[Episcopal News Service – Clarksville, Tennessee] Happily engaged in 1999, Sheryl Brown was busy planning her wedding when she got sick. At first she thought it was nothing, a stress-related illness triggered by the rigors of wedding planning.
But when Brown sought treatment at a Florida hospital, the doctor asked if she’d like to take an HIV test. She obliged, and a positive result changed her life.
“How much time do I have to live?” was the first question Brown, now 48, asked.
In 2008, at the urging of her eldest daughter, Brown moved to Clarksville, Tennessee, a conservative community of 142,519 people, 40 miles northwest of Nashville just south of the Kentucky state line.
Before she moved, however, she investigated services, which she found through Nashville CARES, a nonprofit, community-based service organization that provides education, advocacy and support services to people affected by HIV and AIDS.
At the time of Brown’s move, Nashville CARES didn’t have a Clarksville office.
In 2009, volunteers from Trinity Episcopal Parish in downtown Clarksville began delivering food bags to between 40 and 50 people infected with HIV and AIDS, clients of Nashville CARES.
A year-and a-half later, Trinity began hosting monthly support meetings. In 2012, when office space became available, the parish decided to offer it to Nashville CARES and its rural case manager, Jim Johnson, who uses it as his base of operations on Wednesdays and Fridays.
The seat of Montgomery County, Clarksville is home to military men and women and their families stationed at Fort Campbell, which hosts the 101st Airborne, the Army’s only air-assault division. Clarksville also serves a large veteran population.
In Montgomery County, an estimated 300 people have tested positive for HIV, the virus that causes AIDS. The virus is commonly spread through sexual contact; via contaminated needles and syringes shared by drug abusers; infected blood or blood products; and from infected women to their babies, either at birth or through breast-feeding.
Nashville CARES, or Community AIDS Resources Education and Services, historically has offered services to AIDS and HIV-positive clients in surrounding counties; however, the Clarksville partnership established a permanent office at Trinity to provide closer to home free HIV testing, counseling, support groups, education and outreach, and to help clients find and apply for health care and financial assistance.
Having a space where clients can drop in at their convenience to receive services or simply talk, and a safe environment for them to meet others in the HIV community, is important, said Johnson, adding that confidentiality is sometimes a concern with clients who’d prefer not to have home visits. And, on a practical note, it’s easier to serve the 80 plus clients from a single location, he said.
Also, “Having a space at a church helps de-stigmatize HIV and shows that there are people that care. It helps community awareness and involvement,” he said.
The decision, however, wasn’t taken lightly in a Bible Belt city with 71 churches, the majority Baptist, within the city limits. Trinity stands alone as the single Episcopal church.
It’s still not uncommon for gay and lesbian people to live in the shadows in Clarksville, where an HIV-positive diagnosis is still primarily associated with homosexuality; and churches can be a place of gossip, said Kendall Welsh, Trinity’s Nashville CARES volunteer coordinator.
“They [CARES clients] are worried about being in a church, worried about being judged,” she said.
It’s a mindset toward people affected by HIV and AIDS that Trinity and some Nashville CARES clients who volunteer to share their stories in local churches, civic organizations and schools are working to change.
To do her part, Brown became a “first person,” or a member of Nashville CARES HIV-positive speakers bureau, sharing her story with community groups and congregations, occasionally being shunned for it.
“People say they are Christian until they find out someone is [HIV-]positive,” she said, adding she’s had people shake her hand only to turn away and then wipe their hand on their clothes.
She shrugs it off. “I was that person. Not knowing information is what keeps people afraid,” she said, adding she knows there are still uneducated people out there. “I’m breaking down the stigma.”
Renaldo Santiago Vasquez, 42, also has been shunned by the community.
Santiago moved to the United States from Puerto Rico in the 1990s, first living in Pennsylvania and eventually settling in Clarksville to be near a cousin. He first worked as a janitor at a Pentecostal church, where he met his wife of 11 years, Diana Santiago, who at the time was a prekindergarten teacher.
When they find out that you have HIV, they stay away, said Santiago.
Santiago was diagnosed HIV-positive in 1988. More recently, in May 2010, he received a stage 4 cancer diagnosis, a diagnosis complicated by Hepatitis C and his positive status. “I am here by the mercy of God,” he said.
“If he’d just had cancer, people would have rallied around him,” his wife said. “We still know people who think you can get it by touching.”
What she’d like people to understand, Diana Santiago said, “is that you can’t get it by touching someone or drinking out of the same glass. Don’t be afraid to show compassion.
“We are thankful we have this place [Trinity], that somebody around Clarksville cares,” she said, adding that there is a spiritual aspect to healing as well. “You get more sick when you feel like people don’t care about you.”
Trinity Parish has between 300 and 350 members and an average Sunday attendance of about 175, said the Rev. Dorothy Hartzog, the parish’s associate rector.
What began with Christmas baskets has grown into an offering of space. “Every time we’ve had an opportunity to expand help, raise more awareness, we haven’t had to sell this ministry,” she said. “Our congregation has a real variety of folks, families and a fairly large gay and lesbian [population].”
Transformation comes when a person helps to meet the needs of another of God’s children, said Hertzog.
“They do a lot for us, help us with our bills when we need it,” said Renaldo Santiago. “We have a gas card and receive food bags … and I like the support groups. At least we have a place to come and be us.”
“When I found out, I didn’t want to know anything. I was scared,” said Santiago. Now sober for 17 years, he contracted the virus by sharing a contaminated needle with his father, an intravenous drug user. “I thought I would die in a couple of months.
“When I saw I was going to live, I started treatment.”
Given the advances in medication and successful treatment, coverage of HIV and AIDS has dropped from the headlines, leading to an increase of unprotected sex, especially among young people.
“Fifteen years ago it was a funeral every day for me,” said Johnson, whose partner, the Rev. Geoffrey Butcher, is the priest-in-charge of Trinity Episcopal Church in Russellville, Kentucky, 30 miles from Clarksville. “Now it’s like almost getting diagnosed with diabetes, except you can still eat chocolate.”
In Tennessee, there are 25,599 registered cases of people infected with HIV, 57 percent of them African American, according to the state’s Department of Health. Nationwide, the Center for Disease Control and Prevention puts the number of HIV cases at 1.1 million.
Fifty percent of Johnson’s new clients are under the age of 25, which mirrors the national trend for new infection rates.
Lizette Green-Medina, 33, received an HIV-positive diagnosis in October 1996 when she was 16 years old and pregnant with her first child. The diagnosis came after Green-Medina insisted on taking a test because in May of that same year, she’d tested negative.
“He [the doctor] asked if I was cheating, asked if my partner was cheating, if I was using drugs. I struggled to get the test,” she said, adding that she didn’t fit the demographic. “Hispanic, heterosexual teenager, I didn’t fall into the white gay man category, obviously.
“Fifteen days later, I got the call, I put on my ‘medalla’ and rosary, I’m a good Catholic, and hiked up there,” she said. “I already knew what was happening. It was the family physician I’d been seeing for years, he came in and nodded his head yes, and at that moment all I could think of was my baby.”
It being the mid-1990s and Green-Medina’s case being the first HIV-positive diagnosis of a teenager in rural Skagit County, Washington, her family physician didn’t have answers to her questions; the diagnosis preceding Google meant she worked the Yellow Pages and attached herself to the wall-mounted phone, making calls to Seattle. (The experience prepared her for future advocacy work.)
Shortly thereafter she began taking six different medications, most not safe for pregnant women. When she did deliver, an AZT IV drip was required for an hour in advance of the delivery and her daughter, born during a traumatic cesarean section, had to take AZT for the first six months of her life.
“After that I decided I wasn’t going to have any more kids, and nine months later I was pregnant again,” said Green-Medina, who gave birth prematurely to a son at 33 weeks gestation. “At the time I had my daughter, it [a positive diagnosis] was basically a death sentence. I was told ‘you probably won’t see your daughter go to kindergarten.’”
At 15 years old, Green-Medina, who is of Puerto Rican descent, began a relationship with a 24-year-old man, the type of relationship typical in Hispanic communities, particularly at the time, she said. The children’s father has since died.
“He claimed he didn’t know,” she said, adding that her partner’s brother, an IV drug user, died of complications related to AIDS. Looking back, she can see her partner exhibited signs, she said. “At the time, I never got mad and didn’t mourn for myself.”
When you face mortality, however, she added, you do need to “grieve for your own life, and loss of a certain freedom and innocence.” At the time, though, the focus was on what was best for her two children, both born with a negative status.
Green-Medina’s family physician later called on her to help another teenage girl who’d been given an HIV-positive diagnosis to navigate the health care and support system; it was then that her advocacy work began. Green-Medina also is a member of CARES’ speakers bureau, offering peer and youth counseling, which is complicated by Tennessee’s strict abstinence-only education curriculum, regulated by law. If Green-Medina speaks to high school students, for instance, she can only say, “Don’t have sex.”
She is now married to a man in the Army and is the mother of four children. “I’ve never been in a situation where I haven’t told my partner,” Green-Medina said, adding that she does her best to maintain an undetectable viral load; takes her medications; and stays vigilant to the changes in her health and body. “You can only be responsible for you and your actions. Partners have a right to make a choice.”
At the outset of her diagnosis, Sheryl Brown stayed in denial. She asked “who, what, when and why?” She wasn’t a drug addict, or a prostitute; she was a woman, a mother in an eight-year monogamous relationship.
“HIV doesn’t discriminate. Anyone can get it if you don’t protect yourself,” said Brown. “HIV is not just [affecting] someone who’s living on Skid Row.”
She called off the wedding.
“He didn’t tell me; it would have allowed me to make the choice,” said Brown. “We’d been together eight years, and he was positive before we got together.”
In hindsight, she said, there were signs. He’d get sick; he’d take medication regularly. But she was in love. “When I first found out, I thought we were happy,” said Brown. “That was the most devastating thing … I’ve been hurt so bad.”
Brown suffered one serious bout of pneumonia and works to stay healthy. At the moment, the virus is undetectable in her body, though, “once you have it, you always have it,” she said.
“Stress is one of the number-one killers. Our immune systems are already depressed,” she said, adding that the T cells, the lymphocytes that fight off infectious disease, are forced to work harder.
Besides her three biological children, all of whom are grown, Brown fosters six children, all siblings, aged 5, 7, 8, 9, 10 and 13, and has received support and clothing donations from Trinity Parish.
Trinity is part of her “village,” helping to raise the kids and keeping her healthy by eliminating some stresses.
Brown isn’t dating. For now, she said, she pours her love into raising the children.
— Lynette Wilson is an editor/reporter for Episcopal News Service.