Nicole Evans’ journey to an epilepsy diagnosis is far from what’s considered “normal.” Soon after being diagnosed with acute lymphoblastic leukemia at the age of seven, she developed a rare brain fungus. While two craniotomies did fully remove it, she developed epilepsy as a result of this ordeal, which she’s had to deal with ever since.
“I was heavily into bodybuilding at the age of 21, when my seizures started turning into grand mal seizures,” she said. “That’s when I learned the effects that my bodybuilding journey – the restricting of my diet, the heavy exercise – was having on my brain,” she said. “It was really difficult because, for fourteen years, my seizures had been managed with medicine so I had felt like I was out of the woods, like I was finally living my life. And then I was back in the hospital.”
The following year, Nicole lost her driver’s license because of her grand mal seizures.
“I really lost my sense of freedom at the time when you should be living your most free life,” she said. “It took a toll on my entire lifestyle because it had grown bigger than just a physical ailment that I was dealing with. It was very hard mentally, and it made me a big advocate for mental health.”
As a result, the gym now represents something completely different to Nicole.
“When I was bodybuilding, there was always a competitive edge behind my fitness and my nutrition. But now, my fitness journey is more about the mental health aspect of what it does for me,” she said. “Working out is about taking care of myself mentally, and it’s also about proving that I’m still capable. I love the feeling of feeling strong. It reminds me that I’m not the victim of anything; I’m the victor because I’m victorious through all of this.”
While you’ll never find Nicole on an elliptical or a treadmill, you can still find her lifting weights and doing group exercise classes. Medication continues to play a significant role in her epilepsy management, and she takes them twice daily to keep her seizures under control. With this regime, Nicole hasn’t had a grand mal seizure since December 2016 and hasn’t had a focal seizure since March 2022.
“If this were to suddenly stop working, I’d have to go back to the drawing board with my doctors and see what medication changes we need to make,” she said. “If I choose to have kids someday, I’ll have to stop this medication that’s working so well for me and find an alternative medication, solely because it has a side effect that can cause birth defects. There are a lot of parts to this condition that I don’t think people realize is a part of the package of having epilepsy.”
Despite all of this, Nicole remains grateful to have survived blood cancer and an incredibly rare brain fungus as a child, and to be in such a well-managed place with her epilepsy today.
“I know a lot of people who have epilepsy that is so much worse than mine, and who can’t control their seizures with medication so they can’t drive. I look at them and I think, ‘I’m so lucky’ which some people think is weird,” she said. “I wouldn’t wish my illness on anybody, but if you had told me in 2017 that I’d just bought a new car in 2023, I would think you’re lying to me. Back then, I was having to take Ubers to work every day so I could make enough money to pay for a car that I wasn’t allowed to drive because of my seizures.”
Today, at 28-years-old, Nicole can easily articulate how transformative the epilepsy community has been for her.
“Early on, I found a lot of resources on social media using #EpilepsyWarriors,” she said. “My Instagram DMs are always open for people who need support, because it’s so important to speak with people who also know what it’s like to live with epilepsy. I also encourage everyone to find a support group where you feel empowered, and where you know that community is in this with you.”
Looking ahead to the future of epilepsy treatment, Nicole is hopeful. She’s seen how much craniotomies have evolved since she had them as a child, and she continues to hope for a similar evolution for epilepsy care and treatment.
“What I would really like to see – for any disease that is currently seen as life-altering – is that it’s eventually treated like the flu is today, compared to how deadly it was 100 years ago,” she said. “I want us to get to a point where epilepsy isn’t even life-altering.”