There is a power in dying that deeply affects most of us who care for patients with end-stage illness. To see them and hear them and hold them is to know: There’s no time to waste. There are no second tries. There is only the best shot we can take, however long the odds. When it doesn’t work, there’s frustration and anger, sometimes guilt or self-blame, almost always a searing grief—and grief morphs into the energy that drives us back into the search.
Before we opened the doors of The 1917 Clinic to a flood of HIV-infected people, I had experienced health care and AIDS mostly as two separate interests or communities, two different worlds. Health care was about science and specialization, clinical precision and discovery in spotless labs and certified wards. AIDS was about the streets, gritty and tough; about patients who presented in our waiting rooms so late in their illness that most of what we had to offer was sympathy and a bit of palliative support. Our outreach staff came back with reports from apartments where sick friends cared for even sicker friends, where they’d noticed a mortuary phone number scribbled on a stick-it note.
For me, AIDS was also my introduction to vast numbers of gay men, many of whom had become dead to their families when they explained (“came out about”) their sexual orientation. Now they were dying again.
I was a straight, married, Jewish doctor in a mostly-Christian, socially-conservative state, in a country whose president knowingly went years refusing to publicly speak the name of the disease that was killing my patients. Even through the rosy glow of my optimism, and with funding still arriving from our research grants, I was seeing more and more what didn’t work in American health care. I was struggling to ensure care for my patients, many of them social and religious outcasts who viewed the medical establishment with skepticism because the gay community historically—and many of my new patients personally—had encountered layers of refusal built on stigma and shame when seeking medical care.
As the virus spread, the government’s faltering willingness to recognize the epidemic bred new suspicions in the gay community. Rumors and ignorance took the place of science and medicine. Suspicions easily gave rise to fear, and fear bred anger—anger that their lives were being cut short (most were in their 20s and 30s), anger that their doctors seemed powerless, anger that the nation didn’t seem to care. They heard the whispers, “They’re getting what they deserve,” and the sermons about God’s justice being delivered through The Plague.
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