My HIV Diagnosis Became My Opportunity to Say 'Yes' to HIV Activism
I left New York in 1987, three weeks after my diagnosis. I had just gotten married, and my husband and his son lived in Cambridge, Massachusetts, so that was the plan. That was about the only thing that went as planned. As a newlywed and now stepmother who was newly diagnosed, I just wanted to relish the time I had left to experience being a wife and a mother. My career as an entertainer seemed impossible now. But, in front of me was a gangly, pimply-faced, six-foot-four teenage boy with a scar causing his eyelid to droop, which made him look even sadder than he was. Since his mother had left him as an infant to be raised by his father, he was waiting for a mother and there I was. Though the terror and trauma of suddenly being handed a death sentence, I often wanted to jump out of my husband's moving car as we drove across the Longfellow Bridge. He would reach across my chest, like my mother used to when I was a child before seat belts, to keep me inside and safe. I kept going to my recovery meetings, hoping to stay alive long enough to see my stepson graduate high school.
After My Diagnosis
Immediately after I was diagnosed at Mass General Hospital, I was shuttled into the office of a therapist assigned to people with life-threatening illness. The waiting room was filled with young men who had wasting syndrome and portable oxygen tanks. When I walked into the therapist's office, we sat in uncomfortable silence. I started to talk, "I guess you know why I'm here." She quietly acknowledged, "Yes." Trying to hide my emotions, in a soft quiver I replied, "I'm, um, well, I'm getting married." There was no response. "I tested positive for the AIDS virus." I giggled nervously and chattered trying to make it a joke: "Not a very good time for this." More deafening silence until I screamed, "It's not fair!" Tears gushed from my eyes and covered my face; snot dripped from my nose; I sobbed heavily, repeating, "It's not fair!" Her voice responded calmly as she gently touched my untouchable hand and said, "No it's not." That was the first time I had cried about my HIV. I had been strong for my fiancé, my stepson and my parents. But now I was broken and grieving my precious life that I loved so much. I continued going to my twelve-step meetings and heard: "What doesn't kill you makes you stronger."
I got a call from my friend Mark who was also in recovery and living with AIDS. He asked me if I could cover for him at a school talk because he was too sick to make it. I was reluctant, but he wouldn't let me say no. He was so encouraging. "Come on Sherri. You can do it. You'd be great at this. You speak all the time in meetings." "Yes, but that's different," I said. "I'm safe there." I knew speakers who were handcuffed just for being positive and sharing their stories. Students had to have their parents sign permission slips to attend a class to hear a positive speaker. Mark and I hadn't known each other long, but we both had been handed a death sentence and were among the few in our largely hetero recovery meetings who shared about it. Speakers in those days shared their stories, since there wasn't much information except to promote the use condoms and describe the basic body fluids that transmit HIV and what HIV means, as well as to explain the difference between HIV and AIDS and how it is not a gay disease but a human disease that doesn't discriminate. You couldn't surprise students with your status since it was obvious when an AIDS speaker entered the classroom -- except for me who looked perfectly healthy but was HIV positive, which was a message in itself. The speaking engagement was at Berkeley School of Music, and it was a great experience. Mark went missing for the next few weeks and was eventually found dead in a garage, his body covered in morphine patches. I just wanted to bury my head in a pillow and spend time with my stepson for the short time I had left.
My local twelve-step meeting was located in a basement at Harvard. I was sharing about staying clean living with HIV when a Harvard professor in the meeting asked whether I would be willing to come and talk at a staff meeting the next day. Like a good twelve-stepper I said, "Yes" and went to Harvard Square to get an appropriate costume for such a thing and washed the purple out of my hair. I showed up at a rather intimidating conference room surrounded by academics. This for a girl who only wore Betsey Johnson and joked that H stood for heroin! They picked my brain, which was ripe for the picking. "How do you cope?" "How do you stay healthy?" "What do you eat?" "How do you live?" And lastly, "Would you like to work at Harvard with us?" "What?" It was the line out of Taxi Driver: "Are you talkin' to me?" But my practice was to say, "Yes," so I did.
Project Outreach was an eighteen-month Harvard Research Program. Its primary purpose was to test addicts for HIV, give them their results, counsel them and provide a support group. My office at Cambridge Hospital said "Sherri Lewis" on the door, while others had Ph.D. I had a waiting room filled with addicts, many of whom were women with children waiting for results and needing but not necessarily wanting recovery. The focus wasn't alcoholism/addiction treatment, it was harm reduction for addicts and needle exchange. I struggled only briefly with that since I was in recovery, but I let it go, realizing it was progress not perfection, and it could lead to recovery. This was HIV prevention. I felt like a soldier. I was supervised, trained and attended ongoing workshops and mandatory conferences on HIV and the latest updates given by Anthony Fauci and other esteemed top researchers. I delivered my notes and spoke of our clients' cases using my Diagnostic and Statistical Manual of Mental Disorders for psychiatric terminology. I loved my government metal desk and chair so much that I would later have the same in my home office, as they conjured up memories of my grandmother, a social worker named Gertrude.
My pregnant, addicted clients with HIV were the most painful. It was a crapshoot whose baby would be born addicted and positive. I would dash across the courtyard at lunchtime to visit the nursery and pick up the underweight babies born with HIV after learning that a loving touch from a human being can work miracles. A few years later, I saw one of the young HIV-positive woman I had counseled who had given birth to an addicted baby. She was now clean and standing next to her adorable little girl, who thankfully tested negative. I lived for moments like that, which took some of the grief and longing away. The letters, drawings and cards I received from kids over the years filled me up. Someone pointed out to me that those were my kids. And, indeed, they were. God didn't leave me empty.
I completed the eighteen-month grant at Harvard the same year my father died and my husband and I separated for the second and final time after a troubled seven-year marriage. I started a support group for addicts with HIV, funded by the Ryan White Program, in a recovery house in Somerville, Mass. Some of the earliest treatments with AZT monotherapy were available, but the side effects were neuropathy and nausea, diarrhea, painful headaches and joint pain, and they still no lasting effect on return to health. People were still dying of AIDS. Most of my group died of AIDS. Hope is a hard sell when no one shows up to your group because of another death.
Helping Others Help Others
I went to a speakers' training at the AIDS Action Committee and continued to get new information on ineffective treatments and the ever-growing doomsday statistics on the rate of infection. I facilitated a support group at the Boston Living Center. Next to my room, I could hear the ACT UP meeting. I briefly popped in before my group, feeling as if I was missing the action, but I knew I was where I was supposed to be. My healing path was meditation, Louise Hay and my study on healing diets. I met a wonderful sober actor in my fellowship who had a non-profit prevention/education theater troupe called the Improbable Players. She had a grant to develop a show about HIV and addiction. She heard about me and asked whether I would be interested. I said, "Yes." Many shows and years later, that led to my own one-woman show performing and singing my story. I had so many speaking engagements that I started my own speakers bureau, paying forward the trainings and information to other speakers. But, most of all, it was the children's letters and drawings sent to me from all the schools over those years that filled me and my filing cabinet. These children who had lost their parents to addiction, sexual abuse and AIDS and were in alternative schools. Their messages were funny, sad and thoughtful way beyond their years.
I had the honor of educating and training the first generation of UCLA AIDS Ambassadors in 2005. It was a rich program about HIV, the history of art, AIDS and activism, including science, and we visited laboratories to hear firsthand from the researchers what they working on. We screened AIDS movies, like I had when Harvard screened Philadelphia. I was so proud of how eloquent and well educated our speakers bureau was and of the outreach they were doing to their peers on campus, in their communities and around the globe. What began with six students quickly grew into a campus movement: Knowledge is power. Thanks to social media, I still see those students, now adults married with children, and they are doctors, public health providers in Tanzania and around the world.
For me, my status was outed by a local network, and I took it as an opportunity to say, "Yes," to being an activist; "Yes" to being interviewed not for vanity or fame but in defiance, for survival and to fight stigma. I had held my husband's hand as we listened to Magic Johnson tell the world on television that he had tested positive for HIV, and years later, I met him at the AIDS Museum in Fort Lauderdale, Florida, both of us smiling and healthy. Activism powered up by saying, "Yes!"
Read Sherri's blog, HIV DIVA.