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.
"I wrote this in March, eight months ago. At the time I was not "falling, dropping, gaping, or gasping." My ALS has progressed since then. I still have a choice where to place my focus."
“Are you okay? “ I hear this question again and again
I robotically gesture “yes”
I console myself. It's all relative…….
Yes, I'm walking, moving about, carrying out my tasks
I wish to toss the focus over there, with you
“Are you all right?” asks my inner voice
There is only silence
I’m annoyed by this frequent question, "Are you okay?"
I’m not falling, dropping, gaping, or gasping, yet. So yeah sure, I am okay
I'm only categorically all right
Honestly, I am in freak out mode pretending everything is cool
You see, this part over here, my right hand, just suffered a hand contortion
This is not all right; In fact, it’s very wrong!
Freaked out, I ask my own questions and search for answers
The disturbing details ride upon my chest for as long as I can suppress them
I won't tell you, you, or you; or even you, whom I hold so dear
Why be an open book, reciting every line?
Create family raucous with the revelation of yet another new ALS symptom?
My concern for them
My concern for me
Reality gains presence, at the very center of my chest
Sway me not from my focus, by some imaginary scary scenario
Sway me not with your inquiries
Get out of my way and take your head with you
My heart is open
I, am enjoying these moments right here, right now
Watching the moon shine over the shore,
Viewing Van Gogh with Aaron
Gazing at my Birthday Cake
Linda is searing garlic in the skillet
My senses explode with delight
- Debbie Petrovsky, March 2021
Debbie Petrovsky is a resident of both Massachusetts and Maine where she is a wife, mother, daughter, sister, avid gardener, and dietitian. She received her diagnosis of ALS in August 2019.
Before her disease struck, Debbie led a busy, productive life; cooking healthful family meals, exercising, exploring nature, or instructing patients about healthful diets. She has to give up many of these former activities or adapt them. Writing has become a new source of pleasure.