Living with Epilepsy: My Journey of Growth and Resilience

My journey with epilepsy has been full of ups and downs, but it has also taught me so much about resilience and gratitude. My mother had epilepsy, but she was lucky enough to grow out of it after experiencing only partial seizures. My own experience has been a bit different. Over time, my seizures have changed—starting as tonic-clonic, then transitioning to partial complex with secondary generalization, and now focal seizures.

Currently, I’m living with mesial temporal sclerosis (MTS), also sometimes called temporal lobe epilepsy (TLE). MTS involves scarring in the hippocampus, a part of the brain that plays a significant role in memory and learning. While it can lead to focal seizures, the tools and therapies available today have helped me live a whole and meaningful life.

Although surgery isn’t an option for me, I’ve found incredible support through my vagus nerve stimulator (VNS). I’ll admit, I wasn’t a fan at first, but now that I’m in the sweet spot of its effectiveness—4 to 6 years post-implant—it has truly been life-changing! With the right combination of treatments, I’ve discovered what works best for me and found a rhythm that helps me thrive.

I’ve been fortunate to receive care from some amazing places, including the Mayo Clinic in Minnesota and Rush in Chicago. Each experience has helped shape my understanding of my condition and given me the tools to manage it with confidence and hope.

Living with mesial temporal sclerosis can bring challenges. Still, it’s also a reminder to appreciate the little victories, stay curious about new treatments, and always move forward with a positive mindset. Every day is a new chance to grow, learn, and live well!