In this episode, we sit down with Kenzie O'Connell, a golfer and advocate as she shares her journey with epilepsy. We discuss the transformative moment of acceptance, detailing how she shifted from feeling blamed for her seizures to embracing her condition with confidence. Through candid reflections, we delve into the therapeutic power of sharing personal experiences with epilepsy and how this has fostered a sense of community and understanding. Kenzie also highlights how golf has served as a platform for advocacy, reshaping her relationship with her diagnosis and empowering them to inspire others. Join us for a heartfelt discussion celebrating resilience, advocacy, and the transformative power of sport and art.

Speaker 2 (00:01.656)

Welcome back to Young Adult with Epilepsy's podcast carpe season, a podcast hosted by Young Adult with Epilepsy for Young Adult with Epilepsy. In today's episode, we'll talk to Kenzie, a professional golfer and artist who will be attending our Tea Off for Epilepsy event on October 21st in Monterey. There's a link below if you want to sign up or donate to any of the events that weekend. Now let's get into the episode.

On today's podcast, have Kenzie, a professional golfer, epilepsy advocate and artist. How are you today, Kenzie? I'm good. Just to start off with the total typical question that all these podcasts ask, what has been your epilepsy journey?

Good, how are you?

Speaker 1 (00:41.614)

Well, mine has been, I guess, I I think I can't speak for everybody, but it's been a very big roller coaster for me, I guess. I didn't know anything about epilepsy or seizures when I first got diagnosed. I thought I had a brain tumor, truthfully, just because I was not educated in the subject. think the most education I had with it was what you see on TV, right? And that's just such a...

I'm not anything correct when you see like because everything you see on TV is the same thing, you know, people falling down and shaking and there's so many different kinds of epilepsy and seizures. So it's just I was very confused on the subject and I never I didn't go about it the right way either. So I think it took me a little longer to get the help I needed and go to the right neurologist. And I was very stubborn. I didn't want to admit that I had it.

I think it was just a very complicated thing for me to accept that I had. And I think honestly still to this day, I sometimes think I don't have it and my husband has to give me a reality check. So yeah, I think it's just a really hard thing. It's just been a big roller coaster.

Yeah, I was wondering how you've come to accept your diagnosis or if you even have it this way.

You know, think when you, I have and I haven't, I think when you start doing well and you don't have one for a little while, I think you start to believe that you don't have it, right? And knock on wood, you continue in that direction of doing well and your medication is helping you and you're going on the path of, you know,

Speaker 1 (02:26.734)

whatever position you are in with your epilepsy journey of maybe being able to drive or getting a little bit more freedom in the direction that you're going. But I think because epilepsy is a brain disorder and it messes with certain things like that, either depression or anxiety or anything like that, I think sometimes we get in our own head and think we don't have it or we believe that we're cured.

when we don't have one for a long time. And I think that's where I kind of get my own head is I tend to get in the position of, I haven't had one for a long time, so I don't think I have it anymore. you know, sometimes I think that I'm almost exaggerating the fact that I have it even when I'm not. I tend to be really tough with things and I think I'm too tough with it when it comes to my epilepsy. So sometimes I think that

It's me not my epilepsy and I have to be, I have to have a reality check every once in a with that. So yeah, I think it's really hard for everyone to accept it sometimes, but I definitely struggle with it for sure.

Yeah, I know you've mentioned in a different podcast before, and I'm just wondering a little more about this, that you do have Todd's paralysis specifically. And I was wondering if that's ever made you feel almost different in accepting your epilepsy.

I don't know different is the term, guess. Yeah. Tos paralysis has definitely been challenging for sure. I think I would say that it's had a bigger impact on my recovery, I guess, with epilepsy. it's been more of a difficult roller coaster of finding, you know,

Speaker 1 (04:21.688)

how to accept it. I don't know. Yeah, that's a good question. I'm not really sure. I haven't really thought about that in a acceptance standpoint, I guess. Like, tosperolosis can just really mess with your mind in a different way, I think, than epilepsy can, even though it's connected to the seizure itself. Just because it mimics a...

stroke-like symptoms and it's just a debilitating situation and you feel very vulnerable, even though you feel very vulnerable when you're having a seizure as well. It's just a very long-term effect of something that you already are going through and they're just both very difficult things to have happen.

Yeah, I also have Todd's paralysis. You're the first other person with epilepsy I've ever heard of having it actually. Wow. And so when you said it on one of the other podcasts, I was like, Oh my gosh, like, I've never met someone else that has it. And I was wondering because like when I was growing up since I've had epilepsy since I was a toddler, I kind of just assumed that's what everyone's seizures were like. And so for me, when I got older, realizing, Oh, that's not actually

the experience everyone else has, it became like another form of acceptance. Because I just thought everyone that had epilepsy, you know, felt like that afterwards. And I'm like, no, that's not true at all.

Yeah, it's a weird sensation, isn't it? Yeah. Yeah. I've never heard of anybody else have it too. So it's really crazy to hear you say that. And I think, you know, having epilepsy and also TODS, it's a very isolated feeling. And so I think, you you discovering that you have TODS as well and then not finding anybody else, it's also isolating. think having somebody else to talk to that kind of has that experience or being able to be like, holy smokes, like, you know exactly what I'm talking about because

Speaker 1 (06:10.112)

Truthfully, there's times I feel like I'm going insane and being like, that can't be real or that's not happening. Unless you have a chance to talk with somebody else about it, because it is crazy. Your mind can play some tricks on you sometimes and sometimes you don't believe yourself.

So was wondering, bouncing off of that, how you've become confident in your epilepsy, almost in a sense of, I know a lot of us have felt like neurologists have maybe blamed us for our seizures, or almost that sense of we are to blame for our epilepsy.

Yeah, so I had to go through a handful of neurologists before I found one that didn't make me feel like it was my fault. And that's truthfully how I gained confidence because I actually did feel like I didn't have epilepsy. And I think that's where I was believing for the long, I think that's where I finally believed that I actually had epilepsy when I finally found, and that's what was just recently, this was over the last three years, where I actually started to believe I had epilepsy because I found a doctor that made me

realize that no, this isn't something that you just like caught like a cold and you have it for like a couple of weeks is something you have. And I think it's because I didn't have anybody believing in me besides my family and telling me like, no, you have it, but they're not doctors, right? They're not anybody you're going into see that's going to give you medical attention and tell you, okay, let's talk about this. And these are the tests you're doing and stuff like that. And every neurologist I went into prior to the one that I have now,

They almost made me feel like I was making up things that I was telling them that I was feeling or making it sound like, you got a glass of wine, like that's entirely your fault. Even though alcohol and stuff like that doesn't affect me, obviously to an certain extent, like I'm not going to go crazy, but it doesn't affect my, like everyone's different in their seizures and their epilepsy journey. Like I can drink, it doesn't affect me. But if I tell like my neurologist like, yeah, I had a couple of glasses of wine or something like that or whatever it may be.

Speaker 1 (08:06.67)

It's almost like they blame you and made you feel crazy or that was the culprit or, know, and I'm like, no, that's not it. Like, it's just funny talking with certain neurologists how they almost make you feel bad for having a seizure when it's not has nothing to do with you. It has everything to do with the fact that they're not either listening or they're turning and burning the patients. They just want to get one in and the next one in. And that's not fair because

It is something that you need to believe in in order to figure out every single thing that's going on with you. I found my neurologist recently, like I said, and he's amazing. He takes so much time to answer all the questions I have. And I just found out recently over the last year, I've been having really intense auras that have been leading to letting know that I'm gonna have a seizure, something I've never realized that that's what it is. And I thought I was going crazy.

My husband also thought I was going crazy because I was smelling like a gas leak every so often. I was like, what is the rotten egg smell? He's like, what is that smell? We're having a gas leak. We got to ask the neighbors. We got to figure this out. Then I finally asked my neurologist and he's like, yeah, it's an aura. Just make sure you sit down or go somewhere safe just in case. And I thought I was going nuts. I really did. So it's things like that that I think people with...

epilepsy need to feel confident in talking to their doctors about because there are some things that happen to us that kind of is crazy. Like you're not going to go up to a friend that doesn't have epilepsy or have never experienced anything like this and be like, do you smell something that smells like butt right now? Like, you know, they don't, they wouldn't know. They would be like, no, you're, you're insane. I'm like, well, yeah, obviously, but like, yeah. So it's, definitely something that is hard because I would agree with you on that. It's there are some out there that don't make you feel important.

I recently saw a nurse practitioner instead of my normal neurologist just because she was on maternity leave and I went in and I had had a seizure recently and she spent the entire time being like, well, did you do drugs? And I was like, no, I didn't do drugs and she did not believe me. And we had like a 20 minute conversation with her being like, well, did you do like benzos? I'm like, no, I didn't. She's like, did you do this drug? And I just feel like I don't understand. It's the first time I've ever like,

Speaker 2 (10:27.256)

I don't know like, you know how like they send you those like little paper reviews to fill out. It's like the first time I've ever done one of those because I was like, I've had epilepsy like my entire life. So I'm not sure why all of a sudden it could be possibly drugs. Yeah, I just feel like it's crazy sometimes just the way people are treated in our healthcare system.

You almost want to just agree with them and be like, yeah, I was drugs. Totally drugs. You're right. I don't know how I would agree, like argue with you. It's just because like you almost want to mess with them and be like, yeah, where's my chart? Like, how come it doesn't say that I have this? But yeah, it's definitely difficult for sure. I would, I would agree.

How do you think that talking about your own experiences with epilepsy has been therapeutic for you?

so therapeutic. So for the longest time, I didn't want to be treated differently or be seen as someone that just has epilepsy or be seen as someone that or people maybe be nervous to be around me. I don't know. There was just so many things in my head. I think that I thought about that would be taken a certain way. Or if I posted about it on social media and said, you know, I have epilepsy or something like that, people would be like, she's just doing it to get attention or just like, you know, there's a handful of things that

I thought about that I just wanted to keep to myself for quite a while and I didn't realize that holding it inside and only having like my there was like I have a huge family and there was really only a handful of people even in my family that really knew that I was had epilepsy as bad as I did and I almost like was resentful. don't know. I was holding a lot and I didn't even realize how mad I was about so many things. And then talking about it was

Speaker 1 (12:08.822)

just like a huge weight off my shoulders of being able to actually talk about the kind I have and talk about what happens after I have one or talk about how many I used to have a day or just the struggles and then, you know, everything. And then talking about it with people that actually do have epilepsy and go through some of the same struggles was even another big weight that's off my shoulders because then it makes you feel like.

Okay, I'm not, you like I said, I'm not as crazy as I thought I was, or there are other people that go through the same things that I do. And it's almost a nice, I mean, I feel terrible to say that because I wouldn't wish this upon anybody, but it is nice to know that you're not the only person in the world. And I know that I'm not, obviously, I know that that's not the case, because I know there's people out there struggling a thousand to a million times worse than I am. And that's also why I wanted to...

say something on my social media because I'm very blessed in the position I'm in that I can actually speak out about my epilepsy and hopefully help someone, one person, two people, anyone I can help and just having them reach out to me and talk to me about anything because I do know a lot of people that haven't told anybody or don't talk about it. I think that just

speaking out about it is something that's just really important to do. yeah, it's a huge weight. And I hope more people either hear this or see my social media and know that it's okay to talk about it. I think it's very important to do.

Yeah, I remember this was maybe two years ago now. I had told this person in my life that I had epilepsy. And I think I had brought it up with them maybe twice over the course of knowing them. And the second time they were like, why do you talk about this so much? Like, is this your entire personality? And mind you, I had literally talked about it twice. And so for a long time after that, up until maybe like six months ago, I shut down a lot about talking about it.

Speaker 2 (14:13.216)

And it's been so refreshing to see people like you on social media talking about it because it makes me feel less like isolated and small and like it's a part of me that I shouldn't be able to share with other people because they have maybe negative emotions about it or it makes them uncomfortable. And so I appreciate so much what you're doing sharing on social media because it makes people like me in the world feel like I can share and that I do have.

this sense of belonging. And so I appreciate that so much.

I I don't know who that person was, you don't need them in your life anyways. If anybody can't sit there and listen to you speak out on something that is as big of a struggle as this is, because it is your everyday. I mean, we do go through this every day. We take medication every single day, either morning and night or both morning and night. I mean, it's not something that we're not always at least thinking about in the back of our head with triggers or things like that.

It is something that we do have to deal with, like traveling, like I'm leaving tomorrow for a trip. I have to think about, I need to make sure even though we're gonna be hanging out and having a couple drinks, I need make sure I get to bed on a certain time or, know, I like, have to think about these things. So if somebody can't help you or listen to you and at least lend an ear every once in a while, then that person doesn't need to be in your life. So I think that if you can reach out and talk to somebody every once in a while and just, I mean, it's still a part of you. doesn't need to be all of you, but it's still a part of you, so.

How has being a professional golfer in golf allowed you to do advocacy and has it changed the way you felt about your epilepsy diagnosis in any way?

Speaker 1 (15:51.13)

it's kind of like an outlet. I've had it. I mean, there was a couple of times I've had seizures on the golf course and that, you know, that's not fun, right? Like you never want to be carried to the golf cart by your dad and your brother or, you know, by your father-in-law and your husband. Like there's things like that that aren't fun, but, you know, I mean, that's just part of it. I mean, there's things, but like, it's definitely, it's always been an outlet for me through lots of things.

If there's anything going on in my life, I love to go out on the golf course and just be with the sun and the grass. It's just so relaxing out there. It hasn't changed really anything with, I guess that's kind of a lie. It was definitely hard when I was at my worst, I would say, just because I was challenging to get to the golf course or do certain things that way. There are definitely different things that definitely changed for a long time.

For the most part, it's been something that has always helped me career-wise and otherwise. So after I lost my license and I couldn't drive, that's when I started getting more involved because I was flying everywhere instead of driving everywhere. So that was a big contributor for my sanity. And I think that's where golf was a big part of my life for such a long time. It still is. So yeah, I would say it's more of a savior to me than anything.

What advice would you provide to those living with epilepsy in sports? I know a conversation I've had with a lot of people even on this podcast is that due to their epilepsy and when they receive their diagnosis either their parents force them to quit sports or they quit in general. So do you have any advice on those who want to do sports and those living with epilepsy in sports?

Gosh, that's hard because I always see epilepsy, like I said, being something that you can go through some depression. I went through deep depression when I first got diagnosed with epilepsy and I was struggling really hard with my weight. I lost a lot of weight. was going through the whole, just everything. I think that having something that you can focus on outside of your seizures and your medication and your testing and

Speaker 1 (18:08.93)

Going to the doctor, like just all that stuff is really important. And that was golf for me. Now I don't know if your sport is paragliding or whatever. If you're like swimming with the sharks or I don't know what your sport is or what it entails. So like it really depends on what danger you're putting yourself in. So I could see certain sports maybe not being okay. And it also depends on your seizures, right? So I don't know. I can give some advice.

where I would say I think it's important to have some kind of sport or activity that you focus on and keep in your life. But I can't comment on all sports or everything just because I don't know what kind of epilepsy and what kind of sport this everyone is playing. But I would say something needs to be in your life just to keep you mentally stable through everything because it's not easy.

Speaking out about your epilepsy on social media and being a golfer, have you ever felt like you've maybe been put by those who follow you into that box of like golfer with epilepsy? Or have you found that kind of the people that support you and follow you have been much more open to these two different parts of your life?

I think a little bit of both. I think some people see me as just a golfer and don't really pay attention to the epilepsy part. But then also think some people see me as both a golfer influencer with epilepsy or golfer artists. I think they sometimes categorize me and just like the whole lump sum of she's epilepsy, she's this. I get a lot of comments if I don't get on, which I haven't been on social media for a while. I think sometimes

if I'm gone, like I have pretty loyal followers, they'll be like, my gosh, you haven't been on for a while, are you okay? How's your health? Like people have been invested and they do care, which is really, really sweet. And I think, you know, that's where people do see me as someone who has struggled with it for so long. And, and, but I'm okay with that, right? Like I don't think they're doing it as like, they only see me as someone with epilepsy. They see me as a whole person.

Speaker 1 (20:21.25)

but they just show concern and that's nice.

Yeah, I find that so interesting. I've always found that, well, for the longest time that I would always categorize my epilepsy outside of the whole person. It was like me as the whole person, and then epilepsy outside of that. But I think I'm coming to accept more. And I love what you're saying about like, it is part of your whole person. And it's not kind of this separate thing or something that people pay, like only attention to.

Well, I think that's going to help you mentally too to just know that people are going to put your more than just epilepsy, but it's okay to talk about. mean, you bring more to the table than just having seizures, but it's going to be good for you to speak out on when you want to speak out on it. mean, people ask me questions all the time like, I don't know anything about seizures or epilepsy.

what happens if you have one versus, and I always say just don't call 911 because I don't want to pay that bill. I mean, there's so many different things that they want to know or they don't know or, you know, it's good to have knowledge on it if you don't know. Pete, there's not, I mean, I didn't know until I had it, you know, so I mean, it's good to have spread the awareness, spread the knowledge, and it's good to talk about it for yourself, for your health. So it's always.

It's always part of you, but it doesn't have to be all of you.

Speaker 2 (21:47.936)

Yeah, so you were a golfer and now you do art and painting as a profession. What inspires you in doing that?

Well, I have always loved to paint and sketch and do all that stuff. I just never thought I would turn it into an actual career. But I was terrible at school. I'm pretty sure I barely graduated high school. But the only thing I was really good at in school was art. So I've always kind of had a little bit of a...

feel for it, guess you could say, but I always sketched and did a lot of different things like that, charcoal and otherwise. And my husband was like, you could actually do something with this if you wanted to do it. It mainly during COVID. I was going crazy with, know, my husband was actually doing something for work and I was in the corner after like a five-year-old in kindergarten showing him my sketches that I did throughout the day. So, but he was telling me I should do something with it. My mom had always told me I should do something with it.

And then my mother-in-law gave me a blank canvas, or no, she gave me an actual canvas that had something on it. She said, just paint over it and try to do something. And I ended up selling my first piece and kind of just took off from there. And I've been doing commissions ever since. actually sitting and staring at one of my commissions right now. So yeah, it's been kind of a fun ordeal and it's going really well.

That's beautiful. I love that. Do you feel like being an artist by profession now has given you maybe an independence that's hard to find having other jobs with epilepsy? Or do you think you've always kind of felt that independence of being able to kind of handle it all on your own or maybe not having to travel for work, etc.

Speaker 1 (23:31.32)

Yeah, so I've always been a very independent person. I've never liked to depend on anybody. I think that's my biggest flaw with having epilepsy. I guess I shouldn't say flaw. That's my biggest, hardest obstacle I should say with having epilepsy because I was very, like I said, I was very stubborn when I first got diagnosed. I picked just a neurologist as close to my place that I lived so I could

you know, drive two seconds down the road, even though I wasn't supposed to drive. Like, I didn't listen to anybody. They took my license. I said, okay, whatever. I mean, I was pretty bad at the time where I just did not care what people said. I would tell my parents they took my license and still drive. was pretty something that no one should do that I did, because I just didn't care. I was just telling myself the whole time that I didn't have it it was going to go away.

I think just being as independent as I am, it was just really hard for me to accept. And then I started traveling and after they like my people like literally physically took my keys away from me, I couldn't actually get into my car. I started traveling like for work in a plane. So that was really fun. And that was my.

utmost independence because I was always gone, always doing my own thing. And technically I was working for myself. I was doing stuff with businesses that would hire me, but I was the one that was conducting my own business that way. And I never really had too many jobs where I actually had a boss, which was really, really nice. So this is another one of those things where it's been a blessing because I am my own boss in this situation too.

But my husband has been such a great supporter for me. He drives, I still don't drive. He drives me everywhere and has pushed me into this direction and supported me through this whole thing too. And yeah, and I work out of my house and it's just, it's very, I'm a very lucky person in that sense where a lot of my jobs have been something where I do feel independent and thank goodness, cause I feel like I've lost a lot of my independence through having, you know.

Speaker 1 (25:47.054)

seizures and epilepsy and losing my license and getting it back and losing it again. So it's definitely difficult, right? I mean, you understand where I'm coming from with all of this.

Yeah, this question I'm about to ask might sound like a loaded question, but you're coming to our event in October, T-Off for Epilepsy. And I'm wondering if through having this epilepsy diagnosis, if in any ways you felt possibly like you've gained more opportunities to be an advocate for yourself and others. I know that's a loaded question because obviously it's not like anyone wants this diagnosis to do these things, but do you feel like you've been able to kind of

get a sense of purpose from being able to advocate from others in ways like that.

Well, so I always said growing up that if I ever had an opportunity to reach people, so I had a handful of followers on social media just based off golf and traveling and reaching people in that sense. And I always told myself if I could do something in a positive way and have a positive impact on people and be an advocate in some way.

not saying I wanted to have epilepsy or this is something that I, like you said, want to have, but I do want to help people. And that's in a sense of really anyone, right? I mean, yes, my heart goes out to everyone who has epilepsy, but people go through so many struggles with so many things. And I think just having my platform

Speaker 1 (27:27.274)

and saying like speak out on behalf of epilepsy or it's okay to talk about or you know these are the struggles I go through and that way people can understand you know they go through a lot of struggles too. think it's good and important to have other people go my gosh like I have this it's not epilepsy but it's also something people can't see that I have every day. It's nice I'd like to talk about what I have too and I think just having everyone's human right and I think

Just being able to have a little bit of a platform to speak out on behalf of that, does, yeah, I do agree with what you're saying and I am really excited to come and spread awareness.

excited you're coming. I have no idea how to golf so I'll just be there for fun. Before we go, is there anything you want to shout out? Instagram, socials, or any other events?

Perfect.

Speaker 1 (28:17.464)

just excited to come support you guys and it should be a great time. I like that it's young adults with epilepsy. think sometimes it's not as aware of how we still go through a lot of struggles and I think it's going to be a very important event and I'm excited to support it.

Well, thank you so much for being on the podcast today, Ken.

Absolutely. Well, thanks for asking me.

Thank you for listening to this episode. As a reminder, we have links to our weekly peer support programs every Wednesday at 530 PST in the description, as well as our monthly workshops for young adults with epilepsy and all of our other resources, as well as a donation page if you want to donate to keep our lights on and keep continuing to provide resources for young adults with epilepsy.