The Journey to Becoming An Epilepsy Warrior

Battling epilepsy is a roller coaster ride that tests both your mental and physical toughness. The challenges that come with epilepsy can seem unbearable at times. However, over time you will realize that you can overcome all these challenges. As you overcome these challenges, you will quickly notice that some of it happened in many different forms. If you think you’re stuck right now, I hope my good friend Chelsea (and some Eric Church) can help you see the light at the end of the tunnel.

1. Some of It You Learn the Hard Way

Yes, having our first seizures may seem like the hard part of our journey. However, what I learned from Chelsea is that patience can be a challenge we learn the hard way. “I didn’t get answers right away after all of my tests I went through. It took 12 years and an SEEG to get the right answers.” This made me realize how the majority of us go through a bunch of tests trying to figure out what exactly our next steps are. We will never get the answers we’re looking for right away. The hard part about our journey is waiting and rolling with the punches to get what we want. Patience is a virtue.

2. Some of It You Read on a Page

Chelsea is one of a few people I know who took on the challenge of an SEEG to get the answers they were looking for. This invasive surgery is a process not many enjoy but makes them so much stronger. During Chelsea’s SEEG she received a sheet of paper that showed her brain activity during her seizures. Chelsea described it great, “…it was scary but knowing what my brain was doing was a little jaw dropping.” Seeing how and what your brain is doing during a seizure can be scary, but it’s also pretty crazy too!

3. Some of It Comes from Age

As we grow older, we learn how to manage our epilepsy. However, in Chelsea’s case it was a little different. “As I got older, my seizures got worse.” Having to adapt your lifestyle multiple times because your seizures get worse is not easy. Give credit to Chelsea on this and for making the remark on how this “…brought me closer to being an epilepsy warrior.”

4. Some of It Never Comes Easy

We all know this is true for our daily lives and Chelsea made it clear during her comments. “Well duh! I was never able to drive, and still can’t. I’ve been on so many medications, through so many tests and seen so many neurologists it’s crazy.” I think this is a pretty accurate statement regarding our challenges with epilepsy.

5. Some of It You Maybe Can’t Even Use

After going through multiple tests and doctors’ appointments, we realize that not every epilepsy treatment is suitable for us. For everyone, it is rare that every single epilepsy treatment option is available for them. We need to realize from the beginning of our journey that we may not be able to use certain technology treatments or medications to control our seizures.

6. I Probably Don’t Know What I Think I Do

Chelsea hit this one on the dot. She brought up how “I didn’t think my seizures were that bad until I had my SEEG test. I saw what my brain was doing and what my body was going through. It was scary but necessary.” We don’t know everything about our seizures and we never will. They won’t control us, but they will definitely make us stronger.

Having epilepsy is a challenge not many want to have. However, if you embrace it like Chelsea does you can inspire so many people. #epilepsywarrior

Song Credit: Some of It by Eric Church