It could only happen in the Silicon Age: A transgendered nun living in her parents’ trailer in San Juan Capistrano, California, is the one-woman wizard behind the curtain of AEGIS—the AIDS Education Global Information System (www.aegis.com). The website nets as many as 30 million hits per month, and the free electronic mailing list has more than 3,500 subscribers. While AEGIS bills itself as “the largest HIV/AIDS website in the world,” Sister Mary Elizabeth, 6-foot-1 and 61, is far less forthcoming with superlatives to describe her own accomplishments. But modesty aside, AEGIS—run with six PCs she designed and built herself—is a tour de force, just like its guardian angel. Now the tight-lipped but fast-fingered sister chats with POZ about trading military orders for a one-woman order, being mistaken for a PWA and that infamous herd of cows…
I get more e-mails from you than anyone—sent at all hours. What time do you get up? Between 4 and 5 in the morning. I work until 11 pm or so, seven days a week. For me, this is a calling.
What call does AEGIS answer? Access to timely, correct information about treatment advances and drug interactions can literally mean the difference between life and death. It takes time to surf the Net, so we bring information together on a single server, indexing and cross-referencing it. But we can’t be the “be all and end all,” so we maintain as many links to other sites as humanly possible given the size of our staff.
AEGIS was nominated for inclusion in the UNESCO “Memory of the World Program,”an award for historical documentation—but websites are usually about what’s happening now, not in the past. We want to preserve for all eternity a complete documentation of how humanity at the end of the 20th century dealt with the worst pandemic—in both dimension and scope—since Biblical times. When a cure is found, I believe it’s safe to say that AIDS will become yet another footnote in history. AIDS service organizations and their websites will either cease to exist or redirect them--selves to the next health crisis. Hence our push to get organizations to join with us in archiving their material so that their contributions to the fight will not be lost.
Listen, I’ve got a pile of crazy press clippings about you. Are all these stories true? Yes. I grew up in Pontiac, Michigan, outside Detroit, one of the only Protestant families in a Catholic neighborhood. When I was 8, I told my parents I wanted to be a nun—their response was to send me with a neighbor to a Baptist church. I graduated from high school in 1957 and reported for the Navy the following day. The Navy Reserve discharged me in 1974, after I told them I had been accepted into the Stanford Gender Program for gender-reassignment surgery. Later, I enlisted in the Army Reserve. I was the first person to serve in the military as both a man and a woman. Then I made vows as an Episcopal sister in 1988, and I became American Catholic—an affiliation of independent Catholic orders—last year.
OK. Then what brought you to AIDS? In 1985, I was mistaken for a PWA in a hospital when I was getting my gallbladder removed. I was in a cruddy room in the pediatric ward—my feet were sticking out of the bed! The nurse cranked the bed up and then walked out. The pillow fell over my face, and I yelled for the nurse, but she wouldn’t come over to the bed. Then I let out a four-letter word—I hadn’t taken that vow yet. You’re so vulnerable in a hospital. It gave me some insight into what it must be like for PWAs.
But what about the cows? I heard that it all started with some cows. Maybe you should tell it. My order had been left a herd of cows in Missouri, and in 1988 I went to take care of them. It turned out they had a huge lien on them, but God works in strange ways. While I was there, I met a PWA with KS lesions on his face coming out of the Wal-Mart. I walked over and introduced myself—I scared him half to death, I think. But I told him that I’d help him if he needed anything. It was so rural and isolated out there—they didn’t even have private phone lines, just party lines. I kept thinking about that. After I returned to California, I realized that a bulletin board system, or BBS, was the way to get information around. We went onto the Internet in 1996.
You’ve finally hired a full-time assistant. Do you have any spare time now? I do a little part-time consulting to help pay the bills. Generally, my breaks are spent driving senior citizens to the grocery store or doctor’s office, or just crashing for an hour or two. For me, it’s a daily grind, but one I feel totally committed to—until the epidemic is over.