~ And Then, The Sun Came Up……. By Harold "Scottie" Scott 09/06/2013
And Then, The Sun Came Up….. the working title of my book, that I've been writing for over twenty years now. Talk about writer's block!!
The idea for the book began with my initial diagnosis with HIV, in that the first several days, after learning I was infected, were, for me, some very dark days, and a time in my life, when it was quite a chore to even want to see the next day. And then, the sun came up.
Growing up in rural middle Tennessee, on a farm, where life was simpler, and work was hard, the days began early, sometimes before the sun actually came up. It was these times however, that the world around me seemed its most peaceful. This was before my HIV diagnosis, and a five to seven year prognosis, by the doctor who gave me the life changing news that I had cointracted HIV. As noted, early in my diagnosis, I had a hard time of coming to terms with my impending mortality, in that really all I knew about HIV/AIDS, was what I had read, or heard about, that was happening in some other part of the country, far from the sheltered life I knew on the farm. It was images of hospitalized, sick and dying people, often alone, so, that was the image I had for myself, especially when I was alone, these images took over my mind. I tried to present a calm picture of myself, when I was with others, but, on the inside, I was completely out of control, in trying to find my way forward. Thoughts of suicide crossed my mind. I tried to figure out ways, to make it look like an accident, and not suicide, so, that I would not add more shame to my family, for I felt I had let them down, not to mention myself, by allowing myself to become infected with HIV.
Somehow, I made it through those first days, and weeks (remember, this was 1991). The dark, and trying times finally gave way, to better, and brighter days. I was beginning to realize, I was not alone in my journey. Day after day, I grew a bit stronger. With each new sunrise, and taking it one moment at a time, instead of painting a grim and final picture, of how my life might be, I was seeing again, how it could be. And then, the sun came up.
I have journaled my HIV/AIDS journey, for over twenty years. Even in those darkest days, I still managed to put my thoughts down on paper. It was, as I look back now, a way for me to gain control, and, after the passing of time, one day became the next, and eventually months, and now into years. It allows me to look back at those early days, and see how far I have come, to where I was then, and, the person I am today. It was through this "self therapy", that my idea for writing a book, came to be.
For many today, it may seem, I was weak back then. And you may be saying to yourself, what was the big deal? And, if I am to be honest, I can now look back on those times, and say the same thing about myself. However, it was during those early times, that there were those all around me who were so sick and dying. That was the only future I could see for myself as well. I was involved in the "Circle Of Friends" HIV/AIDS support group in late 1991, after my positive diagnosis, and, it was not uncommon, as we met every two weeks, that, we had lost someone to AIDS, between our meetings. My first meeting happened to be the night that Magic Johnson made his announcement, that he was HIV positive, for that was the topic of that particular meeting. It was in this support group, that on my first time attending, there were about 25 of us there. Myself, newly diagnosed, scared, uncertain, and then, there were others, who were nearing the end of their journey. Today, myself, and one other person, are the only two original surviving members, of the "Circle Of Friends".
Getting back to the original thought for this writing, And Then, The Sun Came Up, can have many meanings, but, for me, it means, that even though, there may be difficult times in our lives, if we can just make it through the darkness of sadness and pain, a new time, and day awaits us, so that the sun may rise to greet us, with hope, for a better way. My book, may never be published for others to read of my HIV/AIDS journey, but, it nonetheless, in its current, raw and honest form, serves as a road map of sorts, and chronicals the day to day ups, and downs, as I've learned to see life, as beautiful again. And, even in the midst of all of lifes events, or, for when I, and others are no longer here, the sun will continue to rise, and set, taking us into unknowns, while allowing time to heal, gain control, and seek peace.
And Then, The Sun Came Up…………..
About The Author Harold Ray "Scottie" Scott
I am a native Tennessean, having grown up in a small, rural area of the state, on the family farm, some 85 miles east of Nashville,in a county with a population of less than 10,000. I tested positive for HIV, on October 24, 1991, and, "went public" with my status, on World AIDS Day, 1994. It was at that time, that I became a public speaker/educator, going out into my own community, to educate others about life with HIV/AIDS, in rural America, sharing my own story of being gay, and what has become a twenty plus years journey, of living with the epidemic, that has swept our nation, and world. I have no degrees, rather, only a high school graduate, but felt I needed to be the one to put a face to HIV/AIDS, and, have been the only person to ever do so, in my area of Tennessee. I am a former factory worker, later becoming a floral designer, and I am the former Co Chair of The Upper Cumberland Regional Ryan White HIV/AIDS Education & Awareness Committee. I currently live with my same sex partner, just outside Nashville Tennessee, having left my former job, due to illness, but, still do speaking and educational programs from time to time, strictly as a volunteer, with no monetary compensation. I also volunteer in the local hospital, to occupy my "down" time, and am a resource for those newly diagnosed with HIV. I by no means claim to be a professional of any kind, or an expert writer, but, am just a regular person, who feels my own personal experience often makes a great impact on those who hear my story. E-Mail me at [email protected]
Becoming My Own Voice
A question I am often asked, when I participate in an educational program or public speaking engagement, is “Why did you feel the need to announce you have HIV/AIDS, and to become an advocate for education and awareness?”
There is no simple answer, but there are many reasons. First and foremost, I did not make my decision lightly. I thought a lot about the impact it would have on my family, and others who were close to me. Having lived my whole life in an area where most everyone knew everyone else, to announce in the early 1990s that I was infected with HIV could turn out to be a HUGE thing. I recalled the news at that time regarding Ryan White, who initially was not allowed to go to school, and all the negative things he and his family had to endure. Although the details of our stories were different, what we shared was that we both went public, and our stories made the news.
After getting the approval of my family, and following the death of a very good friend in my Circle Of Friends HIV/AIDS support group, I knew I would take the giant step. I put my face, my story, and my life on public display, to not only be a voice for myself, but also for all those who could not do it for fear of retaliation, judgment and scrutiny. Someone had to show folks in the small, rural areas that HIV/AIDS was a part of their communities. Small town families had kept secrets about the real truth behind the sickness and deaths of their sons, daughters, and other relatives living with and affected by a disease that so many of us felt was a disease of only the big cities.
Once I’d announced that I was infected with HIV, I felt relieved. The truth was very freeing for me. No more trying to hide things. No longer was I making excuses for frequent doctor visits. I think it was an eye-opening time for my small part of the world. HIV/AIDS had come home, and someone was brave enough, or as some said, "crazy enough," to put a spotlight on living with HIV/AIDS. My announcement put my personal life on display. I became the "talk of the town," but at least what was being said about me was the truth I had presented about myself.
Since I was only local that I'm aware of to be so public with my HIV positive status, I became the go-to person, not only for others living with HIV, but, in some cases, for the healthcare professionals as well. Being "out" with my diagnosis allowed others to become more open to HIV/AIDS education. I was given access to speak to teenagers in school settings, and even clergymen tried to educate themselves by letting me share my story. Then various other groups and organizations invited me to speak. That’s when I knew I had made the right decision to be the voice for so many, including myself.
I have come to understand that not everyone can, or should, be so public with their HIV status as I am, even though I feel that the more people who choose to live openly, the greater the impact. Living openly allows others to see us as real, normal, everyday people, who happen to be dealing with something that still infects and affects so many.
Living publicly with HIV/AIDS takes a certain kind of person. Honestly, before my diagnosis, I had never considered myself to be such a person. As a young child and teenager, I was shy, quiet, and voiceless. I was too afraid to speak up, and now find it amazing that I have become who I am. I guess my voice was always there, just waiting to be heard.
I hope I do not come across as arrogant, for I certainly am not. Rather, I see myself as someone who wants to make a difference, to make an impact on the lives of others. I know there have been, and probably always will be, people who will never overcome their fear and judgment of those of us who are living with HIV/AIDS. They will invariably find some fault, or express disgust with me, for being myself, and for being a voice for HIV/AIDS awareness and education. They are another reason I decided to make my announcement about my HIV status two decades ago. As the list of reasons has grown over the years, I expect other reasons to follow as I go forward. I have grown as a person for sure, and have realized strengths I never knew i had. What a journey it continues to be.
This quote by Eleanor Roosevelt has become my motto: "We gain strength, and courage, and confidence by each experience in which we really stop to look fear in the face… we must do that which we think we cannot."
Positive Poster Child, Still Going Strong Twenty Years Later
GAINESBORO — 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."
Cured, By Learning To Live
With the many recent stories about "functional" cures, for HIV/AIDS, it causes me to entertain the idea of living life without the disease I have now lived with for about twenty three years.
Some years ago, myself, and my now late friend, *Debbie Runions, who was living with HIV/AIDS, had a discussion about how our lives might have been different, had we not become infected, or, of how we would react to the news that we had been cured. Debbie and I learned we were infected about the same time, we both had our spleens removed due to a condition called ITP (Idiopathic thrombocytopenic purpura ), and, we both had "gone public" with our positive status. Debbie and I discussed how we had gone through the process of learning to live with HIV, as a part of our every day life, but, we both had thought of what it might feel like to be cured.
It of course, at that time (late 1990's), before "cured" was being thrown around in one story or another, and before Timothy Brown, so, it almost felt as if it were beyond belief, in that we both had been given a prognosis of a shortened life, due to the virus in our bodies. However, what would life be for us, if suddenly, we were cured?
I had gone through the process of anger, denial, shock, and finally acceptance, along with making plans for a prearranged funeral, plus, I had already placed a headstone for myself in the family plot.
I got all my affairs in order, so to speak. I could not allow myself to get too excited about thinking of life being AIDS free. With the somewhat new treatments at that time (Protease Inhibitors), even though I was not on that drug cocktail, personally, I knew of others, who were, and who were being brought back from the brink of death, with greatly improved health, and lives that, while not excellent, were far better than before.
I pondered with Debbie, the idea of being cured. Why had it taken HIV/AIDS, to make us see how blessed we had been? Could we go back to a "normal" life, that we knew prior to our infection? Would our relationships with family and friends be different? And, all those pills!! Having gotten used to the daily routine of taking meds, would not having to take them, cause us to figure out some other way to start and end our days? Had we spent so much time preparing to die, that we had forgotten to live? It seemed we had, to some degree. If we were cured, we would have to buy new cars, in that we had driven ours to the breaking point, for we felt, we would not live long enough to need another. There was employment, and retirement to think about. So many things to life, that we did not have to really consider, in that we were dying.
Currently, my T-cell count is at just over 600. My viral load is non detectable. Do I think there will be a "cure" for HIV/AIDS for a large portion of the population infected, anytime soon? Probably not. BUT, with that being said, I think we are closer than we were when Debbie and I entertained the idea fifteen years ago. And, the possibility is not just a fleeting thought. Rather, a greater chance, with better, and new treatment options, that keep those like myself, who have been living with HIV/AIDS, for over twenty years, alive and healthier, for even longer, to really be within grasp of a cure.
For those, like Timothy Brown, and others, who are reportedly "cured", what an exhilerating feeling it must be, albeit, a challenging feeling of returning to a "normal" life. And, for those, who are newly infected, and trying to figure the ins and outs of daily living, the treatment options are varied these days, unlike they were when I became infected way back in 1989. While the best scenario is to not become infected in the first place, in reality, that is not happening, in that I still get contacted by those much younger than myself, who have just tested positive, asking for advice on how to live with the news.
Looking back on my own journey of living with HIV, and now AIDS (My T-cells dropped below 200 at one point), I have tried to make the best of an unfortunate situation, by taking good care of myself physically, by seeing my doctor when scheduled, and taking the meds as prescribed, and, in the mean time, speaking and educating others. And, having hope, that indeed, a cure will be found in my lifetime. I deal with reality however, and understand HIV/AIDS, is a tough case to crack, and not everyone of us will live to see a cure. But, just in case we do, how awesome would that be?! Live your life as fully as you can, whether you are infected or not. Life was meant to be lived. And, if a cure is found, we'll figure out a way to live our lives after HIV/AIDS.
* Debbie passed away October 2005, at age 55
Life, Its Meant To Be Lived 09/20/2013
recently watched Valerie's Story on NBC, as it followed actress Valerie Harper and her day-to-day journey with terminal cancer. I was touched by her strength and courage to bravely face her own mortality, while shedding light on the issue of the importance of living one's life to the fullest, even in the face of overwhelming odds.
As someone who was given a diagnosis of a much shortened life, I could relate in many ways to Valerie. In previous articles, I shared that when I tested positive for HIV, the doctor told me that I had five, maybe seven years to live. Remembering that this was in the earlier days of HIV/AIDS, and that there were so many around me who were dying so quickly, I felt my time on Earth was limited, and like so many others who have been given the news that their lives will be cut short, I was forced to deal with my impending death.
For me, the early days of learning to live with HIV were filled with a range of emotions. I went through the "grieving process": denial, anger, depression, bargaining with God, and finally acceptance. Once I reached the acceptance stage, I began to see myself, my life, and the world around me in a whole new light. The process was not a quick one, and I would at times find myself going back and forth through the steps. So, it was a time of great stress, one that I felt could possibly speed up the dying process. I described it then as being stuck on a train track, seeing the train coming at me from a distance, and struggling to get off the tracks before the train hit me. On the outside, I was calm, but inside I was a total mess!
I have since moved past all that, and eventually began to share myself and my story by becoming an advocate and educational speaker on the topic of living with HIV/AIDS. Along the way I took the steps to prepare for my passing. Some time after I began to accept my fate, I decided to make the difficult choice to do a pre-arranged funeral, by visiting a local funeral home, picking out a casket and headstone, making a will, and basically getting my affairs in order. After two decades, however, the doctor's prognosis for me has become a joke of sorts. A friend from Minneapolis, who visits me in Tennessee, has taken pictures of me posing with my headstone in the cemetery, to remind me to see how far I have come since those early days, and to smile in the midst of it all.
I have come to learn to enjoy life, day by day. It should not have taken a "death sentence" to get me to this point, but, unfortunately it did. I have said that in many ways, HIV has been a blessing, in that it allowed, or even forced me to realize that life was meant to be lived, whether it lasts five years or fifty. There's an old saying, "Make every day count." I have been fortunate enough to get that chance, having long outlived my five-to-seven year life expectancy prognosis from 1991. I suppose we all like to think that we use our time here on Earth to experience life and enjoy its beauty, hoping that somehow, by our having been here, we have made a difference. Having lived with HIV/AIDS for as long as I have, even though there are still things I'd like to do and see, I feel that I have enjoyed life, and certainly feel that I make a difference, in my own small way.
While HIV/AIDS for many today seems to not be the "death sentence" it once was, since so many advances in treatment are now available, perhaps facing one's own mortality is not as much a pressing issue as it was for me. Perhaps you are wondering what my fascination with death and dying might be. I do not see it as a fascination, but as just a fact. Like many other long-term survivors of the HIV/AIDS epidemic, surrounded by so much death and dying, perhaps it affected us in a way that it has not affected others. I am reminded of a late friend, who, after living with the HIV/AIDS for ten or so years, said "Had I known I'd still be here after this many years, I would have learned to enjoy life, and not have wasted so many years."
Dying is a part of living. From the time we come into being, we begin dying. For many, living may be counted by the number of years lived, and for others, by how well the time spent living was used. As I grow into my fifties, I like to think that I've made my life count, much like Valerie Harper, who is an example of facing life head on, in spite of a grim prognosis.
You're So Vain, Or Is That Vein?? 09/08/2013
During my recent visit for my six month HIV check up, and having to have labs drawn, the lady who prepped my arm for the blood draw, was overjoyed by the "nice, big veins", saying how easy it would be to get my blood. For quite some time my veins have been very prominent, due in part to the lipoatrophy condition I have. Lipoatrophy and Lipodystrophy, is a problem with the way the body produces, uses, and stores fat. It is also called fat redistribution.
There are two types of lipodystrophy: fat loss and fat buildup. Men tend to lose fat. Women tend to build up fat.
Fat loss (lipoatrophy) occurs in certain areas of the body:
Arms and legs (veins tend to show up more)
Face (sunken cheeks, temples, or eyes)
Fat buildup (lipohypertrophy, lipoaccumulation, or hyperadiposity) is when fat accumulates in certain areas of the body:
Abdomen (central obesity)
Breasts (occurs in both men and women)
Back of neck and shoulders (sometimes called a "buffalo hump")
Fatty growths in different parts of the body (called lipomas)
Since the widespread use of antiretroviral therapy began, the numbers of HIV-positive people with lipodystrophy has increased. Today, lipodystrophy occurs in 30% to 50% of people who are infected with HIV (human immunodeficiency virus).
I guess I fall into this percentage, as I am in the process of starting daily injections of the drug called Egrifta. For the past several months, I have been noticing a change in my physical appearance, in that my little waist has become increasingly larger. I just blamed it on aging, in that I am over the 50 mark. I have had the "buffalo hump' as it is affectionately known in the HIV/AIDS world, for a number of years. It however, has appeared, disappeared, and re – appeared many times over the years. I have read about and researched lipodystrophy, to learn more about it , and its causes. At my most recent HIV check up, I discussed my concerns with my doctor, who examined me closer, and made the determination, that it is indeed lipodystrophy. The term for the prominent veins, is called "roping".
The causes of these things are believed to be due to long term HIV infection, and/or protease inhibitors used to treat HIV/AIDS. In my case, it seems likely, that its due to having been infected for so long, and even though, my T-Cell count sits at 601, along with a non detectable viral load, this is one of many side effects of HIV infection.
I have, in the past, dealt with facial wasting, and, have undergone injections in my face, with Sculptra, a cosmetic filler approved for persons with facial wasting syndrome, due to HIV/AIDS. It is a temporary "fix", as follow up treatment is usually needed as maintanence. The facial wasting, as I have learned, can be a part of the overall lipodystophy condition. With one causing sunken cheeks, temples, and/or eyes, while the other causes fat redistribution, on various parts of the body, such as the neck, abdominal area, and breast, in both men and women.
These are some of the things that I once referred to as the "look" of someone living with HIV/AIDS, when I was first diagnosed, and, it was something I was afraid would give my "secret" away. Something I had hoped would not happen to me. Call me vain, maybe? I suppose all of us would like to look as healthy, as we can, and, I am often told by others, that I do not look like someone with AIDS, but with time, age, and HIV thrown into the mix, those like myself have an added stressor, of trying to maintain our overall health and appearance. I will admit that since I went public with my positive status, it has not been such a great deal, as my body has changed, due to some of the side effects of the HIV. But, still, I will admit, I am self concious about it today, especially, when someone asks why my arms and legs are so skinny, or why my veins in my arms and legs are so visible. It just serves as a reminder the toll HIV/AIDS has taken on my body, even though clinically, I appear to be maintaining.
As for the new treatment I will be starting soon, it is hoped ,will slow down some of the wasting I am experiencing, and help with the "buffalo hump" appearance. I am told by my doctor, the Egrifta shots will, or should help to redistribute the fat that is in and around my organs, causing me to have the "belly" I've not had before. It however, is something, once started, will be an every day thing, as long as there are no side effects. And, in the event I have to stop the injections, the condition will reappear. The condition is not only physically stressing, it can cause problems with ones internal organs, in that the fat accumulates in and around them.
So, now that I have given you something to think about, with all these descriptive words, I hope those of you who read this, and are living with HIV/AIDS, do not get too bent out of shape, worrying that it may happen to you. I am writing about my own personal experience, as this is something I said I would do, when I became a Healthline contributor. I will keep you posted, as to my success, or failure with Egrifta, and in the meantime, I'll make the team in the lab very happy, when it comes to trying to find a vein.
Does This Color Look Good On Me?
Nowadays, there are diseases, causes and charities, awareness events, and a multitude of happenings, everywhere you look. And, most, if not all, have a colored ribbon, that helps others to make the connection to each particular cause. In the HIV/AIDS awareness arena, the Red ribbon, was chosen as the color to pay honor to those infected, to remember those lost to the virus, and, as a worldwide symbol of awareness.
Some years ago, when HIV/AIDS was the "current" cause, the red ribbon was usually always on display at the Oscars, and other awards shows on TV, as a show of support. Today, you are likely to see any number of ribbons, but, less and less, it seems, the red ribbon, is not as visible as it has been. Perhaps it is due in part, that HIV/AIDS is no longer the "hot" topic.
As someone living with the condition, I seem to have a collection of red ribbons, from the original "safety pin" ribbon, to more elaborate types, and everything in between. One of the two AIDS Memorial Quilt Panels, I was a part of helping design, to remember those from the area where I grew up and lived, includes a large red ribbon on it, as it is so readily recognized. Today, I still wear the red ribbon on my lapel, as I do volunteer work, in a healthcare setting. I get the occasional stare, or, a puzzled look from patients, and/or visitors, and am sometimes asked what the red ribbon stands for. During the Christmas season, someone commented, how much they loved my "Christmas spirit", referring to the red ribbon. Some have asked why I wear the AIDS ribbon, wanting to know if I understand that by wearing it, I'm supporting "those" people. Imagine their reaction, when I tell them, that I myself, am one of "those" people!
All our lives are touched in some way, by all the diseases in our world. In my case, I am directly impacted by HIV/AIDS, having lived with it since 1989. I am touched by other diseases as well. Cancer of different kinds, have taken loved ones, over the years. There is Lupus in my family, as my only sister was diagnosed with that some years ago. Multiple Sclerosis, Cerbral Palsey, and, most recently, my Dad lost his battle with Alzheimers. I have said, that we usually have to be impacted directly to act, and, to become involved in awareness campaigns, but, wearing a ribbon, for whatever the cause may be, is an easy way to show our support, even when we cannot do it with money, or, by other means.
I have found that there are individuals, who do not want to associate themselves, especially when it comes to HIV/AIDS. Either for fear that someone will think they are themselves infected, if a red ribbon is worn, or, of being accused of being a "supporter", of a ccertain group of people, that others may disagree with. I have always considered myself one, who is compassionate toward others, and never really thought about showing my support, be it HIV/AIDS, cancer, Alzheimers, or so many other things. I just happen to want to make others aware, by wearing my red ribbon, that however, does not mean that my particular cause is of more importance than any other. But, honestly, it is very important to me, to do what I can.
Something as simple as a ribbon, can, and does draw attention. Maybe not always in a positive way, but, nonetheless, it brings attention, hopefully causing others to act with compassion.
Do I wish I were not infected? Of course. But, since I am, I will continue to show I care by wearing my little red ribbon, for myself, and for all those, who like me, are in the fight. And, as a way to remember all those no longer with us. And, as Christmas rolls around, it adds a festive touch, that delights those, who do not know what it really stands for.
It Begins With Baby Steps 08/30/2012
If you, or, someone you know, have recently learned you are HIV+, it most likely, is a stressful, and overwhelming time, as it was for me, when I got the news, over two decades ago. Hopefully, you did not get your results like I did. I got the shocking news, that I was infected, while I was at work, with a phone call from the doctor who tested me. Rather than making a follow up appointment, he apparently felt a phone call was the proper way. His words to me, as I answered the call were…."This is the doctor you saw last week, your HIV test is positive, you have five, maybe seven years to live, and I suggest you find a doctor who will treat you".
That was 1991, so again, hopefully, you who have been newly diagnosed, got your news, face to face.
Either way, learning you are infected, can be quite a blow. I have heard some say, the news did not come as a shock, and, that it was no big deal. I think that falls into the denial category??
While there are many treatment options today, compared to when I was diagnosed, and perhaps, some may look at it today, as just no big deal, I personally feel it is to be taken seriously. Maybe my own personal journey with it, and having witnessed the many deaths, due to the complications of HIV/AIDS, and the discrimination and stigma, that so many of we "older" ones dealt with, is different to todays view by society. And, maybe it all depends on what part of the country, or world in which we live, as to how much stigma is still attached to an HIV diagnosis, for I have traveled to other parts of the United States, and, have found that having those with HIV/AIDS, living within those areas, perhaps seems more accepted. I am not saying everyone has an issue with those of us infected, but, only speaking from personal experiences, where I have been asked to leave the hospital room of a family member I was visiting, because as it was stated to me…"You are putting everyone at risk, by being here". And again, I am referring to a number of years past, when this particular incident occured.
As someone, who lives openly with my status, and having done so, for a number of years, I have become the "resource" and "counselor" for newly diagnosed people, needing someone to talk to, to learn how to go on from a new diagnosis. I still see myself, in many of these young people, who, are just trying to navigate their way, as I was, went I tested positive so many years ago. We are lucky, however, in this area of Tennessee, to have resources, such as Nashville CARES, and The Comprehensive Care Center, through Vanderbilt Hospital, along with satellite clinics, that serve the more rural areas, with treatment, and case managers, and other staff, that offer the basic needs of clients. However, with that, I find, that for someone newly diagnosed, just to be able to talk to an "old dinosuar" like me, who has lived through it, helps to ease the tension, and the overwhelming feeling, of , how do I go on from here?
I have often said, when it comes to HIV/AIDS, still there is stigma, and shame for many who are infected. For, as much education as there is out there, there are still persons, who are going to say, and do things , that will make the person living with the virus, to feel unworthy of love, and acceptance. It may not be as prevalent, as in times past, but, believe you me, it still exists.
My advice to those newly diagnosed however, is to surround yourself with support, be it friends, family, your particular community, or, in some cases professional help. Whatever it takes to get you "back on track", as there is life after an HIV diagnosis. There are healthcare professionals trained to help guide you through the process, of seeking treatment, and follow up care. And, with the many options of treatment these days, hopefully, someday, you will look back on these days, realizing you were stronger than you ever believed, and, that, you too, will have become a survivor of the HIV/AIDS epidemic that impacted so many lives.
A Hard Pill To Swallow? 08/29/2013
For those like myself, who have been living with HIV/AIDS, for over two decades now, many of us may have taken AZT, as it was the first U.S. government-approved treatment for HIV therapy, prescribed under the name Retrovir, was the first breakthrough in AIDS therapy, significantly reducing the replication of the virus in patients and leading to clinical and immunologic improvements. I began taking it on Christmas Eve, 1991, after I learned I was infected on October 24, 1991. I had been infected for two years already at that point, for, looking back, I knew who, when and where. (Maybe that will be a later article). At any rate, as I began treatment, with AZT, my T- Cell count was at 385. This was long before the viral load measurement came into play, so, it was decided by my doctor, who by the way, is still my Infectious Disease doctor today (Again, a later article), and myself, that I would begin treatment, and since AZT was the only available drug back then, thats what I took.
I recall in the days that followed, and, I was keeping a journal, regarding my HIV journey, as my body was getting used to the powerful drug, AZT, I experienced headaches, dizziness, nausea, loss of appetite, etc.. But, I toughed it out, for I was determined to fight the virus in my body. And, even though, I was having a difficult time, coming to terms with being infected, I stayed on course, took the medicine, and, hoped it would do what it was supposed to do.
I read, and heard of many horror stories, regarding AZT. Some could not tolerate the powerful, often called "toxic" drug, and, some claims were made that the AZT itself, actually killed patients. I am no doctor, nor, do I claim to know whether this was the case or not. I am merely saying, these claims were made by others. I remained on AZT for quite some time actually, even though the side effects, for me, to start with, were pretty harsh, but eventually subsided. Eventually, other drugs became available, and, I stopped AZT, and began new, and other treatments.
Over the past nearly twenty two years, since I began treatment, I have taken various pills, and/or combinations of drugs, never having stopped, in all these years. It just became a part of my everyday routine, and I have tried to remain as compliant, as I can, without missing a dose. I have missed very few times, that I have not taken my meds when, and as I should. I realize there are those who, for whatever reason, are not compliant, or, who have missed doses, and, some, who have taken "drug vacations", either because of side effects, the meds may have stopped working, or, just because. I by no means am preaching, for utimately, it is our own decision, whether to take meds or not, and, I feel our imput is as important as that of our healthcare providers. We, who are infected, do, or, should, put a lot of trust, in the doctors, and healthcare teams, who treat us, and, hopefully we develope a good, open, honest, working relationship, with all parties involved.
To get back to the subject at hand, however, those who are newly infected today, compared to those of my time, and before, there is a wide array, of treatment options, since the AZT days. And, the idea to start treatment early, after diagnosis, is something that seems to be the norm these days. And, again, that decision is made, or suggested, depending on different factors, be it a T-Cell count, percentage, or moreso, maybe the viral load, plays a greater role, in beginning treatment. I personally feel that the healthcare provider, many who are infectious disease specialists, have, in most cases dealt with HIV/AIDS enough to know, when treatment is needed, and then, we as patients, weigh our options.
With all this being said, for me, as a two decade plus survivor, with HIV/AIDS, even with some of the side effects of the drugs I have taken over the years, and continue to take, it has worked. That, along with trying to keep a positive outlook, of trying to take good care of my overall health, and maybe because I can speak so freely and openly about my positive status. Looking at the big picture, for myself, the meds, even the AZT in the beginning, have helped to keep things in check, in that my most recent test results show my T-Cell count at 601, and at 26%, plus a non detectable viral load. I do know, and understand however, that we all have different immune systems, and what works, and has worked for me, may be totally different for others. The combination "cocktail" I now take, seems to be working, even though I am about to embark on a new treatment, called Egrifta, which is a once a day injection, used to reduce excess fat (lipodystrophy) in the abdomen or stomach in patients infected with human immunodeficiency virus (HIV). This too, will be followed up at some point in the future, in another article.
I'll keep you posted.
Standing Strong in the Face of HIV/AIDS
I have been living with HIV/AIDS for nearly 24 years. I tested positive at a time, and in a rural area of Tennessee, where no one dared to let others know that they were infected.
On World AIDS Day, 1994, I changed all that, by becoming the first person in my community to go public with my HIV positive status. I did it for many reasons, one of them being to put a local face on the disease.
There was a degree of shame associated with HIV/AIDS, and in the early days after my diagnosis, I held shame within myself. But, by being a public face of someone living with HIV/AIDS, I eventually shed the shame I carried, and in the process, not only became a voice for the voiceless, but became a voice for myself.
Dr. Stephan Raffanti, my Infectious Disease specialist, once said "Whether we realize it or not, we all are affected by HIV/AIDS." Those who are affected include, partners, family, and friends who are directly impacted, and often respond with care and compassion. Those who are indirectly affected may not realize it, and go about their lives. We who are infected play a role in how others respond to this epidemic, frequently throwing ourselves into awareness events, such as AIDS walks, World AIDS Day activities, and the like.
Shame is a great weight to carry, and we all, at some point in our lives, have dealt with shame in one form or another. Shame associated with HIV/AIDS, however, is different, in my opinion. Speaking from my own experience, I had to come to terms with my feelings about my life, including regret from disappointing those who were most important to me, reproach from those who would not accept me and how I became infected, and anxiety over how I would carry on following the news of my HIV positive diagnosis.
Many people express disgust toward those of us who are infected, and may even try to worsen our feelings of shame, perhaps thinking that such actions somehow make them superior. Sadly, all these years later, in spite of public education campaigns, there is still a great stigma attached to HIV. Just today, I experienced it, and was a bit caught off guard.
There are those who cannot be as open with their lives, and HIV status, as I am, for a variety of reasons. And as someone who grew up in a rural area, I can somewhat understand. With that being said, however, it takes those like myself to rise up and make a difference, to try and erase the shame, stigma, and judgment that continue to be a part of HIV/AIDS.
Neither I, nor anyone who is infected, can change our status. All we can do is the best we can to incorporate our infection into our lives, and to not carry the burden of shame. In order to live well, we must cast off the negative views, words, and actions of those who try to shame us into silence, and instead use them to renew our determination to live our lives. I realize this is easier said than done, and even after all these years, I find myself questioning how I ever made it to this place in life. I will still stand strong, even in the face of those who try to cause doubt within me.
Surmounting the Obstacle of Living With HIV/AIDS
During a recent speaking engagement at a college Humanism In Medicine class, I was asked many questions about my life with HIV/AIDS since I learned I was infected. One young man asked what my greatest obstacle has been as someone living openly with my HIV status.
One such obstacle for me was forgiveness. Forgiving the person who infected me, and forgiving myself for being so trusting that I allowed myself to become infected. Obstacles can sometimes seem like mountains, and making the climb to the top allows us to see that we can overcome them, turn them into life-long lessons, and grow as humans.
I will admit that before I became infected, I was naive when it came to HIV. Not that I did not know the ways it could be transmitted, but rather, because I lived in such a small, rural area of Tennessee, I just felt it was something I'd never really have to be concerned with. I thought it was only happening to others in large cites, far away from me. I now realize I grew up living a very sheltered life, and unfortunately that played a part in my contracting HIV.
I do not blame anyone other than myself for participating in risky behavior with someone who was infected. However, with that being said, I trusted the person who infected me, because we discussed being tested for HIV. I had tested negative shortly before my encounter with this particular person, who told me he, too, had tested negative. Some time later, he revealed that he was actually HIV positive. Basically, I was lied to.
All this became an obstacle for me to overcome. How, I wondered, could someone be so cruel as to knowingly infect another person? How would I ever come to terms with this? As a naive young man, I took everyone at their word, and with this life-changing situation, I had to rethink my whole being. I had to figure out a way to not let what had happened to me define the rest of my life. It took a great effort on my part. When we are faced with obstacles, we have to find a way to either remove them, or use them as learning experiences. I feel I've used my obstacle to learn and grow.
First, and foremost, in order for me to move on with my life, I had to accept my own role in this situation. Then I had to deal with the anger and hatred I felt toward the person who had knowingly infected me. It did not happen overnight, but luckily it did happen eventually, and I did not let it consume me. Had I done that, it would have become a greater obstacle. After all, I could not change the fact that I was indeed infected, so why not let go of my past mistakes, and derive some benefit from the whole situation.
My journey with HIV/AIDS changed me into an advocate. It taught me that being naive, or sheltered, is no reason to avoid taking the responsibilty to protect oneself. It also taught me to not be so trusting as to believe others when it comes to matters of HIV infection. We adults are responsible for our own decisions, and cannot always lay the blame elsewhere, even though others, and circumstances, may play into the situation at hand.
I have come a long way from those early days of being newly diagnosed, and have since let go of many things that once seemed to be unbearable obstacles I could never overcome. Life has a way of working out, if we are willing to open ourselves to it. Forgiving others, and oneself, letting go, learning, growing, that's what matters. Don't let life itself become an obstacle.
The Daily AZT Dose, My Life's Routine
Starting my day involves making coffee, and making sure my pillbox is at hand, containing the life-sustaining meds that ease my life with HIV/AIDS.
For more than 20 years, I have taken meds of one kind or another. I started treatment for HIV on Christmas Eve, 1991, with the introduction of AZT into my body. I will admit that AZT was not easy to tolerate, but I stuck with it, for it was the only approved drug at that time to treat HIV. Because I had been given a five to seven year prognosis, I felt it was at least worth trying. Since my early AZT days, I have always been on some kind of drug regimen to keep HIV/AIDS at bay within my body.
For most of us infected with HIV/AIDS, meds are just a part of our lives to keep us healthier, until something better comes along, like a cure. Learning to live with HIV includes starting drug regimens that have possible side effects, typically headaches, dizziness, and nausea, and making it through those effects without skipping or stopping dosages.
Sometimes one med or another just cannot be tolerated. Luckily for me, I have been able to tolerate almost all the meds I have been on over the years. Except for one, I have continued to take the meds prescribed for me every day. One of the hardest things to maintain, I am told by others, is adherence to a drug regimen. To remember to take one’s meds, and to not skip doses, is a very important, if not the most important aspect to treating HIV/AIDS. The virus can quickly mutate within the body, and skipping or stopping doses allows the virus to gain a greater hold, making it more difficult to treat, so adhering to a prescribed drug regimen cannot be stressed enough.
I do not mean to come across as preachy on the topic of treating HIV/AIDS. We all have to make our own decisions in the role we play in our own health, and that includes how we stick to our treatment plan. I feel my doctor and his team have my best interest in mind with my treatment plan, and it is my responsibility to respect their expertise by taking the meds as prescribed, and to not miss, or skip a dose, just because I want to. If I am not going to follow the advice of my doctor, I probably should not be seeing him in the first place, and if the treatment does not work because I choose to not take a med, I have no one to blame but myself.
I do understand that some meds just cannot be tolerated, but that is something to discuss with your doctor, so that together you can weigh other options. Adherence is one of the first things my doctor asks me about when I go in for my checkups, followed by questions or concerns about possible side affects. Having a good relationship with your doctor is key to a good treatment plan.
As I make my way toward 25 years of living with HIV/AIDS, far surpassing my original prognosis of only five to seven years, I can’t stress enough that meds have played a huge part in my overall health. Even when side effects made me want to quit, I can’t deny that taking the meds has helped me to stay healthy. When newer drugs with less toxic side effects come along, I’ll have more options to change regimens down the road. We have come a long way since the early AZT days, and as hard as it has been to keep taking that drug, it has helped to keep me alive all these years.
Again, adhering to your drug regimen is ultimately a personal decision, for you are the only one who really knows your body, and what you can and cannot tolerate. But for me, it works for now. There may come a time when I cannot tolerate taking certain meds, but even then, I will involve my healthcare team before I make the decision to skip or stop doses.
Well, the coffee is ready, and the pillbox is at hand. The daily routine continues….
One World, One Hope, Looking Back, Moving Forward
My attempt at poetry, for World AIDS Days, 1996, in which the theme was… One World, One Hope. Clearly HIV/AIDS is still with us, many have fought and are no longer with us, and many new numbers of infections continue.
Within my heart, I have the hope, that someday I can say, the ribbons of red, are put to rest, the virus is taken away. To make it through this storm of life, I carry deep inside, a thing called hope, to hold on to, which makes the storm subside.
I hope for the time, when I shall see, that all mankind unite, to take their place, and do their part, while joining in the fight. The change we make, the courage we have, to stand up and be heard, it oftens speaks the loudest, yet, without saying a word.
Just try and have compassion, to care and understand, that we are all in this together, to extend a helping hand. Have hope of overcoming, the ignorance and the fear, of this disease that we call AIDS, that lingers ever near.
Have hope my friend in all you do, be it great or small, for in one world, that has one hope, we will surely conquer all. The hope I have and carry, is with me everyday, it helps to move me forward, all along the way.
Still, the battle rages, the fight continues yet, it claims another someone, we simply can't forget. Yes, hope is everlasting, and is our constant friend, to take away our doubts and fears, hope is with us to the end.
Remember as you travel, on the journey known as life, there are those who have grown weary, from the daily strife. So make yourself the promise, the challenge you will meet, to show the world, and then yourself, that we shall not be beat.
Hope leads us gently forward, and strong it helps us stand, amidst the toughest battles, we take each other's hand. As we hold the hope inside us, that a brighter day will be, for to have one world, that has one hope, begins with you and me.
In The Shadows Of STIGMA
In todays world of HIV/AIDS, there is much talk about stigma, and how, or if, it has changed for those of us who live with the condition. It still exists. Plain and simple, it does. As for those who consider themselves, living outside the scope of HIV/AIDS, it seems, there is an uncomfortable atmosphere, when it comes to how to deal with HIV/AIDS, and those of us infected. Maybe I am one who over thinks the subject, but, I often find myself watching the reactions, and body language, of those I come into contact with, in that they have known me for years, and, of my openess about my life, and HIV, or, who are meeting me for the first time, and learning that I am someone living with HIV/AIDS. That, to me, in itself, is a form of unspoken stigma. And sometimes, the unspoken thoughts and reactions, are as stigmatizing, as the actual acts of stigma. It is easy to to place our beliefs, whether right or wrong, on others, rather than actually taking the time to consider how it might affect others.
October 24, 2013, marks the twenty second anniversary of my HIV positive diagnosis. I had been infected two years prior, by the person I was seeing at the time, and did not know that I was infected, until I began having health issues in the summer of 1991. So, in light of learning I had been already living with HIV, for two years, at that point, it has actually been twenty four years.
My case is what has been referred to as a "homegrown" case, in that I can trace back to whom, and where I became infected. And, also, in that I became infected within my own area that I lived in at the time. Even though I was living in my hometown, I was traveling to Nashville Tennessee, and this is where it happened. Many cases of HIV/AIDS, at that time were being reported as a result of those infected, coming back home, from much larger cities, and more populated areas of the United States, to where they felt more accepted, and were away from much of the stigma attached to "home" in small town America. In many cases, sons and daughters were coming back home, to be closer to family, in that they had become so sick, and were coming back to die at home.
As I think back over my twenty four years of living with HIV, and eventual AIDS diagnosis, in that my T-cell count dropped below 200, some years back, therefore, giving me a clinical diagnosis of having "full blown" AIDS, much has changed over the years, as far as treatment, and the prognosis of a shortened life, yet, much is still the same, when it comes to the views of the general population, who consider themselves as someone not in a high risk group of people.
The overall mindset of many, is that HIV/AIDS, only affects certain "types" of people, and it has been, and continues to be a moral issue for many, especially so in the southern United States, in small cities and towns, such as the place I was born, and grew up in. And perhaps, it is this way, in all areas of the country. I can only speak from my own experience, in that I have never lived in a heavily populated, metropolitan city, rather, having lived my entire life of nearly fifty two years, in the rural south. I have visited other large cities, and areas around the United States, and even outside the U.S., and often have found a different "feel' for life. I love living in the South, so, I'm not knocking southern living. I just know that there is life beyond the county line.
I have been lucky in one respect, to have been able to be open with my life, and my HIV/AIDS status, and, to have those who treat me no differently, and, for that I am grateful. But, on the other hand, I have dealt with my share of stigma, due in part to lack of education, religious and moral beliefs, or possibly, just plain ignorance, on the part of those who, direct their words, actions, and quotes of Bible scripture to me, even to the point of telling me… I wish you were dead, or, you deserve to burn in hell, and that, I should be ashamed to even show my face in public, for living my life as I do, and for being so public with my status, as if its something to be proud of.
I, like so many others in the South, were raised in some form or another of religion, and, I, by no means am trying to disrespect the beliefs of anyone, but have found, and again, by my own experience, that the religious groups/churches/ministers/christians, have failed to be a part of offering compassion, care, and inclusion, to those of us living with HIV/AIDS. Rather, for the most part, have cast aside the "Christ like" examples, because being a person living with HIV/AIDS, causes such an uncomfortable atmosphere, and a guilty by association mentality for most people, lack of kindness, compassion, or, even an attempted understanding of those like myself, who are morally unaccepted, because of our lives and a disease that we have, is in many caes the reaction. There is much isolation for those of us living with HIV/AIDS, in that we are made to feel that we do not belong, and that God, or whatever higher power you believe in, does not love or accept us.
For what is about to enter its quarter century mark for me, I can look back and say, yes, I have seen many changes. Changes in treatments, ideas, and perceptions of others, who feel they are not affected. I have ofeten said, if others can ever come to terms with how a person becomes infected, they can then, possibly better deal with the idea of a friend, or family member living with HIV/AIDS. I have seen so many families turn their backs, on loved ones, when it is learned they are infected, and, often I've attended funerals of those who died of AIDS complications, and witnessed the shame of those, who are supposed to love you unconditionally. I'll have to say, I am blessed to have family and friends, who love me, for me. But, even with that, I'll have to say, living with HIV, has been, and can be, at times, a lonesome, and sometimes isolating thing. Perhaps, that is of my own doing, moreso, than that of others, for I have always tried to be a good, and caring person, who tried to treat my fellow person, with dignity and respect. That is something I have always wanted in return, but, by being one who is a public advocate for myself, and others living with HIV/AIDS, regardless of how we became infected, is something I don't always get, and that in itself saddens me, and honestly angers me a bit, when there are those, who ignore me when I speak to them directly, or leave the room when I'm in their presence, just because I make them uncomfortable, or, who talk behind my back, making me out to be one of "those" people, who is unworthy, immoral, or a shame to be associated with.
One, of many things I have learned about myself over these past two, plus decades, is that I often speak my mind, and try not to be the intimidated, shy, voiceless person I once was. That in itself, is one of the changes, I feel, for the better, and had it not have been for HIV in my life, I would probably have spent my whole life, trying to be a people pleaser. Perhaps, it is more of an age related thing, moreso, than an AIDS related one. Whichever it is, its a good thing.
One of the things I had hoped for, when I decided to go public with my positive status, nearly twenty years ago, was to help erase the stigma attached to the AIDS epidemic, and, to possibly give those not infected, and who viewed those like myself, as less than, an opportunity to try and examine their own thoughts and preconceived ideas about the life of another person, and to at least try to put themselves in our shoes. I'm not sure that ever happened or changed over the years, for I think that so many of us are so "stuck" in what we believe, or, what we have been taught to believe, that we cannot even entertain the idea, that what we have always held on to as b