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, Part IV, and Part V.

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“Has anyone in your family ever died suddenly at a young age?”

This is one of the hallmark questions in cardiology. A person’s family tree can offer essential clues to their own level of risk. Because sudden arrhythmic death syndromes (SADS) are typically inherited as dominant genes, they will often reveal themselves in the long arc of the past.

Josh and I had answered this question many times: “No, nothing like that.”

As Josh remained hospitalized in NewYork-Presbyterian’s cardiology ward, his doctors were trying to parse out exactly what was going on with his heart. We now knew that he had inherited hypertrophic cardiomyopathy from his maternal side. We also knew that he had a congenital defect in his aortic valve. But what was causing his recurrent arrhythmia episodes? Was it long QT syndrome? And what did all of this mean for our children’s health?

At home, I lay in bed, obsessing over these questions. My kids’ lives might depend on the answers. And then something tugged loose in my memory.

Josh’s paternal grandmother.

It came back to me now: He had never met her. She had died when his father, Larry, was a young child.

I had filed her away as the family’s “Nabokov death.” In Lolita, Humbert Humbert tells us, in one of the most famous phrases in English letters, “My very photogenic mother died in a freak accident (picnic, lightning) when I was three.” Josh once told me that a similar fate had befallen his grandmother: golf course, lightning.

I sat up in bed. A lightning strike? Sure, those things happened. But come on, who actually died like that? I had a hunch now: that his grandmother’s death might be that clue in the family tree, hiding all this time in plain sight, if we only looked through the lens of the past.

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Josh and Audrie in Texas

Josh was born in West Texas in 1983. His mother was twenty-one then, a refugee who had fled Argentina’s military dictatorship for Venezuela with her family in the late 1970s. She has always been strikingly pretty, and in the photos from Josh’s childhood, she has thick dark hair that falls halfway down her back, light green eyes, and a radiant smile. While living in exile in Venezuela, she met an American man in the oil industry. Larry was ten years older than her, blond and charming, and she soon married him, moved to West Texas, and had three kids in quick succession.

The marriage didn’t last. Josh’s mother moved them back to Argentina while Josh was still young. His father had been absent most of his childhood, and though they had reconnected in adulthood, Larry had now been deceased for several years, his own cause of death listed as “sudden cardiac event.” With the exception of a cousin, Audrie, Josh had lost touch with his paternal family. So it wouldn’t be surprising if he had the wrong information about a death that happened so long ago. He couldn’t even remember what grandmother’s name had been.

I’ve only visited that part of Texas with Josh once, for Audrie’s wedding (the bride wore her cowboy boots). I remember a flat, arid landscape, with oil pumpjacks bobbing up and down in the distance like strange dinosaurs. A petrochemical odor hung heavily in the air. At Audrie’s wedding, multiple people, on learning that we were out-of-towners, warned us not to drink the tap water. I was delighted to see a genuine tumbleweed blow across the road.

It was the kind of place where you could see someone getting struck by lightning. But was that what really happened to Larry’s mom?

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“What? Lightning? No.”

Both Audrie and Josh’s mom were quick to set me straight. Larry’s mother, whose name was Betty, had indeed died on a golf course in Midland, Texas, in 1957. But as I suspected, the rest of Josh’s story was wrong.

When she played the course that long ago day, Betty was thirty years old and pregnant with her third child—a girl. It was a cloudy spring day with a comfortable temperature in the mid-sixties, which she must have been grateful for as an expectant mother.

Audrie, who is the granddaughter of Betty’s sister, told me that the sisters were best friends, and Audrie remembers her from photos “looking like a movie star from the 1940s.” Her grandmother told her stories about Betty as a vibrant woman who was proud of her two young sons and adored her husband. The sisters loved spending days at the lake together with their families.

Perhaps Betty was looking forward to summers at the lake again on that cloudy day at the golf course. She must have been excited to meet her new baby in the months ahead, to see her daughter splash in the lake with her older brothers.

But something went terribly wrong on the golf course that day. The family would later say, “It was as though she had been struck by lightning,” a story Josh must have heard as a young boy and misremembered. Betty collapsed suddenly. Her heart had stopped.

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Betty Hiller (1926–1957)

“Has anyone in your family ever died suddenly, at a young age?”

We had been answering the question wrong.

Could Betty’s death be the clue we needed? I headed to the hospital to eagerly report my findings to Josh and his cardiology team. An attending I had never met, from the electrophysiology team, was there.

“Wait, so this is not the side of the family that has hypertrophic cardiomyopathy?” he asked.

“Right,” I said. Josh’s HCM came from his maternal side. Betty was his paternal grandmother, so her death couldn’t be explained by the HCM gene Josh carried.

The doctor frowned.

“But then he would have to have inherited two separate genetic diseases. That’s very unlikely.”

With that, the conversation was over. I was stunned. How could a doctor—one who specialized in cardiac arrhythmias, no less—be so dismissive? And what did Josh’s HCM have to do with it? Betty had died of sudden cardiac arrest. That was true regardless of the HCM passing through the family line of some people she had never met, and that HCM had no bearing on what genes Betty passed down to her son, and what genes he would give her grandson. It wasn’t like when sperm met egg, they had a negotiation about which gamete was allowed to pass on a genetic disease.

If you spend enough time in Sickland, you will run into something that the board of tourism never advertises—doctors who think you are dumber than they are, and make no pains to hide it. They speak to you with condescension. You are a person who could never understand their esoteric knowledge, and shouldn’t bother to try. I wasn’t a physician or a scientist, and it was true that one of us was being stupid right now. But I was pretty sure it wasn’t me.

Undeterred, I shared the update about Betty with our kids’ cardiologist, Dr. C—he, too, was an electrophysiologist and had never treated me like I was beneath him. As I told him about Betty’s death, his eyes grew large.

“This is exactly the kind of story we hear in families with long QT,” he said. He grabbed a pen and paper, and began to sketch out a family tree. I helped him fill in the details as he drew each person—squares for men, circles for women. He drew a square for Josh and a square for his father, Larry, with a slash across it: Deceased. He drew a circle for Betty, and the pen cut across this shape, too. Like a woman falling to the ground. Like lightning: Slash.

When I looked at a photo of Betty, I could see pieces of my children in her face—Iris and Gabe’s eyes, the shape of Gus’s nose. DNA from a woman I would never know. Had she also passed down something else to them, a faulty ion channel in her cardiac cells that made their electricity go haywire?

But there were no other early deaths in Betty’s family tree. She’d had rheumatic fever as a child, which had left damage to her heart valves that was noted on her autopsy. That, combined with the increased cardiac strain that pregnancy causes, might have been enough to doom her.

I showed Dr. C her death certificate, with the autopsy findings scrawled in barely legible, midcentury cursive. I had downloaded it from a genealogy website, using a free trial that I actually remembered to cancel. There was something strange in the reach of technology—some person we didn’t know had uploaded this document from 1950s Texas, and here I was, one thousand miles away, looking at it in hopes that it might provide life-saving answers for my children.

“I don’t think this kind of valve damage would have caused sudden death like that,” Dr. C said. He still believed long QT was a plausible explanation. But we would never know for sure what disruption of valves or ions had occurred that day to make her heart stop beating.

In Jesus’ Son, Denis Johnson writes, after a character’s brush with death, “There was no touching the hem of mystery.” I had a husband in the hospital with heart failure, facing major surgery. I had two children with abnormal EKGs, unhelpful genetic test results, a family tree with little slashes, and the name of a woman I had never met, who died on a golf course long ago, carrying a baby she would never meet. I could only reach out my hand toward that slippery, glowing fabric, mystery’s hem just beyond my grasp.