I was referred to Trudy James by another Chicago author. It was one of those serendipitous moments. I don’t know how else I would’ve found out about Trudy and the amazing work she has done in the AIDS community. But I guarantee you will learn more about her in my book, Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community:
I was accepted into a one year Pastoral Care internship at the University of Arkansas Medical Center in Little Rock in 1989. A newly-trained chaplain, from Kansas, I knew nothing about AIDS, a fearful, stigmatized disease slowly creeping into the South. I learned fast from the eight AIDS patients I served that year.
At the end of my chaplain internship, after learning that a dear childhood friend in Kansas had died of AIDS and they would not have a funeral in my hometown, I applied for a new half time position in Arkansas as director of RAIN, the Regional AIDS Interfaith Network. It was a four-state experiment funded by the Robert Wood Johnson Foundation to see if people in churches could become part of the solution to AIDS hysteria in the South, since some churches were definitely part of the problem.
My assignment was to do AIDS education in religious congregations: any way I could figure out to do it. That included recruiting, training and supporting faith-based volunteers in teams of 6 to 10 members. As CareTeams they were to become supportive friends to one individual or family affected by AIDS—their CarePartners. It was a noble experiment indeed. As a woman who had been shunned and often silenced by my own religious upbringing, (Missouri Synod Lutheran) I identified with AIDS patients who were being shunned, silenced and stigmatized. I could also identify with the people in the pews, having been married to an Episcopal priest for 22 years.
I knew how to tell stories. And I wanted others to be allowed to tell their stories. As I traveled the state of Arkansas, speaking in congregations of all sizes and varieties, (and also Rotary clubs, Dental Associations, Ministerial Associations) I always took a person living with AIDS or a family member with me. They put a face on AIDS in a state where most people did not believe that “AIDS could happen here.”
RAIN was an amazing success. Two years into it, when there were fifteen CareTeams, I wrote a statewide expansion grant proposal to the RWJF Funding Partners Initiative. We received a three-year grant and matched it with local funders.
CareTeam members took Carepartners to the hospital, and to the park; prepared meals, planned parties, and listened to CarePartners 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 CareTeams did better and lived longer than their other AIDS patients. We were doing Palliative Care before there was a name for it.
Teams fell in love with their CarePartners; CarePartners fell in love with the teams. The RAIN community gathered quarterly at large interfaith RAINdays, to learn and celebrate together. Isolated individuals from all corners of the state attended the annual four-day Heartsong Retreats. CareTeam volunteers learned to listen to young men and women talk about their own deaths. Everyone learned how to grieve the constant losses so the work could continue.
I was the director of RAIN in Arkansas for ten years. In 1996, 60 of our CarePartners died. By 1997 you could see bumper stickers with our slogan, “Love Makes a Difference in AIDS” throughout the state. There were 127 CareTeams (1500 volunteers) in 40 different Arkansas cities, towns and villages. In ten years the teams had served 500 CarePartners with AIDS.
During those ten years I traveled to ten other states to begin and support the CareTeam model because it seemed so important and powerful to me. I saw miracles happening everywhere. People with AIDS living in small Arkansas towns, or moving home to die from either coast were astounded to be so loved by their CareTeams, and team members felt they were living their beliefs in real ways.
In 1997 I left Arkansas. I still loved visiting CarePartners and recruiting and supporting teams, but I was weary of administration and fund-raising and the ongoing grief. I moved to Seattle because two of my three children lived there. After several months of healing retreat time, I began another AIDS CareTeam program as part of a Seattle Multifaith AIDS Agency. I subsequently trained 70 AIDS CareTeams in the Puget Sound area, worked as a Cancer Care chaplain and began a small business called Heartwork.
When I retired in 2007, I wanted to use what I had learned from those early AIDS days to see if others could become comfortable talking openly about death and planning for a good ending. I initiated a program of four-session, community-based end-of-life planning workshops called “A Gift for Yourself and Your Loved Ones.” After facilitating 50 such workshops, I worked with a filmmaker to produce a film, “Speaking of Dying”, which premiered on April 16, 2015.
Today I travel about screening the film, doing workshops, and training more facilitators. I begin every presentation by sharing what I learned from people with HIV/AIDS and AIDS CareTeams in the South in those early days of the epidemic.
I am grateful.
Trudy James is a graduate of the University of Kansas and Union Theological Seminary in New York City and an interfaith hospital chaplain. She learned hands-on lessons about death, dying and grief in the early days of the AIDS epidemic in the South where her ground-breaking work with AIDS was honored at the Clinton White House. Later, she developed an AIDS Care Team program in Seattle and served as a chaplain at the Seattle Cancer Care Alliance. After retiring, she spent four years pioneering community-based end-of-life planning workshops and two years producing a 30-minute documentary film based on those groups. The film, Speaking of Dying, is useful for individuals, groups and families who wish to become more comfortable discussing the choices and resources needed to plan for good endings. Learn more here.