Tag Archives: ALS poetry

Connections

Roman, Rocky, and me

This picture of Roman and Rocky smiling with their dead dog skeleton toy in front of me inspired this poem. Don’t they look adorable?

Connections

First
I die
Then
A few billion years later
The Sun dies
Collapsing
And taking all of humanity
Remaining in the Solar System
With it
Then
A few trillion years later
The Universe
Dies
The Big Crunch
Possibly creating
A new Big Bang
And with it
A new Universe and possibly
A new me
I won’t know
I’ll be gone
Like the Universe
But
Just being able
To imagine
This
Makes me feel
Alive
Connected
In death
To every living
Thing
Throughout
Eternity

12 Comments

Filed under Uncategorized

Letting Go

The nurse pulled about fifty small dolls from a dryer under the sink
Which I hadn’t noticed was there
She clutched them gingerly to her chest
Making sure not to drop a single doll
As she prepared my food and medication
I saw
On the counter
Two little people
A cartoonish man and lady in a dress
Who were having a violent argument
Then they would make out
Kissing passionately
Then they would stop
Start over and repeat
The routine again and again
I saw the shadows of what looked like muppets
Having a conversation
I could not hear
Fantastic purple birds
Were flying in and out
Taking perch in tree branches
That would suddenly appear
The cables around me
Of which there were many
Would explode
Into graffiti bombs
Of squiggly lines
Then go back to normal
And all of this insanity
Was going on at the same time
I had a flash
My nurse was evil
That she slipped LSD in with my food
But then I saw her
On her back on the floor
Trying to kick a man off of her
Who was tickling her
While she continued to hang on
To all those crazy dolls
I realized I wasn’t drugged
I lost my mind
I couldn’t move a muscle
I couldn’t make a sound
And my grip on reality
Had been shattered
I was terrified
It was my brain telling me
I was going to die
I had been hospitalized seven days
For a mystery infection
That stopped me from being able to pee
And turned my blood septic
Not sleeping
But taking two different kinds of sleeping pills
Skipping many meals
Because the nurses were too busy or tired or confused
To feed me
I was kept in painful stress positions for hours
Then moved into a different
Painful stress position
Any time I would try to communicate with a nurse
They would think I was agitated
And shoot me up with
Morphine and Xanax
I was crumbling from the inside
But because I couldn’t move a muscle
I couldn’t make a sound
Nobody knew
Except my wife, savior and guardian angel
Annabel
Who didn’t know I was seeing
Puppets, dolls and birds
But could sense I was in trouble
She went through Herculean effort
To bring me home
That day
Ironically it was
July 4th
She saved my life
Now I face a new reality
Funny as it sounds
Or not
I am too sick to be in a hospital
If I get another infection
I will need to
Ride it out at home
And if I die
I will not move a muscle
I will not make a sound
But thanks to my guardian angel
I will have peace of mind

8 Comments

Filed under Uncategorized

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

10 Comments

Filed under Uncategorized

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

1 Comment

Filed under Uncategorized

Happy 75th Birthday, Dad

Image

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

9 Comments

Filed under Uncategorized

I Was A Mummy For Halloween

Image

Rocky, Roman and Me as Mummy

 

Image

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 

5 Comments

Filed under Uncategorized

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 

6 Comments

Filed under Uncategorized