Monthly Archives: May 2011


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
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
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
 and with alternative methods of communication
But nothing can prepare you
 for the reality of being

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
 overwhelms me
I use what dimension I have left
My mind
 to try
 and feel the fireworks


Filed under ALS, ALS Poetry, Lou Gehrig's Disease, Poetry

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


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
I try to move
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

 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
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
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
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
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
I don’t just want another Cute Report
I want to get out of that room
And see my boys

whenever the race is finished
I’ll know
I won

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Filed under ALS, ALS Poetry, Lou Gehrig's Disease, Poetry

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
 on my forehead
My thin teather
 to our shared
  dot dash dash
  dash dash dash
  dot dash dash
I’m broadcasting

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
You and me
 being Us
 to and fro
 across wires
 light beams
 into the Void
 whap-dashing and
 across the Universe


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

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

dot dot
dot dash dash
dot dash
dot dot dot
 and gone

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Filed under ALS, ALS Poetry, Lou Gehrig's Disease, Poetry

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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Filed under ALS, ALS Poetry, Lou Gehrig's Disease, Poetry


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.

Scott Lew


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