Monthly Archives: July 2011

Dirty Little Secret

Dirty Little Secret
by Scott Lew 7/28/11

I admit
I fantasize
 about food
Crude and shameless
 but after 3 years of not eating
 taking nutrition
 from a can of paste
 poured into my stomach
 via gastric tube
I dream
 of chewing
Chicken wings
Swiss cheese and bacon burgers
Lamb chops
Oodles of sushi
Crab legs
Lobster tails
 with drawn butter
 and a sirloin steak
 on the side
I invent menus
 of fantasy meals
I would eat
 if I only had one shot
 at one more meal
Sometimes I say
 to my imaginary chef
 just surprise me
I replay
 buckets of mussels
 osso bucco
 even chopped liver
 from the past
 like movies
 with taste and smell
 in my mind

I long for
Crap food
 in Golden Corral
 Taco Bell
 and Long John Silver’s
Even the food
 that threatens to rip
 your dentures out
 in Polydent ads
 drives me nuts
And those on TV
 with heartburn
Just eat that corndog
 or spaghetti with meatballs
Take Tums
 and quit complaining
You don’t know
 how good you’ve got it

I think about
 which cuisine I would choose
 if I could magically eat
 only one
 for the rest of my life
Italian or Chinese
 are the usual winners
But sometimes
I get daring
 choose Greek
 or Mexican

It’s perverted
 how I torture myself
 with food
But I can’t escape it
I remember conversations
 with my wife
 over wine and cheese
 or our Sunday morning
Family dinners
My first job
 the world’s greatest hot dogs
Nights out with friends
Countless celebrations
 at restaurants
Life moments
 with food
I miss the joy
 of discovering
 a new yummy something
 like the ramen noodles
 at the Japanese grocery store
 or the duck
 at that French joint
 in the Farmer’s Market
And sharing that special knowledge
 with people I love

There’s no escape
 from those memories
I run
 but fall
Eaten alive
 by the delicious swordfish
 at that fun place
 we went
 in Santa Monica


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

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


by Scott Lew 7/5/11

Jackson’s a slugger
We met during an ALS fundraiser
 a baseball tournament
He was on the same team
 as my nephew Dillon

The event made me feel incredible
A couple hundred 8 year-old boys
 and their families
 playing a long weekend tournament
 to raise money and awareness
 for this tragic and rare illness

I had a special place of honor
 as the afflicted
 and Uncle
 of Dillon
 who made me so proud
 by winning the contest
 to raise the most money
 for the cause

I even showed up to the games
 in my Lou Gehrig #4 jersey
My wife Ann would sit me forward
 in my wheelchair
 so all the little guys could see
Lou Gehrig
 stitched on my back

Jackson won the home run contest
That kid can hit
The award was a top shelf
 brand new
 baseball bat
After the ceremony
Jackson’s dad walked him over to me
 to show me his prize and shake my hand

“You’re shaking hands with Greatness.”
Jackson’s dad told him
I was flattered
 by the excessive praise
But glad to be a part of this
 father and son bonding moment
I felt a sudden wave of emotion
 a realization
 that every cliché
 about sports building character
 in young people
 is true

So I was mortified
 absolutely leveled
 to hear
Jackson’s mom
 was recently diagnosed
 with ALS
Her speech is already slurred
 and she has trouble walking

I think back to that tournament
 all the awareness raised
 the cruel pitcher on the mound
And take a glimmer of hope
 that Jackson could knock those curveballs
 out of the park

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Filed under ALS, ALS Poetry, Lou Gehrig's Disease, Poetry