Sharing My Journey as an Epilepsy Lifestyle Advocate

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Chelle is sharing her eJourney as an epilepsy lifestyle advocate

By Chelle

Monday, October 31, 2022

Four years ago, my life changed forever. I was working as an emergency room nurse during a night shift when I suddenly felt a little lightheaded and passed out. When I woke up, I learned I had my first tonic-clonic seizure and that I would need to see a neurologist

The first few months leading up to my diagnosis of temporal lobe epilepsy and the year afterward were very dark times for me. I felt confined by all the limitations I now had and longed for the freedom I had before. Medications were a struggle to balance and there were times when I wondered what place I still had in this world. 

While I was recuperating and learning to manage my new life, I spent a lot of time scrolling through social media. It was an escape into the wonderful life of seeing the world through an online platform and many of the pictures inspired me. 

I had never really been an outdoors person before being diagnosed with epilepsy, but over time I learned the ins and outs of hiking, including how to do it safely with my epilepsy. In doing so, I learned the importance of creating a huge, supportive network. 

In 2021, my New Year’s resolution was to see as many places as possible and hike my dream destinations. I traveled to 21 national parks and 36 states, all while managing my temporal lobe epilepsy. Exploring the forests, sand dunes, glacier lakes, and snowy summits gave me space to think.  

As I moved away from the life I previously knew, I slowly started to gain solace and peace in my diagnosis. It was through epilepsy that I gained a love of adventure and the outdoors – as well as a network of supportive friends and loved ones that would stand by me through anything. 

Fast forward to today. I still have seizures from time to time, and not everything is 100% every day. There have been quite a few canceled trips. 

Now, I am so passionate about sharing my story and the stories of other people with epilepsy. I am deeply proud to be one of the “1 in 26” with epilepsy and want to show others that life doesn’t end when you get diagnosed. In fact, it can be a new beginning where you prioritize your life on your terms and say yes to all new experiences.  

I’m excited to be partnering with the Epilepsy Foundation as an Epilepsy Lifestyle Advocate to share my experiences and help people better understand what it’s like to live with epilepsy

Epilepsy awareness is more than just talking about seizures and a diagnosis. It’s talking about the emotions and medication struggles we all go through. It’s sharing with the public what to do when they see someone having a seizure. It's normalizing the conversations about hidden disabilities. It’s having a network of people to remind you that you are not alone, and that the struggles you face are felt by many. For me, it’s giving a face to a life that is full of adventure and adversity both outdoors and indoors. 

Reviewed By: Sara Wyen

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