Chels (05:31.348)

Yeah, and I think everyone can really relate to why she had a seizure that day, like saying, you know, she pushed herself a little too hard because, you know, Josh Hedgeson, how often is he on campus? And I know I've definitely done that for events I want to go to or just in general, something I don't want to miss out on. And, you know, thankfully when I have and I've inevitably had the seizure at the end of it, there wasn't, you know, some famous actor or something helping me. But

 

They're real people too, they wait for the ambulance with you. But yeah, I think it's such a powerful story, as you said, for her to share because A, it kind of breaks the ice because we're like, we know that guy, that's PETA. But it's something we can all relate to at the end of the day.

 

Yeah, I was, it's something that comes back to me a lot that I think about a lot. The other day on Monday, yeah, Monday was the Boston Marathon and I slept awfully because they do this thing in Boston called the Midnight Marathon and I live right on the route. Like it goes right by my front door and right by my windows and they do this thing called the Midnight Marathon where all the cyclists of Boston ride the course at midnight. Like there's speakers bumping music and stuff.

 

And so I slept awfully because there was people out like riding past my apartment with music till 2 a.m. And then everyone was getting up at 6 a.m. because, you know, they have lots of police officers and et cetera that they have to set up for the Boston Marathon. And so I slept awfully. And then I had someone I knew running in it. So I was like, I feel so obligated to go out and cheer for him. But after standing outside for five hours and I had gotten six hours of sleep, I was like, this is not it. But luckily I saw him and went inside. But it is something that I think.

 

is a decision we have to make quite often about how far we want to push ourselves and what we think is safe. And there's definitely situations where I think everyone would rather meet Josh Hutcherson than take care of themselves and maybe go home. So very relatable. I think I would do the same thing in that situation, unfortunately.

 

Chels (07:34.078)

Yeah, I'm right too. But I just I want to bring up our little poll that we had on our Discord because if nobody knows, we have a Discord and you should come join it because it's a really nice sense of community we have. had a really after we're talking to Abby about that, we kind of had the question of, you know, if I were to have a seizure in front of a celebrity, who would I want to have a seizure in front of? And do you remember who the winner was or like the best answers were?

 

Well, I know I picked Barack Obama, but I know that wasn't the winner.

 

No, but I think that was an excellent one. I picked Hugo weaving just because he has epilepsy and I find his story really inspiring, but someone picked Oh, of course, I've forgotten his name now. Do you remember? Shashank Redemption Wait, is he even in that?

 

No.

 

Jordan (08:25.262)

There's only the good Patrick Bateman and I don't think that's who you are.

 

Okay, that's not it.

 

Can I scroll that far back on Discord? Let's find out.

 

Jordan (08:38.328)

Hugo. Let me search Hugo. Okay. Here we go.

 

Morgan Freeman Which maybe maybe Abby picked that one I'm not sure but I just think that was the best answer because like that is a chill voice you wake up and he's like Hey, you had a seizure. You're fine. I feel like yes Morgan Freeman like I Do feel fine. Thank you

 

yeah.

 

Jordan (09:08.748)

I will say in the poll, Barack Obama did win, so I was not alone in my feeling that Barack Obama would be the correct person to have a seizure in front of.

 

Get it?

 

Chels (09:19.692)

Yeah, no, was definitely, definitely a good choice. And obviously the audience agrees.

 

Yeah, it's such a fun little question and I feel like it's just one of those icebreakers because every single person has that relatability. And I think that's one of the reasons we loved having Abby on the podcast and her episode is one that people go back to a lot, is she is just so relatable and the way she talks about embarrassing things and adding her little jokes and flourishes makes it quite the fun episode. The next clip I had was Mary, my mother.

 

talking about side effects in medication.

 

Do want to go first on this one?

 

No, but like roll clip. Epileptic journey is a lot of medication. Not everyone's seizures are controlled by the same medicines. There's a lot of different medicines and different class types and chemical compositions that will react to different situations. You know, over the years we discovered you got to read about the side effects. You got to read about the medicine, but you've had medicines that gave you hives. You've had medicines that gave you sleep issues. You've had medicines that gave you kind of

 

Chels (10:29.39)

focus and mental acuity issues. For my brightest kid in the room, that's a little startling. I love that podcast, that episode talking with your mom, because she just brings such a different perspective, especially with you being diagnosed so young that, you know, she kind of had to go through and figure stuff out kind of without so much, well, with the internet, but with a lot less resources than they are now. And I found that really interesting, but probably really, really frustrating for her.

 

and then having you have all these different side effects and... Side effects are the worst. Like, yeah, I'm rambling, I'm sorry. This is why I edit the podcast and I'm gonna edit myself to sound really cool in post.

 

I think obviously it was about me, so like I have certain feelings towards it, but I think there's two things about this episode that I really liked specifically my mom being on is I think I was talking to some people the other day about this and there's so many people that I hear in discussions that are like, my parents won't let me do anything. Like my mom won't let me do this, won't let me do that. And when I filmed that episode and I say this to people a lot, I have the opposite of a helicopter mom. You've met my mom.

 

She like asks very little of me in relation to my epilepsy and she very much has always wanted me to feel like I'm not different within reason and I think she's done a great job doing that and I think so. Part of the reason I wanted to do that episode was selfishly I love my mom and I wanted people to see my mom but also I feel like she can provide a good message for other parents just having to go through it by herself in a time where I mean there was the internet there wasn't a lot of internet.

 

It's not like people online were talking about epilepsy. And so the way that she was able to kind of figure things out, but also not suffocate me, I feel like is something so beautiful. But in relation to side effects specifically, I found that clip so fun because it's a story my mom and I love to tell all the time. Specifically, the clip was about one of the medications I took where

 

Jordan (12:40.264)

I apparently stopped doing well in school. I don't remember that, but I do remember in one of the other stories we told in the episode was about when I took medication that made it so I couldn't sweat. And so my body wasn't releasing any heat. And I just so distinctly remember, especially as a child, I was probably like 12 when this was happening and it was happening for months. And for the first few months of it, was

 

you're doing something wrong. Like, what are you doing? Why are you like, running around so much that you can't like that you're beat red and like not breathing. And eventually it just took another person saying to my mom, maybe it's a side effect for it to change. But I think it did teach me something even though I was 12. It's it's taught me down the line down the road of my life about advocating for myself. Because that was kind of the first time that

 

I ever did have to advocate marriage for myself and at the end of day it came down to someone else saying it to my mom, not that my mom doesn't care about me or want me to be okay, but it kind of taught me like, there can be significant repercussions to this medication and has helped me down the line knowing when I don't feel okay, when to say something about it. So.

 

Yeah, and honestly that podcast really helped me too, like that clip, because I kind of had that issue at one point and I had never thought that could be really, and like I've joked, like in the past, not now, different medication, that I don't really sweat and my body just overheats and it can't let go of that heat. And then you had that podcast and I'm like, okay, maybe mine's not to that degree.

 

But maybe that's what was going on with me too. We'll never know, I'm not on it anymore. But there's such a wide range of side effects and it's such a good point. You really have to check in with yourself and I know for me having a journal really helps. But I'm just tracking all those things. But I mean, each medication really just works differently for every person as... I don't know if I can add this to the podcast, but if you are an IRL, I won't name it, but you and I...

 

Chels (14:50.798)

You're on a medication that I was previously on and I know for you you love that medication and it works for you For me, I wanted to crawl into a hole But It was like you just everyone has such different reactions and the side effects are such a wide Range that you really just want to make sure you're reading up on everything you can because you know reading the top 10

 

Side effects are tiredness and seizures, which is always kind of funny to me, the side effect of the seizure medication is seizures. You know, maybe anxiety or mood, but you just, you you really get those top ones and you don't think about all those ones that only 1 % experience.

 

And I feel so lucky that...

 

for me, I went through so many medications as a kid and I was very lucky that I had parents and I had a neurologist that listened and didn't ever kind of give me the ultimatum, I guess, or the statement of, I know a lot of people have heard, well, they're side effects, but you could be having seizures instead. And I don't think that's the way to look at it. And I was very lucky that growing up when I was having such severe side effects from all the different medications I was taking and the ones I was trying that

 

I did have a neurologist and I had parents that were like, no, this is not okay. Like just because it's controlling your seizures doesn't mean that we want this to be her quality of life. So I am very grateful that I never really got that, you know, kind of statement of, well, at least it's controlling your seizures. So you should just deal with the side effects.

 

Chels (16:25.216)

Do you ever have the opposite of that because sometimes I'm the one who's like I don't want to go through the six months to a year process of changing a medication So if I'm like need 10 hours of sleep or 11 instead of eight, maybe I'll just put up with it

 

Yeah, I did that recently because I'm on two medications and I got on the second one because the first one was causing me to be really tired all the time and then I started having breakthrough seizures at some point and they were like, here are your options, what can you do? Like, which one do you want? And it was very great because I was very well informed and they asked me like, you can either increase this medication or this medication, this is what would happen with both. And at the end of the day, when I was super tired,

 

and was on that one medication that was my longest period ever, seizure free. And so I was like, actually, like, I will increase that again, and maybe I will become more tired. But I know that having that at a higher dose did keep me seizure free for three years, I think. And that was something that I wanted again. So yeah, there is sometimes you just bite the bullet of the side effect, especially if it is a met like the medication that does work for you. So

 

You were actually the first person I've ever seen have a seizure and a like, thank you. I don't know. Thank you. I know like just what I meant was like, it's so interesting seeing it from you look all smug now like, he's no good at this. This is why we hide her in the basement. But

 

It was just so interesting to see that, and interesting in a bad way that I wish you hadn't. But if you had, A, I'm happy to be there because like, I know kinda what you're feeling.

 

Jordan (18:18.19)

I do remember when you saw me have that seizure or whatever it was. Like afterwards, you were like, you seemed so calm. And I was like, in my head, was like black. I had no idea what was happening. I was chilling on sidewalk. I was just like losing it. And it was so funny for you to be like, you looked so calm. And I was like, that is not how it felt in my head at all.

 

out like

 

Chels (18:40.856)

Well, that's what I always find people be like, okay, especially even just like, especially during like a focal aware where I'm still kinda hanging out. But they'll be like, can you just walk to the car or somewhere less embarrassing? Can we not be sitting in the produce aisle? And for them, it makes sense. Cause now I see maybe I'm just sitting there chilling and it looks all calm on the outside and inside my brain is freaking out. But so,

 

I guess I kind of got to see the other side of it and now I kind of have a little bit more empathy but also I'm not going to walk to the car so they can be embarrassed whatever.

 

Me either, but you know, fun experiences. No one I would rather have a seizure around than you.

 

Thank you, I'll get you next time, you know.

 

The next clip that I wanted to talk about was something I said feels really awkward to pick a clip where I'm the one talking. But I was talking about

 

Jordan (19:41.73)

the representation of epilepsy on TV. Really all the representation you get of epilepsy is like on TVs and movies and it's all one specific kind of epilepsy. It doesn't give you the full picture. And for something that affects one in 26 people, you really don't know a lot of people with epilepsy. And I feel like this was very pertinent to the conversation because it was with my mom and the fact that when I was growing up, obviously there was significantly less representation.

 

25 years ago when I first started having seizures, 24 I guess technically, doesn't matter, to now. And something that we had discussed, and I still think this is true to this day, is that if you're not someone that's been diagnosed, the only epilepsy representation you have is what you see in the media. It's like the exorcist or whatever, and you see very specific kinds of seizures. Hey, that is actually based off of someone that had epilepsy apparently, I learned that recently.

 

And so when you first begin to have seizures, it may not be the same kind of seizures you see on TV. And the amount of times I've heard people say like, I never in any world thought I could have had epilepsy because it didn't look like the seizures I've seen, AKA grand mal, tonic, clonic, photosensitive seizures, because that's all you really see on TV. And so I found that to be such an interesting conversation because I think it's so true.

 

that if you don't see that representation, you don't know. And I know so many people that have said to me, and I think it's been said to me by many other guests also, that since there wasn't that representation of what different seizures look like, they didn't seek care sooner because they didn't think that's what was happening to them. And so, and I still think it's the same. know, there's progress being made. Miles Levin is making Under the Lights, but there still is a lot more progress that can be made in media. I heard recently that

 

severance had a really good accurate seizure. I haven't seen it. But I heard that one of their episodes they had like a very accurate seizure. think Abby told me that check

 

Chels (21:45.304)

She did and I wouldn't watched it right after she said that too because I was like pumped. So, you know, there is a demand for people to have accurate seizures in shows. It was weird. But yeah, they I thought it was pretty well done. They didn't call it a seizure, but brain surgery and he fell to the floor. So I think we can kind of take that leap.

 

Yeah, so I just think it's so interesting because I really think it doesn't help with any of the stigma we face, but it's also not helping people get help. Since people don't know what they're looking for and on top of that, I'm sorry, I feel like this episode is just me talking, talking, talking. Oh, it's okay. But I was talking to someone else about this recently and it's when you disclose to someone that you have epilepsy or someone finds out in air quotes.

 

Bye.

 

Jordan (22:35.318)

that you have epilepsy that they are automatically expecting what they've seen on TV, which is not necessarily the case for most people. That's not the majority of people of the seizures that individuals have. And so I find that to be something else that is so harmful that it's being, that it's causing. So I also think that's interesting that it then also makes the general public think that epilepsy only looks one way. So when you say you have epilepsy or a seizure disorder,

 

there's an automatic assumption that can be extremely unhelpful to a lot of people.

 

No, I completely agree and I think it really hurts, you know, when it comes to seizure first aid as well, because I see someone having a seizure, their, because their foes are sensitive, so you have friends that'll be like, I won't put any strobe lights in front of you, you'll be fine. And they have a seizure, they're possessed, they're having a vision, they're just whatever is going on in that show. And as an example, and this is one, I watched it and my jaw was on the floor, Game of Thrones, that the guy has

 

A seizure. He is having a vision. of course, seizure slash vision. A VEASURE if you will. And his sister goes and puts her belt in his mouth. And see that scares me is because it's not only are people not realizing, oh, there's different types of seizures. Oh, you know, it's just something that happens. It's not necessarily magical or whatever.

 

But maybe, know, should we put a belt in their mouth or should we, you know, throw holy water on them or, you know, like it's, it's not, it's the stigma for sure. And how people look at you when you tell them you have epilepsy, but it's also how they react to when you actually have the seizure and you're for something like a tonic, clonic, focal, I know what, like even, but you know what, even small seizures too, like you really are at the mercy of who is around you.

 

Chels (24:37.256)

So having that misinformation out there in movies and TV is just no bueno. Like it's no good. I don't want it. I want like you said, you mentioned Under the Lights, Severance. I can't think of any other ones right now, but I can think of a lot of bad ones.

 

Yeah, exactly. And I think it's something that will change. And I think it's something that needs to change. I think that there definitely has been great progress within film and being more inclusive and portraying things more properly. And I hope that continues to extend into seizure disorders and the epilepsy community. Because I think it's something that's really important, especially for

 

something that one in 26 people have and one in 10 people in their lifetime will have a seizure. So it's something that is pretty common. So maybe we should have better representation.

 

I it's more than 1 in 26 these days. The branding is so on point to 1 in 26, March 26, Purple Day, et cetera, that they just haven't updated it. I don't know what the new number is, it's going up. don't know if it's going up or it's just being reported on as we know the different types of seizures.

 

The next clip I had, and this kind of ties into it, was an Erica's episode when I asked her about, specifically because she was the first and the only person I've had on the podcast that has kids, I was asking about how it felt to go through her diagnosis and go through all these emotions of she ended up having brain surgery and how that felt while having children.

 

Jordan (26:15.374)

I found her answer to be an answer I get from a lot of people regardless and that was that she found it really isolating and I Feel that I feel like everyone just feels that way when they become Diagnosed and I think that's why like what we do at young adults with epilepsy is so important like our discord and our support groups and just providing like the lack of Isolation the lack of providing community. How about that? Not lack of isolation providing community for people

 

But I agreed with her so much when she was like, being diagnosed does immediately feel so isolating because it's this brand new thing and you're not sure of the resources around you yet. Cause obviously why would you be in an epilepsy discord if you didn't have epilepsy? And so I completely understand that it feels extremely isolating at first and something that she touched on in her episode that I found to be so

 

interesting and important and I wish like people in general talked about more was the fact that she was like I'm from a very rural area and I didn't have access to the best care and I had to go far for my care and that was extra isolating and I feel like that's something that we haven't talked about a ton on the podcast or in general at Young Adult with Epilepsy that I think is super important and I know recently there's been a lot of stuff going around

 

in certain states with doctors moving away from states or, for example, my partner's from Oklahoma and I was speaking to someone there and they don't have a ton of specialists there and there's a significant amount of people that drive the like five hours to Texas to get the help that they need for their specific diagnosis. And so I think that's also something that is not talked about a lot that is really important is what do you do when you also don't have the resources? And I know that's something that

 

we're trying to incorporate a young adult to the epilepsy. But yeah, that was a big long tangent about isolation.

 

Chels (28:18.606)

The one thing I would say is speak up because there was a lot of times I didn't speak up. didn't, I kept it all inside where if that medication that I was on, it made me feel very depressed. I felt isolated at times. You know, it looked like I was okay, but deep down, um, I remember talking to a friend of mine and I said, this medicine's just, I don't feel nor I don't feel right. I don't feel like myself. I'm crawling out of my skin.

 

keeping that inside. wasn't until I found the specialist, the epileptologist that I started going to. And when he looked at my medication, he was like, well, no wonder why you're walking around like a drunken sailor. I'm like, this isn't normal. And he goes, no. And I'm like, geez, telling someone speak up, don't hold it inside. You know, don't give up. I want you to keep, you know, I don't want you to stop giving up, but I also want you to speak up. I want you to be that

 

it for yourself.

 

do think that something that I've realized recently, and obviously it's better than nothing, but there is still, even if you have an online community like ours, there still is that isolation in your regular life, air quotes on that one, because like I could walk around Boston for a day and I'm not gonna have that support if I don't feel well out in public.

 

It's still a very isolating thing for me to not be able to drive, to not be able to do these things. I have that community online, but there still are moments in my day-to-day life where I do feel isolated from other people because of it. And so I think that's also, like there is still that isolation, even if you do have that community. And so I think it's just how pervasive that isolation is with a diagnosis such as epilepsy.

 

Chels (30:07.51)

recently had to move to a rural area because I can't afford to live in Vancouver. That's really really expensive. The trade-off is I don't have those resources. A lot of people think, you know you can just bus somewhere. You can, well not always, and sometimes you you drive somewhere it's 20 minutes and sometimes you bus somewhere and it takes three hours.

 

Next clip I wanted to talk about was Jessie's clip when she talks about how her mom always says cheers to epilepsy.

 

much of a nuisance epilepsy is it did somewhat save my life you know I mean like it's like my mum my mum blesses she's always like we'll be like out having drinks she goes cheers to epilepsy with a glass and I'm like okay mum

 

really just picked this because I think it's very funny, like the humor that exists within our community. I sometimes I'm like, cheers to epilepsy because I think that there are some things that epilepsy can be good for is how I'll say it. And I know that sounds crazy to say, but for example, for her, helped her find cancer and for other people, it helps them find other diagnoses. And I feel like specifically,

 

something we talk a lot about at Yahweh. And I guess where I'm going with this is that there are a lot of, is comorbidity the right term? Because it always sounds like someone's dead to me.

 

Chels (31:34.83)

I know what you mean, but yeah, I think that's the right word.

 

Yeah, there's many other things that go hand in hand with having epilepsy for the majority of people. specific like anxiety, depression, ADHD, autism are the most common ones. But there's so many other things that people go through that can be caused by epilepsy just happen as a result of their epilepsy. And so I do think sometimes it's like

 

Cheers for epilepsy because it gives an explanation for those other things and it gives you almost a reason to go find support for those other things. I feel like for lot of people, and maybe this is just me, it's easier for me to say to go get help for anxiety because, I have anxiety. I can put a concrete thing that I think it's from to it. Like I could go to my neurologist and say, I have anxiety about my epilepsy. And I guarantee you I would get a much better response based on that.

 

instead of just going to like a primary care doctor and saying, I have anxiety. Like I think that being able to tie it back to something can help you get better care for it. And I think that it allows better conversations to begin in general.

 

Yeah, no, I totally agree about that. And that's that is why I pulled that clip because it's kind of like, you know, at first, like, oh, my, oh, my goodness, like, what do you mean? Cheers to epilepsy. But there are as like that was able to help find her tumor and get her diagnosis. And it can have weird silver linings. And like you said, getting

 

Chels (33:08.138)

diagnosis for anxiety, I know for me, thanks to a lovely seizure where I fell and smacked my head on a granite countertop, I have chronic neck pain and now when it's really bad for days on end, I go into the emergency room and I say, hey, I have this neck pain, but that's not the issue. issue is I can't sleep for the last three days and I can't take my medication because I'm nauseous from it and throwing up.

 

And then I get that care that I need where they're like, okay, this isn't somebody just looking for pain meds. They're actually have another reason because they're like, well, you know, we could treat you now or we could treat you in 12 hours when you have a seizure and it's really bad. But it's also kind of sad though that somebody's not taking seriously for anxiety or pain or not as seriously without the epilepsy diagnosis, which is also kind of messed up. But I guess

 

We'll take a win where we can, right? A win is a win. Have you ever used it as like a different silver lining, which is maybe something we shouldn't do, but I have to like to get out of anything or...

 

I have. mean, like, if people, for example, offer me weed or something and I don't want to smoke weed and that's just because I don't want to. It has nothing to do with my epilepsy, but it is really easy in times like that to be like, no, epilepsy, you know, and like that can get me out of social situations that could be awkward. So I have done that before. I do use it as an excuse to say no to things, I guess, because it's easier.

 

than a longer explanation sometimes.

 

Chels (34:51.668)

Basically with weed I had the opposite experience where people wouldn't not I don't know if it's opposite My brain is just freaking out now, but not in the seizure way. See this is why again, you don't let me on here but I used to tell people and I was diagnosed when Here in BC you could get medical marijuana, but it wasn't for recreational use yet and I would tell somebody yeah, I have seizures. I have epilepsy and they'd be like

 

can you do you have your medical marijuana card and can you get me some like no, man No, I can't but and then I have a lot of people too. They're like, well Have you heard of this baby and it cured? Their epilepsy over in toronto and i'm like, okay, they had a different type And they're a baby and I have medications that have been proven for to work for like 40 years so

 

the

 

Jordan (35:44.408)

People around me don't ask me too many questions about things. But yeah, I mean, I don't use it as an excuse often, but in some, especially if it's people I don't know, like, which is funny because in so many times it's like...

 

you

 

Jordan (35:58.488)

People are so afraid to disclose epilepsy and that's something so anxiety inducing. And maybe since I've just done it so many times in my life, it's less anxiety inducing for me. But you know, a lot of times I will just hit a stranger with like, or someone I've just met within like the hour, like with the, got epilepsy, not doing that kind of thing. And then I don't have to explain myself anymore. And maybe that's weird of me because I know so many people always feel so anxious about disclosing, but I love to hit people with the, got epilepsy, can't do that.

 

You get the huh? So like strobe lights? No, man. Not are you are you photosensitive? I'm not I don't know I've asked you that before. Yeah, me neither. So it's not I think only one person maybe at our company. Two people I don't know to have disclosed that they are photosensitive. Who knows? It could be all of them other than you and me. Yeah.

 

And it's like they'll say that and it's like I'm at a party with you right now with strobe lights, so obviously like The critical thinking skills aren't there sometimes

 

you

 

Chels (36:59.59)

No, but you know what? In my defense, before I was diagnosed, I didn't know anything about it either. I probably would have thought the same thing. I had met one person in high school who had epilepsy and they basically had somebody come in and say, hey, if they have a seizure, move the desks away. And so that's kind of all I knew.

 

Just because I want to go back to her saying how like cheers to epilepsy how it has silver lining For me personally it had a big I don't like the cheer I had a cheers to epilepsy moment because I was diagnosed with syncope for 12 years and they're like hey have some more water have some more salt bring that blood pressure up, know have pseudephedrine which was just like why no opposite? These are all awful solutions

 

I actually had a doctor tell me, like, yeah, just have like a little bag of Lay's potato chips every day. And I'm like, that can't be the advice a doctor's giving out. It doesn't sound, it just, that doesn't sound right. But anyways, so once I was diagnosed, I was over the moon for, I don't know, two or three months before that medication side effect kicked in and then was less over the moon.

 

guess my mom probably feels the same way because I, my onset of my epilepsy was eight months old, but I wasn't officially diagnosed with epilepsy until I was 12 years old because back when I was a kid, there was no, back when I was a kid, they didn't have like as advanced technology, like really more advanced MRIs came out when I was 12. And that's really when they actually were able to figure out that I had epilepsy. I was previously diagnosed with cerebral palsy.

 

which, you know, I wonder, I do wonder a lot. and this is maybe a side tangent about, cause I have Todd's paralysis. I actually met the first other person I've ever met with Todd's paralysis through this podcast. So that's our tie back to the podcast. was Kenzie on our golf episode. And I do, I actually wonder how many people there are with Todd's paralysis that have been diagnosed with cerebral palsy. I really wonder if that's like a big pipeline. since it.

 

Jordan (39:14.894)

is a rarer form of epilepsy and on top of that it mimics so many of the symptoms and it was something I had it I had like it's still on my chart as a diagnosis I think I finally got my neurologist to take it off because like it makes no sense at this point um but I do wonder how many people have a wrong diagnosis still just from the lack of testing that was available

 

and the lack of resources for people like me. And luckily now I have a great diagnosis, it's crazy to think if they had just... Great. It's funny to think though, if they had just left me with a cerebral palsy diagnosis and I wouldn't have never had controlled seizures, and I'm sure that my life would have been a lot worse.

 

Yeah, it's so common for people. see it on like the Reddit and just hear from people all the time that they were diagnosed with this or that and they thought at one point, which they did for me, they're like, could it be epilepsy? And they did one EEG and they did an EKG to make sure that it wasn't a heart problem. And then they sent me on my way. then as you, you now know, it's I know now as well, an EEG if you're

 

not having a seizure or have recently had a seizure isn't great at detecting them. So it's kind of like it can confirm but it can't really say you don't have it. just having a primary care doctor not know that caused me a little bit of grief and I think I've heard it's a very common story.

 

Well, will tie it. I think this ties really nicely into the Jesse clip that you picked about advocating for yourself and how important it is to be the person that calls the doctor every single day to advocate for yourself.

 

Chels (41:04.418)

main message is to trust your body like you know your body more than anything and if you're not happy with what your GP is telling you be annoying ring them every day it's important we need to be taken seriously and we're not being taken seriously at the minute and it's very frustrating when you know something's wrong but no one's doing anything to help

 

I genuinely believe I mean this is a statistic I'm pulling out of for lack of we can censor that I'll say pulling out we can censor that on the podcast

 

I feel like censoring it will make it sound like it's worse than it is, you know?

 

that's funnier. But anyways, just a stick I'm pulling out of somewhere is I genuinely believe like 50 % of the people that I've talked to on this podcast have been misdiagnosed with something like anxiety or low blood pressure or things like that before they got their diagnosis. And so I think Jessi's clip about advocating for yourself is really important. And I really hope that someone saw that and felt like they

 

were going to better and hopefully did better advocate for themselves because it's something so important to talk about. And I feel very lucky that for the majority of my life, I've had someone else to advocate for me because I was a child when I first had onset of seizures and was diagnosed with epilepsy. But I do think it is so important to be the person that is a bother. And yeah, so I thought that conversation tied nicely into that clip.

 

Chels (42:43.522)

Did you know that it actually did get somebody to advocate for themselves? Nice comment on TikTok. Yeah, I saw that and I was like, ooh, look, we did a little good in the world. Just a little tiny smidge. But yeah, somebody, I don't remember exactly what they did, but they're like, yes, I'm calling my doctor tomorrow and getting, cause this is ridiculous. I need more answers. And so it's like, yeah, call your doctor. My mom always says like the squeaky wheel gets the grease or whatever.

 

But I think, yeah, I love it. I hate it, because I mean, she'll call me and be like, did you call your epileptologist today? Did you call him today? Will you call him tomorrow? Will you call him the day after that? And I'm like, I don't want to be this annoying. But yeah, sometimes you have to. When I was first, when my GP was filing, like, oh, you know what? This sounds like epilepsy. Let's send you to a neurologist. They filed me as a different person.

 

like a really low priority condition and whereas so I called them multiple times because they're like yeah your appointments in six months or whatever and I'm like well I need some help now and and I don't know if that's how the American healthcare system works that's how it is in Canada they just you know if it's really serious you're at the top and if it's less serious you'll kind of go at the bottom and epilepsy is like the third top one for seeing a neurologist

 

So they'll get you in there really quickly. And so I should have gotten in within two or three weeks. And I, after like four months, I called them every day and I'm like, man, please help me, help me, help me. I'm having, I'm waking up on the floor like multiple times a week and I can't leave my house without all of a sudden being like, whoa, something's going on. And because of that, they're like, yeah, you probably would have been on the list for a couple more months waiting because we thought you had something else.

 

and it was filed incorrectly, but because I called, I was able to get in. So I guess my mom's right sometimes. Don't tell her that.

 

Jordan (44:48.588)

could talk about this for days but let's move on to our next clip because we've talking for a while.

 

Because our editor will get mad if we go over 30 minutes.

 

Our editor will get mad, but guess what? I'm in charge and this podcast is gonna be longer. No, it's so hard anytime I have someone on that I know really well. like Jenna and Abby I know really well now, but I didn't know them really well when I had them on. But anyone I have on that I know really well. It's so hard for me to not like giggle through it all and like make jokes and get off topic because we like just talk in general. But the next clip I wanted to talk about was from

 

Jenna's episode and it is a clip that I know we've used on the internet a lot because it's a very it's a very good clip that explains a lot of things but it's the fact that she when talking about her journey with epilepsy and starting peer support at Yahweh that she felt like peer support is a place where you don't need an explanation and I really like that clip because I think it's obviously very true and I experience it every day.

 

with the work I do here, with I don't need to explain myself to anyone because people truly just get it.

 

Chels (46:01.846)

on those calls and realizing, there are people who do know what I mean. That when I explain this, I don't have to go, well, it's kind of like this. I don't know if you get it. Everyone's like, I'm right there. I had that experience today. And it really helps me feel like I'm not alone in this. And I've loved that.

 

We got you, as we say. But I found that clip so impactful because I think it really gets to the core of what we as an organization do. But it also got to the core of what this podcast that has now been around for a year, my entire intention when creating it was that I remember when I, the first time I went to peer support group,

 

at y'all way this is before I started even working at y'all way was I like didn't want to I almost chickened out like I was like I don't want to go I like I was so scared of going and I was thinking about it and there is a lot of people there without their cameras on not talking which is totally valid I understand but I was like thinking about it I'm like what if there was a way for people to passively get the experience of being understood without feeling any sort of pressure to actually like be somewhere

 

And that's what created the podcast for me. That's what kind of made me go, maybe we should have a podcast because it creates a community without you having to be present at all times in that community. It's very passive and I like that. But so anyways, I feel like it reminding me of the community building that we have done here and the community building we hope to do. Then yeah.

 

Yeah, I really from the feedback we get on socials and stuff when we do post the podcast and clips from it, that is kind of exactly what we're doing. And I feel really proud of the work the podcast has done. Even, you know, even if it was just one person that commented and said, you know, I feel understood. I'd be happy with that. But we, I'm like, I'm not trying to brag, but we do get a lot of comments, like exactly what you're saying.

 

Chels (48:16.854)

And I think it's really nice too at a Yahweh there's different avenues. Like if you want to talk or you want to get that live experience, you go to peer support. If you want to passively listen, we've got the podcast. If you kind of want to participate, but you don't want that pressure, we have the discord and you can talk to people. You just want highlights, go to our socials. So we offer all those different avenues and

 

I was, for me, think we were our first work, were you peer supported or workshop? I think I went to the workshop.

 

went to the workshop first, yeah. I think we went to the same workshop for first time together.

 

You look like this Canadian pop star and I was staring at you the whole time being like, is that? Is that? And it turns out it's not. And so I wouldn't have gone. I went because I worked at another company at that point who's actually making technology for people with epilepsy. And I was talking to a bunch of different foundations supporting people with epilepsy to see,

 

Who could we work with? We were trying to get testers, things like that. And you know, that's when I came across Bonnie and Wendy and they were like, my goodness, you have to come to our workshop. It's going to be so much fun. So I was paid to go. So I don't know if I would have shown up otherwise because I was nervous and like, I don't want to talk about stuff like that. I've survived on my own for so long, but I am so glad because A, I made money and B, I've

 

Chels (49:54.676)

gotten to come over here and like meet you guys and it just makes me feel so much better like even when we had our walk last year I remember talking to somebody else on the team who I don't remember but I was like hey does anybody get like I won't say the drug like just beep it out I don't know shakes and they're like yeah me too and like how do you deal with it so it's

 

Yeah, like as Jenna said, doesn't require an explanation if you say, hey, I'm tired. We're all like, cool, man. Go take a nap. Like, we got you.

 

I'm going to be a nerd for a second and I haven't done this in the YOWA space. Maybe this will get clipped and be like annoying. But, so for me, and this is the easiest way for me to explain it, and this is where I was when I came to YOWA was I was finishing my master's degree in philosophy and I had just written my qualifying paper, which is like our version of a master's thesis that you have to pass to graduate. and I had written it on standpoint, epistemology, pragmatism and feminism.

 

I'm excited.

 

Jordan (51:00.784)

Yeah, and that to be said that this paper and you'll get the comparison here was on standpoint epistemology and hermeneutic circles. So basically the easiest way to explain that is everyone has their own standpoint, right? They come from a different place. So if we're talking about

 

to be set.

 

Jordan (51:20.194)

people with epilepsy, we would want to hear the standpoint of people with epilepsy when we're writing legislation, when we're creating senior first aid plans, et cetera. You want to hear from the people that have that direct experience. So this comes twofold into hermeneutic circles. So specifically, my paper was on to the first thing being deliberative uptake. And so like when we are in a community and we're trying to make a decision about someone

 

So.

 

Jordan (51:48.662)

or some thing such as epilepsy, we want to prioritize the voices of those with epilepsy. Cool. I feel like most people would agree on that. Not how it works all the time. But the other thing that I was writing on was hermeneutic circles, specifically the idea that we don't necessarily always have words for how we feel. And so we can put a group of people with epilepsy in a room.

 

And we can, someone like me can say, I've had this experience with blank medication. We can say, I've had shakes with this medication. Then you can go, I've had the same exact thing. Jenna can go, I've had the same exact thing. This is a hypothetical scenario. I don't know if this is true, but then we as a group can come to the creation of a word that describes our experience. And so.

 

Something like what we're doing at Yahweh is really the way that we get to progress within our ability to express ourselves as individuals that have epilepsy specifically in this case. That being said, that's what drew me so much to it is because we're actually creating this in a philosophical way. We're creating a space where we now can further explain our feelings and give other people the ability to have the words to describe theirs.

 

And so I thought that's my, wow, my five minutes of being a philosophy nerd and why I was so impressed by Yahweh when I first found it in the mind space I was in. Anyways, all that to say that that's why peer support doesn't require an explanation is because we're creating a little circle where we all share our experiences and we understand those experiences and therefore can create better descriptions and words for our experiences.

 

So.

 

Chels (53:38.944)

Yeah, okay, I completely agree and with everything you said including the big words and but there's definitely ways that I couldn't describe my epilepsy before. For example, there is a part of my auras happen are instead like a lot of people have temporal lobe where it's their emotions. For me, there's actually like sensed like physical sensory issues. And so someone described it as thin. And I was like, that's

 

such a great way of saying it and I never would have thought to say it that way and then I went to my doctor and I said yeah you know my hand feels thin and they're like yeah I get that I've heard that before whereas before I was could not describe it in the least bit and I sounded crazy yeah it's just such a good way to of just processing what you're going through finding better language and then also just being like hey maybe

 

this thing that they're going through is something that I'm also experiencing, I should look into that.

 

All comes down to community, that's what I have to say about that. The last clip I have is from Mackenzie's episode. 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, like hey, there's still love that exists even when this is a really hard thing that's happening. It was on, she's writing a book, and it was about on

 

you

 

Jordan (55:08.436)

the reason she's writing the book is because she feels like she's never seen representation of people with epilepsy being loved necessarily in media. And I had written in my little notes for this episode, because I think that clip is genuinely the embodiment of why I wanted Mackenzie to be on the podcast. Because I think that

 

It is something so many people experience and I know that it's come up a lot in our content and through the feedback we get from individuals. And I feel like she somehow captured something that I had felt for years just in one sentence by explaining how she had felt like a burden to love. And I just found it so powerful because I think that especially as a young adult, and maybe I'm universalizing, but I do feel like as a young adult with epilepsy, might be something.

 

that every single young adult with epilepsy has to go through is now navigating something like being loved or like a relationship with epilepsy because it does change things a lot. I'm at the point now, almost a year later filming this episode from then, I think my perception has definitely changed a lot towards feeling like a burden to love. I don't feel that way anymore. I definitely felt that way maybe two, three years ago. But yeah, I think it embodied

 

one of the things that I feel like isn't talked about a lot, but we still get that feedback from people talking about it. And I think it's something important to talk about. And it is a big change and it's hard. And I say this, I think every single podcast episode that it's hard to be a young adult in general. And I feel like young adults in general probably struggle with being loved in relationships. And then you add another layer to it and it makes it even harder. So.

 

When she said that, you know, being a burden to love, it's one of those things that just like, just like Abby's feelings of small, like it gets you right there. Cause I think everyone can, whether it's romantic or not, like even with family and friends, but as young adults, that is kind of when you start to go out and find romantic relationships. And it is difficult because Jen actually said in her episode about how, you know, she meets someone.

 

Chels (57:25.97)

and she would like a ride to go to the date because she can't drive. And it's kind of an awkward thing to ask, you know, first thing, oh, I met you, hey, you wanna go grab coffee? Yeah, so can you grab me first? And then there's also somebody you don't know well and you're like, yeah, come to my house, let me get into a car with a stranger. Just like mom always told me to do. But...

 

It's yet something so difficult to navigate. Something that does warm my heart is every once in a while I see someone online and I've seen the opposite too. It just makes me super angry. I do think it's valid when there's some partners that find maybe it becomes too much for them. Like if that's how they feel, then that's how you feel. But it hurts to see people say that. And I'm talking about like forums online. But what does warm my heart is you have somebody go on there and be like, hey,

 

Started dating this girl. She just told me that she has epilepsy What do I need to know and first of all everyone's like ask her because it's all different But then people are also being like hey take this seizure first aid course Hey, you know read up maybe find out when she needs her medication if she has rescue medication so Yeah, you can feel and even then probably still feel like a burden because you're like hey here's this extra help that I need that

 

I'm not sort of reciprocating to you, but there are good people out there. And I hope her book kind of helps people realize that or makes them feel a little bit better at the end of the day.

 

yeah i think that once you find the right person then you won't feel like a burden to love that is my opinion on the topic of love

 

Chels (59:11.662)

I'm a, you know how I just found out somebody was not the one? I had a seizure and I had been making cookies and I had a seizure in front of the oven and when I woke up, he was, was he taking care of me? No, he was taking the cookies out to make sure they didn't burn. I'm like, excuse me, sir. Medical, and I hope he hears this, medical emergency.

 

your cookies being slightly like a little crispier than you'd like. So.

 

fam.

 

Yeah, I don't know if I'm gonna leave that in, but that's a surefire way to know. Not the person for you.

 

can't, I can't, I'm gobstruck as they might say. Is that a word? I'm gonna go with that's a word. Gobsmacked, that's the word I'm for. I'm gobsmacked. Did you have any more clips you wanted to talk about?

 

Chels (01:00:13.816)

think so. I kind of went through it. I'm like, she's already kind of pulled them. There is something about the podcast, though, that you kind of hit earlier. With your philosophy words that I don't remember, you'll have to remind me. Sorry. So what was your thesis on? Not thesis paper? Yes. Okay, so back to hermaphrodite circles.

 

magnetic circles.

 

Chels (01:00:41.902)

and you're finding like that language and everything. The nice thing about this podcast is you host it. You have epilepsy and so you can really engage in the guests more than I don't want to say other podcasts but other a lot of other media including movies, TVs, some there's thousands of epilepsy foundations or not foundations not specific okay let's do it again there are thousands of epilepsy non-profits

 

out there and like I said my job before I got to meet with like 50 of them and I was actually surprised how many of them weren't actually run by somebody with epilepsy or close ties to it so I think that's something I'm really like proud of with the podcast is I'm not proud that you have epilepsy I'm grateful though that because you do you are able to share your experience

 

You know what? I've added these episodes and I'm always like, man, like why are there so many pauses between what they're saying? And I now understand why. You it. But yeah, you keep being you, you keep having that epilepsy experience to share with us. Or it completely cured.

 

Now I get it.

 

Jordan (01:01:58.592)

It's so weird to me because whether we keep this in the episode or not, think that obviously a important that I have epilepsy and that when I am speaking on this podcast, I understand the experiences I'm talking about because I personally can't imagine getting up here up here being on a public forum like this and talking about experiences of people with epilepsy and not having epilepsy myself.

 

But also the podcast has become a way for me to express myself in a way that I didn't think it would be when I started. I heard someone say this in a workshop recently and it was the way that I think I've said on this podcast a couple times, but when we first released the podcast, it was like coming out because and I heard someone say that a workshop about disclosing. There were a lot of people in my life that didn't know I had epilepsy.

 

Yeah, you've thought of it.

 

Jordan (01:02:55.04)

for no reason other than like, I don't know, need to know basis. But then all of a sudden, look, I have this podcast that I'm posting about on my Instagram and to my whatever 1000 something followers. it's now in the top 20 % of video podcasts on Spotify. there's people in 30 different countries consuming this. So I think something an unexpected plus side in this past year of podcasting is I think I've been

 

I've become more comfortable with myself having epilepsy in a way that I didn't think I would. And I hope that people that listen to this podcast have grown with me or already had the growth in them to be comfortable with themselves with epilepsy. But I think that having that relatability and being able to speak about these things has definitely made me understand my epilepsy more and hopefully other people understand the epilepsy more, whether they have it or not. So.

 

I hope so too. That would be a great thing at the end of the day. Everyone's like, I know what this is now and how to help somebody. It's not gonna happen, but can I share this quote just because I'm spent all day, not all day, but I spent a good chunk of the day making this post and I really think it kind of ties back to what you're doing, even though you are not a writer director, but on Miles Levin's Ted Talk, which

 

We highlighted he had the quote and this this is one it also got me you can tell things get me, know They hit me right in the heart. I have a little cry I didn't cry but you know, like it's just one little tear swells out there And I feel like this is something that you're doing But it said that the film was never gonna cure my epilepsy But what it did do was it got me closer to the moment where I woke up and decided the time I lost to seizures was not a waste and I think that's you you've had

 

Epilepsy, you may have feel like you, you the seizures were for nothing and they're just annoying, but in the end you are able to give back to this community and to 30 countries. So, you know, like there is good and silver linings and, you know, cheers to epilepsy that can come from it. So thank you.

 

Jordan (01:05:08.642)

Yeah, if this podcast has zero listeners, I will still be doing this. So.

 

I hope not. I hope not, but if we get two I'll be happy.

 

I know you'll listen to me, so.

 

I always listen to it on every platform.

 

Again, like we don't have to leave this ending part in but it is crazy to me to think that the first episode of the podcast we put up within like the first month that had like 26 views and then like we've had other episodes come out like that within the first month they have like 400 views and it's like like 400 listens all the way through not just views and that's crazy to me to think that like we've just grown so much and it feels like it just started yesterday and I would like to believe that

 

Jordan (01:05:54.186)

those numbers prove that we are helping people and that people need this.

 

Mm-hmm. Woo, go Jordan. Great idea.

 

Go Chels! I couldn't do it if I didn't have you to edit. Can you imagine if I edited this podcast?

 

I feel like we'd have more episodes and they'd go out sooner

 

Okay, well, do you have any parting words for the people listening?

 

Chels (01:06:17.166)

I don't know. Go get your seizure first aid certificate. And don't stick a belt in my mouth. And... It's pretty much it, you know? Most important things, I think that's the takeaway. Don't listen to Game of Thrones and go get your seizure first aid, because it's not hard. It's easy. And one in ten of you will s- Nope, that's not how statistics work.

 

But one out of 10 people will have this feature and you can help them and will you feel great at the end of the day, like warm fuzzy feelings. So do that.

 

Jordan (01:07:00.024)

the end. follow us on Instagram.

 

I'm sorry. You want me to promote the things I'm in charge of? Hey, yeah, how about you go follow us on Instagram, blue sky Pinterest, tik tok, Facebook, LinkedIn, LinkedIn, and join us on discord because we have silly conversations all the time and serious ones, but the silly ones are also

 

I do be out here pinning all our Pinterest things to my boards. Yes!

 

Thank God somebody is.

 

Thank you for sitting down and talking to me. It was very exciting to get you in front of the camera instead of on the backend of all of our podcasts. And thank you for one year of being my editor and supporting me.

 

Chels (01:07:43.086)

Any for many years to come, hopefully. Don't fire me.

 

Thank you for listening to today's episode. As a reminder, Young Adults with Epilepsy is a nonprofit that provides free weekly peer support groups, Monday, Tuesday, Wednesday, free monthly peer support workshops, and other resources to young adults with epilepsy. To view these and other resources, please visit youngadultwithepilepsy.org. Thank you.