In 1990, with the AIDS crisis reaching its peak, "a lot of people didn't want to work HIV," said Margaret Bausch, which is why she decided, while a nursing student at Truman College, to work as a nurse aide in Unit 371 at Illinois Masonic Hospital.
"I'm gay and I wanted to put back into the community, you know?" she said.
Bausch worked in the unit for a year and remembers the lively spirit created by its atmosphere of compassionate care.
"When [ nationally syndicated cartoonist and AIDS activist ] Danny Sotomayor was in, he and two of his friends were laying in bed together and I wasn't sure which one was the patient," she said, laughing.
And while "there were a lot of gay people [ working ] on that unit and a lot of the attendings [ physicians ] who were admitting to that unit were gay," the compassion extended to all patients admitted to the unit, regardless of sexual orientation.
"We had a prostitute who had gotten HIV from injectible drug use and she had an open area—well, it was more than an open area on her arm; I mean, you could see both bones on her arm," Bausch said. "She had to keep it completely bandaged when she was out plying her trade. And there was a drag queen—they became good friends and when they were admitted to the unit, they wanted to be in the same room together. Admitting didn't really want to put a male and a female patient in [ the same room ] , so we [ the Unit 371 staff ] would sort of arrange for them to be together."
But, as this was in the relatively early days of HIV and AIDS care, there were times that well-meaning support from friends and loved ones—which was welcomed in the unit—backfired.
"We had a patient that was on a heparin drug—which is a medication given as an anti-coagulant—and his friends hired a massage therapist to come up and give him a massage," Bausch said. "And when you're on a heparin drip and somebody gives you a deep tissue massage, you end up looking like somebody's been beating you with a baseball bat. You just bruise everywhere.
"The attending [ physician ] came up to the desk screaming at us, 'What happened to him?' And we didn't know what happened to him but I guess the massage therapist just signed in like he was a regular visitor and then went in there and gave him a massage without asking."
But despite the occasional setback, Bausch found her vocation to be fulfilling and wanted to continue working in an environment dedicated to people with HIV and AIDS. But when she graduated from Truman in 1991, there weren't any openings for nurses in Unit 371, so she went to work in the HIV-AIDS unit at the nearby St. Joseph Hospital, which had been founded by the Daughters of Charity of St. Vincent de Paul, a Catholic organization ( and which is now owned by Resurrection Health Care ) . As with Unit 371, Bausch discovered that many of her co-workers in the HIV/AIDS unit at St. Joseph were gay and that they wanted to provide the same type of compassionate care for AIDS patients that Illinois Masonic had become known for.
"The Daughters of Charity were actually very, very supportive of our mission there," Bausch said. "In fact, they sponsored us in the Gay Pride Parade twice. Once, we had T-shirts made up that had the big AIDS ribbon on the front and it said, 'St. Joseph Hospital—Caring for Our Community' on the back."
The Daughters of Charity supported the mission in other ways as well, inviting community partners to help bring the outside neighborhood into the unit and offering spiritual support geared towards LGBT patients. "Ann Sather [ restaurant ] used to send cinnamon rolls up once a week," Bausch said. "And the gay papers would drop off copies of the paper up on the unit. And they were fine with that. They provided a worship space for an ecumenical worship service that was geared toward gay people. They would have a program for World AIDS Day. And they were just in general very supportive—they didn't mind us being out or anything up there. They were quite cool with it."
Bausch worked at St. Joseph until 2001 when she was diagnosed with multiple sclerosis. "Then, of course, about that time, the protease inhibitors came on the market and people [ with HIV and AIDS ] who tolerated drugs were, in general, doing better," she said. "And now, it's largely treated as a chronic illness. But in the early days, it wasn't uncommon for people to come down with PCP [ pneumocystis pneumonia ] , discover they were HIV positive and then die—like, the first time they got sick."
But Bausch's concerns went beyond just the health of her patients. "We had some cases where we were trying to preserve privacy for a patient, so you can't be completely honest with their lover about what's the matter with them," she said.
"We had one example where we were bringing a patient up the back door and he had a very common last name and a common first name, too," she said. "And we didn't put two and two together until somebody saw him and said, 'Oh my god, we can't admit him to this floor!' because his lover was a nurse on the other unit.
"And so we were like, 'We've got to get him out of here.' My friend was admitting him and was on the elevator with him, getting him a room on a different floor. Then, his girlfriend gets on the elevator and says, 'Hey, why were they admitting you on 11?' And he says nothing; he's just shaking his head. And she turns to the other nurse and goes, 'Why were they admitting him on 11?' And she goes, 'Well, he's going to 8 now.'
"We had a lot of cases where you want to protect the privacy of the patient but you also wonder about the safety of their loved ones, too," Bausch said. "But it's true—people will lie to have sex."
"They'll say amazing things," she continued, laughing. "They'll say they're HIV negative, they'll say they're on birth control, they'll say they love you."
But she also saw evidence of bravery in the face of rejection and judgment. "I had one patient that actually had the nerve to have 'HIV POSITIVE' tattooed just below his belt line so that there would be no ambiguity," she said. "Anybody playing with him would have to know."
"Those were strange days," she said. But in addition to struggling with the potential ramifications to sexual partners that could result from the necessary privacy code, Bausch and her coworkers also found it difficult to deal with the helplessness prevalent in the medical community at that time.
"In the early days when we really didn't have much in the way of drugs, people would come in with very low T-cells and repeated bouts of pneumocystis or PCP or thrush, all these opportunistic infections that are typical of low T-cells," she said. "And sometimes, they couldn't get home health for a lot of the medications that they had to be on. For PCP, it was a 21-day course of Bactrim, so sometimes, they'd be in the hospital for the whole three weeks."
"So, yeah, we would get to know them and their friends and their family," Bausch said. "And a lot of them, they'd be in and out and in and out and in and out until they finally passed away. It was just a time where people's T-cells would be hovering around a hundred for a year or two years at a time and then they'd finally succumb to something.
"Nowadays, I think if people tolerate the drugs, they can usually keep their T-cells up around four-or-five hundred. And that's usually enough to stop them from coming down with something fatal."
So how did she cope? "I ate and drank a lot," she said, laughing, but then grew quiet. "It was hard. I mean, we used to have a calendar and we'd write the names down of people when they passed away, you know? Sometimes, there were some months where we'd know, like, 50 or 100 people that died.
"It gives you kind of a perspective about quality versus quantity of life. And I wouldn't say you ever get blasé about death, but you really do come to understand that being dead isn't the worse thing—that there are worse things than being dead. It was hard."
Ironically, after helping so many with HIV and AIDS for so many years, Bausch's own health challenges stem from her own T-cells.
"People joked when I was diagnosed [ with multiple sclerosis ] that the best treatment for my MS would be to come down with a good case of HIV," she said, "because what happens with MS is your T-cells attack the myelin—the coating of your nerves—and they cause the nerves to basically burn out because their insulation is gone. They short out, sort of the same way that your wires would short out if the insulation came out of your wires.
"And so, actually, it's my T-cells that are causing my problem. Kind of weird, because 'no T-cells' is the problem with HIV, you know?"
Because she had already experienced significant symptoms by the time she was diagnosed, Bausch, who is partnered with a woman, stopped working almost immediately and applied for social security. Her years of working in healthcare proved helpful in negotiating her way around what many have discovered can be a frustrating system for those without medical insurance.
"Probably 70 percent of people who apply for social security disability do not get it the first time around," she said. "And the reason for that is because most of them are working when they apply for it. It's hard to convince people that you can't work when you are working," she added with a laugh.
Bausch was accepted, but still faced social service challenges. "You get on disability and then you still have to wait two years before Medicare kicks in," she said. "So I went to Cook County [ Hospital ] . Thank goodness we have the county system here, because basically, people in Chicago do have free healthcare—it's not always the most convenient thing but at least it's available to you.
"I hooked up with them for my drugs. And also, the drug companies have a compassionate use protocol, so because I don't have money to pay for the injectible—which is $1,700 a month—they provided it to me for free."
But because of her medical industry experience, Bausch also knew she'd have to engage in a lot of bureaucratic legwork to discover lower-cost and free options for her care.
"You have to know about these programs and you have to be proactive in navigating the healthcare system yourself," she said. At one point, when Bausch required a cystoscopy, she called several offices to compare prices and discovered after many questions that different rates were charged depending on the patient's insurance company or—as in Bausch's case—lack of insurance.
"I finally just said to one place, 'I'm not going to buy as many of these things as Blue Cross Blue Shield buys. But at the rates you're quoting me, I'm not going to buy any of them.' So she [ the office assistant ] said, 'Well, we'll give you the price that we give Blue Cross Blue Shield if you pay it up front.' And I said, 'Well, now you're talking!'
"If you don't know that you can negotiate with the healthcare system like this, you don't," Bausch said. "I mean, most people just pony up the bucks—whatever their doctor tells them they owe, that's what they pay.
"And some procedures are much more expensive if they're done in the hospital than if they're done in the doctor's office. And a lot of people don't know that either."
But she doesn't believe that doctors or their administrative aides purposely hide the information from prospective patients.
"It's kind of off their radar, too," she said. "When you think about it, we require a lot of our doctors. I mean, not only are they supposed to know all this medical stuff but they're supposed to know how to run a small business too? And they're also supposed to navigate the government regulations about safety, confidentiality and the pricing codes for the DRGs ( diagnosis-related-groups ) . It's very difficult for them. And so I can't necessarily blame the doctors for the mess that is the healthcare system."
This story is part of the Local Reporting Initiative, supported in part by The Chicago Community Trust.
