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Mike 03 Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Jan-24-09 07:41 PM
Original message
Our Shameful Past and People who've Died of AIDS Anonymously.
Edited on Sat Jan-24-09 07:49 PM by Mike 03
This is the third book I've read by a doctor who works exclusively with patients with terminal disease (on Edit) or someone who works for Hospice, and the stories in these books are so frightening, and so depressing. I am guessing there are few things worse in this world than having been suffering from terminal disease, AIDS, in the mid or early 80s.

It is so sad and so shameful, and I can't help but think of my favorite writing teacher during that period, who was diagnosed, and we were told (only after the fact, by rumor) that he was rejected by even his own family and died alone. It was horrific to hear that, like you cannot even believe.

His students would have been there for him in every way possible. He did so much for us, we would have been there for him. He was beloved.

This book I am reading now (different than the one I posted about earlier) is called "What Dying People Want: Practical Wisdom for the End of Life." And there are so many stories from the early 80s about people suffering and dying (usually alone) from AIDS. Even rejected by their own family, or even people who LOVED them but were afraid to touch them. And touch is so important to give to someone who has a terminal illness.

At least some sensitive and caring human beings have thought enough about this to put it down in writing, and as great as "And The Band Played ON" is, maybe there could be a book that focuses on how isolated, lonely, terrible it was to have AIDS in the early and mid 80s. I think this is a chilling and sad and horrific chapter in the history of our nation, and that we need to own up to our confusion, but also our guilt and failure--TOTAL FAILURE--to be with these kind and amazing human beings as they passed on. We totally let them down, in our ignorance.

And we also hurt the ones who loved them, by denying them the chance to say goodbye. To this day, I think about my writing teacher and how I was stonewalled completely about knowing what was going on with him.

What a horror.

How can we make this horrible wrong right? Can we?
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Amerigo Vespucci Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Jan-24-09 07:47 PM
Response to Original message
1. We need to be responsible and informed moving forward...
...and compassionate and non-judgmental while healing those who are in need of healing.

There should be no guilt.

There should be no judgment.

That's what I think.

And I am a Christian, for what it's worth. We're all not Rick "YOU PLAY, YOU PAY" Warren.

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Mike 03 Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Jan-24-09 07:54 PM
Response to Reply #1
3. I wonder if there is any way/place that we as individuals can pay our respects
to GLBT people who have made a huge difference in our lives. Or possibly even discover what became or has become of them?

Over these past few months, this has become important to me.

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davidinalameda Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-26-09 01:53 AM
Response to Reply #3
8. one way you can honor them
donate a book or something like that in their honor to your or their local library

most libraries have special bookplates that they'll use and whomever checks out that book in the future will see their name

it's a way to keep their name out there for a while

do something to keep their name alive

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givemebackmycountry Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Jan-24-09 07:53 PM
Response to Original message
2. Mike, that's a great post and you ask a great question...
How can we make this horrible wrong right? Can we?

Sadly, I think not.

Every time I hear some "Christian" stalwart demonizing gay people-
Every time I read about a gay person being targeted and getting the shit kicked out of them-
Every time I see an elected official cast a vote that will intentionally make their lives more difficult-

What ever happened to "live and let live"?

My support is unwavering for all of my brothers and sister gay, straight or what ever.

Maybe things will get better now that the monkey is gone and soon to be forgotten, forever.


But, maybe isn't good enough.
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Mike 03 Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Jan-24-09 07:57 PM
Response to Reply #2
4. Luckily, I'm not a Christian, but I know there must be some place or way to
express how much I miss those GLBT friends or mentors of mine who have passed on, or at least find out what happened to them. At least that is a huge hope of mine.
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pinto Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Jan-24-09 09:18 PM
Response to Original message
5. Sorry for your loss.
It was surely and decidedly a hard time.

Yet, that said, I have many bittersweet memories of innumerable kindnesses, ranging from hospital housekeeping staffs, to administrative folks, to nurses, to doctors, to friends and family that saw folks on their way. With care and comfort, humor, sadness and compassion.

I know the horror stories. I was there. As were they. Here's hope that your teacher had some of them by his side as well.

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Marrah_G Donating Member (1000+ posts) Send PM | Profile | Ignore Sat Jan-24-09 11:55 PM
Response to Original message
6. You cannot change the past
But you can learn from it. You can do your best to make sure it is not repeated.
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Moloch Donating Member (1000+ posts) Send PM | Profile | Ignore Sun Jan-25-09 01:44 PM
Response to Original message
7. Thanks for the book recommendation..
ATBPO is one of my favorite books ever.. One of the best written and bravest books of all time. I will check out the other one.
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HillbillyBob Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-26-09 06:51 AM
Response to Original message
9. I was 'there' my then partner and I had a roommate to help meet the bills
as we were all in low paying jobs. This was fall 84 Bob started losing weight and acting strange. We tried to get him to seek help we had an idea of what it was, I had already gone through onset symptoms myself. We were still not sure was GRID was then either. We tried to get Bob to go to the hospital. In those days the hospital would not even see him. He locked himself in his room and it turned out that he had both pneumonia and dementia, he was taking things out of the house that were not his.
We called his family at the emergency number he left. They refused to bother.
Finally after about 4 times of calling for an ambulance they came and had to knocked open the door to his room.
He died a few weeks later in ICU , they would not let us in to see him. I don't thing he was even aware enough to know if we were there or not as he was unconscious or delirious if he was awake.
His brother came to clean out his room after he died and literally threw everything in his room away. Turned out a bunch of our pots and pans and silver ware were in there too. I don't blame Bob as he was out of his head, but the brother instead of asking about the pots and pans (Bob kept his own in there too and washed everything in bleach).
I have been diagnosed since 85, I have had my ups and downs and have been fortunate for the most part that I had friends as my family did not bother with me until a few years ago.
I really despise Kreestians, the pastor from the church i grew up in told my parents at the time of my diagnoses that It was gaaawds weell and that I would die and go to hell, and the sooner the better.
I went to 15 funerals in Mar 96 and many many more before that.
I got to the point where I was suicidal, and could not bear to go to another funeral for several years. I have watched friends die and their surviving partner get evicted from their homes because the 'real family'come get wills and deeds cancelled or overturned and the survivor thrown out like garbage while the family steals all they have worked for together. One case a nephew who was only related by marriage had a judge issue an eviction on the home of one partner who was in final stages of AIDS with cancer he only had a few months to live and he got gas from the lawnmower shed doused the house and himself and set fire.
The son of a bitch nephew had a fit cause he did not get to steal a free house.
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MuseRider Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-26-09 09:27 AM
Response to Original message
10. Do you have a
local AIDS Project or something similar in your community? If so volunteer. Here they have certain areas you might want to work in and they will train you to do it. As an old ICU nurse I can tell you that there is nothing harder on your own emotions at first than helping someone while they die. Still, I can look back to many who had no one who I held as they passed away. I feel honored to have been there and have no problem stating that I will always be there if I know that someone is alone and dying. It would be a wonderful way to honor your teacher. Comfort to another being should be what we are all about and I am teary reading your story and your compassion for others. Go for it. If you learn it and can deal with it then you will never feel more honored and rewarded.

Also you could just volunteer for your local Hospice. We all die and many alone even if they do not have AIDS. Anything like that you can do in honor of your teacher or for those who died alone. If it is in your heart they will know. :hug:

Be warned before you do this. Not every death is peaceful and easy. Just saying. There are many who have never seen that so if you have and are aware of this disregard this warning. It is still a right and compassionate thing to do.
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Neecy Donating Member (1000+ posts) Send PM | Profile | Ignore Mon Jan-26-09 09:28 PM
Response to Original message
11. I was there and yes, it was bad
I lived in San Francisco through the worst of it and at least within the lesbian community I don't think we had a shameful past. Many of us, myself included, delivered food, movies, sat in hospital rooms with friends and co-workers and pushed for more research money at a time when Reagan wouldn't even pronounce the word AIDS. It was a horrible time and anyone who was there has horrible stories to tell.

The government's willingness to let our gay brothers die - and the 'religious' response that it was God's punishment - definitely figured into my response to the whole Warren thing. I can't even put it into words but there are still so many scars from that period that politicians now need to earn my trust, and inviting Warren set off a thousand red flags for me.
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pinto Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-27-09 06:17 PM
Response to Reply #11
13. The lesbian community in my town was one of a number of strong wings in a tough time.
Fearless or hesitant, they showed up, they stayed, they laughed and cried. They truly had our backs in it all. I'll never forget that.

I see some of the 'old timers' around town these days. We've all aged and while much of the picture of AIDS has changed, those deaths remain a vital part of our lives and our history.

Yet we can't help but smile with one another, here and now.

"Hey, you little shit, you still kicking?" and a high-five.

We were there. Life goes on.

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closeupready Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-27-09 05:22 PM
Response to Original message
12. I suppose in their dying moments, these people implicitly understood why
there was an irrational fear of contagion to a new, frightening, fatal disease, but it still must have been sad for them that the ones they loved weren't there for them. But at the same time, in the end days of AIDS, there is much physical pain, and death brings release from that, so it probably isn't quite as bad for them as the thought of them dying alone is for those of us who remain alive.

I did say goodbye to a friend of mine on his deathbed, and thank God one of his other friends went through his rolodex and just called all his friends (he had tons) to say he wasn't probably going to make it through the night - I am glad that I was able to do that. He was a true friend who helped me enormously when I was particularly down at one point.
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Mike 03 Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-27-09 08:57 PM
Response to Reply #12
14. I'm so sorry for your loss, and that had that experience of saying goodbye to a friend
on his/her death bed, but that is the kind of courage I desperately need right now.

Thank you from the bottom of my heart for sharing this.

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closeupready Donating Member (1000+ posts) Send PM | Profile | Ignore Tue Jan-27-09 09:35 PM
Response to Reply #14
15. I'm glad my experience is comforting, in a small way.
:hug: If you find later that this painful memory gets to you and you want to work it out more, you need only PM me. I'm not a counselor or anything, but I'm happy to listen and help, if I can. :) :hi:
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