The AIDS epidemic has been with us for 33 years and has killed about 36 million people. Like Ebola it is still “raging,” and it is a much bigger medical problem. There are about 2.1 million new infections every year. There is still no cure, though with proper care and very expensive drugs, AIDS patients have an almost normal life span.
Twenty-seven years ago I rang the doorbell of 67A 11th Street in Greenwich Village, New York City to join a group of mothers whose children—mostly gay sons—had been infected by the AIDS (HIV) virus. My life was about to change irrevocably. It had been a hard decision to go.
David, my son, believed that he had been infected in 1983, but we had not faced the facts. Anyhow, medicine had no answer. Finally in 1987 David had himself tested and learned he was positive. By then the virus was nibbling at his immune system. I had to let AIDS into my life and needed people with whom I could share my fears and grief. GMHC (Gay Men’s Health Crisis) referred me to the Mothers’ Group.
It was hard to admit to myself that David might harbor a fatal disease. Indeed, when I attended my first meeting of this self-help group and was asked “for whom I was here” my answer felt as if I personally was condemning my son to death. Yet joining the group was the best thing I did for myself during the ten years I was David’s care partner.
Whether it is sudden, as in the case of a car accident, or slow, as in the case of a fatal disease, losing a child is the hardest thing that can happen to a parent. Though it was excruciatingly painful to accompany my grown son on his journey, I am forever grateful that he let me. I was happy being there for him and glad that, as one mother put it, I had gotten over “all that gay stuff.”
Fran Herman, a social worker and the mother of a son battling AIDS, founded the group at the end of 1986 because she felt that “during a crisis women usually provide the emotional strength for the entire family and never get to express their own fears and needs.” There was a need for the group. Six months later when I showed up, I was the 43rd mother who needed help. During its eight-year-long existence, the group welcomed 350 members. All of us knew that we had to be calm and collected when with our children, but at our Tuesday night meetings we let our grief, exhaustion and frustration flow freely.
We were battling the world on many fronts: Gay liberation was in its infancy. The APA had only declassified homosexuality as a mental disorder a short ten years earlier, and it would take another twenty years for gay people to have equal rights. Moreover AIDS terrified America and though the disease is never transmitted by casual contact, many families refused to have anything to do with an HIV positive-person. Drug and insurance companies, landlords, and the clergy were callous. Standing by a gay child was still a novelty.
The government turned a deaf ear to this major medical crisis, thereby fostering its spread.
Never before, or since, have I been as close to a group of women. We had absolute trust in one another and helped each other take care of our ailing children. Going to various New York hospitals to visit “our” children was terrible because they made me anticipate my future. Nevertheless the group infused me with strength. If my friends could do it, so could I.
Now, thirty years later, the past is still with me. My heart is filled with David, whom I lost in 1993, but I am neither bitter, nor regretful. I feel sorry for all those who reject their children for reasons that are outside human control. Fatal diseases, like wars, have no silver lining, except perhaps that they teach us what not to do. In America we are in the process of welcoming and integrating gay people into our lives. We may overreact to the threat of Ebola—but at least we try to avoid another catastrophe.
The Mothers’ Group: Of Love, Loss, and AIDS by Suzanne Loebl (2006) records the memories of the women who attended the group and of the author. Though the illness it discusses is AIDS, it is helpful for all those who have lost a loved one.