Saturday, August 16, 2008

my post on

Terri, to my knowledge, the only thing you have pointed out was that blake was posing as gina in ONE post in the midst of the bannings.  To that end, you are just as wrong now as you were then, before this was all exposed. 

I would commend you for being brave enough to speak up, but the fact is that’s not the case.  Your reply was made out of spite, nothing more.  Please try not to break your arm patting yourself on the back.

As far as the fiasco, there are a lot of people confused and hurt by this.  Several of us were very close to the situation, and our support was motivated by a deep fear; a fear that we could one day be in the same situation and we would only hope that people would be there for us as we were for her.

I believe this whole situation served its higher purpose.  The real shame is that it took one fraud to expose another.  One being the obvious – gina/pepe; the other being that this site is a safe haven for people with cf as well as caregivers and families.  The fact that the proprietors of this site have been banning, with what appears to be extreme prejudice, only cystics alludes to the true perspective of the site’s founders.  The idea that we cystics are in need of salvation, and this site is the answer to our proverbial prayers, the proprietors being our would-be saviors, is degrading to say the least. 

That attitude was present long before the trolling, and while the latter may be more maliciously aligned, the former has a much larger impact.  I, for one, am glad it happened.  Being one who has been close to gina and an avid participant on this site for years, I feel more betrayed by  

Monday, August 11, 2008

The Light Touch

“Being God isn’t easy.  If you do too much, people get dependent on you.  And if you do too little, they lose hope.  You have to use a light touch…. When you do things right, people won’t be sure you’ve done anything at all.” 

-God, as depicted by Matt Groening, Futurama

When I first began to think for myself, I was lost.  It just so happened that a local youth group, at that time, was looking for strays.  I shared a few classes with a number of them; hence I was a likely target.  Two weekend retreats and a national conference later, I was as good as saved.  It was an emotional occasion – complete with tears and hallelujahs.  But mine were tears of despair, for I felt like the same lost soul I was when I signed up.  Where was this ‘holy spirit’ I kept hearing so much about?  Sure I enjoyed the attention, and being a part of something was anesthetizing, but I wanted what everyone else seemed to have.  I wanted peace; I wanted joy; I wanted hope; I wanted what I saw everyone else enjoying – grace.  These kids were enthusiastic, confident, happy.  Happy.   I very much wanted to be a part of that.

            I did everything I was supposed to.  I accepted Jesus as my personal savior, I ate of his body and drank of his blood, I was baptized, and I shared the good news.  I even meant every word.  But the lord never brought joy into my life, only more pain and confusion.  The change wasn’t happening for me.  I still felt the same emptiness that must have fallen upon Job in his time of persecution.  Only I didn’t have the luxury of faith prior to my condemnation.  Nothing had changed for me.  I was the same tortured soul I had been the years before. 

            My youth pastor assured me that if my faith is real and true, the change of heart would come.  Well, it didn’t.  no matter what I did, I never felt the presence of grace.  No matter how hard I tried to convince myself that my faith must not have been true, the fact is, it felt like the most real thing I had ever known.  Maybe my expectations were too high.  Maybe I was asking too much.  No, this wasn’t some government program I’m talking about - some worldy parental figure – this was the almighty; the alpha and the omega; the beginning and the end; Jehovah; Allah; God.

No, it must be that my faith wasn’t good enough; not strong enough.  This wasn’t the first I had heard of such a thing.  This was Anton LaVey’s disclaimer on spells he claimed would empower the performers of certain rituals.  He disclaimed that the spell would only work if one’s heart were pure, if one was free of all doubt.  Lest the spell fail to provide the desired outcome, it was not for the failure of the incantation or the lack of power of the entity evoked, but because of the weak will of the conjurer.  So, if efficacy of faith is the deciding factor, what the hell do I need Jesus for?  Or God?  Or Allah or Satan for that matter?

            The lesson I was learning was one of semantics.  All of these entities are the same.  Certainly each deity is associated with a different set of moral perspectives and dogmatic value judgments, but each serves the same purpose to its adherents.  They all exist at the edge of understanding; there is everything we know, and anything beyond that is relegated to the work of god, whatever way one has defined it.  The best gods are infallible because they are unknown - everything about them inprovable.  If the god is proven to be or not be, then it is no longer unknown.  It becomes finite, limited, fallible.  If one’s faith is invested into something like, say, an egg, and that egg breaks, what happens to the faith that was focused on the egg?  It becomes just as broken as the egg.  So faith is aimed at something infallible so as to maintain its strength, thus empowering those that tap into it.

            So I have relinquished my quest to challenge people of faith, whatever way they have defined it.  I have decided to join them in surrendering my suffering and hardships over to trusting that all has purpose.  Labeling my faith, however, becomes tricky.  Let it be known that I have faith in the unknown.  And although every advancement of science seems to push the unknown farther and farther away, everything is in circles.  So by pushing it away, we are also pushing it closer.  

Thursday, June 12, 2008

A Chemical Love Story pt 1

All of my life I’ve been dependent on chemicals; synthetic enzymes, various steroids, and an array of stimulants…ahem... bronchodilators, to name a few. Aside from life sustaining meds, there have been the band aid medications; Ritalin, codeine, valium. Given this conditioning towards experimentation, a certain level of comfort with different forms of medication, and exposure to various unpleasant administration methods, it is no surprise that I might be predisposed to using illicit substances. All I needed was for the opportunity to present itself. And it did, over and over again. Had there been alcohol in my house, it would have started there, but there wasn’t, there was pot. So began my love affair with chemicals. I hadn’t known that there were things out there that would actually make me feel better, rather than just improve some arbitrary number or alleviate but one symptom at a time, even if only temporary. A substance that could make me laugh, quiet my head, and make me eat, all at the same time. It was divine. The docs were surprised when I gained almost twenty pounds inside of a three month spread. Of course, they weren’t concerned about how it occurred, just ecstatic that it did. Good thing, too, because I wouldn’t have wanted to have to lie to my doctor.

If pot had been more socially acceptable and readily available, I may have stopped there. But my newly found friends introduced me to an entire sub culture bent on hedonism. Here, my illness did not matter. People did not pry into my awkwardness. I was thin like the meth addicts; I coughed like the potheads; and like everyone else, I just wanted to be my own degenerated self, free of the pain; free of the anxiety of existing in a world that was not set up for the sick. I learned to embrace my self destructive tendencies, and it felt normal. After all, my body was trying to kill me.

By seventeen I dropped out of school and left home. I didn’t go far, just around the corner, but I had really left years before as my stepfather was learning that there was more to marriage than fucking an older woman. But being away from them allowed me descend farther into the chasm of addiction. Sure I had dark days, really dark days. Days wrought with thoughts of suicide; days of hunger, only to be appeased with another of whatever was around. Loneliness, God was there loneliness; and intense isolation from an outside world I had once wanted to be a part of. But I embraced all of it. A chemical cocktail of emotions was enough to liven any dry day and alleviate the pain of sobriety, but they rarely lasted. Sustenance has never been too far. I’ve been lucky that way.

Then one night, at a techno party downtown, I came to really know a substance I had met before, but never taken seriously. Before, it had usually come to me in the form of a cartoon character on a tiny square. This time it was in a vial, and a much stronger dose. With this substance I was able to see right to the core of me, whether I wanted to or not. I didn’t even know I had a core, but there it was, surrounded by a dark ominous shadow. Thick walls of misery obscuring a disjointed soul seemed a mere pane of glass to my awareness. Through the cold, empty, paralyzing darkness engulfing my being, I could see right down to what looked like a kitten hiding in a corner, crying. With every pained meow, its impressionable eyes blinked with overexerted grace – the erratic breaths of panic – complimenting the vibrato of the whimper. The cry sounded…felt…so familiar. Something in the timbre was screamed of desperation and confusion. Ease rise and fall drained just a little bit more, and the whimper faded to a murmur, then drifted into nothingness. It hit me so hard…I was going to die young, and I knew it. And for the first time I realized how scared I was. Twenty-three years of avoidance and denial couldn’t prepare me for this moment.

I thought so much about what it would be like to just not be. Nothingness. Void. No pain, no joy, just…nothing. And here I was somewhere, but nowhere, all at once. I wanted so much for to calm him down, to tell him that he had nothing to fear. But I didn’t even believe that at the time. I knew it was bullshit. There was everything to fear. Confronting alone won’t make it go away, but even that was yet to come. At that time all I could do was cry, too; I felt like curling up inside that heavy cloud and at lest try to chase away the shivers – his and my own, but all I did was cry. Until I woke up; and there I was again, certainly somewhere. But what had happened to me was real. What I saw, what I felt was still echoing inside of me. One day I would listen, but then, that morning, it was too much. Time to fix that.