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Blind AIDS survivor discovers vision beyond sight

By Nicole Saidi, CNN
  • Photographer Kurt Weston was first diagnosed with AIDS in 1991
  • The disease led to a loss of eyesight but didn't stop Weston from taking photos
  • CNN iReporter Alina Oswald says she considers Weston "a warrior" and inspiration
  • Weston's work is being displayed this month at the Kennedy Center in Washington

On June 5, 1981, the virus that would become known as HIV was mentioned for the first time in a medical publication. As we approach that anniversary, CNNHealth takes a look at 30 years of the epidemic that changed the world, through the eyes of people who've lived it. Learn more about AIDS and HIV on, "Sanjay Gupta, M.D.," Saturday, 7:30 a.m. and 2:30 p.m. ET and Sunday at 7:30 a.m. ET.

(CNN) -- Some of Kurt Weston's self-portraits feature shapeless eyes hiding behind amorphous glasses. Others are marred with spidery, distorting streaks.

These otherworldly fragments are his attempt to convey what it's like to lose almost all of your eyesight to complications from HIV and view the world through the peripheral forms that remain.

"I wish I could just turn on the windshield wiper or clean the glass, but it doesn't work that way," the Huntington Beach, California, artist says.

Weston can look back on the past 30 years and see a life profoundly entwined with the history of AIDS. He traces his HIV journey to the months before June 5, 1981, a date recognized by many as the first time a mysterious pattern of illnesses -- later associated with HIV/AIDS -- was identified.

Based on his sexual history, Weston says he believes he contracted HIV in 1980. He suspects that a monthlong flulike illness that year may have been an early symptom of infection with the virus. As the years passed, he heard more and more about HIV during the 1980s. Several gay friends told him they were infected, and he heard stories of people dying of AIDS.

A case of pneumocystis pneumonia, a common infection in AIDS patients, led to his official diagnosis of full-blown AIDS in 1991. His immune system was so damaged by then that doctors told him he likely had had the disease for years.

Cytomegalovirus retinitis, another known complication, began to take away his vision in 1993. Doctors told Weston the damage had probably been slowly progressing for years before symptoms began to appear. Weston recalls one night in particular when he was in a theater and couldn't see the person to his left, but he could see everything else. That's when his vision loss really started to hit him.

Weston experienced other complications that year. A case of Kaposi's sarcoma left visible lesions on his skin, which Weston says made him feel humiliated. Sometimes, he says, people would start whispering about him.

After Weston developed his third case of pneumonia, it became clear that he would not be able to continue working as a commercial fashion photographer. He went on disability in 1993, and has been on it ever since.

Today, Weston says he considers himself lucky to be alive.

I'm not going to let these things cheat me out of the life I want to have.
--Photographer Kurt Weston

"You kind of have to take a warrior mentality," he says. "I'm not going to let these things beat me. I'm not going to let these things cheat me out of the life I want to have."

Becoming a survivor

During the mid-'90s, Weston describes feeling like he was in "survival mode" in which his life revolved around grueling and often experimental HIV/AIDS treatments. One remedy forced him to wear a backpack that would pump chemicals directly into his body through a "PICC line" of tubing inserted through a vein in one of his arms to reach near his heart.

Despite his difficulties, he tried to help others as best as he could. He started a support group called SWAN, or Surviving With AIDS Network. But the virus was relentless. At one point, he watched helplessly as three to four people he knew died per week. Today, he says he believes most of the dozens of support group participants from that time are now dead.

He ran the group from 1993 to 1995, when he moved from Chicago to California to be with his brother. Weston says he thought he was going home to die as doctors said he only had a few months to live.

Although Weston's vision began to degenerate, he says he stayed hopeful and continued to seek medical treatments. In early 1996, doctors surgically inserted therapeutic pellets into his eyes and had him take a special drug. But this new treatment backfired, and the combination of the treatments added to the damage that cytomegalovirus was already doing, leaving Weston's vision almost completely destroyed.

Today, Weston wears a patch over his completely blind left eye and has only peripheral vision in his right eye, which is often marked with streaky "floaters" that "slosh around every time I move my eye," he says. He compares his vision to an "impressionist painting." To prevent further eye damage, he uses special eye drops regularly to this day.

How Weston describes his story, in his own words

Weston says he got the news later in 1996 that he was a candidate to try a new protease inhibitor more advanced than other HIV treatments available at the time. This new development successfully boosted his T cell counts and brought him hope that he could survive.

But the drug came a few months too late to prevent his failed eye treatment, and Weston's triumph was bittersweet. Still, a growing sense of hope inspired Weston to pick up his camera again. He received training in how to live while visually impaired and discovered he could still take pictures. He started to get involved in art shows.

'Something to focus on'

Finally, Weston decided the time had come to vent his frustration about his vision loss through photography. He produced a body of work called "Blind Vision," using mixed materials such as tinsel and foam over glass to convey interruptions of vision.

"You can see my hand gesturing as if I kind of want to wipe away the obstruction in front of my vision," he said. "That was my way of wanting to illustrate the desire to get rid of that obstruction in my vision."

The eerie photos have drawn a huge amount of attention, spawning articles and art exhibitions.

"He's really a warrior. ... What impressed me is his willingness to survive this bitter loss and prevail and succeed.
--iReporter and author Alina Oswald

Alina Oswald, a CNN iReport contributor from Jersey City, New Jersey, wrote a book in 2006 using Weston's story as a lens on the history of AIDS. She titled it "Journeys Through Darkness." Oswald had first discovered Weston while writing for a magazine that covers AIDS-related issues. She says the photography haunted her.

"I was fascinated with his story," she says. "This guy is a fashion photographer; this is his life; this is his passion. Then he became legally blind, and he thought his life is over. He's really a warrior. He went through a lot of things. What impressed me is his willingness to survive this bitter loss and prevail and succeed."

This month, Weston's work is being displayed in Washington's John F. Kennedy Center for the Performing Arts for the fourth time. "Blind Vision" will be part of a broader show called "Shift" looking at artwork created by people with disabilities. Weston turns to digital photography as a way of expressing his visual intelligence.

Delving into the meaning of Weston's artwork

He's also delving headfirst into a new photographic project inspired by a frightening setback in 2008. Weston was diagnosed with a rare abdominal cancer, and doctors feared the tumor would burst and spread like a dandelion. But miraculously, he says, the fears never materialized, and he remains healthy.

Desperate for answers during this time, Weston's family sought the advice of a medium. The medium said Weston would be OK, but he needed to spend time in nature. Weston obeyed, leading to his current project exploring the healing properties of nature.

The ongoing "Seasons in a Prayer Garden" photo series is an examination of the world through nature. The colorful, peaceful images contrast sharply with his tortured "Blind Vision" photos, displaying evidence of Weston's healing process.

Weston says he believes nature has a restorative power, even if it cannot immediately be perceived. Through the vibrancy of the color images, he says he hopes to represent light frequencies visible to birds and insects but not to the human eye.

"These latent color frequencies have a healing and regenerative effect on our minds and physical bodies," he says.

He's returned to work, having recently taught photography at California State University, Fullerton. His current focus is producing art full time.

Weston gets lots of help from his partner and his guide dog. Extra-large computer monitors and magnifying devices assist his work.

Weston says he hopes his creations could be displayed in clinical settings and doctor's offices, possibly making a difference for those dealing with an HIV diagnosis.

"I know what it's like to have to sit in a doctor's office for a very long time," he says. "It would be nice to have something to focus on or mediate on instead of having to sit and worry about what the diagnosis might be."

Weston says dealing with AIDS has been an "amazing journey" and he's thankful that he's been able to return to the work he loves -- and inspire others in the process. And, he adds, having a positive attitude and being surrounded with people who care for you is important.

"I always say to never think your journey is done, because you never know how much time you have and how much you can contribute along the way."

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