aidsoversixty

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Megan Trotter, TN Herald-Citizen: Region’s first AIDS victim still going strong at nearly 50

Region’s first AIDS victim still going strong at nearly 50
by Megan Trotter, October 2, 2011

 

chers—

it’s so easy, in wanting to be visible and give back, to let ourselves be seen as victims.

—rk

GAINESBORO[, TN] — Harold R. Scott of Lebanon, formerly of Gainesboro, made headlines in the Herald-Citizen in December 1994 for being the first person in the Upper Cumberland region to go public with the admission that he was HIV positive. He spoke at an awareness seminar at Cookeville Regional Medical Center in order to reach out to other people with the disease and give them encouragement that they were not alone.

“I never thought 20 years ago, at almost 30 years of age, I would live to see 50, but it’s in sight,” Scott said.

It was in the fall of 1991 that Scott first noticed patches of mysterious tiny spots appearing and then fading on his arms and legs that looked like some kind of blood blisters. When he checked a medical book for possible causes, he found a condition listed with photos that matched his spots: Idiopathic Thrombocytopenic Purpura (ITP).

According to the book, it was “a condition where blood platelets are abnormally low, causing tiny bruises to appear. It’s cause is somewhat uncertain, but could be an indication of leukemia, lupus, Evans syndrome or HIV,” Scott said.

Scott went to a Cookeville walk-in clinic, where the doctor referred him to a cancer specialist, thinking he could possibly have leukemia. He scheduled an appointment for the next day at a clinic in Nashville. Results of his bloodwork indicated a low blood platelet count, and he was given the diagnosis of ITP, as Scott had first theorized. However, before he left, he took an HIV test, which would take several days to receive the results.

He was at work at Nielsen, a picture frame manufacturing plant in Gainesboro, when he finally got the phone call that would change his life.

“The doctor, who was treating me for the ITP, said without hesitation, ‘Your HIV test is positive. You have probably five, maybe seven, years to live. I suggest you find a doctor who will treat you,'” Scott said. “I spent the biggest part of that day in the bathroom crying, trying to process what I had just learned, wondering how I would ever be able to have a life again or if I even wanted a life. All I could feel was despair and complete loneliness, needing to release my fear, and the shame was almost unbearable.”

While struggling to hide his illness from the world, Scott had to have surgery to remove his spleen — an effect of the ITP on his body. He left his job to get away from the stress of keeping his condition a secret. He even waited to tell his parents about his diagnosis until six months after that first call.

It wasn’t until he met Barbara Burchett from Cookeville that he found the courage to take back his life. Now retired from the State Health Department, she was the HIV/AIDS case manager for the Upper Cumberland Region.

“(She) was first and foremost the person who started me on my path to being where I am today. She got me set up with a physician, Dr. Stephen Raffanti, who still treats me for AIDS,” Scott said. “She was very compassionate, not just to me, but all the patients who came through her office. She was a mother figure to many, and fought hard along with others in the healthcare field in the area to see that we, her clients, were given proper treatment.”

Scott also found a good friend in the now late Debbie Runions, who was on then President Bill Clinton’s U.S. AIDS Council. Scott also got involved with the support group, Circle of Friends, where he found the love and support of people going through the same situations. One of these people was a man named Steve.

“Steve had already progressed to AIDS when we met, but we formed a strong friendship, and often shared with one another our hopes and fears of the disease we had. It was with his final months of life that I began to realize I would be the one to ‘put a face’ to HIV in the rural areas of the Upper Cumberland, after he and I discussed during his final days the need for someone like ourselves to stand up, and to let people know HIV/AIDS was very real, and that the disease needed to be brought out into the open,” Scott said.

Scott agreed to be the featured speaker for CRMC’s World Aids Day, where he shared his life experiences and hoped to reach others suffering from the disease. People responded in a variety of ways to Scott’s admission of his condition — some with love and compassion, some with hatred and desertion.

“The views of people regarding HIV/AIDS, has changed some, but overall, not a lot, I feel. I have always said if people can ever get past the way those of us were infected, be it through unprotected sex, etc., then they can better deal with the disease itself,” Scott said. “Dealing with HIV/AIDS, for the general population, and accepting those of us who are infected, takes a lot of ‘looking inward’ of themselves and of learning and knowing real compassion and love for their fellow man.

“I still have hope for a cure, maybe not in my lifetime, but still, I hope,” he added. “My thanks go out to all the people mentioned, and to those who were not. It has been quite a journey. And through it all, there are those who love me, those I love in return. And, the difference I hopefully continue to make, will have given hope to others in dealing with HIV/AIDS, or other life-threatening diseases. By sharing myself and my story, the journey will go on long after I’m gone.”

Scott can be reached at scottfree1@hotmail.com.

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