The Nature of Hope in Intractable Epilepsy

Will there really be a morning?

Is there such a thing as day?

Could I see it from the mountains

If I were as tall as they?

Has it feet like water lilies?

Has it feathers like a bird?

Is it brought from far off countries

Of which I've never heard?

Oh some scholar

Oh, some sailor

Oh, some wise man from the skies

Please to tell a little pilgrim

Where the place called morning lies
                                                                             --by Emily Dickenson

                                                                 
It's been a rough week.  Most weeks with intractable epilepsy are.

This one was rough, not because of the seizures--there were relatively few--but because we had a brief fling with Hope.

Hope awakens the sleeping heart.   The heart that has already mourned, adjusted, and learned to be content.  Content, not because this is the life you would have chosen.  Content not because it's the best life, or a normal life by objective standards.  But content because it is the life you have, the life you've been given.  And because life itself is always a gift.  Life is amazing.  Even when the specifics of your particular life aren't ideal.

Like most families living with intractable epilepsy, we've become accustomed to the darkness.  To the darkness of  seizures, yes, but also to the darkness of intractability.  The fact that nothing really works to eliminate seizures or even slow their frequency.  

Like most families living in this situation we're making the best of it.  Our eyes have adjusted to the darkness.  Over and over again, over the past few years.  We're no longer expecting to live in the light of Hope.

It's not that we're particularly cynical.  It's just that it's common knowledge among both neurologists and epilepsy parents that once your child has failed at least two trials of  appropriately chosen anti-epileptic drugs (AED's), the likelihood that any future drug trial will be successful drops dramatically--to about 5%.  And that chance of success continues to decline with each new additional AED trial.  Put a different way, that means that any new drug trial has a 95% or higher chance of failure.  And so you learn to adjust to the darkness.  You just don't want to look Hope full in the face because you know that 95 times out of 100, she's not there to stay.  Any relationship she might have with your family is not going to be permanent.  

The human eye has two main types of cells:  rods and cones.  The rods--the night vision cells--are far more sensitive than the cones--the daylight vision cells.  When your eyes are plunged into the darkness, at first you panic because you can't see.   It's like that with epilepsy when you start to realize that the first AED has failed to work....and then the second one....and so too the third....and so on and so on.  But then, as the adjustment is made and your eyes switch into rod mode, you realize that the darkness, though still not light, is lighter than you first thought.  Your eyes adjust; and you switch to rod mode, to night vision mode.  Those of us who live with intractable seizures have worked through--and are continuing to work through the fact that this is our life.   And to make peace with our lives.  And to learn to see with our night vision.

This much is true: the darker the place, the more the heart becomes truly thankful and joyful for every good thing in life.  And there are a lot of good things in life.  Infinitely many for which to be thankful.  And even to happily celebrate.  And for every disability, there are corresponding abilities.  For every sad thing, a happy thing.  This is one of the adjustments--of vision and of the heart--that takes place with chronic illness.  The eyes and the heart do adjust to the darkness.  And this adjustment changes the way you see everything.  Though you live in a dimmer world, everything with any light is brighter.  More luminous.  And frankly, you begin to see even the simple things that others take for granted--the good things in your life--as positively amazing.  There is a magic to dim candlelight in the dark.  To moonlight off the water.  To moonlight off anything.  Living in the dark you learn to marvel and admire every tiny ray of light.  And your eyes have adjusted so that you actually can see every photon.

But as I said earlier, Hope wakes a sleeping heart.  Hope unsettles the adjustments that you've made.  Hope brings blinding light into what had become an accustomed-to and increasingly familiar, comfortable darkness.  And so this week when Hope suddenly peeked around the corner into our world again--with rays of light shooting out and blinding us--our eyes struggled to find the comfort of the darkness again.  After all, when your eyes are accustomed to darkness, and then there is bright light you struggle to adjust.  If you look straight into the blinding light, you lose your rod vision and are blinded as you wait for your cones to awake.  And so we kept shielding our eyes.  Providing our own darkness.  Preferring not to look Hope full in the face.

It can be frightening to look Hope full in the face.  As families living with intractable epilepsy can tell you, we've looked Hope full in the face many times before.  And it's not turned out well.  What if, in grasping at her,  you scare her away?  What if Hope takes one look at you, sees you staring at her, and like a deer eating at the edge of your garden, once discovered, is spooked and bounds off, jumping over all barriers, and slipping through your fingers yet again, like so much water that can not be held or contained, and is simply gone?  And so, though you know Hope's there, you pretend for several days that she's not, protecting yourself from disappointment, yes, but more importantly, protecting your eyes from her blinding light, and the difficult, costly adjustments that she demands.  First to the light.  And then, if she leaves again, to the darkness.

It's not that we don't want Hope.  We desperately do.  We'd give almost anything to have her come live at our house.  To live in her house.  Hope's house is light and full of windows.  Hope is a sunny day where blue skies with fluffy white clouds float lazily by outside the windows.  It's a happy house full of sunlight and the promise of the future.  It's spacious and airy.  Uncluttered but homey. Hope's house has high ceilings and cushy couches.  With a a tea kettle whistling on the stove or a pitcher of ice cold fresh-squeezed lemonade sitting on the counter, ready to be carried to the place where it can be enjoyed--a shaded table on the deck that overlooks the ocean lapping at the shore below.   On a clear day you can see the families playing on the seashore, building their sandcastles, wading into the cool, clear water, sunbathing, basking in the rays of Hope.  Families that live in Hope's house have seen the morning.  They know there is a day.  They have lived the morning;  they enjoy the light of day.

All of us who live in the darkness of Intractable Epilepsy would give almost anything to live in Hope's house.  But Hope is more elusive and mysterious in her dealings with us.  We've looked her full in the face many times now, dazzled anew each time by her beauty.  Magnetically drawn to her though we know we shouldn't be.  She has beckoned us come.  And we have come, eagerly.  But somehow, we and our loved one with epilepsy never arrive at that house.  And then as soon as our eyes adjust to her dazzling light, we find ourselves back in the darkness, waiting for our rod vision to kick in again.  Disoriented, blind, and regretful.  Needing to go through the process of adjustment yet again.

It's a familiar cycle that we've learned, through experience, to avoid.  Because in the end the interactions with Hope simply leave you in a worse place.  Back in the dark again, once again contemplating anew the nature of the darkness in which you live.  The darkness that you were perfectly comfortable living in last week.  The darkness to which you'd already adjusted.  The darkness to which you will once again adjust.

I could describe exactly what lured us to Hope again this week so that--though we resisted for days--we finally did uncover our eyes and let them become accustomed to Hope's light.  I could talk about exactly what it was that  persuaded us to look around at the daylight world that others inhabit and dream that it might actually be ours.  To think that we might actually be moving into Hope's house.  But I won't.  The details aren't important.

But I do remember what it was like when I entertained the idea of living in Hope's house.  I imagined Awesome living a seizure free life.  I imagined transitioning from the life we lead now to something more akin to the life we had with our sons when each of them was 12.  And then a teen.  And of college age.  And the joys of those years.  Their increasing independence.  Their amazing lives filled with amazing energy and activity and accomplishment.  The easy life they--and we--lived compared to the life we now live. I imagined Awesome living this sort of life.  Being able to do age appropriate activities again.  Things that others her age take for granted.  Like bathing alone without my supervision.  Sleeping alone.  Being alone in her bedroom for more than 5 minutes without someone checking on her.  Going on sleep overs.  Not having to be supervised more closely than her three year old niece.   Starting swim team and being with her peers.  Being able to wake early in the morning and do morning activities without the threat of seizures.   Living a life in which the world and all its wonders were again open to her.  A world in which she could one day drive a car.  And go away to college.  And live independently.  And one day get married and have children and be able to drive her children wherever she or they want to go.  A world in which she could pursue her dreams without Epilepsy stalking her and dragging her down.

Walking into the light of Hope was amazing while it lasted.  I suppose even if it's costly it's good to catch a glimpse of Hope every so often.  But we are back to the comfortable, familiar darkness again.  Our eyes have readjusted.  Our hearts too are back to appreciative.  We are no longer coveting Hope's House nor the position of those who live there.  We're back to being thankful for the light that we have.  It's enough light to live by.  It's enough for us to be content.  Of course, we wish for more.  We wish that one day there will be a morning.  One day there will be a day.  One day Hope will come and take us by the hand to live in her house. Until then, dealing with her in all her blinding beauty is just hard.  And costly.