A decade ago, before the nation awakened to the daily nightmare that is AIDS, Elizabeth Glaser was infected with the virus through a tainted blood transfusion. She did not know that she had passed the virus on to her two children until her daughter, Ariel, developed the disease at age 4. For more than three years, Elizabeth, 43, and her husband, director Paul Michael Glaser, 47, the former star of the TV series Starsky and Hutch, kept their painful ordeal private.
Then in 1989, just after the first anniversary of Ariel’s death, the Glasers went public with their story upon learning that a tabloid was about to expose their tragedy in an unauthorized feature. Since then, Elizabeth and writer Laura Palmer have collaborated on In the Absence of Angels, an inspiring account of the Glaser family’s struggles and triumphs, which will be published by G.P. Putnam’s Sons in February. ‘After we found out that my family was HIV-positive, “says Elizabeth, “it was clear that I would have to grow as a person more than I had ever imagined in order to find a way to cope. I wanted to let America see how painful it is to be a family battling AIDS and how hard it is to deal with the isolation and discrimination that comes through ignorance.”
The book is more than an anguished account of a mother’s loss; it is a testament to one woman’s brave refusal to surrender. “If reading my story can help open hearts to people who are battling this disease,” says Elizabeth, “then maybe other families will have an easier time.” Here is a selection from In the Absence of Angels.
There were no words, no sounds, everything was obliterated by a single focus, getting to the hospital. It was as though I were motionless and the scenery was being pulled past me.
When I arrived at Cedars-Sinai Medical Center, my husband, Paul, rushed over, and I could see the fear in his face. I was six months pregnant and had started bleeding. My baby wasn’t due for 11 more weeks.
I was diagnosed as having placenta previa, which meant the placenta was growing across my cervix. All we could do was pray that I would stop bleeding, because my child was probably too small to live outside my body. I lay there, day after day, with Paul by my side, waiting.
On the sixth day, I was sent home and told to stay in bed for the rest of my pregnancy. I was so afraid that I did less than whatever the doctor said I could. Each day was a victory, the next, a challenge.
Finally, on Aug. 4, 1981, Ariel Glaser was delivered by cesarean section. She was three and a half weeks early and weighed five pounds, two ounces, but I didn’t care. When I looked into her eyes for the first time. I was amazed that this miracle was mine. Our fears were gone.
I was trying to tell the doctors how glad I was that it was over, when I heard the anesthesiologist saying that something was wrong. I couldn’t breathe. I hemorrhaged. I was gasping for air. My doctor pushed on my stomach and I could feel the warm blood gushing out. I was too horrified to even scream. What was happening to me?
The transfusions began. I watched the dark red blood drip out of the squat plastic bag, flow through an IV tube and into a vein in my arm. I was transfused with seven pints. After the doctors packed me with cotton I finally stopped bleeding.
It wasn’t until I saw my baby daughter again that the weariness and terror began to drift away, to be replaced with an instinctive love. She was beautiful, and we had both survived. It was over. I finally fell asleep, thinking about the wonderful life the three of us had to look forward to.
Three weeks later I saw an article about a new virus called AIDS. I called my obstetrician immediately. “I just read an article in the paper about AIDS, a virus that may be transmitted by blood transfusions. I just got seven pints!”
“Oh, Elizabeth,” he said, “you’ve been through a difficult ordeal, but it’s behind you. Relax and enjoy your baby. Your nightmare is over. AIDS isn’t ever going to have anything to do with you.”
I had pork chops, not passion, on my mind when I met Paul 15 years ago. I was coming home from a session with my therapist and determined to defrost two chops and have supper by myself.
I had, in fact, just spent 50 minutes explaining why I didn’t need a man. Then, while waiting for the light to change at the intersection of Santa Monica and Beverly Boulevards, I looked at the car next to me. “Oh, my God, that is the cutest guy I have ever seen,” I thought. I smiled. He smiled. The light changed.
I turned right. He turned right. I glanced into the rearview mirror and he signaled me over with his arm. I was anxious and jittery as I pulled over. He stepped out of his car and walked toward me. I rolled down my window and he said, “Okay, let me see your driver’s license.” I looked at him and laughed. He was droll and disarming. “What are you doing for dinner?” he asked. Thinking of therapy, I told him I was going home and making pork chops. “Wouldn’t you rather go out for Chinese food?” “Yes,” I said without missing a beat. One therapy session thrown out the window.
We went to Al Fong’s in Beverly Hills. It was dark and the food was dreadful. Midway through the moo shu pork I asked Paul what he did. He said, “I’m an actor.” I was so disappointed. I had lived in Los Angeles long enough to know that being an actor meant absolutely nothing. “Are you working?” I asked politely. “Actually, I am. I’m in a show that’s just been picked up by a network. It’ll be on ABC in the fall.” “What’s it called?” “Starsky and Hutch. It’s a cop show about two detectives. I play Starsky.”
I knew that night that even though he was an actor, this was the man for me. I was 27 and in love. When I looked at Paul I saw happily-ever-after. In September I moved into the one-room bungalow in the Hollywood Hills he shared with a dog named Max.
Paul didn’t even have a television. We watched the debut of Starsky and Hutch with David Soul, the actor who played Hutch, at the home of David’s agent. Everyone, including the stars, felt the show would be cancelled in eight weeks. By Thanksgiving, it was the hottest show on TV, and Paul and David were as famous as rock stars.
Paul and I were both stunned by his instant celebrity status. For years, he had worked steadily, doing everything from Shakespeare to soaps. Starsky was not how he imagined becoming famous. There was a lot of adjusting to do. The simple joy of taking a walk on the beach in our jeans and sweatshirts came to a halt. Until you went out in public with Paul, you had no sense of how overwhelming, demanding, and ridiculous being a celebrity was.
During the years that Starsky was on the air, we never got involved in the social side of Hollywood. We saved our money, knowing that actors usually have lean times, and wanted to be prepared for that. The price I paid for Paul’s celebrity was invisibility. Hollywood people would nod and smile when I would say I was a teacher or, later, an exhibits director at the Children’s Museum. I had to find ways to accept that; one solution was to make a life of my own that was independent and strong.
I definitely knew I wanted to be married and have children. I had had a wonderful childhood and was looking forward to starting a family of my own. But Paul’s childhood had been more complicated, and marriage and family were scary to him. Paul and I talked it through, and he finally agreed that we’d get married when we were ready to have children.
Three months after our wedding in August 1980,1 was pregnant. All the goodness in the world seemed to be ours. In nine months I would have what I had always wanted most, a child of my own with a man that I loved.
When Ari was about a year and a half old, we began looking for a larger house. Paul and I wanted more children, and I was trying to get pregnant again. From the moment I walked into the sprawling Mediterranean house in Santa Monica. I knew this was the home for my family. Our children would grow up and go to college, and then Glaser children would come home with Glaser grandchildren.
Everything seemed to be going well. I had gotten pregnant and had miscarried, but was pregnant once more. And on Oct. 25, 1984, I delivered a beautiful son we named Jake.
In the spring of 1985 Paul was offered the job of directing his first feature film. Band of the Hand. The film was being shot in Miami, so we packed up the family and rented a house on the beach for the three-month shoot.
From Miami I took the children to visit my parents, who were living in Puerto Rico. We had just returned from that trip when Ari, who was then 4, started to have stomach aches and cramps. She was in a great deal of pain. We consulted a pediatrician who said that she had probably picked up a bug in Puerto Rico. When Ari didn’t get better, I went to another doctor who suggested a stomach specialist. He had Ari hospitalized for more tests. The doctors said they had no idea what was wrong with Ariel, but for the next three days they watched her as if she might die. Once again I saw her life as precarious. I could feel all my dreams and plans start to crumble. My many fears began to return. Without even knowing what was wrong, I was fighting for Ari’s life all over again.
By the time we left Florida in November Ariel was stronger, but not well. Doctors there said that she suffered from a blood disorder that usually leads to kidney failure. There was more color in her face and lips, but she still had bouts of diarrhea and would wake up in pain. Over the next few months we were doing test after test, trying to diagnose the underlying cause of Ari’s illness. Paul and I had told Ari there was something funny with her blood and that was the reason she was so frequently tired. We told her that the doctors were going to find a way to make her better.
As time went by and things still didn’t improve, Ariel was tested for all sorts of unusual diseases including lupus and leukemia. There was also talk of doing a liver and kidney biopsy, but that was postponed. When each test came back negative, I felt we had won another diagnostic round. But Ari’s doctor, Richard Fine, wasn’t as cheerful. He knew what we didn’t—that Ari’s diarrhea and low helper T-cells count an important part of the immune system that fights infection I were symptoms of AIDS.
I don’t think I was any more anxious about an AIDS test than I was about anything else. Just as her doctors had ruled out lupus and leukemia, they’d rule out AIDS. We took her in to be tested.
When the phone rang the next day, Paul answered it and after he hung up he said. “They’ve got to run it again. It’s shown some kind of positivity. It’s probably a mistake and we’ll know in two days.” The two days slowly passed. Richard Fine called that morning in late May. “The test has come back positive. You all have to come in tomorrow to be tested.”
Ari had been diagnosed. Ari’s illness now had a name. Ariel had AIDS. I remember walking into the bathroom and screaming as loud as I could. Ari and Jake must have been out of the house because I would never have fallen apart in front of them. Paul walked into the bathroom, but we couldn’t touch. We couldn’t even look at each other. He turned and walked out. I was still crying. He walked back in. He said, “You have to pull yourself together.” I thought, “Why? My life is over. The most important thing in my life—my daughter—is going to die.”
I became more and more hysterical. Finally, Paul sat down by me on the edge of the tub and just said, “We don’t know. You have to get control for Ari and Jake, Elizabeth. You have to—now do it.”
From that moment on I had no choice but to become intentionally schizophrenic. What I felt was one thing, and what I presented to my children and to the rest of the outside world was another.
The next morning we were all tested. Richard Fine called back later. “We have to run the tests on Elizabeth and Jake again,” he said, and by then we knew what that meant. We had tested positive.
Paul and I went back to UCLA and sat numbly in Dr. Fine’s office with him and Dr. Richard Stiehm, the pediatric immunologist who would become Ari’s doctor. They explained that there had been a lot of infected blood at Cedars-Sinai Medical Center in the early years of the epidemic because it is located on the edge of West Hollywood, which has a large gay population.
Dr. Stiehm said he thought I had been infected through my blood transfusion and had passed the virus on to Ari during breast feeding and to Jake in utero.
Paul and I sat there. In our worst nightmares, we could never have imagined the devastation of that office visit. Our entire world had been crushed. Ari, Jake and I might all die. It was too much to comprehend. Still, today, it is too much to comprehend.
They said that Ari should start on gamma globulin treatments right away to shore up her immune system. She could get the infusions at the UCLA clinic once ever three weeks, by sitting for four hours with an IV in her arm. Dr. Stiehm strongly recommended that we shouldn’t tell anyone about our diagnosis because the experiences of other families with AIDS had not been positive. “The world is not ready for your family,” was how he put it.
Nevertheless, he said we needed to either tell her nursery school or take her out of it. The Centers for Disease Control guidelines, at that time, said that a child with AIDS should not be in nursery school without first getting permission from the school. It was surreal. Along with this hideous medical diagnosis came instructions on how we needed to handle the rest of the world.
Dr. Stiehm told me that I could test positive and carry the AIDS virus without being symptomatic or showing any signs of the disease. In other words, there was a big difference between being HIV-positive and having full-blown AIDS. Although Jake had tested positive, his other tests were all normal.
I told Dr. Stiehm that I could not live without telling my friends. They had been following Ari”s illness since Miami, and their support and concern had been crucially important. Paul and I decided we had two choices. We could tell some friends or we could pick up, sell our house and begin our life all over again someplace else. The life we had known was over. I had to stay strong so I could save my children. Our first steps were perhaps the hardest.
Paul and I decided to confide in only a handful of friends. I told my women friends in person, one by one, and made each of them promise not to tell anyone except their husbands. For some, whose children were playmates of Ari and Jake, finding out that we had AIDS was like finding out that for years their children had been in imminent danger. Most of our friends wanted to stand beside us. but they also wanted assurances that there was no risk to their children. In May of 1986, answers were in short supply and there were no guarantees.
At first, no one would allow their children to come and play at our house. Some friends refused to let my kids come to their homes at all. Some said their children could continue to play with mine, but only at the park. Some dropped out of our lives.
The day after I told my yoga teacher about our diagnosis she called to tell me that she never wanted to see me again. We asked a therapist to see if a child psychiatrist would work with Ari when and if we felt it was appropriate. I was later told that psychiatrists would not see my child, because they were afraid if word leaked they would lose too many other patients.
People were responding so fearfully that I started to feel dangerous myself. The doctors said there was no reason for fear, but that meant nothing because our neighbors and our friends were not doctors. Every time I went into the supermarket. I envisioned everyone slowly and silently moving away as if they had just seen a rattlesnake. It would be nine months before the Surgeon General would appear on television to say flat out that you can’t get AIDS from saliva or kissing. And with that information, our lives slowly regained some normalcy.
When we told people, we forced them to enlist in a conspiracy of silence. The quality of our lives now hinged on the ability of our friends to keep quiet. Were word to get out, we knew we would be treated like plague victims for no reason. All of us were very afraid and confused.
What could have stopped the fear and hysteria was strong leadership from the Reagan administration. But in those early years of the epidemic, that leadership was absent. AIDS may one day cost me my life, but community reaction right away cost me the right to live the rest of my life the way I choose. That was my first fight.
It was a time that would almost be unimaginable if we hadn’t lived it. It is what all families battling AIDS had to face then. You are told that you and your children may die. You are told that there are no answers now. And then as you are struggling not to completely fall apart, you realize that very few people are going to reach out to help or comfort you. We felt so alone. We wished for an angel who would help us get through it all. But at that time it seemed we had no angels watching over us.
One of the telephone calls I dreaded most was to Crossroads Elementary School, where Ari had been accepted. Both Paul and I desperately wanted her to start kindergarten that fall. It was one of the few direct links we had to the future, and it meant so much to Ari. Paul Cummins, the school’s headmaster, had no idea why I’d walked into his office. He seemed both confident and relaxed. I took a deep breath before I began.
“We were planning on having our daughter, Ariel, start kindergarten here in September.” I said. “But 1 just found out that she, my son and I are all infected with the AIDS virus.” I started to cry. I was sure he would send me away and tell me to find another school. Paul Cummins walked over and put his arms around me. “You are part of our family,” he said. “We want you here.” He held me as I cried. I left his office feeling both relief and joy. As long as I could see that not every door was going to be closed to us, I could hope.
Ari had spent just one week at Crossroads when Cummins met with the Glasers to explain that the school’s board was about to draft an AIDS policy. He was concerned that Ari’s presence in the school might jeopardize its passage. So Ari was uprooted and transferred to a nearby public school that already had an AIDS policy, where she remained until the following year, after the Crossroads board had agreed to admit children with AIDS. Says Elizabeth: “It was another hard lesson in how little could be taken for granted. ”
While I was fighting my battles, Paul was coming to grips with his own private war—a battlefield on which he might lose all those he loved. It was a difficult struggle for him then and it still is now. He worked as much as he could, as that gave him the strength to keep going. Sometimes it is hard for me to believe that my life is real, but trying to imagine being Paul is even more difficult.
Ariel was doing well. Each morning I would sit with her and pick out the hair ribbons she would want to wear. We would stand in front of the bathroom mirror and I would brush her hair 100 times to make it shine. As her hair glistened, silent tears would fill my eyes and my heart would break, knowing that I might lose her. It became impossible for me to ever feel really happy without feeling achingly sad.
That autumn, I kept wishing for things that never seemed to happen. I wished Ari would be invited to someone’s house for a sleepover. I wished one of Jake’s friends would invite him for a play date. It would be lovely if Paul and I were invited to a dinner party.
At that point in our lives, coping with fear was far worse than coping with AIDS. The fear of rejection or exposure was with us at all times. Most people have nightmares when they sleep, but when you are a family facing AIDS, the nightmare begins fresh each day. Sleep is the only time when I feel just like everyone else. Often I wake up in the morning having forgotten for an instant about AIDS, but that lasts for only a blink of an eye.
In the fall of 1986, the doctors still had no answers. Naively, I thought we were ahead of the game. Since none of us was sick or deteriorating, I felt that maybe if we could just stay strong, doctors would find a cure. Ari was already five years old, while most children with AIDS died by the time they were two.
I felt I had every right to be angry. But what good was it going to do? Would it make Ari well? Would it make Jake live longer? I couldn’t stop myself from being angry, but I could keep that anger from being trapped inside my body. I would think of a room with two doors. If the anger came in one door, I tried to be sure there was always another door so the anger could get out.
I had to learn to forgive. I had to forgive the blood donor. I had to forgive the doctors, the hospitals, the schools, and I had to forgive fate. I had to forgive God, if there is one, and I had to forgive my friends, who had to forgive me. Right away Paul saw that we would have to forgive everyone, that we would have to let the anger pass right through us. He helped me to learn this. It was bitterly hard. Anger is a poison that will seep into your system and want to stay.
But I still get angry. Sometimes when I am alone in my car I scream, “if you are there, God, I hate you! I hate you for making this my life. I hate you for letting Ari get sick. And I hate you because I don’t really think you are there.” My throat hurts when I’m done, but I usually feel calmer.
I would feel a painful jealousy whenever I saw people who seemed to have normal lives and healthy children. I would feel an excruciating envy toward strangers and my friends who could have what I never could. And then I would feel very, very sorry for myself.
I learned to let go of all of these emotions that depleted me. I am never going to be able to have what other people have. At some point you begin to accept that this is your life. I’ve learned that you often have no say in what happens to you, but you can choose how you bear the consequences.
Paul had finished directing Running Man in the spring [of 1987], and we had decided we would make our annual summer trip to Maine. We were swimming, boating, hiking or picking wild blueberries on Pleasant Mountain. At night we would make a fire and toast marshmallows. Simple and intense delight. But Ari started to seem weak, and I sensed for the first time that she was beginning to fail. Her appetite diminished and she complained of stomach pain. In past summers she had always been eager to go in the canoe and be by the water, but now that eagerness was gone. As a mother, I knew instinctively that I was losing her.
I called Dick Stichm in Los Angeles. “We’ve got to get AZT now,” I said. “She’s starting to fail.” In 1987, AZT was the only treatment that seemed to be effective against AIDS.
“It’s not ready for children.” he replied.
“What do you mean? It’s ready for me!” Although I hadn’t needed to start taking it yet. I knew it was available.
“AZT hasn’t been approved for pediatric use. It’s just not ready.”
“We’ve got to find a way to get it and use it.”
“Elizabeth,” he said, “we don’t even know the dose to give her. We can’t just experiment. It could kill her.”
“When will it be ready?”
“In the fall.”
I took a deep breath and prayed that we could hold on until then.
By the time we got home, Ari was thinner and weaker, but Dr. Stiehm felt she would still be able to start school. She had her heart set on beginning first grade. It didn’t work. Although Ariel looked beautiful with her shiny hair and luminous blue eyes, she frequently had outbursts of ghastly pain. She was a valiant fighter but was only able to finish two weeks of first grade.
As the pain increased, Ari and I became more and more like one person. In her worst moments, my eyes would start to fill with tears and I would say, “Oh, Ari, I wish I could take all your pain into my body. I wish I could make it all go away.” She would look right into my eyes and very slowly answer, “But you can’t, Mom.” We both knew it was true.
We would cherish the good moments more than ever. Paul would take Ari to the end of the block to feed the pigeons, and at night he would lie beside her in bed and make up wonderful fanciful stories.
In the fall parents started getting curious about Ari’s long absence from school. Rumors were raging and several parents asked the school’s director if Ariel Glaser had AIDS. Each time we found out that someone was asking, our anxiety soared. Paul and I still felt the risks of going public clearly overshadowed any gains. As awful as it had been for us to shoulder the massive weight of the secret for the previous year and a half, we dreaded even more the risk that our children might experience any of the hysterical fear that still surrounded AIDS in many parts of the country.
Paul and I had stopped going out, except with the few who were pledged to secrecy. Our friends worked as hard to protect our privacy as we did. At night, Paul and I would climb into bed exhausted by the strain of just being us. If we talked about our fears, we felt overwhelmed. If we talked about our hopes, it felt like pie-in-the-sky dreaming. So usually, we didn’t talk at all.
Some nights I would just lie there and think how trapped Paul must feel. How hard it was to live with us and how impossible it would be to leave. If he walked away, everyone would think he was such a “bad” guy. But I knew he must have wanted to run away at times. Part of me would have wanted that. But he never said it, we never shared what we were thinking. It was too scary. On a good night we would fall asleep in each other’s arms.
Ari was getting weaker and weaker. We had been waiting for AZT all that year and each month it wasn’t ready. Paul and I were silently praying that something would change the course of our lives, working hard to keep optimistic.
Shortly before Thanksgiving 1987, Ari was hospitalized with acute pancreatitis. She was released after four weeks but had to continue being fed through an elaborate intravenous system, which Paul and Elizabeth mastered so that they could care for their daughter at home. Ari began taking AZT orally right before Christmas, but the drug had no positive effect.
Through January of 1988 Ari became more confined. By February she stopped walking completely. We didn’t know why. The doctors had no answers. I carried her everywhere. She was unable to speak, but we both remembered the words that had already been said. We would still go for long walks. I would put her in the stroller, cushioning her with pillows and wrapping a blanket over her legs. Despite the pain and the weariness that she always felt, she never failed to respond to the beauty around her.
In March 1988, nearly two years after our initial diagnosis, the guillotine fell. Ariel got pneumonia and we were back at UCLA again. We learned that her brain had severely atrophied. The doctors said it was irreversible. It was one of the central nervous system complications of AIDS that is quite common in children, though not in adults.
After four days, Dick Stiehm solemnly sat us down and told us that Ari had probably 48 hours to live. She was breathing weakly, but what none of us knew then was that she hadn’t given up.
It was not until the doctors told us that there was absolutely no hope that I confronted the possibility of Ari’s death for the first time. I sat with a friend and lit one cigarette after another. I was shaking and not yet able to talk. “No one cares if we all die from AIDS.” I said. “Something is very wrong. I have to get to the President.”
It was in that moment of honest desperation that I realized I could no longer sit quietly in Santa Monica. A mother’s job is to save her child; it’s a basic animal instinct. But I was failing. I had to do more.
Propelled by anger and frustration, Elizabeth considered ways to take a more active role in AIDS issues without compromising her family’s privacy. Ariel survived the pneumonia, yet her health seemed ever more fragile. The day the Glasers brought their daughter home from the hospital, Elizabeth discussed her intentions with Paul.
Paul was silent for a long time and then with great gentleness he said. “I’ll support you in whatever you have to do.” I gave my husband a big hug and felt a smile spreading across my face. I knew this was the moment when I was taking that hard first step. I didn’t know it at the time, but it was the step that has kept me in motion ever since.
As a member of a family struggling with AIDS. I learned that few wanted to help enough to change a system that had become strangled by red tape. The ones who tried were often ignored because AIDS was something many refused to deal with. Someone had to care enough to be willing to shake things up, but I didn’t know who it would be. I realized my country was failing me. The compassion as well as the moral and ethical foundations of our society were being tested, and from my point of view, America had let me down.
Determined to educate herself about AIDS as a national issue, Elizabeth met with physicians, politicians and friends to plan an assault on policymakers in Washington, D.C. Her first goal was to explain that AIDS affects children differently than adults and then to persuade legislators to make federal funds available, specifically for pediatric AIDS research. During her visit to the capital six weeks later, Elizabeth also met Dr. Phil Pizzo, chief of pediatrics at the National Cancer Institute in Bethesda, Md., who had launched the first federal study of AIDS in children. When he learned that Ari had been taking AZT orally with no favorable results, he recommended that she take the drug intravenously. Dr. Stiehm had already tried to get AZT in that form for several of his patients but had failed because it was still only available for trial testing. Elizabeth returned home and refused to give up until she was able to obtain the intravenous drug for her daughter in May 1988.
I sat in my den, relieved that we had succeeded in getting the drug and furious at the inhumanity of a system that cared more about rules than lives. Did I love my child any more than the mother in Harlem, Miami or Newark loved her child? Absolutely not. Did Ari deserve a chance any more than their children? No. Every child with AIDS deserves a chance. And what about the children who had no one to speak for them?
Then, three weeks to the day after we started intravenous AZT, I walked into Ariel’s room in the morning and she looked up and said, “Good morning, Mom. I love you.” I could hardly believe it. Ari was back! The sky had opened up. I had to find Paul. Maybe miracles did happen. Maybe one was going to happen in our house.
Ari continued to improve over the next six weeks. The intravenous AZT was unwinding her cocoon of paralysis, and her 6-year-old self was still underneath. The whole world had started spinning again. In March we were told to prepare for a funeral. By May we had a shot at second grade. If Ari could make it. we were all going to make it.
In June, friends arranged a meeting between Elizabeth and the Reagans at the White House, where she appealed to the President to lead the nation on this urgent issue. Although the Reagans welcomed her warmly, their private concern had no positive impact on public policy. The more Elizabeth learned about the government’s indifference to the issue of children with AIDS, the more determined she became to form a private foundation to raise funds for pediatric AIDS research.
It was one of those beautiful Los Angeles days when the sun, air, sky and sea all seem perfect. I asked Ari if she would like to go down to the Santa Monica pier, which has rides and an amusement arcade with cotton candy and stuffed animals for prizes.
Ari and I went on the Ferris wheel together, around and around, waving wildly, queens of the sky and sea. For a moment, I was experiencing the thrilling unadulterated joy of just being a mom. Maybe there was some part of Ariel that knew this was the last day that she was really going to get to be a little girl.
Two weeks later Ari was readmitted to UCLA hospital. Her white blood cell count had fallen too low, and we had to take her off the intravenous AZT. She was having fevers that we couldn’t break. But I persistently believed that this was just another crisis that we would somehow survive. I have never been able to accept endings that I don’t like. I fight to make life the way I want it to be, and because of that I never believed that Ari was going to die.
We had Ari’s seventh birthday party in the hospital, and Dick Stiehm gave her a UCLA T-shirt and told her it was what she would wear on the day she went home. But Ari had regressed greatly. In a few weeks, we had slid back down the mountain we had climbed since June. Her care was intricate and complex, but all I wanted was to take her home.
Three weeks later, on Friday, Aug. 12th, 1988, we were packing up her things. Ari was lying in her bed and I said to her, “We have to see if you can sit in your stroller, honey.” And Ari said, “No, Mom, I’m going to walk home.” She couldn’t move her legs. I looked at her and said, “Give me a break.” Ari said simply, “No, Mom, I’m going to walk home.” “All right, Ari,” I said. “Go for it.”
Paul and I continued getting her things together. It was not until the last 10 minutes of her life that I knew she was dying. And then very quickly she was gone. She was never supposed to die. It was too short a time to have had her. Paul wept and I cried, “Noooo!” It was a “no” that wanted to turn back time. It was a “no” to a world that had failed me. Our beautiful daughter had died. Ariel Glaser had been on the earth for seven years and eight days.
That Sunday, the Glasers held a memorial service for Ariel at home, and on Tuesday, Aug. 16, their daughter was buried next to Paul’s father at a cemetery in Boston.
We have left Ari’s room just as it was when she was alive. Paul and I decided we couldn’t imagine changing it. We each find our way into her room at different times and in different ways to tell her we love her. Her door is always open. It’s not maudlin; it’s just life. Ari’s room remains though Ari is gone and her spirit fills our hearts.
As In the Absence of Angels continues, it chronicles Elizabeth ‘s evolution from a desperate mother, crying out for action, to an impassioned advocate, in charge of her life and determined to help others.