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The Wall

| 20 Comments

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. 

20 Comments

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Comments on Richard Ferri, PhD, ANP's blog entry "The Wall"

You are one of the few writers that actually understand what my life is like. I hated having to leave my job as a zookeeper because I loved it so much and worked so hard to get to the position I was in but my body would not let me do it anymore so I retired and tried to party the pain away in a bad relationship with lots of drugs and more sexual partners then I could ever want to remember. Three years clean, single and celibate I have good days and bad days but few "normal" days. I see the Wall.

Thank you for sharing, writing what so many people are feeling but can't put into words and fighting the good fight against a disease that many people turn their backs to. I don't know you but I love you and I care. God loves you too and you will ever remain in my prayers along with those living this same fate in deep despair and silence. Again, for giving them a voice. Thank you.

Yes seeing the Wall is scary...horrific actually. So take deep breaths and help me through this phase. What is it like? I get so much more than give on this blog and in my life. Sometimes I am just scared shitless.

Ric, I had to read it over again as I was quite lost for words the first time round. You always capture things so spot on. For me, I accept that its ok to be scared shitless sometimes - lots of the time, its normal, I am human and I dont need to please anyone anymore. I just need to be me. Listen to your body Ric, it knows you better than anyone - listen and decide with your heart. God bless x

As I sit here with the beautiful sun shining in my window and finishing reading your heartfelt posting Carol King popped up on my Pandora radio singing youve got a friend. What came to my mind is embrace the wall.The wall is your friend.Every thing is going as planned. You have done all you can do.Sit back and take in all the beauty that God has graced us with. You are soooo loved!!!!! and so beautiful and so talented.All the best to you Ric. I dont know you but will be keeping you in my heart and my prayers. Thank you for sharing.

I think the Wall is just the Wall...and we all have to deal with it in our own way. Does not mean I am not scared...like Hugh Prather wrote: "Fear is often the indication I am avoiding myself."

Wow!!! just wow! That someone could put into words, and so eloquently, how I feel when I allow myself to think about it. I already lost one job because of 'the wall' and as I am quickly approaching 50 year old, I wonder how long I have before this illness force me to make some hard decisions. I've been positive for 22 years and it scares the crap out of me!!

The folks that should understand HIV the most seem to put up the highest walls. I am talking about other Gay men. The women not as much. I am kinda over the whole damn scene. I have to stop myself from cutting others short. Even my Positive counterparts. I think the older you get the less tolerance you have for the amount of bullshit that seems to exist in gay life. I like to go out for an ocassional drink, but see the same folks getting blitzed. One of my best poz friends is drinking himself to death. I feel more and more I never really had much in common with them other than liking the same sex. I know their are others like me.

How can any of us who live with this aweful disease not see and feel the wall. The feelings of abandonment and isolation are suffocating. After living with the virus for over 22 years now, I too am tired of it. Will it ever go away? Will I ever stop fixating on it and what it has done to my life, my friends, my family? Does anybody care? Even in our own community, we are stigmatized and judged. Yet, as Mr. Ferri honestly states, we trudge through. Going from one drug refill to the next. I look forward to the day when I don't call in the next refill. However that may happen. A cure? Doubtful. More likely by one of the many pathogens that call my body home.

You know Bob you are sadly right. Yet we don't talk about being shunned by many of "our own" yet it happens everyday. Not everyone lives in places where there is outreach, caring and acceptance. Some of us live in little spots of hell. But remember no matter what the situation is for you, for any of us, we are all in this together as fragmented as it feels at times. I think one of the big things that has to happen is that those of living with HIV have to take back control of the HIV health care and support systems. It is time for a change in leadership. Positive people need to be out, in the forefront, and get out of the back of the bus. I hear a distinct sound of the need to rattle changes and shout welling in me.

Like everyone else has already said, this is a good article. It creates awareness and is insightful to the reality of life for many gay men who become consumed with their sexuality and lose perspective on life. Thank you for posting this article. I really enjoyed the read.

I have been living a very isolated life being a gay man who has beat the virus since the mid 80's. I just read this blog for the first time and was puzzled initially, then shocked( nurse w/a unit of patients "clump of problems"), then I was validated, as it has articulated my personal pain. I go to my a.s.o. and don't find l.t.s. w/a.i.d.s. It has a large number of newbies ( which I find overwhelming), but nobody who has been there since the beginning. I too have been looking at this "wall" for sometime and have felt lost, alone, in pain. It's nice to know in some way that in some way I'm not really alone, and perhaps l.t.s. will come together and address our mental and physical health issues like we did @ the beggining of the pandemic. Thank you and know you are not alone in your struggle.Aloha, Eric

Keep reading folks and posting...plus send along my link to anyone you want. It sometimes gets lonely on this side of the monitor. It seems no one, (my perception) no one wants to hear from an HIV survivor who practices HIV medicine and writes about his life and truth. I think I sometime scare people. I sometimes offend (but nearly as much as I am offended). But we need a voice. Strong voice and it cannot be a solo voice. Time for ASOs, medical practices, and the AIDS gang to cut the crap and make way at the table.

Wow! You know my life so well. The pain of everyday living seems almost Too much for me to continue. I do continue because so many are depending on me. I just want to go away, curl up and be left alone! Thankso for great article......at least I know I'm not alone.

Johnny and EVERYONE....No needs to be alone in this fucked up epidemic. We sometimes create our own hells...I know I AM EXPERT AT THIS. Reach out...pass along this blog...scream at me in writing....that is one of the main reason I live my life so openly on these pages; when I open a vein and vent I not help you I help myself. Consider following that lead. Ric

As you look at that wall and see the sheer bulk of it, look closer to see the writing that's etched in it's facade. The writing says that you are loved, you are prayed for, and you are not alone. Though some of us who read this blog are not experiencing the every day nightmare that you are living through, we can try to walk it with you, in spirit if not in the flesh. Know that even "behind the monitor", there are people who are holding you up and walking with you, hearing you, even though our voices may not be crying out the same way. I hope this brings some measure of comfort to you. Sending you hugs.

Richard, I am also at this point. I just had back surgery and it is taking months to get my strength back, and then I have another surgery to look forward to. I must have hip surgery because of avascular necrosis in my joints.

So I see the wall also. And like you, I am living with daily pain. Unlike you, I'm not good looking, so I don't even have the comfort of finding someone to love. Lipodystrophy has seen to that.

I'm lonely, but satisfied that this is where I am right now. There is a line in the poem "Desiderata" that gives me great comfort:

"And whether it is clear to you or not, no doubt the universe is unfolding as it should."

Love that depends on how a person "looks" means nothing. It is smoke and mirrors that does not merit your beauty. Remember that. I do every time I see my fading reflection.

Hey, I was thinking about you today. I was wondering about something completely unrelated to you this morning, and then said out loud in response to my thoughts, "Good gravy Marie!" That, of course, made me think of you, so I decided to check in and see how you were doing. I'm concerned that there are no new posts from you in a couple of months. I hope and pray that you are ok and not feeling as bad as you did in your previous posts. I continue to pray for you, and send you hugs, though they are virtual, they are heartfelt nonetheless. Hope that you check in with us soon to let us know how you are. <3

There wil be new post in a few days all...I know..I know..it is just that life is messy sometimes and sometimes it is not always my mess that gets in the way but too much has been said already. My head is filled will jumbles of broken T cells that will form their way out by the holiday. Bless you all for your notes about my writing and posts...and recent lack there of...(feeling somewhat like Sally Field): "You like me! You really like me!"

Okay batshit to that but I will write anyway.

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This page contains a single entry by Richard Ferri published on April 15, 2011 7:17 PM.

A Dent in the Wall was the previous entry in this blog.

A Reconstituted Man is the next entry in this blog.

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