Man comes to terms with AIDS after 27 years

An AIDS ribbon displayed on National AIDS Day. While many people lose their lives from AIDS, Michael Stone has lived with the disease for 27 years.

Michael Stone staggered to his apartment late at night, unlocked his door and trudged to the bathroom. He looked into the mirror, and saw an image that would change his life. His face had been partially paralyzed by several small strokes caused by cocaine abuse. His nose was caked with powder, and his whole body was coated in sweat.

He was living with AIDS, and he was trying to kill himself. He knew he had to stop.

“Something inside of me said, ‘This has got to give,’ ” Stone said. “I don’t know if it was a higher power, but something said, ‘There’s a better life for you.’ ”

Since that night in February 2006, Stone has cut off the use of drugs and alcohol. The 53-year-old Fresh Meadows, Queens, native was diagnosed with AIDS in 1983. Although he’s lived with the disease for 27 years, he said he’s only recently come to terms with what living with AIDS means.

“I would run from club to club, doing cocaine, drinking and, if a little weed came a long, that’s OK, too,” Stone said. “I think subconsciously I was trying to kill myself.”

Stone knew how to run from reality. He had mastered the technique in the early ’80s, when he convinced himself that he didn’t have HIV or AIDS, even after he developed thrush on the inside of his mouth. The infection is often a telltale sign of HIV contraction.

“My doctor kept telling me to get tested and I said, ‘Why bother? There’s no cure,’ ” Stone said. “In the back of my mind, I knew something was wrong. But if I found out I had the disease, then what’s going to happen?”

After several months of prodding, Stone’s doctor convinced him to take an HIV test. When the results were in, his doctor gave him the news over the phone.

“All of a sudden, I felt like a big disease,” Stone said. “I felt like a bomb around people.”

Michael Stone tells the story of how he first found out he had AIDS.
michael stone AIDS phone call

Stone’s doctor told him he had a T-cell count of seven. T-cells are used as an indicator of a person’s immune system. The lower the number of T-cells, the more damage the HIV virus has done to the body. Anyone with below a 200 T-cell count is considered to have AIDS.

“My doctor told me, ‘I can’t believe you’re still walking around,’ ” Stone said. “She let me know that I was very lucky to be alive.”

Stone was diagnosed just after doctors were starting to realize that AIDS was infectious.

Dr. David Posner worked at Lenox Hill Hospital on the Upper Eastside in the early ’80s. In 1982, the disease was known as Gay-Related Immune Deficiency, an ailment that continually perplexed Posner and his colleagues. What was at first a fascinating disease quickly turned into a devastating health crisis when AIDS started killing thousands of New Yorkers.

“It started to devastate the gay community,” Posner said. “People would die within a year or two of their diagnosis. It was a holocaust of death.”

Stone survived when AIDS was at its most lethal. He started taking a drug cocktail that kept the disease at bay while he continued to abuse drugs and alcohol. He also maintained a steady job, dressing windows at Lord & Taylor on Fifth Avenue in the Fashion District.

But Stone could not chase away his demons. Although AIDS had not claimed his life, Stone knew the disease would always be a part of his existence. That helped him justify his drug abuse.

“I felt like, if I die, fine — I die happy,” Stone said. “There’s no cure, so what’s the point?”

Stone also struggled to gain acceptance from his family. Other than his father and one of his three brothers, Stone said his relatives have not been supportive of his gay lifestyle. This is particularly true of Stone’s mother.

“She has a real problem with this whole gay thing,” Stone said. She always has, “since I was in 7th grade.”

In 2000, Stone broke both of his heels trying to get into his apartment on the second floor after he forgot his keys. He knew there was cocaine inside the house and his desperate need for the drug got the best of him, he said. He climbed to his window, but he couldn’t pull himself inside the apartment. He dangled, helplessly, until he finally decided to drop to the ground.

When he was released from the hospital, Stone’s mother offered to take him in and care for him at her home in Kew Gardens, Queens. Stone said he hoped his time at his mother’s house would help the two reconnect. But it turned out to be disastrous.

Although he was confined to a wheelchair, Stone said his mother refused to help him with chores such as cooking and washing the dishes. The two often bickered. Once when his nephews visited the house, Stone said his mother accused him of trying to give them AIDS.

“It was the worst experience of my life,” Stone said. “I don’t think any parent should treat their child that way.”

Stone points to his mother’s behavior as a sign that the stigma around AIDS and HIV is alive and well. He mentions a conversation he had with a nurse six months ago as further proof of the cloud that hovers over the disease.

“She saw on my chart that I had AIDS and she said, ‘Oh, that’s too bad. You seem like such a nice person,’ ” Stone said. “I was like, oh, what? Only bad people get AIDS? The stigma’s not as bad as it used to be, but it’s still there.”

While he said he would never automatically label a person with AIDS as a “bad person,” Posner said people must exercise personal responsibility to avoid contracting the virus.

“This is a disease that can be wiped out with behavioral changes,” Posner said. “A kid who’s 18 years old won’t take the same precautions as someone who was around when the epidemic first broke out. They weren’t there, so they don’t know how horrible it was.”

Dr. Monica Sweeney, assistant commissioner of the city Health Department’s Bureau of HIV/AIDS Prevention and Control, echoes Posner’s sentiments. She said the city’s health department must continue to work to educate people about safe sex. But, ultimately, it’s up to individuals to kill the disease.

“The government can’t be in the room with you to force you to put the condom on,” Sweeney said. “It’s not the government’s job to make that decision.”

Francisco Roque, director of community health at Gay Men’s Health Crisis in Chelsea, said an emphasis on individual choice makes it more likely for people to blame HIV on the people who carry the virus.

“People have a tendency to say, ‘What’s wrong with this person, or what’s wrong with that group?’ ” Roque said. “They say the information about AIDS is out there; condoms are available. So where’s the disconnect? Why are people engaging in risky behavior?”

Roque said the spread of HIV has as much to do with people’s social networks as anything else. For example, one in 10 gay men in New York have HIV.

“So simply by being a gay man living in New York, your chances of contracting HIV are higher than, say, a straight male,” Roque said. “It has to do with the social pool you’re swimming in. Some pools have greater instances of HIV.”

Roque said he’s had many conversations with people who can’t understand how people who now have HIV could behave so irresponsibly.

“I try to turn the conversation around and ask, ‘Have you ever had unprotected sex?’ ” Roque said. “Nine times out of 10, the answer is yes. Then I say, so what’s the difference between what these people are doing and what you’ve done in your life?”

Promoting safe sex is key to stopping the spread of HIV, Roque said, but so is irradiating the stigma that surrounds the virus.

“We have to address it so that people feel comfortable talking about HIV,” Roque said. “That way, people will realize the virus is in their social networks.”

Stone said dialogue is key to stopping AIDS in its tracks. That’s one of the reasons he started working at the AIDS Center of Queens County four years ago, shortly after the night he decided to quit drugs and alcohol.

Stone talks about how he battle back from two decades of drug and alcohol addiction.
michael stone recovering from addiction

“I tell people my story,” Stone said. “I let them know they’re not alone.”

Stone talks to people as much for his own good as for theirs. He said sharing his experiences has helped him stay sober and come to grips with his disease.

“Now I think of it as just something I have to be aware of and take care of,” Stone said. “It doesn’t mean my life is over. I just have to pay careful attention to my health.”

At 53, Stone must also contend with other health issues besides AIDS. He takes medicine for asthma and allergies. He also takes vitamins for energy, because he said the virus can sometimes leave him feeling exhausted.

“You sort of play this game where you think, ‘Is my back hurting because of the virus, or is it hurting because I’m 53?’ ” Stone said. “We all change, but it’s part of getting older as much as anything else.”

Stone explains what a day in his life feels like.
michael stone day in the life

Stone said the cocktail of drugs he takes to combat HIV has had relatively minor side effects such as stomach cramps and unusually vivid dreams.

“If I lay out all my medications and think about all the stuff I’m taking, I get depressed,” Stone said. “But I have to think of these medicines as my life force. If I don’t take them, I won’t exist anymore.”

Stone talks about how he came to terms with taking his AIDS medication.
michael stone coming to terms with the medicine

Stone said he reminds himself how fortunate he is to still be here after living with AIDS for 27 years and enduring more than two decades of drug and alcohol abuse.

“I know I’m very lucky to be alive,” Stone said. “I’m not sure why I’m still here, but maybe it’s so I can help people who are going through the same things I’ve experienced.”