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How I learned AIDS = Life

Living with HIV

April 1999

Despite the two straight lines that seem to make my life equal AIDS, it was a winding path that now makes AIDS equal LIFE.

I didn't begin to feel my life was worth living until after I passed my teens, but by age 22, I had been diagnosed with what we now define as AIDS. I expected the diagnosis; it was going to confirm my plan that life would soon be over. Yet, in a weird twist, it was in some ways just the beginning.

The wild turns continued as I moved to the west coast. I remember looking out to the ocean wondering what was ahead of me, if there was any reason to have hope. I knew there were at least two directions, but expecting a downward spiral was more normal thinking. I mean, sure it was scary, but it had become more natural to fear and think like this was the end.

Despite appearances, inside I had become a desperate addict with a fatal disease. "If AIDS is going to take me soon; I'll go out with a party," were the words spoken more than once in early-morning bar conversations. Looking back it would have been more accurate to say, "Should I go now, I'll go in the same manner in which I lived in a dark and painful world."

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I thought looking down was scary until I realized the terror that filled me during the times I had instead looked up. Perhaps in standing at the edge there was no relief from the blinding light ahead. Believing in myself -- my body, my brain, my dreams -- was more terrorizing than imagining the end. At times I saw my dreams as false hope; wild, misguided fantasies I would never be equipped to realize. At times I remained frozen in a state of self-doubt. Past successes and future dreams were to remain distant, lest I risk the embarrassment of more failure.

I had some previous successes in life but now their pleasure faded. For most of my life my favorite pleasures were making and managing money. I graduated from a kid playing a four-person game of Monopoly all by myself to obtaining mini Park Place condominiums in my 20s. I was in Texas at a time when no one wanted to own and no one wanted to loan money for real estate. Having none of my own, I used 100-percent borrowed money to achieve multiple ownership.

In my real career, I landed an entry-level job working for the second richest woman in America. I had worked smart and without college earned a hotel management position in a company whose three hotels were in the top 10 hotels of the U.S. At the age of 22, I was younger than my employees and succeeded by teaching professional self-confidence to bring unskilled workers into the refined profession of caring for the social elite. In retrospect, I trained others to have a professional self-confidence, yet retained none of that confidence in my own personal life.

Within one year I became sick and diagnosed with 200 T-cells (AIDS), after which I began purchasing condominiums! Soon, 10 years passed since my doctor had hinted at the date of my death announcement. As years of life were added onto my diagnosis it got harder, not easier, to believe. I burned every bridge getting into this; I could not believe there actually might be a way out.

I walked the beach of southern California in solitude. Despite the light of the sun crystalizing the water and sand all around me I knew I was seeing in the smallest possible window a vision of my survival versus a nightmare of my own shortened destiny.

A life past 30 was more than I ever knew to hope for so I didn't necessarily get a bad deal. Besides, I'd crammed in a lot, since I knew it might be shortened. In the larger context, my old dreams had grown useless. I no longer had the passion that helped give me the strength to fight AIDS. My work started becoming a prison camp. I remained locked in by a healthcare plan. The money satisfied me less even though the pile grew bigger. Besides, feeding the money machine that dispenses health care surely would eat up my small fortune in one prolonged sickness.

In my recovery from multiple addictions and from a sickness with a stigma, I have come to realize this battle is about getting my voice back. Recently, I realized that entire pages of my history had been wiped out of my mind. I'd moved to distant lands twice -- neither time ever going or looking back. I called upon the memory of my mom because I could not remember events of my childhood. Luckily, she's available to refresh me on all the good memories as well as being here to help heal old wounds.

I am also fortunate for a relationship contained within the four walls of my therapist's office. Even there I'm reminded of still more personal history. Months after moving here, a roommate-slash-friend leapt from making unwanted sexual advances to unwanted sexual violations. A keen therapist saw a great opportunity for me to break through. His behavior brought back forgotten and buried events of my childhood. For the first time I began to realize why for so long I'd seen myself as a dirty, defenseless boy who was not good enough. Somehow I'd gone from a defenseless boy to being a teen-age monster. I fed the monster the most by age 22. I could no longer go outside of work to be in public. I was the silent boy who fought off a sexual offender who shaped my mind, and my life, before I knew what sex was.

I knew something changed in my life all those years ago. For 20-plus years I had not even told my mom. Now, through the eyes of an adult, I was seeing why. Now I was seeing through the eyes of recovery just how much those old events were still shaping my behavior. How was it that I managed to live beyond high school when all I had wanted was just to die? How was it that I got to the point where I couldn't leave my house for the fear that I hurt people if they had to look at me? How was it that I needed to be physically hurt in order to enjoy sex? In trauma and in pain I buried the past as I moved on but they had never lost their effect on me. Like so many times before I reviewed the mental map that had directed my path. I wound up disconnected and blank.

"Silence = Death" was the buzzword of the movement of demand action from political leaders of the growing AIDS epidemic in the 1980s. The same motto became known as a plea for social acceptance for persons with AIDS in communities as well. For too many years -- and even now -- the silence has been all too real. The silent unknown status of an HIV antibody test not taken. The silence that had filled the void moments prior to sex with a high-risk individual. Silence from fear and shame that progressed my disease. In silence, failing to show up for doctor appointments because the too-few doctors treating AIDS were also treating friends and co-workers for all types of normal sickness. In silence, I missed medicines because I could not bring myself to leave the house with a pocket (or suitcase) full of medicine for a day or a weekend. For too many reasons, I felt that my silence enabled me to keep living. I remained in a constant state of paranoia praying that my status would not be revealed. The silence prevented opportunities to extend my life or get help. But, I also felt the silence was helping me to live.

Three years ago I chose to leave my career to better the chances that I could turn my life around. I have lived publicly with my condition ever since. Luckily, I gave up the terror of having to remain silent and gained the support of family and friends. Later, after gaining sobriety, I found myself in training to become a youth HIV prevention speaker. Here I learned to give a final burial to the monster I dragged into every mirror.

Within the mecca of AIDS Project Los Angeles was a deep sense of acceptance and healing. With additional help, the monster I fed through adolescence, the one that kept me out of public view in my 20s, has not appeared in the three years since attending my first youth HIV prevention workshop. Recently, my public speaking to youth at risk has taken off, and last month I paused an extra couple of seconds before 400 students sitting in silence. Their silence continued until we got to the end of the talk about my life with AIDS, the part that not too many people get to very often, where we talk about dreams and setting goals, and feeling good about yourself. I tell them, "I want each of you to see a great person when you look in the mirror," and then for a couple of moments I go into how, without knowing them, I can see all this greatness. This is what getting my voice back is all about.

I have attended many youth training workshops since beginning this mission. I have learned from many diverse presentations and panelists representing nearly every ethnic origin, religion, or sexual orientation. It strikes me ironic that one common occurrence holds true to all the various groups. "It is not OK to talk about sex in my home." There is something wrong when we advertise that condoms are 99-percent effective but withhold the specific usage information which would allow them to reach this level of safety. If you have listened to teen music, watched broadcast television, or its advertisements, the predominate theme is that life is about sexuality and having sex. The importance of having sex or at least being sexy is our common culture yet we stop short of giving our youth any honest communication on the subject.

The rapid spread of HIV is more than just the absence of information. As I left home at age 21 my mom was extremely concerned about the headlines of the times and approached things differently. Bringing up the subject of sex my mother begged me to use condoms. I said I would be careful but secretly I had a plan to end my painful life. Ending things seemed a realistic alternative to the painful life that I couldn't imagine getting any better. Now I wonder why? Why with the building on fire do we wait so long to call the fire department?

At the conclusion of the APLA workshop each participant was presented a plain white coffee mug labeled "Hero," the opposite of anything I had ever felt before. I still use it today. It reminds me of the struggle I have come through and the personal victory I have gained. I have never felt the need to question this title. In life, where things are both tough and wonderful, there is something wrong when we can not get out a message that ordinary people should consider themselves as heroes. I believe our lives are shaped mostly by TV and other influences that teach the greatness of anything but us. People believe that greatness is achieved through status, a product, or by being someone else. We need to remember the opposite of this and it has become my job to help turn this around.

The transition from wanting AIDS to wanting life was not easy. It sounds trite to say AIDS taught me to enjoy life, but in some regards it is true. I allow less emotional garbage to pollute my mind. I need fewer toys and worldly trinkets. I enjoy nice things, but coordinating linens, designer neckties and matching letterhead give me less enjoyment than ever I imagined. I am fearful of less as I get more pride regarding who I am just being the way I am. In between the daunting tasks of managing AIDS there are great joys to be had, though, it may not be what others celebrate.

On the only path I have ever known, with lots of help, and with lots of hope, AIDS = LIFE!


This article has been reprinted at The Body with the permission of AIDS Project Los Angeles (APLA).


  
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This article was provided by AIDS Project Los Angeles. It is a part of the publication Positive Living.
 
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