An Enlightened Journey: How I Lived With AIDS for Thirty Years

By John Paul

John was diagnosed with full-blown AIDS after discovering he had Kaposi sarcoma a cancer related to AIDS. At the time very little was known about the disease and no tests or treatment for HIV had yet been developed. As this diagnosis was considered a death sentence doctors gave him one year to live. Convinced this would be his fate, at the age of thirty-four, he prepared to die. That was until he decided to face death head-on and he began to fight. He fought and won and today, thirty years later, he lives a good life, one of quality. He wanted to write his memoir as a way to inspire others who might also be faced with a life-threatening illness to fight their disease by becoming proactive in their healing process. Above all: He would like to offer hope.

• Language: English
• Publisher: BookBaby
• Release date: Sep 30, 2014
• ISBN: 9781483539881

Book preview

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MY NAME IS JOHN

My name is John and I am a person with AIDS. On August24, 1984, I was diagnosed with Kaposi sarcoma, a cancer related to AIDS, acquired immunodeficiency syndrome. Doctors gave me one year to live. I had just turned thirty-four.

Those were my words as I began to tell my story as a long-term survivor of AIDS while serving on a panel of twelve people also afflicted.

We were speaking to the Sixth International AIDS Conference convened at the Moscone Center in San Francisco, California, on, June 16, 1990. I was forty-years-old and had been living with AIDS for six years. As I sat on the stage facing more than 1,000 people, I remember feeling more vulnerable than I had ever felt before in my life. I might as well have been sitting there completely naked. Not knowing how the audience would react to what I was about to say, I took a deep breath and began to tell my story in front of a huge audience of total strangers. But before I tell you how I ended up on this stage with a panel of men and women about to bare their souls to God and the world, I want to go back in time and tell you more about my life before AIDS.

MY EARLY DAYS

I grew up in the lush green countryside of Pennsylvania, hours away from any city. My childhood was a simple existence with few material things, but rich with love.

My parents owned a home on a quiet road where an occasional car driving by provided the only excitement. Two other families’ homes occupied our road. Five minutes was all the time required to walk to either of these houses to visit our neighbors. We were surrounded on all sides with hundreds and hundreds of acres of farmland. The occasional farm house, barn, and silo perched in the center of each vast parcel of land.

In early spring, farmers on tractors diligently worked their fields, plowing and planting corn, wheat, and soy beans. By the time summer rolled around, endless rows of corn grew sky high, and my three brothers and I—and often neighborhood children—would play for hours, hiding among the stalks in the fields. My four sisters were generally in the house helping our mother with the housework and preparing meals. All of us boys would help our father maintain and repair the house, mow and care for the lawn, and weed the flower beds and vegetable gardens my father planted every year.

The closest grocery store was three miles away, and all of us siblings, as well as the neighbors’ children, would take the school bus each morning to school during the fall, winter, and spring months. The school was approximately five miles away from home, and it, too, was surrounded by farms. I can remember sitting in my math and English classes where it wasn’t uncommon to glance through the windows to see cows grazing just a few feet away behind a barbed wire fence. If we missed the bus, we had to walk to school. In those days, walking or hitchhiking along the roadside was never thought to be dangerous. We weren’t the Waltons, but ours was a rural lifestyle.

By the time I was in high school, I had developed a strong love for the arts. I auditioned for a few plays, but I never got any parts because I really had very little talent. Instead of focusing on drama, I decided to take art classes and try my hand at painting landscapes using water colors. I figured since I saw so much scenery and landscapes around me, my interpretations of them should shine through on my watercolor paper. Over time, I got fairly good at painting—not great but good enough for the art teacher to give me a grade that allowed me to continue taking art classes.

Auditioning for plays and taking art classes allowed me to enter into a world of fantasy, to escape rural reality at least for a while. I met fellow students with the same interests and a love for art. In time, all my friends were actors, singers, dancers, musicians, or artists, and I loved knowing them. I was in awe of their talent, not only because I wished I had the talent they possessed, but because I appreciated and related to their perception of the world that surrounded them.

Looking back, I’m sure many of them were gay. That makes sense to me now since most gay people aspire to be artists on some level, but at the time I didn’t give it much thought because my aspirations were the same as theirs. I was just the good gay boy who fit comfortably into the group.

During my junior and senior years of high school, my art teacher took our class on a field trip to New York City to visit the Guggenheim Museum. These trips were my first to New York, and I was hooked immediately. I was amazed not only by the artwork, but also by the unique architecture of the Guggenheim. I loved the look and I was amazed by the feel of the city, its energy, the skyscrapers, and the restaurants. Then, my English teacher took our class to New York to see Shakespeare’s Macbeth. This time, I didn’t want to go home; I wanted to stay in New York forever! The environment promised so much of everything, and New Yorkers seemed so worldly, sophisticated, and knowledgeable. I yearned to experience a different side of life, something other than watching corn grow. I decided then and there that one day I would live in New York City.

I worked all through my high school years. My first job was as an aide in a nursing home when I worked every Friday after school and on Saturdays and Sundays. I opened a savings account and was saving with my eye on the target, New York City. Living with my family, I had no real bills to consider, so I saved as much as I could. Once I graduated from high school, I got a job working in a hospital emergency room as an orderly where I worked and saved until my move to the city.

In 1974, I was twenty-four years old and living on the Upper West Side of Manhattan, which for me was a dream come true. I loved New York and felt as though I was really connected with it. The city pulsed, and I wanted to be a part of its rhythm. I never felt more alive. I love good food, music, and great theater, and New York City has the best. I took total advantage of those aspects of that wonderful city.

I especially loved the theater. When the musical A Chorus Line was on Broadway, I purchased a ticket for a seat in the orchestra section of the theater. The night of the performance I was anxiously standing in a long line in a driving rain waiting to get into the theater when I caught sight of the figure of a short person standing right behind me, a woman dressed for the wet weather in a bright yellow slicker and matching hat. As I turned to observe the length of the line behind me, I looked down at the small yellow-clad woman, and my eyes met the eyes of that wonderful actress Ruth Gordon.

When she realized I recognized her, she smiled and said very softly, Hello. All I could think of at that moment were the movies, Rosemary’s Baby and Harold and Maude. I don’t know what possessed me to do this, but I leaned down and kissed her on the cheek and said, I think you’re great. She responded with, Oh! We’re going to see something even greater tonight.

I smiled for a second or two and then turned back around and left the actress to her privacy. Ruth Gordon was right. The show was not only great; it was magnificent. For me, witnessing A Chorus Line on the Broadway stage was almost like taking off in an airplane—what an uplifting, breath-taking experience! Ruth Gordon and the gentleman she was with, who I assumed was her husband, sat next to me in the theater. I couldn’t have asked for better company to see A Chorus Line for the first time.

It wasn’t long before I found myself addicted to this show; in fact, I would go as much as my job would permit. Talk about obsessive-compulsive disorders! I went to both matinees and evening performances. I went so many times that after a while I could walk in and ask a woman who worked at the theater and who remembered me if there was standing room available. She would say, Yes, and I would hand her a five dollar bill that she would stick in her bra. Off I would go to stand in the back of the theater to watch the show.

I’m certain the reason I was so drawn to A Chorus Line was that so many of my friends’ stories as dancers and singers paralleled the characters in this show. How hard they worked at mastering their crafts! Their love of art was not just in their blood. It was embedded in their souls and shined in their eyes. I also wanted to be part of a show, and I dreamed of the possibility of one day being on stage. I remember how deeply I could relate to and feel each one of the characters of A Chorus Line as they took their places on stage, each telling a story—the actors using their bodies as canvasses to express themselves and conveying their messages with their voices. They all possessed a common thread, a profound passion for their art that seeped from every pore of their bodies. Every person in the audience understood their hunger.

I was so addicted to the show that I would go to the theater as much as my job would permit. Working in the emergency room at one of the major hospitals in Manhattan was demanding of my time, but I still managed to see this Broadway masterpiece regularly.

Aside from my love of good food, music, and great theater, I also enjoyed the nightlife New York City had to offer. After all, I was a young gay male in his twenties with lots of energy and a healthy libido. Did I have casual sex? Yes. Back in the 1970s, I thought I had to avoid