Tag Archives: Inspiration

Beautiful Letter From Sam

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The following letter was written by my niece, Samantha. It was a school assignment to write about someone with whom they would like to have dinner. Most of the students chose presidents or pop stars, but my niece chose me. I was surprised, honored and the letter brought tears to my eyes. Thank you, Samantha.

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Doorway to the Dark

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Rocky and Roman, 18 months old, standing at the doorway 

I remember
Their tushies
And the rolls of baby fat
On the back of their eighteen month old thighs
Rocky and Roman
Stood naked
In the doorway
To our back yard
Pointing at the night sky
Excited
Dark, Mommy, dark?
Ann just told them about
Darkness
And even though
They had seen it
Many times before
This was the moment
Their new brains
Put a name
To that marvelous phenomenon
Dark, Mommy, dark!
Yes, yes, yes!
I sat motionless
Taking mechanical breaths
In awe
Blessed to
Be witness
To their discovery
I wanted to jump up
Hug them
And tell them about
The moon and stars
Instead
I silently cried
My boys
Had discovered
The darkness
Ann asked if I was emotional
Yes
But I couldn’t explain
Why

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My Dark Sci-Fi

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Still photo from the movie “Johnny Got His Gun”

I imagine
A science fiction
Where someone’s mind
Is transferred
Into my body
Suddenly
They can’t move
A muscle
They send mental commands
But nothing responds
They are frozen
They can’t make a sound
Utter one syllable
Or even click their tongue
Their eyes feel open
But they can only see
Shadows
They can’t smell
Because they are breathing
Through a tube
Attached to their throat
They have a catheter
Stuck in their genitals
And coming out of
Their stomach
And all the dull pain
In their ankles
Butt and lower back
I hear them
Screaming
In their minds
Trapped
Helpless
Baffled
Wondering
How they fell into this
Johnny Got His Gun
Nightmare
I hear them screaming
So loud
I can’t tell
If it is them
Or me
Screaming
Let me out
Let me out
Let me out
Then it hits me
Just by the slightest
Quivering of my lips
My last literal possible
Muscular movement
I wrote this poem
I got out
I hear myself
Screaming
I am free
With this science fiction
I am free
I escaped
I am free

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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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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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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

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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

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A GOOD NIGHT WITH ALS

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A Good Night With ALS

Last Thursday at The Hollywood Roosevelt Hotel, the ALS Association gave my wife and I an award for being inspirational people who fight ALS daily. This was our acceptance speech.

Ladies and gentlemen, generous supporters of the ALS Association, thank you and thanks to Ben Garant for presenting us with this award, and thanks to Mark Amin, David Higgins and Sobini Films for producing “Sexy Evil Genius” and “Jujitsu-ing Reality”. It’s a real honor and blessing for us to be here tonight to share this special moment with you. We would like to dedicate this award to my Mom, Tammy, who couldn’t be here tonight because of her own health reasons.

First of all, for the record, ALS totally fucking sucks. Just wanted to get that out of the way.

To put it in perspective, I look at myself in “Jujitsu-ing Reality”, which was shot only about two and a half years ago, and I think, look at that able-bodied guy. Sure, I was head-to-toe paralyzed, couldn’t speak or breathe without a machine, but I could still move my neck slightly, enough to use an on-screen keyboard. I wasn’t slack-jawed and drooling. My right eyelid wasn’t drooping, halfway closed. That is the nature of ALS. Just when you get comfortable with your level of disability, no matter how extreme, there’s always another muscle to lose.

First, you can’t walk, then move your arms, hands and neck, then you can’t eat, you can’t move your face or smile or laugh, then you can’t breathe and last to go is your ability to speak. All the while that your ability to interact with the world diminishes, your sense of wanting to reach out into it increases because your mind remains active and alert. It’s like being buried alive in your own body.

Sounds frustrating? It can be. Not just for you, but for the small army of people, saints and angels, it takes to keep you going.

So, why live? Easy. Life is beautiful. Every day is a chance to have fun and be creative. I get to see my four year old twin monkeys, er, I mean, boys, grow up, learn amazing stuff, and use me like a jungle gym. I get to see my wife smile, do her silly dances and wrestle with Rocky & Roman, our sons. I get to have my hands and feet licked by our dog, Penelope. The other day, I was in our backyard and I saw a hummingbird flying around our lemon tree. You just can’t enjoy life like that when you’re dead.

I’m just trying to paint a picture for you of what having ALS is like and why it is so important for you to support the ALS Association. Let’s find a cure for this horrible disease and help families afflicted by it.

It might be too late for a cure for me, I hope it’s not, but if it is, I would love for my epitaph to be, “He was the last person to die from ALS.”

Thank you. Thanks to my wife, Annabel, for reading this speech. And thanks to the ALS Association for this award.

 

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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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