Before there was hope

Moments before his death, Tom Fox is surrounded by grieving loved ones. At his side are his mother, Doris, his father, Bob Fox, Sr., his older brother, Bob Jr., and his younger brother, John, Sacred Heart Hospital, Eugene, Oregon, July 11, 1989. Michael Schwarz / The Atlanta Journal-Constitution
Caption
Moments before his death, Tom Fox is surrounded by grieving loved ones. At his side are his mother, Doris, his father, Bob Fox, Sr., his older brother, Bob Jr., and his younger brother, John, Sacred Heart Hospital, Eugene, Oregon, July 11, 1989. Michael Schwarz / The Atlanta Journal-Constitution

Credit: Michael Schwarz

Credit: Michael Schwarz

25 years later, Steve Sternberg recalls his story about Tom Fox and a time when AIDS was a death sentence.

Next week: Xena the Warrior Puppy cheats death to change lives.

When photographer Michael Schwarz asked me whether I would be interested in documenting the life of someone with AIDS, I balked. It was 1987. I had just spent three years caring for my grandfather as his life ticked away. I wasn’t ready for another end-of-life encounter. In the 1980s, AIDS stories didn’t end well.

I admired Michael as a news and documentary photographer. We both worked at The Atlanta Journal-Constitution, where I covered public health and the Centers for Disease Control and Prevention. Michael had chosen me for a reason: I was one of a handful of reporters who had covered AIDS since the beginning of the epidemic. Still, I told him no, I didn’t think I could handle it.

That’s where things stood when a note appeared in my interoffice mailbox.

“My name is Tom Fox, and I am an account executive on the 5th floor,” the note said. “I am a PWA (person with AIDS) diagnosed on Oct. 2, 1987. I am certainly no activist; only a person living with a serious illness, trying to make the most of my life. I represent a growing number of people who unfortunately are not able to share their thoughts and experiences; but if I could help one person open his mind to this problem, I would feel that I have made a difference.”

The note was dated Jan. 25, 1988. AIDS was a new disease, caused by a novel virus discovered just three years earlier. Most people with the AIDS virus, HIV, didn’t know they were infected. Those who did kept it to themselves, with good reason. Anyone who acknowledged infection risked becoming an outcast, a target of contempt or fear. Contempt, because AIDS was portrayed as the gay plague, a scourge of drug addicts, prostitutes and the underclass. (Wrong: Viruses don’t play favorites.) Fear, because people with HIV put others at risk. If you knew anything about AIDS in 1988, and you were sexually active, you knew this: HIV was sexually transmitted, and it was spreading.

Newspapers were filled with scary stories, such as the tale of Ryan White, a teenager with hemophilia who was expelled from school in Kokomo, Ind., after it became known he contracted HIV from a blood transfusion. No one with anything to lose wanted to risk this sort of public scrutiny. AIDS activists, armed with the slogan “Silence = Death,” did their best to fight back, but their numbers were limited.

Into this void stepped Tom Fox, 31. He was witty, engaging and courageous. He worked in the advertising department of the AJC, just one floor down from the newsroom.

And he was willing to tell his story.

2

Getting to know Tom

Twenty-five years have passed since the AJC published our account of Tom’s story, “When AIDS Comes Home,” on Aug. 20, 1989. It appeared as a 16-page extra section of the newspaper, folded in with news, business, features and sports. Readers awakened that Sunday to a stunning photograph, above the fold, of Tom on his deathbed surrounded by his grieving family.

When I first met Tom, for lunch in the newspaper cafeteria, I had no idea where the encounter would lead. I liked him from the start. He had a quiet voice, wry, self-deprecating humor and a restrained playfulness. Soon after, I introduced him to Michael, who liked him too.

Michael recalled being shocked when Tom told him that having a terminal disease was a gift.

“It allowed him to make the most of his remaining days, while other people wasted theirs thinking they would live forever,” Michael said.

Tom’s charm — and candor — melted my reluctance. With Tom’s blessing, we lived his life with him, as best we could, for the next year and a half. We met his parents, his brothers, his friends. We visited his home, in Bloomington, Ind., two hours south of Kokomo. We traveled with Tom and his friends to Key West, Fla., to Eugene, Ore., and to Washington, D.C.

We followed him everywhere. I warned him of this at the start, and made sure he understood that once we got the OK to report the story, we would be committed. I told him we would be with him on his worst days, as well as his best. Tom agreed.

He guided us through Atlanta’s gay culture, jokingly referring to us as his “entourage.” We went to Hotlanta Raft Race festivities, a three-day bacchanal that featured a huge party, a drag fashion show and a rafting expedition made up of a flotilla of gay men bobbing down the Chattahoochee River.

HIV was always an uninvited guest. One memorable costume from the raft-race party: A skeletal man, dressed as Bette Midler in a wig, a grass skirt and coconut bra, sitting in a wheelchair with an IV drip in his arm. I felt a mix of horror, sympathy and admiration for someone so determined to live life to the fullest.

There were the Tuesday night AIDS dinners at Atlanta’s historic Catholic cathedral, the Shrine of the Immaculate Conception, which the attendees dubbed the Shrine of the Immaculate Infection. Each Tuesday, dozens of men with AIDS, some of whom had difficulty obtaining hot meals elsewhere, were served free dinners by church volunteers.

Every now and then, there would also be entertainment, perhaps a guitar player or chamber musicians. One evening, a priest built like a pro-football fullback tricked himself out as Carmen Miranda, the Latin movie queen of the ‘40s, and danced around with a basket of fruit on his head singing “Aye-Aye-Aye like you very much.”

The priest captured her act perfectly. Wing-tips peeped out from under his dress because he couldn’t find size 16 heels.

Michael and I became close to several of Tom’s friends, notably Johnny Hurd, a former trainer of Appaloosa show horses in Alabama. Johnnie, like Tom, came out of the closet in Atlanta. He exchanged his curry comb for barber shears. When the owner of the salon fired Johnnie because of the high cost of his health insurance due to his treatment for AIDS, Johnnie installed a barber chair in his living room and did a brisk business at home.

I was one of his customers. Until he died, he cut my hair and filled me in on any juicy bits of information I might have missed in my reporting.

3

Ethical questions

Michael and I wrestled with ethical issues related to our relationship with Tom, which cropped up almost daily. From the start, our editors debated whether the story would diminish the newspaper’s credibility. There was no way, they said, that Michael and I could chronicle a co-worker’s life and maintain our objectivity. We couldn’t disagree. But we countered that, if honestly done, the story would say to readers: AIDS isn’t just out there, it’s here — it’s everywhere. But keeping our distance was hard, and would become harder.

Our immersion began gradually. The more time we spent with Tom the deeper our involvement became. We occupied a privileged position in Tom’s life; he opened every door to us. We had Tom’s blanket consent for every encounter, medical and otherwise. We were treated almost as family, not just by Tom’s parents and brothers but also by his physicians.

At times, we felt as if we knew too much — and wrestled with what we could reveal, even to Tom. One incident was especially wrenching. We had accompanied Tom to the hospital for an appointment with a doctor who was trying to figure out why he was having trouble breathing. He was going to look into Tom’s lungs with a bronchoscope, a fiber-optic lens threaded through his voice box into his bronchial tubes. The device had extra eyepieces. The doctor asked me whether I’d like to take a look.

I pressed my eyes to the glass and peered into Tom’s breathing tubes. They were marbled with red and pink tissue. Michael took a look, too. I privately asked the doctor what we were seeing. All that red stuff, he said, was Kaposi’s sarcoma, a cancer common in AIDS patients. The doctor sadly shook his head. Tom’s lungs had been invaded by cancer. Sooner or later he would no longer be able to breathe. There was nothing any doctor could do.

4

The grim truth

Newsweek magazine put the disease on its cover three years before Tom’s diagnosis, and the moment his mother Doris saw it, she began worrying about the possibility that her son might get AIDS. A day after reading the article, she called to ask whether Tom and his live-in lover, Paul, were taking precautions. He said they were. He didn’t know then it was too late.

Tom delayed revealing his illness to his parents as long as possible.

“I just knew it,” Doris said when Tom finally called her from the hospital.

She was stricken with grief, but her husband, Bob, reacted without emotion. He didn’t rush to call Tom or comfort his wife. Tom’s younger brother, John, who was in the kitchen beside Doris when she received the call, was struck by the contrast between his mother and his father.

“His son had been given a death sentence and it struck me how unemotional he was,” John told me. “All I could think about is how incredibly hard it would be on Mom because she would have to live through this without his support.”

Tom knew better. “My father is devastated,” he said. “But he’s pretty good at hiding his emotions.”

As HIV took its toll, and Tom and his friends became sicker, our relationship with him began to change. His partner, Paul, severed their relationship soon after Tom was diagnosed. Tom relied on Johnny and other friends to help him out. But they were sick too, and getting sicker.

Increasingly, Michael and I found ourselves pitching in. I called Project Open Hand, a service that provides meals to people home bound by illness or age, and asked them to put Tom on their list. We joined him for visits to the doctor and, with increasing frequency, to the hospital.

We were there when he selected his coffin.

Every day, I’d go into the newsroom and do my daily reporting job. It was like living in two worlds, each blind to the other. My editors couldn’t possibly appreciate the emotional and ethical tightrope Michael and I were walking as we tried to report objectively despite our deepening bond with Tom and his family. Tom, for his part, had no experience with newsrooms. He couldn’t begin to appreciate the pressures we grappled with.

All of this crescendoed to the ultimate dilemma: When to publish the story. Tom was pressing me for a publication date, because he wanted to read it. My editors wanted to publish the story after he died. I proposed publishing it in serial form, so Tom could read it in installments.

I couldn’t convince my editors to change their minds. I understood the reasons for the decision; serial publication would have diminished the impact of the story. Even then, I knew it was the right call. But I also knew that it would fall on me to tell Tom he would never get to read the story of his life.

The conversation damaged our relationship, and tore my heart. It also complicated my reporting. Tom became wary of me — and started to worry about what I would write — until the last weeks of his life.

5

Last days

The end came in Oregon, during a visit to his high school girlfriend and her husband. It was a last hurrah, a swing through gorgeous landscapes of rugged mountains, pounding surf and snow-capped firs. We stayed at the summit of Mount Hood and stopped by Agate Beach and the Devil’s Punchbowl.

Tom, by this time, was wheeling an oxygen bottle beside him. Kaposi’s sarcoma had taken over more of his lungs; thin air at high altitude made his tortured breathing worse. Each tourist destination was punctuated by a respiratory emergency, requiring doctors to drain fluid from his lungs with long needles. I became the custodian of Tom’s medical records and X-rays, carrying them to every emergency room visit.

One day, we stopped at an idyllic place called Strawberry Hill, where harbor seals lounged on outcroppings in the Pacific. It was a glorious day.

“With air like this, you don’t need any oxygen,” Tom said. “Sick as I feel, I’d rather be doing this than lying in some bed.”

The crisis came on the Fourth of July. Tom went into respiratory distress. We drove him to the ER at Sacred Heart Hospital in Eugene. As the ordeal worsened, I called Tom’s parents and urged them to fly out because it was clear Tom wouldn’t last much longer. When he heard his parents were coming, he rallied until they arrived.

“Don’t worry, son,” Doris said. “We’ll pull you through this.”

“I remember marveling at Bob and Doris,” Michael says now. “How strong and outspoken she was and how she set an example that transformed Bob.”

Bob, once a distant presence consumed with his job and wary of showing any emotion, over time had found the strength to embrace Tom. As invested as everyone else in the family, he couldn’t bear to leave his son.

Tom spent the next week in an intensive care ward on oxygen with his parents, his brothers, Bob Jr. and John, and his high school friend, Bonny, beside him. The decision to turn off the ventilator was his. He dictated the timing with a word — “tomorrow” — written on a clipboard. The next day, July 11, 1989, Tom died. He was 33. We were with him.

“More than anything else, I remember the removal of Tom’s life support,” Michael says. “How we gave the family space to grieve alone, and how they insisted we be there with them because we were part of the family. I remember crying and shaking as he died, hoping that I could hold the camera steady to get a sharp photo.”

In my mind, Michael’s photograph of Tom’s family as he lay dying is every bit as gripping as the iconic photo of the Marines hoisting the flag over Iwo Jima. Their grief is raw, powerful and hugely symbolic.

The story did just what Tom hoped it would and more, awakening thousands of readers in Atlanta and elsewhere to the horror of AIDS and its impact on families.

The biggest tragedy of all was that help was just around the corner. In 1996, researchers reported the discovery of a new combination of drugs that could all but eradicate HIV from patients’ blood. As soon as the drugs reached patients, doctors began reporting miraculous recoveries. Thousands of patients who had put their affairs in order came back to life. Since then, the gay world — and the AIDS world — have both changed utterly.

6

New face of AIDS

One of the things that makes the 25th anniversary of the publication of “When AIDS Comes Home” so poignant — and troubling — is the new silence that has descended over AIDS, a silence born of the effective treatment that has turned it into a chronic disease.

The early activists, those who survived, have gotten on with their lives. They haven't lost their commitment. Many continue working behind the scenes. But the public hue and cry has dimmed. People who were once so desperate that they crashed scientific meetings and chained themselves to drug-company fences now pick up their prescriptions quietly and commute to work. No one need know.

Although the public furor over AIDS has abated, the virus is hardly quiescent. Worldwide, about 35 million people are living with HIV. Each year, HIV spreads to 2 million more people, including nearly 200,000 newborns, mostly in Africa.

Though health officials report modest gains in many places, no corner of the world is untouched by AIDS.

Almost half of all new infections in the U.S. occur in the South. In Georgia, about 34,000 people are infected with the virus, nearly 15,000 of whom live in Fulton County.

The faces of AIDS have changed, too. An epidemic that once largely claimed gay white men is now entrenched in the black population. One study states four times as many black men in Atlanta carry an HIV diagnosis than white men. Fourteen times as many black women have been infected with HIV than white women. Less than a third of those with HIV are diagnosed soon enough to obtain early treatment.

“Wildly premature,” is how study leader Patrick Sullivan, project manager for the AIDSvu Interactive Map at Emory University, describes claims that AIDS is over.

HIV is becoming an urban epidemic, he says, with explosive bursts of rapid spread in some communities and heavy impact in cities such as Baton Rouge, La., Memphis and Jackson, Miss.

“The sobering thing is that we’ve had 50,000 new infections a year for 20 years,” says Anthony Fauci, director of the National Institute of Allergy and Infectious Disease, who has guided HIV research since the start of the epidemic.

This despite the fact that researchers have “perfected” AIDS therapy, Fauci says, not just as a treatment — but, even more remarkable, as a mode of prevention.

“When you put somebody on therapy and they take their drugs, the amount of virus in their blood goes so low that it’s exceedingly unlikely that they will infect someone else. That’s a major, major breakthrough.”

Yet every day, patients with advanced AIDS turn up in hospital wards, as if it were still 1984.

7

The fight continues

Since Tom’s death, to the extent they can, Doris and Bob Fox have helped to care for many of these people. They helped start Bloomington’s first AIDS support group in 1987 and co-founded a local chapter of Parents, Families and Friends of Lesbians and Gays in 1992. Doris was president for 10 years. This year,  the Rural Center for HIV/STD Prevention at Indiana University honored Doris and Bob with an award for their special contributions to AIDS prevention and education.

Over the years, the Foxes have provided people with AIDS with rides to the doctor, groceries and rent money. Both talk about patients they came to know as if they were their own children. They agonized over the plight of Joseph, an illiterate prize fighter from New York, who followed a girlfriend to Bloomington and increasingly relied upon Bob and Doris’s support. Doris has especially warm memories of a young man named Jay, who died at 25.

“I had the privilege of spending his last days with him,” Doris told me.

Twenty-five years later, I can still hear her saying to her son: “Slip on out Tom, slip on out. We’re all with you.”

After the story ran, we received hundreds of letters from readers. All were positive; many expressed gratitude. In 1989, few Americans knew anyone who had AIDS and had no concept of the toll it was taking. In Atlanta, at least, our story changed that.

“Well, now I know Tom Fox,” a reader wrote. “And if everyone else who reads your story knows him too, maybe we can all begin to understand and accept; and then to help.”

I’m certain that is what Tom had in mind when he first jotted his note to me. He would have appreciated the public’s response to his story; it still pains me that he never got a chance to read it.

What’s most important — and I’m sure Tom would agree with me — is this: We must not be fooled by the progress we’ve made. It isn’t enough.

HOW WE GOT THE STORY
Beginning in 1988, reporter Steve Sternberg and photographer Michael A. Schwarz spent 18 months  working on a story for the AJC about Tom Fox's battle with AIDS.  A month after Fox died, the 16-page story, "When AIDS Comes Home,"  was published, and it won a number of awards. More importantly, says Sternberg, it "opened a window into an Atlanta where family, friends, clergy and volunteers were caring for scores of ailing young men with the best medicine they had: compassion." Sternberg revisits the story in hopes of drawing attention to the fact people are still needlessly dying of AIDS. It is a sobering story of how far we have come and how far we still have to go.

Suzanne  Van  Atten
Personal Journeys editor
personaljourneys@ajc.com

About the reporter

Steve Sternberg, deputy health rankings editor at U.S. News & World Report, has covered medicine and public health for three decades for leading publications, including USA Today, The Atlanta Journal-Constitution and the Miami Herald. In 2010, he reported on the aftermath of the Haitian earthquake embedded aboard the Navy hospital ship Comfort. Sternberg's awards include the Dag Hammarskjold Award for Human Rights Journalism, the American Heart Association's Howard L. Lewis Achievement Award, The National Headliner, the Penney-Missouri award and the Global Health Council Media Award.

About the photographer

Michael A. Schwarz is an independent editorial and corporate photographer/videographer based in Atlanta. Clients include USA Today, Fortune, Forbes, Business Week, The New York Times, Newsweek, Time, National Geographic Traveler, The Chronicle of Higher Education and Sports Illustrated. A three-time Pulitzer Prize nominee, he has received numerous awards including the Dag Hammarskjold Award for Human Rights Advocacy Journalism.