Hi, I’m Cassidy, I am thirty one, and being a girl is not easy. “Does he like me?” Would I rather have a chicken breast or a little debbie oatmeal creme filled cookie?” “ How is it that my mom was right and this dress does make my ankles look fat?” “Is two cats when it gets weird?”. Being a girl with epilepsy is even harder! “ Did I take my meds this morning?” “ Is it weird that this guy thinks my simple- partial shoulder twitch is me flirting with him?” “ Am I the only one that feels alone and left behind?” To all of the questions the answer is NO. It is hard to feel like you can take control when you have a disease that decides what and when it wants your body to do something. I have had epilepsy for sixteen years and along this journey I have learned some tips that I would like to share with you.
My blog is intended for girls that have epilepsy that still want to manage a full life while having a disability. I’ve always had to figure out things the hard way. Since I’ve done so many things the wrong way, to learn how to do them the right way I want to share with you my missteps in hopes you may avoid them. I either take too much medication or not enough. I either walk away from a guy when he asks me out or I come on too strong. Being sensible was a very weird place for me. I have learned though, and I want to help others. No epileptic left behind!
I want to answer the questions your doctor can’t. “ How do I make an EEG cap look glamorous?” Well, that’s a little bit of a challenge, but Elizabeth Taylor made a tracheotomy look good so anything is possible. FYI, there are always single residence around a hospital, so a little contouring, spanxs, and fake eyelashes never hurt anyone. “ How do I look fabulous on a fixed income?” There are so many cute boutiques, consignment stores, and thrift stores where you can put together amazing looks. You may be having twitches in your legs, and people will be saying, “Wow, where did she get those pants…she looks amazing!” “ How do I date with epilepsy?” That is a great question! I have not mastered dating yet if I’m being honest, but I do have some advice. I would say put yourself out there and practice, practice, practice! You are going to make mistakes and say the wrong things so, find out what you like while you’re doing that.
What is my story? My story begins when I was eight and I had a grand-mal seizure, and then I had another when I was ten. Since my doctor thought that I had just fainted I wasn’t diagnosed until later. It was when I was about fifteen that I started having simple-partial seizures in my sleep. I had a week stay at CHOC Hospital and a number of test to leave with no answer. I continued the next two years going on and off large amounts of neuro medications and doing all kinds of tests to have doctors politely look down at me and tell me stress can cause unwanted jerks. I finally went to a doctor when I was seventeen who diagnosed it as epilepsy, and put me on some medications that seemed to control the seizures well enough. However, my simple partials were never really completely managed. I just learned how to live with them, and I didn’t do the greatest job. I took way longer to get through school, and I lost a number of jobs because I called in sick or I would be having twitching at work. Then, out of the blue about three years ago I had another grand-mal. The seizure, and the testing that followed, felt like the worse thing that could’ve happen but, it was actually a blessing. I was brought to an epileptologist not just a neurologist, and I was retested to see where the seizures were happening in my brain. I have seizures everywhere, so I have to be stabilized with medication not surgery. It has taken me a long time to be comfortable having epilepsy and it’s taken even longer to talk about it. Sometimes your weakness makes you stronger, and I think I have definitely learned so much and gained so much strength from having this disability.
I feel like I wasted so much valuable time being ashamed of my epilepsy, and I want other girls to embrace it and work around some of the dilemmas that come with it. In this blog I am going to give tips and resources I have used to help me with the hardships that we do face. I know I had an awful time with medication and my skin. I had terrible breakouts and weird swelling. Well, now I know a great mask for breakouts, and I know how to do makeup to make your face look thinner. My hope is that you may learn independence, strength, and courage in the face of this debilitating disease.