As a young teenager, I kept a diary, writing in it many of my feelings and recording life. As one who does family genealogy as a hobby and is a history buff, I suppose keeping a diary was my way of leaving behind my own history.
In 1991 when I was 29, I learned I was infected with HIV. I was devastated, and for the first several months, it was not a good place to be. But, in the midst of my sadness, anger, depression and a whole range of other emotions, I again began to journal my thoughts. I had been told that I had maybe five to seven years before I would succumb to AIDS. It was due to this that I felt the need to record my journey in my own words. I am now sharing some of my journal entries to allow a glimpse into my struggle to come to terms with the news I had received.
October 24, 1991: Today is the worst day of my life, next to the suicide of my 19-year-old brother in 1979, when I was just a 17 year old. I got a phone call from the oncologist who had performed an HIV test a week before, after I had visited him in Nashville, to determine whether I might have leukemia. It was not leukemia but far worse. First off, I cannot believe that I would be given such news via a phone call with the words: "Your HIV test is positive, you have five, maybe seven years to live, and I suggest you find a doctor who will treat you."
December 24, 1991: What a Christmas gift!! I began taking AZT [Retrovir, zidovudine] as it is the only option. I hear that AZT itself is worse than the HIV, but in order to fight, I am willing to take the chance that it might help.
July 29, 1993: Today, I left the job that I have had for a number of years, having yet to let any of my co-workers know that I am living with HIV. With the advice of my doctor, I made the choice to leave my job, as I was under so much stress with keeping my secret and waiting to die. I broke down and cried during my exit interview and swore the HR person to keep my secret.
October 4, 1993: Today, I made the trip to Nashville from my home 85 miles away for a routine check up in regards to my HIV. Labs were done. People at all stages of the illness streamed in and out of the health clinic. I struggled to maintain my composure, as the mental aspect of my illness makes me feel as though I may go crazy. Life out here in the rural area in which I live is a far cry from what I imagine life might be in a much larger city. My T-cell count is at 179. How will I ever survive??
Over a period of some two years, I maintained a steady T-cell count and was more involved in the "Circle of Friends" support group. It was there that I felt the safest, more in control. It was there, however, that I saw HIV/AIDS clearly at all its stages.
July 13, 1994: Tonight, my closest friend from the support group has died. Who will be my hero now?
September 25, 1994: I am sitting here crying, and I don't know why. I feel so alone and as if I do not belong. Why do I feel like I'm fighting a loosing battle. I don't want to be sick, I do not want to die.
October 9, 1994: Tonight I got a phone call from a former co-worker and friend who called to ask if the rumors she had been hearing about me were true. Could I meet her and to talk, she asked? In that we are such good friends, I found myself telling her that, yes, I had HIV, but no one else could know. Only I could let others know, on my own terms.
December 1, 1994: World AIDS Day. Today, I did something I never thought I could. I stood before an audience of about 100 people. I was scared to death. I made an announcement that I am living with HIV and have been for a number of years now. The weight of the world has lifted. Maybe now I can have a more normal life.
From here, I began my new role as a public face of AIDS. How had I ever made it to this point? Looking back over the years since my initial diagnosis, I had found strengths that I never knew I had, or perhaps they were there all along, and I had just never tapped into them. It seems I had found my voice. I became the voice for all of us who were living in the rural areas. At times it's as if I am outside my own body, watching the life of someone other than myself. I had always been a follower, staying in the background and not seeking the spotlight. HIV/AIDS changed me, not just in appearance, but in courage.
As the years have passed and as I have gone from one treatment to another to keep HIV at bay, I have come to be known as the brave one -- although some called me the crazy one -- to splash my story of living with HIV across the front page of the local newspaper. I'm not sure who has benefitted more, me or the others who have looked to me for answers after getting a positive diagnosis. I have had newly diagnosed say: "How do I become you? I want to be able to live openly with my status." My response is, "Someday you will be me; I have had many years to settle into my new skin." All the fear, the anger, the depression, the self-loathing played a part in getting me to where I am today. I look back on those early entries in my journal, and I see how far I have come from what I felt was a hopeless situation.
I still miss my HIV heroes who did not get to come along with me on this journey, but it is due in part to those who propelled me forward that I followed my quest to make a difference in people's lives and to allow my community to see that I would no longer hide for fear of retaliation. Stigma still exists. It is a constant, but I stand strong and try to combat it as best I can.
Thank goodness, I had the "sense" to record my thoughts and experiences in a journal and scrapbook that, now well into 25-plus years, have become teaching tools allowing others to have a sense of what life with HIV/AIDS used to be.
The journal entries were lightly edited for clarity.
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