From the Archives: How One Person Can Make a Difference

Author’s note: for its first 10 years, Test Positive Aware Network was often referred to as “TPA”  or “TPA network,” until it was changed to “TPAN.”

Before there was Positively Aware there was TPA News. And before TPA News there was a young gay man turned activist named Chris Clason.

His story is legendary: How he tested HIV-positive in 1987 and searched for support, how he was told there was nothing for people who were still healthy and to come back when he had AIDS. Not only did he not accept that, but he decided to create the support group he wanted on his own.

So he took out a classified ad in Gay Chicago magazine, inviting other people with HIV to join him in a quest for information and support.

On June 19, 1987, in his living room with 15 other men living with HIV, Test Positive Aware Network was born.

To this day, more than two decades after his peaceful death on Christmas Day of 1991, at the age of 38, Test Positive Aware Network continues to save lives and provide emotional support.

In Clason’s words from the August 1991 issue of PA, “I was mostly interested in information, but I also wanted to hear personal experiences. I did not want a gripe session. I wanted to hear about people’s problems and hardships but with the idea that the sharing could lead to an answer or solution; someone else may have successfully handled that problem and could share their experience.”

The organization he founded has become much more than a twice-weekly support group. TPAN provides case management; syringe exchange and naloxone (a drug used to counteract an opiate overdose); HIV and hepatitis C testing; condom distribution; extensive educational offerings; many support programs, including those for people in recovery; and an AIDS ride, as well as a burlesque show fundraiser (Clason, a born performer, would have loved Chicago Takes Off). The AIDS Legal Council of Chicago offers a drop-in clinic twice a month, as does a local acupuncturist.

TPAN’s crowning jewel is the magazine which grew from TPA News, a thin, mimeographed newsletter stapled in the corner, written by Clason himself. Positively Aware now goes to every state in the nation and has readers around the world and online.

The original TPA News listed local clinical trials and discussed potential natural and holistic therapies, and was a gold mine of often life-saving information.

Questions

Bill Rydwels, one of those first 16 men who met in Clason’s living room, recalls that it was at that very first meeting during which TPAN was created that Chris Clason said, “We have to find answers for ourselves.” Clason also lined up doctors and lawyers to come speak to the membership. The doctors offered both knowledge and hope. Rydwels remembers them promising, “We’ll find drugs for this.”

There was so much to discuss, topics that are still relevant today: What research was taking place? Should they tell their employer they had HIV? How do they tell their families? What arrangements could be made for their death? At the time, many hospitals refused to treat people with AIDS and most funeral homes refused to bury their bodies.

Chris Clason turned out to be right about the need to search for information.

One of the most striking examples of this was the experience of treasurer Thom Hudson, another founding member and a surgical nurse, who traveled to Australia where he learned that patients were taking half the AZT dose that was given in this country. He asked the doctors at a meeting, “Why are we taking the big doses every four hours, waking up in the middle of the night, and having all the horrible side effects, when they’re taking half-doses with no side effects?”

“The doctors said, ‘Oh, the people in Australia don’t know what they’re doing,’” says Rydwels. Later, doses were lowered in the U.S. “Thank God he talked with them, because they were killing us.”

Aware

“Chris was concerned about the antivirals; he was not pro-drugs,” early member Michael Blackwell recalls. “There are a fraction of people who still believe that some of our friends and loved ones died because of those drugs, because of the toxicities. He was more interested in holistic therapies, in energy work. But he was respectful. He agreed to disagree. He never dictated, he always provided options.”

“Thank God for AZT,” said founding member Bernard Brommel. He and his partner Randy joined the first AZT study, but his partner got the placebo, developed AIDS, and died within three months.

Brommel had earlier been in an interferon study he learned about through the meetings, and he participated in seven or eight clinical trials at Northwestern University with Dr. Robert Murphy. He believes they saved his life.

“People who got to be in one of those interferon studies were lucky. Lucky, lucky, lucky,” said Lisa Congleton, who provided support to the members (an “angel,” said Brommel). “Interferon cost thousands of dollars a month. If you didn’t have the money, you basically got your life in order and you died. That’s the way it was.”

Congleton said the men in the TPA group were like “little old ladies” discussing their ailments. But it wasn’t trivial.

“They were comparing notes because their lives depended on it. Here’s the other thing: at that time there were only a handful of doctors available for them. There was a gay doctor at Cook County [Hospital], Ron Stall, who later died of HIV. These doctors were shooting in the dark. There was no information.”

Rydwels said, “I had criticized people using crystals, believing there were energy points on their body. I had to change my mind because if you did anything positive to try to find a cure, you were working against the virus and you were helping yourself. There was nothing that was definite and had a clinical trial behind it.”

Community

Blackwell remembers that “as someone who’s getting their status and getting all freaked out, I was completely reassured by Chris. He was a very emotionally generous person, able to calm people down and make them feel better. He made all that panic melt away. It was because of him I got involved. He inspired me and he challenged me.”

Rydwels agreed, saying, “No one else had what he had. He made you feel like you were becoming a part of his family.”

Brommel, a psychiatrist, now retired, said Clason was very engaging, wanting to know both your interests and what you wanted to contribute. “Those were pretty dark days. If you had some training, that was the time to help. He facilitated it all and encouraged us.

“Those days were so bleak,” he said. “There were absolutely no reliable meds. Yes, some were flying off to California or New York for wild treatments—if they had the money for a ticket and everything else. Most of the people I encountered were desperate and full of fear.”

Former TPAN president Charles Morris said, “It was a time when people were very despairing and there was no hope and no place to go, and information was sketchy, at best. You realized, ‘Oh, I’m not alone.’ Other people are going through the same things. There was a sense of belonging and shared experiences, without which there would have been a sense of isolation. And there was information: high doses of vitamin C, hydrogen peroxide. People were trying all these things.”

Secrecy

“It was a very different landscape to what you know today,” said Lisa Congleton, “so it was an incredibly courageous thing for Chris Clason to do, to gather people who were HIV-positive and hold a meeting in a public place.

“Some people wouldn’t come to TPA,” she said. “Their job might be on the line. They might be seen. There was hysteria and a justified paranoia. Michael [Blackwell] and I had friends who got death threats from the staff at Cook County [hospital, where a great number of AIDS patients were seen]. It didn’t shock us. That was the context in which Chris Clason started this.”

“When he gathered that first group,” said Brommel, “that took guts and courage, because everything back then was anonymous. Everything was first name only. We were afraid of insurance companies. You didn’t know where TPA met until you had gone through a screening. There was no phone listed. You had to know who to ask or find out through word of mouth. For years there was no name on our door. People were afraid of being seen coming to our meetings.”

Laughter before death

Everyone remembered Chris Clason for his effusive personality and for making them laugh, and they loved his drag persona, Beverly Del Vecchio.

“He was a stunning beauty in drag,” said Bill Rydwels. “Some said, ‘Sorry, we don’t want people to have that kind of idea about us.’ It was stupid. We were pariahs and we didn’t want to be worse pariahs.”

“He loved Halloween parties because he could dress up,” said Bernie Brommel. “I went to a party and wondered, ‘Who’s this ravaging, red-haired beauty in stiletto heels?’ I was there a long time before I realized it was Chris.

“That’s what we did to laugh. That’s what we did to have fun, because we could forget who died that week. We would say good-bye at the end of every meeting. That was very sad. It was the most serious thing we did, but people welcomed it because it became a community of loss.”

Cost of living

“It wasn’t all roses being on the first board that first year,” said Brommel. “Like anything else, people had a political axe to grind. And there was no money. Running those ads must have cost Chris a small fortune. Hannah [Hedrick, another “angel”] and I would often cover the rent, and Chris’s parents helped pay for the newsletter and meeting notes to hand out. We passed the hat at every meeting.”

Chris Clason ran TPAN for years with only other volunteers before money was raised for a staff, just as he became ill and moved home to be with his family.

Brommel led a campaign to have memorial gifts made to TPAN, especially after seeing the men’s property go to families that had disowned them.

‘Committed to Living’

Chris Clason had very early on coined TPAN’s motto, Committed to Living, which continues to represent everything the agency does. In that very first mimeographed newsletter, he was prophetic, writing words that are still relevant to the epidemic today.

“TPA has become more than a data exchange. Members have expressed needs on many levels and TPA’s agenda is tailored to address personal, social, and political concerns, as well as medical and scientific issues. We have learned that there is more to life than T-cell counts alone. We are discovering inner strengths and the courage to face head-on all aspects of HIV infection. We have begun to explore new avenues of personal growth: to open our minds to all possibilities; to open our hearts to people who share our concerns, if not our beliefs, experiences, or desires.” (From Test Positive Aware Newsletter, September 1987)

He ended that column by saying, “I hope that we can depend on your involvement to help TPA reach its full potential.”

“The brilliance of his programs and thinking amaze me,” said Bill Rydwels. “And he was a caterer. Bernie and I wrote a letter to the Board, asking that a building be named after Chris. God bless what he did. He helped everyone. Even after 20 years, he still touches many people, and his newsletter is now a national magazine.”

Said Charles Morris, now living in Florida, “My partner and I go to our doctor and Positively Aware is there. When I see that, it’s so good to know that it’s still going strong.”

Read more about Chris Clason’s life and vision, and the early days of TPAN, from these interviews as well as articles by and about him in this edition online and in the author’s blog, Tell It to Enid, for a discussion with his sister Phyllis Stover and nieces Jill Stover Martinez and Karol Clason.