“Not everyone knows what you know.”
That has been a mantra of mine for many years. It has served me well in public speaking, in interviews and in my writing. Nurses on the Inside: Stories of the HIV/AIDS Epidemic in NYC by Ellen Matzer and Valery Hughes is a great example of why it’s so important to share what we know with those who don’t.
Things we take for granted today like case management and universal precautions were unheard of before the AIDS epidemic became publicly known in 1981. One of the great strengths of this book is documenting how treatment changed, so that the reader can fully understand the evolution of critical care nursing when confronting this frightening new virus.
They pull no punches, describing the condition of their patients in cringe-worthy detail. Nursing is a dirty business in some ways, so the horrors Valery and Ellen’s patients endured will shock many readers. That’s okay. You should be shocked. But you can’t help but admire the dedication and love those patients received, often at great emotional cost to the nurses.
There were patients who begged for anything that might prolong their lives, and those who were desperate to end their suffering. Patients who’d been disowned by their families and evicted from their homes. Patients who sometimes had doctors who were indifferent, at best. Patients whose only physical contact with someone who didn’t hate or fear them was from the nurses in the AIDS ward.
It’s obvious that those patients – and the people who rejected them, both inside and outside of the medical community – have stayed with Valery and Ellen all this time: David, the young British man who Ellen and her husband welcomed into their home for a time until he could get back on his feet; Joyce, the woman whose husband didn’t want her to come home again because she was ‘tainted’; Linda, the 19 year old girl who had never been kissed and the orderly who granted her wish before she died.
These are first-person accounts, a memoir about compassionate nursing, that will be familiar to those who remember the early days of the epidemic. For those who know little, it will be a shocking, haunting eye-opener. Don’t let the medical jargon throw you: though it can be overwhelming at times, it’s explained clearly.
I had the pleasure of meeting with Ellen and Valery (and her wife, Mary) recently. And I can confirm that the passion they share for the important work they did is clear on every page of this book. You may be surprised, you may be saddened by what you read. But you will come away with a newfound respect for the nurses who were – and continue to be – such a critical part of the AIDS community.
Order your copy of Nurses on the Inside from Amazon.