The only experience with seizures I’d had, prior to Meghan’s journey with epilepsy, were with a friend in high school. I remember staying the night at her house and being woken up by her having a seizure. She had never told me she was epileptic and I wasn’t sure what to do! I ran to get her brother who came in and explained what was happening to me. After that I always felt like I needed to look out for her and there were a few occasions where I did have to call an ambulance and/or her mom. I never thought of her as a girl who had seizures, she was just Faith and we were pretty good friends throughout our senior year of high school. Unfortunately, after high school she decided to move to Indiana and we lost touch! Maybe meeting Faith was where my actual journey with epilepsy began or maybe it was just coincidence? I don’t know? But it’s something I ponder every now and then.
After Meghan started having seizures it was really hard to find support and often times we felt alone! Perhaps it was because there wasn’t a huge need for support in our area or maybe it was because we didn’t know where to look? I found a few online websites/forums and posted once or twice, but I didn’t feel a real connection to any of them.
It wasn’t until after I joined Twitter in 2008 and saw a tweet from Greg Grunberg about the Talk About It website that I felt some sort of connection! Maybe I was awed because he was an actor from a show I watched for a while? I’d prefer to think I was intrigued because he was a parent, much like me, the only difference being he had the audience and resources to do what I had really wanted to do for the last six years… Talk About It!
Okay! Yes yes I’ll admit I was a little star struck too! *grin*
It took a while for the website to be up and running, but I was really happy once it was! I joined and met Ken Lowenberg, a great guy who facilitated the online support group! Ken often made the group feel as though it was the heart of the foundation; including us on upcoming events and helping us break the ice and get to know each other. It really felt great being able to talk with people in real-time. Meg was even able to Skype with another young girl her age who also had epilepsy. So it was a no brainer (pun fully intended) when Ken told us about Talk About It weekend that we were all excited and wanted to participate in any way we could!
I found out the EFOF (Epilepsy Foundation of Florida), who cover my region, were going to be a part of the Talk About It weekend and after a few emails back and forth with Heather Steele Hernandez I was told we could participate in my community! It was also around this time I found out EFOF had started a support group at one of our local hospitals! When it rains it pours people! Heather hooked me up with a lady who helped run the support group and she in turn put me in touch with another lady and before I knew it we had a date to Talk About It! September 9th we would be talking about epilepsy right down the street from where I live.
When the morning of Sept. 9th came I was a little nervous! I had never participated in something like this before and I wasn’t sure how we would be received! Not to mention it had been raining most of the night and there was still a slight drizzle. When I arrived at our location Tina had already set up! So I snapped a quick picture and waited for the rest of our volunteers to arrive.
Finally we donned our sexy, little yellow jackets, armed ourselves with gobs of information, discussed our strategy and got into position.
The first person I tried to talk to brushed me off and made me feel a little anxious, but I didn’t let it prevent me from the task at hand.
My friend Lillian and I couldn’t believe within the first hour, at least ten of the people we’d talked to had either experienced or dealt with a seizure.
We were also pleasantly surprised so many people were willing to listen and really take in what we were saying!
It was amazing!
I was definitely proud of my community!
Even though it had started off a rainy day we ended up raising over $240 and giving out over 300 pieces of literature!
I can honestly tell you we don’t feel alone anymore!
There are many communities out there doing their part to raise awareness and funds for epilepsy research and with the help of social media they’re reaching more and more families!
Talkaboutit.org is one of those organizations and it has helped our family build friendships with some amazing people and for that I’m truly grateful!
A big thank you to Talk About It, The Epilepsy Foundation of Florida, Lundbeck and Publix for making this weekend possible and allowing me to be a part of it!