Breathing Lessons From a Not-So-Normal Life With Sarcoidosis and Oxygen Tanks

I’ve always known I wasn’t built quite like the rest of you Earth people. When I was a kid and my sense of humor made adults whisper things like “Is he…okay?”, I had a whole explanation ready: the soul meant for Earth and the soul meant for Pluto collided on their way out of the cosmic parking lot, and I—Pluto’s soul—got shot straight into this planet by clerical error. It made sense then, and honestly it makes even more sense now because nothing about my body or my medical chart has ever behaved like it belongs on Earth. The universe handed me a warranty card that said “No returns, no exchanges, good luck.”

Fast-forward to Monday, when I shuffled into my primary pulmonologist’s office carrying all the charm of someone who knows the news won’t be great. I’d had a stress echo last week, and my cardiologist—who practically has me on speed dial at this point—didn’t love that my oxygen saturation dropped to 77% during the test. Seventy-seven percent. That’s the kind of number that makes medical professionals tilt their heads and say things like, “Huh,” which is never what you want to hear when your heart already behaves like an elderly raccoon on decaf.

But my pulmonologist isn’t the head-tilting type. He’s the one doctor who talks with me instead of at me, which means when he calls something “concerning,” it’s time to listen. He’s the same doctor who, years ago, refused to accept that my mini-stroke was caused by “sleeping weird.” He pushed for the tests that found the hole in my heart. He’s the reason I’m still here, complaining affectionately about prednisone and pretending I’m fine. So when he told me he was concerned but not worried, I almost melted to the floor with relief.

He reminded me—again—that I’m a medical mystery. My six specialists apparently discuss me like I’m a team project they didn’t ask for. They all agree that I shouldn’t be functioning as well as I do. I told him that’s because I’m from Pluto. He didn’t even argue. According to the whole squad, someone with my combination of lung sarcoidosis, cardiac sarcoidosis, class-three heart failure, pulmonary hypertension, and a PFO that’s still trying to decide whether it wants to close should not be strolling around like I do. I should be wrapped in a blanket somewhere, hissing at sunlight and requesting snacks.

And yet, from the outside, I look…normal. I walk briskly. I joke around. Unless you spot the oxygen tubing—which, yes, is now practically glued to me—you’d never know my lungs sometimes behave like they’re filled with tissue paper. I’ve been on prednisone for twenty years now, long enough for it to feel like an involuntary lifestyle choice. I’ve gained weight, sure, but not nearly as much as I could have. My doctors call that “remarkable.” I call it “being Caribbean and stubborn.” My blood pressure occasionally falls so low I could be mistaken for a fainting goat, and yet I stay upright. My lungs, despite the scarring, still sound clear. Every doctor I see listens to them, pauses, and mutters some version of “How?”

But here’s the part where my cosmic misplacement and medical chaos collide: I have oxygen. I need oxygen. And I don’t use it enough. Nowadays I practically need it all the time, yet I still try to sneak around without it like a teenager hiding a vape pen. It’s not embarrassment—not anymore—it’s the psychological jab, the reminder that I’m not the man I used to be. I know better. I do. But sometimes that green blinking number feels like it’s flashing “broken.” So I resist. Even when resisting helps no one, least of all me.

My doctor explained that my O₂ levels drop even during simple things—walking through a mall, standing too long, living my everyday life like a person who still believes he’s younger than his medical chart. He told me, simply: “Your organs can’t keep fighting without help.” Read: if I keep pretending I don’t need oxygen, everything will fall apart faster than my cardiologist can print out another test order.

And yes, hauling oxygen around is a pain. Even with the newer, lighter equipment, it’s not exactly a fashion accessory. People stare. People stare a lot when a “younger” man is wearing an oxygen tank. But my wife—who always looks at me like I’m still the same man she married—reminds me she’s never embarrassed to walk beside me, tubes and tanks and all. If she’s not embarrassed, why should I be?

The truth is simple: the hassle of oxygen is nothing compared to the alternative. And every time I choose to use it—even when it feels heavy or humbling—I’m choosing more time with her, more stories to write, more sarcastic survival monologues to deliver to my readers, and more chances to prove that even a misplaced Plutonian soul can make something meaningful out of this strange, stubborn life.

If you relate to this kind of messy honesty about chronic illness—or if you just like cheering on a chef who keeps outwitting his own lungs—leave a comment or hit subscribe. I’d love to have you here.