I have been HIV-positive since at least 1986. By this point in my life, I have encountered lots of bad news regarding my health, a fair amount of opportunistic infections, and my worst health challenge, a condition called “Inclusion Body Myositis”. This condition has diminished my mobility.
It all started 13 years ago, when I tried to do a regular exercise in the gym and I wasn’t capable of finishing it. That day, I had a feeling something was wrong.
In the beginning, we thought it was HIV-related. After several biopsies, changing of meds and multiple tests, we realized this rare auto immune condition had nothing to do with HIV.
The mechanism of I.B.M. causes the disintegration of your muscular system. It was early in my condition that I figured out this illness was going to change my lifestyle significantly. ”, I realized my mobility was going to eventually put me in a wheelchair. These days I am wheelchair bound.
Multiple fears surfaced. My independence was threatened. My ability to socialize with friends was going to be diminished, and the slow deterioration of my body was starting to cause depression.
For years I had defined myself by my looks. The mere thought of losing them filled my mind with an overwhelming sadness.
All of a sudden, I faced a period of depression that lasted several years. I was in bed most of the time, sleeping most of the day, and feeling sorry for myself. This was a very different reaction to life from the way I have handled my HIV for all the years before I.B.M. struck me.
The simple things in life were not interesting to me anymore. I lost most of my friends. I found it almost impossible to imagine that I would ever again enjoy my regular outings with them. I also encountered the fear of having to redefine myself, to find the meaning in a life that this illness had clouded.
Fear became as crippling as my physical deterioration. I found myself unmotivated to do the simplest tasks that were part of my daily routine. That day I realized I was battling a huge enemy, a big upcoming battle with a feeling that was taking over my life. I decided to analyze the ramifications of fear in my present and the wasting of a life that still was having beautiful things in store for it.
Fear took over every aspect of my days and nights.
It was time to confront this issue. I was wasting my life drowning myself in “what ifs “ and negative projections that eventually were going to overpower my will to live.
I found out that fear is one of our worst enemies. Decisions based on fear are always clouded with the uncertainty and the incapability of not being able to consider the truth as a liberating tool. What you fear, you can’t love, and what you love shouldn’t be feared. I had to find a way to love myself again.
Fear is the crippling tool of brainwashing, indoctrination and negativity. I was filling my life with a negativity that was going to take me nowhere.
Fear can cast you into the deep end of the pool and drown you in despair as it robs you of self-confidence. That wasn’t going to be me.
It is also the biggest asset of those who want to control your life. This illness was not going to redefine me. I refused to believe this was the end of my road.
Fear can be the result of guilt that will eventually stop the natural flow of happiness. I needed to find happiness again.
No matter what, nothing is eternal, including the pain that at times obscures your present. Every day lived in fear is a wasted present that infects your future with the darkness of despair.
Fear is a lie that we choose to embrace or conquer.
Today, I have redefined myself. I have accepted my journey and found meaning in life again. My present is bright. My days are clear and my nights are restful. I conquered one of the biggest enemies I had ever met. I managed to do it. I redefined my life with the positivity that is going to give me the tool to never again feel afraid of living.
About the writer: My name is Felix Garmendia. I was born in Ponce, Puerto Rico in 1961. Moved to New York City in 1988 and tested positive for HIV in 1989. I live with my husband Denis Beale in Manhattan. I taught art in the N.Y.C public school system for fifteen years until a disability forced me to retire in 2005.