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Living in the Afterlife With HIV

By Jeffery Allen

November 30, 2012

Jeffery Allen

Jeffery Allen

Occasionally, we here at TheBody.com are lucky enough to hear from readers who volunteer to craft their own articles, sharing their stories and thoughts. This is one of those articles. This piece originally appeared on Thought Catalog.

We do our best.
We stay in step, as time goes marching by.
But there's something wrong
We don't start living until we almost die.

-- Melissa Etheridge

Twenty years ago this year, my life reached a turning point and I began a journey that would take me from terror and despair to a place of profound peace, the likes of which I had never known. This journey of fundamental transformation started with an event that took me from the life before to the life after.

It was August 19th, 1992, one week after I had been to my doctor for my annual physical exam. His office called me at work and said he wanted to see me in-person about something. That seemed strange. He had run the usual routine EKG on my heart (I have a minor and benign congenital arrhythmia), but that provided immediate data showing my heart was just fine, so it couldn't be that. He checked me for skin cancer spots (the medical drawback of being fair-skinned), but again, determined right there that I was fine. My blood pressure was normal and my cholesterol was always astronomically low, so I wasn't concerned about that, but it had to be something that showed up in a blood test… what could it be ... OH MY GOD! I froze in terror. I'd have sworn that my pounding heartbeat was audible to my coworkers. I remembered ... as he was drawing my blood a week earlier, I nonchalantly said to him, “oh, you might as well throw in an HIV test so I can just get it out of the way now,” not thinking for one second that the result would be anything but negative.

Hoping for the best, but prepared for the worst (or so I thought), I sat in his office and listened to him tell me from across his desk that I tested positive for HIV. At that moment, all time stopped. I remember I lost all audible perception of ambient sounds. His entire medical office and the whole world seemed to go completely silent, except for the sound of his voice in slow motion. It was like listening to a 78-vinyl record played at 33-speed the way he uttered those three letters: H-I-V. He offered me no words of comfort. For that matter he had no reassurances of any kind for the simple reason that there weren't any. It was also painfully obvious this general practitioner knew nothing about this disease or what my options were, not because he said as much, but by his gruff tone when I started asking him questions that he couldn't answer.

All of this occurred during my lunch break, so I had to go back to the office and try to keep my composure while digesting the revelation that I had contracted a fatal disease. My boss wasted no time chewing me out for returning late from lunch. I was in a fog, but I vaguely remember uttering some form of acquiescent apology. Something about my facial expression and affect must have caught his attention because he uncharacteristically backed down and told me it was okay. When he gave me something to deliver to another part of the office, I used that opportunity to duck into the stairwell and cry for about five minutes, until I heard someone enter. I tracked down Dario, who was my one close friend at work. I pulled him into the office kitchen, told him what happened and he stood there and cried with me for a minute.

At that time, I had a roommate who was himself HIV positive. As soon as I got home from work, I dropped the bomb. He wasn't a particularly warm and fuzzy kind of roommate, so I wasn't expecting him to break out singing, “the sun will come out tomorrow…” No, he just laid it all out for me in five minutes and what he lacked in emotion, he made up for in gory details. He told me what I had already known -- there was no cure and no viable treatment for what I had contracted and the only thing that medical science could give me was some comfort from the effects of the opportunistic infections and maybe a little extra time. I knew I had to come to terms with my imminent mortality. The fact is that twenty years ago, what was handed down to me was, in effect, a death sentence. In 1992, there were no treatments for HIV, besides AZT, which was the pharmaceutical equivalent to plugging up the hole in the Titanic with a wad of bubble gum. There was no getting around it. I was in for a slow and painful death. All conventional wisdom gave me a life span of roughly 10 years. My path through life had reached a continental divide separating life before HIV and life after.

There I was, a 26-year-old ambitious and vibrant young man and I was expected to suddenly accept the idea that I had fewer years in front of me than I did behind me. What made it worse -- I was alone. I don't just mean single, I mean alone -- no partner, no family, and only a handful of casual friends. Like every other storm I've weathered, I had to go it alone. That aspect of it was nothing new to me. I've had to learn how to manage loss and disappointment in my life simply because there was so much of it. When something particularly traumatic happens, I employ what I call the 24-hour rule. That means I give myself 24 hours to break down, cry and wallow in as much self-pity as I want. After that, I cut it off and move on. That way, I can express and validate my feelings, but not let them overtake me. However, I did bend the rule this one time and let it drag out for a few days.

I then did what I always do when I'm faced with an obstacle that I don't understand ... I sought to understand it. My roommate fixed me up with his doctor at a place called Pacific Oaks Medical Group. They were experts (in as much as there were any) on HIV. They were also one of only a handful of medical practices that were conducting focused, hard research on the treatment of this disease. I was very fortunate to be a patient there. I also found a support group.

My first few meetings with the doctor and the support group were of little comfort, simply because, quite quickly, I realized nobody knew what the hell they were doing. There were no established treatment protocols. There were no experts in the field. It was apparent that they were making things up as they went along and I was there not just to receive medical care, but also to provide them with valuable research data. I just rolled with it and learned to ask questions and keep asking them until I was satisfied with the answers. I sought to understand every bit of the decision making process, because I was in fact the one making all the decisions. The days of blindly accepting my doctor's advice and just trusting that he knows what's best were over. I got to know every aspect of that damn virus -- how it spreads, what it does, and how it reproduces. In the meantime, friends and acquaintances were dropping like flies. Every weekend, there was a funeral for someone I knew from the gym, or from a bar, or a friend of a friend. That didn't exactly strengthen my resolve. My outlook was pretty bleak. But somehow, somewhere in the midst of that solitary despair, I had an epiphany. Out of nowhere, it occurred to me that nothing was going to happen to me that wasn't going to happen to everyone -- I was going to die. There, I said it: “I'm going to die.” There was something very liberating about saying it and finally accepting it. I'm going to die ... The acceptance of that truth started a profound transformation in me.

While all of this was taking place, I was working in the entertainment industry at the high-powered William Morris Agency. I had ambitions. It was a small-town-boy-makes-good story and I was moving up in the world. I was an Agent's Assistant working in the Music Department. I had a background in TV and Motion Picture Talent from another agency, and I was slated to move into a newly created department called Music Crossover. I would be representing the big A-list music clients to get them TV and movie deals. This function came on the heels of Whitney Houston's success in The Bodyguard. I had spent 10 years positioning myself for this and I was just inches away from my goal. Now all that had changed ... or rather, I changed. I started taking a good hard look at the people I worked with -- not the grunts like me, but the agents, the managers, the partners, the people who made it -- the people who were successful doing what I had been working so hard to do. I'd always been painfully aware of how rude, arrogant, pretentious and self-absorbed these people were (this was the entertainment industry after all). But what I suddenly understood was their rudeness and otherwise miserable affect wasn't just a circumstance of their success -- it was an essential component of it. You basically had to be an asshole in order to make it in Hollywood (or at least that facet of the business). I guess when it was before, their horrid personalities didn't get to me because I didn't believe I had to emulate them to effectively do my job. Now in the after, I realized that, in order to be one of them, I had to behave like them too, and I couldn't do it. I didn't have the capacity to be that person. I didn't want to die an asshole. Suddenly, my dream of the glamorous Hollywood life felt neither glamorous nor dreamy. My solution was clear. My choice was simple. I walked away. I just got up, and walked away from all of it and I never looked back.

That decision was the first in a long line of choices that snowballed into the person I was becoming. It was the start of what I had accepted to be a meaningful albeit short life. If I only had 10 years to live, then I was going to make that 10 years count for something. I'm a survivor. Even before all of this, my life wasn't easy or privileged by any measure. I won't go into detail here, but suffice it to say I had already overcome a hell of a lot of adversity in my short life. As cliché as it might sound, I became determined to live my remaining life to the fullest, to enjoy it, to savor it, to take in and experience every moment that I could. I started getting up early in the morning and going on hikes to the top of the Hollywood Hills just to watch the sun rise over the city. I threw every stressful and toxic friendship out of my life (which didn't leave me with many) and spent my time in the company of good-hearted, good-natured people. I wasn't doing all of this just for my mind and spirit; it was also for my physical health. I learned that staving off HIV meant pouring all of my energy and focus onto maintaining healthy habits of living. That meant eating right, getting plenty of sleep, managing my stress, exercising, etc.

Around three years into the after, I was approached by my doctor about volunteering for a clinical trial. There were drugs in development that were designed to suppress the HIV virus and they wanted to know if I would participate in the study. I figured if there was a chance they could prolong my life by a few years, then it would be worth the effort and the side effects, so I agreed. The effort was minimal, but the side effects were not pleasant. Some pills made me nauseous. Others made me horribly lethargic. Some had to be taken with food, some on an empty stomach. One even caused me to pass a kidney stone.

Little by little, trial by trial, the medications kept improving. The side effects were fewer and eventually non-existent. It wasn't just the side effects that improved. So did the viability of the drugs. People weren't getting sick anymore. Opportunistic infections were no longer the specter they once were. The funerals became few and far between. It was the end of 1999, just before the new millennium, that my doctor informed me that my viral load (the measurement of HIV reproduction in my body) was undetectable and my T-Cell count (the strength of my immune system) was about that of what it was in the before. The medications I was on were working, they had no side effects whatsoever, and I was not developing a resistance to them. Coupled with the fact that I hadn't yet experienced any noteworthy opportunistic infections as a result of my HIV, this news meant that I was not going to die a premature death because of HIV. I am going live just as long as I would have before all of this happened.

That's when it hit me. It was at that moment that I realized I wasn't cursed with a disease. No, I was blessed with a gift. You see, I was driven by the fear of death to step outside myself and strip away all of the vain, self-indulgent and meaningless pursuits and acquisitions that I centered my life around. I was compelled to seek out that self-actualization -- that connection to God and my higher power -- a connection that most people don't make until they're on their deathbed. My perceived imminent death pushed me to reconcile not only the mistakes I‘ve made, but be at peace with the wrongs done to me. Then, with all of that insight, and peaceful resolve -- with my feet grounded in mother earth and a connection with my higher power, I was given back my life and longevity. I consider myself so very lucky, because I get to feel that end-of-life peace that comes with mortality, and I now have my whole natural lifetime to enjoy it.

Had I not gotten this pink slip from God laying me off from life, I would probably now be a chain-smoking, arrogant pretentious Hollywood asshole, hating my life and hating who I had become. And the miracle wasn't just what happened, but also when it happened. Had HIV arrived earlier in my life, the life-sustaining medications that I'm now on would likely not have been developed in time to stave off HIV and prevent it from becoming AIDS, and I would now be dead. Had it arrived later than it did, the medications would have already existed, rendering HIV nonlethal, and none of this metamorphosis, born of my perceived imminent death, would have taken place. The timing was as perfect as the purpose.

Twenty years ago this year began my journey of transformation through a place I call the after. Now, I'm living the after-life.

About Jeffery: "I'm one of the nicest guys I've ever met. That's one personal attribute of which I'm most proud. I've had what feels like 100 years of life experience stuffed into a 46-year (so far) life span, with about 15 seconds of actual childhood as a foundation. I'm happily committed to my partner of nine years. At present, I work at Founders Metropolitan Community Church in Los Angeles. I'm attending classes to get my bachelor's degree and taking writing courses on the side. Where I go from here, I don't know, but I know it's where God wants me to be."




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