My Whole Expanse I Cannot See…

I formulate infinity stored deep inside of me…

I can’t sleep

June 22nd, 2011 | Category: Life

I can’t sleep, I feel that part of me somewhere else and it hurts, being so far away hurts. I don’t know how to make it not hurt. I know I deserve this, I know.

1 comment

Something good

June 21st, 2011 | Category: Life

I just want to feel something good, but I won’t. It’s my stupid fault.

No comments

Tired

June 21st, 2011 | Category: Life

I’m tired and lost and alone, and I’m scared. I’m not ashamed to say so. I miss her so much, so much She’s somewhere else and doesn’t want me… I just, she’s my best, was, I guess, my beautiful love, she was going to be the woman I finally asked to marry me. I screwed everything up, fucked it all up so badly. I didn’t mean to, but every fuck up piece of shit who gets left for someone better says that.

2 comments

Not okay

June 03rd, 2011 | Category: Life

I’m not okay. I’m so fucking not okay.

2 comments

Tattoo #41

December 08th, 2010 | Category: Life,Tattoos

So, I got this tattoo some months back, while I was in Cincinnati. I got it my first few hours in town, we arrived and by nightfall I was having these lyrics etched into my leg. The lines are from an Alanis Morissette song, Flinch, off her record, Under Rug Swept. The song is really a story, six minutes of flash writing about this connection between two people, this consuming, unrelenting connection. These two lines, they’re my favorite, I’ve thought similar thoughts so many times.

These lines always remind me of someone, this person who’s always with me, even when she’s not. I was thinking about her that dusk in Cincinnati, thinking about how she has this deep affect on me. It’s like she has a key to everything in me, and I couldn’t change the locks even if I wanted to. The affect is beyond reason, and even when it hurts I cannot make it stop. It’s so like the way breathing affects me, the way a lack of air feels miserable, terrifying, and there’s not a Goddamn fuckin’ thing I can do to quell that lack, or change the way it makes me feel. I missed her so much when I woke up that morning, I missed her before I even left Tampa, and it hit me, it really hit me when Flinch popped up on my iPod just as we crossed that line into Cincinnati, it hit me that this one person means everything to me, that no one else holds so much sway to render me so completely happy, and so perfectly lost and melancholy. It amazes me how lyrics can pull so much out of a person, like some sort of magic spell that make the world clear as a pane of glass.

That’s all I care to say about tattoo #41.

(Oh, the grammatical error in the tattoo was done to match the way the lyrics are written on Alanis.com.)

1 comment

So, lately

November 18th, 2010 | Category: Life

So, lately my trach’s been bothering me, my ear’s acting up again, so I can’t hear so well. I’m just not feeling so great, I’m kind of nervous all the time. It’s hard to write like that, or just to focus on anything. Then there’s this other box of somethings I can’t write until, I don’t know, five minutes before I die, I guess. I’m trying, though. I’m trying to be better.

1 comment

I’m getting published in Rigor Amortis!

August 05th, 2010 | Category: Life,Writing,Zombie Erotica

So, a few months ago my friend, Matt Staggs, tweeted something to the affect that zombie fiction was tired, which made me ask if “zombie erotica” was tired too. Zombie erotica is the only sort of fiction I’ve ever had published. Well, a bunch of us got into this bizarre and rather amusing conversation about zombies and sex, the lovely, Jaym Gates, coined the term, “Rigor Amortis,” and joked that it’d be a great title for a flash fiction anthology. Well, that joke got pretty serious pretty fast, Jaym took the idea and she fuckin’ ran with it. She found a co-editor, the excellent, Erika Holt, and a publisher, Absolute XPress, and soon enough.. Rigor Amortis will be a reality.

I submitted this piece I wrote last year, Waking up someone who isn’t me, and they were kind enough to accept it. It was posted here, but I took it down because it’s being published. I’m pretty proud of that story, and I tend to at least mildly hate everything I write. I wanted to take some really dark feelings, loneliness, sorrow, yearning for a physical connection to someone, pain, longing for existence without that pain, I wanted to take those feelings and paint them with words. I wanted to write images that made those feelings palpable. I think I managed to do that, I hope so anyways.

At any rate, I’m really excited to be a part of Rigor Amortis. I so can’t wait to see it finished.

3 comments

If you’re thinking about a DNR…

July 22nd, 2010 | Category: Life,Opinions

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.

9 comments

Tattoo #35

June 03rd, 2010 | Category: Life,Tattoos

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

So, my thirty-fifth tattoo is from an Alanis Morissette song, Can’t Not, which is on my favorite Alanis album, Supposed Former Infatuation Junkie.

To me, the song is about how artists practice their craft in spite of criticism, scrutiny, and the pain one feels from being struck by such weapons. People who are passionate about their craft, whether it’s visual art, or music, or writing, they feel a drive to share what they create, to put it out there for anyone to take in. Sharing such creation opens one up to not only praise, but also harsh words and deep criticism. It can be painful for one to have what they create knocked and dismissed, spoken badly of, but that drive to create and share outweighs any feelings of pain that come from practicing one’s craft with absolute honesty. Creation for the sake of creation, whether anyone likes it or not. Alanis writes songs that make people uncomfortable, some just flat out don’t like her, and that dislike hurts, but she simply can’t not write those songs. She can’t not be herself and create with complete honesty.

Whenever I write about depression, or suicide, or sex, or derision toward God, fictionally or otherwise, it is likely to upset someone (especially people close to me). Honesty in writing, particularly when it comes to personal subjects, isn’t always welcome, but this is what I do and I can’t not do it. No matter how much I hate any personal fallout the things I write can cause, this is my craft and I can’t not practice it.

Really, I have something deep inside me, something that pushes me to do things no matter what. I can’t not do things like, tell a woman how completely I love her, even though she might not love me back, or look into her eyes and tell her how much I want to kiss her, to take off all her clothes for the first time. I can’t not travel and experience things, even though something could go astonishingly wrong with the machines, and hoses, and tubes that keep me breathing. I almost died going to a movie last December, but I can’t not go, and do, and be. I do things because I can’t not.

2 comments

« Previous Page