A&U August 2021 by A&U: America's AIDS Magazine

art & understanding for 30 years

Jessica Tanzer Spencer Reece The Lazarus Lotteries’ Carly McCarthy & Malcom Gregory Scott Brian Malloy

Chris Hewitt Award Winners David Mohan Carolyn O’Donnell Paul William Kruse Christina Robertson

sarah

SCHULMAN

In Let the Record Show, the Writer & Activist Traces the Trials & Triumphs of ACT UP New York

AUGUST 2021 | ISSUE 322

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, KEEP BEING YOU, and LOVE WHAT’S INSIDE are trademarks of Gilead Sciences, Inc., or its related companies. Version date: February 2021 © 2021 Gilead Sciences, Inc. All rights reserved. BVYC0467 06/21

REAL

BIKTARVY

PAT I E N T S

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. Watch their stories at BIKTARVY.com Featured patients compensated by Gilead.

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

Contents

August

2021

FEATURE

COVER STORY

Poet Spencer Reece on His New Memoir, The Secret Gospel of Mark

FEATURE

A&U's Jay Vithalani Talks to Sarah Schulman About Her History of ACT UP New York, Let the Record Show

Malcom Gregory Scott & Carly McCarthy Launch a New Doc

FEATURES

26 A Survivor's Story Writer Brian Malloy on His New Novel, After Francesco 34 Fruit of Our Labor Read the Eighth Annual Christopher Hewitt Award Winners: Christina Robertson, Paul William Kruse, David Mohan & Carolyn O'Donnell

DEPARTMENTS 4 Frontdesk 6 Digital Footprints 10 NewsBreak

cover photo by Stephen Churchill Downes

viewfinder 8 12

Bright Lights, Small City Ruby's Rap

GALLERY

Photographer Jessica Tanzer on Her Life's Work of Dispelling Fear Through Beauty

lifeguide

44 The Culture of AIDS 47 Lifelines 48 Years of Living Precariously

Frontdesk From the Editor

Everything Counts

s we have looked back this summer at the start of the known AIDS epidemic, we have tried to be nuanced. Newspaper reports that tout “forty years of AIDS” are not exactly accurate. Yes, in North America, the CDC reported on what would become known as AIDS in1981 for the first time, but researchers think the modern epidemic started in the mid to late seventies. Science would eventually learn that HIV goes back farther than that. About 100 years it is thought. When we look back, we have a chance to reassess and correct the record if needed. While history is open to revision, what we don’t need are egregiously false accounts, as interviewee Brian Malloy reminds us in this issue. Remember when, a few years ago, former Presidential candidate and Secretary of State Hillary Clinton praised Nancy Reagan for being a champion of AIDS awareness? The collective gasp from the HIV/AIDS community was heard around the world and many rushed to present a documented account of Nancy’s missed opportunities to support people living with HIV/AIDS and her long, negligent silences. What we do need are more comprehensive histories from multiple sources. That’s what this month’s cover story subject, Sarah Schulman, has accomplished in her tome, Let the Record Show, which boasts interviews with ACT UP activists. Interviewed by Nonfiction Editor Jay Vithalani and photographed by Stephen Churchill Downes, Schulman talks about her approach by way of addressing some criticism of her work: “What oral history ‘proves’ is that this is what people say about their experience. It doesn’t even prove that this is really what they think about their experience. So, it’s simply a record of what they say about it. And it’s nothing more than that. But when it’s critical mass of——in this case I think there are 140 people that I use in the text——you really start to see dimensions and shapes and patterns. And that’s revealing, it’s larger than anything one person says. You don’t fact-check oral history. Because it’s not fact. It’s only the fact that they said that. So there are some people out there who don’t understand that oral histories have been used since Howard Zinn, for fifty years people have used oral history, it’s not controversial.”

History relies on critical analysis and in doing so becomes a creative act. Photographer Jessica Tanzer, interviewed by Managing Editor Chael Needle, has documented not only life and love during the 1990s ACT UP and Queer Nation era in San Francisco, but also created some of the most stunning and iconic images of woman-centered desire, in part to displace homophobic fear with beauty and sex-positivity. And in the creative writing department, this issue offers interviews with novelist Brian Malloy about his new book, After Francesco (conducted by Senior Editor Hank Trout) and Poetry Editor Philip F. Clark talks with poet Spencer Reece about his new memoir, The Secret Gospel of Mark. Both revisit the past with empathetic reflectiveness and affirmations of the importance of paying tribute to those who have helped us survive one more day on this planet. And don’t forget to check out this year’s winners of the eighth annual Christopher Hewitt Awards: Carolyn O’Donnell, David Mohan, Paul William Kruse, and Christina Robertson. In the categories of poetry, fiction, drama and nonfiction, all offer complex meditations on the realities of HIV/AIDS. History is best when it’s multimodal. One strategy to get a sense of what happened in the past and why it happened is to read different nonfiction accounts, but also consume various forms of history: oral narratives, art, creative writing, photos, diaries, technical documents, social media posts, magazines, and so on. Remember, too, that history is not “out there,” but rather within our hearts and minds and bodies. Never hesitate to tell your story——what happened forty years ago or what happened yesterday. Everything counts.

DAVID WAGGONER

AMERICA’S AIDS MAGAZINE issue 322 vol. 30 no. 8 August 2021 editorial offices: (518) 992-2232 fax: (518) 436-5354 Editor in Chief & Publisher David Waggoner Managing Editor: Chael Needle Senior Editors: Dann Dulin, Hank Trout 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, Jeannie Wraight Art Director: Timothy J. Haines Contributing Photographers: Davidd Batalon, Tom Bianchi, Holly Clark, Stephen Churchill Downes, Greg Gorman, Francis Hills, Tom McGovern, Annie Tritt, Tommy Wu National Advertising Director: Harold Burdick, Jr. Sales & Marketing: David L. Bonitatibus Advertising Sales Office: (518) 992-2232 National Advertising Representative: Rivendell Media (212) 242-6863 Subscription Info: (518) 992-2232 Circulation Manager: Robert Schelepanow Bookkeeper: Richard Garcia Board of Directors President: David Waggoner Vice President: Harold Burdick, Jr. Secretary: Richard Garcia 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 A&U (ISSN 1074-0872) is published by Art & Understanding, Inc., 25 Monroe St., Suite 205, Albany, NY 12210-2743, USA. For A&U advertising information please call 518-992-2232; for subscriptions and address changes please call 518-992-2232; for letters to the editor and unsolicited manuscripts write A&U Magazine, 25 Monroe Street, Albany, New York 12210; fax 518-436-5354; 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, 25 Monroe Street, Suite 205, Albany NY 12210-2743, USA

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Digital Digital D ig igi git ita taal Footprints Fo Footprints ootpprint in nts ts art & understanding for 30 years

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Venita Ray

Stephen Hart LaDeia Joyce Poetry by

Robert Carr & Shaun Hill

Comics & HIV

tony

ENOS

The Singer & Performer Empowers the HIV Community Through Music

Managing Editor Chael Needle’s cover story interview with Tony Enos was a hit, with readers helping share the singer’s message of HIV empowerment.

JULY 2021 | ISSUE 321

Photo by Holly Clark

mostloved

Crocus bulbs, a locket, a lock of hair——readers responded to the haunting imagery in Robert Carr’s poem “Buried Memories.”

mostshared LáDeia Joyce uses her skills set to help empower Black women living with HIV, and her interview with A&U’s Chip Alfred proved to be popular with readers. Photo by Ariel Aleks Antonío

@AmericasAIDSMagazine

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@au_americas_aids_magazine • AUGUST 2021

BRIGHT LIGHTS, SMALL CITY by John Francis Leonard

UP IN SMOKE

Cannabis Can Be Medicinal, but Would It Work for Me?

orn in ’69, I consider myself a child of the seventies as well as the eighties. Popular culture informed my childhood, for the good, as well as the bad. I always found drugs, as ugly as my addictions would one day become, to be sophisticated and glamorous. I was preternaturally attuned to the goings-on of the men in New York and San Francisco I longed to be. I made an early promise to myself that I would follow in their glamorous footsteps to the dance floor. Fast forward to the Tunnel in 1987 and watch me bent over in a bathroom stall with a straw up my nose. Fools rush in…indeed. No drug was a bigger part of everyday life as often as pot was in the seventies. It’s use permeated popular culture and, unlike the heavier fare imbued by the crowd at Studio 54, it was as much a part of small-town life as it was in the big cities. All my adult relatives smoked, as did my parents. I remember vividly, falling asleep in my aunt and uncle’s bed while the smell of pot permeated the air. The adults downstairs playing cards into the night were partaking as I was getting my earliest contact high. I had a brief run in with pot at thirteen when caught smoking it with friends and did smoke it often in my college years. At some point, my experiences under its influence became anxiety-ridden. Frankly, it made me think too much while what I required in a drug was an ability to make me not think. During my long years of partying and recreational use, I rarely even ran across it. The popular wisdom amongst my gay male friends was why would any sensible gay man want to do a drug that makes you hungry and tired? It still had its disciples, however, and I’ve always found pot enthusiasts to be much like conservative Christians;

you won’t be saved unless you convert. I tried it rarely and always with the same disastrous results, ennui and paranoia. I’ve been drug-free pretty much ten years now. The first step was giving up recreational drugs; that was the easy part. The more challenging part was coming off all of the prescription narcotics that doctors had been prescribing for me for years. Now, to be honest, I’m not in a 12-step program and I didn’t go to rehab. I quit on my own with the help of my psychiatrist and psychologist. Their thoughtful input and encouragement were invaluable. They both gave it after both had recommended rehab and meetings, but I wasn’t convinced. So many poz people whom I’ve known personally and professionally have told me how much medical cannabis has helped them, especially with pain. Both recent back problems and neuropathy have made me wonder if I should think carefully about a personal experiment. My younger brother smokes pot recreationally and I asked if, for my birthday this past November, if he would share a bit with me. He took the idea under consideration. He had some reticence, he shared later, because of my history. To be honest, he’s more like my big brother, always watching out for me, and I wouldn’t have minded if he had said no. I trust his judgment completely and often seek his counsel. A few days after my birthday in November, my brother texted one evening. The message read: stop by, we can smoke. I texted back that I had finally quit smoking cigarettes in advance of an upcoming surgical procedure. He quickly texted back that he had meant pot, you idiot. Well I felt as ready as I ever would, so I walked over to his place. The kids were at their mom’s, he announced, so we were in

viewfinder the clear. We went out on the balcony and lit up. It felt great. We laughed a lot ,and politics didn’t come up once, a rare occurrence between my conservative brother and me during this past election. It wasn’t until I was home a bit later when I could reflect on the drug’s physical effects. The truth was, I felt good. I didn’t notice the ache in my hands, feet, and back. Either the pot had a medicinal effect, or the pleasant state of mind I was in distracted me from the pain. I had only taken two or three hits, just enough to benefit from the effects, but not end up paranoid and anxious. I felt good the next day as well, when I wasn’t necessarily high any longer. Over the next several months, I tried it two more times, with equally positive results. I wasn’t ready to invest yet, but my brother would give me a little when he bought his own. Now, I know my history, drugs had major negative repercussions in my earlier life. If I were going to do this more regularly, I needed to think carefully. I didn’t rush in; it would be three months before I seriously considered a purchase of my own supply. Two weeks ago, I made the plunge. The decision felt even better, or at least safer, because my state legalized weed last month. Truth? I enjoy the feeling of being high. But the biggest difference this drug has had is relief from my pain. I treat it the way I used to treat alcohol, I indulge occasionally, but watch it carefully. My HIV specialist is on board with it, probably sick of hearing me whine about my discomfort. I want to research it even more and find out if what I’m experiencing is typical. The pot seems to have accumulative benefits beyond the actual point of being high. Part of it is the major amount of weight I’ve lost, I know, but I really feel that the drug has gone a long way in relieving the pain that I had felt would only get worse as I grew older. Overall, I still consider that I might have to give up grass (as they called it in my day) and I’m fine with that, but so far, so good. For now, I’ll indulge and feel the better for it. John Francis Leonard is an advocate and writer, as well as a voracious reader of literature, which helps to feed his love of the English language. He has been living with HIV for fifteen years. His fiction has been published in the ImageOutWrite literary journal and he is a literary critic for Lambda Literary. Follow him on Twitter @JohnFrancisleo2 • AUGUST 2021

Without health justice, we cannot end the HIV epidemic. Show your support at sfaf.org/shop

harold j. phillips to lead office of national AIDS policy

n June 5, 2021, the White House announced the appointment of Harold J. Phillips to lead the Office of National AIDS Policy (ONAP), part of the Domestic Policy Council in the Biden White House. Ambassador Susan Rice, President Biden’s Domestic Policy Advisor and head of the Domestic Policy Council, announced the appointment, recognizing the fortieth anniversary of the MMWR report of the first reports of what later became known as AIDS. An out gay PLHIV, with a Master’s degree in urban and regional planning from the University of North Carolina at Chapel Hill and an undergraduate degree from Kalamazoo College in Michigan, Mr. Phillips began work at ONAP on June 7, 2021. Before his appointment to head ONAP, Phillips has worked in the HIV/AIDS field for more than two decades, including both community and federal government positions. He most recently served as the Senior HIV Advisor and Chief Operating

aids institute joins amicus brief for medicaid expansion

he AIDS Institute joined twenty-one other patient advocacy groups in an amicus brief in a case before the Missouri Supreme Court brought against the state for failing to expand Medicaid despite voters’ having approved the expansion in a ballot measure in 2020. The suit seeks to force the state of Missouri to expand Medicaid coverage, offering life-saving healthcare to hundreds of thousands of Missouri residents. For those not familiar with the term, an “amicus curiae” (literally, “friend of the court”) is someone who is not a party to a case but assists the court by offering information, expertise, or insight that has a bearing on the issues in the case in the form of an amicus brief. The decision whether to consider an amicus brief lies within the discretion of the court. Nationwide, some two million people are ineligible for either Medicaid coverage or for

Officer of the Ending the HIV Epidemic (EHE) initiative in the Office of Infectious Disease and HIV/AIDS Policy (OIDP) at the U.S. Department of Health and Human Services. Mr. Phillips also served on the CDC/HRSA Advisory Committee on HIV, Viral Hepatitis and STD Prevention and Treatment (CHAC) from 2003–2010, among other positions administering Ryan White HIV/AIDS Program (RWHAP) Part B and AIDS Drug Assistance Programs. One of Mr. Phillips’ tasks will be to lead the development of a new National Strategy on HIV/AIDS which updates the HIV National Strategic Plan released in January 2021. This strategy will build on the existing plan, incorporate the priorities of the Biden-Harris administration, and include additional input from other federal agencies to help better address social determinants of health and improve health equity. In a message to colleagues on his first day as Director of ONAP Mr. Phillips remarked, “I look forward to continuing the work we have begun to end the HIV epidemic. President Biden is committed to ending the HIV epidemic and has called for bold and accelerated steps to achieve this aim.”

Affordable Care Act tax credits. Of those two million people, 177,000 are living with HIV in states that did not expand Medicaid under the ACA. This coverage gap disproportionately affects people of color and people living in the South. Expanded Medicaid coverage is an important, effective tool in the push for healthcare equity and for the goal of ending the HIV epidemic. “For people living with HIV, Medicaid is a lifeline,” said Michael Ruppal, The AIDS Institute’s Executive Director. “Medicaid is currently the largest source of insurance coverage for people living with HIV and ensuring that all states have expanded Medicaid will help end the HIV epidemic. Missouri has the chance to

improve healthcare for thousands of Missourians, and we hope this brief will help the court understand how Medicaid expansion will benefit thousands.” To read the amicus brief, log on to https://bit.ly/362I68m. For more information on The AIDS Institute, go to www. AIDSInstitute.org. • AUGUST 2021

Phillips photo by Keith Mumma/photography courtesy Kalamazoo College

NewsBreak

NIH studies "onestop" mobile clinics for HIV, substance use treatment

ecently, the National Institutes of Health (NIH) announced an ongoing clinical trial to determine the efficacy of delivering integrated healthcare services via one-stop mobile health clinics to improve HIV and substance use outcomes among patients who inject opioids and/or other drugs. It is hoped that mobile clinics could serve as an innovative strategy for expanding access to care and uninterrupted treatment to this underserved population that addresses the linked public health crises of addiction and HIV. The CDC reports that 10% of new HIV transmission in the U.S. are attributed to intravenous

drug use, primarily the injection of opioids such as heroin and fentanyl. Substance use and addiction not only weakens the body’s natural immune system; they also can create a disorganizing effect in a person’s life, making it difficult to take daily medication, including antiretroviral therapy (ART) for HIV treatment or pre-exposure prophylaxis (PrEP) for HIV prevention. The study, known as INTEGRA, or HPTN 094, is funded by the National Institute on Drug Abuse (NIDA) and sponsored by the National Institute of Allergy and Infectious Diseases (NIAID), both parts of the NIH. INTEGRA is conducted by the NIH-funded HIV Prevention Trials Network (HPTN) at sites in Los Angeles, New York, Houston, Philadelphia and Washington, D.C. Nabila El-Bassel, PhD, university professor at the Columbia University School of Social Work, serves as the INTEGRA protocol cochair. The study team will enroll 860 participants who inject drugs. Equal numbers of participants will be randomly assigned to receive care through either a single mobile clinic or through multiple community-based agencies. The latter group,

which reflects the current standard of care, will serve as the control arm of the study. “The COVID-19 pandemic has restricted access to medical care for so many people. At the same time, the intertwining epidemics of opioid addiction and HIV have continued to take lives. Now is the time to test innovative strategies to connect our most vulnerable populations to effective, integrated care,” said Steven Shoptaw, PhD, INTEGRA protocol chair and director of the Center for Behavioral and Addiction Medicine at the University of California, Los Angeles, in a press release. Learn more about HPTN 094/INTEGRA, or “A Vanguard Study of Health Service Delivery in a Mobile Health Delivery Unit to Link Persons who Inject Drugs to Integrated Care and Prevention for Addiction, HIV, HCV and Primary Care,” by visiting https:// clinicaltrials.gov/, using study identifier NCT04804072, and www.hptn.org/research/studies/190.

The UN’s global goal for 2020 was to have 3 million people on PrEP, but by year’s end, fewer than 1 million people worldwide had started taking the daily pills. Celum’s research has shown that young African women, who account for twenty-five percent of new HIV transmissions worldwide, have grave doubts about using the daily-dosage PrEP available. They cite fear of being perceived as HIV-positive, challenges with discreet storage, potential side effects, and difficulty remembering to take the daily drug. “For some people, a daily pill is easy,” said Celum. “But when you’re talking about populations where sexual activity is stigmatized, particularly young African women, men

who have sex with men, or female sex workers, there are a lot of barriers to taking a pill a day. If we’re going to impact the HIV epidemic through prevention, we have to do it at a much larger scale. If you only had to take one little tablet once per month and not deal with daily pill-taking and storage, that’s a totally different ball game.” If the Phase 3 trial is successful, islatravir will be submitted to the U.S. Food and Drug Administration for review. For details about UW Medicine, please visit http://uwmedicine.org/about. —Reporting by Hank Trout

researchers receive $122 million to study monthly pill for PrEP

he University of Washington School of Medicine announced that it has received $122 million from the Bill & Melinda Gates Foundation to study the effectiveness of islatravir, a once-a-month pill for use as PrEP. The five-year grant will support the IMPOWER 22 Phase 3 study, designed to evaluate the efficacy and safety of monthly oral islatravir as PrEP compared to a daily preventive pill. The study has begun screening and enrolling participants. The study will involve 4,500 healthy, HIV-negative cisgender women ages sixteen to forty-five, with 4,000 participants from across twenty-one African sites in South Africa, Uganda, Kenya, Malawi, Eswatini, Zimbabwe, and Zambia, and 500 women at sites in the southeastern and eastern United States. The first women enrolled will be those aged eighteen or older. Once the safety of the once-a-month pill has been ascertained, the age will be lowered to sixteen to begin data collection from adolescent women. This is the first such study in which women who become pregnant during the trial will be given the option to remain on the regimen or to withdraw. “This could be a game-changer,” Dr. Connie Celum, a UW professor of global health, medicine and epidemiology, and the study’s lead investigator, said in a press release. “The whole field is moving toward less adherence-dependent and easier strategies for users of HIV prevention.” AUGUST 2021 •

by Ruby Comer

Soraya Liza Lanyri

Ruby Comer: Oh geez, let’s put these darn masks away. Tired… tired…just tired. Hey a wee bit of levity for the first Q: Who was your first celebrity teenage crush? Soraya Liza Lanyri: Oh! [Soraya squeals.] David Cassidy [A&U, December 1999] from The Partridge Family. Oh I loved him! [Soraya starts singing his number-one hit, "I Think I Love You."]

Me too, me too [keyed up like a tweengirl, I scream as well]. Oh that Rolling Stone cover of him nearly naked….Yumm. [She nods.] Oh Ruby, I even had the Partridge Family lunchbox too. [We joyfully rib each other.] Those were the days. And speaking about the past… So it was Rock who first brought AIDS awareness to you… Yes ma’am! I was stunned to see him withering away, from how he used to look in all those old classic films. [She lowers her head, shaking it back and forth.] Almost as soon as Rock announced he had AIDS, he quickly died. I’ll never forget that show he was on with Doris Day; some animal show she hosted. The picture of the two of them was splattered all

Ruby illustration by Davidd Batalon; photo courtesy S. Lanyri

e-man hunk Rock Hudson shocked the world when he tragically died of AIDS-related causes in 1985. The dreamy movie star was only fifty-nine years young. If any one celebrity can take credit for drastically spreading the word of this appalling disease globally, it was Mr. Hudson. His death certainly enlightened the straight world, including my actor friend, Soraya Liza Lanyri. Like many of us, Soraya lost friends to AIDS. She confronted the pain by being involved with APLA, amfAR, Project Angel Food (PAF), and others. Soraya participated in AIDS walks, fundraisers, dance events, and other charity affairs. By helping others she took care of herself! At fifty-six, Soraya, is currently a Palm Springs resident——one of my beloved places on earth! Oh, those warm wispy desert summer evenings are ethereal. She was born in Quebec City to two European immigrants, her Dutch mother and her Moroccan father, though raised in Los Angeles. French is her first language. Soraya studied at the Los Angles Theatre Academy and graduated from California State University Los Angeles (CSLA), receiving a BA in Theatre Arts. This gifted woman is a triple threat: singer, dancer, actor…and was a member of San Francisco’s Mime Troupe, and has played piano for several jazz bands. Classically trained, Soraya has performed in Shakespearian plays, frolicked in musicals such as playing Sally Bowles in Cabaret, and played in serious dramas like Carson McCullers’ Member of the Wedding. Soraya was also a dancer in Madonna’s “Deeper and Deeper” music vid, from the diva’s Erotica album. Several years ago, the talented Ms. Lanyri transported her craft from the City of Angels to Palm Springs, starring in Imaginary Cuckold by Molière, Damm Yankees (playing the Gwen Verdon role), and Murder at Howard Johnson’s. Who’s the thespian’s inspiration? The ol’ famous redhead herself (though her flaming one-of-a-kind iconic color was actually a henna dye)——Lucille Ball. “She was such a great comedian and such a great business woman. Lucy was a trendsetter, a forerunner, and a pioneer in the women’s movement.” In 1994, AIDS hit home for Soraya when her dear friend, Ben, died. She was shattered. Seeing him emaciated and witnessing Ben’s demise was a pivotal life-altering junction for her. As Ben lie dying, he was completely convinced that the drug AZT , a toxic and controversial antiretroviral drug that went on the market in March 1987, was taking his life. Soraya and yours truly meet up in semi-lockdown environment in Palm Springs at the lively colorful Lulu’s restaurant on Palm Canyon Drive, sitting outside amidst the swamp coolers and misters. Our masks dangling from one ear.

• AUGUST 2021

over the supermarket magazines. I was in Europe at the time when I heard about it. [Pausing, she sips her merlot.] I felt sad about his death, and angry about how he was hounded by the press, not treating him with the dignity and respect that he deserved. Indeed, yes. Let’s get personal. Tell me about your sexual awakening. In 1981, when I was in high school, I was already going to mixed gay dance clubs. A lot of guys there were bisexual. Then when I was twenty-two, I was in the underground club scene that was really a mixed crowd. At that time I was fully aware about the dangers of HIV. It made me more watchful and careful——and it truly put a dampener on things. I couldn’t be free like I wanted. I was filled with so much fear. I mean, I could die from this disease! Soraya, when and why did you first get tested? How old were you? Well, I was twenty-two, and had been with some guys without a condom and I started to get concerned about it. So I went to Planned Parenthood for a test. In those days you had to come back days later to obtain the results. It was such an anxious time waiting! I started to think of worstcase scenarios…but thankfully it was negative. And, Ruby, I made a promise to myself to always use condoms. I did not want to go through that fear and anxiety again. Tell me about one of the early AIDS events you attended. There was an AIDS awareness dance event at the Santa Monica Hangar in 1991. There were naked men and women dancing in cages. Some guys were chained to walls and there was lots of booze. During the course of the evening, there was quite a bit of commotion in one of the darkened rooms. It started out with a few men and it turned into at least fifty. Men were having sex everywhere. I remember thinking, I thought this was supposed to be an AIDS awareness night, but they were passing out plenty of condoms! Oh, shoot, I missed that fun one! Okay…I wanna hear about Ben. I miss him. [Soraya glances out, just feet away, to the passers-by on the main drag. At that moment, a mime street performer walks by and presents her with a white rose then instantly disappears.] Hmmmm, er, that’s timely, Ruby… . Maybe sent from Ben?! Well…I’m speechless. [She recomposes herself.] Ben and I met at the Mondrian Hotel [on Sunset Strip in Los Angeles] where we worked together in the summer of 1994. He was a bartender and I was a cocktail server at the pool. I had just graduated university with a degree in theater. AUGUST 2021 •

Of course you did! [I beam at her. Soraya continues.] At times the pool was dead, so we got to know each other quite well. By the fall he was getting skinnier and weaker. I was concerned about his change in appearance, so I brought it up. He confided that he had AIDS, and that he needed to get treatment. [Soraya halts briefly.] I was flabbergasted. I didn’t know what to say. I felt sad, but I tried not to show it. I just wanted to comfort him and uplift his spirits, and encourage him to not give up. I became his cheerleader from that day on. Wow. We started to have really in-depth honest talks about death. I remember asking him how he thought he contracted the virus. He told me about when he was a kid “fresh off the boat,” he’d say, from Wisconsin and moved to Manhattan. He began clubbing for the first time and plunged into having lots of sexual fun. He’d also go to bathhouses and stick his dick in a hole. You know what I mean…. [I chuckle a bit.] Oh, yes, glory holes. They were a very popular activity! [Soraya chuckles too.] Yes, yes, and I was surprised when he told me that, as he seemed so, well, proper and innocent! [She purses her lips, and arches her eyebrows in a comic gesture, which I can see her doing on stage.] As Ben started to get sicker and weaker our talks became even more intimate. We knew we didn’t have much time left together. I asked him one day what his greatest regret in life was. He told me, “The sex wasn’t worth it, Soraya.” That statement was a really poignant moment in my life, Ruby. It became my constant reminder and mantra in life: to always stay safe and protect myself. The divine signs along the way that appear for each of us along our life journey. Love it. You learned early on how to care. How brilliant. When Ben couldn’t work anymore I organized a party for him at Tex Mex [West Hollywood restaurant] with our fellow work buddies. When he arrived he looked so gaunt and skinny. He was over six foot and probably weighed around 130 pounds. Our friends were shocked because they hadn’t seen him since he had left work. I was so happy that the waiter and everyone were so kind and considerate towards him. In those days you didn’t know how people would react, since there was so much fear and controversy over the disease. Very very true. We had a lovely reunion where love and laughter was shared. [Just then Arial Trampway [A&U, May 2018] makes a grand entrance into Lou Lou’s. Soraya and I turn and watch the local humanitarian drag queen for a moment as she sits in an inside booth.] She is fab! [I nod ardently as

Soraya goes on about Ben.] As he became sicker and bedridden, I would go to him and hold his fragile little hand. But he was strong-willed as ever. He felt AZT was killing him. I told him to stop taking it if he felt that way. But unfortunately the disease was too far advanced. So many people went this way…heartbreaking and catastrophic. Ben soon ended up in hospice in Echo Park [Los Angeles]. It was a comfortable place and the staff tried to make it as homey as possible. [She lightly clears her throat.] I felt so sad for the men who where there, that didn’t have any visitors. It was very tough mentally and emotionally to see, but…imagine how they felt. I always tried to hide my sadness from Ben, as I was there to support and uplift him. He died soon after entering hospice. Oh Soraya… When he died I had a dream about him, Ruby. He looked just like he did before he got sick, happy and smiling. I asked him, “Where are you now? How is it?” He said that the place he was in was just like where I was, just a different dimension. It made me feel better to see him happy and well. Smashing. Lovely touching story, Soraya. How on this green earth did you confront the grief, not only of Ben’s death but the many others you lost? By becoming more grateful, Ruby. It showed me that my supposed problems were nothing compared to those of my friends who had died of HIV. I was/am grateful to be alive. Their deaths urged me to give back to the community so I began volunteering. I appreciate all my gay brothers that I’ve known, still love, and have such fond memories. My life would not have been as joyful if it weren’t for them My god, we had so much fun together clubbing in the eighties and nineties…. My lordy I do remember those days well. But for me, since I’m a bit older, those times extend back to the disco seventies and Studio 54! Soraya, what makes you get up outta bed in the morning? Ruby, every day is a new day to uplift and be of service! Skip over to Soraya’s Instagram @Sorayal111. Ruby Comer is an independent journalist from the Midwest who is happy to call Hollywood her home away from home. Reach her by e-mail at MsRubyComer@aol.com.

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

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A GRACE OF WORDS, SAVING GRACES In a new memoir, poet Spencer Reece pays tribute to the joy in the art that saved him, reflecting on self-affirmation, grief, sustenance and persistence

by Philip F. Clark

oet, visual artist, Episcopal priest, mentor and friend to many, Spencer Reece is a man of multiple aspects of self-expression. His acclaimed collections of poetry, The Clerk’s Tale (Houghton Mifflin, 2004), and The Road to Emmaus (Farrar, Straus and Giroux, 2014), were deserved recognition of a poet of intelligence, spirit, and endurance——but recognition came after long struggles with sexuality, alcoholism, and a search for faith. Yet through every challenge, poetry was a constant, its great poets always there to sustain him: Gerard Manley Hopkins, Emily Dickinson, Elizabeth Bishop, James Merrill, Mark Strand, among so many others. They were a foundation for his development and showed a way to illumine the life that he knew he must attain. In The Secret Gospel of Mark: A Poet’s Memoir (Seven Stories Press, 2021) Spencer Reece traces the roads, people, and events that were integral to gaining acceptance, understanding, and self-acclamation. It is not only a mirror of often arduous experiences, but a testament to poetry’s ability to be both salve and teacher. It is a gay man’s coming to life through words, and the many chances of grace through the community of human and spiritual connection. In our conversation, the poet also pays tribute to poets who were important presences in his life, who were lost to AIDS——James Merrill, and Nick Thorndike. I posed some questions to the author, to discuss his journey from the past to the present. Philip F. Clark: Your memoir is a journey of many challenges; the opening epigraph you chose is Jeannette Winterson’s haunting “The healed wound is not the disappeared wound.” As I finished the memoir, I went back to those words, because they resonated in me deeply, in all the experiences you write about, and through them, the truth that wounds are healed, but always present reminders of lessons learned from them. Can you speak to the lessons of healing that the memoir represented for you? Spencer Reece: Jeanette Winterson! Oh, I admire that woman! I love her turns of phrase, her sentences! I’ve read her backwards and forwards. We both flew to literature when our sexualities exploded within us and I think we’re roughly the same era: she’s always spoken to me as a writer.

I didn’t want to write a memoir. The word put me off. The idea put me off. Then I thought it sounded self-indulgent. Who was I? Yet year after year the material kept telling me it would be a memoir. The story of honoring poets who saved my life needed to come through my autobiography. I attempted critical academic assessments of each of the poets (some of those materials, altered, remains), but in the end the long academic analysis left me a little bored. It is astonishing how writing actually tells you what it wants to be. If you listen to that you are on to something: if you ignore what the writing is telling you the writing most likely becomes too controlled and flat-footed. I think the process of writing this most transparent of nonfiction, now that it is done, has actually healed me, to address your question. It’s so different from writing poetry. You almost need a different sensibility! The book challenged me and when you’ve finally left the finished work on the desk and can walk away and say you were challenged by the writing, that I think is a very good thing indeed. That’s where the magic comes. That’s the Holy Spirit. Memoir is perhaps the most curious genre: It’s a nude drawing. It’s a self-portrait. Mine might resemble Lucien Freud’s work: the fleshy less-than-pleasant humanness of those paintings. Memory is also the most unreliable narrator: hard to trust it. And the longer I labored on this the more I realized it was simply one version of things, there could be others. I just had to tell the thing as close to the truth as I could. The book represents healing. It’s definitive. I highly doubt I’ll work in that genre again. The book glows with story of how I survived myself. When I finished, I felt a weird and larger peace than ever before. Furthermore, I think it has informed my poetry. The current book I am writing, for example, has little to no autobiography in it, or if it’s there, it feels——what?——tangential, used for a greater purpose. In memoir, autobiography is the purpose. Much of the memoir recounts the many ways that chance—— grace——brought so many people into your life who made, and continue to make, an impact on your life, your poetry, and your current work in faith. How has chance and grace been a part of the journey? • AUGUST 2021

photo by Pete Duval

Grace is unmerited. My sense of grace came most swiftly after the murder of my cousin when we were both twenty-three. Why did he die? Why did I live? There’s no rhyme or reason to it. I’ve had one hell of a lucky ride, and that includes the disappointments and down moments of which there have been many. And yet, here I am. Young, I wanted to be published and be like Flannery O’Connor or James Baldwin or Tennessee Williams or Elizabeth Bishop. I wanted to travel. I wanted to be published by FSG. In little unnoticed Minneapolis, while James Wright was writing those brilliant poems not far from my prep school, I sat in AWP English class and dreamt I’d be a writer. I was lonely and struck dumb in many ways. I wanted to go to Parnassus. As much as the memoir is a journal of your coming to self-acceptance and renewal, it is also a wonderful map of how poetry itself helped you reach those things in yourself. Poetry came to you at a time when you most needed it. Throughout the book you reveal how specific poets——George Herbert, Gerard Manley Hopkins, Emily Dickinson, Sylvia Plath, Elizabeth Bishop (to name just a few), helped your journey. Finding these poets and their poems enabled you to more deeply understand poetry on a critical as well as personal level. Who were the most significant to you during this time? The poets named in the book were monumental in their effect on me: Plath, Bishop, Herbert, Merrill, Dickinson, Hopkins. Each had a huge effect on me. There were others: Roethke, Glück, Hass, Kinnell, Merwin, Wilbur, O’Hara, Whitman, Eliot, Larkin, Stevie Smith. Later that spread to poets in translation! The Russians! Akhmatova! Tsvetaeva! Most recently my knowledge of the Spanish poets has deepened: Lorca, Cernuda, Machado, Hernandez. Well, it’s like a never-ending galaxy, there is always another and another, isn’t there? My father was just diagnosed with cancer and recently we spent all day in the hospital with the oncologist and radiologist. He said, “I don’t know why you got so obsessed with poetry.” I said, “I’m not sure either.” It’s a bit of a mystery. Why not basketball? I did that too in high school. I liked it. But when I hit upon poetry it was like all the lights went on in the town. It was magic. And I knew it. I knew it then. No explaining it I suppose. And then I became voracious to read everything, starting

continues on page 40

AUGUST 2021 •

A New Documentary Project Seeks to Tell the Stories of HIV Long-Term Survivors

Who Benefitted from Early Access to Meds

by Chael Needle

ecently lotteries have been popping up across the country to encourage people to become vacccinated for COVID-19. Some within the HIV/AIDS community have balked at the idea that people need to be wooed with the promise of money to protect themselves against the virus. Some remember fighting for their lives, activists whose successes included creating a fast-track for FDA approval for HIV meds in a landscape without effective regimens. Some remember fighting for compassionate access for the most vulnerable individuals, those with advanced symptoms who were ineligible to be part of a clinical trial and needed pre-approval access. Some remember a time when the pharmaceutical companies, partly in response to this pressure, offered lotteries for protease inhibitor-containing HAART meds, scarce in number because they were not yet FDA-approved and not yet produced on a mass scale. Some remember applying for these compassionate access protocols organized by Roche and then Merck, not because they would win money if selected but because they

Chael Needle: Why do you think it is important to document the lottery process for today’s audience? Malcom Gregory Scott: [As I stated before] the story of the unsung

photo by Gregory Grisham

Lazarus Lotteries

would win back the chance to stabilize their health. And live. Rise again, like the Christian bible’s Lazarus. Two filmmakers, Carly McCarthy and Malcom Gregory Scott, have chosen this subject for a yet-filmed documentary, The Lazarus Lotteries. The San Francisco-based production is currently seeking long-term survivors who entered one of these lotteries and want to tell their stories of survival. Tens of thousands needed the meds; fewer than 4,000 won access. Scott himself benefitted from one of these lotteries and his search for other survivors will form a throughline for the doc. Says film producer-director Carly McCarthy about her impetus to work on the film: “I met Malcom a few years ago, and after hearing small bites of his life story, I was immediately intrigued. I did not know what the final outcome would be of making a film about Malcom’s story, but I knew I had to start somewhere. Originally, I had the vision of a short film that told a compelling yet simple version of his story of survival and his role in the era of AIDS. The more time we spent together, I realized quickly how Malcom was one star in a galaxy of history. How his story was connected to a chapter in LGBTQ history that was bigger, scarier, probably more influential on the ever-changing story of queer liberation than most can imagine. I have a hunger to understand this chapter, not only in Malcom’s life but in the story of the United States of America.” Co-producer Malcom Gregory Scott’s reasons for making the doc were political but also directly personal: “I’ve been wanting to make this film for years, not only because I’m personally so curious to meet other people whose lives were saved in the last hour by the 1995 protease inhibitor expanded compassionate access protocols, aka the lotteries, but also because I think it’s so important to tell this extraordinary story, and give credit to some of the activists and others who fought so hard for the lotteries. These are unsung heroes at a crucial turning point in the history of AIDS, and I want to be sure history doesn’t forget them. “After meeting Carly through a mutual friend a few years ago, I think she read something about my story on Instagram. She asked me if I would let her film me for a short documentary about my life: being kicked out of the Navy for being queer, being diagnosed with HIV when the diagnosis was considered a death sentence, writing briefly for television, becoming an activist, and then barely surviving stage IV AIDS only because of a lottery for a new miracle drug. “ When McCarthy visited Scott in Portland a few times, Scott says he became very comfortable sharing his story with her and he realized she had a solid skills set to connect with others who might tell their stories. “And I vibed with her aesthetic values, too,” he adds. Scott dives into storytelling mode: “One day, after shooting at my home in Portland, Carly said, ‘Your story is so big.’ “‘Maybe just desultory,’ I countered. “‘It’s just hard to know how to tell it, what to focus on, where to start,’ I think she replied. “That’s when I told her that I had an idea for a documentary that was more interesting than just telling my personal story. I explained I wanted to identify, locate, contact, and meet other participants in the 1995 compassionate access lotteries and capture their stories on film. She nodded and said she would think about it. I honestly wasn’t sure that day that she understood what I was talking about, but after thinking about it for a time, she called me to say, ‘I’m in.’ “COVID happened not too much longer after that, and slowed us down, of course, but now it’s also motivated us to proceed without delay, serving as it does as a reminder of our common mortality, and the need, therefore, to document first-hand accounts of the lotteries without delay, and also because it seems the world could really use these stories right now, these stories of unlikely survival in a pandemic.” A&U had the opportunity to correspond with the filmmakers about their project.

• AUGUST 2021

photo by Carly McCarthy

heroes who made the lotteries possible deserves to be heard, and the stories of those who survived a pandemic against all odds because of those heroic efforts need to be heard, especially right now. But asking why it’s especially important for today’s audience reveals new layers. Sarah Schulman, in the introduction to her sweeping history of ACT UP [Let the Record Show; see this issue’s cover story], addresses this question eloquently and I can only do a yeoman’s job compared to her, but she parses well the ways in which the history of AIDS has thus far been distorted by sexual stigma, anti-queer prejudice, and commercial biases. We are just a small part of what I think is a larger impulse of the AIDS generation, my generation, in league with our younger cultural descendants who are so thirsty for these true accounts, to document an accurate history of the AIDS era. And this story is instructive, I think, instructive to future activists, public health officials and pharmaceutical interests. Carly McCarthy: There can be such an amnesia and disregard for historical trauma and oppression, even when that history is so recent. Making films that highlight this and the glimpses of survival gives people an opportunity to learn and for others where relevant to own their history. Our community needs to be reminded of the heroic and radical activism that made real life saving change in the era of AIDS. When so many [limit] their activism to exclusively posting on social media, we all need to see what it was really like to dedicate a life to making change. Now more than ever we need to look at the tactics from the past and apply them to what we face as a community. Malcom, what was your own experience of the lottery at the time? How do you see it now, looking back? Scott: I was already very ill that summer twenty-six years ago when the lotteries were announced. I had won my battle with pneumocystis carinii pneumonia in spite of a collapsed lung and an allergy to Bactrim, the main prophylaxis for that opportunistic infection (OI). I had fought back the Kaposi sarcoma also, undergoing radiation therapy, subcutaneous micro-injections of chemo drugs, and months-long courses of interferon. But by 1995, I was losing the war. I hadn’t had a measurable CD4 count for nearly a year, and I was wasting away with a very advanced case of microsporidiosis, huddled inside a bubble I’d created in a basement apartment around the corner from my doctor’s office in N.W. Washington, D.C. I had already lost one-third of my healthy body weight, and I looked like a walking skeleton. In fact, I had actually surrendered months earlier, and begun the final preparations for my death. I was dosed up on morphine and opium tincture, and required medical cannabis to stomach the handfuls of prophylaxis pills I took every three to four hours to prevent the various OIs that threatened, so my memories are not altogether clear from that time period. But at some point, months before that summer, we began to hear rumors of a new class of drugs called protease inhibitors just entering FDA trials. So I fought to hang on to that sliver of hope; I decided to try to live long enough to see if those new drugs would work for me. By that summer, the FDA was expanding the trials, and soon, almost anyone privileged enough to have access to healthcare could get the new treatment, provided they were still healthy enough to qualify for the trials, which I definitely was not. So I would need to hang on for perhaps another year before the trials would be complete, and knowing how difficult past winters had proven to my health, my prospects still appeared grim. Then in June, the Associated Press ran a story: “Lottery Set to Distribute Experimental AIDS Drug.” That headline renewed my hope. Soon another AUGUST 2021 •

Malcom Scott Gregory and Carly McCarthy. Photo by Carly McCarthy

lottery from another drugmaker was announced. Doug Ward, my brilliant doctor, facilitated my applications. I still have the letter from Merck explaining that the 1,100 slots were already filled in the first “drawing” and that I was number 9870 on the waiting list should any of the 1,100 be unable or choose not to participate. Nor did I get Roche’s PI on the first “drawing.” So I waited, I hoped, and I tried to stay warm, through what I’ve often described as the coldest winter of my life. Then, in January, and on my thirty-fourth birthday at that, Doug Ward called me to tell me I had been awarded a slot in Roche’s expanded compassionate access protocols for saquinivir. By February 1996, as I began taking the new drug, stories of miraculous recoveries were already spreading through the community and starting to emerge in the press, and my own was no exception. Within four weeks, I had gained ten pounds and forty T cells and was no longer largely bedridden. Twelve weeks after starting therapy, I was well enough to volunteer as crew for the first (and only?) AIDS Ride from Philadelphia to D.C. Years would pass before I really believed I might live to grow old, but my immune system continued to recover, my CD4 count climbing slowly over the years, although never matching the levels documented in 1987 when I was first diagnosed with HIV. Carly, how does this film fit within your aims as a filmmaker? McCarthy: A question I ask myself when approaching a project is, “how will this help my community become stronger and more free?” The LGBTQ community are for better or worse, masters at transforming grief into something else. Something that does justice, creates honor and can live on for whatever was lost. Something that belongs to us forever and that we get to pass down to the next generation. There is a resiliency within us that is beautiful and unstoppable. That is where I feel the most pride. It is so critical that in the fragile times we are living in as a country that we hold the past as we look forward and envision our freedoms. I want to always be making work that centers that message and uplifts those who lived through unimaginable struggle. If you or someone you knew received protease inhibitors through a compassionate access lottery in 1995, the producers seek to document your story on film. They also seek other first-hand accounts of the lotteries from activists, public health officials, medical care providers, pharmaceutical professionals and others with direct knowledge of the lotteries. For more information, or to connect with the filmmakers, visit www.lazaruslotteries.com or email info@ lazaruslotteries.com. Chael Needle is Managing Editor of A&U. Follow him on Twitter @ChaelNeedle.

Beautynot Photographer Jessica Tanzer Finds Teachable Moments in Her Activist Past for a New Generation

by Chael Needle

hat San Francisco-based artist Jessica Tanzer would start our e-mail interview not only with generous written responses but also with a spate of images, clippings, and scans makes perfect sense. She works in a visual medium——photography. Or, to put it another way, and perhaps she might agree, we need more than words to express ourselves. She shared the jpegs with me as one might go through a box of mementoes: A Marc Geller photo of her, face upturned to the sky as she strides in belted distressed denim shorts, combat boots, and white socks to match a white bralike top, circa 1990. A family portrait snapped: Jessica with her two sisters and their mom when they visited San Francisco for the 1990 Pride parade. An image of her Tank Hill Crew T-shirt from her soon-to-relaunch social justice e-commerce site: gray and short-sleeved, with the words, ‘Cunts Are Not Supposed to Be Orange: Vote Planned Parenthood.’ A portrait of the band 4 Non Blondes, with an introductory caption: “Linda Perry of the 4 Non Blondes was my best hang-out friend and on again/off again roommate in those days. ‘What’s Up?’ was really an anthem of the time. The 4 Non Blondes’ first show was a needle exchange fundraiser for ACT UP: this was the original band.” A photo from her days in ACT UP and Queer Nation: a woman gazes out of a full-body cocoon (or mummification?) made out of “Caution” tape. A newspaper clipping of a photo of a window ledge, showing a dramatized spanking as police protest at the Bad Cop, No Donut Castro Street Party: “Here is my old window ledge (the pulpit) on Castro where we did the ACT UP headcount that became [the first] Pink Saturday, and realized there were thousands of us. It was a plan [that] me, Michael Goff, Alan Klein, and Ken Woodard came up with at Cafe Flore as we were marveling at how many people were showing up in town for the [6th International] AIDS conference with ACT UP T-shirts from all over the world. We had many political rallies off of that ledge; we had stage lights wired in; we would rent huge sound systems parked on trucks down below and plugged in to my bedroom outlet and we would throw toilet paper over the bus wires so the buses couldn’t pass; the toilet paper would cause little fires. The last rally we had was counted on the news as at least 10,000 people.” A constellation of her glorious photographs collaged recently above a magazine rack in the Castro’s Dog Eared Books (previously A Different Light and right across the street from her window ledge). She emphasizes that having a “local bookstore as a hub for organizing, pre-cell phone, for activists was great and that having the ledge as a pulpit directly across Castro made for the perfect storm of gathering people for unpermitted street rallies. The link between ledge (with stage lights and sound system) and bookstore made for some very powerful Castro history. ‘Rally at 8, meet outside of A Different Light.’ The staff was made up of activists who all went on to do great and substantive work as performers, authors, magazine publishers, fellows, professors; Justin Vivian Bond,

Fear

Alexander Chee, Frances "Franco" Stevens, Rachel Pepper, Richard Labonté, Pansy Bradshaw, Betty Pearl, Ed Moreno, Terence Smith (Joan Jett Blakk).” Another image: her iconic photos hanging in “The Rebel Dykes Art & Archive Show” exhibit at Space Station Sixty-Five in London (through September 17), portraits of women, studies in desire and empowerment and self-definition. Kissing. Gazing. Embracing. Claiming space. Her photos are also featured in the new documentary, Rebel Dykes, to which the exhibit is companion. One of her images of woman-centered desire featured in the film/exhibit graced the cover of British lesbian magazine, Quim: for dykes of all sexual persuasions, and one can understand why——two women kiss in a passionate embrace, focused intensely on each other, protecting their intimacy. Cornell University acquired Jessica Tanzer’s archives as part of its library’s Human Sexuality Collection in June 2013. The archives include traditional darkroom 16 x 20 master prints of about forty of her iconic 1988–1996 images. The collection, its assemblage completed thanks to the lockdowns, left for Ithaca, New York, earlier this month. Also during the past year, Tanzer “did a ‘Virtual Pride’ with Cornell in 2020 of Pride pictures from 1990 that had never been published....I participated in some other virtual shows as well, all old work....There’s definitely a hunger for that history right now, which makes me happy.” During the course of the interview, I ask about Tanzer’s own resiliency and its connection to the fight for social justice, and she delves deep into personal history. Her grandparents, Russian-Jewish immigrants, escaped the Ukraine (the Russian secret police wanted to arrest her grandfather for his socialism and support of intellectuals). Their first child, a daughter, died of starvation as Tanzer's grandmother held her in her arms in an Austrian hard labor camp. Seperately, they made it to America, settling in Portland, Oregon. In her parents’ home, Tanzer remembers “a house full of palpable excitement, politics, art, style, and voter registration. I didn’t understand it but knew something important and exciting was going on.” Her parents, both Reedie (Reed College) intellectuals, were best friends with another couple, Pulitizer-winning journalist Jack Rosenthal and editor/linguist Marilyn Rosenthal. Deeply involved in the civil rights movement, Tanzer’s dad was a lawyer (and then judge) who campaigned for John F. Kennedy and signed people up to vote, and later, as a grand jury expert hired by Robert F. Kennedy’s Department of Justice, worked on the “Mississippi Burning” legal case, writing and securing indictments against Sheriff Rainey, Deputy Price, and sixteen others. Tanzer notes: “From my four year old eyes, life was ideal, but that changed in an instant when my parents split up. I was just five, my dad was out of the house which absolutely crushed me as a daddy’s girl and my thirty-nine year old mother found herself a single mother of four kids under the age of seven, heartbroken and financially crushed. That was when I grew up and when I became instantly deeply sad and invisible.” Hardships ensued, but through it all, her mother created a nurturing learning environment, turning a small room in their new house into “a library full of literature, art books and record albums.” Notes Tanzer: “Food stamps, art classes and free breakfast and lunch programs got me through school but in my • AUGUST 2021

Monique Popstitute. Courtesy Human Sexuality Collection, Cornell University

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San Francisco Pride 1990 Chaos. Courtesy of Cornell University’s Human Sexuality Collection

opinion our real education came by way of home schooling. Our mom kept us learning, chose our role models (Radcliffe Hall, Sarah Bernhardt, Blondie, etc.); taught us sensibly and realistically about drugs (how to do them responsibly) and sex (how to be good and safe); and stopped her daughters from walking with our arms crossed or from talking with squeaky voices so that we would grow in to strong women. Our mom wasn’t a soccer mom, but she would gladly drop us kids off and pick us up from the midnight showings of Rocky Horror Picture Show at the Clinton Street Theater.” Recently, Tanzer created another opportunity to pass along what she learned from her mother. During the lockdowns, Tanzer built and tested an e-commerce beta site with designer and photographer Alexx Conroy (also her husband), designer Ken Woodard, and writer Suzanne Finnamore (whom she hopes will return with other guest contributors when the site is relaunched). “We are getting ready to relaunch it in the spirit of my mother’s home-schooling with home decor, jigsaw puzzles, clothing, etc. with art from movements that came from war and strife and activism like Dada, Bauhaus, vintage unionizing sexworkers, role models, some bits of my work and all with teachable moments, explanations of what the art and movements were about. This is such an important time to home-school by way of trickery.” As we corresponded, it became clear that Tanzer carries forth this creative and educative approach to life and work, reflecting on what she has learned and searching for teachable moments along the way.

Chael Needle: What have you been working on lately, during this latest pandemic? Jessica Tanzer: I was just coming off of twelve years of life-threatening illness(es) when we were told to stay inside and, with the future being an uncertainty, we started an [e-commerce] business....We took everything down after the Orange monster was voted out and haven’t finished the store for it to go live.… Most art that I did during the pandemic was a pivot to e-commerce with a politics/history educational slant and catching up on the interest and commitments of my known activist body of work from San Francisco ACT UP/Queer Nation days, which is now finally and for the first time a full body of museum-quality prints for exhibit. I am really excited about what we are creating for our shop and I am really excited about having a printed body of my old work; I never had the money to do that. In the old days I would trade the oh-so-lovely and generous Danny Nicoletta prints for darkroom time and studio time; photography is an expensive craft so to have this now is a new and exciting prospect even though the work is from a different era. This isn’t my first pivot to support myself during a crisis; I grew up getting knocked down a lot, so I’m a pro at picking myself back up. [First] I learn about what I am fearing; it is an outstanding tool for anybody. During the crash of 2008 I was very sick on chemotherapy and work stopped. I asked my history buff father to send me a book that would help me learn about what businesses • AUGUST 2021

flourished during the Great Depression, to learn from what I feared, and from my very, very sick bed I pivoted our photography business to a model that could succeed through a great recession, five kinds of chemo, ten surgeries, three pulmonary embolisms, a compromised immune system and chronic pain and it really did.… How was this sense of resiliency forged in your early adult life, including the early AIDS epidemic? [As I recounted earlier] mine was a very troubled and difficult childhood and, by the age of sixteen, I was out of the house, not by my own choosing. I knew my only way forward was to graduate high school, so I kept my situation a secret and did much of my junior and senior year while sleeping on the street or in punk-rock houses…and I graduated. When people comment that breast cancer must have been so hard——yes, it was hard, but it was a walk in the park on my scale of life. Life has always been about pushing forward, finding solutions, being careful to not self-medicate and to not ask “why me.” If there is a problem, roll up your sleeves and get to work. Our mother came out of the closet when I was in my early tweens, during the Women’s Liberation Movement. Our house became a gay epicenter in Portland and morphed in to a house full of radical separatist feminist lesbians. (In those days, in our area, “lesbian” was an offensive word. The preferred term was “gay.” There was so much angry energy and offense taken [about] appropriate terminology...that I have never been PC or militant, but I do my best to be respectful.) AIDS, before it had a name, was a big subject in our house. My mom and some of the others were nurses so it was a very prevalent topic and taken seriously by us from the earliest discussions. Our house was also like a giant closet. It was gay on the inside, sometimes on the porch and, every once in a while, for a fleeting moment, in the car. I was still in middle school. One day in the car my mom’s lover Deb had her arm across the front seat playing with my mother’s hair; it was as if a very private act accidentally happened in the open. Shortly after, I was confronted by a boy down the block. The women would wear lavender-enameled stars to identify each other and they would wear their button-down shirts buttoned just a bit further down to their cleavage and it was discreet and so powerfully beautiful. We young sisters knew and still know all of the words to Cris Williamson’s The Changer and The Changed. When I was thirteen, I developed a gut-crunching, out-of-mymind lust for one of the women in the house, Rainbo. It lasted for decades. She was my first love. I loved Rainbo and later other women [but because] bisexuality was still a taboo subject and “not real,” my coming out as bisexual was as difficult for me as I could imagine coming out gay is for those coming from straight families. My body and brain thought something was wrong with me that I couldn’t understand and, when I finally was publicly with a man in 1996, I AUGUST 2021 •

Quim Cover, London. Courtesy of Cornell University’s Human Sexuality Collection

was shunned by much of my lesbian community and told by many that it would “ruin my career.“ My siblings and I grew up as a very tight and close foursome. We still are. We needed to be then to take care of ourselves and each other, to stay fed and protected. Now we’ve all moved on to such interesting paths and all with social justice ingrained in our fabric; mine in San Francisco, [where] I studied at San Francisco Art Institute.... During the AIDS crisis my work was to promote safe sex, some quite graphic but beautiful, and to address homophobia in a way that was as beautiful [as it was] inside my house as a teenager and of course to fight art censorship with grace and beauty. To me, this has all been an organic, fluid continuation from my grandparents’ struggles and successes to my parents’ to my siblings’ and mine. Most of my work from 1988–1996 was in the studio and directly for political purpose. In my off-time I was a part of something that was going on in San Francisco that is indescribable, although many try. The energy and creativity and blowing off of steam from our desperate days of fighting for our friends’ lives and taking care of them as they died very ugly deaths was such a sight to be seen and experienced and I never brought my camera with me. Instead, when I wished I had a picture of what I was seeing I would look around to make sure that my friend Marc Geller was getting a picture and as usual, he was. I predict Marc will be the Vivian Maier of San Francisco’s AIDS Crisis days. I practically froth at the mouth, imagining getting in to his years of negatives. My next yet-to-be-seen chapter of work will be 1997 through 2004 when I finally took my camera with me to capture my life and my friends. I am so excited to get to this part. It is rich in imagery and in survivors and also importantly in friends who survived AIDS but, with their HIV status, did not survive other serious illnesses. I think that’s a very important point to make in whichever pandemic we might be in; it’s never over and needs to be treated with thought and care. We aren’t invincible, but we are resilient.

Three Legends: Part of a larger tribute to friends who passed not so long ago, sometimes because of illnesses that were too hard to fight because of their HIV status or other conditions. Top to bottom: Phatima Rude, Alexis and Patricia Arquette, The Stevelady. Courtesy of Cornell University’s Human Sexuality Collection

You mentioned today’s “hunger for [that] history.” What do you hope present-day viewers take from your work from ACT UP/Queer Nation/Pride as well as your 1997-2004 period? In the nineties, we were nostalgic for the Summer of Love and the Vietnam War protests….I think it’s the same nostalgia now for a time not yet named...our [1990s’] Summer of Love, [and] the activism that came from our [AIDS] war. [Tanzer noted a vital difference in communication between then and now.] In 1996–97, when email was just becoming the tool for communicating I started strongly imagining, predicting even, that people as a global society were going to lose their social skills. I used to imagine that one day there would be chaos on the streets after a global power outage because people wouldn’t know how to communicate with each other in person any more. I would say at this point my prediction is not too far off. We now communicate with people we don’t know, people without a face, without a common ground and we communicate impulsively. People attack, people complain, people see an article about some way that the world is going to destruct and they post it on social media with no productive suggestions about what the reader of that post can do to help said doom and gloom problem. It chips away slowly at the soul, at the majority of the world’s population’s souls and feelings of hope. We have a whole generation who has known nothing but war, PTSD sufferers, poverty, people using opioids to self-medicate and we are all talking at each other. And comedic snark is not allowed. To respond to someone with good humor or less-than-careful verbiage is inevitably going to cause others to attack. Everything is serious, everyone is serious and everyone is offended. We don’t know what or who we are going to offend but someone will be offended, and in the name of diversity but creating grand-scale division. Political correctness and walking on eggshells so as to not offend someone from some pocket of a movement that we were once all in together is in my opinion doing the opposite of its original intention and instead making all of these small pockets under our large rainbow umbrella, where, if you use a word that is fine in one, [it’s] guaranteed you will come under attack from another small pocket. Shutting down a conversation instead of opening it up to questions does not encourage learning and growth; it discourages asking and understanding. That’s not to say that I don’t recognize such important progress being made, but I do also recognize people wanting to broaden their scope of acceptance without feeling they can ask about what they don’t yet know and receive an answer grown from kindness. These are beautiful missed opportunities for teaching moments.… • AUGUST 2021

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The Box. Courtesy of Cornell University’s Human Sexuality Collection Recently I was accused of not being diverse enough by not putting a biracial kissing couple in my photograph of The Box for Page Hodel’s nightclub, which was taken in 1990 and not set up, simply an organic statement of the time. I have a young cousin who married her POC girlfriend and, as is the way of the generation, she wrote something very serious on Facebook about how serious this was and she was praised by her friends for her seriousness. Everything she said was right, of course, but I watch these new crops of adults being so serious. I grabbed on to this as a teaching moment. I commented on her thread; I said that we worked hard and tirelessly for her and her girlfriend to have the freedoms to live the life they are living, but that we didn’t mean for our successors to take these freedoms as a no-laughing–matter matter. I said we worked hard but we also had fun, we partied, we did a lot of drugs and that I hoped that she and her future wife would go out to the woods, do some mushrooms and have some fun. A little while later she posted something about camping and added “and cousin Jessica, you would have been proud of us” and I was! When people look at my work, I want them to see warriors during and after a war. I want them to notice that nobody is holding a phone….That people of every color were living a colorful life together under our beautiful and incredibly diverse umbrella. That we were asking for acceptance with honey, not with vinegar. That we were inclusive, not exclusive, and creative and engaged with our environment, not staring at screens, not attacking strangers with impulsively typed words. The job of my work was to invite the viewer in to face their fear of a world they didn’t understand and to see its beauty without threat. A teaching moment. To be offended is a choice. How it is handled is a choice. We chose to lead with love and humor and filth. We fought hard and decompressed hard. We were grabby and sexual and completely inappropriate and misbehaving madly, AUGUST 2021 •

taking offensive terms and owning them. We put our big boy pants on when changing our friend’s diapers and talking them to their other side because, in those days of ugly disease and daily death of friends shunned from their childhood homes and biological families, our families of choice had to be so intimate and so strong and we are still bound by those ties. I am so disheartened to see what is happening now, our younger communities are intentionally divided. When asked how I prefer to be identified, my answer is usually either a respectful non-answer or, to those who know me, “Cock Sucking Lesbian” tends to sum me up. I hope those who choose to be offended put down their screens, grab someone from another pocket of our enormous and colorful umbrella and go to the country, do some mushrooms, have some fun, enjoy life and be one again. Our umbrella has grown a honeycomb of barriers since I took these photographs; we are fighting with each other. It is beautiful to see people becoming comfortable in their own skin, but it’s hard to see those open to learning not feeling comfortable in trying to do so for fear of the blowback. The nostalgia, the hunger to learn [about] that time is I think a hunger to learn of our many-years-long Summer of Love and Death when “something happened,” that I had the good fortune to help capture in images. Log on to tanzerphoto.com for more info and join the mailing list if you would like to be notified about upcoming exhibits, news, and when the e-commerce site (tankhillcrew.com) goes live. Follow Jessica Tanzer on Instagram @jessica_tanzer. Chael Needle is Managing Editor of A&U.

A&U’s Hank Trout interviews Brian Malloy about his new novel about an AIDS widower, After Francesco

hen we think of “long-term HIV/ AIDS survivors,” we usually think of those of us who were diagnosed with HIV early in the pandemic, before the 1996 advent of HAART, who managed to survive and are still alive. However, there walk among us hundreds of thousands of HIV-negative people——our husbands, lovers, families, friends, caregivers, and more——who lived through those indescribably horrible early years of the pandemic, who experienced the same fears, confusion, governmental indifference, anger, grief, and losses that we HIV-positive folks experienced. They are survivors, too. Their stories, though rarely told, are every bit as gripping, as compelling, and as important as any PLHIV’s stories. Fortunately, acclaimed author Brian Malloy has given us one such survivor’s story with his latest novel, After Francesco (Kensington Books), a very moving, poignant, sometimes funny, sometimes gasp-inducingly shocking novel about love, loss, recovery, redemption, and moving on. It is an achingly beautiful portrait of a man driven to the depths of despair (and the bottom of many vodka bottles) by the loss of his partner to AIDS. We meet Kevin Doyle in 1988, in New York City, two years after the death of his partner Francesco, a meticulous comic book artist. Kevin is still grieving, and trying to drown that grief in vodka. After the second time Kevin lands in the emergency room with alcohol poisoning, and after losing his job and receiving an eviction notice, his friends are frankly fed up with him. With their encouragement, Kevin returns to Minneapolis, his hometown, to stay with his crusty but soft-hearted Aunt Nora. He reconnects with a high school buddy and other friends and, with the help of a support group for “AIDS widowers” and other friends, slowly begins rebuilding his life and relationships. After a shocking family betrayal (Francesco’s sister-in-law is heartlessly cruel), the impending death of his best friend calls him back to New York. As he settles into a job at GMHC, becomes active in ACT UP, and opens up to a relationship with a new love, we leave the novel hopeful, if not fully certain, that Kevin will continue build and grow into a new post-Francesco life. Author Brian Malloy is an activist and an award-winning writer of four novels (winning the ALA Alex Award and the Minnesota Book Award) who earned his MFA at the University of Minnesota and currently teaches creative

writing. In the 1980s, Brian worked for the Minnesota AIDS Project and helped organize the state’s first AIDS Walk in 1988; in the 1990s he founded the Minnesota Lesbian and Gay Community Funding Partnership. He lives in Minneapolis——as the author’s blurb in the book puts it——“with his husband and their rescue mutts.” A&U corresponded with author Malloy for this article. Hank Trout: Another writer has said that every work of AIDS-related fiction to come out over the last three decades or so has been at least partially autobiographical. Is that true of After Francesco? That is, are there any of Kevin’s or other characters’ experiences that you have also had? Brian Malloy: I think the autobiographical element in these novels used to be the case, mostly because the only novelists interested in writing about AIDS were gay men who had personal experience with the disease (many were living with HIV/AIDS), or African writers like Zambian novelist Mubanga Kalimamukwento, who lost her parents to the disease. But now there are books like The Great Believers and We Are Lost and Found which do not have any autobiographical elements. It’s important for those of us who remain to write down our experiences so our voices are included in the history that we lived. Otherwise we are left with a redacted history, or an imagined history, such as in 2016 when Hillary Clinton praised the Reagans for speaking out on AIDS when no one else would, thus beginning the “national conversation” about the disease. Seriously, I’m a fiction writer, and I can’t make this stuff up. Kevin and I had many similar experiences: volunteering, caregiving, activism, heartbreak, and rage. In the 1980s I worked at the Minnesota AIDS Project, and was a caregiver for my roommate, who died in our home in 1991, ten years after the first CDC report. So, yes, some of the events in After Francesco are autobiographical, others I witnessed, and others I created based on contemporary accounts of real events by the people who participated in them, like ACT UP’s takeover of the FDA (I was not at that action). I remember that as the pandemic was getting worse and worse, and we suffered so many losses, many of the people around us • AUGUST 2021

photo courtesy B. Malloy

A Survivor

r’s Story were full of well-meaning but useless advice about grieving and healing. I was impressed with Kevin’s ability to tune out the useless advice and to recognize that we all grieve and heal in our own ways. But Kevin’s “own way” turns very dark and self-destructive. What factors in Kevin’s life pushed him down that dark path? Why did you choose, as the writer, to send him down that path? In the book’s first act, Kevin nearly dies of alcohol poisoning, which is the catalyst for his friends to intervene (along with the fact he was fired from his job and being evicted). Kevin’s strategy to manage his grief over the loss of Francesco was to isolate and self-medicate, and you can see where that got him——the emergency room (twice). Why was his way of coping so self-destructive? Kevin was born during the Eisenhower Administration and raised to be a man, and men don’t talk about their feelings or ask for help. In other words, he’s a product of his generation, from a Catholic working-class background, and with a family history of alcohol. I sent Kevin down this path because it’s a common one for men of all economic backgrounds: our depression often manifests itself in anger, irritability, loss of interest, and isolation. If you’re raised to “be a man” a therapist or a support group may be seen as being weak. Kevin resists even talking about Francesco with his closest gay friend and is forced to go to a support group by his overbearing but well-meaning aunt.

and kindness, as well as moments of teary introspection. Have you ever experienced that dichotomy——in, say, a friend who is grieving the death of a lover? Have you, as I have, ever had moments of explosive rage over the pandemic? Kevin’s philosophy is to be “nice to people, so long as they are not being dicks.” It’s a philosophy Kevin and I share. Kids are told to walk away from bullies, that it is the mature thing to do, the adult thing. I was not raised that way. There’s an expression in boxing: “Be First.” Throw your punches before your opponent, be aggressive. For the most part, being aggressive and not backing down has led to the dicks walking away, though my husband despairs of this trait in me. Unlike what we are taught, I think bullies enjoy being bullies, and when you walk away, you only increase their high regard for themselves. When you don’t submit to their bullying, maybe they begin to understand that there’s a degree of risk associated with being a dick. That said, if it’s a certainty you’ll get your ass kicked, walk away, or better yet, run like hell. There was such a range of emotions I experienced, including guilt, kinship, helplessness, heartbreak, fear, courage, and empathy, along with a smoldering rage for those who got to live out their twenties as most people continues on page 41

Kevin’s return to Minnesota reminded me that there seemed to be a lot of migration in our community in the first and second decades of the pandemic, with guys leaving big cities for smaller towns to “avoid” the virus, guys moving to the big cities for more knowledgeable healthcare, some guys coming back, some going back home to die among family, etc. Did you experience something like this, having several friends moving away, either temporarily or permanently? My most memorable experience with relocation was when the Arkansas Department of Health decided the best way to treat a gay Arkansan with AIDS was to buy him a one-way ticket to Minneapolis and give him the address of the Minnesota AIDS Project. The man knew no one in Minnesota. We found him a place in our housing program and connected him with volunteers and medical services. Another young man wound up in our housing program because his parents made him live in a tent in their backyard. Often our clients became our clients because their families rejected them, and they relocated to Minneapolis for social support, medical expertise (such as there was at that time), and a roof over their heads. My friends who moved away generally headed to New York, in particular Alphabet City, which I visited a lot. In their cases, they wanted more opportunities as artists or writers, or just the excitement of New York. Several of them live in New York to this day. Kevin has a rather quick-triggered temper; this comes out sometimes in his sarcastic comments to his friends and family, sometimes in bursts of genuine rage at those same people. Yet, we forgive him his worst behaviors because his rage feels earned——we understand his rage because we’ve experienced that rage, we recognize it. But Kevin is also capable of acts of real compassion AUGUST 2021 •

CHORAL In Let the Record Show, Writer & Activist Sarah Schulman Brings Together the Voices of ACT UP New York by Jay Vithalani Photographed Exclusively for A&U by Stephen Churchill Downes

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HISTORY

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n a sweltering July day, I meet Sarah Schulman to talk about her new book, Let the Record Show: A Political History of ACT UP NY, 1987–1993 (Farrar, Straus & Giroux). It a large book, done on a large scale. It is not, however, an encyclopedia. Every part of the subtitle matters, from the indefinite article “a” to the terminal date “1993.” The primary material for Schulman’s book is the ACT UP Oral History Project, a series of nearly 200 interviews she and filmmaker Jim Hubbard conducted from 2001 to 2018 with surviving members of ACT UP. Let the Record Show is necessarily a choric work, layered with voices (including the author’s). This quality makes the work difficult to capture in summaries, reviews, interviews——which perhaps explains why commentaries so far have concentrated largely on, and quoted almost exclusively from, the Preface and Introduction, a non-narrative distillation in which Schulman outlines her intent, method, structure. Schulman has the calmness and easy eloquence of someone who’s been interviewed many times. (I apologize, twice, about potentially asking a few bog standard questions for which—— as the record shows——the response could simply be “Asked and answered!” She smiles and says, “I’m a professional” the first time, and “It is what it is” the second.) Along with this comes an Erin Brokovich-like capacity for recalling details about the dozens of people she writes about. This is not at all to say that her tone is one of polite urbanity or that her conversation is passionless recitation. Moments of shaking-myhead exasperation, combative bewilderment, constantly shine through. Schulman is not given to self-deprecation, and she is unflinching when it comes to defending her historiographical practice. Before we started the interview, I give her a copy of A&U’s August 2000 issue (Kevin Bacon is on the cover), in which she had been featured: an extract from her novel, The Child, and an interview about writing lesbian fiction in the age of protease inhibitors. As she pockets the magazine she says wryly, “These photographs look familiar. I haven’t made a lot of money in the last twenty years. I still live in the same rented sixth-floor walkup.” The following extracts have been edited for lenghth and clarity.

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Jay Vithalani: First things first——congratulations! Let the Record Show is your twentieth book. And it has received a great deal of attention and praise. Sarah Schulman: Thank you! You’ve been writing about AIDS for a long time now, nearly forty years. How did that come about? I started working for a series of gay underground newspapers in the late seventies. These were gay and feminist papers that the mainstream ignored completely, and I was a girl reporter, twenty-three or twenty-four. The identification of what we eventually called AIDS began in 1981. I started writing about AIDS because that is what was happening. I covered pediatric AIDS, women being excluded from experimental drug trials, homeless people with AIDS. By the time ACT UP was founded in March 1987, I had been writing about AIDS for about five years. After I left ACT UP in mid-1992, I continued to write about AIDS. I wrote a book about gentrification, the relationship between AIDS and gentrification. I covered HIV criminalization. In 2001 Jim Hubbard and I started the ACT UP Oral History Project. So, I never stopped. I’ve spent my entire writing life writing about AIDS. But it’s not the center issue for me, it’s a side thing. Now, that’s really interesting. You’ve never stopped writing about AIDS. Let the Record Show has been called——some quotes from the dustjacket——“a definitive and monumental history” (Michelangelo Signorile), “a masterpiece of historical research and intellectual analysis” (Alexander Chee), “epic, important,

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and moving” (Eve Ensler). And yet it’s not a central preoccupation? A lot things I say in Let the Record Show are things I’ve been saying for decades. It’s about men, it gets a better publisher, it gets more attentions, I get a higher level of access, and people now respond, “You’re so smart!” Some of the ideas are not even my ideas, these are the ideas of a whole community. How does this relate to your cultural and political criticism, as well as your fiction? Because I’m a novelist, I know how to tell a story that works cumulatively and a lot of nonfiction writers don’t know how to do that. I’m able to build the information, and that’s why it’s readable. I have the skill to do something that’s in a horizontal structure. However, emotionally and artistically it’s a lesser project, because I’m not looking into my soul to produce an idea. My job is to represent other people in a way that is accurate to who they are and what they say about themselves. There are a lot of people in the book I don’t like, don’t agree with. But I don’t think you could tell which ones, because I think I was very fair. And that was my job. Let the Record Show is really not about me, and the other books are. I don’t even remember writing this book. Wait——you don’t remember writing this book? It sprang from your head like Minerva? One memory: I was at MacDowell and I remember looking at the printer. But I don’t remember struggling. Because I had the original material and then I did a sort of mathematical cohering of what was in that material. I found the structure for it. But it’s all about facilitating other people and so it’s not as difficult in some ways.

important. And people make mistakes all the time and people are wrong all the time. In the Introduction you say that one uniting feature of ACT UP members was characterological. Could you tell me a little bit about that? When Jim Hubbard and I started the Oral History Project, one of our big questions was “What do these people have in common?” At first we thought it was going to be experiential. If you analyze the questions over the years, they change. In the first three years I asked, “Did your family go to church? Were they community oriented?” I was trying to find that kind of pattern. But it wasn’t true and we had to drop it. Then we thought maybe everybody had some foundational AIDS experience. And they didn’t. People who didn’t know anybody with AIDS came to ACT UP. After about seven years I finally realized it was a type of person, the kind of person who couldn’t be a bystander, that it was characterological. It took a long time to figure that out. One way to read the book is as a counternarrative to David France‘s How to Survive a Plague. Much has been made of that. But it’s not only that. It’s part of a larger problem. For example, when I wrote an article for T Magazine, the gay male editor changed “ACT UP” to “Larry Kramer’s ACT UP.” It’s an American thing. Now we have the mythologizing of Anthony Fauci——there’s always a white man who’s going to save everybody. And David did that too, and other people do that. But nothing works that way, it’s not accurate. Related to this, the reaction that there is a distortive recentering or overrepresentation in your account? I don’t agree that I recenter, I think that’s inaccurate. People say, “Oh, you’ve foregrounded women and people of color.” I did not. I just said what they did. If you just say what people in ACT UP did, you get this very diverse, complex spread; and if you hide what they did and only show five people, it’s not accurate. I don’t think that I overrepresented anybody. Most of the people in my book are white men who’ve never been historicized before.

You give voice——many of the actual words in the book are not yours, they’re words you’ve preserved——to a motley crew. It’s a very special group of people. They’re highly individuated. They disagree about a lot of things and tell the stories very differently. And that’s the reality, that’s the history. That’s the part you can only show, you can’t just say it. The reader has to experience that. You know how, when you take a creative writing class and they say, “Show, don’t tell”? The reader really has to inhabit all the contradictions, as they’re reading, to understand what the group relationship was like. But ACT UP activists are also normal people. They are not “clean” people. And normal people can change the world, and that’s very important to know. You don’t have to be a saint. It’s also very important to say when you were wrong. Very, very

Turning to accuracy and inaccuracy. Ben Ryan, in his review of the book in The Guardian, has said that you can be cavalier with facts. How do you respond to claims that you’ve made factual errors? Let me first say that I’ve had many book reviews, I’ve written twenty books, I’ve had hundreds and hundreds of reviews, and very few reviewers actually see the book the way I see it, whether it’s praise or criticism. The most helpful review I’ve ever had was a critical review by Vivian Gornick of Rat Bohemia, where she said that these people are not bohemians, because bohemians choose to opt out of bourgeois life, and these people were thrown out. And I thought, “Wow, that’s right.” I learned a lot from that. My book is an oral history. What oral history “proves” is that this is what • AUGUST 2021

people say about their experience. It doesn’t even prove that this is really what they think about their experience. So, it’s simply a record of what they say about it. It can seem nothing more than that, but when it’s critical mass——in this case I think there are 140 people I use in the text——you really start to see dimensions and shapes and patterns. And that’s revealing, it’s larger than anything one person says. You don’t fact-check oral history. Because it’s not fact. It’s only the fact that the people who lived the history said that. Oral histories are not new, they’re not controversial. Ben was very odd. He called at least five people in ACT UP to claim that I did not do fact checking. Primarily, he seems to not understand what oral history is. Clearly, it reveals disagreements, contradictions and the fact that there is no single truth. Why he could not comprehend this is unclear to me. You wrote an opinion piece for The Guardian which received some pushback from two prominent gay British activists, which then got amplified on social media. That’s crazy.

social justice stories to the screen at a very high level. The combination seemed perfect. Then we had to get a writer. We sent out the material to a lot of writers. And, really, everybody was afraid of it. Any names you can mention? No. But I would say probably about twenty writers. TV writers aren’t political. This is also formally complex, it’s not about five people on a journey, it’s about a community. And unless you count Game of Thrones, there aren’t many models for that. Andrew really wanted to do it. So I started looking at the history of his work. It’s very classy. Weekend is a classic, and it’s very relational. Andrew reveals social realities through intimate relationships. Then he turns around and does 45 Years, with Charlotte Rampling, and gets an Oscar nomination. He also did the HBO series, Looking. He has a very wide palate. So it seemed like a really good match. We’ll see. He hasn’t finished the pitch yet, so it hasn’t been put up for sale yet. I don’t have a sense of a timeline. When the manuscript was finished was there a bittersweet moment? Letting go? I don’t think so, no. When a book of mine is printed I read it again, then I never read it again.

All right, tell me why that’s crazy. These men are saying that I was saying that I was writing gay men out of AIDS history? That is not an accurate representation of what I’m doing. I think that it’s some kind of kneejerk sexism. “You’re going to take something away from us.” I’m actually affirming them. They’re just so sexist they can’t just let it happen. Too bad for them. Hopefully, they’ll read the book and they can send me an apology. The book is mostly about gay men.

That’s very Elizabeth Bishop. Very Elizabeth Bishop?

So the issue now is that of “erasure.” Michael Specter in The New Yorker suggests there is erasive vein in the book. Michael Specter is gatekeeping. I mean, it’s sad. The New York Times allowed the book to be seen for what it is, New York Magazine allowed that. But the last bastion, where white straight men are in control, is The New Yorker. When David Remnick [editor of The New Yorker] interviewed me, he was all about Tony Kushner, Anthony Fauci, Larry Kramer. He didn’t mention any of the 140 people who the book is about. The gatekeepers are so afraid they’re going to lose the sense of themselves as objective and neutral. And heroes of the world. Specter says I’m wrong. It was a little group of five men who did everything. And actually, “No, you’re wrong!”

I doubt that’s what going to happen to you. But what’s next for Sarah Schulman? Oh, a lot. I have a new novel, a lesbian novel. I’ve finished a movie script about Carson McCullers. A young director has taken a shopping agreement on it and it’s being packaged by her apparatus. I have a bunch of plays that I’ve been trying to get produced for years——still trying. I’ve also been working with Marianne Faithfull for the last number of years.

The title of the review in the Times Literary Supplement, “Kramer vs America,” is a faux pas, I think. Regarding the TLS, as many people have pointed out, the reviewer [Omar G. Encarnación] clearly did not read the book, because the claims he makes in his opening paragraphs are refuted as early as the Introduction in Let the Record Show. It’s hard for reviewers to complete a 700-page book, but when they agree to review it they are promising to do so.

Well, with so many projects going on at once, some finished, some simmering on the back burner, others being conceived right now. I don’t think I’m a workaholic. I think that a lot of my work doesn’t get to the light of day. I have to fight for it for years and years and years. I also think that writing is very easy for me. So, in that sense I don’t have to be a workaholic.

I’m going to shift gears a little bit. A TV series based on Let the Record Show is in the works, with Andrew Haigh as director and showrunner——exciting news! Tell us about that project? I was approached by Christine Vachon, a major player in world cinema, and a former member of ACT UP. Her partner, Marlene McCarty, was the only woman in Gran Fury [an artist collective of AIDS activists, 1988–1995]. The chance of having a woman producer who was in ACT UP means that the chances of the show being authentic are much higher. Christine brought in Jonathan King, who had done When They See Us on TV. He also did Spotlight. So here’s someone who has a lot of experience bringing AUGUST 2021 •

Yeah, that’s what she said about her poems. Once she finished writing and revising and publishing them, they were finished objects, done. I hope I don’t end up like Elizabeth Bishop, she had a terrible ending. She drank herself to death.

It sounds like you’re a workaholic. Really?

But you are going on a much-deserved vacation soon, yes? Yes, to Hudson Valley and Provincetown with my girlfriend. Counting the days! For more information about the photography of Stephen Churchill Downes, visit: stephenchurchilldownes.com. Jay Vithalani grew up in Mumbai, India. He studied English and philosophy at Amherst College and Harvard University, and has also done graduate work at the University of Iowa and Boston University. Vithalani is the co-author of a book of industrial history, Horizons: The Tata-India Century. He currently lives in New York City. Vithalani has been living with HIV since 2005. He is the Nonfiction Editor of A&U.

Fruit

of our

• AUGUST 2021

s a Vietnamese proverb reminds, “When eating fruit, remember the one who planted the tree.” Christopher Hewitt, who would go on to become the magazine’s first literary editor and for whom we named this contest, appeared in our very first issue (as did current Fiction Editor Raymond Luczak, by the way). As both a contributor and an editor, Chris helped lay the foundation of what would become the premier platform for HIV/AIDS-themed literature. We feel a sense of deep gratitude to Chris, as well as all the writers who shared their work with us over the years. Importantly, we honor those individuals living with HIV/AIDS whose experiences sprout in this creative work——they do or did the work of living that precedes any creative work. Thank you to judges Raymond Luczak, Bruce Ward (Drama Editor), Philip F. Clark (Poetry Editor), and Jay Vithalani (Nonfiction Editor). Thank you as well to all who submitted to the literary contest and to the winners: Carolyn O’Donnell, David Mohan, Christina Robertson, and Paul William Kruse. And, dear reader, as you enjoy the fruits here, remember those who planted the trees. —Chael Needle

Fiction

by Carolyn O’Donnell

The Gift

toy koala sits on a shelf near my bed. This little bear has sat there, watching over me, for nearly thirty years. When I stop to look at this little bear, maybe not every day but at least every week, sorrow surges for the loss of Nathaniel, who gave it to me. Or rather, he willed it to me after he died. Some weeks after the funeral, a lawyer rang to say that there was a bequest, and I could come to the office to collect it. It was an unknown process: no one had ever left me anything before. When my grandparents died they did not remember me; or perhaps my mother had instructed them not to. I signed for the little bear, and on the train afterwards tears slid soundlessly down my face and the ticket collector, with mute sympathy, placed a sticker on the bear’s head saying Special Passenger. Nathaniel and I had met through mutual friends on the fringes of the arts world, and I was entranced by his commitment to personal style. Before Hugh Grant flopped his hair through a series of romcoms, Nathaniel had already mastered the eloquence of an artfully disheveled thatch. His profile was mysterious and perfect like Mount Fuji in a woodblock print by Hokusai. Next to him, I felt like a raccoon that had crawled out from beneath someone’s house. But I basked in his wit

AUGUST 2021 •

and kindness like a glossy Burmese cat. Nathaniel’s passion for the transformative power of couture was expressed through a barely paid job running the costume department for a small theater company. With his slender, exquisitely proportioned frame, he showed the actors how to carry off a double-breasted suit in a Noël Coward revival. How to look like a Yale man in Anything Goes. When he made his drag debut as a towering Diana Ross with eight-inch heels and a gravity-challenging beehive, I cheered for him. One of his dreams was to see the real La Ross on stage, so when I landed tickets, Nathaniel accompanied me, vibrating with enough excitement for the two of us. Nathaniel lived with his extensive wardrobe in a small apartment not far from the home I shared with my flea market treasures. Bond cemented, we spoke nearly every day. He exposed parts of his life fully and intensely, while others remained shadowy, glimpsed in the flickering spaces. It was understood that families did not always understand or approve of our choices. I rarely spoke to mine, Nathaniel rarely mentioned his. I gleaned he was related to people who did important things in law and business and lived serious, gilded lives. When his parents went abroad on a trip, Nathaniel was trusted to mind the house. With a suitable venue to entertain, he hosted a formal dinner party – the one occasion I ever saw him attempt to cook. As the sole proper girl, I was honored to be included. Our little group toured the discreetly luxe mansion, cocktails in hand,

squealing from room to room. We pretended to be grown-ups around the enormous dining table beneath the Murano glass chandelier, chewing to Mozart and using crockery that cost more than my car. The food almost superfluous, we were high on the decadence of this exotically privileged world. We giggled hysterically over the floor-to-ceiling vase cupboard, though we were silenced by the silver-framed photo of Nathaniel’s aunt at a horse racing event with Queen Elizabeth II. Together we flounced through many a soirée, but Nathaniel saw what lay beyond martinis and repartee. When I spent a birthday in the office, he was the only person who ever had a box of pink roses delivered to my desk. At a certain point during many of our evenings together, Nathaniel would say he was fading, and wanted to go home. At first I put this down to fatigue, then I thought he visited clubs where I was unwelcome. Maybe he just had plans he didn’t want to explain. There was a party where I was feeling sorry for myself, so I drank too much and allowed a man to kiss me. This meant nothing; what I remember most vividly was Nathaniel’s desolation and my own flushed regret. We realised we both needed things the other could not give. There were too many feelings. We had our secrets and they needed distance. Until time ran out on Nathaniel’s secret. His body had turned on him through four long acts, and now this tragedy had reached the denouement. Dulled by my

own despair, I’d failed to notice he was ebbing away. The knowledge sat in my gut like a dense, clammy stone, malignant with the betrayal of my neglect. I drove to the infectious diseases hospital along sinister streets in an unfamiliar area. Leaving the car in a dark parking bay, I approached the shabby entrance as distressed, drained people slipped past me, each sealed off by grief and fear. A nurse gave me directions to Nathaniel’s room, and I edged down a dim corridor of sarcomas and lesions and terminal rasping breaths. Nathaniel was propped up in bed, frail and almost transparent like the crustaceans which live in the twilight zone of the ocean. His exhausted face was losing substance; his profile dissolving into the pillow. That was no surprise. What did surprise me was the other people in the room, calmly settled and reading or knitting or doing crossword puzzles among many vases of perfumed flowers. They glanced up neutrally as I made my way to Nathaniel’s side and I saw the effort he made to find the energy to welcome me. We gazed at each other, and time and distance dropped away. “I’m so very glad you’re here my love,” he said in a husk of his dear voice. “Even in pajamas, you’re still the most dashing man in the room.” Nathaniel made a small choked sound of appreciation. “This old thing?” he murmured, plucking a sleeve. “As Oscar would say, you can never be overdressed.” He patted the bed, and perching there, I clasped his precious hand. “Are you ready for introductions?” I nodded. The other visitors looked up, shifted in their seats. I hadn’t really paid that much attention to them, apart from sensing that Nathaniel was the fragile magnet which drew us together. An older man in a herringbone jacket with a full gray mane rose to his feet, as did an impeccably groomed woman in a floral silk dress. They smiled and stepped forward as I turned towards them. The affection in their eyes kindled a warmth that spread through my body, my dread easing as the scent of honeysuckle caressed me and sweetened my blood. The couple stepped forward to shake my hand, and I already knew who they were. I had glimpsed their lives from afar; now we encountered each other as grieving souls on a shared journey. “Anna, this is Winston and Ingrid,” said Nathaniel softly. “I want you to meet my parents.” Carolyn O’Donnell is a writer and journalist who grew up in Australia and was passionate about the arts from an early age. After moving to London, U.K., she worked for The Times and The Daily Mail, and has won an award for travel writing.

Drama

by Paul William Kruse

Once Removed Synopsis: Once Removed is a documentary play for solo performance. In an effort to understand his own Queer history, playwright Paul William Kruse uncovers the story of Jeff Mayne, his mom’s cousin who was lost to AIDS in 1993. Once Removed weaves together phone calls, memories, and historical research to connect two gay men from the Upper Midwest, separated by a lost generation and a legacy of silence. The following is an excerpt. Audio files for recorded interviews are mentioned by name in the following. All recordings can be found here: https://www.paulwkruse.com/once-removed-au. Please listen as you read! TELEPHONE A Diana Ross song plays and then fades. PAUL:

The first time I said the words, “I’m gay,” out loud to another person I was on the phone. I was absolutely terrified. I’m sure I actually said something more like, “I think I’m gay.” Or “I think I might be gay.” Or “There is a very distinct possibility that I might not be straight.” Right now, I’m alone. I’m wearing a pink shirt. Pink is my favorite color. We’re in a pandemic. Hopefully, it will be over when you read this. Lately, I’ve been feeling very lonely. So, I’m trying to call my mom more. We talk on the phone once or twice a week. There is a bright orange rotary phone in the basement of the house where I grew up. It’s installed on a wall near a bookshelf full of photo albums. In the back of one of these albums, there is a family of blonde Minnesotans. Their picture was taken some time in the late seventies or early eighties. They’re sitting on a deck next to a picnic table. The sun is shining down on them. It looks like they just had lunch. These are my mom’s cousins. She likes to say all their names together, and it’s pretty clear why. They are Jim, John, Jane, Jeff, Joe, Jerome, and Jake. Their last name is Mayne, like the state, but with a “Y” instead of an “I.” Jeff Mayne, the middle brother, is missing from this picture. I’m not sure where he is. I can’t stop thinking about him. As far as I know, Jeff and I are the only members of our extended family who are gay.

Jeff and I both grew up in the Upper Midwest of the United States. Jeff was from a town called North Branch in Minnesota, which is about an hour north of the Twin Cities, depending on traffic. I grew up in La Crosse, Wisconsin, which is about three hours south of that on the Mississippi River. To give you a sense of what it’s like to grow up in the in Midwest, The other day I accidentally ran into the kitchen table And my first instinct was to apologize to it. I still feel very resentful. We’re working through it. The midwest is a place where arguments happen through smiles, cheese is a food group, and you enter most rooms with an apology. • AUGUST 2021

I’m second oldest of four boys. Not as impressive as seven siblings like Jeff, but not too bad. As I get older, my life looks less and less like my brothers’. They all have wives and kids. They own their homes. I always knew my life would be different, even before I knew I was gay. Growing up, I was more likely to play make-believe than football, more into the color pink than the other boys. I had my senior pictures taken holding an actual sword. My mom says I was sensitive. I felt like I was never totally sure how to be in my own skin. I still feel that way sometimes.

You know, some frustration at that end, you know, and and emotion at the end, just, you know, damnit, PAUL: Yeah. JANE: you know. Damnit! This is——This is going to take me out—— PAUL: Yeah. JANE: kind of thing, not ah, not gonna——not gonna win. And he liked to win. And he liked to be right.

I wonder if Jeff felt this same way. We never got a chance to meet. Jeff left home in his twenties and moved to LA, where he contracted HIV. He then moved back to live with his mother, my great aunt Dolores. He died in her house in 1993 at the age of 31. I wonder if my mom was thinking about Jeff, when I came out to her.

The more I learn about Jeff, The more I want to lay my life down next to his and compare.

JANE: When he moved home from California to die, essentially, Um, Ah, he moved in with mom and Jerry, and um, she was substitute teaching a little bit then, and they stopped calling her to teach. PAUL: hmm. JANE: Um, because, you know, “Gal, there’s someone with AIDS living in your home and we just don’t know what to do with——” That wasn’t really spoken, but that was her—— her assumption of it—— PAUL: Yeah. JANE: Of, of why she wasn’t getting called anymore. PAUL: Yeah. JANE: And my children were probably—— oh let’s see. Bob was born in eighty-one. So, Bob was, you know, eight or nine or ten, when Jeff came home. PAUL: Yeah JANE: And Andy was a—— Our other son was a couple years younger. And, you know, we talked to them at length about, um, about AIDS, and you know, some people have ah, you know, marry wives and are—— marry women and have- are, you know, are are attracted to girls and some are attracted—— some people are attracted to boys. And Jeff, you know—— Jeff is gay. And he has a——a very——you know, a very sad disease. And he isn’t gonna live forever. And, um, so, they got really close with Uncle Jeff. And ah, he, of course, was doing all kinds of treatment and stuff, while he was living with mom and—— You know, of course, losing weight and——um—— but he was just fanatical about protecting everyone else. And——Um——Mom and Jerry had some kind of wood floors. And um, we were——we were there and my, you know, my young kids with me, and he’s like, “Wait! Everybody stand still.” And he thought there was a spot of blood on the floor. PAUL: Oh. Wow. JANE: Um, and it it was water. It was just a wet spot, but he wanted to be sure that everyone was, you know, protected, and was safe and stuff. Um, my youngest brother got married, I believe in August of ninety-one. And Jeff died in January of, or so, of ninety-two. PAUL: Jane later corrected this.

POSITIVE PAUL:

I was able to get in touch with Jeff’s only sister Jane to learn more. File name “Positive” plays, a telephone call.

PAUL: Did you and Jeff talk on the phone a lot, when he was in LA? JANE: Yeah. Yeah. I mean, you know, in the day it was long distance, you know, PAUL: Yeaaah. JANE: It wasn’t cell phones and——So, um, a lot? No. But ah routinely? Yes. PAUL: Yeah. JANE: I do recall when he called me and told me he was HIV-positive. PAUL: Oh yeah, what was that like? JANE: Yeah, well, it was scary, because, at the time, it was a death sentence. You know, you didn’t know anything different. And, um, I recall he, um, took the disease on as a project. And he went to every appointment and did all kinds of research, And, of course, this is before the internet, you know. And he——he, you know, would bring his little briefcase and—— (cough) and tell them what, you know, what kind of cocktail he wanted to try, and treatment he wanted to shoot for and——um—— He went over every bill with a fine-toothed comb, because he had a cap—— I’m going to say of a million dollars or something on his health insurance policy. And, of course, with all kinds of medication and treatments that can go pretty quickly. And I remember being at——ah——one of the places that I stayed with—— at, when I went to visit him and just the—— just the huge amount of pills—— PAUL: Yeah JANE: Huge, huge, huge amount of y——of pills. PAUL: Yeah. JANE: You know, various cocktails and, you know, of things. I didn’t sense a lot of thinking and feeling about it, no. AUGUST 2021 •

MOVING HOME File name “Moving Home” plays, a telephone call.

The wedding was actually August of ninety-two. Jeff died in ninety-three.

Jeff singing begins in the background and grows louder throughout the next part.

JANE: So, six-ish months or so. And, you know the, you know the Our Father song that’s sung at lots of weddings? (singing) Our Father, Who art in heaven. PAUL: Yes. Yes. Yes, JANE: (singing) Hallowed be—— (speaking again) Yeah, okay, that. So, Jeff sang that the at the wedding of my brother and some other songs too, but—— Um, at at one part there’s some pretty high notes and his little neck was so—— was so skinny. And he’s just—— belted that out. It was so awesome. He sang the whole thing and you could see him hanging on to the microphone stand, so that he would, you know, cause he was pushing all that breath out, so he wouldn’t pass out. And fortunately, we have a horrible video of it, because my husband was the videographer. And a fan was blowing over the, the old VCR thing, you know, at the time. But, ah he did, did get video of him singing it at the rehearsal, because he hit the high notes at the rehearsal, and he didn’t quite hit it at the wedding. But it was really awesome to see. PAUL: Jane actually shared that video with me, and you’re hearing that right now—— That’s Jeff singing. As he’s singing he’s holding on to the microphone and swaying back and forth. His brothers Jerome and John are sitting behind him. There’s a dark line that runs from Jeff’s cheek up the side of his nose to his eye. At first I thought there was something wrong with the video. And then I realized I was seeing his cheek muscle under his skin. He’d lost so much weight by this point. Paul William Kruse tells Queer love stories. As a playwright and media artist from Western Wisconsin, his work flows from his Catholic roots and ever-evolving experience of family. He is a founding member and resident playwright of Pittsburgh’s Hatch Arts Collective, co-founded with Adil Mansoor and Nicole Shero. Paul often writes collaboratively, drawing from his years of experience as a videographer and documentarian. He is a cohort member of Audible’s third Emerging Playwrights Fund. For more information: www.paulwkruse.com.

Nonfiction

by Christina Robertson

Again, I Am Left to Wonder

ooking over my life, again, I am left to wonder what if Christian hadn’t died so young? What if he hadn’t been gifted in a way that set him apart? If he hadn’t those wide hands, those plumb-weighted fingertips, coaxing perfection from the Steinway? What if, at Juilliard, only nineteen years-old, he hadn’t fallen for his teacher, or the teacher fallen for him, each in his own time wasting away, two more lives stolen by the abrupt hand of a nameless plague? And what if those early mixologists hadn’t created a cocktail that ultimately proved powerless against it? What if I hadn’t spent those last six months learning to knit, knitting an endless scarf, nine feet long, because he was cold? What if, instead, I had written a poem or a song, or framed a photo of us together as children, a quick shot of one of those many random moments caught by an amused parent: him, giggling, me looking bossy? If I had created any of these things and not a scarf, his mother might have chosen to include those in the cremation casket rather than wrapping him in the lovingly absurd muffler, my attempt at prolonging the inevitable. I could have kept a copy of any one of them. What if those six months hadn’t disappeared, become ash, then a whisper in the air? So often I ask myself, would I be living a different life if he hadn’t pointed out my insecurities and poor choices in the candid way only one who hasn’t much time left for chit chat can get away with? Would I have had the courage to divest myself of selfish boyfriends and unfulfilling jobs? Would I have whittled down my social circles from brutally hierarchical gaggles to a few really good eggs? Would I have found myself as worthy of better things as he found me? If he, a concert pianist, hadn’t died so young, would I have as intimate an attachment to classical music? If he hadn’t involuntarily sung along while he played, would my ear recognize music as a language? Would I be able to distinguish a musical gift? Would I have been able to boast brightly about him if he’d been a bank branch manager or an iPhone technician or a sales rep or a market researcher? Would I have included him in my novel——a novel I wrote in part because he knew I had it in me? *** If I hadn’t been with Christian when he died so young, I would have saved myself the piercing memory of his last moments; the turn of his head toward the light of that snowy January afternoon 1990, his struggle for air, his mother propping him up to relieve the pressure. Our

• AUGUST 2021

Poetry own rapid breaths as we swallowed down huge daggers of emotion, as we held his hands and feet and stroked his head of thin brown hair, encouraging him to let go. If I hadn’t been there, those images would only be from a movie and not my life. If I hadn’t witnessed Christian’s death, I wouldn’t have heard the story about the little girl dressed all in white he’d claimed was beside him, all the time, helping him, during those final days; I wouldn’t have seen his divorced parents embrace so lovingly; I wouldn’t, afterward, have been given the plant that grew at his back door and it wouldn’t be alive today, thirty years later, allowing me cuttings to share with others. If I hadn’t been there, I’d never know how the passage of a life could be, as his mother experienced it, like giving birth. If Chris hadn’t been subtracted from us so cruelly it would still be a foghorn in the distance; I mightn’t have understood the full consequence of AIDS, its impacts on everyone, on our broader culture; the blood and tears and phantom girls in white dresses that have gone into the creation of a revolution, its flag an astonishing story quilt. Sewn by fury, by grieving hands, telling of love lost——a luminous community lost——needlessly, while fingers pointed at them in their hospital beds. I very well might still be living in a world I believed would rescue me, like a princess or a child. I might not have been slapped awake and handed a torch. I might not have been brave enough to grow into who I am; my life wouldn’t be as complete, nor my heart as observing. I wouldn’t have believed I could sit at death’s bedside. I wouldn’t have believed in the existence of a reassuring spirit. I wouldn’t even have believed I could teach myself to knit. Yet, I did. A desperately long scarf, one he was to be swaddled in when he turned to smoke. Christina is an ex-clinical therapist who, after many years, has turned her attentions to writing. A member of Chicago’s Off Campus Writers Workshop, her work has appeared in the Ocotillo Review, Tahoma Literary Review, and Bellevue Literary Review, among other print and on line publications. Christina is fascinated by Nature’s painful beauty, particularly as it exists within people. In her heart she remains forever grateful to childhood friend Christian for inspiring and encouraging her pursuit of the arts.

The Blood Husband That first time we knew by the three spots of blood left in the snow outside your apartment, the style of night sky up above us... Drunk, we wanted wolf song, we wanted the rush of the hunt, the scent of a kill in the air, a hint of winter, in every touch. Some sort of town fox, you said, before our kiss, the first, enough to be smitten by, to swear oaths for, to see as a blood pact by the time you’d finished. Indoors, you were less mythic, another traveller, someone to keep warm with for a night. Your wrist watch became a moon at our bedside. I didn’t mind, next morning, when I roamed your apartment alone, collecting my clothes, conscious of bath rings, sad dawn light falling on dish towels, dust curls... It was always thus that a blood husband you wrestled with the previous evening transformed overnight into someone else, barely possessing a name, or forwarding address, becoming within weeks lost amidst the faces you see each time you close your eyes to sleep under the fractured light of some waning moon. —David Mohan David Mohan is a poet and short story writer based in Dublin. His poetry has been published in The Cincinnati Review, Spoon River Poetry Review, Lake Effect, Stirring, Measure, Superstition Review, New World Writing, PANK, and Dialogist. His poetry has been nominated for a Pushcart Prize.

AUGUST 2021 •

Spencer Reece continued from page 17

with Shakespeare. You write about the long process of becoming a poet——creating poetry, enduring many rejections, and yet constantly adhering to its call. Your first big break came from a call by Michael Collier at the Bread Loaf Writers' Conference. You quote Dickinson’s great Poem 112, whose first stanza is: Success is counted sweetest / By those who ne’er succeed. / To comprehend a nectar / Requires sorest need. // And from Bread Loaf your work became known, leading eventually to the publication of your first collection, The Clerk’s Tale, acclaimed by Louise Glück, who became a strong mentor/editor. What was the most important aspect of that acknowledgement in your life? Louise picking the book at the moment I was about to give up after fifteen years and 300 rejections, changed my life. My life took an entirely different course once she started calling the house. I love Louise. Beyond the incredible artist she is, she loved me, and well, that meant the world. The gift she gave me which I don’t think I would have taken to heart had she not entered my life was to attempt with each book to do something different, to undo what one had done before, to not do the same thing. That was a great slice of wisdom she gave to me. Had she not entered my life at that moment and been so adamant about that, I might have produced a second book similar to the first. Or a third similar to the second. I’ve tried very hard to challenge myself in the art as I have gone on. The Secret Gospel of Mark compels as a title; that reference has a duality of meanings: of the undiscovered, or hidden, but also that of excavation and revelation——a release of secrecy that leads to renewal. Was this in your mind as you developed the writing? I futz with titles and I write slow, so very often a book starts out with a different title. The memoir was called The Little Entrance for the longest time, but it wasn’t quite right. It was architectural. Matt Beavis at Oxford said to me once that I often start with architecture and then move to something more mystical when I title my books. The Clerk’s Tale was first called Distant Houses. The Road to Emmaus was originally called The Upper Room. Those original titles were like scaffolding. When I hit upon The Secret Gospel late into the writing I knew that was it. And The Secret Gospel of Mark being noncanonical and possibly gay-themed and most likely a forgery, all that appealed to me immensely. My third book of poetry that will come out with FSG in about two years is called Acts. And for the last ten years or so, the Book of Acts has fascinated me in the Bible. One of the most extraordinary aspects of your personal journey in the memoir is how many relationships you developed with so many poets who came into your life: Mark Strand, Richard Blanco, Gregory Pardlo, James Merrill——and those who continue to embrace your life and friendship. They each held very particular growth for you. Can you speak to the idea of such communion in poetry——the importance of such friendships? Friendship is a grace unto itself, there’s not the pressure of romance or the expectation. I don’t know what I would do without my friends. They’ve helped me so. Support is a subtle thing. And so necessary. Perhaps all my moving about has made me adept or flexible with being open to new friends. The tapestry is rich and full of so many friends. Now as I inch to fifty-eight, I’ve been instigating these festivals and series that often, very often, involve new friends and old and then involve making more friends. It’s expanding. Expansion is what I want for my life. My life in the decade between fifty and sixty has been the most productive regarding literary endeavors. Between forty and fifty I only put out The Road to Emmaus. Between fifty and now I have started an international author series, fundraised for an international festival, lead the volunteer team to do that while supporting a great independent bookstore, started another poetry

meditation series——The Red Door poetry and meditation series, here at St. Mark’s in Jackson Heights, fundraised for a documentary film about poetry, taught Honduran girls poetry in an orphanage, put their poems together in an anthology called Counting Time Like People Count Stars, I’ve published a poet’s memoir and a poet’s painted book of hours based on my watercolors, I’ve judged contests, taught a tiny wee bit, been one of the founders of the Lorca Latinx Prize for Latinx poets, published a wee chapbook, worked on several translations from Spanish to English, and all while being a priest for the last ten years. I’m surprised to write that list. The list will close with the publication of Acts right about when I hit sixty. Your story is also the story of your family, lovers, co-workers, teachers, mentors among many other relationships. Not all of them were easy to navigate, and there was often pain and loss. But in all of them, you found some sustaining aspect of love to adhere to, no matter how hard at times. The section “Follow Me” which continues your work as a priest in Madrid, begins: “Love, because I had love I gave love to a life I now loved. I clutched hands and flowers and phones and pens and a Bible insistently. I started blurting out ‘I love you’ randomly. I said it to strangers now. I could never say it enough. It would never be a mistake.” Love became a faith to you. How has it continued to define your current life as a poet, gay man, and spiritual mentor? Love isn’t what I thought it was. Or love has changed. Or I have changed. There are so many kinds of love. We can never hear about love enough. My love of poetry and painting and the people involved in those arts enriches my life. There’s a love of place. There’s a love of art. Here’s a love of people. There’s romantic love. There’s platonic love. There’s love for God. There’s love for pets. And on and on! Love can be messy. Loving people that are your enemies is what Jesus asks of me, and I sometimes fall short, but to try this, to try to expand love to those that are not necessarily easy expands the heart and soul, and that I want very much. The period of AIDS was a time of losses for you; and yet even in its presence, you held on to hope. How did that affect your writing, your poetry, in ways that you continued to manipulate loss——I am reminded of the last stanza in your collection, The Road to Emmaus, in the poem “My Grandmother’s Bible,” and the haunting last two lines: ‘when I saw the AIDS quilt, spread out in acres, / it was stitched with similar scripts by similar makers.’ / AIDS was awful as you know, Philip, for you lived through it just as I did. Nick Thorndike was supposed to be the poet you are interviewing here. We went to Bowdoin together. He was so talented. I would have bet money on him being the next great poet. He was so crazy for James Wright! And then AIDS took him early and his mother said it was up to me now and chills went down my spine. Maybe Marie Howe wouldn’t be the great artist she is had her brother not have died? What the Living Do remains one of my favorite books by a living author.Henri Cole, another great artist of our time, in his most recent Blizzard, writes of that pandemic brilliantly. I admire Howe and Cole very much as colleagues of my generation. I am so grateful I got to put Nick into this book. AIDS was a tragedy. And here we are on the other side of it now. Here I am. Grace. Philip F. Clark, A&U’s Poetry Editor, is the author of The Carnival of Affection (Sibling Rivalry Press, 2017). He is an Adjunct Assistant Professor at City College, New York, where he received his MFA in Creative Writing in 2016. His work has been published in Tiferet Journal, The Marsh Hawk Press, Lambda Literary, Vox Populi, The HIV HERE AND NOW Project and (RE): An Ideas Journal, among others. He recently read as part of the Phosphorescence Poetry Reading Series, hosted by the Emily Dickinson Museum. • AUGUST 2021

Brian Malloy

continued from page 27

expect to live out their twenties. Even today, when people talk about the challenges of aging, I have to bite my tongue: there is still so much anger I feel about the first decade of AIDS. We know that if this disease had been wiping out young middle- and upper-class heterosexuals, the response would have been very different. I did get in shouting matches, most memorably with fans of Sam Kinison, a so-called comedian who got rich with fag and AIDS jokes. ACT UP Minneapolis protested his Twin Cities appearance; it was hot, shit was said, and I was looking for a fight. Fortunately, ACT UP is non-violent and friends talked me down. Kevin grows more political as the novel progresses, becomes an ardent ACT UP soldier, occupying Trump Tower, and taking part in other actual historical protests in New York City. To what extent do you think AIDS prompted that kind of activism, channeling rage into action? We literally had nothing to lose. In 1983, the New York Native published Larry Kramer’s “1,112 and Counting” which begins with this unforgettable warning: “If this article doesn’t scare the shit out of you, we’re in real trouble. If this article doesn’t rouse you to anger, fury, rage, and action, gay men may have no future on this earth. Our continued existence depends on just how angry you can get.” I believe ACT UP and Treatment Action Group (TAG) saved our lives. We had to do it for ourselves, our status as Americans would not save us for the simple reason that we were gay. Thank god lesbians took on this battle with us, providing leadership and experience from the feminist movement, and we were also fortunate to have so many heterosexual allies. I think we were effective because we called upon people’s common humanity through efforts like the NAMES Project and the AIDS walks and service organizations, and because we took the in-your-face confrontations directly to those who had to be confronted: the FDA, congress, the White House, the Catholic Church, and Wall Street.

sarcastic remarks, but some of it is humor in a darker vein. Where does Kevin’s humor come from? Would it be fair to say that he uses his humor as both a shield against his pain and a sword to wound others out of his pain? I think his humor is a blue-collar sort of humor, where insults are a way of showing affection in some cases or shutting down an unwanted discussion in others. It’s also a way to avoid difficult topics, but it also can be a way to acknowledge them. I find Kevin’s humor a healthier way of coping, far better than self-medicating and isolating. When he does mock others, it’s not without cause. I think to his mind, he is making a genuine effort to be civil——at least he isn’t taking a swing at them. In my own experience with Stage IV cancer (I am in remission), I employed gallows humor quite a bit, shocking people from time to time. I could see the panic in their faces as they wondered what would be the right thing to do: laugh or pretend I hadn’t said anything. In my defense, it certainly took the edge off. I like gallows humor because it’s the humor of the afflicted. It’s not the cruel humor of those unafflicted. At the 1984 GOP convention, the president of American Airlines opened a breakfast speech by joking that "gay" was actually an acronym for “got AIDS yet?” American Airlines, Northwest Orient Airlines, I boycotted them and more, not that it really mattered, since I rarely flew.

Without giving away too much here, when Suzanne Huntington-Conti, Francesco’s sister-in-law, betrays the family and fabricates a self-serving “memoir,” the betrayal is shocking——and yet, familiar. So many of us dealt with family members who had no respect for the dead. And so Kevin’s hatred of her is a kind of hatred I recognize, and his rage-fueled confrontation of her is just delicious. Not many of us got the satisfaction of that kind of confrontation. Have you ever dealt with such horrors with the family of a friend lost to AIDS? Or known someone who has? Does any especially egregious example stick out for you? There are too many egregious examples from my time with the Minnesota AIDS Project, and I prefer not to talk about them, because it’s too damn depressing. While I drew on some of these events for the book, I also wanted to impart hope, because even more than outrage, that is what kept me going. I see a lot of highly regarded novels today that are simply catalogs of despair (or “trauma porn”), and while I knew I wanted to convey the trauma of AIDS, I also wanted readers to feel hope by the example of how our community responded. In addition to our community, what gave me hope were the family members who supported their loved ones unconditionally. They are represented in After Francesco by Francesco’s parents, Eddie’s parents, and by Kevin’s Aunt Nora. At the Minnesota AIDS Project I transitioned from volunteer coordination to fundraising, and my mentor was an older man who had lost his son to AIDS. He was a professional fundraiser who volunteered his skills on our behalf. I remember how he would have to be alone on the anniversary of his son’s death——he had too much grief and anger to be around people. I think about him often.

Finally, you’ve written that with After Francesco, you wanted “to honor the heroes and heroines of the '80s and '90s who fought a literal life-and-death battle against disease, hatred, violence, indifference, and ignorance. And it’s also a recognition that those of us who did survive often live with guilt and an empty space for those friends and lovers we will never see again.” Beyond the personal scars that the pandemic has left on all of us, what do you see as the most significant long-lasting effect the AIDS pandemic has had on our community? In terms of our community——the AIDS Generation——the long-lasting impact is social (so many people we assumed would be our life-long friends died young) and economic (jobs lost, careers interrupted in order to provide care). For long-term survivors, there is concern about the impact of medications on the normal aging process and cognitive functioning. Finally, I think many of us struggle with guilt that we are still here when so many of our friends and lovers are not. I wonder what works we might be reading today if Allen Barnett, Joseph Beam, Christopher Coe, Steven Corbin, Sam D’Allesandro, Melvin Dixon, Michael Grumley, Tim Dlugos, David B. Feinberg, John Fox, Robert Ferro, Essex Hemphill, Bo Huston, Stan Leventhal, Paul Monette, Darrell Yates Rist, Marlon Riggs, Vito Russo, Assotto Saint, Randy Shilts, George Whitmore, and many others had not died of this disease. The good news in all of this is how the AIDS Generation and our allies successfully educated ourselves, cared for our sick, and fought for our future. Systems were changed due to our work, particularly at bureaucracies like the FDA and NIH. The long-term results and ripple effects have been astonishing——a dramatic shift in public opinion, marriage equality, and, at last, federal civil rights protections. That said, I see concerning developments on campuses where I teach, so I have a warning for young activists today: don’t shame or pile on people who have good intentions but don’t follow your assigned script. Confront the institutions and individuals who need to be confronted, like the Alliance for Therapeutic Choice and Scientific Integrity, the American Family Association, Supreme Injustice Samuel Alito, and Supreme Injustice Clarence Thomas. Don’t lose your shit over some poor sap who makes an honest mistake. Be curious first, judgmental a distant second.

There’s a lot of humor in After Francesco, much of it in Kevin’s

Hank Trout interviewed Sister Roma for the May cover story.

AUGUST 2021 •

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"Being Seen" Podcast Seaon Two he Clio Award-winning Being Seen Podcast, with host and narrator Darnell L. Moore, has returned with all-new episodes for Season Two, advocating for a more diverse representation of Black queer and gay identities and experiences in fashion, entertainment, the arts, and beyond. Season Two guests include writer and producer Steven Canals (Pose), award-winning actor Colman Domingo (Fear the Walking Dead), acclaimed writer and producer Lena Waithe (Master of None), Pulitzer Prize-winning poet Jericho Brown (The Tradition), and world-famous performer, actor, comedian and RuPaul’s Drag Race alumna Shangela, among many others. The second season features ten episodes of new conversations, artistry, and explorations of what it means to be seen as one wishes to be seen. The episodes will focus on topics such as fatherhood, mentorship, youth, the barbershop, accessibility, sports,

Above: Fatherhood, by Gioncarlo Valentine. Left: Barbershop, Antonio Johnson

community, and Hollywood. Each episode of Being Seen is enhanced visually with licensed artwork and photography. The artwork has been curated by Danny Dunson, acclaimed art historian, art advisor, curator, and writer. The photography for each episode has been curated by Texas Isaiah and Gioncarlo Valentine from their personal archives and from photographers including Miranda Barnes, Laylah Amatullah Barrayn, and Widline Cadet. Darnell L. Moore is an award-winning writer, activist, organizer, and author of No Ashes in the Fire: Coming of Age Black and Free in America. He is Director of Inclusion Strategy for Content and Marketing at Netflix, editor-at-large at CASSIUS and co-managing editor at The Feminist Wire. He has received the Humanitarian Award from the American Conference on Diversity for his LGBTQ advocacy and has been named among Ebony Magazine’s Power 100, Time Out New York’s Eight LGBT Influencers, The

Root 100, and Planned Parenthood’s Top 99 Dream Keepers. Being Seen was created and produced by Moore and Harley & Co., an award-winning New York based creative studio that specializes in experiences, identity design, and narrative content, in cooperation with ViiV Healthcare, the only pharmaceutical company focused solely on combating, preventing, and ultimately curing HIV and AIDS. For more information about ViiV healthcare, visit https:// viivhealthdcare/en-us. The Being Seen podcast is available on both Apple and Spotify. —Hank Trout

• AUGUST 2021

BO OKS BOOKS

Hank Trout writes the For the Long Run column for A&U.

Plague Years

A Doctor's Journey Through the AIDS Crisis by Ross A. Slotten, MD University of Chicago Press

n 1992, a commissioner on the Chicago Board of Health “informed me that no one had signed more death certificates in Chicago than I had,” Ross A. Slotten, MD, writes in his new memoir, Plague Years: A Doctor’s Journey through the AIDS Crisis.

That grim statistic sank into some dark hole of my consciousness during the day, surfacing at the most vulnerable moments, in the middle of the night, when sleeplessness unknitted the tightly woven sleeve of care. Trained as a family physician, a “birth-to-death” caregiver, Slotten finished his residency in 1984, just three years after the first reports of what became known as AIDS. Although he was not an infectious disease specialist, his unique position as a gay man treating primarily other gay men in a large urban setting led Slotten to become one of the early pioneers of HIV/AIDS treatment, beloved by patients, revered by other experts. Since the events in his memoir occur before the advent of HAART in 1996, nearly all of Slotten’s HIV/ AIDS patients died the kind of horrible death many of us have witnessed, leading Slotten to refer to himself as “a grim reaper gripping a stethoscope instead of a scythe.” Plague Years is unique among the other doctors’ memoirs of the AIDS crisis that I’ve read in that Slotten freely discusses the psychological and emotional effects on himself of his practice. At one point in 1991, during the peak of AIDS deaths in the U.S., Slotten examines his perceived callousness when a young doctor telephones him early in the morning to tell him that another of his patients has died. “Although I feigned surprise,” he writes, “I couldn’t feign sorrow. Another death from AIDS——by now so commonplace for me that a week without a death was an anomaly.” He frets about the effect of his career on his personal relationships, especially after one partner abruptly leaves him after twenty-four years together. And although he greatly admires the activists of ACT UP and other groups, he laments that he cannot join in. “I couldn’t be a doctor caring for hundreds of HIV-infected patients and an activist protesting in the streets or lobbying politicians….I had to choose my battles. Treating patients was my greatest strength.” The concluding chapters of Slotten’s memoir occur after the 1996 advent of the HAART “cocktail” (the AZT-Norvir-Crixivan combination so many of us began taking). As his patients begin living with HIV instead of dying with AIDS, Slotten describes with affection and compassion the “Lazarus effect” on patients who earlier were close to death. He describes his sense of relief as his practice comes to resemble a typical family physician’s practice and not primarily an AIDS practice. He writes, “If I never see another patient with full-blown AIDS again… I’ll have absolutely no regrets.” Plague Years is a thoroughly enjoyable, plainspoken, well written, unique glimpse into the life of a prominent in-the-field physician who has cared for HIV/AIDS patients since the very beginning of the pandemic. Slotten writes honestly, lovingly, movingly, about some of his patients and his relationship with them, from the unique perspective of a young gay doctor treating young but dying gay men. His memoir is a valuable and most welcome contribution to HIV/AIDS history. —H.T. AUGUST 2021 •

"Plague Years is unique among the other doctors’ memoirs of the AIDS crisis that I’ve read in that Slotten

freely discusses the psychological and emotional effects on himself of his practice."

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lifelines

uring 2020, Swim for Life was beached, but nevertheless swimmers, bikers and paddlers participated and raised pledges across twenty-six states, from California to Iowa to Florida. Set for September 11, 2021, the 34th annual Swim for Life and Paddler Flotilla will raise funds for AIDS Support Group of Cape Cod, Helping Our Women, and Outer Cape Health Services, among other organizations. The much-loved event has raised over $5 million since 1988. Welcoming back swimmers, volunteers, kayakers, boaters and the public, Swim cofounder, artist and Provincetown Community Compact founder and director Jay Critchley said, “The Swim and the community made waves in response to HIV/AIDS and now we have a renewed mission to strengthen our resilience as we act to create a more diverse and equitable future. Let’s come together once again in a joyous celebration in the town that we all love and support.” This year’s Swim for Life has a new swim route, a new time and a new post-Swim Mermaid Tea, with the possibility of a freshwater swim (stay tuned about that). In addition, those participants not on the Cape are able to join in virtually. Artist Jim Youngerman, longtime Swim for Life swimmer from Lenox, Massachusetts, created the 2021 Swim for Life design. For registration details and donations, visit swim4life.org.

AUGUST 2021 •

YEARS OF LIVING PRECARIOUSLY by Bruce Ward

A NEW NORMAL

Part IX of an Ongoing Chronicle of the First Fifteen Years of the AIDS Pandemic

ne Sunday, about fifteen years ago, I was visiting my then eighty-five-yearold father in Massachusetts. We were sitting at his kitchen table, and each of us was silently filling our 7-day pill organizers, top for A.M., bottom for P.M. That’s when I realized that, at age forty-six, I had been sorting pills much longer than my eighty-fiveyear-old father. In fact, the process of sorting pills had become completely normalized. Over the years, I have continually had to adjust to a “new normal.” I was diagnosed with what then was called HTLV-111, in 1986. This was ten years before the pharmaceutical treatment we all know now as the protease inhibitor “cocktail” changed the course of the epidemic, in 1996. My T-cell count, at the time the marker for viral progression, was 217. A normal T-cell count is 500–1500. I was living in New York City, and had already been working as an AIDS educator when I received my diagnosis in ’86. And it was my nature to take the bull by the horns and take immediate action. Of course, there was little to be done at that time. I found a prominent doctor in the West Village who had a primarily gay practice, and was now steeped in all things AIDS. There were a few experimental treatments that worked in separating the virus from healthy T cells, but only under the microscope. One such treatment was only obtainable through an underground AIDS guerrilla group, the PWA (People with AIDS) Coalition. It was called

egg lipids. So, in 1986, I took the subway to their makeshift office downtown and purchased a huge jar of this viscous, peanut-butter-like concoction, paid them a lot of money, and brought it to my tiny fifth-floor walkup studio apartment in what was then the seedy area known as Hell’s Kitchen. What you would do is scoop the substance into individual ice cubes, freeze the tray, and, in the morning, pop out one of the cubes, let it melt, and then spread it on a piece of toast, and eat it. Although the egg lipids did nothing to increase my T cells, I continued to do my daily routine, and, in fact, went to purchase a second jar at the PWA Coalition. And left it on the subway. I probably cried on the street when I realized it. And never purchased it again. Around the same time that I was diagnosed in ’86 and taking the egg lipids, the first pharmaceutical drug was released into the market: AZT. I was working as an educator for the New York City Health Department AIDS hotline, and TIME Magazine came into our offices to photograph the operators for the breaking story. And so my photo appeared, twice——phone receiver to ear, a head full of curly brown hair——on the inside cover of TIME, and again, larger, accompanying the story, under the headline: “A Ray of Hope in the Fight Against AIDS.” I was the unwitting face of hope. Two years later, in 1988, I began taking AZT, myself. It signified a new marker for me. Now it was serious. I held that tiny blue and white pill, imprinted with a unicorn——the symbol of Burroughs-Wellcome pharmaceuticals——in my hand. I took a breath and swallowed it. Little did I know that I would still

viewfinder be swallowing antivirals, every day, for the next thirty-six years. And counting. But then that became the new normal. Until I became anemic. And then a constant plateauing of “new normals” would occur, every year and a half, when I was switched from one antiviral to another. For the next eight years, I managed to stay just one step ahead of the virus, from AZT to less toxic drugs: ddI, ddC, 3TC, Fuzeon, and then in combinations, that all may have slowed the progression of the virus, but did not stop its inevitable and relentless gobbling up T cells like the PACMAN video game. And then, in 1996, seemingly out of nowhere, came the protease inhibitor cocktail. For the past twenty years, I have been on the same treatment regimen. I’m not one of those who can just take one pill a day. I’m on what’s called “salvage therapy.“ And the double A.M./P.M. pill organizer became the next adjustment, the new “new normal.” I still take three antiviral meds, twice a day, for a total of ten pills a day. That’s in addition to the meds for all of the other ailments that I’ve experienced as a consequence of living with the virus for so long, like checking off items on a grocery list: two lymphomas and chemos, a heart attack, six stents, both hips replaced, high blood pressure, neuropathy, diabetes, depression, and chronic fatigue. And pills and injections for all of them. I have estimated that I’ve ingested approximately 100,000 antiviral pills, since that first AZT tablet, thirty-three years ago. I am basically held together by duct tape and Elmer’s glue. And the miracles of modern medicine. Some research has stated that the typical longterm survivor is 13.3 years older than our biological age. So I’d like to think that I’m not doing too badly for a 76.6 year old man. (I am, in actuality, 63.) I’m always adjusting to a new “new normal.” It’s the only way to stay afloat. So, I continue to sort my pills, every Sunday—— just as I did with my dad, at that kitchen table, fifteen years ago. Because we all——all of us——learn to adjust to new normals, throughout our lives. And I want to stick around long enough to see what the next one will look like. Bruce Ward is A&U’s Drama Editor, and he has been writing about the AIDS epidemic since its inception. His plays, Lazarus Syndrome and Decade: Life in the ’80s, have been produced throughout the U.S. Bruce was the original Director of the CDC National AIDS Hotline, and he was honored by POZ magazine as one of 2015’s POZ 100. You may follow him at: bdwardbos.wordpress.com. • AUGUST 2021

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.

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HIV alone didn’t cause the clogged artery in my neck. Smoking with HIV did. Brian, age 45, California

HOW DOES HIV TREATMENT WORK AS HIV PREVENTION Starting and sticking with HIV treatment every day helps lower the amount of HIV in your body. It can get so low it can’t be measured by a test. That’s undetectable. Less HIV in your body means it causes less damage. And according to current research, getting to and staying undetectable prevents the spread of HIV through sex. It’s called Treatment as Prevention. Or TasP for short. 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