Gloom, Despair and Agony On Me

"...Deep, dark depression; excessive misery. If it weren't for bad luck, I'd have no luck at all. Gloom, despair, and agony on me."

AIDS is not over. People are still dying. And those of us not in death's throes woke up with the certainty that someone had taken a shit in our mouth. Or the new meds have turned our tongue to a wasteland of City Dump flavors. "General Malaise", the bottle says. Bullshit. Specific Malaise. Definitely, specifically MY malaise. We are so deep in Malaise, we should be Malaysian.

Last night brought a rare sober and sobering call from What's-Her-Name-In-NYC. Pneumonia. Not the killer kind, but the kind that causes your average bi-polar queen to cleave to the wrong pole. Not pretty. Having woken up with nearly every man on the island of Manhattan in her time, now she wakes up with pneumonia on a Saturday morning. If that were the direct result of being easy, we would write something catty about it. Oh, we did! Good for us. Malaise and all.

She called to report that People Are Still Dying and a certain blogger should tell people as much. We assumed she only referred to herself, which we thought to be a tad over-the-top for bacterial pneumonia - given the alternatives. Then we woke up with this atrocious taste attached to our tongue that no amount of brushing, rinsing, Mountain Dew or nutrition drink can quell. NOW we understand. Death's sure calling card is either pneumonia or a bad taste in the mouth. And more likely the latter, since it is the one affecting us. Malaise, malaise, malaise.

Mustard or Malaise? I'll have the malaise, please. Hellman's malaise,to be specific. Save the Miracle Whip for S&M Jesus. He'll be here soon.

She was right, though. People are still dying hand over fist. With medicine in their fist, usually. There are a couple dozen HIV-specific medications on the market and another half-dozen in the pipeline nearing approval (including the one we're swallowing). That Old Gang Of Mine quit dying, lived long enough to regret running up the credit cards and selling the life insurance policy for pennies on the dollar, and now are sliding back down Pharmacy Hill to the Valley Of The Shadow Of Death. Some with pneumonia. Others with a bad taste in their mouths.

In my own little circle, in my own little world, I can be whatever I want... Wait. That's a line from something. In my own little circle, 8 have died in the last few years. I don't live in San Francisco anymore, or Chicago, or any of the other places with large concentrations of HIV+ people. These are guys I met in Kansas City after moving to the area. Eight. And I wasn't collecting friends in the Intensive Care Unit.

The meds fail, whether you take them or not, for most people over time. The med combos are a finite group. That means you run out of options and end up in clinical trials praying for more life and less of a bad taste in your mouth. It means you live long enough to have a reasonably normal heart attack, but it also means that you keel over from pneumonia because your immune system is shot. Or you don't wake up because your liver went to be with the Lord in your sleep. Or your brain invites The Virus in for tea and winds up demented because the guest won't leave. Then it fucks around and tells your heart to stop beating or something demented like that.

The fat in your face wastes away, as does the fat in your arms and legs. It collects in your gut, like you have a beer fetish, or between your shoulder blades, like you just came from a costume fitting for your role as Quasi Modo in the local community theatre. Big belly, no arms, no legs, no face. A very pregnant Nicole Richie, in other words. Your ability to stand or sit or walk or lift or simply stay awake falls prey to It. You can't work. Your six-figure lifestyle suddenly morphs into life in The System. Not because you were sick of 6-figure living, but because you got too sick to live in the 6-figure world.

You wind up proving not how smart you are, but how sick you are every 6 months for the insurance company or the gals at Social Security or the State or Medicare or somebody else who would love to help lower your self-esteem if you can only prove how little you can do. They don't ask whether you shit yourself in broad daylight because of what your medicine does. They also don't ask whether you have to move from the bed to the couch to the floor every night to avoid the wet spots that once were evidence of A Good Time Had By All and now are simply the result of drenching night sweats.

You drag yourself to memorial services at an increasing pace and suddenly catch a vision of all the Aidsy folks lined up single file at a cliff. When the one at the front of the line jumps off, everybody takes one step forward. You don't know where in the line you are. You only know that the line is moving a lot faster than it used to. The new medicines aren't slowing it down, they're just letting us march in Depends, or with an oxygen mask, or with a very, very bad taste in our mouths.

President Clinton has gotten the cost to treat AIDS in Africa down to $1 a month by brow-beating the pharmaceutical industry. We don't begrudge Africans a goddamn thing, but when, pray-tell, do we make our own a priority? What's-Her-Name and I could spend our allowance on something better than co-pays if anyone thought to lower the cost to treat AIDS in the U.S. to $1 a day.

Helping the folks in Africa live is a grand gesture of kindness.

Helping the folks at home, though, would be socialism. Bastards.

A Trial Neurotic

In a grand salute to my fellow neurotics, I proved today that neurosis can trump label warnings every time.

I've had the clinical trial drug in my possession since Friday. It has instructions in 47 languages (a slight -- and I do mean slight - exaggeration). I had to wait until today to swallow the first one so that I would have the new trio of drugs that accompany it. I opened up a spreadsheet to make sure I didn't undermine the entire pharmaceutical industry by screwing up the frequency, dosage, or food instructions.

I made note of all the side-effects that should send me running to the doctor from all four medications. I also glanced over the list of 60-plus side-effects that should send me running to the nearest bathroom but don't require an office visit. Since the majority needed to be taken twice a day - with food - I made a small lunch and laid out the very colorful pills (lots of orange this time). I decided to eat half the food, pop the pills, and then finish the food - just to be overly literal. Not before food, not after food, with food. I didn't crush or chew, like the label admonished. I drank water or milk, as instructed.

I took one bite of lunch and barfed. And I hadn't yet swallowed a pill. I was having side-effects without taking the pills. I wondered if I would get the positive benefits the same way. Just read a lot, vomit, and watch my health improve. In full-blown neurotic dither, I swallowed the pills at the half-way point of the meal and watched the little clock on the computer to see how long it would take for me to have discernable side-effects - as a result of the medicine.

To pass the time, I read an online article about the clinical trial drug. Apparently, if the drug works as it's designed to, I should stay away from mosquitoes because its miracle method makes me susceptible to West Nile Virus - the one virus I haven't yet had. I live in Kansas. This is where God created mosquitoes. They're not the size of birds, like in Florida. But they bite. I buy a summer wardrobe anually that goes well with large red welts. I have always been a mosquito magnet. Now I get to invest in a full-body mosquito net that won't go with anything from last year.

I'm coming up on the one-hour mark and my head is filling with snot. That's a side-effect of at least one of the drugs. Rash, dementia, stroke, diarrhea, and loss of limbs can't be far behind. We'll keep you posted.

In the event we don't, would someone please call Pfizer and tell them another one bit the dust?

Salvaged

It seems our physician has come to the conclusion that we are now at the stage of life where "salvaging" should become a part of our conversational lexicon. Came as something of a shock, it did. But if we were honest, we'd say that it was probably a bit overdue.

Never one to lose his sense of humor in the face of grim statistics, I plan to approach my Salvage Business like everything else: Just one more thing to wake up and conquer. I've imagined my Salvage Therapy to include putting a 1963 Chevy Pickup on blocks in the front yard, having a deceased washing machine on the back porch, and a pile of flat tires in the backyard...just in case they come in handy. I had thought the salvage mentality had gone the way of BetaMax with the advent of eBay and recycling. I'm just going through the Garage Sale stage of my life, it seems.

I have a date tomorrow with a vampire - a square-bottomed lesbian who will drain me of several vials of tainted blood. We'll ship them off and see if I qualify for a new clinical trial for the latest, greatest hope of the Aidsy Set, as Randy used to call it. I've been tired for a long, long time. My current headache has lasted for 8 weeks - unabated. I've proven that no amount of Vicodin, Klonopin, Tylenol, Sudafed or Marijuana (concurrently, on at least one occasion) can keep it away. Something's been rotten in Denmark for a little while now, though I didn't mind until I started with the vomiting. That's where we draw the line.

I would rather endure amputation than hurl. Honest. Been that way since time immemorial.

It seems we've exhausted the rather lengthy list of medications that can prolong the beleaguered existence of a person in our condition - or quite nearly done so. We have now officially become a hopeful guinea pig. Hopeful, because there's not yet a guarantee that even the clinical trial is an option. Hence my Interview With The Vampire tomorrow.

We are likely to be uncharacteristically under the weather in the near future and, if history tells us anything, will be unpleasant in the extreme. New medicine does that to us - especially if it makes us hurl. While we are not prone to being maudlin or morbid, we do find refuge in a deep well of nastiness that sustains us in such moments. Who knows how many nurses have been driven from the profession by one of our many hospital stays?

It's all about expectations and predictability. You expect that you won't wake up dead in the morning. (I know that's oxymoronic, but you get my point.) You expect that today will be rather like yesterday and not bring anything shocking to your doorstep. If you'd expected it, you wouldn't have been shocked, no? You hope that your demise is predictable, slow and leaves plenty of time for tidying up around the house: ditching the worst of the porn, cleaning up enough so they don't call you a slob post-mortem, folding your underwear so they remark upon your attention to detail. You hope.

My expectations when hospitalized are that I will be treated like a lazy guest at the Hilton. I will lie there while you wait on me hand and foot (and vein). When I need something, I'll push the little button and you will scamper to me as though you'd been waiting on nothing more than my call light and my request for another ultra-mini can of Coke. Or to change the sheets I've sweat through for the third time in an hour. Or to remove the urinal from the table where I'm going to eat in a few minutes. When my expectations aren't met, I turn into a Nursing Instructor and give the short course in How To Make Your Life Bearable and Mine Unspeakably Pleasant For The Next Few Days. Just give me what I want when I want it and then go away. And smile, for Christ's sake. It's not like you're the one hooked up to the machines. You're getting paid for this and I'm going to get a bill.

I did not expect to be salvaged so soon. But here we are. It's disconcerting, to say the least. But we will continue to picnic and pretend that the big birds circling over head are simply after our tuna salad. And we will continue to laugh. We invite you to at least smile. It takes our mind off things.

Should we be lax in providing new material in the near future, don't worry. We'll either be back soon enough with something provocative and hysterical (to us, anyway) or our sister will post the nice words the newspaper says about us when it's all over. Either way...you'll have at least one more original read. Hell, we may even pre-write our obituary and post it here so we can enjoy it together.

Now that's the way things ought to work. Salvaged or not.