Tag Archives: ALS

Beautiful Letter From Sam


The following letter was written by my niece, Samantha. It was a school assignment to write about someone with whom they would like to have dinner. Most of the students chose presidents or pop stars, but my niece chose me. I was surprised, honored and the letter brought tears to my eyes. Thank you, Samantha.





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Doorway to the Dark


Rocky and Roman, 18 months old, standing at the doorway 

I remember
Their tushies
And the rolls of baby fat
On the back of their eighteen month old thighs
Rocky and Roman
Stood naked
In the doorway
To our back yard
Pointing at the night sky
Dark, Mommy, dark?
Ann just told them about
And even though
They had seen it
Many times before
This was the moment
Their new brains
Put a name
To that marvelous phenomenon
Dark, Mommy, dark!
Yes, yes, yes!
I sat motionless
Taking mechanical breaths
In awe
Blessed to
Be witness
To their discovery
I wanted to jump up
Hug them
And tell them about
The moon and stars
I silently cried
My boys
Had discovered
The darkness
Ann asked if I was emotional
But I couldn’t explain


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My Dark Sci-Fi


Still photo from the movie “Johnny Got His Gun”

I imagine
A science fiction
Where someone’s mind
Is transferred
Into my body
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
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
In their minds
How they fell into this
Johnny Got His Gun
I hear them screaming
So loud
I can’t tell
If it is them
Or me
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
I am free
With this science fiction
I am free
I escaped
I am free


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Uncle Dan


Rocky, Uncle Dan, and Roman

My biggest fear
Is not being here
For my kids
As I am now
I often feel like
A place holder
For a dad
But because of you
Uncle Dan
My kids know so much about me
It’s like I have conversations
With them
Through you
Since I lost my ability to talk
Only a few months
After they were born
Yet thanks to you
They know I like
Magic and tikis
Planets and museums
Art and bad puns
The list is vast
And deep
It’s a tremendous comfort
To know
If I’m not around
You will be here
For them
For me
When they came back from visiting you
In Chicago
Last time
They both said
Uncle Dan looks like daddy
And I thought
Outside and in
You give me
Peace of mind
All a brother
Could ever


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Our Munchkins, on Mother’s Day

As a salute to you, my love

I am posting my favorite video of the boys

I can’t believe this was 6 years ago

You are an incredible Mom

And given my state of being

A darn good Dad, too!

Happy Mother’s Day, Crab Leg!

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Happy 50th TFGYWBD, My Love!


Us, on our honeymoon, June 2000

People don’t know
By looking at you
You have ALS
They don’t see
The mental stress
Of wasted muscles
Not being able to
All of which you have
Because you bravely chose
To take on this horrible beast
With me
They don’t know
That nearly 3 years
To the date
We were married
We were diagnosed
And that was
13 years ago
They can’t possibly understand
Your justified
Anger and frustration
At the unfairness
Of life
Which you feel
So strong
Because you have
The most beautiful
And generous
I say
I love you
But that is not enough
Months ago
I was in the hospital
I said
I release you
And instead
Of running away
You said
Not yet
And you helped
Save me
Today is your 50th birthday
There is no gift
I can give you
That can ever match
The sacrifice
You have made for me
I don’t even want to call it
Your birthday
I want to call it
Thank Fucking God
You Were Born Day
So Happy TFGYWBD, Crab Leg
Let’s shake our fist
At the cruel
And laugh


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Double Whammy Horror Story



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
On top of only
Being able to move
My lips and eyelids
I’m almost
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


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