Fuck ALS
Photo property of the author.
WHAT NEUROLOGICAL DISEASES DO TO THE SOUL…
Fuck ALS
A Story That Will Break Your Heart
One day, after sailing from L.A. to Catalina,
Aunt Clara stood in her galley, shook martinis and poured.
She joked, if I’m ever in a wheelchair, shoot me or shove me off a cliff.
One like that, pointing to the highest peak on the island.
Never thinking for a minute it would come true.
But it did. You know how things go. Or do you?
Are you ready to hear a story that will break your heart?
It’s fatal, doctors don’t know why it happens. Well shouldn’t they? By now?
I know one thing: it’s a sneaking slow-moving thief, a wretched robber.
Who stole my aunt away. Little by little. Dignity and all.
First her gait: she’d shuffle, then stumble. One foot in front of the other,
The rhythm gone. Then that unwelcome wheelchair.
But not fast. Oh no, not one ounce of mercy.
The Mayo Clinic told her some people live one to four years.
But she defied the odds. And lived twelve years.
Every month losing more muscle control.
Being spoon fed like a baby seemed like the worst.
But it wasn't. Deterioration marched on like Sherman to the sea.
And she’d “not go gentle into that good night.” She raged.
When she still had a voice, she said: “Fuck ALS!”
Grammy didn’t like it when she swore. But I’d have said it too.
I see her tan muscled legs climbing a thirty foot mast.
Against a mottled sky of grey and white.
Sheets of salt water dousing the decks.
She’d grab the helm with strong deft hands. Complete control.
Always holding course. The captain of her ship.
How many of us can say that?
After the tracheotomy, she couldn’t speak. I became her voice.
That hideous hole in her throat, which made me feel sick if I looked
While suctioning to clear the mucus. I hate that word. But my God!
That sound of sucking phlegm was worse. You’d have to hear it. No,
I hope you never do.
Before her fingers turned rigid she typed: “Fuck ALS.”
A tinny computer, with a Japanese accent, recited what she wrote.
Over and over she pushed enter. The mechanical voice droned two words.
You see a decrepit woman slumped in a wheelchair. She’s barely fifty.
STOP looking at her with forced pity. You’re thinking: I’m glad it’s not me.
I know it. I’ve thought it too, when wiping spittle from her chin,
When hugging her and the scent of feces hits me.
I’m ashamed for pulling away. But the stench is stronger than I am.
STOP talking to her in that loud voice as if she’s a deft child.
Her brain is perfect. Stephen Hawking had it too, remember?
I want to scream at you and shake you for staring.
Until you see THIS IS A PERSON; but with the frozen face, gnarled fingers
And curled up toes. How would you know?
Oh! But she was a classic beauty, angular features with huge brown eyes.
Bravery personified. Sailing to Hawaii, guided by the stars with the sextant
In her hand. How can I tell you how funny she was?
Or of the women she loved?
That she jumped horses over five foot fences.
Nothing short of regal in her equestrienne jacket and jodhpurs.
You see a blank face, not her unflinching poker face.
She taught me how to sail, to play cards. To be courageous
When people die young.
I remember that morning we sat together on Mom’s front porch,
Her arm around my shoulder when her sister, my mother died.
I was twenty-nine. We gave each other strength. She was my favorite aunt.
I say Fuck ALS. If you knew me, you’d know I don’t use use words like that.
A blurred picture, but it captures the theme of this poem… a long time ago. Photo property of author.
