“I’m part gargoyle is what I tell people. Because I’m turning to stone. I literally am.”

Shutes was living the dream—college basketball national champion, Player of the Year, in the best shape of her life—when strange symptoms started appearing. Numbness in her hands. A sore that wouldn’t heal. She was initially misdiagnosed with lupus before a doctor recognized the signs and finally told her the truth: she has scleroderma, a rare and incurable autoimmune disease.

Scleroderma causes the body to produce too much collagen, creating a kind of fibrosis that hardens the body from the inside out. As Shutes says with what you’ll learn is her incredible sense of humor—“I’m part gargoyle!” But of course, beneath that humor is the difficult reality of watching your hands curl into permanent contractures, your jaw dissolve, your lungs stiffen to 56% capacity, and food getting stuck in an esophagus that can no longer move it along.

In this deeply honest conversation with Cody, Shutes explains the daily and long-term realities of living with this rare and rarely discussed disease, as well as the isolation that persists even when you have community, the relationships that end because people can’t handle your new reality, the exhaustion of coordinating every basic need, and the choice between living safely or living fully.

She also opens up about navigating eating disorder recovery while her disease makes swallowing nearly impossible and feeding tubes loom on the horizon. She talks about losing the athlete’s body she once had, the grief of not being able to play basketball with her son, and the intentional choice she makes every day to go hard, crash, and get back up again. Because for her, it’s the living that’s most important. Consequences be damned...or at least accepted.

Follow Shutes on social media @SheShutes

This episode is dedicated to Javeeda, who put us in touch with Shutes. Javeeda was a beloved guest of Season 2 and a dear friend of the podcast. She died

This episode is dedicated to Javeeda, a beloved guest of Season 2 and dear friend of the podcast who connected Shutes with us. Javeeda died last week after living with her own rare cancer for many years.