Wynn Wagner Helps Build The HIV/AIDS Information Superhighway
Originally Published in A&U Magazine
When Wynn Wagner tested HIV+ in October 1995, he was taken completely by surprise. Wynn tested when he entered into a relationship with Rick Wagner (Rick changed his name from Sande soon after they became a couple). Wynn was horrified because he had practiced safer-sex since the causes of HIV were announced in the early ‘80s.
Wynn describes his reaction to the devastating news as being “akin to living the last period of the day on the year’s last school day: the day does not go by quickly. I said, OK, let’s get on with the next thing – I am bored with this existence here. If I am going to die anyway, let’s get it over with. I was looking towards death. Snapping out of that has remained an ongoing battle.” Wynn smiles and admits, “I got on with my life after getting off of the pity pot and flushing it”.
Wynn is a world-renowned computer systems designer and programmer who has helped prevent hundreds of suicides, brought comfort to thousands of people newly diagnosed with HIV, raised over a million dollars for AIDS charities and provided a way for medical professionals, researchers, and lay people alike to get up-to-date HIV information from Africa to Chicago to Vietnam.
Wynn, who describes himself as a “Code Diva,” is a technical manager by day, part owner of a pagan/spiritual store by night, and consults (or as he says, insults) with his partner’s computer web hosting and design business, Divanet Services in Dallas, Texas.
During college Wynn took a computer course to fulfill a dreaded math requirement. Wynn shares, “I was an English/Philosophy major. I hated math. I was told that computers used logic not math. As a philosophy major, I owned logic so I signed up for a computer class.”
Ironically, Wynn’s computer work in the 1980s was a boon to the AIDS community. In the early 80’s, Wynn developed Opus, a software package that 95% of the networked Bulletin Board Systems (BBSs) in the world ran on. It was a primary system for sharing files and emails before the advent of the Internet. If users wanted to get information from other computers, BBSs were the way to go and Opus was the BBS of choice. Opus users included major corporations, the U.S. military, hobbyists interested in subjects such as space exploration, and even the Sandanistas. Some of Wynn’s early design work on Opus can be found in the inner workings of today’s Internet.
Wynn could have made a personal fortune from Opus. Upset over losing so many friends to AIDS, Wynn decided to have all the money OPUS earned go to early charities. Corporations, governments, and individuals all had to donate money to HIV research and care before they could run OPUS.
“And they all wanted to run OPUS,”; Wynn adds with a smile. “I got a thank you note from somebody saying my software helped in the attempted overthrow of Gorbochov’s Soviet government in the late 80s. They said it was the only software that could get email through the phone system over there.” It’s estimated that Opus has raised over a million dollars in charitable donations.
Wynn sheepishly grins, while sharing the story of a new release of Opus, “Opus was in such demand that a new software release was downloaded in the early 80s from my computer to users on five continents within an hour of its release, which caused long-distance phone service in and out of Dallas to crash.”
He adds, “I still get email concerning Opus. In fact, I got an email in December 1999 asking if Opus was Y2K compliant. I responded, Opus wasn’t even leap year compliant, for crying out loud.” Fortunately, Wynn treats everything in life with a sense of humor; it’s his pressure relief valve.
In the mid 90s, Wynn was convinced by his partner Rick that he could be of help to AEGiS, [A&U, October/99] which was in the process of converting from a BBS to a web site. Currently, there are over 750,000 documents on AEGiS (growing daily) making it one of the world’s largest web sites, averaging 370,000 user-sessions per month; it has become the journal of record for the epidemic. Documents range from news articles to government reports and statistics to medical information and scientific studies. AEGiS is searched worldwide via the Internet by medical professionals, scientists, government officials, and people living with HIV/AIDS, educators and health agencies.
Wynn mentions, “I once got a thank you note from a doctor in Viet Nam saying that AEGiS was the only reliable source of up-to-date treatment information available to him.”
Wynn was the system architect and designer of the web site and wrote the site’s user interface and architecture. Sister Mary Elizabeth, who developed AEGiS, was the subject matter expert, but wasn’t a “web wonk.” So, Wynn created utilities that transformed articles into web pages.
The design of the site is his, along with the wrappings and plumbing underneath. Wynn describes, “taking AEGiS from a BBS to the Internet was like taking a DC3 to a 747 in mid-flight.” He worked on the web design while the BBS was still live. The paradigm shift in technology made AEGiS’s information available in a much easier and readily accessible format to a significantly larger audience – www.aegis.org
When Wynn tested positive, he searched the Internet to find out what to do. It surprised him how little help there was and much of it was hopelessly out of date. So, six months later he wrote “Day-One” in an hour and immediately uploaded it on AEGiS. “I wrote it for the person who has just found out that they have HIV.” It’s been translated into Spanish, German, French, Italian, Portuguese, and Indonesian and soon will be translated into American Sign Language (ASL) for the hearing-impaired. A recorded version, read by Wynn, is the number one document requested on AEGiS and can be found on the Internet at: www.aegis.com/topics/dayone/.
“Day-One” encourages readers by relating to them. “You are in the right place if you just found out you have HIV. Yeah, me too. This web page is the beginnings of your survival kit. I’m not a doctor or professional counselor – I’m just a person with HIV, and I’ve gone through the same thing you’re going through.” He suggests strategies for finding the right care, being good to oneself, gaining knowledge, avoiding outdated information and approaching treatment as a life and death situation.
Not surprisingly, Wynn uses humor and warmth to reassure readers that they can live with AIDS. “Hearing you have HIV is like hearing a death sentence. It can ruin your day. It ruined my whole week. But I’ve learned about people who are still alive and healthy and happy 15 years after being diagnosed.”
Not a week goes by that Wynn doesn’t receive thankful email. One recent missive read, “I can’t tell you what your ‘Day-One’ meant to me. I was just diagnosed and my world felt like it was crumbling, I found the AEGiS site and your article. It helped save me day by day. I am starting to put it all back together. Every time I read it, I feel less desperate and less helpless. You helped me more than you will ever know.”
Another email read, “As I read your story and your words of encouragement, the tears streamed down my face as they are right now. To give hope is the greatest of gifts. Thank you for your hope. I need it. I am humbled by your humanity.”
Sister Mary Elizabeth states, “Wynn may never realize just how many people he has helped, but I suspect that the numbers are in the tens- [and maybe] hundreds- of thousands.”
Wynn’s technical computer expertise has made life-saving knowledge accessible to millions, and his compassion has reached out to those who need it most. Wynn Wagner is proof that one person can make a big difference: quietly, and without fanfare. “Fanfare?” laughs Wynn. “No, I like what Congressman Barney Frank said once: sit down, shut up, and row.”
John R. Selig is a free-lance writer and photojournalist living in Dallas. He contributed profiles and photographs and was a Consulting Editor to the book “Uncommon Heroes,” and contributed to the book “Telling Tales Out of School.” He was one of eight activists on the National Steering Committee of StopDrLaura.com.