Building Empathy by Sharing My Story

My name is Livi, and I was diagnosed with epilepsy three years ago after COVID. Since then, we’ve been to eight hospitals trying to understand why my epilepsy keeps changing and how to prevent seizures from affecting my organs, cognitive functioning, pain levels, stomach, autonomic nervous system, and ability to be in school. We continue to work closely with our amazing doctors, trying different treatments, and are about to have the first of several brain surgeries in hopes of stopping the seizures.

I overcome these challenges, and many others, by learning about new treatments and innovations, trusting my body, and listening to what it needs. While it’s hard, this journey has also made me grateful for what I’ve learned about this disease, the empathy I’ve gained for others with illnesses that have limited answers, my deeper understanding of my body, and my hope for future treatments.

It’s difficult to navigate everyday life and feel different in your own body, especially at school. But it has also made me appreciate my family, my dogs, and the ability to rest and be present. Medicine is changing so quickly, which gives me hope. I believe in doing everything I can to stay healthy by resting, exercising, eating well, trusting my body’s limits, and focusing on what I can do.

I think it’s incredibly important to share our story because many people don’t understand epilepsy or how much of the body it can affect, or how challenging medication can be for the brain and body. By sharing, I hope to help others learn, build empathy, and be kinder to anyone facing challenges, which is all of us at different times.

My family and I are very involved in Epilepsy Foundation programs, events, and services on both coasts. Connecting with others who have lived this has been extremely meaningful, and I hope to continue contributing to the field and helping people feel less alone.