It's the End of the World as We Know It(And I Feel Fine)
September/October 2009 I hate surprises. Surprises, being caught off-guard, being unprepared. Okay, I have a few control issues, but really, it's all about self-preservation. I was in my 20s in the 80s. Not the opportune time to be hyper-sexually active. Bookstores, bathhouses, bars, backstreets. My wardrobe consisted of shades of black, with clunky black shoes. Ah... days gone by. In the 80s, typically what happened was you got ill, went to a doctor, was diagnosed with AIDS, and were gone within two years. My thought was, well, if I do test positive, what would I do differently? Nothing. So, I waited and acted as if I were positive and took care of myself as best as I could. I put off taking the test for the longest time due to the fact that, "back then", there were few options for people who tested positive. Thank you very much, Ronald Reagan, who consistently and methodically ignored AIDS until it was impossible to ignore. Yet, he is now hailed as one of our greatest leaders? The bitter bile of rage rises to my throat every time I travel I-88, coined the "Ronald Reagan Expressway." The only "leader" (and I do use that term loosely) worse than Reagan was "Dubya," the destructive sum'bitch bloodsucker. Ah, but I digress... I prepared judiciously. I had a medical practitioner in place, a very sharp guy who, as an added bonus, was smolderingly hot, with dark black hair, a thick moustache and a slight, incredibly sexy, Eastern Indian accent. I had a strong support system, as well as an arsenal of alternative health care and knowledge at my disposal. If the results came back positive, I was equipped and had a game plan. The day of my results, I sat nervously with two friends, fully confident that if I was indeed positive, I could handle it. My doctor informed me he didn't have the results in hand, but got verification on the phone that my test came back. Negative. Woo-HOO! I was elated beyond belief and felt my life stretch infinitely before me. I did many things to celebrate, including buying two pairs of clunky black shoes. Two days later, my doctor phoned to tell me he had received my test results in hand... he had been mistaken. The results were inconclusive and I had to retake the test. My elation vanished. Three days later, July 5, 1993, I was again in his office with my supportive test buddies. I looked into the deep pools of his dark brown eyes and heard him report, "the results are positive." I had been emotionally prepared to hear that result from the first test, but after the reprieve of thinking I was negative, I was stunned. But not stunned enough to not contemplate the softness of his lips or to forgo buying two more pairs of clunky black shoes. At that time, there was no viral load test, but luckily, my T-cells were in good shape. After a bit, I pulled myself out of the pit of despair and faced the hand I was dealt. I hold that I was able to do so due to the fact that I had set up a strong network and had the wisdom of many at my back. HIV hasn't been the smoothest ride on the planet (think the Superman rollercoaster at Six Flags), including a very low point in '95 when I progressed to AIDS, however, I am one stubborn (yes, and controlling) bastard. Now, to my utter surprise, I am pushing 50. Positive for 16 years, AIDS diagnosed for 14 of them. How does one survive after testing HIV-positive? I suppose I can be considered a "long term survivor." Odd, considering I thought I would never see 40, but the best I can do is share what I suspect supports longevity.
I am so not suggesting anyone should be a perfect little HIV robo-tron. Hell, I most certainly am not the ultimate HIV-positive role model. I am a dedicated smoker, at least a pack a day, thank you, with an occasional cigar. I eat well, but live for carbs, red meat, and dairy products. I have a Sicilian family who has an inclination for drama, capital D. I drive recklessly, still love the occasional "backstreet congress," and drink coffee by the gallon. But I also strive to keep those pleasant pastimes in check and connect with friends, get as much sleep as I need, work at keeping my involvement with family drama to a minimum, and loving my dog Sofi beyond reason. And yes, occasionally adding to my large collection of clunky black shoes. Has my life changed from my dance with HIV/AIDS? Most definitely. Do I wish I didn't have to deal with this day after day after day? Indeed so. However, this is what I must face and I do so as best I can. I urge you to so the same. Dedicate yourself to living, know that others have done so before you. Most importantly, know you are not alone. Got a comment on this article? Write to us at publications@tpan.com. This article was provided by Test Positive Aware Network. It is a part of the publication Positively Aware.
Comment by: Linda N
(new jersey)
Fri., Nov. 20, 2009 at 2:44 pm EST I wish you many more years here with us. I wish my late fiance would have had your attitude. He only lasted 3 years. Instead of living to live - he lived to die, only thought in the negative. I found this website and would constantly tell him to read up about his disease, but he didn't want to. There have been so many things happening with medicines since he was diagnosed 6 years ago. Instead of trying his best to stay alive, hopefully till there was a cure, he would rarely take his medicines. I hope anyone who reads this will think twice before stopping their meds - just think if you stick around long enough there just may be a cure.
Comment by: nicole williams
(houston tx)
Sun., Nov. 1, 2009 at 12:49 pm EST what do you do when every body try to pressure you to over look your pain you know your not the same at one time you use to be one of the happy person people use love to be around you ithen give up on who i use to be i still the same person in my heart but not in action
Comment by: Richard
(Puerto Rico)
Sun., Oct. 25, 2009 at 12:04 pm EDT I agree with your tips on how to live a long and healthy life with HIV. I have been positive for the past 23 years and am now undetectable and healthy. I was detected while enrolling in the army back in 1986. I was never surprised when the army doc said I was positive. Obviously, I was denied admission. Since then I've had steady jobs and am still working. I am going to be 46 next month and I've never been in better shape in my life. I think the things that have helped me survive so long have been; eating as healthy as possible, no recreational substances and except my occasional 2-3 drinks at pubs or parties, sleeping the necessary hours, loving life, being in a 14 year old relationship which has never lacked sex just because I am positive (my partner is negative to HIV), and being constant with my medications and believe me when I say I've tried them all because I have never been undetectable until 3 years ago. The new meds are the best ever and progress in being made for new ones especially for resistant hiv'ers like myself. I really don't even think about my status on a daily basis because I am full of things to do and my mind is focused on achieving things at work and at home. I always have future events that I just program myself to accomplish and this keeps my mind focused on getting to that date and that sort of gives me a goal to reach thus my body and mind just work together to keep me healthy and with a positive attitude to reach that moment. I have had my bad times with delicate health issues, but with persistence, prayer and faith I have been lucky to pull through those hard times...
Comment by: jean-claude
(johannesburg, RSA)
Tue., Oct. 20, 2009 at 12:02 pm EDT I have been positive for 6 years now and even if I went through a lot of phases regarding my status I never never regreted to be opened to my close friends and my family. I have been through Leukemia,HIV and i am very happy involved. I pushed my limit by living my dreams... I climbed the kilimanjaro, i did some free falls, hiking around the world, traveling and going to gym three times a week when i can... i have stunning colleagues, less stress at work. I am taking only three tablets a day while people with cholesterol or heart prob are taking much more ... so Why should I complain???? be happy and live your life. Be the best you can for your friends and family. Just simply be yourself.
Comment by: jp
(Ireland)
Fri., Oct. 16, 2009 at 6:16 am EDT I totally agree with you. There is no point giving up. Life is for living and just because you become infected with HIV does not mean life has to stop. 4 years on with undetectable vl and T cell over 900 i feel great. I smoke and and drink but the most important thing if on meds is to be compliant. I try not to get stressed but its hard when you are working 6 days a week but i think work keeps my mind occupied. It is not the end of the world been HIV. As the song goes ALWAYS LOOK ON THE BRIGHT SIDE OF LIFE.
Comment by: anon
Fri., Oct. 16, 2009 at 2:21 am EDT i must say, you tell a great story. i did the same, i went out to make sure i knew it all before i got tested and mine came negative time and again. until i got reckless... i shared cutting objects with an infected relative of mine, and sadly i got infected. it's only been a year, i am not scared most of the time. i do all that i used to do before, nothing changed in that sphere the only sadness is that i know have to worry about every ache i feel. but i say to any, we are lucky to be diagnosed today, lots of ppl weren't so lucky.
Comment by: Daniel
(Melbourne, Victoria, Australia)
Thu., Oct. 15, 2009 at 3:51 pm EDT Ha. It's only the world's deadliest infectious disease in terms of the number of people dying from it and yet most of the world's big, tough leaders are apparently too shy & reticent to deal with it because of the political implications of talking to the fact that real people actually have sex and take drugs and don't quite obey the Bible, Torah, Koran or sundry other Scriptures like they are supposed to do. HIV will decimate the human race because it is the smartest virus ever, not just physically, but politically as well. HIV is a political virus. Because it strikes at sex and the world's leaders turn to jelly when you mention the word "sex" because they are either hostage to their churches, mosques and synagogues or enamoured of a "conservative values" ideology ordered straight from the local Politbureau (China, I'm looking right at ya). I thought being positive would amount to a medical thing really, and in practical terms it has; but the amount of moralistic baggage people (even those with the best of intentions) try to heap on me is just unbelievable. Everyone is like, oh well, at least now you will change your behaviour, change your life style and...become the monk you know you really ought to be, and who I really ought to be as well but won't be because I'm not positive am I; but you are. No thanks. Everyone's suddenly saying how I need to take good care of myself, but really, why? I never did before. Ultimately HIV gets you when you change your life because of it even though you have no inclination to do so. I'll take my supplements and medicines but I'm not gonna stop having fun on Friday night, no way. Like Nietzsche said: Gaze for long enought into the abyss, and the abyss gazes also into you. Which is good enough for me :)
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