After the Tragedy, a Call to Arms
updated 02/04/1991 AT 01:00 AM EST
•originally published 02/04/1991 AT 01:00 AM EST
"There were times after we were given our diagnosis when I thought it would be easier to take everyone into the garage and turn on the gas," says Elizabeth. "But as helpless as it felt at those moments, I knew that the next day might not feel hopeless at all, so I made the decision to choose to live."
It was a choice that seemed almost beyond her grasp following her daughter Ariel's death in August 1988. "When I learned I was HIV-positive," says Elizabeth, "as much as I was frightened and did not want to die, I felt I had lived every day fully and had no regrets. But after Ari died, I felt dead too. I spent a lot of my time lecturing myself, saying you've got to move forward, but I could no longer see any beauty in the world."
In a gradual and very private process of recovery, Elizabeth reclaimed her will to live. She has been buoyed by Ari's presence in dreams, and she has the loyal support of a regiment of women friends, along with her husband. "Paul is intrinsically more private than I," she says. "He's not comfortable speaking about private family issues. He's an artist, a writer and a director, and it's important for him to be doing his business, but when I need him to be there for me, he's there. He's a very caring, supportive member of this family."
Elizabeth speaks frankly about how tragedy can unhinge a marriage: "Many people think the loss of a child brings a couple closer, but in real life it's very hard to go through so much pain together. You're both scared, tense and angry. You're filled with feelings; one of them is love, but it's not unusual to feel estranged from everyone. That's a normal reaction to a crisis." Isolated from one another in their grief following Ari's death, the Glasers consulted a therapist to help regain a balance in their marriage. "Other men would have walked away," Elizabeth writes, "but not Paul."
More than nine years after contracting the virus, Elizabeth remains in stable health. She has regular aerosol pentamidine treatments, which help ward off the pneumonia that strikes so many people with the AIDS virus. She has also been taking the drug DDI since developing a toxic reaction to AZT in 1989. Son Jake, too, is well. "My son is a healthy, normal 6-year-old, living a full life with many friends," says Elizabeth. "He's a great athlete; he has a really cute way of meeting the world and he's just a joy."
Since going public with her family's story in August 1989, Elizabeth has grown more visible in her crusade on behalf of children with AIDS. "I realized that the greatest good would come from the federal government in terms of money and leadership," she says, "but that it was going to take too much time, which families with AIDS don't have. So I thought there would be a role for a small foundation that would fill the gap until the government took over its responsibility."
The Pediatric AIDS Foundation, which Elizabeth started with two close friends, Susan DeLaurentis and Susie Zeegen, may be small, but its ambitions are mighty: to raise money quickly, channel it directly into research and save lives. The foundation was formally launched in 1988 with a $500,000 donation from Paul's aunt, Vera List. Disney chief Michael Eisner got actively involved and now sits on the foundation's board along with Steven Spielberg and Kitty Dukakis, among others. Producer-philanthropist Ted Fields and his wife, Susie, have made generous contributions and opened their Santa Barbara ranch to doctors from the U.S. and abroad for a series of creative think-tank sessions to determine where funding is most urgently needed.
In the past 16 months, the foundation has raised more than $4 million and funded 38 research grants and nine scholar awards. More than 80 percent of the money goes to basic pediatric AIDS research, with much of the focus on studies of the central nervous system (which AIDS affects differently in children) and on finding ways to prevent infected mothers from passing the virus on to their babies in the womb.
Last summer doctors identified an antibody that could potentially block transmission of the virus from mother to fetus, and the foundation is racing to raise more funds for that kind of crucial research. "We need $1.5 million by next month," says Elizabeth, "and Uncle Sam has more money than my friends. The government needs to do its share."
Glaser spends most workdays in a rent-free room in Santa Monica that is just big enough for eight desks and three computer terminals. The sweet faces of children claimed by the epidemic stare from posters tacked on the walls, next to bright kiddie drawings and a flurry of photos and Postits. Seven full-timers—all three cofounders work without salary—and a handful of volunteers feed computers, stamp envelopes and field nonstop phone calls. Singer James Taylor is on line 1 for Elizabeth, whose eyes fill with tears when she speaks to him. (Taylor made a special lullaby tape for Ari when she was ill and is participating in a celebrity lullaby album, For Our Children, due this spring.) The foundation supports a national emergency assistance plan for hospitals treating pediatric AIDS patients. It also has helped design a program to educate parents whose children are already learning about AIDS in school, and Elizabeth is hoping to find a corporate sponsor to underwrite the program so that it can be offered free.
The foundation has made great strides in its short life, but Elizabeth and her team urgently press forward. "Fifty percent of America is better educated, but if you're living next door to the other 50 percent, it means nothing," says Elizabeth, who never loses sight of her power as a champion for families who lack her influence. "Like most people with AIDS, I feel aligned with the have-nots," she writes. "When I meet people in power, it's usually because they think I'm one of them. I look the same, but my goals are not their goals. They want a kinder and gentler America for themselves. My family needs an America that is kinder and gentler to all."
Elizabeth is as ardent a mom as she is an advocate and arranges her office hours so that they are in sync with Jake's schedule. When he is not playing with friends after school, Jake and his mother sometimes ride bikes or bake brownies and usually read stories before bed. "There's no real way to describe my life," she says. "It's sort of existential. All I think about is today and tomorrow."
Although Elizabeth sees a therapist weekly, when she most yearns for comfort she calls to mind the lessons she learned from her daughter. "At times when I'm not feeling strong enough to meet all my challenges," she says, "I want to be someone of whom Ari would be proud, because I was so proud of her. She would settle for nothing less than my best effort because that's what she gave. So in my weaker moments, I think about her, and I say, 'Okay, Ari, you're right. I'm going to move on.' And who knows what tomorrow will bring? I've always been someone who fought for a happy ending. Even though I cannot erase the death of my child," she adds, "all I'm doing right now is giving my best shot at fighting for a happy ending."