It’s the End of the World as We Know it
(and I feel fine)
by Sal Iacopelli
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...
In the early 90s, I took a job at the now defunct AIDS Alternative Health Project (AAHP), an organization that offered complementary health care to people with HIV. After two years, I learned so much about alternative treatments, as well as Western care, and met so many dedicated to the fight that I summoned the courage to test.
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.
- Develop / nurture a support system
- Educate yourself on treatment options
- Treat your healthcare practitioner as an equal
- Eat well
- Keep recreational substances to a minimum
- Rest and get enough sleep
- If on meds, be compliant, be compliant, be compliant
- I know this is maddening but… try to keep stress to a minimum
- Keep your heart open and love others as well as yourself
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.