My Whole Expanse I Cannot See…

A Woman a Man Walked By is the result of a collaboration between PJ Harvey and John Perish, Black Hearted Love is one of my favorite songs on that album.

To me, the song is about a woman and her lover, and their intense connection to each other. My favorite line goes…

“When you call out my name in rapture, I volunteer my soul for murder. I wish this moment here forever…”

When you give yourself to someone, your skin against theirs, and you genuinely feel something deep for that person, that’s kind of the pact. You give your soul to that person, and they can do what they will with it, keep it or destroy it. This pact can go both ways, but not always, Still, the moment that pact is formed, it’s like magic, and you wish you could stay in that moment forever. At least, that’s what I take from the song.

I’ve never written about politics here before, but something’s really bothering me, there’s something going on in America that’s really upsetting me. That thing is, “The Obama Paradox,” I didn’t coin that term, I heard it on the Rachel Maddow Show. It’s a term that illustrates the fact that the reality of the Obama Administration doesn’t match public perception. His approval rating kind of sucks, people are unhappy with him. The perception is that President Obama isn’t really doing anything. He was supposed to do things, big important things, but apparently he isn’t, I guess. I guess Republicans and Democrats were supposed to come together in some orgy of cooperation, every American was supposed to ride to their kick-ass awesome new job on a unicorn, we were all supposed to be awash in a sea of bliss, but since those things haven’t exactly happened, President Obama, well, sucks. Unfortunately, people don’t seem to follow the facts.

The facts are these, President Obama took office in the middle of a disaster caused by eight years of BAD decisions by the previous administration. Our economy was on the brink of  collapse, on the brink of a second Great Depression. It’s been his job to dig us out of that mess, and in a really ugly political climate. Republicans do not like him, they’re not pleased that they lost the election. With all this against him, his administration has managed to pass record amounts of landmark legislation. The Obama Administration passed sweeping Wall Street reform, Student Loan reform, Health Care reform, a new Hate Crimes law (something that so many others have tried and failed), a very important Stimulus Package that’s actually working, that included the largest middle-class tax-cut in U.S. history, he’s done all these things and more in under half a term.

President Obama is doing things, really important historical things. If he has a fault, it’s that he’s too subtle about his accomplishments. He doesn’t have a giant PR machine touting his achievements. While the right-wing media slams him with lies, he quietly continues his work rather than get mixed up in some PR smack-down. So, give President Obama some credit, he’s definitely earned it.

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.

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.

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

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. لعب روليت حقيقي 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. لعبة روليت للايفون

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. العاب تربح اموال حقيقية 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.

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. ماكينات القمار 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. بلاك جاك كازينو 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? قواعد لعبة البوكر Is transparency an all or nothing kind of commitment? Who the fuck knows? I don’t know. I need to think about this awhile.

Oops...

So, I keep tweeting about Tattoo Crisis 2010, which in turn ends up on my Facebook page, and since I haven’t explained Tattoo Crisis 2010, a lot of people are confused.

Two Thursdays ago I decided I wanted my thirty-ninth tattoo. I have this list in my head of the tattoos I want, and I just knock them out whenever I feel like it. Things usually go absolutely fine, thirty-eight times everything went fine. This time, though, this time I did something astonishingly stupid. There’s this PJ Harvey song, The Devil, the last three lines of the song are beautiful, and I’ve wanted them as a tattoo for awhile. So, before I went out I listened to the song a bunch, and I looked up the lyrics at Metrolyrics.com, just to make sure I didn’t mis-hear anything. I always check, but this particular evening I only bothered to check the one site. I was all, “Yep, that looks the way I hear it, let’s go!” I didn’t check other sites, and in another BRILLIANT move I didn’t check PJ Harvey’s site, not until the next day anyway. Apparently, I fucked up a word, “finally” should read “formerly,” which is really more perfect than I thought. I was stupid, thoughtless, needlessly impulsive. This is hands down one of the dumbest things I’ve done in a very long time.

So, I can’t just leave it, I can’t have a typo on my chest for the rest of my life. I’m going to fix it, it’s not going to be the most elegant fix, but the mess of it will be a constant reminder to slow down sometimes, to think before I do. I’ll post again when things read as they should.

I know, I’m an idiot.

Tattoo by John, Las Vegas Tattoo, Ybor City

So, I’ve been admittedly kind of lost for awhile. Just look at my general lack of writing, I clearly don’t know what the fuck I’m doing much of the time. A year ago, the road felt so much clearer. I wanted this, and this, and this, and then I’d be happy. It’s difficult when you have this plan, this map of your life, and that plan doesn’t work, and that map catches fire, and you pour vodka on it trying to put out the blaze. You end up lost because you only had one answer to the question, “Well, what would make you happy?”

This all sort of hit me one day when my favorite Indigo Girls song, Closer to Fine, came up in my shuffle. Life doesn’t have just one answer for every question, and the sooner you figure that out, the sooner you open yourself up to everything if something else isn’t working, the closer you are to fine. Hence my thirty-eighth tattoo.

Tattoo by Fish, Las Vegas Tattoo, Ybor City

This, my thirty-seventh tattoo, is from one of my favorite Aimee Mann songs, Susan, which is from her album, Bachelor No. 2 (Or, The Last Remains of the Dodo).

Susan is a song about a relationship. This woman, she meets a fellow, and he makes her really happy, keeps the storm clouds away. Going in, she knows it’s not going to last, that she’ll be lonely again and he won’t be able to drag her out, but none of that matters. She goes anyway. Happiness “may be pure illusion, but it’s beautiful while it’s here…”

It’s a very melancholy, but often very true idea. It’s an idea that’s true of absolutely anything, any human experience. Nothing good in life is guaranteed to last until one drops dead. There’s always the risk of lost love, or rejection, or failure, or returning loneliness, or any bad thing imaginable, but the risks are worth taking. Everything good that we feel is potentially temporary, potentially an illusion, but that illusion can feel pretty fuckin’ awesome when you’re smack in the middle of it. Illusions always have the possibility of turning out to be real. Illusions and possibilities are reasons enough to keep breathing, reasons enough for me anyway.

Sometimes, I just think too far ahead, I think about endings more than the beauty of right now. I’m always trying to remember to enjoy the good things right in front of me. Tattoos are good reminders of things that shouldn’t be tossed away and forgotten, they’re reminders you carry wherever you go.