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Remembering Lynda

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Today is World AIDS Day 2011 and I have been struggling with what to say for weeks now.  I have written and re-written this column and still felt it lacked something.  Then it hit me.  It lacked Lynda. 

Lynda was one of my very first patients with HIV in a time and place far away that remains exhaustingly close.  A time before the Internet, cell phones, and protease inhibitors.  A time when dying of AIDS was not only common, but expected.  There weren't any long-term survivors.  Grief was ever present and v toxic to the touch.


But there was also Lynda.  Lynda was a woman who did not take her situation at all seriously, but solidly accepted it.  She knew she was going to die from AIDS, but made a radical decision to live life on her terms.  She did not "see the light and change her ways."  She liked her ways.  She liked using drugs and couldn't see a point in stopping.  I had many a foolish conversation with her on this issue.  She would sit and listen to me hammering away and then stop me cold with a Santa-like twinkle in her eyes and say: "And what difference would it make?"

Indeed.  What difference did it make?  Lynda still died and the world went on.  An international AIDS day was not even on the radar screen.   I did not have to agree with positions, but she damn well knew I respected them.  She wouldn't tolerate anything less. 

She never shared a needle or straw and gave up sex as soon as could because she was bored by it.   Actually Lynda was nearly ecstatic over being able to choose not to have sex again.  She often looked at me and reminded me that sex for her was a business, and it felt good to retire young. 

Lynda saw life differently.  I still don't fully comprehend it, but that was just fine because I did not have to as long as she did.  It would take me a couple of decades and facing my own substance use demons before these words made sense. Lynda was the first person to let me know that I had to make sense to myself before anyone else.  This is something I tend forget on a daily basis. 

Lynda also taught me to forget about myself for the greater good when I could.  She reminded me that I went back to grad school many years after getting a doctorate to become a nurse practitioner to practice AIDS medicine.  I did not have any real "fire in my belly" to get a third graduate degree, but I did it because it was the only way I could think of to help.  Lynda made me remember that took balls.  "And fucking big ones too Ferri!" she often said.  Knowing Lynda pushed me back to school, find life, and be a man.

Lynda was generous, kind, and sad.  She did not hide it.  Her life was hard, but she lived it anyway and lived it loudly. 

Honestly, I cannot remember the last time thought about Lynda.  Life does indeed go on.  Yet today as cyberspace and politicians babbled about ending AIDS Lynda was the one person that kept coming to my mind.  She was a hero in time and place that literally disorientates my mind.

So today is not one of personal bravado for me.  No grand insights or sermons are coming forth.  Today is a day to remember Lynda.

Ordinary Time

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The silence I have forced on these pages has been intentional. It is the silence and patience that widowers and trauma victimize learn about far too late and far too alone. It is that odd period of social indifference that morphs into anger. It is when the world expects you to " get over it."  "It" being the most tragic loss of your life to date.  "It" being a part of your soul.  "It" being you.  But there never was just a "you" and that is the really scary part.

Since I last keyed in my thoughts the world has stopped for a brief and pathetic nod to remember intolerable things gone bad. The attacks on our country on 9/11, the made up beginning date of the AIDS crisis, and some personal loses that I no longer expect anyone else to carry with me except God. Having God to share my burdens is a blessing of faith.  

I waited for some time to pass before writing like the widower forgotten after the death and the immediate aftermath.  This the "time after time" that few like to travel to or when once there feels an anxious compulsion for escape .  When all the attention fades, the bodies are buried, and the return to normal expected. Like the day you tested positive.  It was just another day, an ordinary day.  Nothing special about it really.  Just another day in your life. Yet normal and quite times shatters life as you know it.  You pick up hat from the sofa.  You turn a door knob.  Sit in a chair... and the world you knew before you sat down is gone forever.

Yet as someone says words and information that is meant to pierce your armor the very basics of all previous knowledge and actions are suddenly wrong.  This cannot be. These things just cannot be happening.  I have given in grief,, blood, and T cells already.  Please move on. You are you after all.  You did not wake up one day and think: "now wouldn't it be grand to live a life with AIDS".  Yet there you are, and yet here I am.  

So time passes.  Like the time since I last wrote.  You lived your life.  I lived mine.  Some of it was joyous, some sad, and possibly some anguishing despair.  Yet most of it was just ordinary time.  Time that passes all to quickly.  Time that lingers all too deadly.

During these times I go to work, I laugh, I ache, I get angry, and the world doesn't spin out of control no matter how much I feel it should. I am merely a man ticking down with a viral bomb throbbing through my body.  Today I feel like a dirty bomb despite not truly knowing what one is in reality.  But it doesn't matter I live a life where I am in the dark about many things that lots of folks feel I should be  more on top of, but they do not bleed virally like we do.  They will not understand the constant supplication and prayers we offer daily, sometimes hourly.  Sometimes they become our time, ourselves and there isn't any difference between our prayers and our being except we cannot see it.  We get lost in woods of our own bodies.

We pretend swallowing pills changes things. It does not. We are forced into a world of stigmata.  For some the markings are purely physical, for others the stigmata pierces the soul, but for the majority of us we swirl in a soup that constantly needs attention.  Being alive with HIV in these glorious times of advanced therapies is a living hell that dare not be voiced for fear additional abandonment.

We have been clearly told to"sit down and shut up" and are now paraded out like old Miss Americas a once relevant icon now forgotten, and frankly an embarrassment.  We are the new wounded trophies for the social and political convenience of others.

We have no one to blame for these circumstances but ourselves and the time of viral outbreak. We took too much at the beginning, demanded more, became spoiled and tainted, and now do not have the balls to stand up and ask for pardon. We honestly though we all were going to die since we were told this.  We justifiably raged. We stammered and hollered.  We echoed silence.  However, justifiable rage last only so long before it becomes life's white noise.  

So here we are today being told the panic is over, nothing much they can't handle.  But what never seems to be clarified is who is talking about who?  But it doesn't really matter.  It is just another day.  Just some ordinary time in a life gone viral.

A Reconstituted Man

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Today I no longer feel real.  HIV has hijacked my body, my soul, and my world.  I am nothing more than a walk chemistry experiment.  My very existence is dependent on designer drugs that slap together an immune system that in nothing more than a mockery of my former biology.  I see the chinks in my armor that no one else does.  I know my existence is nothing more than clever placements of smoke and mirrors. I am but a magnificent end product of chemical wizardry.

 

The problem with a smoke and mirrors existence is that eventually the smoke thins and the mirrors dull.  The chemical magic begins to fade and your heart begins to crumble.  I am now an old man with AIDS, and it is becoming increasingly annoying.  Life's delicate balancing acts are now taking conscious work every day.

 

Frankly, living with AIDS is a bitch.  I am goddamn tired of it.  I think "fed up" is likely a better term to use.  I am fed up with taking the pills, feeling the daily pain, having my insides bloat and bluster just for the hell of it.  I am really over being so painfully tired and fatigued nearly all the time I have taken to sitting in a locked bathroom at my clinic to rest.  Now how fucking pathetic is that?  I literally have to hide in the can on a daily basis and "pull myself together" to do what I love to do more than anything in world- practice HIV medicine.

 

My words must be coming across to some as man who is whining or may be past his time.  Maybe that is true.  I do not really know or really care.  What I do know is things fall apart and a lot of people are scared of me.  Many of the people around me ignore the fact I am chemistry experiment in a sack of skin and bones.  They simply bypass the reality that I am a fabricated man. People are scared that if I crumble then what can be around the corner for them?

 

But let me get back to the "fed up" part I am feeling these days.  I think many of us living with this damn virus have these days.  We know the epidemic has lingered on too long and after 30 years not many give a damn anymore.  I don't blame them.  It was not supposed to be this way.  Yet it is.  But here is the bottom line of bullshit I can no longer stand.  Please stop ignoring the fact I have AIDS and it is a struggle. The drugs people with HIV/AIDS have to take are not "magic pills" but brutal chemotherapy.

 

And please dear God in heaven stop telling me how "good I look".  I could honestly drop kick a nun every time I hear those words.  I know I look "good".  Hell, I work hard at it, and I am not clueless that I am vain.  I also know I am consider good looking, muscled, wickedly smart, and can even be charming despite the fact that crap trickles deep from my guts when something upsets the chemical reconstitution of me.  Simply put I am fed up with my HIV and it's wrath being ignored.  Yet, I honestly don't know what I want.  I know I don't want pity, sympathy, or "tolerance". 

 

I am more than excellent lab values printed on paper, muscles under a lab coat, or expert clinician.  I am frail and fearful.  I know I am beaker of chemically induced health that if swirled too hard the precious formula my slop out of the top.

 

Living with AIDS is exhausting.  It can consume every flicker of fire in a person.  I feel it in me more and more and see it my patients' daily.  These feelings are hard to quantify, and maybe that is the problem right there.  Trying to define an emotion that rambles in the ether of life is foolish, and I am a fool for trying to do it. 

 

The magnificent writer Annie Proulx wrote: "If you can't fix it you got to stand it."

 

I know I can't fit it and I am wondering if I can stand it anymore. 

 

 

The Wall

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I can see the Wall more clearly these days and it is beginning to unnerve me.  At one time the Wall was far off in the distance and hard to see.  If I bothered to look at all I had to be drunk, melancholy, stupid, or all of the above.  I had to squint and make a grand show of it.  I was young and the Wall I was seeing was the bullshit thinking of a young man with too much responsibility. 

The Wall was real because I was a young man dealing with human conditions I had no business fooling with.  At age 20 I was the head nurse of the intensive care unit at New York University Hospital.  I was in charge of the medical ICU while my major goal in life was to drink and get laid after work while living in Manhattan.  The people laying in beds, called patients, were just distractions.  I did not see them as real.  I thought the patients simply checked into the critical care unit as hopeless medical clumps of problems and not people.  It would take me years to figure out that I was a fool in charge of a circus.  A ringmaster without a clue in the world how to control the lions or the clowns.  I had accepted a ticket to the circus without ever having been to one.

But the Wall.  It was there in my early days.  I just did not see it clearly or really give a damn about it.  Others saw the wall and told me about it, but I dismissed it.  I was young, hot, free (well, reasonably priced anyway), and ready to do anything, I was also living the life of jerk in my own mind.

Now time is different and so is the Wall.  I see it clearly.  It becomes more visible daily and it is no longer far off in the distance.  The Wall is getting closer to my hitting it every day.  At first coming to the conclusion that hitting the Wall was in my near future did not bother me.  However, as time soldiers on I find the Wall to be truly frightening.  A looming reminder this game can be over anytime. 

I am not just talking about getting older.  Older is older and that is just life.  But I am a man with AIDS, severe pain, recovering from addiction, and way too many "fill in the blank" diseases bringing me closer to the Wall.  This takes my breath away.  I was once a clinical warrior in the fight against HIV; some would even say a general in the struggle.  But has time has marched on so has my health.  I sometimes look into the future and all I can see is the Wall.  It is solid and steadfast.  I know it will not bend anymore.  Cracks in the wall are no longer for me to escape through, but they are there to crumble on impact. 

There are times when I wonder what will happen to me.  When I get full of myself I wonder what will happen to all my patients.  I know my patients will be okay, but I am not sure about me.  I am coming to an end.  This I know is real.  I can feel it.  The virus I have been treating and fighting for the last 30 years is dismantling my body and life.  Pain is no longer a tolerable companion but a fearless enemy that stabs me every minute of the day.  I am slowing down.  I am approaching the Wall steadily. 

So here I am at the end of my clinical career and I am lost.  I do not know what to do.  All I know is that I can no longer keep up the physical pace that is demanded.  I am crumping.  I don't want to fall down, but gravity does what gravity does.  I am being pulled down.

Here is what is frustrating about my issue with approaching the Wall.  No one will take me seriously.  I look good - great even.  I have muscle.  I am smart.  I push myself through.  People can and do count on me.  But my bones are raging a new song.  They are screaming that slowing down is something that HAS to happen.  It is no longer a choice.  I am a man weakening with little choices or skills.

I know many other people with HIV feel the same way.  We all stand around and try not to look at each other like strangers at cocktail party.  I shuffle my feet and wonder what will happen.  Then I glance up and see the Wall and know I will likely he hitting it soon. 

A Dent in the Wall

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I have been staring at the dent in wall for sometime now.  It is just simple dent really.  It has to be less than 1/8th of an inch deep.  Paint still covers it.  Most people wouldn't notice the dent at the foot of the stairs.  Wouldn't give it a second glance.  Today I can't take my eyes off of it.  I guess that is because the dent was made by the top of my head slamming into the wall.

 

Two years ago I crashed down that flight of stairs.  This tumble, preceded by a dog in dress and me in crew socks on slick wooden bare stairs, left me with multiple rib fractures, a bloody collapsed lung, and laceration on my head that ended my days of shaving my head for fashion. .  I had a hundred plus sutures zigzagged on my skull, and I bleed out several pints of blood that needed to be replaced.  (A sincere and humble note of gratitude to all blood donors anywhere on this planet.  Your gift of blood saved my life.  You guys are heroes.)  When the paramedics arrived I was, so I am told, not really conscious and laying in a pool of my blood.  I do remember - or at least I THINK I remember, waking up briefly saying something inane like "I'm fine really.  Just help me up so I can stir the soup." before I blacked out again.  I do remember a kind and skilled paramedic who must have known me telling to stay still, calling me first Dr. Ferri then Ric, and then sternly demanding that I stop moving.  I imagine I was trying to see if I could move my legs.  I have a very fuzzy remembrance of thinking I am not cut out to be a quadriplegic.  Well so it goes.

 

The really odd thing about death for me is the fact that I have escaped it so many times.  Sometimes I get philosophical about it and wonder "why", but mostly I just snicker and take a quick peek over my shoulder looking for the next plane to drop out of the sky on my head. These things happen you know.

 

I don't remember much after the fall.  After two years it is still a haze of blood, pain, and morphine.  Actually, one of the big issues that bothers me is that I don't know what I don't know.  This time is very loosely rattled in my mind and I can't sort out fact from fuzz.  Maybe that is a good thing.  God's way of getting us through a tough time by pulling down the shades on memory. 

 

Here is what I do know.  I take too much for granted.  I "solider on" past these events in my life and do not give them the notice they deserve.  I am a 55-year old man with the bravdo of an impulsive teen.

 

When these types of events happen and people write about them many readers anxiously await for the fallen's epiphany and insight gained from such a horror.  Honestly, I have none to offer.  This lack of insight may just be trauma fatigue.  I have been through a bizarre trajectory of events where bleeding into a lung comes across as almost playful.  In a short period of time I test HIV positive, I am at the WTC on 9/11 and barely live, all three parents die within weeks of each other and out of the blue, my drinking becomes my life, my husband of 25 years, 11 months, and 3 weeks drops dead, I drink more, I get arrested, I get sober, I meet sociopaths and embrace them as friends, I get unsober, I get sober again, my lungs keep collapsing from 9/11 inhaled grit, and I am air lifted to a big time hospital in Boston, helicopter taking me to said hospital nearly crashes in route,  and so forth. 

 

When placed in context a dog in a dress with soup on the stove that needs stirring as I lay sucking wind doesn't seem like such a big deal.  But the point is that it should be, and that is what I need to learn.  Maybe that is why I am staring at the dent in wall.

 

Dents can be fixed.  Sometimes people can't, and the best you can hope for is honoring that and moving on.  I have choices.  My life can viewed as a can of lima beans on sale because the can is dinged or as a privilege of survival.  So maybe I do have insight after all, but I don't think so.  I am much too practical.  After all, who the hell wants a dented can of lima beans? 

"It is Never Just HIV": The debate that never happened

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The current heated and polarized "debate" over the  "It's Never Just HIV"  by the New York City Department of Health and Mental Hygiene is not a debate at all.  It has become an "attack and condemn" shouting match where the winner takes all.  No prisoners are allowed and those who hold an opposing view are just plain wrong and need to be dismissed.  It has become a verbal nightmare of "If you are not with us then you are against us". 

It has also become a personal issue of shame and remorse on my part because I played a role in this mockery that is just as pathetic as anyone elses'.  I stood my ground, wrote emotionally, and offended some people I truly respect.  I was also hammered into the ground publicly and privately.  So here is my mea culpa.  I was wrong to jump into the fray swinging and I am sorry.   But, it needs to be said that I was just one of many.  All of us who attacked felt we were somehow justified.  We were not.  I was not.  There is never a real justification for this behavior we all displayed so publicly.

To make my position clear, I still support the "Its Never Just HIV" PSA.  I do not find it offensive as a gay man living with AIDS.   I find it horrifically true from my thirty years of clinical practice as an HIV specialist.  Living with HIV is never just about one virus.  Living with HIV is about your life being twisted like two cars in a head on collision.  Some of us are lucky and able to extract ourselves from the wreckage and get on with our lives; others never do.

I have not seen anyone really disputing the facts of the PSA, but rather the presentation.  Some have argued that PSA will only reach a small portion of the population.  They may have a point.  But my point is that reaching that small segment is still critical.  Lets take this opportunity to address HIV as THE forgotten worldwide health crisis that it is.   There are many more groups of people to be reached and not just the gay men depicted in this PSA.

The patients I see daily are primarily heterosexual, people of color, and female.  My patients are a tough population.  They are older, have numerous aging and HIV related health problems, live on very limited incomes from social security or disability, are "wet" (a term used to mean still actively using drugs and alcohol) and are feeding themselves from food pantries.  I don't want another new HIV patient, but I know that is a foolish dream. 

Many people who are appalled at my support of this ad wonder if I have lost my mind, others attacked my professional credibility, and still others just called me names just as I did in my replies.  I think the time for this nonsense to stop is now.  Those of us who care passionately about HIV prevention, and that includes every one screaming at each other, have got to take it down a notch.  We have all lost perspective in pursing our agendas. We have all made grand assumptions, myself included, which have morphed into what should have been a discussion into a nasty screaming match.

So here is why I support the ad as clearly and unemotionally as I can. I feel this PSA is real and honest.  Simple as that.  Others have dissected every frame of the PSA, and stated their objections for the graphics, the language, the implications of their perceived fear mongering, and even equating the anal cancer section of the PSA with somehow being an attack on gay male sexuality.

I would direct anyone who feels this PSA to be to fear promoting to view a recent PSA/short film done in South Wales on texting while driving.  (You can view this PSA at http://www.youtube.com/watch?v=K5NIE3osZEs)

I have never been so moved from a piece of health prevention education that took sterile facts and figures and dramatized them into a reality that will lance the viewer's heart and mind.  Translating dull well-known facts about health hazards into a graphic message in the age of sound bites, and satisfying the insatiable need for immediate communication is not promoting fear in my book.  It translates dry academic research into reality just as I feel the HIV PSA does. 

Again I can only speak from my view on this very emotional bridge, but I would like my view to be heard and discussed and not condemned just because it is different.  I also owe this same respect to those that see things from their view on their bridge.

Hear me clearly for one last time.  I am as guilty of the shouting and nastiness as anyone else.  I did wrong.  I suckered punched some very good people with very good intentions.  I was wrong to do so but I was not alone.

It is now our call on how to move forward.  We can continue to shout and name call or we can sit down like grown ups and move the HIV prevention agenda to where it needs to be for everyone.  It is time to work together rather than stand on our cyber divides and scream at each other.

So let's stand down, calm down, and talk.  Put away the rhetoric and name-calling and have a meaningful discussion like adults.  As I have said before it is time to listen to the great American philosopher Pogo:  "We have met the enemy and he is us."

 

The Pharmacology of Me

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There they are; all my friends.  Snug in their little coffins lying happily akimbo without rhyme or reason.  They are just there.  But not really you and I know.  They have purpose and they have plans.  Without them a dark harbinger snickers in the background.  With them the laughter is even louder at times yet I take them.  A Hobson's choice I know but a choice still the same.

The pear shaped tan one is to keep my heart from exploding.  Like that could never happen anyway?  But I take it.  My high blood pressure likely induced by some of the other inhabitants in the box needs to be treated before my ticker some ticking or my brain pops a top.  So much for being a jock.  Kind of really disappointed in this event.  After all, I take great pride in my workout ethic and body yet I still swallow a pear shaped tan one along with some good old fashion aspirin to keep my blood thin and slick from the effects of the other ones.  Oh well, nothing is perfect.

Then there are the two, did I mention two?, bi-colored capsules that seem to be needed to help regulate chemicals in my brain to keep on even keel.  I often wonder if this keel is even what the hell does the off one feel like?  Gotta take these suckers since I do not want to find out.  The keel I am on may not be steady but is the keel I got.  Everyone knows that keel you know is better than the keel you don't.

Now comes the oblong pink ones whose power is strong but short lived apparently.  I take these pink dolls twice a day.  They are just part of the family of friends of that keep simple infections from entering my body (or in medical speak "host"; I hate thinking of ME as a "host for infection".  Sure I can host a dinner party.  Host a grudge.  I suppose I can host many a thing, but why the hell do I have to a potential "host for infection"? )  Swallow the damn thing Ferri and shut up already there are others waiting their turn.

The big blue one is actually two medications slammed together working at helping with fending off the hosting duties.  Big blue ones always remind me of swallowing Smurfs.  I hate Smurfs.

Sitting next to the big blue one is another oblong pink one ready kick some HIV ass once again.  Go pink!  The remaining regulars on my hit parade are both yellowish and odd.  One is hard and chalky which has been in my body for over 15 years.  It also helps hammer down the HIV.  Taking into account a modest underestimation I have ingested 3,485,000 milligrams of this one drug alone.  The very mixed blessing of no end in sight haunts this potential "host".

The other yellow one is because I am an old man with a prostate the size of a small island ready for inhabitation.  If it gets any bigger I can expect some crazed urologist will want to send down some nukes via my penis to blow up the Isle of Dribble.  Now how sexy will that be?!

Of course there are all the others that come and go like the women who talk of Michelangelo.  The pills that allow me to take my pills.  Countless in numbers and varieties.  Treat my pain, but not too well since I know the drill.  It is the first pill that gets you high.  One pill I take. Two pills the pill take.  Then the pills take me or so it goes.  Pill to pills to bottles to needles to death.  Just suck it up.

Some days I do not feel like a man.  I feel like a chemistry experiment.  Inside me is not just blood and tissue but designer drugs to make me go.  Mark me.  Slow me down and speed me up. 

Today I am just the pharmacology of me. 

 

World AIDS Day 2010

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Labor leader Mother Jones said it best and said it simply: Pray for the dead and fight like hell for the living. 

Pray for us all.

A Member of the Choir

| 2 Comments

 

Today was a hard day.  Today I felt like a member of the choir in church.  Rather an odd saying I am sure you are thinking.  It is when left alone in isolation, but not when placed back in history.

 

I guess the year was somewhere around 1986.   Maybe I had just turned thirty or so.  I don't remember.  It doesn't matter.  I was still lingering in my "invincible" stage of young adulthood.  I was clearly indestructible.  And as clearly, I was also rather stupid.

 

AIDS was becoming more real as the days passed but I did not care.  I was young, and I did not know that I needed to care.  I was beginning my life with John that would last for nearly 26 years until his death.  Still it is inconceivable to be me that life has changed and John is dead, and yet I go on.  Hardly just on.  I have a new life and wonderful man in it, but that is another story for another day.  Today I was a member of the choir.

 

So back to 1986 and AIDS was a palpable pulse in Manhattan where we lived.  The screaming and the avalanche of deaths were mounting.   I had my first HIV test that I had to personally carry to a basement lab in the old Bellevue Hospital.  I felt like an interloper into the world of sex and disease.  Little did I know I was no interloper but full-fledged actor playing the part of the fool. I turned over the test tube of my blood to some sad looking man in a stained lab coat with a cigertte hanging out of his mouth.  My doctor has told me it was foolish to even take the test then since the only outcome was death.  I thought I would rather know than not I told him.  He just looked at me. "What the hell" was clearly spoken in his eyes.  A week later I was told I was negative.  Yea, right.  I would test again some 15 years later and get different results.  But who the hell knows when the moment of infection occurred, and who the hell cares?

 

But John and I really did not know anyone with AIDS...yet.  Or so we thought until one Sunday we were sitting in church and I kept on looking at one of the guys in the choir.  He was handsome, gaunt, waxy, and suddenly the color drained from his body.  He could no longer stand to sing and slowly lowered himself to a seated position in the choir stall.  He was gone for several services and when he came back he could never make it though an entire hymn without crumpling to his seat. 

 

The word was out: he had it; AIDS.  He stayed for a long time in my memory then simply disappeared.  I suppose some acknowledgement was offered but I don't remember.  It doesn't matter now anyway except I felt like him today in church.

 

My breath came in short little spurts, my strength gone, and my guts making a slow rumble to force me to back in my seat.  I could not stand.   Sitting wasn't an option.  It was the only position keeping me off the floor. 

 

As I sat in church and listen to the music and sung silently to perverse my sapping energy I remembered that man in choir long ago, and prayed he was looking down at me.  For today I was just another member of choir myself whose voice weak. 

 

 

 

 

 

The Pain Devil - Part 1

| 37 Comments

Writing for me is like masturbating.  It is intentionally self-indulgent, rousingly painful (if done right), self-aggrandizing, and ultimately freeing.  After the intensity and the release is the mess.  This blog is about the mess. (Part one of it anyway.)

 

The mess in question is pain.  Specifically the treatment of pain in HIV with a laser beam pointed to addicted and recovering patients.  Points of remembrance:  I have AIDS, am a recovering drunk and addict, and know pain with an intimacy that appalls most people.  With that being said here is what I have been struggling with for a few weeks. - many patients with HIV are their own worst nightmare.  It is a catastrophe that has got to stop and stop now.  It is time for the bullshit to end. 

 

The bullshit and the catastrophe are the same thing.  It is the constant scamming of pain meds.  I know HIV is painful.  I live with the pain.  I am also one of the few HIV clinicians that treats pain and treats it to the max.   I have taken serious pride in this for decades.  I will go out on a limb and swing from the neck to help someone with HIV/AIDS. 

 

But guess what?  Even I am getting fed up with it.  I am tired of people not taking responsibility for themselves, their pain, and trying to make changes in their lives.  Some days I feel like a big clown's head that people simply yell into and demand pain pills.  At the pick up window they are expecting a script for a couple HUNDRED pills.  And only short acting narcotics seem to have any value in so many patients.  Narcotic patches or time-released preparations don't do the trick...and the reason?  Frankly, no street value.  (A little truth telling here.)

 

If you have pain it is needs to be treated. However, that does not mean narcotics are the sole answer.  Other interventions actually do work.  But you have to give them a try.  You have to help yourself.

 

I want to treat people's pain, but I no longer want to be made out to be part of the problem.  Many times treating the underlying cause of the pain will greatly resolve the pain issues.  If you need back surgery have it done if it is at all realistic.  (Again, I did.)  Do some straightforward things to improve your life like losing the extra weight, eating better, stopping smoking (and don't you dare bitch about your med co-pay when you slam down $8.00 bucks a pack for cigarettes!) You simply cannot live on pain pills forever.  (Or sell what you don't use to supplement your disability.  There is that damn truth thing happening again.)

 

Take your anti-depressants and other psych meds since they will help you cope and feel better. 

 

You know what really sends me over the edge?  People telling me that are to scared even THINK about antiretroviral therapy to save their lives because of possible side effect yet are willing to swallow handfuls of pain pills without blinking an eye. Ah come on folks.

 

Also stop being pissed at me when your urine tox screen comes back positive for meth, coke, heroin, or booze and I tell you that you are cut off from getting pain meds.  Really folks, I am a human being not a prescription monkey.  I actually care about you and will not enable your addiction.  I don't want to be part of your overdose.  I am not the enemy.  Your addiction is.  I know mine was (is) and I take great joy in being free one day at a time from those demons. 

 

So what to do?  Why not fly to the devil you don't know and try some serious attempt at living sober.  Face what God gives you both good and bad.  Do the best you can.  I will stay with you. 

 

If your pain is real I will crawl over broken glass to help you.  I am a 9/11 survivor, I have been critically ill and in pain so severe I prayed for death as a blessing, I have widowed without warning.  All three of my parents died unexpectedly with months of each other.  Life can be hard.  No one gets out alive.  But life can be wonderful also even after rupturing heartbreaks.

 

It has been over four years since my husband John died and I slid into hell so deep I never thought it possible to see light again.  But I can see light.  I can laugh, and I have fallen in love again with wonderful man and plan to marry soon.  God has been very good to me.  Let God be good to you too.  Work for it.

 

The only way to stop the insanity of addiction and pain med scams is to admit it, face up to it, and stop it.  Tell on yourself.  Go to an AA meeting (yes, buddy they do work.  Don't ask me how but they do.  And deep down inside it you know they do. )

 

Don't stay away from recovery for fear of it working. Isn't the fact that AA will ruin your addiction one of the reasons you stay away?  I know it is what kept me on the other side of the doors for years.  What if the fucking thing worked I used to think.  Then what?  What would I do with my life?  I found out.  I had to live it and live it well.  It is sometimes hard and sometimes even worse but it is worth it because I am worth it....and so are you. 

 

Now stop the bullshit, tell the truth and know I will be here for you.  In the game of life it is your move.  Make it a wise one.



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