How HIV Affected My Life

My mother contracted HIV through heterosexual sex in 1986, a time when women -- especially white, middle-aged, divorced moms from upstate New York -- were not considered a group at risk. Because of the stigma associated with AIDS at that time, so early in the epidemic, my mother kept this information to herself. She told almost no one she was HIV-positive, including me.

Looking back, I can identify clues about my mom's illness. She had always been healthy and was never ill. She took care of herself and was always so full of energy. People would tell us we looked like sisters. And then, I noticed that she began to be sick more frequently. I was away at college and not really paying attention to matters at home. Hindsight is so much clearer and while I began to realize that something was terribly wrong with my mom, the idea that she had AIDS was unbelievable. Still, she was ill more frequently and staying ill for longer periods of time. Bits and pieces of information trickled down to me, and I learned that she had toxoplasmosis. These days, the link between toxoplasmosis and AIDS is so obvious. But back then, the connection was not readily apparent, especially when not thinking in the context of AIDS.

Surprisingly, I fully realized my mother had AIDS while watching the television news. I still remember that day. It was 1992, and I was 19 years old and a sophomore in college. While getting ready to attend my next class, I overheard the announcer explain that Arthur Ashe had just announced he had AIDS and was suffering from toxoplasmosis. In an instant, the pieces came together. I felt like someone had just punched me in the stomach.

A month later, my family finally acknowledged that my mom had AIDS. Two months later she died from pneumonia. In total, my mom lived 6 years after becoming infected. Two of those years were largely spent in hospitals. This was the age of AZT monotherapy, and there was little defense against the onset of opportunistic infections.

How has HIV affected my life? So much. I miss my mom so much it hurts. And she has missed so much of my life -- college and graduate school graduations, birthday parties, weddings, births. She never met my husband, and she will never hug her grandchildren. Obviously, I am angry. Why my mom? I know that this is a common question for anyone with a terminal disease or for anyone who has lost a loved one from any cause. But why did HIV have to impact a middle-aged woman with no risk factors other than being recently divorced (from a marriage of almost 20 years) and joining the dating pool again? I knew the man who infected her -- he died a few years before my mom died (though I didn't know his cause of death at the time). To this day, I do not know how he became infected, nor will I ever know.

When I tell people about my mom, they are shocked. Only gay men, drug users, and hookers were HIV-positive in 1986, right? Sometimes I think that if my mom had to get HIV, why not 10 years later, or even 20 years later in an era full of effective treatment options. And if she had to die, why not breast cancer? Women who have breast cancer are celebrated and made heroes. Women with AIDS are stigmatized and avoided (this was especially the case in the US during the late 1980s). My mother was so ashamed of her disease she couldn't even tell her children. For years after her death, I would lie about how she died. I would mutter "cancer," when people asked. The obvious grief on my face stopped them from asking more. Sometimes I am angry with her. Why didn't she practice safe sex? And I answer, because she didn't know she was supposed to.

Unfortunately, she became infected when there were no viable treatment options. I call it the "caveman" era of treating HIV. I think those new to the field of HIV and AIDS do not fully understand how bad it was. In fact, my mother couldn't even be treated at our local hospital because they did not have the facilities, or the wherewithal, to treat someone with AIDS. Instead, she (and my family) traveled 60 miles each way to a large medical facility that could deal with "infectious diseases." I am not minimizing the seriousness of HIV today in the US, only pointing out that great advances have been made.

As a scientist, I avoided the field of HIV for many years. It was too painful to relive everything, especially early on in the epidemic when there was no hope anyway. However, I often wonder if these events pushed me in the direction of science as a career. I often wonder what my life would be like if she had lived. My world was so much safer and secure with her there. Would I have moved across the country to Houston? Would I have been driven enough to pursue my Ph.D.? Would I be married to my wonderful husband, whom I met in Houston? And finally, would I be blessed with my wonderful and highly entertaining children? Life is strange. Now, as a mom myself, I write about HIV and AIDS as part of my career. Perhaps I have come full circle.

Jennifer Newcomb-Fernandez, Ph.D., is the contract Editor for The Center for AIDS Information & Advocacy and the president of Newcomb Scientific LLC (newcombscientific.com).