Running To Find A Cure Through Athletes vs Epilepsy
Written by Amy Biviano. Amy was diagnosed with partial complex epilepsy in 1997. She is a member of Athletes vs Epilepsy, and raising funds to help find cures and overcome the challenges created by epilepsy. This year she hopes to raise funds to find a cure of Epilepsy and share the message by running the Biofreeze San Francisco Marathon. You can read learn more about Athletes vs Epilepsy through her fundraising page.
I had my first grand mal seizure right after graduating from high school, while working as a counselor at a Girl Scout camp. It was terrifying, both for me and the girls in my care. When I received my diagnosis of epilepsy, I didn’t know what I would be able to do with my life. I had worked so hard and was about to start college at Yale University, but had no idea if my brain was up to it anymore. I had no idea when the next seizure would strike or how the medication would affect me. I didn’t know if I had a future. I felt like I had no control.
But I am a very lucky woman. While it was an enormous challenge at the beginning, I was able to do well in college. I met an amazing guy who has stayed with me and supported me through it all. Andrew and I started dating right away and this year we will celebrate our 22nd wedding anniversary. We’ve been through a lot, including brain surgery in 2003 and two high risk pregnancies that gave us two amazing, strong, active sons.
I became a runner in 2011 as a way to feel strong before another surgery that year. Previously a couch potato, I started the Couch to 5K program and totally fell in love with the sense of power and freedom that running gave me. It was super hard at first, fighting through extra weight and doing something that felt totally different than anything I had ever done. I was never an athlete, so at the beginning walking for 30 minutes was a challenge, especially since we live in a hilly part of Washington State.
But the more I pushed through, usually walking up hills and running down them, the stronger I felt. The stronger I felt, the more power over my body I had – a totally new feeling. And the more I conquered something I originally struggled with, the more confidence I gained. I have taken that confidence and become more resilient. I still have seizures daily, mostly while I sleep, but I am able to have a rewarding career as an accountant in an organization that advocates for people with disabilities and mentor others with seizure disorders.
Running is now a central part of my life and identity. I have run 17 marathons and 5 ultras to date, including my most recent celebration of life: running 26 miles to celebrate the 26th anniversary of my epilepsy diagnosis this May. I also run my age on my birthday every year; I’m excited to do 45 miles this November.
I run with the Athletes Versus Epilepsy program of the Epilepsy Foundation, raising money for research. The latest stats say that 1 in 26 of us will have epilepsy in our lifetime; that’s more than autism, Parkinson’s, and Alzheimer’s combined. It still remains one of the least funded for research. We need to learn more about our brains and help the millions of folks with this disorder! Visit my fundraising link here: Amy’s Athletes vs Epilepsy Fundraiser
The Biofreeze SF Marathon will be extra special to me as a big accomplishment before my next epilepsy operation. I have a pretty rare type of seizure disorder and the docs at UCSF are the internationally recognized experts in my field. So, with their permission (I promise!) I’m running the Double Up Challenge on July 27th and 28th, then checking into the hospital 8 days after the marathon for brain surgery. Wish me luck!
July 3, 2019 (6:57 pm)
I am willing to run with someone who needs help.
July 14, 2019 (1:29 pm)
I’ve been living with Epilepsy all my life & it is a serious disease that needs a cure I’m just happy to still be alive I’d like to receive emails of all events happening so I can be involved in some way💜😃