Friday, September 28, 2018

The Porcupine of Truth--Part 2: "I know it's a disease, and I know people used to die of it and that now there's medicine for it"

Title: The Porcupine of Truth


Author: Bill Konigsberg


What it’s about (in 75 words or fewer): Carson is not looking forward to spending the summer with his dying, estranged father in Billings, Montana, who is still angry about the disappearance of his father (Carson's grandfather) over thirty years ago. Carson's summer becomes more interesting when he meets Aisha, a beautiful teenage lesbian who was kicked out of her father's home.  Carson and Aisha vow to find out what happened to Carson's grandfather--why did he leave?  Could he still be alive somewhere?

As I said in Part 1, the last 80 pages of this book affected me so profoundly, I originally planned to write the entire post about them.  Instead, I split the post into 2 parts.

So without further ado, here's part 2!



What I think, Part 2--The Public Heath Crisis of the 1980s:
  

"'How much do you know about AIDS?' he asks . . . 
'Not much,' I say, embarrassed.  AIDS has never felt real to me, pertinent to my life as a dorky heterosexual virgin." (pg. 258).

When Carson meets Turk, an old friend (and lover) of his grandfather's who lives in the Castro neighborhood, he is expected to be taken to see his grandfather. Instead, Turk takes him to Grace Cathedral, where he shows Carson's his grandfather's name on the AIDS Interfaith Memorial Chapel, where panels from the Names Project quilt are on display.


Carson breaks down and cries.
Panic spread through the city where once there had been so much joy. How was it possible that so many healthy, beautiful men could age in appearance fifty years in two months, and die looking like concentration camp victims? (pg. 260).

Carson cries for his grandfather, who had kept the secret of himself and his illness, and cries for his grandmother, who would have been devastated at the news about her husband's secrets.
It tore us apart, the disease. The way people reacted to it. . . The president didn't mention it at all.  Six years went by and twenty thousand died before he said the word AIDS (pgs. 260-261).

Carson cries for his father, who is also dying, and has no idea he missed out on having a father, who all this time thought his father abandoned him for no good reason.
Some claimed that AIDS was God's punishment for being gay. That was particularly harsh, because many of the dying had been told all their lives that they were evil. They finally got past that only to be told on their deathbeds, that God had decreed their deaths. Very cruel (pg. 261).

Carson "cries for generations of pain. Not just for my family, but for all the families" (pg. 257).


I was born in 1977, so I was very young in the 1980s, and I had no idea AIDS was considered a "punishment" disease for gay men until I was older (like probably in my 30s!). I certainly did not learn anything about the US administration's terrible response to the crisis.

The more I research the topic now, the angrier and more upset I become!

How could I have not known all of this? Yes, I was young, and yes, this was the pre-Internet era, but why didn't I learn it later?  Did I really live in such a bubble of privilege? What did other people my age learn back in the 1980s?  What did adults in the 1980s learn from the news and their experiences?


I started my own research in the literal next room.
  • Me: Oh Brendan, 11-year-old son of mine? 
  • B: What?
  • Me: Have you learned about AIDS in health class? 
  • B: . . . What's an AID?
  • Me:  Well, I guess that answers my question. Have you learned about STDs?
  • B:  They're called STIs, Mom.  And yes, syphilis, gonorrhea, chlamydia, HPV, HIV, herp--
  • Me: Yes! HIV. What did you learn about it?
  • B: Um . . . not sure . . . is it one of the ones that makes you get big sores on your--
  • Me: Wait, nope, don't wanna discuss that. Untreated, HIV can turn into AIDS and kill you. Thousands of people died from it--thousands of people still catch it.
  • B: So it's like Hitler? 
  • Me:  Godwin's law? Seriously?
[Editor's note: B occasionally invokes Godwin's law to annoy me and stop my questions. Brat. 😝]

Apparently, HIV has now been placed in the long list of STIs that kids have to memorize for their health tests (at least according to my sample of one elementary school child).


What did you learn about AIDS, people under the age of 40?
I originally phrased my question "What did you learn about AIDS in the 1980s?" but many of Facebook friends are younger than I am, although not as young as my children. Many of them don't remember learning anything, but here are a few of the responses I received from the 39 and under crowd (only edited for grammar/clarity):

  • I remember learning about AIDs as part of our health/sex Ed lesson in 4th grade, so around 1999 when I was 9.
  •  I’m 32 years old, so the first thing I remember about it was a Nick News special from the early/mid 90s when I was 8-ish.
  • I'm 33 and I knew about AIDS very early (probably by age 4) because my parents helped with an outreach program for drug addicts.
  • I'm turning 34, so I have limited knowledge of AIDS in the 80s . . . I do however have pretty early 90s knowledge because my mother was a Med Surge nurse and was one of the nurses who interacted with AIDS patients.
  • I'm 34, and I remember the message in school being that you can't catch it from hugs, kisses, toilet seats, or sharing water fountains.  

Indiana and Ryan White
My (Jennifer's) most vivid memories of hearing about AIDS are from when I was in 5th and 6th grade. I went to school in Muncie, Indiana, and about an hour away in Kokomo, Indiana, Ryan White was not allowed to go to school because he had contracted AIDS from a blood transfusion, and the parents were terrified to send their children to school with him.

I was so horrified by this.  I did not understand why parents thought Ryan White was evil; it was not his fault he was sick!  As I said earlier, I had no idea that AIDS at the time was a "gay" disease, and I don't even remember the word "sex" attached to it. I knew it was blood-borne and it wasn't like "cooties" or something like the crazy people on the news seemed to think it was.

There was a TV movie made about Ryan White, and we watched it twice in school--once when it first came out, and a year later when Ryan White died

I remember that Elton John and Michael Jackson came to the funeral (and the rumor was Michael Jackson brought his own air-conditioned coffin to sleep in! No truth to it, but it was interesting for 6th graders to imagine). 

I wondered if Ryan White was a topic in all elementary schools at the time, or only ours since we were so close to his hometown. The answer?  Most did, but they also remembered other celebrities:


Personal stories:  I received a few personal stories related to AIDS.  I am going to share one here written by a fairly prolific blogger. I plan to give her writing credit and links to her blog if/when I obtain her permission.

I’m 44, born in 1974, grew up in NC, and remember the AIDS scare very well.

I grew up in the musical theater community so I knew all about it. I remember being convinced at age 8 that I had it, simply from knowing and being in contact with so many openly gay men older than me in the theater community, and it was definitely branded as a “gay man’s disease,” at least through 1989.

It hit me up close and personal because older gay men practically raised me in the theater. They were my role models. They were loving and nurturing and taught me how to carry myself like a woman, how to apply make up, how to dance, how to have self-confidence.
 These people were my heroes. They weren’t what my church was calling “sinners” just because of who they loved. That much I knew, and that began my long standing conflict with most Christian churches.
Everyone was terrified when the disease continued multiplying and death rates went up every year by tens of thousands first, and then by hundreds of thousands. Folks were still not able to separate fact from fiction and the widespread ignorance surrounding transmission of this disease continued well into the late 80s because there was so much misinformation and perpetuated myths running rampant.

I lost a few acquaintances to HIV/AIDS, and one really dear friend, the last person I personally knew well who died from AIDS related complications, in 1994. He and I were getting ready to form our own theater company before pneumonia took him down for good. It was heartbreaking and devastating. 
 He did one last show at North Carolina Theatre, and I was honored to be in that show with him. He was playing the role of Otto Kringelein, in the musical Grand Hotel, a man who was dying and came to the Grand Hotel, Berlin, to live up his last few days of life. 
I still have cassette tapes from rehearsals of him singing. His big number was a song about facing death, and in real life he was facing death. He gave the performance of a lifetime. The lyrics in that song still haunt me: “I want to know that I once was here, while all my faculties still were clear...”

The movie Dallas Buyers Club is actually a really, really good snapshot of the type of homophobia and transphobia that was on display in the south during the 1980s, especially 1983 through 1985, the height of the scare.
 Right now I currently have three very good friends all living with HIV, and we’ve come such a long way. It is no longer the death sentence it was in the 80s. One of my friends has been living with HIV for two decades and it has never turned into full-blown AIDS. Another friend was diagnosed about five years ago and his treatment is working so well that he is now “undetectable,” meaning he cannot transfer it to others. 

This book is on the 2016 Rainbow Book List.


My final takeaway (in 75 words or fewer): I'm pretty sure that any book that inspires months of research (for fun!) is worth reading.  Not being sarcastic here--read this book.  And tell other people you know to read this book.

More of my AIDS-related research, including popular misconceptions and more personal stories, will be featured in my upcoming review of With and Without You.


Memorable quotes/passages from the book:

  • "I only became the lesbian in your basement after my Bible-thumping dad threw me out" (pg. 61).
  • "I think agnostic dyslexics lie awake at night, wondering if there is a dog" (pg. 232).
  • "It's freaky to think that someone who is just like me died of AIDS. That someday, I might get a disease because I'm a human and all humans get diseases and die. It's a part of life, I guess, and that makes me feel surprisingly alive" (pg. 269).
  • "I love it.  I love sharing food with all these crazy-ass, totally imperfect people like me" (pg. 314)

Other reviews:  Teen Librarian Toolbox and Casey Carlisle


This book is available in the Greensboro Public Library.



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