The Ever Moving Finish Line on Beyond the Unmapped Mountains.

As you recover from a seizure

Your service dog and I watch over you
With love and concern.
And I think of the ironies
Of the situation in which we find ourselves.

I think about how
In the middle of hardest January
Following close on the heels of scariest December,
You cried and declared,
That you could not go on. 
That what life had handed you,
That what was being demanded of you
In January
Was too hard.
That you could no longer do it.

(Though we both knew there was no way out
Except by enduring the hard things before you.)

And I told you
Not to give up then.
Because you were in view of the finish line.
And I told you
That victory was soon yours
If only you could endure just a little longer
And push through next few weeks,
That things would start to change
For the better.

And I told you
That your slow, progressive descent,
These past few years
Into a life, less and less normal
A life more and more isolated,
A life less and less like your peers,
(Whose lives were progressively
Opening up during these same years)
Would finally reverse.

And while recovery would be hard at first,
Each day would get a little easier. Day by day,
Your life would get more and more normal
And less and less isolated
And start to look more and more
Like the lives of your peers.
Opening up, becoming more expansive, less small
If you could only hold on and push through
The next few days and weeks.

And so you listened to me
You gazed through the fog of pain and frustration
Through the present agony of
Lack of control over your own body
And extreme lack of privacy,
And you gazed past
The threat of losing who you are
The threat of losing your sound body
The threat of losing abilities you have
And even the threat of death
And you firmly grasped the imagined future
That I painted for you
In bright, beautiful colors.
A future that you deeply and desperately desired
Like a man near death
Desires water in a parched desert.
And you lunged toward that imagined future
Despite the fact that that finish line
Lay beyond the seemingly insurmountable mountain
You were struggling to climb
Despite the fact that you were exhausted
Despite the fact that you
Believed you weren't strong enough.
To hang on and to survive and to keep going.

You rallied.
You took a deep breath and
Summoned your courage
And drawing from the deep well of strength
And optimism that has always been within you.
That is your strength
In being you,
You believed and reached out,
Grasping the hope
That lay just over that mountain,
And it propelled you
Through the hardest part of
This epilepsy surgery ultra-marathon.
And so, you succeeded
In fighting your way bravely over
That steepest mountain.

And were strong a little longer.
And longer still.  And even when you couldn't
Go on.  You did.
You endured.  Bravely.

You were amazing.

And that should have been the end of the story
You should have run across that finish line
And victory should simply have been yours.
And you should have had that
Expanding life.

But...
Oh, the irony...
How was I to know that
Life--which is always mysterious
In the things it throws at us
Was about to throw a hard curve ball
And make me into a liar?
And make you wonder yet again
At your bad luck...

How was I to know that a pandemic
The coronavirus.  Covid-19
Was even then--even when you were
Still in the hospital and then in recovery
There in that city and here in our own--
Breaking onto the world scene
So that, just as you were about to cross the finish line
And claim the prize
Of the beginning of a new life
A life which would slowly get more and more normal
Less and less isolated
And more like the life you'd dreamed of
That just then, that not you, but
The entire world would be thrown into an
Even more extreme form of the life you've lived
For the past several years?

A life of isolation
A life that is anything but normal
A life in which resolution is uncertain
A life in which the finish line
Is unable to be located yet in space and time.
And a life where medical emergencies and
The possibility of death threaten constantly
Without much in the way of warning.

And so, we continue.
In the way we were before surgery,
Except even more so.

Your life has NOT become more normal
It's become less normal

Your life has NOT become less isolated
It's become more isolated

Your life has NOT become more like your peers' lives
Your peers' lives have become more like yours.

And the surgery too has NOT been as successful
As we'd have liked.  And while some of your
Seizures are gone, the worst ones are still happening.
And we must watch you as diligently as ever
To keep you safe.

And so, you remind me often with irony
Of  what I told you in hardest January
Following on the heels of scariest December
When I said that you should not give up
Because the finish line was within sight.
And you tell me with sad irony
That here you are, having climbed that mountain
And come down the other side.
To find that the finish line is nowhere in sight.

That that finish line has picked up and moved.
Even further away than it was in January.
Far away.in the distance beyond
The unmapped Covid-19 mountain range.
And almost certainly even further than that.
The finish line likely lies over a second
And maybe a third mountain range.
Beyond another round of drug trials
And another round of pre-surgery testing
And maybe yet another epilepsy surgery.

The finish line always seems
To be moving further away
In this ultra-ultra marathon of epilepsy.
And this strange thing called life.

And so I sit here watching you
Watching you recover from yet another seizure
Despite your having climbed that mountain in January
Despite your surgeries.
Despite your having restarted your antiepileptic drugs

I'm watching you recover
From a seizure as we are in quarantine
In the midst of a pandemic.
That has isolated everyone
In the most un-normal of times.