My Whole Expanse I Cannot See…

Tattoo by Colt, Las Vegas Tattoo, Ybor City

So, this tattoo… The lyrics are from an Aimee Mann song, King of the Jailhouse, which is off her record, my second favorite, The Forgotten Arm. If you listen to the record in order, the songs tell a story about this alcoholic, washed up former boxer, and his girlfriend, and the arc of their relationship from beginning to end. Few albums are perfect, there are always a few songs that are just “meh,” but I think The Forgotten Arm is as close to perfect as an album gets.

As for the tattoo, well, I’ll just say that if I’m stressed enough, and lonely enough, I’m guaranteed to do something stupid. I’ll do the worst, dumbest thing possible, and I don’t know how to fix that about myself.

The Habitation of the Blessed: A Dirge for Prester John, Volume One by Catherynne M. Valente is her latest work and her addition to the legend of Prester John. Tales of Prester John aren’t new, they began in 12th century Europe, but Valente’s take on him is definitely unique. The basic story, told for centuries, is that John was a Christian fellow who went East to convert millions and become ruler over vast and beautiful, and even magical lands. Within his kingdom one could find the Fountain of Youth, and countless wonders. Valente takes the basic framework of the Prester John legend and makes it her own.

When I picked up Habitation, I really had no idea what I was getting into. I just saw that Catherynne M. Valente published something new and I slammed my money down. Her books have never left me disappointed, and her latest is really no exception. I don’t want to give too much about the story, I don’t want to rob anyone of that sense of discovery that I experienced. The book is really home to four stories told by four characters, these stories brilliantly intersect and ultimately tie together to create a lush and fully-realized world. As always, Valente’s use of language is gorgeous, she arranges words into sentences, into paragraphs that create life. Early on, the reader knows that the world they’re immersed in is tumbling toward something bad, the “what” isn’t clear, but it’s clearly coming. This sets a sense of foreboding, it causes one to want to turn the page, and turn the page, and turn the page until the last page, the last revelation. There’s this shadow over everything, beautiful scenes take on an ominous feeling, because that fall is coming, it’s so right there. This book is haunting, I still think about the end, it tells a story that stays. Let it visit and stay with you.

I’ve been reading this book by Catherynne M. Valente, The Habitation of the Blessed: A Dirge for Prester John, Volume One. It’s good, and I’ll write a review after I finish, but one quote caught my attention…

“Distraction is the enemy of perfection.”

I will never be remotely close to perfection, it seems. I’m drowning in distraction, and melancholy, and…

This is Tea Party darling, Congress-woman, Michelle Bachmann, and a classic example of Tea Party interview strategy. If you get cornered by a real journalist, someone outside FOX News, stick to one across the board answer to every single question. Give absolutely no real answers.

So, the Republicans won big enough, they took the House, a bunch of Tea Party nuts won. Rand “The Civil Rights Act Was a Bad Idea” Paul won. I don’t understand how people could think this road is better, giving power back to the people who spent eight years digging the hole that has everyone so angry.

How could President Obama and the Democrats turn that disaster around in two years, especially with Republicans rubber-stamping everything with a giant “NO?” They slowed our progress, on purpose, in order to say, “See, the Democrats aren’t helping you.” They sold America out to gain enough political capital to win the mid-terms. They prayed to their gay-hating God that people wouldn’t notice their ploy, and people didn’t notice. They keep talking about debt, the American people spoke out about debt. Who gave us that debt? Who got us into two wars? Who gave the richest Americans massive tax-cuts, while letting everyone else suffer? Who de-regulated Wall-Street to a degree that nearly killed our economy? The Republicans did those things. It’s disgusting, I’m disgusted.

I never really cared about politics. Politics was just something that happened, I didn’t see it as anything tangible. I mean, my life didn’t seem any different depending on who got elected to what, and where. The thing is, I just wasn’t paying attention, thirty years of elections and those people elected, steering legislation, it has all affected my life. Because of lots of legislators, President Clinton, even Governor Jeb Bush, especially Jeb Bush, being disabled doesn’t mean I have to be stuck in some institution, or dead. Because of legislation I have access to healthcare, and assistants, and technology. I can go on dates, and to movies, and whatever else I love doing, all because my place in society is legislated, and because I’m a part of society, I can give back. I never really considered any of this until Curling and the 2010 Winter Olympics. See, Curling was on MSNBC, like, at any given hour, and at some point during my Curlingasm I stumbled onto The Rachel Maddow Show. I always like someone who’s passionate about what they do, Rachel is totally passionate. I was mesmerized. She LOVES politics, she’d talk about it on street cornerers to anyone who would listen if nobody would pay her to they do so. If it ever comes to that, if Rachel Maddow ends up talking politics in Times Square, I’ll totally camp out with her. She’s brilliant, she knows her stuff, and that’s why I kept watching. Then I started watching Countdown with Keith Olbermann, and, well, I feel like I’ve stepped through the Looking-Glass and there’s no going back. Politics is tangible, there are consequences to who gets elected to what, and where. Today’s mid-term elections are serious, and important. Frankly, I’m worried about what could happen to people with disabilities if too many Republicans win today, I’m worried about the entire country.

Today’s Republican Party is scary, they’re extremists who will take us backward. The Tea Party is a group of uneducated nut-jobs with winning ideas like, the repeal of healthcare reform, the abolishment of the Department of Education, the privatization of Social Security and Medicare (ie, if the private sector crashes again, those programs are fucked), the criminalization of abortion, no Civil-Rights for gays, I could go on and on. These are their goals. As a whole, the Republicans are big on investigating President Obama. You know, proving he’s a Kenyan Socialist secret Muslim terrorist and tossing him out of office. Forget the economy, public education, clean energy, the Republicans have other more pressing matters at hand. This sounds crazy, I wish it was fiction, but it isn’t. It so isn’t.

People are frustrated with President Obama, and in-turn the Democrats, President Obama was supposed to unite the parties and give every American a job, and a unicorn, but things haven’t quite worked out that way. President Obama took office and inherited a disaster, an economy on the brink of The Great Depression II: Depression Strikes Back, two wars, massive debt caused by those two wars, he walked into a nightmare. I’ve always said that the Obama administration sucks at PR, at touting accomplishments. People don’t realize the good he has done in under two years. The deficit is down under President Obama. The evil Stimulus Package, it worked. It saved our economy from collapse, saved millions of jobs, and included tax cuts for every American. It didn’t create jobs like people hoped, but this is a work in progress. The evil bailouts of the auto and banking industries, they worked, the loans are being paid back. Imagine all the lost jobs if the U.S. car companies had folded. President Obama did all these things against fierce opposition from the Republicans. The Republicans simply do not like him, they fight every single bill the Democrats bring forward, even things they usually agree on, like infrastructure spending. Their goal is to make President Obama a single-term President, damn progress.

So, if you haven’t voted yet, do, and think about these things before you cast your ballot.

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.

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.

I’ve never had this much trouble writing, at least, not since I started writing this blog. It’s a bad feeling, not being able to create, it’s frustrating. I know I can fix it, I know I can dig my way out if I try hard enough. I mean, ultimately, writing is the only thing I have that’s truly mine, I can’t quit. Whatever I write is what will be around when I go wherever I go after I quit breathing, it’ll be all that’s left. I want something left. So, this not being able to write nonsense has to stop.

I need to pull myself together. I need to write with complete abandon. My writing is about absolute honesty, I need to get back to that place. I need to write like Kurt, and Elliott, and Alanis, writing without safety nets. Otherwise, the writing is empty and meaningless.