In 2003, Congress formally recognized November as Epilepsy Awareness month. Epilepsy is an incurable neurological condition, which causes seizures and affects 60 million people worldwide. Raising awareness about the condition is critical to many of us in the epilepsy community. I’ve highlighted some Epilepsy Warriors’ stories here to honor Epilepsy Awareness month.
Alison Appleby is a 17-year-old beauty pageant queen from Northern Texas. Ryan O’Connor is a veteran from central Florida. As a middle-aged community activist mom from outside Boston, you might think I have little in common with Ryan and Alison. But beneath the surface of the demographics and regional/cultural differences lies an important commonality: We are all Epilepsy Warriors. Informally coined by the epilepsy community in recent years, an Epilepsy Warrior is somebody who dedicates time and resources to elevate awareness about the challenges people with epilepsy face. Most Warriors either have epilepsy or care for somebody who does.
Ryan O’Connor – who goes by ROC – is a veteran who served in the military in the late 90’s. In 2011, at age 36 he was diagnosed with epilepsy. Like mine, his seizures were impossible to control with medications. Mr. O’Connor was so perturbed by the lack of solutions for uncontrollable seizures, that in 2019 he established his own non-profit, ROC Stop Seizures. The organization’s mission is to raise awareness about epilepsy and provide resources to veterans with battle-induced seizures. To further the mission, Mr. O’Connor recently organized a 1,000 mile walk for seizures from his hometown of Longwood, Florida to Fenton, Missouri. Trailed by his wife Marissa who drove their car, Mr. O’Connor left Longwood Florida on October 1st, walking 40-50 miles daily en route to Fenton. His journey was covered by local TV stations multiple times. Due to circumstances unrelated to his epilepsy or walking conditions, Mr. O’Connor’s journey ended on October 15th in Dothan, Alabama, after almost 400 miles. Although unhappy that he couldn’t complete the 1,000 miles, Mr. O’Connor was so excited about his success at elevating epilepsy awareness that he’s already planning his next Journey of 1,000 Miles for fall 2023.
On the ninth day of Mr. O’Connor’s walk, over 900 miles away in Sherman, Texas 17-year-old Alison Appleby was crowned Miss Dallas Teen USA, alongside her service dog. Ms. Appleby has had epilepsy for years but her symptoms – staring into space and speaking incoherently – were misdiagnosed most of her life. When she was correctly diagnosed with epilepsy in May 2021, Ms. Appleby said her life finally made sense.
Alison Appleby had never been in a pageant before, but when someone told her she couldn’t compete because she had a disability, she set out to prove them wrong. A pageant-world newcomer, Ms. Appleby said her goal was to show up with her service dog, Brady and “show people you can do it with a disability. I was still terrified the whole time … but having Brady by my side made it so much easier.”
Pageant director, Jennifer Ortiz said, “Alison really won the entire pageant in interview. She was just absolutely amazing…. A phenomenal woman all the way around.” The Miss Dallas Teen pageant is an official recruiting system for Miss Texas USA — which means Ms. Appleby will be competing for Miss Texas Teen in May 2023.
According to Ms. Appleby, “Part of the appeal with pageants was having that platform to raise awareness…. And personally, my platform is now going to be used for advocating for disabilities.” Ms. Appleby’s message to other young people with disabilities is to embrace it. “Don’t let your setbacks make you give up on your dreams,” she said. “You don’t have to give up on life just because you have an illness.” I have lost out on job opportunities and been told not to pursue my own life ambitions because of my epilepsy, so Ms. Appleby’s words resonate loudly with me. I’m thrilled to know she plans to use her pageant platform to spread them. Nobody wants to be defined by their illness.
There are 3.4 million people in America with epilepsy. In 2014 I finally overcame my terror of brain surgery, which was very complicated but ultimately stopped my seizures. Now that I no longer have them, I have joined the Epilepsy Warriors, raising awareness about epilepsy on my website where blog about issues relevant to those who have epilepsy. That I found Ms. Appleby’s and Mr. O’Connor’s stories in the same month is more proof that we Epilepsy Warriors are everywhere. We can’t all establish nonprofits, win pageants, or launch blogs. But simply navigating the world while managing seizures and explaining them to those who witness them requires herculean effort and courage only possessed by warriors. Onward.