You’ve tried the new medications…you’ve braved the Ketogenic Diet…you’ve even had the VNS (Vagus Nerve Stimulator) implanted…hey, you are even one of the lucky ones and you’ve been a candidate for epilepsy surgery. Still, you are not seizure-free. NOTHING worked.

A personal note…I was one of those people who was a surgical candidate in February of ’09, and let me tell you, I was determined that surgery was the answer. I was adamant that surgery was going to work (and this was my second try). I had my new car picked out (it was beautiful); I told myself I wasn’t going to need any rehabilitation or therapy because I had gone through this previously so I could coach myself back to a healthy state (I was a pro at this, after all). I could picture life without medication side-effects…no weight gain, moodiness, cognitive issues, memory loss, you name it. I was so convinced that I could be seizure-free and frankly ‘normal’ again…that when my doctors walked into my hospital room in the EMU (Epilepsy Monitoring Unit) at Harper Hospital that day and told me “NO” to surgery, I was so completely devastated, my husband couldn’t leave my side for fear I would wrap those EEG wires around my neck and strangle myself.

But I rebounded as we all must. It takes strength and acceptance to live the way we do, and a heck of a lot of courage. A wise woman who has Epilepsy once taught me a really great strategy. Each time she has a seizure, large or small…as soon as she comes out of it, she ‘tests’ herself. She recites the alphabet. ABCDEFGHIJ….and so on. She begins slowly, pushing her mind, until she can rapidly rip through the letters. And, when she makes it to the end, she knows she is ‘back’.

So what now? How do you settle in and live life with epilepsy? I once was told we should not be called Epileptics, so I shudder each time I hear someone say the word. We live with Epilepsy. We have seizures. That’s how we must define our life.

Our way of life is different than most, but it doesn’t mean we should give up on happiness just because we must live with seizures.

Oh, and by the way…I never did get the car. But, I did get the VNS (Vagus Nerve Stimulator) –and 5 months of rehab and therapy!