Still photo from the movie “Johnny Got His Gun”
I imagine
A science fiction
Where someone’s mind
Is transferred
Into my body
Suddenly
They can’t move
A muscle
They send mental commands
But nothing responds
They are frozen
They can’t make a sound
Utter one syllable
Or even click their tongue
Their eyes feel open
But they can only see
Shadows
They can’t smell
Because they are breathing
Through a tube
Attached to their throat
They have a catheter
Stuck in their genitals
And coming out of
Their stomach
And all the dull pain
In their ankles
Butt and lower back
I hear them
Screaming
In their minds
Trapped
Helpless
Baffled
Wondering
How they fell into this
Johnny Got His Gun
Nightmare
I hear them screaming
So loud
I can’t tell
If it is them
Or me
Screaming
Let me out
Let me out
Let me out
Then it hits me
Just by the slightest
Quivering of my lips
My last literal possible
Muscular movement
I wrote this poem
I got out
I hear myself
Screaming
I am free
With this science fiction
I am free
I escaped
I am free
Scott Lew's ALS Poetry Blog 
I love reading your work/poems. Every time I get an email notice of a new poem, I read it right away. It really means a lot to me that you are writing them and sharing your experiences with us. You inspire me. Thank you.
This poem is like falling onto slick granite and striking your head. Yes, there is pain and discomfort, but there is also the bare naked truth. There is no deception or misdirection, only a skull smashing into stone.
Scott, your voice speaks volumes and is heard. Thanks for allowing the rest of us into your world.
Scott,
Your words our powerful and make us all think and ponder our lives. We love you.
Steve
Hello Scott!
I often think about you and Ann…my God continue to bless you talented spirit!
Your friend,
Shanda
Scott, how are you able to communicate when you can see nothing but shadows? I’m sorry, I hope it’s not an indelicate question. I cannot fathom how a “quivering lip” can create communication, but maybe it does.
I think of ALS every single day. Not because I have it, I don’t. Not because I personally know anyone who has it, I don’t. Just because the ice bucket challenge 2 years ago this month opened my eyes to something, an illness, I believe needs treatment immediately. And I hope the FDA can get their red-taped heads out of their asses and offer patients the opportunity to try anything they care to, so the process of making headway is accelerated greatly.
Best wishes.
Claire,
I use an alphabet chart I signal with my lips. Thanks for being curious.
Thanks so much for responding. I check your page from time to time to read your thoughts. I loved the documentary on your Bickford project. Your brain is fascinating, even before ALS. So wish a breakthrough drug can offer you and others some functional improvement. Even if you’re never jogging again (that’s even a good thing), but that you’re able to use your hands and talk and laugh and hug your boys. That would be legendary! Don’t write a reply; I know it’s a bitch. But if/when you’re typing with your hands like a madman again one day, I’ll expect a reply to all your commenting visitors. 😉