With an idea that struck me like lightening having manifested itself in my head over the weekend, I decided to change up my plan of writing about that subject. Instead, I will focus solely on those who have willingly agreed to divulge their personal and inspirational stories further to Ann Eshaw’s last week. The tales belonging to these individuals who continually conquer epilepsy, who convey their achievements, lifestyle, attitudes and capabilities, display an immeasurable strength. As an epilepsy sufferer, I find there are always elements of these stories that I can take away to improve the outlook of my condition. Each and every one of these men and women welcome every day with a gumption not all of us possess. And so, on that note, I think my original idea of incorporating the completion of my first major project of apron making, however proud I may be, can wait for another time – now I have you all waiting with bated breath!
So this week it’s Megan’s story…
People can develop Epilepsy at any age, but I, myself, was diagnosed with Epilepsy in my first year of college. I remember waking up one morning in my cramped little dorm room at UCLA and I had a throbbing headache, I was exhausted, my limbs felt like lead, and I couldn’t speak well as though I had something wedged in my mouth. Feeling dizzy, I made my way over to the mirror and opened my mouth- my tongue was grossly swollen, black and blue, and there were pieces hanging from it… I panicked and started to cry. What was wrong with me? I’d always been in perfect health – my Mom’s an amazing cook so I ate healthily, and I was extremely athletic. Crazy, but I knew – I’d had my first seizure. I was terrified.
I won’t bore you with the daily details from 1999 ‘til now, yet I will say a few things. Over the next year, I continued to have seizures while trying numerous drug combinations. Tegretol gave me a rash, Depakote made me lose huge clumps of hair, Dilantin gave me Steven Johnson’s syndrome (from which I lost tons of weight b/c I couldn’t chew or my gums would bleed), Neurontin, etc. I had tests. I wasn’t allowed to drive anymore. The drugs and the seizures made me feel as though I had no control over my own functioning… I was self-conscious and scared. I’ve fallen, sliced my nose and gotten a black eye (the dresser obviously won that battle). I’ve gashed my arm on a shower door as I fell into a seizure while washing, choking on water, and had to crawl on all fours out of the tub. I’ve watched myself have one in front of a mirror, etc. And I’m a fortunate one.
To wrap up my story, I’ll say this, I gave birth to a beautiful baby boy in April 2013 and pregnancy was one of the most incredible times in my life. Yet, it was also one of the scariest. After not having a seizure in several years, I began having them again due to the fluctuation of hormone in my body. And again I was back to that uncertainty of my first year- Why is this happening now? How come my pills aren’t working? Am I going to hurt my baby? And my greatest fear- if there’s something wrong with him, it’s my fault…
I decided then that I needed to talk about it.
I started first with a Facebook page dedicated to epilepsy awareness through my experiences, and raising money for my participation in The Walk to End Epilepsy put on by The Epilepsy Foundation of Greater Los Angeles. I raised $5,000.00 in the first 2 weeks alone… It was my first time really asking people for money, which I find uncomfortable, but my history with Epilepsy trumped my hesitation. It was an incredible experience. So, I kept my FB page and eventually established a blog just so I could document my writings all in one place for my own safe-keeping. With encouragement from others, I’ve recently started to share the blog and post more of my experiences. Although my Facebook page and blog site are both humble in the number of “followers,” I have had numerous interactions with so many others just like myself who have always been hesitant to share their own story. Those exchanges are invaluable and I find my epilepsy has added a whole new sense of purpose for me… we’ll see where it leads.
Thank you for allowing me to share my story and feel free to visit my pages and/or contact me!
And you can find me on Linked In under Megan Davis.