A Public Seizure Fear

SPEAKER_01 0:05

What do you do when your body does something you did not ask it to in the middle of a grocery store, in a meeting, in a moment you had no way of preparing for? Most of us have never had to answer that question. But for millions of people living with epilepsy, that is not a hypothetical. That is Tuesday. And for decades, the response to that kind of uncertainty has been to go quiet, to hide, to protect yourself from the judgment that comes when people don't understand. Today, we are talking exactly that. Welcome back to Healthy Mind, Healthy Life. I'm your host yourself, and this is the space where we have the real conversations. The ones that don't always have tidy endings, but always carry something true. Today I'm joined by Jane Rogers, a woman who has lived with epilepsy for over 30 years, survived brain surgeries in countless seasures, and turned all of it into a memoir for Laughing Through the Storm. Jane, it is truly a pleasure to have you here today with us.

SPEAKER_00 1:27

Yeah, thank you so much for having me. Um it's a a pleasure to re uh to have you guys reach out to me and for you to want to have me on your podcast. It's um it's great. Thank you so much.

SPEAKER_01 1:43

Yes. Uh Jean, so let me start here like on a very personal note.

Why Laughter Becomes Survival

SPEAKER_01 1:50

The title of your memoir is Laughing Through the Storm. And I find it genuinely fascinating because most people, when they think about writing a memoir about illness, they think of it as something serious and heavy. So, what made you land on laughter as the thread?

SPEAKER_00 2:07

Well, um, laughter has always been my coping mechanism, my survival uh strategy. Uh so I knew that that um it made sense for it to be part of the title, and of course, threaded throughout the book, because that truly has always been how I am. Um it's either uh for me, it's either la um laughing or crying the whole time. So I'd rather laugh. So I um yeah, I and and laughing through the storm, like um the storm being my brain, the the storm that brews throughout uh every seizure I have. So that's the metaphor of that. But uh I found that it it just fit perfectly to um how I wanted the book to be like.

SPEAKER_01 3:01

And you know, there's this belief uh that epilepsy, and I suspect most of most of us who are listening have never been into this situation.

Seizure First Aid That Helps

SPEAKER_01 3:16

They never know what it is like to be. So for example, uh if I see someone uh who has epilepsy, how should I treat them? How should I, you know, give them care attention that they deserve?

SPEAKER_00 3:33

Well, like you mean just like after they had the seizure? Yeah, yeah, okay. Well, of course. Um, well, for like if you if you are aware of uh the person uh being an epileptic, um the first thing I would say, like if you if you're seeing them having a seizure at that point, um, if you know they have epilepsy, then the first thing is to not just automatically call the ambulance. Uh what you want to do is you want to start timing the seizure because it if the seizure goes past five minutes, then it's critical. Then it's important that you call an ambulance. And I really would think um five minutes is a little too long, but that's what they generally say. And uh when I have my seizures, I I tell people to always uh um you know to say uh calming words like it's gonna be okay, it's almost over, that kind of stuff. And um, if there's nothing, if there isn't anything soft underneath their head, you want to place something soft under their head because they're gonna be now if they're on their ground, they're gonna be hitting their head against the ground. So you want to uh put something nice and soft there. Um, and um so yeah, you want to time it, do that, and then afterwards, you kind of roll them over on their side to um um to make sure that they're okay afterwards. Um, but uh a lot of people, uh especially if the if it's in a business, they want to automatically call an ambulance. Um, but in a st in a standard case where if you've been having it for many years, more likely than not, you're not gonna uh it's just you're gonna get out of the seizure and you're gonna be fine. And you're wasting these uh uh the ambulance, uh the hospital's time because uh I found when I've been brought to the hospital, um they I basically am there for two hours waiting for a doctor to come with no um medication to help, like uh no Tylenol to help with a headache or whatever. And he just looks at me and says, Go home, that's it. So I'm wasting a bed for somebody who needs um um more attention than me. I just need to get home. So but in in cases if you don't know if the person is an epileptic, of course, it's important to call the ambulance because you don't know their situation. But if you do know they're an epileptic, time the seizure. And then if it gets past a point where it's in uh, you know, like five they say five minutes, then of course call the ambulance. Because that usually standard seizures are between 30 to two 30 seconds to two minutes. That's uh around the standard time for the average person. Um, yeah. So that's what I would say there. And but I like I understand a lot of people, you know, when it's your first time, uh, your uh you know reaction, like what you feel like, oh my god, what am I gonna do? You know, and you it you wanna like call the ambulance right away, but in most cases when a person has had it for many years, it's not necessary for an ambulance to to be called unless they fall and hurt themselves too. If they fall and hurt themselves and they're bleeding, then yeah, okay, call the ambulance. But if if nothing like that happened, then it's not necessary. Yeah.

SPEAKER_01 7:04

And

Bullying, Stigma, And Staying Silent

SPEAKER_01 7:05

you were diagnosed at 13. And what you have shared about that time is that when you told people you were bullied and you learned very quickly that it was much safer to stay silent. I want to sit with that for a moment. Because that kind of silence that a child learns to protect themselves is it does not just go away when we grow up, it shapes us.

SPEAKER_00 7:31

Yes.

SPEAKER_01 7:32

But I think that early silence did you did to you over the years, and when did you start to realize it was costing you something?

SPEAKER_00 7:43

Yeah, so um staying silent like that for so many years, like it you know, you're just in uh isolation, and you um like yeah, once I got bullied, I I uh, you know, like my first reaction to being diagnosed, I was like, oh, I'll share the news with my friends, you know. I I was clueless to what understanding what it was in the first place, too. Um, but uh the reaction I got from it all, like it, it just like it something broke inside of me. And I was like, okay, I have to rethink how I um, you know, moving forward, because now I've just put a target on my back and I had to just stay quiet and be careful who I um mentioned to uh moving forward in the future. Um and it um I I closed up in many ways. I I I built up brick walls for many years, and I also found that it wasn't just the kids, it was adults who when they would hear that I was an epileptic, their honest reaction was, oh, that means she must not understand what I'm saying. So I have to talk to her like she's a child. And and that would drive me insane. I'd like, I'd be like really wanting to punch them in the face half the time, but of course it didn't. But you know, that's how I was just so angry. I'm like, I understand what you're saying. Why are you talking to me like I'm a child? And so people just don't get it. They they have no uh but but later on I started to, I was, I realized I had to start speaking up. And especially when it uh worked itself into the workplace, I was like, okay, this uh I cannot handle this anymore. And they were in management positions, but I was like, you know, I'm gonna go and talk to them in a polite manner, you know, not being like, you know, me uh rude to them, but just in a polite manner, say, listen, I don't know if you realize what you're doing, but when you talk to me, you talk, you're talking down to me like a child, and it's very disrespectful, and I do not deserve to be treated that way. And when they when I had done that, they looked at me and they were just so uh just so embarrassed, bloody embarrassed by their behavior. And from that day forward, uh they you know changed their ways, and and in the end, it um I gained the respect because I stood up for myself and I said something, which you know was uh which was a good thing and a learning, uh learning thing for myself because I am a people pleaser and I don't want to stir the pot. But at some point it's like, man, you know, like I am gonna this is not right, how people are treating me. And and in the end, more often than not, they just don't realize what they're doing. And when they do, when they're told, then they're like, oh my god, I feel like an idiot or whatever, or whatever they would say. But um, you know, it's you have to um I learned over time that I had to be more vocal and start speaking up. Um, but I didn't really uh start getting the help uh through therapy until I was in my 30s, and then that's when I started to uh realize how many walls I built up and how I had to start breaking them down and start rebuilding my um my uh just being more uh getting more confident and uh being comfortable with talking about it because even you you never you I'm not gonna have not everybody's gonna like me or whatever what I'm saying. Uh you know what who cares? You know, you're not gonna you're not gonna have whatever. You know, everybody has their own opinions on how they want uh with stuff. But uh I, you know, I um when I started to uh learn to be more vocal and and start getting my voice back, uh it's been it's been great because I really feel that I'm becoming more myself now compared to how I was when I was younger. I was so uh um scared of saying anything for many years. Yeah.

SPEAKER_01 12:11

Yeah. You know, there's there's something so important about what you just said because so many people listening right now, not just with epilepsy, but with anything they have learned to hide, are still carrying that same lesson they have learned as a child. That it is safer to be invisible. But you are a living truth, that it does not matter, it does not have to stay that way.

SPEAKER_00 12:36

Yeah.

Dark Humor And Awkward Moments

SPEAKER_01 12:40

And let's talk about the humor the role humor for you, not as a way of making other people comfortable, but as something real that actually helped you survive survive. Because I think there's a version of just laugh it off that is actually quite unhealthy, and then there's a different kind of humor, a darker, more honest kind. So was what was you were doing to you internally?

SPEAKER_00 13:12

Well, you know, like I mean, yeah, there's been so many times where it's not like I'm laughing right away, like after you know, this absurd situation happens. Like I get mad, I'm like, oh god. But then I I look at some of the absurdity of that situation, and I and I can't help but laugh at that. Like uh I'll give you for uh um like certain situations uh with other seizures I've had, like um so there's one place that I've had uh a seizure that is the most awkward place, and that is the bathroom. And I'm not talking about while I'm brushing my teeth, uh I'm talking about while I'm on the toilet. So in the midst of uh being there, and when it when the seizure hits, I'm thinking, you gotta be kidding me right now. You couldn't wait one more minute, one more minute. I can only go, oh my God. So I'm I'm so mad at that moment. And and but then I'm thinking uh after the afterwards, I'm like, you know what? I'm gonna laugh at this one day, at the absurdity at the timing, the timing of the seizure, like uh honestly. And maybe one day I'll be talking about it on a podcast. You never know. So yeah, you know, I like, yeah, you don't, I don't necessarily like I'm not laughing specifically after that exact time, but sometimes when there's timings of seizures, it it there's another story where I uh when I was in testing for brain surgery, I had a roommate, she was a lovely girl who was uh going through uh university and trying to figure out why she's having all these seizures. And one night uh she started having a seizure, and so I uh uh press the call button to get the uh nurse's attention saying like she's having a seizure. They come in and then all of a sudden, right when they start coming in to help her, I start having a seizure just like that. So, and at that time I could see like I was not, I didn't, I wasn't blacked out, I hadn't blacked out, so I was aware of everything. I saw everything that was going on, and I was trying to will them to not help me and just help her, but because they were they were looking both back at me and the other girl, thinking, who are we gonna help first? And then they were calling the intercom, like get more help over here. So I'm thinking, I'm thinking, okay, I don't want to be laughing, but the timing is kind of like I mean, it's the absurd timing of it all. I couldn't help but laugh inside inside, but also feel bad for the nurses because they were in complete panic mode about the chaos that me and my roommate did for that that evening. But you know, I mean I couldn't help but laugh afterwards. Uh the the fact that I had to stay my brain had to stage a rebellion and start more chaos in the the hospital that night. Yeah. But yeah, yeah, it's learned to laugh in those situations, you know.

SPEAKER_01 16:13

Yeah.

Where To Find The Book

SPEAKER_01 16:15

For people who want to connect with you or want to learn more about your work, where can you do that?

SPEAKER_00 16:21

Yeah, so my website is laughingthestorm.com. And you'll be able to find out where to um purchase my book and as well my uh social media tags there, and I'll be adding more blogs on in the future and uh and stuff to that extent. But that's where you could uh they'll be able to find out for more information about me.

SPEAKER_01 16:47

Perfect, and to everyone listening, all these links are in the show notes, so just go and check those out. Jean, do you have any last message that you want to leave us with?

SPEAKER_00 16:59

Yeah, well, um I uh you know um I never thought in a million years that I'd be writing I I would have written a book in the first place. So here I am, I've written a book, and I truly hope that my my book brings some um you know laughter to people that whoever are struggling, but also strength for those such uh like similar to me who um held things in for so many years, and to give them the strength to start talking and and sharing their stories. Because it truly, when you start talking about that sort of stuff, it can be really powerful and very um um you know healing in uh form for your own self. So I I hope that that uh that my book will kind of start um um giving people more um courage to start speaking out and spreading more awareness and and standing up for themselves as well. Um so yeah, that's that's that's it there.

SPEAKER_01 18:04

Yeah, thank you so much for the honesty, for the laughter, and for being someone who decided that her story was worth telling out loud and without any apology.

SPEAKER_00 18:20

Thank you so much. I appreciate that.

SPEAKER_01 18:24

And to everyone listening. If today's conversation touched something in you, please share this episode. You never know whose silence it might gently break. This has been Healthy Mind Happy Life. I am Yusuf. Be kind to yourself this week, and we'll see you in the next one.