Why Epilepsy? My Journey to Advocacy

For if you remain silent at this time, relief and deliverance for the Jews will arise from another place, but you and your father’s family will perish. And who knows but that you have come to your royal position for such a time as this?” (‭Esther‬ ‭4‬:‭14‬ NIV)

Oh-Em-Gee!!! 2015 has started out to be an amazing year of change. With change comes a lot of questions. I have had the opportunity to meet some amazing, yet influential, people in just the first 4 weeks of the new year! But with every 30 minute conversation, the main question has been “Why Epilepsy?” Why do you advocate for Epilepsy? Why are you so passionate about this cause? See I can talk about anything under the sun but you bring up seizures, bring up Changing Focus, mention Epilepsy Awareness and there’s this fire you ignite inside of me and its very hard to put out once I get started. Just ask anyone who stepped into that territory.

Living with epilepsy my entire life, has made me very aware of the ups and downs, the highs and lows of what some may experience. I’m no doctor but I do know what I personally experience. From the dreaded doctors visits to the crippling migraines to the actual seizures themselves. I have not always been this in to Seizure Awareness. I can’t sit here and lie to any of you. I have always kept my blogs and social media pages open and honest with you. I will always continue to be that way because I want to be 100% Whit on here and when you see me at the Walks or speaking somewhere or any event I may be volunteering at.

Where I come from, you rarely hear people talk about seizures. In the words of a fellow advocate “Seizures aren’t cute and cuddly”. So it’s often swept under the rug and silenced. Growing up, there were not many support groups or outlets to turn to for information you needed or to just vent or learn more about your condition. Yes, as a child your caregivers are there, growing older you have the support of family and friends but sometimes it’s just not enough. Having someone who REALLY knows what you are going through really adds something extra. People who knows how it feels to lay on the floor not having any control over your body, who knows that it’s just not “an out-of-body experience”, who understands the looks you get if it happens in public. The laughs, the stares, the jokes, the movies, tv shows, all centered around “seizure like” moves. I was silenced for so long because of it all. Silenced because I was afraid to let people who knew me as the fun-loving, always smiling, making others happy Whit, was always at war with her brain, and I too would be the one laughed at.

I was ignorant also. When people made jokes about those of us with seizure disorders, I just sat there, smiled and acted like it did not bother me. Ashamed to say hey that’s me you are laughing at you know. I can say hey it’s because my last grand mal seizure was when I was a kid. Knowing I still fell into the epilepsy category. But see something changed. When my seizures returned at 27 years old, God wasn’t placing them back in my life to cripple me. He was doing it to show me, I was made for more. He had a plan and purpose that was placed on my life long ago. Now was the time to ignite it.

I prayed for guidance for such a big task, to advocate. I was led to the book of Esther. Women in the bible are so over looked sometimes but Esther. Oh I want to be a modern-day Esther. She did not grow up with the perfect background, neither did I. But she was chosen to be queen. She had favor, she was blessed and never expected her life to turn out the way it did. For a long time she had to hide her identity as a Jew to prevent losing her life while serving as Queen. It was against the “norm” to be a Jew in the palace in their time. But she indeed was covered by the hand of God. After fasting and praying she had to make a decision to stay silent and hide the fact she was a Jew or save her people and stand up for them. Be the voice and use the gift she was given. If she did not do it then the opportunity would be given to someone else. SILENCE WAS NOT AN OPTION FOR HER. It will no longer be one for me.

So I pray for favor like Esther, I need your strength to handle the pressure. I know there will be sacrifice, but that’s the price. It’s never easy to be chosen, it’s never easy to be called -Katy Perry..

I also found my voice. I am no longer that shy, timid child that allows people to walk all over her. I can no longer allow people who do not understand epilepsy say “lets not talk about that” or people with that are weird or its funny to see them shake. I no longer let people do and say things to hurt me and just “brush it under the rug”. I chose Epilepsy because IT IS MY LIFE. It is the lives of 65 million world-wide. It has no race, no gender, no age. It can happen to anyone. You don’t need to have it in your DNA. It selects people at random. So don’t think “it can’t and won’t happen to me.” I pray every day it does not. Join me and all other advocates in the fight. From now on I will never be silenced again. This is my life’s work. To advocate, to educate and to be the voice for Epilepsy that I was born to be. For such a time as this. Be heard and speak up for what you believe in, no matter the cause.

With Love,
Whit

cf.epilepsy@gmail.com

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