For six years, Karen Krause cared for her husband, who had been diagnosed with AIDS. When he died in December 1996, Krause could have walked away from any involvement but decided her only option was to continue to fight the disease.
“After my husband died, it would have been very easy to say, `I’m done with it, and I’m going on with life,’ ” said Krause, 43. “But I couldn’t turn my back on the disease.”
Krause, who lives in Wauconda and works as an administrative assistant to a real estate developer, took time to grieve the loss of her husband, Christopher Fryatt. In January 1998, she stepped back into the battle against AIDS by becoming one of 150 volunteers for the HIV Coalition, a nonprofit organization based in Elk Grove Village.
HIVCO sponsors the Hand-to-Hand Food Network, which delivers nonperishable foods to about 70 people with AIDS or HIV in Lake County. The coalition also has about 130 clients in McHenry, Kane and northern Cook Counties and about 50 in the southwest suburbs.
One Saturday morning a month, Krause drives about 80 miles, delivering boxes brimming with food and personal items to four clients on her route.
The coalition’s clients order food and other items they need, such as cereals, pasta, vitamin supplements, canned foods, soap or diapers, from a menu that is submitted to them a month beforehand. The clients, who range in age from 3 to 61, receive ingredients for 30 nutritionally balanced meals a month.
The HIV Coalition was founded in 1987 to provide education on HIV and AIDS, both to people living with the disease and to the general public. The coalition continues to educate through pamphlets and seminars for church groups and other organizations. But its mission expanded in 1995 when it launched the food network.
“It was the advent of the new (AIDS-fighting) drugs (that led to providing food),” said John Buckley, the coalition’s program director. “Clients were having to choose between buying food and purchasing medicine.”
The powerful medicines, he explained, can cost thousands of dollars a year, and even people who are covered by health insurance find it a stretch to pay the out-of-pocket expenses for drugs, doctors’ visits and blood tests. Unfortunately, maintaining a job and, thus, health insurance can also be difficult for people who may feel the ravaging effects of the disease.
“If you’re sick and can’t work, you lose your job and your insurance,” Buckley said. “It’s really a downward spiral.”
John, 39, has both a job and health insurance but said he is thankful for the help of the food network. John (not his real name), who works as a custodian at a middle school, earns $26,000 a year and is raising a 16-year-old son.
“Being a single parent, it’s very hard to feed my child and myself,” he said. “The cost of medications is overwhelming, especially on my salary.”
John said the annual cost of his AIDS-fighting drugs is about $12,000, and he pays about 20 percent of those costs himself. Before learning about the food network, John said he sometimes felt torn between spending his paycheck on food or on medicine.
“Sometimes I thought I might have to give up my medications for a month,” he said. “But my medication expenses came first. It was live or die.”
Today, as a result of contributions from the food network, John said his diet and his son’s are more diverse and healthy. “There aren’t so many peanut butter sandwiches or macaroni and cheese meals,” John said with a laugh.
Food, of course, is essential to everyone’s health, but it’s especially important for someone fighting HIV or AIDS.
“Nutrition is a key component of caring for yourself when you’re living with HIV or AIDS,” Buckley said. “Some drug programs require that you eat when you take your medicine or they require a certain (type of) diet. A good diet maximizes the benefits you get from the medicines.”
John learned about the food network through a church support group for people with HIV or AIDS. Others are referred to the network by various organizations and agencies, such as the Cook County Department of Public Health. The only eligibility requirement is proof of HIV status.
Joan Gordon, HIV care coordinator for the Cook County Department of Public Health, said the food network is answering an important need for clients.
“There’s an enormous need for the necessities of life for these people,” Gordon said. “The progression of the disease usually brings on disability.”
Many of the coalition’s volunteers have been affected by the disease, often through the death or illness of a loved one. Such is the case of Eloise Brittain of Arlington Heights. Her son, Bill, died in 1990 at the age of 34 from AIDS. Now Brittain helps out in the coalition’s office and at food drives. She also packs boxes with food at the warehouse and makes deliveries.
Like Krause, Brittain said her volunteer work has helped her turn her grief over the devastating, premature death of her son into something positive.
“I lost my son to AIDS, and I just wanted to help in some way,” she said. “I’m retired, I have the time and good health, so I thought why not put it to good use?”
Although volunteering may sometimes try her emotions and spark painful memories, Krause said it is a battle she cannot turn her back on.
“I feel compelled to tell people about this disease,” she said. “(Being a volunteer) makes me remember the reality of living with AIDS. I want to be a part of that world.”
Her work also lifts her spirits. When she delivers food, she often stops to chat with clients. “They seem to very much look forward to seeing me. I get such a sense of acceptance from them,” she said.
HIVCO moved this spring to an Elk Grove Village warehouse from Rolling Meadows. “It’s a smaller space, but it provides us with a permanent home and combines the administrative offices and the warehouse,” Buckley said.
The Hand-to-Hand Food Network distributes boxed goods, such as cereal and pasta; canned goods, including spaghetti sauce, fruit and soups; baby food; and personal items, such as toothpaste, detergent and diapers. The organization receives many of its items through food drives, sponsored by the group and other community organizations.
According to Buckley, in December 1995 HIVCO had 23 clients in Lake and Cook Counties; by the end of this year, the agency expects to serve 300.
John said being part of the food network has helped sustain not only his body but his heart and will to live. When he was diagnosed with HIV, he found that many friends, even close ones, seemed unable to deal with his illness and walked away.
Through the food network, however, “I’ve learned that I’m not so alone as I thought I was. There really are true, caring people out there,” he said.
During the day-to-day battle against illness, John said his greatest friend and ally has been his son. And he has begun to dream.
“I pray to see my son graduate from high school,” he said. “And I pray to live to be a grandpa.”
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To volunteer or for more information about the HIV Coalition, call 847-228-5200.
