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Powers of Example: Theresa Nieves

September 1997

Theresa Nieves

"To begin with I'm a Puerto Rican Houndarana born in New York City.

I was diagnosed HIV-positive in January 1988. I was four-and-a-half months pregnant at the time. My husband Luis had been sick for some time, losing weight and experiencing HIV-related symptoms. Unfortunately, his doctor never thought to test him for HIV and my gynocologist never thought to test me. But then this was the mid 1980s and even though my husband had used drugs in the past, they were not a part of the AIDS equation until late 1987 when reports began to show the connection between HIV transmission and drug use. Our lives didn't reflect the risk criteria. I never thought that HIV/AIDS would become such a harsh reality for our family.

With Luis' health deteriorating, Theresa felt she had to find out what was wrong. She decided to take Luis to Kings County Hospital. While in the waiting room a peer educator began to talk about HIV/AIDS stressing that it was no longer a "gay disease". Now it could happen to anyone. "That day we went to an anonymous testing site. We took the test in a very naive state of mind. My husband had a history of drug abuse, but had been in recovery for several years. Three weeks later we receieved our results: Luis had AIDS, I was HIV-positive, and there was a major risk that my child could be born HIV-positive."

At the time, services for the HIV-positive people were geared primarily toward gay men. "I was very frightened. There was no support within our own community. Luis and I had a business and we had no choice but to educate our customers, our family and ourselves. I went to GMHC for help and advice. At a support group, they suggested that I leave my husband. 'After all, he gave you the virus,' they said"

Theresa realized that she had to educate herself about AIDS. "I read everything I could, and in a relatively short time became very knowledgeable about the virus and available treatments. I met Dr. Jorda n Glasser at Staten Island Hospital. Thanks to his willingness and patience, he taught us how to live with HIV/AIDS. Later that year, we decided to seek medical care at St. Clare's Hospital because it was convenient. The staff there was great. Luis went through six bouts of pneumocyctis carinii pneumonia (PCP) and survived.

"My family has always been very supportive. We called all the hotlines trying to get information. My mother would spend hours on the phone trying to get some idea of what we needed. In my own community no one knew what to do, so I had to travel to different centers to learn about the latest treatments."

Eventually Theresa and Luis gave up their store and Theresa stayed home to take care of her husband. She and Luis felt their lives were over, and felt tremendous guilt about the possibility of their child being born HIV-positive. "She was born HIV-positive, and died five months after being born from pneumonia. There was no specific treatment for children then, and the only treatment for HIV was AZT. Three-and-a-half years after my daughter died, my husband Luis died.

Theresa decided to travel to get away from her home and the painful memories it held. "I went to the Cayman Islands for a vacation, and while there, I hurt my hand very badly. At the hospital I told the nurse to take extra precautions because I was HIV-positive. There was practically no HIV knowledge or treatment available in the islands, and those infected with the virus had no place to turn."

She decided to use her knowledge and experience to start an AIDS program. "At the time, only 11 people were known to have AIDS there. Most went to Miami for treatment. I went into the prison system and taught the officers in charge how to treat AIDS patients.

"As projects unfolded, I realized I was getting real good at my job. I was one of the few Latinas out there doing advocacy work, and who was not afraid to say 'I have AIDS.'"

"I returned to the states in late 1993, feeling that if my experience with AIDS was of value in the Caymans, it would be valuable here." Theresa found a job with the Community Family Planning Council ("CFPC"). "I worked as a health educator in Bushwick, Brooklyn, and immediately got involved in the HIV care network there. Through her job at CFPC she came to the Latino Commission on AIDS in 1995. "I became an advocate and learned how to deal with groups. As projects unfolded, I realized I was getting real good at my job. I was one of the few Latinas out there doing advocacy work, and who was not afraid to say 'I have AIDS.' "

Theresa feels part of her strength is that she's very public about being HIV-positive. "I work with the community. People who are HIV-positive in my community still feel stigmatized. They need information and support. The only way to empower people is to give them knowledge.

"AIDS has broken my heart in so many ways, but it has changed my life in good ways too. I have become such a strong person. At 31, I'm a person I never thought I could become. I was married at 17 and was content to be a housewife. The home, business, and children were to be my life. AIDS has taken all that from me, but it has also helped me to find the strength to move on. I never thought I'd have a personal life again, but I've had apartner for two years. His name is Heriberto Arroyo, and he advocates for needle exchange and other harm reduction services to prevent further infection.

"AIDS has given me courage and strength not to be a victim. I'm a person with AIDS teaching others how to live with AIDS and advocating for their well-being and future. No one deserves to die in silence. I refuse to do that. I won't be silent, and I'll help all the people I can for as long as I can."

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This article was provided by Body Positive. It is a part of the publication Body Positive.
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