My Whole Expanse I Cannot See…

Author Catherynne M. Valente wrote an amazing post over at Ecstatic Days on how sci-fi has prepared her for the future…

I’m Aimee Mann’s Goddamn fucking moth. I’m fueled by need and anger desperation. I need the life I want. I’m angry it’s so difficult. I’m desperate not to fail. I’m sick as shit of people telling me what’s “best” for me. I’m sick as shit of people pretending to know what’s in my heart and in my head. My biggest fucking mistake is trying to please everybody while not pleasing myself. I’m done. I’m out. Fuck it. Fuck doing what I’m told. Fuck juggling everybody’s happiness. That doesn’t get me anywhere but miserable. Fuck wasting time. Barring something incredibly stupid, everybody I know is going to outlive me, so fuck not pleasing myself. Fuck feeling guilty about the things that I want. Fuck it all. I’m a good Goddamn person, flawed like anyone, but good. I’ve endured a whole Goddamn fucking lot in my 27 years and I have held up pretty fucking well. The same people who tell me what to do would have broken by now were they in my place. 

I stumble, but I don’t quit. I beat my wings till I burn them black, but I don’t give up.

The Curious Incident of the Dog in the Night-Time by Mark Haddon is one of the better little novels I’ve ever read. It tells the story of Christopher, a fifteen-year-old boy with Asperger’s Syndrome, an Autism Spectrum disorder. Christopher likes to walk his neighborhood late at night when the world is quiet and seems empty. He likes the solitude, it’s comforting. One evening he finds something quite disturbing, his neighbor’s dog, Wellington, stabbed to death with a garden-fork. His neighbor finds him holding poor Wellington, so of course, she calls the police. Christopher cannot tell lies, Asperger’s doesn’t allow it, he gets to go home with a stern warning to stay out of trouble. Christopher likes dogs, and murder mysteries, he’s a genius with puzzles, so he decides to investigate Wellington’s murder and write his investigation as a novel for a school project. 

Honestly, I didn’t know what to expect from this book, but I couldn’t put it down. Haddon masterfully captures the behaviors of a person with Asperger’s. Christopher thrives on logic and order, he’s brilliant with math and solving puzzles. He’s emotionally detached from people, he doesn’t understand the subtleties of emotions and body language. He doesn’t like talking to most people because they do and say things that he genuinely doesn’t understand, which is frightening to him. He loves the idea of being an astronaut living alone in outer-space, he finds absolute safety in solitude. We learn all of this as Christopher narrates the story of his detective work. It’s fantastic how quickly Haddan inspires empathy for Christopher. Behaviors exhibited by people with an Autism Spectrum disorder are often seen by people as extremely odd or even disruptive. They can’t look you in the eye, they cover their ears and rock back and forward. They scream in public for no apparent reason. Through Christopher we better understand the whys of his behaviors, he’s living in a world in which he simply doesn’t always fit. 

The Curious Incident of the Dog in the Night-Time isn’t just about a murdered dog, it’s really so much bigger. The story is so compelling because Christopher pushes himself so far out of his comfort-zone, he does things that terrify him. Ultimately, he discovers far more than who murdered Wellington.

So, yesterday I tried the Passy-Muir Valve. I lasted 35 minutes and everybody was quite pleased with how I did, but I’ll be honest, I won’t try to spin things, it was really very difficult. I could only actually say a few words and they didn’t come easily. It’s disturbing not being able to do something that I used to do without thinking. I’m told that I just need practice, rehab, but I don’t know. I want to be hopeful, but I find it difficult.

The Passy-Muir people were definitely spectacular, I couldn’t have been in better hands.

So, last month I was contacted by the President of Passy-Muir, Inc, makers of the Passy-Muir Valve. It’s a plastic valve that attaches to traches, hopefully allowing users to talk. Experts from the company are flying in tomorrow morning, people who worked with Christopher Reeve and Pope John Paul II, 45 members of the hospital are coming to watch, I couldn’t be in more skilled hands. Will it work for me? I have no fucking idea. I want it to work, but I’m afraid to want it too much. I’m going in with low expectations, it’s all I can do right now. At least it’ll be over one way or another.

Here’s a better view my poppy tattoo…

Yesterday I got my ninth and most ambitious tattoo. It’s the most ambitious because unlike the other eight, I cannot really hide it. The others are on my arms and legs, two on my torso, all easily hidden by clothes. This new one, this one I cannot easily hide. It’s on the top of my right hand, a big red poppy.

I got it for a few reasons, I’ve definitely wanted it for awhile. The main idea being, I really like opiates, I used to like them far too much. I completely understand why people pick them up and never put them down. In many ways they’re beautiful, they help you feel absolutely fucking perfect no matter how astonishingly bad reality gets. I don’t care what anybody says, sometimes you need that feeling of safety, that peace. When the entire world goes dark, a little light helps. Back when I was really sick and really terrified, really alone, when everything I ever feared happened all at once, opiates were like a nice warm blanket, a kiss from Sara, a hug from God. I don’t at all regret or apologize for taking that comfort. Try living that nightmare and tell me I did the wrong thing. However, after some time, you have to stop hiding and face the darkness. Eventually, that thing that is so beautiful will hurt you.

This tattoo, a tattoo I cannot easily hide, is beautiful, but after not too long it definitely hurt me.

Sara’s second article is in the Boston Globe, but this time… it’s on the front page! She’s so ridiculously badassed… شرح البوكر

http://digg.com/tools/diggthis.js

So, under stress, I tend to make really stupid mistakes, mind blowingly stupid. Over the past few months, on several occasions, that mistake has been drinking way too much and lying about it. It’s such a stupid thing to do, but I kept doing it. Unfortunately, I did it again Friday night. I promised, I swore that I wouldn’t do that again, but I totally got smashed. I broke my promise again, I hurt someone I love more than my Goddamn fucking BiPap. I really hate that there’s something in me that could do something so awful. I keep thinking about the whys…

I’m nervous and uneasy just about all the time lately, it just doesn’t stop, it’s almost always something. When you find something to make that feeling go away, you really like it. Anything for some peace…

Alcohol has certain sensual qualities. It puts a nice warm feeling in my chest, it puts an amazing taste in my mouth. I really do love my peg tube, but sometimes I really do miss strong tastes while eating. I get certain flavors in my mouth with the peg tube, garlic, various spices, mint, but alcohol is by far the most noticeable…

Okay, this reason seems pretty stupid, but I saw drinking as a way to exert personal independence. Everybody kept telling me that I couldn’t do it, which, stupidly, only made me want to do it more. I wanted that choice. I wanted to prove that I could handle it. However, I definitely can’t seem to handle it, so it’s time to close the bar and call it a day…

So, I made mistakes that I can’t go back and undo. I can only go forward and not make those mistakes again. I’m going to see a doctor about some anti-anxiety meds, I’m going work on things that bother me, but I’m definitely through with the drinking. I wish I’d been smart enough to figure this out sooner, before I lost anything important.

This week I had an idea. I decided to hit Starbucks with Sarah, my assistant. The idea was to let her use my travel computer to tag the sixty some blog posts I neglected to tag while I sat with only a cup of tea and my iPod, and my thoughts. I figured with an assistant there to check in on me, I’d be able to just sit and think without having to worry about not having my switch. If I have my switch, I’m not exactly “relaxing,” I’m always doing something, reading, playing a game, writing, something. Also, I feel like I should be able to just sit and kind of meditate awhile. Driving’s another place where I attempt quiet contemplation, but trips are usually short and during longer trips I tend to simply nod off. So, Starbucks, one hour, the iPod and my thoughts. Stupid. Idea.

Quiet time is just time for uninterrupted fretting. I’m not good at just turning off the zillion thoughts in my head. Still, I feel like I should be able to do so…