Tag Archives: Lou Gehrig’s Disease

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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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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Test of the Pest

The fly landed on my left eye ball
Glopped around
I could feel the tension
In its six legs
And it’s tiny mouth
Nipping at my cornea
It loomed gigantic
So close to my pupil
I can’t move
So I couldn’t shoo it away
I can’t close my eyelid
All the way
I can’t even make a sound
When I’m lying down
I laughed
Silent
Motionless
Trapped
Thought
This is how
It would feel
To be dead
Unflinching
In the face
Of what would drive the living
Mad
After what seemed like
An eternal
Eternity
The fly flew off
My nurse turned
Saw a subtle
Expression of fear
And disgust
Asked if I was ok
I quivered my lip
Which means
Yes

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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

Image

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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