She felt alone in coping with her son's epilepsy until she decided to take one simple, easy step: talking about it. "As difficult as it is, it's better to talk about it than to not talk about it," Carrie says. "You don't have to share your whole story, but letting people know that you are impacted by epilepsy might be the only way you meet the other person who is also impacted by it."
Carrie walks to support EFMN each year because she wants everyone impacted by epilepsy to find comfort in finding new connections in the same way she did. She admits her drive to the walk feels emotionally heavy every year, but each year when she arrives she finds a profound sense of joy. Her son, Cody, was diagnosed with epilepsy in 2014.
EFMN is where Carrie found her first sense of support and connection that keeps her positive in her son's epilepsy journey. She knows wholeheartedly that the importance of finding connections is enough to create purpose in the EFMN walks each year, because those connections make advocacy possible.
"Even if you can't raise a lot of money doesn't mean you shouldn't go. In addition to the fundraising, there are other reasons to go." Cody's team, Kourageous Kids, walk for epilepsy and EFMN, but more importantly, they walk for connection.
The many years of caring for and seeing the difficulties epilepsy patients face inspires these caregivers to show their support and solidarity. There is something special about joining the epilepsy community and participating in the EFMN Walks in Rochester. As Dr. Britton puts it, “We get the opportunity to be with them in a different way than the usual appointments. We get to show up in a more casual, person-to-person setting.”
The walks reveal a special connection between the caregivers and the epilepsy patients that they describe as a common humanity. The power of creating this connection proves the importance of what Dr. Britton and Cindy do every day.
When Dr. Britton, Cindy, and other caregivers from Rochester walk, they see it as a good way to help reduce stigma. "I can't blame people for being that way," Dr. Britton says about the patients who are hesitant to share about their condition. He sees firsthand the struggles they all go through as they try to cope with epilepsy. Epilepsy is a big part of his and Cindy's everyday lives and walking shows his solidarity with his community.
Epilepsy is what unites us, and together we will walk in solidarity for epilepsy.