Jordan (00:05.834)

Young Adults with Epilepsy Central Coasts interview podcast Carpe Season, a podcast hosted by Young Adult with Epilepsy to talk to other young adults with epilepsy because some days you just need to hear it from someone who understands. Today's podcast guest is Wendy Steele, the executive director and founder of Young Adults with Epilepsy, also a superstar mom. Thank you for joining the podcast, Wendy.

 

Thanks for having me. I'm so excited to talk about Yahweh. I'm good. I'm good. Just bear with me, audience. This is my first official podcast, but I'm in very good hands with Jordan.

 

How are you today?

 

Jordan (00:43.384)

Thank you. The first thing we wanted to talk about was what inspired you to found young adults with epilepsy central coast.

 

Yeah, it's an interesting question. And I think I want to do a little bit about the journey. So when my son was officially diagnosed at 18, bear in mind he had had seizures prior. And it sounds like this is often a common occurrence that in the review mirror, there were a lot of signs that things were happening. But when he was officially diagnosed and we got with an epileptologist finally,

 

we were finding that there were no resources and things were treated very much in silos. So there was the epilepsy piece, but I quickly realized and the more I did research, there's also a really huge mental health piece and I could not find anything that really addressed both of those. And I was talking more with our epileptologist who's on our board, Dr. Lagarda, and we were saying, we really need to start something up in Monterey County. And

 

We kind of put a pin in it there and said, let's just focus on epilepsy support Monterey. But the truth of the matter is, and I'll get into this with the next question, is...

 

we realized that we needed to kind of flip the script and find something that would really address young adults and address it nationally based on the interest level. So it was a fascinating journey. And the other thing that really motivated me, because it was an unmet need, is to get people to form a community and get to know people. And the more people I started talking to,

 

Wendy (02:28.704)

moms, families, and young adults with epilepsy, so many, including you, George, were saying, I really don't know a lot of people with epilepsy. I mean, we're all, you know, we're out here. In fact, I did the numbers. I thought it was so interesting. Those from age 18 to 39 in our country, it's over three and a half million young adults. So this isn't a niche, although if it wasn't a niche, that would be cool too, but this is a really big audience. So

 

It was really out of kind of a mom and just a motivated mom to create something that wasn't there. And I continue to get validated by others that this particular approach didn't exist. So that was kind of my inspiration. It was filling an unmet need.

 

Yeah, always, whenever I tell people about our project, always say that being a young adult in general is hard. having a young adult with epilepsy, something that I've found throughout my time to be so stigmatized and not understood, just makes it that much harder. And so I think, yeah, so inspirational that you took that step.

 

I'm being

 

Jordan (03:46.526)

Did you feel like there was a specific moment where you realized that having a non-profit like this was needed?

 

Yes, I mean, I knew intuitively that we needed to start something. And then I kind of went into research mode. updated as our friend and I continued. A lot of it kind of validated my intuition, but it just fueled my inspiration. So as you were mentioning, Jordan, being a young adult these days, irregardless is tough. But then with epilepsy and coming out of COVID.

 

and then and then and then. There's so many pressures. this is, I learned it is a very high risk window when young adults go from pediatric to adult care. And when they become emancipated at 18, it's just so hard. They want to be normal 18 year olds. They don't want to worry about going to bed by 10 or going out with friends and they can't drink. And I mean, it's just all those kind of for better or worse rites of passage. And I

 

I sell this data and then I did an additional pivot and I said, know, peer support, and I've seen these studies from the CDC, the power of peer support. It makes sense, right? But I thought young adults plus peer support would just be a magical combination. And what made it even more interesting is that Dr. Lagarde put me in touch with Bonnie Buffkin, who is our

 

lovely, most amazing, I call her our secret sauce. She's our president, and she's also a therapist, and she also lives with epilepsy. And she used to work with young adults. So it was one of these kind of stars aligning moments like, wow, this is just coming together so well. And that was really kind of I felt like the lightning in the bottle that all of these things were the data, the people, the enthusiasm all kind of lined up. And we said, let's go.

 

Wendy (05:47.55)

And I mean, we're only a year old, but I'm amazed at how much we've already made with you.

 

I feel like it says so much about our community, like just individuals with epilepsy in general about how much Yahweh has been able to achieve within a year and how much the community has grown. I think it just says a lot about who we are as people. But something that I really wanted to touch on was you as a mom, because you founded this for Austin. And I was wondering what it feels like to be able

 

to have this organization that supports Austin, but also other young adults. Cause I know like in the community, we kind of all feel like you're a mom. You're always, no matter what. And so what does it feel like to be able to have created something like that for young adults?

 

It's so gratifying, Jordan. It's, you know, I worked in more of a traditional corporate role in my earlier days. I'm very proud of that, but this sounds so cliche, but it's kind of one of those things like I was built for this. Like, I feel so much gratitude. I consider you guys kind of part of my family too. I think it's because too.

 

were able to freely talk about it. And I was looking for people to freely talk about how you're dealing with seizures or you guys talking to me about, you know, advising us moms and parents to back off a bit and that lovely delicate balance of giving you guys the independence you deserve and to relax a little bit. I am just over the moon.

 

Wendy (07:32.218)

The more I talk to people about it and the fact that all of you guys found us from all over the country and Canada, I just, I find it extremely rewarding and I couldn't be prouder of the team and what we've been able to do so far.

 

You know, it's again that cliche of it just touches one life, but I can already see the effect it's had on myself, on Austin. All of you guys naturally collaborating and building your own cool kind of think tank and marketing and business development, route making machine. It's just, it's wonderful to behold. And it just, it's what I hoped it would be and more. It just exceeded my expectations.

 

I think it's so beautiful seeing our community come together. I was talking to Stella the other day and she was saying that one of the main stereotypes she hears about young adults with epilepsy is that they're just not smart or they're just not capable enough to function. And I think something that I appreciate so much is not only do we have that community here to talk to each other and support each other, but we also get the opportunity to in a way prove ourselves and show, look at all these wonderful things we're doing.

 

and they get to support other people and I think that's something so unique about Yahweh that I just don't really see happening anywhere else is it's not just talking the talk it really is walking the walk in supporting those young adults in all the different ways you want to it's tangibly happening through the organization I wonder how does it feel to see

 

the community grow like this because I think even in my time here it seems like so much has happened so much more is happening we're broadening our horizons so much and so I wonder how that feels going from being about a year old like going from the infancy to now how that feels

 

Wendy (09:31.052)

Yeah, it kind of, I guess coming from high tech, it just felt so familiar to almost a startup and that we've, we all, it's funny, I'm working on this deck right now. We're presenting at the California Neurology Society on Saturday. Dr. Lagarde happens to be on our board and the president of that and what a wonderful opportunity to get in front of them.

 

just laying, it was an opportunity for me to step back for a moment and kind of reflect on what we've been able to do already. And what it feels like to me, and this is a bonding that we're talking about, even in the early days, and Stella too, it's funny, call yourself Stella, I still want to call her Dr. LaGuardia, because she's my son's doctor. But we were just saying, we need to be sure.

 

We need to brace to be able to scale. need to build this to scale. We feel so confident. It feels so organically strong that we should look for opportunities to expand. And those things are already coming along. So it's just getting that affirmation and being ready, like seeing beyond next week, but rather where do we see ourselves in a year or?

 

or five years for that matter. It's exciting because we're able to kind of, we almost talk about building the train tracks while the train's going, but we're kind of keeping our eyes very firmly in the startup mode, but we're excited at the phenomenal response we've had and knowing that this is gonna keep growing. So it's great.

 

It feels so exciting to be able to have everyone that's part of Yahweh be able to grow with it. Especially navigating being a young adult because it's not only showing Yahweh's growth but we get to show our own growth as individuals and how we're changing things and how it's changing us and just how much more we're adulting I guess you could say.

 

Wendy (11:26.258)

is, it is. Well, I mean, that's kind of one of our tenants too that we definitely want to walk our talk. Our board is comprised of people from the epilepsy community. Over 70 % of our budget, probably even more, go to creating job opportunities for people with epilepsy. And you guys are rocking it. And I guess like you were saying too, it's just, if you were to look at our team and what we do, you wouldn't, you might just assume we're just a small startup and.

 

We just all happen to be touched by epilepsy. It's lovely.

 

To me it's so amazing that not only as the majority of our team individuals living with epilepsy young adults living with epilepsy But there's such a diversity of individuals. We have Chels who does our website we have Brooke who does marketing everyone has a different skill set and I think it's just so wonderful to see that this has become a place where no matter what skill you have you can bring it to the table and help in some way and I think it really just shows how

 

diverse and stronger community is.

 

I know, and we're trying to kind of upset the status quo too because there are different ways to get work done. And I'm excited that we're leading by example. This is how you can be a successful young adult with epilepsy and rock it. And I would say too, it's so awesome Jordan how all of you guys are mentoring each other.

 

Wendy (12:59.086)

Like you were saying, people are coming with their wheelhouse, their skill set, and their interests, and they're going for it. And then you're like, yeah, I could talk to Chels about post-production, or I could talk to Brooke about social. And it's just, it's a beautiful thing.

 

such a collaborative environment. I wanted to talk about what drew me to want to participate in Young Adults with Epilepsy. And the whole original reason I found you guys was the peer support workshops that you have. And I was wondering if you could talk a little bit about how those came about.

 

Yeah, definitely building blocks. So that was kind of our inaugural launch of Peer Support. And we were trying to buy it off as much as we could chew initially. And we said, I think the first thing that would be really important to do is to create a curriculum around, or a workshop series around topics that really resonate with young adults. And we spoke to the folks that were affiliated with WeGoway at the time. We reached out to the Cameron Boyce Foundation. They have an advisory board. We wanted to represent

 

the voice of the young, uplifting community. what again is so beautiful about that is Bonnie and her vast experience of creating workshops and working with young adults really created a lot of the prototypes, but it definitely then became a great collaboration with Abby who runs these workshops.

 

And we've come up with really great topics. One that resonates very importantly with young adults is self-care. But we have one coming up next for this month, this May 1st today, is mental health and autonomy, empowerment, advocacy. All these things are important to young adults. I mean, I would argue to say they're probably important to everybody living with epilepsy, but these definitely seem to really be resonating with the community.

 

Wendy (14:55.054)

So that was the first thing and then one thing led to another and here we are with the weekly drop-ins that Abby is doing and the other thing I wanted to add is that Bonnie and I were saying we want to mentor you guys but we want to get out of the way. We want you guys to be the face of the organization. We want you to lead and represent. My funny analogy if you guys have ever been bowling is like putting up the bumpers when you aren't a very good bowler.

 

Just, we want to get out of the way and give you guys some very rough boundaries, but other than that, we have full faith in your passion, your interests, your capabilities, and it shows. So, I'm glad you found us. I mean, that's what blows my mind too, is you guys are all finding us.

 

Yeah, it I mean, I think it definitely says something about the age we live in and how social media works. But for me, I and anyone listening that's considering joining a peer workshop, you really should I remember when I first saw it, and I became interested and I RSVP and I was like, Am I really going to join like, I remember being so nervous because there's I feel like there's just so much anxiety as a young adult in general, like the anxiety that comes with

 

of having epilepsy, having to disclose that to people, which was our workshop this month. But even within that, just the anxiety of being a young adult, like, are these people going to like me? Am I going to be personable enough? Am I gonna be good enough? And for me, it was so beautiful to be able to enter that space and I...

 

really did immediately feel like I was at home and that was such a big push for me to get more involved because honestly I feel and I think a lot of people that are within the Yahweh community feel the same way that up until that point we didn't really actually understand the full extent of how we were feeling.

 

Jordan (16:57.46)

We're compartmentalizing trying to live our other young adult lives. We weren't interacting with anyone else with epilepsy So we had never I had never had that experience of sitting I remember just Austin and Abby and I talking about like we have had these awkward encounters with other people where we've had seizures or

 

I have to tell someone this week that I can't go to their birthday party because I know it's not good for me and having that level of relatability where normally I share that with someone I'm like, they're gonna think I'm so lame. And so I genuinely recommend to any young adult with epilepsy come into the workshops because there's something so special about how warm and welcoming everyone is and just immediately from the first five minutes I was there, I felt so welcome. And so I think that, yeah.

 

It's amazing and I was wondering if you wanted to talk a little bit more about how the weekly workshops are working and how they're going to work because I know those are brand new and they were a pretty big goal for Yahweh and so, yeah.

 

We thought credit to Abby to really think about this. She felt that there, and she was ready to step up and do this, that there is a need for a more frequent, just a touchstone every week. And what I love about how she's structuring this is show up as you are. And this is true even of the workshops. If you just feel icky and you even don't want to be on camera, that's okay. If you just want to listen and not say anything, that's okay too.

 

this safe, open, peer-to-peer or small peers just talking about what's on their minds that week and

 

Wendy (18:39.284)

She's had a really great success. It's not an overwhelmingly huge group. Something people feel really comfortable. And I will say as we grow, we're ready if I'm jumping ahead a bit in the future, but if we start to get even more and more interest, the cool thing is we have more volunteers on deck to help Abby. So people could still get that personal experience. And we've already trained Austin, Abby and our volunteers to split

 

up into chat rooms. just know whether it's small or big, we're ready to help you guys. And we just do want you to feel so welcome because there's nothing worse than feeling isolated. I know that Austin and Abby have said to me, they get as much or more out of these sessions than the participants do. Because it's this lovely pay it forward kind of thing, right? So we love it.

 

Yeah, there's the level of just you need someone who actually understands. And that's so much of what the workshops provide. And it's so wonderful to know if I'm having a bad week, Wednesday at 530, I can go and talk to Abby or I can go and talk to whoever's there. And that just feels so warm and like such a safe feeling to know that if I do have a bad week, there is someone there for me to talk to, which I think is so important.

 

So what do you think Y'all ways working on moving forward or what are some future events you want to highlight or what we're trying to get done?

 

Well definitely have two big marquee events coming up in the fall. So the first one is our Epilepsy Walk in Monterey. So anybody that wants to come, it's a beautiful location. It's a really beautiful walk around Lake Elster which is right by the ocean. And we want to have community representation from other groups. And we hope to have a young adult meetup in accordance with that.

 

Wendy (20:42.414)

And that, so that's on a Saturday, that's on the 19th and then on the following Monday, Stella's a big golfer and she has found a beautiful golf course in Pasadera for a golf tournament. And this will be probably our biggest fundraiser of the year. So we hope you guys can come and or be a sponsor and or just donate. I will shamelessly ask for donations because it goes to a really good cause as you guys can see.

 

So that's coming up. did you want to talk about the future? of how we're trying to look ahead a little bit, Jordan? So again, we humbly don't know what we don't know. And yet we are seeing that we definitely are getting ready to scale, as I've mentioned. We're getting all of these phenomenal partners to share our workshops through their channels, like

 

Yeah, we love to know what we're going to do.

 

Wendy (21:41.1)

NorCal Epilepsy or the Epilepsy Alliance or the Cameron Boyce Foundation. So we're getting phenomenal reach. And even as we speak, our social channels are growing very quickly, especially Instagram.

 

But we're thinking about, know, we'll survey the audience, but we would love to do things in Spanish language. We'd love to break out into specialized areas. know Stella and I were saying those that are newly diagnosed is a very like I wish Austin had that and I wish I had that. We're going to have a moms slash parent caregiver group soon, probably this summer.

 

And I think you've witnessed this too, Jordan, but at a lot of these workshops and weeklies, there are moms that drop in just to kind of vet it, to, they're like, they're young adults. And I think we all need our community too. So I'm really excited about that. And then in time, Bonnie and I were saying, the truth of the matter is,

 

and we've seen similar groups, we may morph into a broader community of young adults with chronic illness because...

 

As much as, I will say the studies do say that those that are living with epilepsy often face even more acute issues. But people are dealing with other things too, are still struggling with college and friends and dating and a lot of common things. But the truth is there are three and a half million young adults with epilepsy. So we're gonna stick there now, but that could potentially be a future opportunity for us.

 

Jordan (23:24.846)

And there's, I feel like so many people.

 

that struggle with epilepsy also have those other chronic illnesses simply just by nature of the medication we have to take or the way we have to live our lives. And I think there's something so special there about really recognizing that for a lot of us being a young adult with epilepsy, while epilepsy is the big thing, it goes beyond that. It is the other things that we struggle with that are just a byproduct.

 

Mm-hmm.

 

and yeah I just think

 

that's so interesting and so special, particularly the idea of creating like a group for newly diagnosed patients because I, I've had epilepsy my entire life. So I'm a very special situation, but I cannot even imagine what it would have been like to be diagnosed as a teenager or as a young adult. And having that journey and that uncertainty when life is happening, like these are the years where so many things change. And I think

 

Jordan (24:29.232)

with the community we have and giving that opportunity for those newly diagnosed young adults to talk to someone like Austin or Abby who have been through that process and what it's like to have to grapple with those.

 

feelings, I think it brings such a special aspect. And part of me even wants to say we do that in a way now. I think having individuals and having the support groups, it's really come everyone come and show up. And I think I'd seen that advice come out. And I think it's so wonderful to see that.

 

whatever someone needs when they show up to the weekly support groups or the peer support workshops, they're getting it because we understand and there's that level of relatability.

 

I agree Jordan, I just haven't seen anything like it out there. I mean, I was in this quest to learn and I popped into a bunch of podcasts or maybe webinars, but they were definitely more like presentations, which was still helpful. And you could do kind of some chats, they were achieved what they were trying to achieve, but it definitely wasn't a dialogue and it definitely wasn't a peer to peer. So that's where I feel like this really plays in a very special place.

 

everything else for the most part that I've seen has really been either just for individuals with epilepsy in general, which is so valid, but there are the unique struggles we have, or it's just in such a clinical setting, like every other support group I had ever experienced or tried or wanted to try was in the hospital setting or something like that and that's not

 

Jordan (26:11.444)

that's so in a way triggering for individuals with epilepsy to be going into the space that we normally associate with some of the worst things that happen to us in our lives. And so I think that's also something so unique about Yahweh is it's that little warm fuzzy community, like we join each other from our living rooms and it's not in that setting of clinical grossness, I guess.

 

That's trend worthy hashtag.

 

Yeah, I hear you about the triggering too. just, think whenever we can, how do you know what the word is? Normalize, maybe normalize. And just realize, what's it, Miles Levin said epilepsy is so much more than seizures. And it really is, there's so much more. But that's kind of the big, you know.

 

for many people probably 95 % of your life is just what you see and then there are those other 5 % things that pop up. It obviously embarrassed my person but yeah like you're saying in the comfort of your home or wherever you want to call in and you can show up as you are there's no there's no lecturing there's no guilting there's no shaming there's no

 

I think a lot of you guys too, I Austin went through so much misunderstanding, misdiagnosis, underdiagnosis. Just to not have somebody judging you or lecturing you or shaming you is, or shaming me is refreshing.

 

Jordan (27:46.444)

I appreciate all that you've done for us and our community. And thank you so much for sitting down and talking to me today. I really hope that people listening understand our vision. And I really hope that anyone listening that feels like they can relate in any way will reach out or join our weekly support groups because they've changed so many lives already. And I hope they continue to do that.

 

You made it easy Jordan, you're a very good podcaster.

 

Thank you for watching and listening to this episode of Carpe Season. Be sure to go to our website, youngadultsofepalipsy.org, to be able to join our weekly peer support groups, which are at 530 PST every Wednesday, and to view our monthly peer support workshops. Thank you.