Episode 203: Under the Lights: A film about epilepsy – with Miles Levin

The episode transcript is below.

Carolyn Kiel: Welcome to Beyond 6 Seconds, the podcast that goes beyond the six second first impression to share the extraordinary stories of neurodivergent people. I’m your host, Carolyn Kiel.

Carolyn Kiel: My guest today is Miles Levin, a filmmaker and public speaker living with epilepsy. His short film, Under the Lights, has become a beacon for epilepsy representation in movies, leading to daily fan art and inspiring others to open up about their disabilities.

He’s now making the full length film of Under the Lights in an effort to create the single biggest epilepsy awareness campaign in history. Miles, welcome to the podcast.

Miles Levin: Thanks for having me.

Carolyn Kiel: I’m really excited to have you on the show and learn more about Under the Lights. So maybe tell me a little bit about the premise and what inspired you to make Under the Lights.

Miles Levin: Yeah. Well, first and foremost, I have epilepsy. And I’ve always had epilepsy and it’s affected my life in so, so many ways. And, and my parents and, you know, my circle. And I, a formative moment for me was I remember being asked by my epileptologist, that’s an epilepsy specialist who said, you know, “maybe you should get involved with the foundation and maybe you want to go to epilepsy camp. Maybe you wanna volunteer.” I said, “no, I don’t. Why would I spend another second, you know, surrounded by the thing that I like the least about myself? That doesn’t seem, that’s ridiculous.” Right? And of course I went. And I went back for seven years. And it was the most important experience of my entire life because I was face-to-face with people like me.

And the stories that my peers would tell me would, would be quotes like, “I have never made a friend before.” Or, you know, “my siblings, when my parents are away, they’re so fearful for my safety that they lock me in my room.” And now in the age of Instagram, you know, that was pre-Instagram, it’s, you know, everything’s being filmed. Kids will go home and find videos of them having seizures online. And how do you ever recover from something like that?

The unemployment rate is 50 percent! The suicide rate, five times the national average. So, i, over the next 10 years, I would end up in rooms talking about this. I would talk about camp and I would, I would talk about this stigma that I was becoming increasingly aware of, and everyone would nod. And it took me a little time to realize that everyone in the room at these events, they already know. You’re not educating anyone about anything. If you’re going to an epilepsy awareness event of any kind, it’s because you’re epilepsy aware. So, And then I also noticed that I’d go to events put on by all sorts of foundations, and they all were using the same tactics and I went, oh my goodness, we’re gonna be here in 20 years. This is bad. These events are awesome for fundraising. They’re awesome for, for a morale, but they are very poor for awareness.

So. why is it that we have a stigma in the first place? And I think, well, most people, when they think about epilepsy, they picture what they’ve seen in a hospital show or a horror movie, which is more than likely medically inaccurate. But that’s not the problem. The problem is that it’s a device placed in the narrative to scare people. And you know, EMTs will immediately assume that we’re on drugs or otherwise inebriated. It’s just, it creates all kinds of problems. So what if we had a point of reference that was about a person just like you and me, right? Just like you and me. Who’s, and, and we connect on that universal ground. It would do more for awareness if that was a really public touchstone, than you know, than we’re going to do with these same tactics in, in, in 10 years. And that’s kind of what happened with, with the film. It was pretty pretty amazing what that led to. And we, we will talk more I think about that.

Carolyn Kiel: Wow. Yeah. So, yeah. Tell me about the premise of the film.

Miles Levin: Yeah, so Under The Lights, which started as a short film as you mentioned, and now it’s becoming the full length movie, is about a boy with epilepsy who’s so desperate to feel like a regular kid, he goes to prom knowing that the lights will make him have a seizure. And I wrote this when I was, you know, at my worst. It was just so hard for me to sort of watch the world grow up without me and to do things that I would never be able to do without a second thought. And, you know, I had straight A’s in high school. I was a part of every club. I was, you know, the quote unquote overachiever. I mean, I worked so, so hard, and with the limitations that I have. And I felt like it doesn’t matter. It doesn’t matter how hard I try, I still can’t have the things I want. I can’t, I can’t be independent.

And so I wrote this story about this kid who wants to have a normal coming of age. And I think that a lot of people with disabilities have the fantasy, that flash moment in your head, where you ask yourself just how far you would go to do the quote unquote normal thing, whether that’s drive a car or get groceries on your own or go on a, a trip by yourself or whatever those things are. They feel sacred. And so that’s what the short was about. And it exploded. It was just meant to be this little thing that we can enjoy. And sure enough, there’s fan art every day. And then I dig into, well, who’s making the fan art? And this was the really magic thing, is that these, a lot of these people didn’t have epilepsy.

Carolyn Kiel: Wow.

Miles Levin: They were stunned. They were, they were excited about this idea and this concept. And so for the first time ever, epilepsy awareness is, is cool. You know what I mean?

Like, like people wanna engage with it because it’s, they suddenly are realizing like, “oh, I actually probably know someone who has this. Oh, oh my goodness. Oh what do I do if someone has a seizure in my class?” You know?

And, and it’s led to people coming out, as we use that phrase, coming out for the very first time. Programs have formed around this. What, people have made podcasts about disability awareness that didn’t exist before because they, they realized I didn’t get crucified for telling my story, so, you know, maybe they could too! You know, and that’s, that’s what I’m really proud of.

Carolyn Kiel: Yeah. I know as I was listening to some of the other interviews you’ve done, you talked about epilepsy, you know, everyone has that idea from, you know, as you said, hospital shows and horror shows of, you know, the stereotypes of what epilepsy is. But I think you had said at one point that sometimes epilepsy is the time between seizures, and that’s sort of where your life is lived. Which I think is not something that people think about. And I just, that was so fascinating that you said that. So, is that sort of incorporated into the film as well, kind of showing that life and that whole experience?

Miles Levin: Yeah yeah. [laughter] I must have said something cool there because it, it comes up.

Carolyn Kiel: It was cool!

Miles Levin: But I like that. But I say that in the epilepsy story, the seizures are just the punctuation. You know, there’s 40 kinds of seizures. It’s all different. Some of them are conscious. But, but for most, most people, the only time you’re not aware of your seizures or feeling the impact is when you’re actually having one. That’s the only time you’re not there for it. You know? So, the time in between, it’s being looked at differently. It’s being treated different, being treated differently. It’s being left out. It’s being, you know, unaccommodated, judged. That’s living with epilepsy. That’s living with epilepsy.

And the other thing that I like to say is that we talk so much about “the cure.” Well, there’s a few people who have a say in when or how that comes about, and I sure hope that that exists at some point. That would be lovely to be able to ease that for, you know, it’s just a lot of suffering.

However, there are two cures and in between now and the quote unquote cure, which could be tomorrow, it could be 40, 50 years from now, if ever, we’re living with epilepsy. And we can make that experience better today. You know, medication or not. The way that we treat each other is our choice, and that’s what Under the Lights has come to be about. And so to your question, the film is about a person. Right? And in fact, it’s about the caregiver. It’s about the person. It’s about the friend who is going through something invisible of their own that they would rather not talk about.

And, and the fact is we have all felt these same feelings, right? We, we all feel these same feelings. We’ve all felt judgment, we’ve all felt left out. It, we just have to connect on that universal common ground to just build a better world. I think it’s interesting that when someone goes through a divorce or is in a car accident or loses a sibling or, or something really awful like that, we respond generally, generally we respond with a certain amount of empathy of, wow, that must be hard. Right? I, I can’t imagine what that must be like. Right? But when, when it’s a disability in question, the immediate reaction is for some reason different, even though that it’s, it’s a, it’s a life affecting challenge, possibly like any other. But because that challenge is medical, we treat it differently. And that’s something that I can’t wrap my mind around.

But I do think that it can be addressed and, and we can prove it because movies and television when done properly, when honoring a person’s story, you know, with kindness, has done a lot to heal these understandings with other communities. So I just thought, why not mine?

Carolyn Kiel: Yeah. Absolutely. My guests and I have talked on the show before about the importance of authentic representation of disability in the media, whether that’s film or books or TV. And that’s something that your film is, is really striving for that authentic representation.

And it doesn’t seem like there’s a lot of that representation in film and media for epilepsy out there available right now. So this is really, really important.

Can you kind of tell me a little bit about the, the impact and maybe expound on the importance of authentic representation of epilepsy in film like yours?

Miles Levin: Yeah, I mean, I, every community, every minority group, every subsect is gonna make their own judgment on, on authenticity and what that means for them. But on a baseline level, what that means to me is that the performance is reflective of the real thing. That when I’m telling a story, I am talking about real life. When a performer performs it, they’re showing me real life. You know, it’s important for me not to record a performer, unless they’re giving me something so close to my real life experience that I, I feel like I’m watching my life unfold.

Right? That’s, that’s authentic to me. And something where my perspective may differ with others, because this is a really hot topic in the disability world right now, is what is authentic representation. And a lot of groups have decided, you know, if I’m gonna see a movie about someone like me, that person better actually be just like me, right? They, they should have my diagnosis and so on.

I take a different perspective only for my specific community at this point in time. And I cannot speak for what other communities prefer. But the core problem facing my community right now is that we don’t have advocates who aren’t just like us. There are, there are a few people who stand up for us and help us carry the burden who do not have epilepsy or are not caregivers themselves. But we don’t have very many, we don’t have a lot of allies. And so I think film and directing is really interesting because my job as a director is to take someone who doesn’t understand the, the, the character yet, whether they have the disability or not is sort of irrelevant, and to put them in in the shoes and to say, I wanna hold your hand and I want, I want you to live and breathe this character. Right? I’m gonna, for lack of a much better phrase, I’m gonna make you have epilepsy, right? You’re gonna go to school, you’re gonna, you are going to be embedded in, in my community. You’re gonna know my brothers and sisters, like your brothers and sisters, and you’re going to understand this as well as any caregiver would before you do this job.

And if I’m good at that, if I am a good director, what happens is that that person walks away from this experience intimately understanding what it’s like to live as a person with epilepsy, and then that person carries for the rest of their life a sense that this is important.

And that’s what happened with a short film. Pearce Joza does not have epilepsy. I chose him because together we could craft a performance where I felt like I was watching footage of myself. And, and then he goes on to, to serve the epilepsy community. And that’s a voice that we didn’t have before.

There’s, there’s a real person, this is a real thing. There’s a real person who is homeless, who, who crossed paths with him, had epilepsy, had been kicked out of their home ’cause their parent didn’t wanna deal with them. And because Pearce had been a part of this project, he knew where to find that person resources. He knew all about what those circumstances were like. And that kid, you know, found what they needed.

So the set has to be a, a mix of people who already understand and people who are uninitiated. Because if every single person on the set is exactly like me, then I am creating the environment that we already have, which is the room full of people who are showing up in solidarity to support something they believe in, but have nothing to learn.

Carolyn Kiel: Mm-hmm.

Miles Levin: And so my set is going to be a collaboration more than a meetup, if you will.

Carolyn Kiel: Yeah. And your set’s really building real allies. And not just people who are educated, but who are also coming out and actively helping the community after their experiences.

Miles Levin: And and that’s what will happen with the, I mean the feature cast is pretty pretty remarkable. And it’s people who have direct connections to this cause, who it affects their every single day life. And there’s people who don’t, but want to be. And that’s the real magic of this movement is that through Under the Lights, there are so many people who are saying, epilepsy, what’s that? How can I help? And I just, I’m very proud of that.

Carolyn Kiel: That’s awesome. And so the short film of Under the Lights, which is out now, I’ll link it in the show notes so that everyone can go watch it. I’ve watched it. It’s incredible. That came out in 2022. And it has two really big name actors, the two leads in it are incredible. So I’d love to know, how did you select the cast for the short film?

Miles Levin: Yeah. So it started actually with Alyssa, the female lead, in the short. She used to live in my area. I was, you know, asking around for who the real, real talented folks were around here in Northern California. And so she was basically a friend of a friend, and I had never heard of her. And I looked her up and I went, oh my goodness. It’s like, it’s like I wrote this for her, like it’s exactly what I imagined.

And then I did local auditions and was really struggling to find someone that I felt would, I mean, it’s very sensitive. I’m putting my, I’m putting up my community in a person’s hands, right? And so I asked Alyssa, I said, do you know anyone who’s exceptionally talented in the following areas and is a fit for this? And she put forward Pearce and I auditioned him like a thousand times to be sure. And I was just really, really lucky. Really, really lucky that he said yes.

Carolyn Kiel: Yeah, that’s awesome. So the main leads we’re talking about, Pearce Joza, who you talked about before is the main lead in the film. And then Alyssa Jirrels is the female lead in the film. And they’re both, I think they’ve both been actors in, in Disney shows and they, they have other credits to their name as well. So it’s really exciting to see them involved with this. Really, really cool.

Miles Levin: Yeah. Alyssa was just in Fatal Attraction was her, her last credit.

Yeah. So, so they’ll both be returning in the feature. Pearce in the same role. Alyssa will actually play a different role which I’m really excited about. And, which is an odd, an odd move when you move from short to feature, but it’s a, it’s a really cool choice.

So and then, so many other really cool names, which people can easily dig up. We got a recent Golden Globe winner, I’ll say that, but I won’t say their names right here.

Carolyn Kiel: Very cool. so. You know, you talked about on set having people, you know, people who have lived experience with epilepsy, people who are aware of it, and some people who maybe are learning more about it for the first time. But as a director, what was it like for you to direct a film like this that’s so close to your own experience?

Miles Levin: It, it’s really, really spooky. Because, you know, you write something and you, you write until it makes you cry. And then you know that it’s, it’s, it’s that personal. You, you write until it’s too personal and then you put it in someone’s hands and you say, I’m trusting you with this. And then you work on it and you collaborate. And watching Pearce perform the most sensitive parts of the short, I mean, the whole room was weeping. And, and that was really magical to me because, you know, I’m weeping because it’s reflective of my real life. But if the camera department’s weeping, that’s a really good sign because it means that it’s speaking to something universal about them as well. And. It’s just a really, really magical experience. I know that the feature will be pretty brutal that way because there are so many moments like that, you know,

Carolyn Kiel: Yeah.

Miles Levin: it, it, it will be tough.

Carolyn Kiel: Yeah, absolutely. And you alluded to this earlier in the conversation, that the short film has already gotten a really great and passionate response. Yeah, tell me more about the response to the short film that you’ve gotten so far from either people with epilepsy or people who are just learning about it for the first time.

Miles Levin: Yeah. I mean, I didn’t know what to expect putting it out there. I mean, the internet can be really awful. You know, the internet can be so mean and, and so I fully expected to just have people want to tear me to shreds, and it didn’t happen. It just didn’t happen. The epilepsy community so embraced Pearce. If I ever get a negative comment, it’s usually, you know, from somebody who misunderstood something and then you, you pop in there and they go, “oh, actually that’s great!” You know? So it’s really remarkable how much the epilepsy community is united behind this.

But, but then, you know, you see the fan art, you see, I get called on these zoom calls where people wanna come out to their, their friends and family about their epilepsy and, by showing the short and choosing not to have to explain anything. It’s remarkable.

And so as a filmmaker that’s really cool, but I really feel like this has become something so much bigger than me, and that’s the real magic of it, is that it’s, it’s not really a Miles Levin thing. It’s something that I just sort of get to be in the room for, and it belongs to everyone else to do what they will with it. And it, it, it lets these epilepsy foundations now, you know, their support groups will double in attendance on movie night when they show it. You know, they’ll raise more money when they show the short. They’ll, you know, they’ll get people more interested in seizure first aid. All of these things are their idea because now they have this tool in their tool belt that gets people excited to show up. And so none of that’s my doing. They get credit for all of that. I just sort of get to be here for it. And that’s, that’s really the honor. And now, and I also, I get to know my community better. I get to be an active participant in my community because of this. So I’m really the lucky one.

Carolyn Kiel: And has the Epilepsy Foundation been a partner or a supporter as well throughout this?

Miles Levin: Oh, for sure. Yeah. And there are so many epilepsy foundations. I’ve come to know most of them in the country and even throughout the world now. I know a foundation in Italy. I just connected with one in Argentina over this. It’s awesome. It’s so, so awesome. It’s been translated into different languages. There was a fan fiction in Portuguese at one point.

Carolyn Kiel: Wow.

Miles Levin: Yeah.

Yeah. Really, really cool. Pretty, pretty good for a 10 minute short shot in my friend’s garage, you know? Not, not bad.

Carolyn Kiel: Yeah. Well, that’s great. So right now you’re in the process of raising funds to make the full length movie. So tell me about what that’s been like.

Miles Levin: Yeah. Oh, fundraising’s brutal. They, they always warn you when you, when you learn about filmmaking, that it’s, it’s gonna be hard and there’s no manual for it, but Oh, wow! But, we’re, we are currently raising just that last sliver, ’cause we want to shoot in March. That’s what we’re, we’re scheduled to shoot in March, as of this January the 10th. So, at, at the time of this recording.

So yeah, so we’re raising funds on SeedAndSpark.com where people can get rewards and honor loved ones in the credits and all kinds of wonderful things like that. You know, signed stuff from cast members and whatnot. And it’s really cool to be able to turn to the fans and be able to say, we, we want you to be a part of this. You know, thanks for believing in this, and, you know, have it continue to be something that sort of fans have ownership over. And we’re getting close, but, but for anyone who’s interested, you could be the reason why we’re successful, so I really appreciate people checking that out.

Carolyn Kiel: Yeah. And you know, we’ll put that link in the show notes as well to your fundraising campaign because people can donate and they can get really cool incentives depending on how much they donate.

Miles Levin: Yeah, there’s, there’s, there’s signed posters and there’s sort of like private behind the scenes and there’s, you know, on the upper end, you know, honoring loved ones in the credits and even visiting set is on there. So we just, I’m just really, really thankful.

Carolyn Kiel: Yeah. So then the end goal is to really have this released as a full like 90 minute feature film.

Miles Levin: Yeah. Oh yeah. No, this is, that’s where this is headed. No doubt. I mean, this is, this is destined to be in your living room on a major streaming service. That’s what’s going to happen. That’s my promise from the beginning is the largest, most impactful epilepsy awareness campaign of all time. And that’s kind of a bold statement. And, and I’ve always sort of in the back of my mind, go, man, when I’m talking to epilepsy groups, I would hate for someone to go, oh wow, you’re diminishing my work. But no, they all turn around and they’re all just like, yeah, Miles, you’re, you’re totally right. You know, like with this one, with this one project, we could reach 10 million people. You know, this will last forever! And, you know, a lot of awareness efforts last a day. And it belongs to the world at that point.

So, man, what a journey, you know, going from, I have no interest in talking about this, to this is what I do almost professionally now, is talk about my condition.

Carolyn Kiel: Wow. Especially since, as you said, there’s such still a stigma around epilepsy. So it is something that can be hard to talk about, but it sounds like the work and especially your film is going to make already is making it easier for people to come out and talk about it more openly with their friends and family and everyone else.

Miles Levin: That’s the hope. And you know, like I’m not gonna end stigma, but other people will, you know? And my hope is that it happens with a conversation in their living room, meaning like, watching the movie. People watch the short and they immediately go, “I didn’t think about this, but my cousin has that. I didn’t think about this, but when I was a kid, my neighbor had that.” And they realized that it’s everywhere. The only reason epilepsy isn’t obvious and everywhere is just because we don’t talk about it. One in 26 people will be diagnosed in their lifetime. That’s one in 26 people. So if you think about a movie theater, that’s one person in every single row.

Carolyn Kiel: Yeah.

Miles Levin: it’s wild.

Carolyn Kiel: Wow. Yeah. Such a huge impact and just bringing in and educating people, as you said, outside of the allies that you already have supporting epilepsy awareness, but just educating society in general is so important and Yeah. really, really exciting.

Miles Levin: Yeah. Thank you. Yeah. And what will happen is that then, you know, another filmmaker will decide that it’s time to share their story. And I think with three to five movies of this scale, we’ll have conquered this thing. We’ll be able to move past this. So I just, I get to be somewhere in that mix and that’s pretty cool. That’s pretty fine by me.

Carolyn Kiel: Yeah. Well, awesome. Yeah. So I definitely want to encourage all of my listeners to go and watch the 10 minute short of Under the Lights. Again, I’ll put links in the show notes. And definitely go and support the fundraising at Seed and Spark. Miles, when does that, when does that fundraising campaign end?

Miles Levin: Ends at the last day of January, January 30th.

Carolyn Kiel: Okay. All right. So you still have a few days, but this will air in January, so you will have time to go and go there, donate, check out the really awesome incentives that you can get related to the film for your donation. And, yeah, just encourage everyone to be a part of and, and help support this really cool initiative. Really important awareness.

Miles Levin: Thank you so much.

Carolyn Kiel: Yeah. Yeah. Well, I guess a closing question I have for you, a general one, is that like, what kind of impact do you want Under the Lights to have on epilepsy awareness?

Miles Levin: Well I, I, if I get what I want, it’s gonna be a green light for people to share their own stories and create a domino effect, which we’ve seen sort of in a microcosm with the short. And, I want I want enough conversations around epilepsy to be inspired by this that a kid old enough to go to camp, right, to bring it all the way back around, doesn’t ever utter the words, “I’ve never made a friend before.” And I really think that that is very achievable. I think that that is very, very achievable and that that is a cure that I can work on.

Carolyn Kiel: That’s awesome. Yeah. Well, thanks so much, Miles, for being on my podcast and sharing your story and talking about Under the Lights. Really excited to see it go from its current short film status to a full length motion picture. And yeah, we’ll definitely be there watching when that comes out. So thank you again for the work that you do.

Miles Levin: Thank you very, very much. This was a lot of fun.

Carolyn Kiel: Thanks for listening to Beyond 6 Seconds. Please help me spread the word about this podcast. Share it with a friend, give it a shout out on your social media, or write a review on Apple Podcasts or your favorite podcast player. You can find all of my episodes and sign up for my free newsletter at beyond6seconds.net. Until next time.