A Life of Service
It’s been years since there was a sofa in this San Juan Capistrano living room. It had to go to make way for the bank of computers. The computers had to come in so Sister Mary Elizabeth Clark could do her chosen work among the afflicted, the curious, the dying.
Operating out of her parents’ home, Sister Mary runs what has become the world’s most comprehensive interactive computer library on AIDS--the AIDS Education Global Information Service, or AEGIS.
What began seven years ago as a simple bulletin board--essentially a computer chat room where users had to dial in directly--expanded to the Internet last year and is now a premier, easily accessed resource for anyone interested in learning about the disease.
The AEGIS home page, https://www.aegis.com, gives access to some 500,000 articles on AIDS and HIV. The articles are culled each day--with permission--by Sister Mary from sources as diverse as newsletters and magazines, and the National Library of Medicine and the Centers for Disease Control and Prevention.
“When we went online in 1990, we had one phone line, and the computer sat in the bathroom,” said Sister Mary, 58. “We could only go on between 8 p.m. and 8 a.m. because we were using our [house] phone line.”
Sister Mary’s one-phone-line operation is now a complex computer center with a high-speed transmission line hundreds of times faster and with the capacity of 24 regular voice lines. Its primary sponsor, Roxane Laboratories Inc., of Columbus, Ohio, has pledged $119,000 in funding through 1998.
Today, the site routinely handles 40 visitors an hour, many of whom stay on for hours to search the latest medical bulletins. On a recent weekday afternoon, usage peaked at 307 in one hour.
A scroll of users shows origins such as the Cuyahoga County Public Library, the Navy’s David Taylor Research Center in Maryland, Saskatchewan Institute of Applied Sciences in Canada, Poland’s Regional University Net and the Mayo Clinic.
The bump in users followed an international antiviral conference in August in Toronto, where the Web page was displayed on two large-screen computers. Today, World AIDS Day, is likely to bring even more attention to the site.
Just as Sister Mary’s living room doesn’t look like most others, neither do the twists and turns her life has taken.
She is the sole member of a religious order she founded. And she has the distinction of having served in the U.S. military as both a man and a woman.
In 1988, Sister Mary founded the Community of St. Elizabeth, a nonprofit religious organization. She took her vows at St. Clement’s by the Sea Episcopal Church in San Clemente, pledging a life of poverty, chastity and obedience and dedicating her life to serving God. She did so without the sanction of the church hierarchy.
Thirteen years earlier, while in her mid-30s, she underwent a sex-change operation. As Michael Clark, a Navy chief petty officer, she felt like a woman trapped in the wrong body. She became Joanna M. Clark, later enlisting in the U.S. Army Reserves as a sergeant first class.
She’d disclosed her medical history to local recruiters, but higher brass in Washington, D.C., were not interested in dealing with her situation. Her enlistment was voided by the Army. She sued and in 1982 won a $25,000 settlement and an honorable discharge.
Even now, Sister Mary is reluctant to discuss those difficult years, focusing instead on AEGIS and its worldwide reach.
“As long as no one knew my history, everything was fine,” she said. “As soon as it becomes public, it’s, ‘Abandon ship, and don’t bother lowering the lifeboats.’ ”
Facing a “deteriorating relationship” with the Episcopal Church, she jumped at an invitation to leave Orange County for rural Missouri.
It was there that she discovered the need for information in isolated areas that led her to develop AEGIS.
In town one day, she spoke to a young man who was living in fear that his neighbors in a community where phone calls were conducted over party lines would learn he had AIDS.
“He didn’t have anyone to talk to,” Sister Mary said. “In that area, if anyone found out someone had AIDS, chances are their farms would have been burned. He had nowhere to go to find out about the disease.”
She decided that the best way to help him was to head back to Orange County and begin working to develop her computer network. The name of the service--AEGIS, for AIDS Education Global Information Service--was the inspiration of Jamie Jemison, among the first to go online a decade ago with a computer bulletin board for AIDS patients.
In addition to running the service, Sister Mary cares for her aging parents, who share their mobile home with her and her computers.
“This wouldn’t have happened except for Mom and Dad being blind and needing help around here,” she said. “I don’t take a salary. If I had to pay rent or have another job, I never would have been able to do this myself.”
And operating the service has been a match for her desire to provide comfort to those in need, to reach the “outcasts” of society.
“Of all the things I’ve done in my life, military-wise, or working with children, I don’t think I’ve had anything in my life that I’ve had more passion for,” she said. “I really can’t put it into words. When you see letters from people and you know that you’re helping them, that’s what it’s all about.”
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Supporters and users of AEGIS have the highest praise for Sister Mary and her work.
James Allan Maytum, who logs on daily from Valencia, Spain, calls himself a “fanatic” about Sister Mary. Maytum, born in Chicago, moved to Spain in 1992 when he was found to be HIV-positive. His drug therapy at the time produced toxic reactions that nearly killed him around Christmas 1995.
A new mix of drugs restored his health, but another toxic episode sent him scrambling to the computer, where he found AEGIS. Ten days later, he received a voluminous package of information on drug therapies from Sister Mary that he brought to his doctor. The new drug combination worked.
“What can I say more than I sort of feel that I owe my life to AEGIS and Sister Mary,” Maytum said from Spain. “She’s truly God’s messenger. She’s achieved what really is the largest and best HIV-AIDS database in the world.”
Tom Sawyer, senior product manager at Roxane Laboratories, learned of AEGIS about two years ago. At the time, the company--a U.S. subsidiary of a German-based pharmaceutical corporation--was developing its own Internet site and looking for ways to promote AIDS education electronically. After a visit to San Juan Capistrano, Sawyer signed Roxane as a sponsor.
“Sister Mary had a lot of vision about what she wanted to do, and she was very open to ideas,” Sawyer said. “So were we. We wanted to be a sponsor and a contributor. We wanted people to point to us with a lot of respect. It was a wonderful decision for us to get involved. We’ve made a long-term commitment to Sister Mary.”
Father John, a priest at San Felipe de Jesus Catholic Church in Capistrano Beach, met Sister Mary in 1990, when she was called to the hospital to help an immigrant farm worker who had lost his legs in a train accident. They’ve met weekly ever since.
“Her work has turned out to be a tremendous blessing to our brothers and sisters with AIDS,” Father John said. “Her work for Juan Carlos had us meet, but I so admire the work she’s doing for the AIDS community.”
“AEGIS tries to be the journal of record for the epidemic, and it succeeds in doing that,” said Wynn Wagner, a software manufacturer from Dallas who helped design the Web page.
Updating AEGIS and responding to e-mail takes Sister Mary up to 18 hours a day. She researches articles and rewrites them into files that can be converted to the language of the Internet and posted on AEGIS.
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While she’s had volunteers in the past, it’s a task she now handles alone, every day.
Her latest project involves a search for grant funding for translators to convert AEGIS’ library into Spanish. She’d eventually like to have the service available also in French, German and Dutch.
Wagner, the page designer, said he continues to try to devise programs to help make Sister Mary’s workload lighter.
“If she ever gets burned out, AEGIS is in serious trouble,” Wagner said.
But she appears unconcerned about burning out.
“This is strictly an act of love,” she said. “My vow was to God, not the church. I knew the need was there. This mission was part of his plan.”
