“I’m Turning to Stone”: Choosing to Live Fully with Scleroderma
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“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.
For Javeeda
This episode is dedicated to Javeeda, a beloved guest 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. She wanted to be remembered as someone who loved and was loved, and that is exactly how we will remember her. May her Build-A-Bears continue on.
You can find Shutes on social media under the name @SheShutes.
For more information on Scleroderma, visit the National Scleroderma Foundation.
If you or someone you know is facing chronic illness, a few tips came up for us in this episode (and honestly in many of our conversations) and we thought we’d share a few here:
For People with Chronic Illness:
Don’t Google your prognosis (we all do it but…it’s never good)
Social media can provide community when physical presence is hard
You’re a whole person, not just your diagnosis
For Supporting Someone with Chronic Illness:
“People who care ask questions” - ask how they’re doing, about specific symptoms
Don’t say “let me know if you need anything” - that puts more on their plate; instead offer specific help like “I can bring dinner Tuesday” or “I can drive you to your appointment”
Bring food (always the right answer)
For more information on the sponsor of this episode,
please visit the Iliff Death Care Collective.
>>Theme Music by Michael Shynes, "The Other Side"<<
Music featured in this week's episode (please follow and support these beautiful artists):
Straight White Teeth - My Love Will Follow Through
Sasha Daniel - Hold
Bunker Buster - Life Goes On
