Abby (00:00.19)

closest encounter I've ever had to a celebrity. How unfortunate that I had a seizure during it, but I like to tell people that, you know, I never really met Josh Hudderson, but I like to think he met me.

 

Jordan (00:16.264)

Hello and welcome back to Young Adult with Epilepsy Central Coast Podcast Carpe Season, a podcast by a young adult with epilepsy for young adults with epilepsy. On today's podcast, have Abby. She's a substitute teacher, child care worker, and a peer support lead here at Yahweh. Welcome to the podcast, Abby. Thank you. How are you today? I'm good.

 

Thank you Jordan, I'm so happy to be here. Going really well, how are you?

 

The first thing that I wanted to ask you about, I feel like maybe this is an obvious question, but as a young adult with epilepsy, what has been your epilepsy journey? What has that been? What has it been like?

 

Mm-hmm. It's a good question. It's been a lot of ups and downs. I was diagnosed the summer before I turned 12, which was already like a really tricky period to navigate as a kid. And then you add the epilepsy diagnosis right on top of it. And I remember at that time I was doing competitive swimming and it was right after...

 

went practice early in the morning that I had my first seizure and it really just flipped my life, like turned it on its head. And I just remember struggling with my epilepsy identity for so long all throughout high school. I just wanted to ignore it. I just did not believe. I'm like, if I can go throughout my everyday looking fine, then I am fine. And I don't have this.

 

Abby (01:50.872)

kind of thing lurking behind me. And then I went to college and my seizures kind of started back up again. And so it's been a lot of navigating like the healthcare system, trying to find my identity and who I am and how my epilepsy relates to all of that. It's been a really long, complicated process, but.

 

Yeah, ups and downs, ups and downs. think I've found myself throughout that whole sort of journey. Does that make sense?

 

Yeah, I totally understand. I was officially diagnosed with epilepsy when I was 11. I had epilepsy my entire life, but they diagnosed me with cerebral palsy originally, which I feel like as just a human being, you can look at me and tell I don't have cerebral palsy, but that's what they thought I had as a kid. so.

 

It was just really weird going through it because I went through that identity switch at the same time. And I feel like, like 12 is such a weird age to begin with, right? like being a preteen. so I totally understand that. yeah. what did, did anything really change for you? guess, kind of like swim team and maybe just like the high school experience. Cause I know a lot of the people that work at YOWA are a little.

 

nor unique than us and like they were diagnosed later in life. So I was wondering kind of like what that was like for you, maybe like school and high school, all of those changes in a time that's already kind of insane to exist in.

 

Abby (03:29.858)

Yeah, the pre-pubescent and then pubescent area just, man, it's so turbulent. Emotions are already at an all-time high. Being diagnosed at that time, I had spent most of my childhood being an athlete. And when I was diagnosed with my epilepsy, I had to quit the swim team just because

 

for my safety, it wouldn't be a great idea to have a seizure in a pool. And I instead turned to dance and I was able to still have a really, I'll say successful dance experience. And I was really lucky that I found some great meds. I started, really cycled through a lot of meds in the beginning, but we found

 

and that ended up working for me really, really nicely. And I was, I wasn't seizure free. I was still having abson seizures quite a bit, but grand mal seizure free for about four ish years. And so I was able to go through high school, reg pretty, what felt pretty normally. I was still a student athlete. w I did.

 

dance full time and then I was also on a tennis team for a year, which is really exciting. But there was still that lingering in the back of my mind like, I should probably be really careful doing all these things, all of this exercise, all this exertion. Will I have, because I was a dancer and I was on stage and there were these bright lights, will I have a seizure on stage?

 

How do I communicate to my peers who are choreographing and setting up the light cues? Because I am a bit photosensitive. How do I communicate to them, make sure that there are no super quick light changes just for me in this dance? And how do I not feel shame when I do that? Which I didn't quite get there all the way when I was 15, 16, because I really wanted to fit in.

 

Abby (05:52.12)

Thankfully there were no issues, but yeah, navigating that, it's just, I just remember being 15 and feeling so small.

 

At that age I was kind of in and I fell into that a little bit in college But just like in a way denying it I'm like if I don't talk about this if this is not something that I share with people then it's not real Obviously, that's not the case. I'm still no matter what going to be different like it's not like I was driving or going out really late And so that was definitely something that I felt was I was like maybe if I just like don't talk about it or put it in the back

 

It's not real, it's not something that's happening to me and I feel like that's such a toxic mindset to have, especially at that age, but I agree. And then I feel like I just made it worse. Like I felt like I made myself more small by just ignoring it completely.

 

Yeah, I feel you 100%. It's one of those things where you just want to be normal. You just want to fit in. It's such a crazy age. by ignoring it and avoiding it and avoiding all of those conversations about it, you're really only isolating anybody from understanding you and your own needs. I'm so sorry if you can hear my talk in the background. But yeah.

 

It really is one of those things. And for people with epilepsy, you're already so isolated to begin with. I know, I hear it a lot that a lot of people who are diagnosed with this condition, especially as young adults, they don't really know anybody else who has it. And so that makes it even harder to bring it up in conversation. And so...

 

Abby (07:42.966)

You just kind of, if you already have those feelings of guilt and shame about who you are and living with epilepsy, it just feels like it just compounds it and it becomes impossible to talk about.

 

Yeah, and I feel like it's something that's so important to talk about, especially as we know, like the statistics for adults with epilepsy and anxiety and other mental health issues is just insanely high. And I feel like that's just somewhere that Yahweh has been so important is because that was the case for me. was like in where I live, I know absolutely zero other people with epilepsy. But then being able to join the peer support workshops and like come to Yahweh, I'm like, I actually know other people.

 

and I can talk to them and they understand what I'm saying and I don't feel so alone and I don't feel so much like I'm hiding who I am as a person.

 

Yeah.

 

I wanted to talk about college because I feel like college, in my opinion, is one of the hardest things about being a young adult. It's the first time most people are away from home and just kind of figuring out everything on their own. So was wondering if you felt like college was unique or if there were any specific challenges you had doing college with epilepsy.

 

Abby (09:03.318)

Ooh, good question. I would definitely say that there were some really unique challenges presented with college because like we were talking about, a lot of being diagnosed early on, a lot of the struggles we face is we're all just trying to find out who we are and figure out where we fit in the rest of.

 

society and everything and with our peers. And for me, when I remember, I picked a school that was just far enough from home to where I could really feel a sense of independence, because I feel like epilepsy can really rob you of independence and autonomy. And I felt like, okay, if I go far enough, but still in the same state, I could

 

can appease my parents, and then I can finally figure out, you know, what I'm doing and explore everything. But there's also all of those dangers and risks that come with being so far away from home and exploring. I know a lot of my peers drink a lot my freshman year and they partied a lot. And I remember being so conflicted. like, okay.

 

Now it's a completely like blank slate. Now is my chance to be open where I wasn't in high school and say, I have epilepsy. I can't drink. I'd love to hang out with you and join you on these, in these social events and just really testing the waters and see how people would react. And thankfully I found people who were really open and willing to hear me out and be like, tell me more about it.

 

does that work for you? And we were still able to go out and be social and I would just be kind of the Dee Dee, except none of us had a car at the time because it was our freshman year. And so by Dee Dee, I was just the one with the water cup, making sure everyone was okay. And we still had fun. But as I got

 

Abby (11:26.752)

went through college, got a little bit older, and things got a little bit more expensive. I remember thinking, okay, now I need to get a job. How do I get a job while also being a full-time student, while also not having a driver's license? Can I trust the bus system to take me places or do I need to Uber everywhere I go? Can I even...

 

Are there even jobs nearby for my skill level that would work with my schedule? And it really was just such a tricky little type room that I was walking. And there are so many factors I had to consider. I, thankfully I had a ton of support from, from friends and family who were helped, like so helpful in helping me find all those things. But.

 

I think there are definitely a lot of obstacles and roadblocks that I kind of bumped into as I was trying to navigate. Just, I just want to pass college. I just want to pass this class. I'm already dealing with the stress of everything and trying not to induce seizures because of lack of sleep, staying up because I procrastinated on an assignment. I have to, shoot, start my career, build up experience.

 

It really is just, it's tricky. It's really tricky.

 

Yeah, I feel like and something that I found in college was just the fact that I feel like epilepsy has so many cycles, right? And I remember like my freshman sophomore year, I was like, was doing great. Like, everything was fine. My meds were working. And then all of sudden, like my junior and senior year, everything wasn't great. And I started having seizures again. And it was a really hard time for me. And I feel like being in college as a young adult with epilepsy really does

 

Jordan (13:30.892)

give you the ability to advocate for yourself. I remember that my senior year I was having kind of a hard time and someone was like, well, why don't you go to disability services at your college? like, well, what are they going to do, right? It's not like I'm actively having seizures in class. It's not something where they're going to give me extra test time or whatever, but I went.

 

And really all that came out of it was that they decided they needed to give professors like seizure training, which, you know, that's great and super helpful because I, that's like a whole nother thing to talk about, but like super important. but even just like being able to, like have the guts to go and say like, this is what's happening with me and this is what I need, was really hard for me. And I feel like friends was hard in college. I luckily also found my people, but.

 

I feel like when you're someone with epilepsy and just having that first instance of having a seizure in front of a friend or something epilepsy related, that changes a friendship so much. that's something so hard when you are farther away from home and you don't really have that many people. And it's like, how do I make these friends? But at the same time, it's very easy to lose friends when you have epilepsy because it's a scary experience. And so, yeah, I feel like

 

College was very much cycles and I totally agree with you on everything you're saying I was wondering if we can talk about the Josh Hutcherson

 

I'm afraid of that.

 

Abby (15:08.78)

Yeah. So really to relate back to what you said, I think that was a perfect segue on intentional, like intentional or not. But yeah, college was really all about cycles and living with epilepsy was really all about cycles. And my freshman year, this was 2019, early 2020. So right before COVID really hit everything.

 

I had just changed my medications just because while Depakote was really working for me seizure wise, there's a ton of side effects that just weren't great for me. And I was still kind of transitioning onto these new meds and getting used to them. And they weren't as great for the seizures as my Depakote was. And I remember it was right in the middle of...

 

Where I was, I at UC Santa Barbara. So we did everything in quarters. So was right in the middle of our winter quarter, right in the throw midterms. I was just all nighters left and right. Santa Barbara weather was really tricky because this was February and I was anticipating it to be cold. It was a very hot day. So I had stayed up really late working on an assignment. I had to wake up early to go.

 

not quite to a class, but to like a seminar. And I was a little overdressed for the weather. So stressed, tired, hot. I didn't eat anything because I was just running late. And also running late, I didn't take my meds. Quite literally the perfect cocktail for a seizure. But it was, my epilepsy was kind of the last thing on my mind at that point in time. I was just trying to like, okay, there's so many things I have to do. I just got to do them. I just got to go.

 

And I remember walking back to my dorms from that seminar and thinking, okay, I'm going go back to sleep, get my body aligned. I'm going to go get some food and a rest. And it's going to be great. Take my meds and everything will be fine. And then I see a crowd forming in front of the library. And I remember this email that had been sent out the day before saying that

 

Abby (17:32.204)

Josh Hutcherson was going to be on our campus because he was advocating for the presidential primaries and trying to get students to sign up and to vote, which is really amazing. And I really agreed with everything that he was standing for. And I really wanted to see everything that he said. And also this is Josh Hutcherson. Are you kidding me? my gosh. And so I thought, okay, well, I've had a fine morning so far. I think I'll...

 

it should be fine if I just stand here and I listen to what he says and then I'll go and do all the things I mentioned before getting my breakfast, take my meds, go back to bed. And at the end of his speech, I was like, my gosh, he's so close. He's so close. He's right there. At the end of his speech, he's like, we're gonna walk around campus to really...

 

try and get as much visibility as possible to try and get people to sign up in case they didn't know that he was there. And I thought, yeah, this is a great cause. I'm gonna walk with him. And so we were walking around campus for about 25 minutes and I was really starting to feel it by the end there. The heat, the hunger, the stress, and I remember...

 

don't know if you ever get auras. I've kind of discussed this with some other people from from Yahweh, but when I get an aura, it's like a feeling of like weightlessness, like almost like euphoria and also dread at the same time. And they come like mere milliseconds before I'm about to have a seizure. I know it's like, here's this warning that you're about to have one.

 

You can't really do anything about it because you don't have any time to react. But I remember kind of like feeling it. There's this, I you see this path, like part of the bike path and this tunnel you go through. Then it has these lights that flicker and turn on as you walk through it. And as I was walking through it, I thought, dear, okay, something is not right.

 

Abby (19:47.21)

this might go horribly wrong. There's a bench less than five feet away from me. I'm going to make it to that bench and I'm sit down and hopefully I'll be okay. And that was the last thought that I had before waking up in the emergency room. And I went, okay, darn. Okay. Well, we tried. We really, really tried. And throughout that whole walk, I was kind of...

 

of fangirling a little bit trying to push my way closer to Josh and I remember being like maybe two to three people behind him before I blacked out and had the seizure. I remember being like okay I check my phone I go on Twitter and I look up UCSB I look up Josh Hutcherson see if there's any news about anything that happened because I don't know who sent me to the ER I don't know who called he

 

was like thinking in my head, he most definitely saw this, didn't he? And I found a post that someone had made. They posted a picture of a text thread of their experience with the walk and being like, my gosh, Josh Hutcherson is here, guys. This is so fun. And it was so funny. They were like, my gosh, I'm right behind him. Girl just had a seizure. Anyways, here's a selfie I got with him.

 

And I quote tweeted that post being like, I took a photo of myself in like the emergency room bed. I mean like, haha, that was me. I'm okay, guys. Just trying to like, because what else can you do in that situation? You have to laugh. And she related to me. She DMed me and said, don't worry. He waited until the ambulance came. He waited by your side.

 

before we moved on and registered people to vote, whatever. I have no way of fact checking that just because we, as you know, us epileptics, we black out. But I like to tell people the story because it's the closest encounter I've ever had to a celebrity. How unfortunate that I had a seizure during it, but it's something to laugh about. And I like to tell people that, you know,

 

Abby (22:15.958)

I never really met Josh Hutcherson, but I like to think he met me.

 

It feels like the beginning of some romance. seizure, or Josh Utterson comes to ambulance with her, you know? It could have been the start of something, but too bad he has a girlfriend.

 

Yeah, like a wop hat.

 

Abby (22:35.086)

I could have, I could have.

 

man, it's okay.

 

I had the biggest crush on him when I was a kid. So when you said that, was like, my gosh, like totally understand. Like, yeah, I had such a big crush on him in like middle school during the whole Hunger Games era.

 

You and me both. I still kind of do. He's a short king and how embarrassing. It's like my one chance to meet him and I blew it.

 

He probably remembers you though, so...

 

Abby (23:07.81)

Maybe I'm a little too, I don't, a little too embarrassed to reach out to him and be like, hey, hope you're doing well. Thank you again for this. I was told you did this. but.

 

Yeah, yeah, I college was such a time of pushing yourself past your limits, I feel like and it really it really lets you know what your limits are as someone with epilepsy. And I definitely pushed them too hard a few times. But also, I guess something I relate to and maybe you have something else to say about this. But there was like one time I had a seizure in college and I had like I was on my bed.

 

and was like a lofted bed and I fell off my bed. And so they like obviously had to take me to the emergency room, but you know, it's college, no one has cars, no one went with me. Literally. I love my friends to death, but they sent me, was in my pajamas, no shoes, no phone, no way of contacting anyone. And I like, I just feel like it's such a different.

 

experience like when you have those situations in college where it's like okay I am in a completely different state than my family I don't really know I don't know anyone here with a car like I have no idea how I'm getting home and I feel like those experiences are just something else in college when you do have the seizures yeah definitely some fun times for me but

 

Yeah, I mean, what else can we do now but look back and laugh and go, what the hell? But as horrible as they are, because it really is, it's like a really sucky situation to be in. Like you said, you were stranded basically in your pajamas. You're in the most vulnerable state you could be. Your body's exhausted.

 

Abby (25:06.006)

your emotions are probably super, super high and now you have no phone and no way of contacting anyone. You don't even know where you are. It's just what a way to build resilience is the way I've tried to be optimistic about it because I think it's I think it's true. I think people with epilepsy really have to be super adaptable and resilient.

 

for whatever situation comes up in life because what else can you do? We survived, thank God. Now let's figure out a way to get out of this situation. How do I get home?

 

Yeah, it was such a weird experience. Like I was in my pajamas. I was in like a tank top and shorts pajamas. It was snowing because it was in Colorado. It was such a weird experience for me. Luckily, like I was able to get a hold of my mom and like find people to pick me up. But insane experience. I will never forget that one. I was like, I have no idea where I am. I'm like half naked. It is snowing. I guess so. What?

 

Like

 

Jordan (26:19.342)

drew you to joining Young Adults with Epilepsy as a peer support person, just in general, because I'm assuming you joined after college, but obviously I don't know that for a fact, so.

 

It is true. did join after college. well, I wish really, where do I start? That's another thing about epilepsy is my brain is kind of just all over the place all of the time. I graduated last year, with my bachelor's degree. And after graduating, I remember having a really tough time finding work.

 

I knew I had the experience I needed. had the GPA I needed. I worked really, really hard. And then after I graduated, I moved back home and, every job that you're looking at, it's not in the job requirements, but they all required a driver's license. And it really was just a a huge barrier. And I remember just being so, so frustrated and...

 

I didn't, I don't want to say that I was giving up on myself, but I remember just feeling like I wanted to give up. Like what, was the point of doing all that work? It's so hard. is so hard. Getting that degree if, none of it mattered because I didn't have a license. And I would even try and like email certain positions to beforehand.

 

say, by the way, I uploaded my ID. It has not been taken away from me. I don't have any criminal charges. I promise I'm an upstanding citizen. I can work in your office. just, I don't have a license. I just don't have a car. But I remember being so frustrated with that and just being kind of forced to confront my epilepsy a little bit that

 

Abby (28:31.916)

My mom and I found the Young Adults with Epilepsy Walk in Monterey and I thought, why not? It was the day before the walk. like, why not? Let's sign up, let's go. And let's just find other people who might kind of understand and see what maybe they're doing in their careers and whatnot. And it just so happened that I was able to meet Wendy and Austin and

 

Bonnie wasn't there, but I met David Clifford and Wendy was amazing. She's like, we are looking for people in peer support and you studied psychology. Why don't you come help us? And it really was just like a one in a million chance that that happened that way. I was really, really lucky. And I thought, wow, yes, please.

 

Not just because of finding a career, but because I was able to work with people who got what I was going through and just really feel like I was addressing a part of myself that I had been ignoring for a really long time. So yeah, that's kind of how it worked. It was just a really lucky chance encounter.

 

Yeah, I feel like we should fact check those people. feel like it's like you can't drive. You can't have a job. But like maybe that's a separate podcast for a separate time. But I feel like that has to be legal. I mean, I had the same thing. I remember this sounds so weird when I say it aloud. But like for me, COVID was such a blessing because that was the end of my sophomore year. And I was like, shoot, I have to move home. I have nothing to do. I have no money. Like I need to find a job because I was working on campus, which was so convenient for me. But it's like, hey, no,

 

You

 

Jordan (30:30.576)

I actually need to find a job and because of COVID, everything was remote. And so the job that I'm still at today hired me remote and I'm still remote. I was like so grateful just to have as obviously no one's grateful for COVID, but it was really like grateful for me that people started to become as a result way more accepting of like situations where people can't drive and where people may not be able to be in the office every day. And so that was something that

 

came as a blessing for me. And yeah, I totally understand what you're saying with Wendy. my gosh. The second I met her, she was like, I want you to do stuff for us. And I'm like, okay. And she's like, you have a philosophy degree. That's so interesting. And I'm like, is it? I don't know what I'm doing with my life with a philosophy degree. But yeah, I guess I wanted to ask kind of about how you've been doing the peer support groups and what they look like, because I know

 

for me when I was pitching, starting this podcast to Wendy and Bonnie, a lot of it was like, I went to my first peer support workshop in March and I almost chickened out. Like I almost didn't go because I was so nervous. I was like, I don't know anyone. In my head I was like, are they gonna accept me in my kind of epilepsy, which is so stupid. Like now that I know everyone at Yahweh. But part of me pitching this was like, well, if someone can see Abby, like,

 

before and be like, this is Abby, like she's so sweet and loving and caring about everyone that it would make it easier to join. So yeah, obviously I didn't check it out. I got to meet you and Austin and you're both such wonderful people. So I guess what is to you the purpose of the peer support groups or what do you hope people get out of them?

 

Well, I went to my first, well, firstly, thank you. You're so kind. You're amazing. But also when I went to my first peer support group, it was back in January with Bonnie and I had not met Bonnie face to face at that point. And so it was really just, I'm gonna go to this because I know Wendy and I know she's just such a...

 

Abby (32:45.614)

She's just such a delight. And I remember I almost chickened out too. I knew I promised these people I would go and check this out. I was like, I will help them with peer support. So I have to go and see what peer support even looks like. But I remember sitting there. I have like D &D dice that I always just kind of keep in front of me, in front of my computer whenever I do these virtual.

 

types of things because whenever I'm nervous I play with my hands a lot and I've started to pick up my nails too much. So I was fidgeting with this dice, this 20-sided die the whole time and I was so nervous. And I think part of it comes back to that for me, I had hid my epilepsy for as long as I possibly could until I got to a point where it's like, I can't hide this anymore. My seizures are getting worse or they're...

 

Increasing in frequency and my lifestyle just it has to change to accommodate my epilepsy and so I Was not used to being vulnerable and being like open about all of my thoughts and my feelings or Not even just with other people but with myself. I remember seeing that I was just so nervous and Kind of like how you said

 

Like these types of conversations when you get nervous, he kind of just black out and he just do it. I kind of felt like, oh, I kind of liked that first peer support group. Not in a bad way, but I just was so relieved going into this. I was carrying so much fear, but to be surrounded by other people who got it, who...

 

were able to verbalize all of the things that I had been feeling for years that I didn't even realize I was feeling. It was just, I was so overwhelmed by my relief, which sounds kind of like an oxymoron. And I remember sitting there after that going, my gosh, like this is it. Why was I so afraid to do this this whole time? I should have been doing this when I was 12.

 

Abby (35:10.104)

Why didn't I do this when I was 12 and I needed it the most? And now that I've been working in peer support with with YOWA and doing the monthly workshops and now the weekly peer support groups on Wednesdays, my whole goal is I want people to be able to feel that same sense of relief and connection and

 

I know for me, like, as we said before, a lot of us don't know anybody else with epilepsy, especially anyone our age that's a young adult and going through the same transitions and building up a career and all the same issues and emotions that come up. I just, I want people to be able to find their people. Like I found Yahweh. I want people to know that, you know,

 

there's always going to be someone in their corner, even if it's me, a total stranger to them. Love to get to know you, but there are people there who understand you. And even if they don't understand every exact detail, because epilepsy is so varied and unique and complex, that are willing to sit down and listen.

 

And I also want to, this is such a run on sentence, but I also want to help show people that you know what, even when life gets hard, even when the epilepsy gets hard, that you can still be successful, that things will get better. And here are all these people in front of you that you may potentially meet if you join that are successful.

 

and they are thriving despite it all. And I guess one last final reason. One, I kind of have to be there. But truthfully, I really enjoy doing these so much because I'm not a therapist. don't have the, like, I'm working in peer support and I want to make sure people feel supported. And I'm slowly getting the training along the way. But

 

Abby (37:36.406)

I really am going into these as myself at the end of the day and selfishly I'm getting a lot out of this too. That we are peers at the end of the day. And I just, yeah, that relief, that elation, it's incomparable.

 

Yeah, I felt the same thing because for me it was even like when we were just we were chatting that I don't know what I think it was after you first told me the Josh Hutcherson story. I'm like, wow. I wish that was me. No, not actually, but kind of like that would have been cooler if it was in front of Josh Hutcherson instead of like some random strangers. But I just remember feeling that relief. And part of it was I was like, when was the last time I actually told someone like about my epilepsy in

 

the way I can talk to someone that has epilepsy about it, right? Normally the conversation goes, oh, we're going out for some beers. And I'm like, okay, well, I have to be home by like 11 because I'm not like, have epilepsy. And then it's just kind of like an okay, like can't go to like the strobe light clubs and like, well, it's so much more than that. But yeah, it felt like the first time in a long time, I actually got to sit down and like talk to people about my experiences.

 

And I just think something so important about the peer support groups, and I can't say this enough, is it's like you're speaking to people who actually get what you're talking about. Because at the end of the day, I can talk to all of my friends and family and my boyfriend, and they all are so understanding. if I say like, I'm tired, I need to lay down, there's not like that real understanding of what that means and what that feels like to me. And it just, it felt so good to get that out and just, I don't know, it felt

 

less shameful than talking to other people about it and not that I feel ashamed that I have epilepsy, but it's like, oh, I'm going to like lay down, take a nap. And then in my mind, I'm like, oh my God, everyone hates me. They think I'm like lazy and don't want to do things. Um, but then talking to someone like you about it, it's like, well, obviously she understands and she understands where I'm coming from. it felt like, I don't know, just such a big relief. And even being at, I've only been at YOWE for a few months, but

 

Jordan (39:52.576)

It's just been so inspiring to me. I saying this to Wendy when I posted on my Instagram about the first podcast. was like, most people in my life actually don't know I have epilepsy because it's not something, and obviously everyone has their own different opinions. And we had a workshop on this on when you tell other people you have epilepsy and all that. But I'm very casual when I do tell people, but it's not something I tell people immediately. And I was like, there are so many people in my life that have no idea I have epilepsy. And I'm about to post to like,

 

2000 people like hey, this is a podcast that I started because I have epilepsy and so yeah, it kind of I feel like the peer support walk workshops that give you that emotional support and that emotional relief but for me it also just gave me the courage to live my life as myself and feel less afraid to Kind of be open about who I am and it's something I've appreciated so much and I think it's something that

 

from our testimonials, people genuinely do get out of the workshop. It's this feeling of relief and a feeling of empowerment. And it's just so beautiful. And so I appreciate all you've done for them and the way you've run them, because it just feels like such a warm and welcoming space that doesn't exist really anywhere else. And I think it's so important. so,

 

Well, thank you so much. Like I said before, it's so selfish because really in my head, I'm going into these and like, okay, what can, what do I need when I go into like, if, if I were to go into any sort of peer support, anything, my biggest fear, for the longest time is that it would be something kind of like my neurologists were. And I've, I've cycled through.

 

neurologists, so many, I've gone through so many. And I've seen every like different types of neurologists under the sun. But really, I didn't want to create another thing that was clinical. I don't know if that's something you understand, or you felt before. But it's just it's so

 

Abby (42:10.528)

I know when I go to the neurologist and I tell him, here are some of the emotional side effects of my meds, for instance, that I was feeling. it's just, I felt so stripped down, so bare. Like just, I am just a patient. Here are the side effects, one, two, and three. here you go. And I needed that human connection. And so that's always what's in the back of my mind is just, we are humans.

 

And I sometimes feel, and I felt for a really long time and I've gotten better about it, but I sometimes would feel that I'd had to prove myself more so than like any of my peers. I'd had to work twice as hard because of my epilepsy. I had to prove that like, okay, I don't have a car. Okay. Careers are going to look a little bit different. I can't socialize in the same exact ways. I can't go to that club or.

 

I had to leave the bar at 11. That I had to, I was lacking in some regard because of that. And I had to just like show up as much as I could. But really we don't. The right people will understand or at least try to try to understand and we'll hear you out. And with these peer support groups, know, you're right. I'm with other people who,

 

They already have it. I don't have to go through all of those motions of proving myself and just like, okay, here's this long explanation. Do I really want to give that right now? Or can I just pretend and lie and like, I think I'm tired. I have work in the morning. So maybe I'll just skip tonight's outing or whatever. And I don't have to wear that mask in these groups.

 

want to create a sort of environment where people don't feel they have to wear those same masks too because it's so exhausting.

 

Jordan (44:19.982)

when I turned 21, got finally my neurologist kicked me out of pediatric neurology. I'm lucky he let me stay around that long. But I remember I went to my new neurologist and this is at 21 and I was trying to and obviously like she had the paperwork from my pediatric neurologist. But like as I said, I was originally like diagnosed with having a stroke and then I was diagnosed with cerebral palsy. And so my paperwork was so messy and it's just a lot. I've like

 

very specific kind of epilepsy called Todd's paralysis epilepsy and so like I don't have a lot of feeling in my left hand and when I have seizures I'm like paralyzed after and so I remember just like trying to explain all of that to her and I just started crying because I was like trying to go through all these motions with someone that doesn't get it even though in a way she gets it but she doesn't really get it and she just like to me and she's like

 

you know you have anxiety, right? And I was like, okay, I guess I do. But then that was kind of the end of it. It's like, oh, you have anxiety about your health and about talking to people about your health, but we're not going to do anything about that. Like, that's just something that you have to deal with.

 

I finally realized when I went to my first peer support workshop, there is something I can do about it. It's not just something I have to live with where I'm like, I'm always going to have this anxiety, but I can talk to people about it and talking to people. Like you make me feel better about it because I don't feel so alone and having to explain to people like what's going on with me and all of that. but yeah, that's another very long way of saying that I just appreciate the peer support workshop so much. And I feel like.

 

they are so not clinical in a way that I don't think we ever talk about epilepsy. Like, I feel like it's the least clinical way I've ever seen anyone talk about epilepsy, because it's not like we sit there and go around and be like, this is the epilepsy I have. And like, this is this, this and this, you know, it's just about like our lives and trying to get through it. And I feel like I've gained so many tools from those workshops and becoming the best version of me that

 

Jordan (46:27.88)

I for a long time was neglecting because as I've talked about before, just the FOMO is so bad. There is, it's always a battle with myself of being like, you know, I should go home. I really don't want to, am I going to do it? But so I feel like I've gained through the peer support workshops and it's one of the reasons I'm like encouraging anyone listening to go to them is just you gain the tools to become your best self just by talking to someone else.

 

And that's, yeah, another very long way of saying that I appreciate them so much. And I think they're extremely important. And I would tell everyone with epilepsy to go to them.

 

I was wondering, last question, if you had anything you wanted to share about peer support moving forward, is there some vision you have, which obviously like your vision is constricted to maybe like what Wendy and Bonnie want, is there something moving forward that you're hoping to maybe add to peer support or even you can talk about the new weekly peer support office hours type situation? Yeah.

 

good question. I've been really fortunate that Wendy and Bonnie are actually really hands off in terms of, what their vision is for peer support. They've given me complete control. they said, you are the young adult with epilepsy. You know what young adults right now need. And truthfully, I know what I need. And so I'm trying to use that as a frame of reference and trying to keep it a bit more vague. but.

 

as I've been doing these monthlies, as I've been doing these weeklies, which are just an hour a week, super casual. You can come in as you are, you can leave whenever you want. I'm usually in bed when I'm doing them, like super, super, super casual. And, I think for the future of peer support, I want to make sure that, you know, okay, I'm going to these, I'm getting some.

 

Abby (48:36.972)

something out of it, but I want to make sure everybody is getting something out of it. And so I'm keeping an ear to the ground and listening to what everybody needs. I want to kind of tailor our monthlies to the things I'm hearing in our weeklies. And if there's something that's really reoccurring, it's like, let's address that. Let's talk about it. Let's really get in depth about it. And then also Bonnie and I are working with

 

the University of Washington's Neurology Department right now. And we are trying to get trained in PACE's training, which is an eight week program where we get to work with people individually one-on-one and kind of get the training to sort of create a behavior action plan and provide that for free, which is my, I think is my favorite thing about Y'all way in total is just that everything is free.

 

You can join these whenever you want, no cost at all, other than your bravery, because it is really scary to talk about it. And then also in the works right now, I want to create a monthly peer support group for parents and siblings with epilepsy, or parents and siblings of people with epilepsy, because that's also really super hard to navigate. And I know there's forums out there, but there's no

 

guidebook that they give you. How do you navigate the healthcare system? How do you deal with, okay, I need to really help my child who has epilepsy. How do I not neglect my other children who don't have it? Like, how do you split your attention and give every person, including yourself, what you need and have compassion for yourself? And so there are a ton of topics on that. I could talk about that for a while.

 

I won't go into that, but yes, long story short, long-winded answer, starting up a new program with PACES, with individualized one-on-one help, and then the parent support group.

 

Jordan (50:51.53)

Yeah, I feel like those are both so important. Honestly, most of my ideas for the podcast are stolen from you. like, I can talk to someone about dating because obvious gonna do a peer support workshop on dating. But yeah, I agree so much on the parents. feel like it's such a weird place to be in. I feel like at least for and I'm sure you feel the same way like growing up. I wish my parents had had that. And

 

just like the fact that the insurance that my family chooses is based upon me and my needs and that's it's not just about me but it becomes just about me because of my epilepsy. And so I feel like that's such an important thing moving forward because as many people have said with being an adult with epilepsy it's really about the community around you and I feel like you can't neglect that community also because they are what's holding you together a lot of the time.

 

So I think that's just amazing and wonderful. Well, thank you for being on the podcast. I appreciate you talking to me.

 

Gosh, thank you for having me here. I feel like we don't talk enough, Jordan. And so this was just so much fun, even though it was a bit of an interview. I got to know you a little bit more, which is always so exciting. All the listeners in, you all know Jordan is just the best.

 

Well, Abby's also just the best, so... We're all just competing here at Yallway.

 

Abby (52:23.032)

Thank you.

 

That's it really is just like the biggest I've never been a part of a workspace where everyone is complimenting each other as often as we do.

 

We really are. love Bonnie just always says that people are yummy when she's complimenting them. Yes. She's like, Abby's yummy, David's yummy. And I'm like, what do you mean, Bonnie? But I've caught on. So at first I was a little confused by why she was telling me that everyone was yummy here. Understood now. Yeah, I've just I've never been somewhere where everyone just has their own thing that they're so good at.

 

Bye.

 

Jordan (53:05.142)

and everyone can bring something to the table and it's just, everyone is so supportive of each other as a result. And yeah, I think a wonderful space to be in. thank you.

 

Thank you.

 

Thank you for listening to today's podcast. Remember to go to youngadultsoftheepilepsy.org to view our monthly workshops and peer support groups every Wednesday at 530 PST, hosted by our wonderful guest.

 

Bye!