HIV: A Personal Story

FOR MANY, BEING DIAGNOSED WITH HIV/AIDS is a life ending sentence. And for others it is a life changing event. For me, like many others, it took some time to deal with and come to terms with and still was difficult to share with others. I have had my times of ups and downs, along with the good and the bad associated with this disease.

I spent 2 years living with it in denial before I could even share it with my family for fear of how they would react. Would I be shunned from the family and treated as an outsider? Would I be dirtiest of people who deserved what I got, because I am gay? I did not know the answer to those questions at the time. I finally decided to share the information with certain members of my family that not only was I gay, but that I was HIV-Positive as well.

At that time I told only the family members who were an actual part of my life. This included my parents, my younger brother and sister and an older brother. My older brother was already aware of this information, as he was told while in a therapy session, since I felt that I needed that extra protection from him, as a result of what I know now to be a childhood traumatic experience. As a young child, I was forced to share a bedroom with only one bed in it with my younger brother and him (one of my older brothers). My older brother had gotten the idea that one night we needed to play a game of "Name the Body Parts", and I was told what to do and how to do it. He was at least 10 years my senior, and even though I knew I was gay already and welcomed the "game", it was still abuse. During the course of playing this game on a regular basis, he told me that "You had better not tell anyone and better not turn out to be gay, or I will kill you." I did not know how to deal with those words and never told anyone, until I was in that therapy session. Once I had told him, I was informed that this was my entire fault and that I was the one who initiated all of this and everything that I said about him was a lie and he was not going to accept any part of this whole ordeal, because he did nothing of the sort. I never told anyone else about all of this until I was an adult, and I never told any other family member or addressed him again about it.

How did I get infected; you ask? Well as it would turn out despite my years as a professional and teaching others how to protect themselves, I thought I was invincible and could not get infected, especially since I had not been infected yet. After all, I was participating in activities, going to places that promoted unsafe sex, and was a promiscuous as they come, and was still negative. As it would turn out, I was dating this person, who was in the military, who was never diagnosed with HIV, and found out one day that he was positive. I started to feel things different in my body and decided it was time for me to get tested. I was positive. August 6, 1992, my primary care doctor at the time looked at me and stated, "You came into my office and put me and my entire staff at risk, and you knew you were infected. You need to leave my office and never return." I asked for a copy of my lab results and was told "No, you need to leave now." I did get a copy of my results, but only after protest, later that same day.

It has not been easy since that time. In 2007, I was given the diagnosis of AIDS with a T-Cell count of 56 and was still healthy and working as a professional in the field of corrections. I had no reason to quit working or make other changes, since I was still self-sufficient and moved to Tallahassee, FL for a new job and the opportunity to make a new start for myself. I welcomed the change. I have worked in the field, taken medications, gone through periods of adherence, non-adherence, "self-medicating", continued participation in activities of unsafe sex, unsafe environments, and denial or refusal of my status. Much of this was a direct result of my untreated mental illness and disregard for the appreciation for life.

It was not until my exposure and long battle with shingles, losing my job, neglecting my own health, and getting a T-Cell count of 15, that I started to finally realize that my life was worth something. I had to do something to recharge my life, get out of the depressed state I was in and make something count. I went to Apalachee Mental Health Center, was diagnosed Bi-Polar and placed on meds, chose to begin filing for my disability, and resumed my HIV medications; started being pro-active and my own best advocate. I felt completely self-empowered and ready, capable and willing to do whatever I had to do to survive, enjoy life, and live (more than just being alive).

I have since been able to obtain my disability benefits on the first try, I have learned how to be active in my treatment plans, my health decisions and live a much better quality of life. I am getting so many issues addressed and resolved; I am better at documenting my experiences, my needs, communicating my wants, needs and desires. I have moved from being all about the physical to being able to focus on the development of a person.

I have been able to become more accepting of myself and less concerned with what others think. I have spent much of my time being trained in areas of helping others file for their disability benefits, becoming more involved in NAMI, specifically NAMI Wakulla, running support groups, educating others and seeking opportunities such as being a the client representative on the Board of Directors for Big Bend Cares.

Today, I am an advocate, a representative, a navigator, a student. Everything I do, I do to help build myself above the negatives, such as pain, anger, resentment, frustration, mental illness and most of all above the letters of hiv and aids. I choose not to make them capital letters in my life because I have positioned myself not to focus on my struggles, but rather on my achievements. Today I am a lighthouse for others to see. I allow myself to be seen as a navigator, advocating for a future of life, a representative of recovery, and a student of new experiences. Only by doing those things am I able to help others, help myself, and be happy.