In her new memoir, The Pox Lover, journalist and activist Anne-christine d’Adesky looks back at the AIDS crisis
by Alina Oswald
There’s a very fine line between triumph and disaster. That line is hope,” best-selling author, HIV long-term survivor and activist Joel Rothschild [A&U, October 2003] writes in his book, Hope–A Story of Triumph.
Hope has inspired many AIDS activists to fight for treatment, for a cure, to stay alive. At times, hope was all that many could hold on to, while trying to survive the AIDS crisis. Hope still inspires many to fight today’s AIDS epidemic, as well as related hate and stigma.
Anne-christine d’Adesky is one of these AIDS activists. She doesn’t only fight the fight, but in her new book, The Pox Lover: An Activist’s Decade in New York and Paris, she also teaches newer generations how to fight the AIDS fight and other crises, while sharing a diary of the AIDS era.
“That’s the good thing about diaries,” d’Adesky tells me over the phone. “We write them when we’re miserable. We write them when we’re in crisis. We don’t write them when we’re happy.”
She further explains that she decided to call her book The Pox Lover because “in many ways, the AIDS epidemic is emblematic of a stigmatized illness. [AIDS] is not just a medical illness that came our way. It’s also a social, even sexual epidemic that in so many ways is characterized by this fundamental discrimination that is, and was, directed at people living with the disease. And it’s very much about homophobia.”
The Pox Lover is a powerful read that captivates its readers right from its unusual, unconventional, and unexpected title. The word “Pox” brings to mind the Middle Ages and the stigma related to diseases of that time. Centuries later, during the AIDS years, we witness stigma related to the disease of this particular time.
What makes HIV different is the way people have been taught to fear HIV/AIDS. The author explains that “[p]eople don’t fear cancer because it’s not the same kind of transmissible disease. [That’s why] the word ‘Pox’ is an appropriate word [for the title,] because [it] still instills that fear.”
Placing the word “Lover” next to the word “Pox”—Pox Lover—gives a human face to those stigmatized, in this case because of their HIV status, and helps humanize the narratives of those associated with the epidemic. “So, for me, putting these two words together was the correct way to describe my journey through the epidemic,” she adds.
While her journey through her AIDS activism started before the nineties, her memoir focuses on the pandemic of the nineties. That’s because it wasn’t until the beginning of that decade that d’Adesky started keeping a consistent diary.
“That was very much the journey that I wanted to talk about,” she says, “how we embody [the epidemic] even when we’re not living with the disease, as journalists or as friends taking care of friends who’re dying. So, especially for treatment journalists and science journalists, there was a very deep and profound sense of urgency in the sense of trying to pursue things. And it’s very much why I and many other journalists were so exhausted on an emotional level, working constantly to try to respond to such a need for information.”
Powerful and personal, raw and riveting, d’Adesky’s diaries bring to life the everyday reality of living with the virus during the nineties—the suffering, loss, sometimes the triumphs. “These are the stories that we don’t really know,” d’Adesky says. “For me it was important [to include them]. Now their legacy is going to be known and appreciated.”
Throughout the years, HIV stories have followed in the footsteps of the progress accomplished in the overall fight against the virus. First, there were the stories of loss and survival; then, narratives of living, not only surviving, with the virus; the most recent stories touch on undetectability and an actual cure being within our reach.
The author’s own evolution on the idea of eradication, as well as of living with the disease, also comes through in the book. “Certainly we will achieve remission,” d’Adesky says. “I think that we are in a constant conversation and dynamic with other things around us, including all of the pathogens. I have a lot of faith in the extraordinary human brain, and also in nature. We’re going to continue to be in a dance with our environment. And our immune system is going to continue to evolve with it. One thing I’m hoping is that we learn to embrace and view disease differently. It’s part of our engagement. And without it we wouldn’t be the way we are. You know, cancer is a good example. People didn’t use to say the word ‘cancer,’ but our evolution has changed about that. We don’t feel the same way about cancer the way we did years ago.”
What is unique about the AIDS story told in The Pox Lover: An Activist’s Decade in New York and Paris is that it proves, yet again, that HIV does not exist in a vacuum. The AIDS crisis is intertwined with other crises, for example, during the nineties, the attacks by the Religious Right in the U.S. and Le Pen in France.
Also, AIDS reporting has influenced the author’s, as well as other journalists’, reporting on other crises. “I think that often people look at people who do AIDS or LGBT reporting or on women’s health issues and see this reporting in a very narrow way, and don’t recognize that covering AIDS is covering a global pandemic,” d’Adesky says.
Only recently, when writing the epilogue for The Pox Lover, could d’Adesky finally allow herself the time to look back at that reporting, and that fight, and count the victories. “It was impressive to see the victories,” she says, “not only [those related to] AIDS, but all these cases of justice that only in the last few years are resurfacing, finally exposed.” She adds, “With a certain passage of time there’s an arc of justice.”
In The Pox Lover d’Adesky writes about the arc of justice. “The nineties taught us that most important lesson. The arc of justice is infinite. It may not bend as quickly or exactly in the place we wish, but if we act to help it along, it will do so faster. And we’ll feel much better, too. I can vouch for that.”
Commenting on the importance of telling the story of the pandemic, d’Adesky explains that people from different generations might have different HIV stories to tell, stories that capture the pandemic of their time. The author’s own story of the AIDS crisis would be a slightly different one, if told today based only on her recollections and not on the diaries she kept during the nineties. If she were to have the chance to go back in time and record her account of the AIDS crisis all over again, she would change many things, she explains. “I would write every day,” d’Adesky elaborates, “because there’s so much happening. I think I would try to engage more marginalized communities, for example Haiti.”
Reading The Pox Lover, listening to the author talk about AIDS in connection with other crises, I wonder if these crises can teach us, today’s and future generations, anything. Are there lessons learned?
“I do feel that we learn from history,” d’Adesky answers. “Definitely.” In the epilogue she talks about Zika, Ebola, and other viruses, and our initial response to their threat. Or, as she describes it, “the first response is a kind of shut down, close the borders, seek control, cast out. This is a very human response to have, to fear. But we have to understand, to understand that a sexual epidemic is going to be socially and emotionally confronted. And so, I think that histories repeat themselves. That histories are learned.”
She pauses, as if to let her thought sink in. Then she laughs, “You probably see that I’m an optimist. That’s because I have been encouraged to be an optimist. For me one very simple lesson learned in the nineties, and I share it with people right now, is that every problem contains its solution.” She further explains, “We need to define the problem, to define the resources and their own limits in terms of how to deal with that problem. And then we have our strategy.
“Certainly we’re in a new decade of AIDS. We need to look back at the lessons of the nineties in terms of how we should be fighting [today’s epidemic]. I think right now the issues of the epidemic in the U.S. force us to confront class issues, racial, and educational issues. We have a not very well documented epidemic that’s associated with the opioid epidemic. We don’t see or hear too much about it. [They don’t have the necessary tools] to protect themselves. I think that we need to be having conversations about those issues right now, and we need to be naming [these issues] and to mobilize around them. Especially with [this] administration.”
During the nineties, in order to stay alive, those on the frontline of the AIDS crisis had to create safety nets. “We tried to save ourselves,” d’Adesky explains. “And I say we, in the grand we—LGBT, HIV/AIDS, Haitian [and] other communities where the stigma was high and there was no money coming in. Communities had to move money from state to local budgets, when they weren’t going to get it from the public health system. We are in that moment now with Obamacare being dismantled.”
D’Adesky further explains that, in order for today’s communities to survive today’s crises, whatever these crises might be, they have to look within and find members who have the knowledge and experience of building these kinds of safety nets. “They know what they did, they know what worked,” she says. “We need to be making those people now tell us how to do it. In other words, learn from the experience and education we have in our communities. Because we have it. Those are the conversations that we should be making happen now.”
And the simplest way to start these conversations is to have town halls, and talk to town and municipal leaders. “Again, if you go back to that very simple formula,” d’Adesky reemphasizes, “in the problem lies the solution. Look at the problem. Take it apart. See what the hurdle is and [find] your way back. And that’s how you build your safety net.”
To learn more about Anne-christine d’Adesky, follow her on Facebook or visit her online at thepoxlover.com.
Alina Oswald is Arts Editor of A&U.