the shape of joy

Backpacking in Alaska, August 2017

Joy used to come easily. It arrived in motion—in long hikes under an open sky, in meeting with refugees and hearing their remarkable stories, in sweaty climbs to mountain peaks, in meeting up with old friends, in travel to new places, and in late-night conversations after memorable adventures. It was woven into the rhythm of my life, so natural and frequent that I rarely questioned its presence. I trusted it would always be there.

But living with this disease is like watching joy recede to the horizon. It’s not that it disappears entirely—it doesn’t—but it gets harder to reach. It becomes more fleeting, more fragile, more layered with effort and grief. There are fewer moments when I forget my body and just am. Fewer times when I can be spontaneous or lighthearted. Even when I do something I love, it’s often accompanied by fatigue and frustration.

But still––I love…a lot. I love being outside, especially in the mountains where I feel small and insignificant in the best possible way. I love the feeling of cold air in my lungs and my legs burning as I move uphill, even when those legs don’t work quite right. I love Andrew who makes me feel known and accepted. I love travel—the thrill of a new city, a different landscape, the reminder that the world is wide and endlessly interesting. I love my friends who are such an amazing array of individuals that I learn from them every time we interact. I love my nieces and nephews, their laughter, their wild energy, the way they don’t care if I move slowly or shake a little. And I love connecting with people in ways that feel honest and human.

All of those joys are still in my life. But they don’t come as easily anymore. And yet, even as joy becomes more elusive, it also becomes more precious. A bluebird day in the backcountry, a shared meal with friends, a quiet moment looking out over a valley, an evening on the grass listening to music, a trip somewhere that might possibly be my last time there—I hold onto these moments more tightly now. I don’t take them for granted. Parkinson’s is beginning to take more from me and I hate that, but it has also taught me how to notice joy in its smaller forms: warmth, connection, presence. It has taught me to savor what I can do, instead of mourning only what I can’t.

I would be lying if I said I didn’t miss the ease of how things used to be. Some days, the gap between the life I imagined and the life I’m living feels like a deep crevasse. But on the days when joy breaks through—when the mountains hush the noise in my head, or when someone makes me laugh so hard I forget everything else, or when my smile is big and genuine and shared with others—I remember that joy is not gone. It’s just changing shape.