Written for the “Celebrating Roche People” internal newsletter of Roche Pharmaceuticals

Photographer Kurt Weston — an AIDS patient diagnosed with CMV retinitis in 1994 — was one of 21 artists featured in Share Your Vision, a New York City juried art show supported by the pharmaceutical company Roche and presented by the non-profit group Visual AIDS to help raise awareness about CMV. The award-winning California resident is committed to his art and activism.

Kurt Weston thought things could not possibly get any darker. At 30, he was diagnosed with full-blown AIDS, and his devastated immune system quickly succumbed to severe AIDS related (PC)pneumonia and Kaposi’s sarcoma (KS). On top of that, he started to lose his eyesight. He could no longer continue his work as a sought-after beauty industry photographer– a career he truly loved.

“I was devastated. I couldn’t believe that the thing I focused my whole life on, my passion, was robbed from me,” he recalled. But things did get worse.

With KS lesions all over his body, a third bout of (PC)pneumonia and eyesight spiraling to legal blindness because of belatedly diagnosed CMV retinitis that also attacked his esophagus, Kurt was told he had six months to live. He packed all his belongings and left his native Chicago to move in with his younger brother, Paul, in southern California. “I came out here to die,” he said simply.

But shortly after his 1996 move, protease inhibitors, a new class of HIV/AIDS therapies were approved. Within months, Kurt’s immune system started to turn around.

“It was a whole rebirth for me. I cannot thank the pharmaceutical industry enough. I was literally saved by the new medications,” he said.

Despite his returning health, his eyes were devastated by the CMV, or cytomegalovirus, retinitis. He is totally blind in his left eye; his right eye has only slight peripheral vision.

“My view of the world is similar to looking at an impressionist painting. It is blurry, speckly, out of focus. Nothing is clear,” he explained. But with characteristic determination, he attended the Braille Institute in California and the Foundation for the Blind, learning how to use visual assistance devices.

Sharing His Vision

Although he learned to negotiate his visual loss fairly well, Kurt never dreamed he would ever be able to peer through a camera lens again. But he nervously accepted an invitation in 1998 to do the photography for an art calendar to raise money for a non-profit organization called Asian Pacific Crossroads. Using magnifying devices and special glasses, he achieved some breathtaking shots.

“Even though I don’t see the subject in focus at all, a combination of the visual aid devices and my years of experience allow me to take a good picture. I can just tell when the image is in focus,” he smiled.

For Kurt, the calendar was a springboard into the world of art photography. Since then, he received grants to purchase equipment and build his own darkroom, and his works have garnered awards and been shown in a number of fine galleries.

Most recently, he was one of 21 artists who won the national Share Your Vision juried art competition supported by Roche and presented by the non-profit group, Visual AIDS. It was designed to help HIV positive artists raise awareness of the impact of CMV retinitis on the lives of people with HIV and those who love them.

The 21 winning entries, selected from a field of 400, were displayed at New York City’s Artists Space gallery from Oct. 22 through Nov. 1, 2003. Kurt’s 16” x 20” black and white photographic self-portrait, “Peering Through the Darkness”, is a literal and metaphoric glimpse at his journey beyond sight.

“I feel very blessed, being able to do art photography that is going to have a lot more longevity. I guess its God’s little joke, having someone who is legally blind do so well in the visual arts,” he said.

He hopes that his award-winning photograph — which dynamically depicts his hand pushing away the obstructions to vision — is a strong message of prevention to anyone at risk for CMV.

“If they see what CMV can do, I hope they will do anything to avoid it,” he said.

Despite his extremely positive attitude, not a day goes by when Kurt is not reminded about his disease. “I wake up every day in a visually distorted world. It is a 24/7 reminder of what the [AIDS] disease has done,” he said.

That is why he has long been an advocate for awareness about the disease and works tirelessly to try to stem the spread of HIV/AIDS. Back in Chicago, when the primary AIDS treatment was AZT, his quest for understanding and knowledge prompted him to found the Surviving With AIDS Network (SWAN) and NET (Nutritional Education and Treatment). After moving to California he was invited to join the federally-funded Orange County HIV Planning Council and Very Special Arts California, started by the Kennedy family 30 years ago to help disabled artists.

“Sometimes it is hard to remain positive, but I’ve been around people who are totally blind, or people who can’t walk and I think, I can still walk, I can still photograph,” he said. “In the end, it is all about being involved and being a productive person in society. What makes life worthwhile is what we can do to help and assist other people” and people are what Kurt’s photographs are all about. Enjoy your journey through Kurt’s website and experience his visionary photographic art.