My Whole Expanse I Cannot See…

So, right now people all over the world are in Intensive Care Units (ICUs) with some sort of respiratory infection. These people usually have some sort of underlying medical condition, Spinal Muscular Atrophy (SMA), like me, or maybe Amyotrophic Lateral Sclerosis (ALS). The doctors haven’t figured out exactly what’s wrong yet, or maybe they have and it’s just really bad, these people are teetering toward respiratory failure. They’re being treated with antibiotics, but maybe the treatments aren’t working yet, or they’re just working really slowly, so of course, these people are scared. They’re exhausted, and scared, and when things start going from bad to very bad, many sign a Do Not Resuscitate (DNR) order, a piece of paper that tells doctors, “If I quit breathing, don’t put a tube down my throat so a machine can help me breathe, just let me die.” These people have girlfriends, boyfriends, husbands, wives, kids, cats, dogs, some even have beloved pet turtles. These people have good lives, but they’d rather die than be hooked to a ventilator. That’s how scared they are of needing a machine to breathe, maybe forever.

I used to be terrified of a vent, but right before I went into respiratory failure a few years ago, when a doctor asked me if I wanted to live, no matter what… I said an emphatic, YES. Since I had that experience, I might tell someone in a similar situation…

I know you’re in the trenches right now, I know you’re exhausted, and depressed, and really scared. Not being able to breathe is honestly probably the worst thing anyone can endure. I’m sure you’re so scared and tired you can’t think straight, and if that’s not enough, you’re in pain too. It fucking sucks, and I know that it fucking sucks because I’ve been where you are right now. I’ve been in the ICU, my lungs all wet and heavy, with pain to make the situation feel like an even more spectacular Circle of Hell. I was terrified of dying, but I was also terrified of living and being miserable. I was afraid I’d never go to another movie, or hop another plane to someplace beautiful, or make love to a woman ever again. I’m sure you’re thinking similarly yourself just now. I know you’re scared that that’s what having to be on a vent will do to you. I was terrified in the same way. I was afraid they’d cut a hole in my throat, connect me to a vent and that’d be the end of everything I ever wanted, still, I let it happen. I stumbled head first into my worst nightmare. You know what though? When I actually got there, it wasn’t that bad.

If you have to be on a vent, let it happen. Go with it. Once you’re breathing right, and you’re not nervous ALL THE TIME, you’ll be amazed how much clearer your head will feel. Once you’re breathing right, you can rest and get your strength back. You’ll start to feel like you again. You can take your pain meds, get lots of sleep, you’ll get proper nourishment, and before you know it you’re back to your old self again. All that bad stuff I was scared of, none of it actually happened, and it won’t happen to you either.

You’re allowed to be tired, and scared, and even pissed off at God if you feel like it, but the one thing you absolutely cannot do is give up. You have a family who loves you and needs you. You have too much to live for to be signing some stupid DNR. Fuck DNRs, you have way too many good things ahead of you, don’t give up on them.

Part of me doesn’t understand why I’d have to write that at all, why a person wouldn’t fight for absolutely every second with the people they love. I have, and I know I will again, and I know that one time I’m going to lose no matter how hard I fight, but I’m going to fight it out anyways. In my heart, I don’t understand why people give in.

Intellectually, I know that society as a whole isn’t particularly encouraging on the subject of living with hoses and tubes. People don’t even like to talk about it, they just know it is awful. In pop culture, films like Million Dollar Baby tell people suicide is definitely the way to go. The Diving Bell and the Butterfly shows people this fellow whose life is tragic and beautiful in a sad sort of way, this fellow who ultimately dies in this horrific, yet noble fashion. Because, you know, we disabled people with hoses and tubes are all tragic, and sadly beautiful, and noble. It’s based on a true story, but it’s unfortunate to me that it’s the only kind of story that seems to sell. Oh, and that doctor who saved me, a few minutes before he told my mom to let me go. He said, “He wouldn’t want to live like that,” and in a moment of exhaustion, she thought maybe he was right. Fortunately, I was awake, and my mom told this doctor that it wasn’t up to her.

I know DNRs can be valid, terminal illness is going to end badly one way or another, but I think far too many people sign them under the false perception that breathing through hoses and eating through tubes is a fate worse than death. The medical system isn’t exactly nurturing on the subject. No doctor ever sat down with me and talked about how life would be very different, but I could still be me again. Doctors tend to have very low expectations in this situation. I just happen to be ridiculously stubborn, which kept me going.

The thing is, it’s really not the end of everything, technology and supports can provide a good life. Computers offer communication, ventilators are totally portable and reliable, restaurants will absolutely blend food that can be sucked into a syringe and pushed into a feeding tube. I eat out all the time, I have a glass syringe that feels swanky and eccentric. It’s not eating like it used to be, but the conversation with whoever I’m with is always good, and I’m still satisfied at the end. I travel. Last Summer, a friend and I, and an assistant, took a train to New York City. We spent a week in Manhattan. I get to fall asleep at night with the woman I love, with this woman who loves me and would never want me to quit fighting to come back to her. Nobody told me any of this was possible, I just knew the things I still wanted and I didn’t stop until I had them. The things that I want now, I’m going to chase them down too. Who knows if I’ll have them or not? I don’t know, but I believe they’re possible. That’s the story I’m pushing, a story of ultimately believing blindly in possibilities, a story of trying everything, no matter the degree of stupid or crazy.

This life isn’t always easy, sometimes it’s absolutely fucking difficult, but I don’t regret telling that doctor to do whatever he had to do. I don’t think a person should throw away their life because they’re afraid to experience something they’ve never tried, afraid because nobody ever tried to tell them that living could turn out awesome too.

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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. 

Whenever Sara’s cat gets into something he shouldn’t she says, “no, not for kitties.” So, whenever I see a movie, particularly horror, that I know she wouldn’t like, I say, “no, that’s definitely not for Saras.” Normally, that phrase isn’t necessary for me. Movies and books don’t scare me, they don’t bother me at all. However, I wish to God somebody had said that to me before I watched The Diving Bell and the Butterfly. At this point, anyone who hasn’t seen the movie and doesn’t want to know the ending should stop reading right now.

To put it bluntly, The Diving Bell and the Butterfly fucked me up like nobody’s business. Diving Bell is the true story of Elle editor Jean-Dominique Bauby, a man entirely paralyzed save for his left eye after a stroke. Much of the film is shot in the first-person, looking at the world through his eyes. Waking up in the hospital, the initial sense of confusion and utter disconnect, the realization that he can’t speak, the frustration of not being able to communicate, the loneliness and isolation, it’s all there and it’s captured perfectly. Too Goddamn fucking perfectly. It was like watching a gag-reel of the spectacularly worst moments of my entire life. It’s amazing how I’ve thought the exact same things as him in certain situations. I’m better off than him in that I can use a computer and when I woke up two Januarys ago, I definitely wasn’t surprised I couldn’t walk. Still, we share so many other experiences. Of course, there’s one experience we haven’t yet shared, he’s dead and I’m not. Right when he starts to get a little bit comfortable, right when he’s perfected the use of eye movements and the alphabet to communicate, he’s hit with pneumonia and dies. One evening he wakes up coughing, mucus pouring from his trach site. It’s such a disturbing image and I can’t seem to shake it. I actually started coughing while writing this, needed a suction really badly and immediately saw that image. It was like watching how I’m almost certainly going to die. I’m going to have some kind of acute respiratory failure and no vent or medicine will be able to help me. I’ll drown, I’ll suffocate, I’ll die. That movie gave me a bunch of images to go along with things I already worry over.

Obviously, I’ll get over it, Diving Bell will fade some, but not yet. I wanted to drown it out with brandy, but I know that is the worst possible thing to do. I’m better off writing and getting things done. That is exactly what what I’m doing.