Laboring in the Labyrinth

I've noticed that the more intense the period of time that we're going through with epilepsy and the more trouble we're having in making sense of it all, the more I tend to be at a loss for words--and so, the less I write. 

I've also noticed that during these times, when the chaos of epilepsy is overwhelming--I often turn to analogy.   Analogy doesn't require that the details of our epilepsy journey fit into a coherent whole.  It doesn't demand that we decide which interpretation of our recent experience is more correct.  Analogy doesn't even require that important things be sorted from unimportant things.   Rather, analogy is like a gestalt of our epilepsy journey.  Like an impressionist painting, analogy simply gives voice to the feel, the geography, the experience, and the emotions of being in a particular situation.  Analogy conveys some aspect of what is like to be us right now, living and experiencing what we are in regard to epilepsy. 

Over the few years since I started this blog, I've written several posts analogizing living with intractable epilepsy, to various things:  To living with the threat of a tornado.  To being Dorothy from the Wizard of Oz in her airborne house.  To being adrift in a churning sea.  To gambling with Alice (in Wonderland).  To living the X-Files.  To living in the dark without the light of hope.

And so here we are in another difficult period of time.  Confused.  Overwhelmed.  And for me--at a loss for words.  But yet still yearning to express something of what it is like to be here.  To be us.  In this situation.  And so, analogy slips in again.  At least until understanding, context, and interpretation can be better chosen.  And until our ability to sort out the important from the unimportant is in evidence with some better degree of confidence.

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These days with epilepsy, it's easy to feel as if our lives are pressed in close, and that the spaces we inhabit are dark and uncomfortably close.  Life has become earthy and essential, stripped to its essence.

Sometimes it seems that we thread our way through the possible pitfalls of life with epilepsy like Theseus cautiously threaded his way through the dark tunnels of the labyrinth under King Minos' palace, always acutely mindful of the Minotaur--that fearsome monster that had already gobbled up so many of Theseus's strong and beautiful young compatriots.  The same Minotaur that will eventually, inevitably be waiting around, if not the next dark corner, then the one after that.  Or the one after that.

We too cautiously shuttle our daughter Awesome through the narrow passageways of daily life, inching our way along, cautiously, ever mindful of the beast that might be waiting around the next corner.  But unlike Theseus who must encounter and best the beast only once to save himself and his companions, we--because we can neither find our way out of the maze, nor best the beast--must encounter the beast time and time again. 

And so we live our lives as all warriors who would win and not fall, do--aspiring and straining always to be prepared.  Thinking strategically, acting strategically.  Never neglecting to having essential life-preserving, fighting implements at hand.  Always positioning ourselves so that when--without warning--the battle begins, we're more likely to be in an advantageous position.  Not caught unprepared and unawares.  Not having inadvertently put ourselves at a disadvantage, watchful not to have let one thing lead to another--and lead to another--until we are deep down in the dead end of so many wrong turns (without a thread to follow back) that the battle is lost before it has begun.  And so, we arrange the details of our lives--those over which we have control--carefully, ever mindful of the things that aren't there, but could be in the next moment.  We make sure we've charted our way of escape, as Theseus did his, by unwinding a string behind us.  We make note of our journey, every turn, every step.

It's a war waged on an epic scale,  and yet the combat is close and intimate,  It's a battle that's being waged within the confines of a life that so often appears, from the outside, to be normal.  Sometimes it seems like we live life on two levels.  The level where everything seems deceptively normal--and the level where things are very different from the normal that they seem, but where things are much more consequential and critical.

The choices we make from moment to moment can seem so mundane, but we also know that every time we choose which way to turn in the maze ahead, the choice brings with it real consequences--good or bad--that follow.  We try to choose carefully.  And always, whenever possible, to make an informed choice. 

It's not until you experience some of the defeats and see the ferocity of the battle--the seizures that break in on the everyday life and their seriousness--that most people who know us and Awesome begin to understand the import and seriousness of the battles we fight, the care we take to prepare and defend, and what is really at stake in the bigger war we fight. 

But, because so few really understand the hidden world where we shuttle about like this, it's a lonely life we live in the trenches, in the hidden caves underground.  Like Theseus in the labyrinth, we labor  alone.  Bravely battling the beast when we encounter it.  Deep down underground.  In a confusing, twisted maze for which there is no map.