How do you offer hope in the face of no hope, in the face of hopelessness? Talking to authors Ellen Matzer and Valerie Hughes.
Before World AIDS Day 2021, I had the great privilege to sit down with Ellen Matzer, RN, CCRN, and Valery Hughes, FNP, RN authors of the book, NURSES ON THE INSIDE: STORIES OF THE HIV/AIDS EPIDEMIC IN NYC.
When a friend suggested that Ellen write a book about her experience as a nurse caring for AIDS patients, establishing the first AIDS wards and clinic, she initially blew it off, but in the summer of 2017 she started thinking about it and began writing down her memories and stories. Realizing that something was missing, she reached out to Valerie Hughes, who she worked with, and started a collaboration. Two years later, the book NURSES ON THE INSIDE was complete.
Talking About: Nurses On The Insideyoutu.be
The day I sat down with Ellen and Valerie to talk about the book and their experience, one of my first questions was if they had any idea of what they were seeing would be the enormous pandemic to come, and neither had the slightest idea. They explained that it was uncommon for nurses in different hospitals to talk about their cases; there was no method of sharing information, no social media, no cell phones. Valerie would be one of the founding members of the Association of Nurses in AIDS Care because they saw the need.
Ellen explained that there was no AIDS specialty or dedicated care initially. The first one was at the former Saint Clare's hospital located in Hell's Kitchen, which Valerie describes as a "horrendous part of the city." The hospital was run down, without many of the basics, from air conditioning and furniture to chart holders. No one wanted to work there.
Ellen describes how, except Nurses and Doctors, anyone else who was willing to work was hired and learned as they went along, from nursing assistants and orderlies to unit secretaries.
"Anybody that walked into the door of Saint Clare's got hired and trained to do something" - Ellen
Valerie adds that you had a job if you weren't afraid because so many people were afraid and would not care for people with HIV. Early in the book, they share their experience with the ignorance and fear, not only of the virus but the LGBTQ community describing how a colleague was overheard saying that "they deserved it," referring to gay men contracting HIV.
But it wasn't just the fear, ignorance, and lack of resources; there was no treatment. This was pre any cocktail, pre-AZT. In the book, Ellen asks Valerie, "Do you think we help?" to which I ask if that was a common question they asked themselves.
"Did we actually help anybody? We didn't save anybody, that's for sure. We didn't save anybody's life. I'm not even sure that we really prolonged anybody's life back then." – Ellen
Ellen says that she thinks they relieved suffering, relieved pain, kept people clean, and tried to come up with different things patients might eat to gain weight. She describes how they would mix Carnation Instant Breakfast with milk and then put that on cereal; they would put butter, mayonnaise, and syrup on anything they could to try and get patients a few extra calories.
Valerie adds that they were very present in patients' lives, which was the value-added. People did not die alone. Even for patients who were not in the hospital, Ellen, Valerie, and other staff would visit them so they would always have somebody see them every day to know they were cared for and were important.
HIV, the virus that causes AIDS, was identified in 1983, and It would be almost four more years before the first treatment for AIDS, AZT, would become available. By then, thousands had died.
We discuss the activism that came about due to HIV/AIDS and how the LGBTQ community came together; groups like ACT UP and Valerie describe her first research job with Community Research Initiative that was co-housed with ACT UP in Chelsea witnessing ACT UP. When I asked if they were surprised by the activism, Valerie added, "finally, gay men just stood up and said, fuck no, we're not putting up with this anymore!"
Most people don't realize that it is a result of the AIDS crisis/epidemic that we have a patient's bill of rights. Today, patients have access to what healthcare professionals write in their charts and have recourse if they are not treated with dignity and respect.
Ellen shares with me that she had just finished a book by Peter Staley, one of the founders of ACT UP Titled Never Silent that chronicles the history of ACT UP and the interactions between him, Larry Kramer, who was another founder, and Anthony Fouci.
"People assume that because we were taking care of people, we were not activists. I mean, we were activists in regard to taking care of our one-to-one patients or one to two or one to three patients. We were activists for them, advocating for their health and safety as much as we could, but we weren't out there holding protests." - Ellen
After 40 years and millions of lost lives, there is still no cure for HIV, and while there are new drugs that allow many people to live with this deadly virus, it is estimated that up to one million people around the world died from AIDS in 2020. I ask if there was a turning point in that pandemic where they felt like even if it couldn't be cured, it could be controlled, and Valerie points to 1995 when AZT, the first drug to treat HIV, was approved. Other advances and drug cocktails would follow and Valerie said, "And then, all of a sudden, people stopped being so sick."
While we have come a long way from the days when there was no treatment and infection was considered a death sentence, we also have a second generation who have and are growing up without a personal understanding of what it was like. Despite the new drugs that can allow an individual to reach an undetectable viral load and PREP drugs, the new enemy in the fight against HIV/AIDS is complacency.
Both Ellen and Valerie agree that education is the key because those most at risk face socioeconomic disadvantages that often include a lack of education and access. For those of us who were around initially, it is our responsibility to ensure that the current and future generations have a frame of reference and understanding of the HIV/AIDS epidemic and all the unfinished lives that were lost.
To learn more about Ellen and Valerie, visit their website www.nursesontheinside.com, their book NURSES ON THE INSIDE: Stories of the HIV/AIDS epidemic in NYC is available on Amazon. To watch, listen to or read my entire interview with Ellen and Valerie, visit my www.Espressotalks.com.