Retrospective Lily

“What are you playing with?” I asked, watching the 4-year-old boy unzip a multi-colored backpack full of legos, coloring books, and other forms of entertainment.

He sat in a chair at a table several feet away from me. I also sat in a chair, though mine had wheels.

His mom, a tattoo artist, chatted with my friend as she stabbed his flesh with a buzzing needle. The sounds of their animated conversation filled the air in the tiny room, creating an even louder buzz than the needle.

When I addressed the boy, he glanced up at me with big, brown, innocent eyes. The noise from the conversation beside me had overpowered my voice. “What did you say?” he responded timidly.

I unlocked my wheelchair brakes and rolled towards him, then I repeated my question a little louder. “What are you playing with?”

He grinned from ear-to-ear and held up a collection of colorful shapes. “These are my magnets!” he proclaimed proudly.

The boy proceeded to give me a private show-and-tell demonstration of every object in his backpack. His enthusiasm was contagious. By the end, I also grinned ear-to-ear.

~

The boy’s sincerity and honesty felt refreshing.

When I spoke to him, he could’ve ignored me. He could’ve looked up, seen he didn’t know me, then looked back down. He could’ve nodded his head and pretended he heard me. But in acknowledging me and asking what I said, he validated me.

Some of us could learn from his example.

Oftentimes, when we can’t hear someone in a crowded room, we nod our heads anyway and keep it moving. Do we feel embarrassed to admit we didn’t understand? Or do we just not care enough to be fully engaged and invested? No need to ask someone to repeat themselves if we were only half-listening in the first place!

This is especially relevant for people like me. My rare, progressive, neuromuscular disease called Friedreich’s Ataxia causes patients to slur their speech. Also, many of us have hearing issues.

Getting to catch up with fellow FA’ers at busy, in-person events is a blessing and a curse. We are blessed to share fellowship and camaraderie. We are cursed by the logistical difficulty of conversating in a crowd.

It’s like having a phone call with feedback on both ends.

Can you hear me now? Good.

Sometimes when I speak to people, they only pretend to hear me. I can tell because they wear a kind-but-confused facial expression and say “uh-huh” instead of responding to my remarks. I’d be lying if I said it never hurts my feelings.

But we all do it, myself included. I’d like to break that rude habit, normalized by society, once and for all.

When speaking to fellow FA’ers, I’ve developed a heightened awareness about this, since I know firsthand that it happens to us more than most.

I will ask them to repeat themselves several times if needed. I will lean on their chair and put my ear in their mouth if it comes down to it.

I may have invaded someone’s personal space a few times. But at least I care about what they have to say.