The Hardest Question I Get Asked When I Talk About My Epilepsy

When the going gets good and the positivity starts flowing, I start to think about setbacks and the lovely L-word: limitations.

Trust me, I’m the world’s most positive person, so this isn’t a negative thing. This is a realistic thing. And for a person who lives in a world full of fairytales and magic most of the time, being realistic is a good thing.

Other relevant stories:
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When I’m educating about epilepsy, one of the hardest questions I get is, “What are your limitations with your epilepsy?”

It shouldn’t be a hard question to answer. Naturally, limitations exist. I can’t drink alcohol. I need to get a certain amount of sleep. I should avoid stress as much as possible. I shouldn’t do extreme sports. I have to be careful with strobe lights. There are others. But the problem with that question is it’s emotionally hard because no matter what, I always feel a little defensive. I want to believe that I have no limitations.

That feeling goes back to my second public seizure during my senior year of high school. I had it on the football field at my homecoming game while I was cheerleading. The response was overwhelmingly positive and helpful, but so many people were misinformed, and I heard a lot of rumors that I wasn’t going to be able to cheer anymore or go to college now that I was officially diagnosed with epilepsy.

Instead of getting angry and lashing out, I made it a mission to show how my epilepsy wasn’t going to stop me from accomplishing my goals. I was going to do everything they were saying I couldn’t do and more. I set high expectations on myself. I had a lot to prove. I wanted to show I had no limitations.

That wasn’t realistic.

It took a long time to realize that limitations are how we stay healthy, how we stay sane, how we stay balanced. The L-word shouldn’t be a negative thing; it should be something we almost celebrate because we’re choosing to live the best life for ourselves instead of pushing unnecessary boundaries.

But I do want to mention some limitations I put on myself after my seizures that aren’t super healthy. I haven’t returned to the “seizure sites” since I had them. I haven’t been back to that football field. I haven’t been back to my college since graduation. I just felt these were stressors I couldn’t handle. Even this year, I thought I was going to go to the homecoming football game but found excuses: housework to do (seriously), a wedding shower, my husband’s own class reunion… that gave me an out. But next year will be 20 years since that seizure, and I’m setting a goal to make it back. I will limit myself no more.

Do you have good and bad limitations in your life?

Follow this journey on Step Up for Epilepsy Awareness.