By Bree LeMaire
The AIDS quilt panels spread out over a quarter mile in Washington, D.C., on the National Mall. People slowly, reverently, walk looking down, taking in endless panels. The reality of it all jolted me. I knew there were deaths, but I never dreamed they were of this magnitude. One panel had an appliquéd photo of a man floating on clouds surrounded by signatures. Another had a tree with a name on each branch and then further another extended section with kids having hemophilia, mostly boys, so very young. Another panel showed a bouquet of multicolored balloons and below them a name with the lifespan date. Next was a flag full of stars across a gay rainbow and a short poem with a name. Then came a Spanish saying mentioning discrimination with the victim’s picture and the word “non.” One after another of clouds, balloons, quotes, sayings, and special messages. With a full heart I realized they all spoke of a special individual loved enough for another to take their time to construct a quilt. I joined the slow parade, walking, in my own solitude, reading, digesting, taking it all in.
I was two years into my work as an AIDS research nurse at UCLA, and had gone home to visit my folks in Delaware. Only a short train ride to check out the quilt, this experience was a break from family intensity.
Strategically dressed in white and walking between the panels were grief volunteers. It was late afternoon. Some spoke quietly with the strolling visitors, while another put their arm around an older man and offered a tissue. At one point I watched a conga line of those white-clothed people holding hands and quietly dancing by. There in the middle of the line was Richard, a handsome man with light brown, curly hair and deep blue eyes, a friend. Here was a familiar, understanding person to connect with, one of the subjects in my study. Neither of us had talked of going back East, and there he was, standing with his arms open for me to walkinto.
“I can’t believe all this. How does a person take it all in, so many?” I mumbled.
Once we recounted our surprise at meeting one another so far from Los Angeles, Richard led me to a nearby bench. I cried while he supported me for at least an hour. Then a far-off bugle began playing taps. The white-clothed volunteers began to form a circle around each quilt, and slowly began a silent folding ceremony. Each piece was taken, stacked, and stored for the next day.
“The damp comes in at night and seeps in if we don’t put them in dry storage,” Richard explained.
As the guardians put the panels away, I hugged Richard and said goodbye. We promised to reconnect, and I headed back to Delaware, a million miles from all the sadness. A month later, I heard from Richard. He said he’d been dealing with mycobacterium avium complex and cytomegalovirus, both normal bacteria and viruses we carry every day, but immuno- compromised people cannot fight them off.
“I was responding to treatment,” he said, “but we all know there is no cure.” When he felt better, I saw him for a home visit. This included a lunch his home health aide prepared. Richard lived in a beautiful West Hollywood house, bright and sunny with lots of windows, flowers, and white curtains. There were newly planted pansies, begonias, and white daisies along the entry walk. We enjoyed the sunshine from his kitchen window. He said, “I used to own eighteen houses in Los Angeles. I invested in real estate, and now I’m losing them all as I can’t make the payments.” It was his way of telling me how successful he had been, a counterpunch to his illness.
When I next called Richard, his roommate said he’d moved, which didn’t make sense, as he had seemed settled in at home with his aide. Then I heard from his aide. Richard had died. Six months later, I read his obituary in the L.A. Times. He’d died in a local hospice. I realized his desire to be seen as a successful real estate investor, not a debilitated victim in an AIDS hospice. Once more I knew the emptiness of separation during Richard’s final days and felt sad, as I was never offered the opportunity to say “Goodbye.” Even so, I cherish the sunny Washington afternoon when he emerged from a conga line and welcomed me into his loving embrace.
Bree LeMaire, RN, M.S., worked in HIV research for ten years. At forty-eight, she was happy to find a research job at UCLA, even though HIV was something health care workers avoided. Her focus would be on research, never thinking the patients would become dear friends who became sick and died. Writing was her method for coping with so many deaths.