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.
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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?
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Brigid wears many hats, including teacher, mom, blogger and Epilepsy Ambassador for The Anita Kaufmann Foundation. Diagnosed with epilepsy at age 17, she has since made it her mission to remove the stigma attached to the condition through enthusiasm and education. This year, her initiative includes walking 2,015 miles in 2015 to raise awareness for the cause – follow her in every step on her blog at www.stepupforepilepsy.blogspot.com.
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