Despite H.I.V., Fighting to Maintain Health and a Positive Attitude
Posted by pozlife on May 27, 2008
Nicole Bengiveno/The New York Times
Frances Melendez, left, who leads the Divas, a support group for H.I.V.-positive women in Harlem, with a client, Patricia Clouden.
By SALLY SARA
Published: May 18, 2008
Patricia Clouden dresses in a whirl of color, from her bright African dress to her shiny green toenail polish. She is a grandmother of eight who gets noticed in her Harlem neighborhood and is not afraid to speak her mind.
“I’m not a ‘Yes, ma’am’ no more,” she told a group of about a dozen women seated around a boardroom table one recent afternoon. “I’m a warrior.”
Ms. Clouden was not speaking at a corporate team-building event but at a meeting of the Divas, a support group made up of African-American and Hispanic women over 50 who are H.I.V. positive. Many of these women contracted the virus from unfaithful partners, or from lacking the self-esteem to demand safe sex. The Divas, one of many support groups organized through Iris House, an AIDS service center in Harlem, is, more than anything, about rebuilding that self-esteem.
“H.I.V. saved my life,” said Ms. Clouden, who is 59 and received a diagnosis of H.I.V. after becoming ill in 2003, at the end of an abusive 20-year relationship. Her bright clothing is a kind of camouflage; her withered, blinded right eye is a permanent reminder of the violence she endured. Given her history, once she contracted H.I.V., Ms. Clouden said, “I didn’t expect I would see grandchildren.”
She and the other Divas represent the changing face of H.I.V. and AIDS: The Centers for Disease Control and Prevention reported that in 2005, 27 percent of people with AIDS were women, up from less than 5 percent two decades before, and that African-American women were 23 times more likely than white women to become infected. AIDS is the fourth-leading cause of death for black women older than 45 and Hispanic women aged 35 to 44, according to the C.D.C.; blacks and Hispanics make up 24 percent of the nation’s female population, but 82 percent of new AIDS diagnoses among women.
And the neighborhoods around Iris House have some of the highest infection rates in the country. In Harlem, 116 of every 100,000 people are H.I.V.-positive, compared with 46 per 100,000 in New York City and 18.5 in the nation.
“We like to call Central Harlem, East Harlem and the South Bronx ground zero,” said Ingrid Floyd, executive director of Iris House.
Noting that many of the clients she sees are poor and have experienced homelessness, domestic violence and drug addiction, Ms. Floyd said that low self-esteem continues to put obstacles in their path.
“They are not as empowered, not as educated as their Caucasian counterparts and hence they are being hit most with H.I.V.,” she said. “A lot of times we have clients who have gone into depression, and they isolate themselves. So, they stay in their apartments and they don’t come out, because they think they are going to die.”
Iris House, named for Iris de la Cruz, who died of AIDS in 1991 after working as an advocate for women with the disease, opened 15 years ago as one of the first women-centered AIDS groups in the nation. Financed by foundations and individuals, the organization distributes 100,000 condoms a month on neighborhood streets and provides counseling and cooking classes to people with H.I.V. and AIDS.
The Divas, one of half a dozen specialty groups that meet at Iris House, have discussions on Wednesdays about sexuality and sensuality, medication and mental health. Its members also take exercise classes and attend workshops on managing their finances. The oldest member is 76, the youngest 50. The name comes from a nickname for Frances Melendez, a psychologist who runs the group and acts the part.
Many of the Divas said that the group has helped them talk openly and honestly about sex for the first time in their lives. They not only look back on how they were infected, but also discuss expectations for future relationships.
At one recent group session, some of the women said they had been so burned by their past partners that they were now more interested in companionship than in sex.
“We need someone to hold us,” said one of the Divas, who learned that she was H.I.V. positive in 1995, a week before her companion died of AIDS, and spoke on the condition she not be named. “Sex is something we grew into and grew out of.”
Dr. Melendez gently guided the discussion, asking whether the women felt comfortable looking at themselves naked, noting that H.I.V. and age have done their damage. Some shook their heads, but one woman announced: “I love hugging myself.”
There was a pause, and then another leaned forward: “I’m a mirror person.”
Instead of nervous laughter, the women encouraged one another with a chorus of “Amen” and “Go ahead, baby.”
Dr. Melendez said that the aim of the group was to arm the women with renewed life-management skills and the strength and confidence to live beyond the initial shock and despair of the diagnosis. For some, learning of their H.I.V. status was such a shock that they have used it as a way to restart their lives.
“It is a very difficult decision to decide to live positively,” Dr. Melendez said. “It’s much easier to say ‘forget it’ and let the disease take its course.”
Kathy, 56, a plainly dressed woman with neat hair who spoke on the condition that her last name not be used, has been fighting her own battle against H.I.V. since she received the diagnosis in 1992.
“I didn’t expect to see my children or go to a wedding,” Kathy said in an interview after the group session. “They gave me a death sentence. But, 16 years later, I’m still here.”
She said she suspected that she contracted H.I.V. from her partner; she thought he was unfaithful to her, but felt it was her duty to stay with him. She attributes her longevity to vigilance about her diet and medication regimen.
But her voice still breaks and she shudders when she dares to speak of a long life ahead. “My future is very bright,” she said, her words betrayed by her tentative tone. “I’m going to see my grandchildren graduate.”
The woman who learned of her H.I.V. in 1995 said that when she told her six children about her illness, “they all hugged me and caressed me, and it has been like that ever since.”
But she is reluctant to disclose her H.I.V. status beyond her family, and sees the virus almost as a parasite that she is determined to keep under control. “I got a squatter in the corner, sitting there,” she said after the session. “I tell him he’s living in my temple and he has to do as I say to do.”
Ms. Clouden said that when she first tested positive for H.I.V., after becoming breathless while walking home up a hill five years ago, she thought to herself, “Oh, Lord, I guess I’m going to die.”
She said that she mostly stayed at home to raise her four children, but that she worked occasionally as a nurse’s aide and a hotel maid, in part for the money and in part as an escape from her violent companion. The worst of his attacks, she said, came as retribution for her walking past him without noticing that he was there.
“He beat me up, and he took his finger and stuck it in my eye and pulled my eye out,” she recalled, adding that she did not go to a hospital for fear of getting him in trouble. “I felt that I wasn’t good enough, that I was ugly. I felt that I needed somebody to love me.
“My mother already had a plot with my name on it,” she added. “So at least she would have someplace to bury me.”
Several of the Divas said that they had not disclosed their H.I.V. status to their friends and family, so the group provides a rare safe haven. “I’m hoping they don’t see the diagnosis as loneliness,” Dr. Melendez said.
Ms. Floyd said that women who were infected with H.I.V. still did not receive the same support and empathy as those diagnosed with other illnesses, like cancer.
“When a woman comes out and says she has breast cancer, everybody rallies around her,” she said. “I live for the day when someone saying they have an H.I.V. diagnosis is the same as someone saying they have breast cancer.”
For Ms. Clouden, the Divas have made it that way. “We used to cower behind our insecurities,” she said, speaking as much for herself as for the others in the group. “But, now our insecurities are cowering behind us, because we are the Divas.”