Olivia turned to me while she worked on her homework. They were studying microbiology in sixth grade last week, and because Olivia wants to be an epidemiologist, she had been intrigued by this unit of science. “Mom, what is a disease that hasn’t been cured yet?”
“AIDS,” I replied.
“Mom, what’s AIDS?” she responded.
My mouth gaped open. I said, “You don’t know what AIDS is?”
She was taken aback. “No.”
It was then I had to explain to her the importance and terror AIDS had occupied in my childhood of the 80s and 90s. It was then I showed her the book I was reading, And The Band Played On: Politics, People, and The AIDS Epidemic (1987) by Randy Shilts. It was then I had a chance to verbalize the great anguish I felt about what I had been reading.
The AIDS epidemic raged for many years before anybody outside of the gay community cared about it or took action. Newspapers largely ignored the problem, and it wasn’t until July of 1985, when actor Rock Hudson was fatally ill and in the final stages of the disease, that the press paid attention. In 1987, some 11 years after the disease had been killing people in large numbers, the press began to focus on AIDS. (There are earlier cases, but this is when the epidemic began to rage.) New York first saw cases, with the tell-tale symptoms of kaposi’s sarcoma, in 1979. For many years, the disease was considered to be a homosexual disease. Therefore, it was ignored.
U.S. President Ronald Reagan delivered his first address on the AIDS epidemic in 1985. By that time, “36,058 Americans had been diagnosed with the disease; 20,849 had died” (p. 596).
Shilts’s book traces the recognition, rampaging, and research of the disease. He recounts the many gay men who were infected in the early years in San Francisco, the fight to close the bath houses in that city, the flight attendant who is thought to have spread the disease far and wide during his sexual liaisons, the stories of hemophiliacs and blood transfusion recipients and babies who ended up infected, the mother and grandmother who died of the disease although her doctors kept the diagnosis from her and her family for many years, the discovery of the virus by the French (although an American scientist is thought to have stolen their virus and claimed the discovery as his own), the personal sorrows of the many people affected, the overwhelming number of deaths, the activism of those concerned with finding a cure, the political maneuvering behind the funding for research, the purported cures and medicines that never worked, the work of many doctors and scientists, and the ultimate recognition nationally of the epidemic. His book is acutely about the failure of the nation to recognize and fight the disease. His book is heartbreaking.
His book returned me to my childhood. I remembered the many school lessons on what to do if somebody started bleeding in the classroom or on the playground. Nobody was supposed to touch the blood. I remember worrying that my father might contract the disease. I remember Magic Johnson announcing his own diagnosis. I remember that announcement softening the way many of the boys in my school thought about the epidemic.
I remember stopping my dad in a hotel lobby in Park City, Utah, to share with him the latest joke I had heard. He likes jokes. I thought he would like this one.
We were headed out to ski, but I stopped him and said, “Dad, do you have AIDS?”
He bent down and got serious. “Oh, sweetie. No, I don’t.”
I realized then that he thought we were having a serious conversation about his orientation and my fears.
I quickly changed the mood, embarrassed. “No, dad. Not like that. It’s a joke.” However, I realized that the joke wasn’t funny.
“Okay,” he said. He stood back up.
I tried again. “Do you have AIDS?”
“No,” he replied.
“Are you sure?” I said.
“Yes,” he said.
“Are you positive?” I responded.
“Yes,” he reassured.
“You have AIDS,” I said, with a weak laugh and no emphasis. There was no glee. That joke was not funny. It would never be funny.
After reading Shilts’s book, I know why even more than I knew then.
ur thoughts resemble mine.. 🙂 thanks fo knowledge
Poignant purposeful and a pretty good post! All in an alliteration. Hard stuff is often funny, at first. The innocence spoiled forever, a fear generated by adults that shatter the glass that is purity. Worlds changed with that little word.
Yep, things sure did change. You are right that we often use humor to discuss and make sense of hard topics.
Emily, thanks for the reminder. I saw the movie “And the Band Played On,” but did not read the book. This was one of the Reagan’s administration’s biggest failings in not addressing this sooner. Reagan and his aids were caught joking about the epidemic early on as they believed it only affected gays, which still is no laughing matter. The movie shows doctors begging for help at conferences as the data started to mount.
There was a lot of miscommunication early on and later about the disease. The dating community reacted faster than politicians, as there was an increase in protected sex from heterosexual partners. People did not know and they knew the doctors and community leaders were uncertain.
Thanks for sharing this. It makes you question things, like the Zika virus, when doctors say we don’t have a problem here and then we start seeing some cases in hotter areas of our country.
I need to see the movie version. The book really highlighted the phenomenon you mention: that we only care if things affect us. I think Ebola was a similar issue to Zika.
I had several close friends who died from AIDS. I suppose it’s not surprising that there are already young people who don’t know anything about it. In one way, I suppose that’s good, because it shows how much farther we have come from the days when people were terrified of it, but it is also still a very serious and deadly illness in countries in Africa and Asia. We should not forget things like this.
I’m sorry for your losses. And I agree: we should not forget!
Yes, for a while it was terrifying, especially for some populations.
This is a wonderful post, Emily. Thank you for sharing it.
Thanks! I appreciate it.
This is beautifully written, Emily.
I can still remember the fear and panic and, if anything, it made homophobia even worse for a while. I’m glad we were able to at least get past the terrible pigeon-holing of this disease.
I agree. It is so sad that we use tragedies like this one to divide us and make us hate, rather than reaching out in love and understanding.
I’m months late but it still captures a big part of what I’m trying to survive right now. I wish I had asked my own mother what AIDS was.
Vaughn, I hope you have a good support network. I’m sorry to hear about your struggles and please let me know if there’s anything I can do to help. Thanks for commenting.
Blogging is a great support network for me right now, it allows me the release from my emotions that I sometimes require to keep sane 🙂 I am truly fascinated by reading inspired write ups around the web, so keep them coming!