"This Positive Life" is an ongoing podcast series from TheBody.com in which people with HIV living around the globe share their personal stories.
In 1999, Bernard Jackson's wife passed away in the hospital weeks after being given an AIDS diagnosis. That's how Bernard learned he was HIV positive -- but he was so consumed with shock, loss and caring for his young daughter that years went by before he was able to process his own diagnosis. "[Sharing my story] was how I started building myself back up ... and seeing that what I thought was the end for me was actually a beginning," he reports today.
In 1986, when Oliver W. Martin III was diagnosed with HIV, then called GRID, he wasn't alone. His younger brother, who was also same-gender-loving, was diagnosed at the same time. But for a decade, the two of them told almost no one. Only when effective HIV treatment became available did they share their diagnoses with their large, tightly-knit family. Since that time, Oliver's dedicated himself to furthering HIV prevention and sexuality education in faith communities.
In 1993, as a 21-year old new mom, Shana Cozad could not have been less worried about HIV. "It was commonly referred to as a drug user's disease. It was commonly associated as a gay disease," she remembers; "The stigmas and the discrimination and the unsupportiveness attitudes all around the globe around this disease were peaked at an all-time crisis high." Shana herself didn't do drugs, and she had not had many sexual experiences, but she was not a fan of condoms. "I remember getting an HIV test when I was 20, pregnant with my son, and thinking, 'I don't understand why you guys are doing this to me. ... It's those other people out there who are at risk. It's in those other communities.'" Shana, a full-blooded Native American, had been adopted at birth into a highly educated family; and because giving birth had had such a profound effect on her, she planned on becoming an obstetrician/gynecologist. She went to a university with many other young mothers in the student body, and thus unknowingly began her journey with HIV/AIDS.
After being hospitalized and close to death, Marvelyn Brown found out that she was HIV positive. She was 19 at the time. But she made a choice early on to speak out and educate her community about HIV instead of being silent. Since her diagnosis, Marvelyn has written a book, won an Emmy and been featured in countless magazines and television programs, including The Oprah Winfrey Show.
"The secret to my survival is that I want to live," says HIV/AIDS advocate, mother and long-term HIV survivor Michelle Lopez. Back in 1991, Michelle left behind a partner who beat her and, she would soon learn, knowingly put her at risk for HIV. With nothing but her infant daughter, Michelle set out to find help -- and help did come, in the form of a subway ad for community health services. She sought out the agency, got her HIV diagnosis (and her daughter's) and got right into care and services. For the past 17 years she's been on staff at that very same agency, helping immigrants and women facing similar challenges to the ones she once faced. Michelle is a strong voice for her communities in the fight against HIV/AIDS -- and she's raised her daughter, Raven, to be an advocate just like her. "I love Michelle today, and I can teach other people that," Michelle says in this edition of This Positive Life. "We have got to start loving us, no matter what: HIV, gay, black, lesbian, Latino. You know, we are somebody."
"HIV was just something added on the plate that I had to learn how to deal with," says Jose Ramirez. Jose survived sexual abuse, a stint at a sadistic boarding school, visits to war-torn El Salvador and being kicked out of his father's house because he was gay -- all before his 17th birthday. At 17, he found out a much-older boyfriend had passed HIV to him.For Jose, becoming an advocate for immigrants, rape survivors and LGBT youths was his way of using his own negative experiences to empower his community. "It's stuff that happens to a lot of people, and a lot of people can't talk about it," he says. "Once you hear someone else talk about it, you're like, 'OK, I'm not alone.'" Today, Jose teaches young people how to keep their sex lives safer, healthier and, yes, sexier."
Esmeralda, 37, forges a successful new path for herself and her children, and manages to find love along the way.
Esmeralda was 25 when her husband died of AIDS, leaving her HIV positive, with one baby and another on the way.
"I never expected to be this alive at this point," Gary said to himself on his 60th birthday last year. Diagnosed with HIV in 1992, Gary has survived the tragic loss of his partner, a bout with prostate cancer and a heart condition. In this edition of This Positive Life, Gary talks candidly about his health, his family, the challenges of dating, and how he went from denial of his HIV diagnosis to being a knowledgeable HIV/AIDS advocate.
When indigenous New Zealander Marama Pala was diagnosed with HIV, she didn't have the option of telling her loved ones on her own terms. "Because we are such a tight-knit community ... news of my diagnosis spread like wildfire," she explains. In this interview, Marama talks about being an HIV/AIDS activist in her indigenous community -- as well as finding love and having children with her husband, who's also HIV-positive.
The U.S. military's "don't ask, don't tell" policy got Enrique Franco discharged from the Army. It also, oddly, was the reason he found out he was HIV positive. As Franco explains in this moving interview, diagnosis turned his life upside down, but he's now standing tall. "This is my body, this is my life," he says. "I'm not going to stop living. I refuse to put my head down."
In 1987, Sherri Lewis, who had been the singer in a popular New York City rock band and had appeared on national TV, decided to settle down and get married. But a few months before the wedding, she learned she was HIV positive. She was crushed by the test results. Her fiancé, it turned out, was HIV negative. "We were told we couldn't kiss. We were told saliva had HIV in it," Lewis recalls. "I remember telling my husband under my wedding veil, 'Don't kiss me.'" Although her fiancé stuck by her side, her life was forever changed. "I have succeeded at living with HIV, and living healthy with it," she says. "But it took a big bite out of my life. Life interrupted. Career interrupted."
Justin B. Smith may be one of the most public African Americans living with HIV: He has his own blog and Web site, and he's even on YouTube. And who can blame him? Only 29, he already has an incredible story to tell. Justin admits he used to live "a very dangerous life," but since his diagnosis three years ago, the former heavy drinker and drug user has turned his life around. In this moving, one-on-one interview, Justin walks us through some of the key moments in his life, including the day in 2006 when he was diagnosed with HIV, his experiences dealing with stigma and ignorance, and his stint in the military as an openly gay man.
"I can't say that I've fully processed my HIV diagnosis because it has affected me in different ways at different stages of my life," says Sarah, who has been living with HIV her entire life. Growing up in the 1980s in a small, conservative, religious community, Sarah faced all the burdens of being an HIV-positive kid in an ignorant world. In the latest edition of our ongoing series This Positive Life, Sarah talks candidly about how HIV took away part of her childhood, forcing her to "face stuff that is hard for grownups to deal with." Now a grown, married woman herself, Sarah hopes to one day reach out to HIV-positive children.
When Jimmy Mack discovered he was HIV positive, it was 1987, and an HIV diagnosis was essentially a death sentence. So instead of going to a doctor for treatment, he dived into a different kind of medicine: cocaine and alcohol. His journey out of addiction was difficult, but Jimmy has now been clean and sober for more than 15 years -- and he's got an undetectable viral load to boot.
As a 17-year veteran of the Chicago police department and the mother of eight children, Lois Crenshaw knows how to roll with the punches. That may be why, despite being shocked by an HIV diagnosis at the age of 55 after she'd been raped, Lois has become a leader and a role model for older women with HIV.
Since he was diagnosed in 2007, 23-year-old Ahmad has had many ups and downs. But as he explains in the latest episode of TheBody.com's This Positive Life podcast series, Ahmad feels many of those life changes have been for the better. Being gay and HIV positive is frowned upon in many Hispanic and Muslim communities, and Ahmad faces unique challenges because he's part of each. However, he's found a supportive community in San Francisco, and his diagnosis has inspired him to take better care of his health.
Joseph rides his Harley Davidson motorcycle as often as he can. Harley riders don't often discuss living with HIV, Joseph says -- though he guesses that others are infected, since he says there are some in the Harley community who use injection drugs. Diagnosed in 1995, Joseph has a supportive family and friends, and says he's currently experiencing one of the happiest times of his life. "What's funny about it is I have this disease, but I don't think about it, I don't dwell on it," he says. "I take care of myself, I do what I've got to do. ... I'm drug free, I've got my life back and I'm happy."
"By the time I got on Project Runway ... I was so comfortable being HIV positive and being open about it ... that I didn't really even think twice," says Jack Mackenroth, a former cast member of the Bravo network's fashion-design reality show. The fact that Jack has been living with HIV since 1990 is old news to Project Runway fans -- Jack was 100 percent open about his HIV status, even while living in the fishbowl of reality television. Now Jack uses his high profile -- and his design expertise -- to fight HIV stigma. Jack sat down with TheBody.com to talk about living with HIV, both on and off TV.
Damaries Cruz is an optimist. "When I was diagnosed [in 1991 -- five years before the era of effective HIV treatment truly began] I had to find a way to turn this horrible thing, this negative thing, into a positive," she recalls. "I had a choice: I could sit there and cry and let this thing eat me alive, or I could just celebrate my life and beat it. That was my choice." Cruz is now a very public advocate: She and her mom are the stars of a newly released, Spanish-language media campaign called Soy (Spanish for "I am"), which features the personal stories of a diverse group of HIV-positive Hispanic men and women, as well as the people who love them. In this article, you can read our interview with Cruz and view a video from this groundbreaking campaign.
Shelley Singer was diagnosed with HIV in 1997, she had no idea she was even at risk. Yet she had thrush and a CD4 count of just 54 -- as well as a family and an HIV-negative husband that she needed to explain all this to. Her deeply moving recollection of how she disclosed is only part of Shelley's story, however; the 49-year-old long-term HIV survivor has also become an active HIV educator and the founder a social network for HIV-positive heterosexuals.
Five years ago, at the age of 23, Kali Lindsey was numb with shock. "The day after I got my positive diagnosis, I was back at work, pretending like nothing had ever happened," he says. "I closed off from everybody." Three years passed before Kali was able to tell his family or friends about his HIV status. Today, however, Kali works to improve HIV policy in the United States as an outspoken advocate. In this one-on-one interview with TheBody.com, Kali discusses how he learned to seek the support of others and to speak out about his status. "I would definitely tell [people who are recently diagnosed] that they should spend all of their time teaching themselves how to love themselves first," he says.
How do you survive 27 years of active heroin addiction? George Burgess has been through it all and survived with a fighting, optimistic spirit. "I look at AIDS as an acronym: Always In Divine Service; Always In Divine Space," Burgess says. "I like being of service." George has been of service since his HIV diagnosis in April 1995. A father of four, George celebrates 12 years in recovery this year. For years he volunteered for Atlanta's AIDS Survival Project, before being hired as an HIV/AIDS treatment educator in 2001. He manages the largest HIV treatment resource center in the southeastern United States. He has been publicly speaking on HIV/AIDS nationally and locally for many years. And he has an incredible story to tell.
Michael McColly tested positive for HIV in 1996. Since then, he's been on a journey of discovery, trying to understand the ideal way people with HIV can lead healthy lives and how community activism and spirituality can contribute to that health and help stop the HIV epidemic. Michael traveled around the world talking with people who are positive and HIV advocates about their lives and their work. A Chicago-based HIV-positive author, teacher and yoga instructor, Michael wrote a book about his travels last year called The After-Death Room: Journey into Spiritual Activism.
Paul has been living with HIV for 27 years without ever needing to take treatment. He never thought much of it until the day a friend said to him, "You haven't been sick. ... Why do you think that you're doing so well?" Paul soon discovered he was one of the lucky few positive folks known as "long-term nonprogressors" -- people who have HIV, but whose CD4 count stays high and viral load stays low for a long time without the help of medications. In this interview with TheBody.com -- the latest in our This Positive Life podcast series (available as both audio and a transcript) -- Paul discusses his life, and explains how he's happily become a guinea pig for HIV researchers hoping to figure out what makes him tick.
An HIV/AIDS activist since his diagnosis more than 20 years ago, Nelson Vergel is also an advocate for regular exercise and good nutrition. After all these years, Nelson remains dedicated to helping people with HIV. He runs a few Web sites and discussion groups. He also has a full schedule of talks around the country. Originally from Venezuela, he has been living in Houston, Texas, almost as long as he's known he's HIV positive. Among Nelson Vergel's top tips for surviving HIV/AIDS: Stay informed and connect with others.
Imagine living with HIV for 15 years and maintaining an undetectable viral load and a CD4 count around 2,000 -- without ever taking a single HIV med. Few people are part of this very small (and very fortunate) group of HIVers -- but Loreen Willenberg is one of them. What makes her so special? Doctors aren't quite sure, but if they can figure it out, it could forever change the way we fight HIV. Loreen participates in several studies in which researchers are trying to understand what makes these so-called "elite controllers" tick. "I don't have to participate, but you know what? It's necessary," she says. "It's a personal purpose. If there's any way I can help, I'm all about that." In this intimate interview with The Body (both a podcast and a full transcript are available), Loreen tells the story of her life as a "partially positive" HIV advocate.