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A Reconstituted Man

| 11 Comments

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. 

 

 

11 Comments

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Comments on Richard Ferri, PhD, ANP's blog entry "A Reconstituted Man"

Bravo! From one of your patients and friend. Your words just about wrap up my life for the past 19 years... actually, only the past 5 years (I feel blessed that I lived life to it's fullest those first 14 years!). BUT.... we must keep on going... there is no "giving up".

I am like that, too, at times.
This is what I have done.
I realized that I had to improve my thinking about myself, I has been a terrible experience.
I am making a study of my thoughts, on a thought wall. By using constructon paper, markers, tape, and scissors, I am constructing a way for me to see how I am thinking. When I have thoughts I realize are important, or sometimes I hear things or read things, I write them on paper, and arrange them on the wall, in perspective to my other thoughts. It helps me correct my pattern of thinking.

Richard, I have to say you are the only person who gets me. I feel everything you are feeling. I just started a class here in Pittsburgh with Shepherd Wellness on "Aging With HIV". I don't feel like I'm aging with HIV but feel like I'm dying with it all the time. During the first class we were asked to write down our hopes and dreams. Everyone in the class wrote for a long time but all I could put to paper was that my dream was to die with grace and dignity. I have no more dreams or hopes. I was diagnosed with HIV in 1988 but believe I got infected years earlier. I've buried the only man I've ever loved and so many friends that I'm just tired of pretending to want to go on. I appreciate your thoughts however as they let me know I'm not alone. Thank you.

Jesus Christ, I read this three times and I can't get it out of my head. Quit doctoring and start writing...
can do it on the toilet...

Richard, THANK YOU for being so honest. Like you, every time I hear someone tell me how good I look, I want to slam them into a wall. I just wish that these "clowns" who pretend that living with AIDS "is no big deal" could live in my body for 24 hours. I bet they'd be singing a different tune real fast.

Thank you, again, for putting into words the thoughts that have been running through my mind for far too long.

Just few will understand what we understand. They, by their good works, THINK they can and do "get it, but it just is not so. Living with HIV is an isolated journey but it does not have to be made alone as long as talk to each other like we are doing here. Keep on reading and keep the discussion going. I am about to enter a hellish day ad each of you will be with me today to help guide me in practice of HIV medicine. Thank YOU

Amazing how well you read my mind, Richard. Thank you for writing what I have been feeling for a long time. I tested positive in '88 and was diagnosed with AIDS in '94, with KS lesions covering my arms and legs. Although the KS has been successfully treated, my labs indicate I am "well," and I am in great shape due to an intense workout regimen, I still struggle daily. I went back to work in 2005 and have been struggling for the last several years. Living in a small Midwestern town doesn't help, either. My doctor will not even think of helping me reapply for disability, as my numbers do not indicate any problems. Diarrhea, fatigue, loss of concentration, depression, night sweats and anxiety are my constant companions - not to mention the loneliness and isolation I get thinking about all of the friends I have lost through the years.

No one will ever be able to fully comprehend what those of us who have been living with this disease go through on a daily basis.


Please tell you friends an-coworkers bout the blog. I would really appreciate it
Ric

Well is a feeling, not a diagnosis. I look very good on paper, but Ferri looks better in person than I do. I know you are tired of hearing how good you LOOK, but your tireless working out has been a large part of the reason I started doing it myself.
The other part of the decision was that I am getting older. This in and of itself is the greatest success I ever could have hoped for since getting infected. When I was treating HIV patients in the mid eighties, a life span such as mine or YOURS with HIV was almost a miracle. Let's not forget how far we have come, as people with HIV and as gay men (for those of us who are). We can now get married in NY State. I never expected that either.
Fatigue is a symptom that can be treated. For example look up the research at Columbia University on the (new) drug Nuvigil www.columbiahivresearch.org). It is related to the old drug Provigil (armodafanil and modafanil respectively). There might be such studies in or near Boston. Doctors can prescribe both, although insurance might not cover it (and they are WICKEDLY expensive). Other stimulants are available for fatigue related to HIV as well, although people with past addictions might consider twice before starting them.
Whenever EVERYTHING is getting one down, one should talk (as Dr.Ferri says), to others, to professionals, or to friends, because talking helps break insolvable problems into solvable pieces, and allows one to re-assume command of one's life. Hopefully.

Richard miss you keep up the good work

Oh, Honey. No, we can't immediately "fix it", although we can keep fighting, searching for the cure, keeping the issue of HIV/AIDS as much in the forefront of the powers that be as we can. But yeah, together we CAN stand it. We can stand it by reaching out in solidarity and understanding with each other, being each other's strength when there is not an ounce of strength left in us to call on. Easy? Of course not. Lonely, frustrating, sad? Always.

OK, a lot of folks are going to say, "You don't know what you're talking about" because my demon isn't HIV/AIDS but other life and energy draining medical issues. Kind of similar....not always ones that can be 'seen'....Hey, you really are looking good!......and unfortunately, also ones that are becoming sort of taken for granted. I'm proud of your FIGHT, Rick. I'm proud that you continue to do the work that is so YOU, despite the fact that your body can make every step, every action, pure hell. Believe me, I DO understand. I had to give up a career that was my joy, again, not to HIV/AIDS, but to other medical issues. I'm lucky that I found something to fill, somewhat, the gap...I was a caregiver to my elderly Mom for years, and now that she's passed, I volunteer {and work, too} in animal welfare, rescue, and daily care. But I know, sometimes I can't find the energy to put one foot in front of the other. I kind of collapse. I have to allow my body a time to rest and regroup {to my chagrin!} and during that time, I try to think of the courageous fighters like you and so many other people who KEEP GOING in spite of it all. I don't know you, but each of you are my inspirations, my mentors, my sisters and brothers in this struggle. Remembering that we are not alone....for me it helps, puts some of the grief over what I've lost due to medical complications and those ravages on my uncooperative body into a bit different perspective, and hopefully one that encourages me to go the next step, make it through the next minute or two.

You, Rick, and all of us fighting the battles, are inspirational. Truly.

In solidarity, in compassion, and in HOPE,
susan

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This page contains a single entry by Richard Ferri published on July 17, 2011 2:40 PM.

The Wall was the previous entry in this blog.

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