Anger doesn’t suit Sharon; she doesn’t like to put her immune system, weakened as it is, through the stress of it. From the get-go, she took a holistic and at times medically controversial path, using meditation to guide her treatment and visualization to help her immune system fight the virus. When AZT, the first antiretroviral drug for the treatment of HIV (it interferes with the virus’s replicating process), was approved in 1987, she was told to get on it fast—if not, she would have only six months to live. A person with a healthy immune system generally has 500 to 1,500 CD4 cells (also called T cells), the “generals of our defense system,” as one doctor puts it—but HIV takes them out. When the count drops below 200, the diagnosis shifts to AIDS and drugs are prescribed. Sharon refused, convinced she’d be better off without putting toxins into her system. Jeaneen changed the sheets as her mother soaked them with night sweats and cleaned up the diarrhea when she couldn’t make it to the bathroom. “People freaked out once they found out she was infected,” Jeaneen remembers, now 32 and a professional photographer. “They didn’t want to have anything to do with her.” That didn’t stop Sharon.
In 1990, she started the Women’s HIV/AIDS Support Group in Los Angeles. “One woman showed up,” she says. “I thought, 'There’s got to be more out there.' So I changed the name to Women Faced with Life-Challenging Illnesses, and more started coming.” With Jeaneen volunteering as a teen HIV peer educator, Sharon became increasingly active. In 1992 she testified before the Centers for Disease Control and Prevention to argue that women-specific conditions, such as cervical cancer, be included in the diagnostic criteria associated with AIDS, and the CDC issued revised guidelines in 1993. Until then, there had been no official acknowledgment that the disease can affect men and women differently. She also continued her work with AIDS patients, teaching them alternative healing techniques, and as an ordained metaphysical minister, performing many of their funerals. “These were absolutely the most compassionate, loving men that I’d ever met, and here they were, down to 100 pounds with KS [Kaposi’s sarcoma, a cancer that causes purplish lesions] all over their body. Then in ‘93 we started seeing women die. Out of those who started right after me, I know only one who has survived.”
In 1994, depleted by grief, she moved to the red rocks of Kayenta, a starkly serene suburb of St. George, Utah. Sharon felt at peace there until she was felled by a one-two punch of PCP (pneumocystis carinii pneumonia) followed by MAC (mycobacterium avium complex), both potentially deadly infections common to AIDS patients. Her doctor, Teresa Bowers, MD, started to worry that Sharon wasn’t going to make it and summoned the family.
“After seeing her at the hospital,” says her father, “I went right to the funeral home and made arrangements. I paid for the whole thing. That’s how bad she was.” Then he called a priest.
“What are you doing here?” Sharon asked the clergyman when he showed up the next day.
“Well, do you want your last rites?”
“No,” Sharon said firmly. “I don’t want my last rites.”
But in truth, she had lost her will to live. The only thing she needed to do was to see Jeaneen, then 21, one more time. Her daughter flew from Los Angeles to the hospital as fast as she could.
We Hear You!