PITTSFIELD – Tom O’Leary was proud of his Irish heritage and loved to bowl.

Steven Beals was an architect who loved cooking, horseback riding and playing Monopoly.

George Lannon was an artist, as was Michael Apuzzo, who also was a lawyer who loved Betty Boop and Felix the Cat.

These are several of the names that graced the 12-by-12-foot section of the AIDS Memorial Quilt that was on display Sunday at the First Universalist Church. It is the 20th anniversary of the quilt, which travels across the country in sections and now contains more than 40,000 squares that honor AIDS victims.

As poignant as the quilt is, the statement made by Jean Lavigne of Orono seemed to move visitors the most, when she spoke about her personal struggle with HIV-AIDS.

Lavigne was diagnosed with AIDS 20 years ago and today acts as an advocate with the Eastern Maine AIDS Network and other groups.

Sitting on a stool, Lavigne quietly shared her history. She told of the disease that affected herself, her son and her husband, a hemophiliac, as well as her husband’s brother, wife and son.

“The New York City hospital’s best advice was to go home and die,” Lavigne said. “There was no cure. No medication.”

She recalled seeing armed guards on AIDS wards, children too sick to hold their heads up, babies too ill to cry.

“This disease took strong, young people and made them skeletons of themselves,” she said.

But beyond the physical destruction, Lavigne said, it was the social stigma that was so difficult. “There was the opinion that ‘regular’ people don’t get AIDS. There was indifference on the part of the government to act, indifference by religions that normally would have been so compassionate, and indifference by health care providers who withheld care.”

This led AIDS victims to live isolated lives, and many died alone, she said. “I learned that silence did equal death.”

Lavigne said, “Early activists were regular people driven by the fact that no one else was doing it.”

When her nephew died in 1988, no funeral home would take his body. The stigma of AIDS was palpable when her husband died in 1990 and her brother-in-law died in 1992.

After moving to Maine in 1992, Lavigne began looking for a sense of community. She quickly discovered that one person with HIV-AIDS may never meet another person with HIV-AIDS, particularly a woman. And throughout it all, her personal health was deteriorating. For a three-year period, she spent much of her time in bed suffering from the side effects of her potent medications.

“I became an activist because there was nothing left to lose,” she said. “Half of the people that worked with me to change Maine’s medical policies were sick half of the time. Today, half of them are dead.”

But, she said proudly, “today, more than 300 people in Maine have access to medicine because of those changes we worked to make.”

Lavigne still struggles with her disease daily. She almost died this spring while participating in clinical trials for two new AIDS medications.

She speaks softly and her physical strength is limited. But she is still dedicated to AIDS education.

“I am not going to be silent and die,” she said.

During Sunday’s AIDS service, led by the Rev. Margaret Beckman, drums and bells sounded every eight seconds, which is how often a new person is infected with HIV. Worldwide, almost 40 million people are infected. “Every 15 minutes, another 100 people become infected,” Beckman said. More than 8,000 people die daily of the virus and more than 13 million children have been orphaned.

As the congregation’s children left the sanctuary to head off to religious education classes, Beckman said, “Maybe when they do this, the numbers won’t be so staggering.”

Sharon Kiley Mack may be reached at bdnpittsfield@verizon.net or 487-3187.