Trikafta, Living Longer Than You Expected, and Using the Time You Have with Author Cindy Baldwin

This week on Chronically Candid, Morgan sits down with Cindy Baldwin — disability activist, award-winning children's author of Where the Watermelons Grow and No Matter the Distance (the first novel about cystic fibrosis written by an author with CF), and founder of The Salty Pen, a writing support community for writers with CF across all genres and experience levels. The conversation they have is the kind that starts mid-thought and never really stops — which, if you know Cindy and Morgan, is exactly how it was always going to go.Cindy was diagnosed with CF at six months old in an era when that was rare, and she spent much of her childhood genuinely unaware of what the disease would mean for her future. She learned that CF was life-shortening at age 13 — not from a doctor, not from a parent, but from reading a Redbook magazine article written about her own family. If that's not a story that only someone with a chronic illness can tell, nothing is.From there, the conversation moves through so much territory: being one of the first three women in the world to get pregnant on a CFTR modulator (yes, really), navigating a medical team who were just as uncertain as she was, watching modulator babies go from "no data exists" to "there was finally a baby boom." Cindy shares what it was like to be the person people found on Google when they searched "Vertex modulator pregnancy" — and how Trikafta eventually made that a less lonely search for everyone who came after.But this episode really opens up when Morgan and Cindy get into what life looks like when the disease you organized your entire identity around starts to look different. What do you do with the urgency that chronic illness installs in you — the need to hurry up, get it done, find the person, publish the book, have the baby — when suddenly the timeline shifts and you're not in the last chapter of your life anymore? Cindy describes a genuine identity unraveling when her daughter turned eight and she realized: she might actually be around for a long time. That realization was harder than she expected.They dig into the strange grief that can come with getting better. Missing the hospital — the structure, the being-taken-care-of, the world where everyone already knows what CF is and you don't have to explain yourself. The weird guilt of feeling like you can't fully claim your CF identity anymore when you're healthy. The way Trikafta didn't fix fatigue, and what it means to be a writer when your brain force-quits on you after just a few hours of being awake.There's also a genuinely fascinating thread about creating while chronically ill — how Cindy learned to write entire books in ten-minute increments while her toddler wasn't napping, and why she believes the most important thing she does by showing up online is simply be the person she didn't have growing up: proof that you can pursue something creative and meaningful, even when the conventional writing advice has absolutely nothing to say to you.The episode closes with Morgan's "fun Q&A" (which, as always, is not really fun in the light and fluffy sense — it's more that it tends to make you examine your soul a little). Including the question that never gets easier: would you remove chronic illness from your life if you could?Cindy's answer is worth sitting with.Cindy's poetry collection Don't Live Like You Are Dying is forthcoming.Find Cindy and The Salty Pen online, and support Morgan's work by reading and subscribing to Chronically Candid on Substack at morgannbarrett.substack.com.Support my work by reading & subscribing to Chronically Candid on Substack at morgannbarrett.substack.com Hosted on Acast. See acast.com/privacy for more information.