Family Tours in the Kingdom of the Sick: Thank You for Your Toxic Positivity
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.
Read Part I, Part II, Part III, Part IV, Part V, and Part VI.
My husband had become a cyborg, and would soon become part-pig.
In mid-December, 2022, Josh was discharged from the hospital, part man, part machine: he now had a pacemaker and internal defibrillator, or ICD, implanted into his chest. In six weeks, he was due to return for open heart surgery, where we expected his aortic valve to be replaced with a porcine one.
It’s a relief to know your husband has a backup generator. But as the weeks passed and we waited for his surgery, his health worsened. He had been walking 20,000 steps a day before his hospitalization. Soon, he was struggling to walk two blocks to our son’s school. Then he couldn’t even do that.
I couldn’t deny what was in front of me: Josh was slowly dying.
Everything now depended on his upcoming surgery—he would not live long without it. Yet the prospect of such a surgery, too, seemed unbearable—to send a person I loved to be carved apart with a bone saw, to have his heart stopped and then split open.
Our entire lives were on hold. Into this period of waiting, life brought us another blow.
Iris and Gus had cardiology appointments to follow up on their ambiguous QT intervals, that measurement of time it takes the heart to recharge for the next beat. On past EKGs, their QT measurements had been longer than normal, but not long enough to be considered truly pathological. At this appointment, Gus’s QT was normal, a relief.
But Iris’s results were different. Her QT length had jumped from a previous reading of 465 to over 480 ms.
Dr. C, her cardiologist, explained that 480 was the red line. Iris had true long QT syndrome.
I sank into what I could only describe as a type of grief, though using that word felt like taunting fate. Fifteen months earlier, I’d been the wife of a healthy man and the mother of three healthy children. Now everything had changed. My husband’s heart was failing. My daughter was at risk of sudden cardiac arrest. I had one son with the HCM gene that would most likely cause his heart to thicken as he aged, and another son whose results were still pending.
My life felt like it had fallen apart. But the truth was even harder to bear: that the life I thought I had—healthy husband, healthy kids—had never really been my life at all. Josh had been born with that broken valve. When we met as teenagers, it was there inside him, unknown to us, doing its best to keep him alive. It was there when we got married and decided to have kids of our own. He’d always had the HCM gene, and Gus had inherited it at the moment of conception. Iris had always had long QT. Health had always been an illusion.
The clock had always been running.
Let us revisit our Sontag quote from Illness as Metaphor: “Everyone who is born holds dual citizenship, in the kingdom of the well and the kingdom of the sick. Although we prefer only to use 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.”
A person who has immigrated to Sickland is also obliged to return, at least socially, to the Kingdom of the Well. After this much time navigating the world of illness, even as just a caregiver, I felt a discomfiting culture shock when I spoke to anyone on the outside.
I began to dread even the most basic small talk. “How are you doing?” was a question that now seemed almost insulting: What possible answers could I give that anyone would want to hear?
“My husband is on the couch dying and I’m just hoping he survives until his horrifically invasive surgery, and then hoping he survives that, but otherwise great!”
“My teenage daughter could go into cardiac arrest at any moment without warning. Kids these days!”
To pretend to be anything resembling “OK” felt like a betrayal of myself. I suspected that people didn’t really want to know how I was feeling, but rather how I was managing, so a friend suggested I try this answer: “In the pit of despair, but functioning the expected amount.”
I decided that I wasn’t going to censor myself in conversations anymore: “I am doing terribly. No, my husband will never be well again. Yes, my daughter’s long QT can be treated, but never cured.”
“I am where conversation goes to die,” I warned one friend.
But honesty brought a new problem: most people instantly tried to steer the conversation back to a more positive place where they felt comfortable.
When I mentioned that Josh’s surgery had a 2 percent mortality rate, someone quickly jumped to remind me, “That’s a 98 percent survival rate.” I must look like a person who failed third-grade math. Would you put your husband on a rollercoaster that killed two out of every hundred people who rode it? I wanted to ask. I considered sending this person on the roller coaster instead.
“At least” became my new most hated phrase in the English language. “At least Josh is safe in the hospital. At least there are treatments.” So, too, did I come to hate “I’m sorry,” a phrase I heard so many times that it began to feel robotic. I craved real responses, the way people really spoke, not these rehearsed Hallmark phrases. One friend just texted me “REBECCA NO,” a reaction that felt honest and refreshing.
Many of my friends said they were thankful Iris’s and Josh’s heart diseases had been caught before anything terrible happened. Yes, of course. How could we not be thankful? But I wasn’t ready to be thankful that we had caught it. I was still angry it existed at all.
Some people remarked about how lucky it was that Gus had had long COVID, since we first discovered all of these heart issues through the long COVID study. My son had suffered for months and still struggled with the long-term effects of that trauma. How could I ever say his pain was lucky?
Just look on the bright side, everyone seemed to be insisting.
“What could possibly be the bright side to heart disease?” An old high friend asked me, flabbergasted. She was in the midst of chemotherapy, so she, too, had been using that other passport. She knew what Sickland was like, had fended off all the at leasts and I’m sorrys herself.
I knew most people were turning to their misguided positivity with good intentions. They thought they were comforting me. But instead, I felt the most alone I’d ever felt. I suspected many people were really thinking of themselves. When faced with the bleak reality and cruelly stochastic nature of illness and death, most of us take comfort in magical thinking—that we, of course, will be exempt. It was easier to minimize my grief than to answer it.
I didn’t want to be comforted. I only wanted someone to sit with me for a little while in what Sontag called the nightside of life. I am immensely grateful for the friends who did.
On January 31, after six weeks of Josh’s heart function growing steadily worse, we checked into the hospital. I had gone to Macy’s and bought him a robe and slippers to wear post-op, like I had done after our children were born.
“Oh no, he can’t have anything with him,” the pre-op nurse told me. “You’ll have to take all his belongings home, even his phone.”
I felt foolish, holding the bag I’d packed for him. Josh gave me his wallet and his phone and all of his clothes.
It was late. His surgery would be first thing in the morning. I would have to say goodbye tonight, with no way to contact him once I left. We sat together in the pre-op room silently, aware that it might be our last moments together. Then I took his belongings and walked out of the room, through the quiet halls with the darkness and the city lights out the windows, once more alone in the nightside of life.