In 1981, I completed my fellowship training in blood diseases and cancer, and took a junior faculty position at the University of California, Los Angeles. During that first year at UCLA, a young man was hospitalized with a rare form of pneumonia caused by Pneumocystis carinii. He died despite the most intensive measures. Not long after his death, more men struggling to breathe were diagnosed with this infection; others sought care for an unusual colitis, cytomegalovirus inflaming their bowel, and still more for high fevers and wasting from an avian microbe akin to tuberculosis. Then several arrived with red and purple tumors that grew to distort the face, swell the limbs, and block the throat. Biopsy showed Kaposi’s sarcoma, a tumor sporadically seen in the elderly and in an endemic form in Africa.
All of the patients proved to share one laboratory abnormality: low numbers of T-lymphocytes, blood cells crucial to immune defense. But what also linked them was their sexual orientation, and this led some to name the new disorder “GRID,” for gay-related immune deficiency. Later, it would be known as AIDS.
From much of society, there was scant sympathy for these suffering men. Fundamentalist preachers thundered that the malady was deserved, a manifestation of God’s wrath visited upon sodomites. Many in government expressed no interest in a rare disorder striking what they viewed as a marginal group. And some health care workers shunned the patients, not just out of fear for their own health, but disdain for homosexuals.
As a new faculty member with expertise in oncology, I was asked to help care for the men with tumors. And since my laboratory research involved T-cells, I also joined the larger effort to identify the cause of the new malady.
At the beginning, no one knew its explanation. Was it an infectious agent, perhaps a mutated T-cell leukemia virus like the one I was studying? Was it due to a collapse of the immune system after exposure to antigens in semen and toxic party drugs like “poppers,” amyl and butyl nitrates? So, in pursuit of a cause, we not only took a medical history and performed routine laboratory tests, but conducted sophisticated studies on blood and other body fluids and delved into the intimate details of these men’s lives. I met teachers, firemen, lawyers, teamsters, and architects. At first, they were wary in answering, our questions opening up parts of their lives that they had learned to keep shielded. But over time, trust grew, and a largely hidden culture was thrust to the fore by illness.
Over several years, I heard the life stories of hundreds of gay men. And as I listened, I felt a growing kinship with them. Unexpectedly, it grew from being raised in a traditional Jewish family in the shadow of the Holocaust. My mother’s uncles, aunts, and cousins in the Carpathian Mountains …
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What It Means to Be Deaf April 4, 2013