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Between Certain Death and a Possible Future: Queer Writing on Growing up with the AIDS Crisis
An enthralling and incisive anthology of personal essays on the persistent impact of the AIDS crisis on queer lives.
Every queer person lives with the trauma of AIDS, and this plays out intergenerationally. Usually we hear about two generations - the first, coming of age in the era of gay liberation, and then watching entire circles of friends die of a mysterious illness as the government did nothing to intervene. And now we hear about younger people growing up with effective treatment and prevention available, unable to comprehend the magnitude of the loss. But there is another generation between these two, one that came of age in the midst of the epidemic with the belief that desire intrinsically led to death, and internalized this trauma as part of becoming queer.
Between Certain Death and a Possible Future: Queer Writing on Growing up with the AIDS Crisis offers crucial stories from this missing generation in AIDS literature and cultural politics. This wide-ranging collection includes 36 personal essays on the ongoing and persistent impact of the HIV/AIDS crisis in queer lives. Here you will find an expansive range of perspectives on a specific generational story - essays that explore and explode conventional wisdom, while also providing a necessary bridge between experiences. These essays respond, with eloquence and incisiveness, to the question: How do we reckon with the trauma that continues to this day, and imagine a way out?
Every queer person lives with the trauma of AIDS, and this plays out intergenerationally. Usually we hear about two generations - the first, coming of age in the era of gay liberation, and then watching entire circles of friends die of a mysterious illness as the government did nothing to intervene. And now we hear about younger people growing up with effective treatment and prevention available, unable to comprehend the magnitude of the loss. But there is another generation between these two, one that came of age in the midst of the epidemic with the belief that desire intrinsically led to death, and internalized this trauma as part of becoming queer.
Between Certain Death and a Possible Future: Queer Writing on Growing up with the AIDS Crisis offers crucial stories from this missing generation in AIDS literature and cultural politics. This wide-ranging collection includes 36 personal essays on the ongoing and persistent impact of the HIV/AIDS crisis in queer lives. Here you will find an expansive range of perspectives on a specific generational story - essays that explore and explode conventional wisdom, while also providing a necessary bridge between experiences. These essays respond, with eloquence and incisiveness, to the question: How do we reckon with the trauma that continues to this day, and imagine a way out?
368 pages, Paperback
First published October 5, 2021
16 people are currently reading
905 people want to read
About the author
Mattilda Bernstein Sycamore
13 books442 followersMattilda Bernstein Sycamore is the award-winning author of The Freezer Door, a New York Times Editors’ Choice, one of Oprah Magazine’s Best LGBTQ Books of 2020, and a finalist for the PEN/Jean Stein Book Award. Winner of a Lambda Literary Award and an American Library Association Stonewall Honor Book, she’s the author of three novels and three nonfiction titles, and the editor of six nonfiction anthologies, most recently Between Certain Death and a Possible Future: Queer Writing on Growing Up with the AIDS Crisis. Sycamore lives in Seattle, and her new book, Touching the Art, will be released on November 7, 2023.
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Displaying 1 - 30 of 33 reviews
December 5, 2021
Between Certain Death and a Possible Future: Queer Writing on Growing up with the AIDS Crisis is a superb book edited by Mattilda Bernstein Sycamore. Much of the story-telling and scholarship around HIV and AIDS feature either the generation of adults that suffered through its first, mysterious, devastating wave, or the people growing up now, in an age where HIV is preventable. This collection brings together more than 35 essays that reckon with the generation in-between: the queer community who blossomed, came out, grew up, when the HIV pandemic was already raging. A generation that grew up knowing that gay = AIDS = death, and trying to reconcile that with their own desires.
This is an absolute must-read for those interested in the history of the LGBTQ community, its intersectionalities, and the way HIV has continued to impact people up to today. Essays tackle a variety of reactions to coming out amidst the terror of "the virus," from denial (it won't happen to me, it doesn't happen to people like me) to recklessness (if gay means death, then it's inevitable anyway) to hostility (blaming it on certain populations, lashing out) to overwhelming fear (censoring of desire, hiding in monogamy, avoiding penetrative sex). To some, long-term relationships felt impossible because of the inevitability of death—to others, they felt like the only safe option. Anti-Blackness, classism, and the overwhelmingly white and cis media representation of the virus made it hard for young queer people of color to understand their place in the crisis. One writer described growing up in the era as "walking into an epilogue," as he tried and failed to find the community of queer mentors and artists he'd heard so much about.
The essays also discuss the life "after" PrEP. It was disorienting for many to find that their gay identity was no longer linked to imminent or inevitable death. PrEP served for some as an anti-anxiety medication almost, a drug that they could depend on to finally help them feel safe, rather than lost, unmoored, targeted.
But PrEP's arrival was in many ways a double-edged sword. It brought on the "Second Silence," a new invisibility: in the myth that the virus had been dealt with, stigma and silence rose back to the forefront. Think about how insistent people were that after COVID-19 things would go "back to normal," and think of the voice in your head going, "There is absolutely nothing normal about what happened this year, or what will continue to happen, and we should not pretend there is." PrEP allowed the world to "go back to normal," but it ignored the structures and biases that let HIV become so bad in the first place. Sex workers, homeless youth, refugees, and countless other vulnerable populations are still at high risk for HIV and the stigma that comes with it.
Some writers wondered how incentivized the capitalist pharmaceutical megacorporations actually are to find a cure for HIV when PrEP makes them a lifetime's worth of money. Others discussed how there's new and added shame around being positive, because with the availability of PrEP, the myth has been renewed that anyone who gets HIV is being reckless; there is a hierarchy of undetectability now, that dismisses people who lack the resources or education for safe sex and HIV prevention or treatment. A professor noted that when teaching a seminar on the anthropology of HIV, they had to pause their teaching for two entire classes to just inform their students what HIV is and how it is spread. Disclosure is fraught, protections are scarce, and homophobia and dismissal still churn through our medical system.
The most informative essays for me personally were: "From the Inside: One Prisoner's Perspective" by Timothy Jones, which depicted the biases and neglect that allows HIV to run rampant in prisons; "Homeless Youth Are Still Dying of AIDS" by Sassafras Lowrey, which among other things pointed out that the sickest youth get more resources, whereas healthier ones are left to struggle on their own; "Those Who Left and Those Who Stayed" by Ahmed Awadalla, about the migrant experience in Germany and the horrors encountered in the country's medical system; and "PrEP Will Not Save Us: The Ghosts of AIDS and Suicide" by Kody Muncaster, which touched on the suicide crisis and the failures of neoliberal activism and support.
The essays were written by a wide, diverse range of nonbinary, queer female, trans, non-US, and POC authors. I think Sycamore did a fantastic job: the book taught me a lot, filled a gap in the literature around HIV and AIDS, and urged me to take action and refuse to treat the HIV crisis as something we've defeated.
Content warnings for suicide, terminal illness, homophobia, transphobia, bullying/abuse, violence, rape, addiction and substance abuse, and more. These are not comprehensive as these essays deal with a wide and varied number of topics, many of which are very difficult. If you have CW concerns, please read with caution.
This is an absolute must-read for those interested in the history of the LGBTQ community, its intersectionalities, and the way HIV has continued to impact people up to today. Essays tackle a variety of reactions to coming out amidst the terror of "the virus," from denial (it won't happen to me, it doesn't happen to people like me) to recklessness (if gay means death, then it's inevitable anyway) to hostility (blaming it on certain populations, lashing out) to overwhelming fear (censoring of desire, hiding in monogamy, avoiding penetrative sex). To some, long-term relationships felt impossible because of the inevitability of death—to others, they felt like the only safe option. Anti-Blackness, classism, and the overwhelmingly white and cis media representation of the virus made it hard for young queer people of color to understand their place in the crisis. One writer described growing up in the era as "walking into an epilogue," as he tried and failed to find the community of queer mentors and artists he'd heard so much about.
The essays also discuss the life "after" PrEP. It was disorienting for many to find that their gay identity was no longer linked to imminent or inevitable death. PrEP served for some as an anti-anxiety medication almost, a drug that they could depend on to finally help them feel safe, rather than lost, unmoored, targeted.
But PrEP's arrival was in many ways a double-edged sword. It brought on the "Second Silence," a new invisibility: in the myth that the virus had been dealt with, stigma and silence rose back to the forefront. Think about how insistent people were that after COVID-19 things would go "back to normal," and think of the voice in your head going, "There is absolutely nothing normal about what happened this year, or what will continue to happen, and we should not pretend there is." PrEP allowed the world to "go back to normal," but it ignored the structures and biases that let HIV become so bad in the first place. Sex workers, homeless youth, refugees, and countless other vulnerable populations are still at high risk for HIV and the stigma that comes with it.
Some writers wondered how incentivized the capitalist pharmaceutical megacorporations actually are to find a cure for HIV when PrEP makes them a lifetime's worth of money. Others discussed how there's new and added shame around being positive, because with the availability of PrEP, the myth has been renewed that anyone who gets HIV is being reckless; there is a hierarchy of undetectability now, that dismisses people who lack the resources or education for safe sex and HIV prevention or treatment. A professor noted that when teaching a seminar on the anthropology of HIV, they had to pause their teaching for two entire classes to just inform their students what HIV is and how it is spread. Disclosure is fraught, protections are scarce, and homophobia and dismissal still churn through our medical system.
The most informative essays for me personally were: "From the Inside: One Prisoner's Perspective" by Timothy Jones, which depicted the biases and neglect that allows HIV to run rampant in prisons; "Homeless Youth Are Still Dying of AIDS" by Sassafras Lowrey, which among other things pointed out that the sickest youth get more resources, whereas healthier ones are left to struggle on their own; "Those Who Left and Those Who Stayed" by Ahmed Awadalla, about the migrant experience in Germany and the horrors encountered in the country's medical system; and "PrEP Will Not Save Us: The Ghosts of AIDS and Suicide" by Kody Muncaster, which touched on the suicide crisis and the failures of neoliberal activism and support.
The essays were written by a wide, diverse range of nonbinary, queer female, trans, non-US, and POC authors. I think Sycamore did a fantastic job: the book taught me a lot, filled a gap in the literature around HIV and AIDS, and urged me to take action and refuse to treat the HIV crisis as something we've defeated.
Content warnings for suicide, terminal illness, homophobia, transphobia, bullying/abuse, violence, rape, addiction and substance abuse, and more. These are not comprehensive as these essays deal with a wide and varied number of topics, many of which are very difficult. If you have CW concerns, please read with caution.
May 26, 2025
very good! i think it's interesting growing up in a post-2000s world, where the conversation and experience of HIV + AIDS are seemingly extinct. with the proliferation of antiretrovirals and PReP, it can seem like the epidemic and death in droves is separate from what it means to be gay presently...like WWII or something...it feels so distant. and yet it not only is a recent event, but created a paradigm shift in the community, especially for people born during or after it's peak. HIV continues to have a profound effect on intimacy within all forms of relationships, political ideology, the medical industrial complex, class consciousness, and truth. while there have been major advances in LIVING with the disease, we as a community have lost the momentum built to find a cure for it. while there is more communication on hookup apps about status, there is stigma in and around being poz, corroding meaningful conversations with sexual partners about sex and reducing poz individuals to their status . while there is medication and treatment through the medical system, there is still the question of WHO can get access to them. if we are really about act up, fight back, fight aids, then it is time to take up our arms and show it.
March 20, 2025
As usual, Sycamore delivers an edited collection of sadness, joy, anger, rage, bitterness, love, hate, and queerness all thrown together at a wall, all left to roughly fit together in a way that doesn't always makes sense, but winds up being beautiful.
I was born in 1994, when the first AIDS medications became available. In 2007 when I was 13, I told a friend I was queer for the first time. In 2009 when I was 15, everyone found out. My mother said horrible things to me (fortunately, she has more than made up for it in her 15+ year support of me now). In 2012 I went to college and this was around the time that the LGBTQ+ struggle was picking up and diversifying beyond rainbow capitalist liberals begging the establishment for the right to look and act as heterosexual as possible; "Safe sex" was thrown in our faces everywhere. E v e r y w h e r e. I had more condoms than I had lovers. In other words, I grew up with HIV/AIDS always being present, always being a factor in my queerness, whether I wanted it to or not. When I was 18 and downloaded Grindr for the first time, I was met with the self-hating dichotomy of "clean" vs "not clean"; I was taught that HIV was not so much a physical death sentence, but a social and sexual death sentence. And as I began to learn about intersecting forms of oppression, such as being transgender, which I am, it was a double social/sexual death sentence for HIV+ trans people, of whom there a lot, and of whom receive the least amount of care and access to treatment.
I remember a lover I had in college; we were talking about our first times, and he casually mentioned that his first time had been with an internet friend at a convention they both wound up at, and that no condom had been used. I remember feeling both a rush of judgement and a rush of excitement and envy toward him; he wasn't bothered at all. I of course lived in fear and anxiety of the ever-present condom break. I felt I was doing the right thing, but I also didn't feel like he should be shamed for what he was doing. In my mind a schism began to form, one that has lasted ever since. I have been a HIV testing counselor, I do harm reduction where I distribute condoms, and that's all important, but I also relate to the feelings expressed in this book by young queer people or older queers who were young once, about the exhaustion and frustration around condom and HIV discourse, the still-present dichotomy of "clean" vs poz and how HIV+ people are still heavily stigmatized, both sexually and socially; in many states, HIV+ people are criminalized. That is a serious problem that is indicative of a broken society. This book does not have the answers to these problems, but it does provide a great rest stop on our collective journey to ending stigma and criminalization.
I was born in 1994, when the first AIDS medications became available. In 2007 when I was 13, I told a friend I was queer for the first time. In 2009 when I was 15, everyone found out. My mother said horrible things to me (fortunately, she has more than made up for it in her 15+ year support of me now). In 2012 I went to college and this was around the time that the LGBTQ+ struggle was picking up and diversifying beyond rainbow capitalist liberals begging the establishment for the right to look and act as heterosexual as possible; "Safe sex" was thrown in our faces everywhere. E v e r y w h e r e. I had more condoms than I had lovers. In other words, I grew up with HIV/AIDS always being present, always being a factor in my queerness, whether I wanted it to or not. When I was 18 and downloaded Grindr for the first time, I was met with the self-hating dichotomy of "clean" vs "not clean"; I was taught that HIV was not so much a physical death sentence, but a social and sexual death sentence. And as I began to learn about intersecting forms of oppression, such as being transgender, which I am, it was a double social/sexual death sentence for HIV+ trans people, of whom there a lot, and of whom receive the least amount of care and access to treatment.
I remember a lover I had in college; we were talking about our first times, and he casually mentioned that his first time had been with an internet friend at a convention they both wound up at, and that no condom had been used. I remember feeling both a rush of judgement and a rush of excitement and envy toward him; he wasn't bothered at all. I of course lived in fear and anxiety of the ever-present condom break. I felt I was doing the right thing, but I also didn't feel like he should be shamed for what he was doing. In my mind a schism began to form, one that has lasted ever since. I have been a HIV testing counselor, I do harm reduction where I distribute condoms, and that's all important, but I also relate to the feelings expressed in this book by young queer people or older queers who were young once, about the exhaustion and frustration around condom and HIV discourse, the still-present dichotomy of "clean" vs poz and how HIV+ people are still heavily stigmatized, both sexually and socially; in many states, HIV+ people are criminalized. That is a serious problem that is indicative of a broken society. This book does not have the answers to these problems, but it does provide a great rest stop on our collective journey to ending stigma and criminalization.
March 18, 2022
Truly the most touching and painful collection of essays I’ve ever read.
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October 25, 2023this was so good. i think "undead disco" was one of my favorite essays in the collection. but they were all so good. i feel like a lot of times there are a few "misses" in a given essay collection, but not so here; as usual, i'll read anything sycamore edits tbh.
January 5, 2022
Poignant, brutally honest, and breathtakingly beautiful, this collection is one that I will revisit time and again. I know these people. I have lived a similar story. Experienced such loss and love. This is a fantastic collection of experiences of living with, overcoming, and continuing the fight to find a cure for AIDS while simultaneously recognizing in each story the individuals and their intrinsic value as a part of the human race. Whether poz or not, the fight is no less necessary than it was when we were growing up.
This text also addresses with honesty the misconception that PrEP is somehow an element of erasure for the past and the havoc that HIV and AIDS have been allowed to play in specific sects of society, acting as yet another form of Othering against non -cis, -white, -male, -middle/upperclass individuals.
I cried and laughed and remembered with fondness all those I lost. And, through these stories, I felt the connection with others, knowing that none of us are isolated in these experiences or in our will to continue the fight with love and compassion.
This text also addresses with honesty the misconception that PrEP is somehow an element of erasure for the past and the havoc that HIV and AIDS have been allowed to play in specific sects of society, acting as yet another form of Othering against non -cis, -white, -male, -middle/upperclass individuals.
I cried and laughed and remembered with fondness all those I lost. And, through these stories, I felt the connection with others, knowing that none of us are isolated in these experiences or in our will to continue the fight with love and compassion.
February 9, 2022
a necessary, tiny-yet-potent drop in the bucket remembering what has been lost with the loss of our elders
a way to place ourselves in relationship with lineage: ours & the oppressors’
a portal to comprehension & care that we may weave stronger the fabric of our overlapping communities
a way to place ourselves in relationship with lineage: ours & the oppressors’
a portal to comprehension & care that we may weave stronger the fabric of our overlapping communities
November 3, 2023
This is such an important book. I especially appreciated how the stories ranged all the way from the outbreak of the crisis and up until now, into PrEP and 'Undetectable=Untransmittable' times.
HIV and AIDS, at least in 'The Global West', are often reduced to something that happened in the 80'es and then somehow ended around the end of the 90'es. And the stories most people know, are the ones about the crisis years. About gay people dying. And all they know after that is that they stopped hearing about it. Which probably means things got better, right?
And yes, things got much better. And yet, I have spoken to many young gay men who still grew up believing that HIV meant their sexuality was something that could kill them. Because even though HIV has been treatable for more than 25 years, the only stories they knew, were the ones about the crisis years. About gay people dying. And that's why it still matters to talk about HIV today. Because many of us grew up being taught that sex could kill us, before we even knew what sex is. That's why we need new stories. And that's why this book is so so fucking important!
HIV and AIDS, at least in 'The Global West', are often reduced to something that happened in the 80'es and then somehow ended around the end of the 90'es. And the stories most people know, are the ones about the crisis years. About gay people dying. And all they know after that is that they stopped hearing about it. Which probably means things got better, right?
And yes, things got much better. And yet, I have spoken to many young gay men who still grew up believing that HIV meant their sexuality was something that could kill them. Because even though HIV has been treatable for more than 25 years, the only stories they knew, were the ones about the crisis years. About gay people dying. And that's why it still matters to talk about HIV today. Because many of us grew up being taught that sex could kill us, before we even knew what sex is. That's why we need new stories. And that's why this book is so so fucking important!
August 12, 2022
I was surprised how good this was, especially given the large number of contributors. I expected the collection would be more spotty. I admit I got bored a couple of times, and the inclusion of ~3 essays about life outside North America felt off -- either making it a balanced international collection or keep it focused would've made more sense. But I really liked how it was arranged roughly chronologically, so the first few essays were about people who had had many lovers and friends die, and the later ones were people who only learned about AIDS through media proclaiming it was "no longer a death sentence." It was so interesting to read about the ways AIDS ironically became more stigmatized among gay men later on, with one man in an early essay writing that he stopped using condoms because he'd "chosen sides and was going to go down with the ship" (i.e. people with AIDS were his people and the ones he admired) while one of the later essays written by someone whose HIV was undetectable describes uninfected young people recoiling despite the lack of risk to them. The many negative views of PreP gave me something to think about -some said it contributes to an individualistic attitude of keeping oneself safe rather than the interdependent care of earlier eras (I understand this, but was not clear what the alternative was being advocated), and one person said pharmaceutical companies would rather put everyone on PreP indefinitely than find a cure that only infected people would pay for (very plausible).
August 9, 2022
This is not an easy book, but a book you will have to put down and walk away from and think about for an hour or two before you come back to it. You will not agree with every idea or view-point in the book, but that’s okay, because the important thing is to think about why each writer thinks/believes/feels what they do. It is a very diverse book in many ways: in ethnicities, experiences, geographic locations, ways of thinking, beliefs, etc. I’ve learned a lot, and as I keep processing, I’m sure I’ll learn more. As long as you let yourself think, I’m sure you will too.
April 17, 2022
A much needed book that falters in its execution. The choice of essays seems to have been driven by a literary idea of reparation ie., unlikely and micro minority voices. What this does unfortunately is pinpoint the range of readers who can identify with the individual authors - because identity has been foregrounded, the topic is obscured. Too bad, too , since the concept is appealing and timely.
October 5, 2022
HIV/AIDS has always been an area of public health that I have felt a healthy fear towards. While it’s no longer a death sentence, it has such a powerful and painful history. This book includes a bunch of individual experiences with the virus throughout its history and how the virus and attitudes toward it have changed.
December 10, 2023
Certainly one of the best books I’ve read in 2023. Probably one of the best books I’ve read in a long time. I cannot do this book justice. It was salve I didn’t know I needed. It was a song I hadn’t heard for decades. It was the inspiration to tap into feelings and finally know how to give them a voice.
March 23, 2022
Wow. Fuck. Took my damn time with it because I ended up using the entire book as research for a play I'm writing. But I finally finished and fuck. Every essay slaps. Hit after hit, baby! Fuck. I want Miranda Recht's essay "Elders" to nourish me when I am down and revive me.
April 8, 2022
3.5 stars rounded up.
Like most essays collections, some I liked and some I felt were boring or unnecessary. I do feel the book was a little too long, some of the essays had a very tenuous link to HIV and AIDS. Lots of useful information, I learned tons.
Like most essays collections, some I liked and some I felt were boring or unnecessary. I do feel the book was a little too long, some of the essays had a very tenuous link to HIV and AIDS. Lots of useful information, I learned tons.
June 15, 2022
Necessary addition to cultural histories of HIV, especially how it emphasizes issues with stigma, classist access, medical discrimination. I learned so much, especially the parts about mass media coverage on TV, talk shows, nightly news, and pre-internet circulation of queer knowledge.
July 12, 2024
The specific focus of this edited volume creates a universe with the many experiences represented within. I am of the generation that grew up with the AIDS crisis and think about it all the time-- this book brought me into shared reality and an important sense of belonging.
November 4, 2024
this collection of essays is filled with so much love, so much heartache, and so much in between. it's full of beautifully diverse voices whose essays have educated me and opened my eyes to perspectives that I was ignorantly unaware of, and they will stay with me always.
August 18, 2021
This is a brilliant anthology. Read my review here: https://booksandbakes.substack.com/p/...
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October 18, 2021Reviewed by Chris Manno for Lone Star Literary Life.
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January 20, 2022362.19697 B5658 2021
June 10, 2022
A fantastic essay collection, so heartwrenching and honest. Beautifully arranged and collected, with a cohesive structure and truly remarkable content.
October 31, 2022
Made me cry consistently. Mattilda Bernstein Sycamore is a great anthologist and editor. Love this book & her. So grateful for all queer elders.
January 8, 2023
Essential reading. Very emotional: sorrowful, tender, proud.
January 27, 2023
This was heartbreaking and life-changing and I recommend it to everyone.
August 18, 2023
I appreciated the breadth of viewpoints included in the many essays in this collection, but it was hit or miss on the quality of the writing.
August 25, 2023
I learned so much about SO many intersecting issues in this book. I'm grateful it exists for individuals to share their stories.
February 10, 2024
I really loved the way that this book flowed. It really told a story.
June 12, 2024
Absolutely stunning book - I don't think I'm ever going to stop thinking about what I learned from the essays inside it.
Displaying 1 - 30 of 33 reviews