PRIDE
Interview
Ellen Matzer & Valery Hughes
NURSES ON THE INSIDE: STORIES OF THE HIV/AIDS EPIDEMIC IN NYC
nursesontheinside.com
Nurses On The Inside details the stories of two nurses who witnessed the front line of the early years of the HIV/AIDS epidemic.
As nurses, after living and working through the AIDS Epidemic, do you think we could have acted differently during the Covid 19 pandemic?
Valery Hughes (VH): I think in general medical professionals did the right thing, and heaven knows the world was more responsive to COVID than they ever were to the HIV pandemic. We are all victims of our own need for self-preservation, and I think people wanted to ignore HIV as they felt immune. But this is the important thing about the privileged believing they are "above" all that: we are all breathing the same air, living in the same world, open to getting the same infections. People thought if you weren't "gay" you wouldn't be getting HIV; all those people who acquired it through straight sex or transfusions were so shocked when it happened. About COVID, I think the people with means were shocked that they could get sick. Although it's noticeably clear that poor people were affected in far worse ways, this virus was a great equalizer in many ways.
Ellen Matzer (EM): I am going to agree with Valery about the world in general being more responsive to the COVID pandemic. Times being what they are, with social media a rapid source of disseminating information, and the world under a microscope, response was swift. Certainly, the development of a vaccine was fast tracked.
Frontline workers were however NOT given up to date information on PPE and then NOT given adequate PPE to do their jobs. What types of precautions taken were dictated not by the science but by supply. It was unimaginable to think of re using PPE the way the frontline workers had to.
It is also clear that people of means got access to treatments faster than the marginalized of our society. Moreover, it also became clear that this virus did not discriminate.
Are there any plans to write a follow up book on the Covid 19 pandemic?
EM: Well, we already did. It is called Beyond the Mask, A view from the Frontline. We did interview frontline workers from all over the United States and wrote their stories. Names and places, of course changed as many feared for their jobs if they exposed the poor response of hospitals in acquiring the proper amount of PPE for them
Nurses On The Inside: Stories Of The HIV/AIDS Epidemic In NYC is an outstanding achievement, did you ever imagine you would get such a great reaction to your book?
VH: I’m very gratified to have received such a response. Naturally, I feel that this is an urgent and important issue--a great medical issue for our times--and it has been my life's work. But I didn't know there were so many people out there who would respond in the way they did.
EM: We are both honoured to have received the response that we did. Both of us spent a large part of our careers in this specialty (Valery certainly more than I).
We always thought we were just doing our jobs with the utmost compassion and empathy we could give and didn’t realize this would stand out as mentioned in many of the reviews the book received.
What was the biggest challenge you faced writing Nurses On The Inside?
VH: Without a doubt, trying to get it published
EM: I am going to have to agree with Valery here. I spent months querying agents to go with a traditional publisher, but most thought it was not “commercial” enough, wouldn’t sell, many agents offered us their thanks for doing what we did but did not think our experiences were worthy of publication.
One agent even commented “you wrote a version of the AIDS memorial quilt, but no one is going to read that.”
Was it hard for you to take a look back at this time in your lives and did you have any apprehensions about sharing your experiences?
VH: Well, yes and no. I was a little worried that people would be upset (and many were, of course) because it is an upsetting topic. It wasn't hard to look back because when one gets older one tends to review one's life and legacy.
EM: It was cathartic for me to take a look back at our individual and collective experiences. I have always said that in the 40 years since the epidemic began, I have indelible memories from that time. I have cared for thousands of patients since that time, but I will NEVER remember them the way I did back then.
When did you decide that now was the right time for you to write your book?
VH: Gosh I'm not sure. Ellen was the real driving force so she may be better to answer this one.
EM: This was kind of decided for me. I had never thought that our experiences were any more or less important than any other nurses’ experiences during that time. I happened to have a reunion with some incredibly old grammar school friends and after discussing what each of us had done with our lives over the decades, one friend had said to me “You should write a book.”
I thought, no way, I am not an author. I sat on it for a few months, then one day it came to me, I should write down my memories of the time, just for me. I started writing I then called Valery and decided we should write our book.
During the height of the epidemic how did you manage to stay focused whilst also offering this touch of humanity to those who so desperately needed you?
VH: Well, that's the art of nursing, isn't it? Keeping your head in the chaos (not that I always kept my head, by the way). But the disease was not one susceptible to dramatic renderings--no defibrillation, no yelling "clear!" no cutting people's chests open. It was hand holding and cleaning up feces and trying to give hope and comfort. It was nursing in its most sublime state.
EM: As Valery pointed out, there were no dramatic events like you see on medical procedural shows, no running to CT scan, no life support. It was all about walking through the illness with those that we knew would not be around for long; helping them through the weaker times and helping them and their families let go
Nurses are forever on the frontlines but do not get half the credit, praise or pay they deserve, what is it about nursing that interested you so much?
VH: The chance to make a difference every day. That's extremely rewarding, very seductive.
EM: I have to agree with Valery, the chance to make a difference, to live in service to others.
"I guarantee you that if COVID only made lesbians, Asians or Black people sick there would be not one vaccine, let alone 5 in the US alone."
Do you think shows like It´s A Sin (BBC) and Pose (HBO) are playing an important role informing this generation (from all walks of life) of what life was like during the early days of the HIV epidemic?
VH: Oh yes! For POSE, anyway, sadly I haven't seen It's a Sin yet. I think Janet Mock did a terrific job setting the scenes and the tone, especially in the hospital episodes... Of course, I'm partial because I was peripherally involved in that project.
EM: I have seen both POSE and It’s a Sin, both Janet Mock and Russel T. Davies did an excellent job depicting most of the epidemic, certainly POSE enlightened the world about the transgender community and what they did to survive back then. There is also Ward 5B, a documentary about the beginning of the epidemic in San Francisco and After 82 in the UK. Everything sheds light on the epidemic and it important in its’ own way. Remembering lives well live, but unfinished.
And finally, what do you hope people will take away from your book?
VH: I want them to see the people we talked about as HUMAN. It is so easy to dismiss people who are not your ethnic group, not your colour, not your sexual orientation, as less than human. It was that overall belief that allowed the illness to get so entrenched and the treatments to be so delayed. I guarantee you that if COVID only made lesbians, Asians or Black people sick there would be not one vaccine, let alone 5 in the US alone. I think the NY Times with the series "Those We've Lost" tried to do exactly the same thing--make the people who died appear human. That worked except for a core group of very cynical people indeed.
EM: I have to agree with Valery, these were real people with real futures that were taken away. No one was listening back then, the was no money put into research for years. If Covid only affected a portion of the population, we would not have seen the response we have.