Reporters on 60 Minutes have speculated about the most intimate details of her life, her medical case has been the subject of federal investigations, and how she contracted HIV from a dentist back in 1988 remains one of the mysteries of viral science. Meet the woman that medical literature refers to as Patient E, a nice lady living quietly on a Northern Michigan county side road who is determined to protect you and the rest of the world from a disease that’s killed more than 25 million people since 1981.
On November 18, 2009, at daybreak, Roscommon High School appears a safe haven. No clouds mar a pale dawn, and the ground sparkles as the sun illuminates a heavy frost that settled in during the night. Litter doesn’t tarnish the school lawn. Graffiti doesn’t color the school walls. A hardwood forest wraps the building in an embrace that makes the school seem well protected against the challenges facing so many schools today.
But Lisa Shoemaker, one of the most famous disease victims in United States history, is here today to tell senior students in this quiet Northern Michigan town that safety can be an illusion, especially when it comes to Human Immunodeficiency Virus, more commonly called HIV, the virus that causes AIDS. She hopes that by talking to kids while they are still young, her message will stick: for the rest of their lives they must be vigilant and steer clear of behavior that leads to infection, regardless of where they live. The fact that she can share this message in Northern Michigan, the place she herself came to draw power from the land and water, and to heal after a Florida dentist infected her back in 1988, makes her work all the more poignant.
At 9:15 a.m., the seven boys and seven girls in Nikki Petrosky’s Life Skills class are settling into their seats, while Shoemaker stands at the overhead projector shuffling through her transparencies one last time. She’s given this presentation about HIV safety dozens of times, and has made the journey to Petrosky’s class every year for eight years running.
Whomever the students might have been expecting to see when they envisioned a nationally renowned HIV advocate—a woman who had traveled to Washington, D.C., once a month for four straight years to help shape HIV policy for the president—the image probably didn’t match the person they are seeing now. Shoemaker looks like someone who could be their mom, or an aunt, or maybe a lunch lady: a plumpish, mid-50’s woman dressed in light-blue jeans, darker-blue denim shirt, hair pulled back into a quick ponytail. Her Harley Davidson jacket with “Alaska” embroidered in big letters across the back hangs on a nearby chair.
Shoemaker is straightforward about the disease—not gutter talk, but not shying from the realities either—and this, combined with her neighbor-lady mien, is what seems to resonate with the kids. Getting started, she asks if somebody is willing to read a slide she lays on the projector. A girl raises her hand. She reads the opening paragraph about HIV and then arrives at a list of the four bodily fluids that can communicate the disease: Semen, vaginal secretions, blood, breast milk. She hesitates before reading the first possibility, hesitates longer at the second, but then continues. This kind of frankness, pushing into the discomfort zone, is what Shoemaker feels we need if our culture has any hope of meeting the national goal of an HIV-free generation.
Teacher Petrosky has evidently prepped her kids on several points already, so when Shoemaker asks, “What percent of infected people know they are infected?” A boy in a blue sweatshirt answers, “a third.” When she asks why doubling up condoms doesn’t increase protection, another boy says, “friction.” “Exactly,” she says. “You put two condoms together and they’re just going to blow.”
“Why is alcohol a risk factor?”
“You do things you wouldn’t normally do,” a girl says.
“At the end of the term, when my kids fill out their class evaluation, they’ll say, ‘I like you Ms. Petrosky, but my favorite part of class was when Lisa Shoemaker came in,’” Petrosky says.
Shoemaker owns a house in Empire, but considers her boyfriend Todd’s house a second home. It stands alongside a quiet Benzie County two-lane, and out back they keep three miniature horses in a paddock. They own 11 cats, and nine of them live in the house.
“They’re all rescue cats,” she says, as she picks up a black and white kitten that’s maybe five months old. “Somebody saw this one lying on the side of the road. At first they thought it was a piece of paper.” The cat-finder dropped the kitten off at Shoemaker’s house, and she brought its temp back up, got some fluid into it. Soon it was playing like normal.
Living things discarded but then made whole is a notion that Shoemaker understands.
Besides cats, the other obvious presence in the living room is Harley logos. She and Todd ride a Road King, and the living room is a shrine: Harley signs (Harley Country), a Harley license plate (Rd-King), Harley models on the fireplace mantel. Shoemaker describes herself as a rebel, so Harley fits.
In most ways, Shoemaker lives an anonymous life. But in one way she is famous, and became famous along a path that nobody would want to follow. Back in 1988, she was living in Florida, had two abscessed teeth and needed a dentist. Sorting through a Welcome Wagon bag, she came across a refrigerator magnet that said “Pain free dentist” and had a phone number.
“I hate shots and needles,” she says. So “pain free” convinced her to drive with a friend to the dentist’s office. “It was clean, there was children’s art on the walls, and the girls there were really friendly,” she recalls. “But the dentist kind of gave me the creeps. He was like a robot. No emotion at all.” Still, Shoemaker visited Dr. David Acer about a dozen times.
“As time went on, he came to have this smell about him, and it reminded me of when I worked in a veterinary clinic and you always knew in the morning when an animal had died the minute you opened the door, and that’s what he smelled like, the smell of dying.”
In the late 80’s, HIV and AIDS were consuming the public consciousness, and the government was making initial efforts to educate the public. Shoemaker remembers reading a fact sheet by then-Surgeon General C. Everett Koop that defined at-risk groups. She checked it—not gay, not a prostitute, not a needle user, not a hemophiliac—and threw the sheet away.
Not long afterward she found her fiancé’s diary, and it described having sex with multiple partners, including men. “I thought, He’s putting me at risk, I need to get tested.” She also convinced her then-fiancé to get tested. His test came back negative. But Shoemaker’s was supposedly lost, and the clinic checked her again. Back then, the test took six to 12 weeks for results. “It was a terrible time of waiting,” she recalls.
When the second test came back, it showed positive, and in the meantime, the clinic said they’d found the original as well. It also showed positive. The experience drives one of her key messages to this day: “Your partner has your life in his or her hands. Are they being faithful? Are they being honest about their orientation? About their past?” she says. “Get tested annually. Know your status.”
Shoemaker became so depressed by the prospect of death by AIDS that the night of the diagnosis she decided to kill herself. She took three bottles of medicine—though she doesn’t recall exactly what kind—drank a bottle of Jack Daniels and a case of beer.
“I threw a Bible across the room and said, ‘God if you are there, show yourself now.’” She passed out, knowing that the end of her life had arrived. She considers it a miracle that she awoke in the morning, that God did indeed show. “I didn’t even have a hangover,” she says, and she adopted a Christian belief.
Shoemaker had HIV for two years without knowing how she became infected, when one day her dad read an article in The New York Times about a Florida woman who was suing a dentist’s insurance company claiming he had given her HIV. Shoemaker’s dad asked Lisa the name of her dentist in Florida. “I said, I wasn’t sure, Aker, Acer, Acher?” she says. The name matched.
Eventually the Centers for Disease Control confirmed that Acer spread the disease to six patients. “Who knows how many others there might have been,” she says. The dentist died in 1990, and many of his records were destroyed in a fire. Only two of the known infected patients are alive today. Shoemaker was 32 when she was infected. The other surviving patient was 18.
Shoemaker filed suit as well, and she and the other victims believe the insurance company tapped their phones and spied on them. The company suggested that all the victims must have had sexual relations with the dentist. “We didn’t do anything but sit in a chair,” Shoemaker says.
Pushed into the national spotlight, she also had to be wary of groups who wanted to use her to further their own agendas. An anti-gay group wanted her to be a spokesperson. “I told them I didn’t want any part of that—this is about protecting everybody,” she says. Some people wanted her to cooperate on a book about the dentist being a serial killer. “But I didn’t, and still don’t, believe that,” she says.
In 1994, 60 Minutes even produced an episode asserting that the CDC ignored behaviors of the victims that could have led to infection from other sources, and included discussions about the victims’ sex partners. They portrayed Shoemaker as a carny because she had not long before traveled the carnival circuit with a man who operated a popcorn and cotton candy trailer. The CDC critiqued the 60 Minutes report and found it was seeded by insurance companies who took court testimony out of context, and the show’s assertions were discredited. The 60 Minutes’ allegations that she had lied infuriated Shoemaker.
“I had been completely truthful, achingly truthful. I had to reveal things in public that nobody should ever have to reveal,” she says. “When I saw that show, I realized I had to stop being a victim, and I became a warrior.”
But still, Shoemaker had not shaken the notion that her life was simply a matter of waiting to die. So later in 1994, she gave away almost all of her belongings and moved North to a rental house in Empire, near the Lake Michigan shore, where she had vacationed as a child.
“Somebody had told people a lady with HIV was moving into town,” she says. But instead of shunning her, the community welcomed Shoemaker. She still enjoys small town life, “like how the people in the stores know me and make me feel cared about,” she says.
Living on disability payments, she first spent her days driving around the area with her cat and walking the beach along the dunes. “I always had a towel and a swimsuit with me. It was a dream,” she says. “I had always loved Empire and felt rejuvenated by the lake.”
Not in an epiphany, but slowly over the months, a realization grew within Shoemaker: she was going to live. The rental she lived in went up for sale, and she bought it with the settlement money she won—it was just enough. Even the scents around her house affirmed the notion of living. The way the smell of cedar and pine and earth came to her when the sun warmed the ground. The way the house inside smelled vaguely like an antique store. “Not strong, just enough to feel comfortable, lived in,” she says.
She started going to garage sales to fill her home, each purchase of a used thing a tiny celebration of the fact that she was alive and looking forward. “Everything I needed I would find at garage sales,” she says. “Like I wanted a really good can opener. We had a certain kind when I was growing up that was from Germany and really well made. And I went to a garage sale, and there one was, like new, and I thought, Thank you, God.”
Once, when a contractor friend was tearing out her bathroom wall, he found a penny dated 1956, her birth year. “To me, that was a sign that this is meant to be my home.”
Shoemaker became involved in HIV and AIDS activism. She joined the board of Children’s AIDs Fund, and is now vice president. In 2002 the Bush administration invited her to a four-year term with the Presidential Advisory Council on HIV and AIDS, which put her at the table with pharmaceutical company CEOs, top AIDs researchers, gay activists, congressmen, and leaders of the Christian right.
“I thought, Why am I on this board? What do I have to contribute?” Shoemaker says. But at the first meeting, with 35 people in the room, arguments erupted—people pushing various agendas. “I thought, How are we going to get anything done if we are arguing at the very first meeting?”
Shoemaker asked for the floor, stood up and said, “When we are in this room we leave all our other hats outside, and we are all wearing just one hat, and that is to protect people from HIV, or this just won’t work!” The room went silent. “I knew then why I was there.”
Shoemaker also began presenting around the nation. The fact that she was not responsible for contracting the disease and was a Christian gave her a pass into conservative churches and schools, where HIV speakers are controversial.
In the medical literature, Shoemaker is Patient E, a pseudonym designed to provide anonymity, but that’s a quaint notion, given that she has revealed nearly every aspect of her private life. If you search Google for “Patient E HIV dentist” and click the top hit, you will read a 1991 CDC report with these passages:
“Patient E, a young woman, contacted CDC after the initial report of a possible transmission of HIV in this dental practice. She denied a history of transfusion, receipt of blood products, or injecting drug use. … She was seropositive for antibody to HIV when first tested in October 1988. … This is the only investigation in which transmission of HIV from an infected health-care worker to patients during invasive procedures has been strongly suggested. Neither the precise mode of HIV transmission to these patients nor the reasons for transmission to multiple patients in a single practice are known.”
That last idea, the fact that nobody could determine how the dentist transmitted the disease, remains true to this day. Shoemaker has her theory: the dentist pricked himself while giving an injection, but was unaware because of nerve and mental damage from the advanced stage of AIDs. But she doesn’t dwell on the uncertainty, and is just grateful to be alive. She credits her innately strong immune system and paying close attention to her medications.
Shoemaker continues sharing her story, reminding students and anybody who will listen that HIV demands vigilance, certainly where risk factors are evident, but even in circumstances that appear safe. “People are still getting infected by this and there’s no excuse for that,” she says.