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 NapsforLife. 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 NapsforLife, and welcome to our stories.
Hi, everyone. Welcome to Narcolepsy Navigators. Today we have Rachel Nesmith, also affectionately known as Sleepy American, and we will be talking about the topic, music and advocacy.
[00:00:59] Speaker A: Yep. Yep.
[00:01:00] Speaker B: So, Rachel, how are you doing?
[00:01:03] Speaker A: I'm doing good, thank you. I'm doing pretty good. How are you doing today, Curly?
[00:01:09] Speaker B: Yeah, I'm okay. Just a little infection in my throat, so my throat's a bit sore.
[00:01:15] Speaker A: I'm so sorry. Yeah, but you look very pretty. I like your braids.
[00:01:20] Speaker B: Oh, thank you.
[00:01:21] Speaker A: You're very comfy, too. Like it?
[00:01:24] Speaker B: Yeah.
[00:01:24] Speaker A: How's your birthday?
[00:01:26] Speaker B: Oh, yeah, my birthday was nice. Well, I celebrated all week, so that was.
[00:01:32] Speaker A: Yeah, I saw that cute picture of you as a little girl.
[00:01:36] Speaker B: Oh, yeah?
[00:01:37] Speaker A: Yeah. With your mom and your dad.
[00:01:40] Speaker B: Yeah, with my mom and my dad there.
[00:01:42] Speaker A: Your mom and your pop.
[00:01:44] Speaker B: Yeah, mom and pop.
[00:01:46] Speaker A: Awesome.
[00:01:48] Speaker B: So, Rachel, I just saw your interview.
[00:01:51] Speaker A: On Sleeping around with.
[00:01:54] Speaker B: Yes, sleeping around.
[00:01:57] Speaker A: Dr. Morse.
[00:01:58] Speaker B: Yeah, Dr. Morris. That was really good. That was really good.
[00:02:01] Speaker A: Oh, thank you. Yeah, I waited a long time. That was filmed in the middle of November, so I waited a long time. I finally got to see it with everyone else.
I was like, when is it coming out?
Well, yeah, it took a little while. They work really hard on making sure it's edited correctly, and it's a great job. I. I really love Dr. Morse, but I think everyone loves her, so. Yeah, my word.
Yeah.
[00:02:37] Speaker B: Good person. Can you tell the listeners a little bit about yourself? Like, where are you situated? What part of the world are you living in at the moment and how old you are, if you don't mind.
[00:02:49] Speaker A: I know.
[00:02:50] Speaker B: And also, what year were you diagnosed?
[00:02:55] Speaker A: Oh, no problem.
I always lived in where I was born. Dallas, Texas, United States.
And I graduated from high school from a small town called Duncanville, which is, like, just south of Dallas, and in 1999. So I am 43 years old. I was diagnosed at the age of 21 in 2002. February.
February 2nd, 2002 was the day I was. I had the MSLT that diagnosed me.
[00:03:36] Speaker B: I like that. You know, it down to the very day. I like that.
[00:03:39] Speaker A: Oh, yeah, you can't forget when you're waiting that long for.
Well, I mean, for me, it was a long time.
I onset it early on.
I onset it freshly on.
I started onsetting this June, July of 2000, I mean, of 2001. And then when 9, 11 happened, that's when I started having sleep paralysis with hypnagogic hallucinations almost all night, every night. And that's when it went beyond the sleep attacks into this horrible living nightmare. And by November, I was laughing and then crumbling to the ground. And I didn't. I mean, it was my. I didn't know what symptom that was, but I knew about sleep paralysis, but I didn't know what the crumbling was whenever I laughed or got angry or fought as sleepiness.
But when, when my grandmother, she's like, you know, Rachel, that sounds a lot like narcolepsy. You need to look it up. And I looked it up and I'm like, well, you're right, Grandma. That's what it is.
So, you know, you know. Now I believe my grandma must have had it a milder version because she did have some of the symptoms. But there's also the fact that I share.
I have the genes from that side of the family and I have a first cousin who's related to that side where the only blood we have in common is my grandmother's side.
So that. And I have both the genes. And my mother has a milder version of narcolepsy with cataplexy. She doesn't fall down, but she has experienced the cataplexy a lot. Ah, but, but, but she's not diagnosed.
I wish she would. She's diagnosed with, with, with, with. With sleep apnea. And she's treated for that. But the narcolepsy, she just tends to just live with it. But I, I cannot. I don't have that option. I can't leave the house without, like, I can't. It's not safe to feel emotion.
And my cousin, she prefers to remain anonymous.
I don't tell anybody about her identity specifically because I want to respect her privacy wishes, but she does exist and she's a great person and she's a hard worker. She's. We're a lot alike. We look alike and we have like, obviously the same narcolepsy genes.
But it is a disabling condition. And it doesn't just.
It can discriminate based on, like, your genetics, but in terms of, like, demographics, it doesn't matter. You can be any race or ethnicity and demographic and get narcolepsy.
I do find that cool about narcolepsy because like you and me, we're not from. Our ancestors are from different continents originally. Mine are mostly from Ireland and Scotland and uk.
From where you're at. I have a lot of Irish. I was part of that genocide, the potato faren and. But yeah, I like that about it. But yeah, that's my story.
[00:07:41] Speaker B: That's so cool.
It is interesting that. Yes. I like what you said about your cousin. We have to respect different people's where they are at in their journey. Maybe in the future it changes for them. But some people don't think it will. Yeah. Don't want to identify with it. Yeah.
[00:08:02] Speaker A: So she doesn't. It's something about a medical.
She, she, she, she doesn't mind that I'm public.
[00:08:10] Speaker B: Yes.
[00:08:10] Speaker A: It's a pet peeve of hers. Yeah. Openly talk about the medical. Yeah, but, but I'm like, well, that's the only way.
I mean I, I don't want to reveal any more about her. But, but, but yeah, she's actually older than me and she onset after me.
[00:08:31] Speaker B: Was it because of your diagnosis that helped her get diagnosed?
[00:08:34] Speaker A: I'm sure it helped. I don't know specifically because I want to respect her wishes and I never want to jeopardize that trust.
[00:08:45] Speaker B: Yes, of course. So you are also a mother and a wife.
[00:08:49] Speaker A: See. Yeah. Yeah. Here's my little girl.
Her name's Savannah.
Thank you. Yeah.
[00:08:59] Speaker B: She's very prissy.
[00:09:01] Speaker A: Oh, thank you.
She has autism and add.
She's having a lot of trouble in school lately and like in the past trying to keep her meds up at the right level and a lot of times.
But with narcolepsy I have a lot of help from my mother and my mother in law and my extended family that really helped me.
She has a great psychiatrist, Dr. Linda, who helps manage her meds. But it's with narcolepsy makes it extra challenging because I deal with a lot of discrimination like from her, her teachers and our Adams. They, they think that I'm, you know, for a long time they felt that I was just this drunk, negligent mother.
[00:10:06] Speaker B: Oh my gosh.
[00:10:07] Speaker A: But it was actually the narcolepsy. Yeah.
And I could tell them this.
And the day before World Narcolepsy Day, they actually had CPS come out and investigate me.
[00:10:22] Speaker B: Oh my God.
[00:10:23] Speaker A: Yeah. But it was unfounded.
But you can see how the narcolepsy complicates things when pretzel needs children. Yes. I love being A mother and loving her mother. I. I just wish she would not be inappropriate in school.
I really wish she wouldn't love to be a naughty girl. It makes them ask questions like, what are you doing to this child?
But that's part of autism is they don't really have a filter. Very good.
[00:10:58] Speaker B: Yes, exactly. And they should know that as the teachers. They should, you know, they really should. Yeah, they should educate themselves about this.
[00:11:06] Speaker A: Especially special ed teacher is the one that likes to report me. Oh.
[00:11:13] Speaker B: Oh, my goodness. You'd think that that would be the one that's on your side.
[00:11:19] Speaker A: Yeah. I mean, the teacher herself doesn't have any children and the special ed teacher has a baby or one year old.
So, I mean, I don't really. I don't know if they really understand autism that well, but yeah, that's what it's like being a mom in the system.
I can't understate how difficult it is to be a mother with narcolepsy. Then you add on those other variables. I mean, me and my sister and my nephew, we all have the high functioning autism with addiction. So it's very, very genetic. I didn't know that I had it until my sister and nephew and then my daughter, all my father all have it. Wow. And so it's like, like that's what was wrong with me. That's why it was so hard that I had to study for hours and hours to get A's and B's.
[00:12:24] Speaker B: Yeah.
[00:12:24] Speaker A: But for me, I was afraid to, to do anything to disappoint my elder. So I was like, different from my daughter and that I wanted to do everything perfectly.
[00:12:38] Speaker B: Yes.
[00:12:38] Speaker A: And I was hyper focused on. I would study for, like, it would take. I would do like all nighters trying to do my homework and study for a test because getting those grades were so important to me. At one point, my mom's like, I'm calling. I'm taking you to the police station. You won't go to bed.
I gotta do this, Mom.
Oh, bless them.
[00:13:05] Speaker B: I can relate to that. Like working really hard to get your grades. I can relate to that.
[00:13:10] Speaker A: Yeah.
[00:13:11] Speaker B: I used to get frustrated with the people who didn't have to study and they just turned up and they just got A's. They used to really bug me.
[00:13:22] Speaker A: It's not fair. No.
But it's a testament to our characters.
[00:13:27] Speaker B: Yes, definitely.
Does your daughter understand what narcolepsy is?
[00:13:40] Speaker A: Yes, she does.
She does understand it pretty well.
She, she, she's like interested. Like, she's like, are you on the Phone with your. Your sleep doctor or. She. She definitely understands the symptoms and the naps. She herself loves naps. Herself.
Very. She loves fluffy pillows and animals and she likes to take naps. So she's. I'm raising her to be very, very knowledgeable. That narc. Narcolepsy isn't. It's a character builder. And her mom isn't like a lazy, no good, do nothing loser on the couch.
Probably a superhero fighting. Fighting battles in my dreams.
[00:14:33] Speaker B: Yes.
[00:14:34] Speaker A: Yeah. Well, thank you. Yeah. This is awesome.
[00:14:37] Speaker B: So, Rachel, tell us about. I originally found you on Facebook. Yeah, on Facebook. And then. Then I heard about your songs and I found you on Spotify.
[00:14:51] Speaker A: And then later I've been friends since we've been meeting on naps for life.
[00:14:58] Speaker B: Yes, exactly.
[00:14:59] Speaker A: I tell you, first we were friends before I did music. I may have been barely starting in music, but also was this. Rising Voices of Narcolepsy.
[00:15:13] Speaker B: Yes.
Yeah.
[00:15:16] Speaker A: And Julie. Yes.
[00:15:18] Speaker B: And Julie Freika.
[00:15:20] Speaker A: So how.
[00:15:21] Speaker B: What made you wanted to use music as your voice for advocacy?
[00:15:27] Speaker A: It's because. Well, I've always loved music and the fact is that I have quite a story to tell, but it's a very complex story that has a lot more ups and downs. And like, it's not just like a simple. Like a simple memoir. It would be more like Homer and the Odyssey.
Yeah, there's. There's a lot of things. Like there's a. There's a head injury in there. There's some childhood abuse in there. There's.
Then the narcolepsy is just like the creme de la crop on top. And then there's a lot of ups and downs with the narcolepsy. Do you know about my crazy story on my journey on finding Dr. Morse and Mayo Clinic, which I won't go into specifically here that much because it's still kind of traumatic.
But I'm just so happy to have Dr. Morse and I have this community of support and I like to be treated in. At my A game because what I love to do is to support other people in narcolepsy that aren't diagnosed yet and they're still. Or the ones who are newly diagnosed or the ones who feel their loss. We just restarted my local support group called dfw. That's Dallas Fort Worth. Narcolepsy friends and the president. She lives like she lives not a mile away. She's very close. And we're both moms with narcolepsy. She has three adopted children.
Yeah, she didn't know she had narcolepsy till after she and her husband adopted the children. Okay. But it's just a testament to seeing how much character people in narcolepsy have. But the main reason why I wanted to get into music is that I've always loved music and that then again, when I know I could write a novel, but I can't stay awake to write the novel and I don't think people would enjoy it. So I also find a great joy in seeing it helps me feel calm, it helps me get, I mean it's where I get some of my dopamine from my endorphins.
And it's called Frisian, where you get this like, like it's one of your, your, your joys.
And the main reason why I like seeing is that the number one way to change, to help put stigma to bed and change public perception of narcolepsy, of anything that is stereotyped or misunderstood, is by changing the pop culture. And when you change the baseline perception of what it is, you have to have correct.
You have to have correct stereotypes and correct I want to say, say portrayals and conceptions of what the disorder actually is. So when you say like ahaha, it's fairy tale nap land, that's not going to cut it. You're going to have to describe, you're going to have to be explicit with your message narcolepsy with your lyrics that it's not fairytale nap land but like one of my lyrics is paralyzed by dreams. I'm thirsty for sleep, narcorect me narcolepsy1 laugh&splat& things like that really talk about the cataplexy, the sleep paralysis.
The.
One of my songs, I did a, a parody of the song the Cardi B Wap song and I called it Whack Ass Dreams and, and the, the opening lyrics go, I'm a certified freak when it comes to sleep. That's a narcolepsy makes your sleep cycle weak.
Yeah, I like that though too. And it gives you see how people are like already they're like I like that song. It's an. Is a controversial song. It's already got the attention. And then you find a way to creatively and with that you don't want to insult or lessen the.
The burden of having the disorder. You don't want to trivialize it from our experience.
So that's why it's important to me to provide a message that's not only getting attention and being entertaining to outside people, but also not tearing down on people with Narcolepsy to see how you laugh. Everybody, everybody can relate to that. That has narcolepsy. And it also helps get attention. And I do like being a support person and having relatable songs for people with narcolepsy. One of the best unexpected things I really have enjoyed is how many people that I've touched and gotten feedback from people who don't have narcolepsy or they think they have narcolepsy and they're like, I get that too. What is that? Or they'll be like, like they're like. When you said that you could hear things, you could hear everything but you couldn't say anything during like cataplexy or, or the, the sleep paralysis. Like I, I do a lot of songs about sleep paralysis and, and sleep paralysis demons and, and, and, and I like to do things like with Doja Cat when she did her whole thing, man, and I thought that was she. She did want to bring this, the controversy in because that's what grabbed everybody's attention. But to me one of the silver linings is that she brought, she brought awareness to sleep paralysis. Whether or not she intended to do that, she did it. And, and I, and I capitalize on that.
I do. But I try to have fun with it. It's therapeutic. It's one of the only things that really kept me alive and wanting to hold on to life while I went on for the period of last year, it was February 22nd of 2023 to the middle of June. I was greatly suffering. I was having like status cataplecticus multiple times a week. And that's because I wasn't on treatment and with the unfortunate experience I had with my former doctor. But doctor met on TikTok and a year before she ever became my doctor. And we were both narcolepsy advocates and we both were mothers. We've been married about the same time. And she was a sleep doctor and strong advocate and I was a sleep patient mother in law. And we became friends that way. And then what happened is that the unfortunate circumstance happened and as she watched me suffer and I really wanted her to be my doctor from the get go.
And I did tell her how I was going to the Mayo Clinic and when we all found out like heartbreakingly so that they would only re diagnose me and it cost like $19,000.
[00:24:01] Speaker B: Oh my goodness.
[00:24:03] Speaker A: Yes. And that's like out of my parents, my parents retirement fund for. I had to get a special ASV machine because I have complex. I didn't know That I had treatment emergent central sleep apnea on top of the obstructive sleep apnea, which for me.
[00:24:22] Speaker B: Yeah, I just about to ask you, explain to the listeners and myself what that means. I also have sleep apnea, but what's this extra. I have obstructive apnea. What's this extra sleep apnea that you got?
[00:24:35] Speaker A: Well, essentially I was on the CPAP, but what Dr. Sibler saw in my PS well my polysonography at Mayo Clinics, the first one is that that my, my oxygen took a nose dive while on the cpap. And essentially what happens when you have the central. The, the treatment emerging is that while the CPAP is. Is putting that positive airway pressure, the central part of the brain is like, hey, there's oxygen, there's airflow going here. She's breathing. You don't need to take a breath. So the brain actually forgets to take a breath or it's told to not breathe. So even though the air is being pushed down there, my, my. The central part of my brain is not not taking a breath. So that's dangerous. It is. So, so why the seductor Siblers like you have to get in ASV or else there's no way you will ever be able to safely be on psy way. There's no way you'll be able to. You know that you have to be able to resolve this. And the only way that he knew how to do this was through getting a special machine called an ASVAs BiPAP machine, which what it does is it, it, it, it, it. It helps to breathe in and breathe out.
It's. It, it works more with you than against you. So it's kind of like a symbiotic, gentler like, like it, it feels, it does. It doesn't feel like it's choking you. Yeah, yeah, it, yeah, it does help a lot.
Dr. Morphs is. She's extremely knowledgeable. She, she just recently told me how there are prescription drugs that can really help with it. And Dr. Sibler didn't know about that. I didn't know about that. But just a testament to Dr. Morse is probably going to. Yeah, she, she. If she's already known around the world, she's known. She's very active in narcolepsy. Ireland.
Oh yeah. Yeah. And all over. So she's. I would say I. All eyes. The world's eyes should be on Dr. Morse. I know mostly she doesn't treat adults. She mostly treats pediatric patients. But after she found out that Dr. Sibler and Mayo Clinic that they would only diagnose and consultative basis and that my former doctor refused to take me back. And I also did not want to go back.
So when she saw me like I messaged her and I was like, you know, crying and she's like, you know what? That's it. That's enough. Let's get you in here to my office. And I flew from Dallas. I went with my dad and I in the middle of June and we went to.
It's quite a. It's about a four hour flight to Scranton. Scranton is. Scranton, Philadelphia. And there's. And it's like in between.
It's like a ways away from. It's about a couple hours drive away from Philadelphia.
So in my airport, my. Well, the air, the air. The iu. The air, the air.
The airplane flight that I have to take, they don't have, they don't have a. They have Philadelphia and a Pittsburgh, but they don't have. You have to have a smaller Scranton airport to go there. So there's always like a.
I want to say a layover, but it's more than worth it to go.
[00:29:10] Speaker B: It was a long journey.
[00:29:13] Speaker A: Yes.
And it was awesome to be able to have Dr. Morris in my corner that she actually did work with my insurance and didn't charge very much at all, especially compared to what the Mayo Clinic charged. And my insurance, it was so out of state and everything. And it was a specialty. It was not just. It wasn't so much that it was out of state. That did make it complicated. But the main thing is that they're specialty hospital and they charge like, like, like at least 50, sometimes 66% more per than regular health care providers. And my Insurance only covered 10% and I have good health insurance in America. Wow.
So the Mayo Clinic. Yeah, I was pretty shocked. I didn't qualify for any aid and I had to pay it or they wouldn't stop calling me. So my parents, my parents emptied out their retirement savings so that I could have that treatment and not have, I mean, my credit ruined. Oh, wow.
[00:30:42] Speaker B: You have such wonderful parents.
[00:30:44] Speaker A: I do, I do.
[00:30:46] Speaker B: I'm so glad that you have that support from them because I know so many other people don't have that support. I'm so glad you have that support.
[00:30:54] Speaker A: Thank you. I mean, I wouldn't recommend living like I did for those months of.
[00:31:02] Speaker B: It was torture. I remember talking to you at that time and I just couldn't believe that anyone would leave someone to be in that state. It was criminal.
[00:31:11] Speaker A: It's criminal.
It Is what it is. I still am kind of afraid of that doctor.
That's why I don't really reveal too much publicly about him.
But I'm at peace now, and I thank God for him because he now had the best care in the world. Exactly. And now I'm doing better than I could have ever been on his care. I didn't know how bad my sleep apnea was.
I knew Dr. Morse, but at that time, she wasn't motivated enough to go. I want her as my patient.
But seeing what the journey as a patient, if you're a caring doctor, Human being, force. She was like, this is terrible. I have to do something.
[00:32:02] Speaker B: Yeah.
[00:32:02] Speaker A: She's like, why does he not want to talk to you?
And I mean, privately. I would have these discussions, but not publicly because of the things that he did. Mm.
[00:32:19] Speaker B: Well, I'm glad you're at peace now and you've bounced back.
[00:32:22] Speaker A: I'm really.
[00:32:23] Speaker B: I'm really happy about that.
[00:32:25] Speaker A: Oh, thank you. Because I. Probably what we should talk about is, like, the importance of advocacy.
[00:32:32] Speaker B: Yes, let's talk about that.
[00:32:37] Speaker A: Yeah. And I think you and I both want to rise more. More awareness about the disorder because of how many people that. That aren't diagnosed or don't know about the symptoms or don't realize how undiagnosed the disorder is. Like, in the United States alone, it's like 1 in 2000 people are suspected to have narcolepsy, but only 7. Only 25% are diagnosed. So that means. Wow. Like, for every 2000, there are only. There are 1500 people with narcolepsy that don't even know they have it.
[00:33:22] Speaker B: That's really bad.
[00:33:24] Speaker A: Yeah. And people like, in. Let's say you can see how the. You see, like in. With your. With your insurance system, the doctors are. The primary care physicians are motivated and they are interested in not just treating, say, like a virus or an infection or something that needs a surgery, and then it's okay or it's cholesterol only about 2% of all. Like, medical school. Like, there's only, like, two hours of medical school training on sleep for doctors getting their pre med.
And in medical school, they only get about. In medical school, they only get about 2 hours on sleep unless if they become specialists. But in order to get that interest, you have to educate medical students that why sleep is so cool and why it's underrepresented and that there is a market, there's a profit motive there.
[00:34:39] Speaker B: Yes.
[00:34:40] Speaker A: Because if you separate the profit loader from American health care, then there's no motivation, unfortunately.
Yeah, I know. Our healthcare system needs to major.
A lot of our systems in America need to be redone. Yes. But especially for someone like me that in order to go to what once was a nonprofit hospital, now is very much for profit. The Mayo Clinic, they. They make. They make a lot of money. And I mean, they do. They do get the job done, and they do their job very well. And they're good. Have excellent doctors that care about you, at least, like, in diagnosis.
But yeah, advocacy is so important in raising awareness and just trying to find ways to increase the interest in. Why should I care about sleep as a medical student? Why should I care about it as just a regular person that doesn't have a sleeping disorder? Vapor is now considered one of the major eight factors for maintaining a healthy heart health. Yes, I agree. And now it's like, when I first knew that I had narcolepsy, I could not get diagnosed right away. Why?
Because I would go to my doctor and I'd be like, hey, I'm pretty sure I have narcolepsy. Here are the symptoms. And they try to get me a sleep study. And then they be like, hey, your insurance completely excludes all sleeping disorders. Which means that the insurance that I was on in 2001, on my mom's, they did not cover sleep conditions at all.
[00:36:52] Speaker B: So they didn't think that that was an important part of health.
[00:36:56] Speaker A: They said their sleep conditions were. They were not medically necessary.
Yeah. And I said there was cellular death in the brain, but that's not, like, medically significant.
Wow. Because at that point, they knew Dr. Mignot's experiment or Dr. Mignot's findings had come out, that he found the cause of it. And I was like, hey, there's sailor death in the brain. I know. Without a shadow of a doubt. I was a psychology major, so I knew the difference between reading. Reading something in the DSM and going, hey, I have that disorder. I think. I don't know. But no, it was more of like, oh, my goodness, I'm after my grandmother. And going through everything I know without a shadow of a doubt. It's narcolepsy. Full tetrad, severe narcolepsy with cataplexy. And so I had to wait until I could be put onto my dad's health insurance as a college student and trying to go to college.
It was like my hardest semester of my life.
It was like I was in experimental psychology. I was running my own experiment on the effect of different genres of music on memory. So I Said I always had that, that deep interest in music and how it affected the brain. So during all that and having the automatic behaviors, like seeing all these scribbled notes, like what is like say like Britney Spears or something we are doing in my experimental psych notes. And it was that. Then it was that automatic behavior and I would have this. I started having to tape with a voice to cassette recorder all, all the lectures because my notes were all scribbled.
[00:38:58] Speaker B: Yes, I can, I can relate to that. Yes. And when I say this to people, it just shows our age as well. Because it's funny. They're like, what?
Yes, they did exist. It was a little tape. And you pressed it.
[00:39:10] Speaker A: Yes.
[00:39:11] Speaker B: You put it in front of the lecturer, then you picked it up at the end of the lecture and then you went home and then you played it back. And then you could write your notes properly.
[00:39:20] Speaker A: Yes, you could try to write your notes properly. But usually for me it would end up scribbled up.
[00:39:27] Speaker B: Yes, definitely.
[00:39:28] Speaker A: And that's part of why it took so long for me to study. Yeah. Keep my grades.
[00:39:34] Speaker B: Yeah. Because if you have to keep rewriting the notes.
[00:39:38] Speaker A: Yes.
[00:39:38] Speaker B: You have to keep rereading the text because you've forgotten what you read.
[00:39:43] Speaker A: Right.
[00:39:44] Speaker B: Read half of it. You remembered half. And then you fell asleep. So then you'd have to read it.
[00:39:48] Speaker A: Takes so much to put it into long term memory.
[00:39:51] Speaker B: Yeah.
[00:39:52] Speaker A: And then like switch. Right. You know, they told me I couldn't like after I was diagnosed.
They're like, well, your, your chronoplexy is so bad that you can't ethically become a, a psychologist or psychiatrist.
[00:40:10] Speaker B: Oh no.
[00:40:11] Speaker A: Because of the cataplexy and being with them, I wanted to go into clinical psychology, which means I'd work with like some, some oftentimes like potentially dangerous clients and, and like any kind of fear or anything like that would send me into catap Status cataplecticus, even for the first several years while on medications. And I still haven't been able to drive since like 2003. I get really bad cataplexy just from finding sleep attacks. Sleepiness. Yeah.
[00:40:49] Speaker B: So I never got to learn to drive because nobody's so sorry. Yeah. So they said I was a danger to myself and others.
That's what they sent me. So then I wasn't allowed to.
[00:41:02] Speaker A: I got the same thing. It's like.
And it is hard. I miss it. At least I got, you know, it was a long time ago that I drove, but hey, at least sometimes I can ride a golf cart or the Go kart or the shopping cart at the Walmart.
[00:41:26] Speaker B: Oh, you've tried the go kart.
[00:41:29] Speaker A: A long time ago, I did a go kart.
I could potentially do it now. You know, I do it to a. When I'm on my medication, I don't get the emotion. The emotion. Severe cataplexy, it's a lot.
A lot less severe. But when I'm like, have the excessive sleepiness or if I try to drive and I'm stopping at lights, that's where it gets right. It can be really, really serious.
[00:42:02] Speaker B: I used to do extreme team camp and they would have different activities like surfing and different things like that. And so I couldn't do those because, oh, no, I wasn't able to swim and stuff. But I decided one day that I was going to try the quad bike. Oh, yeah, I'm sure I can do that one. It's fine.
[00:42:24] Speaker A: And then as I was going round.
[00:42:27] Speaker B: I fell asleep for, like half a second and drove it into a tree and it fell and it just missed me by inches. It fell next to me instead of on top of me.
[00:42:38] Speaker A: Yeah, it's so hard.
People have no idea what it's like. They're like.
A lot of times they're like, oh, you know, a long time ago, they used to say, oh, so you can just fall asleep anywhere like that. It's not exactly like that.
I say, narcolepsy doesn't make you weaker and makes you stronger. Because I say narcolepsy, a lot of times, people will assume that, well, you should just be able to tough it out. You should be able to make yourself be awake. And I'm like, no, narcolepsy is more like, let's say you're driving your car around and the transmission blows out.
And unlike a car, we can't get the transmission part of our sleep center of our brain, where the hypocretins are in the lateral hypothalamus.
We can't get an overhaul and replace that engine or repair it.
So instead of getting that repair as patients, this, we're like, I'm like, imagine being told that you can't get a new car. You can't replace the engine, you can't repair it. So you're expected by society to keep on pushing your car uphill by yourself with your own legs, and you have to push over the hill, over, up the hill, over and over again.
And if you are not doing it fast enough or well enough, then that's when society's like, well, you're just being Lazy.
[00:44:20] Speaker B: Mm. That's a good analogy. Such a good analogy.
[00:44:24] Speaker A: That's how I do it in. I try to do it in lyrics. That's how I try to do it in real life. I call them, like, transformative analogies because they allow you a more realistic picture of what it's like, as you say.
[00:44:39] Speaker B: And, Rachel, this is the sort of stuff that I wish we were seeing in movies. This is the representation that they should be getting. And this is also one of the reasons why I really want to do the podcast that get everybody's story, different stories out there. Maybe someone in Hollywood will listen to these different stories and think, actually, next time I want to depict narcolepsy in a film, let me get in contact with someone who has narcolepsy. Let me talk to them. Let them tell their story the way that it's meant to be depicted on screen. Not something that we've made up in our heads that we think it should be. We think that is, like. Because you wouldn't do that for anything else.
[00:45:19] Speaker A: Oh, yeah. That's why I'm focusing on music and changing that part of the entertainment and representation. That's something that I can do and I have done.
[00:45:31] Speaker B: You're doing it well.
[00:45:32] Speaker A: And. And if one day I can do a music video someday, that would do. That would change the world for a lot of people in narcolepsy, because it would not be. It would not be something that people in narcolepsy would laugh at or anybody would laugh at.
[00:45:49] Speaker B: Yes.
[00:45:50] Speaker A: If I were to do a music video or any kind of video, it would accurately maintain the person with narcolepsy's dignity.
[00:46:01] Speaker B: Yes.
[00:46:03] Speaker A: And that's why I say, like, in my superhero character, Sleepy American, my superpower isn't sleep.
I call it my emperor, which is like a lightning bolt. That's what this lightning bolt is about. Oh, yeah. It's like I am able to touch someone and temporarily have them experience what I experience or what someone else experiences so that they can empathize. That's why I say it's emphasis, more of an emphasizes that noun, that action verb, of how you transfer one's experience to another. Empathize, making them empathize. And that's what my superpower is as a superhero. But in real life, it's the analogies that I use, the lyrics that I use, and I do feel that does make a difference, especially with my other music friends that will probably go, hey, I've been diagnosed with narcolepsy, too. That's a really good description. Or Other people in narcolepsy, it's like I don't feel alone anymore. Or people that don't have narcolepsy are like, I never really knew that narcolepsy was more than fairytale napland.
[00:47:25] Speaker B: Yeah.
[00:47:26] Speaker A: But another one of my analogies is, as I say, narcolepsy, real narcolepsy is more like Inception meets Nightmare on Elm street, not Fairy Tale Nap Land. Yes. Yeah. It's more like a psychological horror film.
[00:47:43] Speaker B: Yes. Yes.
[00:47:45] Speaker A: And that's why I say that's why I like to do what I do, because it not only makes me feel better as a. More like, a lot of times I feel like a complete worthless loser. I'm not driving. I'm not earning income.
I'm costing my family thousands of dollars.
And I'm not always, and especially without the treatment, I am like a worthless heap of flesh. A lot of times you're not, Rachel. Well, it feels that way. They love me, and it's enough for them to want to keep me alive and happy. And when I'm treated, I can do things like this, where I can talk to you. I can wear lipstick. I can look presentable. I can care about things like nails.
This is a shirt that.
This is a top from one of my. She used to be my caregiver from. She's from Ethiopia, so this is from Ethiopian traditional. Oh, nice. So. So, like, I can wear things like this and not be in a nightgown all the time.
And when I'm on my medication, and I think that. And also a thing that should be prescribed is things like this, like, where I'm talking to other people. Narcolepsy, what I like to do is not be the person that's like, I need help. 91 1, Dr. Morse. Anyone? Please help me get back on treatment. I like to be here where I'm on treatment and I'm okay, so that I can help other people that don't have it or feel lost.
[00:49:31] Speaker B: Yes.
[00:49:31] Speaker A: This is where I like to be with narcolepsy. Is that because I'm more useful to the world as a support than as a helpless patient?
[00:49:42] Speaker B: Yes. And that's why it's so important to have patient care properly and under control. Then you can give back to the world.
[00:49:52] Speaker A: And also, it's important for the world to know that our lives are worth it.
[00:49:59] Speaker B: Yes.
[00:50:00] Speaker A: That our lives are not worthless because of narcolepsy, but actually are more precious. And we are not disabled. We are disinvincible. We are superheroes dealing with all of these Obstacles and still being determined to succeed and be a leader. That's admirable. Not something to look down upon.
[00:50:27] Speaker B: Yeah, you said it so well.
[00:50:30] Speaker A: That's so true. Thank you. I really appreciate you and look up to you, Curly. You do a great job.
[00:50:36] Speaker B: Oh, thank you.
[00:50:38] Speaker A: Everything you do. And you're. You're a great daughter and sister and friend and. And, you know, I. I feel like, you know, that's. That's where my heritage is from, across the pond.
That's where all my. My relatives came from.
Yeah. I mean, yeah, there's a lot of Scottish, Irish, and some British and Welsh in there.
A little bit of French.
But there's a.
The reason why I chose Sleepy American is because I wanted to be that superhero.
And I had been your sleepy Avon lady for a long time.
[00:51:19] Speaker B: Oh, you did Avon as well.
[00:51:22] Speaker A: You did?
[00:51:22] Speaker B: Yeah, I was Avon lady.
[00:51:25] Speaker A: That was your sleepy Avon lady. And my Sarah was like, 2007, I won, like, the Albie Award. Oh, wow.
Yeah. But you see, what happened was, is that my ex husband decided in 2009, he just, like, two weeks from eviction, he abandoned me. Oh, my goodness.
And I couldn't drive, so I could no longer be an Avon lady. So that night when he just, like, just, like, dropped it on me, suddenly I. I thought we were okay. But apparently he had been planning this to throw me under the bus for months and months. Oh, my. And he did that. I. I was, like, crossing. I went on Twitter and I was like, hey. I announced my divorce, and that's when I decided to change my username to Sleepy American, because I knew I couldn't be sleepy Avon lady anymore.
So the.
What American isn't sleepy with how much they. Our work ethic is like work, work, work until you're, like, dead, dead tired. Sometimes literally dead.
But it.
That's how the sleepy American came into existence. And I've always like, sleepy is just part of me. But it's a big part.
It's a big part of just where I got to. Now. I think this is a cool toy that I got in Vegas that I like because it really shows what cataplexy is like.
[00:53:15] Speaker B: Oh, yes.
[00:53:16] Speaker A: That's so cool. Like, the partial, like, up, then you're down.
But it's from. I like to go to interactive art exhibits. This is from the one in Las Vegas, the Meow Wolf. Or this one was at the Omega Mart in Las Vegas. So I like to do things like interactive art exhibits. They're kind of trippy. Sometimes they just like. Like my daughter Likes to go to those type things, and they're kind of like your dream world sometimes, but. But, yeah, I like things like that because those analogies, because it shows you real quick, Monarch, what cataplexy is like, what it looks like. Also, like the puppets of cutting the strings.
[00:54:09] Speaker B: Yes. And then as they fall. Yeah.
[00:54:13] Speaker A: But also like the pomegranate story where my dad was like, I was in status cataplecticus, and my dad's like, hey, Rachel, I don't think you can hear me, but if you can, the secret word is pomegranate.
And 30 minutes later, Dan, the secret word is forbidden food. And then aplexy again. And I just like that story because it demonstrates that I really can hear.
Yes, absolutely. And that's my favorite story. And the first time I told it was at the 2006 Narcolepsy Network conference in my hometown of Dallas. And this is my first experience of ever meeting anyone in person with narcolepsy. But this is like an imperfect improv.
Improv session. And it was just crazy because I saw, like, 20. 20 people. 20 people with narcolepsy having cataplexy with 20 other narcoleptics trying to hold them up.
[00:55:28] Speaker B: Oh, my gosh.
[00:55:29] Speaker A: Wow. My first experience ever telling that story, like, in person.
[00:55:34] Speaker B: Wow, that must have been quite a memory.
[00:55:38] Speaker A: Oh, it was. I mean, I went. I didn't go back to the Narcolepsy Network conference until 2011 in Las Vegas, but when I did, a lot of the leadership was like, oh, you're the pomegranate girl. Look, it's the pomegranate girl.
[00:55:58] Speaker B: So there.
[00:56:00] Speaker A: Remembered you.
Yeah. And that, like, the.
And then, like, my friends from. In 2016, I went and decided that I dressed up in full costume, a sleepy American hero. Oh, cool. And. And my friends from. From the Narcoleps, the.
The African Narcolepsy Society, or they. They're like, oh, look, you sleepy American.
Like, like. And the global community, the international community is like, there's the sleepy American.
And my music friends just call me sleepy.
But, yeah, I think it's. You know, I really, really, really think it's great what you're doing. You have a great podcast, and you have a great. You have a great work ethic, and you're working very hard on raising awareness, and you are making a huge difference in lives.
[00:57:01] Speaker B: Thank you, darling.
[00:57:02] Speaker A: And giving people, like, giving me a platform to share with you and raise awareness, and that's so important.
[00:57:11] Speaker B: Yeah. I want that little girl or little boy in some village Far away. To eventually hear our stories and think, oh, my God. Yes, I relate to that. Yeah.
[00:57:23] Speaker A: Hopefully they'll be like, I think that's what I have.
[00:57:26] Speaker B: Yeah.
And they won't have to suffer as long.
[00:57:30] Speaker A: Or if they do have it, they're like, well, maybe I can be a superhero too.
[00:57:37] Speaker B: Exactly.
[00:57:37] Speaker A: Yeah. And you are.
I mean, a lot of times I think you and I both, we all fight that feeling of worthlessness and I don't think it's addressed enough. Yes.
[00:57:52] Speaker B: No, you're right. That's why. That's why I keep pushing myself, because if I'm not achieving, I feel worthless.
[00:58:00] Speaker A: Right.
[00:58:01] Speaker B: So I have to keep doing stuff. And, yeah, I. When I started Natural Life, I felt like it was like God calling me to do something. Like it was, you know, it happened through the pandemic and every. Everyone was in and they want to check on everyone to see how they. That's how it started with. With. With NarcOps UK. And then when they.
[00:58:25] Speaker A: Absolutely.
[00:58:26] Speaker B: When they stopped doing it and I met Iris, she was like, we can start our own one. And I was like, yeah, I don't think this is possible. She's like, yes. And then when we did, I just said, yes, this was. And we met so many people from so many walks of life and. Oh, yeah, it really helped me. And it was like therapy. Oh, yeah. For me.
[00:58:46] Speaker A: Oh, it helps me. Yeah. And like, even though you're. You and I are across the pond, I mean, you're not the only. Only person in the UK that's a good friend of mine. I also have a musician, producer friend and he's over in the UK and he's also a big support. So, like, we can be on different continents, but we can be, like, right there in the room with each other.
[00:59:14] Speaker B: Yes.
[00:59:16] Speaker A: And that's very important. And one day we will meet.
[00:59:19] Speaker B: Yes, one day we will meet.
[00:59:21] Speaker A: One day I will be able to go see my homeland.
[00:59:25] Speaker B: Yes.
[00:59:26] Speaker A: I really would love to go to a pub in Dublin and go see Stonehenge. Oh, yeah. Oh, yeah. Yeah. And it would be nice if I could meet William Catherine. That would be great.
[00:59:43] Speaker B: So, Rachel, if you could press a red button and by pressing the red button, narcolepsy would go away. Would you press it? And why?
[00:59:54] Speaker A: I don't think I would press it because it's my canon event, it's my identity now. And I don't think my character. I don't think I would be nearly as humble as a person or as strong of an advocate or leader without it. And if it wasn't meant to be. Then I don't. If God didn't think I was strong enough to handle it, it wouldn't have happened. And to think of the lives that I can touch. And I'm often reminded of, like in the Bible, where the blind man was at the point I could really see who Jesus was.
And I'm essentially, all of the naysayers were saying, well, why is he blind? Why is he disabled? Is it something that he did or did he sin or his parents sin? And Jesus response was like, no. You know, people have impairments and disabilities. Because to help demonstrate how much I love, like, the love that God has for people, all people, and the humility and the inner goodness, that is actually a sign of love from God, not a curse or a damnation. Yes. Amen. It's important to know that it shouldn't be stigmatized, but more like, essentially you're using all of your workers to prop you up.
I mean, you at least owe them the thanks for that. But when.
When your workers themselves have to be on public benefits because you're paying them minimum wage, then that doesn't seem right in order. I mean, I've been on the absolute worst insurance, and I've been on better insurance. I just want everybody to know you're not alone. And, yeah, I would appreciate if. If. If everyone would check out my music. I'm on Sleepy American is my username and also the nap cape on. On Instagram.
My website where all my links are is. Is the link tree.com Rachel Nessmith, and that has all of my links and all of my podcast episodes.
And I just want everybody to know how everybody is a superhero in their own right, especially if you're also a Sleepy Peep or a sleepy. Yeah, that's what I call my Sleepy Peeps. Yeah, that's. Wow. Yeah. But. But yeah.
Yeah. I just think you're doing a great job, Curly, and I love you.
[01:03:05] Speaker B: I love you, too.
[01:03:06] Speaker A: And you're doing a bam on my sleepy hearts. And. Yeah. Across the pond. And how do y'all. I'm from Texas.
The British really like Texans. So then we like the British. Yeah. And Aussies, too. Y'all are awesome.
[01:03:26] Speaker B: Well, thank you everyone for listening, for tuning in today at Narcolepsy Navigators. I want to thank Rachel for coming on and sharing her story and about the importance of music and how music can be used to share advocacy in a really big way. And we will see you next time when you know about another person's story. So bye. From Rachel and myself. Bye.
[01:03:53] Speaker A: Bye, Curly. Thank you so much.
[01:03:57] Speaker B: Hi, everyone. Welcome to Narcolepsy Navigators. I'm Curly, your host. I want to thank everyone for listening to season one of Narcolepsy Navigators. January to September. Now, I always like to refer to idiopathic hypersomnia as narcolepsies Sister. If we use this analogy, then narcolepsy also has a brother. His name is Klein Levin.
So it turns out that the focus of the podcast at the beginning was supposed to be for narcolepsy. And ih, I didn't realize at the time that I was missing out. Another sleeping disorder that falls into the same category as narcolepsy type 1, narcolepsy type 2 to an idiopathic hypersomnia. This sleeping disorder is called Kine Nevin. So all four disorders are a part of the central disorder of hypersomnias. This is what the podcast will be focusing on. Although the podcast is named Narcolepsy Navigators, we are here to tell the stories of people who have narcolepsy type 1, narcolepsy type 2, idiopathic hypersomnia, and Kleine Levin. If you're out there and you have any of these disorders, please contact us so we can share your story.
