When You Wake Up and Realize Life Is Still Pretty Damn Awesome (Even With Sarcoidosis)

There are mornings when you wake up already tired, already negotiating with your joints, your lungs, your heart, and your general willingness to participate in the day. And then there are mornings like this one, where you wake up and—before the checklist of symptoms fully loads—you get smacked with a quieter, steadier thought: Oh. I’m still here. And somehow, things are still okay.

Not “everything is perfect” okay. Not “I’ve transcended illness and now float through life on a cloud of enlightenment” okay. Just… solid. Grounded. Steady. The kind of okay that sneaks up on you when you aren’t looking for it.

I woke up this morning with that realization, and it stopped me in my tracks. Life—this demanding, unpredictable thing—has a funny habit of continuing to show up for me, even when I’m convinced I’ve reached the end of my rope. Especially then, actually.

And listen, before anyone thinks I’ve lost touch with reality, I haven’t. I have a lot on my plate. A boatload. Responsibilities, appointments, medications, obligations, expectations. The usual adult assortment, plus the deluxe chronic illness add-on package. Yet somehow, no matter how tangled things feel in the moment, they keep working themselves out. Not always on my timeline. Rarely in the way I imagined. But in a way that, looking back, makes an odd kind of sense.

Living with sarcoidosis has a way of sharpening your memory. You remember dates other people forget. Years become landmarks. Symptoms attach themselves to seasons. Prognoses stick with you in ways casual words never could.

Back in 2007, I was told some things that would have flattened a lesser version of me. I was told I’d likely need a heart transplant by 2012. I was told I had a 10% chance of surviving to 2017. Ten percent. That’s not a margin you hedge your bets on. That’s the kind of number that changes how you look at ceilings at three in the morning.

And yet—here I am. Same heart I came into this world with. Still ticking. Still stubborn. Still apparently uninterested in cooperating with dire predictions. It’s 2025 now, and I’ve outlived every grim statistic that once hovered over my head like an unwanted weather report.

What often gets lost in those survival numbers, though, is the long stretch in between. Almost two decades of living with this disease has not been a straight line. It’s been one thing after another. Sarcoidosis rarely travels alone, and it seems to enjoy bringing friends.

There have been complications, new diagnoses, unexpected turns—each one arriving with its own set of instructions, fears, and recalculations. And just when you think you’ve adjusted to the current version of your body, life taps you on the shoulder and says, Actually, we’re doing this now.

Last June, that tap came in the form of a brain tumor.

Benign, thankfully. But still a tumor. Still something living in your head that doesn’t belong there. Still something that, if it grows, could quietly and efficiently wreck havoc on daily life. Balance. Hearing. Function. Independence. All suddenly feel a little more fragile when you’re reminded how much is packed into such a small space.

That’s the part people don’t always understand. “Benign” doesn’t mean harmless. It means not trying to kill you directly. Everything else is still up for negotiation.

So no, this hasn’t been one dramatic hurdle followed by a victory lap. It’s been endurance. Adjustment. Learning how to absorb new information without letting it flatten you. Over and over again.

Am I lucky? People love that word. It’s neat. It’s simple. It wraps everything up with a bow and lets everyone move on comfortably. But I don’t believe in luck. Luck feels passive. Accidental. Like you tripped over survival while walking to the mailbox.

What I believe in is faith. Not the loud, performative kind. The quieter kind. The kind that says: Ask clearly. Ask honestly. Ask knowing that whatever answer comes back is the one you’re meant to work with.

That doesn’t mean you always get what you want. Trust me, if it worked that way, my lungs would have gotten the memo years ago. What it means is that when something doesn’t happen the way I hoped, I’ve learned—slowly, stubbornly—to pause before declaring it a failure. Life has a way of rerouting you, and sometimes the detour is where the actual point was hiding.

And through all of this—every diagnosis, every recalibration, every moment of quiet fear—I’ve never been walking alone.

I am blessed beyond measure to have my wife on this journey. She is my best friend. She is stronger than me by far, even when she doesn’t realize it. She carries more than her share without ever keeping score. She steadies the ground when mine feels untrustworthy. She believes when I’m tired of believing.

Without her—honestly—who knows if I’d still be here. That’s not drama. That’s truth.

Chronic illness strips away the illusion of control real fast. You can do everything “right” and still wake up breathless. You can follow instructions, take the meds, show up to the appointments, and your body can still decide to freelance. Sarcoidosis doesn’t care how productive you were yesterday. It does not respond to bargaining. It definitely doesn’t read motivational quotes.

What it does do is force perspective on you.

When you’ve been told you might not be around for certain milestones, you start noticing the small ones more. The ordinary moments stop feeling ordinary. A quiet morning. A shared glance. A body that cooperates just enough to let you move through the day. These become victories, even if no one else sees them as such.

There’s also something humbling about realizing how often things do work out, even when you’re bracing for impact. I’ve had days where I was convinced everything was about to fall apart, only to look back later and realize it… didn’t. It shifted. It rearranged itself. It landed differently. But it didn’t collapse.

That realization doesn’t make you fearless. It makes you steadier.

Gratitude in the face of chronic illness doesn’t mean denying the hard parts. I can be grateful and exhausted. Hopeful and annoyed. Thankful and deeply unimpressed with my own internal organs. These things coexist just fine.

Sarcoidosis has taught me that joy doesn’t require perfection. It requires presence. It requires noticing what’s still working instead of constantly tallying what isn’t. It’s the difference between living in permanent anticipation of the next shoe dropping and realizing you’ve been standing upright through every drop so far.

I don’t wake up every day feeling inspired. Some mornings I wake up feeling like a chef who’s been asked to cook a twelve-course tasting menu using half the ingredients and a temperamental stove. But even then—especially then—I can usually find a moment where life taps me on the shoulder and says, Hey. You’re still in this.

And I am.

That doesn’t mean I pretend the future isn’t uncertain. It absolutely is. But it always was. Sarcoidosis just made that impossible to ignore. The truth is, none of us are guaranteed anything beyond the moment we’re standing in, and somehow knowing that has made this moment feel richer, not smaller.

So when I say life feels awesome today, I don’t mean flashy. I don’t mean effortless. I mean resilient. I mean stubbornly continuing to offer me reasons to stay engaged, curious, and occasionally amused by the sheer audacity of it all.

If you’re reading this while living with sarcoidosis or another chronic illness, maybe you know this feeling too—the quiet gratitude that sneaks up on you when you least expect it. The realization that you’re still here, still adapting, still finding meaning in places you never thought to look.

That’s not luck.

That’s life, meeting you where you are and asking—gently but persistently—if you’re willing to keep going.

Today, at least, my answer is yes.

If this resonated with you, I’d love to hear your thoughts. Share your experience in the comments—especially those unexpected moments when life surprised you in a good way. And if you haven’t already, consider subscribing so you don’t miss future reflections on living with sarcoidosis and chronic illness from the inside out.