{ how has your life been touched by AIDS? }

I met Cara in 1992. She was 4 years old and she had AIDS.

Cara and her mom were speakers on an AIDS panel that I helped to organize every few months on my college campus. In 1992 there was still a lot of misinformation about AIDS, and the fears and prejudices that surrounded the disease were extreme. People still talked about the "gay plague" and a lot of people thought of AIDS as a punishment for promiscuity. Back then we thought AIDS was mostly a disease that struck homosexuals and IV drug users.

But then there was Cara, this tiny, adorable, cuddly self-appointed spokes child for AIDS. While her mother and the other panelist would talk and answer questions, Cara would travel the audience from lap to lap, making friends with strangers, introducing them to the innocent face of AIDS. I would watch her, watch the faces of those she touched, and see transformations.

I recall one man addressing the panel to voice his opinion that AIDS was a warning from God about the consequences of sin. He asserted that although there were innocent victims, the disease always sprung from someone's sin. He had addressed Cara's mom in particular, pointing out that although she and Cara were innocent, they got the disease from Cara's dad, who had been an IV drug user. Somehow, to him, this justified their affliction. God's punishments are far-reaching.

Shortly after the man sat down, Cara found her way to him, and eventually, into his lap. I watched the man's face go from disgust to fear to curiosity to joy in under five minutes. Cara had that kind of gift; it was magic. How can a person go on hating and fearing AIDS when faced with the innocence and sweetness of a four-year-old girl in their lap? I can't say that Cara changed his mind, but I am certain that she changed something in his heart.

In 1992 people who were sick from AIDS almost always died from it. Cara had been sick quite a few times. So had her mother. Her father was already dead.

It's 10 years later now and I wonder what happened to Cara. She would be 14 now. I wonder how old she got to be. Remembering Cara still caries the power to touch me that she carried back then, and I am so glad that I had a chance to know her when she was four and magical.

Dawn Bustanoby  1 Dec 2002

     

     

Thomas William Pecoraro
1958-1991

My friend, my companion, my partner in adventure.

After 8 years of living with HIV, he began to suffer chronic diarrhea. This is not how people imagine death. Writers talk of someone who's been shot, the way he bleeds, using the blood as a metaphor for his life flowing out of him. Tom was shitting himself to death.

The doctor installed a feeding tube in his chest. A service delivered big bags of white liquid every day. They looked like coconut milk, but they had been formulated to prescription for the exact nutrition he needed. At night, Tom hooked the bag up to an IV stand and inserted a clean tube into his chest. The white liquid flowed into him all night long. He was supposed to be taking in 3000 calories a night, but he was still shitting it out every day.

He felt full and bloated. He gagged when he tried to eat regular food. And he got thinner and thinner. Friends came every day, but he couldn't stay in his own home much longer like that. Another friend invited him to come to his apartment for a while, his apartment on the tenth floor. After the friend went to bed, Tom walked out onto the balcony. He stared at the full moon over the Hollywood Hills. Then he climbed up to the railing and jumped.

I'm glad Tom's life ended with flying free under the full moon and not just with shitting.

Camille  1 Dec 2002


First touch, 1985 or so.

Rasikananda was a Hare Krishna devotee, living in the temple, but that was all wrong: way "out" gay man trying to live a celibate life in a male dormitory? Uh uh. He lived for a little while in an extra room in my place in the Village.

Rasik was talented, loving, funny, and a gay Cuban, via Miami. He went home to let his mom nurse him at the end. Rasik's death steered me towards the Gay Men's Health Crisis. Subsequent years of AIDS Walks and Danceathons. 15 years of intense volunteering, watching people come and go, not always from the disease, but from burnout.

The population changed - no longer so many educated gay men, more people carrying monkees on their backs. A less homogenous crowd, not such a tightknit, core group of us. No one thought we'd still be doing this work 15 years into it. It's grown exhausting and lost intensity. And we've mostly moved on.

Because the afflicted poplulation has changed so dramatically, I no longer felt connected.

Another, 2001:

Michael is hospitalized with meningitis in August, grows increasingly sick, is unconscious for months as he wastes away. Neither his children nor his friends know his status - just think this is terrible luck, compounded with terrible doctoriing. Perhaps his wife knew, but she didn't tell, even as we attended him, massaging, handling his body freely. Someone read his chart, lying carelessly at the foot of his bed. Then it all made sense. His dire state no longer seemed caused by medical incompetance. The disease process was clear, but there was no chance for appropriate care or grieving. How many awful secrets had he kept?

People are complex. Disease is not ennobling. Some afflicted are good friends and bring out good in others, others are mean spirited and leave you bitter.

It is always difficult to imagine the suffering of a faraway place. Like TB before, this has become primarily a poor-persons' trial. The disasterous state of medicine in Africa is an integral part of the political disarray and economic chaos. There are no easy answers.

Lydia  1 Dec 2002

     

     

my best friend paul died in 1996 and i still think of him everyday. in the last years of his life he became extremely thankful for everyday he lived. think grace he used to say. i kiss his soul everyday when i remember his joy and try to live my life with love. we have everything we need he used to say, choose love. thank you paul. i try to love everyday. i bear witness to your life, there is no time between us. thank you. thank you. thank you.

cynthia {ameliazine@yahoo.com2 Dec 2002


1) My brother moved to Seattle to dance with the Pacific Northwest Ballet and became involved with a guy named Charlie. I first met him when a group of geology-major friends from college made a road trip there from Humboldt State to University of Washington to pick up some core samples. Doug and Charlie graciously let the four of us sleep on their living room floor. Charlie was tall, blonde, and handsome. He had grown up around Puget Sound and his family often went sailing in the San Juan Islands. I remember him telling us that when he and his brother had been kids on these trips and their mother got tired of dealing with them, she would put them in lifejackets, attach lines to them and throw them overboard to be towed by the boat for an hour or two. I can't remember what he did for a living, but I do remember that he would often buy clothing, especially coats, from second-hand stores and rework them, then sell them to boutiques. He gave me and old-fashioned tweed ladies coat with a velvet collar; I still have it.

Later, after I graduated, I went to Seattle for training as a foreign fisheries observer. I spent three weeks with them again, and Doug told me Charlie had a life-threatening illness. I realize now, this was the time period when most people were dying. Doug was torn apart by it. Six months later I did another stint as an observer and stayed with them again. Charlie was much worse. He was having trouble walking and suffered from chronic diarrhea. He had even tried tampons to keep it under control. Doug had recieved a job offer from Louisville Ballet in Kentucky - his first real paying job as a dancer, and he could not turn it down. Charlie told him to go, and he reluctantly went there. Charlie's many friends took care of him, but he eventually succumbed to dementia, and had to be hospitalized. One day Doug got a phone call and called me in tears afterwards. Charlie's friend had called and told him, "Look out the window and say good-bye. It's a good day for sailing."

There is a tile with his name on it in front of the Pike Place Market, right near where they throw the salmon. If I ever get up there again, I'll look for it. I would leave a memento there, but someone would just step on it.

2) A recent issue of Scientific American had a issue dealing AIDS in Africa. There was a picture of what appeared to be an empty bed covered with what appeared to rumpled sheets and blankets. I did not realize until after I read the caption that there was a person in the bed; a seven year old orphan whose parents had already passed away of the disease. I went back to look at it again and only after I knew what I was looking for did I find a tiny arm and face among the bedclothes. Tears were running down my face - as I turned back and read the preface to the isuue, I found that the editor of magazine had had exactly the same reaction.

I missed the AIDS walk this year. Project Angel Food sent me a lovely calendar for next year, which is still lying on the dining room table. I need to do something.

senoritafish {oxyjulis@cs.com2 Dec 2002

     

     

Being a gay man in my twenties, hiv has always been a concern in my life. It is a fear that I have experienced in the past and is a reality for people in my life.

Back in 1999, someone that I loved (Michael) told me that they had just been tested and that they were hiv positive. I was blown away by this and almost felt like crying right then and there, we were sitting in the Starbucks on Church Street in Toronto. He told me how it has been a trying time for him, but he pretty much set his mind on living his life to the fullest. What I realize now, that living with hiv doesn't necessarily mean death. It is more of a reminder of how mortal we are as humans. it reminds us of all the important things that we have, especially our relationships with others. Being stricken with hiv should not mean avoidence, but rather we should put out our hand and provide care and support.

It was truly a shock for me to learn that he had contracted hiv, but at the same time it didn't stop me from loving him. I had mentioned this to a friend at work, and they questioned me as to why I would still care for and persue someone living with hiv. and my answer is simple, cause I loved him and because hiv didn't mean death. I think that is a strong point that I want people to realize, people living with hiv can still continue to live a good life and can continually and a good sex life. < one of my most favorite gay movies is jeffery, essentially a story of love and aids in the 90's, I would recommend seeing it if you haven't already, it will help you understand my feelings about this relationship > We never became more than friends, he has since moved to Vancouver and is living a wonderful life. I will always have a place for him in my heart and I tribute this post to Mike. Thanks for the love and the friendship, I know our paths will cross again.

Rannie  13 Feb 2003


My brother has been HIV positive for 20 years or more. He lived the wild/gay/drug life in the 80's. How could he not contract the virus?

He still lives the wild life and disappears for months and years at a time, not making any contact with family.

Inevitably he ends up back in prison.

Each time he calls, or we write, I tell him that I love him because I know that one day he will disappear forever.

Bonnie  1 Dec 2003

     

     

i met Tom two years ago. i moved to orlando as a young, liberal college student without any true feeling of "belonging" to anyone. or anything.

i was a theatre major. started singing showtunes at the local gay bar, where i could croon without being hit on.

and i met Tom.

the most gracious, kind, caring soul i've ever met. kidney failure, liver failure, heart disease, diabetes, and will smoke a pack a day of Mores until the day he leaves us.

the most brilliant producer, actor, and direct it's ever been my pleasure to know. he's been a father to me in Orlando, both when i first moved, and now that my real father has passed on.

it will break my heart when he leaves, but i love him more every day.

victoria  3 Dec 2004


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{ 8 JUN 2005: Posting has been discontinued. }


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