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
This is how
It would feel
To be dead
In the face
Of what would drive the living
After what seemed like
An eternal
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


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2 responses to “Test of the Pest

  1. Cindy Faith

    Scott: Thank you to you and your family for sharing your lives so openly and honestly. Your words are thoughtfully distilled, laboriously presented and are immediately transformative. Your gift of happiness has softened my own perception of happiness in many ways. Suddenly, my highway commute and other daily trials seem so trivial.
    Wishing you many more years of creativity and of course, a near-term cure for ALS.

  2. Scott, HAPPY 46th Birthday!

    This story reminds me of one of my favorite books THE SHRINKING MAN. Why would a fly in your eye make me think of that horror and sci-fi classic? Because the main character, also named Scott, is attacked by a voracious spider and you were attacked by a fly? No.

    I think common aspect is the energy that comes with the acceptance. You always had this wisdom to find a way to continue to love and laugh. And make others laugh too. You are a vibrant presence. I still see the smiling spark in your eyes. Every moment my thoughts are with you and your strength lifts me up.

    From the beginning of your odyssey with ALS to the present day, you have shown the greatest courage and strength to be at peace with it. In fact, not relatively long after your diagnosis, in a handwritten note, you expressed this idea at the Burning Man festival. This is mentioned in the documentary film LIVING WITH LEW.

    More than a decade later, you still follow this commandment to yourself to be at peace with it. You have continued to smile and laugh with the growing challenges that hit you. You keep moving forward, following your dreams, and reaching for your goals.

    More than a thrilling read, THE SHRINKING MAN blew my mind because I had no expectation for a bright and hopeful message from the mostly terrifying tale. As Scott continues to shrink each day, both the character and the reader experience his fear of how much more time can he continue to exist. By the end, when Scott is smaller than an atom, then he actually finally finds comfort. He starts living with a new philosophy that he will exist no matter how small he shrinks. He discovers the wonderful beauty of another entire world that was beyond his perception as a regular size man. As great and infinite as the universe he has known, he concludes that: there is no zero limit. He believes he will still exist and that he will still matter.

    Love you always,
    Your brother,


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