New data collected by the CDC and Census Bureau shows that nearly one out of five U.S. adults who got COVID have developed long COVID, with symptoms lasting at least 3 months. As a woman in my 50s, the new data reveals, I lost the demographic lottery and belong to the group most likely to develop long COVID. Sure enough, I recently hit my two-year-long COVID anniversary. 

I got sick on June 20, 2020. Two weeks went by, then three, then four. My symptoms—overpowering fatigue, fever, sore throat, swollen lymph nodes, achiness, numbness in my fingertips, lightheadedness, jumping heart rate, cognitive issues, nausea, and GI tract issues—simply never left. One load of laundry became an all-day task. Emptying my dishwasher took three tries some days because I had to take breaks to lie down.

Confronting one’s mortality is famously daunting, but the smaller uncertainty that grew by the month bled me emotionally and spiritually: will I ever get better? How do I face off with a brand-new disease that has no official diagnostic criteria or prognosis? Six weeks into a “mild” non-hospitalized infection, I saw an infectious disease specialist. Diagnosis: post-COVID syndrome. Treatment: “Call me if anything changes.”

After 20 years as a lawyer, I could no longer tuck away facts, to-do lists, and legal arguments in my brain, not with any hope of finding them again. Thinking felt like swimming through molasses. I forgot everyday words like “light fixture” and had to talk around them. On bad days, I had trouble writing a single page of text after a career of writing and editing hundreds of pages.

Chronic illness pares away the detritus of life—need-tos and should-dos evaporate, leaving a raw heart searching God.

I love my work in international human rights and religion but never thought it defined me—family, friends, and faith were always my core. Yet my sense of self became as slippery as time in a pandemic. How do you reconcile a purpose-driven life with days spent binging seasons of TV mysteries? Being is more than doing, but when doing nothing, when do you cease to be your former self?

Divine silence to my pleas for health pushed me to pray for patience instead. I should have known better. At four months, I had a heart attack scare, a debilitating blood clot at five months, some improvement at six, followed by a relapse at eight that included my hair falling out and five months of vertigo and dizziness. 

I was tangibly buoyed up by prayers and love from Muslim, Jewish, Orthodox, Protestant, Catholic, and non-religiously affiliated friends and colleagues around the world and blessed by dozens of meals and practical help from members of my own local religious community, The Church of Jesus Christ of Latter-day Saints. But my heart hurt as I snapped at my kids. As my condition endured, I tried not to imagine the long-term implications. 

Uncertainty in an era of instant internet answers often seems an embarrassing guest, especially among faith communities. Ambiguity in life’s challenges can defy the certain answers we often hope faith will give. At times the unknowns and not-yets push and pull violently on the soul, stretching us again and again. 

For me, like most Americans, COVID did not shake my belief in God but reminded me I am not the author of my life’s story. Chronic illness pares away the detritus of life—need-tos and should-dos evaporate, leaving a raw heart searching God. Who am I? What can I expect from God? From my future?

Peace came through a phrase from the German theologian Dietrich Bonhoeffer. While in prison, shortly before being executed by the Nazis for participating in an anti-government plot, he penned: “Whoever I am, O Lord, Thou knowest I am thine.” The line stayed on my phone’s lock screen for the better part of a year and remains a part of me.

There were no medically-tested treatments during the first year; long COVID was simply too new. Waiting, trusting, and hoping were all I had. As medical research has improved over the past year, I’ve been blessed with care from a clinic that tracks current research and works with long-haulers. To my own surprise, I have made remarkable progress, though I still struggle with post-COVID POTS and fatigue when I do too much.

For the other 1 in 13 Americans facing long COVID, I wish you likewise helpful medical care, a supportive community, and an ability to live with the hard-edged uncertainties that may come. May you, like Bonhoeffer, feel known even amidst the unknowable.

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