Alice Rodriguez, a volunteer at Illinois Masonic Medical Center, has little tolerance for AIDS patients who want to lie in bed all day feeling sorry for themselves.
She believes that people-not the disease-should control their lives. It is a philosophy she has lived by since learning she was HIV-positive five years ago. Last year, she was diagnosed with AIDS.
Sometimes, patients, frustrated with being sick, simply want to give up. Rodriguez tries to show them an alternative.
“I tell them I’ve been in their situation. I’ve been in that bed, and I have AIDS,” said Rodriguez, 39. “It’s therapy for me possibly because I get to see my own mortality. It’s hard to know that (death is) going to happen to me someday, to know I’m really going to get sick.
“They’re more apt to respond to things that I ask them to do. They see me walking around, and they figure if it worked for her, maybe it’ll work for me.”
Rodriguez, who has worked with AIDS patients at the Chicago hospital for seven months, is part of a changing cadre of volunteers who are donating their time at hospitals, comforting and assisting people suffering from the disease.
What once was a task accepted primarily by gay men and families of people with AIDS has grown in recent years to include everyone from students to retirees to people who have the disease themselves.
The reason, in part, is improved education about the disease and how it spreads. But many volunteers said they decided to step in and help after hearing about people with AIDS being abandoned by their families, because of fear or shame.
“This is what I call the second wave of volunteers,” said Paul Hook, director of volunteer services at Cook County Hospital’s HIV center. “A good 50 percent of our (53) volunteers are HIV-positive. People see this is a social ill and needs are not being met.”
Illinois Masonic and Cook County Hospital are the only two in the Chicago area that have volunteers specifically trained to work with HIV and AIDS patients. At other hospitals, volunteers work in a variety of areas.
County Hospital, which treats most of the county’s indigent or uninsured patients, sees 40 to 60 HIV or AIDS patients a day and more than 1,300 are admitted each year, according to Hook. Illinois Masonic sees about 81 patients a month, and last year, admitted 974, hospital officials said.
A more diverse group of volunteers is making it easier for hospitals to address the needs of AIDS patients.
Fourteen-year-old Jason Lukasik, of Chicago, and 16-year-old Matt Freeman, of Evanston, are among the 40 trained volunteers at Illinois Masonic.
Once a week, they go to the North Side hospital to help nurses pass out food trays or run hospital errands. Sometimes, they simply sit and listen to patients who want to talk.
In exchange Lukasik, who wants to become a doctor, gets class credits at St. Benedict’s High School, where he is a freshman. Freeman, an aspiring musician whose parents are both physicians, does it because he likes it.
“I was expecting it to be worse than what I saw,” Lukasik said of the AIDS ward. “Even though these people know they are going to die, they try to live a happy life. They smile, they talk and they’re open.”
The kind of personal attention offered by the volunteers has helped improve the quality of life for 27-year-old Tony, an AIDS patient at Cook County Hospital.
“When I came here, I felt like dying,” said Tony. “It’s nice when you feel someone cares, especially a stranger. It makes you feel that you’ll be accepted when you get out of the hospital.”
All AIDS volunteers must undergo nearly 20 hours of training before they start. The training, known as “HIV 101” offers extensive education about the virus and its progression to AIDS. It also includes sessions on hospital policies and outreach programs for patients once they leave the hospital. In order to avoid burnout, both hospitals limit the number of hours volunteers can work and hold regular support meetings for them.
“I don’t want this to be their life,” said Russ Leander, coordinator of Illinois Masonic’s program. “One of the things I encourage is that volunteers only work four hours per week.”
But some volunteers, like Henry Williams, 51, of Chicago want to be there five days a week. For Williams, who is HIV-positive, helping others makes him feel better about himself.
“It has given me some worth. I don’t feel like such a bad person,” said Williams, who began volunteering at County Hospital two years ago.
“They told me that some of the (AIDS) patients that are near death are brought to the hospital in their pajamas and left by their families. That would be such a terrible thing-to be dying and there’s no one there to hug you or hold you and no one there to care.
“A lack of love, understanding and emotion kills you-it probably kills you before the virus will.”
The strength to go on can come from many sources. But Rodriguez draws hers from the people who need her: her husband, her two children and her HIV-positive friends.
Her dream is to see her 13-year-old son and 15-year-old daughter graduate from high school. But for people with AIDS, the future is just too uncertain.
“I don’t think there’s going to be a cure by then,” she said. “I’d like to dream until the end, until I can’t anymore.”
