Category Archives: ALS Poetry

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

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

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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The Bath

The Bath

By Scott Lew
12/11/12

A few months before
I was diagnosed
But when I knew
in my gut
I had ALS
I took a bath
to relieve the muscles
Twitching
in my chest and arms
Warm water
Relaxed
My body
Settled
My mind
into a meditative state
I thought about
The horrors
that would soon
overcome me
And just decided
in one of those
Rare moments of clarity
Epiphany
That whatever happened
I would face it
and I would be okay with it
Instantly
when I made that deal
with myself
I felt an overwhelming lightness
Tranquility
Lift me up
My entire essence of being
in harmony
It was like I was floating
in the bath

And that feeling has lasted
To this day

When I’m upset
because I can’t hug my kids
or play monsters with them
or sing the Birthday Song
I think back to the bath
and I’m okay
When I’m craving food
which I haven’t eaten in years
When I long to be part
of the conversation
or just make a silly joke
When I can’t smell
That thing
Everyone says smells so great
When I wish I could
Dance with my wife
or just linger over wine and cheese
like we used to
When I try to make an expression
but nobody can read my face
When just thinking about my breathing
being totally dependent
on this delicate machine
Freaks me out
When I’d like to leave
My house, chair, bed, vent, suction machine
Behind
and just take a walk
But it’s not possible
When my feet itch
Or a bug is crawling
on my face
Or my head falls
and I can’t pick it up
When I want to scream
but I can’t even utter
the slightest whisper
I go back to the bath
Feel that moment
Remember that bond
I made with myself
the serenity that followed
and I’m okay

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

25%

By: Scott Lew 9/14/12

 It occurred to me
As I hit my 44th Birthday
And start my 11th year
Living with ALS
That I’ve spent 25%
One quarter of my life
Under the specter
Of this challenging illness
Surprise
It hasn’t all been fun
But it has been
Enlightening
The perspective
As I devolve
And every little thing
Everything  
Becomes more intense
That’s enjoyable
But Death
Sitting on my chest
Teasing me not to breathe
Is annoying
Most miraculous
My wife
Without whom
I would be dust
Has lived with IT
For over 80%
Of our marriage
And she still manages
To smile
I’m the Luckiest Man

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

Power of Observation

Roman & Rocky using their Powers of Observation

POWERS OF OBSERVATION

By Scott Lew 7/3/12

It’s hard to describe
No muscles
The tomb
Of your own body
Longing to reach out
Laugh
Smile
Respond
In some sensible way
When friends talk to you
Because they know
You’re in there
 
That’s the hardest part
Not being able to react
Life happens
But I’m at the bottom
Of a well
Sending up the occasional
Hellooooo!

 I still have sight and sound
Touch when someone
Touches me
Smell and taste
Are rare pleasures
Yet surprisingly
Just being present
And observing
Thinking  
Is enough
To have
A rambunctious
Experience with
The Universe

 

 

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

INSPIRATION

Grandma Tammy’s got soul
And Parkinson’s
And extreme arthritis
And a metal brace fused on her spine
Crumbling bones and torn muscles
And more pain
Than you can possibly
Imagine
But when grandson Roman
Wants to play toy guitars
She jumps up
On wobbly legs
And jams
Like Johnny B. Goode
She won’t let a little thing
Like all those things
Stop her from enjoying
The moment
I can’t talk
But I was yelling
In my mind
Rock on Mom
Rock on

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