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Train of Thought, Then and Now

December 7, 2016

Many of us, of a certain age, may recall the scene in some cartoons or movies of a woman tied to a train track with a train coming from a distance. The scene depicts the "damsel in distress" being saved, just in the nick of time, by her hero.

Some years ago, when I wrote articles for a newsletter from my perspective as one newly diagnosed with HIV, I used this analogy. In the early years of my diagnosis, I struggled to come to terms with my prognosis of five to seven years before I would succumb to AIDS. When I was asked how it felt to be living with HIV, I described it as being stuck on a train track and being able to see the train in the distance coming toward me. The inability to free myself before the train came upon me meant certain death, in that during this time there was little hope of staying alive for a number of years while HIV took it's toll on one's body.

Another description I used was how, watching the ducks and geese swimming along on a lake, on the surface it appeared that all was calm and in control. However, just below the surface of the water, the fowls were paddling like crazy to keep moving and stay afloat. This was how I was feeling before I decided to go public with my positive status. On the surface, I put on a show of control and calmness, yet on the inside or when I was alone I struggled to keep myself together for fear of being found out -- and with the expectation that my immune system would fail me as I spiraled into sickness and death due to the virus inside me.

Over the course of twenty-five years, I have come to terms with being infected with HIV and of having progressed to an AIDS diagnosis, as my T-cell count and viral load have ebbed and flowed, rising and falling like the tides of an ocean.


The strides made in treating HIV/AIDS have allowed long-term survivors such as me to live well beyond those early prognoses. With that, however, comes the memories of those I have known who did not live to reap the benefits of new and less toxic drugs, which in turn causes some survivor's guilt, I suppose. I am grateful to still be here, but I mourn for the friends I've lost along the way. The days of impending death have been replaced by learning to live the best I know how as a person living with HIV.

We who were infected with HIV some years ago to some degree have an advantage over those who have had no "death sentence" hanging over them. HIV allowed me to see life through new eyes. It gave me the opportunity to enjoy the small things that I had taken for granted before my diagnosis. It should not have taken a virus with no known cure to make me appreciate the life I had. Unfortunately, that's how most humans are. It takes a crisis of some sort for us to see just how good we might have it and to appreciate our place in the world.

The reality of life is that, from the time we are born, with each day we are closer to the end of our lives than the day before. It is up to us as individuals to decide what to do with the time given. We can either try to do good, or we can wallow in our misery and miss out on what life has to offer. This is not to say that I do not think about what may happen to me as I near the thirty-year mark as a person living with HIV/AIDS. Being a nearly fifty-five-year-old man aging with HIV has it's own set of issues in regards to my overall health that I do not take lightly.

I was recently asked by a young man of maybe 30 years old: "How do I become you? How do I reach the place of acceptance that you have? How do I ever learn to live again?" I responded: "In time, you will be me. You will have reached that place in time where you will look back on these early days of your diagnosis and say, 'I am stronger that I ever thought I could be.'"

The experience of being a person living with HIV/AIDS is unique to everyone, even though we all start the journey the same with the initial positive test results. We all work through it in our own way and time. That is not to say it will be easy, however.

Now, instead of being tied to a train track, I am free, having used that fear and uncertainty to propel me forward, to become the conductor of my own train where I am at the controls, having learned to enjoy the scenery of life along the way.

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More Personal Accounts of Older People With HIV/AIDS

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Positive and Beyond: A Rural Perspective

Harold R. 'Scottie' Scott

Harold R. "Scottie" Scott

Harold R. "Scottie" Scott grew up on the family farm in rural Jackson County, Tennessee, which has a population of less than 10,000. On October 24, 1991, he learned he was infected with HIV via a phone call while at work. This set into motion a personal journey, which would include a very public announcement that he was living with HIV while a featured speaker at a 1994 World AIDS Day program. He has since gone on to volunteer in various capacities, representing the rural person's voice on HIV/AIDS and the issues that are sometimes unique to rural versus urban life. Among other roles, he is a speaker/educator who lives openly with his status while serving as a resource for the newly diagnosed in rural Tennessee. He currently resides some 30 miles east of Nashville, Tennessee.

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