Living with HIV 

The general pub

The general public in Indiana first acknowledged the virus in the mid-1980s, when a 13-year-old Kokomo resident named Ryan White was infected with a tainted blood transfusion.

Fast-forward 20 years. Educators and people living with HIV still witness the old (false) assumptions: “It can’t happen to me”; “It only affects prostitutes and drug users”; “Only gay people are at risk”; “It’s not in my backyard.”

They have also witnessed a new misconception: “With all the new drugs that are out there and the people who are living longer with the disease, why should I worry about getting it?”

But AIDS Walk programmers and participants are doing something to change these all-too-common misconceptions.

As part of this year’s walk, participants can find information at the health fair, experience live performances and memorials, and view a special exhibit by Gina Pope-King, a 26-year-old photographer and Indianapolis resident who spent the last year chronicling Hoosiers who have been infected or affected by HIV and AIDS.

Pope-King’s project, Living Positively, featuring 15 framed images of people living with HIV/AIDS, along with a continuous looping audiotape of 20 people she interviewed, will make up a multimedia exhibit to be displayed in the mausoleum.

“I hope the photographs reach out to people and help them realize that anyone can get HIV and those that are HIV-positive deserve our respect and compassion,” Pope-King said.

She decided to include the element of audio because “their stories are important and unique. I believed that their words would paint a more complete picture and aid in fighting the stigma that surrounds the disease.”

The project combines Pope-King’s experience as an AIDS educator, which began when she was a student at North Central High School in the mid-1990s, and her love of photography, which she discovered at Purdue University.

She graduated with her psychology degree in 2001, but after teaching for a year in Paris, she moved back to Lafayette to further her photography studies.

Though she didn’t realize it at the time, by choosing in August 2004 to do her senior photography project about Hoosiers living with HIV/AIDS and AIDS educators in Indiana, called Living Positively, her life would be altered forever.

“AIDS has always been an important subject for me,” Pope-King said. “[But] after photographing 15-plus people,” it got personal, she said. “Getting to know them and their lives and details of their stories, I consider them my friends now. You can be passionate about something, but once it affects someone you care about,” it takes on added significance.

She is currently a board member of an organization that focuses on providing HIV/AIDS services, training, education and prevention, STEP-UP. Pope-King has recently moved to Indianapolis in order to further her involvement with the AIDS awareness community.

NUVO recently spoke with four of Pope-King’s subjects about what has and hasn’t changed in attitudes towards AIDS in Indiana, how having HIV affects their everyday lives and what can be done to stop the spread of HIV/AIDS in our own backyard. These are their stories.

Becky Conley

Age: 38
Relationship status: divorced with three daughters (all born pre-infection)
Year diagnosed: March 19, 1996
City: Muncie
Former cities of residence:
Yorktown, Ind.; Baltimore, Md.
Most recent occupations: electrician’s helper; food industry
Education:
associate’s degree in computer programming
Hobbies/Interests:
reading, two cats, gardening, interior design, swimming

Becky Conley, a self-professed big-mouth red-head who likes to talk, doesn’t fit the stereotypical image of someone who is HIV-positive. She “just happened to fall in love with the wrong man.”

“I was one of those people who stereotyped it and thought it would never happen to me,” Conley said. After their two-year relationship ended, the man went to Chicago. Conley hasn’t heard from him since.

When she first found out, it was an “emotional roller coaster.” But in recent years, Conley decided to face her HIV status.

“Once I got my head out of the sand,” Conley said, “I thought, ‘Hey, I could make a difference.’ You know, something in my life I’ve done that can help someone else think twice before they take that step. I want to be a voice.”

Conley sits on the Consumer Advisory Board, a group of people living with HIV and AIDS who meet with the Indiana State Department of Health once a month to discuss issues that relate to people living with HIV and AIDS in Indiana. Conley also handles a caseload of 116 Muncie-area clients who have HIV and AIDS.

Her duties include giving rides to doctors visits and fielding questions. She said that with the exception of “30 to 40 women … most of my clients are gay white men.” But at the same time, she said that the numbers who have come out as HIV-positive in Muncie are misleading, noting “a statistical rise in young black women,” and another demographic most people wouldn’t automatically think of, “the older generation.” Conley also said she heard about two Muncie-area high school students who were recently diagnosed with HIV.

That news furthered her wish to have AIDS awareness taught in schools. To do her part, she speaks to health classes at Ball State University. It’s “within our schools, within our churches, it’s everywhere,” she said.

Conley said she sees a need to educate fellow Hoosiers about the disease because of what she calls a “hillbilly state of mind,” meaning that many people she has met in Indiana point fingers without accepting responsibility.

“My grandmother always told me if you point one finger you have four fingers pointing back at yourself,” Conley said.

Conley’s biggest hope would be “that people would quit stereotyping and learn, like the Bible says, to love your neighbor, have compassion in your heart and understanding.”

As someone who deals with HIV on a daily basis, she also wants people to understand their risk of getting infected by being an example that anyone can become infected. On the other hand, she explains to people that just being in a room with her won’t infect them.

“I don’t want to be treated any differently than a cancer patient or someone who is just sick,” she said. “If you cut me I’m going to bleed red just like everyone else. I still have a heart and my feelings are real. I’m just like they are, except that I’m sick. That’s what I want the public to realize.”

Ronald Cushenberry

Age: 63
Relationship Status:
single
Year diagnosed: 1995
City:
Indianapolis (downtown)
Former cities of residence: Washington, D.C.; New York City; and Oakland, Calif.
Occupation:
part-time for a non-profit organization assisting low-income people who are interested in starting their own businesses
Organizations: State Department of Health division of HIV Consumer Advisory Board
Education: three years of college, hopes to get degree from Marion College
Hobbies/Interests:
theater, fine arts, classical music concerts, dancing, sings in community choruses

Ronald Cushenberry quips that he got AIDS from “sex, drugs and rock ’n’ roll.” Cushenberry was exposed to the effects of the virus long before he contracted it 10 years ago. When he moved to New York in the 1980s to pursue a career in “black theater management,” he walked by the house of a friend he had lost touch with. What he found was the friend’s wake.

At the time, Cushenberry quickly learned that HIV/AIDS was not a gay disease. As a member of the black community, he saw the effect it had on all black people — men and women, gay and straight.

Cushenberry later became the chair of the Volunteer Service Committee of Harlem’s Minority Task Force on AIDS. He was also on staff for the Gay Men’s Health Crisis in New York, where he said he “acted as a buffer” between gay white males and his caseload of black and Puerto Rican clients.

As someone who is now living with AIDS and back in Indiana, Cushenberry has a new set of challenges in his activism when he meets with the Department of Health at monthly meetings. His goal is to help address the ever-growing numbers of black women who are getting infected.

Cushenberry said that black women as a whole are afraid to seek out the knowledge and information because of the stigma that it’s a gay disease. He added that the black community could do more to spread AIDS awareness, especially in Indiana.

“I’ve seen a greater activity in the black community, but not what I would like it to be, considering how at risk black women are,” he said. “I don’t see a focus on them. Black women are 9 percent of the state population and something like 35 percent of newly infected cases. Even though I see some activity, it’s just not enough.”

Cushenberry said he has even suggested black women for Gina Pope-King’s photography project, but due to fear or other concerns, they have so far refused to be photographed.

“Because black women are caretakers — all women are caretakers — they have kids and a whole range of problems that we men do not have,” Cushenberry added.

Pope-King said that some women have agreed to sign a book or to be interviewed for her project, but she hopes to have more women for subjects to increase the diversity.

Overall, compared to other places he has lived, Indiana isn’t much different in terms of available health care and the attitudes of the general public.

But in terms of what he called the psychological climate, “It certainly isn’t as nice as Oakland, [Calif.], which has a high black population, or Washington, D.C., or New York. I don’t think it would be as difficult for some of the [black] women who are infected to come out in [those cities].”

Casey Brouhard

Age: 28
Relationship status:
married, with daughter from previous relationship (daughter born before he contracted HIV, wife negative)
Year diagnosed:
January 2002
City:
Lafayette (native city)
Former places of residence:
Indianapolis, Bloomington, Florida
Most recent occupation:
hotel industry
Education:
some college, Purdue (hotel management)
Organization: Consumer Advisory Board, Tippecanoe County
Hobbies/Interests: music (Lafayette band The Upstrokes)

Casey Brouhard, “a skinny white guy” living in Indianapolis a few years ago, thought he was going to die. “I asked the doctor to test me for everything.” The good news: His swollen lymph nodes were mono, not cancer. The bad news: He was HIV-positive.

Because of the state of his health at the time of his diagnosis, he was just happy to be alive. He compared the feeling to a scene in Fight Club when Brad Pitt’s character acts like he’s going to kill a guy. When the would-be victim gets away with his life, Pitt’s character tells Edward Norton’s character that when the victim wakes up tomorrow, that’s going to be the best breakfast of his life because he’s alive.

While Brouhard continues to have some health concerns — low-grade fever, diarrhea, fatigue — he doesn’t take the medicine because he can’t afford it. He said that if it’s a choice between eating and medicine, eating wins. He added that the medication loses its effectiveness if not taken at regular intervals and that he doesn’t want to take that risk.

But even with occasional fatigue, Brouhard carries the torch of an activist.

“I’m trying as hard as I can to put my face to it, at least around here,” Brouhard said. He wants people to see him and “think this guy looks like my brother, my friend, my kid, someone I knew. I bring it into their backyard ... They think, ‘Hey, if Casey’s got it …’ I think I’ve changed how people feel about it.”

Brouhard wants to educate all people in Indiana, whether in a bigger city like Indianapolis or a college town like Lafayette.

“Usually when you have that moment in time, when something invokes change, the place where it happened becomes the epicenter for that movement,” Brouhard said. “Ryan White is the name of HIV and AIDS in this country. I’m like 30 miles from where he lived and this is one of the most retarded areas and almost the complete opposite of what you usually see happening in history.”

In order to help people with HIV on a grand scale, Brouhard suggests more funding for health care, especially for other people without insurance like him; lower costs of prescription medications thanks to the pharmaceutical companies; and more focus on the internal issue of HIV/AIDS by the federal government.

While Brouhard is not against aiding people with AIDS in Africa, he said that “We stand a better chance fixing some of these issues here. In the long run, it will make us more capable of helping people around us. It’s definitely a double-edged sword.”

Brouhard’s ultimate solution: responsible action by individuals. He acknowledged that the spread of HIV is 100 percent preventable.

“It’s not like in the 1980s when there was infected blood supply,” he said. “The only way you get HIV is from unprotected sex or sharing needles. Barring rape, sex is an action you decide to do. By sharing intravenous needles, you’re making a conscious choice.

“We could all decide today, ‘Hey, I’m going to take the right actions,’ and it could just stop,” he said. “When we die, that would be the end of the disease. But in the real world it’s not like that.”

Holly (last name withheld)

Age: 35
Relationship status:
married, 6-year-old daughter (husband and daughter negative)
Diagnosed:
summer 1987
City: Indianapolis (Eastside, native city)
Most recent occupation: preschool teacher
Education level:
high school graduate, childhood development classes
Hobbies/Interests:
karate, spending time with daughter, being a mother and wife

When Holly was still in high school, she donated blood with the rest of her class. That summer, the blood bank called her to come in for an HIV test. She soon found out she was HIV-positive.

Her first thoughts were that she would never lead the normal life she dreamed of, including marriage and children. If someone from 2005 could speak to Holly in 1987, the younger Holly might not believe that not only would she get married, but at 35 she would have a 6-year-old daughter who is HIV-negative.

“Once I had her,” Holly said, “I got more hopeful and I now take care of myself better. I feel that I’m going to be OK, to be alive to at least watch her graduate high school, hopefully college.”

While there is still no known cure, groundbreaking drugs are being tested every day, making it possible for Holly — who has insurance — to have the hope she didn’t have almost 20 years ago. But many treatments aren’t as simple as taking an aspirin for a headache.

“For a while I was taking about 17 pills,” Holly said. “Some of them you have to take with food, some of them you have to take on an empty stomach, one had to be refrigerated. That was a constant daily reminder.”

Holly recently took a drug holiday, taking a year off of the meds — and relief from the side effects. One side effect caused her to appear pregnant even though she wasn’t. Holly’s medication affected fat distribution. “My legs are very thin with a lot of muscle and I don’t have a butt,” she explained. “But [the fat] all went to my stomach. Almost every day I get asked when my baby is due.”

She went back on the medications when her T-cell counts got low. Now she takes three pills a day. “I exercise a lot but I still haven’t lost my tummy,” she said. “That’s the most depressing part.”

It is especially difficult for Holly because many people she knows are unaware of her HIV status. However, she has spoken to student groups and hopes to get more involved in AIDS awareness.

“God has put me through enough my whole life,” Holly said. “I was adopted, my parents divorced, I found my real mom who didn’t want anything to do with me, then I got diagnosed with HIV. But it’s made me stronger. I figure because I’m so healthy, I owe it to people. I feel God has kept me around for a reason. I feel it is to educate people and to make a difference in this world.”

Holly hopes to continue combating the stigmas of living with HIV, including that of a former co-worker who told Holly, “The idea of HIV still gives people the willies.”

“I want to be a poster child for this,” Holly said. “I want to do whatever I can to change this stigma. I want people to be aware and unafraid and see that people like me get it. It’s not just prostitutes, it’s not just users. I’m middle class, my husband’s a chemist, I have a normal family.”

Rebecca Berfanger, 26, has reporting experience on a variety of topics in Boston, Chicago and Washington. After she received her master’s degree in magazine journalism from Northwestern in March 2005, Berfanger returned to her hometown of Indianapolis where she is currently based as a freelance reporter. You can find links to other articles Berfanger has written on her blog, http://rebeccaberfanger.blogspot.com. You can contact her at r.berfanger@gmail.com.

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