Epilepsy

Facing The Fear Of: ALONE

“It is in times of solitude that God refuels us and we can hear His voice.”

awesome

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.

Conquer.

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!

4 Comments

  • Todd

    Hi Tiffany,
    I always do appreciate when you let out about what you have going on. This is very brave of you. I have had seizures for the majority of my life. 40 years since I was 5.
    At this time, I am still struggling. Always having worries about what people think of me. How others might , or could or do. When it is anxiety running around in my head.
    I am not giving some the benefit of the doubt. Dealing with unkind people. Snide and sarcastic things I regular see. I feel that there are many that are only out there for their own benefit.

    Siblings had never been receptive. They would never ask and still don’t to this day. Early in life, people would look at things and be so scared they would start pushing me away. What I then did is hole myself up,not wanting to be around others because I don’t want to get that.
    I have had further struggles in my life. My Mother, I feel, doesn’t like me for what I have become. She had it when she was young, and may think she did this to me.
    Dad never asks anything. And I continually get told what it is I need to do. Some simple love and affection would be great. But I never see it.

    They have also wrapped their selves around me so much. That they want me to do what they want. So I am stuck in a cycle. I have issues with approaching people that I just don’t do it. and stay away from controversy.

    I am trying as best I can. But sometimes I feel that there is no way of conquering anything.

    I almost deleted this because I was so angry at myself for pouring this out to basically anyone.

    And I am also telling myself, that maybe what I believe is actually not what others do see. Not giving myself the benefit of the doubt.

    My epilepsy is limited and mild and are not like others , maybe like you. So I constantly do pray for all within this struggle.

    God bless for having the courage to say what you always do. And for Chris being a rock with you at any time.

    Todd

  • Lowell G. Evans

    Tiffany, Thank you so much for “Tell It All.” Truly with the onset of epilepsy, it has the ability to affect the individual in more ways than one. I see that you have “Found Your Power” within Epilepsy and I feel that is the key.

    You mentioned the auto accident you were in. Well you survived that so there must be something else for you to do! What if the accident has never happened? Now you are reaching out and touching the lives of individuals all across this country! Keep up the “Great Work” and we will be spreading the word that “We have epilepsy but epilepsy does not have us.” God Bless! Lowell G. Evans- Author of: “The Village/ Creator of: “Mr. Kevin Bolden.”

  • Sarah

    Tiffany,
    I a read your blog, I wanted to yell a “You go girl!!” Epilepsy, like any ongoing-medical issue, can be a double edge sword. At times, I am so grateful I was not born with a condition that was much worse. However, at times, I get frustrated at this perplexing condition. I was diagnosed, at the age of 6, with photo-sensitivity absence seizures. I endured multiple trips to drs since no one had seen my kind of seizures before. Finally got diagnosed correctly around 8 or 9. However, it took another 5 or 6 years to find out what meds would work best. I have been diagnosed wtih ADHD/ADD and have had 1 grand mal within my life. Actually, in the past, me and my docs have thought I had more grand mals. But, recent tests have indicated I have a tendency to pass out in the morning due to low blood sugar. I have a daughter who has the same type of seizures I do (she also has high-functioning Aspergers & ADHD). We are on the same seizure medicines too! I realize now more than ever that God intended for me to channel my experience in dealing with my seizures for helping my daughter deal with her medical issues. I always knew that God always will work situations out for the best, if we allow it. (I have another story about my “sudden” clean bill of health 3 days after my church and daughter prayed over me. Seems drs didn’t know the reason I passed out recently; even my neuro thought it was a cardiac issue!) I know that no will be able to “understand” exactly what I go through-that is an unrealistic expectation of people and it leads to constant disappointment (something else that is not good for your well-being). I am now 45 and a single mom, and I work as a legal assistant at a major law school. Epilepsy will beat you only if you allow it. Yes, we have the tightrope of life we have to walk (It’s alot harder for us!) but if we look at what we have been given in life, we can help others with with their Epilepsy journey. Hopefully, we can make a difference in this world and with the lives of others . I will be cheering for you and your journey Tiffany. Thanks for great postings on your blog!

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