My Whole Expanse I Cannot See…

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:

Phenergan.

I’m currently taking:

Xopenex (1.25 ml, twice a day).

Cipro (twice a day).

Latex Allergy:

No.

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.

So, first, while reading Choke I learned that I’ve been spelling “trache” incorrectly as “trach” for the last year-and-a-half, which is definitely embarrassing. Speaking of traches, I was supposed to get a new one this morning at 7 AM, but due to a scheduling snafu I have to wait until Friday morning. I hate the waiting, it’s the sort of thing a fellow just wants done and over being that it definitely has to be done…

Lately I feel a claustrophobic, I need high ceilings…

So, I finished Orson Scott Card’s Speaker for the Dead.  Speaker for the Dead is the second book in a series continuing the story of Andrew “Ender” Wiggin, former destroyer of worlds. Because of the nature of space travel and the way time works while traveling at the speed of light, Ender’s a man in his early 30s who has lived for over 3000 calendar years, giving the series quite an epic feel.

I’m not here to talk about the first book, Ender’s Game, which was spectacular, I’m here to focus on this the second book. Speaker for the Dead is really a book about truth and how freeing it can be to live a life in which all secrets are laid bare. A Speaker is akin to one reading a eulogy at a memorial service, but rather than paint deceased in the best possible way, they simply tell the story of a life, factually and impartially. A Speaker tells of everything from acts of kindness to one’s flaws and sins, honestly and completely. Yes, it can be a painful process for those left behind, but ultimately, it allows them to examine their relationship with the deceased and their relationships with each other without lies and false pretenses. It’s beautiful, really. In a way, it’s kind of how I see Ira Glass and what he did for me.

At any rate, read Speaker for the Dead, it’s an amazing experience.

My next audio book is Water for Elephants by Sara Gruen.

My dearest friend and personal assassin, Celeste, is currently between full-time jobs and as such, her freelance web designer business has to pay the bills awhile. Check her out at CheApo Web Design! At least check out her logo, it’s brilliant…

So, a reader pointed out last night that the TAL episode made it to Joost. I have no idea about half the places I turn up, it’s an odd feeling…

I just want to say that everyone involved with the film, Rise: Blood Hunter, owes me $9.99 right now. Obviously, I take some responsibility for the loss of my $9.99, I was bored and a little muddle-headed, but the fact remains that Rise: Blood Hunter is the absolute most boring vampire movie ever made. At least BloodRayne was so astonishingly bad that it was hilarious. I’d take hysterically awful over mind-numbingly dull any day.

Well, I got my hard drive working again! Apparently, the power supply went bad, but the actual data is spectacularly okay. I was able to get ahold of another power supply and everything works perfectly. My hours and hours of ill-gotten media are safe. موقع رهان كرة القدم

Of course, I also spent half of today in the e.r. for what is called a “trachitis.” I got some anti-biotics and on Wednesday I get a shiny new trache. سلوتس

One thing is fixed, another breaks and so goes the balance…

I just DVRed Mrs. Winterbourne and I’m not ashamed.

So, it’s been an odd week, capped off by the death of one of my more important external hard drives. Granted, it’s a drive that potentially had me Hell-bound, but I miss it just the same. One might wonder how a hard drive could hold sway over my immortal soul. Well, back when I was in the hospital, becoming what I became, I was talking to God a lot. He’s not much of a conversationalist, but He’s the easiest to talk to when one can’t talk. So, I was quite desperate not to die and I figured God was a good way to prevent it.

I’m not religious, but I’m also not one who only believes in God sometimes. No, I believe in God all the time. I believe that God is constantly watching and looking for reasons to take me downtown to Chinatown. Our relationship is a little dysfunctional. On the one hand, I totally believe that He has watched out for me on many occasions. I mean, my heart stopped last year, by rights it shouldn’t be beating right now, but it is. The odds were incredibly against me, but here I am. I chalk that up to God. Yet, at the same time, I totally believe that I do things to earn His wrath and wrath I get. For some reason, He always seems to make sure I ultimately end up okay. No, I don’t blame God for every single problem I ever had, but I don’t cross him off the list of usual suspects either.

Anyway, back to the hospital and the hard drive. During one of my talks with God, grasping at straws, I told Him I’d never rip another DVD I didn’t own or download any kind of entertainment I could legally buy. I got rid of everything I had at the time. God was Martin Blank with a gun to my face and I was the guy in bed saying, “whatever it is I’m doing that you don’t like, I’ll stop doing it.” I just didn’t want God to pull that trigger. Well, of course, a year and a half and hundreds of torrent files later, I had over 200 GB worth of movies and tv shows completely contradicting every promise I made. I lost all of it Thursday night. Hopefully, I won’t end up going to Hell.

I just finished Chuck Palahniuk’s latest, Snuff. I’m not quite certain how I feel about it. While reading it, it wasn’t my favorite of his works, yet the last four chapters kind of won me over. Snuff is the story of Cassie Wright and her attempt to break the world’s record for the most sex partners in a single work of pornography, 600 to be exact. The story is told from the perspective of three fellows waiting in line for a go at Cassie and the “talent wrangler,” the woman in charge of the 600 fellow gang-bang.

My first problem was that I just find the sex industry astonishingly depressing, and not in a fun Dawn of the Dead sort of way. Secondly, I couldn’t really like or relate to any of the characters. I suppose it’s a good thing that I have nothing in common with a bunch of porn fiends, but what I usually love about Palahniuk is that I do tend to identify with or feel empathy toward his characters. That said, it’s a short book and the last four chapters are amazing, so I have no regrets.

Continuing with Palahniuk, I’m now reading Choke. I’ve also got an audio book on deck, Orson Scott Card’s Speaker for the Dead.