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

6 responses to “Obliterated

  1. LetterzToNoOne

    Wow, very expressive, heartfelt and moving. Good job at bringing that across.

  2. Kevin Moreton

    Wow, Scott, amazing. I want to reach through this computer & hug you, for hours. But I’m also crying and my keyboard is probably going to short out before I can finish this, but I don’t care. Thank you for writing, and for letting me see out of your box along with you: Trapped, but still able to see the beauty in many many many things. Many of us trap ourselves in boxes of our own creation; we insulate and obsess and narrow our focus, and, well, deal. And every once in a while something or some ONE comes along and OBLITERATES the walls of our humble self-made boxes. You were that ONE today. w/ LOVE.

  3. Melanie

    I don’t know if you’re a praying kind of guy, but I’m going to keep you in my prayers tonight. As I read your words, I was in that box with you. I hope you find freedom from the box, one way or another, very soon, so you can be at peace with no fear or pain.

  4. SMG

    Thanks for sharing this — what you’re going through must be next to impossible to convey; poetry seems like the perfect medium to give people an idea of what it feels like. Thanks for shaking up MY perception today. Keep fighting to feel the fireworks, man.

  5. Paula

    Your words are amazing. Thank you for sharing so honestly…
    you are extremely talented.

  6. Gabriela Ortiz, RCP

    Hi Scott it’s Gabriela (PulmoCare) I truely value your words, your words help me not only understand the scientific part of ALS but now the more emotional mind thoughts that come with this reality. In our medical profession we all seem to veer towards a certain disease that we want all knowlege of and just when I think that I have learned one more bit of it………something else pops up. Thank YOU

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