AIDS Death and Chesterfield Mom's Pain 25 Years After

Dec. 1 is World AIDS Day, a day to honor those who died of HIV/AIDS-related causes, to support those who live with the disease today and to encourage others to be tested for the virus. We here in the St. Louis regional Patch.com are honoring the day by telling the story of Pat and Mayer Levy and their son, Michael. For World AIDS Day events in the St. Louis area, check out the St. Louis Effort for AIDS list of activities. 

When Michael Levy was 7 years old, his parents bought him a piano from a Memphis church. It may be big and ugly, as his mother Pat describes it, and it may have cost far more than it’s worth to move it to their Chesterfield home, but he loved it.

Today, the piano sits silent in Pat’s airy, wood-paneled basement, recalling memories of Michael: His fingers hitting the keys, his voice singing joyfully, his “cute round behind” on the bench that holds his sheet music.

Then come other memories: Michael’s lean, gaunt face at the family reunion. His voice as he assured his mother he’d take care of his health problems. The phone call saying he’d collapsed at work and gone to the hospital.

Michael was dying of ARC, AIDS-Related Complications, as HIV/AIDS was known in 1987.

“It didn’t even had a name then,” said Pat. “He said to me, ‘I have AIDS,’ which meant absolutely nothing to me.

“We learned about AIDS the hard way.”

Ten days later, Michael died.

“He faded away to nothing. It was really bad,” she said. “We were with him at the end. “

Pat then did what most parents in her situation at the time thought unthinkable: She put the cause of death in his obituary and openly discussed AIDS at his memorial service. She and her husband took on a new role—as unintended as it was unprecedented—as straight, married, HIV-negative adults advocating for gay rights and AIDS awareness.

“At the time, I was the only one who would talk about it, and I’m probably still the only one who will be frank about it, to be honest,” she said. “I’m still angry. I’d still stay passionate and I’d still stay vocal if anybody would listen to me.”

Michael’s funeral was simple: A service by the rabbi who counseled his family before his death and a memorial service back home in Missouri. Little did she know it would be just the first AIDS-related funeral of many more to come. As she met more AIDS activists and HIV-positive people, Pat said the funerals from AIDS-related deaths came on a weekly basis.

“We went to more funerals in 10 years than most people do in 10 lifetimes,” she repeats, as she thinks about the decade after Michael’s death. “Terrible, terrible, cried through them all. And said goodbye to some wonderful people.”

Pat became a mentor to other mothers, passing out her name and phone number despite rules that hotline workers keep their identities anonymous. She wrote all the thank you notes for donations to the organization where she volunteered. She ran a bereavement group.

“If it sounds like a lot of ‘I,’ it was a lot of ‘I’ because very few people would do it,” she said. “It was always me they called because nobody else would admit to it. Nobody else would talk about it, and I am a very loud advocate for all of these young men who were dying of AIDS—and with nobody! Their families had kicked them out."

She saw nurses at University of California Irvine Medical Center pushing food trays into hospital rooms with their feet, afraid of catching the mystery virus attacking their patients. An entire hospital floor was dedicated to young men like Michael, dying with AIDS.

“We were the only parents there,” Pat said.

Pat describes those 10 years as being full of passion and anger, not just her own, but from everyone fighting for the cause.

“It was like banging your head against a brick wall to get money to get help,” she said. “Everyone was passionate about this fight because they were losing people right and left and not much was being done about it.”

Finally, 10 years of mourning, working, counseling, fundraising and fighting became enough. Pat and Mayer took a step back, limiting their role in the fight against AIDS to financial donations, usually in March to honor Michael’s birthday and death.

“After 10 years, we just couldn’t say goodbye again,” she said. “It’s time for new people with new pain to work through their pain the way we had.”

Now, it’s 25 years after Michael’s death, and the nature of AIDS has changed. A disease first considered a death sentence can now be controlled and treated, and HIV-positive people are living decades longer in 2011 than their counterparts in Michael’s day.

“There is no fight against AIDS,” Pat said. “It’s accepted. There’s no passion. There’s no anger. It’s like diabetes—you take your pills and you do what you do and you live.”

But Pat is still angry. She lost her son, and she seems to miss the time when she saw her anger reflected in the eyes of other AIDS activists.

“Am I angry? Yes. Am I compassionate? Yes,” she said. “But I wish he was still alive to play that awful piano.”

Special Note: Pat Levy will be featured as the Huffington Post's Dec. 1 Greatest Person of the Day. Greatest Person of the Day showcases passionate residents from around the country who are contributing to their communities in creative ways.