ART037So, here’s the thing:  when I am in it, I don’t know if it is real or if I am making it up.  At least, at first.  But how long does “at first” last?  How long does it last at first?   See, I just noticed that I typed that twice.  I choose not to correct the mistake.  I am so good at covering up my seizure-induced confusion from the public eye.  Maybe I shouldn’t.

This a.m. I wake up feeling gloomy. Beat myself up about it.  I am lazy. I don’t want to get out of bed.  slug-a-bed.   Why am I so depressed?  How much is it my weak character, how much a come-with of having epilepsy?   And isn’t that just a cop-out?  Isn’t the essential “I” that is not this body strong enough to overcome this purely physical glitch?  Or is it not simply physical?  Is there a spiritual, other-dimension aspect to this particular affliction?  I suspect the latter.  It adds to my sense of hopelessness.

I manage to get up and notice the day finally. Get dressed; start some laundry.  I need to pee.  Keep noticing that I need to pee.  That is my first indicator — noticing that I keep forgetting to pee.  Living alone, my body is my “other,” my witness.  Ironic.  At this point, I start to wonder if I am making things up.  Am I being oversensitive?  Imagining stuff that isn’t really there?  Just having morning spaciness?   Experience has taught me to try to override these doubting voices.   But it is hard.

I am wandering in circles in the kitchen.  I think I should get the hell off, away from that tile floor.  My eyes tear up.  I am hungry.  Which pull is the greater?  Fear or hunger?  I convince myself that the fear is imaginary and start boiling water for chop-chop eggs.  Put breadphoto by Lisa Lindahl in toaster, justifying the illegal carbs by the seizure activity I just denied moments ago.  Ah, the intricacies of cognitive dissonance!  All the time I am waiting for/preparing the food, I am monitoring myself. I take another pill, then am concerned that it might be the wrong one.  I go to another bottle and take another pill.  I announce to my empty house:  “I am really sick,” and eye the tile floor again.

Now I am in my bed, belly full.  Safe.  Annoyed.  Feeling foolish and interrupted.  Apprehensive.  Nonproductive.  Will these “little seizures” escalate into a biggie?  Dunno.

I hate this crap.

This is the stuff that doesn’t make it into the radio interviews.

*I know this is a politically incorrect term these days.  I am not an “epileptic;” rather I am a whole person, one who also has a disorder (or is it now okay to say “disease”?  I can’t keep up) epilepsy.  But on mornings like the one described above, I don’t give a damn.  And I am publishing it as I wrote it on that long-ago morning.

2 Comments

  • thank you for writing about something so personal and so hard for others to understand.

    • Thank YOU for taking the time to read it. I hope by writing about my experiences it will help others understand, will help to educate others about a highly mis-understood chronic illness that has no cure.

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