My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

Archive for June, 2008

Slow day…

June 30th, 2008 | Category: Life,Random Thought

It’s kind of a slow day here in Tampa. I intended a more interesting day, but sometimes schedules break no matter what a fellow does. It’s a little disturbing in an existential kind of way. I have way too much time for idle thought, so when plans and schedules break I always have an hour or so of, Fuck it, things happen no matter what I do. Why bother planning ANYTHING? Then, of course, I stop being ridiculous and I do something else. I get frustrated, more so now, because before I do anything from errands to a movie, I commit everything to paper. The plans go on a calendar, then I write out rather detailed notes about the specific things I want to do. I try to think as far ahead as possible. I don’t write in a rough or demanding tone, I try to write how I would talk. I could be more abrupt, or generic, or short, which could definitely save me typing time, but I just don’t feel right doing so. So, I write things like…

So, today we’re going for a nice breakfast at Pach’s Place. Then, we’re off to PetSmart to buy… a fish!

This is going to seem crazy, but while we’re out, everywhere we go, I want you to take pictures, lots of pictures. Pictures of me at places, the places themselves, food we order, nice people, anything interesting. If we photograph a person, ask if it’s okay, tell them I’d like to potentially use it for a blog and give them my card. The camera’s in my J.Crew bag, the cards are in my wallet.

Speaking of my card, I want to give it out like crazy, especially at places I’m a “regular.” Give it to friendly servers, managers, bartenders, valets, anybody who’s generally nice that we meet.  We’ll start today and refine the process.

In the side pocket of my J.Crew bag is a little black notebook and a pen, I want you to write down the letters when we do the alphabet. 

Before we go, clip my Shuffle to my right wrist and do the headphones in the van. All my iPod stuff is in the Crown Royal Bag in the armoire. Ask me about the volume level, I want it soft enough so we can still talk.  Also ask if the headphones are in right. 

Things to bring:

• J.Crew bag

• Suction

• A glass syringe

• Battery (a fresh one)

• A wash-room device (keep it in the J.Crew bag just in case)

• Nirvana beanie cap

• iPod Shuffle+Headphones

Pach’s Place:

• Bowl of grits with maple syrup and an empty bowl

• Cup of hot water

• Cup of black decaf

• Tell me their juices

• Anything you like

Just take some grits and mix them in the empty bowl with some hot water.


• Betta fish kit

• Betta fish

Let’s put the fish somewhere by my tv.

When we’re all done, just rinse the suction and syringe, put stuff away, and charge the battery.  Make sure that you don’t forget to bring in the hose, they get squishy in the summer heat.  You totally rule!

The general events go on a printed and online calendar, then I write the specific notes and print those. Two things tend to vex me, probably a little more than they should. Obviously, big things like today are troubling, “Oh, I didn’t realize you’d need the van so early. I didn’t read everything you wrote.” That’s… frustrating. It also drives me crazy when I write these missives and people flat out miss things on the list. My assistants are definitely better about the lists (hi assistants!), but others… I could write, “and I definitely want to wear my Nirvana baseball cap,” fifty times and that cap wouldn’t end up on my head. On the other hand, I’m absolutely elated when what I write gets followed, I get such a bang out of it. It quells my existential fear that nothing I do really matters.


Water for Elephants

June 29th, 2008 | Category: Opinions

I recently finished one of my audio books, Water for Elephants by Sara Gruen. It’s not quite my usual fare, but I did enjoy it. The story is narrated by Jake Jankowski during two points in his life, age ninety-one, or ninety-three (he’s lost track), and as a young man of twenty-one. At ninety-one, or ninety-three, Jake’s relegated to finish things out in a nursing home and he’s not particularly happy about it. Jake’s not content to eat pureed goop and stare passively at the world outside his window. In his younger days, Jake led a rather interesting life. Just before college graduation at the age of twenty-one his parents are killed in a tragic car accident. This is bad enough, until Jake discovers that his parents took on a massive amount of debt to pay his college tuition at the Cornell University school of veterinary medicine. Jake has no family, no money and no home. The car accident and the bank claimed everything respectively. Devastated, and absolutely flat broke, he drops out just before exams and, not quite thinking clearly, hops a train bound for God knows where. The train belongs to a rather dubious depression era traveling circus, full of shady characters and cheap booze. A traveling circus that just so happens to need a vet.

Water for Elephants isn’t a complicated tale. It’s a story of loss and romance, of misfits down on their luck with no place to go. Gruen does a spectacular job at painting vivid images with her prose. One can see the dingy train cars, the raucous midway, Jake’s lonely nursing home bed. Though dark quite often, the book isn’t totally bereft of hope. Jake might not be entirely lost, not quite knowing how many years are behind him. It’s definitely worth a read.


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.



June 25th, 2008 | Category: Life,Opinions

I’m reading quite a lot lately, e-books always preferable to audio books. Unfortunately, many of the books I want to read most aren’t available as e-books, or even audio books. So, last week I started e-mailing my favorite authors to see about getting ahold of their works that aren’t currently available. One such author is Jeff VanderMeer, the fellow behind one of my top 5 favorite novels, Veniss Underground. Veniss is published in multiple e-book formats, but the same isn’t true of any of his other work. Well, it turns out that Jeff had already seen me on This American Life and was more than happy to send me City of Saints and Madmen and Shriek: An Afterword, his other two novels. He also asked if I might be interested in doing an interview with Omnivoracious, an book blog…



June 25th, 2008 | Category: Life,Opinions

So, I recently finished reading Choke by Chuck Palahniuk and it totally reminded me again how brilliantly Palahniuk can write. Though, it being one of his earlier works, I also worry that his best stuff is behind him. Palahniuk has an amazing knack for creating complete lunatic, fuck up, low-life characters who are still likable and relatable. At least, I find them relatable. Choke’s protag is Victor Mancini, a sex-addicted liar who may or may not be the Second Coming of Christ. Victor’s a med-school dropout working as an indentured servant at an historical theme park. His mother’s a senile social anarchist who spent most of his childhood in and out of prison, kidnapping him from various foster homes. If Victor’s not busy having sex with women from sex addicts anonymous, he’s pretending to choke at local restaurants. His saviors befriend him, hear his troubles, they send him money. Victor needs the money, indentured servant, sex addict, med-school dropouts don’t pull down enough to keep their moms in high-end nursing facilities. Victor also likes the idea that he gives people a story to tell, that he creates heroes one meal at a time. At the nursing home, the demented old women mistake Victor for men who wronged them in the past and he cops to every sin from incest to dog murder. It’s much easier for Victor to be someone else, with each confession providing closure until senility reopens the wounds. Victor’s best friend, Denny, another sex addict, collects rocks for every-day he doesn’t masturbate. He says he wants his life to about something rather than be about not doing something one day at a time. Still, the rocks are just a fix for a fix.

Palahniuk likes to write certain themes into every novel, like, losing everything to truly appreciate anything, or how hitting absolute rock bottom simply means there’s nothing left to fear, both of which I love. He also writes a great deal about things being just a fix for a fix. One addiction to fix another. Denny and the rocks. Victor taking responsibility for so many sins just to feel needed. I really understand such themes and I feel better knowing that other people have that same understanding. I think about the idea of a fix for a fix quite a lot, ever since the hole in my throat and and the tube in my stomach. The trache fixes my breathing and takes away my voice leaving thoughts and worries to fill my head until I can’t sleep, until I miss every drug I ever had. Brandy to slow everything down. Reading, watching movies, writing as much as possible so the brandy doesn’t feel necessary. Amazingly hot soup, astonishingly hot coffee, fantastically cold cereal go into my feeding tube because eating has become more about sensation than taste. The oral pleasure of sweet cocoa replaced by the sensual pleasure of heat from steamed soy milk as it passes through a tube to my stomach, to my chest, to my face. Fixes for fixes. Palahniuk’s writing, especially in Choke, Survivor and Invisible Monsters is so spot on as to make things that I think about more clear and less frightening. I feel less alone. 

Definitely read Choke, it’s darkly hilarious and quite provocative.


So beautiful…

June 20th, 2008 | Category: Random Thought

She’s so beautiful, I can’t type, or think. I’d forget to breathe if I didn’t have a machine to remind me. In that moment, looking at her looking at me, there’s no fear or reverie. Melancholy doesn’t exist. She’s brandy, she’s morphine, she’s everything. She’s divinity on earth, her gaze is utterly too much to bear. In that moment, dying for another person makes perfect sense. Let the zombies take me, my throat for hers. She’s my fix for every fix. I love her more than I have the skill to write.


Backgammon or Chess?

June 19th, 2008 | Category: Life,Random Thought

I’ve become a little addicted to and fairly good at backgammon and chess, particularly the versions found in Freeverse Software’s Big Bang Board Games. So, any Mac users interested in throwing down for a game or two should download the games and send me a message. 

Oh, by the way, you can now Digg my entries.

Comments are off for this post

The funny

June 17th, 2008 | Category: Opinions,Random Thought

I’ve just decided that the Daily Show is definitely the funniest thing on tv and I’ll fist-fight anybody who says otherwise.



The Globe!

June 16th, 2008 | Category: Life

My Sara is officially a Boston Globe published badass…


Can you say, God Complex?

June 15th, 2008 | Category: Life

So, Friday I went to the hospital at 6 AM for a trache change. I have to get a fresh one every 6-8 weeks. I absolutely hate this process, any procedure involving my airway makes me nervous. Every time I get this done, something goes a little wrong, or more than a little wrong, so I decided to write a detailed set of instructions, kind of a “Michael Manual.” I put 10 copies of the following into 10 red folders…

Hi there,

So, you’ll be be part of a team taking care of me today.  I would definitely hate to die, it would ruin my day.  I don’t speak, but I’m quite smart and I understand everything but math.  I’m totally bad at math.  Please talk to me and ask me questions directly.

My underlying Medical Condition:

Spinal Muscular Atrophy.

I’m allergic to:


I’m currently taking:

Xopenex (1.25 ml, twice a day).

Cipro (twice a day).

Latex Allergy:


IV placement:

I have veins in my hands and arms, but I’m a very difficult stick.  I usually just get an EJ.

Communication without my computer:

For quick communication I use the following facial gestures (ask me to show you each gesture):

Eye brows up: Yes.

Eyes closed: No.

Crazy blinking: Help, something’s really wrong, I probably can’t breathe.

Fish face: I need a suction.

Left eye closed: I want to use the alphabet.

Use the facial gestures for quick communication, however, if I want to say something specific or if you have a specific question, we will use the alphabet.

Using the Alphabet:

Say each letter one at a time, A to Z.  When you reach the letter I want, I will raise my eyebrows.  In this way, we’ll spell words.  It helps to write down each letter.

My BiPap and Battery:

My BiPap connects to a battery with two clips like jumper-cables.  Red connects to red and black to black.  Black must always connect first and disconnect last, or a fuse will blow.  In the OR and in recovery, connect the BiPap to a wall-outlet and disconnect the clips.  If the clips aren’t disconnected, the battery continues to drain.

My piercings:

My eyebrow piercings do not come out, just cover them with tape.

In the Recovery Room:

When I wake up, I will definitely need suctioned, both my trache and mouth.  I might also need air in my trache cuff.  Please talk to me and make sure I’m okay.  When taking my blood-pressure, use a pediatric cuff on my leg.  I also get a dose of pain medicine, either Demerol or Morphine.  I take the small allotted dose ordered by a doctor.  My mom and Celeste Nelson are out in the waiting-room, please send for one of them as soon as possible.

They were neatly organized red folders and the plan was to give one to anyone caring for me. It’s the most prepared I’d ever been for the hospital. I covered just about everything, right? I had a solid plan, right? Apparently not. Apparently nobody really wants to read a little manual.

Things go bad in pre-op. The anesthesiologist, a Ralph Robertson, says to my mom and Celeste, but not to me, never to me, that he’ll be putting me under with gas. My mom explains that I don’t want gas, that I always get an EJ (IV in my neck). I spell out that I use Propofol, an IV anesthesia. My mom calmly explains that I’m not comfortable using a different anesthesia without at least researching it first. At which point Captain Knock-Out launches into, “Oh, I’ve just had 25 years of experience caring for patients, I’ve worked with little 9 gram babies, but I guess you know better.” I think, “Oh, God.” My mom says that she doesn’t doubt his experience and ability to care for patients, but that I still don’t feel comfortable using a gas, especially since I hadn’t been informed about it until 3 minutes before the procedure. He says condescendingly, “Oh, so he’s more comfortable with a needle in his neck than going to sleep with a nice gas? That is your idea of better care?” We all emphatically say yes. This continues until after a bit, he seemingly relents. I know he’s not sincere, but we’re on our way to the OR.

That walk from pre-op to the OR is always exceedingly long and astonishingly short at the same time. I’m always afraid, afraid I’ll go to sleep and not wake up, afraid I’ll never see Sara again. I always tell God I’m really not ready, that I have more to do. I always make myself promises, things I’ll do differently if I end up okay. I never keep all of them, but I make them just the same.

We get to the OR, the light is bright as day. Mr. Anesthesia whispers something to a nurse and I think to myself, “Oh man, he’s going to start some shit.” He tells me he’s just going to give me some oxygen and get my IV ready. This seems reasonable, until he disconnects me from my BiPap and connects me to a vent. A vent that isn’t set right at all. My breathing is very shallow and difficult. I frantically blink and try to signal to somebody, but nobody notices. Then I get very sleepy, I get that warm feeling in my face that I usually love so much. I’m being drugged, but not with an IV. There’s no needle in my neck. I think, “that fucker did it anyway.” I fall asleep frightened, not enjoying my drugs at all, not knowing if I’ll wake again.

I do wake up in recovery, but I can’t breathe. My eyes aren’t quite open, but I hear a fellow say, “no, I think you just turn it on.” They’re talking about my BiPap, apparently they have no idea how it works. Once they get that settled and I’m breathing properly, I get my shot of Morphine for pain. Usually, Morphine feels like Christmas, like the entire world is absolutely perfect. Morphine is like kissing Sara. Yet, that day in recovery, absolutely nothing is perfect. I can’t relax. I want to see someone familiar, my mom, Celeste, somebody. Nobody is called. I develop an irrational fear that my battery will go dead and nobody will notice. My thoughts race. Have the clips been on the entire time? How long have I been using the battery? What if this battery is the battery that died an hour early on the plane to Boston? Is my battery beeping? God, I wish mom and Celeste were here. Please let me go home. Please let me see Sara again.

When I finally get back to my mom and Celeste I tell them about the vent and the gas. We demand to speak to a supervisor and the anesthesiologist. Ralph tap dances and won’t give any straight answers. He won’t even look at me, let alone talk to me directly. He actually claims that he didn’t realize that we agreed on absolutely no gas and that he still gave me the IV first, I just didn’t notice. That’s right, he still put a needle in my neck. I immediately think of From Dusk Till’ Dawn when Pete shouts at Richie, “you fuckin’ liar!” He hooked me to that vent and I went down like a Times Square hooker. You don’t miss getting a fucking needle in the fucking neck. I’ve had it done several times and remember each time vividly.

That is my problem, I remember everything too vividly. I feel things too much. It’s why I can’t relax, can’t sleep.


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