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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Uncle Dan

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Rocky, Uncle Dan, and Roman

My biggest fear
Is not being here
For my kids
Although
As I am now
Frozen
I often feel like
A place holder
For a dad
But because of you
Uncle Dan
My kids know so much about me
It’s like I have conversations
With them
Through you
Amazing
Since I lost my ability to talk
Only a few months
After they were born
Yet thanks to you
They know I like
Magic and tikis
Planets and museums
Art and bad puns
The list is vast
And deep
It’s a tremendous comfort
To know
If I’m not around
You will be here
For them
For me
When they came back from visiting you
In Chicago
Last time
They both said
Uncle Dan looks like daddy
And I thought
Right
Outside and in
You give me
Peace of mind
All a brother
Could ever
Hope

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Our Munchkins, on Mother’s Day

As a salute to you, my love

I am posting my favorite video of the boys

I can’t believe this was 6 years ago

You are an incredible Mom

And given my state of being

A darn good Dad, too!

Happy Mother’s Day, Crab Leg!

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Happy 50th TFGYWBD, My Love!

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Us, on our honeymoon, June 2000

People don’t know
By looking at you
You have ALS
They don’t see
The mental stress
Of wasted muscles
Not being able to
Move
Eat
Talk
Breathe
All of which you have
Because you bravely chose
To take on this horrible beast
With me
They don’t know
That nearly 3 years
To the date
We were married
We were diagnosed
And that was
13 years ago
They can’t possibly understand
Your justified
Anger and frustration
At the unfairness
Of life
Which you feel
So strong
Because you have
The most beautiful
And generous
Soul
I say
I love you
But that is not enough
Months ago
I was in the hospital
Dying
I said
I release you
And instead
Of running away
You said
Not yet
And you helped
Save me
Incredible
Today is your 50th birthday
There is no gift
I can give you
That can ever match
The sacrifice
You have made for me
I don’t even want to call it
Your birthday
I want to call it
Thank Fucking God
You Were Born Day
So Happy TFGYWBD, Crab Leg
Together
Let’s shake our fist
At the cruel
Universe
And laugh

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Double Whammy Horror Story

 

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The windows into my soul

The doctor was grim
She had horrible news
I had dry macular degeneration
An incurable disease
Of the retina
It was causing my blurry vision
And in five to ten years
Could cause blindness
I was one of the youngest people
To whom she had ever
Given this diagnosis
I think she expects a bigger reaction
But I’m sitting in a wheelchair
Unable to move
My arms and legs
Taking sips of air
From a ventilator
Looking nonplussed
My wife explains
I’m already four years into a disease
That has a life expectancy
Of five years
Dry macular degeneration
Will need to get in line
Behind the big baddy
Plaguing me
Lou Gehrig’s disease
I think the doctor was relieved
Not to have a hysterical patient
In her exam room
And she was right
That was nine years ago
Today
On top of only
Being able to move
My lips and eyelids
I’m almost
Blind
My vision is bad in both eyes
With spots where everything looks
Like squiggles in a fun house mirror
And bright lights
Hover in discs
And sometimes shoot like stars
Across my field of view
My right eye is stronger than my left
But ALS has weakened my right eyelid
So I can only open it
With great effort
Imagine the odds
Of the same person
Getting double whammied
By two very rare
Neurological diseases
If there was a genetic lottery
I would have won
A billion dollars
I’m that lucky
I feel buried alive
In a sarcophagus
Of my own body
But just when
I want to give up
I hear my boys
Returning home
From their latest adventure
“Hi daddy!”
Their voices ring
Like bells
Calling me
Back to
Life

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R.I.P. David Bowie

Only a genius

Would invent an alien

Ziggy Stardust

To help cure us

Of our feelings of

Alienation

 

Enjoy this clip of the last moments Bowie ever performed as Ziggy Stardust.

 

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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

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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

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