I was sitting in the pew of my church last Sunday when our wonderful priest – the Reverend Terry Pannell – said: “God is NOT fair; He is gracious.”  My breath was knocked out of me.  I just heard these words from a priest I very much love and admire spoken from pulpit my church.  God is not fair; He is gracious. It was one of those moments of epiphany that happen so rarely in life.  I cannot think of a person in the world who ever truly believed that God was always fair in His bidding.  The world is just filled with horrendous examples.  Each of us have our own stories that are personally tragic. 

But what the hell did this mean?  Not fair but gracious.  I am still peeling away the onion of those words, but God gives to everyone in their and His own time.  God’s timing may not always seem “fair” – but fair is a human construct.  A tit-for-tat way of living life.  Life simply does not work out that way.  However, God gives to all – He is gracious.  I am trying to learn about His graciousness.  It is not easy.  Mainly it is just plain fucking hard.  I often whine and complain…Why do I have AIDS?  What am I an alcoholic?  Why am I in constant physical pain?  Why did my three parents drop dead within weeks of each other without any real warning?  Why was I at the World Trade Center on September 11th?   Why? Why? WHY?

I have to try to learn to stop with the “whys” of life and appreciate the graciousness.  For all the physical bullshit I am actually a rather healthy man with muscular body.  I cope with the pain and it does not make a big impact on my daily life most of the time.  I miss my parents and yet their sudden deaths came at a time when they suddenly and dramatically failed in their own health.  I am also blessed with my partner Jim who brings a new kind of joy and happiness to me that I never imagined possible when I was made a widower over night.  My writing sells well.  My last novel was a best-seller.  I have a group of friends that are family to me.  I love them and they love me. 

I need to find the gratitude God give me in His graciousness.  As a recovering alcoholic my sponsor has frequently said to me when I grippe of the unfairness of the world these simple words: “Make a gratitude list.  A grateful heart cannot be hateful.”  She is right.  I just need to listen and DO more of what she says, and stop pandering to her to shut her up.

I need work.  I need to remember that every day of my life. 

Terry closed his beautiful sermon by saying, “God does not give people what they deserve.  He gives them a lot more.”  Terry is right.  I need to be thankful for this graciousness.  God has given me a lot.

When everything is said and done sometimes the only thing left to do is dance.  What the hell is he talking about now?  Honestly, I do not know.  I am in a personal limbo with my soul fully exposed and raw.  Should I cry?  Runaway? Scream? Fight? Or just simply give up?  Again, I don’t know.  All I do know is that sometimes love can hurt like a bullet in the heart.  Sometimes these cardiac bullets are self-inflicted.  Other times there seems to be an endless line of people that have taken their shot at you.  Tonight is one of those nights.  At the AA meeting I went to a few hours ago a man said that his sponsor told him that the first time he cried in an AA meeting was simply “the ice melting away from heart.”  Hearing these words took my breath away.  Maybe that is all this is –  tonight’s tears are from the melting ice around my heart.  I still don’t know what it means, but I do know I can feel a thaw. 

So who ever is “doing my act” please fucking stop it now!  I am having a hard enough time remembering my lines and when to stand stage right or left.    Stop messing with my “act” so I pull it together for myself, okay?  I am just too old to go “on the road again”, and I happen to love where I am.  Go figure.

I have been talking with some new and old “cyber” friends all of who are HIV positive nurses or physicians a lot more lately.  Some of my friends have just learned that they are positive; others I have known for years.  I am not sure why the sudden surge in our communication but I do know it has greatly helped me at a time of wondering about my own HIV health and the world in general.  (I suppose this very scary upcoming presidential election has that effect on me.)

But one guy has been asking me some very specific questions about what I learned when I tested positive that I did not know before my status changed.  The very question startled me.  Here are some random thoughts which I suppose is more than appropriate since when I was told I was positive (sitting in my living room by the way with my old testing site supervisor delivering the news) all my thoughts were random.  More like screams of machine gun fire that could not be controlled.  So here it goes, sort of…

When I tested positive I was considered one of nation’s leading nursing/primary care experts in HIV/AIDS care and practice.  I was a big shot with a big name.  I traveled the world and lectured.  People listened to me.  I had a major platform and I was not afraid to use it.  I sometimes spoke nicely.  Usually I yelled.  I told congress to get their heads out of their asses on several occasions.  I even muttered a ”fuck you” to the POTUS.  I knew everything.  I was fucking Dr. Richard Ferri damnit it all!

When I was told that I was HIV positive myself I instantly knew that I knew NOTHING.  NOT A DAMN THING.  Sure I knew the science and the medicine, and I even thought I knew the psychosocial issues.  Bullshit.   I was totally stupid over the “real” issues of testing positive.  Fear.  Intolerance (Honestly, some of it was just plain old hate thrown my way by some of my very own nursing and physician colleagues and friends.  They were furious at me.  To this day there are nurses and doctors that won’t talk to me because I became “one of those people.”  This shocked, scared and saddened me tremendously.  I felt totally abandoned.    I was even told by an AIDS colleague that “since I tested positive I turned into a big mouth and I should just shut up.”

I wasted a lot of time trying to treat myself.  I could not.  No one should.  But I was scared to trust anyone.  It took me a long time to find an AIDS nurse practitioner I could totally trust.  Shelia Davis, MSN, ACRN, FAAN was the wonderful woman.  Sheila was very kind and patient with me as I fought her and everything along the way.  When I really started to crash and burn she actually had to sit me down and tell me it was time for ME TO LISTEN TO HER, SHUT THE FUCK UP, AND DO AS I WAS TOLD….talk about tough love!  Not only was it tough but it worked.  Here I am some 15 years later and because of her skill, care, and knowledge I am still on my very FIRST antiretroviral regimen….yup 15 years of the same damn pills.  I am so on the other side of the bell curve.  But the funny thing was I was scared to death to swallow a pill.  I had been preaching to the masses about taking ART and now the though made my guts run cold.  I literally threw up just thinking about it.

Having the level of knowledge I do about HIV, health care practice, and nursing and medicine is NOT very much a blessing.  I know all too well all the fuck ups that get swept under the rug every day.  (Testing positive made me a much better AIDS clinician because I now know the reality and the harm with bullshit coupled with bullshit.)   I became hyper-vigilant.   Everything done had to be repeated.  I was frantic.    This was also one of my “jackpots” to increase my alcohol and meth use.  I was a mess.

I decided (and have never regretted it) to fully disclose my status to the world.  I did it on National Public Radio, via my then weekly newspaper column, and from the a major AIDS meeting  podium when I was awarded the Association of Nurses in AIDS Care second life time achievement award. I just stood there in front of hundreds of people and said thank for the honor and by the way I tested positive a few months ago and I was scared shitless.

I tell patients my status all the time.  (I also tell the about being in recovery).  This is a doubled sided sword for sure but it is worth it.  However, I could not rely on my HIV status to make me a good clinician – I had to prove to everyone (mainly myself) that I knew what I was talking about medically and clinically.  I did it and it has worked well.  I sadly have a waiting list of more people than I want to think about who want to be in my practice because they want an out HIV positive provider.  I also know it really isn’t about me but they want someone who actually is walking their journey.  That I get big time.

I was also scared about the “usual things”….would I die soon?  Meds?  Could I really take all those pills every day?  The potential side effects scared the hell out of me.  I was lucky to have Shelia who totally understood and helped me develop a “game plan” before anything happened.

The worst symptom for me is fatigue.  Here I am a muscle bound jock that swims, runs, lifts, and is also a personal trainer who sometimes needs to nap after a shower.  The fatigue is overwhelming it can force me to stop on the side of the road and cry.  I also HAVE to lay down nearly every day on my exam table during my lunch break just to keep up with my afternoon patient load.  This is not an option!   I HAVE TO DO IT OR I DON’T SEE PATIENTS!  (Again, I have a boss that is wonderful and who (sadly) has a brain tumor so she “gets it.”

Nurses caring for anyone with HIV (a poz nurse or not) should NEVER assume anything.  Talk the person like a person who is HIV positive.  Do not presume they will know (or will understand since it is happening to them) what you are talking about or trying to say.  However, do not talk down either.  Establish “ground rules” for communication.  Tell the patient that it is okay not to understand or to be scared.  

Testing positive takes away so much from anyone (or at least it first seems that way) that is why whenever I hear Diana Ross sing Reflections it makes me stop and think.  What the fuck has HIV taken away from me? Listen to it.  The lyrics change for me every time.

But here is what I have today.  Less random thoughts.  A good immune system.  The same old symptoms that kick me in the ass and my close friends and sobriety.  I also have my partner Dr. Jim Lear who loves more than anyone on the planet.  Jim stays with me now matter what.  He honestly loves me.  God only knows I have given him many “escape clauses” to exercise but Jim loves me and I love him.  That is what I am reflecting on tonight.