By Suzanne Loebl
December First became “World AIDS Day” also called “A Day With(Out) Art,” in 1988. It was started by a New York art gallery owner, who wanted to honor members of the artistic community. AIDS was particularly prevalent in this population; the disease first targeted gay men in urban cultural centers, including New York, Los Angeles and San Francisco. In the beginning, museums closed their doors, or mounted AIDS-related art shows. The familiar red ribbons, standing for charity, unity, compassion, and determination, made their debut. From its inception, Worlds AIDS day has created an annual theme, 2011’s being “Getting to Zero” (new infections).
We are far from attaining this goal. In 1985, 12,000 Americans had AIDS, and 7,000 died that year. By 2009, 3.3 million were infected worldwide and 25 million had died. Today, in Brooklyn alone, 25,000 people are HIV+. With adequate treatment, many will survive, but AIDS drugs are very costly, and have many serious side effects.
It is likely that we could have avoided much of the heartbreak and immense economic burden. We have stopped other fatal illnesses like Ebola fever or Legionnaire’s disease. We know how to avoid the spread of food-borne illnesses, and have halted the tampering of OTC medication by deranged individuals.
However, because AIDS first affected homosexual men and intravenous drug users—both marginalized by the majority—our government did not care. Doctors too, figured that AIDS was simply a novel infection they could easily manage. Finally the gay community resisted interventions. The disease was disseminated widely.
Any epidemic has widespread consequences. In 2009, there were already 16.6 million AIDS orphans. Spouses, parents, siblings, and friends are bereft. My son David was infected in 1983. Knowing that one child carries a fatal disease is every mother’s worst fear. During my journey, I encountered a group of mothers who shared my heartbreak. Our story is much broader than AIDS. It touches upon facing prejudice, growing up gay, bringing up a gay child, dealing with the medical system, having fun while defeat stares you in the face, death, and recovery. Most of all it is about the love, which is the basis of all worthwhile relationships. Here are some excerpts.
On the eve of Memorial Day, 1987, as I was preparing to join my husband Ernest in Maine, my Manhattan telephone rang. It was David.
“I did not know whether to call you,” he said, “but I have bad news.” He had gone to see Steven Marks, his San Francisco physician, who found that the AIDS virus had started to destroy his immune system.
I had tried to brace myself for such a phone call for a long time, but it still took me by total surprise. I wondered whether I was hearing right. Panic engulfed me. My heart pounded, my legs felt like jelly, I sank onto the rickety chair next to the phone. I willed my voice to be calm and reassuring: “Hmm,” I said. “You have to do something. Perhaps you can get AZT, that new drug everybody is talking about.” We chatted a bit, then “kissed” good night.
Some catastrophes arrive with a bang. AIDS, a calamity that was to change my life and that of my family, had sneaked upon the world with barely a whisper. In 1981, newspapers reported that doctors had noted a sharp increase in the incidence of some unusual diseases. One was Kaposi’s sarcoma, an exceedingly rare type of skin cancer, characterized by wine-colored, unsightly lesions. Another was pneumocystis carinii pneumonia (PCP), rarely encountered in healthy people. The third was toxoplasmosis—a fatal infection usually found in birds and cats. Those affected died after horrible suffering. One common link between the patients was that most were gay men, and all had a severely depressed immune system. At the time there were only a few dozen cases.
David had arrived in California on August 12, 1983, a good omen since it was my father’s birthday. My son was 27 years old, good looking and gay. For him San Francisco was the place to be. Or so it seemed, because actually AIDS’ shadow was already dimming the California sunshine.
When David arrived in San Francisco he studied the “For Rent” ads in the local gay press. Among many choices he settled on a house share in Oakland, a short bus ride from Berkeley. His landlord, Gary—a gay high school teacher—welcomed not only David but Liza, feeling that she would be good company for Raffles, his aging Lab retriever.
Six months later, when I went to check on my student son, he and Gary met me at the airport. I was to stay at Gary’s house and was a bit apprehensive about my immersion into the gay world. Indeed, when the weekend rolled around the curlers and make-up littering the bathroom upset me. Did that proper-looking high school teacher turn into a weekend drag queen? Would there be wild parties? I was of course wrong. My fears were a remnant of “straight” prejudice. To my relief and shame, I found out that the cosmetics belonged to the girls who visited another one of the roommates.
David had a knack for making friends. Gary loved him, as did other inhabitants of the house, as did his classmates in business school in Berkeley. On that first visit I met Andrea Lepcio, Dave Nelson, Lindsey Schubel, Robert Driscoll and a couple of other people, all of whom became permanent fixtures in David’s life. My son and I walked around San Francisco’s Castro, watching rainbow-colored flags fluttering in the wind. As the mother of a gay man, I too breathed more freely here.
I reaped the rewards of having accepted David’s homosexuality. It seemed that standing by my gay child entitled me to respect. I appreciated the special sensitivity of many gays and began to understand in-jokes. As a Jew and World-War II refugee, I identified readily with the gay world’s ever-present self-doubt, pride and need to prove itself.
Yet all was not well. AIDS was slowly creeping into the consciousness of the gay community. Newspaper reports about the disease increased, and even the public health departments started to view it as a threat. For most of us, however, it was still like distant thunder. Would the storm come closer?
It had taken me so long to find people with whom to share my plight that I went to the Mothers’ group every Tuesday when I was in town.
The Mothers’ Group filled an obvious need. A single woman had shown up at the initial meeting in 1986. Six months later, I was the 43d mother to avail herself of its warmth and wisdom. During its eight-year long existence the group welcomed 350 women.
I hated the Mothers’ Group and I loved it. Through attending it I openly confronted the realities of this puzzling disease once a week. I identified with the misery and helplessness of the others. Their stories fueled my fear, and on Tuesday nights sleep eluded me, even more consistently than on other nights. Yet, the brave part of my personality was buoyed by what I witnessed. If the other women managed to live with and through AIDS, I could too.
CHAPTER 9: MOUNT ZION
“Rio,” David wrote in his diary on March 28, 1993, “is very relaxed, warm and humid. So far, aside from some begging, haven’t experienced how dangerous people were saying it is.”
David had started his vacation with his usual energy: “After getting into room, went to gay beach at Panama, walked, swam, ate (fish, risotto with chicken) napped, ate again, (steak and fries), then danced at Le Boy.”
I had savored the many years that David had been symptom-free, trying to prepare myself for the day that he might become ill. Yet in no way was I ready to confront overt disease. I still could not say: “My son has AIDS.”
The magic of soaring into the sky had never quite left me. I loved being in the air, safe from intrusions. During many trips out to California I had joyfully anticipated my visits with my son. Now I was panicky. How would David be when I got there? I knew that I could not collapse, and had to be cheerful, confident and competent.
David met me at the airport. He was tense, but sported a tan and looked as handsome as ever. Back at the apartment, Liza greeted me in her nonchalant way. David handed me the present he had brought for me from South America — a leather frame for my mother’s picture. Then Robert Driscoll picked him up for an evening out.
It was almost as if David had waited for my arrival to get really ill. He coughed more, vomited and breathed very poorly. At times he gasped for air, and the oxygen shortage caused anxiety attacks. He moaned and kept repeating, “Mommy, Mommy, help; Mommy, Mommy, help.” The incantation disturbed me greatly, since I was powerless in the face of this dreadful disease. I asked David to stop imploring me. He said that my name was sort of a mantra for him, which he used even when I was not there.
CHAPTER 10: GRIEF
“We are starting our descent to San Francisco,” the pilot announced. “We should be at the gate in 30 minutes.” My heart skipped a beat. I had flown to California so often during the last decade, certain of the love awaiting me. Now the purpose of my trips was gone.
The flight had been less painful than expected. I had sat next to an attractive reporter from the Oakland Tribune. He was attentive, and had regaled me with some of his journalistic exploits. Our conversation had the intimacy of strangers whose lives touched for a brief moment. Our small talk kept me from disintegrating.
I had not asked any of David’s friends to meet me at the airport. I dislike people witnessing my raw grief, and I hurt too much to smile. So I took the Supershuttle, my son’s chatter reverberating in my head:
“You are back home,” he used to say. “How does it feel? See Candlestick Park? The Giants threaten to move because the wind impacts on the ball.” Or: “I should have taken [highway] 280 this time of the day. Liza will be so happy to see you. I want to take you to brunch at that new place on Guerrero. The plants need haircuts. You have to iron some shirts….”
I unlocked the door of the apartment. Everything was as I had left it three weeks ago: The Hirschfeld lithographs lined the hall; the enormous philodendron, grown from a cutting smuggled into California from our first trip to Hawaii, was still green, the geraniums I had planted in the window box to cheer up the air shaft were flowering; the pictures and notices plastered on the refrigerator door were still there, and so was the freezer filled with the food I had cooked months ago. Yet everything was different: David was missing and Liza was back East with Stewart until we could take her.
The three weeks I had spent in New York had been awfully long, and very short. Most often “I was” still with David on 17th Street, or in the hospital. I didn’t want to let go. I was afraid to forget. I couldn’t believe that he was gone.
My unconscious knew. For years, each time the phone rang I expected it to be David. Now I knew that it was not he.
My one consolation was that for David AIDS had been relatively benign. I remembered when he told me, in the hospital, that he never wanted to be that sick again. He kept his word to himself. Perhaps we do have some control over when we die. But I also remembered David telling me how much he loved life and how hard it was leaving it.
Years have passed since David died. I remember little about the first. My hurt was so deep that it seemed physical and totally overwhelming. David’s absence was by far not as traumatic as knowing that I would never see him again. I slept poorly and, in the morning, soon after I got up a large, fuzzy beast wrapped itself around my heart.
Then, once in a while, I had a better day. As these lighter days occurred more often, I was able to work on the promise I had made to David “that I would be all right.”
Though time eased my grief, it did not dim David’s presence. I think of him first thing in the morning and last thing at night. I talk to him and I miss him terribly: his laughter, his love, his ability to enjoy life, his rage. He had been so much fun to be with that my life forever after will be grayer.
The other night David paid me a little visit. I dreamt that “I was waking up and calling out. Someone came in the door. I expected it to be Ernest, but the person who came had very blue eyes. I looked more closely: A straight nose, blond hair. It was David.
“I have been missing you,” I said.
“I know,” he said, “that’s why I came.”
Then he sat down near my bed and it was wonderful. Finally I got up to fetch something, and when I came back he was gone, but I felt at peace knowing that he was watching over me and would be back.
Perhaps, at long last, I am able to accept that David is no longer physically here on earth, but that he will be with me wherever I am.
The Mothers’ Group: Of Love, Loss and AIDS, by Suzanne Loebl
(iUNIVERSE, ISBN: 0-59-41575-X $ 12.95)