A Letter To My Readers - Saturday, July 9, 2011

Whenever a blogger has technical difficulties with their blog, I have no idea if it's politcally correct or not to let their readers know; but, being the fairly outspoken individual that I am, I believe in having the cards totally up on the table at all times. With that being said, since the 1st week of May, I have been having major technical problems with Luctor Et Emergo but didnt realize just how bad these problems were until a dear friend brought them to my attention earlier this morning. Point blank, I currently have no way of knowing who's reading my blog and who's not because my readership numbers are no longer being recorded accurately. Is this concern vanity on my part? Hell no, when you're a writer and you have a certain audience you are trying to reach, you actually need to make 100% certain that you are doing your best to reach that particular audience at all times. Without that, it's sorta like flying solo without a co-pilot and dont let any writer out there fool you - the relationship we share with our reading audience is not only essential to us writers, but it's damn near crucial.

In addition to the aformentioned problem, when people read my blog and then click on "Like" on the main blogsite, www.hivspice.posterous.com, not only is that NOT showing up after they do so, but when they go to repost my blog entries, nothing is happening with that either. Nada. Zilch.

Now I've already written to Posterous.com, TWICE and they keep telling me "Well, as long as your blog is posting to YOUR homepage, there is no problem." Well, Posterous.com is totally full of shit because not only is there a problem but there's more than one problem. At first I thought it was my lack of total computer savy-ness but nothing could be further from the truth. It has nothing to do with me period. It's Posterous.com that has the problem and I am literally so sick-n-tired of their bullshit, as well as the many folks who tell me that Posterous.com is the most wonderful blogsite in the world. Oh really? If that were the case, then why the fuck isnt your blog listed here too then? I mean, damn, this Posterous crap is getting beyond absurd, I mean it.

How do I solve all of this? I dunno but I'm working on it. But one thing I do know for sure is this - my days of promoting Posterous.com are over. Finis. And for those of you out there who are considering beginning your own blogs, please, do yourselves a favor, DO NOT come to Posterous.com because the stress and frustration of this website CONSTANTLY, and literally, breaking down, is not worth it. It's just not worth it, especially for folks like me who have what can be considered a medium to good-sized blog. For the folks who have daily readership in the thousands, it's notta issue, but for little guys like myself, these kinds of technical problems can spell out the death-knells for many-a blog.

I'm so majorly hocked off at Posterous.com right now. I love to write, love it with all my heart; but, there are some nights when I get home from work so goddamn tired, to the point where my eyelids feel like they are singeing the hell outta themselves, but I still go ahead and re-proof my entries and get them published before my bedtime, only to find out that Posterous.com isnt doing their part of the job when all is said-n-done. That really rubs my rhubarb the wrong way. Maybe it's kinda redundant for me to even be writing this to my readers right now cause thanks to Posterous, it's not like y'all are gonna see it, ya know? One more suggestion before I close this piece and bring it in for a landing.

If you're gonna starta blog, try to do your blog on a website that shares the same theme as your blog. Take this blog, Luctor Et Emergo, as an example. Even though I am an Hiv'er who writes about Hiv & AIDS on a regular basis, this blog is not exclusive to those subjects only. I also write about a wide range of subjects, including my own personal experiences, but regardless, what I shoulda done is gone over to several or more of the Hiv'er/AIDS websites and see which ones woulda been interested in carrying my blog. Oops, that's right, I almost forgot, I already tried that. NOT ONE of them would carry Luctor Et Emergo because of my anonymity. Can you friggin believe it? Yep, it's okay for ghost-writers to exist but apparently not when they are Hiv+. Eh, face it folks, it has nothing to do with my abilities as a writer, or my technical skills on computers, I basically have some of the most shittiest luck at times.

You know what's gonna be the funny, ironic part about all of this? If a simple explanation to it all shows up. But, after 2 months I still refuse to hold my breath on that one. Thanks for listening and as always, thanks for reading - at least to those of you this is actually getting through to...lol.

Posted via email from Luctor Et Emergo

Post-Cancer Hair - Friday, July 8, 2011

There really is no other more appropriate title for this piece than that because in the last month or so, I've been encountering a tremendous amount of people online who have either been recently diagnosed, or are currently battling this-or-that kinda cancer and in the majority of the discussions that I've been a part of, one of Top 10 questions is "Well, how will it affect my body, including my hair?" Like with every disease out there, each person's body is gonna react differently towards such treatments as chemo and/or radiation. Sure, you'll find similiarities in people's experiences but the way any given treatment option affects another person's body may be different for another person who is using the same identical treatment option, it all depends. 

Such is the case when it comes to the subject of the hair on your head, as well as on the rest of your body. The age-old myth that everyone who goes through chemotherapy automatically loses their hair is just that, a myth. True, there are folks out there who this may happen to, but in most cases you either lose hair only in this-or-that area or in some rare cases, none at all. I personally never went through radiation for my testicular cancer, only surgery and chemotherapy (3 cycles), so in discussing this subject of hair loss, please note that I only going on my own personal experiences with chemotherapy. I'm notta oncologist, a radiologist nor a doctor, I'm justa survivor, and an extremely thankful one at that. I'd love to tell everyone out there that the same rules apply to radiation but I cannot because I never went through that, and though both of those treatment options can wreak a certain degree of havoc on the human body, they both are two totally different ballgames.

I've already written about my own experiences with testicular cancer in this blog a few times prior to this piece and the last thing any writer wants to come across as is a broken record; so, for those of you whom are not battling cancer, or have no one in your lives who is currently battling it, you may wanna skip over this piece altogether, it's up to you.

And when it comes to chemotherapy, like any other treatment method out there, not all chemo regiments are the same. I know when I went through cancer years ago I wish they woulda had all the pill-therapies they have nowadays for folks, of course depending on what kinda cancer you have, or so I've been told. 

My chemotherapy was extremely intense. Following my orchiectomy (the polite medical term for removing one of your balls), I went through 3 cycles of chemo, each cycle consisting of 5 consecutive days of chemo, followed by two weeks off, and then repeated for another 2 cycles. It was no joyride, that's for sure. Monday thru Friday, from 8 a.m. to 5 p.m. I'd go to the cancer clinic where they would hook me up to an IV and that is exactly where I would sit each day for 9 hours straight. Oh sure, they made you comfortable and you could get up to walk around if you like, like if you had to use the lew, but whatta pain in the ass it was hauling that damn IV machine around. I guess this is a bit harder for me to talk about then I previously thought, even after all these years. Okay, onto the main subject.....

Here's what I was told about hair loss via my oncologist as well as the oncology nurses, that I....may or may not lose all my hair on my head and the rest of the body....that when my hair would grow back, it would be like one or more of the following - it''d either be it's own natural color, only a darker version of it; or, it would be gray or totally white...the tecture would be totally different, very very coarse and grainy, akin to almost a straw-like feel to it...aside from the areas of where I would lose hair on my body, the only other extremely rare possibilities is that it would NOT grow back in certain areas OR my hair might fall out more than once during the intermittent chemo cycles.

Before I share with y'all what happened to my hair, there's something that needs to be pointed out here. Before you start chemo, whatever oncology team you speak with, please do not hesitate to ask to speak with the social worker who works with that team because that individual will be able to guide you on what your options are when it comes to wearing wigs, where to get your hair cut during your chemotherapy and other such questions. I was very lucky when my hair fell out (the 1st time, yeppers, I was one of those "extremely rare" cases, mine fell out twice!) because after I spoke with the social worker, I called the place where I always got my hair cut, told them my situation and they said "Glad you called us first, you came to the right place." And I did for not only were their hair stylists experienced working with cancer patients, but I found out that the same lady who cut my hair was a cancer survivor herself! 

I'll never forget the day I went in there to attempt to have my hair evened out, and how nervous I was when I took my hat off and showed her all the patches on my head where clumps of hair had gently fallen away. I started crying instantly and she looked at me right in the face and grabbed one of my hands and said "Dontcha worry Sweethaht, it's gonna be okay, it's all gonna be okay..." I'll never forget her and her adorable Boston accent! After surmising the situation we decided together it was best to simply shave off the rest of the remaining hair that was left. She was sucha nice lady and reassured me that if I had any further problems with my hair or even my scalp to give her a call and she'd get me in right away, and that if she could lick cancer, anybody could. I'll never forget her.

So here's what happened with my hair. BEFORE chemo, I wore it a coupla inches below my earlobes and it was semi-toehead in color, with a beginning hairline recession. AFTER chemo, and after it fell out twice, in-between each cycle of chemo, it changed totally. It became a dark-dishwater-blonde in color, with more of a hairline recession, and with white on the sides, not the sideburns, but the actual sides of my head turned white(!) and rather than growing out and over like normal hair, my hair doesnt do that anymore, rather it grows straight out and that's it. No lie. If I let my hair grow out continously it would look identical to announcer Don King's hair, and I am not shitting you one bit. Actually, I use to make a joke about it and told everyone to call me "Fuzzy-Pumper-Head" like that one Play-Doh toy from the early 1980's, because that's exactly what it looked like! In addition, my hair does feel somewhat coarse to me in tecture but you couldnt tell by looking at it.

I'm one of those folks who firmly believes that it's who you are in the inside that counts, not how you look on the outside; however, though some of my fellow blonde compatriots may or may not agree with the following, alotta us blondes take our hair color very seriously, we have a deep sense of pride regarding it. There's so many myths out there, like all blondes develop thinning hair and become bald by such-n-sucha age, so when my hair remained the same color it did when I was a teenager (I was 33 at the time of my cancer) up until my cancer period I thought to myself, in a very vain way "As it should be, ya sure wont get this color outta friggin bottle." And, since I've always viewed myself as a very average, simple-looking person, my hair was my trademark, probaly the only thing I was ever ever vain about in my entire life. So when I lost it, it wasnt just the process of losing my hair that upset me, it was like I was losing a part of myself, a part of how I identified with myself.

As to how I wear my hair nowadays, I wear it in an extreme crew-cut style, the best way to describe it is that it's so short that it's only one buzz level above being totally bald, because quite frankly I think it looks best that way, plus it feels best that way too, especially during these hot-n-humid seasons here in Boston. Even though I do agree with my Gram and other folks who still tell me I should be thankful to have any hair at all after all I've gone through, I gotta admit, I hate my color of hair! I really do. No offense to you dishwater blondes and dark-dishwater blondes out there, but sorry, your hair color may look great, even damn near spectacular on you, but on me? It looks like shit. Thats not just my personal opinion either - if I were to grow my hair out a bit more than I do and folks could see it with my skin-tone and eye-color, the first thing they'd notice is the obvious - damn, something just looks a bit off on that dude. Bottom line, no matter what you do or dont go through with cancer or any other disease, you gotta look the way that makes you feel best about yourself. Yeah, it really is that simple.

Regarding the rest of my body, I happened to lose body hair in very distinct places. Aside from my head, I lost all armpit hair and all...uhm...crotch-hair. I know, some of you are probaly thinking "Uh, TMI, Spice, TMI!!!" but hell, we're adults, I think y'all can handle this discussion, or so I assume...lol. 

I wasn't the least bit bothered by losing the armpit hair because quite frankly, I loved losing it there!! Oh my gawd, Ladies, I totally understand how y'all must feel about razor-burn and razor-bumps when it comes to shaving your armpits but damn, whatta wonderful feeling!! Sweet Jesus, to not ever feel sweaty and dirty in those areas during the hot summer months, for me personally, it was damn near liberating! For those of you Gals out there who piss-n-moan about shaving there, I can respect what you're saying, but damn, I think it's totally worth it! Besides, cancha all just put a dab or two of Cocoa Butter or Aloe Vera on those areas for a few minutes, before applying your deodorant, wouldnt that help with the razor-burn? Hey guys, dont cringe and laugh and say "How effeminate!" Dont knock it till you try it. As a matter of fact, I wish it was politically correct for men to shave their armpits because I'd never ever have armpit hair ever again. I still cant get over how clean and refreshing it made me feel, damn...

As for my crotch-hair, well c'mon, let's face it, they had to remove most of it anyways to perform the orchiectomy so I didnt have a problem with that hair loss area either. It all grew back in too but of course, naturally, a darker color than before! Damn dishwater blonde color...I guess for the first time in my adult life I truly understood why some people do dye their private areas. I mean, to look down there and exclaim "Whooahhh! What the hell's up with THAT color!?!" Damn, when you cant even feel good about THAT area, then you know it's sad! lol...I'm just being silly, I'm totally over it, really....for the most part.

Whew, I didnt think this piece would be this long, I was thinking along the lines of 5 to 7 paragraphs but there was alotta territory to cover. There's not much more I can say about the subject except that no matter what happens to your physical appearance as a result of chemo or any other treatment option for any given disease, always remember to love yourself no matter what AND just as with life before the cancer, it's no big deal, dont sweat it, you can always change things after you get through it all; but, in the meantime, you need to focus on overcoming any major hurdles first, okay? I'm not just here for my fellow Hiv'ers, I'm also here for you Cancer-fighters too. I mean that. It doesnt matter who or what you are, if you ever need an extra ear or extra shoulder, you just let me know. I definitely wont have all the answers but I'll always do my best to simply listen and to give you whatever strength I possibly can. Thank you for reading.

Posted via email from Luctor Et Emergo

Why I'm Happier Than Usual This Fourth - Monday, July 4, 2011

Naturally, with the health issues I contend with on a daily basis, just waking up alive every day is something to be celebratory about; however, there are a coupla extra reasons I am a bit perkier than usual on this most historical of national holidays here in the United States.

Yesteday, for the 1st time ever since I re-learned how to walk last summer, I did something I wasnt sure I could ever do again - I hiked half-way up Mt. Wachusett and I made it, I actually made it! At first I wasnt even sure I was gonna attempt it, especially since I majorly despise heat-n-humidity of any kind; but, my co-worker and her wife who both went on this quest with me explained that although heat does travel upward, when you're up on a mountain, it's like going into a totally different atmosphere and they werent kidding. As soon as they parked their car at the entrance closest to the tiny town of Princeton, Massachusetts, up we went and as we were making the trek, my co-worker reminded me a few times "We dont have to do this today" to which I thanked her for saying that but then quickly responded with "You're right, we dont have to, but I need to, at least for myself."

So we did it. I did it. And I still cant believe it but damn, it felt great to walk on those trails again, meandering through the trees and listening to all the different kinds of birds singing (Cardinals, Chickadees and White-Breatest Nuthatches are still my ultimate favorites), all the while checking to make sure no ticks decided to plant their little asses on my immune-suppressed body! Granted, as lower as the heat-n-humidity was from the base of the mountain, sweat still ran down the crack of my arse faster than Niagara Falls, as well as the rest of my body, but it was well worth it. The sense of accomplishment and the independence from the fear of not being able to do it because of my previously damaged right leg was beyond exhilarating. My next goal is to make it to the very top this coming Fall.

Yet another reason I have a bit more flounce to my stride this Fourth of July is something that makes me grin from ear to ear, for it may appear immaterial to others but for me its not because I do genuinely care about others. Last night when I was browsing through my notifications on Facebook, I rather unexpectedly (yet most surprisingly) discovered that I was extremely mistaken regarding a few people whom I previously thought did not care for me too much. In fact, quite the opposite and to this very moment, it still bowls me over. Perhaps there are more folks out there, who like myself, really do realize how ridiculous and prepubescent alotta the minute indifferences and tiny misunderstandings we all encounter online really are. 

Regardless, I've always said that if my perceptions/opinions about any human being are wrong, I''ll be the first person standing in line to admit it. There isnt anybody out there who is 100% correct 100% of the time regarding their impressions of our fellow human beings. So even though I wont name the specific individuals of whom I am speaking, I would like to say to them anyways that I'm very thankful that I was wrong about them and I hope that somehow we all will turn out to be lifelong friends. I really mean that.

Earlier today a few of my online friends asked how I was gonna celebrate the Fourth of July this year and I forgot to them that this year I'll be doing what I dont get to do every year, even though I've lived here in Boston since early, 1995 - I'm walkng down to the Esplanade to watch and listen to the Boston Pops concert at the Half-Shell. This land of ours, America, may not be the most perfect country in the world, and she may occassionally be teetering on the brink of total chaos, but she always holds on with great promise and just like the rest of us, I think she deserves a Happy Birthday celebration too. This piece will probaly autopost itself a few minutes before I return home after sitting on some crowded T-rail car with the throngs of traveling masses who also will be eager to return hometoo, so I'd like to wish all my readers and everyone out there a safe-n-happy Fourth of July celebration. And as always, thank you for reading.

Posted via email from Luctor Et Emergo

The Inspiration Mystery - Monday, June 20, 2011

Tonight I'd like to write about the place where Jack and I first met, a gay bar called The Inspiration, which at one time was located in Long Beach, California. I say "at one time" because therein lays the mystery - I cant find it. After all these years, even after all the tremendous amount of online researching and cross-referencing that I've been doing this past week, I still can't find the damn place. I've even asked various people from the Long Beach, CA area who once lived there, as well as those who currently live there, and no one has ever even heard of the place. Now look, I know I've been onna ton of different Hiv medications over the years and I've survived alotta different medical and non-medical scenarioes over the years, but I swear to everyone out there, this is notta fig-newton of my imagination - I KNOW that place existed because I can see it as clearly now in my memory banks as I did the day Jack and I first met in June, 1983.

Why do I wanna know where it is located so badly these days? Because it's a very special part of my past and the next time I am in California, I do intend to go there to visit it. I dont care how much it has changed over the years, even if it has been bulldozed (which I sincerely hope is not the case) and no longer exists, it means something to me to be able to go back there and visit the area again. The world has changed alot in the last 26 years or so, so perhaps I shouldnt get my hopes up that it even exists anymore but I sure hope it does because remembering it is one thing, but to be able to see it in person again is one sentimental journey I dont mind taking.

It's been extremely frustrating doing all the internet searching I've done so far on it because every single gay bar that is currently listed in the Long Beach, CA area doesnt even closely resemble it; and, for the few gay bars that have graciously provided a bit of a history burb on their establishments, not one of them were listed as "formerly known as The Inspiration" - not one. The next logical step would be to literally call each and every one of those gay bars on the telephone and say "Hey Sparky, was your place once known as The Inspiration?" but the problem with that is that the times I would be able to call, for Pacific Standard Time at least, would be at the height of their peak rush-evening-hours and I sincerely doubt that any bartender is gonna be interested in speaking about history at such busy time periods. Granted, it'd still be worth it to me to go that route but I dunno. I even tried looking for some form of GLTBQ historical organization in Long Beach, strictly pertaining to Long Beach, and nothing, just a few fundraiser posts and that's it.

So I think the next logical step in seeing if anyone out there just might know whatever happened to The Inspiration is for me to literally describe every detail I remember about the building and surrounding area itself and see what happens. Naturally, if I could remember the name of the street it was located on or even hadda picture of the place, there would be no need for a search in the first place; but, since that is not the case.....

The Inspiration was a one-story gay bar and if you were to stand out in front of it, whether in the parking lot or on the sidewalk, here is what you would see...the front of it was painted in what I call a grayish-beige form of brick...it had dark brown trim on the top near the roof and on the bottom of it (no basement or cellar area)...there was a curved-like sign over the entrance door of it, which was located on the left side of the building....there were 4 palm trees surrounding it - one behind the left-hand corner of the building; one behind the right-hand corner of the building; and, two on the right side of building, which also were growing next to a grayish fence, with another business located directly to the right of that.

I even remember the parking lot too (no comments please, lol)...if you were to tip over a capital letter "L" to the left and then reverse it, that's how the parking lot was shaped...near the left-side of the building, where the entrance was, was enough space for 2 rows of about 7 to 8 cars, whereas in the front, just 1 row for about 5 or 6 cars (it really wasnt that big of a bar). One other thing - if you were to stand in the parking lot in front of the building and turn your head and look over your right shoulder, you would see the bow, upper decks and 3 funnels of the QUEEN MARY but only a bit of her upper hull because that's how far away The Inspiration was located in reference to the ship itself, which I roughly estimate to be about 1 and 1/2 miles at the very most.

As for the inside of The Inspiration....when you walked in the entrance, there was the main front part of the bar counter (a little over 4 feet in length) which then curved around to the right and went the rest of the length of the room. Where the bar counter ended, there was a lone pinball machine located to the right of it. The rest of the room consisted of 2 pool tables, a small dancefloor area and I think 6 to 7 sets of small tables-n-chair sets. The atmosphere itself was very much like that of a local neighborhood bar, sorta like a smaller gay version of "Cheers" only with less drama (if you can believe that). Though it was a gay bar, it wasnt just all gay men, there were also lesbians, transgendered folks, and basically just a nice group of folks who were having a few drinks, playing a game of pool and hanging out with their friends. Oh also, there was a jukebox there, I just cant remember exactly where it was located. Naturally, my main point of interest in the entire place is where the pinball machine area was cause that's where Jack and I first met. If the place still exists I highly doubt that that old pinball machine is still around butcha know, wouldnt it be neat if it still was? Whatta hoot that would be.

Probaly the most frustrating thing I have encountered in my search thus far are the few folks who have said to me "Well, there's no bar like that in Long Beach, you were probaly in Redondo Beach." No, if I was in Redondo Beach, I woulda remembered it. In fact, I remember the friends I was with that day telling me all about Redondo Beach because when they were telling me about it we were sitting inside The Inspiration to begin with. I've thought hard about it and I've even said to myself "Well, what if you got the towns mixed up? It could happen to anyone" which I suppose is possible but I still say I woulda remembered it if we had gone there.

There you have it, the whole story behind The Inspiration Mystery. If I am wrong regarding any of my recollections of the place, then it would thrill me to no end for someone to prove me wrong for at least that way the entire matter would be solved. So if anyone out there who resided or currently resides in the Long Beach, CA area, as well as the areas nearby it, knows anything about this one little bar which I have told you about tonight, please dont hesitate to contact me regarding it because I'd really like to know whatever happened to it. Nothing will ever take away my memories of the place and why it's so special to me but like I said, it'd sure be fun to go back to it and see what it's like, if it's still there anymore. Thanks and as always, thank you for reading.

Note: This is the 1st time ever that I've tried including photographic images within any of my blog entries. I'm pretty sure I did it exactly the way I was told to but most of you are already quite aware of the fact that every time I try doing the simple online things everyone else does, something always, ALWAYS, gets totally fucked up. I pray this does work though because I would like to start incorporating visuals in every one of my blog entries from here on out. A dear friend shared with me that with the longwindedness of my writings the visual images would provide appropriate and appreciated breaks for my readers. Let's hope it works guys cause you know my friggin track record with this kinda stuff.

 

 

 

 

 

Posted via email from Luctor Et Emergo

Regarding Internet Support Groups - Tuesday, June 14, 2011

I've been debating about writing this topic for the last coupla days because many of my regular readers already know of the fairly interesting experiences I've had with internet social and/or support groups in the past; but, with it being summertime and alotta folks doing very little blog-reading, if any at all, I thought to myself "Why not? It's not like anyone's really paying attention at the moment anyways..."...So I'd like to talk more about the subject of Hiv/AIDS support groups on the internet.

Rule of thumb when it comes to their size and/or membership numbers....even though most folks automatically assume that the groups with the biggest memberships are the ones that are the best and the safest, that is not always the case, especially when you join groups measuring anywhere from the 100's on up to 1,000 to 1,500+ members because in most instances, you not only may find it difficult to keep up with the postings and/or activities of such groups, but you'll find that only about 15 to 20 members of those 1,000+ size groups are the only ones getting their issues addressed, in addition to the fact that the nucleic core of the group usually ends up revolving around those particular 15 to 20 people. Does this mean you should not join such large groups? Not by any means, it's just that may want to think about the above factors before making your decision.

As for the smaller groups, quite frankly, the smaller the group, the more personable it is and the better the response(s) when it comes to sharing posts and/or asking questions regarding whatever topics are at hand, again, just my opinion.

It's no big secret to those who know me but I'm notta huge fan of internet groups of any kind, because I find it somewhat difficult to communicate effectively within them due to the wide spectrum of viewpoints that exist on any and every topic out there. In other words, it's the type of scenario where no matter what you say, someone is gonna accuse you of being too out-spoken or opinionated and for me, I dont care too much for prepubescent mindgames to begin with. Plus, in my particular case, as I may have mentioned in previous pieces, I'm usually regarded as a "non-person" due to my anonymity when it comes to the Hiv/AIDS support groups so in that regard my being a member is almost a mute point. Sad to say but true nonetheless.

Why then, do I belong to some of these groups? Strictly due to educational/informational purposes. Our modern technologically advanced world that we live in is always constantly changing and growing so why not do oneself a favor and keep up with the latest news and developments? To me, that's just common sense. So you may notice me on the list for this-group-n-that-group but 9 times outta 10 you'll very rarely see me post or comment on anything within those groups because honestly, I'm really just there to keep up-to-date with things and thats about it. With working as much as I do and doing my internet outreach stuff (for lack of a more conclusive description) I really dont have the extra time to be living within those groups like some of the other members do anyways.

I have been thinking of leaving one of the larger Hiv/AIDS support groups of which I am a member of because quite honestly, I'm really getting majorly fed up with alotta the bullshit that takes place within it. The founder and/or administration members continously acting like they are the ultimate gods & goddesses of the Hiv/AIDS universe (yeah, right and I'm really Betty Grable's kid brother); people CONSTANTLY pissin-n-moanin about their physical woes & ailments yet due to the newer drugs of the last 10 years or so, their pain/discomfort will be over within 2 weeks and their lives will go back to normal, versus the friends I've known who have died from such ailments because there were NO DRUGS which could save their lives at the time; and, it's getting to the point where sometimes it's hard for me to literally physically stomach all the vanity and egotism that runs rampant in such large groups.

Really. I mean, you literally turn on your computer, click onto the group title on the left side of your computer screen, the group homepage pops up in front of you and then it's like you get hit by this giant wave of purely unadulerated prepubscent bullshit and you find yourself saying to the screen "Would you people just fucken calm down and get a hold of yourselves!?!?!" I, nor anyone else of my generation, woulda survived the early years of the AIDS epidemic had any of us behaved like that; in fact, had we acted that way I sincerely believe most of us would have been kicked outta groups like ACT-UP and GMHC left-n-right. Irrational behavior, arrogance, insolence - these really are not a few of my favorite things, indeed.

Another thing about some of these Hiv/AIDS support groups that really hocks me off is the quasi-religiousness of some of their members. I gotta little newsflash for those of you who use your organized religion and spiritual beliefs as your rocks of strength in those daunting and darkest hours. Hiv/AIDS has been around for 30 years now and there still is notta cure. If you wanna use your spiritual belief system as strength to help you deal with your battle against this disease, as well as a preparation for your final hours, and the like, go right ahead, it's your choice, more power to you. HOWEVER, please keep in mind that after all these years no amount of praying to God, to Yahweh, to Jehovah, to any and every supreme being(s) whom you feel are personally responsible for the welfare of the universe in which we live in has stopped the Hiv virus and/or AIDS. No, I'm not saying folks should stop praying, nor give up their spiritual beliefs or their religous practices, but when some of you within these groups look at someone who is dying from this-or-that infection, someone whose body is riddled with Kaposi's Sarcoma, someone who is so emaciated they make Karen Carpenter look like some obese-porker-straight-outta-hell and then you yell out "Oh but God is good, God is great, God is my strength in my disease!" it makes me wanna literally climb through my computer screen and slap the living shit outta some of you.

Bottom line - if you're gonna use organized religion and public prayer statements as a means to make some form of spiritual atonement before your impending death (let alone what you personally perceive as your impending death), hey, that's up to you; but, if you're gonna use either or both of those things as a justification for thinking in a negative, fatalistic manner, then please, by all means, keep it to yourself cause the rest of us have enough to deal with on our platters as it is.

I truly do not know how the average Hiv'er, or those with full-blown AIDS, can even think clearly for themselves when exposed to the flagrant absurdity of some of the larger online support groups. I already know that other members within those groups know that everything that I've said on this subject is the truth but apparently for some reason the majority of them are too fearful to admit it. Fearful. Of what, I ask? We're in an internet support group, I dont think the fate of the world rests on anything as unstable and superfluous as that. Fearful of getting kicked outta the big clique? Maybe some folks are and I feel sorry for them if that is indeed the case but for myself, I didnt tolerate that kinda crap in high-school and I'll be damned if I'm gonna be intimidated by it as an adult, a middle-aged one at that. 

There's good-n-bad in everything under the sun, so if you're thinking of joining any type of internet group, whether it's an Hiv/AIDS support group or not, the choice is yours but please, give it some thought before doing so. Remember, just as in high school, if it means having to sacrifice your integrity, your common sense, your self-worth, then you have to ask yourself, is it really worth it all? I dont think so but like I said, to each his own. Thank you for reading.

Note: As I go to post this before I turn in for the night in the next few minutes, I must admit that at first I was gonna delete this entire post because I already know it's not gonna go over too well with some folks out there, particularly those who belong to some of the larger Hiv/AIDS support groups out there. But then, only several minutes ago, I visited one of those groups and an administrator was giving a referendum to some group members like some Third Reich dictator, and I thought to myself "What the fuck is this? Some whacked out version of Auschwitz on the internet??" I don't regret writing, nor posting, this piece and if nobody out there likes it, then they can just bend down and kiss my sweet American ass. Enough said. G'night everyone.

Posted via email from Luctor Et Emergo

On Hiv/AIDS Activism, Mainstream and On The Internet - Friday, June 10, 2011

In the original piece I wrote on the 30th Anniversary of the AIDS Epidemic, the very same piece which was accidentally deleted, one of the subject areas I covered was what I personally think is wrong with the modern Hiv/AIDS activism front and while looking back in retrospect, I came to the realization that what I find wrong on that front is very similiar to what I find wrong with the numerous Hiv/AIDS support groups which are cropping up left-n-right all over the internet - how the activists who are active in both areas (or even a combination of the two) portray, as well as misrepresent, both themselves and the rest of us.

The certain degree of disdain I have for some of my fellow Hiv/AIDS activists is nothing new to those who follow this blog regularly. Although I have more than just one bone to pick with my fellow activists I'd have to the say the biggest point of contention between them and myself is that I dont like how some of them are putting their own personal agendas above the issue that is suppose to unite us all together in the first place - Hiv/AIDS. I dont like how some of them act like it's much more important to attend this-or-that gala event and be present for this-or-that photographic opportunity versus securing things like more funding for the ADAP waiting lists and further medical research. The irony regarding all of this is that they actually think that no one else notices their behavior, yet the government officals who they seek financial backing from, as well as the major drug companies and anyone else with even the most average eyesight and intelligence can very clearly see that for some activists out there these medical conferences are nothing more than just another social networking opportunity. Then on top of that, there are those folks who have the audacity to wonder "Gee, why are the various states cutting out ADAP?" Well, I'm no rocket scientist but do you think that maybe it's because those who are in a position to help us arent taking those who are suppose to be fighting for us as seriously as they could be?

When any activists behave in the aforementioned manner their portrayal of themselves creates a ripple effect that trickles down and reflects on the rest of us because in essence, they are sending out a very loud, red-flagging, mixed message to the rest of the outside world that "Hey, we're here but since all our friends are here too and you cant tell by our physical appearance that some of us have been battling this disease for the last 15 to 20 years, eh, don't worry about AIDS because we're really just here for the social experience of it all anyways." Really? Hmm, I thought activism was originally intended to make the world a better place for everyone, not just a select few? 

This then ties into yet another factor of why I dont think the Hiv/AIDS activists of today are doing their jobs as effectively as they could be - lack of honest representation. Have any of you ever thought that maybe one of the reasons we're not getting taken more seriously by the powers that be is because the majority of those activists currently soaking up the rays of the public limelight simply dont look sick enough to warrant government funding? Yes, I agree, that line of rationale sounds borderline preposterous in the sense that no government should judge how well or unwell its citizens are due to their physical appearance; however, my point is a valid one. Almost every one of you out there on the frontlines who have attended many-a medical conferences and meetings nationwide appear to take excellent physical care of yourselves and hey, that's great, hopefully your life expectancies will be lengthened because of it; but, here's the kicker of that all - if none of us shows the government, as well as the rest of the world, how sick alotta us really are as well as how close to death alotta us really are, how can any of us expect them to take us 100% seriously?

I'm not saying those of us who are in extremely poor health should have blown-up posters of ourselves made and sent to every elected official across this great land of ours; but, why not occassionally present the public with honest representations of all of us versus just those who are approaching the podiums and speaking out? There were many great Hiv/AIDS activists in the early years who got out there and fought for more available and cost-effective drugs, better medical care and further medical research (Bobbi Campbell is one who always automatically comes to mind) just the way they were because they knew that the medical world, our government and the everyday folks out there needed to realize how horrible this disease really was. Their efforts were effective and guess what? There was no socializing involved whatsoever - no parties, no famous photo opportunities, nothing like that - only people fighting for what was needed for those sick and dying. Yeah, that basic, that simple. After all, isnt that all that's really needed in the first place to begin with?

Whether addressing those Hiv/AIDS activists who are part of the public mainstream or those heavily involved in the internet support groups, there really isn't much difference between the two kinds (or those who are active in both mediums) when it comes to personal agendas, misconstrued priorities and the like, because they all basically share the same identical shortcomings. However, a person may notice it more often online because some of the internet activists sound very much like broken records with their "Look at me!!! Here I am, Here I am!!! Look!!! LOOK!!!! sophomoric mentality. Yeah, it really is that bad most of the time. Actuallly, it's literally physically nauseating to deal with at times because you'll see this-or-that one hyper-spazzing all over the place and when you ask them about the issues they are suppose to represent guess what you hear? "What issue? I thought this was about me?" to which I always ALWAYS respond "You know, you're absolutely correct, pardon me." There are a few more bones I need to pick with some of these so-called activists.

Over-glorification of being Hiv+ and/or having full-blown AIDS. Allow me to make the following crystal-clear first - when it comes to sharing our thoughts and experiences with each other and helping each other along the way, especially for those of us with Hiv/AIDS, I think that's one of the most positive, crucially beneficial things that any of us can do with each other - help each other along the way. In fact, I cant think of anything more beautiful than just that. Even in regards to folks with other diseases, or those whose lives are affected by a myriad of other circumstances, nothing can be more profound than reaching out to provide help, comfort and moral support to others who have been there or who are traveling the same exact path. There is nothing wrong with this whatsoever. I have no problem with any of that.

However, what I do have a problem with are those Hiv/AIDS activists who continuously, without fail, day-in-n-day-out, like friggin clockwork, claim that being diagnosed as Hiv+ and/or having full-blown AIDS is the "greatest thing in the world that's ever happened to them!!!" because it helped them straighten their lives out, get their shit together and made them better people. Hey, maybe it has done all that for them and if that is indeed the case, I'm extremely happy for those people; however, why cant such people realize that when they jump up--n-down making such exclamations, they are also sending out the mixed message that it's perfectly okay and totally cool to become Hiv+? Once you tell that to them they automatically turn into denialists and vehemently claim "Well, we're not saying that it's okay to become Hiv+, we're just sharing our experiences and showing that you can lead perfectly normal happy lives with this disease." Yes, that is true, SOME people can lead perfectly normal happy lives with this disease; but, NOT ALL OF US. There are MILLIONS of people out there who like myself know all too well that having any type of chronic, life-threatening disease can be a major pain-in-the-ass in one way or another and to PRETEND otherwise is not only unrealistic, but let's face it, you might as well be asking the Angel of Death to do "The Hustle" with you.

There are those people who have much more fortunate medical and financial circumstances than the greater majority of us have and good for them, more power to them; but, for such people to emphatically, religiously and repeatedly claim "Well, this is how it is for us, so that's the way it is for everyone else too, there is no other way out there" and "If your experiences arent the same as ours, then we have no use for you in our little circle" well, that's very wrong to treat other people that way as well as downright whacked in the head. It's people like that that those of you who are unfamiliar with these Hiv/AIDS internet support groups need to be very careful of. Some of them are relentless at sucking you into their own little world and if you do not play their games, by their rules, they will take you to task repeatedly, without fail. They are the equivalent of what is known as "psychological vampires" because if you do not honor the hierarchy system within their groups - 1st - them; 2nd - their closest friends; 3rd - their group administrators; 4th - the Hiv virus and AIDS - they will thoroughly castigate you because in their world, it's not about Hiv/AIDS, it's about them and them only FIRST - everyone and everything else is secondary. Yet, these are the type of people we should trust the future of the Hiv/AIDS activism movement with? I'm just so damn thankful I steered clear of people like that years ago because if I hadnt, I dont think I'd be alive today to talk about it.

Although I firmly believe that we Hiv'ers can learn from each other regardless of our circumstances and other such criteria, such as how long we've been Hiv+, what are our T-cell counts and the like, yet another issue I have with some of these activists who are both mainstream and/or frequent the internet support groups are those who literally claim that just because they've been Hiv+ for up to 1 year on up, have a few extra bucks in their pockets, and associate with this-or-that public figure, the entire world should bow down and honor them as the next new wave of AIDS Gurus. Oh really, that's all it takes, heh? I think we need to do a quick reality check on that one. Take someone like me, for example....going on 22 years of being Hiv+, who has most likely experienced more medical trials and seen more death than the average Hiv'er of today, yet I'm expected to set aside all that life experience to make way for a younger, less-experienced Hiv'er and adopt the following stance,"You know, because you were born with a silver spoon in your mouth and because you had your picture taken with this-n-that person, I am just so in awe of you, please let me bow down to you, you Master-of-the-Hiv/AIDS-Universe you??" Look, I'm very openminded towards sharing thoughts, ideas and personal experiences with any other Hiv+ individuals and/or PWA's out there, regardless if they've had the disease longer or not as long as I have; but, when someone is going to demand that I give them my blessing to be as pompous, arrogant and self-righteous as much as they damn well please, based on how much their yearly income is, as well as who they do or dont know, well sorry, but this homey just doesnt play that way. If you want my focus and my respect to be on what you have to say, you have to earn it, fair-n-square. Sorry, there are no exceptions to this rule.

Finally, the issue of stigma. This is something that is nothing new to us Hiv'ers and PWA's, it is something that we have grappled with and fought against ever since day one of being diagnosed Hiv+ and/or with AIDS and I think that we need to continue to remain firm on our stance in our demands for equal respect and equal treatment like everyone else on this planet. But the thing that I feel sets us back the most on this issue, regarding some of my fellow Hiv/AIDS activists, is that some of them will literally whine and bellyache about how awful-n-cruel this-n-that form of stigma is, yet at the same exact instant they're too damn preoccupied with their own agendas to even notice the stigma taking place around them in the first place. Those of you who behave in this manner really do need to stop, take a coupla steps back and circumspect yourselves before going any further. Like I've said before, my tolerance for ignorance in the human race is lessening greater and greater with each passing year, especially when it comes to issues like that one.

I'm very glad that I've voiced my concerns-n-issues regarding my fellow Hiv/AIDS activists as well as the internet support groups for us Hiv'ers and PWA's because the issues I mentioned in this piece have been bothering me for quite some time. I dont have an easy solution to any of the concerns I wrote about today but I do know that as long as we as a collective whole are committed and united to giving our goals our best efforts one day atta time I still think we can make the world a better place for all of us, not just the select few. As for my fellow Hiv/AIDS activists, both mainstream and internet-wise, not every single one of them falls into the categories I mentioned in this piece. There are a tremendous amount of activists, from ones that have been battling Hiv a decade or so longer than me, to those who've been infected for up to1 year or more who are some of the most extraordinary, decent and loving individuals I have ever known in my entire life and I feel extremely fortunate to know them personally. In other words, I'm sending a special shout-out of "Keep up the great work!" to those in Minnesota, Nebraska, New York, Pennsylvania, and all points North, South, East and West.

As for myself as an individual, the issues I addressed in this piece are mere signaling flags that I really do need to get out there on the mainstream frontlines sooner versus later because when it comes to doing a job and getting it done right, tis far better to get off one's tuchus and do something about the situation versus sittin' on the sidelines pissin-n-moanin about other folks shortcomings and/or inadequacies. In that particular regard, I think if people would just stay focused and not lose sight of the main objectives when it comes to Hiv/AIDS activism, rather than making it all about themselves, I wouldnt have a problem with it all; but, since that is not always the case, I think there comes a time when we all must stand up and make our own stance. For myself, that time is nearing closer with each passing day. Thank you for reading.

 

Posted via email from Luctor Et Emergo

My Thoughts: The 30th Anniversary of the AIDS Epidemic - Sunday, June 5, 2011

Last night the piece I originally wrote commemorating this extremely important date in history was accidentally deleted and I coulda just sat here and cried because I always try to autopost my blog entries while I'm at work on my 2nd job but several minutes before I left work late last night, in the mad rush I am usually in at the end of each work week, I obviously was too rushed and without paying attention, poof, it was gone. Thank goodness this has only happened twice to me in the history of writing this blog but still, it made me feel like sucha fool and I coulda kicked myself right square in the ass for sucha giant fumble. Yet rather than rewrite the piece, I'd like to start from scratch all over again and simply do a newer piece because quite frankly, it's been an extremely long week and I truly do not feel like putting myself through any further mental anguish on rewriting something that took a pretty large emotional toll on me to begin with. After all, it's been 30 years since this horrible disease started claiming millions of lives and when you really sit down and think about it, whether you are Hiv+ or Hiv-, whether you have full-blown AIDS or not, what the hell can you really say about it? Overwhelming? Devastating? Tragic? Unspeakable? These words alone cant make even the tiniest dent on the physical, emotional and mental devastation AIDS has wreaked on millions of human lives, including my own.

But, there is one thing that does impede the power of AIDS every single time - it's called Hope. Even in our most darkest hours of despair, as long as each and every one of us affected by this terrible disease holds onto even the tiniest kernel of Hope, there isn't a damn thing we can't overcome, let alone conquer. Not even AIDS can ever take away the love and memories of all of those who have gone on before us, they will forever exist and live on in our hearts-n-souls, which is exactly as it should be.

During the first decade of the AIDS epidemic, there was an unofficial coined phrase which became very prevalent in both the GLBTQ and Hiv/AIDS communities and it went something like this - "I've lost so many friends & family to this damned disease that I've started ripping out entire pages in my telephone/address book." That just wasnt a sentiment, for many of us it was and is a fact of life, myself included. There are very many of us out there who have personally known enough people in our lifetimes to form our very own personal NAMES Project. Literally. Yet as staggering as such numbers can be, there isnt one single one of those individuals who has ever been forgotten. There isnt a day that goes by where I dont silently recall to myself a certain smile, a particularly funny joke or a kind deed, performed by those hundreds of friends whom I sorely miss to this very day, which is why those of us who are still alive must do all that we can to help educate others about Hiv/AIDS and therefore hopefully prevent such scenarioes like I just described to you from ever ever happening again. To do all in our might that is humanly possible to make such scenarioes truly become a thing of the past, yes, that's more than just a noble goal, it is a necessary goal.

I'd like to close this piece in great honor of and with the most heartfelt reverence that I have for the 578 extremely special individuals whom I have personally known who lost their lives during the past 30 years to this catastrophic disease called AIDS. From Day One, the day that I found out I was Hiv+, I've always claimed that I dont want to ever be regarded as a number, as a statistic, but rather as a human being who tried to be the best person he could be, someone who always tried to make a difference in the lives of others and those are exactly the ways in which I remember all those who have gone on before me. Yes, it does anger the living hell out of me that even 1 of those 578 people I once knew lost their lives to AIDS, but by remembering how each and every one of them affected my life as well as played their own part in helping sustain my inner fighting strength, their spirit lives on, their memories remain alive and their lives are profound proof that each and every one of us does indeed make a positive difference in the lives of all those we connect with while on this earth. May all of us who are battling this terrible disease be around for another 30 years and/or until they find a cure, whichever comes first, though I'm hoping and praying like the dickens that the latter arrives as soon as possible. In the meantime, please, be as responsible and as healthy as you all possibly can be. Thank you for reading.

 

 

 

 

Posted via email from Luctor Et Emergo