I’m one of the lucky ones. I don’t have seizures every day or every week even. It’s the side-effects of the medication that affect me everyday. The meds are always there dragging me down. When I mention them to my doctor, he nods and agrees they are indeed the side-effects of the medications. I take them to essentially numb my brain to prevent seizures. Double vision, dizziness, and poor balance, are all par for the course. Mood swings and depression are also probable side-effects from one or more of the medicines I must take, twice a day.
I struggle with these pharmaceuticals all the time. None of the dozens of meds I’ve tried has given me seizure control. Doctors generally agree that the less seizures you have the better. I’m given to believe that idea as well. But every day I feel tired and disconnected. If I didn’t feel confused, I wouldn’t feel anything at all. Memory problems are a common side effect too. This is the one that worries me that most. Who knows what I have forgotten and what I will continue to forget? Will I someday forget the faces of my children? It might as well be written on the side of the bottle. Oh right, it is. I nod along to stories I don’t remember.
It is the fear that cripples me. The fear of a seizure, the fear of injury or accidental death. I fear I will have a seizure or lose my balance and fall down the stairs. It’s a rational fear. I wonder what it’s like to not be afraid. I wonder what it’s like to remember everything, all the time. Once I forgot my middle name. It’s a bad place to be. In the hospital, confused and frightened and maybe not in control of all your limbs and then someone asks you your name. Every day I fear that happening again. I don’t want to wake up in the hospital. Odds are I will.
I try to minimize my risk, but even standing still is a risk for a person with epilepsy. At any damned second at all, I might fall over and who knows when I will remember what is going on. I don’t remember things every day. One second here, gone the next.
My family will ask me, “What did you just say?” And I will have no answer. Who knows what I said? It’s gone now. I want to live in my life, not live in fear of it. I want control, but that’s just an illusion. My brain is in control and it is an evil beast.
Even when the seizures aren’t stealing my consciousness, they steal my confidence. I don’t want to have a seizure by myself in public. It’s just part of the seizure life: the fear, the confusion, the depression, the loss of control. These things stalk me. What choice do I have? I have to try and keep the monsters at bay. Every day without a seizure is a good day. And some days with seizures can still be good days too. It’s all perspective. There are little seizures and they are always better than the big, bad seizures. The side-effects are better than falling down dead. We live in lucky times, when epileptics aren’t forced to have brutal brain surgery against their will and get locked away in institutions. Nobody thinks I am possessed.
Epilepsy is a roller coaster, a circus ride gone wrong with a quarter stuck in the gears, grinding away, out of control. Every day is a struggle, a fight, a blessing. I have a life after all. Even if it is inconvenient. I have to work around the fear and the shame and the loss of memory and the certainty of more seizures to come.
I don’t hope for a cure. I hope I can keep it together just for today. I hope that every day.
NEXT UP: Be sure to check out the next post tomorrow by Jewel Gibson at livingwellwithepilepsy.com for more on Epilepsy Awareness. For the fullschedule of bloggers visit livingwellwithepilepsy.com. And don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET