On June 5, 1981, the Center for Disease Control’s Morbidity and Mortality Weekly Report (MMW) reported the first case of the illness that would become AIDS.  A month earlier, Dr. Lawrence D. Mass, co-founder of the Gay Men’s Health Crisis, published an article in the New York Native about the then-mysterious disease.

Before late 1982, it was called the “gay cancer,” “gay plague,” GRID (Gay-Related Immunodeficiency Disease), KSOI (Kaposi's Sarcoma/Opportunistic Infection) syndrome and “community-acquired immune dysfunction.”  It would take several years before researchers discovered that the Human Immunodeficiency Virus or HIV causes AIDS. 

In the quarter-century that followed, a marginalized, feared and sometimes despised segment of American society almost single-handedly forced the country to face a disease that would eventually claim millions of lives world-wide.  

Just a few years before the emergence of AIDS, the closet had become a bad thing.  Gay men were taking control of their sex lives and learning to live proudly. 

This pride was put to a cruel test when the gay community was faced with a formidable and unfamiliar enemy.  For some, the disease would erase years of progress in social acceptance.  Others went from flamboyant to fierce—taking up the battle call in protests, in the press and in medical establishments.

The amazing part of the epidemic was the reality that very sick men—often emaciated with wasting syndrome or branded with the purple marks of KS—along with their partners, mothers, siblings and friends, were advocating for themselves and future generations—alerting the city, state, nation and world about this deadly disease.

And yet, countless gay men continued to be left alone.  African-American men were often without access to care and resources.  Many languished alone—not leaving their apartments or daring to seek medical attention.  Some gay men were disowned, completely ostracized by family and friends alike and left to die virtually alone.

Today, that history is but a memory for most.  With the advent of the AIDS cocktail in 1996, long-term survivors are no longer miracles.  With the eventual response of local, state and federal governments, gay men with AIDS don’t always die in poverty.  With the support of lesbians and a stronger gay community as a whole, people with AIDS are living and loving longer.

There are different reasons to be concerned, of course.  The incidence of HIV among African-American men who sleep with men is on the rise—as is the rate of infection among African-American straight women.  Old-timers are concerned that the younger set is complacent.  Funding for economic and medical support as well as pharmaceutical research is flat or lagging.  Entire countries on the African continent are shrinking in population due to AIDS-related deaths.  And the heterosexual community—including teenagers, drug users and married women—is at a greater risk than ever before.

AIDS is still a terrible foe. Today’s advocates can learn from the courageous activists, patient brothers, and triumphant survivors of the last 25 years.  Here are a four of their stories.

Lynda Dee is a study in contradictions.  In a bright pink floral top, white slacks and tiny, pink, strappy heels, she looks more like a doctor’s stay-at-home wife than a downtown attorney.  She sits behind a massive desk, rolling in her chair from one side of a credenza to another—faxing documents, checking e-mail and making quick phone calls.  She hardly notices the view of Baltimore from her 23rd floor office.  A storm is rolling through, and lightning cracks open the late afternoon sky, while clouds sit atop church steeples and skyscrapers.

She remembers the early 80s in the same rapid-fire fashion that she conducts her work.  Clicking off the names of opportunistic infections that now sound like ancient afflictions—Pneumosystis carinii Pneumonia (PCP), Kaposi's sarcoma, toxoplasmosis of the brain, Cytomegalovirus (CMV), Progressive Multifocal Leukoencephalopathy (PML)—she recalls the ugly truths of life in Mt. Vernon at the beginning of the AIDS crisis.

“I know people who have helped their lovers commit suicide,” she says.  “I know people who had diarrhea until they died.  People went blind.  I remember when people took three pills a night and had those buzzer things to wake them up.  I watched friends of mine die from brain cancer, get PML, get toxo.”

These were the bad old days when the president wouldn’t utter the word AIDS or HIV, much less give funding to a disease that was killing gay men by the thousands.

“It was really abysmal,” she says.  “There were few services [for people with AIDS].  People were presenting with full-blown AIDS.  It was very hopeless, helpless.  It wasn’t only a death sentence, but you got very sick, really quick.”  She snaps her fingers for emphasis.

In polite company, Dee wouldn’t call herself a fag hag.  She attended the University of Baltimore and found her community in Mt. Vernon.

“I partied in the neighborhood, went to school in the neighborhood, had friends in the neighborhood.”  That’s how she met the dozens of gay men she loved so much—the men who became sick and drew her into AIDS activism.

In 1982, she moved to New York City, where she first heard about AIDS.  She married Barron La Field in 1984 and moved back to Baltimore.  Two years later, she was separated and her husband was diagnosed with AIDS.  Those days were horrible, she says.  Her husband was hospitalized in the AIDS ward at Johns Hopkins nine times before he died in 1987.  

But those tumultuous years were when she, Pat Moran and Garey Lambert founded AIDS Action Baltimore.

“We met in my office,” she says.  About a half dozen folks met every week to distribute the money they collected at fundraisers throughout the city.  Their first fundraiser was the screening of an AIDS film at the Charles Theatre—she no longer remembers the name.  After that, it was one drag show after another, raising about $2,000 a week.

“We had benefits at the bars,” she says.  “We had a dog and pony show every week.”

Every penny went to people with AIDS.  The group paid for prescription drugs, rent, utilities and more.  “We’ve bought people teeth and air conditioners.  But mostly, we paid for the basics.” 

At the time, AIDS was not only a death sentence but also a sometimes-unbearable stigma—an enormous scarlet A.  Gay men were afraid to disclose their status, use their insurance to cover treatment costs or even seek care.

“People were stuck in their jobs,” she says.  “In those days there was no American’s with Disabilities Act, and people could get fired for no reason.  Ugly.  It was ugly.”

The more services she helped to offer, the more outspoken she became.

“We started out doing benefits,” she says.  “And the more organized we got, the more political we got.”

Soon, Dee recognized that working with research and government agencies was crucial.  She began with the city and then moved to the state and finally the federal government.  She got involved with the drug approval process.  She was the first layperson permitted to attend a confidential meeting between the FDA and a drug company to discuss a drug approval application.  She’s aggressive and a good administrator, she says.  Being a lawyer didn’t hurt either.

“I think for many years, I was extremely fierce and difficult to get along with because of my anger,” she says.  “My anger at the grief.”  That’s true for others, she thinks. 

“In the older days, there was a lot of survivor’s guilt,” she says.  But time heals.  “Given the death all around me, I thought it was my responsibility to do something.”

In 25 years, Dee lost more than 100 good friends to AIDS.

“I usually make friends for life,” she says.  “And there’s not a month that goes by that’s not an anniversary of someone’s death.”  More than 100 anniversaries.

Carlton Smith

“I was a member of the 4-H Club.” 

Carlton Smith isn’t talking about head, hearts, hands and health.  It was 1982, and 4-H Club was slang for the groups that were at most risk for contracting AIDS:  heroin users, Haitians, hemophiliacs and male homosexuals.   

When Smith was diagnosed, he wasn’t told he was HIV positive or had AIDS.  Smith had finished college and decided to enlist in the Air Force.  After his physical exam, he received a letter asking him to report to the chief medical examiner.

“At the time they called it GRID—Gay-related Immunodeficiency Disease,” he says.  “There was no counseling prior to testing.  They just told me.  I was told I had five months to a year to live.  No on knew what my CD4 count was, what my viral load was.”

He was told he had this mysterious disease and then sent home—confused and scared.

“At the time, I did think it was a death sentence,” he says.  “I was frightened.  I felt like Richard Wright’s The Invisible Man.”  GRID was also a white man’s disease, he thought.

 “Many of my peers [African-American gay men], like myself, thought we were safe because we didn’t deal with white men in that way,” Smith says.

In his early 20s, Smith wasn’t out to his parents or many of his friends.  He says he didn’t have the resources that white gay men had.

“I wasn’t in the know,” he says.  “I wasn’t familiar with any doctors who were in the know. The race barriers prohibited me.  My information came from people I knew.”  And he says that the black community at the time didn’t know a whole lot.  He couldn’t find the support that he needed, and he wasn’t ready to talk about this positive status with many people.

“Because of that, I wore mask, masking my feelings, my emotions,” he says.  “It caused me to drink heavily, use recreational drugs.”

His lowest point was when he had no T-cells.  He didn’t leave his house or talk on the phone.

“I wouldn’t say nothing to nobody.”

He left Baltimore in 1986 and returned in 1992.  His two best friends died before they were 30 years old.  He was going to funerals three times a month.  Even though he had never been hospitalized for an AIDS-related complication, he was as lonely and depressed as ever.

“It was difficult as a minority, because you were not privy to a lot of information,” he says.  Then he went to the Moore Clinic to see Dr. Gallant.

“He told me, ‘I have ways to help you live, if you want to live,’” he says. 

At 30 years old, he came out to his parents.  His father resented his being gay and blamed his mother, but she was supportive.

“She didn’t reject me,” he says with tears in his eyes.  “She just held my hand.  That was after seven years knowing I was positive.”  Seven years after being told he would be dead within 12 months.

“Part of you wants to be accepted and feel the love,” he says.  “The other part of you knows you’ll still be rejected because you’re positive.”

Smith says he continues to walk that tightrope in the African-American community.   Black men are often assumed to be anti-gay.  He looks at the groundbreaking AIDS movie Philadelphia as an example of the stereotypes—white men have AIDS and black men are afraid.

“It’s a stigma that causes a lot of death in our community,” he says.  As a result of the stereotype, many African-American gay men are not open about their HIV status. 

“Sometimes I feel we have become very complacent” in the black community, he says.  “Why aren’t we screaming?  Why aren’t there major groups talking about this?  We’re disposable, that’s why.  We have so much homophobia in our community.”

Today, he credits the grace of God and his friends for his survival.  His strong physique and striking good looks belie his age—43 years old—and status. He’s not a victim, he says emphatically.

“I’m a person who is HIV empowered and I am not a victim.”  His smooth face breaks into a wide grin and his eyes twinkle.

“I am victorious.”

Steve Yeager

Queen’s “Under Pressure” is playing over the loud speakers at Donna’s in Charles Village.  Freelance filmmaker, Steve Yeager removes his sunglasses, carefully places them in a case and puts on his regular specs.  He butters a bagel and sips coffee from a paper cup. 

“I was thinking about Tom recently and how much I miss him,” he says.  “I was thinking, wouldn’t it be great to introduce him to my girlfriend now.  He would have liked her.”

Tom Yeager was Steve’s younger brother.  They weren’t close for about eight or nine years, but after Tom got sick, Steve spent two years trekking between his home in Baltimore and Tom’s trailer in Rehoboth. 

He doesn’t know exactly when his brother was diagnosed with AIDS, but by the time he died in 1996, Tom’s 5-foot-11 frame was a mere 85 pounds heavy.

“He looked like a concentration camp victim,” he says   His nurses wanted to move him to a hospice, and Steve took a tour of the place.

“I said, let me talk to him and see what he wants.  Tom would be lucid one moment and not the next.  At one lucid moment I said, you tell me what you want.  He said, ‘I don’t want to go to a place like that.  I know I’m dying and I want to be at home.’”

A few weeks later, Tom was gone.  Steve had traveled back to Baltimore to take care of a few things at home.  One of Tom’s nurses called to tell him that he had died.

“If Tom had lasted another year and a half, he would be alive today,” he says, very matter of fact.  Protease inhibitors and combination therapies (cocktails) had come out just after Tom’s death, too late to save him.

Steve went to both memorial services for his brother—one in Rehoboth with Tom’s friends, the other in Baltimore.  He had gotten to know his brother’s friends pretty well in the two years Tom battled full-blown AIDS.

He looks over a computer-printed photograph of his brother’s quilt panel—the Names Project panel that Steve and five of Tom’s best friends sewed in 1996.  The low-resolution photograph is fuzzy, and he can’t remember what exactly what went on the 3-by-6-foot piece of fabric.  He remembers discussing how to balance the two white pieces on either side and being adamant that a rainbow flag be included.  He’s almost positive that the name of his brother’s hair salon—A Touch of Class—is embroidered in the top right corner. 

And then, suddenly, he tears up.  Removing his glasses, he covers his eyes with a paper napkin.  With his head bowed, his shoulders shake with quiet sobs for a few seconds, and then he looks up again.  He’s surprised by his reaction and apologizes.

“I didn’t want him forgotten,” he says.

He thinks it was his girlfriend at the time who first suggested that he do an AIDS quilt panel.  During a game of horseshoe at Tom’s trailer, he mentioned the idea to his brother’s friends.  It was never a question after that.

“We all became a part of this—yes, let’s make this happen.”

For three weeks, Steve drove back and forth again between Baltimore and Rehoboth, staying at Tom’s trailer for days at a time.  The six men—five gay, plus Steve—worked at a large sewing table at one of the fellow’s houses.  Drinking dirty martinis—Tom’s favorite cocktail—and grooving to Motown—Tom’s favorite music—they chose fabrics and designed the last symbol of their friend and brother’s life.

“We really worked night and day,” Steve says.  “We had this big table where one guy—who was a tailor—cut fabric.  We kept mixing and matching.  In a way it was a celebration of Tom’s life.  Yeah, we were upbeat about it.  They really loved Tom.”

They got Tom’s panel to the Names Project just a week before the deadline for the quilt’s last display on the Washington D.C. Mall.  The six of them gathered in D.C. to see it along with thousands of others.

“I remember we all were just standing there looking at it,” Steve says.  “It was a combination of emotions—the elation that we got it done.  It was sad because it really brought to an end my relationship with them.”

Three years ago, Steve was sitting on a beach at Rehoboth when a fellow tapped him on the shoulder.  It was one of Tom’s friends.  They said hello and updated one another on their lives.  The man’s partner—the tailor—had passed away from AIDS.  The two said goodbye and went their separate ways.

“I wonder now how many of those five are still alive,” he says.

The conversation encourages Steve to go through the boxes of Tom’s things in his basement—to find photographs of the six of them building the quilt panel.  He has a video of his brother that he wants to view again, and it’s frustrating to him that he can’t remember the name of Tom’s tailor friend.  It’s been ten years since his brother died and the group finished the panel.

“Tom lived well and died well.  I’m glad I spent that time with him.”

Randy Watkins

For Randy Watkins, coming out is a two-part process.  First he tells people he’s gay—if they don’t already suspect.  With a dancer’s physique, his hair trained back from his face in locs and showing perfectly shaped eyebrows, Watkins talks with his hands—his oval nails aren’t painted but they’re long.  He was just named Mr. Club Bunns for 2006-2007 and is a model for Coppin State University.

“I’ve been out since I was five,” he says, casting his eyes upward as if he is stating the obvious.  “I’ve always known I was gay.”

He found out he was HIV positive at a young age, too—and that’s the second part of his coming out process.  Not as many people are aware of his status, but he has lived with the virus for 12 years—since he was 14, almost half his 26-year-old life.  He found out after a former partner died.

“I took like a hundred HIV tests,” he says.  “I didn’t believe it.  I just cried and cried and cried.”

It’s not hard to imagine how difficult it was to deal with such a thing at that age.  He was a good kid, a good student, enrolled in the dance program at the Baltimore School for the Arts.  He told his grandmother first, who was supportive.

“She knew I was gay,” he says.  “She knew I was gay when I was little.”  His parents and older brother were another story.

“I got really depressed because my mother and father at the time didn’t understand,” he says.  “The gay thing first—and then the HIV thing they really didn’t understand.”

A year later, he dropped out of school, and began selling drugs to get by. 

“That’s what I had to do to make it,” he says.  “That was one of the tools I had to survive.”  At the time, survival wasn’t about avoiding opportunistic infections.  It was about learning to accept himself—as a gay, HIV positive teenager.  He did survive and is now on a completely different path.

In 2004, he earned his GED and today, he is in his sophomore year at Coppin State University, majoring in nursing and minoring in arts and humanities.  He plans to graduate in 2010 and seek a career in the Peace Corps, as a director for international nursing. 

“I like helping people,” he says.

Watkins came out to his classmates and professors recently.

“They took it well,” he says.  “That just shows how a lot of educated, mature people are comfortable with it.”  But that’s not always a given.

“A lot of time, you can’t talk about HIV with someone who’s not HIV positive,” he says.  “When you’re HIV positive, it’s kind of a brick wall, because others don’t have to get up and take pills everyday.  They don’t have to worry about their T-cell count or viral load.  They don’t have to worry about sex or if a condom will break.”

This is one of the reasons that Watkins is a peer teen educator with Bright Health and Wellness, formerly known as the Baltimore Pediatric HIV Program.   He does speaking engagements and offers support to teens facing their positive HIV status.  Not all members of the group are gay—some were infected by blood transfusions, unprotected straight sex or sharing IV drug needles.  Still others were born HIV positive, having gotten the virus from their mothers in utero, at birth or through breastfeeding.

“There are always going to be misconceptions,” he says about the public’s understanding of HIV and AIDS.  “Some people still think that you can get it from breathing, eating from the same fork, kissing.”

And being HIV positive hasn’t gotten much easier for some gay men.

“A lot are HIV positive, but they don’t want to get treatment because they’re afraid of what their friends will say. They’re worried that they’ll be seen coming out of a treatment facility or something.”

But in the 12 years since Watkins learned he was HIV positive, he’s managed to accept his status in a very different way.

“I see HIV like a cold,” he says.  “You just have to take care of yourself.”

His mother has also slowly come around.  When he was first diagnosed, she took him to all of his doctor’s appointments.  They did the AIDS Walk once.  It took her a long time, but today she has a better understanding of HIV and AIDS.  That’s due in no small part to Watkins’ persistence.  He stuck with her, a decision that seems obvious to him.

“I had to.  I love her.”

But dating is another story.  At an age when most people are looking for true love, Watkins is no exception, but his status complicates things.

“It’s hard to disclose to people [that I’m HIV positive] because a lot of people don’t want to deal with it,” he says.  “People say, ‘I understand and I can deal with it.’  But then they can’t.”  They worry about contracting the virus, he says.

It’s a difficult balance to strike—living a healthy, active life with a virus that continues to stigmatize.

“I’m a person before HIV,” Watkins says.  “HIV is such a small part of me.”

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