Here is another column I wrote for a business magazine in Orange County back in the 90s. I was an AIDS emotional support volunteer (called a ìbuddy,î but actually a sort of professional friend) in the late 80s when the plague was still raging. I ìworkedî with the AIDS Services Foundation of Orange County, http://www.ocasf.org/ which is still in business. One of my buddies was a woman I called Lucila, though that wasnít her real name. The family was in major denial, so I changed names and facts. One thing I did not write was that Lucilaís husband gave her a vacuum cleaner for her last birthday on earth. Really! Hereís a slightly abridged version of my column from April 1, 1993.
My current buddy, whom I met in February 1992 and who has already lived four months longer than expected is a woman named Lucila, who just celebrated her 40th birthday. A native Guatemalan, sheís been married for six years to Arnie, a master sergeant in the Marine Corps [I originally wrote that he worked for a large corporation] and her second husband. Lucila has three daughters, ages 13, 12, and 5.
In addition to her two healthy older daughters, Lucila got something else from her first husband, who has long since disappeared. An HIV-positive drug user, when he left, he left Lucila with AIDS.
Yes, women do get AIDS. [In the early 90s, many people thought only gay men got AIDS; it was the ìgay plague.î] Women are in fact the fastest-growing population of people living withóand dying fromóAIDS. As many as 500,000 American women may be HIV positive [in 1993], but this figure is probably low because feminine AIDS is underreported and underdiagnosed.
Who are these half-million women? Married women like Lucila. Mothers. Straight women. Teenagers and grandmothers. Women who donít know who else their so-called monogamous partners have been with and whose partners refuse to practice safe sex. Half a million normal, ordinary, heterosexual women are infected with HIV. They do not fit the stereotype of the drug-using prostitute.
Lucila was diagnosed in November 1991 when she kept getting migraine headaches and had persistent fevers and night sweats. Within a few months, she developed cervical cancer. She used to weigh 125 pounds and was a beautiful, vibrant woman with thick, glossy hair. [I saw photos of her.] She loved to dance. Thatís how she met Arnieóat a country and western dance. It was love at first sight.
Today she weighs 78 pounds, her hair is nearly gone, and she can hardly walk from the living room sofa to the bathroom. She has maybe 25 T-cells and is so anemic that her nursing aide describes her blood as being close to pale pink Kool-Aid.
Iíve met other women with AIDS. The single mother with the six-year-old son and the mortgage sheíll never pay off. The married 25-year-old who has six children and is six months pregnant. The graduate student whoís already had cervical papilloma virus, aseptic meningitis, oral hairy leukoplakia, and thrush.
How do women with AIDS live their lives? As much like the rest of us as they can. A woman I interviewed a year ago put it this way: ìYour life just goes on,î she said, ìespecially when you have kids. Itís ëMommy, letís do this,í and ëMommy, letís go there.í You canít say no all the time, even if you are exhausted.î
Lucila doesnít cook dinner for Arne anymore and wonít let him help her shower because sheís so ashamed of what her wasted body looks like. Sheís beginning to wonder how Arnie and the girls will get along ìafterwards.î
But donít feel sorry for Lucila. Sheís still got her pride, and in her dreams sheís still dancing. Like women who survive disaster, sheís still doing as much as she can to keep house and teach her daughters to grow up to be strong, beautiful women. Sheís using all the energy sheís got left to ìkeep on keeping on.î
What I wish for heróand I phone her nearly every day to tell her I love heróare understanding and a clear, peaceful death. For her daughters, I wish memories of who their mother was before she became a statistic.