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Like her mother, who had worked as a nurse in a factory, my mother found her calling in caring for others. Between raising my sisters and me, she taught special education, ran a women’s crisis hotline, volunteered at the state prison to teach reading, worked at the YMCA—and that’s just what I can remember before I left for college. I fondly remember trailing behind her as we walked through the neighborhoods of Marion, Indiana, as she knocked on doors to convince factory workers to vote for George McGovern. I have memories of her kneeling beside old wooden desks encouraging her students at Crispus Attucks High School in Indianapolis. And though vague, I have this image of her at a YMCA picnic, surrounded by children vying for her attention—children with twisted bodies, bottle-thick glasses, leaning on metal crutches with braces on their legs. As a boy of seven, though I didn’t understand the emotions of jealousy and fear I felt toward these disabled children, I did learn that my mother was more than just my mother.
Six years ago, I left Chicago to care for my mother who, after several years of decline from Alzheimer’s, appeared to be nearing the end of her life. Despite the looming danger of COVID-19, I am still here and so is she.
I tell these stories to my mother’s caregivers now, wanting them to see who my mother was, who she still is, despite her diseased brain, her atrophied body, lying in the hospice bed, knees folded to her waist, her hands in a palsy as she reaches for something to touch to make what connection she still can to the sensate world. I tell these stories to remind myself where I came from, and why I am here beside her bed.
Six years ago, I left my apartment in Chicago to help with the care of my mother who, after several years of cognitive decline from Alzheimer’s, appeared to be nearing the end of her life. What I believed would be a summer became six months, then a year, then two, then three. She went on and off hospice care three times, until—when she began to lose weight after catching flu along with half the residents in her care home—my sisters and I decided to bring her home, sure her last days were imminent. Two and a half years later, and despite the looming danger of the COVID-19 global pandemic, I am still here and so is she.
Day and night, I make my circuit, around and around the small brick ranch house where I grew up forty years ago, to my mother’s hospital bed by the fireplace in the family room. I bring the cups of cranberry juice, the tomato soup, the ice cream. I serve the applesauce with the crushed pills that keep her bowels moving, her pain mild, her anxiety low. I change her briefs, roll her from side to side, and let her hold my hand until finger by finger I slowly free myself, turn out the light, and stagger back to bed.
Alzheimer’s has compromised her ability to experience and respond to the living world, as her brain cells have become mired in a coat of gooey plaque. It’s a heartbreaking disease, strapping into wheelchairs those who once hiked long distances, locking the independent into “memory care” units, and turning the faces of loved ones into feared strangers.
Remarkably, however, if engaged with touch, music, or direct communication, my mother will respond. The source of human emotions lies deep in the brain and body. She laughs, she cries, she winces, she smiles when I touch her face and greet her. People often ask if she knows who I am, as if recognition were a simple set of memories. With her, touching her, my mother is as present as she was decades ago.
Though her legs have atrophied, if I pick her up in my arms and move her to a chair so that she can feel the floor with her feet, they will begin to tap in rhythm to music. On walks down the street with me pushing her wheelchair, she exalts in the open air, the sunlight on her skin, the sound of children passing by on bikes. She delights in the society of meals, freely making facial expressions, as children do, to show the joy of sweets and the warmth of homemade food. Days will go by and all we hear from her are soft murmurings. But then out of her shrunken body will come words so clear and purposeful that I feel as if I’m hearing them and understanding their meaning for the first time.
Though I have no children, I have become for her both mother and father, one and the same. She reminds me of our reversed roles, calling out suddenly with emotion: “Daddy? Daddy?” And at once, the image of my grandfather comes to me, a balding, pale Irish American, as tall as I am, with his bartender’s apron around his waist. I pat her on the arm; whether she thinks I am him or me now doesn’t matter. She calls, too, for my deceased father, staring into a corner of the family room with such concern and sincerity in her voice that I look myself to see if she’s somehow summoned his presence with the love she still possesses for him. Why she’s never once uttered my name remains a mystery, but for her, words are used not to define but to express emotion, and that’s enough.
The stories told by those struck with disaster in Baghdad are not unlike those from New Delhi, Ramallah, or New Orleans. It’s always the most vulnerable who suffer the worst from disease, warfare, political indifference, and predatory economics.
When the news broke at the beginning of the year that a novel virus had been detected in the Chinese city of Wuhan, I followed the story with a foreboding apprehension. I watched the scenes of frantic physicians and nurses in protective gear moving among patients lying in hospital hallways, some with sheets over their dead bodies, and along with the shock and horror came familiar feelings of grief and anger.
I found myself thinking about my travels in Africa and Asia twenty years ago as a journalist reporting on HIV/AIDS activism. Like those in international health I’ve met and other journalists I know, I cannot forget my past experiences when I hear of new outbreaks of disease and war—which, like HIV/AIDS, are always disasters exacerbated by human greed and a callous disregard for the future of life on the planet. In my mind, these global disasters accumulate. The stories told by those struck with disaster in Baghdad are not unlike those from New Delhi, Ramallah, or New Orleans. It’s always the most vulnerable who suffer the worst from disease, warfare, political indifference, and predatory economics.
This all has an additional personal spin for me as someone who has been HIV+ for twenty-five years. Like 27 million others around the globe, I am still living through our last great pandemic. Millions of us will ultimately succumb to that pandemic because of weakened immune systems, in particular the millions who still can’t afford life-saving medications. Just as HIV/AIDS has become a manageable disease for many in wealthy nations while remaining a slayer of the poor, we might well expect history to repeat with a similar pattern for COVID-19 in coming years, the haves and have-nots dividing along the line of those who can afford to be vaccinated and those who can’t.
Globally, the entwining of poor health outcomes, poverty, and social marginalization is writ bold. I often recall the young people and young mothers I met in Soweto and Cape Town who wanted to see the antiretroviral medications they knew I had in my pockets, little capsules manufactured in the United States or Germany that they fingered and examined, as I stood there swallowing down my sadness, knowing how inaccessible medicines were for them and how little time they’d have because of that. I remember, too, a Buddhist monk in Thailand who sheltered the HIV+ youths dropped in the middle of the night at the gates of the monastery where he lived until his abbot told him that he couldn’t do so anymore because it was giving the monastery a bad image. And in Chicago, I think of the inmates I met whose prison doctor pleaded with them to try to find ways to keep taking their meds when they got released. I remember the Black gay Episcopal priest on the West Side neighborhood of Austin, who told me that young bisexual, trans, and gay men he ministered to on the streets believed that they were already going to hell and that something would kill them before the age of twenty-five, so why bother protecting themselves from HIV. Like the virus itself, these stories remain buried in my marrow.
With COVID-19 triggering these flashbacks, up came as well old feelings of rage. Even the word quarantine brought up feelings of what living with HIV meant and still can mean for people around the world, for men in prison, for young people in rural areas, for those who live in countries and societies where even the suspicion of an HIV diagnosis can mean imprisonment, banishment, or death.
Each time I heard the demonizing language and militaristic metaphors used to describe the “battle” against the “alien enemy” of COVID-19—which quickly morphed into the blatant racism of street attacks against Asians and Trump’s refrain about the “China virus” and “kung flu”—I felt my teeth clench. I recalled how the same kinds of terms have been used to describe HIV, as if those of us who have it carry an “evil” or “poison” or “death” in our bodies. Even within the gay community, it is common to hear men say that they will only sleep with those who are “clean,” by which they mean those who are HIV-. And now here we were again. Out of the mouths of pundits, journalists, and even medical experts came the same metaphors Susan Sontag had warned us never to use again when referring to diseases such as cancer or HIV/AIDS: war, invasion, pollution, plague.
And though I welcomed the familiar calm and careful words of Anthony Fauci, I couldn’t help feeling the old bitterness toward the slow indifference of Washington bureaucracy. When Fauci spoke of being “cautiously optimistic” about COVID-19 vaccine trials, I thought back to an HIV+ friend of mine, Leroy Whitfield, a Black journalist and editor of POZ magazine. He had been instrumental in covering the epidemic as it spread through the Black community, particularly among young people, those in the rural South, and the prison population. Aware of the infamous Tuskegee syphilis study—and having experienced debilitating side effects from taking highly toxic experimental HIV medications in the early days of the pandemic—he was distrustful of doctors and new HIV therapies. I remember him crisscrossing New York in search of alternative treatments between filing stories, exhausted, often broke, until he died at thirty-six.
Indifference kills people with HIV today as it kills people with COVID-19 and will continue to do so. Epidemics never end, viruses stay in people’s bodies, the most vulnerable pass it among others like them, and out of sight they succumb without notice.
Just as HIV has become a manageable disease for many in wealthy nations while remaining a slayer of the poor, we might well expect history to repeat with a similar pattern for COVID-19 in coming years.
There are none more invisible in our society than the elderly whom we section off to long-term care facilities. And to anyone who’s witnessed how quickly viruses can spread inside these facilities, it was surely no surprise that the first major outbreaks of COVID-19 in the United States was a cluster of cases in a nursing home in Seattle.
So much of what I have learned about how to provide respectful, loving care to my mother, I have learned from the professional care workers who work in facilities such as the one in Seattle—many also do home visits to make additional money. They have kept my mother safe and bathed, fed and loved. Native and foreign born, white but mostly Black, almost entirely women, these care workers have shared with me lessons from lifetimes of caring—for their own families and those they’ve been hired to hold together. No care worker cares for the bed-bound alone, but all the members in a family—those present and absent, those secretly suffering as well. I wait for their visits, knowing they will shoulder the burdens of caring for my mother, and for me.
Knowing that our caregivers all worked in care homes here in Indianapolis, I feared for them, as well as for my mother, my sisters, and myself. So reluctantly I had to suspend their service along with our invaluable hospice team of women—an aid who bathed my mother twice a week, a nurse who paid home visits, and a lovely volunteer who came with lotions, poetry, and sweets to share with my mother.
Though my mother’s health seemed stable, I found myself approaching her bed with apprehension when I woke up to change her in the middle of the night, looking sometimes in a panic to see if she was still breathing. As I am prone to do, I began to imagine the worst, thinking about how she would suffer if she became infected. I read once again the directions on how and when to use the injections of morphine hospice had provided for us, which I kept wrapped in a plastic bag in the bottom drawer of the refrigerator.
In the evenings now I sit with my mother sometimes even as she sleeps, needing her company, staring out into the darkness of our back patio, a glass of whiskey on her hospital table along with a book of poetry to read, but instead I turn on my old stereo with the one functioning speaker and let the voice of Nina Simone comfort us.
With the turmoil and tumult of the world swirling outside, my mother and I meet just the same to perform our rituals. She lives on, sleeping much of the day, waking to eat her meals, spoonful by spoonful, sip by sip. I greet her in the mornings, make the coffee, put the oatmeal on the stove, change her briefs, and switch on the radio. Between spoonfuls, we listen to the dispatches from the far reaches of the world where the virus now threatens island nations, nameless barrios, indigenous peoples in New Mexico and Brazil, as well as workers caught in shipping vessels at sea. As I wait for her to swallow, I hear exhaustion and grief in the voices of nurses and doctors, the voices of sons and spouses, voices in Hindi and Portuguese that need no translation.
But along with the fatigue and fear, I hear, too, the acts of love and caring: the opera singers belting out their arias on rooftops; the violinists walking through the hospital wards; and most of all, the clapping hands, the drumming on pots and pans, and the cheering from the balconies in the evenings at the shift changes of health care workers. As these cheers echo off the canyons of apartment buildings in Barcelona, bounce into space, and return back to Earth to my mother and me in Middle America, my emotions deepen and change.
I’d sat beside my mother for over two years in this room and not until hearing that collective cheer from the people of Spain did I look across the room and vividly recall exactly where my mother had sat the day I drove from Chicago to tell her what I couldn’t over the phone. She stared down at the floor, unable to look at her son’s face, her son who had just said he’d tested positive for HIV. I can still hear the silence, still feel the fear, the fear she felt for me, for herself, for us.
Simple gestures of kindness—the touch of a hand, the gift of food, a sincere tone, the look of recognition in another’s eye—can leave us feeling that the burden upon us has been lightened, that our grief is not ours alone to carry.
Twenty-four years ago. And here we are again. She closes her eyes, signaling she’s full. I pick crumbs of toast from her bib, clean the corners of her mouth, lift the grey strands of hair off her face. And yes, I’m mindful that our roles could have been reversed—me in the hospital bed and her holding up a glass with a straw for me to suck.
I hold onto the lingering vibrations from those cheering Spaniards, letting the chords of emotion evoke other memories—not of the painful scenes that have been haunting me since this outbreak, but of those people whom I often remember to elevate my spirit: the healers I met in Cape Town and Ho Chi Minh City, Chang Mai and Chennai, Dakar and Chicago. Gay and straight and trans, male and female, children and adults, black and brown and white, healthy and sick, professionally trained, traditionally wise, politically empowered, spiritually devoted, and all as courageous as any warrior. I called them spiritual activists, as they responded to the AIDS pandemic not solely out of a moral obligation or scientific calling, but out of an understanding that the act of compassion itself honors life, heals the broken spirit, and inspires others to do the same.
One by one, they led me on a journey from Chicago to Africa to Asia and back home. Beginning with my own doctor, a gay young man born in Germany who’d held out his big arms for hundreds of terrified patients as he comforted us while he poured over scientific journals for the newest possible treatments, offering them to me from the moment they were approved, most notably the combination therapy that no doubt saved my life. Despite others warning me against it, he encouraged me to travel to India and then to Africa to carry on with my journalistic interests, and it was thanks to that encouragement that I attended the historic AIDS conference in South Africa in 2000. There, I stood in Durban’s Convention Center, among thousands of South Africans, men and women from all parts of our world who, like me, lived with this virus, along with scientists, activists, physicians, health care workers, and world leaders as we cheered, shoulder to shoulder, our hearts in our throats when Nelson Mandela uttered this simple but monumental statement: “We all are HIV-positive.”
The verb “to care” has its origins in the Old English root caru, “to feel sorrow or grief, to feel the weight of many burdens.” In Proto-Germanic, an earlier root is kero, “to cry out, to wail, to lament in response to sorrow or grief.” Perhaps, the true origin is in our instinctual understanding that we all suffer and need comforting. Among the Wolof people of Senegal, with whom I lived years ago in the Peace Corps, there is an expression they use in responding to the sorrows of their neighbors: they say, “Jiggil Ndigaale!” (I feel the weight of your sorrow on my back!) Indeed, caring demands bearing the burdens of others, feeling their loss and lamenting together their grief.
Simple gestures of kindness, the touch of a hand, the gift of food, a sincere tone, the look of recognition in another’s eye—even from a nonhuman animal—can leave us feeling that the burden upon us has been lightened, that our grief is not ours alone to carry.
Along with the memory of my mother being surrounded by disabled children for whom she was caring in that park when I was a boy, I have another memory, a more recent one, that completes this portrait of my mother—for now, that is. I assume in the days to come she will have more to teach me and others.
This was before we brought my mother home, when she was mobile and living in an Alzheimer’s facility in Bloomington, Indiana. After saying goodbye to her once on a visit, I got up from a table in the dining room where we had been sitting among the other residents, and as I got to the door, I turned back to look at her, fearful that it might be the last time I’d see her. But my mother had turned her attention away from me and onto a woman sitting alone at another table, a woman who must have been new as I’d not seen her there before. As my mother slowly sat down beside her, she put her hand on the woman’s arm, looked into her eyes, and asked: “Are you OK?”
Michael McColly is author of The After-Death Room: Journey Into Spiritual Activism, a Lambda Award–winning memoir that chronicles his reporting on HIV/AIDS activism in Asia, Africa, and America. He has taught literary nonfiction at Columbia College Chicago and Northwestern University. His essays and reviews have appeared in the New York Times, the Sun, In These Times, and Another Chicago Magazine. Landscapes of Grief, Paths of Desire: Walking the Divided Coast of Chicagoland is forthcoming from Northwestern University Press.
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