by Stacy Kess

Created on: July 13, 2010

The phone woke me up that morning. It was sitting on the dining room table, and I ran to answer it. On the other end, my landlords began to explain I had made out the rent check incorrectly and would have to –

– I laid on the floor. My legs ached. Everything seemed so distant and, yet, so loud. My fiancé repeated that my mom was on her way and we were going to the hospital. Everything faded again.

The ER seemed very quiet except for the doctors coming in and out of my room, each asking me to squeeze his fingers, smile, stick out my tongue, press down on his hands and walk a straight line.

My fiancé explained: I had answered the phone and a few seconds later, he heard a thud. He ran out to find me on the floor – my arms and legs outstretched – shaking and grunting. He called my doctor and my mom, and they said I needed to go to the hospital. It was a seizure.

April 4, 2006. The pieces I remember of that day are so hazy, but that date is burned into my memory. It was the day I was diagnosed with a seizure disorder.

I would come to realize with the help of my doctor that it was not my first seizure, nor was it my last. But it dramatically changed my life.

I don’t think about my epilepsy all the time, but it affects me all the time.

I have a strong aura. If I think back very hard, I knew something was weird when I had that diagnosing seizure. I can remember going for the phone and the room seeming topsy-turvy. I can remember the sound of that phone ringing so loud and clear. I can remember feeling a funny feeling in the back of my head.

Now I have become so tuned to the seizures, I can tell you immediately in the morning I don’t feel well. I feel tired and weak. I feel hazy and the back of my head burns. If a tonic-clonic (grand mal) seizure is about to happen, my right arm will feel heavy, my heart beat will become crystal-clear to me, and my head will feel so empty that it could float away.

Up until recently, I have been seizure-free since Sept. 2008. Then, last week, I made a mistake. I missed a dose of medication and I started a new birth control, the combination of which lowered my seizure medication levels and opened my seizure threshold. I didn’t have a tonic-clonic, but I had two staring seizures (partial seizures).

Some days, I wish other people could crawl into my head to feel what I feel. It’s hard to explain what’s going on inside my brain, even though I’ve become quite the expert in talking to neurologists and other doctors about it.

I have tried not to let the seizures rule my life. I go to work, I go shopping, I go out with my friends; but I’m careful to take my medications at the right times and to get plenty of sleep. It’s a careful balancing act.

Unfortunately, the key to controlling my seizures – the reason for the seizures – is still unknown. It is said that the vast majority of epileptics will never know the reason for their seizures. We are the people who have not had a head trauma or a stroke, nor are the seizures psychogenic.

I am constantly looking for answers and I hope to find them soon. Until then, I will live my life and hope each seizure is my last.

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