Today I feel like a bag of blood. A while ago I was sitting Logan Airport exhausted waiting for my connecting flight back to Cape Cod.  I had just returned from one of the most informative HIV conferences held each year in the United States.  My history with this conference and the sponsoring organization that runs is decades old.  Yet as I sat slumped in a plastic cold chair tired from too many late nights, far too much clinical information being poured into my head, and countless meetings with friends, colleagues and international thought leaders in AIDS care I realize I am still just considered a bag of blood.  To be more specific a bag of tainted blood.

With all the medical information somehow those of us living with HIV/AIDS still get lost in the natural excitement of scientific advances.  As research was presented from many of the international AIDS conferences about what is new in medicine, the latest advances in treatment, and the increased understanding of the pathogenesis of HIV infection the person living with HIV gets lost.  I know; I am one of those people.  I am just a bag of blood.

A bag of blood that needs to have new and difference chemicals infused into it to make sure all the bad blood is regulated and suppressed to the max.  Talk abounded about new ways to fix the numbers that haunt us living with HIV.  Somehow no matter how much time passes, how much compassion and caring is honestly displayed it always boils down to what my numbers floating around in my bag of blood are doing.

I stood in front of hundreds of dedicated clinicians and looked into their eyes widen with relief as they heard if they add this, take away that, or throw in a little of this or that this bag of blood will be just fine.  Well, guess what?  All my little numbers that everyone seems damned concerned about have been great for the last thirteen years.  My T cells are sky high, my HIV viral load are virtually non-existent.  Everything is just grand. My numbers are good so I am good.  Bullshit.  My health care providers are doing a good job with me as a bag of blood, and that sometimes is the problem.

I am no fool.  I am not only a man living with HIV/AIDS, but I am also and AIDS treating clinician, researcher, advocate, and writer.  I understand that I am guilty as hell as viewing my patients as bags of blood also.  I am not immune to stupidity.  In fact I seem to have a natural affinity for being attracted to stupid ideas.  I even voted Republican once (okay I was drunk and thought I was in a self-serve car wash.)

But here is what I want to say as just one of the millions of bags of blood in the world.  Sometimes things go wrong no matter how well controlled all those little numbers, parameters, and thingamajigs are.  Numbers aren’t everything.  Sometimes they aren’t anything.

I have had to defend my right for feeling like shit even when all my numbers indicate that I should be just fine.  I once stood in an exam room of a big time teaching hospital that has millions of dollars of AIDS research money with blood work better than most HIV negative people yet I was sick as hell.  I had painful lesions on my mouth with excruciating joint pain and a fever of 103.  I was beginning to fade into a deep dark space that only the desperately ill fall into.  It is a hard and frightening because you realize that you are sick, very sick, and you no longer really give a shit.  You just want to fade away.  Death does not seem so horrible and even has moments of enchanting welcoming.  Everyone just stood there looking at me and looking at my numbers shaking their heads and mumbling about how great I should be doing as I sank deeper and deeper into that invisible illness rabbit hole.

I can still hear the muffled chant:  But your numbers are great!
Screw my numbers.  Stop looking at me as you personal chemistry set.  You are not Mr. Wizard.  I am not the little kid from next door in awe of Mr. Wizard’s genius.  I am not a bag of blood.  I am a man with AIDS whose numbers sometimes lie.  HIV lies.  HIV wants the people it infects dead.  That is its mission.

So the next time I am standing there with my excellent numbers, my nicely workouted body, my good social graces and I tell you I am in trouble.  Believe me.  It is ME talking.  I know there is something wrong.  I am not a bag of blood so stop treating like me like one.

 

 

 

I am sitting here waiting for the sun to go down so I can go to bed without embarrassing myself too much.  The last few days have been “AIDS Days” from hell and all I want to do medicate myself and go to bed.  I am exhausted.  Nothing is physically wrong with me I am told time and time again.  All my numbers are great.  I am packing on muscle with a new work plan and diet that even amazes me.  I look terrific.  I feel like shit.

I began writing about “AIDS Days” over five years ago in HIV Plus magazine.  I thought it was a simple article about how some days, no matter how I looked on exam or in person, I still felt awful.  I can develop chronic joint pain, mood swings, and fatigue that cannot be described.  The fatigue is unrelenting and NOTHING helps it except the tincture of time and understanding.  There are the days it is sometimes a very real struggle to simply shower and get dressed.  These simple acts knock the shit of me and are now happening with more regularity than I like.

The response to my article in HIV Plus was shocking and amazing.  The editor published to letters sent to him thanking me for finally articulating what the readers could not their loved ones.  With the exception of one other article in all my years of AIDS writing have I ever been so overwhelmed from the hundreds of people that wrote me via my website about their similar experiences.  No one gets it they told me then, and I am here to tell you no one gets it now.

Why do we still have this happening?  Simple, the medical side of HIV care is now myopic, profit driven to insulting extremes, and most of the AIDS leadership in our country are complacent and foolish people. Some are worse: they are arrogant and stupid.

 AIDS the business has over taken AIDS the virus.  You know what is going to kill AIDS?  Most likely the very people at the head of many of the local and national organizations that should claim they are AIDS champions.  Well bullshit to them and that.  There are only a few real leaders left, and they are getting old and tired.  They have had it.  I don’t blame them.  I know I have had it and most days want to simply say “fuck it.”

We are riding the wave of compliancy and laziness of people living with AIDS to harm ourselves.  Many of us who are simply HIV positive are taking our pills, checks, and other “entitlements” and keeping our mouths shut.  We have become what the gratefully dead Jesse Helms wanted us to be come – silent and invisible.  The now dead senator must be laughing out his grave side ass because he got what he wanted and died knowing it. 

So I suggest the first thing we do is get angry again.  How come the International AIDS Conference in Mexico that ended just days ago barely broke mention in the mainstream press? (Well, actually in fairness to the press one of the reasons was that it was stupid, long, and boring.  Nothing new was said.  No one rocked any major boat and everyone left to go home back to their same old stuff.  No, I am not ignoring the stupid Swiss statement because it was science that any high school junior could have put together. I also believe they would have had more balls about backing up their findings instead to that embarrassing back peddling done.  Science is suppose be science not some made up conjuncture to put a band-aid on situation.)
How come the age old travel ban that prohibits HIV positive people from entering our country still exists?  Yes, I know it is most likely going to finally disappear with none other than the master jerk of all Presidents with George W. going down in history as an AIDS champion for finally signing a executive order that never should have lasted for more than year.  Yup, the same guy who took America to her knees in the standing of the international community, invaded countries for their oil and religious beliefs, and sent then of thousands of men, women, and children to slaughter will be in the history books as the President with the balls to lift the ban.  If that does not make your HIV positive stomach turn nothing will.

I could list many more “How comes?” but what is the point.  We have become the very people Senator Helms wanted us to be so I guess we should all just keep our mouths shut and the old bastard rest in peace.  I know he certainly would appreciate it.

 

 

The memory of where and what I was two years ago tonight is a fabricated recollection of being released from the Provincetown Jail after being arrested for drunk driving.  Actually I wasn’t all that drunk, but I sure as hell was high.  (Okay, I was fucking drunk out of my mind too.) I was fucked out of my head on the gram of crystal meth I had shot into my leg vein over the previous 24 hours.  I was a smart addict.  I was an educated addicted.  Cops don’t check really want to check out a drunk guy in covered in his own piss stained jeans and search for anything.  I knew that so before I started to slam the meth I simply started an intravenous line in a in an inner left groin vein just like I had done a million times before for patients.  I was not only a smart junkie but an educated one.  Dr.  Ferri always had the ability to hit vein on patients no one else could even think of finding.  Who knew it would be such “gift” later on in my life.  So I stumbled home from the police station without any shoes or shirt I knew my venous access line was still intact and most likely still useable for another slam.  But I did something I never did before.  I walked (okay staggered) down a side street between Bradford and Commercial and without even looking around stuck my hand down my jeans and yanked it out.  I found some old newspaper and crumpled it up into a bloody ball and pitched it deep into Cape Cod Bay.  That is all about I really remember expect somehow getting home covered in my own piss, blood and fluids and still fucked up on meth and vodka.  I also remembered that I had buried my husband of 26 years just five days before this mess of a rabbit hole that I feel down.