by HIV and AIDS are infections that still plague the face of the earth even though there are drug treatment therapies that can buy time for those infected.
Without medical intervention and treatment the average incubation period for HIV is 9-10 years and death after a full-blown AIDS diagnosis is still only 9.2 months.
People and their deaths are not best understood on timelines and statistical averages. The value in the human component of living is in remembering those who have suffered and fallen before you.
To live is to remember.
I remember in the mid-to-late 1980’s how this unnamed “Gay disease” we now know as HIV/AIDS was eating people alive. It was a frightening time because no one really knew in a shared, universal societal understanding, how HIV was being transmitted or how AIDS was being contracted.
There were rumors in the mainstream community you could get AIDS — no one really understood the HIV component until years later — by sitting on a toilet seat or by someone sneezing on you or by just shaking hands with an infected person.
There was a tremendous stigma around those infected with AIDS and most of those who were sick were IV drug users or Gay men. They were marked as carriers of diseases “they earned” through bad behavior and cruel choices.
Many of us were taught back then — and even today — that those with AIDS were living against the morality of God and the norms of heterosexual and non-drug addicted society.
When we first moved to New York 20 years ago or so Janna had a very good friend who was Black, Deaf and Gay and while some feel those are three big strikes against you in mainstream America, he was also infected with full-blown AIDS — though most of his straight friends just knew he “was really sick” — and he was also homeless even though he had a job and he lived on the subways at night running on the A-train where, from end-to-end, he could sleep for two hours at a time before getting tossed off by the transit police.
We visited Janna’s friend in an apartment-style building run by nuns.
Everyone had an individual bed and a window air conditioner and that was the extent of their bedroom. It was only years later I realized we had visited an AIDS hospice where indigent AIDS patients were taken in by the Catholic church to be given medical care and a safe haven as the end of their lives rapidly approached.
I remember seeing Janna’s friend sitting in his bed stick-thin and profusely sweating even though his room was chilly. He wanted spaghetti with “lots of sauce on it” and when you aren’t born in New York you quickly learn spaghetti in New York is mainly pasta with a dab of sauce.
If you’re from the Midwest — as were we all — spaghetti is 90% sauce and 10% pasta. Janna’s friend wanted so much spaghetti sauce that “the pasta cannot breathe” and we agreed to get him whatever he wanted.
Then he told us he needed our support. We told him he had it.
He opened his arms for a hug before we left to get his spaghetti and when I bent down to give him a hug, a single droplet of his sweat dripped into my ear canal.
I am ashamed to confess now that back then internal alarms began to go off in my head that I had just infected myself with AIDS and that in my presumed kindness I had just ended my own life.
The privilege of perspective is a self-damning beast.
My heart was racing with my mind as I wondered what I had done to myself. We fed him his marinara sauce and a few strands of spaghetti and then left when visiting hours were over.
As we rode home on the subway, I told Janna about the droplet of his sweat that was now in my ear canal. She didn’t think it was a problem. She was surprised I hugged him. I told her I was too, but it was an impulse I could not control.
He looked so forlorn and so desperate that I could not refuse the offer of his open arms.
That was the last time we saw Janna’s friend alive.
The next day, trembling and terrified, I decided to call the Gay Men’s Health Crisis hotline to get more information about HIV/AIDS and how it is transmitted between people.
When I called the GMHC hotline and told my “sweat droplet into my ear canal” story the guy on the other end of the line told me, rather dismissively, that HIV/AIDS was not transmitted through sweat. I thanked him. I felt selfishly relieved.
Non-Infectious “Bodily Fluids”
* Saliva
* Tears
* Sweat
* Feces
* UrineThese fluids and substances cannot transmit HIV. Sweat contains no HIV. The other fluids do not contain enough HIV to infect another person. This is regardless of how they get into the bloodstream. No cases of HIV transmission have ever been documented as a result of these substances.
I share this story to demonstrate how fear and ignorance clasp to each other to drive outrageous emotion and a loathing of choices that were made with one intention while resulting in another. I’m sure the GMHC hotline guy was in some way disgusted with my worry and the selfish intent of my inquiry, but I was grateful for the information and for the access to facts that were not readily available in the mainstream media at that time.
There was no “internet” back then in the late 80’s and there was no reliable way to find instant authoritative answers to questions about HIV and AIDS and transmission and infection and that is the point of remembering this story today.
AIDS ravaged — no, decimated — an entire generation of Gay men who, if they were alive today, would be in the prime of their 50’s and 60’s.
As AIDS was wiping away a generation of men, few people outside the Gay community cared enough to try to figure out what was killing them.
There were many people who felt AIDS was God’s curse against the Gay lifestyle and these Gay men were finally receiving the fate they earned by going against God’s Way. Most of us know that accusation is false and cruel.
HIV/AIDS is not and was never just a “Gay Disease.” Here’s a list of HIV-positive people you may already know.
God’s Love We Deliver was created in 1985 to deliver meals to people living with HIV/AIDS who
were too weak to prepare their own food.
Private people had to step into the crevasse that public funding and the federal government failed to bridge.
The only way the Gay community back then could get any help was to help themselves. ACT UP (AIDS Coalition to Unleash Power) was created in New York in 1987 to be a loud, active voice to protest the lack of funding and to fight the stigma that was attached to HIV and AIDS. “Silence = Death” was, and still is, the rallying cry of ACT UP.
As we live, it is our duty to remember those who were wiped from the earth too soon and against their every wish.
The Arts, especially the New York theatre community, had an entire generation of Artists removed from the promise our lives in a short period.
Those of us left behind must always fight to remember to carry on the inspiration of their brilliance in their loss and their love and the genius of their mind as we knew it — but you can never stop feeling it really isn’t ever enough and that one good thought and a slew of proactive positions cannot replace a person or a group or thousands of people who perished because of ignorance and fear and, frankly, a lack
of federal research funding.
AIDS was only taken up as a noble cause to fight by the mainstream media when Ryan White, a young boy who suffered from hemophilia, contracted AIDS and died.
Ryan White somehow made it “okay” to talk about AIDS in a non-threatening, mainstream way, and many around Ryan feel he was given to this earth to carry the AIDS message forward in a way that would light up the world from darkness. Here’s what Ryan said about the hatred and fear directed at him:
I came face to face with death at 13 years old. I was diagnosed with AIDS: a killer. Doctors told me I’m not contagious. Given 6 months to live and being the fighter that I am, I set high goals for myself. It was my decision to live a normal life, go to school, be with friends, and enjoying day to day activities. It was not
going to be easy. The school I was going to said they had no guidelines for a person with
AIDS.The school board, my teachers, and my principal voted to keep me out of the classroom even after the guidelines were set, by the I.S.B.H., for fear of someone getting AIDS from me; by casual contact. Rumors of sneezing, kissing, tears, sweat, and saliva spreading AIDS, caused people to panic.
Ryan carried his message of education and understanding with him until he died at 18. He lived 10 times longer than his original “death sentence” diagnosis. Ryan White was a miracle in a boy’s body. For those of us in our 30’s and 40’s, we know the past by recognizing how our future has been crushed by HIV/AIDS.
We lived through the pain of losing friends and their happiness. We have seen alive people one day wither into bony ghosts the next. We understand the eeriness of
living and we comprehend the notion that life is cheap and health is fleeting.
Today, “Riding Bareback” is an appealing notion among some young Gay men. That phrase means having anal intercourse without using a condom.
Riding Bareback is ghastly to all of us who lived through the AIDS ravage, but those young men, full of wonder and bravado, rationalize their behavior by claiming if they get HIV there will be a cure before full-blown AIDS hits. Each generation creates it own fools.
There are some people — “Bug Hunters” — who actively seek to have unprotected sex with HIV-positive people because they want the thrill of getting infected.
Each generation creates it own folly.
There is a casual carelessness today across all strata of sexuality in young people who do not believe HIV and AIDS are not the dangerous killers they used to be and in that ignorant mindset they are tempting their death and disgracing the memory of those before them who fought for their lives and lost.
One only need turn to a shocking statistic from the Population Resource Center to discover HIV and AIDS are alive and well in Africa alone:
At the end of 2001, there were 28.1 million sub-Saharan Africans living with HIV/AIDS. The overall prevalence of HIV among sub-Saharan African adults, ages 15 to 49 years, is estimated to be an astounding 8.4 percent.
When we are frightened and when we do not understand things that loom before us, the easy path, the darker road, is to find someone to blame and then demonize them even though the fault and the blame may hide deeper beyond the choices of personal control or the wants of group advocacy.
If you blame a community or an entire culture for the ills of the world — even though your own hands are unclean — you are able to change the dynamic of an open discussion and make a narrow national agenda of “us against them” by goading the good others into thinking “together we must defeat evil.”
When you hear national leaders marking cultures and the personal decisions of individuals as dangerous and how those minorities are in need of correction and how they shall be cleansed through acts of force, isolation and phony signs of strength — stop and ponder why that demonization is necessary and wonder why a threat against you must be created to scare you into silence and inaction.
Ask aloud if there is a better way than pushing people inside themselves and their communities where they are forced to either crumble alone or fight back together against the majority self-interest.
Question the greater good and the healthy living of everyone and not just the some of us.
Dare to strike out against hate and to decimate back those who actively choose to wound the weak in the name of the wicked.
To live is to remember and we must never forget the unforgivable sins of the past that we all perpetrated against the innocent and the unwilling in the name of safety and sacredness.
HIV/AIDS is still a scary thing.
My mom is a nurse and I remember overhearing her and my dad talking about a time when she was accidently jabbed by a needle while working with a patient.
It wasn’t something that she talked about a lot with me, but I could tell it was a tense time until the tests came back and everything was determined to be okay.
I also remember going to the hospital to drop something off for my mom when I was in high school and getting into the elevator with a tall skinny guy pushing an IV stand. I didn’t look at his too closely, but he was fairly young and had purple sores all over his face.
I don’t know for sure if he had shingles or something else, but I was secretly anxious about being in a confined space with him riding up a couple of floors. Even in the late ’80s, I didn’t know much about the disease, except that I didn’t want to get it.
My wife told me the story about a patient she had when she was working in the hospital earlier in her career. He was HIV+ and was a friendly and bright guy.
Everyone who came in contact with him liked him.
The sad thing was that all of his friends and family abandoned him when he told them his diagnosis. Nobody he called ever wanted to come and visit him.
He was left to die alone in the hospital with only the nurses and staff to talk to.
I remember waiting to get the results back for a HIV test.
I consider myself a low risk person, but it’s always good to know for sure.
I figured since I always get all other things in my blood checked — cholesterol, lipids, and all of the other bad things that can clog your heart routinely checked because of my family’s history of heart disease — I figured I might as well get “the test” as well.
The test came back negative — much as I expected — but it seemed like seconds streched into hours when I was waiting to get the results read to me in person.
Hi Chris —
Yes, we lived through the “AIDS terror” that was born out of not knowing and we weren’t even in the frontline threat for contracting the disease.
There were few experts while we were “growing up” who really knew the what and the why of HIV and AIDS. It was an invisible monster waiting to eat you alive in the form of the dead and dying. It was a living horror story.
I admire nurses and others who tend to the ill and the dying. It is quite common for HIV and AIDS patients to be abandoned by their families and friends even today because sometimes that infection is the first verifiable sign of a sexual identity.
Our generation was mostly closeted when it came to being “out” about who we were and what we stood for if it was not part of the mainstream. To step forward an announce you were homosexual was tantamount to a death sentence of ostracism and social silence and back alley ambushes – let alone any sort of viral infection.
I purposefully used “Janna’s friend” in the article today because I did not feel comfortable revealing his name. I do not believe in “outing” people and I especially no not believe in “outing” the dead.
I think there are some in that fellow’s immediate family who do not know the real reason behind his death and this blog is not the appropriate place for them to learn it for the first time.
A friend of mine has lived with AIDS for the last 15 years, contracted from his partner who died over ten years ago before I met him.
He actively manages and stabilises his condition with the help of a specialist back up team of doctors. His personal key to survival is to know his body inside out. He watches what he eats very carefully and has learnt to recognise the symptoms of all the knock on ailments from which he suffers – such as chest infections, arthritis etc. He can go to his doctor and say “I am getting a chest infection – can I have “X” antibiotics now” – and get them , instead of waiting for the cough and infection to manifest itself like the rest of us have to do.
His life has been made considerably easier to manage with the new drugs that have become available over the years. In the early days he was taking incredible amounts of pills just to stay alive – this has now been reduced to a dozen or so a day.
Some more statistics from http://globalhealth.org/
Thanks for the link, Nicola!
The story of your friend is amazing. He has full-blown AIDS and not HIV and has lived for 15 years? That’s amazing!
I know Magic Johnson is an incredbile case of HIV infection and apparent “remission” but he was also able to afford the best medical care and conditioning available:
http://www.sciencecases.org/aids/aids1.asp
I will be asking him the very same question tonight. I suspect it is AIDs because he has had the serious problems that mark the transition from one to the other. When that transition occured I am not sure – I will report back !
I think he is also very much in “remission” – or very well controlled and because of that and his personal determination – he is still very much with us. He frightens us at least twice a year with severe chest infections and has continual problems with his bones, joints and teeth.
I am so glad you are his friend, Nicola. If he were in dire danger I know you would swoop in for the rescue.
Please share with us whatever you find out. I am fascinated to hear his story and to learn his future diagnosis!
There is a network of us – we all back each other up – he even does Xmas on rotation !
Ah! So wonderful. So rare! I love your network, Nicola!
I do too – its a wonderful combination of “looking after ones own” and knowing a man who can (taken from the Automobile Association adverts for the AA Relay/Recovery service in the UK).
It’s comforting to know there are places in the world where people still care enough to look out for each other even if it may be, at times, inconvenient.
I saw this scrolling across my screen on my RSS Ticker extension for Firefox on my CNN news feed:
From CNN:
If there’s anyone who can figure out how to beat AIDS from a planning and financial angle of attack it is Bill Gates. It will be the crowning achievement of his lifetime if he can help contribute to a cure.
This is a touching post indeed. In the UK, the whole HIV/Aids thing as a whole, became more acceptable to talk about in general after an act by one wonderful kind lady named Princess Diana.
She was photographed visiting an Aids hospice and actually holding hands with an Aids Patient. The public was in an uproar. People were saying things like Omg, she held his hand, what if she gets Aids?? and things like that. People were so ignorant it was frightening. But it’s not all ignorance. If the governments don’t talk about it, and they don’t fund research, and better cures, and they don’t put money into creating safe places for people suffering from these terrible diseases, then people will always worry, they won’t get the information they need in order to make an informed decision.
Of course, things are better these days, but there’s still such a long way to go. People are still ostracised from society if they admit they have HIV/Aids. It’s like a mark of death. People still need to be better informed, but there are those who ARE informed and still choose to shun those who suffer. It’s the same as being racist. It’s a terrible situation, and ot one that’s likely to get much better in the coming years.
Thank you for sharing your tending and caring comment, Dawn.
You’re right that Princess Diana did a lot of good during her short life. She inspired people upward to greater deeds by setting a fine example.
She was also brave to take a loving stand against the prejudice of AIDS. Her actions spoke louder than the hateful words of others.