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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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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DARK POWERS

Bright Lights: Roman and Rocky

Bright Lights: Roman and Rocky

DARK POWERS
By Scott Lew  7/3/13

Recently
The darkness in everything
And
The darkness in me
Feel closer
As the last of my muscles
Dissolve
The force
That keeps the darkness
Apart
Also weakens
I’m in-between
Feeling
The crush

Then
I’m snapped back
To fantastic
Reality

Roman uses me
As a lounge chair
And tells me about
The ice rock
That killed the dinosaurs
Rocky counts all five fingers
Playing with my limp hand
And tells me
I’m going to get better
Ann smiles
Despite everything
And
Bright light
Tickles my mind
Separates me
From
The darkness

Death
Makes so many
Simple things
Lifesavers

The last couple of times
I’ve seen my Dad
He’s admonished
That it’s time for me
To be at peace
With death
He feels the darkness too
It’s frustrating
Only to be able to
Blink out the words
“I am”
When I want to have
A big conversation
About meaning in life
And the narrow
But infinite
Nature of our existence
And how
Just having
Him there
Talking
About the heavy subject
Is one of those
Bright lights
Against
The inevitable
Crush
Of
Darkness

ALS is a terminal illness
And I’ve been to the brink
Many times
But feeling
The force
Of death
Tickles
When mixed with
Beautiful
Everything
So I’m going to
Keep on
Silently
Laughing

My Dad with Bright Light: Penelope

My Dad with Bright Light: Penelope

 

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Sexy Evil Reality

Not a poem this time, but a movie!

If you’d like to see the award winning short documentary about my process writing the movie, “Sexy Evil Genius” check out “Jujitsu-ing Reality” here:

http://vimeo.com/49352654

If you’d like to see the movie “Sexy Evil Genius”, you can rent it on Netflix, watch it on VOD, and rent or buy it at iTunes and Amazon.

Hope you enjoy them both!

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The Trick

When I was 21, I wrote this poem which I used to perform like a song at poetry slams.  Now that my ability to move is zero and just leaving the house is a major ordeal, the words mean so much more to me.  And so, 23 years later, I‘m posting it here.  Sing along!

THE TRICK
 a song  7/90

Rover Rover where you goin’
you know you got no where to roam
Remember kid you sold your shoes
to buy the propane rocket fuel
So where’s the rocket
and where’s your friends
The moon’s still way over head
The moon’s still way over head

Peace be with you
Peace be good
Brother find some brotherhood
Ain’t no golden magic roads
only brick and cobblestone
So where you
off to
off to
where
Far away
you’ll still be there

Marco Polo traveled east
Ambassador for a western king
Found some gold some silk some spice
Cat never found no paradise
So you can ask Columbus
You can ask Vasquez
Where’s the fountain
of youthfulness
Where’s the fountain
of youthfulness

Who am I if not a fool
Kept an open ear at school
Professor Gospel cried and begged
Us to question our own heads
Don’t need no boats
no rocket ships
Rover Rover
Learn the trick
Rover Rover
Learn the trick

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