Today, December 1st, is World AIDS Day. It is a day dedicated to remembrance, education, and the ongoing fight against HIV/AIDS. For many survivors, including myself, it is a day of complex reflection on the unexpected longevity we now share.
It is in this spirit of reflection that I publish "The Long After: Survival's Unexpected Gift." This narrative explores the new frontier of life after the initial crisis, where the gift of survival brings with it its own set of challenges and profound meanings.
This essay is the newest installment in a series on my blog that chronicles my personal journey through the epidemic and beyond. If you are new to my story, I invite you to explore the arc of my experience by reading the previous essays: "Love and Intimacy in the Shadow of AIDS," "The Fabulous 5000," "The Fiddler's Bill," "Part I: A Caring Brotherhood," and "Part II: Prince Charlie."
On this significant day, may we remember those who paved the way for this survival, honor the resilience of the community, and commit to carrying the story forward.
I was, from the start, marked as 'different.' Sometimes adults used words like 'precocious,' or perhaps, 'pretty boy.' The latter was a fleeting, but perhaps necessary, truth—one that vanished as I grew older, leaving me merely common and gangly. This resulting lack of conventional appeal would become, I realize now, my first layer of defense. This early sense of difference, coupled with the death of my father, forged the necessary psychological distance—the essential preparation that allowed me to stand back and merely observe the coming calamity.
My older sister was also a study in difference; her sequence of relationships with women later confirmed what we had always, with a knowing silence, presumed. And at fourteen, my mother, who had perfected the art of strategic parental detachment, allowed me to spend Christmas Eve with her and her partner. That evening, my sister and her partner took me to a bar—Belle Watling's on 21st Street. It was my introduction to the life. The notable absence of women suggested, even to my limited intellect, that this was not a place to discuss needlepoint. I devoured it: the kind gentlemen who offered free drinks, the lighted dance floor. I was utterly captivated by the simple fact of the place, operating then without the slightest comprehension that this very gathering was already endangered.
I was, of course, entirely lacking in self-awareness. I hadn't yet reconciled myself to the truth that I was one of them. Nor was I the sort of youth men noticed: a hundred and twenty pounds at graduation, cursed with unmanageable, mouse-colored hair that seemed to defy both gravity and grooming. A truly compelling package indeed.
The move was 1982. I left home for Birmingham, attending UAB and attempting the role of 'young gay man.' By chance—or perhaps by the gravitational pull of the inevitable—I settled at The Claridge on Southside. Once grand, the building was then merely old, serving as a comfortable, aging repository for retired women and a rising number of gay men and artists.
I was granted proximity to the community before I ever dared to participate sexually. Looking back, decades later, the irony is stark. The very qualities that kept me tentative, quiet, and withdrawn—that simple, crippling lack of conventional appeal—may have been the unintended gift that saved my life. I was present at the party, yet shielded from the immediate consequence. The simple truth: I was saved by my own early failure to attract.
The Price of Witness
The news arrived in 1984 under the grimly polite, sterile pseudonym of GRID—Gay-Related Immune Deficiency. As if a new technical acronym could somehow sanitize a terrifying extinction. We heard reports of men disappearing in New York and San Francisco, but for a gay man in Birmingham, geography provided a temporary, foolish buffer. It was the mention of Atlanta that finally pierced the illusion, confirming the nearness of the physical threat.
The threat quickly became a personal imperative. I knew I had to submit to "the test." A good lesbian friend, displaying a solidarity that outpaced the compassion of the world, drove me to the county health department. Accepting the need and agreeing to the test was torture - but the true psychological violence was waiting for the results. Ten days. A mandatory follow-up appointment to receive the results in person, as if the news required a formal, official witness.
I was negative. My initial impulse—a ridiculous cheer—was swiftly replaced by the recognition that one doesn’t celebrate a victory in a game of chance. I could identify no moral or behavioral difference between my conduct and that of the men who received the opposite verdict. It was a statistical lottery, and my success felt like an accidental insult to the dead. And the trauma of the test never lessened; I submitted myself every six months as a kind of panicked, ritualistic observance.
The weight of the community’s despair became suddenly palpable at a New Year’s Eve party in 1986. After the obligatory, sentimental midnight kisses, the room broke into an unsettling, collective weeping—a truly dramatic finish to the year. I asked a close friend about the sudden, theatrical grief. He said, plainly, "Because not all of us thought we would live to see the end of this year—and some of us might not see the end of the next." It was then he began pointing them out: friends I had known for years, men who were already marked with a terrible secret I had been utterly oblivious to. The depth of that earlier unawareness—the sheer, functional blindness I required to maintain my life—is the detail that disturbs me still. By the end of 1988, four of the men I had embraced that night were gone.
This reality demanded a posture of action. My volunteer work at Birmingham AIDS Outreach (BAO), beginning in 1986, quickly transitioned from simple compassion into a structured, analytical engagement. The distance between observer and participant dissolved, but it was replaced by the need for strategic authority. By 1987, I was asked to serve on the board of directors, and by 1989, this activism formalized into a profession, launching my career as an HIV/AIDS corporate and social entrepreneur. This was the crucible where my professional expertise was forged in the heat of constant loss. The work became the necessary defense—a deliberate attempt to impose order and analysis upon the chaos I was increasingly expected to explain.
Art, Ambition, Ascent
As I matured, attempting to form the character I felt I needed to be, I was compelled to offer a deeper solace, an escape from the unrelenting mathematics of death. My official work was to impose analytical structure; my parallel, and perhaps slightly more grandiose mission, became to impose an inconvenient beauty.
In 1989, while a graduate student, a sanctuary through music took hold. A few friends and I began the Birmingham Community Men's Choir. This was not a frivolous pursuit—though the notion of twenty-one men forming a choir during an apocalypse was certainly absurd—it was a deliberate, communal intervention against isolation. Our debut concert was merely the thrilling icing on the cake; the meat of it, the “cake” was the sense of community we had constructed. For two years, the choir offered a crucial support system, expressing joy and defiance through art, and laying the foundation for future groups.
My eight years as a student at UAB—a span that netted a bizarre collection of degrees—was, rather, the sustained, deeply intellectual strategy of creative student loan deferment. This dual existence finally ended when recruiters arrived from Caremark.
I was hired, and the move was to New Orleans—a chance to finally afford life and make a living helping my community. Meeting my Prince Charming—my No. 2 partner, Charlie—was the perfect opportunity to move and push the reset button. Having been shielded by my earlier lack of appeal, I now embraced the inverse: a commitment to an ideal.
My move began a mindful and deliberate focus on continuous emotional enlightenment, self-awareness, more relational maturity, and a relentless pursuit of physical improvement. The goal was simple: to be better, to do better.
I was brought in at Caremark to address a critical challenge: translating compassionate care for people with AIDS into an efficient corporate model. My unique experience was leveraged to achieve a commercial solution. I was designated a strategic innovator and corporate entrepreneur, tasked with developing a profitable business model out of what had been treated as simple devastation. The true revolution was the design of comfortable, welcoming community spaces, which managed the impossible feat of simultaneously optimizing nursing resources and creating a more dignified service. I was pleased to prove that compassion, when properly managed, could be profitable.
The Architecture of Illusion
My professional arc carried me through Atlanta and eventually to South Florida, culminating in a settlement in South Beach—a perfect, overheated distillation of the inflection point the pandemic had reached.
By this time, I had acquired my No. 3 partner, or 'significant other'—a designation we grant men with whom we have lived and who we have managed to endure for more than a year. More crucially, he was my second consecutive partner who was positive, making us what the public health apparatus referred to with such cold precision: a sero-discordant couple.
I had made myself into a study in conscious, desperate re-design. I was spending up to two hours daily building a physical appearance that, by all external metrics, was the very physical ideal of a gay man. This ideal was confirmed during our travels to social and fundraising events. Yet, when I looked in the mirror, the triumph was never complete. I still saw that skinny kid with the mouse-colored hair. The attention, which I both relished and relied upon, was internally befuddling; the performance was flawless, but the validation felt empty.
Simultaneously, my professional reputation was expanding exponentially. I was supporting the growth of the first nation-wide chain of community-based HIV/AIDS specialty pharmacies, routinely traveling to 32 of the largest US cities. In these places, I was not merely a corporate representative; I met frequently with local HIV/AIDS community organizations, sharing best practices and cultivating a network of leaders. I was thus becoming a recognized expert—a key node in a national network of knowledge—setting myself up as an authority across the country.
My partner and I had built strong careers and friendships in South Beach. Yet, for years, so many gay men with an AIDS diagnosis had moved there to simply empty their bank accounts and die on the dance floor. This was a collective, final performance—a way to face death not with quiet despair, but by imposing a sense of dramatic control onto their fate. They were composing their own exits. Then, in 1995, science intervened: HAART arrived. Suddenly, the men who had executed a perfect, final plan didn't die. They were left, instead, with the bewildering, anti-climactic necessity of a future without a plan.
In response, I co-founded and led a critical, grassroots organization, South Beach AIDS Project. This was work of profound, necessary cynicism. We were building a localized safety net for individuals who were supposed to be dead, who were only now transitioning to longer, far more productive lives. It was the ultimate, satisfying bureaucratic challenge: creating infrastructure for the undead.
I meticulously built this infrastructure and personal empire—the career, the physique, the status—to master the crisis. But a monument built this high is, by definition, engineered for a long and catastrophic fall
The Inevitability of the Fall
It was this dizzying altitude—It was this dizzying altitude—this feeling of having mastered my appearance, my career, and the crisis itself—that ultimately betrayed me. The six years leading up to the year 2000 had been an exercise in absolute corporate mastery. I was on the deck of the boat, secure in the illusion of my own analytical, self-made safety.
But it was my own ego—the intoxicating high, the illusion of safety, and shared by my 4th partner—that led us to embark on an Albee-esque experiment: attempting to regain some of the emotional and physical intimacy that fifteen years of epidemic had forced us to deny ourselves.
And then, in June 2000, the analytical distance shattered. I was called away from an executive committee meeting. On the other end of the line was my No. 4, delivering a simple, formal sentence: "I'm positive." My mind, that marvelous instrument of denial, immediately processed it as his issue—an issue I, the expert, would support him through.
It took weeks—a profound, almost ridiculous failure of self-awareness—to finally submit to ja test, citing a naïve "abundance of caution." A few days later, I returned for the inevitable verdict. My doctor, a good friend and a veteran of this long war, had the terrible chore of saying the words: "John, I’m sorry to say you’re positive." The ability to breathe left me immediately.
I had only shared the situation with one close friend, who made me promise to meet him for lunch immediately after the results. I met him there, consciously avoiding eye contact as we sat. After a pregnant pause, he said, simply, "So..."
"I'm gonna be fine," I said.
The response was everything: the confirmation of the result, delivered with an obligatory, feeble hope. For so many years, I had stood firmly on the deck, managing the logistics, throwing lifesavers to friends and strangers. Now, I found myself in those same dark, murky waters, an ‘expert’ floundering for a lifesaver myself.
The Year of Necessary Seclusion
The year following the verdict was a period of profound psychological collapse disguised as quiet integration. I, who had stood in lecterns and educated hundreds, was now positive. The irony was so dense, so crushing, that it was nearly incapacitating. I gave myself a year—a calculated, necessary seclusion—to integrate this catastrophic shift, aided only by anti-depressants and a regrettable increase in drinking. I had to mourn my status, mourn the safety I’d lost, and mourn the men whose silence I could finally understand.
The landscape of a positive diagnosis is a terra incognita every person must navigate alone, yet its contours are tragically familiar. Some pivot from shock to resolve; others are arrested by a crippling denial. My path was an unwelcome apprenticeship in grief. It wasn't merely for the health I'd lost, but a profound, almost primal grieving of innocence. The foundational bedrock of my life—the unspoken assumption of safety and continuity—had been pulverized. Grief was less an emotion and more a persistent, uninvited inhabitant.
The challenge was not to get over it, but to find a way to cohabitate with this truth, slowly teaching myself that the only viable path to joy was through radical ownership and open integration of this new, unalterable self.
After a year of wrestling with fear, depression, and the internalized shame, I had gained the confidence to be outwardly, authentically okay. I devised the strategy of the Twelve: the individuals who would be most wounded by a second-hand announcement. I bought the plane tickets and scheduled the talks to occur over a single week. The conclusion of my disclosure was always the same: "Having been given this news myself by too many friends, I understand the weight it can carry. But I would ask that you please don’t talk to anyone about this until next Monday." By that following Monday, I had spoken to all twelve.
Everyone, bar one, responded with the compassion I had desperately hoped for. The exception was a physician, a friend, who began to yell: "How could you be so STUPID!? Of all people! I expected more from you! You've let us all down!" I simply stood and walked out. His outburst had only articulated the internal shame I had spent a year trying to suppress.
But his outburst, once survived, served as a final release. A sense of freedom, even power, came from that radical act of disclosure. The process of accepting, integrating, and finally embracing my new life meant knowing the whole world could know, and that I would, authentically, be fine.
A Medication Labyrinth
The profound psychological resolution of my seclusion—the hard-won peace with my status—did not, of course, align with the medical reality. My physician now delivered the next, equally absurd truth: the current orthodoxy dictated I wait. My body was still robust, but I, the man compelled to action and analytical control, was now told to do nothing.
I was forced into an insane, internal negotiation with my own mortality: to wait until my body's innate defenses were visibly failing, to welcome the biological metrics of my own decline. This anxiety was compounded by the memory of the early years, having watched too many friends suffer through the debilitating toxicity of first AZT and the nascent HAART cocktails. It was this fear of poison, not a lack of commitment, that compelled me to agree to hold off on treatment.
Behaviorally, the shift was simple: after years of strictly practiced safer sex, abstinence during the year of disclosure was an easy, even necessary asceticism. But beyond that year, maintaining intimacy required maneuvering the moral minefield of self-disclosure. My own moral imperative—to only be intimate after honest disclosure from both—meant that every potential connection involved revealing a part of the self I had just fought so hard to integrate.
Two years into my diagnosis, the medical consensus shifted, and my doctor and I agreed it was time to start HAART. Now, the challenge was logistical. I, the corporate strategist who designed efficient care models, faced the bewildering inefficiency of my own treatment. I realized the ingredient was less important than the dosing schedule. Adherence, the single greatest predictor of success, demanded a protocol I could take just once a day.
This medication hunt was no easy feat. In the early 2000s, effective therapy required four or five medications in combination, yet few offered the once-a-day dosing I prioritized. I was, effectively, painted into a corner over the course of those first five years—a relentless search for a therapy that was effective, tolerable, and offered the best chance at lifelong adherence.
But fate wasn’t done. In June 2002, I lost my job, and subsequently I lost everything—my car, most of my belongings, and eventually my home. I was homeless. I extended my health insurance through COBRA, but when I met that limit, my coverage lapsed and I could no longer afford healthcare. For over two years, I went untreated and my health faltered. Ironically, the instability of being unhoused along with the associated mental and emotional paralysis made it almost impossible for me to engage supportive organizations like those I had pioneered years before.
By 2010, my medical condition, treatment regime, and emotional state were all stable - and all I wanted was to live a life without HIV/AIDS as the focus—a necessity born of sheer, exhausting survival. For the first time since 1990, I asked for a job that had NOTHING to do with the disease. Yet, the commitment to social good remained. My roles shifted to the government sector, tackling the complexities of integrated care models—developing and scaling continuity across the entire ecosystem of pharma, patient, provider, and payer. My success in fixing these systems was, I realized, made better, sharper, and more compassionate because of my intimate, personal experience as a patient and consumer within that very broken system.
The Complexity of Survival
You live long enough, and you earn the right to the absurd. The terrifying urgency of the early years has given way to managed entropy—a state of existence that, by the time you're 60, is pleasantly rote. Life is good and stable, except, of course, for the predictable decay of the machine and the logistical nightmare of its maintenance. Even the isolation of COVID became just another variable to manage.
The body, having survived the plague, now wages a silent, private war on a dozen fronts. The side effects of the virus's history and the necessary interventions manifest as a litany of insults: failing eyesight, teeth, and joints; dropping testosterone, thyroid; high cholesterol and blood pressure—and, to top it off, hay fever! To be a compliant patient is no longer a virtue; it is a full-time, six-sigma management project. One requires a dedicated spreadsheet merely to keep pace with the sheer volume of medications and their refill dates. And God help the person who finds they have no refills or that an annual prior authorization is required. The system demands so much effort that I’m not sure how I have time left to simply live. I realize the life I saved by passively observing the plague now requires my full, relentless engagement merely to endure the cure.
But this is the final, cynical truth of survival: this suffocating logistics has become life. My own fortune—the good insurance, the stable career, the sheer administrative capability to navigate this labyrinth—only throws the harsh truth of the system into stark relief. Not everyone is fully insured or capable of managing this overwhelming complexity. For them, things are skipped, doses are missed, and conditions are left untreated. The gratitude I feel is inextricably linked to my profound understanding of the injustice. It is this failure of the system, this monstrous administrative burden, that drives my desire to comprehend and assist those who are not so fortunate.
The Final Metamorphosis
And then, you're 63. The body, having survived the plague and endured the bureaucratic war, demands a final, crucial adaptation. The furious pace of my younger life—long runs, weekend races, the heavy lifting aimed at looking buff—has given way to the necessary compromises of longevity: a daily quick two-mile walk, light lifting, stretching, and the gentle, ironic discipline of "chill yoga." But the life, despite the modifications, is still well-lived.
As I age, I find a shift in my emotional architecture. I like to say I'm becoming more "fragile," if only to observe the startled expression it provokes, but the truth is a creeping sensitivity. Whether part and parcel of the aging process or a mere reflection of the anxious times we all inhabit, challenges with anxiety have quietly asserted themselves. But alas, as always, we find a way forward.
This final chapter of transformation is defined by acceptance: of my diagnosis, my age, and the sheer complexity of my personal history. I have comfortably settled into the identity of a (tongue-in-cheek) well-dressed, somewhat erudite older gay man.
If I have learned anything over the years, it is the ability of a human to grow—not just change, but to become something more. So I embrace my new life with excitement. I no longer live in the image of the young ideal, but as a proud elder statesman. I have always listened closely to my gay elders, because they forged the way for me. I try to use their lives—their works—as a guiding light. Who knows what adventures or perils wait around the corner. For now, I am hopeful - but a bit cynical. And, considering everything, can you blame me?
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