Tag Archives: Scott Lew ALS Poetry

Double Whammy Horror Story



The windows into my soul

The doctor was grim
She had horrible news
I had dry macular degeneration
An incurable disease
Of the retina
It was causing my blurry vision
And in five to ten years
Could cause blindness
I was one of the youngest people
To whom she had ever
Given this diagnosis
I think she expects a bigger reaction
But I’m sitting in a wheelchair
Unable to move
My arms and legs
Taking sips of air
From a ventilator
Looking nonplussed
My wife explains
I’m already four years into a disease
That has a life expectancy
Of five years
Dry macular degeneration
Will need to get in line
Behind the big baddy
Plaguing me
Lou Gehrig’s disease
I think the doctor was relieved
Not to have a hysterical patient
In her exam room
And she was right
That was nine years ago
On top of only
Being able to move
My lips and eyelids
I’m almost
My vision is bad in both eyes
With spots where everything looks
Like squiggles in a fun house mirror
And bright lights
Hover in discs
And sometimes shoot like stars
Across my field of view
My right eye is stronger than my left
But ALS has weakened my right eyelid
So I can only open it
With great effort
Imagine the odds
Of the same person
Getting double whammied
By two very rare
Neurological diseases
If there was a genetic lottery
I would have won
A billion dollars
I’m that lucky
I feel buried alive
In a sarcophagus
Of my own body
But just when
I want to give up
I hear my boys
Returning home
From their latest adventure
“Hi daddy!”
Their voices ring
Like bells
Calling me
Back to



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Roman, Rocky, and me

This picture of Roman and Rocky smiling with their dead dog skeleton toy in front of me inspired this poem. Don’t they look adorable?


I die
A few billion years later
The Sun dies
And taking all of humanity
Remaining in the Solar System
With it
A few trillion years later
The Universe
The Big Crunch
Possibly creating
A new Big Bang
And with it
A new Universe and possibly
A new me
I won’t know
I’ll be gone
Like the Universe
Just being able
To imagine
Makes me feel
In death
To every living


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Letting Go

The nurse pulled about fifty small dolls from a dryer under the sink
Which I hadn’t noticed was there
She clutched them gingerly to her chest
Making sure not to drop a single doll
As she prepared my food and medication
I saw
On the counter
Two little people
A cartoonish man and lady in a dress
Who were having a violent argument
Then they would make out
Kissing passionately
Then they would stop
Start over and repeat
The routine again and again
I saw the shadows of what looked like muppets
Having a conversation
I could not hear
Fantastic purple birds
Were flying in and out
Taking perch in tree branches
That would suddenly appear
The cables around me
Of which there were many
Would explode
Into graffiti bombs
Of squiggly lines
Then go back to normal
And all of this insanity
Was going on at the same time
I had a flash
My nurse was evil
That she slipped LSD in with my food
But then I saw her
On her back on the floor
Trying to kick a man off of her
Who was tickling her
While she continued to hang on
To all those crazy dolls
I realized I wasn’t drugged
I lost my mind
I couldn’t move a muscle
I couldn’t make a sound
And my grip on reality
Had been shattered
I was terrified
It was my brain telling me
I was going to die
I had been hospitalized seven days
For a mystery infection
That stopped me from being able to pee
And turned my blood septic
Not sleeping
But taking two different kinds of sleeping pills
Skipping many meals
Because the nurses were too busy or tired or confused
To feed me
I was kept in painful stress positions for hours
Then moved into a different
Painful stress position
Any time I would try to communicate with a nurse
They would think I was agitated
And shoot me up with
Morphine and Xanax
I was crumbling from the inside
But because I couldn’t move a muscle
I couldn’t make a sound
Nobody knew
Except my wife, savior and guardian angel
Who didn’t know I was seeing
Puppets, dolls and birds
But could sense I was in trouble
She went through Herculean effort
To bring me home
That day
Ironically it was
July 4th
She saved my life
Now I face a new reality
Funny as it sounds
Or not
I am too sick to be in a hospital
If I get another infection
I will need to
Ride it out at home
And if I die
I will not move a muscle
I will not make a sound
But thanks to my guardian angel
I will have peace of mind


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Me, Enjoying the Ride

Me, Enjoying the Ride

I wore this body out
Past walking
I wore this body out
Beyond being able to
Move my
Arms hands fingers
Legs feet toes
Shoulders neck head
I wore this body out
Can’t laugh
Can’t smile
Almost no ability to show emotion
Except cry
A strange substitute
For laughter
I wore this body out
Exceeding my expiration date
Of five years
By eight
Thirteen years of muscles melting
I wore this body out
Lost my sense of smell
When I got trached
Lost my vision
When my eyelids stopped cooperating
The left won’t close
The right won’t stay open
I’m slack jawed
And drooling
Like a harmless zombie
I wore this body out
Until my tires had no more tread
Or rubber
Or even tires
I wore this body out
And had great fun doing it
Got to make some movies
Inspire some folks
Feel immense love
And joy
And loss
Got to see my boys
Grow from babies
To people
With hilarious adorable minds
I wore this body out
And there will be
No crawling from the wreckage
Only enjoying
The ride


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Test of the Pest

The fly landed on my left eye ball
Glopped around
I could feel the tension
In its six legs
And it’s tiny mouth
Nipping at my cornea
It loomed gigantic
So close to my pupil
I can’t move
So I couldn’t shoo it away
I can’t close my eyelid
All the way
I can’t even make a sound
When I’m lying down
I laughed
This is how
It would feel
To be dead
In the face
Of what would drive the living
After what seemed like
An eternal
The fly flew off
My nurse turned
Saw a subtle
Expression of fear
And disgust
Asked if I was ok
I quivered my lip
Which means


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I met The Man

I met The Man
by Scott Lew

We ambushed him
 after a lecture
 in the basement of an auditorium
 at Cal Tech
My wife
 made my meeting him
 her mission
 after I got diagnosed
Stephen Hawking
 who I said
 beat ALS
 with his mind
She wanted me to be inspired
 in the presence
 of this genius

I remember the life in his eyes
 behind a frozen mask
His face
 unable to move
His expression
 impossible to discern

I told him
 how much I enjoyed his presentation
But even though I’d gotten an “A”
 in college Astronomy
 I barely understood half of it
It took him several minutes
 to type with blinks of his eyes
“Hello. Thank you for coming to my lecture.”
All that effort
 for the most simple greeting
He had to climb walls of ice
 that encased him
 just to say “Hi”
I thought
Writing one of his books
 must be like running
 an Iron Man marathon
This guy has tremendous patience
 and willpower
He was small and twisted
 with zero musculature
 but he was rugged tough

I felt a brief connection
 when I told The Man
 I wanted to be him
 not in science
 but in Hollywood
And even though he couldn’t smile
 I felt him

His wife took my hand
 which at the time
 I could still move
 but not lift
She looked down at me
 in my wheelchair
And said
“It’s great to meet someone
 at the beginning of their journey.”

I looked at The Man
 and realized
Even though I’d lost so much
I still had a long
 long way to go

8 years later
I see photos of myself
 where I thought I was smiling
 but I’m blank-faced
I mouth simple words
 and people recoil
Because my frozen face
 makes me look
 angry or alarmed
When I’m excited
 I look bored
When I’m in pain
 I look placid
But the ice has not yet
 fully set
I can still move my mouth
 a bit
 turn my neck
 furrow my eyebrows
 click my tongue
 that fade
 with each
 passing day

I think back
 to those few inspirational moments
 when I met The Man
 behind that frozen mask
And saw my future
 if I can just hang on
 and be rugged tough
 as him

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Filed under ALS, ALS Poetry, Lou Gehrig's Disease, Poetry, Scott Lew, Stephen Hawking, Stephen Hawking ALS