December 2005 Archives

I am sitting cross-legged on the floor of the terminal in the Greensboro Triad Airport. I just tried, and failed, to connect to the wi-fi system the airport is apparently auditioning. I even had a coupon. No biggie, I’ve been spending more than enough time and money on the dial-up connection this week. I cannot imagine I’ve missed too much. Besides, turning the Airport off will save power, and I’m going to need that to play my Civilization Game while I’m flying home.

Which is odd to say, because this used to be home. Long time ago. And the house I left half an hour ago, the one I spent the last ten days visiting, used to be my house. So much is just like it was when I left it in (gulp) 1984. But so much more has changed. Mom has changed, for one. She seems smaller, less confident, seemingly less capable. Old, and beginning to feel fear. Not the fear of death, we talked about that. More like the fear of not quite belonging to the world outside anymore, and a certain growing reluctance to engage it. She drives sparingly, and trembles at the thought of navigating the labyrinth of airport procedure to visit me in Atlanta, alone. She goes to her bridge games, stays at home, feeding the wildlife outside her suburban front door (a shocking mixture of birds, squirrels, possums, cats, and the occasional raccoon). Beyond that, she parks herself in the easy chair upstairs, and watches Will and Grace reruns. It is possible to watch television for seven hours on any given day and never leave the world of Will and Grace. I know. Been there for the last ten days.

It’s been a restful time, at a time of year when I am always restless. So being here without transportation, without much in the way of funds (spent everything on Christmas presents for people I don’t know or particularly care for, plus family), has been a struggle to maintain composure and stay occupied. Lucky, Mom does not receive an awful lot of phone calls, so I could tie up her phone line and web surf, do some volunteer work on aidsmeds.com, and even manage a little email return and last minute online bill-payment and shopping. My best friend is going to LOVE his gift. It literally kicks ass. I bought him a seminar for Krav Maga, a form of Israeli self-defense that he has been going on about for months now.

The week seemed to be one long day, then the frantic Christmas, then another long day. I can easily see how Mom has become rather isolated, living as she does in a well-furnished, slightly dusty shell full of entertaining diversions and intrusive memories. Scares me, because I get like that sometimes, in my own small apartment. Surrounded by so many comforts, so few real reasons to leave, I find myself, well, not. Looking to change that in the new year. I said that last year, but I mean it this time . I always mean it this time.

I slept in my father’s bedroom, in my father’s bed. Using pillows covered with rough decorative pillowshams to hug, or abrade my cheeks as I slept. Sleeping on the same side of the bed where my father died, in 2001. Sleeping in his distinctive impression, sleeping in his shadow. We talked about Dad a lot, and for the first few days, Mom would cry each time. After a while, it seems as though she started moving beyond the pain. A little. Me, I carry that pain in my dreams.

Aside from raiding the liquor cabinet on Friday night, to deletrious effect all day Saturday (fifteen year olf half-bottles of Wild Turkey, Gordon’s Gin, and what might have been Margarita mix not only makes for a lousy evening, it cuts a significant chunk out of your next day. Just saying) the week was spent more or less sober, with the customary glass of wine with Mom over dinner, which put her to sleep but only succeeded in making my head hurt.

I didn’t get very much in the way of writing done, but I caught up with almost all of my correspondence and I got pretty far in my Heroes of Might and Magic game. Honestly, anything to tune out Will and Grace after the third day, and Mom didn’t seem to mind, so long as I was in the room with her. Which is sort of what’s happened, really. She just wants someone in the room, and is intensely lonely most of the time. Yet afraid to venture out and make more friends. I think she still feels an obligation to keep mourning my father, her husband of fifty-one years. I get that, I really do. In many ways, I am mourning him too. And also mourning all the loves I have lost, and all the people I didn’t turn out to be.

I think the difference between the two of us is that I grapple with the notion of being able to resurrect some of those dreams. Torn between fear of change –(or fear that said change would be for the worse), and that almost unfamiliar tingling of hope for the future, for my future. For a future with me in it. I have to write that every way I can, to make it seem real.

Since quitting the meds, my energy level has steadily improved. My skin’s cleared up. My workouts are beginning to show (though for the past ten days it’s been nothing but sausage gravy and pound cake). I have started to consider the offer made by my friends in the (not defunct) production company in Los Angeles. They want me to move out there, live with them, restart our dreams and make a real actor out of me again. Dreams, it would appear, don’t die. But they sleep the sleep of the dead. I was ready to pull the feeding tube on mine… but maybe not yet. Not quite.

Staying with my mom for ten days reminded me what I have to look forward to, if I choose not to follow this new path. Choose the safety of isolation, the cold comfort of lonliness and liquor. Well, for Mom, it’s not so much liquor as Xanax and Lipitor. But regardless, every sign I have gotten this year to date has told me that I stand at a crossroads. Not much of a believer in signs, but barring a direct-hit by a meteor, it looks like the Magic 8 Ball of my life has been spinning nonstop since this past spring, when I left an ill-chosen boyfriend for a well-chosen visit to reconnect with my true friends. True friends, I am starting to discover, are very much like true Love. You don’t find them all that oftenl the movies and television will lie to you, and when you DO find them, and if you are smart, they are with you forever.

So where to, Jonathan? Where now?

Home, of course, to my apartment and cuddly ferrets and best friend and wireless internet and Tivo. Back to my gym membership and cautious dating and researching HIV transmission vectors for strangers. Back to life. And maybe even, back to Life.

I have spent the holidays in a place surrounded by pretty things, fragile pieces of the past. Beautiful antiques and easy escape from a scary world. I have seen the future, should I choose that route. It’s sad, it’s lonely, it’s an abject waste of material and talent. It’s waiting to die, and occupying the time between here and then with as much busywork as any middle school delivers the final two weeks before summer break.

Only, thing is, I’m no longer convinced, as I was, that summer break looms quite so close. These word-search puzzles, these surreptitious notes, this daydreaming, can only fill so much time. Oddly, using the school metaphor, I really am here to learn. And I know I don’t learn passively.

I am actually excited about coming back to Atlanta. Maybe not to stay. Maybe not to die. But to get back to the gym, to get back to my pets, to get back to my plans. This time next year, I might find myself on a similar plane, heading from Los Angeles to Atlanta or Greensboro. Temporarily leaving a life I am equally anxious to get back to, only for far different reasons. This notion of a future is easily as frightening as the notion that my best and brightest days have already passed.

To think that tomorrow, and the day after, has more to offer, is daunting. It requires much more of me than I have been asking of myself recently. Requires far different choices in boyfriends, in pastimes, in activities. The easy numbness of the all-week drunk suddenly gets in the way of things. Important things, things to do. Like working out, writing music, writing scripts, getting out of the house and finding a place on this unstable planet upon which to risk my balance.

I have no illusions about my ability to fall, to fail. I will probably date more wrong people, sleep with wronger ones, require painful Bicillin shots to compensate for both of these things. I will probably get drunk and make phone calls I shouldn’t, or have conversations I shouldn’t. But maybe, just maybe, I will also hook up my keyboard, spend afternoons at the internet café tapping like this. Maybe going rollerblading with someone worthy of my time and effort. Maybe even gently nudging some dreams form their easy, deep slumber.

When they wake up, I expect that they will be very, very hungry. And I will have to feed them. There are battles to be fought. There are causes to embrace, and my voice needs to be heard. Injustice is right where I left it, almost a decade ago, demanding to be fought. HIV discrimination, intolerance, fear, the greed of the organizations trusted to help the sick, and the indifferent disdain of a government that would happily see us vanish. None of these has changed terribly much, and I have the opportunity to rejoin the battle.

I was tired, God I was tired. But I’ve rested enough I think. The obligations to myself and to the world I inhabit have not dissipated. And I think it’s time to rack up some more experiences, some more karma. It’s starting to look possible. No, strike that. It was starting to look “possible” months ago. Now, I have a To Do list, and am running lean on excuses to sit out the game.

I am in a metal tube barreling through the indefinite sky. I am trusting physics and chance to bring me down again. I am an object in flight, and Newton’s law demands that this motion, once instigated, wants to continue. In short, I got stuff to do.

So I sat there in my doctor’s office, and stared at the wall, the lamp, the floor, everything but his face. I like my doctor. He looks sort of like Joss Whedon, and is very approachable. Very friendly, chatty. And he stays on top of the science, which I find cool. Also, he has not tried to ask me out. Believe me, when you have had experiences like mine, these tidbits become more and more important.

So anyhow, I am making a confession. I preface it with the semi-funny request, “Please don’t break up with me.”

He chuckles. “I’m not going anywhere” he replies.

Ok, so here goes. Like most people, even though I intellectually know it for crap, I still have the authority figure thing going on with the doctor. He does, after all, hold a considerable amount of power over me. Especially since I am on Medicare/Medicaid, and the options for ID specialists that take that pseudo-insurance are NOT broad.

I stopped taking my meds.

My adherence for the first few months on my new regimen was as good as it’s ever been, better than ever before, actually, but still only maybe 90 percent. Which, with HIV meds, is close, but not quite good enough.

Moreover, I felt like crap most of the time. My life became confined to the bedroom, the futon in the living room, and (especially) the bathroom. The AZT made me weak, and fevery. The Norvir made me nauseated. The combination made me a prisoner of my bathroom for hours out of any given day. Thank God/dess I have wireless internet and an iBook. ‘Nuff said.

The quality of life sucked. It sucked big time. My body was flabby, my brain was stagnant, I was finding myself obsessed with death. I stopped planning for a future, any future. I started researching ways to kill myself. I just wanted it to be over.

During this depressing time, I stopped taking my antiviral meds. After all, when one is looking into the cost of renting a helium tank for unapproved use, one’s viral load becomes a tad less important. Oddly, I still took, take, my Wellbutrin.

After a month and a half off meds, I noticed something. I started feeling better. My bathroom visits were not nearly as frequent. My fevers not nearly as bad, nor as often. My fatigue started to lift a little, at least to the point where I finally noticed the mess I had been living in. I still have much to clean. I started working out again, tentatively at first, now with some enthusiasm.

I started going out again, to visit friends. A couple of times, I even went to a bar to watch Karaoke. Got flirted with too, though that could have been the sweater. It’s a really nice sweater.

But I was avoiding the doctor, and the blood draw that would surely peg me as a Bad Patient. I avoided him for two months. Until this week, when I decided to be totally honest, practice a little of what I preach. My goal in life is to minimize my hypocrisy. I know I can’t totally eradicate it. I mean, it comes in handy way too often, like white lies or hair gel.

Anyhow, I did it. I risked being bumped off the patient list, risked having to once again search for an ID specialist (and probably continue the same avoidance regarding meds and adherence). Thing is, I have been on meds, on and off, since 1993. I KNOW what they do, and I know that they impact me pretty strongly. I know this from experience, and I get so tired of doctors telling me to try them anyhow, because this time it will be difference. I was starting to get Battered Wife syndrome from going back, knowing what lay in wait for me, every time. I had had enough. Have had enough. And I stopped running, stopped pretending, and told him.

It wasn’t only the physical symptoms, but just treatment fatigue in general. Some people can do this adherence thing with the meds. With some people, that particular discipline is a strength they possess, and possess indefinitely. It is not mine. I have many strengths. Well, a few, anyhow. But not that.

So it all rushed out of me, all in one run-on sentence. And when I was done, I felt relieved. No matter what happened now, I was being honest. For what little it was worth, I had reclaimed a little of my integrity. And believe me, I don’t have any extra to spare.

He leaned back in his chair, and looked at my chart. In September, my T cells were 140 and my Viral load a cool quarter mill. It was obvious then that I was off my meds. My resistance testing, which is useless in picking up latent pockets of HIV, showed me sensitive to almost everything. Another good sign I was off my meds, because that wild strain does not become predominant when a person is chugging Reyataz and Norvir.

He knew, he had to have known.

And he said that it was okay. Not what he would want to happen, of course, but it was okay. He wanted to revisit the issue in February, and wanted me to take the bactrim and the Wellbutrin and the allergy meds, of course, to stave off wicked infections and the crazy. But he said he understood. We agreed that the notion of these lifelong cocktails was a very new concept, and that many people were in my very position, especially after a few years of side effects. He also said that he respected my choice to live the best life I could wrangle, even if it meant shaving decades off the end of it. He also said he would be there for me, as long as I wanted him to be.

I left the office feeling like a weight had been lifted from my shoulders. Sore from the flu shot and the half gallon of blood drawn, but feeling like I had faced a fear and walked (staggered) through it.

I want to live more of my life like that. I called a guy I had dated in October, then disappeared because I was afraid that he would not like what he found out about me. Left a message, and maybe we can meet for lunch and revelations. I’m on an honesty kick, and though it might cost me, at least I will be able to say that my fear is not as great as it was before. And I have made far too many choices based on fear in my life… and not a one of them turned out well. Fear is my enemy, moreso than HIV and AIDS. AIDS can, and probably will, kill me. Fear makes me dead already.

Not so cool with the dead, not anymore.

I have even been hesitant to post this on aidsmeds.com, because I was afraid of setting a bad example or looking like an idiot or getting judged by the peers I respect so very much. But I can’t live like that, and certainly can’t maintain any integrity by being flagrantly dishonest.

I am off my meds. Indefinitely. This is not a STI. This is a choice. A choice I can revisit any time I want, but a choice I have made, for today, to determine the course of my life.

And whatever questionable value this choice, any of my choices really, contain, I am comforted by this: I am still alive. I have had PCP four times, cancer, parasites, crazy brain swelling, neurosyphilis, and a host of other infections related to a depressed immune system. It’s been over ten years since my AIDS diagnosis and first OI, and yet here I am, still here. Crappy drug adherence, drinking too much at times, sleeping around too much at times, dating people whose mission in life seemed to be to kill me with stress, and I am still here.

My body might not like the meds, not like them one tiny bit. But the damned thing’s got some endurance. It wants to stay here, and for today, for this moment, I am inclined to support and encourage that decision.

I gotta run. I don’t want to be late for the gym.