A&U Magazine June 2022

art & understanding for 31 years

FICTION:

An Excerpt from Well With My Soul by Gregory G. Allen

REMEMBER WHEN:

Long-Term Survivors and Their Allies Share Memories and Art Stories from the Edge of a Pandemic

wolfgang

BUSCH

Uses Art and Activism to Preserve HIV and AIDS History

JUNE 2022 | ISSUE 332

IMPORTANT FACTS FOR BIKTARVY®

This is only a brief summary of important information about BIKTARVY and does not replace talking to your healthcare provider about your condition and your treatment.

(bik-TAR-vee)

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

POSSIBLE SIDE EFFECTS OF BIKTARVY

BIKTARVY may cause serious side effects, including:

BIKTARVY may cause serious side effects, including:  Those in the “Most Important Information About BIKTARVY” section.  Changes in your immune system. Your immune system may get stronger and begin to fight infections that may have been hidden in your body. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY.  Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY.  Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.  Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.  The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), and headache (5%).

 Worsening of hepatitis B (HBV) infection. Your

healthcare provider will test you for HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking BIKTARVY. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to check your health regularly for several months, and may give you HBV medicine.

ABOUT BIKTARVY BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults and children who weigh at least 55 pounds. It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements.

BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS. Do NOT take BIKTARVY if you also take a medicine that contains:  dofetilide  rifampin  any other medicines to treat HIV-1

BEFORE TAKING BIKTARVY Tell your healthcare provider if you:  Have or have had any kidney or liver problems,

including hepatitis infection.  Have any other health problems.  Are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby.

Tell your healthcare provider if you become pregnant while taking BIKTARVY.  Are breastfeeding (nursing) or plan to breastfeed.

Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

Tell your healthcare provider about all the medicines you take:  Keep a list that includes all prescription and over-the-

counter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

 BIKTARVY and other medicines may affect each other.

Ask your healthcare provider and pharmacist about medicines that interact with BIKTARVY, and ask if it is safe to take BIKTARVY with all your other medicines.

These are not all the possible side effects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088.

Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.

HOW TO TAKE BIKTARVY Take BIKTARVY 1 time each day with or without food.

GET MORE INFORMATION  This is only a brief summary of important information

about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more.

 Go to BIKTARVY.com or call 1-800-GILEAD-5  If you need help paying for your medicine,

visit BIKTARVY.com for program information.

BIKTARVY, the BIKTARVY Logo, GILEAD, the GILEAD Logo, GSI, and KEEP BEING YOU are trademarks of Gilead Sciences, Inc., or its related companies. Version date: February 2021 © 2022 Gilead Sciences, Inc. All rights reserved. US-BVYC-0008 01/22

#1 PRESCRIBED

HIV TREATMENT * *Source: IQVIA NPA Weekly, 04/19/2019 through 05/28/2021.

KEEP BEING YOU.

Because HIV doesn’t change who you are.

BIKTARVY® is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in certain adults. BIKTARVY does not cure HIV-1 or AIDS.

Ask your healthcare provider if BIKTARVY is right for you.

ONE SMALL PILL, ONCE A DAY Pill shown not actual size (15 mm x 8 mm) | Featured patients compensated by Gilead.

Please see Important Facts about BIKTARVY, including important warnings, on the previous page and visit BIKTARVY.com.

Scan to see their stories.

Contents

June

2022

GALLERY

20

Long-Term Survivors, Visual Artists and Allies Share Memories and Art

COVER STORY

28

A&U's Alina Oswald Talks to AwardWinning Filmmaker and Activist Wolfgang Busch About the Importance of Preserving HIV and AIDS History

36

FEATURE

Long-Term Survivors and Their Allies Remember the Pandemic in Stories of Loss and Hope

FEATURES 16 Fiction

An Excerpt from Gregory G. Allen's Well with My Soul

34 Nonfiction Dark Angel, An Excerpt from Journeys Through Darkness: A Biography,

by Alina Oswald

36 Stories from the Edge of a Pandemic

Long-Term Survivors, Activists, and Allies Remember the Early Days of the HIV and AIDS Pandemic cover photo by Alina Oswald

DEPARTMENTS 4 6 9

Frontdesk Digital Footprints NewsBreak

lifeguide 14

Money Matters

Frontdesk From the Editor

Recording History as It Happens

F

or many, June embodies the essence of "summer" and "activism." June is Pride Month, and also HIV and AIDS Long-Term Survivors Awareness Month. It celebrates the long-term survivors, those individuals who're still here to tell the story, and to ensure that the AIDS history continues to be documented for generations to come.

Using art to preserve history and HIV and AIDS history is part of Wolfgang Busch's DNA. Busch is a filmmaker, mentor, and activist. Over the years, he has won prestigious awards, including the 2015 Keep the Dream Alive Martin Luther King Jr. Humanitarian Award "for his social and artistic activism for the Black and Hispanic LGBTQ+ Ballroom community," and, most recently, the 2021 A-List New York Award, which honors remarkable men who "make a difference in their work and communities."

Wolfgang Busch is also this month's cover story subject. While revisiting the history of HIV and AIDS, he reminds us of the importance of documenting the pandemic, and cautions about what can happen if we don't. "We still cannot comprehend how much we've lost because of HIV and AIDS," he says. "The HIV and AIDS pandemic has left such a vacuum. And if we don't document [the pandemic] at the time when we

can, all these stories get lost. Because even with COVID, people are already starting to forget."

Also, in this issue, A&U talks with HIV and AIDS long-term survivors--artists and activists--from all walks of life, and with their allies. They all share memories, as well as artwork inspired by those early days of the pandemic, or recount stories about loss, hope, and triumph over the virus. And they remind present and future generations that "the fight is far from over" and "we still have work to do" to ensure "a world free from HIV."

AMERICA’S AIDS MAGAZINE issue 331 vol. 31 no. 5 May 2022 editorial offices: (518) 205-5024 Editor in Chief & Publisher David Waggoner Managing Editor: Alina Oswald Editor at Large: Chip Alfred Special Projects Editor: Lester Strong Arts Editor: Alina Oswald Fiction Editor: Raymond Luczak; Nonfiction Editor: Jay Vithalani; Drama Editor: Bruce Ward; Poetry Editor: Philip F. Clark; Copy Editor: Maureen Hunter Contributing Editors: Reed Massengill, Kelly McQuain, Lesléa Newman, Robert E. Penn, Nick Steele Contributing Writers: Ruby Comer, Alacias Enger, Claire Gasamagera, John Francis Leonard, Corey Saucier Art Director: Timothy J. Haines Contributing Photographers: Tom Bianchi, Holly Clark, Stephen Churchill Downes, Greg Gorman, Francis Hills, Tom McGovern, Annie Tritt, Tommy Wu

DAVID WAGGONER

National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 205-5024 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 205-5024 Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Founding Board Members: Mark S. Labrecque, 1961–1992, Christopher Hewitt, 1946–2004, Mark Galbraith, 1962–2011 In Memoriam: Bill Jacobson, 1939–2005 Rhomylly B. Forbes, 1963–2011 • Chris Companik, 1957–2012 • Nancy Ellegate, 1959–2015 • Patricia Nell Warren, 1936–2019 • Jeannie Wraight, 1968–2021 • Robert Schelepanow, 1946–2020 • Richard Garcia, 1951–2021 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 4 Hall Street, Hoosick Falls, NY 12090, USA. For A&U advertising information please call 518-205-5024; for subscriptions and address changes please call 518-205-5024; for letters to the editor and unsolicited manuscripts write A&U Magazine, 4 Hall Street, Hoosick Falls, New York 12090; or e-mail: mailbox@aumag. org. All unsolicited manuscripts that do not have a S.A.S.E. cannot be returned and will not be acknowledged. ©2021 Art & Understanding, Inc. ALL RIGHTS RESERVED. A&U may not be reproduced in any manner, either in whole or in part, without written permission of the publisher. A&U and the graphic representations thereof are the registered trademarks of Art & Understanding, Inc., a 501(c)(3) nonprofit organization. Individual Subscription rates: $24.95 (12 issues). Institutional rates: $80.00 (12 issues). For subscriptions outside the USA and possessions, $30.95/Canada, $49.95/international, payable in advance in U.S. currency. First North American serial rights revert to contributors upon publication. A&U retains the right to anthologize work in further issues, as well as in microform or reprinting on the Internet within the context of each issue. Statements of writers, artists and advertisers are not necessarily those of the publisher. Readers note: subjects and contributors to A&U are both HIV-positive and HIV-negative. In the absence of a specific statement herein concerning the serostatus of any individual mentioned in, or contributing material to, this publication, no inference is made with respect thereto and none should be implied. Letters written to A&U or its contributors are assumed intended for publication. Art & Understanding, Inc. assumes no responsibility or liability for unsolicited submissions and does not guarantee the return thereof.

PostMaster: Please send address corrections to A&U Magazine, 4 Hall Street, Hoosick Falls, NY 12090 USA

Printed in USA • Visit our Web site at www.aumag.org

Digital Digital D ig igi git ita taal Footprints Fo Footprints ootpprint in nts ts mostshared

art & understanding for 31 years

In the May cover story, celebrity host and actor Ron B. talked about her heritage as a source of inspiration for her art and activism.

Her story resonated with many and was shared around the world

Fiction: An Excerpt from a New Book

by Hans M. Hirschi Looking Back on

AIDS Walk

RON B.

Breaks Boundaries in Her Art & Activism

MAY 2022 | ISSUE 331

Photo by Alina Oswald

mosttweeted Visual artists came together to explore the meaning of intersectionality—of HIV and other, newer, crises. Their answers, in words and art, resonated with a broad online audience.

@AmericasAIDSMagazine

6

@au_magazine

mostloved The retrospective on AIDS Walk, New York, received much praise and love.

@au_americas_aids_magazine • JUNE 2022

ALI NA O S WALD Photography

portrait - editorial - creative - promotional - event

photo editing & retouching photo education portfolio review

alinaoswald.com

NewsBreak

Press Releases Press Releases

SERINC5 antiviral protein can inhibit both hiv and sarsCoV-2

S

erine Incorporator 5 (SERINC5) is a protein that can pass the cellular membrane and restrict the number of retroviruses, such as HIV, by incorporating in the budding virions and, hence, leading to the inhibition of virus infectivity. In response, the retroviruses encode factors that counteract the protein’s antiviral effect.

The role of SERINC5 on retroviruses, specifically HIV, is not new; yet its potential effect on other virus families is about to be discovered.

A new research study from the University at Buffalo has taken a closer look at the role of SERINC5 in other viruses, such as Severe Acute Respiratory Syndrome Coronavirus 2 or SARS-CoV-2.

The result of the study was presented by virologists at the Jacobs

VAVA VOOM

T

School of Medicine and Biomedical Science, and published in Nature Communications. This particular study has shown that, as with the human immunodeficiency virus, the SERINC5 protein also inhibits the coronavirus from entering the cell, by blocking the virus-cell fusion. And also, as with HIV, the coronavirus counteracts SERINC5’s antiviral effect by blocking the incorporation of SERINC5 in budding virions.

Read more online at https://www.nature.com/articles/s41467022-30609-9

• JUNE 2022

his year, Visual AIDS’ VAVA VOOM benefit honors activist filmmakers Jean Carlomusto and Tom Kalin, Icon of the House of Ninja Milton Garcia Ninja [A&U, June 2014], and artist Frank Moore (1954 – 2002), the founder of the Visual AIDS archive. Hosted by Jake Bruch and Candystory, the event takes place on June 28, at Houston Hall, in New York City. It includes a silent art auction powered by Artsy, which launches on June 15.

Learn more by visiting online at https://visualaids.org/blog/vava-voom-isjune-28th.

JUNE 2022 •

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Without health justice, we cannot end the HIV epidemic.

Show your support at sfaf.org/shop

10

• APRIL 2022

b r o a d w a y bares' thirtieth anniversary show

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his summer Broadway Bares celebrates thirty years “of baring it all” with Broadway Bares: XXX. Inspired by the show’s “sexy and sensual three-decade run that has taken audiences on various “voyeuristic voyages,” the onenight-only extravaganza returns as an in-person event on Sunday, June 26, 2022.

“We’ve been waiting to celebrate our thirtieth anniversary in person for two years and we are going FULL OUT,” Broadway Bares creator, Jerry Mitchell, says. “It’s time to celebrate life and raise money to help provide meals and medications, health care and hope for those who need a little help right now. Whether it’s been three years or ten years since you last saw Bares, out thirtieth edition will be a show for the ages.”

The show is produced by and benefits Broadway Cares/Equity Fights AIDS. Tickets are available on sale at broadwaycares.org.

JUNE 2022 •

11

MONEY MATTERS

by Alacias Enger

lifeguide

PAYING YOURSELF FIRST

D

Having a Strategic Plan for Meeting Goals

avid is a thirty-year-old Oregon native working in the tech industry. He is happy with the current trajectory of his career and has a passion for all the outdoor activities associated with living in the Pacific Northwest. David’s employer provides him with benefits including medical, dental, and a retirement plan containing a 4% match. He uses his health insurance in conjunction with a copay program for medications.

David already has many strong financial habits. He is contributing enough to his 401k to get the full employer match. He drives a car that he owns outright and doesn’t carry any credit card debt. He watches his spending by limiting the amount of money he spends dining out and on entertainment. While David is doing so many things right, he is also concerned about the lack of headway he is making in other areas of his financial life, such as liquid savings, retirement savings, and student loan repayment.

According to data from Experian, individual student loan balances have reached a record high of $38,792 as of 2020. David’s student loan balance comes in just under that at $32,000.

Like so many Americans, David has not made any student loan payments during the two years in which payments have been paused. As of August

14

of 2022, that pause will be lifted and David has to, once again, become responsible for making those payments. He would really like to devise a plan in which he aggressively attacks them and is rid of the burden once and for all. Subsequently, David has been transferring money into his savings account periodically, building up $1,200 that can be used in case of emergencies.

While he’s proud of himself for the amount he has saved, he recognizes that he hasn’t been consistent enough and would feel more secure if his emergency stash was higher. Lastly, David is doing a terrific job of capturing the full amount of the employer 401k match; however, he also has concerns that he may not be saving enough.

Overall, David isn’t in bad shape. He just needs a plan which includes paying himself first.

This is more effective than doing it as an afterthought and waiting to see what remains of his paycheck. Under the 50/30/20 Budget, 20% of an individual’s income is allocated to the overall category of Goals (while 50% is for Fixed Expenses and 30% for Flexible or Lifestyle Expenses).

Things like debt repayment, savings, and investing all fall under this category. Therefore, David’s primary areas of concern are all items that would pertain to the Goals category of his budget. Of the 20% of his income that should be allotted to Goals, David is already using 4% of that for re-

tirement savings. This leaves 16% of his income in which to assign a job. Designing a budget is one of the cornerstones of good personal finance because it allows you to take charge of your money by assigning each dollar a job. In doing so, goals can be achieved faster, which in turn frees up more of your income for lifestyle choices. David might consider splitting the remaining 16% of money allocated to that category between beefing up his liquid savings and paying down his student loan debt.

Once he is satisfied with the level achieved in his emergency savings (generally three months of expenses or more), he can reassign those monthly dollars to the continual paydown of his student loans and increase his retirement savings.

David also had a recent windfall of funds.

Since he waited until April to file his taxes, he just recently received his refund of $2,900 between Federal and State. Being unsure of how best to use these funds, he has left them untouched in his account. He might choose to use these funds as a part of his emergency savings to expedite the completion of that goal.

Alternately, he could pay down his student loans with them or split the funds between the two goals. While this refund has provided David with a nice opportunity to put one of his goals on the fast track, he should also consider revising his tax withholding at work. In doing so, David will see more money in his paycheck each month, which will be helpful now that his student loan payments are in full swing again.

Even those with good financial habits, like David, can benefit from having a plan. The very simple act of setting goals and designing your budget to give every dollar an assignment is the key to a financially satisfying future.

Alacias Enger is a performing artist, writer, and educator. She lives with her partner in New York City, and is the founder of blogs “Sense with Cents” and “Travel Cents.” If you are living with HIV/AIDS and would like to stay on top of your personal finances, email questions to au.moneymatters@gmail.com for possible inclusion in Money Matters. Follow her on Twitter @ sense_w_cents.

• JUNE 2022

Well With My Soul

by Gregory G. Allen

I

FICTION

Excerpt

16

t seemed as if everyone had been trying to keep this secret from me for as long as they could. But Samantha was tired of fighting Jacob over whether to tell me or not and had to make the call. It was my worst fears come true. My brother was sick.

He was not using drugs again. No matter how many other people I knew that had succumbed to this horrible disease, when it hit your family -- when it was your flesh and blood -- it was a different story all together.

The dreaded virus was attacking my brother and his fight would not be an easy one. His medicines had stopped working and he had been in and out of the hospital a few times.

Samantha and Jacob had managed to keep it from everyone except Rachel, but now she needed me to know.

I went to Samantha’s apartment to pick her up and ride down to St. Vincent’s Hospital. Even though they lived on the Upper West Side, Jacob’s doctor was associated with the hospital in the Village and she would constantly take the long subway down. I told her that this time she was worth the cab fare.

“How are you, Sam?” I asked, as we rode downtown.

“We pray,” she said.

“Sam, I want to know about you,” I said.

“Don’t give me all the church crap right now.”

She looked into my eyes.

“I’m exhausted. It’s tiring on my body to come down to be with him each time he goes in,” she said. “I have the children. Thank God that Mikey is in school all day, but Ronnie’s preschool is only half a day.”

I felt awful for Samantha. It’s not fair that she was handed this lot in her life, but

I didn’t want to pity her, even though she looked tired and fragile herself.

“Please let me help more,” I said. “I can go sit with him. I can pick up the kids. Just call me.”

“Thank you, Noah. I appreciate that,” she said.

“How long have you both known?” I asked.

“I hate telling you this. You are family and we’ve never shared it with you.”

“It’s fine,” I said.

“Four or five years now,” she said.

She had found out right before she had Veronica. The thought of what she had gone through made me extremely sad. I pulled her into my arms. I wanted her to feel safe, if only for a short while of riding down 7th Avenue. We didn’t speak. She just looked out the window, as we passed Madison Square Garden. I wondered if she was thinking about Jacob, or about herself, if there was a life before Jacob that had made her happy?

“My whole life has changed,” she said.

“I’m sure you feel angry and misled by it all,” I said as the cab pulled up and we got out.

“Noah, your brother is not the same man anymore,” she said. “If he says something to you, just go along with it. Dementia has set in, the doctors say.”

“I understand,” I said. “And I won’t hold it against him. Or against you for standing by his side. You are an incredible woman.”

Samantha gave me a huge hug and turned to lead me through the front door of the hospital. We walked to the elevator and took it to his floor. I hated walking those hallways, with its sterile smell and noisy

• JUNE 2022

monitors. Sickness, death, endings -- it all flooded my mind.

There was my older brother, barely taking up much of the bed, looking weaker than I had ever seen him before. There had always been a frailty to him, but only in his build and demeanor. A misconception, for he had always still been strong. But not now, now the illness was ravaging his body like a coyote feeding on its prey.

He looked like a vampire in his gauntness and paleness. I thought the parallel was strange. A vampire feeds on blood and Jacob had a time bomb running through his blood that could eventually kill anyone that came in contact with it.

“Honey, I’m here with your brother,” Samantha said. “Are you asleep or just resting your eyes?”

Jacob opened his eyes in a slow and deliberate way. “I’m asleep,” he said.

“I see the hospital hasn’t taken your sense of humor,” I said.

“Why are you here?” Jacob screamed.

“How did you know? Sam?” “Don’t blame Sam for anything,” I said.

“You think I don’t know when something is wrong with my own brother?”

“The walls are green with spaghetti,” Jacob said.

I caught Samantha’s eyes, which seemed to say go along with it, so I didn’t miss a beat.

“We’ll have to get that cleaned up then,” I said.

Samantha sat on one side of the bed wiping Jacob’s forehead with a wet cloth. I walked to the other side to my brother and put my hand on top of his.

“You have Dad’s hands, bro,” I said.

“Funny. I thought I would have Mama’s,” he said.

Samantha stood and picked up the water jug. “I’m going to go get some more ice water.”

I smiled at her as she walked out of the room. I looked back down at my brother and settled into a chair, sitting right up next to the bed.

“My little Bubba ... what am I going to do with you?”

Jacob asked.

“With me? I’m not the one in a hospital bed,” I said.

Jacob turned to look out the window.

“What do you think Mama looks like?” he asked.

I wasn’t sure if that was a real question or if it was his dementia.

“I think she’s probably just as beautiful now as she ever was,” I said.

“I think she is sitting next to God,” Jacob said. “Between him and Jesus and holding court.”

I smiled. “That would be Mama all right.”

“I want to see her,” he said.

This made me feel very uneasy.

“You will see her,” I said. “Someday. We both will.”

“My back hurts,” he said.

“It’s called bed sores,” I said. “You’ve been in one spot too long.”

“My finger wants to fall off and walk across the hall,” he said.

His mind was slipping. Is this what would become of the last conversations I would ever get to have with my brother?

“If it does...I’ll go get it and bring it back,” I said.

Jacob started singing.

“She’s 41 and her daddy still calls her baby. All the folks ‘round Brownsville thinks she’s crazy.”

Visit the author's website at www.gregorygallen.com

JUNE 2022 •

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the AIDS activist project Faces from the frontlines of the fight against AIDS

sum

25 years in the making, over 60 portraits of the people who stood up and fought the AIDS Crisis.

Find out more & purchase your copy at www.theaidsactivistproject.org

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Summer camps for youth impacted by HIV/AIDS, LGBTQ+ young people, and children experiencing homelessness Providing a safe community for those in need is more important than ever before. Give the gift of camp today to ensure camp is here for young people facing stigma and isolation.

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On June 5, Long-Term HIV and AIDS Survivors Awareness Day, Visual Artists Share Memories and Art

by Alina Oswald

"I

am a warrior fighting the virus that’s trying to kill me,” Kurt Weston [A&U, November 2005], once told me. Diagnosed with AIDS in 1991--and a few years later with CMV retinitis, which took away most of his eyesight--the award-winning photographer continues to fight, and win, his war against HIV. His artwork is a testament to his experience, and it documents his survival and activism.

HIV and AIDS long-term survivors are, indeed, warriors. They are mentors, artists and activists who give younger individuals the courage to fight their own wars related (or not) to HIV and AIDS. And like Kurt Weston, many long-term survivors use their art and activism to remind us of those early days of the pandemic.

Since June 5 is HIV and AIDS Long-term Survivors Awareness Day [read more about it in this month’s Feature article], I asked a few artists--many of them long-term survivors, themselves, also activists and allies--about the meaning of HLTSAD. And they shared riveting stories of loss, hope and triumph, as well as memorable artwork.

20

Eric Rhein Eric Rhein [A&U, December 2020] is a long-term survivor, visual artist, and the author of Lifelines, “a monograph-memoir.” www.ericrhein.com Being a long-term HIV survivor is intricate and complex, and for me the analogy of living through war resonates. Yes, there are joys, new territories, and dreams fulfilled, yet tempered by the scars…. Much goes into staying alive and moving forward. Long-term survivors hold a vast collective history. Telling our stories through art documents our experience and empowers our lives. Creativity is a life spring. There are times when I am feeling off-center, when I take note that I’m getting to experience life, when my friends who died of complications from AIDS do not. This is part of why I make works of art that honor my friends who are no longer alive, as in my AIDS memorial Leaves.

My late friend Robert Levithan was a long-term survivor himself, until his death in 2016. Robert was an inspiring, supportive presence for the HIV and

• JUNE 2022

a&ugallery

Top: Dark Daze Dark Nights, by Nancer LeMoins; Gouche Watercolor Stamps, 22x30", 2019 JUNE 2022 •

Bottom Left: Left Social Conscious III,

by Ronnie Queenan; Acrylic, 16x14", 2021

Bottom Right: I Will Breathe for You , by Nancer LeMoins; Mixed Media, 12x16", 2021

21

AIDS, and gay communities, as a psychotherapist, writer, and activist. It’s a privilege to be able to help keep his story alive. As I am now age sixty, I’m conscious that the time I have left to accomplish what I hope to do in this world is fleeting.

Perhaps this comes from being a long-term survivor.

Nancer LeMoins

Nancer LeMoins [A&U, August 2012], is a St. Louis native visual artist living in San Francisco for many years. Her testing HIV positive in 1986 has only inspired her to create art that “makes noise” and raises awareness about HIV and AIDS, and not only. https://visualaids.org/artists/nancer-lemoins

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I was given less than a year to live. I lost so many dear friends.... So, I feel that it is an honor to be alive. I recognize that so many of us didn’t get to survive, and I want my life to honor their spirits.

My job now, as a long-term survivor, is to hold everyone who needs love and support, those who are faltering and alone. We are all full of grace when we let ourselves be filled with it. We have so much to give, and the giving quickens the grace of all of us.

• JUNE 2022

a&ugallery

Top: The Slaves Heart Still Sings, by Grey Cross, mixed media, 4x6', 2015

12 x 18, ©2014,

Right: Finish Line, by Kathy MacKay, digital print, silver halide, 8x12", 2015

JUNE 2022 •

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and my friends alive, when most of us didn’t think we’d be around this long.

So that’s who I’m primarily thinking about on June 5—Doctor Dennis Karter, and the many other medical professionals like him who have worked tirelessly, cared for us, persevered, and stood by us for so many years, even when the odds seemed to be against us. There wouldn’t be survivors without them.

Ronnie Queenan

Ronnie Queenan [A&U, November 2013] is a longterm survivor and visual artist who creates healing art, which, in turn, helps raise HIV awareness. www.thequeenancollection.com The remembrance of June 5 is bittersweet for me.

After losing countless friends and family at the beginning of the AIDS crisis there is still deep sadness for me.

However, I am ever so grateful that myself and others are long-term survivors. I have always said that, as a world of humanity, we all have AIDS, meaning everyone on this planet knows someone who has been affected by or infected with this virus.

Grey Cross

Grey Cross, of Grey Cross Studios, is an artist and art activist living in New Orleans, Louisiana. He shares a powerful story that made him better understand “the long-term survivors of HIV.” www.immortalartist.com At the time, I understood HIV awareness, but not so much the responsibility of being a survivor. Yet, one of the models I had come in to pose for me in the studio changed my awareness completely.

When he first came to my studio to interview, he looked like someone out of the nineteenth century. A devout Jewish man in his late fifties, he had just come from the temple wearing a yarmulke on his nearly balding head, a traditional Bekishe robe and even the Rain - Self-Portrait, by Eric Rhein; gelatine silver print, 20x16", 1993 traditional Jewish sidelocks.

As we talked, several facts came to light. He was gay.

Miguel Cardenas His partner had died from AIDS during the worst time of the crisis. Soon after Miguel Cardenas, [A&U, March 2022] is a New Jersey visual artist and his partner’s passing, he was also diagnosed with AIDS. AZT had just become activist, and the co-founder of Jersey City Pride. available at the time, and he was in one of the original patient studies. Unlike Miguel Cardenas online: @miguelcardenasjc on Instagram; @miguelcardemany, he survived, but it was hell on his body. nasartanddesign on Facebook.

A few years later, he also was diagnosed with cancer and began aggressive therapy to combat it. He survived that, too. [Then] the cancer came back, and he Thinking of June 5, the Long-Term HIV and AIDS Survivors Awareness Day...I once again survived it. was never even aware there was such a day. Thinking about it, a barrage of Here was this amazing man, standing before me, who had survived death thoughts and feelings came to mind—sorrow for those we lost, a bit of [surviagainst overwhelming odds, and lived to talk about it and counsel others by not vors’] guilt as well, but also immense gratitude for having the good fortune of being afraid to tell his story. He said he had survived because he knew many still being here and having so many friends around me that are also survivors. before him hadn’t. He had their strength in him.

Then something very personal happened quite recently that brought my Then he took off his coat, unbuttoned his shirt, and revealed a tattoo on the thoughts into focus. I had my regularly scheduled quarterly doctor’s visit with right side of his body. Running from just below his right breast and stretching the same doctor I have had for over twenty-five years, and he reminded me all the way to his waist was a series of numbers. There were perhaps twenty-five that he was retiring and that this would be our last doctor/patient appointment lines of numbers. together. Again, I was overcome with sadness, joy, gratitude, and nostalgia, all at Then he said, “this is why I survived.” He pointed to the highest number the same time. We hugged, and I even cried a bit. I thanked him for his care, his and said, “this is the date my husband died from AIDS. And these,” his hand empathy, and friendship for so many years, and reminded him that he kept me brushed the rest of the numbers, “are the ID numbers assigned to every relative

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• JUNE 2022

my family lost to the concentration camps in World War II. This gives me my strength.”

He buttoned up his shirt looking me straight in the eye.

When he finished, I took up his hands in mine and pressed my cheek against them.

“When can you come for your shoot?” was all I could manage to say to him. The image [shared here] came from that shoot, and I think it sums up the emotion I had while working with him. Needless to say, he taught me more about being a survivor than anyone else I’d ever known. We all have a story of survival to tell. Few were as intense as his.

Kathy MacKay

Kathy MacKay [A&U, May 2015] is a former photojournalist, and co-author and photographer for Dying in Vein: Blood, Deception ... Justice. Her photography has appeared in newspapers and magazines around the country, as well as in two television documentaries. Currently, she is revising her memoir––a narrative that meshes the global story of contaminated blood products with her marriage to an HIV-positive hemophiliac. She is also working to preserve the stories of those affected by HIV and AIDS. www.kathymackaybooks.com Long-term survivor Barry Haarde was triumphant in so many ways. Like thousands of people with hemophilia in the eighties, he contracted HIV from a prescribed blood product.

Barry learned of his diagnosis while reading a form letter, leaving him distressed in the face of death. He watched his brother-in-law die. Then his brother. Both hemophiliacs. The AIDS hysteria forced Barry to hide his truth from the world. To pretend. To carry his pain alone.

Barry triumphed over AIDS. Decades later, he braved potential bigotry and HIV-shaming to reveal his truth. Turning to activism, he spoke to audiences about HIV and AIDS, and peddled across the country five times to raise money for hemophilia organizations. With daily social media posts, he honored his fallen hemophilia community members, including my husband, Dave, who died in 1997.

When I photographed Barry dipping his toes into the Atlantic Ocean and raising his bike toward the sky at the end of one of his cross-country treks, I witnessed triumphant Barry.

But long-term survival doesn’t guarantee a life free of the burdens of HIV. Life-extending medications wreak havoc on bodies. Survivors’ guilt grinds at the psyche. Sex is dangerous.

Barry never found the companionship he had longed for. In his journal, he wrote of one love interest––a vivacious dancer and singer. Fearing HIV would send her running, he ran instead.

Elegant Robert (Robert Levithan, 1951 - 2016), by Eric Rhein; (from Leaves an AIDS Memorial), wire and paper, 16x13x2", 2016

Barry killed himself four years ago. A gunshot wound to the head ended his concealed pain. June 5, the HIV and AIDS Long-Term Survivors Awareness Day, reminds me of the need for a system of emotional support for long-term survivors... because broad smiles and victory signs don’t always tell the whole story.

Oftentimes, the outward appearance of triumph doesn’t reflect the inner suffering. I think that this is what June 5 is also about, and that we still have work to do.

JUNE 2022 •

25

IMPORTANT FACTS FOR BIKTARVY®

This is only a brief summary of important information about BIKTARVY and does not replace talking to your healthcare provider about your condition and your treatment.

(bik-TAR-vee)

MOST IMPORTANT INFORMATION ABOUT BIKTARVY

POSSIBLE SIDE EFFECTS OF BIKTARVY

BIKTARVY may cause serious side effects, including:

BIKTARVY may cause serious side effects, including:  Those in the “Most Important Information About BIKTARVY” section.  Changes in your immune system. Your immune system may get stronger and begin to fight infections that may have been hidden in your body. Tell your healthcare provider if you have any new symptoms after you start taking BIKTARVY.  Kidney problems, including kidney failure. Your healthcare provider should do blood and urine tests to check your kidneys. If you develop new or worse kidney problems, they may tell you to stop taking BIKTARVY.  Too much lactic acid in your blood (lactic acidosis), which is a serious but rare medical emergency that can lead to death. Tell your healthcare provider right away if you get these symptoms: weakness or being more tired than usual, unusual muscle pain, being short of breath or fast breathing, stomach pain with nausea and vomiting, cold or blue hands and feet, feel dizzy or lightheaded, or a fast or abnormal heartbeat.  Severe liver problems, which in rare cases can lead to death. Tell your healthcare provider right away if you get these symptoms: skin or the white part of your eyes turns yellow, dark “tea-colored” urine, light-colored stools, loss of appetite for several days or longer, nausea, or stomach-area pain.  The most common side effects of BIKTARVY in clinical studies were diarrhea (6%), nausea (6%), and headache (5%).

 Worsening of hepatitis B (HBV) infection. Your

healthcare provider will test you for HBV. If you have both HIV-1 and HBV, your HBV may suddenly get worse if you stop taking BIKTARVY. Do not stop taking BIKTARVY without first talking to your healthcare provider, as they will need to check your health regularly for several months, and may give you HBV medicine.

ABOUT BIKTARVY BIKTARVY is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in adults and children who weigh at least 55 pounds. It can either be used in people who have never taken HIV-1 medicines before, or people who are replacing their current HIV-1 medicines and whose healthcare provider determines they meet certain requirements.

BIKTARVY does not cure HIV-1 or AIDS. HIV-1 is the virus that causes AIDS. Do NOT take BIKTARVY if you also take a medicine that contains:  dofetilide  rifampin  any other medicines to treat HIV-1

BEFORE TAKING BIKTARVY Tell your healthcare provider if you:  Have or have had any kidney or liver problems,

including hepatitis infection.  Have any other health problems.  Are pregnant or plan to become pregnant. It is not known if BIKTARVY can harm your unborn baby.

Tell your healthcare provider if you become pregnant while taking BIKTARVY.  Are breastfeeding (nursing) or plan to breastfeed.

Do not breastfeed. HIV-1 can be passed to the baby in breast milk.

Tell your healthcare provider about all the medicines you take:  Keep a list that includes all prescription and over-the-

counter medicines, antacids, laxatives, vitamins, and herbal supplements, and show it to your healthcare provider and pharmacist.

 BIKTARVY and other medicines may affect each other.

Ask your healthcare provider and pharmacist about medicines that interact with BIKTARVY, and ask if it is safe to take BIKTARVY with all your other medicines.

These are not all the possible side effects of BIKTARVY. Tell your healthcare provider right away if you have any new symptoms while taking BIKTARVY. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088.

Your healthcare provider will need to do tests to monitor your health before and during treatment with BIKTARVY.

HOW TO TAKE BIKTARVY Take BIKTARVY 1 time each day with or without food.

GET MORE INFORMATION  This is only a brief summary of important information

about BIKTARVY. Talk to your healthcare provider or pharmacist to learn more.

 Go to BIKTARVY.com or call 1-800-GILEAD-5  If you need help paying for your medicine,

visit BIKTARVY.com for program information.

BIKTARVY, the BIKTARVY Logo, GILEAD, the GILEAD Logo, GSI, and KEEP LOVING are trademarks of Gilead Sciences, Inc., or its related companies. Version date: February 2021 © 2022 Gilead Sciences, Inc. All rights reserved. US-BVYC-0008 01/22

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HIV TREATMENT * *Source: IQVIA NPA Weekly, 04/19/2019 through 05/28/2021.

D’EVA LIVING WITH HIV SINCE 2009 REAL BIKTARVY PATIENT

KEEP LOVING.

Because HIV doesn’t change who you are.

BIKTARVY® is a complete, 1-pill, once-a-day prescription medicine used to treat HIV-1 in certain adults. BIKTARVY does not cure HIV-1 or AIDS.

Ask your healthcare provider if BIKTARVY is right for you.

ONE SMALL PILL, ONCE A DAY Pill shown not actual size (15 mm x 8 mm) | Featured patient compensated by Gilead.

Please see Important Facts about BIKTARVY, including important warnings, on the previous page and visit BIKTARVY.com.

Scan to see D’Eva’s story.

preserving

history AWARD- WINNING FILMMAKER AND ACTIVIST WOLFGANG BUSCH USES ART AND ACTIVISM TO RECORD HIV AND AIDS HISTORY Text and Photos by Alina Oswald

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• JUNE 2022

JUNE 2022 •

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M

any might describe Wolfgang Busch as a dream chaser; others, as a kind and patient mentor; as an artist and activist whose work always comes from the heart. Busch’s name is synonym with documentaries preserving the history of the LGBTQ+ community, and the HIV and AIDS pandemic. Examples include How Do I Look (2006), an award-winning documentary capturing an intimate, multi-layered and real-life portrait of the ballroom community; and A Flow Affair (2010), exploring the evolution of the art of flagging (brief flagging performances can be seen at Pride Marches across the country).

Wolfgang Busch has won numerous, prestigious awards for his art and activism--such as the 2015 MLK Humanitarian Award “for his social and artistic activism for the Black and Hispanic LGBTQ+ Ballroom community,” and the A-List New York 2021 Award honoring remarkable men who “make a difference in their work and […] communities.”

Busch has also served on the Producers Committee at Manhattan Neighborhood Network (MNN) and as Vice President of the Metropolitan Community Athletic Association NY (MCAANY). For ten years, he produced New York New Rock, a weekly TV show “highlighting cultural and educational aspects of various communities.”

In 2006, Busch founded Art From the Heart Films, which is best known for its "edu-tainment and docu-feature films promoting trend-setters in under-served communities" and highlighting the LGBTQ+ community, as well as preserving the HIV and AIDS history.

Why Art From the Heart?

“Because to me, art-making is

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a natural artistic progression.

And if it doesn’t come from the heart, then it’s not natural,” Busch explains. He adds that Art From the Heart also protects artists from outside corruption and manipulation.

I met Wolfgang Busch in 2006, at a promotional event for his then-new documentary How Do I Look, which I ended up reviewing for A&U. Recently, we’ve reconnected on Zoom and reminisced about common histories, and the importance of using activism and art to preserve the history of HIV and AIDS, COVID, and much more.

Born and raised in Heppenheim, Germany, Wolfgang Busch grew up in an upper-middle-class family. He and his brother were raised Catholic, and were altar boys in the church. His mother was a homemaker, and his father was the mayor’s "right-hand man.”

“My father was a second-generation soccer player, and the president of the local soccer team,” Busch says, enthusiastically explaining the role soccer has in his homeland. “I wanted to follow in his footsteps and had to make straight A’s to be able to join the local team.”

When he was just shy of twenty, he had his “first homosexual experience.” He recalls, “I didn't find it excitng. I didn’t know anything about sex. And the only thing I’d been told about homosexuality was that it was a bad thing. My religion rejected it, and I was lost, confused, uncomfortable, and ashamed, thinking that there was something wrong with me.”

So, he turned to spirituality for guidance. And, over time, he started feeling more and more comfortable with himself, and more confident in who he was. ...Confident enough that he decided to come out to his family and friends. “I couldn’t live with the guilt of not being honest to • JUNE 2022

APRIL 2022• • MAY 2022

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them anymore. But I couldn’t tell them in person, either. So, I wrote a letter and left it in the kitchen, so that my mother would find it.” She did find and read that letter, and he refers to the conversation that followed as “a turning point” in his life.

Also, at the time, Busch was studying to become a dental technician, and going to school in Frankfurt. That’s when he first heard about gay bars.

After a while, he moved out of his parents' house and got a place of his own.

And he was still traveling to Frankfurt on Saturday nights to party in the rock clubs and gay discos.

Yet, soon, he found himself at a crossroads. He realized that, while he loved music and dancing, he had to figure out his future. Was he to move to Frankfurt, to the “party town,” or go to Mannheim and start a career in the music industry?

And he decided that his career was more important.

Also, around that time, Busch began noticing that his friends were getting sick with a myriad of “strange diseases.” And he started thinking that something was about to happen, something that would have "no happy ending."

As he was soon to realize, those were the pre-AIDS days announcing the arrival of a virus that was about to wipe out entire communities around the world. “By then, they didn’t call it AIDS, they called it [gay] cancer,” Busch says, “and my people were dropping dead and we didn’t even know why.

Soon, my best friend, someone I was looking up to, was no longer around to guide me. I was completely lost.” Busch pauses, and then adds, “...And today the AIDS pandemic is still with us.”

At the time, in the German gay community, it was fashionable to be friends with American soldiers, because they knew how to party, and their personalities attracted many Germans. “The [Americans'] mentality was ‘hello, how are you, I love you,’ which was so very strange to us, Germans, because we were raised just the opposite,” he explains.

“I’d never heard ‘I love you’ at home, yet the Americans were using it like it was some type of candy given out to children. It was very strange to me, in the beginning, to learn about the American culture.”

In 1976, when he was twenty-one, Busch visited New York City for the first time, to see his aunt in Bayside, New York. “I was young and very naïve,” he recalls with a faint smile. “My American friends had told me about Christopher Street. I was very shy and afraid to go there at night, so I made a trip during the day to scout out the place and make sure I was comfortable going there at night.”

He ended up at a bar, with his camera around his chest and looking "like a typical German tourist," he recalls. "Little did I know that I was fresh young meat in town and before I knew it, I had five cans of beer in front of me. People were buying me drinks, and I didn’t know how to react. I got so scared that I ran out of the bar.”

While in the city, Busch also sneaked into the famous Studio 54. “There was a huge crowd outside, and I thought I’d never get in.” He smiles at the memory. “But for some reason, I turned around and saw a stretch limo pulling up. A few people came out of the limo and I saw the doorman waving

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them through the crowd. And I thought to myself, let me just follow the last person and pretend I belong to this party. Before I knew it, I was standing at the cashier to pay my admission to go to the world’s famous Studio 54. It was a memorable moment, and I’m so grateful I have this experience.”

After following his military friends all around the country, Busch fell in love with America. Meanwhile, in Germany, the dentist he worked for had closed his practice. His sound engineer career didn’t take him where he wanted to go, and because of a back injury from a motorcycle accident, his soccer-playing days were over.

And so, in 1982, Busch decided to move to America, to live in Virginia with his boyfriend. Yet, when he landed, his boyfriend told him that they weren’t together anymore. Busch was devastated. This was not the welcome he was hoping for.

He also realized that he had to find a job. He eventually got hired to tour in the South with a band. But because they had a Black bass player, not too many bars were willing to book them. Hence, the band had to break up.

The experience was the first to inspire him to become an activist. It also left him jobless.

“I ended up taking the bus to Bayside, New York, to live with my eightytwo-year-old aunt,” Busch says. “I had twenty dollars in my pocket and right away I looked for a dental technician job to support myself and take care of my aunt. And even when I found [a place in the city] , I [continued to] take care of her until she passed away.”

One day he saw an ad in the Village Voice. The Musicians’ Union was looking for volunteers. He decided to respond to that ad and soon became part of the rock R&B committee producing seminars and showcases for local bands. That’s when he started noticing stereotyping of female musicians, and discrimination against Black and Hispanic musicians. It marked the beginning of his changing the New York City musical landscape as an artist and activist.

Busch has worked at clubs across New York City, including at the famous Limelight, and also Danceteria, and The Tunnel. It was the start of his long career in the entertainment industry. Soon, he became known as “the camera guy,” always in bars, filming, capturing, and preserving history.

• JUNE 2022

“So, I said to myself, OK, who in the gay community has been exploited the most and could benefit from my experience the most? And the ballroom community came to mind. While it has been the most exploited, I don’t think another community brings more talent to the table. And so, I became curious about the ballroom community and how they set new trends in fashion, music, and dance.” Hence, his motivation to record its history, including related to HIV and AIDS, in his documentaries.

As we chit chat about preserving history through art, I recall yet another one of his projects—the Rockumentary project. “Ah, that is a mouthful,” Busch says, laughing. “So, you know, first we had demo tapes, and then records, and then CDs,” he reminds, “I’ve digitized them all, trying to preserve the performances, the history of those bands, and the oral history of the behind-the-scenes people.” And that’s how it started, his documentary about the history of rock and roll.

Busch’s achievements also include the Pink Pong Foundation, the first mostly gay, ping pong group in the country. “When I lived in Brooklyn with a boyfriend from Brazil, we discovered that we both ‘had a thing’ for ping pong (table tennis),” he explains. And so, they decided to start playing ping pong in Brooklyn. Through word of mouth, they ended up with several people who’d get together and play once a week. "It was more social than competitive," he adds.

Then, the Gay Games were about to take place in Germany. “They have different divisions,” Busch says, “and a few of us decided to participate. We signed up for the Recreation Division, and we came back with several medals. I won two gold and one bronze, and that was very surprising to me.”

Using art to document and preserve history is in Wolfgang Busch’s DNA. “The HIV and AIDS pandemic has left such a vacuum for many of us. And if we don’t document [the pandemic], at the time when we can, all these stories get lost,” Busch says. “I’ve experienced this kind of loss. I've lost many of my friends and leaders. And then I asked myself, who was I to follow, who was going to guide me?”

Nowadays, people are looking up to Wolfgang Busch to guide them. He’s an inspiring artist, activist, and mentor. “But the transition from follower to leader was not voluntary,” he points out.

“We still cannot comprehend how much we’ve lost because of HIV and AIDS,” he adds, noting that “even with COVID, people are already starting to forget” and mentions the “similarities in people’s behaviors” in response to the two pandemics. “You want to be on the proactive side of the pandemic,” he adds.

Using art to document and preserve history is in Wolfgang Busch’s DNA.

In 1987, while "hanging" at the Tracks club, Busch noticed that all of a sudden, they started "something called a ball. Experiencing it—the voguing and dancing—was fascinating," Busch says. "I remember thinking that maybe one day I could work with this community. Then, in 1989, I met Kevin Omni [Founder of the House of Omni, ballroom historian, and activist] at a fundraising event.

“Kevin [Omni] and I ended up working together, and became friends, and then he introduced me to the ballroom community. I think it was [in the mid-nineties] when he suggested that maybe I should work on a documentary, a follow-up to Paris Is Burning”... hence, the idea for How Do I Look.

“At that point, I’d been a booking agent and working with bands for a while,” Busch comments. “But despite all my experience and all the big guns in the industry describing me as ‘refreshing,’ I couldn’t get a break. So, it was clear to me that I wasn’t going to make any movies in Hollywood.

JUNE 2022 •

When I ask about upcoming awards, Wolfgang Busch laughs. “Not that I know of. But, you know, it’s always appreciated when people acknowledge your work. And receiving all these awards doesn’t pay the rent or mortgage but reminds me of what I do. Activism is a labor of love, and I can’t help myself.”

To find out more about Wolfgang Busch and his work, please visit online at www.artfromtheheartnyc.org.

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NONFICTION 34

Dark Angel

by Alina Oswald

An Excerpt from Journeys Through Darkness: A Biography Photographs by Kurt Weston AIDS has remained what the photographer calls "a strange disease" that through the years has touched people's lives in "bizarre" ways. As an artist, Kurt Weston has used his work to express his vision of the "disease," of the pandemic.

In that sense, Dark Angel may best capture Weston's first intimate experience with HIV and AIDS. The photograph is one of his first to be inspired by Angels in America, the play he went to see when it came to Chicago.

The concept of angels and the symbolism of funeral rituals concur in the artist's work, revisiting old ideas about life, death, and the vast Beyond. In Western monotheistic religions, angels are pictured as God's messengers, living among humans and in the transitional space between Heaven and

Earth. They can be guardian angels helping humans throughout their physical life, or they can be angels of death, messengers of the coming Death.

Kurt Weston's Dark Angel is an angel of Death. He is also an angel of AIDS, which, at the time, was a death sentence. The image shows an implied representation of the angel's wings, which are the shadows from where he's peering out. Weston's angel appears out of the shadows with his wings spread wide.

Although the photograph is a mixture of poor light and shadows, the angel's face is illuminated because, even if AIDS forecasted a terrifying death, to the artist, there's also something transformative about the disease. Throughout the years, AIDS has transformed

• JUNE 2022

many people's concepts about death and dying and how people celebrate their lives and honor their dead. [Hence, the funeral scene in the 2003 HIV mini-series, Angels in America.]

Before the arrival of the AIDS epidemic, many envisioned funerals as horrifying events where people would mourn and sob over an open casket. As the epidemic started to decimate the gay community and people started losing so many friends to the disease, funerals became more celebrations of life.

Weston's Dark Angel symbolizes an angelic figure composed of a play of the elements often used in the artist's work—darkness and light—to manifest the subtle interaction between what's real and what is not. This interaction further transposes between the dark angel and the white cat that doesn't seem afraid of the angel but rather is somewhat interested in his stake. The artist explains that the cat was "a happy mistake," while talking about the technical part involved in creating the image.

The photographer used a view camera, a large camera that requires a piece of film, called sheet film, inserted in a film holder. He had the subject standing as he appears in the photograph, holding on to his stake.

The room was completely dark as the artist started walking around with a handheld flash, popping the flash off at different angles to create other shadows, thus painting (with light and shadows) the Dark Angel's wings.

Unbeknownst to Weston, while he was moving around and working on his photograph, his cat, Che (from Che Guevara), walked inside the room and was accidentally illuminated when the flash came off. It wasn't until during the developing process that the photographer discovered the cat, which wasn't supposed to be in the picture, staring straight at the angel's stake.

Although Kurt Weston created the Dark Angel photograph in total darkness, he also injected light into the image to illuminate the angel's face. The light symbolizes hope and life's triumph peering through the immense darkness of the (then) terrifying pandemic.

JUNE 2022 •

35

Stories from the Edge of a Pandemic LONG-TERM SURVIVORS, ACTIVISTS, AND ALLIES REMEMBER THE EARLY DAYS OF THE HIV AND AIDS PANDEMIC

by Alina Oswald

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• JUNE 2022

JUNE 2022 •

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J

une 5, 1981, marks the official start of what is now known as the HIV and AIDS pandemic. That’s because it was on that day that the Morbidity and Mortality Weekly Report (MMWR) first mentioned a then-mysterious disease that was taking the lives of young gay men.

For almost a decade now, June 5 has also been known as the HIV and AIDS Long-Term Survivors Awareness Day, or HLTSAD. Founded in 2014 by long-term survivor and activist Ted Anderson, HLTSAD celebrates "the strength and resilience of people living longest with HIV and AIDS, while highlighting current challenges”

and, thus, helping improve long-term survivors’ quality of life.

“HLTSAD is not a one-day event. It is a year-long campaign,” the HLTSAD website also mentions.

Almost a quarter of the people living with HIV in the U.S. are long-term survivors. That’s about three hundred thousand people.

And all of them--long-term survivors, lifetime activists, and also their allies--have stories to share. Here are some of their powerful, riveting stories of loss, of struggle, and also triumph over the virus.

BOB BOWERS

Bob Bowers [A&U, December 2021], a.k.a. One Tough Pirate, is a long-term HIV and AIDS survivor, activist and educator, and the founder of HIVictorious.Inc. https://www.bobbowers. online/ On June 5, 1981—the day that the disease, which would later become known as AIDS, was reported in the Morbidity and Mortality Weekly Report (MMWR)—I was living in a city of under ten thousand people, in Oregon. I was preparing for my high school graduation and future in the Navy.

In 1983, I had just moved to Los Angeles and shared a needle with my girlfriend to inject crystal meth. I was a young heterosexual man, and infection was the furthest thing from my reality. However, due to that one careless act, I too was infected with the deadly virus that was later named HIV. Shortly thereafter, I received a “terminal” diagnosis of AIDS. Kelsey Louie the odds of surviving, after losing countless friends from After beating all walks of life to HIV and AIDS, I created my own nonprofit and became a youth educator. As an educator, I spent many years talking to audiences.

While we’ve made incredible advances in the fight against HIV and AIDS, living with the virus is still a chronic life-long [task] and not for the faint of heart.

This is my thirty-ninth year of living with HIV. And while my virus remains undetectable, thirty-plus years of medications (at one point sixty-five pills a day) have taken a toll on my body.

Overall, my life is good. I’m one of the lucky ones to have survived. I have a loving life partner, Nita, and a beautiful service dog, Sir Duke. Though I’m now officially retired, I remain committed to living well, educating others, and doing my small part to ensure a world free from HIV. The fight is far from over.

June 5 is a stark reminder that more than forty-one years into the pandemic, we still have no vaccine, no cure, and that infections, stigma, fear, and misinformation persist. The date will forever be a marker of my survival with the disease, and a reminder of the worst pandemic to hit my generation. It is a constant reminder that HIV can still infect anyone.

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VICTORIA NOE

Victoria Noe [A&U, July 2019] is an ACT UP activist, public speaker, and author of books like Friend Grief series and Fag Hags, Divas and Moms: The Legacy of Straight Women in the AIDS Community. Her new book, Friend Grief and COVID: Pandemic Stories, will be available in 2022. www.victorianoe.com

When I think of HIV Long-Term Survivors Awareness Day, I think of my friends. I think of the ones who did not have the privilege to be long-term survivors because they didn’t live long enough for effective drugs to help them survive. Every day I think of the ones who are still around, a very diverse group: people born with HIV, now in their thirties; men and women in their fifties and older who face the normal daily challenges of aging compounded by the effects of decades of often toxic drugs and HIV, itself. I see them struggling with facing their second pandemic (COVID). And though Jeff Berry from TPAN convinced me that I’m an LTS, too, (even though I’m HIV-negative) because I was “there” at the beginning, I don’t count myself as a true member of that community.

I see my friends’ isolation, and their justified anger at being ignored not just by society in general, but by a community that often prefers to ignore any reminders of the early days of the epidemic. Ageism is something not talked about enough around HIV and AIDS, and long-term survivors face that every [single] day. We owe them so much more.

• JUNE 2022

Steve Hayes [A&U, April 2017] is an actor and writer living in New York City. Check out his show Tired Old Queen at the Movies, by visiting www.youtube.com/user/ STEVEHAYESTOQ. Follow Steve Hayes on Twitter @ SteveHayesTOQ.

Two years ago, in August, during the height of the COVID pandemic, I lost Stephen Addona, one of my dearest friends of many years.

We had grown up in small towns in Upstate New York and gone to college together.

We’re both gay, had essentially “come out” together, and left to find and explore gay life in New York City in the seventies. Over the years, our paths took us in different directions, but we always stayed in touch, told each other of our dreams and accomplishments, and laughed at each other’s adventures. By the mid-eighties, our friends started dying, and AIDS took its inevitable toll. My friend contracted the virus in the early nineties, but he never lost his drive, nor his refusal to give in. He was determined never to let AIDS keep him from living life to the fullest.

To that end, he helped organize a support group for long-term AIDS survivors, called “Hope and Help” in Central Florida and was the founder and program director, co-facilitator, and chief blogger for RE-START, which “helped educate on living well with HIV, combat isolationism, reward leadership among its members and dismantle stigma in all communities.” He spoke in Washington at the National AIDS Conference and was listed by POZ Magazine as “one of the 100 Most Influential people over the age of 50, making significant contributions to end the HIV epidemic.”

A brave man. A remarkable individual and one of the thousands who continue the good fight, who know that the end of HIV and AIDS will come only when the virus has ceased to be a threat to anyone of any race, age, or orientation, and is remembered by future generations as a dark era of history, long past and thankfully over.

Here’s to all those who survive, teach, continue the fight and live productive lives with and despite HIV! Here’s to the heroes!

TONY BEALL

Tony Beall [A&U, March 2013] is the President and CEO of Mister Nonprofit Consultancy, which in turn is the recipient of the 2012 Small Business of the Year Award presented by the Greater Fort Lauderdale Chamber of Commerce.

For me, June 5, HIV Long-Term Survivors Awareness Day, is an opportunity to honor the change-makers, advocates, and NGOs that fought for the recognition and support needed for there to be any survivors of HIV. It is also an opportunity to ignite hope in those who are newly diagnosed and provide a platform for long-term survivors to share their unique stories of challenges and triumphs.

JUNE 2022 •

ROBERTO ORDONEZ HOYO

Roberto Ordonez Hoyo (Rob Ordonez [A&U, January 2017]) is a photographer and actor living in the New York City area. https://visualaids.org/ artists/rob-ordonez http://robertordonez. yolasite.com/

As an HIV long-term survivor, I feel extremely blessed to be alive, healthy, and living my dreams. I contracted HIV in 1996, and back then, life expectancy was five years, so I ran away from home (Mexico) to New York City in 1999 to live the rest of my life to the fullest.

To my surprise, today, I’m fifty years old, healthy, fulfilled, and loved.

So, this June 5, HIV and AIDS Long-Term Survivors Awareness Day, I thank God, life, my doctor, and the medications for keeping me alive, happy, and healthy. So, there are happy endings after all….

Tara K. (a.k.a. Tara Kulbatski MU) Tara K. [A&U, June 2016] is a performing artist, advocate, and ally. Catch up with her latest shows by visiting online at https://www.facebook.com/RazzleDazzle817/

I admit that I did not realize that HIV Long-Term Survivors Awareness Day was a thing, so I had to look it up. I had said in my [2016] interview that I was amazed at all the advances that have been made toward HIV and AIDS, and how people are living longer lives and in some cases are practically HIV-free.

Something that had occurred to me the other night, while sitting up at 3 a.m. waiting for my two-year-old to go to sleep, besides how much I wished that his grandmother was alive to meet him, was that so much of what we hear about the AIDS pandemic is from the scope of men, which, granted, it makes sense since they had the largest amount of deaths, but it led me to look up what famous women died of AIDS. There was only one name I recognized….

The theme of this year’s awareness day is quality of life. To improve the quality of life of those who have been living with HIV since 1996, two years after my mother died from AIDS. My mother always tried to reach out to people that needed help, and even though it was too late for her, I’m sure she would be happy that there are so many amazing people getting to live longer lives. I look forward to telling my son more about her when he is old enough to understand. For now, she is his Angel Grandma Janine that he gets to see in pictures on our fireplace.

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Photos by Alina Oswald, except Bob Bowers photo, by Nita Costello

STEVE HAYES:

NANCY DUNCAN

Nancy Duncan [A&U, May 2017] is a long-term survivor and activist, and New York State certified peer worker.

I am grateful for surviving, and even thriving as I’m going on my thirty-seventh year of living with HIV. This time I’ve been given has allowed me the opportunity to see my son grow into an amazing forty-two-yearold man and has afforded me a career as an NYS Certified Peer Worker to help educate others. I still hold onto memories and a sense of deep sadness for those who did not survive the complications of AIDS and wish they could still be here with us. I’m glad for this day, because it brings awareness to the many of us who are still here striving to stay healthy and maintain a decent quality of life while aging with HIV, and it’s not been easy! I hope that all of the strong and beautiful people in our community will be able to seek the services and support they require to stay healthy and know they are not alone in this long bittersweet journey of the HIV long-term survivor.

REV. YOLANDA

[A&U, March 2019] is an award-winning performing artist and long-term survivor, who offers a “course in miracles” and teaches about trans awareness, and HIV and AIDS activism Rev. Yolanda’s Church With A 2 Drink Minimum! A Trans-Tastic Interfaith, Inter-spiritual, God Optional Celebration of Life: www.yolanda.net/church I contracted HIV in the eighties, and was diagnosed in 1996, the year that the meds were released to the public. I didn’t expect to live very long after seeing so many people die. However, I began to follow my doctor’s prescribed meds protocol and hoped for the best. Since I wasn’t sure I was going to live much longer, I took the opportunity to live out loud. I began to perform as Yolanda and embrace health, food-as-medicine, my spiritual awakening (I began to read A Course In Miracles), and writing songs about my journey. I created a life of mental, spiritual, and physical health that led me to the love of my life—Glen Ganaway—and to interfaith seminary where I graduated as Rev. Yolanda. I also began my music ministry known as “Church With A 2 Drink Minimum,” which continues to this day. My life is better now than I ever could have imagined in the eighties. Thanks to meds and programs in New York City that support persons living with HIV, I now do feel seen and heard and supported in my journey to old age. I am now inspired to live to be a hundred!

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ANTHONY JOHNSON

Anthony Johnson [A&U, February 2012] is a thirty-year HIV long-term survivor, advocate, volunteer, and a member of the National HIV and Aging Advocacy Network, the NHAAN Membership Committee, and NHAAN LGBTQ Long-term Survivors Committee.

I often tell people I feel like a dinosaur, like a creature forgotten in time. However, unlike a dinosaur, I am an HIV long-term survivor. Many of us, survivors, have fought for care and services for those living with and dying from HIV and AIDS, and also for our own needs and our own voice in the conversation.

Yes, we’ve come a long way, and I’m truly grateful for it. However, let’s not forget how we got here, let’s not forget those we’ve lost along the way. We need compassion, love, and care, too. We need HIV services and programs that grow with us, and that are specific to our unique physical, emotional, and spiritual needs.

BRANDON LAWRENCEMARTIN LEE

Brandon Lawrence-Martin Lee, a.k.a. “The Orange Warrior” [A&U, March 2018] has worked in public health for twelve years, focusing on LGBTQIA+, PLWHA and under-served communities. When not helping in the hospital, he loves playing video games on Facebook Gaming (Theebucketlistgamer).

Also, follow Brandon Lawrence-Martin Lee on Twitter @PoohPlays.

I write this at work, where I'm surrounded by patients whose journeys with HIV have been longer than the history of this magazine or even longer than I've been alive. Yet, here they are, filled with joy, telling us about their amazing week, recipes they're going to be trying tonight, grandchildren who are graduating, and so much more.

Yes, some days are worse than others. But after all this time, the virus hasn't taken away their penchant for happiness. A crisis that felt like ages ago, an epidemic that counted these people out in three months wouldn't have been able to imagine the same people surviving for three decades, couldn't fathom some of them thriving in thirty or forty years later.

People are not living with HIV. HIV is living with them.

• JUNE 2022

Brian had his HIV under control with medication. But smoking with HIV caused him to have serious health problems, including a stroke, a blood clot in his lungs and surgery on an artery in his neck. Smoking makes living with HIV much worse. You can quit.

CALL 1-800-QUIT-NOW.

#CDCTips

HIV alone didn’t cause the clogged artery in my neck.

Smoking with HIV did.

Brian, age 45, California

TWO WAYS TREATMENT CAN HELP STOP HIV.

Starting HIV treatment as soon as possible and sticking with it every day helps you get to and stay undetectable. That means there is so little virus in the blood that a test can’t measure it.

And that’s a good thing, because:

BEING UNDETECTABLE HELPS STOP THE DAMAGE HIV CAUSES.

CURRENT RESEARCH SHOWS GETTING TO AND STAYING UNDETECTABLE PREVENTS THE SPREAD OF HIV THROUGH SEX.

There’s no cure for HIV, but if you stick with treatment, you can protect yourself and the people you care about. Talk to a healthcare provider and watch It’s Called Treatment as Prevention at YouTube.com/HelpStopTheVirus

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