November 1, 1989
November 1989, pp. 159-162
By BROOKE KROEGER
There was just no point in joining an AIDS support group for women. What, besides impending death, did she have in common with convicts and heroin addicts? She’d graduated from college and become a professional, a twenty-eight-year-old comer in her field, earning forty-thousand dollars a year, the daughter of a respected upper-middle-class family. A gay men’s group might have made a better demographic fit. For the time being, no appropriate group exists. Most of the heterosexual men and women with the background to be helpful to her are walking around with the AIDS virus and don’t even know it.
But then, neither would she, if not for a series of coincidences that bore the mark of Providence. This is why she has agreed to be interviewed. She thinks there is a message she had better get across. In deference to her family, she asks that her name and any identifying details be excluded from the story.
What makes her story worth telling is that she is utter ordinary, the girl next door. It was only by a fluke that a doctor would think to suggest that someone with her socioeconomic profile and no symptoms should be tested for AIDS ‘ and that the test would come back HIV-positive.
The story began with a case of fatigue and a stubborn rash n the folds of her groin that would not go away. She would have ignored them both if the raw skin hadn’t been so aggravating in the summer heat of 1988. And even though she had good reason to be tired�fourteen hour, adrenalin-charged work days would wear anyone out ‘ it felt too much like the mononucleosis of her adolescence. Time for a physical.
The physician examined her carefully. The fatigue was easily explained away. She was working too hard. As for the rash, nylon stockings and relentless humidity made it a common summertime affliction. Still, the rash struck him as meaner than most. He ordered a full blood workup for the new patient.
“So,” he said, “it’s the 19080s. Tell me about your sex life.”
She quickly determined where this conversation might lead, but found the doctor easy to talk to and had no problem answering his questions. She had lost her virginity at twenty, the oldest among her friends, and married the first man she slept with, but divorced him two years later. Depression dulled her very Roman Catholic sensibilities and she “got wild” for about two years. Though she had been celibate for the nine months before the examination, there had been fifteen partners before that. For the most part, they were friends who became lovers or lovers who became friends. There were two one-night stands, but the men were not strangers. Nothing kinky. No violence. No one the least bit exotic. No anal intercourse except for one distasteful, twenty-second attempt while she was married that did not result in penetration or ejaculation. And no condoms; they didn’t seem necessary. She knew all these men of the Brooks-Brothers-Suit-Brigade. There is, to this day, no reason to think that any of her partners were bisexual or users of intravenous drugs or frequenters of prostitutes. None of them is known to be sick.
The doctor asked her if she would like him to order an AIDS test. He had no particular reason to suggest it, but was mindful of the times. The test would involve nothing more than another entry on the printout of results for which her blood had already been drawn.
She needed only a moment to decide. It was the 1980s. Responsible people check their cholesterol and submit to the AIDS test.
“Sure,” she said. “Do it.”
Over the coming weeks, the test would be repeated twice to confirm its devastating result. From a source that remains unknown, she had contracted the HIV infection. Her most recent tests show that the virus is active. Nevertheless, she feels terrific. She has gained a not-necessarily desired twenty pounds since she was diagnosed. She swims everyday, goes horseback riding, foxhunts, plays squash. Her doctor says he thinks the virulence of her rash may have been an indication of a taxed immune system, but this is hindsight. If it weren’t for having casually agreed to being tested, she would have walked around for who knows how long oblivious to her infectiousness. There is no published estimate of how many others may be in her situation.
“I could be acting as wild as I was after my divorce or even wilder,” she says. “I could be married and giving this to my baby.”
The case of Alison Gertz, a twenty-three-year-old New Yorker raised on Park Avenue, is similar to this woman’s in that their backgrounds make them atypical of the most common AIDS sufferers in this country, and a cause for concern to the general heterosexual population. What distinguishes the two cases is that Alison Gertz was able to identify the source of her infection: a bartender whom she says she slept with once. He since has died of AIDS.
By the end of May 1989, the Centers for Disease Control (CDC) reported a total of 97,193 cases of AIDS in the United States since 1981, and of that number 56,468 deaths. Heterosexual cases accounted for only 4 percent of that total or 4,305 cases. To qualify as a heterosexual case, the individual must report specific heterosexual contact with someone who is considered to be at high risk for AIDS ‘ a bisexual, an I.V.-drug user, a hemophiliac, someone who received a blood transfusion before screening began, or someone of African or Caribbean origin (in those countries, AIDS occurs predominantly in heterosexuals.)
The woman interviewed for this story is not yet a statistic. There is no national register of people who carry the HIV virus but have not yet developed AIDS. Fewer than thirty states require reporting of those who test HIV-positive, and she does not live in one of them. Because the source of her infection is not known, when she does develop AIDS her case will have to be classified a “No Identifiable Risk (NIR).”
Nonetheless, it is presumed that she was infected through sexual contact. Fully 75 percent of AIDs sufferers who have been listed as NIR ultimately are moved to other categories after follow-up studies reveal that they or one of their partners actually belonged to a high-risk group. The source of infection for the other 25 percent remains a mystery.
Jeanette Steht-Green, M.D., a section chief in AIDS surveillance, CDC, explains why there has been no move at the national level to keep count of those who are HIV-positive but not yet suffering from AIDS. “Many of those who would be HIV-positive are not motivated to get tested,” she says, “so there is no way we could count all of them. Many are denying their risk. Many may realize their risk but don’ t feel that getting tested will change anything anyway.”
The CDC estimates that the total number of people in the United States who are HIV-positive ‘ from all causes ‘ to be somewhere between 1 million and 1.5 million. Working backwards from that figure, Jody Robinson, M.D., a Washington, D.C. physician with a background in immunology, epidemiology, and international medicine, estimates the number of infected heterosexuals to be as high as 400,000 (regardless of how they got the virus.) If Dr. Robinson is anywhere near correct ‘ and no one at the CDC is willing to say ‘ then the potential threat to the general heterosexual population could be greater than usually presumed. These infected persons can be assumed to have relations from time to time with people who would have no other risk of infection.
“I think this is a reasonable estimate,” says Elizabeth M. Whelan, Ph.D., president of the American Council on Science and Health. “The I.V.-drug-using community is the potential bridge to the general spread of AIDS.”
When the woman interviewed for this story asked her doctor if she needed to furnish him with a list of names and addresses of all her sexual partners, he said, “No, only if you want.”
“Only if you want?” she shot back. “ONLY IF YOU WANT? What the f—- is that when someone is out there spreading death?” She thought surely it would be required by law.
The federal government does require any state accepting certain types of federal funds for its AIDS programs to set up partner-notification services. However, it has been left to each state to interpret this requirement. “By definition, the process is voluntary,” says Cathy Raevsky, deputy section chief of the Sexually Transmittted Diseases/AIDS Section of the Colorado Health Department’s AIDS program, considered to have one of the most aggressive notification systems in the country.
Together, the woman and her doctor drafted a letter, sent without signature, to all the men she had slept with. She located all but one of them. The letter explained that she had contracted the HIV virus and urged that they be tested.
“All of them know how to find me,” she says. “You would think that there would have been a letter from at least one of them, even an anonymous one, saying he was HIV-positive and I should be tested. But I’ve hard nothing and it’s been almost a year.”
Dr. Robinson has brandished the threat of AIDS to the general, heterosexual population in a series of op-ed page pieces for The Wall Street Journal, The Washington Post, the St. Louis Post-Dispatch, and The Atlanta Constitution. His premise is that people should not be lulled into a fake sense of security because of their conventional lifestyles or the relatively small number of recorded cases of heterosexual AIDS in this country. His premise is that people should not be lulled into a false sense of security because o their conventional lifestyles or the relatively small number of recorded cases of heterosexual AIDS in this country.
As he explains it, the most efficient means of transmitting the AIDS virus are anal intercourse and inoculation into the vascular system. “The has skewed the sense of this disease in the eyes of the public because of the preponderance of cases who have gotten the disease through these extraordinarily efficient means.”
If the median incubation rate for the virus is ten years, and the first cases in this country were only recognized eight years ago in 1981, then it make sense that the first two waves of infection were among people in those communities in which infection could occur most efficiently ‘ homosexuals, hemophiliacs, heroin addicts. Those who have been infected by somewhat less efficient means ‘ vaginal intercourse ‘ would likely take longer to surface.
For Dr. Robinson the experience with AIDS in Africa serves as a case n point. There, the ration of infection among heterosexual men and women is 1:1. Here, the ratio is 4:1 men to women. In Africa, he believes, the disease has been spreading longer, even though homosexuality and I.V-drug use are rare. It also is a place with a high degree of untreated venereal diseases, untreated skin sores, and uncircumcised males ‘ all of which enhance the spread of AIDs infection. In short, if the Africa example is adjusted to the prevailing conditions in this country, it may well mean that the worst is yet to come.
At CDC, however, the view is less alarming for those not already considered to be at risk. Nevertheless, there is a cause for concern.
“We are not seeing an explosive increase in heterosexual AIDS,” says Mary Chamberland, M.D., a medical epidemiologist with CDC’s AIDS program. “But that is not to minimize the problem. In big urban centers, among African-Americans and Hispanics and drug users and prostitutes, it is a big problem. But for most people, heterosexual AIDS is not something that poses a very significant risk.
“But the risk is not zero,” she says, “and the woman you have just described is a very good example. It points out the need for education. Everybody does need to take prudent precautions.”
Our girl next door has stopped spending time worrying about who her “donor” was. What’s important is maintaining a good outlook; eating a high-protein diet; monitoring her T-cell count for signs of a turn in her condition. She still spends time with her good friends and they are many. She is someone people like to be with. She has a great sense of humor. She’s someone with good values who likes to party.
She is at peace with her situation. It is difficult to imagine the emotional upheaval she has weathered in the past ten months ‘ the shock of discovery, the anxiety attacks, the depression, the suicide attempt. “You don’t know me,” she says. “But you can’t image how uncharacteristic my behavior was.”
When the test result first came back, she says her reaction was primordial. “My hands and feet went ice cold. I thought I would lose control of my bowels. I stood up and started pacing like an animal in a cage, looking out the window. I kept focusing on the shame. There is so much shame attached to this illness.”
Her sister, brother-in-law, and their two children arrived at her apartment, by chance, to spend the weekend.
“I was in complete shock,” she says. “When my sister asked what happened at the doctor’s office, I told her I was anemic and had to take it easy. I love to eat. We ordered a pizza and I couldn’t eat it. Nobody would believe there could be a pizza on the table and I wouldn’t eat it. My heart was racing out of my chest. I know now I was having an anxiety attack. The doctor had given me a prescription for Valium. I had never taken it before, not even for a back injury. But I filled it immediately. I needed to get my pulse rate below one hundred. I lost nine pounds getting through that weekend. I thought I was wasting away.”
Her sister left; Monday morning she called work and told her boss she had pneumonia. She bought a first-class air ticket on the first possible flight to see her brother.
“It was like a bad Bette Davis movie. It was eight-thirty in the morning and I was slugging Bloody Marys one after the other. And smoking cigarettes. The stewardess didn’t know what to make of me. I didn’t know how sick I was. I was only dealing with death. Only death.”
Her brother calmed her down, got her thinking straight, and put her in touch with a lawyer so she could understand her legal situation. Subsequently her parents and sister were told. The whole family has been a mainstay of support.
But the journey she started toward deepening her religious life stopped cold when her first test result came back. She was severely depressed. She went through a phase of seeing the world as one big germ ‘ compulsively washing her hands, being afraid to touch doorknobs, avoiding hospitals and sick people, fearing any sneeze in her presence.
The worst bout of depression came at Thanksgiving. She attended her tenth high-school reunion and finished the evening with drinking and reminiscing and a 5:30 a.m. breakfast at the home of one of her oldest and dearest friends. She made her confession. The poignance was palpable. The friend and her husband then went upstairs to bed and she remained at the kitchen table with her bottle of Xanax, prescribed by a psychiatrist she had been seeing who had been no help at all. She doesn’t recall how many pills she took, but before she passed out, she called her sister, who rushed her to their mother’s house and then to a hospital where she spent a week recuperating.
“Until you’ve done this, you can’t imagine the humor,” she says. “They treat you like a psychiatric patient because you’ve tried to kill yourself and they make you have nurses around the clock to make sure you don’t try to do it again. I convinced them that I was fine and would not harm myself in order to get them to release me. But I was still clinically depressed, certainly still in danger. That tells you how much faith I have in psychiatrists anymore.”
She stayed with her parents for several days, lying in bed, crying, refusing to eat. Her mother would cry with her and that would make her feel worse.
Her mother left an Advent calendar by her bedside. For each day in the countdown to Christmas, there was a verse. She can’t remember which one, or what about the experience of reading it every day made the difference, but “something clicked,” she says. “I hadn’t prayed for three months, but this was perfect, as if it had been written for me. It was loving, forgiving, hopeful.
“And that’s when I started getting better,” she goes on. “That was my cure. You know, my family has all been praying for a miracle, for a cure, and after this, I said, �This is my cure.’ A cure is not only physical, you know. I started feeling and caring and thinking about life again.”
She tries not to moralize, knowing how pointless that would be. But she wishes those wild years had never happened, that she had possessed the wisdom at the time to realize how fruitless all the empty activity was. She wishes she had insisted on condoms and spermicides.
“The truth is, I could no more have pulled a condom out of my purse ‘ I couldn’t have even raised the question. There is so much pressure from men ‘ so much competition for so few men ‘ women will continue to say yes to men and be too bashful to be cautious. But there is just no dignity in finding out you have AIDS because you were too dignified to ask a man to wear a condom.”
As for now, she has taken medical leave from work. It will probably be permanent. She doesn’t feel sick in the least and she is not currently undergoing any treatment. A protocol was tried but proved too toxic for her system. Instead of experimenting with other drugs, her doctors think it is best to wait until she may really need them. In the meantime, she concentrates on simplifying her life. She contemplates entering a religious community and hopes to volunteer for an AIDS hotline. (“I’m sure I could handle the suicide calls,” she jokes.) She spends a lot of time with her family.
“I’m not withering away,” she says. “Just because it doesn’t look like I’m running frantic and busily producing doesn’t mean I’m not running frantic and busily producing.”
Getting involved with someone, she says, is not in the cards.
“My forever will be a lot shorter than his forever,” she says. “And that’s not fair.”
Neither is AIDs. But that kind of thinking is not part of who she has become.
Brooke Kroeger is a writer living in New York City.