My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

Archive for July, 2010

Tattoo #39: The end of Tattoo Crisis 2010

July 31st, 2010 | Category: Life,Tattoos

Tattoo by Fish, Las Vegas Tattoo, Ybor City

So, this is how I ended Tattoo Crisis 2010, this is how I fixed what was quite possibly the stupidest typo of all time. This is the finished version of my thirty-ninth tattoo. I mostly think of this tattoo as a reminder to think things out before I go and do something dumb. I was really pretty down when I got the idea for it, thinking about how people who seemed so important to each other end up apart, never talking to each other again. Like I said, I was really pretty down.

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When the zombies come: Opening doors

July 24th, 2010 | Category: Life,When the Zombies Come

I have this spectacular assistant, Stacy. Stacy show’s up a little early, works late when necessary. She’s excellent at talking with the alphabet, she does little things I need before I ask, she always follows the notes I write, follows them perfectly. I like saying to her, “You’re a professional.” She’ll perform any task given, with grace, and class, and… Well, almost any task. She prefers not to open doors. Like, if we’re at the mall, or a restaurant, she’ll always try to let anyone who’s near go ahead and open the door. Nobody ever shuts the door on us, someone always holds it. Someone always holds the door for us, for now, but what happens when the zombies come? Not if, when. So, I asked Stacy when I was making fun of her for not being a professional about opening doors, I asked, “What are you going to do when the zombies comes?”

The zombies are coming, maybe not right now, or tomorrow, or in ten years, but they are coming, and when they do come we will no longer be a “Everyone holds the door open” society. It’ll be a free-for-all on getting through and closing that door behind you. Parents will immediately abandon strollers in favor of those baby backpacks. It’ll be babies in backpacks, and doors being slammed shut, and blood, and screaming, and zombies, and chaos. That’s how it’ll be when the zombies come.

Tonight, Stacy purposefully opened two doors for us by herself. She really is a professional.

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If you’re thinking about a DNR…

July 22nd, 2010 | Category: Life,Opinions

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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Like lightning

July 22nd, 2010 | Category: Creative Flash

She leans over and kisses you, and it’s like lightning. You close your eyes and fall into her, or she falls into you, or maybe you’re falling into each other. You close your eyes, her lips touching yours, and the world doesn’t go black, you’re not wrapped in darkness. You’re wrapped in light, white blinding light, complete, and radiant, and so right now. You’re enveloped in this radiance, totally fucking lost in it. Her lips wrap around yours, yours wrap around hers, and with every touch the light gets hotter, even more total. Your lips brush her cheek, her neck, she grabs at your hair, pulls harder with every kiss.

Electricity flies through her and into you, burning away all the fear and loneliness that’s been enfolded around your heart for so very long. Every nerve in your body is alive and screaming. The current from her touch runs down your spine to the tips of your toes, and for this series of perfect moments you know what it’s like to feel truly happy, truly in love.

You’ll fall asleep holding her close, dazed from feeling what it’s like to be struck by lightning

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Write, Goddamnit!

July 18th, 2010 | Category: Life

I’m just going to write the thoughts in my head because I need to start writing again, and anything is probably better than nothing. Unless the anything is a bunch of boring stuff that’s really boring, so I’ll try to avoid that…

Right now, I’m thinking about someone, two someones. I’ve been in love with someone for a long time, for years. Monica, she’s everything to me, nobody has ever affected me like her. We click, being with her, it’s as natural as breathing. Around her, I feel like the me in my head, I’ve never had to wear a mask to make her love me. She does love me, she loves me exactly as I am, all the shininess, and the dark darkness. I am genuinely happy when I’m with her, I feel peace. It’s just, our relationship hasn’t been a straight-line.

We’ve been in love for so long, best friends who so wanted more. Getting to more, it just didn’t seem like it would ever happen. We’d get SO CLOSE, then not. It almost didn’t happen, I honestly thought I’d lost her. That feeling was probably the worst pain I’ve ever felt. I wrote things like Christmas in a park, Telling a story, The world outside is burning… There were things she thought she couldn’t tell me, for months we barely talked, let alone fell asleep holding each other. The distance was bad, and I thought it permanent, but I had no idea why.

Jump ahead to where she tells me everything that kept us apart, jump to where she tells me she loves me, she doesn’t want to be without me any longer, she wants to be “us.” Jump back to where I’d started seeing someone else because being alone just hurt too much, jump to us being together for a month, jump to me leaving her and destroying her heart. I feel awful for hurting her. She said she loved me, and was nothing but good to me, but I couldn’t stay. I knew I belonged somewhere else, I couldn’t pretend otherwise anymore. I wanted to be good to her, to love her deeply, it just didn’t work. I think I was good to her, when I left I was just honest. Leaving wasn’t easy, I did have feelings for her, I told her so.

She didn’t take it so well, somewhere on tumblr there’s a blog partly dedicated to what a disgusting “womanizer” I am. Posts about how the stuff that comes out of the hole in my neck smells awful, how I suck because I’d never be able to open a car door for her, or cook dinner, or kiss her in certain places, then she gets really harsh. She basically put everything about me that scares me, everything I’m self-conscious about, into one nightmarish paragraph. She’s apologized and took a lot of it down. She said she wrote it specifically to hurt me because I hurt her, but she didn’t actually mean it. I understand that intellectually, and I still feel awful for hurting her the way I did, but what she wrote really fucked me up. I’ve been scared that when I kiss and touch, I’m a let-down, that a woman who’s with me is missing out on too much for me to be worth it. Monica says that just isn’t true, that she knows certain things with me are going to be different, but that’s okay, she loves me so much, but I’m scared anyway.

Jump ahead to right now. I know I’m in the right place, I’ve wanted to be here for so long.

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And… we’re back! Oh, and fuck you, 2010! And some talk about transparency…

July 07th, 2010 | Category: Life

So, I’m back from visiting the hospital for the last week. I picked up another sinus infection, that’s two in the last two decades, both in 2010. Go 2010, fuck yeah! 2010 has been a really fucked up year, but can I write about any of it, any part of it that Goddamn fuckin’ matters? No, of course not, not really. If I were really hardcore about transparency, really dedicated, I’d just write everything. I’d write it all and fuck the consequences. Write it all no matter what. Right? Or…

Is there a difference between “personal transparency” and something like… “interpersonal transparency?” I don’t have any problem writing about the thoughts in my head that pertain to me. That’s easy. No matter what happens, I have that covered. However, when it comes to writing about people in my life, those people and those relationships, and how they affect me, and how I affect them, and the way we’re all tied together, no. Apparently, I can’t.

The whole point of this blog is transparency. The fiction I write is okay and all, but I’m pretty sure that readers would much rather read posts full of bleeding edge, unflinching honesty about whatever’s in my head. When I was lonely and introspective, that was easy. As things are right now, certain people dominate my thoughts, these people and the ways we affect each other, and the ways we’re all strung together. That’s what is most important in my life, but I can’t write it. The writing wouldn’t just affect me, I’d be dragging the people I love and care about most into my crazy transparency experiment. That doesn’t feel right.

So, if I’m being selective about the ways in which I’m being transparent, am I not being true to why I started this blog? Is transparency an all or nothing kind of commitment? Who the fuck knows? I don’t know. I need to think about this awhile.

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