Aids Commissioner Belinda Mason Speaks with Ringing Authority About the Disease: She Has It
updated 12/11/1989 AT 01:00 AM EST
•originally published 12/11/1989 AT 01:00 AM EST
"It's more than a little embarrassing to be famous for being sick," Belinda told her old friends, smiling. "Especially with a disease like AIDS."
Last July, President Bush appointed Belinda Mason to the National Commission on AIDS, which was created by Congress to guide government policy on AIDS. Belinda is the only member who actually has the disease, and she jokes, "I've become the AIDS poster child." The 31-year-old country journalist has dedicated her remaining life to spreading enlightenment about AIDS ever since she was found to be HIV-positive from a transfusion three years ago. "You can't have serious marching music without a trombone," Belinda said recently, reminiscing about the instrument she once played in the school band, and she is the AIDS Commission's lead trombone. "It's lousy to have AIDS, no matter how you get it" she says. "One way to get people caring about AIDS is to get them to recognize themselves in you."
It is a job for which she is especially qualified. "It sounds trite," says David McBride, her editor at the Ohio County Times-News in Hartford, Ky., "but I don't think she has ever met a stranger." Since her appointment, Belinda has made some 50 visits to clinics, churches and schools, urging people to respect the rights of people with AIDS. But she had to cancel appearances for the rest of this year after twice being hospitalized in October with complications of the AIDS virus. Three weeks ago her condition was reclassified from HIV-positive to AIDS.
"I was comfortable with the idea that I'll die," she says. "But I didn't figure on it being for a few more years."
When the then healthy Belinda Mason and Steve Carden learned in 1986 that she was expecting a second child, they were thrilled. But on Jan. 17, 1987, the door slammed shut on what she now calls "that other lifetime." She went into early labor at their home in Hartford, and doctors at the nearby Regional Medical Center of Hopkins County performed an emergency cesarean. The baby, named Clayton, was fine, but Belinda's uterus ruptured: Hemorrhaging, she went into cardiac arrest, then suffered a stroke, and doctors performed a hysterectomy the next day to stop her bleeding. "I always thought I'd have a whole tribe of children," she says.
After four days in a coma, Belinda awoke unable to see or to move most of her body. But she could talk. "She always had the gift of gab," says Steve. "I fell in love with her all over again." Says Belinda: "At least 100 people visited me. They prayed over me and brought me flowers and nightgowns." But the worst news was coming: Four of the six units of blood platelets (a blood component that promotes coagulation) used during her hysterectomy had not been screened for the AIDS virus. The day after the operation, the blood the platelets came from was tested. Several days later, Steve recalls, her physician said, "I don't know how to tell you this...some of the platelets we gave your wife were contaminated with HIV."
"You might as well have told me I'd be on Mars," says Steve, his voice still incredulous. "It was not in the realm of possibility." He kept the news from Belinda while she recuperated, and in March, after she had come home, her doctor told her she had the AIDS virus. "I felt like I'd been run over by a truck," she says.
For two months, the stunned couple informed only their parents and sought medical advice. The first doctor they went to told them just to "live happy" and wait for the inevitable. That was not quite their style.
"You know how things are always happening to me?" Belinda told her editor, McBride. "Well, those sons of bitches at the hospital gave me AIDS."
Mason's grit and spirit date back to her Appalachian childhood on Sandlick Mountain in Letcher County. "When I woke up every morning, I had the feeling that life was just ripe with possibilities," she says. "I was born with the mountains in my blood, in the way I felt in the spring, in the way I felt when I saw things being green, and my blood would sing with it. We had exactly what we needed, and even some of what we wanted." By third grade, she was writing stories. "The hero was always a woman," she recalls, "someone who came and fed hungry people or saved a city from a big flood." After a brief teenage marriage, she graduated in 1980 from the University of Kentucky in Lexington with a degree in journalism, and in 1981, while working as a state public relations employee, she met Steve Carden, now a philosophy teacher. Married that summer, they chafed at city life in Lexington. "We didn't want to be around nice cars anymore and people with nice clothes," says Belinda. So they moved near Steve's parents in Hartford, where a sign on the edge of town reads, WELCOME TO HARTFORD, KENTUCKY, HOME OF 2,000 HAPPY PEOPLE AND A FEW SOREHEADS. Belinda got a job as a reporter-columnist for the weekly Times-News, wrote about baking contests and the Coon Club, joined the Baptist Church, hosted Tupperware parties and sang with Steve at the Down Home Opry on Saturday nights. "I didn't ever meet people who were having identity crises or worried about making a career change," she says. "And it was wonderful the way people invited me into their lives."
Their first child, Polly, was born in 1982 by cesarean, and Belinda was soon back on her feet. Then, in 1986, she got pregnant again. "I loved having Polly, I loved my work, I loved my husband," Belinda says. "I was so happy."
After Belinda was infected, she and Steve felt increasingly isolated and confused. Her father, a state legislator, contacted state agencies about AIDS programs in Kentucky. He was told there weren't any. Finally, he called the Centers for Disease Control in Atlanta, which suggested a specialist in Cincinnati, 200 miles away. The doctor reassured Belinda that hugging and kissing put the children at no risk. He also put her on AZT, the AIDS drug that had become available. "If I'd been infected five years earlier," she says, "my goose would be cooked by now."
Finally, the couple began telling friends and neighbors about Belinda's AIDS and asked their preacher, the Reverend Bill Holladay, to tell their congregation. "They cried openly," he says. And when Belinda attended service a couple of weeks later, "everybody hugged her."
In July 1987, Belinda and Steve sued the Regional Medical Center for $10 million. Newspapers picked it up, and soon the story was common knowledge. Belinda felt she had suddenly become "that woman with AIDS." If she was picking up potatoes at the grocery, other shoppers seemed to bypass that section. She felt stares when she took Polly to a public pool. Suffering from their loss of privacy, the Masons decided to move for a while to Tell City, Ind., about 45 miles away.
It wasn't until April 1988, when she attended a conference on AIDS in Boulder, Colo., that Belinda's feeling of isolation began to fade. "For the first time, I met others with HIV infections," she says. "We shared our experiences, and with those men I scaled the invisible wall which had gone up around me." Belinda began speaking out. She helped form the Kentuckiana People with AIDS Coalition and last spring was elected president of the National Association of People with AIDS, an advocacy group.
Last January, the suit against the hospital was settled. The hospital admitted giving Belinda the untested platelets but denied fault, saying no others were available and using them was a life-saving necessity. Both parties are barred from divulging the terms, but the money awarded them enabled Belinda and Steve to pay off their medical debts, hire someone to clean house and help care for the kids, and it financed a move back to Kentucky this fall. There they've bought some farmland and begun building their dream house.
Belinda has been able to balance her dedication to the AIDS cause with her family's need to preserve some privacy. "When we're at home, no one knows if we're spinning gold or whatever," she says. "I want something to retreat to." But the stress of her condition is inescapable. A while ago, Polly, nearly 7, who has known about the illness from the start, asked her mom if she was going to be there when Polly graduated from elementary school. "I told her I'd sure try," says Belinda. "I don't know what I'd say now. But it's possible I could get one more really good remission."
Whatever happens, she has no self-pity. "I would not trade places with any person," she says. "My life is abundant, and I continue to be highly blessed."