My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

Ti-r-ed

May 23rd, 2015 | Category: Life

I’m tired, kind of down. I went to a movie and freaked out, heart pounding, struggling to breathe. I calmed myself down, but that sort of thing hasn’t happened since… pre-2005.

I’m uneasy.

1 comment

Magnolia/A weird memory

June 04th, 2011 | Category: Life,Opinions,Thoughts on Music

So, I  watched Magnolia earlier, I really forgot its complete brilliance and beauty. It’s a long movie that doesn’t feel long, basically a series of interconnected stories, themes like, the past repeats itself, mistakes and regrets aren’t unique to the individual. It’s a fast movie in that the cuts between stories are quick, it doesn’t linger on one character’s life for too long. There’s also a lot of camera movement, not shaky Cloverfield camera, just lots of panning, zooming. The cuts and the camera give Magnolia a very fast-paced frenetic feeling, even though its thirty minutes shy of three hours long. It’s also a movie about really fucked up people, people dying physically, emotionally, people whose stories do and don’t work out. I was watching with a friend and she asked, “Are people really like that?” I didn’t feel like putting down the words, I just eyebrowed a “yes.” There’s a scene with Philip Seymour Hoffman, he’s a Hospice nurse trying to track down this dying fellow’s estranged son, trying to fulfill a final request. His son, played by Tom Cruise, turns out to be a pretty famous, pretty vile, motivational speaker, teaching loser guys how to have lots of sex with lots of women. So, Seymour Hoffman’s on the phone talking to one of Cruise’s underlings and says something to the affect, I know this is something like a scene from some movie, but I think movies have scenes like this because this actually happens. I mean, that’s so much of why we go to movies, because we identify with what we see, or we want to do or be what we see. I answered my friend with a “yes” because my experiences have been so much like the characters we were watching. Depression, loneliness, addiction, loss, regret, I know those experiences, felt them, feel them, been drowning in them. Yes, people really are “like that.”

Magnolia’s soundtrack is another reason I love it so much, Aimee Mann contributed most of the songs, specifically written for the movie. One particularly unusual, very moving scene, cuts to each character singing Wise Up. My favorite line, “You’re sure there’s a cure, and you have finally found it. You think one drink will shrink you ’till you’re underground and living down, but it’s not going to stop, it’s not going to stop, it’s not going to stop ’till you wise up.” It’s very surreal, but the scene totally works. It hit me really hard, I broke-down, sobbing. I breakdown quietly, nobody ever notices. Almost nobody. Listening to Aimee’s lyrics, crying, it reminded me of something.

It was four years ago, I was with Sara, my girlfriend then, kind of. We’d broken up, but started finding each other again toward the end of shooting our This American Life episode. So, she wanted us to go see a Chris Isaak concert, and I just wanted to go anywhere with her. The trach was still a little fresh back then, I’d still get nervous going out sometimes, so I’d have wine or brandy before getting into the car. Not the best way to cope, but it worked awhile. I didn’t want to not take her, I didn’t want to be weird and nervous, I just needed the crutch to get there. It wore off and I realized I was okay because I was with Sara, everything was always okay with Sara. So, we’re leaving the concert, which was great, we’re walking back to the car under a summer night-sky. I look up at the stars, bright beautiful stars. I didn’t want to be anyplace else, just right there, under those stars, with Sara. As we’re walking she takes my hand and out of nowhere starts singing Aimee’s You Do, off the Magnolia soundtrack. And you do, you do, you do, you really do… I never thought I could love her any more, but holding her hand, listening to her sing under those stars, I did, and I felt so completely loved. I quit the pre-outting drinks after that night. I didn’t need them, and we went so many more places together. We held each other and sang so many more times. Losing her hurt so much.

I never thought I could find again what I felt with Sara, but I did, so intensely, so beautiful, but that’s gone too. Losing Monica hurts so Goddamn fucking much. I don’t know how to be okay.

2 comments

Quitting people

October 13th, 2008 | Category: Life,Random Thought

I’ve quit many things, sitting up, breathing without machines, various narcotics, talking. Really, none of it terribly difficult overall, not compared to, say, quitting people. I mean, physical losses are pretty easy. I cannot talk, that’s just a fact. There are other ways to communicate, one adapts. It’s difficult at first, but facts are facts. A fellow can’t expect to live on narcotics either, just watch Most High or A Scanner Darkly and it’s obvious to see where that road ends. So, fine, narcotics, done.

However, quitting people, or a person you honestly love more than any drug, more than your own voice, it’s something I just don’t know how to do, and might never know. That idea is a little frightening. Quitting a person’s so entirely different, there’s no way, that I’m aware, to intellectualize or rationalize it. I mean, I know it’s been done, and that sometimes there’s absolutely no way around it. That’s a very rational line of thought. Still, when looking up at a clear night sky and thinking about that person, rationality jumps from a little metaphorical window and says, “fuck you,” on the way out.

6 comments

Tattoo #9

July 29th, 2008 | Category: Life,Tattoos

Yesterday I got my ninth and most ambitious tattoo. It’s the most ambitious because unlike the other eight, I cannot really hide it. The others are on my arms and legs, two on my torso, all easily hidden by clothes. This new one, this one I cannot easily hide. It’s on the top of my right hand, a big red poppy.

I got it for a few reasons, I’ve definitely wanted it for awhile. The main idea being, I really like opiates, I used to like them far too much. I completely understand why people pick them up and never put them down. In many ways they’re beautiful, they help you feel absolutely fucking perfect no matter how astonishingly bad reality gets. I don’t care what anybody says, sometimes you need that feeling of safety, that peace. When the entire world goes dark, a little light helps. Back when I was really sick and really terrified, really alone, when everything I ever feared happened all at once, opiates were like a nice warm blanket, a kiss from Sara, a hug from God. I don’t at all regret or apologize for taking that comfort. Try living that nightmare and tell me I did the wrong thing. However, after some time, you have to stop hiding and face the darkness. Eventually, that thing that is so beautiful will hurt you.

This tattoo, a tattoo I cannot easily hide, is beautiful, but after not too long it definitely hurt me.

5 comments

Front Page News

July 27th, 2008 | Category: Life

Sara’s second article is in the Boston Globe, but this time… it’s on the front page! She’s so ridiculously badassed…

2 comments

Inspiring?

July 13th, 2008 | Category: Life

A reader recently wrote…

“I wonder sometimes how you feel about being an inspiration. Because you are, as many have noted (including myself).”

I’ve actually been thinking about this and wanting to write about it for awhile. I understand that people think my life is admirable and that I’m brave, but I feel oddly about it. I mean, if my life and the way I write about it helps people, I’m glad, but I’m not trying to be inspirational. I look at myself and I see a list of flaws a mile long. As I think about it, the idea that I inspire people, I’m trying to figure out why it bothers me. I guess there are a few reasons. I feel like people admire me for things that I’m not. People tell me that they love my “positive attitude,” like I’m some sort of motivational speaker, but honestly, I’m naturally melancholy. I’m a little dark, sometimes I’m a lot dark. Sometimes I feel like Aimee Mann is absolutely fucking right about everything. Sometimes I feel like she’s writing about me. 

but you sit there in the darkness, 
and you make plans but they’re hopeless
Another favorite:
So here I’m sitting in my car at the same old stop light 
I keep waiting for a change but I don’t know what 
So red turns into green turning into yellow 
But I’m just frozen here on the same old spot 
And all I have to do is to press the pedal 
But I’m not      

People are tricky you can’t afford to show 
Anything risky anything they don’t know 
The moment you try – well kiss it goodbye 

I have felt just like that so many times. Wait. Before we go any further, I have to say right now, the core of my melancholy isn’t solely from my disability, I definitely don’t want people thinking that, that answer is way too easy. I’m not that archetype. My disability causes obstacles, definitely, but my frustrations are more born from difficulties that I have getting around things that are in my way. I don’t lie around wishing that I could walk, it’s more that I just want the workarounds to be easier. My family’s just as fucked up as anybody’s, but for as long as I can remember, being disabled has been a non-issue. I was never told that I’m “special,” nor was I raised with the idea that being disabled means that I’m expressly limited or broken. I wasn’t raised with the saccharin-sweet idea that I can do “anything,” but I was also never told that couldn’t do things. My disability just has certain facts. I can’t walk, or drive a car, or play football, but so? There are a million other things to do. I grew up with the idea that I can always try just about anything, though I probably have to do it differently. So, if I am melancholy, unsure of myself, it’s more because of general anxiety than me being disabled. So, I hope we have that straight.

At any rate, I’m definitely not one with an eternally sunny attitude. I’d feel better if I didn’t get complimented for it. I am drawn to dark music and fiction for a reason, and that reason sure as shit isn’t because I’m constantly chipper.

I’m not perfectly brave either, but I feel like people think that I am. I’m nervous and uneasy as often as anybody. I’m scared every time I cough a lot. I’m scared before every trache change. I’m scared because so many of my thoughts go unsaid. I’m scared of dying. I’m scared there’s a Hell and I might go there. Sometimes I’m scared to leave the house, or even sleep. I don’t feel particularly heroic. I was so freaked out after seeing The Diving Bell and the Butterfly that I drank a bunch of brandy and passed out. That definitely wasn’t the brave thing to do.

Now, here’s the tricky part. I’m melancholy, prone to reverie, doubtful, fearful, yet I’m also endlessly hopeful that as bad as anything is or feels, there’s a chance it will get better. I’ve experienced some spectacular things, so I totally know that life can be amazing. Good experiences are like heroin. I’ll endure a million bad experiences just for the chance to have things that I know are incredible. Something inherent in me keeps me chasing that fix. No matter how down I feel sometimes, I can’t quit. I’ve hit bottom so many times in the last two years, but whenever I hit that dark place, something about me lights up and I go again. Maybe I’m just an addict to anything that gives pleasure. I don’t entirely know. I just know that if I want to see Europe, or wake up next to Sara every morning, yeah, deep down, I’m willing to die for the chance. One can just as easily die living a life they don’t want.

If I come off as inspirational, that’s fine, but it’s also not intentional. I just want what I want. I’m flawed, I break, I adapt and I keep going. That is how I want people to see me.

4 comments

Morbidly Obese

July 12th, 2008 | Category: Life,Random Thought

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…

Pre-peg

Post-peg

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

1 comment

Diving Bell: The Interactive Experience

July 12th, 2008 | Category: Life

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. 

6 comments

It’s the 4th

July 04th, 2008 | Category: Life,Random Thought

So, today’s the Fourth of July, another June has gone by.  When they light up our town I just think what a waste of gunpowder and sky…

That is the beginning of the saddest, most grammatically correct song ever written about the Fourth of July. It’s one of my favorite Aimee Mann songs. Last year, Sara and I were broken up for the Fourth. We broke up before the holiday, but that song was actually playing when she said her good-byes. Things are much better this year. We’re separated again, but only by physical distance. It’s weird, I’m not sure how to word this right, maybe I can’t. Being apart like this is a painful experience, I miss her on some level all the time, but it’s not an empty pain. It’s a pain that promises something better. It’s almost like getting a tattoo. It’s a constant stinging pain, but when it finally stops, you’re left with something beautiful. It’s a pain that’s a prelude to something that you know is worth anything. It’s not a loss, not an emptiness. It’s not Hell unending, the complete and total absence of God.

Life’s really not easy, but I think it’s always worth the trouble in the end. Happy Fourth…

3 comments

Various things

June 29th, 2008 | Category: Life,Opinions,Random Thought

I’m fairly behind on things I mean to write, thoughts back up fairly quickly.

Apparently, I blacked out or something because Aimee Mann released a new album at the beginning of June and I totally missed it! Sara and I were hanging out and listening to music during which she asked, “hey, have you heard Aimee’s new stuff?” To which I typed, “omg! is it out???” Her new album, @#%&*! Smilers, is out and it’s fucking awesome. It’s full of pianos and keyboards, incredibly sad songs that often sound very happy. I kind of can’t stop listening to it, for a few reasons. First, it’s just amazing. It also makes me feel a little closer to my Sara. I haven’t written about it, I don’t really feel like writing about it. Sara’s in Boston for work, I’m here in Tampa until I can go North. It’s weird being so far apart, it’s definitely not something I like. I miss her more than Fentanyl, more than my own voice. I’m not exaggerating for affect, I mean it entirely. At some point, every single day, I miss the spectacular emptiness found in Fentanyl and I miss talking. Not all day, mind you. Just a moment or two. I just miss Sara more. We broke up once, which was bad, but it wasn’t because we didn’t love each other, and she still lived five minutes away. We weren’t “together,” but she wasn’t so far away that geography kept us apart. This is very different. Anyway, she visited last week, it was great. We laid in bed, listening to Aimee, just like I’m listening right now.

Wanted was an astonishingly bad movie. I mourn for my $9, I mourn for my 2 hours, I mourn that the movie exists at all. Honestly, I like crazy over-the-top violence. I loved Shoot’Em Up! I just could not buy Wanted. The dialogue was flat, the characters boring, and the film’s world was NOT conceived well enough to make me believe that bullets can curve. I don’t give a fuck how you flick your wrist, a bullet will not travel in a 360 degree angle outside The Matrix.

WALL•E was a beautiful movie. I thought Pixar might have peaked after Finding Nemo, but I was wrong. WALL•E is gorgeous and melancholy, but hopeful at heart. That pretty much sums me up, melancholy and hopeful.

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