I am 1 in 26

If I had a dollar for every time I told my father “I live with epilepsy, I don’t want to talk about it all day.” HA! He got the last laugh there. I am now out to be a voice when I had none At some point, you will meet or already know someone with epilepsy or a seizure condition. It affects 1 in 26. 1in26 The best guess is I had a stroke in utero. If I had to add them all together, I’d say I’ve had 25 grand mal seizures, or tonic clonic convulsions since birth.

The massive cocktail of legal drugs keeps those at bay, but I still get auras, hand tremors, leg tremors, have a horrible short term memory, and easily lose my train of thought. If you are around me any length of time, you know I don’t drink, but I just walk like I’m drunk. (Ok, I drank in college, but we digress) My right leg has very little muscle tone and I have no sense of stepping down (stairs, escalators scare the hell out of me) and I have a death grip on banisters and railings. Same with my right arm. My left had can instantly know, “That’s hot.” It’s a 5-10 second delay for the right. I get bruises and bumps that I have no idea how they got there.

While I am not the type to out dancing all night, strobe lights, hazards on while driving, police lights may cause a mild seizure. Scarier for me are auras that cause hallucinations, exploding head syndrome, limbs jerking involuntarily, just to name a few. There are so many types of auras, but that’s what happens to me the most.

The dry mouth I can handle, it always reminds me to drink more water. Fortunately, it has not been necessary to take tests like the EEG or CAT scans very often. I have an inoperable orange sized cyst in my brain. That is what causes the seizures and the absence of the corpus collosom, what separates your right brain from your left. Yeah, I don’t have that either. I sometimes envy the people who have always been able to have an activity filled weekend and go from event to event. The older I get and the more meds I take, it’s one activity, and I’m out. Exhausted. Dinner and a movie feels like a marathon.  But I am managing. I take my pills, have my auras, my side effects, and get support from church and friends.

I used to have days I wished I was ” normal.” I just had to accept Epilepsy is my normal, and that’s just my pill filled life.

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2 thoughts on “I am 1 in 26

  1. Action-packed weekends are overrated. At least, that’s what I’ve decided after years of wiping myself out with serious busy-ness. It was fun while it lasted, but it took a massive toll. All those years, I was driving myself into the ground. The stress hormones numbed the pain of daily existence, and it was exciting to feel part of something. But at what price?

    Most of my TBIs (9 of them that I can remember – there have probably been more) I can directly connect with pushing too hard, when I wasn’t up to the task. Pushing myself to drive, when I was exhausted from overwork and not fully “there”. Pushing myself to compete, when I was off-balance and uncoordinated and not gauging risk properly. Pushing myself to DO MORE, when what I really needed, was to back it off and rest. Catch up with myself.

    I do have a corpus collusum, but some days, you’d never know from looking.

    Ah, well. Always an adventure. I’m still here… so there.

    Like

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