On December 1, 2018, our editor asked our readers on Facebook what World AIDS Day means to them. One reader, Harold Scott, gave a profoundly personal reply. With his permission, we have reprinted his post as a letter to the editor:
World AIDS Day is here. Saturday, December 1, 2018 – a day that, for me, marks twenty-fours years since I stepped beyond the fear, and out of my comfort zone, to reveal to the world that I was living with HIV. In fact, I had been doing so [living with HIVE] for some five years prior to my announcement. I was then thirty-two years old.
Those who have followed my story thus far know I am about to enter my thirtieth year as a survivor of a disease that, by all accounts, should likely have taken my life many years ago, had it not been for some well trained researchers, doctors and scientists, who figured out how to develop drugs to treat the virus, and the knowledge to use those drugs to spare and prolong lives.
Being a survivor is a good thing. Being a survivor of HIV/AIDS – and to have lived my life as such in the public way I have and do – is, well, for me a great thing. I do not know the mind of a cancer survivor, but I suspect there is a sense of peace, a feeling of triumph, and a greater sense of awareness of the things previously taken for granted.
As a survivor of AIDS, those feelings are the same. Yet, for me at least, there is another layer to it all. HIV/AIDS, and all the issues surrounding it, is still seen as a white, gay man’s disease, no matter what progress we have made in that regard.
World AIDS Day was established in 1988, as a way to remember the many who had died from the complications of the disease, to raise awareness, and to honor those who continue to live.
The early days of the epidemic, living with the hope that AZT, the only treatment available at the time, would allow me just a little more time, were some tough times. As the deaths of so many I knew at the time came often, I could not help but wonder if I would be next. There was little hope, but hope is all I had, for the most part.
Thinking about a future was short term. A sunrise, a snowflake, a rainbow – they all became more beautiful, more appreciated. A sense of urgency however, was a part of life with HIV. As the clock ticked away the time, I tried to take in all the things my death would leave undone.
Living with, and now aging with ,HIV/AIDS brings challenges still. It brings along with it memories of those gone, and sometimes the survivor’s guilt I feel for having been allowed to live, while so many others were taken. Learning to “place things”, not sweating the small stuff, or get too caught up in the drama of life, are some of the things living with HIV has taught me, that perhaps I would not have learned otherwise.
I have learned a lot about myself throughout this journey – including that it is alright to just be. To be me. To speak my thoughts, whether others agree, disagree, or frankly don’t care. It has brought about an honesty, a sense of self worth, and the ability to let my own light shine.
I suppose it is really hard for the general population to understand HIV, and those of us infected. Maybe not. I have never questioned those around me about their real feelings about it. I guess I assume a lot. Perhaps there is more understanding than I give credit.
Changed forever by HIV, [I believe] its challenges have made me a better person. I took it, and made it real for a lot of people, when I decided to make my announcement nearly a quarter century ago. It did take courage for me to do, as it did for those who loved me, for perhaps without them, I would never have been able to become the annoying voice I have been.
I’ll be the first to admit that being heard, and using various means to educate, has probably caused many an eye to roll, as I’ve continued to keep my story from being pushed into the background. It has mattered, not just for me, but for all those who lived, and died, without being heard.
World AIDS Day gives me the opportunity to reflect, remember the lives of those who walked the journey ahead of me, and to look forward. Knowing, and realizing, that I, and all of you reading this, are but a tiny speck in the bigger, overall picture of life. The lives we touch along the way, hopefully in a good way, will be one of the things others will remember about us when we are gone.
I recently came across something I had written down shortly after I learned I was infected with HIV. It simply said: I just have to have hope…..one can only hope………
HRS 12/01/2018 #Survivor
FOR MORE: Also on World AIDS Day 2018 in Nashville, and through mid-December, the classic play about family and the response to HIV, Lips Together, Teeth Apart, is being staged in Nashville.
ALSO: Nashville leaders unveiled a plan to combat HIV/AIDS epidemic in the region. Read more about the plan, see the full plan draft, and share your comments.