The following post may seem a bit, well, morbid. That’s because I believe firmly in the power of truth. When I talk about epilepsy I do not sugarcoat the hard parts, nor do I exaggerate or over-dramatize the easy parts. I like to tell it how it is. Most of the time, I talk about how much I love having epilepsy. It has been a significantly positive factor in my life, teaching me new things about myself and making me grateful for all the blessings in my life. While I would certainly never wish epilepsy on anyone else, I would not trade it if I could. But that doesn’t mean that I never struggle with it.
I once heard a story about a child who was diagnosed with epilepsy, asking his father, “Will I die from this?” Although rarely voiced, I cannot pretend that it has never crossed my mind. Will I die from this?
I truly do not believe that I will. Most people do not die from seizures, and my seizures are very well-controlled anyway. The thought is often on the back of my mind, but it’s rarely something I seriously consider. However, every once in a while, epilepsy brings me face-to-face with my own mortality.
Being a frequent follower of epilepsy news, I do read an unfortunate amount of stories of people who have passed away from seizures. Every story is heartbreaking, but I seem to have become somewhat immune. Recently though, one story made me break down in tears. It was about Alyssa Josephine O’Neill (or AJO), a young woman who gained national attention after she passed away from a seizure and her family began performing random acts of kindness in her honor. I read the stories about her which were always accompanied by pictures. I look at these pictures, and I see a young girl with brown hair and brown eyes, wearing formal dresses in one picture while making funny faces from a hospital bed in another. I look at these pictures and I see me.
It’s not that we could have passed for twins; we may have the same hair and eyes yet our features are very different. But I can see myself in her. I can see the girl that’s not afraid to post pictures of herself at the hospital and chooses to joke about it instead. I can see the girl that loves getting all made up and putting on a sparkly dress. I think that’s why her story hit me so hard, despite the fact that I’ve read dozens of these stories.
I shared the story of people acting in her honor because I thought it was beautiful. I bought my pumpkin spice latte for a stranger at Starbucks and had the barista write #AJO on the cup, just like hundreds of others across the country. What I didn’t do was tell anyone that underneath my admiration for this young woman, and her friends and family who kept her soul alive, I was scared for this first time in years. Scared that one day, maybe even tomorrow, that could be me. Now, a few months later, I feel comfortable sharing that fear.
I can share my fear because over the past few months, I have learned two things about fear. The first is that it is relatively useless. I take my medicine, I try to get enough sleep…the rest is out of my hands. It is pointless to spend my time worrying about such a small possibility, when I could be out enjoying my life. In honor of those like Alyssa, the thousands of people who have lost their lives because of epilepsy, I should be living life to its fullest and making the most out of every moment.
The second thing I learned about fear? Sometimes it’s okay to have it. I never wanted to admit that I was scared, but I know now that there is a difference between having fear and being consumed by fear. When you let it take over, that’s when you stop living your life. But having some fear is nothing to be ashamed of, and it doesn’t make you weak. A little bit of fear is normal and is part of what makes us human. It’s okay to be afraid, as long as you stay away from its grasp.
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