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While We Wait for an HIV Cure, Don't Forget to Live

February 3, 2017

It was once said that there have always been survivors of cancer, HIV and other potentially life-threatening conditions. So, as HIV/AIDS is what I personally live with, should I and others look beyond our situation and consider the possibility of a life without it?

With recent reports touting a "cure" for HIV, I remembered a conversation I had with my now deceased friend, Debbie Runions, who passed away on October 16, 2005. She was a resident of Nashville who served on the Presidential Advisory Council on HIV/AIDS from 1995-1999 and spoke at the 1996 Democratic National Convention.

Nearly twenty years ago, Debbie and I spoke at several HIV/AIDS awareness events. We had both grown up in rural areas of Tennessee and had tested positive for HIV around the same time. We also both had our spleens removed due to a condition called Idiopathic Thrombocytopenic Purpura (ITP), a blood disorder characterized by an abnormal decrease in the number of platelets in the blood. Platelets are the cells in the blood that help stop bleeding. A decrease in platelets can result in easy bruising, bleeding gums and internal bleeding. We pondered how our lives might be, should we live to see a true cure for HIV/AIDS.

We tried to imagine ourselves no longer living with the condition that we had been told would end our lives prematurely. We had both watched people we knew get sicker and eventually die. So, why would we be any different? Had we lived through a period in the AIDS epidemic that would allow us to become survivors? And, with a cure, how or could we go back to our pre-diagnosis lives? At the time (1997), both she and I had been living with HIV/AIDS for a number of years, and we were seeing the tide turn as protease inhibitors literally brought back so many back from the brink.

So, what if a cure were to be? We had spent a great deal of time preparing ourselves for our deaths. I, like so many others, had gone through the grieving process of shock, denial, anger, bargaining and finally acceptance of what would happen; I/we would somehow have to reverse that process. To allow ourselves even to think that a cure might be possible, we would have to figure out how our lives might return to a more normal place. I had already gone into the only funeral home in my hometown in 1993 to "get my affairs in order" by picking out a casket and prearranging funeral services, which I felt would spare my family the difficult task of doing it later. I paid for it in full by selling my life insurance policy. I also purchased a headstone that has now stood in the little country cemetery for more than 20 years.

It seems we spent so much time preparing for death that we forgot to live. However, with the prognosis given then, what else was there, except to wait for it to happen. Debbie jokingly talked about having to buy another car because she had driven hers to the point of no return, imagining she would never have to think about it.

I know I am not alone, as there are a large number of long-termers who never expected to live as long as we have. We learned to survive on limited incomes, as many of us left the workforce to live out our final days, only to be still alive so many years later. We had to become good at budgeting, and I at least have felt "stuck" between keeping the benefits I currently receive and returning to employment with the risk of losing what has kept me alive this long.

As noted, Debbie passed away some eleven years ago, and as I attended her memorial service, I was sad and reflective, thinking back on our lively conversation. Knowing that she did not live to see a cure, I allowed myself to drift back into the frame of mind that I, too, would also likely never live to see a cure. Still, here I am, alive and reaping the benefits of newer, less toxic drugs to combat the virus still in my body as we inch closer to a cure. If by chance scientists are able to come up with a cure, even if it's a functional one, I will have been given the gift of time. And, for now, I will take that and be grateful.

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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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