This was a tough episode to do. After years of keeping silent about what it’s like living with epilepsy, I finally feel brave enough to talk about it.
There’s so much to be said and this podcast episode doesn’t even scratch the surface.
But I thought a nice way in would be to talk about how getting diagnosed with epilepsy as an adult changed the trajectory of my creative journey.
As John Lennon sang, “Life is what happens to you while you’re busy making other plans.”
To learn more about epilepsy, check out the Epilepsy Foundation website at: epilepsy.com.
To read a recent article I wrote about my experience with epilepsy, click here.
To become a patron of the Creative Space Podcast, visit: https://bit.ly/3ECD2Kr.
1:58—How epilepsy derailed my original creative path
3:44—Living in the new normal
5:56—Managing medication side effects
8:15—You can’t be selectively vulnerable
Hello everyone and welcome to another episode of creative space, a Podcast where we explore, learn and grow in creativity together. For today's episode, we're taking a departure from the interviews we normally do, so that I can open up about something that has had a huge impact on my creative journey so far. Epilepsy. Oh, and Hi, my name is Jennifer Logue. And apart from being a writer, musician, actor, and host of this podcast, I'm also a person living with epilepsy. First of all, you may be wondering, what the heck is epilepsy? And that's a big question to answer. Entire books have been written on the subject. But according to the Epilepsy Foundation, it's a brain disorder that causes recurring, unprovoked seizures. And what are seizures you may ask? There are sudden surges of abnormal and excessive electrical activity in the brain and can affect how you appear or act. Epilepsy is the fourth most common neurological disorder in the world. And given there are many types of epilepsy, the condition manifests itself in different ways depending on the type of person has, the type I have is generalized epilepsy, meaning the whole head, the whole brain is affected. And the seizures I've had where tonic clonic, which is characterized by loss of consciousness, jerking movements, foaming at the mouth, you get the idea. seizures are scary to watch. And that's probably why we don't talk about epilepsy as openly as we do about other disorders. There is a stigma attached to it. And some people may not agree with me about that. But in my experience with epilepsy, that's what I've come to find. When I first got diagnosed eight years ago, back in 2015, my neurologist at the time told me not to tell anyone, she said I'd be discriminated against, it will be harder for me to get a job because employers would see me as a liability, it will be harder for me to date because it would freak out anyone I was dating. So I took the advice, and kept the earth shattering diagnosis to myself, apart from telling my family and a few close friends. But no one apart from my care team has any idea just how much epilepsy has impacted my life. How managing it has become a huge part of my life. How hard I have to work just to feel like a fraction of my formal cells, before epilepsy and before the meds and how epilepsy derailed my original creative path. Whether or not I was conscious of it at the time. I didn't realize until during that first episode of creative space with all the he talks about getting unstuck creatively after losing his brother, and how it took 10 years before he healed enough to write original music again. Obvious story about the grieving process struck a chord with me on so many levels. But I guess the greatest one right now is that I realized I've also been grieving in my own way since getting diagnosed, grieving for the person I was before my diagnosis, and before going on medication, grieving for the loss of my old way of life. All of a sudden, the wings I had for as long as I could remember, were clipped. All of a sudden, my future wasn't so limitless. All of a sudden, the dream that had me bouncing out of bed every morning, turn to test. All of a sudden the new dream became how do I live in this new normal? How do I accept it? How do I make the best of it? The biggest impact was on my creative journey. And I could no longer see music as a viable career path. Making music to the backburner to building stability. Building rock on Philly, a music publication I ran at a time that I had a lot of passion for was traded in for a full time job with health benefits. With so much instability in my body. I had to build stability outside of it. My health, my brain had to be the priority. That first year was so tough, not knowing if the medication would work, or if I could handle the side effects. The first drug I was given made me slur my speech and I was so dizzy, I couldn't walk. I was afraid to leave my apartment. And then on top of that, I couldn't express what I was going through. I couldn't share my experience like I am now, I had so much fear and shame and a sense of being broken, being diagnosed with epilepsy. And as a single woman, I didn't have a partner to support me through this. It was me and my maker. Without that mustard seed of faith I had at the time, I don't know what I would have done. But I did eventually find a medication that worked with side effects that were tolerable. At least back then, once I was able to get back to going about my daily life, I soldiered through, like many people living with epilepsy do. I didn't talk about the condition, I show the world how strong I was by acting as if I didn't have epilepsy at all. And if someone did ask about it, I diminished the magnitude of diagnosis and how it really affects me physically, emotionally, mentally, Oh, I'm fine. I just take this little pill twice a day, and I'm good, no need to worry about me. I was in denial for a long time. And I guess in the beginning, I didn't see the side effects of the medication right away. But as I look back at how much I've changed, it's pretty incredible, actually. But it's also pretty incredible that I've been seizure free since going on it. And I'm so grateful for that. I've been on the fence about being open about my epilepsy journey for a while now. And sphere has always kept me from it. Also, I like being the light in the room. I don't want to drag the vibe down with friends on social media or even on this podcast. When I manage the conditions just right, and the list is long, eating clean, no alcohol, no screen time after 7pm working out every day to fight the fogginess and to lifts my mood from the medication, getting a full night's rest every night meditation doing all of that I feel close to my natural happy self. And because I'm disciplined about it 90% of the time, I'm content, as content as I can be in what has become my not so new normal. But of course, there are always things outside of my control. Like the other night, my neighbors decided to throw a party underneath my bedroom window until well past 1am And I got zero sleep. So the following day was a tough day, one of those 10% of the time days, because it wasn't safe for me to drive. And all of my plans for that gorgeous sunny day went out the window. Sleep deprivation is a big seizure trigger for me, as is alcohol and stress. And while I was doing well on the medication for a while, over the last year or so, I've been having some side effects creep up, one of them being insomnia, which doesn't work well with the sleep deprivation trigger. So driving has become a challenge, which makes it hard for me to be out and about given I live in the suburbs. The isolation is hard. But so is the guilt. I feel whenever someone sends me an invite to a premiere or performance or when someone asks why I'm not going to act in class anymore. There's so much I want to do so much I want to be. But until I get these side effects under control, this is my reality. So thank God for this podcast, though, because it's allowed me to stay connected and be social and supportive. And sometimes I do get a ride to a show or a party or a hike or whatever. And that's always much appreciated. Asking is hard for me though, because I'm such an independent person by nature. And because I don't want to be a burden to people. But living with epilepsy has helped me get better with asking for help when I need it a silver lining. So you may be wondering, why am I talking about epilepsy now after all this time? Well, I'm tired of running and being silent has hurt me. It's hurt my creativity. It's prevented me from loving and accepting myself fully epilepsy and doll. You can't be selectively vulnerable. I'm going to repeat that. You can't be selectively vulnerable. You have to show up as your full self. And epilepsy is part of my story. It's not all of my story, but it's a puzzle piece. I can't sweep under the rug anymore. And who knows. Maybe by being more open about it. I'll start feeling better physically too. And maybe it will inspire someone else living with the condition. I understand the risks involved with me being so open about epilepsy. People may not want to work with me You guys may not want to date me. I may even lose a few podcast listeners, you never know. However, I've come to the conclusion that those aren't my people anyway, because of progress is ever going to be made epilepsy research. This is something that needs to be talked about. One in 26 people will develop epilepsy in their lifetime. Yes, one in 26. That's a lot of people. And most people don't even know what to do when someone has a seizure. And this is due to a lack of awareness about the condition. I hope I can inspire others to be more vocal about their epilepsy. And I hope we can inspire empathy and understanding and those who don't have epilepsy. It's a tough battle. And like all battles, no one understands the battle as much as the person going through it. Everyone's situation is unique. I believe with all of my hearts that there will be a cure for epilepsy in my lifetime. I'm speaking it out into the universe. But we can't get there if we ignore it. If we sweep it under the rug. If you're still listening, thank you so much for taking the time to hear my story. The mission of the creative space podcast remains intact. We are still here to explore, learn and grow and creativity together. As I mentioned earlier, epilepsy is just part of my story and my creative journey. Not all of it, but it's definitely made an impact. And I feel like such a weight has been lifted from talking about it here. Anyways, thank you so much for tuning in to grow in creativity. I love to know what you thought of today's episode. You can reach out to me on social media at Jennifer Logue or leave a review for creative space on Apple podcasts so more people can discover it. I appreciate you so much for being here. My name is Jennifer Logue and thanks for listening to this episode of creative space. Until next time,