Debbie Petrovsky, a woman with ALS residing in Massachusetts, pens poetry to articulate her experience living with the disease. Her unique expression is unique to her experience yet offers insight for those looking to learn more about the challenges of ALS. In this latest edition, we are pleased to feature two pieces submitted by Debbie. 

"I was diagnosed with Bulbar ALS that started in my head region. I was told by my doctors there is a chance the disease will remain there, and not affect my limbs. After many months this remained true, until now." 

Hands to Behold

I love my hands
They are more precious to me now as I begin to lose function. 
Pain has brought them into focus, demanding my attention.
My hands are full of beauty and disfigurement; health and illness.

Unable to open a lid, still capable of a sweet caress. 
Will I still love my hands when they are useless? 
Or hide them as they shrivel and ache.

My legs have always been long and slender.
They walked up 4,000 ft mountains, swam in turquoise water, and knelt down beside my garden beds. I'm glad they had the chance to walk down the aisle, pedal a bicycle, and run with my children.
What's next? What else will I love and loose?
 

I held my father's hand when I was three and again at forty-three when he lay dying from cancer. After decades, our hands were united again.
Now I walk arm n‘ arm with my sister. 

The distance narrows between my sons and me
Former ways of being disappear. 
Every visit we poke more and more holes in these once solid boundaries. ALS necessitates touch and beckons for closeness. 
Now I walk arm n‘ arm with my sons. 

Sister, brother, my children, go run, explore, follow your dreams.
For now, I have my own hand to hold.
I cradle my right in my left, just the right comforting fit.
When you're done exploring, let's hold hands while we still can.

- Debbie Petrovsky

"Freedom: ALS challenges a person’s freedom the moment the diagnosis is made.  The symptoms limit movement, speech, options. Using a scooter and American Sign Language, I can expand my capabilities and feel the wind in my hair." 

My Scooter and Me

My scooter and me, we get around
We go places; we do yoga together, gather garden pickings, transport dinner back to the hungry.

Drivers, not used to seeing me scooting around, shout, Ma’am, “Need any help?”
I pause, looking toward forever
When I stop rolling, they stop too
Ma’am, “Are u all right?”

I sign, “I am fine, fine, fine, fine” my fingers tapping, then pounding against my chest. Hoping one of them knows American Sign Language (ASL) or is that ALS? I somehow get them confused. ASL for ALS! A new bumper sticker for my car I no longer drive.
Do scooters have bumpers?

Wave em on by

My basket filled with forsythia in the spring and peonies come summer
How do I do this thing called ALS anyway?
I was told “No, PALS don’t ride scooters.”
I was told “No, PALS don’t learn sign language.”

As soon as I heard “no”, my nerve cells responded “yes”
Create the life u want to live
I’m glad I did

- Debbie Petrovsky