HIV has been with us for a long time. Longer than most realize. The oldest known tissue samples that exist come from a male in Kinshasa, The Republic of the Congo, and date back to 1959.
Certain markers in the DNA fragments lead many scientists to believe that HIV has been with us even longer, possibly 30 years earlier or more. It’s commonly known history that the virus found its way — incognito – into the gay male communities of larger urban areas by the 1970s and began to manifest as full-blown cases of AIDS by the early 1980s.
Young men in cities like New York City, San Francisco and Los Angeles were the first to be hit. Regardless of where they were, they had a number of things in common: sexual orientation, frequent sexual activity and dying from causes mainly associated with the elderly.
Seniors were and are a portion of the population known to suffer with complications arising from weakened immune systems, which can provide an easy doorway to opportunistic infections. But young men, succumbing to conditions normally associated with advanced age, remained a mystery.
It took physicians and scientists working in conjunction with the World Health Organization and the Centers for Disease Control time to unravel the mystery and find the root cause. In 1983 the discovery was made: a retro virus that robbed human beings of their immune system, leaving them open to an endless litany of diseases that, more often than not, led to death.
While the medical community floundered throughout the rest of the 1980s and much of the 1990s, an estimated 2.3 million people died from AIDS related causes.
But not everyone died, and not everyone got sick. Some people seemingly had a genetic makeup that gave them a stronger resistance to the virus and others survived long enough to eventually take advantage of anti-retroviral therapy that was first introduced in 1995, and available on a much greater scale by the end of the decade.
Since the initial discovery of HIV in 1983, infection has gone from a death sentence to a manageable condition and a projected lifespan with little to no difference of individuals who are HIV negative.
With the introduction of PrEP (pre-exposure prophylaxis), which reduces the possibility of contracting the HIV virus by as much as a reported 99 percent, the number of positive individuals in the LGBTQ+ community has been reduced drastically. In fact, statistics show that most young gay men in their twenties and thirties are not HIV positive.
While those developments are astonishing, HIV still exists and education on the topic is still needed. Here are three North Carolina residents sharing very different perspectives of success from multiple generations that cover a time beginning before the pandemic was realized and continues through today
Jim Grimsley
Of all the individuals profiled in this collection of stories, Jim Grimsley, 68, has surpassed his earliest physician’s projected lifetime 40 times over.
Definitely a survivor and thriver, Grimsley is an award-winning novelist and playwright.
Like others in his family, he is also a hemophiliac. He believes he was originally infected in 1978 with the HIV virus from a blood transfusion he received in New Orleans.
“I grew up in Jones County near New Bern, North Carolina,” Grimsley recalls.
He later attended UNC Chapel Hill, where he met another North Carolina native. The two became close friends and decided the time had come to make a move and have some fun following graduation.
“We decided on New Orleans. We had a great time, but I decided I had to get out of there before I drank myself to death,” he chuckles.
Grimsley believes he was originally infected five years before anyone knew that HIV existed. “I went to the [county hospital] for an infusion. That was before the blood was being tested and they were taking donations from all kinds of people, a lot of them IV drug users, so it seems the most likely possibility.”
The challenges he experienced with hemophilia didn’t prevent Grimsley from moving forward with an active and creative life and his plans to leave New Orleans. He made a move to Atlanta in the early 1980s, where he fell into a theater crowd, which eventually led to his success as a playwright.
It was there he also discovered he was HIV positive in 1984.
“As a gay man, I wasn’t terribly sexually active, but I learned that as much as 80 to 85 percent of people with hemophilia were probably positive,” Grimsley recalls. “So I got in touch with a doctor. He more or less told me to kiss my ass goodbye.
“They wrote me a prescription. Demerol. They gave me 100 of them and [the staff member] said, ‘in case you need it.’ I think he gave it to me if I wanted to kill myself.”
But Grimsley didn’t kill himself, although he confesses he mentally “crashed and burned.”
“I didn’t take any of the stuff, but my friends had a lot of fun with the Demerol,” he says with a laugh. “I didn’t take anything they offered back then. AZT was worthless, I think it hurt more people than it helped. I didn’t want to take that.
“After therapy, I calmed down. I didn’t internalize it and I was always very open about it.
When asked about his long-term survival, he doesn’t hesitate with a matter-of-fact response.
“I have no idea,’ he offers. “I never let it bother me again after I came to terms with it. I was always upfront and ready to tell anyone, but I decided early on that I wasn’t going to let it rule my life. I refused to identify as a victim and to be honest, I just kind of ignored it. I kept up with the research, and for a very long time I didn’t have any issues.”
Around 18 years or more after Grimsley was initially infected, he developed a case of pneumonia.
“That was 1996, around the same time they started offering a form of treatment called the cocktail. I got on it.”
Clearly, Grimsley’s formula of positive outlook and medication when needed worked well for him and didn’t hinder a full life.
Over the years, he has served as a playwright in residence at 7Stages Theater of Atlanta and About Face Theater of Chicago. For 20 years he taught writing at Emory University.
During his career as a playwright he wrote such acclaimed plays as “Mr. Universe,” “Math and Aftermath,” “Man with a Gun,” “The Decline,” “Fall of the Rest,” “In Berlin” and “Fascination,” among others.
As an author, he has penned 12 books, among them such notable novels as “Winter Birds,” “Dream Boy,” “My Drowning,” “Kirith Kirin,” “Comfort & Joy” and “Boulevard,” as well as the memoir “How I Shed My Skin: Unlearning the Racist Lessons of a Southern Childhood.”
He returned to North Carolina in 2014 and now calls the town of Goldsboro home. His most recently published novel, entitled “The Dove in the Belly” was released in May of 2022 and he’s still at it, with one completed project in the works to be published and more on the way.
“I’ll always write,” he says. “I’ve had a blast [and] a good run. I feel like I’ve still got a few more books to turn out.”
Camil Moss
Camil Moss, 37, works as a cosmetologist and in management at a local hair salon. She identifies as a trans female. This year has been an important and event filled time for her.
She was diagnosed with HIV just over 10 years ago in August of 2013 and has been on medication to keep her viral load undetectable since March of this year.
“I was really in shock and disbelief when I first found out,” she recalls. “I didn’t believe it. But now I take my meds, I eat better and I live better. So far I have had no health issues, although I’ve had to deal with some depression. I do okay.”
Moss admits divulging your HIV status is a personal decision for each individual and isn’t always easy.
“I’m still learning how or when to tell people I’m positive,” she professes. “I’m not ashamed, but I know how ignorant about it people can be. Unless I’m really close to someone I don’t usually tell them. It’s a challenge. And I feel like my life is full of challenges. I’m Black, I’m a trans woman, and I’m HIV positive.”
A native North Carolinian and a long-time resident of the Charlotte area, she has lived as a woman since January of this year.
“After talking with a therapist for an extended period of time, it allowed me to reflect and to see myself for who I am inside,” she says. “I’m happy now, and I have no regrets about my decision to transition. I think it was the best thing for me.”
Moss isn’t reserved about discussing her life pre-transition. “I guess I would say I identified as a gay male at that time,” she recalls.
And she confirms there is a stigma attached to being HIV positive, she believes, in every community. “It’s there. You can feel it. Sometimes stronger in one community than others. “I don’t feel it as much in the trans community or in the women’s community. But I will say it was probably a lot more obvious with gay males. People lie about their status. They tell you they’re on medication, but they’re not. If they say they’re negative and you tell them about your status, they don’t want anything to do with you.”
Despite the stigma Moss has encountered, she still maintains an upbeat attitude and a good sense of humor. She chuckles when she thinks about living a life across a spectrum of the LGBTQ+ rainbow.
“I am who I am,” she says. And I know it’s a lot for some people to take in. Especially when you start looking at all those letters that identify our community now. It just keeps getting longer and longer.
“Girl, it confuses me! And I know if I’m confused about it then the rest of the world must really be confused.”
Moss is comfortable with her health and happy that she hasn’t had any health complications related to HIV. When it comes to the topic of her gender transition, she confesses she has some concern about how her family might react (she hasn’t told them yet) when they learn their former son is now their daughter.
“You know, first I came out to them as gay. They were okay with that. But I don’t know how they’ll feel about this. Sometimes I think I’m a little tired of having to come out over and over again. In the beginning it was about coming out as gay. Now I’m coming out as trans.”
She switches back to the topic of HIV: “and with HIV, I feel like I have to come out again every time I tell someone. It can be tough,” she says with an upbeat tone, “but I just got to keep doing what I’m doing.”
For younger people who identify as trans and are considering starting the process she has a few thoughts to share. “It’s a lot to go through,” she says. “And you need to be certain you’re doing it for the right reasons. Get yourself a good doctor and stay away from the black market, especially when it comes to things like hormones and breast augmentation.”
For youth who are positive and negative, she offers the following advice: “If you’re positive, stay on those meds so you can stay undetectable. That’s the most important thing you can do. If you’re negative, and you want to stay that way, be careful who you lay down with for a few minutes of fun. It may end up being a lifetime of responsibility.”
Michael Nguyen
At just 26 years of age, Michael Nguyen is the youngest of all our profiles. He was born, grew up in and is still a resident of Belmont, North Carolina (a cool little historic Charlotte suburb town just across the Catawba River in Gaston County).
Single for the past five years, he says he grew tired of meeting people on social apps like grindr and Scruff and enjoys meeting people face to face in places like where he works.
If Nguyen’s personable and sometimes comical smile looks familiar to you, there’s a reason. He frequently serves as a door person at Charlotte’s Sidelines sports bar and the neighboring dance club Argonne.
But wait, there’s more, and many sides to the exuberant young man. He’s also a music major at Winthrop College and scheduled to finish his degree December 16. He’s looking forward to utilizing his skills with the trumpet in the Charlotte Pride band.
And then there’s the subject of his HIV status, something Nguyen is primed and ready to share with readers.
“I’ve been positive for four years,” he says. “I know most people don’t respond this way, but I had no reaction to finding out I was positive. I knew that it wasn’t a death sentence. I just thought to myself that I’m part of this community now and I wanted to do something that would make a difference. I wanted to advocate. I’m young and I know I have a powerful voice.”
A look at Nguyen’s social media confirms that he is very out about his HIV status and enthusiastic when it comes to advocacy and education. In fact, he’s a wealth of knowledge and is more than ready to share information to help keep people safe and healthy.
“If you’re HIV negative it’s important to vet your hookups on the apps. People lie. And when someone tells you about their status you should take it with a grain of salt. Ask them how often they are tested. Most people now are on PrEP, but not everyone is honest about that, either. Ask your friends who might know them. Ask people who are on the apps.Talk to people and find out what they might know about this person. All of that gives you a lot of information you might not otherwise find out.”
For those who are HIV positive – and Nguyen admits he would be hard pressed to come up with others around his same age who are positive – his desire to be a resource for the community he identifies with is immediately obvious.
“Make sure you follow your treatment plan,” he emphasizes. “Work your way to undetectable status. If you miss a dose you may find your numbers changed somewhat but you can always get back to where you were and even better.
“If you’re just finding out, reach out to organizations that deal with HIV for insight and help. There are resources like RAIN and you can get involved with the AIDS Walk.
“For a lot of my life, I’ve been a bit introverted,” he says. “But now my life is more outgoing. I’m also part of the PUP community.
“I’m trying to use my pup identity to advocate for HIV issues. As a pup, and in the leather and kink communities, I think a lot of people make the assumption that just because you’re on PrEP you’re safe, but there’s still a point one percent chance you could get infected.
“That’s an issue that needs to be addressed. We exist, we’re still out here and we need your help. And don’t ever forget that just because you’re positive, you’re under valued.”
