The Bell

   Therapists tell us that one of man's preeminent fears is being buried alive. The term for fear of being buried alive is Taphophobia or Taphephobia may be the reason mining disasters capture and hold our attention, even when they happen far from our shores. A subset of that fear is the notion of being cremated alive. The sense that if one woke, surrounded by flame, enclosed not just in a box, but also in a cabinet, it would lessen one's opportunity for escape.

  In the seventeenth, eighteenth and nineteenth centuries, this fear seemed to reach epic proportions, evidenced by a series of inventions: specialized, safety coffins with an attached bell and pulley system. These systems were designed so that if one awoke after being buried, they could ring the bell and be rescued. Families often hired grave diggers to wait up through the night just in case a bell rang. This practice encouraged the phrases, "saved by the bell", "dead ringer" and "graveyard shift".

When I was small, I frequently endured status epileptics of the convulsive type. At age 35, I went for a blood test and suffered a massive, violent tonic-clonic event and the folks in the Cigna lab thought I had died in the chair from it. All of them left the room and turned out the lights. Only thanks to my husband, who has experience with my epileptic states, was I not carted out by a coroner.

   For me, the idea that one might be perceived dead when she was not seemed possible. I read Poe's short story "Berenice" and a few others by Poe. It seemed to confirm my worst fears, until I really began thinking about it. Still, as calm as I have learned to be, I have told my family NOT to cremate me and to definitely "wake" me for at least three days... And, DO NOT enbalm me.

Just keep me chilled and all will be well...

I think that's reasonable!

Waiting On "The Cure"

   So, I am nearly seventy now. Another couple of years and I will reach that mark in my lifetime and after all this time, I have yet to see a proven cure for Epilepsy. Sure, the drugs have improved. Sure, surgical techniques have improved. But...no "cure" has arrived. 
         I suppose it is something like arriving in the future and there being no flying cars or teleportation devices. Rats! 
     A cure for E. is something vague, something to be hoped for, but probably not very likely to occur, at least in my lifetime. 
     Then what do we do with our hopes? Well, just what we are already doing---walking, running and donating for the Cure. Waiting for it to come. We watch days and then years pass. We read everything we can, we give  to organizations who say they are working for a cure. We stay good-natured and optimistic, thinking positivity will cosmically speed things along, but still there is nothing for us. But for many, a cure is their dream...
     I have an older sister and she is blind. She has the acronymic RLF. Retrolental Fibroplasia (RLF) was caused in the 1950's by too much oxygen administered to premature infants. She does not sit around waiting for a cure, though, many folks have asked her over the years if she would want to be cured of her blindness. She has always answered "no".
      Her dream in life has been to be able to drive a car. She has gotten very excited over the prospect of the self-driving car recently and is hoping she will be able to own and use one one day. Personally, I hope her wish is fulfilled...
      It seems, to my way of thinking at least, impractical or implausible to find a cure for an overarching condition like this because there are so many kinds and types of E. And if there was a cure, upon whom would this cure be bestowed? Would a new hierarchy of severity and deservedness be created to winnow the Some from the Many? 
     I guess I sound a little pessimistic and a bit paranoid here, but these are the kinds of things I imagine with talk of  a pending "cure".
     I get it---I mean all of us would like to wake one morning to the idea that we are solid and no longer prey to seizures, no matter the kind. I wish for that eventuality, too. I am so tired of having epilepsy. It makes me weary down to the nubs of my soul to have to even think about it. I am so tired of having to say to another person that I had a seizure or that I need to lie down, sit down, drink water, close my eyes, etc. because I feel a seizure coming on. And I am equally exhausted of being teased with the idea of a cure, lingering just around the corner.
     If one should materialize, I will be glad. Until then, I am finished waiting for the cure to find me. I think it's a reasonable posture to take, don't you?