Advocacy plays a key role in spreading awareness and reducing the stigma surrounding epilepsy, and advocacy works best when there is a connection between people.
Walk captain Carrie Buck knows seeking out connections with others who understand the struggle of epilepsy is the first step in creating more awareness. 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.
Carrie’s son Cody was diagnosed with epilepsy 7 years ago. Cody went through years of seeing various doctors, getting new diagnoses, and trying different medications, but still found no luck in controlling his seizures. Carrie became frustrated and admits she felt denial about her son’s condition.
After struggling for a long time to find the strength and confidence needed to step out into the epilepsy community, Carrie and Cody found those important and deep connections. “You are just diagnosed and don’t know anyone, there is a lack of connection,” she explains.
It took Carrie fourteen months from the time she learned about EFMN until she went to her first event with Cody. She was surprised to run into a familiar face: another mother who she had seen every morning for years bringing Cody to preschool. She was happily surprised to find someone that lives in the same town and also has a child with epilepsy.
Carrie’s very first EFMN event already allowed for a new connection to blossom, and now she says her new friend is “not just an epilepsy friend, but she is a good friend.”
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.” This year Carrie and the Kourageous Kids team will be walking once again. They walk for epilepsy and EFMN, but more importantly, they walk for connection.