‘I cannot imagine watching the world go on around me and not being able to interact with it to the best of my abilities.’

Nadya Resnick, Merrick

“My dad, Wayne, passed away two months ago. In April 2022, he was diagnosed with ALS [amyotrophic lateral sclerosis], also known as Lou Gehrig’s disease. The news came as a shock to us all. It first began with a fall while my dad was on duty as a Nassau County police officer. He thought it was a moment of clumsiness until it happened again, and he went to the neurosurgeon and got the diagnosis. ALS is a terrible neurological disease in which your muscles start to weaken, and the things that we take for granted every day, as big as walking to as little as scratching an itch, get stripped away. I only heard of ALS once when I was in middle school, when the Ice Bucket Challenge was trending.

Tomorrow isn’t promised for anyone. Communication is key.

“Since then, I’ve heard nothing about it. It is quite a shame that a disease so debilitating barely has any audience. It seems like only those who’ve been through it know about it. I guess you can say they’re the lucky ones. Ignorance is bliss. My mom and dad adopted me and my four siblings from Kazakhstan. Growing up in a big family was super fun, but it also led to communication problems when I was a teenager. There was a long time when I didn’t speak to my parents. I tend to think a lot about those times now. Communication became the most important thing when it came to coping with my dad’s illness.

“Over the past year, my dad’s ability to speak went down to a hoarse, faint whisper. We communicated with him through an alphabet board. This made it super frustrating for my dad. His mind was all there, and he heard and saw everything, but couldn’t get the words out. I saw the sadness in his eyes when people pivoted the conversation when the topic wasn’t even finished yet. It was absolutely heartbreaking. I cannot imagine watching the world go on around me and not being able to interact with it to the best of my abilities. This situation made me grateful for what I have. Tomorrow isn’t promised for anyone. Communication is key. Do not let your grudges get in the way of building back relationships. Wake up overjoyed that you can walk, talk and eat, and watch your mindset flip. And most importantly, hug your dads.”

Interviewed by Hannah Fusaro