Living the X-Files: Epilepsy's Missing Moments

Sometimes the TV series or movies we choose to watch during a particular period of life say something about our life at that time. 

For example, there was a period of time when my husband and I watched TV crime or court shows.  These were shows where the good guys (sometimes flawed & bumbling; sometimes sophisticated & cool) always won (Hawaii-5-0, Monk, Columbo, The Streets of San Francisco, Law & Order, Miss Marple, Sherlock Holmes, etc.).  

And it just so happened that during that time, our daily lives included an intense awareness of the need for justice in a particular area of life.  It was a time when we were putting our energies into helping to give justice a leg up (in our own very small way in our tiny chosen corner of the world's problem areas).  When it came time to relax and be entertained, we simply wanted to see good triumph over evil--relentlessly, in situation after contrived situation, day after day, in venue after venue.  We needed that.

And then there was a different, more recent period of time, starting about a year and a half ago...when I began to binge-watch TV medical dramas.  This was sometime after I'd begun to realize that Awesome's second round of epilepsy was not going to be another quick pass-through that would be swiftly out-grown.  It was about the same time that Awesome herself began to be in crisis about epilepsy, and about the same time that I went on Amazon and ordered every book on

epilepsy that I could find there--including a three volume Epilepsy medical textbook.  On nights when I was unable to sleep because of epilepsy worries and real-life epilepsy dramas and traumas and on nights when epilepsy research abstracts or epilepsy textbook topics were dancing through my head in a way that wouldn't stop, I'd find myself lying on the couch in the dark watching House or Grey's Anatomy on Netflix.  As we wrestled with the emerging facts of our own daughter's epilepsy in daily life it was infinitely comforting to contemplate that medical mysteries could be solved--and were, in fact, being heroically solved every single episode by brilliant, brave medical professionals using their creativity, perseverance, and intelligence, even when the fictional cases involved the longest odds and the most obscure of all obscure medical issues.

And while I had no illusions about being any more than a lay person, during my frequent bouts of epilepsy related insomnia--when I was not watching House or Grey's Anatomy--I would find myself reading the epilepsy medical textbooks or trying to understand some aspect of epilepsy by hunting down medical studies on Google Scholar.  In short, what I was watching and doing--and my headspace about epilepsy--all sort of fit together in some weird, but neat and clean way.

I felt like Awesome's epilepsy was a puzzle for which I, like House or the brave surgeons in training on Grey's Anatomy, was trying to seek out the pieces, both to satisfy my own curiosity (because I'm  decidedly a nerd), but also perhaps to help secure more puzzle pieces, so as to perhaps make the puzzle more soluble for Awesome's doctors.  I did all this not because I was trying to play doctor,

but because Awesome is our daughter.  And we love her more than anything.  And we want the best for her.  And because that's what epilepsy moms do eventually when their child continues to have seizures despite everything.

That period of time of watching medical dramas and researching like crazy lasted until the middle of last fall when it all began to fall apart....because Awesome's epilepsy began to worsen.  I haven't told the story of that period of time yet--and I will one day--but let's just say for now that all hell broke loose.  And it all got very complex and unusual and challenging very quickly.  It was all a little alarming despite Awesome having the best of epileptologists and her care being associated with a Level 4 Epilepsy Center (the highest ranking for epilepsy centers) and despite our and our friends' many prayers.  And unfortunately, so far since last fall, though there have been ups and downs, Awesome's epilepsy situation has pretty much stayed that way.

Given all this, these days my headspace regarding epilepsy is very different. And so too, the kinds of TV shows I (or rather, we--my husband and I) find ourselves watching when we're ready to relax and cut the stress.

These days--when we are dealing with the all-encompassing confusion and mystery of epilepsy--we find ourselves watching the X-Files, Stranger Things, and other shows full of unsolved mysteries...

And, of course, as we watch these shows, how could we not find ourselves noticing the parallels between epilepsy and the shows' unsettling take on the world? 

 Recently one particular scene in one episode of the X-Files seemed especially apt.

In the pilot episode of the X-Files, the classic American sci-fi TV series known for leaving viewers feeling spooked and unsettled, the two main characters, FBI agents Scully and Mulder, are driving down a deserted road at night during a thunderstorm's downpour. The two are discussing a possible clue (a handful of dirt) when Mulder suddenly looks unsettled.  In his free hand (he's driving), he holds a compass, which is spinning (what a great metaphor for disorientation!); next he glances unwarily up (through the windshield) at the sky above.

Scully:   "You OK, Mulder?"

Mulder doesn't answer right away, but glances at his digital watch: the watch says 9:03.

Mulder: "Yea, I uh...."

Scully:  "You looking for something?"

A moment later the screen is filled with surreal images: over-exposed, underexposed, inverted, and off-kilter shots of Scully and Mulder, slowed down, lingering, all very surreal...

And then, just as suddenly, once again we're back in normal everyday reality.

Now we see Scully and Mulder's car barreling toward us through the pouring rain.  Abruptly the car's headlights turn off; the car comes to a stop.

The two FBI agents are stuck in a stalled car in the middle of a thunderstorm, in the middle of nowhere surrounded by nothing but trees. It's still.  It's dark.  The rain is pouring down by the bucketfuls.

Mulder turns the key in the ignition.  Nothing.

Scully to Mulder: "What happened?!"

Mulder: "We lost power.  Brakes.  Steering.  Everything."

Mulder glances at his watch again: the camera shows the time very clearly: 9:12. Nine minutes later than it was just seconds ago.

Mulder declares: "We lost 9 minutes!"

It's creepy to contemplate what it must feel like to be Scully and Mulder and suddenly be missing 9 minutes.

If you put yourself in their place: One moment you're driving down the road, and the next moment, it's not the next moment.  It's actually 9 minutes later.   You're there.  Stranded.  Confused.  Disoriented. (I'd also be frightened, but fear doesn't seem to be an emotion in Scully and Mulder's repertoire.)

The world has gone on, but you've not traveled with it. But is that really true?  Surely you did travel with it--after all, you were there nine minutes ago... and now a few seconds later you are here nine minutes later.  But what happened in between?  How did you get from then to now?  Where did those missing minutes go?   What happened to your experience and memory of them?  And what happened to make the missing minutes happen?

Clearly, indisputably, something--whatever it was--DID happen.

But we never do find out exactly what happened--how or why Scully and Mulder experienced those missing moments.  This and other mysteries in the pilot episode quickly clue viewers in to the fact that they should not expect any but incomplete, unsettling answers to the mysteries that the series explores-- incomplete, unsettling answers that leave more far more questions unanswered than answered, and that only serve to spawn both more questions and more difficult-to-answer questions.  This plethora of unanswered questions leaves the viewer feeling the depth of the mysteries involved.  It also sets both the tone and the message for the series: there are questions for which there are no answers.  At least not that you as viewer can expect to know.

Perhaps because life is full of mysteries for which there are no answers, or rather only unsatisfying, ambiguous, and confusing answers--answers that leave us feeling unsettled and creeped-out....in real life we've all learned not to dwell on and contemplate the mysteries.  But while we may avoid thinking about the unsettling questions, the X-Files finds and shoves these unsettling mysteries into its viewers' faces-- and then it leaves them there--in all their unsettled glory--for both contemplation and emotional effect.

The world of the X-Files--where answers to unsettling mysteries can't be expected to be forthcoming--all too often--and right now in our lives--parallels the experience of epilepsy itself where ambiguity, uncertainty, and dearth of answers seems to be the rule rather than the exception.

I have never liked unsettling mysteries, however apt they are, and however compelled we feel to watch them right now.  It's really not too hard to understand why we should feel drawn to unsettling, creepy mystery shows during this period of our epilepsy journey.  I only hope we can eventually find our way out of this creepy, unsettling, mysterious maze that is called epilepsy.