By Amber Kaiser
Late last year, our Neureka team heard about Landis & Lexi’s upcoming “What the EF” Podcast that they would be starting, and we were excited to reach out and talk about ways we could work together. Since then, they’ve already had two successful seasons and we’ve heard lots of great stories!
I really connected with the episodes that I’ve listened to so far, and it’s the first time I’ve heard people publicly sharing their experience with epilepsy from a more realistic standpoint—that it really sucks—but we keep going! Each of us has to learn the best way to live with epilepsy and all the side effects of seizures and medications in terms of our own experiences, challenges, limitations and support systems, whether that’s family, friends, neighbors and other people in our communities. We have our own challenges, and building a community of support—whether that’s one person, a few people, or everyone you know—I personally believe really helps make a difference in your quality of life.
Lexi I was diagnosed at 16 and Landis was 32. The longer we’ve known each other, the more clearly we can see the differences in care and personal experience between our ages when we were diagnosed.
We’ve interviewed so many different people, going through their teenage years, and trying to keep up with everyone else and that usually doesn’t work well if you live with epilepsy. A lot of us also have the same stories of having breakthrough seizures in college. We see that age range often.
Landis Being diagnosed at 32, my whole life turned upside down because I had to figure out a new way to live. Being single and not having a partner, you aren’t really anyone’s responsibility. My friends who are like my family are the ones that really stepped up for me.
Lexi Like a lot of other people, there was no direct conversation about my epilepsy and it kind of morphed over time. It took a long time for me to accept living with epilepsy and for my family as well. In college it got really difficult—I was trying to live like other people I knew and it wasn’t working out so well. In my early to mid-20s I started learning how to accept it and take care of myself. I started prioritizing what I was doing to my body and had to prioritize sleep above everything else.
Landis Lexi is like the Queen of self-care. I have learned so much from her. Once I officially accepted my epilepsy, life became so much easier to understand. It took a while and it wasn’t easy for me to accept it at all. For me, acceptance is fluid—it comes and goes, and I think that's pretty normal about any trial in life.
Lexi Make sure you have a community to back you up.
Landis Immediately get a therapist or counselor with experience in treating patients with epilepsy or other chronic illnesses.
Lexi I kept it top secret when I first got diagnosed with epilepsy in high school. In college, once I met other people with epilepsy, and especially confident epileptics, that’s when things got better for me. Talking to people about their personal stories, being around people who I could share my own story with and hear their stories and relate with each other made a big difference.
Landis It took me a few years to accept having epilepsy. My neuropsychologist was telling me I haven’t accepted this yet. I kept trying to go back to being 32, back to how I was before. I didn’t realize that there was no going back, only forward. Acceptance and community are huge for me.
Lexi It’s slowly evolving. People are talking a lot more about their mental health in general now, but when I was diagnosed it was “hush hush.” I think that doctors are also starting to realize it’s more important to consider your mental health, not just your medication. (Epilepsy medications have so many side effects that people have to learn to live with every day.) I think since I’ve been diagnosed, maybe only one or two AEDs have come out since then.
Landis It seems there hasn’t been a ton of new action in epilepsy and I’ve had it for about six years now. It seems slow. There are so many chronic illnesses, I think we can hopefully get to a point where we can feel a little bit more understood and supported. There is definitely more room to grow there.
We are bringing humor to these conversations because too many people have to stay politically or medically correct and we want genuine conversations about people and how their lives are impacted living with epilepsy. It’s also a way to build community if you can’t find one. There are a lot of places that don’t have an epilepsy community and our podcast helps build community for people who don’t have access and we are accessible year around.
We love all our shows and have lots of “ah ha” moments. One that stands out is “How this bad ass owned her epilepsy with Eli Corbett” (Season 1, episode 8). She had amazing energy and shared her bottom moments with lots of laughter. She’s at the top of her game now so it’s easier for her to share at this time in her life. She had a crappy Valentine’s Day horror story. On that day her divorce papers came through and she had a seizure on a treadmill. It was one of her lowest moments and she talked about what she learned from that. She uses humor as a coping mechanism.