Ashamed to Die: Silence, Denial, and the AIDS Epidemic in the South

thanks.

PROLOGUE

One fall day in 2000, I walked into a church hall in Rock Hill, South Carolina, and took my seat among a group of white mothers and daughters. The guest speaker was Reverend Patricia Ann Starr, who had gained local notoriety for her work with people living with acquired immune deficiency syndrome (AIDS). Reverend Starr was dark-skinned, heavyset, and carried herself like a woman who had spent a lifetime thinking she wasn’t much to look at. She had Jheri curls and wore no makeup or jewelry—the unadorned appearance of a traditional woman of faith. At the time, she hadn’t yet turned forty, but a casual observer could have easily mistaken her for a fifty-year-old woman. The burdens of life seemed to rest squarely on her shoulders. Starr had recently been appointed pastor of True Word of God Fire Baptized Holiness Church, a small evangelical congregation in York, South Carolina. Each week, she wrestled with how to teach her black, rural congregants to practice their faith in an increasingly complex and secular world. Reverend Starr was largely self-taught. She quit Clover High School during her freshman year to care for her ailing mother, Annie Mae Pegram. She became a mother at fifteen and a wife at sixteen. Although Starr promised her mother she would return to school to earn her GED, she never did. A childhood of poverty, sickness, shame, disappointment, and death provided all the education Starr would ever need. Surprisingly, she escaped the bitterness and cynicism that so often comes from a hard life. That qualified her for a mission of redemption and grace. But in the 1990s, fate mandated a new, more urgent message beyond the call to rescue souls from hell and damnation.

That Saturday morning, Starr told those mothers and daughters about AIDS, a silent epidemic killing men and women in her predominantly black neighborhood in Clover, a small textile town forty minutes south of Charlotte, North Carolina.

Starr spoke about people who used sex for currency and escape, the cheapest means toward a sad end. All of the sex and drugs couldn’t mask the pain that came from the poverty, childhood abuse, domestic violence, unemployment, and hopelessness that too often dominated the streets and neighborhoods of small southern towns. She sought to warn the young women seated before her that their social status wouldn’t inoculate them from the dangers of unprotected sex.

Less than ten years earlier, Starr had only heard of AIDS as a disease afflicting homosexual men in major cities. As a person of deep religious faith, she initially found it hard to sympathize with those who suffered after violating God’s laws. Then her sister Carolyn, the wild child of the family, was diagnosed with the human immunodeficiency virus, HIV. As Carolyn careened from one health emergency to the next, Starr learned that others in her neighborhood were also infected with HIV/AIDS, an illness that neutralizes the body’s immune system and renders its host vulnerable to deadly, opportunistic infections. For Carolyn and others living with AIDS, a common cold became a potentially life-threatening illness. Starr’s attempts to help her sister opened doors to her starting a food pantry, which in turn led her to providing comfort and daily support to her neighbors dying of AIDS.

On that Saturday in Rock Hill, South Carolina, Reverend Starr delivered a simple but hyperbolic message to the small group. It doesn’t matter who you’re with. If you take chances and have unprotected sex, it—AIDS—is going to get you.

Reverend Starr spoke for about an hour. Hush ruled the huge room as the women and girls sat in silent disbelief. Nothing in their experience could have prepared them for the unlikely story they were hearing. Seated at the back of the room, pen and notepad in hand, I listened spellbound.

After Starr ended her speech, I introduced myself, took her phone number, and returned to the newsroom to research old clips and the electronic library. Her name hadn’t graced the pages of the Rock Hill Herald—not for birth announcements, obituaries, or police blotter items. I was determined to change that. It would be months before my story finally appeared, just in time for World AIDS Day 2000. Titled AIDS in a Small Town, the story was accompanied by a photograph of Starr standing in front of her home with her niece Tracy as she spoke to a group of young men from the neighborhood. What the caption didn’t say (and I didn’t know at that time) was that Tracy, like her aunt Carolyn, was HIV positive. The story told of how AIDS stalked the streets, especially in the predominantly black sections of Clover, and of the silence and denial that made a lethal illness even more deadly.

After that initial foray, I became an advocate for public awareness. When a family hurt by AIDS needed furniture, I donated my old couch and love seat. My wife and I wrapped presents for AIDS orphans at Christmas. I used each event, each national day of observance, as an excuse to write about AIDS. I received an award for my efforts from the South Carolina HIV/AIDS Council in Charleston in 2002.

In June 2003, I left South Carolina for Florida to work as an editor for the St. Petersburg Times. Journalists are nomads with short memories. We rarely look back. Each new job usually means new stories, new sources. But the story of AIDS in Clover refused to let me go. After two years of procrastination, I called Reverend Starr. Can I tell your story? I asked.

The initial encounter between reporter and speaker evolved into an education about HIV/AIDS in one of America’s most vulnerable places. After countless telephone conversations, funerals, hospital and home visits, tears, and laughter, I came to understand and respect the fervor of those for whom fighting AIDS has become a crusade. Caring for people with AIDS is the kind of thankless work few are willing or equipped to do. Those dying of AIDS long for comfort, someone to hold their hands. No one wants to die alone.

This work is an attempt to break the silence, to provide a living memorial to the men and women in the shadows, those claimed by AIDS, those unfortunate enough to live in Clover, South Carolina, instead of more headline-grabbing places like Soweto, South Africa. This is an attempt to tell their story. In some instances names have been changed to protect the privacy of the living; in other cases I use the real names of those who died. They didn’t die of shame. No, the shame belongs to the living—the foolhardy, obstinate survivors who refuse to acknowledge the real cause of their friends’ and relatives’ demises. AIDS or ignorance, silence or sex, the effect is the same. This is an attempt to invoke their memory and change the course of an ugly history.

1

THE FINAL CALL

The caller’s voice sounded familiar, her urgency unmistakable.

Can you come? Reverend Patricia Starr asked, her words more summons than request. It was in the middle of the morning, but I immediately rose and walked out of my tiny office in the Rock Hill Herald newsroom. Five minutes later, I pulled my white Ford Taurus station wagon into the Piedmont Medical Center parking lot, walked through the automatic doors into the emergency room, and strode down the crowded hallway to the bank of elevators. As I rode up to the second floor, the gravity of the summons created a knot in my stomach and dryness in my mouth.

Reverend Starr met me at the door to the private room where her baby sister, Carolyn (pronounced KERL-in), lay gravely ill. As she had done for scores of others, Reverend Starr came daily to sit with her sister and comfort her. Her skills were sorely tested that day.

A week earlier, as dawn broke, Carolyn’s young son had come running to Reverend Starr’s house. His mother had passed out on the floor of her apartment and he couldn’t wake her, he sobbed. Reverend Starr rose, pulled on a housecoat, and ran along the dirt path to Carolyn’s apartment, where she found her sister frothing at the mouth and unresponsive, her eyes rolled back in her head.

After an ambulance rushed the unconscious Carolyn to the ER, she clung to life as doctors tried to stem the damage of what looked like a drug overdose. Their rescue efforts were frustrated because Carolyn was in no shape to say what illegal narcotic she’d injected. Tricia Ann, as friends called Reverend Starr, was furious. This wasn’t Carolyn’s first drug overdose. Her sister had spent much of the previous two decades on an endless narcotic binge. But now the stakes were much higher.

Carolyn had full-blown AIDS. She was tired. Did she have the strength to fight one more battle?

As a columnist for the local McClatchy newspaper, I had written about Carolyn’s AIDS infection and her sister’s mission to prevent others from suffering a similar fate. Tricia Ann invited me to Carolyn’s bedside to say good-bye while there was still time. The hospital room was painted Carolina blue, just like the fabric covering the recliner where Tricia Ann sat next to her sister reading and answering questions. As Carolyn drifted between sleep and fitful awakening, Tricia Ann often struggled to determine which was which. Sometimes she’d begin reading aloud from her King James Bible, but Carolyn responded only with gibberish.

Familiar faces haunted the patient’s bedside. Carolyn kept seeing her older brother Woody, who had died of complications from diabetes while she was in prison, and her mother, Annie Mae Pegram, whose death in 1979 triggered Carolyn’s downward spiral into the world of illicit drugs and sex. In moments of enchanted lucidity, Carolyn chatted excitedly about a golden room. She repeatedly pointed to a man dressed in a purple robe who stood in the corner of her room. Her sister’s hallucinations prompted Tricia Ann to begin rereading her old copy of A Divine Revelation of Heaven, Mary Baxter’s bestselling book, which purportedly details scenes of a glorious afterlife. Ever curious, Tricia Ann wanted to see if Carolyn’s ramblings matched Baxter’s spectacular visions.

For almost a decade, Tricia Ann had kept watch as Carolyn’s health ebbed and flowed, but her sister’s afterlife visions had finally convinced Tricia Ann that Carolyn’s long, dark journey might soon end. After all, as pastor of True Word of God Fire Baptized Holiness Church, Tricia Ann had ministered to countless people in their final days. Her life, it seemed, had always been consumed by concerns of first and last things. It was as if God had ordained her to watch her loved ones breathe their last, long before their time: her mother at age fifty, her brother at age thirty-five. It looked like fate had one final cruel twist: her baby sister at age thirty-five.

On that spring day, Carolyn lay in bed dressed in a plain nightgown. Despite the acne, it was obvious why the men in her hometown found Carolyn’s high cheekbones and chocolate-brown face so tragically irresistible. The quietness that governed the room was soon interrupted by the firm, assured footsteps of Dr. Craig Charles. This wasn’t the time for his usual early morning rounds. The doctor wore a somber expression, the look of a physician caring for a patient confronting grave odds. He was dressed in a knee-length white coat, white shirt and a tie, and khaki pants.

Dr. Charles had studied infectious diseases at Wake Forest University Baptist Medical Center in North Carolina before starting his medical practice in 1996. Five years later he moved to South Carolina, where he met Carolyn at the downtown Christopher Clinic, a center created by the Catawba Care Coalition to serve poor HIV and AIDS patients.

After dozens of visits, doctor and patient knew the routine and the language of AIDS—T cell counts and antiviral loads—that told the tale of AIDS destroying Carolyn’s body. But that spring morning, as Dr. Charles sat at the foot of Carolyn’s bed, his words were very deliberate. Tricia Ann sat at the other end of the bed, her sister’s head cradled in her lap. Tricia Ann could see Carolyn’s full round face, her eyes listless, bloodshot, a permanent optical tattoo from her years of abusing crack cocaine and heroin.

This is the hardest thing for a doctor to do, he said. Nothing is working. Her disease has progressed too far. As Dr. Charles spoke, Tricia Ann held her breath, afraid of what the physician was about to say. After all, it seemed as if her life, the life of her family, had been wrapped around a succession of grim-faced doctors’ visits stretching back two generations. And for the previous six years, Tricia Ann had sat beside Carolyn listening to one doctor after the next give similarly dire predictions. Somehow time had proved them wrong. Carolyn was a fighter; she had beaten the odds before. Could she do it again?

But Dr. Charles’ sober words swept away Tricia Ann’s waning optimism like a sand castle before the frothy ocean surf. I’m so sorry. I’m so sorry, Dr. Charles repeated. As a doctor, I try not to get too emotionally involved with patients. But you guys have been there. It’s hard.

His words hung in the air for what seemed like forever until Carolyn spoke up, her voice dry and hoarse, not much louder than a whisper. What are you saying? I am going to die? she asked, looking at her older sister, her eyes pleading as if for more time.

Tricia Ann said nothing. Both women stared at the white physician, who let Carolyn’s words sit like untouched dinner. As if responding to her own question, Carolyn erupted in a torrent of tears and screams.

I’m going to die. I’m going to die, she cried. Tricia Ann squeezed her sister’s hands. A wave of helplessness engulfed her. This woman, who preached fire and brimstone for two hours on Sundays without notes or respite, could only grasp for words. For this moment, the power of speech failed her. Then the experienced pastor, who usually found the strength to buttress the suffering and dying in their most vulnerable moments, regained her voice, if not her composure.

How much time do we have? she asked tersely.

The physician took his time answering, as if bracing himself before he spilled more bad news. Only God knows what time, Dr. Charles responded. Given her condition, it won’t be long.

The infection had spread throughout Carolyn’s body. Her immune system was compromised and the antibiotics no longer worked. Her fever had spiked and her blood pressure had plummeted, he said.

Then Carolyn seemed to summon her last remaining dregs of resolve. Tricia Ann, I want to go home, she said. Tricia Ann looked at the physician. Is that possible? she asked.

I would let her go home under hospice supervision, Dr. Charles replied.

Can you make that happen, right away? she said, her response part request, part demand.

He then walked around Carolyn’s hospital bed. He hugged her and then embraced Tricia Ann. For a moment, the enormity of the news seemed to cement the bond between physician and patient, healer and the sick. Dr. Charles looked Tricia Ann straight in the eye and held her gaze.

The good part is that she has you, he said. You know how to pray.

I’m doing that, Tricia Ann said. At that moment, she felt overwhelmed by the physician’s show of compassion, his sensitivity, his zest for his work. This doctor loves what he does, she thought to herself.

In her lifetime Tricia Ann had been in too many hospitals and known too many doctors to count. But rarely had she encountered a physician like Dr. Charles, who fought for his patients and invested so much in the outcome of their treatment. He didn’t act as if he possessed the power of life and death, but he clearly was prepared to do everything he could to save a patient. And when he couldn’t, he was the first to admit the limits of his skills and the constraints of modern medicine.

As Dr. Charles walked out of the hospital room, Tricia Ann felt the urge to follow him. She wanted to ask him questions he might have been reluctant to answer. She had mulled over every nuance of Dr. Charles’s prognosis, but she felt he was holding something back, as if the news was too devastating for Carolyn’s shredded psyche. Tricia Ann desperately needed to hear it, but sibling loyalty anchored her in place. At that moment, she belonged at Carolyn’s bedside.

That was the way it was. Carolyn could always count on her big sister, even during the days when she ran the streets and sold Tricia Ann’s clothes and food for money to buy drugs.

Before he left the room, Dr. Charles had promised to assign a nurse to bring a sedative to quiet Carolyn, who was crying hysterically. Seconds after the nurse injected her, Carolyn dozed off. As she slipped into a restful sleep, her breathing shallow but even, Tricia Ann tiptoed out of the room in search of Dr. Charles. When she found him, he accompanied her into one of those small hospital conference rooms where physicians and families are brought together by bad news.

What are we looking at? she asked.

Her organs are shutting down; her kidney and liver are shot, he said. Whatever they laced it with, it messed up her system. We’ve tried some of the strongest stuff we have, but it isn’t working.

Whoever did this really killed my baby sister, Tricia Ann thought out loud.

Dr. Charles didn’t venture that far. The disease didn’t help, he said.

They poisoned her, Tricia Ann insisted, anger and frustration welling up in her voice. Dr. Charles didn’t agree or disagree. He had clearly moved on. The time for recrimination had long passed.

If she has family, she needs to call them. Let her make her peace, he counseled. We don’t have much time. The physician’s words held an air of finality. They sounded like words of benediction for a ritual Tricia Ann had experienced before. It seemed so familiar, yet so new. Over the previous five or six years, she had accompanied dozens of family members—mostly mothers and sisters—to the bedsides of young men and women dying of AIDS. She had tried to find the right words of comfort, to reassure the grieving that death, even the death of a loved one from AIDS, was all part of God’s mysterious plan. She believed it, otherwise she would never have said it. But sitting in that same hospital, hearing the end was near, meant something very different when the woman in the bed was her baby sister.

To find solace, Tricia Ann tried to remember the easier conversations she had had in situations like this. There was the time she had accompanied a mother and sister to say good-bye to a thirty-seven-year-old man who was dying of AIDS. That day there wasn’t much she could muster: It’s hard, the thought of burying your child. I could only imagine the hurt of hearing the doctors say they have done all they could, she told the woman weakly.

My child is in God’s hands, the mother replied.

Tricia Ann remembered the look on that mother’s face as she got up and walked up and down the hospital hallway, as if pacing would make her son better. The woman had stopped and gazed out the window for a while, then started pacing again. By contrast, the dying man’s sister, who had been his caregiver, was calm and controlled.

When you know that you’ve done your best, it’s a different feeling, Tricia Ann said. You deal with it differently. Even though it hurts.

Part of her knew she had tried to do everything humanly possible to save her sister. Yet on that spring morning she found herself pacing the same hallways and looking out the same window as if searching for answers, the way that grieving mother had done.

She dug deep and came up empty. She wished she could have switched places with Carolyn and given her a chance to do it over again so her baby sister could get it right. She wanted her to experience the joy of knowing God, peace, and even happiness.

That was never Carolyn’s fate. Starting from when she was a little girl, she only saw pain, anger, sickness, and betrayal. And long before she became a woman, she began to act in ways that guaranteed the cycle would continue.

Carolyn was too young to remember when her mother, Annie Mae Pegram, was healthy and strong enough to take the children to the grocery store on Saturday afternoons; she was not old enough to remember her father, Samuel Pegram, when he worked three jobs and found time to fuss over his children. The father she knew wasn’t a father she could love.

By the time Carolyn was old enough to understand, Samuel Pegram was staying out all night and weekends, and Annie Mae Pegram was crippled by cancer, gout, and arthritis. Tricia Ann and her older siblings could treasure all their pleasant memories from happy times. Carolyn only saw misery. I had my dad before he started going wild, Tricia Ann says. She never remembered any of those things.

And so the little girl who grew up in misery lived every minute of her life pursuing happiness in all the wrong places. Nothing Tricia Ann said or did could stop Carolyn. A drug addiction can overpower a sister’s love. Still, as Carolyn lay dying, Tricia Ann felt overwhelmed by a sense of failure, the feeling that she hadn’t done enough to save her sister. She had failed Carolyn. She had failed her mother. Momma wanted me to take care of her, and I let her down, Tricia Ann says.

The sense of powerlessness was palpable in Carolyn’s hospital room. As she slept, I squeezed her hands and rose to leave, with Tricia Ann right on my heels. Without success, she tried to figure out the puzzled look on my face.

As I stepped inside the elevator, I saw a woman carrying what looked like a brand-new baby wrapped in pink, the color of the blanket and clothing suggesting she was taking home a daughter. I was immediately struck by the irony of what I had just witnessed, an unmistakable parallel of peril and promise: upstairs someone’s baby girl hovered near death, downstairs a smiling mother headed homeward with a newborn baby girl all dressed in pink. Could that joyful mother even imagine what it would be like to watch her daughter suffer and die of AIDS?

Unfortunately, too many southern mothers had confronted that question. Since the first cases of AIDS appeared in 1981, the epidemic had spread way beyond the gay and intravenous drug–using population. Women like Carolyn had become the poster children for HIV/AIDS.

Even as Carolyn lay dying that spring, throughout the states of the Old Confederacy doctors, activists, social workers, public health administrators, and people with HIV/AIDS had begun serious discussions in a belated attempt to slow the spread of the disease in the South. Within a year, representatives from South Carolina, North Carolina, Alabama, Georgia, Florida, Louisiana, Mississippi, and Kentucky issued the Southern States Manifesto to warn about the government inaction, ignorance, illness, and illicit sex that made the South the front line in the domestic war against AIDS.

Eight of the top ten states in which the highest percentage of African Americans who have AIDS live are in the South, according to Centers for Disease Control and Prevention (CDC) statistics. In all of those states, the majority of people who have AIDS are African American. Six of the top ten states in which the highest percentages of women who have AIDS live are in the South, according to the CDC.

The South is home to the highest number of adults and adolescents living with and dying from AIDS in the United States. That trend seemed to have totally ambushed the experts. With AIDS seemingly under control and the threat to heterosexual America apparently abated, the world’s focus shifted belatedly to the emerging pathological cyclone decimating the populations of sub-Saharan Africa—in Angola, Botswana, South Africa, and Kenya, thousands of children were being orphaned daily by the deadly virus.

Even as the world’s gaze was turned elsewhere, AIDS spread in the states of the Old Confederacy like kudzu growing along a country road. Between 2001 and 2005, the number of AIDS deaths decreased throughout the rest of the United States but continued to rise in the South. From 2000 to 2003, new AIDS cases jumped by 36.5 percent in the half-dozen states that make up the Deep South—Alabama, Georgia, Louisiana, Mississippi, and North and South Carolina. Florida, Georgia, Louisiana, South Carolina, and Tennessee suffered rates of AIDS cases higher than the national average in 2005.

In 2005, half of all the funeral services conducted for people who died of AIDS were held in the South, in churches just like Starr’s white clapboard True Word of God Fire Baptized Holiness Church. This death ritual had become all too familiar.

The South was home to 36 percent of the US population but 40 percent of AIDS cases, according to the CDC. The region’s health care systems became increasingly overburdened as HIV/AIDS devastated vulnerable populations, especially poor black men and women. This region is dominated by small towns like Clover, the town with love in the middle, that are rife with pervasive poverty, lack of adequate health services, poor infrastructure, high unemployment and underemployment, and too many people who can’t afford health insurance. When you combine these factors with the severe lack of funding for HIV/AIDS care, it paints a dire picture for the South.

Even as other regions in America devised programs to stem the flow of AIDS, southerners remained bound by denial. A conspiracy of hypocrisy, shame, false morality, cowardice, and political opportunism conspired to keep AIDS, God’s curse on homosexuals, off the public policy list of priorities.

Nowhere was this story more evident than in Starr’s home town, where the Clover Community Cemetery, the town’s black burial ground, is littered with the headstones of dozens of black men and women who died too soon from AIDS. Carolyn would be spared the indignity of joining them. A grave was reserved for her in a family plot several miles away.

The CDC documented the first cases of what would later be called acquired immune deficiency syndrome in 1981. A year later, Dr. Robert Ball, a Charleston epidemiologist, treated a gay man with horrendous oral and genital herpes. He was South Carolina’s first AIDS patient.

State health records show that the first case of HIV in York County, where Clover is located, was diagnosed in 1985. There were five more cases a year later. In 1987, six years after the arrival of AIDS on the national scene, fourteen York County residents were diagnosed with HIV.

No one knows for sure how or when AIDS reached Clover. Perhaps some felon returned from state prison with more than just the tattoos on his arms; maybe it was the woman who had moved up North and came back home when she fell ill but didn’t get tested until long after she had shared her deadly secret with more than a few casual lovers; maybe it was one of the young men who had visited the gay clubs in Charlotte, the metropolis forty minutes to the north. No one knows for sure when it started, but they can remember when they first began to notice how formerly healthy men and women began to wither away in plain sight, their arms and legs growing skinny and frail, their dark skin pockmarked by lesions. And they remember the whispers, the rumors, but most of all the dying: Cliff, Sandy, Nita, Jackie, Carolyn, Tracy, Robbie, Girard, and all the others. It is impossible to say how many Clover residents died of AIDS, as South Carolina was notorious for lax infectious disease tracking in the early years. And some victims, dying of shame, left town or simply crossed the state line and died in neighboring Gaston County or in Charlotte, North Carolina.

By 2002 Carolyn had become the new face of AIDS. She was one of the thousands of young black women in small rural towns across America’s Bible Belt dying of what many religious people believed was God’s plague against gays. But she wasn’t gay. She always loved older men and was driven throughout her short life by an insatiable hunger and a reckless search for the affection and affirmation denied her by a promiscuous, absentee father and a bedridden mother.

Carolyn craved the attention of the fifty-something-year-old men who stood on the street corners and leered at her as she strolled by. The two fit like hand in glove. Their lust for her and her craving for crack cocaine and heroin found mutual satisfaction in the dark alleys and shotgun houses of the Cloverdale neighborhood.

Even as America has dispatched billions to fight this disease overseas, our small rural communities remain vulnerable to the sinister threat of HIV/AIDS. The enemy isn’t just the physical illness. It’s ignorance; it’s the guilt and shame-inducing silence that kills our young. It’s time to end the silence and to provoke an eruption of empathy, compassion, and community action to alter the sad trajectory of AIDS in our small towns.

HIV/AIDS remains a significant public health and social justice crisis in the United States, and the South in particular is heavily burdened, warned the authors of the Southern States Manifesto. Poverty, poor education, and limited community resources conspire against people who live in the rural South. Through initiatives such as Southern REACH, the National AIDS Fund pledged to provide program grants to strategically positioned community-based organizations that have demonstrated the ability to reach priority populations with HIV prevention and care services or to lead policy and advocacy efforts.

HIV/AIDS is more than a disease—it is a symptom of the larger problems of social inequalities and racial/ethnic health disparities, said Kandy Ferree,