Saturday, August 28, 2010

On the Duality of AIDS

On the Duality of AIDS: An Excerpt from Journeys Through Darkness--A Biography of AIDS

With the latest news about steps--maybe baby steps for now--toward finding an AIDS cure, I was thinking about the duality of HIV/AIDS as part of the duality of our life, in general. I remember Kurt Weston's words, when I interviewed him for A&U Magazine and, later on, while I was writing his biography, Journeys Through Darkness. Kurt is an amazing person, one I've met while covering the pandemic. A fashion photographer, he was left legally blind--he cannot see anything with his left eye and has only some peripheral vision, with floaters, in his right eye--due to misdiagnosed CMV retinitis. The experience has forced him to learn how to photograph again. As a result, he has become an award-winning photographer with works showcased in art shows around the country.

Here is an excerpt from the last chapter of Journeys Through Darkness, a chapter I called "Arrival of the Angel," after one of Kurt's images that resembles a scene from one my my favorite movies, Angels in America (those who've seen the movie will recognize the scene). The excerpt deals with the duality of AIDS and the very fine line activists, patients and medical professionals need to walk, in order to continue fighting the pandemic in this day and age.

Hope you'll enjoy the read. As always, thanks for stopping by,

Alina Oswald
Journeys Through Darkness: A Biography of AIDS

Journeys Through Darkness
An Excerpt from Chapter Nine: Arrival of the Angel

"As it happens with everything in life, there are always two sides to a story. It’s part of the duality that governs our entire existence. The same stands true in the world of AIDS, forcing individuals to walk a very fine line in order to keep focused on what’s really important.
front cover of Journeys Through Darkness a biography by Alina Oswald with photographs by Kurt Weston
Journeys Through Darkness a biography by Alina Oswald with photographs by Kurt Weston
One aspect of the duality of AIDS may be explained by the very life-saving medications introduced in the mid-nineties. The HAART regimens had a so-called “Lazarus effect,” the coming back to life from the brink of death effect on HIV/AIDS patients. Before the advent of the new antiretroviral medications, AIDS was a feared disease that sentenced its victims to an agonizing and silent dying process. Back then, too many of Weston’s friends got sick and died horrible deaths. Back then, infected people had to deal with the reality that they were HIV positive and there was nothing that they could do to help themselves. The photographer can still recall the emotional and psychological stress his friends had to bear dealing with their disease, its discrimination, and stigma.

In the mid-nineties, as a direct result of HAART regimens, people living with HIV/AIDS started to get back some of the normality of their lives. Because of the new medications, it didn’t take them long to start feeling well enough to resume their work. They were not “damaged goods” anymore. Rather, they could once again consider themselves successful members of society. For them, AIDS did not equal DEATH anymore. They were not dying of the disease anymore and they refused to be treated as if they were; therefore, they wanted to end the stigma and the “AIDS is a death sentence” mind-set.

But the mind-set didn’t quite go away so fast. Companies were not hiring people who, they believed, didn’t have much longer to live. And so, AIDS patients started to conceal their disease. They could do it because they were healthy enough and had enough energy again. Unfortunately, not long into their new treatments, patients also started experiencing new side effects and, with them, the new face of AIDS, which soon could be easily identified. And so, the AIDS-related stigma and prejudice couldn’t quite go away either.

“People [would ask] me ‘why are you trying to get your MFA or working so hard on your career, why don’t you enjoy the time you have left?’” Weston says, remembering the remarks from when he was working on his MFA in photography. “I don’t see myself as a person who’s gonna die anytime soon and I want to do something with my life… You know how horrific it would be for someone to tell me that ‘I’m not gonna give you a grant to go back to school because you’re basically a dead person’?”
When the HAART regimens were made available, and then, in time, started saving and extending lives, the new treatments slowly began to transform AIDS from a terminal illness to a manageable one. With the occasional exceptions, in Western countries AIDS does not equal SILENCE anymore, nor does it equal DEATH, unless people let it. Therefore, nowadays, some relate living with HIV/AIDS to endurance; to the responsibility of keeping up with daily life-long treatments and dealing with their side effects; to the ability of juggling a variety of issues of a wide range of intensities on a daily basis, while still being able to sustain a high level of normality in life; or to learning the art of living fully, while being infected with a still-deadly virus.

black and white image of a man looking up, his palms behind his back; Arrival of the Angel, photo by Kurt Weston, featured in Journeys Through Darkness a biography by Alina Oswald
Arrival of the Angel, by Kurt Weston, photo published with photographer's permission. Arrival of the Angel was included in Journeys Through Darkness: A Biography, by Alina Oswald, with photographs by award winning photographer Kurt Weston

Yet, sometimes, the very idea of people “living” with HIV/AIDS and not “dying” of it anymore translates into the illusion that AIDS is somehow not a problem anymore. As a result, complacency starts settling in because AIDS is not considered an immediate life-threatening disease anymore.
The non-imminent deadly danger associated with the disease also means less funds being allocated to AIDS support groups. Therefore, non-profits in need of these funds have to find new ways of keeping people interested in the disease and its cause. As a result, there are a lot of mixed messages going out regarding HIV/AIDS, affecting mostly the young generation that has never lived in a time when AIDS was a sure death sentence, and, therefore, cannot understand the magnitude of such a disease.
Most of those who are not infected do not have a clue what it means and what it takes to live with the virus. Several years ago, Kurt and Terry traveled to Sacramento with a group of Very Special Arts [VSA Arts] California members to lobby for the HIV/AIDS budget. One of their constituents went to the office of the Congress and explained why continued funding was necessary. The people of the Congress were totally surprised because they’d been thinking all along that HIV/AIDS patients could take a pill and be done with the disease.

The truth is that HIV still infects and kills a lot of people, even in countries like the U.S.—confirmed by CDC, over fifty thousand Americans are newly diagnosed with HIV every year. The disease remains a killer. While Kurt Weston deals with the fear of dying from AIDS by confronting it, others deal with their fear by surrendering to it, or by choosing to “veg out and live as if they were retired,” as the photographer puts it. It would be easy for him to do the same, to just give up on his fight; to receive his disability check and live off his life. But that kind of surrender has never been part of his genes, not even at times when he has found himself on the brink of depression.

In that sense, Kurt Weston has always been a warrior, yet never considered himself to be one. Rather, the photographer has always thought of himself as more of a passive person and, in many ways, an introvert. The positive energy necessary for his becoming a warrior has come in stages, through his diagnosis and during his “battle” with AIDS. He believes that people are not born warriors, but rather they choose to learn how to become warriors in order to battle whatever obstacles life throws in their paths. “I think that [when] you’re affected by certain life situations, you have to endure, and then you have to react appropriately,” Kurt Weston explains his warrior attitude towards life and AIDS."

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