Today was my day to recharge: cleaning, tossing things out, and making space for a fresh start. For me, the new year doesn’t begin on January 1st; it starts on my birthday, January 9th. 🎉 This annual ritual of decluttering feels like hitting a personal reset button, preparing me for whatever’s next.
But this time, it was different.
While sorting through old notebooks, I stumbled into what felt like a personal time capsule—a review of the last 10 to 15 years of my life. Out of nowhere, the tears came. Not the dramatic, shoulder-shaking kind, but those slow, deliberate tears that catch you off guard. Were they happy tears? Sad tears? Honestly, I couldn’t tell.
As I flipped through the pages, memories of Deb and Jamie washed over me—two of my Capricorn diva sisters, two of my closest friends with osteogenesis imperfecta (OI) who are no longer here. Deb and Jamie weren’t just friends; they were kindred spirits, women who understood the peculiar alchemy of living with OI. We shared more than a birthday month or a condition—we shared a vow to live audaciously, to defy the limits the world tried to place on us.
And now, they’re gone.
Here I am, on the cusp of turning 55, missing them fiercely and thinking about where I stand.
For a long time, I’ve wondered: Am I an outlier? Back in the 1970s, my level of OI—what I believe is Type 3—was considered one of the most severe. And yet, I’ve lived a life many people, even those without OI, would call independent. I work full time, drive my own car, go out, and run a nonprofit I’m incredibly proud of. By most measures, I’m thriving.
But when I visit OI support groups, I see something different. Most people my age, for reasons that vary, aren’t living like this. They struggle with their health, rely on others for help, or are forced to step back from their careers and passions as their bodies hit their limits.
That’s when the question creeps in: Am I really alone in this journey?
Surely, there must be others like me—people with severe OI who have found ways to live independently, to keep going, to push boundaries. Maybe they’re out there, too busy living their lives to spend much time on social media. Or maybe, just maybe, I’m walking a path no one else is on.
And if that’s true, what does it mean?
As my birthday approaches, the questions have only grown louder: What do I need to do before my body gives out on me?
It’s not an easy question to ask, but it feels unavoidable now. I know I’m lucky—remarkably lucky—to have gotten this far. But my bones remind me every day that I don’t have forever.
I’ve accomplished so much that I’m proud of. I run AudacityMagazine.com, a nonprofit that amplifies disabled voices. I write for my blog, where I share my thoughts and experiences. I’m working on a mystery novel. I teach. I live.
But even with all of that, I can’t shake the nagging thought: Am I living my purpose? Have I done enough?
These thoughts play in my mind like a favorite (or maybe not-so-favorite) song stuck on repeat. I think about Deb and Jamie, how they lived with passion and purpose despite the odds. I think about the vow we made to live audaciously. Am I doing enough to keep that promise?
Maybe I’ll never have all the answers. Maybe these questions will always linger, chasing me into every new chapter of my life. But if there’s one thing I know for sure, it’s this: I’ll keep asking. I’ll keep pushing forward. I’ll keep living loudly, fiercely, and unapologetically—just like Deb and Jamie taught me.
So here’s to 55. Here’s to the next chapter. Here’s to whatever comes next. 💜
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