My Whole Expanse I Cannot See…

Okay, so, I enjoy guns, guns as thing. I like the sound a rifle makes when it’s cocked, I like the sound a revolver makes when one pulls the hammer back, I like muzzle-flash, I love the cracking sound machine-guns make… Aesthetically, I love everything about guns. I don’t like how guns are a thing people use to end other people’s lives, in a perfect world we’d only use guns to put down zombies.

Anyway, I have this Things to Do list that really isn’t getting done. I’m thirty, I’m old, the list needs to get moving again. To that end, one of my things is to fire a gun with an assistive technology switch. I have no idea how this would work. Would the switch connect directly to the gun? Would the gun be fired by way of software running on my MacBook Air that I’d access by way of my NeuroSwitch? I don’t know.

Do any of you know how I might fire a gun with a switch? I really don’t care what kind of gun I’m firing, I just want to fire at some target until said gun is empty. Can anybody help? I live in Tampa, I especially totally welcome local help.

I’m still pretty scattered, but I really am trying to post every-day and if I keep doing that, at some point, I’ll write something pretty. So, that’s the plan.

Yesterday, I started a big project, well, I made Lauren, my assistant, start it. A few years ago I got lazy and quit tagging my blog posts, really, my assistant, Sarah, used to tag them and when she retired, I didn’t keep it up. Part of it was, I just missed her, and doing the tags or making someone else do them, that just made me miss her more. So, the tagging stopped. Yes, an assistant’s just an employee, but the good ones, they do get really important. I miss them when they go, there’s a real sense of loss, another person who goes. Sarah was around when my thumb quit working and I could hardly type, hardly talk to anyone, before the NeuroSwitch. People weren’t really around anyway. Sarah was around though, so we’d go to lunch, at night we’d go to the bar, we’d alphabet conversations. She was good with the alphabet and smart to talk with, so she kept me sane when I really needed it. Sometimes, sitting at the bar, with a vodka tonic and ten dollars worth of Elliott Smith in the jukebox, I’d alphabet flash stories that she’d type up after. She was around for twenty-ish tattoos. She stopped me from dying once. She was around when I really needed someone to be around. A fix for a fix, but we were close and had fun. So, yeah, when she left, the tagging stopped.

Anyway, we’re tagging again, Lauren’s off to a spectacular start. Tonight, I go for another tattoo, and then and then and then…

People keep telling me, especially during and since yesterday, how amazing I am, that I’m so smart, I push assistive technology forward. I hear about all the good I do, the people I have helped and will help, with the way I show technology, with my writing. I’m told I should be proud of myself.

Helping people is great, and I seem to be born into it. I have the intellect and I’m ridiculously blessed with access to technology. I have always managed to have the best gear. NeuroSwitch, this software, SwitchXS, their developers pretty much designed both solutions for my specific desires, to my specifications. The thought being, design for the high-end and you help everyone, novice to advanced.  I take the technology and show vast possibilities, people get inspired. I want to help people, I’m glad to do it. I can’t imagine not helping as long as I’m in a position to do it. I just don’t see why I should be proud of myself for doing something that’s simply right. You help people who need it, especially if you’re suited to do so, period. That’s what community is all about. I need plenty of help, so it’s just right to give back. I remember not having technology, nobody should feel trapped. When someone’s alone in the dark, all I want is to pull them out and make them feel safe, because I know alone, and I know dark. Helping people isn’t anything to praise oneself over.

Also, and this is just me… When I can’t sleep at 4 AM, knowing that I help people, it doesn’t make me any less lonely or any less scared. When I’m really down, I get a lot of “You should be happy that you help people, you should embrace that, you should let that fill you up. Happiness comes from within. Stay busy, work to help others.” I do help people, even when I myself feel dead inside. I can’t just quit, and I really don’t. The thing is though, I’m not Jesus, I’m just a fellow with a few hopes, a few dreams, certain things I want so very badly before I’m gone, and while I honestly desire to help people, and do so willingly, a life of service can’t be “it” for me. I’m supposed to be filled with this… peace, but I’m not. Really, almost nothing I do makes me feel pride or genuine contentment or genuine happiness. It’s all temporary, at best. I have my own, deep-rooted wants that go beyond service and being glad to simply exist.

There’s this scene in Cool Hand Luke, my favorite Paul Newman movie, where Luke (who has really done nothing remotely worth death, his original two year prison sentence for getting drunk and destroying parking meters), after escaping prison, is in a church surrounded by cops who want him dead. He starts talking to God, calls Him “Old-timer.” He basically says, Well, Old-timer, you made me this way (headstrong, smart, kind, rough, willful, at odds with everything), then you stacked the deck against me (put him in a position of service, obedience, a mundane “do as you’re told, don’t want for anything” life). So, what am I supposed to do? I know I’m a screw up, I make plenty of mistakes, but help me… Luke just feels stuck, and lost, and wanting. In prison, before his chat with God, the inmates looked up to him. All Luke’s courage, defiance against the system, all the times he got beat down (literally) only to get right back up again, it fed everyone else’s hope and strength. This role is basically fine for Luke, he wants to help, cares about others, but after getting the shit beat out of him in a particularly brutal way, with everyone looking to him to make them feel better about the situation, Luke finally breaks down and screams, “Stop feeding off of me!” They see Luke as this larger than life, break the rods of our taskmasters, Christ-like figure, but he’s not. He’s just a man, a basically good man who wants to do right, but who has flaws, who makes mistakes, who gets tired, who needs help himself sometimes. I know how he felt.

I mean, I’m completely grateful for all the spectacular, unique things I’ve gotten to experience, for all my “stuff.” I’m blessed, I know I’m blessed. I’m thankful for all of it. It’s just, no matter how many famous people I meet, or places I go, or people I help, or compliments I hear, or how well I write, none of it fixes the cracks that hurt at 4 AM. I’m missing something, I’m missing the one thing I’d trade everything else to have. It’s really nothing shocking, it’s not even unique within the human condition, it’s practically boring, yet to me it’s completely everything. No, I don’t want to be able to walk, or breathe and talk without machines, it’s nothing silly and pointless like that. I just want to go home, what feels like home to me, at least. It seems that the harder I try to have the only thing that’s truly important to me, the further away it gets. I’m so tired and uneasy. Being tired and uneasy makes me screw up, it’s this sickening infinite loop. I’ve screwed up so much. People tell me I’m amazing, all I see is failure, and time flying by.

So, I met with the Vice President yesterday. He was in town doing a fundraiser for Senator Bill Nelson, who I also met, along with his lovely wife, Grace. After Vice President Biden gave his talk on how backward the Republicans are, the Secret Service led us to a private room, skipping the always tedious receiving-line. The room didn’t have a table, so this fellow from the Secret Service had to hold my MacBook Pro so I could see it, which he did, minus the part about me being able to see the computer. He stands what seems like sixty feet away, at an angle to where I’m looking at my screen from under my glasses. My screen is a big, glowing blur. My mom’s talking about the importance of technology, whilst I can’t see said technology. Fortunately, I’m a spectacular blind typer. I have my keyboard memorized, I have a sense of how to time the locations of my letters and what-not. I made NeuroSwitch look as stylish as it should, while not demonstrating that I’m blind as a ninety year-old man.

I wrote this note to the Vice President…

I have used assistive technology for communication most of my life. After losing my ability to speak four years ago, assistive technology became especially vital. If I can’t type, I can’t talk. If I can’t talk, I may as well not exist. If I can’t talk, I’m furniture, I’m nothing.

For over fifteen years, I tapped a little switch with my thumb to access my computer. This was fine until a routine blood-draw injured my hand, and my thumb. Communication became harder and harder as my muscles got weaker and weaker. I felt trapped, terrified. Then I found NeuroSwitch, the best computer access solution I’ve ever used. NeuroSwitch allows me to access my computer with any muscle in my body via completely portable wireless hardware. With NeuroSwitch, I can communicate any time, any place.

Technology is everything to me, it’s how I live as a productive American citizen, it grants me what our founding fathers promised anyone who makes a home on U.S. Soil, the right to Life, Liberty, and the Pursuit of Happiness. It’s that promise that makes America beautiful, access to assistive technology, like my NeuroSwitch,  is the best way for our government to keep that promise to its disabled citizens.

Also, and I’d kick myself if I don’t say this… I have this unusual collection, a collection of odd and unique neckties.  I have quite a few, but I don’t have a Vice Presidential Necktie…

I’ve been reading lots of Sarah Vowell lately, The Wordy Shipmates, Unfamiliar Fishes. Her love of history, the way she talks about America at its best (and worst) is contagious, I think I channeled her in writing my note to our Vice President.

Anyways, Vice President Biden was very generous with his time, and very receptive to the need for providing technology to the disabled.