Monday, April 30, 2012

The Monster Within

I hadn't raced down the hall like this in what?---nearly three months! I was now, heart racing---thinking that we'd be counting from this day forward---how many days since the last seizure?  I stopped at Michael's bedside as Katie eyed me questioningly. Michael was still-- no tonic movements---breathing fairly peacefully (for him); and then...a laugh--- a lengthy, hearty laugh. He was dreaming! That's the noise I heard. It sounded eerily like the guttural sounds of a seizure in progress. He was laughing!! Yay! The monster's at bay for yet another glorious day.

Well...not really. The monster resides within and rears its ugly head during sleep every few moments ensuring that no rest is ever restful, no nap without its perils.

He still amazes me. Michael, I mean. Not the monster.

Other things amaze me too.

How is it that a condition that affects three million people in this country, and kills more people annually than breast cancer receives so little attention? Is so underfunded, so misunderstood?

In spite of a plethora of available drugs, technology such as the Vagus Nerve Stimulator and the ketogenic diet, just over a third of people diagnosed with epilepsy STILL have uncontrolled seizures. Now---that's amazing! And downright miserably discouraging.

I've been trying for years now to raise awareness about this wretched condition called epilepsy. There are some days I feel like I'm whistling in the wind. Sometimes it seems like the only ones who "hear" are those who are all too familiar with this beast because they are personally in its grip.

And then, other times I feel inspired by a David or Susan Axelrod who are bringing national  attention and thus funding to epilepsy awareness and research. I am also motivated by the countless numbers of parents and the loved ones of those with epilepsy who I have "met" via my Epilepsy Foundation blog and on Facebook: the Cindy's, Charise, Joanne, the Julie's, Ginny, Roz, Louise, and on and on. I am grateful for their support and their passionate efforts to educate and find better treatments and someday a cure. Many of their stories have brought me to tears. All of them occupy a special place in my heart. They are---in a word---AMAZING!

So today I am going to try yet another avenue in an attempt to reach more people. This is my inaugural blog on this site. I intend to use it primarily to promote epilepsy awareness by continuing to share our family's experiences. Occassionally I may be tempted, especially in this election year, to share my thoughts about other issues.

And so---another journey begins.