Episode Transcript
[00:00:10] Speaker A: 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 Kerly Bwoga, the founder of Naps For Life Narcolepsy and welcome to our stories.
Hi, everyone and welcome to Narcolepsy Navigators. Today we are talking to Angela and the topic for today is finding a healthy outlet through art. I'm your host, Kerley and I have my co host Liz here also today. So hi, everyone, I'm Kerley and Liz.
[00:01:02] Speaker B: Hi, everyone. Thank you so much, Angela, for joining us today.
[00:01:06] Speaker C: Of course, I'll do my best to give as long as I can.
[00:01:11] Speaker B: No worries. Yeah, you were just saying it's almost nap time coming up for you and it's been a long day for me and Caroly over here. It's almost always night time. So we're all a bit sleepy right now.
[00:01:22] Speaker A: So this will be a good representation of what it sounds like to have narcolepsy and to be near a nap time.
So they will hear it in our voices. So it's. Yeah, it's great. Yeah, that's all fine. So how was your day today, Liz?
[00:01:39] Speaker B: Yeah, it was all right. So I. About a month into a new job, so it's just. I'm really enjoying it but it's so tiring and every day is a lot of learning. So by the time I get home I'm just completely dead and don't have a lot of brain space or energy for things like making dinner or tidying up. But I managed to work from home yesterday and that meant I could socialize in the evening, which was nice because I haven't done that in so long. So, yeah, enjoying the new job, but everything else is pretty much on hold right now while I get used to it.
[00:02:16] Speaker C: Oh, man, a new job, that's a lot of undertaking. Yeah, in general. That sounds horrible.
[00:02:21] Speaker B: Yeah, it's a lot to manage, everything. But Carolee, how is your week going and how are you getting on with Way Kicks as well?
[00:02:29] Speaker A: I'm on week three of the Way Kicks. I'm on three tablets now, but I don't feel any different. I'm still sleeping. Yeah, I sleep on the train. I kept getting up, like waking up in a jitter. Oh my God, is that my stop? Because it was different route. So I went to See, a friend of mine that I've known Since I was 11 years old, we went to high school together and we had like a lunch dinner for my, you know, for my birthday and a catch up, which was well overdue. So it was really nice to see her and her two kids and catch up and. Yeah, so that was a nice birthday lunch dinner, so. Which is nice. So then I don't even have to cook dinner when I came home, so that worked out. But she showed me a different route to go back. And so when you're not familiar with a route, it means that you have to keep more alert. And so I just kept waking up in a. In a jitter. In a jitter. And every time the train stopped. Yeah, yeah. And then I was stressed because I kept thinking, oh, my gosh, I can't reschedule this on this podcast because I read a reschedule of Angela from last week because it was mom's birthday last week and we went out for mom's birthday on the Thursday, and I was just like, oh, my gosh. You know, get home in time and stuff like that. So. Yeah.
[00:03:39] Speaker B: Yeah. It's hard to keep plans when you're a sleepy person.
[00:03:43] Speaker C: Oh, it's hard to make plans to be out in. In the world. For me. I can't be gone for more than two hours.
Sorry. I have a. I have a rat, and he's an emotional support rat. He's in.
Is that. Is that okay with you guys? Yeah, I'm scared of spiders, so if someone just whipped out a spider, I'd freak out. So this is a rat. His name's Didymus. He's in my shirt right now. Uh, so, yeah, with. What was it? Damn it. Rat sleep.
[00:04:13] Speaker B: You're saying you. You ain't really go out for like, two hours?
[00:04:16] Speaker C: Oh, oh, yeah. Because I. I have really bad cataplexy, so it's triggered by intense emotions, which is great because I'm bipolar, so that happens a lot. And I don't go anywhere by myself because of my cataplexy. So I have. My caregiver is my best friend, and she helps me with, like, the trash and dishes and helps me sweep and pick things up off the ground because I get. I get really. I get dizzy and then I have cataplexy attacks leaning over too long, like, cleaning the litter box or something. So.
Yeah, it's very helpful.
[00:04:52] Speaker B: Sorry, didn't see the rat's head breaking out.
[00:04:56] Speaker A: He wants kisses.
[00:04:58] Speaker C: It's really great having her there, but trying to spend any Amount of time out of the apartment is damn near impossible. I have to bring my neck pillow with me every single time and I have to bring a little walker with a seat. Now every time I'm going to go anywhere that I know I'm going to be spending any amount of time walking any store that I need more than one or two items for. And so it's a big deal for me to leave my apartment.
[00:05:23] Speaker A: You had said you had to take your cat to the vet.
[00:05:26] Speaker C: I did.
He's been having some problems with his stool and then throwing up. And so that got me scared and so I took him to the vet and they just put him on some antibiotic right now. And then there's going to be like more of a charge for examining a stool if it keeps going on. So I just am going to put him on all the meds right now and hope that that helps for a little bit. If not, then I've got to take him back in. But he's 11 and he's my, like, soulmate, so we cuddle together. He tells me exactly when it's nap time. If, if I am over by five minutes, he comes yelling at me. He's like, it is time to nap, mother.
And nap. At nighttime. 9:00. Right at 9:00. He knows exactly when it's time to go to bed. It's crazy.
[00:06:17] Speaker B: Oh, like an alarm clock.
[00:06:19] Speaker C: Yeah.
And can you tell us about your.
[00:06:23] Speaker B: Journey with narcolepsy and your diagnosis?
[00:06:27] Speaker C: Oh, sure.
Well, I was diagnosed until 2007, when I was 25, after I graduated college. So I was undiagnosed, but I had been the sleepy one in every family function in the corner, asleep. I'm the one weirdly asleep in the hammock out back for 17 hours. I'm. I mean, there have been signs my entire life. And then I, I was. I was diagnosed with clinical depression at 5. So a lot of my, my sleepy issues were masked by my depression. My, my, my mental health issues. So. And then the label of lazy. So I had to work extra, extra, extra, extra hard just to feel like I was like, somewhat functional like other human beings. And, and I went through. I actually got diagnosed with cancer when I was in college. So I went undiagnosed through college of. With any meds and dealing with cancer.
[00:07:35] Speaker A: Wow.
[00:07:35] Speaker C: And then it was. And then I came back and then got diagnosed with bipolar and then sleep apnea and narcolepsy with cataplexy.
[00:07:45] Speaker B: Gosh. Okay, so there's a lot going on for you.
[00:07:48] Speaker C: Well, that's, that's just a few of them. But the, it definitely the narcolepsy is the worst out of all my health issues because it, it claims every second of every moment. I mean not, not even when I'm asleep, but not even when I'm awake. But also when I'm asleep is the lucid dreaming. The lucid dreaming is evil by the way. I live entire lives and I go through like relationships with somebody and I'm and like have, have children and grandchildren and I'm old and then I wake up and I am shocked into the reality that I live alone, that I've never had these experiences that, that I don't have children and I probably can't and won't, you know, like it's a hard reality.
Waking up from lucid dreaming when you're that hard into that. So I can't even find any, you know, respite in my sleep. So it's, it's double edged sword everywhere you go.
[00:08:48] Speaker B: That's really difficult.
And.
[00:08:50] Speaker C: Yeah.
[00:08:51] Speaker B: Have you found any medication that has helped at all to manage your symptoms? Like whether your, it's your sleepiness or your staying awake at all, like as if helping you to sleep at night or healthy?
[00:09:03] Speaker C: Yeah, I've tried so many different kinds. I've tried weight gigs, it didn't do anything for me. I've tried Xyrem and I had a really bad reaction so I don't take that. And I'm on an antipsychotic and they won't let me do both. Same time I do have, I'm on new vigil right now once a day and then a knockoff Adderall twice a day. So even when I'm fully medicated, I have to have a 2 hour, at least one 2 hour nap every day and that's on a fluid in a day. So if I'm not medicated or I'm having an extra sleepy day, it's at least two two hour naps. So I can sleep anywhere between two and six hours of just naps during the day.
[00:09:45] Speaker A: I love to hear that. You know why? Because when you go to the doctors, they'd like to say, and I'm glad when my sister will hear this interview because she's always saying to me, Kenny, you know you're not supposed to be having that two hour nap. The doctor says you're only supposed to sleep for half an hour. It's so fun. It's so wonderful to hear another narcolepsy say, not someone who has IH because usually ih people that are saying they need two hours or whatever nap saying, no, actually, I needed to have two hours of nap multiple times a day.
[00:10:16] Speaker C: It does. It feels like I'm not sleeping for a full hour because I have to. My body goes into paralysis. So I'm in sleep paralysis for about an hour of that. In between hypnagogic stage state where I'm jerking and I'm dreaming, but I can hear everything. I do my earplugs, eye mask. This is ridiculous. Earplugs, eye mask, a teeth guard because my clenching my teeth and I have a cracked tooth and then a mouth tape because my jaw opens and I have dry mouth. So I have all that plus my cpap.
[00:10:49] Speaker A: You sound like me.
[00:10:51] Speaker C: Yeah.
[00:10:52] Speaker A: Imagine what we look like. Like, my sister's like, someone from outer space.
[00:10:57] Speaker C: And I tried to rhinestone it one time because I had a full face mask. And I was like, it just needs rhinestone. But it had. It was made with silicone, so of course the rhinestones didn't stick to.
[00:11:06] Speaker B: He tried to doze it up.
[00:11:08] Speaker C: I did. Of course you did. Like, look, this is my nail lamp.
[00:11:12] Speaker A: Oh, wow, that's pretty.
[00:11:15] Speaker C: I, like, my nails are not done right now, but they.
They're bound to be something pretty fantastic.
[00:11:23] Speaker B: I don't think the listeners will see the visual of that. But your nail varnish, your nail lamp was absolutely covered in rhinestones.
[00:11:31] Speaker A: That's right.
[00:11:31] Speaker C: Yes.
[00:11:32] Speaker B: I guess you stuck on yourself.
[00:11:34] Speaker C: I do. When I get into a creative rut, I tend to rhinestone most things that I come in contact with.
[00:11:44] Speaker B: Wow, you're like a fairy or something.
[00:11:49] Speaker C: Everywhere.
Well, that's funny you say so because glitter was part of my treatment plan with my really, really bad and my mental health. And it also helped stimulate me with my narc love seedling because I would carry around little capsules of glitter. And if I started, like, having a down, like, spiral moment, I would open up the glitter and just. Just open it and have a, like, sparkly moment. It would immediately give me serotonin and it would be like, oh, sparkle. What's the sadness? Oh, yeah, that's right. Okay, we're good. We're good. No, they love that.
Well, I also used to spread glitter around the carpet when I was really, really sad because I would end up on the ground crying a lot. But I would open my eyes and I'd see something glitter, and I'd be like, you know what? There's still something beautiful in the world to look forward to. So that kind of helped Me take my next breath, you know?
[00:12:38] Speaker A: Yeah, I like that.
[00:12:39] Speaker B: And you've got a support rack.
[00:12:43] Speaker C: You tell us a bit more about that because I've never come across that before. Yes, this is Didymus. He is. He's about a year and a half. He has a brother. He has a brother. Ambrosius. Ambrosius.
[00:12:57] Speaker B: That's small.
[00:12:59] Speaker C: Oh, he's really small because he's a little sick. He's got to be on antibiotics twice a day for the rest of his life. But it's okay because we get that syringe down your throat pretty easy now, don't we, buddy?
So, yeah, they have to come in Paris, because they're bonding creatures and they like.
[00:13:16] Speaker A: They.
[00:13:16] Speaker C: They're my heart rats because I can call them. And they just came to me. They know me, they know my voice. I've left their cage open by mistake and gone to bed. And they're right there in the cage, warm and snuggly, waiting for me to give them treat like they're look. I mean, they're the sweetest little things ever. And they're so damn smart. They're so, so smart. I am so impressed with how amazingly comforting having pet rats can be. And more than rat hamsters or even ferrets because of their intelligence.
[00:13:53] Speaker A: Ah.
[00:13:54] Speaker B: Have you ever thought about having a support dog for your cataplexy? Because I have heard of people doing that, although I've never met anyone with that before.
[00:14:03] Speaker C: I have thought about it, but there's a couple things that are keeping me from doing it. I have a cat and I live in a very small one bedroom. And I would also have to be able to get them outside and go do walks by myself on a regular basis and all that. That's too much for me because my cataplexy attacks are 15 minutes long. So it's really unsafe for me to be anywhere and have a cataplexy attack without a human being right next to me, stopping people from calling 911 and stopping from touching me and like taking my things.
[00:14:40] Speaker A: Can you tell us more about that, Angela? Have you had some experiences where people started to touch you and call 911 when it wasn't necessary?
[00:14:48] Speaker C: Yes. I have accepted that no matter where I go, I'm going to have an attack. It just happens. So I bring my neck pillow with me and if I know I'm going to be walking around, like I said, I bring a little walker with a seat. And that's taken me years. Like I only started doing that, I'm 40 now. Oh, my gosh. My birthday's next month. I'm gonna be 41. And I only started bringing a walker with me to stores about the last two years. So I've been on the ground of many o stores, and I don't recommend it. But I was really reluctant to want to bring any kind of device with me, like, even a neck pillow with me. But now it's attached to me everywhere I go.
The question was, what? Sorry?
[00:15:29] Speaker A: If you've had experiences where you were in public and if someone tried to come up to you and help you or call the ambulance or something like that.
[00:15:36] Speaker C: Yes. That's why it's very hopeful having someone with me. My mom was with me for years before I moved up to Washington. And I had my best friend be my caregiver. She stops people now because people are like, do you need help? Do you need. Just because they see. They see me slumped over, completely paralyzed. Luckily, I can stay upright. But I twitch. I have hypnagogic twitches during my attacks. So it looks like I'm having a seizure. It scares people. People think I'm overdosing, that I just died. I had an attack at the doctor's office the other day, and I was laying down, and I said, okay, well, I'm probably going to have one now that I'm comfortable. And I was. And the first thing she did was take my pulse.
[00:16:18] Speaker B: And I was there still.
[00:16:19] Speaker C: I'm still here, girl. I'm good.
But, yeah, people do try and take my pulse. But there was. There was one time that really pissed me off. I was in a medical facility at a mental health. I was right after therapy, so I was done crying, and I was really, really in my moment. They had called a cab for me, so I was waiting for the cab. Sitting there and waiting. A force is another one invitation to have an attack. And sitting and waiting. So I had an attack. And the cab driver came up, called my name. They pointed me out. I wasn't responding naturally because I was having an attack. And then, like, nurses, doctors, everyone started coming over and freaking out and, like, taking my pulse, putting blood pressure on me. And then there was. Somebody was like, we should check our chart. And I was like, you know what? As soon as I came out of it, oh, no, no, sorry. They use smelling salts on me. They used smelling salts on me because they thought I was overdosing.
And this is.
[00:17:13] Speaker B: I never had it.
[00:17:15] Speaker C: It didn't do anything other than go, like. It burned enough for me to open my eyes really big. And Then collapse back into the cataplexy. And if they would have waited one or more two minutes, I was starting to blink or starting to come out of it. So the first thing I said when I got out of it is, why did you move my medical alert bracelet? To check my pulse and not look at my medical alert bracelet.
[00:17:38] Speaker A: Oh, my gosh.
[00:17:40] Speaker C: Narcolepsy with cataplexy.
[00:17:43] Speaker A: Oh, my gosh. And you were with doctors. And imagine if you were on the street with just layman people. Oh, my goodness.
[00:17:50] Speaker C: A patient yelled out, maybe we should check in her chart to see if there's something, an underlying condition, a patient sitting there.
So I was up. They were like, oh, so what's going on? So. So get the guess. I'm. I'm a little extra. So I didn't want this to happen again. And so I didn't go very many places. I went to the dispensary and I went to the doctor's office and I. And then I went to therapy. Those were like the main place. So I made a pamphlet of my narcolepsy with what it looks like, what it. What you can do, extra things. Like a whole ass pamphlet with pictures of me, a sleepy rat, everything. Where the hell is it? But I gave it to the front desk people who would be there so they would see me on a regular basis. They would know what's going on so they would not freak out and crawl. 911.
[00:18:41] Speaker B: My gosh.
What is it actually like to have a cataplexy attack that is that long and intense?
[00:18:49] Speaker C: Well, I'm dreaming the whole time and I'm hearing everything, but it's really annoying because it's like, if I could just fall asleep right now, that'd be great. Just fully, fully fall asleep. It's those moments of when you're right, getting ready to fall asleep, but you can still think. You're like, come on, Bri, go to sleep, go to sleep. And it never happens. It never freaking happens. You just are in this limbo. But the worst part about it is obviously not being able to move.
I stopped really even trying to move because there's no point. It just causes frustration. And I did learn I can cry during cataplexy attacks. And that's pretty horrible.
Yeah, I have that one. Yeah, there was a couple times where I full on panic attack while having it. Then it caused a cataplexy attack. And then I continued crying during my attack.
Yeah, that wasn't very fun. And I used to throw up a lot. I know at this out of nowhere, I threw up for four and a half years and would have attacked at the same time.
It was danger.
Exactly. Very, very dangerous for me to do anything. It's. My cataplexy is the worst of it because it's so unpredictable. And I know that if I just sit here in my little desk and if I do my art on a very minimal, and I watch my movies and I stay highly elevated with my medication and my cannabis, like, I'm good.
Don't rock the boat. Don't trigger me. Let me do my art and live in my little happy zone. My. Because my narcolepsy is so bad, I can't work. So I. I'm on disability and I have a caregiver. I moved to Washington state, like I said, to be near my best friend, who offered to help me because she saw that I was flailing and had no help and no support. And so she's my state caregiver now and gets paid to hang out with me. And it's.
[00:20:44] Speaker A: That's nice.
[00:20:45] Speaker C: It's so.
I'm lucky that that's how it happened. It's sad, though, that my parents were there helping me for a long time, but then they decided to move out of state and kind of leave me to deal with what I've been doing, and they knew I couldn't drive, so I'm like, how do I live?
[00:21:04] Speaker B: Yeah, that's so tough. By the sounds of it. You know, you are quite limited in what you can do because of the cataplexy.
How does that affect your life? Like, how do you feel about that?
[00:21:17] Speaker C: Horrible.
[00:21:18] Speaker A: It's crippling.
[00:21:18] Speaker C: I have at least one to two breakdowns about it a week. Like, and I know it's just me feeling sorry for myself about my situation, but also it's very unfucking fair. Like, man, I'm going to try and do this without crying. I know I'm a fun person. I'm exuberant. I have, like, good qualities and people. It just. It sucks because if I was, like, an introvert that didn't want to talk to people or that didn't want to have human interactions, then this would be the life for me, you know? But it's complete opposite. I crave human interactions. It's very sad that narcolepsy has taken so much from me in the form of being able to go out and meet people organically and dating. I mean, that's a whole nother object of sadness I will probably never have because I just don't have the Ability emotionally right now to start over, but also, like, how the hell do you date someone when you have this bad. Of narcolepsy? Like, when you have this bad cataplexy and I can't be alone with anybody, it's terrifying. I also have orgasm plexi, so I have.
[00:22:28] Speaker A: That's looking worse. Yeah, I know from hearing stories of other people who have had that, for men experiencing it, they think, oh, yeah, I've done a really great job. But actually, no, it's not that you've done a great job. I'm actually, you know, having an episode right now.
[00:22:46] Speaker C: Yeah.
[00:22:47] Speaker A: I'm actually praying, oh, my God, can I get out of this?
[00:22:50] Speaker C: That's the scariest thing. You know, obviously you should trust who you're going to be sleeping with, but I mean, like, to another level where you're like, I could become very vulnerable in a very vulnerable situation, and I need to be able to know that I'm going to be safe during that time. And I was. I was. It was six, seven years before I allowed myself to even try. And then. And then when I had an attack after we had intercourse, he just held and held me and sang to me, and I was like, this is. This is possible. Like, you can have this.
[00:23:20] Speaker A: Awesome. Well, that's true.
[00:23:23] Speaker B: It's such a vulnerable thing, isn't it, to have to kind of build relationships when you have a health condition that significantly impacts your life, then also on top of having to. Yeah, when you're intimate with someone and then that causes you to have cataplexy in that moment, it's a lot to deal with.
So, Angela, you have a support rat, like we were saying, and you're also, from what I can see with the colorful hair, a very creative person. Can you tell us a bit more about your creativity and how that helps you to manage narcolepsy and get through the bad times?
[00:24:06] Speaker A: One question, Aja, before you answer that, I was saying to my mum about your artwork and stuff, and then I said to her, I don't know how she does it because she does these beads and you make it from the beads, so when you see it from far away, it looks like a real picture, but she has catapults. And I don't understand how she do this, because if it was myself when I was putting these beads together, I can just imagine me just having caterpillars in the bead. Just fall everywhere and start from scratch. And I'll just be like, oh, my gosh. So please tell me, how do you.
[00:24:33] Speaker C: Manage Well, I have to be honest, I have dropped a few things here and there on my portraits, and the beads did go a little wonky. And there's some cuss words that do go a flying, but I'm pretty good about what I feel like I'm starting to jerk a little bit or my muscles start to get weak at all. I have a giant vape pen too, so I set. It's heavy. So I set that down, and then I try and evaluate. I'm honest with myself because if I push it to a point where I can't do it anymore, I'm going to mess up, and that's going to happen. So I'm pretty aware of when my body's telling me, you need to stop. So I stop for a few seconds. Then I'm like, I could push through, or do I give up? Nope, we're done. We're done. We're done. Yeah. This is my danger zone. I call it a danger zone because I try and have my nap no later than two. I lay down no later than two, but a lot of times I can't make it till two. So right before due to I start.
[00:25:30] Speaker A: To get loopy, we're going into the close to the loopy zone.
[00:25:35] Speaker C: Now we're going into the loopy drunkies of. Of determination. We're gonna do this. Oh, art.
I have a Bachelor of Fine Arts.
[00:25:47] Speaker B: Oh, amazing.
[00:25:48] Speaker C: San Francisco Art Institute. So I got go to San Francisco and I got to play with all the fun cool artists around there. And I've made many old projects I could fall asleep in. And I had a sleeping couch in the library. I mean, obviously most of my life have been signs.
I just had to work with it because I knew that it was going to be in my way, you know, dark. Whoopsie. I mean, so when I'm working on my beads especially, I can really just get rid of everything else in my brain, everything that caused all the medical issues that I have to deal with. Like, I have a lot of medical trauma in my life, and all the narcolepsy is just right up there, just pushing my buttons. Every damn day. I pop on a horror movie. I get, you know, very elevated with my cannabis, and work one beat at a time. I can turn off everything. It is the best way for me to escape. It's very therapeutic because it's just like Tetris because you can look in the shapes of. They're telling me of the pattern. I'm like, I could do that. I can do that. I can do that. And you just keep saying and sometimes I make sound effects when I put the beads in each beat. Each beat.
Wait, I'm sorry, did you say you.
[00:27:09] Speaker B: Watch horror movies whilst you do that?
[00:27:12] Speaker C: Yes, for specifically horror and sci fi. Because I can't feel emotionally attached to the characters. I can't have any feels, I can't feel constant trauma. I'm an empath, I will cry, I can't do that shit. And then that causes me to have cataplexy attacks and then it ruins my day because then I maybe I don't get out of it and then I've got to go lay down for two hours. A movie could literally ruin my day.
[00:27:37] Speaker B: But what about cartoons?
[00:27:39] Speaker C: Why, why horror film?
[00:27:43] Speaker A: I don't know.
[00:27:43] Speaker C: I mean the thing is I'm not like a memorabilia of horror movie type thing. I don't even have a favorite horror. My favorite of creature features probably like shark movies. All those really bad like sharknadoes and like six headed sharks. It's because they're so corny and funny and predictable and I know, I don't know why, but it brings me comfort. Like I know, I know that bitch that goes down that alley, obviously she's going to die, but how does that.
[00:28:09] Speaker B: Not mess with your dreams? But yes.
[00:28:14] Speaker C: Because my list of dreams, anytime something like shady happens in my sleep, like I'm all, no, let's, let's, I change channels. I don't know if you could do that when you're lucid dreaming. But I literally just, I did it recently.
[00:28:28] Speaker A: Yeah, but it took me ages. Someone at a conference taught me how to do it. Usually you have a lucid dream of something that you've had before. It's a repetition dream. So if the dream is not new and it has, it's, it's a dream you've had before, you know what's going to happen next before it happens. So just before the thing happens that's going to happen next, change something. So for instance, if you're going to go into a room and it's dark, switch the light on. If you don't usually switch the light on, it will pop the dream open. So it took me weeks and weeks and weeks to practice this and it wasn't working. And then one night just in this dream and was on the bus and after this bus scene it gets very dark in the dream, it gets really, really bad. And this is like, will make me, once I get out of the dream, I'd be really like really frightened. I'd need to watch comedy for Hours to get out of my head, and something just said, get off the bus. Jump off the bus. When the doors open, jump off the bus. And I jumped off the bus and the dream broke open.
[00:29:31] Speaker C: Yeah.
[00:29:32] Speaker A: So now whenever I get a dream that I've had previously, and it's a really scary one, those really horrific horror ones, I practice this. I'm like, I'm looking in the dream ahead for any avenue to break the dream open. And it works, but it takes a lot of practice.
[00:29:48] Speaker C: Yeah. I used to have dreams where I would die in my sleep. In all of three times in my life, I remember it happening. This is all before I got my seat back. So literally I probably did.
But it was getting. Every single time it was me getting shot, and it was the.
This might be a little graphic, but, like, I could feel every little bit of the blood draining out of my body slowly. And I could feel my last breath and I would choke up what I thought was blood, but it turned out just being saliva and it. To the point where I had absolutely no breath, no nothing of it. And then it would jerk me away. And I'm like, did I literally just die?
Because that was scary as hell. And that happened. That's been three times. And every single time it's been a gunshot.
Yeah.
[00:30:35] Speaker A: I've been. I've been shot. I've been buried alive.
I've been, unfortunately, raped. I've been attacked. Yeah.
[00:30:44] Speaker B: Tell us about you.
[00:30:46] Speaker C: Well, let me give you a little tour, because my booth, I'm trying really, really hard to. Can I flip my camera? Yes.
[00:30:53] Speaker B: To describe it for the listeners who aren't gonna.
[00:30:56] Speaker C: Oh, that's right.
[00:31:00] Speaker A: Oh, wow. It's amazing. If only you could see it. So, listeners, you should encourage the other people who have narcolepsy to come on and show their faces because then we could see the stuff. Like, if you could see what we are seeing. So we can see drag queens. Like pictures of drag queens made from.
I'll let Angela describe it to you.
[00:31:24] Speaker C: Yeah. These are made with fuse beads. But what I do extra is that I put makeup on them and I do lashes with my cricut machine. This one has rhinestones. There's some giant ones over there that I. That I'm.
[00:31:35] Speaker A: Oh, wow.
[00:31:36] Speaker C: The big ones are right here. Yes. Instagram. And I'm actually more active on TikTok. And I have some narcolepsy videos that have gone viral on there, too. Awesome. Angela. Thirteen.
And these pieces. This one I just finished makes my heart so damn happy. It's Trixie and Katya.
[00:31:58] Speaker A: Oh, wow.
[00:31:59] Speaker B: That's so good. Huge portrait.
[00:32:03] Speaker C: It is. Ginormo.
[00:32:05] Speaker B: They're RuPaul related, right?
[00:32:07] Speaker C: Yes, they are. Okay, There we go. The makeup is the funnest part about it, I think you do the beating.
[00:32:13] Speaker A: First, and then you put the makeup on second.
[00:32:16] Speaker C: You have to iron it, and then I put the makeup on it. Yeah.
[00:32:19] Speaker A: Oh, wow.
[00:32:21] Speaker C: And I'm hoping that these up high will pull in some people at DragCon, because I need the right type of people to have their eyes on my art because it's so niche.
[00:32:36] Speaker A: Yeah, it's a special niche. I am not into drag queens, and I would buy one of your pieces. It's the quality. It's just so good. I think good art is good art, even if it might not be, like, something that you're into. You know, you can tell when you see, like, something that's quality work, and you think, yeah, that's. That's a nice piece.
[00:32:55] Speaker C: I actually do other faces other than drag queens. I've done old people, and I've done children and animals too.
[00:33:02] Speaker B: That's so cool.
[00:33:03] Speaker A: We will put Angela's link in the bio for everyone to check out her work. It's so amazing. So everyone check it out and support our girl.
[00:33:12] Speaker C: Thank you so much. It's definitely so important for me to have a creative outlet when having to deal with a chronic condition like narcolepsy, because it's just.
Otherwise, I would just sleep and be sad. I would have no purpose. I would have no drive. I would have no. Oh, that piece. I just have to do that one last detail on it, and it'll look super dope, you know, like, it gives me a reason to get out of bed. And this little business that I have, Sleepy unicorn pixel art. I love that it gave me drive and purpose to have a shop and sell my art and get it out there. And another reason why I want to get my art out there is because I can't do it. I can't get out in the world very much. I don't get to go to drag shows. I don't get to experience a lot of the world that the world has to offer because of my narcolepsy, and I've had to accept that. And instead of sitting here and crying about it, which I still do, but I can do something about it by getting my art in the hands of people that are all over the world so that other people can see it, you know?
[00:34:08] Speaker B: Yeah. It's a little piece of you getting out there.
[00:34:12] Speaker C: Yeah. And it is nice that I've given nine of these portraits away to the Rue girls already. So they know. They definitely know who I am. And it's really exciting that I'm starting to get well known in a certain circle. You know, I just. I'm waiting for my website to be finished any day now. And then I feel like I'm going to go real legit. But it's been hard finding the motivation to do a whole business because I'm just a creative person. I don't want to be the marketing. I don't want to do all that other stuff.
[00:34:44] Speaker A: Yeah, I can so relate to that. Yeah. All the marketing and publicizing and stuff. It's just like a whole different world. So different from the creative side.
[00:34:57] Speaker C: It really is.
My dad saw me struggling and so he helped with some business sides of the legal stuff and whatnot to help me, like, be an actual business. So that's why I'm really pushing to be able to get to go to a Dragon and have a booth. But that's another thing that my narcolepsy is going to get in the way of. Like, I have a hard enough time going to the convention and attending it, because I have. Last time I went this. This last year, I had five attacks in one day. I missed an entire hour's worth of DragCon being paralyzed and with my eyes blew out. So that pissed me off. But. And I have to have. I like to run around as much as I can and think that I'm. I'm cool and forget everything. But then I have someone say, okay, honey, you've been walking around for too long. You need to sit down. Because I like to get in my own little happy world and think that everything is all honky dory and nothing's going to touch me and I'm going to be great, and then I have to be brought down to life. Someone has to tell me you're getting too excited.
Please watch your levels of excitement. Do you know how hard that. That, like, hurts after a while? Just let me be free amongst the clouds. Yeah.
[00:36:08] Speaker B: I tell you to get that.
[00:36:10] Speaker A: It can be hard to try to find the balance of being free and also expressing yourself because you're an extrovert like myself. You need people and you feed off other people, so you're feeding off their energy as well. You want to, you know, be free.
[00:36:27] Speaker C: Yeah. The booth this year I'm hoping I can be awake enough for it's. I can't do both. Like I used to before the pandemic. I used to do Like a first Friday, where every first Friday in the evening, it would be like an art walk, and then I would put my stuff out there. It just. That became too much because it was too late, first of all, and that it was too long of a. Of a time, and then it was too taxing on my body. So that was another thing that I can't do because my narcolepsy just keeps getting worse and worse.
I don't know about you guys, but it's just. It's getting worse and it has been declining over the years, and I don't know what that's going to look like for my future, because, damn, the way it is right now, already not very looking forward to that.
[00:37:15] Speaker B: It's such an interesting thing to talk about because it's not something that I ever really want to think about, about getting older and how my narcolepsy is going to change and how it could potentially get worse.
Yeah. But, you know, from hearing other people's experiences, you know, obviously most people get more tired as they get older in general, so that's potentially even more so with people with narcolepsy. But something I try and hold on to is that medication rules to get better.
[00:37:46] Speaker C: So I asked my neurologist last week, I had an appointment, and I hadn't seen her in a year. And she goes, any other questions? I was like, yeah, you got a cure for narcolepsy yet? And she goes, no, not yet. But actually, looking at our scientific, you know, state is where we are right now. I'm hopeful that that will happen sometime soon. I was like, don't be giving me hope.
I need some receipts to follow up with that hope, please.
[00:38:17] Speaker B: Is there anything, even though it is so hard living with this health condition, is there anything that you feel grateful for that narcolepsy has brought to your life?
[00:38:27] Speaker C: Yes, the ability to give me the time to work on my art. If I was a regular 9 to 5 schmo, I would end up having to work, you know, all these jobs that I absolutely hated, and I would have no passion in them, and I would feel even worse than I already do about life, and it would really affect my mental health. I'm. I'm very thankful that it has given me the opportunity to focus on what matters to me, and that's my art.
[00:39:00] Speaker B: Yeah, thank you so much for sharing all of that with us. And I'm definitely going to check out your Instagram page, see if you can ship.
[00:39:10] Speaker C: Oh, yeah, definitely do that. Oh, you know what? I did a couple of Years ago, I shipped a portrait of Alaska to Australia.
Wow.
Remind myself of these victories, you know, because I keep forgetting that this, you know, big things have happened. I've met Adore Delano, and she had a portrait of that I gave her in 2017 in her bathroom for two years.
[00:39:32] Speaker A: Wow.
[00:39:33] Speaker B: That's awesome.
[00:39:34] Speaker C: Like, I'm amazed that people like my art as much as they do, because, I don't know, I send it out and I'm like, hope for the best.
[00:39:42] Speaker B: Yeah.
No, I'm wonderful. And, yeah, I think you continue to be your colorful self with your bright colored hair.
[00:39:51] Speaker C: Oh, I have to. It's what gets me through the day. You'll see having all these colors and maximalism and, like, something pretty and something I love. Everywhere I look, I have to have that.
[00:40:01] Speaker B: And glitter in the carpet.
[00:40:04] Speaker C: And glitter in the carpet. Yes, it is necessary. That's glitter in the carpet. That's. That's my next single.
[00:40:12] Speaker A: I'm also glad that in the spaces that you are in, you are also able to raise awareness, like in the space. I recently heard when I was at college that there is one drag queen that has narcolepsy.
[00:40:27] Speaker C: Yeah. James Bond. I met her. Yeah.
[00:40:30] Speaker A: So I'd never heard of her. When I started the course, hairdressing course I'm doing this year at the college, two of the teenagers said to me, when I. The teacher asked me to describe what I had said, the class was aware. And afterwards they came up to me, they thought, oh, like the drag queen. I said, huh? And then they're like, yeah, there's a drag queen that has this. And I was like, all right. And then they were telling me, and then I went and looked it up. So I think it's great that you're raising awareness in those spaces so more people will be getting to know what's happening.
[00:40:58] Speaker C: Yeah. There's a lot of misconception in the media of what narcolepsy is, how it's more of a joke in the media than it is to anything else. Everyone pretty much just thinks that you fall asleep at any point in time. It's what the TV tells you. That's what the movie's telling you. But it's so much more scary than that. You're paralyzed. You can't move, and you're awake the whole time and you're dreaming. Like, for 15 minutes, it's just down. You have nothing. Your life has told you. Give me a minute and I'll be back in a few. It's just what my body tells me.
[00:41:30] Speaker B: Yeah. I think the media really doesn't differentiate between narcolepsy, sleep attacks, and cataplexy, which are two very different things, but look kind of similar in the way that you, you know, you look sleepy or you're lying down to some of that.
[00:41:47] Speaker C: Yeah. When I met Jinx, I said, how are you doing this? How does it feel to be able to be such a successful person while still having to deal with narcolepsy? And she's like, it's fucking incredible. I was like, you know what? You get it, bitch. You get it. I don't. Yeah, cataplexy. But still, the hours of the touring, she's doing Chicago live on Broadway right now. Wow. She's intensely successful and has.
Gives me quite a bit of pride in her knowing that. How hard it is for me to just struggle to move from my bed to my chair. You know, it's great to see someone that has narcolepsy really, really successful.
It's just good to know it can happen for some people.
[00:42:39] Speaker A: Yeah.
[00:42:40] Speaker B: She's getting out there.
[00:42:41] Speaker A: Yeah. But you're. You're doing an amazing job as well, Angela.
[00:42:45] Speaker C: Yeah.
[00:42:46] Speaker A: And you have to keep pushing on. Your work is amazing, and I'm glad it's getting out there and you're getting to share your art with the world. It's wonderful.
[00:42:55] Speaker C: Thank you so much. That really means so much to me. I put so much love into each of my pieces. And, oh, my gosh, real quick, I was ironing my last piece on Live on Tik Tok, and I was. I don't know what I was saying, but I was like, you get a. You iron this. I don't know what I'm saying. Something like that. I got tagged for bullying and harassment because I was talking to my portrait.
[00:43:18] Speaker A: Oh, no.
They thought you were talking to another person.
[00:43:24] Speaker C: Yeah, I was talking to irony.
[00:43:29] Speaker A: That's so funny.
[00:43:31] Speaker C: So there's a lot of love I put to these pieces.
[00:43:35] Speaker B: Love and abuse.
[00:43:38] Speaker C: It gets the job done. I mean, we're. We're working. We're working with this.
It's good.
[00:43:44] Speaker B: It's amazing.
[00:43:45] Speaker A: I'm excited.
[00:43:46] Speaker C: Yeah.
[00:43:46] Speaker B: Excited to see more of your art. Definitely getting Instagram.
[00:43:50] Speaker C: Thank you guys so much. I really appreciate you giving me some time to just talk. I don't get to really just talk very much, being all cooped up in this little hidey hole of mine.
[00:44:02] Speaker B: Well, thank you so much for joining us.
[00:44:05] Speaker C: Yes. Thank you so much for listening to me.
[00:44:07] Speaker A: Liz, you want to ask your final question that you like to ask everyone?
[00:44:11] Speaker B: Yes, I Almost forgot. Okay, if you could press the red button and have never experienced narcolepsy and.
[00:44:21] Speaker C: Get it out of your life, would.
[00:44:22] Speaker B: You press it and whatever your answer.
[00:44:24] Speaker C: Is, why, yes, yes, yes, yes, yes. I'm so tired of being so tired. I don't know what it's like to have one night of actual restful sleep. I don't know what it's like to feel like the functioning human body. And I think I would still be an artist because I'm so mentally ill. That's a lot of that is where my art passion drive comes from. But the narcolepsy, I could do very much without.
Yeah, I will preserve, but.
[00:44:54] Speaker B: Well, thank you so much for sharing your journey with us and being so open and honest about how hard it is at times.
[00:45:01] Speaker A: Also.
[00:45:01] Speaker B: Yeah, the creative things that keep you going. And I'm sure our listeners will enjoy listening to your story.
[00:45:07] Speaker C: Oh, that's great. I keep forgetting that this was being recorded. I was just chilling, chatting, you know, having a blast.
[00:45:13] Speaker A: That's the best way. I'm glad you felt comfortable with us to share and just be relaxed in the conversation.
[00:45:19] Speaker C: So, yeah, it was a blast. Thank you both so much for chatting with me.
[00:45:24] Speaker A: Well, everyone, thanks for listening. This was Narcolepsy Navigators. This was Curly, Liz, and Angela. And until next time, see you at the next story.
[00:45:35] Speaker C: Bye.
[00:45:35] Speaker B: Well, everyone, bye Bye, sleepy buddies.
[00:45:40] Speaker A: Views and opinions in these stories may not work for everyone. If anything you have heard is relatable, please see a doctor for advice.
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.
