Sunday, March 21, 1999
One of the faces of AIDS
The disease took her daughter, and it will take her, too, but there's much to do before then
BY MARK CURNUTTE
The Cincinnati Enquirer
This is an obituary about somebody who's still alive.
That's the idea two callers had. The somebody is Kelly Chambers. “She's a person who deserves to read her obit,” one said.
Kelly is 30. She has been HIV-positive since 1986, the year she graduated from Oak Hills High School. “Unprotected sex,” she said. “I know who I got it from.”
Crystal Chambers, Kelly's daughter, died from AIDS on Nov. 16, 1991. She was 14 months. They were at home in Cleves. Kelly was holding her. Sesame Street was on TV.
Kelly didn't know she was HIV-positive until Crystal was 6 months old. Kelly found out from doctors treating her daughter at Children's Hospital Medical Center. The baby is HIV-positive, they said. Dad is negative. Mom is positive.
Kelly ran from the room. Her cries echoed in the hallway. “Oh, I've killed you.”
Now Kelly's time is running out. “It is,” she whispered when her mother turned her back to answer the phone in the Holmes Hospital office they share. Dixie Sucher doesn't like to hear Kelly talk that way. Dixie is vice president of Kelly's organization, For AIDS Children Everywhere. They call it FACE.
HOW TO HELP
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• What: For AIDS Children Everywhere (FACE).
• Where: P.O. Box 19783, Cincinnati 45219. (The office is in basement of Holmes Hospital, corner of Eden and Bethesda avenues, Corryville.
• Mission: It is a nonprofit, tax-exempt agency dedicated to providing services to children and their families who are infected or affected by HIV/AIDS. It is in need of nonperishable food items and nonfood items that are not covered by food stamps, such as diapers and household and personal hygiene items.
The organization also is attempting to raise money to take HIV-positive children on an overnight outing to Sea World in Aurora, Ohio.
• Information: 584-3571.
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FACE has assisted children in more than 150 HIV-positive families — “infected or affected,” Kelly said — with peer counseling, groceries, household and hygiene products, clothing, recreational outings, holiday and birthday gifts and transportation to clinic appointments and group meetings.
“And I can tell you each one of their names,” Kelly said.
It's what she has done through FACE that has won her admirers. She didn't crawl in a hole. “Almost,” she said.
Why not? “I said I'd follow her down,” Dixie said.
“I couldn't have that,” said Kelly, who instead redirected her grief into helping other people like her and her daughter. Dying mothers with dying children.
Kelly co-founded the group in January 1992 with another HIV-positive mother who'd lost a baby to AIDS.
Kelly and her FACE co-founder were soul sisters. They helped each other cope with their children's deaths. They buried the girls beside each other in the infant section of Spring Grove Cemetery. The women also picked out their plots together, too. They are side-by-side, not more than 50 feet away from their daughters' graves.
But the two women are now estranged.
Kelly's co-founder, who thinks she got AIDS from IV drug use, took a sabbatical from FACE in October 1996. In November 1997, with her name still associated with FACE, the woman broke into the group's office in Holmes' basement, took money and checks made out to Kelly and signed Kelly's name to them. Kelly had to sell her car and several belongings to buy gifts to give to youngsters at FACE's annual Christmas party.
Kelly filed a complaint, and the woman is now serving a one-year sentence for theft and possession of drugs, according to Ohio Department of Rehabilitation and Correction records.
Kelly has no plans to reconcile with the co-founder. She won't let heartache slow her.
“In my condition, I can't let anyone bring me down, emotionally or physically,” she said.
Now it's Kelly and Dixie. They don't take a dime from FACE. Their hospital office is donated space, and it's a busy place. There are boxes of tissues everywhere. Health books and directories are squeezed onto shelves, competing for space with photographs of Crystal and bumper stickers: “My next office will have a window.” “Fight AIDS. Not people with AIDS.”
Dixie, who's in her late-40s and lives in Delhi Township, quit her job with a cleaning service to work with Kelly. She will take over when Kelly dies. “I wanted to be with her to watch her,” Dixie said.
Kelly has had full-blown AIDS since 1994. An infection took the hearing from her left ear; she turns her right ear toward people to hear them speak. She has constant leg pain. She and her doctor decided to take a break from her medicine, which is rotting some of her teeth. She used to have a round face beneath her strawberry-blond hair. Over the past two years, AIDS has whittled her once-full figure into a stick.
“Please put some weight on her,” Dixie said to a photographer taking Kelly's picture.
Kelly's relationships with the people around her changed after she went public with her AIDS. So did her circle.
“I lost all my friends when I told them I had AIDS,” she said. “I told them I had cancer originally. One friend, I knew her since we were 4, she told me she couldn't watch me die piece by piece, the way we watched Crystal die. But I have made new friends.”
And admirers.
Aside from its 13 directors, FACE's board has eight high-profile honorary members. That list includes Cincinnati Mayor Roxanne Qualls and Dr. Peter Frame, director of University Hospital's Infectious Disease Clinic and Kelly's doctor.
FACE is thought to be the only group of its kind nationally.
“There is an organization in Texas for women and children with AIDS, but it wasn't set up by women with AIDS,” said Pam Daniel, a nurse in the infectious disease clinic who met Kelly when Crystal was hospitalized at Children's.
“I liken FACE to what people who come through drug treatment say. There are two kinds of counselors: People who've gone to school and people who are recovering. The people who are recovering are the ones who get the respect. I'm as empathetic as I can be, but I can't understand.”
Kelly does. “AIDS drains your bank account,” she said. “It can make a wealthy person a poor person. Before I got hooked up with the government, my meds were costing me $2,800 a month.”
Beyond money, dying women and children have many emotional needs.
“Isolation and fear. I felt like I was the only woman in the world with a baby who died of AIDS,” Kelly said. “When I formed FACE, there was not another group geared toward women and children. I was alone. It hurt. I didn't want another woman to hurt the way I did.
“We don't judge. It doesn't matter how you got it.”
Many people with HIV and AIDS marvel at Kelly's ability to put them first. FACE is short on bureaucracy and long on personal touch.
Eric Gamble, 30, of Lincoln Heights met Kelly when the mother of his child was diagnosed with HIV. The woman died in 1996.
“Kelly tried to do everything to comfort her,” said Mr. Gamble, who is also HIV-positive and sees a specialist every two weeks at Holmes. His child, now 4, is HIV-negative.
“Kelly got us food, toys, money at times when I was in a bind,” he said. “She gets close to you when nobody else will, you know.
“Whenever I'm at the clinic, I stop in to see her. She lifts my spirits.”
Good times are few for families with an HIV-positive or AIDS-stricken child. Kelly knows this, too. That's why FACE tries to create what she calls “Memory Making Outings.”
As a mom, she is sustained by the memory of Crystal's first birthday. The party is part of a manuscript Kelly has written and would like to get published about her daughter's life and death.
“We had aunts, uncles, friends, tons of presents and cake,” Kelly said. “Crystal stuck her hand in the cake. It was a great day. We didn't have to go to the hospital. She could be a normal kid. There was no needles and no probing. Nobody stuck her. There was no crying, no spinal tap, no IV. She screamed because she was happy. She was happy.”
The tears flow down Kelly's face, but she keeps talking.
“Sometimes, that's all us moms have — memories. A lot of our kids are so sick, and their parents are so poor and sick, that their outing with us might be their last adventure.”
She pulls a scrapbook from a shelf. FACE took a dozen kids to Sea World in Aurora, Ohio, in 1995. They petted dolphins, ate pizza, stayed overnight in a hotel and forgot about hospitals for a couple of days.
A handmade thank-you card falls from between the scrapbook's pages. It is made of orange construction paper, folded in half, and has a yellow paper flower on the front.
“Thank you,” the little girl wrote. “I like my doll. I like my game.”
On the back, she cut the shape of a school bus from a sheet of lined notebook paper.
“That's her on the bus going to Sea World,” Kelly said. “She died a month after that trip.”
FACE takes children to sporting events. The Mighty Ducks and Cyclones hockey teams are generous with free tickets and souvenirs. FACE has a Christmas party every year for children and their families. Santa gives each child a new toy. Local Marines involved in the Toys for Tots program have donated dozens of new games, dolls, trucks and balls. Cincinnati's gay, lesbian and bisexual community has been supportive from the beginning. Loveland and McAuley high school students and the Wellness group at the University of Cincinnati are some who have organized canned food drives.
Dixie keeps organized an adjacent storage room in the Holmes Hospital basement. There's not much in there right now.
“We need everything,” Dixie said. “We gave everything away.”
The budget is so small that the organization, as a tax-exempt nonprofit, does not have to file a financial form.
FACE receives no public money; it operates entirely on private donations and within the last year has turned around about $20,000 in goods (food, clothing, birthday and holiday gifts for children, household items) and services (transportation and trips).
“We've survived this long by begging,” Kelly said.
Pam Katz is a three-year FACE board member and Blue Ash CPA who volunteered to do the group's books.
“I don't know how Kelly and Dixie do everything they do,” she said. “Kelly's legacy will be how she touched children who were infected or affected and by educating huge numbers of people — like me — who had questions in the beginning about AIDS based on lack of information.”
Kelly is a tireless public speaker and will address 60 first-year students in Northern Kentucky University's nursing program in April. It will be the fourth consecutive year she has been there.
“She came over one year with pneumonia,” said Frances Mosser, an associate professor of nursing at NKU and Kelly's contact.
It's one of 13 times Kelly has had pneumonia since 1994.
“She was weak and had chills, and we tried to send her home,” Ms. Mosser said. “But she wanted to speak. So we sat her down and wrapped a blanket around her. She spoke and answered questions for more than an hour.”
Kelly is Catholic. Her faith is strong.
“I was angry with God for having Crystal endure so much pain before taking her,” she said. “I was angry that somebody in my family circle would be infected. But it's not his fault. It's nobody's fault.
“He gave me the strength I have today. I should honor him. I hope I am doing his work.
“I don't read the Bible. I don't go to church. I believe in God. I believe in life after death. I believe church is anywhere you choose to pray. There are times you pray, "Come get me now. I'm tired of suffering.' Then you have good days.
“I believe this has happened for a reason. I took something ugly and bad and turned it into something good, and not just for myself, but for everyone I have met. If I can take a teen-aged girl and make her realize she's not invincible and prevent her from getting AIDS, I've done something good.”
Clarence and Kelly Chambers have been married for more than 10 years. He's HIV-negative and works as for his father on the family farm near Brookville, Ind. He supports her work. At Kelly's request, he has even talked to some fathers of HIV-positive children.
But Clarence doesn't have a lot to say publicly.
Kelly has a lot to say about her husband. “I'm the luckiest woman in the world,” she said. “We wanted four kids, two boys and two girls. I wanted to stay home and be a mom.”
She worked as a waitress before Crystal was born. Then Kelly stayed home. Then she and her husband found out why their baby was always sick.
“When our daughter was in the ICU, I told him, "Divorce me. Get a healthy wife who can give you healthy children.' He told me no. He said his vows were for better or worse, sickness or health. ...”
More tears. More talk. She's fervently trying to make the most of the time she has left.
Kelly and Clarence are legal guardians of another child. The child's parents had AIDS. The mother committed suicide. The father died in Kelly's arms.
“I've seen people who had nobody,” Kelly said. “People have been afraid to say they had AIDS, even to their own family. This man was alone. I climbed into his bed at the hospice and put his head in my lap. I stroked his hair and said, "I've got your baby. I'll take care of your baby. Your baby will be OK. Go ahead if you want to. It's OK.' Then he took a deep breath and died.”
Clarence will care for the child after Kelly dies.
There's only one problem with writing Kelly Chambers' obituary ahead of time. She has a lot of life left in her, even if her time is short.
The news last week wasn't good. Her T-cell count is down, and T-cells are what ward off infection. Kelly had to go back on her AIDS medicine cocktail. It has major side effects, and she had been off it since Dec. 22.
“I have to take pills to go to sleep,” she said. “I have to take pills to wake up. I have to take pills to go to the bathroom.”
There are many side effects. “The meds got her teeth,” Dixie said. “She's missing one of the front ones. I want her to get it fixed before she goes out again, so she can smile.”
Still, she's working to come up with money to take another group of dying children to Sea World this summer. She needs at least $2,000. FACE's storage room is bare, and there are always phone calls to make to ask for donations. She maintains a busy speaking schedule; Aiken High School is up next.
Kelly pauses long enough in the FACE office on a winter afternoon to talk about herself. The woman who has made wishes come true for more than 100 dying children has a couple of wishes of her own. Three to be exact.
She'd like to go on an Alaskan cruise and see whales in their natural habitat. She'd like to meet Diana Ross and have her sing and dedicate the song “Do You Know Where You're Going To?” to her.
Kelly also wants to go bungee jumping.
“That's the last thing,” she said. “When they tell me I have two weeks to live, that's what I'm doing.”
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