On Managing Acute Uncertainty in a Time of Medical Crisis

Three years ago, I wrote a book which explored how we cope not just with the unknown, but the uncertain elements of our health. It had nothing to do with pandemics or contagion, though that is certainly driven by the unknown. It also had nothing to do with viruses. Rather, it followed something much smaller, much more individual: the first year of life of my then-infant daughter after she mysteriously had a stroke at six weeks, and it ended when she was a year old and fully recovered, detailing the terrifying time in between. The title The Tincture of Time: A Memoir of (Medical) Uncertainty comes from the commonly-known phrase used by medical professionals the world over when the only answer for a prognosis is time. It’s not the cliché that time will heal all wounds, because it may for some and may not for others, but rather the prescription of time as the only source of answers. It is a phrase I now rely on whenever something unexpected enters. The coronavirus is no exception.

Now that we are living with excruciating uncertainty, when I speak with people about the virus, the largest concern they share is fear. What exactly are they afraid of?, I ask, sharing much of that fear myself. Is it death? Death of a loved one? Lifelong injury as a result of illness? Financial Ruin? No, not quite. It’s uncertainty.

There is something we can do on an individual level, though, and that is to try and manage our uncertainty, so I offer you this approach, taken directly from the three stages of illness. When my daughter was sick, I navigated the ER, weeks in the NICU, a year of doctor visits, neurosurgery appointments, early intervention, fear, and confusion with this loose compartmentalization, and this structured approach felt like a lifeline. Perhaps, now, there’s a way to apply these lessons on a larger scale.

The three stages of illness are: “Acute,” “Sub-acute” and “Chronic.” Acute uncertainty is that initial time when we are thrust into a terrifying and unknown place. For me, it was when we brought my six-week-old daughter into an ER following seizures. That day, we rushed to the entrance to the emergency department, covering her to protect her tiny body, while she was triaged. While in the nurse’s arms, her right arm began to twitch like a torn electrical wire. It was before we knew that we’d be hospitalized for weeks, before we knew what the next few years would hold. It was triage. It was shock. It was a rip in our blissful routine and daily life.

The acute uncertainty with the coronavirus is now leaving its heightened intensity. In mid-March,, I walked into a prison in Lancaster, California to teach an 8-week creative writing class to 25 incarcerated men and had to leave my phone in the car for security reasons. Three hours later, I returned to my car and turned on my phone, where I had 27 text messages and three CNN updates telling me that Tom Hanks and Rita Wilson tested positive for coronavirus, that Trump gave his first Oval Office address and shut down Europe, and that the NBA shut down its season. I spent the next 90 minutes driving in darkness home to Los Angeles, listening to my sister, a doctor in Philadelphia, panic about what was to come. In a matter of three hours, we as a society were rushed to the Emergency Room, unsure, uncertain of what was going on; it’s as though our entire country was in an ambulance, not knowing what happened or why. Each generation has this epiphanic moment: remembering with vivid detail exactly where we were when JFK was assassinated or when the Challenger exploded or when the towers fell during 9/11. This new generation, too, will remember exactly where they were when the reality of the coronavirus hit them.

Our government began to pay attention to the doctors, and one by one, schools and cities and businesses shut down. We came to terms with the severity and uncertainty of this prognosis, and slowly tried to work our way out of the acute period. Once we know this, the acute uncertainty came to an end. We were admitted to the hospital. We had no choice to accept our medicine and treatment and wait.

Now, though it changes daily, we generally know now that some states are continuing to shelter-in-place and quarantine, while others have begun to reopen. Time and varying public health projections can tell us how those decisions may impact the next stages of uncertainty, but we remain in the sub-acute period of uncertainty while we wait.

When I was researching uncertainty in medicine, I interviewed dozens of experts and individuals experiencing various forms of medical uncertainty. Many faced long-term, ongoing uncertainty, which invariably turned their chronic uncertainty into the only known variable, while others shifted my perspective on what uncertainty is, what a medical crisis is, and helped me understand where I fall in the spectrum.

Speaking with many experts and individuals who had gone through something similar—whether less traumatic or more traumatic—helped me place my own experience in a greater context, and also helped me realize that how we approach uncertainty in our health is a litmus test for how we approach life. Uncertainty is living outside of life and within it. It is the baseline of experience, of joy, of energy, of possibility, of fear. And uncertainty—especially in a pandemic—reflects how we as a society and we as individuals are.

Once we passed the acute period of uncertainty, we entered the sub-acute period, that nebulous space between acute and chronic. For health care professionals, this stage is the bulk of their war. For everyone else, this is that “wait and see” time. This is watching the grass grow and homeschooling our children and learning how to manage a crisis while working from home, and appreciating Mo Willems teach toddlers across America how to doodle. This is when we watch the news, or we don’t. This is when we catch up on books and Netflix and phone calls from old friends, or we don’t. This is when we defer to the experts to do their job, despite the outrageous frustration of the in-between. But we do it because, quite simply, we have no other choice. While we live in this state of sub-acute uncertainty we are all doing something. We are controlling our actions, which will help us get to that next stage of subacute uncertainty faster. We follow the rules, we self-isolate, we wear masks, we quarantine, we abstain from playdates and unnecessary travel until our government tells us we can. We respect our fellow human beings and remember that the immunocompromised and elderly are equal people to us; we will all be elderly at some point and most like at one point, we will all be immunosuppressed from one thing or another.

Once we get past this sub-acute time, eventually we will wind up in chronic uncertainty. In other words: life. Though we do not know when, we will eventually return to school and work and playdates and hugs hello and goodbye in some version. It may be recognizable or it may be foreign, but we will return. The hope is that some of the tragic loss of this pandemic will be offset by what we as a society will learn in order to ensure that it doesn’t happen again.

In my interviews with clergy, parents, teachers, workers, children, assistants, artists, I asked each person for the first word that came to mind when they hear the phrase “uncertainty in medicine.” The overwhelming response was “fear” or “blindness” or “powerlessness.” Yet when I asked scientists and health care professionals the same question, their first response was “challenge” or “reality.” The difference was that they understood and expected this uncertainty; it is part of their professional worldview, and it is no different now. Health professionals and experts know that we don’t know much about this novel coronavirus. The difficulty now lies in convincing the rest of us that uncertainty is something we can and must live with.

So while the doctors and scientists are fighting on the front lines, we must learn to manage our own uncertainty somewhere between fear and challenge, somewhere between powerlessness and power. We can still find a bit of power in these uncertain times. There is a reason that structured programs enable people to process trauma and addiction and transition, like the seven stages of grief, when mourning the loss of loved ones, and AA’s 12 Steps to Sobriety. Structure, guidance, direction can help us navigate the uncertain territories ahead. When I began to apply the three stages of illness to my own medical uncertainty with my daughter, I was able to do the same. We did come out of those three stages and she is a thriving, healthy kindergartner, who is now home with her little brother for the foreseeable future, continuing to learn how to read from our living room.

Years ago, a friend told me when he was just coming out of his acute stage of uncertainty for a personal illness that “This is no longer the stuff of life and death. Now it’s just the stuff of life.” At some point in the next six months, or eighteen months, or three years, we, too, will be dealing with the stuff of life, whether with a treatment or vaccine or not. It just may look a little bit different than it did before.

The one reality that we can all grasp is that at some point in time, acute uncertainty ends. It almost always ends. As does the space between. You have an answer, and slowly we are learning a few as each week progresses. Time passes. The things that happen between now and then may be difficult, cruel and unfair and inhumane, but like all other crises—war, pandemics, death—it will end. You will have a new life, a rewritten one. And you begin to adjust to this uncertainty, and in time, it becomes your norm. The alternative is unsustainable.