November is Epilepsy Awareness Month

Hello, Everyone!!  I pondered all day yesterday about what to write and post here.  I knew I wanted to post about Epilepsy Awareness Month, but I wanted to make sure I got it right.  Plus, I wanted to share exciting news about what my Student Council is putting together for the month of November.

November is Epilepsy Awareness Month.  The whole purpose is getting the word out about epilepsy, what it is, and what it isn't.  It's about raising awareness, and ending stigma.  It's about educating people so they understand what is happening to a person as his/her brain is having a seizure.  It's about helping the public to understand a neurological condition that is often the most misunderstood medical condition in the world.  Once upon a time, well-educated people believed that a person suffering from seizures and epilepsy was possessed by the devil.  It wasn't that long ago that these people were forced to go through exorcisms to drive the "demons" out.  It's only been in the last century or so that people have come to realize that epilepsy is a very real and very serious medical condition.  It's only been the last fifty or sixty years that treatments have been developed to help a person suffering from uncontrolled seizures.  Even with these treatments, seizures can often go uncontrolled because not every medicine works for every person having seizures. 

My daughter has been on eight different medications.  Sometimes they've been combined, sometimes they've been alone, and most of them have failed to control her seizures.  Even now, she's on three medications to control her seizures, and she's having breakthrough seizures every few months.  Because she's experiencing about 90% seizure control, we're not going to change anything. Doing so could mean going back to having dozens of seizures a week, and that very possibility terrifies me.

I think the most effective way to make people understand what epilepsy is, is to explain what it means to me.  My daughter was perfectly healthy for the first sixteen months of her life.  Then the seizures came, and over time, they took so much away from my baby.  Eight months after her first seizure, she had a seizure event that lasted thirty-seven minutes.  It began at dinner at Fazoli's in Abilene, Texas.  She slumped forward, and wouldn't respond to me or my sister.  We picked her up and ran out of the Fazoli's and drove like maniacs to Abilene Regional Medical Center.  We busted into the ER, and as soon as I put her on the gurney, she began to convulse.  She continued to do that for another half an hour.  She bit her tongue, and blood poured out of her mouth.  She turned blue.  It took major medical intervention to stop the seizure, and she basically went into a medically induced coma.  A helicopter was summoned from Cook Children's Medical Center in Ft. Worth, Texas, and she was flown to that hospital.  A day later, she woke up, and though she was wobbly, she was okay.

That event started the worst few months of our lives.  She began having dozens of seizures a week, each worse than the one before.  She began losing skills like holding a cup, walking, and sometimes speech.  In September of that same year, she had five seizures in twenty-four hours, and that prompted a whole new round of treatment that controlled her seizures, but it would ultimately cause her liver to begin to fail and put her in the hospital for a week in February of 2008.  Eventually she was diagnosed with irreversible brain damage, and developmentally delayed.  That was almost three years ago.

Epilepsy is my enemy.  This blog, building awareness, becoming a vocal advocate...all of it...it's my war against epilepsy.  It has taken so much from my daughter, and though I can't protect her from the seizures, I can do this.  I can't fight the AGAINST disease, but I can fight FOR my daughter. 

In this vein, my student council at the high school where I am teaching is doing an Epilepsy Awareness Project based off of this blog.  It's called "The Epilepsy Really Stinks Campaign."  More details are forthcoming because I want to firm some details up before I super publicize it, but I was just so excited after our meeting to start planning this that I had to share with someone.