Epilepsy Blog Relay: On Accepting Epilepsy

This story is part of the Epilepsy Blog Relay™.

Jillian’s Story

I had my first tonic-clonic seizure on July 27, 2012. I was 20 years old; perfectly healthy, getting ready to start my senior year of college and turn the big 21 in just a couple weeks. After MRI’s, EEG’s and meeting with a local neurologist, I was told I had abnormal brain waves and would now be considered epileptic. I was put on medication and that was that. I had almost forgotten about the bizarre occurrence when I had my second tonic-clonic seizure nearly two years later on May 24, 2014. For the past two years now I have experienced about one to three per month.

When I first began my journey through Epilepsy, I refused to consider myself epileptic. After all, there were people working through far worse cases of this complicated neurological disorder. I felt guilty telling people that I was epileptic. I felt like I was just looking for their pity and compassion. That I was just whining and serving as an annoyance if I talked about it since I didn’t seize every day and I was otherwise healthy. But no- One seizure is too many. We need to talk about it. There needs to be awareness.

Accepting epilepsy

The day I finally accepted Epilepsy as a part of my everyday life is when I finally felt the slightest (key word: slightest) bit of control and ownership over this maddening new obstacle in my life. I may not have a seizure every day, but I do wake up every morning with the same fear and the same hope. I do resort to cabs and friends to drive me where I need to go. I do swallow an increasingly large handful of anticonvulsant medications two times a day. I do endure the side effects these drugs bring with them. With acceptance comes peace. With peace comes strength to take control of your life no matter the obstacle.

Don’t miss tomorrow’s story in the Epilepsy Blog Relay™.

Jessica K. Smith Founder and CEO; Executive Director

Jessica Keenan Smith is a patient advocate and epilepsy community leader with more than 15 years of experience. As Founder and CEO of Living Well With Epilepsy and Executive Director of ASENT she bridges the gap between the scientific and patient communities, with a particular focus on the needs of the epilepsies. Jessica Keenan Smith is Founder and CEO of Living Well With Epilepsy, an award winning online resource for people affected by epilepsy to share stories and access in-depth information on the disease. Since 2009, Living Well With Epilepsy (https://livingwellwithepilepsy.com) has been featured in Forbes, Wired, NBC, NPR and the cover story of Epilepsy Advocate Magazine and has partnered with companies such as UCB, Lundbeck, Sunovion, Eisai, and more. Ms. Smith is also the Executive Director of the American Society for Experimental Neurotherapeutics (ASENT) (https://asent.org), an organization that brings together leaders from industry, academia, government and advocacy who are engaged in bringing drugs and devices to market across all neurologic disease states. In this role she is responsible for leading a successful scientific journal and annual scientific conference with speakers from all over the world.

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Epilepsy