From Rock Bottom to Thriving

I am 1 in 26 people living with epilepsy. I was diagnosed in 2007 when I was fifteen years old. I had my first tonic-clonic seizure while sleeping over at my best friend’s house. I woke up in the middle of the night with my best friend’s mom rubbing my back and telling me it was okay. A few weeks later, I had a second tonic-clonic seizure at home. After that, I was officially diagnosed with epilepsy and put on anti-seizure medication.

Throughout my teens, twenties, and early thirties, my seizure type and frequency changed. I experienced tonic-clonic seizures, absence seizures, and focal impaired awareness seizures. I was prescribed several different anti-seizure medications, but none of them stopped my seizures. All they did was give me awful side effects. I was sad, moody, and lost my appetite. I even developed several different eating disorders. I was very embarrassed and ashamed of my epilepsy. I didn’t know anyone else who had epilepsy or who understood what I was going through. I didn’t know how to talk about my feelings or experiences. All of this led me to become extremely depressed and anxious. In my early twenties, I even became suicidal and started planning how I would end my life. I told myself I would never live a normal life, so there was no point in staying alive.

When I was 21, I met my now-husband, Cory, who showed me that I was worthy of love from others and myself. By showing me love, Cory helped me realize that my life was worth living. I was still having seizures regularly, but I found ways to cope. I started journaling, meditating, exercising regularly, eating healthy foods that fueled my body, and talking to a therapist.

At 31, my life took a major turn. I was running an errand for my boss at the time, after being cleared to drive again, when I had a seizure behind the wheel. One moment I was on the road, and the next thing I knew, I had pulled into my driveway in a totaled car. I had to surrender my driver’s license, and I lost all hope that I would ever be seizure-free. Later that same year, my hope was renewed when I finally got an answer as to why I was having seizures. After extensive testing, I learned that I had a rare type of brain tumor called a hypothalamic hamartoma, which was causing my seizures. Learning about hypothalamic hamartomas explained so much. I found out that the giggling episodes at inappropriate times I had as a baby and child were probably gelastic seizures that were caused by the brain tumor. I also learned that reading comprehension issues I had as a child may have been related to the hypothalamic hamartoma. 

When I first found out about the brain tumor, I was scared but also relieved to finally have an answer. I was frustrated, too, because I had been getting regular MRIs since I was 2 years old and diagnosed with precocious puberty. At the time, my family was told the cause of my precocious puberty was a pituitary adenoma— a tumor on my pituitary gland. It felt overwhelming to face yet another diagnosis after everything I’d already been through, which was years of treatment for early puberty, eye surgery at five years old for lazy eyes, and scoliosis surgery at thirteen.

Despite my fear, I decided to go forward with brain surgery at 32, supported by my family. I underwent a procedure called laser interstitial thermal therapy. The surgery only lasted a few hours, and my entire family was there for me on the day of the operation. They even wore purple in honor of epilepsy awareness. The results were life-changing. I went from having about five focal impaired awareness and absence seizures a week to being completely seizure-free.

Over the past year, I’ve developed a strong passion for epilepsy awareness. I aim to educate others about the various types of seizures and what living with epilepsy truly involves. It’s not just about tonic-clonic seizures; epilepsy encompasses many different seizure types and often includes mental health struggles and feelings of isolation.

To others living with epilepsy, I like to share the two things that helped me most on my journey. First, find a support system or someone you can count on. Having people who care can improve your life in powerful ways, whether you have epilepsy or not. Second, embrace your diagnosis and be proud of who you are. Accepting an epilepsy diagnosis can take time and effort, but you are always worth that effort. It’s never too late to ask for help, make positive changes, or learn to love yourself.