This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!
Recently, someone asked me to talk to a small group. I should choose a story that is inspiring, something that will relate to these young adults, and something that will stick with them as they start a new journey. I told the woman who asked me that I would have to think about it, as I wasn’t sure I could take on one more thing in my busy life. She explained that it didn’t have to be long and that I have plenty to talk about, due to my epilepsy. She suggested things like how I was faced with so many issues and I have come out on top. I could share how epilepsy made things hard but it didn’t stop me. Maybe I could share my story about how adversity impacted my life. These are all valid topics and I’m proud of them.
I can’t help but wonder: is that my only story? Is this how people identify me…as the girl with epilepsy who ended up doing well in life, despite doctors telling me I may not? Is the part of my life that revolves around epilepsy the most impressive thing about me? Are other areas of my life, and myself, less relevant.
Don’t get me wrong–I am proud of my epilepsy story and who I am today because of it. That said, it isn’t my only story. I’m a therapist who works with families facing extreme challenges. I’m a new wife (yay!). I love to dance but have trouble doing so now. I celebrate my birthday for the entire week. I have a wonderful family with stories of our own. I have a deep faith that has faced challenges but made me closer to God. I can get really stressed out and not practice self-care. My goals for life have changed over time. The person I am now is shaped by good and bad decisions I’ve made in life…trust me, there are some stories there! These stories are all my own. Some have taught me lessons, some haven’t. Some of them I am proud of, some of them I am not. You’ll notice that not one of these stories has the word epilepsy in it.
Ignoring other parts of my life that don’t focus on my epilepsy story would take away from who I am. I don’t view myself as one dimensional and it’s weird to think that others do. Maybe I haven’t shared my other stories enough. Maybe people just think of me as the girl with seizures because I don’t participate in fundraisers for the stress I feel or the bad decisions I’ve made like I do for epilepsy.
I’m not quite sure how to get more creative about portraying myself. I don’t want to downplay my epilepsy journey but I do want to make myself about more than that journey. I will figure it out and add this story to my long list of them.
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Leila shares stories on stigma and epilepsy based on her experiences and what she hears from others. She was diagnosed with Epilepsy at age 8 and is based in Pennsylvania.