When COVID struck Rebecca Saltzman’s family, the virus unmasked a life-changing discovery: her husband and two of their kids had genetic heart disease. The kind where people drop dead. As their healthy wife and mother, Saltzman had a new role too—guiding her family through what Susan Sontag called the Kingdom of the Sick. In this column, she’ll explore the anthropological strangeness of this new place, the mysteries of the body, and how facing death distills life into its purest form: funny, terrifying, and sublime.

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Read Part I, Part II, Part III, and Part IV.

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Previously on Family Tours in the Kingdom of the Sick: On the evening of December 5, 2022, I arrived home from work and found my husband sitting on the couch with a strange expression on his face.

“I don’t feel well,” he said, touching his chest. “Something happened today. I was out walking, and I suddenly felt faint and collapsed into a wall.”

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In a marriage, there are times when you have to respect your spouse’s feelings and times when you tell them to shut the hell up and do what you say. December 5 was the second category.

“You have to go to the ER,” I told Josh. It was 7 p.m., and we were facing off in the living room.

“No, it’s no big deal,” he said. “I feel fine now.”

“You need an EKG,” I said. “It will just be a quick ER trip, and then we can come home.”

In the months since our discovery of the long QT and Josh’s positive genetic test for hypertrophic cardiomyopathy, we had both coped with our stress and fear in different ways. I threw myself into learning everything I could. Josh chose the opposite approach. He missed the cardiology appointment I had scheduled for him, and never rescheduled it.

I can’t say for sure that my approach was better. There is certainly such a thing as too much googling. But my googling taught me this important fact: cardiac syncope—fainting because of heart arrhythmia—is a significant predictor of sudden death.

Josh is one of the most hard-headed people I know. But in this case, I wasn’t budging.

“I’ll go with you,” I said. “But your ass is going to the ER.”

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There are many perks to having heart disease. Did I say many? There’s really just one: you never have to wait at the emergency room.

Even in New York City, where ERs are overflowing, heart disease is the VIP pass. The velvet rope lifts. You instantly bypass the plebs in the waiting room and are ferried through the halls to the EKG machine (bottle service not included, but you can get some of that good hospital ice). It’s never reassuring when you don’t have to wait at the ER, because it means the staff, who have seen everything, think there’s a good chance you might die.

I folded myself into a little corner of NewYork-Presbyterian/Columbia’s Barbara Walters Acute Care Center, balanced between a chair and one of those ugly pastel hospital curtains, as a nurse hooked Josh up to the EKG. Modern EKG machines run with computer algorithms that give medical staff an immediate, if imperfect, interpretation of the results, printed out on the top. If your heart seems normal, it will say NORMAL EKG.

Josh’s strip printed out with a whole catalog of problems listed at the top. ABNORMAL EKG.

“I’m admitting you,” the ER physician said with a furrowed brow. “Your EKG is weird. It’s just… weird.”

It’s also never reassuring to be weird in the medical world. Boring is good. Weird, interesting, remarkable? All a bad sign.

As soon as a bed opened up, Josh and his weird heart settled into the cardiology unit (Barbara Walters had her name on the wall here, too). It was December, so an electric menorah perched on the nurse’s station, and a tinsel Christmas tree was taped over the crash cart.

Josh’s room had a view of the hospital complex, where we could watch miniature people cross three different levels of glass skybridge. A giant banner outside extolled us to BE AMAZING. Pigeons gathered on his windowsill, surveying us with their orange eyes.

We recited our whole story to the nurses, the residents, the attending physicians. The long COVID and the long QT and the genetic testing. Josh’s chest X-ray and echocardiogram in the ER had also been sus, as the kids say. The cardiology team scheduled more tests.

Josh is a professor with a PhD in math. At the time he was admitted to the hospital, he was also the president of his university’s faculty union. He now set about optimizing his time in the hospital.

“Are you unionized?” he asked his nurse. Upon hearing that she was, and that the union was currently in contract negotiations with the hospital, he began encouraging the nursing staff to go on strike—a questionable strategy for getting the best medical care, but labor rights, he decided, came first.

He dutifully measured his urine output and entered into a competition with himself, each day trying to best the number of milliliters voided by Yesterday Josh. You learn a lot about the person you married in times of hardship. I married the kind who enjoys quantifying his pee.

In cardiology, patients spend all their time on continuous wireless EKG monitors. This means they cannot leave the cardiology department, or they will fall out of range. Like a dog trapped behind an invisible fence, Josh paced the halls, learning exactly how far he could go before someone would come running.

He discovered a conference room with a whiteboard and began scribbling equations across it, Good Will Hunting–style, until a nurse caught him.

“Sir, you’re not supposed to be in here,” she said.

“No, it’s OK,” Josh explained. “I’m a doctor.”

(Of mathematics.)

“You may be a doctor, but here you’re a patient.” She shooed him out of the room.

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Days passed, then a week. Our “quick trip” to the ER had turned into a long stay. Love means never saying, “I told you so.” But I’m not that good of a person, so I said it anyway.

Every morning, I woke up, got my kids ready for the day, waved goodbye to Iris and Gabriel as they walked to school together, traveled downtown ten blocks to drop Gus off, turned around to go another sixty blocks uptown to visit Josh, took the subway sixty blocks back down to pick Gus up, verified that my other two kids made it home, fed them dinner, and either went back to visit Josh again or simply collapsed with exhaustion. We didn’t have family nearby, but we were fortunate to have a network of friends bringing food over, sending us delivery meals, and keeping us well stocked with DoorDash gift cards (including some fellow McSweeney’s writers—you people are funny and kind??).

Additional medical testing had confirmed that Josh’s genetic hypertrophic cardiomyopathy was, in fact, causing physical disease. The wall of his heart was thickening.

His continuous monitoring revealed that he was having multiple arrhythmia episodes called nonsustained ventricular tachycardia (NSVT). This meant that his heart would suddenly beat fast and erratically. Although his episodes were all self-terminating, NSVT can lead to life-threatening arrhythmias and cardiac arrest, which meant he couldn’t be discharged until his doctors had a better idea of what was going on and how to treat it.

But life had thrown us another plot twist.

In addition to the HCM and the mystery long QT, Josh’s echocardiogram showed something else: he had been born with a congenital defect in his aortic valve. This valve regulates the flow of oxygen-rich blood from the heart into the aorta, the giant artery that carries that blood to the rest of the body.

A typical aortic valve has three leaflets that open to allow blood into the aorta and then close snugly to prevent the blood from falling back down into the heart. Josh’s valve only had two leaflets. And although these two leaflets had been doing their best for all of his thirty-nine years on the planet, they were now deteriorating. Blood was falling back down into his heart, which had to work three times as hard to compensate, and it was struggling to keep up with the task.

His heart was failing.

Not only that, but the increased pressure on his aortic valve had also caused an aortic aneurysm to form. An aneurysm means that an artery has grown wider than normal, which weakens the walls and makes it susceptible to tearing open. A tear in the aorta is highly lethal.

The cardiology team marveled. A congenital defect. A separate genetic disease. An unexplained long QT that might represent a third genetic disease. And an aneurysm. Josh’s heart wasn’t just weird. It was one in a million.

“Don’t google the surgery for this,” my friend Mindy, who works in health care, warned me.

“Too late,” I said.

To save Josh’s life, a team of surgeons would have to saw through his sternum, and stop his heart. While he was on a bypass machine to keep him alive, they would then have to repair or replace his aortic valve and reinforce his aorta with mesh. Recovery would be long and hard. But without the surgery, he likely wouldn’t live to see forty.

The good news was they didn’t think the valve or aneurysm were imminently going to kill him, so he didn’t need emergency surgery. But it was too urgent to wait very long.

Josh looked and felt healthy. It was impossible to believe, as we walked the hallways of the hospital together, that he was so sick. Through the windows, we could see the lights of the city blink on, the starry cables of the George Washington Bridge, the ribbons of headlights streaming across the Hudson River.

The biggest challenge of our life together now lay ahead of us. I kissed him goodnight and left for the subway to travel alone those fifty blocks home.