DECEMBER 2015

All progress in HIV/AIDS research is worthless if people are not informed.

DECEMBER 2015 Volume 8 Issue 5

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5 feature topic 2016: The End of AIDS? 8 Mike Hartley Good Fortune 14 BRAD LUM

Chanting Through Stormy Days

20 Leanna lui

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Exceptional

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2016: THE End of AIDS? By: mickey weems

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Photos: theartofphoto

Happy World AIDS Day! And we do mean happy. So much good news from HIV/AIDS research is out there nowadays. A recent study by Kaiser Permanente indicates that proper use of Truvada as a pre-exposure prophylaxis (PrEP) eliminates the chance of becoming HIVpositive. In addition, there is a once-a-month injection in the works among several other promising treatments.

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As good as this news may be, the end of AIDS is not yet in sight. The figures concerning 0% of participants getting HIV from the Kaiser Permanente study are based on people who scrupulously took the medication once a day. Not everyone will do so â&#x20AC;&#x201C; people forget or may be guilted into believing that Truvada is a party drug or a sign of infidelity in a relationship between two HIV-negative men. Or there may be medical reasons why some people cannot take the drug. There is also the chance that a Truvada-resistant strain of HIV may show up â&#x20AC;&#x201C; as our treatments evolve, so does the virus.

If the best means for prevention is an injection, it will not eliminate HIV because not everyone will use it.

Gay men in particular might hit the needle for steroids to gain muscle, but will balk if it is simply to prevent something rather than give observable results, even if that something is HIV/AIDS. With that in mind, there is still hope for something that could make a world of difference: The end of AIDS stigma. Most likely, HIV will be with us for a while. But with education and treatment, stigma could be reduced to the point where people in the HIV/AIDS community are treated like people overcoming any of the myriad diseases that afflict humankind.

This issue is dedicated to those of us who are HIV-positive. Some are like Brad Lum who was hit with cancer as

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well as HIV, but encountered a spiritual force that saw him through. Others don’t match the stereotypes, such as Leanna Lui, who also faced the challenge of finding a good man and having children, two things she figured might not happen after she tested positive. If anyone knows what it’s like to feel isolated due to HIV, it’s her. Then we have those such as Pono. She is a nurse who is out and proud as mahu and positive, but has to keep her identity secret in this issue because revealing it could hurt those she tries to help. Finally, we have Mike Hartley, a former Southern Baptist preacher who bounced back by not only achieving success in real estate, but by giving back to the LGBT community.

Because the stigma still exists, all four stand to lose something by appearing in this issue.

But because they are willing to speak up, they reduce that stigma for everyone. Their stories may reveal paths for others to follow.

A thread runs through these articles. All four talked about kindness extended to them as they tried to cope with such a life-changing situation. All of them agree that they could not have made it through the fire on their own.

And all of them extend their aloha to the world around them as they help others go through the medical, social, and spiritual challenges of living with HIV. It is 2015. Four years ago, actor Charlie Sheen became HIV-positive. He claims he shelled out 10 million dollars in hush money to blackmailers. He could have taken away their power by coming out and, as a consequence, reduced the burden of stigma he was carrying with him every minute since he found out. The bribes he paid did nothing but compound his anxiety – once you try to quiet somebody with money, there is nothing keeping them from coming

back for more.

So, Happy World AIDS Day, Leanna, Brad, Pono, and Mike. May you have many more.

And as for you, Charlie, you could learn from these four about how compassion for others is priceless in treating what really ails you.

Beats blowing 10 million on scam artists.

Since its inception 32 years ago, Life Foundation has been helping people who have been infected or affected by HIV find a way to go on living their personal lives after diagnosis. For many, the next step isn’t always the easiest and often very uncertain when your mind is being clouded with so many questions and realizations. This is where Life Foundation really steps in and ensures people are connected into HIV medical care.

And once there, retention in care is critical to the success in fighting HIV. Oftentimes that is challenging when people are ashamed to seek out assistance because stigma still plays a major role with having HIV, especially here in Hawai‘i.

With the recent news on Charlie Sheen, it doesn’t make his story any different from the millions of people living with HIV. It merely puts HIV back into the headlines and into the eyes and ears of a younger generation who overlooks the impact that HIV continues to have on people today. In the United States, our youth (ages 13-24) account for a quarter of all new infections. This number will not decrease if we don’t increase awareness. We do that by keeping an ongoing conversation about HIV: its past, what’s new and happening now, and how can we get to a HIV free future.

- Calvin Marquez, Life Foundation

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good fortune By: mickey weems

In 1993, Mike Hartley was at a bar when he encountered a Tarot card reader. “I thought it would be fun to have my cards read,” he remembered. She told him he was HIV-positive, but he assured her that he did not have it – he was careful and had just recently been tested. She was wrong – then.

But a few years later, her prediction came true. “My worst fears had been realized,” he said. Despite all his efforts at practicing safer sex, HIV was still in the cards for him.

Hartley was a Southern Baptist preacher in California who married, came out, divorced, left the pulpit, and started life anew. By the time he met the Tarot reader, he was already out in San Francisco, the fiercely LGBT capital of the West Coast. His world was rocked when he discovered he had HIV after he had moved to Hawai‘i: “I played the ‘woulda, coulda, shoulda’ game for about two and a half years before I decided it wasn’t really helping me that much.” He bounced back and made his fortune in the real estate business as the CEO of a condo management company.

Nevertheless, he was haunted by the one event that changed his life: There was an unexpected breach in prophylactic protection during an intimate moment, and we all know it only takes once. But, as he says in

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a video he shot for Life Foundation, the way we live with HIV determines whether we are victorious over it, or if it conquers us. Hartley decided to go for the win. Coming out as HIV-positive in the video, and the dedication he gives to Life Foundation in support of others like himself who are HIV-positive – these things do not only help others, they help him as well.

Proclaiming the Glory of the Lord Hartley came to California to become a Southern Baptist preacher. He did so despite his orientation, but in a church that was much more reasonable than the typical Southern Baptist stereotypes that flow from the Bible Belt back east. Another stereotype of Southern Baptists as strictly a white people’s denomination was likewise torn asunder: “The church I was a pastor of was also called Church of the Nations. I was the pastor of the English congregation, but we also had a Vietnamese, Cambodian, Japanese, and Korean congregation. All of the congregations also got together a few times a year for a joint service. It is not that unusual now, but in the 1980s, it was unheard of.”

Such communities working together for the greater glory of God became his sisters and brothers in Christ. “I was fortunate that I pastored a church that was a fairly left of center

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While I don’t wish HIV on anyone, I am not ashamed of being HIVpositive. I don’t want anyone else to be ashamed either.

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congregation,” he said. “I had a woman as an associate and we had women deacons. It was very diverse and committed to reaching out to the disenfranchised in San Francisco.” And Hartley knew what it was like being among the disenfranchised. His childhood was a tough one, which included having distant parents and being bullied in school.

He went to seminary in San Francisco, the perfect place for a man struggling with samesex desire, just in case he could no longer deal with the pressure to conform to the dictates of his denomination. “Thinking back, I suspect I was attracted to San Francisco because I knew that if I ever did come out, I would find a supportive community there.

And I did.”

The Wife that Remained a Friend The Bay Area was also where he met his wife.

“We were together and married 11 years. I was a campus minister at the time. She was going to SF State when I was in seminary. She was engaged to someone else. When I heard she had come back from summer break and was no longer engaged, we started to date. She had a great family. I was very close to her parents and siblings.” When he finally decided to come out, the marriage ended but they remained good friends. “She is remarried and has a teenage daughter now. She has visited me in Hawai‘i, and we keep up on holidays and birthdays as well as other times during the year.”

Hartley prides himself in the respect and affection they share, in no small part to the honesty they had between them despite the pain it caused them: “My greatest accomplishment in life to date is the integrity we had in our relationship for 11 years.”

Dim Sum Alert It was after the ominous warning from the Tarot reader that he received a second warning of his impending personal crisis. “I had just tested negative for HIV,” he said, “I was tired though. I liked dim sum. I had dim sum one day and broke out in a light rash on my face.” The dim sum reaction worried him, and after having experienced a prophylactic malfunction in the bedroom, he opted for EXPRESSION808.COM - d e c e m b e r 2015 | 11

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I learned that “ I can’t fight HIV alone.”

another test despite having recently taken one. “I think the combination of being tired and breaking out, and having sex and having a condom break after I had tested negative made me get tested again. I tested positive for HIV.” Despite the darkness of those days, Hartley still finds humor in the absurdity of the situation: “My doctor said the dim sum had nothing to do with it, but I am not so sure…”

When he decided to make Hawai‘i his home, he decided to volunteer his story as a testimonial for Life Foundation. The footage is of him speaking about how HIV cannot be overcome by oneself alone. Putting himself before the public eye as a person who is HIV-positive was the best thing he could have done – this act of compassion not only helped others, it reaped tremendous psychological help for himself. “I thought it would help me start living with HIV,” he recalled. “It definitely helped me turn a corner. It helped me own my status more. It helped me keep moving in grief and accept my status.”

Walking in Solitude, but Never Fighting Alone Hartley’s video also has him driving to Waikiki and walking along the beachfront around Queen’s Beach by himself. Ironically, his voice can be heard over the video as he strolls along the seawall by the Waikiki Aquarium: “I learned that I can’t fight HIV alone.” Even in 2015, it is still risky for a business person to publicly reveal being HIV-positive. Nevertheless, the benefits of doing so include the knowledge that he has

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a community that he can turn to, and more importantly, a community he can support by sharing his story.

When asked if revealing his status could be bad for him financially, Hartley said, “I wonder if it could have an impact, and I suspect it still could. To date, I don’t think it has, but if I were given the choice between work and my mental health, I am going to chose health every time.” It was a matter of priorities for him: “I also think when you choose health, other things have a way of falling into place, even if the path you end up on is different from the path you started on.

Living with HIV has made me a better person and a better CEO because I hope I have more compassion for people.”

No Longer a Preacher, but Still Called Although he no longer preaches, he has not given up on Christianity. “I was called to preach when I was 19 years old in a Southern Baptist church,” he said. “I still remember walking down the aisle crying. I don’t feel any less called today at 58. I understand the call differently today than I did then, but it is still a call to help people.”

Becoming HIV-positive was a pivotal moment in his life, one that he is not entirely reconciled with, but at the same time, one that inspires him to help his fellow human beings.

“While I don’t wish HIV on anyone, I am not ashamed of being HIV-positive. I don’t want anyone else to be ashamed either.”

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Chanting Through Stormy Days By: mickey weems Photos: JTL

Brad Lum is a familiar face in the LGBT and Hawaiian communities. His calm demeanor and unconcealed joy come from being tested through tough times with both HIV and cancer. He turned to his Hawaiian roots and Soka Gakkai International, a Buddhist organization that has been gay-friendly for a long time – the U.S. branch has been performing same-sex weddings since 1995 and has held LGBT conferences since 2001.

With strong Hawaiian roots and a Buddhist foundation, Lum is twice blessed, and he extends twofold aloha as he chants blessings in both traditions. But one thing still brings tears to his eyes.

Were HIV and cancer the only things that created health problems for you?

Brad Lum: In 2005 my family kicked me out of my childhood home. I found myself homeless nearly 10 years after I was diagnosed with HIV. This experience is devastating for anyone and especially for a Native Hawaiian gay man, where traditional and cultural dependence on family is the norm. Severing these ties without choice is tantamount to losing an arm or a leg. Five years later clinical depression took hold, and with an AIDS diagnosis, my health deteriorated along with my spirit.

suicide. Luckily I pulled through with going to a nursing home and seeing a psychologist as well as a psychiatrist. I was under the doctor’s care for four months.

But then, another health issue arose.

I was diagnosed with prostate cancer.

There was only one kind of aggressive treatment, and that was chemotherapy.

Out of the frying pan...

On July 28, 2014 I went for my first chemo treatment. My body could not handle it well, and that put me in the hospital for about two weeks. One day a friend of mine came to me after learning what I have been going through. He said, “Have you ever heard of Nam Myoho Renge Kyo?” I said yes, it was in a movie that I saw about Tina Turner.

She chanted it at a pivotal point in her life when her girlfriend saved her from abuse and violence that her husband put upon her.

I started training to become a member of Soka Gakkai International [SGI] Hawai‘i.

I remember chanting Nam Myoho Renge Kyo: Nam means “devotion to,” Myoho is the mystic law, Renge is “lotus flower” that produces both flower and seeds of life, and Kyo is the voices of all living things.

What got you out of despair?

Then what happened?

In March 2010 my health was deteriorating fast. Everything regarding my health started coming to an end of life situation. I almost died and also contemplated

My SGI sponsor and members of our district kept on chanting for me. I learned that many of my LGBT friends were SGI members. On September third I was admit-

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almost died, “ I and also contemplated suicide.

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ted to The Queen’s Hospital where I spent 30 days. My sponsor, district, and LGBT members of SGI chanted for me daily for a quick recovery. The doctor came to me while I was still recovering from chemotherapy and told me that the cancer was gone after only two treatments. I know it was because of me and countless others that I became cancer free.

How do you feel when you chant?

It gives me a sense of peace. I get chills up and down my whole body. I believe that every time I chant, something remarkable happens – things in my life just fall into place. So I continue to exert myself in this practice and study, and overcome obstacles that may block me from becoming the person I am.

How do you feel now?

I feel happy. I feel paʻa ka aina [grounded] and that if I continue to chant daily, I can overcome anything that life’s problems can bring. I’m so grateful that my district and sponsors continue to chant for me. I finally found a religion that is accepting of all LGBT people, and that I finally feel a sense of home and ‘ohana.

Was it also the goodwill and hard work of health professionals and those who stood by you?

I attribute my ability to thrive to my Buddhist practice and to health care professionals. One who comes to mind is Malulani Orton of the Life Foundation of Hawai‘i. She is my rock. She never gave up on me. I want to thank many friends who never left my side.

Mahalo from the bottom of my heart for believing in me.

What is your standing with the Hawaiian Community?

Since the late 1960s and early 1970s, there was a resurgence of Hawaiian culture. People like myself took a great interest in it. My generation believes that without being involved with anything Hawaiian, our people and culture were heading for destruction. Hula attracted me to the plate, and I became a serious student of my culture, which included chanting, language, hula history, art of making lei, and costumes.

Many kupuna and kumu hula have taught me the Hawaiian values that I was lacking. Because of guidance from Aunty Linda Danek, I became the person I am today: a chanter, master of protocol, and kumu hula. I also want to acknowledge Aunty Malia Craver, Aunty Hoakalei Kamau‘u, Aunty Maiki Aiu, Kahaʻi Tapolinski, and Charles Kaupu.

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Is there any conflict between your Hawaiian heritage and your SGI faith? Is there a problem chanting in both traditions?

In oli or Hawaiian chant, the aloha spirit contains the spirit of peace, the spirit to embrace others. The primary mission of Buddhism in my life is to enable each, Hawaiian spirituality and Buddhism, to bloom in its full potential. They weave together like a lei, my Hawaiian heritage and my SGI practice.

You are a mentor to young men.

They are beautiful human beings that I took upon myself to guide on the right path. If you have something to share to save a young man from suicide or being bullied, then you can create a safe place where they can live safely without fear of rejection and prosecution. I want to start something new today to open their eyes and keep them from hurting themselves.

And a kumu hula to a group of women.

As of December 2014 I became the new kumu hula of Hauʻoli Hula. I have 30 gracious ladies and we have done a few small shows around town. At the moment we are getting ready to compete in the Kūpuna Competition in Kona September 2016.

I am so excited to teach hula again! The last time I competed in any hula competition was 1991. In 1992 my hula halau got to dance for the prestigious Ethnic Dance Festival in San Francisco, California. In 1995 Patrick Makuakane and my hula group were part of the great Chinese New Year Parade with 200 hula

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dancers that graced the streets of San Francisco.

Of the two, which has been your biggest challenge: cancer or HIV? Both gave me a new lease on life. I attribute my ability to thrive to my friends, family, physicians, nurses, and my SGI faith.

Happiness comes to me with this adage: “He Hoʻokele Waʻa No Ka Lā ʻIno,” which means “A canoe steersman for a stormy day.” It is used to describe a courageous person. This saying reminds us all that we must be brave and adaptable as we navigate through life because the environment can quickly change from pleasant to stormy.

You said that one thing still brings tears to your eyes.

I cry every time I do a same-sex wedding because I did not know it was going to be a reality in my lifetime. When the AIDS epidemic hit high proportions in the early ‘80s, most of my closest and dearest friends passed away. Most of them had partners.

When they died, the family came in and took everything. Most times they kicked the partner out of the home that they had worked hard for many years.

Many of my LGBT brothers and sisters went through similar situations of family disowning them. What gave us strength was using the Hawaiian values of tolerance, pride, and most important, aloha.

This brings us back to November 2013. With these kinds of values, we as a small island community and allies passed marriage equality in Hawai‘i.

Dear Cancer and HIV, What if I told you that the sacrifices I have made to compete are the victory, in and of itself? What if I did not measure my successes by wins and losses, but my will and triumph over slumber, my focus to prepare, my courage to contend? What If I told you I win when I open my eyes every morning? Cancer and HIV – you will not

triumph over me because I am possible.

- Brad Lum

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I get chills up “ and down my whole

body. Every time I chant, something remarkable happens.

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Leanna Lui knows what it’s like to be the exception to the rule. She is a social worker by trade, a community volunteer, and HIV-positive.

It is easier to move about in this world without revealing one’s HIV status in this regard – even in 2015, there is stigma attached to the disease.

Lui agreed to speak with eXpression! about life as the Odd Girl Out in the HIV-positive community that accepts her, and the rest of the world that is still trying to understand.

Discovering HIV+ Status Leanna Lui: It was April 2005. I received a certified letter informing me that I could not qualify for insurance because I tested positive for HIV. I was in disbelief and immediately sought clarification in hopes to find it was a mistake.

Unfortunately it was not, so I proceeded to seek verification and a second opinion with my physician. The results returned confirming I was positive. A life with marriage and children seemed to be no more.

Too Straight for AIDS I think much of my frustration with being diagnosed as a straight woman was that I didn’t fit the stereotype. So what if I wasn’t extremely promiscuous, wasn’t an intravenous drug user, or never got a blood transfusion? I had sex. I wasn’t a virgin! Anyone, even the first time, could have been at risk of contracting it.

Honestly, how many of us can say we were only having sex with other virgins?

When AIDS Was Not an STD Although I can deduce I contracted HIV from unprotected sex, I would not know when because I never actively checked my status after the one test I took accompanying a friend for support in 1997. I took it for granted and assumed that my OB-GYN [obstetrics and gynecology] screened for it annually and I was in the

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clear. I remember being asked if I wanted to get screened for STDs and said yes, thinking it meant for everything. It wasn’t. HIV tests were separate and needed to be requested then. I had boyfriends that were not monogamous, and I never actively insisted on safe sex in my past with all partners; therefore, I’ll never really know from whom or when.

Life Sentence/Death Sentence I was diagnosed with AIDS because my t-cell count was below 200. My family physician was great about trying to get me prompt care referring me to another physician who could provide me more updated care suited to HIV needs. I was also referred to the Department of Health [DOH] because of my t-cell count.

I remember freaking out for the second time after meeting with the DOH. I thought I was going to die for sure. I remember thinking, so does that mean I only have 10 years to live? Then I got connected to the Life Foundation and got a crash course on HIV – The significance of AIDS [as opposed to being HIV-positive] as a medical label to indicate the lower t-cell count and risk of being more susceptible to illnesses.

Timeline of Physical Intimacy After I was diagnosed in 2005, I was concerned about my past partners. I worked closely with the DOH to provide them info to contact each person and give them an opportunity to be notified and tested. I provided the DOH a spreadsheet of my past partners’ description, contact information, and the time frames I was intimate with them. They said they were able to contact everyone except one person who may have moved to the mainland.

Blessings: Family and Friends I have been extremely fortunate and blessed to have the family, friends, and acquaintances

leanna

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My frustration with being diagnosed as a straight woman was that I didn’t fit the stereotype.

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that I do. Disclosure was a personal challenge for myself to come to terms with my own fears of how I’d be perceived or rejected. However, the process became easier as I did it with each subsequent person. I found much support and unconditional love.

First Shaky Steps I didn’t know if my dreams to be married and have children were still attainable. I wasn’t sure if anyone would ever be interested in me with HIV. I was in a fairly new relationship when I was diagnosed. I gave my boyfriend the option at the time to leave the relationship with full understanding and without judgment – I was not sure I would have stayed in the relationship had it been the other way around. Credit be given to him for choosing to stick it out and see what came of the relationship.

Unfortunately, circumstance of the relationship changed. We could not come to terms with ways HIV affected our relationship and sex life.

List of Stupid Rules I had to really redefine what I wanted in a partner, so I came up with my List of Stupid Rules.

1. Three date minimum before disclosure. I thought that would be enough time to gain a basic background and introduction of a person, and figure out if they were trustworthy and interesting enough for me to move to the next phase with. If my spidey senses inclined me to feel comfortable, I would share my status.

2. Prior to disclosure: no physical interactions that would be considered affectionate, intimate, or PDA. This included holding hands, prolong hugging, hanging, holding, or kissing. Sex was definitely out of the question. I didn’t want to offend anyone with any regret that they wouldn’t have interacted with me “if they knew my status” or “how come she didn’t tell me before?”

3. Candidate must be open-minded, accepting, and respectful of varying diversities of people, culture, and lifestyle. If we got that far for me to disclose my status and make myself available for questions, the apprehension would be with their response and acceptance of my situation. If we could get past that, then I would express my intentions for a longterm relationship, marriage, family, and children.

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4. Mandatory discussion of terms and conditions to becoming involved with me [monogamy, safe sex practices, etc.]. I could not be responsible for spreading HIV directly or indirectly.

5. A period of abstinence [three months]. We must determine our true intentions, commitment, and compatibility to pursue something more serious.

Losing Faith, Finding Love At one point, I did not have much faith in finding a successful long-term partner, and considered artificial insemination and being a single parent. Then I met Mike.

Falling in Love, on Her Terms Mike and I met for the first time on my birthday in 2009 through a mutual friend. He asked me on a date a couple days later, insisting he cook me dinner at my home. After a wonderful meal and conversation, he asked to kiss me. I told him no. However, he was persistent; so I told him, “Fine, let’s put it all out there,” and I disclosed my status.

He barely blinked before planting a kiss on my lips and told me that wasn’t going to scare him away. So we began a conversation about HIV. I shared my intentions of becoming involved in a relationship and discussed the topics, terms, and conditions that were included in my Stupid Rules. I was quite surprised that he seemed sincerely interested, so I gave him permission to share my status with a couple of people.

He spent the remainder of the evening into the next morning researching HIV, talked to his sister, best friend, and came to the conclusion that he wanted to give us a fair shot. I emphasized that sex would likely be dictated by my health status, and there may be times of involuntary need to abstain. Our relation-

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ship needed to be built and sustained on something more than sex. He needed to get tested at least yearly.

Stupid Rules: #5 Goes Out the Window We agreed to abstain from any further intimacy for three months while we discovered more about each other and whether we’d become more serious. Yup, that lasted about a month.

Rebirth My hopes and dreams were becoming reality. He proposed several months later, then a home, the blessing of my son, and most recently my daughter. She was born to me on my 39th birthday. Just 10 years prior, I thought it was all impossible. [Mike and Leanna went through every precaution in the conception and delivery of their children to ensure neither was HIV-positive.]

Reciprocal Love Although our relationship developed quickly, we had real talks about our expectations. We are not the fairytale couple. We have miscommunications and spats like any couple, as we are different people with human emotions.

However, at the end of the day, we know our commitment to each other is strong, and our commonality is our love for our family that we have.

I’m thankful for my husband who accepts me and doesn’t define me by having HIV. He continues to seek out information about HIV medication and treatment developments, and has been proactive about making suggestions about the use of PrEP. To learn more about PrEP and options for couples with one HIV-positive partner, go to LifeFoundationHawaii.org.

leanna

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I remember thinking, so does that mean I only have 10 years to live?

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fearless By: mickey weems | Illustration: Anna Ismagilova

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Pono is a proud mahu who has been HIV-positive for 30 years.

She faced her own mortality and lived to laugh about it. When the medications she was taking caused her butt to lose fat, and then fat thickened above her shoulders, she joked that her butt had moved up her body. When her friends touched her neck, she’d say, “Quit touching my ass!”

That kind of fearlessness has seen her through times that many of her friends in the early 1980s did not live to see. It has also made her a frank assessor of the current state of HIV in Hawai‘i.

As a nurse who works with HIVpositive patients, she knows all the good things that have happened in HIV/AIDS research are worthless if her clients are not informed or motivated enough to take advantage of them.

I spoke with her at my home in Nu‘uanu Valley. The Makahiki rains of November had just kicked in – everything was green and lush. She and I talked about plants as we toured my little garden. Pono has an eye for life, be it flora or fauna. Together we mourned an ‘ihi‘ihilauakea fern that had died on me during the hot days of early September, its shamrock-like leaves wilted beyond repair.

Amidst the greenery the rains

bring, we discussed the progress that has been made in HIV treatment and prevention. I told Pono I wanted this issue of eXpression! to be upbeat. She reminded me we have so much further to go.

She should know. She lived the AIDS crisis from its beginning.

You say you have no fear, but you do not wish to share your identity for this article. Why? Pono: I have no fear in people knowing I have HIV as far as disclosure is concerned. I keep anonymous because I work with people who do not wish to have their status disclosed. If I was public with who I am, there may be a chance that my client’s confidentiality could be compromised.

Can you give us an example of how this could happen?

Say for instance if I went to the prisons to meet an incarcerated client, and this article showed who I am and the magazine is circulated in prison. My incarcerated client may be outed and could be in danger of being attacked. Or if I was working with people dealing with domestic violence and they are in the process of trying to tell their abuser but need to plan for their safety, and this article associates them with me – that could be disastrous. I would not be

able to live with myself if anything tragic happened to anyone.

You personally know what it’s like to live under a death sentence! You were told you were going to die when you found out you were positive.

I was diagnosed in the mid ‘80s and at the time there was no treatment. People died frequently.

They soon came out with AZT, but even that was difficult because the dosage at the time often was not therapeutic. Many became ill from the meds. I can say that I was profoundly affected when the counselor told me that I would die in two years. I was in my midtwenties.

So what happened?

I waited to die. Whenever I saw my friends dying, the first thing I thought to myself was, “You’re next!” To this day, seeing all that death and knowing in my head that my death would be soon – that experience affected me and will for the rest of my life.

So you decided to fill your last days with acts of compassion.

As a nurse, I worked in the hospital and I was able to nurse my friends who were patients on the floor I worked on. Some of them were really great friends, others

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po no

were past lovers, and others were people in the community.

I was lucky to be there to see them through, whether being discharged from the hospital or being their nurse to see them through their last breath.

But when that happened, I would go home and think, “I’m next.” That never came. I am now in my mid-fifties.

No meds until ‘96?

None. I saw too many people get too sick off the meds that I thought it wasn’t worth it. I figured if I was going to die in two years like I was told, then f*ck it – no meds are going to help, so there is no need to see a doctor and no need to take meds. Plain and simple. I did not see a doctor for over 10 years. Then in ’96 I came down with hairy leukoplakia and I thought to myself, “Wow, finally I get to die! The wait is over.”

That’s an intense way to go through life.

Living my life like it was my last day was good, though. It taught me a lot about how to love.

What changed your mind about taking meds?

Things became different in 1996. I was walking home one day and ran into a friend who had been fighting for his health, and we started chatting. He looked healthy and had gained weight. He said that it was time for me to start meds: “They will save your life now. It is not like it was before.” He told me to go see a doctor. So I did and started the meds.

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You said that AIDS stigma still affects the people of Hawai‘i.

Lately I have seen a lot of men in their fifties and sixties being admitted to the hospital with opportunistic infections from advanced stages of AIDS. It is great to see that they are seeking help, but this is a bad sign because this also means that they are not getting messages about HIV and are now in a health crisis, and oftentimes dying or close to death by the time they seek help. For some it is too late for treatment. I see this a lot!

Why is this happening?

This means that they probably had HIV for a while and somehow did not have one or more of the following things: First, they were unaware of the HIV status. Second, they knew their HIV status but were too ashamed to seek treatment. Third, they were misdiagnosed by physicians that are not HIV savvy or have little experience with HIV. Fourth, they assumed that they were not eligible for insurance and thus did not seek any medical help. And fifth, they may have known their HIV status, but felt it would be best if they were better off dead, as if it were a death sentence.

The problem sounds like it’s different according to the generation that the client belongs to. How do we address different generations?

We found that peer counseling is an effective way to address different generations and ages.

However, it was also effective

pono

in having hulu makua [esteemed elders] that can lend some wisdom and guidance. If we address younger generations with guidance from hulu makua or long-term survivors, we bring hope that living with HIV or having a diagnosis of AIDS is not necessarily a death sentence.

For elders, especially those who have not been in treatment, AIDS can be extremely isolating and lonely. Many are seeking treatment for the first time or are on the down-low, both with their sexual practices and with their diagnosis. When there is someone their age who can mirror their feelings or empathize with their situation, it can bring them out of darkness and into treatment.

What other challenges do you face?

Though the death rate has declined, the cost of living with HIV and AIDS has not. And because the death rate has declined, funding had dropped tremendously. Some states, Hawai‘i included, are restricted from being funded because the numbers supposedly are low for HIV and AIDS diagnosis in comparison to other parts of USA.

Is this part of a cycle: funding, things get better, funding cut, things get worse?

It’s hard to tell. Hopefully with the news about Charlie Sheen coming out about his status, maybe more awareness comes with it. When a new celebrity comes out, it refreshes people’s memories that much more. That is part of a cycle.

With the newer diagnoses that we discover, you hear things like, “All I have to do is take a pill.”

Well, that may be true, but there are still many health issues that come with HIV. In addition, not all respond without debilitating side effects.

As you say, the plague’s not over yet, and stigma is still an issue. You are especially critical of the word “clean” when used in reference to HIV. I hate when you see ads on these dating sites that say “Must be HIV clean,” which implies that HIVpositive people are dirty. F*ck that.

For you personally, how do you feel about the cards dealt to you in this life?

I am where I’m supposed to be.

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