New York State has been hit particularly hard by the COVID-19 pandemic. At this time, over 10,000 New Yorkers have died. The deaths are impacting people from every community, including people with HIV. In the early afternoon of April 2, Rick Rosenberg died from COVID-19. He was a long-term survivor of HIV. Having lived with HIV for close to three decades, he was a fighter for justice and had a wealth of knowledge of theater, literature, and all things Jewish. To learn more about the life of Rick Rosenberg, Terri Wilder spoke with his daughter Danielle Rosenberg and his nephew, Jason Rosenberg.
Danielle is a digital nomad currently living in the UK. She believes in health, healthy work life balance, sustainable living and having a creative outlet. Jason Rosenberg is a New York native, who is currently a member of ACT UP New York, a direct-action advocacy group working to ensure protections for people living with HIV, and is a co-founder of #PrEP4ALL.
Terri Wilder: So let me start by first saying I'm sorry about the death of your family member. I'm sure this is a very difficult time, and I appreciate you talking with me. I'd love to start at the very beginning. Danielle, can you tell me when and where your dad was born?
Danielle Rosenberg: Yeah, he was born on September 15, in 1947. And he was born in East Flatbush, Brooklyn.
TW: Great. Tell me about his life, his work, his family. Tell me more about his faith.
DR: I can talk about the family. His parents were named Julius and Estelle Rosenberg. And when he was of marriage age, he married Barbara and adopted a daughter, Sandra. And in his second marriage to Madeline he had two daughters, Meredith and Danielle. And the second marriage ended around the early 90s. And in his school life, he received his MBA from Adelphi University, and had a few jobs in his life, most notably as an audio engineer at ABC and president of Page World.
TW: So, what year was your dad diagnosed with HIV?
DR: He was diagnosed with HIV/AIDS in 1994. And he was told that he had about two years left to live hmm
TW: So what was life like for him living with HIV?
DR: I was like, nine years old when he got the diagnosis, but for about the next like five, six, seven years, he lived in a few apartments on his own, where my sister and I would visit him on weekends. And he was, you know, doing really well. He wanted to be as independent as possible and just wanted to keep seeing his children, making sure he had a connection with us. But eventually, it became too much for him to live on his own and he became wheelchair bound. And in 2004, he was moved into Rivington House on the Lower East Side in New York.
TW: Great. I know that he was engaged in one of the protests outside of Rivington house, and I'm assuming it was when they were trying to shut it down. And both you and Jason, were there with him. Can you tell me a little bit about the protest? I don't know, Jason, if you want to talk about that.
Jason Rosenberg: Sure. So the protest was organized by Neighbors to Save Rivington and also ACT UP New York co-sponsored as well. And the idea was to gain transparency and to also protect the housing and lives of long-term survivors that were affected by the displacement of Rivington House, which was closed in 2014. And a majority of long-term survivors that were living in Rivington House were displaced to Arch Care at Terrance Cardinal Cook (TCC). Many people were affected by the displacement because they received really specific and thoughtful care from people that knew the lives of long-term survivors and also had a really good grasp of the Lower East Side. The Neighbors to Save Rivington House were a lot of Lower East Side residents or also people who were caretakers at Rivington House.
TW: And so Danielle, your dad gave a speech at the protest. Can you tell me a little bit about what he said.
DR: So in his speech, he talked about the care that he had at Rivington House and why it was so special and why it needs to reopen. So starting to close in 2014, and this was in 2018. And he was an advocate for those four years and after about getting Rivington back open and in use for long-term care patients, and getting the people that work there back. He said specifically in the speech, “hire everyone back.” So it wasn't just about the building. It wasn't just about the location. It was about the people who worked there. That combined made an amazing living experience for those who had lived there.
TW: So was your dad kind of an activist before his diagnosis of HIV or did that kind of come after?
DR: That's a really good question. I don't want to say no, but I don't have any recollection of it. I think with the time that he got from not being able to work, and living in an assisted living facility, he became more active in community and found things that he cared about and wanted to help them volunteer more.
JR: I think being confined by a wheelchair and by his living situation, I think he became a wealth of knowledge for learning like literally every single thing about Rivington House, the deeds and the conversations with the city and the people, and the realtors behind it. So, I think because of the injustice of himself and the people he loved at Rivington, I think he became an advocate out of rage and out of a personal injustice for him. Prior to that, he would go to AIDS walks, and he told me stories about going to different events at the Javits Center for HIV/AIDS, but that's as far as I can remember as well.
TW: So tell me about his COVID-19 diagnosis. When was he diagnosed? What was his care like?
DR: I actually wrote out chronologically text messages that I got from him. This is a sort of timeline for you if you wanted me to read that.
DR: Okay. On Sunday March 15. My dad texted me that this is the first weekend of lockdown. “Everything is suspended here, no programs of any kind. The tables in the lobby have been removed and computer room and libraries closed. Even Shabbat and church services are being held on a closed-circuit TV. It’s so boring. It hasn't been worth getting out of bed.”
And that was that to me was like the worst thing to hear. Because he was so social and he loved being around people and chatting. And that was the worst thing, to hear him say something like, “it's not worth getting out of bed.” It was just heartbreaking.
And then Wednesday, March 18. He sent me a text that said “they have isolated us from the rest of the world. We are not quarantined. There haven't been any cases of coronavirus in this facility. Yet.”
On Thursday. March 19. I texted him to let him know that my wedding was being moved to tomorrow because my fiancé and I were afraid that weddings were about to be banned in the UK and they were, about three days later. And my dad made a joke “Why the rush?” And then he informed me that his roommate had been taken to the hospital that morning. And I asked him if it was COVID related, and he said, “We all hope not. Personally I don't think so.”
On March 20, Friday, I had just texted my father some photos of my wedding, which happened that morning, and then after a few texts back and forth, he let me know that his roommate had tested positive for coronavirus. So over the weekend, I checked in with him each day. He was in good spirits and he said he was asymptomatic. And then on Saturday he informed me that it looked like Rivington House was going to be open to the help patients fight coronavirus. And I just thought that was so interesting because like even then he was following the news on Rivington House and he was involved in what was happening and he was so excited that it might be reopened.
It wasn't until Tuesday the 24th that he was given a coronavirus test. And on Wednesday, March 25, he sent a text message to Jason, myself, my sister, and one of his closest volunteers that he tested positive for coronavirus. And then I asked him if he were if he was feeling any worse on Thursday because that was when he found out he had coronavirus, and he said, “Significantly.”
TW: So what happened at the facility? Did they put them in isolation?
DR: Yes, he was. He was isolated in his room.
TW: And then what kind of supportive care were they able to give him?
JR: I mean, I think they needed to, maybe correct me if I'm wrong, but I think they needed to insert an IV because he was unable to swallow food and fluid.
DR: Everything I heard, I'm not sure about you Jason as well, was from my dad. So if I wasn't hearing about his care from him, I wasn't hearing about the care.
JR: Right, exactly. I think that's definitely a good point to make. As much as we love the staff at TCC, we were hearing a lot of radio silence. My parents had to call them continually, I'm sure Danielle you had to as well.
DR: I had to a bunch.
JR: Yeah. Yeah. There's a lot of silence. So we were definitely worried throughout that week.
DR: To be fair though, the facility was on lockdown. They had a lot of patients. A lot of people were getting coronavirus at that time, I'm assuming it was spreading quickly. So they were very busy. I'm sure they were short staffed. And at the time, my dad texted a lot and I never had to call TCC to hear about how he was doing. It was only towards the end when he was unable to text on his phone that I started calling the facility and trying to get them to get me to talk to him and yeah, that was hard.
TW: So your dad died. April 2. And because the whole world is in stay at home mode, how did you have a funeral or how did you recognize his death?
DR: I think it was actually beautifully done. Jason's father, who is my dad's brother, my uncle, coordinated and Jason, if you want to talk about that process.
JR: Yeah. So the rabbi who did it is Rabbi Ian Jacknis, who is our family Rabbi. He went to the burial site and did it alone in isolation and then went back to his office and continued with the Zoom funeral. And on the Zoom call was our Rabbi and then his Rabbi from TCC came, and then my boss who was there, but wasn't videoed, was on as well. So we had a lot of spirituality on that.
TW: Great. And so, clearly the world has failed many people, particularly in the early years of the HIV epidemic, and it of course feels like it's failing in response to the COVID-19 pandemic, really bringing to light our broken systems. Why do you think things like this keep happening?
JR: I think this keeps happening because a lot of what happens time after time are just band aids, like we see things happen and we see our most vulnerable people ravaged through sickness, through lack of protections in place and they continue to happen because of it. I think because of our broken housing, health care and economic systems we keep seeing a really strong and heavy failure to the most marginalized people in our country.
TW: So Jason, in your Facebook posts, you lovingly remembered your uncle and you stated,” I am deeply angry and somber that COVID took him. But I know that he savored every bit of life, and it was such a gift to know him. Now let's kick the shit out of HIV and COVID.” Your last statement is very reminiscent of Vito Russo's “Why We Fight” speech in which he stated “In a lot of ways AIDS activists are like those doctors out there. They're so busy putting out fires and taking care of people on respirators, that they don't have the time to take care of all the sick people. We're so busy putting out fires right now that we don't have the time to talk to each other and strategize and plan for the next wave and the next day and the next month and the next week and the next year. And we're going to have to find the time to do that in the next few months. And we have to commit ourselves to doing that. And then after we kick the shit out of this disease, we're all going to be alive to kick the shit out of the system, so that this never happens again.”
Can you talk about your anger and what your uncle's death brings up for you as an AIDS activist fighting to end basically two epidemics at the same time?
JR: Right. I think when we when we look at COVID and we look at a raging pandemic, where we're forgetting that we have an ongoing epidemic, and that it's alive for a lot of the same communities that are dying of COVID-19. So a lot of Black and Brown communities, indigenous communities, long-term survivors and people aging with HIV. And these were a lot of people that continue to be neglected in our health care system. So ACT UP, for instance, was one of the first to acknowledge or chant about health care for all. And one of the chants that we still uses health care is a right. And I think that we were still seeing broken systems and I mean, today we just surpassed 10,000 deaths in New York State and with Medicaid cuts from a state budget with the disease ravaging jails and our homeless community. I think we're really still fighting continued neglect and failure of the people that need care and assistance with proper stay.
TW: So Danielle, how would you like your dad to be remembered?
DR: As the the guy that you could talk to about anything and learn anything from. He was the guy that you could just talk to you, period. He would talk to anyone. Tell them as many facts about life and you know you would learn a wealth of knowledge from him. And he was just friendly and loved getting to know people.
TW: So when he died, there was a suggestion that people could make donations in his memory. Can you talk about the two organizations that that you that you suggested?
DR: The first one is GiGi’s Playhouse. So a couple years ago, he had some volunteers come to TCC. Well, a couple of volunteers came to TCC from GiGi’s Playhouse, and he developed a friendship with the volunteers there to the point where if they were having programs outside of TCC, he would go and volunteer to help at GiGi’s Playhouse as one of the volunteers. So he's been active in that community for a very long time. And they loved him so much. And the other one is ACT UP, as you can imagine, which is Jason's program that, you know, is HIV/AIDS activists and it's helping to find a cure for the disease that my dad had for 28 years.
TW: Great. And so in closing, anything that you want to share about your dad, your uncle,
that maybe I didn't ask about.
DR: I mean, there's so much that we didn't talk about. But the main issue is that, you know, if coronavirus hadn't happened, he wouldn't be gone today. Everyone thought he was invincible. Yeah. And that's, that's the saddest part of all this is that if this hadn't happened right now, he would still live with us.
JR: Yeah, I'll definitely remember first calling his rabbi and he would go to Shabbat services every Friday at TCC. And they really grew a strong bond and friendship around jokes and around spirituality. [His rabbi] said on his funeral that he led a service by himself when the rabbi couldn't attend. But the first thing [his rabbi] said to me was that their whole community was just in shock, because they really thought that Rick was immortal, that he could confront anything that came his way.
And my family saw living proof of someone that he was a fighter but also someone who really sought joy when things were bleak. And I that's what all of us can learn from him, to eat every minute of life.