Category Archives: ALS Poetry


Bright Lights: Roman and Rocky

Bright Lights: Roman and Rocky

By Scott Lew  7/3/13

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

I’m snapped back
To fantastic

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
Bright light
Tickles my mind
Separates me
The darkness

Makes so many
Simple things

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
About the heavy subject
Is one of those
Bright lights
The inevitable

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

My Dad with Bright Light: Penelope

My Dad with Bright Light: Penelope



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:

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!

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

The Bath

The Bath

By Scott Lew

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
in my chest and arms
Warm water
My body
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
That whatever happened
I would face it
and I would be okay with it
when I made that deal
with myself
I felt an overwhelming lightness
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
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


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


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
It hasn’t all been fun
But it has been
The perspective
As I devolve
And every little thing
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


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

Power of Observation

Roman & Rocky using their 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
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

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




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


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
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


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

My Fluffball Nurse

Thought this photo didn’t need a poem to explain it. 

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

On Being Around

by Scott Lew

They like boobies
 and birthday cake
 tub time
 and Humpty Dumpty
Two years old
 and they’re already fans
 of Simon & Garfunkel
 Justin Beiber
 and cheesy Japanese TV monsters
They amaze me
 with words like
 and elephant
They’re interested
 in poop
 and privacy
 and always want to know
 what happened
 who’s there
 and why
They giggle
 from their toes
 like there’s no tomorrow
And cry
 from their hearts
 for more pizza

It’s impossible
 to describe the joy
 they give me
By just saying
Using me
 like a couch
 or jungle gym
Hearing their feet
pound the floor running
Or their voices
 call each other’s names
It’s reason enough
 for being

One night
 they found a stethoscope
 listened to my heart
 like little mad doctors
It was proof
 I was there


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

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
 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

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

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