Raising Awareness for All Types of Seizures

I've been living with focal aware seizures since I was eight years old. These seizures typically last anywhere from a few seconds to 30 seconds. Initially, doctors weren’t even sure if it was epilepsy. Fortunately, my motor skills remain unaffected, and I am always conscious during a seizure. The only time my vocalizations were impacted was during one episode. As I’ve gotten older, however, I’ve started humming and even singing during seizures.

One of the biggest challenges I face is the stigma surrounding epilepsy, particularly at work. Not everyone understands it, and this makes it difficult to have open conversations. About eight years ago, I faced discrimination at work because I was open about my epilepsy, which made me retreat even further. Despite that experience, I told myself I had nothing to lose but my voice, and I wanted to share my story. I began speaking out to see if anyone else had similar experiences—particularly those who, like me, remain conscious and vocal during their seizures. The more we talk about it, the less taboo it becomes, and the more we can educate others about epilepsy.

The issue is that epilepsy isn’t discussed in schools, even though many other disorders are. Most of the time, it feels like epilepsy is only addressed when a child has a tonic-clonic seizure. However, conditions like absence, complex, or partial seizures are rarely mentioned, and I want to change that. I want to break the stigma and raise awareness for all types of seizures.

Over the years, I’ve tried everything from the keto diet to countless anti-seizure medications. Recently, my neurologist discovered activity in my right frontal lobe, and I am now considering brain surgery as a potential option. I’m open to educating others about the fact that not all epilepsy is the same. Seizures differ for each person, with unique triggers and symptoms. I am currently exploring another hospital stay to help me understand whether surgery is the right choice. My goal is to work with children or others living with epilepsy, raising awareness about how it impacts families—especially when 1 in 26 people will have epilepsy, and countless children in classrooms across the United States are affected by it.

I’ve traveled to over 30 countries and lived in Europe, and I try not to let epilepsy stop me from experiencing life. But it’s still challenging at times to maintain a “normal” life, especially when there are socially awkward moments. I want to be an advocate and a voice for others who are going through the same thing. There are so many types of seizures, yet most people only know about the ones they’ve seen on TV or in movies. Epilepsy is far more complex than the media often portrays, and while there’s no cure yet, I feel fortunate that doctors have pinpointed a focal area in my brain where the activity originates. As a surgery candidate, this brings its own set of fears, but I’m choosing to focus on the potential for improvement.

Having a support system is crucial. It’s important to have people around you whom you trust and who understand how epilepsy affects you socially, emotionally, and physically. Through my Instagram account, @travelingwithEpilepsy, I’ve been able to connect with others around the world who share similar experiences. It helped me build a sense of community and reminded me that I am not alone. Even though it’s hard, don’t ever feel ashamed—remember that you are loved and supported, even after a seizure when you might feel anxious or isolated.

I’ve participated in epilepsy awareness conventions in Orange County and learned so much, especially about women living with epilepsy. In the past couple of years, I’ve truly accepted epilepsy as part of my life—not something that defines me, but something I live with. I have so many other passions, including yoga, working with children, traveling, hiking, camping, and attending music festivals. Epilepsy doesn’t have to define me, and I want others to know that they, too, can live life to the fullest.