FOR DEAR LIFE
Written by Janina Birtolo for Gulfshore Life
Photography by Jeffrey Camp
Five Southwest Florida women living with AIDS
Photography by Jeffrey Camp
Is there anyone in Southwest Florida who hasn’t yet heard of AIDS or HIV, its viral precursor? In the past decade, AIDS has become a constant, background presence in our culture. But people who have been overwhelmed by warnings, predictions and images of AIDS have a tendency to tune it—and those who have it—out. Facts like the ones that follow are often skimmed, skipped or forgotten.
In Florida, AIDS cases are increasing at a faster rate then in any other state in the nation.Overall, Florida ranks number three in the nation in number of AIDS cases, right after New York and California. In Collier and Lee Counties about a quarter of all people with AIDS are women. Since 1992, the number of new AIDS cases in all people has risen only about three percent nationwide. But in the same period, the number of new AIDS cases among women has risen 17 percent each year.
More than being dry and a little tough to read, statistics like these have another problem as well—they offer no insight, no stories, no lives behind the numbers.
Set the statistics aside for a moment. There are some people we’d like you to meet. Here are five HIV-positive Southwest Florida women who want to share their experiences because they want to help others avoid them. All are from white, middle class backgrounds. They range in age from 20-something to 5-something. None look sick. All are people you might pass in Publix and smile at. They’re living proof that AIDS does not discriminate. Unfortunately, other people do. That’s why only one of these women was willing to speak publicly; the others used pseudonyms.
“You have to be very careful who you tell,” says “Estelle.” “People are so afraid. My children would probably have to leave school if it became known their mom was HIV-positive.”
This fear is common and pervasive. And it’s not unfounded. Most of these women tell stories about what happened when they told the wrong person—the ridicule; the prejudice; the fright.
“That’s the really sad part of it,” says Margaret Janovic of the Lee County Public Health Unit. “You have to do an article like this and not use people’s names because discrimination is still prevalent in 1996.”
Pale, pretty and soft-spoken, April is a relative newcomer to the world of HIV. She was diagnosed HIV-positive in 1993, when she volunteered to donate blood. The news came as a shock. She had never considered herself at risk, and she still isn’t sure exactly when she contracted the virus. Monogamous for 16 years, she had a brief relationship after her long-term relationship ended. That’s the only risk she can identify.
“When they told me, I went into a state of denial,” she says. “I had four tests done. I kept thinking there had to be a mistake. I had heard about AIDS, but I hadn’t thought about it. When I accepted that I had (the virus), I realized that everybody should be educated about it.”
Professional help and the support of her family helped April to come to terms with her situation. But, although she realizes she is the same person she always was, she’s been dismayed at others’ fear of the disease—most disturbingly within the medical profession.
“I had gone to a doctor because I was having what I thought was a gall bladder attack,” she says. “He examined me and said I needed to get to the hospital immediately for surgery. I told him I was HIV-positive, and he said, ‘You’re not going to find a doctor to operate on you. Your best bet is to go to the emergency room and hope someone will treat you.’ He wouldn’t even get on the phone and speak to people at the hospital. I just wanted to go in a corner and cry.”
April’s belief that she should be honest and open about her condition with health care providers has brought her ridicule, insensitivity and even denial of service. After she tried to discuss alternatives, one doctor sarcastically asked, “Do you want me to throw herbs on you and dance around?” Now, she gets medical care—as well as understanding and genuine concern—at the Lee County Health Department.
April has faced similar frustrations with the governmental agencies that are supposed to be helping her. Growing fatigue has forced her to stop working. Yet picking up disability benefits from Social Security has proved a nightmare of a task.
“That’s why I paid Social Security all those years, in case something happened,” she says. “But I was denied three times. I just got approved, but they told me I’ll have to wait eight months to start getting the benefits. Now I have to stay alive and well for eight months. And with this disease, in a day your life could change.
Staying alive and well is a major concern for April, primarily because of her teenage son. Tears well in her eyes as she speaks of him: “He’s the most important thing in my life—my reason for living. I worry if I’ll stay well enough to get him through college. I’m afraid I haven’t taught him enough of all the things he needs to know before I die. If I haven’t what’s he going to do?”
But she’s not willing to go without a fight. “I’m a very outspoken person, and I like to do things,” she says. “I’m not going to live in a corner of my house. I want to start becoming involved now that I have time—help educate people or maybe help take care of other (HIV-positive women’s) children.
“I also want to deign a sculpture,” she continues, “and make it a symbol for people with AIDS. I want to leave my mark in life for all the people. AIDS affects everybody’s life, and it doesn’t go away when a person dies.
“I don’t think we should be numbers and unknown.”
The New York accent still is strong. Betsy could never pass for a Florida native. “You start to do things when you realize you have only so much time,” she says matter-of-factly. “My dream was to live in palm trees.”
Betsy’s discovery that she was HIV-positive was a bitter irony. Married to a former intravenous drug user, she had gone for the test to prove to him that his fears of having the disease and passing it to her were groundless. It turned out they weren’t.
That was in 1988; Betsy was pregnant with the couple’s third child at the time. Having had her children one right after another, she’d already decided to have her tubes tied after delivery, but the maternity nurses told her the HIV mad it questionable whether she could find a doctor to perform the surgery. One finally agreed—but only to the surgery. He never gave her a post-operative exam, never even came to meet her. The nursing staff put her in isolation, tagged her room with warning signs and tried to prevent her from entering the nursery to see her new baby.
“I have a big mouth,” says Betsy. “I called the head of infectious disease control and got the signs removed. I screamed loud enough, and they finally let me into the nursery. But they made me scrub down every time. I’ve gotten a whole different view of doctors from this.”
The fear and discrimination she found in the medical profession prompted Betsy to keep her condition a secret, even from her closest friends. When her husband got sick and eventually died in 1992, she told everyone it was cancer. She became an HIV educator as a means to explain her knowledge of the disease.
Betsy’s fears were reinforced when she went to enroll her youngest in pre-school. “When I told the woman (in charge) that I was HIV-positive, she pushed her papers away from me, and she wouldn’t let me use her stapler or pen,” Betsy recalls. “Then she told me not to tell anyone else in the school, they might not react as ‘generously’ as she had! I went home and called her supervisor.”
That proactive stance is typical of Betsy. She is determined—to take an active role in her medical care, to cut through the red tape to get the benefits to which she is entitled and to help other women do the same, and to keep this disease from progressing. So far, she has not had any opportunistic infections, at least none that she is aware of.
“As long as I’m just HIV-positive, I’m okay. If I slip into AIDS, that will be a whole other thing to deal with.”
For now, Betsy plans to keep living and keep working. Her good health and spunk allow her to remain relatively anonymous. She hasn’t told her own children about her condition, and no one can tell from looking at her that she is infected. Indeed, a youngster in one of her HIV education classes told her she was too pretty to have AIDS. She’s sure that her activism helps to keep her well.
Still, signs of reality keep her vision clear. “My first husband and I used to say we would buy some land and take in all the HIV-positive kids no one wanted,” she says. “Now I’m too tired.”
There is an air of little-left-to-lose that settles comfortably on Dolores; shoulders. A former prostitute and heroin addict, she avoided the truth of her HIV infection for as long as she could. Now she is one of only two survivors from a group of 10 who worked the streets together and one of very few who are still alive after a decade of infection. She would go public with her story, but…
The “but” sits across the room, eyes filled with a mixture of pride, admiration and just a little distance. This is Nancy, Dolores’ frown daughter, whom she’s just now getting to know. Nancy is no ashamed of her mother; she is emphatic on that point. Indeed, Dolores might not be alive today if Nancy hadn’t intervened, first by convincing her grandmother to let her mother come home and then by moving her mom to the sun and warmth of Southwest Florida.
But Nancy is cautious. She has a good job with the government. She’s not sure how her co-workers or supervisors would react. “I can’t afford to be shunned,” Nancy says. “It’s still very taboo, especially for women. AIDS is still considered a gay disease. Some people will probably always hate people with AIDS, because of fear.”
So out of respect for her daughter, Dolores keeps her anonymity. But personally she shrugs off the reactions of others. “I’ve learned who to tell and who not to tell,” she says simply. “I’ve just come to the conclusion this is something I have, like cancer.” Holding up a thumb and forefinger that almost touch, she adds, “I believe we’re this close to a cure or at least to a means to live longer.”
The talk of AIDS notwithstanding, the focus for Dolores and Nancy is not the disease, it is the opportunity they’ve been given to re-discover each other. “When I first found out, it was really sad,” says Nancy. “I never had her in my life, and it took her getting sick to come back to me. Now it’s important for me to establish some sort of relationship with her. I’ve enjoyed this time. I can’t think of one moment I resented. She really has been an inspiration to me.”
Dolores says it was divine intervention. “I was a heroin addict and I was sick and tired of being sick and tired,” she explains. “I asked God to show me another way. I was going to give up, but then He gave me one good day and another good day. I can’t even explain it. All I know is, I’ve never been in their lives, and now God has given me this year to do that.”
Dolores doesn’t look much beyond this year. She is a realist. She understands her chances. She has been HIV-positive at least since 1985. She has abused her body, lived in filth, eaten poorly and avoided medical care. By general standards, she shouldn’t have survived as long as she has. “When I first came to Florida, I was very sick,” she says. “The doctors expected me to live only a year. They don’t understand why I got so healthy again, but I do—it was the grace of God.”
And that grace, she believes, comes to her through the caring people she has gotten to know in Collier County. “I want to give all credit to Dr. (Alison) Nist and to my support groups at David Lawrence, AA and CARES,” she says. “Community Nursing comes three times a week, and Community Transportation takes me where I want to go. And I haven’t met one doctor in this town who hasn’t been wonderful.”
Dolores is grateful for every small kindness. Yes, she has her list of physical complaints—she’s lost her teeth and is losing her eyesight, she has hepatitis A, B and C, she has little energy and often little appetite—but even here, she is grateful because she knows things could be much worse. “It’s not so bad,” she insists. “Every day given to me is a gift—that’s how I look at it. I try not to worry anymore. To me, there’s no future, so the one day I have, I’m going to live the best that I can live it.”
Estelle’s careful grooming and fashionably elegant clothes belie her HIV-positive status. “I’m a shopaholic,” she says with a smile. “It’s one of my outlets. I live for today. I don’t deny myself anything.”
Still, the disease seems to have taken a toll. Estelle seems healthy, but she also seems fragile, bird-like, as if a too harsh look would break her. Her conversation darts like a bird, too—one moment recalling the 1984 blood transfusion that led to her infection, the next moment pondering whether to start taking yoga lessons or vitamin E. Anger surfaces when she recalls the doctors who promised her anonymous testing and then broke their word, only to be replaced by remorse when she confesses to lying about her HIV status on insurance applications.
“I’m not sure if there was a direct question on the insurance form,” she says. “But if there was, I lied. It’s terrible having to live like this and lie all the time. But if I didn’t, my children wouldn’t have insurance either.”
Similar fear keeps Estelle from going public with her story. She worries that her pre-teen daughters will be driven from their school by prejudice. She worries that lies she may have told will catch up with her. “At first I didn’t think I would see my kids grow up,” she says. “Now I’m caught in a trap of lying.”
Estelle’s story is an unsettled one, where the silences seem to say as much as the words. She found out about her HIV infection shortly after she and her husband moved to Florida in an effort to patch up problems in their marriage. “My husband didn’t want to have anything to do with me for a while,” she recalls. “He thought I was damaged goods.” Yet he stayed with her as she searched for a doctor who would treat her without violating her trust. During those years, Estelle says her husband also got her hooked on crack cocaine, an addiction she finally broke when HRS moved to take her children away. “I’ve been separated from my husband since September,” she adds. “I had to take him to court for battery.”
Perhaps because of the disease, perhaps because of other stresses in her life, Estelle has suffered bouts of depression through the years. One of her counselors has suggested the depression may actually be the start of dementia, a condition commonly associated with AIDS, but she’s not sure.
What she is sure of is that traveling to Miami in search of a doctor has been a lifesaver. “I said I was going to go to Miami to get a miracle, and I did,” she says. “Dr. Stein was wonderful. He hooked me up with the University of Miami, and they put me in a blind study of AZT and a study into heterosexual habits.” Through the medical studies, Estelle has been given various medicines and/or placebos. She suspects she’s been on AZT at least some of the time and that that’s a factor in her remaining healthy.
“Dr. Stein told me he knows who’d going to die when they walk through the door,” Estelle says. “He told me I would make it. I would be that one in ten. I’ve had no opportunistic infections. I did go through venereal and mouth ulcers, but they may have been caused by the (study) medications. Maybe I’m just a carrier.”
Estelle’s studies end shortly, and she’s unsure what course to follow next. “I hope that’s the direction my life’s going to take,” she says. “I just have to have faith.” She’s also considering taking courses to become an AIDS educator. That experience, she suggests, might help her find the courage to go public someday.
In the meantime, she’ll continue watching her diet, getting her rest and attending her support groups (she spends at least an hour a day in a support setting). And she’ll keep0 going to church and praying. “I go to Unity, and it’s been my salvation,” she says. “I believe all good things come if you do the right things.”
To many people in Southwest Florida, Cathy Robinson’s is a familiar face. For the past five years, she has traveled throughout the region, a certified AIDS instructor, teaching people about the disease—and giving AIDS a human face.
Cathy and her husband, Dan, were both diagnosed in 1991, when they applied for life insurance. A typical yuppie couple, the couldn’t imagine how they’d contracted the virus—until they discovered that one of the men who had raped Cathy in 1984, when she was working in a convenience store to put herself through college, had died in prison of AIDS-related causes.
At the time of diagnosis, Cathy was six months pregnant with her second child. Her daughter, Lindsay, was 10 months old. Cathy delivered Garrett in the same Jacksonville birthing center where Lindsay had been born, but the experiences were a study in contrasts. “With Lindsay, it was a wonderful experience,” Cathy recalls. “When it came time to deliver Garrett, I told everyone at the hospital I was HIV-positive. That was a big mistake. Several nurses absolutely refused to come in my room. After Garrett was born and my family left, this little African-American woman comes in and starts checking me out. Then she looks at me and says, I think you have a right to know this. One of the nurses called HRS to see if it’s child abuse to be HIV-positive and having children. I wouldn’t be shocked if you were black and being treated this way, but you…”
Although frightened, Cathy jumped into action. After calling a member of her HIV support group and being assured nothing would happen, she left the hospital just four hours after giving birth. “I knew at that instant that I was going to talk publicly,” she says. “This wasn’t going to happen to other women.”
Cathy’s and Dan’s life continued on a downward spiral, as jobs evaporated and bills mounted. They sold everything and moved to Clewiston, to be close to family. Things were fine for a while, until a local newspaper story disclosed their address and phone number. Then the hate mail and phone calls began. Cathy and Dan now live in a house in Moore Haven, arranged for by the reported who first printed their Clewiston address.
Through it all, Cathy has managed to retain an upbeat attitude—an attitude she learned from the gay men in the first support group she attended in Jacksonville. “Those guys taught me to live a long time,” she says. “If it weren’t for the gay men I know, I would be dead.”
By far, the most difficult task has been providing for her children, financially and emotionally, now and in the future. “In this state, if nothing is set up, the kids would go into HRS when we died, regardless of relatives,” she explains, adding that her will stipulates guardianship fro Lindsay and Garrett. “Men won’t take care of that kind of thing because they won’t think of it. I’m Cathy the caregiver. I take care of the kids and I take care of Dan.”
Cathy believes that her role as caregiver, coupled with the energy she draws from her educational presentations, is what has kept her relatively healthy, despite a T-cell count low enough to classify as full-blown AIDS. “Infected women with children live longer than (infected) men in general,” she notes. “Much of Dan’s illness is depression. You can choose to live with this disease, you can choose to exist or you can choose to die. Dan hasn’t chosen to live.
“I draw my strength,” she continues, “from Lindsay and Garrett, my parents, my brother, people like Rob (McMurrough at CARES) and the kids I speak to. I believe speaking keeps me alive. All that gives me the emotional support I should be getting from my husband.”
As she speaks of the lack of support, the discrimination aimed at her and her children, and the rape that started it all, Cathy’s voice is even and free from bitterness. For her, there is no end in sight, even though it may wait around the corner.
“You know, people look at me as an innocent victim,” she says. “All I keep thinking is, if I’m a victim and I get treated this way, how is the poor uneducated woman being treated?”
The Facts Behind the Faces
By now, most people are familiar with the facts: AIDS stands for Acquired Immune Deficiency Syndrome; it is caused by HIV, the human immuno-deficiency virus, which renders the body’s immune system unable to fight off disease; HIV is passed through the exchange of bodily fluids, most typically through unprotected sex, sharing contaminated IV drug needles or an infected mother giving birth; the groups most at risk fro HIV infection are gay men, IV drug users and people from various Third World countries.
According to Rob McMurrough, AIDS educator for CARES (Collier AIDS Resources and Education), “Florida ranks number three in the nation in number of AIDS cases, right after New York and California. And women in Florida are showing the highest rate of increase.”
“We’re seeing a lot of increase in HIV transmission through heterosexual contact,” adds Margaret Janovic, human services program analyst fro the Lee County Public Health Unit. “Society hasn’t accepted that this is a heterosexual disease. We have to get people to realize, if they’re sexually active, they’re at risk, no matter what their orientation.”
The specific problem for women is that, as with most sexually transmitted diseases, they may be more likely to contact HIV from an infected man than a man would be to contract the virus from and infected woman. “A woman has much more tissue exposed during sex,” explains Jennifer Faccioli, advanced registered nurse practitioner with Naples Obstetrics and Gynecology, “and the tissue is more prone to microscopic tears. Penile skin is much tougher.”
As a result, one time can be all it takes—a fact many women have difficulty accepting. “We see women in a state of denial, who say, ‘I’ve known this guy all my life,’” says Lisa Morgan, a Lee County Public Health Unit social worker. “They have to realize this disease doesn’t have any limitations.”
Faccioli has seen similar dangerous denial. “The rates (of female infection) are going higher because it’s not perceived as a problem,” she explains. “Younger women take for granted what their partners say. And older women are not well educated. A lot think, ‘I’ve only had one partner, so I don’t need to worry about it.’ They can’t accept that their man might have been unfaithful or had a homosexual experience years ago.”
Once infected, women face all the problems of infected men—and then some. Because AIDS is still primarily looked upon as a gay man’s or drug user’s disease, women often have to deal with an added layer of discrimination, a discrimination that seeks to classify them as drug addicts or prostitutes.
Equally disheartening is the reality that medical efforts to date have largely been focused on the male AIDS patient. “Women have been dying of unrecognized AIDS-related diseases,” says Faccioli. “The statistics are not really accurate, because so many women are not diagnosed or are misdiagnosed.”
The confusion is easy to understand. An early symptom of HIV in women is repeated yeast infections. But yeast infections are one of the most common problems for all women, HIV-positive or not. The leading cause of death among HIV-positive or AIDS females is cervical cancer. But cervical cancer regularly afflicts those without HIV, too.
Until a couple of years ago, the CDC didn’t even recognize female diseases as AIDS-related, and women who didn’t catch more typically male diseases, such as Kaposi’s sarcoma, didn’t qualify for AIDS victim benefits and treatments. (The CDC now defines full-blown AIDS as anyone having one of 23 specific diseases or a T-cell count below 200. The redefinition has brought many more women into the full-blown AIDS category.)
Added to all that is the anxiety caused by the traditional caretaking role assigned to women. “You’re not jut doing the medical with women,” says Faccioli. “You’re also helping them plan where their kids are going to go.” Adds Janovic, “Women are traditionally the caregivers, so they have to deal with giving to the family as well as giving to themselves. We need to provide respite for these AIDS mothers, to help them find care for their children so they can rest.”
The inability to be the energetic mothers they once were coupled with fears for their children’s future creates a stress that takes a deadly toll on the T-cells that keep people alive. “Stress is one of the biggest factors in decreasing T-cell count,” explains Morgan. “When you first find out (you’re HIV-positive), your body goes into shock. That stress loaded with everyday stress is what breaks down T-cells.”
Having children often keeps women from going public with their disease. They don’t want their youngsters to have to face the all-too-real discrimination of having a mother with AIDS. Cathy Robinson knows that discrimination firsthand. “People don’t believe my kids are negative,” she says. “They don’t have daycare, because nobody will take them. My daughter, Lindsay, is ready for school. What am I going to do? What kind of treatment are they going to get? That’s the absolute biggest issue in my life.”
The fears can be great enough to keep women from getting tested. But ignoring the possible problem does irreparable harm. “Especially with this disease, what you don’t know can hurt you,” notes Janovic. “There are things you can do.”
Who should be tested? Everyone who is having or has had a sexual relationship is at risk, especially heterosexual women. Confidential testing (your name and results are kept on file but not released without your consent) is available through some private physicians and Planned Parenthood clinics in Lee and Collier counties. Anonymous testing (results are linked to an assigned number rather than your name) is available through such organizations as CARES. Both kinds of tests are offered by county health departments. In all cases, an appointment is necessary.
For those women who test positive, assistance is becoming increasingly available. Health departments offer medical care, nutritional advice and counseling and support services. Additional help, including financial assistance, is provided by such groups as CARES, the Lee County AIDS Task Force, Hope Hospice of Lee County and the Charlotte HIV/AIDS Network
But perhaps the greatest help of all is coming from the HIV-positive women themselves, who, as their numbers grow, are finding each other and sharing their burdens—and their hope.
© October 1996