While activists fight to make sure HIV is no longer thought of as just “a gay disease,” it’s easy to forget that gay and bisexual men were, in America at least, the first to contract HIV. Many of those who survived decades while positive have become leaders in the fight for awareness, prevention, and a cure. We caught up with four long-term HIVers—all gay men that have been positive for over two decades—who are doing incredible things for the rest of us.
James Vellequette: left who was an openly positive model, in 1994; right, James today
Associate director of the Condom Nation Tour in Los Angeles
When did you first find out you were HIV positive?
November 27, 1990, at the Red Lion Hotel in Orange County, Calif. I was infected on Octboer 3 by a guy I was seeing at the time, and I experienced a dramatic seroconversion that started on October 16. My doctor, who had tested me negative in August, tested me again in mid-November and told me that I was just barely positive. Apparently there were just a few P24 and other key proteins showing up on the test panel, but enough to agree with my recent illness for him to deduce that I had recently contracted HIV.
As I had been through such a rough time, he invited me over to his house for Thanksgiving dinner and some events at the beach over the weekend in Newport Beach, and then told me on the Monday after Thanksgiving at the conclusion of a community event dinner held at the Red Lion Hotel. I will never forget the name of that hotel. Not even sure it still exists, but I know where I was sitting at that moment and the look on his face when he told me. I was stunned.
At the time, did you think you’d be able to live the life you’ve lived with HIV?
Well, I don’t know if I had a real “life-plan” that I had to give up, since I was only 24 and floundering a little in determining my life goals, but with regard to my overall longevity, it was not looking good and I fully expected to be dead by 1998 at the latest.
You say you’d make a lousy gay stereotype—but there’s a real issue behind that.
Yes, I can’t dance, sing or put together colors or an outfit so I’ve often felt like I never fit in with the core of the community that gets all the attention. Also, I am gay and fully accepting of who I am without shame or question, but gay rights has never been an issue that I have been involved in. Once I started doing HIV advocacy work, I decided that I needed to focus on one or the other, but I could not do both or my split focus would undermine the quality of my effort. I figured that there were enough HIV-negative people to carry the gay rights banner.
Do you have a partner or spouse? Are they HIV+?
I have been seeing a guy for a year who is also HIV-positive. My two previous partners—both about five years—were negative. I have been in mostly serodiscordant relationships over the last 22 years.
What has been the biggest surprise about having HIV?
That I am still here. Not all HIV is the same. Sometimes you get a little cold, or a big bad cold, and my virus seems to be a sturdy one. I got my AIDS diagnosis in only three years from infection, and things were not looking very good and thus I had to go on disability from McDonnell Douglas Aircraft in Long Beach, Calif., where I was the scheduler in charge of coordinating sub-assemblies from our international partners. As we get older we care less about what people think about us. I hit that phase earlier than a lot of people do because I live with a quiet ticking noise in the back of my head thinking that I am always running out of time.
Do you worry about getting older with HIV?
I fully expect to die at any time some days, and I do not mean that with any sense of drama. The medications that keep me alive are also toxic, and we know that in my gut, where the virus lives and thrives, that my cell structure is aging at a rate quicker than someone who is negative. I am fine with all of this—it is a fact of medical science so I simply appreciate all of the extra time that I have had and value every year I can tick off is another blessing.
At some point in the last 20 years, my friends stopped dying of specific HIV-related issues and more of them just started dying in their late 40s and early 50s of heart complications and other non-HIV diseases. For those of us in the battle long-term, we knew what it was the long-term affects of the drugs and the virus. That is who is dying of AIDS today in the U.S.
So many gay and bi men died of AIDS complications in the ’80s and ’90s. How did that impact you?
I found out I was positive in 1990. There was no one there to “show me the way” as a 24-year-old living in Los Angeles with the virus, which was stunning eight years after [AIDS was discovered], so I started a support group in 1994 through Being Alive L.A. and the L.A. Gay and Lesbian Center called Positive 20s. Over the course of the seven years that I ran the group, and along with all of the people that I had met doing my advocacy work and doing lots of public speaking about living with HIV, I wrote down the names of 106 friends on my “goodbye” list—and then I just stopped counting, but that did not stop the dying. I just could not write down any more names. To this day I cannot visit that NAMES Project AIDS Memorial Quilt even though I was less than 100 yards from it at the National Mall this summer.
I consider that time, from 1990 to 1996, as my own personal Vietnam, where I just experienced so much loss that I grew numb in order to function.With the arrival of protease inhibitors in 1996 I went on a tough combination, but it turned my numbers around and I went back to school to get my bachelor’s degree from Santa Monica College and the University of California, Los Angeles.
What don’t people realize about HIV?
That it is real part of their lives. That it is easier to get if you are not on your game and thinking smart all the time about where you are putting things into your body, whether it is sexual or drug-related. People think that someone with HIV is going to have a sign on them that warns them so that when that time comes, they will play extra safe with them. Lots of pretty people with stunning bodies have HIV. More than 20% of the people with HIV do not even know that they have the virus, so how can those people protect you if they do not even know themselves?
Read more about James’s life at Condom-Nation.tumblr.com.