The Voyage Through Epilepsy with Tiffany

When Tiffany Kairos was just 16, her life took an unexpected turn with the onset of epilepsy, a journey that taught her how to find humor in the face of adversity. Join us as Tiffany, founder of the Epilepsy Network, shares her transformative tale from confusion to advocacy, infusing each challenge with a dose of laughter. In our heartfelt conversation, we uncover the realities of living with epilepsy, from addressing the stigmas to embracing the power of a united community. Tiffany's inspiring outlook isn't just a personal triumph; it lights the path for others navigating the complexities of this condition, proving that a little humor can go a long way.

This episode is more than just a story; it's a guidebook filled with nuggets of wisdom for anyone touched by chronic illness. We unpack the 'spoonie' toolkit essentials, highlighting the significance of rest and the simple pleasures that uplift the spirit, like indulging in dark chocolate. Tiffany also shares her aspirations for the future, from continuing  advocacy through speaking events to possibly venturing into comedy, always with the aim of contributing positively to the epilepsy community. Tune in for an episode brimming with resources, resilience, and reminders of how we can all make a difference.

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Transcript

Jen: 0:42

Hi, my spoonie sisters, it's your Gracefully Jen, and I am so excited I know I say this every week, but I really am every single week excited and this week I have the pleasure of bringing it to you. An amazing advocate in our little social media world. This is Tiffany Kairos. I know I want to say it wrong, but I'm trying really hard to say it right. Hi, tiffany, how are you today? Hi, thanks for having me on your video, thank you, thank you for taking the time out of your day to join us and to talk about all the things that you do. I'm so excited. I'm so excited to be here. So do you want to kind of give us a little bit of an introduction into who you are and what you do?

Tiffany: 1:27

Yes, yes. So I'm on my fifth year of living with the Epolypse Advocate. I really love what I do. I am an Epolypse Advocate. I wear many hats. I'm an Epolypse Advocate, blogger, content creator and I have my own online organization, the Epilepsy Network.

Jen: 1:51

That's amazing and, of course, how I know Tiffany is from watching all of your fun content on Instagram and you know I might not have epilepsy but I still love and enjoy everything that you do and what you bring to those around you, and you're kind of funny. I love it, thank you, thank you. So let's kind of backtrack a little bit and tell listeners how this kind of all started out for you. When did you notice that you were having some concerns?

Tiffany: 2:23

Well, funny that I was going to sleep when I was a teenager and I was more nervous about taking a history test. So gone to bed. Next thing I know I wake up and I'm being taken downstairs on a gurney, had two paramedics on either side of me asking me if I had taken drugs. And I'm so dazed and confused my head is just all swirling and I'm thinking why would they ask me if I took drugs? And I said no, what's going on here? And they load me up and you know, in the ambulance ran a bunch of tests and said you had a seizure. And I'm thinking, what in the heck is the seizure? So they put me on medication.

Jen: 3:17

Yeah, Wow, wow, okay. So how old were you at the time? 16. Oh, that's terrifying, yeah.

Tiffany: 3:27

Yeah, I'm a little cab in the middle of the mud.

Jen: 3:29

Yeah, I'm a teenager. Wow, okay, so what happened from there?

Tiffany: 3:35

Well, I was on a treatment for about six months. I didn't have a seizure at any point at that time. So they took me off and I just finished out my teenage years as soon as I turned 21,. I had gotten married. I was driving my car to go buy Christmas presents for my then husband and my family. So midway to the store, as I'm driving along, my muscles go limp like spaghetti noodles and my vision just starts to sink black. And I have just a millisecond to slide my foot over to the brake. And I had a little bit of strength in me to tap the brake but it didn't press down and I passed out.

Tiffany: 4:31

I drove through two front yards, over a curb and smashed into a tree and when I woke up on the gurney I was again. I had two paramedics, you know, next to me again and I had this flashback of when I was 16, like is this, what's going on again, from when I was 16? They ran a bunch of tests. I had a seizure and they said well, since this is your second seizure, now you have epilepsy. And I'm thinking now what the heck is epilepsy?

Jen: 5:12

Exactly. If you haven't experienced that, you know you might have heard about it happening to other people, but unless you experience it it's kind of like well, what the heck are you talking about? Yeah, it was a toy marriage, absolutely okay. So what did you do from there?

Tiffany: 5:30

I didn't know what to do from there. You know, the doctor at the time gave me an itty bitty pamphlet of you know what it was and what I could do, and so I was just looking at it like, well, this is decent, but you know, I don't know what to do from here. So what does one do? They hop on to Dr Google and they start doing their homework. They're doing their research and I'm finding out a ton of information, some that kind of freaks me out, some that really helps. But it took a while before I found my way to Facebook and I discovered social media and online community groups, which was a godsend, because I met a bunch of other patients and caregivers who just took me underneath their wing and helped me to better understand the condition and provided me resources, which was really inspirational to me.

Jen: 6:34

That is amazing. Yeah, I mean that's amazing that you found that. And now look at you. You're this amazing beacon of light and encouragement, humor and support to people around you. It's fun to watch how we get from point A to point B.

Tiffany: 6:54

It took some time. It really did. It was like it was like it was mad, mad, mad, terrified. That took some time. It took some time to do buddy walkers. Family and you know I really do humor as a coping mechanism, just because I need that laughter and that just you know it uplifts me and it keeps me, you know, level-headed and I want to provide that to others and hopefully that brightens their day, and you know.

Jen: 7:30

And you absolutely do that. You do that every single day, and that's one of the reasons why I reached out to you, because you're so much fun and you bring such joy to people around you.

Tiffany: 7:42

Oh, that makes me so happy.

Jen: 7:43

I'm, so happy I'm so grateful. Come out to a wedding? No, not at all, you're in good company. Okay, so you know, I know a little bit about epilepsy and I've known people. You know a good dear friend of mine, her daughter lived with it for years. No, and so you know, obviously I know a little bit. But, yeah, is this something that you feel like you have well controlled or are you still having seizures periodically?

Tiffany: 8:15

Well, every day, every day, every person is in a different form. I have a type of epilepsy called refractory, which is also known as intractable or drug resistant. Mine is very difficult to manage. I've been on multiple different types of medications over the course of 15 years and it's been really hard to nail down. I occasionally, once in a blue moon, will have a tonic-clonic seizure where you black out and, you know, your muscles stiffen and shake. But, you know, sometimes, on a, you know, daily basis, I will have the smaller seizures where my vision will blur and my head will, you know, turn to the right and I can't speak for, like, maybe you know, five to ten seconds and then I'll return back to normal. It's just like a glimpse.

Jen: 9:13

Okay, okay so. So when you're experiencing, you know either kind of those do you feel like there's a recovery time after that?

Tiffany: 9:23

Yeah, this is a tonic-clonic seizure. It's a really big one. Sometimes it could take me an entire day, other times it could take me like half an hour to an hour of just needing to rest on the couch and do nothing and let my brain just kind of restore itself. And with the smaller ones it could just take maybe 10-15 minutes and I'm back in action.

Jen: 9:54

Okay, okay. So let's see here. I had a really important question for you.

Tiffany: 10:00

Oh, here it is.

Jen: 10:00

Okay, what are some of the challenges you face living with epilepsy, and are there specific triumphs or moments of strength that you'd like to share?

Tiffany: 10:10

Well, a lot of well, a couple of them. I have to keep myself motivated and encouraged, because it's so easy to want to get down on yourself when you're faced with different types of challenges and things of that sort. Plus, you have to learn how to navigate life differently. Once you've become diagnosed with an illness, you have to learn things that you once did before. So absolutely something that you really have to learn from, but it's not bad at all. When you look at support, it's important around you.

Jen: 11:01

I think that's important. I think without the support of others, it's really lonely, it's scary and it's lonely.

Tiffany: 11:11

Yeah, it can be. One of the reasons why that's so important is that we know for God, and especially the chronic illness community, the epilepsy and chronic illness community because we are one body that keeps each other up 100%.

Jen: 11:26

I see so many people in our community that we have different illnesses. We have different struggles, but we lean on each other and we support each other anyway.

Tiffany: 11:36

Yes, we do.

Jen: 11:37

I think that's such a beautiful thing that I can reach out to you or many other of the people in our community and I can say, hey, I'm really struggling right now and even though you might not get it, you're going to say some amazing words of encouragement and give me some humor too.

Tiffany: 11:56

Right, of course I'm not going to be willing to know more about your recommended plan. I need to be ready for you.

Jen: 12:08

Yes, absolutely so. My next question for you is so epilepsy can sometimes be stigmatized, so how have you dealt with and overcome any stigma associated with your condition?

Tiffany: 12:22

Well, I look at it as an opportunity. I used to feel, really, what's the word? Insulted or offended by, you know, stigmas, and that would make me feel really bad. But over time I, you know, changed my thought process and it had me consider well, maybe this is an opportunity where I can crush stigmas by feeding them educational, you know, information and by that they would no longer feel the need to want to you know, stigmatize someone or insult somebody.

Jen: 13:03

That's good. That's good. You have some really good insight. I love your answers, so okay. So what is your treatment plan look like? Is there anything that you feel like helps you?

Tiffany: 13:21

Well, right now, I'm on, I'm on, I'm on, I'm on. Again, that's, just again, that's just I have refractory epilepsy, which means it's difficult to control with medication. So it takes a lot to try and stop or even lessen the seizures and I'm thankful for even the reduction of the seizures. I'll take that.

Jen: 13:47

Absolutely Okay, so are you able to drive?

Tiffany: 13:51

I have a valid driver choice. I have a valid driver choice. I'm just not surprised because I don't want to put anyone or myself at risk of danger, because of course when I was diagnosed I was behind the wheel, so I don't want to reoccurrence of that.

Jen: 14:09

Absolutely, and I can only imagine how terrifying that would be.

Tiffany: 14:13

Yeah, you know I experienced it once.

Jen: 14:16

Why would you want to experience that a second time?

Tiffany: 14:19

Mm-hmm Are there? Any places that you'd like to go.

Jen: 14:26

Thank goodness Are there places or things that you try to avoid, you know.

Tiffany: 14:33

I like to go and play musical artists, I love going to concerts, but I have to really check to make sure that the lighting isn't going to be too dangerous, and if I, you know, see that it's just too much for me, I have to leave or I have to, you know, check if movies at the movie theater have a lot of flashing, flickering lights. I can't do that in the movie theaters, so usually I wait until they come out, you know, to watch them at home in the safety of my home. And you know I have to make sure that I go to the events where they help her whole whole thing. They help her walk on the water.

Jen: 15:27

Definitely, definitely. How does that affect your social media? Do you have to be careful about who you follow and what they're posting? If it's going to bother you, if it's going to bother you.

Tiffany: 15:40

I've written a situation where, unfortunately, there have been some rude people who pop up and will send me flashing, flickering memes or gifts just for a laugh, and that has been so. Yeah, and it's not just me. There have been other people with epilepsy too, and that's been really unfortunate and very rude. So I always have to again look in my settings to make sure that I hit the checkbox for any flashing or flickering videos. Don't allow those in my feed.

Jen: 16:20

Honestly, I didn't know that was an option, so that's really good.

Tiffany: 16:23

They're getting better, they're getting better, they're getting better, they're getting better.

Jen: 16:28

So I guess, what kind of advice would you give to someone like me that really hasn't known a whole lot about it? How can we best support you? What can we do to protect you?

Tiffany: 17:31

Talk to us. Talk to us, do your homework, don't be afraid to do some Googling and read our blogs. I share on my stories a lot of the things that I write and my content, of course, and it's available to take a look at, and I share advice and tips. All of those things are provided and readily available, just so you can learn more about the condition.

Jen: 18:02

Well, I think we also need to be thoughtful. I think even a few years ago, it didn't even occur to me that I might have people following me that have epilepsy. So, posting a story or responding and sending a gift to someone, it might have not even been intentional sending something that could be bothersome, and so I think it's important that we get that out there and remind people that we need to be smart about it, we need to be courteous about it and respectful of you.

Tiffany: 18:34

Well, I appreciate it very much, and so I'm just turning it into the community that we want to be. We're very much interested in that too.

Jen: 18:43

So do you mind telling us a little bit about your advocacy work?

Tiffany: 18:47

Yeah, yeah, in 2011,. It was when I started my online community, the Epilepsy Network, and that was in line with when I started my blogging and I was a little rusty at the time, just getting my feet on the ground, and that was really exciting. I was trying to figure out my pathway, where I wanted to go with it, so along that line I just kept going. I know that I wanted to provide education to those patient caregivers even the community, anyone that had ears, that wanted to know more, that wanted to feel confident in wanting to tell their story. I wanted to help them get there and do that, because they inspired me when I actually needed them and when I needed somebody, so I wanted to give back.

Jen: 19:44

I love that. I love that you have the best heart. I just adore you. I can't say it enough.

Tiffany: 19:50

You're so kind, you're so kind.

Jen: 19:54

Well, thank you. Okay, my next question for you is what kind of tips and encouragement would you give to someone that maybe is even at the beginning of a journey like yours?

Tiffany: 20:07

Yeah, we have one. The first thing is that you look at people. Be yourself, be positive about what you're about. I know, I know. I know you really want to internally look inside and find some way to blame yourself. You did nothing wrong. You did nothing wrong to cause your condition. Just reach out, reach out to other people. There are plenty of people ready and waiting to embrace you. So definitely do that, definitely do that. There's a lining the lining in the darkness. The darkness in the stairs is so relining to be found.

Jen: 20:45

Oh, 100%, I absolutely agree with you there. Okay, Now I want to ask you were you familiar with the term spoonie?

Tiffany: 20:57

In the beginning. Do you consider yourself one? Because I sure do I think you do I definitely do. I actually have a friend who is so tiny A golden spoon.

Jen: 21:17

So that's really good, oh, I love it.

Tiffany: 21:19

Yes, I love it, I cherish it, I cherish it very much.

Jen: 21:24

That's amazing. Okay, so, since you are a spoonie and you totally relate to all of this, what would be the most critical, important things or even it doesn't even have to be a thing, but in your spoonie toolkit, what would be most important for you? What would you recommend to people?

Tiffany: 21:46

Oh, that's a good one. I would probably say for certain. I like to say, I like to say a pillow, you know, just because rest is key, I always say rest is best, rest is best. You have to have that. I always got it. I always got it.

Jen: 22:08

Yeah, I'm going to write that down. That's really good. Rest is best. Rest is best. Okay, that's a good one. Do you have maybe two more? That would be important for your spoonie toolkit.

Tiffany: 22:20

Oh my gosh, I don't take that it's a risk. It's a risk people I don't know if you ever read the report. I think we're all at home. They are saying you're so good, absolutely, and then you relax and you deserve it.

Jen: 22:58

You deserve it Definitely, definitely. Okay, what would be your third one?

Tiffany: 23:09

A delicious dessert. Yes, yes, something delicious.

Jen: 23:19

What is your favorite?

Tiffany: 23:21

Oh gosh, I would have to say a dark chocolate candy bar of some kind, anything dark chocolate, anything dark chocolate, anything dark chocolate.

Jen: 23:33

Oh yeah, okay, now I think I need some chocolate after this. Yes, yes, I think I do I think that's what I love about this time of year. You know they've started rolling out all the Valentine's chocolate. I know it's hard for me to say no.

Tiffany: 23:52

Oh my gosh.

Jen: 23:54

I think those aisles are very dangerous for me this time of year. Oh my, gosh. All right. So okay, inspiration. Who or what lifts you up and your spirits on a difficult day?

Tiffany: 24:08

Oh my gosh, how much time do you have, because I love it a lot there he is oh my gosh, I love it, I love people like. I'm winning a bunch of Mario coins, by the way, so I'm going to be, your next one. I love you know Bob Ross. I don't know if you know Bob Ross, but he helps me. I love to create art.

Tiffany: 24:38

You know art is so I don't know if you've seen any of these, but I do create a longer one there. Another one is just the epilepsy community. When I come down to it, it's the epilepsy community is my biggest inspiration, because they lift me up the epilepsy community and the chronic community as a whole. As a matter of fact, I wouldn't be doing what I'm doing without you guys. I really would not. I wouldn't be here without you guys.

Jen: 25:17

I do what.

Tiffany: 25:18

I do for you.

Jen: 25:19

I could chime right in there with you. I absolutely agree. I think, at the end of the day, we do what we do for others, and that's a beautiful thing. It's a beautiful thing.

Tiffany: 25:28

Yeah, yeah.

Jen: 25:30

It's a wonderful thing to be able to give back to the people that have supported us and lifted us up when we most needed it.

Tiffany: 25:36

Yes.

Jen: 25:37

Yes, you're just amazing. So are you. So are you. You're so kind. Thank you, okay. So resources, can you recommend? Is there like three accounts or articles or blogs or websites, anything that you would recommend to someone that you're speaking with about epilepsy?

Tiffany: 25:57

Well, I would definitely check it out. There's one. You can hop on over to my blog, riseaboveepilepsycom. I got plenty of goodies there and, of course, I would probably say Health Central has got some really good content if you want to check them out. For chronic illness and diabetes, you're one of my faves.

Jen: 26:32

I love it. I love it Okay. So I know I've been barred to do it with you with what feels like a million questions.

Tiffany: 26:38

I love it, I love it, I love it, I love it.

Jen: 26:42

I love everything that we've left out and we haven't covered. That's important.

Tiffany: 26:48

I'm not going to do anything. Unless you want to bring along to me, I'm happy to take it.

Jen: 26:55

Oh gosh, I mean I have a million different questions, okay, oh, okay, here's a good one. Future hopes and goals. What are your aspirations for the future, and how do you see epilepsy fitting into your long term goals?

Tiffany: 27:10

Oh well, I know I want to keep doing this until the day I close the book on my life. So I will be doing this, even if a cure is found. I'm not going to stop gabbing, I will be doing it. So I would love to be able to get out there and hop on stage, do some TED talks, do some television programs, maybe, who knows? Maybe even do a comedy routine.

Jen: 27:41

I'm game. I would totally watch. I would be there in a heartbeat.

Tiffany: 27:46

Anybody's out there? What's your name? I'm from under the lights. I'm here, yes.

Jen: 27:54

Reach out to Tiffany, because I'm telling you I love the way your brain works. You just, I don't know, you bring such light and humor and I know as soon as I turn on Instagram I don't know, you're just going to fill me up and I love that. I appreciate that. Well, thank you so much for giving us your time. You know, I think I'm going to definitely have to bring you back. I'm sure I'm going to think of more things to ask you in the future.

Tiffany: 28:23

I'd be happy to. I'd be happy to.

Jen: 28:25

And maybe by then we'll find out that you've been doing some TED talks and a comedy routine or something that would be amazing.

Tiffany: 28:33

I'd love it. I'd love it.

Jen: 28:36

Well, thank you for taking your time out of your day. I appreciate you so much and everyone, I'm telling you go find Tiffany. I will definitely have all the links in the show notes so you can find and follow her and reach out if you want to.

Tiffany: 28:50

But thank you again.

Jen: 28:53

And listeners. Until next time. Don't forget your spoon.