POZ Community Forums
Main Forums => Living With HIV => Topic started by: Fisher on November 29, 2012, 08:05:38 pm
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I feel as if I am lost, deported to a foreign land, deposited dead center in the middle of nowhere, viewing a landscape that should have been my home, all along. . . but never was. Here and now, I am hoping for acceptance and community, a sense of belonging. I offer in exchange, in my vulnerability, my sincerity, my heart and my being.
While it is highly likely I sereo-converted in ’82, I am by far, in no way, whatsoever, by any means or definition, can be considered a “Long Term Survivor.” Being “tucked away” in a long term relationship, in a tiny rural town where cows outnumber people five to one, except for “on TV and in magazines,” I never even ever knew another person with AIDS, less ever felt in my heart the crushing loss of a friend passing, or a dearest one leaving my life, leaving my world. I never had to, without any choice at all, keep my sanity, keep myself alive, keep my life together through all the chaos and calamity, the frustration, the pain, the anger, the losses. . . during the ravaging history of the epidemic. Except for the empty “numbers” I post, I have none of the wisdom, experiences, or strengths I sense in the Long Term Survivors I read here.
And, except for (once again) being scared shitless during the early days of realizing my new vulnerability to HIV, starting meds for the first time, I also cannot camp out, define myself, find my identity with individuals newly or recently infected. I am not a newbie, either.
But I am hoping I will be accepted. I hope to find community here.
Given my life circumstances, though, in my own way, I always tried to do my best, all along, going through all sorts of hoops and pits and downfalls, making myself available for vaccine research. I do have lots of knowledge and experience there.
Sadly though, I deluded myself, thinking I was “special or somewhat unique,” thinking that my contribution in making myself available for research was “enough to do” in regards to my personal responsibility in playing my part for “our cause.” I always prided myself in what I always told myself was “playing a small, tiny part in the ending of this nightmare for all of us.” But, while doing that, deluding myself, sadly, I played almost no part in activism, no role in politics or rallies, no being “present and public” like most everyone else.
I have guilt about that, as if I let us all of us down.
But I am here now. I have many talents and resources, a bizarre sense of humor, and of course, Felecia, my evil twin sister inside me, just waiting for an opportunity to get out from the constraints of my otherwise quiet and reserved personality, act up and act out!
I hope you will accept me and part of this community. In Maine there are currently no support groups in any of the four cities, ways I’ve found yet to meet others infected. That is why I have been so active in posts here. Currently, my only means for a sense of support and belonging.
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Welcome to the forums. Your AIDS journey is yours and nothing to be ashamed about. The majority of people live their lives with HIV without being activists or politically active. Heck, most people live their lives that way. It's nothing to be ashamed about.
I'm glad you found the forums because you sound like you have a lot to offer. Enjoy.
p.s. I love Maine.
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Well , now your ready for your close up Norma ;) . seriously , welcome to the forums .
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Hey Fisher; I think Daschshund said it very well - your journey is yours and nothing to be ashamed of. As a relatively new pozzie who has isolated myself because I am not ready to disclose - I know that I too am looking for community here. With a heartfelt post like that, I think this community is lucky to have you.
JM
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Welcome Fisher! You'll fit in jsut fine here. You seem like a really interesting guy. There are a few on here who have evil twin sisters in side them ;D
My cousin lives in Maine, Newburgh to be exact. SHe and her Wife have a little farm. I love Maine and get up there every 2 or 3 years (matter of fact Ill probably go again in the spring)
Again, welcome aboard!
-WIll
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Hi Fisher,
Everyone does their part their own way. There shouldn't be any comparison or judgement as to who does more or who's more important. Support should be unconditional and equal to everyone and to every situation. If it's not, that's not a true support.
I was diagnosed in March 2011 and I'm not on meds and plan to stay this way as long as I can. Would love to hear your experience.
I went to Kennebunkport a few years ago. It was beautiful there.
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Welcome Fisher!
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ANM
The short and long of my story is that I accidentally found out I was positive by taking a send in/call in HIV test, at a “last thing to rule out” HIV as a cause of irritable bowel syndrome. Got the surprise of my life.
Made me crazy and scared shitless a long, long time ago. Got my first test results. Learned how to use the Internet and found out there was something “very wrong,” actually “very right” with my numbers. This made me twice as crazy, somehow thinking I was “spared” or “immune” or “special” to the disease. Monogamous partner and I should have been very sick when I found out. He ended up being negative (then leaving for is first love of his life, his sister’s husband). Located ancient medical records and by special circumstance got a likely time of infection if intial infection, coming back from a “business trip” to Los Angeles. Got in touch with researchers as Mass General. Then later NIH. I think my value and use to research at NIH has just ended.
Recently, for no particular reason, my immune system lost control of the virus and viral load when over 100,000, rather than its usual 2,000 or so, CD4+ dropping substantially. Scared shitless and crazy, once again. Recently started meds, Atripla, and in several weeks the virus went down to 1,200. Hoping for UD and a CD4+ rise again soon.
My “resistance collapse” brought me “home” and down to Earth in my similarity and heritage with all infected, out of my delusion and stupidity. Seeking support and to know others who are positive. Still in a small town, and not even support groups in the cities up here in Maine.
Although likely infected for almost 28-29 years, I do not have the experiences, I guess by “good fortune,” of what most have LTS have had to work through and overcome all along. Never sick. Never knew a friend or lover who died.
At the same time, I am not new to infection and HIV, although I suspect what I’ve experienced the last few months is very similar to someone newly infected. The acceptance issue, being in a small community and knowing no one infected with HIV, feeling a bit guilty, not doing anything but participating in research all these years. No marches in cities. No political actions. A bit guilty, not owning up to my mutually shared responsibility or concern all these years.
Here now. Not sure what’s coming next. But ready for it.
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Don't sell yourself short. I'm sure the years of participating in research was invaluable to the cause.
Of course if you really want to fit in around here you need to dish the dirt on your beau leaving you for his sister's husband. We're much more interested in that juicy tid-bit than stupid ol' AIDS stuff. ;D
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Ya! You right! But I never did make it unto the Jerry Springer show. So no juicy tidbits to discuss. He went back to New Orleans and they only lasted back togther for about month. Lesson: Don't drag a Southerner back to backwoods Maine till you meet the family. . . first.
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Lesson: Don't drag a Southerner back to backwoods Maine till you meet the family. . . first.
Truer words are rarely spoken.
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Hunny chile, you are a welcome addition to these forums. I can tell you're going to fit right in among us AIDSy queens :)