Nurses On The Inside: Stories Of The HIV/AIDS Epidemic In NYC

by Ellen Matzer, Valery Hughes

This is based on true and real events. It is the story of two nurses who witnessed the early years of the HIV/AIDS epidemic from the frontline. It focuses on their lives and their experiences. Some of the story is raw, sometimes graphic, but familiar for people with HIV infection, family members, friends, and other nurses and medical professionals such as Ellen and Valery. There were hundreds of nurses who went through what Ellen and Valery experienced. They want to tell this story to give a voice to a generation lost, encouraging the world to remember one simple this history cannot be repeated.

Genres: Nonfiction, History, Memoir, Medicine

246 pages, Kindle Edition

Published July 13, 2019

Reviews

[Ellen Matzer]

well, I did write it! but it is a cautionary tale that has now come true again in the form of COVID-19. please read Nurses on the Inside. and look for our next book can anyone guess what this one will be about? also looking for nurses to interview about their experiences with COVID-19

[Nicola Kennedy · Rating 5 out of 5]

A very good read...this book basically walked me through what it was like being a nurse during the aids epidemic. I've had the pleasure of having Helen Matzer as my professor I can tell you she was a 'Badass Nurse' then and a 'Badass Nurse educator' now. Thank you for impacting my life in such an awesome way. THANK YOU BOTH FOR SHARING YOUR STORY.

[Adam · Rating 4 out of 5]

Everyone who wants an insight into what nursing was like in NYC when AIDS came along should read this. Real stories from the 70's-90's really hit home how scary a time it was for everyone.

[Andrea · Rating 4 out of 5]

I first heard about this book from the AIDS Memorial Instagram page. The page posts pictures and a memory someone has written about this person with the hashtag #whatisrememberedlives. Some are partners but there are all kinds a relationships.
One of the posts featured the relationship between a young man and a nurse who wrote this book.
This book is a timeline of the AIDS epidemic written by two nurses who were in NYC hospitals when the first few cases came in and no one knew what they were seeing. They spent most of their careers fighting AIDS.
It’s not a deep, descriptive book. It’s pretty cut and dry but we learn all about the spread, the fear some health workers had to working with AIDS patients, the changes in protocols(no gloves were used before universal precautions), the changes in how end of life care was provided, the various common opportunistic infections. But most of all we hear about the people, the patients, the families, the staff, the doctors. All the lives lost and lives remembered.

[Emily B · Rating 4 out of 5]

I downloaded this on my kindle after watching It's A Sin on channel 4 recently as I wanted to know more about the realities of nursing patients with HIV/AIDS on the front lines. It is a moving book and written with a lot of compassion and wisdom; as a nurse with an ICU background myself, I found it very interesting. The stories themselves are so powerful and heartbreaking. It's almost quite a prescient read given the current global events; a strange, new and awful illness which changes the lives of so many, and indeed ends many lives too. I also learned a lot about the progression of HIV/AIDS that I didn't know before; about how it affects the immune system in so many awful ways. All in all, a very thoughtful read.

[Paul LaGreca · Rating 5 out of 5]

"Nurses on the Inside" is one of those rare books that unexpectedly appear and resonates with the reader. Ellen Matzer and Valery Hughes accurately describe the emotion and trauma of the HIV/AIDS epidemic in New York City when it first reared its ugly head. As nurses working with this strange new disease that initially seemed to affect only gay men, they forged forward in their work with love, compassion, and tireless care. They stood by their patients, regardless of the fear of contagion, while other medical professionals shied away.

I was deeply moved by this memoir. It brought back memories of the early 1980s and the demise of many artists I knew at the time. Above all, this book is about love. The authors truly demonstrate what unconditional love looks like. Their recounted stories are both heartbreaking and funny and the love they had for so many of their patients whom they recall by name, bounce off the pages.

I highly recommend this touching story - it is unique, historical, poignant, and moving all in one. I am grateful it was recommended to me.

[Chase]

Nurses on the Inside (2019) is a multi-testimonial account of the AIDS crisis in New York City, USA. Haunting and prosaic, the book provides anecdotes of nurse-patient interactions, with a penchant for clear, technical language that helps to make sense of 1980s and 90s medical discourse(s). Matzer and Hughes, two seasoned nurses in some of NYC’s most trafficked AIDS clinics, demonstrate an unusual sense of emotional clarity and empathy. They impart a nostalgic, but commemorative, focus on the lives of their patients, attending to the most characteristic and rich elements of their interactions with those who died from AIDS-related complications. More than a graphic narrative about the immense loss of AIDS crisis, the authors illuminate the importance and impact of individuals (including patients, doctors, and other nurses) as they careen in and out of their professional and social lifeworlds. Perhaps most interesting about this collection is the ways in which the authors recall their involvement in patient lives. For example, in the final chapters, the authors return to the empty spaces of hospital wards, calling upon the dead to remember the at-times excruciating, but generally provoking, experiences of human resilience and determination.

Nurses on the Inside is an excellent portal into the histories of HIV/AIDS in the United States, particularly because it remains attentive to the time(s) and place(s) of affective, medical, scientific, social and cultural advances, which we now understand as seminal moments during the AIDS crisis. Nurses, doctors, and students of history, sociology, and medicine, will find this book appealing. Additionally, scholars interested in the discursive layers of HIV/AIDS histories will find this book useful for understanding how AIDS crisis is narrated using memory, testimonial, and technical expertise.

[Loren Olson · Rating 4 out of 5]

Whom do you wish to be at your side during major life events? Most of us want to be surrounded by those we love. We want their companionship and their touch.

Death is the ultimate life event. The COVID-19 epidemic has created a fear in many of us that we might die surrounded only by healthcare professionals in Hazmat-like suits, unable to have that final goodbye with those we love.

As an older gay man, I re-experience the sadness and grief-- indeed, the rage--of living through the HIV epidemic of the 1980's, but I was also struck by the parallels with the COVID epidemic: thet terror of being threatened by unknown enemy, the isolation and loneliness as I sought to protect myself, and finally, the failure of the government to act.

This book is about the dedication of two nurses and their staff in treating not only an illness but a PERSON with an illness. This is a powerful story of of re-humanizing those whose government and sadly their families had considered to be not worth saving.

[Geraldine Kelly · Rating 5 out of 5]

This book brought with it a flood of memories- Stat arterial blood gases on ice, before pulse oximetry, the big old plastic binders that were our patient charts, and of course all the beautiful, young people ravaged by this devastating disease in its early days.

The days before we had good med options…

The days before all the science was understood…

This is an amazing story of two heroes among many, who gave their lifeblood to serve these dying men and women.

A heartbreaking tribute.

[Thomas Muriuki · Rating 5 out of 5]

A must-read: “Nurses on the Inside” is a truly heart-wrenching story of the fate of patients and healthcare professionals in the wake of the HIV epidemic.

It’s a display of human suffering, the power of compassion and bravery that exemplifies the efforts of a generation quite overlooked that championed the fight against HIV/AIDS.

The book offers a profound account of the highs and lows of the HIV epidemic, but also a reaffirmation of the undying will of humanity in the wake of an epidemic that hit NYC the hardest.

[Diane Gay · Rating 5 out of 5]

Living signature not dying of it

Great book thanks for telling the stories so well. I was blessed with excellent care 90% of the time and a wonderful support system Nassau university medical center saved my life twice, I don't remember all the names of nurses and doctors but the caring and warmth of a few stick out in my mind. Wish I could thank them.

[Margaret · Rating 5 out of 5]

This is a beautiful read on compassion and strength in the face of unknowns. There are a lot of similarities in the stories to the onset of co-vid and the handling. While we have come a long way with treatment and care for HIV and AIDS, there is still far to go and the book makes this message clear as well.

[Barbara Cordell · Rating 4 out of 5]

Important memoir

This book brought back so many memories; I cried and grieved for so many lost souls. But the worldwide AIDS epidemic is far from over and everyone should be educated about this and other tragic and preventable diseases!

[Bethan Galvin · Rating 5 out of 5]

Moving

Moving and heartfelt account of some incredible people battling a relentless disease and crippling social stigma. Harrowing and thought provoking.

[Whitney Yanez · Rating 5 out of 5]

Excellent read

This book tells the story of the 1970-1998 battle with AIDS. Without the authors and their co-workers dedication to their patients and research we would still be dealing with the devastating deaths in great numbers due to AIDS.

[Orly Steinberg · Rating 5 out of 5]

What a fabulous read!
As an RN myself, trained during the 80s; the height of the AIDS epidemic, this book brought back many memories of my days at Bellevue Hospital. It made me laugh. It made me cry.
Many things I had totally forgotten about (med cards- ha!, smoking lounges - although I never smoked, blood gases). This book gives insight into what nursing was like during those days.... and how far we have come. The stories were very touching and these patients were lucky to have crossed paths with the two authors. Highly recommended!

[Scott Bechard Prividera · Rating 5 out of 5]

I cried

I I read and cried, read and cried. So many senseless deaths due to this horrible disease. A part of my community and generation wiped out. Thank you Valery and Ellen for sharing all of yours and countess other nurses and staffs selfless contributions and for caring for all of our friends, lovers, brothers, sisters and parents.

[Pauline White · Rating 5 out of 5]

Frontline

Aids care told from the perspective of the nurses who did actually care about their patients. For all that covid has killed aids is a far bigger problem that could yet come back to bite us unless we sit up and take notice. Hard to do with the current lockdowns and deaths I think 🤔 this was shocking to read considering it was only a couple of years ago that it was the big news. The world possibly lost some excellent people to this disease and it isn't over yet! BTW you will need the tissues

[Scott Pearson · Rating 4 out of 5]

Much has changed since HIV/AIDS first started spreading widely in America. Fortunately, we now have better drugs to treat HIV infections. The healthcare system focuses on prevention through PrEP. America is more accepting of homosexuality, though more progress can always be made. Some things remain similar, though. Preventative vaccines are still a hoped-for but not realized dream. The stigma of a diagnosis still exists, but not nearly as badly as it did in the 1980s (when even President Reagan could not utter the word AIDS).

Forty years later, our challenge becomes not to forget the agony some faced during this epidemic. Even in communities most affected by HIV/AIDS, the topic can be viewed as a relic of the past instead of a live issue for the present. As Faulkner reminds us, the past is never really past, and we benefit from understanding its hardships. In this book, Matzer and Hughes, who worked as nurses on the frontlines of the HIV/AIDS epidemic in New York City, seek to chronicle and preserve some of these stories for the future.

The book starts their journeys as recent graduates of a nursing program. They continue their training while working, but they set themselves apart by a deep, abiding compassion for patients suffering from an unknown disease. Being in New York City, they were on the cusp of the action. They educated themselves about what we knew and acted reasonably in response by taking appropriate – but not excessive – precautions. Many of their colleagues criticized them with fearful statements, but Matzer and Hughes persevered.

These stories take place from the late 1970s until when, in the late 1990s, multi-drug therapy made the landmark of containing the disease. They share individual stories of patients. These patients, facing an inevitable, difficult, and isolated death, sought to maintain their human dignity and passion for life. Matzer, in particular, relates stories of her patients. We must not forget these very human struggles lest we lose a part of what it means to be human on this planet.

The book does contain common grammatical and syntactical errors. It could probably use a good editor to provide some polish and strength of plot. However, the first-hand nature of the accounts is evident from this rawness, and the first-hand compassion is even more evident. Nursing students (and students of other health professions) can see the virtuous possibilities of their work. These stories demonstrate how they can make an impact – and be impacted, too! A lot of sadness dwells in these stories, but like Holocaust memorials or remembrances of other tragedies, we are richer for reflecting upon them.

[Katy Sellers · Rating 4 out of 5]

A really important story, I was inspired to read more about the HIV/AIDS epidemic having watched It's A Sin on Channel 4 recently. As a nurse myself who has spent the majority of my career thus far working on the front line of the COVID19 pandemic, I was about to draw many parallels with my own experiences. It's very stop/start within the chapters and is set out as lots of small paragraphs but the content is so relatable to me and so harrowing and I'm glad I read it. If you have an interest in this subject I wouldn't hesitate.

[Laura Peterson · Rating 3 out of 5]

Good story, written by the people who lived it. It was a very easy read, but I may have expected more medical information because,it was suggested in a FB nursing group. Still, it was really interesting to hear about the early development of the AIDS epidemic and how medical staff viewed it (the short bit about a phlebotomist who contracted it with "MULTIPLE NEEDLE STICKS" just about bowled me over!)

[Donna · Rating 5 out of 5]

Incredible story of dedication, empathy and compassion at a time when it was hard to find. These two nurses are amazing women.

[Christina Torres · Rating 5 out of 5]

Poignant

I never knew the war going on in NYC in the 90s when I lived there. This book humanized it. The frontlines deserve all our gratitude.

[Kirsty · Rating 4 out of 5]

A good book to read alongside "The least of these our Brethren" all about St Clares Spellman unit in NYC.

[Monica M · Rating 2 out of 5]

It was ok. Not what I expected when I picked it up to read. The timelines were a bit confusing at times and there were a few typos with names of patients. One patient was identified by 2 different names and it was difficult to tell if the authors were referring to 2 different people or one, but I think it was an error.
It is very left leaning. Not unbiased in anyway. Also, not very scientific.
On the other hand, as a nurse, I appreciated Ellen and Valarie’s love and commitment for their patients. They seemed like lovely examples of patient centered nurses and more nurses could use their compassion and dedication.

[Erin Henry · Rating 5 out of 5]

I have long been fascinated by the nurses who stood on the front lines of the AIDS crisis. To me they embody what it means to be a nurse; to care for your patient always. I hope I would have been as brave and caring as the nurses in this book. The love and care they had for their patients shown through the stories.

[Stacy Lee Hughes · Rating 5 out of 5]

I believe this is the first book that has made me sob while reading it. So harrowing was this story about an angel in the form of a human who goes by the name of Ruth Coker Burks.

At 26 years of age, while Ruth was visiting her best friend in an Arkansas hospital in 1986, she noticed nurses drawing straws outside at a room with a red tarp and a 'biohazard' sign on the door that had head-to-toe isolation suits & masks and six food trays on the floor outside it. Curious, she approached the room and heard the patient softly call out 'help'. She entered the room and asked, “What do you need honey?”

Little did Ruth know that asking a simple question would change her life so much, as well as the lives of hundreds, maybe thousands, of young gay men who would pass away of AIDS, most cruelly rejected by their families who they'd came home to see, thinking they would care for them, after their friends and lovers had died in the cities they'd escaped to from Arkansas. Even some medical staff seemed reluctant or downright refused to care for them ... Sister Angela Mayer, administrator at St Joseph’s Sisters of Mercy Catholic Hospital: “We have a patient that we need removed. We cannot care for him. This hospital is not equipped to handle people with aids. It is not safe. And we don’t want the reputation”.

Ruth made sure the last days/hours, passing and burial/cremation of these men were spent with kindness, dignity and also, occasionally, in receipt of food, water and medical care, even just feeling the touch of another human … the last thing they felt on this earth was love ❤️

And here’s a quote from Ruth: “When you went into somebody else’s world, you had to enjoy their life and not bring your world into theirs”.

[Amanda · Rating 3 out of 5]

Oh, to be a nurse in the 70s: no PPE, no HIPAA, no ADA, just vibes. This was hearty and authentic and full of really interesting stories. It was also barely edited and printed in like three different fonts. Major respect for the nurses and the stories they told, but they deserved a better end product.