The power of a word, the power of an illness is something few in our society understand first hand.
As I live each day my goal and very strong feeling is I AM NOT EMBARRASSED. If I was embarrassed I would go NO WHERE except doctor appointments. I go to BBQs, dinner, shopping, birthday parties, grocery shopping, pedicure with a friend, kids events and so much more. I only miss if I am at a doctor appointment OR I am literally incoherent after an event. Give me 40-60 minutes and I am there! Sometimes I maybe feel unsure or uncomfortable - what if I have a seizure here. This maybe a year old but there are events where it still is new. I take a minute maybe discuss it with someone with me and then just move on.
Everyone doesn't feel like I do. Some people are absolutely amazing and don't seem to be phased a bit. There is another group that is honest straight up and says OK explain this too me, ask questions and learn the process. The last group comes across as terrified- either straight up to my face or round about.
I have spent years doing things to show others that I am not "normal". I have had various piercings, I have gotten tattoos, worn my hair different. My clothes are rarely the typical runway fashions that year. I have never had much trouble speaking out for my beliefs- popular or not. All things that put you in a "different" group.
My newest group and label EPILEPSY has brought out emotions and fear from people that somewhat surprises me. I know it's scary. I have said Epilepsy was one of my greatest fears. After the past two weeks I feel like a Monster. A real life tried and true monster. Before you feel bad, stop. I would be lying if I said I liked it- BUT what do you think is an underlying message of the tattoo culture, pinup world, especially the fame and fortune of vampire and werewolf books - even the summer hit Shades of Grey. All the listed are things I admit to love and enjoy. All include monsters, freaks, weirdos, whatever.
I have a list of tattoos I have really wanted badly. I have dreamed of one for years. I haven't understood and actually quickly disliked its popularity so I dimissed it. It's a sugar skull. Their meaning had no obvious connection to me. After the past year/week or so, I looked at a hand painted sugar skull I received as a gift from Brett many years ago. The vision I have had of the skull, flowers, anger, happiness and health I realized is my visual of epilepsy. The image I have seen for years, talked about. I didn't understand it and refused to use the image until she meant something and spoke to me. She is terrifying to the undiscerning eye yet when you look deeper yes there is torment (illness) shrouded in wonderful beauty (love, friendship, kindness and wisdom).
We miss out on so many things watching our own thunderstorms and basking in our own glory. Don't wait to find out what your Monster is- love it, embrace and make her your beautiful. Those important will embrace her no matter how scary she is because her strength will shine through.
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