Photo courtesy of Gary Gale
Alora standing in front of the Capitol in Washington, D.C., where she attended Voices 2001: The National Conference on HIV/AIDS and Children, Youth & Families. The conference, organized by the non-profit AIDS Alliance for Children, Youth and Families, seeks to use education, training and advocacy to help improve the lives of youths, women and families that have been impacted by HIV.
Have you met other positive young people in Colorado?
In Boulder there are only a few young people who are known to be positive at the local AIDS project. 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.
Do you participate in an organized support group?
Our clinic has a wonderful family program. My family has gone on their family retreat several times. All the families just go away for a weekend, and talk, and bond and share stories -- whatever they feel comfortable with.
I don't currently participate in any of the organized support groups, but I do keep in touch with people I have met in the HIV community. I find I still keep in close contact with a number of people I met working at Camp Heartland. Just having someone to vent to is so valuable. [Having] someone who can honestly say they understand and have been there is a blessing beyond belief.
Have you started dating?
Yes. I've had several 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.
About a year ago I broke up with my boyfriend of a couple of years. HIV was probably a large part of the reason we ended things. He was very supportive of me, even coming to doctor appointments. He was very uncomfortable with the way we were viewed as a couple however. He was concerned with people finding out he was dating someone who was so publicly HIV positive. That really wasn't going to work for me. I have dated casually since then, but I am currently single.
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.
I understand that you started college, but decided you needed to take a break. What are your plans now?
I hope to go back to school at some point in the future. I am looking into online and correspondence courses. Currently, I am working in a great restaurant in Boulder, getting back into the HIV community and enjoying life.
I am spending time doing things I have been putting off, such as learning to play guitar, playing in the darkroom and learning to sew. I plan on moving back out to California at some point this summer to re-establish residency and spend time near the ocean.
Do you have a regular doctor now?
Photo courtesy of Gary Gale
Alora and her brother Morgan during Christmas, 1993.
Yeah, I have a regular doctor at the Children's Hospital in Denver. He's really good. 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?
Yes, 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.
Have you had any health problems in the last few years?
The only major health care incident I've experienced in the past few years involved a car accident. I was driving with some friends one summer afternoon and was side swiped by a semi truck. We were blessed that we all made it out alive, considering we were hit at 75 miles an hour. The two kids in the back were able to walk out of the car, but my front passenger and I were stuck inside for some time while we were cut out. As a result of being together in a major accident, there was concern over my HIV status. My dear friend who was trapped in the car with me took prophylactic medications to avoid HIV infection. In the end, everyone who started out HIV negative remained negative.
As for my HIV care, I have been on an extended drug holiday for several years. I am currently battling with the dilemma of feeling like I am sick and dying while on my meds, and feeling great when I am off them. I know logically that I need to be on the meds, but I feel so much better when I'm off them. As a result, my T-cell count is lower than it once was. I am about to start a new regimen, complete with new medications and some old favorites. The upside is I know what side effects to expect. Jaundice, nausea, elevated bilirubin levels and fatigue are on their way!
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