Latest / Brain Stories / Episode 16 - Brain Stories Connections: Rachel Star Withers' Wisdom on Hallucinations & Schizophrenia
Transcript
- 0:00SPEAKER_00: Have you ever seen a conversation with someone who was actively hallucinating?
- 0:04SPEAKER_00: And not because of something they took.
- 0:07SPEAKER_00: Well, you're about to.
- 0:09SPEAKER_00: Get ready for Rachel Star Withers and her incredible openness about hallucinating, growing up with schizophrenia, and why she wrote a book about it.
- 0:17SPEAKER_00: For kids.
- 0:18SPEAKER_00: I've read a lot of children's books and never seen one like hers.
- 0:22SPEAKER_00: It's surprisingly moving.
- 0:24SPEAKER_00: And it turns out that Rachel is a hallucination whisperer.
- 0:28SPEAKER_00: You know, like a horse whisperer, except for hallucinations, if that's a thing.
- 0:33SPEAKER_00: She taught herself to control the wildest bucking broncos of her mind.
- 0:38SPEAKER_00: In addition to writing, Rachel is an international speaker, a media producer, and also the host of a podcast called Inside Schizophrenia.
- 0:47SPEAKER_00: It's a show full of brilliant insight and common sense.
- 0:50SPEAKER_00: You can find a link to that and a link to Rachel's webpage in our show notes.
- 0:55SPEAKER_00: For now, buckle yourself in for a conversation that will blow up more misconceptions per minute than any talk I've ever heard.
- 1:03SPEAKER_00: And keep your ears out for the similarity of actual hallucinations to AI hallucinations.
- 1:09SPEAKER_00: This is Brain Stories Connections Uncommon Conversation about how we can all do so much better around mental health and serious mental illness.
- 1:17SPEAKER_00: I'm your host, Frank Hosa.
- 1:20SPEAKER_00: If you like this, leave us a comment.
- 1:22SPEAKER_00: Now here's my conversation with Rachel.
- 1:26SPEAKER_00: Welcome to Brain Stories, Rachel.
- 1:28SPEAKER_01: Thank you very much for having me.
- 1:31SPEAKER_00: I want to start right in, and um I want to talk about some extraordinary thing that you've done, which is you've written a children's book about childhood psychosis and hallucinations, which is a very unusual thing.
- 1:46SPEAKER_00: Where and how did this whole idea get hatched?
- 1:50SPEAKER_01: Quite a few years ago, uh my mom suggested, you know, Rachel, you have all these experiences with schizophrenia, with mental health, um, and wanting to help people, you should write a book.
- 1:59SPEAKER_01: And I was kind of being snotty at the time in my response because um I did get some brain damage from ECT.
- 2:06SPEAKER_01: And at the time I was having a lot of trouble um reading and writing.
- 2:09SPEAKER_01: And I was kind of like, yeah, it'd be good if I I could read and write better.
- 2:12SPEAKER_01: And she immediately snapped back, well, why don't you do a children's book?
- 2:16SPEAKER_01: And I was kind of like, oh, you're right.
- 2:18SPEAKER_01: I I should.
- 2:19SPEAKER_01: And that's where I got the idea for it, um, which really her just uh putting it out there that, like, hey, no excuses.
- 2:26SPEAKER_01: No excuses what your problem is.
- 2:28SPEAKER_01: Find a way.
- 2:29SPEAKER_01: Um and then I kind of had the idea of I wanted to make something for when I was little, when I was having problems, when I was scared, when I was alone, and I really didn't know how to tell people I was seeing and hearing monsters.
- 2:44SPEAKER_01: How do you deal with that in a kid's sense?
- 2:47SPEAKER_01: Um, that's kind of what grew from there was it's uh Rachel, myself, talking to Lil Star, and that's me as a kid, kind of, and I help her figure out how to deal with her monsters.
- 3:01SPEAKER_00: One quick question for our just to clarify for our audience, you said ECT.
- 3:04SPEAKER_00: What is ECT?
- 3:05SPEAKER_01: ECT is electroconvulsive therapy.
- 3:08SPEAKER_01: I had that in my early 20s.
- 3:10SPEAKER_00: And that can do a little bit of uh that makes memory difficult and that causes some issues with that.
- 3:16SPEAKER_00: Yes, effective.
- 3:17SPEAKER_01: It's primarily used for um depression.
- 3:20SPEAKER_01: And I have schizophrenia, and then I also have dystymia, deep depression.
- 3:24SPEAKER_01: So it wasn't to help schizophrenia, it was to help the depression.
- 3:27SPEAKER_01: And it did when it took out that deep depression, that made my hallucinations so much easier to manage.
- 3:34SPEAKER_01: So that's why I had electroconvulsive therapy.
- 3:36SPEAKER_01: If anyone's wondering, because it's not a normal schizophrenia thing.
- 3:40SPEAKER_00: Yeah, interesting.
- 3:42SPEAKER_00: When did when did the hallucination start for you?
- 3:46SPEAKER_01: I've had them as long as I can remember.
- 3:49SPEAKER_01: I honestly grew up thinking that was normal.
- 3:51SPEAKER_01: You you hear stories like, you know, monster under your bed, monster in your closet.
- 3:55SPEAKER_01: I just assume we all saw the monsters.
- 3:57SPEAKER_01: Like, I mean, that's I just assume so because why else did you have this like trope throughout society?
- 4:02SPEAKER_01: You know, so I just assumed really this is yeah, what everybody's talking about.
- 4:08SPEAKER_00: What is your do you have a first recollection of one?
- 4:12SPEAKER_01: The first I remember is seeing um the faces in the trees.
- 4:16SPEAKER_01: I would um these real kind of scary, frightening, demonic even um faces would be in the trees moving around, talking.
- 4:25SPEAKER_01: And I couldn't understand what they were saying, but they were like kind of talking, and it would just mesmerize me.
- 4:29SPEAKER_01: I would just kind of watch these faces.
- 4:31SPEAKER_01: Um that's as far as I could tell, like that, that's the earliest I remember, yeah, a specific hallucination that stood out.
- 4:40SPEAKER_01: Now, my parents they said that I had uh some imaginary friends when I was younger, like three, four, five, that they think that was beyond what a normal imaginary friend should be.
- 4:52SPEAKER_01: But looking back now, they thought the imaginary friend was like a normal occurrence, and I think mine were taken to the next level.
- 4:59SPEAKER_01: So that that's as early as three, four, five.
- 5:03SPEAKER_00: Next level imaginary friends, yes.
- 5:06SPEAKER_00: I can see that.
- 5:07SPEAKER_00: And in terms of what you were communicating about them, um, did you I mean, did you ever say anything?
- 5:14SPEAKER_00: Do you tell your parents or siblings or friends?
- 5:18SPEAKER_01: So I've grown up in uh the deep south, and I grew up very uh religious, and honestly, I again I thought it was normal.
- 5:27SPEAKER_01: I you go to church three times a week, Sunday morning, Sunday night, and Wednesday night, and you hear about, you know, demons and angels and Satan.
- 5:35SPEAKER_01: And I thought that, again, it was normal to see because people are talking about it all the time.
- 5:40SPEAKER_01: So as I got a little older, I was like, oh, okay, I'm seeing demons.
- 5:43SPEAKER_01: Um, all right, that makes sense because that's what everyone says it is, obviously in church.
- 5:48SPEAKER_01: Uh and it wasn't until I was 17 years old that I said something like out loud to one of my friends, and they were like, What are you talking about?
- 5:56SPEAKER_01: And I was like, Oh, dude.
- 5:58SPEAKER_01: And that was like right that moment I shut up because I I was in high school and I wasn't stupid.
- 6:02SPEAKER_01: I was not gonna get ostracized for this.
- 6:05SPEAKER_01: Uh, so yeah, I immediately shut up and I was like, oh yeah, nothing.
- 6:08SPEAKER_01: Uh, but it seriously did not occur to me that other people don't experience this till I had like just turned 17.
- 6:15SPEAKER_00: Wow.
- 6:16SPEAKER_00: And so you shut up at that point and you realize, okay, I'm not gonna do this.
- 6:21SPEAKER_00: Um when you first experienced them, you talked about it scary.
- 6:24SPEAKER_00: Were they were they terri was it terrifying?
- 6:26SPEAKER_01: So everyone always asks me, like, what do I what do I see?
- 6:28SPEAKER_01: Because it's real funny, because I love horror movies, and my mom thinks that's crazy.
- 6:32SPEAKER_01: Like, why would you like horror?
- 6:33SPEAKER_01: Like, isn't it gonna make your hallucinations worse?
- 6:35SPEAKER_01: And I'm like, I've never seen anything in a horror movie remotely close to my hallucinations.
- 6:40SPEAKER_01: Like it doesn't bother me at all.
- 6:42SPEAKER_01: Um, and the closest I could say is the there's a claymation stop motion movie called Coraline.
- 6:50SPEAKER_01: And when Coraline goes into like the alternate world and it like starts falling apart and the mom becomes like a spider or something.
- 6:57SPEAKER_01: That's the closest I can see say that a movie has ever been to my hallucinations.
- 7:03SPEAKER_01: Uh, the other is when AI started, and you know, AI would mess up with like the multiple fingers and like the multiple eyes, and like something would look off, and you're like, what is going on with this humanoid creature the computers made?
- 7:15SPEAKER_01: That beginning AI could make some twisted stuff that looked exactly like my hallucinations.
- 7:20SPEAKER_01: Just the multiple appendages, the face not being, you know, it's something's wrong with it, something's off.
- 7:27SPEAKER_01: And you're like trying to figure out why this picture lod?
- 7:30SPEAKER_01: There's something going on here.
- 7:31SPEAKER_01: And that's kind of what it's like for me.
- 7:32SPEAKER_01: I look at people, and a lot of times their facial features don't make sense.
- 7:36SPEAKER_01: Um, they'll be moving around, they'll have like their eyes dropping down as they talk, and I'm just kind of like watching it drop down.
- 7:44SPEAKER_01: Um, and at the same time being like, it's not real.
- 7:46SPEAKER_01: It's not real.
- 7:47SPEAKER_01: It's not real.
- 7:47SPEAKER_01: Pay attention to what they're saying.
- 7:49SPEAKER_00: Wow.
- 7:50SPEAKER_00: Even then you would you would know not real?
- 7:52SPEAKER_00: I mean, even as a as a young kid?
- 7:54SPEAKER_01: As a kid, I just thought, okay, that's Satan messing with me.
- 7:58SPEAKER_01: That's what we're talking about all the time on at church.
- 8:01SPEAKER_01: This is what we're all dealing with.
- 8:02SPEAKER_01: This is the spiritual struggle.
- 8:04SPEAKER_00: So it's not something at any point, did you go to a spiritual leader and say, um, so I'm seeing these things that look like demons to me, and I want to talk about them or are you did that ever happen?
- 8:15SPEAKER_01: So that's the crazy part, is like when I look back, I brought it up so many times, but I never brought it up as, hey, I need to tell you about this.
- 8:22SPEAKER_01: I think I just mentioned it in conversation, like I did with my friend, and people just kind of glossed over it.
- 8:28SPEAKER_01: Like, oh, you know, because I I really it did not occur to me it was odd.
- 8:34SPEAKER_01: I mean, I was scared of them, I was frightened, but you're supposed to be scared of demons.
- 8:37SPEAKER_01: Why wouldn't you be?
- 8:38SPEAKER_01: Um they're monsters.
- 8:40SPEAKER_01: Uh so really it I brought it up a lot, but it was just kind of glossed over.
- 8:45SPEAKER_01: Uh but I never sat down with anyone and said, hey, I need to talk to you about the stuff that I'm seeing, the stuff that I'm experiencing.
- 8:51SPEAKER_01: Because yeah.
- 8:54SPEAKER_00: And the other things that we that are sometimes called symptoms in when we medicalize this, were were they showing up?
- 9:01SPEAKER_00: Were you experiencing other issues as well?
- 9:04SPEAKER_01: So with schizophrenia, um I think that a lot of the symptoms differ when you're younger than as you get older.
- 9:11SPEAKER_01: Um, and then of course, being a kid is weird.
- 9:14SPEAKER_01: Like kids are just little weirdos.
- 9:15SPEAKER_01: So I it's hard to look back and say, what was the symptom and what was me just being um a kid in the south living in the country?
- 9:24SPEAKER_01: Uh and again, I was my parents' first child, so then you don't really know what is normal for children with your first one.
- 9:32SPEAKER_01: What is interesting, I always think that is that I I made straight A's.
- 9:36SPEAKER_01: I did really well in school.
- 9:38SPEAKER_01: And people tend to think that if you have a mental disorder, the grades is going to be the first thing that you notice slipping.
- 9:44SPEAKER_01: And that really never happened with me.
- 9:46SPEAKER_01: But behind the scenes, mentally, I was going through a lot.
- 9:50SPEAKER_01: I'd say with that also extreme depression, I was very, very suicidal.
- 9:54SPEAKER_01: And it wasn't like I was like making a plan.
- 9:56SPEAKER_01: It was more just like I was just constantly thinking about it and um hurting myself.
- 10:04SPEAKER_01: Yeah.
- 10:05SPEAKER_01: And it was just, I thought, again, I really thought that was everybody.
- 10:08SPEAKER_01: I thought everybody just walks around wanting to kill themselves.
- 10:12SPEAKER_01: Like just this like call of the void situation.
- 10:15SPEAKER_01: Um, I again did it really bring it up because I thought we all went through that.
- 10:21SPEAKER_00: Yeah.
- 10:21SPEAKER_00: Wow.
- 10:22SPEAKER_00: That sounds incredibly difficult to grow up like feeling that all so frequently.
- 10:27SPEAKER_00: What when do you first recall feeling that?
- 10:29SPEAKER_01: I don't know if it was like the hallucinations told me to hurt myself or it was just something I did to help me deal with the hallucinations, but I remember hitting my head into things.
- 10:39SPEAKER_01: Like it's like I I would kind of I don't want to say lose control, but my head would get overwhelming and I would sometimes like just try and make it all stop.
- 10:50SPEAKER_01: And I might hit myself, hurt myself.
- 10:52SPEAKER_01: Um, and I would just fantasize about suicide pretty much.
- 10:57SPEAKER_01: Um, even as a kid, and I didn't even fully understand what that meant, what it was I was fantasizing about.
- 11:02SPEAKER_01: Um, because uh it wasn't like something horrible happened.
- 11:06SPEAKER_01: It was just this always present feeling, this always present urge to hurt myself.
- 11:12SPEAKER_00: And that desire to hurt yourself was to stop feeling the the the credible discomfort?
- 11:18SPEAKER_01: I think so.
- 11:19SPEAKER_01: Kind of to give in to the the pressure of it.
- 11:23SPEAKER_00: When you would feel depressed, would that be for a long period of time?
- 11:26SPEAKER_00: Would be how how give me a sense of how it came and went.
- 11:30SPEAKER_01: It doesn't go.
- 11:32SPEAKER_01: It's always been a steady with me.
- 11:35SPEAKER_01: I've had a few little sparks where it lifted for like a day or something, and I'm always like, basically, it's like I'm on drugs that day.
- 11:41SPEAKER_01: It's like we um but for the most part, it's just always been there like a big wet blanket you're just carrying around with you.
- 11:49SPEAKER_01: A lot of people with schizophrenia, when it hits the first psychotic episode, it's such like a huge adjustment that is very noticeable for people around the person going through it.
- 12:00SPEAKER_01: Um I think mine just happened so young that yeah.
- 12:04SPEAKER_01: And I did have a very big psychotic episode shortly, yeah, into my late teens, but I there was no major one as a kid that like set off reg flags or yeah.
- 12:16SPEAKER_00: Yeah, yeah.
- 12:18SPEAKER_01: It was more just like a steady.
- 12:20SPEAKER_00: As a little kid, before you even hit the teen years, you basically were having a lot of hallucinations, feeling feeling this general depression, but it was all normal to you.
- 12:30SPEAKER_00: You didn't know anything else, and you were hearing enough about the world around you that it sounded like everyone else is probably going to be.
- 12:36SPEAKER_01: Oh yeah, I thought I was normal, yeah.
- 12:39SPEAKER_01: I was like, we're good.
- 12:41SPEAKER_00: And was there any time, any particular hallucination where you felt or any time when you saw something where you felt that it was a particularly like r memorable experience or really was maybe traumatizing or maybe even good, but I'm guessing most of the time they didn't feel good.
- 12:58SPEAKER_01: No, no.
- 12:58SPEAKER_01: There were I had a lot of traumatizing ones.
- 13:01SPEAKER_01: One of mine that I've had since I was a kid and I still struggle with today is um looking in mirrors.
- 13:06SPEAKER_01: Uh things change when I look into like a mirror, my reflection doesn't make sense, it moves around.
- 13:12SPEAKER_01: Um, and that would freak me out so much as a kid, especially when you're thinking, um, you know, you're learning to put on makeup and stuff and look in the mirror.
- 13:19SPEAKER_01: And I I was just sometimes fascinated.
- 13:22SPEAKER_01: I would watch the hallucinations move around in the mirror and just stare at it.
- 13:26SPEAKER_01: Um, because I it's like I didn't understand what I was seeing and it was scary, but you can't look away.
- 13:31SPEAKER_01: Um, and I remember I I would literally have these, like I would be afraid to get up at night and go to the bathroom because I had to pass by, you know, the bathroom mirror.
- 13:40SPEAKER_01: So I would like kind of like awkwardly like slide my hand in to turn on the light and then kind of like shuffle without like trying to accidentally see this big mirror that was right there.
- 13:50SPEAKER_01: Um yeah.
- 13:53SPEAKER_00: Wow, that sounds like quite an ordeal to not go to the bathroom.
- 13:56SPEAKER_00: Yeah.
- 13:58SPEAKER_00: Jeez.
- 13:58SPEAKER_00: Wow.
- 13:59SPEAKER_00: Oh my gosh.
- 14:00SPEAKER_00: Well, so you you had this idea to write up the write up a book and a children's book.
- 14:06SPEAKER_00: It was literally your adult self, as you say, as you set up in the book, talking to uh your child self.
- 14:12SPEAKER_00: Little star is the name that you give the character.
- 14:15SPEAKER_00: Um and you do this thing where you give some tools to Little Star that are really I'm gonna editorialize here, I think lovely.
- 14:23SPEAKER_00: Um you have you you tell Little Star to give the monster a name.
- 14:28SPEAKER_00: First of all, you call it a monster.
- 14:29SPEAKER_00: Is that do you feel like that's an accurate thing or is that something you've tried to do yourself or you you ever did yourself, I mean?
- 14:36SPEAKER_01: Yeah, yeah.
- 14:36SPEAKER_01: I just I kind of think that's the best way to describe them was yeah, monsters.
- 14:40SPEAKER_01: You know, the these whether they're humanoid creatures, dark, shadowy type figures, just monster in general.
- 14:46SPEAKER_01: It's something that and I I love it because like, you know, now we have like the movie Monsters Inc.
- 14:51SPEAKER_01: and stuff.
- 14:51SPEAKER_01: So monster always isn't a scary thing.
- 14:54SPEAKER_01: And that's my goal um with the book and how I treat every hallucination I have is turning this in from a scary monster to a nice monster.
- 15:03SPEAKER_01: The monster's still there, but how we view it switched.
- 15:07SPEAKER_00: How did you learn to view a monster differently?
- 15:10SPEAKER_00: Let me let's start there before you even got to talk about the book.
- 15:13SPEAKER_01: Well, I I kind of just learned it at some point that it was in my 20s.
- 15:19SPEAKER_01: Um I didn't do that as a kid because again, I thought it was normal and I just thought, all right, let's be terrified.
- 15:25SPEAKER_01: And I had a really bad hallucination in my 20s.
- 15:30SPEAKER_01: Um, and it was me without my face.
- 15:32SPEAKER_01: My face had been cut off, and she haunted me basically for months.
- 15:37SPEAKER_01: Um, and it was so bad that I started making the cuts one night to yeah, make her real.
- 15:44SPEAKER_01: And one night I had like almost had enough of it, but I was so frightened and so scared, and I hadn't slept in days, and I was just like, you know what?
- 15:52SPEAKER_01: I'm gonna confront her.
- 15:52SPEAKER_01: I'm gonna confront her because this is this is insane.
- 15:55SPEAKER_01: I'm I'm gonna die if I don't.
- 15:57SPEAKER_01: And when I went to confront the hallucination, I realized it was me.
- 16:03SPEAKER_01: And it was like me at my absolute worst.
- 16:06SPEAKER_01: And I I stopped fearing her.
- 16:09SPEAKER_01: I I suddenly suddenly felt bad for her.
- 16:11SPEAKER_01: And right away the fear, the fear went away.
- 16:13SPEAKER_01: It was the craziest thing.
- 16:14SPEAKER_01: It was just like, you know, a snap.
- 16:16SPEAKER_01: And I I suddenly felt like empathy for this hallucination that had been, you know, haunting me all of these months.
- 16:23SPEAKER_01: I thought, okay, she's not scaring me.
- 16:25SPEAKER_01: This isn't a scary thing.
- 16:26SPEAKER_01: This is me at my worst.
- 16:28SPEAKER_01: And I was like I wanted to take care of her then.
- 16:30SPEAKER_01: And I still have that hallucination quite a bit.
- 16:32SPEAKER_01: Um, she'll creep up now and then, doesn't scare me, doesn't bother me.
- 16:35SPEAKER_01: It's just kind of like, oh hey.
- 16:38SPEAKER_00: That is staggering.
- 16:40SPEAKER_00: That is just so extraordinary.
- 16:42SPEAKER_00: You you came to that realization entirely by yourself.
- 16:45SPEAKER_01: Oh, yeah, yeah.
- 16:46SPEAKER_01: It was, I'd say it was out of desperation too.
- 16:48SPEAKER_01: It was it was been a it would I think it was probably uh I'd been seeing her for over six months.
- 16:54SPEAKER_01: So we're talking a pretty long um in and out of a psychotic episode.
- 16:59SPEAKER_01: Yeah.
- 17:01unknown: Wow.
- 17:02SPEAKER_00: And so how did you so um I just want to back up for one second then and just say like so in the book, you you the way that you handle the monsters is you give them you you tell Little Star, give them a name, give them a funny hat.
- 17:16SPEAKER_00: Yes.
- 17:18SPEAKER_00: Give them a hobby.
- 17:19SPEAKER_00: Yes.
- 17:20SPEAKER_00: And uh and find out what they're scared of.
- 17:26SPEAKER_00: And and talk to that.
- 17:28SPEAKER_00: These, I mean, the very first time I read that book, I went like, holy cow, these this is such a simple, beautiful, powerful thing.
- 17:36SPEAKER_00: And how did how in the world did you come up with that?
- 17:38SPEAKER_01: It's just pretty much the that.
- 17:40SPEAKER_01: Just how do I make a simple way of changing how you see?
- 17:44SPEAKER_01: And the first step is to draw it, to get it outside of your head.
- 17:47SPEAKER_01: Even if you are a horrible artist, and kids like to draw anyway, so it's fine, but the adult version too, you draw it.
- 17:53SPEAKER_01: And it's just to get it out of your head, even if it doesn't look at all because you're a bad artist, you're just trying to get it out of your head.
- 18:00SPEAKER_01: Um, and then naming it.
- 18:03SPEAKER_01: And one of the big rules is it can't name itself.
- 18:05SPEAKER_01: So if this is a hallucination like that goes by a name, calls itself Satan, whatever, no, you name it and name it something either like cute, like cuddles or something, or silly or like boring, like George.
- 18:19SPEAKER_01: Um not like Satan of the sixth, sixth dimension of hell, or you know.
- 18:23SPEAKER_01: Um, so have it, give it a name.
- 18:25SPEAKER_01: And the whole goal is that you're taking um ownership over it.
- 18:29SPEAKER_01: Uh with the kids' version, I say, yeah, put a funny hat on it.
- 18:32SPEAKER_01: What what's a hobby?
- 18:34SPEAKER_01: And you know, I always think what what's a you know, if you have this monster right here, like what does he do?
- 18:38SPEAKER_01: Let's say he likes to skateboard, let's say he likes to knit, he plays the flute, you know, find some kind of hobby.
- 18:45SPEAKER_01: And that that right there, it's like when you think about like, wait, what does this monster do when he's not with me?
- 18:50SPEAKER_01: He he goes to the skate park, you know, or he's struggling in music class.
- 18:55SPEAKER_00: Right.
- 18:56SPEAKER_00: It's so humanizing of the monster.
- 18:57SPEAKER_00: I mean it turns the monster into somebody who be you would you can, as you said, you know, a few minutes ago, somebody you can actually empathize with.
- 19:04SPEAKER_01: Yeah.
- 19:05SPEAKER_01: And like kind of makes it humorous.
- 19:07SPEAKER_01: You're taking away the fear, um, especially if you're imagining this monster struggling at the skate park.
- 19:13SPEAKER_01: Um the next thing is what is something the monster would be afraid of?
- 19:18SPEAKER_01: And it can be just like, oh, it's scared of going to the dentist.
- 19:21SPEAKER_01: It's scared of being laughed at.
- 19:24SPEAKER_01: One of them I have in the book as an example is he's scared of being alone.
- 19:28SPEAKER_01: He can't make friends very well, so he's just too shy to make friends.
- 19:32SPEAKER_01: So you would give him some sort of problem and then you give him advice.
- 19:36SPEAKER_01: How can he get over this problem?
- 19:39SPEAKER_01: And that is the person who's experiencing the hallucination, kid, adult, whatever, that's how you take control.
- 19:46SPEAKER_01: Because now you're helping the monster.
- 19:49SPEAKER_01: Whatever it is, say, hey, you know, you're you got some serious cavities, my man.
- 19:54SPEAKER_01: You gotta start brushing every day, you gotta start flossing.
- 19:57SPEAKER_01: You know, let's say that he's shy.
- 19:59SPEAKER_01: Well, that was kind of based off the uh hallucination I had without my face was okay, she's scared and shy.
- 20:06SPEAKER_01: That's why she's in the shadows, that's why she's frightened to come out.
- 20:09SPEAKER_01: Uh, she thinks she's ugly, you know.
- 20:11SPEAKER_01: So let's start.
- 20:12SPEAKER_01: I'll be your first friend.
- 20:14SPEAKER_01: And yeah, that's you just kind of taking the monster out of his zone and putting him into yours and be like, all right, you're gonna come along with me now, but we play by my rules.
- 20:25SPEAKER_00: That seems completely brilliant to me.
- 20:27SPEAKER_00: And this was something you basically came up with on your own?
- 20:29SPEAKER_00: Was it a result of any kind of work that you had been doing, any sort of therapy you've been doing?
- 20:35SPEAKER_01: No.
- 20:36SPEAKER_01: I I and this is just a public service announcement.
- 20:40SPEAKER_01: I wish there was more cognitive behavioral therapy done with people um who uh have psychotic episodes.
- 20:46SPEAKER_01: There really isn't.
- 20:47SPEAKER_01: It's pretty much just um put us on antipsychotics.
- 20:50SPEAKER_01: It would have helped me so much whether kid, adult, someone would have been like, oh, hey, here's an easy, simple, like little trick you can try.
- 20:57SPEAKER_01: It might not work for you, but let's try it.
- 20:59SPEAKER_01: And no one ever did that.
- 21:02SPEAKER_00: Still to this day.
- 21:03SPEAKER_00: Yes.
- 21:03SPEAKER_01: Yeah.
- 21:04SPEAKER_01: To this day.
- 21:05unknown: Wow.
- 21:06SPEAKER_00: So have you done cognitive behavioral therapy, CBT?
- 21:09SPEAKER_01: Oh, yeah.
- 21:09SPEAKER_01: Yeah.
- 21:09SPEAKER_01: And it's all just what I had to find on my own, what I had to reach out and find.
- 21:14SPEAKER_01: It's never been um suggested to me.
- 21:17SPEAKER_01: I had to go out of my way to like, okay, let me find a therapist who does this.
- 21:21SPEAKER_01: Um, and a lot of them have turned me down.
- 21:24SPEAKER_01: Uh, they don't feel comfortable working with someone with schizophrenia.
- 21:26SPEAKER_01: It's kind of like, oh, well, that's a little too too much, um, which makes me feel worse even more.
- 21:32SPEAKER_01: You're like, oh wow, wait, I'm too crazy for a therapist.
- 21:36SPEAKER_00: Yeah.
- 21:36SPEAKER_00: Uh nothing, nothing like being stigmatized by somebody who's in the business as opposed to healing.
- 21:41SPEAKER_00: Yeah.
- 21:42SPEAKER_01: The best therapists I've had over the years, and it I just realized this just a few years ago, um, they they were all social workers.
- 21:50SPEAKER_01: There were ones who couldn't get rid of me.
- 21:52SPEAKER_01: It was like you went all the way down to the bottom, and they were just ones I had found that I was like, oh, that's why these ones helped me so much.
- 21:59SPEAKER_01: They didn't have a choice.
- 22:01SPEAKER_01: Um, and they've been wonderful.
- 22:02SPEAKER_01: I have nothing but a great thing to say about, especially psychiatric nurse practitioners, um, therapists who are working in with the government and like those systems, the social workers, they go through so, so much.
- 22:15SPEAKER_01: Um, and they're really the ones who come in contact with people with schizophrenia a lot more than even.
- 22:21SPEAKER_01: I mean, I've had some psychiatrists that are like, oh, wow, you're only the second person with schizophrenia I've ever met.
- 22:26SPEAKER_01: I'm like, oh, that's reassuring.
- 22:29SPEAKER_01: Or they're they've only met people with schizophrenia in crisis.
- 22:33SPEAKER_01: You know, they did hospital rotations.
- 22:34SPEAKER_01: So the only times they've met with them were people who were institutionalized, um, who were in crisis and like forced into a two-week stay.
- 22:43SPEAKER_01: So it's almost like they don't know what to do with me, you know, because I'm not having a crisis.
- 22:48SPEAKER_01: I don't need it's just keeping me even kill.
- 22:52SPEAKER_01: And it and they just don't know what to do with me a lot of times.
- 22:55SPEAKER_00: Aaron Powell Right, exactly.
- 22:56SPEAKER_00: To to the generalizing from somebody when they're at their very worst is, of course, one of the big mistakes that we all make in every field or many fields.
- 23:03SPEAKER_00: Oh, yeah.
- 23:04SPEAKER_00: Um and I mean you you basically came up with the techniques yourself.
- 23:08SPEAKER_00: So you're you're sort of your own best healer, is what it sounds like to me.
- 23:12SPEAKER_01: Aaron Powell There's so many people with schizophrenia and other serious mental disorders that we've adjusted, we've come up with coping mechanisms on our own.
- 23:20SPEAKER_01: Um, and I wish we we could get together and share more of those.
- 23:24SPEAKER_01: Because I've always found like with someone who experiences what I experience, when they're like, oh, hey, this is something I use, this is something I do.
- 23:31SPEAKER_01: Let's say I turn on the fans to help drown out the voices talking.
- 23:35SPEAKER_01: I do such and such.
- 23:36SPEAKER_01: Their advice always helps me so much more than the advice I've been given by um professionals.
- 23:43SPEAKER_01: Because this is someone who's lived it and like tried it and like, no, hey, listen, do this is what I did.
- 23:48SPEAKER_01: You should try this.
- 23:49SPEAKER_01: Um and I wish we we could have more of that.
- 23:53SPEAKER_01: I wish we had more people um with serious mental disorders able to share, hey, these are the different mechanisms I've come up with to make it day to day, to survive day to day.
- 24:03SPEAKER_00: Yeah, that makes a hundred percent sense.
- 24:05SPEAKER_00: And so, and now I want to ask you so you're somebody with obviously a lifetime of lived experience.
- 24:10SPEAKER_00: Do you feel like it's valued?
- 24:12SPEAKER_01: I don't think it is in like a medical community setting.
- 24:15SPEAKER_01: Um, I've had a lot of psychiatrists talk down to me, be very rude.
- 24:20SPEAKER_01: Uh I to give you an example.
- 24:22SPEAKER_01: I once gave like a presentation, and this this psychiatrist was giving me a compliment.
- 24:27SPEAKER_01: Um, but he came up to me afterwards and goes, Wow, that's so amazing.
- 24:31SPEAKER_01: You talk so well.
- 24:32SPEAKER_01: All the the people with schizophrenia eye treat are retards.
- 24:36SPEAKER_01: I was like, Oh, yeah, like wow, you just okay.
- 24:39SPEAKER_01: Um and he said it so confidently, and I'm thinking, I feel really bad for everyone that you treat.
- 24:45SPEAKER_01: Um Yeah.
- 24:47SPEAKER_01: Uh it's just like they look down on people who have a mental disorder.
- 24:52SPEAKER_01: I understand you went to school for many, many years, but you can't discount the people who are actively living in the trenches with it, you know, who are experiencing it every day, who are going through all of these horrible side effects from medication, um, dealing with the symptoms.
- 25:06SPEAKER_01: And I think a lot of doctors just kind of gloss over all that.
- 25:09SPEAKER_01: It's like just take this pill, you'll be fine in three months.
- 25:11SPEAKER_01: Maybe.
- 25:12SPEAKER_01: Maybe.
- 25:13SPEAKER_01: We hope so.
- 25:14SPEAKER_01: We'll see.
- 25:14SPEAKER_00: Yeah.
- 25:15SPEAKER_01: Either way, we'll see in three months.
- 25:17SPEAKER_00: Right.
- 25:18SPEAKER_00: And I think when what you what what you were saying earlier about people when you're talking to other people and they say, like, oh, I turn on the fan and go, oh, great idea.
- 25:25SPEAKER_00: There are hundreds of ideas like that that I think people who live with schizophrenia know and can share and talk about that, as you as you said, rarely get aired, rarely have a platform to air.
- 25:37SPEAKER_00: We don't see it as treatment, we don't value it.
- 25:39SPEAKER_00: And the that's a massive, huge loss of knowledge, of talent, of things that could help so many people do better that we don't tap into it all.
- 25:49SPEAKER_01: Aaron Powell I say I hallucinate around 90% of the time.
- 25:52SPEAKER_01: Um that's not necessarily giant monsters dancing around.
- 25:55SPEAKER_01: That's just like even little things, like I said, I I have to avoid mirrors even to disday.
- 25:58SPEAKER_01: Because when I look in the mirror, my face starts kind of morphing.
- 26:02SPEAKER_00: 90% of the time?
- 26:03SPEAKER_01: I that that's like my kind of estimate.
- 26:05SPEAKER_01: It's always happening.
- 26:07SPEAKER_01: If like if I look in a mirror, like even now I'm talking to you and like the I have two computer screens, and one of them, uh, my reflection is in the side of it, real dark.
- 26:16SPEAKER_01: Uh, so I'm like, it's kind of irritating me.
- 26:18SPEAKER_01: Uh just because she moves when I don't move, and vice versa.
- 26:22SPEAKER_00: Yeah.
- 26:23SPEAKER_00: Yeah.
- 26:24SPEAKER_01: But so yeah, it's little things.
- 26:25SPEAKER_01: It's not necessarily like, oh my God.
- 26:27SPEAKER_01: Yeah.
- 26:28SPEAKER_00: But it's really helpful to hear that because uh thank you for sharing that because I just feel like, okay, it gives me some health understanding of how much there is for you to navigate and that you're working with and working around.
- 26:39SPEAKER_01: And I am on medication, just so we're clear, I am on antipsychotics, and that still happens.
- 26:45SPEAKER_01: Yeah, they're much more manageable.
- 26:48SPEAKER_01: Um, but I don't think so many psychiatrists don't realize that hallucinations are are very hard to get rid of, even with medication.
- 26:58SPEAKER_01: Um it's almost like residual effects are still there, you're still dealing with.
- 27:03SPEAKER_00: Yeah, yeah.
- 27:04SPEAKER_00: I want to talk about actually the beautiful ending to the first part of your book.
- 27:08SPEAKER_00: Um, what you say to Little Star, if you would just let, you know, instead of me saying, and a spoiler alert for those who are going to get this book, who you even knowing the ending doesn't matter, you should get the book anyway, I think.
- 27:21SPEAKER_00: It'll plug, but Rachel tells Little Star, gives Little Star some advice at the very end about what it's like to live with hallucinations.
- 27:31SPEAKER_00: What is that advice?
- 27:32SPEAKER_00: How do you end that?
- 27:34SPEAKER_01: So little little star is like, I mean, I have her voice too.
- 27:37SPEAKER_01: Sorry, Rachel, I'm no longer scared of Chester.
- 27:40SPEAKER_01: That's her monster that we named.
- 27:41SPEAKER_01: Uh why do I have to see monsters when other kids don't?
- 27:46SPEAKER_01: And I say, you know what?
- 27:47SPEAKER_01: I don't know, little star.
- 27:49SPEAKER_01: All we can do is learn to live an amazing life and then find other people like us.
- 27:55SPEAKER_01: And that's something that's important in my book is that once the different kids are able to find a coping mechanism for what they're going through, they're then able to recognize it in other children.
- 28:07SPEAKER_01: And that's when they become the superhero, is when they help another kid who is having that problem.
- 28:13SPEAKER_01: Um, because yeah, I uh that's so much of like when you have this disorder, when you have any kind of thing, you you can recognize other people going through the same thing you are.
- 28:22SPEAKER_01: You know, it doesn't have to be a mental illness, it can be other things, and you like you're able to connect, and that connection is what can really help bring people back from the edge.
- 28:32SPEAKER_01: And I think it's something even little kids can do.
- 28:35SPEAKER_00: That is staggeringly beautiful and um and is my eyes are welling up because I just think it's so it is so lovely and so clear about how an older person can help someone who's really young doing it, and then a young person can become empowered.
- 28:55SPEAKER_00: And the idea of them of of a kid going on to become a superhero is a such a beautiful thing.
- 29:01SPEAKER_00: And spoiler alert again, in the second part of the book, that's exactly what Little Lil Star becomes.
- 29:08SPEAKER_00: And it was something that I was really blown away the first time I read the book.
- 29:12SPEAKER_00: We're like, wow, that's a just a brilliant idea.
- 29:15SPEAKER_00: Like, yeah, you can manage these and then help other people manage them, which makes you a superhero.
- 29:22SPEAKER_01: Yeah.
- 29:24SPEAKER_01: Yeah.
- 29:25SPEAKER_01: Connecting with other people like you.
- 29:27SPEAKER_01: And I think that's the most the big thing of it is that you're not alone.
- 29:31SPEAKER_00: So important.
- 29:32SPEAKER_00: So fundamental.
- 29:34SPEAKER_00: The book is sold a little bit.
- 29:36SPEAKER_00: Um, and one particular instance where you where it's sold to a school district, and you then went in and did some training with the counselors.
- 29:45SPEAKER_00: In your ideal world, how do you see this book being used?
- 29:50SPEAKER_01: Uh exactly like that.
- 29:51SPEAKER_01: Social workers, counselors.
- 29:53SPEAKER_01: It's something that's easy to give to someone who is struggling.
- 29:58SPEAKER_01: Um it's on it like it has little workbook sections.
- 30:01SPEAKER_01: It says, you know, this is how to um do the little activities.
- 30:06SPEAKER_01: Um, and that's kind of why I want it.
- 30:08SPEAKER_01: Something that a lot of times people don't know what to say.
- 30:10SPEAKER_01: I don't know what to say to, let's say, my niece who's having problems.
- 30:13SPEAKER_01: I don't know what to say to this kid in school who is clearly having problems.
- 30:18SPEAKER_01: Just to be able to hand them a book, that was my goal.
- 30:21SPEAKER_01: Just to be able to hand the kid, hey, I may not know what what to say.
- 30:25SPEAKER_01: This is freaking me out, but hey, maybe this book can help you.
- 30:28SPEAKER_01: What as uh an aunt can I do?
- 30:32SPEAKER_01: What as a friend can I do?
- 30:33SPEAKER_01: What as someone on the outside?
- 30:35SPEAKER_01: What as, you know, a baseball coach can I do to help?
- 30:38SPEAKER_01: And it it's hard to talk to everyday people like, okay, well, here's all the things you can do, because there aren't many.
- 30:44SPEAKER_01: Most of it is, you know, listen and um encourage them to get help.
- 30:50SPEAKER_00: Yeah.
- 30:51SPEAKER_00: And the idea of reading a book with somebody is such a such a simple but powerful way to connect.
- 30:58SPEAKER_00: Um I just want to say also that the book has three parts to it.
- 31:01SPEAKER_00: Uh one of them is about hallucinations and and what you call childhood psychosis, but hallucinations essentially.
- 31:07SPEAKER_00: Another one's about depression, and the third part is is ADHD attention deficit disorder or attention hype deficit hyperactivity disorder.
- 31:15SPEAKER_00: It's for children who are experiencing n not just hallucinations, but a variety of issues.
- 31:20SPEAKER_00: Is it something that you see going into schools?
- 31:24SPEAKER_00: I mean, I I think that, you know, many of us go on grew up going to gym class um once a day or whatever, twice a week.
- 31:33SPEAKER_00: We don't ever go to mental health class, but it seems to me like, boy, would that be useful if we went to uh mental health ed as as as often as we went to physical ed, phys ed.
- 31:44SPEAKER_00: Any any thoughts about that?
- 31:46SPEAKER_01: Oh, I mean, that would be great.
- 31:47SPEAKER_01: Of course, the last 10 years, you know, we've had such a huge push to have mental health.
- 31:53SPEAKER_01: Um, talking about mental health in like spaces, all over social media, like that's that has changed a lot, I'd say, since when we were in school, but it's not all the way there.
- 32:04SPEAKER_01: Serious mental disorders are not included in that.
- 32:07SPEAKER_01: A lot of times people say mental health, they're thinking, man, are you stressed out?
- 32:11SPEAKER_01: You're having a hard time at your job.
- 32:13SPEAKER_01: They're not thinking, oh, you have schizophrenia, you're in the corner drooling on yourself because you're hallucinating a monster.
- 32:18SPEAKER_01: It's like, okay, well, let's back that up.
- 32:20SPEAKER_01: That's not the kind of health I meant.
- 32:22SPEAKER_01: Um, but yeah, I I think more people need to know about it.
- 32:29SPEAKER_01: And this sounds silly, but the first time like I realized depression wasn't normal was it was a Zolof commercial.
- 32:38SPEAKER_01: Zoloft had just come out and there was this little bouncing cartoon ball.
- 32:43SPEAKER_01: And it was like bouncing really sad.
- 32:45SPEAKER_01: And and just the commercial, I was like, wait a minute, that's how I feel I feel like the sad little ball.
- 32:50SPEAKER_01: And I was like, wait, not everyone feels like the sad little ball.
- 32:54SPEAKER_01: Like that, like just that clicked in my head.
- 32:56SPEAKER_01: I just remember seeing on TV and be like, wait a second.
- 32:59SPEAKER_01: Um uh so and that was just a commercial pushing a medication.
- 33:04SPEAKER_01: Think if I had been able to take a class um in high school and learned about those different things, or even had like a presentation where someone gave and said, Hey, this these are signs and symptoms, and this is how you get help for these things.
- 33:17SPEAKER_01: You know, this is what's normal and what's not normal.
- 33:20SPEAKER_01: Because again, I I had no idea.
- 33:23SPEAKER_00: Your book also, as I said, it deals with uh depression, it deals with uh attention deficit disorder.
- 33:28SPEAKER_00: So it's it is a kind of thing that the number of children who live with schizophrenia is pretty small, but the number of children who feel depression and ADHDs gets to be quite a quite a bit of a larger segment.
- 33:39SPEAKER_00: And as you have said several several times, um, you know, as kids we just walk around thinking everything that we're experiencing is the way the world is, and it's only when we get older we realize, oh hey, um it takes a Zolof commercial to help us realize everyone's not sad most of the time or all the time.
- 33:55SPEAKER_00: Um and so it's incredibly helpful to get that news when you're when you're actually young in a way that's understanding.
- 34:03SPEAKER_00: We cannot have a discussion without talking about the illustrations.
- 34:06SPEAKER_00: You did them all.
- 34:07SPEAKER_00: Um how did you come up with your your style to illustrate?
- 34:11SPEAKER_01: Oh, it's just been a weird little character, uh, it's a little version of myself with like crazy curly hair that I've drawn for a few years, and I just kind of um I mean I think I got better and better at it, maybe not.
- 34:25SPEAKER_01: But it's kind of simple little drawing, and I thought they were cute little cartoon uh characteristics.
- 34:31SPEAKER_01: Um one thing is my book, I try to keep them all like gender ish neutral.
- 34:36SPEAKER_01: They all have kind of little hairstyles.
- 34:39SPEAKER_01: Um, I try and keep them race neutral so you really can't tell what exactly they are.
- 34:44SPEAKER_01: Um, and it was funny because at the time I was teaching modeling and acting when I was drawing them, and I would like hold up the uh pictures to my kids' class, and I would be like, okay, which one of these little kids do y'all like the most?
- 34:54SPEAKER_01: And I had a really diverse group.
- 34:56SPEAKER_01: So they would pick out the different like hairstyles that they thought was the best for the book.
- 35:02SPEAKER_01: And I thought I was like, okay.
- 35:03SPEAKER_01: So they yeah, I got all these little kids who just be like, that one, Mr.
- 35:06SPEAKER_01: Rachel, and that that's the hairstyle.
- 35:07SPEAKER_01: And I like that one because she looks one of them told me that she liked my curly hair drawing, which was me.
- 35:12SPEAKER_01: She's like, she looks out of control.
- 35:14SPEAKER_01: And I'm like, thank you.
- 35:16SPEAKER_01: I was like, well, okay, that's kind of what I was going for, I guess.
- 35:20SPEAKER_00: That's so funny.
- 35:21SPEAKER_00: And there's one other aspect of the book that I that I really thought was powerful too, is that it's not just a book to read, but if you want to, it can become a workbook.
- 35:32SPEAKER_00: Can you describe that a little bit and say why you've chosen to do that?
- 35:36SPEAKER_01: I've never been able to get rid of my depression.
- 35:40SPEAKER_01: It's always been here.
- 35:41SPEAKER_01: And you think about if someone has gone through something horrible, they've lost someone close to them as a kid, like basically it's just time will heal.
- 35:48SPEAKER_01: That that's really the only advice people give is just hang in there.
- 35:52SPEAKER_01: Yeah.
- 35:55SPEAKER_01: What uh the book pushes is looking around and finding ways to make the world around you better.
- 36:02SPEAKER_01: Um, so you basically have all this darkness around you, and that's how you make it lighter, is finding ways to help other people around you to kind of pull you out of that darkness.
- 36:12SPEAKER_01: So yeah, there's just lots of little coping mechanisms that to me they're they're normal because I use them every day.
- 36:18SPEAKER_01: And I was like, you know what, let me share these.
- 36:19SPEAKER_01: And I thought um the uh the hallucinations, depression, and ADHD were probably the main ones kids kids um experience.
- 36:30SPEAKER_00: Would you do us a favor and just hold up the book so we can see it and tell us the title and how we can get a hold of it if we want to get a hold of it.
- 36:38SPEAKER_01: It is The Adventures of Blank, and it's volume one has the fearless star, the unstoppable light, the ambitious focus.
- 36:47SPEAKER_01: And you can check these out on Amazon.
- 36:49SPEAKER_01: They're available um in uh physical copy and on Kindle.
- 36:54SPEAKER_01: And if you're just looking for one of the books, so I actually have um it on there where you could get just the schizophrenia, just the depression one, just the ADHD one.
- 37:04SPEAKER_01: So if you weren't, you don't feel comfortable, as say, with your child learning about the hallucination ones, you just want them to see the depression one, that's available too.
- 37:13SPEAKER_00: I imagine it being read with um with with a Rachel star to a little star that is with an adult to to a younger children.
- 37:22SPEAKER_00: Because it seems like it's something that's not it's not it wouldn't not just pick it up on your own and read it, although that could be helpful too, but to have that connection with another human being.
- 37:30SPEAKER_00: Is that something you envision?
- 37:32SPEAKER_01: I would love that.
- 37:34SPEAKER_01: Um and again, it goes back to it's easy.
- 37:38SPEAKER_01: And I've met so many people, professionals, who don't feel comfortable working with scary things, um, like schizophrenia, and this makes it easy.
- 37:48SPEAKER_01: Because honestly, we're not that scary.
- 37:51SPEAKER_00: Rachel, thank you so much for joining us today to talk about your book.
- 37:55SPEAKER_00: This is absolutely fascinating.
- 37:57SPEAKER_01: Well, thank you so much for having me.
- 37:59SPEAKER_01: And um, it's a pleasure because that the book, even though it's a little kid's book, like that's my life story.
- 38:05SPEAKER_01: That's why it's so passionate to me because I'm like, yeah, that, yeah, that's my heart.
- 38:11SPEAKER_00: That makes total sense, and there's a ton of heart in that book.
- 38:14SPEAKER_00: Thank you again.