Thursday, December 1, 2011

A Painful, Personal Story

World AIDS Day 2011 is winding to a close, just as the JTMF Winter Event is about to begin. And while I am proud to be a part of the James Tolin Memorial Fund, I wish it never existed. 

James passed away in 2002, after a valiant 10-year fight against HIV/AIDS. I never knew the man, but from all accounts, we would have been great friends. And I have to mourn the loss of a potential friend, almost as much as I mourn the loss of dear, sweet Scott. When Scott passed away in 1986, there were no agencies to provide support for those afflicted. There were lots of scared people; nurses who wouldn't touch him; friends and family members who abandoned him and a President who didn't care.

About two weeks before Scott passed away, I went on my weekly visit to the hospital where I had watched him literally waste away before my eyes. I walked into the ward and had to take a breath - he was nearly skeletal, his skin covered in KS lesions and his hair almost gone. He saw me and started to cry. I walked over to his bed and kissed his forehead. "Why are crying?" I asked. 

"You're the only one..."

"What do you mean?"

"You're the only one who keeps coming back." 

Fighting back the tears, I just sat and held him for a while. When I realized he had stopped crying, I looked down and saw he had fallen asleep. I moved to the chair next to his bed and sat, watching him. It was one of the few times I'd seen him in a long time where his face wasn't wracked with pain. A nurse, wearing gloves and a mask came in and asked me if I wanted a mask. I said "No, thank you," and she woke Scott up to take a pill. After she left, he said "Why do still come? Aren't you afraid?"

"No," I said and he started to cry again.

I saw Scott twice more, after that. The first time, he'd had a bit of a rally and we spent most of the visit laughing and joking. The last time I saw him, he was in and out of consciousness; hallucinating and terrified, though he recognized me and seemed to calm down when I talked to him. When I went back the next week, his bed was empty and no one would tell me what had happened because I wasn't family. When I got home, I called his father, who hung up on me. His mother lived in Florida and I had no idea how to find her (this was before the Internet - yes, I am that old), but I finally managed to track down his sister who told me that Scott had indeed, died. He was cremated. There was no funeral; no obituary. They were too ashamed to acknowledge he'd even existed. 

I've never told this entire story to anyone. My family would have been appalled if they'd known I was visiting an AIDS ward every week. My father would have had a stroke. My sister was just too young to fully understand and my mother would have been afraid I would get sick. It was a terrible secret to keep, but I am glad I was there for Scott when no one else was.

It's been 30 years since AIDS was named, and 30 million people world-wide (gay and straight) have died from it. 30 million. 30,000,000. Think about that number.

AIDS diagnoses have been on the decline in the U.S., but continue to rise in Third World countries. President Obama gave a rather hopeful speech today, but the disease is still with us. People are still dying. I hope Mr. Obama is right and that this is the beginning of the end of AIDS. Too many wonderful, talented, loving and just plain good people have been lost. 

This isn't the post I thought it would be. I didn't mean to bring you all down. There is hope. Research and education are the best defenses against this insidious disease and every little bit you can do, helps. I know times are tough. I know that Christmas is coming. But if you have a dollar or two to spare, please consider donating to an AIDS charity, There's still so much work to be done. Here's a list of a few charities dedicated to eradicating HIV/AIDS:


The Elizabeth Taylor AIDS Foundation

The Hyacinth Foundation

The James Tolin Memorial Fund

Please consider making a donation to any one of these or other organizations which are trying  to make AIDS an unfortunate footnote in human history.

More, anon.

1 comment:

DeepBlue said...

A big hug to you, my friend!

I know...