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.
At the children’s hospital, we followed the stars on the floor. This was how we reached outpatient registration, where we checked in for Gus’s appointments and received his ID bracelet, then continued to the elevators that took us to whichever specialist we were visiting. If the stars changed color, we had gone too far.
There is a soft horror to a children’s hospital. The decor is bright, chaotic. Microbial squiggles in Crayola tones. (Is that yellow one Ebola? Or a happy spirochete?) Vinyl Disney murals shellacked on the walls. Glowing from the elevator ceiling, more stars. You wish they would stick to a theme. The cheer feels aggressive, because this is a place where you never wanted to be, where you hate to be, and hate, at some level, every person you must interact with here.
(To be fair, most of them don’t deserve that hate. Also, to be fair, a few of them do.)
Susan Sontag famously wrote in her 1978 essay, “Illness as Metaphor,” that “Everyone who is born holds dual citizenship in the kingdom of the well and in the kingdom of the sick. Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place.” Indeed, a hospital is a foreign nation, its culture and terrain befuddling outsiders. Its language requires careful study. No one seeks to export its cuisine.
But the parent of a sick child comes to this strange place on someone else’s passport. I was not a citizen here, but the travel companion of my son, a tour guide who failed to read the book. I knew the history—first symptoms on October 22, positive test on October 24, and so on—but not the cosmology.
Gus is a quiet, thoughtful kid. He loves weird animals like axolotls and kakapos. He has always seemed to exist only partly in this world, the rest of the time in his mind’s realm, tinkering with scraps of cardboard and wire, or LEGO bricks, or Minecraft castles.
He was ten when we first came here—to this hospital, to Sontag’s kingdom of the sick. He had the terrible luck to catch COVID in 2021, a mere two weeks before the first vaccine was approved for his age group. A few days into his illness, he was struck by unrelenting chest pain, so we went to the ER, got cleared, returned home. A few days after that, pain and weakness in both of his legs left him unable to walk. Back to the ER.
We waited under a large painting of a smiling moon. Our room was more of a dead-end hall. A bed shoved in among stacked chairs and snoozing IV poles. There, we ate individually wrapped bread slices and drank juice from four-ounce containers. We played Minecraft on Gus’s iPad, a reassuring tradition from the home country.
A doctor wedged herself into our dead end, said it could be Guillain-Barré syndrome. I don’t want to brag, but I’ve wasted much of my life watching bad medical procedurals, so I knew what this meant. Paralysis. A terrifying possibility that had not even occurred to me—and as a parent I am really good at thinking up terrifying possibilities.
For the next few hours, I mainlined vending machine food and tried not to have a panic attack. Then a different tribe of doctors shuffled in. They tapped Gus’s reflexes with their strange little hammers.
“It’s not Guillain-Barré,” the tribe’s bearded leader announced.
What I wanted to say was: What? WHAT?? Are you fucking kidding me? That’s all it took? You just had to tap him with some stupid toy hammers, and that’s all you needed to rule out a devastating diagnosis? Why the fuck didn’t you do that in the first place, before you got me all freaking the fuck out that my kid could be paralyzed? I wasn’t worried about Guillain-Barré! Y’ALL ARE THE ONES WHO BROUGHT IT UP IN THE FIRST PLACE, YOU WHITE-COATED SOCIOPATHS!
What I actually said was: “Okay.”
This, I learned, was the wrong response.
“That’s good news,” the chief of the doctors said. You see, in Sickland, one is supposed to demonstrate gratitude for good news. This is true even when the good news does not actually provide any answers or treatment options.
“We don’t think there’s anything wrong with his legs,” one of the tribal underlings chimed in. “Maybe you just need to make being at the hospital less fun. Take away his iPad.”
I considered whether hitting her with the iPad would count as too much fun. (For me.)
After that, our lives became suspended in time. With physical therapy, Gus started walking again, but simply moving one room to another left him breathless and exhausted. Debilitating headaches and chest pain left him homebound for months, unable to attend school or play. He missed Halloween, then Thanksgiving. For a while, he asked me every day when he would feel better. Then he was sick for so long, he stopped asking.
We cycled through specialist after specialist, visited hospitals and clinics in multiple boroughs and states. At PT, Gus threw balls and pedaled on a stationary bike. At pulmonology, he blew into tubes to measure his lung strength. He squinched his eyes shut and stuck out his tongue at the neurologist, demonstrating the health of his cranial nerves. At cardiology, he had EKGs in a room where his favorite building, the Chrysler, peeked at us through the skyline. I watched an echocardiogram of his heart—this heart I once sustained with the beat of my own. Chambers squeezed, valves blinked. Blood swished around in sonic reds and blues.
In radiology, we stuffed yellow plugs in our ears. A tech put a white cage around Gus’s head, and I watched him disappear into the great pupil of an MRI machine. It filled me with more anxiety than I expected. The machine clicked and keened, and I waited, with nothing to do but think.
Thinking is the worst thing you can do when your kid is sick.
As parents, we dissociate every day from the truth we cannot bear: that our children, too, are mortal. That a gene, or a virus, or the stochastic whims of fate might crash into the future we imagine for them. But in this room, I was faced with the unknowable nature of the body—none more so, it turns out, than the ones we knitted ourselves.
Each doctor told me the same thing: they knew nothing about long COVID in children. They said it with regret. Most of these doctors were kind. I could see that it pained them to have nothing to offer. Still, I left every appointment feeling like the official expert opinion was:
¯\(ツ)/¯
With each normal test result, I fell more into despair. This was the guilty paradox of differential diagnosis, of pain without provenance. Normal tests reassure and yet discourage. I wanted them to find something wrong with my boy, so we knew what needed to heal, and then I felt guilty for wanting that too. For not being happy about the good news.
But since we first came here, I have found that it’s the small and unexpected moments of connection that move me the most. Like when a pulmonologist apologized to me because my son’s lungs appeared healthy: “I know when you have unexplained symptoms, you want a test to show something so you can start treatment.” A bit of cross-cultural empathy in a land where things so often get lost in translation. For the first time since we had arrived in Sickland, I felt seen.
After all, I was supposed to be my son’s tour guide. To hold the lantern as we traversed what Sontag called “the night side of life.” What was I supposed to do now, when we found ourselves stranded at the border: too sick for the healthy, too well for the sick? An infectious disease doctor reassured me that kids with long COVID eventually recover. I told Gus this too: One day, you will feel better again. But even in this night-side kingdom, no one knows what future is written in the stars. All we could do was follow them, watching for one to change color.
Finally, five months after Gus got sick, the stars gave us a clue. A test came back abnormal. It was an unexpected finding, incidental in the native Sickean tongue. It would take us across time and space, from Argentina, to a golf course in 1950s Texas, to a single person who lived one thousand years ago in France. And it would save the lives of Gus’s father and sister.
Our family trip to the Kingdom of the Sick was about to get real, and there would be no exit visas.