My Whole Expanse I Cannot See…

So, the Super Bowl is in town, as is my entire family. They’re all massive Steelers fans, massive enough to spend an entire day at the Steelers’ hotel waiting for autographs, sometimes prostituting me for said autographs. They’re family, so I don’t mind whoring myself for a special occasion.

At any rate, we’re all there, an entire hotel packed with people wearing Steeler black and gold. I wore black and gold too, but mine was a little different, a black cap with the gold Nirvana frowny face logo. A sea of football fans, and me with my Nirvana cap, dark purple nail polish, fifteen tattoos, and my iPod.

My flat-screen tv acts as a second display for my computer, so oftentimes, when I’m talking to guests I type everything in a text box on the tv. I really hate using text-to-speech voices.

So, tonight my friends, Sarah and Celeste were over, we watched City of Ember. It was… bad. Afterward, we talked about the movie, then drifted into other things, books and our book club. Keep in mind, we’re having a conversation, but only my end is in writing.

to me, the film’s an indictment against organized religion, right? there are lots of religious parallels. totally. I never like obvious Christian parallels. like, how they ruined poor Neo. This felt like that. still, obvious Christian propoganda. :-p it’s anti-organized religion, PRO Christian spirituality. like, a better life through faith. faith in the builders, ie God. so, really, as I think about it, it’s possibly pro-practical Atheism. you’re absolutely right. there’s also a 3rd possibility. we’re both astonishingly pretentious. :-p possibly a Space Pussy, maybe. no? Really? Definitely. Nice! I still haven’t read Potter. I’ve been so busy with Dune and all. We still have a club. he’s supposed to send us that other book. but I DID finish, just not THEN. also, at least I FINISH the books, unlike some people. Dune wasn’t cycled because I love the club! 

I type pretty much how I used to talk. When talking in text, I don’t always capitalize things correctly, but I definitely try to punctuate. I really want things to read like natural speech, I can’t give it up entirely.

“I need space to write…” Priscilla Ahn

A writer needs two really important elements for writing; experiences from which to draw ideas and a comfortable space in which to write ideas. I find that no matter my spectacular experiences, or vividly horrible experiences, if my writing space isn’t comfortable, doesn’t feel safe, I absolutely cannot write. Finding that space is so important, and so Goddamn fucking difficult.

I want that space, I need it, but don’t often find it. Living outside that space is astonishingly frustrating after visits that simply don’t last.

I’m not going to post if I don’t have anything good to post just because I want to post something every-day in January. Nope, that simply will not happen. Oh, wait, fuck…

So, last night, my friend, Sarah, my brother, and I went to The Castle for a little goth dancing and such. My brother’s totally not a “Castle person,” but he was down for giving us a ride and hanging out. He definitely didn’t don any eye-liner.

I’m a little in love with The Castle, it’s absolutely never boring. I love the loud techno music, music so loud you can feel it. I love everybody’s Subbacultcha garb. I was all dressed in black, Sarah was all dressed up in black. I love everyone dancing, silhouetted in strobe lighting. I actually do dance, but it’s subtle. My muscles don’t move in any meaningful, or particularly visible way, but they’re there and they do move. So, I dance, I move to the music, all secret-like. I have a little image in my head of how I’d dance, all flowy and stylish. People don’t dance at me, they dance with me, they just don’t usually know it.

Top hat dancer

It’s always interesting how at least one or two people always react to me. A really drunk fellow poked me in the face and said, “what the fuck is that?” I hear that one a lot, I look fake to really drunk people. However, I also heard something totally new, and spectacular. This woman, who was clearly high on something, probably a lot of something, came up and took my hand. She leaned in close and said, “you’re a goddess.” She said, “you transcend everything.” She said, “you’re beautiful.” So, apparently, to the astonishingly high, I’m a gorgeous woman. The word, “goddess,” is kind of amusing because most of my online profiles note that “at night, I’m a disco goddess,” alluding to Nirvana’s Hairspray Queen.

Still, most people aren’t ridiculously stupid. I’m kind of a regular at various clubs, bars and restaurants, so plenty of people know me around. Lately, I’m trying be more outgoing, introducing myself to intriguing strangers and what-not. To that end, I alphabetted to my brother to tell one of the gothy platform-dancers that I thought she was hot. He, however, totally wussed out on my outlandish social gesture. Fortunately, Sarah was completely hardcore enough to do something so bizarre. The dancer ended up remembering me from New Year’s Eve and was happy for the “hello there, you’re hot!” I mean, in my head I’m a fellow who can go anywhere and talk to anyone, but the physical act of doing so has fucked me up for a long time. Before the trache, I couldn’t breathe or speak particularly well. With the trache, I breathe really well, but I can’t speak at all. I’m trying to ignore the bizarre logistics of how I have to communicate. I’m sick of wanting to talk to people, and not actually doing it. So, I alphabet to strangers, give them my card.

Me and Lynn, a Castle regular, and an insanely alluring dancer

That picture probably says everything about what I love in life.

So, I’m going goth clubbing tonight, but I’ve posted every-day in January. So…

Oh, right now, I’m totally your crush with eye-liner.

The photo is from this morning’s trache change. My doctors are always thinking outside the box, so we tried something a LITTLE different…

The pen trache

Okay, it’s really from my favorite scene in Saw V. A fellow’s head is sealed in a glass box, the box fills with water. So, rather than die horribly, he whips out a bic pen and traches himself. It’s such a beautiful little scene, it perfectly illustrates that spectacular moment just after an airway is opened. It’s an instant of euphoria, better than sex. Though, after the airway is nice and secure, the idea is to have sex AND the airway. At least, that’s always my idea.

So, in the morning, in about six hours, I go for my monthly trache change. Usually, I’m really rather nervous about the procedure, especially right before, but this time I feel pretty good. I’m just not particularly afraid. I have to have it done, if I die, I die. There’s really no sense in worrying about it.

I mean, I’m generally less afraid of dying than I used to be, it’s just not as frightening. After December, I’m far more afraid of living, feeling completely lonely, miserable, wanting to die. I don’t ever want to feel like that again. It’s odd to explain. I’m not really afraid of dying, but I definitely don’t want to die. I want to live, and live spectacularly. There are people I really want to know better, there are so many things I have yet to experience. I’m totally capable of everything I want, I remember that now. I’m working toward what I want, and I’m not about to quit willingly. It’s going to take a fatally stupid trache change to stop me, hopefully not this one.

I have plenty more left to write.

Last night, as is now tradition, I went out to celebrate the anniversary of my trach, or as my friend, Monica, called it, my “tracheversary.” The idea is to take what could be a rather odd and depressing day, and turn it into something fun. So, to that end, I went to paint the town red with my assistant, Sarah, my friend, Sarah, and the previously mentioned, Monica.

It was a smaller affair than last year, just us four. The tone was different too, no reminiscing about the hospital, or me almost dying. They didn’t know me back then, so there was really no reason to talk about it, which was nice. I’ve written a lot about those days, but I don’t particularly like talking about them in casual conversation. I’d also never been out with so many people who could do the alphabet. Usually, only one person in a group knows how to do it, so I pretty much only talk that person, and if that person isn’t necessarily good at it, I hardly talk at all. Both Sarahs and Monica are good at it, so I don’t feel lonely around them, it’s nice.

Now, an interlude of pictures…

It’s cold in Tampa!

Monica and Sarah discuss socioeconomic policy.

Monica and I chattin’ it up!

After dinner and what-not, it was time for my fifteenth tattoo. Unless it’s a real art-piece, I don’t like to schedule my tattoos. They’re more fun spontaneous, left to fate. So, last night, after much walking up and down 7th avenue in the bitter cold, visiting four shops, we finally found someone available to etch words into my flesh. We ended up at Doc Dog’s Las Vegas Tattoo Company, a place I’d walked by dozens of times, but had never been. As it turns out, Doc Dog’s is fucking spectacular, everything you could ever want in a tattoo shop. It’s so perfect, not too brightly lit, crazy art on the walls, tattoo needles buzzing everywhere. It was just right for my new ink.

Whenever someone tells me that I can’t do something, my usual reaction is to go and do it anyway, it’s just my way. Doing so always reminds me of a scene from my favorite film, Stay. Sam (Ewan McGregor) is talking to a strung out Beth (Janeane Garofalo). She’s just had a nervous breakdown and has taken a liking to liquor and pills. Sam sees her table-top pharmacy and says, “you can’t drink while you’re taking these,” to which she notes, “apparently, I can.” Hence the tattoo…

Tattoo #15

I really don’t like being told what I can or cannot do simply because none of my muscles work. My decisions are mine, sometimes I forget that, so it’s good to be reminded.

Me and Colt, tattoo artist and all-around badass.

SaveSave

So, two years ago today I got trached. I had a hole cut in my neck, and a plastic tube pushed down my throat. The trache’s great for breathing, I’m alive because of it, but it also ended spoken conversation. Last summer, I tried the Passy-Muir Valve for talking, but it didn’t really work, breathing was really difficult, and my jaw muscles turned out to be gone. I used to talk, now I don’t. I’m used to it, and I’m not. I love the trache, and I hate it. Sometimes I cope quite badly, sometimes quite well.

I’ve been thinking about my last spoken conversation, the last clear sentence I managed before gagging and what-not. I said, “I love everything about you, you know.” And the reply, “I wish I loved everything about you,” or “I don’t love everything about you.” I’m admittedly hazy on the reply, but it was definitely one or the other. Either way, not what I wanted to hear. At least I honestly meant the last thing I ever said. Afterward, though, the idea of bleeding out really started to feel right, that was when I started thinking about it, wanting it. I think a person can only stand so many losses before they break. I sure broke, I’d never felt so completely lost and lonely. 

Looking back, however, it’s a pretty great last conversation. It’s beautifully sad, the perfect turning point, when a person’s story goes horribly wrong. That’s how the writer in me sees things. In the very back of my mind I always figure that if something doesn’t kill me, it’ll be something to write about later. The last two years have definitely given me plenty of material, plenty of amazing and awful experiences to turn into words, and sentences, and paragraphs.

I’m definitely not lonely today, I definitely don’t feel like bleeding in the bathtub. I was broken for a time, died again for a little while, but again, it didn’t take. Apparently, the story of me isn’t over, the characters and plot just shifted. I’m happy to keep writing, with this little tube in my throat.