Epilepsy Diagnosis in One Word: Fear

Fear. Such a scary word to understand, let alone speak of. As a writer, we face fear each and every time we write. Fearing judgment of those who read our writings. Are we being impactful? Making a difference?

You quickly learn that facing fears head-on is actually a gift, a gift of freedom, and even more so a gift of unintentionally positively impacting others. I learned to face my fears long, long ago as a surviving mechanism. Easy peezy. Well???? That was until I was diagnosed with epilepsy at the age 50.

I couldn't believe my diagnosis

Say what??? Epilepsy??? "What do you mean, I have – and have had – epilepsy my entire life? How is this even possible?" I asked the doctor. "I’m 50!" Ooooh, and by the way, "What the hell is epilepsy?" I asked. "Are you sure...?" Challenging every word/sentence he had to say.

I will never forget the day that my phone rang. I had a very icky feeling about taking this call knowing it was my neurologist. I mean really? How many doctors call you within hours of extensive testing of the brain?

After the 5th ring, I held my breath, pulled over, and my life forever changed. I was told I have epilepsy. I cried. I felt very scared, alone, not knowing what my next move would be. I felt as though my who world came crashing down.

We fear the unknown with epilepsy

I never felt so alone, even though I have the most amazing friends, there was still a sense of loneliness that no one could understand. Well... With the exception of the time I was in jail for 8 hours on false allegations (but we’ll save that for a future blog).

We all face challenges in life and truly the hardest thing we will ever learn is learning what and how we handle those challenges. The unexpected. The unwanted adversities.

Fast forward, a few weeks in, I had to become my biggest self-advocate, as I fired my first two neurologists and created my own managed care that my now amazing neurologist supports. It is so incredibly easy to give in to life’s circumstances and become a victim. Sooooo easy! I call it the easy way out. Not facing your fears head-on.

Post-diagnosis: from fearing to fighting

Epilepsy has forever changed me, my life, and more importantly my mental health. Yes, epilepsy has positively impacted my life. How? Because of what I have chosen to do with my diagnosis.

I have had to make major life changes and I struggle daily with fighting this ugly, incurable disease. I often hear, "You don’t look like you have epilepsy!" "You don’t act like you have epilepsy!"

This comment makes me want to advocate even harder for those who suffer from epilepsy. "What does epilepsy look like?" is always my first response. "How am I supposed to act?" Epilepsy, I can assure you, is NOT what you think, it is so much more than convulsions. SO MUCH MORE!

Epilepsy is a silent battle

It is a silent battle that many of us fight each and every day, hoping and praying that we don’t feel embarrassed or humiliated by unexplained, unaware behaviors. Our brain kicks into high gear and decides our behavior for us.

Yikes, as if that wouldn’t scare others from wanting to associate with you, right? Yes, it takes special, non-judgmental individuals to be a part of our lives, when at times, our brain decides our behavior.

I am fortunate and there isn’t a day that goes by that I am not grateful that I can manage this ugly disease when so many cannot.

I'm grateful for my epilepsy

Medication doesn’t always work for others, finding the right medication for one's body chemistry is another struggle that many battle. I am grateful, I am blessed to have epilepsy. Yes! You are hearing me correctly, I am grateful and I am blessed.

God gave me this gift so that I can manage it enough, experience the challenges daily, but yet, just enough so that I can be the voice of so many who have lost theirs. To give hope and strength to those who are ashamed and live in the silence of having epilepsy. That we are not less than, we are more, because we fight a silent battle that many do not (nor choose) to understand.