Photo by Meredith Parmelee [image not available]; San Juan Capistrano, Calif., 11.06.02; Profiled in POZ, 11.99
Termites are a problem here in Southern California. AEGiS [the AIDS Education Global Information System website] is housed in a 27-year-old home, a choice appetizer for dry-wood termites. No other site has 750,000 HIV files covering May 1980 to the present -- fully indexed, cross-referenced and keyword-searchable! When Terminex came, we had no choice but to shut down everything for three days. The exterminators sealed the house with a large tent, then gassed the little critters. The response to our first-ever shutdown was small -- two or three messages wishing us good luck. I spent my first day off fixing a friend’s computer. Then my father came down with the flu.
I generally start my day around 0500 and finish up around 2200 -- that’s 10 p.m. for you nonmilitary readers. Up until two years ago, I handled all content myself, but AEGis now has a staff of five, with three of us in-house working on content. In scanning through the daily AIDS “catch,” we try to select news that is most relevant. I bounce around doing maintenance, linking references and negotiating new resources. We code and post 3,200 new articles each month. Unfortunately, user support has dropped significantly since 9/11. To keep going, we really need those $10 donations from visitors!
I had a deep-seated desire for religious life from about age 8, but I served in the Navy from 1959 until 1974, when I was discharged after being “diagnosed” as transgendered. In 1976, after gender-reassignment surgery, I was invited to enlist in the Army Reserve. My immediate chain of command knew from day one that I was transgendered, but it wasn’t until 22 months later, when the Department of Defense became aware of my identity, that I made world headlines as the first person to serve in the U.S. military as both male and female. Eventually I decided that rather than blowing up the world, it was better to try to help people.
When I made my vows in 1988 at an Episcopal Church ceremony, I was clothed as Sister Mary Elizabeth. Then my “history” made headlines again, and the church jumped ship. But I had made my vows to God, so I chose to remain under them. In 1997, the American Catholic Church -- an affiliation of independent Catholic orders -- invited me to join. But I don’t think of myself as a nun. Nuns are cloistered, sisters are not. So I’m a sister. My cloister is a room full of computers.
The stress of going it alone as a sister made me move to Missouri for a while -- to herd cows! It was there that I met two PWAs struggling to survive while isolated from both medical care and information. This is when I got the idea for the electronic bulletin-board system that later became AEGiS.
I’m not HIV positive. However, another reason I got involved with AEGiS was having a nurse tell me I had AIDS while I was in a hospital bed recovering from gallbladder surgery. I knew there was no way I could be HIV positive, short of having received contaminated blood during the surgery, but it made me realize how vulnerable PWAs were.
I’ve been taking care of my parents for the past 10 years. My mother passed away in December 2001, so it is just my 91-year-old father now. AEGiS actually occupies what used to be their living and dining rooms. When word got out that my mother died, we received condolences from all over the world. My father appreciated that -- it helped him understand just how important AEGiS is.
The personal challenges I face are aging and poor health, but these are miniscule compared to what we are all facing right now: George Bush and a Republican Taliban Congress, more interested in killing than saving lives. There are days I get so sick of AIDS, I just want to go outside and scream, “Why doesn’t anyone listen?” That’s what keeps me awake at night: the thought that a cure won’t be found in time, and AEGiS will never complete its mission.