My Whole Expanse I Cannot See…

I have this little plastic tube in my throat, a trach, so I don’t talk. I haven’t spoken a word in, like, three and a half-ish years. You CAN talk with a trach, but the method doesn’t work for everyone, it didn’t for me, lots of choking and what-not. The last sentence that stumbled out of my mouth was, “I love everything about you.” To which it was replied, “I don’t love everything about you.” After that, the choking quit being worth the talking. I met someone else worth the choking and the talking, someone worth absolutely anything. I wanted to say just, something, some little thing I always wanted to say with the voice in my head, but I didn’t get to, and she’d probably reply similarly to the last time I bothered saying something out loud. So, yes, I don’t talk. Most readers know this, but it’s always good to do a little re-capping.

Anyways, back when I did talk, I liked to sing. I sounded like shit, but I liked singing along with Kurt, Elliott, Aimee. I’m told I at least sang on key. Now, I still sing, just, no sound gets past my lips. This has actually created an odd habit, Since I don’t make any sound, I’ve come to feel like I can sing whenever around whoever, in the car, at concerts, getting wheeled into various operating rooms with my iPod Nano, I’m singing like crazy. I probably look crazy, but it really does help to take my mind off things, getting completely lost in the music. Last night I turned my surround sound really loud and sang at the top of my non-voice. I wanted to not think, I wanted to be wrapped in music, lyrics. Really, I wanted to crush a bottle of Percocet into a glass of vodka, with lime, drink that and see if I woke up someplace better, but settled for screaming along with Nirvana’s Live at Reading concert. Just closed my eyes and screamed soundless screams, trying to make the world go away.

Back in the day, when I breathed through a mask and talked, I had a very unique laugh. When something was really funny I’d laugh without a sound, save for a hissing rush of air blowing out of my mouth. That was it. Now, however, with the Passy-Muir valve, my laugh is something completely different. Apparently, my natural spontaneous laugh is an eerie self-perpetuating, maniacal chuckle that, to put it plainly, sounds very much like Heath Ledger’s Joker. I’m not trying to sound that way, it’s not an affectation. I genuinely sound like the Joker, his conversational chuckle that starts, builds and eerily trails off.

Just listen to the beginning of this video… that is how I laugh.

So, I just rocked the Passy-Muir Valve for about forty-five minutes and it definitely went better than Wednesday’s attempt, and DEFINITELY better than my attempts with my mask. I spoke in complete sentences, though, I feel that I sound quite a bit like Donald Duck, which is unfortunate or spectacular, depending on how you look at it. Even as a duck, I have more to say than I said today.

So, yesterday I tried the Passy-Muir Valve. I lasted 35 minutes and everybody was quite pleased with how I did, but I’ll be honest, I won’t try to spin things, it was really very difficult. I could only actually say a few words and they didn’t come easily. It’s disturbing not being able to do something that I used to do without thinking. I’m told that I just need practice, rehab, but I don’t know. I want to be hopeful, but I find it difficult.

The Passy-Muir people were definitely spectacular, I couldn’t have been in better hands.

So, last month I was contacted by the President of Passy-Muir, Inc, makers of the Passy-Muir Valve. It’s a plastic valve that attaches to traches, hopefully allowing users to talk. Experts from the company are flying in tomorrow morning, people who worked with Christopher Reeve and Pope John Paul II, 45 members of the hospital are coming to watch, I couldn’t be in more skilled hands. Will it work for me? I have no fucking idea. I want it to work, but I’m afraid to want it too much. I’m going in with low expectations, it’s all I can do right now. At least it’ll be over one way or another.

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.

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. 

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.

PetSmart:

• 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.

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, 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.