ALS Trilogy
ALS I: NIUZI
Carl “Niuzi” Nibaum, police reporter.
One of the best. Surely the most ruthless.
Lying flat during stakeouts, camera pressed to his heart like a respirator,
bracing for the flash of blue that meant the hunt had peaked.
Sneaking into drug dens to interview the scum.
And back at the studio, Niuzi’s soft baritone hypnotizing the viewers,
drawing them into dark side of the moon,
where crime and passion make love.
Then came the tremors.
The missed keystrokes.
A dropped cup.
Fatigue, thought Niuzi. Too much night.
“It’s ALS,” shot the doctor. Right between the eyes.
ALS II: DEVICES
An educated man, Niuzi immediately figured out:
it’s over.
The action. The rush.
The fame. The women.
The money.
The newsroom ink, the mumbling scanner,
smartphone flashes: I’m on my way.
He read: degenerative. locked-in syndrome.
To maintain dignity, people go to Dignitas.
But Niuzi hated the Alps and the cold weather,
and being told what he is.
His colleagues insisted:
“Fuck it, Niuzi, it ain’t over till it’s over!
So you’ll speak in long sentences, who cares?
It’s not like you’re replaceable.”
So Niuzi, always adventurous,
went along.
There were numerous devices, and
Niuzi got them all.
He spoke eye-tracking
moved head-tracking
cashed all his earnings from voice banking.
He persevered.
And every so often, he would wink:
“Hey, I did make the news.”
ALS III: RUST
Away from News.
The Negev desert stretches ahead, as my dusty jeep
roams the roads, cutting through a mix of ochre, heat,
and serenity.
Movement, my patients teach me,
is never to be taken for granted.
Dvora is waiting for me beyond that ridge.
Here, the house
with the metal roof, distinct satellite dish,
and the eucalyptus tree, curating
a secret code.
Getting out of the car, I notice
my body is soaked with sweat and dust,
though my mind is empty.
I very (!) rarely do home visitations,
but this feels more like pilgrimage.
“Hey, doc,” Moshe, her husband,
gardening ferociously,
refraining eye contact, as always.
But Dvora doesn’t.
Through the eye-tracking device I collect every blink,
vocabularizing every node.
She loves him so much, she
misses his body. But I am
prohibited from letting him know.
I may confide in the eucalyptus tree, though.
“Bye, Moshe,” I utter
on my way out and into the jeep.
Still gardening, he launches a wave of trust.
I am thinking
how brave it is for Niuzi to broadcast on the illness’ head,
how brave it is for those departing to Dignitas, on their own terms,
and how courageous it is, on Dvora’s part, to keep on loving
and send me back home with fortitude, and rust.
Golan Shahar is a Professor of Clinical–Health Psychology at Ben-Gurion University and Adjunct Professor at Yale University School of Medicine. His work bridges clinical and health psychology, psychoanalytic and existential theory, and poetic narrative. He has published extensively on depression and suicide, chronic illness, and stress, and has authored two books. His poetry, written both in English and in Hebrew, explores subjective, health-related experience, psychological suffering and resilience, and the interface between persons and their social environment, particularly in the context of health and medicine.
