JKINATL2 – Jonathan’s Place

Turn around Bright eyes

I am forty three years old tomorrow

Which in and of itself is not a bigger or lessor deal than it is with anyone. Except by all that’s written in medical stone, I should not be here. Not be here to celebrate it, nor mourn the passage of so many year, waiting for a death that has yet to materialize.

Odd feelings, those. Hard to reconcile.

I remember thirteen years ago, reading the gay rags, and noting how the weekly and monthly ads and articles were squished beneath the oppressive obituaries. Hoe many weeks, many years, the obituraries overwhelmed the articles and the iteneraries by a margin of four to one. How the rags, once a vehicle of gay planning, had become a measure of loss, of collective mourning and remembrance. Things far too evolved for the twenty-something I was when I was reading the magazines. Things that hurt on levels we were not, as a culture ready nor willing to embrace as a normative. Bt we printed the, often free of charge, for years. And I read them, as a horrified outsider for the longest time, then as a participant, waiting for my turn, my free obituary. My one positive affect for having been openly gay and openy out and willing to blindly trust in an era of suspicion and regret.

I waited and waited.

And the protease inhibitors came out, and I took some. And took some more, later. And threw up for a few years, then took more. And finally waited until better drugs came out, and brought myself back from the edge of that abyss and decided to try, finally.

And now, here I am. Emotionally stunted at the age of twenty nine. Physically forty three, and probably far more aged than that, on a molecular level. And for the life of me, I do not know where to go from here.

As a gay guy, I am a powderkeg. I am a viral menace, though my viral load is thankfully minimized thanks to drugs and my adherence to same. I am a liability to relationships, though I have outlived and outlasted the last two long tern ones that seem to have been based on my own demise as a platform.

I seem to have outlived my welcome sometimes. I have certainly outlived my experiences and my ability to predict the future. I am adrift now, at an age many would label as middle, in a portion of the lake of life I cannot navigate. I simply paddle form day to day, month to month, and hope that my psyche does not fall completely apart at the shallowest eddy. I freak out when insurance has a glitch, when the doctors or pharmacies fail to deliver the consistency that I cling to like a non-swimmer clings to a life raft.

I would love to know what to do,where I really am, who I need to be, and all those other questions that seem so elementary to other folks my age.

But here I am. Still alive. Still in the struggle. And in the world of dating and relationships, still living in a powder keg and giving off sparks. And I fear for those who love me. And for my own self. And for the future, which means not only finding my paddle and compass, but racing to catch up to those my age who have gone so much further.

I sit, sometimes without the capacity for movement. And I wonder how one gets through this, wonder how someone overcomes a death sentence and turns his life around. It takes great strength, that I know. But where… and to what end? I wish to hell I knew.

Tonight, on the eve of my birthday, I sit and wonder these things, and watch music vidoes from the past to imagine myself then, full of dreams and arrogant immortality. And I try to recapture that. That innocence, that lack of knowledge, that naïve self.

Where are the touch-stones for those who survive? Where are the maps for those who simply paddled on straightward onto the abyss, without fear of death because death was all we had in front of us?

Someone tell me. Because Bonnie Tyler cannot.

I sit in the uncomfortable wicker chair, made only marginally bearable by the thick pillow in the seat. The air is bordering on the dry, enough to make my lips chapped. It is hot, though a brief snow flurry cascades outside in the dark. Mom likes to keep the temperature up, though she admits that, like me, she used to be a cold-weather person. At the commercial break, I steal a glance at the leather easy chair next to me.

Mom is old, finally. Old and not in the best of health. Her hair, neglected, is a translucent grey-white. Her face bears more than one liver spot. Her hands are weathered and withered. Her body is a shapeless series of lumps in her cranberry satin pajamas. Open carelessly at the neck, her shoulder is exposed, and with it the beginning of a single, cruel scar from her pacemaker surgery a month ago. It is red, puckered, and still angrier than I would like. And it reminds me that every moment, every heartbeat, every instant with Mom is a borrowed piece of time. And no one can tell me how long, how much time there is.

I spent the last week doing light home repair, making some calls to get Mom connected to services (someone will pick up her trash from the side of the house, as she can’t drag the fifty-gallon drums around) and generally making sure that things are not in such disrepair as to warrant attention. I have stood on ladders to change light bulbs, installed new thermometers, hand-scrubbed floors and made calls. But mainly, I have cooked for us, light snacks while we watch our requisite three hours of Will and Grace. Sat in the uncomfortable chair (or sprawled out on the floor) next to her. Been what she really needed, what she really craves, another living being in her world.

The roses I sent her for Valentines Day are dying, and every day she snips a few more buds and places them in a dish so they may dry. The rosebuds retain their yellows, their oranges, their reds. But they are dead, and Mom saves them because she loves them so.

We sat in line for over an hour so that she could apply for a passport, and get her photo taken. This I take as a commitment to some measure of continued vitality. But still I wonder if, like when my Dad was diagnosed with dreadful, incurable cancer nine years ago, I am in any position to do anything but whistle through the graveyard.

I simply do not trust myself to see the truth. I see what I want, I accept only what I absolutely must, and information means less to me, as invested as I am, than hope. Hope which steals sleep from my tired brain at night, as it is wont to dance with despair.

Mom mentions on several occasions that, when she was flatlining on the surgery table (she did so twice), she saw my father, wearing a long black coat or cloak. He was not the feeble old man who died in his bed. He was vibrant, handsome, with a big smile on his face when he saw her. He grabbed her, twirled her around as he did when they danced. Mom says that this has removed any lingering fear of death. “It’s just the next thing that happens,” she tells me. “It’s natural, and it’s painless. It’s simply the next step.”

I agree. I agree. And yet I don’t. Because her next step removes the last trace of family, the last vestiges of security and safety from my life. I agree, and there will come a time when it is the necessary next step for her. And I should celebrate that. Intellectually, I do.

Emotionally, I am a lost child, who sees a dwindling parent nearing the horizon even as he struggles to comprehend the disappearance of the other. I am scared beyond the telling of it. I have some good friends, who fight one another to take care of my ferrets while I am away. I have good friends across the country and planet, who are a Skype call or a Dungeons and Dragons login away. I know this. I am not abjectly alone. I know this. And I am grateful. I am, however, still scared to be orphaned, to be truly adrift, to be at the mercy of whatever currents guide my life.

My mother is better. She is walking around, going shopping, seeing friends, driving her car, playing bridge. She is an eighty year old with congestive heart failure and a pacemeker. She gets tired. She gets weak. She needs help sometimes. But even though the allure of a handsome man who she loves very much awaits her on the other side of the membrane. She still wants to get a passport, go on a cruise, see the world. She wants the opportunity to live just a little more, and I want to help.

Will and Grace is over. The snacks I prepared are eaten. Her very weak martini has been finished, and the dishes washed and put away. I lock the doors, turn out the lights, and meet her in the hallway between our bedrooms.

Gnight Mom, I say, and hug her impossibly small body. Her arms circle my back, and for an instant I think I feel her heart beating against mine. The smell of bath salts, fabric softener, and powder linger in the air.

I love you Mom, I say.

I love you, she replies in a voice that is tired, happy, aged and weak.

She sleeps well. I do not. But I suspect that’s simply going to be the way of things, now.

Water baby

I wrote this in August, 2008. I was in the hospital for PCP. The respiratory infection, not the drug <grin>

Thing about hospitals, they don’t tell you much about what is going on. They come in at somewhat regular intervals, swap one IV site for another, hang a fresh bag of chemicals on the rack and wait for it to start dripping into the arm, chat about pleasant things, then leave. Hard to get anyone to say if I am getting better. If I am going to get better, even. So though I had access to the outside world, I was essentially alone in the midst of a lot of activity, an object under care.

I now understand how my car feels, when left to get the brakes done.

But I had time to write. And, to be fair, to chat, to watch Xena: Warrior Princess on DVD. Also snuck in Wrath of Khan, because if I am going to die, it’s going to be with that movie fresh in my head.

But being alone with one’s thoughts is not necessarily a bad thing. Even if those thoughts are scary.

I am falling, or maybe flying. I have met the Under Toad, and he is me.

I am three years old, maybe four. Possibly only two. Swinging my chubby feet in the warm chlorinated water. Mom sits in a lounge chair, while thin strips of plastic support and mark her. Dad is off somewhere, doing whatever it is that Deacons of Methodist Churches do on these retreats. My brother, surely no more than fifteen, is diving off the board, playing to the instincts of the pretty young daughters of other Methodist Deacons.

I do not remember why I go in. Whether I simply kicked the water until the slippery rubber drew me, or whether the prettiness of the sun dancing on the impossible blue was more than I can resist. Regardless, in an instant, I am there, under that water, looking up. Looking into the eye of the universe.

The sun-dappled yellow sparkles are made hazy and white by foam and chlorine. The warter is turquoise and sky blue. Floating in it, moving in it, an arm I recognize as my own. Made indistinct by chemicals, but flying, not flailing. No sense of danger, no sense of pain, just the awe of an innocent, in a world where everything is new, and who still remembers the face of god.

Then I draw a breath, and mortality fills my lungs. That first angry, frightened gasp of air when stolen from my mother’s belly. Taken from that safe place I knew into all that was unfamiliar. It is startling every bit as much as painful. It has nothing to do with the water I am under, with the blue and white dancing swirls. I take another breath, and begin to sink.

The third breath is no longer painful, as if my young body still secretly longs for that womb. My relief is immediate, because the colors are so pretty, and I am flying, falling, sinking, surrendering to the sparkle of stardust from which I came. Hurting only for that indescribable moment when untold sparkles of stardust emerged from whatever was before, making everything in an instant.

I am closer, closer. The water is darker, is inside me. I am the water. I am the dappled blue and yellow. The bliss and joy would be unendurable, had I knowledge of true pain, of good and evil.

Then chaos, as a boy’s arm, my brother’s, pulls at me and grabs me around the waist. I am indignant, and try to recall how to use those little arms, to get back to the middle of it all, to the sparkles and the infinite. A child trying to fight and flail, But the teenager’s arms have me firm, and I am dragged from that perfection to the other side, where there is rough concrete, splashes, shouts. Anguish leaps from my mother like sizzling water leaps from burning oil.

The rest is incidental. My lungs are evacuated, my body and spirit conjoined. Trip to a hospital, medicine to prevent infection, and eventually a return home, with a proud sibling, a traumatized mother, and the distant, solid, trembling rock of my father. Back to stern lectures and warnings. To a place where we cannot dare fall, cannot dare fly. Where preserving what we are is paramount. This world, this life. More than anything, we are taught to fear that blue and white perfection, dread the inevitable return to that spark. We are taught to believe that something eternal and wondrous lies on the other side, but also taught to shrink from it with all our might, as it is darkness and the end of all we know.

I am in the hospital, waiting for the IV infusion of my eighth different drug so far in the treatment for my PCP. I can get to the bathroom on my own, sometimes without coughing my donkey bray, without gasping for breath. I can sleep for a couple of hours at a time, mainly because I am so very tired. I sip water from a Styrofoam cup, and remember again to be grateful to Richard and Adam, the two important men in my life, whose relationship I can’t sully with terms like “friend.” It hurts them so badly to see me sick. Adam and I had harsh words directly before I went to the hospital, and we need to spend some time alone together to forgive each other and bond a little more, to do our unique, familiar dance.

I sleep fitfully, anxious, interrupted by blood draws and IV medications and food served far too late in the morning, far too early at night. I sip my water, I sometimes read my book. I chat on the phone with anyone who will talk. I tell my mom I am doing fine, and listen to her struggle not to cry. She is old, and weaker than she’d like to be. Like that day forty years ago, she is unable to reach me from where she sits, and I can almost taste her frustration.

I don’t know how long I will be here, or what will happen. Time seems to have stopped for me, or sped up. I am removed from it, here. Bobbing below and above the surface of the linear. I wish I was at home. I wish I was kissing an enthusiastic ferret, or feeling Richard’s feet against my legs as we recline on the futon, watching British comedy and cheesy science fiction. I miss Adam’s ascerbic comments about the reality fashion show program, and making him laugh with my own.

Mostly I miss the blue and white water. Always in motion, always changing, consistent always only in that.

I do not know how much flailing I am doing, or flying, or falling. But this drowning, like love, seems far less beautiful than the first time. Knowledge of pain, I believe, is the real expulsion from Eden. It defines us, sometimes overtakes and petrifies us, dictates so much of who we are and what we do.

Green-tinted Avelox runs into my arm. The monitor pumps like the heartbeat of a sick old man. Breakfast is in an hour. News is on television. I am not a child, and this is not a hotel pool.

But it feels almost exactly the same.

It’s weird, reading that again. I honestly had no idea how sick I had become, slowly, over the past year or two. Just the usual, tired, feeling “off.” Then a little short of breath. Then a lot. Pneumonia can do that to a person. Glad I got the help I did. Also glad I was in a room without Tivo, which is the bane of a creative mind

I was lucky enough to have some serious HIV experts from Australia to New York to Chicago, friends and friends of friends, helping me sort things out. And yes, turns out I was right. Took the ID specialists two weeks to figure stuff out, but I ended up being spot-on all along. I take a measure of pride in that. Oh, and word to the wise: if you ever have to stay in the hospital, make sure you get c. Diff, a bacterial infection of the gut usually caused by massive antibiotics. The diarrhea is dreadful, but it gives you a private room at no extra charge. Just make sure your friends bring many, many rolls of your favorite toilet paper. Because hospitals use Scottissue brand, which is great for holiday cards and paper airplanes, but not a lot else.

Anyhow, I got better. I got on drugs that do not make my organs scream in agony. I gained back all the weight I lost. I got energy back. And I lost a lot of fear of death. Which I am not sure is a good or bad thing.

Somewhere in the middle of everything, I became convinced that this whole life, this whole existence, was an illusion in which I chose to participate. I took it seriously because that was part of the rules. But standing, however briefly, outside the playing arena, I was reminded that it was not real. Not really real, not ultimately real. There are, to quote Stephen King’s “Gunslinger,” other worlds than this.

Is that a spiritual experience? I dunno. All I know is that it’s a topic of inward conversation that still sits in the corner of my mind, waiting for me to someday pay more attention to it. And someday I will.

So now I am here, in my new home. Might be a few days before I get the photos hung up and the furniture put so that it faces the TV.

I have a blog on MYSPACE, which sometimes people read. Usually it’s a mirror from my blog at POZ. COM, but not always. But I get the impression that MYSPACE is so 2006 now. I want to be 2011.

Plus, more of my real friends are here. Having teenagers who post model photos stolen from the internet and wax rhapsodic about their binge drinking subscribe to my blog can be a little disconcerting.

Notes: I write in sometimes annoying line breaks. I am also a rotten typist.Where is the spell check? I often do this in Open Office, then import. But that sometimes leads to odd characters and squiggly things. So if I miss a typo, forgive me. Or point it out. It’s literary broccoli in my teeth, and though I might hate you for a moment, I will thank you for a lifetime.

I recently resigned from a four or so year tenure at the AIDSMEDS/POZ.COM blogging pool for a couple of reasons.

One, I was tired of trying to link all my thoughts and expressions to HIV, since that’s not every scintilla of who I am. It INFUSES a lot, but it’s like Earl Grey writing about nothing but bergamot.

Two, I was/am having real problems at the direction of the community site there, and was finding it less and less of a resource for scientific information. The guys who ran/run it were smart as whips, but not exactly great moderators in a message board. They pleased the masses, sure, and it certainly helped the numbers look good. But they forgot the axiom that most people suck, and drove away the few people from whom I had anything of real import to learn.

Needless to say, they took my resignation with “mixed emotions.” A mixture of relief and joy, I suspect.

Three, my ability to put up with/tolerate/be all sweet with people who were A) idiots B) drunk or high when posting, C) off their psychotropic meds or D) all of the above had reached an all time low. My tolerance for fools and idiots hit the ground and gave me road rash.

Four, I realized that, having had this dumb virus for fifteen years, I had outlived my role model relevance. I want to be many things in this lifetime. Viral Brontosaurus is not one of them.

Also, I think I want to write some stuff for actual folding money, something POZ toyed with, but abandoned rather quickly.  Plus, I smell in the recession-rife air the stink of a magazine that might not be doing so well, outside of a pharmaceutical catalogue. And for the life of me, all my time on Kaletra, I never ONCE climbed a mountain with a bro in REI khaki shorts.

The makers of Kaletra are ignoring a HUGE market in overweight forty something people who are currently stocking up on colon cleansers. I would not touch the junk again with a ten foot plunger

So I am looking for other pastures, as an occasional outlet and stuff. And to further procrastinate when people (and yes they exist, and not only in my head) start telling me its time to write the damned book already.

This is an idea. This blog thing, is anyone reads it or cares.  I will post the last four or five of my old stuff here, to see if anyone likes it or reads it. If so, cool. If not, well, there ya go. I am not sure how this works, if subsequent posts will come first, whether I can set the time and date to keep things in some sort of chronological order, or if I will use the copy paste function until my fingers bleed. But hey, its all a learning curve. I will try not to drive too fast without the headlights on.

Thanks for getting this far. I owe you a cookie. Or martini. Or a martini with a cookie floating on top of it. Whatever floats your Oreo.

so here are some if the blogs that did not suck, from early to late.

Long story short, I got sad for a long time when Dad died, but was uncharacteristically brave as a caregiver, for which I am proud. Then I got smashing drunk for six years, one of the longer quick fixes on record. Then I got sick, slowly, but seriously. Then I came close to being all dead and stuff. Then I found a drug combo that does not make me feel like a truck was backing over me every day.

Now I am trying to slowly get my body back, my life back, and see what happens when the movie does not end like I (and everyone else) thought it would. Heady junk, that. Scary too.

So read on if you want. Give me gobs of money to write a book. Make it into a movie starring Chad Lowe, because I feel bad for him after Hillary and he needs the work.