Lately, as the heat and humidity have rolled in, I’ve been feeling the realities of this imperfectly imperfect body a little more deeply. The truth is, there are days I want to be on the beach with my feet in the sand and salt air filling my lungs. I’m a Cape Cod kid after all. The ocean has always felt like home to me. The sun was always somewhat of a challenge for my body, even long before I understood why, but over the years, that sensitivity has intensified to the point where I can only tolerate short periods before it begins to take a physical toll. The very thing I love most now requires limits, pacing, shade, and careful listening to my body.
There are days I want to be out playing basketball, planting in the garden for hours, walking farther, moving more freely, and simply existing in my body the way I once did. But chronic illness, chronic pain, an ileostomy named Daisy, connective tissue disorders (hEDS), dysautonomia, MCAS, menopause, and all the layers that have unfolded over the years have changed the way I move through the world. Sometimes the more I push, the more my body pushes back.
And yet, I keep showing up.
Not perfectly. Not gracefully every day. But honestly, intentionally, and with gratitude for the body that has carried me through more than I ever imagined it would have to endure. This body may not look the way it once did. It may swell, flush, sublux, exhaust, and protest. It may require more rest, more flexibility, more patience, and more compassion than I ever expected to give myself. But I have learned to speak to her kindly and to thank her for her resilience and all she has survived.
The healing dance continues with all its ups and downs. The ocean still flows imperfectly, and somehow, so do I. To those who now look different than they once did, but whose spirit remains fully intact and vibrant inside, no matter how much it has been pushed to the brink — I see you. We move like the willow, flexible and flowing, bending when we must, but still rooted deeply in who we are.
I still believe in spiraling upward, even if the path looks dramatically different from what it once did. I still believe in possibility. I still believe there is meaning in continuing to create, connect, write, advocate, and share these experiences openly.
Because this was never just about me.
It’s for every person navigating chronic illness, disability, grief, change, pain, or a body that no longer behaves the way the world expects it to. It’s for the people who keep showing up anyway. The people adapting in real time. The people learning to hold both heartbreak and gratitude at once.
And no matter how long this memoir takes — emotionally, physically, creatively, or financially — I will reach the finish line. Perhaps not on other people’s timelines, but on my own. And that is enough.
