Living with HIV/AIDS, part 3

Clare Howard

For more than 300 days, Michael Fleming was a regular visitor at Knox County Nursing Home, seeing his mother who was in the final stages of Alzheimer's and his "baby girl" who was battling HIV/AIDS and related brain cancer.

His mother died, and his daughter Nicole Fleming, 30, came home after 11 months. She's lost her hair, which once fell to the center of her back. She still fingers the scar on the right side of her head where surgeons sawed into her skull to remove cancerous brain lesions.

Michael Fleming's younger brother died of HIV/AIDS -- alone.

Fleming recognizes his family's luck and vulnerability in the fight against HIV/AIDS.

The Flemings trace their lineage to the first black family settling in Galesburg in the mid-1850s. There was a Fleming living on Mulberry Street for 150 years. Only tangentially did HIV/AIDS first insinuate itself into their lives. Then, over the past decade, the grip tightened on this and other black families nationwide.

Today, HIV/AIDS is the No. 1 cause of death for black women age 25 to 34. African-Americans comprise 12 percent of the population but half of all AIDS cases diagnosed in 2005.

"AIDS is in epidemic proportions in our communities," said the Rev. Harold Dawson Jr., with New Hope International Ministries, 3616 N. Sheridan Road in Peoria. "As a church, we can advocate for abstinence, but we can't stick our heads in the sand and not recognize that sexuality exists. A tension exists between advocating abstinence and instruction in use of condoms, but we have got to look at the total picture, and education plays a pivotal role."

John Peller, director of state affairs for the AIDS Foundation of Chicago, said high rates of HIV/AIDS in the black population reflect multiple societal problems including homelessness, unstable housing, lack of health care and the high rate of incarceration among black males.

Peller said African-American women in marriage and monogamous relationships are especially vulnerable because incarceration interrupts partnerships and results in the likelihood of multiple partners over a lifetime.

Working in a funeral home for more than 37 years, Michael Fleming recalls how the federal government mailed morticians heavy rubber gloves in the 1980s to use when working on the bodies of people who died of AIDS.

"We didn't know how to deal with this. The gloves were hot, and people didn't wear them. We didn't know what to do with instruments that were used. Galesburg is a small town. If someone died of AIDS, we probably knew," he said.

He's critical that the government hasn't assumed a more aggressive position on prevention.

Coping with the Disease

Lack of information is something Nicole Fleming cites today. She was 15 when she got pregnant, 16 when she gave birth to her daughter and 17 when she was diagnosed with HIV in 1995.

"In the beginning, I was in denial, couldn't tell Mom and Dad," she said.

She moved to Davenport, Iowa, worked, had two more children and managed without seeing a doctor and without medication until 2003 when her virus caught up with her. She suddenly started sleeping all day and all night. She saw a doctor who took a blood test and told her she had full-blown AIDS and would die without medication.

HIV progresses to full-blown AIDS when the CD4 blood count falls below 200. CD4 cells are white blood cells that fight infections. Nicole Fleming had a CD4 count of 5. When CD4 levels fall below 200, patients have the highest risk of developing pneumocystis pneumonia, a common opportunistic lung infections in people with HIV. They are also vulnerable to Kaposi's sarcoma skin cancer and brain tumors.

"My mom and dad always told me I can come home. In Iowa, they were going to take my kids because I was sleeping all the time. I called home and told my mom and dad I have AIDS," she said recently, staring across the living room at her father.

On June 3, 2004, she packed all her possessions, her parents rented a truck and drove her and their three grandchildren home to Galesburg.

Even then, Nicole Fleming had trouble taking her medication. She said she had told her doctors she can't swallow pills. She started to have seizures. She was in and out of OSF Saint Francis Medical Center in Peoria. After one emergency trip to the hospital, her father found more than 175 pills that she had taken out of her mouth and hidden in her room.

After her brain surgery and chemotherapy, her doctor told her she had to go to a nursing home to ensure she swallowed her medicine. Two nursing homes in Galesburg, including the one where her mother works, refused to accept her.

At Knox County Nursing Home where she was admitted, she remembers how staff taught her to crush her pills and mix them in pudding. Now she chews her pills and won't miss one -- "not for a truckload of money," she said.

"Dumb and hard-headed," she said about herself, staring at her father and pointing a finger toward him.

"You don't get that from me," he said.

"I know I'd be dead without my parents. I apologize to my mom and dad and can't believe what I've put them through," she said. "I had to learn to walk and talk again. I still can't write well."

One of her children's teachers recently insisted that her son had forged his mother's signature on his report card because the writing was so labored. It was, in fact, a signature that Nicole Fleming arduously penned herself.

Her three children, ages 13, 11 and 9, were tested and are negative for HIV/AIDS.

Michael Fleming said, "My baby girl would be dead, but a lot of her recovery comes from people in Galesburg and these little towns around here. People praying for her."

"No one has turned their back on me," Nicole Fleming said.

Reaching Out

One of the people now keeping in constant contact with her is Diana Cook, one of nine case managers at the Heart of Illinois HIV/AIDS Center. In 1995, Cook met Nicole Fleming in a park in Monmouth for their initial contact and then lost touch with her for the years she lived in Davenport.

Cook travels more than 24,000 miles each year visiting HIV/AIDS clients in their homes in central Illinois. She requested that her picture not be used and her car not be described because people in small towns would be able to identify who she visits and conclude the reason.

"Diana is good people," Michael Fleming said.

Another HIHAC client in Peoria said, "I was suicidal before I met Diana."

Cook, 40, was recognized with a Red Ribbon Award by the Illinois Department of Public Health during its annual HIV/AIDS Conference in Springfield in November. She was honored for her work providing a continuum of care for people with HIV/AIDS.

She has worked at HIHAC for more than 12 years. When she started, the center had 13 clients. Today, the center works with 450 clients.

HIV/AIDS comes with a double burden, she said: It is incurable and it is a cause of discrimination and stereotype.

"Some people still believe HIV can be transmitted by a toilet seat," Cook said. "It is transmitted by blood, semen and vaginal fluids. It is killed by bleach, sunlight and air."

After initial problems in the 1980s, the blood supply through the American Red Cross is now carefully screened.

Dr. David Mair, one of the American Red Cross Mid-America Division medical directors, said, "The blood supply today is safer than it has ever been. The estimated risk of HIV transmission per unit transfused is approximately 1 in 2 million."

Focus on Prevention

Like so many people working with HIV/AIDS, Cook believes in comprehensive sex education in the schools. Anything short of that means many children do not know how to be safe, she said.

Besides case management for her clients, she works on a special mission. Driving home from Galesburg after visiting Fleming and other clients on a recent Wednesday, Cook reached for the Tylenol kept in her car and referred to the 100 condoms in a red canvas bag tucked behind her car seat.

At the conclusion of the 2004 consortia on HIV/AIDS organized by the Illinois Department of Public Health, participants were asked what they could do in the next year to slow the spread of HIV. Cook pledged to distribute more condoms.

Her bag is filled with both male and female condoms, plain and flavored. There are chocolate-, mint-, vanilla- and grape-flavored condoms. There is the dental dam, which is taped on a woman's face when she performs oral sex, an act that can transmit the HIV/AIDS virus through semen.

"Most parents don't want to talk about sex, don't want to talk about condoms, but if we are to control this disease, kids need to know how to be safe," she said.

Comprehensive sex education is not mandated in Peoria public schools.

Back at the HIHAC offices in Peoria, Cook discussed with colleague Lisa Roeder the controversy about comprehensive sex education in the schools.

Both women believe solutions to the spread of this virus rest with public education.

Roeder, social services coordinator at HIHAC, said, "I would like to tell some of these educators who say comprehensive sex education does not belong in the schools. ... I would like to say to them: 'Then you be the one to tell these 19- and 20-year-olds they have HIV.'"

Earlier that day, sitting in the Flemings' living room, Cook asked Nicole Fleming if she had comprehensive sex education in school or if her parents had taught her about how to protect herself from HIV/AIDS.

"No. Not in school. No way could I ask my parents about sex," she said, looking at her father. "No. No way."

She has explained to her daughter, 13, how the virus is transmitted.

Michael Fleming silently nodded his head: yes, he has explained to his grandsons, 9 and 11, how to be safe.

The room is silent for some time.

Clare Howard can be reached at 686-3250 or