My father’s hand was softer than I expected – tender in a way that told me all the fight had left him, at least for now. We held hands, watching my mother’s memorial service flicker past Zoom. It seemed for all the world like we were screening the opening credits for Brady Bunch. Mom died in June 2020, when terms like “spike protein” and “social distancing” were recent additions to the national vocabulary. I sat with my father in their small apartment as people poured out their love, paying tribute to this tiny, lion-hearted woman on a video chat. They had been married for 54 years. He deserved so much more.
Because of COVID, it wasn’t safe to gather in person, so we honored her life and memory alone, snatching at the love and support offered by our cloud of Internet witnesses. Our pain was magnified by this isolation. Yet we belong to a growing community of families across the country and around the world. Protecting ourselves and our loved ones from coronavirus robbed us of the ritual and connection that normally help people deal with grief. Our lives were forever changed by our losses and the struggle to heal as the pandemic raged around us. We are COVID’s collateral damage. And we are legion.
Mom’s cancer had been held at bay for years until it metastasized and came roaring back in 2017. Then in March 2020, her chemo stopped working. Because of what at the time seemed like high rates of COVID transmission, I opted not to fly in for her oncology appointment. I didn’t want to risk passing an asymptomatic infection on to my elderly parents. Instead, I joined an echoing, crackly conference call and struggled to follow her oncologist’s heavily-accented English. They switched my mother onto a more traditional, more toxic form of chemo. But the medical center was closed to in-person appointments because of the pandemic. Her medical care took place over phone calls and video chats.
My mother misunderstood the dosage for her new chemo regimen and took too much, with disastrous effects. When the ambulance arrived, she told them that she had collapsed in the kitchen while she and I were talking and drinking coffee. In the reality the rest of us inhabited, she hadn’t been able to get out of bed for two days, and I was two states away. As the U.S. experienced the first surge in COVID cases, Mom was hospitalized. Family members were not allowed inside. My father, sister, and nephew “visited” at night, sitting in the hospital parking lot to be nearby. They had expected to be alone, but the lot was full. Each car glowed with eerie blue light from a cell phone, windows fogged, families separated by the virus but desperate to comfort loved ones they could not be with.
When my mother was discharged, we had another conference call. Her oncologist performed a cognitive assessment. Mom guessed the year was 1998, and couldn’t remember why she’d been hospitalized. She claimed that I had picked her up off of the kitchen floor and carried her to the hospital. When the doctor asked who the President was she snapped “Godammit, it’s still Trump.” We knew we hadn’t lost her just yet.
Mom went home and directly into Hospice. I went to work on the telephone, lining up as much care as we could find. The social worker at my parents’ retirement community told me the campus was going on COVID lockdown in 48 hours (Bless you, Shelley!). If I could move in before that, someone would be “on the inside” to support my parents.
I packed a suitcase, breaking down as I folded the black dress I would soon wear to Mom’s funeral. My husband and I drove 20 hours and I moved into a guest apartment on their campus. If I left, I wouldn’t be allowed back in. My husband flew home and left the car for me to make the drive back. After. We didn’t know how long it would be.
My mother lived three months. Until the last week of her life, her time with family and friends was spent separated by the wrought iron fence marking the campus perimeter. Every day, Dad and I dressed Mom with sunglasses and a big hat, settled her into a wheelchair, and headed outside for a “gate party.” The sun was warm, glistening like diamonds, reflected in the hub caps of passing cars. My sister and nephew brought ice cream. Beloved family friends picked up hot dogs. We told stories and had love and community through the fence. And even a bit of joy, remembering better times when we’d been able to be together. Back when the breaking of our hearts wasn’t worsened by the world collapsing around us. When politicians hadn’t yet turned their backs on the ravages of a pandemic. When they hadn’t prioritized posturing for their rabid base over providing leadership to ease the nation’s suffering.
Over the weeks, Mom ate – and said – less. It got harder to hoist her into the wheelchair. When she stopped eating, the facility allowed a few family members and good friends in to say good bye. On what turned out to be Mom’s last night, we ordered food from her favorite restaurant. We watched Singing In the Rain while my nephew gave her a manicure. My mother luxuriated in the attention – glowing with love for her only grandchild. The room smelled like hummus and gyros and disinfectant, and we loudly sang along with Debbie Reynolds and Gene Kelly. When she died the next night, my father, sister, nephew, and I were all with her, holding the hands my nephew had made more graceful with lotion and pink polish.
In October, we would have celebrated my mother’s 80th birthday. If she had lived. Her death is not included among the 900,000+ Americans who have died of COVID so far, although the way she died and the trauma that she and our family endured are intimately linked to the pandemic. My family, our country, and our world have lived through such intense and unacknowledged suffering. Our grief and pain are unresolved, made worse by the knowledge that so much of this could have been avoided, that those entrusted with leading our country abandoned us in our darkest hour.
As we struggle to control COVID, we must understand the full extent of its impact. Many people not captured in official statistics have endured unspeakable pain. I am one of them. We would have lost Mom with or without COVID. But neither she, nor our family, would have gone through that anguish in such isolation. Her siblings, nieces and nephews could have visited from out of state. My sister, nephew, and her dear friends would not have had to watch her deterioration through a gate. She could have had a decent death. Even a good death. And we could have, too.
In the months since we’ve lost my mother, I have learned much about love and compassion and the things I value most. I make time to talk to my father on the phone every day. I tell my friends, often, that I love them. I strive to treat my husband, and myself, with more generosity and grace. But my grief has softened, and the hard edges have begun to form. I have gained clarity about what my family and I went through, and why so many families continue to endure pain like this unnecessarily. Our cries have failed to move the charlatan policy makers and provocateurs. As they sprint towards the next election cycle, they spread misinformation, and push back against mask mandates, vaccine requirements, and other measures that would protect the public’s health. But I assure them all, I have moved from grief and sadness to rage and action. And I am but one among tens of millions. I see you. I know what you have done to us. I will not forget.
Amy Bailey, PhD is Associate Professor of Sociology at the University of Illinois-Chicago and a Public Voices Fellow with the OpEd Project.