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 two years after contracting ALS. “Sick” is my new normal. I don't remember what it feels like to be healthy."
Sick of Being Sick
Sick of it
Sick of the glass medicine jars clanging together, creating a raucous
Six jars sitting on top of a hard plastic tray coming at me
I try to dodge them, but they just keep coming, day after day
A caregiver serves them to me day and night
I'd rather a serving of asparagus or filet of sole
I purchased the pretty oblong, yellow-rimmed tray for serving food, not pills
It now holds reused glass medicine jars filled with water and dissolved medicine
Down the hatch
Who knows what these pills really do, or their value?
Humans hovering over me, looming large
I feel smaller than myself
Water; too much, too warm, too slow. “Hurry up,” my damn hand is hurting!
Why do I hate this so?
Because It conjures up The Aged, wastes my time, is yet another have-to-sit-down activity Every single day
The monotony of the repetition could kill me
Then I would not have to hear the clanging glass jars anymore
- Debbie Petrovsky, 12/28/2021
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.
I was diagnosed March 2020 with slow progression Bulbar at 75. Loosing my speech is not easy but loosing my life at 59 is unthinkable! Her words are true and clear, ALS must be stopped for everyone!
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