Join us today as we chat with McKenzie, a student and writer living with epilepsy. She shares her powerful journey of undergoing brain surgery to manage her condition, navigating life through homeschooling, and finding inspiration through independently travelling through Europe. McKenzie is now writing a novel that beautifully explores the challenges and joys of loving someone with epilepsy. Tune in to hear her story of courage, creativity, and the impact she hopes to make through her writing.

McKenzie (00:00.078)

that I was feeling like I am a burden to love and it's hard to love me. I kind of wrote it to be hopeful for myself and for other people. was like, hey, there's still love that exists even when this is a really hard thing that's happening.

Jordan (00:21.006)

Hello and welcome to Young Adult with Epilepsy's podcast carpe season. A podcast by a young adult with epilepsy for young adults with epilepsy. Because sometimes you just need to hear it from someone who understands. On today's podcast, we have Mackenzie, a volunteer at Yahweh and a fellow young adult with epilepsy. How are you Mackenzie? I'm good. Just to start us off, what has been your epilepsy journey?

Great, how are you, Jordan?

McKenzie (00:47.246)

Yeah, well, it's been a really long journey for me. I was diagnosed when I was three. And so pretty much my whole life has been dealing with my epilepsy. As I got older, my seizures kind of got worse, both in severity and frequency. And I was on multiple medications that weren't managing them. And when I was about nine, I believe, I had a seizure in the pool and I could have drowned. And this was kind of when my parents were like, need to

really get on treating these and what can we do? And I ended up having a having brain surgery that fall. And prior to surgery, I was having seizures multiple times a week, if not every day. And after surgery, I was seizure free for two years. And that was really exciting that brain surgery was able to do that for me. But then starting middle school as if middle school isn't already like

tumultuous journey for everyone. I started having seizures the first week of school and then every week after that. And what we noticed was on like winter break and summer break, I stopped having seizures. And so we kind of figured out that it was the classroom setting that was triggering them. One of my biggest triggers is spatial awareness things. So the size of rooms, the lighting in rooms. And so we

switched to online school at that point so that I could feel less anxiety and have less seizures. And so I was online schooled from seventh grade through the end of high school. And throughout high school, I actually got to do this really cool thing, which was dual enrollment and take college classes and get high school credit and college credit for them. And so I graduated high school with my associate's degree done.

And then I also was able to go fully back to in-person classes my senior year of high school. So two wins for my, my epilepsy journey there. And then right now I am on a gap year in between high school and college. And I was fortunate enough to be able to travel around the UK and Europe, solo travel around them for a couple months. And which as someone living with epilepsy, and I'm sure you've probably had this experience too.

McKenzie (03:15.214)

I'm so used to always being told that I need people there with me to be safe. And so being able to have that like sense of independence and be like autonomous, I guess, was really so impactful for my mental health and my sense of confidence. And yeah, so we'll see where college takes me.

that's so relatable, just the kind of the sense of independence that you want to feel. feel like that's something I've always struggled with because you always feel like you need someone around you just in case something happens, which is I feel like kind of maybe not the best mindset for me to have, but I do feel that way a lot. you know or have they figured out why maybe your seizures got worse? Because for me,

when I've had epilepsy since I was really young and when I was in high school I hadn't had a seizure for like two years and so they're like, we're gonna take you off your meds you've grown out of it. That made my seizures significantly worse and more frequent. Was do you know if there was any reason for that or was it just like an age progression?

think it was just an age progression as far as I know. And we, I mean, we just didn't have the medications figured out then either. But I think as far as I know, it's just kind of an age progression.

So do you feel like being homeschool affected, like a feeling of isolation, or were you able to find kind of communities and groups outside of that, whether that be within the epilepsy community or just in general?

McKenzie (04:53.472)

I definitely felt isolated doing online school. I think by the nature of Uplupsy, there are already a lot of activities that were kind of isolated from and the sense of driving or going to parties, drinking, these kinds of things that our peers are doing at this age. And then because I was additionally taking a different academic route than the rest of my peers, I felt even more different and isolated from them.

I did, and I still sometimes do feel like I had to disclose this part of my life that maybe I didn't want to at certain points of time because people would be like, well, why are you so ahead academically? Or why weren't you in school today? And having to share that, which then also made me feel even more isolated because I was like, well, I'm having to admit why I'm different than you are. But I feel very fortunate in the sense

that I had extracurriculars to do. So I was on the cheer team in high school. And so I had a really good support system there. the high school that I would have gone to if I wasn't online schooled was like, if you want to come to lunches, you can come to lunches and you can go to school dances. And I was at sports games, which was really helped with that sense of normalcy, I guess, and feeling just being social.

And I also just have wonderful friends who were so inclusive and so thoughtful and were like, hey, we're going to do this today and let me come pick you up and bring you along to this, which I really appreciated. And so it was definitely a lonely journey at times, but also really rewarding and really, I'm really grateful for the support system I had in my friends. And this was prior to having Y'all Wage Your Support Group, or

me knowing about them. And I think had I had this kind of support in high school, that would have been like game changing for

Jordan (06:56.75)

Do you feel in a way that being someone with epilepsy that has had brain surgery almost makes you feel another level of isolation? Because for me at least, I now know a significantly larger amount of people with epilepsy than I ever had in my entire life. But also, you're the only person I know with epilepsy that has had brain surgery. So do you feel like there's almost an extra sense of having something that other people don't have, if that makes sense, or something extra to share in what you...

feel I guess like you can bring to the table or what makes you different or feeling isolated just within that aspect.

Yeah, I think I might have felt more isolated in that regard. But recently in some of the Yahweh peer support groups, there's been another girl who's our age and she is about to have brain surgery. And so we've kind of connected over that. I feel, I don't think I really thought too much about the fact that these other people, young adults with epilepsy that I was meeting hadn't.

had brain surgery, but I think had I continued to progress and I was like, no, and you can relate to this. then I think maybe it would have felt a little bit more alienating, but it also was a really long time ago for me, 10 years, which makes me feel really old to say, cause I'm not that old. But I think, yeah, I think it has been really, really validating.

to meet someone else who has it, but definitely I think it could be isolating to not have someone that can relate to that part of my journey.

Jordan (08:40.504)

And that's one of the amazing reasons that we love having you as a volunteer because there is that extra level of relatability. I talk about this a lot, but I feel like something so key to y'all way is that pretty much everyone has a different type of epilepsy in some way. And so we all can give that relatability in different ways. And I think that's so important when we're trying to reach out and get to those groups. Can I ask about the book you're writing? If you want to share about that.

Yes, I love talking about my books. I'm so happy you asked. I am a really big reader. I average like 52 books a year, if not more. And I was kind of at the end of middle school, of high school, realized I've never read a book about a girl who has a blood spleen. And representation is really important. And at that time of my life, I was very much questioning, well, why do I have

seizures and why do I have to feel this way and kind of going down that rabbit hole of why me and I was looking for that epilepsy representation in the books that I like to read and it was really hard to find any and then when I did find some they were just not really ones that interested me and I found a lot of solace in writing throughout my life and so I kind of

found a sense of purpose, it sounds cheesy, but I found a sense of purpose being like, I've had this experience and I love writing. And so this is what I should be doing, is I should be putting that epilepsy representation out there that I wanted to see. And I'm on my fourth draft of this novel. And so I really should have a better pitch for it now. But what I've been saying is that it's just a young adult romance about a girl learning to navigate the world for happiness.

her relationships while living with epilepsy. And it's been really important to me in the process of writing this book that I write for other little girls and young adults living with epilepsy to know that you are worthy of love and you are not a burden to love. Because I think we all need that reminder sometimes. And yeah, that's been kind of my mission and I'm hopefully.

McKenzie (10:59.18)

My goal is to start querying for agents and starting the publishing process starting in September. So I'm getting close.

seems like, it's so exciting. Do you, I guess maybe I don't, you don't have to share anything personal, but elaborate maybe more on kind of like why you made it a romance book. Cause I know for me that's been a struggle I've had in the past dating and being in relationships. And I've always like, I feel like I'm becoming a burden on this other person. And Austin and I had talked about this on his episode, but there is a level of like epilepsy is an illness.

that can traumatize other people, right? It's something when someone else sees you having a seizure that can really traumatize them. And so there's that extra layer of, well, I don't want to traumatize this person that I love and care deeply about. So could you maybe elaborate more on why you made it a romance or if there's anything personal there that you don't have to share?

I found it really important for that reason is I also just found that in all of my relationships in life, romantic, but also in my friendships and in my family relationships that I was feeling like I am a burden to love and it's hard to love me. And I just felt like if I feel this way, someone else has to feel this way. And as you just mentioned, you and maybe Austin have also felt this way.

So I just wanted to, kind of started as just writing it as a reminder to myself of like, hey, you can be loved. And then it progressed into like, my gosh, maybe other people need to hear this too, because I think it can be, I wanted to try and write about that relationship of being the one with a disability or a chronic illness, but also being on the other side of that and loving someone who has it because both are really hard and nuanced in their own ways.

McKenzie (12:52.022)

And I think even sometimes it can be harder to be the one watching someone you love struggle. And so just, I kind of wrote it to be hopeful for myself and for other people as like, there's still love that exists even when this is a really hard thing that's happening. So yeah.

That's beautiful. I love that. So what caused you to, I guess, join Yahweh? Curious how you found it, kind of what drew you to it? Because I feel like everyone has similar but different reasons that they're here.

Yeah, I found it through a Cameron, Cameron voices Instagram. And it was back in March, I believe, and they were advertising the workshop that was going on. And I was really excited because initially the topic that it was on, I believe it was on autonomy and epilepsy. And I was like, this is what I'm writing about. And this is, I don't know anyone else who has epilepsy. So I want to, I want to go.

be a part of this conversation. And I was really, I remember my hands were like shaking as I was introducing myself when I joined. I was so nervous to be there because I didn't know what to expect. And I didn't, at that point in my life, I didn't very often talk this candidly or this vulnerably about my epilepsy or this part of my life. And so to be joining a group of strangers, was like, um, I'm a little scared, but I remember I was in

so much awe at the way that other people would share their stories and their experiences, even when you could hear their voices shaking. And throughout my life, I'm sure you've experienced this too. People have said to me like, hey, you're so strong or you're so brave. And I've never really felt that way. I was just like, I'm just living how I have to live to get through every day. And so I felt kind of a disconnect with those words, but being in that pure support.

McKenzie (14:53.07)

group, felt courageous. I was like, I'm doing this for myself and I'm being honest and I'm being vulnerable. And I felt understood by these other courageous individuals. And I was just so inspired and touched hearing from everyone. And I emailed Abby as soon as it was over and I was like, Hey, how can I get involved? How can I help? I just.

I was so, and continue to be so inspired by the team of people at Yahweh and by the participants who joined the support groups. And I think that's why Yahweh is so important in the same sense of that representation. It helps us understand ourselves better and with a disability that is largely invisible. And so it's harder to find those people.

Yeah, as the grant writer for Yahweh also, I use your testimony testimonial a lot in my grant writing because I think it's one of the most powerful ones we have. And I appreciate the way you have been able to put kind of the way we all feel into words. Do you have any advice for anyone that is kind of considering joining the workshops?

but are a little nervous because I think every single person has said this on the podcast that the first time they joined, they were so scared and they were shaking and they really were like chickened, like Abby and I both almost chickened out. Like the first time we did anything, both of us were almost like, maybe we just shouldn't do this. And then obviously we're here now, but is there any advice you'd give to people that are considering it but are nervous?

Yeah, I would say join. I know that's not helpful, but even when like everyone, like you said, is scared to join for their first time. But everyone, and I truly sincerely mean this, it's the nicest group of people like I've ever met. it's so like going in one time, Abby is so wonderful because she often will say in the peer support groups, you don't have to say anything. If you don't want to talk and you just want to listen.

McKenzie (17:00.578)

Like if that's how you join, I think that you get value from that too, just knowing that there are other people out there experiencing the same things as you, even when they don't have the same kind of epilepsy as you. Like you said, Jordan, a lot of people, all have different, epilepsy is so individualized. so sometimes people will say something and I'm like, well, I don't have those kinds of seizures, but I relate to that kind of experience or that feeling that you're having. And so even if you're just listening,

in the peer support group and knowing that, I'm not alone in this experience, think there's that. So I would say join. I promise everyone is really nice and encouraging. And I think you'll be pleasantly surprised by your experience.

Yeah, feel like, yeah, there's just that aspect of even though epilepsy is so individualized, like everyone is truly feeling the same things for the most part, just having epilepsy and that isolation and pretty much everything we've talked about. And yeah, I remember the first time I joined, there was someone that just sat there and listened. They didn't even have their camera on. They were just.

there to listen and I think it's so important to know that that's like we're totally okay with that because we want it to be a space that's accommodating for everyone and what they need. And I think that's kind of like the big thing is really you show up in whatever way you want and that's so fulfilling and important to just be able to meet people where they are. Can I ask about college? Like, how are you feeling? Are you nervous? I know as someone that has been through college, I feel like

I'm always so curious about how people feel going, because I know for me it was obviously such a scary experience and yeah.

McKenzie (18:44.478)

I'm really, I'm really nervous. And I think I heard like Abby and many other people in peer support groups too, I've kind of talked about that college was a big learning curve, having epilepsy. And I, but I think I'm ready to, I'm going in with realistic expectations that like, we're going to see how this goes. But I am really nervous, especially because I've done so much of my schooling online.

to be going to college and being in person. Like I only have a year under my belt of recent schooling where I was okay. So I'm anxious about how that's gonna go. And I think there's so many social things too that play into that anxiety of with having epilepsy. But I also feel more prepared than I think I would have felt last year had I gone straight into college just because I did have that traveling experience and I kind of

jumped into the deep end with living by myself and having to be independent and make decisions. So yeah, I'm really nervous, but also I hope optimistic. And I know that at the end of the day, I have a really strong support group with my friends and with Yale. And I think that is like the most important thing to living with epilepsy and thriving.

I mean, I promise you'll find the right people. It's like, you'll find the people that accept you for who you are and everything that comes with epilepsy. I feel like for me, and this is, I don't know, this is maybe unsolicited advice, but you'll find the right people because there'll be, you'll find people that won't accept like the idea of drinking less and needing to sleep, but you will find the right people and those are the people that you'll just keep forever in your lives. And they're so important just in general.

So on like a more nice random personal note, I was just wondering since you love books, what would be your book recommendation for people listening to the podcast right now?

McKenzie (20:51.746)

there's so many to go with. My favorite book that not a lot of people talk about is called These Impossible Things by Selma El-Wardani. I think she is a incredible writer. Like her writing feels like poetry, but it's also very accessible. think sometimes really good writing can be a bit hard to read. But, and her book is just about...

your female friendships and navigating being a young adult and relationships and family dynamics and religion and living on your own. And so I think it's very timely for other young adults and just really well written.

I love that. I have read a different book by her, but I haven't read that one. Do you have, I guess, since it seems like something that's been so important on your journey and something that you've done in almost an extreme way, I would say, do you have any self-care tips for people that are kind of navigating? Because I know something we're seeing is there's also a large group of young adults coming in that have just been diagnosed. And I think that

there, there's kind of this feeling of I don't know what to do for myself. And obviously, for you, you've found the things that work and the things that make you feel okay at the end of the day. are there any tips you have?

I'm trying to think, I think it is so individual with what helps you feel better. kind of things that reading has been, not to really push this on everyone, but reading has been so impactful for me just because it's so low stimulation that if I'm not feeling well, I can just lay in bed and read and it kind of calms my brain down. think I've found

McKenzie (22:45.582)

Journaling really helps to kind of unpack everything that I'm feeling when I'm really sad or down about something that I can't do or something that went down. I think that's been really helpful. I love playing instruments. I think that's one of my go-to things is I'll just play the guitar and I wouldn't say I'm that great at it, but I think it's really important to have the things in life that

just make you happy or make you feel calm even if you're not good about it, good at it, I guess. And I'm trying to think if there's any like really epilepsy specific ones, just don't feel bad about if you need more sleep or more quiet time. Because I think oftentimes I've felt very, I don't know what the right word is, but I've, I've

tried to guilt myself like, I should be doing something with friends or I should be working on something productive when I really need that kind of decompression time. And so that don't feel guilty about that. And also just experiment with what makes you truly feel good and not what you think is going to make you feel good. Yeah, I don't know if that was helpful. What do you do for self care?

What do I do? I mean, I try to journal. That's like very helpful for me when I am actually doing it. That's one of the things that I'm like kind of bad at doing. I like say I should do it and it does make me feel better. I don't do it that often. I'm like a really, I'm a big believer in doing things that you like, even if you're not good at them. Because there's like, I feel like there's a different kind of joy in doing something like that, even if you're not good at it. So for me, I love playing tennis. I'm so bad at it.

Like, I'm not so bad at it, but like, I, you know, we maybe get two hits in for each game. but so for me, it's kind of moving and doing that. And for me, I, have moved. I'm living in San Diego right now. I'm, I normally live in Boston, but I'm just here for two months. just due to my lease or whatever, but I feel like being here has been so different because there's so much less pressure. like.

Jordan (25:01.15)

not this sounds so weird, but like I really don't have any friends here at the end of the day because like they've all moved on from like everything like everyone's either still in college or they're doing different things in their lives in different cities. But at the same time for me, that's been so such a good journey of self discovery because I'm here by myself, I have to cope with myself in a way where I'm becoming better at understanding how I'm feeling without those external pressures of other people on me.

I mean, I love my friends, like I miss them so deeply, but there is something so nice about kind of having the time to yourself, like fully to yourself, and I've really appreciated that.

I was gonna say, can I ask you a question? I felt when I was in England traveling by myself, I kind of had this realization that I felt like I was behind my peers in terms of discovering, in terms of self discovery, because I think it's something we don't think about a lot, but when 16 year olds get their license and they can drive, they can all of a sudden make these decisions about how do you want to spend your day?

I want to go grab this snack or go out to coffee. I'll just hop in the car and go there. And at least I lived in a, or I live in a city where it's not walkable and there's not a lot of public transportation. So I kind of didn't make those decisions. And so then all of sudden being in a city where there's a lot and very reliable public transportation, was like, I can do anything I want today. And I didn't have my friends there with me. And I was like, I don't know what I want to do.

Do you feel like you've been finding yourself later in life and finding those things that you like to do later in life?

Jordan (26:49.684)

Yeah, I think the two big things for me was when I, so I live in San Diego, which does not have public transit. And then for my undergrad, I lived in Denver, which also didn't have public transit. So moving to Boston is like the first city I've lived in that has a good public transit. And it did give me a different sense of I can go places without having to ask someone to come pick me up or drive me. And that's always been my big thing because I feel like there's this weird

connotation with needing a ride from someone and a lot of times like that it's childish in a way, if that makes sense or like there's so much dependency on others. And I know that at the end of the day, like my friends don't mind giving me a ride. But to me, it's always felt like I've been a burden. so having that I can go wherever I want whenever I want sense of public transportation has been such a big thing to me.

And then more recently with moving home, like I did my undergrad straight out of high school. I graduated high school at 17. So that was a whole different situation for me. That's like a whole different podcast. But like when I went to college, I could not like sign my own paperwork for the doctor. And so like anytime I had to go to the doctor, they had to like do like faxing with my mom and stuff just because I was so young, but I went straight to undergrad. And then from there, I went straight into my master's degree.

And so I just graduated from that in May, but so now there's this whole new aspect of, feel like I've clung onto that identity so much and made that my primary identity that I do academics and I have these degrees and I've just been doing philosophy for the past six years. And so for me, I feel like now it's kind of a, who am I really? And that's in some ways probably my fault for making that my entire identity.

But I feel like there is all of a sudden I have this freedom to be like, who am I really? And now I get to do fun things like the podcast and peer support workshops and all of that. And so I feel like there is a sense of freedom being an adult on your own that I definitely hadn't had for a long time. And it just feels.

Jordan (29:07.35)

I know, I feel like I'm really learning who I am as a person and what's important to me. And something really big that's happened in the past two months being graduated is I feel like I've understood myself as a person with epilepsy more. And I think that's something that you don't hear a lot, but having that time to myself and having, and not just like having that go, go, go all day, I'm really learning in a much better way how to listen to my body. And I felt so much healthier and so much better in these past two months, just.

taking the time for myself, which I never had the opportunity to do before. And so yeah, I guess that's my very long-winded answer to kind of having that newfound autonomy as someone that's like literally finding it as a 23 year old.

Yeah, I'm glad you feel that way too, because I was like, I feel like I'm behind and I know kind of this age range that we're in is everyone's kind of figuring out they're discovering themselves and what they like to do. But I did definitely feel like less of an individual person for a long time in my life because like growing up.

with when I was like in elementary school, remember I had to have like a bathroom buddy. Like I couldn't even go to the bathroom by myself. I had someone coming with me. And so I'm so used to, like, if I wanted to go to Target, I'd have to be like, hey, text one of my friends or my family and say, can you go with me? Drive me there. And so I've always kind of understood myself in the sphere of other people around me. And so.

having that like sense of like, yes, I'm my own person and I can do things by myself was really life changing for me. And I'm glad that you also are having the same kind of discoveries and it's scary, but it's also really exciting, I think.

Jordan (30:53.46)

Yeah, one of the biggest things for me and this is just like such a tiny thing, but like being able to go get coffee by myself instead of being like, can you drive me there? I can just take the train like to go get coffee by myself. And it's just little things like that, like things that I don't want to say like people that

don't have a disability that makes it so they can't drive take for granted but in some ways like it is like I am finally getting to do those little things that I feel like everyone else does by themselves I get to do them by myself now and I think that's been such a big thing and Just for me moving to a city that has public transit. I don't think I'll ever again move to a city that doesn't Just because of the freedom it's given me and I really feel more like an adult that has autonomy over myself than ever

Well, I guess my parting words are that I appreciate you being here so much. Everyone at YOWE feels like you're such a light and you've been such an amazing person to have simply because you've definitely, as someone that is more extroverted, you bring a light to peer support workshops and being able to reach out to the community and give other people the opportunity to chime in and a voice. And I feel like you've made other people feel more comfortable.

And I think that's so important and I appreciate that so much from you. And I'm so excited for your book and just everything that's coming for you. So thank you for being on the podcast.

Thank for having me.

Jordan (32:21.752)

Thank you for listening to the podcast. Go to youngadultswithepilepsy.org to view our upcoming peer support workshops or to sign up for our weekly peer support groups at 5.30 p.m. PST on Wednesdays.