CHAMPAIGN — When he was younger, Mike Benner nearly lost his life to drugs, alcohol and suicide.
Now he tells his story to younger people every chance he gets, hoping they'll learn from his mistakes.
"If my story can help just one person, it's worthwhile to me," says Benner, executive director of the Greater Community AIDS Project of East Central Illinois.
At 50, Benner has a message to deliver: The face of HIV — the virus that can cause AIDS — has been changing, and it's infecting way too many young people who aren't taking caution to heart.
Nobody knows better than he does how high a price there is to pay: Benner, himself, was diagnosed HIV-positive in 2003, he says.
The drinking and drugs started in high school, when he was struggling with bipolar disorder, coming to terms with being gay and feeling isolated, he says.
"In my senior year of high school, somebody wrote 'Benner is gay' on the blackboard, and the teacher left it up there for a month," he recalls.
Asking for it to be erased would be like acknowledging there was truth in it, Benner said, so he left it alone.
"That was 1979, and I'm sure they saw nothing wrong in it whatsoever," he adds.
Benner said he was aware of HIV/AIDS cases in the early 1980s, but it wasn't until one of his closest friends died of AIDS in the early years that the possibility of HIV infection for him really hit home.
Still, he said, there was so much unknown about the infection, he only became a little more careful as time went along.
"I'd already accepted the fact that sooner or later I'd become infected," he said. "There was a basic mentality that it was inevitable, sooner or later."
Before his position with GCAP, Benner was a student at the University of Illinois, where he was majoring in classical civilization, and working for a Family Video shop.
He first came to GCAP as a volunteer after he was diagnosed with HIV.
The organization was there to help him when his life took a turn for the worse in his 40s, due to a bad relationship, a new drug in his life (cocaine) and three suicide attempts in a single year, he said.
"It was just a big snowball effect. All these things just got out of control," Benner said.
"I'd let them get out of control, more or less."
GCAP and changing HIV
Benner says GCAP's transitional housing helped him get back on his feet, directed him to mental-health counseling and other support services he needed.
But he also knows he was ready to make big changes in his life.
"Before somebody changes their behavior, they have to be ready," he says.
GCAP was founded in 1985 as the Gay Community AIDS Project, and its name was later changed to reflect the fact that HIV/AIDS affects more than the gay community.
The organization serves HIV-positive people in East Central Illinois with emergency assistance funds, access to supplemental groceries, case management and some limited transitional and long-term housing.
The organization operates on $190,000 a year, and about 70 percent of that comes from government grants.
The rest comes from private donors and fundraising, Benner says.
When he talks to teens and young adults about being more careful, Benner admits he sometimes wishes he was 20 years younger.
"Sometimes I feel awkward being a 50-year-old man trying to tell people who could be my kids," he says.
But it's so important to try because so many of them are failing to see the changing demographics of HIV infection, and putting themselves at risk, he says.
"They just don't see it as the life-threatening disease that we did," he says.
Some 50,000 people in the U.S. are infected with HIV each year, and one-fifth of all Americans living with HIV don't know it yet, according to the Centers for Disease Control and Prevention.
One-third of all new HIV cases diagnosed in Illinois are among teens and young adults ages 15-29, according to the state Department of Public Health.
Gay men, especially black men, continue to be the most affected by HIV infection, but Benner warns he's seeing changes.
Nearly one-third of GCAP clients are heterosexual women, he says. About 15 percent of GCAP clients have a child under age 18.
A hard burden
Dr. Philip Johnson, an adult medicine physician at Carle who specializes in the treatment of HIV/AIDS patients, says GCAP does good work.
He, too, talks about the face of HIV infection changing, and warns a change in behavior is needed.
"More testing, earlier treatment, that will help some," he says. "But prevention is really better than diagnosis. It's really important."
Benner says younger generations have grown up relying on HIV medications to save them if they become infected, but they're ignoring harsh realities of living with HIV.
"It's going to alter your life," he warns.
He's been fortunate to have family and friends who are tolerant of his HIV status, he says, but for many people, an HIV diagnosis means alienation from family and friends.
For many, it's still considered a "dirty disease," he says.
It still means telling every partner about your status. It can mean issues if you plan to have children and staggering medical bills.
"I mean, it's a hard burden to bear," he adds.