I renewed my driver's license in Rhode Island in 1991 when I was 20 years old. Color brochures next to the many forms and notices at the Department of Motor Vehicles (DMV) encouraged organ donation. I filled out a form, and when I got my shiny new license, I also got a bright yellow sticker for the back that read “ORGAN DONOR.” For days and weeks afterward, I imagined dramatic scenarios in which I might die suddenly—a motorcycle accident perhaps!—and how my choice at the DMV might one day give life, or at least a fighting chance, to someone I would never know.
I made that decision at the DMV because of the example my mother had set for me. Eight years earlier, she had called a family meeting (the only one we ever had) to discuss her decision to donate her body to the Medical University of South Carolina when she died. She cried as she talked about it. She was in remission from her second bout of metastatic breast cancer, and I can only imagine how difficult it was for her to talk to us so directly about dying. What made it possible, I think, was that she wasn’t only talking about dying—she was also talking about something she wanted to do that might one day help find a cure for the very disease that was taking her life. When she died in 1986, we honored her wishes. Some time after that, my father made the same arrangements. And it was something I wanted to do as well. By putting that yellow organ-donor sticker on my driver's license, I felt a proud link to my mother’s courage and nobility.
When I tested positive in 1994, I took a black magic marker and crossed out the organ-donor sticker on my license. While I grappled with fear and anger and confusion, one thing seemed terribly clear to me: My blood, my organs, my body were now all poisonous. Not only had I lost the ability to help someone by donating an organ—I had actually acquired the capacity to do harm. So I gave up thinking there would be some use for my body or its parts after I died.
All this changed recently when I heard about the HIV Research Program (HIVRP). Funded by the National Institutes of Health, with a mission to procure organs and tissues from HIVers for research, the new project actually wants our diseased parts! Some critical studies seeking to identify exactly how HIV hides in latent reservoirs of tissue—escaping the effect of drugs and preventing a cure—are already approved, funded and ready to begin, but for one thing: There aren’t enough organ and tissue samples. (The very first came from a person with HIV who was moved to donate in the wake of 9/11.)
Remaking the decision to become an organ donor has taken me to strange emotional and spiritual territory. Is it possible to think of my body as just one of many things I will someday leave behind? Something that I won’t need any more than I’ll need my favorite sweater or a pair of practical shoes? Isn’t my body just temporary, and aren’t “I” more than just “it”? Is there life after death the way I learned it in Sunday School? Deep down, I believe something good happens when our hearts stop, and I imagine it as a wonderful reunion with all the people we’ve loved and lost. I’m pretty sure that we don’t need our bodies to get there.
Of course, while we’re here, we do need our bodies. And while we’re fighting every day (in sickness and in health) to beat this disease, it helps to focus on all that is beautiful about life—and not to have too seductive a vision of what may come next! Truly accepting that you have HIV means, among other things, getting in touch with your fears of mortality—and, whatever your spiritual tradition, finding out what you believe about the connection between this life and the next.
The friends and families of HIV negative people who donate organs can witness a direct link between those two worlds: In the death of an HIV negative donor, another’s life can be literally saved. And increasingly the life that is saved could be your own, thanks to the growing number of success stories of liver transplants in people with HIV and/or hepatitis. Of course, there would be many more if more non-HIVers were willing to be organ donors.
Now is the time to ask HIV negative friends and family to consider giving this gift of life. But before you do that, put your lymph nodes where your larynx is and make that gesture yourself. Call HIVRP’s Kate Maloney, RN, at 800.222.6374.