Annabelle...

All of us have a story to tell about our journey through life with epilepsy, and these journeys are usually documented with statements like- “I wish it wasn’t me”, or “People don’t understand epilepsy”, or “I feel so alone”. 

Someone once told me that “We cannot direct the wind, but we can adjust the sail”. I would like to share with you, the part of my journey where I was able to adjust the sails and accept that epilepsy was going to be just part of my life. 

As we all know, from the moment we are diagnosed, it feels like a cyclone has hit, the walls of our ship come tumbling in, and we are constantly drowning.  It feels impossible to keep your head above water, and a feeling of isolation, with no hands to pull you out. 

I think the turning point (and it didn’t happen in an instant, but over time) was realizing that I was not an “epileptic”. I am first and always, Annabelle, and I have epilepsy. I will not let epilepsy lead or rule my life, and I will not let others see it as my weakness. Sounds easy, but how do you get there? 

Talk, talk, talk, talk….. and for those who know me, you will know this now comes very easy. But once upon a time, I was hidden at the bottom of the ocean under a rock. 

Diagnosed as a teenager, the last thing I wanted to do was to tell anyone. But telling and talking are two very different things. So I started to crawl out from under the rock, and talk to my parents. The conversations were not so much about the epilepsy, but more about the emotion that surrounded it, and I was not the only one with all the fears. I needed to accept epilepsy, and I need the people around me to accept it as well. So how to do it? 

The Epilepsy Queensland slogan “Bring Epilepsy out of the Shadows” is so true.  It is up to me to make sure my environment is safe and comfortable, so I don’t feel afraid. I need to talk to my friend and work colleagues and explain to them what they need to do, and reassure them that they can be strong and help me if and when I need them. It is important to be comfortable in listening to their concerns, and giving them information that is easy to understand, and all they need to know in case you should have a seizure while at work. 

Don’t make epilepsy the focus of your life. Don’t lose sight of all the positive attributes that you have, and make sure people know this. You are not “an epileptic”. You are a unique person who just happens to have epilepsy. 

You can sail a strong ship, but it’s up to you to steer the sail and create the environment that makes you comfortable. Talk, communicate, discuss, and you will find a strong crew who will support you on your journey. It won’t always be smooth sailing, and I have had some cyclones in my time, but there are some tropical islands that I share with great friends and family around me. And always remember the positive, over the negative.

Happy sailing-

Belle