On day 45 of our illness, my husband, Marc, and I woke up and looked at each other. Our symptoms had always been eerily in sync. Now the constriction in our chests was unmistakable. It was back. It was worse.
We had returned home to Rhode Island ill after traveling through India in early March. As the quarantine that began with the customary 14 days stretched into April and our Covid-like symptoms continued into May, June and July, I began to accept that we would remain sequestered inside our apartment for much of the summer.
We seem to have caught what Paul Garner of the Liverpool School of Tropical Medicine describes as the “long tail of the virus.” Whenever I see the term, I imagine an orange cat slinking out the door, its tail trailing behind, twitching maliciously.
Our symptoms, which began with vomiting, sliding into Covid’s classic “shortness of breath” and extreme fatigue, began to improve after 30 days. Then, on a video call with my physician father-in-law, we learned about a new symptom: “Covid toe.” Off screen, I pulled off my sock to reveal two swollen, tender toes.
Only health workers were tested in Rhode Island in mid-March; I didn’t receive a Covid test until late April, when our symptoms intensified. Despite negative results, the respiratory specialist I saw for answers diagnosed Covid-19. “Your test was likely a false negative,” she explained through her plastic face shield, an outcome that becomes more probable if you’re tested even a week beyond the disease’s onset. By the time I was swabbed, nearly 50 days had elapsed since my symptoms first appeared.
The pain — now my constant companion — began then. There’s the ache that grips me around the ribs like a corset. There’s the sharp, fleeting pain that flutters through my lungs, stabbing below the breast, then near my heart.
“It’s a grit-your-teeth kind of pain,” I tell my brother-in-law, a cardiologist.
“Call me when it’s radiating,” he says.
“It feels dangerous,” I tell my doctor, but that doesn’t really tell her anything. “Like falling.”
“Maybe that’s not the pain you’re trying to describe,” my husband suggests. “Maybe that’s your fear.”
I don’t try to describe the pain to my mother. “I’m scared, Mom,” I cry. She’s on her way to plant flowers outside my grandma’s nursing home window.
As the virus works its strange, invisible magic inside me, I watch its outward manifestations: constellations of blood-red spots called petechiae strewn across my stomach, breasts and arms; purple circles under my eyes; eight pounds gone; my first white hairs. Before our travels, I’d considered myself a healthy 37-year-old and regularly went on runs around my neighborhood. Now a flight of stairs leaves me breathless. On the oximeter, my pulse races at the slightest stressors.
Over the phone my doctor’s voice is tired, almost defensive. She’s worried about blood clots, and tries to get me into several labs for tests, but I can’t pass their symptom checks. At this stage, she tells me, the only place that will take someone with Covid symptoms is a hospital. If the pain gets worse, I should go to the nearest emergency room in Providence.
A friend whose Covid-19 battle lasted a more typical 14 days drops off groceries; the last rolls of toilet paper in the aisle. For months we’ve relied on delivery services for supplies.
“You can take your mask off,” she calls from the sidewalk. “I’m not scared anymore.”
From her undyed part, gray hairs reveal themselves in all their lived wisdom and glory. When she offers to go to the hospital with me, tears drop into the mask dangling from my chin.
At the E.R., seven hours of tests: EKG, CT scan, chest X-ray, ultrasound. I lie on the hospital bed, one arm pinioned by an IV, wires threading from my chest to the heart monitor bleating above my head. A patient moans, and the halls echo with the commands of X-ray technicians shouting “Don’t breathe! Breathe,” a remedial paparazzi.
The doctor comes in with no news. Even from the inside, my pain cannot be seen. “What is it?” I plead.
“I know you’re scared,” he replies, staring at me over his mask. “I’m scared too.”
The doctors think it’s “post-viral syndrome,” I explain to family, friends, co-workers, though the pain is anything but post. It’s animate, moving, alive inside me. Instead of the orange cat, I now imagine a pale green dragon stealing out the door, a thick, scaly tail snaking behind, thumping ominously.
But no doctor can tell us if the infection is even active, or if our immune systems are reacting to something already gone. No one can tell us if we’re still contagious, and our quarantine stretches into month four.
I scan the media for cases like my own, finding few. I join online support groups on Facebook and Slack. I sign a Covid-19 Recovery Awareness petition, asking the World Health Organization, the Centers for Disease Control and Prevention and the British National Health Service to revise their official descriptions of the disease to encompass this experience.
My suspicion is that many of us with post-viral syndrome also suffer from a kind of impostor syndrome — the feeling that you are a fraud. Those of us whose Covid tests fell within the 20 percent that a study from Johns Hopkins suggests are false negatives are especially vulnerable.
When the E.R. nurse asked if I’d been short of breath that day, I replied that I’d been short of breath for 65 days. Impostor syndrome is why I waited that long to seek help, through 20 days of chest pain. I knew that just as there are cases less severe than mine, there are thousands who suffer more.
Back at home, face down on the bed, window open. The screen has been stuck up for days, and, desperate for fresh air, I’ve got my whole head out into the light filtering through treetops. The maple tree was just budding when my symptoms began; now its leaves have unfurled, and a late afternoon sun is turning their green to gold. Through the branches I glimpse a rainbow, arching the sky, promising nothing.
Slowly things are beginning to reopen. The cafe down the street sent me an email; soon my hair salon will open, too. My overwhelming feeling is that of being left behind. Wait I want to say. We were all in this together.
For me — for many — Covid-19 is far from over. There are thousands whose experience is not recognized in the public discourse, shut out by symptom checks and definitions of the disease that don’t fit its shifting profile or temporality, some even gaslighted by medical professionals. But as long as there are new infections, and those of us still living under the scourge of its long tail — those who may be contagious for months, this will not end. And until it’s over for all of us, it’s over for none of us.
I lie still and try to hear what my body might be saying deep inside. As if the slightest constriction might translate into something intelligible. I am quiet. I wait. On the TV news, discussion of the virus shifts from horror to hope. The cat slips out the door. Its tail remains.
Jodie Noel Vinson is a Providence-based writer working on a book about insomnia.
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