IN MANY RESPECTS, 21-year-old Alora Gale has grown up in what she calls an "average, middle-class, Caucasian family." She was born in San Diego, but she and her now 19-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. Today, Alora and her family live in Boulder, Colo.
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 6 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.
In 1992, when Alora was 6 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 almost 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, 6, at her mother's 43rd birthday, also the day on which Alora and her brother Morgan (left) were diagnosed with HIV. Their mother had been diagnosed two weeks earlier, after she was tested with a group of friends. The Gales had no reason in the world to suspect their family could have been exposed to HIV. Up to this point they had been, in their words, an "average, middle-class, Caucasian family." Alora's mother passed away almost four years after this picture was taken, in November 1995 -- just before the advent of effective AIDS medications. Alora and her brother Mo are still going strong.
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.
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 resistance gene against certain strains of the virus, and that he might have the resistance 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?
Alora and her father, Gary, in 2000.
At that point, I was 6 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. When I was told I was HIV positive, 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.
Alora at the Ryan White National Youth Conference in February 2001, with Gadfrey and Natal (two speakers from South Africa) as well as her brother, Mo. Alora was a keynote speaker at the conference. The Ryan White National Youth Conference is the largest of its kind in the United States. Many young people living with HIV, like Alora, meet their counterparts from all over the country and the world at this conference. They often keep in touch through e-mail, letters and meetings along the HIV conference circuit.
Can you tell me a bit about your little brother? Have you and your brother both been open about being positive?
My brother's gone through different phases, as have I. He's gone from telling pretty much anyone, to saying, "Don't tell anyone without letting me know first or asking my permission."
We've been open about it since we were diagnosed. Family, friends, peers -- everyone knows. A lot of people know. I mean, I don't walk up to people and go, "Hi, my name is Alora, I have AIDS." But once I get them in sort of a comfort zone, I tell them. I do this once they know a little bit about me. I don't want to get too attached before I tell them. This way, if they don't like what they hear, they might walk away, and it won't be too hard if I'm not attached.
HIV is, and always will be, a large part of my life. At times I am more private about my status than others. It depends on my comfort level of my surroundings. I am public in Boulder; while I am living here it is easier to be public than private. I have trouble determining when and in what manner to disclose my status. In this situation it is infinitely easier to assume my HIV status is common knowledge.
Do you feel that because you're a woman you might get different reactions from people when you disclose your status than HIV-positive men do?
I think that the reactions people have can be very different, as well as the health care side. For example, a lot of the clinical trials are designed to be done on men. I'm 5'2". I'm not a very big person. But in clinical trials I get adult doses -- the same amount of, say, Sustiva that a 200-pound man would take. So I notice that kind of difference. In terms of perceptions, when I tell people that I am HIV positive, I think as a woman people assume I must have gotten it through sex. Even when I was in seventh grade I had people thinking that I got it through sex -- I doubt sex was even entering my mind at that point. If a guy had said that he was HIV positive in seventh grade, it probably wouldn't have been perceived the same way -- people might assume it was from hemophilia or something. I know some friends who got AIDS through blood transfusions. One of them, he's 21, often gets asked if he's gay. He's like, "I wasn't having sex way back then." I think it's interesting, the perceptions people have based on gender, or age, anything.
Alora in 1990, at 4½ years old.
Have you had experiences where people you told had a negative reaction?
Of course. Especially when I was younger, when there wasn't any information out there -- or not as much of it anyways. When I speak to students about HIV/AIDS, I tell this story about a girl in grade school. Her name, ironically, was Destiny. She was a year older than me; I was in second grade so I was about seven. Whenever I'd go out onto the playground she'd call me "AIDS Girl" and tell everyone not to go near me. She said that if I sneezed, or coughed, or breathed, or even went near anybody, that they'd get AIDS and fall over and die. She made that year pretty much a living hell out on the playground.
One day [laughter] -- being the 7-year-old drama queen that I was -- I had a friend, Morgan, who I pulled aside and said, "Okay, I just can't take it anymore. Here's what we're going to do -- I'm going to pretend to sneeze on you, and you're going to wiggle around in the wood chips and die, okay?" And so Morgan and I carried out this little play, and Destiny went screaming to the playground attendant telling her that I had killed Morgan with my sneeze. So the playground attendant came over, and Morgan was standing up and she was fine. Eventually a teacher had to sit Destiny down and say, "Look, if she sneezes on you, or breathes on you, or gives you a hug or even kisses you, you're not going to get HIV. And when people do get HIV, they don't just fall over and die." That's what Destiny needed. There are always ignorant people. One of the reasons I speak publicly is because, you know, they say ignorance is bliss, but I believe the exact opposite. I'm more of a knowledge-is-power kind of person.
Have you always dealt with negative reactions like that in a humorous way?
I try to treat it with humor. If you can't laugh, what can you do? That's my philosophy. For every dark cloud there's a silver lining; you just have to find it. That's pretty much how I treat it. I, luckily, have not had too many negative experiences. I've lived in areas of the country that were pretty well-educated, and if they weren't, I would educate them. It was always interesting to watch the kids educating the parents.
Can you tell me a little more about the speaking that you do? When did you start doing that?
I began public speaking when I was about 14. I spoke to the eighth grade, and then the sixth grade. I was openly HIV positive at my school, so I could tell them a little more about my story and give them a better understanding. At that point they were only spending one eighth of one day on HIV in the health class. I thought that was absolutely ridiculous. Fifty percent of new infections occur in people ages 13 to 24, and they only spend an eighth of a day. Or you get the AIDS education in your junior or senior year of high school, which for a lot of people is just too late. So I decided to speak publicly to help provide more education. I go to schools, in classrooms and at school assemblies, youth groups, churches, conferences -- a little bit of everything. I share my story and do HIV 101, things like that. I had the opportunity to speak at the Ryan White Conference [the Ryan White National Youth Conference, which aims to further HIV prevention and education among youths] in 2000 and 2001.
I stopped [speaking publicly] for awhile due to burn out. I wanted a chance at a "typical" high school experience. After this break, I find myself re-energized and ready to take on the world!
Has that been a rewarding experience for you?
Immensely. Not only is it kind of a healing process, but the feedback I've gotten from people has been amazing. When people say that I've actually made a difference in their lives it means so much; it's hard to put into words. Some people have come up to me and said, "Oh, I've had an aunt or an uncle who died of AIDS and to hear you speak has meant a lot to me." Other people have come up and said, "I'm positive, and it was great to hear you speak because I can't speak for myself. I don't feel comfortable." So, it's extremely rewarding.
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?
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!
Morgan and Alora with their mother, Linda Brosio, in the spring of 1992. This picture was taken as they were conducting a welcoming ceremony for Alora's father Gary, who had just returned from the first National Alternative Medicine Conference in Washington, D.C. After his wife and children were diagnosed with HIV, Gary founded the National Pediatric AIDS Network, a resource for information on children and adolescents with HIV/AIDS.
Has paying for medications been a financial problem, or do you have good insurance?
We have had pretty good insurance. My grandmother has helped us out with some of the alternative things we've tried that the insurance obviously doesn't cover. So she helps out there. But the money isn't so much an issue for us as I know it is for a lot of people. We got insurance shortly before we were diagnosed. When we switched from California to Colorado we couldn't take the physical, because we wouldn't have passed and that would have boosted it up to another level. But we still have pretty decent insurance. It pays for so much. Of course, we've still had problems with it.
My little brother Mo was very small. At 13 he was only 4'8" and weighed 76 pounds -- we were very proud when he finally hit 76. He has grown so much in the past couple of years since they've been giving him growth hormones. He injected his hormone every night -- it's about the same size as an insulin shot. That costs about $30,000 a year. That was a fight with the insurance coverage: They weren't convinced that he really needed it. They thought it was just for cosmetic reasons, even though his body age was about two-and-a-half years less than his actual age. But they did eventually start covering it.
Unfortunately, I am nearing the point at which I will lose my father's coverage. I am trying to avoid the anxiety of finding other means of coverage.
When you were taking HIV medications, how did you keep track of what you needed to take? Did you have trouble with adherence?
Well, you know, let's say I went to spend the night with friends and I forget my meds -- there's one missed dose, possibly two. That's always an issue. My brother and I became pretty good about it, especially when dad sets them out. When we were younger, my brother and I were very fond of stuffing the HIV meds under the couch cushions. But, the realization came that the pills did actually work, and that they were really expensive, so we decided that it was a little bit more sensible to actually take them. But, it was still hard just because, even though we only had to take them twice a day, it was still difficult to take them at the exact right times, all the time.
You talked about having to remember your meds when you stayed at your friend's house. How did your high school friends react? Did they understand what the meds are for?
Alora not long after she was born on Dec. 16, 1985.
Yes, they were amazing. I feel so blessed to have had friends like them. They not only have been such an amazing support, but they also have asked to be educated, and have educated themselves so much. They completely understand a lot of it, some on more scientific terms than even I do. They understand what the meds are for, and what they do, and they're always asking questions, which is wonderful, I think.
Aside from taking your medication, what have you done to take care of your health?
Well, I used to do more than I do now, because my T-cell count was so low. I didn't eat shellfish for most of my life, or peanut butter, or anything with peanuts in it. My parents were health-food nuts even before we were diagnosed, so I was pretty old before I had my first Snickers bar -- I was probably in second or third grade, which, you know, a lot of kids think, "Oh, wow, you poor, deprived child!" But that's just how I was raised. I eat pretty healthy -- I try to anyways. I try to make sure I don't get too much sugar, make sure the vegetables are washed, and no raw egg -- I don't eat raw fish, sushi, things like that.
What is it about things like shellfish and peanuts?
My parents were worried about food poisoning. What might have been a mild case for a normal person could have potentially killed me when I had no T cells. I'm not too sure about the peanuts. I believe there's an oil or a bacteria in peanuts that some people are allergic to.
If you had the opportunity to speak with a young person who just found out they were positive, what would you say?
Hang in there! It's a long road but you'll make it, hopefully. It's hard to say. It really does depend on the person, but definitely hang in there. Look for the silver lining to the dark cloud -- it will hopefully show up sooner or later.
|ALORA'S POST-DIAGNOSIS MEDICAL HISTORY|
|CD4+ Count (Jan. 2002): 750|
|Viral Load (Jan. 2002): undetectable|
|Medications, Side Effects and Illnesses (chronologically)||Jan. 1988: diagnosed with non-PCP pneumonia|
|Feb. 1990: diagnosed with non-PCP pneumonia|
|Feb. 1992: diagnosed with mycobacterium avium complex infection in cervical lymph nodes|
|Sept. 1992: started Bactrim (antibiotic)|
|Dec. 1994: diagnosed with non-PCP pneumonia|
|Jan. 1996: started Biaxin (antibiotic), AZT (zidovudine, Retrovir), 3TC (lamivudine, Epivir)|
|1997: tried psychic healing*|
|May 1997: stopped Bactrim, AZT, 3TC|
|Jan. 1999: restarted Bactrim, started ddI (didanosine, Videx), d4T (stavudine, Zerit), Sustiva (efavirenz, Stocrin)|
|Jan. 1999: Sustiva causes balance, dream problems; eventually subsides|
|April 1999: d4T's interaction with ddI causes neuropathy, pancreatitis|
|May 1999: stopped ddI, started abacavir (Ziagen)|
|Oct. 1999: stopped d4T, started Viracept (nelfinavir)|
|Dec. 1999: stopped Biaxin, Bactrim|
|March 2000: started occasionally taking Albuterol, Flovent (for asthma)|
|Aug. 2001: started taking Allegra (for allergies)|
|Aug. 2001 - current: Alora was on a structured treatment interruption for a few years and is soon to start medications again|
|More on Alternative Meds/Supplements|
|Supplements taken: acidophilus, astralagus (immune-enhancing herb), beta carotene, CoQ10, echinacea, egg lipids, flax oil, garlic, ganoderma (immune enhancer, stress reducer, tonic and sedative), multivitamins, NAC, vitamin C, vitamin E, rutin (flavinoid), St. John's wort.|
|* During 1997, Alora tried psychic healing; no physical contact was involved in the therapy. Her father says the aim was to "clear HIV from the body and improve immune functions." During this time, Alora was still taking Biaxin and (for a little while) Bactrim.|
Alora Gale can be reached via e-mail at email@example.com.
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