In the year of 1993, that’s when it all started. The beginning of Epilepsy. My father told me not too long ago that I had my very first seizure with him while we were both watching television. I can just imagine how he felt at that time. Scared. Frightened. Frantic. All of the above. My seizures, then, were described as staring spells. At times, my eyelids would flutter quickly. I would not respond to anything that anyone said to me. That’s the way it was when I was 2 years old. There was no forced turning of the head to the right, flashing lights in the right eye, unexplained anxiety or fear, tingling sensation in the stomach, rubbing fingers together, or shaking the head back and forth like it is now. Things have changed drastically over 20 years.
I guess my parents had a slight feeling that something wasn’t right with their little girl and took me to go see a pediatric neurologist. I don’t remember him too much. I only have vague memories of him. He was very nice to me. I was on medication after medication. First, I was on Tegretol. Then, I was taking Carbatrol. With this medication, I wasn’t able to swallow the pills whole yet. So, my mother had to give it to me by twisting and turning the pills and putting it on a spoonful of applesauce. YUMMY!!!! It was much easier then until I began to do it myself. I made a total mess of it. The medication would be all over the kitchen counter. It was like a little kid did it. The only way I knew how to fix my medication each day and night was to put the applesauce onto the spoon and then twist the pill open with my mouth (Since I can only use my left hand). I did not want anyone else trying to do it for me. At that time, I was a teenager trying to establish a sense of independence.
When I moved to Chicago, my neurologist mainly focused on why I had an in- utero stroke. He took the focus off of my Epilepsy and took me off of my medication. This is how the seizures that I am now experiencing started. Every time my neurologist takes me off of my medication, I end up seizing for no reason. So they ended up putting me back on my anti- seizure medication again. I found a note that my neurologist in Chicago wrote to my doctor stating that I have Complex Partial Seizures. Why the heck was I thinking that I had Absence Seizures but those happen multiple times per day. “Naw. Those aren’t the type that I have. That can’t be it. The doctor is right.”
Starting my adult years in Cleveland, Ohio, I was still taking Carbatrol twice a day. One day, my neurologist told me that he will be changing my Carbatrol to the generic form, Carbamazepine. “Hmm. Okay. Whatever you say, doctor. I’m going to do it.” Then February 2011 came, I was also placed on Keppra twice a day on the lowest dose possible. Over time, the Carbamazepine and Keppra were increased but nothing had worked to control my seizures. I am in this predicament where surgery is a possible route to control my seizures. As of right now, I have been three weeks and three days seizure free. Yesterday, I had an unexplained fear of anxiety. That’s the usual start of my seizures but I’m not going to worry too much. I will try to have a positive mindset throughout it all.
This is me at 2 years old. I look so innocent, sweet, and adorable.
It looks like I want to dance. I was a very vivacious child. But to tell you the truth, I love myself then, and I love myself now. I am going to pursue my dreams in life.
Cerebral Palsy and Epilepsy doesn’t slow me down. They build me up!
ELIAES (Express, Love, Include, Advocate, Educate, and Support)