Like a lot of people my age or older, I have a former life, an incarnation of myself that might seem unrecognizable to my daughter. In my early twenties, I had another life partner, named Tim. He had contracted HIV when he was twelve, through medication used to treat his hemophilia. The medicine was made from human blood, and at that time, the blood supply was not tested or cleaned. After Tim and I met in college in Ohio, we moved to the Ozark mountains of northwest Arkansas, where I attended graduate school. Tim’s official job there was as a technical writer.
Tim’s secret job was to work with his brother to write and produce a grassroots activist hemophilia / HIV newsletter. In the tiny world of hemophilia, he and his brother were famous, but in our daily life, he kept his HIV status a secret. (Pre-Internet, you could do things like this.) Fear and prejudice surrounded AIDS in the late eighties and early nineties. No drugs worked for long, and people moved quickly from diagnosis to death. Many people, including some government officials and religious leaders, argued that we should quarantine people with HIV in camps, or tattoo them to keep the “good people” safe. Doctors and scientists were wrong, they insisted: maybe you could get AIDS from a drinking fountain, or a handshake. Who really knew? They also believed that only immoral people got AIDS, so they deserved to die.
As Tim and I moved south to a rural state that ranked 51st in the nation in AIDS awareness, we worried: if people around us knew, could we could rent an apartment? See a dentist? Keep our jobs? We knew a powerful woman in the hemophilia-AIDS community, Louise Ray, and she and her husband had three hemophiliac sons. We remembered vividly how, when the Ray family asked their Florida community for help for their children, all of whom had been infected with HIV, their family was turned away from their school, their barber, and even their church. Someone burned the Rays’ house to the ground.
Tim finally tired of the secrecy. Arkansas was a place he could make a difference, he argued. Also, he had been approached by a new organization called RAIN, the Regional AIDS Interfaith Network, and they wanted him to speak in the public schools. He was exactly what they were looking for – Tim looked as if he were still in college, and didn’t fit people’s stereotype of what a person with AIDS should look like. Would I let him go public?
When I gave in, I did not realize he’d begin his newly-visible life as the top story on the six o’clock news (the first sentence: “Tim Haas has AIDS). That night, he said, “I’ve never known adult life without AIDS, and in a way, I really appreciate it, because it has given real value to my life. I know what I want to do, and I know what my values are, and a lot of people can’t say that, even when they’re forty.”
Even when they’re forty! It sounded so far away. I’m now several years past that, and Tim has been dead for almost 25 years. In fact, he died a little less than a year after that tv interview, and I was not just grief-filled, I was overwhelmed. Tim always said that he planned to live a full life in the time he had, and I’d be the really lucky one, because I was going to get to live two lives, one with him, and then a whole extra one after that, for free. I had a second life and — I realized with alarm — it wasn’t simply more time. It was life coupled with a deep knowledge of what it meant to live, die, and make a difference. It was a gift and a responsibility. What would I do with it?
Tim was hardly Jesus, but the “whole extra life” he promised me reminds me of the life that Christians are offered as the final part of the Jesus story. Three days after Jesus is crucified, the curtain at the temple is torn in two, and Jesus rises from the dead. He transcends death. One day, we believe, we all will transcend death as well. But the importance of the Resurrection doesn’t end on Easter. Easter is only one day. Easter only celebrates the beginning of knowing, the first day of the rest of our lives as Christians.
I am the Resurrection and the Life, Christ said. He separated the two. I grew up understanding “life” to be life after death, but now I think it may be more. We can mindfully carry the message of Christ into our ordinary daily lives — into the newness of spring, summer, and the years to come. We can change and be changed. Now that we know what we know, how can we continue to live as we did before?
A few months after Tim began to speak in the high schools, the director of RAIN, Trudy James, asked Tim whether he and I might speak at churches as a couple. She wanted us to continue helping her give faces and stories to AIDS. Trudy was a former hospital chaplain who had recently been awarded a seed grant for her organization. She was tasked with figuring out a way to use the state’s churches to get support for people with AIDS, raise awareness, and erase stigma. Her idea was to spend Saturday mornings training volunteers to serve as caregivers for HIV-positive people in their communities. In teams of 6-10 people, trained caregivers were assigned a care partner, and that team would stay with their partner for the length of their journey.
What happened in the years that followed was miraculous. Many people with AIDS in small towns had been afraid, ashamed, and isolated. Some had been abandoned by their families. As Trudy put it, “People with AIDS were astounded to be so well loved by their care teams, and team members felt they were living their faith in real ways.”
Here’s what else Trudy had to say about the transformational work of care teams:
Care team members took care partners to the hospital, and to the park; prepared meals, planned parties, and listened to care partners review their lives and plan their funerals. In small towns, they took patients to the dentist in the middle of the night, and sat with them as they were dying. The AIDS doctors noticed that their patients who had care teams did better and lived longer than their other AIDS patients. Teams fell in love with their care partners; care partners fell in love with the teams.
Now we call such work “palliative care,” but then, it didn’t have a name.
In the following decade, Trudy helped ten other southern states start RAIN care teams for people with AIDS. In Arkansas, by the time reliable AIDS drugs were available and people no longer needed so much help, 1,500 volunteers were working on 127 care teams in forty cities and towns. Together, they had served 500 care partners with AIDS. When you drove through the state, you could see RAIN bumper stickers on cars, reading “Love Makes a Difference in AIDS.”
Something in the culture had turned. In what would turn out to be the final year of Tim’s life, he could not go anywhere without a high school-aged waitress or grocery bagger recognizing him from their school assembly, and dropping their work to shake his hand or give him a hug. Love really did have a ripple effect – it really did make a difference.
I knew a lot of stuff when I was twenty-three, but I didn’t know everything. Like I said, Tim was not Jesus, so I didn’t really need his death for my life to change. My second life began the day I stopped being afraid and instead asked, “How can I help?” I had to be a part of the change, even if what I did was small. I also didn’t realize how much small actions matter – that large gestures, like the national March for Our Lives in Washington last week, are really only the accumulation of small and mindful deeds. And I didn’t understand that gifts never move in a single direction. I had focused so much on the ways I thought the powerful needed to give that I had failed to consider how much the poor, the exiled, the very old and very young, and the sick all have to offer. It turns out that the powerful can be poor in ways they can’t imagine. Jesus knew this, too, of course, and says it more eloquently than I do. Intellectually, I knew. I understand it better in my body now.
At the end of each care team training, Trudy would show a five-minute film by David Weissman, SONG FROM AN ANGEL, and I will leave you with this, too. It’s the final performance of San Francisco theater troupe founder Rodney Price, who was diagnosed with AIDS in 1987 and died in 1988, two weeks after the film was shot. From his wheelchair, Price sings and tap-dances a song about his own death, “I’ve Got Less Time Than You.” His performance remains one of the most moving I’ve seen; even today I am struck by the radiance and peace in Price’s face.
The story of Trudy’s work with RAIN can also be found on the blog of writer Victoria Noe, www.victorianoe.com.
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