I've been living with HIV for the last 16 years. Though my status is negative, I've spent days in the hospital for it, it's affected my sex life, and it has caused endless anxiety and heartache.
I was 9 years old when Magic Johnson announced he was HIV positive. My best friend asked me if I knew what HIV was. I said yes, although I really didn't. The wannabe-know-it-all in me just changed subjects. We rode our bikes to the park and never mentioned HIV again.
Three years later, I would eventually become all too familiar with the virus. Johnson announced his status to a roomful of reporters on Nov. 7, 1991, and my father announced he was HIV positive one Sunday after church in 1994. Unlike Johnson's press conference, there were no cameras, flashing lights or rapid-fire questions.
My father was admittedly promiscuous and rarely used condoms. Though I didn't realize it at the time, I was angry at him. Furious. How could he be so reckless? Was unprotected sex more important than being around to watch me grow up?
At the time, I still didn't fully understand the meaning of HIV, but judging from my father's unusually serious demeanor and my older cousin's tears, I knew it was serious. She cried, so I cried, too. My mother was no stranger to my father's wandering eye, and she assured me that she'd tested negative.
My parents separated when I was a toddler, and although I had no recollection of there ever being any love between them, I could tell that my mom was just as devastated with the news as I was. But up until that point, my only frame of reference was Johnson, who was healthy and strong. My 12-year-old self thought everything was going to be OK. Three little letters couldn't snuff out my Superman.
After my father's announcement, the virus came to mean something more to me than what was briefly mentioned in health class. I would ask my teacher questions about life expectancy and T-cell counts, when previously I had never said a peep. Suddenly they weren't just talking about some illness in class; they were talking about my father — the man whose pug nose I had, who I shared inside jokes with, and who loved to recount the time he rushed me to the emergency room when I knocked my tooth out attempting to jump from the couch to the table.
One thing I did learn was that HIV affects everybody differently. Magic Johnson wouldn't be the model for what my father's status looked like. "I'm going to go on. I'm going to beat this, and I'm going to have fun." That's how Johnson ended his press conference in 1991. And he's done just that. Of course, he hasn't beaten HIV, but his life has gone on and he has thrived. Nineteen years later, he looks healthy and has gone on to be a New York Times best-selling author and have great success with his entrepreneurial endeavors.
My father didn't "go on" or "have fun." He was admitted to the hospital for multiple stays. The man who was fiercely independent had to rely on the help of others for little tasks that now required energy he didn't have. While I was preparing to send out college applications, his virus progressed to full-blown AIDS. He eventually dropped to 120 pounds. Eight years after being diagnosed, he passed on a Thursday morning during the beginning of my spring semester.
I wasn't the one with HIV, but the disease affected me without my being infected. My life was changed in ways I had never expected. My father had antiretroviral drugs to fight off the attack to his body, but I was left to fend for myself. There was no drug to help my pain, or at least not one that I was offered. As a teenager, I wanted to be carefree and feel naively invincible, but my father's HIV status constantly reminded me of life's shaky ground. There was no thought of what I'd wear to the prom or crushing on boys. My heart was too heavy for those trivial teenage affairs.
Anyone who's ever been in the caregiver position knows the toll it takes. Living with my mom and being away at school gave me a respite from the 24-7 care (that heavy burden fell on my aunt), but weekends and visits home involved preparing meals, accompanying him to doctor visits and giving him his two dozen pills a day. It changes you emotionally to see someone you love struggle. I felt weak watching my father. He was only in his 40s but had the body of an old man. My Superman had found his kryptonite.
I didn't know how to navigate being the child of someone with HIV. If the subject of my father ever came up, either I received the sympathetic head tilt or people wanted to drill me with 20 questions. Of course there was the occasional person who made me realize that no matter how much information is available on HIV, some folks are still ignorant and mean-spirited.
During a heated argument I had with my college boyfriend, he told me that my father must have been a "f-ggot," and that's why he died of AIDS. This wasn't new to me. There was also a guy I briefly dated who thought that because my father had AIDS, then I must have it also. For days after I told him about my father's passing, he drilled me on my status.
Questions about my HIV status don't offend me. Actually, it was the norm for me to do the same with anyone I was sexually involved with. "When was the last time you were tested? How many partners have you had or are you currently with? Do you want to get tested together?" But these questions seemed to make some men uncomfortable. Talking about HIV was a turnoff to them but necessary for me.
Long before I was even sexually active, the thought of HIV and AIDS loomed in the back of my mind. I was never fearful of sex, but I grew up understanding the repercussions that can come along with it. Unless people know my story, they don't understand why HIV is so important to me. But it's serious, and so am I about prevention, testing and education.
It's been 16 years since HIV came into my life. I think about it every day that my father's not here. I would never minimize the struggle that those stricken with HIV or AIDS go through, but there are other victims as well — those without a voice, who are changed forever because of those three loaded letters.
Patrice J. Williams is a contributor to The Root.