JUNE 8, 2009 8:26AM

HIV Taught Me To Ignore The Virus "Intolerance"

Rate: 56 Flag

Some turmoil is nesting within the calmness of the Open Salon community. Do you sense it? Do you read it? Do you avoid it? What’s this disruptive commotion that I write of? It’s insensitivity, a virus that’s invading the decency of all who aspire, inspire, and write within broadband’s universe. Why does the ignorance of a small few cause such a disruption to what is good?

images-25We bloggers are a unique breed; we expose our feelings through a veil of anonymity in the hopes that some one will read and connect to those thoughts—emotions framed within essays, short fiction, opinions and visual media: photographs and video. Agreement sometimes takes a backseat to discourse; civility, again for a small few of those who either blog or are just readers, sometimes surrenders to rudeness. But common decency should never concede to vulgarity, threats, or behavior that chases away a resident of the Open Salon community. How sad…

Life experience is a wise teacher. Memory is its textbook. So I will read from mine in hopes that I don’t pontificate—just educate.

Her name was Sandra. She was a genetic mixture of African-American, White, and Native American. She was a single mom who supported her two children by stripping, hooking, and selling drugs—when she wasn’t images-15herself using. But Sandra came into my life not as a mother, stripper, hooker or drug addict; she came as the first diagnosed HIV patient to be admitted to Cedarcrest Hospital—the psychiatric hospital where I worked. She was in her mid-twenties; the year was 1987.

Panic doesn’t describe the chaos that became Sandra. Before her committal, in-services were held, seminars attended, fears expressed to union reps and undeniable prejudice permeated planned treatment. In 1987, Sandra had AIDS, not HIV, and her ability to contaminate and spread death through casual contact was the paramount concern. Sandra belonged in a hospital that dealt with contagious diseases, not a images-4psychiatric facility still haunted by the specter of tuberculosis. We healthcare professionals were irrational in our fears. Shaking Sandra’s hand, touching her skin via restraint, breathing her words, having her sweat touch us, a needle prick us, that’s all it took to invoke the demon of contamination. The spread of her AIDS (still HIV) turned us into HAZMAT workers; pioneers in dealing with confusion. Blood, spit, open wounds and unprotected contact were things to fear.

Medical gloves became the norm—some workers resorted to wearing industrial gloves one would use if touching corrosive material. Gowning-up meant protecting your clothing with a paper costume that would keep AIDS from contaminating your loved ones once your shift ended and you went home. My God, we were stupid, for fear was our leader—ignorance our ethics.

images-9One must be aware that three years before Sandra’s arrival, hepatitis B reared its ugly head in the healthcare community. Three painful inoculations were required to stave of being infected by those who would bite, spit or throw other body fluids at us. Sandra, though not combative, could eventually become so—all available literature suggested a quick decline, emotionally and cognitively. Sandra was a walking time bomb.

One evening, I was assigned to watch Sandra, not talk to her, not counsel her, but watch to make sure she didn’t mingle with the other patients. Our unit was co-ed; Sandra was attractive and flirtatious. Her AIDS diagnosis was confidential. Sex happens within the confines of a locked unit.

Sandra’s treatment plan consisted of one thing—preparing her for discharge. She wasn’t psychotic, she understood her preconceived death sentence and wanted closure for her children. That if anything caused her anxiety. If she was suffering from heroin and cocaine withdrawal, she didn’t show it, either through chaotic vital signs or sickness. She just sat across the room from me eating a Milk Way Bar, silent but observant to other patient activity. She smiled at me; I nodded and moved closer asking imagesif she needed anything. She smiled again, said “no,” and broke off a piece of her Milky Way Bar—her bite mark visible on the end of her offering. Without thinking, I took it, chewed and swallowed it. She laughed. Then I realized I broke with protocol; my sweet tooth ignored irrational fear and prejudice—for that’s what we healthcare providers were: phobic idiots intent on prejudging and inflicting our ignorance onto Sandra. We became the disease. We became intolerance.

I’d like to say Sandra’s story has a happy conclusion, but it doesn’t. Numerous admissions and discharges followed. Her children were taken from her and placed in foster care. She was raped and molested—sexually by a degenerate coworker, spiritually by a healthcare system that deemed images-5her sub-human. The last time I spoke with her was in 1999, three months before my retirement. Her HIV had transitioned to AIDS; her frailty was exasperated by onset dementia—she was dying.  Her last words to me were, “thank you.”  I don’t know if she was lucid, but I like to think she was thanking me for eating a piece of her candy bar. How I love to think that.

Sandra taught me much about myself. My coworkers who aided in her treatment also learned from her. During the 1990’s, many HIV patients were admitted to Cedarcrest; tolerance and understanding became part of their treatment. Two coworkers died from that hideous disease. Why…?

Yes, tolerance can be learned. Kindness can be applied. The virus I call “insensitivity” can be controlled, if not eliminated. Continue posting and reading the brilliant writing that Open Salon offers you. Learn from it—enjoy it. Let it become a piece of your life… perhaps a taste of a bitten Milky Way Bar. Sandra would approve.

 

 

 

 

How can people be so heartless
How  can people be so cruel
Easy to be hard
Easy to be cold... 

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with the best of intentions I dedicate this to Monte.
Any piece of any candy bar you offer Mr. Mustard, I will glad take. Even if I don't eat sweets. Your generosity and kind soul are a beacon to us all. With love and respect for Monte, too.
Your good intentions shine through...
Amen, Mr. M. You are one of the wisest of the many lovely and talented people here. We sometimes need a reminder to cool off. And Monte, another great OSer, look forward to your next post. We are better from your presence, too.
My hopes are that Monte will enjoy his time off and come back refreshed and renewed. As our resident pastor and Theologian I know it's hard on him to be opposed so vehemently (my words, not his) by so many. Monte's posts come from such a good place and are never preachy. My goodness, he even always puts a disclaimer on his pieces that says so.

I loved your story as well Chuck. The world needs more tolerance and I need to practice what I preach as well. Some people can't be changed. I know it would be hard for someone to try and changed me, so I'm letting bygones be bygones. I will focus more on those I love on here and care about and putting out whatever drivel comes to my mind.

Rated for a man whom I respect a lot (you), and a man I miss a lot and respect (Monte). And for a wonderfully thoughtful piece.
Enlightened.....Bravo, Mr. Mustard, Bravo.....
well said mustard.. well said
I could not possibly say it better than KoB sama, my good friend just said, so I won't even try, His words echo my thoughts.

May peace and forgiveness envelope us all.

STRONGLY rated in hopes to see monte soon, and to never again be so embroiled as I recently was.
Glad you wrote this, Mr. M. For Monte and for all of us. I'll be thinking about this today. Perfect choice of a song as well.
Well done friend Chuck. A moving and educational experience all at the same time.

Rated
'My God, we were stupid, for fear was our leader—ignorance our ethics'.

The fragility of humanity, fear and hunger lead the herd.

Thank you for the read.
I was not aware that Monte was taking a break and this would be a huge loss to OS. How anyone could oppose Monte in any way that would be considered harsh, rude, unkind is hard for me to imagine. Monte is one fine rare human being, as it seems so are you Mr. Mustard. I joined OS in the beginning of August and I'm hoping the turmoil of late (unrelated to Monte or his posts) is short lived. These times seem to come in waves. My policy has been to stay away from anything that doesn't involve mutual openness and curiosity. There is power in space and letting go of our end of the rope can be ironically productive. I am sorry about the loss of beautiful Sandra. Thank you for this post. (Love the song)
I've missed the entire backstory. No matter. A lovely post, and may Monte return soon.
To all who have commented: most of you got Monte's private message. He said he'd be reading... I hope he is. I hope the small few I wrote of are too. As for my patient Sandra, her healing is now eternal.
Thank you all.
What a wonderful post for Monte, I hope he checks back for this. Your story reminds me of my college days spent volunteering in a homeless shelter for chronic inebriate homless in MPLS. I exchanged earings with a resident upon his request, basically the same rationalle that you provided. Foote, the elderly gentleman, just beamed and I will always remember that moment. Of course I had second thoughts as soon as I clasped the back on the earing thinking, "I should have washed it first at least!" but his teary smile spoke volumes... still does. thanks for this.
Thanks, Mr. Mustard - I think you succeeded in your intentions with this piece, powerfully and gently, as is your custom. Blessings, Mustard.
Mr. Mustard, thank you for this beautifully written post and for your sensitivity to others.
Jesus walked among the lepers without fear. That was to be our example. Thanks for living by it and for reminding us to do the same.

I don't understand why so often those who confess to be the most religious are the most frightened to die.
Thank you for this Mr. Mustard. I'm about to go out of town for a week, and will be deprived of computer access for several of those days. So I won't be able to convey my thoughts to Monte - and was having trouble gathering those as it was.

I had not experienced the discord and ugliness he spoke of - perhaps I'm one of the "avoiders" you spoke of. I enjoyed his posts and always left comments telling him so. I also appreciated the supportive comments he left for others. I wondered if he felt a lack of balance in the kinds of stories and opinions that received attention? Sometimes - not always - the quiet, gracious, gentle posts get ignored for the salacious. Kind of like life.

I will miss Monte and hope he returns. As our theologian and man of God, he might never know the import of his words - even if the ratings don't reflect it. Every person who stands for grace and compassion makes the world a little lighter, and Monte is one of those gentle lights.
I too hope Monte will see this, but if not, he may rest assured there are many who feel the same way as he does.

Your loving example of Sandra woven into a tale of reason and tolerance is well intentioned and appreciated. You are a good friend, and a larger than life presence full of gentle, beautiful words of wisdom.

Rated
A candy bar...a simple gesture of connection accepted and received. Healthcare facilities are often microcosms of society- at- large, sadly intolerant and reactionary. It's the rare one of reason, true ethics and compassion that lights the way. You, MM, are that beacon. I'm dedicating my next Milky Way to all the Sandras...but mostly to YOU and other kindred-spirit health professionals.
--RATED-- multiple thumbs, if possible
Lately I've been marshalling whatever writerly strengths I have to make people feel at home when they visit my page.

And the reason for that is exactly what Mr. M names here directly--intolerance.

It is here. And it's rampant. The sense of "for us or agin us."; like a snake running through the sewer, is very real. And Mr M calls it out beautifully here. He did it so well that he even made me LIKE a "Three Dog Night" lyric---something I didn't think possible.

The challenge is that intolerance sells. It's big business. It's the fodder for what fuels most news. Few care about Patti Blago's normal sister. ALL OF US pay attention to people who eat tartantulas. Take that up a notch and the fact that their might be nuances of opinion to the writing on torture, religion, or what it means for men, women and countries to play nice with each other is often not tolerated on these pages. One learns to shut up or get slapped down hard.

And this has NOTHING to do with editors. Even when the tone of OS or salon gets as shrill as it sometimes does. Editors are there to run a business. To attract readers. I forget that sometimes. Like last week I wrote something called "Die Yuppie Scum" just so Mommy and Daddy Editor would pat me on the head and say "Good boy Roger. Here's your candy!" And it didn't work. So I looked at the piece the next day and changed the title, the picture and edited it myself. And it was one of the most thought provoking pieces I had ever written. Without a whiff of intolerance. Course I still wanted the candy.

But I wanted the good writing more. Even if it's only seen by a small, select few.

Nothing wrong with good, spirited debate. But when the intolerance creeps in, perhaps we can all follow Mr M's lead and call it out.
That's what kills it. Calling it out.

Watch Joan Walsh do it on TV. It is possible.

And maybe if we decided to make people feel welcome when they came by for a visit. . . .

Maybe it's possible to do that and run a business too?

Isn't it?
I've been out of the daily fray due to workload and wasn't aware that Monte was taking a break. I've been on here long enough to know that intolerance ebbs and flows. My policy is to not engage the ugliness. Eventually, the light overcomes.

Thank you for always being a kind and considerate source of light. I'd share a candy bar with you any time.
I love Monte.

Great post MM :)
You better be careful...... we are going to come to expect this kind of writing every week. You have such a way with words!
Monte is one of the kindest souls here on OS; whenever I read a blog where he comments, I read his words with attention, because on more than one occasion I have felt that he was also speaking to me... that´s the immense nature of his kindness...
And, dear Chuck, the story you have chosen, and the words used to tell it are a precious: "Yes, tolerance can be learned. Kindness can be applied. The virus I call “insensitivity” can be controlled, if not eliminated. " Fantastic, I believe the same.
Kisses,
Marcela
Thanks for this post, and reminding us that it's the simple gestures - those moments we put our self interest and prejudices aside - that makes all the difference.
Lots of wonderful people here, Mr. M.

Here are the things I think about when dealing with angry or caustic people:

1. They have a right to an opinion and to express it here.
2. Rude and angry people often don't understand that it doesn't help them to rant and rave.
3. It is my choice to become upset over it, and I can choose otherwise at any time.
4. If people are trolling around spoiling for a fight, it is rewarding to give them one. If I want them to stop, I ignore them.
5. It may be possible to bring the argument back to the issues at hand by offering kindness and respect.
6. People who are mentally ill--and there are a lot of us--have less control over their responses than many others.
7. If I'm upset about something I read, I can leave the situation by navigating elsewhere.
Thank you for these wise words.
wow. i can't really think of anything to add save for to echo delia; thanks for this mr. mustard.
Chuck -- This was a touching story. Not all of these ends happily. You obviously did much good in your life. While you may not have been able to do all you want with your clients to help them. Sharing that candy bar was an important event in Sandra's life.

Your compassion for people always shines through, and I value knowing you. rated.
I don't know the backstory here, but this is a beautifully written dedication.
What a compassionate and heart rending story! You are highly commended for your generous kindness. Mean people suck.
"My God, we were stupid, for fear was our leader—ignorance our ethics."

Fear can be a very strong motivator. Ignorance can only be disposed of through education. We have learned much since the beginning. May we stay open to all the lessons on this journey.
You and Monte are two of my favorite people on OS. We need you both here.

denese
People go to extremes when facing an unknown danger. A very close friend of mine lost his wife to AIDs. A blood transfusion before the source of transmission had been discovered. She was heroic in the way she kept on living until there was no way to keep on. We never shunned her, she was the one who feared more than anything else that she might pass it to her child, her husband, her family, and friends. Intolereance is the fruit that is bourne when fear and ignorance breed. We would be better off without it.
I love Milky Ways and I also love your writing.

RATED
Again to everyone. This came to me in a PM from Monte.

"Thank you, Chuck. I appreciate it more than I can describe. You have become a good friend in a short time and I always marvel at the goodness that is in this world that shows up when you wonder whether there is much of that left. Your post shows me, once again, that goodness and tolerance can prevail.

God gave us that capacity which is the only way we will ever begin to overcome evil: it must be absorbed into love and goodness -- for fighting it only creates evil for evil.

I will be back after this break, after I get myself to a better equilibrium and am able once again to not let all of the intolerance and stupidity get to me."

Now I'm craving a Milky Way Bar!
I am among those who don't know the back story, but I love this post, the wisdom and beauty of your words, the story of Sandra (like so many others, she was lucky to have you touch her life), the lessons you teach. Thank you.
another excellent and wise post. love love love and rated. and love love love to monte too.
thanks for bearing witness, Mr M, this is a beautiful and sad story
and huge thanks, mm, for putting mental illness in your tags. there is so much intolerance of people with mental challenges. it's heart breaking. i have friends who get arrested a lot and others who are just shunned and more. love lvoe love again.
Sometime the simplest of gestures says more than a thousand words said...

:)
This is a fricking outstanding and important post!! I remember the early days of HIV/AIDS as well....and all the irrational fear that came with it. And you are right...tolerance can be learned. It may take awhile, and maybe longer than we would like, but it can be done.

Thanks for the lesson.
I don't know what happened to Monte - but personal experience has taught me from an early and tender age that cruelty is a sad and unfortunate fact of life. There are always sad, angry bitter people (both children and adults) ready to make others share and pay for their emotional burdens.

After some time in the school of cruelty that is the world, I finally learned to dismiss the cruelty of those that are of no importance to me personally - and to forgive the cruelty of those that were supposed to be close. The latter is of course the hardest.

Breaks are usually good. Sometimes it is best to shrug and walk away for a bit.
Incredible and very insightful post. I think tolerance and patience is something all of us need to practice, including myself for one.smiles..
Love and kindness goes so much further than anything else, one will always remember them more in the days to come.
Thank you for a such and wonderful post. I would eat any piece of candy bar you offered. You are such a loveling, thoughtful and caring person. It speaks loud and clear in your posts and in your comments.
I hope Monte enjoys his time away, rest and gets lots of relaxation. Then comes back with a refreshed outlook and knocks our socks off with one of his wonderful and amazing posts.
Thank you
I do not operate in OS with total anonymity but I do not choose to write very much about my own emotions and generally speaking I try to keep my immediate living family out of what I write. I am aware that family and friends in far-flung foreign fields of the real world are reading and noting.

Those who do choose to write more personally deserve to be respected. Everyone deserves to be treated with respect.

I received Monte’s PM and was saddened to read it because I was only just getting to know him. Much of what he said about the fluffing and fighting resonated with me. OS was presented as a place for creative artists and it has become something of a nightmare of triviality and meaningless bile. There are many good people here, you among them, Mr Mustard, but there is one less if Monte has gone away.

As we are constantly being told, “’Open Salon’ means ‘open’.”

As Chicago Guy says: “The challenge is that intolerance sells. It's big business. It's the fodder for what fuels most news.”


As you say: “But common decency should never concede to vulgarity, threats, or behavior that chases away a resident of the Open Salon community. How sad…”

Sometimes the only recourse is to walk away.

Cherie (another of the very decent people around here) says: “ I finally learned to dismiss the cruelty of those that are of no importance to me personally.” However, it isn’t easy to avoid being drawn in. Despite my best intentions I have sometimes joined in pointless feuds.

I have in some of my posts tried to bring some perspective (that in itself has got me into fights I didn’t want!). For example, deleting comments on OS is not censorship as it appears in the real world such as Sri Lanka where fractious editors get shot in the head.

Your very moving anecdote also brings perspective by reminding us of the real world beyond the playground of OS.

I wish I could commend you more than merely rating you once!
Thank you Mr. Mustard, for sharing this beautifully written story. You show us all that generosity of spirit does still exist and remind us to find our better selves.
Having been offline much of the last few weeks I seem to have missed a few episodes of Peyton Place... but the sentiment is clear and the message heeded.

Thank you :)
Late again to yet another excellent post.
What?!?! People were uncool towards Monte? I missed all of this because I am not Christian and Monte was always careful to alert folks who did not share his beliefs that his posts were from a Christian perspective. I appreciated his understanding of differing views so much. I felt respected by Monte.

Damn.
Your own courteous comments are a model for how we can make each other feel welcome.
The song you chose is perfect. Often, I have listened to the lyrics and thought about certain people's lack of human compassion and neglect. Sadly, I had loved ones who died of infectious diseases and witnessed the lack of tolerance and acceptance among our family and friends. In addition, I observed medical personnel refrain from assisting them on many dire occasions. Thankfully, people have become more educated.
Mr Mustard, thank you. My tears are flowing unabated now and I cannot properly respond to this magnificent post. I just want to say that from 1986 to 1991 I attended dozens, if not hundreds of funerals, and your post brought back a flood of memories that I have tried to reconcile. Obviously I haven't reconciled them yet.
A little kindness goes a long way. Lovely post Mr. Mustard!
I have no idea what happened here. But I've read OS since it started (but didn't feel justified in commenting until I threw my hat in the ring), and Monte's posts always reminded me of Rabbi Gelman's Newsweek articles. He was never any less than respectful and thought-provoking, even though subject matter was approached from a religious perspective. I hope he returns. And I wish I knew who was responsible. I can verbally eviscerate like nobody's business.
...and I realize that sharing my thoughts with the person responsible is the antithesis of your post's intent. Just thought I'd let you know I got it. Got mad, but got it. And a phenomenally-written post, as is your usual offering.
Sometimes the smallest gestures are the most important. Wonderful post. Thanks.
Late, discovered this thru Reddit...touching tale and timely reminder of what humanity ought to remember to do at all times. thank you.