*@%&# YOU, ZAMON - This is MY way of living w/ HIV!

[Ronald1958]

I did not know whether to post this here or in my BLOG, so I'll leave it to the moderators....

I absolutely love people who wish their apathy and woes on everyone else and feel the need to debase anyone with a will to go on.  I guess I could have given up years ago and died – then Zamon would be happy.

I do not want pity from anyone, but only want people to understand that I did all of ‘this’ with hard work, determination and initiative and that I never had a silver spoon in my mouth.

I am so sick and tired of the ‘pity me, I am worse off than you’ by unknowledgeable people who don’t read my entire BLOG (so they know nothing of my life) and never bother to look up PML (Progressive Multifocal Leucoencephalopathy) and what it can do to people with HIV/ AIDS.  Let me reiterate – I lost everything and NO ONE gave me anything.  I should have died right after November 1999, (would that please you if I had?) but didn’t by not giving up; even when I had someone else wiping my ass, feeding me, showering me, shaving me, brushing my teeth, etc. (picture a rag doll) for the next 9 months as I slowly began to recover.  Then, the continuous speech, physical and occupational therapies over the past 7 years which I still do!   So, DO NOT EVEN START SAYING THAT I HAVE IT EASY! Oh, and as far as volunteering at an AIDS council or group #1 -they are useless here and have never helped me (never any funds a la ‘state’ or ‘federal’ funding) and #2 – I AM IN A @&%*@#% WHEELCHAIR WITHOUT HAVING THE OPPORTUNITIES TO GET ANYWHERE EASILY – ARE YOU GOING TO GIVE ME A RIDE?

For general information, I do try to help and support PRIVATE organizations here – from my home – hence the wheelchair.  Which, I am hoping my situation changes soon - through MY determination and will, not some benevolent benefactor.

I guess how I am surviving my version of HIV/ AIDS/ PML doesn’t matter to some self-loathing, self-centered so-called “activists” who think they deserve everything just by sitting on their duffs and whining how they got nothing.  I FIGHT EVERY DAMNED DAY TO LIVE.  I am not dead yet, so why am I supposed to live as such and keep reminding everyone around me that any day, my heart, kidneys or liver might just up and quit?  Is that trying to live?

This little gem was posted as a comment to my BLOG, ‘What is all this for?’:

zamon
Email Address: aldxproject@earthlink.net
URL:
Comments:

you all have it too well. glad your all doing good with your free power
chairs and prior approvals and entourages. Youre the upper class of the
disenfranchised. What about someone like me who lives on 165 a week and
still gets denied ssi because they say a black crack head whos got 3 kids
deserves it more. People are out there raping the system, and these blogs
are the stories of only people who want free free free. lemme guess, you
have a private doc? you get every benefit under the sun? you ride our busus
for almost free.Free transportation and free metrocard? But the man sitting
next to you has AIDS for 15 years and because he tried to work and keeps
getting knocked down, the system knocks him down further,So take your prior
approval power chair and volunteer at a grassroots ASO rather than some
Corporate GMHC BS. Positive is good, but come on, there are others still
dying!!!!!



My sister for the first 2 years and then, later as I improved, spent HOURS researching all kinds of help on the Internet and phone for therapies, PML and ambulatory aides  For those without phones or Internet – go to the library!  Any decent library has computers.  It takes time and effort and for lazy-ass people to say I did nothing really makes my blood (positive and all) boil and “bunches my panties!”  Help can be out there – look!  Spend some time.  Do you need a chair – I can advise you.  I help all who ask and even suggest.  If not, then, shut up and be grateful you don’t need a wheelchair!

How dare you label any race “a crack head whos got 3 kids, deserves it more”  - such a belligerent, uneducated and racist a-hole you are! 

I am well aware of people raping and skirting the systems with numerous lies and loopholes and can only wish those I cannot turn in, get caught.  Such a very sad state of things when people take from those who truly need help or take from people in unfortunate situations.  I apologize for doing the right things to find and get what I need – a power chair, SSI, etc.

And by the way, there aren’t buses in my town – it’s very rural here.  Also since I do not live in NYC anymore (for 7 or 8 years now) – no free Metrocard here for buses and subways!

I want to direct “Zamon” to read my entire BLOG since I feel the need to answer his tirade against me somehow with some dignity (although my ranting puts my dignity in question) and please make note that I will never answer to any a-hole trying to drag me and keep me down ever again.  They only get:  **@%&&@*## YOU! from now on.

Ron

[Florida69]

SORRY, did I miss something, I am confused.  D

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[Mike2008]

I hope posting this was helpful in letting go of the anger that was thrown at you.  Try to let it pass thru you without damaging YOU.

I don't understand those people who spew hate, I just try to avoid them at all costs. We have got to focus on ourselves first.
Good Luck.

[RapidRod]

He has his own website on myspace.

[thunter34]

I believe in situations like this Matty often says something along the lines of:

"To those that matter, your acheivements are not underappreciated."


I think that vein of thought applies here.

[Ronald1958]

Yes, Mike 2008, RapidRod and thunter34, I vented and it's done - no more - sorry, but it hit below the belt when comments are blindly made.

 

[Robert]

ron.

you know you will never --- ever --- be unappreciated here.  Many of us know you too well and what you've endured.  Don't let assholes like this mess you up.  They're just trying to keep you (and the rest of us) from achieving what they can't even get close to; love of life.

robert

[anniebc]

Hi Ron

I'm glad you were able to get that off your chest..you have come too far to let this interfer with the work you are doing..both for yourself and for others, the ZAMONS of this world are not worth worrying about.

You know what it took to get you to where you are today and that's all that matters.

(((hugs)))
Jan

[ndrew]

Anyone with such a heroic effort in the face of such adversity (such as yourself) is #1 inspiration in my book.

Thank you,
Drew

[Ronald1958]

hugs to Robert, anniebc and ndrew!  I know, I know - I shouldn't let jerks get to me, but today...well....I had enough and had to vent to you all I guess.

Ron

[J.R.E.]

Hello Ron,

I have never really had any personal conversation with you, but I have always tried to get to read your blogs, because you are, one of my "HERO'S" around here. I truly admire your guts, your drive, and as they say  your "intestinal fortitude" !! Be strong, stay strong, you are a survivor !


All The Best------Ray

[rkeat25]

Hi Ron - There are alwasy goign to be people like this that try to bring you down.  I think that whatever issues this person is dealing with clearly has nothing to do with you or your situation - mostly likely they are just projecting.

I have noticed something - a divide if you will.  It seems that there are two schools of thought forming among many of us who are poz.  First, it's people in my catagory who were diagnosed in the last 10 years - most of us as the result of regular testing and therefor caught it early on and have been able to manage things with proper testing examinations and medications when necessary.  For many of us in this group, we have been able to save off the dire effects of single digit CD4 cell counts and OIs and all of the other consequences of a failed immune system.  We are able to manage HIV and lead relatively normal lives with working, ect.

There's another group that many in the former group tend to not completely understand.  This group consists of members who have been infected prior to HAART - found out about their status as the result of an OI or at some other point later stage in the infection.  Have suffered through years of failed treatments, side effects, opportunistic infections, and the phsycial and emotion toil that having a terminal/chronic illness has on someone.  Yes, many in this group are doing well with the introduction of HAART - regaining nearly normal immune function and drastically reducing the amount of virus in the body.  But, that doesn't repair the years of damage already done.  For some, returning to work is an option.  But, for many that simply is not possible for a number of reasons.

It's so important to empathize (save the sympathy for someone else) with what someone else may be going through.  People like the one that made those terrible remarks to you are not able to see beyond their own circumstances to appreciate what someone else may be dealing with.  It's a shame really - but those words are written in ignorance and shouldn't be given any value. 

~ronnie

[Dragonette]

he may be working but he has a serious disorder and I dont need to be a psychiatrist to diagnose it.

these battles over who deserves more and who "rapes" the system are so futile and stupid anyway. If anyone rapes anyone, it's the system us and not vice versa. Instead of uniting against a common enemy he chooses to vent his anger towards the last possible target. It's a kind of Stockholm Syndrom. You are taking nothing from him. But he needs someone to blame, so you and the "crackhead" are targets, because the men with the funds are just too powfull and inaccessible. There is no argument here, he is a fuckup, you're a hero, I really cant imagine the superhuman strenght that you needed to get you here. It is inconceivable. I salute you.

[Jnm594]

you're a hero, I really can't imagine the superhuman strength that you needed to get you here. It is inconceivable. I salute you

Ditto. I don't post much but I read the forums and the blogs all the time and your experience has helped me and others tremendously. I pull up the forums when I'm working with someone newly diagnosed and use those examples of strength many, many times. Don't let him piss in your Wheaties. Throw out the bowl and pour some more! Well I guess you should rinse it first.....

Just my .02

[Ronald1958]

Thanks to all, especially Jnm594, J.R.E., rkeat25 and Dragonette!  It's nice to hear I inspire!  Thanks!

And like you say - I definitely will not pay attention to a-holes anymore, but I had to point him out so people know that there are so many idiots still out there - on both sides....

Ron   

[aupointillimite]

Hi!  I don't know you, but you've taken time to call out a douchebag publicly on his bullshit, so I like you.

I checked out his Myspace, and my God... what a pretentious pseudo-intellectual, fake decadent he is.  His profile screamed of the sort of esotericism that one aims for as an undergraduate.  To be so obviously inscure in one's thirties belies a miserable existence.

I have decided that I dislike him.

And yes... I have no idea of the sheer strength you have... what's gotten you through... but sometimes, you have to scream at assholes.  Screw dignity, and screw civilized discourse.  Some people just need to be smacked.

[aztecan]

Ron,

Until I met you and a few others here, I never knew people could survive PML.

You have shown the courage of the human spirit and the determination to turn that courage into successes and a new life.

In this world too full of sloth, mendacity and ignorance, you have been, and continue to be, an inspiration.

HUGS,

Mark

[david25luvit]

A Big Thumbs Up Ron..........
but don't let idiots like that one get anywhere near you.

Everyone's situation is different... my problem wasn't as much HIV as it was the
rare side effect from a drug that caused me to contract Steven Johnson's Syndrome
which stopped me dead in my tracks.

It took me two years to get my disability (it would have only taken a year and a half had
it not been for Hurricane Katrina that shut down the SS offices for months.)  I don't think of
my disability as a gift....I spent thirty five years working and paying into the system.
Hang in there good buddy
this is more than just a struggle to survive...this is our life and we don't have to apologize to anybody!

[redhotmuslbear]

You go, Ron!  Take the bitch to the mat, and then some!

It reads like you would make an excellent addition to the HIV planning council in your area that oversees the distribution of federal grant monies.  All of these groups are required to have a minimum participation by HIVers, and they are increasing under attack for stacking the HIVer numbers with staff of grantee organizations.  No worries about pleading for rides to meetings, either, as the ADA requires the councils to provide such accommodations for those who require them. 

Peace,
David