Spreading Awareness Through Sharing My Story

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Jennifer is sharing her eJourney to spread awareness about epilepsy

By Jennifer Thul

Person with Epilepsy

My epilepsy journey is not one I chose or one I could have ever imagined, but it is the path that was chosen for me. Epilepsy is like a shadow, it follows me everywhere, and although I don't always see it, it's always there.

It was a typical February day in 2018 when my journey with epilepsy began. A couple of hours into the morning, I started feeling off. It's hard to describe exactly how I felt, but I didn't feel myself. As I came to find out, my body was warning me about what was to come. I experienced what is commonly known to people with epilepsy as an aura. I felt lightheaded, had a tingling or numbing feeling across my forehead, and felt off balance. It wasn't easy to focus. These symptoms went on for a couple of hours, but I didn't listen to my body and dismissed it as clumsiness. 

As time passed, the symptoms intensified. Around noon, I went to grab lunch, and before I could bring it back to my desk, I dropped my food. I couldn't hold onto anything without dropping it. Still, I rationalized it as nothing serious. However, working in the healthcare industry, I'm fortunate to work around medical professionals. Two friends I worked with saw I wasn't myself, pulled me aside, and insisted on walking me down to the doctor's office, and seeing their worried looks alarmed me, so I agreed to go with them.  

It is a good thing I did, as I was minutes away from going into a full seizure. Once I was rushed in to see the doctor, I was asked several questions, such as "What is your name? Do you know where you are?" I was blank and couldn't answer who I was or formulate words. Shortly after, I began to have a tonic-clonic seizure and became unconscious. 

I was disoriented and panicked when I came to, not knowing what had happened. After being transported to the hospital and going through many tests, I was diagnosed with generalized epilepsy. I somewhat knew what a seizure was, but I had no idea what epilepsy was. Following my initial seizure, I had tongue lacerations, dislocated my shoulder, and a torn rotator cuff, which resulted in surgery.  

During my journey, I have learned that you never know how strong you are until being strong is your only choice. Although I am very fortunate that I respond to seizure medications, it comes at a price. Often, I struggle with short-term memory loss, confusion, and severe insomnia. It is hard to focus on other challenges. If I miss one dose of my medications, it is a guarantee that I will have a tonic-clonic seizure. 

There is no explanation for my epilepsy, but I truly believe everything happens for a reason. In my case, maybe that reason is to help spread awareness through sharing my story. It is never an easy road, but small victories are often the biggest ones. Every day I choose to celebrate the incredible blessing of a seizure-free day. 

Reviewed By: Sara Wyen

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