My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

Archive for December, 2012

2012: Almost over

December 30th, 2012 | Category: Life

So, I turn thirty-two tomorrow, and 2012 ends tomorrow.

I can’t say I’m going to miss 2012, it was kind of shitty. Still, I’m with someone I really love, who loves me, and I had to go through the Suckfest of 2012 to be here right now, happy, with her, so I’m not complaining. I just want to stay with her, and have crazy adventures, and write well, that’s all I’m asking of 2013.

The folks at WordPress sent me a report of how the blog held up over the last year, it was not glowing. It really showed me that I need to wake up and be better. People quit reading, but people have stuck around too, I definitely want to thank those in the latter category. Thank you for not giving up on the hope that my writing will get less awful! Seriously, thank you for sticking around. I promise, this place will be compelling again. If you left, you’re obviously not reading this, but still, I’m going to make this place worth coming back to, a promise I’m making into the void.

I don’t want to disappear.


And for the Flickr folks…

December 23rd, 2012 | Category: Life,Tattoos

For the Facebook sort

December 23rd, 2012 | Category: Life,Tattoos

For those of you inclined toward Facebook, I’ve finally posted my current sixty-seven tattoos…

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December 22nd, 2012 | Category: Life

Today, very little happened. I woke up, that was the most interesting part of today.

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A favorite thing

December 21st, 2012 | Category: Life

The Beatles’ Rooftop Show

The above is one of my new favorite things.

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Tattoo #67

December 20th, 2012 | Category: Life,Tattoos
Tattoo by Fish, Doc Dog's Las Vegas Tattoo, Ybor City

Tattoo by Fish, Doc Dog’s Las Vegas Tattoo, Ybor City

So, here we are, tattoo sixty-seven, I currently have no more after this one. Don’t worry, sixty-eight is totally coming in the next few days. Still, right now, sixty-seven is the newest.

It’s a bee! Why a bee? Why NOT a bee…?

There’s one just like it floating around somewhere else.

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Tattoo #66

December 20th, 2012 | Category: Life,Opinions,Tattoos,Thoughts on Music
Tattoo by Colt, Doc Dog's Las Vegas Tattoo, Ybor City

Tattoo by Colt, Doc Dog’s Las Vegas Tattoo, Ybor City

So, this is another Aimee Mann tattoo, lyrics from her song, Long Shot, which is off of one of her earlier records, I’m With Stupid.

To me, the song’s about this relationship that just goes bad over and over and over again. The one person keeps trying to end it for lots of reasons, solid reasons. Right? Yes, sure. Not really, though. All those reasons that seemed so solid just end up being, “please love me more.” Love isn’t rational, it’s just something you feel, and want, no matter the reasons for or against it.

Anyway, the tattoo felt appropriate.

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Tattoo #65

December 20th, 2012 | Category: Life,Opinions,Tattoos,Thoughts on Music,Thoughts on Writing
Tattoo by Colt, Doc Dog's Las Vegas Tattoo, Ybor City

Tattoo by Colt, Doc Dog’s Las Vegas Tattoo, Ybor City

So, this tattoo is from a PJ Harvey song, The Soldier, off of a record she created with John Parish, A Man a Woman Walked By.

I really like The Soldier because she takes the incoherent, yet vivid nature of a nightmare, and makes it coherent. Few writers can do this well, I’m talking song writers, fiction writers, any sort of writer. Dreams, and especially nightmares, are just not easy to put to words. You want to keep it wispy, surreal, vivid, yet something readable and compelling.

The song is about a soldier who has seen horrible things, done horrible things, is damaged, completely fucked up by these experiences, and at the end of everything just wants to go home. That’s how the last year felt, the last few years felt, leading up to this tattoo. I just want to take all my damage, everything I’ve made so external, I want to take it all and go home,

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Changing tropes

December 20th, 2012 | Category: Life,Opinions

Here’s my problem with the “Technology Made Me a Real Boy!” trope.

Society pretty much sees us as lamps, expectations for the disabled are REALLY low. We’re not automatically expected to go off to school, get straight A’s, fall in love, get married, everything that was totally automatically expected of my brother. I was never told I COULDN’T do these things, but I was never pushed toward them, plans were never made, nothing was expected.. The first time I told my mom, “I met this girl online, I have a date tonight,” she had no NO IDEA what to say, or do, or even think. I just went and she didn’t try to stop me. The lack of expectation never bothered me, it actually pushed me, but it definitely bothers many.

I had this one disabled friend, Stuart, his family sheltered and coddled him, told him he could do ANYTHING, just like anyone else. He had a closet full of tennis shoes, just so he could look “normal.” The problem was, he was so sheltered, and protected, and told “YOU CAN DO ANYTHING, YOU’RE NORMAL!” that when he ran into a normal road-block, when he couldn’t ride the rides on a field-trip to Busch Gardens, or when it finally got too hard to hold a pencil, he’d lose it. He felt how not normal he was perceived by society. It wasn’t, “Maybe a few of these rides should be accessible” or “Maybe technology could just replace my pencil,” it was, “Oh God, I am so not normal!” In general, to his middle-school teachers and peers, he was just the “disabled kid,” and in turn, that’s all he was to himself until he got the flu that killed him.

So, we have two problems. Society expects nothing from the disabled, and the disabled feel inherently less than, and when parents over-compensate, that feeling of being less than only comes on harder, because after all, nobody with SMA will ever drive a car.

I don’t like the low expectations, on both levels.

I want to see society shift toward, “Sure, you’re different, but that only means you’ll need technology, you’ll need personal assistants to have the same experiences as anybody else. You’ll have the experiences, you’ll just get there differently. You’re not a lamp.”

I don’t want to see disabled people saying, “I felt like a lamp, I was absolutely nothing until I got X device. Thank you! Thank you for making me a real person.”

The trope should be, “People often treated me like a lamp, people who never took the time to try to communicate with me. I was seen as furniture, but I’m not, I just had all these thoughts, feelings, that had no easy way out of my head. Now that I have X device, people can see the me in my head, who I really am. Thank you for giving me a better way to communicate, a way to show what’s always been behind my eyes.”

Do you see the difference? “Technology empowered me,” rather than, “I was broken until technology fixed me.” People with disabilities should NEVER FEEL less than, we should insist on having the tools we need to show the world who we really are, human beings, not lamps, or broken dolls.

To answer a reader

December 17th, 2012 | Category: Life,Opinions

So, a reader recently wanted to know…

By the way, why do you have those things on your head? are you alright???

Yes, they really used three question marks. Well, given the urgency of the question, and since I figure other people have the same question, I’m going to answer here.

No, I’m not dying. Those “things” on my head are sensors that are attached to my NeuroSwitch. The NeuroSwitch gives access to SwitchXS, the software that gives access to Mac OS X and everything else. Basically, the sensors on my forehead read the electrical impulses caused by wiggling my eyebrows, passing the signal on to the NeuroSwitch. The NeuroSwitch wirelessly talks to my computer, which talks to SwitchXS. So, I wiggle my eyebrows, a little on-screen keyboard (SwitchXS) pops up on my computer, and from that keyboard I type, move the mouse, launch apps, play World of Warcraft, drive robots, whatever.

NeuroSwitch is by far the most advanced switch around, it helps where every other switch fails. SwitchXS is the most advanced switch access software around, it allows access to the world’s most advanced operating system, Mac OS X. Together, they really do help make disability a non-issue.

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