The other day, an old graduate school friend and I got together to rehash our old lives and new experiences, and one of the first things he said when he saw me was, “Those red marks on your face remind me of Kaposi’s Sarcoma.”  I was instantly stopped — “Kaposi’s Sarcoma” was a phrase I hadn’t heard in over a decade — and when I quickly explained the marks on my face were actually pinches of frostbite from the dermatologist to remove some overactive sebaceous gland residue, he smiled with relief. As an older Gay man, my friend knew lesions that look like that have traditionally indicated a dire diagnosis.

My friend was right to be concerned.  Lesions like Kaposi’s Sarcoma were, not too long ago, the mark of a death sentence from HIV/AIDS.  The lesions were instantly identifiable, and often pocked the nose, face and chest and mouth — and tended to especially brand Gay men with a new “mark of Cain” — in that they were infectious and ill and, in some hateful, chaotic, circles, deserving of community expulsion and shunning from the village like lepers in antiquity.

Here’s the National Library of Medicine’s definition of Kaposi’s Sarcoma from the National Institute of Health website:

Kaposi’s sarcoma is a cancer that causes patches of abnormal tissue to grow under the skin, in the lining of the mouth, nose, and throat or in other organs. The patches are usually red or purple and are made of cancer cells and blood cells. The red and purple patches often cause no symptoms, though they may be painful. If the cancer spreads to the digestive tract or lungs, bleeding can result. Lung tumors can make breathing hard.

Before the HIV/AIDS epidemic, KS usually developed slowly. In HIV/AIDS patients, though, the disease moves quickly. Treatment depends on where the lesions are and how bad they are. Treatment for HIV itself can shrink the lesions. However, treating KS does not improve survival from HIV/AIDS itself.

I was riveted back to a moment during my graduate school years when Bernie Jacobs, then the head of the Shubert Organization, told me a story about the famous Broadway musical director Michael Bennett.  Michael was best known for directing “A Chorus Line” and “Dreamgirls” and one day he stopped in unannounced to see his good friend, and producer, and theatre owner, Bernie.

Michael told Bernie he needed to show him something and he steered Bernie out of his office and into a side storage room at the Shubert Theatre.  Michael closed the door and lifted his shirt and showed Bernie a bunch of purple lesions on his chest.

“What’s wrong?  What are those?” Bernie asked.

Michael said, “They’re lesions from Kaposi’s Sarcoma.  I’m sick, Bernie.  I’m not sure how long I have to live.  The doctors tell me I have some sort of cancer.”

Bernie nodded and Michael lowered his shirt. Bernie took his hand, and together they silently stood there, still in the storage room, with nothing left to say because nothing could ever be said or done to make things right again. Michael Bennet died a few months later at the age of 44 from lymphoma brought on by complications from the AIDS virus.

Nobody really knew much about HIV/AIDS back then.  All we knew was that too many of our friends were dying and those ugly, awful, lesions were a visual indicator that something really bad was active and in force.

Unfortunately, by the time the lesions began to show, few people ever recovered enough to continue living.  Those marks became terrifying living tombstones.  The world lost an entire generation of actors and musicians and creative minds to the scourge of the AIDS epidemic and, sometimes, I wonder if all that suffering and dying was all for naught. Fortunately, through the incredible advancement of medicine — HIV/AIDS and that awful Kaposi’s Sarcoma — are now better managed than they ever were before the outbreak.

When you hear stories today of young Gay men “riding bareback” — having sex without a condom — and their rationale for that deadly danger is if they ever get infected with HIV, there will be a cure before it becomes full-blown AIDS, you have to sit and shake your head and wonder at the incredible foolishness of the young mind where life is cheap and the body lives forever and history means nothing.

We need to remember the ravages of Kaposi’s Sarcoma, and we need to remember the example of Michael Bennett who faced the end of his young life by sharing his diagnosis and dismay with a good friend who could do nothing to help him in the end but to hold his hand.

(UPDATE: June 5, 2012 — We are delighted that this article was featured on WordPress.com’s Freshly Pressed.)

73 Comments

  1. It is terrifying to think that there are people out there having sex so casually when that is precisely what is helping to spread the disease. I would have thought that people would have learned from the quick spread of HIV in the 1980s and 1990s that safe sex is of the highest importance.

    Thank you for the touching story of the friends. It really shows how friends are there for you when you need them most.

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  2. I recently watched a documentary called “We Are Here” about the rise of AIDS in San Francisco in the 1980s– the terror and uncertainty of the gay population as they began to lose their friends in huge numbers, the political turmoil, the homophobia from onlookers. It must have been so horrible to see this going on and not really understand why or how it was happening. I’m glad we’ve come so far since then– I’ve never heard of Kaposi’s Sarcoma.

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    1. Hi Emily —

      It was live a horror movie in slow motion, in real time, in real life. Young Gay men were getting these strange, purple, lesions and nobody understood why.

      It was actually dentists who first began to notice the Kaposi’s Sarcoma lesions during routine mouth inspections during exams. They started sounding the alarm that something was not right…

      Because nobody knew anything — except that these Kaposi’s Sarcomas existed and were making men severely ill — the lesions started to be colloquially called “The Gay Cancer.” It was an awful naming scheme, but the end result was pretty universal because the lesions were just a single indicator of the overall devastation of the syndrome.

      Here’s a shattering report from 1985 trying to figure out the connections:

      Kaposi’s Sarcoma is reported as the initial manifestation of the acquired immunodeficiency syndrome (AIDS) in approximately 30% of cases. Most cases are in men, although it has been reported in all risk groups. Kaposi’s Sarcoma in AIDS is more frequent among whites and homosexuals than blacks and intravenous drug abusers. Overall mortality is approximately 41%, with over 60% of patients alive at 1 year and 50% at 22 months. Overall survival is 18 months; however, some patients who have had the disease for 3 to 4 years are still doing well.

      http://annals.org/article.aspx?articleid=700068

      Pedro Zamora, starring on The Real World, really brought home the disease in a mainstream medium on MTV. He was dead at 22.

      http://www.latimes.com/entertainment/news/la-et-pedro31-2009mar31,0,3353974.story

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      1. Wow, thanks for all that– There was still so mich I didn’t know. I would have never expected that dentists were the ones to sound the alarm but I’m glad they did.

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        1. It must have been such an eerie experience as a dentist to start seeing these mouth lesions in the mouth that you’d probably never seen before in your career. Then documenting it and testing it and then later finding out you were right at the start of a national health epidemic. How terrifying!

          Speaking of dentists… and current HIV horrors…

          OKLAHOMA CITY, April 18, 2013 – Blood tests conducted on patients treated at an Oklahoma oral surgery practice that has been closed over health concerns show that 57 have hepatitis C, three have hepatitis B and as many as three have HIV, the virus than can lead to AIDS, officials said on Thursday. …

          Health officials so far have screened 3,122 people who underwent oral surgery procedures at clinics operated by Dr Scott Harrington, a Tulsa oral surgeon who is accused of using improper sterilization techniques that may have exposed his patients to blood-borne viruses.

          http://www.huffingtonpost.com/2013/04/18/dentist-hepatitis-hiv-scott-harrington-patients_n_3111932.html

          Oh, and this similar horror just this month in Pennsylvania:

          A recent state investigation alleges that a York County dentist put her patients at risk for contracting illnesses including Hepatitis B, Hepatitis C and HIV.

          On April 29, the Pennsylvania State Board of Dentistry temporarily suspended Dr. Jacqueline A. Marcin’s license to practice dentistry, according to a state filing.

          Through its review, the state found that Marcin did not attempt to sterilize some of her instruments between uses.

          http://www.ydr.com/business/ci_23386397/state-springettsbury-dentist-put-patients-at-risk-hepatitis

          We aren’t even safe today from cross-HIV contamination!

          I’m glad you’re with us Emily. Now these memories and lessons belong to you, too!

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  3. What a treacherous story and yes, I remember, Kaposi’s Sarcoma all too well. It killed many of our friends and colleagues just when they were ripening into their own places in the world.

    As you mentioned, we lost a whole generation of scholars and artists and other talented people. There were just wiped out and we were left with huge, empty, holes to fill in our lives. And they died only because they were human and only because they wanted to be loved.

    The Pedro connection on The Real World is also a good reminder. Pedro seemed to make AIDS/HIV more human, and a little less terrifying, in the minds of many. He helped put a real face on the disease.

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    1. Yes, we were right in the middle of this catastrophic horror. We thought it was some sort of fast-acting cancer and that we could stop it and cure it. Well, today, we can slow it down, and repress it a little, but the danger is still there and very alive:

      https://bolesblogs.com/2012/06/26/when-eddie-got-aids-in-2012/

      Now we live with half of our friends and peers missing and dead in an early grave.

      Your remarks about Pedro are square on — I remember the scene with fellow cast member, and medical student, Pam Ling, when she asked Pedro how it went at the clinic with his blood results — and when he told her his CD4 T-cell count was 32, her horrified expression told us everything… it was over for Pedro. He knew it, and now Pam knew it in real time, and it was so horrible to see, just for a second, the doctor in her realizing his diagnosis was fatal, and then how she quickly recovered as a friend to try to keep the rest of the conversation steady. But she knew — and because she knew, we knew.

      T-cell counts below 200 are considered critical and life-threatening… so 32 is probably as close to the end as you can start to get… and yet Pedro lasted a bit longer than predicted…

      http://www.aidsmap.com/CD4-cell-counts/page/1254931/

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    1. I remember your good co-worker. He had a job, but he was homeless, and he slept on the subways at night. He was critically ill, but kept up a tough fight. He was a dancer and he was fit. We visited him in what we thought was a hospital, but it was actually a hospice.

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  4. UPDATE:

    I’m getting email from people who want more information on the Dentist role in the AIDS epidemic.

    When these Kaposi’s Sarcoma lesions began to appear on the body — they were easily excused… a mole, a bad burn, a bruise… sometimes they’d heal and go away and sometimes they would not.

    However, when these lesions began appearing in the mouth, they were harder to dismiss. They created gum and tooth pain and, even if you looked in your mouth, you might not see anything wrong. So these young Gay men would go to the dentist complaining of tooth pain and, during the examination, the dentist would find a lesion or two, find it odd and remarkable, and take a biopsy.

    The biopsy would return with indications of some sort of cancerous lesion… and a pattern began to establish in San Francisco dental offices — that then started to spread Eastward — with the news these unexplainable Kaposi’s Sarcoma lesions were appearing in the mouths of Gay men, and to look for the lesions during every patient exam.

    It was the rise of these lesions that led Dentists to start wearing gloves at all times while working on patients — they never used to wear gloves when I was a child and teenager — and for dental offices to routinely autoclave every instrument that came in contact with patients and to put plastic covers on every touchable surface in their offices.

    Dentists were the tip of the spear in the fight against — not just the discovery of, but also the prevention of — AIDS/HIV and their early work in the field to try to figure out what was causing outbreaks of Kaposi’s Sarcoma in mouths of so many young men is compelling to this day as a matter of Public Health and epidemiology.

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  5. Interestingly enough, I was just talking with a friend last week about Kaposi’s Sarcoma.
    I remember it all too well, when my best friend and his partner called to tell me they were tested for the HTLV antibody. “It doesn’t mean we’re sick, though,” he said, “it’s just that we have the antibody, so that means we’ve been exposed to the virus.” That was 1984, I believe.
    Not long after that, my friend’s partner could no longer lift his arms, lost a lot of weight, became very weak, and developed lesions – “Gay Cancer” is what people were calling it. He also developed thrush in his mouth. It was painful to see him wasting away, miserable, frail, and terrified of dying. He had constant diarrhea and pneumonia, and seemed to contract any other opportunistic infection that happened to come around.
    His parents came from Ohio to Washington State to bring their son home to die. All letters were returned unopened.
    This was a very difficult time. Friends from college were dying. Eventually, my best friend developed full-blown AIDS, and stayed in late stage for a long time, in and out of the hospital. He also had experienced partial (and frightening) paralysis, a nagging, persistent cough, and eyesight problems. Strangely enough, when death finally came for him (at the age of 34), it was smoke inhalation from a house fire that did him in. But his brother told me that it was probably best that way, since he had become delusional.

    Thank you for your post. I haven’t recounted this story in a long time because it still hurts. I miss my friends.

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    1. Stuck —

      It was hard reading your comment through tears welling in my eyes. You explain the misery and the horror of it all so well. So many things were wrong with our friends — so many fatal, terrible things on their own that, when mixed together — spelled a fast and often painful and miserable death.

      The first thing we did in the midst of the epidemic when we met a friend at risk was to check their face and arms for lesions. Not obviously… but consciously… and with precision. Sometimes it was easier just to look for clues than to ask a question you hoped did not have a final answer, but you always ended up asking anyway. Not just, “How are you?” but … “Are you okay? Are you healthy?” You always held your breath a little bit waiting for the reply.

      A female friend of mine in Nebraska many years ago had an uncle who had AIDS. I don’t think it was called that back then. “He was sick” was the nomenclature in the Gay community with coded, embedded, understanding of what that meant. Nobody really knew anything about it at the time and she, as a college Sophomore, was the only one left to try to take care of him. He was deathly ill, and no hospitals or doctors had any real answers for her or had ways to help him, and so she was left with this important man in her life dying in her arms day by day.

      It is difficult to talk about, but it’s important that we do so — because those who died can’t speak for themselves to warn the living — and it’s important for others to know what happened so this sort of hatred and alienation for those afflicted with a disease won’t happen again.

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  6. Thank you, David, for your comfort and insight. Agreed — it is difficult, and it is important. And you are spot on with your description of meeting and greeting a friend with, ‘Are you okay? Are you healthy?’

    I learned so much during those years — not only about the disease (what we knew about it back then, which was little and shrouded in fear), but also about the gay community — at least, the circles we traveled in. And of course, I learned about the general public and their reaction to this ‘gay plague.’ Hard lessons, most of them.

    That Carl’s parents came to the home he shared with Jon and just spirited him away has always been a hard spot with me. He was a fun, artistic, lively man, who had’ joined the Navy to see the world.’ He and Jon and I did everything together, and losing him felt like the end for Jon and me. I remember that they didn’t even let Jon say goodbye. They just took Carl’s things in bags (just a few things — they didn’t want to touch anything for fear they’d get sick, too), carried him out to the car, and drove away without a backward glance, all while Jon and Carl were both in tears.

    As heinous as that was to me at the time, I came to a better understanding of their reactions when I became a parent. How awful it must have been to bring their son home and watch him waste away. I still don’t think it was the right thing to do, especially how they went about it, but in one part of my heart, I know they were hurting, too.

    Your story of your friend and her uncle is so very sad. I can’t imagine doing what she did at such a young age. That time forced a lot of things on us, didn’t it?

    It was a terrible, horrible, awful time, and it affected us all in some way. It’s too easy to put it in the past when it hurts like it does, but we owe it to Carl and Jon and your friend and her uncle and
    Michael Bennett and Pedro Zamora to keep talking.

    Thank you so much for this.

    And congratulations on being Freshly Pressed again. This was a most deserving post.

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    1. It’s great you’re able to share your experiences with us, Stuck. It helps specifically define an uncertain place and time in history.

      Yes, it was always uncomfortable doing a health check — usually while shaking hands or embracing — because there was no subtle way to really know if someone was okay or not. Generally, if you cared enough to ask, you got a direct answer, and that was good, even if it turned out to be some bad news.

      The thing about the whole AIDS epidemic in the early years is that you were either positive or negative — and there was no in-between. That all changed with Magic Johnson’s amazing body, and “living with HIV” became a more stabilized norm, but still a scary one. Long gone were the scary days of “you can get it from a toilet seat!”

      You’re right that the Gay community really came together to support each other when nobody else would help. ACT-UP became the new rallying cry in the big cities, but in the small towns and byways, they still had to stay quiet or risk being “outed” and humiliated by disease association. Silence really did Equal Death in a multiplicity of ways!

      Your story is incredibly sad and challenging. People do strange things out of fear. I would not have sent back the letters unopened. I would have read them, and replied on behalf of my dead son to thank the folks for thinking of him. I do know a lot of parents felt shamed that they had Gay children. They blamed themselves and the environment and did not credit the “born this way” data we have now.

      My friend was strong and incredibly smart. She understood the disease better than anyone else I knew, but when her uncle finally died, she was never really the same. A hole had been bitten into her from the disease, and she silently suffered for a long time. Nobody could relate to what happened to her. A big part of her died, but she kept living in that hole.

      In 100 years, it will be amazing for people to look back on the 1980s and the rise of the AIDS epidemic and see how horribly those infected were treated — especially by the religious institutions that mocked the ill and the sick and blamed them for succumbing to the own “bad behavior.” Their inaction is, and was, indefensible in any moral definition or human form.

      It is important for those who remember to step up every now and again and just put a reminder out there how things used to be, and how easily cruelty can creep into a society to purposefully maim and harm good people simply for living as they were born.

      I appreciate your support and I am thankful for this article being featured on Freshly Pressed.

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  7. Thank you for sharing about Kaposi’s Sarcoma and making others aware of it. Especially I have never been aware of this before now.

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  8. “When you hear stories today of young Gay men “riding bareback” — having sex without a condom — and their rationale for that deadly danger is if they ever get infected with HIV, there will be a cure before it becomes full-blown AIDS, you have to sit and shake your head and wonder at the incredible foolishness of the young mind where life is cheap and the body lives forever and history means nothing.”

    The scary thing is…I could plug in “young black women,” even “older black women,” in that quote. And I internally shake my head at the presumption that traditional medicine can catch and tackle everything in everyone. You know you try not to give a speech but you end up thinking – have you forgotten what we were all talking about and everything that was being covered in the media concerning HIV?

    I actually wish the media would keep it in focus. People think the dangers are gone away and won’t apply to them…

    Great post. Thank-you.

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    1. Thanks for the great comment!

      You’re right about plugging in others into the bareback scare. The problem with the human condition is that the body seeks unimpeded pleasure. Any barrier to that pleasure is often mischaracterized as suffering. So condoms, and dental dams, and in some cases, probably even the HPV vaccine, are perceived as unnatural sheaths agains the full human experience.

      Unfortunately, what many of these young and immature minds fail to realize is that a single moment of pleasure now can result in decades of suffering later. In order to make that leap of communicable logic, though, one has to be a bit of a time traveler and share a sense of fearing death.

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      1. You hit the nail on the head.

        “The problem with the human condition is that the body seeks unimpeded pleasure. Any barrier to that pleasure is often mischaracterized as suffering.”

        Absolutely, and that single moment of pleasure without exploring some precautionary measure might ensure it, in a particular circumstance. Not every treatment works on everyone.

        HPV is another thing, the probability of cancer from it is extremely high. So the momentary pleasure has a very high price attached for those without a sense of future possibilities (foresight).

        That fear of death just needs to be developed.

        Thanks again David.

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        1. Right! The HPV vaccine is proven effective for teenage girls AND boys! The longer they wait, the more likely it is that the vaccine will not work. Prevention is key in this madness and we need proper insight and facts and direction to help those we care about make the right decision that lives far beyond the moment.

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          1. I SO agree. People are saying “Oh should Michael Douglas have said that publicaly?” I think it was a good thing because conversations need that spark for television shows, blogs, magazines to start talking about it (unfortunately). And if his statement starts the momentum it’s a great thing.

            Whatever angle causes talking again, is good – because you’re right proper insight, facts and direction will help us have the accurate conversation as well as promote what needs to be done in our communities.

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          2. Yes, the Michael Douglas conversation was great for everyone to have — even if the spirit in which it was revealed was, perhaps, impure — but we need to think about these dangers and threats and better decide for ourselves what the facts really are and how we want to act on that new information.

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          3. Lol. Yes, there is that (his motivation). So much just needs to come to the forefront again, but then we do need to better decide how we want to act on that information. Not just, run to the vaccine or some other med. Prevention is powerful and may be safer on some counts.

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  9. It is such a long time since I have heard that phrase -so – much pain, so many deaths, so many wasted lives – take heed younger generation – have safe sex – because condoms not only prevent pregnancy but other sexually transmited diseases

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    1. It is a horrible phrase. It was archaic for decades, and then it became an everyday colloquialism for a couple of decades, and now, we hope, it remains a memory and not another moment of unrestrained panic.

      I’m with you on the condoms, but I confess, when I was younger, I hated them. What kids need to realize is that you really have no idea what is swimming in somebody else’s bloodstream — even a blood test is only a momentary snapshot in time — and so the best way to protect yourself is to not exchange bodily fluids. Even monogamous sexual relationships can hold hidden dangers for HPV and HIV and herpes if one is not timely and careful.

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      1. I know condoms are disliked for a lot of reasons – I am not a great fan of them myself except from the saftey they have offered me over the years.

        I am not sure which would be easier – stopping people exchanging bodily fluids – especially teenagers and those in their twenties – or inventing a condom that people liked and enjoyed using .

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        1. When I was in high school, the big kick was to buy the “Sheep Intestine” condom that was supposed to feel more natural and less “rubbery” — but they were hard to open in their sealed, plastic cases, they had a horrible smell — and the girls didn’t like the look or the mess of them. When AIDS started rising, those condoms disappeared because they could not protect you from HIV transfer.

          I also think that, for men, there is a powerful need “conquer and deposit” their “manly residue” in their sexual conquests. Crass, yes, but sometimes we all need to get down to the crassness of behavior in order to understand and remedy it for social safety. A condom will never satisfy a man in need of conquering and depositing, because the explosive goal never leaves the condom.

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  10. This is a very important post. Thanks so much for writing this. I am in my early 30’s and missed out on seeing the terrifying adverts. Perhaps these adverts need to come back to remind and alert the youth of today. I remember being 19 and not having a care in the world…I know most of my peers were the same. I think more awareness is needed as STD’s keep rising, kids are not hearing the heart breaking real life stories.

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    1. Good comment, Alana. The problem with teen sex — or sex with any stranger — is you have to take their word for it if they tell you they’re “clean” before anything starts… even if you are both using proper barrier protection. A lot of times that conversation never begins, because urges take over in moments when clarity is needed.

      There’s an invincibility in youth that is quaint at our age, and dangerous at theirs.

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      1. Definitely David, that invincibility is a major characteristic of youth. I cringe when I think back to being a teenager.
        We definitely need to be doing more but yeah it is not easy to get young people to pay attention as it will ‘never’ happen to them.

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        1. I have been wondering how best to teach kids about sexually transmitted diseases and the end result that, once you get many of the virals, they’re with you forever.

          I remember being taught you are sleeping with everyone the other person ever slept with — and while that’s true and on point, it’s actually too existential a concept for the young mind to comprehend. We, as older, and more experienced people, get the idea even though it’s too late for many of us.

          So I thought, what if we had a tree stump with a hole in it and inside held a variety of possibilities: Knives, bees, money, an axe, a massager… and so on… and you had the option to blindly stick your bare hand in there or, you could opt to wear a metal mesh glove that, while reducing sensitivity, would still protect you from all the bad possibilities while giving you a chance for getting, and feeling, something good, too.

          The bare handed would get cut, bleed and even lose a hand if the axe fell — and they could also get massaged or make money, too.

          The protected hand would be immune to the knives and the axe would hurt, but not cut, and they could still make a money grab and sort of feel the massage enough to enjoy it.

          The lesson is — wearing a condom protects you like the mesh glove protects you, but going bare protects you from nothing — especially from your own bad judgment.

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  11. Yes, I remember Kaposi’ Sarcoma from when I was working at NCI. I originally learned about it, however, when I was synthesizing thalidomide for the express purpose of eliminating the apthous ulcers that were caused by KS. Thanks for the reminder. It’s good that this has been given visibility so that more young people learn about it.

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    1. Hi Erik!

      Thanks for jumping into the conversation. For some of our readers in other parts of the world, do you mind explaining some of the terms in your comment?

      What is NCI and can you talk about your work there in more colloquial terms so everyone can appreciate your research?

      Are Kaposi’s Sarcoma still a part of the HIV/AIDS cocktail, or has medical science been better able to repress or capture the outbreaks before they start to show?

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      1. Sure David, I worked at the National Cancer Institute in the Division of Cancer Etiology. As a young researcher there, I was working with virologists who were studying human papilloma virus, human herpes virus, and HIV.

        But it was thalidomide—that drug with a bad rap— that was a powerful analgesic…it reduced if not eliminated apthous uclers in the mouths of AIDS patients so they could eat. A major problem, as the patients waste away not only from the drugs but also from the inability to consume.

        As for the the last question, alas, I have moved on to other research, so I would have to seek out that answer myself. All the best!

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  12. I recall Kaposi’s Sarcoma all too well. However, I would like to share a short story of one of my experiences with it that (I hope) will bring a smile.

    It was the early 1990s. My best friend Gareth was years away from being diagnosed with full-blown AIDS. Each year we attended Pride in Toronto. One particular year, we had friends on a float, and when they came by, we ran up to hug them.

    One man on the float was wearing a stunning metallic gold g-string, and nothing else except shoes. He was smiling, waving, hooting and hollering with everyone else, a beaming smile on his face all the while. His entire body was covered in painted silver aureoles. I remarked to Gareth that I thought he looked amazing. Gareth replied, “He sure does. He’s circled all the Kaposi’s sarcoma on his body.”

    Bravery comes in many forms.

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        1. I really appreciate you helping take the conversation in a different, refreshing, direction. The result is still the same, but the lessons become grander and more important. Thank you!

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  13. Your post recaptures the terror we all felt then. Learning that the disease could be prevented by something as simple as condom use seemed too miraculous to be true, and until recently, I was sure everyone had heard this vital message. But as you note, young men don’t perceive the danger. It’s troubling.

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    1. Thanks for your comment! It was alarming to learn that a condom could help prevent cross-infections — but then remember the terror we had when we discovered our blood supply was in peril?

      We had no idea if the blood in our banks was safe or not. Many hemophiliacs were unwittingly infected with HIV/AIDS because there was no test to perform to check to see if the blood carried the virus or not.

      Then there was the concern over organ transplants… even as late as 2011:

      The National Taiwan University Hospital on Sunday transplanted AIDS-infected organs, donated by a man surnamed Qiu who accidentally suffered a fatal fall from his apartment, to five patients, before an HIV/AIDS test revealed the organs as HIV-positive, as reported by the United Daily News headquartered in Taiwan.

      The 37-year-old man had arranged for himself to be a donor, and his heart, lung, liver and two kidneys were given to five patients under the supervision of 47 medical staff. The incident has left a total of 52 people at high risk of AIDS infection.

      http://www.globaltimes.cn/NEWS/tabid/99/ID/673065/Taiwan-hospital-transplants-AIDS-infected-organs-to-five-patients.aspx

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  14. Recently during an emotional sermon, our pastor remarked that the Christian Church (by that he meant all Christians) was wrong back in the 80s and 90s when its leaders failed to be among the first to care for those who had been infected. While that is of no comfort to the many who died and who grieve for them, and does nothing to eradicate the views of those who are using Scripture to demean and criticize others, it does give me hope that we–my church, my country–will view homosexuality through a clearer and more loving lens as time goes by.

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    1. Thanks for sharing that story. It’s important.

      When people tell me “Being Gay is a lifestyle choice,” I simply ask them, “Who would ever freely choose to be hated and denigrated and punished the the majority power every single day of their lives? Who would choose to live in the closet? Who would choose to be prayed against for death?”

      That’s why the scientific proof that people are born Gay is important — because it equalizes the requirement for acceptance. I understand the perceived fear that, if being Gay is a “Born This Way” fact, then a whole slew of protections against discrimination and greater access are required, and that is a threat to the unstable majority, but that doesn’t mean it doesn’t need to be done.

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      1. “It’s a choice,” even if true, doesn’t excuse anything, though. Race is not a choice, and it’s wrong to discriminate against people based on race. Religion IS a choice (for the most part), and it’s wrong to discriminate against people based on religion.

        It’s just wrong to discriminate. It’s always amazed me how people actually go looking to excuses to crap on some out-group. Answering the question of “Given my own personal identity, who do I get to sh*t on and how do I justify it?” seems to occupy an awful lot of most people’s waking cogitation.

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  15. I’m old enough to remember 1) when dentists worked barehanded, and 2) what Kaposi’s sarcoma is. Strange though it may seem, it heartens me that I had to be reminded of it. Who would have imagined that they day would come when some people would have forgotten it enough to be reminded of it?

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    1. We’ve come a long way in the last 30 years on this topic, but that doesn’t mean we won’t go around it all again. Memory is convenient while facts tend to stay around awhile, throughout generations, ready to kill again when resolve weakens.

      There are college kids who are 18-20 years old who have never lived without the internet and who have never lived with Kaposi’s Scarcoma ever mentioned. It’s hard to remember something you’ve never had to learn.

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      1. I can’t recall who it was — possibly Dorothy Parker — who said that life isn’t one damn thing after another, it’s one damn thing over and over. 😦 A tangential comparison, but I often think the same thing of young women who think that “times were simpler in the past,” and I want to remind them of sex-segregated Help Wanted ads where all the sh*t-paying jobs were under “Help Wanted: Female,” when you couldn’t get such basic things as a car, a credit card, or even a damn Bachelor’s degree, husbands had the legal right to rape their wives, and the only way you could manage your reproduction was in an alleyway with a coat hanger and septicaemia. And they nostalgically wax idiotic about those times because some stupid frickin TV character has a dreamy vintage hairstyle, and “fierce” eyebrow makeup. AGH!

        We never learn from the past, or at least if we do, it sure doesn’t stick.

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        1. Right!

          You remind me of my “Wire Coat Hanger Generation” article:

          https://bolesblogs.com/2005/07/21/wire-coat-hanger-generation/

          Young people don’t seem to want to learn from history — they want to experience firsthand what others have already learned the hard way so they can get the full effect of the experience — and I often believe that want comes from basically being disconnected from real living because of their forced, vicarious, existence via smartphones and the internet.

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        2. I’m less likely to think it’s because of smartphones and the Internet only because history has been rhyming in an ugly way for as long as there have been people, and long before the invention of current technology. It seems to be a depressingly permanent part of us, for whatever reason I don’t know and sort of don’t care. Whether we WON’T learn from history or we CAN’T learn from history, the end result is the same.

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          1. You’re right! I guess every generation needs to have their own “Scopes Monkey Trial” just to confirm what we already know about evolution and the Bible and science…

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  16. I lived on Christopher St., from 1975-2003.

    The decade from 1983 through 1993 was one of unrelenting mourning, sadness and grief. It started when some friends and acquaintances began to display strange symptoms. Some of them died very suddenly. Pneumonia was almost always an indication that a beloved friend had a very short time left. Over the decade, more than one hundred of my friends and acquaintances would die. Those of us alive now, who lived in major cities at that time, carry the sad memories of those almost unbearable times.

    My wonderful friend “little” Vinny, a wildly creative, loving, funny, compassionate young man (he was a short Italian guy, with the appearance and demeanor of a little bear cub) became ill during the spring of 1983. He was hospitalized, on-and-off. Over the summer he was hospitalized continuously, until his death, on Halloween ‘eve. After work each day, during that summer, I visited Vinny in the hospital and gave him sponge baths in his hospital bed (he was usually feverish). At that time it was seen as very risky to do this; several people tried to dissuade me. I’m very stubborn, to not help comfort my friend was out of the question. We’d talk and laugh and review his short but wonderful life. We each knew he wouldn’t make it through this.

    Shortly before his death, as he lay on a hospital gurney in the hallway, I had a profound insight. At this time he couldn’t talk anymore, but he was conscious. As I held his hand and looked into his eyes, I realized that all of existence is timed perfectly; each event, each moment. All of existence is beautiful, profound, miraculous and perfect, even the saddest events.

    For the last few months of his life, his parents moved down from their home in Buffalo, N.Y., to live in the hospital; taking care of their son, exhibiting nothing but love for him. They’d alternate, sleeping on a couch in the visitors’ room, while the other kept vigil beside their son’s bed; never complaining, ever.

    That Christmas season, “Silent Night” was replaying in my head often; tears always flowed, thinking of “little” Vinny, as I heard:

    Silent night, holy night
    All is calm, all is bright…
    …Sleep in heavenly peace
    Sleep in heavenly peace

    The next ten years were filled with more death and loss than one is able to mourn for adequately. It becomes a generalized mourning, one death blends with the next, too quickly to comprehend; the unceasing rapid-fire onslaught doesn’t allow one to mourn for individuals properly. A blur of sadness and despair was the backdrop, against which life’s events continued to unfold. My family had no idea, actually, of the immensity of the relentless loss. I never really mentioned it much; maintaining a happy facade at Christmas, Easter, birthdays.

    I still cry, all these years later, thinking of my friends who suffered. Vinny was the first of my friends to die though. It was devastating; he was so full of life before he became ill!

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    1. Thanks for sharing your story with us. It was both beautiful and heartbreaking at the same time.

      I agree few people realize how AIDS basically, and silently, wiped out an entire generation of highly talented and incredibly wise Gay men. Wisdom comes from suffering. If they knew what was going to hit them — they would have taken precautions against an impending death — but when you don’t know something massive and unforgiving is building within you to slowly and methodically replace your life with death, you never really have a chance to make any sort of cogent decision to avoid the new inevitable.

      When did you start to get a sense that something was deeply wrong and that illnesses and deaths were building into something that could not be explained away with anecdotal evidence?

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      1. Thank you David!
        It was the early to mid 1980’s when the undeniable realization of profound—and incredibly sad—events arose. I lived at Christopher St. and Waverly Pl.; the Village was my neighborhood. Sheridan Square gym was a place to lift weights and socialize with friends and acquaintances. I formed many great friendships there with a wide variety of guys. I was never a bar/club person; I did enjoy going to the coffee shops and small restaurants; walking down to the river; roller skating and riding my bike. All of my food shopping was done at the small fish markets, fruit/vegetable stands, Balducci’s, Zito’s, Faicco’s and Murray’s cheese; so I knew many, many people.

        It’s very difficult to describe what it was like, on a daily basis, to see formerly healthy, vibrant friends with Kaposi’s Sarcoma; some with a few lesions, some covered with them. It was incredibly sad to see men walking in the neighborhood with canes, barely able to walk a few blocks, very very slowly. We’d meet and talk a bit, both understanding—with no need to acknowledge verbally— that their time was short. Too often, these meetings were the last.

        I had a very good friend, Pablo, who’d come to my apartment once a week to have coffee and listen to music. He lived on West 10th St., across from a small shop that “little” Vinny owned. These weekly visits became a time to share “updates” on who’d died, or who became ill, since the last week. It was overwhelming, it was devastating.

        Thank you,
        Mark

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        1. Thank you for that extra detail, Mark. It was like living in a real-life horror movie — and everyone around you who were dying were your friends.

          When did you leave New York and why?

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