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HIV
HIV Long-Term Survivor Awareness Day
May 31, 2019 by Victoria Noe
In 2015, this essay won the Christopher Hewitt Award for Creative Nonfiction. I'm sharing it again today, in advance of June 5, which is HIV Long-Term Survivor Day. I never thought of myself as a long-term survivor, but I was assured I fit the definition.
"Long-Term Survivor"
It’s only the past few years that that designation has become widely used. Hell, no one expected it would ever be possible. There was a time when my only prayer was to get through a week without reading the obituary of someone I knew or admired from afar.
Since many who have reached that milestone are also baby boomers like me, I’ve taken a special interest in their challenges. During a visit to New York, I...
"Long-Term Survivor"
It’s only the past few years that that designation has become widely used. Hell, no one expected it would ever be possible. There was a time when my only prayer was to get through a week without reading the obituary of someone I knew or admired from afar.
Since many who have reached that milestone are also baby boomers like me, I’ve taken a special interest in their challenges. During a visit to New York, I...
A Special Women's History Month
Mar 28, 2019 by Victoria Noe
It’s been almost five years since the idea for my next book popped into my head.
On April 1, 2014, I was at the New York Public Library for a panel discussion: “The Women of ACT UP/NY! Fight Back! Fight AIDS!” A group of accomplished women - straight and lesbians - talked about the things they’d accomplished that changed the AIDS epidemic. The most significant one was arguably a four year battle to change the definition of AIDS to include women. Until 1992, the government and insurance companies defined AIDS by how it presented in men.
I knew most of the stories they told, though many in the audience, including my 19 year old daughter, did not. I remember thinking,...
On April 1, 2014, I was at the New York Public Library for a panel discussion: “The Women of ACT UP/NY! Fight Back! Fight AIDS!” A group of accomplished women - straight and lesbians - talked about the things they’d accomplished that changed the AIDS epidemic. The most significant one was arguably a four year battle to change the definition of AIDS to include women. Until 1992, the government and insurance companies defined AIDS by how it presented in men.
I knew most of the stories they told, though many in the audience, including my 19 year old daughter, did not. I remember thinking,...
Another World AIDS Day - Part 2
Dec 08, 2018 by Victoria Noe
Tuesday night I was honored to be on the program for the Alexian Brothers Housing and Health Alliance World AIDS Day event here in Chicago. About twenty people took to the stage to recite poetry, sing, play guitar or piano, tell stories. The mistress of ceremonies was a drag queen. It all felt very familiar and comforting.
Almost thirty years ago, Bonaventure House, their housing program for people with HIV/AIDS, was one of my clients. I wrote government and foundation grants for them. So when I found out they were hosting this event, I wanted to be part of it.
It was also the first time I’ve spoken in front of an audience since my mother’s graveside service in March. I wasn’t...
Almost thirty years ago, Bonaventure House, their housing program for people with HIV/AIDS, was one of my clients. I wrote government and foundation grants for them. So when I found out they were hosting this event, I wanted to be part of it.
It was also the first time I’ve spoken in front of an audience since my mother’s graveside service in March. I wasn’t...
Another World AIDS Day
Nov 30, 2018 by Victoria Noe
December 1, 1988
I was in London at a performance of the The Secret of Sherlock Holmes with Jeremy Brett and Edward Hardwicke. At the end of the curtain call, Brett made a brief speech. It was, he explained, the first World AIDS Day, and the ushers were about to circulate around the house with buckets, collecting donations for local AIDS service organizations. I dropped some money in the bucket and filed that idea away, not realizing I’d use it back in Chicago on the second World AIDS Day. And here we are, thirty years later.
I have a lot of friends who are long-term survivors. There was a time when long-term meant a couple of years, not decades. The fact that...
I was in London at a performance of the The Secret of Sherlock Holmes with Jeremy Brett and Edward Hardwicke. At the end of the curtain call, Brett made a brief speech. It was, he explained, the first World AIDS Day, and the ushers were about to circulate around the house with buckets, collecting donations for local AIDS service organizations. I dropped some money in the bucket and filed that idea away, not realizing I’d use it back in Chicago on the second World AIDS Day. And here we are, thirty years later.
I have a lot of friends who are long-term survivors. There was a time when long-term meant a couple of years, not decades. The fact that...
An Embarrassment of Riches
May 31, 2018 by Victoria Noe
My color coded files last fall.
You’d think I’d be used to this by now.
I write nonfiction and over the past eight years I’ve done research on a variety of topics related to my books: moral injury, the AIDS epidemic, 9/11, military procedures, men’s health and always, grief. There is no shortage of material available on the internet, in films and TV shows, in poetry and song lyrics, in clinical trials, books and magazine articles.
One of my guilty pleasures is finding a resource that is both appropriate and obscure. Sometimes they’re found in books that have been out of print for decades; I found one in London last month at Gay’s the Word bookstore. Sometimes they’re...
You’d think I’d be used to this by now.
I write nonfiction and over the past eight years I’ve done research on a variety of topics related to my books: moral injury, the AIDS epidemic, 9/11, military procedures, men’s health and always, grief. There is no shortage of material available on the internet, in films and TV shows, in poetry and song lyrics, in clinical trials, books and magazine articles.
One of my guilty pleasures is finding a resource that is both appropriate and obscure. Sometimes they’re found in books that have been out of print for decades; I found one in London last month at Gay’s the Word bookstore. Sometimes they’re...
The Last Blog Post of 2017
Dec 21, 2017 by Victoria Noe
Deposit Photos
Like many of you, I’m a bit over-committed these days: presents to wrap (assuming they’re already bought), cards to mail, travel arrangements to finalize.
I started writing this blog post last week. It included a bunch of year-end helpful hints. And then I decided I wasn’t going to do that. Social media is full of year-end helpful hints. What I really needed to do was, well, look back.
Last December I was in rehab for my broken writing hand. I was still doing things with my left hand only: not just personal care but decorating the Christmas tree. Yes, I put on the ornaments and tinsel without breaking anything else, which was kind of a miracle....
Like many of you, I’m a bit over-committed these days: presents to wrap (assuming they’re already bought), cards to mail, travel arrangements to finalize.
I started writing this blog post last week. It included a bunch of year-end helpful hints. And then I decided I wasn’t going to do that. Social media is full of year-end helpful hints. What I really needed to do was, well, look back.
Last December I was in rehab for my broken writing hand. I was still doing things with my left hand only: not just personal care but decorating the Christmas tree. Yes, I put on the ornaments and tinsel without breaking anything else, which was kind of a miracle....
Who Cares About Your Story?
Aug 30, 2017 by Victoria Noe
“I can’t believe anyone cares about this.”
That was the response from a woman who will be in my next book, Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community. I was on a panel with another writer, who mentioned that her sister-in-law’s involvement in the AIDS community during the dark days of the epidemic might be of interest to me. Her story - which will be in the book - is not just interesting: it’s unique and powerful and almost completely unknown, even among those who have been involved in the cause for decades.
Her reaction to being asked permission to include her in my book was not unusual. Many of the people I’ve interviewed -...
Her reaction to being asked permission to include her in my book was not unusual. Many of the people I’ve interviewed -...
When Life Gets in the Way of Writing
Jun 22, 2017 by Victoria Noe
lovingonme.com
If you've read this blog for any length of time, you know I've spent almost two years working on a new book. Fag Hags. Divas and Moms: The Legacy of Straight Women in the AIDS Community has taken on a life of its own. What started as a nagging idea turned into what I fully admit is an obsession to share important, previously-unknown stories of straight women around the world throughout the history of the epidemic.
Big project, right? I knew from the beginning it would be, but with each passing month it seemed to grow in scope and importance. Strangers around the world offered assistance. Interviewees laughed...
If you've read this blog for any length of time, you know I've spent almost two years working on a new book. Fag Hags. Divas and Moms: The Legacy of Straight Women in the AIDS Community has taken on a life of its own. What started as a nagging idea turned into what I fully admit is an obsession to share important, previously-unknown stories of straight women around the world throughout the history of the epidemic.
Big project, right? I knew from the beginning it would be, but with each passing month it seemed to grow in scope and importance. Strangers around the world offered assistance. Interviewees laughed...
HIV Long-Term Survivors Awareness Day
May 31, 2017 by Victoria Noe
June 5 is HIV Long-Term Survivors Awareness Day, so I’m sharing my essay, "Long-Term Survivor", that won the 2015 Christopher Hewitt Award for Creative Nonfiction from A&U Magazine. Since then I’ve written more and presented on the topic of moral injury in long-term survivors, something that is close to my heart. We can’t help each other until we recognize the challenges. And for me, that meant admitting that I had challenges, too.
Long-Term Survivor
It’s only the past few years that that designation has become widely used. Hell, no one expected it would ever be possible. There was a time when my only prayer was to get through a week without reading the obituary of someone I knew or admired from afar.
Since...
Long-Term Survivor
It’s only the past few years that that designation has become widely used. Hell, no one expected it would ever be possible. There was a time when my only prayer was to get through a week without reading the obituary of someone I knew or admired from afar.
Since...
The Ripples of Our Audience
May 24, 2017 by Victoria Noe
Writers are always aware that we have an audience, and not just when we’re writing.
We all - no matter how we publish - create marketing plans. Often, when asked who our audience is, insist it’s ‘everyone’. But that’s not realistic or workable as a plan.
We debate the effectiveness of Facebook ads vs. newsletter offers, Amazon promotions vs. Goodreads giveaways. We have at least a pretty good idea of who our audience is: gender, age, geographic location, interests. But sometimes we can still be surprised.
I was in Boston earlier this month, speaking at The Muse and the Marketplace writing conference. It was a cold, dreary, rain-soaked weekend outside the Park Plaza Hotel, but energetic and stimulating inside.
Towards the end of the...
We debate the effectiveness of Facebook ads vs. newsletter offers, Amazon promotions vs. Goodreads giveaways. We have at least a pretty good idea of who our audience is: gender, age, geographic location, interests. But sometimes we can still be surprised.
I was in Boston earlier this month, speaking at The Muse and the Marketplace writing conference. It was a cold, dreary, rain-soaked weekend outside the Park Plaza Hotel, but energetic and stimulating inside.
Towards the end of the...
Release Day (Again) for Friend Grief and AIDS
May 02, 2017 by Victoria Noe
I checked the calendar, so I know it’s true. It’s been four years since I published Friend Grief and AIDS: Thirty Years of Burying Our Friends. A lot has happened since then.
Some of the most recognizable people in the AIDS community, like Peter Staley and Jim Eigo, have become friends. I’ve attended AIDS conferences and meetings in New York, Chicago and Washington. I joined ACT UP/NY. I wrote freelance articles about the epidemic and won an award for one (2015 Christopher Hewitt Award for Creative Nonfiction). I make presentations about the epidemic and moral injury in long-term survivors. And I made a commitment to another, much longer book.
And though my life changed keeping the promise I made to my friend...
Some of the most recognizable people in the AIDS community, like Peter Staley and Jim Eigo, have become friends. I’ve attended AIDS conferences and meetings in New York, Chicago and Washington. I joined ACT UP/NY. I wrote freelance articles about the epidemic and won an award for one (2015 Christopher Hewitt Award for Creative Nonfiction). I make presentations about the epidemic and moral injury in long-term survivors. And I made a commitment to another, much longer book.
And though my life changed keeping the promise I made to my friend...
Women's History Month - AIDSWatch
Mar 28, 2017 by Victoria Noe
I planned to turn over my blog again this week to another straight woman in the AIDS community. That particular post will have to wait a bit. Instead I thought it would be better to report on my day (the first of two) in Washington, DC at AIDSWatch. It's no accident, in my mind, that the conference is presented by the Elizabeth Taylor AIDS Foundation, named for once of the fiercest advocates in the history of the epidemic.
I went last year, joining a few hundred people from around the country to advocate for funding and legislation important to people living with HIV and AIDS. It was my first time lobbying in the capitol since 1989, when I advocated for the...
I went last year, joining a few hundred people from around the country to advocate for funding and legislation important to people living with HIV and AIDS. It was my first time lobbying in the capitol since 1989, when I advocated for the...
Women's History Month - Trudy James
Mar 14, 2017 by Victoria Noe
AppleMark
I was referred to Trudy James by another Chicago author. It was one of those serendipitous moments. I don't know how else I would've found out about Trudy and the amazing work she has done in the AIDS community. But I guarantee you will learn more about her in my book, Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community:
I was accepted into a one year Pastoral Care internship at the University of Arkansas Medical Center in Little Rock in 1989. A newly-trained chaplain, from Kansas, I knew nothing about AIDS, a fearful, stigmatized disease slowly creeping into the South. I learned fast from the eight AIDS patients I served that...
I was referred to Trudy James by another Chicago author. It was one of those serendipitous moments. I don't know how else I would've found out about Trudy and the amazing work she has done in the AIDS community. But I guarantee you will learn more about her in my book, Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community:
I was accepted into a one year Pastoral Care internship at the University of Arkansas Medical Center in Little Rock in 1989. A newly-trained chaplain, from Kansas, I knew nothing about AIDS, a fearful, stigmatized disease slowly creeping into the South. I learned fast from the eight AIDS patients I served that...
AIDS and Women's History Month
Feb 22, 2017 by Victoria Noe
ohio.edu
It’s no secret that I’m writing another book. What began as a nagging thought turned into an idea that has taken on a life of its own. Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community overwhelms me occasionally – if you define ‘occasionally’ as ‘at least once a day’.
I’ve always felt these were stories that needed to be told: how straight women around the world have been an important part of the AIDS community since the beginning of the epidemic. But a random comment from a colleague a few weeks ago opened my eyes to something much bigger.
I was telling her about the book and she said “It’s like Hidden...
It’s no secret that I’m writing another book. What began as a nagging thought turned into an idea that has taken on a life of its own. Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community overwhelms me occasionally – if you define ‘occasionally’ as ‘at least once a day’.
I’ve always felt these were stories that needed to be told: how straight women around the world have been an important part of the AIDS community since the beginning of the epidemic. But a random comment from a colleague a few weeks ago opened my eyes to something much bigger.
I was telling her about the book and she said “It’s like Hidden...
The Next Stage for My Next Book
Oct 26, 2016 by Victoria Noe
I'll be there this week interviewing women for the book.
I’m back…in New York, that is. The last couple trips here I was doing research for my next book, Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community. I’m on a first-name basis with the research librarians at the New York Public Library (5th Avenue and Lincoln Center). They’ve been a great help to me: “That tape is out for digitization, but I took the liberty of pulling the transcript for you.”
This trip marks the next stage for the book. I’m not done with the research; not by a long shot. But between previous visits here, research online and at the U...
I’m back…in New York, that is. The last couple trips here I was doing research for my next book, Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community. I’m on a first-name basis with the research librarians at the New York Public Library (5th Avenue and Lincoln Center). They’ve been a great help to me: “That tape is out for digitization, but I took the liberty of pulling the transcript for you.”
This trip marks the next stage for the book. I’m not done with the research; not by a long shot. But between previous visits here, research online and at the U...
"Are You Straight?" - Researching My Next Book
Aug 10, 2016 by Victoria Noe
NYPL Library for the Performing Arts
All of the Friend Grief books required research. I knew I couldn’t rely only on personal interviews because there were some celebrities I wanted to include, as well as people I could not travel to meet. Truth be told, I like doing research. I feel a sense of accomplishment when I find what I’m looking for. I get really jazzed when I uncover a gem.
But this next book…well, the research is on a whole different level.
Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community looks at the contributions of these women through the 35 years of the epidemic. I made a few decisions early on that...
All of the Friend Grief books required research. I knew I couldn’t rely only on personal interviews because there were some celebrities I wanted to include, as well as people I could not travel to meet. Truth be told, I like doing research. I feel a sense of accomplishment when I find what I’m looking for. I get really jazzed when I uncover a gem.
But this next book…well, the research is on a whole different level.
Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community looks at the contributions of these women through the 35 years of the epidemic. I made a few decisions early on that...
Women's History Month - Andrea Johnson
Mar 29, 2016 by Victoria Noe
Andrea Johnson
My final guest blogger for Women’s History Month is Andrea Johnson. As is often the case, we’ve never met IRL (in real life) but our paths have crossed. She found out she was HIV positive in 2007, when she was tested after learning of her ex-husband’s affair. Isolated and depressed, she made the decision to devote her life to reaching out to women most at risk or living with HIV. You will not find a more passionate advocate.
“How do I LOVE a woman living with HIV without acquiring HIV?”
It’s a question I get all too often from men that are HIV negative that find out a woman he may be interested in is HIV positive,...
My final guest blogger for Women’s History Month is Andrea Johnson. As is often the case, we’ve never met IRL (in real life) but our paths have crossed. She found out she was HIV positive in 2007, when she was tested after learning of her ex-husband’s affair. Isolated and depressed, she made the decision to devote her life to reaching out to women most at risk or living with HIV. You will not find a more passionate advocate.
“How do I LOVE a woman living with HIV without acquiring HIV?”
It’s a question I get all too often from men that are HIV negative that find out a woman he may be interested in is HIV positive,...
Women's History Month - Eileen Dreyer
Mar 22, 2016 by Victoria Noe
Eileen Dreyer
I’ve known Eileen Dreyer since the Beatles were still together, so that’s a long time; in fact, we saw them perform. While I was raising money for AIDS organizations in the late 80s and early 90s in Chicago, she was on the front lines in St. Louis. The anger is still there, as it is for many of us. Her story continues Women’s History Month:
I hadn't realized how angry I still was until I watched The Normal Heart. Seething angry, unresolved angry. Wishing there were someone I could scream at angry. Because I was there. I saw the beginning of the epidemic. And I'm not sure I'll forgive us for how we faced it.
I worked...
I’ve known Eileen Dreyer since the Beatles were still together, so that’s a long time; in fact, we saw them perform. While I was raising money for AIDS organizations in the late 80s and early 90s in Chicago, she was on the front lines in St. Louis. The anger is still there, as it is for many of us. Her story continues Women’s History Month:
I hadn't realized how angry I still was until I watched The Normal Heart. Seething angry, unresolved angry. Wishing there were someone I could scream at angry. Because I was there. I saw the beginning of the epidemic. And I'm not sure I'll forgive us for how we faced it.
I worked...
Women’s History Month – Rosa E. Martinez Colon
Mar 15, 2016 by Victoria Noe
I had to go Washington, DC for the US Conference on AIDS last September to meet the amazing Rosa E. Martinez-Colon. If she looks familiar, it’s because we led a lively discussion on women and AIDS on World AIDS Day at Women & Children First bookstore in Chicago. This is her story:
I remember the first time I heard about AIDS was around 1984 or so; I was still living in Puerto Rico. A neighborhood friend who was an injection drug user died after a short stay in the hospital. The rumor spread rapidly that he had “died of AIDS” – “se murió de SIDA”. Soon after, a couple other neighbors died as well; coincidentally they were either sexual partners or...
I remember the first time I heard about AIDS was around 1984 or so; I was still living in Puerto Rico. A neighborhood friend who was an injection drug user died after a short stay in the hospital. The rumor spread rapidly that he had “died of AIDS” – “se murió de SIDA”. Soon after, a couple other neighbors died as well; coincidentally they were either sexual partners or...
Women's History Month - Nancy Duncan
Mar 08, 2016 by Victoria Noe
Nancy Duncan
For Women’s History Month I’m sharing stories from women in the AIDS community. First up is Nancy Duncan, who I had the pleasure of meeting through ACT UP/NY. She is long-term survivor, an inspiration and a friend. My thanks to her for sharing her story.
Being a heterosexual woman in the early days of HIV/AIDS was very different than now. I’m 58 years old and have been living with HIV for going on 31 years. I was first diagnosed in 1990, infected by having unprotected sex with a man who didn’t know he was HIV+. I’d walked around for five years not knowing because I had no symptoms.
I didn't know anyone else who was living with...
For Women’s History Month I’m sharing stories from women in the AIDS community. First up is Nancy Duncan, who I had the pleasure of meeting through ACT UP/NY. She is long-term survivor, an inspiration and a friend. My thanks to her for sharing her story.
Being a heterosexual woman in the early days of HIV/AIDS was very different than now. I’m 58 years old and have been living with HIV for going on 31 years. I was first diagnosed in 1990, infected by having unprotected sex with a man who didn’t know he was HIV+. I’d walked around for five years not knowing because I had no symptoms.
I didn't know anyone else who was living with...
