Choosing To Laugh When Your Brain Misbehaves with Jane Rogers

The human brain might be the most sophisticated “machine” we know, but sometimes it does things we never asked it to do. That’s where today’s conversation goes: into the quiet, real-world truth of living with epilepsy, beyond the movie-version moment of a seizure and into the other 99% of life that people rarely see.

We’re joined by Jane Rogers, author of the memoir Laughing Through the Storm, who has lived with epilepsy for more than 30 years. Jane breaks down what unpredictability really feels like when some seizures come with no warning, turning everyday tasks like stairs, crossing a street, or even cooking into a risk assessment. We also talk about the emotional weight of staying silent, the shock people show when you’re upfront about epilepsy, and the subtle ways stigma appears when others talk down to you. Jane shares how she learned to advocate for herself by calling it out calmly and directly, and how that honesty can change a room.

We also get practical about seizure triggers, stress, sleep routines, and the toll of epilepsy medication side effects like migraines, grogginess, and brain fog. Jane highlights the kind of support that actually helps: loved ones who track symptoms, partners who take on driving and heavy errands, and small adjustments that lower stress without shrinking your life. And we dig into the heart of her message: why humor became her best tool when meds weren’t enough, and how laughter can keep hope alive during the hardest seasons. Jane also shares where to find her work at laughingthestorm.com and how proceeds support Epilepsy Ottawa.

If this story makes you think of someone carrying a hidden storm, share the episode with them, then subscribe and leave a review so more people can find these conversations. What part of living with epilepsy surprised you most?

Transcript

The Brain As A Fragile Machine

SPEAKER_00 0:00

The LSN is here's a thought I keep coming back to. Like, we treat the human brain like the most advanced machine ever built. Right? And sometimes I also feel and I not think, but I feel it is true that it is one of the more one of the first AI and the human AI that we have before the artificial AI has come. Right? So exactly. So so billions of Nurians, uh, trillions of connections, the most sophisticated professional is I mean in the known universe. So we celebrate it when it works, but every once in a while, in someone or somewhere, this incredible machine misfires. Yeah. Sorry for using the word misfires, but yeah, a storm passes through it, the light flicker, the uh world goes briefly elsewhere. And the person inside that brain has to learn how to live a full, beautiful, ordinary life inside a body that doesn't always behave the way the world expects. So that's a kind of strength most of us will never have to know, right? So, and and it's a kind of teacher, like most of us never get to meet as well. So, so hey dear listeners, welcome back to another powerful episode of Mind Meets Machine. I'm your host, Avik, and today's conversation is all about a I would say different kind of machine, like the one that we carry around inside our skull, the one we call our brand, and what it means to live an honest, hopeful, even funny life when the machine sometimes does things you didn't ask to, right? Because the bravest stories of this show are not always about the technology around us, sometimes they are about the technology inside us, and the people who learn how to dance with it inside of to fight to fight it, right? Instead of fight it. So and today we have a very lovely guest with us. Please welcome Jane Rogers. So welcome to the show.

SPEAKER_01 2:21

Thank you so much for having me. It's a pleasure.

SPEAKER_00 2:25

Amazing, amazing. So, so Jane, like before we delve deep into our discussion, I'd quickly love to introduce you to all of our listeners. So Dear listeners, Jane is the author of her debut memoir Laughing Through the Storm about her life living with epilepsy for more than 30 years. And her mission is very simple and powerful to raise awareness for a condition that millions live with quietly, and to offer real hope and real strength to anyone in the middle of their own storm of any kind. So, I'll not take much of a time, dear listeners. Let's get started. And Jane, welcome to the show. I'm really honored to have you here.

SPEAKER_01 3:07

Yeah, thank you so much for having me again.

The Unpredictability People Never See

SPEAKER_00 3:10

Yeah. So so Jen, like I definitely want to start gentle, like, because I think there's a misconception that is sitting at the very corner of how the world talks about epilepsy. Like people often only think of the most dramatic image of it, the one they have uh seen in a movie, the one moment of crisis, and they don't realize that for someone living with this condition, the movement is the smallest part of the story. The real story is kind of uh is the other 99% of life around it. So if you can share from that, like uh what do most people fundamentally misunderstand about what's I mean, what it's actually like to live with epilepsy day to day, year to year.

SPEAKER_01 4:02

Yes, what people really don't understand is how unpredictable the disease is and how the everyday things that people do, sometimes we as epileptics uh don't feel safe to do. For instance, for some epileptics, they black out during their seizures and they don't have any warning signs. So the difficult walking down the stairs for an average person, not a big deal, right? But for us epileptics, uh if we're not feeling that great that day, if we're walking down the stairs and all of a sudden the seizure decides to strike, then we're gonna fall down like a sack of potatoes. For my own self, I luckily have warning signs, so it's most likely not gonna happen in that case. But there's a lot of epileptics that have that um blackout seizure where they have no warning signs, so they can't protect themselves. And again, walking across the street, for instance, there's so many things, or holding a knife while you're chopping your vegetables, doing you know, making dinner, you know, those kind of things as well. You just don't know. So we're always on edge and worried, especially if there's if you're not feeling quite right that day. You know that okay, something could happen. So you have to be a little more cautious with what you choose to do that day. That is something that in my case I always have to watch out for if I'm feeling a little off, like there's this the chemical imbalance that is causing me to be on more on guard. I I choose to stay at home and do things that are, you know, just be more careful, you know. So people just don't understand those kind of things. And we always have to be more like be more aware of what's going on in our body. Like if there's something that's slightly feeling off, we know, okay, maybe there was a trigger there. We have to be very hyper-vigilant on what we do on an everyday basis, making sure our stress levels are not so high, those kind of things. And of course, for some epileptics, it's food related or drinking too much coffee, all those kind of things can be triggers. So we have to be very careful. You know, like you said, a lot of epileptics choose to stay silent. And sometimes it is the right move if they're uh in a high-powered position with their work. So they have to be a little more careful. And you know, if you're not feeling if they're not feeling that great that day, they have to try to maneuver and try to get in a place where it's a little more safe without causing any people to raise, you know, some, you know, what's going on kind of thing.

SPEAKER_00 6:46

So exactly.

SPEAKER_01 6:48

Yeah, it's it's a lot of that, and it can be very isolating in that regard, because you know, you want to as well sometimes protect your loved ones with uh not making them too much too worried about you, so you're not necessarily always telling them the full truth of what's going on, so you feel very isolated and not being able to talk about it. So, yeah, anyways, that's kind of you know the gist of it.

SPEAKER_00 7:14

Exactly.

SPEAKER_01 7:15

Yeah. Yeah.

SPEAKER_00 7:16

I mean, I I I totally agree. And like you said, and from there, I

Disclosure, Stigma, And Self-Advocacy

SPEAKER_00 7:20

one more thing that's coming to my mind, like, but when someone in your life finds out, uh I mean, for the first time. So what is the what is the look in their face? Like, even I mean, you have seen the most, right? I mean, the the the kind born and the not so kind one.

SPEAKER_01 7:37

I mean, when I tell uh when when I first tell somebody that I have epilepsy, they they tend to be actually a little more it was surprised that I actually was honest about it. Seriously, it's true.

SPEAKER_00 7:49

Yeah.

SPEAKER_01 7:49

You know, like I mean, it it took a long time for me to be more comfortable with being honest right away, but for the most part, people are uh surprised for starters that I was honest about it right right off the bat. And then generally they're more curious afterwards to understand it a little more. Sometimes when people hear, I mean, it depends on the person, there's a lot of misconceptions about the disease. So sometimes people will when they find out I have epilepsy, they have talked down to me like I'm a child because they think, oh, well, you know, you they have she has a disability. So right away they think that. And, you know, I stayed silent about that for a long time, being very angry about that kind of thing. But I I decided at one point, I'm like, okay, it's getting in the workplace. I had to stand up for myself and say, hey, you know, in a respectful way, confront them and say, Do you realize what you're doing? And then once they uh once I made them aware of it, they felt completely mortified and embarrassed about their behavior. And they changed completely just like that. And they they I almost got their respect for being quite honest and upfront, just like just standing up for myself.

SPEAKER_00 9:07

No.

SPEAKER_01 9:07

Sometimes you need to do that because some people, you know, so some people are they do purposely to, you know, talk down to you and so forth. They're not necessarily the best people, but for the most part, people are just they're they they have the misconceptions and they really don't realize what they're doing, and they just need to be told, hey, that's not okay. Do you realize what you're doing right now? And then they'll change their ways, you know. But you have to just I've learned that I have to be more um, I have to stand up for myself more, you know, in that regard.

SPEAKER_00 9:42

Exactly, exactly true. And yeah, I mean that tracks because I think the world has been trained to see the Caesar and miss the person. And what you are naming is that you have spent 30 years being a whole, complete human with a career, with relationships, with a sense of humor, with a story. And epilepsy is one chapter inside that, not the cover of the book. So the fact that your memoir is called Laughing Through the Storm, it tells me everything that I need to know about which one you decided to lead with. That's that's definitely really, I'll say, beautiful place to start. And also, if you get a bit deep into this, like because 30 years is a long time, and you were not a child when this began and and an adult by the end of it. You were one person who slowly, season after season, learned how to be in a relationship with a body that sometimes did the unexpected. So if you can share, like what's the deeper and the quieter thing this condition has taught you about being human? Like, not the uh the slow one, but the one that took you years to actually understand.

SPEAKER_01 11:03

Well, for starters, it took

Acceptance And Daily Life Reality

SPEAKER_01 11:05

me some time for me to, I guess, you know, acce accept the condition for starters. Um, because for many years, and I know a lot of epileptics have issues with accepting their conditions, but it's not just just like accepting it, oh, I'm gonna be an epileptic for life, but it's about accepting where I am at and maneuvering around it so that I could still live a fulfilling life. And, you know, it's taken some time with that, but now I'm I feel I'm in the right spot because I chose to, you know, speak out about it and and start um making people more aware of it and also to help myself too at the same time. It's taken some time for me to do that, but I am happy where I'm at now. And I know I've been seeing some improvements with myself to it's been a very rocky road with that sort of thing, but I know that I'm on a good path.

SPEAKER_00 12:05

Definitely, definitely. And also I have to make this real for the listeners, like because epilepsy can sound abstract until it touches the floor of someone's actual week. So, I mean, if you can bring it down to the everyday version, what does living with this actually look like on a normal day? Like the version that most people would never think.

SPEAKER_01 12:24

So yes. Okay, so for myself, I basically wake up with migraines every day. It it's it's constant ache in the head. So there's a and with taking all my medications, I feel very I I get the grogginess every day, like the if cloud over the brain. So in terms of functioning very well, it it can be very difficult, especially when I was in school, like the every day trying to wake up and do math and stuff like with the cloud over the brain. It's very difficult. So constantly deal with that every day and then the aches and pains. Also always being very aware of what's going on in my body to see if there's any triggers that I can see so that maybe I can avoid and further down the line. I've been lucky enough to find somebody, my husband, who has been very supportive and basically uh took on the role of the breadwinner winner throughout her marriage, and to try to eliminate a ton of stress, because stress is was obviously a huge trigger for me. A huge trigger for me. So we're trying to eliminate that as much as possible. The everyday, yeah, it's it can be tough in that regard, especially migraines, because migraines then you're dealing with if you if it's somebody who's uh has a regular nine to five job dealing with the migraine every day, you're barely functioning very well. So it can be tough with that kind of thing. Sleep is very important. So the sleep routines, so on an everyday basis for myself, I'm always I always try to get at least nine hours of sleep. Like I s I do not get up early in the morning, I'm not worried person. Oh my god, no. So sleep is very important. And with taking all this medication, they have the same side effects of sleepiness, grogginess, migraines, it's all the same. And then when you're doing like I take uh three or four types of medications, they're all the same. So I'm gonna get the same kind of side effects. So I'm it's it can be tough because if you're trying to focus on something, a task or whatever, or whatever it is, you know, it it can be um challenging when you're dealing with a brain like mine with all those medications and stuff. It's not easy with with that stuff. You want to be on less medication, let's put it that way.

SPEAKER_00 15:01

Exactly, exactly.

SPEAKER_01 15:02

You want to aim for that.

SPEAKER_00 15:04

Yeah, definitely it'll be, and uh definitely, definitely everyone loves loves it. I mean, who wants to have medicine? I mean, unless it's very very much what to use the word, unless it's very much problematic or very much very sincere or very sensitive issue. So yeah. Yeah, yeah. Exactly. Yeah. And yeah, like and the things like people closest to you do actually help. The small things that

The Quiet Help That Matters

SPEAKER_00 15:35

don't look like much from the outside, but mean everything. So what are those? Anything that you can say.

SPEAKER_01 15:43

Well, I I would say growing up, like with with my parents and so forth, they on the everyday basis, they were like taking so many notes about everything that was going on with me. Anything that was odd behavior, they would take a note of. And of course, the days I have seizures, so bringing that to the doctors to so that they could help me even more. Uh, so they they were constantly doing all that sort of stuff and trying to make my life as easy as possible, less stressed as possible. Now, like with my with my husband, he he takes on a lot of responsibilities and he's been we're like I said, he's the breadwinner, so he's always doing that. Since I can't drive, he generally is going out and doing the groceries and things like that, uh, for the most well, the bigger loads, anyways, because you know, I I can't drive. So it's like either take the bus or take it an Uber or walk down if you know it's nice enough to do so. But he's he's chosen to or is will wants to try to alleviate all that stuff this stress for me. So he's taken on those roles that sometimes you know you want to do a lot uh do more or even a workload. But for myself, sometimes it's just not as accessible for me to be able to go and do those uh just simple tasks. So he's been amazing in that regard. You know, he's yeah, taken on a lot, but you know, I've also given him a lot of support with his endeavors, and so we're a good team that way, or a very good team that way.

SPEAKER_00 17:24

Exactly.

Why Humor Becomes Survival

SPEAKER_00 17:25

That's really lovely. And also, like uh I'm gonna talk about your book now because I think the choice to write Laughing Through the E Storm says as much as anything in it. Most people, after 30 years of carrying something heavy, would either write a serious medical memoir or just stay private and move on. But you choose neither. You choose laughter inside the storm. So so if you can say like uh why laughter? I mean, of all the angles, like what does humor give you that no other tool can?

SPEAKER_01 18:00

Well, you know, it's always just been the best kind of coping mechanism for me. And it really took a huge play in my life in my early 20s when I started to dislocate my shoulder. It was a very dark time. And like my my parents and I, like, we went down to Blockbuster, and like at that time, like the VHSs were becoming extinct, so they were having like a two-dollar sale on all these comedy movies. So we were just loading up but using humor to try to keep me in a positive mindset. So it really and it really uh helped me uh during that time because it was it was very difficult. I I knew that well, from that, from then on, you know, like it just was a lot easier. It's like you either choose to laugh or cry, you know, neither that I didn't want to be crying all the time. So prefer laughter. It's a lot easier for me. And I try to keep things light because things at times have been very heavy. And you know, it's not fun to just be you know down on yourself all the time like that. So I choose to see the the light when there's darkness, and you know, always like whenever I'm having seizures, like what I try to, you know, I have a like, oh well, this seizure was easier, so thank you for that. Yeah. Instead of instead of being negative about it, because unfortunately with my brain, you know, like I mean, when it gets so on fire, it needs to have that seizure. Yeah, I always hope it's gonna be an easier seizure than others, and when it is uh an easy seizure for me, then you know, I'm I'm grateful for that at the very least. Laughter has been the big uh the best tool in my tool belt because medications have not worked for me. I'm one of those 20 or 30 percent of people who uh do not react well to standard uh epilepsy meds. So you know, yeah, unfortunately. But yeah, laughter, like I like I said in my early 20s. Oh man, did I ever need that? It and it like it got me through it. It got me through that time because it was it was so tough. Yeah.

SPEAKER_00 20:17

Yeah, yeah, I totally understand. And and and because from your experience, because uh I want listeners to learn, obviously, what we discussed today is something it's a it's a great lesson to learn from because as I mentioned earlier, also 30 years is a long and many people could have left or I mean they they didn't even thought of that there is a hope also, right? But you you overcome this and you came up with a very great way of laughter, so that is a great way of learning. So from there, if you can just give one concrete suggestion to all our listeners today, what that would be so one concrete uh lesson? Yeah, lesson suggestion,

One Lesson, Where To Connect, Closing

SPEAKER_00 21:05

yeah.

SPEAKER_01 21:06

Well for for anybody who is Oh boy. Well, from experience with the epilepsy side of things and how I chose to grow up, uh like deal with it for many years, I just I would hope for people to be more brave and start speaking about what's going on with them because holding it inside all the time is not healthy whatsoever. And more often than not, when you start talking about this sort of stuff, there's gonna be somebody else beside you who's gonna be like, oh my god, yeah, I I can totally relate in some regard. And it'll make them more brave as well, and to talk about it. I've learned that through when I've been in Toastmasters when I've shared my uh stories, like it was like almost a domino effect where people started like, oh my god, yeah, like you know, like she's willing to just share all this, I'm gonna do the same, and it feels better for them too. So being more brave and being more just being more open, being more brave to be open about what's going on with them, it can be a lot, it could be very healing, very healing thing. And we need a little more of that. I I wish I was more brave when I was younger to do that sort of thing, because you know, it would have been better for myself. And uh I, you know, hope that with me doing this more now, that I will encourage and and give people more, make them feel more brave to actually step forward and start talking as well about whatever's going on with them.

SPEAKER_00 22:46

Exactly. And if listeners wants to connect with you, what will be the great medium to connect?

SPEAKER_01 22:51

Yeah, so my website is laughingthestorm.com. So they'll be able to see like the my social media links and other information about what's going on with my endeavors, and of course, where to find my book as well as like on Amazon and some other bookstores in my area and other online locations, and that you could find all of that at that my website.

SPEAKER_00 23:21

Amazing. So, dear listeners, what I'll do is I'll put all the links.

SPEAKER_01 23:24

One more thing, one more thing as well.

SPEAKER_00 23:26

Yeah.

SPEAKER_01 23:26

All my proceeds of my book are being donated to the Epilepsy Ottawa organization. So it it is has always been a purpose-driven project for me to help others and to help this wonderful organization.

SPEAKER_00 23:41

Exactly, exactly. So, dear listeners, what I'll do is I'll put all the links, details, everything into the show notes for your easier friends. And thank you, Jen, for sharing your perspectives, your knowledge, your experience. And generally, there's a softness and strength sitting next to each other in the way that you tell your story, and uh that combination is rare. So I think definitely a lot of people listening just felt less alone, and that's the highest thing any conversation of on this show can do this, right? So, for everyone who is listening, or maybe you'll be listening later as well, if something here moved you, sit with it for a moment before you move on. And if you know someone living with epilepsy or any chronic condition or any battle they don't talk about much, then share this with them. Sometimes the bravest thing is the person can hear is someone else got through this in their own way, and they made it out with their their spirit intact. So Jane just gave gave us uh and gave that a lot off people today. And with this hope dear listeners, this is your host awake, and this is my meets machine. We will meet you back here soon. Until then, be gentle with the storms inside you. Don't last forever. Thank you.