Episode Transcript
00:10 - Kerly (Host)
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 Kerry Boger, the founder of Naps for Life Narcolepsy, and welcome to our stories. Hi everyone, this is Narcolepsy Navigators. I am Kelly Yeohos, I have narcolepsy type 1, and today we're here with Dawn Super, and the topic for today is social isolation and mental health. So, hi, dawn, how are you? Hi, I'm great Thanks for having me. You're welcome. So, dawn, introduce yourself your name, what state you're residing in and what year you were diagnosed.
01:08 - Dawn (Guest)
My name is Dawn Zipper, I'm in sunny Southern California and I wasn't diagnosed until 22. I started symptoms at 11.
01:18 - Kerly (Host)
Wow, that's a long journey no-transcript.
01:50 - Dawn (Guest)
who's going to help me with that? A shrink right. So I'm going to go to a psychiatrist and I think I started with the psychologist and the first visit I was telling him I don't understand. It's so strange, like after lunch I fall asleep on my desk, but I'm not really sleeping because I can still hear everything everyone is saying. And he was fascinated with me. He said you have narcolepsy and I've never met anyone with narcolepsy and I know you have this and yeah. So it worked out great because I got the answer that I needed. And then I ended up getting diagnosed in a teaching university sleep disorder center at the University of Buffalo. And boy were they fascinated with me.
02:36
It was really the only time I've ever felt like I had a doctor house around. You know, they really they took the time to explain in their way. Okay, so I was 22, so it was 1982, so we're going back a long time. And they explained it to me like there's a soft ball of wakefulness in my brain and when I wake up it gets thrown, but so far before it drops to the ground again. That's the way they explained it to me. Movement disorders I have two movement disorders Overnight. Polly was six hours, they explained. I just I wasn't getting sleep really because I kept getting yanked in and out of the REM cycles.
03:17
And that was making me, you know, super tired. All the time they explained to me what hypnagogic hallucinations were and sleep paralysis and cataplexy. It was interesting because nobody really believed me that there was anything wrong with me. My sister picked me up from my appointment and left me sleeping in the car while they went to the zoo.
03:39 - Kerly (Host)
So when the doctor said to you, adenoclopsy, had you heard of it before? No, no. So you were also surprised, like when he said it yeah, I mean the internet wasn't around yeah and I was a massive bookworm.
03:54 - Dawn (Guest)
I mean, I read the encyclopedia for fun, but never connected.
03:58 - Kerly (Host)
Never heard the word never connected no one ever said sleep disorder like I didn't even know there was such a thing. Yeah, it's the same with me, and even though mine happened so much later because this is 1982 and I wasn't born then, I wasn't born until the year after that, and then mine didn't happen until 2001. There was just the internet coming up then and Google didn't even exist.
04:22 - Dawn (Guest)
So yeah, how do you know yeah, how would you know, yeah, how?
04:25 - Kerly (Host)
would you know?
04:27 - Dawn (Guest)
Exactly Precedent. Being young, I was in a really small town. I mean, I went to a tiny little school. There were only 14 kids in my class and none of them liked me. Nobody did anything about it. And then my parents were divorced and lived on the opposite sides of the country. So I had difficulty making friends. I didn't have good social skills at all because you know, small town, where do you learn? You learn from the television or books. That's it. If you don't have anybody teaching you anything you don't learn.
04:56 - Kerly (Host)
Do you have any siblings? I really think.
04:58 - Dawn (Guest)
I have a five years older sister and a year and a half younger sister, and they didn't have trouble making friends. It was just the middle child syndrome, who knows? Yeah, I mean, I could tell you now the things that kept me from having friendships when I was a child. But more than anything, it was a lack of appropriate parental supervision. More than anything, my parents were divorced. My mom worked three jobs. I did not have a mentor. I did not have anyone to look up to. I didn't have anyone to hold my hand and tell me I was special and you need that. Oh yeah, I went without it for a very long time and I went without it until I learned how to give it to myself and I actually healed all of the pain from what I went through as a child by raising my own children. I gave them what little little Dawn would have wanted, and so I was able to complete that, you know.
06:01 - Kerly (Host)
That's really. That's really healthy and nice, because it could have gone the opposite way. Because you were. You were so lacking in it. You could have been repeating the same thing that happened to you. So kudos to you for splitting the situation around and changing that story.
06:20 - Dawn (Guest)
Thank you. Thank you, my grandfather. I have abuse on my father's side of the family going way back, but even though my grandfather wasn't a very good person, he did say one very powerful thing to me. I'm going to try not to get emotional about it.
06:37 - Kerly (Host)
Oh, he said let this sickness end with you. Oh wow, he didn't mean my nerve.
06:47 - Dawn (Guest)
He didn't mean my pain in disorders. It was a nice pause. That was the universe giving me a pause to compose myself. What it meant was to leave the sickness of toxic family environment.
07:02
That even though everything that came before me was not healthy. I have the opportunity to have everything that comes in front of me be healthy, and I decided really to make that choice, and it is a choice. We don't feel like it is. We feel powerless to our emotions, but if we slow down and we hold our hands and we be there for ourselves, we we can't get through anything. It's not fun, but it's a lot easier to get through things if you're holding your hand and patting your back and hugging yourself than it is if you're god. Why you suck so bad? Why is this? You know? Why can't you get this together? Why can't you?
07:45 - Kerly (Host)
you know what I mean like yeah, that's true, gotta encourage yourself that negative mindset. That's no, I totally agree with that. I can see that I never really thought about it as hugging yourself or patting yourself on the back, but I can see that, like I recently went back to school and um didn't jump doing hairdressing at the moment and last year I did barbering Everyone was saying, oh Kelly, you can't do barbering, you're not going to hurt people, you're going to fall asleep.
08:14 - Dawn (Guest)
That's so sad.
08:16 - Kerly (Host)
And I was like well, you know, I'll apply, and if they say it was too dangerous, then fine, I applied and that's that. But they let me in the course, and I'm one of those people once you've let me in, that's it. It's like now, like if you then decide that, oh, it's a problem or it, nope, it's too late. I already told you everything up front.
08:35 - Dawn (Guest)
And now we'd have to let me show you.
08:38 - Kerly (Host)
Yeah, and both my parents were like it was so much better than me being at home, Even though it's so difficult in the morning, you know sleep inertia and everything getting up and my sister trying to wake me and ringing me hundreds of times to get up. It's miserable and whatever, and I'm miserable and whatever.
09:07
But once I'm there and they saw the progress in the months of just my whole being and my personality was different and, like the old Kelly, that they knew that before the diagnosis being glimpse of that throughout the space and it's literally simply because I was around other people.
09:22 - Dawn (Guest)
Such an interaction.
09:23 - Kerly (Host)
Yeah, working at home and being by myself at home, easy to get depressed, easy to think oh, everybody else is accomplishing things. You know, you hear, all these people are doing their masters, all these people are doing this. And then you start saying to yourself oh, what are you doing, what are you accomplishing? And all those negative thoughts start to really take over.
09:42 - Dawn (Guest)
Yeah, they do, they really do and it takes. There's a thing called the locus of control and you have to have. If you're going to work from home, you have to have a very strong internal locus of control because you're in charge, so you have to make yourself do the things that you need to do. You're never going to succeed working at home and, truthfully, when you have chronic illness, if you don't have an internal locus of control, you're automatically going to suffer. If you pin all of your good feelings outside of yourself and you're socially isolated, where are you going to get your good feelings? If you get all your good feelings from people being proud of you and you don't have the internal strength to do anything that anyone will tell you they're proud of you for, how are you ever going to feel proud of yourself?
10:41 - Kerly (Host)
That's so true. I never thought of it in that way.
10:47 - Dawn (Guest)
You have to learn that nothing is intrinsic. You're not born with any of these skills confidence, self-esteem, trust none of them. You're not born with any of them. You have to teach yourself boundaries and how to be a friend. I didn't know how to be a friend. For 35 years I didn't have any friends. I talked too much, I revealed too much, I was crude. When I was a little kid, I lied all the time trying to make friends. I've tried to buy friends. I just I didn't understand friendship at all on any level, and it wasn't until I realized that I wasn't being my own friend. That voice inside my head that said all those people who were mean to me were right.
11:34 - Kerly (Host)
Sorry, dawn. Did you feel when you were trying to make friends that you were not being yourself? You felt like you had to be a different person.
11:43 - Dawn (Guest)
I think it was honestly I didn't know what to do. I mean, I'm kind of on the border of autistic, like I took the test, I'm kind of close to the numbers and both of my sons tested like one is totally autistic and the other one is sort of autistic and they always used to say I dance on the line of autism because I have a lot of weird things about me. But truthfully, it was like I didn't know what to do, so I tried everything at the same time. Oh, you know what I mean. Yeah, yeah, I could see. Now, looking back, I could see it all clearly now, you know. But no one ever sits you down and says, hey, you're annoying, you need to work on her.
12:28 - Kerly (Host)
Oh, yeah, my sisters tell me all the time.
12:31 - Dawn (Guest)
Oh, they do so then you have to.
12:36 - Kerly (Host)
Although I find it very easy to make friends in the yeah, I'd say in my teenage years and from as a child, I yeah, I haven't ever felt like I had to try to make friends. I just sort of turn up to places and people tend to gravitate towards me.
12:51 - Dawn (Guest)
That's nice. I am in his way now.
12:54 - Kerly (Host)
Yeah, and I just talk and people either like me or they don't like me, or whatever. I just, you know, I just talk, I just I'm very myself all the time. So whether I'm at church, or I'm at church.
13:06
I'm just the same person. So at church people used to say, when you were saying that, people say you're crude or you talk too much. That's something I'm used to hearing. When I was at church I didn't feel that I needed to talk less or to be more PC because I was at church. I was like no, I'm going to be this person at church, this person out, not at church.
13:24
So then, when someone at church, I was like no, I'm going to be this person at church, this person not at church. So then when someone at church sees me coming from school down the road, they're not shocked because of my behavior, because they're like that's how Kelly behaves in church, just the same. They shouldn't be like oh my gosh, that's Mrs Bogg's daughter, she's behaving so badly. No, because I'm behaving the same everywhere. And that is Now. I find it a bit harder. I think now, as I'm getting older, I still, when I go to places, people tend to talk to me and that's not a problem, but I find that I'm sitting back, more sort of observing more than sort of getting involved. That's age.
14:02 - Dawn (Guest)
Age and wisdom. Yeah, that's good. That's what you want. It's called discernment. You know You're discerning what conversations you want to be part of, more than you know what I mean.
14:15 - Kerly (Host)
You're observing people.
14:17 - Dawn (Guest)
Yeah, when I became a student, of people rather than characters on television thing really started to change for me. I have a writing partner and she explains to me that when they make TV and movies that every character has to have a fatal flaw. Every character has to like, especially the bad characters like they have to make you really hate them and they write the characters so that you will feel certain emotions toward that character. So kids are watching these shows and emulating the behaviors of the characters on television that are written to be bad people. So you don't, if you think about it, have you ever watched a movie where someone was happy in the beginning and everything went great and it was just a happy love story from beginning to end? There's no such thing.
15:11 - Kerly (Host)
Yeah, it's always got waves.
15:13 - Dawn (Guest)
It was always a problem, always a problem. And so a lot of people end up with highlight reel syndrome. You know, like a lot of people who follow me on social media end up with highly real syndrome. They look at me in my videos and my clips and here and they think I don't have narcolepsy, because they don't see me wiped out. You know, I still. I mean, I've had insomnia since 2020, 2020, and it's been brutal.
15:41 - Kerly (Host)
Oh yes, that's a real one, so I can't.
15:45 - Dawn (Guest)
I can't tell you one good thing. I will honestly say it was a really good thing what happened with covid for people who are chronically ill, because the world went from communicating all in person to everyone being forced to communicate electronically for over a year yes so it conditioned them a little bit, you know yeah it was such a blessing. I really did enjoy that yeah, it gave us an opportunity to socialize in ways that you know we we couldn't before. Yeah, and it deepened our connections with people electronically yeah, definitely.
16:24 - Kerly (Host)
and then I found that because of that before, if you would say to someone, oh, let's jump on a video call, they'd say, no, I don't have time for this, or I can't, or I don't like video calls and stuff like that. But then after COVID, if anyone tried to say that with me, I was like, well, yes, you can come in for work and you can do it, you have exactly.
16:52 - Dawn (Guest)
I like to encourage people who are lonely to, you know, participate in online relationships to ease some of that loneliness. And my my narcolepsy group is different from the others because of my past. I have a lot of empathy anxiety, so when I read about someone's sadness, I feel the sadness and so, even though I don't begrudge the groups, I think they're amazing. You know, I use them to go in and ask questions or whatnot, but when I'm scrolling through the group and it's 90%, this sucks. I can't handle it. I want to die. You know, that kind of stuff, I can't sit in that. So that's when I created the Positively Narcolepsy group and it's kind of like a cocktail party where everyone just happens to have narcolepsy so we can relate to each other on every level, but it's all really just for socializing.
17:50 - Kerly (Host)
And.
17:50 - Dawn (Guest)
I've had a lot of people tell me it's the only place they even go to on Facebook, so it's definitely needed.
17:57 - Kerly (Host)
Yeah, no, I'm really glad that there is something out there where it puts a positive spin on it. I agree with what you said. I have a friend who's in Portugal. She's Portuguese and golden and she has narcolepsy and sometimes people say, oh, when you see her TikToks and stuff, she's always like made up and she always looks really nice.
18:15
She doesn't look like she has narcolepsy. But I am, I'm with her on the phone or whatever. When she's called me late at night, when she's had a really bad vivid dream or a really bad nightmare or she's having a bad day, no, she still has it. But the person that she's putting forward, that is the positive person that she wants people to see, and I don't think there's anything wrong with that. That doesn't mean that she's not struggling right.
18:40 - Dawn (Guest)
Yeah, I put out some things now and again. I have a video on my youtube channel. When you get to the bottom, don't forget to look up, because sleep deprivation leads to suicidal ideation Not always, but it can and so that holding your hand thing through the hard mental stuff I want anybody who's listening to this to understand that toxic positivity is only valid if you feel discounted, if you feel dismissed. That's what makes positivity toxic. So if my next door neighbor says to me, ah, it could be worse, I'm being dismissed. If you say to me, oh, I'm glad it's not not worse than it is, that doesn't hurt my feelings at all.
19:34 - Kerly (Host)
Yeah, that's true, because you understand, you have total empathy for me, yeah, yeah.
19:38 - Dawn (Guest)
So please, anyone who's listening, just remember encouraging yourself can never be toxic. Please believe that. Don't ever let anybody tell you it's toxic for you to encourage yourself, definitely, definitely toxic for you to encourage yourself?
20:00 - Kerly (Host)
Definitely so, Dawn. Do you feel that narcolepsy has affected you socially?
20:05 - Dawn (Guest)
I have a small friend group in person. I have a wide friend group electronically, but I have a small friend group in person. I'm in a relationship with someone who is very respectful of my limitations and gives me the opportunity to participate in things I wouldn't normally, because I know he'll have my back if I go south. Back if I go south. It's huge. I've never really had that before and I'm 54 now. So having the right mix of everything empathy, encouragement it's huge. It's worth waiting for.
20:47 - Kerly (Host)
So you hear that everyone, all of those, myself included, who are still single, you know, knockups is ruining your chances of finding the right partner. Dawn is proof that still holds.
20:59 - Dawn (Guest)
Yeah, it's super important to be independent when you have narcolepsy. If you're independent and you exercise your independence when someone comes into your life, they sharing your independence right. So they're independent, you're independent and you're just sharing your life with each other. I made you for back rubs, not for you know.
21:24
Yeah yes right yeah, that makes a lot yeah yeah, a lot of us define ourselves by our narcolepsy and I would encourage everyone not to do that. It's hard and it sucks and every day has new challenges, but don't let narcolepsy stand in front of what there is to experience being a human being yeah, it's true, there has to be more to your life and you have to give yourself the permission to live it and to try.
22:02
Permission is a great word. When my first marriage ended, I was having a very difficult time. I was at rock bottom and I tried to go on Xyrem and I almost died and it was a horrible infection and ended up activating Sjogren's syndrome and I couldn't get any lower than I was seriously Like I didn't shower for 18 days. It was. I wanted to die. It was bad and when I Phoenixed myself out of the ashes I decided to put myself back together differently and I left behind the pain of my past and who I used to be and looked at the friends that I had made and used them as my mentors. I actually have a couple that's only a couple years older than me and I call them my fake mom and dad. They've been married for jeez 30 years and still have a great sex life and run a business together and ride motorcycles together and deeply in love and respect.
23:17
And so, instead of all the other BS, I had to look at my whole life. I looked at them and how did they talk to each other and how did they treat each other and what's important to them and their relationship, and where do my values meet that and who do I want to be?
23:33
You know, do I want to be someone people can confide in and I'll hold their confidence, or do I want to be a blabbermouth, using gossip as a way to deepen other friendships? And authenticity is a hard thing to come by, but when you get there, the view is really good. Yeah, get there. The view's really good when you can love yourself enough to say this is me, this is who I am, this is how I came, this is how I roll, this is what I believe in. You dig?
24:04
Yeah, and if they do they do, and if they don't, they're not right for you and it is working to get to that place.
24:12 - Kerly (Host)
It's a really valuable place to be.
24:14 - Dawn (Guest)
Yeah it is. I want to that place. It's a really valuable place to be. Yeah it is. I want to plug. I've been involved with this business called the State of Mind Academy and I did a class through them. Three truths about thriving despite chronic illness. And the first one is that no two people are the same. And the second one is that just because someone else can do something doesn't mean you can. And the third one is you can do more than you think you can, but you won't know unless you try.
24:44
Those are so helpful.
24:45 - Kerly (Host)
Say them again, Dawn.
24:48 - Dawn (Guest)
No, two people are the same right Like me and you. We both have narcolepsy. We're not the same, we're different. We have different skills. I can't cut hair. I cut my kids' hair. It looks silly, but they let me do it anyway.
25:00
You know different skills, different knowledge, and the second thing is that nobody else gets to decide what you can and can't do. You have to decide that. So if this iron works great for you and it almost killed me, that's okay, because that's the way life works. And accepting that, you know, is a big deal accepting your true limitations, not not your self perceived limitations, because you always want to be pushing can I do more?
25:28
can I do more? And if you can't, accepting that, taking that nap, if you need that nap, you've got to give in. You know and treat yourself right and the that taking that nap.
25:35
if you need that nap, you've got to give in, you know and treat yourself right. And the third thing is that you know you can do more than you think you can. I never knew I could get to this place, where I'm full of peace and happiness and I'm managing everything and my stress levels are lower and my symptoms are better than they've been in my entire life.
25:52
Wow, it's all mindset, all mindset, like they life. Wow, it's all mindset, all mindset. It like they say it's in your head. I'll tell you one thing that helps me so much is remembering that ease is what you always want to go for, the law of least effort. You want everything to be easy, because when you're at dis ease, you're inviting disease.
26:18 - Kerly (Host)
Ooh, that's deep Dawn.
26:21 - Dawn (Guest)
I didn't write it, but it hit me hard and it stuck with me. It's deep. So each time I get myself into a pickle I'm like okay, wait, wait, wait, wait, wait, wait, wait. If we want to get through this, we should be calm. So let's not get mad. Let's use these emotions to figure out what we can do about what's been presented to us.
26:43
That's got our emotions upset, but let's not take it inside and I made a sticker with that. It says feel your feels, but keep your feet out of the fire. You don't need to suffer to fill your emotions. That's not why they're there In real future. I thought that is. It's a different perspective than you'll hear when people talk about chronic illness. I like to treat my narcolepsy as a component of dawn. Like my eyes are really dry from Sjogren's so I have to wear sunglasses when I'm driving. It's just the thing. I have about four to six hours of good brain power before I got to take a nap.
27:30 - Kerly (Host)
It's just the thing, or before, I got to take a nap.
27:33 - Dawn (Guest)
It's just a thing, and instead of trying to fight it, to fight the nap where you make everything worse, you just take it yes exactly.
27:42 - Kerly (Host)
I think this is what newbies find very difficult to comprehend and I see this on the forums a lot and I have to say the best thing you can do for narcolepsy, as someone who is newly diagnosed, is to go through your grief and start accepting it and listen to your body, because the sooner you accept it and you grieve, the easier it gets, the more you want to fight it and to hold on to your past, especially if you've got it when you are older and you have this other wonderful life that you think you live, and now this disease has come in to take over and ruin the life yeah no, you're going to be miserable.
28:26
You're going to be stressed. The more stressed you are, the worse your symptoms are, and it's just a cycle when you let go and you just give it over. Listen to your body. When you need to have that nap, take that nap. It just makes things so much easier.
28:40 - Dawn (Guest)
And also the mental stuff. You need to look at the mental stuff as counter to success. So, just like if you're looking at the difference between eating a greasy cheeseburger and eating a salad, and you know one of them's going to put you to sleep and the other one's going to help you stay awake a little bit longer, so make the good choice with food. You have to do the same thing with your thoughts. So if you screw up at work and you're driving home from work and on one hand, you're like God, I'm such an idiot I can't believe I did that stupid thing, and on the other hand, you're hey, everybody makes mistakes. It worked out, the problem got solved, I didn't get fired, we'll try again tomorrow. Which one of those is going to help you have a better day? Yeah, that's what it's all about.
29:38 - Kerly (Host)
It's all about the choices that you never think so much that you have the choices that you're suggesting. There is so much choice in it that we seem to be picking the wrong ones, maybe a lot of the time, and that is what's making things worse than it needs to be.
29:58 - Dawn (Guest)
We beat ourselves up for no reason. Yeah, Don't do it. I used to do experiments. I did this one what happens if I don't stay in bed? Because I used to wake up at like six and then I'd let myself sleep for a half hour and then wake up, and then sleep and then wake up and you know the snooze button right? Oh, yeah, yeah. And so when I stopped doing that, when I threw myself out of bed at the first alarm and didn't let myself go back to sleep, I stopped having those looping dreams where you close your eyes and you fall into the same dream, and they also stopped having that thing where you close your eyes and 15 minutes goes by in an instant, in a blink.
30:52 - Kerly (Host)
Yeah, because, because that sleep doesn't help you. Yeah, where did it go?
30:56 - Dawn (Guest)
Yeah, it doesn't help you. It actually hurts you, because if you get up and you stay awake, your brain starts booting up and you start waking yourself up and after it takes me an hour, seriously, every day to get fully awake and if I snooze I'll be tired all day.
31:18 - Kerly (Host)
Get up, stop snoozing, it's killing yeah, I have my sister's gonna like to hear this, because she always tells me this. I need to work on that, oh you know what?
31:28 - Dawn (Guest)
I'll tell you. I'll tell you what I did. I decided to do an experiment for one week. For one week I made myself get up the first time. I woke up, no matter what time it was, and then I said to myself if it doesn't improve anything in a week, I'll go back to doing it the way I did it before. And then I don't feel that lack, I don't feel that you know quitting smoking right, when people tell you get a quick smoke, you smoke more.
31:59
If you say, if you give it a time limit it's only a week. It's only a week. I'm going to make myself get up the first time. I wake up and see what happens, and then it takes pressure off.
32:10 - Kerly (Host)
Okay, I'll give that a try. My system will be so pleased about it.
32:17 - Dawn (Guest)
No doubt.
32:18 - Kerly (Host)
I'll give it a try and see if it helps me. So how do you feel narcolepsy has affected your mental health?
32:29 - Dawn (Guest)
For most of my life it was like I had a governor on my mental health. Like when you rent a truck to go move somewhere, they put a governor on the speed so you can't go over a certain speed.
32:47 - Kerly (Host)
Oh, okay.
32:54 - Dawn (Guest)
So that's how I felt. I I really, truly believe that sleep deprivation made everything more difficult for me to comprehend, and so I needed to hear things a bunch of different ways before they sunk in and they also had shift, that that that locus of control had to come inside to me. I had to make my feeling. I actually went to a party once and there was a psychic lady there and she said I could ask her a question. And I couldn't think of any psychic questions. So I just said what do you do when people are vomiting their emotional garbage all over you and it's making you tired? Like what do you do? She's like just excuse yourself.
33:36 - Kerly (Host)
Yeah, and I'm like but.
33:40 - Dawn (Guest)
But isn't that rude for me, don't they need somebody to talk to? She like why are their feelings more important than your feelings? Why did I have to be 40 to hear that? Why did I have to be 40 to hear that? And then another one was when I was at rock bottom with my writing partner and there was a song and the lyric was I just want to, I just want to be okay, be okay, be okay. And then I thought it was a cute song and she's like why just be okay? And I was like I'm like six feet under, okay, right now. Okay, looks like a tropical vacation to me.
34:22
But I thought about it. You know it became one of those earworms I've got in my head and I thought can I? Be more than okay like it's not even allowed, with nine disabling disorders, combative, ex-husband, financial problems, health and my life was in the toilet. Is it possible?
34:45
to be more than okay and I decided to find out, can I do this? And that's when I adopted Happy Matters and I looked around, I did this thing. It was a gratitude exercise 100 things a day that I was grateful for Wow, that's a lot in a day, a lot. And I did it for a month. I had notebooks and notebooks and I would write down things and I wouldn't just like pull words out of the dictionary Like I really I had to feel gratitude for the thing. So it it could. I couldn't talk about my family, but it had to be something different that I was grateful for, about not just my family. And you know, by the time you're in the 70s, you're like I'm grateful for yellow mustard on hot dogs and baby wipes at the beach, and you know, it's just like you're really reaching for things to be grateful for. And so I have two pain disorders.
35:48
One of my pain disorders is called myofascial pain syndrome and yeah, so the sheath around the muscle shrinks and when I go like this, it feels like I'm ripping myself in half it's ridiculously painful, and it's I let. The human brain can only pay attention to 17 things at a time.
36:12 - Kerly (Host)
No, I didn't know that, that's really thoughtful.
36:16 - Dawn (Guest)
I want my 17 things to be good. I don't want to be focusing on the fact that I'm in pain. You know I want to focus on yellow flowers and hummingbirds and my head. I like my head.
36:28 - Kerly (Host)
Yeah, it's nice. Did you knit it yourself?
36:32 - Dawn (Guest)
No, no, I'm not handy like that, Not crafty. All my craft is in my mouth.
36:40 - Kerly (Host)
I was going to say because narcolepsics tend to be quite creative.
36:44 - Dawn (Guest)
They do. Yeah, I am very creative. Yeah, just not in a physical capacity.
36:50 - Kerly (Host)
If there's one takeaway you you like people to take from your podcast, what would you like it to be?
36:56 - Dawn (Guest)
love yourself, especially if you feel like you don't deserve it. Love yourself even more. This is the key. Without love within you, you have, and there are so many different ways to learn to love yourself. Now, on Marine, I mentioned the State of Mind Academy.
37:19
We have a free group and I put thriving content in there on a regular basis. And if you're in a business, there's also sales tips and stuff in there. The person that owns it is an NLP trainer neuro-linguistic programming regular basis. And if you're in a business, there's also sales tips and stuff in there. The person that owns it is an NLP trainer neurolinguistic programming and I'm also studying right now and it's fun because I really worked hard on trying to change who I was as a person, to be the person I wanted to be, not the reaction to the world I had grown up in, not the reaction to the world I had grown up in. And as I'm studying this neuro-linguistic programming, I'm discovering that I figured out a lot of these things by myself before I even took the class, so I gave myself a big pass.
38:04
I mean, I grew up in a little town where we didn't have the internet, and here I am talking. My Narcolepsy page is reaching 600,000 people. Oh, wow, that's amazing. So from 14 kids in my class to making 600,000 people laugh, it's a big deal.
38:24 - Kerly (Host)
Yeah, it is. Yeah, it is. So if you say to the listeners where they can find your YouTube channel is or your Facebook where they can find you, For sure If you search the at symbol and my first and last name, dawn Super.
38:42 - Dawn (Guest)
So go to YouTube and search at Dawn Super, I'll pop up and on Facebook you can find me that Positively Narcolepsy by Dawn Super is my page, and I also have a Positively Narcolepsy group, the cocktail party, and on my page you can find the link to join the State of Mind Academy. It's. It's a great place to to learn these kind of things that you don't really see. You have to hunt these things down normally, but I want to feed them to you. That's my purpose. That's why I survived all of this stuff and gained all of this wisdom was so that I could get a big audience and tell all of you.
39:23 - Kerly (Host)
Yeah, that's beautiful, it's so nice that you're giving back in this way. Yeah, it's a real, real show. Nice that you're giving back in this way yeah. It's a real show of advocacy for the community. I like that. So, dawn, if there was a red button and you could press the red button and your narcolepsy would go away, would you press it?
39:44 - Dawn (Guest)
Yes.
39:45 - Kerly (Host)
You would press it Without hesitation.
39:47 - Dawn (Guest)
yes, and I would take everything that I learned from having it for 41 years with me and with other people.
39:57 - Kerly (Host)
I like that. That's different. No one has said that so far, since we've asked this question. I like that. I like that. I think that's a good one. I like that.
40:07 - Dawn (Guest)
I like that. Yeah, it would be a blessing for any of us to be able to cure narcolepsy in our lifetime. But I think that each of us, if we look inside and examine ourselves, we'll see that it really made us into incredibly resilient, strong, caring, thoughtful people.
40:29 - Kerly (Host)
Yes.
40:30 - Dawn (Guest)
I agree, that's so true. And I'll share one more fun thing. If you Google, george Church narcolepsy. George was a geneticist and he was responsible for the creation of CRISPR, which is gene editing, and a lot of his ideas came from his dreams during his naps. He has that article out that he considered narcolepsy a feature, not a bug. Yeah, that's a perspective.
41:03 - Kerly (Host)
huh, it's a good read though Say his name again George Church, george Church, george Church.
41:12 - Dawn (Guest)
You have to add the word narcolepsy and the article will come up for sure. Okay, so you hear that everyone.
41:17 - Kerly (Host)
check out George Church narcolepsy and read up on this Quite a few professors that have narcolepsy.
41:25 - Dawn (Guest)
There are doctors in my group who have narcolepsy.
41:37 - Kerly (Host)
That's quite interesting. There is a lady I know her doctor has Neurocalypsy and she goes that and she has six kids.
41:39 - Dawn (Guest)
But she had them before she got Neurocalypse.
41:40 - Kerly (Host)
Yeah, cause they're very close together, like one after the other after the other, but she goes. It's so nice to have a doctor that has it, so he knows and she doesn't have to like really be fighting or playing her style.
41:52
Well, thank you so much for having me on yeah, thank you for sharing your story, really, really appreciate you and thank you everyone for listening and happy napping. Everyone 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.
