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
Scott Lew's ALS Poetry Blog 