WORLD AIDS DAY, 2021

Here we are again, another World AIDS Day. I could wish there were never a reason for such a day, but that’s nothing but a wasted wish. AIDS happened. It’s still happening. I’m grateful there’s a day that’s been so well established for us to pause and to reflect, not just on our loved ones who died, who became HIV+ or who have been otherwise impacted, but to think with a broader perspective of all that the world has lost and all that still needs to be done.

 

All photos are from posts
for The AIDS Memorial.

I continue to look at the daily postings on the Instagram account for The AIDS Memorial to read remembrances of people who died of AIDS-related causes. I invite you to go there today, to gaze at the faces, to read a few tributes. If you’re too young to remember the most devastating period in the eighties and nineties, five minutes of going through some of the posts will make the loss more real to you. It will stop you from dismissing AIDS as something that happened Before You, like World War I or the fourteenth-century bubonic plague. You will understand, if only just a little, the devastation of AIDS. If you lived through that time, the posts will bring back some of the pain, fear and helplessness, but it’s imperative to remember, to honor and to wonder about all that the world lost in terms of the relationships and contributions of these individuals.

 

Every day, I smile at the photos. Dear souls, some with goofy smiles, some with really big hair, many enjoying a moment at a club or playing with a young niece or just sitting on a living room sofa. We didn’t have cell phones with dozens (hundreds?) of selfies and social media sites for posting every group dinner, each time going to the beach or even every Christmas or Halloween. (Someone may have taken photos on a Nikon or Polaroid camera, but they weren’t so easily shared, if at all.) Often, a post about an uncle, partner, father, aunt, mother, best friend or grandparent includes the comment, “This is my only photo.” It feels more precious and more important that these images are seen.

 

I’ve gotten so accustomed to viewing these posts that I catch my mind twisting and contorting the most basic facts as if to conjure a cup half full from an empty glass. Typically, a birthdate and a date of death are included. I do the quick math and catch myself thinking, “At least he made it to thirty-six.” Pardon my language, but it fits here: How fucked up is that? It comes, I suppose, from having read so many posts about people who never made it to thirty. Imagine being twenty-two, testing positive and knowing that death may come in a matter of months (if it’s the early eighties) or a few years (if it’s the nineties). Hope was there. The fight was there. Time wasn’t. There was no time to question the efficacy of experimental drugs, many of which ravaged the body. People invested in maybe. It was all that was offered. 

 

I’ve met men in recent years who have been HIV+ since the mid-eighties and are healthy, undetectable individuals living full lives. But most people died. Overwhelmingly stacked odds. Imagine making it twenty-four and setting your twenty-fifth birthday as a goalpost. (My buddy Stephen’s target was twenty-nine. He reached it and lived an extra month.) I’m fifty-seven and finding some warped relief or solace in someone living to thirty-six or forty-two or fifty-one is seriously fucked up. 

 

Families lost so much. So many partners lost their lovers, now often referred to as husbands even though marriage wasn’t an option back then. So many friendships were cut short. So many creative contributions will never be seen, so many mentors who never got to share life’s learnings. WE lost so much. 

 

AIDS is by no means over. For many, it can be effectively managed, but care is not uniformly accessible and there are complications regarding regularly taking medication and other health factors. According to the Joint United Nations Programme on HIV and AIDS (UNAIDS), 680,000 people died from AIDS-related illnesses in 2020. (The AIDS epidemic has taken 36.3 million lives since what we consider to be the beginning.)

 

36.3 million individuals.

 

21% of women and 32% of men living with HIV still do not have access to antiretroviral therapy. In 2020, 1.5 million new HIV infections were diagnosed. There is still no cure. There is still no vaccine. There is still more to be done.

 

It’s essential that we continue to support those impacted by HIV and AIDS. It’s critical that we remember the history of AIDS—the discrimination, the neglect, the conscious inaction, the continuing stigma, the magnitude of the loss. By honoring and reflecting on loved ones and people we never knew who died of AIDS, may we keep the cause in our consciousness, may we continue to advocate for and financially fund supports for people living with HIV and AIDS and may we bring back a sense of urgency to finding the cure.

 

  

THE MEMORY LIVES ON (Book Review of The Great Believers)

An important book. That’s how I’d initially regarded Rebecca Makkai’s The Great Believers (Viking, 2018). I knew from skimming a review that it was a novel about AIDS, after all. But that hadn’t been enough. If it had come out in 1990, I’d have devoured it, just as I’d worked my way through Randy Shilts’ And the Band Played On, sobbing at many spots, getting riled up at many more. But the urgency has long faded, at least here in North America. Maybe that’s why I only made it through the first twenty pages when I checked this book out from the library last year. I stumbled across the title again when I was in Stockholm this fall and jotted down the name, having forgotten that I’d abandoned the book once already. Thank god for memory lapses. This time around, the important book quickly evolved into a compelling, entertaining read.

The story begins in Chicago in 1985 at a makeshift memorial for Nico who has just died from complications from AIDS, his gay lover and friends excluded from the official family funeral held twenty miles away. Nico’s feisty twenty-one-year-old sister, Fiona, has boycotted the funeral, opting to be with loved ones who never shunned him. Chapters alternate between 1985 Chicago (and the years thereafter), told from the perspective of Nico’s dear friend Yale, and 2015 Paris where Fiona is trying to locate her adult daughter, with whom there has been no communication for three years. Parts of the story go back to pre- and post- World War I as well, since 1980s Yale, in his new position working for a fledgling art gallery at Northwestern University, has to make trips to Madison, Wisconsin to meet up with Fiona’s great-aunt, Nora, who may or may not have a significant art collection to bequeath from her time in the thick of the Parisian art scene, connecting with greats like Amedeo Modigliani and Tsuguharu Foujita.

The story is about profound loss and how to keep alive the memory of loved ones who died in what should have been the prime of life. Just as aging Nora is still driven by a passionate love affair from more than sixty years ago, Fiona finds her life forever impacted by her deceased brother and his gay community of friends. Indeed, in an excerpt from a 2015 chapter: “They weren’t all dead. Not all of them. On October 13 she’d held her own quiet memorial, alone in her house, for Nico. Candles and music and too much wine. Thirty years. How could it possibly have been thirty years? But that was just the start of the worst time, when the entire city she’d known was turning into lesions and echoing coughs and ropy fossils of limbs.”

Often, in reading this book, I ached right alongside Fiona. The book is so well-researched, the events of the AIDS crisis so realistically told, that my own friends and acquaintances—Stephen and Don and Farrell and Jose—came vividly back to life as well, frozen in time at twenty-eight and thirty-two. Knowing how prognoses began to change beginning around 1995, The Great Believers brings back heartache and a rueful, devastating series of If Onlys. Quoting from the same page: “She had so much guilt about so many of them—the ones she wished she’d talked into getting tested sooner, the ones she might have gone back in time to keep from going out on a particular night…, the ones she might have done more for when they got sick.”

The plots about the possibly valuable art donation and Fiona’s missing daughter are told well enough, but the heart of the novel involves how the AIDS crisis impacted one particular social circle in 1980s Chicago. The accounts of decisions to get tested (or not), of fretting over the results in what was then a tortuously long two-week wait period, of hospital visits, of rapid declines witnessed on the street or in bars, of debates about bathhouses and of rising civil disobedience vividly convey the time. For me personally, I was still closeted back then, my awareness of AIDS developments coming solely from news sources (and, yes, Shilts’ magnificent tome). The Great Believers masterfully adds flesh to the facts that I knew. This work of fiction makes things real.

Given the subject matter, there were scenes that I struggled to get through and I had to put the book aside one night, angry with a plot decision Makkai made. It was silly. She was keeping things brutally real; I was fighting for some trace of fairy tale. Happily ever afters had no place in that time. Didn’t we think it was only a matter of time before AIDS got us all?

For more than a generation now, there have been happier fates, endings postponed indefinitely. That means that a large portion of the LGBTQ community has no personal knowledge of such a darker time, one which also gave rise to more political activism leading to so many of the changes we see happening today. AIDS was our war. The Great Believers is a powerful book to help us remember, to help others understand. An important book, yes, but also one that is so very well told.

REMEMBERING

My first thought on World AIDS Day was, Let this not be about Charlie Sheen. The media likes to make things topical and timely. But pop culture needn’t drive such a significant day, a time to reflect on lives lost far too soon. Needlessly. Painfully. All too swiftly.

There was a time when the pop factor mattered. Rock Hudson. Freddie Mercury. Magic Johnson. They helped “normalize” HIV and AIDS by shining a paparazzi-driven spotlight on the crisis. Pedro Zamora educated young people about AIDS, talking openly about his diagnosis on “The Real World” during what I believe was the reality series’ finest season. And for a while, Entertainment Weekly ran “The Faces of AIDS” on an annual basis, showing how the death toll impacted the industry. It was a somber, compelling statement, part tribute, part tragic reminder of the personal and creative toll.

Movies like “Philadelphia” and plays like “Angels in America” provided memorable characters to show the public the struggles that came with AIDS and to provide those of us closer to the crisis another means of grieving. Still, two works continue to impact me to this day as I reflect on the fears and frustration I felt throughout the AIDS crisis: (1) Randy Shilts’ And the Band Played On which awakened me to the magnitude of the problem and the infuriating politicking that interfered with sound public policy and research efforts, and (2) “Common Threads: Stories from the Quilt”, the Oscar-winning documentary on The NAMES Project AIDS Memorial Quilt which achingly told the stories of loved ones lost.

Today, as I stop to think about Stephen and Farrell and Don and Jose and Steve and Greg and others whom I knew who died from AIDS, I wish there were a public initiative for yet another grand-scale unveiling of the AIDS Quilt. Parts of the quilt tour the U.S. during the year and I am not sure that the 48,000 panels can be displayed in one setting. Let it be shown in large sections in public parks and stadiums on this day. The individual panels were meant to be displayed as a collective. While we marvel at medical advances today, people need to be reminded of the scope of the devastation from AIDS and its continuing destruction in parts of the world.

Today is a day to love, to honor and to remember.

LIVES LOST

I fear we’re forgetting.

In the 1980s and 90s, AIDS ravaged gay communities, created doorknob hysteria and gave the public a medical excuse to shun homosexuality. It was the time period in which I came out—a time of fear and hatred. More significantly, it was a time when thousands of gay men died far too early, when a cliché like “only the good die young” became maddening. Nothing could soothe or help make sense of the tremendous loss.

I want the men—and women and children—who died from AIDS-related conditions to be remembered, their stores to endure. That is why the AIDS Quilt meant so much—loved ones reflected on the highlights of a life lived and honored that individual with a tapestry sewn together while working through their own grief. I remember sitting alone in an L.A. movie theater, watching the Oscar-winning documentary “Common Threads: Stories from the Quilt” and being so distraught I couldn’t leave after it ended. Beautiful people gone. The haunting Bobby McFerrin soundtrack plays in my head as I recall the pervasive sadness (and the lighter moments) that make the film so vivid to me even now.

But the film’s threads were only snippets of a few of the people who died. So many small and big moments could not be shared in an 81-minute film. Years after a person dies, a loved one will continue to lament about moments that cannot be experienced together and he or she will feel intense guilt when realizing a whole day may have passed without thinking about the deceased person. Recalling the face, the mannerisms, the moments becomes harder. Photos provide an infusion.

And yet, just as veterans speak of concerns about the public forgetting the fallen in time of war, the same goes for those of us who lived, loved and lost during the peek of the AIDS crisis. Much good arose from dark times. Anger led to activism and, while some fortified their closets, many stepped out, embraced the (at the time) more in-your-face term “queer” and demanded acceptance and understanding, the stepping stones to today’s unrelenting push for equality.

Still, on the eve of World AIDS Day, I urge younger gays to Google something other than porn, to tweet something not about Miley and to learn more about a generation that watched vibrant individuals waste away in short, yet agonizing months. Find a copy of And the Band Played on by Randy Shilts or David Levithan’s new two boys kissing, read blog posts about World AIDS Day, watch “Common Threads”. Talk to those of us who are older. Ask us to share memories of sweet souls who died despite all the hope and courage they could muster.

By all means, celebrate your life. But, please, take some time to celebrate past lives of people who should still be with us. They still are, of course, if we can talk, share and remember.

WORLD AIDS DAY: BYGONE BUDDIES

Twenty years ago, Stephen dreamed of becoming a successful actor. Like so many such dreamers, he moved to Los Angeles to see if he could make a go of it. He befriended others who were interested in the arts, joined several choirs, tried out for musical productions and even appeared as cast member in a television pilot for NBC. Unfortunately, the network passed on developing the pilot into a series. To pay the bills, he took jobs in catering and eventually started his own catering company.

Stephen lit up every time we talked about television or movies. He was appalled over how few of the oldies I’d seen. When I confessed that black and white footage lulled me to sleep, he was aghast. Still, he felt it was his role to educate me. He made me watch Stephen Sondheim’s INTO THE WOODS and helped me realize that Bernadette Peters actually had talent beyond being a lackluster occasional guest on “The Carol Burnett Show”.

We had tea together and enjoyed kosher chocolate macaroons (after I mistakenly picked up a dozen that weren’t kosher). Stephen regularly prodded me for information about my first love. He let me know I deserved to be in love. He listened as I unloaded my insecurities.

Stephen would be 49 years old now.

Nineteen years ago, I met Don. Don lived in a tiny bungalow in Venice with his life partner who had gone blind. Don liked having me over as a distraction from all the needs of his partner. We’d go out to Santa Monica restaurants. Knowing I was a vegetarian, he introduced me to a wonderful Buddhist Chinese restaurant where I later took my parents—I confess to delighting in seeing how awkward my father was in pretending to like eating mock duck but that could be the start of a completely different blog post. Don raised orchids. He talked of them like they were his children. I decided it best not to share that I preferred tulips.

On one evening, I picked up Don to go to our favorite Italian restaurant. I took a shortcut through a neighborhood and we came upon a crowd marching in the street. “Good for them,” I thought. Everyone in the crowd was black and they voiced their anger over the not guilty verdicts announced that day in the Rodney King beating trial. As we idled at a stop sign, a bullet pierced and shattered the backseat window. Had Don not been with me, I might have frozen in panic. I had to protect him. By then, he walked with a cane. If I didn’t get us out of there, if we were swarmed, how would he cope? Only when we pulled up beside the restaurant did my hands begin to shake uncontrollably. Only after I dropped Don off after dinner did I burst into tears to let out the pressure that had built up from the danger I had put us in.

Don probed me to find out how my first love crashed and burned. He offered encouragement, chipping away at the walls I was putting up. Even though I didn’t believe him when he said I was a catch, his words provided a healthy counterbalance as I frequently replayed in my mind all the mistakes I’d made in love. If I wallowed too long, Don would refocus me. “So…it seems soup now gives me diarrhea, too.” He’d put things in perspective.

Don would be 71 today.

Stephen died in 1992, Don the following year. They were my Buddies, PWAs (persons with AIDS) who requested a little extra emotional support from AIDS Project Los Angeles. Stephen the dreamer and Don the pragmatist were both very different from me. Still, we bonded. They empowered me, they helped me feel like I was doing something besides living in fear at a time when AIDS remained a death sentence, when I could walk the streets of West Hollywood and see the gaunt faces of the ones who had only months, perhaps weeks left to live. Most of my friends got quiet as we passed them. Conversation abruptly paused. They looked away. By getting to know Stephen and Don, I learned not to look away. I offered a warm smile and mentally passed on encouraging, albeit naive thoughts. Hang on. Take care of yourself. You are loved.
Being with Stephen and Don, I saw how one family gathered around while another refused to have any connection with their son. I watched as Stephen’s roommate coped with one-liners, while a Don’s lover lost all ability to care for himself much less Don. Don’s partner moved into a hospice in the worst part of Los Angeles, a place that reeked of urine and appeared more depressing than any hospital. Stephen talked as though AIDS was a temporary setback, a nagging condition a little more persistent than the flu. Don recited the names of all his friends who’d already died. He talked about his funeral and relatives who were not welcome.

As both Stephen and Don’s bodies shut down, their inner strength remained strong. While it is true that I only met each of them months after the initial diagnosis, neither one asked “Why me?” They lived in the moment, dealing with the present physical challenges while yearning for an outsider like me to share bits of normalcy.

I learned that a quiet moment holding someone’s hand while hooked up to a morphine drip lingers longer and comforts more than the cheery story I thought of on the drive over. Because of them, I became more compassionate. When my grandmother was ill, I removed myself from the family dinner and sat at her bedside, allowing her to whisper a few thoughts, letting her see my familiar smile. My grandmother, a lifelong worrier, relaxed. Her breathing became easier, her mood brightened a tad. “Where did you learn that?” my bewildered mother asked.

I think of Stephen and Don often, particularly Stephen. I think about the contributions to the lives of others that they made and the greater contributions they could have made. I honor Stephen on every bike ride, letting the water from in the Strait of Georgia lap over my front tire at the far end of my journey, much like we dipped the wheels of his wheelchair in the Pacific during a trip to Santa Barbara during the final month of his life. That little ritual keeps me connected.

I remember Stephen and Don. I miss them. I think of all the others who died from AIDS, gone too soon, missed by too many.

THOUGHTS ON WORLD AIDS DAY

I’ve been thinking a lot about AIDS lately. I am writing a novel set in 1990-1991, a time when I was fully committed to the cause. AIDS Walk, A Loving Spoonful, AIDS Project Los Angeles, I helped wherever I could. Now it only seems like something I read about in the paper, the headlines appearing less often and buried on the back pages.

Maybe it’s because I’m so far removed from the gay community, but I think we’ve become complacent. Well, I have. It is true that I no longer see men with recognizable signs of AIDS when I walk through Vancouver’s West End, but I’m guessing that’s because drug treatments have become more effective in allowing people to live with AIDS. It’s still there,…just not in your face.

I don’t know current stats. Perhaps things are much rosier for gays now. If so, great, but today is a day to remind us that there is a generation of gay men greatly reduced in numbers due to what came before. I think of Stephen and Don, two men I supported as a buddy in L.A., both magnificent men in unique ways. Don would be 64 this year if he hadn’t died of AIDS-related complications at 47. Stephen would be 47 had he not died at 28.

No doubt, great progress has been made since AIDS was a curious affliction known as GRID (Gay-Related Immune Deficiency) in the early ’80s. I read in the Vancouver Sun today that there is a walk-in clinic where you can get an HIV test through a finger prick and know the results in a minute. A far cry from when I went with my lover to have a test and I ended up lying on the floor, the poor nurses watching to see if I would pass out after the dreaded needle. The information and much better medical resources are out there. Still, there is much work to be done to ensure that the best education and treatment are offered throughout the world.

Today is a day to reflect on the past, hope for the future and give myself a kick in the ass to do something.