Today is the twentieth anniversary of my brother's death. In a twist of irony, I spent last night watching the HBO movie version of Larry Kraemer's play, THE NORMAL HEART. I was destroyed by the end of it. The spotted men. Walking skeletons. The anguish. The indifference. The courage. The injustice. At least by the time Bob was diagnosed in 1994, there were medications, funding, support services, and scientific data. For those first stricken with the "plague," there was nothing but the loyalty of friends and the compassionate, increasingly angry voices of activists who worked tirelessly to bring attention to the epidemic. Twenty years later, my story fits into the larger epic of the AIDS story, like a piece of the quilt. So much has changed in those twenty years. Now people live with HIV thanks to the "cocktails" and medical advancements. Magic was diagnosed before Bob. He has lived a full life. There is a reason that my brother is dead and Magic is not. The social stigma that accompanied the diagnoses, captured in The NORMAL HEART had to have played a part in Bob's fear and unwillingness to seek treatment earlier. I believe now, twenty years later, that my brother thought he had too much to lose. It was unimaginable for a man who, while not closeted, lived a very private life. We never spoke of "it." It wasn't until I walked him in to the hospital to get the test that we ever even acknowledged anything about "it." In fact, we never did say anything to each other about "it." The only words I said was "Well at least we'll know." Whether shame or embarrassment were part of his silence, I'll never know. I only know that for me it was the most intimate conversation I'd ever had with my brother. The details of my story are written in ARIA a sister's journey with AIDS, and can be found in this blog. I have been writing this story now for twenty years. Last night, the realization I had, thanks to THE NORMAL HEART, was that my brother was scared.
But unlike so many of those poor guys in the early 80's who faced healthcare workers in space suits, and whose bodies were tossed like rubbish into trash bags, my brother died surrounded by his loving family who held his hands, gloveless, and kissed his face and mopped the perspiration from his forehead and sang to him as he labored to leave us. There were few words spoken between us about "it." I believe that made it easier for him. But the unspoken moments pour out of me still. I miss my brother and his normal heart.
Tuesday, June 10, 2014
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