“It is in times of solitude that God refuels us and we can hear His voice.”
Always. Always, I’d seen myself with a spirit of independence. Setting out bravely on my own, with my head held high and a smile shining bright upon my face, reaching for the sky as I took on the world, chasing after dreams and living life to the fullest. I hadn’t a care in the world. I hadn’t nothing to fear. All of this was prior to Epilepsy knocking upon my door in 2008. When Epilepsy entered into my life, my entire world rotated upside down. I was a newlywed of just 4 months. Married to the love of my life. I watched as friends I thought were lifelong, faded like a waking dream. Watched as things I once could do so simply, became chained and locked away from my grasp so-to-speak. Having to learn a new way of living life for as long as I should have Epilepsy. At the time, it was as if a meteorologist walked into the room and reported to me solely to ‘prepare for a storm for a very long time’ and walked out as I let the reality sink in of the domino effect happening in my life.
I became determined that I would learn about this condition that I would be living with, if indeed we were going to be with each other for a lifetime then. If my brain and Epilepsy were going to be room-mates, then at least I better get to know it well enough to work around it. To learn to live life to the fullest once again and not allow it to overcome me. And so, that is exactly what I did. I began to devote my life to understanding epilepsy. Advocating for epilepsy and educating others living with epilepsy just like myself through my organization The Epilepsy Network (TEN).
Over the course of time, over the years of living with daily seizures, I’d realized that there are quite a few things that I cannot or should not do in order to prevent seizure activity or danger of harm. Things that I have learned to come to terms with. Things that I’ve found peace with. When I was diagnosed with epilepsy in December 2008, I happened to be behind the wheel of my car. In my previous blog (http://tiffanykairos.com/jesus-took-the-wheel/), I was blessed to have survived suffering a grand mal seizure behind the wheel. Doctors and Police Officials chose not to take away my drivers licence which they could have done legally, but I have chosen for my safety and the safety of others NOT to get behind the wheel on my own, alone, since that very day. It’s not an easy task to get to where I need to go on my own. Sometimes, I can find it a little difficult on a multitude of levels to ask for rides to and from places in order to accomplish the things one must do as a grown adult. Especially as a housewife, when on the inside you feel that you are fully capable of taking yourself places, however its your brain posing a threat to your safety and the safety of others. The loss of the ability to drive is just one of the things I have learned to come to terms with. I’ve rediscovered the love for walking and biking since no longer driving. It’s amazing what you discover when you choose to look on the brighter side of things.
In wanting to hold onto independence yet knowing the capabilities of Epilepsy, it was almost as if I had become a tight-rope walker. An independent-dependent person. I strived to hold onto my independence as much as I could, and continue to, to the best of my ability on a daily basis, all the while, knowing my limits and knowing when to ask for help and accept help from friends and family. Learning to accept help with things that I had been doing for so long, was something that took quite a while to adjust to when my diagnosis came into play. I often turned helped away, turned my family away when they offered to lend me a hand, but in the back of my mind I truly didn’t want to be left alone. Fearful of seizing alone. Fearful of the unknown. The idea of being afraid of being alone, I didn’t like that. Not at all. It wasn’t who I was. It was never who I was. I wasn’t about to let Epilepsy make me afraid. Period.
Now, in my almost 6th year of living with Epilepsy, I have embraced this ‘Brain-Roommate’ if you will, completely. Epilepsy is here to stay with me for a good while and I plan to make the best of it. I plan to make the best of my life. Whatever I can’t do, I plan to work around it and seek after all things positive and inspirational instead. I have long decided to face the fear of ALONE. To take back my independent spirit and embrace life for all its worth. In the beginning of my journey with epilepsy, I feared seizing alone. I no longer fear seizing wherever I may be, because wherever I go, I talk about epilepsy as often as I have the opportunity. I talk about my experience. I talk about seizure first aid. Epilepsy Awareness. Whatever I can do to help people better understand. I let the words flow and I break down the fear so I no longer fear ever a situation of standing alone.
I encourage all of you reading this to do the very same if you too feel the very same that I had. Don’t let epilepsy fill you with fear. Don’t let epilepsy hold you back. Don’t let epilepsy shut you in. Don’t let Epilepsy close you down. Fill Epilepsy with fear instead that you will rise above. Hold epilepsy back! Shut epilepsy in. Close epilepsy down. Beat it back and win! This is your life.
I am a happily-ever-after wife, an Epilepsy Diagnosee, Advocate for Epilepsy Awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!