IN MANY RESPECTS, Alora Gale, a 15-year-old high-school sophomore, has grown up in what she calls an "average, middle-class, Caucasian family." She was born in San Diego, but she and her 13-year-old brother, Mo, were raised primarily in the smaller towns of northern California: first in Grass Valley outside of Sacramento, then just outside Mendocino, in a 400-person town close to the coast.
When Alora was growing up, her mom was a graphic designer, and her father was a "jack of all trades" who usually ended up in various grade-school teaching positions. Her parents were both health-food nuts who raised their children in a conscientious, liberal manner. Until she was six years old the only things Alora thought were unusual about her life were the fact that she had never been allowed to eat a candy bar and that her mom had to drive three towns over to find a suitable grocery store.
Alora and her father, Gary, in 2000. [Photo courtesy Gary Gale]
In 1992, when Alora was six years old, her mother, Linda Brosio, went with a group of girlfriends to get tested for HIV. Alora's mother was the only person to come back positive. Right away, Alora, Mo and her father Gary were all tested as well. Alora and Mo were both positive, but their father was negative. The day Alora was diagnosed, she recalls stoically, was her mother's birthday: March 17. Her mother died four years later, in November 1995; not long afterward, the family moved to Boulder, Colo., to be closer to the resources they would need to turn to for support.
Alora can find a reason for optimism in just about any situation, and is understanding about the ignorance and fear she has seen in people unfamiliar with HIV. She recognizes that in a society often afraid to talk openly about anything related to sex, people can't help but be ignorant. So, she takes it upon herself to become educated about HIV and spread that knowledge the best way she can. She has been speaking to school groups about HIV/AIDS since she was in junior high school.
Alora's father has dedicated his career to providing access to information about pediatric AIDS through the nonprofit organization he founded, National Pediatric AIDS Network (http://www.npan.org).
What was it that made your family decide you should all be tested for HIV?
My mother was in some kind of women's group, and one of the women there brought in an article about HIV one week, and they all thought they should go get tested. So the whole women's group went into a clinic together. All the other women came back negative and my mom came back positive. She didn't get tested because of any symptoms. At that point we were living in a really rural part of California and they never would have suspected it.
Can you tell me a little about your family at the time you were all tested and diagnosed?
If you look, now, at all the symptoms the three of us had when I was little, it would have been obvious; it would have been hard not to see. But, because we were your average middle-class Caucasian family, in rural California, who had never been IV-drug users or had a blood transfusion, no one would have thought.
You mention that the symptoms you, your mom and your brother shared seem obvious in retrospect. What were some of those symptoms?
My brother would have night sweats and really high temperatures. And there was no reason, he wasn't sick or anything. It was just classic night sweats. I would get pneumonia or bronchitis every winter. And I got MAC [mycobacterium avium complex] about a year before I was diagnosed. I was born in San Diego, and apparently MAC was common in children there because of something in the water. So they thought maybe that's why I had it. My mom would have hair loss and chronic fatigue. My brother was a chubby kid until he hit kindergarten, when he went from being that cute chubby little toddler to being a tiny little stick.
Does anyone have any idea why your dad remained negative?
Well, women are eight times more likely than men to become HIV positive, first off. I'm not so sure anymore, but for a long time they thought that some people might have a resistant gene against certain strains of the virus, and that he might have the resistant gene. That might also explain why my brother and I were healthy for so long. My dad's never participated in any studies or anything like that.
When you first found out that you were HIV positive, can you remember what kind of thoughts you had?
At that point, I was six years old. My parents explained it to me in kind of an amusing way. A lot of people who are perinatally infected, if they are told at a young age, are told in similar ways. It was described to me like this: There was a monster living in my blood. The monster's name was Hivvy, and Hivvy would eat up all the good things in my body, especially the things that helped my immune system. I was the kind of kid who would continuously ask questions, like, "Why is the sky blue? How do you get it? What does it do?" I gradually learned more and more by asking questions and reading. It probably fully hit me, what it meant for my life that I was HIV positive, when I was in seventh grade. So, it took a while -- about six years from the time I was diagnosed.
When you were hit with that full realization in the seventh grade, do you remember what your thoughts were?
It meant that until a miracle cure occurred, I would be on medication, going to doctors and getting my blood drawn, and that I had to be careful with my blood. And, I probably would have to think a lot more about whether I could start a family. The entire ramifications hit me.
How have your feelings about what it means to be HIV positive changed since then?
It depends what point of my life I'm at as to what I think about it, and how much I think about it. Sometimes I'll go for a month just taking my meds as a daily routine and not even thinking about what they are for. And then sometimes I'll look at them and think, "Wow -- these are what's keeping me alive." Now I'm at a point where I look at the pills and think, "Yeah, these pills -- this fistful of pills -- are what's keeping me alive [laughter]." It's hard to describe. It was hard watching my mom die of the disease that I had, that I knew I had. I knew I could end up like her. It's hard having that realization at such a young age. It kind of changes your whole life. It really does.