wear the dress, go to the party

Athens, Greece- August 2018

When you live with Parkinson’s disease, you learn quickly that time is not something to waste. The future is no longer an open horizon stretching endlessly ahead. It’s something hazier, less predictable, and sometimes, painfully fragile. So I do my best to seize every minute, every invitation, every sliver of joy. That’s why, when there is a girls' trip to Santa Fe, or a last-minute hike over the pass, or a birthday dinner down the street, or a friend’s wedding in France, or Italy, or Greece, or Kentucky, or Maine, or Sweden or really anywhere (can you tell I like weddings?;)—I wear the dress. I go to the party. I dance–sort of.

That doesn’t mean I don’t say no. I say no far more than I want to. My body forces me to. There are days when getting out of bed feels like climbing Everest. There are hours when I try to will my limbs into movement and they refuse to cooperate. Saying no breaks my heart, every single time. Because I want to be there. I want to show up for people I love, for moments that matter, for circumstances that are fun-- even for ones that aren’t. But Parkinson’s doesn’t ask permission, and it rarely compromises.

Still, for the last eight or nine years—while most people didn’t even know I had Parkinson’s—I’ve lived like someone on borrowed time. I’ve said yes to almost everything I possibly could. I’ve traveled the world, worked really hard, tried to show up for people wherever they are, and gone on adventures that have created lasting memories. Friends joke that they feel tired just hearing about my schedule. But I had to do all those things and go all those places because I don’t know how long my body will let me keep saying yes. So while I can, I do. I move. I celebrate. I show up.

Speaking of showing up, the photo above is from a dear friend’s wedding in Greece. I am being dipped, looking more awkward than elegant. Both the bride and my handsome “date” in the photo are friends from graduate school 20 years ago. It was so wonderful to see them after too many years. And it wasn't just them. Even more of my amazing former classmates were there— having flown in from all over the world. 

I was tired, jet-lagged, and always having to negotiate the invisible demands Parkinson’s was placing on my body. I also spent too much time worried about if people were going to notice and if so, what I was going to tell them. But there was no way I was going to miss a reunion like that while at the same time being able to celebrate my friend’s love and good fortune.

So, I wore the dress. I went to the party. I toasted love and friendship and danced. Indeed, I danced into the early hours of the Athens morning—and not well. I danced like Elaine from Seinfeld before Parkinson’s, and now… let’s just say I’m not winning any awards. But I danced anyway. Because movement, joy, and celebration are acts of defiance. And because showing up for other people’s joy makes life feel a little more beautiful, even when my own feels complicated.

One of my very best and oldest friends runs a gorgeous lifestyle blog titled Say Yes. It’s a catchy name—and it works—but those two words have stuck with me in a deeper way, especially now. Say yes. I carry them with me like a quiet mantra. A reminder. A challenge. A way of being. Because even if my life now requires saying no more often than I’d like, I still do everything I can to say yes.

So wear the dress. Go to the party. Take the trip. Say yes and hold those moments close. You don’t need to move perfectly—you just need to move…and show up.