Showing posts with label living with HIV. Show all posts
Showing posts with label living with HIV. Show all posts

Wednesday, April 26, 2023

A CHANCE TO UNDERSTAND AIDS IN THE 21st CENTURY


With COVID restrictions loosening by January of last year and feeling a little more secure after getting double vaxxed, I decided to expand my Reentry into Civilization. I would return to one or two daily writing sessions in various Vancouver cafes, as was my custom pre-2020, but I would also commit to being a regular volunteer for a nonprofit. 

 

It just so happened that the place I was most interested in was less than two blocks away. I’d popped into AIDS Vancouver before the Christmas holidays and filled out a volunteer application. It made me feel like fifteen again, when I had to fill out a form to be a busboy at Papacita’s, a Mexican restaurant in Longview, Texas. There were more things I could fill in this time, but there was still an air of humbling uncertainty. Am I worthy? Being passed over for a chance to clear taco dregs, plus all the tortilla chip bits and salsa drippings on the tables and seats, would have felt humiliating, but being told by an agency, “We don’t want your free help” made the stakes seem higher. 

 

It took almost a month before I heard back, the executive director apologizing about holiday shutdowns and his own January illness. We chatted on the phone for a little bit and it seemed like a collaborative decision that I’d serve as the agency’s receptionist Monday mornings after first coming in for eight hours of training and going through my paper copy of the receptionist manual which included detailed instructions about photocopying, transferring emails, answering calls, retrieving messages, reserving rooms and so forth. There were also opening and closing procedures as well as plenty of codes and passwords.

 

There was a distinct sense of nervousness as I began my training day and I seemed to perspire every time I had to take a call under the scrutiny of my trainer. COVID had made my people skills go to rust. Moreover, the only phone calls I’d handled in the last five years were to my mother and customer service representatives who walked me through my recurring internet challenges or threw up barriers to refunds related to my Epic European Vacation which got dashed when we went into Worldwide Lockdown. Basically, all phone calls within memory involved me being testy. I suspected I’d need a different approach when answering calls at AIDS Vancouver. Getting fired as a volunteer would be even worse than getting passed over.

 


One thing I’d forgotten is how I have a tendency not to hear the first second or two of what a person says on the phone. Is it a legitimate hearing problem? Do my ears just require time to adjust? It suddenly seemed like a significant handicap when answering phones was a fundamental part of my volunteer position. My struggle was further magnified by the fact many callers sounded groggy, their voices muffled by illness, the effects of medication or a morning coffee not yet doing what it needed to. I typically needed the caller to repeat who they were and who they wanted to speak with—basically, the entire essence of the call. 

 

I sensed that, if I wasn’t fired, I’d have to quit. I didn’t have what it took to be a receptionist.

 


Still, I stuck it out. I became less embarrassed asking people to repeat themselves. I may have even gotten a tad better at getting my ears to tune into the call quicker. It seemed to help when I slowed my greeting—“Gooood morrrning, AAAAIDS Vancouuuuver”—allowing my left ear to settle beside the receiver before the caller launched into their spiel.  

 


My overall goal in volunteering was to get back in the loop regarding the current state of All Things AIDS and HIV. I’d spent the year prior reading daily posts on The AIDS Memorial’s Instagram, where loved ones pay tribute to people who have died of AIDS. Many of people being remembered had died when the ravages of AIDS were at their worst, unchecked by protease inhibitors which didn’t begin to save and extend lives until the mid-’90s. Still, there were some people being honored who’d died within the last five years: “longtime survivors” and people who’d more recently gotten AIDS, the stigma, their geographical location in this world or other issues keeping them from a regular medication routine. 

 

No. As I reflect, gaining an understanding of AIDS today, while important, did not surpass my need to remember what had been. The AIDS Memorial posts took me back to the bleakest years of the AIDS crisis. The photos and the written accounts confirmed that, yes, all of it happened. How quickly, it seems, the world and most of the gay community moved on. I wanted to do something more to honor magnificent loves lost—talented people who’d had much more to offer, regular folks with ordinary lives like mine and dear friends and acquaintances who didn’t live long enough for us to one day reestablish contact as Facebook friends, receiving that annual nudge to reach out and wish one another happy birthday.

 

AIDS shaped my years of coming out. When I first told my parents I was gay, my mother’s immediate response, through tears, was, “Can’t you abstain?” To her, my identity meant death. I can’t blame her. I had acquaintances who ignored safe sex practices, resigned to the fact early death was unavoidable. More than once, I heard someone utter, “Only the good die young” as a twisted defense to not being more responsible. Conservative, vile outsiders cast AIDS as God’s wrath while a few gay men viewed AIDS as a badge of honor. I’m living my life to the fullest. No fear. 

 

I volunteered for a year, adding on an extra month to make up for many missed shifts as I continued to travel to places near and far. Sometimes it’s hard to ascertain what I learned and whether I made any difference at all.

 

At times, I felt like I represented a slight relief to the organization’s operating budget. Working reception is a paid position in the afternoons; thus, each of us who volunteered in the mornings provided a savings. It wouldn’t be my phone skills that made a difference, but some other program or paid position continued to be funded on account of volunteers. If that’s all that came of my time, I’m okay with it. I don’t need pats on the back and gushy thank yous. I’m an under the radar kind of guy.

 

Many of the clients I encountered seemed to struggle financially. The agency offered a supplemental food bank—not a primary source for meals—and it was well-subscribed. On many occasions, I also headed to the back in search of clothes, shoes, backpacks and other items that might make a client’s means of living a tiny bit easier. Across from my desk was a resource room where some clients (and non-clients) dropped in to use a computer, to grab a coffee and a donated snack or to just plop down in a chair, out of the rain, the cold or the heat, away from more chaotic situations on the street and in shared housing spaces. Some clients with no fixed address or who didn’t want sensitive mail arriving at a shared residence picked up mail delivered to the agency. 

 


I learned more about comorbidity and harm reduction. Whereas I recall free condoms and lube passed out back in the day (they’re still available), there were clients who stopped in to pick up free bubble pipes, sheets of tin foil and fentanyl testing strips to ensure that drug use was cleaner and safer. No judgment. 

 

I also learned more about how the LGBTQ spectrum is getting broader. I’ve known this from reading articles online, checking out books, scrolling Twitter and watching the occasional news segment or documentary. But there’s nothing better than direct contact with people who identify as trans or nonbinary, knowing they’re here, they’re queer and, yes, I’m getting used to it. Often, it felt as though I was getting more out of my volunteer stint than the agency and the clients were getting from me. That’s typical, isn’t it?

 

Still, there were many moments when I wondered what the point was of my being there. Technical skills have never been a strength and I would cringe each time I’d accidentally hang up on a caller. I’d pressed the wrong button to put them on hold. I’d tried to transfer them and messed up. I couldn’t scan or print something. There were so many questions I couldn’t answer. I’d never felt so incompetent at a job. What if the desk were unmanned (unpersonned?) and messages when to voicemail until the paid receptionist arrived after lunch? There would have been a spike in anxiety while clients waited—clients were often anxious about whatever issue had become so pressing as to push them to seek guidance and support—but it was rare that I could offer a direct answer that would alleviate the problem. All I could do was transfer the call to a social worker or, more often, that worker’s voicemail or monitor offices back in the locked hallways to see if and when a social worker stepped out of a meeting or finished up with another client. Basically, I was a traffic guard, trying to keep matters flowing while not having the ability to change a client’s situation firsthand. 

 

I had some clients call repeatedly over the course of a morning. “Is she available now?” “How about now?” “Did you tell her this is urgent?” There would be heavy sighs and subtle or not so subtle references to how the delays were making a dire situation even more problematic. They were helpless and, in those moments, I felt as much so—granted, without the personally dire predicament. Being a volunteer is a privileged experience.

 

When they dropped in, they were doing relatively well. Most didn’t risk coming to the agency when their health was at all compromised. Presumably, they didn’t want to take chances seeing how COVID might mix with being HIV+, even when undetectable.

 

There were many one-off tasks never contemplated in the training manual. One man, waiting for an appointment, used the restroom room, then approached my desk and said in a hushed voice, “I think the toilet seat needs to be cleaned. Someone made a mess.” Yes, of course. I’d worked in homes of people with AIDS in the early ‘90s. I knew about diarrhea; I’d had to empty urine bottles. I took out the key for the janitor’s closet, donned plastic gloves and ventured in. The toilet was fine. Not spotless, but better than most public toilets. I scrubbed anyway. Maybe I was helping ease someone’s OCD.

 

One day I threw out my back after getting pulled into a strange sort of threesome. There was a homeless gay couple who’d moved to Vancouver from another province. One man was in his forties and dressed casually, the other was in his twenties, always clad in groovy vintage clothing—platform shoes, floral print blouses, daring sherbet-colored pants. They were always polite, but I registered with them about as much as the cubbies stocked with harm reduction supplies. They’d approach me to pick up mail or to ask to speak to a social worker and then get back to their own world. The younger man showed up one morning, asking if I’d seen his partner. I hadn’t. He paced back and forth from the waiting area to the resource room, often sinking into a chair by the phone ten feet away from me that was available for clients. At one point, a mournful wail filled the room as he held the phone. I rose, thinking he was experiencing sudden physical pain. Then I heard him say into the phone, “I thought you were dead.” He cried and I found myself reaching for the box of tissues, dabbing my own eyes. When his partner stepped off the elevator an hour later, there was no emotional reunion. They were back to doing some sort of tasks in the resource room, only turning to me to ask about snacks. I heated up some breakfast wraps, made another pot of coffee and resumed desk duty until the man in his forties fell in the reception area. I helped him up. He fell again. His body was deadweight, but I got him up again. His partner appeared and, rather than sitting and resting, they asked for help getting onto the elevator as they left. I worried about them the rest of the day, my back pains not allowing me to forget.

 

Another time a trans woman on the phone sounded irked and distressed. Her social worker wasn’t returning her calls fast enough. She started unloading all her stressors on me. My god, life was tough. She kept cutting people and nonprofits from her circle. People were doing her wrong and she was filing complaints to hold them accountable. Due to my hearing challenges and her emotional state, I kept having to ask her repeat things. This was making her more agitated and I apologized, adding the explanation, “I mishear things.”

 

She became outraged. “Did you just call me ‘mister’?” 

 

Suddenly, we were both taken aback. I blanked for a moment. Where did her accusation come from? When I managed to replay my own words, I figured out she’d taken “mishear” for “mister.” I clarified, she paused. Then a laugh. I was her bestie for the final five minutes of the call. She was still stressed and I still couldn’t offer any of the direct support she needed, but I’d been an ear, hearing-challenged and all.

  

The last call of my last shift seemed like an odd sort of closure for the entire volunteer experience. A caller didn’t even wait for me to get through my greeting spiel before saying, “What’s the number for Loan Express?” Naturally, I surmised I was mishearing again. She repeated the question, a tinge annoyed. 

 

“I’m sorry,” I said. “We don’t offer loans. Do you need to speak to a social—?”

 

“I know, I know,” she said. “I just don’t have internet. You got a computer. Can you look it up?” I shrugged. I typed on the keyboard. I gave her a number. She called back five minutes later. I hadn’t done it right. “There’s another one,” she said. I found another number. She didn’t call back. At least, not on my shift. Presumably, she knew The Other Guy, the paid receptionist, was due to start in a few minutes. Her loans needs would have to wait. 

 


Overall, I’m still not sure I learned anything new about HIV and AIDS. If anything, I have a clearer image of people living with HIV, a welcome counterpoint to visions I’ll never fully shake of people dying of AIDS. I knew this going in, but seeing people negotiate non-medical aspects of life offered a welcome update. Food, housing, transportation, mental health and connecting with others remained issues that required ongoing support. 

 


My role wasn’t to solve or alleviate these things. I committed to being the polite, friendly dude, greeting drop-in clients with a smile covered up by the mask I was required to wear. (Shout-out to Tyra Banks for trying to teach me smizing, aka, smiling with one’s eyes.) I’d like to think my smile came across on the phone too…in between “Pardon” and “I’m sorry. Could you please repeat that?” 

 

Snapshots stay with me. There was the scruffy man I fed one day and offered extra snacks against protocol, then scrounged up donated clothes roughly his size, a toothbrush, toothpaste and disposable razor. He asked for directions to the restroom and stayed in there so long that I started to panic about giving him the razor. Was that against protocol, too? I peeked in and the floor was covered in liquid—water, not blood. (I headed to the janitor’s closet to get a mop ready.) He emerged with a faint smile, clean shaven, perhaps the finest Before and After specimen I’d ever seen. 

 

There was the older mom whose son had been admitted to hospital the night before. Since she wasn’t a client, I couldn’t refer her to a social worker, but I gave her information to offer her son if he wanted support and I offered plenty of information about how to advocate for him at the hospital I’d learned to navigate from my own admissions. She lingered, the worry lines on her face softening slightly as she hung out by my desk. Things evolved from me giving information to providing distraction.

 


There was the trans woman in the wheelchair who seemed to crave any kind of human interaction. She’d regularly share a corny joke of the day which I always laughed at. She beamed when she showed me the free professional photos she’d sat for on the weekend when a trans photographer wanted to uplift others. “I updated my dating profile with them,” she said. “Suddenly, I’m alive again.” She and so many others.

 

Small things are bigger than they may seem. 

Saturday, May 22, 2021

THEY WERE LOVED


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.

 

*

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.

 

*

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.

 

*

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.

 

*

My sister Dorothy (aka Nicole) and her husband Jason both died from AIDS, Jason in 1987 and Dorothy in 1989. They’re very missed.

 

*

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.

 

*

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.

 

*

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.  

 

*

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.

 

Sunday, September 21, 2014

A WALK IN THE PARK


Beautiful September day! Sun shining, temperatures warm but merciful thanks to a gentle ocean breeze. Perfect day for a walk in Stanley Park. This walk is more special, more than just an extension of summer. This is AIDS Walk Vancouver. It’s a far cry from the chilly, rainy day last year when I walked alone along with a threadbare entourage dedicated to the cause. This time I have a good friend with me and the larger group, while nothing the size of the hordes from twenty years ago, is boosted by a human injection as well.

                             
 
 
                             
 If you are a teenager now, it is unlikely that you knew us well. We are your shadow uncles, your angel godfathers, your mother’s or your grandmother’s best friend from college, the author of that book you found in the gay section of the library. We are characters in a Tony Kushner play, or names on a quilt that rarely gets taken out anymore.
       --David Levithan, Two Boys Kissing

AIDS Walk numbers will never match the masses from a generation ago. That’s a good thing. Great strides have been made in terms of research, treatment and other care issues. Still, I feel that those of us who lost and feared the most back then have to recommit to the cause. Without the urgency, the front-page headlines and the sensational letters to the editor, people less impacted by AIDS are no longer stirred to action. They have moved on to bike rides for cancer and opportunities to garner several dozen YouTube views from getting cold water poured on their heads.

I am one who believes each person’s charitable priorities should be private—only you, the organization and the taxman need to know. I will, however, continue to post about my renewed commitment to supporting AIDS charities to encourage you to consider whether there might be something in your wallet that can go to a local AIDS entity. The competition among charities nowadays is fierce. All the more reason why we must keep AIDS in focus.

It was an exquisite irony: Just when we stopped wanting to kill ourselves, we started to die. Just when we were feeling strength, it was taken from us.
 –David Levithan, Two Boys Kissing

This year I walk in honor of my friends Farrell and José. Farrell was a guy I befriended in a tennis class in Dallas in the late 1980s. We formed a tennis connection that evolved into a friendship, albeit one that was limited by our reserved dispositions. Only after he visited me in L.A. did he come out to me in a letter, the self-hate as a lifelong Bible Belt native pouring out on the page. By telling you I’m gay, I know you must detest me. I wrote back to say that what I truly detested was the fact both of us felt so compelled to live(?) in the closet. The friendship became stronger but not enough for him to tell me he was sick with complications from AIDS. I only found out in late 1994 when a letter I mailed was Returned to Sender with “Deceased” stamped on the front. There was no funeral service.

José was a friend I met in Malibu while I was going to law school. He owned an independent clothing store in a large space that is now a Banana Republic. José was a jovial individual, the guy whom everyone in my group of club-going gay friends kidded, sometimes mercilessly. He played into it, soaking up any kind of attention. He was generous to a fault, sweetness to the core. In 1995, after I’d moved to Vancouver, a friend called to say José had died suddenly. A brain aneurism. Two summers ago, as I had dinner with that friend, the real story came forth. He’d died of AIDS, but the shame was too great. None of us knew. He retreated and died alone.

For both Farrell and José, the shame was too great. It saddens me to think they couldn’t reach out. I know that each died completely alone.

This is part of the past devastation from AIDS. This is what I cannot forget. This is why walking remains imperative. Circumstances are drastically different, but I need persons with HIV or AIDS to know they will continue to be supported. I know that shame remains. I read it in the dating profiles of men who are HIV+ and I occasionally see it manifested as anger on Twitter.

This is not over. AIDS still matters.