Double Whammy Horror Story

 

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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

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16 Comments

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16 responses to “Double Whammy Horror Story

  1. read this one twice, and glad I did. Something new found each time, but the ending… that’s what it’s all about. Thank you for sharing so honestly.

  2. Arby737

    You know, your best attributes were always behind your eyes.

    Love ya bud,

    Steve

    Sent from my iPhone

    >

  3. Steve arbetmam

    You know, your best attributes were always behind your eyes.

    Love ya bud,

    Steve

  4. Ann Straub

    Your boys are very special guys. I was laughing with Chris tonight about a memory from this past summer and the boys. Children make all the difference in the world. Annabel

    Sent from my iPad

    >

  5. Rogers Hartmann here. My heart aches for you, but you are such a strong guy, even if you don’t always feel like it. I’m so glad you can find some happiness in hearing the boys’ chipper greetings. I’m proud to know you. And your poetry is at once heartbreaking and inspiring. Much love always. Xo

  6. Nancy Sterling

    Aw, Scott, I know you don’t know me from Adam, but my soul hurts for you. I keep reading over what you have written and I just can’t fathom how you still manage to find that light at the end. Our kids sure do help though, don’t they:) Your kids are adorable. Your wife and family are also beyond awesome. Like mine, I dare say:) So while I can’t understand what you are going through Scott, I am dealing with double vision at the moment, due to Lyme and fibro crap. Thought I would share a little story with you. I woke up one morning and my daughter came over. She was horrified as soon as she saw me. Now I’m thinking, ok, I realize I don’t look all that great when I first wake up, but c’MON! I didn’t realize I had Bell’s palsy, so one side of my face and mouth drooped down. Didn’t even know it. Anyhow, long story short, it was on Thanksgiving and my daughter-in-law is an incredible artist. She makes me this big smiling mouth on a stick (with lipstick, no less) to hold in front of me when I talked. We laugh about it all the time. In fact, we laughed til we were almost crying. I love a good, hearty laugh. Face is back to normal now, whatever normal is, ha! I do have a fun family, I must say:) I hope this made you smile a bit. I guess my point is that you inspire me with your incredible mind and will to live. I think about that alot. Take care:) (((hugs))) Nancy

  7. Daniel J. Lew

    Scott,

    Wonderful bright lights, your amazing boys, Roman and Rocky.
    Radiators of love and laughter. Super high wattage. Unparalleled power.

    The awesome R & R home entertainment system. Years ago, you and Ann told the funny mummy story, it still makes me laugh. They had started to learn about the Egyptian mummies, and boys explained that a mummy is buried in an esophagus. Rather than in a sarcophagus.

    Recently, you were able to see the film and pictures of my new adventures with Rocky and Roman. We shared another fantastic trip to the Griffith Observatory. We hiked all the way to the top and we saw the scientists make a comet. You were able to see it better on Apple TV rather than on your iPad. Luckily for you, your double team, a super kinetic dynamic duo, will always send you signals that transmit far beyond your giant Ultra HDTV.

    Love always, your brother,

    Dan

  8. Daniel J. Lew

    Scott

    Wonderful bright lights, your amazing boys, Roman and Rocky.
    Radiators of love and laughter. Super high wattage. Unparalleled power.

    The awesome R & R home entertainment system. Years ago, you and Ann told the funny mummy story, it still makes me laugh. They had started to learn about the Egyptian mummies, and boys explained that a mummy is buried in an esophagus. Rather than in a sarcophagus.

    Recently, you were able to see the film and pictures of my new adventures with Rocky and Roman. We shared another fantastic trip to the Griffith Observatory. We hiked all the way to the top and we saw the scientists make a comet. You were able to see it better on Apple TV rather than on your iPad. Luckily for you, your double team, a super kinetic dynamic duo, will always send you signals that transmit far beyond your giant Ultra HDTV.

    Love always, your brother,

    Dan

  9. Fred Glassman

    Scott,

    Thanks for sharing the poem. Considering that there are over 1,825 neurological diseases in the world and you only have 2, yes, you are lucky!

    Stay true, my friend. Look forward to seeing you, Ann and the spawn on Friday!

    Love,

    Mr. Glassman

  10. Kathleen Shanfield

    Scott, Those of us here at CART at Rancho truly enjoy hearing from you and reading your beautiful poems. You are truly amazing! Just curious how you are still communicating and writing. We see so many patients, and we get stumped…a lot. Anything you can share about your current access methods would be appreciated. Please send regards to your lovely wife and beautiful boys!
    Kathleen, Andy and the CART team

    • Kathleen and the CART team,

      Great to hear from you guys. Unfortunately, I am too disabled to connect to a computer by myself. Thank God for nurses who understand me!

      • Kathleen Shanfield

        Yes! Thanks for sure. How do they interpret/understand you? Can you blink or move some part of your face while they scan through letters, or is it a combination of things? We have a few patients now who have exhausted all the computer methods and they use either manual eye gaze boards, or user assisted scanning, kind of like in the movie “Diving Bell and the Butterfly”. Whatever you are using is working obviously as your poems are so beautifully written. Your boys are growing so big!

  11. Thanks. I twitch my lips and use an alphabet chart. Eye gaze never worked for me because of my poor vision. I hope someone invents an Iron Man suit for real. That’s what I need!

    • Kathleen Shanfield

      Theres a study going on at UCLA for brain computer interface and communication. They will come to your house and put a funny cap on your head with a bunch of electrodes attached. I’m sure you could have used this in one of your movies somehow. 🙂
      You then watch a bunch of flashing letters on the monitor to calibrate, and then you can spell. Its really slow but it might be “fun” to try. Would you like more information. I think the study session lasts a couple of hours.

  12. Gabriela Ortiz

    Scott, you and Anna have inspired me to reach out to others with ALS. Those who have many questions but are afraid to ask. Because of you and your strength is why I can explain this disease to others, never sugar coating it. Whether life is living with a disease, then that is what life is. I love to hear about the boys, they bring YOU back to life.
    Thanks,
    Gabriela (was your RT from PulmoCare)

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