Tuesday, August 8, 2017

What a shame

It was like some huge Science Fiction/Disaster film gone wrong except...we are still waiting for a happy ending.

I had moved to Glendale in the early 1980s and had a busy schedule-I always filled my days too full back then.

I was finishing up a small theatre run of Side by Side By Sondheim, my Dad was sick, I was looking at a new "real" job working for a corporation-just lots of new in my life.

I noticed a lot of people I knew were not feeling well, nothing specific but weird.

A friend of Aunt Mildred's died at City of Hope in the late 70's of a strange form of Cancer.

In San Francisco they were talking about ALIEN viruses , strange imported tropical diseases, the CIA-all sorts of conspiracy theories...

My friend John was still working at Universal Studios Tour and he was worried that there seemed to be "something" going around-lot's of people that I knew were still at the tour...

It seemed to only be targeting men and of course that in itself was reason for even more conspiracy talk and wild rumors.

A fellow I knew had asked me to do some art work for him and when he dropped by I notice he had dark brown blotches on his arms and one on his cheek-when I asked about them he said they still weren't sure but it might be some "Greek" disease...he didn't seem sick it just looked scary.

As time progressed suddenly people were very sick and even started to die.

A friend was in the hospital complaining of severe headaches and other symptoms.

Lot's of the people I knew worked for Hollywood Presbyterian and Children's Hospital on Sunset Blvd.-Lucky for them they had good coverage and often the hospitals just put their employees who were ill in for tests quickly.

"David" my sick friend turned out to have a fatal infection inside his brain cavity of some kind of strange fungus.

Kaposi Sarcoma became a common disease-a skin cancer that was for many years rare and confined to the Mediterranean area was popping up all over.

Pneumocystis Pneumonia also was common and doctors were talking about GRID (gay related Immune disease): they thing was, YES, many gay men did have the disease but it was also hitting drug addicts, people with blood diseases...its was scary, didn't make sense and no one knew how it was transmitted...one brave soul ventured that if was air borne the human race could be doomed.

In 1982 the disease officially became AIDS - Acquired Immune Deficiency Syndrome.

The disease was traced to a virus and it was known that the virus was mutating-there were at least 2 strains HIV 1 more virulent than HIV2.

More than anything else-people were terrified-with a lack of information, contradictory tales from many sources and a code of silence from the white house the numbers of sick people rose and the quantity of real solid information dwindled.

I found myself visiting hospitals more than any other social activity.

Conditions in some places were horrible-since patients were sequestered, quarantined urban hospitals filled quickly.

Patient care was spotty: the condition came with nasty side effects like diarrhea and the drugs acerbated this problem-also vomiting, night sweats-it was horrible.

Hospital workers refused to change or wash patients-in some hospitals patients meals were delivered to the door of the room where the tray was pushed across the floor into a general proximity to the bed....these people were SICK they couldn't get up to get a tray-many were too weak to lift the meal trays.

It became obvious that it was up to friends and family to do what they could for people they knew and cared about.

So I changed my friends, got them fresh hospital gowns, fed them, sometimes with other friends, sometimes alone.

One memorable night I was struggling with a friend who was about 6 foot 4 and although he had lost lots of weight he was still a big fellow-i was huffing and puffing and my back was killing me, I was tired and angry and disgusted and guilty; finally I dropped into the bedside chair and just cried...a very kind man came to my assistance and together we made my friend clean, comfortable and fed.

I found out later that he was one of the most prominent brain specialists in the country.

Many of the patients had been abandoned by their families especially in cases where they had been living closeted/under the radar lives-a diagnosis of AIDS was a cruel way for the family to be informed.

MANY drugs were tried with some success but also the costs were enormous and often not covered even by those with good insurance.

At the height of the plague I had 26 friends who were seriously ill and in and out of hospitals-all of them would ultimately die-since I was not sick I took on a lot of responsibility and besides general care I arranged funerals and other services as they became needed.

I learned how to deal with the Veteran's Administration and found one man with a sensitive ear and broad shoulders-he helped me when many others would not.

This was also a time when one heard things like "It's killing all the right people.", "It's God's Wrath on the sinners", "They deserve to die...".

Later when children, women and general population members, even a few nuns became infected did the slurs diminish but the anger and vitriol was still directed toward the Gay community.

If you are interested in what went on at this period I recommend "And The Band Played On" which was produced I believe by HBO in 1993-a docudrama it gives a fairly comprehensive overview of this time in history.

Other films like "Philadelphia" with Tom Hanks and "Angels in America" also offer views of life in the time of HIV/AIDS.

Eventually a cocktail of drugs was found to work best but there is still no cure or vaccine against the retrovirus.

As of 2016 almost 700,000 people have died of AIDS in the United States-the disease is still running rampant in Africa, India and other 3rd world countries.

Death rates have gone down but not fast enough-the disease was declining in the US but has started to rise among young people (under 20) and seniors (over 55).

Since the virus can lay dormant for several years unless people are tested they may not know they are infected: Immigrant populations, minorities and ethnic groups such as Muslims where taboos against homosexuality are strong are at high risk.

The virus has continued to mutate and many specialists feel that what started as a virus in nature has been tampered with; perhaps even weaponized...and there is still the chance that it could mutate into an airborne strain.

Since bisexual men can carry it to their female partners and the disease has been introduced to the general population via blood transfusions it is important that everyone gets tested and regularly especially if you are sexually active (at any age).

Many public health clinics and almost all Gay Community Centers offer free or low cost testing and usually do a mouth swab first which is painless and initial results are given very quickly and confidentially.

We are beyond throwing epithets at each other and blaming people for how badly the epidemic was handled-most people don't remember that the Reagan Administration refused to even say the name of the disease in public and mostly ignored it.

IGNORANCE is a horrible thing it feeds the fire of PANIC with so much unknown people need to understand that we must remember but perhaps the time of blame is over?

We have so much more information now but we cannot rest until we have a vaccine and a cure-do all you can to make sure your Senators and Representatives know your feelings at both the state and Federal levels.

People still die from the disease it just takes longer and the medications are still far too expensive-the tradition of Big Pharma adding in the costs of R and D to each dose raises a pill that could be produced at a modest price to a platinum drug and this isn't only for AIDS meds its for any disease in the USA....people in other countries often get drugs for a fraction of what we pay here.

The effort you put forth may benefit a member of your family.

My Mother couldn't understand why all her friends were dying when she was nearing 80; when I reminded her that at 40 many of my friends were already dead she didn't seem to connect to the concept.

Those of us in the ARTS community especially were hit hard by AIDS related deaths and a syndrome called AIDS Related Isolation Syndrome has been recognized-the fear of rebuilding a social circle only to find it taken away from you by disease.

Better to be alone than to live in fear.

If we all work together we can end this horrible disease in my lifetime----I would really like that.

Not only for myself and those who have passed but for the children of my nieces and nephews and all the children yet to come...

1 comment:

  1. What a great informative message for all to read. I have lost several friends to it. It never gets easier. I hope people get more informed on this disease. I actually knew Rock Hudson when he was going thru it. I pray they will find a cure for it.
    Many have taken their life's because they don't have the faith they'll make it.
    I'm praying for all that a cure will become available to everyone who needs it. Great article Rick.


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