The Confusion of Epilepsy: Dorothy's Airborne House & Bits of Colored Glass

Our epilepsy journey these past few weeks has been like the bits of colored glass in a kaleidoscope.  The little bits of bigger problems that fill our lives shift around constantly forming different configurations, but never seem to fit together into a whole.  We have fragments of medical care.  Isn't that the only way medical care comes in the US?  In little pieces that you are left to try to fit together yourself since there is no one whose job it is to do this?   To fit the little fragments into a coherent whole, to interpret them, and to help us understand how they should impact real life decisions, large and small?  Broken off and out of context.  Reflected off the surfaces.  Confusing.  Where does reality begin and end?  Where do the mirrors begin?  Conflation?  Magnification?  Diminuation?  Conjecture?  Truth?  Description? Interpretation? Understanding one thing or the whole situation in context?   What is a reasonable interpretation?  An unreasonable interpretation?  There is at once too much information and woefully too little information.

While it's often possible to describe or to gather descriptions of various epilepsy related things, putting them all together into a coherent, understandable whole is much harder.  And interpretation is a step beyond that.

Fragments devoid of context leave me confused.  Struggling to find context.  Where are the societal narratives that reassure?  That give shape, form, meaning, and context to the stuff of our lives?  There are none.  And that makes it all the harder.  No context.  No archetypal narratives.  We must invent our own.  And struggle to find a reasonable context.

We're not stupid people.  But we are constantly confused by the kaleidoscope of experiences and bits of information.  By the fleeting interactions that doctors offer.  Those short interactions aren't nearly enough to help us begin to build the understandings and constructs we need in order to start to learn to live in this foreign reality called Epilepsy.

 Too often I feel like Dorothy in the Wizard of Oz when--trapped by a harsh reality bearing down on her, shut out of the safety and
  companionship of others--she flees to her house, and into her room, just as the tornado hits.  The house is whirling and out the window she sees bits of scenes meaningful to her.  But nothing that fits together to make any composite sense.  No answers.  Just whirling scenes.  And every scene prompts more questions. Whirling doctor's appointments.  Genetic tests.  VEEG results.  Snippets of conversations with disparate doctors.  Unusual case.  Difficult case.  Complicated.  Complex.  Atypically Atypical.  Dialeptic.  Elements of focal and general.  Normal child.  Lots of cognitive reserve.  Doing well.  Disabled.  Not disabled.  No answers. You're going to have to bide your time until medical science advances.  Probable this, probably that.  Medical science can't diagnose these right now.  Not really sure.  Blah. Blah. Blah.  The scenes fly past our windows.  Ever faster.  Ever more confusing.  And the drumbeat in the background is of the seizures themselves.  One minute your child is fine.  The next, epilepsy has her in its grips.  The rhythm is that of Epilepsy's claws clutching, unclutching, but never stopping.  Nothing works to stop the drumbeat of seizures.

The whirling pieces...amount to one big question mark.  The pieces to the puzzle, the bits of colored plastic, the meaningful scenes....fly around in my head like a dream.  Like a nightmare in which I am trying to gather them, but can't quite grasp and hold them.  They slip away.  The clues to Awesome's epilepsy.  The things needed to finally have some idea of where we stand.  Now.  In the future.  For treatment.  For life, normal or not so normal.  For what is reasonable or too risky.  For whether we're being too conservative or not conservative enough.  For what is safe and what's not safe. For what is ridiculous and not ridiculous.  For how we're supposed to think about where we find ourselves.  For how we're supposed to think about the relative severity of Awesome's epilepsy. Fleeting encounters with doctors, the test results, the seizures.  It all leaves us feeling like we're out there flying, flapping, flung in the wind. Not anchored.  Flying in the gathering darkness.  Without a map.  In the chaos.  Like Dorothy in her airborne house.

I only wish that in the end our confusing flight could come down on Epilepsy like Dorothy came down on the Wicked Witch of the East.  And that Awesome could then steal Epilepsy's Ruby Red slippers and we could--with courage, heart, and brain-- journey with her until she clicked her heels and said, "There's no place like home, there's no place like home," and we would suddenly find ourselves back home again in Kansas.  Healed.  And seizure-less. Embracing each other in happiness.  Enthralled with the warm blessing of normal life without Epilepsy.

Instead, I often fear that we're on a Yellow Brick Road journey to the Emerald City where, behind the curtain of the Modern Medicine's promised wizardry, we'll find nothing at all with any real healing or restorative power for Awesome.  Just impotent blustering.   And the temptation to engage in high-stakes gambling--something that has a real chance of resulting in harm, not healing.  Nothing with the power to remove Awesome from Epilepsy's clutches and return us to the days before we went flying to find ourselves in Oz.

Will we be forever flying in an airborne house detached from the real world?  An airborne house where we'll continue to watch meaningful but disparate and confusing scenes flying past our window?  And where we'll be forever looking through the lens of the kaleidoscope, trying to make sense of the turning, dropping, shifting bits of colored glass?