Welcome

I’m a 44-year-old guy who’s been living with ALS for 11 years.  Every once in a while, I write about it.  These poems are posted here, for your reading pleasure.  If you happen to have ALS, hope you find these scribbles uplifting.  Thanks for visiting my blog.

Sincerely,
Scott Lew

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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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My Leading Ladies, Olivia Wilde and Katee Sackhoff, take the Ice Bucket Challenge!

Olivia Wilde, star of Bickford Shmeckler’s Cool Ideas, takes the Ice Bucket Challenge with breastmilk! Yowza!

Katee Sackhoff, star of Sexy Evil Genius, takes the Ice Bucket Challenge Bob Dylan style!

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My wife, brother, and sons take the “ALS Ice Bucket Challenge!” Bravo!!!

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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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The Ice Bucket Challenge

My nephew, Dillon, who has played in countless baseball tournaments supporting the ALS Association has taken the Ice Bucket Challenge. I’m very proud of him for freezing his kazotskis off for ALS. Watch it at the link below.

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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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A GOOD NIGHT WITH ALS

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A Good Night With ALS

Last Thursday at The Hollywood Roosevelt Hotel, the ALS Association gave my wife and I an award for being inspirational people who fight ALS daily. This was our acceptance speech.

Ladies and gentlemen, generous supporters of the ALS Association, thank you and thanks to Ben Garant for presenting us with this award, and thanks to Mark Amin, David Higgins and Sobini Films for producing “Sexy Evil Genius” and “Jujitsu-ing Reality”. It’s a real honor and blessing for us to be here tonight to share this special moment with you. We would like to dedicate this award to my Mom, Tammy, who couldn’t be here tonight because of her own health reasons.

First of all, for the record, ALS totally fucking sucks. Just wanted to get that out of the way.

To put it in perspective, I look at myself in “Jujitsu-ing Reality”, which was shot only about two and a half years ago, and I think, look at that able-bodied guy. Sure, I was head-to-toe paralyzed, couldn’t speak or breathe without a machine, but I could still move my neck slightly, enough to use an on-screen keyboard. I wasn’t slack-jawed and drooling. My right eyelid wasn’t drooping, halfway closed. That is the nature of ALS. Just when you get comfortable with your level of disability, no matter how extreme, there’s always another muscle to lose.

First, you can’t walk, then move your arms, hands and neck, then you can’t eat, you can’t move your face or smile or laugh, then you can’t breathe and last to go is your ability to speak. All the while that your ability to interact with the world diminishes, your sense of wanting to reach out into it increases because your mind remains active and alert. It’s like being buried alive in your own body.

Sounds frustrating? It can be. Not just for you, but for the small army of people, saints and angels, it takes to keep you going.

So, why live? Easy. Life is beautiful. Every day is a chance to have fun and be creative. I get to see my four year old twin monkeys, er, I mean, boys, grow up, learn amazing stuff, and use me like a jungle gym. I get to see my wife smile, do her silly dances and wrestle with Rocky & Roman, our sons. I get to have my hands and feet licked by our dog, Penelope. The other day, I was in our backyard and I saw a hummingbird flying around our lemon tree. You just can’t enjoy life like that when you’re dead.

I’m just trying to paint a picture for you of what having ALS is like and why it is so important for you to support the ALS Association. Let’s find a cure for this horrible disease and help families afflicted by it.

It might be too late for a cure for me, I hope it’s not, but if it is, I would love for my epitaph to be, “He was the last person to die from ALS.”

Thank you. Thanks to my wife, Annabel, for reading this speech. And thanks to the ALS Association for this award.

 

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