April 20, 2011
I felt sorry for people. I felt sorry for animals. I even felt sorry for my stuffed animals when I didn't give them enough attention or got tired of playing with them. I was the kind of kid that dogs and cats 'followed home' all the time. By the time I was 8 I had already realized that there was a tremendous amount of pain in the world. Although I also saw so much beauty in life, the suffering of others was overwhelming, suffocating. It haunted me.
The transition from smoking a few joints and swallowing my mother's Valium on occasion to becoming a full-fledged drug addict was an easy one for, among other reasons, it numbed the pain. I didn't think about the lonely old man with the sad eyes or the dog that stayed tied up, alone, outside, 24 hours a day; and I especially didn't think about what was going on in my own life on a daily basis. I simply forgot the world existed outside my quest to stay continuously numb.
Valentine's Day 1995, I was 26. As I opened the door to the methadone clinic that was conventionally a 3-minute drive from where I was living with my then boyfriend, the security guard called me from behind and told me Kim wanted to see me. That was a bit strange as I had just seen her the week before, as I did every few months. She and another woman were the HIV pre- and post-test counselors for the clinic. My HIV results had come back negative again. Because my boyfriend had HIV and we participated in high-risk behavior, I was tested often. After so many negative results I had begun to think I was invincible. That I was incapable of contracting HIV. Yea right.
As I passed my counselor's door I noticed it was open, which was unusual as all the counselors kept their doors closed. She spotted me passing and called out for me to go see Kim. Uh-oh, I thought. By the time the nurse at the medication window gave me the same message I was sure -- there had been a mistake.
When I walked into their office the two women were waiting. Any shred of hope I had was dashed when I saw their eyes. Kim looked at me and she seemed lost for words. I suddenly felt bad for her. It's horrible enough to tell someone they have HIV but to tell them they don't and then oops, sorry, we're wrong, you actually are going to die, jeez, that must really suck. 'It's okay I know,' I told the two women as I sat down.
Kim proceeded to tell me that the tests go out in batches and the batch that mine was in came back with no positive results, so they assumed mine was negative. But my test actually took longer and came back after the others. I was HIV positive. In hearing the words I cried, which completely shocked me. Even though it was barely 1995, before the days of HAART, when HIV actually did mean you had a good chance of dying, living with and loving someone with HIV had made me convince myself that it was no big deal. That just because he had HIV it didn't mean he'd progress to AIDS or ever get sick. I had decided that if I ever tested positive that it was no huge thing and I'd be able to deal with it no problem. I was wrong.
As I started to cry, so did Kim. We had gotten to know each other a bit and each testing session consisted of personal updates and a lot of laughter. Even so, the fact that this woman could care enough to cry for me really touched me. It made me cry even harder.
Even though I was on methadone, I was a hard-core heroin addict. I had not stopped with treatment and was unsure if I could stop or more importantly, if I really wanted to. I knew I could be so much more and do so much more with my life but the motivation to change, to fight to overcome my addiction, simply was not there. It really was a case of 'what for?' My boyfriend and I spent our days running back and forth to East New York, copping, getting high, copping, getting high. That was our life.
I was miserable. I knew I was pathetic and hated myself for what I had become. Eight months before meeting my then boyfriend, I had lost my partner of 4 years to hep C. He had died in my arms and my life had lost any meaning. Then, even more than ever, drugs were all I had.
Fast forward 5 years to July of 2000. I was one amongst thousands on the streets of Durban, South Africa. It was the opening day march at the 13th International AIDS Conference (IAC). The power and elation I felt as I marched and chanted alongside countless other people with HIV and AIDS, activists, advocates and others, was intense. The strength we had together, the raw, unfettered emotion that bubbled from the crowd was like nothing I had ever felt before. Whereas HAART had begun to create complacency in the U.S., here in sub-Saharan Africa, the heart of the pandemic, the world had turned its back on the dying. Africa was burning. We were saying 'enough'.
The tears flooded my eyes and blurred the words 'HIV positive' on the t-shirts around me. In that part of the world people were very often banished from their families and villages if they were found to be HIV positive. It was not uncommon to be severely beaten or stoned to death. Murdered for having the virus -- killed for dying. Wearing those t-shirts that proclaimed they had HIV meant that these people, that stood next to me, shoulder to shoulder, holding my hand in defiance, faced such a future for what they were doing at that very moment. They were putting their lives on the line and some of them would lose.
The 13th IAC was where it all began to change, when the world began to hear what I and so many like me had been screaming for years. That the AIDS crisis in the developing world was raging and we had to do something. People in sub-Saharan Africa, India, Latin America etc., had no access to the medications that was saving the lives of people with HIV in wealthier countries. It was at that conference when the world began to listen, and to act.
After the march, I stood talking with my friends. I felt a tap on my shoulder. I turned to see a familiar face though I could not place it. 'Jeannie?' this woman I knew I knew from somewhere said. She looked extremely shocked to see me, completely floored. 'Jeannie, that can't be you?!' I said yes, it's me, laughing as I asked her where I knew her from. She hesitated, unsure of what to say. Her reaction to me was so intense that my friends had stopped talking and we all stood waiting for her answer. It was obvious that she was afraid to break confidentiality. After I assured her that she could speak in front of my friends she said 'It's me, Kim. I gave you your HIV results. I can't believe it's you,' she continued. 'How are you here, what are you doing here in South Africa?!'
Kim told me that she had thought of me often over the years. That, that day, she and the other women had thought for sure that I would not survive the year, that her words to me were the beginning of my end. I explained to her that my HIV diagnosis had changed me. It made me look at my life and the person I had become. My boyfriend and I stopped getting high together. I started living the best way I could. I began writing and copy writing poems and song lyrics. Got them published where I could. I bought a bike and started riding a lot and working out. Eventually my relationship ended as we quickly found we had nothing other than our addiction in common.
I decided to get a job. A counselor on another methadone program I was on recommended me for a job as a peer educator at an AIDS service organization. There I met an amazing person who would become my mentor and introduce me to the world of AIDS activism -- another side of life where I could be a part of something important, something bigger than me and my addiction. I began attending meetings, learning the science of HIV, going to HIV conferences and demonstrations. I became an AIDS treatment activist. I learned what it meant to fight for my own life and the lives of others with HIV.
I ran into Kim once more the last day of the conference. She told me she was there covering the conference for a radio show. The show was about activism and the work activists do. Kim, the woman who had cried for me all those years before, told me that she closed her final piece by telling my story. She said she told her listeners of the girl I was, a hard-core dope fiend. Of how she was so sure that Valentine's Day she was telling me my life was over. She told them that when she asked how it was, how it could be that 5 years later the same girl was standing on the streets of South Africa, alive, thriving and fighting that I told her simply: 'I became an activist'.