Wednesday, March 28, 2012

The AIDS Alphabet: W is for (AIDS) Warriors

The AIDS Alphabet: W is for Kurt Weston, AIDS Warrior

Photographer Kurt Weston sees his AIDS as a battle.  And he needs to be a warrior willing to fight the virus that is destroying him.  
      “I never really wanted to just give up, even when I had the KS lesions.  I think part of it was the fear of dying, but I didn’t just wait for it to happen,” he says, explaining his source of positive attitude during the course of our phone interview.
Kurt Weston & Ambrose. Photo by Alina Oswald
      Diagnosed with AIDS in 1991, the award-winning visual artist considers protease inhibitors a miracle that literary saved his life.  But, as he was restoring his health, he was also becoming legally blind, diagnosed with CMV retinitis in 1994.
      “I was devastated because here I had spent my life working as a photographer and as a visual artist and I was no longer capable of doing this… or so I thought, because I couldn’t see anything in focus.  I don’t see anybody’s face,” he says.  “I see… like, if you look at the palm of your hand.  That’s what I see of a person’s face.  So, I didn’t think I could ever photograph again.”
      Fortunately, it turned out he could.  And his first challenge was finishing the 1999 calendar for the Asian/Pacific Crossroads.

The above is an excerpt from my article "Warrior Within," originally published in A&U Magazine--America's AIDS Magazine, an article also available online at, the National AIDS Museum site.
My own Lensbaby Angel now part of the National AIDS Museum collection. 

Dark Angel, himself a kindred soul

During the past decade, while documenting the AIDS pandemic, I've come to meet quite a few AIDS warriors. Each one of them has left an imprint on my life, still visible today. I owe them more than they can ever imagine. These kindred souls have offered me (and others willing to stop and listen)  the opportunity to look at life through a refreshing perspective, one unafraid to deal with the reality of life, as raw, crude and cruel as it is. In the process, it may not always offer a happy story locked inside one of these happy bubbles we've come so accustomed to (unfortunately). Instead, it takes us on the darker side of life, a path I've been on ever since I can remember, and offers the possibility of hope. Through it all, hope shines like a weak (at first) ray of sunshine, trying its best to peek through the blackness. It takes a warrior (in this case, an AIDS warrior) to be able to hold on to that weak light, while still surrounded by the pitch darkness. It takes the "droplets of hope" best selling author Joel Rothschild talks about in his book, Hope--A Story of Triumph. It takes the courage to wake up every day and decide to make the best of it, and help others while at it, like Dab Garner and his AIDS Bear, Anthony Johnson, founder of BOLT (Bringing Our Lives Together), Robert Breining, Founder of POZIAM and many others, be they infected with the virus, affected by it or just wanting to make a difference in putting an end to the pandemic.

Dab the AIDS Bear. Lensbaby Photo by Alina Oswald

One of the warriors who've have an immense impact on my life is Kurt Weston. What makes a warrior, in this case an AIDS warrior and what defines him as an AIDS warrior? Here're a few excerpts from Journeys Through Darkness: A Biography of AIDS, a book that tells the story of AIDS through the story of Kurt Weston, excerpts that deal with the notion of AIDS warrior.

Hope you'll enjoy the read.

As always, thanks for stopping by,

Before I leave, I'd like to ask: Who are your warriors/AIDS warriors and why?

I'd love to hear from you. Thanks again,

Surviving extreme situations, natural and/or man-made:

Journeys Through Darkness
    Kurt Weston believes that any kind of extreme situation, be that a disease, war or natural calamity that people are put in, can bring out the positive or negative aspects of their personalities. In the case of AIDS, this duality holds true for those living with the virus, and also for the others. There are times when some individuals who are not infected consider themselves above the virus and the disease. They see AIDS as a punishment sent by God to those who deserve nothing better.
    The truth is that AIDS is a very human disease caused by a very human virus—the Human Immunodeficiency Virus. Since its worldwide outbreak in 1981, HIV has been perpetually mutating, transforming, hiding and disguising itself inside and on the bodies of those it has infected. Yet, the related stigma and prejudice, the isolation and fear always associated with the disease have stood the course of time. Something else that has been forever associated with this disease has been the mark (or stigma) it puts on its victims. This is only one aspect of what we’ve learned to know as “the face of AIDS,” and its persistent and perpetual transformation. One has to be a warrior to survive something of this magnitude.

    In its early days, the psychological and physical burdens the epidemic brought to patients yielded to destructive, negative behaviors in some individuals. Faced with an imminent death sentence, some of those infected developed a “screw it all” attitude, and went on maxing out their credit cards and living totally irresponsible lives because they knew they were going to die soon anyway and didn’t mind leaving somebody else to clean up their mess at the end.
    Other AIDS patients did just the opposite. They became more responsible for their own lives and for the lives of those around them.
    Kurt Weston met these kinds of people when he started attending AIDS-related workshops at some of Chicago’s AIDS service organizations. Test Positive Aware was the first ASO [AIDS Service Organization] he visited. TPA provided a helpful resource and a link to professionals who could help Kurt with his health insurance and medications, and also provide informative AIDS education. The organization also became a means of communication between the artist and others who were also infected.

Finding other AIDS warriors, guardian angels and kindred souls willing to teach others how to live in a "surviving mode":

    So, Kurt joined their group and listened to what they had to share. And their AIDS success stories touched his life in the most positive way, fueling his own desire to survive the disease. In time, the photographer got to know these early-AIDS survivors better and discovered that they were the ones willing to go the extra mile doing whatever it was necessary to fight the virus that was destroying them.
    To this day, Kurt Weston considers these kindred souls his guardian angels, his first contact with the early AIDS warriors he later met in his life. They helped him take his first steps toward surviving the disease, while injecting in him a belief system that he, too, could turn his fate—his AIDS—around and transform it into something more manageable, into something that did not necessarily have to be a death sentence.
    But learning how to stay alive required the photographer to take on some responsibilities of his own, including devotion and commitment to his life, and also a lot of time, money, and effort. These were the bases of living in a “surviving mode,” which meant focusing solely on living one day at a time, while slowing down his life to bare necessities in order to stay alive.