I Remember…

I remember every tear, every minute of howling despair, every hour of rage, frustration and hopelessness. I remember the name and face of everyone I lost. The years I spent working my pumps till my toes would bleed to raise money for hospice and outreach projects. Then progress came – not a cure, but treatment to manage the living hell. Things got better, at least a little. Then the combination therapies and things got a little better still. And I started to hope. And then I saw what I feared most – that the young wanted to push it all into the darkness of history. Thinking as we once did, that they were 10 feet tall and bullet-proof.
And the monster came back out of the shadows… and again, the cycle repeated. Now so many live a dual mindset to HIV/AIDS – part of them accepts that the disease is a fact of life, something that will never go away… but they prefer not to think about it, nor confront the behaviors that keep the plague going. Another part of them refuses the disease, and rejects those stricken by it no matter how healthy they are otherwise. They live in denial, squeezing their eyes shut tight, putting their fingers in their ears, and shout the latest Gaga trype to drown the voice of those of us who do not want them to endure this hell.
We’ve endured enough of it for generations to come, yet we do not want your pity. We do not want your empty platitudes, nor hollow memes. We want you to learn from our torment, our mistakes, our losses. Learn, arm yourselves, and fight beside us. For 30+ years I have fought, the last 25 years as a positive person and long-term survivor. I do not want your tears, nor your anger, your empty praise nor your well-meaning but missing-the-point “respect.” All I want is for you to take my hand, stand beside me and make this the last generation to bear this burden.
Survivors of the 80’s AIDS Crisis

30+ Years In…

… and I can’t believe we’re still having this discussion.  Over 30 states have enacted laws, in varying draconian levels, criminalizing HIV and AIDS. The following video tells the story of three people, two men and one woman, who unjustly will bear the burden of the hysteria and prejudice that gave spawn to these heinous turds laws.

With December 1st being World AIDS Day, and all the pretty words (don’t get me started!) coming from our Conciliator in Chief and Secretary of State – Mommie Dammit can not help but be dumbfounded at the gross injustice and sheer hypocrisy of these laws. I have no words for the anger I feel that these abortions of reason and justice were created in the first place, let alone that they are allowed to continue.

Isn’t it enough that HIV positive people and people with AIDS must carry the burden of your ignorance and fear? Isn’t the stigma that goes with a “positive” diagnosis crushing enough? I did not contract HIV because I was whoring around, nor did I contract it from a needle. I am host to my uninvited microscopic guests because one of those condoms you’re so hot for split during sex, and the man I was having sex with – as well as myself – had tested “negative” less than 6 months before. So many of us went around thinking we were free and clear during that era, only to horribly discover years or months later that the test was wrong.  Such is the fate of Mommie Dammit. To the best of the knowledge of the science of the early ’90’s, I’d been carrying the virus for about 3 years. Hidden away inside me were the seeds of ruin, and they kept hiding through my next 5 tests! When the unwanted guests finally decided to crash my party it ruined not only my health, but my life, my career, many of my friendships, and what was left of my relationship with a large portion of my family.

I bear the weight of the stigma, the weight of your fear and ignorance, the plethora of side-effects of my medications, and the knowledge that – in spite of my will and the best medical science – this disease will eventually kill me. Thanks to the herculean efforts of researchers and scientists the world wide that time has been extended, and I have held the inevitable at bay for nearly 22 years. Twenty two years in which I have carried your weight. Twenty two years of vomiting, pain, diarrhea, neuropathy, rashes, insomnia and lethargy. Twenty two years of being treated like a leper by the same community of Gay men that I have fought to protect for more than 30 years. Twenty two years of bureaucratic bullshit, spiraling costs, and far too few truly talented physicians and nurses. Twenty two years of watching any chance for founding and developing a relationship go spiraling down the toilet because even HIV positive men are paranoid and/or ignorant. And now WE are the criminals, placed on the same rung as pedophiles and rapists because of your ignorance and fear.  Thank you. Thank you so very fucking much. It’s a good thing the Gods gifted me with broad shoulders and an adamantium will. Without them I wouldn’t be able to carry my own burdens – let alone yours.

Vitamin D and Counting My T’s…

I’ve just come home from a glorious visit with my HIV specialist at Truman Medical Center. After yet another episode of my virus deciding it didn’t like my meds, so it was time to mutate and land my ass in the hospital back in February of this year, my viral load went up to over 19K and my T-cells tanked to 7. No, that’s not a typo – 7. Now, after 9 months on the new med regimen, the viral load has dropped to 90 and the CD3 count has gone up to over 1,400!!! PARTY TIME! Or at least I would, if I weren’t so pooped.

I’ve been running my silly ass ragged over the past two weeks preparing to start my new job, and between those hoops and “winterizing” the house about all the “party” I’m up for is to sit here in the Throne Room and wheeze “yippee!” Others, apparently, have been having all the fun for me.

Mark, over at My Fabulous Disease, has just returned from a fabulous Caribean cruise. The 2011 HIV Cruise Retreat, accomodated on Princess Cruise Line’s Crown Princess, has come and gone for another year… and Mommie Dammit wasn’t invited. Oh, alright… so I didn’t even know a thing about it. After all, Mark lives a hop-skip-and-sashay from the dock – and Mommie Dammit is land-locked.

From the looks of his blog, and the content of the video hosted there, it was a grand party with tons of activities, seminars, and loads of Poz People making new friends. Next year I’m going, if the Gods are willing. It will be my first cruise… Not that kind of “cruise”, you tramps! On a SHIP, dammit!

Though I have to tender my sympathies to Mark – for some strange reason his doppleganger, a.k.a. Anita Mann, popped out of her cage and scared the daylights out of everybody… I’m sooooo jealous! Anita lamented that “nobody’s going to touch me with a 10-foot pole… but if you’ve got a 10-foot pole, I’ll touch it!” I hear ya, sistah. I’ve frightened off more potential ex-husbands with my pumps than Uncle Ben’s has rice.

View. Enjoy! And, by all means, haul your tuckass over to My Fabulous Disease and say howdy!

11-15-11

Sero Conversion… or why I’m a bitch about playing safe.

Let’s face it, being HIV+ can be a nightmare – developing AIDS brings a whole new level of fugly into the picture. Trust me on this, I’ve had the virus for 21 years and became “full blown” over 18 years ago. March 2012 will mark my 19th anniversary. Part of me wants to celebrate, to acknowledge that defiant core of my being that has fueled my survival all these years. Another part of me – albeit a tiny one left over from days when I didn’t own a single pair of cast iron panties – wants to sit in a quiet corner, chain smoking and staring at nothing, wondering what my uninvited microscopic guests have in store for me next. Yes my children, in spite of the fierceness, the sexy legs, and the blood-red lipstick Mommie Dammit still has some vulnerabilities… hidden someplace deep within that shriveled, Stoli-preserved (read: pickled), little black thing they claim is my heart.

From the very early Eighty’s, while I watched friends and neighbors dying from something we had no name for, I knew this was a sexually-transmitted disease. I tried to tell people and I got laughed down, drowned out, and ridiculed for being an “alarmist” – “stupid fucking drag queen” was thrown in my face more times than I can count, and I have a degree in Computer Science! Lo’ and behold!, a couple years later and the “stupid fucking drag queen” was proven right… again. Don’t take that the wrong way, children – Mommie Dammit isn’t bragging or saying “I told you so!” I say “again” in sorrow, anger, and frustration – the same as any drag queen who has worked her pumps til her toes bled taking part in an endless parade of benefits and fundraisers, and all the while watching helplessly as people I loved suffered and died. I never left the stage without saying, “I love you. Play safe.” “No latex, no lovin'” was my mantra, and I lived by it…

…and then the “inevitable” happened. I was having sex with the man I thought I was in love with – more on caretaker codependency later – and the condom split. We never even knew it until it was all over – hell, at the time we were both under the impression we were negative as it had been less than 6 months since we’d been tested. Even the results from my next 2 tests were negative! Ahhh, but you see this is the fun part… This was 1989, and false test results were all too common. Yeah. Guess who got ’em.

Fast forward to March, 1993… here we see Mommie Dammit in the emergency room, unable to breathe, sweating profusely, shaking in the gran-Mal of chills and fever,  my heart doing a doctoral thesis on “how many irregularities can you throw at the nurse in the next 10 minutes”, and my blood pressure bouncing back-and-forth between undetectable to something close to lunar orbit. Welcome to the joys of advanced Pnuemocystis Carinii Pneumonia. The doctors gave me 24 to 48 hours before they were convinced my heart would give out under the strain. Little did they know… heh! heh! heh! As my beloved grandmother used to say, the best way to get any man in my family to do something is to tell him he can’t do it. And, as usual, Gram was right. I have that particular family trait in spades. They said, “you’re going to die” and I said, “fuck you.”  Literally. I told that poor man in the clean white coat “fuck you. M D does not spell god.” And then, 2 weeks later, I left the hospital under my own power. Sixty five pounds lighter, looking like Skelator, and struggling to put one foot in front of the other – but under my own power nonetheless. Having a will of adamantium has its advantages.

I think, by now, you’re getting the point. We’ve no need to go into the diarrhea, vomiting, insomnia, lethargy, involuntary shakes, yeast infections, keratosis, cataracts, or any of the other cornucopia of “little gifts” the meds bring you. I don’t need to expound on the reason why I will twirl your intestines around a pitch-fork if you breathe the word “Sustiva” in my presence. Nor do I need to iterate the fun you can have finding a doctor who works WITH you, instead of barking orders at you like some ex-drill sargent  fresh from your local Marine boot camp. Yeah, that goes over real well with yours truly. Rather like a turd in the punch bowl. So when I do find one that’s worth keeping I hang on with both sets of claws.

And then there’s the part the AMA doesn’t tell you about… the part where you can bring a roaring party to a screeching halt and clear a room of thousands with the single mention of your HIV status. Or the part where the guy whose been slobbering after you for the past 3 hours at the local watering hole, all of a sudden he can teleport himself to the next county the minute you say, ” I have to tell you, before we go any further, I’m positive.” Then there’s the burden of all that ignorance, fear, the well-meaning but infuriating pity, and the unsolicited advice from friends and loved ones who just stumbled on the latest snake-oil on Google… so what’s the point of all this? “Tell us Mommie Dammit! Tell us, what’s the point?”… I have no fucking idea.

I just felt like dragging your sorry butts through this long winded post so I could introduce you to the Walt Disney World On Crack that is living with HIV. Or maybe I thought by giving you the Crib Notes version of my experience you might get the idea that doing stupid stuff that puts you at risk of contracting HIV is a little like messing with the pretty box in the Hellraiser movies. Personally, I don’t find Pin Head all that attractive.

This is my Zelda Rubenstein moment – this is me, playing the good Jewish mother, telling you…

On a lighter note…

I have a handful of blogs that I really enjoy – most of which I’ve listed in a previous post. In the last few days I’ve added another. The author is a man whom I’ve admired – for his writing, his wit, and now for his honesty. I’d mentioned Mark S. King in a previous post, Mea Culpa, but I didn’t really say much about his work. While he’s a leading contributor on The Bilerico Project, Mark has a fantastic blog of his own: My Fabulous Disease. This is a video blog, primarily, as well as containing some very insightful, enlightening, informative, and often hilarious writings from a mind I recognize as nearly warped as my own.

Pssst… Mark, if you’re reading this, I say this with all the love my pickled little black thingamajigger can muster. Bitches Honor!

To be honest, I only really started reading Mark’s blog on a regular basis about a week ago, though I’ve been reading his posts on Bilerico for over a year – but now I find myself becoming addicted. Mark is also HIV+, also a long-term survivor, and just as battle hardened as Mommie Dammit.  There are times when I’m reading his posts and I hear the same words coming out of my mouth, others when I think “yeah, me… X number of years ago”, still others when Mommie Dammit’s cast iron panties get all bunched up and I want to reach through the flat-screen and slap the boy upside his head. I didn’t get my name from a cereal box, ya know!

Along with documenting his experiences in the FABULOUS world of HIV and AIDS, Mark also shares his trials and triumphs as a recovering addict. Having spent 3 1/2 years in a relationship with an HIV+ alcoholic, and many more years battling my own issues with codependency, this part of Mark’s work is both inspiring and painful for me. Again, I hear my own words coming out of his mouth all too often. There are points where I’ve moved past him, and others where I find myself in perfect synchronicity.

In my previous post, Sero Conversion…, I went on a long-winded rant about the fun you can have when you’re POZ… OK, so I have a warped sense of… WHAT?!? Haven’t you learned to spot SARCASM yet???? sigh… other people’s children… Oh, alright, so it was really my heavy handed way of saying, “do as I say… or else!”

In a light-hearted, slightly over-caffeinated way Mark tried to say roughly the same thing. He chose to use the vehicle of cheerleading for the boys and girls who have remained HIV negative, instead of my vehicle of bludgeoning them with scarey stories and mental images of horror-movie monsters coming to eat them. Although Mark took a nasty bite in the shorts from some of his viewers – which I don’t get, I fail to see the “sarcasm” they’re talking about – I think it was a terrific idea, and I loved the post… even if he does wear me out just watching it. Let’s face it, Mommie Dammit is a languorous soul – think Marlene Dietrich on the fainting couch.

So, without further ado, and with Mark’s gracious expressed permission – I present to you Mark S. King’s “My Fabulous Disease” In Praise of HIV Negative Men

11-5-11