Richard's POZ Blog

Sometimes it is the quite moments that speak the loudest.  I was leaning against the door frame to patient's room in a nursing home. The thought of crossing over the threshold kept my position in check.  If I moved the little energy I had left in me would drain away.  I would somehow meld into the doorframe that had been sliced too many wheel chairs and the dead and near dead.  As I stared across into the room and saw a man, or what used to be a man, laying in a bed of sorts my mind wandered back to the door frame.  Did each notch represent someone or what I just being a tired old asshole?

I decided the asshole thing seemed the most likely.  After all, one of the great lessons you learn in medicine is that everything changes, no one is special, there are no magical escape routes, and life sometimes just really sucks.  It boils down to that very simple concept - life can and does suck.  Sometimes life can twist or play out as planned and still be horrible.  Other times the twist turns you around and you find footing on new ground.

But standing and staring at this patient was not really a "horrible" moment; it was a sadly inevitable one.  The human clump lying on the starched sheets was simply waiting for his ride home.  He was dying; there weren't any more magic pills or promises.  Now it was all dim lighting and morphine.  The only sign of life left in the room was the blinking light on the morphine pump telling me that it was slowly pushing in the pain killer.  I said a silent prayer hoping he was getting more than enough. 

I have often written that death and I are very old and well acquainted "friends".  It does not mean I like it.  I just have to accept the fact that the path I walk is sometimes strewn with bodies.  But what I have come to realize over the years of working in this constantly imploding neutron bomb we call the AIDS epidemic that death is not always the worst thing that can happen to a person.  Dying by degrees or seeing a person's soul melt is worse.

I straightened up and cursed the tiny rips in my shirt that the door embedded as I walked over to Rob.

When I first met Rob he was newly diagnosed and had tossed his well mannered life out the window for the great god known as crack.  He ditched his family, friends, career and fortune as the disease of addiction replaced his dignity with chemicals.  It also made his a pain in the ass.  No one really wanted to bother with Rob.  He was bounced from one medical practice to another.  He became known a "frequent flyer" at the local ER always seeking pain medications. 

Before he even walked though my office door the very first time I had heard more than enough stories to make me box him into the "JPN" category.  ("JPN" is the inside medical slang for "Just Plain Nuts" and that means trouble.  JPNs can range from colorful to living nightmares.  Nothing satisfies them.  They lie.  Sometimes they steal.  Often they simply break people down into tears. JPNs rarely find a stable medical relationship.  Something always happens and it is never their fault.  So they boomerang from clinician to clinician and knock people over like bowling pins. Rob was a first class JPN.)

About three years ago I had asked Rob to find another provider.  I had foolishly made a promise to myself I would not let him become just another JPN in my clinical life.  But he finally did.  I don't even recall what the breaking point was, but I do remember it was final.  A time when both the patient and provider know that it is over.  Both sides simply surrender and walk away.  It feels like leaving the scene of accident with witness that can identify you.  It feels like shit.

Yet here I was staring at him on a mattress crumpled into a ball.  He was my patient once again.  The hospice team had admitted him to a nursing home I cover.  When I saw his name on the new admit list my vision blurred and the veins in my head pounded.   As I looked at Rob I recalled our first encounter when he came back into my life. 

I was looking through some charts at the nursing stations when Rob appeared in front of me talking non-stop like the three years we had not seen other did not mean much.  I suppose it didn't to him or even to me really.  When I was an active drunk and user the only thing that was important was how I was going to get my drugs and alcohol today.  Nothing else was even on the list.  So Rob's barrage at me was more than understandable.  I had done it myself many times before I got sober.  Being in recovery really only means I am on slip away from falling down the rabbit hole again.  It is a lesson I have seen too many people forget and then never climb back out.  I was grateful for the painful reminder. This is where I heard the God voice in my head say clearly" "This is the wisdom part where you have been granted the knowledge to know the difference.  Now, don't fuck it up."

Yes God, I said to myself, I will not fuck it up...with your help.

So Rob hammered at me and I shut down.  Nothing he was saying penetrated my brain.  It hardly made sense.  It was JPN Rob doing his JPN best at the very end.  I was just about to say something to Rob when he looked at me and I could see the energy of the fight just stop dead.  He turned slowly and pulled him morphine pump behind him and said, "Just don't fuck up, okay?"

So God and Rob had come to the same mandate.  I was not to fuck up. 

As Rob slumped away the intern sitting at the nursing station just looked up at me and said, "He is going to pain in the ass, isn't he?"

"Oh, yea.  A big pain in the ass." 

"Fuck," she said to the air.

"But remember. He is also a big pain in the ass that is going to die. He has always been a big pain in the ass all of his life.  However, this is his first time dying."

The intern just stared at me.  "Give him what he needs and don't let his behavior be an excuse for you to be a bigger pain in the ass than he is."

The intern leaned back in her chair and was pissed.  "It this supposed to be one of those wonderful moments in my medical education when I hear wisdom from above or what?'

"Hell I hope not because I am still waiting for mine to happen.  I'd be really pissed if you somehow got your golden moment before I got mine."

She was not taking kindly to my banter.  I could see her eyes laser in on me.

"So I guess the gossip mill is correct about you," she said with a sense of satisfaction that only those who know their truth to be gospel.

"I sure hope so."  I smiled brightly and slipped my stethoscope into my back pocket.  "I hate it when they get it wrong."

She slammed shut the chart in her hands.  "So you're a drunk with AIDS just like that jerk.  Expect you have a fancy title and lab coat."

I leaned over the top of the desk and said. "Correction.  I am a grateful recovering drunk with AIDS and I never wear a lab coat or ask anyone to call me by anything but my first name.  You see one of the biggest problems in medicine is that we try to separate out from our patients.  We put up barriers so we can hide behind them.  It is a lot harder to treat everyone as an equal.  It upsets that imbalance you have been brainwashed with."

I just smile and head down the hall.  I don't even turn around when I hear her yell after me. 

"I suppose THIS is magical moment I am supposed to remember all my life."

I keep on walking without turning back to her.  "Nope.  But I do think you watch too much TV."

The elevator doors open and I step in and turn to select my floor.  The intern was on the other side of the doors and staring at me.  I smiled, flash her the peace symbol as the elevator doors closed.

Mrs. Flibbergibit is about to come out of the closet of my mind where she has been in residence for decades.  Mrs. Flibbergibit is one cool chick.  Nothing fazes her.  I tested positive about 15 years ago and it was Mrs. Flibbergibit who told me to "shut my pie hole and get on with it."  Of course, she never did tell me what "it" was, but that is Mrs. Flibbergibit for you.  She can go from insightful to manic as fast as you apply a Toni Home Perm. 

Mrs. Flibbergibit has all the answers.  She keeps things as they should be.  All of her T cells are lined up, neat and tidy like, and perform on command.  Mrs. Flibbergibit (her first name is known to only one person and it is not me) likes things in order.  She is a woman of grand distinction.  Nothing gets by Flibb (an affectation that even I am not permitted to use frequently). She can cook, clean, and teach neuroscience with ease, and at the same time.  Mrs. Flibbergibit is a retired Rockett who never ventures out in anything but perfect high heels and a pleated skirt.  Hair is always done right, and her lipstick is applied like Max Factor did it himself.  She makes Donna Reed look like a crack whore.

Mrs. Flibbergibit keeps my life rolling along at a brisk pace.  Nothing slows her down.  Feeling a little sick?  "Bullcrap!' says Mrs. Flibbergibit and makes me get back to work.  Sorry for myself?  "Don't make me use a hat pin on you buster!" Mrs. Flibbergibit warns.  I love Mrs. Flibbergibit.  I also hate her.

Hate!  Mrs. Flibbergibit here!  Enough of this boy's bullshit.  I was trying to let him have his say but this is just too too much for Mrs. Flibbergibit.  No one hates Mrs. Flibbergibit.  Mrs. Flibbergibit is nothing if not love personified. I think Richard needs one of those AA meetings.

Okay "hate" may be too strong of a word but I do feel she makes me nuts at times.  I don't think even Mrs. Flibbergibit, and the one person who know her first name, would even disagree with that. She reminds me of all the things I am not and will not be. She is the one that keenly needles out my shortcomings as she darns socks.  She is often annoying, but never wrong.

Well I am glad Richard got that right.  Mrs. Flibbergibit is too damn busy being perfect to ever be wrong.  Just tell me where in an angle's fart would I find that kind of time?

But I think the problem I am having with Mrs. Flibbergibit is that she is taking up too much of my time.  She is making me wipe down my pill box with rubbing alcohol every week before she even considers letting me pour my AIDS medications into their little cubby holes.  When I attempt to bypass this little endeavor she is sharp with reminding me of the people who would kill to have such problems.  At least I have AIDS pills for crap's sake.

That's right buddy and don't your forget it.  Mrs. Flibbergibit was not the one who got infected you where. You just had to go and be careless.  Fast, fast, fast.  No time for gloves or such.  Too damn much a big shot. Don't even get Mrs. Flibbergibit started on your wing-wang!   No fucking virus is going to get into you!  You are the great and powerful Dr. Richard Ferri!  Mrs. Flibbergibit's underwire bra is starting to rust from the steam pouring out of my ears.

So I sit here with Mrs. Flibbergibit and the rest of the Committee running around my mind I am tempted to tell her to fuck off.  I mean having AIDS is bad enough without Flibbergibit in mix.  I am so tempted to fight "fire with fire" when it comes to Mrs. Flibbergibit's explosions, but I am always brought up short by none other than the great one herself reminding me "remember when you are tempted to fight fire with fire firefighters use water."

Thank you, Mrs. Flibbergibit for making my T cells dance.

"...I long for the mix of the bad old days of ball gowns and torn jeans...and I sing this song for the souls who have gone...sweet angles, punks, and raging queens..."*

            Four decades have passed since the Stone Wall Riots. As I sit and try to remember the "mix of the bad old days" my mind drifts to legacy and death.  Is it possible that no one in the masses that night that finally had had enough of police and social harassment in the gay community was HIV positive?  I find that hard to believe.  We actually do not have any firm date for when the virus infected us.  We only know when some researches noticed it.  And maybe even that isn't true.  We only know when some researchers finally got their findings published in the June 2001 edition of the Centers for Disease Control and Prevention: Morbidity and Mortality Weekly Report.  That is all we know, but I suspect we feel more.

If not for Stone Wall in 1969 what would have happened to the world in 2001?  As with any insurgency the power of the people is always grossly underestimated and unknown.  Were it not for the anger of pissed off drag queens would ACT UP have been born?  If not for all the punks would "die-ins" have taken place? Who knows?  Who cares? 

            All I do know is that those of living today with AIDS only have to look back to the "mix of the bad old days" and realize all those guys in ball gowns and torn jeans set the stage for one of the greatest health care revolutions known to humankind.  The birth of the AIDS epidemic gave real life to tumbling the towers of underserved medical sainthood.   What came crashing down when we got infected changed the world forever.  Nothing was the same anymore.  Closet doors burst open and slammed shut the pious hallowed hallways of science.  We fought for our lives and we did something only done by impassioned and oppressed people - we changed the world.  Not just in AIDS care but all of health care. The Larry Kramers became the Susan Loves.  The Red Ribbons changed to every color of the rainbow to fight for cancer, mental illness, the homeless, and all the lost.

            Forty years ago today a new nation was born.  Still highly imperfect, but new nonetheless. If we did not have Stone Wall we would not have changed the world.

            I know I owe my life to all that was done when it felt so right to share the night with angles, punks and raging queens.

* From Elegies for Angels, Punks, and Raging Queens by Bill Russell and Janet Hood

 Alice Foley is dead and I am not feeling so great myself.

Alice Foley MSN, RN died recently in Provincetown.  Alice was one of the early and brave pioneers in the AIDS epidemic.  She was also a pain in the ass.  I am sure half of the people that showed up for her memorial service where there just to make sure there was a body to put in ground.  Some were just baffled.  Others truly saddened.  I had always assume that I would show just to make sure it was not a ruse, but I actually was rather taken back and sad when I heard Alice Foley had died.

I was out of town for the service and amazingly regretted it.  Alice and I did not get along.  In fact, there were times we treated each other hatefully.  A line was drawn in the sand between us and neither one of us really cared about erasing it. 

So when I read that Alice died I very surprised at my feelings since there was actually some sorrow.  In fact, truth be told - more than I could have anticipated.

Very few people would deny that Alice was "difficult", and at times, just plain old mean.  For very strange and convoluted reasons Alice and I simply did not get along.  She always thought I was somehow out to take her place.  After all, we were both well known AIDS nurses who came to up to bat before there was a name for this damn virus.  While I played the Washington DC game and helped convinced Congress that AIDS was real and going to need long term financial support Alice was creating one of the first AIDS support groups in the country.  It was a remarkable achievement.

Alice was also a wonderfully imperfect person who was one of the first people - one of the first nurses - in the world to take on the AIDS epidemic with her sleeves literally rolled up.  She got her hands dirty when most people were fearful of touching someone with AIDS.  She took a ton of bullshit from people she did not have to in the beginning of epidemic.  All she did she did mainly on her own, and that is where the rub came in.  Alice did remarkable things, but she also had an ego that danced with demons far too long and far too public.

I think I am very much like Alice Foley.  At least I hope I am.  I never thought I would write those words. 

However, reality sometimes transcends even death.  But if you think I am going to share some "touching" stories about Alice you are wrong.  Her work speaks for itself.  I am here to say that Alice, like many other pioneers, was hard to work with and was often disliked.  She annoyed people to the point of fraying their nerves into splinters of glass.  Toward the end of her career she faced a very public and brutal dismissal from the support group she helped create.  It then became "fair" sport to "Alice-bash".  I was a chief culprit of this crime and I am sorry.  As the saying goes it is not always what you say but how you say it that matters, and I most assuredly fucked up.  You see, I too am very much like Alice Foley.  I get annoyed and pissed and hurt.  I feel I have been treated "badly" by the very AIDS organization I essentially resuscitated for 10 long years at my own emotional, financial, and spiritual expense. 

But guess what?  Big fucking deal.  I am the old guard and Alice's death has wonderfully reminded me of that.  I need to find the grace and dignity to sit down, shut up, and let a new generation lead.  I have no idea how I am going to do this, but I know I must.  For a while I was pondering my "next move".  Now I am hoping to just shut up.  (Or don't get me wrong.  Shutting up on printed page will never happen.  However, shutting up like a wise parent has to happen.)

So whatever is next is next.  I am beginning to learn that again.  And after all is said and done I suppose the only thing left to say is: good night Alice, and please keep a spot open for me next to you.

It finally hit me the other day what has been bothering me for several weeks.  Nothing.  All is calm; all is bright.  I cannot fucking stand it.

I am a chaos junkie just as sure as I am a man living with AIDS and recovering drunk and addict.  I just cannot stand order and normalcy.

These feelings just go against the grain.  I need drama and turmoil in order to survive.  Why the hell are my T cells stable?  What am I gaining muscle?  Why does my partner love me?  Why am I sober and not craving a slug or a drug?  I fucking cannot stand it then I heard an 86 year old woman the other day who is new to recovery admitted she was a "chaos junkie" and that is realization was what finally drove her into AA.  As soon as the words came out of her mouth I realized she had spoken my truth.

I used to thrive on my life being a mess.  It gave me ample "reason" to use and drink after all.  If you had my problems honey you would drink too!

Well, bullshit to that, I say.  I really don't need to be in a stew all the time.  Sometimes "boring" is good.  Well, bullshit to that too I must honestly admit.  Sometimes boring is just boring and I have to deal with it.

However, after hearing this AA "newcomer" I could not get the "chaos junkie" thought out of mind and I finally realized why it was so powerful to me.  I am just like the damn virus that is infecting my body.  HIV and I are kind of made of the same crazy "DNA".  We both love to sneak in, lay in wait, than attack.  I am no better than a fucking lethal pathogen.

Or at least I used to be.  Maybe as I come up to another sober anniversary I am just beginning to learn how to live a life that is not always self-destructive.  I know I have learned to listen more to my patients and call them on their bullshit.  When I call out someone what I am really doing is calling out myself.  I typically see in them what I know is in me.

I finally am beginning to understand my own bullshit through the bullshit of others.

I use to love to live in chaos and feel the pleasure of escape by booze and drugs.  Now, I attempt to deal with life as it deals with me.  Is it easy?

Hell no.  Do I like it all the time? Again, hell no!  Am I stuck with it...yes, I am and that is okay for today.  I have come to realize after years of living with AIDS, going into recovery, surviving 911, being widowed, falling down stairs and nearly dying again this year, and all the rest of it...today is all any of us have. 

Please don't worry about me.  I am not getting sappy on you.  I am still the man that enjoys my rants and raves.  So to anyone who thinks I am getting "soft" I suggest that you simply go fuck off, and I say this from the bottom of my heart. 

It is time for this chaos junkie to be on high alert and not allow "boredom" to need some fixing in only the way a drunk and addict would fix it by screwing things up again.  So to all the chaos junkies out there I say just hang tight, and do not worry.  Life will fuck you over again some time soon and then we will all feel so much better.  I know I certainly will.

1. I love being sober; I want to drink so fucking badly.
2. AA saved my life; Fuck AA.
3. Alcohol is my constant demon; Alcohol was my best friend.
4. I hate being infected; I love being positive.
5. My T cells keep me alive; I wish my T cells would fuck off.
6. I feel my virus' rampage every second of every day; I never think about my infection.
7. I am nothing more than a bag of tainted blood; I am invincible.
8. I am a man; I can hardly claim to be a boy.
9. I am tired of being infected; I wouldn't trade it for the world.
10. I am hot and sexy; I am dirty and sick.
11. Meth attempted to kill me on daily basis; I want another slam.
12. I live my life as an open book; I wish I had more secrets.
13. I am proud of my sobriety; I am ashamed that I cannot drink socially.
14. I love AA meeting: I hate most of the people that attend the meetings.
15. I am a complex man: I am a simple fool.
16. I love very deeply; I bleed too little.
17. I want to erase my past; I love living in the wreckage of my future.
18. Being HIV positive is a gift from God for me to live with: God should have mined His own damn business.
19. My days are fading and painful; I live a wonderful life.
20. I see strength when I look in the mirror; My reflection is a fucking liar.

Can someone explain to me why I feel like shit?  Here is the deal.  I am 53 years old, work out 6 days a week and it shows, my "numbers" are excellent, I do not drink, smoke, or drug at all.  I eat well, pray, meditate, go to church every Sunday, and try not to fuck up other people's lives as general rule.  I am nearly 99.9% adherent to my HIV medications, and my only other medical problem is an enlarged prostate; yet I feel like shit some days.  I have been talking and writing about this for years.  I call these days of total and unexplained pain, exhaustion, fatigue, and other bullshit "AIDS days".  So I am tired of talking about them now and I want someone to give me an answer.  Better yet... how about a solution?

I am just staring blankly at the young gay "man-boy" sitting in my exam room.  I know my eyes have glazed over and am hoping he doesn't notice, but then I remember he is a test tube boy.  He is not going to notice unless I pour in some requested additives to him.

The story has pretty much become the same. The test tube boys are simply open caldrons with a mixture of vodka, pills, meth, sperm, and abuse brewing.  It is typically a messy recipe that really only alters in the percentage of each ingredient.  Otherwise it is pretty much the same.

Something is wrong with the test tube boy sitting in front of me.  He cannot really tell me what it is but he is damn certain some pain killers or tranquilizers will make it all better.  I look at him looking through me.  I understand that I am not even human.  I am simply a life form with a prescription pad.  All this boy is hoping for is that I am going flop out my pad and write something on it.  This is when; if I am very careful I can see a little spark of hope glimmer, in their eyes.

However, this spark fades very rapidly when I suggest that all of life's problems not answered by pills, potions, and other forms of magic.  Life sometimes takes work.

Looking pretty, slamming meth, and fucking bareback does not make a man.  It makes a chemistry set that even Mr. Wizard would not want to touch.

Sometime I do something really foolish.  I offer a plan on how they may consider changing their lives.  No one really listens.  They just shuffle out of my office and I wait for them to eventually return with an AIDS diagnosis and I am rarely "disappointed".

I am not made at the test tube boys.  I may be perplexed on how to help them but I am never mad.  After all I was a test tube boy once myself many years ago.