Impermanence

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I am floating in a sea of gratitude and grief.

—Frank Lamendola

Last May I spent 3 days in Akron at the Association of Nurses in AIDS Care (ANAC) office going through files, uncovering memories, and making discoveries. It was rainy. It was gray. It was cool, feeling more like fall than the springtime reflected on the calendar. This seemed appropriate for my task. I was trying to orient myself to the ANAC archives as I started working on the ANAC History Project. I found letters and minutes and budgets and pictures and legal documents and things I had not even imagined. It was paper, but in reality it was people. I was hunting not only for what happened but also for who made it happen

When Adele Webb, Nurse Executive Director of ANAC, showed me the files, she pointed out a couple of videotapes and said, “You have to look at those.” So the last thing I did before I left on that Saturday night was sit alone in the quiet basement of the ANAC offices and finally meet two very important people: Frank Lamendola and Joanne Ruiz. I did not know them, but I knew of them. I first heard their names at my first ANAC conference in 1992, and I have heard their names every year since then. For me, these two are surrounded by a kind of mystique and an almost reverent respect. As a demonstration of that respect, the first two ANAC awards were named for them: the Frank Lamendola Achievement Award for Nursing Leadership in HIV Care and the Joanne Ruiz Achievement Award for Excellence in Clinical Practice. We honor Frank and Joanne every year when we present these awards to deserving ANAC members, nurses who have followed them in the traditions of excellence, caring, leadership, advocacy, skill, and compassion.

And so I spent a couple of hours getting acquainted with Frank Lamendola and Joanne Ruiz through their videotaped words and actions. For those of you who don't know of them, they were nurses infected with HIV. On the surface they did not seem to have a lot in common. Joanne was a single mom from California; Frank was New York native who resettled in Minnesota and helped found the Twin Cities Gay Men's Chorus. He believed he became infected in 1982 as a result of sexual activity. Joanne knew she became infected in 1987—the first U.S. nurse infected as a result of an occupational exposure. Her disease progressed rapidly, and she died 4 years after that exposure. Frank's disease progressed more slowly; he had 16 years to reflect on his infection. His family was supportive and caring. Joanne's mother was ashamed of the fact that Joanne had HIV.

Joanne Ruiz (1949-1991) was, as I once heard an HIV-infected physician say, “your worst nightmare”—especially back in the late 1980s before postexposure prophylaxis. She was a symbol of what could happen in a clinical setting and of the risk of working with HIV-infected people. She exemplified how nurses deal with the risk of occupational exposure by giving meaning to their care and by seeing people living with HIV infection as valued individuals deserving of excellent care (Reutter & Northcott, 1993). Joanne's exposure came after a long night working an extra shift because no one else would care for a patient with HIV. She never blamed the patient or her colleagues. She was dedicated, she was happy to care for the patient when others wouldn't, and she saw her care as a rewarding part of her practice. In Joanne's video she talked about losing her stamina and her ability to continue working, and she regretted that HIV had taken away her nursing career, “The one thing in life that I love so much.”

Frank Lamendola (1950-1998) was a spiritual man, or at least had become one as he struggled to cope with his disease. His video was of a talk at a conference on terminal illness and palliative care. In sharing his experiences, he used the imagery of crows and talked about death and care and compassion. He talked about making decisions and dealing with his fatigue and failing health, problems that had led to his decision to stop his clinical practice in order to to focus on his dissertation. I cried when he said, “What I love is killing me—I can't do it anymore.”

Joanne and Frank gave back to their communities by teaching and sharing important things: their lives and their ways of living with HIV. Neither resorted to blame. Both suffered. Both rose above. I like to think that this is what nurses do. Watching the videos, I discovered how very important these two were as nursing exemplars in the HIV epidemic; as people who paved the way for others; as nurses who lived the nightmare of the early days, who saw their patients fail and die; as people who clearly understood the illness and how it would progress in their own lives but who found meaning and grace in those lives; as people who were articulate and selfless, who shared their lives with others; as people who cried but still found humor and joy in the moment; and—critically—as nurses who loved being nurses.

As with most important learning experiences, viewing those videos did not so much give me new information as it reminded me of lessons learned. Life is fleeting; it is, as Frank pointed out, impermanent. Joanne and Frank did not live out their full expectation of years, which is what made their message so clear to me. Nursing is hard. Caring for people puts you at risk for emotional and physical pain, but those risks only emphasize the moments of joy in a connection, pride in knowing you made a difference, and solace in service. The lives of Joanne Ruiz and Frank Lamendola are vivid reminders to honor our careers and to appreciate every day that we can provide service.

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Reference 

1. Reutter LI, Northcott HC. Making risk meaningful: Developing caring relationships with AIDS patients. Journal of Advanced Nursing. 1993;18:1377–1385
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