As many of you probably know, 1 December is World AIDS Day. There is a thread in the P&R for the political aspects of the HIV pandemic. That thread can be found here:

http://www.prince.org/msg/105/124277

I would like us to have a personal thread as well. So, if anyone would like, share your stories about HIV and its impact on your life and world.

If nothing else, at least spend some time today talking/thinking about the devastation this disease has brought. Also, think about signs of hope and inspiration that this pandemic has brought about, I know I have seen many.



...I have to work for a minute now, I'll be back soon with some of my thoughts and experiences...

I really can't believe HIV cases continue to increase. I was amazed by the latest statistics. I also think we should have a little thought for thouse outside western medicine too. Milions of £/$ has been put into HIV/AIDS research and very little gets to where it is needed most. HIV now kills more people in some african countries than anything else.

great thread - STICKY

For World Aids Day today I will be dining in a resturant who will give 25% for each meal to the House Of Ruth here in Louisville, KY who helps peeps living with HIV/AIDS. I did this type of volunteer work for 10 years, and times have changed but the disease is still devastating. I have lost friends and family members and it doesn't get any easier. As long as I live I will support AIDS charities. On Friday I will be going to a auditorium that will be making new AIDS quilt panels, I will be signed up 150 names of peeps who I know have died from the disease. I am also supposed to get with a guitairist because I have been asked to sing a song. I have chosen Bridge Over Troubled Water to sing.

rachel3 said:

Mach said:

40

Thanks for posting Mach

PREDOMINANT said:

yeah ... sad




my pleasure !

I don't have many personal recounts from people I know with AIDS and/or HIV and I am thankful for that. I think in certain countries and walks of life we become complacent about issues such as this. It is good to refresh ones mind a little, just because we might not see it on a daily basis, it does not mean that it has gone away. And from the data disclosed so far we are no nearer to making this disease “go away”.

I have colleagues who work in and around HIV research. They face a constant struggle for funding and any work they try to publish is often bounced back by the “big boys” profit driven research that hampers the peer review process and could affect beneficial clinical data being put to use.

IT reminds me of the unfortunate situation I find myself in. I was told by a senior while I was still a student that “we will never cure cancer, not because it’s to difficult but because more people are employed by cancer research than die from cancer every year”

If you are giving money to HIV/AIDS research – make sure it won’t be wasted. There is so much political play even before the politicians get hold of it.

Just my thoughts

I warn you, my 'thoughts' turned into more of an essay

As a gay male, I've been conscious and educated about HIV/AIDS since my adolescence. In the mid 90s I had to do a volunteer project for a class I was in. I decided to volunteer for an "adult foster care home" for people living with HIV. At that time, this was basically a hospice house. We had 4 residents living in a regular old house. The house was staffed around the clock with at least one person who would cook, clean, provide emotional support and medical care to the residents. The house allowed people to die in as dignified a manner as possible and in a comfortable setting, not a hospital or nursing home.

The decision to do this volunteer job was easy. I figured, I'm a gay male. I am either going to get HIV or will eventually know many people with HIV in my life. I decided, it was a good chance to do some good work and become more educated on the disease and its impact on people.

Of course, my school project ended and I continued to volunteer. Eventually, I was offered a job at the house. I worked there in varying degrees of part-time to full-time to on-call and so on for about 8 years. I watched as our one house became two houses and then eventually joined with other existing houses as one entity. We now have 7 of these houses in MPLS serving a total of 28 people at a time.

Since I stated doing this work early on in the advancements of Western Medicine, I witnessed first hand the changing impact of the disease (in the US). I started working at a time when we constantly had 4 residents actively going through the dying process and watched it slowly to change. Now, the houses are often transitional houses, for people who become very ill, need a safe stable environment to heal in while finding the right med regimen and then return to independent living. Of course, people still are dying, just not in the magnitude of the earlier days (again- in the U.S.)

I have many intense memories from this work. Sitting alone with a person while they die is just something I can't put into words. In a strange way, I feel I was blessed to be allowed to be a part of those experiences- to help make dying as comfortable and peaceful as possible for many who had already lost so much. Also, these experiences made me examine myself and my life and make changes in the way I live and view life. I owe much to these people.

One of the most powerful experiences was looking through photo albums with our residents. With multiple people, I would be allowed a glimpse into a life they once had. Sadly, almost EVERY person in the photographs had died from AIDS in the late 80s/early 90s. It was just sad and unbelievable and made me committed to the work.

Because of the advancements in treatment in Western countries, today's youth won't have this experience. Clearly, this is good as it means people are surviving. On the other hand, I think this is one of the primary causes for the complacency now seen towards HIV. Many younger people in these countries have forgotten that this disease kills.

(I'm almost done now )

I no longer work in the homes. After 8 years + of this work, I was ready to move on. I was ready to help in a different way. So, here I am, working as a case manager (social worker) for the MN AIDS Project. Two of the clients I worked with have passed away this year, so the deaths do continue. On the other hand, I've seen some truly inspiring individuals. Women with children who do everything they have to do keep their family together and keep their health intact. Newly diagnosed people who in the space of a year can go from the depths of depression to a place of hope and understanding and have used their diagnosis as a "wake-up call" to be healthier and live healthier. Again, I am lucky to be allowed to be part of these experiences and these people's lives.

One final piece to all of this for now: it was a little over two years ago when HIV made another inroad in my life. As I suspected in the mid 90s, close friends and old acquaintances began to get infected and/or divulge their status to me. This disease is not going away. My only hope is that everyone realizes this and realizes it can and will impact them. If not directly, we will all feel the impact as AIDS continues to decimate Africa and parts of Asia.

to all those infected or affected by HIV/AIDS

This time last year I was in South Africa and my wife and I spent some time with some friends we have out there visiting townships and hospitals all of which are devastated by AIDS. It was heart wrenching and makes you feel the real impact to real people.

As you know I was born in a generation of free love and all that shit..

In the late 70s, and into the 80's many of my friends developed this sickness that nobody knew anything about..

It was so hard, and heart breaking to see this big disease with a little name take so many of their lives...

To:

Margarito
Jack
Alex
Richard

I think about you guys every day... But I know that you watch over me. I love you.

to all those living with hiv/aids on this and every day

i have been committed to hiv/aids awareness as a part of my life for the better part of 15 years now. it started back in 1989, when a family member was diagnosed with hiv. since then i have been committed to the cause. i have known and loved many people, most alive and some not, along they way who have contracted the disease.

i was a volunteer as a massage therapist on the twin cities to chicago AIDS ride years 1-4. which (for those of you who dont know) was a week long bike ride, where riders raised money for th cause, and rode their bikes all the way from minneapolis to chicago. the 2nd year, my family member was a volunteer as well, and we tented together. those 4 years hold some of the greatest memories. the people who worked with me as therapists, the riders and all their stories, people who had lost freinds, family, and loved ones to the disease, riding in their name they way everything we did for that week felt like it was helping someone to live better. how my part as a massage therapist was helping people make their last miles of the ride possible....it was such a great feeling.

from 1992-1994 i volunteered at the local open arms, which is like a meals on wheels kind of thing.

from 2001-2002, i worked in one of the homes that endo was working at. that experience was sooo awesome. i loved getting to know the residents, and seeing another aspect of the disease. how it was actually affecting people. and how the times were changing with the meds that were being given. there can be alot emotional baggage that goes along with contracting the disease...and for those people to feel loved and accepted by all of us working there, regardless of their status.....was an amazing feeling. im sad that i cant be there now. the job i have now just doesnt allow me the time to have another job.

my heart and soul are so passionate about this cause. its such an epidemic, and i will always do what i can, for as long as i live.

i someday hope to do some volunteer work in africa, working with the third world epidemic, which is sooo much bigger than most of use realize.
[Edited 12/1/04 10:07am]
[Edited 12/1/04 10:08am]

endorphin74 said:

Endo, you've made the Mistress cry. What a beautiful story about the homes you worked in. I worked in adult foster care for several years (for the elderly, not HIV/AIDS) and words cannot express all that you gain and learn from that kind of experience.

Thank you for reminding me that there are truly beautiful souls around, doing the work of angels. Honey, you are an angel.

Violett

I came out a year ago, and the night i came out, my mom didn't seem to have a problem with it, it seemed more like she was relieved to hear me admit it. So then for so unapparent reason, she starts being uneasy about the situation. I have a gay cousin that was "missing" for 15 years because my aunt is one of those bible thumping christians, and instead of telling her he's gay and deal with her bullshit, he chose to run away. I don't run away from MY problems. So one night my mom comes downstairs crying and shit trying to convince to be straight i.e. "The bible says blah blah blah.." So i'm rolling my eyes and what not and she says "I'm scared you'll get AIDS" so i say "AND? it's the number one killer of black people in MY age group, yet you weren't worried before i came out, why now?" and she says "Because, you're cousin Lester is in jail and he's HIV positive" This feeling of apathy and concern rushed through my body. She's always been like that. She thinks if something happens to someone, it's going to happen to me. So i say "well, that's his fault. I'm not going to be like Lester" and she said "how do you know that?" and i said "i learn from other people's mistakes, see you in heaven" and i went to bed. So i guess now i can say i know someone with AIDS. And the ironic thing is, the last time i saw him was at my other cousin's furneral.

Like Darin, to me HIV and AIDS have been a major impact on my life and the way how I perceive sex. To me it was not a discovery, but more like pondering life and death, especially after losing some friends I used to hang out with in clubs in the late 80's. It made me acutely aware of the many dangers of interacting and I kinda reclused. Did not go out or venture further than my own small circle of friends.

That changed after embracing love and life again in the mid 90's.

The biggest impact AIDS had on my life was the loss of my first boyfriend, Richard. I had known him since I was a small boy, he was two grades up all through elementary school. But it wasn't after I went to high school that we kind of connected.

I was 13 when he first kissed me. It freaked me out so much! I did NOT want to be gay! I wanted to be like all the other kids, desperately so. But I always stood out, being overly sensitive.
He kept circling me. Always kept coming over to me over at the fair, held once every year. Just letting me know he was there. He knew, like anyone who would have seen me at that age who and what I was. An awkward little boy, obviously totally different from all the other boys.

After that first kiss I realised I was gay, but it took me two to three years to come to terms with the fact. When I was ready, Richard was there, at the fair and we kinda circled around eachother until he asked me for a ride on his new motorcycle....

And that was SO sweet, looking back. He was patient, never presured me. Got me confident about myself, my sexuality and my troubled youth. But our relation turned out to be imperfect. He was too much of a free spirit to be in a relationship and I needed him so much it was actually painful to be without him. Through the years we broke up and got together so many times....most of the times together though. Our relationship was passionate and would burn up every few months. But we could not stay away from eachother, spoiling ourselves for any other relationship with others we might have had...

Then, ten years ago now, he came to my house. We did not pursue a relationship anymore at that time, but we would have sex every now and then. He was totally panicked. He had had his test and he was positive! But that was not the thing he was worried about; he was totally frantic he might have passed it into me.

I tested negative but the experience got us so close together that we ourselves did not know how to call our relationship. Only a few months later he was diagnosed with AIDS. Really weird, as Richard was the most sports minded person I ever met.
He then started planning his own cremation and I helped until it became too hard. But I am glad I helped, as his disease was so frightingly quick. He was in hospital a few months later and only a few days later he went into coma.

That was something he had beens prepared for. In case he would slip into a coma he would never get out of, they were supposed to pull the plug. In this case, he had asked me to push the button, so to speak. He wanted me to be his angel of mercy, as he called it.

Hardest thing I ever did. No words can describe. How the machines were silent. How he kept on breathing, his body not wanting to give up until the last moment.

This is one of the things that I remember most when thinking about him being in hospital and it breaks me every time. Holding his hand. Feeling the life slip away beyond reach. My voice breaking while I kept talking to him, because I wanted him to hear my voice....

The silence that followed, the silence of a numb reality, is something I had to go through this year again, when my mother died of cancer. It is a hospital full of life, while you sit next to the one you love, lifeless.

Like I said, no words can describe. If you want to dig into those emotions, the soundtrack to this would be The Arcade Fire's In The Backseat;

i like the peace
in the backseat
i don't have to drive
i don't have to speak
i can watch the countryside
and i can fall asleep

my family tree's
losing all it's leaves
crashing towards the driver's seat
the lightning bolt had enough heat
to melt the street beneath your feet

alice died
in the night
i've been learning to drive
my whole life
my whole life
i've been learning

Mostly musically, lyrically it does not really fit.

Is it strange I understand the need for the educational part of World AIDS Day, but not need it myself? Not to remember Richard. Not to remember the threat of intimacy. I somehow carry that with me every day, every moment of the day something might happen and I think of either one, some good, some bad.

I do not need a special day to commemorate the death. But still, with this thread I somehow contributed. And in a way this day has helped me, by telling our story, shortened version as it may be.

oh gosh ... I don't know what's wrong with me today but I keep reading threads that make me very emotional. This is one of them.

Thankfully, I have no direct experiences related to AIDS/HIV.

I'm really touched, however, by the stories here ... and by those of you who have come into contact with the disease ... and even more by those of you who are helping, or have helped, people who are suffering.

God bless all of you.
x

I'd like to share two websites with you all...

www.46664.com ...this is a website affiliated with the Nelson Mandela Foundation which focuses on Aids throughout Africa

www.mercuryphoenixtrust.com ...this has been in operation since Freddie Mercury passed on 13 years ago of complications brought on my Aids

for all the millions of people around the world affected by this terrible epidemic

GooeyTheHamster said:

You are one strong soul, Gooey.
I gave you a guinness because there isn't an emoticon to convey comfort other than hug, hey, we need more expressive emoticons over here.....

PREDOMINANT said:

Besides the boff and boff2, you mean? And thanks, mate. I'l take the Guinness! Or three!

To me talking (or writing) about it works purifying. It helps me put things into place.

To all of you who shared on this thread.

Couple of random thoughts about an issue that I've cared about for as long as I can remember:

I was listening to Bono (of U2) a while back talk about this epidemic, and he said that we are at a point in history when people will look back at our lack of response to AIDS in Africa and condemn us; that we stood around with watering cans and watched a continent go up in flames. I think he's right. The developed world should be so fucking ashamed of ourselves for how little we've done, on every front, to help contain AIDS in Africa.

The thing that makes this disease so interesting on a sociological front, and tragic on a humanitarian front, is that the people who have been hit the hardest are folks that rich white people tend not to give a fuck about. The progression of the epidemic would have been totally different if people as a whole had cared about gay people dying in the beginning, and if people as a whole cared about poor black people dying now. This disease didn't need to get this bad. It became what it did because of prejudice, bigotry, and hate.

On a brighter note, I think it is absolutely beautiful how GLBT people have come together over the years to care for people with HIV/AIDS. Of course it's much less a "gay issue" than it used to be, and of course LOTS of straight people have helped fight it on every front, but it's still having a huge impact on the GLBT community. I think that gay folks just realized that the rest of the world didn't give a fuck that they were dying, so they'd better form a support system to take care of themselves, their lovers, their family, their friends. . . Of course the response within the community hasn't been perfect. But I think it has been remarkable nonetheless. It makes me proud.


Darin, thanks for this thread and for the work you do. It's inspiring.

www.thedetroitcrawl.org

Shame on me for not even seeing this thread. I need to venture into the forums and outside of the "My Org" page more often.

Darin does amazing work for the HIV community, and I see him working hard at it everyday of the work week! Thanks for starting this thread. Most of what I'd say has already been said, but it sounds like a lot of people here have contributed in many different ways to the fight against this disease. It truly does touch me to see the selfless work that people do to lessen its impact on society (if only our government would commit itself more to the fight).

I have several friends who are living with the disease, and I'm fortunate to have them in my life. Thank God that I've not lost any of them. The toll this disease has taken on many different communities is incalculable. This disease is tied in to so many different aspects of life: poverty, race, education, addiction, arts, sexuality, etc. Personally, I've seen its effect most on the poor and the arts community, and it is devastating the effects it's had on both.

I think I'm being realistic when I say that we won't see an end to the disease itself for a very long time, but I'm optimistic that the work that is being done on a daily basis will continue to positively impact all of those who are infected with and affected by this disease. It's always been an uphill battle, however, as long as those who are fighting the good fight continue to do so, I do think it will someday be a manageable disease for everyone - not just those that can afford it.

RipHer2Shreds said:

Before I was laid-off ( ) I did PR and Marketing the Department of Psychiatry of a local university and its practice plan. One of the programs I marketed was for Detroit's "Multiply Diagnosed" community...meaning that these people were diagnosed with HIV, currently abusing substances and also were diagnosed with a mental illness. Most of them were indigent and needed very basic necessities...the state/county only provided for so much for our clients...their medications and therapy. But, we wanted to make sure they had something healthy to eat when they were with us for a few hours...that they had a clean toothbrush...a comb, etc, etc...most of the things most of us take for granted. So, I often held drives within our organization to get the things that our clients needed. Our employees and doctors were usually pretty generous and that helped
I can't imagine having to deal with HIV let alone...substance abuse...let alone...a mental illness on top of that.

Very moving this thread. To all those living and affected by HIV and AIDS, you have my utmost respect and (even though i'm not particularly religious) prayers.