Wednesday, February 13, 2008
The two-story wood house, white with red trim, sits squarely on a corner lot in Jackson. The grass on the lawn is January brown, the same as in the other yards in the quiet city neighborhood. A locked, cast-iron security door bars the front door, which is topped with a domed, candy-cane striped awning.
At the back of the house, a long, low ramp leads to a sprawling weathered deck, and stairs twist chaotically to an upper balcony. It is a big home meant for a large, active family. Two stone angels stand by a big bare tree, stripped of its leaves in mid-season. In the wet, cold morning, the wintry wind carries the sound of eight or 10 soft wind chimes.
Inside, the warm house bustles with energy. Teresa Viramontez, Mike Nielsen and Sister Dorothy Cudinger unpack groceries. Four or five fluffy chocolate mousse pies sit stacked on the wood floor in their plastic containers beside four big hunks of frozen meat—probably beef roasts—and a scattering of vegetables, fruit and canned goods. The trio divides and sorts, tiptoeing crookedly and angling their bodies among the goods spread out on the floor, avoiding stepping on the bounty. The savory smell of bacon emanates from the kitchen in the next room, where another man hovers over the stove. A third woman stands ready to stow the food in the nearby freezer.
"Welcome, sister!" Viramontez, says, looking up. She exudes confident, relaxed energy, and seems in motion even when standing still. She greets me from across the room, her voice and smile welcoming. She gives me a warm hug, even though she's never met me before.
This is Grace House, where Viramontez juggles schedules for residents of the house, like Nielsen, and for volunteers like Cudinger, to make sure everything gets done.
'The Gay Man's Cancer'
Mike Nielsen is tall and lean, with dark, buzz-cut hair and a lantern jaw. Like nearly everyone at Grace House, he's dressed casually in jeans. He wears a gray-striped Henley, a circle of multi-colored wooden beads around his neck and wire-rimmed glasses. When he speaks, you can hear the broad vowels and lilts of the Midwestern plains.
Like all the residents of Grace House, Nielsen is living with AIDS, acquired immune deficiency syndrome. Neither he nor any of the other residents look sick, or even unhealthy, anything but. That's one of the problems with this virus: Without a test result, you cannot tell if a person is infected.
Thirty-eight-year-old Nielsen received his diagnosis almost 18 years ago, on Aug. 9, 1990. Originally from Minnesota, he was working as a volunteer with an HIV/AIDS organization when he found out he'd contracted the disease from his partner. Nielsen's partner knew he was positive, Nielsen says, but didn't let on. But he's been lucky, never having had most of the opportunistic illnesses that frequently come with the immune-suppressing syndrome; he's only had pneumonia twice.
"Back then," Nielsen says, "it was still considered the gay man's cancer. My doctor gave me six months to a year to live."
The diagnosis didn't hit Nielsen particularly hard, even though he thought he would probably die; after all, he'd been a volunteer, he knew how to deal with it. What did affect him was the loss of loved ones.
"A lot of my friends who tested positive after me are long gone. They're all dead, and I'm still here," Nielsen says.
In part, he contributes his longevity to cultivating a positive attitude, embracing instead of fighting the illness, and doing what he needs to do to stay healthy. This despite being bipolar and an alcoholic—his drink, he said, was 190 proof Everclear and grapefruit juice.
After losing a job, Nielsen attempted suicide. The experience drove him to get help for his addiction, and Nielsen's been sober since 1992. But the road hasn't been exactly smooth. Recently, he spent six months in Desoto County jail and nine months in Parchman for identity theft, his second stint behind bars. At Parchman, Nielsen did his time in Unit 28, where the prison isolates those with the virus from the general population. He arrived at Grace House last December for one mandatory year.
The walls of Grace House, a transitional housing facility for people with HIV/AIDS, exude a positive message: HIV/AIDS is a disease that you can live with. Handprints in bright primary colors, exuberant foliage, animals and numerous graphic sketches intersperse with Bible verses about love and family. "Jesus loves me," one states, simply. A plush, gray painted pussycat looks down with soft eyes from above a door frame, not a guard, but an invitation to enter.
Nielsen swears he's never going back to prison. The difference this time, he says, is Grace House.
"The love here is phenomenal," he said. Nielsen looks forward to getting a regular job and his own place. He's good with computers. He's also determined to use his experiences to help others.
"Everybody should get tested; anyone who engages in unprotected sex or uses needles is at risk," Nielsen says when asked what one thing he wants to tell people about HIV/AIDS. "Get the ignorance out of your life and learn about HIV and AIDS."
Grace House was founded in 1995, and is the oldest continually operating facility of its kind in Mississippi, one of three in the state. Here, people referred by hospitals, courts and other institutions live for three months to two years or more, stabilizing medications and learning the skills they'll need to live productive lives in the community. The facility houses 12 men and six women in two neighboring homes connected by a covered walkway and shared yard.
For some, Grace House provides a road back from illness when they're without other support. For others it is the first time in their lives they will be contributing members of society.
People with AIDS must deal not only with their illness; they also have to deal with the stigma of a disease that carries a heavy, negative baggage.
"This is still a place where we deal with cases where someone tests positive, they go home to their families for support, tell them they're HIV positive, and all of a sudden, they're on the street; they've been kicked out," said Grace House director Trey Mangum.
'Abstinence' Not Enough
Craig Thompson is nervous, placing his pad, pen and papers neatly in front of him on the conference-room table. He makes small, imperceptible changes to their position, re-straightening corners already at 90 degrees as we speak, placing and replacing his pen parallel to the edge or top of the pad.
Thompson is a soft-spoken man, but he speaks with authority about the killer virus, and although he chooses his words carefully, sometimes the words get away from him on a wave of passion. Speaking in absolutes is a bad habit, he confesses. At 59, Thompson, director of the STD/HIV Bureau of the Mississippi Department of Health, has been working with sexually transmitted diseases for the past 16 years and is co-author of the Southern AIDS Manifesto, a document outlining a strong southern response to the AIDS crisis.
One has to wonder if his white hair is the result of his job or his DNA.
"At some point," Thompson says, "because of the way the virus travels, it will infect everybody that has unprotected sex." Later he tells me that he should have added "probably" or "almost" to "everybody." But his words have a large element of truth in them: As the virus spreads to more and more people, the likelihood of catching it increases for everyone. "It's just a question of who has sex with whom," he says.
Thompson's passion—and his anger—comes to the fore when he speaks about sex education in schools. The abstinence-only approach legislated by the Bush administration has failed to protect the nation's young people from unwanted pregnancies or sexually transmitted diseases, he says flatly, and his assessment is backed up by respected, peer-reviewed journals.
"By ignoring the fact that (young people) may make a different choice, we are essentially condemning them to death by sexually transmitted infections such as HIV disease," Thompson says of the federally mandated programs.
You can't argue with abstinence programs on one level—after all, no sex, no sexually transmitted disease—but for most, the sexual urge is too primal to deny. And with only abstinence education to fall back on, young people are ignorant of how to protect themselves.
"The time to learn how to fly an airplane is not when you're on the runway about to take off," Thompson says, citing an old Red Cross public service commercial.
For people already sexually active, abstinence-only programs are virtually useless. Thompson talks about sex clubs in Mississippi, where groups of people get together for the express purpose of having sex with one another, often crossing gender lines. He's quite certain that the participants don't use condoms. He also knows that "a large number" of young women have unprotected anal sex instead of vaginal sex to avoid pregnancy.
"That particular sexual behavior places them at the second-greatest risk of (HIV) acquisition that exists," Thompson said, "the first being sharing needles used for injecting drugs."
We've known the facts about HIV transmission for almost as long as the disease has been in the public consciousness. A person with the virus cannot infect another by breathing the same air, touching, hugging or even kissing. You cannot get AIDS from tears, and mosquitoes don't carry the virus.
Transmission of the virus can occur only through a limited number of bodily fluids: blood, semen, vaginal fluid and breast milk. Therefore, there are only a limited number of ways to contract the disease: through infected blood via transfusion or intravenously by re-using syringes; an infected mother can pass the virus to her fetus and to her child through nursing. But the way most people get it is by having unprotected sex—through oral, vaginal or anal sex.
There is no such thing as 100 percent safe sex, but there is safer sex. And that means using condoms, for both men and women. Condoms are the only preventative measure proven to reduce the incidence of HIV/AIDS and other sexually transmitted diseases in sexually active people.
Twenty-six years into the pandemic, many health-care providers, police and emergency personnel in the U.S. still don't know the basic facts. Police and EMTs sometimes refuse to enter Grace House for fear they might catch the HIV virus if they cross the door's threshold.
Thompson lays the blame for this kind of ignorance about HIV/AIDS squarely on the doorstep of administrations since Ronald Reagan.
"(The Centers for Disease Control) knew exactly what to do for HIV and was prevented from doing it, and is still prevented from doing it," Thompson said.
Congress hasn't been listening to the health-care professionals about the epidemic, he said, and as a result, legislation—like abstinence-only programs—has hamstrung the very people who could make this nightmare go away. The result is 550,000 U.S. deaths.
In 2006, the CDC came out with new guidelines for health-care providers, who long complained that earlier guidelines were too burdensome. The first step is to test everyone in the course of regular screenings and checkups. Patients can opt out of getting an HIV test—just like any other type of medical test—but by testing everyone, doctors are relieved of the responsibility of deciding who is at risk and who isn't, who should get a test and who doesn't need one. The new guidelines also recommend separating testing from counseling. When managed care presses physicians to provide ever smaller amounts of time for their patients, HIV/AIDS counseling should not be something doctors need to take on.
"Mississippi began this activity in 1994," Thompson said. "The CDC has watched what we do with significant interest. It makes good public-health sense."
Surprisingly, given its poor status on so many other health markers, Thompson says that Mississippi has been on the forefront of HIV/AIDS prevention, an opinion borne out by the relatively low incidence of Mississippi's new HIV infections in the hard-hit southern states. Still, even in Mississippi, the numbers are rising: The state saw 599 new cases in 2006, and 611 new cases last year, and that doesn't begin to include all those who are infected and untested. The CDC estimates that at least a quarter of all people infected don't know they have it.
'I Pray for Wisdom'
On Aug. 23, 2005, Kathy Williams was sick and tired. She'd been awake and barely eating for almost two weeks. Thinking that jail could provide her with some food and rest, she jumped in front of a police car in the middle of the street, she says, and told the officers that there was a warrant for her arrest.
It wasn't technically true—not for the name she used that day, anyway. In her crack-addled mind, going to jail was just part of a plan to get more dope. After 16 years of addiction and living on the streets, Williams had the single-minded focus of an addict. She supported her crack habit through petty theft and by selling her body, and estimates she has some 30 arrests for soliciting and prostitution. By using a different name for every arrest, she was almost certain to get out of jail before the withdrawal symptoms hit too hard.
She surely wasn't thinking long term that August day, but authorities placed Williams in a Hinds County Drug Court program, and she went through detox and short-term rehab. She then came to Grace House, where she's lived, clean and sober, for two years.
"The Lord was with me," Williams says today of that August day, but it took quite a while before she saw it that way.
Williams, 38, walks with a pronounced limp, the result of a broken leg she didn't take care of. She ripped her cast off after two weeks so that she could go back to work. Dope sick, she couldn't get crack without working, and besides, crack would kill the pain in her leg, at least temporarily.
In 1996, prison officials told Williams that she was HIV-positive, but it made little impact on her at the time.
"When you're on dope, you don't care about that," Williams says. She did what she had to do to get drugs, her health status the farthest thing from her mind. She knows that she most likely infected the men who used her for sex, many of them married.
Williams is remorseful, but realistic. She can do little about the past.
Nationwide, African American women are the fastest growing population with new HIV/AIDS diagnoses. AIDS is the No. 2 killer of blacks worldwide, and in Mississippi, black men slightly outpace black women for new infections. African Americans, although they make up less than 13 percent of the overall U.S. population, account for half the 46,000 new infections annually. Overwhelmingly, transmission is through sexual contact, and while men usually get it from other men, women get it from men. Seventy percent of new infections in women are in black women.
"I think one of the reasons the numbers are so high is that people don't ask the right questions when they enter into relationships," says Othor Cain, Jackson radio commentator and AIDS activist. "Black men are leading these secret lives."
That secret is the "down low," where black men with wives and girlfriends also have sex with other men. It's a phenomenon often blamed for the statistical rise of HIV/AIDS in black women; men are bringing it home to their women.
The "down low" is only a small part of our seeming inability to talk straight about sex in the U.S. Sociologists prefer the phrase "men who have sex with other men," today, identifying a behavior, but not stigmatizing the men as bisexual or homosexual.
Cain believes preachers in black churches must accept significant responsibility for the HIV/AIDS status of African Americans. Those preachers, who are frequently both spiritual and secular advisers to their flocks, tell parishioners that sex outside marriage and homosexuality are sins.
Pastor Hosea Hines of the College Hill Baptist Church put the problem this way: "If a sinner steals, I'm not going to tell him how to steal better." Hines feels he can't ethically tell parishioners to protect themselves from HIV/AIDS from the pulpit when they usually spread the disease through sinful behavior, specifically, sex outside marriage and homosexual acts. Telling them to use condoms would amount to condoning sin, he says.
Still, Hines says his church does HIV testing during their frequent health fairs, just like they test for high blood pressure, cholesterol and diabetes.
"Preachers (need to) begin to deal with it from the pulpit," Cain says, adamantly, "and not from a browbeating kind of way, but more a 'this is an illness, this is a sickness' kind of way. We need to deal with it holistically and collectively instead of browbeating."
Morals, after all, don't concern the virus.
"This is one of those diseases that many people in the faith community still attribute to being punishment from God," Thompson said. "That does not help."
One way Williams can help is by talking about her life, and she talks to area students every chance she gets. She's been both a criminal and a crime victim. Once, she says, four Jackson police officers raped her under a highway overpass. She had to submit or go to jail, she says; they didn't give her another option.
Today, Williams is getting her life together. She's hoping to have surgery to correct her limp and lessen the constant pain she's in, leaving her unable to walk or stand for long and limiting her job options. Surgery is complicated, though, for AIDS patients, because of the increased risk of infection.
Still, she's looking forward to completing her GED and graduating in March, then getting a job and a place of her own. Williams has fallen in love with a minister, and they're engaged to be married, hopefully in June. She has mixed feelings about leaving Grace House, a bit afraid to move away from an environment where she's made so much progress.
"I pray for wisdom," she said.
Williams' initial reaction to Grace House, though, was denial. "I cried when I got here. I didn't want to be here. I didn't have AIDS. That was the attitude I had then."
"Get help," she said, when asked what she would say to people about HIV/AIDS. "Get out of denial and get tested."
'Put Your House in Order'
The home of Robin Webb and Duane Malone is comfortable and inviting; both the soft furniture and the lighting are conducive to conversation. Webb, 50, a concert pianist and composer, and Malone, 39, have filled their home with spiritual and religious icons from around the globe. Shiva reclines seductively on the piano, accompanied by painted iconic Russian saints; a cast of St. Francis of Assisi stands near the entry; a banner filled with Southwestern Native American icons—the trickster god Kokopelli, a turtle, a handprint with a spiral in the palm—hangs over the front window.
They've confined their two dogs, Sugar, a tan and white boxer, and Spice, a black and tan miniature pinscher, to a back room, and the pups make their displeasure known over not being the center of attention through an occasional yip or whine.
Webb and Malone have been together since November 2005. Both are HIV positive, and both work as AIDS activists in Jackson. Although they are already infected, the couple continues to take preventative measures because of the dangers of cross-infection. If they carry different strains of the virus, they can contract each other's form. Drugs effective against one strain may be ineffectual against another, and cross-infection has the potential to create a new, drug-resistant version of the disease.
Webb recalls distinctly the atmosphere when he received his diagnosis in 1988.
"I probably got it in my college years through sexual contact," Webb said. "(In New York at the time) I was around a lot of sickness and death, but even worse than that was the prolonged sickness. I was around dozens and dozens of people (who died). Death was almost always a relief … for those that had these complex set of infections."
Because of the way AIDS decimates the body's immune system, victims are prone to every kind of opportunistic infection, often causing blindness, deafness and dementia.
Getting an HIV diagnosis was difficult for Webb, and it was even harder when he got the AIDS diagnosis, almost exactly two years later. His doctor, he says, gave it to him straight: "You have AIDS. ... You need to put your house in order."
"It would have been wrong to say anything else," Webb said.
Webb partially attributes his survival to taking care of himself back then. He had a spiritual awakening, he said, that led him to alternative therapies and Eastern methodologies that boosted his devastated immune system. But the virus took its toll on Webb, and he went through a long period of depression.
"My spirit just died," he said.
Gradually, he re-evaluated everything in his life. He gave up a high-paying corporate job as a contract manager and began to concentrate on the thing he loved, his music.
Webb's attitude began to shift as the drugs began to get better in the mid-'90s. "Suddenly you find yourself living and beating the odds," he says. "The irony is that now you have to find a new life."
Webb cautiously talks about the future, now that he feels he has one. "My spiritual take on this is that it was meant to be, that I was meant to see life through the lens of having AIDS."
The virus is on his mind every day. There's no escaping it, but he deals with it.
"The virus itself hasn't changed," Webb said. "It still kills people. It's just as deadly as it was 25 years ago. If someone gets the virus today, they can just as easily die if they don't take care of it."
Malone received his diagnosis in May 1998. He says he's "99 percent sure" how and when he contracted the virus. A man he had allowed to "sleep it off" on his couch raped him during the night.
"After the rape, I was terrified," Malone said. He lived in a state of denial for two years, resigned to his own death. He had seen others lose everything because of AIDS—jobs, home, friends, family—and he didn't want to go through that himself.
In 2000, he became ill and ended up in the hospital. Thinking he would die, he called his family and told them he had AIDS. When his younger sister arrived at his bedside, she leaned over him and told him sternly, "You are not dying tonight."
With the support of his family, especially his parents, he began fighting for his life after that, regaining 50 pounds on his normally lean frame, talking about it and getting healthy. His experience demonstrated to him that "God wasn't done" with him yet, and that he had work to do. He has worked with and for AIDS organizations since that time, including Grace House, and he knows that his openness has helped others face their disease.
Webb and Malone lead fairly normal lives today with the help of pharmaceuticals. Their medications are not the same; Webb must inject himself daily, while Malone follows a strict regimen of three oral medications. Everyone experiences side effects from the meds, though, Malone said, including wasting and diarrhea. Luckily, AIDS patients have a spectrum of different drugs today, but like many medicines that have been in use for only a short time, there are bound to be undiscovered long-term implications.
Through early diagnosis, a patient can lead a relatively normal life, Thompson said, living an average of 23 years with proper care and medication. The cost, however, is $635,000 on average, over that time span, or more than $27,600 a year. At the end of 2006, 8,540 people were living with HIV/AIDS in Mississippi, with about 40 percent of those living in Hinds County. That amounts to a $5.4 billion average price tag just for pharmaceuticals, and for many, the costs of medication are double or triple the average.
Both Nielsen and Williams are on maintenance doses of different anti-viral drugs. Both have experienced side effects. Nielsen developed chronic pancreatitis, and experienced nightmares and sleepwalking from one drug, and Williams has nightmares—snakes and birds kissing, and two-headed monsters—on her current regimen. She tries not to let it get her down.
"I can deal with it," she said. "It's helping me."
"What we need here are more doctors," Malone said, and Webb agrees. A large number of physicians refuse to treat HIV patients for a variety of reasons, including moral objections, and as of 2005, half of all Mississippians living with HIV/AIDS received no treatment.
Do they live in constant fear, checking their bodies for signs and panicking at the least symptoms?
"Not any more," Webb said. "I did, though, for many years. Even a pimple on your skin, anything. I used to think that even a cold could be lethal; it would scare me. But I don't think that way any more. … The more this becomes an open conversation and is not hidden in the closet, the weaker the HIV demon is."
'I Still Miss Him Terribly'
Michael Potter loved life and everything about it. A handsome young man with long, wavy brown hair, Potter was the third of Mémé Wittmayer's six children, born in New Orleans in 1963 and moving with his parents to Jackson in 1967. His friends called him Mic.
"He was not afraid of anything," his mother says, adding that he was a real "nature boy."
Once, when he was a child, he brought home two swans.
"Honey!" his mother exclaimed when he carried them into the house under his arms.
"Mama, they were out in the middle of Northside Drive," Potter responded. His mother recalled that the swans had apparently gotten loose from somewhere in Eastover.
"Michael had to save those swans," Wittmayer says.
Another time, she came home to find a "mammoth" catfish he had caught, swimming in the bathtub. He grew crawfish in an aquarium to the size of small lobsters. He could walk through the woods identifying bird calls and nests.
Potter went to the Charity Hospital in New Orleans with bilateral pneumoncystic pneumonia in August 1992. Wittmayer knew the dangers even before she got the telephone call.
"I could tell when we were talking that he could hardly breathe. He was gasping for breath," she said. By that time, Wittmayer knew that her son was bisexual—she had known since he was a teenager—and that he lived a free-spirited, artist's bohemian lifestyle in New Orleans. She suspected he used recreational drugs, although she wasn't sure what kind. She was also aware of the dangers of HIV/AIDS.
When she spoke to his doctor, the doctor didn't tell Wittmayer that her son had AIDS, but she knew, and the doctor confirmed it. His T cell count—T cells are the white blood cells that fight infection—was 10. They are usually between 500 and 1,600 in a healthy person
"Michael was so artistic, just unbelievably artistic," Wittmayer said. "He sewed. He made jewelry. I still wear some of his jewelry. And he evidently just had more friends than the law will allow—friend friends." Potter's family and friends slept on the hospital floor while he was ill. Everyone, including the doctors, thought he would pull through. They'd seen worse, the doctors said.
Michael Potter died on Sept. 6, 1992, about a month after receiving his diagnosis, without ever leaving Charity Hospital. He was 29. One of his doctors, trained not to become emotionally involved, wept when he died.
"Michael had 10 million friends. … He had family and visitors all the time," Wittmayer says. "I can remember walking through (the infectious disease ward) and seeing, day after day, people who had no one. I swore then, anything I could do to help anyone that had no one. I knew then that I was going to take part some kind of way."
Wittmayer became one of the founders of Mississippi HeARTS Against AIDS in 1993, which raises funds for organizations dedicated to AIDS education, awareness and support. HeARTS has raised $750,000 since its inception, and has helped hundreds of people in Mississippi. She also serves on the board of directors of Grace House.
"(Michael) touched so many people," his mother says. His funeral service couldn't start for 45 minutes because of the many people crowding into the church.
"I still miss him terribly."
Today, in the U.S., HIV/AIDS sufferers have the ability to live with the virus instead of dying from it. But the world is a long way from solving the problem.
The Joint United Nations Programme on HIV/AIDS, or UNAIDS, estimates the number of active cases worldwide at an astounding 33 million, with 6,800 new infections every day. In 2007, 2.5 million people were newly infected.
Taken in the context of other deadly infectious viral diseases and modern medicine's ability to deal with them effectively, the statistics don't make sense. The CDC was instrumental in stopping the SARS virus in 2003, and containing West Nile in the American south. Polio, another deadly virus, is almost unheard of in the U.S. Clearly, the CDC knows what to do to stop a virus from spreading.
But in just over 26 years since the discovery of the virus, more than 25 million have died—more than the entire population of Texas, or nearly 10 times the population of Mississippi. The virus destroys the body's ability to fight off infection, so people die of secondary diseases like drug-resistant strains of tuberculosis and pneumonia, rare forms of cancers, fungal infections that affect the mouth and brain, and other opportunistic germs and viruses that healthy people don't give a second thought.
"How did we do this?" asked Webb. "We knew this could blow up, and it has blown up."
Given the sheer amount of knowledge, pharmaceuticals and known, effective preventive measures, the world seems only to lack the will to eradicate the disease.
"It's crazy that we should have youngsters getting infected in this day and age," Webb said.
HIV and AIDS are preventable and treatable, but there is no cure and no vaccine, and none in the foreseeable future. Vaccines seem to be especially problematic because of HIV's ability to mutate; a vaccine against one form could be completely ineffective for another.
"Clearly, not having sex is the best way to avoid transmitting HIV infection," Thompson said. "(But,) if we are going to get hold of this disease, we have to acknowledge that abstinence-only education has failed and that we need to develop more realistic approaches to teaching our children about their bodies. … And if they decide—as they seem to be doing—to have sex, that there are things you can do to minimize risk."
Toward a Better Day
"If you haven't had a blood transfusion before 1985, you've never been sexually active and never shared needles … you're pretty safe," Mangum said. Everyone else has at least some risk of infection and should get an HIV test, which is painless today, and with the rapid-results test, you'll know your status in about 20 minutes.
At Grace House, the men and women learn about the illness they will have for the rest of their lives, how to take care of themselves and minimize the risk of infecting others. Some study for their GEDs, like Williams is doing. Those who are able speak to the community about their lives. They plan for the future.
There are constant reminders that their lives, and life itself, is a gift not to be squandered. "I have come so they may have life and have it to the full," proclaims a verse from the gospel of John painted on a wall in the women's house.
When they sit outside to talk or take in the fresh air, the stone angels keep silent vigil; each of them a marker for a resident who didn't make it. And each of the wind chimes sound softly for another who took their last breath here.
"There but by the grace of God go you," they seem to say. "So learn, and live."
Thank you. Thank you Mr. Thompson. They didn't want to do anything about because they thought it wouldn't reach their world. I'm giving this to my teenage daughter to read. And as a community, our kids are still not getting the message.
Bravo. Its so hard to express what one with HIV feels or those around her/him feels because of the stigma attached to the virus. Imagine not being able to talk about something that is so intertwined with your life because of plain social fear and ignorance. I remember once, a girl I worked with sprayed her phone down with Lysol because I answered it. I wasn't positive, at the time, but she knew I was gay and automatically associated homosexuality with HIV/AIDS. I have stories for days like this. HIV is not a disease for the weak at heart, you know? Even with the wonderful advances in medications that make it manageable, its still a pain to live with. I remember when I was first diagnosed. My partner (we were dating at the time and not together as we are now) and I had gone to a Mississippi Braves game and I looked down and noticed a bruise on the back of my right foot. It didn't hurt or anything but I couldn't remember for the life of me where I got it from. Two weeks passed and it was still there - other wise I was healthy as a horse (or so I thought). I went to MEA over on Old Canton and after about 3 visits and several treatments from bruises to bacterial infections later, my doctor asked me when the last time I had an HIV test was. Hell, I couldn't remember but I sort of already knew. I was in denial. Anyway, I went to Walgreens and bought one of those mail order tests and took it back to my office. I went into the conference room with a girl that works with me - for moral support - and stuck my finger and put the blood on the blot that came with the test. I fedexed the test off and two days later called for the results. I still remember what the lady told me on the other side of the phone "Sir I'm sorry to say that you are positive." Positive. I knew at that moment everything in my life would be different. SCARY different. It went down hill from there. Kaposi Sarcoma lesions started popping up everywhere and no longer were they painless – they hurt. My MEA doc got me over to UMC to infectious disease (I hate that name but it is what it is) and I saw a doctor for the first time about MY HIV. After a tense 3 hour doctor visit where they made me feel totally OK and it was going to be alright, the doctor said jokingly “I hope you have good insurance.” At least I thought he was joking. On 7/5/2007 I took my first dose of HIV medication – that’s a story on to itself…. Anyway… after a few months everything was, well, OK. Now they are better but I still think about it everyday. Heck I have to – else I would forget to take my meds in the morning :) There have been ups and downs in since that fateful day. I have a wonderful partner who is negative – and will stay that way. I've taken roughly 2,200 pills. I've seen my CD4 or T-Cell count go from 34 to 400. I've spent $36,000.00 on medications and $18,000.00 in doctor’s visits and labs (the labs are what get you). I've seen the KS lesions fade away, with the exception of the one on my right foot - that's my battle scar :) But I'm alive and healthy today. My partner is negative and we plan to keep it that way. I know this was probably the wrong place for this but I've always wanted to tell my story, even in brief, since its like the final public affirmation. Thank you Ms. Mott for the wonderful story and the chance to post this.
Positive, thank you for your courage in sharing your story. It's is vitally important for people to understand that although AIDS is manageable, it is still, first and foremost, a killer. The cost, from all points of view, is enormous. $54,000 in six months... astounding. Talking about it, understanding it and dealing with it openly is the only way that we're going to get a handle on it. It may be embarrassing and inconvenient, but that's nothing compared to what you and thousands of other Mississippians are going through. My thoughts are with you. Lanier, teaching our young people what they need to know to not get infected from the very start is step No. 1. You go!
I just noticed something - I actually meant to say 7-5-2005. Still though, that is quite expensive. My apologies on the misprint. Also, keep in mind, that doesn't include all the other costs involved. Lifestyle changes, healthier food, gym (ugh, which I need to go to), etc. It ain't cheap :)
Great story, Ronni, and thank you, PositiveOne, for sharing your story. I read something recently that really brought the difficulty of developing an HIV vaccine into focus. It said that HIV is so mutable that that there is more diversity of HIV strains in a single person than there is in the flu virus from year to year. So even in a single person, a vaccine that is effective against some forms of HIV may not be effective against others. I thought it should be mentioned that though you can transmit HIV through oral sex, the transmission rate is very, very low. (There is some controversy over how low, but the 4th International AIDS Conference estimated the risk at .04 percent risk of transmission per contact.) I don't mean to discourage people from practicing safe(r) oral sex, but it's also important to understand HIV. It's an incredibly fragile virus compared to herpes, to say nothing of a bacteria like chlamydia, which is the third most common contagious disease in the U.S., behind the cold and the flu. Also, regarding abstinence education, it's worth nothing that Bush is in Africa touting his contributions to fighting AIDS on the continent. One-third of that money is earmarked for abstinence-only programs, however, which is absolutely disgraceful. Baptist sexual ideology should not trump the needs of millions of people at risk.
- Brian C Johnson