Family Tours in the Kingdom of the Sick: Write This on the Tablet of Your Heart
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 explores 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.
Read past installments of this column.
I have assimilated to the Kingdom of the Sick. The culture shock is gone. While having brunch with a friend recently, I explained the whole saga. “Whoa,” she said when I got to hypertrophic cardiomyopathy. “All those syllables just rolled off your tongue.” I had forgotten this: there had once been a time for me, too, when those words sounded foreign.
As is the case with most travels abroad, the locals in Sickland like when you try to speak their language. Doctors treat me with more respect when I sprinkle some of their words into the conversation—analgesic, or eosinophil. This is one of the tricks I use now. I am not just passing through, it tells them. I know this place.
We’re now over a year out from Josh’s heart surgery. Life has settled into a routine: daily medications, routine follow-ups. Josh lives with chronic pain from his surgeries. The pain from his defibrillator insertion has the weirdly cute name “pocket pain,” like Polly Pocket for heart disease patients. He has also developed a rare case of recurrent pericarditis, or inflammation around the heart, as a result of open-heart surgery, and now has to inject himself once a week with an anti-inflammatory medication that costs $20,000 a month. We’re fortunate to have health insurance covering it, but not everyone is.
There are disappointments, frustrations. When Iris’s class took a trip to an amusement park to celebrate the end of eighth grade, she stayed home. She loves roller coasters, but she can’t go on them anymore. I have to check every medication she takes, prescription or over-the-counter, against a list of drugs that are unsafe for people with long QT syndrome. A mistake could be fatal.
There has been good news too. Our youngest child, Gabe, has had all normal cardiac tests. He may have won the genetic lottery. Why him, and not my other kids? There is no rhyme or reason to it, no virtue or morality in who gets sick and who does not. Life is stochastic, which is the mathematical version of what my kids’ preschool teachers always said: “You get what you get, and you don’t pitch a fit.”
Gus has completely recovered from his long COVID. Physical therapy helped, and magnesium and riboflavin for his headaches. But in the end, it was just the tincture of time that cured him. When I say that he has recovered, though, I don’t mean that there is no lingering impact on him and our family. Some I won’t mention here, out of respect for his wishes. I can say an effect it had on me, though: his illness came right at the bridge between his childhood and adolescence, and so in a very real way, the child that he was before he became sick was lost to us forever. It’s a sorrow I will carry with me for a long time.
A few days after my last column published, Josh and I were back in the ER. He was having chest pain and shortness of breath. It’s old hat for us by now. I know what to throw into my bag for a hospital outing: a comfortable hoodie, some Chapstick, my iPad, a charger. Make sure we don’t have Josh’s Swiss Army knife with us, because that’s not allowed. I know the routine at the ER. You never want to be too familiar with your local ER. On the other hand, it’s nice when you don’t have to ask where the restrooms are.
This time, it turned out to be nothing urgent. But I know we’ll be back again.
Not long after the ER trip, I came down with a cold. These are the moments when it all hits me. One slight malfunction of my own body, a harmless virus stopping up my sinuses, and I become an anxious mess, crying because one day I am going to die, and everyone around me is going to die.
“I don’t know how you do it,” one of my mom’s friends said to me this week. “Just one foot in front of the other, I suppose.”
How do any of us do it? Live with illness, or a family member’s illness, or just the knowledge of our own mortality? We keep going because we have to, because of obligation and love and the annoying insistence of our bodies to keep living, until they don’t.
In Vladimir Nabokov’s great, funny novel Pnin, the narrator tells us, “Some people—and I am one of them—hate happy ends. We feel cheated. Harm is the norm. Doom should not jam. The avalanche stopping in its tracks a few feet above the cowering village behaves not only unnaturally but unethically.” I thought about this section many times over the course of my family’s annus horribilis, and found something comforting in them. “Doom should not jam” became a kind of mantra for me. We all have to fool ourselves, at least a little bit, into thinking that bad things won’t happen to us, but of course they will. Why should any of us be exempt? This is just the turning of the ethical universe.
This is how I do it: one foot in front of the other, sobbing ridiculously whenever I have a cold, and turning to art. I have found a pleasant dissociation in drawing and painting and photography, including many of the images in this series.
Books have been my constant companion. I have turned to poetry about illness from Leila Chatti and Katie Farris, and Danez Smith’s lovely “Little Prayer,” with its final lines of acceptance. Despite my secular East Coast liberal elitism, I have found comfort in the ancient words of the Tanakh too: Ecclesiastes’ reminder that every chapter of our life is a season that will pass, Proverbs’ instructions to write the things that truly matter—truth and kindness—on the tablet of our hearts.
This, I have realized, is the true gift of literature: to give us someone else’s words so that we might understand our own lives. When Gus was in the hospital for long COVID, I could comprehend my anger because I had read Lorrie Moore’s short story “People Like That Are the Only People Here,” based on her own son’s illness. It reminds us, too, that our suffering is not unique. Our experiences of illness and love and grief tie a thread between ourselves and all humanity.
I am still making sense of the way everything has unfurled. Gus catching COVID two weeks before he could get vaccinated, then being in the small percentage of children who develop such debilitating long COVID. The long tumble of diagnoses that came next: the hypertrophic cardiomyopathy. The long QT. Josh’s bicuspid aortic valve, and its corresponding aneurysm. But what if Gus hadn’t gotten sick? What if I hadn’t enrolled him and Iris in that long COVID study that gave us the first clue something was amiss with their cardiac health? What if I hadn’t insisted on Josh going to the ER the night he fainted, even though he seemed fine after? The great, terrible luck of it all. I expect that I will be trying to make sense of it for the rest of my life.
Pnin’s doom-loving narrator can feel relieved that health is a temporary state to which none of us are entitled. We will all use that other passport. But if we are fortunate, we will, to paraphrase Raymond Carver’s words that he wrote while dying of cancer, get to feel ourselves beloved on the earth. In the end, there is no real Kingdom of the Sick or Kingdom of the Well. There is only the season of being alive, brief and hard and sublime, its lengthening shadows edged all in gold.