Tag Archives: ALS

THIS BODY

Me, Enjoying the Ride

Me, Enjoying the Ride

I wore this body out
Past walking
Talking
Eating
Breathing
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
Silent
Motionless
Trapped
Thought
This is how
It would feel
To be dead
Unflinching
In the face
Of what would drive the living
Mad
After what seemed like
An eternal
Eternity
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
Yes

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Tom Lennon Takes the Ice Bucket Challenge

Good buddy, Tom Lennon, took the Ice Bucket Challenge in his famous Officer Dangle shorts. Yow!

http://youtu.be/qwcufo72zyk

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Scott “The Rock” Lew

Scott “The Rock” Lew
or One Of The Myriad Possible Ways I Got ALS
6/30/14 

The whole gym stopped
 and gathered around the boxing ring
 to watch us spar
The Club Stud
 had 3 inches
 15 pounds
 and years of experience
 over me
He usually kicked my ass
 but I really enjoyed fighting him
Not that I’m a masochist
 but the old adage
 to get better
 you need to fight guys
 who are better
 than you
 is true
Shocked at the crowd we’d drawn  
I said to the guy
 lacing up my gloves
Looks like everyone
 wants to watch The Stud
He said
No, man, they want to watch you
Why? 
You take his best shots
They were lined up to see
 The Tomato Can
 who I just learned
 was me
 take a beating
 and I didn’t disappoint
I got clobbered for two minutes
 noticing for the first time
Oohs and aahs from the crowd
Then, I ate a giant right
 right on the chin
The crowd howled
He’s still standing
 a surprised spectator exclaimed 
I barely felt it
 was in a zone
 wanted to keep sparring
But Father Pat
 the English Catholic Priest
 who bore a strong resemblance
 to Friar Tuck
 our coach and referee
Jumped in and broke us up
 over my
 in retrospect
 ridiculous
 protest
He led me to a corner
Sat me down on a stool
 asked me
 what year it was
I giggled at the silly question
1986
Father Pat waved his hands above his head
This match is over! 
It was 1989
He told me I couldn’t spar for 2 days
 and walked over to raise the arm
 of the winner
Oddly, I also received
 many back slapping kudos
From excited onlookers
 for the pummeling I took
You’ve got a chin, man
You’ve got a chin 

When I think about how
 I got ALS
I think about that afternoon
 and many afternoons like it
 and how the sport of boxing
 builds character
I could also point
 an atrophied finger at
Bad genes
Many episodes of food poisoning
Many bouts of high fever
Exposure to toxic
 metals and chemicals
From high school jobs
 I should’ve never taken 
Pollution in the environment
 in the town
 where I grew up
Which has a high number of people
 with ALS
Including my next door neighbor
 which is extremely rare
Almost statistically impossible
Considering only one in 75,000
 get the disease
And the place I grew up
Only has 45,000 people
And she lived next door!
It can drive you crazy
 trying to figure out
 how you got a disease
 with no known cause
But I like to think
I got ALS
 because I was just
 too damn tough
 for my own damn good
I’ve got a chin, man
I’ve got a chin

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Happy 75th Birthday, Dad

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Happy 75th Birthday, Dad

The greatest gift
 a Dad
Could give his son
 who has ALS
Is to teach him
 how to use
 appreciate
 expand
 his mind
Because when
 every muscle fails
 the mind
 is all that remains

You taught me
 by example
I was amazed
 at a very young age
 just how much
 stuff
 you knew
Seemingly everything
 about everything  
From politics
 to plumbing
From photography
 to electricity
From fine woodworking  
 to the financial
 inner-workings
 of corporations
You not only had
 a love for music
You built your own
 top of the line
 speakers
 by hand
 to maximize
 your listening
 experience
No other Dads did that
 and I noticed
 and tried to
 emulate you
 and cultivate my own
 interests

So to the guy 
 who is 
 the most curious
 learner
 whose hobbies
 are endless
 whose favorite thing
 is talking with someone
 who knows more
 about a subject
 he’s interested in
 than he does
To my Dad
 who likes to tell
 long stories
 which always have
 surprise endings
 and are full of
 bad
 excellent
 puns
To my Dad
 who’s beautiful mind
 inspired me
 and gave me
 the mental strength
 that saved
 my life
Infinite cheers
Happy75th Birthday
I love you

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I Was A Mummy For Halloween

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Rocky, Roman and Me as Mummy

 

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Rocky, Roman and Me as Mummy

By Scott Lew 11-12-13

I was a Mummy for Halloween
First thing in the morning
I gave my kids a scream
Rocky said I was cool
Which made my heart drool
I was a ghoul who was cool
Said my son, he approved
Roman said I was so scary
I’d frighten trick-or-treaters 
They’d all run away
Back to homes
They thought would be safe  
But in my wheelchair
I’d crash through doors
And scare them some more
That was Roman’s way
Of saying I looked great

Halloween looms large
My kids favorite, by far
And it made me feel glee  
To be
Part of their memory
On that spooky holiday  
Most alive
Ironically  
As the undead
Both my boys said
I filled them with dread
Daddy was scary and cool 

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An Inspiring Time At Beverly Hills High

Last Tuesday, I had the pleasure of screening Jujitsu-ing Reality for the students at Beverly Hills High School.  It was a great experience.  They asked me the following questions, which my wife answered for me, but I thought I’d take a swing at them myself.  If you’d like to see Jujitsu-ing Reality, a short documentary about my writing process with ALS that amazingly has been put on the list of possible nominees for this years Oscars, click this link: http://vimeo.com/49352654 

  1. How did you get past the initial shock and sadness of being diagnosed with ALS to be able to move on?

 I had no choice.  It was a reality I had to deal with.  It is like getting hit by a sucker punch.  You can get up or stay down.  By far, it’s harder for my wife, parents and friends to deal with.  They have ALS with me.  But they have it by choice.  They weren’t diagnosed.   

  1. Aside from the negative effects this has had on your life, have any positive things come out of it?

 I appreciate each day as if it could be my last.  Every moment is an opportunity to experience something beautiful.  I didn’t appreciate that as much before I had ALS.    

  1. What motivates you to keep pushing forward, despite your physical and emotional hardships?

 Above all, I’m motivated by my 3 year old twins, Rocky & Roman.  They make me want to get up and face the day.  I love seeing the world through their fresh eyes. 

  1. How has ALS affected how other people treat you?

 Great question.  The biggest thing is that it is very hard to communicate with me.  That makes even simple conversation impossible sometimes.  The funny thing is that people often talk to me really loudly like I’m deaf, but my ears are one of the few things on my body that work. 

    5. When did you know that you wanted to be a screenwriter?

 When I was about 18.  I just got the writing bug and never stopped. 

  1. How has ALS affected your style of writing?

Stylistically, I haven’t changed.  I’m still the same guy, deep down.  I guess. 

  1. How has ALS changed your attitude in life?

 It has reinforced my natural tendency to be ridiculously optimistic. 

  1. What one piece of advice would you like to give to our students?

 Be aware.  Explore.  Listen to your heart.  Work relentlessly to pursue your dreams.  And, don’t forget to have fun.  

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REFLECTION

REFLECTION

by Scott Lew 9/20/13

When I was just a gimpy guy
 in a wheelchair
 with a smile
 and a palpable positive attitude
Strangers would come up
 tell me their life stories
Friends would confide in me
 secrets
 they never told anyone
I appealed to healers and heretics
 the interesting and possibly insane
Everyone
 wanted to talk
I was a mirror
 in which they could see
Themselves
 reflected back
 from my most mortal
 point of view
Strange comfort
I was an accidental oracle
It made me feel good
 helpful 
 needed 

Then I got trached
 and I lost my ability
 to talk
Soon after
 my facial muscles
 atrophied
I couldn’t smile
 not even with
 my eyes
People no longer saw
 their reflection
 in me
They saw
 a blank void
And they stopped
 talking
 stopped
 approaching
Even my closest
 friends
I’m still the same guy
 but now I’m like a black hole
 absorbing everything
 reflecting nothing
And I get it
Who can look
 into a black hole
 without being
 disturbed
But it’s not that
 I’m a pariah
When people do
 brave talking to me
They’re amazed
 I’m still all
 there in there
I try to make them
 laugh
 by blinking out
 one word
 jokes
Croutons
And my boys know
 I say “yes”
 by blinking
So they’re always
 looking into my eyes
 and I get to get
 lost
 in theirs
Profoundly
 connected 

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Near Death Experience

Near Death Experience
by Scott Lew 10/4/11

There was no alarm
 only the faint hiss of air escaping
 from a disconnected cord
I lay there
Suffocating
 wondering why
 no alarm
My wife and the nurse
 couldn’t hear my silent pleas
 or see my fear
 because I have so little ability
 to make sounds
 or facial expressions
My wife left the room
I made clicks with my tongue
 but the nurse was busy dressing me
 didn’t pay attention
Then came the grey fuzz
This is it
 I thought
This is how I die
I thought
 about my kids
 my wife finding me
 burdened with
 breaking the news
 of my death
The nurse putting pants
 on a dead guy
He wouldn’t even notice
 I was gone
 until it was too late
 because my body
 is already so lifeless
I could let go
I thought
Get lost in the flashes
 of my life that was
 riffing in my mind’s eye
Then Ann came back in the room
 realized something was wrong
I was grey turning purple
But there was no alarm
That’s when the nurse noticed
 the disconnected cord
Plugged it in
I heard a pop
The pow of things coming back
The fuzz was gone
I could feel my heart
 which was pounding
 start to slow
My emergency
 was over

It was a wake up call
I live so near death
 dependent on
 these fallible vents
 and flimsy plastic cords
 to breathe
I’d gotten so comfortable
 living so close
 to the edge
I forgot I was
 there

The next day
I stayed in bed
Relaxed
Let my kids jump all over me
Tried to give Ann
 room
 to de-stress
She had been to the edge
 with me
It was a good day
 there were no alarms

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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
 savoring
 swallowing
 devouring
Ribs
Chicken wings
Swiss cheese and bacon burgers
Lamb chops
Pizza
Oodles of sushi
Oysters
Crab legs
Lobster tails
 with drawn butter
 coleslaw
 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
Eating
 buckets of mussels
 osso bucco
 lasagna
 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
 commercials
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
 Deli
 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
 breakfasts
Family dinners
 lunches
My first job
 making
 the world’s greatest hot dogs
Nights out with friends
Countless celebrations
 at restaurants
Life moments
 consummated
 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

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