Live Through This
Adrian Pope has waged a long and lonely battle against bigotry, isolation and a dreadful disease.
In 1984, Adrian Pope started a group to help victims of a strange new disease. Soon, he became his own client.
By DANIEL GREENE SMITH
As Adrian Pope tells it, "everyone was terrified of Jerry." The doctors, nurses and technicians who entered his room in the intensive care unit of UW Hospital wore masks, gloves and triple layers of protective clothing. Jerry's food trays were destroyed after use. His primary physician would inquire into how he was feeling from the doorway, afraid to even enter. It was 1984.
"Jerry had a disease that killed its victims in about six weeks--that seemed to eat people from the inside out," says Pope, then a monitor technician at the hospital. "No one knew exactly how the disease worked, or how contagious it was. Everyone knew it was fatal and they didn't want to be exposed to it."
Pope got to wondering what it was like for Jerry, being attended to by people in space suits. One day he asked him, "How long has it been since you've seen someone's face?" Jerry, who was connected to a respirator, couldn't speak. Pope took off his masks and his protective gloves. "See, there's a person right here." Pope then held Jerry's hand and reassured him. For the next several hours, as the respirator kept Jerry breathing, Pope and Jerry talked, with Jerry gesturing responses.
Jerry was the third patient Pope met who suffered from this strange disease, which had only recently been named: Acquired Immune Deficiency Syndrome, or AIDS. The other two men were Paul and Mark. Pope saw that it was a terrible disease not just because of what it did to the body, but because of how it made people behave.
Paul's family, for instance, blamed his partner. "Can you imagine living through that?" asks Pope. "I don't think Paul's family even allowed his partner to go to the funeral."
Back then, Pope recalls, "people were talking about the disease being the wrath of God, or somehow thinking that the disease was the fault of gay men. I remember an interview I heard on the radio with a physician who was recommending branding everyone who had AIDS on the forehead, the arm and the rump, as if people with AIDS were infected animals."
It was this stigma, as much as the disease itself, against which Pope rebelled. "I just knew in my gut that this was wrong, this was all wrong," he says. "I didn't see anyone to blame, what I saw was people dying. After seeing Paul and Mark die, I promised myself that I wouldn't let any one else die like they did, isolated like that. Of course I had no idea what it would mean to keep that promise back in 1984."
And so Pope approached his boss at UW Hospital about creating some sort of program for victims of this new disease. She gave him unqualified support. He spoke to Jerry on his hospital bed and asked what he thought about the name Madison AIDS Support Network. Jerry signaled thumbs up. That day MASN had its first volunteer, Adrian Pope, and its first client, Jerry, a man who was dying of AIDS.
Pope describes his typical day back in the '80s, after the founding of MASN. "After an 8-12 hour shift at the hospital, I would go visit patients with AIDS and their loved ones. Sometimes, I would take someone outside so they could sit in the sun. Just sit there and talk. Other times we'd have support meetings.
"The main thing to me," Pope continues, "is that people feel like they're a human being--that they're alive, that they're someone, and that there are people around them who think they're a person."
One day Jerry, no longer bed-ridden, tracked Pope down, ecstatic. "His face was all bruised, and his front two teeth were missing," recalls Pope. "I thought that he had been beaten. Instead Jerry told me how he had been able to get out to the grocery store by himself for the first time in at least six months. He had a coughing fit in the store, blacked out and smacked his face on a shelf, knocking out his two front teeth. But Jerry saw his missing teeth and bruises as a badge of honor: He was not only living, he was alive."
Adrian Charles Vincent Pope, whose nickname is "Chaz," was born 45 years ago [BD-2/19] in Arena, Wisconsin. He grew up on his family farm there and thought for many years that he would become a farmer himself. After attending the UW-Madison, he worked as bartender before landing his job at UW Hospital and Clinics. Today, Pope works for OutReach, a local support agency for people who are gay, lesbian, bisexual or transgendered.
As a gay man, Pope has long had to live with bigotry. As a medical technician, he understood better than most people what AIDS was about. But nothing in these experiences prepared him for the journey he was forced to take.
Six months after Pope started MASN, he noticed he had some symptoms himself. He began to believe that he too had AIDS. His doctor didn't think so, and diagnosed him instead with a disease whose name Pope can't remember--"hemo-something," he says, laughing. "There were only 30 other people in the United States with that diagnosis."
Pope asked his doctor to test him for AIDS, but the doctor wouldn't. He went to another doctor, who ordered the tests, saying the results would be back in a week. But while Pope was pretty sure he had AIDS, he wasn't as prepared for the news as he thought.
"The week of waiting and the news was hell. I took my friend Will Handy with me. He took notes from my meeting with the doctor and typed it all up and sent it to me."
Handy had told Pope that he wouldn't be able to remember anything from the meeting. Pope thought he would, but it turned out that Handy was right. "When the time comes you walk in and you sit down and the doctor says, 'I'm sorry, you have AIDS.' Everything blurs."
Pope went home and for several days just stared out of his window and cried. "I was figuring it was going to be six weeks, maybe a year if I was lucky. I didn't figure there was any point to worry about starting a savings account or a life insurance policy. At the time, there was nothing anyone could do."
The irony still amuses Pope, that six months after starting a support group for victims of AIDS and its precursor, HIV, he became his own client: "Isn't there a law against that somewhere?" While Pope jokes about it now, back when he was first diagnosed he expected that he would be dead within the year. Yet 16 years later, Pope is living well.
Pope credits Dr. Dennis Maki, the UW's head of infectious diseases, for saving his life: "If it wasn't for him I wouldn't be around." And Pope goes on to describe some of what he's been through.
In 1984, there weren't a lot of medical treatments. Some thought that removing the spleen slowed the disease; others didn't. Pope researched the matter and talked it over with Dr. Maki. They agreed it would be best to have the surgery.
Then, in 1985, the AIDS virus somehow crossed the barrier between the blood and the spinal fluid, and Pope says Maki told him, "It's time to get your house in order. I don't think there's anything we can do." But neither Pope nor Maki gave up, and Maki got him into a research program that was testing AZT on people who were terminal.
"The drug," Pope recalls, "was incredibly toxic. I was nauseous all the time." Pope now takes what's referred to as "the cocktail"--a combination of three drugs that has proved to be effective in helping people survive with the disease.
There were two other close calls, where Dr. Maki told Pope to prepare for the possibility that his death was imminent. But Pope survived--in large part, he thinks, because of his attitude.
"If I became bitter or self-pitying I doubt I'd be alive," he says. "I try to keep stress out of my head. If I let the little shit bother me it will kill me. I've lived with the meanest virus we've seen in decades. What can anyone do to me? What could happen during the day that would be so important that I would allow it to stress me out?"
Despite the progress in treating AIDS and HIV, Pope thinks the underlying issues--the bigotry and rejection--have not changed enough.
"People don't realize that no one wakes up in the morning and says, 'Gosh I think I'll become gay.' It's difficult to be gay, people shun you, hate you, stay away from you. No one chooses it. It's something that you're born with that you accept, not something you decide." No one chooses to have AIDS, either, but "somehow gay men were blamed for the disease and sometimes still are."
Pope recalls one famous case involving a young boy who contracted AIDS from a blood transfusion. "When Ryan White died from AIDS in 1990, the whole nation seemed to mourn. They should, it's horrible. But why is his life more valuable to the nation than the thousands of people who've died of AIDS? Because many of the people were gay, somehow their lives were seen as being not worth as much."
FOCUS ON LIVING
From its modest beginnings in 1984, MASN (now simply called AIDS Network) has become a nonprofit corporation with an annual budget of $1.6 million, 26 employees, 120 volunteers and an annual caseload of 350 clients. The group now serves 13 counties, and the services it provides have changed. (Another group, the AIDS Resource Center of Wisconsin, covers the rest of the state and has recently set up operations in Madison.)
"Now our focus is more on living," says AIDS Network representative Susan Gillingham. "There are a lot more treatments now, and people can live with AIDS and manage it, although it's very challenging, I can't imagine what [Pope] had to go through when there wasn't the hope that there is today. Today people can live with the illness."
AIDS Network is still fighting the epidemic, reports Jim Stodola, the current program director. "In 1999, 52% of new HIV infections statewide were among blacks and Latinos," he says. "In the early 80's there was a lack of awareness about AIDS, and that sped up the spread of the disease, we're seeing that same lack of awareness now in the minority communities…We're very concerned about it." He says, and points out that last year there was a 14% rise in HIV infections state wide, the first rise in new infections of HIV since 1993. Moreover, he says, "20% of the people who currently have HIV are straight." The fact is, "AIDS doesn't care about your race or sexual orientation."
According to Stodola, 420,201 people have died of AIDS in the United States during the past 16 years. That's almost twice the number of Americans who died in battle in WWII.
Groups like AIDS Network have been instrumental in education, prevention and support."Our purpose is to form partnerships with other agencies and groups," says Stodala. "Only by working together can we fulfill the hope of forming healthy communities and healthy lives."
Pope also disclaims credit for the success of AIDS Network. "There were and are many great people who made and make it work everyday." In particular, he cites one of the group's first recruits, Will Handy: "If it wasn't for him, I don't know if the growth would have been as substantial or as fast."
Handy and Pope met in 1984. "I wanted to get involved and I thought there would be some organization," says Handy. "Well, Pope was the organization." And the disease it dealt with was cloaked in fear and uncertainty.
"In 1984, there wasn't even HIV yet," notes Handy. "The way people found out they had it was by coming down with an opportunistic infection that often killed them." In these early days, he recalls, "We all wondered if we were risking our lives by supporting people with AIDS, but it was [clear] that something needed to be done."
Later, Pope worked on the burn unit at UW Hospital, as Handy recalls: "Pope has incredible resilience and humor. When he worked on the burn unit he was especially good with children. He'd put pajama bottoms on his head and become the burn unit bunny and hop around with the pajama bottom ears hanging off his head. He made the children laugh so hard they forgot about how much pain they were in."
Every year, AIDS Network gives out the Pope Handy Award for volunteer of the year in honor of its co-founders. In the 11 years that Pope worked for the group, he never received a dime. "I've gotten more than anyone could ever pay me from those years," he says. "The experiences, the people."
And yet, in 1995, Pope quit volunteering for the organization. "I was tired of having all of my friends die," he says, crying. "I've thrown away entire address books because everyone in them was dead."
Asked how many he's known who have died, Pope says he's never tried to count. "If I did it would diminish them, the experience what they went through, their lives. You don't put a number on the death of a human being. It's not measurable." Approximately? "I don't know. Hundreds. I've never counted and never will."
Pope looks down, leaning his forehead into his hands. When he looks up and takes off his glasses, his eyes well up again. "Sometimes, I can't help remembering--people's faces, their sayings or expressions, how they died. One day a year I let myself just sit and remember everybody, faces, names. It comes back, and I let it all out. But sometimes it comes back when I don't expect it, and I have to lock myself in my office or apartment for awhile."
Pope reaches for a box of Kleenex. "It comes back unexpectedly, like now."
After five years as a manager at Fyfe's Corner Bistro, and a hiatus as a tech in a paging and message center, Pope is back in the helping business. He's re-enlisted as a volunteer for AIDS Network, and he works as program director at OutReach.
The group's mission statement commits it to being a "vibrant and inclusive agent dedicated to positive change for the Lesbian Gay Bisexual and Transgender communities by providing services which nurture strengthen and celebrate our communities, educate and inform ourselves and the public, and advocate for social justice."
OutReach has more than 150 volunteers, one of the Midwest's largest lending libraries (3,500 volumes) and it produces a directory for LGBT individuals and friends. In one month, there are as many as 57 support groups, peer counseling groups, AA meetings and gatherings at the OutReach office on Williamson Street.
On a recent Saturday afternoon, Pope is training a new volunteer at the OutReach office. He moves quickly and efficiently from phone to bookshelf to computer, speaking in an even baritone, being careful to establish eye contact with the new volunteer. Pope is relaxed, joking with the volunteer and people who come in.
Pope starts talking about fake suicide calls to OutReach. "I was pretty sure they were teenagers," he says. "They think it's funny to call up a 'queer' organization and do something like that. It's disturbing."
In the past, OutReach has reached out to the police in response to harassing calls. "People who want to kill themselves do call," says Pope. "We want to leave our phones open for them or other people who need help."
A sign on one of the bookshelves proclaims, "We tolerate and accept heterosexual lifestyles." Explains Pope, "It's strange to see a sign that says people must accept you, isn't it?" He raises his eyebrows, looking over his wire-rimmed glasses with a knowing look on his face. "We see signs like that all the time. You know, 'We don't discriminate on the basis of...etc.' At least when we say it here at OutReach, you know we mean it. "
Pope says that in many of the places he's been, signs or no signs, "People remain prejudiced and cruel, often behind your back, but you know it, you can feel it."
The phone rings. It was from a gay man who wanted to take his cat to a vet that was LGBT friendly. Pope opened the group's directory, found a vet's name and number and read them to the man. "We want to spend our money in places where we're welcome," says Pope. "The directory is a phonebook of businesses that we as members of an LGBT community can feel comfortable going to and spending our money."
Last year OutReach produced 5,000 copies of these directories. "They're free to anyone who wants one," says Pope. The directories contain color advertisements and art as well as comprehensive lists of every kind of service imaginable, from flower shops to dentists.
At 3 pm, Pope stops and pulls a small white box out of his pocket. "Med time," he says, smiling. He is on the cocktail, a combination of three different drugs that fight the AIDS virus. "Med time" happens every day at 7 am, 3 pm, 7 pm and 11 pm.
Pope can't eat for two hours before he takes a dose, or one hour after. If he does, the food would dilute the poisons that fight the virus, and the virus would develop a resistance, and in a short time there would be nothing anyone could do to save his life.
The meds make Pope nauseous. "They were initially developed as a chemotherapy," he says, explaining how his days are punctuated by eating and not eating, meds and nausea. Pope sits in his office after taking his dose and drinks a glass of water. He picks up a stuffed Kermit the frog in a ballerina dress that sits on his desk and jokes, "How are we feeling today?"
Pope says his work with OutReach involves him in bringing about positive change, as did his earlier work with MASN. He talks about the sense of isolation and suspicion that LGBT people can feel, and how he's glad to be able to fight against that.
He's certainly qualified, having endured prejudice for being gay and an AIDS survivor, lived through hundreds of deaths of friends and loved ones, volunteered to help people living and dying with AIDS without ever being paid for it. Does he realize that many people could never have gone through what he has gone through?
"I didn't know I could go through all this either," he answers. "I just did what was in front of me. My choices are help people or go nuts not helping people."
Cutline: "I didn't see anyone to blame, what I saw was people dying.