A Monster Lives in Her Blood
By Natasha Thakkar
‘His name is Hivvy.’ Alora Gale, now a social services major at Colorado University, told the story with poise and grace, as it had been told to her a million times before by her mother. ‘She had this dream one night about a monster, and woke up realizing that it would be the perfect way to educate me and my brother, Mo, about the disease. It went 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.’
Listening to her, you can tell that Alora misses her mother dearly. ‘Losing my mom was really hard, but the hardest part was realizing that the disease which killed her was also in my body.’
Alora Gale and her brother, Morgan, were told they were HIV-positive on their mother’s birthday, March 17, 1992. Alora was six at the time and her brother Mo was not much younger. It is believed that her mother Linda Brosario contracted the disease through unsafe sex before marrying Gary Gale, Alora’s father.
Doctors say that both Alora and Mo were infected while in the womb. Linda found out she was positive after she married Gary and Alora and Mo were born. She and a group of friends, after discussing an article about AIDS, decided it would be a good idea to get tested. Linda’s test came back positive. She immediately had Gary and her children tested as well.
Alora’s father was the only one whose test was negative. ‘Women are eight times more likely than men to become HIV positive, but no one is sure exactly why my father tested negative,’ Alora said. ‘It is believed that some people have a resistant gene against certain strains of the virus, and he may have that resistant gene.’
Gary now runs the National Pediatric AIDS Network, a foundation he started in memory of his wife who died when Alora was 10, just four years after her diagnosis. As a single father of two teenagers living with HIV, Gary realizes how amazing it is that both his kids have reached their teenage years. Though it is hard, he has hope. You can hear in his voice a strong, loving father who would fight the monsters under the bed and in the closet just so his children could sleep peacefully at night.
However, against this monster, he is weak.
‘When I thought my kids were going to die, I tried to make every birthday, every holiday, every minute of their lives special,’ Gary said. ‘But now that they are teenagers, I am more careful. I don’t want to do the things early on that I thought were necessary to make them into rotten adults.’
Alora was part of the first generation of children born with HIV to reach adolescence. According to data from the Centers for Disease Control and Prevention, before the mid 1990s, children with HIV lived to an average age of nine. Now, thanks to breakthroughs in antiretroviral medication since 1996, the average age has risen to between 13 and 15 and continues to rise.
Though medical advancement has made it easier for Alora to grow up, she has had her share of problems.
‘It was a lot harder when I was younger because HIV and AIDS, even now, is a relatively new disease and back then, in the 1990s, they were still experimenting with drug dosage and how to deal with the side effects,’ Alora said.
At 12, Alora was instructed by her doctors to take dosages of medications strong enough for a 200-pound male.
Not only did her doctors know less about the disease at that time, her peers didn’t know much either. At age seven, Alora met a girl named Destiny at school.
‘She was a year older than me; I was in second grade. Whenever I’d go out onto the playground, she would call me ‘AIDS Girl’ and tell everyone not to go near me,’ Alora said. ‘She believed that if I coughed or breathed, or even went near anybody, that they would get AIDS too. One day I just couldn’t take it anymore and my best friend, Morgan, and I decided to teach Destiny a lesson.’
Alora laughed as she remembered how she ‘fake-sneezed’ on her best friend Morgan, who then started spazzing and wiggling on the ground dramatically.
‘Destiny literally flew across the playground, screaming, ‘Oh my god Alora killed her, Alora killed her!’ and yanked the playground supervisor over. By that time, Morgan had stood up and we were laughing so hard!’ Alora said. ‘The supervisor later explained to her that if I sneeze or breathe on her that she wouldn’t get HIV.’
This is why Alora has chosen to publicly speak about HIV and AIDS. She knows that there always will be people like Destiny out there.
‘They say ignorance is bliss, but I believe the exact opposite,’ Alora said. ‘I’m more of a knowledge-is-power kind of person.’
Alora practices this belief actively and has been speaking about the disease since she was 13 years old.
‘Speaking out has been a rewarding experience for me,’ Alora said. ‘Not only is it a kind of healing process, but the feedback I’ve gotten, for the most part, is amazing.’
However, being public about the disease has its positives and negatives.
Alora attended high school in Mendocino, Calif. and describes her school years as normal for the most part. She says that people talked less and less about it as she got older, going from elementary to middle to high school.
‘It became more of a gossip thing, like everyone knew, no one confronted you about it,’ Alora said. ‘Before, like in elementary and middle school, people were very much ‘in your face’ about it. As I got older, it became more underhanded, but you knew that people still knew. When I was introduced to people through common friends, it was like, ‘She was the girl I was telling you about.”
Alora dealt with the peer pressure with grace, and had a pretty normal high school social life. She describes it as ‘normal, but adding an extra layer to everything.’ She went to her high school dances, had her first kiss at 14 and walked at graduation.
She admits that she was always very cautious, ‘Dances were always a little scary. It’s like, ‘OK, I am going to homecoming but I just started new meds and I have been throwing up for the past three days. I really hope I last through the night.”
The AIDS virus is a retrovirus, meaning that it constantly changes. Because of this, Alora and her brother are always starting a new set of medications to keep up with the evolving virus. Being on a cocktail of medications that constantly changes, Alora often fell ill. Her proudest achievement in high school was graduating on time, because it nearly didn’t happen. Taking off so many days due to the side effects of her various medications almost prevented her from walking. She had to take three quarters worth of work in one quarter just to graduate on time.
‘I really wanted to graduate on time as a tribute to my mother. All my mother wanted was to see me graduate from high school,’ Alora said. ‘Unfortunately she didn’t make it to that point.’
Now in college at the University of Colorado in Boulder, Alora says that her friends have never been more supportive.
‘Just the other day, my friend asked me if I wanted to go see a movie and I couldn’t because I had a really bad fever,’ Alora said. ‘A couple of hours later he surprised me by showing up at my apartment with some chicken noodle soup and a box of tissues.’
Alora says that it is friends like these that make dealing with the disease easier.
‘I have been blessed to have such a great support system; it is because of the way I have been received that I continue to speak publicly about my condition,’ Alora said. ‘My brother, on the other hand, chose not to.’
Alora’s brother, Morgan, is now 18 years old and has chosen not to speak about his AIDS virus openly. Alora says he used to, but faced a lot of social pressure and teasing and therefore decided to stop.
‘Mo and I are complete opposites,’ Alora said. ‘He’s tall and skinny with blue eyes and I am short and more athletically built. Even our approach to this disease is completely different. We take different medications and react very differently to them; I have the more common side effects (nausea and vomiting), while he has the more radical ones.’
Morgan is part of the two percent of the HIV population that has a hypersensitive reaction to Ziagen, a popular medication used to treat HIV. The side effects of this medication are potentially fatal. He also had pancreatitis and seizures from all the medications he has taken to treat the disease.
It is interesting how differently a society will perceive a male and a female that close in age and with the same disease. The Gales have always been open about living with HIV and before placing Morgan in a private elementary school, they held what Alora calls a ‘town meeting’ to let all the parents know that their children will not contract HIV from Morgan with casual contact.
After this ‘town meeting,’ parents began pulling their kids from the private school in fear and placed them in public schools instead. Since then, the private school shut down and has not reopened. Alora says that Morgan faced a lot more torment growing up with the disease than she did and fully supports him in his decision not to speak about it. In her opinion, it is the ‘male machismo’ image society has built up that makes it harder for him to deal with the disease than it has been for her.
When asked about dating, Alora was quick to say, ‘Being public isn’t in your favor when dating.’ Taking a brief moment to laugh, she continued, ‘In my last relationship, it definitely played a part. He wasn’t very comfortable with the fact that I was very open with it. He had a hard time telling people we were dating, concerned with the way others would perceive him.’
Alora admits that it is easier to date people who are more open to it and even easier to be with others who are positive.
‘I tend to date those I have met through my conferences because then I don’t have to have a serious discussion about my condition,’ Alora said. ‘I couldn’t imagine having to sit someone down and have that life-altering discussion with them. Obviously, the easiest thing to do would to just be with someone who is ‘positive’ as well. However, you can’t help who you fall in love with.’
Though her battle with Hivvy is far from over, Alora has learned how to make peace with the monster. She chooses to deal with the disease with humor, remembering past anecdotes and creating new ones.
‘I try to treat it with humor,’ Alora said. ‘If you can’t laugh, what can you do?’
She insists that she has the same life as any teenager, ‘except AIDS is part of it’ and she lives her life adhering to that belief. Since her diagnosis, Alora has looked for the good in ever situation. She advises other young HIV positive people to do the same.
‘Hang in there,’ Alora said. ‘It really does depend on the person, but definitely hang in there. Look for the silver lining to the dark cloud