By: Scott Lew 9/14/12

 It occurred to me
As I hit my 44th Birthday
And start my 11th year
Living with ALS
That I’ve spent 25%
One quarter of my life
Under the specter
Of this challenging illness
It hasn’t all been fun
But it has been
The perspective
As I devolve
And every little thing
Becomes more intense
That’s enjoyable
But Death
Sitting on my chest
Teasing me not to breathe
Is annoying
Most miraculous
My wife
Without whom
I would be dust
Has lived with IT
For over 80%
Of our marriage
And she still manages
To smile
I’m the Luckiest Man


Filed under ALS, ALS Poetry, Lou Gehrig's Disease, PALS, Poetry, Scott Lew

9 responses to “25%

  1. Beautiful. I came here via the documentary!

  2. Your bro Dan

    You are a champion fighter. Consider for a moment that they say 80% of the job is just showing up, and how amazingly tough you are to show up (more than 90% of people with ALS stop showing up after 3 to 5 years.) I’m the luckiest brother to be inspired beyond measure by your strength and love.

  3. Suzanne Mustacich


  4. Kristine

    You and Ann are two of the most amazing people I have had the pleasure to meet and get to know. Wishing you a wonderful 44th year. Give those two little men of yours a smile for me!

  5. Susie

    Happy Birthday Cousin. Thinking of you 🙂

  6. Mandy

    Love this. Happy to read your words, to see pictures of your kids.

  7. Kara Francis

    Scott, you may not remember me but we were d-girls and d-boys together back in the day. I stumbled onto this blog and quickly found myself absorbed by it — your story, your fantastic writing, your gorgeous family. You are awesome. Those boys could not be more adorable. They are so very lucky to have you as a father and role model. Best, Kara Francis

  8. Susan

    A true love story

  9. Beverly McCallum

    Scott, I simply had no idea that you had turned into such a truly fine human being. You will probably not remember, but I was a banker when you were at USC. You, my then-friend Eva, one of your friends and I took a trip down to Mexico and back. In short, I have a pack of pictures from that day that show a young, vivacious Scott Lew. My only excuse for not knowing about and praying for your family long before now is that I spent years overseas and was almost completely out of touch with Southern CA. If you and your wife would like the pictures, I would gladly send them to you. I’ve found that children are eventually amused and wonder at seeing pictures of us as young adults. Words fail as I try to express my admiration for your courage and inspiration to others. May your sons grow in health and happiness, savoring each day with their father. Your poetry and story instantly shook me into a greater awareness of the overwhelming gratitude I have for each breath I take and each chance that I get to look upon my own brood.

    Beverly McCallum

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