HIV Aids

In My Feelings: 16 Years Since My AIDS Diagnosis


This time of year always makes me melancholy. The falling leaves, the darkening sky, pumpkin spice everything. When a chill hits the air, a chill hits my memory. It’s autumn, and autumn makes me think of Arkansas.

The phrase “Autumn Makes Me Think of Arkansas” sounds like a country song, no? I should trademark that shit and send it to Wynonna.

Sixteen years ago, I was living in Arkansas, Little Rock to be precise, when on Nov. 4, I was rushed to the University of Arkansas for Medical Sciences emergency room. In the weeks leading up to that day, I’d been terribly sick with what I thought was a mean case of bronchitis. Turns out, it was pneumocystis pneumonia, histoplasmosis, and thrush. I was spitting distance to dying, placed in a drug-induced coma for the better part of a month. I woke up with my family around me to be told the diagnosis: AIDS. My viral load was through the roof, and my CD4 count was 4. I hadn’t even known I was HIV positive.

The memory of the sickness, the coma, and the frightening diagnosis still echoes within me. I have flashes of being in that hospital: the frightened looks on my parents’ faces, having to rely on nursing staff for every bodily need, feeling deeply ashamed of being someone who’d acquired HIV.

One thing I vividly remember is that the food at the hospital was horrendous. I poo-poo’d about the food, and my brother John told me to think of it not so much as a meal, but more as a feeding. When the doctor asked why I wasn’t eating, I responded that I couldn’t eat food that smelled the same going into me as it did coming out of me. The remedy was having friends and family smuggle me in Whole Hog barbeque platters and bags of Taco Bell.

This one day, my friend Michael came to visit me. I’d had a particularly emotional morning, and Michael let me cry on his shoulder and lament about my HIV. Then, with a Cher “Snap-out-of-it!” stance, he said, “You know what, buttercup? I think you’ve got a really shitty attitude. This isn’t 1989. You’re not going to die of AIDS. Just take your meds and do what the doctor says, and you’ll be fine.”

I regained strength and left the hospital on Thanksgiving Day, the best Thanksgiving of my life. I had such a feeling when leaving the hospital with my parents! You know when an Olympic gymnast does an amazing quadruple-tumbley-twist thing, and then they complete it by spreading their arms wide as if to hug the world with a huge smile on their face? That’s how I felt.

Today, I live in New York City (Queens, baby!) and my health is great. I take my meds regularly, get my annual flu shot, eat healthfully (with the possibility that I overdo it on buttercream), and exercise regularly. At my routine check-ups, my criminally handsome doc says I’m a boring patient (“How dare you, doctor!”), with my blood work consistently coming back with an undetectable viral load and a healthy CD4 count (most recently at 695). My good cholesterol is high; my bad cholesterol is low. My sugar levels normal, kidneys normal, testosterone good (thanks, Androgel). Gonorrhea negative, syphilis negative. Although I do have a smidge of herpes (and who doesn’t?), its flare-ups are so rare as to deem it insignificant.

I am getting older, which is better than the alternative. I’m in that group of people living with HIV over 50. Now, when things come up health-wise, I’m never sure if it’s because of my case of H-I-V or my case of O-L-D.

For example, I’ve had both hips replaced because of the development of avascular necrosis. Doctors said that this condition is happening to patients living with HIV, but not all of them. Medical professionals are not sure if it’s some manifestation of the virus itself, a result of drug toxicity, or something else.

Just this year, a few months ago actually, I suffered a transient ischemic attack (or TIA). One minute I was reading a book aloud, when suddenly the words in the book didn’t make sense and I couldn’t speak. My eyes and my brain and my mouth couldn’t get it together. There was no pain or anything, but it was really startling.

Then it ended as abruptly as it appeared. I went to a neurologist, who did a battery of tests resulting in no signs of anything major (like a tumor, etc.) and said another TIA is not likely to occur. It was possibly HIV-related, possibly not. Then he sent me to a cardiologist, who discovered there’s a hole in my heart (which explains my love life!). She did a few tests and concluded that it’s probably not a big deal; I’ve most likely had it my entire life. Or not. I may have to have it repaired, or I may not. (Follow-up appointment scheduled for November.) And the cause? Possibly some manifestation of HIV but there’s no way to know. Or possibly it’s just because I’m getting older.

Ugh. All this makes my annual AIDS-iversary melancholia redouble. It’s enough to make me want to curl up on my bed with a giant vat of Betty Crocker Rich and Creamy and just say to hell with it all.

But then I stop and take a deep breath. And then I let it out (never forget to let it out!). “Remember, Charles,” I tell myself, “Oprah taught you to be grateful.” The reality is that I have a whole lot to be grateful for. It sounds a little cheesy and kumbaya, but if I accentuate the positive (is that an appropriate phrase for an HIV article or what?), I see that my life is pretty freakin’ great.

I’m alive. That’s an amazing feat, seeing that there are so many things along the way that could have killed me. Besides AIDS, I’ve also been known to, as the great Elaine Stritch said, “lift a few in my time.” My unhealthy devotion to alcohol, plus my dabbling in other pedestrian pharmaceuticals, could have easily taken me out, but here I still am, kicking strong with a tad over nine years sober. I have a studio apartment by myself that I can afford. I have great family, both logical and biological. I have outlets for my creativity, which has included in the past coupla years getting back to singing and performing, my first loves. Also, I recently had a handsome gentleman in a dating app ask me to send him nudes. Trust me, as a 51-year-old man, to have anyone desire to see me naked is a g.d. miracle!

So there are great things and there are hard things. Sounds like life, I guess. I’ll walk around for the next month or so with seesawing emotions: gratitude for all that I have today, hand in hand with the blues.

That sounds a little like a country song too.

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