A Short Dance With Duchenne
By Deborah Robins
For forty full phases of the moon, he knew God.
He wriggled happily like a maggot child in a marsupial pouch,
And dreamed to a slow bass drum that made him forget
His own quick pulse….his separateness.
He could have stayed forever there,
But they said he was late;
That they needed the bright white room
And the funny little bed with only boards for mother’s legs,
For other women.
He did not like the bitter sap that stung her soft walls and
Pushed him away,
And he cried for equilibrium lost.
Auf Wiedersehen sweet belly.
For five short years, he knew a carefree life.
He grew like a plump peach and belonged to the race of children
Who ran and swam and called over their shoulders to him.
He would have stayed for longer but the spaces grew wider.
Angry faces said, “Hurry up. We are always waiting for you.”
He stumbled in the races so that he didn’t have to finish.
He grew sly and found more tricks
That would save the hot flush of his face.
The doctor said, “Now hop….now skip…now get up from the floor…
That’s fine…. That’s very good”. Was he blind?
But his mother and father cried for days.
And there were more games with doctors and less with friends.
None of them asked him to dance.
His father sold his bike and he felt his mother’s body often in his bed.
Auf Wiedersehen brief childhood.
When a hundred yards seemed like a merciless wasteland, And a flight of stairs like a mountain,
And his voice grew hoarse from shouting at the backs
Of diminishing youths….. he surrendered.
He was strangely grateful for the gleaming wheels
Which catapulted him back and forth.
And for a time, it was grand to call over his shoulder to them!
But there were still mountains…and medicines… and treatments…
And a breathlessness without the dancing.
The hum of motors invaded even his sleep
Until he was too tired to wake…even for mother’s crinkling eyes,
Even to return his father’s taunts,
Which were the leather scented upholstery
Over a hard board of love.
At nineteen, they buried my nephew
In a deep belly, between two ninety-year-olds.
In the wind whipped distance, I thought I saw a toddler with white hair,
Thrusting his hips oddly and writhing in pleasure to phantom strains.