What is the Every-Man? Does the Every-Man work eight to five, make car payments, be the stay at home parent, work odd hours, or go to school? The Every-Man is as hard to determine, maybe as hard as it is to define normal. Are you an Every-Man? How about the people you connect and interact with? Are they? I have always thought I was an Every-Man -- just a normal person with normal friends and a normal family. Recently the idea that I was an Every-Man was brought into question. My world was altered. My emotions and perception were as well.
I came to a point in my life where I was learning and networking in the social media world with a close friend. He taught me about epilepsy, and it began to resonate with me. The lack of awareness and the stigma around epilepsy are wrong. I wanted to help.
I began blogging for TalkAboutIt.org to grow awareness for epilepsy. My first blog about the merger of the Epilepsy Foundation and the Epilepsy Therapy Project got a lot of attention from friends on Twitter and Facebook. This blog was seen by one of my friends who I have known since middle school. She contacted me to say she lives with epilepsy. For all these years I had no idea. My Every-Man view of myself vanished.
Soon after, we met for dinner and she told me her story. When her seizures first started happening her family was confused, unsure, and frustrated by her epilepsy. Some members of her family would even get upset at her; they just didn’t understand. Her friends, also lacking understanding, would leave her behind if she was feeling pain or having trouble with her epilepsy. She told me at one point when things got really bad she was in and out of the hospital, her boyfriend of four years left her all because he didn’t understand. This lack of understanding by those around her made her life difficult. It made me realize how important it is for people to be aware and to understand epilepsy.
We talked about how many other people live with epilepsy -- a community out there for her to build connections. She was amazed to find out just how many people live with epilepsy, especially that there are 32,000 in Orange County alone. She said her doctor had always told her that other people live with epilepsy -- but never how many and how geographically close to her. I asked her if her doctor has ever told her about TalkAboutIt.org, the Epilepsy Foundation or the Epilepsy Therapy Project. She said no. I wondered what doctors are talking about to people who live with epilepsy. Do the doctors know about all treatment options? Do they know about these organizations?
After meeting my friend and hearing her story, I became more and more frustrated with the lack of awareness and the stigma that surrounds epilepsy. I decided then that epilepsy awareness was not going to be the smaller battle I envisioned when I started this blog. I have decided to declare war on the stigma and spread awareness wherever I go. I look forward to starting my war on the stigma this November for National Epilepsy Awareness Month.
We must do this together -- for my friend, for any of your friends who still may be afraid to talk about their epilepsy, for the millions of Americans who live with epilepsy every day. Join me. Join the fight. Stay tuned and remember to talk about it!