My Whole Expanse I Cannot See…

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 corners to anyone who would listen if nobody would pay her to 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.

Until the Kindle for Mac app was released, I’d never actually read Fight Club, but I’d always just figured it was amazing. I mean, the film version sounds like Chuck Palahniuk at his best. It sounds like Survivor, and Invisible Monsters, and Choke. Fight Club is one of the movies I turn on just to listen to the writing, it’s practically an audio book. The film version of Fight Club is edgy, and smart, and entirely plausible in a violently surreal way. Brad Pitt’s Tyler Durden is fucking brilliant, and totally fuckin’ cool. You want to be him, or at least hang out with him. It’s obvious why Edward Norton’s Narrator created him for an alter-ego. The film’s ending, all those corporate offices crashing down, Norton’s Narrator and Helena Bonham Carter’s Marla Singer holding hands while everything burns, it’s beautiful and perfect. They’re two fucked up people, but they found each other and in that moment, they’re happy.

If I had to pick a single word to describe Fight Club as a novel, that word would be “juvenile.” If I had to pick a second word, it’d be “tedious.” I found reading it to be painful. Palahniuk is so over-the-top, so obviously trying to shock people, that the novel reads like a ridiculous farce. The Narrator isn’t likable, he reads like a bitter seventeen year-old walking around in a thirty year-old body. We get more of his back-story, but his story isn’t endearing. Throughout the novel, one doesn’t get the sense that he’s evolving, growing up, learning anything from his experiences. He isn’t learning anything from Tyler because Tyler isn’t teaching anything genuinely valuable, he’s just an angry kid throwing a violent tantrum at the world. The Narrator and Tyler are just different degrees of bitter teenager, Tyler being more prone toward violence. Pitt’s Tyler is definitely irreverent, absolutely an Anarchist, but when he speaks it’s intelligent. He makes sense, in a dark sort of way. The same can’t be said of Tyler’s book-bound counterpart.

The novel contains various themes; losing everything makes one free to do anything, material possessions are an empty measure of one’s worth, paternal abandonment, destruction as a form of creation, all interesting for one to consider.  Unfortunately for the novel, these ideas are buried under a ridiculous story in which Tyler is making soap from stolen lard liposuctioned from Marla’s mom’s ass, lard Marla was saving to use for her own future lip and ass enlargement injections. A story in which Tyler and Marla constantly refer to each other as “buttwipe.” A story in which Marla and a bunch of cancer patients, some in wheelchairs, race to the top of a building to stop Tyler from killing himself. Fight Club as a novel smacks of immaturity and blatant attempts to shock readers with useless, crude dialogue. I’m sure at seventeen, Fight Club would have been taboo and amazing, but I’m not seventeen, and I’ve experienced too much to be able to relate to so much fluff.

The film version of Fight Club manages to distill the best elements of its source-material into a thought-provoking, intelligent story that’s ultimately beautiful in all its darkness. Maybe I’d feel differently if I’d read the novel first, but I doubt it.

I’ll be honest, I’ve never read any genuinely great zombie fiction. There are plenty of fun zombie movies, but books about zombies, they’re not particularly compelling. I’ve never picked up a “zombie page turner,” that is, until I picked up Boneshaker by Cherie Priest.

Boneshaker takes place in an alt-history Seattle during the 1870s gold rush. Russia puts out a call for inventors, they’re looking for a drill capable of breaking through the deepest layers of Alaskan ice in search of gold. Enter Leviticus Blue and his Boneshaker, the most powerful drill ever created, and soon enough, the most infamous drill ever created. During the Boneshaker’s first test run, something goes horribly wrong, the drill takes off, supposedly a malfunction, buildings collapse in its wake. The Boneshaker also just so happens to cruise by the Financial District, emptying every bank vault in Seattle. Blue turns up missing, possibly a thief, possibly killed by his own greed. Before an investigation can be mounted, a strange yellowish fog begins to seep from the city’s gashes. This fog is lethal upon inhalation, but after death the victim awakens, mindless, violent, and hungry for the taste of human flesh. These walking dead are dubbed, “Rotters,” and they quickly decimate the city. A massive wall is constructed around Seattle, but with the rest of America embroiled in civil-war, this raveged city is left to the Rotters trapped within.

Sixteen years later, Briar Wilkes, Blue’s widow, struggles to raise their teenage son in the world outside the wall. Briar doesn’t dare go by her married name, it isn’t particularly popular, given the wall, and the Rotters, and the death. Briar would just as soon let the past go, but her son, well, he can’t. Zeke wants to clear the family name. His mother’s silence of the past drives Zeke toward something drastic, a crazy journey under the wall in search of proof that the fall of Seattle was just an unfortunate accident. Realizing her son’s misguided plan, Briar does what any loving mother would do, she aims to find her son and bring him home.

Boneshaker falls under the genre of Steampunk, with a zombie twist. There are flying-machines, massive air filtration systems, deadly weapons, all powered by steam. None of the technology should exist, yet it’s entirely believable. The novel is truly a page turner, I absolutely couldn’t put it down. Priest’s pacing is pitch-perfect, switching perspectives between Briar and Zeke. Boneshaker often reminded me of Cormac McCarthy’s The Road. Inside the Seattle wall, death is always a palpable possibility. Clean air, water, food, ammunition, they’re all vital, and they’re all astonishingly scarce. I was constantly worried for Briar and Zeke, always hoping that their gas mask filters wouldn’t clog before safety could be found, always scared Briar might not have enough bullets to match with the Rotters. I just wanted to get to the next page to make sure everyone was okay. Boneshaker is fraught with a very satisfying sensation of tension and release. The tension exists not just from violence and zombies, but from the fact that Priest manages to create characters that are very real and relatable. We care about Briar and Zeke because they’re just a normal family trapped in an absolutely bizarre and dangerous situation. The book is compelling because it’s ultimately about the push and pull relationships between parent and child, mother and son. It’s about parental protection versus a child’s desire for independence, and finding balance between the two. We all can relate to that on some level.

Boneshaker is definitely a must for any Steampunk fan, but Priest’s spectacular use of story-telling and wonderful prose makes it worthwhile for a wide range of fiction readers.

So, I recently read The 12 Burning Wheels, a collection of twelve “micro stories” by Cesar Torres. 12 Burning Wheels is sort of a concept book, not a typical collection of short stories. It’s a book that started as a not-so-simple simple challenge. Torres challenged himself to write twelve stories, stories around a thousand words each, in twelve days. The result of this personal challenge ended up being a rather solid collection of micro fiction.

The 12 Burning Wheels equates to eighty-two pages of engaging fiction. I consider it a collection of magic realism, stories in which people drive cars, slurp Big Gulps, ride L trains, then pop into local pawn shops to pick up magical scrying devices. Stories in which magicians are dubbed “aura technologists” and featured in People Magazine. Stories in which an iPhone app can interpret dreams and foretell one’s future. Magic is a part of every-day life in these stories, it’s just a fact. I always love fiction in which typical human experience is infused with magic, where working love potions can be purchased alongside Mountain Dew. The 12 Burning Wheels tells these sorts of stories.

A few of the tales in The 12 Burning Wheels don’t feel like standalone pieces of micro fiction, they’re more like reading excerpts from much larger pieces of work. I found their abrupt endings to be a little jarring. I’m of the thought that micro fiction or flash fiction, no matter how short, should still tell a complete story. I felt this in only three of Torres’ twelve stories, and even so, I enjoyed the three stories quite a lot. Tores’ prose are lush and delightful to read, 12 Burning Wheels is a collection I definitely recommend.

So, last month Amazon released their test version of Kindle for Mac, allowing Kindle eBooks to be read on Mac desktops and laptops. I’ve been reading eBooks since the beginning, and Kindle for Mac is definitely the nicest eBook software I’ve ever used. It’s not even feature-complete, yet the current feature-set is totally enough to crush other eBook formats. For example, the Kindle app is tied to a user’s Amazon account. If one purchases a book on say, Kindle for iPad, that book gets synced to Kindle for Mac. So, one can have their entire eBook library on-hand on any device running Kindle software. I have multiple Macs, so it’s really nice being able to have my library whether I’m on my home Mac or my travel Mac. The Kindle apps also have a feature called, WhisperSync, which allows one to start reading a book on one device, then pick up exactly where they left off on another. I love being able to read a book out on the town, then pick it up on my home Mac without losing my place.

The biggest attraction to Kindle, however, is the book selection. I’ve been able to find just about every book I ever wanted. Just about… Michael Cisco isn’t published in Kindle-form, which was quite a let-down, but he’s the only author I haven’t been able to find. Maybe one day, I hope.

At any rate, until Apple releases an iBooks app for Mac OS X, I’m all about Kindle for Mac.