For our World AIDS Day 2011 section, we wanted to capture the diversity of the AIDS community. So, we reached out to people across the world -- regular contributors and those who have never written for us before -- and asked them to guest blog. These columns are written by people who are living with HIV, have been affected by HIV, or work in the field.
In 1983 I crawled into detox off the streets of New York. AIDS was not in my consciousness or that of any of the doctors that were treating me. They tested my liver and found I had non-A non-B hepatitis. I was devastated.
I had broken up with my bisexual boyfriend and we lost our career and I had careened into alcohol and drug addiction. I had heard of AIDS since so many of my friends were gay, and began warning them to be careful of that "gay disease."
In 1985 I was living in New York clean and sober, happily sharing my apartment with my friend Laurie. We were young. I worked at Macy's on 34th Street as seasonal help in the cosmetics department with some other friends. Early recovery jobs are fun and stressless to avoid relapse. No men, no hassles. I had a purple Mohawk and wore a brown wig to cover it up so I was employable. I wasn't ready to let go of my radical attitude yet.
It was a happy, magical time. I had a new lease on life after drug addiction took me down to homelessness. Now I was listening to "Jingle Bell Rock," Santa's breath was reeking of alcohol as he bellowed "Ho Ho Ho!" and the Salvation Army bells were ringing on the streets of New York City. The cool air filled with the smell of chestnuts roasting from the vendors while a hot smudged air of pollution was wafting up the stairwell from the subway.
My oldest friend Shelley had come down from Boston and brought a friend with her to visit me at my cosmetics counter. A handsome man with salt-and-pepper hair who also played blues guitar and lived in Cambridge, Mass. He was charming as he made conversation with me. I was flustered. I could feel the red flood my face. I didn't know what to do with myself. It had been over a year since I had been involved with anyone and a first being clean; this was all new.
He liked me. Shelley gave him my number and he called me several times that night. I let it go to my answering machine and listened back carefully. The next day, I asked Shelley: "What's that guy's name again? He called me three times but I didn't answer. I was afraid." "His name is George Lewis," she said. And gave me his number to return his call.
I did. The romance was on. Regular Eastern Airlines shuttle flights from New York to Boston. My knight in shining armor had arrived as a single parent wearing black jeans and a T-shirt, leather jacket and a guitar slung over his back like Bruce Springsteen. I met his 15-year-old son Blue, a giant boy who was 6'5". We went to watch him play hoops and went to dinner. Then he flew me back to New York. He didn't just fly me back. He got on the plane with me, brought me to my apartment, kissed me good night at the door and went back to Boston.
"I am so going to marry him. As soon as I get a year clean," I thought. We connected immediately. We both wanted children. He told me about Blue's mother, his young marriage and his decision to raise his son on his own since he was the better of the two parents. We waited 90 days to have sex, a time limit I imposed on myself that I borrowed from my 12-step program. I wanted to do things differently than I had before: getting to know someone before sex, not after! A novel concept for a compulsive addict.
We got engaged and began making our wedding plans. We were to be married on a yacht in New York Harbor just like Billy Joel and Christie Brinkley. I wanted to get pregnant as soon as I said "I do." I was 32 years old. It was time. All the right things were in place. The right husband, already a father and would know what to do; I had an agent and the promise of a new career. I was auditioning in New York between my visits to Cambridge preparing for my new life as a wife, mother and independent woman.
I was in Cambridge when I got my first phone call from my friend Laurie's mother. She was crying. She said, " Laurie was in the hospital. They took every conceivable test and couldn't find out what was wrong with her. She's dying. Can you come in and see her?"
"What do you mean they don't know what's wrong with her? How could she be dying?" I said in disbelief. "I'm sure she's going to be OK. " Her mother broke down in tears. "OK," I said. "Don't worry. I'll be there. What hospital is she in?"
"Mt Sinai Hospital," she said. I made a trip to the hospital to see Laurie, my old roommate who I worked with in Macy's during Christmas. She hadn't felt well, and was running high fevers with rashes, fatigue and dropping pounds like crazy. I remember asking her how she was losing so much weight. "I'm having a lot of sex!" she'd answered with attitude, still pissed at me for asking her to move out since she was drinking and men were crawling on my living room floor undressed and drunk. We made trips to the emergency room when her fever was scorching. No one knew what was wrong with her. Then she would feel better and it seemed to pass. Now I was visiting her hospital room.
When I arrived at the hospital there was a sign on the door that said, "CAUTION! Body Fluids." There was a basket next to the door with a gown and masks, and a tray nearby with latex gloves to put on to protect yourself when you entered her isolated room. This was not what I expected as I bounded happily to visit her in the hospital. Suddenly, a jolt of reality as I covered up. I cautiously walked into Laurie's room; there she was wasting away. Her arms were waving in front of her face, circling around her body through the air. Her eyes were rolling and unfocused in her head. She was hallucinating from a brain infection.
Her mother sat in a chair in the corner of the room with dark sunglasses on. She peered over her glasses and said, "We know what she has but we're not going to talk about it."
I spent the day with Laurie. Overwhelmed by what I was seeing, I couldn't seem to leave her side. And then a moment of clarity, she looked at me. "They spent a lot of money on this wing," Laurie said in a soft whisper, with an exhausted voice. She knew where she was. She knew what she had. She knew she was dying. A horror.
I went back to my new home in Cambridge and a few days later I got "the call." Laurie died. A graduate of the University of Arizona, a biochemist and a heterosexual female who died of AIDS when they thought women couldn't get AIDS. Her obituary said she died of a "rare cancer." That's what they always said when someone died of AIDS back then.
After Laurie died I decided I should get my AIDS test to get a clean bill of health so I could get pregnant as planned. But that was not to be. My positive test came as a shock since I was perfectly healthy and not sick like my friends who had died. I was handed a death sentence. My fiancé thankfully didn't get infected; he married me, but it was without physical intimacy. I felt trapped, terrified and guilty, feeling my husband had made a bad deal. No children, no career and an added financial burden to him instead of a partner with her own career. Therapy saved me. My 12-step meetings and friends saved me. I chose not to get pregnant and risk having a positive baby. Adoption wasn't an option in my marriage.
After seven years of marriage, my husband and I divorced. I became an outspoken activist, counselor and educator. George went on to marry a young woman and had the babies with her he couldn't have with me. Two lives were born that might not have been had I not removed myself from the tragedy of our lives, my diagnosis as a woman with HIV in the '80s. His having children, though heartbreaking to me, was life affirming knowing life goes on and I wasn't being a burden.
I have used protection and been open with sex partners about my status. HIV has stopped with me. "Getting to Zero" is taking personal responsibility one person at a time. A cumulative effect if each person who is positive does their part by educating themselves and others, practicing safer sex and promoting testing. KNOWLEDGE IS POWER. Once I found out my status, I became proactive: Staying healthy by eating and living well; taking responsibility for my health by staying informed. There is more hope today than there was in the '80s when there was no hope. Treatments, HIV specialists, communities in your area or online. Today, women can have healthy babies if they know their HIV status. If HIV can stop with me, it can stop with you. We can bring it to down to zero one life at a time.
World AIDS Day is for celebrating life. To honor those we have lost, our history, our victory and our bright future as we march with our candles of memories into our future where AIDS is no more. Imagine. Visualize. Act.
Sherri Beachfront Lewis is an HIV advocate, entertainer and multimedia maven based in Los Angeles, Calif.
Read more of HIV DIVA, Sherri's blog, on TheBody.com.