When I first started telling people I had Parkinson’s, their reactions were a mixed bag. One friend shrugged and said, “Oh, bummer,” like I’d told them I lost my keys, not that my nervous system was on a slow, steady decline. Another said they’d read a little about it and reassured me, “Well, it’s not fatal, right? So, that’s good!”—a sentiment I appreciated for its optimism, even if it didn’t quite hit the mark. And then there was the humor. One friend sent me a video of myself trying—and failing spectacularly—to pour a drink without spilling. I laughed with them because honestly, it was funny. Humor felt like the safest place to land back then, like the only way to stay upright while the ground shifted under me.
And I don’t blame anyone for how they reacted. Who has a script for that moment? How are you supposed to respond when someone your age—a person who’s not even close to middle-aged—is diagnosed with a disease that’s supposed to belong to retirees? I get it. If the roles were reversed, I’d probably fumble my way through it too.
What stings, though—what I don’t talk about often—is how the questions stopped coming. In two years, only a handful of people have circled back to ask, “How are you doing with it? How’s everything going?” It’s this strange, unspoken thing. On one hand, I’ve made it clear I don’t want pity, and I certainly don’t want people treating me differently. But on the other, there are days when I wish someone would check in—not out of obligation, but because they were truly thinking about me.
I try not to dwell on it. Everyone’s busy. They’re raising kids, buying houses, moving forward in lives that feel so impossibly normal from my vantage point. And honestly, I hate the selfish part of me that sometimes feels resentful, that wonders why their lives get to stay on track while mine took a detour I never signed up for. But they don’t owe me anything. I remind myself of that. Everyone has their struggles, even if they’re not wearing them on their sleeve. Life’s just messy like that.
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