Jonathan's POZ Blog

My brave face

Haven’t blogged lately. Or written much of anything at all in the last few months. Been terribly tired, presumably recovering from PCP. But recovery is a tricky thing. In the case of pneumonia, it’s an excrutiatingly slow process. Days melt into weeks, and I notice little improvement. But not dead, not yet, and that counts for something.

So I spend a lot of time sleeping, or trying and failing to sleep. Some days it’s just a matter of breathing in and out, repeat as desired.

My friends know a little of this, but just a little. I try to put on a face for them. Don’t ask me why. I am so terribly sick of being sick, of having AIDS and being tired. So I muster up energy a few times a week to socialize, make dinner, hang out, talk on the phone. And the old Jonathan comes out. The one I actually like. The peppy one, with the sparkle in his eye and a penchant for buggery.

Then I go to bed for four days, and my friends are mystified, think I am angry or depressed or isolating. Seriously, am not. Just tired. Just bone tired. Sand in the eyeballs, weepy tired. Then again, perhaps I am depressed. I am certainly frustrated. I want to move in some direction, and there are times when I really don’t care which. Die? Get better? Whatever. And no one knows this, because to my friends, to my Mom, to my family, I put on the Brave Face. Or disappear.

And honest to God/dess, I don’t know why.

My ferrets are always up for a cuddle and a kiss. And if making out with my pets gets me through the night, then pass the chapstick. That tiny bit of affection from animals who sleep as much as I do makes a profound difference. I don’t see how people get through this alone.

I figure, every day I am on this side of the grass, I am moving towards better things. I have to believe that. The pills make me awfully queasy, especially the Mepron which looks and tastes shockingly like phlegm mixed with firefly.

So I put on my brave face sometimes. When I can. And maybe… eventually, that face will belong to me, for real. Just keep breathing, right?

Right?

"I touch the fire and it freezes me.
I look into it, and it’s black
Why can’t I Feel?
My skin should crack and peel…

I want the fire back."

from Buffy The Vampire Slayer

Say what I might about Joss Whedon. His handling of Serenity was an extended and forceful urination on his fans of Firefly. His dad almost singlehandedly took the Original Dick Van Dyke show and made it jump the shark. But he did, sometimes, channel some amazing emotional places. One of those being the feeling of loss and helpless hopelessness, of the conflict between having been handed peaceful death and having complicated and painful life thrust back upon a person. The guy knew about that. Or his muse did. Or Marti Noxon did. Whatever.

I feel as though I have been waiting, even hoping to die, ever since my dad did in 2001. That’s when I started drinking again, with a vengeance. And it was not some sort of accident of coping. I started drinking again because I wanted to coast the Jonathan Plane into as controlled a crash landing in the dark sea of despair as I could manage. With as little collateral damage as I could muster, and maybe along the way write one or two words that mattered. But make no mistake, I have made every choice from a brilliant clarity, drunk dials and near-blackout sexual choices notwithstanding.

And for a while, it was liberating. I finally told my dysfunctional boyfriend what I thought and felt, and how I had been stifled for years. Then I broke up with him, and pursued the inner tramp that I had for so long denied. I stopped taking the drugs which were making me feel like crap every day. I changed doctors from a distant, authoritarian, judgmental dictator to a sweet, smart, intellectual. I did some good things. Some important things.

Not because I was drinking. But because I had stopped caring what others thought of me. My life was over. My descent from the shallow orbit that is AIDS into the fire-flung thermosphere, without ablative shielding. Without anything but the innate certainty that I did not want to live in a world without my father in it. Without the physics to understand the world without it’s most primal and important feature.

Mom is doing the same thing. She doesn’t take great care of the homestead anymore. Maintenance things, like getting the air conditioner serviced, or getting the house painted, or making certain all the fixtures work or the water is hot. These things, these gestures of continual vigilance, of commitment to survival, seem beyond her. And she almost resents the notion of doing anything but removing herself from the world bit by bit, until her universe is her comfy chair, her bathroom and bedroom, occasionally a kitchen, and perhaps the mindless social construct of her bridge games.

But she checked out of Hotel Earth when her husband died. Her continued support and camaraderie as far as I am concerned is a testament to her love for me. And for that I am grateful. I wonder if she realizes that it goes both ways.

That disconnect, that patient, even cheerful dissolution, is very seductive. And I can only complain to Mom so often, so hard, that she is letting things slip. Because I get it. I do. She and I share that, that coasting downward.

Not the crass crash landing of a suicide, or even of a self destructive lifestyle... just of the lack of serious effort to treat or heal. Sort of spreading your tattered wings and coasting down, knowing that you are heading for a crash but making the ride down as easy as possible. I see my Mom doing the same thing.

I bitch to her about getting the plumbing fixed in the house, or getting the Air conditioner serviced. But I finally get it. She just does not care anymore. In a real sense, she died when her beloved died.
its only cruel fate that has forced her body on this side of the fence for the last seven years. Maybe that and the love she feels for me, the feeling that I would be utterly alone and adrift were she gone.

I certainly wish I had died in August of 2001 instead of Dad. And I know how that sounds. Like clinical depression. But isn’t it reasonable, rational even, to feel depressed when one’s world is upended? When one’s reasons for living are removed? When the things that make us feel full, feel alive, are gone?

I have 23 T Cells. I have a viral load that cannot be measured.

I have PCP, which might or might not be returning. I have elevated levels that might or might not indicate brain damage. I have liver damage and resistance to many meds. More than all that, I have fatigue. Not only the physical type. That, well, you can thank the AZT for a lot of that.

Just the fatigue of having done this already. Of having gone through all this, and learned all I can. I just want the next thing to emerge, and I am not sure what that is. Is the next lesson How To Revive Lost Lives?

Is the next lesson How to revive that lost intangible connection with the universe? That would be cool. That’s the one lesson I have yet to learn thus far. That’s the one connection I have yet to make. People wonder why I am hesitant to meet them for coffee, when they seek me out on the personals pages. They don’t understand… because I don’t tell them… that I can not address the notion of love in this world until… and unless… I first address my own commitment to staying a part of it… which means.. becoming a part of it again.

That is a lot to ask.

from the comments:

"This is the biggest pile of self-serving, crybaby bull that I've heard in years. If you aren't taking your meds you don't get better. Pity parties are for cowards. 23 years with HIV and 2 bouts of opportunistic illness later, I have never missed a doseage and have near normal counts because I'm not swimming in the foul cistern of "poor me"

Maybe people around you would stick around if you didn't foul the air they breathe with your crap and did something productive instead of wallowing in self pity and drama. Quit thinking of how the world stinks and do something to make it better. That will make you better too. This crappy blog just depresses the crap out of anyone with a sense of self."

Why blog?

I was asked to blog a few years ago by POZ. Not because I was all sunshine and the poster child for medical treatment. But because I was honest and willing to be raw and vulnerable and put things out there. Willing to be real, when others want desperately to toe the party line. To be one of those people who has trouble with the meds, when many others are not. And to be honest enough not to be browbeaten into silence when everyone seems to want to paint a rosey, unilateral and wholly unrealistic portrait of living with AIDS.

As I mentioned before, I am recovering from PCP and often feel sad and hopeless and exhausted. The meds I have taken thus far have had deletrious impact on my quality of life, to the point where I am hesitant to try again. I do not prescribe that my experience is applicable to anyone else. But I own it. It’s mine. And anyone who knows anything about me at all knows I am not someone who whines or who indulges in self pity. As a matter of fact, the honesty and vulnerability I have exhibited on this blog is entirely unlike me. I normally keep my feelings to myself. Often friends and family are the last to know. But the writing is important in a way both cathartic and nurturing.

Sometimes when I am bashed, it makes me question my commitment to that honesty. Makes me realize that some people are so afraid of their own foibles and failures, so desperately in denial or so full of rage, that they would rather shout me down than let me talk.

You don’t like what I have to write? Don’t the hell read it. You hate my attitude? Ignore me, ignore my blogs. You want to hurt me? You will have to try harder than to post hateful commentary on my blogs. You want to practice tough love? That shit only works when there is a history of actual love. Seriously.

To be fair, I have attempted to engage the people with negative comments via private email. The poster I quoted, unsurprisingly, was undeliverable.

I have wonderful times. And have awful ones. I feel blessed to have incredible friends and family. I do amazing things. And sometimes, often for protracted periods of time, I feel sick and frustrated in a body that does not want to cooperate with my spirit, which is naturally ebullient.

And that’s just me. That and the ability to string words together. And I will never apologize for it. But what I might need to do is rethink how much I give away for free, when the result is nasty and hateful. Ya know, I read all the blogs myself. And have commented a few times. Would NEVER occur to me to punish someone for being honest, regardless of the content of that honesty. That some people online feel no such sense of decency is not shocking, not at all. But it just reminds me that Lily Tomlin was right; no matter how cynical I get, I can’t keep up.

. I blogged about my wonderful visit with Melia on my myspace page precisely because I did not think it was something I wanted to throw to the wolves here.

There seems to be NO way to report a hateful or inappropriate post. There seems to be no required subscription to the forums or to the blogs in order to comment. I can certainly delete them. But you know something? I am not going to. I want the hate to be out there, along with the love. I want people to see that having AIDS and being sick makes people acutely uncomfortable. Having – and expressing – moments of sadness and helplessness brings out the nastiness in some people.

My life is not an unrelenting saga of sorrow and pain. I have great times with my friends, my family, my pets, by myself. I blog about these too. But to ignore the darkness is to so a great disservice to the real and powerful love and hope that exists in the world. I refuse to write comfortable stuff. I refuse to write politically correct stuff. I was asked to blog about my life, and that’s exactly what I am doing.

If anyone has a visceral reaction, be it negative or positive, then I have succeeded as a writer. Hate me, call me a self pitying whatever, I made you think. I made you feel. I prompted you to write, however cowardly and anonymously. Those nasty comments are badges of honor, and I intend to keep on encouraging – and collecting – them.

This is not your AIDS. It’s mine. Its not your life, your heart, your world. It’s mine. Its ugly, and gorgeous. It’s full of pain and hope and love and loss. It contains regret and resolve. I am fallible. I will not ever be a great patient, or a perfect man. My flaws are what make me real, and working on them makes me strong. I might not survive some of my choices, as time is not a luxury I really have.

But in the interim, I will be the only Jonathan I know how to be. If what I have to say bothers someone, then I shall gleefully See You Next Tuesday.