My Whole Expanse I Cannot See…

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

This one, it’s… for me.

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

This tattoo comes from The Engine Driver by The Decemberists, with an Aimee Mann twist. Aimee covered this song with The Decemberists in concert, I decided to have her wording etched into my chest.

The song itself is simply beautiful, a lush, sweeping narrative about love that might not love you back… Why did I get it? Well, there’s a “long one” in my life, I don’t question if I’d work beside her, I know it with everything in me. That night, a few before last Christmas, I wondered … if she’d ever just stop and let me.

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.

And fuck you if you think the last post was boring, or mopey, or “emo.” Just, fuck YOU. I don’t exist to inspire people, I don’t write to be all uplifting. I write what I write, if you don’t like it, fuck off and fuck you.

I’m going to end like this, the narrative I’ve written for myself just isn’t going to end happy.

A reader recently was good enough to write:

I’m unsubscribing your feed as your blogs have become boring and lethargic. I understand your predicament, but if you are going to blog, please make it worth your readers time.

If I’m boring, quit reading. I’m not trying to be boring, I’ll quit eventually, I’m sure. Still, if you can’t stand me anymore, go ahead and unsubscribe my RSS or do whatever you have to do.

So, I’m trying to post more, I’m making a concerted effort. Really, I’m making an effort to set life right again. When life feels good, the writing follows. The last few months have not been stellar. Honestly, it’s been more than a few months. I’m ultimately responsible for my life and making it comfortable, it just gets exhausting when things don’t go right for a long enough stretch. Depression sets in, which really doesn’t help make anything turn good again, it just feeds the slump.

I’m waking up, I think. I’m trying harder, at least.

So, I listen to the New Yorker: Fiction Podcast. Every month, a writer from today chooses a story to read that was previously published in the New Yorker, then there’s a discussion about the story. I’ve been listening for awhile, but the one story that really sticks out for me is Day-Old Baby Rats by Julie Hayden, published in 1972. It’s a short-story about a day in the life of a young woman in New York City. She’s an alcoholic, we’re there for her first drink in the morning, we see the city through her eyes, we hear her thoughts on everything she sees, and doesn’t see. It’s a gripping story of a woman, stricken by loneliness and anxiety, surrounded be millions of people.

Julie Hayden created a beautiful story in Day-Old Baby Rats, but Julie Hayden’s personal story is also sadly moving. She lived in New York City, had a story collection published, did regular writing for the New Yorker, she was doing things just about every writer aspires toward, definitely what I aspire toward. Still, today you can barely find a trace of her on google, by the time of her far too early death in 1981 her work was largely out of print, largely forgotten. Anxiety and phobia fueled her own alcoholism, she’d carry a flask, taking nips to numb her worries. Cancer ended her writing and her life. forever. She did these great things, but she still slipped and fell and ended badly. Her sad writing mirrored the sadness in her head, people found it beautiful, compelling, and yet for some reason, she died pretty much unremembered. It scares me how that can, and does happen. We all want our stories to end well, but sometimes, no matter what, they don’t. They just don’t.

I worry about my story.

Well, now that I know of her, I’ll remember Julie Hayden, and maybe this post might put her work in some new minds. It’s not much, but it’s something. She, and her work, are definitely worth remembering.

After thinking about it, I feel like I wasted the previous two posts. If I were quitting this blog, they’d be perfect. They’re just an obscure allusion to British TV that suited my mood at the time, still kind of do. I’m tired lately, but nothing’s finished, the blog isn’t finished. This blog probably won’t be finished until I am, that’s been the goal, anyway. This blog is supposed to reflect me, I’ve called it a live memoir, and I think I’ve been doing what I set out to do. Life isn’t always up, it’s a disturbing roller-coaster, and I think this blog is accurately reflecting my ride. Though, the roller-coaster metaphor is actually pretty stupid, it implies that we have absolutely no control over what happens while we’re breathing. We have free-will, just enough to make things interesting.

I have free-will, I have some control over my current… ennui. I have to get out of this.