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When I'm About to Have a Seizure, but Don't Care

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What if you just don’t care that a seizure is coming?

Of course I care — when I’m in my right mind.  But my aura changes all that, and can even be enjoyable. Let me explain.

I have tonic-clonic seizures when I forget to take my meds on schedule. For a couple of hours beforehand, I experience an aura seizure, during which I have a sense of omniscience. Others’ thoughts open up to me — or so I think. I float from one thing to the next, keeping appointments and being aware of the odd looks people throw my way when I haltingly try to talk or simply don’t make sense. But I just don’t care. Those I’m close to know the telltale signs of my speech pattern. However, I used to keep my secret locked away at work; my co-workers didn’t know what to make of my odd behavior.

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The last time I had a seizure was five years ago. Locked in my aura, I floated around work, knowing I was soon to have a seizure and actively not caring. Calling a friend, I consciously made a point of talking in truncated phrases as often as possible, obfuscating my impending episode. When I think that I could have lambasted myself with meds and prevented the seizure, I want to cry.  As it was, I had a series of seizures and an overnight stay at the hospital. I didn’t fully recover my cognitive strength for a week.

Had I cared, I could have avoided it all. Had I told people at work about my epilepsy and the telltale signs of oncoming seizures, none of it would have happened.

This last episode was during the days of hiding my epilepsy. As long as I remembered to take my meds, I thought, I would be safe and so would my secret. I’m only human, though — I forget, and my epilepsy will never truly leave me. Since then I’ve become much more open about my situation, letting people who are around me frequently know that if I have difficulty finding words, they should ask me what’s going on and not allow me to give them a weak answer.  They should insist I look into my pill box to see if my meds have been taken correctly, and insist that I take them if not.

I find people are grateful that I not only tell them the truth about my epilepsy, but also describe how they could stop a seizure’s progress.  With this new information in hand, there’s no reason for them to fear my condition, and no reason to even inadvertently fear me.

By caring enough to tell others the truth of my condition, I defend myself and others from those critical hours during my auras when I just don’t care.

Getty image by Kieferpix.

Originally published: November 21, 2018
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