Landis Wiedner: Leading Voice in Advancement of Epilepsy Research Discusses Latest Treatments for Those Living with Epilepsy

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Welcome to Disability Matters with your host Joyce Bender. All comments, views, and opinions expressed on the show are solely those of the host, guest, and callers. Now the host of Disability Matters, here's Joyce Bender.

Hey everyone, welcome to the show. This is Joyce Bender on Disability Matters. And you know what? I'm going to save it, but wait till you hear our guest today. She is a dynamo. But I have to start by going over a few things. First of all, as you all know, I focus on the competitive employment of people with disabilities at Bender Consulting Services. Right now, sadly, many people with disabilities have lost employment and are looking. So make sure you tell everyone to go to benderconsult.com because we work in STEM, healthcare, and other business disciplines. But you've got to reach out to everyone. One way you could do that is share this show because everyone matters. And all of you matter. Oh my goodness. I have the greatest listeners anywhere. Look how long you've been with me. 22 years. Amazing. That is amazing. And at the same time, I have great listeners around the world and from 73 countries with listeners. You know, from Australia to Russia. Germany is one of the top listening countries. How about that? So Germany, my mother was half German. So good for you, Germany. And you know, I always say, I don't care if you're in some not well-known African country. Or Saudi Arabia, which is very well known, of course. But no matter where you are, even if you're one person, one person can make a difference because you could tell other people, hey, go to listen English listening venues. Because, you know, we have to do around the world, people with disabilities, they are all my brothers and sisters, and we have to encourage everyone every day. So one person, one person can make a difference. And Yoshiko, Yoshiko Dart, shout out to you, Yoshiko. You mean so much to all of us throughout the world. As a matter of fact, when I was in Japan, I went to this disability rights meeting and there is on the wall Justin Dart and Yoshiko Dart. And of course, Yoshiko is the widow of the late, great Justin Dart, phenomenal disability rights leader. And I get so upset that our schools, we don't do enough talking about the education of our civil rights history. That would be people with disabilities. So that's why Yoshiko shout out on every show. Plus, of course, I love Yoshiko. And HiMark, thank you so much. HiMark has been the sponsor of this show, lead sponsor, for many, many years. What a great company they are. Thank you so much, HiMark. And before I get going, I have to give Susan a special shout out. And Landis will really love this, but she called to thank me about this national plan because her son lives with epilepsy and she feels that there isn't enough collective advocacy. So shout out to you. And boy, you're going to love our show because we have a really sought-after speaker and advocate who is my co-chair. Of the National Plan for Epilepsy and has her own podcast. So this is like so easy for her. Unlike people that call me and say, oh my God, I've never been on a podcast before. Well, she has a podcast. She is the premier podcaster, won awards, fantastic, and I'll let her talk about that in a moment. But we have something in common. We have many things in common. We both have a podcast. We're both on the National Plan for Epilepsy, and we've both got the firepower. Because when you have epilepsy, you have all these neurons firing off. So I always tell people, oh, that fits me. Firepower. She has firepower. And with that, Landis, welcome to the show.

Oh, thanks, Joyce. I am so stoked to be here, but I gotta tell you, being on the other side, I am a little nervous. I'm like, usually I ask the questions, like now I have to answer them today. This is— and with Joyce, the OG, OG podcaster, so you will be just awesome.

As usual. And here's what happens, why I ask everyone to tell their story, like where they grew up and what their journey was, is because listeners in the United States and around the world— wow, that person was so great, I wish I knew more about them. So Landis, let's hear your story.

Yeah, I mean, so I grew up, um, just outside Chicago in the suburbs, and now I live in Chicago proper, and I have for a long time, and I absolutely love— I love this city so much. Um, I tried to find— because I feel like it's so boring to grow up and then live in the same area, so I tried to find another place to live, uh, like when I was like 27, 28, and I do extended stays like in LA or New York or Austin, and I just— I was like, Chicago just has my heart. It's just like the best city, and if we had LA weather, I wouldn't be be able to afford it. So I'm just glad for those Februarys when it makes Chicago living affordable. So yeah, I mean, my story with epilepsy didn't begin in my childhood. I was actually diagnosed with a brain tumor when I was 32, and then it needed to be removed. It was a a little bit of brain cancer. And then 6 weeks later, I developed epileptic seizures and was diagnosed with epilepsy. So there's like a very, in that way, I'm lucky that there is a very clear cause and effect to my epilepsy, where a lot of people who are diagnosed as adults, they don't ever find out why this happened, or even as children, why this happened, you know? But I, and that's where I do feel like a little bit fortunate because it's like, okay, it was from the surgery. That ultimately helped me, but also caused epilepsy, which I later learned is like very common. And I did not know that. Not that I would've changed my mind about the surgery. I still would've done it anyway. But it is just a very common thing for after a brain tumor resection or craniotomy or something for people to develop epilepsy. So I always say like, I'm still a newbie in this space because I've lived much longer without it than with it. And it's just like, I keep learning more and more. And I always say, like, I will be the ignorant one at the party and ask the questions because I don't know still a lot about it. Because, you know, as you know, Joyce Bender, epilepsy is so individual. And there's, you know, I just had a doctor on my podcast last week and she said it best. She said, no two seizures are the same, but no two seizures in the same patient are the same either. And I loved that and appreciated that because I think just acknowledging that everything is different, even within ourselves with epilepsy, and there's no— and unfortunately that does create a guessing game, but it kind of adds validation to our experience, in my opinion.

Oh, that is so true because I had an aura all the time. Now, this is when I didn't know that it was epilepsy because it was misdiagnosed. But when I had that almost fatal seizure at the movie theater, no aura, even though I didn't know what aura meant. You know, I would get this terrible feeling in my head and then I would know, no, no, that thing's going to happen. So to your point, It's different. It's all— and can change the type of seizure, you know, that you have. I say, thank God you're okay from the brain tumor.

Oh, thank— yes. I mean, uh, that is something I'm also so fortunate. I mean, I just had a follow-up appointment with my neurosurgeon like a month ago, and he's like, I don't think you ever need to come back, which is like the best news you could ever get, you know. Um, so it's like, it's one of those things where I, I do acknowledge like, yeah, having a brain tumor is terrible, having brain surgery is terrible. However, like within those spectrums, I, I am very fortunate in the sense where, um, I don't have to worry about this being a recurring thing. Not that it's not a possibility, but, um, it's just something that I don't, I don't need to be worried about.

How did I not think of this when I say we have a lot in common. Both have epilepsy, both podcasters, both on the National Plan for— and we both had brain surgery. There you go, girl.

We are soul sisters. We are so every way possible.

And you know what, if you knew this most beautiful woman who is so kind— I don't know if I've ever told you this, but Even before we met, all these people with— well, do you know Landis? Landis would be a great co-chair. So, oh yes, yes, many people on that committee. So, you know, you have a great reputation, and it was a blessing to me to meet you and you be my co-chair. So now Hey, I can have you on every so often and we can be together with a guest.

I love that. Yeah, 100%. Yeah.

Let's hear about that incredible podcast. What is the name and what is the show all about? And when is it on?

Of course. Okay. Yeah, I'll give all the details. So the podcast is called What the F? Spelled like, "What the EF," as in the colloquialism that I won't say on the show, but I think we all know what it means. And it's a space to talk about adulting with epilepsy because when I was diagnosed as an adult, I searched for some touchstone, some resource, something to just try and connect to anyone that had epilepsy. And there were some things out there, and I think a lot's changed in the last like 5 years. But at that time, there was— it felt like a desert. It felt like I was the only person in the world who had epilepsy as an adult. And I felt like I was just supposed to have it all together. And I started to learn the more I became aware of epilepsy and talked to more people that I was not alone in this. I also, and this is really This is a sad story and trigger warning, talking about suicide here, but my late cousin Jimmy had epilepsy and he took his own life because seizures took over his. And this was before I was diagnosed. And it was 2 years before. And it was obviously devastating, you know? And then, you know, we still miss him all the time. He was the funniest, smartest dude. And I was 6 months into my diagnosis. And within that time, I was having seizures probably like 3 or 4 times a week. And I, all of a sudden, I'll never forget this moment. I just had this crystallizing moment where I was like, I know why Jimmy did what he did. I completely understand. And, um, that was like a validating and terrifying sort of realization. And I think it's something I'm very open talking about, like suicide ideation, suicide ideality, and all those things that sometimes come with epilepsy. But as soon as I realized that I understood Jim, I knew there are other people out there that felt the same way. And so I wanted to create a free and accessible resource for people to know that they're not alone, to hear other people's stories they might relate to, to maybe get other tips from people, and also laugh. Because for me, it's my favorite coping mechanism. I love laughing through, as a, you know, just a way to cope with some things because like, for me, some of the things that, you know, come with epilepsy are funny. You know, like I always joke about like, I'm the early bird diner because, you know, I'm going to bed at, you know, 8:00 PM, so I'm eating at 4:00. And, you know, just like little stuff like that. And it's so amazing because I have guests on who all have their own epilepsy story and epilepsy journey. And sometimes I think that the topic's going to be really heavy. And one time in the studio, I made sure we had tissues out because we had a couple coming in to talk about their journey with family planning and how they ultimately couldn't have a child due to epilepsy. And I was like, we got to have tissues. We gotta just make sure everyone's ready. This is gonna be very emotional. I don't think I've ever laughed so hard during an episode. And that's largely because of them. You know, that's not, I'm not taking any credit here, but it's just that I wanted to create a space where we could talk about our stuff, talk serious about our stuff, but also have, you know, laugh in some of the sadness of it because I can't remember who said this, They said, "Comedy is tragedy plus time." And I really try to lean into that. And going back to Jimmy, he was 36 when he died. And I think when I was creating this, I was like, I want to create the thing I wish Jimmy had, the touchstone I wish he had had when he was alive, and so that he maybe could have felt something. And that's why I put this out there. And I have chills talking about it because I just love doing it so much. And I love other people coming on to share their stories. I love having that moment of connection and then people reaching out and saying, "Oh my gosh, I feel so seen. I thought I was crazy," which I think we all go through that all the time with epilepsy. We think we're crazy at one point or another. And so it's just, I wanted to be a touchstone, a laugh, and a huge point a validation for people and a resource to feel not alone and maybe laugh along the way too.

That is so awesome. You know, I am so sorry to hear about your cousin. Thank you. But as you said, sadly, depression is a morbidity that goes with epilepsy, but even without that, it changes someone's life. I mean, for example, you're a high school student, you're going to school, you have a seizure in the hall. That's it. You are made fun of. People are saying you're a freak. And that stays with you. You know what I mean?

I mean, Not personally, because again, I didn't have to go through this as a teenager. And I always say, I don't think I could have. I don't think I could have done school with epilepsy. But as a former teacher, I used to teach before I had epilepsy. My heart just breaks thinking of that. And I get a little, I get angry towards teachers. About this because they're the adults in the room. You know, kids are mean. Kids are going to be mean. I'm not excusing the behavior, but I am not like allowing the teachers and the administration to just let this happen. And that's what really, because they're the responsible ones. You know, whenever I love teaching, it was so much fun. I taught high school English in Chicago and I absolutely adored it. And I always say the adults ruined it. The kids did not. I just burnt out from, you know, uh, poor administrations, quite frankly. And so people, you know, teachers would say like, can you believe this kid did this? Well, I'm like, yeah, he's 14. It's a kid. They're allowed to be stupid. They're allowed to do those things. You know, we're the ones that have to be accountable. And so again, definitely not excusing anyone bullying, but what happens after that? What are the ramifications? What are the talks that are happening? What is the intervention? That's the thing. And then also the prevention of it. And that's where it— this is where a national plan comes in because it needs to be top-down. We need to have— it's so ridiculous that in Illinois anyway, you're mandated to learn CPR in 8th grade, but you know nothing about a seizure. And you're more likely to know someone and see someone have a seizure than need to perform CPR. So I think there's, like, a lot of, you know, it needs to come from the top that this is a requirement, but also, like, as you and I have talked about before, just, like, it needs to be robust. It can't just be, like, something glossed over. And back to your original question, my heart just breaks for those kids. And, you know, If there was any, and I, I've thought about this too, I'm like, what, you know, if I were in that situation, I don't know what I would do. But if there is an adult in that building, whether it's, whether even if they're not your teacher or even if they're not your guidance counselor, but you're like, I know I can trust that person. You know, that might be a way to get some support in the system because there are really good teachers. There are really good counselors. There's also mediocre and bad ones, but, you know, you can find— maybe find an adult to get on your side, you know? But I don't know. I don't have the answer for that, and it just— it's just so sad, the story. I've had so many guests come on and share horrifying stories, and you just are like, "Ah, why? Why?" You know? And it comes down to ignorance. It really comes down to not knowing what a seizure is or how to respond to it or how serious it is. And so I just think we need such a more broad awareness and understanding of what's going on in order to combat the bullying, the stigma, the discrimination, and everything.

Oh, I agree with you. And I will add to that the parents. Yeah, I spoke at this a large conference, and there were all these young people, mid-school, middle school level, and their parents were also there, but the parents were not seated with them. They were in another location. And I said, this is a message for the parents, okay? Don't do this. Shh, don't tell anyone. Because if you do this, shh, don't tell anyone, what are you really saying? You're saying it's bad. You should be ashamed. Don't do that because you should be saying you've got the firepower. Yeah, you're awesome. Yeah, that's what you should be saying. Yeah. And you'll just add to the stigma. You know, so many people, they'll say, don't tell anyone, don't tell anyone. When you're at school, I wouldn't tell anyone about this. And again, why? Because you're meaning it's bad. What do you think about that?

Yeah, well, I just think of how that extends into adulthood too, you know, because, um, for me, one of the biggest hurdles was with dating. And, and it's something that it comes up all the time on the podcast, it comes up all the time, and just regular conversations, and the biggest question is, when do I tell a date I have epilepsy? And that is something that is just, it's just so broad because we've carried this weight. And everyone goes on a date feeling like, not everyone, but most people go on a date and they feel like they have baggage, right? They're like, ah, like, I don't know if they'll put up with X, Y, and Z parts about me. But I was single when I was diagnosed with epilepsy. And I'm going to tell you that baggage load felt so much heavier when I had epilepsy. And at first I wouldn't tell anyone. I think I, for the first year and a half of dating, I would just make up lies about why I wasn't drinking, about why I need to go to bed early. I just was like, my plan was, Joyce Bender, this is hilarious. My plan was I'll get him to fall in love with me. And then I'll tell him that I have epilepsy. Like, I literally thought that would work. Like, and so it's just like, you know, but it also extends into the workplace too. When do I tell my boss? Can I tell my boss? Some people don't feel comfortable, you know, and it's understandable because you hear, you know, you hear horror stories about kids being bullied. You know, at school. And I've also heard horror stories about adults being bullied in their workplace for epilepsy. And it's like, what, what, what is this? This is like, you know, it makes no sense. And it's so, um, it's such grotesque behavior, uh, that I, I have like a very low tolerance for it. But I do understand why then we self stigmatize, you know, like, like when we're, um, you know, on a date, on a job interview, at the workplace, um, you know, on the bus, whatever it is, it like makes sense because going back to your shh from the beginning, you know, if that's the messaging you're receiving, that's really hard to undo. And it takes, it takes a lot of, I mean, for me it took a lot of therapy and a lot of bad dates for me to finally undo that. But I think it's also like we have to do the work as well as people living with epilepsy to destigmatize ourselves in order to help destigmatize epilepsy.

Yeah. And if you just joined us, we are talking to Landis Joyce Bender, who is a sought-after speaker, advocate, podcaster, big-time podcaster. I, I forgot, when is your show on?

Oh, I forgot to say that. Yeah, so it runs in seasons. Um, I just wrapped up season 9. Um, so it's, um, 2 months on, 2 months off. So season 9 just finished, September and October, and then we start again January and February.

So, and what time of the day?

On, uh, so it— every episode drops on Tuesdays wherever you stream: Apple, Spotify, uh, YouTube, um, Audible, all of the podcast streaming services. So, um, yeah, it drops Tuesday morning. Um, but I think—

here we go again, the same day, our podcast.

I know, and my season just ended last week. And now I'm on a podcast and I'm like, this is like a dream come true. I just finished last season. Now I get to be on Joyce Bender's. Yeah.

Isn't that something, though? Yeah, that is amazing. Yeah. Well, what is the end of your story with the not telling anyone you had epilepsy?

Oh, yeah. So then it became a way to weed men out.

That's what I was going to say. You should have thought that before. That was a good way.

Yeah, yeah, yeah. And you know, and now— and I got married, um, oh my God, almost 2 years ago. And when I met my husband, I told him on the first date, and, um, he reacted like I had just told him another part about myself, you know. It wasn't like he didn't blow it off, but he didn't, um, get scared. He just like took it in as another piece, you know. And I was so shocked. I actually just got chills thinking about it. I was so shocked because I was like, oh my gosh, like, this is just, this is a thing for him. Like, it's a big deal because it affects me, but it's not a big deal in how he thinks about me. And that's— and, and that's where I feel like is the, the good spot, is where they acknowledge what it is but also, you know, don't— this doesn't change their feelings about you.

Well, you know, um, yeah, that I want to also say about parents. There was this one parent And she uninvited this little girl to a slumber party when she found out she had epilepsy at the age of 11. She called her mother and said it would be best she does not come. I say shame on you.

Mm-hmm.

That's, you know, I mean, talk about doing something to add to a feeling of worthlessness or possibly, as you said, suicidal ideation. It could be you. It could be another. It could be your child. Yeah. Remember what Landa said. This can happen. Look at both of us. We're not born— see, it's another one here. Both of us were not born with epilepsy. Neither one. Right. I had an accident. You had brain surgery. Anyone. That's why I tell people all the time, you are the temporarily able-bodied. Something could happen to you at any time. And so don't do that. Don't, don't do that. And I'm like you. It's so funny, when I spoke in South Korea—

oh wait, can we just pause for a second? Yeah, because that's just such a cool way to start a sentence. When I spoke in South Korea, and you say it so casually, and Joyce, you're so amazing.

Wow.

And I just love that about you. I just— I'm so sorry, I didn't mean to interrupt you, but I just had to be like Can we just pause and can I fangirl over you for just another second?

My fangirl?

Yes.

Why didn't you choose anyone else? Okay. I went into this room because I said, "I want to meet people with epilepsy." And I went into this room and there were only like 2 people. The rest were all doctors and nurses. And when I walked in, this is what the doctor said to me, the neurologist. Whatever you do, don't say the word epilepsy. Don't say that. I said, oh, what do you say? Cerebral electric disorder. I said, really? That sounds like Frankenstein. I would not want to have to say that either. Well, no, just don't say epilepsy. So I march up front and of course, what do I say? I'm Joyce Bender and I'm living with epilepsy and I'm not ashamed. And by the way, oh my goodness, how did I forget to tell you? This is National Epilepsy Month.

I know, we're kicking it off together. It's amazing.

I love it. National Epilepsy Month. Kick off with two firecracker girls with firepower, right? Absolutely. Well, you told me about some of your shows. And even shows where they made you laugh. But tell us about some of the guests. And I know this is going to be hard— what is your favorite show?

Oh yeah, I, I don't know. And it's so— this sounds so cheesy, but I was looking through, I was doing like inventory and looking through trying to figure out, you know, what, what. And I'm like, God, I've had just the most amazing people on.

Um, well, how about this? How about if you tell me a few of your favorite shows?

How about that? Okay, I'll— thank you. I need that wiggle room, Joyce. You know, you know me too well. Um, so one of them was another fangirl moment when I had Tony Coelho on. And yeah, I couldn't believe it was happening, you know. And it was such a great episode. Um, and I just, you know, and he was so, and he, he fit the guest profile perfectly cuz he's so funny. Right?

He is.

Yeah. He's so funny. And like, I just think that, I don't know. I don't know. It was just one of those moments that like I had dreamed about meeting him and then all of a sudden I'm having a conversation with him. You know, just like this, like over Zoom. And his insight, his story is hilarious. And what he's done for disabilities, obviously, in this country by being the primary author of the American Disabilities Act is— and with a person living with epilepsy, just absolutely incredible. So that's, that's one of them. Another one I would say Would be— I mean, I don't feel like I have to say this, but I had my husband on this year. And I almost didn't release the episode because I was so nervous. Because I get very— it's a very personal episode. It's very vulnerable. He turned the tables a little bit and started asking me questions, put me on the spot. And I'm so nervous. I'm so glad he did because I shared a lot of my story that I hadn't shared before because I'm more comfortable asking questions. I love being that person to draw out someone's story. So, and it was a very honest episode into what it's like to marry into epilepsy. And I just, 'cause I know that was such a thing of mine that I carried, such a nerve-wracking thing I held. I wanted to show what it could look like, you know, or just share our experience. Not that we're doing it perfectly, not that, you know, but just kind of as a way to be like, look, it's out there, it can happen. And this is how we handle it if that helps anyone else. And, you know, just talking about, 'cause I did have to tell him, I didn't have to, but I did choose to tell him pretty early in our relationship that, you know, after seizures I generally experience suicide ideation. And that's because of where they occur in my brain and, you know, triggers depression. And, um, that was really hard for me to share, but then like to get out of my mouth, I mean, but then once he heard it, he was like, okay, so what do we need? What do we need to do for when this happens? You know, tell me. And like, so we talk a lot about that in that episode. Um, and it is, and I just love that. I just love that guy so much. So it was a great episode. Another one that was awesome that released this year was with Justice Bartley. He is a young man living in LA with epilepsy. He was a coach in the NBA. And just, it's just like, he's like too young for the wisdom he drops. In his— in this episode. I'm like, this makes no sense. How can you— how can you be this wise, um, at your— in your early 20s? Um, so yeah, it's just kind of a smorgasbord.

Well, great, great shows. I know it's hard to pick. I was going to give you the break, don't worry. I was planning to give you the break. But with that, okay, it's on the half hour. Time for our news break. Here we go. Mathis on the mic. Mathis on the mic with the one and only Jennifer Mathis, my superstar news reporter. Jennifer, I, you know, every week when you're on, I'm thinking, what the heck is she going to talk about? Because like there's millions of things going on. And of course, Jennifer from Bazelon. We are the only place in the world where every single show we have someone give the news on what's happening in the disability community. And Jennifer is like— she's just brilliant. She is. She's my Rachel Maddow. So with that, Jennifer, what do you have for us today?

Okay, so many things, um, but, um, what I am going to highlight today is something going on in Utah. This was featured in the New York Times last week, um, and it appeared again over the weekend in the— I think it was the Sunday Times, um, and this is a plan by the state of Utah that is pretty concerning, uh, to us at the Baslan Center. This is a plan that Utah has to implement the president's executive order on ending crime and disorder. We've talked about that executive order on the news segments on your show. That is an executive order that links mental health and substance use disabilities with crime, which is not an accurate association, and sort of promotes a solution to homelessness of expanding civil commitment and essentially planning to, quote unquote, sweep people off the streets. To eliminate some of the strategies that have worked, that are evidence-based over many years. Housing First principles, harm reduction principles. Housing First is where you don't condition the housing subsidies that you give somebody on them engaging in treatment, because if you do that, many people who are not going to stay in treatment, then are gonna end up homeless because they can't often comply, at least at the beginning. And so it has been shown to be a failing strategy to condition housing on compliance with all the rules, and you end up leaving the most vulnerable people on the street. So, In any event, many of us have had many concerns about that executive order and, you know, turning on its head many of the policies that have been in place for years because they work. Well, what Utah has announced is that they, in order to implement this executive order, are going to take a number of steps, including building a 1,300-bed facility on the outskirts of Salt Lake City, in a 16-acre, uh, field, basically, uh, empty field, uh, near the airport. And they're gonna, uh, have 800 involuntary treatment beds among those, um, 400 for people with psychiatric disabilities, 400 for people with substance use disabilities who would be involuntarily committed. They are going to have housing conditioned on work. Unclear what any of this would look like. Unclear exactly how they would finance this building of this gigantic, gigantic involuntary treatment facility. But that is apparently their plan going forward. And so I wanted to highlight that because it is really such a stark contrast with evidence-based policy, where we have been, what we have learned over recent decades. And so it is, you know, unclear how exactly this is gonna happen. And I don't think they have, I think it sounds like they are still in the early stages of this, but that means that there is time, at least for folks in Utah to raise concerns about this, say that this is not actually, you know, effective treatment. This is not a good strategy to address homelessness and/or mental illness or substance use disorders. And it is unclear how with the state's budget and especially with what Congress has just done with the Medicaid program, and state budgets being really decimated, state Medicaid budgets and health budgets, why you would invest just tens upon tens of millions of dollars or potentially more than tens of millions in a gigantic facility to involuntarily commit people when you're not providing the community-based services that they need. To succeed. So what happens when they come out of the facility? Then what? You don't have the community-based services that they need. So it seems to be taking us back to a system where people are just gonna cycle in and out and in and out of involuntary treatment 'cause we don't have anything else for them. And that is not a life, it's not effective treatment, it's not good for anybody. And it's expensive. So it is, I think, a good idea for folks in Utah, if you agree, to let state officials know that this is not a good plan.

Now we have changed things, or impacted, I will say, through this radio show. So to those of you in Utah, I mean, this is serious. So you need to get in touch with your senator, congressperson, and you need to say that you totally oppose this and want their help. I mean, you have to, because that— you know what could happen? That could be Landis and I. We both have epilepsy, but a comorbidity is depression, and we could be going through something, the next thing there you are involuntarily, or homeless. Oh my goodness, there are people with epilepsy homeless. And you know, you have to wonder, okay, what would be the treatment in there? What would be the diagnosis in there? How would they decide the medication in there? So what worries me about all of this is it seems like we're on a trend to go back to institutionalization, and that really, that really frightens me.

Right, that's exactly right. That's exactly right. And it's the state legislature that's going to make a lot of these decisions. State.

Okay, then go to your state Senator and state representatives. You, you know, don't sit back. You know that poem about 'And Then It Was Me'? Uh, that could be you. Then it was me, and there was no one there for you. You can't sit back. You have to take action. And you'll have to keep us apprised, uh, Jennifer, on what happens.

I will do that. And I know there's a lot of people that have concerns about this, so Let's hope.

And also share this radio show. That's something you can easily do. Share the radio show. And Landis is going to share the radio show. So everyone should do that so people hear about this. Thanks, Jennifer. Thank you. Have a good day. Talk to you next week. All right. Bye-bye. You see why I do this, Landis? Yeah, I do. So everyone knows what's happening.

Yeah, because, because we need to know. And like you said, we need to act. You know, if you're not sure how to get in touch with your state legislature, Google, Google it. You know, that's the thing is we can find those resources so easily now. You know, ask ChatGPT. Be like, how can— what's the best way for me to get in touch? And the answer is right there. And sometimes it's a 30-second phone call. Sometimes it's a, you know, 30-second email. It can be as long or as short as you want. I have a friend who's an epilepsy advocate and she said, you can, you know, no one will answer the phone, you know, but you can take whatever tone you want. That day. Call every day. And one day, you know, cuss them out if that's the mood you're in, you know. But like, I just think that— I just think the time to act is now.

That's right. Yeah, the time to act is now. So we have the pleasure of being on the National Plan for Epilepsy, and I want to make sure before the show ends that we get to talk about that. So what did that mean to you to be on that workgroup and co-chair with me? What do you— on public awareness?

Yeah, I mean, when I remember, like, I think we had like a pseudo-interview to see if I could be the co-chair. And I immediately was like, I just love Joyce Bender. And what I appreciate— what I appreciated so much And I think this came from you as well as Epilepsy Alliance America, was we need to have people with lived experience to help create this national plan. Because it's— and that is not to take away from anyone else's experience. Caretakers have their own experience, doctors have their own experiences, researchers, everything. But the lived experience is an expertise that you don't get a degree for. But it is an expertise that is unlike and it's unparalleled to anyone else's. And what I appreciated is that you and I are very in sync on that. Another thing we got in common, girl. I mean, the list like goes forever. Um, but that, you know, and that's just with any chronic illness too. You know, you can have a family member with a chronic illness, but you don't have it and you don't get it. So it's that perspective that I think gets undervalued in a lot of areas. And that was something that was very driving from you, and we both felt, and I think really helped shape what we ended up creating, which was public awareness would look like for epilepsy.

And this plan covers everything. We are in the workgroup on public awareness and ending stigma because that is what leads to employment and self-esteem. Just the ability to live normally. So you've got to follow it. Once again, go to Google, you can hear what that is. But that National Plan for Epilepsy, we are in the throes of getting it finalized. So, you know, keep following about that. I too am very honored to be on that and to have such a dynamic co-chair, Landis, as you. Yeah. Landis, I did have a question. Did people react differently to you when you— people you knew, did they react differently when you told them, "I'm living with epilepsy"?

I don't think it was so much the telling them as it was the actual living with them. Experience. Because I did, you know, anti-seizure medications, their job is to slow your brain down, is to slow the firepower, right? So, you know, I had a lot, I have a lot less energy than I used to. You know, I am changed. And so I did lose people that way, because they could not accept the new version of me, which is their right, and that's their— that's the boundary that they want to have. But the same token, I had people who just came through and loved me just as much, if not more, you know. And so that's really where I tried to place my focus. Um, but it— like, in a, in a normal circle, a normal circumstance, but in like a circumstance where like I feel like I need to disclose it, like, or if I was in my former job, or sometimes, you know, meeting someone for the first time or something. It is interesting to see the variety of reactions, you know, because it's usually like an, "Oh, I don't know what to say," you know, and that's okay. We're not taught those social norms, you know. So I usually try to make it as comfortable as possible for the other person. But which my therapist is telling me to work on. But I think that, I think there's just a fear associated with it that people just are automatically like, "Oh no, epilepsy, what do I do? Oh God," you know? So it's just, you know, it's a gambit across the board.

Yeah, that is so true. But boy, if you are one of those people That stopped with Landis. You made a big mistake. You really lost out big time. You know, and it's just part of who we are. Mm-hmm. It's part of who we are. That's just what it is.

Yeah.

Part of who we are. I know you're all jealous because we are superheroes with firepower. But hey, too bad for you. Too bad for you. Um, so I do have a question. You are so overcome, so much, and so great and smart and giving, but there's always a reason for that. So tell me, who is your role model?

Oh, um, So I have had the same role model since 4th grade, and that's Harriet Tubman. Um, I, as soon as I learned about her, I became obsessed with her because I couldn't believe how much she risked. And then as I risked to help her community and her people. Um, and then as I got older, I started reading more in-depth biographies on her. And there's so much that people don't know, like she, she served in the Union Army. As a spy, as a nurse. She had a home that she had for people for like after the Civil War ended and all those things. And then I was reading a book after I was diagnosed with epilepsy. I was reading a biography on her and she and I had the same type of epilepsy. And I lost my mind when I learned that. I was so excited. I was like, oh my God, I have the same type as Harriet Tubman. But yeah, she's just always, I mean, Since I was a kid, I've just admired this historical figure as someone who said, you know, I know what's at stake and I'm gonna, I'm gonna make change anyway.

Oh, me too. She is awesome. She is awesome. And you know what? There you go. Epilepsy did not stop her. She is one of the great, uh, you know, civil rights leaders, you know, in history. And a lot of people don't know what you were saying, that she had all these— that she was a spy in the Union Army and a nurse and did that home. And yeah, if you haven't read about Harriet Tubman, when you hang up, go to your Amazon or Kindle or whatever and get the book. Yeah, I mean, it is— she is phenomenal. Too bad she didn't get on, on the, uh, monetary currency.

Yeah, I think there was like a little bit of mixed feelings about that from every community, but I do have to recommend one book I read this year on her that came out called Harriet Tubman Live in Concert, and it's a fiction book. It's completely fictional, but it is amazing. I highly recommend it. It's a very imaginative world where Harriet Tubman comes back now, as do like all these historical figures. And it's— you learn a lot about, a lot about her journey. Not everything, but it is so cool. Um, so yeah, I'm just gonna throw that book out there because I've read every Harriet Tubman book I think that's out there.

Wow, that Harriet Tubman live in concert. Um, podcaster Landis Show is on Tuesday morning at what time?

Oh, whatever time you wake up, it's posted. So it— okay, it doesn't go live, it's not a live show. Yeah, so it— yeah, it publishes at like 1 in the morning.

So, okay, now can they go back and hear old shows?

Oh yeah, the whole, whole 3 years, just wrapped up 3 years of, of this podcast. And so there's 9 seasons total. You can go look, What the F, and again, it's spelled What the EF. And it's, I say, for epilepsy what the F moments, but it's on Apple, Spotify, YouTube, covering all different topics from, you know, how do you— like, I had someone who's the head of HR with epilepsy come on and talk about workplace, you know, how to talk to your HR person, dating, having kids, all of the, all the adulting stuff that doesn't get talked about in the doctor's office.

Oh, that is so good. Yeah. Yeah. Well, okay everyone, did you hear that? What the EF on podcast is— do you go to the site? Is that where you go to hear the old shows?

Um, you just go to any whichever app. You can go to the, you can go to the website, but I'd recommend going to whichever app you listen to podcasts on. So Apple, again, it's an Acast. It's like anywhere that a podcast exists, it's there. It's like so many platforms that I can't keep track of all of them. But, um, yeah, so wherever you listen to—

I just realized, I don't— how do you pronounce your last name?

Wiedner. Wiedner.

Yeah, I don't think I told anyone like the good stuff.

Yeah, like weed, the goods. Not Widener, Wiedner.

Landis Wiedner, you are awesome. Well, you are.

Game recognizes game, Joyce. You are the best.

So friends for the long run, the two of us. Okay, we end every show with a quote, and today that quote is, "Epilepsy does not define me," said the great Congressman Tony Coelho. How about that for starting off Epilepsy Month. This is Epilepsy Month. If you're living with epilepsy, don't be ashamed. Don't be ashamed. Just remember how awesome that you are. And in the words of Mary Brooker, when you go out tomorrow morning, remember, choose joy. You won't be disappointed. Talk to you all next week.

Voice America would like to thank you for tuning in. Please join us next Tuesday at 11 AM Pacific Time and 2 PM Eastern Time for another installment of Disability Matters, right here on the Voice America Variety Channel. We are the leader in live internet talk radio. VoiceAmerica.com.