Intrigued by an AIDS support group, Deborah Schoch solves the ‘oh-no, not-that-again’ problem
The L.A. Times’ Deborah Schoch encountered a familiar problem: a good human-interest story that is connected to a larger theme that threatens to make the story sound too familiar. In this case the major theme was AIDS. The year was 1993 and it was hard to find a single day that passed without an AIDS story appearing somewhere in the newspaper. Deborah’s thought her target–a support group for HIV-positive people–had a distinctive angle, but making sure the story reflected what her heart told her was challenging. So was the problem of getting the piece done between other mandatory assiognments.
Deborah, who later became a Neiman fellow and now covers local and national environmental issues for the Times, takes you through the process:
This story started as a routine medical feature in the Times’ South Bay Edition. Someone told me about a woman named Ann Copeland, who’d helped start a group for women who, like her, are HIV-positive.
On an evening in June, I walked into a peach-walled office in Hermosa Beach and found five middle-class women in their 30s and 40s, all infected with the virus that causes AIDS.
The women teased one other, laughed a lot, exchanged practical advice. I was fascinated by how the virus had cut these women off from mainstream society–and how, at the same time, it created this tight-knit group. I decided then that I wanted to write about how it felt to be female, suburban and diagnosed with HIV.
The process of how the story came together illustrates how ”collecting string” can work successfully in reporting on a subject over time, in between other stories. It also shows some drawbacks in that process.
During the summer and fall, I talked almost weekly with Copeland, the only group member willing to be identified by name. With her help, I convinced other women to consent to interviews as long as their names were not used. In time, an atmosphere of trust developed. The women began opening up more, revealing small but intriguing details. Linda puzzled how to tell her mother that her pneumonia was really a sign of AIDS. Jenny offhandedly pulled off her shoe to show me the stripes on her toenails caused by anti-viral drugs. I kept filing notes away.
By January, I had accumulated a hefty pile of notes and 10 hours of taped interviews. I wanted to move ahead and write the story. But, in discussing the structure, my editors and I uncovered a seemingly insoluble problem: the women’s insistence on confidentiality. If we couldn’t say that Linda lived in ”x” city and worked at ”y” job and ate at ”z” restaurant and worked out at ”zz” health club, how could we ever convey the sense that these were real people? We decided to do two articles–a story about the group, and a profile of Copeland that could contain those details and bolster the first story’s credibility.
The Copeland profile virtually wrote itself, but the longer group story was harder. The original draft opened with a description of the women arriving at that June meeting. It was clunky–and besides, the meeting was now seven months old. That, of course, is the biggest pitfall of researching stories over time: The material loses its immediacy very fast.
My editors and I also worried that so many readers were weary of both AIDS and support groups that a piece combining both would never carry their interest, unless the women’s stories were extremely compelling.
Then events overtook the story. Linda was abruptly hospitalized with a soaring fever and the symptoms of MAC, a serious bacterial infection that can emerge late in the course of AIDS. I watched the other women react, heard the fear in their voices. It was a jolting reminder that these people I’d come to know were all facing a graceless death.
Yet it was Linda’s illness that helped pinpoint what was most compelling about the material I’d collected. It showed women living double lives, meeting in secret, getting hospitalized in secret, painting nail polish over black lines. If secrecy became the central theme, the women’s reluctance to identify themselves–what had seemed a serious flaw in the story–could actually be turned to the story’s advantage.
I had been reading the Providence Journal’s writing guide, a collection of how-I-wrote-the-story essays published in the mid-1980s. One of the stories pointed out the technique of ”starting near the end,” making a story more powerful and immediate by first capturing the characters late in their journey, a step away from the end, then heading back to the beginning and taking the reader through the full story to the conclusion.
So I did away with that stale lede about the group meeting. It was a scene I could use later, to introduce another section of the story. Instead, I would start in the present, with Linda’s hospitalization.
The weekend I chose that approach, I met one of the women at a beachside cafe, and she described how group members had braved a rainstorm the night before to visit Linda in the hospital. While she was talking, I suddenly saw what specific scene would work as the lede. I would show the women in action, rushing to Linda’s bedside. That would pull readers into the action, emphasizing that this was a story in progress. Linda’s illness–and the women’s reaction to it–would become the unifying force to propel readers through the article. I stayed behind in the cafe long after my interview left, writing long-hand in my notebook.
Resolving the lead made the rest of the story’s logic relatively simple: After an overview section on women and AIDS, I wrote the stories of three women in separate segments, each segment intended to be an example of a specific, unique problem faced by women with AIDS. Linda’s story showed a woman dealing with complex family issues; Danielle talked about marriage and pregnancy; Jenny demonstrated the problems of late diagnosis.
I tried to be ruthless about using only the material that illustrated specifically how women are affected by AIDS. That meant hitting hard on issues like pregnancy, caretaking, yeast infections–and it meant leaving out many poignant images that didn’t build on the story’s theme.
I wanted the story to conclude with Linda’s illness, echoing the opening scene. But Linda’s condition kept wavering, and I began worrying she would die. She did not want to be interviewed in the hospital, so I kept writing and waited. The day she went home, I called and asked if I could come visit, and she agreed. She was extremely weak, and I felt as if I was sapping her limited energy by asking for details, more details–but I was also facing a deadline. As it turned out, she talked frankly about how her body was deteriorating, and when she thought she’d die.
At one point, she vanished into her bedroom and came out with the framed photo one woman had given her, of the group members together. I asked whether she’d kept the picture on her bed stand in the hospital. She’d told me that she’d never let familiy visitors see the picture; she feared they’d guess the true nature of her illness from the red AIDS ribbons the women in the photo were wearing. As she talked to me, she held the photo in front of her, staring at it, and then turned it face down on the table. I drove back to the office and wrote the ending.
One of the biggest challenges was deciding how clinical this piece should be, which is a problem with any AIDS article. I wanted the women’s stories to dominate, so I didn’t focus on technical issues such as T-cell counts. I did get the women’s written permission and interviewed their doctors to make sure we fully understood and confirmed their medical conditions. Although the doctors are never quoted, their perspective allowed me to write with more medical authority. My editor made the suggestion of inserting the latest AIDS figures and a national perspective high up, which injected greater urgency to the issue of women and AIDS.
Enormous amounts of material never made it in. During the final week, I cut out one woman entirely, after two in-person interviews, because a 70-inch story isn’t long enough to profile four women adequately. Many details of that difficult interview with Linda also got cut for logistical reasons.
Reading the piece now, I wish I’d darkened the mood somewhat and preserved Linda’s comments about death. The article soft-pedals the death issue; I would have liked to include Linda or another women talking about fears of MAC, wasting syndrome and dying alone.
But in spite of its flaws and omissions, the story was stronger because of the prolonged reporting. I’m just glad that my editors had faith that all that ”string” collected over the months would result in a readable story.
”FORGOTTEN IN WORLD OF AIDS”
By Deborah Schoch
A cold winter rain fell on Hermosa Beach the day the calls went out: Linda was back in the hospital and nobody knew exactly what was wrong.
Ann heard the news first. She stationed herself at her wide dining room table and started dialing.
One by one, the women arrived to stand vigil at Linda’s bedside, bringing flowers, magazines, a framed photograph. They fretted as her temperature soared toward 103. They questioned Linda’s doctor about medication. Should she be taking Tagamet? When was the bone marrow test scheduled?
Linda, a fortyish mother of two grown children, was found to have full-blown AIDS more than a year earlier. Proud and self-sufficient, she never told her mother–only her children, her best friend, then her brother and sister.
So when she took ill, the role of family fell in part to a secret society–half a dozen women Linda had met through a Hermosa Beach support group, all of them infected with the virus that causes AIDS. Most were living middle-class lives and kept their illness largely to themselves.
“Everything I do outside my (AIDS) meetings is like putting up a front,” said Linda, now home from the hospital after a two-week stay.
Some might consider these women relatively lucky. Most have health insurance, giving them access to private physicians. Most have husbands or partners; four have children. And several continue to work in full-time jobs.
But because they are female, they are a forgotten minority in the world of AIDS.
Women account for just 27,000–or 11%–of the quarter-million AIDS cases reported nationwide since 1981. Yet they are contracting the disease at a higher rate than men, often through heterosexual sex–the fastest-growing means of infection among women.
Last year, the number of newly reported AIDS cases among women was 9% higher than the year before, compared to a 2.5% increase in new cases among men, according to the U. S. Centers for Disease Control and Prevention.
And women lack the support network that the male homosexual community has built over the last decade. Dependent on a medical community that is often unaware of their unique problems, infected women often suffer alone and in silence.
Middle-class women are by no means immune from this cruel isolation. Because few would expect them to have AIDS, they feel like curiosities–making it that much harder to reach out for help. In fact, sometimes they do not discover for years that they have been infected with the human immunodeficiency virus, which causes AIDS, because their doctors do not believe that they are at risk.
“A middle-class woman who’s out in the suburbs, who has a cough, weight loss–a doctor might not think of (HIV),” said Dr. Constance Wofsy, a UC San Francisco professor of medicine and an expert on AIDS in women.
So, just as gay men did a decade ago, women are beginning to mobilize. At last count, more than a dozen women’s support groups have sprung up across the Los Angeles area. The Hermosa Beach group formed in the summer of 1991 under the auspices of Women at Risk, a small foundation that now operates two other groups, in Santa Monica and San Luis Obispo.
The stories of its members provide a window on the crushing alienation felt by women infected with the virus–and their tenacious struggle to help themselves.
One avoids telling her neighbors about her diagnosis, fearing that they would forbid their children to play with her young daughter. Another paints her toenails with polish to hide the black lines left by antiviral drugs. A third wears hats to hide her thinning hair.
Most of these women are suburban residents in their 30s and 40s who acquired the virus in the 1980s through unprotected heterosexual sex–the second most common cause of AIDS in women, ranking closely behind injected drug use. They so dread the labels that neighbors and co-workers might place on a woman with the virus (“promiscuous,” “slut,” “drug addict”) that they let virtually no one in on the most devastating news of their lives.
Fear of disclosure runs so deep that all but one woman in the Hermosa Beach group asked to be identified by pseudonym. The exception, Ann Copeland, recalled that after she made her diagnosis public two years ago, she never again heard from some people she considered her friends.
So they gather every two weeks at a Hermosa Beach psychologist’s office.
“We meet,” Copeland said, “in a big closet.”
On a Friday evening in June, six of the women, mostly well dressed, some with jewelry and makeup in place, settled into comfortable chairs in the peach-walled office with two parlor palms, laughing and exchanging snippets of news.
Then Linda, a pretty, small-boned woman, started wondering aloud how much longer her pretense could last.
Co-workers were beginning to look at her strangely when she left her office for yet another doctor’s appointment. She needed naps after work. Her reflexes were slowing.
“I get things, and I drop them and break them,” she said. “I’m angry all the time. I can’t do my job. And I don’t want to tell them why.”
She was found to have AIDS nine months earlier, after developing a persistent lung infection that put her in the hospital. Doctors discovered that she was suffering from pneumocystis pneumonia, a feature of full-blown AIDS. She must have been carrying the virus for a year or two or longer, her doctor said. Tests showed that her immune system was at only a fraction of its normal strength.
Linda did not know who infected her. It might have been two men she dated after her divorce, or even her ex-husband.
A quiet but energetic woman, she used to head to the gym three times a week to pull on brightly colored leotards and leap and bend her way through aerobic dance class. She loved to dance. Now, her stamina waning, she has not been to a class in months.
“Everything’s going downhill,” she said.
Some of the other women in the room suggested that she consider quitting her job–”getting out of that Superwoman stuff that we all do,” Ann said.
Linda wavered. She wanted to spend more time with her children while she had the energy, but wondered how she would make ends meet. And what would she tell her mother, who already sensed that something was wrong?
“I can’t do this to her. . . . I know, right away, she sees death . . . her little girl, her baby.”
“It seems you’re taking care of a lot of people right now,” another woman observed, gently. She was speaking to a haunting problem shared by many women with HIV and AIDS: You expend so much energy being a caretaker that you fail to give time or attention to yourself.
Linda paused. “I think I deserve something, especially now. I see myself as a good person . . . and this happens!”
“You’re being punished!” Ann said good-naturedly.
A strain of dark humor pervades these meetings as they tease one another about common issues: guilt, shame, fears of infecting others.
One woman ruefully recalled how nonchalant she used to be when she cut herself chopping food in the kitchen. It was no big deal. “Now, I cut my finger or get a hangnail and bleed–I freak!”
Another woman chimed in: “I almost feel like I should be wearing a bracelet that would only appear if you’re in a tragic accident. Or, it comes up on your forehead: ‘Please don’t touch me.’ Or, ‘Use gloves.’ ”
For some in the Hermosa Beach group, the virus has dimmed hopes of having children. Danielle, approaching 40, lingered over a cup of cafe latte and described her evasiveness with friends on the nagging baby question.
She used to tease a newly married girlfriend that it was time to get pregnant. The friend produced a glowing, healthy baby. Then Danielle got married. By this winter, it was her friend’s turn to goad Danielle toward pregnancy–having no inkling that nearly four years ago, Danielle had been infected with HIV.
“With a 30% chance of passing it on, there’s no way I’m going to have a baby,” Danielle said.
Her husband has long known about her condition–they married after her diagnosis. But how to explain the situation to her friends? When they inquire about her plans for children, she tries to act low-key. It is not time yet, she says. Not time. Or, more cryptically: “We’re thinking about it.”
Fewer than 10 of her friends and relatives know that she is HIV-positive, and she wants to keep that circle small. Her life is crisply divided between those who know and those who see only her outward persona, that of a writer and UCLA graduate. She likes the freedom it gives her; she can forget about the illness when she is immersed in her work.
She identifies with the late Rudolf Nureyev, whose physician said that the ballet star kept his battle with AIDS secret in part because he wanted to live a normal life.
Four years ago, before meeting her husband, Danielle dated a man who she believes infected her with five sexually transmitted diseases. Hoping to cleanse her body, she took fistfuls of antibiotics. Two years later, as a final safeguard, she asked her doctor to test her for “all known sexually transmitted diseases.” To her shock, she tested positive for HIV.
Last year, she married. While some in the group continue to have sex using condoms, she and her husband have chosen to abstain from intercourse. Researchers say women are less likely to infect men than men are to infect women–two to five times less, according to one expert. Danielle says marriage has brought a sense of stability to her life. Her husband says he wed her because he loves Danielle and wants to be supportive. “I want her to be happy, and not worry about what she has,” he said.
Danielle starts each morning by swallowing seven pills. The drugs have stabilized her medical condition–she remains asymptomatic–but they can cause side effects. Painful sores festered in her mouth after she started an antiviral drug, and she asked Copeland for advice.
Take aspirin, said Copeland, who knew because she takes the same drug herself. Put aspirin on your tongue, and it goes away. Danielle did, and the sores vanished.
The women exchange the names of gynecologists and dentists who treat infected patients. That saves them the embarrassment of calling doctors’ offices to ask: “I’m HIV-positive. Will you treat me?” Three of them now see the same Santa Monica gynecologist.
Even as they teach one another, some women are attempting to educate the public about AIDS. Copeland is the most outspoken, appearing on television shows and speaking at conferences. The group’s youngest member, Jenny, 25, whose condition was diagnosed last summer, is learning to make her voice heard, cautiously, in controlled settings.
Jenny could have been dressed for a wedding in her elegant ivory suit with lace at the throat, gold earrings, hair carefully set. This was her first speaking engagement, before an African-American professional women’s group at a Holiday Inn in Irvine. She was there to discuss how symptoms of HIV often go unnoticed in women.
She started uncertainly, a slight tremor in her voice. But she gained self-assurance as she described the yeast infections that would not go away.
“I have a lot of anger inside of me because it took so long for me to be diagnosed,” said Jenny, who introduced herself to the hushed crowd by her first name.
Five years ago, Jenny was trying to get pregnant when she developed a nagging vaginal yeast infection. Her doctor prescribed a common cream called Terazol-7. Jenny emptied tube after tube.
Maybe her nylon pantyhose was making the problem worse, her doctor suggested. Maybe it was the dye in her bathroom tissue. She switched to white toilet paper. The infection persisted.
She began losing weight. When she developed stomach problems last summer, a new doctor arranged for an HIV test, which disclosed a virus so advanced that it had seriously weakened her immune system.
Last fall, after lobbying by AIDS activists, the Food and Drug Administration asked makers of over-the-counter creams to display warnings that persistent yeast infections may be a sign of HIV. An FDA spokeswoman said all companies will be adding the labeling, although no deadline has been set.
Jenny suspects that she was infected by a former boyfriend at least eight years ago, when she was a teen-ager. She married her husband seven years ago; he has tested negative for the virus but gets retested every six months.
She is grappling with other gynecological problems. Like many women with the virus–including two others in the group–she has received abnormal results on a Pap smear, which detects abnormal cell changes in the cervix that can be a precursor to cancer. Her gynecologist says that although Jenny’s test showed no evidence of pre-malignant changes, she should be rechecked every three months.
As of Jan. 1, Jenny’s diagnosis changed to AIDS with the advent of a new federal definition of the disease that encompasses HIV-positive patients with fewer than 200 CD4 cells, or T-cells, per microliter of blood. At last count, Jenny had 75.
As she finished her speech in Irvine, one woman in the audience cried openly. Several approached Jenny and two other infected women who had also spoken, thanking and embracing them.
“I honestly thought that I would be afraid to walk up to them, shake their hand, hug them,” said one listener, Pamela Hills of Huntington Beach, who admits that she used to associate AIDS with promiscuity. Then she heard Jenny and her colleagues speak. “They slept with a man who happened to be infected. I realized it could happen to anyone.”
Gradually, the women in the Hermosa Beach group have begun venturing out together, beyond the security of their closed-door sessions. Sometimes they meet for dinner or coffee. In December, they joined an AIDS walk in Santa Monica to raise money for Women at Risk.
The weather was gray and cool, but the women bundled up in sweaters and walked nearly four miles together. Some relatives came along–among them, Ann’s husband and two sisters, and Linda’s son–infusing the day with the festive air of a class reunion.
It turned into one of those rare occasions when the women could introduce their relatives and friends to what Linda calls “my little family away from my family.” She was surprised when her son offered to accompany her, but she is grateful he was there to witness the warmth that has grown among the women.
Someone brought a camera and snapped a photograph. Linda’s son told her later: “I think you’re very lucky.”
Soon afterward, Linda was back in the hospital.
When Ann rushed to her side with a bouquet that rainy day, she found Linda weakened and feverish, an oxygen tube protruding from her nostrils. “But she had a little bit of lipstick on,” Ann said. “She had earrings on. I just felt she’d be OK.”
Each day in the hospital, Linda went through the ritual of applying her lipstick. The nurses teased her but she insisted. Makeup became a method of recharging.
So did the visits from the other women. On the spur of the moment, they decided to hold their regular biweekly meeting in Linda’s hospital room, crowding eight chairs into a semicircle around her bed.
Linda was tested until doctors pinpointed her problem– Mycobacterium avium complex, a bacterial infection that can develop late in the course of the disease. Her T-cell count had plummeted perilously low, making her vulnerable to such “opportunistic” infections as pneumonia.
Her doctor prescribed four new medications, bringing her daily total to nine. Eventually, the drugs would allow her to return home, her infection stabilized.
During Linda’s hospital stay, one of the women brought her a small memento: the AIDS walk snapshot, encased in a stand-up wood frame. It showed Linda, her son, Danielle and another member of the group standing together, grinning into the camera, each woman wearing a small red ribbon.
Linda propped the frame at her bedside so she could gaze at the faces of her other family. Then she heard that she would be receiving a visit from another friend, one who did not know that she has AIDS.
How would she explain the photo? Could she say she simply went to the event because she wanted to help AIDS victims? Finally, reluctantly, Linda turned the photo face-down and laid her medication on top of it.