Kenzie O’Connell, professional golfer, is one of 3.4 million people in the United States living with epilepsy. Though she’s had her own tribulations while dealing with her condition, she is now using her platform to inspire others who are struggling with the brain disorder.
O’Connell was born in Sidney, Nebraska. Her parents introduced her to golf at age five, and with their encouragement, she knew that the sport was her ticket to bigger and better things.
“Growing up, I was never good at school,” says O’Connell. “I was very dyslexic, and I was born in a very small town without much to do. For college, I knew I wasn’t going to get in for my academics, so golf was really that driving force for me. If I was going to succeed at anything, it was going to be golf.”
A sudden diagnosis
After watching other female golfers play on TV, O’Connell embraced the idea of pursuing golf professionally. She didn’t know, however, that she would be diagnosed with epilepsy when she started having seizures at age 21.
O’Connell’s form of epilepsy involves her having vestibular seizures, which are vertigo induced. “I didn’t know that you could even get epilepsy as an adult,” she says. “I knew about epilepsy from movies and what you see on TV, which is so unrealistic.”
When she first received her diagnosis, O’Connell says golf was the last thing on her mind. Instead, she realized she would quickly have to come to terms with a loss of independence.
A loss of independence
“My form [of epilepsy] was not anything that I had even heard or seen before, and it didn’t make sense to me,” she explains. “I’ve always been very independent. I traveled a lot, I like exploring, and I like playing tournaments. I lost my independence pretty quickly. After I got diagnosed and I started getting things under control, that’s when I realized, oh my gosh, this is going to affect certain parts of my game.”
At the time of her diagnosis, O’Connell was having six to seven seizures a day. It took her a while to find a treatment process that actually worked for her. “I had an extreme amount of weight loss when I first got on my medication, so I dropped a lot of weight starting out,” she says. “This was from a combination of being super depressed as everything was being pulled out from underneath me, but also just a side effect from the medicine is losing weight.”
Eventually, with the help of her medical team, O’Connell was able to strike a balance with the amount of medication she was on. She started focusing on her golf career again, but wasn’t immediately sure how much she wanted to share online about her epilepsy experience.
“It took me a long time to actually feel comfortable to even say publicly that I have epilepsy,” O’Connell says. “Looking back now, I feel like I could have said something earlier, but I didn’t want people to think that I was trying to feel sorry for myself. I wanted to do things on my own, without anyone knowing that I had epilepsy.”
After she had established herself in the world of professional golf, O’Connell then felt more comfortable with the idea of publicly sharing her experience with her condition, especially so that she could advocate for others with the brain disorder.
“There are day-to-day things that are hard on people with epilepsy. I have gotten kicked out of a restaurant before because they thought I was drunk,” she shares. “People need to educate themselves on how there are so many different forms of epilepsy. I would compare it to a snowflake. Someone’s epilepsy is very precise to them as everyone’s brain is different.”
O’Connell also explains that the lack of independence epilepsy affords is exacerbated during the COVID-19 pandemic, and staying empowered and positive can be difficult.
“I haven’t driven in two and a half years,” she says. “My husband is the best Uber driver there is! But going from not feeling independent before the pandemic, and then being inside all the time and not having your independence because there are not a lot of accessible places open is a lot harder on people with epilepsy.”
Despite these challenges, O’Connell is doing her best to share positivity with her online community, and she continues to advocate for people with epilepsy through her ambassadorship with organizations such as the Epilepsy Foundation of America and the Epilepsy Foundation of Colorado.
“I feel like when you have something going on with your brain, it can be so overwhelming and you can sometimes feel very depressed and alone,” O’Connell says. “I kept telling myself that it’s going to get better, and that if it’s always going to be this way, I can find a way to fight through this. I think that’s the one thing that I would want anybody, not just athletes but anyone who has this condition, to know. You are not alone.”