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Happy Saturday! Overtime is for everyone. If you’re a Bulwark+ member: thank you. If you’re not, there’s no better time to subscribe to Bulwark+ than today. If you like today’s issue, you can share this newsletter with someone you think would value it.
This week’s Overtime is going to be a bit different. Come with me on a brief journey to remember our friend Shane DiGiovanna.
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Shane DiGiovanna wanted to be an astronaut. From the time he was a child, reading Cosmos at age 7, Shane was captivated by the same sense of wonder that has driven generations of explorers—from NASA scientists to backyard stargazers.
As I sat on the couch Wednesday in Cincinnati to watch the launch of Artemis II with my daughters—watching them watch in wonder—I couldn’t help but hide a tear or two, as I knew Shane had the best seat in the house. He died Monday, March 31, at the age of 27 and a half.
Shoot for the moon, the saying goes, and you’ll end up among the stars. Shane’s epidermolysis bullosa (EB), a lifelong incurable condition that causes incredibly fragile skin, made becoming an astronaut impossible. But it never stopped him from reaching for it anyway. He experienced more space-related activities than most people ever will: weightless flights with his family; seeing the Mars rover Curiosity in the clean room; meeting the people who built it; standing alongside astronauts Jim Lovell and Gene Cernan at 14 for a press conference announcing the launch of a children’s health fund created in honor of Neil Armstrong at Cincinnati Children’s, the very place that helped make Shane’s extraordinary life possible. Whenever he could, Shane put himself as close to the center of that universe as possible.
Shane wrote: “Star Trek showed me a world where anyone can explore the stars, no matter who you are. It made a big difference to me when I was growing up. I would (and still do) distract myself during my bandage changes and dream of being a Starfleet captain.”
I first met Shane in person after he emailed last spring to mention he’s a big-time Bulwark reader and a fellow Cincinnatian. He told me that space was his “passion,” an early and enduring fascination that clicked with his love of language, learning, and the big questions about how the world works. Whether it was space, politics, political maps (a subject area he was known for commenting expertly about on Twitter), or wanting to selflessly help those afflicted by EB, Shane’s intelligence and passion for life always shined through.
Shane and his mother, Patsy, sat down with me last year for a profile. They gave nearly three hours to me and my friend, Bulwark reader and photographer Aaron Bludworth. Shane was clear-eyed about his health; in addition to his EB, he had been dealing with cancer treatments for a few years. He knew his time was limited. But he wanted to spend his remaining days fighting RFK Jr., Elon Musk, and DOGE, not just for himself, though there was real concern about what their depredations meant for him, but for others like him. Shane carried himself like a Starfleet captain, looking out for his fleet: people with a long road ahead.
We also did a video interview so his fellow Bulwark fans could see his face and hear him speak.
Then, last fall, Shane entered hospice—and took the opportunity to throw himself an amazing celebration of life while he was still in shape to do it. People came from all around the pale blue dot to be there. Despite us all knowing the reason we were there, it was hardly somber; hell, it was more fun than most weddings I’ve ever been to. (You can read Shane’s speech here.)
But Shane was still not done: In the last months of his life, he worked with our congressman, Greg Landsman, on legislation (H.R. 7877) to help others with EB. He got to become texting buddies and zoom with former Speaker of the House Nancy Pelosi. Greg said that what stayed with him most from their conversations was simple: “Just do the right thing. Always do the right thing.”
If you’d like to read Shane’s obituary and see the memories from his loved ones, that’d be a great way to honor Shane. And if you’d like do something more concrete to honor his memory, there are two things you might consider:
First, you can donate to his endowment at Cincinnati Children’s: Doggie’s Friends.¹ Shane helped start Doggie’s Friends, an effort to get comfort items to children facing the kinds of long, isolating hospital stays Shane knew well. The idea, he said, was to focus on “the kids who are dealt a really bad hand from the beginning”—not the routine injuries, but “the 5-year-old who is in their twenty-seventh surgery . . . and desperately needs a friend to cuddle with and to talk to.”
The other thing you could do doesn’t cost anything: Get your member of the House to cosponsor his namesake bill, H.R. 7877, the Shane DiGiovanna Act.
In the year or so I got to know Shane—in fact, from the very first email he sent—I knew heartbreak was on the horizon. But neither that reality, nor the condition that debilitated Shane, diminished him. Most notably, Shane had his own gravity: He pulled you in. You had no choice if he wanted you in his orbit.
“A short but well lived life” a friend and fellow Bulwark reader observed. “Incredible, the gifts we receive when we finally open our eyes.” Indeed.
Like all who were pulled into Shane’s orbit, either by chance, fate, or luck, I will miss our friend, and won’t forget him. The Bulwark community is richer for having him as a shining part of its tapestry.