Tag Archives: Lou Gehrig’s Disease

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

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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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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 

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Obliterated

OBLITERATED
by Scott Lew 5/19/11

The darkness doesn’t come suddenly
It creeps in behind slowly closing walls

At first, I don’t even notice
There was this annoying twitch
 in my chest and upper arm muscles
Forks would drop out of my hands
 every few meals
Fishing coins out of my pockets
 was like a Chinese Finger Puzzle
I’d trip over my own feet
Running got impossible

But these are all problems easy to live with
I didn’t even see the darkness

Then I got the diagnosis
ALS
No cure
Death in 2 to 5 years

Holy fucking shit

But instead of despair
 this amazing brain-trick happened
Everything got brighter
Colors more vivid
Tastes, touches more profound
Moments would freeze in time
 and reveal their unique preciousness

Life became a fireworks display so grand
The dark night sky
 behind the explosions of light
 was invisible to my eye

I greeted my failure to walk with enthusiasm
 sounds strange
But I’d known for almost 2 years
 being a wheelchair guy was in my near future
And I was tired of falling down
 cracking my head on the floor hurt

Next to go was my hands and arms
Somehow
I was able to operate my chair
 with just a little bit of strength
 in my upper right arm and wrist

I was perfectly content
 being a quad in a chair
 as long as I could wheel around
 crack jokes
 and interact with the world

Aside from some minor assistance breathing
 resolved by a vent attached to my chair
I remained in that blissful state
 for almost 3 years

The doctor said I’d hit a plateau

And there I was
 sitting on that precipice
Enjoying the fireworks
When I fell off the cliff

The little strength in my right arm vanished
 I couldn’t move my chair anymore
 I was stuck until someone would move me
For the first time
I felt trapped
 like an invalid

Then eating became too dangerous
 I would choke on the smallest morsel
Like not walking
 not eating was something I expected
Years before
I even had a gastric tube surgically placed
 so I could still live when my mouth failed

But not eating is much more difficult
 than not walking
It removes you from people
 social situations
And denies you one of the true
 primordial pleasures of existence
Then to just screw with my head a little more
ALS took away my ability to drink

That was unexpected

And the walls kept creeping in

My speech became unintelligible
Then when my breathing finally collapsed
 and I needed a tracheotomy to live
My voice was taken away completely

Like not eating
 not speaking
 removes you
 isolates you
 but much worse
I prepared for it
Mentally
 and with alternative methods of communication
But nothing can prepare you
 for the reality of being
 speechless

And the walls kept creeping in

There were more surprises
No longer able to breathe
 I lost my sense of smell
When muscles in my eyelids got weak
 my eyesight got blurry
 and is getting worse

We live in boxes
 of the limits
 of our perceptions
The darkness surrounds just outside
And as the walls keep creeping in
And real fear
 of being swallowed
Obliterated
 overwhelms me
I use what dimension I have left
My mind
 to try
 and feel the fireworks

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Past The Finish Line

 

PAST THE FINISH LINE
by Scott Lew 7/23/10

I remember paramedics
 rushing me out the door
 past my brother, dad and in-laws

Backout

Wake-up in a dark room
 hear my wife introduce me
 to the doctor who will do the tracheotomy on me
 I can see him but not her
 some guy’s breathing me with an ambu bag
 he’s got it jammed in tight
 I taste blood in my mouth
 Need more air 

Finally, I see Ann
 got her no-bullshit game-face on
 I love that

Blackout, again

Wake up and where am I?

A hospital room
Ann and my dad, a nurse, people in and out
Everybody seems relieved
Find out, I almost died
Paramedics said I was 10 minutes away
I’m lucky to be here 

I try to talk
 nothing
I try to move
 nothing
I was a quad before last night
 but now I’m weaker
 can barely move my head
And there’s a new pressure in my neck
 from where I’m breathing

Gurgling
 they suction my mouth and trach
 come up with
 loads of blood and gooey-tissue stuff

Holy fuck do I feel beat up
 I can’t tell anyone
 but they know

The doctor arrives
 he’s worried about my heart, lungs, kidneys and infections
 the pneumonia that put me here
 plus a bug I might’ve got in the operation
 my white blood cell and blood sugar counts are astronomic 

I’m there at least a week
Maybe two
Laid up

Ann brings a letter chart
 So I can say words by blinking
 Like that guy in The Butterfly And The Diving Bell
 But it’s slow and confusing
 Annoying everyone and me
 So I say as little as possible

Night brings no sleep
I doze off and wake up
Feel like I’m drowning in saliva
No one around to suction me
 So I just drool
4 a.m. nurses come in to give me a bath
 Don’t mean to abuse me
But they don’t know how fragile I am
Leave my arms dangling
Ankles and knees crunched
My head twisted back and to the side
I’m frozen in pain
And can say nothing about it
5 a.m. X-Ray Man rolls in
Throws me forward
puts a plate behind my lungs
throws me back to take his shot
throws me forward and back again
to retrieve the plate
I’m like a broken marionette
6:30 and a 20 year old girl comes to draw my blood
Sticks me 5 times but can’t find a vein

I’m screaming soundless for her to stop
But she won’t look at my face
Keeps sticking

I’ve never felt more trapped
Manage a laugh to myself
Thinking
My life right now would make an excellent horror movie
Misery meets Johnny Got His Gun

I can’t shake this feeling
I should have died 

8 years into a disease that was 90% likely
To kill me in five
I’m way past the finish line
Still trotting like some eager horse
Who doesn’t get the race is over

I think about my life experience
The boys
Ann
My super hero
My amazing family and friends
Who showed me so much love
And made me feel so good
I can’t even describe
My professional accomplishments
I’m a legitimate one-hit-wonder
All those places and stories and adventures enjoyed

Maybe that’s enough
A life
I’ve done it

Now I’m just a burden
An exhausted blob
sucking the life out of people who love me 

or at least that’s how I feel
sometimes
at night

8:45 and I’m saved by Ann
She adjusts me out of my torture pose
so I’m comfortable

Gives me The Cute Report
 About Rocky and Roman

Makes me feel better

Days go by like this
Nights
These thoughts I don’t tell anyone
I live for those Cute Reports
But I hate the toll these hospital trips
Take on Ann
Friends come to visit
My dad, brother, father-in-law, cousins
I’m so tired I can barely keep my eyes open
Feel like a shit heel
Because I can’t express anything 

One week goes by
They say I’m not getting better
Have a new infection
A test of my trach on my home ventilator
Sends my blood pressure 200 plus over 100
My head feels about to explode
Ann is yelling at the nurses
I’m going to stroke out
But it’s 20 minutes before
the Person with Authority
comes to take me off 

I’m shaking
With a skull-splitting headache
But better for it
Realize
I don’t just want another Cute Report
I want to get out of that room
And see my boys

Then
whenever the race is finished
I’ll know
I won

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Hanging In

HANGING IN
by Scott Lew 4/20/09

It’s about staying alive
I guess
Tapping out letters
 on a key pad
 with this infra-red
 dot
 on my forehead
My thin teather
 to our shared
Experience
  dot dash dash
  dash dash dash
  dot dash dash
Wow
I’m broadcasting
Brainwaves
 crackling

My message
 try to find
 the bright side
 that reason why
 any excuse
  to smile

It’s about hanging on
 with type
 for fun
 dots and dashes
 into the Void
Taking pleasure
  in creation
  and some lucky times
  the dots and dashes
   that echo back

It’s about communication
 dash dot dot
 dot dot
 dash dash dot
Dig?
You and me
 being Us
Echoes
 to and fro
 across wires
 light beams
 ourselves
 into the Void
 whap-dashing and
 tap-dotting
 across the Universe
Together 

Connected

It’s about why survive
I guess
 our plot
 to enjoy
 the View
 this Perception
 five senses
 and that extra-sense
Being
Alive
 fighting back
 against
 the inevitable 

Death is no more
 dots and dashes
 no more
Us
Just those echoes
 might survive
Brainwaves
 fading fast and forever
 into the Void

dot dot
I
dot dash dash
dot dash
dot dot dot
Was
Here
 and gone

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Lessons In Year 8

Lessons in Year 8
by Scott Lew, on his 41st birthday, 9/24/09 

Not being able to walk is no big deal.  That’s just getting started.      

When your fingers and hands stop working, your arms are still useful.  When you can no longer use your arms, they become your dog’s favorite pillow. 

Not being able to eat is worse than not being able to use your arms and legs, but not being able to speak is worse than not being able to eat.  You get shut-in.  Trapped. 

That’s the scariest part of the whole damn thing.  Your mind feels like your entire body. 

When you can’t breathe anymore, you can’t laugh.  But people will still enjoy hearing you snort through your ventilator and understand that it’s laughter.

You do a lot with just your neck and shoulders – nod, use a computer, dance a modified robot dance, wink at toddlers, and much more…

And losing strength in your neck and shoulders will give you nightmares. 

More than ever, you will appreciate the People Who Love You.

That feels so incredible, you will forget you have ALS.  For hours…

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