Jonathan's POZ Blog

In the last month and a half or so, I started a regimen of antivirals I would seriously not recommend, nor am truly eager to discuss. It’s not something I am taking for the long haul. I am taking them to avoid dying this year. Next year holds no promises, not even for the truly adherent. But I am taking my meds again, and even my friends who never mention my health have remarked at how much better I seem. I look better, I act more energetic, I require less sleep, and I have (in the words of darling British Debra) seriously “chunked out.” When you become pregnant someday, Debra, rest assured I shall return the compliment ☺

But one thing I have noticed (aside from the fact that my pants don’t fit) is that I have acquired a case of acne the likes of which I have not had since, well, ever. Not a rash, I don’t think, because it’s mainly in the traditional oily parts. Face, neck, shoulders. But yeah, I will be mentioning it to my doctor next week, after I get back from the zoo where they weigh the Hippos.

It’s cool, these dramatic differences. And I really am serious about the dramatic part. Before the meds I had a dullness to my thoughts (many people mistook it for depression. It was just apathy, disconnect,) a constant ringing in my ears, nightly exhausting sweats and fevers, and an overall lethargy of body and spirit. Stuff didn’t seem to matter. And it wasn’t my brain, my soul that was on the verge of giving up. It was the body. I had lost thirty pounds, looked gaunt and drawn, and even for me, pale.

Recovering from PCP was a great first start. But the real jump start came when I restarted a regimen that has caused the least intrusive side (unwanted) effects thus far. I am on Reyataz, Norvir, Viread, and AZ – the fuck- T. Seems that the AZT will be with me for a while, and it’s ALWAYS given me nastiness. I have been on it in every regimen since 1994. And thought he dose has gone down, the effects are unmistakable. But I felt I was starting to die, and was not ready for that yet. I have many more people to annoy, and pets to fondle, and cool-ass dinners with dry ice in the drink glasses to make.

So I decided to forego, for a change, the binary attitude towards meds. Either with em or agin’ em. Either completely adherent or don’t bother. Screw that. I decided I was willing to be sick for three or four days a week, and demanded to be healthy-ish for the remaining three or four days. That to me was and is a compromise I could make. So I did, and I am.

I have not gotten my numbers back yet. But I know they will be better. I know at least that my viral load is down. I know because I ONLY get night sweats now when I forego my regimen for a few extra days. I am holding my virus back, barely, with a whip and chain, with one hand tied behind my back. And I am wrapped in a bloody shirt from Roy Horn. It’s not a perfect solution. It’s mine. It’s three days a week bed and bathroom-ridden instead of seven. It’s three or four days of physical activity without the pounding AZT headache and the “am I about to puke or not” feeling, instead of seven. It’s saving me a bundle in toilet paper. And it’s giving me windows of activity, just enough to make me crave it. Make me take the nasty nasty pills and deal, when I have to, in order for it’s reward.

And I have zits again.

My immune system, so long distracted by the fundamentals of breathing, keeping weight on, throwing futile fevers at a rampaging virus, and forfeiting sleep, is FINALLY working it’s way down the list. The list that starts with “don’t die” and ends with “heal that paper cut.” I am down to “recognize acne.” I have no idea how FAR down the list of priorities that is, but it’s awfully far down, I imagine.

I know people will say that I am creating resistant strains. And mayhaps I am. My last genotype showed predominant wild strain. And when that’s beaten down, the emerging resistant strain might indeed take hold. But for the moment, I am doing the right thing for me. I am staying alive right now. And giving myself the chance to feel better, right now. And I am not merely enduring the unending side effects (and please believe me, having been on more regimen than I can count, I know my body… those things do not mix well with my chemistry, at all, ever). I am getting the fire back. I am getting angry about injustice, and I am feeling like I want to do something about it.

I’m starting to wan tto cause some trouble again. Not feeling like a patient, or a person with AIDS. I am becoming a person again. My brain is more alert than ever. My desires are back, from good food to sex to romance to getting out in the world. In the past, when when I WAS adherent to a drug regimen, I felt so rotten that I resented it. Sure, I required less sleep. But the downside was that I found myself depressingly awake during periods of time when I felt like total crap. Total crap should at least be slept through, if not remedied.

This regimen, mine alone, has allowed me that. I do not recommend it to anyone else. And in a year, I might be dead.

But I am not dead today. I am not sick this weekend. And I could not say the same about most weekends for the past year. Today I am energized. Today I have aspirations, if not outright hope. Today I am alive. And today really does count.

Now if you will excuse me, I have to pop some zits.

I drag Benjamin out of his silent sleep, and kiss his face. He is almost bald, the cancer having taken his fur and his finery. His skin is thin, and tender, and my touch is not necessarily gentle, considering. But he immediately puts his pointed nose and inquisitive eyes towards my face, looking for kisses, for reassurance. Looking for promises I cannot ever, ever, deliver. But I deliver them anyway, in the voice of a betraying lover. You will be okay, I promise him. You will never be too sick or too tired. There will never be a time when I have to make a terrible, final choice for you.

He plays for fifteen minutes at a time, then needs to go sleep for a spell. He explores his familiar world in my apartment, then needs to put himself back into his cage, into the private comfort of his hammock. He desires to see the world, if only to assure him that it exists, and that it needs him to explore it again. His need for wrestling, for chasing imaginary objects, to acquire treasures, seems to have diminished to nothing. What he needs now is, simply, to be reminded that there is a world that he has helped to shape, and in which he remains relevant. He explores this world, follows the tubes, finds and counts his treasures, and then goes home to sleep.

I am sad in his stead, I think. I see an aged, increasingly feeble creature who only wants, only ever wanted, to matter. I see him circle his world, and find comfort in that brief circumvention. I see his eyes, bright still, but not as bright as before, seeking me out for comfort, to carry him home, to kiss his muzzle.

I see my own past, and my own future. I see that instinctive need to belong, to matter, for our navel-gazing pedantry to have meant something in the grander scheme of things. I see the sweet, sad need to be loved. And I cry sometimes when I give my smart, brave pet the very thing I feel myself denied… the moment of knowing, beyond a shadow of doubt, that he is loved and needed and treasured above all others in this mundane world. That his treasures (hidden well, behind the oppressive Futon) and his thievery (also hidden, near the blinds against the windows) are secondary things. That the thing which makes him special is the face, my face, which wakes him from sleep and kisses his wet nose.

I am afraid sometimes that my own life is reduced to that. That my own face will stand upturned to am invisible cage, waiting for that most special kiss, that most warm breath, that most important gaze.

I do not get lonely. I enjoy my alone-ness. But some moments. This moment. I do feel the absence of love like a discordant riff in the universe. And I wonder if it’s not, if I am not, simply too late. Night is nearly done. Dawn approaches.

And I do not know what to do.

So I kiss my pet, my friend, my lonely soul. I feel his warmth against my face. And I know what I represent to his weak soul. I feel that I am enough for him. Would that he were enough for me.

This has nothing to do with... and everything to do with HIV.

Just saying.

Last night, I took my pills.

Tonight, I am not going to.

There are things stronger than logic, stronger than fear of death, stronger even than my great love for science. Feeling like crap, and the prospect of continuing to feel like crap, without any hope for the alleviation of that prospect, is enough to make me gag whenever I take my pills. Whenever I deal with the “almost about to throw up” nausea, the foul and unpredictable diarrhea, the headache and fever, and the myriad of other fun side effects that many people insist do not happen anymore.

I’ve been accused of not having any balls. Of lacking courage. And of disrespecting the brave people who lived and died during the tumultuous early years of HIV/GRID/AIDS, and the advent of the flawed medications used to contain that virus. Anyone who knows me knows that nothing could be further from the truth.

I knew dozens of brave, doomed souls who poisoned themselves while I watched with mega-dosing of AZT monotherapy. I know the feeling of a viracept tablet as it dissolved in my mouth while I tried desperately to swallow it with water. I have stood in a room full of near strangers, wearing a suit, and shared stories about a person with whom I had been intimate, romantic.

I have stood helpless and scared, next to a motionless figure in a bed, while a shell-shocked conglomeration of friends and family made frantic funeral arrangements. I have taken a hand, and felt a gentle but unmistakable grip in return. And God/dess help me, I swear I have felt that life force drift out of my friends, into the angry green fluorescent lighting of a hospital.

I have felt the tender tremble of a universe surrendering another precious soul, I know it. I know it like I know my name.

And I have lain in a hospital bed, sleeping to the irregular rhythm of a heart monitor, awakened thrice an hour by codes outside, or periodic checkups. I know the smell of antiseptic, the slow burn of an IV left in for days at a time. I know the softness of my father’s deathbed, where I laid shivering and sweating through the worst of my PCP as my Mom, impotent and afraid, watched me sleep.

I know the sinking feeling of a zero T Cell count, and the sneaking paranoia that comes with a compromised immune system. I’ve feared sushi, feared salads, feared meat and feared additives. And one by one, as though a switch had been pulled, a part of my brain has said “screw that” and eaten them anyhow – because I would rather die free, living through joy than live, a slave to fear.

Yet fear stays with me. A companion, now. Almost, but not quite a friend.

Will I take my pills tomorrow night? I don’t know. My head still hurts, my bowels are still queasy, I still feel singularly chemically unbalanced. If I am lucky, I will sleep before dawn tomorrow, waiting until I am simply too exhausted to monitor my body for another second. And, as has happened before, I might awake to sickening surprises in my bed when I awake.

But I am not brave. And to be blunt, we all aren’t meant to be. Some of us simply were not made of that tough canvas, that burlap of courage. Some of us are simply made of lesser stuff, and frankly, I am tired - bone tired – of apologizing or explaining for my innate makeup. I am equally tired of AIDS “veterans” telling me to grow a pair, and that I should be grateful, as I am of HIV- “newbies” telling me that there ARE no problems, and that my experiences are out of date and invalid. I feel like I straddle both sometimes, subscribing to neither camp, yet an embarrassment to both.

And maybe the hint of bravery comes when I finally realize that I don’t really care.

It’s my life, and it’s my health, and my body and my disease. I have paid full retail for some amazing moments of pure intimacy with someone I thought would be my partner in life. I was naïve and I was stupid. I was also amazingly brave to make such a commitment, to take such a risk based, as all love is based, on necessarily incomplete information.

Staying alive is an act of bravery. Loving another person is an act of bravery. And sometimes, making hard and unpopular choices based on our understanding of science, the universe, our bodies, and our boundaries is also an act of bravery. In the final reckoning, I have no one to answer to but my own conscience and whatever, whoever passes for God/dess in my own decaying brain. And the choices I make tonight, I have no doubt whatsoever that they will come to visit me later. Perhaps sooner than.

I notice lately, I shy from phone conversations.

I run out of words, embarrassingly so, in the middle of a sentence.

Writing, oddly, does not cause these pauses. But in phone conversations, I will find myself suddenly bereft of the rest of the sentence. And it frightens me no end. Helpful friends prompt me, and eventually, when the silence stretches too long, they pick of the shred of conversation and try to knit it together for me. I appreciate that, but I also see it as a sign of things to come. And maybe that’s the hardest choice I will ever have to make.

Do I need to feel temporarily good, or at least unpoisoned, at the expense of my words? Is the choice finally down to that? Today, I have no answer. Except that I have felt bad for over a week now, and I am tired of it. So for the next day, maybe more, I will not ingest chemicals that make me sick. I can do that, at least. I can take a few words and use them still. And I can use them in a body with only the remnants of a headache, only the memories of night sweats.

Sometimes our greatest act of bravery is to simply keep breathing, chucking things we once held dear out of the hot air balloon of our lives, struggling for another few feet of altitude above an angry and violent ocean.

That might not be brave. But it’s brave enough.

Brett and Charles, thanks

So this weekend I find out that yet another childhood icon had died. Brett Somers, the ex-but not ex-wife of Jack Klugman and erstwhile Match Game panelist has died at age 83. After a long battle with stomach cancer, along with colon cancer. Charles Nelson Reilly died in May, after a brief battle with pneumonia.

I think about them, and mourn them WAY beyond their kitch personas. Because they were creatures who lived their lives in the public arena, who did so without apology and without press agents making sense or sensibility out of their every move. The smoked. Drank. Lived lives of bohemia and rhapsody, and did so under their own governership. Under the masts of their own sails. In a time when you COULD do those things, and have yellow teeth and fractured smiles to show for it.

I envy these guys, their lives, their freedom and their bravery. I envy their ability to flaunt the network censors and to live lives that might have gone scandalized in todays press- Except that they were as open about themselves as performers COULD be. They were who they were, and they aspired to live up to their personas.

These are not just people I wil miss as a triva answer on a game show. Thee are parts of my childhood, my young adulthood. These are real and relevant parts of a world that, sadly, has fallen into disrepair. A world in which Carol Burnett and Jim Neighbors can drop in for a racy answer to a generic question, and supply something both relevant and meaningful (and funny) while America laughs, and waits.

I miss the America that waits for that answer, that does not immediately think of the raciest, raunchiest reply. I miss the America that thinks, then replies, with tongue in cheek and answers with a double-entrendre. I miss the world in which we are “supposed” to take the higher ground, and then don’t. I am not fond of the country which eshews all semblence of civility in favor of the cheap laugh. There are mych funnier moments to be found in the sidestepping and backwards-tossing of lewdness. There are better times, if we choose to partake of them.

I miss these folks. For their Bohemian lifestyles and individualized moments, they were representatives of a civilization long past. One to which I still aspire, though I understand I shall never again partake of, in my lifetime.

Not without Gene Rayburn and that long, pointy mike. Long live them both, in the annals of Youtube.

And in my memory.

Current T Cell count – negligible
Current Viral Load – Lottery winning
Current mood – Cool with that

So I’m at the Party Store, browsing. I do this a lot, wander through places like that, planning, getting ideas, for dates I don’t go on, parties I do not throw, movie-driven menu events that sometimes happen. But it’s an afternoon, and it gets me outta the house.

So anyhow, Party City. Afternoon. I finish up at the themed Birthday aisle and wander to the back, where the Halloween SuperStore has taken hold. I save that for last, always. It’s my favorite part of the store. It is the cinnamon sugared icing in the very middle of my Pop Tart Day. Nibbling around the edges just makes it sweeter.

And though I am tempted to be a hobbit (again) this year, or maybe a vampire (again) or a Star Trek character (again and again) I find myself drawn to the extensive make-up aisle. And a chimp face. You know, the really GOOD ones, the ones that are latex with a hinged jaw, and hair and stuff? Looks JUST like Roddy McDowell from PLANET OF THE APES.

Which I have sort of decided I want to be for Halloween.

Not just any chimp. I want to be Cornelius. I want to be a slightly effete British actor playing the part of a chimp scientist in a 1970’s movie. That’s the thing about my costumes and characters. They are specific. Seriously, scarily specific.

So I have until next month to find fifty bucks for this latex appliance (I can’t really call it a mask, per se. I mean, it is glued to the face and painted and everything). I decide that I made the right call, proclaiming the advent of the Halloween Season early this year. Because weekend after next is the Atlanta Horrorfest (movies, scary-themed bands, and a zombie walk through downtown) and I am dragging my friend Richard along with me. The next weekend? We are thinking a corn maze (maize, heh) in North Georgia, hopefully with a group of people, and hopefully at night. The next weekend? Adam and his friends hopefully, and a haunted house.

Don’t have time to be sick. A lot of stuff to do. And it’s great to be in a place where I can look forward to things. To anything. To being Roddy McDowell.

Wandering in a dark cornfield with people I like.

Dry ice bubbling in strong drinks, while a scary movie plays.

The smell of burning pumpkin.

A season of unrelenting fire and scorching heat, giving way to the natural chill of autumn, winter. Being here for that. More than simply “here.” Being present. Being a part of it. Being. Becoming. Something more than I was six months back.

Like I told my Mom, just surviving pneumonia really does a fellow a world of good. Forget immune restoration and T Cells for a second. Just the absence of being seriously sick makes all the difference in the world. I do not for a second regret despairing when I was sick. I learned a lot from the notion of giving up. Mainly that it’s perfectly okay to do so. So long as you, at the end of the day, don’t.

Fall down three times. Get up four.

Someday I won’t get up. None of us survives this trip. But not today, I don’t think. Not when I have this chimp mask to save up for. Not when I have words in my head, that long for the page. Not when I have ideas in my head, that need the body to make them happen.

Not yet. Not yet.

Despite my bouts with sadness and depression, I will never, ever claim that it is anything less than a wonderful world. Not always well cast, and the staff is often rude and unresponsive. But the world? Worth the inconveniences.

I watched a science program tonight on public television. About black holes, gravity, and the gentle, constant warp of space and time and reality in which we spend our existence. And I know that there are, to quote Stephen King, other worlds than this.

We are standing on a planet which might well be a sub-molecular structure, sitting in an atom we call a universe, which is itself a part of a cell in a blade of grass in a parking lot. We are part of a universe impossible to comprehend. That’s scary, and also reassuring.

With so much not to know, it is good to know the few things we do.

I know there will always be a cool side of the pillow. But I also know it’s up to me to turn that pillow over and find it. I know I can find love again, if only I can stop hiding from it with such passion. I know there are no smells on this planet better than the perfume of my mother when we hug, or the musky muzzle of a pet longing for affection.

I know I want to be a chimp for Halloween.

People suck. And I say that because, as people, I suck. Tonight anyhow

So I waited until 1:30 for the guy to call. I spent yet another weekend waiting for a call that did not come. And I spent another weekend listening to music, playing with my ferrets, making the best of a wonderful…. But incomplete life.

I am better than this. Than that. I know it. And finally, after many months, I have the physical strength to realize it.

I should have gone out tonight, gone somewhere, anywhere, nowhere. I should have taken the keys and the car and driven to the edges of my knowledge. I should have made brave, bold gestures to an uncaring world. I should have danced in a club with some beautiful stranger, worrying only at the end of the night of the complications of disclosure and rejection. But instead, those complicated discussions weighed too heavily on me to let me out of the house, and a half-made plan sat me squarely into my chair tonight, like most nights, waiting for a phone call that does not come. Waiting for someone else’s life to filter down until I am on the list of things to do.

I feel that I need more than that. Better.

I hope that this newfound energy is a hint that in the weeks and months to come, I will not be heading futilely towards my own personal Zanarkand. But that I will, out of frustration and pride, be making my own destiny. I am better than this, another weekend sitting and waiting on a phone that does not ring. On gestures not brought to fruition. On moments I deserve, still, yet have not availed themselves.

I am more than the sum of my parts… but even if I am only that, I am still worth knowing. I need to get the hell out of the house.

Allergies be damned.

So a combination of offhanded drug therapy, combined with a Benadryl for allergies and a whole Klonopin (I usually take half) for this lingering unease I can't seem to shake made their way through my bloodstream tonight. I played three rounds of my Heroes of Might and Magic III in bed, before the armies and wizards began to swarm from the screen, and my fingers itched.

I placed the laptop beside the bed, and slipped into exhausted sleep.

I am with my family, picking out caskets for my Father. Dad has been gone less than six hours, and no one has slept. We are shepherded into a warehouse of grief, where coffins of every size, shape, and material compete for attention. Metal ones, wooden ones, plain, embroidered. A huge, multicolored Jesus Face on one promises to gaze lovingly - or maybe accusingly- for all eternity, centimeters from the stiffened face of the departed.

Great idea, these showcases, especially for those who have not made it this far into the realm of “final arrangements.” They are all hideously expensive. Even the ones that are simply hideous. For reasons I can’t understand, Mom gravitates towards a blue metallic one in the far corner, with plush satin sheeting and a comfy pillow.

I do not point out that, whilst we were choosing Dad’s comfortable resting place, undertakers were forcing heavy gauge wire through his lower palate, and tying his jaw together. Suplergluing his eyes. Collecting blood as it pours from all orifices, replaced by something new and sparkly and tinted pink. This box had an innerspring, and no one wanted Dad to get a backache. I tag along, marveling at a level of surrealism I thought only existed in David Lynch films.

She likes it, the blue one. By “likes,” I mean she wept most openly over it.

Light blue satin lines it. Embroidered on the lid is a simple stencil of three birds flying in formation. A fourth bird had broken from the flock, and was flying in another direction. The message at the bottom was, simply, “…Going Home.”

Birds are flocking animals. They have an uncanny ability to find home. If a bird is breaking away from the flock and going somewhere else, well, that bird might be going to an awful lot of places.

Home is not one of them.

I opt not to share this Discovery Channel moment with my distraught family. Sometimes I think thoughts that are sort of funny, except that my heart is broken at the time.

And it hits me why Mom likes that casket so much. ”Likes” being a relative term.

It is the exact shade of blue as the Oldsmobile that Dad drove to work all those years. The thing she used to walk him to in the early morning chill, briefcase and neatly folded jacket on his arm. The thing she used to watch for from the front porch, dinner and hungry children waiting for it’s return at the end of a long day.

I remember my Mom's face, shroued by the thin sheer curtains in the Living Room, parting them to look down the driveway, looking for his car to pull in so that she could put the dinner rolls into the oven. You can't put the rolls into the oven before the car pulls in. They'll burn.

It is the steely conservative color of routine, of a necessary goodbye and an eager return. It is the required parting, and the anticipated return. It is the steady blue of the Aqua Velva dad always wore, without exception and without fail. It is all things blue, and reliable, and she is used to seeing him go in that.

Of course, it is some unconscionable price. A price Mom pays without a pause, tearing the check from her book of checks and handing it over to the carefully compassionate older man who grimly smiles at her. As if apologetic to take her money, the most distasteful part of his day.

I watch the exchange, and imagine at least seven things that were FAR more distasteful, going on in the sterile rooms beneath us. The rooms not decorated with antique furniture, with classical music playing in the background.

Yet he manages to take the money, brave soul. And we wait for the Family Viewing, sitting there in the “parlor” with our good clothes on, uncomfortable in Victorian chairs. I could have used a lemonade. We wait for Dad.

I wake up, gladly, sadly.

That’s more or less how it went down, and lucid though the dream was, I could not alter a single course of events. All roads led me to that wooden chair with the floral print, waiting in a carefully arranged and immaculate simulacrum of a home for my father’s corpse. All things there furnished to provide the semblance of color, the illusion of life. But all just missing the mark.

I pass through those moments again some nights. I think it’s the Benadryl. And I wake up, alone, usually soaked to the skin, clinging to a body pillow as though it were a life preserver. I lay there in the dark, waiting for the world to right itself. Waiting for that feeling of safety and relevance to kick in.

Sometimes it takes hours and hours and hours.