Reflections of Christmas Past
(Excerpt from The Emerging Survivors)
For as long as I can remember, the Christmas Season has always been my favorite time of year. I guess this comes as a result of my childhood. Living in a home filled with dysfunction, my younger brother, sister and I would decorate our apartment with homemade ornaments and decorations on sale from the previous season purchased at Eckerd Drugs. My grandparents would come from Kentucky and Florida to be with my family and I would feel safe, even with all the secrets. During this time of year there was a sense of family that would pass as quickly as Santa's arrival.
The holiday season has always been a time when I was able to express my creativity. In my young adult life, I worked my way through college planning seasonal display and promotional packages for major shopping centers and developers such as The Rouse Company and Cadillac Fairview. My wife and I would travel across the country performing our puppetry for thousands of holiday shoppers. With every Christmas season, I was reminded of the best humanity has to offer. This awareness would carry me through the following year as I continued to mature and realized that human beings are not always kind to one another.
My first Christmas living with HIV/AIDS was 1987. There was no shopping center to decorate, no bookings for my puppetry and my wife was estranged. My parents forbade me to come home because my sister was there with her newborn baby boy and they were afraid that I would give them all AIDS. I stayed away because of their ignorance and fear. This first Christmas would become a part of my foundation for living with this disease.
I was five months clean and sober, and living in a 300-square-foot garage apartment that my boyfriend referred to as "The Dump." I was working as a bartender at CNN Center, working part time as a light technician and DJ for a 50s and 60s rock and roll band, and attending Clean and Serene meetings at the GALANO clubhouse, while choosing not to disclose my HIV status. Just as in my childhood, once again I was keeping secrets during the holidays. But it was Christmas and I had always found comfort in the season, and this year was no exception.
Cleve and I decorated our humble apartment which we eventually and affectionately referred to as the "tree house", with live pine garland, lights, candles and a few ornaments. There was no tree that year, but we had stockings for our two cats. On Christmas Eve, we went to a friend's open house and later to a midnight meeting at the GALANO clubhouse. On Christmas morning, I awoke and did not feel diseased; instead I felt empowered, because even though my life was changing as rapidly as the sun would rise, I was learning how to embrace the moments that make life so rich. Little did I know how important this would be for me in preparation for Christmas in 1997.
The summer of '97, my health declined rapidly. In September my nurse practitioner told me my body was failing and there was nothing more they could do. She suggested I put things in order because I probably would not make it to Christmas. Christmas became my goal. I continued to do research, stopped my anti-retroviral medications and treated my many symptoms within the realm of my resources. Everything was a challenge, especially trying to access the treatments that I believed would prolong my life. My life partner Cleve took over our business, worked full time at Emory University, and took care of me.
In October, I became completely homebound, no longer able to drive myself to daily doctor's appointments. Emaciated, weak and tired, I had a port surgically placed in my chest so that I could receive twelve-hours-a-day intravenous feedings of TPN that provided my body life sustaining nutrients for the next several months. Physically, I had become incapable of doing almost all of the things that brought joy into my life and for the most part, I kept my spirits up and reassured my friends and family that I would get better. As the holidays approached I was barely able to maintain my poor health and was no longer capable of hiding it because the devastation of HIV disease on my body had become so apparent.
Shortly after Thanksgiving, Cleve and I would purchase a Frazier Fur Christmas tree for our home -- this had become a yearly tradition. I wanted a small tree this year because I knew I didn't have the strength to decorate a large one. During the course of the next five days, I would spend every bit of excess energy placing lights and ornaments on this five-foot tree. This physical example was my belief that I would make it to Christmas. My body was still deteriorating and I was carrying this secret. The holidays were filled with many miracles, yet three of my friends, also long term survivors, died within weeks of Christmas.
Christmas morning was bitter sweet; I awoke amazed that I had made it and turned to see my sleeping partner and realized that he had, too. The past year was the most difficult the two of us had shared. I rolled out of bed and unhooked the infusion tubing connected to the port in my chest. I then flushed my port with saline and Heparine. While doing so. I once again felt self empowered. I went downstairs to the kitchen, took my medications and put on a pot of cinnamon flavored coffee. I went into the living room, turned on the Christmas tree lights, and meditated while waiting for the coffee to brew. For the first time in all of the years I had lived with HIV, I questioned whether or not I would see another Christmas season.
This article was provided by AIDS Survival Project. It is a part of the publication Survival News.