Lina Brown- The AIDS Epidemic in the United States

My paper was on the AIDS epidemic, particularly in the United States. Several years after my parents, Josh Brown and Patreese Martin, both architects, got married, Josh found out that his dad, Curt Brown, a retired doctor living in Albany, had AIDS. He and Patreese spent the next two years helping Josh’s mother, Ellie care for his dad.
During this time, Josh’s one of coworkers, Bill Blanda and his wife were going through a very similar ordeal. Bill and his wife Beth Blanda found out that Beth’s father had contracted HIV. The two families grew very close due to their fathers’ disease. The two couples were at very similar points in their lives, Patreese and Beth even had their first children weeks apart, they were all in creative fields, and dealing with AIDS in their family. Naturally, they grew very close.



Josh Brown:

My dad contracted HIV through a blood transfusion in 1984. I was 33 when he was diagnosed. He didn’t know he was sick until he discovered he had full blown AIDS September first of 1989. He retired in April of 1989 and was feeling sluggish and tired in the summer of that year. He was admitted to the hospital on September first and they did all these tests and that’s when he discovered he had the virus. In 1984 The AIDS crisis had been going on for about three years, but the majority of the cases were in New York City and San Francisco among the gay population, intravenous drug users, and prostitutes.
I remember my dad talking about the blood transfusion he was going to get. He said there was no chance of the blood supply in central Connecticut was contaminated. He thought the only risk was in the blood supplies of the major cities, but he turned out to be wrong. Six months after he received his transfusion the Red Cross started testing donated blood for HIV. If he’d waited just for the transfusion he might have been okay. I’ve heard estimates that about five thousand people contracted HIV through blood transfusions.
When he retired, my mom and dad moved back to Albany, New York where I was raised. My dad used to tell me funny stories about the clinics he would visit to get treatment. The clinics were filled with prisoners, drug addicts, and other people from the shady types. He was a retired doctor in his late sixties and the oddball of clinic waiting rooms.
Being a doctor, his coworkers were educated about HIV and AIDS. They had to in order to keep themselves protected, so he and mom got a lot of support. Their circle of friends was largely in the health care profession.
AZT was just being developed at this time. It was very expensive and they were still working out the dosage and cocktail to optimize its effectiveness. You would take AZT with six or seven other pills. Most AIDS patients were young, in their twenties probably and were poor and couldn’t afford AZT. So my dad was lucky in that respect. At that time, if you weren’t diagnosed as HIV positive before you had full blown AIDS, your life expectancy was about two years. My dad died two years and three months after he had full blown AIDS. He fit the statistical norm almost exactly.
After two long rounds in the hospital, maybe more, he decided he wanted to stay home. We had a hospice service in mother’s house. He died at home the day before Thanksgiving in 1991. For us, our gay friends were very knowledgeable and had personal experience dealing with AIDS, but most of our other friends had no personal experience. There were a lot of people who really didn’t understand AIDS and what we were going through. AIDS at that time was sometimes referred to as the Gay Cancer and there were only gay people, drug addicts, and prostitutes who got AIDS. There was no such thing as a middle class white collar professional with a family getting AIDS.
I wasn’t open with everybody about my father’s disease. I told some coworkers I guess, and I guess most of my architect friends because there are a fair amount of gay and aware people in architecture and design in general. There weren’t really people I wouldn’t tell unless they were people I didn’t really know very well. It’s a heavy subject, not everybody wants to know.
Magic Johnson announced that he was HIV positive a month before my dad died. Freddy Mercury of Queen died at about that time too. I remember that he announced that he had AIDS in the newspaper and he died the very next day. Rock Hudson was the first big celebrity to announce that he had AIDS. And he was a handsome movie star. The general public did not know he was gay, so that was a courageous thing that he did that brought the epidemic to mainstream media I guess.
At the time, being HIV positive was a death sentence, but with the progress made in AZT dosage management, its no longer a death sentence. Look at Magic Johnson; he’s a commentator on the NBA playoffs. He’s not ostracized and he’s strong as an ox.
The typical symptoms of AIDS are drastic weight loss, low energy, lack of appetite and my dad displayed all of those, I don’t know how much weight he actually lost but it must have been sixty to eighty pounds. He had actually gotten overweight over the last ten years of work because he had a very stressful job. I remember my mom commenting that he looked good. In a sort of sad ironic way he looked good.
He had a hospital bed setup in the living room of their house. My mom would usually sleep on the couch next to him, especially if he wasn’t feeling well that day. One thing that was amazing was my mom’s dedication to taking care of my dad. She managed his medications, rented all the hospital equipment needed for the house and hired the nurses that would come and visit. There was a real high turnover rate of visiting nurses. They were in demand, so they had an attitude they can do a half assed job and it doesn’t matter because they can always get a job elsewhere, but my mom was not going to put up with that. We used to laugh at some of the stories we would hear that the nurses used to tell us. Most were black and lived in the black sections of Albany. When I visited I would drop them off at their house after their shift. Sometimes they would have me drop them off not at their house but elsewhere in the neighborhood.
My brothers and I rotated every weekend driving to Albany to help my mom. It was a five hour drive for us. The saddest part of those times was having to leave my mom at the end of the weekend and for us to do our long drive back to Philadelphia. We did that once every third week or more for two years.
I had a roommate in grad school that was gay and he was distraught over breaking up with his partner. This must have been 1984 in Philadelphia. I remember him saying that finding a new partner would be such a risky and awkward thing, because of the epidemic. At least then, people didn’t know they were HIV positive for a long time. For the gay community it was a frightening time because so much was unknown, and their friends were dying frequently.
AIDS in the US is not on the front burner of contemporary issues thanks to research and all. But for Africa and parts of Asia they are still living in the times of the mid 1980s for the US, the arc of the AIDS crisis. It isn’t as vital an issue here because the knowledge is out there as far as the precautions to take. There aren’t quite the taboos here. In Africa that’s a mark of shame. They are still dealing with a lot of social aspects of AIDS that we’ve mostly gotten past here in the US for the most part I’d say.



Beth Blanda

It was surprising to find out my dad had AIDS, he wasn’t super young, it was mostly happening to young people. It was incredibly sad. We didn’t know he had AIDS for a long time; he had it for about a year until they finally detected it. He and my mother lived on Cape Cod, a pretty isolated place. There was one hospital and was quite the drive.
I’d say we weren’t very open about it. People had weird reactions. Some were polite and understanding, others were just weird and unexpected. It was hard for a lot of people to be sympathetic. Plenty reacted badly, but luckily my husband and I are artists, our friends and we were all pretty liberal, so there were plenty who were supportive. The way my father contracted the disease is pretty a delicate matter, so very few other than the family and our closest friends like Patreese and Josh knew the full story. It’s very difficult when the disease has that kind of stigma surrounding it, not to mention it was pretty much a death sentence. It was a rough time.
At the time my father was sick, I was in the hospital because I was pregnant with my first daughter. Somehow talking to the doctor it came up that my father had AIDS, and I remember him having such a weird reaction. I could tell he was uncomfortable and he asked me how my dad had gotten it, and I just told him, “Well that’s not really any of your business now is it?" He was my doctor; of all people you would think a doctor would be somewhat understanding, or at least respectful. People have different reactions. It was difficult, but probably not as difficult as it was for my mother. Her friends were a lot less open, it’s a generational thing, and I know she had a really hard time. She got a bit isolated.
My father had times in the hospital. He had pneumonia once, but he spent most of the time at home with hospice care. That was one of the more positive things, very positive for him to be at home. But for my husband and me, we lived in Philadelphia while my parents lived like I said in Cape Cod, which was eight hours away. We didn’t see him a lot, which was really hard for me. But his care was really good; it was such a good thing for him to be at home. My mother, who is an artist, donated a bunch of artwork to the hospice care because she was so appreciative of all that they did for us making it easier on us.
Although it was such an awful thing for us to go through, having Patreese and Josh going through such a similar situation at the same time was incredibly comforting. Patreese and I even had our first kids weeks apart while both my father and her father in law were sick. It was a pretty strong bond between us. I can’t express how much they helped us through it all.




Patreese Martin:

I think certainly at the time in the 80s which is when I was living in Philadelphia for graduate school and then after we graduated, that it was the height of awareness for AIDS. Living in the big city, it was quite a bit in the news. In the beginning it was regarded as the Gay Plague. No one knew what caused it. They didn’t quite understand it was a virus, it was hard to detect. There was a considerable amount of panic among the community. There wasn’t a cure. It was equivalent at the time I think to cancer. Up until that time, cancer diagnosis was a death sentence; no one knew how it behaved and really what to do about it.
The 80s was a very optimistic time in many ways. Economically the country was very strong. There had been much medical advancement in the treatment of cancer. So when this new disease came along that was killing people, had no cure, and no one knew what caused it and how it was transmitted, it was very scary. The 80s was also a time of the gay rights movement as well. So when AIDS started happening, people that may have come out of the closet were given one more thing to fear, in addition to be ostracized about being gay. It was regarded, especially in the beginning, that gay sex, sharing dirty needles and prostitution were major ways of transmitting it. Once it was understood it was a blood borne and bodily fluid borne disease, there were a lot more precautions. Hospitals took on more strict procedures for handling bodily fluids, and for many health care workers, an accidental needle stick, for example drawing blood from a patient it is easy to accidentally prick yourself, was very scary
I never felt personally threatened about AIDS at that time, mostly because I didn’t fit into the categories of the at risk. My husband and I were in architecture, a creative field that tends to have a lot more “out” people. We knew people who could talk openly about their experiences.
When my father in law received AIDS, which was really hard. It came to us in a way we never would have expected. We felt fortunate that our friends and colleagues were really supportive. I didn’t hesitate to tell friends and coworkers because I had that need to talk about it. It wasn’t something I wanted to keep secret. There was always a shadow that unlike other diseases, you had to be involved in some kind of shady activity. People often asked how he got it, because that was always on peoples minds. I guess that made me feel weird because at the point when you have it, it didn’t matter how you got it. It shouldn’t change how you feel about the circumstances of our family.
About that time Josh and I were contemplating starting a family, and one of the first thing I remember Josh saying after we found out was that he wont live to see his grandchildren and how sad that made him feel, but Curt did live long enough to see Sullivan.
We would come to visit as regularly as we could, an at home hospital had been set up in the big living room. Curt often couldn’t get up to eat meals so he would often eat in the living room. There was an IV pole and all that hospital-y stuff set up in the living room, but we would set up a card table in the living room for meals so that Curt could be in the same room with us while we ate.
I was fortunate that my midwife, who was the midwife for both my children, was extremely supportive and a source of a lot of medical information for us. It was somewhat sad and ironic, that we had this brand new baby in the room, and his grandfather who was dying. Some of the home health workers who came for Curt were pretty phenomenal, some less so. The one who was there when Curt finally passed away was named Jonathan. He was a great big African American guy but super gentle. He had to be able to turn patients over; it was very hard for Ellie, she was tiny woman and getting older. But Jonathan could do that, in a gentle and respectful way. The day Curt passed we were in the kitchen and Jonathan was the one who came in and told us that it was time, so we could be with him for his last few minutes.
Curt was a physician, his son was a physician. I think it’s hard to be a patient when you’re a doctor. It was particularly hard when there really is no cure, and for AIDS the drugs they did have had tremendous side affects. Curt new that there was only so much that could be done, and he wanted to die at home. It was my first experience with hospice. It was a way of alleviating pain and having the comfort of home and your family. It was a way of acknowledging that death was near. I think Ellie was incredibly brave through that. To watch him deteriorate was hard. And all that time she couldn’t, wouldn’t, leave the house more than she had to. She barely spent any time with anyone but Curt for those last two years, which is totally understandable, but definitely hard for her.
By the time Curt had full blown AIDS there was a lot more known. I don’t know if it is human nature or a cultural thing, but people are afraid of the sick. Many people were very ignorant about it all. Maybe the information wasn’t out there, maybe people just didn’t want to know, but I was asked occasionally if I was worried about Curt being in the same room with my baby, and I was asked how I could let him hold my baby. That was pretty alarming.
AIDS was so much in the news, less so now as mostly it is covered in the context of Africa. People would make some pretty insensitive jokes about AIDS, assuming everyone in the room wasn’t affected, it could be harsh. There were advances in AIDS treatment even over the course of Curt’s disease. There were times we wondered if they would find a cure before it was too late. We were very fortunate to have Curt and Ellie’s friends who were very supportive and knowledgeable, and he also had the financial means to pay for a lot of these extremely expensive drugs. For many people who had AIDS, who were poor or socially isolated, died alone with out the help that he got.