Americans Have to Accept Uncertainty
As the chronically ill know, to be alive is to be “in uncertainty.” But American culture—and American medicine within it—largely strives to downplay this fact.
In 2012, I got very sick after several mysterious bouts of bad health. It took nearly three more years to figure out what was wrong with me. Few problems showed up on my test results, so the doctors mostly shook their heads: Without measurable data, they couldn’t even say I had a disease. That is how modern medicine works; it relies on data, measurements, symptoms, all of which constellate into a specific “disease entity,” tightly codified and closely studied. To be ill these days is (typically) to have more certainty about the source of your suffering than humans have ever had before. Your sore throat is caused by streptococcal bacteria; the lump in your breast is benign; the pain in your foot is radiating from a fractured metatarsal. Because I had no answers, I sometimes wondered if the problem was all in my head. Perhaps I was depressed. Slowly, though, I came to accept what my body was making clear: I was sick, very sick, even if no one knew why. Without data, I had to make room for a reality that included my near-total lack of control. I might never get an answer about what was wrong. I might not emerge stronger. I might die. All at once, I had stepped off the path of progress, a deluded narrative to which I—like many a good student—had clung assiduously my whole life.
My life as a patient changed the day I reread a letter by the 19th-century poet John Keats. At the time of its writing, Keats had witnessed his mother die from tuberculosis, then a poorly understood disease with an unclear cause; soon his brother Tom and later he himself would die of the infection. In the letter, Keats—in his early 20s—tried to explain to his brothers the special quality that differentiated a great artist from a good one. “Negative capability,” as he termed it, is the quality “of being in uncertainties, mysteries, doubts, without any irritable reaching after fact and reason.”
Keats’s words about the necessity of “being in uncertainty” reminded me that I wasn’t living off the known map of human experience. In fact, I thought his formulation of negative capability was not just key to making great art, but to living well in the face of pain. It was a profound insight of the sort that comes from witnessing loss and suffering up close.
As the chronically ill know, to be alive is to be “in uncertainty.” I had felt invisible in my illness, I realized, because American culture—and American medicine within it—largely strives to downplay this fact. A doctor I know told me that in med school he was explicitly taught never to say “I don’t know” to a patient; uncertainty was thought to open the door to lawsuits. In the place of uncertainty, Americans have catchphrases: Just do it. What doesn’t kill you makes you stronger. Muscle through it. Paradoxically, the culture often paints the acknowledgment that some ills are chronic and insurmountable as a luxury none of us can afford—almost verbatim. “I’m about to take this nation to war. Grief is a luxury I can’t afford right now,” says the president on the TV series 24, expressing a sentiment viewers are meant to admire.
No wonder, then, that across the country people are now also suffering from a kind of “irritable reaching after fact and reason.” Since the novel coronavirus began spreading in the United States in earnest, we have collectively been living in a shadowland: Whether or not we have been infected with the virus, we’ve all been infected with the uncertainty it brings. The virus has forced the nation into what Keats called the great “Penetralium of mystery,” and it’s an uncomfortable and unsatisfying place to be. Granted, uncertainty is not where we want our scientists or our epidemiologists to dwell; we want them reaching after answers, pushing for vaccines. But the task at hand for those of us who are not scientists is to figure out how to remain patient enough in our uncertainty—until there is a treatment or a vaccine—that we can take care of one another and make wise choices as a society.
Are we making wise choices? Or is our hunger for certainties inhibiting the national discourse about how and when to reopen? Much of the debate seems predicated on certainties that aren’t there, leading to projections that may never and probably will never come to pass. Each of us takes some of the information that is available and spins it into a story that makes sense to us but may have little to do with the course of the pandemic, a course that is still unknowable. We still don’t understand why Iran, but (so far) not Iraq has been decimated by the virus; we still aren’t entirely sure to what extent children can transmit the virus. Yet in the media we see presidents of universities and op-ed columnists concocting elaborate scenarios about moving forward, as if thinking could make it so, as if we are anywhere close to having precise control over where the next cluster emerges.
In our hunger to hold on to something certain, the national discussion has devolved quickly into a black-and-white debate about saving the economy versus saving human lives, with one camp pronouncing performatively that seniors should sacrifice themselves for the benefit of their grandchildren, and the other doubling down on the idea that all lives are valuable. Or, as New York Governor Andrew Cuomo put it, “our brothers and sisters are not expendable, and we’re not going to accept a premise that human life is disposable.” Such hortatory emotions on both ends of the spectrum obscure one certainty: We now have to think about how to leave our homes so more of us can go to work—and that transition will, without question, bring more deaths with it, as Anthony Fauci keeps noting. The real question we are facing is: What ethical demands does uncertainty place on us, and how ought we think about them as we reopen? Which trade-offs are morally acceptable, and which are not?
At home with my partner and two children under the age of 4, moving into the second month of the lockdown, I can feel uncertainty weighing on my body. It weighs on me as I climb the steep attic stairs to do our laundry (more carefully than ever before, lest I trip and break an ankle); as I drive twice a month to the grocery store, feeling strangely exposed; and as my partner and I debate what risks will be acceptable to take going forward. Am I at high risk because of my medical history, my tendency to develop blood clots? None of my doctors knows. I’m struck by how similar this time feels to the period of grief I experienced after I accepted that I had a chronic illness that might not go away—that my life was permanently changed. The hardest part was accepting the uncertainty of whether doctors would ever have a name and a treatment for what was wrong with me. I felt a painful knowledge gap: Someday, doctors would have a name for my illness. But in the meantime I might become one of those unlucky people lost on the way to answers, treatments, cures.
We’re now trapped in a similar space, a waiting room. We know what this virus is, but we don’t know yet how to treat it. We understand a lot about its transmissibility, but we still don’t know exactly how contagious it is, or what circumstances are riskiest. (Choir practices, restaurants, subways?) We were told not to wear masks; now we are told to wear masks. Asymptomatic transmission was not thought to happen in significant numbers; now some think the virus is passed stealthily to the vulnerable by people who show few symptoms. So we have to embrace a kind of open-minded adaptiveness to the changing medical landscape. The one certainty here: Together we have to live in the gap.
As Keats witnessed more and more suffering—his brother Tom’s death; the infectious illnesses sweeping London—he connected his aesthetic vision to lived experience, and wrote in a letter that life is “a vale of soul-making”: “Do you not see how necessary a world of pains and troubles is to school an intelligence and make it a soul?” he asked. Certainly, none of us would choose to suffer through this pandemic. There is nothing good about suffering in and of itself. But given that we are, the most—the best—we can do is acknowledge the reality: We are living without all the answers, and we may be for some time. It’s too soon to tell the story of what will come this fall, let alone next year. Or as Keats put it in another letter to his brothers, “There is nothing stable in the world—uproar’s your only music.”