THE NEW CHAPTER

This will (hopefully) be my most least active page.  It will be a place for the dark thoughts.  And a perfect location for this essay I am so pleased with but didn't know what to do with as it didn't seem to fit in anywhere.  The new page came about after thinking about pre and post retirement feelings, my birthday, and my thoughts of those referenced below who never had a chance to grow any further.

I had some thoughts earlier I was going to develop and post here today but they evaporated after completing my birthday essay.  Some of it was about how we never know how we and others will grow and develop and about those who never had the chance.

April 7, 2013


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Wondering where to put my latest musing.  Remembering I wrote something awhile ago on the same or similar subject.  Thinking it should go there.  No, it's not on Daily Updates.  The New Chapter - that's where it is, why I have been avoiding looking at that page, wonder if it is one of those I was trying to delete, no I am trying to delete Old One and something else that is blank.  And here is where my new piece belongs.  A wholly new work.  And look at that, one year to the day from the "other" one.  Dark?  I may change that reference above.  I no longer think of this as "dark" thoughts, uncomfortable thoughts.  This is real.  Thanks to Barbra Streisand, Back to Brooklyn, 2013, and PBS for their broadcast.

WORLD AIDS DAY 2013

Memories,

May be beautiful and yet

What’s too painful to remember

We simply choose to forget

So it’s the laughter

We will remember

Whenever we remember

The way we were

-       Marvin Hamlisch

Death.  How people die.  An actor known for his roles as a race car driver leaves a fundraising event for a charity he founded with a professional race car driver, recklessly smashes into a tree, and both are incinerated.  What were they doing, my prurient mind wonders?  Thinking?  Someone said they died doing what they loved.  I guess.  Not sure they wanted to at that moment.

A young teenager and his father stupidly recklessly ignore the warning signs during high tide fishing or posing for pictures on a seawall are carried out to sea and rescued by an observer who dies in the process.  His wife said that’s him, always helping others.  He died doing what fulfilled him.

Four people on an early morning train returning to Manhattan, gone in a crash. A 21-year-old mentor to youth sitting in his car next to his girlfriend stopped at a light shot pointblank by a gunman who walks up to him.  

And that’s just who made the news in one day.  Some choosing to be reckless, and some who unexpectedly and suddenly meet their fate.  Infants born with maladies, surviving minutes, hours, days, months, sometimes years and more, with similar afflictions.

Writing about life and loss, a great way to relieve the tension on another World AIDS Day, 25^th formal anniversary, seemingly ignored by the world and all but 2 FB friends, of the others, one of whom if I were him I would also ignore it.

Some of us have known of and experienced the consequences of AIDS for longer than 25 years, and are fortunate to have survived.  Whether one had 5 friends or 50 or hundreds, we saw most of them die.  Horribly, quickly, slowly, one right after the other, then pauses, drip…, drip,.. another one, here, there, fewer, farther apart.  Sometimes someone we didn’t like died; sometimes someone died of something else. 

Hoping not to be mistaken as ungrateful for having lived, two issues continue to haunt me year after year.  The shared history, lost.  The lack of friends who knew you when, you were smarter, dumber, kinder, meaner, more sober, less sober, successful and not, who knew you then AND now, who understand without needing an explanation, for whom half one’s life is not a blank.

And the family who thinks they were ignored for a period, who were ignored - maybe I was wrong or insufficiently attentive or deficient, or I just had my limits, but too much for me to care for the sick and grieve the dead in one city, and celebrate life in another - who thought it was because one was too busy or self-important for them, who knew of but failed to absorb the depth of the affect of the continuing tragedy, the pandemic that went on day after day, month after month, year after year, never seeming to end, then slowly, unnoticeably for awhile, fading, becoming dimmer.  Almost but not quite forgotten, at least for many it seems.  Or hidden away in distant memories of those for whom the remembrance is understandably too difficult.  

Last year it seems my memories were shared as part of Dia de los Muertos; this year at that time I was focused on a part of the family not embittered by my prolonged physical and mental absence.

This year I remember again my pledge never to forget those for whom life was so precious, who fought so valiantly to keep it, to be careful and care for themselves and others, who lost the physical battle.  Then I realize it is not for others to honor or remember but for me to.  I remember.  Still.  I will never forget.  That is what matters, nothing or no one else. 

For the 2^nd consecutive year, I wasn’t out giving a speech or at an event.  Maybe next year I will do something.  The first year of retirement has been so good and restful and restorative.  Maybe next year I will rejoin the world, on my terms this time.  And that is surely a gift worthy of the utmost personal gratitude remembrance and recompense.

December 1, 2013

Brock S. Evans

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I have been working on this essay for some time. Now that I finished it I don't knowe where to put it. I don't even know if I dated it. But I know that for awhile in December 2012 I had it on my main page knowing I would move it. I finally moved here after deciding it does not fit on any of my pages. It is more personal than political and more introspective and covers a longer period - most of my life - than I consider for essays published under My Daily Activities. And I guess just like someone wiht HIV, I don't want not having HIV to identify me either. So off the main page and here it is for now till I find a better place or make a new page.

A 14 page version exists on my career page. I finally got down to 3 pages what I spent several pages writing in that post. I was looking at a question on a web site, no matter what it was, and it got me to tackle this again. It's been weeks of writing off and on. Got close to finishing a couple times. But there were still redundancies and just reading and editing were difficult at times. I got close recently. I knew it just needed one more effort. So finally I focused and finished it. Then I had to write this drawn out prologue, to explain again what does not need to be explained.

Then the dilemma of where to put it; it didn't seem to fit on any page. Too personal for career. Not really govt or poetry. Thought of calling it a Livemoriam, inventing a word once again to suit my need and purpose and place it under Memoriam. But who would look there? I may eventually just do that and park it there. But I wrote the damn thing, why keep hiding behind this facade of I don't care if anyone reads it. So finally finished I thought why not just put it front and center, be brave dear girl. This is the truth, of what happend to me and how I felt about it and why I will never forget.

And never forgetting, still I can move on ....

AIDS– MY STORY

How AIDS Found Me

There I was, living in Oz, AKA, San Francisco.Hot new boyfriend, rent controlled apartment, stable employment doing what I always wanted with growth potential guaranteed.Gossip, a bit of jarring news here and there, processing rumors, my ex died.He always said nothing lasts forever, and neither would he, but he was a bit of an Aquarian dramatist.My favorite pot dealer, who traveled internationally, gone.There’s something going around.Is it transmitted sexually?A government conspiracy against gay sex?Should we use condoms?Would it matter?

From a slow realization to a rapidly developing epidemic came something we now refer to as AIDS. Stigmatization and discrimination became rampant while research and treatment were sparse.People started dying, young people, beautiful people, nice people, smart people, mean people, ugly people, all races, all gay men. Coworkers, neighbors, friends, enemies. WTF?

The beautiful city of hills, Oz, paradise itself, became immersed in darkness from which hope and light could not be seen.Death seemed to be everywhere and frequent.It was said of one deceased colleague that his wit was so sharp he had a tongue sharpener in the roof of his mouth; perhaps he is the one who said it.

Many people had to make dreadful decisions now that long life no longer seemed guaranteed.Stay and watch my roommate pass or leave and participate in my brother’s wedding.I didn’t need to read that AIDS was not restricted by race or ethnicity because I saw my friends of all backgrounds affected; I learned about wasting syndrome when well meaning folks had a dinner party for my roommate and my mother’s lasagna had lost its magic and could not be eaten by the honoree, and the associated emotional impact on all; I knew that gay men of color got sicker faster as I realized my first ex succumbed to this,
then my roommate.My boyfriend and I split up and reunited so much I couldn’t take it anymore. Eventually we stopped and he moved awhile for awhile, returned with someone new, then he too was gone.

I knew about the ravages of pneumocystis when the manager who had resigned in protest

seemed to set a new record of surviving 7 hospital admissions for it before succumbing.The AIDS Coordinator I had been assisting and who was trying to blaze a trail of legal documentation left for a better position (perhaps the only gay man in that period to leave OCR alive-well actually Hal survived for awhile, long enough to have an impact).

At work, one gay man left for better employment, one resigned in protest of the Reagan Administration’s policy to consider discrimination against persons with AIDS based on fear of contagion to be acceptable and not covered by anti-discrimination laws protecting handicapped persons.The rest died.What should I do?Resign in protest?Move to Minnesota?(Someone actually did).Actually lots of people left but I could see it wasn’t about where you lived.AIDS was or would soon be everywhere.And then you’d be stuck in…Minnesota – it gets cold there, it snows!

The legal concept that discrimination based on HIV status was prohibited by the Rehabilitation Act was gaining legitimacy, in large part but not only because of the Congressional hearings, but who was left to pursue the potential cases I knew from experience were out there.

I remember the first AIDS Update Conference sponsored by the SFDPH barely a week after my roommate’s passing.I didn’t have to go but if not would anyone from OCR attend?I went expecting to be overcome by sadness but instead I found hope and light – thousands of people, well maybe it was only hundreds then but it seemed like a million to me –researchers, social workers, scientists, advocates, from all backgrounds, areas, and fields of study - all working and meeting together trying to find solutions, answers, trying to make the world a better place.I was hooked from that moment on and I never let go.That communal sharing of responsibility and resolve – and the reinforcement provided by each succeeding conference – fueled me to persevere through each obstacle or challenge that followed.

Congressional hearings were held.Administrations changed.The agency which employed me, the HEW soon HHS Office for Civil Rights determined that persons with HIV, ARC, AIDS, or regarded as such were in fact covered by the Rehabilitation Act of 1973.Eventually the Americans with Disabilities Act became law and the US Supreme Court upheld the position that persons with HIV/AIDS were to be considered covered by antidiscrimination laws that protected persons with disabilities in the Arlinedecision.But the dying continued, the treatments ineffective, the discrimination and stigma ongoing and seeming to last forever.

Outcomes may have varied during that period.More effective medications were discovered and made available, and the deaths gradually seemed to slow with each pharmaceutical advance.Stigmatization and discrimination seemed less obvious and more subtle.There seemed to me to be a period when AIDS complaints were not as common.But then they seemed to be on the rise again. Looking back one could observe the cases were no longer about dying but about living; it was no longer so much about treatment of hospital inpatients, but a wider variety of issues:access to dialysis, dentists, nursing homes, and more.

After a period of decline, HIV discrimination cases seemed to increase rapidly again and many were quite blatant.I sensed a populace that having life renewed through medication had the energy and resolve to assert and fight for their rights.Many of these complaints came from Los Angeles County, to my initial shock.

I loved working for OCR through good times and bad, success and disappointment, frustration and success. Despite my fear or concern that the length of this represents an ego run amok, on I go to discuss the future – mine and OCR’s.

And so I moved forward, my career successful.I achieved a grade level beyond that considered routine for someone with my level of education.But what made me feel successful was that I felt I made a difference, that if not for me and my efforts, complaints may not have been filed, outcomes could have been different, entities would not have known of compliance requirements.I am trying to be duly modest here.

OCR opened an office in Los Angeles and 30 years after leaving the hometown I vowed never to return to there I was.And before I knew it the LA Field Office opened language access compliance reviews at 4 hospitals in Phoenix after a non-English speaking teenager was repeatedly misdiagnosed and untreated.

I hope I am able to articulate the following thought well enough so my intention and meaning is understood.So let my start with a caveat – not having HIV will never be like having it and having HIV will never be like not having it – there is no equivalence and not having HIV one cannot know how it is no matter how much you know or how many people you know who do.So I do not and never to date have had AIDS.

But AIDS will always be with me.Always.I can never forget.I will never forget.I don’t want to forget.

And so who am I to tell this story.A gay man, left behind, still negative.And why do I tell this story?Because I can.Because I am alive.Because those who left, they are not here to talk for themselves, to tell their stories. We have to tell it for them.We have to remember.We have to live and love and dance as they would if they were here, if they could, with the fiercest passion, as they would if they knew, even more so if they knew.

One could say it may be presumptuous to speak on their behalf, moreover to purport to know what all these women and men from every corner of society, race, ethnicity, and level of poverty or wealth could possibly have in common or say if they could, but I believe I know what each would say:

Don’t get AIDS.If you do, take care of yourself.Get treatment.Love yourself and others. Nothing lasts forever. Live as long as you can.


by Brock S. Evans
December 2012