you something about food not to eat.
SPEAKER_03Like yeah, yeah. So that stuff this is kind of what one of the more telltale signs, it was when I started um high school. So, you know, I I live in Westchester, and you know, I was admitted to like a very, very selective high school in New York City. And the commute was about an hour and a half each way. Um, and you know, I mean, as my mom said, I went to a middle school that was maybe five minutes away from my house, a car ride. So it was a really big change for me. And I just think that the amount of stress I was under made all of my symptoms so much worse. And, you know, when I first started the high school, that was when things start to got really bad. And, you know, the voices started telling me that if I ate anything, they would kill my mom. So I wasn't allowed to eat. And, you know, it was, as I said, they'd kill my mom, or it was that the food was poisoned. And, you know, I remember I used to like tell people, you know, I used to tell, I remember I told my dad one time that, you know, I think the food's poison. And he was like, Well, look, like what if I take a bite of it first and then show you that I'll be fine? And then the voices would tell me that the food was poisoned with a genetically engineered poison that could only kill.
SPEAKER_02Oh my goodness.
SPEAKER_03So it didn't matter if someone else took a bite of the food because the poison couldn't kill them. So, anyways, this probably started in September of 2019. And, you know, I really didn't eat at all. In the morning, I would just not eat because I said that I wasn't hungry. At lunch, I just wouldn't eat either because I was at school, so no one was really watching me. But then, you know, the voice, because after I stopped eating lunch for a while, I think my mom had said something to me. She was like, Why aren't you buying lunch? And this was like the end of September. And so the voices told me you have to buy lunch and then throw it out. So your mom sees that you're spending money, so she doesn't know that you're not eating. So after that, on his high school account, right? So, you know, after my mom said that to me, like I said, probably the end of September, every day I would buy lunch and then throw it out as soon as I bought it. So she'd see the, you know, that something was changing with my balance. That go ahead, finish. And then and uh, you know, for dinner, I would say that I wasn't hungry because I was studying. Um, and then you know, I had lost like a significant amount of weight by the beginning of November. And then, you know, because I got like I was getting so hungry, you know, I would tell the voices, okay, what if I just eat half? And that was like my compromise with the voices that you know, what I would eat for dinner, I could have half and only half.
SPEAKER_00So can I just have a quick question? When you would because like Randy, so many of us moms have the same thing where my son, he now, I mean, my son's almost 40, and we this has been going on for 20 years, and it's only in the last few years when he's been on chamozepine that that he's even admitted that he did hear voices, but right, he's very reluctant to discuss anything. So I'm just wondering when you say, so I told the voices, did you speak out loud when you were talking back to them?
SPEAKER_03No, no, I would only speak in my head, and then you know they they knew what I was saying, I guess, because it was me.
SPEAKER_01But uh yeah, no, I would never speak out loud to the voices, I would just think it before he told me about you know that he was hearing voices, like when he graduated eighth grade, like when it when it was getting bad, but he was still managing, like I would see him like sometimes mumbling to himself.
SPEAKER_03Yeah, but you know, I think sometimes when I say we've all had that one, right?
SPEAKER_01I would you know the mumble, yeah.
SPEAKER_03And it would kind of like come out audibly a little bit, yeah.
SPEAKER_01But and like, you know, like at his age, right? At that point he was 14. So I just thought he was like a moody teenager.
SPEAKER_00They're all crazy when they're teenagers.
SPEAKER_01I know, so very hard to do. But then you look back at it, and you're like, no, he was like fighting with himself, literally, right?
SPEAKER_02But then Denise could Denise, could I ask you a question? Uh, because Wyatt said your sister had schizophrenia. So my grandmother had schizophrenia, and still I did not apply, you know, how but her symptoms were to my son, but yet she also couldn't eat. Her voices told her she couldn't eat, like she'd prepare this wonderful meal. And the rest of us, she said, go ahead and eat, but I can't. And then Jim also couldn't eat. His voices told him he couldn't eat. And he, so you know, to me, um, getting thin has got to be for a lot of people a symptom of schizophrenia. Jim was skin and bones when he was just diagnosed. But my grandmother's uh symptoms did not translate to me having a clue either about my son. And you said you didn't have a clue either about Wyatt. So are there any commonalities, or are you like me? You didn't learn a thing when you came to your own set.
SPEAKER_01I yeah, I mean, my sister, um, when she right before her diagnosis, right before she told everybody, she got very, very thin. She was living with her husband down in the city, so I didn't see her that that often. Um, but she, you know, you could definitely tell paranoia, um, like when I would speak to her. So there were some similarities, but you know, it's it's so hard to tell because my sister was my sister was just 50. She had just turned 50, so it was very late in her life. Um, you know, I was 46, she was 50. Um, you know, so and she was going through a tough time with her marriage. So a lot of the problems that she was having at that point, I just thought it was because she was going through a divorce and she ultimately did get divorced, but you know, she did confide um to my aunt and myself later that year, December of 2016, that she hears voices and they did the same thing, told her not to eat. Um, but now, you know, she's on medicine, thank God, and she's been fine since, you know, probably the beginning of 17, 2017. So, but no, you know, I guess it didn't click in my head seeing everything, you know, with my son at that point because it was different, I guess, or maybe I didn't want to see it, you know.
SPEAKER_05Yeah, and I and in a minute I want to jump to um high school and quickly go through your setbacks and then jump to where you really did begin to get well because uh while you're entering NYU in the fall uh full full time, which is spectacular. Um but I know it wasn't easy to get there and you had some setbacks from having spoken to you. But I will say also, you know, all of us in in in our books, you will see a similar I mean the the foreword of your book is written by your eighth grade teacher, valedictorian fact, you know, and my son too was like, oh, he's so bright, he's gonna go to Yale Law School and support you. I mean, at 145 IQ, you passed the Johns Hopkins, you know, got got SAT grades like an 11th grader might, and very, very bright. But I don't how how would I, how would any of us know have known what was going on in his head when he would feel anxious? Like he might have been hearing voices then. I don't know. And it was so normal to him that that he couldn't couldn't identify it. So but I do know from from NAMI Family to Family and all the books we've all read about schizophrenia that certainly stress and cannabis can trigger things that were just laying there. So, you know, for your sister to get schizophrenia so late, and for your voices to represent the voices of the instability of your parents' marriage at that time, I think that's all normal, but it doesn't mean that stress will cause schizophrenia, but it can sometimes trigger it. So so if you could briefly get us through the setbacks in high school and what led you to Silver Hill and Closerel. Okay. Yeah, the the reader's digest version because they can't.
SPEAKER_02I have figured, I figured, I figured it had to be closerel and you're doing so well.
SPEAKER_05And also Silver Hill, but there, you know, there were some other things you tried. And of course, you know, in in Wyatt's book, you can get further details. But give us a brief version of what led you and then what happened to really turn things around for you.
SPEAKER_03Sure. So as I said, I was first hospitalized in November of 2019. Um, I was only there for three days because, you know, as soon as I was admitted into the hospital, the voices told me, you have to get out. Do anything you can to get out. Lie to them, act fine, you have to get out. So I got in, and you know, the first night they didn't, you know, give me any medication because, you know, I think they just wanted to observe me, you know, without being on any medication. So the second night they, you know, prescribed me a type of medication. And, you know, at first the voices were like, you can't take it, don't take it. And then, you know, I was speaking to whoever the psychiatrist was in the facility. And, you know, she kind of explained to me that, you know, at this point, I did have the right to refuse taking the medication, but that if I did, they would give it to me against my will. So, you know, I was kind of backed into a corner and I was really scared. Um, and so I just took it. Like I remember just taking the pill out of their hands and swallowing it like as fast as I could. Then I went back to my room and because it was already late at this point. And, you know, the voices told me, okay, do whatever you have to do to get out, or we're gonna kill your mom and you're gonna be in here. So there's nothing you can do. So the next morning I woke up and you know, I remember I called my mom because they had like the payphone. So I called her and I remember like I tried to change my voice to sound like as happy and upbeat as I could. And I was like, no, mom, like I'm really okay. Like, I think that this medicine worked. I was like, I can barely hear the voices. I think I'm okay. And I guess she just like obviously wanted to believe that. Of course. So, right, as I'm sure anyone would. So I remember she came to visit me that next day, that same day, like a couple hours later. And I was like, mom, like I'm really okay. You have to get me out of here. And she was like, Okay, okay. And I guess there was like a a letter that she could write that, you know, said that I had to be removed from this facility within what was it, 72 hours, 48 hours, something like that. So, you know, she came and I was like, mom, like please write the letter. I'm okay. So she wrote the letter, and a day later I was out. And so, you know, they were like then once I was out, you know, the voices were like good, like, okay, good. And then I was out, and then they were like, okay, you have to tell her that they're gone, like tell her that they're gone. So I was like, okay. So I told her, you know, that the voices went away. Um, and you know, they didn't. And so, you know, I kind of went back to the same high school, but it was getting very, very like almost impossible, I would say. Um, because you know, to get down to the high school, I had to take the train there, then the subway, then the subway back, and then the train home. And, you know, I remember when I would be standing on the train tracks, the voices would tell me to jump. And, you know, it wasn't like uh, oh, you know, you should jump. It was like screaming, like, do it, do it, do it, do it, do it. Like it was like relentless for as long as I was standing on the tracks. And, you know, I remember I would tell my friends, like, you know, I would like be like, oh, guys, wait, because you know, we would be in Grand Central. And so, you know, all of them be like, okay, let's go find out track. And I'd be like, no, like, can we just wait in here for a little bit? And like I would try and avoid the tracks for as long as I possibly could because it was like unbearable to stand there. And so that was kind of when I started telling my mom, like, mom, like, I really want to transfer, like, I think I should transfer. But I couldn't tell her that I wanted to transfer because the voices were telling me to jump, because at that point she thought the voices were gone.
SPEAKER_01So I was in like a very it was a very, very frustrating two and a half years. It was like playing the hokey pokey, yeah, with him. Voices are gone, voices are back, voices are gone, voices are back. And you know, like I was almost like at and and he went through a series of different medicines, right? Which, you know, and he's very convincing. Like when he when he would tell me, like, I would want to believe he's okay, but then you would see him, I would see him struggling, and I would know like he's not okay. This is this is not okay. Like all of these medicines are not working because you know, he he's only holding it together for so long until it happens again.
SPEAKER_03And so I think that the the event that made me tell my mom, like, look, I have to leave this school, was I was on the train and you know, I was sitting down, and all of a sudden, I was like towards the back of the train car. And all of a sudden, I see from the front of the train car this woman like running towards me. And you know, she was she looked like a really like old lady who like seemed to be homeless. Like, you know, she had like ripped clothes, like really long hair. She just looked like very dirty, and like she was carrying a knife. And like I remember she ran up to me, and you know, she was like, they're gonna get you. And then she ran away. And you know, that was that was the first time that I ever hallucinated something visually, like it had always just been voices in my head. So, and you know, at that point the voices had been going on for so long, so they were just like normal to me at that point, but now like visually seeing something like that really freaked me out. Um, so that was when I told my mom, I was like, mom, like I gotta go. Um, and then you know, we called my psychiatrist after that. And, you know, he was like, Okay, yeah, like because I did, you know, confide in her about that. Um, and he was like, Okay, you know, the medicine that I was on at that point, he was like, you know, let's up it to, I believe I was on 10. He was like, let's go up to 20 milligrams.
SPEAKER_01Um, but that wasn't the clozapine.
SPEAKER_03No, no, no, that was one of the first ones.
SPEAKER_05Yeah, yeah. Cause as we've we've spoken about on this podcast a lot, they try everything before they'll try that, and we're trying to change that.
SPEAKER_03I mean, I think I went through probably seven or eight different antipsychotics before I was on clozapine.
SPEAKER_02Um I bet when you were talking to the American Psychiatric Association, hopefully there were groans in the room.
SPEAKER_05I hope those psychiatrists knew enough that I don't think this was about medication so much. Our panel was about to move. Who was the audience? Was it psychiatrists or families or it was psychiatrists?
SPEAKER_02It was the American association. Okay, well then they should know about meds and they should be groaning because they should know that their very own guidelines says after two medication failures, go to clozepine. And there's even um uh some people are now saying after one failure, go to clozepine. So I hope those psychiatrists realized um that they have a ways to go when they heard your story.
SPEAKER_05In in general, but you know, um and we all tell our stories for different reasons. This panel was more to talk about uh caregiver support. We had a caregiver, we had Denise and Wyatt and me and the social worker on the panel talking about um a continuum of care more than particular medications. And if you're listening to the podcast for the first time, all of our all of our sons, and now Wyatt as well, have had success with clozepine. Their best success, my son is currently not on it. Uh that's his choice, which I don't agree with, but nothing I can do about it. But we we are not saying that is the only medication.
SPEAKER_04Right.
SPEAKER_02But I will say he was not he was on it and then he had to go off uh because of erroneous diagnosis of uh neutropenia granulocytosis. So for 16 years he wasn't on it, he's back on it now, thankfully. But in between there, he actually did listen to his voices and jumped off a building. So it's I don't know, you must have huge resolve. I'm so glad you didn't do that. He's got a few four fused vertebrae, and it just um, you know, changed a lot of things about his life.
SPEAKER_05And so Oh, I had forgotten that. But, you know, again, just so you you know, for our listeners, we are not sponsored by any pharmaceutical company, we're not sponsored by anybody. We're all just sharing our stories. It just happens to be for many of the people on the podcast that clasipine happens to work best for them. But Wyatt, let's jump to when you finally found Clasipine, which I know has side effects for you. Yes. Um, but believe it or not, it's like we're 45 minutes into this already. So I, you know, I want to get to to I I think Silver Hill is is was a turning point for you, or Clasipine was a turning point for you, and then what your life is like now. And then Denise, I want to also I know you're jumping in as as you feel, but if there's anything else we're leaving out.
SPEAKER_03So yeah, and then I was hospitalized in Silver Hill to the day, a year later. Um, and you know, at this point I was still telling everyone that the voices were gone. Um, and you know, if if things would get bad, I would say, oh, the voices came back. And then as soon as I did that a couple days later, it would be oh, the voices were gone.
SPEAKER_05They were never gone at all. None of those meds did anything to the voices, not a thing.
SPEAKER_03And as I said, probably seven or eight different medications, and never once did the voices go away. If they would up the medication or change the medication, maybe like a visual hallucination would go away. So there was a period of time when you know I had this delusion that the government was involved and the government was trying to kill me, and I would hallucinate two FBI agents. And so I was on a different medication after that happened, and that went away, but the voices never went away. Um so, anyways, what kind of pushed me to, you know, go to civil hail was this one experience that I had when um, you know, I told my psychologist, uh obviously at this point I said that the voices were gone, but I told my psychologist that I was feeling kind of suicidal. She thought that it was independent of the voices, but it was really because of the voices. Um, and you know, I guess she told my mom to like, you know, in everything in the house, like take away the knives, anything sharp, and hide it. So she did that, but then I was taking a shower and I was using her shower at the time, and she didn't move the razor in the shower. And so I got in the shower and it was like the first thing that I saw. And, you know, the voices are like, you should do it, just do it. And I told myself in my head, okay, I'm gonna give it one more day. And if it's there tomorrow, then I'll do it. And so, whatever. The next day I went to school, I came back, and then I went to take a shower and I looked in the shower and the razor was gone. So I guess she had realized that, you know, she left the razor and so she hit it. And like, you know, I remember like I walked into the bathroom, I shut the door, I locked it, I closed the windows, I saw it wasn't there, and then like I just got out of the shower and like started crying. And that was when I realized that I needed to go in the hospital and like really like get this under control. And and so sorry.
SPEAKER_01You were we had reached out to Silver Hill like two or three days before that to see if they had a bed available. He was struggling so bad at this point. Um, and we were waiting for them to call us. Yeah, right. So that morning, the morning between the two days, you know, the two different showers that he took, I got in the, you know, I was getting ready for work. I got in the shower and I saw the razor, and I'm like, what an idiot. Like I'm sitting here moving knives, and this kid is showering in my my shower with a razor here. So I just, you know, got it and threw it out. And then he comes home, right? I didn't say to him, I moved the, you know, I moved the razor, I just did it. And then he gets in the shower to take a shower. While he's in the shower, I got the phone call from Silver Hill that the bed was open. So he gets out of the shower, and I told him, Silver Hill has a bed open, they can take you tomorrow. And he just started crying sobbing, and then he said to me, Did you move the razor? And I was like, Yeah, I I moved it this morning. Why it why? And he was like, No, I you know, you didn't tell me.
SPEAKER_03No, I didn't.
SPEAKER_01He just said, Oh, because I didn't see it there, and I was like, Yeah, you know, I'm sorry, I I moved it because you know of what Andrea said. Right. And so it was just very, very, very emotional, the whole the whole thing.
SPEAKER_03Yeah, and so then I went into Silver Hill and I was there for 11 days. Yeah, for 11 days, and you know, at this point, they had they didn't want to do close appeal. Yet, either, even though without exaggeration, there had probably been eight other antipsychotics that had not worked. Um, and they were like, okay, we're gonna try a first generation antipsychotic in conjunction with a second generation antipsychotic, because she said sometimes that has very favorable results. And, you know, they tried it, and I believe I said that it worked.
SPEAKER_01Yeah, it did.
SPEAKER_03Yes, I did. Because the voices, again, were like, you need to get out of here, get out of this hospital, or we're gonna kill her. So I said it worked, and then I was released. And then as I said, this was November, because it was exactly almost a year after.
SPEAKER_01And you know, I said the 2020, so it was in the middle of COVID. I could not visit him for 11 days. I used to go and stand in front of the window, me and his sister to him.
SPEAKER_03Yeah, because they couldn't come in. Um, and so I was released, and you know, I said that the voices were gone and you know they weren't. And then everything, you know, I kind of kept under control until December. And then um, you know, I had had a fight with my dad that was really bad. And I think that was what like really like pushed it over the edge. And like, you know, I remember because we have a house um in the Jersey shore, and like, you know, I remember I was sitting in bed and I just heard people running, like it sounded like they were running all over the house. Um, you know, and then we went home and then I had a visual hallucination of like this girl who, like, if you've ever seen the movie like The Ring, and she looked just like, you know, Samara from the ring. And, you know, she would follow me around. Um, and that was just like really disturbing to see visually.
SPEAKER_05This is well, you know, I mean, honestly, this I don't know if my son will ever be as honest about, you know, as you are. It it gives me it it makes me cry for my son, you know, what he's probably keeping secret from himself and from me. Um I we're we have about just five minutes left. So I want to make sure I we so relate to the to the hospitalization again and again, the different meds. When you finally were prescribed closeral, right? Could you feel a difference and what is your life like now?
SPEAKER_03Yes. So, you know, I was prescribed the closerol maybe two weeks after that, you know, incident that I just described because you know, my psychiatrist was like, you know, he's been suffering for too long. So, you know, they prescribed it. And, you know, he he did advise that it would make me really, really tired. Um, but at the at that point, I accepted that I wanted help and I didn't care. Um, so I started the closerl. And I mean, five days after I started it, like the voices, it sounded like they were walking away from me, like they just got so quiet. And then one day they were just gone. And I'm I'm not even exaggerating, maybe six or seven days after I started it. Um, and you know, when the voices went away, the first thought I had was I want them back. Um, because at that point I'd been hearing them, I mean, every day for 10 years, right? 10, 11 years probably. You know, and not a day in my life did I not hear them for 11 years. So it was weird and I wanted them back. But, you know, I had already been seeing my psychologist for a really long time at that point. So we had a great relationship. And, you know, she helped me work through that. And, you know, I've gotten to a point now where I don't know, it's something that I'll never forget. Um, and you know, sometimes like if I'm hard on myself or I fail at something or don't do good at something, I'll think about what the voices would have said and I'll almost hear it in my head. Um, you know, if I if I don't do something right or whatever, it's it's almost like I can hear them again, but I don't. Um and yeah, I I just really feel like a completely different person. Like it felt like I was like set-free because the voices would like control everything about my life. And it just finally felt like I was in control of everything about my life.
SPEAKER_02Wow. Besides besides medication, could you for you know, most of us haven't been to Silver Hill, what did they do there besides meds that you think helped you the most?
SPEAKER_03Yeah. So, you know, they did a lot of group therapies, which I think really helped. And like it when I say therapies, it wasn't really like therapy. It was like, you know, they would do like art therapy or like music therapy, or you know, they would like let us watch TV. So I think the therapies they had were just to like get our mind off of what was happening. So, like, you know, keeping us busy, because like, you know, instead of just like sitting in the hospital thinking about what's happening to you and you know, thinking about what are they gonna do? Are they gonna, you know, change my medicine? Are they gonna like, you know, send in a new therapist to talk to me? So I think just like getting our minds off of it a little bit.
SPEAKER_00Did you interact with other patients at that point? Did you talk and did did other people talk about the voices?
SPEAKER_03Um, well, I met this other girl who, you know, she was there and she wasn't hearing voice that she said to me, she wasn't hearing voices yet. But, you know, she like I remember we came up from lunch and um, you know, she we were all sitting on the couch and like she looked at, you know, everyone else and she was like, Why were you guys talking about me? And you know, everybody else was like, What are you talking about? But like, I mean, you should have seen the look on my face because, you know, I I knew. And then I remember she had seen the psychiatrist and like she came up to me because like I was like comforting her. I was like, no, like, you know, and I didn't tell her, I was like, no, we're not. I was like, like, why do you think that? You know, like just like letting her talk. Um, and you know, she came up to me the next day and she was like, you know, they're they're talking about paranoid schizophrenia. And you know, all I told her was like, I was just like, listen to them, you know, and I I'd like not in a do what you're told sort of listen to, just like hear them out. I remember like maybe a year later, like I saw her, like I found her on Instagram, and like her profile picture was like a picture of her smiling. And like I remember I said to my mom, I was I was like, that's the first time I've ever seen her smile. And like it made me so happy.
SPEAKER_05Wow. So Wyatt, you you shared with me that you sleep. Your way of coping with the side effects of Clauzreel is just knowing that you need sleep. And how many hours of sleep do you need a night?
SPEAKER_03I mean, anywhere from like 13 to 15. Um, no matter even if I don't do anything that day, 13 to 15.
SPEAKER_02And that's the same as my son. So you're smart to know you need it and to get it and not feel guilty about it, I hope.
SPEAKER_03Yeah.
SPEAKER_05Yeah. So when when you go to to college in the fall, you're arranging your classes around your need for your health.
SPEAKER_03Right. Exactly. So, you know, Monday, Wednesday, Friday, my classes start at 2 30, and Tuesday, Thursday, my classes start at 6 30. So, you know, it, you know, I spoke to like the disability services, and you know, some schools are less um understanding, some schools are more understanding. Um, thankfully, NYU was super understanding. So it was it was pretty easy.
SPEAKER_05That's amazing. So I'm gonna ask each of you. Let me go to you, Denise. So uh I think all four moms here have a lot in common. And what is there anything you would like other moms to or dads, your loved ones, you're also a sibling, you know, is there anything you would like people to know about your experience, things you wish you had known, things you wish you had done differently, or things that are helping you cope now? I know that's a broad question.
SPEAKER_01Yeah, yeah. I mean, I guess just to like pick one aspect of it is you know, when you're in the thick of things, like you really just need to compartmentalize like what needs to be done first, because it is so easy to get overwhelmed. And you know, that's that's exactly what happened to me because I really didn't have any background, even with my sister, it still really didn't prepare me to try to help my son, right? And you just have to compartmentalize things, take things one day at a time, and you know, try to get the help, try to get the support. Um, with the school and the accommodations, there's you know, there's always that tension between do you ask, you know, you do you use it, you don't want to use it as a crutch, but you need every single accommodation because everyone's needs are unique, right? And and there's a certain, there's a certain amount of support that someone, you know, who is diagnosed with schizophrenia needs. And they need that, you know, no matter, you know, how minute it is or how extensive the accommodation is. They need that to sustain and to be viable. So, you know, and just for anyone who has a loved one that's under the age 16, you know, you have to be your own best advocate because there's not a lot of resources for children under 16. Um, the early intervention is is key. So you really have to be, you know, cognizant of things like listen to your adolescents, listen to your preteens when they talk, because you know, you don't want to be, you know, overbearing, but you know, just look for signs because nine times out of ten, if something is gonna happen, they're there before you just don't see them, you just overlook them.
SPEAKER_05Awesome. Thank you. And Wyatt.
SPEAKER_03Yeah, I think my biggest piece of advice is if you get a diagnosis like schizophrenia, really at any age, but especially if you're young like I was, um, it's not the end of the world. It's not a death sentence. Um, because that is certainly what I thought. Um, you know, when I was 14 and a half, um, you know, alone in a room with four doctors who told me that I had schizophrenia. I mean, I thought that my life was over, that I would never be able to go to college or like get a good job. And, you know, I proved that wrong myself. And, you know, really anyone can do that. So don't let like the fear consume you and you know, limit you because it shouldn't.
SPEAKER_05I love that. I love that too. Mimi, any last you've been nodding your head the whole time.
SPEAKER_00So you're you're muted, Mimi. You're muted. There we go. It's just been reverberating in my head a couple of things. One thing is when Nick was little, everybody used to call him the judge because he was quiet and so thoughtful and not rambunctious and risk-taking like little boys usually are. And he just, you know, he would sit and he would just take in and look. And I wonder, I wonder about the voices, you know, the the last time or the time that that just haunted me so much is when he was about 15. And this was before we even knew mental health was an issue. And I was, I he was upset because he'd broken up with a girlfriend, and I went in to talk to him, and we talked about it, and I gave him advice. And then as I was, we were sort of finishing up the conversation, and I was leaving the room, he said to me, Mom, I I just I just have these voices in my head. And you know, I again had no reference to mental illness, schizophrenia, anything. And I sat him down and I told him, Look, we all have weird thoughts, we all think of odd things. It, I mean, the perfect answer for a kid who wasn't developing. I said, you know, what matters is what you do, not what you think. Don't beat yourself up about weird thoughts. And you're, you know, I gave him this great pet talk about it and walked away. And I think back to that, I was like, oh my god, it was like a voice from the other side warning me, and I didn't know enough to take it seriously. Here's a boy developing a thought disorder, and I told him, Don't worry about your thoughts, they don't count, and walked out of the room. Because I'm like you, Mindy, uh Randy. When I live, I mean, I'm on the verge of tears just listening to this. It's so painful and so recognizable to me. And we we don't have at the time the knowledge to address these things. Like that was my chance to address it when he was 15. He didn't get diagnosed till he was 20.
SPEAKER_05Right. And and there's so much shame, there's so much shame and stigma, not only from the outside world, but as Wyatt has shared with us today, your own voice is giving you stigma, right? So, you know. I'm really gonna recommend that if you want kind of a really raw, honest inside look at what it feels like to hear voices. The book is called Just Look Those Not So Little Voices. You can get it on Amazon, search for it, or the link is in our show notes. Wyatt and Denise, thank you so much for joining us today. Thank you. It was a pleasure being used. Thank you so much for tuning into this episode of Schizophrenia Three Moms in the Trenches. You can help out the podcast and help others by sharing the podcast and by subscribing wherever you get your podcasts andor on YouTube. And remember you can reach us at mindygryling.com, randy k dot com, or miriam hyfenfeldman.com.
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