L in the Southeast

L in the Southeast
Location
Atlanta, Georgia, United States
Birthday
November 04
Title
Retired PR Director
Bio
I am a retired Public Relations professional who now writes purely for fun and catharsis. I covered most of my memoir-type pieces in the first three years here. Lately I have dabbled in politics, current affairs, pop culture and movie reviews. Life is my muse.

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FEBRUARY 7, 2011 10:54PM

Heart to Heart on the AIDS Quilt

Rate: 37 Flag

AIDS Quilt in D

        The AIDS Memorial Quilt, displayed in its entirety for the last time, on the D.C. Mall in 1996

The thirty-something clerk from the company's Central Files Department took the seat across the desk from me with the slouched shoulders and grim facial expression of a defeated warrior.  Darkened lesions were scattered on his face, his eyes slightly sunken.

"I've got it, Lezlie.  It's official.  I'm going to die."

Paul had AIDS.  He had just come from San Francisco General Hospital where he had been diagnosed with pneumocystis pneumonia, an opportunistic disease caused by a yeast-like fungus that attacks the human lung when the body's immune system is compromised.  It was the one manifestation of HIV/AIDS that provided its own public announcement via lesions like the ones dotting Paul's pale, gaunt face.

"What do you want to do, Paul?"  I asked.  "Are you telling me you are unable to continue working?"

Paul shook his head emphatically.

"No.  I need to work.  Please don't make me quit.  I'll go crazy if I don't have something to do with myself every day."

My head started an all-to0-familiar throbbing behind my eyes.  That's where the stress of those past several months made itself known to me -- daily.  As the manager of the regional office's Administrative Services, I had more than 100 people in my organization.  The majority of those were entry-level workers, and, since we were in San Francisco in the early 1980s, a good percentage of them were gay men.

In order to handle all the challenges the emerging HIV/AIDS epidemic posed in this cosmopolitan workplace, I read everything I could get my hands on about the disease.  Looking back from this 2011 vantage point, it is jarring to remember how little was known about the transmission of AIDS.  Conjecture within the ranks of my employees was rampant.  People were parking themselves in my office door every day expressing their fear of contracting the disease by working next to the Pauls of the world.  Hysteria was bubbling just below the surface in the offices.

Paul's face broke my heart.  Not his tell-tale lesions, although they were ominously ugly.  It was his fear that was written all over it.  He was fragile, physically and emotionally, and I was determined not to add to his suffering by having a knee-jerk reaction to his diagnosis.

That's when I decided to call Cleve Jones, the co-founder in 1983 of the San Francisco AIDS Foundation, and the creator of the AIDS Memorial Quilt.  I invited Cleve to come to our offices to make a no-holds-barred presentation to the members of our team.  That was one of the most productive and enlightening calls I ever made.

Cleve and I worked together with my leadership team to develope a workplace that was educated, sympathetic and nurturing for Paul and those who would follow him.  Paul passed away within a few short months.  Sadly, he was the first of many.

In 1985, my long-time goal of working in the company's Public Relations department was realized.  I was transferred in to handle Community Relations in the Arts, the Latino community, the African American community, and the AIDS community.  Through our work, millions of dollars in grants were awarded to AIDS service providers, and I became the company's regional face against AIDS.

In 1987, the brother of a man I was dating was diagnosed with pneumocystis.  He suffered and fought gallantly, but, of course, lost the battle and was gone within six months.  After facing the unrelenting grief suffered by that family, I decided to volunteer as a grief counselor during the weekend that the now gigantic AIDS Memorial Quilt was on display in San Francisco.  My boyfriend's family had completed their panel in honor of their lost loved one, and I wanted to be there in the most meaningful way I could find.

Nothing could have prepared me for the gut-punching impact the sight of that magnificent work of public art had on me.  Now that I knew first-hand what the families of these memorialized victims of AIDS had endured, the sheer number of panels on that convention center floor hit me like a brick. Woman on AIDS quilt

My job was to walk among the panels on the floor to watch for persons who are overcome with grief and unable to recover.  If they were alone on the quilt, I would walk over to them, take their hand or put an arm around their shoulders and just be there with them.  Some would start talking, telling me all about their loved one.  Others would bury their faces on my shoulder.  Others just stood there, staring at the panel on the cold concrete floor.

I have given away untold millions of corporate dollars over the years of my career in Community Relations, but that never came close to matching the feeling of relevance I took home with me from my weekend on The Quilt. 

Photo Credits

#1 - NYTimes.com

                        #2 - AP File Photo | DANNY JOHNSTON

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This really touched me. People forget the days of people screaming that aids could be caught on toilet seats and the Limbaughs of the world saying you could even catch it in swimming pools. We've come a long way, because of people like you and others. We still have no cure, but I'm glad theres people such as yourself and other organizations like the Gates foundation. Maybe one day there will be a cure. We can only pray!
One of my finest students over the course of my career has AIDs. He has done surprisingly well, thank God. This is a wonderful post, Lezlie! When I worked as Ed. Dir. at our local art museum we coordinated remembrances with two area colleges airing the Quilt film, hosting vigils, creating a panel in cooperation with area quilters. We must never forget those we have lost, those who continue to be diagnosed. Awareness matters. THanks so much for this piece. I am not surprised about the way you reacted and acted and marshalled forces to promote understanding and provide funds. You made a difference and continue to do so. ! R
Lezlie... I had the Canadian one in my store window once but it was nothing like this.

This story was amazing and I hope you get an EP on it.
rated with hugs
Scanner: I had a lump in my throat as I wrote this. That experience changed who I am.

Muse: Thank goodness the diagnosis doesn't have to mean imminent death all these years later. Back then, they would start making final arrangements!

Linda: Thanks, my friend. :-)
I'm awed by what you were able to accomplish by using your talent and contacts and reaching out at such a critical time -- both for the individuals and for everyone trying to understand what AIDS meant back them. Thank you and kudos for all you've done!
we have a colleague in the office who died very recently because of pneumonia. that was what the family told us. we know someone from the hospital (where our colleague was hospitalized) who confirmed that it was AIDS. Up until now, the family did not inform people that it was AIDS. The thing is, he had quite a few flings while he was still alive... Sadly, the family was too afraid to tell people of the real issue and inform those he had relationships with to have themselves tested...
mginmn: Thank you, but it was just a drop in the bucket. Thankfully, lots of progress has been made. Sadly, there's a long way still to go.

Hermione: That's very, very sad. You sound pretty sure that this guy had "flings" that were unprotected. That's criminal.
well Lezlie I am not really sure but who knows right? i think the family is obliged to tell his previous partners to have themselves tested just in case...
Great post!! **huge hug**

Rated. We've come a long way babeeeee, but we still have miles more to go!!!!!
Veronica: Ugh. You have a lot to deal with, don't y0u? Keep those fruits, vegetables and antioxidants on hand!
Top-shelf posting. Rated.

You know, I've never understood eighties nostalgia. I have no fond memories whatsoever of living under that pitch-black cloud of terror which was the AIDS epidemic. That terror made people stay in relationships they might have been better off leaving. It all but consigned many single people to lives of enforced celibacy, loneliness and risk. And as you and others have pointed out, the epidemic wiped out hundreds of friends, relatives and co-workers, all while the Reagan administration did next to nothing other than tell all of us to "just say no" to sex.

FWIW, and if I may have your permission, I wrote a brief article in my old blog about the AIDS quilt when part of it toured my home town:

http://thefuddler.blogspot.com/2009/05/names-lives-not-numbers.html
I had a roommate who died of AIDS some years back. What hit me hardest about the whole situation was that his family was so ashamed of him that they treated everyone close to him, including his roommates, like dirt. They showed up immediately after his death and pretty much told everyone they had to leave the house immediately because they were going to sell it so they could get on with their lives (he had owned the house and rented it out to others).
What a wonderful boss you were, Lezlie.
I worked in AIDS area then, before we knew the disease came from HIV. It is so wonderful that the disease has moved from a death sentence to a chronic disease, but still it is very tough. R
What heartbreaking, if rewarding, work Lezlie. I'm so grateful that AIDS patients (at least in many nations) have a much better prognosis now. It's terrible that we lost so many fine people, and we'll lose many more before the disease is tackled.
Lezlie...

A great piece. Thanks.

I was working in San Francisco in the restaurant supply business in those days and I, too, saw more than a few gay acquaintances and friends succumb to AIDS. It was just devastating to the community. There were so many local artists, musicians, writers, and the like whose lives were just snuffed out in what seemed like overnight that one was left stunned at the rapidity of it all.

In the 80's Randy Shilts (who himself died of AIDS) wrote the definitive book on the human tragedy of this disease, called "And the Band Played On." A must-read book, IMHO.
I think this was a good human interest story and it got me thinking about some issues. My father was a heroin addict and died of AIDS, so I care alot about this issue and have thought a great deal about it over the years.

1.The AIDS Quilt campaign is one of the best public education campaigns ever launched on the behalf of a progressive cause since the civil rights movement and anti-war movement of the 1960s/70s.

2. In many ways, AIDS was and is (to a degree) a class-issue. The vast majority of those suffering have been from disenfranchised backgrounds. Very few white aristocrats get it, but many poor and marginalized working class folks do. Even more so when you look at the Third World. Despite movies like "Philadelphia," the Tom Hanks charecter was not representative of the majority of the sufferers. This portrayal was necessary, though, so as to make middle class folks identify with a white, educated sufferer of AIDS. But that said, we still can't forget the role that economics and racism (in terms of community health education, access to resources, health care and the like) play in this disease.

3. It seems that many of the over-riding divisions that prevent working class people from addressing their collective economic issues are identical to those which prevented thos suffering from AIDS from getting the acceptance and relief they needed for purposes of political health. Race, ethnicity, poverty, drug-dependency, homosexuality and the like. All these things divide people during times when they need to stand together. They also serve as a giant wedge which makes the white middle class despise those whose interests are or very soon will be, identical to their own.

4. It is sad that in the pharmaceutical industry, money is directed toward the most profitable research, rather than the most needy research. In an emergency room, doctors help those who are in the most need. This is the essence of the "triage" system developed by the French. Sadly, though, when it comes to long term pharmaceutical and/or vaccine research, the interests of capital, rather than humanity, dictate which diseases receive the most research.

5. AIDS is the greatest public health pandamic since the Black Plague which killed roughly 35 million in Europe and an estimated 100 million or so in the Middle East and Asia. It totally impacted world culture in innumerable ways back then. Yet many in the developed world are isolated from AIDS in a way that prior generations couldn't avoid plague. This is because most of the impact is in the poor developing world. YET, despite this, we spend very little money on it, even though the majority of those suffering are young women and children, folks in the prime of life who can still do great things. On the other hand, much more money is spent trying to deal with diseases that only impact small groups of elderly (but affluent) citizens in the developing world. This is not triage, but an example of how capitalism distorts priorities in medical research.

Yes, my dad died from this. But the best way, I think, to honor his memory is by discussing these issues and how economics and class, often ignored, play a role in this disease, its spread, the disparities in treatment both within the West and the rest of the world as well.
The quilt truly is impressive and when we consider the lives lost, heartbreaking. Thanks for what you have done for those around you who have suffered from the disease.
People like you make all the difference. I had a lump in my throat reading this. Big hug, Lezlie.
I saw the quilt at one point when I still lived in the DC area. I knew some who had died but hadn't known them recently, so I never watched the process or saw what you saw. I'm not sure I can imagine that experience.

I think "And The Band Played On" was made into a movie, probably for television.

Rw's point about class is true now but I don't think it was true initially. Who got it and why shifted.

If you were in San Francisco when this first became known, you were essentially at Ground Zero. Like your early sixties trip to the South, you watched history from a very close vantage point. I don't know if you do any public speaking about this period in your life but perhaps you should; if not speaking, then writing. If nothing else, you should be going into classrooms talking about some of this stuff. You know things other people don't, particularly kids.

The only way you wouldn't have gotten an EP for this is if the editors didn't find time to read it.
Poignant thank you, friend, for this r.
Not much I can add to the thanks for posting this--"And the Band Played On" became an excellent movie as well. I have it recorded.
I was on the hospital end of things..I got out of anesthesia school in 1981, so you can imagine the degree of ignorance in the medical field. We DID know to avoid blood contact, but the degree of paranoia when an AIDS patient needed an IV started or blood drawn or needed surgery was off the scale. Since we had people on our staff with small children, or pregnant, or simply terrified, I ended up doing most of those cases. One of my best friends was diagnosed in 1991, and was actually in hospice on his death bed, so to speak, when they started him on the --at the time--very new "coctail" regiment that is now so well known. He literally rose from the dead. He posted his pictures from his Arizona trip on his Facebook page last week.
But we still need more miracles. Thank you Lezlie!!!
I lost 3/4 of my nearest and dearest friend. The wound will never heal.
Beautiful post - many blessings to you, my dear L in the Southeast. The AIDS Quilt is a magnificent work of art, which transmits an overpowering flood of tragedy, heroism, hope and beauty to anyone who sees it.
The fuddler: The 80s were tumultuous times for some of us. Many Americans, including the recently feted Ronald Reagan, chose to bury their bigoted heads and sit the whole thing out. I’m glad I wasn’t one of them.

Duane: I unofficially “counseled” so many men whose families never showed up for them, even on their death beds. I wonder how those people have lived with themselves since then.

Bonnie and Matt: Thanks for your warm responses.

Sheba and Bellwether: Thanks!

Flylooper: We in the PR office were well acquainted with Randy
Shilts. You are so right about his book.

Rw005g: Your assessment of the economics of HIV/AIDS is spot on. Back then, though, as far as anyone knew, it was gay men who got AIDS, regardless of their socio-economic status. It was only later, as knowledge built and the story unfurled, that the issues of race and class came to the forefront.

Maryway: Thank you!

Fusun: Thanks, my dear.

Kosher: Until I started writing this blog, I thought my life was pretty unremarkable. In retrospect, I seem to have been in middle of severl historically significant happenings. I love public speaking, but haven't done any in many years.

Thanks, Jon.

Satori1: Oh yes, those in medicine were having a terrible time coping with AIDS back then. I remember some doctors refusing to treat AIDS patients.

David: I am so sorry to hear that. My heart still aches for those of you who had to bury prematurely so many loved ones.

Monsieur Chariot: Thank you so much. As you can see, it is an experience I will never forget.
Beautiful, L! We brought the quilt to my college campus twice in the early 90s. Seeing it, walking among the panels, and comforting those who had lost friends and family members (I was also a counselor there) was profound and moving. Thanks for portraying it so beautifully!
Sal: My statement was absolutely true from the very beginning.

The only reason why initial attention was focused on the white gay community was because it was more middle class and had greater access to stable jobs and more disposable income than the minority community, hence it came to the attention of the medical community faster.

Even during the late 1970s, early 1980s, the disease was spreading among the black, IV drug user and hispanic community, with equal numbers of people affected, if not more. The rates were different, yes, but not absolute numbers and not in terms of the total proportion of those infected.

As early as 1982, the medical community realized they made a huge error in thinking it was a "mostly gay disease." It was not.

http://en.wikipedia.org/wiki/Origin_of_AIDS
I am deeply touched by your story and what you have done for those suffering from AIDS and their loved ones. It is an honor to share these pages with someone with your compassion and love of others.
rated
Wow.
Well told, Lezlie...
I send a hug to you for your friends lost, for my friends lost, for everyone's loss...
I had to pop on to comment, Lezlie. Excellent piece . . . and what heart you have. So many didn't/don't care enough to learn a little, to feel a little, to display a little compassion . . . this is a testament to what can be. Thank you for posting this.
It is wonderful to read about what you have accomplished in support of those who suffer from this disease. I remember the first time I saw the quilt too, and a similar feeling of being completely unprepared for my reaction. We have come a long way from those days--I have a sibling who has been living with AIDS for many years--but there is still some way to go.
Yes, it's amazing how ill-informed we all were back then (and some still are). Calling in Cleve Jones was a smart move - I immediately recognized the name from the movie "Milk" - and I'm glad it seemed to calm down the work force. You did some honorable, important work.
Good for you, Lezlie. I remember so well the fear of those years.
This has brought me tears to my eyes. Good, good for you to have cared when it really mattered.
Here's one of those friends lost to AIDS -- in all his glory

http://www.youtube.com/watch?v=DQCPGofWfto
David: Really? What a talent! I love All That Jazz. Thanks for sharing this.

L.
NOLA: Wasn’t it a surreal experience? Thank you for reading.
Healing: I feel the same about you and your stories.

JT: Thanks, my friend.

Owl: Thank YOU!

Sophieh: I am so glad the “cocktail” created in time to save your sibling.

Maynard: Thanks. Congrats on your EP today. A first, right?

Sarah: It was quite a trip.

LuminousMuse: Thank you so much.
You're welcome.

Technically Tony didn't die of AIDS. He had taken as much pain and suffering as he could possibly stand from the disease and as it was moving towards the last stage he took his own life.

Very elegantly.

Tony had been saving up pills for the occasion. Then he waitied until he was in a good mood. He went out on the town, visitng his old haunts, chatting with friends and then went home and took them all. He laid out careful instructions for the paramedics, even providing them with rubber gloves should they be chary of touching his body.

Tony was part of the original Chicago Second City troupe -- along with Alan Arkin, Severn Darden, Barbara Harris, Eugene Trobnick and Paul Sand. He was of enormous help to a young performer named Joan Rivers when she joined the company. She had tons of ideas but was at that stage still very nervous about working before an audience. He helped he put together a sketch where she played a fashion model and he her clothign deisgner putting the last touches on a fitting. From that point on it was smooth sailing for Joan. She never forgot it.
Most excellent work...then and now. I'm glad to see that HIV is not the death sentence it once was, but unfortunately this also means that people are less careful than they might be. In the DC area, the disease runs rampant. The last statistic I read was 1 in 20.
I am again late to the party but I appreciate this post. We all need a reminder that AIDS is still with us. RRRR
I've known many who died from this. Moving piece. Thank you for this and what you did.