Photograph by Rory McNamara
Out in the Open: Gregori Hamby, his sister Becca Thompson and grandmother Shonda Ware are used to being upfront about Gregori's illness.
With new drug technologies extending lives, young people come of age with HIV
By Lois Pearlman
Julie Gutierrez has two secrets.
The first secret almost sent the 16-year-old to her grave. When she was five, her mother's boyfriend molested her. At 13, she tried to commit suicide. In the hospital, after Julie (not her real name) revealed the violation, doctors administered a battery of tests and discovered a new secret: she was HIV-positive, just like her mother.
Understanding how the unspoken secret had eaten away at her heart, she has shared this new secret with her closest friends, but most of her classmates at her Sonoma County high school haven't a clue. It's a trade-off, she says, keeping her HIV status from many of the people she knows. It creates a kind of barrier, but it also protects her from the pain of rejection.
"I try not to think about it a lot," Julie says. "There's something you're hiding. But everyone has something. Everyone has a secret, but they don't say it because they think they're the only ones."
Small, serious and intense, with dark eyes that flash their fire when she smiles, Julie shows no outward signs of the human immunodeficiency virus (HIV) that could take her life. She has long, dark hair and the lithe figure of a healthy young woman. It would not be an exaggeration to call her beautiful.
Originally from Guatemala, she has lived in the United States for nine years and speaks fluent, unaccented English. Julie loves to write, especially poetry.
"Everybody tells me it's poetry, but I don't see how it's poetry; it's just something in my head," she says, managing to sound both modest and proud.
She dreams of attending college in Italy after graduation, then obtaining her MFCC license and working as a therapist. She knows how effectively counseling can change a person's life for the better. Julie also wants to raise a family, although after watching her mother struggle with the symptoms of HIV/AIDS, she worries about how her children would fare if she grew ill.
"I have fears if I get sick, they won't have anyone to live with," Julie says.
These are common dreams and common fears for this first generation of young people growing up with HIV and AIDS, according Geri Brooks, founder and director of Sunburst Projects in Rohnert Park, an organization that works with children who have HIV or AIDS and their families.
Growing up with HIV is like sailing to uncharted territory, and these teenagers and young adults are the unwitting pioneers. When HIV was first identified in 1983, children who were born with the disease or who contracted it early in life usually died within a few years. It wasn't until children had access to the new antiviral drugs nearly a decade ago that a full life span for these youngest patients became a genuine possibility.
And like any explorers who discover, midvoyage, that they are headed for an unexpected destination, these teens and young adults are confused, unprepared and afraid. Add in the fact that most of them come from disadvantaged backgrounds, and it is no surprise that they face enormous challenges and need extraordinary support to live anything resembling a normal life.
Having HIV makes everything about being a teenager even harder, says Peggy Macy, a social worker in the Pediatric HIV/AIDS Program at the Oakland Children's Hospital.
"A lot of them have learning problems, attention deficit disorder or cognitive problems. It's harder for them to use verbal skills. At least half of them have low self-esteem. They have a hard time being assertive in relationships. They have depression or anxiety. Some are afraid of entering into the whole fray of dating and relationship. Some have been sexually abused. They're wondering how long they're going to live. They have seen other friends die in their 20s. They struggle to have hope in the future, not just go for the short term. Some carry a lot of anger about how they got infected."
And most difficult of all, as they learn to navigate the uncertainties of teenage social life, they carry the extra pressure each time they form a new relationship of deciding whether or not to say they have HIV.
"Disclosure is huge," Macy says, "whether it's to a friend or a partner. There is still so much stigma attached to this disease, or it wouldn't be true. How do they have intimacy with someone from whom they are hiding a very important piece of themselves? What about the energy it takes to keep that separate?"
Like Julie, many teens with HIV are afraid to share their status with anyone but a few of their closest friends. But others believe openness will make their lives easier in the long run. Richard Powell, an HIV-infected 18-year-old senior at Santa Rosa High School, gives talks at schools in Santa Rosa and Petaluma. He didn't hesitate to tell his former girlfriend about his HIV status, although the disclosure put an end to their relationship.
"Her parents were afraid," he says. "She understood, but she was afraid she would get it. She didn't have a lot of education [about HIV]. I felt really bad for a while, but I figured it was her choice and I wanted her to be happy."
Richard admits to being shy around new people. He is a vulnerable-looking young man, with hesitation in his warm brown eyes and a habit of responding politely but minimally to every question. He was born HIV-negative to an infected mother and then contracted the virus from a scalpel wound during delivery. His mother died a year ago, and Richard lives with his father in a west Santa Rosa neighborhood.
A special-education student, this is his fifth year of high school, and he hopes to graduate. Animals are his passion, and his dreams for a future center around a career in veterinary medicine. He spends a lot of time reading about animals, especially dogs, and his knowledge in this area is broad and deep.
"I like to learn about things, mostly about animals," he says. "It's more of a challenge working with animals. People can tell you what's wrong with them, but animals can't."
Like Julie, and many other young people with HIV, he looks forward to marrying and raising a family. "I have normal values like everyone else," he says.
Myths and Fear
Forestville school bus driver Shonda Ware is also a big advocate of being up front about HIV. Her eldest daughter, Lisa, and 13-year-old grandson, Gregori, are both infected with HIV, and all three of them speak about the disease at local schools.
"Secrets have a way of coming out, so we are very open," Ware says. "If [Gregori] is going to have an overnight at a friend's house, everything has to be explained to them. I always think it's better to have it out in the open than to have it come back to haunt you. That's one thing I have taught my kids; if you're willing to take a stand on something, do it all the way."
But Ware admits their willingness to disclose leaves them vulnerable to other people's ignorant attitudes, such as those of the family down the block who refuse to let Gregori play with their child.
"We've had bad reactions. It's still out there. Even though it's not the disease of the moment, people are still reacting to it like they don't know what it is."
Still, Ware's up-beat attitude--and her devoted family--helps her make it through the long, hard days of caring for a teen who frequently needs medical attention.
Gregori was born with HIV and contracted encephalitis when he was eight months old. The illness left him with scars on his brain that cause seizures about twice a month, neuropathy in his feet and developmental delays both mental and physical. The anti-AIDS drug AZT has dyed his retinas, so he has night blindness. He is about the size of a nine-year-old and reads at a first-grade level.
"He will eventually be able to find work. It would have to be repetitive. He is very mechanically inclined," Ware says. "But we never know what skills or memories he is going to lose in a seizure."
Gregori takes 14 and a half pills every morning and 13 at night. Ware lays out the morning dosage before she leaves at 5:30am for her job with the Santa Rosa School District, and her husband, Wes, administers them to Gregori before the boy goes to school.
Fortunately, Ware says, Gregori is still at a stage in his life where he looks upon the drugs as a lifeline rather than something that make him feel like a freak. Unfortunately, that is not true for many teens with HIV, according to Brooks.
"When they become adolescents, it's very hard to make them take their medicines, especially if they are feeling healthy," she says. "They want to separate from a childhood associated with taking medicine. The side effects of the medications can be really devastating. Nobody wants to feel lousy, especially young people. They want to feel vibrant."
Some of the young people Brooks works with at Sunburst Projects secretly stop taking their daily dosages of antiviral drugs and are all right for three or four years. Instead of taking the pills, they might flush them down the toilet or hide them in pillowcases.
But unmonitored cessation can make them once again vulnerable to opportunistic diseases, and if they decide to go back on the antiviral drugs, it can be difficult to find the right combination to keep them healthy.
As a result, several young adults with HIV--former Sunburst clients--died this year.
Death is the enemy for young people with HIV, teens who, without the virus, would be counting on having most of their lives still ahead of them. Staying alive means being here for the "cure," or at least the new advances that promise to make HIV a non-life-threatening condition in the future.
The heroes in this drama are the antiviral drugs that have kept these youngsters alive long past the expectations anyone had for them 10 years ago. These drugs work by lowering the patient's "viral load" and slowing down the progress of the disease. This requires combining several different types of antivirals in order to get around the virus' tendency to mutate in the body and develop drug-resistant strains.
"We are learning more how to use [the drugs], how to combine them, how to choose medications that will work for an individual lifestyle. We have so much more flexibility now," says Kirsten Balano, the head of the pharmacy at Sonoma County's HIV clinic.
Balano says the drug companies are learning to combine several drugs into a single daily dose, instead of the dozens of pills that some HIV patients take twice a day. The new formulations, she says, can't guarantee young HIV patients a full lifetime, but they hold out the promise of one.
They also offer another blessing that young HIV-ers have at the top of their wish list: the strong possibility of having children who are HIV-free.
"There is data going back to 1995 that the use of antiviral therapy can significantly reduce mother-to-child transmission," she says.
Father-to-child transmission is not even a possibility, because babies develop HIV in the womb, at birth or through nursing; HIV-positive fathers can, of course, transmit the virus to the mother.
But new developments are taking place every day, and it may soon be possible, with the use of antiviral medications, for HIV-positive men to have families without infecting anybody.
"I would not discourage them in wanting that for themselves," Balano says.
It's a bittersweet dilemma. Youngsters infected with HIV in childhood are coming of age, experiencing the normal desires for relationship and family, acting on them and wondering what comes next.
Says Sunburst Projects director Brooks, "I think they grew up thinking they were going to die. They know they're alive because of the drugs. A lot of them have a dual diagnosis. They have been in foster care. Many come from disenfranchised homes. They need life skills, support to help them live in society as healthy adults. They need to learn how to get jobs, to express their feelings and communicate their needs when they are seeking work. We have to become much more sophisticated in our program, much more directed. We need to translate the tools into real life. This is the challenge for us. We're learning from them like we did back in 1987."
Accordingly, Sunburst, which now has a second office in Sacramento, is changing its focus. It is no longer just a place to find support in coping with illness and death as it was in the early days of the epidemic. Now, during the weekly support groups and the yearly summer camp sessions, Sunburst is providing its young clients with job training, leadership programs, volunteer experience and relationship-skills workshops.
One day these young people may be able to look back and wonder why HIV was such a frightening and isolating disease. Some of them have already decided that living a good life is more important than worrying about the effects of their disease.
"If you ever come across a person with HIV, treat them like a normal person. We're all the same. We just have to take care of ourselves in different ways," Richard says.
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