“It’s Not Over”: Lessons Learned on the Frontlines with AIDS
December 1, 2015
The AIDS pandemic first made headlines in the U.S. in 1981, though, at the time, the words “AIDS” and “HIV” had not yet been coined. Today, a new generation has grown up in an entirely different world, a world in which many see AIDS as a manageable, chronic condition.
We recently got the chance to speak with Maxine Thome from the Lansing Area AIDS Network, an organization providing services for those living with AIDS in Mid-Michigan. As a social worker and therapist, she has been on the frontlines against AIDS since 1982. She explained why, even today, in spite of significant progress made against HIV/AIDS in the last 30 years, this is not a time for complacency.[/vc_column_text]
Whole Health Blog: What was the climate like in the 1980s—before people even knew what AIDS was?
Maxine Thome: When AIDS first surfaced, it was called GRID [gay-related immunodeficiency]. There really wasn’t any treatment, and people were dying from secondary events, the opportunistic infections.
It was sad because of the isolation people were being put in. It was so new, everybody was fearful. There were comparisons to the need for people to be isolated together somewhere, almost like a leper island or a leper colony.
WHB: When was this?
MT: This was probably ’82 or ’83.
In my private practice, I started seeing people with AIDS, and they were getting sick. Many of them were getting sick and dying very quickly. People were afraid to treat them.
People were afraid to touch people with AIDS.
The myths were strong.
The belief that bodily fluids, including sneezing, coughing, tears—it was all considered putting people at risk.
Hospices at the time and nursing homes did not want to accept anyone with AIDS for fear of contagion. We were able to convince Hospice of Lansing to start doing home care for people with AIDS.
WHB: Are there any memories from that time period in particular that stand out for you?
MT: I remember going to the hospital to visit one of my clients who had Kaposi sarcoma, which is a cancer that formed lesions on the face, and pneumocystis pneumonia. I went in the hospital to see him, and they had me gown up. I remember going over and taking his hand. It felt so strange because I had gloves on and had a mask on and was just completely … I looked like I was headed to outer space.
He said, “You know, people are afraid to touch me.” At that point, I said, “OK, I’m not afraid to touch you.” I took off my gown and my mask and we hung out together.
I believe he died not too long after that.
WHB: Wow. That’s really powerful.
MT: Another one of my clients who had the opportunistic infection that affected vision painted a picture of what it looked like to look out of his eyes. I have a copy of it somewhere in the house. It was such a changing event for me because, even though his vision was going, he was actually able to draw this representation because he wanted people to understand what it was like to be on the inside looking out.
I went to so many funerals between 1983 and the mid-90s. People were lucky if after diagnosis they would live a year.
Then they came out with the drug cocktails, so folks were wearing watches with timers because the “cocktails,” as they call them, were so massive and they had to remember when to take which medication throughout the course of the day. Sometimes people were taking 10, 20 pills at various times and in various combinations throughout the course of the day.
WHB: That many pills all at once?
MT: They’d be broken up. That was also early on in the time that people were cashing in their life insurance so they could pay for medications and they could live, because people were losing their jobs. People were cashing in their life insurance and then life expectancy, it seemed all of a sudden, began to change, and so people were living longer but they’d already cashed in their life insurance.
They weren’t being taken back, necessarily, into their places of employment. It was just awful. They had no life insurance. They had no benefits. They had no medication.
People were losing their houses. Families didn’t want people with AIDS moving back home very often because everybody was afraid. People were afraid they would get it.
WHB: Can you contrast this with today’s generation?
MT: Now there are young people who didn’t live through the really ugly, scary times, so there’s a sort of a sense that it won’t happen to them, that “No one gets AIDS anymore.” That’s the philosophy, so more youth are taking risks.
The age of infection has dropped to a younger age. What we’re seeing is either people are much older and are now finding out that they have HIV, or they’re young, high school, early 20s, and finding out they have HIV, because the older people never were tested and the younger people are not practicing safe sex.
WHB: What’s important for people to realize today?
MT: That it’s not over.
The treatments, although they’re better and T-cell count is being lowered … have there truly been cases where people have been cured?
If the answer is yes, very, very few, so it’s classified as chronic disease. There’s a higher incidence of diabetes for people with HIV, and the opportunistic infections, although some of them have calmed down (not all of them). So it’s not over and it may never be over.
WHB: Back to the early days of AIDS and GRID, could you talk about some of those outlandish misconceptions people had about transmission and how you worked to educate people?
MT: I think in the early days we were collecting stories and research and doing a lot of the community education. I think that the way we were trying to dispel the myths was by education, education, education.
Testing took off, so more and more people were getting tested in health departments. Educational materials were handed out when you went to get tested. Prevention was being funded. Condoms were being distributed.
There was more and more talk about “you don’t touch someone and get AIDS.” There was more work going into that kind of education.
Yes, unprotected sex is dangerous. Using dirty needles is dangerous. If you have a cut, you should be careful. It was dispelling the myth that if you’re in a room with someone who has HIV and they cough, you’re at risk for catching it. It was also dispelling the myth that if you go into the bathroom where someone is with HIV, you’re at risk for catching it.
WHB: What do you credit the success of the progress that’s been made in both the treatments of HIV/AIDS and also in, to an extent, a lessened stigma?
MT: A lot of the activists. Going back to the early days, ACT UP [AIDS Coalition to Unleash Power] and some of the others, were doing major activities.
The other thing was, back in that time then, people with hemophilia began to contract it through IVs. You couldn’t draw a clear line around the population that was at risk.
Then more and more groups began to come together to advocate for better education, for less fear with people. So the more it spread to different populations, the broader the grassroots effort became.
WHB: How did you find strength back in the early days, at a time when there were people whose life expectancy was a year at best?
MT: I think myself and others would hang together, tell stories. We’d talk about the people we were caring for and we’d just keep moving.
We’d just keep moving forward.
If we allowed ourselves to become immobilized,
people that really needed us wouldn’t
get the help they needed.
WHB: Do you think you were taking care of yourself appropriately at the time or were you just pushing yourself to not stop for a second, to keep going?
MT: I think initially, the excitement about being involved in doing something and coming together and watching it grow, just that kind of effort was invigorating.
There were the little successes that helped, everything from caring for this young man in his home. He had his dog with him, and the dog needed care so you’d take the dog to the vet and bring the dog back. He felt elated that he could stay with his dog and he could get some home care. Is that self-care? I don’t know. We sort of nurtured each other.
The people that we cared for could be really fun, and seeing them just pull some things together in their lives. The families come together. That was kind of like self-care. I was younger then, too.
WHB: What are the biggest lessons that you carry with you today?
MT: I think for me it’s the constant of coming together, forming coalitions, not giving up, listening better, recognizing that different groups can contribute different things, and that we need to be careful about shutting the door because of values or beliefs. Life is fragile and it sure is a lot easier to love and respect and care than it is to hate and isolate.
WHB: Was there a moment when you felt like we’ve made progress, we’ve hit a turning point, and things are going to be OK?
MT: I think some of the panic is gone. Some. But I bet if you, for instance, walk into a place of work or came to your family and said, “I have HIV,” the initial response is still one of stepping back.
I don’t think we should ever think that
this storm is over, because it’s like the
minute you believe the storm is over,
you’re caught off guard.
I think it’s really important to be aware that HIV/AIDS does exist. The virus has morphed. For years, you think that you’re on top of it and then it would come back resistant to whatever the cocktail was or the medication was, and then they find that it had changed some.
I don’t think we should ever assume that HIV/AIDS is not something to be concerned about. My hope is someday everybody will learn to not be afraid of it and to not hate those who have it, not be fearful of it.
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