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Curious Clips: Excerpts from the Curious Report

Wednesday, September 27

INSIGHTS FROM SURVIVORS OF THE 1980S AIDS CRISIS

Survivors of the 1980s AIDS crisis have shared accounts of their experiences; users of Reddit revealed what it was like to be living in what felt like a constant state of tragedy. Real LGBTI people remember the confusion, the lack of information, the lack of support from the government because of the suffering from the virus known only at the time as GRID (gay related immune deficiency).

‘I’m a 62-year-old gay man. I thankfully made it through the epidemic that started in the early 80s and went right through the mid-90’s. You ask what it was like? I don’t know if I can even begin to tell you how many ways AIDS has affected my life, even though I never caught the virus,’ one user said.
 
‘By the early 80s, I had what I would consider a really large circle of friends and acquaintances and once the epidemic really started to hit, it was not uncommon to find out three, four or more people you knew had died each month. We set up informal and formal support groups to look after our friends who took sick. Feeding them when they would eat. Changing them. Washing them. Acting as go-between with families who “were concerned” about their sons, nephews, brothers, etc., but wouldn’t lend a hand to help because AIDS was, you know, icky.
 
‘After they passed, there were memorial services to plan with no real time to grieve because when one passed, you were needed somewhere else to begin the process all over again. I kept a memory book/photo album of everyone I knew that died of AIDS. It’s quite large to say the least. Who were these guys? These were the people I had planned to grow old with. They were the family I had created and wanted to spend the rest of my life with as long as humanly possible but by the time I was in my late 40s, every one of them was gone except for two dear friends of mine.
 
‘All we have left of those days are each other, our memories and pictures. I hope that statement doesn’t come off as pitiful though. I am fit, active, healthy and you know what? I enjoy every single day of my life. I enjoy it because most of my friends can’t. In my own personal way, I want to honor their lives by living and enjoying mine.’
 
Excerpted article by Joe Morgan
Feb 2, 2015 - Gay Star News
 
Another user said: ‘It was flat out scary. Every guy you met was like a possible time bomb. Especially the early period when we knew very little about it – didn’t know if you could get it by kissing, by holding hands…Then lots of your friends or friends of friends get sick and sicker and then die. And you never ever quit being really really fucking pissed off about the whole thing. I’m alive today due to sheer randomness.’
 
And another said: ‘If you were living in the Castro in San Francisco, everyone in the neighborhood was gay… So it wasn’t just your friends that were dying, it was your whole neighborhood. One day your mailman would be replaced, the next day that flower shop was gone… You wouldn’t be invited to the funeral, so it was just like people were disappearing.’
 
‘It was madness. It was terribly cruel,’ another Redditor said. ‘It was inexplicable and unexplained, for a very long time. Research was underfunded, and in many cases large institutions and public figures rooted for it to be happening. People died suddenly of unexplainable things. Toe fungus! Tongue thrush! Rashes. Eyes welling up with blood. Horrible shit. Everyone knew it was hitting gay men, nobody knew what it was. They called it the gay cancer. People were very superstitious. I had handfuls of groceries and a man lectured me on not pressing the elevator buttons with my nose because I could catch AIDS from it. Yes. That happened.’
 
A lesbian of the era said: ‘While I was not ‘at risk’ (per se, we know more these days), we all lost many good friends. It is true that there is a somewhat mystifying (to me) separatist attitude between some gay men and lesbians, especially back then, this tragic time really brought us together. Sitting at the bedside of a terminally ill friend, and just holding their hand when everyone else was just terrified, was a gift I was one of those willing to give.
 
‘No one should die alone, and no one should be in the hospital on their death beds with family calling to say “this was God’s punishment”. My friends and I, men and women, acted as a protective layer for ill friends, and companion to mutual friends juggling the same, difficult reality of trying to be there, and be strong when we were losing our family right and left. Difficult times that should never be forgotten.’
 
Another Redditor paid tribute to the role of lesbians, calling them ‘every bit as heroic as soldiers on the front lines of any war. These women walked directly into the fire and through it, and they did not have to. And that they did it even as some of the gay men they took care of treated them with bitchiness, scorn, and contempt.
 
‘When the AIDS crisis struck, it would be many of these same women who would go straight from their jobs during the day to acting as caregivers at night. Because most of them lacked medical degrees, they were generally relegated to the most unpleasant tasks: wiping up puke and shit, cleaning up houses and apartments neglected for weeks and months. But not being directly responsible for medical care also made them the most convenient targets for the devastating anger and rage these men felt – many who’d been abandoned by their own family and friends.
 
 
‘These women walked directly into the fire. They came to the aid of gay men even when it was unclear how easily the virus could be transmitted. Transmission via needlestick was still a concern, so they often wore two or three layers of latex gloves to protect themselves, but more than once I saw them, in their haste and frustration, dispense with the gloves so that they could check for fevers, or hold a hand that hung listlessly from the edge of a bed whose sheets they had just laundered.
 
‘They provided aid, comfort, and medical care to men withering away in hospices, men who’d already lost their lovers and friends to the disease and spent their last months in agony. They’d been abandoned by their own families, and were it not for lesbians – many if not most of them volunteers – they would have suffered alone. And when there was nothing more medicine could do for them and their lungs began to fill with fluid, it was often these same women who’d be left to administer enough morphine to release them, given to them by the doctor who had left the room and would return 15 minutes later to sign the certificate (a common practice at the time).
 
‘HIV killed my friends, took my lover from me, and tore up my life. During that time, I did what I could. But nothing I did then or have ever been called to do in my life puts me anywhere near the example set by the lesbians I knew in the 80s and 90s. I’ve felt obligated to remember what they did, and to make sure other people remember it too.’
 

 

Curious Clips: Excerpts from the Curious Report

Wednesday, September 20

WHO WAS RYAN WHITE?

Ryan was one of the first children with hemophilia to be diagnosed with AIDS following a blood transfusion in December 1984. Ryan White was diagnosed at age 13 while living in Komono, Indiana and was given six months to live.

When Ryan tried to return to school, he fought AIDSrelated discrimination in his Indiana community. Along with his mother Jeanne White Ginder, Ryan White rallied for his right to attend school - gaining national attention - and became the face of public education about his disease.
 
Surprising his doctors, Ryan White lived five years longer than predicted. He died in April 1990, one month before his high school graduation and only months before Congress passed the legislation bearing his name in August 1990 - the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act.
 
Ryan’s mother, Jeanne White Ginder recounts the early years of struggle, pain and triumph...
 
How Could He Have AIDS?
 
"Ryan White was diagnosed with AIDS on December 17, 1984. He was one of the first children, one of the first hemophiliacs to come down with AIDS, and it was definitely a time where there was no education and there was hardly any information on AIDS at the time. So I was living in Kokomo, Indiana, and Ryan was attending Western Middle School, and it was something that I really didn't even believe he had. I felt like, "How could he have AIDS?" He was a hemophiliac since birth, and I just felt like "How could he be one of the first ones?" I felt like somehow, in some way, it was going to be something else. I really never really believed he had AIDS for quite a while. At that time, of course, he had no precautions, or anything. There were no precautions at the hospital. And all of a sudden the CDC shows up and the CDC started putting in all kind of precautions, you know: the gloves, the gowns, the masks and so forth, and started talking to the nurses and so forth. It became apparent just like overnight that all of a sudden things were different.”
 
Excerpted from HRSA: Health Resources and Services Administration website.
 
Mom, I want to go to school
 
“When Ryan was diagnosed, they only gave him 3-6 months to live. So at that time, I thought every cough, every fever, I worried that it was going to be his last. And I really never thought he'd be healthy enough to go to school. But as he started getting healthy, as he started gaining weight, he started to ask, "Mom," he said, "I want to go to school, I want to go visit my friends. I want to see my friends." So I really kind of put him off for awhile and finally he just said, "Mom, I want to go to school, I want to go visit." So it was a long process, we had to go through almost a year and a half, he didn't go to school for about a year and a half. He was worried about taking the 7th grade over again, and he didn't want people to think he was dumb, because he was a very smart and intelligent kid. So it was a long process. Through court hearings, we thought it would take one court hearing, and we'd have all these medical experts in so to speak, and then everybody would be educated, but it didn't happen that way. It was really bad. People were really cruel, people said that he had to be gay, that he had to have done something bad or wrong, or he wouldn't have had it. It was God's punishment, we heard the God's punishment a lot. That somehow, some way he had done something he shouldn't have done or he wouldn't have gotten AIDS.”
 
He was my son
 
“Well a lot of people will say, "Your son was such a hero" and all that, but to me, he was my son. And you know, sometimes it's so confusing, because he was my little boy, and to share him with everybody, because he wasn't perfect, but at the same time, he was my son.”
His legacy would be
 
People are receiving better quality HIV care and living longer with HIV.
 
“At the time when Ryan was diagnosed with AIDS, I mean, we heard of so many drugs coming out, and none of them was worth anything. By the time you heard of one, there would be another one out, and you would never get the research for one. And none of them worked. And so even in the early 90s, when I was hearing there was hope, I kind of thought, ‘You know, we had that hope, too, but it didn't pan out.’ But they did pan out! The biggest contribution I think that Ryan made is, and I didn't know it at that time, that his legacy would be that people are getting their drugs and their treatment and that people are living with AIDS.”

 

Curious Clips: Excerpts from the Curious Report

Wednesday, September 13

THE ROYAL DISEASE

On March 27, 1884, one of Queen Victoria's sons fell down some stairs at a yacht club in southern France. The accident was minor; Prince Leopold suffered nothing more than a few bumps and bruises, but the 31-year-old Duke of Albany had hemophilia, a disorder that prevents the blood from clotting. His injuries triggered massive internal bleeding. Within 24 hours, he was dead.
 
Though Victoria never suffered from hemophilia herself, she carried a genetic mutation that causes the condition and passed it on to several of her offspring. In Queen Victoria's case, both of her parents appear to have had functioning blood-clotting genes. However, due to a copying error during reproduction one of hers was dysfunctional. Such spontaneous mutations are uncommon, but far from unheard of - they pop up in about one person out of 50,000. Victoria passed her deficient blood-clotting gene to only one of her sons - the unfortunate Leopold. She also passed it to two of her daughters, Beatrice and Alice.
 
The Next Generations
Leopold, Beatrice and Alice had 12 offspring in all. Leopold's boys were unaffected because they got their X chromosomes - and thus their blood-clotting genes - from their mother. But two of Beatrice's sons, and one of Alice's, inherited the faulty version of the X. Alice's son Frederick died as a young boy after smashing through a window. Beatrice's son Leopold bled to death at the age of 32 during a knee operation. Maurice, her other hemophiliac son, escaped a similar fate, only because he was killed instantly by an exploding shell during World War I.
 
On the female side, Leopold and his sisters had four daughters who inherited the faulty X chromosome and spread it widely through the royal houses of Europe. During the early 20th century, princes of Spain, Prussia, Russia and Great Britain suffered from what became known as "The Royal Disease."
 
What about the royals of today? Oddly enough, Victoria's deficient blood-clotting gene never made it beyond the fourth generation. By sheer luck, none of Victoria's great-great granddaughters in Spain or Britain inherited it. In Prussia she had only great-great grandsons. And none of her Russian great-great granddaughters ever had any children; all four were murdered during the Bolshevik revolution.
 
What type of hemophilia was “The Royal Disease”?
Because the last known descendant of Queen Victoria with hemophila died in the 1940s, the exact type of hemophilia found in this family remained unknown until 2009. Using genetic analysis of the remains of the assassinated Romanov dynasty, and specifically Tsarevich Alexei, scientists were able to determine that the “Royal Disease” is actually hemophilia B. Specifically, they found a single-nucleotide change in the gene for clotting Factor IX that causes incorrect RNA splicing and produces a truncated, nonfunctional protein.
 

 

 

 
 
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