Lessons Lived, Lessons Learned
BY Benjamin Ryan
April 27 2007 12:00 AM ET
Because physicians in the United States first noticed HIV's effects among gay men, the virus and homosexuality quickly became linked in the public mind. Through intensive efforts over the past 25-plus years to educate Americans'and the entire world'that AIDS is not a 'gay disease,' people have learned that HIV does not discriminate and that anyone can become infected.
But is it possible that good intentions, as they often do, have worked too well? While many organizations nationwide have put tremendous amounts of energy and money behind education campaigns, especially targeting young men in order to keep them aware that the virus is still going strong, today, the fact remains that more than half of all new U.S. HIV diagnoses occur in men who have sex with men. And half of new infections occur among people younger than 25'people who grew up in the age of AIDS.
The following are the stories of three such young men who are making their way in the world with HIV. For each of them, the virus is only part of the rocky path they've had to navigate in their lives. But their diagnoses have also been eye-opening experiences, teaching them lessons that the anti-HIV campaigns they grew up seeing never could have.
Taking a New Path
28 years old
Lives in Chicago
Diagnosed in 2001
The tight confines Louis Spraggins grew up in didn't provide much space for the love and support he needed. While he was in high school the ripple effect of his mother's substance abuse sent him bouncing between his aunt's house in Wisconsin and back to the chaos of his mother's Chicago digs. Eventually, he wound up in a community-supported group home.
And being an African-American teenager who was living on the edge meant not looking much further ahead in life than the edge of his feet. 'People were getting shot on the street corners,' he says. 'I didn't really think I was going to live to see 18 or 21.'
'I basically grew up with the perspective that I've got strikes against me,' Spraggins adds, 'because, one, I'm young; two, I'm black; three, I'm a young, black male (Please! Society hates us!); and four, I'm same-gender-loving.'
But Spraggins wasn't the type to simply take on this laundry list of stigmas and accept it as truth. Deeply spiritual, he worked hard to overcome two assertions he'd always heard'that God hates homosexuals and that AIDS is his punishment for their sins. 'I really could not believe that,' he says. 'I had been taught that God was all-loving.' So he educated himself about homosexuality and about HIV. He concluded not only that being same-gender-loving was natural but that AIDS was 'a human disease.'
A self-described 'goody two-shoes' kind of guy, Spraggins soon found a support network helping provide AIDS services. When he was 15 he landed a stipend position at the South Side Help Center as a peer youth case manager for pregnant and parenting teens. Soon he was traveling to local public schools to give 'HIV 101' workshops.
'I was able to learn a lot of things,' he says, 'and use what I learned to help people, to make a difference in people's lives.' He also made valuable connections with his colleagues while working at the center. 'In some ways I was looking for more family,' he says. 'They were very caring people. They provided me with very good examples, served as positive role models, and provided a lot of hope in places where I didn't feel I had hope.'
When he was in his late teens Spraggins's work with HIV prevention became even more passionate. He began working with a group called Young Men for Community Advocacy as a peer educator for African-American men who have sex with other men. At the time he became HIV-positive in 2001, he had been participating in conferences and conducting workshops about young black men who follow self-destructive paths. He says that experience ultimately helped him understand some things about his own life.
'I don't think I was realizing how much I was on that same self-destructive path myself,' he says. 'While I was teaching great information'and I truly did believe in the information that I was teaching'part of me was still feeling a lot of pain from my childhood and feeling pain about being alone. And so I took risks in order to try to heal my loneliness. I took risks because I wanted to feel. I was looking for love.' The irony that he, of all people, should get infected with HIV filled him with shame and embarrassment, he says: 'Here I was, supposedly a community leader and educator, and I wasn't always practicing what I preached.'
Today, as a treatment education coordinator for Test Positive Aware Network, he uses his own experience with HIV to help shape the message he sends to others. 'What I really got a grip on then is that we need to be patient with ourselves'because we are working through a process of change,' he says of the time after his diagnosis, 'and we're going to make mistakes.' 'I think one of the lasting things that I was able to recognize that will never change,' he adds, 'is that it's all about love. I think HIV is very much a symptom of the lack of love that we have in society. If we were ever able to get a grip on all the negative aspects that we have going on in society, I think we would be close to the end of the HIV epidemic.'
Elevating With Optimism
24 years old
Lives in Albuquerque
Diagnosed in 2006
With a mixed heritage of Italian and Hispanic, Quincy Coleman knows a thing or two about straddling social fences. Like many gay men, he weaves his way through the straight and gay worlds. He is deaf and communicates using American Sign Language but is socialized in the hearing world as well. Last year, when he learned he was HIV-positive, he found himself in a whole new category.
'I am still learning about them,' he says of the different circles that he moves among. 'It is all a part of my identity. I am proud of it.'
Although he had been educated about HIV while growing up, his diagnosis last year came as a complete surprise. 'I just sat there, shocked,' he says. 'I never thought that would happen. I was pissed, upset, angry, depressed, wishing I'd die, pushing people out of my life, missing days of work.'His shock was compounded by the realization that he had been infected by a man he once called his husband. The two had had unprotected sex a couple of times while they were together. Toward the end of their relationship, though, their sex life waned as Coleman's partner pulled away emotionally. As it turned out, the man had discovered that he himself was HIV-positive and was afraid to admit it to Coleman.
'The reason I broke up with him was that I couldn't trust him,' Coleman says. Once Coleman received his own diagnosis, though, he says it made him realize why his partner had been so afraid.
They met for lunch, and Coleman's ex-husband finally confessed the truth. While they are no longer on speaking terms, Coleman has forgiven his ex. 'I was really angry and felt betrayed,' he says, 'but I tend to be a very understanding kind of person. I just can't hate him for that.' While HIV may have driven a wedge between him and his ex, it has provided a common ground that has drawn him closer to his mother. She was recently diagnosed with hepatitis C and has been able to give him both support and guidance about living with a serious infection.
'It has helped us become best friends,' he says. 'Mother and I'we both tend to be grouchy about taking pills. We tend to be tired sometimes. And the medical bills'they are making us crazy.' Over the past year, as he has better come to terms with what it means to live with HIV, Coleman has begun to pursue healthier habits. 'After my diagnosis,' he says, 'I realized that I should start to eat well'to reduce junk foods, to drink water as much as I can.'
He's also teaching himself to cook, which is not without the occasional disaster. 'One time I tried to cook eggs and didn't put any butter or oil in the pan,' he says with a smile. 'I kept cooking and cooking.' But Coleman's attitude, he says, is 'to live and learn,' and the inspiration he gains from that outlook is evident. 'I am very optimistic about my own health issues,' he explains. 'I keep myself busy with work and with life. My mood and emotions are improving, even if it's slowly. This comes with a lot of help from my best friends and coworkers.'
The inspiration to improve on life doesn't end with himself. Coleman works for an organization called the Community Outreach Program for the Deaf, where he provides vocational and case-management services to clients who are deaf or hard of hearing. 'I am lucky to be an educated deaf young man,' he says. 'There are a lot of deaf people who are not well-educated, but I am one of the few deaf people who can handle some of the more difficult decisions [because of my education].'
And he's putting both his education and his firsthand experiences to good use. He has already educated several of his clients specifically about HIV issues and is working with his supervisor to set up a curriculum for a formal tutorial about the subject.
Finding His Voice
S. Brian Bufford
23 years old
Lives in New York City
Diagnosed in 2002
S. Brian Bufford belongs to an emerging generation of young HIVers who are so unfamiliar with the early days of the epidemic that when he excitedly cites the phrase 'Act up! Fight AIDS!' he is thinking of a line from Rent and not the slogan of the activist group ACT UP, formed when he was only 3 years old.
Now 23, Bufford is in a postcollegiate lull as he makes an effort to live on unemployment insurance and allows himself the luxury of reading not just for pleasure but for self-discovery. An aspiring poet who is bubbling with creative ideas and ever-evolving plans for the future, he sees himself reflected in a wide array of literature, philosophy, and pop culture: Ren' Descartes, Michel Foucault, Mark Doty, June Jordan, Cornel West, Nikki Giovanni, and, of course, Rent.
One of his favorites novels is Paulo Coelho's The Alchemist. 'It's the story of a boy who leaves a small town in search of gold and along the way finds out that the gold is the actual journey,' Bufford says. 'I'm like, Wow, I could definitely learn this lesson for myself.'
How is alchemy relevant to his experience? 'It's constructive,' he says, 'instead of the opposite'destructive.'
Bufford has made quite a constructive journey. He found out he was HIV-positive when he was 19, and that discovery led him to attempt suicide. After graduating with a degree in English from the State University of New York at Buffalo, he made the leap to New York City. He was searching for better employment opportunities and broader options in HIV care and services as well as more people his own age who also have the virus. He has long struggled with depression, something he considers 'almost an opportunistic infection' related to HIV. 'On bad days,' he says, 'it's almost like an iron curtain.'
While some people get lost in the lonely rush of the big city, Bufford says he has been able to find connections to help him cope. He has taken advantage of support groups at places like Gay Men's Health Crisis and the Callen-Lorde Community Health Center. He likes the energy of the urban crowds'watching people on the subway or hanging out at Starbucks in Chelsea. 'Here, if I need to reach out and get a hug'a physical hug'that's possible now,' he says of the new friends he has made. 'Whereas, in Buffalo the day I tried to kill myself, I told someone where I was, but he didn't look for me.'
Another of his favorite books is The Perks of Being a Wallflower, by Stephen Chbosky. 'One of the characters says to another character, 'The love you accept is the love you deserve.' And that's just where I am right now. Either I can take what's given to me, or I can say, 'This is what I want.''
This outspoken attitude toward self-empowerment recently lost him a job he held as a paralegal. It had come to his attention that his boss was carrying on an affair with two different women in the office. Bufford was led to believe that his boss wasn't practicing safer sex with these women. The dynamics of the situation struck too close to home, and he began to have anxiety attacks, worrying that someone would become infected with HIV. Eventually he told his boss what he knew and how he felt about the situation. Bufford wasn't able to keep his job, but he says he doesn't regret speaking his mind.
He has the same unapologetic attitude in the way he talks to his 16-year-old sibling about sex: 'I'm like, 'You'd better not be having sex. But if you are, you'd better be using a condom.'' Bufford says he feels this role is important because he didn't receive any significant education about HIV prevention while growing up.
Meanwhile, he's doing his best to take care of himself, even if it means a fight. The first doctor he saw in New York City said he wouldn't allow him to stay on his drug regimen because it was too expensive and he didn't have health insurance. 'That's costing the taxpayers a lot of money,' the doctor told him. 'I can't do that.' Bufford didn't hesitate to find a new doctor.
'I guess the best way to describe it is the whole Rent idea'the 'No day but today' thing,' he says of his attitude toward life, citing the musical's live-for-the-moment slogan.
He says he tends to be more like the character Mark, who is actively trying to exercise his creativity. On the other end of the spectrum, another main character from Rent, Roger, broods at home and can't find his creative spark.
Which isn't to say that Bufford is immune to moping around. Looking down at his pair of blue checkered pants, which are evocative of Roger's bohemian style, he reflects, 'I definitely did go through a Roger phase.'