During the early stages of the disease I rode a roller coaster of emotions as each new symptom seemed to directly correspond to an additional weight placed on my shoulders.  Sometimes this added weight would hardly be noticeable, while other times it would feel overwhelming and I would usually vent first and then have a good cry. On one such occasion my eight-year-old daughter, Ariana, came into our bedroom and asked, “Have you been crying, Dad?” (more…)

Even as a child,
Amidst frog hunting and acting out Peter Pan,
I noticed the way you fold yourself
At dinner parties or restaurants
When people we used to know
Tell you they are sorry
I have always watched how you smooth out your edges
And explain to them all you have gained from this
Fold into an immaculate paper crane so they don’t see you shaking

But in our kitchen
The creases stretch across you like power lines
Linking places that can’t hear each other anymore

I know what it’s like to play pretend so well
You start to believe yourself
But the disconnect is obvious
Brain signals caught in static of your limbs
The tremor casting a thick shadow over your right side:

The disease was a tattoo you hid from me
Was this indelible ink spelling there is no escalator back up
To where you came from- this is a one way street
You cannot go back to the body you had

The day you hit pause
You brought me to your parents’ house
Told me you had gotten sick but lucky
Hid the snow globe settling in your sternum

The year your handwriting went
I was this little beaming votive
Still believing the doctor when she told me
You were not a question that would go
Unanswered

The year you stopped teaching from teaching
I was the spark plug
Picking the glow in the dark stars
From my ceiling
Angry about all the wishes I’d wasted
About losing something I could still see—
I’m not burning anymore

I am nineteen now
Do not try to paint this canvas
With more colors than your pallet has
I know there are days when you wake up
Like an anchor at the bottom of your bed
Weighted by the memory of easy it used to be to sit up

Your body is the house that never got rebuilt
Your body is the ninth ward
Is a coat hanger
Is this lead pipe dragging

And I wish every adoringly unimportant home video
You shot of me was of you because
Some days I can’t remember how you looked
How you spoke, the precise angle of your voice
The whip your tongue
Before your mouth was a floor scattered with child’s toys
Before you could speak without tripping
How you smiled, told me stories
Laughed from the floorboards of your stomach

I am old enough to know now
To see this origami for what it is
So tell me where it hurts, tell me this is not the place you expected to tear
And I will hold you, delicate as insect wings
And tell you that
In the final days of your life
When the inanimate object of body
Will not permit you to move
Will not allow you to speak
I will be your voice
When the doctors call you an invalid
Or a vegetable
I will yell over the machine beeps
That you have become an endless conversation
With God
You have unfolded
And are not made of paper anymore
And your body is a just shell
That is finally too small
To hold you in

The most important lesson I learned in twenty-five years of teaching was my students were capable of teaching me lessons as valuable as the ones I taught them.  On occasion, a student shared wisdom that would cut through years and hold a candle to the seeming darkness.  One such gift came from a young woman who was a sophomore at the high school where I taught.  (more…)