Episode Transcript
[00:00:00] Speaker A: Foreign.
[00:00:10] Speaker B: Hello, welcome. You're listening to season two of Narcolepsy Navigators, brought to you by Naps for Life Narcolepsy. Narcolepsy Navigators is a podcast for raising awareness of this fascinating illness through a deep dive into the lives and individuals living with narcolepsy and idiopathic hypersomnia. I am Kearley Boga, the founder of Naps for Life Narcolepsy. And welcome to our stories.
[00:00:40] Speaker C: Hi, welcome. This is Narcolepsy Navigators. I'm Kelly, your host. Today we have Trey from the United States, and our topic today is advocacy. Trey, thank you. Can you tell us a little bit about yourself, how old you are, if you don't mind. What country are you residing in and what year you were diagnosed?
[00:01:00] Speaker D: Hi, everyone. My name is Trey Burge. I'm from the United States of America. I got diagnosed with narcolepsy, with cataplexy, narcolepsy type 1 at the age of 18. And I currently live in Cedar Rapids, Iowa.
[00:01:16] Speaker C: Can you share a bit about your narcolepsy journey, highlighting any challenges that you experienced along the way?
[00:01:25] Speaker A: Yeah.
[00:01:25] Speaker D: Now that I have my diagnosis, there's just conversation about remembering your symptoms before you even got diagnosed. So me being 26 now, it's crazy to look back and think, oh, man, that was narcolepsy. All these moments, these sleeping spells, cataplexy, the sleep paralysis.
[00:01:45] Speaker A: Right.
[00:01:45] Speaker D: I encountered all those things at different stages of my life. And I remember being 18, getting that diagnosis.
How much of a weight was lifted off my shoulders. But it was also very scary to navigate. Right. I'd like to say that the way I got diagnosed was a blessing. I graduate high school and I go to this vocational school called Job Corps, and I'm just freshly 18. It's a new place.
[00:02:16] Speaker A: It's hot outside.
[00:02:17] Speaker D: It's in the summer, and I'm sitting there learning about how this program works. Okay? So imagine this. For the first couple weeks of the program, each week, you're learning something different about how the program works. The first week, you're learning about how the different careers work, the different trades. You can learn how to be a cna. You can learn how to be a network cable installer. You can learn how to do medical billing coding. Certain Job Corps places that offer so many different types of programs. It's such a dope program for youth to be able to get themselves some skills and certifications in different areas. That was my journey, right? I graduated high school, I got a Job Corps. The first couple weeks of this program, it's hot outside, it's a new place, and my symptoms are acting up. I'm sitting here. The sleep paralysis is getting me. The excessive daytime sleepiness is getting me. I'm learning all these new things. My first week teacher, okay, the way this program works is they switch out teachers on a weekly basis because new.
[00:03:17] Speaker A: Students come into the program every week.
[00:03:20] Speaker D: Okay? Imagine that. Okay? New students come into this program every week. My first week teacher, she pulls me aside later that week, says, hey, my husband does the same things that you're doing. His face does that too. He has. He had narcolepsy. Have you ever heard of narcolepsy?
And I was sitting on what I've heard of it in passing. I remember a teacher in high school probably bringing it up once, but at that time, I wasn't even focused on that. So I'm sitting here, and I love shouting her out. Her name is Krista Tedro. She calls me aside, says, hey, my husband does the same thing. He has narcolepsy. I'm like, oh, cool. So you telling me the reason why I can't stay awake and learning what I'm supposed to be learning is because of a sleep disorder, Right? I think you should get that checked out. So we book an appointment with the wellness center, and about three months later, I get the mslt, the multiple Sleep latency test. It's such a crazy experience being there.
[00:04:22] Speaker A: Having all these wires hooked up.
[00:04:23] Speaker D: To me, in layman's terms, you dream rather quickly, like you are getting any type of restful sleep, and that's not gonna see him. I'm telling you like a Christian never would have. If I would have never been at that program at that moment in time, Fortunate that this woman had a husband with narcolepsy. Okay, that's. It's wild to think that now is the beginning of my journey with ankle.
[00:04:52] Speaker C: So how did your family take it when you came home and you told them what the lady said at the. The camp and stuff? Were they like, yeah, definitely, we should go get you tested and everything. And after your diagnosis, did you find that they were very supportive and came on board really quickly?
[00:05:11] Speaker D: Actually, let's say there's two truths to this, right? One, because I have to understand that they also weren't that educated on narcolepsy. I did not feel that support from my family at the time. It was 2015. I'm like, hey, I have this sleep disorder. None of them knew jack squat about this. Okay? None of them knew anything about it. So the Types of support I was wanting from them, I didn't really get. And also the way the program worked, the job Corps program worked. I was there for a while. I got diagnosed in. Okay, changed a lot. Didn't go see my family till that November. Hey, guys, I have a sleep disorder.
[00:05:50] Speaker C: So you got diagnosed while you were away.
So you didn't come back home to do at your local doctors and stuff? You did it while you were away at this place. Oh, wow.
[00:06:03] Speaker A: Correct.
[00:06:04] Speaker D: They didn't laugh at me in a sense, but they're like, yeah, boy, we know. Nick shrugged it off. And I think about it now, and yes, it didn't feel as good at the time, but I really do think it was just a lack of education. I think what I do now as an advocate, young entrepreneur and business person with narcolepsy, I tried my best to bridge that gap of how people understand narcolepsy. At the time, I just wanted sympathy and empathy from them.
[00:06:33] Speaker A: Correct.
[00:06:34] Speaker D: And they didn't know the gravity.
They didn't understand the gravity of what this could be. Which I think this is why ISO hard to dis the stigma. Right. They understand the gravity of it. So the type of support I wanted from them, I didn't get initially. I didn't get that from them.
[00:06:52] Speaker C: How long do you think it took before you could see that they were starting to understand a little bit or starting to get on board?
[00:07:00] Speaker D: I think they're just now getting on board almost 10 years later.
[00:07:06] Speaker C: It took a while.
[00:07:08] Speaker D: Yeah.
[00:07:09] Speaker C: I'm glad they have finally, because I know there's lots of people with narcolepsy who are in situations where they are not getting support from their family and the. The misunderstanding of it and the miseducation is.
[00:07:24] Speaker D: Yeah, rampant.
[00:07:27] Speaker C: You said that you moved away for work.
[00:07:31] Speaker D: So basically those are my college years. I only saw my family during holidays. Okay, let's see. 2015 all the way to 2019. I saw my family maybe once or twice a year. So there wasn't necessarily. I couldn't sit with them for long periods of time and try to get them to understand the gravity of it. That's why I'm glad I do what I do now. I make videos on the Internet saying what's going on and trying to appeal to that emotion. I was even scared to call my family members up and let them know that I fell. So up until this point, they even my brothers first took my narcolepsy as a joke too.
They just. That's what brothers do. They. They mess around with each other. And it's just now getting to the point where I see it click. The light bulb in their head goes, oh, snap. My brother is experiencing this thing that affects his life detrimentally. And I think it helps that I'm making these videos. I'm a designer, Right. I'm an educator as well, inviting my.
[00:08:36] Speaker A: Brothers out to the fashion shows.
[00:08:37] Speaker D: Cause I have a narcolepsy. Warren's clothing brand.
[00:08:39] Speaker A: A sleep disorder.
[00:08:40] Speaker D: Warren's clothing brand. And they get to see what I do and how much passion I put into raising awareness. I think it's clicking now as opposed to me just having a conversation with them. I think having multiple ways. If there's like a tool guide for advocacy. Right?
I'd say find multiple ways for your family to engage with the idea of sleep disorders. Not just you telling them, but maybe show them. Julius 5 Hour Project Sleep had a Ted Talk where she talks about her narcolepsy.
[00:09:12] Speaker A: Right.
[00:09:13] Speaker D: So just I found myself showing different types of media.
[00:09:20] Speaker E: Do you think your creativity has helped you process your own emotions around narcolepsy as well as advocate for yourselves?
[00:09:29] Speaker D: Course. That's why I think it's clicking with so many people now is because I'm able to find different avenues to express myself and basically how it relates to my own emotions too. It helps me make sense of the world that I live in. I grew up watching cartoons and different.
[00:09:44] Speaker A: TV shows, and I've always had a.
[00:09:46] Speaker D: Wild imagination before I got diagnosed. So being able to write poems and draw pictures and share stories where I can express myself helps me maneuver the world differently, right? Kind of. And now it feels like I'm telling a tale, right? A story of a brave warrior who just so happens to have this sleep disorder. That is so much easier than to say, I have this chronic illness that is super debilitating. And it's easier to tell that story and that it also helps with the kids that work at a school as well. It also helps when I talk to them about it. I say, Mr. Trey, why is Mr. Trey sleep? And I'll say, my dream box is broken. That's what. That's what I say to them. My dream box is broken. And sometimes it randomly drops dreams. And when those dreams do drop, because our body's trying to keep us safe, my body stops moving and goes to sleep.
My big thing. I created a company called Wake Up Entertainment. It's W A I Q U H V E N T N T. And what I've noticed is there is not a lot of digestible media out there for sleep Disorders. Oftentimes you look into narcolepsy, other sleep disorders, and the content of it, it's boring. That's not to judge the content that's out there. We. We need as much content out there as possible. But there's content that's not as engaging for younger audiences. Then there's also content that is harmful. It has the lack of respectful representation too. So I created Wake Up Entertainment for the sake of. Oh, man. Like the stuff that we see on tv, the stuff that people with narcolepsy are complaining about. We should create the media. We want to see those jokes that are badly written about narcolepsy. Let somebody with narcolepsy tell that joke. Right?
[00:11:49] Speaker C: Yeah.
[00:11:50] Speaker D: Let somebody with narcolepsy write that character in that book. It sounds so far fetched, but I'm so ready to get first started off, you see my shirt, it says Flippy. It started off as a clothing brand called Flippy. And now the idea of, oh, it's misspelled.
[00:12:07] Speaker A: And it's fun and kooky.
[00:12:08] Speaker D: And those people ask me like, why is it spelled wrong? And I'm like, it's not spelled wrong right. It's Slippy. And I eventually wanted Sloppy to be a character, right. Because I'm working with these kids. And I'm like, that would be cool. So that was like a Seshimi street carrot. Wouldn't that be really cool? And I was like, how do I turn that into a show? Like, how do I make that a book? And I just kept thinking about it. Oh, yeah. I want to be so much more than T shirts. I'm like, I should get a team together. I should get a team of artists and creators of Not Kalexi. And we should create our stories that we see in our heads and then that will be the representation. It's no longer the time where we say that representation wasn't there for us. We created our own.
[00:12:50] Speaker C: Yes.
Wow. I love that. And we need more of that because we don't have that out there. And that's why I think we get so frustrated about seeing the misrepresentation. I was just talking to my mom the other day and I was saying, I wish there was a way. And talking to Iris about it yesterday even, she said that she saw some Pokemon. Not Pokemon.
What's the other word for Pokemon? That type of cartoons. And they had a story about a dad and a son with narcolepsy. And she goes, it was just so disrespectful. And it really upset her. Usually she. She's not really bothered by these things. But she goes, it was just so disrespectful. She was just like, how is this allowed to be aired in the first place? This is what has been bugging me all this time. What are the loopholes? Why the media industry is allowed to continuously misrepresent narcolepsy, which they wouldn't do with other illnesses. They wouldn't think to misrepresent someone who was an amputee or someone with a heart condition or anything like that. Yeah. So I love that you're doing this and that you have a team and everyone has narcolepsy and they share their creativity. There seems to be something about narcolepsy, and the part of the brain that is affected seems to have a big connection with creativity. I found there's so many people that I've met with narcolepsy who have a massive creative side, and there's something to do with lack of sleep that seems to have triggered that part of the brain. Trey, when did you start going on TikTok or social media?
Did you get any negative things at the beginning? What was that like?
[00:14:26] Speaker A: So imagine this. It's 2021, okay. And I say, you know what? It'll be really cool to have my own clothing brand. So I create one, and I call that sleppy. That's stylized as capital S, capital L, capital E, lowercase p, uppercase P, uppercase Y, slappy. It looks like the word sleepy. Some of the pieces that I have that drive me as a character who falls asleep, eventually I get hit up by this company. They create viral videos about different topics. They're like, hey, we would love to use your video. I had a video that wasn't getting its numbers up, and it was just about me documenting my symptoms. My hair was a lot shorter at that moment in time. And I just was talking about it. I just was like, hey, this is what it looks like when I'm experiencing excessive daytime sleepiness. I was out of it, and that video got traction. I gained a lot more followers on TikTok and other platforms until the point where this company wanted to reach out to me. Okay? So they're talking to me, and I'm excited because I'm like, wow, what it means to be an influencer. I created something that people are resonating.
[00:15:34] Speaker D: With, and now I'm. I'm going to be featured.
[00:15:36] Speaker A: It was such a great thing for me. I was like, this is so cool. This is going to help so many people. So they use some of my TikToks and this compilation video just about just describing what narcolepsy is. And it wasn't just me. They used several other people's TikToks as well. After that, I started to feel down about that experience because it wasn't a conversation regarding compensations.
And I was like, wait, people get.
[00:16:04] Speaker D: Paid to do this?
[00:16:05] Speaker A: To have their videos on social media platforms? That's content. I'm making them money. They're using my TikTok and they're using other people's TikToks on social media. And then they're going to get the ad dollars from that.
[00:16:17] Speaker D: This double edged sword.
[00:16:18] Speaker A: Because now I'm like, okay, I'm raising awareness. Then I'm also like, I don't know if anybody else got compensated for that either.
[00:16:24] Speaker D: I started to bug me.
[00:16:26] Speaker A: And around the same time, Flippy, the clothing brand, started to evolve much more into what I originally started it as. I tried to understand the mission a lot more. Before, I was just really obsessed, the way it's spelled. But then I started to find likeness in the way I was spelling it, the designs I chose. It was all just to have pride and narcolepsy, okay? It was to look at that stigma and say, you know what, I got something going on. And if you see me falling asleep in public, if you see this funny shirt I got on, you probably won't judge me, right? I'm a 275 pound black man, right? If I'm asleep in public, then people are going to assume some things. And there have been several times where I felt unsafe in public and other times where I've fallen asleep.
[00:17:10] Speaker D: And I just think it'd be really.
[00:17:12] Speaker A: Cool to have something on my body outside of a medical alert bracelet that says, hey, this is fun and cheeky. I started to think, hey, Sleppy. The name Sleppy sounds cool. Around the same time, I started getting influenced by this character on the Internet called Lippy. I'm starting to see all the kids be obsessed with this dude. He's just, hey, character talking about random stuff. I could get into children's educational programming, right? What if I had a character named Slept? Then I started drawing that out. What would this dude talk about? He could talk to children about sleep disorders. He could have a whole crew of friends with sleep disorders. I decided to write a script on that. How would a typical TV show go upon talking to other people? I realized it's not as easy as.
[00:17:54] Speaker D: I thought it would be. Step back.
[00:17:57] Speaker A: I've also been creating art since I was 18. Even before that, it wasn't just always T shirt designs. So now you got me trying to think of Slappy becoming an actual character for children's educational programming. Then I realized I didn't get paid for this one opportunity. Now so many other people get paid to do that, right? I'm just a guy from Iowa, and I would love to have an opportunity like that. A lot of it is opportunity, right?
[00:18:24] Speaker E: Yeah.
[00:18:25] Speaker A: So once again, being reached out to this publication and they. They have master feature. And I was like, okay, this has got to change.
Next we talk about the representation in media in regards to narcolepsy. A lot of that discussion has been the representation sucks. Like, that's what we talk about, Whether it be something from Disney, that there's an old movie called Deuce Bigelow. Like, there's a bunch of just representations of narcolepsy and other sleep disorders that aren't respectful. I've also been making videos on the Internet since I was 18. I can educate people and create my own content. I can create the media that I.
[00:19:03] Speaker D: Want to see, while also getting a crew of people who have the same.
[00:19:07] Speaker A: Sleep disorder as me. I found some people because I bought that video DM me, and I started becoming Internet friends with them. I realized these people are a little sick. I got a dude named Corey who is creating, like, dude, he's creating this animated series. I'm so excited to see his project grow. And then I have. There's two other members part of the team, Gia and Tati. Tati's an author. Gia is an artist. I have Olivia.
I have Jojo.
Now I'm seeing all these names, and hopefully when it. When it comes out, I can tag them and let them know I name dropped them. These are individuals, the sleep disorder, narcolepsy, type one. Okay.
And they're also very creative. If I get all these people together, we could take the stuff we want to see. We can do everything everybody else can do. Just have an angle of a person with narcolepsy created this. The jokes aren't written by somebody without that sleep disorder. Now, these are people who I want to be able to uplift and say, you deserve to be compensated for your work. A lot of wake up entertainment came out of it. Just was like, my people deserve to be like, what are you talking about? There's so many things at our expense. People with sleep disorders. I had a video on the Internet of me bawling, crying. Like, the reality of having a sleep disorder like this, man, it sucks. Shifting in and out of reality, dreaming, and people not understanding you. I'm like, there's no way that we can't be properly accommodating.
If you're going to create something about the sleep disorder, you should have the sleep disorder control.
[00:20:43] Speaker E: The ones in.
[00:20:44] Speaker A: People in a writer's room should have that sleep. You're gonna be on a podcast talking about it. If you're a rapper and you name drop narcolepsy. Narcolepsy isn't just some right now. Sometimes I feel like it's taken as a joke, right?
[00:20:56] Speaker C: Yeah, definitely. They wanna drop it all the time, anywhere they wanna talk about anything. Your sleep, they think is funny.
[00:21:04] Speaker A: That's not it.
[00:21:05] Speaker C: Keep your word. Keep the word narcopsy out of your mouth.
[00:21:13] Speaker D: Not only that, but I got more.
[00:21:15] Speaker A: Like, professional credibility as well after being featured on this podcast. BBC Radio podcast. Oh, yeah, I had that with Helena Merriman, and it was about my story. So you got clout that way, too.
[00:21:29] Speaker D: Are you telling me, like, my name is becoming more of a people like.
[00:21:34] Speaker A: Oh, this is Trey Burge. This is what Trey is doing. And I'm like, all right, cool. I got something to prove. So I'm getting people together. Wake up. Entertainment functions as a collective at this moment of beautiful artists.
[00:21:45] Speaker D: We just so happen to have sleep disorders.
[00:21:47] Speaker A: And now here we are, 2024. Everybody's working on their own individual projects. We want to treat it as a marketplace where you can directly support the art of this person with this sleep disorder.
[00:21:59] Speaker D: Okay.
[00:21:59] Speaker A: If it just so happens, like, Corey is talented in UX design. I don't really know much about ux.
[00:22:08] Speaker D: I hit up Corey and I'm like, my guy.
[00:22:10] Speaker A: Do you know anything about this? I want individuals with narcolepsy to collaborate with that. I'm also writing a book. I want the book to be illustrated by an individual narcolepsy.
[00:22:22] Speaker D: You get what I'm saying?
[00:22:23] Speaker A: And be able to do it in the contracts and whatever and be able to, like, they get compensated anytime somebody buys this book.
[00:22:29] Speaker D: That's what I.
[00:22:30] Speaker A: That's a goal of mine. It's an imaginative book about a kid with narcolepsy, written by somebody with narcolepsy, animated by a person with narcolepsy. Like, it's just.
[00:22:39] Speaker D: It feels like the biggest flex for our community. I want to flex in the world.
[00:22:43] Speaker A: And be like, you see, this is creative. Like, you see what we did there? We did that. Your jokes are like, what you did was. But look what we're doing.
[00:22:51] Speaker D: And wake up.
[00:22:52] Speaker A: Entertainment is different in the nonprofits out there that are dedicated to raising awareness.
[00:22:56] Speaker D: They have a focus on support groups.
[00:22:59] Speaker A: And educating, sharing stories. I'm just trying to have fun with it.
[00:23:02] Speaker D: I want to create a community.
[00:23:03] Speaker A: Content is king, right? Being able to create meaningful art, have that be the forefront of it.
[00:23:09] Speaker D: I have a goal down the road.
[00:23:11] Speaker A: Of getting so many people with narcolepsy, another sleep disorders together in our art gallery and getting art. Imagine that.
[00:23:17] Speaker D: Full of people with sleep disorders.
[00:23:19] Speaker A: I'm a dreamer. We're all dreamers. You get what I'm saying? I want to be able to tap into that.
[00:23:23] Speaker D: The bigger picture looks so great that.
[00:23:27] Speaker A: I had to tell myself and then my business mentor had to tell me. Everybody else in my life was like, all right, Trey, you gotta slow down.
[00:23:32] Speaker D: Just a little bit.
[00:23:35] Speaker A: Break that apart into chunks, into manageable steps. And here I am.
[00:23:39] Speaker C: You're writing all your ideas down, deal with them in manageable steps, bit by bit. Keep all your ideas together, Work on them as you see fit. So, Trey, when did you start your TikTok?
[00:23:52] Speaker A: My TikTok started as musically, I was making videos on musical ly. Like lip syncing to music videos. Oh, then I had. It was in college. And I'd say, I'm at the merger.
[00:24:08] Speaker D: Happened musically, got bought out by TikTok.
[00:24:11] Speaker A: And they transformed the whole app. My account was still there. So whatever followers I had on musical ly ended up following me over to TikTok. And that wasn't a lot either. It was like maybe 14, 15 people. And then I just was making goofy stuff. I had to think about the concept of making content dedicated to sleep disorders till about.
[00:24:32] Speaker D: I ain't gonna lie.
[00:24:33] Speaker A: So the pandemic passing, and I'm still making videos. I'm sometimes making videos about being a para, sometimes making funny videos that are, I think, hilarious, but not.
[00:24:42] Speaker D: And I might attack a narcolepsy joke.
[00:24:44] Speaker A: Here and there as far as saying something, but I never was like, let me only do this.
[00:24:48] Speaker D: Let me majority do this.
[00:24:50] Speaker A: And even still to this day, my.
[00:24:51] Speaker D: TikTok is culmination of everything.
[00:24:54] Speaker A: I have no idea how to niche.
[00:24:56] Speaker D: People say, you need to niche down.
[00:24:58] Speaker A: And I don't know what that means. I want people to look at my page and be like, this is Trey virgin. He does so much stuff. It was hard for me to get on TikTok and say, hey, kids, I.
[00:25:10] Speaker D: Don'T know how to.
[00:25:11] Speaker A: That.
[00:25:11] Speaker D: That part I don't think I can tap into twice quite yet.
[00:25:15] Speaker A: Yeah, I'm sorry, I went on a tangent. You Asked me when I started it.
[00:25:20] Speaker C: When did you start doing the advocacy work connected to the TikTok 21?
[00:25:27] Speaker E: Amazing. I think it's nice you have that variety on top, because it's not like you were showing people that, yes, you have narcolepsy, but that's not the only thing about you. You've got other things going on in your life as well. And it's a hard balance to get that sometimes.
[00:25:43] Speaker A: Especially when you think about the way people say content and digital marketers and everything. Trey, you gotta niche down.
[00:25:50] Speaker D: You gotta niche down.
[00:25:52] Speaker A: I'm like my whole existence.
I'm a musician. I am a boyfriend with narcolepsy, a teacher with narcolepsy. You get what I'm saying? I'm a business person with narcolepsy. Creating the platform that I have right now, watching it grow is wonderful because.
[00:26:08] Speaker D: There are people who hit me up.
[00:26:10] Speaker A: And they value the different sections of. I'm talking about music. They might love that. I'm talking about how I feel about maybe an argument I have with my brother. They're into that. They're into me as a person, my personality. So it's not so much how we say person, first language person. With narcolepsy, I'm a person of Trey Burge, who so happens, narcolepsy. That's where I'm at now. I still want to promote my music stuff too. I still want to promote art shows. And even though it might not get the audience I think it deserves, I'm doing something right because people still message me clearly. Liz, people are in my inbox telling me how much they appreciate my content. How can they be a part of the Martin Calipso community?
I just realized I don't like to talk in front of the camera. I'm going to show you. You look a slump, and I'm just.
[00:26:54] Speaker D: Gonna be real with you. And that's what a lot of my.
[00:26:57] Speaker A: Supporters get from I don't know how to put on a face. I'd rather just be myself. And if they mess with it, they mess with it.
[00:27:05] Speaker C: I'm glad you're putting yourself out there, particularly as a man of color. What do you think about the lack of representation in narcolepsy community and how we could improve it? And you talked about people hitting you up. Do you have a lot of people of color hitting you up?
[00:27:25] Speaker D: However, you hit a nail right on the head.
[00:27:27] Speaker A: Not a lot of them are black men or people of color in general. If they are black, the men are women. About a month ago, Somebody found my content and it was a black man.
[00:27:39] Speaker D: I was just shocked.
[00:27:40] Speaker A: I went to the Wake Up Narcolepsy conference last year and met another, an older gentleman who was black. I don't know what we can do about representation. I think me existing as representation within itself. So then when I create these videos and they have my face in it, or they have me and my afro textured hair locks, that's great for the community. I want to create children's educational programming to show black and brown communities. People don't think we have sleep disorders for some reason. When you type in narcolepsy to TikTok, some of the most viral videos are the people who are white. And it seems like the Internet or the content are drawn towards people are of color. Their videos are viral. They have 54,000 people and I'm like.
[00:28:22] Speaker D: Whoa, no shade to them.
[00:28:24] Speaker A: They're doing exactly what I'm trying to do as well. When I figure out representation, opportunity is the thing, I'm really thankful I put in the work these last couple years to be finding myself in situations like this.
To answer your question, clearly me doing this and getting myself out there is the representation.
Hop on Podcast Wake Up Narcolepsy Project. Sleep yo. Trade the black dude with locks from Iowa. I'm. I am an anomaly. One thing I didn't like growing up is I didn't see myself. I want people to see other little black and brown boys. Like, oh my gosh, no. I have trouble staying awake too. Ultimately, the goal of Recollection Navigators projects the Wake Up Network is to reduce that number, right?
[00:29:11] Speaker C: Yeah.
[00:29:11] Speaker A: Just to reduce the time people are like, yo, something's up. And then going to the sleep doctor, getting a diagnosis.
[00:29:19] Speaker C: I think you being out there and you showing and representing hopefully that people, more brown and black people see this and say, yes, it's not Caucasian disease, it's everybody disease. And it can affect us also. Look, I see myself in that person. They have the same skin color as me. I should share my story too, or I get checked out.
[00:29:43] Speaker E: What do you want a newly diagnosed person to know?
[00:29:47] Speaker D: Welcome to the field.
[00:29:49] Speaker A: It's not going to be easy. I tell them to tap in to try to find a support group if.
[00:29:52] Speaker D: They ever needed anything from me and.
[00:29:54] Speaker A: Wanted to just met in my DM section. It's going to be easy to feel alone in this. They're not alone. It makes me think about this hashtag. I think it was created by Julie Flaggart. Narcolepsy not alone. It can be isolating to Exist in a world where nobody understands you and nobody sees what you got going on in media. It can be so isolating. Oftentimes I tell people in narcolepsy and get the same response every time. Unless they're like a med student or something. Everybody's I heard of it.
I don't want them to go through that. Let's find you some people who got.
[00:30:25] Speaker D: What you got and chat with them.
[00:30:26] Speaker A: And that would be great for your mental health. I think mental health is a big one too. And when you got diagnosed, make sure you find a support group. Lock in with some people you can talk to on a consistent basis.
[00:30:47] Speaker C: How do you find managing your social life with narcolepsy?
[00:30:51] Speaker A: Everybody in my social life knows I have it. What happens if they see me tired or sleepy? They know how to respond to it and they extend tremendous amounts of grace.
[00:31:03] Speaker E: Do you fall asleep in social settings and do your friends know how to manage that?
[00:31:08] Speaker A: Certain friends that manage a university. More specifically my girlfriend, my partner. She is great. This morning I couldn't stay awake during church. I think people who don't even have narcolepsy fall asleep during situation terms.
[00:31:23] Speaker D: Every time I went to church when I was younger, I always fell asleep.
[00:31:26] Speaker C: Yeah.
[00:31:27] Speaker D: Cause I have a sleep disorder.
[00:31:29] Speaker C: It just had a night bulb moment.
[00:31:31] Speaker A: That's crazy. That makes so much sense.
[00:31:33] Speaker C: It wasn't because you were bored.
Could be the most interesting sermon. Off you go. It's a relaxed environment.
[00:31:42] Speaker D: I wish I attended one of those.
[00:31:44] Speaker A: Churches that are like very stereotypically black churches where they just jump on a polytunnel. Old school. The cool hi hair is always interesting. However, I don't go to one of those churches I love. My pastor and his wife, however, tell you something. They did cool today, guys. I told Amber's my girlfriend. She says, yeah, we're gonna sit next to the fan just in case he falls asleep when he gets hot. I felt so cared for and loved. And they adjusted the fan to sit so much closer. Turned off the oscillating feature. Focus directly on me. Talk about accommodation.
[00:32:21] Speaker E: It means so much when someone makes a little change like that. Or like they just check in with you and say, are you doing okay? Do you need anything? It's actually. That's so nice because people have their own shit going on. Like they forget. But when they remember, it makes you feel good.
[00:32:37] Speaker D: Yeah.
[00:32:38] Speaker A: I have this bud who's a physical education teacher at the school I work at. I consider him a brother at this point. He saw me going through my episode one day and, hey, man, drink this stuff. He's a muscle guy, athlete. Gave me something to drink, Some type of protein powder to keep you up. I was like, this is so cool. He was able to render a difference in my face. I speak about it so much about what's going on with me.
I'm parent with my symptoms that he noticed. Another friend of mine, I consider him a brother, sees me going through it. Basically, she needed man, it's great. I don't have official, informal accommodations for my friends and co workers, and they're so dope.
[00:33:19] Speaker E: Can you tell us about any upcoming projects you're involved in?
[00:33:24] Speaker A: I'm working on tightening up the script for the young black girl with sleeping shoes in her dreams. Her classmates know about it, but they also. It's a play on just what it. Whether she's a pirate one day, whether she's an astronaut one day, it's her realities are blending a lot. And then there's just elemental. It zooms back out whatever she's experiencing. And then it says what the classmates are experiencing, which is her symptoms. So she just has optimistic view on life. I want to figure out the best way to write that book. I even reached out to a publishing company to get that done. The big project I'm working on is Shrimp's falls asleep. I'm also working on a project with high schoolers at a place called Iowa Big, and they're gonna help me shoot some and direct a kind of get to know you video about me. I want to put in that video and just say, hey, I'm Trey Burge. I got diagnosed with narcolepsy, and I just like my intro video. Like the stuff that politicians do, like how a politician introduces themselves. Let's just betray us. I'm really excited to work with them. I'm also going to be having a gallery exhibit here in Iowa where I'm going to create some video content to go along with a interactive set that's dedicated to narcolepsy as well.
[00:34:45] Speaker E: Last time we spoke, you mentioned being panelist for Wake up Narcolepsy.
[00:34:51] Speaker A: Yeah, I'm also a panelist for Wake Up Narcolepsy here in April Till onto April. Gonna be out there speaking about my experience, not the representation, y'all. But sometimes I've been confused about how I can do it if there's a takeaway. I don't want people to take as far as, like, how to be a professional. With narcolepsy, my brain can't sit and rest. How am I trying to work on an art exhibit, a book, be a panelist, gallery exhibits and whatnot. So that creates have difficulty sitting early and it gets me out there too. All with the goal of me learning and becoming somewhat financially stable. We're gonna hope that I keep pushing throughout the years and I get enough support with what I'm doing. I recently created a Patreon and I'm thinking of allowing people to support me for $5 a month. I can give them access to the stuff I'm working on and they can get behind the scenes access.
I think a big part of my story will be you gaining some type of financial freedom through my work. Even though I don't get that now, I'm really blessed.
[00:35:57] Speaker E: Important goal.
[00:36:00] Speaker C: I can see a financial breakthrough coming in the future.
[00:36:04] Speaker A: Haley, once Wake Up Entertainment grows, I want to see you and Liz. I think the more we are able to collaborate, the more we're able to stuff into the world and we share a mission. Your voice is so important. I just wanted to extend that to you and everything you're doing too. And Liz, you guys are dope. I really want Link Up Entertainment to get big enough to have full fledged movie shoots, TV shows and stuff like that. It's only gonna grow. I can't wait to find that one person that's gonna like, all right, cool. Here's this much money to produce this. What's I got going on, right? Telling your story, telling Liz's story, telling everybody's story. The art, the art gallery. I want to be able to feed you guys. Brad Booth, when I was a learn calypso awareness project, I just want to get out there and do a tour. We're going to go up, not to let you know.
[00:36:53] Speaker D: It's going to be going to be dope.
[00:36:54] Speaker A: Okay, See this footage is going to get cool.
[00:36:57] Speaker D: We just got to let the world know.
[00:36:58] Speaker C: If you want to put your money where your mouth is on a good project, hit up Trey. He has lots of ideas. Trey, do you want to tell people your handle for Instagram and your webpage currently on Instagram?
[00:37:13] Speaker A: It is sharp. I believe my P is is I think Patreon slash, he falls asleep. I'm not quite sure. I just set that up today. So the best way to get a hold of me is through my Instagram. Then I have a Facebook called he falls asleep. I'm working on the website Wake Up Entertainment just to have the other artists on there.
[00:37:30] Speaker C: Watch this space, everyone.
[00:37:31] Speaker E: Hey, you need to answer my question about where I can find a slappy shirt.
[00:37:37] Speaker A: I was saying because of what I got going on. I've never made like a financial profit from any of my shirts. And that's not necessarily the goal, I should say. I have difficulty running that stuff. I'm only one person on my projects. I'd yet to create a team of people who can help me get that out and create a product to people. I will create something you don't even have to order. Just tell me what you want and I'll create it for you. Until I get someone direct to my people, I'd rather create one on ones for people. It's going to mean a lot more. I can create it and then you can have it and then rep it. Because honestly, the people who buy my stuff end up just being part of the movement. I want y'all to be models. You don't understand. Once I get some bread, Curly, I was gonna call up Brad Puffa, see if you got a piece. I was gonna be like any professional photography studios where you're at Because I wanna get some pictures taken in your fit. Right. That's the type of stuff I wanna direct and organize. Can you find a photography studio or help an entertainment nonprofit for sleep disorders? We just need packaging, like people to see what's up so they can get excited. I don't need more people to pay for the shirts. If I can get it to you for free, I would love to do that.
[00:38:40] Speaker E: I'll advertise it for you. I'll put it on Instagram.
I'll wear it on the tube so everyone can see it.
[00:38:46] Speaker A: Other than that, it is wwebrand.com and I update that website. Oh.
[00:38:56] Speaker E: And my final question.
If you could press a red button and get rid of narcolepsy, would you do it and why?
[00:39:05] Speaker A: No.
No, I could never. This is sort of. It's ups and downs. It's got its rainy days. However, the amount of impact that I have, being able to share my story, me coming from nothing and trying to grow and be what I can be to people in the youth. I don't think I could have done that without the sleep disorder. However, it's such an integral part of who I am. I can't. I wouldn't go backwards. I don't like living a life like that, trying to go backwards. I can't do it.
[00:39:36] Speaker D: I don't know how to do it.
[00:39:36] Speaker A: But you cannot convince you though. Yes.
[00:39:39] Speaker D: There's probably those people who don't have.
[00:39:41] Speaker A: Support like I do. I understand other people's situations and why they might not want to have this disorder. Honestly, I had an accident where I hit my head. I felt really down. I didn't want to have it for sure. When I fall asleep with adultly, I.
[00:39:53] Speaker D: Don'T want to have it.
[00:39:53] Speaker A: However, it's caused me to be more empathetic, caused me to listen to people more, cause me to listen to my body more. It's caused me to do all these things that I probably wouldn't have done without the sleep disorder. I had to really pay attention to my surroundings and when I eat and my sleep routine. The thing helped me be a healthier person because of the limitations. Like I said, it's causing me to be more empathetic. If somebody tells me about their disorder, I'm more likely to sit and listen because I get it. No red button.
[00:40:19] Speaker E: Amazing. Thank you so much, Trey. It's been great having you on the show.
[00:40:23] Speaker C: Thank you for being so patient.
[00:40:26] Speaker A: Show me whatever y'all need in order to promote it.
[00:40:28] Speaker C: Yeah, definitely.
So we want to thank Trey again for coming on and sharing his story. You heard where to go, look him up and check out all his projects coming up. And we want to also thank his girlfriend for being so supportive. It's always lovely to hear when we're getting great support from people. People love us. So happy napping, everyone.
[00:40:53] Speaker E: Happy napping.
[00:40:56] Speaker B: Views and opinions in these stories may not work for everyone.
[00:41:01] Speaker C: If anything you have heard is relatable, please see a doctor for advice.
[00:41:07] Speaker B: Thank you for spending time here with us at Narcolepsy Navigators. I hope you learned something new. Please share the podcast with others. You can find us on all platforms. See you next time when we delve into another person's story.
