Be Your Own Advocate

I started having seizures in my childhood. I had my first seizure when I was 2. During my first EEG at that time, the neurologist found scar tissue on the left side of my brain. When I was having seizures, they were bad to the point where I would stop breathing, but as I got older, they were under more control. I was still having seizures, but my medication was helping. In 2023, I was seizure-free for a year. In 2024, I started having this weird, almost déjà vu feeling, and my whole body was tingling and numb. It would happen every day, and I would have to go to the ER often to see what was wrong. 

After a lot of confusion, seeing multiple doctors, searching for answers, multiple EEGs, hospital visits, and seizures, I finally found more of an answer about why my seizures seemed different and came more frequently than before. In 2025, I was in the epilepsy monitoring unit for a week, and I found out that I have focal seizures. Living with epilepsy is much harder for me now because my seizures come whenever. Before, migraines were a way I knew my seizures were coming, but now my seizures come with or without a headache. I also get short of breath when I have an aura, and now I use oxygen as needed at home and on the go. Also, I have migraines and other health challenges. 

There have been mental, physical, and emotional challenges. There have also been close relationships that were lost and struggles with getting support from people who didn't understand me and my epilepsy. But I do have support from my parents, my youngest brother, and my bonus mom and bonus sister. It’s hard to imagine all the pain the people who support and love me see me go through focal seizures. There’s nothing they can do but keep me safe. Nothing can stop the seizure besides my brain. I do not qualify for surgery on the scar tissue on my brain because it can affect my daily life; epilepsy is lifelong for me.

Epilepsy has made people scared of me, which made me scared of myself. Through the seizures and pain, I know I have to continue to fight this battle for the foreseeable future. I believe in myself, and I know the people who support me do, too. Spreading awareness about epilepsy and sharing my story is one way I can advocate for myself and others who live with it daily. I found out that even with my epilepsy, I can do things I never thought I could, like cooking, baking, even a photo shoot! I’ve learned to love myself even though I have epilepsy and that it’s a forever journey; I will not let my disability hold me back.

Epilepsy isn't talked about enough, and not everyone has resources to advocate for themselves.  I can talk about my epilepsy and what triggers it. The information on the Epilepsy Foundation’s website has helped me understand the medication better, including side effects. I advocate for my epilepsy through social media, family members, and the Epilepsy Foundation. A second challenge I was able to overcome is cooking and baking. I couldn’t bake before because I didn't have any support and guidance. I was able to overcome baking and cooking with epilepsy by taking breaks and taking it slow while baking or cooking.

I decided to share this because it needs to be heard. We all have to start somewhere, and this has been something I have had since I was two. It’s hard to find people who will listen, and I've had epilepsy for my entire life. I want to share my epilepsy with others, and with an audience who will hear me out. Stand up for yourself, love yourself even though you have epilepsy, be your own advocate, and don’t give up on your journey.