Day 94. Expect the Unexpected
As some of you know, I had the great honor to be included in David Weissman’s award-winning documentary, “We Were Here,” and occasionally receive messages from people who’ve seen it. The following arrived a few days ago, a perfect reminder to all of us, in these polarized times, to continue to do our work, stay committed to our beliefs, and tell our stories. Hearts and minds can and do change.
“Hi Ed. I just watched the movie in which you are featured. “We Were Here.” What a very moving and touching testimonial. First I will say that I am neither gay or HIV positive. In fact, I am a very conservative right wing type. There is just something that really captures my attention about the AIDS epidemic. Growing up in the 90’s (born in 83) my right-wing family did not really talk about it. My family was very homophobic and so that rubbed off on me. It was not until I took a job in local news and became friends with a few gay co-workers that I really lost all of my barriers. I know that these things don’t matter. My point of writing is I want to say thank you for telling your story. I feel great sorrow for those effected. I am really having trouble putting it into words. But I guess it is just a tragic and fascinating thing. Heart breaking how these wonderful lives, thousands and thousands, just starting out their lives were decimated with no answers. And no help. And total fear. Thank you for sharing. I know this sounds jumbled. Sorry, just know that your voice is valued.”
Day 97. Make your own Valentine
With all the hatefulness coming out of the White House, it’s too bad that Valentine’s Day has so much commercialized baggage attached to it. It would be so great to simply use today to hugely express our love and affection for one another, separate from all the consumerism, forced sentiment, awkwardness and isolation that it creates. My second-grade teacher, Mrs. Sail, sent notes home to all our parents, asking them to not buy cards for us to distribute. Instead, she had us make our own. She gave us colored paper and scissors and glue and magazines and asked us to make a picture of something that we loved. When we were done, she hung them all over the room. I can’t remember what my Valentine was back then, but I know what it is today.
Day 101. The really really bad day
It’s been a 100 days since the election. The good news is that we only have to do this 13 more times (it’s 1354 days til November 3, 2020.) We can do anything 13 times, right? So many friends and colleagues having so many hard days. I once met a patient named Wayne who came onto the AIDS unit after spending several weeks in the intensive care unit. After being told he had AIDS the month before, he’d drank a can of Drano, put his head in the oven and then jumped out the picture window in his living room. When I first met him he said, “I had a really really bad day.” When his 7-year old son visited him, the boy would draw pictures in a book he always carried with him. When his dad fell asleep, he’d come out into the hall, sit in the visitor’s lounge, talk to other patients. He’d tell his stories to anyone who listened, stories that weren’t about death and grief because he wasn’t attached to how things were supposed to be. He told us stories about the world he lived in, the world he saw with fresh eyes that day, and then the day after that.
Day 105. Fighting the flu
Am battling the cold that’s going around, doing everything I can to get it out of my chest where it’s made its last stand. Whenever I’m sick like this I ask myself why I ever get depressed or troubled about anything, including Trump, when I have my health? In the early days of the AIDS epidemic friends and colleagues were doing everything they could to get better. When Western meds didn’t work, they tried putting Xerox toner on Q-tips for KS lesions, drinking urine for improved immune response, visiting shamans in Mexico and the Philippines to access other healing paths. We protested Reagan’s awful policies, lobbied politicians for funding, created and worked in organizations to support those who were sick and dying. Many of us never let AIDS become normalized; it was always front and center. It was unifying to fight back, to stay mobilized, to find ways to help however you could; it was exhausting too, but you get tired when you work hard. I don’t want what’s happening in Washington to become the new normal; when my wheezing and coughing passes and I’m up and about again, I need to remember that someone else is suffering even as I am feeling well again. There’s always something I can do!