How I Live With Epilepsy and Without Limitations

Toni is sharing her journey with seizures and epilepsy and how she hasn't let it stop her from being successful

By Toni Pelletier , Minnesota

Person with Epilepsy

Thursday, August 17, 2023

On a beautiful summer day at the age of 23, I visited my first neurologist. His people skills could have been better, but he was my ticket to figuring out why I had seizures since I was a kid. After a day of sticky electrodes, strobe lights, and being stuck in an MRI, I got my answer: a stroke at birth caused significant brain damage. My neurologist diagnosed me with epilepsy and couldn't believe that I didn't have serious developmental delays. It was shocking to learn, but it made sense once I looked back on my life. 

I was known as the easiest baby because all I did was "lay around and smile for the first year of my life." I had a busy Irish twin and a teenage mom, who was happy I didn't move much and was so well-behaved. No one knew my brain was rewiring itself. Brains are such mysterious, complicated, and magical things! I was a distracted child who sometimes wouldn't respond when spoken to, which I assume were absence seizures, not stubbornness, but if I'm honest, it may have been both!  

At 11, I woke up in the back of an ambulance after a generalized tonic-clonic seizure and thought I had died. It is still the scariest moment of my life. That day was the first time anyone realized there might be something wrong with me. I was eventually prescribed anti-seizure medications and spent the next decade having focal onset impaired awareness seizures, which my friends lovingly referred to as "doing the hokey pokey" because my arm moved out and would shake all about. 

However, despite all the fear, anxiety, struggles, and uncertainty I encountered throughout my life, I wouldn't take the late diagnosis back. Not knowing I had a stroke was an odd blessing. No one knew to put limitations on me the day I was born. There weren't lowered expectations about what I could accomplish. I was never once put in a protective bubble or kept from activities. So, in the middle of having seizures, I made teenage mistakes, played sports, and had a busy social life. I received academic scholarships and graduated with honors from a top university. I lived fully and succeeded because no one, like my new neurologist, told me I couldn't. 

It has been exactly 23 years since I was diagnosed with epilepsy, and I still try to live without limitations. Epilepsy is a personal journey for each of us, and we should all celebrate our successes, no matter how small.   

Reviewed By: Sara Wyen

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.