Epilepsy: Only A Part of Me
written by Tiffany Kairos, founder of The Epilepsy Network
I believe that we as humans are MORE than merely living breathing human beings. We are more than just what the eyes can see. I’ve always said that the most interesting stories are not bound in pages, on shelves, or written in ink. The most interesting stories are written on our lips, spoken with our voices, harbored in our hearts and souls. All of us, human beings hold chapters and verses. Heartaches and pains. Beautiful moments and unforgettable memories. Talents and gifts. We are walking talking books and treasure troves. Taking the time to experience just how incredible and deep a person is, is just one of the greatest aspects to life in my opinion. Not money, not materialistic things, no. How often do you take the time to really get to know someone? Take a walk in their shoes and see where they’ve gone or where they’re going? How often do you share your walk? Tell of where you’ve been and where you’re headed? How often are you really truly heard?
When I was diagnosed with Epilepsy, alongside many different thoughts soaring through my mind, FEAR was a prominent thought. Fear that everyone would no longer be interested in who I am but what my diagnosis is. That the word EPILEPSY would be written in big red letters across my face casting a deep grey shadow over myself and that’s all that anyone would ever see and all that they would need to know to determine whether or not I was worthy. Worthy of much else in life, worthy of their time, worthy of their friendship etc. In some instances, my Epilepsy diagnosis did in fact stand big and tall before certain eyes. I, unable to be seen. Unable to be heard. Unable to be given chances. Unable to describe who I am a part from Epilepsy. That even though I have Epilepsy, it doesn’t strip me of my intelligence, strength, ambition, hope, faith, work ability, entire independence etc.
Thankfully, not everyone allowed my diagnosis to stand in the way. How many of you with Epilepsy want to be known for who you are as an individual and not just your diagnosis? How many of you want it to be known that yes it is a condition that you have but that the condition doesn’t have you? This is how I feel. For some onlookers, its easy for them to see past the word EPILEPSY. For other onlookers, its too big, tall, and confusing of a word for them to see past. Too ‘odd’ a thing to understand causing them to turn the other way and walk on out of the picture.
So, who am I when I push EPILEPSY to the side for a moment and take center stage? Firstly, I am a child of God. I am a daughter, a sister, a wife (Celebrating 7 years this past August), a friend and a fur-mother to two adorable cats: Jaycee and Paisley. Family is everything to me. They are the beat of my heart and the flame in my soul. When I was diagnosed with Epilepsy, they held me up and willed me back on my feet physically and emotionally.
I am a lover of music. I write it, I sing it, and I just brought home a new addition to the musical family: My very own 4 String Bass guitar that I plan to learn like a pro. It has always been a dream of mine to be a female bassist since there aren’t too many in the musical realm. A female bassist that has Epilepsy. How about that? I’m perfectly okay with the sound of that. It can be done.
I am a lover of nature. Mountains, valleys, forests, lakes and oceans. I love it all. If I’m not in it, I’m thinking about it. The greatest place in the world to be. Immersed in the creations of God. Sunrise, Sunset… During these times of the day is when I feel my soul really open and receptive to being ALIVE. Epilepsy has reminded me to value life more than I ever have before. How precious and wonderful it is to be alive. Count every breath as a blessing because life is fleeting and we simply don’t know the number of our days. I’ve spent too many days indoors. In hospitals, in hospital beds hooked up to IV’s and various tests accompanying Epilepsy. Being outdoors in the fresh air is a freeing thing that I cherish dearly.
Art and writing are close to my heart. Epilepsy can never diminish my love for that. I love to paint, sketch, write poetry and song lyrics. All of these things I either go on a journey separate from my epilepsy or I use in coupling with my Epilepsy to tell of my journey and struggles with this diagnosis. Though I am no Bob Ross or Edgar Allan Poe, or Adele, HaHaHa I absolutely love pouring my heart and my time into creating something visually, poetically or lyrically.
Upon my Epilepsy diagnosis, I learned to love health and wellness. I discovered a love for cooking and exercise. I was and very much am determined to rise above and become as healthy a person that I can be through the foods I eat and strengthening my body. I gave the boot to most things unhealthy to consume and I found a love for yoga, Pilates and a regular exercise regiment. In turn, it reaps benefits to help me with staying seizure-free, stress-free and overall I am happier and much healthier. Water has become my new best friend in place of my old best friend Dr.Pepper HaHaHa. I gave up soda and all things artificial more than a year ago upon discovering the manufacturers placing artificial sweeteners in these drinks which are known to be dangerous to not only everyone but especially those with medical conditions such as Epilepsy. In home cooking, not only are you able to monitor what goes into the foods you eat, it can also be a fun and exciting experience. Cooking new things, cooking challenging things, cooking classic home made things. No burger joint can stand up to that!
So when Epilepsy stands aside, when I’m not taking 14 pills a day, when I’m not battling seizures, you can see there’s so much more to who I am. I’m merely scratching the surface however but this is a glimpse that I am giving. Epilepsy is only a part of me. It has not taken the controls over my entire life and never will. I simply won’t allow it. Until there’s a cure, I vow to battle it, defy it and do everything in my power to overcome it. I am alive and I will live. Sure, seizures will knock me down but I always get back up to fight another day. Lord willing, I will be given many more days to stand strong, live life, embrace life, encourage many, educate the masses, and partake in a cure hopefully one day alongside the other 65 million diagnosed with Epilepsy.
Until such time, I encourage you too, to live. Live life to the fullest. Embrace it with all you’ve got. Do things you love (Responsibly of course). Try new things, do things you’ve always wanted to. Pick up dancing. Do something goofy just because you can. Watch a sunset or sunrise. Run a race for a good cause even. Whatever it is you want to do, if you can, go and do it. Let it be known that Epilepsy doesn’t stand in your way from living life to the fullest. That there’s more to you than your diagnosis. That you are capable of doing many things even so. You will be so glad that you did. I know I am.
Write me and let me know about your hobbies and interests, ambitions and new ventures aside from your diagnosis. What are your dreams and hopes? What sort of things do you make Epilepsy take a backseat for?
