Laughing Through the Shock: How Humor, Heart Failure, and Sarcoidosis Taught Me to Plan for the Inevitable

I’ve always lived my life the only way I know how—with humor, irreverence, and a gentle refusal to let fear boss me around. I’m the person who can be knee-deep in a crisis and still find the ridiculous side of it, mostly because if I didn’t laugh, I’d probably spontaneously combust. Humor has been my pressure valve, my shield, and occasionally my weapon of choice when life starts acting like it owns the place. And nothing has sharpened that humor quite like the day I learned my heart had decided to stop being a team player while my sarcoidosis gleefully spread to yet another organ on its own tourism tour.

When the cardiologist told me I needed an AICD—a device meant to jolt my heart back into rhythm should it decide to take a coffee break—I did what any sensible chronically ill chef with questionable coping strategies would do: I immediately turned the whole thing into a running joke. I told my wife that when I eventually dropped dead, my AICD would keep zapping me back like some deranged, low-budget remake of “Weekend at Bernie’s.” I even started calling myself ICD Man, the hero who simply refused to die on schedule. We both thought it was hysterical, because dark humor is our love language, and honestly, it beats sitting around crying into a bowl of gluten-free cereal. Some people might call it morbid. I call it survival.

But every once in a while, humor stops being a joke and edges disturbingly close to reality. One night we were watching an episode of Nurse Jackie, and a man with heart failure started going through the very thing I used to laugh about—organ by organ shutting down while his AICD stubbornly refused to let him go. Every time his heart tried to stop, the device snapped it back like an overzealous personal trainer yelling, “Again!” The only way to let him pass peacefully was to deactivate the AICD with a giant magnet. His partner refused, terrified of making the wrong decision. So the AICD kept firing, over and over, until the battery finally gave out.

It shook me—not in a dramatic, fall-to-the-floor way, but in that quiet, internal “Oh… this could actually happen” kind of way. The kind of truth that hums in your bones. It made me think about what would happen if I couldn’t speak for myself. What if my wife was too overwhelmed or unreachable? What if the hospital didn’t know my wishes? What if I ended up with an AICD pressing the “retry” button on my life long after I wanted the episode to end? I’m not about that life. Or that afterlife.

That’s when I realized living with a chronic illness isn’t just about managing symptoms or negotiating with your lungs like they’re rowdy toddlers. It’s about planning—real planning—for the moment when you can’t argue with anyone anymore. Enter the hero of this story: the Advance Directive, also known as the Durable Power of Attorney for Health Care, also known as “the piece of paper that keeps everyone from panicking and making wild guesses at 2 a.m.”

Here’s the thing people don’t tell you: it’s not enough to have the document. You have to make sure it’s findable. Accessible. Impossible to misplace. Because if the person holding your wishes is stuck in traffic, asleep, or on a cruise without cell service, you’re out of luck. So when you set up your Advance Directive (and you absolutely should), get it notarized and send a copy to every doctor you regularly see. If you have a cardiologist, pulmonologist, rheumatologist, primary care doctor, and a partridge in a pear tree, send it to all of them. Ask each office to file it permanently so if you end up in their hospital system, your wishes appear faster than a nurse asking you to change into a gown.

Then go one step further: make yourself a laminated card—yes, old-school laminated—with a line that basically says, “I have an Advance Directive. Call Dr. So-and-So.” Stick it in your wallet next to your ID so it’s seen immediately in an emergency. Make it impossible to miss. Think of it as your personal “Do Not Guess My Ending” card.

Because let’s be honest: if you live with a chronic illness long enough, odds are you will end up in the hospital at some point. And when that day comes, you deserve to have your choices respected—not debated like a group project among people who never read the instructions.

You’ve lived your life your way. Your care should follow the same recipe.

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