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Ordinary Time

| 18 Comments
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.

18 Comments

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Comments on Richard Ferri, PhD, ANP's blog entry "Ordinary Time"

Oh Ric you always hit the nail on the head for me. I became a widower on September 12, 1992 and often feel it was just yesterday. After years of throwing myself into work and meaningless sexual relationships, knowing I have this stigmata as you call it I have found a kind of peace but it is always there, the loneliness, the sadness, the fighting of getting up and living every day. Your words pierce my heart and soul but they need to be heard and felt. Thank you. Your friend.

When my partner of19 years died "friends" began to call me the widow which I detested. Then when I was still mourning after two weeks I was told to get over it. I did so by getting a new group of friends. It was hard enough dealing with my AIDS diagnosis let alone coping with losing someone I had spent nearly half my life with. It is a pain and anguish that to this day still brings tears to my eyes. I spend half my time numb and the other half fighting just to get through the day. While we each endure in our own way, your words rang a truth within me that resonates deep within my soul.

I connected here through Twitter. I was single when I was diagnosed with AIDS in 2007 and still am single. I didn't lose anyone close that I loved to AIDS related illnesses so I can't really relate to you losses of loved ones or those who posted on here of their losses. So why am I here and why am I writing.
I was literally brought back from the dead due to the new anti-virals and the new treatment approaches. 50% or more of me died that day not physically but mentally and emotionally and it still continues. I was slapped a diagnosis and given scripts for meds and told to go my own way and have a nice life -just like that.
I walk around with a strange sense of detachment due to the stigma of HIV/AIDS. I look healthy, no health issues, but I just imagine what it will be like to tell everyone I have HIV/AIDS. I know it will not go well, I will be told to get lost and never reappear or be treated like a leper in this 21st century. Inside I am mad as hell of the silence I must keep, its deafening.
I no longer form close bonds with people due to disclosure issues - yes fears of rejection or retaliation. You summed it up so eloquently, it is a stigmata.

I remeber the day I found out, man you ain't lying about that... It's like getting beat up & shot all in 5seconds... Then you find out Dr. Frankinstin is in the Emergancy Room..
Then you find the rollercoaster ride is just beging.... "AND NEVER GOING TO STOP."
One of two things happens after time..You lie down and "DIE."
"Our you get up and start kicking ass & taking names....!!!" Of course for all of us, there will be a point when enough is enough.
It's you and God, nobody less. Love the one that cared, and screw the rest...!!!
Ric, your blog, comment touched me, it come down to weather a person looks back at their qwn life.. And can you live with.

Doc

In all the "reading" on so many sites, nothing has hit home like this! I was told I was POZ in 2004, and like many, ignored it. In 2010 I was almost dead, had my family near me, somehow I pulled out. This article just makes me cry, it so states how I feel, and up till now been unable to express it to my family and friends.

Bill
Columbus, OH

Guys,
I lost all of my friends on both coasts & my sweet partner who was only 29 in 1992. You don't really 'get over it' but I refuse to allow my HIV status to stigmatize me. I always disclose my
status & 'let them get over it'. Being poz is a fact of life but it does not & will not define me. Are we so thin skinned that we allow something we cannot control to run/ruin our lives.
WAKE UP ! life is too short to wallow in depression. This ain't eloquent but it's REAL.

DEAR DR. RICHARD, AFTER BEING POZ FOR 26YRS. I TOO FEEL THE BULLSHIT OF LIVING IN THIS BODY. HOWEVER I'AM SO GREATFULL TO HAVE AN EX-PARTNER AND MY BEST FRIEND TO SHARE THIS LIFE WITH. YES! SOMEDAYS ARE VERY HARD TO GET THROUGH. TODAY WAS NOT SO BAD FOR I WAS HERE TO READ YOUR WORD THAT MAKE A DIFFRENCE AND MOST OF ALL EXPRESS FOR ME TRULY WHAT IT IS LIKE FOR THOSE OF US WHO HAVE BEEN AROUND FOR A VERY LONG TIME LIVING. JUST LIVING! THANK YOU FOR YOUR VERY TRUE WORDS. R.M.

Thankyou Richard for sharing such simple yet powerful words with us. I relate very well to what you say after having lived with this for 16 years. Often I feel there is nothing or no one left for me to relate to in this life other than my own imagination, but to read your words was like being given a huge friendly hug from a stranger as if to say, everything is ok, even when the world tells you it isnt. Thankyou again for sharing.

I’m hearing what each of you is saying and it’s real. But, guys, with all due respect, I’m troubled because what I'm reading from some of these posts is ultimately defeat. We’re not victims of this virus.
I recall the early days of this “gay cancer.” I wasn’t even out yet and reading about what was happening then scared the shit out of me. I, too, have had friends die of AIDS. And in 2000, the journey that belonged to someone else suddenly became my journey. And at the beginning of my journey, my diagnosis represented everything that hurt me, from internalized homophobia to a broken relationship to reckless abandonment of my own life. And for a period of years I lived in a hell that no one, save a few, could even begin to understand. I was scared. I was lonely. I yearned to be loved; to know that someone could just accept me for who I was. But, no. My experience of the world was bitterly cold. I felt brave at the beginning and so I chose to disclose to “partners.” Many of them walked away in silence while a few said “I can’t deal with you,” as if I was some sort of trouble to them. Soon, I wasn’t even good enough, or “clean” enough, for a f**k. The world wasn’t just bitter cold, it was heartless, too.
In time, I learned that I wanted to survive, that this wasn’t just about how I believed others viewed me. I realized I had power to change what I was feeling & experiencing. I understood this power because I was willing, no matter how frightening or difficult it was, to engage my life and to dare to make things better for myself. I was no long going to allow anyone’s attitude or words to knock me down or keep me down. And I realized this power resided within me after daring to be tender with and loving myself. And then I began to understand my own humanity. The guys that saw me as some sort of trouble, as unclean, well, that was their problem. And the guys that walked away silently, that was the silence of their fear. None of what they felt belonged to me. Their fears, their ignorance, their judgments, their silence belonged to them.
No, we don’t get over what we have felt or experienced. Nor do we have to. But, those feelings and experiences can become an arsenal to reject the stigma of those who reject us, of those who judge use and those who live in ignorance. And the right time for each of us to do this is up to each of us individually. There is no common time frame. But, each of us has to be willing to take this head on.
For me, it hasn’t been easy. But, I have discovered along the way that there are some wonderful people out there. And, if you have any doubts about this, do an AIDS walk and you will see the compassion that lives out there in that otherwise bitterly cold and heartless world.
I’m HIV+ now 12 yrs.

Another thought, i'm straight, gay, straight this curse effects us all, but I'm not some stupid street junkie shooting up in public bathrooms.. I've been paying my own rent sense 14yrs old..
To someone in my position, there's no one to talk too.. Found out in 99 but must have got when I got shoot in S,F, in 80(3pint of blood) or after I got out in 84, cleaned up act 87 was happy as 2peas in a pod, till 98 new some thing was wrong, 1999 I found out.. You guy talk about lose of mates and loved ones, well I'm all by my lones some.. Just very few know only my truest of friends an family. Otherwise no one needs know CRAP unless i want to screw.
At least it seems you folks on this site get some support. I make my own road.
"KING OF THE WRLD" Steely Dan take a listen, then My Old School..!!
Doc

Hey Richard,

I am damned angry myself... as I have become an old man living two years at a time and I just keep going. All my good looking rugged buds are gone...a long time now. I have ... for the lack of an easier term, one fag hag left. We both lived in L.A. and she knew every bartender in Boy's town. So did I. That is how she met me. We have been to many services together, the hell of it was, it got so routine. Me? I've had all the O.I's, except the Macular Degeneration , where you are given something like 3 days to live.
In the movie, now playing on cable, "Dead Ringers", there is a quote given by the doctor, Jeremy Irons plays, where he answers the question asked by the actress about ...his drug use? He gallantly stops her in her tracks and says no... but then thinks..."Well, only for pain... Pain distorts character... and that is simply not necessary." My pain... my pain..I lost count of how many times I have been under the knife and my back keeps my character distorted, so much so.... having AIDS for 28 years, HIV negative friends can no longer take my distorted character... and you know what? That really pisses me off, just when I need people around, they want to move onto to a life without potholes. I read "Dead Ringers" years ago and the distorted character reference to pain does not keep me from having AIDS. I think of my HIV negative friends, who do not understand that passage, even when explained to them...they are getting ready for the next Ball, wherever it is. I would be dead by now if not for the persona that lives for me.... my ART. My recognized art drags my body around and will not let me move seamlessly into one of my whimsical paintings with polka dot mountains and dogs with wings and smiling pink alligators. I do love to paint... so I live on, I paint and live with my pain, alone.

As always I am humbled by all the readers kind words posted here and to many, many more that come my way via personal email and Facebook. (Sadly, even in the "anonymous cyber world" the vast majority of my readers are frighten to post on this very public blog; this breaks my T cells into tears.)

Please know how much you help me. In fact this morning has been a very difficult one for me. I am facing the onslaught of a "colleague" (a board certified infectious disease specialist nonetheless) who is hammering away at me at every opportunity and has made it clear to me she is stirring the pot by brining my own AIDS diagnosis into question regarding my cognitive abilities. I am thunderstruck with pain, grief, and self doubt. I am considering walking away from a 30+ year career in HIV/AIDS.

Stigma does indeed exists. But as I am learning it is not just the stigma of uninformed or those who hate; stigma against those of us with HIV by others who are supposed "on our side" I suppose this just breaks down the notion that people cannot be categorized by their eduction, political afflictions, and such. AIDS stigma is real and we are all the recipients of it on a daily basis in so many ways.

I do not know if I have any fight left in me.

Thank you. Sometimes I feel more alone now than I did 21 years ago when I was diagnosed. I feel guilty that I am so absorbed in my grief these days, mourning alone. The only loved one who could possibly understand on some level has been gone for 19 years. Now, as a 46 yr old woman I feel 65+, look who knows how old, and just am tired - not just physically fatigued, but really, really tired. I want to make a difference, but I can barely take all 35 pills of my own every day, how to help others? Anyway, thanks for making me feel "normal" for needing to "wallow" once in a while.

And if the panic is over....why are we still breathless?

I so do love the conversations that occur with my blog. What we are all talking about here is coping and living in times that may seem ordinary but when viewed through the lens of the T Cel membrane can be confusing and and uncertain. This is not a pity party. I am way too old for that. This is my reality and this is your reality. Lets continue on in our support of each other. I need my readers more than they need me. You provide a level of comfort and inspiration that allows me to continue to practice HIV medicine and come into some harsh realities everyday. I can see myself in my patient's eyes and wonder what God has in store for me. For now, I will put one foot in front of the other, be grateful, and try to be best damn HIV practitioner I can. It is my mark and calling and words are my refuge.

Richard, man you must be shook, being in the "FIELD HIV?AIDS" for so long and have Some C... push your integerty (i'm a treble speller)
30yrs I applaud your deadication your staimna & openness.. As far as frightened to come out with it in your open form(blog) hell I'm bearly no how to run one of theses things(pc) Plus I've always' lived in the shadows... Call me the "JACK of SHADOWS"
How's the song go? "I'd respect a man that had it all an threw it away, but I'm not the kind I wouldn't mind a chance thrown my way." That somes it up..!!!
Thunderstuck...!! man I'm with ya. I no theirs nothing I can say(kettle,pot & black thing)
But when it comes right down to it. It's only you that can make that "STAND" otherwise SCREW THEM ALL>..Gotss to live with self.
I've enjoyed this PC crap with you, U touched me, and that ain't eazy..
Good Luck (boat drinks) Most likely you want hear from me again. DOC Holiday

When you write that you feel like a widow, do you mean that you are mourning for the self you have lost? If so, I dig it.

This has been the most fragile periods of time in my life - ordinary or not - it is well beyond time to pull myself through. So how am I going to do this? One of the ways is by telling on myself...something that has always helped me, and the other way is by you. Reaching out. So I am asking for a favor from my readers...kick me in the ass. Demand I get back and write. Stop wasting my time at the pity party I have been attending non-stop since I got laid off. I have come to realize - once again - that the world spins very nicely without me. However, I ain't doing so good without the world. So time to lick my wounds, get my T cells in order, and move forward. I have no idea what the hell that really mean except to do what I have been doing is insane. Over the years of writing this blog I sure have been free with advice and sometimes harsh words for others and now I find I need them. So please don't let me off the hook. I promise by Thanksgiving monday to have a new blog, a new view, and slightly improved but still damaged me for all to see.

I was diagnosed in 1988, and I don't need to tell you how bad it was in those days.The Dr told me I probably had about 2 years left to live.

Having lived thorugh all that, lost friends, lovers and others to AIDS, spent time in a hospice waiting to die, I can say that life with HIV today is immeasurably better than it was.

That doesn't deny the ongoing stigma and pain that living with HIV brings. Today the social stigma is worse than the physical side of it for many of us, and a lot of that nasitness comes from within the world of gay men, afraid of what we represent and remind them of - "You could be me".

But as much as my world has been shifted and shaken, re-shaped and tyrannised at times by HIV/AIDS, I am happy to be here, happy to be alive still.

Sometimes I mourn, and I never deny the pain that others feel, but for me, life is not so bad.

Life's not perfect, but it never was.

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This page contains a single entry by Richard Ferri published on October 9, 2011 5:26 PM.

A Reconstituted Man was the previous entry in this blog.

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