My Whole Expanse I Cannot See…

So, there’s a video clip of Kurt Cobain in concert, it’s a clip from Nirvana’s Lithium video. He’s in a crazy white lab coat thrashing around on-stage, just trashing everything in a totally manic fit. At one point, he’s on his knees holding a giant amp and banging his head against it.

To me, I think it’s one of the great visual metaphors for frustration and lack of control. It’s usually the absolute first image that comes to mind when the entire world seems insane. I see it plenty enough and I’m glad it’s there for me. I drift to lots of images like that, different things for different moods. I actually think about why I do it, and partly, I think it’s how I experience physical emotional outbursts. A fellow gets really upset, maybe he puts his fist through a window. I can’t put my fist through anything, nor can I even imagine myself doing so. There are certain things for which I just don’t have a frame of reference for myself, so I pick an approximation from elsewhere. Why bang my own head into an amp when Kurt Kobain does it so well?

I love it when something I’m reading reflects things that I often think on. I’m currently reading The Tyrant by Michael Cisco and last night I came across the following passage…

When Ella was thirteen, she realized she was going to die, and for a month she lay awake every night in terror, flat on her back afraid she might vomit, rigid, nodding and starting nearly jolting herself out of bed, finally she would fall asleep. Now she sleeps better but with no warning she is sometimes ambushed and paralyzed with terror of death … Looking around the car, she can see each of these faces in its casket, grey flesh limp, eyes fallen in, nightmare caverns of stiff nostrils black as pitch, sagging ears, slack cheeks drooping away from a wired jaw and permanently sealed, livid mouth … The opposite bench is empty, in the black pane of the window above it there’s a wan dewy frowse, Ella, and above all she can see that face in its casket, purple-black bruises make a wide ring around her eyes, her hair dry as hay, weirdly friable and clumsily gathered on the stiff cushion – “just fucking burn me” she says with cold lips sutured shut.  In her mind’s eye she’s searing, melting and shriveling in the flames, locks of hair flap here and there in gusts of fiery wind – and that would be something like life, it would be a decision – as if she had set the fire – instead of that passive acquiescence to rot away in a wet hole.

I’ve had that exact kind of experience. I remember as a kid, maybe ten or eleven, something like that, I’m in the van looking out the window when the idea hits me that one day the sky and the trees will keep going, but I won’t, I’ll be dead. My mom, my brother, they’ll die too, but even then I realize I’ll probably die first. Everything will keep going, but I won’t. Then I start to think about everything that happened before I was born, how I didn’t exist and time kept going until I did. I remember being absolutely terrified for a few minutes. I remember that experience vividly. Long before the last year or two, before tasting it so many times, I’d thought about death and time and existence.

Sometimes, especially at the mall, I look around at everyone with their cellphones and shopping bags, I think to myself that we’ll all be dead. People who are so young and stylish, texting their friends and drinking chocolate lattes, they’re all going to lose everything that seems so important right now and they won’t exist. I think how some will grow old and die quietly. Some will get sick and die in hospital, slowly, they’ll know it’s coming. Then, of course, I think of myself dying, how it’ll probably be some kind of acute respiratory failure. At least for a few minutes I’ll know what’s happening and I won’t be brave about it. Everyone in the entire mall will be gone, but the world will keep going and that day at the Macy’s and the Starbucks won’t matter at all.

I’m definitely not obsessed, but I do think about these things. Sometimes, like Ella, I don’t sleep.

So, this is kind of a local to Tampa hate blog. On Saturday the 19th we’ll be host to the first annual Red Bull Flugtag. Basically, the event involves people building homemade flying machines and riding them down a 30 foot ramp in order to soar over Tampa Bay. However, most of them don’t so much soar as crash and sink. Yet, it’s THE BIGGEST EVENT IN TAMPA, it’s on the news every day, people are burning with Flugtag fever. Some cities get art festivals or renowned stage-plays, we get Flugtag. Oh, and to make the event even more classy, their web site has super awesome embedded audio which makes any site extra cool.

Well, the Emmy nominations are in and This American Life is up for five, four of which are attached to my episode…

That show saved me in many ways, so I’m really glad to see it so recognized. I hope my actual life lives up to the episode.

So, I’ll be honest, I think that overall I’m much better at writing about bad things that happen. If zombies showed up tomorrow I’d definitely write something spectacular, whereas if the Rapture came and it turned out that God decided to just forgive and forget everything, I’d probably be inclined to ascend and not write about God being such a good sport. Still, I have to say…

I have had some really fucked up trache changes, especially the one in June. However, my last one, on Monday, was pretty spectacular. My anesthesiologist was Doctor Devenard Manger, an absolutely excellent doctor. I’ve had him before and he always treats me perfectly. He’d heard about my last astonishingly bad visit to the OR and said he’d make sure that nothing like that will ever happen again. He gave me his card and said to just let him know before I come in, he’ll make sure he personally handles every procedure. I fell asleep feeling safe and happy, which is all I really ask.

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I feel the need to note that by way of my peg tube and lots and lots of foods, I’m clearly becoming morbidly obese. I didn’t actually realize it until my Sara pointed out these photos…

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Please, somebody, call or write Richard Simmons, or even Maury Povich. Help me get the help I obviously can’t get myself.

So, it’s been kind of an odd experience being social post-trache. Honestly, at the beginning the entire prospect of making new friends and keeping old ones seemed really difficult. At 27, I was pretty used to talking. I always used to be fairly socially self-conscious, internally far more than outwardly. I’d run everything by my little internal censor thirty times, then he’d run it by a committee of nuns, then if everything passed I’d say it. I also had this problem with my jaw getting tight, which definitely made me feel awkward sometimes. Still, I was talking, which seemed better than not talking. However, when life goes really insane, you either adapt or break. I’m adapting more than breaking. Though, I’ve broken enough too.

Well, Tuesday, I decided I’d go meet an old high school friend for drinks at Starbucks, we started talking again through the magic of Facebook. Lately I’m oddly compelled to catch up with people I knew back then, though it’s a little hard to explain why. Like I said, I was pretty reserved back then, and I had a great deal of social and general anxiety that kept me from doing a lot. Today, however, I’m not afraid anything that used to scare me, I’m sure as Hell not afraid to talk to people. I suppose almost dying a bunch of times, a little drug addiction, some hard drinking and a lot of brilliant sex changes a fellow’s perspective. I guess I want people to know I’m not that quiet kid who got lots of A’s, but didn’t really talk to people. At any rate, I invited Priscilla for coffee, which ended up being steamed chocolate soy and tea.

So, I start off by making a few spectacular decisions. I pick the busiest Starbucks in the area at 5 PM, a time during which it’s guaranteed to rain torrentially. We pull into the parking lot and on cue, the sky promptly opens up and rain begins to fall. Flashes of lightning result in instant and astonishingly loud claps of thunder. It’s probably like what Noah saw right before things went really wrong. So, my assistant, Sarah (with an H), and I get fairly damp hoofing it inside. Since I haven’t seen Priscilla in over half a decade, I decide to go all out and bring along my travel computer and my switch in order to converse via the wonders of technology. The thing is, I don’t actually take my computer out much socially. It’s a lot to carry, I can’t move around and use it, and if my hand isn’t warm enough I can’t use my switch, which makes the computer useless anyway. Taking a computer and feeling the need to take a computer everywhere is a struggle for me. I find that if who I’m with is willing to talk via the alphabet, I have a much more relaxed time. It’s nice to be able to take a break from typing, from being tethered to so much technology. It’s nice to just go somewhere and not worry about having to use my switch, not having to worry about my hand being too cold to type anything. Really, I don’t like the idea that without a computer I’m completely fucked, it’s unsettling having to totally rely on technology just to have a conversation or to say that I can’t breathe. Going out and having a good time, feeling safe without a computer is truly freeing. I learned that from my Sara. We can go anywhere, have spectacular conversations and not be tied to technology. Still, using the alphabet is different for everyone. Some people still can’t get used to it, the potential slowness, the initial awkwardness. Intellectually, I understand it, but it’s discouraging sometimes. I can’t talk to my brother when we go out, he still can’t get used to my third language. Thus, my plan was to sit outside, away from the air conditioning, to chat digitally with Priscilla. 

Of course, with the torrential downpour, we’re inside. It’s ice-cold because of a state law that demands all Florida buildings to be hyper air-conditioned from April to October and we’re relegated to one tiny table because nobody wants to sit in the rain, but nobody wants to go home either. Also, I’m rather damp, making my hand extra cold. The computer is useless. Now, some months ago, I would have been pretty mortified. I’d have assumed that Priscilla would be bored and hate me. I’d have wished I’d stayed home. Fortunately, that me died, probably after the last trache change. Seriously, sitting there in the freezing cold Starbucks, the lights flickering after cracks of lightning, all I’m thinking is, “Holy Christ, this is going to be fun to write.”

Priscilla arrives and Sarah explains that my hand is really cold, so I can’t use the computer, but we can still talk using the alphabet. Unlike many, Priscilla catches on quickly. She takes over of my fancy pen, and my little notebook, we don’t have to translate through Sarah. I should explain, talking with the alphabet involves a person saying each letter of the alphabet and me signaling with my eyebrows when to stop at a particular letter. Then, each letter gets written down in a notebook. I have a ridiculously decadent forty-five dollar pen, because if I have to do something so absurd, I should have a really nice pen. It ends up, at least from my perspective, being a really nice evening. I want to tell her, “it’s Diving Bell, the Interactive Experience!” But I don’t. It’s a lot of letters and I’m not certain she’s even seen The Diving Bell and the Butterfly. It’s a joke I let slip. Interestingly, we end up meeting a woman who saw me on TAL and was quite “inspired” by me, convinced that I’d be really excited about “accessible playgrounds,” and a professor from my stint in design school. He was absolutely certain I’d done a spectacular project on jazz in the roaring 20s and I totally said I remembered, but the closest I’ve ever come to the roaring 20s is dressing as a zombie flapper for Halloween. Still, it’s much easier to let him remember my project. 

I had a good time, I’m pretty sure Priscilla had some fun, and I definitely got something to write. 

One of my favorite authors, Jeff VanderMeer, recently posted some excellent advice for writers wanting to have a solid presence online…

(1) Choose your level of involvement with the internet, and stick to it. If you want minimal involvement, create a static website about your book or other creative endeavor. العاب ربح الجوائز حقيقية If you want medium-level involvement do a blog. If you want more, do more. But decide upfront what your approach will be, how much time you can spend, and whether you can actually follow through or not. تعلم لعب البوكر As in any area of life, you will be judged by what you do, not what you say you’re going to do. العب واكسب The disconnect between words and actions will determine how much integrity you have in other people’s eyes.

It’s definitely worth a read.

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I’d been avoiding it for years, but I finally broke-down and joined Facebook. However, I still refuse to read The Da Vinci Code!