Epilepsy Pre-surgery Lament

Awesome's eyes are worth a thousand words.
She's in the midst of the 3rd night in a row of sleep deprivation.
The straws in her mouth, her hand a claw, are an attempt at humor
But she's beyond the point at which humor makes sense
She is no longer capable of laughing.  Nor am I.
There have been tears.  And anger.  And bargaining.
And enforced exercise. 
This is all overlaid on the base
Of her experiential-informed loathing of hospitals.
And on a deep feeling of danger
A fear of the future
Feelings which pervade this whole process.

During her hospital VEEG,
Her complete loss of privacy has been a given.
She is watched 24 hrs a day.  For day after day
There is sadness.  And irritation.  And sobbing.  And despair.  And determination.
And hopelessness. All of these repeat endlessly in a purgatory that just won't stop.
It is a variation on a theme
In a pre-surgery process that was not just the week long hospital VEEG,
But also a second VEEG--with its own frustrations--later that month
And many other previous tests
This is a variation on a theme that has been going on for more than 8 months now
Repeated long periods of waiting
Interspersed with impossibly intense and trying testing trials.

When she agreed to finally start the epilepsy pre-surgery testing process, back in April
Awesome and we imagined the process would happen over the summer.
But it didn't.
The testing process didn't start until August, and has dragged on and on and on
And it will continue to drag on and on and on.
We wait.  We wait and wait.
We wait and wait and wait and wait.
Patiently at first.  And then, over time, patiently with great effort.
But occasionally, as time goes on, not so patiently.
And eventually impatiently.
And at times, we wait in anger. 
Because the way this is dragging on is demoralizing to Awesome.
Dehumanizing and discouraging and depressing.
This anger comes with its own geography of guilt
About a process that is not intentionally difficult.
But is bureaucratically inane.
That doesn't--but should--take account of patient as person

It's been excruciating to watch Awesome's life grind to a halt
We will likely have to repeat this school year because it has been impossible
To do what needs done against the backdrop of such uncertainty
And all the intense anxiety and inner psychological turmoil that it generates.
There are the build-ups to--the getting ready for--hospital visits,
There are the hospital visits themselves, that,
No matter how thoroughly or carefully we prepare for them
(Sometimes I wonder if the prep actually makes them worse)
Are always far worse than we could have imagined
And then there are the weeks it takes to recover from the hospital visits.

And of course, interspersed in there too,
Are the seizures themselves that happen just when you least expect them
The relentless out-of-sync drumbeat
Against which we have no choice but to attempt to live our lives
As normally as can be managed.

And there have also been two ER visits this fall
For status seizures that just didn't want to stop.
And the recovery from those.
From Awesome's point of view, these are like this:
To one minute be at home,
And seemingly, the next minute, to be waking up in a hospital room
With a doctor in your face asking you if you know where you are,
And not knowing whether it's day or night
Or the same day or another day
And how exactly you got there
And what happened to make you end up there.
Yes, it takes a few days to recover, psychologically
To get your bearings again.
And you need time to sleep off the physical and emotional exhaustion.

As a result of all the extreme stress this fall,
There has also been garden variety sickness
With its own mundane miseries and medical trappings,
Doctor's visits, medications, secondary infections, relapses, second round medications
And, of course, the rest required to recooperate

Unpredictable loss of control over your life
And the existential anxiety that results
Are both almost inevitable with epilepsy.
They are two of the most effective tools with which epilepsy tortures its victims
The pre-surgery testing has been just another trying chapter
Simply a more intense variation on the loss-of-control theme
The stuff of which the longer journey that is epilepsy is made

Awesome is like a victim of kidnapping or life-jacking.
We have hit the 5 year mark during this second life-jacking
The first life-jacking--only a year long--was like a movie trailer,
Only suggesting what was to come later.

The sadness and ache I feel in my heart as we wait is so strong that it's physical
I mourn deeply for all that Awesome has lost
For a childhood filled with all the things that childhood should be filled with
For the stuff of childhood that her older siblings enjoyed
For the experiences that other kids her age enjoy.
For the things that she was in the thick of enjoying when epilepsy interrupted normal life
For all the things she was doing, would still be doing, and would have done.
For the childhood she would have had,
I mourn for the likelihood of the loss of the days left in her childhood,
Days ticking steadily away as we wait and wait
Days lost to seizures and all the secondary side effects of epilepsy
Days lost forever.   Days lost to surviving, not thriving.
Because it's hard to see your child, your bright eyed, your smiling,
Carry a weight too heavy for her years;
To lose the spark in her eyes and struggle to smile,
And sometimes, to just stop smiling.  Because sometimes it is all too much.
It's hard to see her world shrinking just when it should be expanding.
I mourn for the child--and then the adult--she would have become
In the presence of all those normal childhood things and experiences
I am sad for the child that she has had to become in the presence of epilepsy,
I mourn deeply for the child that has had to endure
And will continue to have to endure so much
The seizures.  The fatigue.  The losses, one after another.
The close and relentless supervision necessary to be safe.
The worries about her own life, health, and future,
And now, this pre-surgery process itself. 
And this pre-surgery's possible end--a worry all its own.
Whether part of her own brain will have to be cut out to free her from epilepsy.
And whether, with that part of her brain, will go some part of herself she doesn't want to lose.
Some ability.  Some part of her vision. 
Some part of her ability to use language.
(She is a gifted writer, so to lose that would be to lose an essential part of herself.)
Some strength of body she now enjoys.
And maybe even--because we're dealing with the frontal lobe--the loss
Of her ability to effortlessly
Stay within the bounds of socially acceptable behavior.
Epilepsy might very well demand a ransom
A price for being freed from its clutches
Of some ability now taken for granted
An ability that will disappear.

I sit on the bed in our darkened bedroom, worrying.
The roar of the wind is a constant tonight.
Against the dark gray of the night sky,
The black silhouettes of trees pitch and sway.
In the distance, the lights of houses on the facing mountain,
Flicker as the trees struggle and dance before them,
Intermittently obscuring their little lights.
The wind is relentless.
It is strong and stronger still,
Swelling in a growing crescendo until it is so strong
That I wonder if the things that stand,
Will continue to be able to stand.
And just when it seems that all will succumb
That trees will bend until they snap and fall,
That the roofs of houses will be blown off,
And that everything clinging to the surface of the earth will be swept away,
The wind's intensity dials back again.
The volume of the roar decreases.

The undercurrent of fear I feel ebbs and flows with the intensity of the roar. 
The roar from a wind that cannot be controlled.
Whether the roar of epilepsy can be controlled.
And at what price.
Remains to be seen.