Living with Epilepsy…and Living in Fear

He who fears to suffer, suffers from fear. French Proverb

Fear is such a huge part of living life with Epilepsy…at least it is for me.

I live in constant fear of when the next seizure will strike; where I’ll be when it does strike and who will be with me. I’m not always public with my fears, but they are incredibly distracting and controlling. Many times, it’s so easy to keep them bottled up. And, because I have fears, it’s easy for me to shelter myself…to stay away from activities that I used to enjoy prior to my diagnosis in 2003. I also use my fear as an excuse. What if I’m with people who don’t understand seizures? What if no one knows what to do? What if they are so uncomfortable, they decide to leave me there, mid-seizure, to suffer?

Don’t get me wrong…I wasn’t one who liked to cliff-dive or swim with the sharks. I was no daredevil, but I was active, and skiing was something I thoroughly enjoyed.

So, in March of 2009 when I had my VNS implanted, I put away my skis. It sounds crazy, but I was petrified that someone would run into me on the slopes and wreak havoc on my neck. Or, I would fall and something disastrous would happen to the device. I know, I know…ridiculous; but I convinced myself that ‘I couldn’t ski’ because of my health.

Not true, and I knew it. I created the situation in my head and it constantly nagged at me.

So, this week as I continued to watch Hayden progress on the slopes (she’s gotten SO good!), she continued to beg me to take my skis out of storage. I knew my husband was also eager for me to get back in the game. So, they left me no choice. Andrew had an idea.

On Thursday, I dressed, put my helmet on and snapped on my skis. “I have a perfect plan,” he said. “Just follow me.”

So, at 11:00 am, he introduced me to “Doug”, my ski instructor. He had booked a 2-hour lesson for me with someone who had deep experience and determination.

I shook Doug’s hand and began to rattle off the reasons why I hadn’t skied in almost 2 years. I barely gave him a chance to speak. I gave him my whole schpiel…the down and dirty reasons, from the seizures to the surgeries, as to why I ‘couldn’t’ ski. And when I finished, he took my poles, leaned them up against the brick wall of the lodge along with his, and smiled.”Let’s go,” he said, as we jumped into the chairlift line.

“Don’t fear your fear,” Doug said to me on the lift. “If it’s something you want to do, make it happen.”

So, in 120 minutes, on that sunny slope in Northern Michigan, Doug wasn’t re-teaching a woman with Epilepsy how to ski, he was helping someone who had taken ‘a break’, brush up on her skills. “Do you think for a second, that if you have an incident on these slopes, that no one would come to your aid?” Doug asked. Made sense to me. “You can’t succeed if you don’t forget your fears.”

By the end of the day, my 5-year-old was making plans for a grand ski trip with Mommy and Daddy. And, I was forever grateful to someone who frankly knew very little about Epilepsy, and didn’t have to. He was a pro at helping people conquer fear.