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Author Topic: a thought  (Read 1100 times)

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Offline em

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  • Posts: 427
a thought
« on: November 13, 2018, 10:18:47 am »
lets see if I can do this thought I had  justice

 a plea for us and for those yet to come



there are over 36 million or so people living with HIV

as hard as it may seem and as  lonely at times it  may feel 
 

those of us who have this burden can live as well as we can as long as we can. It is our duty  our obligation to carry on  This could be our legacy our gift to others facing the same or even a similar challenge. now and in the future  To be an example to others facing challenges that if we can strive grow and offer to others through and by example.

In that if we can do this minor thing by just living and holding on to just as many days as we can ; the more the better. Then this will be our gift if not all that note worthy as it might seem. just maintaining our lives and trudging onward. It might seem to  the individual to not be much but being an example of accomplishment even if seemingly small it still would be a light in the darkness for others treading the same path. a trail we have blazed just by trudging down the uncharted wilderness of life we have found ourselves pushing our way through.


I am sorry that I do not have something more enlightening to offer some inspirational words of wisdom to impart to anyone finding themselves in a similar situation. A promise of better days might not be true but the hope and faith to guide an inspire others not to give up. better days should follow even if it might be hard to beleive and comprehend;even when it seems that darkness is the only aspect of our existence. offering a ray of light  by some slight seemingly trivial insignificant detail like simply living another day might seem to the individual living through it . that could mean the world to someone else finding themselves riding down the same road  we find our selves trailblazing moment by moment ever foreword without giving up .

 
just a thought from an old man trying to give some small worth to a life at least to me does not seem very accomplished or rewarding just barely getting by day by day. One day at a time. Carrying the burden a load that seemingly justifiable holds us back from the person and having the life we thought we might have had.  that this virus can seem to have resulted in our lives


I know that others might pick apart the pieces of this short observation to point out the flaws without noticing the intent of its entirety. That is to give value to a seemingly small trivial unnoticed accomplishment  that is just the ability and desire to take another breath.

just trying to put into words the value of a moment

to ourselves and those who are following down the road of life just behind us

others might offer a critique of the small details without noticing the entirety of this as an attempt to give inspiration


all my best to you

EM
 


Offline MarkintheDark

  • Member
  • Posts: 128
Re: a thought
« Reply #1 on: November 13, 2018, 02:22:11 pm »
We're on a similar track, em.  I realized a while ago my strength wasn't in marches, organizing, etc.  My strength is targeted in smaller things.  And that has to be good enough for me.  This certainly isn't the life I want or wanted, but it's what I've got.

To wit, in the midst of being sick last month I was treated with utter disdain by people with an HIV/AIDS agency who should know better.  It was just one office.  And I'm just one client.  But their behavior towards me was so dismissive, outrageous, hypocritical and disrespectful I filed a formal four-page grievance with the help of an advocate.

The gist of it is that these people, by their actions, actively discouraged me from access to my physician.

tbh, I don't know that it will affect anything.  Most importantly, however, I went on the record.  I specifically challenged those involved to go on the record, as I had, to justify their behavior towards someone who was sick and who was an LTS.  What I can say for my advocate is that he made certain my grievance got exposure.  At this point, all I can hope is that there are perhaps a few other individuals who've raised as much hell as I have.
HIV dx - 02/93
AIDS dx - 07/01
Rilpivirine/Cabotegravir guinea pig since 01/17

Offline OneTampa

  • Member
  • Posts: 2,911
  • "Butterflies are free."
Re: a thought
« Reply #2 on: November 13, 2018, 10:21:47 pm »
EM and Mark,

I understand your points as a Freshman Senior and going 34-year Survivor.

Your posts prompted me to write the following poem:





Best,

OT
"He is my oldest child. The shy and retiring one over there with the Haitian headdress serving pescaíto frito."

Offline em

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  • Posts: 427
Re: a thought
« Reply #3 on: December 17, 2018, 01:21:51 am »
thank you for replying they mean the world to me

for me at least it was not long ago
 
My old PC with the CRT ( cathode ray tube )  monitor and the large box what was it called back then ? under the table we used as a desk with dial up ?

 some of you out there  might have liked the banter and patience it had taken to try and figure out what was being written
this site used to be at least to me a kind of a chat room with all kinds of this and that back and forth in real time it was non stop

now it is kind of tame in comparison

hopefully soon if all goes well there will be no need for this at all


with in the next ten years hopefully when a cure is found will the last one here please shut off the light when you leave


for now as  I sit thinking of what might be a reasonable note or short message that someone might like to respond to? something lighthearted  and hope full and reassuring to ponder ? If anyone else can think of something please chime in ?

even though the responses are not as numerous as they once were they have been very kind and hopeful not the aggravation they used to carry. but that was many years ago and a different server or net work provider. there are other places people go to communicate these days

please pardon the lack of reel content in my posts it just helps me to sleep to try and contact anyone out there that my be just there looking for something to relate to it might not be of much help in ways we truly need it knowing there is an out there to throw up thoughts makes it worth while at least to me

thank you for being here to write to

all the best to you


Offline em

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  • Posts: 427
Re: a thought
« Reply #4 on: January 19, 2019, 11:26:12 pm »


An HIV love story from along time ago
when the roof caved in



A guy enrolled in college after serving in the military. He uses the GI college fund to fulfill his  dream of going on to higher education. While there he meets  the most beautiful woman his eyes had ever seen, He asks around what her name is . then on his way to class he see her staring off into the morning sky and says why good morning  ( her name here ) How are you?while saying this he thinks and is expecting her to say how dare you speak to me can't you see I am way out of your league!. Or for her to say how rude for you to even try to talk to someone as beautiful as I am .  Or something equally shocking painful and demeaning

But she says

I have been so busy lately not enough time to stop and just enjoy life. With this and that going on,  life can be so full of things to do. thanks for asking then she smiles He smiles and giggles while thinking to himself she spoke to me. shocked bewildered and surprised that she would have done so he figures this is so much better then what the best he could have thought would happen that could have been  he thought would be. that she would say fine and you ? He would have said same here and that would have been plenty for a first or even last conversation.  But no she even smiled as they just stood there looking at each other .  he thinking this was the moment he had been dreaming of his entire life. just taking in her essence and complete  kindness Then it would be a cherished memory he would hold in his heart through many dark days and years ahead.

He goes to a corner bar down the street from his apartment sits at the back of the bar quietly drinking  a draft beer and thinking about how his life in college was better then he could have ever thought it could be . then he sees her come in with a small group of friends and sits in the front of the bar. He sees her and she motions to him to come over and he thinks this is a dream. He walks over then a smiles and beer belch comes over his lips  and thinking o my god this is horrible what do I do now? She looks down and then chuckles a kind forgiving  laugh.  One of the guys she is with in her group takes him aside and says I am in the service. I can see she is very into you  and  I am very interested in her friend lets get  a  motel room and have the time of our lives. he looks over at the friend who has had a few to many shots of tequila. While considering inviting them to his apartment he thinks the friend is going to lose her cookies at any moment while she is having trouble keeping from falling of her bar stool. 

He concludes nothing good will come of having this girl this drunk in his home .


SO he concludes it best to take the two girls back to their dorm. when the drunk girl staggers over to the dorm the other girl goes over to him. He says your friend is going to need your help she is in for a very hard night ahead.   

He thinks how he should have taken her back to his place if just for the time to spend with her. 


He gets a letter to call a number. He had thought it best after time in the service doing things lonesome military men do  men like the one he had met at that bar he should defer planing the rest of his life he should have himself checked for any illness that might get in the way of a wonderful happy long life he was trying to build. He calls the number and they say they needed to see him in person so he says what is this about is it AIDS the guy on the phone says yes it is ? after he faints he gets up and goes to have this talk with the guy on the phone. how long ago was this the phone was on a wall with a cord .

He keeps to him self shut up in his flat  trying to figure the best way to exit this life before the virus causes him to suffer and the thoughts others would think  of him after they found out he had the big bad virus.


 
He runs into this girl a few years later standing alone outside a coffee shop. He says high how are you (her name here) just as a handsome young man exits the coffee shop holding two coffees. so he smiles puts  up his hand  to wave good by and walks on.


Never having told her about his HIV his feelings and just how much he cared .  well they had never even kissed do to his fear of ruining the right moment and he had thought being patient was the best plan. Maybe waiting till after they graduate college to get serious with her . maybe this would be the best plan  If  that anything was going to happen he would have never wanted it  to end .  So HIV had come into his life and he had thought she should have a perfect life not one watching him die was not what he had wanted for her.  she had never known his secret

He had as they say now,  ghosted on her

they never crossed paths again

a love story that never was

now it is thirty years plus some later. the young beauty that had come into his life is a sweet memory  of young man giving away the best thing that might have ever happened to him

they say life is hard making life choices with  HIV multiplies the magnitude and complicates making the right choices increasing difficulty.


just a story about HIV . the road  life takes. like the saying life happens while you are making other plans you have to play the hand you are dealt

an old mans story about HIV he wanted to share with complete strangers  to see if anyone else has had experiences like this I am sure I am not alone in this kind of happenstance.

all the best to you

EM


 



 

Offline em

  • Member
  • Posts: 427
Re: a thought
« Reply #5 on: January 22, 2019, 03:22:26 am »
I should search for it . I wrote someplace here about while at college this professor had said. My feelings on AIDS is Like a New York cab driver would say "Not my problem" . Then after class I walked up to him. just the action of walking up to him in front of the entire class I had thought the rumors would spread and I was going to regret talking to him at that time. But he had said when I walked over "am I in trouble now" ? . But alone without anyone else. I bet he had given that same speech to every class he taught. I was the only one to to say anything to him at all. It did not help that I am HIV+ at that time and new it. Granted I had said that I could not be at his tutor session on Wednesday night because I had another class. the fact that the entire class saw me walk over to him after what he said they did not know what i had said they just saw me talking to him.    I can only guess what rumors where said about me. when I turned around every student had left. It was like they did not notice or care. they may never care and as far as I can tell they never will.



then when I saw a news letter they had sent me from that college about a documentary about  AIDS in Africa. I had thought AIDS in the same town the university was in was not a picnic either ? That the hospital in the same town did not have an AIDS out patient clinic or even stock HIV meds in their pharmacy. they did not know about it or even do anything then and still do not  now . they threatened to have me arrested and if I even trespassed on any college property including the computer network they would fine me ten thousand dollars ? 

sorry I have just spent twenty plus years watching grass grow while continuously without end repeating over and over in the back of mind thinking  when a cure comes I could pick up the pieces and  have a life again.

after twenty plus years I realize the pieces are not there  to pick up again and I am just an out of shape old man.

I just wish I could write something say something that might be worth reading

just wanted to write something to help make the isolation loneliness and realization that I am old more bearable to me . when twenty something year old people talk about those old people they talking about a person like me

when I wrote when the roof caved in ; in the upper post. I had meant when I got the HIV confirmation diagnoses. well I could write more and more but I think i Have burdened you enough with my pointless stories

I did graduate from that college  I did have a somewhat life so far. I have seen my nieces and nephews grow up and have children of their own. I did raise two children  from babies into teenagers  I did see my grandparents pass away and my younger brother pass away.  SO yes I have had a life maybe not the great road of all things life has to offer but a good life.

thank you for having this place I could share a small part of my HIV life with you through

all my best to you

EM   



« Last Edit: January 22, 2019, 03:31:44 am by em »

Offline em

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  • Posts: 427
Re: a thought
« Reply #6 on: January 24, 2019, 12:10:09 am »
I know I had already mentioned this but a few details I recalled that  might make it a better read

In the mid nineties my immune system was compromised my tcell cd4   was in the single digits and my viral load was in competition with the national dept to see who could grow faster and be larger.  I recall my ID doc telling me it was important to remember that number. I thought all it meant to me was I was going to be dead soon 

My weight was around a hundred pounds and food went right through me going out as diarrhea. I had skin ulcers that felt like sunburns. I was sick and with no hope

Now I know I did not mention this part when i first went to the hospital an hour drive away for the drug trial that i had drove myself too. I found a parking space and the walk had taken me about a half hour to cross the parking lot stopping to lean on sign posts to gather my strength and a bus stop bench to sit and try to gather my strength again just for a moment  for the rest of the that time seemed an eternal walk.  then after a while on the drug test it was months of taking norvir and sequenivir in a liquid for the drug test.  My ID doc had told me I was undetectable for the test at that time and they had a new even more sensitive test and that one was also  undetectable. I  parked my car walked over to the last  appointment  for the drug trial .  The walk form the parking lot  to the hospital  was a leisurely quick five minute slow stroll   I  and stopped to looked  at the distance and thought how far it had seemed a few months earlier. I checked out the sky and the thought crossed my mind that i might live for a while.  That was around 25 years ago. I have had  to the best of my knowledge undetectable blood tests  ever since. sorry to make it sound like I am  bragging but if I can do it anyone can.

not an accomplishment that any one would notice unless I tell someone thank you for being here to tell my story too

EM

Offline em

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  • Posts: 427
Re: a thought
« Reply #7 on: February 13, 2019, 09:43:41 pm »
was just thinking about the post fear


I had come up with this about fear and HIV

sorry to bring you down but this is my thought on fear 

fear:


My biggest fear someone will come up to me and say "I have HIV. DO you ever think about the people you may have given HIV to, and the people they may have given HIV to and that you were a link in a chain of despair, destruction and  devastation that  destroyed lives and left death in its wake" ...they say "you do not remember me but I think I got HIV from you" true or not it would crush me  ! the look of deep emotional distress, sadness and hopelessness in their eyes and face would reach right into my very soul crushing my spirit in the knowledge that there is nothing I could do to make it better . Thus  taking away all the strength from my body leaving me without enough left to take yet another breath and the last thing I see on this earth  is that look of utter and complete destruction, despair and devastation  on someone else's  face  and in their  eyes as they look right at me , with the thought in my mind that I had something if not everything to do with putting it there. nothing could fix it .

everyone has the opportunity to have sex and the virus could have come from me or it might not but thought of spreading the pain I feel onto others is a living hell. no one knows witch way the river ran . the chain has multiple links in every direction making it a more of net then a path .  Or thinking it instead of a river more like a flood just going everywhere .



maybe this could be a line the LTS uses in the play I was kicking around ?

sorry to be such a downer this something I bet no one wants to think about but the thought has crossed my mind , a few times .

I hope some day some way to ease this pain but for now sharing with you and hopping this doesn't  cause others pain to think of such a topic.

if the moderators think this to much and over the top  I hope they delete it and I would agree .

maybe I should just take the hint I am not getting many responses and maybe there is a reason that is  I am not saying anything anyone wants to read ?


I should take the hint and just stop coming here so often the story is one no one wants to hear ?

maybe If I write it as a short answer test to see if anyone wants to answer the questions ?

I hope everyone well and maybe this play will be written by someone better at writing and telling story's than I ?

good luck and pleasant days good  tidings at every turn .

EM


Offline AndyArrow

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  • Posts: 1,200
Re: a thought
« Reply #8 on: March 16, 2019, 08:39:15 am »
I just wanted you to know that someone is listening (or in this case reading) to you and I appreciated your post.

Your original post here made a great point about just living and moving forward we can be an example for those to come.  I found that people tend to praise other people far quicker and more often then they praise themselves.  It sounds like your life has touched a lot of people and you should be very proud of that. 

Hugs & Stuff,
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

 


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