Kathyn and Jeffrey Vaughan shared the typical goals of a newly married couple. They dreamed of buying a house, growing a garden and traveling. Eventually they would settle down and have kids. That was 1987. Today, Kathyn's reality is profoundly different.
'Two months after our wedding, I was diagnosed with HIV,' the 43-year-old Portland resident recalls. She describes the moment she got the news as having an out-of-body experience.
'I saw my life flash before my eyes. The doctor told me I would have two years to live, but if things went exceptionally well I could maybe live six years. I held onto the six-year life expectancy like a lifeline.'
At the time, infected women were rare, research and treatment were directed toward men, and the prognosis for both genders was dire. Once considered terminal, AIDS is now considered a complex chronic illness.
Tom Richardson, coordinator of Oregon's AIDS hotline offered through Cascade AIDS Project, explains the new challenges: 'The face of AIDS is changing, with women now making up 16 percent of Oregon's HIV-infected population. This is now a family condition where we find ourselves assisting whole family units, including the children of infected parents.'
Kathyn struggled with trying to figure out how she'd become infected. Before she met her husband, while living in New York as a flight attendant, she dated a fellow attendant whom she later learned was promiscuous. At first, she believed the relationship to be the source of her infection.
Two months after Kathyn was diagnosed, Jeffrey tested positive for HIV. Kathyn was devastated and felt guilty. They discussed their past sexual experiences and when the discussions failed to turn up any details that would lead Kathyn to believe otherwise, she carried the load of responsibility and guilt.
'However, my mother continued to question how I got infected,' Kathyn says. 'She kept in touch with my ex-boyfriend, who continually turned up negative for the virus.' With this information, Kathyn went back to questioning her husband. The discussions proved fruitless. How they became infected remains a mystery.
'He wasn't a drug user,' she says, 'and AIDS was still confined mostly to the gay population. I'm always going to wonder.'
Jeffrey's battle was short-lived, with his juvenile onset diabetes exacerbating and accelerating the disease. He died at home four years after he was diagnosed.
'I took care of him while working full time,' Kathyn says. 'I lost 30 pounds. He had severe dementia at the end, falling out of bed and hallucinating. No way was I going to put him in a nursing home.'
Kathyn's other motive for keeping her husband home was to see firsthand how the course of AIDS might eventually progress for her.
'Instead of experiencing fear, it made me vow that it would never happen to me this way,' she says. 'I would fight with everything I had.'
She's had some luck along the way. Kathyn's illness is kept at bay in part by a new classification of drugs. An 'entry inhibitor' called T-20 is among the fourth classification of drugs discovered to treat the disease. Although not yet approved for widespread use, the Food and Drug Administration offers the drug to a certain number of HIV-positive patients. Kathyn's physician, Dr. Jim Sampson, explains that T-20 works by blocking the virus from attaching to and damaging healthy 'T-4' cells (immune system communicators). Kathyn gives herself injections twice a day.
She is surprisingly upbeat about the past. You won't hear pity or resentment in her voice. With family encouragement and employer support, life is amazingly normal. Kathyn is still with the travel agency she worked for when she was diagnosed, and her employer has created a job tailored to her needs so that she works from home doing computer work.
'I don't stand out as anyone different,' she says. 'If you passed me on the street, there would be no clue that I am infected.' Her voice falters, however when asked what part of a normal life she most wishes she could have. 'It remains a crushing blow not to have had kids. That is the thing I will never get over. Whenever I hold a new baby in my arms, I cry.'
Kathyn also volunteers at Cascade AIDS Project and notices the way the agency has changed focus due to the shifting HIV-positive population.
As Richardson explains, 'While the drugs are helping people live longer, they still need considerable assistance in maintaining their life. Just as many people continue to be diagnosed, so that our caseload is bulging. Add to that the problem of shrinking funds and we, as an AIDS agency, can use all the help we can get.'
To volunteer for Cascade AIDS Project or the Oregon AIDS hot line, call 503-223-5907.