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Odd Girl Out

Living Positively After a HIV Diagnosis

By Bianca Smallwood

It’s a busy day, and Leanna Lui finally has some free time. She spent most of the day at work and now has a few moments to spare before attending a volunteer meeting with her best friend, Emi. A typical day for her, but things quickly got strange when the post office informed her she had to sign for a packet of certified mail.

 

   With the packet in her hand, she jumps back into her car. Without hesitation, she opens the packet to find a letter from the life insurance company. Glancing over the letter, her eyes stop when she comes across the bold words: declined, and HIV positive.

 

   “I just remember freaking out and not knowing what to do and what it all meant,” Lui says.

 

   Sitting in her car, alone and confused, the first person she called was her father. Although the conversation was brief, both were unsure of what was happening – and would happen – to her life.

 

   She asked her dad, “What does this mean? Is this for real? Could they have made a mistake?”

 

   No longer dominating the headlines, HIV still poses a significant threat to society. The number of new diagnoses has declined by 9 percent since the heydey of the outbreak, but among the estimated 1.2 million Americans living with the virus today, 13 percent do not know they are infected.

 

   Lui started to cry when she read the news and wondered how this diagnosis would affect her life. Would she no longer be able to touch the children she worked with as a social worker? What would her new boyfriend think? Would she ever be able to get married and have children?

“I just remember freaking out and not knowing what to do and what it all meant,” Lui says.

The public discussion on HIV/AIDS began one year after the first recognized AIDS case in the United States was discovered on April 24, 1980. Lawrence Mass, a journalist for the New York Native, became the first journalist in the world to write about the HIV/AIDS epidemic. Soon after Mass’ article was published, education projects and campaigns began spreading information on the epidemic through billboards and pamphlets.

 

   New organizations also formed during this time such as The Gay Men’s Health Crisis and the National Association of People with AIDS. The discussions during this time were so dominant and widespread that data released from the Gallup Organization showed that in 1985, 95 percent of Americans had heard of AIDS.

 

   By the 1990s, the U.S. government had spent $7.36 million developing a campaign called America Responds to AIDS which aired more than 59,000 times. Public awareness also boomed when Hall of Fame basketball player Magic Johnson announced that he was HIV positive, dramatically quitting the game mid-career over fears of spreading the virus during incidental contact on the court.

 

   Reflecting back, Lui says that she remembers her own misconceptions about HIV.

 

   “I had to think how does that affect me professionally because I was a social worker working with children and families,” she says. “I was like, ‘Should I be having one on ones, direct contact with other kids? Would other people be okay if I was positive, and I’d be touching their kids?’”

 

   After reading the letter, Lui continued to carry on  with her usual activities that day, attending the volunteer meeting with Emi. However, she immediately began to monitor her interactions with those closest to her, afraid to even hold Emi’s infant son.

 

   “She handed him to me, and I remember holding him at arm’s length," she said. "I just remember not being sure how to even hold the baby that I normally embrace without a second thought.”

 

   She also was frustrated. She did not fit into the “stereotypical” category of a person with HIV. She didn’t abuse drugs, never received a blood transfusion, was Asian American, and – more importantly – she was straight and female. How could it happen to her?

 

   Although millions of people in the U.S. are living with HIV, the fear that emerged during the 1980s HIV epidemic still persists today. Considered a death sentence, HIV/AIDS continues to be associated with homosexuality,

substance abuse and prostitution. Of the nearly 40,000 (39,513) people diagnosed with HIV in 2015, more than half (67 percent) were gay and bisexual men. Be that as it may, heterosexual contact accounted for 24 percent (9,339) of HIV diagnoses.

 

   Another popular misconception is about how HIV is 

transmitted. Myths continue to circulate that HIV is 

transmitted by touch, kissing or from the air, when it is only

passed if blood, semen vaginal or anal secretions and breast

milk get into a person’s bloodstream.

 

   HIV related stigma and discrimination are the main reasons why people are hesitant to get tested, disclose their status and take antiretroviral drugs, according to the World Health Organization. For this reason, more people are diagnosed late, potentially allowing the virus to progress to full-blown AIDS, consequently increasing the likelihood of transmitting HIV

to others.

 

   Education is a contributing factor to these false impressions. Lui never formally got tested for HIV because she thought during annual visits to her OB/GYN,  women were screened for the virus as they are any other type

of sexually transmitted disease. But she soon discovered, those tests are separate.

   Lui’s unawareness raises an important question: How many

other people think that STD testing includes all diseases? And,

could this be caused by a lack of proper sex education in schools?

   Teaching sex education in Hawaii is a topic that has faced many problems. Just last year, the Hawaii Department of Education presented a revised version of Pono Choices, a sexual health program, after it received criticism for its “controversial context.”

 

   Rep. Bob McDermott, an opponent of same sex marriage, moved to ban Pono Choices from being taught in Hawaii’s classrooms, and the program was suspended until the DOE made changes to its content.

 

   Although changes were made to the Pono Choices curriculum and a new policy (Sexual Health Education Policy 103.5) was created to provide students with more information on sexual health, reports show that there is still a lack of proper education about HIV.

   Only 44 percent of middle schoolers said that they were taught about HIV/AIDS in public school, an 85.7 decrease from 1999, according to the Hawaii Youth Risk Behavior Survey. Numbers also decreased for high school students from 85.7 percent in 1999 to 75.6 percent in the most recent tally.

"Would other people be okay if I was positive and I’d be touching their kids?" - Lui
"I just remember not being sure how to even hold the baby that I normally embrace without a second thought.” - Lui
“Let me go talk to your mother and find out what’s going on,” her father said. “I’ll let you know.”

Lui went to her family physician hoping the diagnosis was a mistake.

But the results came back the same. With a virus that America seems to have mitigated, but not cured, she worried about being rejected.

 

   Before her diagnoses, Lui attended the University of Hawaii at Manoa, where she earned a bachelor’s degree in Family Resources and later a master’s degree in Social Work. After graduating from UH in 2001, she began her career as a social worker and was involved in many local associations and volunteer groups.

 

   Despite all of her good deeds for the community, she ended up with a T-cell count below 200, when she was diagnosed with AIDS and referred to the Department of Health. Plus, while she could presume she contracted HIV from unprotected sex, she would never know when or who she contracted it from, since she never actively checked her status to learn when it happened.

 

   The Department of Health connected her to a local nonprofit organization, the Life Foundation, where she received a crash course on HIV and the significance of AIDS. She learned a lower T-cell count made her more vulnerable to illnesses. She also began working closely with the DOH to contact her former partners. They all were contacted except for one who she was told may have moved to the mainland.

 

   Lui started to understand the virus more but was still uncertain about her chances of maintaining a romantic relationship. During the time of her diagnosis, she was in a new relationship.

 

   “When I found out, he was away getting ready to deploy,” she says.

 

   Packing her suitcase to leave on a family trip to Russia, Lui wrote him a letter. Since the relationship was new, she gave him the option to stay in the relationship or leave without any judgment.

 

   Returning from Russia, she opened the front door of her apartment to find a surprise. A room filled with roses and candles. She and her boyfriend spoke that day and while he appeared to accept the situation, things eventually changed.

 

   “I can’t blame him, because at the time, you want to be supportive," she said, "and then you realize what are the realities that come with it and how it would affect everybody’s life.”

 

   Following her break up, Lui created a “List of Stupid Rules” (see right) to help her find her ideal partner. Frustrated by the complexities, at times, she began considering artificial insemination and becoming a single parent.

“When I found out, [my boyfriend] was away getting ready to deploy,” Lui says.
“I didn’t like him when I met him,” Lui says laughing.

Lui says that when she and Mike first met on her birthday in 2009, it was everything but a fairytale.

 

   “I didn’t like him when I met him,” Lui says laughing. “Didn’t like him.”

 

   Lui initially thought that Mike was interested in a mutual friend,

who constantly invited him to different social events. But when he

wouldn’t show up, Lui got upset and nicknamed him, Mike “The Flake” Moskal. But to her surprise, the invitations really were a part of a concocted plan for them to meet.

   A couple of days after finally meeting her, Mike asked Lui out on a date. After cooking her dinner at her home, he asked to kiss her. She said no, but Mike was persistent and to dissuade him, she disclosed her HIV status.

 

   Mike kissed her anyway.

 

   The two spent the rest of the evening talking about HIV, her List of Stupid Rules and more. After their date, Mike spent the rest of the evening researching HIV, concluding that he wanted to give the relationship a shot. Several months later, Mike proposed to Lui and they were married on January 18, 2009.

When Leanna Met Mike

Living Life Positively

Living Life Positively

Courtesy: LifeFoundationHawaii

“You don’t know whose out there, who might have it and who may be struggling with it…” she says. “They may not have the support of family and friends so it’s us, it’s all of us that can make that difference.”

It’s a Saturday afternoon, and Kapiolani Park is swarming with people. Among the crowd is Lui, taking a selfie with a friend. Her hair is braided into two pigtails, tied at the end with two Hello Kitty rubber bands. A sign with the words, “TEAM HOPE4US” is sticking out of a red wagon.

 

   Attending the Life Foundation’s annual Honolulu AIDS Walk for more than 10 years, Lui explains her HOPE4US label as standing for: “Helping Others Promote Education For Understanding and Support.”

 

   Now a mother of two, she says when her son Cameron started asking questions about her medication, she quickly decided that to be a good example for her children, she needed to share her story.

   Currently working as a court officer and independent beauty consultant, Lui continues to spread awareness on HIV/AIDS by speaking at schools, participating in public service announcements and other events sponsored by the Life Foundation.

   Although she will have HIV for the rest of her life, Lui says she will continue to live her life “positively” for her friends, family and the others who are HIV positive.

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