DAVID MILLS/THE LEDGER
Above, Glen Gary of Lakeland talks about being HIV-positive at Camp Wingmann in Avon Park, which is organized by Friends Together, an HIV/AIDS awareness and education group based in Lakeland. At right, a group of adults holds an informal discussion in the shade at the retreat, which is held four times a year for people affected and infected by AIDS to have a chance to learn about the disease and to relax. The group was founded by Cathy Robinson Pickett of Lakeland.

Published Sunday, November 9, 2003
TOGETHER IN HOPE

Families Affected by HIV/AIDS Find Strength in Camp Gathering

By Rebecca Mahoney
The Ledger
rebecca.mahoney@theledger.com

Glen Gary sat in a doctor's office, waiting for the results of his HIV test. It was 1985. The AIDS virus was running unchecked through the gay community. People lived in fear of the disease and of those who had it. There was little support for victims, and many doctors and nurses looked at an HIV-positive diagnosis as a death sentence.

The nurse who delivered Gary's results was no exception.

"She said, `You have HIV. You can no longer drink. You can longer smoke. You can no longer have sex. And you need to go home and put your life in order,'" recalls Gary, now 49. "It was, literally, give up your life, go home, write a will, and die."

Nearly 20 years later, much has changed.

Gary is now a vocal Lakeland activist. Much more is known about HIV, the virus that causes AIDS. The disease has moved beyond gay circles and into all sectors of society. And powerful new drugs are helping those who have the disease live long and active lives.

But the stigma against those who have HIV still exists.

That's why Gary, along with 115 other Floridians who are affected by the disease, came to a retreat for victims of HIV last week -- to find support in an otherwise unfriendly world.

The three-day Avon Park camp, called Friends Together, brings together people who are HIV-positive and their families four times a year. It was founded by Lakeland resident Cathy Robinson Pickett in an effort to bring solidarity and support to those living with HIV/AIDS.

Typically, about one-third of the participants come from Polk County, while others come from as far away as Naples and Jacksonville. About two-thirds of those who attend are HIV-positive.

Participants attend classes and discussions, take part in games and sports, and get to know one another -- not only as HIV patients, but as people.

Together, they are proving that life with HIV is still worth living. Together, they are refusing to "go home and die."

Quiet Setting, Gentle Touch

Camp Wingmann rests on the shores of a gentle lake, surrounded by fragrant orange groves and giant cypress trees. It's peaceful, miles removed from busy U.S. 27. The atmosphere alone is enough to soothe the soul and rejuvenate the spirit.

On the front porch of a secluded cabin, Jacksonville mother Deadra Green is enjoying a 30minute massage. She moans as massage therapist Charlie McCray works out the knots in her shoulders and upper arms, relishing his touch -- as an HIV positive black woman, she is not accustomed to gentle ministrations.

"As soon as we walked into camp, I started to heal," said Green.

She brought her four kids with her -- all of whom have tested negative for the disease -- in the hopes of helping them find a support network. The people they meet at this camp may well be the people they turn to if she gets sick, she said.

"A lot of parents have the disease and their kids are affected by that," said Green, 44, who got the disease from a sexual partner. "As parents die, these kids will need to have a support group.'

Her goal is one shared by many at this camp. Countless people who have HIV or full blown AIDS feel isolated, have been rejected by their friends and families, or hide their disease for fear of being ostracized, said Pickett.

For some people, this is the only place they can talk about their disease.

"This is truly a safe place, where they can talk about their fears, their hopes, their dreams, where people will have no judgment on them," said Pickett, 38. "It's a place where they can truly be who they are."

But this camp isn't just about sharing stories. It's also about becoming educated about HIV and AIDS. Much of the weekend is devoted to classes and forums.

Every participant, for example, is required to take a 90-minute class on HIV: how it's contracted, how it affects your body, how to take care of yourself.

In another session, they talk about disclosure: how to tell people, if they have to let their employer know, and, if they do, how they protect their jobs.

And in a third, they talk about legal issues, such as guardianship and living wills.

"Our hope is that people will find empowerment through education," said Pickett, who contracted HIV after being sexually assaulted while working at a convenience store when she was a teenager. "It's scary how many (HIV-infected people) still don't know much about their disease."

Pickett said she hopes that more education will also lead to a drop in the number of AIDS deaths. Polk County had 37 deaths in 2002, five more than the 32 in 2001, according to the state Department of Heath's HIV/ AIDS bureau. Statewide, 1,714 people died of AIDS in 2002.

Campers also learn a little about alternative healing, like using massage to relieve stress and improve circulation, so they can choose options other than medication to resolve some ailments if they wish.

Still, some of the most rewarding moments of camp come simply from time spent with others -- swimming, talking, crying or laughing together.

"This camp reinforces that . . . regardless of whether you're infected or affected, you're still a whole person," said Gary, who was infected by a sexual partner in 1979. "Life with HIV or AIDS is still a life."

Gathering Strength From Each Other

The way Joshua Robinson looks at it, HIV is just one small part of who he is.

"It's just my thing," he said simply.

The South Florida teenager was born with HIV -- his father contracted it from dirty needles and passed it on to his son -- and didn't know he had it until he was almost 9 and his brother blurted it out during an argument.

But the 15-year-old is philosophical about it. Being HIV-positive isn't the death sentence it once was, he says, and it's not going to stop him from living a full life. He plans to get an undergraduate degree in microbiology, go on to medical school, then work to develop new drugs to fight AIDS.

"I can't imagine not making a plan and doing what I want to do," he said. "I want to grow as old as humanly possible and stay as healthy and active as I can."

People like Robinson are the reason Lakeland resident Debbie Reinhardt keeps coming back to the Friends Together camp.

HIV-positive because of a tainted blood transfusion, 52-year-old Reinhardt also suffers from liver disease and uses an oxygen tank to help her breathe.

But when she sees Robinson, or any of the other determined, active and proud people at the camp, she feels like she can tackle anything.

"There are times when I say, `How much more can I take?' " she said. "Then I see these kids handling everything and how positive they are, and I say (to myself), `If they can do it, then you can certainly handle it.'"

The camp doesn't just impact those who are infected. It also helps their family and friends deal with their own feelings.

"A lot of times it helps parents deal with how to talk to their kids about it," said Steve Pickett, who runs the camp with his wife. "It inspires them. After the camp, they quit worrying so much about how to talk about it and what they say. They just start talking."

By the time camp is over, people like Gary, Robinson and Reinhardt are standing a little straighter. People who lived in silence before are now speaking out.

New avenues of support have been forged, and new relationships are blossoming.

And that, Cathy Robinson Pickett says, is what the camp is all about.

"I believe in the human spirit, but this is where you get to actually see it in action," she said. "I know we change people's lives."

Rebecca Mahoney can be reached at 863-802-7548 or rebecca.mahoney@theledger.com.