Tag: aids

World AIDS Day 2021

I get a news feed in my email each day, and though I haven’t read all of today’s email yet, the title of the lead article is “Africa: Far Behind,” about the Covid pandemic and the vaccination rate, and when I saw it on this date in particular, it was with the sinking feeling of the more things change, the more they stay the same. Often in Africa, where there are vaccinations in place, they aren’t being used because of distrust and skepticism, which is rooted at least partially in the continent’s historical experience with HIV and AIDS.

There are better-informed sources on that than I am, so I’ll leave it there. Instead, I’ll talk about HIV/AIDS and Covid in a more personal way.

In 1992, when I marched with a group of activists in Houston at the Republican National Convention, one of our chants was: 350,000 dead, NO MORE AIDS. About ten years before–1981–the first five cases of what would become the AIDS virus had been identified, and anyone involved in those early noisy protests was begging to be heard. For someone to act. For medicine, science, and government not to move faster, but to move at all. Those protestors and activists remain my heroes, because without them, HIV wouldn’t be a manageable disease in 2021. Because of science and medicine, and yes, governments, progress was made that saved not only millions of lives but taught us many of the lessons that help people survive pandemics today.

350,000 dead, NO MORE AIDS. Worldwide to this date, approximately 36.3 million people have died of AIDS, while 37.7 million people are LIVING with HIV/AIDS globally. HIV is a different kind of virus from Covid 19, transmitted through sexual contact, blood, needles, or from mother to infant–a mask won’t stop it, though a condom can.

It’s estimated that there have been 5.2+ million deaths from Covid 19 globally already. Covid 19 is spread in three main ways:

  • Breathing in air when close to an infected person who is exhaling small droplets and particles that contain the virus.
  • Having these small droplets and particles that contain virus land on the eyes, nose, or mouth, especially through splashes and sprays like a cough or sneeze.
  • Touching eyes, nose, or mouth with hands that have the virus on them.

Covid has an easier transmission route than HIV, and while vaccination may not prevent a person from being infected, it can mean the difference between staying home feeling lousy for a few days versus landing in a hospital or morgue. And wearing a mask or avoiding places and people who won’t wear masks to prevent the spread of Covid is, I guess, something like wearing a condom or not sharing needles to prevent the spread of HIV. Tragically, many people refuse(d) those safety measures, too.

It’s bizarre to me that now there are actually people who scream against vaccinations that save lives. Who refuse to wear a little piece of cloth that protects themselves and others because it infringes on their freedom. Our friends lost to AIDS: Steve, Jeff, John, Tim R, and Pete, could only dream of a lifesaving vaccination or something as simple as wearing a mask. They would rather have lived longer, and I sure wish they had.

I made promises to them that I’d never forget them. That I wouldn’t let other people forget those times. That I’d keep striving to be a writer and tell stories, not necessarily about AIDS, but about friendships and the families we create as we make our lives on this planet. Their memory impels me to stay alive and to write as inspired not only by them, but by the friends who remain.

Thank you for being part of the journey.

Tiny Tuesday!

My newest FCTRY action figure: Dr. Anthony Fauci, with and without a mask.

I’ve been familiar with Dr. Fauci since I began learning all I could about HIV/AIDS in the early 1990s. He’s served in some capacity in national health since Reagan was president. He was the target of many AIDS activists’ anger because they felt the government wasn’t doing enough to stop illness and deaths. Yet one of the most outspoken of his critics, playwright and founder of GMHC and Act UP Larry Kramer, ultimately called Fauci “the only true and great hero” among government officials during the most active years of the AIDS pandemic.

As a scientist, Fauci has a moral imperative to speak truth to power in a field in which answers may be needed quickly but must come as a result of research and study. The more we learn, the more the answers can be refined. Science is cautious and thorough. Politics is reactive and dependent on the goodwill of people. If you’ve had the Internet since the mid 1990s and have been at all active on social media, “goodwill” seems hardly to exist.

It’s a sad irony that some of the biggest lies of this pandemic have been told–and continue to be told–about Dr. Fauci. It isn’t surprising, however, since most of them come from people who’ve been lying throughout their careers. Lying seems to come as naturally to them as breathing.

Although over the last 14 months, I’ve come to understand that breathing itself is controversial.

A really happy day

Today is our late friend Steve R’s birthday. The last birthday we celebrated with him and other friends was in 1992. Every year since, I’ve made him a cake (or sometimes, Lynne made him a cake), and we always invited friends or coworkers to share it with us in memory of Steve.

Usually it’s a Winnie the Pooh-themed cake, and this year, it was again. Also this year, after thirteen months, because we are all fully vaccinated and past our two-week waiting period, we have a friend staying here to celebrate with us. It seems right that Lynne is the first friend back at Houndstooth Hall, because she was the last to stay with us here before we began to isolate at home.

Steve would have been delighted, and any step toward whatever is the new normal is a welcome one.

Happy anniversary of your birth, Steve, and welcome back to your room, Lynne and Minute!

where to begin…

So like many others with an internet connection, I’ve been trying to keep up with the news and updates on COVID-19. I remind you right here: I’ve lived through a pandemic and lost friends to a virus that was abysmally mishandled by the administration under whose watch it first struck, by agencies that were supposed to inform and protect the public, that was politicized and whose sufferers were marginalized, cruelly treated, mocked… I could go on, but to what point, really.

Recent history. I posted as I always do on World AIDS Day (December 1) to recognize those living with HIV and lost to AIDS, among them people I still love because love outlasts death. I also posted on Instagram, and my post was noted by an account called theaidsmemorial, who asked if they could use my photos and if I’d share a little information about my friends. Of course I said yes to all, and I also began following their account.

It has been emotionally brutal. Reading people’s stories and seeing their photos of the lost ones has taken me back to the hardest time in my life. I read every single post and usually end up crying. Time has not softened these losses or the hurt survivors still feel at how often family, society, medicine, government, church failed to comfort, support, respect, and care for people with AIDS. Don’t get me wrong. I saw and experienced powerful stories of compassion and love, as well. I remember every healthcare worker, agency representative, family member, and friend who sustained my loved ones and me through those years. I remember every celebrity and political figure and public figure who rose to their absolute best as advocates and supporters. But most of all, I remember the ill and the dying having to find their OWN way to fight for their lives, to form movements, to wage war against apathy, cruelty, and inaction even as they fell. ACT UP, FIGHT AIDS! and SILENCE = DEATH were not slogans. They were battle cries.

These days, I read and study and follow each day’s news and wonder, Did we learn nothing?

I understand the complexity and many-sidedness of a public health crisis, but I’m offering fair warning to those who know me. Do NOT try to engage me in any conversation in which you defend the indefensible. A lie is lie. A failure is a failure. Incompetence and bigotry can hide behind whatever facade they wish to, but that doesn’t mean they aren’t there. I will call out hypocrisy, dishonesty, indifference, and inhumanity as I see it, and I don’t give one solid fuck where your politics reside. I know where my conscience resides.

…you help me sing my song…

This one is harder than some others to share. Let me get a few photos on here first.

Setting up my remote office.
When I checked into the hotel (I could SEE the venue from the hotel!), the guy at the desk asked what brought me, and I said Paul McCartney. He pointed to a table across the lobby where I could sign up for a shuttle to and from the concert. So convenient. My pickup time was 6:50 Friday night.
My seat was on the floor. Haven’t done that for a long time.
It doesn’t matter why you go, when you’re at a ball park, you eat a hotdog. It’s mandatory.

Background on going to see Paul McCartney. I follow Sir Paul on Instagram and he has been posting photos and stories all along from his Freshen Up tour, and I knew it was coming to the States. And I thought, What if Tom and I try to see him in concert as our anniversary gift to each other?

We considered various dates, but there was always something in the way so that it wouldn’t work out–Arlington, New Orleans, Phoenix, Las Vegas, LA–I was looking at them all, but there were too many scheduling conflicts.

Finally, Tom said, “Look, I don’t care about this as much as you do. It would be a good concert, but it means a lot more to you than it does to me. You go. I’ll stay home and take care of things here.” One way you can stay married for 31 years is to understand and respect the other person and know sometimes you are an anchor, and sometimes you wish them wings.

My original Arlington choice was a good date and an easy drive. I left after transport on Thursday and worked in my hotel room that night and through the day on Friday, went to the concert Friday night, left Saturday to spend a day and night in Corsicana with Lynne (and worked from there, too–bless the Internet and WiFi), and returned to Houston Sunday. I needed time outside my space, outside my head, outside my routine.

So at the concert… I’m literally about as happy as I can be on this planet. I was exactly where I wanted to be when I wanted to be there. It’s a significant date in my life, June 14. On that date in 1992, I said goodbye to our friend Steve when he died because of AIDS. He and I always said, “Will you still need me when I’m sixty-four?”–and the answer was always, “Yes,” though we knew we weren’t really going to get that option.

I knew Steve (who was himself a musician and a conductor) would be delighted that I was at this concert. He wanted the people he loved to LIVE every minute after he was gone.

So I’m living in that moment, relishing every song, reminding myself every few minutes, This performer came into your life when you were seven. You watched him and his band CHANGE THE WORLD. He’s interwoven in your history, just as he is for millions of others…

And then he put down his guitar, went to his piano, and played “Maybe I’m Amazed.” I shocked myself because I started crying. We will always have new and wonderful relationships if we’re open to them, but I never forget that two of Paul McCartney’s most profound loves–part of both his emotional and professional lives–ended when John Lennon was murdered and when Linda McCartney died of cancer. They will always be an empty space on his stage.

Riley played that song for me on piano, too, and he was the empty space in the audience, so I cried. And that’s okay. Steve also once told me, “I’d be so sad if I thought no one would cry for me.” I’ve shed so many tears for both of them. I love them still and always will.

I like this video a person put on YouTube for the song. It celebrates Paul and Linda beautifully in photographs.

Maybe I’m amazed at the way
You’re with me all the time
And maybe I’m afraid of the way
I leave you

Maybe I’m amazed at the way
You help me sing my song
You right me when I’m wrong
Maybe I’m amazed at the way
I really need you

Button Sunday

Yesterday I left the house and the computer and the work and enjoyed an outing to Murder By The Book. My friend Dean James was signing the latest in his Cat in the Stacks series, Six Cats A Slayin’ (written as Miranda James).

It’s always so good to see John and the staff (and bonus! John’s husband Matt) as well as Dean, who now lives in the distant land of Mississippi.

What’s better as winter closes in than a new cozy to read?

It was particularly good to get out because it was December 1. I wore my red ribbon pin in recognition of World AIDS Day and those impacted by HIV/AIDS. My four lost friends are in my thoughts every single day. Without them, especially without Steve, my last 28 years would have been vastly different. There would be no Timothy, Timmy, Jim and all the novels I’ve been part of writing with them. All the other wonderful writers I’ve met and edited and become friends with–they wouldn’t be part of my life. I wouldn’t know the people and readers I’ve met online. I wouldn’t know Dean or John or Matt.

We never know where life is going to take us, but these four are a reminder that the people with whom we’ve shared deep love continue to weave themselves throughout the fabric of our lives. Thank you, my friends.

Tradition

Last night was the return of Craft Night, Part 2. Rhonda and Lindsey came over (first time since they helped us pack up stuff after the flood!) and brought their dog Pepper. Jack is the only one who ever had a play date with Pepper at RubinSmo Manor, so it was a chance to introduce her to Anime and Delta. Anime likes to make new friends slowly, and Delta just wants to be the Boss of All Dogs and People. Pepper doesn’t care. She loves everybody.

Later, she even got a little outside time with Tim’s and Debby’s dogs. Pixie and Penny took it all in stride, as they usually do. Pollock got a little rambunctious and needed some time in solitary to think things over. Harley thought Pepper was wonderful, and Pepper did not understand that Stewie does not think he’s a dog and doesn’t want to be treated like one–so Stewie went back to Fairy Cottage to brood about why flies, his nemeses, exist.

Jack and Pepper, however, renewed their friendship and played so hard that when the night was over, Jack dropped like a rock and slept all night. I hear Pepper was worn out, too.

Of course I took no photos of any of this. However, today being our late friend Steve’s birthday, we did all recognize the occasion last night with birthday cake (thank you, new oven!) as we do every year. It was so nice to be in an almost fully recovered home, celebrating Steve’s life with people we love.


And a big thank you to Tom. When I realized that all the Winnie the Pooh ornaments I use to decorate this yearly cake were in storage, he went through the Christmas decorations that are still on the property to see if any of them were duplicated and still in their boxes. Found one!

World AIDS Day

This photo was the runner up to my Photo Friday “Twilight” theme. The red ribbon on the jacket of Eclipse has always reminded me of the years and years I made and handed out red ribbon pins to coworkers, friends, and strangers. This year, the red ribbon is packed away in storage. The newsletters I used to write, and the blog posts I used to publish, about HIV and AIDS are no longer necessary because if you are already using the Internet, you can find all the local resources and global information you want or need at your fingertips.

But for those of us with longer and more personal memories, this never stops being a day to reflect on those lost, hope for the best for those who still struggle, and feel gratitude for those who stay well thanks to the efforts and sometimes downright fury of the ones who went before them.

The theme of World AIDS Day this year is “Increasing Impact through Transparency, Accountability, and Partnerships.” One of many things AIDS/HIV has taught us is that we are stronger together, and that we must never be silent in the face of catastrophe. AIDS/HIV transcends borders, politics, race, religious belief, gender, sexuality, age, and national origin, and so must we in eradicating it.

And for the ones I love still–Steve R, Jeff C, John M, and Tim R–I continue to wear my red ribbon pin each year on December 1 in honor of them.

Veterans Day

In the early nineties I began to educate myself about AIDS and the staggering loss of life it caused. I read and heard too many accounts of people losing their friends at an age when that seemed impossible–all these young people taken at a time when their lives were either blossoming with new experiences and accomplishments or they were enjoying the results of those.

The only metaphor I could think of was war. Where else had young men and women seen their friends and equals (among their own and their enemies) die at such young ages but war? AIDS was a disease that laid waste to a generation the way Vietnam did my brother’s, or World War 2 my parents’, and the Gulf War my nephews’ and nieces’. As the great-granddaughter, daughter, and sister of soldiers and an airman, I was taught in my home to honor those who served, and it was a lesson that was repeated from every stage, podium, or pulpit.

Of course outside of the AIDS/HIV ravaged community, no one was advocating that we care about those fighting or suffering the losses in the war that was AIDS. In that way, AIDS more accurately depicted the reality I had come to understand about our military veterans as I grew older. Everybody says support our troops and puts it on magnets or bumper stickers. There are parades and speeches and even a day, today, created to recognize veterans.

In truth, we seem to deal much better with a different holiday–Memorial Day. We honor the dead and comfort their survivors. We lay wreaths and set flags on the graves of the lost. It’s uncomplicated for the larger community (though not so much for those who actually knew and loved the lost). Our throats close up and our eyes well with tears when we see those flag-draped coffins or hear the 21-Gun Salute.

In contrast, for me, for decades, the speeches on Veterans Day ring hollow because we don’t actually care for at least one segment of our veterans as we should–those who have seen battle or served in wartime or who have been trained to serve in wartime. The cost to the mental and physical health of soldiers, airmen, sailors, and marines is staggering. That isn’t to say there aren’t people trying–there are many groups of veterans who continue to serve each other. There are medical professionals and volunteers and families all engaged in a new war to save those who have seen and done things the rest of us never will. But the larger community, the nation as a whole, filters out the grim reality of the statistics of the costs of war and military service to those at home: drug use, alcoholism, domestic violence, unemployment, trauma, behavioral issues, and suicide.

Yesterday I read a Twitter thread that resonated with me in so many ways. I’m putting it here so I can go back to it. I hope it makes everyone who reads it uncomfortable. We should be uncomfortable. I wish I thought it would change things. But we still glorify battle (how many video/computer games exist that do just that, how many military-style weapons are in the homes of people who have no military training) and avert our eyes from or refuse even our compassion to those for whom such training was not a game, not a hobby. It begins with compassion. The national dialogue on AIDS changed because compassionate people outside the battle began to speak to their friends and families, even if it made them uncomfortable. But it only begins with compassion. After compassion must come awareness, education, and action.

I could extrapolate this to society’s other ills that culminate in atrocity (poverty, racism, sexism, for example). But today is for veterans. If we are going to train killers, then we need to provide a supportive care system to retrain them. Our healthcare system, our national discourse, and our efforts as individuals need to stop glorifying war even if we recognize it as a final necessity–my father did what he thought was right, and I believe he was right, too–and deal intelligently with its consequences.


Thread Reader is happy to present an unrolled Twitter story by @cmclymer

1/ I have some things to say about the Texas shooting. It’s gonna piss some people off, and that’s too bad. It needs to be said. (thread) 2/ I served in the Army. I was trained as an infantryman. A grunt. That’s about as nuts-and-bolts as it gets in