Have you met other positive young people in Colorado?

In Boulder there are only three young people who are known to be positive at the local AIDS project. One is me, one is my brother, and the other is a girl who is six years old. But through my clinic, which is the Denver Children's Hospital, I've met quite a few people. They range in ages and how they contracted it, but they are some amazing people. It helps so much to be able to talk to them and share stories, and insights, and even just tips for taking meds -- it helps a lot.

	Alora and her brother Morgan during Christmas, 1993. [Photo courtesy Gary Gale]

Do you participate in an organized support group?

Our clinic has a wonderful family program. In June we're going away for a weekend. This is the third year that I'll be doing the family retreat with them. All the families just go away for a weekend, and we can talk, and bond, and share stories -- whatever they feel comfortable with. There are also other organized activities that they do occasionally, so I meet people through there. I also meet people through conferences. Also, I was in a documentary video about a year and a half ago -- I met nine other HIV-positive teens through that.

Have you started dating?

Yeah. I've had some long-distance relationships. It's hard for me to find people that I'm comfortable with, that I can connect with. One relationship was with someone who is HIV positive, and I've also met people who aren't. It's interesting to see different people's reactions. There are benefits to dating someone who's positive, such as they already know what you're going through; they've been educated (hopefully). But there are also benefits to dating someone who's negative, in the respect that they don't know what you're going through, so you don't have to share that pain -- things like that.

Do you date people at your school?

I've only been at this school for less than one year. So, I'm still looking. But I feel comfortable dating and being open. Boulder is a pretty liberal community, and for the most part people are pretty educated about AIDS.

Do you have fears about HIV?

The biggest fear is that I watched my mother almost decompose, and that was really hard. I don't want to end up like that. That's probably my only fear. She had PML [progressive multifocal leukoencephalopathy], I believe. She had quite a few things going on simultaneously. It was a condition that would slowly eat away at her brain. It got to the point where she was having strokes and she couldn't function properly. She couldn't speak clearly. Her eyesight was even worse, so I was leading her around, which is hard. She couldn't care for herself.

Loss of dignity is what I'm afraid of. But I have hope that I'll make it through. I've made it this far. When I was diagnosed, a nurse who was giving my parents a huge guilt trip said, "She'll be lucky if she makes it to her eighth birthday," because my parents weren't putting me on medication. And, if I've made it this far, who knows how far I will make it? In a perfect world I wouldn't let the virus beat me. It would be something else, something not so drawn out.

How did your family react to the attitude of people like that nurse? Did you think you only had a few years to live?

They didn't tell me about this as it happened. I'm just recently discovering my past. I was shielded from a lot of things so that I wouldn't have to worry about it. I remember when I was little and we'd go to the doctor for a checkup, and then they'd send us outside to play in the hall while my parents discussed options and what was going on with the doctors and nurses. Since I was shielded from it I couldn't have any reactions until now.

When did your parents stop shielding you and start telling you things as they happened?

It depends on what the specific issue was. I was told about T-cells, T8 and viral load pretty much as soon as my parents were, but the full realization of what those things meant, psychologically for me, would take a lot longer. Like the fact that I had no T-cells when I started medication. I think I realized six months after that, when I was healthy again, how bad that was to have no T-cells.

You moved around a lot as a kid. Have you always had good care, or have you encountered any problems?

For the most part I've had really good care. It was hard for a while, when I was living in Mendocino, in northern California, and we had to commute down to Oakland, which was about four hours away, to see my doctors. They were at the Children's Hospital there, the closest pediatric-HIV specialists. So, I would go to the family doctor in Mendocino for most things. She was definitely not a specialist in either pediatrics or HIV. I'm sure we gave her a run for her money there. But I've always had pretty good care.

Do you have a regular doctor now?

Yeah, I have a regular doctor at the Children's Hospital in Denver. He's really good. My nurse practitioner actually just left for another area, so I'm in transition getting another one. And we also have "The Specialists" -- a whole list of specialists. I was talking to my dad the other day and saying, [dreamy voice] "It would be so amazing to just be normal, and only have to get the usual checkup once a year, and have one doctor, and one dentist -- and that's it! And an optometrist, maybe." But, there's the whole list of them. My army.

So you're happy with all your doctors?

Yeah, they're amazing. They have great services for the family as a whole -- for infected and affected children and youth. The programs, medically, are wonderful, as are the support programs.

Have you ever had any major health complications or illnesses related to HIV?

I had mycobacterium avium complex (MAC) before I was diagnosed, but it was localized. It came out in the form of a tumor. They didn't really know what it was until just before they operated on it. I had a few lymph nodes removed. And, like I said, I've had pneumonia a few times. Those were the most serious things. I had pancreatitis, but that was due to the medications. I'm allergic to ddI. I also had neuropathy from the d4T.

Do you experience any side effects from your current medications?

No, the medications I'm on right now are working out wonderfully, aside from taking them at the wrong time or something like that. Sustiva is the only one I have side effects from at all. For a while they told me to take the Sustiva in the morning, because it wouldn't let me sleep at night. If I take it in the morning I get dizzy; if I take it at night I get "the dreams." I actually haven't had as much experience with the dreams as a lot of people have, though. I do get nausea sometimes, but I'm one of those people who gets nauseous if they take Advil on an empty stomach, so it's hard to say which medication causes that.