What if joy were something you chose on purpose, even while living with epilepsy? In this illuminating episode of Read. Talk. Grow., Dr. Denise Millstine sits down with novelist Katherine Center and neurologist Dr. Katherine Noe to explore how What You Wish For brings the often‑hidden world of epilepsy into the light. Using Sam - the novel’s vibrant, joy‑seeking librarian who quietly manages a seizure disorder - as a lens, the conversation blends storytelling with medical insight to unpack stigma, resilience, and the emotional terrain of living with an unpredictable condition. Center shares how real‑life conversations with a close friend inspired Sam’s journey, while Dr. Noe explains key concepts like auras, the realities of driving, treatment, and safety. Together, they highlight how knowledge combats stigma, how joy can be an act of courage, and why -as Dr. Noe reminds listeners, “the fear… can be much more disabling than the seizures themselves.”
This episode was made possible by the generous support of Ken Stevens.
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Dr. Denise Millstine
Welcome to the “Read. Talk. Grow.” podcast, where we explore health topics through books. Our topic is epilepsy and our book is “What You Wish For” by Katherine Center. I'm your host, Dr. Denise Millstine. I'm an assistant professor of medicine at Mayo Clinic, where I practice women's health, internal medicine, and integrative medicine.
I'm so excited about my guests today, including returning author Katherine Center, who's the “New York Times” bestselling author of 12 novels. She writes deep, nuanced laugh and cry romcoms that brim with hope and healing. Her books have made countless best of lists, and two of her novels have become global top ten movies on Netflix, and a third is in production right now. Her Spring 2026 book is “The Shippers” and today we'll be talking about the 2020 “What You Wish For.” Katherine lives in her hometown of Houston, Texas with her husband and their fluffy but fierce dog.
Katherine. Welcome back to the show.
Katherine Center
It's so fun to be here. Thanks for having me.
Dr. Denise Millstine
Our medical expert guest is Dr. Katherine Noe. She's an associate professor of neurology and the chair of the Division of Epilepsy at the Mayo Clinic in Arizona. Dr. Noe completed fellowship training and clinical neurophysiology and epilepsy at Mayo Clinic. And now her clinical practice involves medical and surgical care of adults with epilepsy with specific interests and improving quality and safety in the care of persons with epilepsy and in women's health.
Katie, welcome to the show.
Dr. Katherine Noe
Thanks so much for having me.
Dr. Denise Millstine
“What You Wish For” is a modern novel about Sam, a school librarian who is choosing brightness and joy despite having lived through some difficult times. After the sudden death of the school's director, Sam's prior heart throb, Duncan, comes to the school intending to make some cultural and rigid changes. In the background. Sam is navigating her own health issue of epilepsy that has impacted several of her life choices.
Okay, you both know how “Read. Talk. Grow.” works; we discuss books that portray health conditions in an effort to better understand health experiences through story. And today we'll talk about epilepsy. Katherine, tell us your inspiration for “What You Wish For.”
Katherine Center
Well, there were a lot of things that inspired it. I mean, I am married to a schoolteacher, so that's how the school setting got started. He's been teaching since the late 90s, so I've been a teacher adjacent for a long, long time. And my mother has a degree in library science. So I'm a big fan of librarians.
And the book is set in Galveston, Texas, and that's where I write all my books. So it's really, really fun to set a story in my sort of special writing town. And then the topic of epilepsy, which really became sort of a big aspect of the story, happened because I have a dear friend whose daughter has epilepsy and has struggled with it in different ways over the years.
I mean, our kids are the same age, and her daughter had it as a child, and then it went away for a while and they thought they were kind of in the clear. And then it came back in high school in a much bigger way. And so over years, you know, I would have many conversations with my friend about how they were coping, what they were doing, what their strategies were.
And I was just over and over and over kind of struck by the resilience that both of them, like my mom heart was always just like going through a meat grinder hearing these stories. But the both of them had to kind of summon up over and over and over again as they sort of navigated all of the uncertainty that came along with this condition.
And so I was just kind of in awe of their sort of courage and their stamina and their creativity as they try to think through how they were going to manage it all. And it was also, you know, medically kind of fascinating to learn about. And my friend is a very sort of sciencey person. So she talked a lot about biological things and interesting things about the brain.
So it felt to me like, you know, every story that exists is at its heart kind of about human transformation. Right? And I'm so interested in the way that we as humans on this earth sort of cope with the things that come at us and how, if we're lucky, we can find ways to have our difficulties transform us in ways that make us sort of stronger and wiser and better and funnier and more compassionate and, you know, more human and more kind to each other.
So I really wanted to kind of get inside a character and be with a character, while she herself tried to figure out some of these things. So I had lots and lots of conversations with my friend and her and her daughter, who agreed to come and talk with me about it, to try and do my best to get it right.
Dr. Denise Millstine
I can also imagine being a mom of a child with epilepsy and wondering, where's the happy ending here? And being able to read “What You Wish For” and see this resilient, really sparkling, amazing woman that we're going to talk about in Sam and how that that might feel like, okay, there's something to kind of stretch for with epilepsy as part of of your life.
Katie, tell us your reaction to the book and also what it's like to work with patients with seizure disorder.
Dr. Katherine Noe
Well, thanks, Katherine, number one, for writing the book and for having those conversations with your friend and her daughter and likewise to them for opening up and sharing. Because one of the things I can say is true of epilepsy is people don't talk about it. People don't talk about it with their circles and certainly we don't see it much out in public media.
That might make you think it's rare or unusual, but it's not. It's the fourth most common neurologic condition in the world. It impacts 1 in 26 people. It's across all ages, so it's extremely common. But one of the things that is unique about seizures and epilepsy may be compared to other chronic health conditions, as it remains very highly stigmatized.
And so people are afraid to open up, they're afraid to share, they're afraid to talk about it because of, and I think that's very well illustrated in the book. They're scared about how people in their immediate circles, strangers may react to that diagnosis. So thank you for featuring this and for doing so in a way that I also agree was it was very positive, is very optimistic, as it should be, because I think one of the very common misconceptions about the label epilepsy is what it is and what it means.
People don't understand it. And I think many people would assume wrongly that somebody with a seizure disorder can't be employed, can't have a romantic life, can't, you know, be adventurous, can't try new things, can't be positive, can't be smart, can't be a leader. All the things which you were really able to say that Sam was. So I appreciate that.
And it was a very it felt very true in that way. You know, one of the things I love about the job that I do, working with folks with epilepsy, is all those things. It's helping people understand what it is. It's helping them get treated and have their seizures controlled. But whether they're seizure free or not, seizure free or wherever they are on their journey, it's also about we want to have great quality of life. We want to keep you safe, but we want you to have great quality of life. And how are we going to get you there?
Katherine Center
I do want to add my friend's daughter is now in medical school, in fact.
Dr. Katherine Noe
Oh, wonderful.
Katherine Center
And it's funny because I was realizing when I was formulating the idea for the book and sort of noodling on this idea of trying to incorporate epilepsy into it. We were having lots and lots of conversations about it, my friend and I, because her daughter was still in high school, and also they were at a moment where it was really like happening a lot.
Then her daughter went off to college, like went away, moved away and went to college. I mean, that had its own sort of worries of like, how's she going to do on her own, far away from home. But she did great. And yeah, now she's in med school and has moved back home. And we it's funny because we don't we just don't talk about it as much anymore because it's kind of moved into its own place in life. But other bigger things have kind of taken the focus. So that's kind of lovely too, to follow up on.
Dr. Denise Millstine
I think it's so important to what you both just highlighted about neurologic conditions, conditions of the brain, that there can be assumptions made that this impacts intelligence and intellect and that that's so wrong. So I'm glad that you both have highlighted that through your characters, through comments, through the work that you do.
And I think, Katherine, one of the ways that what Katie's just shared is, is demonstrated in the novel is when we actually first hear about Sam's epilepsy. She's actually we're actually 50 pages into the book when the issue of her seizure disorder comes out and she's in the kitchen with two friends and she starts to feel nauseous, which is an aura that I'm going to ask Katie to comment about what aura is when somebody has epilepsy.
But did you intentionally keep the seizure disorder sort of quiet as part of the story in a way that would be modeling how somebody who kind of doesn't come right out of the gates and say, hey, I'm Sam and I have a seizure disorder, but she's much more than that. She's really effervescent and she cares about the library, and she's got this amazing life. Was that an intentional choice to reveal 50 pages in or just kind of what happened?
Katherine Center
I don't think it was intentional, because actually, I was just surprised when I heard Katie say that it was stigmatized. Like, of course, anything can be. And I totally understand that. There are lots of things that we are all struggling with, that we don't necessarily want that to be the first thing anybody knows about us. But I was not thinking about what Sam in the book is struggling with in terms of the epilepsy as like something that might put readers off in any way or that might create a barrier between like empathizing or connecting with the character of Sam.
Like that didn't occur to me. And in fact, for me, from having known my friend for so long and for having talked so much with her about this condition, for me it was like a window into empathy, right? Because I was so sort of in awe of how brave and thoughtful they were being as they navigated all these challenges, that it made me kind of just love them even more, you know.
So I don't think I was deliberately withholding it. I think I was probably just trying to get all the various plot things up and running. The beginning of a story, it's always about giving everything, everybody they need to know so that they've got all their information, so that then when the plot really kicks in, everything that's happening is like, oh yeah, that makes sense.
Like, of course this, this is going to when you're writing a story. When I'm writing a story anyway, what I'm really trying to do is create emotions and people. Stories are really just big emotion machines. How we feel about the things that happen in the story have a lot to do with what we know about the people. Those things are happening to.
So I always work really hard at the beginning to try and just establish those characters and their arcs and their journeys and their struggles and the things about their lives that they need to confront before we kind of churn up the plot.
So I think the epilepsy piece just sort of came up when it naturally needed to be. I mean, we needed to know about it because it is a big thing that she's kind of struggling with how to be joyful in the face of it. All right. How to live her best life in the face of it all. And this book came out during the pandemic. So it was really a very apropos kind of topic during the pandemic. Joy on purpose, is what this book was supposed to be about.
Dr. Denise Millstine
Joy on purpose. I absolutely love that. And I wasn't thinking you were hiding it. I was just thinking, she's more than that. Like, that's not what she leads with, because it's really it is part of her. But it is not all of her, which, you know, sometimes we can attribute these conditions to.
Katherine Center
But I'll say you do have to think about, like what the order of how you're going to reveal things is. So your question is a very good one. But I was just not maybe not thinking about it as anything other than just like an essential thing about her that she needed to figure out better.
Dr. Denise Millstine
So. So, Katie, just to remind you, what happens is they're standing in the kitchen and Sam thinks to herself. Sam realizes she's starting to have some nausea, and she says, or she thinks the kind of nauseated that I sometimes got while I was on the verge of having a seizure, which happened from time to time, occasionally, once or twice a year.
Fine. I'll just say it. I have epilepsy, so just sort of talking directly to the reader in this thought process. But what is that premonition that you're about to have a seizure that is also called an aura?
Dr. Katherine Noe
Yeah, so an aura is a warning, or many people think of it as a warning that maybe I'm heading for a bigger seizure. Not everybody with epilepsy will experience an aura, but those that do usually find it fairly reliable, fairly stereotyped within their experience. So they learn to recognize what it is.
In point of fact, an aura actually is at the beginning of a seizure. The seizure is underway. It's just that the seizure is restricted to some small part of the brain. The person, by definition, is still awake and aware. They're not confused. They know what's going on. So sometimes we'll call that a focal aware seizure. And typical symptoms that people may experience may be like Sam, nausea or just a feeling in the stomach.
Anxiety can make it hard to tell. And, you know, seizure versus a panic attack, a bad smell, a bad taste. Some people will say an indescribable feeling could be a weird sensation, but it lets them know, hey, things are starting and maybe this is going to progress to something where I get confused or I black out. Or maybe I have a convulsion.
One of the things I would say is for people that do have a reliable aura, and later in the book, Sam has an aura and she says, I know I need to kind of deal with this. I need to get to somewhere safe. But sometimes that's a moment where it allows us to intervene. So Sam feels the aura and she's just like, there's nothing I can do in real life when people have aura, if we have enough time, we can often intervene with what we call a rescue medicine, where something they can take that's really quick acting, that will shut it down and try to block it from turning into a seizure that's more disruptive. So I wish Sam knew that, but that's what it is.
Katherine Center
I do too. I do too.
Dr. Denise Millstine
That would have made many of the scenes less dramatic, but then maybe the story less dramatic as well. I just want to emphasize what you just said, though, Katie, if you would just clarify or restate because it was clear, but you said it's stereotyped in their experience. So I think what I understood you to mean, there is that the aura for an individual is usually consistent, but it is not consistent across many people with epilepsy necessarily. Am I saying that correctly?
Dr. Katherine Noe
That's correct. So there's some auras that are more common than others. But you know, if my auras anxiety every time I have it, that's probably what it's going to be. If you had epilepsy, your aura might be deja vu. You know, a sense that this is all happened before, and that would probably be what you have every time.
Dr. Denise Millstine
And one of the reasons, Katherine, that Sam is thinking that this nausea is her aura is that she's highly stressed. So there's just been this big event at school with somebody that they love, and revered has passed away, and they have this new person coming in, and she has ties to that person. And so her stress reaction is just off the charts. And so we know that stress can be a trigger for seizures. Is that what you were aiming for with that is kind of building up this perfect storm for her.
Katherine Center
Yes and at the time that we were talking about all of this back in 2019 was when I was writing the book, my friend, one of her sort of big laments was that they did not seem to have a good medication, that they had found that that they really loved, that they were excited about.
And I'm sure there have been many, you know, developments and things that have changed since then. But at the time there seemed to be like a downside for every single medication that they had tried. They would make her daughter sleepy or spaced out, or she just never they had not been able to find one. And so they had they would take breaks and, and, and, but then they would try other things and so yeah, so I wish, I wish that I had known about intervening medications.
I don't think I knew about that when I was writing the book. I would have loved to give that tip to Sam, but I was trying to kind of help her find ways of coping that, you know, we're kind of in line with what my friend and her daughter were doing, which were less medication related because they had had they had just had trouble with that.
I wish back then that I had known more about ketogenic diets also. I don't know if you have thoughts about that, but I, in the intervening years, read about that as a potential therapy for epilepsy, and I didn't know very much about that at the time. So there's nothing really in the book about that. But that could have been, you know, maybe that maybe that's what Sam is doing now, six years later.
Dr. Katherine Noe
Yeah, hopefully she's seizure free, wherever Sam is.
Dr. Denise Millstine
Yeah. I want to talk about those lifestyle things that she does. And maybe we can hit on the ketogenic diet, which is not a standard therapy, but something that is tried sometimes with epilepsy. But maybe, Katie, you can go to the very basics for us and tell us what even is a seizure and what are the common symptoms, not only during the seizure but even after a seizure.
Dr. Katherine Noe
Yeah, sure. Great question. So a seizure is basically a sudden, I guess you could say electrical storm in the brain, usually lasting seconds to a couple minutes. And seizures can actually look or feel like just about anything, depending upon the part of the brain that's involved with that abnormal electricity. When people think about a seizure, if you ask them just to describe it, almost everybody, their mind goes to what we call a generalized tonic-clonic seizure or a convulsion; so fall to the ground, stiff, shaking, you know, maybe turning blue. That is a very dramatic type of seizure and a real type of seizure.
But, you know, a seizure could, as we talked about, just be, I feel weird. A seizure could be, I'm confused and staring. A seizure could be, I can't talk. It could be, I have tingling in my hand. It could be, I have body jerks. So it has many, many faces. And I think that's one of the things that's often misunderstood about seizures. It's not all convulsions. It's not all fall to the ground. And sometimes you can look and you can tell somebody's having a seizure. And sometimes you're not going to know it, they may be the only ones who know what's going on.
The seizure is the name we give to the isolated event, epilepsy, and that's a word that sometimes people find loaded for some reason, but epilepsy, all that means is somebody has a tendency to have recurrent seizures. A tendency to have recurrent seizures, so they've had two or more seizures, that's epilepsy. And it doesn't mean anything else about their brain function or who they are or anything else.
And I think one of the things that is also confusing about seizures and epilepsy is it is many, many different things that have seizures in common. So lots of different things can cause seizures. It can happen to a baby. It can happen to a child. It can happen to an older person, it spans the life of human beings.
And so there's so much variability. What causes it? How severe is it? How hard is it to control? What does it look like? And so all of those things roll up in epilepsy. And so one person's seizure journey may really bare very little in common with somebody else's epilepsy journey. And I think that's important for folks to understand as well.
Dr. Denise Millstine
Yeah, actually. And the other book we talked about with you, Katherine, “Hello, Stranger,” the main character has a seizure in the middle of the street that just stops her in her tracks, and she just essentially freezes, and she's never had a seizure and come to find out in this doesn't ruin the book. It's “Hello Stranger.” She comes to find out that she has a brain lesion, which can be a cause of seizures, but does not have to be like in Sam's case. It's not because she has a space occupying lesion in her brain. She has this wiring. Would you agree with how I said that?
Katherine Center
Yeah, yeah. Great.
Dr. Denise Millstine
One of the most heartbreaking things about Sam's seizure disorder, Katherine, is how she's been treated. So she may be very much like your friend's daughter started to have seizures as a child, and in her case, they were very disruptive and they were very frequent at that point.
And she's had interactions with her peers, with even one of her parents, where they have treated her with this stigma, have treated her like she's broken. She even says at one point, “It was like I'd been broken my whole life,” when she refers to those early days of having the epilepsy, will you talk about that a bit?
Katherine Center
Yeah. I think that one thing I always try to do when I'm writing is to make sure that all of the characters in the story have some kind of an arc, you know, a character arc, an arc of growth. Something about the plot forces that character to challenge a belief that she has about herself. Usually the main character, but other characters have these too. I mean, I try to do it with all the big characters in the book. Everybody kind of gets an arc.
With my main characters, who are always women. She has some sort of mistaken belief about herself at the start of the story, that she has never really been forced to question or challenge or rethink. And then, of course, the story is been like part of the reason the whole story exists is to throw her in a situation where she just gets pelted with moments where she has to question this false belief that she has about the world, or herself, or her place in the world, or who she needs to be to function in the world.
And for me, that's like the best thing about reading stories is watching that transformation. I love stories about…I mean, there's all kinds of stories in the world, but my favorite kinds of stories and the kinds that I write are stories about how things can get better. I'm really, really fascinated by how things can get better. And I do feel like the literary world kind of has things getting worse covered. Like we're good there. We've got plenty of that.
And so I'm just trying to kind of go another way, and I'm trying to write stories about how things can get better and how we can get better as people, how we can confront things that we're afraid to confront and how we can rethink our frameworks for how we deal with elements of our lives and go through hard things and come out better and wiser and, you know, funnier, on the other side. And so, yeah, for Sam, she has carried a lot of beliefs about herself and her condition that kind of hold her back or keep her from sort of living fully.
And this story forces her to rethink a lot of those things. And it happens through many different sort of plot elements. I mean, the love story is a part of it, too. You know, she gets this sort of terrible principal who comes in and is trying to suck the joy out of everything, and she kind of has to like, I mean, he's also a former crush of hers, but he's changed a lot for mysterious reasons, and she has to fight for joy in this whole new way over the course of the story that she's never had to before.
And she has to sort of prioritize it and take it seriously and focus on it. And because she's doing it in this one corner of her life, she winds up doing it in lots of corners of her life, especially with her with her health. So I love stories about how things get better, and I think that's what the story's about for Sam.
Dr. Denise Millstine
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Thanks for listening.
I love that, I love how you described it, and I often wonder about authors who have these terrible things happen to their characters. How do you live with yourself like poor Sam? Did you have to have all those terrible things happen, but you need to have those terrible things happen. to create that arc, you can't get better if you started with the picture-perfect world, right?
Katherine Center
So that's right. Again, I think of my stories as sort of half women's fiction. And women's fiction is kind of stories about women that involves personal growth, right, and wisdom and then half love story, half romance is kind of how I think of them. And women's fiction has a lot of hardship in it. And the reason for that, and I'm fully on board with this reason, is that hardship and struggle and difficulty is kind of where wisdom comes from. Right.
The things that we go through in life, that really challenge us and really kind of destabilize us and really sort of tear down all the things we thought we knew, are the things that force us to figure out what really matters, right? And who we want to be in the face of it all. And those are huge, big mental struggles that really we only take on if we're forced to.
So yeah, it is so mean to be a novelist and to force like your characters to go through hard things. And I sometimes I literally will actually cry when writing terrible things happening to my characters. One time I was just thinking about some terrible things that I had just written that happened to my characters, and I burst into tears on the freeway and missed my exit.
So it all feels very real to me. But I do force myself to do it because that's where the wisdom comes from. And I want the wisdom. I mean, I also want the smooching, but I want I want that wisdom. And that's what I think, really. That's what stories are for. You know, they give you this kind of simulated experience of human life that you can pull wisdom out of. I want that wisdom. I'm a sucker for wisdom.
Dr. Katherine Noe
So as I say, it's so interesting to me when you talk about why you included those details about Sam and her epilepsy struggle and, you know informing the story which obviously is really about finding joy, like you said. But if you had asked me, I would have said she clearly got into the academic literature about stigma and epilepsy because it's all there.
So you're an observer of life who's able to, you know, put it into story and make it real. So thanks for that. But it's segment is real. And when we talk about stigma with epilepsy, we break it down. We talk about internalized stigma. That fear of, “I am embarrassed by my diagnosis, I feel shame, I feel fear,” you know. And Sam clearly has moments where she struggles with or acknowledges those feelings.
We talk about interpersonal stigma, which is how other people may react. People close to you when they, you know, see your seizure or you disclose their diagnosis. And she's very open about that struggle, whether it's, you know, her romantic interest, even those people close to her, she is afraid of how they will react. She's very open about it. My life experience is people have pulled away when they know this about me. And so I'm very, you know, fearful of disclosing.
And then we talk about institutionalized stigma. So that's things, for example, like I had a seizure at work and I got fired. I got fired on the basis of discrimination. And that doesn't happen to her. She's in a very supportive work environment, but she worries about it. You know, she worries. What would the implications be if people at work knew or saw me have a seizure so that the full spectrum is there and how it impacts who she discloses to, and some of the decisions she makes about her personal and her professional life.
I think we know all the way to fight stigma is knowledge. There's so much misunderstanding about epilepsy and seizures. There's a lot of fear about it. And so the way that we fight stigma is through education, through empowerment, through being open, bringing it out of the shadows. So I, you know, I really appreciate a book like this, which is probably introducing some people to, you know, seizures for the first time.
And hopefully will help them be more compassionate, empathetic, when they have somebody in their life with epilepsy. But by the numbers they do, they just probably don't know it like you did.
And I guess I should add, you know, when we think about some of the stories that Sam shared, the character about really being bullied or excluded or othered as a child in particular, I hope if any of the listeners are experiencing that, you know, and I hope that your friend's daughter didn't really live that.
But I want them to know that that's not something they should accept. They have rights. There are resources. You know, there's lots of resources to help, whether it's, I need help educating my school, my classmates, my coworkers, I need advocacy. You're not alone. You know you are not alone. And you shouldn't feel alone.
Dr. Denise Millstine
That's so wonderful. One of the things, Katie, though, that's so difficult about epilepsy, is if you have aura and you know it's coming, then you can take some precautions to protect yourself, you know, sit down or get into a safe place or that kind of thing. But would you agree that one of the things that makes it so challenging is its unpredictable nature, that you can be aware of triggers, but also kind of live with this sense that a seizure just might come and you may not have been able to do anything with your lifestyle to prevent that from happening.
Dr. Katherine Noe
That's exactly right. And, you know, obviously the book struggles with those themes as well. As human beings, we all want to believe, you know, if I'm good, if I take care of myself, if I exercise, if I do all the things I'm supposed to, life is going to be great. But, you know, that's not the way it works, right? Things, bad things happen to great people. Everybody has their struggles and it is really hard.
That is, you're exactly right. With epilepsy, there are people that you know know exactly what their triggers are, and if they avoid them, they're seizure free. But there are also folks where on the best possible day when everything is good, a seizure may still happen at a, you know, at a time and place that would not be of their choosing.
And it is intellectually and emotionally really hard to say how am I going to live with this? The uncertainty of life, you know, the unpredictability of life is now real. And where do you get that sweet spot between taking appropriate precautions, modifying whatever it is you do in your life to keep yourself reasonably safe, but at the same time not just shutting down and saying, you know, I never do anything anymore.
I never leave the house. I don't do anything because you have to get out there, right? You have to take risks, you have to keep living. And I think the book kind of gets at that. Right? That's life. It's the good and the bad, the joy and the sorrow, and we have to take it all. That's what life is.
Katherine Center
Yeah. When my friend's daughter went off to college, my friend really had to struggle with that quite a bit. Right? Because her daughter just wanted to be in college, you know, she just wanted to go on adventures and pal around and, you know, go to parties and just be a kid. And of course, my friend was coming from the mom angle and was just like, for the love of God, just stay home and hydrate. Just hydrate, you know?
And there was a lot of struggle in there about trying to figure out how to let go a little bit, right, how to make room for unpredictability, how to kind of live with that sort of lack of control that we all have in lots of ways in our lives. But that was especially kind of on view at that moment.
Dr. Denise Millstine
Well, and you have that happen with Sam to some degree. Katherine. Right. She has this really traumatic early experience with epilepsy. Sort of gets on to this path, the seizures really quiet down for her. And then she's working for this school that she loves and essentially out of the blue has a really terrible seizure while driving her car. Causes an accident in a very public seizure, meaning many people knew about it because of the accident.
And you give her a mentor who is the character Max, who comes and brings her this bright, colorful hat and says, wear this to school tomorrow. And she's like, why would I wear that and be distracting? And here's because everybody will ask you about your hat, and it's like a switch flips for her that she realizes I can be this sort of dressed in gray doldrums, nobody look at me, person, or I can sparkle. I can shine, and I can give people, you know, joy, just from how I present myself to the world. And I loved how you chose to do that with her.
Katherine Center
Yeah, I had actually just read a super interesting book that I'll recommend to you called “Joyful” by Ingrid Fetell Lee. And it's a book about the esthetics of joy. And she talks like a lot about, like, what seeing bright colors does to your brain and how it impacts your emotions. Right. And she talks about all sorts of different components of the sort of aesthetic world and things that we encounter visually, and how those things impact our emotional experience of the world around us.
And so, yeah, I had just read that book and was very obsessed with it when I started writing “What You Wish For,” and I wanted to kind of bring that in, that new wisdom I had just acquired to kind of brighten up Sam's life.
Dr. Denise Millstine
Yeah, I love that. I read that book, but several years ago, and I the only thing I retain is that this multitude of colors and also rounded surfaces and plenty like it. You know, you're better with many, many polka dots than one dot on a page.
Katherine Center
That feeling of abundance. That's a great book. I lent it to a friend, and she wound up buying herself a pink sofa in response.
Dr. Denise Millstine
Katie, when Sam's seizures do come back and she's driving and she has that accident, she decides actually not to drive and also decides not to take medications for various reasons. Will you comment about those two huge topics, which is the issue of driving when somebody has epilepsy and then also that decision to take or not to take medications.
Dr. Katherine Noe
Sure. So let's start with driving. So every state in this country regulates driving for people with seizures and epilepsy. The requirements range from three months without a seizure to as long as a year. There is a safety issue. Like Sam, if you lose consciousness and you have an accident, you could get hurt. People around you could get hurt. So it's a public safety issue. And that's really the argument behind the regulatory requirement.
As an advocate for people with epilepsy, I will say this is to me also an example, though, of institutionalized stigma because there are many medical conditions that can impact somebody's ability to safely drive, and none of them are regulated to the extent that seizures are. So that's something for folks to think about and wrestle with.
It is hard when you're living in the United States. There are very few people that if you don't have access to a vehicle, it's not going to have an impact on your social life. Your ability to do things as simple as, how do you get groceries? How do you work? So this is a huge issue for people with epilepsy maintaining their independence and their quality of life.
There are a few states that actually require physicians to report people with seizures to the Department of Motor Vehicles. Fortunately, I don't live in one, but we know that that is a problem ethically and from a medical standpoint. in that it really discourages people from being open and honest with their medical providers about their seizures and getting the care that they need. So it is it is an issue.
I treat adults, you know, it's one thing when a child has a seizure once or twice a year because they're usually supervised, they're usually less out there by themselves. They're not driving. When you talk about an adult, even having one seizure, like Sam does in a year, that can impact your ability to drive. And although Sam was able to change her life in the book to accommodate using a bike for transportation, for most people that's not an option.
So when we talk about, you know, how to treat, how aggressively to treat, should we treat seizure free control to allow driving for adults is actually one of the number one drivers of our decision making.
It is always a shared conversation. Again, epilepsy, as I said, has many, many different faces from mild to severe. So when we talk about the risks and benefit of treatment, we're talking about how often are your seizures, what are your seizures like? What's the likelihood that you could injure yourself? Are you independent in your work, in your driving?
Sam in the story chooses not to treat. She kind of says, my seizures are not that frequent. She's probably not counting her auras, which are still seizures. I think probably many of us who are passionate readers or movie watchers or whatever, you have that moment in the story where you just want to reach out and tell the character, like, don't do that.
And, you know, I just I wish I wanted to say to Sam at several points, like, I know you had a bad experience with medication in the past, but things have changed. Find a different doctor, find a different medication. There's so many things that we can do to treat seizures. Even in the 20 years I've been in this business, so many more options. The majority of people do great on medication. Majority of people are seizure free on medication and feel good on it.
For those people where medicine doesn't work, you know, obviously for all folks, we talk about all the lifestyle things that were featured in this book. So working on your stress, taking care of yourself, being good about your sleep. Don't binge drink alcohol. Don't skip meals. Be careful with your diet. We referenced a little bit earlier in this conversation about diets for epilepsy, modified Atkins diet, ketogenic diet. Those are great choices for some people.
We have brain surgery for people who have disabling seizures not controlled on medication. We can often cure them with surgery. And we have now a number of devices, what we called neuromodulation, where we use electricity either directly applied to the brain or indirectly applied to the brain to treat seizures.
So there's so many things that we can do. And I think that's a real important message for folks is don't give up hope if you're not right, if you're not feeling good on your medication, if you're not seizure free or not controlled in a way that allows you to do the things you want to do, talk to your doctor. If your doctor's not working with you, find another doctor. Plenty of folks out there who can help you.
Dr. Denise Millstine
That's really inspiring. And Katherine, I feel like you do build this intention in Sam to do the things that Katie's just referenced. So we see her making time for meditation. She lives in a beautiful seaside place so she can walk on the beach. She prioritizes her sleep. She makes sure that she gets plenty of sleep and she doesn't drink any alcohol. So I think you've learned from your experience and your research that you know, these things are important to kind of limit the triggers. Correct?
Katherine Center
That's true. Although I wish I could give Sam, Katie's number and just get her to holler because I'm just listening to her. I'm like, Sam, needs to talk to this lady. I mean, it is so comforting to hear you talk about it because you talk about it, in a way that makes it clear there's lots and lots of ways to address it and to help and to make things better.
And I think at the time when I was talking to my friend, they were maybe at a point where they were feeling a little frazzled by it all. And that was really where the majority of my information came from. I did other research, but I wish I had known you back then. I think we could have delved even deeper into some of the ways to come up with some solutions.
Dr. Katherine Noe
It is very truthful though, again, what you wrote. You know, there are folks that their epilepsy journey may always seem relatively easy from the outside. It doesn't mean they're not impacted, you know, or they don't struggle. But, and there are others where their form of epilepsy is, it can be honestly catastrophic. Not everybody can we make seizure free. Some people, unfortunately, have many, many seizures every day. And they have other challenges around that.
But many people, it's somewhere in the in the middle, you know, their seasons of their epilepsy. And Sam certainly experienced that. There are times where they may be struggling with control despite doing everything right, and then they may have periods in which they're doing great. We fight for the good, the good stuff.
Katherine Center
Yeah.
Dr. Denise Millstine
Katie, I think there's another point I want to highlight in the story. So for listeners who haven't yet to read “What You Wish For,” it's actually a romance and we haven't even mentioned Duncan except very, very briefly. So I promise you that he has featured much more than Sam's epilepsy is in this story. We are just highlighting this plot thread.
But Katie, when Sam finally tells Duncan that she has epilepsy because she has an aura, she thinks she's going to have a generalized seizure. He says, okay, so and I'm paraphrasing, if that happens, I take her to the hospital and she says, nope, if you had a seizure, we'd go to the hospital. But it's normal for me. Will you just clarify that for somebody for whom that might be a surprise, that somebody with known epilepsy having a seizure doesn't necessarily need to be rushed to emergency care.
Dr. Katherine Noe
Yeah, I think that's true. For a first time, seizure never happened before, most folks are going to end up in the emergency department if they recognize at the moment that's what's going on. And that's important because there are some things that could be emergent that need to be addressed.
I think that's very different than the person who says, this is part of my life. I have seizures, whether it's once a month or several times a year. You know, I know what they are. I know how long they last. I know how to come out of it. I know how to manage them. My family knows how to manage it. And they can probably tell you, like hey you know Duncan, if I have a seizure, here's what I need you to do for me.
Some, you know, common first aid things. Make sure I'm safe, make sure nothing's going to fall over on me and make sure I'm on my side. Things you shouldn't do. Don't put anything in somebody's mouth. You know they're not going to choke on their tongue. That doesn't happen. Let them come out of it. Let them know, “You had a seizure, you're going to be okay.”
For those people, you know, as long as it's following their normal routine. It's really not necessary to call 911. And it actually is pretty stressful for folks when they're like, this is, you know, for better or worse, this is routine for us. But I had it in a public place and 100 people just called 911 and when the paramedics get here, I'm going to tell them I'm fine. I don't I'm going to talk to my doctor tomorrow. I'm okay.
I would say it's never wrong to call 911. So if you're not sure, if your gut just tells you this isn't right, it's never wrong to call 911. The paramedics know what to do. There are times when you really should call 911 when seizures are very prolonged. Often we'll say more than five minutes when they're occurring back-to-back, when somebody's not coming around.
And unfortunately, seizures can cause injury. So people can fall, they can break bones, they can dislocate their shoulder, they can burn themselves because they were cooking and around hot water in hot places like Houston, Texas, and Phoenix, Arizona, where we are in the summer when people fall onto hot pavement, it takes very little time for them to have a burn. So obviously if somebody has an injury, if the seizure is not stopping, those are absolutely reasons to activate the 911 system.
Dr. Denise Millstine
That's super helpful. Thank you so much.
Katherine, I wonder if you'll leave our listeners who have epilepsy or care about somebody with epilepsy with some parting advice.
Katherine Center
What Sam does in the book, which is really like we said before, to try to choose joy on purpose, is something I think we all can do. But I think doing that in the face of things you're struggling with is harder at times. You know, it's not something that I know that much about from firsthand experience, only from my friend and from research.
I have so much and respect for people who navigate those uncertain waters and figure out ways of managing things. But I always do think for all of us, it's a really good rule of thumb to try to acknowledge the hardship, but savor the joy as much as we can when it comes in life.
Dr. Denise Millstine
That's so beautiful. Thank you. Katie, any last advice for our listeners?
Dr. Katherine Noe
Yeah. Don't be afraid. The fear, the fear, the stigma. It can be much more disabling than the seizures themselves are. Anybody living with epilepsy you deserve the happy ending. Keep that in mind. Whether you're seizure free or not, on medication or not, life is still beautiful, right? You're going to have all, like you said, small moments of joy, big moments of joy.
We all have sorrow. If you are feeling alone, if you're feeling stigmatized, if you're feeling discriminated, please reach out for help. There's so much help available. Great doctors, Epilepsy Foundation of America's. You know there are lots of places to support you, so don't give up. You're not alone. And I love what you just said. Be joyful. Right? Be joyful.
Dr. Denise Millstine
I've been talking with Dr. Katherine Noe and Katherine Center about epilepsy and the book “What You Wish For.” Thank you both for being here with me.
Katherine Center
Thank you.
Dr. Katherine Noe
Thanks for having us.
Dr. Denise Millstine
“Read. Talk. Grow.” is a product of the Women's Health Center at Mayo Clinic. This episode was made possible by the generous support of Ken Stevens. Our producer is Lisa Speckhard Pasque and our recording engineer is Rick Andresen.
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