This post is lengthy, but few of the words are mine. (My intro turned out to be longer than I anticipated, but I wanted to provide context.) I have written many times about AIDS, remembering when it was at a crisis level and continuing to support efforts toward helping persons with HIV and finding a vaccine and a cure for AIDS. I truly believe in a NEVER FORGET approach to recalling the human toll and the brilliant, compassionate individuals who died too soon…the average Joes as well.
There are many people today who were born after the AIDS peak or were too young to know what was going on, blissful days of Power Rangers, “Moesha” and that dang Tickle Me Elmo. Many younger members of the LGBTQ community don’t have a full sense—perhaps even any sense—of the loss and how it spurred increased visibility, formalizing and broadening advocacy while rallying straight allies who had friends and relatives that were affected. These efforts are directly linked to an evolving activism leading to the greater freedoms we now enjoy (but must not take for granted).
A couple of months ago, I stumbled on an AIDS Memorial post somewhere online and I discovered that the original source was an Instagram account. I immediately followed the account (theaidsmemorial) and from then on, I’ve read daily tributes to people who have died from AIDS-related illnesses. On any given day, there are three or four posts—thus, I’ve read about two hundred posts so far. There are days when I brace before logging in, when I hope it will be three posts instead of four or, just maybe only two. I get teary when I read the tributes, always so heartfelt, often wrenching. Sometimes the tears flow. I smile every time as well, sometimes even laugh. Sometimes everything hits me at once. That saying, “A picture is worth a thousand words” has never rung so true and when I look closely at the photos or, sometimes, photos, of the person. Most often, I see a sweetness in the individual. I also marvel at the big hair and now-dated fashion so many of us wore back in the day. It brings fond memories. There are some who unabashedly wear outlandish outfits and I think about what a larger-than-life character the person must have been. It may sound weird, but after I read each post, I make a point of winking at the person’s photo and saying his or her name. You are remembered. I honor you. It matters deeply to me.
The tributes are for lovers, friends, mothers, fathers, uncles, aunts, sons, daughters, grandparents, cousins, coworkers, teachers and mentors. Many of the tributes are for gay men, but there are others for hemophiliacs, people who struggled with addictions, and people who acquired AIDS from reasons not specified. The people who are honored are from all over the world (though most often from the U.S.). Some posts are glowing, others make no attempt to deify their loved ones, but choose to portray them for the loved, but flawed humans we all are.
I am taken aback by how young almost all of the people were. So few made it to my current age (fifty-six). There are many who died in the ’80s and early ’90s, particularly scary times when the hate was the greatest, when many families disowned them, when treatments seemed as debilitating as the disease and when causes of death were cancer and pneumonia. I am heartbroken when I read about those who died between 1994 and 1996 when we were on the cusp of treating patients with more successful, life-extending drugs. If only they could have held on a little bit longer. If only the disease hadn’t been so savage. I am also surprised by how many died in the twenty-first century, including 2020.
Yes, we must continue to make AIDS a health priority.
I encourage you to follow the Instagram account. Skip the posts some days if it becomes too much. Maybe just look at the pictures and the name. Check in only occasionally if that makes the most sense for you. There is no prize for who reads the most posts. The point is to understand and humanize the toll that AIDS has taken and to simply remember.
What follows are snippets from posts I’ve read, each triggering various emotions and thoughts while also reminding me of things I lived and witnessed. I have pared down comments but none of the writing is edited.
REMEMBER ME:
Patrick Lamar Taylor (October 8, 1963-December 24, 1994): Around 1982, I first saw a story about gay men dying from a mysterious illness in New York and San Francisco. I don’t think I thought much about it at the time. I never imagined that my best friend from the age of 10 would die from a disease later named AIDS on Christmas Eve, 12 years later…[As kids] Patrick and I became inseparable. We loved all the same things as boys…As we grew older, it became apparent we also shared a love for men…Unfortunately, Patrick’s family was not as accepting as mine. When he was 16, he was shipped off to a mental hospital in Georgia. There he was subjected to conversion therapy and shock treatment…I will forever miss my beautiful friend. I wish I could have been there for him. I wish he could have held on until much better treatments were available. I will always wonder where life would have taken him and where he would be today.
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Tommy Pace [no dates provided]: I think of my dear, wickedly funny, brilliant Tommy Pace. Tommy’s malady was the cruelest. It started slowly, with the smallest Kaposi’s sarcoma lesions I first spied in 1984 as he peeled off his gloves after a performance of “Naked Brunch.” It rapidly progressed.
[Another friend] recalled a time Tommy was taken to a dog show…As a Dalmation pranced in front of him, he whispered with unbearable black humor, “I have spots too.”
He radiated inner turbulence. Conversations became fleeting; he would abruptly terminate the exchange and retreat. The lesions on his arm were soon matched by a single raised purple lesion on his nose. Tommy covered it up with makeup. Until there was a crop of them. The lesions, now swollen to almost double their size, soon covered his whole face, obscuring his once-glistening eyes. Tommy became unrecognizable.
Through the course of the epidemic, I had come to realize the process of death would either bring people to a higher or lower place—bringing out the more elevated spirits or the darkest demons…Tommy, once the sweetest, gentlest soul, became monstrous. We all tried to turn the other cheek and form a support circle around our dear friend…A trip to the movies attracted unwanted attention. No matter how big the hats and oversized Jackie O sunglasses were, or how many scarves he wrapped around his neck, people would point and whisper…And he knew it. When he caught people staring, he would howl in the most guttural, brutish voice, “Don’t look at me, DON’T LOOOOOK AT MEEEEEEEEEE.” It was heartbreaking.
*
Thomas E. Shields (May 9, 1952-April 3, 1987): Mr. Shields singled me out and treated me like I was his child. And I completely adored him…A favorite memory was when we would make some sort of mistake in class and he’d say out lout (almost singing) “I can’t go for that” and the entire class would respond “No can do!”…I’ve told my children stories about Mr. Shields over and over. I’ve shared with them and now with you…this exceedingly talented, intelligent, kind, generous and gentle man I was sincerely blessed to have known…even for a short while.
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This is my beautiful mom, Catherine Herpfer (April 22, 1959-August 15, 2017)…The effortless hostess…No cancer, no pneumonia, her body just grew tired and stopped working after years of undiagnosed, untreated HIV…My mother was a substance abuse counselor. She was active, ate clean, surfed and paddle boarded any chance she could get near the water…Mom was diagnosed with AIDS on April 30, 2017. She had been unable to walk since Thanksgiving, a complication of the undiagnosed virus that had been in her system. She had been to every kind of doctor to find the cause of her paralysis and when she was finally tested for HIV, the test results never came back to the doctor and he didn’t follow up…I watched my mom waste away from a vibrant, energetic, force of nature to a weak, frail, shadow of herself. I’m still sorting through the broken pieces of my heart…All I know is that I will live the rest of my life honoring the things she held dear, the best qualities she possessed and advocate as best I can. I love you mommy.
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AIDS does not discriminate against anyone. It took a whole generation of men in the hemophilia community. My brother Eric Ryan (Rick) (May 10, 1963-December 18, 1993) was my best friend. My brother William Ryan (Bill) (May 12, 1969-May 26, 1992) had just made his 23rd birthday. Both were great men as were ALL their wonderful friends that went with them.
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My sister Dorothy (aka Nicole) and her husband Jason both died from AIDS, Jason in 1987 and Dorothy in 1989. They’re very missed.
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Jaime Jesus Jimenez (May 18, 1963-October 27, 1995): That’s us [in the posted photo] in 1990…madly in love. Jaime was the only man I ever fell in love with. He was insanely beautiful, inside and out. The stories are endless but one that I cannot erase is bathing Jaime at his weakest and in the last stages of his illness. That very moment, looking at each other, knowing this was it. I felt something shift in my chest. It was my heart literally aching. Fuck I miss him.
*
Marty Donnelly: I accompanied Marty’s casket on the flight from Chicago to Sioux Falls and in the hearse to Cavour…When arriving at a small, local hotel where his family had gathered, an uncle, sort of the family patriarch said, “I understand Marty died from cancer, ah?” I froze. Even in death, so many of our loved ones had to hide their truths.
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My brother Rion Planty (May 10, 1974-March 2, 2005) lost his battle with progressive multifocal leukoencephalopathy (PML). He contracted the virus due to his almost non existent immune system.
Rion tested positive with HIV sometime in 2002 but he was so afraid of the stigmatism that he stayed quiet and didn’t tell anyone. He lived in [such] fear of anyone finding out that he did nothing to take care of his health…
So many “if” scenarios have gone through my mind every day for the past 16 years but I know in my heart that if Rion had taken care of his health from the moment he tested HIV positive, he would still be with us today. I truly believe it was the stigma of the disease that took his life, not HIV.
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An example of the unique personalities lost:
Alan Walker (July 6, 1951-May 13, 1996): In between acting gigs and working in bookstores, he collected stamps and created elaborate paper doll folios. Often these paper cut-outs centered around the Miss Universe beauty contest, sometimes in evening wear, sometimes in swimsuits. Each character had a complete bio. He could describe in detail the background and attributes of each of these invented women.
For my 30th birthday in 1989, Alan created a Miss Universe book for me, each participant inspired by an aspect of my life: Miss Connecticut, Miss California, Miss Sweden, Miss Poland, Miss France, Miss Arizona, Miss South Dakota. They were illustrated in their evening wear and were accompanied by a short prose poem. It’s one of the most amazing pieces of art I’ve ever seen…AIDS was particularly cruel to Alan. He suffered terribly in the final weeks of his life. The medical establishment treated him more like a science [experiment] than an ailing human being. Fortunately, I don’t remember him in this state but as the handsome, strapping, charming, boyish angel he was and still is.
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Ending on a hopeful note, while pointing out there is more to be done:
Ronald Dennis: I found out in 1984 that I was HIV positive when the ELISA test was released which detected exposure to the virus. In 1986, my symptoms began, weight loss, dripping night sweat, flu-like symptoms of the worst kind, on and off until I was hospitalised with “full blown” AIDS in 1990…I held on until 1996 when antiretrovirals arrived. They saved my life and I didn’t die at 43.
99% of the men of my generation are long ago deceased. My Black male friends are ALL GONE…I held on and outed my HIV status rather than hide in shame. It was hell what I lived through but here I am! I lived on and here I am at 76…I endured: Pneumocystis pneumonia (PCP) four times in three years. Non-Hodgkin lymphoma, twice, along with a host of AIDS related ailments…As the Senior Advisor at APLA for Project Rise addressing medication adherence among the young Black men in Los Angeles, the very same issues of shame, secrecy and resistance to taking their medication persist in 2021.
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