*Editor’s Note: In reviewing the PGN archives in preparation for our 40th anniversary, we were struck by this account of what life was like for gay men dying of AIDS in 1983. The writer, Stanley Ward, and photographer, Harry Eberlin, have both since passed, so in lieu of sharing their thoughts on the groundbreaking story, we decided to bring the story itself to our modern readers. We hope you find it as powerfully moving as we did.
April 15, 1983
By Stanley Ward
Unlike the other doors we passed, this one was tightly closed. Signs warned of precautionary procedures to be followed by staff as well as visitors, and a special notice proclaimed “Bio-Hazard.” Before entering, we had to put masks over our faces and rubber gloves on our hands.
“Graduate Hospital treats it as a mildly contagious disease,” explained psychologist Dr. Leon Bacchues. “The mask and gloves are mainly to protect the patient from further infection.”
Inside the room, a 29-year-old man, his head slightly raised on the hospital bed, extended a hand. I held it gently, afraid of disturbing the tubes in his nostrils and arm. Still young, still attractive, he was almost smiling. “I’m Steve,” he said. As photographer Harry Eberlin shook his hand, I noticed the large number of flowers — including an exotic bird of paradise from Hawaii — that adorned the room. A phone was by the bed.
When I looked again at Steve, I suddenly realized that I had seen him before — at some party, in some club, with some friend. But I couldn’t bring into focus the time and place. “It’s impossible,” I argued with myself. “You can’t have met him before. You’ve been lucky. None of your friends have contracted AIDS. It happens only to strangers.”
A Slowly Closing Gate
In October of last year, Steve McPartland went to his dentist with bleeding gums. Both sides of his mouth were drained, but the infection persisted. At the same time, he experienced nausea after eating and an overall feeling of weakness. Diagnosed as a gastrointestinal patient, he was admitted for tests to Graduate Hospital, where he was employed in respiratory therapy.
One doctor recognized the syndrome, and Steve learned that he was suffering from AIDS. Within a week, he had lost 30 pounds.
During the six weeks of his initial stay in the hospital, Steve experienced the first of three narrow escapes from death. A catheter inserted into his chest accidentally punctured a lung.
In late December, he was released from the hospital but returned in January with symptoms of Kaposi’s sarcoma (KS). After receiving expert treatment at a cancer clinic in New York, he developed a cyst on his buttocks. Immediate surgery saved his left leg. Steve was released from the hospital again, but a week later he was back for his second brush with death. Another cyst, this time in his chest, threatened life itself.
In March, with only a mild case of bronchitis, Steve was allowed to visit Florida, with the hope his condition would improve in the warmer climate. His trip was interrupted when he began to feel worse, and he took the next plane back to Philadelphia. He has been a patient at Graduate Hospital since that time, suffering from herpes in the lungs, pneuomocystis carinii pneuomonia (PCP) and a constant chalky white film in his mouth and esophagus. He can’t taste food and still has problems with nausea.
Steve’s third brush with death occurred recently, when his temperature rose to 106 degrees. His entire body went into convulsions from the shock. “I saw a big flashing gate that was slowly swinging shut,” he recalled. “I knew that if I didn’t open my eyes before it closed, I wasn’t ever going to open them again.”
The Boy in the Bubble
How did it happen? When did it really begin? Official answers to these questions are at present impossible, but Steve offered his personal theory.
In 1979, Steve cut himself while dissecting a cadaver for the Cape May pathologist with whom he was then working. A severe case of hepatitis followed, and Steve hasn’t felt totally well since then. He dates the beginning of his fight with AIDS from that incident. Occasional trips to New York baths, mostly during the summers, may have weakened his already-lowered resistance.
Theory or fact, this explanation is important to Steve and his family. At least it helps alleviate the sense of random victimization that so often plagues the AIDS patient and constantly raises the question, “Why me?” But no explanation can alleviate the suffering, psychological as well as physical, that AIDS invariably brings.
Steve has been told that he will never be able to return to his job in respiratory therapy because of the repeated exposure to various infectious agents. Although involved in a relationship last summer, he must now reject the possibility of commitment. “I wouldn’t put any lover through this.” He has to refrain from sexual contact for the protection of himself, as well as others.
“I’m always in a daze,” Steve commented about his present condition. “It’s as if I were not here but somewhere in Bolivia. I lose my memory and repeat myself at times. It becomes very annoying.”
To the degree that he has occasional releases from hospital confinement, Steve is more fortunate than some. But this apparent advantage also takes its emotional toll. “Even when I’m out,” he said. “I keep waiting for the symptoms that will force me to return. Since I’m a health-care professional, I’m very aware of my body, of any signs of weakness. And each time I come back to the hospital, it gets a little worse. Since I know there’s no cure, the whole thing is very scary.”
On his leaves from the hospital, Steve enjoys a limited social life. “I don’t hide what I have. I tell the truth to people. It wouldn’t be fair to them if I didn’t.” Whenever he has to appear in a public place, he is therefore “nervous and on edge,” uncertain of how people will react.
Fortunately, Steve’s family and friends have remained loyal and supportive. “I know it’s getting harder on my parents,” he said, “but they clearly show their love. My brother comes to see me every day.” The many flowers are a testament to the loyalty of friends, who also call and visit on a steady basis. When Steve is at home, they help him with household chores and shopping, as well as lift his spirits with companionship. “My only hope has been my friends and family,” he said. “If it weren’t for them, I would never have made it this far.”
A few people, Steve added, have backed away. “They just can’t accept what’s happened, and they feel utterly helpless. But this rejection bothers me a lot, even if intellectually I understand it.”
In spite of this support, however, Steve knows that ultimately he must fight the battle with AIDS alone. “I’m a strong person. I will never give up. But sometimes the body is just too weak. It has a will of its own.”
In the hospital, Steve sees his family and friends only behind the face masks that are necessary for his protection. Since his immune system is so low, he is susceptible to infectious agents that, to the average person, are totally harmless.
“I feel like the little boy in the bubble,” Steve explained. “I’m safe only when I’m by myself. But nothing is worse than being all alone.”
“It won’t happen to me”
Steve declined a request to speak at the AIDS benefit sponsored by the DCA. “At that time,” he recalled, “I didn’t want to talk about it in public. I felt self-conscious, as if I would be on exhibit. Now I’ve changed my mind. I’m willing to help in any way I can.”
Steve’s perspective is unique. A health-care professional, an AIDS patient, an obviously intelligent and articulate spokesman, he also understands the social and psychological problems faced by gay males.
“Gay people don’t understand what they’re facing,” he began. “They need to be confronted by an AIDS patient who is sitting right there to answer their questions and talk about his personal experience. Medical reports and statistics don’t convey the reality of AIDS.”
Too many gay men, Steve feels, still treat the disease as a joke. “‘Kiss my friend and give him AIDS. I’m tired of him anyway.’ This type of comment not only undercuts the seriousness of the problem, but also insults the patient and his friends. Yet I’ve heard it made.”
Most people, Steve believes, are also unaware of the financial burden an AIDS patient must face. Loss of employment, limited sick leave and the long wait for disability payments often make it difficult for the patient to meet basic expenses, such as food and rent. “When I applied for food stamps,” he recalled, “I was turned down because my yearly salary was above the limit.”
Fortunately, Steve’s coworkers at Graduate Hospital signed a petition to extend his sick leave until disability payments took over. “Without their kindness,” he said, “I don’t know how I would have paid my bills.”
Attitudinal problems may also exist in the AIDS patient, Steve pointed out. “Too many of them try to hide their condition as long as they can. They’re afraid to come forward because of the stigma attached to the disease. Some even continue an active sex life, with the attitude, ‘If I got it, someone else should get it too.’ But it’s not a case of crabs or syphilis. You’re talking about somebody’s life.”
But the most serious problem from Steve’s perspective is gay people who view AIDS as an isolated, rather than community, issue. “If neither they nor any of their friends have it, they just don’t take it seriously. They fool themselves with the blind assumption, ‘It won’t happen to me.’”
Heroic Laughter
Steve’s mother and father were waiting to see him. Since the number of visitors at any one time is restricted, they could not come in until Dr. Bacchues, Harry and I had left. As Harry focused his camera, Steve threw an arm above his head and gave an exaggerated grimace of pain. “Let them see how bad it is,” he laughed, his face too bright and alive to be associated with any disease. When he returned to a normal position, Harry snapped the pictures.
Throughout Steve’s account, I had listened in stunned silence, interrupting with only an occasional question. I was thankful for the mask — at least it hid a trembling lip. But when the laughter and the smile lit Steve’s face, I felt a sudden rush of awe and affection.
Then I remembered where I had seen Steve before. Over a year ago, we had talked together in a local club, for almost an hour, while he was waiting for a friend.
On our way to the elevator, we met Steve’s parents. “How is my son?” an older man asked, shaking my hand.
A tight throat choked the answer I wanted to make: “Beautiful. Beautiful and brave.”
The Double Stigma
On the way to Jefferson Hospital, Dr. Bacchues explained the support group of which he is in charge. Part of the AIDS Task Force headed by Dr. Nicholas Ifft, the group currently consists of three persons — Bacchues, a psychiatrist and a social worker. At present, the group works with eight AIDS patients, three of whom are hospitalized. The youngest of the eight is 23 years old. Since participation is voluntary on the patient’s part, this does not represent the total number of AIDS cases in Philadelphia.
“Our purpose,” Bacchues explained, “is to maintain communication with the AIDS patient, supply him with whatever information we can and just to talk. Not all of them have the support network provided by Steve’s family and friends.”
Other patients, he added, push away lovers and friends when they realize they are dying. “They think it won’t hurt so much if the separation comes while they’re still living.”
Bacchues’ ultimate goal is to establish a support group like the Buddy System in New York. Volunteers help the patients when they are at home and visit them in the hospital. “The number of AIDS patients in Philadelphia is growing,” Bacchues said. “There are already more than three people could adequately handle. The problems are that no one is paid for his or her time, and for many people the idea is simply too depressing or threatening.”
In addition to the problems outlined by Steve, Dr. Bacchues pointed out that in some cases, the hospital staff simply don’t know how to react to a gay male. “There may be traces of homophobia in their attitude toward the patient — or they may be afraid of catching the disease.”
“Which disease?” I wondered aloud. “AIDS or homosexuality?”
Dr. Bacchues smiled. “That’s a good question. I’m not sure I have the answer.”
A Quiet Despair
The door to Bill’s room in Jefferson Hospital was open. As we put on the gown and gloves required of all visitors, I looked at the sleeping patient. He was young (31), and even beneath the criss-crossed tubes running from his face and limbs, it was obvious that he was classically handsome.
When we entered the room, I immediately noticed the photograph of two men proudly hanging on the wall — Bill and his lover of six years. Surrounding the picture were get-well cards from friends and relatives.
In December of last year, Bill was diagnosed as an AIDS patient and admitted to a suburban hospital with an unexplained paralysis of the left side of his body. Frightened by the disease, the anesthesiologist refused to put him to sleep for the required biopsy of brain tissue. Bill was then transferred to Jefferson Hospital in Center City.
The biopsy revealed that he was suffering from progressive multifocal leukoencaphalopathy (PML), a rare brain disease for which there is no known treatment. PML is yet another opportunistic infection resulting from AIDS. When his condition temporarily improved, Bill was allowed to go home for Christmas. He was readmitted shortly thereafter.
About three weeks ago, Bill totally lost the ability to speak. His sight and hearing are also seriously impaired. There was no way to communicate with him except through touch. Dr. Bacchues makes his presence known by squeezing Bill’s hand.
There’s no hope for improvement,” Bacchues said. “He’ll remain in this condition until he dies.”
I was shocked by his words. The vital beauty of the smiling young man in the photograph denied their truth. Then my eyes returned to the patient asleep in the bed. With a quiet despair, I knew that Dr. Bacchues was right.
*Author’s Note: A friend who read this article in manuscript form was concerned that some readers may view it as a sensationalized or exploitative treatment. Similar charges could be leveled against the accompanying photographs by Harry Eberlin. Our purpose is not to exploit the tragedy of AIDS patients, but rather to communicate the reality of their situation — a reality that, as Steve pointed out, is not apparent in medical analyses or statistical reports. We hope that we have achieved that goal.