Man tells his story of living with AIDS for World AIDS Day

By STEPHANIE PORTER-NICHOLS/Staff

For one middle-aged Marion man, whom doctors sent home to die in the mid-1990s, AIDS could define his life. For two decades, the socially stigmatizing disease has reached into most every corner of his existence, affecting work, family, friendships, faith and even his willingness to disclose its presence to more than a select few people. Yet, with a dogged stubbornness, he’s determined that light and hope will triumph, and he’s asking the community to help him and others who have AIDS.
A few weeks ago Steve (not his real name) stopped by the newspaper office to check in. In the weeks since our interview, he’d had a medical crisis. On the relatively mild day, he wore a jacket and donned gloves noting that he was always cold. As he walked out the door, he reiterated a message of light and hope.
Just over a week ago, Steve called to check on the article’s progress. He’d again just been released from the hospital. His voice trembled with weakness. Remember the candle, he emphasized at the call’s conclusion.
Though like many people suffering from chronic illnesses, Steve can be petulant and self-focused, his story always returns to positive themes through a tenacious will that is, at times, visible in his eyes when he tells of occasions when fear, pain and unkindness could have triumphed.
The power of medicine
According to Steve, his life with HIV/AIDS likely began in 1983 when a bleeding ulcer led to a blood transfusion in California, but the decade’s end would approach before he knew anything was wrong. On the day before his birthday, he went in for a blood test required for his work. “I never imagined anything was wrong,” he said. The next day he got the phone call. He’d tested positive for HIV. Shock, he said, was his first reaction. “Then, I thought it was a death notice,” he said.
Quickly, he was assured it was not.
Steve said he called a friend who was a doctor. He immediately saw him and redid the blood work. “I’ll never forget his first words: ‘Steve, it’s not a death sentence.” 
Despite fast medical intervention, Steve said, within six months he had full-blown AIDS. HIV (Human Immunodeficiency Virus) causes AIDS (Acquired Immune Deficiency Syndrome) by killing or damaging the body’s immune-system cells.
Steve gives partial credit for his longevity with AIDS to aggressive treatments as new drugs are developed. “I’ve tried every new medicine,” he said, but noted regretfully that’s he is unable to take many of them for their powerful side effects. Some of the side effects, like migraines, he’s tried to endure.
At times, he’s felt medication schedules ruled his life. At one point, he was taking 20 to 30 pills a day. Now in the single digits, his medicine regimen is more manageable, but requires careful time management. “It’s a simple sacrifice to keep you alive,” he said.
Dr. Gail Stanley, an infectious disease specialist in Bristol whom Steve authorized to speak about his case for this article, noted Steve hasn’t always been compliant about his medications, especially when he didn’t like the side effects or was feeling good. Yet, she said, she’s appreciated his blunt honesty about medication and other aspects of his life and health care. With an affectionate laugh, she said, “That personality, the irascible ones that you’d like to choke, they often do best.”
Part of it may be their ability to handle stress, but in reality, the doctor, who has been treating HIV/AIDS since 1983, said, “We don’t know why or how it works but it does.”
Finding the answer, Stanley said, to how Steve has survived for more than 20 years could help get answers to fighting this disease, she said. If researchers could find a way to mimic what’s happened in his body, it could be a key, she said. “There’s gotta be something genetic,” the doctor said.
“He is different. He is the true exception to the general rule,” Stanley said as way of explanation and as a caution to anyone who believe the disease is easier to beat now.
With his recent and ongoing medical crises, Stanley is also blunt. “There comes a point when you can’t cheat it.” To his life expectancy, she said, he has “lots less life before him than when he started.” Yet, she’s witnessed him rally through incredible circumstances. “You don’t tell God the timetable,” she declared. 
Stanley noted Steve is now motivated and on board with his medication regimen and the virus is still responsive to drugs.
Steve gives credit for his access to powerful antivirals to the Ryan White Foundation and the Mount Rogers Health Department, which help him receive the otherwise unaffordable drugs. “Without them I would not be able to survive.”
AIDS, he explained, forced his retirement and access to workplace health insurance in 1989.
Dr. Sam Vernon, his primary care physician, and Dr. Stanley also receive Steve’s gratitude for their compassionate care and Stanley’s work to stay on the forefront of treatments.
The power of faith
As grateful as Steve is for his health care and ongoing research into AIDS, he is far more effusive when he talks about faith’s role in his well being.
“I would be dead if it wasn’t for prayer…. There’s no doubt in my mind,” he said.
A longtime member of a local church, Steve urges anyone confronting AIDS to seek out a church or to request placement on a church prayer list.
He recalled a time in the mid-1990s when Hospice was called in to handle his care for his remaining weeks. His parents were encouraged to make funeral arrangements. Lesions on his brain caused dementia to set in. Other body functions were failing. Steve couldn’t walk, even to the bathroom, on his own.
Dr. Stanley, who began caring for Steve in 1995, said he’d been sent home to die.
When she first saw him, Steve’s brain was inflamed from a parasitic infection. “I’d never seen a brain that looked so bad,” she said comparing its appearance to Swiss Cheese. Stanley said she took images of his brain to ETSU where her colleagues all shook their heads and said “too bad.”
Though she was admittedly pessimistic about his fate, Stanley said, “I thought what do I have to lose.” She began aggressively treating him, but she also put him in hospice care.
Stanley explained that hospice care, which is for end-of-life patients, is only covered for six months. At five months, she said, hospice workers called and said, “He’s still alive.”
She said Steve began imagining living and talking of places he wanted to visit.
“Nobody ever thought he’d survive,” she said of the man she now calls a good friend.
Yet, in a matter of months, he was back on his feet and weighing a healthy 160 pounds. He went to his nephews’ ball games and focused on living.
“I try to keep a positive attitude,” Steve declared. Actually, he said, friends say his emphasis on staying positive more closely resembles preaching. He stresses focusing on the activities of life and spoke of the joy of attending a nephew’s wedding.
Steve believes in sharing his love of life with other people. “I try to be positive no matter where I go…. The simplest thing you can give people is a smile,” he said.
“Find inner peace within and try to express that outward,” he advised.
Though people haven’t always been kind to him, Steve said he strives to treat everyone well. “My whole outlook has changed. I try to look for the positive in anyone and everybody.” To achieve that goal, he returns to his faith. “Prayer is the key factor,” he said.
The human factor
Though attitudes have improved, Steve is still unwilling to reveal his condition to everyone. From the beginning, he said, his primary worry has been the disease’s stigma negatively affecting his family.
Initially, he couldn’t bring himself to tell them. When he came home for Christmas a few months after his diagnosis, he observed his grandmother and wondered about repercussions. He also wondered if it would be his last Christmas. 
Eventually, he did tell them. They too experienced shock and the gamut of emotions that come with such news, but ultimately, he said, they were and are his biggest support system. Not long ago, he and his sister were having lunch in Wytheville when he was hit by an unexpected crisis. His sister drove him frantically to Smyth County Community Hospital.
As mothers will do, he said, “My mother still worries.”
Not all families react similarly. Steve said he’s known several friends with AIDS who have been disowned, their families saying, “You’re dead to me.”
Other people have failed him. Steve called a Harvest Dinner in Atkins one of his worst moments. He approached one of his oldest friends from childhood to hug her. She pushed him away.
“That’s something you remember,” he said.
He acknowledged, “It’s little things like hugging I miss.”
HIV is transmitted through the exchange of bodily fluids, such as blood, semen and vaginal fluids, Steve said. “Hugging someone doesn’t include any of those.”
He shared another experience when he went into a tanning salon. He recalled a person who knew him saying, “If you’re a customer here, then I’m not one.”
“It’s the little things like that. They hurt so bad,” Steve admitted.
Though the stigma is easing, it’s still present. Steve told of a friend who died of AIDS 20 years ago, and his family still tells everyone he died of cancer.
Steve has come to know a number of people with AIDS. “The saddest part of it,” he said, “is seeing friends pass away, letting people go.”
Steve moves ahead directing his attention to his beloved companion pet and his family. “I just go on. I try never to let it be the main focus of my life.”
The community
“My main concern is kids,” said Steve, who is worried about the continued spread of HIV. His advice to young people and others is blunt. “You can’t look at someone and know if they’re infected. If you sleep with someone, wear a condom.”
Steve is right to be troubled.
Virginia Department of Health officials estimate that more than 1,000 new HIV infections occur each year in the state. VDH statistics indicate about 21,000 individuals are known to be living with HIV/AIDS. “Estimates suggest that about 5,500 Virginians do not know that they are infected with HIV,” the agency says.
In the commonwealth, diagnosed HIV/AIDS cases decreased from 1,574 in 1997 to 1,062 in 2007. “However,” the VDH reports, “the number of people living with HIV/AIDS has been steadily increasing from 6,730 in 1997 to about 21,000 in 2008.”
In Southwest Virginia, the numbers of diagnosed cases are relatively small. In Smyth County, the VDH lists eight people living with AIDS and 18 living with HIV. In Wythe County, 10 people are reported to have AIDS and nine are infected by HIV. In Washington County, 26 individuals have AIDS, while 12 are living with HIV.
To anyone who receives the diagnosis or is living with HIV/AIDS, Steve encourages them to tell people they truly trust.
He also repeats those first reassuring words he heard. “It’s not an automatic death sentence. You make your life.”
“Get as much information as you can…. You have to rely on yourself to make big decisions. And, stay positive,” he advised.
Stanley, who is treating about 100 HIV/AIDS patients, also encourages those infected with the virus to make their own decisions. She said she tells all of her patients that she serves as the radar for their health, they must be the captains. She appreciates Steve’s ability to do that. “He’s gut honest…. He’s a man with his own mind,” she declared.
Stanley saw her first AIDS case in 1983, when it was a brand new disease and she was working an infectious disease fellowship. When she arrived in Bristol later that same decade, she said everyone was still confused by the virus and how it worked.
She remembered nurses were afraid of the patient then, now, she said, “we don’t bat an eye.”
She calls the research and treatment progress in the ensuring years incredible, especially when she speaks of the number of medication regimens available.
Stanley too worries about people not recognizing the disease’s still deadly nature. Early on in public awareness, she said, knowing someone who died was the key motivator that stopped risky behavior. Recognizing the statement’s irony, now, she said, “People don’t have the same reason to change behaviors.”
It’s like seatbelts with teens, she said, “they may have all the knowledge but it doesn’t sink in.”
On Dec. 1, World AIDS Day, Steve wants to send a positive message about and to those living with the disease. He asks the community to help him by showing their support even if they don’t know anyone affected by AIDS. “I associate light with hope,” he said, so on Dec. 1, next Tuesday, he’s asking people to put a lit candle in a window.
“You don’t know who you could be helping, a child, a friend, a loved one.”
He believes he’ll be bolstered by the show of community support when he drives around his Marion neighborhood.
“Remember,” he challenged, “light and hope.”

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