If You’d Told Me Twenty Years Ago: Sarcoidosis, Heart Failure, and the Audacity of Still Being Here

If someone told me twenty years ago that today I would have a hole in my heart that would be discovered only after having a mini stroke, I would have laughed.

Not a polite laugh. Not a “that’s funny” laugh. I mean a full, confident, absolutely-sure-you’re-wrong laugh. Because twenty years ago, my body and I were still under the impression that we were collaborators. Partners. A team.

We were not.

If someone had told me twenty years ago that today that same plug would be leaking, requiring me to take Plavix so I would not have a full-blown stroke, I would have laughed.

Because the idea that you could patch a hole in your heart and then have it leak later feels like a design flaw. Like something you’d return with a receipt and a raised eyebrow. “Hi, yes, this was installed correctly, but now it’s doing something new and unhelpful.”

If someone had told me twenty years ago that when they repaired that hole they would discover that my sarcoidosis had spread to my heart, I would have laughed.

Sarcoidosis already had a perfectly good home. It had lungs. It had history. It had seniority. It did not need to redecorate. But sarcoidosis, it turns out, is ambitious. It’s not a minimalist. It likes to explore.

If someone had told me twenty years ago that today I would be living with heart failure because sarcoidosis made itself comfortable in my heart, I would have laughed.

Because “heart failure” sounds like a phrase meant for medical textbooks and whispered hallway conversations. It doesn’t sound like something that belongs to someone who still wants to hike, cook, drive, laugh too loud, and argue about seasoning.

And yet.

Here we are.

If someone had told me twenty years ago that today I would have a defibrillator implanted in my chest to prevent sudden death, I would have laughed.

Because a defibrillator sounds like something that belongs on a wall next to a fire extinguisher. Not inside a person. Not inside me. But apparently my heart needed a supervisor. A lifeguard. A quiet little device whose entire job is to say, “Not today.”

If someone had told me twenty years ago that today I would develop pulmonary hypertension, I would have asked, “What’s that?”

Because it sounds like something you learn about after Googling too aggressively at two in the morning. Not something that becomes part of your everyday vocabulary.

If someone had told me twenty years ago that today walking up a flight of stairs would leave me breathless, I would have laughed.

I’m a chef. Kitchens don’t pause. They don’t slow down because your lungs are having opinions. Twenty years ago, stairs were background noise. Now they are negotiations. Slow, deliberate, deeply personal negotiations.

If someone had told me twenty years ago that today my activities would be restricted, I would have asked, “By whom?”

Because no one hands you a rulebook. Your body just starts quietly revising your life while you’re busy pretending everything is fine.

If someone had told me twenty years ago that I—who never took medication—would one day be taking fourteen prescribed pills a day just to keep going, I would have been on the floor laughing.

Fourteen pills. A schedule. A routine. A level of organization I never wanted but now execute like a professional.

I used to brag that I didn’t even take aspirin. Like that meant something. Like it was a moral stance. Now my medicine cabinet looks like a very polite intervention.

If someone had told me twenty years ago that today I would need portable oxygen for the gym, hikes, and sleep, I would have asked if they were confusing me with someone else.

Portable oxygen sounds fragile. Delicate. It did not match the version of myself I had in my head.

But here’s the thing no one prepares you for: oxygen doesn’t make you weak. It makes you possible.

If someone had told me twenty years ago that today I wouldn’t be able to hike the way I used to, take long drives, run, sled, or move through airports without a little blue card and a separate line, I would have laughed until I cried.

Because those weren’t hobbies. They were freedom. Identity. Proof that my body could carry me wherever my mind wanted to go.

Now everything requires planning. Energy budgeting. Exit strategies.

And that blue card? I’m grateful for it. Truly. But it’s also a reminder that my body now introduces itself before I do.

If someone had told me twenty years ago that today I’d be managing pre-diabetes because of long-term prednisone, I would have laughed.

Prednisone helps. Prednisone also leaves fingerprints everywhere. Appetite. Mood. Blood sugar. Nothing goes untouched.

You learn new numbers. New boundaries. New ways to listen to your body even when it speaks in riddles.

If someone had told me twenty years ago that today I would have an appreciation for every single day, love my wife more deeply than I thought possible, never leave a situation angry, treat people like it might be the last time I see them, notice the beauty in fog, rain, snow, and stillness, cherish energy when it shows up and forgive myself when it doesn’t, and live with the quiet knowledge that being alive is not guaranteed…

I would have said, without hesitation,

“Sign me up.”

Because this is the part no one warns you about.

Yes, things are taken. Yes, limits appear. Yes, life gets smaller in some ways.

But it also gets sharper. Clearer. More honest.

I don’t waste time on grudges anymore. Not because I’m enlightened, but because I understand the cost.

I love harder. I listen better. I notice more.

Nature feels louder now. A foggy morning feels intentional. Snow feels like a pause. Stillness feels earned.

Sarcoidosis took a lot from me. Heart failure complicated everything. But perspective showed up quietly and stayed.

And that—that part—I didn’t expect.

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