Jenna (00:00.078)

I have a really big family and statistically one in 26 people will be diagnosed with epilepsy at some point in their life. I'm on my dad's side. I have 65 first cousins and none of them have epilepsy. There should be more of us. You know, I wouldn't wish epilepsy upon anyone, but it's just pretty alienating when you don't know anyone with epilepsy.

 

Jordan (00:29.07)

Welcome back to Young Adult with Epilepsy's podcast carpe season, a podcast by a young adult with epilepsy for young adults with epilepsy. Before we get into this episode, we just wanted to remind you that Young Adult with Epilepsy is a nonprofit that provides completely free of charge peer support groups, workshops, and other resources for young adults with epilepsy. If you have any means of and want to help us keep the lights on, please consider going to the link in the description to donate and just help us keep doing what we're doing and provide even more

 

resources for young adults with epilepsy. On today's podcast, have Jenna Dalton, a young adult with epilepsy and a Yahweh volunteer. Welcome to the podcast, Jenna. So just to start off broadly, what has been your epilepsy journey?

 

Hi.

 

Jenna (01:13.472)

So I had my first seizure about a month after I turned 16. I just woke up one morning and had a seizure. And then I went to the doctor and did all the typical tests, know, the MRIs, the EEGs, all the classics. And they believe that I have epilepsy, like I was born with it. And then it just took a moment of stress in my life to bring it out. And during that time, a few months before that,

 

I found out I was moving to Brazil with my parents and I had my school finals. I had to apply to my school in Brazil. I had my swim finals because I was on the swim team and I was having to pack up for the move. So I had so much going on. It brought out a seizure and then I've just been having seizures since.

 

ask about Brazil because that was super interesting to me. If anyone listening hasn't read Jenna's blog post, it's on our website. It's amazing. She talks about pretty much everything she's going to talk about in the podcast today. But when I heard that, I was like super surprised and I was wondering, surprised in the sense of if you had any experiences like with the healthcare system in Brazil when you did move there, if there's anything that you found very different coming back to the US and like the healthcare system disparities and like differences.

 

Yeah, so when we moved to Brazil, we moved to a city called Sao Paulo, which is a pretty big city. So I had access to some nice hospitals. So that wasn't really a problem too much. The one problem or like a kind of big problem I had, I guess, was since I had just gotten diagnosed just a couple of months before moving to Brazil, it was like still very new. And I just been put on medication and

 

We are getting things figured out and we're like, okay, good. We're ready for the move and we moved and then they're like, actually here we use this medication instead and we do this. And so it was like, right? When I had finally gotten slightly adjusted. I had to change and get used to it there. But besides that, it wasn't the healthcare system. I moved to, I was in California, moved to Brazil. Then I moved to Utah for college and I've been here since and.

 

Jenna (03:27.566)

The healthcare system here, most of my experiences have been pretty good.

 

Yeah, I'm always curious because Chells, our editor, is in Canada. And then whenever we say anything about the health care system here, she's like, I had no idea that's what it was like or that these things even existed. So I'm always wondering when people have experienced other health care systems. Something that you mentioned in your blog post and I know is a really big part of your identity is community. And you talked about being a part of the Church of Jesus Christ of Latter-day Saints. And I was just wondering if you could touch on

 

how having that community and such from what I understand through what you've said to me, like such a strong community has really helped you on your journey.

 

So I've, I'm sure you've experienced this as well. Sometimes you share, have epilepsy and you don't always get a super positive reaction, whether it's rude comments intentionally, cause people aren't necessarily, they don't care. Or some people are just misinformed. You know, you get a lot of reactions, but when I've told people in my church, especially in my new ward, ward is like your local congregation and.

 

this war that I'm in is just so supportive and it's so helpful because when I've had experiences with people in the past that haven't gone well, finding people that handle it so well is life-changing.

 

Jordan (04:56.814)

I'm so excited about that for you. I was wondering if you wanted to touch on channeling service through your diagnosis because I know you did the Utah walk and you've done it in the past and you did this year with Yahweh and you raised so much money, you're a superstar, and just like how service has changed the way you viewed your diagnosis.

 

Yeah, so as I kind of touched on earlier, I haven't always been super open about the fact that I have epilepsy. But last year I went to the walk to end epilepsy in Utah and I didn't share it too much. I just shared it with some close friends and my family. And I think I had three people come and it was the same place it was at this year. It's this little farm where it's just a one mile trail and they have like.

 

all these tables set up of different companies and all these free things you could get. but this year since joining young adults with epilepsy, and I just love this org, the organization so much that when I, when I heard about when this walk was going to be, I reached out and was like, Hey, would you guys want me to see if I could set up a table at the walk this year? And so I did. And

 

They said I could, and so I set it up. had this wonderful tablecloth that Wendy and Bonnie and people, they sent me all this stuff with the logo and free flags to walk with and a whole bunch of, I still have a bunch purple temporary tattoos of like dinosaurs or butterflies or donuts that you could just put on right there. And when I had texted,

 

I just texted one girl in my new ward and was like, Hey, there's this walk coming up. If you want to join here, the details. And she told some other people. And then in a leadership meeting she had, she told the leadership and then they kept spreading it and more and more people were talking about it. And then another girl made social media posts on our ward, Instagram and Facebook with like my picture and a QR code to join my team or donate.

 

Jenna (07:07.782)

And I ended up having, I think, 28 people come this year for me. Almost all of them, I think the majority were from my new ward. Some of them I hadn't even really talked to much because I'm kind of new in this one. And yet so many people showed up and supported and donated and they, it started a conversation. A lot of people don't know much about epilepsy. You know, a lot of people think just the

 

so you can't go to concerts or you can't watch movies or something. Yeah. And all these people wanted to know more and they asked me so many questions and what do I do if I see you have a seizure and all this stuff. So just doing service about it made me feel like I could open up more because when I did, I noticed all these people that

 

wanted to help and wanted to support me. And that's something I wouldn't have known if I didn't try to, you if I didn't set up this table, if I didn't go to the walk, I wouldn't have known how many people wanted to support me in this.

 

I know, I always feel like it's such an odd sense of you don't actually realize how many people care about you and what's happening to you until you take that first step and that's been kind of something I've been grappling with in a lot of ways with this podcast because I'm, I would say open about my epilepsy, especially to my friends, but it's not, I don't have, I'm not like super open about people I don't know at work, et cetera.

 

And so when I started posting about this, there was all these people that were like, my God, this is so cool. And I told Wendy, I'm like, feels like some like I'm coming out with having epilepsy because there were so many people in my life that didn't even know. And so yeah, I feel like that's such a journey. How do you feel it kind of changed the way you share your diagnosis? Did it make it easier to share your diagnosis knowing you had that support?

 

Jordan (09:11.874)

And if you have any funny stories about bizarre reactions, I would love to hear them, because I know we've all gotten so many.

 

So first, yeah, it has changed the way I share it because some people, while I still can get bad reactions, despite how kind and supportive my ward is, and it's still, it can still be scary, but knowing that there are people out there that can be so supportive makes me a little less worried to share my story because even if this person's going to react really poorly, I have these people.

 

who aren't that way. And I just hold onto that anchor and that base. bad stories. I've had some more serious ones and more funny ones. Bad reaction that was more serious was at my high school in Brazil. One time a guy found out I had epilepsy and

 

He was like, oh, I know someone that has epilepsy and have this really cool resource that he really likes. And I was like, oh, awesome. So he pulled up his laptop to show me. And then it turns out it was just a whole bunch of flashing colors and moving things that was meant to trigger a seizure. And I immediately just shut his laptop and was like, what are you doing? I'm not photosensitive. So luckily I didn't have a seizure, but that's horrible to try to trigger a seizure in someone that's.

 

You know, seizures can be fatal. So I've had really bad reactions where people do something like that. And then I've had more funny ones. Like one time I told a guy I was on a date with that I told him I had epilepsy. Because at some point if you're dating someone that comes up. So I told him and he said, that's the thing where you can eat gluten, right? That was pretty funny. I was like,

 

Jenna (11:15.438)

There was I I think there was a solid eight seconds I just had my mouth open not sure what to say because I thought you know most people know the whole flashing lights thing most people don't confuse it with a gluten intolerance so I just thought maybe he's joking but that's not something to joke about so I just sat there for a long time not knowing what to say and then after about I'd say seven or eight seconds of just

 

I was like, actually, no. And then one that I didn't think other people had had, but after joining Young Adults with Epilepsy, we talked about it on the support groups and other people had too. Being told cures from other people. I had one lady tell me, if you put frankincense essential oil on the bottom of your left foot,

 

You'll no longer have epilepsy. You won't have to take your meds. You'll be completely cured. And I'm just going, wow, that's really cool. I hadn't heard of that, you know, trying to be nice about it. But I think if that were the case, if it were that simple, the medical community would have found that out by now. So I've had more funny reactions, more, not as funny ones, but I think a lot of it stems from misinformation.

 

or lot of people just not really caring as much about epilepsy.

 

Yeah, I don't know if you saw it, but someone commented on one of our TikToks recently being like, if you all tried the connervoire diet and only ate meat, you would be cured. I was just like, it's just so funny to me. like, I don't know where you came from. recently, I had someone that was like, if you just do shrooms, you'll be cured. my, like I just did shrooms for like X amount of days and it cured my epilepsy. And I don't know, maybe.

 

Jordan (13:19.77)

but I don't think that's the right thing for me. I remember like the most, like, I would say inappropriate reaction I ever got was in my master's program. There was this other student. and I think I literally had mentioned my epilepsy like twice and it was purely because like we were going out late or we needed to drive somewhere. And it was like the second time I was ever talking about it. And he's like, you talk about this too much, like get over it.

 

And I was just like, what kind of reaction is that? Like it's something that happens in my personal life. And also it's something I'm pretty not vocal about with like people I don't know that well. So I was just like, you've probably heard about this once before. I'm not really sure what your issue with me is right now. And I feel like, I don't know, and maybe this sounds crazy, but I feel like so many people just view people with disabilities in general and like with epilepsy as dramatic.

 

I feel like I've gotten that a lot because since epilepsy is such a big spectrum, I feel like there's so many people that are like, it's not that big of a deal. And it's like everyone's epilepsy is so individualized. So it could be much more of a big deal to me than someone else you've met. And so I always, it's crazy, man. People are out here saying the weirdest stuff. I was wondering, speaking of me talking about driving places,

 

So I know you live in Utah and so was wondering like maybe there and compared to other places you've lived, what's it like getting around? Because I know there's a lot of, we've had a lot of conversations before at Young Adults with Epilepsy about public transportation and how do you become an independent adult? So I was wondering if you had any takes on that or experiences?

 

think it, at least in Utah, it depends where you live. If you're in Salt Lake City, which is a pretty big city, there's some really good public transportation there, but I don't. And living there is a little more expensive because of partially, you know, access to all these great things right next to you. can be more expensive. So I don't live there.

 

Jenna (15:34.016)

I don't have access to good public transportation. Even if I want to get public transportation, it's like 15 minute drive away. It's not great, but my ward is so supportive. Like I hadn't even shared that I had epilepsy at this point. I think only a couple people knew and it was because I needed a ride to get to church. And this guy who

 

is kind of over, church does this thing called ministering, which is one-on-one, I don't know how to explain it, just caring about someone individually and you're kind of assigned certain people. And so you always have someone that if you're struggling, you know you can reach out to this person because they minister to you. And this guy came up to me and he was like, hey, you can't drive, right? And I was like, yeah. And he said, okay, well, I heard that. I changed your,

 

ministering brothers to men who live near you so if you need a ride you can always reach out to them to ask and it was just so sweet that they really do care about each and every person and their needs and I have some friends who are in my ward that don't live near me they live I kind of live on top of a mountain ish

 

And people who live at the bottom of the mountain will still be like, oh, I want to come up and give you a ride because I love talking with you. Or I think it's so fun and I really like helping people. And so there are so many people who are still willing. one time I reached out, I think it was this, yeah, this past Monday, I reached out to someone to go to a ward activity.

 

And I was like, hey, can you give me a ride? And they couldn't, but then reached out to other people on behalf of me. And they're like, I couldn't, but this person said they could. it's really sweet because as we've talked about, it has been hard not being able to drive, especially as an adult, because it's one of those ride of passages, you know?

 

Jenna (17:39.374)

I'm 26 and not being able to drive, a lot of times if people find out, they go, well, why can't you? You you're an adult. And so I've had some people think that I failed the driver's test so that I don't have a license. And it's just kind of like, no, I actually haven't been able to take it in the first place. You know, in Utah, you can't, if you have a seizure, can't drive for three months.

 

And while there have been times I've gone more than three months without a seizure. I've talked about it with my neurologist, cause you do want to talk about it with your doctors and see how they feel as well. Not just go, it's been three months hop on the road, you know, and my seizures typically happen earlier in the morning. Like if I'm getting ready to go somewhere or shortly after I wake up or later at night. So a lot of the time.

 

that a lot of times I would be wanting to go somewhere, I would need to be in a car, like if I'm leaving early for church or going to work in office or going to a party at night, coming back, you know, a lot of the times I would be needing to drive are times where I'm more at risk to have a seizure in the first place. So I also know just thinking about systematically that wouldn't really work. And it can be really frustrating because there's sometimes

 

where it's like, I need to go to the store right now and it'd be really convenient if I could just hop in there and go get my stuff and come back because I don't want to pay for shipping. But I can't unless I'm trying to find someone, anyone going to Walmart anytime soon? And so it can be very frustrating.

 

And going on dates, can be tough because all my dates, I'm like, can you pick me up? So I don't have to pay for an Uber because that's very expensive. And then there's that whole thing, having to explain why you'd want to be picked up instead of you driving. So, yeah, I don't really want someone dropping me off for a date at my age, you know, 26 and having like.

 

Jenna (19:55.114)

My parents dropped me off on a date. Yeah, I love them, but that might be a little weird to my date. yeah. Great way to meet my parents right off the bat.

 

Could be cute though.

 

Jordan (20:08.362)

Something for me. Well, first of all with like the whole dating thing It's always scared me because I'm like, okay So I'm like not really like met this person and I don't know them that well But now I have to ask them to drive me places like just in general like I had a friend once who like the date picked her up and like wouldn't take her home and Like that's like someone without epilepsy. And so I'm like, I'm always like I'm scared of men kind of I like I don't know what's gonna happen to me, but I feel like I

 

The whole like not driving thing is just crazy to me in so many ways because I feel so blessed because I'm in Boston and like everyone takes public transit because it's a hellish city to drive in. And like, Chelsea sent me this TikTok the other day about like the whole very demure trend. it's like, Boston is not very demure. It's not very mindful. Like you don't want to be in a car there. But I feel like there's I always get such weird comments because

 

I either, hear all the time people about like adults that can't drive being like, that's so childish, which I think is just not fair to begin with. But also so many people ask me why I can't drive. And it's like, I just met them and my answer, I don't know if this is good joke, but like what I always say is I'm like, I like deadpan arms. Like I hit someone with my car once.

 

And so now my license is suspended and that's like always my joke. And then I immediately tell them that I'm joking, but it's just like, always kind of makes people stop in their tracks and be like, maybe I shouldn't have asked her that. that's like my favorite response to have, cause I'm like, why are you asking me personal details? Who cares if I drive or not? Like, I feel like it's becoming more and more normalized, like in our generation to not drive. And I appreciate that so much because I'm like, it makes me not stick out as much, but yeah, man, public transit is crazy. People are crazy.

 

The comments are always wild. I was wondering if you wanted to talk about how you found Young Adult to the Epilepsy, where you found it, what peer support groups you've been to, how kind of you wanted to get involved and what your involvement has been.

 

Jenna (22:08.458)

Yeah, so I heard about it through the Cameron Boyce Foundation. They posted about it, I think, in their story and said, hey, there's this support group for young adults with epilepsy. And I personally didn't know anyone with epilepsy until that point. And so I kind of thought, you know, I'll just hop on, see how it goes. Maybe I'll just go one time. You know, maybe I won't be a regular, but

 

we'll see and then I went on there and I loved it because I finally felt really understood. You know, a lot of people say they understand what you're going through, but they don't. And there's some things that you struggle with because of epilepsy that people think, I know what you mean. Like something we've talked about on those calls is the short-term memory loss and

 

I know a lot of people that go, I have a bad memory too. And I don't mean to do the, we're not the same, but at the same time, we're not the same because my short-term memory loss is different than just someone having like forgetting things every once in a while. It's our brain fog is different than what other people think brain fog is, or just certain problems, you know, the

 

constant fatigue you get from medication and people are like, yeah, I'm really tired too. And it's just, it's different. And so hopping on those calls and realizing, there are people who do know what I mean. That when I explain this, I don't have to go, well, it's kind of like this. I don't know if you get it. Everyone's like, I'm right there. I had that experience today. And it really helps me feel like I'm not.

 

alone in this and I've loved that because it kind of, it can be hard. You know, I've lived in a lot of places. I have a really big family and statistically one in 26 people will be diagnosed with epilepsy at some point in their life. And I just, I'm on my dad's side. I have 65 first cousins and none of them have epilepsy. And I just, I want to be like,

 

Jenna (24:30.472)

Statistically, there should be more of us. I wouldn't wish epilepsy upon anyone, but it's just pretty alienating when you don't know anyone with epilepsy. So then going on these calls, meeting you and Abby and Austin and Chell's, all these people that have the same struggles is so comforting, especially the not being things like the memory, I think is a big one, or the not driving.

 

Because other people, when I tell them I can't drive, they think, that's weird, or that's kind of childish that you can't drive. But then I'm on this call with a bunch of other people who also can't drive, who also know the, you know, trying to get good public transportation or trying to find someone who can give you a ride to go to this thing. And I've loved the calls and that's why I wanted.

 

to at the walk set up a table so that people could know about it and more people could join it because this could benefit so many people. So if you're on the fence about coming to a support call or a workshop, I think you should try it out. Even if it's just one week, I highly recommend it. And you don't even have to have your camera turned on. You don't have to say anything if you don't want to, but it's just a great way to know you're not alone.

 

Yeah, I feel like there is so many things that I'd never had someone actually understand until I joined a peer support workshop. Like, remember people, the whole like sleeping thing has been such a big thing for me because people are like, I get it. Like I sleep a lot. I'm like, no, you do not understand. On my medication, I will sleep for 20 hours straight if you let me. Like you do not understand what I'm talking about. And yeah, I feel that so much with like the memory fog because

 

And I talked about this like in my first, the first time I ever talked to Wendy and Stella, who's on our board at Young Adults with Epilepsy, was there's this weird stigma I've always like had people say to me, like when I like mentioned like, I'm very forgetful sometimes, especially if I've had a seizure, like the next few days, I am not a person that you want to try to remember anything. But there's just like, every time I say that someone's always like, well, you're so smart. Like you do all these things, like you have a job and you have like multiple degrees. And I'm like, but

 

Jordan (26:53.718)

That's such a weird misconception to me to be like, people with epilepsy aren't smart or capable. pretty honestly, I'm like the smartest people I know have epilepsy. And I just think it's such a weird misconception to me when people are like, you can't do these things because you have epilepsy. And I'm just like, why do people think we're less than for really no reason? And I think it's just so comforting to come to Yahweh because every single person and every single call

 

has such a unique story and they're all just amazing people. And I feel like it really shows that diversity of who people are. This section of the podcast contains discussion of death and epilepsy. If you want to skip this section, please fast forward to 28 minutes and 55 seconds. I was gonna say about how I think, it's so interesting to me that you have such a large family and you don't know anyone in your family with epilepsy.

 

because I have such a small family, like there's barely anyone in my family and my uncle had epilepsy. And so maybe I'll get through this story and then you can tell me if you relate to this, because this is kind of a crazy story, but my uncle had epilepsy and it was not something that we really talked about a lot in my family. And part of the reason was he was really religious and I'm religious, my family's religious, but he was.

 

religious to the point of God is going to cure me of my epilepsy and He eventually unfortunately passed away from his epilepsy because of that belief And so that's no. No, I'm just sharing my trauma off this podcast But like that's obviously changed a lot of things for me Like I personally with the amount of time I've had between my seizures I could drive I don't think I ever will drive because he had a seizure driving once and gotten to an accident and luckily no one was like really hurting that but like for me, it's like

 

I can't imagine the idea of putting anyone else in danger ever, even if like everything seems okay. But I guess, yeah, I was wondering if being a religious individual, if you've ever had those reactions before, because I don't know. I don't want to like sound negative towards anyone that really has that belief in God that like God will cure them or whatever because

 

Jordan (29:11.478)

I think that is a very valid thing to believe and be religious in that way, but I was just wondering if you've had someone say that to you or had sort of an interaction with someone like that.

 

Yeah, I'm, my family's pretty religious. I'm pretty religious, but I don't know. I can't think of a time when someone has told me that because in our church, are very, we really have the belief of you're given trials and if you're given them, you can handle them. That doesn't mean they're easy. You know, having epilepsy is never easy, but you can do it.

 

And it doesn't mean that you are a bad person and that you deserve to have this. It's not on you at all. And just because God can cure things doesn't mean he will, because we really believe that everything happens for a reason. So yeah, I have epilepsy and I believe that he has the power to cure it, but that doesn't mean he will.

 

And that's fine because we all have challenges. Everyone in the world has different struggles, you know, and just because it's not epilepsy doesn't mean it's not a difficult challenge. You know, some people have to deal with addiction or some people have to deal with other chronic illnesses or trauma from their childhood or something. You know, there are so many struggles that people could deal with and

 

I don't think I've ever been told by someone in the church that, you know, God's going to cure you for whatever reason. You know, that's just not how it's looking for me. You know, most people, I don't think I know of anyone that's technically been cured of their epilepsy. You know, people might go longer periods of time without having a seizure, whether that's just because their medication controls it or they've had a surgery that's really helped. But right now it doesn't.

 

Jenna (31:14.126)

seem like there's a cure. But one time I was talking about it with talking about this with someone in my church and she was saying how in a way I can use this to bless others because other chronic illnesses now that I have one, I can better understand other people's chronic illnesses. You know, even if it's again, even if it's not the same medical condition, I can still kind of understand the struggle of

 

I have an illness that's going to be with me for the rest of my life and there's not really anything I can do about it. And being able to relate and help people more can be a benefit in a way. So I try to just view it in the ways to give service, like we talked about earlier, going to the walk and spreading the word. And if I can't do anything to not have epilepsy, what can I do with it? And

 

advocacy, volunteering, sharing my story is something that I can do.

 

Yeah, I feel like that's just such a healthy mindset. I love that. I always, I remember on Mackenzie's podcast, she made a comment about how everyone's always telling her she's so brave and she's so strong, but at the end of the day, she's doing what she can to get through the day. And I feel like that's how everyone feels and everyone has to be brave and strong and get through the day in their own way. And this is just the thing we have to deal with.

 

So before we end the podcast, is there anything you want to plug? Your Instagram, anything upcoming?

 

Jenna (32:52.75)

actually not that I can think of. I don't have anything like too awesome coming up in life, but I don't know. Just plugging trying to be, I don't know if this is a plug, but try to be kind to everyone. Try to be empathetic and a good listener. Don't.

 

judge someone for whatever they're going through or their condition because I'm sure you've experienced that as well, judgment or stigma when you share it. And so this isn't really a plug, but just a good message. I hope people take that away from this. Just really care about people.

 

Well, thank you so much for being on the podcast, Jenna. Thank you for watching this episode of the podcast. As always, you can go to youngadulttotheepilepsy.org to join our weekly peer support groups or monthly peer support workshops and find other resources for young adults with epilepsy.

 

Thanks for having me.