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.

One particular lesbian woman, called Hannah, was what Weston considers his first “warrior.” She took her philosophy from the Native American culture. She was teaching tai chi and yoga classes at TPA because she believed in the power and benefits of moving energy. Hannah believed that one’s physical body can be controlled by one’s mental attitude, and that by combining the power of one’s mind with the power of one’s will, a patient could affect the outcome of the disease process.
    Hannah would end her yoga class by doing a relaxation exercise where she would team up students and have them massage each other so that they could be relaxed and meditative. One time she teamed up with a man whose face and body were covered in very severe KS lesions. Anybody else would have used rubber gloves before touching the poor guy, but not Hannah. She did not hesitate massaging and relaxing him, and was not afraid to touch his lesions. She was completely fearless, inspirational, and motivational.
    And for Kurt she was a tremendous inspiration in strengthening his survival instinct. It was through Hannah that the photographer realized that there were people who could create an inspirational energy in others, and who could give others hope.

Believing beyond the conventional wisdom and, in the process, resurrecting not only as a person, but also as an artist:

    The photographer is more interested in phasing out his drug therapy, keeping the drugs at a plateau level and doing it in a way that would not stress his organs. To him, learning how to deal with his medication begins with learning to understand his entire body, his entire universe—the physical and spiritual part of it—something he learned to master while in Chicago, through his SWAN experience and the first “warriors” he met at Test Positive Aware.
    While doing so, Weston believes that his surviving AIDS has helped him resurrect not only as a person, but also as an artist. Despite all the obstacles, his AIDS and his blindness have offered him a second chance to life in general, and to his professional life, in particular. So, he took his chances and did the best he possibly could with them, while never thinking of giving up.
    “Even when I was living in Chicago and I had the KS lesions, I never really wanted to just give up. I think part of it was the fear of dying,” Kurt Weston confesses. “[But] I didn’t just wait for it to happen. I thought, this is like a battle and I need to be a warrior. I need to go and I need to face this terror in my life head on, I can’t just sit back and let this terror consume me, [but] fight and be aware of everything or anything that’s out there in the world that can possibly help me fight the virus destroying me.”

Believing beyond the conventional wisdom:

    Nevertheless, there is obvious statistical evidence that nutrients and vitamins do help. Examples include studies done in several African countries.
    For a long time, the South African government was against the use of antiretroviral (ARV) medications, sharing the dissident opinion that “HIV does not cause AIDS,” hence the South African AIDS denialism theory that has been studied and talked about in many books and by many experts on both sides of the debate. In Africa, AIDS is sometimes thought to be part of a white-borne racist agenda, propagated by stigmatizing conceptions of African sexuality and Africa as the “origin” of AIDS. Lately, especially after the 2006 International AIDS Conference in Toronto, members of South African Treatment Action Campaign, or TAC, have advocated for the use of antiretroviral medications and for the replacement of the country’s Health Minister, who was denying the medications to the general public, the theory behind it being that, if HIV doesn’t cause AIDS, then the anti-HIV medications are useless.
    There were studies following the progression of AIDS in a person who was not taking ARV medication. Monitoring the evolution of the disease in people who were taking nutrients and vitamins versus those who were not, these studies showed that individuals who received only the nutrients did much better than those who did not receive any nutritional therapy. Present studies show that vitamins and nutrients are also helpful for AIDS patients who are on HAART regimens.
    Running the vitamin coops (in Chicago and also later on, in Orange County, was a big deal for Kurt, because he had to do everything by himself. He had to take the orders, collect the money, send in the orders, get the supplements delivered, unpack them and put them in the right bags for those who came to pick them up or call the people to tell them that their supplements arrived, and to verify that their supplements were delivered.
    It was a lot of work, but the result helped people not only physically, but also mentally. Part of it was because people who were deciding to take the nutrients were actually deciding to do something about their AIDS and to take control of their lives. By taking those nutrients, they were actively doing something positive for their ability to survive. Therefore, the vitamin coop wasn’t only about selling and buying nutrients, or swallowing a pill, but it also had an emotional and psychological element attached to it, an element also found in programs like SWAN that helped people survive and, in the process, become warriors at battle with their virus.

The ingredients of an AIDS warrior:

    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.
    Some individuals just don’t have it in their nature to respond in the way that’s necessary for them to deal with a certain situation. And AIDS is not an easy situation to respond to, especially back when there were very few options and when an AIDS diagnosis wasn’t a very promising scenario in terms of what the outcome would be.
    Kurt Weston learned very quickly that he was either going to sink or swim, that he was either going to succumb to the disease or he could read everything he could find available about AIDS and realize that there was a lot that he could do to affect his future in a positive way. He learned that in order to survive he had to take charge of the situation and to believe that in some way he could affect the outcome of his AIDS. He also realized that he needed to be realistic and not live in denial when it came to his chances of staying alive.

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